The CRPS Girl

Where's my bonbon? and other irritations.

2011-11-07T20:01:00.000-08:00

So I'm a bit irritated and this post is the result. These are things I've heard multiple times and they set my teeth on edge every time.
The first is the whole "people on disability are lazy and just sit around eating bonbons all day" idea that is going around right now. Many people assume that those who accept government assistance in the form of disability are just lazy people who don't want to work. Apparently my bonbons got lost in the mail when they sent my disability stuff. These people have no clue what it is like to live with a disability. Today, for example, I had to take a bath. For most people, they don't even think about it, they just do it. I can't. First I have to let my dad know I'm going to take a bath so he can listen for me falling (after fainting) or calling for help. I have to turn a fan on to make sure I don't overheat but can't point it directly at myself because the air plus cool is painful to my CRPS. On a night like tonight, my fine motor skills are almost gone. I'm constantly dropping things, which is frustrating and time consuming. My balance has been really poor lately, so standing up is dangerous. I fell tonight because I couldn't catch myself in time. Onc I'm done, I'm exhausted and my heart rate is through the roof. I have to go straight to my bed and lay down. Bonbons, right? That also ignores the fact that I would love to work! I was in a field I loved, working towards a goal I've had since I was two. I wish I could find a job. But really, who wants to hire an employee that can't guarantee they can be there every day and who has no warning when they can't come in? This doesn't even consider my memory and cognition issues, the fact that my immune system sucks and I will likely catch every illness that comes through. And never mind that we are in an economy where there are 5 (probably healthy, able) applicants for every 1 job.
Something else people like to say is that "at least you don't have cancer!" as if this is something that should cheer me right up. It just demonstrates a total lack of understanding of the situation. It is totally unfair to compare my (or anyone with chronic illness for that matter) situation to cancer or other unrelated conditions. Not to mention, it feels like the person saying it is totally dismissing my struggles. Everyone knows about cancer because it is everywhere. There are numerous charities, tons of money in research and education, even entire months for cancer. CRPS/RSD and Dysautonomia/POTS have none of that exposure. There are very few organizations and they have to fight for every penny they get. My struggle with CRPS and POTS are unique but not to be dismissed lightly. After all, no one says to a cancer patient "at least you don't have XYZ."

Assistance Dog Blog Carnival: Six Months and Stronger Than Ever

2011-10-06T17:19:00.000-07:00

This is my post for the Assistance Dog Blog Carnival which is hosted by Gentle Wit. The theme is achievement.
This theme came at a great time. On September 17, I celebrated 6 months of partnership with Cole (and my half birthday). We went cheer on our future flyball team and I bought him a new tug. Then he got to go visit his Aunt J and play with her pup Peanut who he loves.
While the day itself is significant, I think how much better our partnership has improved is the real achievement here. I've noticed in the past few months that after I tell people how long Cole and I have been partnered that they always seem very surprised. I've had random people tell me that they can see how closely bonded we are.
I think what is more important is that I can tell how much closer we are. He knows me so well it is scary sometimes. He knows that certain movements or tones mean one thing. He knows when I'm having a bad pain day or when my balance is especially bad. He knows when I'm upset or panicking (which is rare but happens) or overheating. I feel how much more in sync we are. When he is off duty, he is still focused on me and wants to be with me. At flyball we're still a team, even in play. He learns at an amazing rate and in a way my other dogs don't. He figured out a flyball box turn by watching other dogs at the flyball match.
Cole has inspired a passion in me that I haven't had before. He loves to work but he also loves to play. I'm already addicted to flyball and I think he is too. We're going to try our hand at the conformation ring in the Altered class. He has inspired a love for the Poodle breed that I haven't experienced in a breed before.

Lost: One Function Immune System If Found Please Return in Working Condition

2011-09-09T17:49:00.000-07:00

I'm sick again. I've had a sinus infection for a month that won't go away. It started very mild and I went to the doctor as soon as it started, thinking I could catch it early and avoid a prolonged (which is typical for me) ordeal. I've seen 3 different PCPs and have been on 3 different antibiotics plus a blast of steroids. I'm half way through the third round and the steroids ran out 2 days ago. The steroids were kind of a band aid and they gave me a bit of a boost (of course, they also made my nausea worse, so it was a daw) but now that they are gone, I'm going back to where I was. I'm wheezing and using my inhaler again, my skin (I have eczema which flares when I'm sick) is geting irritated again and my sinuses are awful.
This isn't especially abnormal for me. My immune system has never been stellar and since I got CRPS et al. it has totally tanked. I catch everything anyone might be carrying (I've been told I should just hide through winter) and once I catch it, I can't get rid of it. This problem has been set on the back burner while we were first trying to get a diagnosis, then working on a treatment plan and dealing with the POTS diagnosis. I'm seeing an ENT at Duke next week and they might send me on to an immunologist as well.
Beyond the absurd length, these infections hit me much harder than a typical person. When your average person gets a sinus infection, they might spend a couple days, maybe a week if it is bad, in bed eating soup and feeling ill. They recover quickly and are back to their normal life with no problem. They usual stilla re able to talk to their friends while sick, they might even see friends, family or significant others while sick. That isn't how it works for me. When I'm sick, I'm in negative spoons constantly. I wake up totally exhausted and sleep 18 hours a day or more. I take care of my pets and Coleman if I can, if not someone has to help me. I don't play fetch, I don't do much of anything with them. They, being adaptable, are used to it and just enjoy the time spent cuddling with me in bed.
I let my e-mails go, I ignore Facebook and Twitter most of the time (although they are nice for my bouts of insomnia), I don't text much and I very rarely call anyone. I don't want to see anyone because it would completely exhaust me and likely make me sicker. Most people don't understand how just spending time talking with another person can use any energy but it does. One of the things you learn when dealing with chronic illness is that everything, and I do mean everything, uses spoons. Even my parents, who I live with, don't see or talk to me much.
Now, some of you may be thinking that this sounds like a fairly selfish mentality. After all, couldn't I spare a little bit to see my friends, the people who support me? Honestly, no. When you are sick on top of being chronically ill, you have to think about your health first. Everything you do is about how to not make yourself sicker and that often means making yourself comfortable before making others happy. I've found this is one of the hardest concepts for those who aren't chronically ill to understand. They have no reference and their experience with these kinds of infections and viruses are very temporary and easy. They get frustrated that the chronically ill sick person won't go anywhere or do anything, they just seem to stay in bed. They don't heal quickly and take weeks to recover from being sick after the infection has cleared up. Bounce back isn't something you often hear when talking about a chronic illness patient. Spoonies often don't look as sick as they are. My parents can tell when I'm sick, most other people can't. I'm an apparent expert at not looking sick and that is very deceptive. Of course, I don't have a clue what sick looks like, so I don't know what I'm doing to not look it.

Why I Don't Want To Move Out of My Parents' House (so please stop asking me when I'm moving out)

2011-09-02T17:27:00.000-07:00

I want to say at the outset that this isn't an attack on anyone. I do hope this makes people think though.
I live with my parents in the house I spent much of my childhood in. I moved back home a couple months after I got sick once it became obvious I wouldn't be working and thus able to afford my life in Raleigh any more. That was a great decision since I was put on narcotic pain medicine a month or two later and wasn't able to drive any more. Two and a half years later, I am still here. Yes, I am 24 years old and I live with my parents. That fact seems to baffle people so I am constantly asked when I'm going to move out and get on with my life (which in and of itself is a pretty insulting implication that I'll address in a minute).
Our house a long house that has everything except my dad's office on one floor. I can get everywhere in my wheelchair. My parents had ramps built in both the fron and back of the house so I can get in and out as well as to the pool and our large backyard. We had previously fitted my bathroom with grab bars, a hand held shower and a bath chair for my grandmother. They have no problem with my animals, in fact, they love them as much as I do. I'm never worried about what would happen if I have a medical crisis since my father is a pastor and is home most of the time. I never worry about my cats and dogs being fed or pottied when I'm too sick to get out of bed because my family will help me. It is hard for me to cook, load the dishwasher or even get the mail. I constantly drop things and often need help cleaning the mess up (like my recent debacle with a container of soup that wound up all over the floor). Why would I want to leave?
People who ask me this don't understand how hard it would be to find a place that was affordable, accessible and would allow my cats and dogs. Disability doesn't pay near as much as most people do and what little money I make from my collars wouldn't cover the difference (never mind that I haven't been able to cut and sew in months so have no money coming in). I need ramps to get in and out of a house with stairs or even a single step. I need a hand held shower head. I need the layout to be conducive to a wheelchair. I don't want to leave my non-service dog dogs or my cats at home. I don't know that Cole would really enjoy being an only dog either. He and Lola, my pit bull, are best friends and have been since day 1.
The other problem with this question is the implication that my life is at a stand still while I'm living at home. My life didn't stop when I got sick. It radically changed, but it didn't stop. Since I got sick I've trained my own service dog, learned to sew, started a business, learned so much about my illnesses, disability and service dogs, contemplated possible career paths, made tons of new friends that I wouldn't be the same without, learned how adaptable I am, learned how to ask for help, spent time with family and friends like I haven't in years and so much more. Does that sound like a life that has been stuck?
So now, maybe next time you think about asking someone when they're moving out and/or getting on with their life, you'll remember that their life hasn't stopped and they may be exactly where they should be.

When Stereotypes Make Decisions

2011-08-27T16:47:00.000-07:00

Before I start on this post, an update on why I've been MIA from blogging and Twitter. I got a sinus infection two weeks ago that isn't responding to antibiotics. I'm exhausted, miserable and hurricane Irene has pissed off my CRPS. I'm sleeping a lot and have only left the house to go to doctor's appointments. Coleman would much prefer I stay in bed 24/7 and tries very hard to keep me there (Poodles have opinions about what their partners should be doing when sick).
Not long after I got Coleman home from training, I decided that I really wanted to get him (and myself) involved in dog sports. After much research, I realized that flyball is the sport he would enjoy most and is the one I am most capable of participating in from my wheelchair. I talked with some friends who compete in flyball and they thought we would do well if it was something I liked. They suggested I start contacting teams in my area to find one that was looking for new members. I made some contacts and found out that there was a flyball team near by called First In Flight flyball. They didn't have any open spots in their flyball class but one of the ladies I had contacted in my search offered to get us started by coming over to our house. That is by far the best thing to come out of this ordeal since I made a friend that I adore.
I was sick most of the summer but finally was healthy enough and cleared to drive, so I got to sit in on a class and watch a bit of practice. Everyone seemed very nice and I was really looking forward to joining the class and team eventually. I e-mailed the head of the team the Monday after I visited and asked when the next open class was, hoping it wouldn't be too long.
It took almost a week to hear back and the response I got was like a punch in the stomach. The head of the team only briefly say me maneuver my wheelchair and it was in a crowd so I went at a normal pace so I didn't run anyone over. In the e-mail she sent, she said that she felt it would be unsafe to have me in class or on the team. No chance, no trial run, just outright being denied.
Now, you may be saying, it sounds reasonable. And if she had seen me maneuver in my chair, the speed I can move at and how quickly I can get out of the way and still had doubts, I might agree. But rather than see for herself, she relied on the stereotype that wheelchairs are slow and bulky and that the people who use them couldn't possible participate in a fast paced sport with "normal" people. Of course, this stereotype doesn't hold much water when you learn that there is a competitor in Maryland who competes in a scooter and their team has never had a problem with safety.
I'm not one to force anyone in to working with me if they don't want to so I've started the search for a team again. Thus far, every team I've e-mailed has welcomed me with open arms and have had no problem with my wheelchair. Actually, more than one of the people I contacted referenced the competitor in the scooter and the fact that he has no problems and poses no extra hazards. None are as close as First In Flight but I will make it work.

I have been lucky that this is the first time I've encountered this. I've read other bloggers' experiences but thought that I might have just slipped under the universe's radar. It has certainly been a learning experience but one I wish I could have foregone. I do hope that by talking about my experience, I can prevent someone else having to go through the same thing

Acceptance

2011-08-21T16:49:00.000-07:00

I've discovered in the chronic illness and disability that acceptance is a bad word to some. It is said with scorn when referring to those who do it and is repugnant to those people. But why? I'm not sure and I've never really gotten a good answer. The impression I've gotten is that acceptance and accepting is interchangeable with giving up.
Not to me. I accept my illness, I accept my limitations, I accept my need for assistance. When people talk about accepting your illness as I bad thing, I don't really understand.. By accepting my illnesses (mainly CRPS and POTS) I'm able to move on with my life as it is now. Not accepting them seems like trying to live in the past and that isn't healthy in any situation. By accepting my illnesses, I'm able to look in to treatments, assistance and anything else I may need to continue to live my life.
Accepting limitations seems to be the biggest issue. I've seen people speak with scorn and disdain about people who accept their limitations as if they are lesser people for that acceptance. I accept that I can't do everything I was once could and that I have to manage my spoons if I don't want to be in a worse place than I was to begin with. I don't try to be the person I was before I got sick and everything I've read and heard says that is healthy. I don't try to go to bars or concerts anymore. I don't go out in the heat of the day. I use a wheelchair so I'm not constantly falling. I've learned new ways to do things that take fewer spoons or cause less pain. I have a service dog to assist me. If I didn't accept my limitations, I would still be bumbling along making things worse every day. Does that make me a bad disabled person? no, I don't think so.
I do think this is where the supercrip trope (see this post by Sharon at After Gadget to learn more about disability tropes) comes in to play. These people overcome their disability and do things many normal people don't by (according to those who think accepting is a bad thing) "not accepting their limitations." Therefore those of us who do accept our limitations must be less than the supercrip. If you have accepted your limitations and are using a servicedog/wheelchair/other aid, you have given up and should look at these supercrips to see how you should think/act.

The Disability Gauntlet

2011-08-07T21:29:00.000-07:00

I'm not even going in to the terrible blogger thing again because clearly it's going to take a while for me to get back in the swing of things. I did do one slightly productive thing while I was feeling crappy and that is learn to crochet. I hated knitting but crochet is surprisingly easy and fun. It is much easier to make pretty things that look difficult in crochet than knitting for me.
Last week I went on our yearly vacation to Myrtle Beach with my dad and brother. My aunt, uncle and 14 year old cousin go down at the same time and it is always a lot of fun. Compared to the quiet, sedate little spot that Oak Island is, Myrtle Beach is a zoo. There is tons to do so it attracts a huge crowd. And with any huge crowd, the problems seem to multiple at a ferocious rate.
One of the first things we discovered is that many of the shops are small and have given no thought to wheelchair accessibility. There were multiple places in each shopping center that were totally inaccesible to me in my wheelchair. I'm actually surprised many of those set-ups aren't a fire hazard.
Being in a wheelchair in a crowd is often an adventure in and of itself. Since you are well below the eye level of most adults, they often completely overlook you. I've been nearly sat on numerous times, bumped more times than I can count and generally ignored. I'm taller than a child so I wonder why people so often miss me but see children. I know that my wheelchair didn't come with a cloaking device (far too expensive :wink: ) so why can people see me? I did learn that I need to pull out my flag I made (an NC State flag attached to a PVC pole and then attached to my wheelchair. The pole is decorated in neon pink and purple duct tape and the other side of the flag is a purple duct tape background with a neon pink duct tape handicap sign (yea, all made by me except for the flag itself). I did notice that helped at the crowded holiday craft show. Of course, I was in a rental wheelchair because mine was in the shop so I didn't have a means to attach it anyway. The one good thing that came out of the crowds was I learned Cole taught himself (seriously, this is not something I or CARES thought to train) to body block me in crowds so I don't get bumped (which is especially painful thanks to my CRPS/RSD). He will put himself on the side of me closest to the crowd and stay there. If we stop, he will circle the sides and front of my chair to make sure no one bumps me. It isn't obvious to others what he is doing (people seem to automatically step out of te way so they don't step on the dog) and I didn't even realize it until I saw him doing it so much, day after day while we were out.
Then there is being partnered with a service dog here. Obviously, I expect quite a few comments and questions and we honestly plan it into our trips out. We encounter many more people per outing in Myrtle Beach and most of them have never seen a service dog. I do quite a bit of educating about service dogs, from what they do to how there are not any set breeds that are service dogs. I get to talk about poodles and meet many interesting people. Of course, with these positive and educational encounters, there come the negative, the annoying and the downright rude. There are the people who think he is there for them to pet and cuddle. Most of those will stop once I politely ask them to. Some don't. For them, I raise my voice so attention is drawn to us and repeat "PLEASE don't pet my service dog, he is working." Public embarrassment works where manners doesn't. There are the people who sneer and sniff and berate me for bringing a dog in there. There are the people who attempt to distract or scare the dog for fun (yea, I don't get them either). People let their children run up to him, pull his tail and ears (this I try to stop before it happens but sometimes they come up where I can't see them) or tell their children that my dogs bites (this really irritates me and I usually tell them not to tell their child something like that). Others, usually teens who thing they are above the rules, force me to grab their hand after they ignore me telling them to not pet my dog (sorry kid, your parents may not enforce rules but I do).
There are people who want to know your entire medical history or just say really silly things. What's wrong with you? Why are you in that chair? What do you need your dog for (I don't mind explaining some of his tasks but I don't always like disclosing my medical history to a total stranger)? You don't look sick. Man, I wish I could sit down all the time (really? cuz I wish I could stand up and not risk falling). You're so young (did I miss the minimum age for disability?)! Why don't you do this treatment, that drug or this other thing they saw on TV? Oh yea, I read about this amazing supercrip who did all this amazing stuff and then got up and walked out of their wheelchair with just hard work! While yes, they usually mean well, that doesn't make it any less invasive or hurtful or unnecessary.
Of course, there were good encounters too. I spent most of my time at my aunt and uncle's hotel with my cousin and the staff there (except for one overzealous maintenance man who thought he knew more about my dog than I did and whose dogs apparently never pant) were very polite and helpful without being condescending. They never asked for ID or tags or cards or anything like that. They did register Coleman with their room so everyone knew who the dog was and I wouldn't be asked each day. Everything there and at our condo was accessible which was nice. We got to meet a couple people who had family that were puppy raisers and one little girl who was going to be getting a service dog very soon. We met strangers who educated others on why you shouldn't pet a service dog before I even got the chance. And one lady, who saw I was struggling to keep my wheelchair, dog and self dry in a sudden storm gave me a large umbrella out of the blue!
That is the disability gauntlet that is Myrtle Beach. I have quite a few letters to write (both good and bad) and hope I left at least a small impression on some people we encountered about service dogs and disability.

