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The Struggle of Living with Chronic Health Issues

It’s been a minute since I’ve written about my failing health but don’t worry, friends: that doesn’t mean I haven’t been continuing to fall apart!

I notice that if I don’t talk or write about it, people tend to think my issues have gone away. Man, I wish that were the case. To review, here’s my running list of health issues:

TMJ problem
Cystic acne
Rosacea
Patello-femoral syndrome
Coccydynia
Depression and anxiety
Hypothyroidism
Vitamin D “insufficiency”
Anemia

Getting off birth control: A WHOLE NEW ME

I recently stopped taking birth control, which means that cystic body acne of mine is going to make a reappearance soon. Not looking forward to that. So wow guys getting off birth control has been one wacky ride.

I started taking birth control at the start of 2014 as a last resort for the cystic back acne I struggled with for about 8 years. It worked, it solved the acne problem. But birth control also had a lot of side effects for me, both proven cause-and-effect (nausea and vomiting) and suspected (mood effects, rosacea, loss of libido).

I decided I’ve had enough of the intermittent vommiting and I wanted to see if getting off the pill would help with my rosacea.

My rosacea before and after topical treatment
Rosacea life :/ This progress has only been possible with the use of multiple topical creams. The texture and redness have improved but I’ve noticed I’m missing some freckles on that side of my face now. I’ll likely have to manage the condition for the rest of my life.

I’ve been off it for over two months and so far I’ve lost some weight, my libido has made a dramatic return, and I just feel really different. I got my first real period in a year and a half. I’m excited to ovulate and go through the whole ups and downs of the cycle.

Not super pleased about losing weight and not looking forward to the Return of the Cystic Acne. But overall I’m really glad I’m off the pill. I just feel better.

How crazypants is it that we take these pills so casually? We just mess with our hormones like it ain’t no thing and meanwhile, it’s like THE BIGGEST THING EVER. Your hormones play a role in everything that happens inside of you. I was reading about how being estrogen-dominant (this is what the pill does to you) affects your thyroid, affects your adrenal glands, affects your ability to absorb nutrients…The pill raises your blood pressure, can make you nauseous, affect your mood, your weight, your sex drive…

I mean there’s probably so much more too but it’s just insane. I’m not saying don’t try the pill if you want to try the pill. Try it. It’s a different experience for everyone.

If you’re a doctor and you’re reading this…

Combined oral contraceptives are not the be-all-end-all of treatment for acne, period cramps, PCOS, etc. They are NOT magical pills! If your patient comes in with any new issues that could be tied to being estrogen-dominant on the pill, this could be due to the pill. Recognize that. These pills can change who you are from the inside-out and that has a lot of consequences – not all are good.

All the meds

When I got back to Atlanta from Baltimore, I made it my mission to actively tackle my accumulating health issues. In the process of visiting lots of doctors, I also uncovered I have a vitamin D “insufficiency” (this is apparently less insufficient than a DEficiency) and anemia.

At one point this is what my bathroom counter was looking like:

Counter of medicine to treat health issues

So we have a topical antibiotic, prescription-strength moisturizer, and topical ivermectin cream (of all things!) for my rosacea; iron tablets for anemia; vitamin D gummies (why isn’t all medicine this yummy/gummy?); thyroid medication; a muscle relaxer for my jaw…

In comparison to some people, this regimen isn’t even that bad. I recognize that I don’t have a “chronic illness” in the sense that I don’t have an auto-immune disorder or something like that (thank goodness, I’m super grateful for this). But these things do pile up and take a toll on your mental health. It’s like this constant battle to keep everything in check so I can live my life normally. It sucks.

Buckets and spoons

The health issue that most affects my life right now is the chronic pain I’ve been experiencing in my jaw.

It’s such a saga that I don’t even want to get into it too deeply here…The short version is that the cartilage in my temporomandibular joint is displaced and this is causing reduced range of movement and lots of pain. Things like eating and yawning are painful and difficult because I can’t open my mouth very wide. The pain can be so bad, it radiates into my neck and head.

So I’m trying to seek treatment but it’s complicated. Hence the saga part. It would take me another 500 words to explain it here and this post is already super long.

This too shall pass in Hebrew
Gam zeh ya’avor – this too shall pass. But what happens when it doesn’t? What happens when you have to live with pain day in and day out?

In addition to trying to diagnose and treat this issue, I also have to contend with a healthcare system that capitalizes off my pain and poor health instead of working with me to make me well again. It’s awful and emotionally draining.

