Thursday, February 18, 2010

Can I honestly say I don’t know what to Title this?

It's not that I am at a loss for words, it's more that there are so many spinning around I can't sort them all out.

When I wrote last week it was one of the roughest weeks I had had in a while, I usually keep those times private, not because I do not want to share them, but because I don't feel most people truly understand what it's like to live with not one, not two, but three or four chronic conditions that are all blamed on my weight. When I talk to other people in my family though, I just do not feel it's all weight related, yes, if I lost the weight, I would feel better, but fact in hand, and medical proof exists, these problems are related to my central nervous system NOT my weight, Oh how I miss the one doctor who REALLY understood that reality, This is the one time I really wish I lived in Canada (yes, I know Canadian Health care isn't all that great either, but the Doc who saved my eyesight and understood that my problems went much deeper than losing the weight (he also recognized that the PTC causes weight gain not weight gain causing PTC, A whole other rant, not for today) is located in Toronto

In two weeks I see the new Neurosurgeon; I can only pray he is familiar with Chiari and the deeper issues within my brain so that I can get to the bottom of the whole mess. Since my last post, I have had numerous close calls with falls, Chris is a wreck, he helps me a lot now because he is extremely concerned, my balance is horrible but I am too stubborn to use the cane around the house, I should be able to walk a few feet without it, at least indoors, I used to be able to and I hate the deterioration.

Today I slept A LOT, I fell asleep just after 11:30pm and slept til 10am, I woke a few times during the night, but that's normal, then we had brunch, which took EVERYTHING out of me, I looked over school for me, went over school with Lauren, and got her working, fell back asleep and slept til 4:45, so I think I was awake for maybe 7 hours total during the day and they were not consecutive. Right now I am glad Chris is home. This is the first day I have gotten to nap, but apparently I needed it more than I thought.

In all honesty, tomorrow I have to make a few calls, and I am truly terrified to make one of the appointments, my Pulmonologist wants a 2D echo, I have not had much luck with tests lately and I don't think I can handle finding any more problems. My head is starting to hurt, I keep laughing at my appointment with my neuro asking if I was feeling depressed, I so wanted to ask him how he would feel if they kept finding more problems with him every single appointment instead of finding the solutions once in a while.


I would love to lose the weight, have been working on it for years, Lost several pounds recently, not enough to make any of my docs happy though. However, my mom, grandma, and all of my aunts are all morbidly obese as well (lets get real here, I come from a family of fat females) Mom and many of my aunts have obesity related health issues, High Blood Pressure, Diabetes, Stroke, Heart Disease, High Cholesterol, you name it. None of them have PTC, Sleep Apnea, Chiari, or any other neurological condition.

Up until THIS last Glucose Tolerance Test, I have NEVER had a high reading in the abnormal range, and I have suspected insulin resistance for years, (I have lots of symptoms of insulin resistance (and none except my mom do) my blood pressure is normal at all but one doctors office, my cholesterol has NEVER been high, I have had PTC symptoms since 1989 (when I weighed a mere 125lbs, which is less than what they expect me to get down to if I were to have bariatric surgery, so I don't expect improvement, since my symptoms started when I weighed less than they ever expect me to weigh) I had a heart attack by an Overdose of A Pain Medicine In a regulated HOSPITAL setting, Had I not been on that medication (which wasn't helping anyhow) my heart would be fine today and I wouldn't be at risk there, my sleep apnea is caused by the PTC and Chiari (since the Chiari is compressing the BRAIN STEM, which houses the Respiratory center, heart rate, and OH Yeah, THE BALANCE center, which explains the constant falls. ) Hmmm, I am a bit frustrated. If this neurosurgeon is not willing to LISTEN, I am calling one in Detroit, I have a recommendation from a girl on a support board, I plan on meeting in person, she lives close to where I used to live before I moved to the country, But we will visit Downtown to the Henry Ford Hospital SOMEWHERE in Detroit (I have NEVER been there) and meet with her doc if this one doesn't listen, I am so desperate for answers and to be normal again, although my hope is more for some semblance of stopping the damage that is happening…right now I know some of it is permanent, I want to keep it from becoming totally permanent and winding up totally paralyzed because this is "elective"


My daughter deserves a mom who can walk outside in the grass and play with her, not someone who can't be touched because she is in constant excruciating pain and enduring just because she feels it's what's best.

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