LIVING Post and pictures at the end.
I thought I would update you all about my health and what is going on in my life. I've gotten away from posting specifically about my health only because I don't want this blog to be taken over by that. I don't want my life to be taken over by my health issues. I want to LIVE and I want to document the living part more than the health struggles.
For those of you who are new and may not know what I am talking about I will try to fill you in quickly. If you are not new you may skip the green part. :)
The last few years I have had periods were I would lose all feeling in my hands and feet and couldn't do small tasks such as button a shirt. It usually would not last for more than a week. We didn't and don't have insurance so I just let it pass. Then in April of this year after losing about 40 pounds in 2 months it started to happen more frequently and I would be in severe pain some days. It finally got to the point where I had no feeling in my legs, could not walk and began to have seizures. I went to the ER and then was admitted to the hospital then transferred to another hospital. They could find nothing to explain what was happening. They final sent me home with no answers. I couldn't walk for months or do anything. I found a nero doctor that has put me on a lot of different meds that seem to be working but there is still no diagnosis.
I haven't had to use buddy (the walker) or speedy (the wheel chair) in quite a while. I have about one seizure a week now. I have always had them at home, thank God and never in front of my children.
I have been helping at Roo's school. I work as a teachers aide in the preschool class and I love it. I was already close to the teacher because she taught Roo last year. I work in there on Thursdays and Fridays, 7-11. I then work in the office from 11-2:30. I love it. I was a Social Worker and Children's Crisis Counselour before my oldest was born and while I have enjoyed being home with the kids for five years, I was ready to get back to working again.
It's hard on me physically but it helps mentally to be out of the house and feeling useful. By Friday afternoon I am exhausted and there are times when it's hard to walk into the house. I usually go to bed and that's where I stay most of the weekend to recoup from the two full days I work.
The school has been great and I take breaks when I need to and the teacher gives me activities to do with the class where I am mostly sitting down.
I go back to the neurologist on the 14th of this month. He has basically just thrown medicine at me and it has worked for the most part. However, I want a diagnosis and I plan on pushing him to keep searching for one. It's hard because I don't have insurance to pay for the tests he needs to continue to run before he can get a diagnosis.
The great news is, I got the medicaid spend down card (not sure if I have mentioned that here) They will pay everything I owe, $30,000 I just have to pay $5, 000 of that, I have no idea how we will do that but God does. It's really up to the providers, they could just take what medicaid pays them and not make me pay any more. The card is just to cover April and May, unfortunately.
My seizure medication is being paid for by the drug company. I found a place here that is out of the university of Ky that helps people get medicine straight form the drug companies. That saves us $175 a month. I still have to pay $100 for my other meds but we have been able to do that.
I still have severe pain on some days and other days I am fine, I just never know what the day is going to be like. But I am so thankful that I am 100% better than I was in April, May and June. I take it moment by moment and I'm trying to LIVE life to the fullest in the good moments.
Speaking of living, here's my LIVING post for the week.
Jose and I went out for our anniversary last weekend. We went to our favorite Indian restaurant and then took in a movie. I was having a good day.
This day I LIVED.