I don't even know where to begin as I start to write today all I know is I need to let some things out and where better to go than to the whole world. Once again I need to write, I am not here to complain but to process what is going on with my illness and to hopefully help someone else realize they are not alone if they are having the same feelings or dealing with chronic illness issues. It is such a broad spectrum to cover when you are dealing with so much, not only physically but emotionally.
A few months ago I thought I had found a treatment plan that was going to work for me. In the beginning stages it did help, for the first few weeks I felt a shift and thought to myself, this may be it. Ever since my Osteopathic Manipulation Doc left town I have been a mess, so trying something new and different seemed like the right thing to do at the time for pain relief. With my migraines getting out of control I felt I had nothing to lose. The longer this treatment went on my migraines stayed the same in frequency, but increased in intensity. I tried to talk to the doc about cutting back on some of the work he was doing in my neck area in hopes it would decrease the intensity of the migraine, it seemed it did help. I started massage therapy on my neck and upper body which seemed to be another answer, until yesterday. I went in and after I talked to the doc he said he would just work on my hip and the massage therapist would work on my neck. I had a treatment and he moved up my back to my upper back towards the neck and did a few things. As I laid there I felt the pain coming back and as the day progressed I was back in the place I didn't not want to go back to. I went to bed not feeling well and in much more pain than usual. Then, at four am, bam, migraine. I am still suffering somewhat but pushing myself to do things. It will get better as the days goes on, it always does.
The point of this blog is more of a question of sorts, along with a point. I try in my head to deal with all the aspects of being ill. Just when I think I am doing well, it happens, something shifts. The something that I can never figure out. Maybe I tripped on a step, or I did to much physically. I know, for most people these little things are not a big deal, but for me they can send me into inflammation mode. My inflammation is not specific. Lets say I tripped or twist my ankle, for me it sets up a chain reaction in my body and not only will my ankle swell but my neck may start to hurt or my hip will become painful, on and on and all at the same time. The inflammation is not one-spot specific as most people would be, it is systematic, which means throughout my whole body. My vision becomes messed up, etc. I do not understand why some docs, even people, cannot understand that? I explain my "situation," but I seem to get the deer in the headlights look like I have no idea what I am talking about and that this just cannot be true. Well, I will tell you I know my body better than anyone and I can tell you it is true. It is funny because I can tell tell what will happen just by looking at something, as crazy as it sounds. I see a bike it looks like days of pain if I would even try to ride it. I see a pool, I see weak muscles and not enough muscle power to climb the ladder to get out. I am the expert here. I live it. It seems I have had only a few docs who get it, my two specialist and my past OMM doctor. Dr. Hayes. He could look at me, just look at me, and know. He could touch a muscle and know where I was in pain and how to relieve it. Do doctors/people really think the chronically ill would make this crap up? Seriously, if I had to make this up it would be a full time job trying to do it. To me all of this is a like a sporting event where everything changes from minute to minute. I never know what the outcome is going to be. I need people on my team. I need people to encourage me, but most of all I need people to listen to me and understand this is what happens. Just because everyone else has this reaction, mine is going to be totally different and off the wall. Trust me, I know! I think for doctors it is some kind of ego trip. I can help anyone but when they can't help you they take it personal, when it isn't personal at all. It is like medications, what works for one doesn't work for the other. Simple. I live in my body 24/7, I know!
I am not a quitter, I never have been, but when a person is chronically ill you must become you learn how to be your own coach in the game, the game of illness. I tried this new treatment for a few months and I know this treatment is not in the cards for me. It is okay. It isn't anybody's fault, it just is not meant to be. It is painful emotionally to find out what works for the rest of the world, doesn't work for me. You see, every time I try something new I have a glimmer hope. This might be it. The thought or idea of "just what I need," excites me to some degree but it also pulls me back at the same time. I still have hope. It is painful and emotional when I get excited only to be knocked down once again. It is hard when there is even a little relief and I can see a little light shinning at the end of the tunnel only to be sucked back into the tunnel as the pain comes back and drags me back down. I may be down, hurt, sad, but not for long. I will fight this until the right treatment comes along and I will not stop until I find it. I know it is there somewhere waiting for me. Truthfully I am waiting for Dr. Hayes to come back but until then, or if he ever does, I will fight! It will all be okay, really. What other choice do I/you have? We all have to keep that light at the end of the tunnel in sight and realize someday WE WILL GET THERE!
God Bless!
Dianne
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