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My Latest Symptom

            The most recent embarrassing symptom of my autoimmune/connective tissue/who-knows-what disorder was a wound on my lip that refused to heal. Actually two. The first one was on the right side of my lower lip and lasted at least three weeks, and as soon as it healed another one opened up on the left side. I can’t even explain the frustration I felt when, after less than a day with actual normal skin, a new wound opened up.

“You looked really weird, Mommy.”

            This would have been fine, though, if every time I was in the view of other human beings I was wearing a face mask, but I teach online once a week, and take a Hebrew class online twice a week, and I was supposed to record another choir video, so it was been an exercise in holding my head at funny angles, rejiggering the lights, and trying not to feel embarrassed when my still bleeding lip, or any of the many different scabbing stages, were visible. Only one of my students mentioned it, and I’m assuming that everyone else was either being polite or not actually paying attention to me (which is more likely).

“Were you saying something?”

            The oral pathologist said the lip wounds were probably caused by a combination of the Lichen Planus (an autoimmune disease that impacts the inside of my mouth and also my lower lip for some reason), and the way the face masks keep moisture in, and the steroid gel I have to use to control the Lichen Planus (which barely works, but successfully thins my skin). He wasn’t concerned, though. He was also unconcerned that there was an ulceration on the side of my tongue, and raw red skin on the inside of each cheek, and gum irritation that will lead to more and more problems in the future (his nurse joked that I should save my money for all of the dental work I will need – Ha ha! So funny!), all of which has made eating a painful experience for quite a while now. But other than that, sure, no big deal.

            The thing is, if I could just be sanguine about my symptoms and accept them as a passing experience, maybe I’d be okay. But instead, I end up feeling like these symptoms are proof that I am a disgusting and unlovable creature. I feel like a throwback to biblical times, when Miriam (the sister of Moses and Aaron) was punished with a skin disease for being a gossip. I’ve been putting off teaching my synagogue school students about Tzara’at – the skin disease Miriam, and others, were supposedly punished with for their “bad speech,” because I really don’t want to risk them thinking this lip thing is going to happen to them too. And, really, I don’t want to risk convincing myself that there’s something to that argument. I mean, if gossip caused skin disease none of us would have any skin left!

“What?!”

            As soon as my lip healed – mostly – I rushed to do my choir recordings before a new wound could open up, and I made it with one day to spare before the deadline (I really did not want to explain why I would need more time). And instead of worrying about my lip, I was able to worry about the glare on my glasses, and the break in my voice when I had to move from the lower notes to the higher notes, and the flyaway hairs escaping from all sides of my ponytail, etc., which was a relief.

            I don’t know what my next weird symptom might be, because it’s generally unpredictable, and I’m not so evolved as a human being that I can be blasé about symptoms that impact how I look. But for now, I’m going to make the most of the feeling of freedom that comes from being able to turn my head from side to side while I’m on screen, and eat salty food without fear of excruciating pain, and knowing that if I fall into the depths of despair in the next few days it will be about something other than how I look on Zoom.

“I think I look pretty good.”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

About rachelmankowitz

I am a fiction writer, a writing coach, and an obsessive chronicler of my dogs' lives.

85 responses »

  1. Oh, Rachel, I’m so sorry you are having to go through all these struggles. 😥

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  2. Praying for you.

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  3. That cannot be easy. You are a brave, strong and amazing woman. Sending healing thoughts and prayers to you.

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  4. Sounds very frustrating! Hope no new weirdness happens…

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  5. Ditch the mask, Rachel. They don’t work anyway, and you’ll be able to get some air into your lungs and your mouth.

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  6. Rachel, Sorry to hear you are going through this. Everyone has “something” that they have to deal with. Power through and don’t let this define you or your feelings.

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  7. I’m so sorry that you’re undergoing this repeatedly. Maybe some supplement like vit B and folic acid may help.

