Earlier this year, I wrote a blog post called Always at the Doctor’s Office because it seemed like I had been spending an increasing amount of time there.
That blog post covered January to the end of May of 2019. This blog picks up where the first one left off. The main reason I am writing this is to track how often I go to the doctor, as well as how sick I had become before going to one.
Sometime in early July, I used telemedicine for the first time ever. I had yet another sinus infection, and has been trying to fight it off. My bad immune system was eventually overwhelmed, and I had to seek out medical attention.
My health insurance covers telemedicine – where you contact a doctor from your home, and the doctor calls you to hear about your symptoms. The “clinic for the poor people” had been hit or miss when it comes to scheduling appointments. So, I tried telemedicine.
It turns out that sinus infections are one (of many) things that the doctors can diagnose over the phone. I’d had more sinus infections than I can count, so I knew exactly what it was. The doctor was nice. She contacted the pharmacy of my choice and told them to fill my prescription for a “Z-pack” (the generic version).
I do pretty well on that antibiotic, so I knew it would work. It also knew it would make me extra tired not only while I was taking it, but also for at least a week after that.
On July 22, 2019, I wrote on Mastodon: “I’m over here, taking some CBD, because I did a whole lot of cleaning today and my fibromyalgia is making my muscles hurt now. CBD stops the pain. I’ll still be sick tomorrow due to allergen exposure. There are other drugs for that.”
On July 26, 2019, I went outside. At the time I am writing this blog post, I don’t remember what it was that I went outside to do. The very next day, I wrote the following on Mastodon:
“Yesterday, I went outside. Long story short, this fucked up my fibromyalgia, and I ended up in a whole lot of pain for the rest of the day/night.”
“Today, slept in. Still not recovered yet. So, I have to spend a bunch of time trying to get my body to be functional enough to do some paid work. It’s annoying.”
On August 7, 2019, I had a doctor’s appointment with my rheumatologist. The purpose was to see what the results of the blood tests were. Based on the results, I was told that I do have the RH factor, but do not have any signs of rheumatoid arthritis. This is good news, because rheumatoid arthritis eats your cartilage and makes it increasingly difficult for your joints to move as they should.
The unexpected news was that I didn’t actually have any other type of arthritis, either.
The bad news (which I was honestly expecting) was that I definitely had fibromyalgia. I was prescribed a low dose of a pain medication, which I started researching on my phone while still in the doctor’s office. The pain medication was not an opioid.
It also wasn’t something specifically made to treat fibromyalgia. There doesn’t appear to be any medication that is specifically designed for my disease.
I’m cynically figuring that the reason is because the majority of people who have fibromyalgia are women, and modern medicine has a terrible track record when it comes to not only ignoring women who tell the doctors that they are in pain, but also in actually treating their pain appropriately. Either that is the reason there are no drugs designed to treat fibromyalgia, or the pharmaceutical companies don’t think women who are in chronic pain are going to make them a significant amount of money.
If I remember correctly, the drug I was prescribed is one designed to treat depression and anxiety. I have neither of those, and I told that to my rheumatologist. All he could say was that this drug has helped some patients who have fibromyalgia.
So, I scrolled through my phone, doing preliminary research about the medication I was being prescribed. Right away, I found that two of the inactive ingredients were coconut (or derived from coconut.) I am allergic to coconut, so there was absolutely no way I could safely take this medication.
I pointed that out to my rheumatologist. “You don’t know all of my allergies,” I explained. He agreed, “You’re right. I don’t.”
My rheumatologist means well. It’s not his fault that he doesn’t have any other options for me. When we were done, he recommended that I seek out my general practitioner for help with fibromyalgia (instead of him). We both agreed that he had done everything he was able to for me.
On August 20, Fall pollen season started. I start struggling when the pollen count hits 7.0 or higher. I don’t bounce back until long after a pollen season ends. There is no way to know how long it will last.
On August 30, I realizes that I had lost two pounds since the end of July. That brought me to a total of 50 pounds since I started trying to lose weight. That effort began in 2017.
The weight loss had been increasing, in part, because I have a history of getting really sick and losing too much weight, too quickly. I weighed myself that day because I had gotten sick, again, and had been sick for a while. What caused it? There’s no way to know for certain, but going to doctor’s offices tends to result in me getting sick.
Little did I know that this was the start of a long, lingering, sickness that was affected by multiple factors. In short, my terrible immune system was already under attack.
