"Happiness is a Choice." quote taken from an interview of Drew Barrymore by Kevin Sessums

Thursday, July 29, 2010

Friends

Through out my life, I have noticed that you truly learn who your friends are when you are in crisis. The first time I experienced this since being a mom was when our oldest son suddenly became incredibly ill during our younger son’s birthday party in June 2005. Our oldest son has asthma and yet it was clear that what seemed like a mild cold the day before was suddenly much, much more. It was a Saturday, but his pediatrician was on-call. After speaking to his pediatrician twice and reporting his increasing temperature, he got irritated with me and said that if I was that concerned, I should take him to the ER. So in the middle of the birthday party, Mom and I took my oldest to the ER and immediately was he admitted with pneumonia. When we called Michael and told him what was wrong, I then spoke to a couple of adult female friends who were at the party and asked him to pack some things so I could sleep with him at the hospital. After the party was over, Michael brought the packed items and then went home with our youngest son while I stayed at the hospital. The next evening, I came home so that my husband could take a turn at the hospital while I returned calls and got some much-needed sleep. One of the calls was to my best friend who was also the godmother to both boys. I was exhausted so the conversation was short, but I told her how he was doing and I thanked her for helping pack things for me and also helping to pick up the house after the party. We made plans to talk again the next day. I left messages over the course of several weeks and even spoke to her mother who she lived with her and asked if my friend was sick or mad at me. No, she wasn’t sick and her mother didn’t know why my friend wasn’t returning my calls. To this day, we have not talked since. She hasn’t answered one email, one card, or one call. Recently my mom even called and left messages, one even with her mom, and still no return phone calls. Here I thought my best friend and the godmother to my sons would be there for me when one of my sons was desperately sick and instead she disappeared with no warning, no communication, no fight, nothing.

So when I was diagnosed with RSD, I was bracing myself for how people would react. My parents were upset because Mom knew exactly what RSD is and explained the diagnosis to my father. My brother was also upset and was also educated by my mother. They were taken aback that a woman who was always a tomboy and had bumped and bruised her way through life was suddenly a RSD patient. Yet despite everything, they have been by my side and have listened to all the highs and lows I have experienced throughout this journey.

But when it came to friends, word spread quickly among our school’s PTA that I was now ill. A dinner-delivery sign-up was put together by a PTA member and several dinners were indeed delivered to our home. Some women who barely even knew me signed up and indeed delivered some of these dinners to our home. Others who I knew better did not sign up and at the time I figured that they were too busy, didn’t want to cook, it was the holiday season or money was tight. I never took personally who didn’t sign up, but was incredibly grateful to those who didn’t even know me and yet brought these incredible meals.

So after the holidays were over and I continued to be symptomatic, it was amazing to see who called, who asked how I was and who even asked if there was something they could do. A couple of closer friends did all of these things initially and even suddenly dropped out of sight. Again, calls don’t get returned, emails are ignored and I don’t see them at all. It hurts me like crazy and I wonder if this is about the RSD or if this is just the way they are; they make friendships, dump them and then move on.

What has surprised me the most is that some of them were not what I would call “friends”; we didn’t have get-togethers beyond play dates and didn’t socialize outside school-related activities and yet I figured we had enough in common for them to at least check on me, ask if I was okay, or did I need anything. It was disappointing that they wouldn’t do the simplest acts of kindness.

However, what was surprising was how many people who I barely knew did indeed do these simple acts of kindness and, as a result, have become friends. It is not so much the act itself that makes it so special; it is the fact that they THINK to offer or THINK to call that makes this kindness extra special. It is nice when you don’t even have to ask because they offer instead.

Unfortunately it happens all to often that when someone is diagnosed with an illness, some people act is if it is “contagious” even if it isn’t the case. I’ve seen this happen to people who I have been literally at death’s door and I’ve seen this happen to people who have something that is permanent yet not fatal. Regardless of whether the person who does this is an acquaintance, a friend, a family member or a best friend, the pain caused by this “desertion” is indeed devastating. I wish people who have behaved this way recognize that indeed they could have done more for their friend in need and I also hope that this never happens to them. People need to learn that these acts of kindness not only help the person in need, but helps those who do the act learn more about themselves.

So to those who have been there by my side the entire time since my accident to now, thank you. To the friends that I am making now as a result of this blog, I understand how it feels if this has happened to you and you are not alone.

Wednesday, July 28, 2010

Money Doesn't Grow on Trees

January 20th comes when I’m actually having a reasonable day pain-wise. I see Jeff first who continues to be the enthusiastic, positive and testosterone-filled man as before. He wants to check the alignment of both my pelvis and my hips and he wants to perform the laser treatment again. He and Elizabeth are both concerned that my pain is continuing and migrating with no STOP sign in sight. He is pleased that I rank my pain level today as a 4, but he also understands that there is no rhyme or reason why one day or moment my pain level is low and then the next day or moment it will be through the roof.

After I lay down, Jeff tells me that my pelvis is still misaligned and my range of motion at the pelvis is decreasing. The tone also continues to be abnormal and I tell him that I continue to have pain in that region. He notices that both legs now are very tender, particularly from the knee down and now the tone of my muscles in my lower extremities is abnormal. This is a huge step back from a month ago and we both know that if I continue to lose my muscle tone in my legs, it will become more and more difficult for me to walk. Once again my right hip is elevated despite wearing only tennis shoes that are at the same height as the Aircast. Jeff manipulates my right hip so that it is once again aligned with my left hip. Although the MRI on my back showed lumbar disc displacement, Jeff notices that I have thoracic disc displacement as well. Jeff repeats the laser treatment on my back only and once again the machine crackles and buzzes. Jeff tries it on himself to make sure that the machine is working correctly because it is making so much noise. Indeed the machine is working just fine because it is completely quiet on him, but when he puts the laser on my back again, the noise is incredibly loud. So despite my lower pain level, I am getting further and further behind the eight ball. Jeff thinks that I must embrace the spinal cord stimulator as my E-ticket to some real pain relief.

