Chronic Worth

Note: This is a re-post. The only thing changed is the title, which I did because the original title didn’t convey the sentiment the heart of what was being said. Many thanks to Julie from Mountain Made Crochet for helping me out with that.

When I first came back to the blog, I wrote about my awful experiences with various  medications for autoimmune disease. On some levels I feel a lot better without them, but my pain is getting a lot worse, and my energy never did make a full comeback. Back when I wrote that post, my mindset was leaning toward telling the rheumatologist that I didn’t want to try anything else after three different ones being so awful. Now that some time has passed, I am going to ask to try again, because the pain is not conducive to much.

It’s not a fun thing to have to choose between severe pain all the time, or the possibility of medication that makes things so much worse. However, I have things that I want to do, and there are a lot of other things that can be tried, so when I have my appointment in late June, I’ve decided to be brave and give it another go. Surely one of the many medications available will be tolerable by my supremely picky body.

What finally made me decide to continue with treatment is noticing that yet another of my fingers is starting to turn sideways. The incessant body-wide pain was already making me lean in that direction, but seeing yet another joint becoming disfigured is concrete proof to me that there is damage being done that needs to be stopped. In the meantime, I’ll be here as much as I can, and I’m hoping that it’s fairly often. Now that I’ve gotten this all out in the open, the next post will be about something other than my health. It isn’t something that I really like to talk about, but it is part of my life that will be popping up.

For several reasons, I’ve felt almost ashamed to talk about my struggles here. While I do not wish for health issues to make up a large part of this blog, I have decided to be a bit more open about it. There isn’t any shame in it, and that is part of my inner narrative that I am choosing to tell to shut the hell up. All the old voices of the past, and even in our society which cause us to place our value in what we produce, what we can do, how perfect we can make ourselves look can hush. It may be a little later in life, but it’s finally coming clear to me just how wrong those voices are and how to see myself differently.

Of course we should always be doing our best to have a life which is meaningful, but it can’t always be about how much money we make, what possessions we have, and all around being a poster child of materialistic success. Not saying that having nice things is bad, it’s just that as a society we all too often make those things the measure of worthiness in a person. Coming to a realization that I will not be rejoining the rat race has really helped me to see the intrinsic value of people, and it isn’t tied to what they do and what they own. While I’ve never viewed the world in that way, this is a whole new level, because those values had been embedded in me when it came to my own worth. So glad to finally have this fading, as I had a hard time fully loving myself and feeling worthy of acceptance. Here’s to all of us finding our sense of worth.

Do any of you go through this?

Slow Road To Recovery

My presence here has been off and on, mostly off, for quite a while now. Things have been pretty rough for a hot minute. My health issues hit an all time low last year. Increased levels of pain and fatigue sent me to a rheumatologist, sometime around May or June of 2019 After decades of unnamed suffering, it was oddly comforting to finally have a confirmed diagnosis of an autoimmune disease.

I left the doctor’s office with a prescription, which I began taking the following day. This is where things get really skewed, as far as keeping track of time goes. Over the course of several weeks on the medication, I was feeling worse than before, then had a severe reaction to the new medication and was instructed to stop taking it immediately, which I did. A few weeks later, I went back to his office and was given another prescription which I began taking that week and continued to take the new stuff once a week for several months.

As time went on, there were dose increases which barely helped the pain, but gave side effects which grew worse as I continued to take it. I felt sick from my head to my toes, then my GI system began to revolt, big time. Finally, unable to stand it anymore I called the office and am glad that I did, because once again, I was told to stop taking the medication immediately, which I did. After another few week gap with medications, I went back in to see him and was prescribed weekly injections.

The first injection went pretty well, with little side effects so I felt hopeful. Then came the second one, and oh boy it was bad, plus my GI system still wasn’t healed from the previous medication. I felt relieved that I hadn’t had the prescription filled yet because I at least wanted a break from it. My body just felt like it couldn’t take any more. Then, six days after that last injection I woke up with both injection sites red and angry, and my entire body just felt ill. Feeling like I might be due for a trip to the emergency room if things got worse, I called the drug company and spoke to one of their nurses, as it was a Sunday. She was great. Despite my hope that I could continue that medication, she told me that I could not, because I was having a serious reaction to it which warranted immediate cessation of it. Thank goodness, I began to feel better over the course of about five days.

Now, I have been medication free for somewhere around three weeks (I think) and am feeling better than I have in quite some time. I’m in a good deal of pain, and my fatigue is still there but not as bad as it was before stopping the medications. That makes three different drugs, all of which made me more ill than before. So, I called the doctor’s office and left a voicemail a few weeks ago, explaining what had happened and letting them know that I’d like a break from all medications at least until my next visit which is scheduled in June. Just days after this happened, Covid-19 really hit the United States and ground everything to a halt. I did not hear back from them, as I believe they’ve temporarily closed their office. That’s fine by me, because I’m not sure if he would try to convince me to try yet another drug, and I’m not there for it.

About a week ago, I was going through some old journals to try to remember when I had seem something pretty cool that happened outside, and while flipping through the pages I found that my first entry about the medications making me extremely ill was in mid July of last year, which means that this had been going on a bit longer than I thought it had. I knew that I had spent months being ill, to the point of being mostly confined to the bed or couch, but thought it’d really gotten bad in the Fall. Wrong! It’s easy to lose track of time when illness grinds your life to a halt.

I’ve been spending the past weeks recuperating, and while it is getting better I’m not quite there yet. All those months of being utterly inactive have taken their toll, plus my autoimmune illness is not being treated. My decision though, is that I am not going to try any new medications unless/until blood work looks like it would be a necessity. I’m sure that there are other medications I can try if the need presents itself, but for now I would rather deal with the pain and give the rest of my system time to heal. For the first time in ages, I’m engaging with things I haven’t been able to for the better part of a year and that feels great. Hopefully, I’ll be making it back here again before long. While I miss writing and art, I’ve been focusing on my physical and spiritual recovery. My entire life has been changed as a result of all of this, among other things and I’m enjoying the process of slowly finding myself again.

It’s my sincere hope that all of you stay well. Take good care, and be safe out there.

Sending love your way.