And the Hits…Just…Keep…Coming

I have classical music playing in the background. My love for the sounds of the strings, horns, percussion, isn’t one that many know of. And probably even fewer people around my age feel the same as I do about classical music. There is just something about it though. No words to interrupt my thinking, just music. Songs that carry their own emotion, with no need for lyrics. I cannot name the composer of most of the songs on my playlist, and maybe I should spend some time learning that fact. Put it on my list of things I want to do.

But at this moment, I have more on my mind than composers. In fact, this whole weekend has been about me researching, thinking, being angry, being frustrated, wanting to be alone, sleeping, and questioning how much more strength I have. I tend to self isolate when it comes to negative things happening in my life, and true to form, that is what I have been doing the past two days.

I sent a message to my care team after a particularily painful day at work a couple of weeks or so ago. When I say painful, I mean close to tears, felt like I got hit by a truck, dip into leftover strong pain meds from a past surgery type painful. I got a message back saying my doctor was going to be out until September something. Fantastic. I did however get a message from another provider who set me up on a prednisone burst in hopes to lighten the pain and an appointment about a week later. The only positive thing about the prednisone is at least I would have some energy. Wrong. No extra energy. How disappointing. My taper ended and I had my appointment this past Tuesday. I like the dr I saw. She asked a lot of questions, answered most of mine and then hit me with a metaphorical sledge hammer. She was thinking that the pain I have been going through for the last oh, I don’t know…it’s been so long I don’t even know…. I would have to guess about 4 or 5 years, is probably not from my Sarcoidosis. Um, what? Pardon? And here, my friends, is where things get interetsing.

It has been a known fact that every time I go into the dr for my appointments, it’s been the same thing time after time. “Blood work looks great” and if I had had some type of scan…”Everything looks normal (minus my liver levels caused by the medication)”. To both of these answers I would say “then why don’t I feel normal?” So medication would be increased (It got to the point where I was maxed out on Methotrexate) and I would be sent on my merry way in hopes that I felt better. I never did. In fact, the meds that were supposed to help me, starting affecting my liver to the point where I was having blood draws every three months to keep an eye on it. After consistently having a raise in my liver levels, it was suggested that I try a new drug (humira), which I did. It was not helping, and after 10 weeks of using it I sent a message saying so, in which I got the general “well, it could take up to 16 weeks to start working”. Last week was week 16. So back to my appointment….the doctor ordered more blood work, and decided to do an MRI of my hand to see what, if anything was happening there. My hands tend to get sore easily, like now just from typing, so she was searching for a sign that Sarc was present. And the results…..drumroll please……nothing. Like usual. Again was told that everything looked good. To which I responded, “I don’t feel f@cking good”. I am always tired. Like, always. I usually go to bed around 8:30-9 on a work night. I always have pain somewhere, with various instensities. I always have grandioso ideas on what I want to do on the weekends or after work that mostly end up not happening because of how I feel. I am not fine, I don’t feel good, and something isn’t right. And finally a doctor agreed with me. You start to think that you are going crazy appointment after appointment with no change in how you feel but still getting the stamp of approval from doctors that everthing is A-OK. Well, it’s not. And finally I have some validation. But with that validation comes another diagnosis. This doctor believes that I have Fibromyalgia, which would explain why the meds never really helped with my pain. But that also opens up the fact that this has been going on for years and I have been putting some pretty serious medications into my body that didn’t need to be there. For years.

So now I am waiting to be contacted by another team to see how they can help me with my symptoms. The thought of having a second non-curable disease is weighing heavily on me and my wary body. There have been moments of weakness where my mind has tried to convince me to give up. To throw in the towel and let the cards land where they may. Mostly because fighting is hard and painful and exhausting.

I’ve been trying to find the positive in all of this and the only one that comes to mind is that I’m thankful I didn’t have this to battle when the girls were younger. I was able to play with them and enjoy active things with them as well. For now, that’s all I’ve got. I had to stop watching videos of people who suffer from Fibromyalgia because a lot of them do not have a high quality of life and I’m not ready for that just yet. Oh, and the ribbon color matches that of Sarcoidosis, so that’s nice. A twofer if you will. <sarcasm> So now I wait for a call to set up a meeting with yet another team to see how they can help me. ITP, Breast Cancer, Sarcoidosis, and now Fibromyalgia. Stick a fork in me, I’m done.

<<<<<<<<<<<<AN UPDATE ON THE ABOVE POST>>>>>>>>

Never mind….the doctor I saw, after reviewing my symptoms and the many questions that I answered, has said that I am close to fitting the requirements for fibro, but not quite there. So…..there’s that. I have since had another sarcoidosis flare in my skin and will be going back on meds to try and get it under control. But that’s a post for another day.

Author: britehope

I’m just a soul going through life trying to figure things out.

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