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  8. This indeed very frustrating for you. Autoimmune diseases are desperately frustrating as they are always throwing up some new wrinkle. I’ve had one so I know. It has now left me and I hope yours will leave you . Courage my friend !

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  9. That sounds rather painful, in more ways than one. I hope things improve soon.

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  10. I know nothing about your autoimmune disease. I do take folic acid and L-lysine as recommended by my rheumatologist. Otherwise i don’t have a single day without mouth ulcers. I’ve had them scraped and biopsies done. Never an answer to their cause. I hope you find something that helps. I feel your pain.

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  11. Do you have the option of wearing a welder style mask? It might allow for better air flow and healing. ❤️

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  12. Sending you bear hugs
    ʕっ•ᴥ•ʔっʕっ•ᴥ•ʔっ

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  13. Persistent niggling ailments like the lip problem seem to be reported more and more. I hope you find a resolution soon.

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  14. That’s a painful place for a wound and I know how difficult it can be to have something visible. I am so sorry! And then when it’s not there: other things to worry about. I hope writing about it helps too 🙂

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  15. I am no doctor, and you might want to consult with yours. Have you taken anything like “natural” for your ails? I am one of those that likes using both Western and “new age” medicines. They might be a little more expensive, but they might also help, at least soothe? All your doggy is so pretty ❤ Look at that bow! ❤

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  16. Lip and mouth sores are especially annoying and feeling self-conscious about them is normal. I hope your condition has a happy resolution.

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  17. So sorry you have to jump through so many medical hoops. I know you’ll hang in there.

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  18. That sucks! I don’t blame you for feeling self-conscious about a visible sore, but my heart breaks that you feel it reflects badly on you as a person. Your health problems are not your fault! And you are a worthy, lovable person. I understand that your past and mental problems make it hard for you to feel that way. My past is nowhere near as traumatic as yours, but my depression wreaks havoc with my self image. But we’re not talking about me. I hope you find some relief for your symptoms, and please keep reminding yourself that you are, in fact, a wonderful person. Thank you for your posts.

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  19. So sorry you have been dealing with all this. It’s one if the worst experiences to think something is better just to.have that issue affect you again. I’ll be praying for you as you come to mind.

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  20. Sorry to hear about the lip/mouth issue, but glad it healed.
    You do worry a lot about many things though. The glare on your glasses?
    Try to worry less, and you wil be happier, I have no doubt. When you are a lot older, you will laugh about the things you worried about now, I promise you.
    Best wishes, Pete.

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  21. Although I pressed “like” I’m far from liking what’s been happening to you! Hey, painful eating? That could be a new weight loss program! (Just trying to make you feel a bit better…)

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  22. I can sympathize, Rachel. I’ve had a sore on the corner of my mouth for a year now, and nothing I can throw at it will make it go away. I’ve been very grateful for mask-wearing!

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  23. I keep reading your posts and I am so sorry that you have so many struggles with your health.. All those doctor and hospital visits can quickly wear you down. I am in good health but my wife is not. So it’s a continual struggle between doctors and hospital and we are in a country town and her hospital is 336 miles away.

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  24. How awful for you Rachel on top of everything else. Hubby’s skin suffered terribly wearing masks all the time, so his remedy was to grow a beard. Sadly us gals can’t exactly do that, and creams and lotions seem to make it worse.

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  25. Hi Rachel,
    Have you tried taking L-Lysine as a regular supplement? I also have a skin related autoimmune condition and was similarly getting lip sores but since taking L-Lysine as part of my supplement regime, plus using bag balm lightly if something just begins to crop up, I have not had any major flareups.

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  26. I feel your pain. I don’t want to start a deformity challenge here but this week developed a stye next to my eye and people are looking at me as though I were a Leper. I looked around for a Kohen but no joy. Sunglasses 24/7. Glad to hear you are recovered!

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  27. You have a host of followers who are full of sympathy, advice, and prayers for you. I add my sympathies and prayer to theirs. No advice for you, though. I have a feeling you’ve received more of that than you can handle already! God bless you, Rachel ❤ Hugs!