Giving Up? Since When?

2011-07-13T14:53:00.000-07:00

Yet again, I have neglected my blog. Between an allergic reaction to the Prialt in my pump and now Lyme disease, I've been more exhausted than usual. I get back on Blogger and they've changed everything! Not sure if I like it yet.
This is a post that I have been meaning to write for a while but a post on a forum yesterday finally gave me the push I needed to write it.It is a commonly held mentality that never occurred to me until I heard others say it.
I often see posts that people think using a mobility aid, especially a wheelchair for some reason, is giving up. That if you sit down and start rolling instead of walking, you are letting your illness/disability win. I must admit, this has always baffled me. When I decided to use a wheelchair, I didn't see it as me giving up or letting my CRPS win. I saw it as giving my disease the finger. I was able to do twice as much as I could if I was on my feet and I didn't have to worry about falling and being stuck in bed for a week after. I was doing tings I hadn't been able to do and I was enjoying things again. It became about doing what I wanted instead of gritting my teeth and just trying to get through the day.
I'm not sure where this idea that wheelchairs are bad came from but I would guess it is a remnant from when disability was something to be hidden. I suppose it is a tangible admission that you aren't as healthy as you once were but, for me, the limping and falls were a much more obvious sign of that.
I love my chair. She doesn't have a name yet (although her buddy, the wheelchair van, does: Wendy) but she is pimped out! I have a car seat cover over the leather seat and pins from 3E Love, my favorite of them says "Wheelchairs are Sexy" with the wheelchair heart behind the text. I want to get some decals and bumper stickers to add to the plastic parts since I think painting would default the warranty. She gets me all over the place and allows me to do twice as much (at least!) than I could if I was upright. The bonus is that I have very little fall risk unlike when I walk, even with my walker.
So, I'm going to keep on rolling and thinking, as I'm rolling, "Up yours, CRPS &POTS!"

The Beach

2011-06-12T17:00:00.000-07:00

We leave soon for our yearly beach trip with my entire family (including aunts, uncle and cousins). This is a family tradition that goes back to when my Dad, aunt and uncle were very young. When my grandparents were still alive, they came as well. We stay in different houses but we always go to the same beach.
Any time I think of the beach, it brings back amazing memories. I remember (and am one of the only grandkids who do) playing with my grandfather before he got Parkinson's Disease and even before it got worse. I remember beggin my dad and Deda (what we called my grandfather) to get in the water with us so we could go out deeper on our floats or boogie boards. I remember Deda playing with us in the sand, teaching me to play Rook once I was FINALLY old enough (my family will tell you I asked all the time to learn and watched them play more games than I can count) or going to the bakery in the little shopping strip to get a giant cookie. I've watched my cousins grow up and played with them nearly every year.
This year, I am just as excited as I have been my entire life about the beach trip. My grandparents are no longer with us but with so many happy memories at this beach that is it almost a memorial to them an how much they loved our family. I know that this year, I will spend even less time out on the beach than I did last year. I am much more heat intolerant this year and there are almost no wheelchair accessible beach houses so it is very hard to get out there. Last year I stayed out maybe 3 hours and then napped all afternoon.This year I likely won't make it that long and I'll have to wash and dry Cole so he doesn't carry sand all over. Despite all that, I can't wait to get there. I want to see how Cole likes the ocean, I want to play fetch with him on the back, I want to visit my favorite pet stores while we're there.

Forgotten? Unwanted? Who Knows

2011-06-11T13:27:00.000-07:00

This is one of those not so fun posts about living with a chronic illness (CI) and disability. I've been slowly working on this one for a while and debated not posting it, but this is a part of life with chronic illness/disability and something I think a lot of us experience.
I recently saw an article for people without disabilities/CI on how to deal with a friend becoming one of those two things. I'm trying to find the link and will insert it in this post once I find it. It had a lot of good advice but one thing struck me with both its ease for the friend and benefit for the person with a disability/CI. That advice? Invite your friend even if you know they can't go so they still feel included.
Obviously, it is hard sometimes being friends with a PWD/CI. I hav no illusions about that. I can't go to my friends' houses because they aren't wheelchair accessible. When we go out, we have to make sure the place we're going is accessible. We always have to take my van so that someone doesn't have to push my manual chair. People stare and come talk to me all the time because I have a service dog. There are always extra steps, more time and planning ahead. I'm also single, so when everyone else has a significant other, I'm kind of a third wheel.
That being said, I don't get a lot of invitations to go out. I try to take it in stride but I can't say it doesn't hurt to see Facebook statuses about going out with my friends and I'm not invited. I see posts about movies, dinner, things I can do and it hurts a little bit. I can do those things but I rarely get an invitation. I do most of my socializing online but I do want to get out of the house every once and a while. It doesn't help that many of my friends live far enough away that it takes a trip to get here. The times when they get to come see me are almost like a break from real life.
I know this has been kind of rambling but such is life with CRPS and POTS. I hope that by writing about this, instead of stepping on toes, I offer the other side of things. Maybe someone will read this and start inviting their disabled/CI friends out more, even when they can't come.

Bad, Bad Blogger

2011-06-09T19:18:00.000-07:00

I have absolutely neglected this blog. I didn't mean to; I actually have many posts with the idea I wanted to write about saved for when I have the spoons to write about them. I'm having an allergic reaction to the Prialt which is manifesting as extremely dry skin and a serious eczema flare. They had to take the Prialt much lower to see if the reaction would slow down so I'm back to the pain I was at pre-surgery and the itching (and me scratching in my sleep) is making it much, much worse. I haven't been on my laptop in over a week. Tomorrow I go back to my pump doctor to discuss our options since I'm still miserable with itching and I look like I'm peeling from a bad sunburn (and I haven't been out in the sun, much less sunburned, in two weeks).
I'm going to try and get back on this once I'm feeling better. Not sure when that will be, but it is coming.

Catching Up: Intrathecal Pump Implant

2011-05-17T08:58:00.000-07:00

I have fallen horribly behind in blogging, commenting and following. Actually, I've fallen behind in just about everything in my life. But that is another entry for another day.
On April 19 I had my long awaited intrathecal medicine pump implant. I was the first surgery of the day for Dr. H so we had to be there at 6 am. Poor Coleman was not impressed when the alarm went off at 5 am. I did the pre-surgery shower with the antibacterial shampoo, got dressed and we were out of there.
We got there and got checked in pretty quickly. My dad stayed in our home town so he could let all of our dogs out to potty before he came up.
The nurse came back to get me and Coleman and I headed back to the pre-op area. Once there, I changed and got on the bed, then the nurse told me she is usually terrified of dogs but she was doing fine with Coleman. They got my IV started, which made me a bit light headed and nauseous and Coleman got up to check on me when it hit. At that point, they called my parents back and the doctors who would be in the room started to come by. I got the same nurse and anesthesiologist as I had for my spinal cord stimulator trial so she knew all of my problems and was confident this would be a much easier surgery. One of the residents who was in on my last surgery was in this one too, so it was nice to see so many familiar faces. We decided which side to place the pump on, they marked it and then it was time to get the show on the road. They gave me a mild sedative on the way there and then once they got me on the table in the operating room, gave me the good stuff. I honestly don't remember that, I am going on what was told to me after surgery.
The next thing I knew, I was waking up and kind of hurting. They gave me some pain meds, told my family the discharge instructions and we were ready to go. Apparently I also talked to a nurse about CARES but I do not remember it at all. Honestly, most of the rest of that day has been fuzzy since I got home.
This was by far the easiest recovery out of my past 3 surgeries (SCS trial, gallbladder and this) and I attribute some of that to Coleman helping me so much. His retrieving and assisting me when I had to get up meant I did no movement that could harm the pump placement or catheter. I was able to get my hair washed that Friday and was up and about the next day. The one hiccup was an allergic reaction to the adhesive on the tape that they used over the incisions but that calmed down once we got it off.
go in every other week or weekly (depending on my doctors' schedules) for increases in the meds. Prialt has severe side effects if it is increased too much or too fast, so we are going slowly and only going up by 3-5% each time. I am having some problem with nerve pain/CRPS at the pump incision, but that was kind of expected. The incisions have healed up well and now I have a scar and a big bump where the pump and catheter are. I'm really pleased with how things went and am looking forward to getting a good dosage for me to get some actual pain relief!

Blogging Against Disablism Day 2011:What You Say

2011-05-01T07:06:00.000-07:00

This is my first time participating in Blogging Against Disablism Day (hosted by Diary of a Goldfish) and I have Sharon at After Gadget to thank for me finding out about it. I wasn't sure what I would write about until I remembered something someone close to me (who usually is very good about not doing disablist things) once said. That led m to thinking of other things people say, not realizing what they were doing.
Once someone said to me "I wish I could stay home all the time." I didn't say it at the time but that was like a slap in the face. For some reason, many people have a problem realizing being disabled and homebound is not sitting and eating bonbons all day. I can't drive so I have to depend on others to get anywhere. If their schedule doesn't line up or they have something come up, I'm not going anywhere. If I need something from the basement or a high shelf, I need help. If no one is home, I have to wait. Sometimes that means not eating until someone gets home, other times it means delaying what I planned to do until I could get help. And let's not forget the dangers of being homebound. If someone isn't home, I can't bathe because if I faint, there is no one for Coleman to go find. Now that I have Cole, a fall isn't the terrifying thing it was before (if I fell, I might be stuck there for hours). Definitely not what people think of when they say that. I, and probably every homebound person out there, would happily trade our disability for the ability to go out on our own again.
Another thing I (and every other service dog handler) hear on a regular basis is "I wish I could bring my dog everywhere" when they see me out with my service dog. Once again, the idea is that those with service dogs are just out, prancing around with our dogs. They also negate all the training our dogs have been through to get to the point where they can assist us in public. I get up early to get Cole fed and pottied before we can even leave the house. We have to leave early because in addition to strapping my chair in, Coleman is also buckled in to a seat belt harness and that takes extra time. I'm always thinking of my dog first. That means there are places I won't go because it isn't safe for him. When my friends talk about bars, clubs and concerts, I'm staying home because I won't put Coleman at risk. Then there are the times that whatever I'm doing takes twice as much time because I am stopped so often with questions, comments or stories about the speaker's dog. The times when I have to tell someone they can't pet my dog and, at worst, they calls me names or tell me how mean/awful/rude I am or, at best, they look upset or surprised that the dog isn't there for their personal enjoyment (after all, I hear so much, they so rarely see a dog there). Once again, any service dog handler would happily leave their dog at home if it meant they didn't need them anymore.
Something else I hear all the time is "Man, must be nice to sit down all the time" or "I wish I had one of those" when they see me going about my life in my wheelchair. I admit, sometimes I have to bite my tongue to not say "Must be nice to be able to walk on your own two legs without fear of falling constantly." Of all the things I've mentioned, this one, to me, is the most obviously disablist. I don't understand how so many people can think this is an ok thing to say. While I have some to terms with my disability and being in a chair, I don't understand how people can think that a)this is an ok thing to say and b) being in a wheelchair is really that great. They haven't had to watch their friends and family wrestle a very heavy wheelchair on to a carrier on the back of the truck. They haven't had to watch whoever is driving them circle the parking lot while they look for a space that actually IS van accessible and isn't already taken by a car. They haven't had to postpone a trip because of rain, damage every doorway and corner in their house or learn when they got there that the rental condo isn't at all wheelchair accessible.
The main assumption here is always that the accommodation or result of disability makes disability fun, easy or better than normal life. I am fortunate to have friends and family who are generally (much more than the average person) very disability friendly and they treat me like they did before I got sick. They help me educate others when I am not able and allow me to when I am (and never assume I'm not unless I've said or shown otherwise).

The First Reaction: Assistance Dog Blog Carnival

2011-04-24T13:09:00.000-07:00

Yes, it is time for the Assistance Dog Blog Carnival again! I always look forward to these because they always make me think and I feel like every time, I write a post I wouldn't have otherwise. This time it is being hosted by The Trouble Is... and the topic is Reactions.
Since I was just partnered with my new service dog, Coleman, our reactions are fresh in my mind. Last Sunday marked the one month mark for mine and Coleman's partnership. As I write this, he is laying on the bed with me, making sure that as much of his as possible is touching me. If we're in the bed together, he always wants to be touching me, which I love.
The morning I woke up, knowing I might be meeting my new partner, I was excited and nervous and overwhelmed all at once. Training started in the afternoon, so we had the morning to deal with before things started. Honestly, I remember very little from that morning. It was also my birthday and my dad found a florist halfway across the country in the small town CARES is based in that would deliver flowers to my hotel. I remember the lady knocking on the door and opening it to a bunch of gorgeous, hot pink (my favorite color) flowers. I know I got dressed, got ready and everything but I don't remember.

We got there and class started. They gave us our notebooks and schedule for the week then said that we were going to meet our dogs! I know they did a short lecture before they brought the dogs in but I don't remember. All of my emotions that I had before were quadrupled. Would he be a boy (this was how irrational part of me was. They assured me I would be getting a male poodle like I preferred)? Would he really be a poodle? Would he like me? What if we didn't click?
I heard M come in and refused to turn around. Once the first dog got the the corner of my eye, I say flat, blond hair. my heart skipped a beat and sank for a second, then M turned toward my classmate and handed the leash to him. He was a handsome English Lab and he wasn't mine. They introduced J to his new handler then M left again.
I heard Mom make a noise and I knew M was back with my new partner. Once again, I didn't turn around and this time I stared straight ahead until M and my new dog were right there. I looked over and there he was. M handed me his leash and said that his name was Coleman.

(For those using screen readers, I am having a lot of trouble with alt tags so I'm having to do descriptions as part of the entry. This photo shows the back of my wheelchair, which is all black. There is a white handicap symbol sticker but instead of the wheel being round, it is shaped like the bottom of a heart. There are pink spots on either side of the symbol. You can't see my face because the arm of my chair is up and the controls are blocking my fave. You can see a crystal flower in my red hair and I'm wearing a red shirt. M is wearing a green shirt with light green stripes on the sleeve and blue jeans. She is standing, my chair is pulled up to a folding table with beige top. Cole, a cream standard poodle is standing and reaching his face up to mine. He is wearing a light tan colored harness that has a card in the pocket with writing on it)
My reaction on first meeting Cole was complex. On one level, I was relieved that he was, in fact, a male Standard Poodle. I thought he was gorgeous but a bit skinny. And I was absolutely in love with him. It was like a sign of relief that it was all real: I really did have a new partner and he really was a poodle and he really was mine. I wasn't as emotional at that moment as I expected. I was surprised that he was such a serious dog, since poodles usually have so much personality. I was amazed at how much I loved him from the first.
We got a few minutes to get to know our new partners then it was time to start learning their commands. Cole was very responsive to me from the get go and it further made me relax. I was beginning to get that feeling back that I had when Dixie and I were partners. It is this feeling that I almost can't describe. Like I know I'm not alone, that I have someone always there for me, someone who can help me be the independent person I am on the inside.
At lunch break, Coleman came back to the hotel with us. That's when I saw his true personality and I think I saw how perfect for me he was. I took off the harness and this totally new dog came out of it! He had that wonderful, goofy, happy poodle personality that I so love. He was playing around the room, coming up to me for attention (but being polite) and just showing that this was who he really was. We went back to training for a bit more and he went back in to his working mode. Everything went well and then we were off to Pizza Hut (after the dogs got a break and ate dinner). He did great there and continued to show that he was a great working dog.
I think the crowning part of my reaction came that night. He showed more of his true personality and when Mom went out and bought him a toy, he showed how much he loved to play fetch. Finally it was time for bed. He already knew that he had a place up there as I had invited him up several times and he had his new blanket on the bed. The lights were off and he was laying on the bed. I laid down and started to read, which I do every night. All of a sudden I felt something touch my back. Then there was a larger part of me being leaned against. Coleman was snuggled up against me and he let out this big sign and fell asleep. I knew, really knew, at that point that this was my dog and we were the perfect partners for each other.