When I switch rooms to meet with Elizabeth, she too wants to discuss the spinal cord stimulator. When she first introduced the stimulator option to me, I was adamant that I wanted to try water therapy first. The problem is that none of the physical therapists in our area offer water therapy. I also had no idea the financial issues surrounding the therapy itself. I don’t know why, but I thought that because this was linked to an injury, I would be given a certain number of therapy sessions at little or no cost. I had no idea that the co-pay would be $20 each. That doesn’t sound like a lot of money until you realize that three sessions a week costs $60.00 for a monthly cost of $240.00. I have to be realistic about the financial burden my illness is now putting on my family. Not only am I not working, but I am literally spending money on something to do with my RSD every week. Since last July, I went from being the least medically treated person in our home to the most medically treated person in our home. I have had countless doctor appointments to attend, x-rays to endure, two MRIs to lie still for, and medications to be filled. All of this costs money, money, money and we do not have endless amounts of it to pay for all of these costs. Health insurance is wonderful, but those co-pays add up quite quickly.

I tell Elizabeth that all I can think to do is maybe try some water “therapy” of my own at the local athletic center and see if my insurance will pay part of my monthly membership. When our community pool opens in May, then I can continue the therapy literally in my own neighborhood from May to September, and then go back to the athletic center. It is the cheaper option and it gives me a chance to try water “therapy” before giving in to the stimulator. Elizabeth gives me two weeks to try to work something out before putting the stimulator front and center as the next step in treating my pain. In the meantime, I need to continue to take all my medications, including the newly prescribed Prozac. Again, if I am not properly taking my medication, my pain levels can’t be controlled.

Today I leave their office feeling like a child who has disappointed her parents, yet I can no longer ignore the financial burden my illness is now putting on my family. I’ve asked Elizabeth if I need to prepare myself for applying for permanent disability and she says that it is too early to say if we’ll cross that path. Michael says that obviously this money would help pay for all my medical expenses but that is not how this works. Last time I checked, money doesn’t grow on trees, it is illegal to rob a bank and I am not well enough to work. I know that both Jeff and Elizabeth are frustrated, but honestly, how do they think I feel?

Tuesday, July 27, 2010

Websites and Ribbon


This is another one of those “short and sweet” blogs.

I have been seeing on a couple of RSD related sites that so many people do not understand the true definition of RSD, whether they are a patient or wondering if indeed they do have RSD. This confusion is heightened when a patient is seeing a doctor like a GP who is uneducated about the syndrome. For one of the best “definitions” of RSD that I have personally seen online, please visit http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome. If need be, print it for yourself, your doctor, your friends, your family……anyone and anybody who needs to know more about this condition. Some people honestly think this is about some mild discomfort…..what is the big deal? Well it isn’t about some mild discomfort AND it is a really big deal because it is entails so much more than “putting out the flames.”

Also, I am VERY EXCITED to see that indeed RSD has a ribbon! I believe that it was designed by Tracy West Glasgow. Some RSD patients have even had this ribbon tattooed on their body…..problem is that this can cause more RSD symptoms so I think I
will pass on doing this myself.

And, lastly, I have literally just learned about another RSD website called American RSDHope http://www.rsdhope.org/. I plan to learn more about this site and see if its an information site or if it offers more……stay tuned!

Monday, July 26, 2010

This Left Leg and Ankle Does Not Belong to Me

Mom and Dad have gone home now to California and the boys are back to school after enjoying immensely their winter break. I continue to have aching, burning, and pins and needles pain throughout my body. My shoulders are tight, my elbows and wrists ache and my hands keep falling asleep. The middle of my back burns and aches, my entire low back aches and is stiff and both hips continue to feel like firecrackers. My entire left leg, ankle and foot burn, ache and tingle. I obsessively continue to look at my bare left foot and ankle and compare it to my bare right foot and ankle. Have you ever had the feeling that a part of you no longer belongs to you, like a foreign limb has attached itself to your body to replace your limb that was once there? That’s how I continue to feel about my left leg and ankle. They no longer match my right foot and ankle in color or size. It looks like my ankle swallowed a golf ball and it appears my left foot is thinking I’m pregnant, all swollen like a muffin top. My toes on my left side are strangely positioned on my foot. Rather than lining up straight and together, my big toe has a big gap between it and the rest of the toes and half of the toe nail is changing in texture and is turning yellow. The next two toes are straight and almost on top of one another. The second toe’s nail is completely yellow, hard and crusty. My fourth and fifth toes look like they are spooning, tilting to the right. The pinky toe continues to keep its bruised look and the nail has not grown since the accident in July. The pinky continues to burn on all sides, at its base and in-between the fourth toe. I look at this foot and ankle and feel no connection to it other than pain. If it is possible to divorce yourself from a body part, that’s what I’ve done with this part of me. I care for it for the sake of the rest of me but do I love it? No.

I have read various early reports of RSD and how some doctors “treated” the syndrome. Some doctors amputated the affected area, thinking it was as simple as that, not realizing that the pain only continued and for many, it got only worse throughout other parts of the body. Some doctors amputated the affected area on the insistence of their patient and many times the same outcome occurred. It seems such a foreign concept to want to amputate a part of you, but now I can understand and accept the decision by looking at this foreign object that once was my left foot and ankle.

My new appointment for Elizabeth is set for January 20th and I know that the main topic of conversation will be my pain levels and the dorsal column stimulator. Unfortunately Elizabeth does not implant them herself, but she understands how they work and the potential benefits patients can receive from them. After discussing my case with some of the other doctors, they all concur with the decision. However there is also an insistence that I also have some extensive blood work done as well. If she didn’t order it, then it would be ordered by the surgeon anyway. I have no idea what labs she plans to order; obviously there are things that these doctors look for.

Before my parents left, we discussed this July accident and wonder if indeed there was another accident that could have gotten this RSD ball rolling. Two accidents stand out in our minds. The first is a hamstring accident that occurred in April 2005. Michael and I had literally just purchased a condo and on moving day, as normal course, I tend to clean as items are brought into the house. I was washing the kitchen floor before our refrigerator was delivered. As I moved on the wet floor, my left leg slipped on the floor and suddenly I was on the floor in the splits position. I heard several things pop and tear in my left leg when I went down and the pain was horrific. My boys came running and they called for Michael. Michael immediately wanted to lift me off the floor by pulling me up from under my arms, but I wouldn’t let him. I knew that if the pull was not complete, the injury would get worse. With a great deal of sheer will power and a large breath of air, I was able to move my left leg enough to no longer be doing the splits. When Michael then moved me, the popping and tearing was heard by all and, of course, I hollered from the pain. Michael moved me to a captain’s chair and gently guided my left leg up to another chair. Within five minutes, I realized that I would not be able to move from the chair. We made the decision to call an ambulance and at the hospital they told me that indeed I tore my hamstring plus other ligaments. Without any physical therapy other than swimming, the leg healed completely in one year.

