I have come to hate the word idiopathic over the last two years. Idiopathic is the word doctors use when they can't find the causitive agent of your illness/disease. I never knew one could be so miserable and be in such horrific pain. It all started in June of 04 when I was on a business trip. I got flu-like symptoms and when I returned home the doctors told me I needed my gallbladder out. Three months later, I developed gastroparesis and lost 45 pounds. It didn't end there, shortly I developed constant muscle fasciculations all over my body, miserable lower back pain, tingling in my feet and deep aching pain in my legs. Two years later, I still have all of those symptoms minus the stomach issues but I have also aquired chronic daily headaches, myofacial pain and high intercranial pressure. In a nutshell, there are too many symptoms for one human to endure. There are days that I want to die and give up and then there are days I have hope. The doctors know that I have an autonomic neuropathy but they don't know why. They also know I have a suite of symptoms that don't fit with the diagnosis and have determined I am a puzzle wrapped up in a mystery. I have had just about every test in the medical world and I am coming to the conclusion that there isn't anything the medical community can offer. They just prescribe drug after drug but nothing cures the disease. They say hopefully it will resolve but maybe it won't. At the end of the day, all I have is faith that God still heals diseases. I desparately want my life back. I will live it differently from what I have been through. I just hope I get the opportunity to prove it. I watch everyone elses life going on and my life is on hold. I am so sad but mostly just sick of feeling so terrible. I am sick of people saying "at least you don't have cancer, etc." that doesn't make me feel any better. If I hear that one more time, I am going to go postal. Obviously, I am so grateful I don't have cancer but I do have a dreaded illness that is not well understood in the medical community with no certainty with what my odds truly are. I have learned how important family is during this awful time. My parents have really been there for me. I also have some special friends that I know I can call at any time. I have also learned that some loved ones and friends can't deal with illness so they detach and don't know how to be for me. I find myself wishing my life would have turned out differently. I wish I would have made other choices. I wish I had someone who could really be there for me and know when to hug and when to offer that word of encouragement. I feel so alone most of the time. Illness can give you a deep depression that you never even knew you were capable of. I have taken notes and have reassessed my life. I don't like what I am seeing or who I am seeing in it. I hope that someday I will have the opportunity to help others through illness. I think I could offer that which I desire so much from others and can't get because they haven't walked in my shoes.
4 comments:
Did you get better yet?
Your symptoms make sense to me as an acupuncture student. I'd be curious to hear your case.
No, I still have a small fiber neuropathy and constant muscle twitching all over my body. It has been going on for 6 years. I tried a few acupuncture sessions for headaches a few years back.
Contact this naturopath
Mikhael Adams, B.Sc.,N.D.
http://www.auricularmedicine.ca/aboutUs/index.html
He practices Auricular Medicine - I have been treated by him for immune related disease (Crohns) and I believe he can really help you.
I found your blog entry while searching the internet for ways to deal with having an illness that doctors can't diagnose. When I read your words they hit me personally. I'm a year into this and feeling frustrated and depressed as well. My symptoms are a bit different but the unknown aspect is the same. I quickly lost 40 lbs and began feeling fluish last year. Fevers, night sweats, intense abdominal pain, and fatigue everyday. I had my first liver resection to remove a mass in October, by November I had a new larger mass appear. Second wedge resection in January. Lymph nodes swell but don't stay swollen, white blood cells go up and down....I've had every test known to man and still nothing shows. Obviously something is going on but I can't get any answers. I'm a logical person and too feel that if doctors don't know what it is then how do they know the mechanism of the illness. For what it's worth I wanted to thank you for your blog entry because the isolation of having something like this is terrible. I hope you find a diagnosis and I hope you get your life back, I know how it feels to desperately want that.
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