I really only have one more stop in this “journey” of sorts and then will be caught up, able to talk about events that are actually happening as opposed to bitching about ancient history.
14 March, I had an appointment with my Rhumatologist, Dr. M. The beginning wasn’t
great, I will admit. Her nurse took my pulse by hand and said it was 78. I checked my Apple watch. My pulse was 113. I told him that and he chuckled, saying if my heart was going that fast, he’d feel it. I just flat out told him he was wrong but with a smile. There may or may not have been a touch of, “Well, bless your heart” in that smile.
He left, and I actually looked around to see if there was anything that would electronically take my pulse. I just didn’t want that wildly in accurate number in the record. But nope. Thus it stands—a field of 100+ bpm, punctuated by one at 77. (And you can bet I went out and got a pulse oximeter so that I can medically establish my pulse if I ever need to again.)
I didn’t really feel like I clicked with Dr M. the first time I saw her, but I really did this visit. She confirmed that my shoulder was impinged (I had done it the day before, no clue how, don’t ask) and offered a cortisone shot.. For the first time ever, I accepted one..
She stressed to me again the importance of PT or having some other way of building up the muscles to support my joints, particularly the troublesome ones.
She asked about some of the other appointments I had had. Talking about the TE hair loss, she verbally brainstormed about what kind of injury had triggered it and then jerked herself out of it. “I am talking a lot. That usually means I don’t know what I am talking about, something that isn’t my specialty. I am talking out my butt on the subject.”. Yup, now you know why I feel so much more connected to her. She likes puzzles, cannot help but brainstorm about what might cause things and told me that she was talking out of her butt. What’s not to like?
We talked about meds. The meds used for hEDS and fibromyalgia are basically little siblings of some of the meds that I am already taking. If my current meds aren’t stopping the pain, the ones she had to offer probably wouldn’t either. There’s a great cream she likes, but unless I have a documented arthritis dx, insurance would never cover it and it is not cheap.
We talked about the possibility of acupuncture and pool therapy. That is something I need to look into, insurance wise.
She ordered labs because that’s what doctors do. In her defense, she really wants to make sure that she has baseline numbers of various things because she is very particular about picking up on patterns based on changes in those numbers. For some of the labs, she only had one data point currently and even two is not going to be sufficient for pattern recognition. I will return in 4-6 months, get another set of labs and have the option of another cortisone shot if I like.
I did some heavy thinking after this visit. I was in the middle of writing these blog updates. I have been so focused on finding the magical “missing piece” that I have put my life on hold while looking for it. The more I thought about it, the more I came to realize that I am probably never going to find the magic missing piece.
Don’t get me wrong—there are some things that still are unexplained that bother me. The enlarged lymph nodes. The strange bruising. The mental mind fog that seems to go far beyond what my medications should account for. The trauma or injury that caused each round of TE. What the heck is wrong with my scalp. I am pretty sure that there is an answer out there that would explain all of it. But I am not counting on getting it any time in the future, if at all.
Just like a real jigsaw puzzle, maybe the piece got knocked aside and no one noticed.
Maybe the piece has been missing the whole time and the puzzle just came out of the box one piece short. Hell, maybe the cat ate the piece.
Deep down, I feel like there is something probably wrong with my autonomic system. It would explain the heart, maybe the brain chemicals, maybe the sleep problems, maybe most if not all of it.. But the autonomic system isn’t well enough understood to be able to prove, or even test, that theory.
Those are things I cannot control.. Now I am finally trying to move on to the things that I can control.. Better sleep hygiene. Better nutrition for myself and my family. Exercise. Working on joint stability. Drinking more water. Losing some of the extra weight I am carrying around, which cannot be helping my joints or my heart—or my anxiety.
Lowering my stress levels. Meditating. Easing my anxiety. Finding systems and ways to make my life work, as it is.
Taking my life off pause. Being in the moment. Connecting more with my family. Hopefully reestablishing some friendships that I have seriously neglected.
Being the person I am, this is really, really difficult to accept, but sometimes, you just have to clean up the puzzle and put it back in the box, even if it feels unfinished with one piece missing. But the damn puzzle is taking up the whole table, and I want room to be able to do other things.