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Wednesday, December 17, 2008

My Latest Visit to my Pediatrician

Hello Again. I caught a minute so I thought I'd tell the today news. I went to see my traditional PCP. Not the one that I had in the very beginning but the one I have now, the one I haven't spoke with since the diagnosis and treatment of Lyme started almost four months ago. She gave me my last Gardasil shot and was told about the C-pap machine and how my insurance company, medicaid, denied it for so long. She was really stumped, until I explained about the call we received from Dr. Grant, the Sleep Dr. He basically explained how he wrote an informative letter explaining the long term affects of sleep apnea, even if it is mild, and how much more money that will cost them in the long run if I don't start treating it immediately. I was so happy that he was that intelligent! After all, we were never on the same page about the Lyme and probably never will be, EVER! So I was happy he was willing to stick up for me. Two Claps for Dr. Grant!(later on I figured out it was all PB+J and the letter was ludicrous!)

I also followed up with her on my symptoms, the medications I am currently taking, my soothing solution to stomach issues on ABX long term. She truly thought that I would be done the ABX (antibiotics) by now, since it has been long past the regular 2/3 weeks. I understand that that is her usual guidelines that she knows for ABX, but I simply will explain that when I have had Lyme for an extended time, the Protocol is separate from catching it with the rash in the beginning. I have no worries if there will be a confrontation on this issue in the future, many say I am armed with knowledge!

For those in the Same situation with a non-believing PCP, just understand that they do not know, the do not care, and it is very hard to breech the barrier of what they learned in Medical school and worked so hard to master. They are delicate like a wilting flower and we must nurture their knowledge, not force them to relearn. With great nurturing the mind will start to bloom again and see fully what we mean, so just stick with them because as my mom says: we are paving the way for future Lyme Patients of that physician.

Tuesday, December 16, 2008

Let's Try again!

I decided I wanted to read again. I have been held back from my hobby of sitting down and dusting through a good horse book, and I simply picked up chicken soup for the horse lover's soul and struggled through the stories, one by one last night. I got through maybe 10/11 pages before I stopped, and figured out it took me over an hour. That is a long time for me. I used to swiftly slide page by page and finish 1/2 a book in a little over an hour. I definitely could notice some trouble and delay, but today I shall pick the book up again and not let reading be one of my many weaknesses, but one of my talents. I love to read which has helped me get so far in school. I was upset in the beginning almost a year ago when my head hurt too bad for me to finish my book. So I guess we can consider this as an improvement. I have not come far, but once I got over the rocky hill of headaches and migraines through last week, my head has hurt less than ever, just the tiniest of headaches. My whole body still hurts, and my brain is exhausted, but to pick up a book again is too nice to let this moment slip by.

It is important when you are robbed of all your hobbies, sports, talents, and health that you let yourself slowly feel back those past times. For me it was reading, soccer, and schooling. When my headaches started with Lyme I couldn't continue any of it, and my organizational skills slipped as well. Now I try hard every day to just struggle through reading something, and to pick up my home school and accomplish my days work. So much for soccer though, now I have the horseback riding to lift me up again. If you feel the way I do then pick up something you used to do rapidly and love doing. Together we can slowly pick up the pieces of a crumbled life and work through a puzzling situation. If you cannot do what you loved to do, then find something new. Something that you can feel hope with, and accomplishment. Scrap booking, Beading, writing in a journal, even creating things with Lego's. Everything we can manage is an accomplishment and a corner stone for health!
I am still no less tired but I look at a small improvement and feel hope. Please feel hope along with me. I pray hard that I'll wake up and not have a headache... after so long. pray with me, because that is where my strength comes from.

Wednesday, December 3, 2008

2nd sleep study

This post is about the second sleep study I went back for. It was hard on me to drag my tired body all the way to Dartmouth, a 1 1/2 hour drive! but I didn't have a choice. When I got there I was proud to discover I had the same night tech as last time, and this time he even hooked me up. He showed me how to use the mask, and what it did. It made me look funny... really funny. I thought it was okay at first. As I lie down and tried to sleep, after about 2 hours I discovered that I had forgotten my bedtime pills, I was hungry, Thirsty, needed a straw and some water, and I had to use the bathroom. Might as well get it all in at one pit stop. I also had to change the mask, it was killing my nose. All night long I slept maybe about 4 hours, and went through at least 6/7 masks. They all hurt my nose, and were very uncomfortable. Plus I was in a different environment, my bed was not elevated as it is at home for my acid reflux, and I was hooked up so tightly I couldn't move a muscle, or at least that's what it felt like. It was also very creepy that this guy was watching my every move through a camera, and I could hear it zooming in and out...... Freaky!

At least my mom slept well. even though she was right next to me in a tiny bed that was hard as a rock, I could hear her snoring all night long. Or pretty much all night. Whenever Wayne(night Technician) would come in she'd get up. I was surprised that she slept at all, when she woke in the morning to tell me how uncomfortable she was, may I add I was pretty jealous, I told her she slept just fine, and I don't think I slept any REMs. So I woke early, did the traditional tech test, make sure everything was working. I got ready for the day, scrubbed the gook off my body and out of my hair....Yucky stuff, I have to admit.

I was suppose to get my c-pap machine within a week. Here I am later and they say the insurance company is not approving it yet. I will have mine set at level of pressure 6. It's going to be prescribed ASAP and when I get it I'll go back to the sleep MD for a little check-up. My life is so incredibly busy, even though I am so fatigued, it still goes on.