January 4, 2013

Hello, Today is a better day. I am not so darn tired as I have been for the past week. I still am taking it easy though as I feel nauseated for three days now and need to be careful because of the autoimmune suppressants I am taking.

Christmas and New Year is coming to an end. Although I will have my Christmas decorations up for a few weeks for sure before I take them down. I love the peaceful look that they have. It makes me feel good to see them at night, or day. Anybody who knows me, knows that I have them up right after Halloween. Many reasons I do this. Too many years in retail that taught me to do everything early and then too many sick family members and never knowing what may happen right before the Holidays so you prepare ahead. and now because of my energy level, it is not the same, getting everything up in a day or two. Now it takes me a week or two so I have to keep that in mind too. I do not think no matter how many years I have not worked I will still be the same person.

Legs are sore and hurt this afternoon. I have them up on the recliner, but still ache. I have noticed the last few days that it is harder to get up from a kneeling position then it has been for a while. I realize this is from a little over doing. to say the least. lol.

I am frustrated today because I have a friend on the Hashimoto's Encephalitis site in facebook that has got her notice for her disability hearing (her 2nd one) she said they have two expert witnesses that are medical doctors that are there to testify for the state that she does not deserve this. I am so angry at this. This disease is so rare, and is so misunderstood, how can they have any expert medical doctors testify against her. There are no expert specialists in H.E. So there is no way a reg doctor can know enough about her condition. The other thing is that all H.E. patients are different. Some are able to return to work to some extent. But this poor woman has tried several times and each time went into a bad flare. She can not remember, or speak correctly, extreme fatigue etc. She is like I am in so many ways. Sometimes it is hard to describe it to someone else because you learn to live with it and it is second nature to hurt, can not concatenate, fatigue,
  etc. I really hope the book we are putting together will help give creditability to the disease. With all the patient stories in one place, with treatments and physical complaints and downfalls. This should I think, help the disability people and the doctors along with the patients with H.E.

I personally know I can not work. I was told to stop working or it could really hurt me in fact I believe the word was it could kill me. So it left me with no choice for which was a good way to tell me to quit. I would have kept trying until I did kill myself because we needed to pay our bills, but the doctor took it out of my hands. Sometimes I wake up and think wow I think I can do something today, bu