Welcome back to Musings of an Arthritic Artist! Today's post is going to be a bit different than my usual posts and my posts as of late.
Today I'm going to be doing a life update post. Basically, I'm going to be talking about what's been going on in my life.
Without further ado, let's get into the post!
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So, it's been a while. I haven't written or posted a single blog post since April. And before then, I hadn't posted since April 2023. A lot has happened since then, so I'm going to get into that. Since I'm doing an update that covers summer 2023 to now, this will be a pretty long blog post, but please, bear with me.
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In July of 2023, on a personal family business trip, I began to have more noticeable balance issues. I've had balance issues on and off since I was a child, but it became more prominent. It became so disruptive that I began to require my sister's arm as a mobility aid. I told myself that I would wait it out, see what happened. See if it improved. If not, then I'd take further measures.
After about a month, it hadn't really improved. Right before mine and my family's showing of Blue Beetle (we ended up seeing it opening day, so August 18, 2023), I asked my mom if she and my dad could buy me a cane. I had already been looking at some on Amazon, and I had determined that I had wanted a foldable one.
I had actually been wondering if I would benefit from a cane long before this conversation ever happened. But when I'd first been wondering about it, I didn't feel as if my issues were severe enough to warrant one. But I had first began thinking about a cane in 2022 sometime. I didn't feel as if it was an immediate, pressing issue though, so I put that thought on the back burner.
Until August 2023 when I realized that enough was enough. We ordered a cane and two cane handle walking sticks the very next day. Both arrived on August 28th, and I began using them immediately. I began to see improvement with my ability to walk.
The design I liked came two different ways, depending on how you ordered them. One has the single top most canes are seen having. The other type had a rubber quad base. Due to the nature of my balance issues and the ability for them to stand by themselves, I decided to go with the rubber quad base cane.
I no longer needed to rely on my sister to help me walk. I could walk independently, not having to worry if there was someone standing beside me for me to grab the arm of in case I started falling over.
On September 1st, my mom decided to order me the other two cane designs of the exact cane I'd gotten, so I'd have 'options'.
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| Gladiola and Vincent, my two cane handle walking sticks |
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| From left to right: Flora, Kalil, and Izara, my foldable quad canes |
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Last December, my family and I went to San Diego, specifically to SeaWorld San Diego. San Diego has a lot of hills, and I was struggling to walk, even with the cane handle walking sticks that I was using. I remember sitting down and talking to my sister and talking about how a wheelchair would be very good at a park like that, and even the rest of San Diego due to the inclines. She agreed with me, and we were both looking at wheelchairs on Amazon, because she was wondering how much they cost.
Months later, I brought up the topic to my mother. We began talking about it. I mentioned how it would benefit me, and we both agreed that we would look into it.
During the first week of April, I went to see my primary doctor, and I asked for a wheelchair prescription. Turned it in to a local medical supply place and ended up picking up my wheelchair pretty much the day right before my family and I left on our June trip to Las Vegas and San Diego.
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| My prescription wheelchair |
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Another update is that I no longer have just one diagnosis. And many months ago, I figured out that I never had only one diagnosis. While going through my medical records earlier this year, I uncovered that around the time I was diagnosed with JIA, I was also diagnosed with infantile scoliosis. Specifically mild thoracolumbar levoscoliosis. This scoliosis was also found on an imaging test that was taken when I was seven, but I was never aware of this, nor were my parents. But I have a mild curvature in the thoracolumbar section of my spine that curves towards the left (levoscoliosis).
Earlier this year, I had been experiencing a lot of back pain. Pretty much on the daily. Every day from April 4th to at least May 30, I had back pain every single day. I also had knee pain daily during this time.
I saw the nurse practitioner for an adult rheumatologist in April. The appointment went okay, but I wasn't really pleased. I was prescribed methylprednisolone, despite having low inflammatory markers, and I didn't end up taking those steroids. I ended up seeing a second rheumatologist.
In May, while seeing an adult rheumatologist who was supposed to be treating my JIA, I was diagnosed with fibromyalgia.
I ended up seeing the first adult rheumatologist again in June, the day after I got back from being out of town. After that, I am not seeing him again. I wasn't satisfied with the care I received there.
As for the second rheumatologist, the first appointment went relatively well, despite the rheumatologist pretty much telling me that my JIA diagnosis was a bogus diagnosis and seemingly doubting the doctor I received that diagnosis from. And then during that appointment, I was also diagnosed with hip bursitis and given two steroid shots, one in each hip. The doctor told me he wanted to see my medical records, because I was in the middle of trying to receive them from my pediatric hospital where I was being seen before.
The next appointment though, I was discharged from his office and told that my primary doctor could treat my fibromyalgia, completely ignoring the arthritis I have because he found 'no evidence of RA, AS, or any connective tissue disease' despite my JIA being a connective tissue disease.
