Trying to maintain

I have been fighting the idea of doing this for some time now, I don't try to be the 'Woe is me' guy. This blog is not meant to be my pity party, I am not looking for the "Aw's", "poor baby's" or any other kind of sympathy, I have finally gotten to a point that I feel I have to get this out and this seemed like the best way for me to get it done. If you don't like what you read, please save yourself the trouble of attempting to start an argument or make this into whatever you want it to be. This is strictly for me to try to get some burden off of my chest and see if it makes tomorrow just a little bit easier to get through.  

I have worked in the medical field for just over 7 years, I have cared for people in every stage of life. Many times, I have heard people tell me that they rated their pain at 10/10, which, according to the chart, means that they are unconscious due to the level of pain they are in. I doubted many, especially those that I saw screwing around in their rooms, or doing the things that a person that claims to be in that much pain couldn't possibly do. Now, here I am, sitting on my couch, typing this out with my foot throbbing and hoping the pain and sleep meds take effect sometime soon. It really sucks to be on the opposite side of this. I used to look at some people, convinced they were full of crap, but bit my tongue and took care of them. I'm sure there were times when some of them could tell I didn't believe that they were in pain, now I feel like crap because they may have been able to wear a better mask and hide some of their pain better than I was able to comprehend. I knew that most people I encountered were legitimately hurting, but some were (in my eyes, at least) obviously milking the system.

It's hard being the guy that wants to do everything he sees other fathers doing with their kids, or the guy riding a bike, walking a dog or enjoying the time hanging out with his wife and friends, but can't because he knows that, even if it doesn't hurt too terribly bad right now, everything that he does will be the reason he is even more miserable than usual later. When he does suck it up and meet up with friends or do the activities he misses, he feels he has to put on a mask and try to be something he once was, in hopes of his friends not getting to the point that they would rather not see him because he is always negative or complaining about his pain, and he doesn't want their fun to be ruined.

Going to a restaurant and having to request a normal height table because the high tops cause his legs to dangle, causing blood to pool in his foot and bring unimaginable pain when he steps down. When his son or daughter ask him how to do a certain move in sports and he can't show them because he can't get push off of his foot well enough to perform the move right. When his daughter asks him to dance with her and there is no way he can perform the moves because they require too much use of the foot. When his daughter is near tears because her father has offered to stand next to her and help her keep the steps right for a relative dance because her partner, my lovely wife Rach, isn't there but she is too embarrassed to have him next to her, so after he has told her that she doesn't have to have him with her and leaves, she chooses to have her mother's BF dance with her instead. When his son smiles as he gets an idea for a fun activity and then the smile vanishes because he realizes that his dad can't participate. These, among many others, are the things that this person has had to come to terms with over the course of a year as this "syndrome" has taken its toll on him and his family. I no longer doubt the claims of those that say they suffer from chronic pain, I see the doubt on people's faces as I traverse parking lots, walk in stores or work through my day, it sucks feeling like I have to reassure myself that my pain is real, knowing that those who doubt me would give all their possessions to rid themselves of this condition if they were forced to live through one day with it.

As this whole thing began to unravel, I slowly started seeing the activities that I enjoy become more and more limited. Before I was told my diagnosis, I was sent to primary care, podiatry and ortho, all with no results. I was so bad at times that I was using the electric carts at grocery stores. I walked with a cane for nearly a year. Once I was finally told what my diagnosis is, I was able to get medication that would hopefully pinpoint the symptoms and enable me to get rid of my cane, but I have had to submit and resume the use of the cane again after almost four months without. I forced myself to make efforts to perform tasks that I had not dared since the onset of this constant pain. The pain level didn't get much more tolerable, but there are times that I can stand like I actually have two feet and not think about it. I still had days that I would have given an eye to have my cane to help me get through the day at work, I happened to have one of those days not too long ago. It's amazing how much of a difference a medication can make. I was almost positive that Tramadol had lost its effect on me me. I ran out on a Sunday night, Tuesday at work I was ready to shut the door to my room and smash everything around me, just in hopes of hiding the pain, if only for a few minutes, that day, I discovered the value of the Tramadol. The constant burning, stabbing, tingling, numbness and swelling in my foot has made it nearly impossible to focus on most any task.