Then in 2007, I hurt my left leg again while at the playground with the boys. It was after school and several of us moms decided to take our children to the “green park” nearby. By “green” I mean that the floor of the playground itself was made from recycled materials like tires. So I was standing and talking to a bunch of moms while our kids were playing when my oldest asked if I would push him on the swing. When I moved around, my left foot was at the concrete block that surrounded the playground and I literally fell over it. When I got up, I had a pretty nasty gash on the front of my left leg, just above my ankle. Although it was bleeding and burning, I’ve always been a tomboy and ignored the injury so I could push my oldest on the swing. When I got home less than two hours later, I thoroughly cleaned it and put a dressing on it. Within two days, however, I had to go to the doctor because it was hugely infected. When my internist saw it and asked me what in the world I did to myself, I told him this story. We both realized then the “green” floor of the playground contains latex and since I’m allergic to latex, I not only had an infected leg but I was also experiencing a latex reaction to the materials. After two weeks of antibiotics, follow-up doctor visits and showering with my left leg in a garbage bag, my leg healed, leaving a pale half-dollar sized scar.

So as I wait for my next appointment with Elizabeth, I know that I need to tell her these stories so that she understands that both leg injuries within the last several years have been to the left leg earlier. Is it possible that a torn hamstring or a stupid playground injury set the RSD ball into action?

Sunday, July 25, 2010

Some Calm after the Storm

Within 48 hours of the sympathetic block, the intense pain comes and goes and Mom gets her wish for snow. Mom and Dad stand at the front door, drinking in the glory of its beauty because it isn’t a bit of dusting; no, it is an actual snow that carpets the roof and ground and blankets the cars. Mom is thrilled and Dad is busily taking pictures as the boys dance around. No one cares that it is cold outside; it is the magic of it that captures all of our attention and heightens the excitement of Christmas.

Mom is surprised that Tiffany, Elizabeth’s assistant, did not call me to see how I was after the block and, frankly, so am I. I figure that their holiday work schedule has something to do with it and don’t take it personally.

What is obvious is that there is no magical relief from the sympathetic block. Yes, the pain from the block itself is gone, but my back pain from before the block is now at the same level. In other words, the sympathetic block is a failure.

I tell Michael and my parents that I am going to complete my medical directive and give a copy to Elizabeth, my internist, all of them and my brother Jon. Mom has already given me a medical alert bracelet which lists my allergies and asthma on the front side and then RSD and my name on the back side. Michael and I know that we need to update our will as well. Texas will not accept our will signed in California.

There is no doubt that having my parents at our home relieves a lot of the stress. Despite their own health issues, they are four extra hands, four extra legs and two extra mouths that help get things done. I call Elizabeth’s office after the holiday and tell Tiffany what happened. Again, she is disappointed and plans for another block are cancelled. The pain is to go forward with the dorsal column stimulator, but Elizabeth wants to see me beforehand. Mom knows that I have been hesitant about the stimulator, but she has used one before and for several years it gave her a lot of relief. Mom is sure that I will benefit from it greatly. I tell Tiffany that I will make an appointment to see Elizabeth after my parents leave in January.

A few days later, there is more snow and this time the boys can play in it and build miniature snowmen. Mom is elated that her wish came true and Dad takes more pictures. Despite all the beauty of it, I am forced to stay inside for fear I might slide and fall. I am thankful that we live in an area that gets little to no snow; what would my life be if I lived in New York like my brother? When Michael received word from his work that he would be transferred out of California, we were originally told we would be moving to Denver. We were really excited because we were in Colorado for about two weeks when my brother lot married two years earlier and Michael had been there a couple of times since. We really loved it, particularly Boulder and the surrounding areas. Two days later we were told by corporate “Sorry, we didn’t mean to say Denver; you are moving to Dallas.” Although it took us some time to get over the shock and switch gears on looking for housing and looking at school districts, in the end it was obviously the right decision. Despite all that is going on with my body, I believe that there is a reason for everything, even if I don’t understand or know what that reason might be. Where would I be if I was diagnosed in Colorado with RSD instead of Texas…..would I have been diagnosed at all? Would I end up with a terrible doctor? How would I get around in the snow? Regardless of what your religious faith might be, I believe that there is a higher “being/force/God” and my health has to be part of the reason why we moved to Texas instead of Colorado. I wonder what other mysteries of this RSD syndrome will develop over time and if I will ever receive any answers as to why I am where I am today.

Saturday, July 24, 2010

December 22 - The Bloody Hell Day

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.

Friday, July 23, 2010

Way Too Much

This will be a quick blog tonight since I am completely exhausted tonight. Today I went out to purchase school supplies for my boys and did some grocery shopping. The boys went along and were actually helpful, but it still doesn’t change the fact that I went to three stores today and that is WAY TOO MUCH for me to do in one day. I still have not fully accepted that what I want to accomplish is not always a reasonable expectation, especially when it involves a lot of walking. So I will blog again tomorrow and it will be about one of the pivotal appointments I had with Elizabeth.

Also I want to say “thank you” to those who commented about yesterday’s blog. Honestly, I can’t say enough that if you don’t have the right doctor managing your RSD or any other auto-immune disorder, you are screwed. Don’t hesitate to change doctors if you feel that you are not receiving the care, respect and acknowledgment from your doctor. It is not your doctor’s feelings you need to worry about; you need to stand up for yourself and search for the doctor who is right for you. I was lucky and was referred to the right doctor for me once I was diagnosed. I know that for many, many people, this is not always the case.

Thursday, July 22, 2010

Changing Course

I am changing course tonight to focus on what I am hearing from others, particularly on Facebook which has a RSDSA page for RSD sufferers to visit and chat with other sufferers.