I haven't seen him since because he dismissed me and told me to only go back if my symptoms really got worse. But if I see an adult rheumatologist again (and I will have to because my main issues are rheumatology related), I will not be seeing him or the previous rheumatologist that I saw.
He did, however, bring up a new issue that I had to address: a fast heart rate.
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In May, I had been prescribed four different things. Voltaren gel, for my knees, Celebrex, for my arthritis and fibromyalgia, Vitamin D2, and Duloxetine (Cymbalta), for my fibromyalgia.
I didn't take these, except for the Vitamin D2, at the time. That was because I didn't want to risk having an allergic reaction to any of these medications out of town, and it was also because I intended to have my very first alcoholic beverage in Las Vegas, due to turning 21 this year.
I began taking the Celebrex and Cymbalta about a week before my 2nd rheumatology appointment in July with the doctor who prescribed those. I stopped taking the Celebrex after 2 days because it caused me to get more heart palpitations than I usually get.
The Cymbalta was working for my back pain. Finally, I was getting up and not feeling back pain every second of every day. It was nice. I started with a 60mg dose, or 30mg, twice daily. Which, when looking at recommended starting dosages for fibromyalgia, seems a bit high, considering the starter dose is usually 30mg, and then increased to 60mg if the patient's fibro responds to it well.
I started to get side effects from the Cymbalta. I had the usual, expected drowsiness side effect for the first 2 weeks. And then, I noticed gum changes. My dosage of Cymbalta was causing my gums to recede. But because I had already been on it for a while, I couldn't just quit the medication, especially not after such a high dose. If I quit it cold turkey, I would risk major withdrawal symptoms due to it being an antidepressant.
After a while, I lowered my dose to 30mg, once a day, by simply taking one less tablet a day. I saw my pediatrician for this issue and my dose was subsequently lowered to a 20mg dose, once daily, which was the lowest dose I could possibly take.
After months of weaning off it, I finally stopped taking Cymbalta on November 3rd.
While I was taking the Cymbalta, I was told I had a fast heart rate by my rheumatologist and my pediatrician. I ended up getting a pulse oximeter to keep a track of my heart rate.
During this heart rate issue, my family and I had been wondering if it was being caused by the Cymbalta. I found out that it actually wasn't because my resting heart rate was 99 beats per minute for my first rheumatology appointment in April. My heart rate was 98 beats per minute when I was told by my second rheumatologist in July. My heart rate was 2 off from being considered tachycardia in April.
My heart rate was not getting any lower with the Cymbalta, but it wasn't causing the issue.
In September I saw a cardiologist for a fast heart rate. When my father asked if my symptoms could be due to POTS (Postural Orthostatic Tachycardia Syndrome, which my family and I had been looking at previously), I was told it couldn't possibly be that because my blood pressure didn't change from lying down to sitting up. Which is inaccurate because the POTS diagnostic criteria has nothing to do with blood pressure, but I didn't push the issue.
I was told that I'd have to have an echocardiogram to rule out heart disease, which was scheduled for about 3 weeks in the future. I was then told I'd have to have a follow up appointment to go over the echo results.
That appointment was originally scheduled for January because there were no sooner openings, but I was assured that there were always cancellations, so it'd be sooner than that. Sure enough, someone cancelled so my follow up was the day right after my echo.
That next day I walked out with a diagnosis of inappropriate sinus tachycardia. IST is a type of dysautonomia. Dysautonomia is the dysfunction of the autonomic nervous system, which controls involuntary body responses, like heart rate, blood pressure, respiration, digestion, body temperature, metabolism, etc. My echocardiogram had come back normal. I had no enlargements or other abnormalities.
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During this year, I have also seen a neurologist twice, after I was referred due to having hand tremors. I had a genetic blood test in August, but I don't have the results of that, so for now, I'm not really discussing the neurologist. Nothing has been found, aside from the fact that my balance issues have been clinically confirmed. And I had multiple tests done to try to find the cause of the tremors and balance issues, to no avail so far.
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I have been too busy with medical appointments and tests this year to really be able to post as much as I'd like, especially because I haven't really read many books (perhaps only 6-8 that I would consider reviewing here), nor have I really watched many movies.
I had at least 12 or so doctor's appointments this year. Had to do 3 MRIs, 3 EKGs, 3 X-Rays, an EEG, an EMG/NCV, an echocardiogram, 2 genetic blood tests, and 4 standard blood tests. All starting in March and ending in September. That's about 5 appointments and/or tests per month. So I've been slammed this year.
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I've been meaning to be more active on my blog, and I hope to be more active this month and next year. I have a lot of reviews I can post here. For books, TV shows, and movies, and I'm really excited to post them. I'm also currently reading some books that I can review here. Overall, I'm really looking forward to continuing my blog because I have been active for too long.
