I have Fibromyalgia. There! I said it! My last blog post was in 2018. I don't want to say that I had forgotten that I have fibromyalgia. One does not forget that they have a debilitating hyper immune system that will freak out over the stupidest things. It IS possible to ignore it though...until you can't.
If you don't know what Fibromyalgia is, it is somewhat of a catch-all disease. It's the "I don't know what is wrong with you, but there is definitely something wrong with you, so since we don't know what is wrong with you, we will call it Fibromyalgia" disease. At least that is how I look at it. All I know is that when I was 26 a rheumatologist poked on me in 16 places and since it hurt (like really bad hurt, like 10 out of 10 hurt, do not recommend hurt) when he poked on me he said, "Ah...you have classic Fibromyalgia. Take these pills and do physical therapy and see me in 3 months." I checked out a book called Fibromyalgia for Dummies and was horrified when the last chapter was all about how to get disability for Fibromyalgia. DIS-A-BIL-A-TY!!!! What the heck had I just been diagnosed with?
Fifteen years later, I still ask myself that exact same question because 15 years later, scientists still have no idea what Fibromyalgia is. The best way that I can describe it is that I have the immune system that reacts like a 14-year-old dramatic girl who just had her boyfriend break up with her and life as she knows it has ended. Simple things like having your arm hit a wall as you walk by would be no big deal for most people. For me, my body reacts like I just broke my arm. Full blow: ABORT MISSION. WE HAVE DONE SOMETHING BAD. SHUT DOWN! SHUT DOWN NOW! When most people get stressed or too tired, they continue to function. My body shuts down and treats me like I am dying and there is no end in sight. In my journey, I have worked really hard to find those things that trigger that 14-year-old dramatic girl and have tried to keep her as happy as possible. Apparently, I have done a great job for the past 3 years because she has not been that dramatic...until 8 weeks ago.
A COVID work environment+stress+a major mental dillemma+a busy schedule=the setup for disaster and the reminder that you do, in fact, have Fibromyalgia. Unless you have lived under a rock, the COVID vaccine has been the topic of most medical professionals' free time. It is a very polarizing topic and one that will not be majorly discussed in this blog. I adore the physicians and nurses and allied health professionals I work with and listen intently to those who talk on the subject. Opposite views from people that I truly respect are hard to process. I would toss and turn at night trying to figure out what I was going to do. To get or not to get the vaccine plagued my dreams. I used the research skills that I learned while achieving my Master's degree and found articles that I thought would lead me to my best decision. After a stressful week at work watching people my age die, I decided I would go with what I thought was my best route and got the J&J vaccine.
This is where ignoring things go awry. People ask if I regret getting the vaccine. I do not. I felt I made the best decision at the time and felt it was the best thing for ME to do. It is a decision that one has to make on their own and I am a firm believer that NOBODY should make that decision for you. Do I have to suffer the consequences of that decision? Yes. But I am still okay with that. I only wish that I wouldn't have ignored that I have Fibro and taken the steps to do what I know I need to do in order to calm down a dramatic immune system.
To say I was stressed about the vaccine was an understatement. I originally had planned to get the vaccine when my son was getting his boosters and made an appointment for 2 days after to see my doctor in case things went badly. After a horrible weekend at work, I upped that vaccination day to a week earlier. I went in nervous and came out paranoid. I got SICK!!! I got so sick that I got COVID tested, which came back negative. It was a LONG 32 hours of the sickest I have ever been in a long time. I decided to keep my appointment with my doctor because I still was having some "side effects" that I wanted to be checked out. I discussed a lingering headache and some chest pain I was having. It was at that appointment I was diagnosed with costochondritis. It was the 4th time in my life of being diagnosed with it. Costochondritis is inflammation between the ribs and sternum and makes you feel like you are having a heart attack. It hurts and it is not fun to have. Typically the way to fix it is to be put on steroids and hype up the immune system. However, since your immune system depresses after you come off of steroids, and I was hugging COVID patients every time I put an x-ray board underneath them, it wasn't probably the best thing at the time for fear that I would end up with COVID, even after getting the vaccine. So we decided to do a wait and see if it would go away on its own cause it can do that. Two weeks later I was back in the office. The headaches were gone but the chest pain was still there. Pandemic conditions had not changed and I mentioned the last time that I had been put on steroids I ended up with shingles, so I was put on meloxicam (a strong anti-inflammatory) instead and the chest pain continued. Two weeks later I ended up with a sinus infection and still had chest pain so I got put on a steroid pack then to knock out the costochondritis and an antibiotic for the sinus infection. The steroid pack wasn't strong enough to take down the 14-year-old dramatics so I got put on some pretty strong prednisone and now I am finally starting to see the light of health again.
The lightbulb clicked on when I was doing a google search about how long costochondritis should last. I just happened to see an article that said costochondritis was typically rare but was common in patients who had Fibromyalgia. I had read this before but had forgotten it. Then I realized my reaction to the shot was just a typical Fibro reaction. I needed to go back to the basics. I needed to sleep a lot. I needed to clear my schedule. I needed to chill and eat healthily and make that dramatic 14-year-old immune system know that it was going to be ok and that I will be nicer in the future. It reminded me that no matter how much I don't want to admit that I have this somewhat debilitating disease that I still have to acknowledge that it is there and that I have to cater to it.
I don't like being weak. I don't like admitting I have a disease that doctors make fun of or don't take seriously. (Not all doctors, but many that I work with feel this way.) I don't like having something that science doesn't fully understand and there isn't a ton of research (that I have found) being done to find out what is causing it. Pretending that I don't have Fibromyalgia, sadly, doesn't make it go away, as much as I wish it did. A positive mind is a powerful thing, but even that is no match for Fibro.
So I write this to remind myself that I am a weakling with my own demons to face. I am strong and will face those demons head-on. I am hoping that after this reminder that I can go even longer without having to meet my 14-year old dramatic immune system and that my coddling techniques will improve. Until then, I will rest and coddle and get better and hope that this bump in the road will just remind me how precious recovery and living well are.
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