Anyways, I’ve realized with this issue as well as the chronic pain I experience in my tailbone when I get up from sitting and lying down (coccydynia), how delicate my resilience is. I’ve always thought of it in terms of a bucket:

Like I have this bucket of problems that reduce my ability to function normally and happily. You can fill the bucket with health issues and as long as it doesn’t spill over, I can still function and be okay. But once it gets too full – once the problems either intensify or I get more problems added in – I can’t live my life normally anymore. My mood sinks, my productivity drops, my mind becomes entangled in circling thoughts of helplessness and frustration.

Sunset at the park helps with chronic pain
Dusk at the park. Being in nature helps a bit with the emotional burden of chronic pain I find.

Because that’s the thing about chronic issues: they often don’t go away. You have to find a way to live with them. Ideally, you would figure out how to make your bucket bigger i.e. grow your resilience “muscle”. My therapist says mindfulness meditation helps with this. Easier said than done.

By the way, there’s a similar but different theory called the Spoon Theory that probably explains what I’m talking about with the buckets much better than I have.

My point is…

Things could certainly be worse and I’m grateful that they aren’t. I just wish I could grow my bucket or get more spoons so I could focus my daily energy on things that bring me joy instead of things that stress me out and cause me pain. And what I really wish is for effective treatment for my jaw (that doesn’t risk me losing my hearing or experiencing nerve damage) so things don’t continue to deteriorate and I can stop putting my life on hold to deal with my health problems.

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7 comments

  1. Jennifer Nash says:

    Both my grandmother and aunt suffer from TMJ, so I do feel your pain. Inmoost of my early memories of my grandmother, she had a heating pad wrapped around her neck to ease her sore jaw. I can only imagine how difficult it is to be productive with nagging pain like that. I liken it to my occasional migraines, where the headache is such that it cannot be ignored.

    Your bucket analogy is absolutely correct. While I’m fairly free of physical health issues, I use this analogy to describe my stress levels. If the bucket of daily stress starts sloshing out, my anxiety kicks in to a point where I can no longer manage life. I think we all have our “buckets” that must be attended to, they just hold different things.

    Best of luck with your health issues! I wish I could give you more suggestions for your TMJ, but I think my grandmother just takes pain killers now, which is obviously not ideal. (Unfortunately, she follows the “pill for every ailment” mantra of life.)

    • mishvo says:

      Hi Jennifer,
      Yeah the TMJ pain is pretty awful. I’ve been just like your grandmother lately with a hot water bottle on my cheek every day! I had an appointment with a physical therapist who gave me some good exercises that have increased my maximal jaw opening which is suuuuuper exciting. I’ll be going back to him and I’m hoping that will be all I need for treatment but I don’t know what’s going to happen. I’m still in pain so we’ll see :/

      I like what you’ve said about how “we all have our buckets, they just hold different things”. I could definitely see how this could relate to stress or mental health.

      Thanks for your thoughtful comment and well wishes – I go back and forth between feeling like everything might just be okay and panicking about the possibility of my jaw completely not working one day from arthritis. Finger’s crossed it’s the former.

  2. Shanika says:

    Dermalmd acne serum works great with new blemishes but I struggle with cystic acne here and there and it doesn’t seem to do much for that. Wish it worked for all sorts of acne but unfortunately it doesn’t. Still a great product and highly recommended to people who have struggled with stubborn acne to use at the first sign of a pimple!!

    • mishvo says:

      Hi Shanika, thanks for the recommendation! I’m always looking for new treatment ideas for my acne. I just ordered tea tree oil for the first time – which looks like one of the ingredients of DermalMD – and am curious to see how that does with the non-cystic stuff. DermalMD also looks like a really interesting product…I might go into Sephora and test it out now! The reviews online are really good for it too.

  3. Joey says:

    I like your ‘bucket of problems’ analogy–it’s sort of like you can fill your bucket with different issues and they sort of slosh around, but at some point one of the problems gets to be too much and there’s a spillover effect. Then, like you said, it reduces your ability to function normally and happily. I feel the same because I’m also dealing with a bunch of chronic medical issues. I think the hardest part is that people who don’t have them think ‘chronic’ is somehow not serious, that it’s livable and you can just deal. So you get little support even from the people you love. Actually I get a lot of support from my doctor who called me back in (she’s more proactive than I am!) and said I can’t get used to this low level of functionality (I have a chronic joint condition) and I need to keep up with physical therapy. She’s gets that it’s easy to get overwhelmed, though, especially if you have lots of problems at once. Do you have a doctor or healthcare professional who really cares? It helps a lot. Hope your skin problems remit–have you tried triamcinolone? BTW I also had TMJ way back but it thankfully never developed into a chronic condition. I took high-dose ibuprofen daily, then did physical therapy and after about a year it resolved completely. For about a month, though, I couldn’t open my mouth all the way. Hope your TMJ gets better, as well as the rest of your problems so you can continue bouncing from city to city! Seriously, you’re heroic! You have chronic problems, you travel the world. I have problems, I work from home. How do you do it? Sorry I write way too much!

