Wednesday, April 28, 2010

My Brain and I are NOT getting along

I know my posts seem sporadic; they seem to be running with my sleep patterns. Today I went to pick up my scripts and nearly lost it at the pharmacy. A simple trip through the drive through and I am Changing pharmacies No ifs ands or buts about it. I have had it up to my eyeballs (which are in almost constant pain the last few weeks) but I am tired of crap.

I have not slept a solid 4 hours in more than a week. So I am severely lacking in patience. I have never felt so blessed to NOT hear my phone (the tinnitus is actually outdoing household noises lately) But I went through the drive through to pick up my scripts that have been ready for a week now (I call them in before I run out)

And I am dealing with the lovely pharmacy, my scripts are ready, and the person in front of me is PARKED in the drive through…yes PARKED

They actually Filled a second script and WAITED

I could have screamed. What is the point of drive through convenience, then I get up there and they can't figure out one of my meds. It's been $8.72 for the last year, and all of a sudden they can't figure it out because it's not covered by Medicare. I was ready to scream…My pressure has been up, I know this, I can feel it and I am getting to the point of actually being willing to go in to the ER, however I just want to finish this semester in school first.

Next week I see my endocrinologist, then 3 weeks later I see my neuro, I want to be able to hold out til I can see him and see if he will schedule one and do it himself instead of having to get it done in the ER. Then the following week I see my Pulmonologist. I just am tired of feeling crappy.

Wednesday, April 21, 2010

The Path Life takes us down

A little over a month ago I wrote a post about twists and turns, In 10 days it will have been 27 months since my shunt came out and within months I had seen two different docs that when their "weight loss" suggestions netted me a mere pound or two in a month down on the scale (sometimes it didn't move and sometimes it even went up) they started suggesting bariatric surgery. The neurosurgeon at the time good as he was (he found the Chiari) but he could not figure me out, and he suggested gastric banding in other words Lap band, when my pulmonologist could not get my sleep apnea under control with massive pressure increases, she complained that I needed to see about some sort of "surgical weight loss"

Well…when my shunt came out there was a simple catch, our insurance covered NOTHING weight related, and I mean NOTHING. If it was mentioned on the report it was not covered.

Then in December when Chris lost his job that was the end of that, there was NO WAY we could ever pay for it on our own, but I was getting sicker and sicker and I had been seeing an AMAZING rehab doctor who referred me to the neurologist in his office (closer to home and much more competent in taking care of me) He did NOT mention Weight loss Surgery, He said it would benefit me and my Overall Health, but he did not promise an overall cure either.

Dr. Turner after a year asked me a question, I nearly had had a breakdown in his office, it was a bad pain day and nothing was going right, and I simply asked why my body was working against me. So he started asking a series of yes/no questions and suggested that when I get insurance I see an endocrinologist…My pulmonologist agreed and since he had not referred anyone she had Just the someone in mind.

That someone happened to be Dr. Zambare, she also is one of the lead doctors for the Medical weight loss team through the hospital where I had done some research and they have the BEST in the area of what is called Center of Excellence (Medicare requirement) Hospital for bariatric surgery.

My appointment was scheduled for the week following my Medicare effective date.

I had lots of appointments that week, since it was the first time I had had insurance since December 2008 I had everyone stacked into 5 days. I had been having some issues with my balance and mentioned them to dr. Turner (neurologist) and he sent me for some blood work (then Dr. Zambare did not repeat any of the tests) and I was diagnosed as pre-diabetic to add to my Intracranial Hypertension/Pseudotumor Cerebri and Chiari and Sleep Apnea, well, She put me on some initial meds to help with that but suggested I go to the two seminars about their weight loss programs (Medical and Surgical) where they go over the options and cost and basically tell you about what they are.

I had always had it in my mind that a lap band would not work, The reason I felt this way was I had read a lot about people who NEVER succeeded with them and since I already follow a portion control diet that isn't far from their post op diet (except the immediate after surgery of liquids and purees) I really didn't see how that was going to do me much good, well I also couldn't figure out why all the (non bariatric) doctors kept talking like this was easier and it would make me skinny and it would all go away.

Uhm, HELLO, I have A LOT of weight to lose, some 200lbs or more, ideally, but I do not see that happening easily under any circumstance. Very few of my doctors seemed to have the reality that that was not going to be easy, I have family and friends who have had a few different procedures bypass, banding, and stapling, and gained all the weight and then some back, I just could not see the point to putting myself through that and gaining the weight again.


