Update 7/15

I apologize for not updating sooner. I had an appointment with a mito specialist from Children's hospital, and she added a few new supplements. Well not really new but ones that I had stopped. Co Q 10, I had stopped because it gave me a rash, and B Complex. I had stopped the b's due to money. But they did help and I have started taking them again. (The b's themselves are not that expensive...but when your buying a lot of them it is!) So I also got a list of things that I have not done yet.

- Blood work - OK I got this done right away, but only because I had to get it done before my IV therapy. LOL
- Cardiologist - I need one. I need to have a work up once a year. An Echo specifically.
- Ophthalmologist -I need to start seeing one of these too. I have a pretty bad vitamin A deficiency right now, I wear sun glasses any time I'm out and since my eyes are not adjusting to the light difference I don't take them off!
- Physical therapy - They've actually suggested this before but I didn't have health insurance. Now that I do I might be able to get a few appointments in...but Medicare only covers so much. They also suggested aqua therapy. Man I miss not having a pool!
- Swallow study - I had one done last year, but I have started to have problems swallowing.

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631
Mito symptom listing

I have to go back, of course; with all of these things. I'm still getting my words mixed up. You know that moment when you forget the word you want to say...but its on the tip of your tongue? That happens to me all of the time. Maybe 6 times a day on average. So that is a concern.

I still have good days and bad, since getting a different dose of the Co Q 10 and taking my B complex every day I've had more energy on a good day lately. Now if I could just get rid of those days where I wake up and can barely move!
I'm not sure that I have mentioned it on her but I started Protonix, and it is amazing. It really helps! I still take enzymes of course, 6 - 8 with meals; but the Protonix really helps with my GERD. I have been doing letterboxing with my husband and daughter so that is getting me out of the house! Plus I have a friend who has a "games day" at her house every now and then, and we play D & D at my house every week. I think that getting outside and participating in social gatherings with friends and/or family is helpful for those of us with an illness that restricts activities. For me it really helps my mood. It's easy for me to feel down, so the little things are what keep me in a happy mood.

A fighter.

So a few weeks ago I received my notice in the mail. I am officially disabled, according to Social Security Disability. It's been a tough 4 1/2 years, for those who know me the one thing I hate is that admitting I am sick. I'm not able to do the things I used to do, and I'm not getting better. I have been using this blog as practice; because we all know how much easier it is to type your feelings than to voice them.

So I'm still waiting for all of the specifics to get it, but the waiting for a decision is over. And I am happy. I'm happy that I no longer have to "prove" that I am sick and unable to work; happy that I have finally been approved and it is one thing that my family and I no longer have to worry about; happy that I can apply for Medicare. I've got this small part, negligible really, that is not happy. I have a great life and I am so blessed but I want more. I want to be able to walk around without having muscle cramps or pain in my joints. I want to be able to work, I really do. To support my family would be great; I enjoyed working while I was doing it. I wish that I could make it through every day without a nap, to drive the car where ever I want without concern about fatigue and pain.

I have learned the hard way that life is not what you expect it, but it is what you make it. I try to spend my days being thankful for what I do have. Which is a lot compared to some others out there. I will play the cards I’ve been dealt the best way I can, and I hope that people around me will notice my fight instead of my struggles.

http://www.youtube.com/watch?v=bxV-OOIamyk


"Give 'em hell, turn their heads
Gonna live life 'til we're dead
Give me scars, give me pain
Then they'll say to me, say to me, say to me

There goes a fighter, there goes a fighter
Here comes a fighter
That's what they'll say to me, say to me, say to me
This one's a fighter"


I've had people say to me, "I'm not sure I could deal with what you have to deal with". I'm not special, I think we all have a little fight in us. You just won't see yours until you need it. So don't sell yourself short.


"Give 'em hell, turn their heads, Gonna live life 'til we're dead"




(Lyrics from Gym Class Heroes song, Fighter.)