The day starts off pleasantly; no rain but a nice crisp in the air. Dinner plans are set for my uncle’s family to drive from Arlington to our neighborhood Chili’s. This is the first time all of us will be together since my cousin Tim got married, so it will be a mini-family reunion of sorts. Mom is coming with me to meet Elizabeth and today I am also seeing Jeff, who is a chiropractor. Mom is hoping that it will snow during the holidays; although she is in her late 60’s, she has never SEEN it snow.
Mom is anxious to meet Elizabeth, not only as my Mom but as a woman who suffers terribly from PsA (Psoriatic Arthritis) and has changed doctors after losing trust and faith with previous doctors who blamed her for her deteriorating back. I am anxious too because I want Mom to like Elizabeth as much as I do.
Once we arrive, Mom sits in the waiting room while I first see Jeff. Jeff is most likely in his early thirties, good-looking and very athletic. His assistant Jodi is very nice but a bit quiet compared to Jeff’s big personality. Jeff tells me he has read Elizabeth’s clinical notes and needs to know what my pain level is today. I tell him I’m about a “6” and that the pain in my left foot and ankle ranges from sharp, aching, burning, throbbing and tight. A couple of days ago a friend stepped on my foot and even with the Aircast on, the pain was intense immediately and I am still “recovering” from it.
Jeff is not surprised that my pain is a constant 24/7 and is getting worse. The simple act of walking continues to exacerbate the symptoms and so throughout the day I continue to stop my activity to rest and elevate at least my left leg. Jeff asks me if I have ever belonged to a gym and, if so, what kind of exercises did I enjoy doing. I tell him that I enjoyed rowing the most, which surprises him a lot because it takes a lot of strength to row. I told him sometimes I would row for up to one hour. I also liked the elliptical and occasionally I would walk on a treadmill or cycle, although whenever I cycled, my butt and my feet would always fall asleep. I can tell that he is surprised by this and tell him that my hope is to soon be in a pool and try to swim. He thinks this is an excellent idea since swimming is the best form of exercise for many RSD patients.
Jeff asks me to lie down and he tells me that one of his main concerns is that I maintain my muscle mass, particularly in my legs. Although I am far from petite, he acknowledges that I have a great deal of muscle mass throughout my body and if I lose that, my symptoms will only get worse and doing even the simple tasks will become exhausting. In additional to my abnormal gait, which has been abnormal since the accident, my pelvis is misaligned. As Jeff moves my legs one at a time in the air and feels my pelvis, he tells me that I have a decreased range of motion in my pelvis, the tone of my pelvic muscles are abnormal and the entire area is tender. My leg muscles are already losing their tone and my hip is elevated on the right side. As if it isn’t bad enough that I can only wear one shoe, now I need to make sure that I wear one that is of similar height as the Aircast, otherwise my pelvis and hips will continue to go out of alignment. Jeff tells me he needs to put my pelvis and hip back into alignment and I agree although I have no idea what that means. He talks me through it as he asks me to lay this way and that way and cross my arms. Once he is done, I notice some hip pain relief on my right side immediately and when he checks the length of my legs against each other, he tells me that my hips are now aligned. He gives me a hand to sit up and then tells me about the Type IV Laser Therapy. It is literally what you think; it is a laser that, when placed at areas of suspected RSD “affected” areas, the tool will emit a loud static-like noise. He says that it is a good tool to tell doctors were these RSD “affected” areas are and by using laser therapy on them, it can provide some relief to the patients. For some, it is temporary relief; for others it can provide dramatic improvements. Since this is a non-invasive option, I am eager to try it. First Jeff uses it on my naked left foot and ankle and the crackling it makes is unbelievable. I don’t feel anything, but the crackling alone is obvious to both of us that indeed this is an “affected” area. Next he runs the therapy on my back, especially along my shoulder blades and down the center of my back. Again, Jeff is very surprised how much crackling the laser machine indicates and understands why my back hurts so much. Although I am pleased about the acknowledgment, it shocks me that my pain/RSD has migrated so quickly and aggressively. Jeff hopes to continue the therapy for the next 4-5 weeks and would like to see me just after Christmas.
I go into the hallway and open the door leading to the waiting room. I tell Mom that I am done with Jeff and ready to see Elizabeth. She stops reading the book that is her latest obsession and gets up to follow me to Elizabeth’s exam room. I briefly tell her what Jeff and I discussed and what he did and she tells me that none of this surprises her. When Elizabeth comes in, she is warm as usual and is pleased to meet Mom.