Training: Weekend Off

2011-03-29T17:30:00.000-07:00

We had the weekend off from training so we could bond with our dogs and practice. The other mobility team went home since they live a couple hours away. We decided to go to the mall and Petco on Saturday. Cole did great in the mall, ignoring all the distractions and saying right beside me. Since poodles have fallen out of the service dog world he is quite the attraction for everyone, especially with his mustache. He did well and Petco and when we passed the cats that were there with a rescue group, he totally ignored them!

We went to a Japanese steak house for sushi and Cole went right under the table and took a nap while we ate. The waitresses were all in love with him and gave us lots of compliments. We put him in his seatbelt harness on the way to town and back and he did really well wearing it!

I gave him a bath which he was wonderful for and also trimmed his feet so they were more like the traditional poodle feet. I also bought him a Nylabone so he could have something to chew on and keep his teeth cleaner.

On Sunday we decided to go to the zoo! Cole did great and you would never know that he had only been partnered with me for a few days. The animals were interested in him for the most part, especially the giraffes, camels and monkeys. The giraffes were bending their necks as far as they could to look at Cole!

After a fun weekend, we played a little bit of fetch with one of Cole's new squeaky toys before bed. You can really see his personality when he plays, he is so goofy and bouncy!

I am working on getting the rest of the week written up but training was exhausting so I didn't have time/energy.

Training Day 2

2011-03-19T19:08:00.000-07:00

The second day of training started earlier. Cole snuggled with me all night then woke me up with kisses. I took him out to take a break (potty) and he peed and pooped right when I gave the command. We go as fast as my chair will go out there so he can trot a little bit and he loves it. He moves really well and is very graceful.
We started with a short talk about the night before. I told them how well Cole had done and how he enjoyed playing fetch with the stuffie my mom got him. Then we went out to do obedience and add in some new commands. We added "wait" and "come" in.

Cole did great at both and is keeping his eyes on me the entire time. Even when his trainer is around, he is still looking to me for instructions. He is making me so proud during training and it is very obvious we are bonding really well.

We had another lecture about dog behavior, although they focused more on the other team since they have never had a dog before and Cole is my second service dog. I told them about some of my experiences as a service dog handler and our trainer said she will be calling on me during the public access lecture next week and they want to see the brochure I made for Dixie to use as an example.

After lunch we did another obedience session. This time we also worked on "leave it." Cole was a bit nervous around his trainer so he was a bit squiggly but he got back on task and started focusing on me again and did great. Then we had an outing to Wal-Mart. Cole did really well. We even went down the dog food aisle and he didn't even look at the stuff!

We went through the rest of the store and then my trainer said we were good to go. She also said we could "work ahead" and work on his retrieves. We headed back to the hotel so my mom could finish some things for work.

We decided to go to the park and let Cole be off duty while we were on the walk. He is off duty any time he is in the hotel room but we want to give him other opportunities as well. We had a good time and Cole enjoyed getting to sniff and check his pee mail.

Training Day 1: Introducing Coleman, My New Service Dog

2011-03-17T20:42:00.000-07:00

Today was the first day of training and it was also my 24th birthday! My dad couldn't come out here with us so he sent me these gorgeous flowers. (For those using screen readers, I'm working on getting image descriptions up, my internet is a bit sketchy tonight)

We got to the training area this afternoon around 12:45 and were ready to start. I wasn't sure if we would get to meet our dogs today or not. The other person getting a dog and his wife came in and class started at 1:00. They told us we would get our dogs today and started telling us about the schedule and how things would go for us (the rest of the class not getting mobility dogs get here next week).
Then M (one of the trainers) went to start getting dogs. They brought R, the other person's, dog out first, which was a yellow lab named Jonas. Then it was my turn! M went out and came in with my boy. I saw this adorable light cream colored Standard Poodle with a mustache walking towards me! He was adorable! His name is Coleman, which I am shortening to Cole so it is easier for me to say. We got a couple minutes to say hello and I petted his super soft, curly fur (especially his top knot, which is more poofy than his short coat)

We did a lecture about basic commands and how to say them. We were taught where they are used to walking and how to get them to switch to the other side if we need to. Then it was time for some practice.

We practiced heeling, turning around, stopping, sitting, downs and stays. We did them all in different combinations and then it was time for another lecture.

We talked about how to feed and water them, what they are being fed now and what commands to use when feeding. We also talked about how to potty them, what command to use and everything else. Then we let them out to potty and to get some water.

After some more heeling practice, we got to go back to our hotels for a little bit. Cole is very serious when he is working but once his working gear comes off, he is a total goof ball. He was prancing around the room, sniffing everything and being silly. Then it was time to go to Pizza Hut to meet our trainers for dinner.

We had a good meal and Cole behaved perfectly. It was fun to get to talk to the trainers in a more relaxed setting. We only have two people in this part of class os it is nice and intimate.

We came back from dinner and Cole and I went in to the hotel. My mom went to get him a toy since we weren't sure what kind he would like before we got here. It is a stuffed squirrel with a squeaker and some crinkle noise maker in it. We played fetch and he loved it! It has been a long day and we are both tired now. He is laying beside me on the bed on the fleece blanket I made him. He is adapting to me really well and is very intelligent. He is listening to me great and is a fantastic match for me. I am in love with him already!

Lessons Learned

2011-03-06T18:55:00.000-08:00

My family is one of those stereotypical super close Southern family. When I was younger, I spent almost as much time at my grandparents' house as I did my own while my parents were working. I adored my Mawee and Deda (don't ask, it was all my brother's naming). Even with my bad memory, I have so many good memories of them. Small things like picking and shelling beans in the garden or driving with Deda to go get Hardee's as a special treat for lunch. I love sitting in the kitchen with Mawee while she was cooking dinner or getting ready to go out for Friday night dinner with the family (you wouldn't believe how much hairspray she used!).
My grandfather was diagnosed with Parkinson's while I was a kid. Of the 4 grandkids, my little brother and I remember him best. We knew him before the disease and in the early stages of it. We saw how he handled everything.
I didn't know it then but Deda was teaching me how to live with a chronic, disabling illness. I saw him go through everything, from diagnosis on. I have a tattoo on my foot that says "This too shall pass." I remember him saying this all the time through everything and it was the most fitting memorial I could think of.
He took being ill with more grace than I could ever imagine. He didn't let it stop him, he just kept going with the things he loved. As he lost mobility, he adapted so he could continue his life. Sometimes he was a little too determined but he took Mawee's scoldings in stride. He had his moments where he wasn't so happy, when he was frustrated and upset about his limitations.
Now I know how he felt to be trapped in a body where the brain betrayed him. More now than ever I wish he was here so I could talk to him. But I do have the lessons I learned from him about how to handle being sick and losing so much of my ability.

Under The 1 Month Mark!

2011-02-25T18:54:00.000-08:00

I am finally under that one month mark for my training class! I'm finally getting down to the last days without a service dog. After so much waiting and working to get everything I need to get accepted to the program, it is almost here. I'm starting to pack things up, finish buying things for him and generally get ready. I'm also doing a fundraiser, which I've added a side bar for that has a link to the Etsy store. All the proceeds will go to CARES to fund their service dog training!
I'm also sewing some things for the new service dog. I learned from Dixie and got new and better ideas for what I wanted to make for him. The first thing was a mat for when he is laying down for long period on dirty floors (like the movie theater). Since his poodle coat will get any dirt or debris from the floor or any spilled liquid will be soaked up, I want to try and prevent that. It is extremely difficult for me to give any of my dogs a bath so preventing unnecessary ones (which means a trip to the groomer each time) is crucial.
This shows both sides of the mat. The top is cotton fabric, the bottom waterproof vinyl. There is a couple layers of batting in between so I quilted it. The quilting allows it to be washed without the batting bunching up.

A close up of the fabric's print. He will also have a collar, snood and brush/comb roll in the same fabric that I will post about as I finish them.

Since this mat will travel with us, it has to be small enough to carry. It rolls up easily and I use some ribbon to keep it rolled up when not in use.

NOT A Morning Person

2011-02-21T12:33:00.000-08:00

I am not a morning person. If I tried to say otherwise, my family and friends/former roommates would out me in about 15 seconds. I have always hated mornings and will only talk to my dogs for the first hour I'm awake (and only because they don't talk back). That didn't change once I developed CRPS but my RSD has added a whole new dimension to my not morning personness.
Morning is one of the worst times for my CRPS. I have been hours without my meds and that definitely has an effect. Most people think I'm lazy because I seem to sleep late. In reality, I'm awake but working myself up to getting out of bed. I consider going back to sleep since I don't feel the pain as much. I stay in bed and check my e-mail, my Twitter, even Facebook while I'm working up to getting out of bed.
It takes me a good thirty minutes at least before I'm up to getting out of bed. Once I sit up, the full force of my morning, pre-med pain starts to hit me. I put on my glasses and hobble to my wheelchair. Now that I'm up all the way, all I want to do is get back in to bed. My body is screaming at me so I know in no uncertain terms my medicine needs to kick in 5 minutes ago.
Once I'm in my chair, I have to let my dogs out to potty. While I'm slow and wishing to be back in bed asleep, Lola is bursting with energy and runs circles around me while I get out in the hall. Me croaking "Oh Lola" is a daily occurrence in the morning. Once I get them in their downs, they wait while I open the door to let them out. Once I release them, they both go dashing outside and act like fools until they remember they are out there to potty. I watch them while they are outside then let them in.
Once we all are inside, I go to get a glass of apple juice, let the girls get a drink of water then go back to bed for a while. I don't go to sleep, but it does give my body a rest and time for my first dose of medicine to kick in. I work on my computer or read a book until my pain goes down to its daily level.

What a Doctor's Appointment Should Be Like

2011-02-17T20:45:00.000-08:00

It was a busy, crazy week since my last post. I've been working on a lot of sewing projects, which I'll post about later. It exhausted me and by the time I could blog, I was so tired it wouldn't have been coherent or worth reading.
One of the big things was my appointment with the cardiologist to see if they had an idea about my fainting spells. New doctors are always a source of stress for me. So many of them have a negative opinion bout CRPS and those who are diagnosed with it that it can be scary going in to an unknown. I haven't had a great track record and you can see one of those incidences in a previous entry about a neurologist.
So we get there, do the weight, blood pressure, etc and then head to the room. The nurse did an ekg and asked briefly about my meds, medical history and why I was there. Then the cardiologist's PA came in to talk more with me about why I was there. She had never heard of CRPS by any of its names so I had to explain about that. Then we went on to my fainting, when it happens (when I get hot or get hot and stand up) and if I have any other cardiac issues. Then she had me lay down on a table (getting up there was a challenge) and took my heart rate and blood pressure. After that, I stood up and had to stay standing while she took my blood pressure and heart rate. She also got to see how poor my balance was since I can't stand without wobbling and swaying. My heart rate shot up almost 40 beats per minute but my blood pressure didn't rise as much. She was a bit baffled since I didn't fit the text book for anything. Despite that, she was very friendly and easy to deal with. She was also an animal lover, so we hit it off well.
Then the cardiologist came in. He talked with me some more and did actually know about CRPS. He did an exam, looked over the results from the nurse and his PA then talked to me about what it could be. His two main suspects are vasovagal syncope (also known as Neurocardiogenic Syncope) or POTS, both forms of Dysautonomia. He put me on clonidine to see if that helps for times when I can't avoid getting hot. He does think it is related to my CRPS since they are both dysfunctions of the brain. He had an echo done as well as having me wear a 24 hour Holter monitor. Beyond that, we are just going to keep an eye on it, although he would like to do some other tests after my pump implant.

Unexpected Break and Getting Sick with CRPS

2011-02-09T20:33:00.000-08:00

I didn't mean to or expect to take a blogging break, much less one this long. I was busy with some craft projects (but that is another post) then managed to catch one of the viruses going around. That knocked me on my arse but also gave me something to write about.
When a normal, healthy person gets a virus, they feel crappy for a couple days then get better. Within a week, they have pretty much forgotten they were sick as they are back to their normal, busy routine. For those with CRPS, it isn't so easy or so quick.
Since I developed CRPS, my immune system has sucked. If you so much as look at me and have come in contact with something, I'll catch it. My already not superb immune system is now on vacation apparently. Once I catch something, I'm going to get the full force of the virus too. None of the 24 hour bug thing any more.
Ok, so now I have the virus and am in bed wishing all people with contagious crap would stay home when they are sick. For most people, that is the end of it. For me, it isn't. When I get sick, my entire body goes in to chaos. My CRPS flares so predictably when I'm sick, I'm not even surprised any more. So on top of any body aches that might come with a virus, I have extra CRPS pain. I'm exhausted. More than just sick exhausted, I sleep pretty much all day. Doing more than heating up soup is too much and that is pushing it. Most of the time, I get nauseous from all the meds so only soup for me.
Once I finally get over the virus, my CRPS doesn't go back to normal. It stays flared for quite a while and that in itself is exhausting. So even after I'm healthier, my body is still fighting to get used to a new norm. For this past virus, my hands were seriously affected as well as my legs to a lesser degree.

This is All Real

2011-01-23T21:38:00.000-08:00

Before I begin the post, an update. The last little bit has been pretty rough. my sleep schedule has gone totally out of whack, my CRPS has been flaring like it never has before and I've just been plain exhausted. After trying to get done what I need to in a day, by the time I'm ready to blog I don't have the energy to do it coherently and I won't subject y'all to my incoherent ramblings that I wouldn't even remember the next day (yea, the memory loss has been kicking my arse too).
I'm going to be referred to a cardiologist for the fainting spells I'm having. We finally got a date for my pain med pump implant (see the ticker over in the side bar) which is April 19! But my psych and doctor both want me to have this fainting deal worked out before surgery. They both think it might be dysautonomia but want a cardiologist to see me and do the whole workup.
Ok, now on to the point of the post.
This week I got a very plain looking envelope that was very exciting for me. I saw 5 letters at the top of the return address: CARES! My information about training had finally gotten here! It is now totally official, I am going to start training with my new service dog March 17, which also happens to be my birthday. I can't think of a better birthday present.
Now, I knew the date before I got the packet and I've known the approximate time for months. But actually getting that envelope with all the information contained inside made it so much more real. I've been buying things for my new dog like brushes, combs and grooming spray, but that didn't make it as real as these pieces of paper. Now every bowl, every tool, even the new leash I'm buying make it all seem that much more tangible.
On Monday we send our deposit off that basically says we are coming to training for sure. We are finally under the 2 month mark (barely, but it still counts). I try not to wish any time away but man, I am ready for March to be here. I want to know what color he is, what his name is, his personality! I'm so ready for that first glimpse of him that I can barely stand it. My partnerless days are almost done and I just can't wait!

