ssi appointment set pain untollerable

Yup, I finished the paperwork, and guess what, I get to do it ALLOVER again. I have to put it online, I nearly flipped out when she said that and cried, I can't sit to do it, so Chris lovingly volunteered to try to do it for me.

My appointment is for March 18th at 9am.

Today the pain has been beyond control, I know my pressure is way up and if I had insurance, I would have called and asked for a spinal tap as soon as possible, it has been that bad today.

I am so tired of this being sick sucks.

I know God has a plan but its so hard. In the morning we are going to get my CPAP adjusted lets hope I can deal with the change 17 is almost double what I am at now.

for some odd reason the last post wont allow me to edit or type anymore, so I have to finish here, weird

After we get insurance through disability we are to aim for a spinal tap and probably a consult with yet another neurosurgeon to get a ventricular shunt placed where we can control the pressure.
We need a doc that isn't just going to wait til I go blind to do so though. I am tired of being sick all the time and the PTC is having just as strong of an effect on who I am as my leg is....but its been a year since I have been able to walk.

Headaches, Drs, Visits, and Disability OH MY

This morning was very hectic.
Today marked a new milestone, we are OFFICIALLY applying for disability.
I saw a new neurologist this morning. I liked him alot, he was very intelligent and literally seemed to know more about what I am going through than ANY other neurologist I have ever seen before. He didn't act like it was a big deal, and truly seemed concerned.
He is coordinating care with my rehab doctor to get me on disability and to get me insurance through the state. Once that is happening we have lots to do, but hopefully we can get this mess under control and FAST. I am tired of being sick all the time.

He is upping my Topamax from 50mgs a day to 200mgs a day for a month than 400mgs a day in a month.
That is where we can start because I get that from patient assistance.
After that we will aim for a

What a week its been

I know I have not been posting often this month, its been crazy, between school, doctors, errands, and homeschooling and studying and trying to squeeze in family time my schedule has been a bit tight.

Headaches have been bad several days, leg has been giving me grief too, but I am having the occational good day it gives me hope.

one of those is better

Lauren isn't still sick, thank GOD. I was afraid we were going to have to make a trip to the doctors, she has not been since she was 9 months old, she is never sick.

She was complaining about a headache and I was stressed out about her having my headaches, its been almost 20 years and I will not have my child go through what I have been though.

My headaches and back, neck, and leg have been killing me today.

We did get a new computer today. Its helped me be able to study for school, and catch up on stuff I am behind on.

study, rest, clean up after sick child, prop leg, take pain meds, study, rest, help sick child feel better, prop leg, take pain meds, try to take a nap whilst sick child naps...

I am stuck in a loop and its not working well. Lauren had 3 days of not feeling well, she scared me to death having a bad headache for two days, needless to say since my problems revolve around debilitating headaches, I was super stressed out... fortunately today she is feeling much better.

I have been studying and trying to stay off my leg but off my bottom too, sitting and standing are killing me, but laying down isnt any better.

Next step---

Today I saw the rheumatologist.

The pain in my leg has been absolutely unbearable lately, and she encouraged me to apply for disability and ssi as well.

Tomorrow I will call to check on my rehab appointment (and likely make it for next week instead of whenever it was)

After we get the ssi approval and medicaid that goes with it, she wants to send me to pain management since that may help me recover...I am willing to try just about anything.

She did up my muscle relaxant to 3x a day and she did give me 2 more refills. The headaches have been quite bad too, but pain management deals with ALL pain, not just the leg and back.

She told me there is little that Social Security can do to disqualify me since I cant walk or sit or stand without being in lots of pain.

No Insurance sucks

Well, I had my Neurosurgeon follow up today, absolutely nothing going to happen, I come back when I need to if my vision deteriorates or if my doctors say I need to.

He would like me to have gastric bypass, to keep working towards disability and full medicaid for my leg. He did write off my bill for today though.