First and foremost, you must have a great doctor who completely accepts, understands and manages your RSD. I have to say that a general practitioner is not going to be that doctor. This needs to be a pain management specialist or a rheumatologist or both. Check with your insurance about the pain management specialists in your area and only consider those who sub-specialize in auto-immune disorders. Not all pain management doctors are alike. Some specialize in work-related injury cases, some specialize in chiropractic medicine and then there are those who specialize in auto-immune disorders, pediatrics, etc. Treat your RSD like you would if you were diagnosed with any other condition, whether it is diabetes, cancer, ulcers, hearing loss, etc. You wouldn’t go to an ENT for diabetes treatment no more than you would go to an oncologist for an ulcer. If you go to the right doctor for your RSD, I promise you it will change your life for the better. You don’t want to fight with your doctor about what is happening with your own body.

Second, accept the fact that indeed RSD is an auto-immune disorder. Many, many people who have RSD either already know they have another auto-immune disorder or will be diagnosed with one later on. Before I was diagnosed with RSD, I had already been diagnosed with psoriasis and poly-cystic ovary disease. Since the RSD diagnosis, I have also been diagnosed with Fibromyalgia. Because my mother has PsA (Psoriatic Arthritis), apparently I have a 50% chance of also having it. Can I get my insurance to pay for the diagnostic test? No. Now that I have applied for permanent disability, I am wondering if SSA will push for that test to be done. After all, it would be nice to know if I have another auto-immune disorder that is also a nasty, destructive syndrome.

Third, please get a medical alert bracelet or necklace. I have one and it is always a good idea for anyone who is diagnosed with an illness to get one. If something happens to you and an EMT sees that alert, it will give him/her a “leg up” of knowing how to treat you, move you and what might be wrong with you.

Fourth, make a list of medications you take and put it in your wallet. Again, when you have the alert bracelet, the EMT will either call the medical alert company to see if you listed meds with them or will look for other clues on you or your purse/wallet. I have given my husband, brother and my parents the same list. In fact, I need to update my own list so this is reminding me to do so.

Fifth, read about RSD. It is so difficult to find information because so little has been written about it. I have one book that I consider my “RSD Bible” and it called Living with RSDS (Your Guide to Coping with Reflex Sympathetic Dystrophy Syndrome). It is written by Linda Lang and Peter Moskovitz, MD. My mom ordered it for me through Borders. On the cover, there is this quote “Clearly the most readable, comprehensive, and up-to-date book on RSDS that I have seen.” This quote is made by Paul R. Charlesworth, President of the RSDSA. I will admit that I haven’t read all of it because I find it difficult to read (aka depressing). BUT, it covers everything from the patient’s point of view (Linda’s) with the clinical knowledge of the syndrome that is out there today (Peter’s). I told my doctor about the book and asked her to please read it.

And, lastly, have a network of people who you can rely on. It doesn’t have to be a large group of people, but they need to be the types of people who will listen to you without judgment and help lift you out of the depression pit when you fall into it. That was why I started this blog……I wanted other RSD patients to know that you are not alone, that I “get you” and that if I put all the highs and lows of my own experience out there, then you know I’m being candid and honest. Rely on that “inner voice” that tells you that this person is not in my corner or I need to change doctors or I need to change or add medications because I am not getting the relief I need. You have to be your strongest advocate because, frankly, if you aren’t, who will be? If I listened to my irritated orthopedist, I wouldn’t be with Dr. Elizabeth today. It was my “inner voice” and the support of my parents, husband and a few close friends that kept saying “something is wrong” and gave me the momentum to continue to get answers to my problem. Thank God for them.

So I will return to my normal “blog” tomorrow, but I just felt compelled to stop telling just my own story and “address” some of the comments, complaints and concerns that I kept seeing on the RSDS Facebook page. So today’s blog is dedicated to all of you and I hope this helps.

Wednesday, July 21, 2010

Mom and Dad Arrive

My parents arrive just a few days before Christmas, flying on Southwest and arriving at Dallas Lovefield. My sons go with me and we literally park at the only remaining handicapped parking spot. Not only does my mom need it, but now so do I. I hang my red handicap placard, grab a crutch and the three of us go inside.

To say that the boys love my parents is an understatement; they adore them. My mom does “quieter” things with them like arts & crafts, baking, reading, watching movies, etc. She is a confidant and a cheerleader. My dad loves to bowl and play cards and the boys are learning all of his tricks. He is more of the disciplinarian with them, but he loves them and they love him too. So when the boys learned that they were coming for Christmas, they are ecstatic. Not that they aren’t normally anyway, but since this was Christmastime and it was assumed they couldn’t come due to Mom’s recent surgery, this visit was extra-special.

So when their flight lands, the boys want to wait at the bottom of the stairway where the passengers then go to claim their luggage. Eventually they arrive and they finally see me with the crutch and Aircast. As I thought, the RSD reality is now very real. Their active, strong daughter is now a RSD patient.

Once we get home and they get settled, I show them how the Aircast comes on and off. They look at my left foot and ankle and immediately can see that the base of the pinky toe still looks bruised. Mom doesn’t like the coloring of my entire foot and she also notices the nail changes on three of the five toes. They see the swollen ankle and the peeling between my toes. They notice that both feet are incredibly wet and yet the skin is breaking down at the heels. They notice that even with bare feet, I walk at times like I have a pole up my ass.

Elizabeth had asked me to stop shaving my legs to see if I had hair growth changes and indeed I do on both legs. Shaving my left leg in particular is like having a mini-EMG and now that it is winter, I don’t give a damn about shaving.

The search for a physical therapist is going nowhere. Elizabeth wants me to receive therapy that includes water. I would not actually get in a pool, but I would be able to get my feet wet for some exercises and massaging. Turns out that none of the local therapists have any sort of water therapy and my insurance limits what kind of therapy it will allow and I pay $20 co-pay for each session. Elizabeth wants me to have three sessions a week so every week I would pay $60 just for therapy, let alone doctor appointments and medications for me and the rest of my family. How in the world can I afford that let alone handle someone “desensitizing” my foot? I swear if someone even tries, I might just clock him.

