Hey Dude, How’s Your Health?

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!!!)

169 thoughts on “Hey Dude, How’s Your Health?

  1. 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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  2. 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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  3. Love the laundry list of illnesses! Whomever has the most wins! Maybe you could get the Mayo clinic to sponsor a free evaluation? Either that or Virgin Airlines for a free ’round the world tour with free alcohol. Mmm, scratch the Mayo idea. The second one is much more appealing. We’ve all seen enough doctors!

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  4. Love your blog title. I have a few of these doozies too. Eating lean red meat three times a day (my doctor actually wrote that out on prescription pad) helps a bit. Meds…not so much so I threw them out. Hope you are well. Monty rocks.

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  5. I think i actually read this blog once when I was healthy, I vaguely remember the Fibromy-awesome name. I somehow managed to come back here many years later with fibromyalgia, myofascial pain syndrome, anxiety, depression, depersonalization disorder, and anemia. I’m so glad I ran into this site again, you give me and others like me the inspiration and motivation to keep our head up through our illnesses.

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  6. SHUT UP RODA! I read a book once about how your frame of mind can make you well or sick. I was kind of agreeing with what she wrote until the author states, If you have a good sexual self esteem you will not get a STD. WHAT! I was so mad I bought that stupid book. Let’s throw out science and common sense and only then can we be healed! This kind of ignorance is grotesque! I call it evil when others prey on the sick, so stop it Roda!

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  7. Haha just reading these posts, any excuse to plug something hey :)
    hard to get your head around living with chronic pain, If I could give any advice to somebody healthy, I would say really enjoy it, enjoy having the energy.
    Imagine if the doctors could cure us, do you think we would miss all this pain and sleepless nights?
    Good luck with your treatment Mary, you sound like a fab gal xx
    Victoria xx

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  8. I’ve been diagnosed with POTs, neurocardiogenic syncope, arthritis, lyme disease, babeisia, AD/HD, IBS, generalized anxiety disorder, heart palpitations, gastritis, and reactive hypoglycemia. I kind of think the probability of me having all of these things independently is kind of low… I’m sure most of them are related and there’s a bigger picture, but according to medicine I have/had only 2 actual infectious diseases and a gazillion “syndromes.” Thanks so much for your blog, you are affected so much worse than I am and have a much better attitude. Sometimes my symptoms aren’t so bad and I forget that I’m not normal and take on too many responsibilities… and then one day I won’t be able to get out of bed and fall behind on everything and feel so angry at myself. I have this fear that I’m secretly making up all of these problems in my head as an excuse to be lazy (how can I be normal one day and the next day not be able to stand up without losing my vision?), if anything its comforting to hear from someone who has done such a good job of accepting the cards that have been dealt to her, and doing her best to work around them. Thanks for the inspiration!

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  9. My overall condition is very characteristic of Chronic Fatigue Syndrome (with psychological overlay! HA Ha!) but now I have a collection of diagnsis from start to finish:

    Acute Bronchitis (yes that is what started it in Feb 2010!),
    low ferritin (borderline anemic)
    Asthma (then ruled out a year later),
    Idiopathic hypersomnia, Parasomnia (sleep talking with frequent arousals from deep sleep and mild RLS apparently)
    Non-allergic rhinitis (sensitive to airborne contaminates),
    Acute Sinusitis, Skin infections
    Generalized Anxiety (that someone will catch me falling asleep at work)
    Bipolar II (because medications make me hypermanic)
    Benzodiazepine dependance (geeeze — how did that happen?)
    Chronic Pain Syndrome (brought on by Benzodiazapine withdrawal),
    and tada, 2 years later….
    Polymyagia Rheumiticia (working diagnosis since March 2012). (A rare condition for a 37 year old)

    Hx Migraines, Whiplash injuries, patella syndrome, C-section, elective jaw surgery, frequent illness and skin infections, daytime sleepiness and unrestful sleep.

