Sorry I've Been MIA

Wow time flies by when you are in a Lupie fog! To do a brief catch up....I was denied on my first round of Disability, really no surprise. They said although I am no longer able to do my profession of nursing, due to my age there should be something else I can do to support myself....um hello! I couldn't support myself and 3 children on what I was making as a nurse by myself, I certainly am not going to be able to find an employer that will pay me a lot of money, allow me to work no more than 5 hours a day, come to work when I am able, sit down/stand up/walk around/lay down when needed. So frustrating! The whole process of filing all those forms is really depressing! I have tried to stay positive through the last 6 years and to list everything on paper that is "wrong" with you is a drag. So since June I have been in and out of a funk. Lots of flares....headaches...pain and lots of changes going on.

The girls and I are moving to another place in our town in 2 weeks. It has really taken a toll on me physically and emotionally. Our family is separated right now for awhile until after the school year ends and we can be together again. Lots of sleepless nights, stress & drama here lately.

My DH and I went to a local Lupus support group meeting yesterday and they had an attorney speak about filing for disability and the difficulties of it with Lupus. He was full of important information and I have decided to use him to fight the next step with SS Disability. I have to go file an appeal tomorrow and make an appt with his office and then we will see what is next.

There was another woman, around my age, there at the meeting that is having problems filing as well. She is a new mom and was really discouraged about feeling like she is "cheating" her child out of things b/c she has Lupus. I remember just a few years ago thinking the same thing, and at times it sneaks up on me again, but for the most part I have tried to explain to each of my girls. My little 5yr is so sweet....her teacher asked her if her Mommy (me) was going to be able to come on a field trip with the class and she said, "Only if it's not in the sun and if she feeling good b/c my Mommy has Lupus". She is my little advocate! Gotta love her! My DD#2 has some medical issues of her own and we have just recently been able to get her stable in her own issues. She can be supportive at times but as with most kids her age (11yr) she is worried about herself. My oldest (almost 16yr) is good to help whenever I need her to, if I can get her out of her room! She is going through a phase right now and I try to not rely on her too much, just when needed.

I have recently lost my health insurance and as many people with Lupus know, I am now "un-insurable"! I have to be without insurance for 6month before I can apply for the new medical program that my state has. I have to qualify for it, thankfully we just make it with my DH income! Until than I was able to get signed up on a free prescription discount plan. The problem is that only 2 of my 6+ prescriptions are on it! So now I have to go sit with my MD and try and change meds to ones that are covered, oh joy! I have been without my supplements, muscle relaxers and Plaquenil for about a month now and it's really kicking my butt!

So there's the update, I am sick & tired and walking around boxes for the next 2 weeks! LOL....I have to find some humor in this or else I will cry!