I am also horrified to experience some panic attacks in public. While trying to finish the Christmas shopping, I am noticing that by the time I am at the payment aisle, I am ready to crawl out of my skin. The room begins to spin, the pain level is high and I feel like I’m going to throw up; all I want to do is get out of there. More than once a cashier has asked me if I’m okay and I honestly say I’m not. I have always found it difficult to hide my feelings and emotions and now these overwhelming emotions are no different. I am perfectly fine with Mom going with me to see Elizabeth at my next visit, but I also know that my emotions will get the better of me. I am not doing what Elizabeth wants therapy-wise, I am now crying AND panicking in public, my left foot nails are ugly and overall I feel like I’m getting worse. What else can I expect to go wrong?

Tuesday, July 20, 2010

Meeting Elizabeth – Part II

By the time I see Elizabeth on December 15, I am desperate. Despite the fact that I am now taking Klonopin, Prozac, Neurontin and Ultram, my pain level is growing and growing. My back is absolutely killing me, let alone the continued burning in my left foot, ankle, leg and hip. Michael is continuing to push on my trigger points in the thoracic area and although I clinch my teeth and swear under my breath, this is the ONLY WAY I can get any sort of mild relief from the pain. My low back is also killing me and, of course, it seems I am dropping everything only to have to bend over and pick it all up. The crying episodes still happen….not as often, but still more than my comfort level.

Elizabeth is very pleased that taking Klonopin and Ultram at bedtime means I am sleeping more. Unfortunately, however, I am rarely sleeping in bed anymore due to my back pain. Not only is our black loveseat my friend during the daytime when needing to put my feet up, but this is now becoming my new “bed.” Michael is now alone in our CA King bed most of the time and occasionally one of the boys joins me on “sofa city.” There is no doubt in my mind that he feels abandoned and is wondering what the hell is going on?

Elizabeth has the MRI results and it shows 2mm BB disc bulge at L5S1. She quickly mentions that surgery might be necessary at some point and, frankly, I am totally against it. It has been my experience with my mother and others that unless you injure your back due to an accident or fall, once you have one back surgery, you continue to have more. She does a Caudal Epidural Steroid Injection in hopes that this time I will have some real pain relief. She encourages me to continue to use the heating pad and ask Michael to push and release those trigger points. I am to continue the current medication regimen and fill my Ultram prescription. She wants me to begin physical therapy on my left foot which scares the hell out of me because every time someone examines it, it flares up hours later and punishes me with more cramping, burning and throbbing. Her hope is, however, that the therapy will desensitize the area rather than flare it. She also wants to repeat the sympathetic block in the next 7-10 days and then have an appointment with Jeff, the chiropractic doctor who works under her pain management umbrella.

There is no doubt that Elizabeth is being incredibly aggressive in hopes to halt and/or lessen the migration of my pain. It has become a personal mission of hers to help me. She meets with other pain management specialists in the area once or twice a month and/or has phone consultations on an “as needed” basis. Together they discuss their most challenging cases in hopes that they can learn from one another and, perhaps, someone will suggest something that hasn’t been considered before. She asks me if she can include me in this “discussion” and I willingly give consent. After all, how can it hurt for some of the top pain management minds in the North Dallas area to ponder my case?

She is pleased for me that my parents are coming for the Christmas holiday, thinking that it will give me the emotional ‘boost” I need. She knows that Mom is an RN and I tell her that most likely she will be with me at the next appointment. I make it for the 22nd to see both her and Jeff and hope that in the next 8 days, I will find some pain relief so that I can fully enjoy my time with my parents.

Little did I know that The Grinch would be stopping by and temporarily live at my home.

Monday, July 19, 2010

Highs and Lows

On December 9, the day after my initial consultation with Elizabeth, I receive a call from her assistant Tiffany to see how I’m fairing after the nerve block. Despite receiving some pain relief immediately after the block, slowly that afternoon the pain begins to return and then exceeds where I was before. I can tell that Tiffany is disappointed and she is aware that I have my next appointment on the 15th.

She isn’t the only one who is disappointed. My pain in my back, from my neck to my low back, is worsening. The thoracic pain is so bad that I have trouble rolling from one side to another when in bed and the heating pad is giving me absolutely no relief. Several times a day, I ask Michael to literally push on my trigger points to help release some of the pressure. I have pain running down the back of my left leg and my elbows and wrists are constantly aching. I notice occasional changes in my handwriting when my right hand tingles.

In the meantime, my oldest son’s birthday is approaching quickly and I have to finish my Christmas shopping. I am thankful that places like Target and WalMart have carts so I have something to hang on to.

Since mid-October, Mom has been recovering from a horrific operation on her neck. This is another surgery she has endured as a result of her Psoriatic Arthritis. After 18 days in the hospital, she was eager to get home and yet she knew her entire recovery will last at least one year. I am thrilled, then, when she and Dad call to say that indeed they will be able to come for the Christmas holiday after all. This is the first piece of good news I have received in a LONG time, yet I know this will also be the first time they will see me since the accident and diagnosis. I know that they know what to expect, but everything is so much more real when you see things with your own eyes and hear things with your own ears. I am so pleased that we did put forth the effort to decorate the house and I am excited to hang up their stockings with ours. Mom is eager to meet Elizabeth and is hoping that I will have an appointment with her while they are here. As it turns out, Mom’s oldest half-brother and his wife will also be in TX for a short visit to see their son and his family who live about one hour away. Dinner plans are made for everyone to get together for the first time in several years.

Despite my renewed excitement for the Christmas season, I can’t deny that I am not getting any better; I am only getting worse. I feel like a dark cloud is following me like a shadow and I have absolutely no idea how to get rid of it.

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On a complete side-note, I have been asked if I feel like a guinea pig. I don’t know if that is the right term, although I completely understand the question. Since my accident in June 2009, I was on a quest to seek answers to what indeed was wrong with me when my breaks healed but the pain worsened. Other than the orthopedist, I have been fortunate that every doctor I have seen since has completely believed that indeed something was terribly wrong. The struggle has been to diagnose what is wrong, how to treat it and if there is anything else going on that we just don’t know about yet. In future blogs, this will be addressed more and, unfortunately, this is a problem that I continue to battle today.

Keep the comments and questions coming and thank you for reading!

Alexia

Sunday, July 18, 2010

Where is That Train That Ran Me Over?