On September 5, 2019, out of the blue, my fibromyalgia decided to flare up at the two points on the back of my shoulders. This was new! It was quick, and strong, and felt like very localized electrical shocks.
Fortunately, my bottle of CBD was right there on my desk and within easy reach. I used some, and waited for it to kick in and stop the severe pain.
At the time, I assumed that this was my body’s way of reminding me that I’m trying to do too much while the pollen count is too high. It was 9.0 that day, and had been in the nines for more than a week straight.
The reason I am doing too much is because I’m desperately trying to make money. I’m a freelance writer who gets paid to post things on other people’s blogs. Freelance writers don’t get paid sick days. We either get the work done, or we starve.
On September 6, 2019, I posted the following on Mastodon: “Right now, I am using a heating pad across the back of my shoulders (sort of) because I moved and my fibro flared up there. Also using a straw to finish my iced tea so I don’t have to tilt my head to drink it. I have an acupuncture appointment in a few days.”
The pollen count that day was 9.0 (again). When the pollen count hits nine, it affects people who don’t even have allergies. For me, days where the pollen count is at nine are days where I’m in horrific pain. In the past, it was mostly in my sinuses. This year, the inflammation caused by pollen exposure had started triggering my fibromyalgia.
On September 10, 2019, the pollen count went down to 7.3. This is not good for me, and I would struggle while on the way to and from my acupuncturist’s office. I don’t have any memory about what we talked about before starting treatment, or what points she put needles in. This is what happens when I’ve been sick for too long from a too high pollen count, without time to recover.
This lack of memory thing is referred to as “fibro fog”. It makes people like me forget most or all of the things that happened while we were in pain and struggling. I do remember that I took an excellent nap on the acupuncture table, and a really long, good, nap after I got back home.
On September 18, 2019, I made the mistake of eating food from a local sandwich shop that does have gluten-free bread. They make tasty subs, and their workers are trained to put on a new pair of gloves before touching the gluten-free bread.
Subs made with gluten-free bread are made in a separate area, far away from where the “regular” (full of gluten) bread is made. This is admirable, and I’m happy they do that.
There’s just one problem. When the worker is done carefully cutting the gluten-free bread in a safe area, and putting the meat on it, the worker then hands the sandwich to the worker who puts on the veggies (and condiments).
That worker has been handling “regular” bread all day, which means that the veggies are cross-contaminated with gluten. I got really sick after eating the (so-called) gluten-free sandwich from this sub shop. Exposure to gluten is painful, and really messes up my digestive system. It takes at least a week or two to fully get out of my system, no matter what I do.
This is when I decided to become extraordinarily picky about the restaurants that I am willing to eat food from. I do this in self-defense. if they don’t care enough to prevent me from getting sick, then I don’t care enough to give them my money.
On October 4, I wrote on Mastodon: “I’ve been sick for about… two months or so now. Starting to feel better. So, if you’re wondering why I’m responding to old toots… that’s why. I cannot keep up with this world.”
Toots, for those who do not know, are what posts on Mastodon are called.
Also on October 4, 2019, at around 5 in the morning, I wrote on Mastodon: “Gonna go to sleep for a while. If I feel ok after I wake up, I might attempt to do some Inktober art. I no longer have the energy to do a “one thing every day” project, so I’m just gonna do whatever I can, on my own timeframe. Blame it on the fibromyalgia.”
I remember being very sad about writing that toot. In 2017, I was able to complete one tiny pen & ink drawing, on a specific theme, every day in October. In 2018, I only was able to make it about half-way through the themes. This year, I was seriously struggling to do any art at all.
All of my energy was going towards sleeping in the hopes of feeling better, trying to get my body to function properly and actually be able to move, and desperately trying to get paid work done. I was exhausted, and starting to get scared that from this point onward, my body would continue to decline.
I had a couple of dental appointments in October. One was to remove a broken cap that my dentist put in not long ago. I guess he, or one of the dental technicians, did something wrong with it. The good news was that I wasn’t being charged any money to have them replace it.
The process required me to have the old cap removed – which is unpleasant but something I can tolerate. I also had to have a mold made for the new permanent cap, and had to get a temporary cap put in. I was exhausted when I left because the physical experience was not painful when it was happening, but set off my fibromyalgia after I left.
The temporary cap greatly limited what I was able to safely eat – and that’s before considering all the foods I cannot eat due to food allergies. I lost some weight in the previous month because I was really sick, and then lost more waiting for my permanent cap to be ready.
