Hi everyone! How are all of you doing? In a couple days I will have a comprehensive recap and update for everyone on my first few appointments with the Mary Free Bed Rehabiliation Hospital Pain Center Program. Before that, I wanted to give you a health update, as there have been a few changes, and I want to record for my own benefit some questions and treatments to look into with my rheumatologist in a couple weeks.
I have been doing okay lately. Not atrocious, not good. But surviving! As far as my fatigue, pain, breathing, and tremors, everything is status quo. That means nothing has gotten better; however, nothing has gotten worse either. I guess that that’s a positive!
I have also been continuing to use the Arthritis Power app from Creaky Joints. Although my symptoms have not been going through much change positively or negatively, it’s still nice to hold myself accountable about tracking said symptoms. Additionally, if I decide to share these with my rheumatologist, it allows for a more robust history of my health. I always talk about how I wish my different doctors would read my blog, or follow me on social media (seriously!). It’s hard to have your care team truly understand your updates and questions when they are seeing a slice of you every month or two or three. My day to day is the important part. That’s where my quality of life needs to improve. That’s where my scary symptoms occur (a side note: my phone just tried to autocorrect symptoms to sunrooms, wishful thinking? LOL). Anyway, Arthritis Power continues to be a positive for me and for my health. I’m grateful to Creaky Joints for listening to patients and patient advocates and understanding what we need.
(Photo Credit: Creaky Joints)
So there have been a few changes to my health and/or day to day management. The first one is pretty controversial. I am still trying to weave through all of the information and research out there. I’m still back and forth on if this will be a good addition to my life and to my treatment. I have started to try (about 3-4 times) medical marijuana. I’ll be honest–I smoked a lot in college with my friends. However, that was usually accompanied by alcohol, and it was in a party setting. So a few weeks ago, I decided to try it in a relaxed setting (my own home) and, obviously, without any other substances. I cannot begin to explain to you the way that I felt. I almost burst out sobbing because I was TRULY, 100% pain free for the first time in 3 years. I mean, not just managed pain, truly healthy, with ZERO pain. You guys!
It was an overwhelming feeling. I experienced a rollercoaster of emotions. On one hand, I was estatic and could not believe how much I had forgotten what it feels like to feel healthy and ‘normal.’ On the other hand, it broke my heart and it confused me. It breaks my heart to realize what I put up with every day. How much I have gotten used to the immense pain of my daily life. How much I remain stoic, put on a brave face, and pretend. And I was confused because I’m not sure if I want to use medicinal marijuana. I see now how much it could help me with my quality of life. But obviously medical professionals are continuously learning about it. There is still a strong stigma around it. Now obviously I would only use it at night or on the weekends–I do have a full time, successful career to maintain. However, there are also ways to get pain relief without the ‘high.’ We’ll see. I’m still doing research/trying, but I do think I will be getting my medical marijuana card in the next couple months. If anything, I believe it will be good to have.
Another change: my doctor updated all of my X-rays, scans, and tests so that we had the most recent status of my diseases on record (it had been a year or so for some of the scans). Good and bad news. My inflammation levels are under control, which means the Remicade infusions are doing their job and working. My X-rays are okay. However, my other scans were like a double-edged sword. On one hand, they explained to us why I still have so much pain in my spine when my inflammation levels are managed. On the other hand, it’s a scary realization that I will have to monitor and be aware of moving forward. What we saw was that a couple of my vertebrae and adjoining cartilage/joints are effectively collapsing in on each other. Because of some of the damage I acquired before I was properly diagnosed, plus the time when we were trying to find a treatment that works, and ultimately because at the end of the day this is a degenerative disease, these areas in my lumbar spine are weak and not supporting my back properly. Especially with the natural effects of gravity. So I’m wearing a lower and lumbar spine immobilizer. It’s a black brace with bars in the front and back. The front is to build abdominal muscles which will hopefully support my back better. The back is to make sure I’m standing straight and not bending in on myself due to weakness and deterioration. It wraps around me and can be tightened or loosened for comfort. I don’t necessarily have to wear it 24/7 (it’s just a little unrealistic), but I need to definitely wear it sitting at my desk all day, and then as much as possible other times. I don’t wear it sleeping though.
So, yay! Ha. It is what it is. I just don’t want to get worse. And I’m scared. Guys, I’m scared like hell. I’m 27 years old. I’m scared of walking with a cane, I’m scared of eventually needing a wheelchair. I’m scared of not being able to work. Now, maybe none of these things will happen. I’ll work like hell to make sure they don’t. But it still could be a reality. Let’s just hope for the best.
So there you have it. Those are the updates. Next, I’m just going to list my questions for my doctor. I’m tired, and I’ll try to elaborate on these questions later. But at the very least, I will write a blog post that has all the answers to this once I see my rheumatologist.
If any of you have experience with any of the below questions or treatments, please let me know!
That’s all for tonight folks. I’m exhausted and will write more this week. 🙂