Looking Odd, Odder, Oddest

I am a little odd. I’ve known this for a long time and I’m good with it. Recently I’ve gotten odder. So here’s my story with some back story first.

Medically I’ve always been a little out of the ordinary. The first indication was when I was born. I was very small and remained so until HS which resulted in a multitude of dietary interventions (can you say Tiger’s Milk?). Seemed I was also so sensitive to sun that I’d burn badly just being in my crib inside with a little sun coming in the window – in January. I’ve had cysts, orthognathic surgery, and a molar pregnancy. I ended up as patient #6 in a medical journal for xanthogranulomatous oophoritis because it is kind of sort of really rare. My surgeon was so excited that he practically begged me to allow him to publish.

Which brings me to the most recent oddity. I thought I had ringworm. First, I work with animals and sometimes animals have ringworm. I’ve had ringworm before (granted it has been a very long time ago), but mostly because Sparky is a fungal magnet and keeps getting fungus at the gym (yet another reason not to join). I immediately started treatment with the prescription antifungal cream that Sparky hadn’t used up. I treated from September to January. I started to worry when the areas began to increase in size. So I finally went to the doctor. He looked at it and scratched his head. “It doesn’t appear like ringworm to me.” he intoned. Then after poking and squeezing it and then making some odd noises associated with indecision, he sent me to the expert.

I was able to get in to see the dermatologist in February. He was nearly gleeful as he examined my arm lesions. I suspect he gets really bored with acne, seborrhea and psoriasis. He was absolutely giddy as he measured and took photos of my lesions. He kneaded the skin and got very excited as he explained that he wanted to take a biopsy to confirm his suspicions, just a little outpatient surgery. The results indicated a rare condition which has no cure. The treatments don’t often work, no one really knows what triggers it. It sounds like Morticia Addams’ sister – Morphea (aka localized scleroderma). It is a rare, 3 in 100,000 disease in the autoimmune family. On the bright side it isn’t contagious and will probably, (maybe) resolve itself in 6 months with treatment or a couple of years without. On the downside it will likely leave a nasty ugly scar. I couldn’t just have something curable. Treatment has begun with some pretty high powered steroid cream. My dermatologist is very excited with the whole thing. I’m less enthusiastic.

So I’m starting early to come up with some sort of heroic or exciting story to explain my scars (sorry no photos). I’m toying with “they are scars from when I ran into the neighbor’s burning house to rescue their cat.” Or perhaps, “Oh that? I got that when I was kidnapped and the maniac who abducted me burned me because he thought that would make my alien force field go down and reveal my real identity. I don’t want to talk about it.” Do any of you have a better story I can use?

68 thoughts on “Looking Odd, Odder, Oddest

  1. Oh my goodness. I’m going to have to research! Not now though – too early. I love your attitude. Hoping you’ll be odd again and have an extra short recovery! Peace ✌🏻

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        1. Thanks EJ! I am used to being the odd duck… I suppose it is all good if we can accept who and what we are and strive toward the best versions of ourselves. I hope your summer is pleasant and life is easy…

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          1. Seeing and accepting what we like about ourselves is a victory! Whatever stresses I have this summer I remind myself to balance them with joys – even very simple joy – like getting excited over my son’s baby watermelons in his garden! πŸ™‚

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        1. Our newspaper has gotten so thin there is hardly enough to line the bottom of a bird cage. I’m waiting for it to go to a weekly instead of a daily paper… They already send it out of state to be printed which makes the news old.

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          1. Of course. People can’t leave the house, let alone, schedule events of any kind.
            Maybe making up the news to stuff the pages might be fun. Write some outlandish stories like they do on April fools day.
            Provably end up with a war of the worlds situation 🀣
            Maybe a weekly edition is best.

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            1. I’d be happy if they just reported local events – a police beat, weddings and funerals, HS sports… but they refuse to give up printing AP wire stories that by the time the paper lands on the porch is old old old news.

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              1. That is unfortunate. Are weddings and funerals being held with large groups?

                With people inside reading more than ever, you’d have to say the paper is missing a trick here.
                Newspapers are hanging on by a thread. In a few years I may have to explain to my children what the strange pile of papers in the hotel lobby is supposed to be.

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                1. The weddings are mostly outdoor affairs and the have (up until a couple days ago) required masks and distancing… I think that those businesses that are flexible and innovative will survive but ones like the local newspaper are going to struggle unless they can reinvent themselves to align with the needs of the customer. Currently the only reason my friends still subscribe is to have a substrate for the bird cage or the rabbit hutch!

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                  1. Progress is good. With the state of corona and for businesses desperate to succeed.
                    I wonder if the newspaper knew what their paper was used for, would they quit and just go into pet waste products.

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  2. Oh, Val — I’m sorry to hear that this is hitting you now, just as you’ve retired and are looking forward to enjoying life.
    As I start a round of chemo and radiation, I will keep you in my thoughts!

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    1. Oh Janet! I thought you were just having a minor issue!! Chemo and Radiation are serious business – my little oddity is of no real consequence (other than a nasty growing scar)… I’m sending prayers and positive thoughts your way as well!

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      1. Thanks, Val — I’m glad that I somehow was so optimistic about a cross between endometrial and ovarian cancers and possibly colon cancer too that I was able to make it sound minor. I knew that the surgery was likely a first step, but hoped that I could avoid the chemo and radiation! It looks now as if I’ll be fighting for at least the rest of this year! At least we found it all early enough to fight it all and hopefully beat the odds, thanks to Medicare’s wellness visits!

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          1. Thanks, Jane — I’ll know a bit more after tomorrow — I’d hoped to avoid the chemo/radiation routine, but it has to be done. It it saves my life, it will be worth it! I’ll post more over the weekend.