    Currently 12 pills a day, But have been on other meds and 3 inhalers. I wonder what my life would be like if I started the Prednisone in March 2010 like my doctor suggested and then I wouldn’t be on disability at all and recovered by now (it takes a year to recover from PMR)

    Having PMR and being hypersomniac is a full time job, with my son (I am a single sole guardian mom, former dietitian) in full time care including a nanny (from 7 am.) I go to Physio and massage 2 times a week, and once weekly: exercise kinesiologist, Play therapist with my son, and pain education. Every three weeks: Mental health counsellor, psychiatrist, physician and pain nurse, alternating weeks.

    Since I have been treated for Polymyaligia Rhuemitica (with Prednisone) I have started to get a lot better! I am on the upswing, but I could cycle down any time, especially as I drop medications! I am currently averaging 38 minutes of mild to moderate exercise a day, from having zero exercise tolerance, shortness of breath on walking and falling asleep several times a day.

    I hope that awareness of CFS continues. I learned about CFS when I had a breif bout of in my early 20’s when I was deconditioned from an MVA, overweight and inactive, so I learned about it then because I was crashing on my days off. It took me a about a year to get back in shape and was ok until I was 35 and then it started again.

    Check to see if you have PMR? It is a condition that shows a high C-Reactive Protein or high sed rate (inflamatory markers) and no rhumetiod factor that responds to high dose oral prednisone.

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  10. You made some respectable points there. I appeared on the web for the issue and located most individuals will associate with together with your website.

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  11. Not to be a buggy person, just curious, do you take anything specifically for the Fibromyalgia?
    It’s only, I was diagnosed with FMS like 6 years ago nearly, but in New Zealand its a massive struggle just finding a doctor that actually believes in it. so rather than actually finding something that could help manage it, I get given painkillers, mosty of which do nothing for the pain and… yeah at the moment i’m just looking around trying to find out any ways of managing the pain other than my current method which is “try to ignore it” so i was just wondering..?

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    • @whattowritewhen, I get given painkillers for FMS, too, and I live in the US, so I understand your frustration with having to rely on medication like that. It really is a struggle to find a doctor who will send you to a rheumatologist to have a check up and a test (aka, ruling everything else out). There is a medication that I can really can tell a difference on the pain scale and it’s Lyrica. It’s made just for Fibro, nothing else, and it works on the pain signals that are being send to your brain. I honestly can tell a difference in how I feel, but I don’t think there’s a 100% feeling of awesomeness or anything. Besides medication, aquatic therapy might help because it takes pressure off of your joints but still lets you stretch and move around. I get my exercise for the day by walking to the mailbox and back… But I hope the medication suggestion helps!

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    • Lyrica has made a huge difference for me. I am definitely not 100%, but it helps take the edge off so that I am able to work full time and live a somewhat normal life. Exercise is key, but we all know how hard it is to even get to that when you feel like hell. Check out foam rollers on Amazon and order the black one. I roll on that thing all the time (especially my back) and it works out all of the tension we carry in our muscles. Don’t turn to painkillers as a solution– sleep, hydration, stretching, Lyrica if you can get it, and moderate exercise will put you on a much more sustainable path. Wishing you lots of painless days!

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  12. Just thought I would drop a note for you…my wife was suffering from a lot of what you describe (Fibro/CFS). She was even told she had a parasite and some other off the wall things. Healthy 28 year old who runs 5 miles suddenly cannot get out of bed. Long story short, it was MOLD in our house. Problem treated and wife doing great. Just a thought to you and any others suffering as my wife once did, searching the internet for others and trying to find some hope out there.

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  13. Roda you suck. I know a child who has every disease Mary has and more. Do you honestly think his family wouldn’t go to the depths of hell to cure him? They would. You are a vile human being. I find you repulsive. I hate these internet trolls hawking their wares and possibly doing great harm to ill people. Thank you Mary I love your blog. I find great humor in your words.

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