My memory is the worst it has ever been, minus the week I was jumped, aside from what I have been told, I still don't remember the exact happenings of that week. I don't like to admit this, especially because since I met my brother, he has known me to be his safe for information that he needed to have kept safe and remembered at any point. I saw my brother and his family for his birthday party back in October, I was introduced to his mother's friend Dave, and as soon as he said his name, I forgot it, to be completely honest, I forgot it as I was typing this, my lovely bride was here to remind me.
I am just lucky that I work for one of the most patient doctors anyone will ever meet, the stupid things that I forget throughout the day, would be unacceptable to almost any other doctor. The number one reason that I have a job in a clinic is to get the vital signs of those coming to see him, I am sure he would say it has only happened maybe once or twice, but I am sure that I have done it more than a handful of times. I have to interrupt many times throughout the day to ask him something about the person he is seeing or about an order he asked me to perform for someone else.

Sitting here in my living room, looking at my wife, I can't help but remember the spring nights that we spent trying to get the timing and steps of our dance down for our upcoming wedding. She has asked me at times if we will ever dance again, looking into her eyes, I can do nothing but attempt to bring her in to my arms, hoping she thinks I am trying to console her, while really trying to hide my shame that I feel knowing that she deserves something much better than a 32 year old husband that can't perform many tasks around the house, and can't take her into his arms and dance with her throughout the night, like we did in May of 2011.  It seems so long ago, all of the changes we have been through have been so taxing on us both, sadly though, I feel like she has taken the largest portion of this burden upon herself.

I have been lucky to have kids and coworkers that are beginning to understand the limitations I now have. The kids went out and raked the leaves, my son has mowed the lawn since last summer, my daughter is eager to help in any way she can. I have had coworkers bring patients to me, to save me from having to walk to the front to get them. I still have a hard time asking for and receiving help, but as the pain continues to increase I have had to learn to be more accepting of the help and more up front about my limitations. 

When I wake up multiple times a night, I sit and wish it was just a dream and I will really wake up to a life of normalcy. No matter how many times I tell myself that it will get better, the sleepless nights and pain filled days are a brisk reminder that this is reality and it's here to stay. I keep thinking about a comment my sister said about my "angry white boy music", she is right, I have always listened to that kind of music, especially over this last year, I don't listen to much other than that type of music. I have grown to be an angry person, I have felt that it is somewhat normal for a person to be more than angry about the situation I am in. The statement "you still have your health" or "it could be worse", only serve to bring about even more anger. I don't want someone that isn't in my shoes, experiencing the feelings I have daily, to tell me that my pain is not worth getting upset about. If you have the nerve to tell a person that they are not in that much pain, yet you have never had to live one minute of your life like they do, please keep those comments to yourself, they really only serve to piss the person off and inspire them to create a distance with you. Oh, and the childish "gimpy. hopalong, limpy" and other comments, could get you much more of a reaction than you expect, especially if they are having a day like some I've had recently.
At my most recent appointment with my PCP, Rach informed him that she has noticed a vast difference in the size of my calf muscles. My right leg has remained the same or maybe a little bigger, whereas my left has began to atrophy. Not having noticed this before, it was a bit of a shock, but it did explain why my left sock was always falling down more than the right. While sitting with Dr. Ehlers, we discussed the treatment plan and possible outcomes of each treatment discussed. I thought I knew that this was a lifelong issue that I would have to deal with, but when he cut the BS, looked me in the eye and stated that RSD will not simply go away and I'll have it the rest of my life, I just about lost it. Here I am, about to turn 33 and I am told that there is pretty much no way I will ever be able to do the things I have missed out on throughout the progression of this syndrome's hold on me.

People try to tell me that I shouldn't let my pain rule my life, I don't waste my time trying to explain to them that I have tried nearly every sort of distraction, suppression and medical device/practice/exercise that has been mentioned, all to know avail. Some might make the pain more tolerable than going without, but most of the time taken to perform such activities is longer than the relief brought by them. I have been lucky to have a team of physicians who are doing as much research as Rach has been, to try to find a more effective, longer lasting treatment or therapy. I have been receiving nerve block injections in my knee since June. The meds used are Ropivacaine, epinephrine and Precedex, when they fully surround the Saphinous and Popliteal nerves just above the knee, I get at least 2 days relief, sometimes up to 4; sometimes they are unsuccessful and the only thing I get out of having endured the joy of the injections is numbness from the knee to just above the ankle.

So, this is my blog, my place to spill what comes to mind. Please, feel free to leave comments, I do hope to post treatments and results as they come. If you know anyone with RSD or CRPS, let them know that this exists, maybe they might find some information useful.

Thanks

Jim

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