Update 020722

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

I had my follow up appointment regarding the endometriosis. The hormone that I was put on isn’t helping with my pelvic pain. In fact, the pain is only getting worse. So, we’re stopping the hormone because there is no value in taking the medication if it isn’t going to reduce my pain. I have an IUD so I have very little bleeding even without the oral hormone, so I don’t even need it for that.

What’s next? Well, I’m going to be scheduled for surgery. Going to have an exploratory laparoscopy done. What that means is that they are going to make 2 or 3 incisions into my abdomen that are about a centimeter long each and they are going to put a camera into my abdomen. They are going to look all around. What else they do will depend on what they see. This is the only reliable way to diagnosis endometriosis, so it is possible that I have been treating the wrong things for all these years. That would suck but I also understand that pelvic pain is a very nonspecific thing to diagnose. I just don’t think that it should take 20 years and 5 different doctors not achieving pain control of any amount before this is done.

If I have visible endometriosis, they will burn as much of it out as they can while they have the incisions already made in the abdomen. If there is no visible endometriosis, they are going to take a bunch of biopsies from as many sites as possible to send to pathology. Sometimes this kind of pathology testing shows endometriosis that is small and well embedded into the tissues. It will also test for a bunch of other things because the pathologist will be looking for abnormal tissues of any kind. Just looking into the abdomen can either confirm the diagnosis by seeing endometriosis or could generate a different diagnosis if they see some other tissue abnormality. Because there are things that just don’t show up on imaging.

There are risks to this, but there are also risks to not doing this. Having this procedure comes with the risks for medication side effects and reactions because of the anesthesia. It also comes with the risk for infection. Those two risks come with any type of surgery. Having abdominal surgery will increase my risk for hernias and prolapses which I am already at risk for because of the connective tissue disorder. It also creates a risk for having adhesions which is a type of scarring that can cause problems like chronic pain and bowel obstructions. However, not having this done means that I am trying to treat my pain without knowing what is going on and that is also risky. It means that I could be allowing a problem to get worse because I am treating it like it’s something when it’s not. There are a lot of risks to having the wrong diagnosis. I personally have had a lot of negative out comes over the years because I had the wrong diagnosis. I personally feel that making sure we know the diagnosis is right is an essential step.

There are a lot of unknowns to having this procedure done. I don’t know when it will be scheduled for. The current medical climate has made the wait times longer. I don’t know how long the recovery time will be because that will depend on what they see and what they do when they are in there. All of this is happening right as I am transitioning between contracts. I don’t get paid vacation or paid sick time. So, whatever time I need to take off because of this procedure will mean not getting an income during that time frame. Even though I feel that this is the best next step for me to take to ensure that I am getting the best possible treatment, it has created a lot of stress for me and I have been feeling that mostly in the way of having increased fatigue. That just makes everything harder.

This is how managing chronic illness always is. It is complex and makes your life messy when you need to have procedures done or need to make major changes in your medications. You can never known how your body will respond to any of this either. It is quite possible that having this procedure done will lead to enough physical stress to triggers flares. There is also the emotional part of it. What if the tests come back negative for everything? What then? It might sound strange, but the test results coming back with no diagnosis is my biggest fear in this. That would mean that I would be back at square one and trying to find the right diagnosis.

I’m hoping that the test demonstrates that it is endometriosis. Yeah, it sucks that I haven’t had successful treatment for 20 years, but I have found a good doctor who listens and who is really working with me to manage my pain. If it’s not endometriosis, I will most likely be looking for a new doctor. And the truth of it is that finding a good doctor is about 75% of the battle in getting good health care. I need a doctor that is knowledgeable, but willing to admit that they can never have all the answers. I need someone who listens and considers my experience as valid and real. I can’t have someone telling me that this shit is in my head or that I am exaggerating. I’m fucking done with that gaslighting bullshit. It has cost me too much already.

I’m done with the antibiotics for the strep throat. Have a few more days of probiotics left. My upper respiratory symptoms are resolved. So, that’s something that is going well. I’ve gotten the oxygen concentrator and have started the overnight oxygen therapy. The first week of that has been promising with a significant reduction in my head aches. It will take more time to know if it will also be helpful with my dystonia and muscle pain. But the truth is that even if it only has the head ache benefit, it is so completely worth it. I got my SCDs delivered but haven’t started using them yet. Hopefully they will also help with my pain. But they will help reduce my risks related to the blood pooling in my legs even if I don’t have any pain reduction.

I’m trying not to get frustrated with this meat boat that I am riding around in. I’m trying to take things as they come; each day for what it is. But that can be hard. I’m grateful for the supportive husband and daughter that I have. Having that kind of support is huge. There has been a lot of problem solving and trying new things. I’m hoping to get some more product reviews up here for you guys. It can help to have a spoonie perspective before you buy a product. And with any luck, I will soon be doing more with Zebra Pig. I have the things that I need to start doing videos. So, that might be a thing here soon. Will all depend on what the learning curve is for the recording programs and I’m not always the fastest when it comes to learning how to use a new program.

I have 2 weeks left at St. Joseph Hospital. It has been a wonderful place to work. They have treated me well. It comes with all the woes that nursing work comes with, but it also comes with great team work and social support. That unit is amazing. I will miss being there. I am also excited to see what is next. I don’t yet have my next contract ironed out and that is a source of stress for me as well. I know that I have time, but it is always stressful to make this transition between assignments.

Thanks for being here and hanging out with me today. Please, take care of yourselves!

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