Update 121521

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today. I’m glad that you’re here.

I’m sure that you’ve noticed that the past week there has been an lack of posting on all my online locations. I simply have not had the spoons. I’ve decided to write an update today to explain the reason for the lacking of spoons and then I’m going to try to get some things into the cue for my various sites so that there will be fewer crickets.

For those of you who don’t already know, I work as a traveler nurse and my current assignment is that I am working on a medical surgical unit. It’s a fairly small hospital. We have a census of 22 patients on the unit I am working on, if we’re full, and we’re always full because of COVID. Lately, things have been a lot more demanding because of COVID. The ICU has been completely full, and the cardiopulmonary unit has been converted over to a ICU unit to deal with the COVID patients. That means that the I’ve been working on has been getting a lot of patients that would have either been going to the cardiopulmonary unit or going to the step down or even into the ICU. There’s just been a lot more acuity and with that, there’s been a lot more stress.

Yeah, there’s just not enough of us to deal with all the patients that we’re getting. We’re also getting a higher patient ratio pretty consistently. When I first started in this position, I was generally only getting four patients on the regular and now I am pretty consistently getting five and there is discussion that we are going to start having to take six patients on the regular and all of this is because of COVID and the effect that it’s having on the medical system. I know that six patient’s doesn’t sound like much, but it’s a lot. It’s just been so much.

I can’t really express well enough to everyone how much the COVID pandemic has shifted the way that we’re providing health care in this country. And how much demand that it’s putting on the health care staff, even if that staff isn’t directly taking care of COVID patients. Generally I don’t care for the COVID patients. Once in a while I get floated to the cardiopulmonary unit and I do take care of COVID patients but for the most part, I don’t get a patient with COVID. But I’m still being greatly affected by the increasing numbers of COVID cases that we’re seeing in this state.

The stress levels have been high. The job is physically demanding as a baseline and it’s only getting more physically demanding as the acuity of our patients continues to rise. I’ve been tired and a lot of my side projects have just not been getting done. So that’s where I’m at. And it’s likely to keep being like this for a while. What does that mean for my blog and my podcast and my Facebook page and all my other random projects? Well, the answer is that I don’t know. The reality is is that I can’t promise consistent posting because the spoons just have to be allocated to higher priorities. My online presence isn’t a source of income for me. So I have to save my spoons. I have to do more resting and recuperating so that I can work and make money and take care of people in a safe and appropriate way.

That being said, I do plan to continue to try to make regular posts and continue to try and have an online presence because this is an important thing for me. I find this therapeutic. I find it helpful to be able to talk about my chronic illness and to educate people on chronic illness. I just find all of this helpful. I hope to be able to continue to do this. However, it’s not likely to be as consistent as it had been previously. Just try to be patient with me if things get less reliable in how frequently I’m posting things.

As far as my medical stuff goes, I had my second appointment with my new gynecologist and that went pretty well. Wasn’t like a groundbreaking appointment. I had an ultrasound that showed that I now have some small fibroids in my uterus and while they in and of themselves are not a serious thing, it’s hard not to feel stress over it knowing my family history. My mom and her sisters have had to have their uteruses removed, because all of them have ended up with these huge fibroids that ruptured through the uterine wall and caused them a great deal of agony and problems. I can’t help but say: “Oh, great. Now I have fibroids and they’re likely to just call me grief.” I just wish that I could get rid of my uterus now and just be done with it because really, it’s just causing me problems. It’s causing me pain. It’s likely to continue to cause me problems and pain and those problems are likely to get worse. It’s just stupid that the system is so focused on reproductive viability that it doesn’t consider a lot of the other things. I find it frustrating.

I had my IUD changed and I’ve started progesterone orally so between the two I’m getting progesterone directly to the uterus and I’m also getting progesterone systemically. The risks for me with someone with Ehlers Danlos Syndrome Hypermobile type is that it is likely to increase my risk for developing osteopenia or osteoporosis. Anyone with a connective tissue disorder is already at risk for these because the bones are made entirely of connective tissues. If you take progesterone it increases your risk. That’s something that we’re going to have to keep an eye on and monitor for. Adding to my risk factor with this is that I had osteopenia in the past and it was because of the use of progesterone. So yeah, there’s that. I’m not super excited about this course of treatment, but my options have been pretty limited since nobody’s going to be willing to remove my uterus.

The other risk factor that comes with progesterone is that progesterone will make your joints more flexible, more lax, which makes it so that I’m more likely to have subluxations and dislocations. In my case, I feel like that risk is pretty well mitigated by the fact that I am getting into the stiffening phase of Ehlers Danlos Syndrome Hypermobile type. As we get older and as our osteoarthritis progresses, our joints actually start stiffening up instead of being as flexible as they were when we were younger. I’m still more flexible than the average person but I am definitely not as flexible as I was when I was 20.

I’m at a point where I’m feeling kind of stressed out about how all of this is going to progress but all I can do is wait and see. Just like it is with everything that is surrounding the world of health care and balancing your symptoms and trying to be functional without ending up with too many nasty side effects that just cause more problems to deal with. Yeah. Having chronic illnesses really sucks and it just makes it so much harder that we have to jump through these kinds of hoops before anyone will even consider the treatment that we really need. Because that’s why I’m taking the progesterone. If I don’t, they can’t say that it didn’t work. And I have to fail with progesterone therapy before they will even consider the next step. It’s craziness.

The next step would be doing a laparoscopic exploratory surgery to confirm the diagnosis because that is the only way that endometriosis can be truly diagnosed. How messed up is it that they have been unsuccessfully treating me for something for about 15 years without being sure that it’s what I have. So, there is a chance that the reason the treatments aren’t working is because I don’t have endometriosis. Yeah. Can’t even begin to explain the complex bag of emotions that brings up…

So I hope that all of you are well and thank you for coming and hanging out with me. Again, I’m sorry that I’ve been quiet lately. I do plan on continuing with my online presence, but please be patient with me in the future. And until we get to hang out again: Take care of yourselves and stay healthy. Bye!

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