    • mishvo says:

      Hi Joey,
      I’m glad the bucket analogy resonates for you. I completely agree that one of the hardest parts is that people have a hard time understanding how you can *still* be suffering even if they can’t see your illness or even if you’ve gone through treatment. Like I find if I mention one of my health problems people will be like “wait that’s still an issue?” Well yes!! Just because I don’t talk about it all the time or look sick doesn’t mean I’m not in pain.

      I’m glad to hear your doctor has been supportive. I do have some health professionals around who are wonderful. That’s interesting to hear about your TMJ experience – I’m very jealous it went away in a month!! As for me, I haven’t left the country in over a year partly because of my health issues. And I work from home too! I have finally booked flights abroad but it has been a looong time coming. With these things I’ve learned you have to be patient with yourself and do things at your own pace. And then honestly I think the next most important thing is to surrounding yourself with supportive friends and family. I had isolated myself for a while before realizing this. I’m now trying CBT with my therapist (mental health) for my chronic pain to see if I can treat it from the psychosomatic perspective. Anyway, thank you for your thoughtful comment and sending you good vibes for your chronic health issues too!

      • Joey says:

        Hi Mishvo!
        Thanks so much for sending those good vibes, I can feel them resonating in me just like the bucket analogy! And i’m really glad that you were able to book overseas flights and are fiiinally going abroad! Speaking of, my OT (occupational therapist) just left Saturday for England and France, and I’m soooo Jealous! Well, it’s only a weeklong trip so she’ll be back soon, hopefully helping me get better so I can go to Europe too (one day). One day, I want to be writing a post like this, except I’ll be curled up in a quaint dimly-lit cafe on a tiny street with no name in Amsterdam. But it’s nice to hear that someone else with chronic illness is literally taking off–you’re my role model! 😉

        I’m really sorry that you’re still struggling with TMJ–I’m actually not sure if I had TMJ, per se, because it might be a chronic condition by definition. But it was really painful and I literally could not open my jaw all the way, which I took as an excuse to drink lots of smoothies! I think I tried every smoothie at the local shop, finding that raspberry-blueberry ones with plain frozen yogurt were the yummiest. I should have a launched a beverage blog with that experience–and maybe gotten like 3 subscribers, mostly family members. Speaking of, it sounds like you do have a nice support network with friends and family. I thought about what you said, that you isolated yourself and I think I may have pushed people away. Yes, I don’t think people are always understanding, but then again a lot of these issues are by nature hard to put a finger on. But I so relate to your frustration – “Just because I don’t talk about it all the time or look sick doesn’t mean I’m not in pain.” Totally!! A lot of people want a splint or a bandage or something visible, but that’s just not the thing with chronic issues. Like I don’t always have redness and peeling on my face and temples (sorry to gross you out), and people forget it’s an issue. In fact, I find people’s lack of understanding almost as enervating as the pain and loss of function. Like I was excited a month ago when I found an OT that I work well with, and people were like, “I thought you were DONE with that.” Hey, maybe I should start a blog on chronic problems instead of smoothies!

        Please let me know how the CBT goes–btw, didn’t know online therapy could be that deep. That’s how I found your site–I was looking up Talkspace reviews and found your article. I actually signed up for Talkspace two nights ago and went through the intake counselor, but she quickly directed me to payment options and suddenly I felt like I was on eBay. Like, “Your therapist shopping cart has (1) item.” I wasn’t ready to pay $160 *before* even knowing who my therapist was…but then I read your review and it sounds like you’re really happy with it. For one thing, I can’t afford traditional therapy (have to figure out the freelancing thing, that’s another thing to bother you about!)
        I’m sorry I wrote so much and hope I didn’t overwhelm you! I really hope you feel better, Mishvo! The waves of healing you sent my way are bouncing back!!! Thank you.
        Joey

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