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  28. Sylvia Rushing

    I have the same issues(upper lip), Mixed Connective Tissue Disease and Sjogren’s Syndrome. I use Abreva on the lip sores and rinse with warm salt water for inside mouth sores 3-4 times a day. It does help when these sores occur. I’m 71 and started showing symptoms at age 17. It’s a real pain, I know, but you do adjust somewhat eventually. I hope this helps a little.

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  29. I was kind of glad to read that I’m not the only one thinking about what they. look like on Zoom (but I really am sorry you have an unpredictable condition, that is not fun). I have purchased quite a few turtlenecks lately to try and hide the extra pounds I’ve put on that really show up as an extra chin on Zoom (I wish I was kidding)!

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  30. Have you heard of the Vanderbilt School of Integrated Medicine? My friend’s daughter has EDS and a host of other autoimmune issues, and she was recently admitted to one of their programs. They have doctors in all major fields working together to come up with the best treatment plan for the patient. When I heard about this, I thought of you with hopes that it may help. (It can take several months to be admitted to the program.)

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  31. I also suffer from Lichen Planus. In my case it manifests itself in my mouth, which is kind of ironic given I’m a chef. I’ve learn to manage it and found the biggest trigger is stress. There seems to be a growing number of autoimmune illnesses and while I’m no scientist I firmly believe that modern living whether is chemicals in food, food additives or household chemicals over a long period of time upset our bodies and make up hyper sensitive.

    The thing is, many of us believe if it is sold in a supermarket it must be safe, but often product safety testing is not exhaustive enough before a product is allow to be sold.

    I do feel more research is needed by governments around the world to humans increased sensitivity, to the world we live in.

    I was given steriods in the first place and they helped the Lichen Planus, but they won’t allow longtern use as that can damage your kidneys and liver. I now have a low dose steriod that I disolve in warm water and rinse my mouth out as when it flares up. I also found exercise a great help to relieve stress.

    Best Wishes
    Kevin

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  32. Oh Rachel, I’m so sorry. This – “I end up feeling like these symptoms are proof that I am a disgusting and unlovable creature” – made me want to cry. I realise that nothing I say will make you feel any differently, but all I can do is assure you that you are beautiful and very lovable (and I’m always right 😉). Autoimmune diseases and conditions suck. I’m fortunate in the sense that the skin issues I have because of autoimmune disease have been mostly where people can’t see (on my back and mostly all over my front, these weird rashes everywhere that looked ridiculous).

    The wounds on your face bring an invisible condition into a more visible realm, and it makes me wonder what’s worse. When we feel nobody has a clue what we’re going through because they can’t see it, or when someone can see just a teeny tiny bit of it when it’s obvious to the eye. Short of putting a bag over your head, or saying you have Covid and don’t want to take any chances at passing it through the computer to the recipients on the other end, there’s not much you can do. I hope it doesn’t happen again and that your face is left well alone from here on out, but if it did happen, please know that anyone who knows you and cares about you will only be wanting to know if you’re okay. There’s no judgement or snarkiness. Just concern and friendship.

    Sending hugs,
    Caz xx

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  33. Look around and join the crowd. We all have some imperfection on our body to concern us at any given time. Reassess the philosophy of your dermatologist in the meantime.

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  34. I get canker sores inside my mouth too sometimes! Apparently sodium lauryl sulfate (SLS) can also cause canker sores, so you can try a different toothpaste to help with that. I remember Rembrandt was recommended to my mom. https://health.ucsd.edu/news/features/Pages/2019-07-08-otc-oral-health.aspx

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  35. Rachel, how unfortunate to have such a painful and noticeable problem. The gargling with steroid water may be the best thing as the chef describes.

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  36. Hang in there! The important things you share are kindness, love, and God’s wisdom. Appearance doesn’t matter. Remember what God told Samuel when he was looking for a king to anoint: “God does not see as man sees; man looks on the outward appearance. God looks at the heart. Bless you.

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