Menopause makes you hangry

*245*

Must stop eating! Cannot resist holiday sweets! 

 Okay...My internet was down for five days. There was issues with the company for two and I needed a new modem because mine is obsolete. The dude showed up Monday evening and all is right with the world. 
I finally got a call from the neuro and yesterday I was emailed the report. My brain is fine. There are no aneurysms or stenosis or any at all. The neuro said that I show no damage from IIH either so he is back on the * you dont have it* bandwagon. He said the bad news is we dont know what is wrong with you. He is sending me to a neuro ear doctor on Dec 4th. My surgeon is a neuro ear doctor. I am just going to look at this as a 2nd opinion. Maybe a fresh set of eyes will see something the others dont. I have been told by people on boards that my opening pressure with my spinal tap was not borderline. 26 is a high number. It isn't super high but enough to say that I DO have IIH. I am not taking the Diamox. It makes my chest hurt and I feel like I cant breath. I have to control this with diet and use the pills therapeutically.  I get a letter confirming my appt. It said it was from the Yale Stroke clinic. Freaked me out a tad. I think this neuro works in area. I cant dwell on that. That appt is the first Friday of December. 
  The contest voting ends on the 20th. A couple more days and I will find out if I am a finalist. Wish me luck! I really want the grand prize. 
  If it isnt nailed down, I am eating it. It has got to STAHP! I am eating lower sodium but carbs are calling this diabetics  name. I gotta add some fruit and veggies to my life. I refuse to gain the weight I lost cause of a lack of estrogen. I dont make excuses. I pick it up and eat it and I shouldnt. Stop it Heidi! Stop it!

  I have almost all of my Turkey day foods. We are having a turkey! I decided and that is that. I have to pick up my free ham that I will use for Christmas. You spend $400 in groceries during a certain time and you get a freebie as in turkey or ham or chicken or vegetarian lasagna. They used to offer a tofurky but they arent this year. Damn! I was really looking forward to it.  *lol* We will do a marinade on the bird the day before. My mom`s sausage stuffing. Broccoli casserole. And twice baked potatoes. We need a veggie platter too.
This grocery shopping trip will be all about the veggies. Mmm! I lurv Turkey Day!

 ummmm.  Oh. All the junk is gone from the patio and side of house. Blessed be! I hated looking and smelling it. The next project is painting the livingroom. The kid is gonna help. Yes.


So that is all with my saga filled life so far. Looks like fun, huh? 
  

I will never pinkie promise!

*241*

  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 pinkie promised. I gotta remember not to do that. Ha!

Here we go again

*246*

  I woke up with a headache and some other stuff  that I will explain. It is a slow going morning for me. Please excuse any typos I miss. Let`s see. Where to begin?

   I went to my GP for my three month diabetes check up. I told him what was going on with my head. Long story short, he poo pooed me and sent me on my way. I had a appointment with my neuro to review my MRI but that never happened. They had to cancel the whole days appointment cause the computers were down. They would call me back to reschedule. They never called. So I called my GP asking if he would find me a referral like he offered.  It took him a couple days but his assistant called to say he found somebody. He was sending me to a headache and pain clinic an hour away. I was a bit livid. I tell you I think I need to see a neuro but you send me to a migraine doctor. I grabbed the phone and decided I was going to take the bull by the horns. I called my ear surgeon`s office in new haven. I lied to get a appointment. Unless you say that your appointment has to do with ears, they wont give you a appointment. So I said it was my Meneire`s disease. I got right in two days later.  I am so glad I did that!

  I told him what was going on. How the pain progressed. Then I just spit it out about the leak. I waited for him to poo poo me too. He didnt. He looked at my MRI and said my left mastoid is full of fluid. My left nostril is inflamed a bit from the drip of CSF (Cerebral Spinal Fluid). I have no infections in my ears so he knows it is CSF. Just like before, he said. I have to have surgery right away. He is worried I will get meningitis. He said that he has written two articles for medical journals and that Yale is doing a research study right now about what is going on with me. I have a csf leak of the temporal bone. He will start with a mastoid (behind the ear) approach but he could have to go to the front by my temple. Hope not!

  We have to find out why I keep springing a leak. I had a leak on my right side. And now on my left. He also suspects that they will have to go up into my nose to see if I cracked my sinus cavity also. They will be able to patch all this at the same time.  I go back to Yale this Tuesday to have a Cat Scan done. Then we will meet at his office after to review and to schedule surgery. See, he is a ear dr. But he is also a super hero in skull base surgery, Dr John Kveton.  He feels that I have what I figured out a month ago, Intracranial Hypertension. I told him about all the problems with the different neuros in our area. He did say that the Headache/Pain clinic is a very good one and they could help. He said that I have to have a spinal tap sooner rather then later (YUCK!) because once he seals me up, the pressure in my head will build to the point that I will just spring another leak. He is going to hook me up with a neuro at Yale.

