Author Topic: You know you have Sjogren's when....  (Read 1110 times)

scape1973

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You know you have Sjogren's when....
« on: May 06, 2016, 10:47:22 AM »
Im laughing at myself, not any awful and just downright annoying, and/or serious health conditions and am just sick of hearing myself whining and complaing to family members who are probably sick of hearing it (though I'm blessed, due largely to a divorce several years ago...haha..(but seriously)..not to have many who actually voice this.  Anyway my list involves related (to Sjogren's if not directly caused by)  health issues that have all sort have run together in my head but I'm guessing I'm not actually alone here.  But just in case...the 'you' in the following strictly refers to 'me'. But please add to it!!  Also please excuse typos/spelling issues below that I missed, Im typing on a tiny phone screen.



....you are continially fascinated by the miriad of colors you never before realized your toes can turn.

....you have so many 'associated' diagnosis and so many medications that you can no longer tell what is a symptom, what is a side-effect, and whether or why it even matters.
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...you find yourself having to hold yourself back anytime 'healthy' person around you complains of any 'normal' physical  ache, pain , or otherwise 'normal' ailment (you think you have a head ache? You dont know what a head ache is until you try IVIG...have it shoved into you in two hours" I've managed to supress these urges and btw get ivig but in 8 hrs...amd almost no more headaches..just an example)...followed by a mild feeling of  self-ceneteredness-related shame..  Or not. Depending.

...have come to hate the word paleo (I'm sorry...I cant even really explain this one completely...am sure it is very hepfu to many...please no flaming me!).

...remember when showers were not only a daily occurance, but enjoyable!  (mainly P.O.T.S.-related)

...You wonder when being told "but you're looking good" became something that made you want to punch something/someone. (Not endorsing actual physical violence).

....Your significant other finds amusement in some of the vast medications and some of the more interesting effects.  (Probably should give an example: just started florinef...for some reason it has made me a little...loopy...yesterday we were talking about who knows and out of nowhere I look into another room and yell 'hey guys come here!'.  I then look at my husband, who looked as confused as I suddenly felt as I realized neither one of us had any idea who it was I was calling to.  My kids were outside...finally I traced it back to a train of thought Id had a little bit earlier, as I'd seen signs of mice I'd thought were no longer an issue, but my new mouse traps (my cats) avoid the area due to the proximity of my dogs...anyway I guess I have aort of mental/physical delay between the thought and acting on it (calling my cats).

Ok im sure I could go on but dont want to make you sick of me too!


« Last Edit: May 06, 2016, 01:48:12 PM by scape1973 »
42 years...funny I've been thinking Im 43 all year.  Too tired sore and whiney  to list anything else.  :D

irish

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Re: You know you have Sjogren's when....
« Reply #1 on: May 06, 2016, 12:45:05 PM »
I like the second one the best. The longer you have autoimmune disease the more that one holds true. I am to the point that the medical community may start to with hold some treatments as I am not employable or valuable to society.

I am wondering if they stop my IVIG and other drugs if I will just drop dead or if I will live on in infamy just to drive them all crazy!!!!! Who knows, maybe all these meds aren't doing anything. :o

You need to have a sense of humor to have a chronic health condition. Good luck. Irish


mollie carey

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Re: You know you have Sjogren's when....
« Reply #2 on: May 06, 2016, 01:14:32 PM »
My book club just read  "Let's Pretend this Never Happened" by Jenny Lawson, a woman who has autoimmune disease and mental health issues, and she talks about much of what your saying. People saying you just need to be happy?? and she says, wow what a concept, maybe I should tell someone with cancer, they just need to be positive....

People can't see autoimmune disease and are not often educated about it or compassionate about. I feel people battling depression and/or anxiety have if even worse, because people think the should just snap out of it.

I agree on the meds, I wonder what is worse the side effects or symptoms, and/or are they the same. Also hate paleo and gluten free- even though my daughter is gluten intolerant and gets urticaria is she eats it.

I do think it is good to be able to see the humor as you are, it makes it less scary in some ways.

This made me laugh - thanks!

Mollie


LucyD

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Re: You know you have Sjogren's when....
« Reply #3 on: May 07, 2016, 08:42:38 AM »
Scape I love your post. Thank you for making me laugh. Yes, agree with Irish - relate to the second one.

Here's another one --

When you feel even worse than "your normal" you never know if you are REALLY sick with a virus/bacterial infection or if it is just part of your "normal" autoimmune disease. And you just trudge through anyway like you always do because you feel like sh*t most of the time anyway. 

I am starting to HATE the word paleo too!! Especially because I long for cake, bread, donuts, toast, pasta, pizza, ice cream, cheese. This is becauseI truly do have less pain and feel much better when I eat many vegetables, some fruit, and some meat and no dairy or wheat. But boy does it get OLD, boring, and difficult.

Mollie Carey - thank you for the book information. I want to read that book, "Let's Pretend This Never Happened."

LucyD

Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65