As many of you noticed who were looking for my latest entry yesterday, I did not post one. Unfortunately from the moment I woke up yesterday morning, I was miserable. For the fourth time last week, I had a migraine and my low back was screaming at me. Eventually after taking a really long, warm shower and using the heating pad off and on for a couple of hours (yes, even in the middle of summer, heating pads are sometimes necessary!), the migraine and low back pain lessened, but nausea took over and both legs were aching. By late afternoon, both feet were aching too and by the evening my right foot was having muscle spasm and kept jerking from the pain. After taking an Ultram and then a really warm bath, the spasms lessened but about a half hour later, I finally gave up and went to bed. Except for a quick trip to the grocery store and taking the boys to a birthday party, all other “plans” for the day were put on hold.

This is a major problem with RSD and all other auto-immune disorders……you can be minding your own business and doing absolutely nothing out of the ordinary, and yet some mornings you will wake up and wonder “where is that train that ran me over?” Sometimes this pain happens in the middle of the day, other times at night. But when it happens first thing in the morning, it seems especially cruel and unfair. How can I carry on with my normal, daily responsibilities when I can barely move without grimacing and I can barely eat without throwing up?

I wanted to respond to Sue who left me a comment two days ago on the blog itself. As I have said before, many times RSD is a chameleon. It can behave like other auto-immune disorders and, at times, it can trick you into thinking that either you are getting better or you don’t have it at all because you have a string of days in which you feel pretty good and then, almost as a punishment, the symptoms come back hard and without mercy. These strings of “good days” are like gold when they appear and its crushing when they go away, again.

As I write more of my blog, Sue, you will also learn that osteo-arthritis and fibromyalgia will also be added to my RSD diagnosis. My mother who was finally diagnosed with PsA (Psoriatic Arthritis) had also been diagnosed with “incompetent bone” (which always seemed incredibly stupid to me because to be considered “incompetent” would mean it was once “competent” and bone doesn’t “think” for its own) and, for a while, considered the possibility of Sjorgens. My mom now sees a fabulous Rheumatologist who is one of the leading experts of PsA in the United States.

I COMPLETELY understand your comment of your baffled kids because mine are also baffled about what is going on and what happened to the “old mom?” Some of my friends and family also have shown little interest, understanding or sympathy for what I’m going through and then others have risen above and beyond what I would have ever expected.

I do completely understand what you and so many other RSD patients go through……the pain, frustrations, resentment and the “death” of the “former” self. As I continue my entries, you will learn more about my personal experiences. My ultimate hope is that my blog will perhaps play a small role in helping others who live with auto-immune sufferers understand what we go through and that maybe, just maybe, these entries and comments will encourage more research into the mysteries of RSD so that indeed our symptoms can be better controlled and perhaps go into a remission.

Thank you so much Sue for your comment!

Friday, July 16, 2010

Meeting Elizabeth

I arrive to meet my pain management doctor for our initial evaluation on December 8, 2009. I arrive alone which might seem odd to some but I have noticed that on the rare occasions that Michael and I go to see a doctor together, I am much more wrapped up in Michael’s reactions and demeanor. Today my focus needs to be only on me.

When I go inside, I am given a series of papers to complete by the delightful and sweet assistant named Heather who booked this appointment almost a month ago. I am surprised (and relieved) that there is a four-sided picture of the human body for me to mark my areas of pain. No one has ever asked me before if anything else hurts besides my left foot, ankle and lower leg and by the time I am done with my medical “artwork,” I am dismayed by the mess I’ve just made on the page. I give Heather all my paperwork and wait for my name to be called.

In no time at all, Tiffany calls me back and after asking me a few questions, I am left alone in a rather small room that is very clinical yet intimate. Tiffany returns and I meet Elizabeth.

Elizabeth? Yes, that’s what I call her. I use her “proper title” on occasion when discussing her specifically to others, but when you have literally poured your life story to someone and cried off and on while telling it, you drop the formalities.

So who is Elizabeth? She is a pain management specialist who is blonde, petite, 30ish and a human energizer bunny. And honestly, I mean this in the most complimentary, sweetest way possible. It is clear that she is intelligent, sweet, kind and puzzled by my case immediately. She is very concerned that my pain has migrated to other areas of my body, particularly my low back, hands, wrists, elbows and shoulder blades. She sees the Aircast on my left foot and the crutches and asks if I have a walker. Ironically I do because I purchased one for my mom to use when visiting us in TX. I hand her the MRI CD and she quickly looks at it while looking at the other notes from the foot surgeon. While doing a brief physical exam, she notes that I don’t complain of fever chills or unintentional weight loss (in fact, just the opposite), no shortness of breath or chest pain, no cough, no loss of urine or bowel function, no rashes, no reported memory loss, no hot or cold intolerance (except for ice on my left foot), no anemia or enlarged lymph nodes and no hay fever complaints.

She does see, however, that I’ve fallen into an emotional pothole and so far haven’t been able to climb out of it. I report muscle spasms and stiffness from my left hip to my left foot. The skin on my left foot has a grayish look about it……pre-morgue. I have nail changes on the same foot. This foot and ankle are still swollen. Both feet now sweat profusely, even when cold. My hands sometimes fall asleep for no apparent reason. There is no doubt that I am depressed, not sleeping and full of anxiety. In other words, I’m a hot mess. She is incredibly unhappy that the only medication I’m taking is the Lisinopril and the occasional Aleve because the Cymbalta, Elavil and Lyrica all made me so loopy that I was afraid to drive. She is concerned about my weight and we (half-jokingly) talk about how a breast reduction surgery (I’m a DD) would do me a world of good, but she states that we will address these matters later. Her goal today is to lower my pain level and depression. She wants to perform a nerve block at L3 and I agree to it, thinking at this point I have nothing to lose. As I lay on my stomach for the procedure, I apologize as both hands fall asleep and I need to shake them to stop the tingling and the sweat from my feet is now dripping on the floor. None of this fazes her and she tells me how brave I am and how well the procedure is going. I grab that “brave” comment like it is gold and promise myself to tell my inner she-demon that I am brave, no matter what that bitch says.