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        1. Prevention and wellness screenings are the key – that’s how they found my mother’s aortic aneurism and were able to watch it and make the determination for when the surgery was necessary. Same for her coronary blockages and carotid blockage. She wouldn’t be with us now if it weren’t for the “Life Screening”. I’m so relieved that they caught it early and that the surgery removed most of it and that the chemo and radiation are scheduled as a “clean-up” instead of a primary treatment! Stay strong! A positive outlook can really improve the outcome!

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          1. Thanks, Val — I basically agree that the wellness visits are important and healthy! I, too, am glad that my issues have been found early and that they can take care of it to make sure things don’t recur, rather than trying to cure with chemo and radiation. I am basically a pretty optimistic person, although some of this is tough to encounter. I will do what has to be done, with as much preparation and awareness as possible, and I’ll still be here at the end of the year!

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  3. The results indicated a rare condition which has no cure… Morphea (aka localized scleroderma).

    My daughter’s preschool teacher’s daughter has this. That’s why I’m familiar with it… It’s a bummer diagnosis. I wish you all the best, Muri, truly. I hope the treatments help to the utmost that’s possible.

    Yours,
    David

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    1. Thanks David. I’m old and I don’t think it is going to affect my self image. But when someone young gets it, well, I can only hope it doesn’t hold her back and make her hesitant to take on the world…

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        1. Most of the time you could never tell – but now I’ll have to field some questions or strange looks in the summer (although with my pale skin the white scars are hard to see even if they are the size of lemons). I’m sure he mother is supportive…

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  4. There’s all kinds of weird stuff like that. I have Samter’s Triad which is a rare something that affects 1 in 10,000 people. I weighed 4 pounds when I was born and was sick a lot as a kid and nearly died from pneumonia, then scarlet fever, then measles. Sometimes you just wonder… I really hope that your doc is able to treat it successfully. Sometimes I think that us small babies who get through all this weird stuff are just determined to live. ❀

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    1. I am characterized as small but fierce. I think it is the red hair as much as anything… I had pneumonia nearly every year until I was in HS, by then I knew to go to the doctor as soon as I had an inkling of a cough. Still had bronchitis all the time! Mumps – check, chicken pox -check, measles – check, rubella – check, and now shingles twice (but I got the vaccine so hopefully never again). And yes I have allergy induced asthma. I’m counting on “what doesn’t kill you makes you stronger”!

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      1. I’m a short red-haired lady as well, though, clearly, the red is long gone… Auburn actually. But yeah. I’m pretty fierce. I had strep throat every year until I guess 9th grade when the tendency faded. Of course, I’m allergic to penicillin so for some time in my life before broad-spectrum antibiotics it was a month in bed. Somehow, I think it’s all kind of funny. Ha ha ha!

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        1. I’ve lost count of the number of times I had strep throat! I finally had my tonsils out at the age of 29. I did not enjoy myself. I, of course, insisted that if I was going to be going under the knife I’d rather have one anesthesia event and I insisted they take the tonsils, the breast lump and the huge, deep to the bone, plantar wart. There I was unable to walk, speak, or use one arm… They wouldn’t let me go home until I proved I could swallow jello. I wanted to get out of the hospital so badly that I ate that jello while tears streamed down my cheeks… And I lived to tell the tale! hehe!

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  5. I am sorry to hear about all of your problems. I was very sick until they finally took my tonsils out. After that I never would tan until the last couple of years. I am a sunscreen fanatic because of that.

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  6. When you said you were odd, I was thinking that maybe you didn’t like French fries or bacon. But no, you’re really unusual from the inside out. What a nuisance to have such an uncooperative body! At least you were blessed with an extraordinary mind.

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    1. Thanks Judy – you made me chuckle! Some would say my mind is the oddest thing about me! So far the body hasn’t out and out betrayed me but we’ve been in a serious discussion for the last couple of weeks! I love french fries and bacon but my body (dang thing) has decided that if I eat them my cholesterol will go up and then I’ll be in trouble with the doctor… Getting old is not for sissies!

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  7. some ppl just have to be different! So why not you … what a beggar 😦

    Some get freaked out by my double mastectomy – I didn’t get a rebuild so it’s obvious – so I just say … “my boobs tried to kill me so I got rid of them”! Not appropriate for your condition but maybe “the lab rats got their revenge”; “they trialled the covid vaccine on me and this is the result” … mind you I do prefer the kidnapped alien angle myself πŸ™‚

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    1. The “built-in floatation devices” are not essential and I doubt I’d try to reconstruct as well. As for your explanations – I’d never throw the rats under the bus and blame them. They were my partners and I respect them too much. I’d rather say “I got COVID and this is one of the long lasting symptoms they don’t tell you about – at least it didn’t spread to my face!” Hehe! The alien force field is my favorite too!

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        1. A little. At first it sort of itched (why I thought it was ringworm). Now it tingles when I move my arm a certain way. The doctor said that was because the scar tissue rubs on the nerves… but it is just an annoyance and intermittent. I mostly feel it at night or if I wear fuzzy clothing.

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            1. It isn’t going to vanish – I will always have the big round shiny scars. That said it hasn’t been awful. Just annoying. I’m glad it is on my arm as some get them on their backs that interfere with spinal nerves (much more painful) and impede mobility. I’ve been reassured that it is self limiting – eventually… I’m considering telling people that the scars are from a particularly large tattoo removal! Probably more plausible than running into a burning building or being held hostage.

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  8. I wish your scar disappears sooner. It is already difficult for me to pronounce all these odd names of diseases. Kidnapped by aliens is better for me too. Hugs and Love.
    Get well soon. πŸ™‚ (flowers)

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    1. I think it is the price of living to an age only imagined in ancient times… As the average age increases so do the issues related to longevity. Hope your skin issue is resolved without any scarring!

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