Oh, I am so sorry. Please excuse my oh so messed up body.

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As I lay down in my bed, I am out.  I almost always hit the pillow and it takes about three minutes and I am asleep.  Often times, parents of little babies and young children teach them bedtime by setting a routine.  Baby gets a bath, read to them, sing one song, and hugs and kisses.  Well, (you can call me weird, but I already know that) I believe I have done this with myself.  Of course I have the getting ready process.  I will spare you that.  It is not as simple and soothing as the babies’ routine.  But I hit the pillow and I start running a list through my head.  My two most popular lists:  1.  What are the decoration changes that I want to make to my house?  2.  What would I change about myself if I could?  Fifteen.  No fourteen.  There are fourteen things I would change. 

1.  I wish my hair was a little thicker.  2.  No contacts.  Perfect vision would be nice.  3.  No scars around my neck.  4.  No itchy back.  That was right.  No itchy back.  See?  I am a lucky one in a million billion that has a rare condition within a rare condition of MEN2A in which my body deposits protein on the top part of my back.  It drives me insane!  It itches all the time.  All the time.  Almost daily, I scratch it until it bleeds.  I have done this since I was a baby.  I wish I did not have that.  5.  Stronger arms.  I work on it.  I do.  I go to the gym when I can and lift weights or as of now, or recently, I have been trying Yoga.  But I’ve been a little weak lately so I don’t push it by going to the gym.  So, I wish I wasn’t sick.  Wish I could go to the gym.  And wish I had stronger arms.  6.  No scars on my stomach.  7.  No stretch marks.  Nah.  I look at those and wish they weren’t there and then I remember why I have them.  Actually, call me crazy, I’ll keep those.  Worth that memory.  So, 7.  Thinner legs.  (Reinsert gym explanation here and add to it that I do not eat sugar.  Ok.  Yes, I do eat fruit.  And yes.  I do know that carbs turn to sugar in my body.  Restate that.  I do not eat desserts.  Why?  There is one reason to eat desserts:  They taste good.  There are four reasons not to:  sugar makes me gain weight, not good for my teeth, makes me, and everyone, sick more often my weakening my immune system, and lowers my energy.  Perhaps that was all too much to say within parenthesis?) 8.  Perfect teeth.  I hope you think my teeth look perfect, but the front two have crowns from chipping them on the swimming pool.  9.  No veins on my legs.  10.  Better singing voice.  (if I could insert a clip of me singing here, you would agree)  11.  No scar on the back of my leg.  12.  No scar on my left arm.  13.  No Addison’s Disease.  14.  No cancer.

There is my list.  Sure.  Everybody has a list.  But I do try to be really content with my body, but these are things I hate.  I really do hate.  And about 12 out of 14 (at least)  are here for life.  Nothing I can do about it.  About half of those nobody sees.  And the other half, I try to hide most of the time.  Prime example, You won’t find me in any singing group or trying out for American Idol.  But, I go to buy life insurance, and I can’t.  I go to the doctor for allergies and I have to continue my medication list on the back because it won’t all fit in the lines provided, and then the doctor wants to send me for scans and tests and chat extra long because of my history, but excuse me doctor, I have a sinus infection.  But they don’t want to give me anything for that.  And then I go to pick up Prednisone at the pharmacy for the one hundredth time in a row and the pharmacist feels the need to tell me that I shouldn’t take so much because of the side effects.  Thank you.  I know them well.  But the alternative isn’t so good.  It’s death.  And then I read an article in the newspaper in the medical section from a doctor that says no one can survive with both their adrenal glands removed.  Well, he should do some research, or I should introduce myself because I am going on ten years now.  I try to find light in my rare condition.  It is a little neat when the student intern at Duke is so excited over meeting me and reviewing my case that he can not hide his excited giddiness.  It is kinda cool to be able to carry on a medical conversation, using all the right jargon, with friends that are doctors and surgeons, but if I got to pick, I would choose a different claim to fame.  What can I really do with:  A really extremely rare form of MEN2A, and always being the exception even within those rules of the disease.  Pretty cool to be the exception in the medical handbook or the specialists conference?  Ehh.  

Well, I am asleep by now.  And I never go through the explanations with myself while I am laying in bed.  But if I didn’t have that, I”d be pretty pleased with myself.  If I didn’t have all of that, It’d be great to sit up in the morning and be able to see what’s going on without popping in those contacts.  And I’d probably join some band, just for the fun of it.  And I’d sing to more people that just my seven year old.  And my husband.  And my sisters.  And anyone else I get comfortable with.  And anyone else who it around after I’ve had a drink or two.  And I’d wear skirts, not just in the summer time when I’m outside, but also when it is a little chilly outside in the spring and fall to show off my legs.  And I would be in and out of the doctor with my sinus infection medicine.  And I wouldn’t always scratch my damn back.  And, who knows?  Maybe, I would be a whole lot less content.  And maybe I would have less joy.  And maybe I wouldn’t appreciate my family and the days that I’ve got.  Because it isn’t really myself that makes me happy anyway.  So, ehh, I’ll just keep it all.  So, I am oh so sorry.  Please excuse my oh so messed up body.  That’s just me.  

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203 thoughts on “Oh, I am so sorry. Please excuse my oh so messed up body.

    • It really was! The first couple of months was like drug rehab! I didnt just want sugar, i felt like i needed it! BUT after i got through that, it is not hard at all! I am going on two years and it is not a temptation at all 😊 glad to meet you my sugar free friend 😊

      Liked by 1 person

  1. I am glad to meet such a rare person. I also have a bedtime thought routine. I start at my feet (the fungus under my toenail) and work my way up to the thyroid nodules and broken blood vessel in the back of my eye, making sure God knows he is in charge of it all. I can take all the healing he cares to pass out. I know you are right – going through these things sometimes results in a greater good that we wouldn’t have thought to ask for.

    Liked by 2 people

  2. I can definitely relate, but mine are a mix of symptoms and little things that no one understands. I’ve been committing each one to the Lord each night and giving it to him because I don’t have the strength to worry about. Thank you for sharing so transparently!

    Liked by 2 people

  3. Powerful piece! You are a rare gem in a collection of rare gems. I don’t have an exotic cancer like yours but I have my own claim to fame in my corner of breast cancerland. I am a 4 time survivor who has lived almost 27 years without Mets since the time of first diagnosis. I hold the record in my Cancer Clinic for this many bouts of breast cancer without ever getting sick enough to succumb to my disease. I would rather my claim to fame was something other than this but what can you do? I just enjoy the attention from the medical students.

    I admire your courage, faith, and sense of humor. I hope your health remains stable and that you continue to enjoy each day to the fullest.

    You

    Liked by 1 person

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