Upon leaving, Elizabeth gives me prescriptions for Prozac, Klonopin and Neurontin and gives me samples of Ultram to see if I can tolerate it. She orders an MRI of my back, thinking there are indeed other pain factors that are driving this RSD train. She tells me that the blocks only work best within the first six months of the pain. She is concerned, however, that I have been suffering various kinds of pain prior to the foot injury but that I have just excused it as other things (poor mattress, weight gain, running after two young boys, stress, previous work situations, aging, etc.). She has hope, however, that she will get to the bottom of anything and everything that is wrong with me and asks me to see her within 7-10 days. I make my return appointment and leave with a bit of optimism. There are several things that I know: I definitely have RSD, my drug “regimen” is about to begin, I have a new doctor who I like and who LISTENS to me and I need to dust off Mom’s walker. Yet despite this “progress,” I still worry…..am I too late to stop RSD from taking over my life?

Thursday, July 15, 2010

Where the Hell is the Off Button?

So on November 9, 2009, after four months of enduring severe pain, edema, and discoloration of my left foot and ankle, plus adopting crutches and an Aircast Walking Brace, the verdict is in…….I have RSD. Michael is home in a middle of a workday, watching me completely fall apart. In his best attempt to educate us both on what this all means, Michael gets on the internet and downloads a RSD Booklet. The handicap placard paperwork needs to be signed and turned in to the City. I cry harder when I notice that the doctor marked the blue placard box rather than the red temporary placard box. Michael leaves to turn in the placard application and it’s rejected because I didn’t sign the application on the bottom of the page. Without saying anything more, he patiently leaves again with the signed application and then proudly shows me the red placards when he returns, hoping that this will make me feel better. It turns out the foot surgeon marked the temporary and permanent boxes so by default the City representative issued the red placards. Michael is correct…..the red placards do indeed make me feel a bit better, although we both know that in six months when we need to renew them, blue placards will replace them.

I call the number of my new doctor and I am told by their assistant they have already received my records from the foot surgeon. Turns out, though, that their calendar is full and I can’t be seen until December 8. I make the appointment, not sure if I am relieved or disappointed. I am exhausted from all the crying and feel completely numb. Our sons soon will be home from school and they will have homework to do and I have dinner to make. Life doesn’t stop just because you receive bad news.

As the days pass and word spreads through family and friends, I read various aspects of the RSD Booklet Michael downloaded on my laptop. Most people who hear the news clearly have that “huh?” look on their face and with good reason. People have heard about MS and Lupus, but RSD is still that hidden syndrome that most people know nothing about. Crazy like a fox, a chameleon…..that’s what RSD is. Symptoms can change throughout the day and evening and sometimes some symptoms disappear to be replaced by others that tend to be nastier. People can clearly see that something is wrong…..I have the crutches now and the Aircast Walking Brace. Some people look at me, shake their heads and say things like “God, aren’t you healed by now? What’s wrong with you?” They are annoyed that I have the audacity to not be better and it takes all my will not to hit them with one of my crutches or say something wicked back. I have never been one who likes to take medication stronger than Aleve and now I am in so much pain that if they put crack in front of me, I would be tempted to use it just to try to escape the pain. The pain, the pain, the pain! Where the hell is the off button?

Now I am fearful of falling or slipping. I think about death every day. A few weeks earlier I am put on Lisinopril because my blood pressure is now high. Is it high because of the RSD or because I just have high blood pressure? What comes first, the chicken or the egg? Does it matter?

It is the holiday season……my absolute favorite time of the year. Once again we are hosting Thanksgiving and thankfully a friend offers to cook the turkey and bring it. PTA friends volunteered to bring dinner off and on for three weeks because I don’t have the energy or interest to cook. I am normally what I consider a “Christmas purest” and never decorate the house until it is December, but I ask Michael to get out the decorations two days after Thanksgiving in hopes that the magical spirit of Christmas will give me comfort. Unfortunately it doesn’t do a damn thing for me, but the boys are enjoying trimming the tree tremendously. The boys have reacted differently to the news of my diagnosis; Jared is quieter and watches me constantly. Aidan, however, is worried and now is having difficulty with his teacher. And Michael is continuing to see me cry and has no idea what to do. And I, of course, am my biggest critic. What a hypocrite am I? For months I told everyone that I knew something was terribly wrong and all I wanted was the truth…..the good, the bad and the ugly. I would rather know what’s wrong than not know at all. Now I know what’s wrong and I am flipping out. I want to scream, punch, hit, cry and feel sorry for myself and I do all of these things. I go into our closet and scream my bloody head off. I cry and cry and cry and then I get angry that I am not one of those pretty criers like you see in the movies. No, I am a sniffling, puffy, ugly crier and it only makes me cry more. I cry in public, on the phone and at home. Then I fill with rage because I have never been a crier and now I can’t stop. I am at my wits end, my pain level is increasing and now many of my clothes no longer fit because I have gained over twenty pounds since the accident. Yet despite all of this self-loathing, anger and pain, I do my best to put on my happy face fa├žade for the sake of my children and wait for December 8.

Wednesday, July 14, 2010

The Accident That Changed My Life - One Year Later

So how does one begin the “debut” entry of a blog? Is there a special protocol that must be followed to lay the proper groundwork or to pique the interest of your desired audience? I don’t know. I do think it requires the author to be straight-forward and not worry about who might understand your desire to turn your must intimate thoughts, feelings, and craziness into an online journal. I do hope, however, that for those of you who do have RSD (and/or another auto-immune disorder) and decide to read my blog on at least a semi-regular basis you will at least know that I understand what you are going through. For those who are my friends or family or know someone who suffers from an auto-immune disorder, perhaps this blog will give you a glimpse, a window into our world. I have always believed that life is messy, challenging and full of moments of great learning, insight, love and soul-searching. Living with an auto-immune disorder such as RSD makes life even more so. My goal is to blog daily and it will take a few days to take you on this journey from life as I once knew it to today. I ask those who know the story to bear with me as I educate others. There will be plenty of time to share, explore and discuss what is happening “at the moment” as time goes by.

So why today……why begin this blog on July 14, 2010? Well, this marks the one-year anniversary of an accident that eventually led me to this diagnosis. Little did I know that a freak home accident would change the rest of my life….forever.

