060622 Update

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am just going to be giving an update on how things have been going in my life. Been a while since I did that.

This past week or so has been pretty hard. On 5/23 I had to call out for work because I was in way too much pain to be functional. I went to the walk in clinic. It was busy and took forever, but I got what I needed without any fuss and I love that about this clinic. They usually don’t give me a hard time about getting the things that I need to treat my chronic symptoms. In this case, my right sacroiliac joint was inflamed and causing me a lot of pain. I have sacroiliac joint instability and all the moving around will cause them to become inflamed at times which causes a significant increase in my pain. This is not a new problem. I’ve been struggling with this for years.

When ever one of the sacroiliac joints get inflamed I have to get onto a course of steroids and muscle relaxers. The steroids reduce the inflammation. The muscle relaxers allow the joint to slide back into its proper position. Once these medications are on board I usually have very quick relief. The down side is that the medication kicks my butt and I do nothing but sleep. I was able to tolerate working on 5/24 even though I was feeling really fatigued. Lucky for me, it was a really good night so it made things a lot easier. I then spent my three nights off pretty much being a vegetable. I loafed for the short periods that I was awake, but mostly slept for three solid days.

The medications where done on 5/27 and my sacroiliac joint was pretty much back to feeling like my baseline. I worked on 5/28, 5/29 and 5/30. I had a hard night on the 28th. I didn’t have many emotional spoons available and that always makes a shift harder. But on top of that it was a really busy night that wasn’t well managed so I ended up getting a pretty crappy work load. Luckily, the other two shifts were not as difficult.

Sunday, I was exposed to lupines. A family member brought a bunch of them in for the staff and for the patient. I now know that lupines trigger my mast cell activation syndrome. By the end of the night I was wheezing and short of breath. I was itching every where but around my mouth and nose was the worst. My nose was running while feeling like someone had stuffed cotton into my nasal cavities. Even my GI system was protesting. Everything that had been in my intestinal track had been emptied out of it by the end of the night. Full bowel cleanse.

Because I just finished a course of steroids, I was reluctant to get onto another course of them. That’s the general treatment for when this stuff gets activated. But the steroids come with a lot of risks so I try really hard not to take them and try really hard not to take courses of them close together. So, I started off by taking a high dose of Benadryl. This did bring the reaction down into the safe range where my breathing was no longer being effected. However, not getting steroids meant that it was going to take much longer for my body to settle down from this reaction. So, I spent last week resting and recovering from the mast cells being triggered.

I was supposed to have my laparoscopic surgery this week to try to better evaluate the pelvic pain that I am having, but I was not able to get the time off from work and I can’t afford to call out again since I don’t get paid for my sick days. I’m still trying to get that procedure rescheduled but am having an uphill battle in that I cannot seem to get the surgery scheduler to call me back. It is super frustrating. I find it mind boggling how difficult it is to get time off from work as a nurse and that has only gotten harder now that I am a traveler. And it is insane how difficult it has been to communicate with the scheduler for the surgical department. I try to remind myself that they are also working with way too few people for the job they are being asked to do.

So, I have no idea when that procedure will actually happen and that is really frustrating to me since my pelvic pain keeps getting worse. I am pretty sure that the endometriosis diagnosis is not correct, but this is the procedure to determine that. And the doctors aren’t going to move forward with trying to find any other possible causes as long as they are convinced that this is what is going on. Pelvic pain is such a frustrating symptom to have.

About 25% of women have chronic pelvic pain. And most of the time, doctors aren’t able to sort out the cause of the pain let alone provide good pain management for it. I find this to be complete insanity. How is it alright for 1 in 4 women to be allowed to suffer like this? I understand that diagnosing pelvic pain’s cause is a real challenge because there are so many possibilities, but how is it alright to just label it as Chronic Pelvic Pain Syndrome and shrug while you give up on figuring out what’s causing the problem. That’s insanity.

I have been suffering with chronic pelvic pain for 25 years and I have to constantly fight with doctors to try to find any kind of relief. I am so disgusted with this. Last year, I had a doctor who saw the endometriosis diagnosis and then just told me not to worry because after menopause my pain will start to reduce. For most women that’s at the age of 51. So, this doctor’s solution was to just wait for 11 years and hope that my pain went away on its own. What the actual fuck kind of care is that?

I have been trying to figure out what’s next because being a nurse is getting too hard and it isn’t something that I am going to be able to do for much longer. It makes me sad, but the truth is that the work environment for nursing has become so toxic that I am having an emotionally difficult time doing the job these days. We are being asked to work with unsafe patient ratios and being pushed to take admissions during our medication passes. The acuity of the patients is only getting higher. All the while our supervisors are gaslighting us about how things are not that bad and how we need to be better team players to make things work better. It’s insanity.

I had a melt down after getting home from work a few weeks ago. That’s part of having autism that I don’t really like that much. But these feelings of being overwhelmed are happening more and more often. I am finding myself struggling not to have meltdowns while I am at work. I feel like it’s only a matter of time before it happens though. As both a patient and as a nurse, I have lost my faith in the healthcare system and that has left me feeling really lost and broken. How things are being managed now are not sustainable and no one seems to be paying attention as the hospitals are crumbling down around us. As a nurse, I can walk away and find another kind of work. But I need these medical facilities as a patient. It really scares me to think about where we will be in 5 years.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

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