  I actually shook his hand. He understood. To be THIS sick and have Doctors tell you it is just a headache. You have a sinus infection. Take this pill, it will go away. Someone listened to me. He believed me. He said all the things that were wrong with me were right. I let him speak because I wanted to hear what he thought. He said everything I concluded myself. We celebrated with pizza before we drove home. Only sick people that get a correct diagnosis would understand the celebration.
    I dont really blame my GP. He is a endocrinologist and he stopped me at one point and said it was above his pay grade. LOL I am glad he didnt just dismiss me outright. Wait till I have to go in for a physical before the surgery. I bet he will be shocked he was so wrong. But I still really like him as a Dr.


So today sucks because I am leaky. It is probably the weather. I have been eating low sodium (1000-1500mg) since before Easter. That means I gave up soda also. There is a long list of no foods that I avoid because they make the pressure in my head worse. Once I see a neuro, they will get me on some meds to control it. Between meds, tight sodium control, and weight loss...i should be good. There is a possiblity that I may have to have a shunt in the future but I want to avoid that at all costs. I am not too keen on gastric bypass surgery (as many of you know) but if I have to do it, I will. This will not kill me in itself. But I could go blind in one or both eyes. I could have complications from thee shunts. I could get more leaks. I have to be more proactive then ever before.

 I have some errands to do today. Even though I feel like crap, the show must go on. I will keep you all informed.

Halloween is coming!

I have not really decorated because I have felt so shitty. Today I realized that Halloween is coming in 9 days and Natalie`s 19th birthday will be in 7 days. She wants an ice cream cake and I will make cupcakes for those of us that want CAKE. She is getting a tattoo for her birthday present. Great Mom, huh? Shit, I wish I was getting the damn tat.
 Today I decided I am going to do a bit of decorating outside. I have some stuff I can use. I have lights. I have decor. It could look nice and understated. We decided that we are going to buy a couple bags of candy that we all like plus 5 large candy bars. If all we get are two or three kids, they will get the big bars.
 So today I will try NOT to bend over too much. I want to clean the front of the house just in case we do get trick or treaters. Plus it is gorgeous outside!
I see my surgeon on November 9th in the morning so that I can ask as many questions as I can so that I am fully informed. I do not want to go in there completely blind. I have read plenty online about how this surgery is done but what if he is doing something radically different? I want to know!
 So another trip to New Haven. No bakery this time. I have had enough for awhile. That is a treat and I am ruining by going there every time we go to New Haven lately.

Okay, gonna go out there and cut some shit down. You have a great Monday. It is a nice one out there!

Sleep! Sleep! Sleep!

I have not had a good night`s sleep in three days. I am on my fourth day on the zpack and the shit isnt working the way it should. I can tell that it did some good but it didnt give the push I need to get this bacteria out of my system. I am still relying on Advil to get me through a less painful day. Still in pain in my throat (better) and my right ear (ugh). I am tired of being in pain and not getting any sleep.

   In other news, My neurosurgeon and his partner will not do the surgery here. It is beyond their scope. Dr P said he has been a surgeon for 30 years and he has only seen a handful of cases like mine. He said I NEED to go back to my ENT surgeon at Yale and get the work done as soon as possible. The fact that the meningitis can put me one foot in the grave should have me running to call him.
 So I called the office and my surgery is re-scheduled for November 14. Fred made me do it. We do not have $1500 to pay the hospital. I think that is our deductible. Fred was told by the bitty that would not send a referral that I can make a payment plan at Yale. I can pay as little as $10 a month if that is all I can afford. I have not talked to them yet cause they have to get everything in their system to do it. I have a fear that they will not take a payment plan. They will want all the money up front. That will mean I wont get the surgery at all. Fred says he can get it from his job or he knows people that can give us the money, but I do not want to owe anyone any money. We do not have $1500. I cried all day yesterday over it. Tells me that I could die without the surgery but does not realize we do not have the money to pay them. No money no tickie.

I am sorry. I am just talking. I am not expecting any help so do not take this that way. If worse comes, I will have to delay the surgery until i can save up the money. I guess I could do that in a few months.

Hoping I get a better antibiotic and some sleep tonight.