The permanent cap was put in a few days before my husband and I were scheduled to leave for a short vacation. It is unpleasant to have a temporary cap removed, and then to have gums already irritated by dental work to have a permanent cap put on. This left me exhausted because all of that pounding on my jaw triggered my fibromyalgia
Fortunately, I got lucky and was able to mostly recover by the time my husband and I were going to take a short vacation. We saved up our money and decided that this year’s anniversary present would be a trip to LA to see The Who at the Hollywood Bowl, followed by a trip to Anaheim to visit the Star Wars section of Disneyland. (Our wedding anniversary is not in October – but that’s when the concert was.)
To make this work, we had to give up on funding some of the home improvement projects that were in various stages of incompleteness. Nothing serious, just a few things that needed some work.
The concert was wonderful! It was an outdoor arena, at night, which meant that there wasn’t any pollen to worry about. There also wasn’t any smoke effects coming from the stage (which makes it hard for me to breathe). The bench seating was surprisingly comfortable.
Unfortunately, the air in LA was terrible, and my sinuses were on fire the whole time. I suspect this had something to do with the pollution in the air.
I’ll write a separate blog about Disneyland, but for now, I’ll point out that Disneyland lets people rent wheelchairs. For me, this was great and awful at the same time. Without a (manual) wheelchair, I would not have had the ability to walk from the gate to the Star Wars section. My fibromyalgia would have caused leg cramps and muscle spasms long before I got there. Shawn was able to push my rented wheelchair around, and that made visiting Disneyland together possible.
The awful part was that the experience made me realize just how disabled I am. I honestly needed that wheelchair. When I had to leave the wheelchair behind in order to get on a ride, I had a hard time walking just a few feet. When we turned in the wheelchair, I had great difficulty standing. The workers noticed, and gently suggested I could take my time.
Was this a glimpse of my future? How long do I have before I can’t walk?
On October 17, 2019, after returning from vacation, I wrote this on Mastodon: “I’m back from vacation. It was really fun. Unfortunately, I encountered gluten twice because restaurants can’t be bothered to give a fuck about people like me who get super sick from gluten. I’m never eating anything from any restaurant ever again.”
“Also, this trend of scented hotel rooms needs to die. My sinuses are still on fire from that.”
“There needs to be a law – nationwide – that FORCES food preparers to learn about allergies and cross-contamination before they can finish school/get a job working with food. If they fuck it up after that – and make even one person sick -they should never be allowed to prepare food for a living ever again.”
“And hotels should be FORCED to use unscented, allergy friendly, cleaning products. AND have allergy friendly soap/shampoo. It won’t happen, though, because no one cares.”
Guess what? It’s pretty much impossible to find safe food for me to eat while on vacation. I brought safe food with me, but it wasn’t enough to last the few days we would be away from home. In other words, after just barely recovering enough to go on vacation, I was now sick again.
The mobile home park we live in started tearing apart all of the roads within the park on the day we left for vacation. We returned to ripped up roads, construction equipment, and all the particulate matter and odors that come with it. The project was supposed to last three weeks.
A few days before October 31, 2019, I woke up with a sore throat. At first, I assumed it was allergies, and figured it would go away if I drank lots of water and took allergy medication.
Instead, it got worse. The throat pain reminded me when I had tonsilitis in 2017. The difference was that this time, the pain was mostly on one side.
When I tried to make a doctor’s appointment, I was told that my regular doctor did not have any appointments open. The receptionist was able to get me an appointment on Halloween with a doctor I’d never seen before. I took it!
The doctor was very nice, and seemed knowledgeable. He looked into my throat, nose, and ears, and declared that everything was red. His diagnosis was strep throat, which would require an antibiotic.
I was exhausted, and in pain, but I sort of remember what the doctor told me. He said we could do a strep test, but that would cost more money. From what he could see, he was very certain it was strep. I was going to end up with the same antibiotic anyway. I opted to trust his judgement and skip the strep test.
The doctor said I would need take two antibiotics a day until I ran out. I should call for another appointment if the medication didn’t help.
Previous to planning our anniversary vacation, we had considered going to BlizzCon. It was a good thing that didn’t happen, because I wouldn’t have been able to get a doctor’s appointment before going and would have spread strep throat to everyone who attended.
