Here’s what I’ve been diagnosed with:
Chronic Fatigue Syndrome and Immune Dysfunction Syndrome/Fibromyalgia
Lyme Disease
Chronic Migraines
Postural Orthostatic Tachycardia Syndrome
Irritable Bowel Syndrome (Sexy)
Anemia
Supraventricular Tachycardia
Restless Leg Syndrome (Not a made up thing, I SWEAR)
Gonorrhea (Just kidding!!!)
I got the fibro, IBS, low potassium, Meniere’s Disorder, Major Depressive Disorder, GAD, PTSD, back pain, neck pain, and on and on. I feel your pain and join you in your quest for more research and better care and understanding!!
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My main squeeze, he suffers from Fibro as well, and while his list isn’t the behemoth that yours is he is still in a significant amount of pain constantly. Reading a few posts from your blog has been really enjoyable. We think that there are a lot more chronic illnesses in play for him, and reading your continued humor has really brightened my day!
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Dude! Thank you for reading.. And writing. Sorry to hear about your main squeeze.. I can say that having a partner who is supportive and encouraging is so important when you’re sick all the time, and it sounds like you’re that way for him, just in taking the time to read about his illness. So way to go! I hope both of y’all will keep up and check in. The more stories and honesty we share, the better. Best to yall,
Mary
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Thank you! I plan to have both of us keep up since I think some humor could help him. A lot of the blogs that he’s found about chronic pain in general can be pretty sad (which is fine because it sucks balls to be in pain) but I think seeing how you tackle it with humor will help. I’m also trying to understand, and it can be hard since I don’t know what it’s like to be in pain constantly. Thank you for sharing your humor with everyone, it’s really refreshing.
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I know how he feels.. There are a lot of outlets out there but they often emphasize the sad which isn’t exactly helpful. The humor is as helpful to me as it is to others.. Being able to laugh in spite of the shit from illness takes away some of the power.. So tell him to hang in! And know he’s not alone. Props to you for at least trying to understand.. Often that is enough, and you’d be surprised how often people don’t. Y’all keep keepin on, I will do the same ;) ask your boyfriend if he likes the name #shit turd disease :)
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Just in everyday people don’t, he has to use a cane right now for the change in weather, and people look at him like “But you’re young. You cannot possibly actually need that.” And then people see me help him up, and carry the car seat, and grab his cane because he can’t bend down. And it baffles me that they still look over at us like it’s an act. Because yes, he so loves me needing to carry so much right now. Ah, sorry I’m a babbler. Anywho, I know I’m going to use #shitturd disease so much now. I can tell he thinks it’s funny. It’s wonderfully refreshing to talk to you. and I hope that you’re having a nice weekend.
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I despise being asked about my health. It’s this huge issue that seems to overshadow my life to the point that sometimes I feel it’s all there is about me. I have Crohn’s disease as well as IBS, and you’re absolutely right, neither of them are not topics for polite conversation. Why couldn’t I have had one of those chic diseases that get black tie benefits thrown for them? I’m on a first name basis with all the employees at my local pharmacy, my nightstand is groaning with the number of prescription bottles on it and the CT scan crew at the hospital gave me a frequent customer punch card as a joke. Admittedly it was funny, but also a teensy bit sad. When people inquire about my health, they don’t really want to know but they don’t know what else to say to show they care about me. So I try to remember the sentiment behind the question and answer in kind. But isn’t it a bummer when the platitude ‘At least you have your health’ doesn’t apply to you? By the way, I loved your use of the word ‘supine’ in your R and R and R post.
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Me too dude, I’m fricken falling apart at the seams. I injured my knee last month eating a bowl of spaghetti, not kidding at all. I’m turning into a crackly old hunchback woman with no cartilage and stone muscles. Your blog is making feel better though.
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This blog was… how do I say it? Relevant!! Finally I have found something which helped me.
Cheers!
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I have Crohn’s disease.. also very sexy :(
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Ugh fibromyalgia is the worst! I was diagnosed my freshman year of college and had to work 3x as hard as everyone else to get through. I was also diagnosed with lupus a year later (both of my parents have it), so that was cool. It has been so hard filling all of the sick time (you know, the thousands of hours we spend in bed in pain while our friends go out and live)…it is partly why I just started my own blog. I’d love to connect some time to discuss your experience with Lyme’s disease (I think I have it honestly), and also possibly collaborating on something. It is so hard managing my “made up” disease with work, friends, family, boyfriends, etc., and I know there are a lot more of us out there.
sending you good vibes (and not the painful fibro ones that zing down your legs),
Kathleen
PS Love the blog name…I cried the first time I counted how many pills I take a week…blurg. My blog name comes from living in San Francisco (we have a lot of fog hah) but also that the lovely fibro fog that descends daily.
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I feel part of your pain. At least on the fibromyalgia and restless leg syndrome part. IT’S NOT MADE UP!
I know in my personal experience, day to day, it’s hard to deal with our body’s failures and lack of normality. But it is a comfort in a twisted way to know there is someone just as messed up as I am (even though I wish you wouldn’t have to suffer so much!). Wishing you the best and can’t wait for more blogging :)
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