Life with chronic illness is certainly never boring. (Well, it is boring when all you can do is watch Netflix, but you know what I mean.) While I’ve talked about my experience with specific illnesses over the years, I haven’t done a deeper discussion of living with all of my illnesses in a long time. In this post, I discuss living with chronic illness when you have: rheumatoid arthritis, fibromyalgia, postural orthostatic tachycardia syndrome, endometriosis, anemia of chronic disease, and asthma.

I am not a medical professional! I always include sources when I include medical information. These are indicated by (x) at the end of the sentence, and the x is linked.

Life with Chronic Illness 

Living with … Rheumatoid arthritis – This is my biggest condition. It’s my most serious illness, and it affects my life the most. I genuinely can’t figure out how to write this section because it’s such a huge part of my life. I personally have seronegative rheumatoid arthritis, which means I have RA without having a positive rheumatoid factor.

I still have all the same symptoms that a seropositive patient does: chronic inflammation, morning stiffness, fatigue, joint pain, etc. In the past, doctors might believe that seronegative patients do not have a case as serious as someone who is seropositive, but that is no longer considered the case (x).

I was officially diagnosed with autoimmune arthritis (originally psoriatic, but later changed to RA) in July of 2010. I had been on the waiting list for rheumatology for a few months, and I got off of it when I woke up one morning and couldn’t open my mouth more than 8 mm.

I deal with extra stiffness in the morning. For me personally, this also means some morning pain. It’s different than pain later in the day, as it’s more like pain from my joints taking a while to warm up in the morning than it is from using the joints all day. When I’m doing well, my morning stiffness and pain last about 30 minutes. When I’m not, it can take at least 2 hours to wear off.

Living with a Suppressed Immune System in a Pandemic

My traditional daily pain is like an ache focused around the particular joints that are affected and bother me. When it is really bad, that “ache” radiates out from the joint. I put ache in quotation marks because while it is the best description for it, I personally feel like it downplays the pain.

Something I have experienced in multiple joints is cartilage damage from my active rheumatoid arthritis. The abstract of a 2016 study said, “Even successful treatment with complete resolution of synovial inflammatory processes does not lead to full reversal of joint functionality, pointing to the crucial contribution of irreversibly damaged structural components, such as bone and cartilage, to restricted joint mobility” (x). Basically what this means is that even if your RA improves, if it has already damaged your cartilage or bone, there is still pain and difficulty using it.

This study found that “cartilage damage and bone erosion, but not synovial inflammation, are the most important determinants for progressive functional impairment in this chronic erosive arthritis model” (x). This means that, for people who have cartilage damage and bone erosion, those things are bigger factors in the day-to-day use of the joints than synovial inflammation itself.

All posts about rheumatoid arthritis | A day in my life

Living with … Fibromyalgia – I don’t talk about it too much, but I have fibromyalgia! My fibromyalgia is really connected to my rheumatoid arthritis. If my RA disease activity is high, then my fibromyalgia will be worse. This was especially true in college before I found my infusion. 

I do have days where my RA is okay but my fibromyalgia is not, and vice versa. But if I have an RA flare, then I generally will have a fibro flare. And it has been a LONG time since I had a fibro flare without an RA event that caused it. That’s just how my body works.

I take a bunch of fibromyalgia medications and between that and lifestyle things like moving a certain amount, avoiding certain foods, and more, my fibro is pretty well controlled. I used to have pain in basically all of the fibro tender points when my rheumatologist examined me, but now I generally have fewer than 10, although they’re not always the same 10 from appointment to appointment.

(If you’re unfamiliar with fibromyalgia tender points, Creaky Joints says, “Although fibromyalgia is a condition known for causing widespread pain, doctors used to identify specific areas of the body — called tender points — that felt more sensitive to touch to fibromyalgia patients than to someone who doesn’t have this disorder” (x). Creaky Joints also says, “if 11 out of 18 tender points tested positive for sensitivity, this would help them make a diagnosis of fibromyalgia” (x).)

I’m aware that I’m very lucky when it comes to fibromyalgia. If I had straight fibro without a connection to RA, which can be treated much more than fibro can, then it would be a very different story. 

All posts about fibromyalgia | What Is a Chronic Illness? And Other Frequently Asked Questions

Living with … Endometriosis – Oh. Boy. Endometriosis is not fun at all. (Not that any chronic illnesses are.) I’m going to talk about things related to the uterus and ovaries, periods and weight gain next, so if you don’t want to read about that, skip down to the next condition.

If you’ve been reading KTAG for a while, then you might remember that when I developed endometriosis in 2015, mine mostly showed up as having episodes of 2-6 ovarian cysts rupture over the course of 48 hours. Extremely not fun!

I was diagnosed with endometriosis after several months of exclusionary tests. We opted to go with that route versus laparoscopy because, with my rheumatoid arthritis and its medications, we decided that the risks of surgery were too great. If we did laparoscopy, regardless of whether or not we found endometriosis, I would almost definitely form scar tissue. So if there happened to be no endometriosis adhesions (almost definitely unlikely), I could go through that just to form scar tissue. If there were adhesions and they removed, I would probably form scar tissue again.

Additionally, while ovarian cysts rupturing have been my biggest symptoms, I do deal with the other typical endo symptoms: very painful, very heavy periods. That’s the other reason why an endometriosis diagnosis made the most sense.

