A personal update..

 I dont know all the in's and out's of the up coming healthcare bill.. I just pray that it will be better than what I and several of my friends have now. A friend with a pre-existing condition ( Breast cancer remission) pays $1200 a month for coverage with a $5000 deductible..
My companies health care provider ended my coverage and REQUIRED me to apply with Medicare after 24 months of my illness. I was shocked, they wanted to cut and run from me when I really needed them. The coverage I have now is comparable except for prescription coverage.. My prescriptions cost me over $1600 per month, or just shy of $20,000 per year, OUT OF MY POCKET....ridiculous huh? Thats not the best of it.. My doc has added a new med she wants me to try --its a newer injectable that will cost me $1400 per month...I can give it a try for a few months..that about it..( at this point I want to try anything I can)- I cant leave any stone unturned..

Speaking of ridiculous, my continued diagnosis of Inflammatory Arthritis, Fibromyalgia and Chronic Fatigue is VERY FRUSTRATING.I am coming up on 4 years since this nightmare started. I take over $3000 a month in medicine, with that amount of money you would think I should be able to walk on water..or at least feel like I could...its not working out that way unfortunately..

The Chronic Fatigue and Fibromyalgia absolutely kick my ass. I am a human barometer when it comes to the Fibromyalgia- thats one of the best descriptors I can offer.. I dont know exactly what it is,  but weather changes just make me miserable.. You ask me what they are, I cant tell you everything, but I sure have somewhat of an idea..Moisture in the area, pressure changes, High or Low, Hi heat, Hi humidity and fronts of any kind- including vorts moving through at very high levels of the atmosphere.. In the Winter- cold air definately adds to my misery.

My fatigue has been like nothing I have ever experienced over the past 6-8 months..it seems to be progressing instead of getting better.I dont have energy!! I dont sleep well- I go to bed early and it depends on how I sleep that determines when I wake up.. some days it is 3AM when I wake up, some days it is 8 or 9.. The crazy part is I do not know what kind of a day I am going to have for a couple of hours after I wake up..I might have slept for 9 hours and 2 hours after getting up I might be miserably fatigued..crazy huh? Some days I might have energy until the afternoon if I am lucky, but most of the time I struggle..
Along with the incredible fatigue I find my muscles, tendons and joints sore and achy most all the time...some days worse than other.. the bad weather days add to the incredible soreness.
The flu-like feeling I have is the worst- I feel like I have the flu- I ache so bad and all I can do is stay in bed..

My Drs want me to do as much as I can.. so I try and do things around the house- or go to lunch with friends or participate in a KEC meeting or support group .. the problem with that is when I do something.. I PAY FOR IT.. I become very very sore a day or so later and it takes me a while to recover...which seems to be harder and harder.

I also experience "FLARES"-- they come on without warning and last anywhere from 2-3 days to 10-14 days, which has been the longest one I have experienced. The flares are where I feel flu-like the entire time.. I am just wiped out and it takes me at least as much time as I was down or more to recover and feel somewhat decent..another thing that DRIVES me crazy is what they call "the fog".. I seem to have that sporadically..there are days where I cannot remember things or concentrate well even when I am in mid sentence- or I forget things.. For those who know me well.. thats NOT me.. never has been.. it drives me NUTS.. so some days I feel my intelligence level is not close to what I am capable of.... also another think I deal with frequently is mood swings..just ask my family, and yes some of you, my friends.. I try but I seem to not be able to control any of these things.. so please be patient with me...I need all the friends I canget to help me through this...

Good days are so far apart these days.. I used to have them more often.. The last few months I haven't been as fortunate..

I continue to gain weight - for many reasons apparently--and no, it not because I sit and eat bon bons and watch soap operas- like some early on Drs  have accused me of -lol- Weight gain is caused by several factors I have been told, including the meds I take, as well as the etiology of the Chronic fatigue syndrome from many of the articles I have been reading and what I am being told by my new experts it just happens..

I really do appreciate all of the well wishes I get from all my friends.. I am sorry if some days it might seem like I am bitchy or moody..

I have tried everything I can to make me feel better, sometimes 2-3 times, just to see if it works, or I missed something.. to this point I have had no real successes..

Thanks again for checking out my blog...its something I enjoy doing..its been a while since I did one.. just haven't felt like putting one together- after several messages lately asking how I am doing I thought I would let all my friends know..

Hope all is well in your lives...thanks again for all the positive thoughts and prayers..continue to include me!

Jon