This post is a little overdue.. I think I might have been procrastinating it because there are many things to update with regards to my health. So I apologize that it’s a little lengthy. As per usual, it’s one step forward, three steps back, rinse & repeat, every few months. In other words, it seems as though I have a massive flare, and get ridiculously sick every few months.
It would be one thing to just accept the fact that chronic illness means that you tend to get sick more often than most–that part I’m okay with, or at least I have come to terms with it. However, this is usually a huge setback, massive illness, nights in the ER, etc. That’s not okay, nor is it normal.
As I mentioned when talking about my experiences at #MedX and #TXFM, I was in probably the worst flare I’ve ever had during my travelling. When I got back, I knew that I would get sick. With the back and forth on airplanes and in airports for almost two weeks straight, I knew that I would have caught something. In addition, I was in SO much pain. I could barely twist or bend over. I got blood work done and scans from my rheumatologist; with Remicade and regular medication, my blood inflammation levels were in the 40s (4 times higher than they should be when getting infusions). Two rounds of steroids later (curse you Prednisone), and the inflammation still hadn’t gone down. Then, I started to get severe body aches. It felt like the type of body aches you get when you have the flu, and then multiply them by 1,000. I could barely move.
Per my doctor, I went to the ER. They had to give me Adenosine in my IV to slow my heart rate down–I measured in at 165 BPM and 170/110 for my BP. Yikes. The doctor said it was because my body was in such distress from being in so much pain for weeks. After that was under control, we ran CT scans, blood work, and I finally got some pain meds (thank god for Dilaudid).
Luckily CT scan was clear (no pneumonia), but I still have elevated inflammation levels, some kind of infection, and, cherry on top, the flu. After antibiotics, pain meds, and days of rest–at least part of that started to get better. Once the infection and flu were out of my system, the pain was lower. But the inflammation levels are still in the high 30s. This is where we tag in Methotrexate.
I knew this day might come where my rheumatologist would want to add Methotrexate to my plethora of treatments. And I’m not 100% opposed to it (obviously, since I started taking it a little over a week ago). But it’s scary. The side effects are nothing to wave off: fetal death/birth defects (not planning on being pregnant anytime soon though anyway), nausea, hair loss, decreased liver and kidney function, etc. I have to get regular blood tests to make sure that none of these side effects are happening, particular the liver and kidney damage.
So what is Methotrexate? Well, simply put, it’s chemo. It’s a very low-dose form of chemotherapy. Just typing out those words gave me goosebumps. Methotrexate is a common medication for autoimmune arthritis diseases; but that doesn’t mean it’s without risk, or that it’s something I want to be on. It scares me. But I guess, I’m willing to give it a shot for a couple months until we can figure everything else out, and find out what we’re missing here.
This puts me in a position that is really hard to know what the right thing is to do. On the one side, I have toxic drugs that have the potential to cause very severe side effects on my body. But on the other hand, without the toxic drugs, I have high blood inflammation levels, which equals an active disease, which equals high risk of permanent damage to my spine. How do I choose the right thing, or the lesser of two evils?
I guess for now, I’m trying the drugs for a couple months, while I let a couple other things iron out.
I have an appointment to (hopefully) schedule a procedure to get a spinal cord stimulator implanted. If this happens, and if it works, it would lower my pain levels 40-80%. Thus, lessening the pain meds that I take, and protecting my liver and kidneys in the long run.
(Video is of spinal cord stimulator implant: from MedTronic devices)
Another thing in the works is getting a second opinion. I’m working to go through Mayo Clinic for this–but I have to see what is the best financial decision with my insurance. I know they’ll cover most of what I’m looking for, but I need to know the process.
It’s not that I doubt the treatment plans my rheumatologist has put me on and recommended. I don’t doubt his intelligence or ability. However, I’m not even 30 years old yet. I have a lifetime of disease to live, and more importantly, I have a lifetime to actually LIVE.
Quite the health update, I know. But that’s where we are. One step at a time, one day at a time. That’s #ChronicLife.