Elizabeth asks me how I am doing with the medications and I tell her that I am doing fine but my pain level continues to go up. She is adamant that I am not taking enough Neurontin. I tell her that I don’t want to be loopy around the boys and that I have responsibilities with them which includes driving. She tells me that the Neurontin will not make me loopy and that’s why she prescribed it the way she did. She tells me that if I don’t take enough medication, how can the pain be controlled? I begin to cry and my Mom tells me that she agrees with Elizabeth. Once I begin crying, I notice that I can’t stop and all my frustrations come out: how can I clean my house when I can’t afford a cleaning lady and my husband works full time; how can I be an active volunteer at the boy’s school if I can’t keep some of my commitments due to the pain; how can I go to physical therapy when I can’t afford it and the type of therapy is not available in my area; how can I function fully as a Mom to the boys when Michael travels at times and works overtime and I take all these medications; how can I control the panic situations in public that I have never experienced before in my life; how can I rely on people to help me when some people seem to come from nowhere and help and others I expect to be there just vanish……I go on and on and on. Mom holds one hand and Elizabeth holds the other as I continue to sob and blubber and then apologize for blubbering. Both Mom and Elizabeth tell me that I need to let this stress out and Elizabeth says that she can’t help me fully if she doesn’t understand or know what is going on outside of her exam room. Elizabeth is indeed worried about how quickly and aggressively the RSD is spreading and she is concerned that the time between the onset of my initial RSD symptoms and treatment goes back before my accident. She is still hoping that I will receive some benefit from the stimulator and will refer me to the doctor who performs the procedure.
As I pull myself together, she and Mom look at my feet that are bare from my exam with Jeff. Elizabeth sees that my toenails on my left foot are continuing to harden and turn yellow. Both feet today are dry and my skin is very scaly. She tells me that because I continue to have the back pain, particularly in my low back where the MRI shows mild degeneration, that she wants to perform a Fluoroscopically Guided Lumbar Sympathetic Ganglion Block at Left L4. Mom winces and tells me that I will not like it, but she knows that sometimes after the initial 24-48 hours post block, some patients have incredible pain relief. She tells me, however, that my pain will get worse before it gets better and that there is no way that I’m going to be able to go out to dinner tonight. Mom stays with me as the block is performed in the next room and after it’s over, Mom helps me get ready to leave. We don’t stay for me to make a return appointment; Mom’s main objective is to get me home right away before the pain increases.
On the drive home, Mom is adamant that I must phone Tim’s wife and tell her what happened and that I won’t be able to keep the dinner date. I am equally adamant that everyone else go without me, but Mom tells me that she will not leave me home alone after this procedure. When I get home, Mom and I tell Dad what happened and he agrees that if I can’t go, they all don’t go. After taking my Neurontin, I make the call and extend my apologies.
I change out of my clothes and into my pajamas. As the day slowly ticks by, my pain level increases quickly. Mom sets me up on my loveseat and with the heating pad and my body pillow. She grabs a blanket and puts it over me and then tells the boys that if they need anything, they must ask anyone but me. I call Michael and tell him what happened and that the dinner plans are cancelled. When he comes home, he can see that I’m in a lot of pain. For the first time in my “RSD life,” I am completely unable to escape from the pain. I moan and fidget from all the low back cramping which is worse than the low back labor pain I had with both boys. I continue to take more and more medication and I am barely able to eat. The pain makes me nauseous and it travels down the front and back of both legs to my feet. As I get up to go to the bathroom or just to give my legs some circulation, I am walking hunched over like an old lady. If I ever thought a car, bus or train ran me over before, words could not describe this level of pain; it was literally off the charts.
Eventually I did fall asleep on the loveseat. Mom told me the next day that I was whimpering, moaning and crying in my sleep. I knew it was true because at one point I woke up and tears were flowing from my eyes and formed a puddle on my pillow. By far it was one of the worse nights of my life.
The next morning, there are several things Mom, Dad and I agree on: there is no denying that I have RSD; there is no denying that I have had RSD longer than we realized; there is no doubt that I need to take more pain medication; there is no doubt that Michael and the boys will need to do more house chores and over my dead body will I ever have another sympathetic block again.
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