Missing

2011-01-12T21:57:00.000-08:00

I've debated whether I should write this post. But this blog is about my life with CRPS/RSD and that means the happy as well as the sad.
I don't think about all the things I miss too much. It just isn't very productive and will bring me down, which is something I try to avoid. But it isn't something you can totally avoid either. I'll see a commercial for a cruise or watch a show about a cruise line and think "Man, I would love to go on a cruise!"
But then I stop and realize that a cruise might not really be that much fun anymore. How accessible are the rooms? the halls? the decks? the pool? Could I park my wheelchair near enough to the pool to get in but far enough away so it doesn't get wet? I couldn't do many of the attractions. Do they have a beach wheelchair? How many? How long can I get it? How much does it cost? Can I teach my service dog to potty on fake grass on a small space? I've been on a cruise before and remember how much fun I had. But now, it would take so much planning and questions and worry. I miss being able to think about what I would love to do and know that it is an easy thing if I decide to do it.
I miss living on my own. I miss doing things like cooking, even cleaning for myself. I was very independent before I got sick and loved every minute of it.
I miss being able to easily go out with my friends. Even a year ago, all I needed was a ride somewhere and I could go. I could go to anyone's house, ride in any car and be fine. Now I can't go to anyone's house because most houses aren't wheelchair accessible. Because we don't have a van my friends either have to drive our truck and push my heavy electric wheelchair up on the carrier or push me around in my manual chair. I'm under no illusions, going out with me takes work. I'm just lucky I have friends who are willing to do that work to see me still.
I miss my friends. Before I got sick, I was always up for going to see them, constantly calling to see who wanted to do something on the weekends. Now it takes planning days in advance so I can save my spoons to be able to go out. And even then bad pain day might ruin my plans and force me to cancel. Talking on the phone is hard for me since I have a lot of trouble thinking of the words I want to use. I much prefer communicating through text because I can read what I wrote and have time to find the words I need. My bad memory combined with my short window where I can type a mostly coherent e-mail easily means I often forget to e-mail those who I say I will. It's hard for many people to understand when i don't look visibly sick and the biggest problem is pain. I know some have to wonder if I'm just being whiny or over dramatic but I can't change those things so I don't worry about them.
I miss walking. I used to love going on walks with my dogs. Dixie's favorite walk was by lake in the town I used to live and when we got to the lake, I would put her on her long lead and let her go splash and swim in the water while I sat on the bank watching her. I miss walking around the house, going up and down stairs when I needed to. I miss using my arms to do anything I need. I was a vet tech who could lift a 70 pound dog myself before I got sick. Now there are some days I can't even brush my hair. I gave Lola a bah last week and it put me in bed for 2 days. I realized that even bathing my own dogs, who are exceptionally good in the bathtub is no longer an option for me (which is really bad because Dixie needs a bath desperately at the moment).
I miss not living in pain. I still remember a psychologist telling me that it was a very bad thing that my CRPS was the center of my life and me thinking that he obviously knew nothing about this disease or being in constant pain. Everything I do revolves around my pain. How much will this make me hurt? What can I do to lessen that? What can I not do today so I save some spoons and don't hurt worse? I miss my memory, which used to be great. I remembered tons of formulas to figure out proper drug dosages. now I can't remember what I did yesterday.
I miss so much. But I'm not angry about it. Anger takes so many spoons and has so little to show for it. I was angry when I first got sick. I still do get angry sometimes. I'm sad about what I've lost but I've also gained. I've met many new people, my life has new things I'm passionate about. I don't know what I'm going to do with the rest of my life (a behaviorist with a crappy memory isn't a good thing) but I know I will find something, even if it is just this blog. While I do miss my old life and I do look back on it, I'm also looking forward to what may happen. In 2 months I will have a new Standard Poodle partner. Eventually I'll have a pain pump which will help regulate my pain. Who knows what else is in store?

Prialt Trial

2011-01-04T19:31:00.000-08:00

Today I had my Prialt trial to see if this med will work and we can continue on and get the pain med pump. It almost didn't happen thanks to an insurance snafu. We got a call yesterday that the insurance company wouldn't approve the trial (yes, the day before) until they spoke to Dr. H. of course it was his day off, so they had to try and find him to get them on the phone.
I didn't bother to set my alarm since we likely wouldn't be leaving early enough for my original appointment at 10. Around 10 my dad woke me up and said that after he, the doctor's office and Dr. H had tangled with the insurance company, they approved it and we needed to leave ASAP. I threw on some clothes, Dad let the girls out to potty while I finished getting ready and off we went! They wanted to try morphine before this and apparently missed that I was very allergic to morphine even though it is on all of my records.
I got there, they checked me in and took me back relatively quick. dad had to work on the insurance stuff a bit more so I was on my own in the room before the procedure, which was fine. I signed some papers, spoke to Dr. H and then a nurse came to whisk me off to the procedure room. I had taken some ativan because of how bad the last procedure was and to help me stay calm.
They prepped me, got me in position (and were very good about checking to make sure my incisions from the gallbladder surgery weren't hurting at all) then called Dr. H in. He numbed the area, then put a needle in and numbed the deeper tissue. After that he injected the lowest dose of Prialt and pulled the needle out. We were done and it was so easy! Much, much better than the SCS trial. Even the lidocaine (numbing) injection was easier this time.
Then began the wait. We had to wait to see how the medication worked on my pain. We waited for hours and I got down to a 6! I haven't been at a 6 in...so long I can't remember. We were finally let go and I walked 3 steps to my wheelchair all on my own. Of course, my balance still wasn't great but those were the easiest steps I've taken since my CRPS spread to my legs. I will always be wheelchair dependent but my steps will be easier and I will be able to walk more.
The biggest sign of how well this worked is after my nap I took when we got home (sleeping off the ativan) when I woke up. I woke up in so much pain, which is my norm. Before I went to sleep, I wasn't in that pain. That means this stuff works better than anything we've tried. I also had no side effects and no allergic reactions, which was a big worry for us.
Now we just have to wait for insurance and to get the date set for the permanent implant. I'm going to keep seeing my pain/CRPS psych and just hope that I get a surgery date soon (hopefully before I go to Kansas to train with and get my service poodle)

The Internet and Why I Love My Mac

2010-12-30T19:32:00.000-08:00

I love my Mac. I tell people that all the time. When I hear people saying that technology is ruining the world, I shoot them death glares. Although those who know me don't say that. They know how important technology is to me.
CRPS disables me and has changed how I interact with others. I can't just hop in the car and go wherever I want any more. It is hard for me to talk on the phone because of my problems speaking and finding words.
I've mentioned before I use instant messaging to talk to two of my best friends most nights. I use Facebook and their chat feature to keep up with other friends. E-mail obviously helps me keep in touch. Even Twitter helps me keep up with friends.
But the internet and my Mac has helped me meet many new friends. I'm a part of many message boards, oe for pet, one for poodles, two for service dogs and a couple for CRPS and the pump. Facebook groups for service dogs and my disease have allowed me to meet many more. I've met many people on all of these boards who have become good friends. We've gotten to know each other, celebrate and worry about each other. I chat with these people, make sure they are ok on bad days and they do the same to me. Most of them I haven't met (though I hope to change that) and they live all over the country. But they are just as important to me as my "real life" friends. One of my very best friends is someone I met on a message board.
I've also met people on Twitter who have become friends. We check on each other, think and worry about each other during bad spells and rejoice when we hear good news. I check Twitter multiple times a day and frequently have conversations with my friends on there.
Even my blogs have helped me meet friends. We start following each others' blogs, then start chatting more via comments and what not and wind up friends. I actually hope to meet some of my blog friends in the coming year and am really looking forward to that!
So yea, I love the internet and my Mac. I think they are some of the best things invented. And I am so grateful for all of the wonderful, amazing friends I have met because I have them!

Decisions, Decisions: Assistance Dog Blog Carnival

2010-12-28T20:09:00.000-08:00

The Assistance Dog Blog Carnival was created by Sharon at After Gadget and this round is being hosted by L^2 at Dog's Eye View. The topic for this round is Decisions, which I love. Definitely a great topic since there are so many decisions one makes related to assistance dogs.
I decided to talk about three big decisions I made related to my assistance dogs. The decision to retire Dixie, the decision to go with a program and not owner-train again and the decision to apply to CARES for my service dog.
The decision to retire Dixie was one of the hardest and most heartbreaking decisions I have ever made. Even with my foggy memory I still remember in vivid detail a conversation with my aunt in her car the fall of 2009. We were on a highway near my house going to a movie and Dixie was in the floorboard at my feet, taking a little nap. My aunt asked me what would I do when Dixie retired and I told her I hadn't really thought about it but that I had time since Dix would be working for years to come. And I believed it.
Fast forward to May 2010 and things were changing. Dixie has always been a very eager to please dog, always doing what I want almost before I could ask for it. She loved her work and was a fantastic service dog. She had become something of a celebrity in the community and was changing many people's perception of pit bull type dogs.
Then one day she started misbehaving on the job. She let out a bark in a store. I was totally flabbergasted but thought it was a fluke. We took it easy that week, not going out much and just playing and being lazy at the house. Things seemed to be back to normal. We went back out again like normal and Dixie jumped up at a guy to greet him in a store, something she had never done on the job even during training and knew was a no-no. We went to get pedicures and she was not listening to me, wasn't behaving like she would, wouldn't sit or lay down when asked. Something was very wrong and everyone knew it. This wasn't my Dixie.
We took her to the vet and the initial appointment didn't find anything. Bloodwork was normal, she wasn't. The a couple days later I noticed a slight limp when she was running. And then it all came together She has a low grade luxating patella that was irritated by her work on hard surfaces. Crate rest brought back my Dixie. The decision was there. As an assistance dog handler, you always think first about your dog, your partner then yourself. It broke my heart, but I told my parents that Dixie was retired, that I would be going out alone from now on.
For me, the decision to retire was no decision. I couldn't keeping working my girl knowing it was hurting her. And she didn't love it any more. That last couple weeks, she wasn't excited to see her pack, she wasn't happy and bouncy going out to the car. I still miss working with her. Our partnership was easy, it was comfortable and I was secure knowing she would take care of me. But she is still here and she is happy. She loves retirement and is a very spoiled member of our family.

The next decision in the process was whether I wanted to owner train my next service dog. Getting another service dog was, for me, a non-issue. I knew I wanted another service dog, I loved the freedom having a canine partner gave me. Deciding whether to owner train was kind of made for me. My CRPS was progressing rapidly and I knew after raising Lola while I was healthier that I was not up to raising a puppy and then going on to train tasks and public access. So I decided to trust someone else (well, someones else) to raise and train my service dog.

So that began the last decision I will discuss and one of the most important decisions I've made. I knew I needed a mobility dog but I also wanted the dog to know some medical response tasks. I had to find an organization that wouldn't penalize me for having pets since giving up my family wasn't an option (and yes, my animals are my family). I needed someone who would give me a dog regardless of living in North Carolina.
I researched and researched. I made a list of programs that fit my first two requirements then started researching them more in depth. I was able to eliminate a few because they said on their website they didn't allow a dog to be placed in a home with other pets. Then I started e-mailing programs, explaining my situation, my disease, what I needed and my household. More were eliminated because they didn't think they had a dog for me or they wouldn't allow a dog to be placed in a home with pets.
I narrowed it down to three organizations and after discussing things further with each, I chose CARES. They were able to train a dog for exactly what I needed, they would place a dog with me (of course, my vet had to be one of my recommendations) and I just really enjoyed how professional and quick their responses were. I got no canned responses, theirs were long and answered everything I asked (and things I didn't). Not that canned responses to an initial inquiry are necessarily bad, it just impressed me how detailed the initial response was and how they answered all my questions. The more I learned, the more I knew the right decision. I applied and was later accepted.

Finally Back to Blogging

2010-12-26T20:23:00.000-08:00

Much has happened since my last blog and I have a ton to write about. But I'm going to try and do things in order (and write about the things that happened least recently so I don't forget too much) and hopefully catch up soonish.
Well, I had the hiadal (no clue how to spell that) on Monday and it set off a gallbladder attack which sucked. I was sure that since I had that awful pain (and I do mean awful--it can make you forget you have CRPS in the midst of an attack) and the accompanying nausea, the scan would show something abnormal. But no, my function was normal. The second I heard those words, my heart sank and I started imagining yet another months long road of trying to figure out what was wrong with me and how I could fix it.
Then my doctor said a wonderful word. "But." But since I was having so much pain and nausea as well as knowing I had stones and sludge, surgery would be a viable option. Not an emergency because my scan showed it was still functioning but they would do it if that was what I decided. After discussing it with the doctor and my family, I decided to proceed since the doctor thought a stone was trying to pass the bile duct and causing some of the pain. They couldn't do it Monday or Tuesday, was Wednesday ok?
Of course it was! Only having to wait 2 days for relief? Definitely ok. For once, things were an easy fix. We got as much done for Christmas on Tuesday and found out I had to be there at 6 AM for my surgery Wednesday. I also had to go through the same bathing routine as I did for the SCS trial, which meant I had to get up early enough for a bath Wednesday morning. In case you didn't know, I HATE mornings. Don't want to look at anyone, don't want to speak to anyone, don't want to hear anyone.
We got there and after changing in to a oh so fashionable hospital gown and shoes and telling my meds, allergies and diseases a couple times, they wheeled me back to the prep room. It was chilly and since I had mentioned that my RSD made me really sensitive to cold, when I asked for a blanket,I got about 14 warmed blankets on my bed.
Then the anesthesia team came in and put in my IV. Apparently it has become protocol to numb IV sites before inserting the catheter before a surgery. this is the second time I've had it done since November and would honestly prefer them to just do it as the Lidocaine stings more than the insertion hurts. The anesthesiologist doctor came in and I found out I had gotten very lucky. He had cared for a girl with severe CRPS before and knew all about it. He knew about my high tolerance, the pain of touch and everything, even how you become desensitized to being in pain, so much more than I expect medical professionals to know. I didn't know how lucky I was until after the surgery.
The surgery went well, they did it laproscopically so I have 4 small incisions instead of a huge one. After surgery I was in serious pain. The nurse who was helping me after was following protocol, giving me delaudid in .5 mg doses. That wasn't cutting it and we quickly got up to 5mg, which is usually the max and I was hardly feeling it. Fortunately, my wonderful anesthesiologist doctor came in and explained all of my issues, told him to go as high as 10mg and to go in 1 mg increments. Of course, that still didn't get things under control like they hoped (and I don't think my doctor expected it would) so they put me on the IV pain med pump with the button. Oh, I LOVED that button. After some button pushes, my pain was getting controlled and they decided to move me to my room. Through it all, I noticed that for the first time in over a week, I wasn't nauseous! On the way, the pain pump broke with an error the guy had never seen before. Yes, my curse on electronics goes that far.
I got settled and checked my e-mail, texts and what not in between button pushes. My awesome nurse and nurse's aide came in to introduce themselves and check on me, then lunch was brought. The first day was all liquids, so I had potato chowder (strained), juice and sherbet. After lunch, my older cousin and uncle came to visit me. My cousin brought me the book Dewey about a library cat. She bought it because the cat looks just like my Karma! They stayed and talked for a while and then left so I could rest. At that point my pain was under much better control and I was ready for a nap. I napped for a bit, then was woken up for the blood pressure check. Dinner came soon after that (chicken soup strained, juice and jello) as well as button pushes. I read, watched tv and played on my phone until I dozed off.
It was not a great night since I was constantly woken up by pain, the nurse and my IV machine going off. Around midnight they got another error message they had never seen and had to get a new one. My no nausea streak continued and I was allowed to get real food for breakfast. I had some yogurt with granola and fruit and a cinnamon roll as well as some juice. My doctor came in an hour after and said that I could go home and my only restrictions were no greasy or fatty foods! The meant I could eat Christmas Eve dinner!
I was released with a prescription for pain meds and was ready to go home. I got home, drank some juice and went to sleep after taking my meds. Since then I've been dealing with the pain (normal after surgery, especially for me) but have not been nauseous at all and have been eating real food. For once, something health related was a relatively easy fix!

Another Complication

2010-12-15T15:12:00.000-08:00

So I had a lot of things I wanted to write about, but those were all pushed aside Saturday night when I had an episode of severe stomach pain and vomiting. I've been ill ever since and living on Phenergan and chicken noodle soup.
This happened this summer and they did an ultrasound in August which found gallstones (although no one ever told me) and an ultrasound this week showed stones and sludge. Because I have been so sick, my PCP referred me to a surgeon to have it removed.
I saw the surgeon today and he said he wasn't convinced it was my gallbladder, although when I asked him what it could be he gave a generic GI answer. I have most of the symptoms and my PCP felt sure that is what is causing my problems.
So now I have to get a gallbladder function test and then am having a follow up with a different surgeon in the clinic on Monday. This surgeon has worked on multiple members of my family and comes highly recommended.
Any time I'm sick it irritates my CRPS. That plus the cold weather has made for a pretty crazy flare up. It may also be why I am so ill from it. Hopefully I will be able to get back to blogging more regularly and the doctors will confirm this is my gallbladder and fix it.

Christmas Cards, Gifts and More

2010-12-09T20:48:00.000-08:00

So I try to do as many things as I can that are what i would be doing if I wasn't sick. I've had to give up a lot but I've discovered a lot of the things I'm adamant I won't give up revolve around Christmas. Many of my favorite memories are from the holiday season.
Last year I started making my own Christmas cards. I couldn't find any I like so I decided to make my own. Not that hard, or so I thought. But I loved every minute of it and got such a great response from them that I decided I would do it every year. They are photo cards and they always have the animals involved. This year all four of the herd is in the picture. I'm also trying my hand at heat embossing this year, although I might want to kick myself for taking up yet another crafty thing by the end of it. And, oh yea, I just started making them this week (the photos were done a while ago). I do a card exchange and this year is one with my RSD friends, so I'm excited about that. And of course I love sending them to all my other friends! It doesn't get any easier to make these but I just won't give it up because I enjoy it so much.
I'm also participating in secret santas this year. I have been a part of at least one for years now I always have such a great time. First waiting to see who I get, then shopping for them (and often their pets!) then sending the gifts off (with xmas card of course!). I love hearing what they liked most, what they've already used and what their dogs or cats played with first. I love shopping for my friends, especially when I find those really excellent gifts that you are excited for them to open.
Every Christmas Eve, our family hosts a big dinner for our family and friends. This is by far my favorite thing about Xmas and many of my best memories come from this dinner. Last year I had an appointment at the Mayo Clinic in Jacksonville Florida in the morning and I was determined my mom and I wouldn't miss dinner. We drove straight home, stopping only to let Dixie potty, and we made it. There is just something about that dinner with all of the good food and the people I love being around, laughing and talking that can't be beat. I don't care how exhausted I am, how much pain I'm in, this isn't something I will give up.

