Another week down means I’m all that closer to getting relief. This week wasn’t the greatest either, though nothing like last week’s pure agony. I made it through this week of school although I missed two class periods due to my intense pain and unforgiving insomnia. This week I bought a snoogle “pregnancy” pillow in hopes it would relieve some of my pain and help me sleep sounder and to my luck, it does. In fact, I love it. I believe it’s my new favorite. I lay with it in bed, on the couch, and bring it on car rides. It provides the perfect amount of support for my back, neck, and legs. Which is why I decided I would make a post of “Chronic Pain Must Haves.” I’m hoping some of the things I’ve discovered will work for them too. I also received a cervical collar to help with my neck when I’m not laying in my snoogle. It’s perfect and helps relieve the pain of compression on my neck. This was one of my issues why I was having difficulty staying in class. Gravity would get the best of me and I needed to lay my head on the desk. I’m praying this will really benefit me, come Monday.
After finding out a Chiari Specialist that was recommended didn’t take our insurance, I was a little depressed. It’s important to me to find a Chiari Malformation expert due to my associated problems and the lack of knowledge of this defect. However, my dad was able to track down another specialist in Houston (~3 hours away) that has done “hundreds of these procedures.” After calling for some information, we discovered he does take our insurance! I have a doctor appointment on Monday with my primary with hopes to get a referral to him along with a new rx for pain medication and a few disability applications I need done for my school (TTU is working with me to forgive some of my missed deadlines due to my condition- I never missed a deadline before I had this). I’m praying that this neurosurgeon knows his stuff and I’d also like to see a geneticist because there are several side conditions that I speculate I have including EDS, POTS, and MCAS. I’m praying that after the surgery these associated symptoms will be reduced or limited.
One thing I am excited about deciding is getting my hair done before my surgery. I was really worried that the neurosurgeon would butcher my hair as vain as that sounds. I had a pixie cut my junior year of high school and absolutely hated it. I wore hats practically everyday to hide it and cried at my insecurity. So I texted my hair dresser about my concerns and I found some undercut hair cuts that make me feel a lot better about having to have the back of my head shaved.
Today officially marks the end of my BonfireFunds fundraiser! I’m pretty happy about the amount of shirts sold. It means so much that people care enough about me to support my condition. Can’t wait to see all the amazing people wearing their purple. I can’t express how grateful I am for the amount of love I’ve been shown.
Look for my upcoming post!