On November 8, 2019, I wrote on Mastodon: “Hi people! I haven’t been on here much lately because I’m trying to see how quickly I can get my freelance writing work done. While on antibiotics. Because I have/had? strep throat. Through daylight savings time. I don’t recommend doing this, but I’m still gonna give it a try.”
I was pushing myself to try and get as much paid work done as possible, in part because I was concerned that I wouldn’t be able to make enough money to help pay the bills if I rested. With all my chronic illnesses, it was impossible to feel “good” anyway.
I was also starting to worry that the Trump Administration would – by going through the courts – rip away the only chance I had at getting affordable health care. At the time, the Republican’s Obamacare case was heading to the Supreme Court. I’m always at the doctor’s office. Lack of access to affordable health care would kill me. So, I tried to make what money I could before that happened.
It’s not the best idea, and I wouldn’t recommend other “spoonies” try it. But, I know that many of us are afraid right now about what could happen when we can’t see a doctor anymore (or pay for medications, or blood tests, or whatever else we need).
Most of November was blurry. I was exhausted from the antibiotics. Somewhere along the way, I re-read the bottle and learned that I was supposed to have been taking one pill three times a day, not twice like my doctor said. Perhaps I had the generic, and that made the dosage different? I felt like I was failing at taking my medication.
There was another thing that was stealing away my energy. The mobile home park construction project did not end by the three week mark we were promised.
It took six weeks to complete. Every day, I was exposed to more allergens and dust and dirt. Shawn developed a bad cough. Our portable air conditioner, and my air cleaner, were no match for the ever present construction crew.
On November 21, 2019, I wrote this on Mastodon: “What was supposed to be three weeks of construction work very close to my home had turned into six weeks. There is no end in sight. This is my life now.”
“I am physically overwhelmed by the constant dust (and other particulate matter) that is constantly in the air now. A neighbor next door did some additional work the other day. Two more nearby are making indoor and outdoor renovations.”
“I am tired of being sick and exhausted from stuff I cannot control.”
I was on antibiotics for the majority of November. It took a while longer for my body to “bounce back” to use a phrase that I’ve heard healthy people use after completing antibiotics. I did not “bounce back”. I slowly crawled back towards what passes for “healthy-ish” for me.
On December 19, 2019, I was fortunate enough to get to have an acupuncture appointment. I hadn’t been there in a couple of months, and really needed to go. Why didn’t I go sooner? Because I was too sick to do so.
Acupuncture can help treat the symptoms of several kinds of illnesses. This time, I was there to deal with stress and chronic pain. My fibromyalgia had been acting up a lot, and I figured it had something to do with inflammation. As someone with both allergies, and fibro, I struggle with that.
My wonderful acupuncturist knew just what to do, as always. I was able to take a really good nap after the needles had been put into the appropriate locations. My husband and I took a Lyft to the office, but when I was done with my appointment, I was able to walk home.
My acupuncturist recommended I get more liquid Vitamin D3 from her (mine had run out). She also said I should stay away from sugar, which causes inflammation. For me, dairy does that as well.
Shawn went to visit with his family on Christmas Eve, and returned home on Christmas day. I love his family, but their house is filled with allergens. I’m not saying their house is dirty – it is probably cleaner than our home is.
They typically get a real Christmas tree, and I am allergic to that (no matter if it is pine or fir, my body stopped being able to tell the difference between them a long time ago).
They have multiple (adorable) little dogs, and chickens in the backyard. Celebration can sometime include grilling on the patio, on burning wood, that makes me sick. Or, it includes food that I cannot safely eat due to my many food allergies. Their home is often scented by candles which make me cough.
In the past, I was able to drive out there on Christmas day, and then return home. It got to the point where I was so sick after visiting that driving was difficult, and I was exhausted. I could not take Benadryl until after safely arriving home.
As such, I don’t visit their home on or around Christmas anymore. I am extremely lucky that they understand. They drove Shawn home on Christmas day, and brought both his and my presents with.
I honestly love everything they got for me. Soft pajamas and slippers, an electric throw to keep me warm. Fuzzy socks. “Spoonie” things! The Christmas scents clung to the presents, and all clothing needed to be washed immediately. I was sick for days afterwards, with burning sinuses.
This isn’t their fault. Most people can safely handle all the scents that come with Christmas, and they have the right to make their home smell however they please. If my immune system was better, it wouldn’t be a problem.
I’m going to be optimistic and assume I won’t get sick – again – in the last remaining days of 2019. If it happens, then I will update this blog post.
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