Book Review: The Lost Dogs

2010-12-05T17:43:00.000-08:00

Anyone who knows me knows my dogs are a huge part of my life. Even at my sickest, I'm making sure my herd is being taken care of. they move with me, they sleep with me they make my life better. Lola is a pit bull and Dixie is a Catahoula/pit bull mix. I love pitties. My family will probably always have at least one. Like most pittie owners, I'm also a breed supporter and activist. I try to help fight Breed Specific Legislation (which, by the way, doesn't work), I educate people about how awesome this breed is.
I followed the Bad Newz Kennels/Micheal Vick story closely. I hoped that these dogs would have a champion, that somehow someone would stand up for them and fly in the face of tradition and at least see if these dogs could be saved rather than just killing them all. And it happened! People spoke up against big organization who said these dogs could not be changed and should be killed and the court decided to allow evaluation and dogs who passed were allowed to live. And live they did.They showed the world that dogs are resiliant, that they can go beyond their past and be wonderful, happy pets.
Jim Gorant wrote an article about the after they were sent to the various sanctuaries and rescues. Of course, I read it. Everyone was pleased to see the dogs portrayed in a positive light and living with foster and forever families. But he didn't stop there. He went on to write The Lost Dogs about the case and, more importantly, the dogs and how they did through all of this. He did a great job compiling information, describing the case and conditions the dogs came from as well as following many of the dogs on their various paths to recovery. He talked about all of the wonderful people who were dedicated to helping these dogs. He didn't gloss over the sad or ugly details, he presented them along with the rest.
I went from anger at how the case was handled and the lack of punishment for Vick and his cohorts to joy and sadness as I "followed" the dogs through their recovery and, in same cases, early passing. I laughed, cried and thanked everything that my two girls wound up with me and not someone who would treat them cruelly. I had a renewed sense of how unfair it is that Vick has everything back: the fame, the glory of being a pro football player, the life with millions of dollars and how he never was convicted for animal cruelty. I was again amazed at how resilient dogs are and how they could trust people after everything they had been through.
Jim Gorant is not an animal activist, he's not an animal writer, he is a sports reporter who loves dogs. He is an average guy and I think those things contribute to why I think this book can do so much for pit bulls.
I think everyone should read this book. It is provides an eye-opening look at small town justice, dog fighting and most especially, pit bulls.

Le Tired

2010-12-03T17:32:00.000-08:00

First, see this video (some profanity, much hilarity) for the title reference. I know at least one person will get it :-)
I am mostly recovered from my surgery. The incisions barely left a scar (thank goodness they were able to avoid my tattoos, I prefer to not have them messed with) and you wouldn't know I had been through that awful time if you didn't know me.
But the after effects are not behind me and likely won't be. I now have a place on my back that is extremely sensitive to touch and movement and cold. Yea, that burning, aching pain has spread again. My legs are definitely worse and that has made walking my usual couple feet a challenge. I guess I could be angry, but I knew, probably better than most because I am a total research hound, that this could happen. I heard from people whose surgery didn't go well, I heard from those who life was changed. The risk was worth it. Even now, on the other side, it was still worth it. I know it doesn't work and now we can go on to the next step, the intrathecal pain med pump with Prialt.
For me, one of the worst side effects of getting worse is the exhaustion. I don't know why but every time I get worse I lose so much energy. I guess my body is adjusting and that is exhausting. I sleep late (which does not please my dogs although the cats think it is perfectly ok) and still need a nap nearly everyday. I'm a person who likes sleep and feeling tired all the time does not leave me in the best of moods all the time. I'm hoping my body adjusts soon because I'm over being le tired.
ABC Family has started their 25 Days of Christmas. I admit, there are so many things I plan to watch. My all time favorite is the claymation Rudolph, Kris Kringle and other movies. I watch them every year without fail. They were on Tuesday at the same time as Glee and I was definitely flipping back and forth trying to catch both. I go out of my way to watch them any time they are on and it never gets old. I can't remember a Christmas I didn't do that. My Mowie (grandmom on my dad's side) had them on video and I was constantly sticking them in the VCR as a kid.

Thanksgiving

2010-11-25T09:18:00.000-08:00

Here in America, it is Thanksgiving. I can tell you this Thanksgiving will be better than last year even though not much has happened yet. Last year I had the stomach flu and was so miserable I couldn't eat any of the yummy food.
In a rare moment of calm, I have all 4 of my girls here on the bed with me. Now, there isn't much room for me with 2 over 50 lb dogs and 2 cats who take up far more space than you would expect they could but I love it. Lola spent my surgery week at her doggie daycare so my life was missing a little bit of happy, crazy pit bull-ness until she came home. I am thankful for all the wonderful animals in my life. I am thankful that next year, there will be a big fluffy poodle boy taking up even more space on my bed.
I've gotten texts, Twitter and Facebook updates from all of my wonderful friends wishing me a happy Thanksgiving. My friends have helped me through so much. I daresay I wouldn't have made it through all the challenges like has thrown me this year without them to listen to me, talk to me and care for me like they have. Many of my friends I haven't met in person (although I am working on changing that constantly) but that doesn't seem to matter. Whether I met them because of a blog, pets, Poodles orCRPS/being sick, I love and appreciate them all. I am so very thankful for all of my wonderful friends.
My family has been through a lot this year. CRPS is not just a disease of the individual, it is a disease of a family (and friends). They have driven me to countless appointments, bought me many assistive devices and run thousands upon thousands of errands for me that I couldn't. They have cheered me on, fought for me and supported me through so much. I am thankful for my family.
I have a wheelchair sitting right by my bed that is fitted to me. I have special silverware, canes, walkers, microphones, all to make my life easier. They give me freedoms I lost when I got sick. I am thankful for all of my assitive technology.
I have some of the best doctors in the country for CRPS. I have a doctor who knows more than most about how to help my pain as well as one who can help me keep my mental state healthy. They work very hard to give me a better life and don't give up when things get hard or don't go according to plan. I am thankful for everything they have done and everything they will do to get me healthier.
Having CRPS has taught me so much. The lessons I have learned from being in pain, being disabled and going through so much medical-wise are priceless. I am thankful for what I have learned.
I am thankful for so much. I could go on, but it would make this post ridiculously long. So I will end here and say, for my final thankful, that I am so thankful for all of you who read this blog and help get the word out about CRPS! I hope everyone has a wonderful Thanksgiving!

Disability Words/Phrases I Hate

2010-11-24T22:19:00.000-08:00

Everyone has words or phrases that grate on their nerves for one reason or another. For me, a lot of those words/phrases relate to pain or disability.
The negative connotation that goes with the phrases "using _____ as a crutch." Why is a crutch, which by definition is an aide, such a bad thing? My wheelchair is a type of crutch. Does it harm me in any way? Hell no. It gives me the ability to go so many more places on my own and not make my pain worse. My service dog will be a crutch. He will give me even more freedom and leave me relying less on other people. Doesn't sound bad, does it? So why make a crutch a bad thing? Why not say something is hindering a person instead, which is what people mean in the first place!
The term "handicapable." I loathe that word. Differently abled is another one. It is one of the few things in Glee I hate. The words themselves are trying to mask handicap and disabled. Why? Why is it so bad to say I have a handicap or that I am disabled? It isn't anything to be ashamed of. It is a part of me just like my red hair, freckles or tattoos are. So why try to hide it with words that are trying to hide it or patronize it?
I think for our society to become more accepting of people with disabilities, we need to stop making up these phrases and using disability related phrases in a negative context. If you think about it, there are so many.
And it is the same way for pain. No, pain is NOT a sign of weakness leaving the body, it is a sign something is WRONG. It is your body's way of communicating injury or other problems to you. Ok, well, in my case, my brain interprets everything as a problem, but it doesn't make me weaker because I acknowledge it and try to make it go away. In fact, ignoring it would make things much worse.

The Next Step

2010-11-23T19:52:00.000-08:00

I went to see my doctor today for my follow up to the spinal cord stimulator trial. If things had gone well, we would have been removing the implant today and discussing permanent surgery. But that isn't how things worked out.
When Dr. H came in, we started to talk about the trial and I told him what went wrong and what led up to the early removal. He is a great doctor and I love his bedside manner, although apparently it is low rated on patient review sites. He does have a very sarcastic, deadpan sense of humor, which is right up mine and my family's alley. We never leave the the room without having a laugh.
Anyway, as I explained things, he totally understood. He said that he has had it happen and that unfortunately it does happen. We knew going in and were fully prepared for it although we hoped it wouldn't happen.
Once we finished talking about the failed trial, we started to talk about the next step. He has a Hail Mary in his back pocket for cases like mine. It is called an intrathercal pain medication pump. Basically, there is a hose going to my spinal column that is also attached to a pump with a pain medication in it. The pump releases meds straight to the spinal cord so they can use much less to get the effect. Before they do that, they do a trial of the medication. That trial is much less involved than the stim one was. Basically, they inject the medicine in to the area and keep me at least all day to make sure there are no adverse side effects or allergic reactions. The medicine they want to use on me is a non-narcotic called Prialt which is derived from Cone Snail toxin. Everyone is really optimistic about this.

SCS Trial In Depth

2010-11-21T17:33:00.000-08:00

L^2's comment on a previous post reminded me that I meant to explain more about the spinal cord stimulator but just never got around to it. So I'll do it now since my trial was ended early.
Before I begin, I'll update about how I'm feeling. I'm still painful but not as much as I was this past week. I still can't bend or lift anything more than a couple pounds (including my laptop) and sitting up reminds me that my back is still hurting. I slept much better last night and haven't thrown up since yesterday.
On to the spinal cord stimulator. There are two parts to this implant. The first is a short trial and the second, if the trial goes well, is permanent. The SCS works through electrodes that are placed by the spinal cord via a large needle. Before they do that, they numb the area with lidocaine (which stings like crazy) to make it easier.
For the trial, you are sedated and they wake you up once the wires are placed, the rep turns the external generator and starts asking questions to see where he sensation is and where it needs to be and isn't. They work on different programs on the device and the doctor moves the leads if necessary. Once they are done, they suture the wires in place (yes, the ends of the wires are sticking out since they attach to the generator outside of the body. Once that is done, the send you home for 1-2 weeks (usually closer to 1 than 2) to see how it works. You are supposed to try and do as many of your normal activities to make sure it works well. Insurance companies won't pay for a permanent device unless there is 50% or more pain relief.
After the end of the trial week(s), you follow up with your doctor with your pain journal and discuss whether you go the necessary pain relief. If you did, then the permanent surgery will be scheduled. The permanent surgery is similar except that the generator is implanted and you get a small remote to control the level and type of sensation.

SCS Trial Days 4, 5 and 6: Where I Learn it Can ALWAYS Get Worse

2010-11-20T20:08:00.000-08:00

So, I meant to write every day about this trial, but since things didn't turn out the way I'd hoped it would have made for a pretty dull blog. Not to mention I'm exhausted and my memory and cognition are worse than usual.
Wednesday was mostly spent in a drug-induced stupor. My back was hurting and the stimulator had to be turned up so high to mask the pain that it was just as bad as the pain itself. The pain got worse in my legs to the point where they tremble and nearly collapse under me.
Thursday we decided to go back in to the doctor and have the programs adjusted to see if that would make it bearable. We spent a good hour in there changing things to see if this trial could be salvaged. I tried the new programs with the same results, when it is high enough to mask the pain, I was so uncomfortable it was redundant. Unfortunately, Thursday was the day when things really started to go downhill. My back started to hurt worse and I couldn't sleep for very long without being woken up by pain.
Friday morning I woke up nauseous but thought it might just be a bug. Unfortunately, the minute I stood up, I found out that it was from pain and started throwing up. This went on all Friday and through the night. I have been living on pieces of toast and ginger ale.
Around 8 am this morning, we decided to call my doctor, the SCS rep and go to the emergency room at the hospital the surgery was done at (an hour 15 minutes away). At the ER we were taken back right away and after talking to my nurse they started an IV and gave me some delaudid. Once the doctor saw me, they called in my doctor's fellow who participated in my surgery.
He said that in some rare instances, the stimulator can make things worse instead of better and he thinks that is what happened to me. We decided to go ahead and pull the stim since it was doing the opposite.
So the stim is gone, the trial is failed. My doctor has multiple back up plans so there are more options, thankfully.
This week has not been fun. The pain and nausea obviously made me miserable but I haven't been able to do much of anything. I can't feed the animals or let the dogs out. I can't make my own food, do my laundry, etc. Pretty ironic that the thing that was supposed to make me more independent actually made me less independent.

SCS Trial Days 2 and 3: Expectations and Reality

2010-11-17T19:10:00.000-08:00

I had planned on writing every day of m trial for the spinal cord stimulator. I thought I would be writing of how much better I felt, everything I was able to do and all the fun times I was having. I thought I was doing a pretty good handle on my optimism, not letting it run away with me. But my doctor has had so much success, I've talked to so many people who have had their lives improved drastically.
But that isn't what I'm doing. I'm spending most of the day in bed, drugged to keep the pain from my surgery site down. I'm getting little relief from the stimulation (definitely well under the 50% mark where the permanent unit would be implanted). The only way to get relief is to turn the stim up so high that it is miserable (like sitting on the world's largest jackhammer inside of a huge subwoofer turned all the way up. That makes the implant pretty redundant.
The pain keeps me nauseous so I have to take more medicine that makes me sleepy. I can't sit back or lay on my back because it hurts so much. That means I'm laying on my sides, which makes the CRPS pain worse. It's a vicious cycle.
We are calling the rep and my doctor tomorrow to see where we should go from here. Hopefully they can adjust things so the stimulation works but isn't so uncomfortable. If that doesn't work, it comes out Tuesday and we go on to the next option (likely an implantable pain med pump).
it's kind of funny, my animals take shifts to be on the bed with me. Lola is at daycare since she would be a bit too wild for me. Of course, she is having fun and they are spoiling her rotten. I wish I had my service dog, since he would be able to help me (and my parents) so much. I wish my grandparents (from my Dad's side) were still alive since they would be able to help and support all of us.

Spinal Cord Stimulator Trial Surgery

2010-11-16T16:56:00.000-08:00

Let me preface this with two things. 1-I'm seriously allergic to eggs (throat swelling, can't breathe allergic) and 2-I have a very high tolerance for pain/sedation meds so they don't affect me like they do most people.
I had my surgery yesterday. Apparently, they didn't look at my chart and didn't realize that I was allergic to eggs (what propofol, the anesthesia usually used is made of) so they didn't have a great plan in place to sedate me. They gave me a delaudid and did a slow titration.
It didn't do a darn thing, so I was totally awake and not comfortable. It was by far the worst experience of my life. It was so excruciatingly painful I almost threw up on the table (and I already had Zofran IV before things started) so the nurse gave me phenergan, which helped sedate me a tiny bit.
Usually, when I have a pain spike, I curse like a sailor. I was in so much pain all I could do was whimper. The nurse knew the meds weren't working, but I had 4mg, which is the max allowed. Once the stim company (ANS/St. Jude) guy was done talking to me and adjusting (at one point i told him it covered enough and to just stop, not because i was pleased but because i just wanted them to stop moving the damn wires because it hurt so much) the nurse gave me some valium because she felt sorry for me.
My back is still excruciating. My dr wouldn't give me a script for new pain meds and told me to try my methadone first, although he did let them give me some oral percocet before I left. Since the methadone didn't work and my back was still just as painful, he called in a vicoden script today. It helps some but not a ton.
The stim isn't working great for me. When the vicoden takes the edge off my back, i feel my CRPS pain again and the stim doesn't do anything. For it to mask the pain, it has to be turned up so high it is uncomfortable and totally defeats the purpose of the thing.
I spoke with my rep today and he said if it isn't better in a couple days to call him and we will meet with my dr to adjust the programs and discuss our options.

CRPS/RSD Awareness Month: Spinal Cord Stimulator Pre-Op

2010-11-10T19:51:00.000-08:00

I meant to write a post every day this month but Saturday I wore myself out and then Sunday I started feeling ill. I found out why Monday: a stomach virus. I slept all day Monday and part of yesterday.
I have my spinal cord stimulator trial surgery on Monday and today I had my pre-op appointment.
First I saw my pain doctor who will be doing the surgery. I talked to him about the fainting episodes I've been having and he wants me to start monitoring my blood pressure before and after events. Obviously, I can't predict all of them but I know that showers (even though I use a bath chair and hand held shower head) set them off so I can check then. Then we talked about the surgery and decided for the trial, we are going to do my legs, as they have been more painful lately.
Then we went off to the pre-surgery screening in the main hospital. When we got there, we were told that we didn't have an appointment, even though we were told we did. This is where I should explain I have a reverse Midas touch with electronics (other than Apple products). If I'm nearby, something will probably go wrong. At my hair stylist, my pain psychiatrist and now at the pre-op screening office all the appointments of that day or for that doctor got erased or moved to the wrong day. Fortuantely the awesome people at the desk were willing to help us out.
At first I was just going to see a nurse and do what is called a phone screening, which gets you half checked in for surgery (and is usually done on the phone). It is for people who are generally healthy and they thought I qualified. Then the nurse looked at my allergy list. I had 8 pertinent allergies and the maximum is 5. So then he pulled some strings and was able to get me in for the full screening where the desk people weren't. Apparently an anesthesiologist owed him a favor.
So I had my vitals taken, then went back to his office and went over the questionnaire I filled in. I'm allergic to eggs so I can't have one of the common injectable anesthesia drugs. Then he told me when to call to find out my surgery time (Friday between 2 and 3 pm) and the preparation before (take 2 shower with antibacterial soap and take all of my various piercings out). The we'll go to the hospital, get the IV, get some sleepy drugs and start!

