Saturday, May 30, 2015

Oh my aching head

Yeah, that is attractive huh? I dont have the donut anymore. That was just to catch the blood from the surgery. I am home. I am ookey but I am ok. I am not going to tell you everything right now cause my head feels like garbage. Later date. But it was a successful surgery. I had some positive feedback about my eating lower sodium. And I have to sneeze with my mouth open for two weeks. Oh and cant blow my nose. Or strain. Yup

Thanks for the prayers. I will tell about all that went on later this coming week. I will be less foggy. 

Wednesday, May 20, 2015

I will never pinkie promise!


  I totally forgot to post. Let us forever more blame my brain disease. Plus I have alot of shit floating around in my brain. Stuff to do. Stuff to fill out. etc. Apparently this song too. Back in the day (early 80s), I knew ALL the words to this song. All of them. I was cleaning house and I like to listen to my S.O.S Band channel on Pandora. Well, this song came on. It only took like two minutes for my brain to go to the back room to pull out this song. I still know ALL the words. WickyWickyWickyWicky.

I had THE best pre-op physical appointment in the history of all pre-op physical appointments. My Endocrinologist/PCP walked in the room and gave me praise. He said he was proud of me and that he thinks of me differently (in a good way) from this day forward. He said that despite two doctors (him included) giving me the same diagnosis, I decided to advocate for myself. I got a 2nd opinion and found that I was correct. I had diagnosed myself. I knew what was wrong and I wasn't gonna stop till somebody listened. He has great respect for people like me. He is also very open to referring me to a immunologist after all this mess is done. I need some answers as to why I am always sick. There is a good one in Tarrytown, NY
I am fine. EKG was good. He took a bunch of blood work. He knows all about the diamox because they use it in that office. He is going to check my potassium and magnesium to see if I need a supplement. He made me feel better about the pill. I am not as stressed about all the side effects. My chickeny ass finally took my morning pill of it. I was scared to do it. A wise blonde friend told me to just take it! You will be fine. And except for my hands having pins and needles, I am not suffering any ill effects.  I guess my adult make-a- wish night at the casino isn't gonna happen. Oh well. All the high rollers must be busy.

  I go to see my surgeon Friday morning to talk about the surgery. It happens next Thursday. I dont know what time yet. They will call me Wednesday evening. I try to keep myself busy. I worked the beds in the community garden with Kid #2. I did some laundry. I have a apple crumb pie in the oven. Once the pie is done, I peel potatoes for dinner, and finish this...I will go upstairs to crash. My body is wrecked. The diamox is a good pill (diuretic) but it is a nasty pill too.

So there you go. I am sorry I cyber pi
nkie promised. I gotta remember not to do that. Ha!

Saturday, May 16, 2015

April Showers bring May Surgeries


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

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.

Wednesday, May 6, 2015

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.