RSD Interview #47 - With Christine Beausoleil

HOW AND WHEN DID YOU GET RSD?

I was injured at work on April 29, 1999 when I struck my right knee on a counter support (hard). The whole unit heard it. After three days of no improvement, I requested medical attention. X-rays were done and they found a tumor encapsulated in the fibular head (an incidental finding, having nothing to do with the injury, I didn’t have any symptoms from the tumor).

On March 5^th, 2002, I was re-injured at work, this time taking my chance of working away from me. There have been multiple surgeries and I also broke my knee, simply by standing on it. Ultimately, I received a letter from my employer, firing me for not being able to perform my duties!! What a slap in the face! It was totally legal, as Florida is a "work at will" state, and you can be fired for absolutely nothing.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

My passion, other than my girls, was to be a nurse-from the time I could talk. I can no longer work as a nurse, or anything, because of the symptoms of the disease and the side effects of the medications that I need to take. Friends don’t understand. Most have drifted away, leaving me alone and out of the loop. Now I only go out for medical appointments, testing, etc. I’ve missed weddings, funerals, family gatherings, etc., due to flares, no wheelchair access, and hospitalizations.

Because I can’t work, my income has been lowered significantly, affecting how I pay bills, take care of my girls' gifts for Christmas and birthdays, college, etc. My Mom moved into my basement to be my daytime caregiver, as well as taking care of my girls (mostly, driving us everywhere).

DO YOU HAVE A GOOD SUPPORT SYSTEM?

My Mom and girls have been great. The girls were only four and six when I was first injured. The “me” now is the only one my youngest remembers. Kaitlyn, at the age of four, packed her toys and stuffed animals, took her pillow and stood by my front door, waiting for someone to come get her because I “wasn’t fun anymore”! She hates this story...now, it’s funny; then, not so much. Kaitlyn and Meaghan, both, stayed home instead of going away to college, so they could “take care” of me. I’ve had a hard time with Paul. He has been very immature and selfish during this time. It’s taken many arguments and counseling to have him realize what he’s done to the family. Things with him are coming around.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Until two years ago, I was going to Mass weekly. It became almost impossible to get me out of the house in the wheelchair (and back in), as well as causing increased pain by doing so. Even with the ramp we put in, I don’t go out unless it’s medical. Locally, Mass is on TV six days a week and, if I’m awake, I’m watching it.

Sleeping problems make everything difficult. I tend to be awake all night long, and sleep during the day. During the week, the girls are in school, so I don’t feel guilty about sleeping.
My Mom tries taking me out after my appointments (doing anything from eating to shopping), usually without much luck. I just don’t have it in me - too tired or in pain. She pushes, sometimes giving me no choice; telling me her sugar is too low and she needs to eat ASAP, she has to pick up something at a store, pay a bill, you name it. She’s good!

HOW HAVE YOU REINVENTED YOURSELF?

Up until a couple of years ago, I would crochet & do crafts for people. My hands became a problem, but I was able to teach the girls some of my stuff and how I cook (usually, with no recipes). My youngest really took to cooking. It’s very calming.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

I was able to be at home with my girls after school instead of them having to go to daycare. It was nice to be there to help with homework and cook good/healthy meals for them. Our house became “the house” to go to for sleep-overs and such, especially, after we put the pool in. I figured it would help out with my physical therapy. I loved teaching the girls to swim, too. I learned fairly early. I wanted them to be confident around the water.

WHAT THINGS DO YOU MISS THE MOST?

I miss working, as sad as that is. I’d wanted to be a nurse from the time I was about five. I had to put myself through school because my parents didn’t have the money to do so. I’ve worked in hospitals, doctors’ offices, and even a county jail (which was pretty cool). I considered teaching to be a big part of nursing. If the patient understood why they were sick or had to be on a certain type of diet, they could stay healthier and would need less visits/calls to the office or hospital. In one office, I would do group teaching about different conditions that patients and families could attend. Some of the battles patients have are with family telling them “you can eat this!”, “just one drink won’t hurt you”, etc. Sometimes helping one person directly helps a whole family indirectly.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

RSD can’t be “caught". The rashes, discolorations, etc., won’t rub off on you. You may not see the areas that are painful, so PLEASE ask before touching us!! My Mom still rubs against me, either with her body or clothing (she has just recently grabbed my arm). Family and friends have to understand that we don’t want to cancel plans, but sometimes our bodies just can’t deal with being up and out. Between the conditions, meds, and treatments, our body can only deal with so much. Don’t take it personally. Something I've said from day one. I've never asked "why me?". I always said better me, a nurse, to have this than someone who can get lost in the system (doctors, testing, meds, therapy, etc). I knew where to start, who to see, which drugs to ask to try. Others may not, and may even believe the crap of "there's nothing wrong, it's all in your head". My personality is one that I push the docs and don't just sit by and wait. If the doc isn't up to par, he's gone.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

Most of us with RSD/CRPS also have other conditions as well, like Fibromyalgia, Arthritis, Osteoporosis. As much as we would like to go out shopping, to lunch, etc., we just can’t. The medical problems and meds can cause stomach problems, so being out can cause unforeseen problems.
If you want to “do something”, cook something we can reheat when we aren’t feeling well, or offer to do our food shopping, maybe even vacuum. Doing things that take a lot out of us would help us the most.
If you want to really know how we feel, ask, and listen (really listen) to what we say. Nothing can be worse than those who tell me that I have NO idea what pain is, yet, because I’m too young! If you see someone who doesn’t look “disabled” because they can stand or are young, don’t judge right away. You may see us literally dragging ourselves back to the car five minutes later. Remember that not all cancer patients are bald, not everyone in pain is crying out.
I have used smiling, laughing, just “happiness”, as a coping mechanism when I’m out and not feeling well. My family is surely tired of hearing that I’m not feeling well. The “act” gives them hope that I’ll have more good days than I currently have. Mom doesn’t even know when I’m doing it. The happiness sometimes helps improve my mood and makes me truly feel better. It’s always good to try before going anywhere. It can get me through things I’m dreading, like doctor appointments or testing.

Meditation can help with this, too. I’ve used that for years but, when flares start, it’s better to try to sleep through as much as possible.