Fibro - my life
by Karen Feicht
Well, this has been an interesting life for the past 3-1/2 years. I have been through many tests and doctors. I am at a loss of where to start.
My biggest fear has been that they were missing something easy - like drinking water on Tuesday was the cause of the problem. I "pushed" doctors to hear my case and ended up alienating them, with the result that this is all in my head. Or at least, that is how I was made to feel. When they voice doubt, I tell them no one has more interest in me getting better than me, but they are reluctant to hear this.
I had one doctor tell me he was going to test the trigger points and would put the same pressure on every spot he tested. I am no dummy; he used different amounts of pressure depending on where he was testing. He told me I tested positive in almost all the points for FM, and on some points that were not related to FM but that it did not matter. He then told me that since he had made a diagnosis of FM that no doctor could treat me from there on out, with a satisfied smirk on his face. I wanted to scream and ask what was the point of doing any of this. The next time I encountered this same doctor, in walk-in, he slammed my file shut and yelled that he would not treat me (I would not agree to go back on Lyrica - had a very bad reaction to this med that ended in the ER).
One specialist that I was referred to did not believe me at all. His prescription was to get a dog. In his mind, all I needed was to get more exercise and life would be wonderful. He wanted to know why I "wanted to be sick." Hello - who WANTS to be sick???? He did not hear me when I said that making supper left me in excruciating pain each and every day. Where did he get his degree??? (We got a dog - no change. I really do try everything!)
I saw a neurologist early on who didn't believe anything I said and asked why I had even been referred to him in the first place. When I told him of one of my symptoms I had been experiencing, and that I did not know if it was of importance to him or not, his reply was that it probably was important, but he didn't know what the hell it meant, then laughed.
I had one fabulous doctor who listened, believed me, and tried everything within his scope of practice to help me. He has gone back to school to move on to another field of practice.
Now I am left with doctors that take on patients by interview (that means they will interview you to see if they will agree to accept you as a patient - shouldn't
it be the other way around???).
I was referred to a rheumatologist by the fabulous doctor I mentioned before, but I was told the waiting list is 2+ years before they would even get to my name. Still waiting....
I have been prescribed so many different medications that I have a cupboard full of bottles that have a few pills missing. I have reacted to each and every one of them. I am not looking for the magic pill to make it all better, but I tried everything that they thought would improve my life. I work full time and need to be capable and functioning at work, so I believed that these meds might give me some quality of life. I miss a fair amount of work due to the pain (days when I cannot even get dressed, let alone try to type or perform every day tasks). Luckily, I have a very understanding employer, but I still wonder how long this can go on.
I am so tired of being exhausted and in constant pain. I feel guilty each and every day when I cannot do something normal, but keep smiling for everyone around me. I started a list of symptoms and quit after a full page. At least I have the info if I ever do find a doctor.
I am a "life is what you make it" kind of person and refuse to give in to this condition. I live life to the fullest--at least, what I am capable of on any given day--and do everything I can to keep my family going. It breaks my heart when I go to my daughter's volleyball tournament, and she notices I am hurting/can hardly walk at the end just from sitting on those nasty bleachers!
My kids hang around the kitchen to open jars and take over when I cannot continue with meal preparation. The bonus - I have more time with my kids!!! (I always look for the positive in every situation.) I hate having to ask them for help, but they are so understanding. Does that mean they should have to be? I think not. I do not want their memories of their mom being someone that needed assistance from them.
Having doctors that do not believe you only adds to the doubt that your spouse may have. After all, if the so-called experts don't believe you, aren't you really making a mountain out of a molehill? That said, my husband has been very understanding, but there are times when doubt can enter into the equation. Can't blame him really, and it is very difficult to understand when you "don't look sick" as so many people say.
Thanks for letting me say my piece. It helps to have a chance to get it off my chest and makes me feel better. Life is what you make it, and I keep smiling through it all. My motto is Dream, laugh, love, live. Keep smiling and all is good.