After trial and error, we landed on depo-provera shots for my endo treatment. I got 1 every 3 months, which helped a lot. Unfortunately, like a lot of people on it, I also gained a bunch of weight for it. It wasn’t awesome for my self-esteem, but at the end of the day, gaining 20 pounds was way better than dealing with cysts rupturing. 

After a couple years on depo-provera with a lot of success, I switched to the Nexplanon implant. It’s the same medication as depo shots, but a) I don’t have to go to the doctor for shots every 3 months, b) I don’t have to deal with it for several years, and c) it doesn’t have as much weight gain associated with it as depo shots do. 

These days, I occasionally have a cyst or two that ruptures every year, but I’m not having the episodes of a bunch of cysts rupturing over the course of a couple of days. In comparison, that’s totally manageable. 

All posts about endometriosis | What’s In My Tool Box for Dealing with Chronic Pain

Living with … Postural Orthostatic Tachycardia Syndrome (POTS) – Postural orthostatic tachycardia syndrome – or POTS – is a condition when the autonomic nervous system doesn’t work correctly. The National Institute of Health (NIH) explains that the autonomic nervous system “controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature” (x).

In POTS, “symptoms […] come on when standing up from a reclining position and relieved by sitting or lying back down” (x). The symptoms are “usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat” (x). Keep reading to learn more about the symptoms down below.

Back in 2017, when I developed POTS, I was hospitalized for several days when I had intense symptoms. Because I have RA, my doctors were concerned that my symptoms might be because I had heart damage (which is possible for RA patients despite being in my twenties). The hospital ran all the cardiac-specific tests they could think of, and they came to the conclusion that I probably had POTS, but they didn’t want to officially diagnose me because they were unfamiliar with it.

I was officially diagnosed with POTS in December 2017, and things have sort of mellowed out now. For about half of the year, things are pretty well managed; I drink enough water, eat enough salt, take my medications, and am okay 90% of the time. 

For the warmer half of the year, it’s a little trickier. I still do those things, but it takes more water and more salt, and I basically can’t go outside if it’s above 85. And I am nauseated for most of the day every day instead of some part of basically every day! It’s fun. 

As you might remember, I was trying the CHOP POTS exercise protocol to help manage my POTS. Unfortunately, just as I was reaching the point where it might have helped, the pandemic struck and I had to stop. I do want to try it again, but that requires regular access to a gym and pumping myself up mentally to do it. It’s a long process!

All posts about POTS

Living with … Anemia of Chronic Disease – This might be the illness I talk about the least. I was diagnosed with this form of chronic anemia in 2015, and it’s probably the easiest to deal with. 

The Cleveland Clinic says, “Anemia of chronic disease refers to having low levels of red blood cells as a result of autoimmune diseases (diseases in which the body’s immune system attacks joints and/or body organs) or other chronic illnesses. Chronic diseases are those that last longer than 3 months. This condition is also called anemia of inflammation or anemia of inflammation and chronic disease (AI/ACD)” (x).

Basically, because I live with chronic inflammation from rheumatoid arthritis, my body doesn’t use iron correctly or create new red blood cells correctly (x). My body doesn’t absorb enough iron by consuming it – so not just through diet, but also through pills. Instead, I get iron infusions as needed. 

Living Life with Chronic Illness: Common Problems & Their Solutions

View this post on Instagram

A post shared by Kate Mitchell 👩🏼‍💻 Blogger (@katethealmostgreat)

Living with … Asthma – I also have allergic asthma! WebMD describes this as the most common type of asthma (x).

They explain that “The symptoms that go along with allergic asthma show up after you breathe things called allergens (or allergy triggers) like pollen, dust mites, or mold” (x). So my asthma gets worse in the spring when spring pollen abounds, is okay during the summer, and then gets worse again at the beginning of fall when plants like ragweed are everywhere. This is because, you guessed it, I’m allergic to pollen.

I actually originally developed exercise-induced asthma in middle school. This is asthma that is induced, you guessed it, by exercising (x). It was okay in high school and college; not awesome, but not bad. 

After college, my asthma was pretty dormant for several years. Then, I moved into the condo I live in now in December 2015. My asthma came back SO. STRONG. After a few months, we discovered why: there was 40 inches of mold on 3 walls of my bedroom, as well as in the carpet. And the rest is history!

Things are a lot calmer now then in 2016, thank goodness. I take daily allergy pills and a twice-daily inhaled asthma medication. At the height of everything in 2016, I was taking 2 inhaled twice-daily medications, plus Flonase twice daily, plus pills, plus my rescue inhaler. 

All posts about chronic illness

Living with chronic illness isn’t the same for everyone. I have found a lot of success by developing habits that I use to manage my life, such as relying on a planner to remember all appointments and accomplish what I want to, as well as by using alarms on my phone to take all medications regularly. 

But I’m also nowhere near the only person to have a bunch of illnesses or conditions. A 2018 study found that 27.2% of Americans (or 68 million Americans) had 2 or more chronic conditions (x). The way I describe it is that autoimmune diseases get lonely, so they create friends. I hope that I’m done developing chronic illnesses, but I wouldn’t be shocked if I developed more over my lifetime.

What are your tips for living with chronic illness? 

Like this post? Check out: 

Mental Health and Chronic Disease Management: What You Should Know, So Someone Healthy Has Given You Health Advice, What Is Self-Advocacy? An Answer + Strategies To Help, We Need To Talk about the “Disease Warrior” Model