***This is a piece I wrote about a month and a half ago before I found the doctor that could help. I wasn't going to publish it as some sections aren't pertinent anymore, but I decided that there are other people dealing with this and to publish it anyway.***
I am about to run out of my medication, here is why that is a huge problem.
In an effort to cut down on the opioid overdoses and abuse, the FDA has imposed stricter prescribing guidelines on medical providers. For me personally, opioids aren't effective and I'm not interested in going through life so drugged up that I hardly recognize the pain. Unfortunately for many, that's all opioids do is make the person less aware of the pain because they are in an altered mental state. Not everyone, but many.
So I've never taken opioids for more than 2-3 days after a major surgery. Even then, I rarely even get the prescription filled. However, for the last 4 years, I've been on a specially compounded medication called ketamine. It's a small lozenge I place under my tongue and allow to dissolve. I usually only take it at night, as that is normally the most painful time of day for me. It's been highly effective for me and unlike many other medications, I don't have to take it if I don't need it. Some days I may only need 1 dose, the next day I may need 3 doses, and the next I may not need it at all. I can take it up to 4 times a day and I have a lot of flexibility in terms of taking it. I don't experience any side effects and there's no withdrawal if I don't take it everyday.
The doctor that started me on the medication kept me on it for 4 years because it was so effective and allowed me to be active. When he was forced to step down from his position, I was left to scramble to find someone who would be willing to manage that medication. It is incredibly challenging to find someone to write for the medicine, as most doctors are unaware it is even a treatment. I saw doctor after doctor, and no one had ever prescribed it. I am a week from running out of the medication that allows me to go to school, participate in sports, volunteer, have a social life, work, and so much more. Without it, daily life is filled with unbearable and debilitating pain. All of this will come to a screeching halt without the medication.
Fortunately, 5 days before I ran out of the medication, I saw a doctor who was willing to write for it. He hadn't written a script for it in over 15 years, but he wasn't about to let my life come to an abrupt halt because I didn't have the medication I needed. I drove two hours away, out of state to see this doctor, because no one near me could help. That is not ok. It should not have taken months to find someone that could help me. However, it is the unfortunate reality of so many people around the country.
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!