CRPS/RSD Awareness Month: RSD and Pets

2010-11-05T21:12:00.000-07:00

Animals have always been one of the loves of my life. I learned to walk with the help of our family's Collie mix Roxie and was telling everyone at the age of 2 that I was going to be a vet (and kept telling them that until I got CRPS at 22). I've had pets my entire life and lived with them all but 1 year (the year I lived in the dorm at college). You can see my 4 girls in my header above. Karma is the large fluffy cat int he close up, Dixie is the spotted dog in the picture of me and her, Lola is the big black dog and Francine is the 2 colored kitten in the full body shot. RSD affects them as well.
One of the first things I had to do was to teach to them to avoid bumping or stepping on my affected areas. They learned that "Easy" meant calm down, you are coming too close to Mom's bad places or being too wild. "Move" means to quickly change position as the current one is hurting me. And a high pitched yelp means you've hurt me, move immediately (also how we taught bite inhibition to Lola who was taken from her litter way too early, but that is another post).
The cats are pretty good about not laying or stepping on affected areas as well (yes, cats can be trained and mine are). The cats always sleep with me, Karma on her own part of the bed, Francine either against my side or her favorite, around my head on my pillow. The dogs sometimes sleep with me, although they occasionally like to wander and that wakes the other dogs up. They both have big crates with nice beds for when they don't sleep on the bed (and they choose to go in there on their own most of the time. Often I find them napping there rather than with me).
How I get their energy out has changed substantially since I got sick. Before, I took walks, we played active games, wrestled, went to the lake, etc. These days, I can't go on walks, can't throw a ball or do any rough play. So we adapt. We have puzzle toys that only dispense treats when the dogs complete the puzzle (our favorite is the Nina Ottoson line). We do lots of training. I am constantly looking for new tricks to teach them. Sometimes they run up and down the halls while I watch or wrestle in the living room while I supervise from a safe distance. Lola has the most energy to expend since she is barely out of puppyhood and a high energy breed. My 13 year old cousin (who is on her school's cross country team) is working on agility training with Lola. If the stim trial is successful, she and I are going to take an agility class (with her as Lola's handler) so that they can compete. Lola LOVES agility. She becomes so focused and works so well with my cousin. When you watch them, it is obvious they are a great team and very in sync with each other. I teach Lola the basic behavior and then Abby shows her how to do it at a run and as part of a (small) course. Lola also goes to our local doggy daycare, Camp Bow Wow, once a week and gets to play and socialize with all of her canine friends. She loves all the people there and after a day playing, comes home exhausted! She also stays there any time we go on vacation. Dixie doesn't go because she is dog selective and doesn't tolerate rude dogs well. She is also almost 4 and is much more sedate than Lola.
Cats also need to expend mental and physical energy. Our cats are indoors only (it is far too dangerous for cats to be outdoors) so we make sure we have lots of fun things for them. We recently got an 81" tall cat tree with lots of platforms, tons of pillars covered in sisal rope and 2 houses as well as a hammock for the cats to play in, climb and scratch. We have other in the house. We have cat toys that move, laser pointers and even feather sticks. I also do training with my cats. I use clicker training for cats and dogs and they do great at it! Karma knows sit, shake and give kisses and Francine knows stand (on her hind legs) and walk (on her hind legs). I'm actually working on getting Francine certified as a therapy cat because she loves people so much. We would visit hospitals, nursing homes and other places and let her interact with the patients and residents! She will get to show off her tricks, get lots of love and get her energy out. Right now we are working on leash training so she is comfortable in a harness and leash.

CRPS/RSD Awareness Month: CRPS Fashion

2010-11-04T21:39:00.000-07:00

Clothes can be the bane of an RSDers existence. Even the lightest touch can cause pain and clothes do a whole lot of touching. Since it isn't generally accepted to go around naked, those with CRPS have to figure out the least painful clothing for them. You also need to consider what actions are too painful for you.
For starters, softer fabrics are better. The stiffer and/or more itchy and harsh a fabric is, the more pain it can cause. Cotton and fleece are two of my favorite low pain fabrics (in fact, I am wearing both right now!). Heavy fabrics are hard because they put a lot of weight on your body can that can cause more pain from the pressure. I've noticed dress pants can sometimes be an offender, but now they make black sweatpants that look just as nice as regular dress pants! I have 2 pairs and wear them to nice dinner, and meetings with a professional and will wear them to court if I have to go for my disability claim.
Looser is better. While I know that tight jeans and shirts are always in fashion, they are not very nice to those with RSD. A tight fitting pair of jeans can cause agony and a constricting shirt is just as bad. You can still buy nice things, just buy them in at least 1 size bigger than you actually are. You will still have fashionable clothes and look put together but won't be causing yourself pain to do so. I love loose, flowy skirts and dresses as well. The maxi dresses that are in style right now are wonderful during the summer. Now that we are in winter, I still buy loose sweaters and I am able to stay warm without the sweater causing me pain (and yes, they are long sleeves).
Think about what things CRPS makes harder to do. For me, it was on my perfect fitting jeans. They were too tight for me to easily be able to button and zip (and fit well, so they caused me a lot of pain) so I had to give up my beloved jeans. Then winter rolled around and I needed pants since cold is worse for me. I went up a jean size and with the looser fit am able to easily button and wear jeans (and it isn't obvious they are too big). Shirts with a lot of buttons can be a real pain as well, so I buy things I can just pull over me head.
Another thing to consider are your adaptive technologies. I am in a wheelchair, so I need to make sure skirts aren't too short when I sit down. I don't want people to be able to see up my skirt! I also make sure my tops aren't too low cut for a similar reason. Make sure you don't have skirts or pants that are too long if you use a cane or walker (or service dog!) as you can step on them with the cane or walker and they can get tangled.
For ladies, bras can be a big problem and are often given up on entirely. I gave up on them for a while but was very uncomfortable. I got remeasured (to account for swelling and weight gain) and then picked bras with a wide band (distributes the pressure more) and thicker straps (same thing as the band). Avoiding underwire can really help as they dig in sometimes (I found this out the hard way). Try on a lot of different styles and see which one is best for you. Use the internet if you can't find what you need locally.
Shoes have all the same things to consider as clothing does if your RSD is in your foot/feet. Buy things looser, consider the stiffness of the material, think about whether you can tie/buckle/button/snap the closure, whether you can pull up things like boots. It isn't bad to wear slippers if you need to. My favorite cold weather footwear thus far is a pair of Ugg boot knock off slippers and I wear them in and out of the house. Just make sure they aren't too tight and have a non-cloth bottom so they aren't ruined.

CRPS/RSD Awareness Month: When Doctors Aren't Working With You

2010-11-03T21:51:00.000-07:00

This isn't a fun post to write and it is one I wish I didn't have to write. Most doctors are working with you and want to help you. If they can't help you, they will refer you to a doctor who they think can help you. But there are some doctors who, for various reason, don't work with you.
Before I go on, I want to make sure people know that I know this kind of things happen outside of CRPS. I have friends who have stories similar to mine but have varying illnesses.
So far, I have only had 5 doctors/medical professionals who were not working with me. The first was at an appointment at a hospital 4 states away on Christmas Eve. We drove down the day before and were hopeful of finally getting a diagnosis. He was said to be one of the hospital's specialists in RSD. We (my mom, Dixie and I) were in good spirits that morning and were hopeful we would have a good day. I was wearing a loose, thing, soft cotton long sleeved shirt and jeans. The doctor came in after the nurse had taken my vitals and asked me about my history. I told him that, then he told me that there was no way I could have CRPS because of the shirt I was wearing and that he would need a very expensive MRI that my insurance had denied to even think about diagnosing me. It was obvious he didn't want to be there and he wasn't going to help me. We literally walked out of there no better than when we went in. I was devastated. I had endured so much travel, which is hard on me, to get that.
My run of bad luck continued in January with a doctor who obviously didn't believe me. After telling her my symptoms (and seeing that I had a service dog) she did the most painful exam I have ever had. Making me do multiple things that caused me pain that I knew didn't need to be done (as I had seen one of the others in her practice before he left for a year elsewhere). I was left in tears of pain and with Dixie alerting that I was getting ready to have one of my attacks. After the PT she prescribed was unsuccessful she told me that there was nothing she could do, sent me on my way and said she was done with my case.
She referred me to a physical therapist. The PT was a very old school lady who hadn't kept up with recent CRPS research. I did everything she told me to and kept getting worse and worse. When I mentioned this to her, she told me I would get worse before I got better. When I noticed some spreading of the affected areas, she told me RSD didn't spread. Thankfully once I saw my current doctor, he said it obviously wasn't working and to stop and just keep up some maintenance exercises.
The psychologist who evaluated me so I could get approval for my spinal cord stimulator. I walked in with Dixie and that already put me at a disadvantage. I'm a young female and he was not happy with me. He didn't listen to me and refused to call Dixie a service dog. It was obvious he did not approve of service dogs for cases like mine. He denied me.
The last was a neurologist I saw for something totally unrelated to CRPS. The minute I mentioned I had RSD, her entire demeanor changed. She was condescending and rude, asking things like why was I in a wheelchair since it couldn't be from the CRPS. Finally, I stopped and asked her if she believed in CRPS. She was dubious but said yes, her mother had it in an arm. I asked her if she believed it spread. She said no. At that point I totally shut down and my dad got MAD. We never saw her again (she wanted to do a lumbar puncture on me for headaches!).

Now, I didn't tell these to depress you. This is just something you deal with when you have CRPS. It is a poorly understood disease and just about everything about it is controversial (even its existence!). Some doctors don't know what it is, others think that people who claim to have it are just malingering. Unfortunately, this is just something that those with CRPS (or any illness really) have to be prepared to deal with. If someone else isn't blindsided by this in the way that I have been, then this is worth it. It isn't fair for people who are already ill to have to fight doctors. And if any doctors read this, please, be impartial and listen to your patients. Age, race, adaptive age, tattoos, piercings, etc don't change things.

CRPS/RSD Awareness Month: Adaptive Technology

2010-11-02T20:32:00.000-07:00

Adaptive technology is something a lot of people in the RSD world don't want to talk about. Some people think that using adaptive technologies is "giving up" or "showing weakness." I've had a doctor scathingly ask me why I was in a wheelchair since it surely wasn't because of my CRPS.
At the same time, I didn't take the decision to use some of these technologies lightly. I tried to continue on without them but it caused flares and I kept getting worse. Once I started using these things, my pain would level out and I could do more. I still work to keep my muscle and some strength.
I thought I'd talk about some of the different aids I use. Obviously, these vary from person to person and I recommend anyone considering them to discuss it with your doctor.
When my CRPS first spread to my leg, my balance got really bad so I was very unsteady and was falling or nearly falling pretty frequently. My family had a walker left from when my grandmother lived with us, so I started using that. I added fleece padding to the handles to try and make it easier on my hands since it hurt to use the walker. My walker had wheels, which meant it didn't have to leave the ground, which is nice since it reduces the fall risk even more for me. I used the walker as long as I could but it was terrible for my arms and caused some of those seizure-like attacks I've talked about before. Now I use it on my bad days to walk in my bathroom because my wheelchair doesn't fit.

These are my padded handle silverware. It really hurts to hold and use regular utensils so I switched to these. I can't tell you how much I love them. The knife cuts using a rocking motion rather than the usual back and forth, which makes it much easier. I can actually cut my own food! It is amazing how RSD makes even the smallest things victories when I can do them myself.

This is my reacher/grabber. It is hard for me to reach above my head and sitting in the wheelchair makes me much shorter, so I can't reach a lot of things in the cabinets. This doesn't work as well as I hoped but it does get me most things I need and thus give me more independence.

Typing is hard on my hands and on my bad (and even most mediocre days) I use a speech to text software that one of my good friends bought me. It lets me still participate in things online without making my pain worse. So far, this is my favorite microphone.

This is my travel wheelchair. You'll notice that it can't be self-propelled. Removing those big wheels that can be moved with the arms (which hurt my arms so much anyway) makes this type of chair much lighter, which is good for friends and family who take me places. The difference is from 50ish pounds of a typical wheelchair to 15 pounds for the travel chair.

And this is my Ferrari! Ok, I know, it may just look like an electric wheelchair. But she (yes, my chair is a she and she will have a name soon) is MY chair. She isn't loaned to us and she was fitted to ME! She is top of the line and man, is she fast! For once, I'm going faster than the able members of my family. She is much more comfortable to sit on and for my arms to rest on. She is so easy to drive and holds a charge like no other. This chair gives me so much freedom. I can go where I want without having someone have to push me. I can move without pain. I can go much, much further than I could walking or if someone had to push me (it is hard work pushing a chair with a person in it).

Yes, Francine, my youngest cat decided she needed to help me take pictures of my Ferrari!

CRPS/RSD Awareness Month: What is it Like to Have CRPS?

2010-11-01T20:28:00.000-07:00

November is CRPS/RSD Awareness Month. During November, we try to get the word out about CRPS and help people better understand this disease. Throughout the month I am going to write about all the aspects of CRPS and what it is like to live with CRPS.
I thought the best place to start was the most frequent question people with CRPS hear: What is it like to have RSD? That can be an easy and difficult question all at the same time. No words can really convey what it feels like to live with CRPS. At the same time, I can go on and on about how it has changed my life and what it is like to live with RSD.
The central fact of my life is pain. There isn't a way around it and if I try and ignore it, I make things worse. As I've mentioned before, I have full body CRPS but it is worst in my arms and legs. We aren't sure what started it but we think that my Xolair injections for my asthma caused it to spread.
The pain is like fire constantly burning. The best metaphor I've ever heard is to replace the blood in your veins and replace it with lighter fluid and gasoline then set it on fire and keep adding gas to it. Every touch, every breeze, every movement makes it worse. For me, cold is absolutely unbearable.
I wear loose, oversized clothing so that it isn't constantly touching me. If I don't have to leave the house(which is most days) I stay in my pajamas all day. Now that it is getting colder, I'm having to make decisions between what will hurt the least: getting cold or the weight of my heated blanket on top of my regular comforter. I pick the extra blanket.
Walking became dangerous because my balance was poor in an attempt to not hurt my legs. I chose to go to a wheelchair because the falls caused a flare every time. I try and walk a couple feet every day (I average 6-8 feet) so my body remembers how to walk and I don't lose all of my muscle. I do exercises with my arms and hands for the same reason.
I don't get to go out much because it takes a lot of preparation and building up spoons so that I can enjoy the outing. There are a lot of things I can't do because they might cause a flare. No more concerts or clubs for me. If I go out with friends, one of them has to push me because it is too hard for most people to load my electric wheelchair on the lift on the back of my dad's truck. This will be easier if we get a wheelchair van and if the implant works.
I can't do as much with my dogs as I did before. Practicing agility with Lola is no longer possible for me so my 13 year old cousin does that. On bad days, I can't even pet any of my pets. They have to be careful where they put their feet or lay down because getting stepped on is unbearable. Lola goes to daycare because I can't get her enough exercise on my own. I can't change the cats' litter box myself any more.
My memory and cognition are shot. I sometimes do things twice because I can't remember if I did it, even if it was just seconds ago. I forget words, things I need to do, just about everything you can forget. I have trouble speaking because I can't think of the word I need or I say or type the wrong word. I have alarms to take pills and to remember every little event.
I don't sleep well. Usually, I sleep for an hour then wake up from pain and roll over to the other side. Repeat this all night long. Most nights lately I can't get to sleep until 3am or later. I'm constantly exhausted and take at least one nap a day.
My family has to drive me every where and do my errands for me. They have to deal with the days where my stomach can't handle most foods or my pain is so severe it makes me irritable at the world. They have to adjust to the new me, to me being home all the time and unable to do much to help out.

Happy Halloween!

2010-10-31T17:56:00.000-07:00

Francine as a tiny witch

Lola and I as Alice in Wonderland and the Mad Hatter.

Happy Halloween!