So for those who have not been formally introduced to RSD, what is it? Well if I was being completely thorough in my terminology, I would call it RSDS (Reflex Sympathetic Dystrophy Syndrome). Some modern medical experts call it CRPS (Complex
Regional Pain Syndrome). It’s my own personal opinion that both terms inadequately describe the syndrome and I simply just refer to it (kindly) as RSD. Many years ago, RSD was simply described by doctors as “Causalgia” which means intense burning pain accompanied by skin changes. When the medical profession realized that this did not adequately describe the condition, the term changed to RSDS. Honestly, I really don’t care what doctors want to call it; I know it as a disabling neuropathic pain disorder that begins in one region of your body and then, if untreated, usually migrates to other areas of your body which then entirely affects all aspects of your life: medically, emotionally, financially and socially. Have you ever been at a function that is suddenly ruined by an unruly child? RSD is that unruly child and that function is your life.

So how did this unruly child enter my life? Honestly, that is still the big mystery. Most times RSD is undetected and misdiagnosed for a long time because it doesn’t start off as that unruly child; instead it is a sleeping baby that grows into that unruly child. There is some suggestion that this RSD “door” opened almost ten years old, but it was a year old that RSD decided to park its ass in the middle of my life and slam the door in my face.

It was spring of last year and my husband Michael told me that he needed a new suitcase for all his traveling for work. After searching off and on for a couple of weeks, he still hadn’t purchased a new one (this one is too big, this one is too small, this one is too expensive, this one will fall apart too quickly…..on and on). So in hopes to end the search, our sons and I decided to help him find a new suitcase. Lo and behold we finally succeeded. In June, my parents came out from CA and stayed a couple of weeks and, as they always do, they put their suitcases in our master bedroom along the left wall. Just before they went home, Michael had to leave town and came home about one week later. It is customary for me to “air out” his suitcase when he gets home because his closed-up suitcase with both clean and dirty clothing usually ends up with that distinctive odor of only dirty clothing. So after he unpacked it, I moved it to where my parents’ suitcase had been, opened it up and sprayed some deodorizing spray in it. Not thinking more about it, I was doing laundry two days later and after emptying our dryer and walking into our bedroom, I walked right into the suitcase. Okay, “walked” isn’t the right word…..I literally slammed my left foot right into the side of the suitcase. My pinky toe received the brunt of the slam and I did the normal song and dance one does when this type of thing occurs. But being the kind of woman I am, I brushed it off as a bad stubbing of my toe, folded the laundry and went on my day. I remember I went to our community pool later that afternoon and saw my good friend Teresa there and I told her about it as I realized that the nice warm water wasn’t feeling especially nice on my foot. That night, I took a shower, gingerly put some lotion on my feet, put on some socks and went to bed. All night, I was aware that this toe and the entire left side of my left foot were talking to me, but I did my best to ignore it and tried to sleep.

The next morning, then, I was horrified to finally take off my socks and discover that my pinky toe and some of the left side of my foot was literally purple. I called my internist and explained what happened and we concluded that I must have broken my toe. Ice it, elevate it, take some ibuprofen, stay off it and call if I don’t feel better in a couple of days. I did just that, feeling completely foolish about the entire thing. Michael teased me for moving and airing out his suitcase, then decided it was a good idea to put it away in our walk-in closet. After all, you can’t have an idiot like me walking around in our bedroom with a suitcase on the floor; I might just do it again!

By that Friday, I was feeling even more foolish when I realized that instead of feeling better, my toe and foot felt much worse. I promptly phoned my internist again and she told me to come in for x-rays. Sure enough the damage was clear and it was possible that I even dislocated my toe. After a quick referral to an orthopedist that unfortunately couldn’t see me until Monday morning, I was sent home again to continue the ice/elevation/ibuprofen routine.

Monday morning couldn’t come soon enough and the x-rays were repeated. In his opinion, I didn’t dislocate my toe but I broke it in two places and he put me in a sandal-like soft boot. Yes, continue with the ice/elevation/ibuprofen routine. I continued to see him over the course of a few weeks and noticed that even though my toe was no longer purple, my ankle and foot were huge and I had intense burning coming from the pinky toe, the toe immediately next to it and the entire left side of my foot. As time went by, the burning and pain crossed to all my toes, to my ankle and was now shooting up my leg to my hip. It was like someone was lighting a firework from my toe to my hip and then it would go off. By now my breaks have healed, parts of my left foot were either numb or burning and the orthopedist is annoyed that I am having all this pain. Oh, I must not be doing the home exercises correctly or I’m not icing it enough (which was true because now my foot can’t stand the ice therapy anymore) or frankly am just bitching. Finally he gives me the name and phone number of a pain management specialist and tells me that if I don’t feel “better” after a month, to come back.

After realizing that this doctor wants me gone, gone, gone (and just maybe the door will hit my ass on the way out!), I agree with my mom (who’s an RN and an auto-immune sufferer herself) to see a neurologist. I call a girlfriend who is seeing a neurologist for her auto-immune disorder and make an appointment to get a second opinion. This lovely female neurologist is sympathetic, warm and frankly a bit horrified that not only was my foot not cast for the break, but that I hadn’t actually been directly referred to a neurologist when it was clear that not only did my nerve pain never go away, but only intensified as the weeks went by. She immediately puts me on some medication which makes me incredibly loopy and eventually conducts an EMG. After reviewing the results, she is hopeful that the foot surgeon next door can help me and sends the results of my EMG to her. My hope that a foot surgery will solve my problem, however, is dashed when she runs a nerve block test on my left leg and rather than feeling relief, my pain increases. She orders an MRI of my foot and tells me to bring the CD of the images to my next visit. After reviewing the images and discussing the case with her colleague, she tells me that she knows exactly what is wrong with me and surgery will not solve the problem. I am diagnosed with RSD. Stoically, I take the news and I am given the name and contact information of a pain management doctor who specializes in RSD. I am asked to give her the MRI CD and make an appointment immediately. I reach my car, shut the door and begin to sob. I phone Michael who is at work and he tells me that he will leave work and come home. I call my Mom and both of us cry. She stays on the line till I pull into my driveway and wait for Michael to get home. I feel like Hell has walked into my life and it wears a chain around my neck called RSD.