Monday, December 21, 2009


Boy, the last few days I have really been struggling. Thursday night my sleep was disrupted and I really went downhill from there. Friday and Saturday were awful. Absolutely wiped out. One of my friends was having a Christmas party on saturday evening. I really wanted to be able to go and visit. I hardly ever get to see my friends (some I havent seen in 2+years), and I was so looking forward to getting to spend time with them. But unfortunately I was just too sick to to be able to go. Maybe next year.

I ended on the couch with my dog and watched ELF with Will Ferrell. It is so good. I think tonight I might do Christmas Vacation with Chevy Chase- can't go wrong there! Anyway I am feeling a bit better today, still really crappy but not totally laid out like a couple of days ago. I hope I can have my energy up enough to be able to visit some family for Christmas. Thats my goal for this week, I just hope to be able to have a somewhat "normal" christmas.

Best wishes everybody for a happy holiday season!

Thursday, December 17, 2009

Social Security CF

So, Ive been trying to get on Social Security for almost a year now. I spent an hour or two on the phone with them this morning trying to find out any information on where my appeals are at. I finally got through to someone and they said they should have an answer by February. February. Seriously, why does everything with these people take 6 months? how the hell am i supposed to make it another 3 months with no income?

I have doctors (plural) stating I cant work and should be on Social Security Disability. I need help. Those of us with CFS/ME/Fibromyalgia don't fit the governments tidy little metrics and all we can do is fight. I am probably one more step away from winning benefits I PAID INTO for the last 15 years. Good thing the Govt wants to run healthcare. They are completely inept at what they do already, hey lets give them more! schmucks. Most dangerous words you'll ever hear-"I'm from the Government and I'm here to help!"

Sorry, rant over. I'll try to stay off politics in this blog.

Im feeling pretty decent today. Upset with SS, but physically not a bad day. Walked the dogs around the block and its a pretty nice day today. Wish I could go ride my bikes like I used to. someday, someday.

Wednesday, December 16, 2009

My background...

Depending on which Dr you ask I have either CFIDS, ME, Fibromyalgia, and one suspected Atypical MS

When it began, it started as though I had a terrible virus. No one could tell me what it was though. Basic blood tests were fairly normal. Blood counts were low here and there and blood pressure was low. I felt dizzy alot. I passed out a few times. It felt as though I didnt have enough blood in my body. I was hyper sensitive to light, sound and overall stimulation. I became so weak I couldnt walk unassisted. This began a battle with a severe debilitating fatigue that I still battle.

I had a fever for a while but its low (100 or so). I had swollen lymph nodes and fairly severe gastric distress. Everything i ate or drank either came back up or immediately passed through.

My hands became dumb. Numbness in my fingers, and i became clumsy at times unable to grasp and manipulate objects as one should. That led to one dr suspecting and MS connection, but that eventually subsided now i have only minor neurological complaints.
This was a terrible virus/sickness that I never really recovered from.

How i feel now-

I have to make sure i get my sleep. If my sleep is disturbed for any reason I am very fatigued and sore the next day. The best way i can describe it is that it feels like a hangover. When I rest completely, I feel as though my systems are stabilising and recuperating. My energy level rises, the fatigue lifts, the muscle stiffness and pain abates and I feel stronger, more alert.

As soon as I start doing some physical exercise/activity, my muscles have no power- I feel as if the muscle stiffness I would experience after running a six hour marathon comes on in minutes. I feel burning in my muscles. I get nauseous, I feel flooded with adrenaline. I get shaky, weak, sometimes a crushing headache. I can become very light and sound sensitive. Rapid or flashing lights trigger headache and also nausea.Later when I rest again, I feel poisoned, like having the flu or a hangover. My muscles now ache and hurt. I am left with a feeling of groginess and malaise that lasts for days. I experience this to a lesser extent with mental activity. The more I work, the less able I am to concentrate, the more I struggle to think.

I am very sensitive toxins. Sugar, chemicals, perfumes, smoke, alcohol and certain foods can trigger an onset of symptoms. Also I am very sensitive to hot and cold.

I have had bowel problems since the onset of symptoms 2 years ago. It has been diagnosed as IBS or Leaky Gut. I am take lots of probiotics and watch my diet very closely and this has helped some. I still have persistent diarrhea. Pain, tenesmus, and blood with stool only happens once or twice a week now, when it used to be daily. Tested negative for Crohn's.

I have had tests show low for magnesium, potassium, thyroid, testosterone, vitamin b12, vitamin d. HIV Negative, T-cell count was 350. They said that it was low and probably caused by a virus, not to worry.

I am currently taking no medications. Doctors gave me Lyrica, pristiq, savella, celexa, flexeril, rozerem, ultram. Nothing worked and many in fact made my symptoms worse. I am currently only eating a whole foods diet and taking supplements and this has been the only thing that has helped me. I take lots of amino acids- glutamine,carnitine, etc. and they do help.