I've been on an emotional roller coaster the last couple days. With the loss of my high school algebra teacher, my 21st birthday, the quickly approaching 5 year anniversary of my Gardasil HPV vaccine injury, and the start of my second half of my junior year of college, there's been a lot on my mind. Thankfully, my pain management doctor agreed to keep writing for the medication I need and my neurology appointment got moved from November to September 5th. I'm still doing IVIG every 28 days and it's hard on my body, but for the three days it works a month, it works pretty well. We need to adjust the treatment plan at the next appointment as I am getting worse.
I feel so incredibly blessed that God answered my prayers today! I ventured up to Cleveland to see my pain management doctor with my dad. I was prepared to fight for a treatment, but thankfully, I didn't have to. I did extensive research on CRPS treatments and medications that I haven't tried. Benefits, risks, efficacy in clinical trials... Really all of it. During the drive up, my dad and I discussed different options and came up with a few, but none as good as my existing treatment plan.
At my last appointment, I was told that the one medication that has been keeping me functional, allowing me to work, go to school, have a social life when I want to, volunteer, and participate in sports was going to be discontinued. At that appointment, I was by myself and it was a huge blow. I was not expecting the appointment to go as badly as it did, so I went by myself. Big mistake on my part. I really just think the doctor was having an off day, so that's why he said the stuff he did.
I pled my case. This medication is the difference between going to school and not, working or not, being able to care for myself independently or not, being able to do sports and hobbies or not... Overall, being functional or bedridden. It was pretty simple and obvious that without it, I'd be a skeleton of myself and we know that when my body gets to a certain level of pain, instead of my heart rate rising, it drops dangerously low, which can cause a whole bunch of problems, some life-threatening like Mayo.
I always thought that because I have never taken (and never will take) opioids for chronic pain management (they don't work anyway and I'm allergic to them) and because I use my medications responsibly, I didn't think that the opioid crisis and the Ohio Heroin Control Law would affect me. After all, I don't take opioids and heroin is an illicit substance with no true medical use. Additionally, the medication is not controlled as tightly as opioids. So why did it affect me? It's because doctors are too afraid to prescribe any medication to people, even those who use it responsibly. Opioids and heroin are big problems right now, but the DEA should not be scrutinizing prescriptions for some of the least addicting schedules of medication. It is absolutely ridiculous and I've been told to makes them fearful to even write a prescription for an acid reducer for acid reflux, something that can be generically obtained over the counter. This is getting plain ridiculous.
But nevertheless, I have another six months of medication that will allow me to continue to live my life. At 21 years old, that's huge because I have things to do, people to see, sports to practice, and people to help. I'm not ready for my life to be over because I can't get the treatment I need to stay healthy.
I couldn't get the medication for a while because of the doctor, not the insurance company. I've been paying out of pocket for the medication for a year now, ever since UPMC and my secondary insurance decided to stop covering it.
A fantastic trip the dentist the other day! No cavities and they were careful not to dislocate my jaw due to hypermobility or keep it open too long and have it spasm shut. Afterwards, the hygienist put a warm washcloth on my jaw and massaged it until everything settled down. Good experience overall.
I think that's all for me. Until next time!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!