As many of you know I’ve encounter my share of medical issues and challenges that have all been discovered or transpired because of treatment for another issue.
In 2010 Hashimoto’s Thyroiditis Disease was diagnosed during a physical after pneumonia that went sepsis post surgery for a herniated disc in my neck. The pneumonia was triggered by a staff infection picked up in the hospital.
In 2016 Fibromascular Dysplasia (FMD), a very rare vascular disorder, was diagnosed after a trip to ER for what I thought was an adverse reaction to anti-viral medication for shingles. Turned out to be a renal infarct, another very rare disorder.
In 2018 Microscopic Colitis was diagnosed after severe boats with diarrhea and stomach pain that escalated for months till I could barely eat, leading me to the gastroenterologist.
Turns out, this was caused by the baby aspirin prescribed for the FMD.
Added to the pleasure of 2018 was the need to have half my thyroid removed because of a possible cancerous nodule which ties to the Hashimotos. Thank God it was benign.
2019 was spent trying to get control of the Microscopic Colitis because I couldn’t take the medication given to help settle the inflammation caused by the baby aspirin, which by this point was reduced to every other day every other week. With the help of a nutritionist I was able to get my gut back in order and so far I’m holding my own with the FMD thank God.
By 2020, by the grace of God, despite the pandemic, things with my health seemed to settle down. AND, I even found a new creative outlet, chalk art, which has been my saving grace as far as keeping me grounded and sane.
BUT, 2021 is turning out to be quite challenging once again.
Contracting COVID in January/February took me some time to completely bounce back from. Then a breast cancer scare in August had me on edge until the biopsy results were in. It was benign thank God.
AND NOW, I’m once again traveling a road of a medical conundrum that’s got my family doctor and an immunologist a bit stumped and a little bit at odds.
Early in October I had what obviously appeared to be cellulitis on the back of my leg. I assumed I got bit by something, but had no clue by what and when. My family doctor sent me to the ER because they were concerned it could also be a blood clot.
SO, I took a half days vacation and sat in the ER for 4 hours until I could be seen. At which time 2 physicians came in to check the red blotch on the back of my thigh. The first doctor wanted to run blood work to rule out Lyme and also an ultrasound to rule out blood clot, just to be safe.
BUT, the second physician, who specialized in Medical Toxicology saw no need and was convinced it was cellulitis.
He also was convinced although I had a noted allergy to penicillin, because it dated back to my childhood and I had no idea what the allergy was, I would be just fine taking Keflex, an antibiotic in the penicillin family.
Me being a trusting soul didn’t question his logic.
Note, the immunologist concurred that his thinking was indeed correct. Considering what happened next, I beg to differ.
The dosage was 500mg 4 times a day and by the time I got to day 3, my entire body was riddled with inflammation. I could barely get out of bed. My hands, neck, shoulders, knees and feet were so swollen I could barely function.
The family doctor told me to stop the Keflex and put me on Doxicycline, but never did anything to address the inflammation, assuming once I stopped the first antibiotic I would see signs of relief.
Boy were they wrong.
This all started on a Friday and by Monday I was no better. A phone call to the family doctor eventually lead to me having to be seen by the family doctor who put me on steroids, the step down pack.
The first 2 days I saw signs of relief, but by no means was the inflammation gone. Once the steroid pack was done the inflammation reared it’s ugly head even worse than the first time. By the following Monday I could barely walk, or even sit down and getting dressed took at the minimum 20 minutes.
I called the doctor’s office the minute they opened and it was decided I was having a reaction to the second antibiotic, so I was told to stop that one and they once again put me on another step down steroid pack.
The same pattern repeated itself. Saw signs of relief initially on the days when the dosage was at it’s highest, but by the time the steroids were done, my entire body was once again inflamed.
And this time worse than before.
It even hurt to walk my feet were so inflamed and I couldn’t bend my knees at all. Getting up and down was beyond painful. And my hands looked like I had been in boxing match they were so swollen.
Since the doctor couldn’t see me I was told to go to urgent care.
Needless to say the provider I saw was not thrilled to have the family doctor kicking me to them when they were suppose to be “taking care of the situation.” BUT, he could see how bad the situation was, and that I was in a lot of pain.
SO, having listened to my story closely, and acknowledging that the days I saw the most relief were the higher steroid dosage days, he decided to try 6 days of steroids at 20mg.
This certainly helped, but after the steroids started to wear off I was back to having pain, especially in my neck and shoulders, which kept me from sleeping. And my hands were still swollen which impeded my every day functions.
To say I was frustrated is an understatement, so I decided it was time to seek out an immunologist, hoping they might have more insight into why my body could be having such a reaction, and what to do next.
I was able to get a same day appointment with a new immunologist in the area and I’m grateful I went to her. She was not convinced that I had a reaction to 2 antibiotics. As a matter of fact she felt it had to be something else and tested me for Lyme’s disease.
On the other side of the coin, my family doctor stilled believed it was just my body reacting to the meds, but felt it was well worth testing for possible rheumatology issues.
SO, off to the lab I went, twice in one week.
In the meantime I had to just wait it out because neither provider wanted to put me on any more steroids until they got some further details. Fortunately, although there was still inflammation, it was nothing like it had been. I was able to function, not perfectly, and certainly not without pain, but I could function.
The first provider to get back to me was the immunologist. The Lyme titers were negative, which meant the reason as to why was still unanswered, but she knew I was still in pain and decided to put me back on steroids, 10mg for 30 days, which did indeed help, but when I saw her next it was easy to see my hands were still swollen in the knuckles.
It was then she decided to try a burst of steroids with a step down, 40mg for 5 days, 30mg for 2 days, 20mg for 2 days, then 10mg for 2 days.
Finally we hit the jackpot, by the weekend I was finally starting to feel like me again and able to do things I hadn’t been able to for the past month.
I also heard back from my family doctor regarding the rheumatology blood work. Although it came back positive, they saw no urgency to get me in with a specialist, so I won’t get any further feedback in that area until March when I could get an appointment.
SO, after more than a month of back and forth and on and off again steroids, I can say I’m feeling better, thank God, but no confirmation as to whether it was just the meds that caused the problem, or if they triggered some underlying issue.
AND, although I have a follow up with the immunologist, I don’t know what more she can do because she’s not the one that ordered the rheumatology blood work.
For me though, all that matters is I am doing better and I not only know 2 more medications I have a sensitivity to, but that I do most certainly have an extremely sensitive system, and regardless of what a doctor says, I need to reinforce this. The older I get the more sensitive I am to medications and it’s up to me to be my own advocate because the medical professionals only want to dish out the standard fix and not think out of the box.
Don’t get me wrong, I’m extremely grateful for all the professionals that helped me through this, but it was one of those professionals who blatantly ignored what I said which in turn created this mess.
At least that’s the way I see it.
SO, in conclusion, question everything, especially when it comes to your health. AND, by all means be your own advocate. After all, you know your body and how it ticks better than any else. And if you don’t, you should or your situation could be worse than the one I just traveled.
© Mariann E. Danko and Waking the Woman, 2021. All rights reserved.
Goddess Masthead © Pamela Danko-Stout and Waking the Woman, 2021. All rights reserved.
Clip Art Courtesy – ©123rf
Lab Work – booblgum
Confused – harunatsukobo