You Don't Look Sick: The Disjoint Between How I Look and How I Feel

2010-10-24T00:07:00.000-07:00

This one phrase is such a double-edged sword. On one hand, coming from someone who is trying to be kind or who hasn't seen me but has heard about my illness, it means that that day I did a good job of not looking like I feel. On the other, the people who are rude (and I got this more with a service dog when still walking) think that I must be lying or faking it. And really, what does sick look like?
CRPS is one of those diseases where there is a huge disjoint between how you feel and how you look. I feel like someone had doused me in gasoline and lit me on fire from the inside. My joints ache, my allergies are out of control, my short term memory is shot, my cognition is awful. Touch and movement make the fire worse. Some days, even a breeze or air conditioning/heat blowing on me makes it worse.
For some people, CRPS causes severe swelling and a huge color change in their affected areas. With me there was some swelling (although it isn't obvious now since it is full body) and minimal color change. For me, the big thing is the skin temperature. Before it developed in my right leg, there was a good 8-10 degree difference in my skin temperature between legs (with the affected leg being lower). But you can't see those things. You can't see the fire inside of me that makes even the smallest things so hard to do. Now, the most obvious sign of my disease is my wheelchair and my handicap placard (and the wheelchiar mini-van my family is considering!!), before it was my service dog and occasionally a sling so people wouldn't touch my arm and it didn't move too much. I look like a normal healthy girl except for my chair.
Another thing with pain is there is a stigma about it. How many times have you heard (sometime idiotic, always obnoxious) phrases like "Pain is weakness leaving the body," "Pain is temporary, quitting is forever" or things like "Just suck it up," "Push through the pain" and "Don't be a wimp"? A lot, right? Pain is something bad or something imaginary, it is a sign of weakness. You shouldn't let it stop you from doing anything.
Heh. Yea right. CRPS pain is very real. The thought that pain is a sign of weakness is laughable. Whoever said that would likely not be able to survive a life with CRPS.
There are many things I can't do. Well, I could do them but it would be incredibly stupid because it would make the pain much, much worse. When I wake up, I'm already behind. Sleep isn't enjoyable for me, waking up every hour or so to roll over because one side hurts too much. I wake up, take my first dose of pain meds, get in my chair, let the girls out of their kennels and take them out to potty. That is already a couple spoons gone. They come back in and I decide whether I can use some spoons ot go get a drink and maybe some food. If not, I get back in bed and get on the computer to check my e-mail and catch up on things. If it is a good day, I eat and drink something while on the computer. Then, on a good day, I may go sew some collars and leashes. On a bad day I stay in bed and play on the computer some more or read a book or work on needle felting what ever animal I am working on then. At lunch, I get up and go either heat up leftovers or make some soup, depending on my stomach. Back to bed or maybe more sewing if I'm still feeling ok. Repeat before lunch routine. Take some time to let the girls out to potty again a couple times in there. Take pain meds at the appropriate times. Dinner time rolls around and my dad calls me to come eat. I collect all of the girls (cat and dog) bowls so I can make their dinner after I eat. Dad makes dinner every night because I physically can't. I eat, then prepare food for my herd and give them their dinner. At this point I am exhausted, even on the days I've spent in bed. And, of course, I look perfectly healthy.

A Most Fantastic Weekend

2010-10-20T23:36:00.000-07:00

Yes, I'm back in my insomniac phase again. The weather is being crazy and alternating between below normal fall and summer which means my CRPS is PISSED. This also means I make a lot of mistakes typing, so if something seems off or a word doesn't make sense, that is why.
So I did have a wonderful weekend. It started on Saturday when I finally got to see one of my best friends in person. Of course, the house was a mess because my dad and I spent the week getting everything done outside of the house before his surgery on Thursday (I'll talk about that later). She got here around 1 and after saying hello, I brought Lola out to meet her two boys (a cocker and a bichon). Of course, Lola was bouncing off the wall and acted like she had no manners. She loved both boys although she was scared they were planning to eat her. yes, my 60 lb pit bull is terrified of little dogs. Totally convinced they will all eat her. Lola gave H and B kisses any where she could reach. I took her back in and brought Dixie out.
I thought Dixie would behave well since she usually does. I put her Halti on because she usually prefers that to having a leash attached to her collar. She did fine until we got outside then she forgot every damn thing she knew. She bucked and bounced and scratched and tried to get her Halti off. She irritated H's bichon so much he growled at her and she felt obliged to growl back. She did better with her cocker, but he is pretty much bomb proof. I think she might have caught on to Lola's nervous energy because at one point she got in my lap and immediately calmed down. The joys of having dogs: no different than kids, they always behave the worst at the times you expect them to do best.
I put my girls up, they put their boys in some of our spare crates and we went to lunch. We went to one of my favorite restaurants, Hams. They have homemade chips to die for. We had a good time talking and laughing the entire time. H gave me a twist cap bottle opener (I can't open them myself anymore) and 2 great braided fleece tugs for the girls. We came back to the house and I gave them the bed I custom made for their pups! Sorry for the poor picture quality, it is from my phone since I haven't uploaded from my camera yet.

It was so nice to finally get to hang out and talk in person. We instant message and text each other every day but there are a couple states in between us so we can't visit that often. I'm hoping that we can stop by their house on our way home from picking up my new service dog in March.
On Sunday I had my event for my collar business Arf Arf Meow. Everything got packed up, we got the wheelchair loaded on the truck and off my aunt and I went to DogFest! It is a festival set up by our local humane society where a bunch of rescues and vendors come out for a day of fun with families and their 4 legged family members. I sold 4 collars, got some custom orders and gave out a ton of business cards. I hope that some of those pan out. Surprisingly, this is one of the times where my disability does not stand out as much and I get very few questions unless I volunteer information. I do end up talking to people about my disease and service dogs but it is all my choice. I also got to browse the vendors and got 2 shirts for myself (1 long sleeved light pink shirt that has a cartoon pit bull that says "My Best Friend is a Pit Bull" and a short sleeve light red one that says "Who Rescued Who?" and has paw prints on it) and some cute fancy Christmas collars (the ones that have all the fabric strips hanging off with little things like snowflakes or reindeer attached to the ends) that are called Crazy Collars for our Christmas card picture this year. We shared a tent with Camp Bow Wow and I got to hang out with two of the awesome people there. We had a great time, like I always do when I hang out with CBW people at events. E brought her gorgeous Standard Poodle so I got my poodle fix while I was there as well.
Of course, after this kind of energy intense event I'm exhausted and my RSD gets irritated. I spend at least two days in bed recovering. It is just something I know will happen and I plan for it accordingly. I usually don't do too much before the event besides sew.
That is one of the big things with CRPS: balancing your spoons (if you don't understand what I mean by spoons, stop and go read The Spoon Theory since I talk about spoons a lot). I don't have unlimited spoons so I have to budget them so I get to do what I want to do. Sometimes things happen like me not sleeping and that drastically reduces how many I have. I take everything in to account, even small things like letting the girls out to potty, taking a shower and getting food for meals.
My dad had throat surgery on Thursday to try and help his severe sleep apnea. The surgery went extremely well and he got to come home earlier than expected. He is in some pain and isn't allowed to talk so that has been interesting. When you get both of us together on prescription narcotics even when he can't talk it is a riot. I have his sense of humor so it doesn't take much to get us going.

The Weather

2010-10-15T09:14:00.000-07:00

The weather and I are generally at odds. My CRPS is very affected by the weather so there is a very narrow temperature range where I am happy. If it gets below 75-80 I start getting too cold, which makes my RSD angry. Humidity is another thing my RSD doesn't like.
This summer was a blessing and a curse. It wasn't as humid for most of it, but we started getting 90* weather in May and didn't stop until the end of September. Then we went from 90s to low 70s/high 60s overnight. The shock to my system was huge. It set off a flare faster than even I was prepared for. It takes a week or so for my body to adjust to the lower temperature. Of course, this being North Carolina, the temps jumped back to the 80s the last week and last night went back down to the low 60s. That makes for a night of poor sleep.
The other problem with weather is clothing. The summer is nice because of the small amount of clothing and the loose, flowy dresses and things. Of course, then I have to deal with blasting air conditioning which can cause a flare if I'm in it too long or under a vent.
In the fall and winter the clothes challenge comes. It hurts to have fabric against my body. But it hurts more (for me) to be cold. So my mom and I spend hours in TJ Maxx trying on shirts and pants trying to find one or two things that work. Right now I have 2 shirts, a sweater, a pair of black pants and (drumroll please!) 2 pairs of JEANS! My beloved jeans. Seriously, when I had to give up my jeans because they were too tight I was heartbroken. But we were finally able to find 2 pairs that didn't hurt me but also didn't look like I was wearing way to big jeans.
Yes, even thought I'm sick, I still care about my fashion. My mom has been in the fashion industry my entire life and traveled to NYC all the time. She brought back pictures, magazines and stories of what they were wearing up there. I loved it and have never dressed to the trends here in NC. Having CRPS doesn't change that, it just makes it more challenging
In other news, this is a big weekend for me. I finally get to meet one of my best friends in person! We were on a forum together and got ot know each other, then found each other on Facebook. We IM pretty much every day and joke that we must be long lost sisters because of our similarities. I also get to meet her 2 dogs who I have heard so much about! And I get to give them their brand new custom made (by me!) bed!
On Sunday I have an event for my collar and leash company Arf Arf Meow. We are a vendor at our local humane society's DogFest! I will be there with Camp Bow Wow (where I sell my collars) and I am so excited. I will have pictures and an update on everything after this weekend.

The First Outing: Assistance Dog Blog Carnival

2010-10-09T19:44:00.000-07:00

I'm participating in the Assistance Dog Blog Carnival started by Sharon at After Gadget. If you want to join, anyone from assistance dog handlers to puppy raisers to people without assistance dogs can participate. Your posts just have to relate to assistance dogs. The carnival is being held quarterly and is being hosted by different blogs each time.
I have a chronic neurological condition called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). It causes severe pain in any affected limb as well as swelling, color change, memory and cognition problems as well as a whole host of other things. I have fully body CRPS which is fairly rare. My RSD has also caused a seizure like reaction to pain in my body.
Why a service dog? Why did I choose the service dog lifestyle?
I had always known about service dogs. You can't love animals, especially dogs, as much as I always have and be as involved in them as I have without knowing. I read books about them, read articles about puppy raisers, taped any program regarding them (or any other dog thing). I even thought I might one day be a puppy raiser.
I never thought I'd need one. Even after I got sick, I didn't think I'd need one. Dixie is actually the one who convinced me that a service dog is something I should look in to further. She started alerting to my seizure like attacks before I knew they were coming. I didn't know that was she was doing at first. I don't remember what made it all click for me (thanks to my CRPS, this is a common thing. My short term memory is terrible now) but it did.
I did a ton of research on the laws, the service dog lifestyle, if Dixie could make it as a service dog. I talked to my trainer where I used to live a lot. I started brushing up on Dixie's already excellent manners. I started focusing her alert from getting in my face and licking me to nudging my knee with her nose. I bought her a backpack (since I was able to carry less and less in a purse) and started to make her a cape to cover it.
Finally, I decided we were ready to stat public access training (in my state, service dogs in training have the same rights as full service dogs).
I thought I'd talk about Dixie and I's first outing as a team. The fact that I still remember this in such detail as bad as my memory has become tells you how significant it was. It was the first day in a new lifestyle and the first day of a new freedom I hadn't known since I got sick.
My aunt had helped me make a cover for Dixie's backpack and asked if I wanted to take her our for her first day as a service dog. I was nervous but said yes. Dix had the training and the temperament and I knew we had to take the first step sometime.
We decided to start with Home Depot, where my aunt had to pick up the hammock she had ordered. We loaded up in the car and off we went. We got there, Dixie in her gear, and headed in. I expected someone to at least ask about Dixie but we walked in, went to the service desk, got my aunt's hammock and left. We got one comment: "Wow, I didn't even know she was there!"
Since that went so well, we decided to go ahead and go to Target to pick up things both of us needed. Again we walked in, no problems. I heard one employee tell another that Dixie was a service dog and they are allowed in the store. As we walked through the store, Dixie stayed in a perfect heel right by my side and ignored everyone around her! A couple people asked about Dixie, what she did, etc and I was happy to tell them. I got comments on how well Dixie behaved. Many people didn't even realize she was there! She was in her element and acted like she had been doing this her entire life.
Since things had been so great, we decided to grab a bite to eat as the humans were all hungry. We went to Chilis, told them she was a service dog and were seated. Dixie went right under the booth and laid down for a nap. When the waiter brought us our drinks, he also brought Dixie a bowl of water, which she only took a few sips of. She was more interested in napping until I needed her. I'm sure there was food under the booth and I definitely dropped some but she didn't even blink. We finished out meal and headed home.
My aunt was super impressed with her, even though she knew how hard we had worked. I was on cloud nine. Dixie did as well as a service dog who had been working for years. That was the first of many days Dixie worked and it was a confirmation that I had made the right choice for us.
Dixie excelled at service work. As my disability progressed, she learned new tasks and rose to every challenge I threw at her. I learned that I loved the freedom a service dog could give me. My family loved the reassurance that I was safe when I wasn't with them.

Why a Service Dog?

2010-10-03T21:39:00.000-07:00

This is a big question. Why a service dog? Why did I choose the service dog lifestyle?
I had always known about service dogs. You can't love animals, especially dogs, as much as I always have and be as involved in them as I have without knowing. I read books about them, read articles about puppy raisers, taped any program regarding them (or any other dog thing). I even thought I might one day be a puppy raiser.
I never thought I'd need one. Even after I got sick, I didn't think I'd need one. Dixie is actually the one who convinced me that a service dog is something I should look in to further. She started alerting to my seizure like attacks before I knew they were coming. I didn't know that was she was doing at first. I don't remember what made it all click for me (thanks to my CRPS, this is a common thing. My short term memory is terrible now) but it did.
I did a ton of research on the laws, the service dog lifestyle, if Dixie could make it as a service dog. I talked to my trainer where I used to live a lot. I started brushing up on Dixie's already excellent manners. I started focusing her alert from getting in my face and licking me to nudging my knee with her nose. I bought her a backpack (since I was able to carry less and less in a purse) and started to make her a cape to cover it.
Finally, I decided we were ready to stat public access training (in my state, service dogs in training have the same rights as full service dogs). It's funny, I still remember her first public access day in detail. My aunt and cousin took us out with them to Home Depot, where they checked in on a hammock they had ordered. No one questioned us and Dixie acted like she had been doing it her whole life! Then we went to Target to pick up a few things. Dixie stayed in a perfect heel, ignored everyone and I don't know that most people even knew she was there. Finally, since things had gone so well and she wasn't showing and signs of stress or being tired we went to Chili's to eat. They brought her a bowl of water (which now I generally don't allow because I have my own portable bowl and water in the car or outside) after she had gone under the table and laid down. She took a few sips then took a nap while we ate. I'm sure there was some food under the booths and I know I dropped some but she ignored it. I was so proud I could bust that night!
Dixie excelled at being a service dog. As my disability changed, she learned new tasks and rose to every challenge I threw at her. I learned I loved the freedom a service dog could give me. My family loved the reassurance that I was safe when I wasn't with them. This isn't to say there aren't challenges because there are. We have had gate keepers and business owners try to deny us access before. I have had people yell at me about Dixie's looks (apparently they made her vicious?), we have nearly been attacked by a "service dog" at the Mayo Clinic. I spend a lot of time educating people on service dogs and CRPS. But I love it! This was not an area very familiar with service dogs and I like to think that I, along with my fellow local SD handlers, are changing that.
When Dixie had to retire unexpectedly, I was devastated. I'm sure I looked and sounded put together but my heart was broken. I thought Dix and I would be a team for another 5 or 6 YEARS at least! But her knee failed her and she told me with her actions that she was done working, and since my service dog always comes before myself, she retired. She does still help while I'm at home and the rest and lessening of work and walking has done wonders for her knee (along with some physical therapy and joint supplements).
I knew after Dix that I wanted to get another service dog. I enjoyed the freedom and confidence I got from having a service dog. I also knew there were many tasks that people have to do for me now that the dog could do instead. I also knew that since my disability was progressing at such a rapid rate, I wasn't up to owner training again (I shudder to think of raising a puppy right now). Instead I decided to go the program route. I did a lot of research through Assistance Dogs International and Delta Society to find my program. I wanted one who would train for mobility and medical response (and training for multiple disabilities is rare) and needed one who wouldn't penalize me for having pets. My pets are well trained and friendly (even my cats, but that is another post) and Dixie didn't pick up any bad habits from Lola, who we raised from a young puppy after she was dumped.
The first requirement gave me a short list. I actually contacted places who didn't do one or the other. The second shortened that list even more. After talking with my family, e-mailing with the finalist programs, I chose CARES Inc. They had everything I needed (as long as my vet was one of the references and could say that our animals were well cared for and trained) so I applied. I sent in medical records, a letter from my doctor (basically a prescription for a service dog saying why I needed one), 2 letters of reference (my vet and former boss/mentor and my best friend from college who has been with me through everything) and their application completed.
I was accepted and now am waiting until March to go get my Poodle boy! It was pretty amazing how things worked out. They had quite a few poodles donated in the past few years but not the demand so when we decided that was the right breed for me, I didn't have to wait the usual 18 months-2 years!
Earlier I said I wasn't expecting to ever need a service dog. Well, neither were my parents. No parent is ready for their child to get seriously ill and become even temporarily disabled. My parents weren't any more ready. My mom wasn't ready to admit that I could be disabled. Dixie's training was hard for her because a)it meant admitting that I was disabled and probably wouldn't get better any time soon and b)she had never seen Dixie in action. She was constantly worried about us getting harassed or kicked out of places despite the laws. She didn't want Dixie to come many places at first. Then she saw Dixie in action. My normally hour long attack lasted 5 minutes thanks to Dix. She changed her mind. She could finally have peace of mind when she wasn't with me. She knew that we finally had a way to combat these terrifying attacks. One day we had a serious access challenge and she was spouting the law and asking to see a manager like a pro. I was so proud and happy I could have burst. I was nearly in tears watching my mom defend my right to access with my service dog.
I didn't put that last part in to make my family seem like bad people. They aren't. They are pretty awesome. I put it in because so many families go through that. I can't tell you how many service dog handlers have stories similar to mine. Family and friends can be scared, unsure, afraid, or even embarrassed to be seen out with their service dog team friend/family member. I think that one thing the service dog community is missing is support and information for those close to a service dog team. Perhaps if there was more, there would be fewer stories like this.

