Two weeks ago, my best friend died. I lost something I truly loved and loved me back. My cat – the only consistent thing in my life for 12 years – was my emotional support animal. I miss him so much, because there is no one I can come home to when I’m having a bad day. His ending was a painful one, which really breaks my heart.
It’s been one year since I’ve been sick and disabled with strange symptoms.
April 2021 was the last (painful) walk I took on the beach, which is something I have always loved, enjoyed, and did often. The farthest walk I’ve done in the past year has been a trip around the grocery store. With my physical activity limited, I don’t get the endorphins I need, which obviously affects other things. Walking from the parking lot to the inside of the grocery store is about as much as I get on the days I feel okay enough to run small errands, most of which only require a few short minutes at a location. I haven’t even felt well enough to drive myself to get a pedicure in several weeks.
Last April was also the final time I kayaked, something I loved doing, because I love the outdoors and nature, and it gave me a sense of true freedom… and now I can no longer do that. Even if I get better eventually, I can’t do it alone, because I can’t lift heavy objects. This was only the beginning of losing my freedom and independence over the past year.
The beginning of July 2021 was the last time I rode a bicycle. I recall not feeling well, but many times a good sweaty workout helps. The bike ride was painful enough to know something was seriously wrong. I remember the left side of my body body being very weak and pushing my right leg with my hand, because I was so exhausted using the right side. Once I returned home, I realized I was running a fever. I also noticed I had heat rash under my breasts, which is something that never happens. (This is most likely the beginning of the E. coli infection.) At the very least, bike riding was the only sense of freedom I have had since I was a child. And now that is gone, too.
Much of my life was spent at the beach and outdoors, and with light sensitivity, I can’t be around sunlight for long. I don’t even like the heat anymore, and even with temps that I used to consider tolerable, I stay inside. If I could do it, I would seriously consider leaving Florida for a slightly cooler climate.
I am losing every fucking thing that I enjoy.
With all of this coming into a year of being housebound and sick, if I’m not already insane, I may be by the end of all of this. Here I was, expecting a resolution – a diagnosis – by now. What a fool I am.
Last week, I received a call from the neurologist’s office stating the doctor is out and will not be coming back. Their other neurologist isn’t taking new patients, and they don’t currently have a replacement. In other words, I have to completely start over with a new neurologist.
The only answers I do have are: I do not have MS (confirmed, but I read the “no bands” results myself online two weeks prior). Nor do I have (shocking!!) syphilis or some other STD I never had. Is it strange to check me for something I’ve never had or even had a discussion about? Or is this standard procedure? I guess I will never know, because no one can answer my questions. I’m seriously baffled, and I believe my primary care physician is, as well, because I think she expected a lot more extensive testing.
However, I was able to download the spinal tap results; but without a final report, I only know what the numbers are and how to google them. Some of my spinal fluid results were in the red – big huge reds. White blood cells – all of which related to cancer, infection, auto-immune disorders, and/or inflammation. And now with the neurologist gone, not a single person has answered my questions. Even when I sent the information to my PCP, I was told they couldn’t read it without a final report.
Using past experience, I expect seeing a new neurologist will run into summer. It doesn’t help that masses of people are moving to Florida and taking up limited resources, making appointments harder to get.
Round and ‘round, and ‘round we go… where are the answers? Nobody knows.
In the meantime, some things seem better for now. My mind, for example. I’m able to sit and type this the way I used to! My mobility comes and goes, and acupuncture helps with that. But it seems like when one area works out some pain, another area starts. What would make it move around? What neurological condition, infection or otherwise does this? I still have pain and puffiness deep under my left underarm, but I don’t think my lymph nodes are swollen. Since starting back to acupuncture this time around, it’s moving into my right side also, creating that tight band around my body that I’ve described in the past… that tight band that led me to believe I had MS, because it was the only thing I found that described the feeling I had.
Currently waiting on more labs from this week to check for white blood cells and the Epstein-Barr virus, which is another thing I don’t recall ever being tested for and should have been done by now. Also ordering more extensive neurological testing for nerve damage and who knows what else. One thing questionable on the lab results from this week is my urine came back high for ketones, but I am not diabetic (to my knowledge!). I have not heard anything from my doctor about it, but yesterday was particularly bad.
Right after my appointment with my PCP this week, I noticed I had a lot of pressure and pain, as if I may have a UTI. So I called and spoke to a random nurse on the phone, who said they would send me antibiotics and contact my doctor.
Yesterday, I really started noticing every single time I eat, I become weak, lightheaded, dizzy, tingling in my entire body, fullness in my stomach area, breathless. Like this blanket of weirdness comes over me, and I suddenly feel like I’m going to pass out. That was just a few bites of a peach popsicle. Today, it happened after eating a few bites of an apple, so I called the VA number, spoke to another random nurse I could barely understand on a bad phone connection. After describing my symptoms, she told me to go to the ER. But because her English was somewhat broken, I’m not exactly trusting her recommendation until I speak to someone that can communicate with me more clearly. I kept telling her the symptoms subside after a while and that I’ve already had some of the issues in question.
After all of that, as I’m typing this, I’m feeling my brain wind down again. This is why it’s so difficult to feel hopeful.
I’m beginning to think I have another infection, maybe E. coli again, because these symptoms seem really familiar. Except the last time, I was shitting my brains out 6x a day and in a lot more abdominal pain. Or maybe it’s some other infection or a combination of infections doing all of this. This article is one of the better ones I found regarding food intolerances and infections. I found section five particularly interesting, especially after getting symptoms after eating things I normally eat. After keeping a food diary long enough, this totally makes sense.
Or I could be diabetic, but I wouldn’t know, because no one has tested me since my 20s. On another note, I discovered that except for ER visits, no one has done a routine urine sample since 2019 until this week. I also found in my records from last summer that the ER radiologist noted a spot on my liver that should be looked at on an MRI but non-emergent. None of this was ever followed up.
Here I go again.
I’m sorry for your loss 💜