Well I went into the seminar mid March and the first thing the Dr. doing the seminar said was THIS is NOT easy; it's JUST a TOOL, Hello!!! The lights went off and it hit home. I am handicapped, YES, but I can use a tool to Help me, just like I use my cane to get around, this is not going to make my weight come off, but it can help with the excess and it may not make me the Ideal weight, but it may help me get closer to it, and that is more of my goal.

SO, this morning, I had my appointment with the nutritionist, she gives me a goal, I wasn't too happy setting this goal, until I understood what it meant.

Every goal, has a meaning, our last goal was to try to eat more meals, EVEN if they are little, because I had the bad habit of only eating once a day, now even if it's just a yogurt, I have something at least twice, Today, I actually ate 3 meals though.

The reason you need to be in the habit of eating often is your metabolism thinks it's being starved and it HOLDS onto the fat stores. Another thing, she wants me to start drinking a protein shake as one of my meals since I struggle with eating. I got sugar free Carnation Instant Breakfast (I need to find them in the Variety Pack, Meijer only had Chocolate) and I am making them with 1% milk that counts for both a MEAL and my liquids, a 2fer.

My second goal is to start drinking more Low calorie beverages, That means I get to go to GFS and stock up on Fruit20, Now, nobody go suggesting plain water to me, because the one thing I have learned, after surgery I will have a VERY hard time with Plain water, especially the way I like it (ICE COLD)

My THIRD GOAL Ok This is the HUGE HUGE and ASTRONOMICALLY HUGE goal, is to get the rest of the stuff done on my check list, because they should be able to use Dr. Zambare's records as Dietary records which means…..Drum ROLL I need to complete Turn in my paperwork to get my Stress TEST, My Psych Eval, and THEN, we can schedule surgery

YIKES YAY Needless to say I am both excited and nervous, that means we are as little as 2 months away.

The heart of man plans his way,
but the Lord establishes his steps.

Proverbs 16:9




Thursday, April 15, 2010

Mixed Emotions for Mixed Headaches

Well today has been a VERY challenging roller coaster ride. In fact, this whole week has been that way.

Sunday, I went to Lansing with my family to meet other people with IH, it was very different to meet Face to Face people who have the disease that has literally been taking so much out of me.

Samantha who coordinated the whole event along with Jenn from Grand Rapids area and Monique and I From the Detroit area were there, we were expecting at least 2-4 more people but they cancelled last minute, that I have to say was kind of disappointing, the drive was very hard on two of us and we have been paying for it ever since.

Sunday I had my first low pain day in ages, it hovered around a 4-5 until we got home, that was purely the grace of God because I know I could not have handled a rough pain day and travel.

Monday my pain was back to normal, but nowhere near what it has been growing to over the week, but I had other things stressing me out. Lauren has been having issues dealing with me being sick and My heart was tearing in two, We were blessed with the book Caitlin's Wish, by Victoria Taylor, A Recommended read for ANYONE who has children and has this Pseudotumor Cerebri/Intracranial Hypertension, It truly will help the whole family see what the patient feels, even if in just a small way.

A good friend of mine in Texas with PTC was supposed to have a "simple" procedure done Monday and wound up in ICU for two days, while she is recovering nicely now, it's still traumatic knowing how hard it's been on her, she has been such an inspiration to so many and we miss seeing her online.

Tuesday my pain decided it was going to increase even more but I was still not in the mood to go to the ER. Wednesday night, a Lady from Church who has been waiting for a liver for a transplant got the call and got her liver this morning, yes Tax day April 15, 2010 will be a day Sweet Sue will remember for ever as a day of second Chances, God has truly blessed her today.


My head has decided that it doesn't know if it wants to have Chiari headaches, PTC headaches, Tension headaches, or Migraines, or likely a LOT of all of the above.

I am in more pain than humanly imaginable. What started off as just occipital pain (back of head) has moved behind right eye (bad eye) then left eye (good eye) and now has decided to take over where my sinuses are too, then ears, shoulders, back and neck, then radiating down arms and legs. Even my hair and teeth hurt. I don't know what to do…I see the dietitian on Wednesday next week and I see my neurologist in May. I am seriously thinking of calling him if it doesn't let up, but I have to drop off some stuff at my primary doc and maybe I will ask them, or maybe I will hold off til my stress test and see what happens then. Dunno.