Why I Love My Doctor and TV

2010-09-28T22:21:00.000-07:00

For most people, declaring that you love your doctor is either done flippantly or is just weird. For someone with CRPS, if you have a great doctor, you really do love them. I love Dr. H. My entire family and probably my friends love him too.
Today I had an appointment with him. Nothing big, just a prescription refill appointment. I had a great nurse who knew how to take blood pressure in my lower leg. The machines always get a ridiculously high number and there are not many people, especially younger people, who can take blood pressure on a lower leg. If any nurses read this, learn to do it. Please. I should have mentioned that we arrived 30 minutes early because we thought my appointment was at 11 instead of 11:15 but they still had us waiting in the waiting room less than 10 minutes.
We didn't go to the regular exam rooms since he doesn't need to do any exam on me at this point. He refilled my pain meds and gave me another new medication to help with one of the side effects of all pain meds.
My trial implant surgery is scheduled for November 15 so we discussed the surgery a bit more. I will go the week before (since my surgery is on a Monday) to see him one last time before he does the surgery then also so see the anesthesiologist. Apparently there is quite a bit of pre-surgery hoops to jump through. They want to see me, speak to me and make sure I am mentally and physically ok for the surgery.
For the trial they will put me under as well as give me a sedative. They will implant the leads, get everything connected then reverse the anesthesia so I can tell them how it is working and if anything needs to be adjusted.
This is an outpatient surgery so I will go home, probably sleep off the sedative then spend the rest of the week doing what I would normally do (with some restrictions on bending, lifting, etc). Oh and no shower for that week because I will have an open wound essentially in my back where the leads come out and attach to the charge.
After that week they will remove the leads and I will again go about my normal life. This is to ensure that the pain relief (if there is any) was from the spinal cord stimulator. I have to have at least 50% pain relief for them to proceed and get the permanent one.
Today was also the day my current favorite TV show came on. Yes, I am a Gleek. I love this show. My best friend actually got me in to it and now we "watch" it together. Which really means we both watch it (tonight I learned we have a 30 second head start on her) and IM back and forth. I will say that Glee just isn't the same when we can't do this. The first half I didn't have a computer and the instant messenger on my phone wasn't working. It just wasn't as much fun.
Another show I love, which I actually stay up for, is on MTV if you can believe that. It is called If You Really Knew Me and is quite possibly the best show MTV has on right now. It is about a program called Challenge Day which challenges all of the cliques and stereotypes. I want to be a part of this program so bad. I think what they are doing could change the world. It is rare that I get this excited about a human project but this is just amazing. I highly recommend you check it out.
And now I'm watching Inside the Actor's studio. I love this show. I've seen quite a few of them and the host is probably the best host on TV right now. I have yet to not learn something about the actor, director, writer, creator or musician. It is hysterical, it is touching, it is educational. Right now the Betty White episode is on and it is wonderful. If you see it on (or any of them for that matter), stop and watch. You won't regret it.

Sleep

2010-09-23T18:54:00.000-07:00

I've always loved sleep. When I was in college, I tried to squeeze in as many naps as I could while still doing well in my classes. A comfortable bed and good comforter are extremely important to me. My down alternative pillows travel with me anywhere I go.
Sleep with CRPS is a whole different matter. Remember, the slightest touch hurts so the sheets and comforters, even as soft as you can get, still hurt. Going without means you can get chilly and that will cause the pain to get worse, since CRPs, for most, is very cold intolerant. This also means that wearing long pj pants and shirts is hard. I wear men's extra large shirts and pj pants to make it as painless as possible. Tight clothing of any sort is a thing of the past.
CRPS can also cause excessive sweating. I have this problem and often find myself freezing but drenched in sweat. It sucks to wake up at night and find your clothes soaked in places. But again, getting cold is, for me, even worse.
I've always been a side sleeper. I can't sleep on my back or stomach and it isn't for lack of trying. I've gotten foam wedges to try and force me to sleep on my back but I either don't sleep or when I do fall asleep from sheer exhaustion I wake up on my side.
Since my CRPS has spread to both sides (1 calf and foot short of full body), sleep has been a nightmare. I don't sleep for more than 2 hours without being woken up because it is painful to be sleeping on whichever side I was on. I roll over, go back to sleep for another 2 hours then wake up again to roll over again. Every night is like this. I wake up and don't feel rested at all.
I've tried taking medications and occasionally do. The problem is that I then am so exhausted I sleep up to 15 hours. When you sleep that long and take the meds, you wake up so groggy that it isn't any better than the regular sleep I get.
It is pretty crazy when you think of all the areas that CRPS affects. Most people focus so much on the pain that they don't notice everything else it can mess up.

Something I Thought I Wouldn't Face Again

2010-09-21T21:01:00.000-07:00

I've been having headaches that start in the afternoon and get worse through the day. They occur nearly every day so I went to my eye doctor thinking I needed a new prescription and the wrong glasses were causing the headaches. He took a picture of my inner eye and found that there was some extra pressure on my optic nerve. He referred me to a neurologist to further figure things out.
We got an appointment for last Monday and were hopeful the doctor would be able to help me. I was (obviously) in my wheelchair and having a normal pain day (around a 7). We went in, gave the nurse my history, told her what was going on and she left to get the doctor.
Things started well enough. I told her what was going on, then she went through my medical history again. Of course, I mention my CRPS/RSD. As soon as the words left my mouth, there was a visible change in her demeanor. She started bombarding me with questions about why I was in a wheelchair, after I inadvertently mentioned that my records were with the lawyer to apply for disability she questioned me, how it had spread, where it had spread, etc. Her tone was one of obvious superiority and disbelief. She said her mother had CRPS in her arm but it was "cured" by an injection.
At that point I stopped her and asked if she believed CRPS existed. She first said that it was controversial and then that she didn't believe that CRPS could spread and that she had never seen a paper about it. I told her that was very odd since my doctor and my pain psych both have tons of papers about it. Then she said that an anesthesiologist/pain management doctor should not be diagnosing CRPS (even though all of the leading CRPS organizations say the opposite, that they are the best to be diagnosing). She spent more time telling me that I was essentially a liar and that I was faking the spread of my disease. She knew nothing about me. She didn't know that I had everything before I got sick. She didn't know that there was no reason for me to "fake" this illness to get away from life.
I thought after I found Dr. H I would never have to face this again. I've had doctors tell me it was all in my head, that there was nothing wrong with me, a physical therapist who said CRPS didn't spread. But I found him and then Dr. F, my psych and thought I was done with that. My other regular doctors never questioned me. To say I was taken off guard when this happened is an understatement. I was floored. I was there for a totally unrelated problem and after that attack I totally shut down. I stared at the wall, answered the questions in a monotone and just waited for things to end. In the last 5 minutes, the doctor finally got around to my headaches and told me she wanted to do a spinal tap, an mri and a medication. I told her that I didn't trust her to do a spinal tap on me since she didn't believe me about one medical condition, I had no clue if she thought I was faking others (asthma, allergies, eczema, etc).
While this was a bad experience, it reminded me that there will always be people who don't believe in CRPS or that it spreads. There will always be people who think I'm faking. But I also have a big, strong support network. When we walked out of that room, my dad was livid. He told the nurse, he told the receptionist and tried to find someone in charge to report the incident to. I have friends who listened to me and shared my anger about what happened.

The Double Standard

2010-09-12T14:43:00.000-07:00

I've noticed something in the expectations for the healthy versus the chronically ill. A healthy person is expected to have ups and downs, to have bad days, to get angry, to be unhappy about something, basically to be a human.
But when someone is chronically ill, especially if they are disabled by that illness, they are expected to be super humans. They can only be brave and happy despite what is happening to them. If they have a bad day, they get angry or upset, people are appalled and get angry at them.
This is even more so for people in pain chronically. Being in pain wears on even the most saintly person. Jumping on a person in chronic pain on their bad days does nothing productive. Before you get angry, stop and think about whether you have had a day like that.
I've had problems with some of the people closest to me not understanding or being in denial about my condition. I reached the point where I let very few emotions show because I was so fearful of the response. Thankfully, I have an amazing group of friends who understand that I'm just like any person and that I have ups and downs.

Probably the Best Birthday Present Ever

2010-09-09T14:56:00.000-07:00

My birthday is March 17th. This year, it seems very likely I will be traveling sometime around then.
Why?
Because my class to pick up my service dog is scheduled for March! I heard on Tuesday and am so excited.
I will go to Kansas for a week of training with my new service dog so I can learn his commands and we can make totally sure we are a good match. At the end of the week, they will hold a graduation ceremony and ownership will be transferred to me. I hope to meet m dog's breeder since he was donated as a puppy.

I am also going to be doing a fundraiser for CARES soon. I hope to be able to raise enough to sponsor a service dog for someone else

The End is Finally in Sight

2010-08-30T17:43:00.000-07:00

Today my wonderful psychologist (who is an expert in CRPS) cleared me for my spinal cord stimulator surgery! We just need the insurance stuff to get worked out and I will get the call to schedule the surgery!
It has been 18.5 months since I got sick. I haven't driven a car in just about that long. I haven't been able to do something spontaneous since I got sick. I haven't used my left arm for much in that long. Even though I will likely still need my wheelchair sometimes and will always have CRPS, this will be a huge improvement.
I am so excited and the wait is going to be awful. But finally there is a light at the end of this tunnel.

I Get By With A Little Help From My Friends

2010-08-29T22:47:00.000-07:00

Yes, I'm a Beatles fan. Blame it on my dad. Most children listen to Mozart in womb, I listened to Tom Petty, the Beatles and other rock bands.
My friends are one of the reasons I'm able to live with CRPS. I know it must be a challenge to adapt to a friend getting sick and becoming disabled when they were previously healthy. I have quite a few friends who I stopped hearing from when I had to move home and couldn't do all of the fun things I once could.
I can't talk on the phone very well because CRPS and my meds leave me with serious trouble finding the words I need. I can't be touched because it hurts so much. That also means I can't go to any bars or clubs or parties since the risk of being bumped is too high (not to mention I can't drink any alcohol because it shouldn't mix with methadone and I don't want to over work my liver any more than I already am with my current meds). I have to be pushed in a wheelchair because right now we don't have a wheelchair accessible vehicle and the carrier we have isn't easy to get the electric chair on and strapped down It isn't fun to have to haul your friend around. Since I can't use my arms, I don't use a chair I could propel myself in. Taking trips is hard because we don't know that every place will be handicap accessible. We don't know if my wheelchair will fit where I need to go, I always have to make sure I bring my bath chair. Impromptu is not a word in my vocabulary any more. I'm usually accompanied by a dog and a lot of stares. I'm often stopped and asked about myself and my service dog, when I have one.
Not to mention how scary it is to see someone your age going from totally healthy to disabled by a neurological disease that doesn't have a cure. Nobody ever thinks that this could happen to them. You watch Extreme Home Makeover and see these tragic stories but never think that could be you. I'm the very obvious, tangible reminder that it can happen to anyone. Their life can change in a day too. It's not a fun thing to think about and most people want to avoid it.
The friends who have stuck it out are amazing. I don't see most of them very often. Two of my very best friends live far enough away that it is a trip to visit. One of those people I've never met in person. I talk to them almost every day through instant messenger. They listen to me venting, crying, they support me through my ups and downs, they get excited for my good news, they are always there for me. Without them and my other friends, I can't imagine what my life would be like.

So What Now?

2010-08-20T21:32:00.000-07:00

I didn't mention in my last post that the CRPS had spread all the way through my left leg and foot. That makes walking excruciatingly painful, so I'm wheelchair bound. I do make sure to get up and walk a few steps at least every day so I don't lose my muscle and function.
The doctors I saw all tried different medications on me. I ran the gamut of pain meds, anti-depressants (those can have a pain relieving effect), new medications, antibiotics and discovered I have quite a few medication allergies along the way.

I tried physical therapy with different doctors at different facilities. My first physical therapist, who was wonderful, knowledgeable and up to date ended up discharging me because the PT was making me worse rather than better. The second time I tried, I had a very old school therapist who told me that CRPS didn't spread (despite my body showing the opposite) and who forced me to endure painful exercises that often left me in tears and set off pseudo-seizures. We got referred away from the doctor who sent me to her and never went back. My current doctor at Duke agrees that PT was not a good option for me.
So after all that, my doctor, Dr. H, agreed that more drastic measures were necessary. He feels that the best option for me is a Spinal Cord Stimulator. Electrodes are implanted along the spine and small "jolts" are delivered to block the pain signals from reaching the brain. So instead of the terrible, burning pain I feel now, I would feel a tingle. They do a trial where only the electrodes are implanted internally and the main charge point is left outside the body with a small incision open to allow the lines in to the electrodes. If there is a 50% or greater pain relief, after a 2 week waiting period to insure the pain relief was form the SCS, they will do the permanent implant surgery.
I'll talk more about my path to the SCS later.

The final part of my treatment is a bit unique. I was partnered with a service dog. My first dog, Dixie, is what they call a natural alerter and was able to detect the pseudo-seizures and pain flares before I knew they were coming on. We work to target those alerts into one, less obtrusive behavior and then worked on public access training. Her previous training (I had her for 2 years before I got sick) helped speed the process along tremendously. She learned more tasks to help me and was the best partner I could have asked for. She gave me a freedom and confidence I hadn't had since everything started. Unfortunately, she had to be retired due to a medical condition in May. I'm now waiting to be partnered with a Standard Poodle service dog from CARES Inc in Concordia Kansas. He (yes, we do know that the 2 dogs who are a good match are both males) will help pick things up for me, open doors, help counter-balance me if I start to get wobbly getting into my chair and get help if I need it among other things. Once I get the call that he is ready, I will go out to Kansas for training with him.

Who is the CRPS Girl?

2010-08-17T20:18:00.000-07:00

My name is Ashley, I'm 23 and I'm the CRPS girl. I have Complex Regional Pain Syndrome, a severe pain disease. CRPS is a neurological disorder where my brain interprets non-painful stimuli as extremely painful. So a breeze or a light touch is excruciatingly painful. It also causes swelling of the affected areas, color change, temperature change and temperature intolerance. My immune system has been affected so I get sick much easier and my asthma, allergies and asthma are worse.
It all started in February 2009 for me. I woke up one Monday with swelling and extreme pain in my left underarm that no one could figure out. For the next 12 months the doctors were stumped and the pain and swelling spread down my arm, across my chest, in to my right arm to a lesser degree and down my trunk. We travelled all over the state and went to 2 others in search of a diagnosis without success.
In February I started seeing a new doctor at Duke that said he knew he could help me. A successful stellate ganglion block (where they inject anesthesia into one of the nerve bundles in my neck) confirmed his diagnosis of Complex Regional Pain Syndrome.
I also have what my doctors have term pseudo-seizures. My body reacts to pain spikes with seizure like symptoms that are managed with medication. I also, until recently had a service dog (that cute spotted dog in the picture) who was able to alert to both the pain spikes and pseudo-seizures.

But there is way more to me than just the disease. I'm an animal lover, dog behaviorist hopeful, nerd, avid reader, pit bull advocate and much more! I have a Catahoula Leopard Dog named Dixie who is my retired service dog, an American Pit Bull Terrier named Lola who is well on her way to being a dog sports star, a Norwegian Forest Cat mix named Karma who is a total brat to everyone but me, a long haired kitten named Francine that someone left in a box in our driveway and a corgi/chihuahua mix named Indie that my mom and I have "joint custody" of since he like her dogs better than mine (but since we all live in the same house, it doesn't mean too much). I'm waiting on a Standard Poodle Service Dog.
I wanted to be a veterinarian before I got sick but the work and the schooling (I was 1 semester away from going to vet school) would be too much on my body. So now I am working towards becoming a dog behaviorist and trainer. I would like to work with local shelters to help more dog be deemed adoptable and help more people work with their dogs rather than surrendering them to shelters. I would also like to train service dogs for other disabled individuals.