About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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The Invisible Illness That Is Not So Invisible Anymore

The Invisible Illness That Is Not So Invisible Anymore

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My invisible illness is not so invisible anymore.  I feel like I look years older when I look in the mirror and I am slowly watching my face inflate from the Prednisone.  There are mornings now that I wake up and my face looks like a round, flushed tomato.  I have stopped losing weight, I assume from the water retention in my face but I am holding pretty steady and not gaining much so I am fairly happy with that.  Yet even with no weight gain I am noticing the significant fat redistribution that is moving my body fat to my face and abdomen, so where is that fat coming from?  It most certainly is not coming from my butt or thighs, which is where I was hoping it would come from.   My feet and hands do look suspiciously thinner. Great, lovely thin hands and feet and a giant bobble head and round tummy.  In addition my hair is coming in full force now.  You may think I would be happy about this but it is quite sparse on my head, where I would like it to be coming in and instead I have to pluck hairs frantically each morning from not only my chin and upper lip but even my friggin forehead.  Thank goodness it is coming in blond so it is not too obvious.  My eyebrows are coming in quite nicely, well the unibrow portion of my eyebrow anyway but not the outside part where you actually want your hair to grow.  Pretty soon I will have to shave my entire forehead.  Oh my god!  I am turning into a bald headed, bobble head werewolf.   The hair on my head looks hysterical too.  Have you ever seen a child’s drawing where they draw the person’s head and then add only five or six lines of straight hair standing straight up on top?  That is my head right now with a bunch of small hairs spiking up all over the place.

 I do have one concern in that even though my muscle strength is improving each day I am choking once again whenever I swallow anything.  I am going to review the Heimlich maneuver with Danny and the kids tonight because there have been moments when I thought I may be in trouble and I am afraid to eat while alone anymore.  Drinking is worse than eating and I feel a little like I am drowning with every sip I take.  If I drink really fast I seem to be able to flush the fluids down but I have to be careful to stop gulping before I run out of breath because that last gulp will sit in my throat for a few seconds and if I inhale before it goes down I can count on coughing and sputtering for a few seconds.  I am so hesitant to let my doctor know about this problem as I know what tests will be sure to follow.

I can’t stand having my upper GI tract tested!  Ever since I was little I had a huge gag reflex when it came to swallowing medicine.  I think my poor mother must have had me throw up on her hundreds of times as a child whenever she tried to get me to swallow any type of foul tasting liquid medicine.  I had to have a cat scan of my abdomen and an endoscopy in the emergency room just this past June and I did not do a good job at all.  For the cat scan they brought in a huge glass of the most foulest tasting liquid and told me to drink up.  I almost started crying right then and there because I knew that this was going to be a huge problem for me.  I tried so hard too.  At one point I held my breath and sipped and sipped at the straw for as long as I could hold my breath and I looked at the cup completely expecting it to be half gone and the liquid had only gone down about a half an inch.  The nurse was giggling at my distress, complaints and groans and she ended up staying with me and cheering me on while I tried to drink it all down.  Every sip I would gag and dry heave, my face turning purple and my eyes bugging out of my head.  It was horrible.  The intern would stop in and remind me that if I couldn’t get the drink down in the next few minutes that he would have to stick a tube down my nose and pour it into my stomach.  The next time I am thinking I may just take them up on this offer as that actually sounds preferable to me than the 45 minutes of torture that I went through.  By the time I got the glass finished I had broken all of the blood vessels around my eyes from all of the gagging.  The intern then came in with a second glass and announced “just one more cup full to go.”  I almost passed out right then and there and then he started laughing and said that he was just kidding.  Seriously?  Why do I have to get the guy who thinks he is a comedian?”  Probably because it is something that I myself would have done.  Sigh!  All I can think about whenever I choke on anything is that the doctors are going to order more tests that require me to drink something gross.  I would rather drown on my diet coke than do that again.

I’m beautifully broken, perfectly imperfect, beautiful in my flaws. All together, I am a beautiful disaster.

I am also afraid they will order another endoscopy as that too was an awful experience.  I had heard how horrible that test is from my family and both of my brothers have acted out their experiences with endoscopies so that I could get the full effect of the horribleness of them jamming a large tube down your throat while you choke so hard you feel like your head will explode.  Needless to say I was nearly shaking by the time they wheeled me in for the emergency endoscopy.  The first thing they do is freeze your throat with the most horrid tasting spray.  I did pretty well on the first couple of sprays then the nurse accidentally sprayed my tongue and the taste sent me into a fit of gagging that had me throwing up all of the barium drink I had just downed for the CT scan.  At which point the nurses looked at each other and one of them mumbled to the other “this is not going to go well.”  I could have already told them that.  Then they sedated me and I literally begged them to make sure that I had enough medication to knock me right out but I was wide awake through the whole thing and did not feel sedated at all.  I did do a really good job with the endoscopy and I did the breathing like the doctor directed and tried to be really good so it would be over quickly.  I choked a little but I did much better than the nurses had predicted and I think they were all thrilled that I did not panic, get hysterical or throw up all over them.  Still not something I ever want to have to do again!!!  I will be letting my doctor know that I am choking tomorrow and I am praying that it will just mean an adjustment of my medicine and not some horrid test.

I better end on a positive note since that was a lot of complaining so here’s a funny moment of the day…  I clicked on one of those Facebook tests that tells you what your children will be when they grow up and it said that one of them would have a career as a “vacationer.”  First of all is that a thing because if it is I chose the wrong career.  Secondly, I think I know which one of my children it will be; the one who just texted me that he needs toilet paper in the bathroom after messaging me his grocery request list for brownies and chocolate milk.  LOL  It really is a beautifully broken life and I love every second of it but please, please please don’t make me have to do those GI tests again!

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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