I am a class A shit head

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    I said quite awhile ago that I would update. Of course my head has been up my ass so I did not do it. If I repeat shit, so be it. I have 15 min before I have to leave for therapy so I am not gonna read back what I have told already.  Blame it on Mame!

   The spinal tap said that I do have IH. I have been taking the diamox. I should be taking it twice a day but I only take it once. I have to squirrel away pills for the new year.  I think the Vit D is working for the diabetes. My blood sugars have been really good. The insulin is working more effectively. Less shots with meals. I am totally not on low sodium but I am watching what I eat. If something is too salty, I put it down. I have to go big shopping for all low sodium foods. So I am doing way better, I am just not a nun about it yet.

  Kid #2 and I have a appointment coming up in March to see a geneticist in Boston. We are on the cancellation list. I might ask them to break us up so that it would be easier to get us early.......
See..I gotta go now. I will post this and continue later..

April Showers bring May Surgeries

*240*


   Let`s see. Where to begin...My eyes are fine. The optic nerves are not being bothered. I go back in six months for another check. Yay!

  I had my sinus cat scan and the nose doctor says it is fine. There are no cracks or leaks coming from it. Yay!

  My surgeon called Thursday night to tell me the good news again. He said I have to schedule the surgery right away and I would see him on the 22nd to discuss what is going to happen.

   His assistant called yesterday. My surgery date is May 28th. Yikes! That is quick. I have a pre op physical scheduled for Tuesday morning.  Real quick.

   The new meds, Diamox, is helping with the pressure and  I am not foggy anymore. But I am so emotional. I run hot and cold. Sad or mad. I hate it. I am hoping this will pass the longer I take it.

So that is it for now. That is a pic of part of my front yard. I bought the flamingos today. They make me happy. I need some happy.

The good, the bad, and the ugly

  I have a very nice neurologist. He is being cautious. He has not diagnosed me with IIH yet. He sees that I have symptoms but the are intermittent. He wants to make sure my problem isn't mechanical meaning the cracks in my skull. He sees some irritation but wants the ophthalmologist to check while I am dilated, they will have a better view. He has put me on diamox, which is given to people with IIH. I will lower then clinical dose for now. I have to call him in two weeks to see if it is helping.  He did tell me that after my surgery, if I get a really bad high pressure even on the pills, to go to local ER to get a emergency spinal tap. Scary.
  I have a cat scan of my sinus on next Tuesday. Simple in and out visit. This coming Friday I have appt with a new eye office. My eye dr is a optometrist and I need a ophthalmologist. They are medical doctors that can do surgeries. When I called she said I had to wait till July. When I told her what it was for she had June. The she called back 5 minutes later to tell me poked around and found one for this Friday. I am very fortunate for that.
  He doesn't want to christen me with IIH until he is absolutely sure. It is a rare, incurable, and devastating disease. I am still in denial.

Life is a trip Part Deux

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 Long story short, I would have had a panic attack if I did not stop the MRI. I was not medicated by the Dr and the headphones to the Bose were broken that day. It was a perfect storm. So I go in today. At 1pm to be exact. They set me up with a radiology nurse so she can drug the heck out of me so that hopefully I wont freak. Let`s see what happens.

  I have figured out what is wrong with me. I am not saying right now. I will wait till I hear it from the Dr`s lips. But it aint good. It is rare. It wont kill me but it is a very unpleasant thing to live with. The meds I am on make me dumb as a stump. I was up to 50 mg a day but I had to dial it back down to 25mg. My headaches are better otherwise.  
 I have made some real life changes ahead of the diagnosis. I know you have heard it all before. I know. I know. But I was scared from what I read. Scared enough that I have lost weight since I figured it out last week.
 I will say more when I am told for sure. Or whatever he says. If I am right, I will have other Drs and other tests to go through too.


Just thought I would let you know. I am sorry for not updating.