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I haven’t shared much about my health recently, other than on Instagram, mainly because there hasn’t been much change. We’re still in limbo.
I’m still spending my days too exhausted to get much of anything productive done. I find myself falling asleep after simple tasks like taking a shower or writing one blog post.
Sadly, all of the rest doesn’t seem to have much of an impact on how I feel. As time goes on, I think I’m getting used to feeling this way more than I am feeling better in any real way.
That said, I’ve pretty much decided that I want to increase my activity level some and see how I feel. I made it to a concert last week and I’m planning to go to a 2-hour event in LA next week.
I’m trying to go for more walks and do a few things around the house like help with laundry. Don’t worry, I don’t venture out without Brian. I am well aware of how weak my muscles are right now and his support is usually needed.
It makes me feel better emotionally to be able to contribute to our household, even if it’s in small ways here and there. I had no idea how useless laying in bed would make me feel, so I’m grateful for the small instances where I can feel a little less like I’m letting my family down.
It all exhausts me and I have to rest for a quite a while afterwards. However, I can’t just sit here forever hoping I will get strong again. I have to make sure I still have muscles left to re-gain their strength!
Last Week’s ER Trip and Abdominal CT
Last week, I landed myself in the ER because of intense abdominal pain. Fortunately, my pancreas, liver, spleen, kidneys, adrenal glands, uterus, lung bases, stomach, small bowel, large intestine, peritoneal cavity, appendix, abdominal aorta and inferior vena cava all look good on the CT.
That was a huge relief because I’ve been fearful of permanent damage to my pancreas after having pancreatitis last year. The CT showed it was completely back to normal.
The only thing the CT showed was possible constipation? Not sure what that is about yet, but the ER doctor recommended seeing a GI doctor, which I’m already on the waiting list for.
Since I was given the information that those organs are healthy, I have been sitting quietly with my body to get more in touch with what I’m feeling. I believe that the abdominal pain I feel is involuntary muscle contractions. When the pain is more intense, so are the muscle contractions.
It has me wondering if the leg pain is also related to muscle contractions. I’ve realized if I can keep the muscle contractions calm, not only am I in less pain, but my digestive issues dissipate too. So that’s something!
I have been hovering between 104-105 pounds for a few weeks. I’ve finally gotten up to 106 and holding strong for a couple days. I hope to keep gaining a pound every few days.
An Ear Infection Too
This week, the ear pain I’ve had for a few weeks intensified to the point where I can’t concentrate so I went to the local health clinic thinking I had an ear infection. She said my ear is red and prescribed antibiotics. I’m about 42 hours in since my first dose and the pain hasn’t eased up.
It does cause me concern that I don’t actually have an ear infection and that the pain is something else. I have had A LOT of ear infections in my life, and usually after about 24 hours of antibiotics, the pain starts to let up.
In the past, I may have assumed that the antibiotic they gave me wasn’t working (I was on amoxicillin constantly as a child and developed a resistance to it) and ask for a new one. However, I’ve never been on this particular antibiotic before, so it should work if there is a bacterial infection, right?
My fear is that my thyroid nodules have grown and are causing referral pain to my ear, which is a possibility. If the ear pain hasn’t eased up by the 72 hour mark, I may talk to the doctor about discontinuing the antibiotics. However, I’m hoping the antibiotics work and this pain will go away!
Next Steps: More Waiting
My next appointment is to have an abdominal ultrasound and an ultrasound of the soft tissues on the sides of my neck on 9/11. Lucky me, I get to have my wisdom tooth extracted the day before too.
The abdominal ultrasound isn’t that important after having the CT, but I’ll be curious if the findings match. The neck ultrasound is to make sure the lumps my doctor feels in my neck are swollen lymph nodes and not something else.
My internal medicine doctor is still working on getting me in to see an endocrinologist. She was supposed to finally have the office manager send everything over to the endocrinologist yesterday, so I’m praying they book me an appointment soon.
After going down the Google health research rabbit hole one too many times, I’ve decided that I’m going to wait to see the endocrinologist and go from there. I’m tired of chasing answers.
My symptoms could indicate the need to see several different specialists to rule things out. There could be a lot of different causes. However, the one fact we know is that I have large thyroid nodules that aren’t caused by hormone imbalances or antibodies.
I have a tiny little neck with how skinny I am right now, and those growths could be pressing on all sorts of things, causing pain and weakness in any part of my body. Our nervous system is pretty amazing that way.
I have also read that thyroid issues can cause autonomic dysfunction. Since I do have neurocardiogenic syncope, it’s possible that the thyroid problem is making my neurological symptoms worse than normal.
So I’m going to focus on having faith that by addressing my thyroid problems, I will improve all of the issues I’m having that seem unrelated. I don’t know that for a fact, of course, but I’d much rather be dealing with just one new issue that can be corrected, so that’s what I’m going to focus my thoughts on.
Since we have exhausted all of our other options, we’ve decided that we’ll proceed with the biopsy if that’s what the endocrinologist recommends. If it’s cancer, we’ll learn about the treatment options and go from there.
Even if it’s not cancer, the nodules may have grown to a size where they’ll have to be removed anyways. We’ve followed the functional medicine doctor’s protocol for shrinking thyroid nodules and I don’t feel any positive change.
I still have trouble breathing. I still have food get caught in my throat when I’m eating. And I have more pain in my neck now.
In addition, I feel like I can see the nodules more now. Of course I’m even skinnier than I was 2 months ago, so that could be the explanation for the visual change.
I believe this is the one that was measured at 3.5 cm on July 17.
You can really see them when I swallow. I’m curious what imaging will show.
I’m going to try to write a lot more about how I’m feeling and what I’m going through. Not only do I want to make sure everyone who wants to know what’s going on with me has that information, but it’s therapeutic for me as well.
Some of the updates might be positive and full of optimism. Some of them might be angry rants. The range of emotions I go through some days is pretty crazy.
I hope that sharing my experience can help all of the other people who are going through a similarly frustrating health challenge. I want you to know that you’re not alone.
There are days when I feel so completely alone, then I go online and read the stories that are shared with me. They touch my heart and make me feel like I’m not alone. I hope I can do that for you too.