Comments on: “My Leaky Body”

By: Aya

Aya — Thu, 04 Oct 2012 07:47:40 +0000

Thank you for posting this. It’s so easy to believe that you’re alone. I’ve been dealing with doctors for 11 years now and I’m actually planning to get up early tomorrow, put my skates on and run up and down stairs on my toe stops to try and aggravate my hip problems. The hospital doctors have never seen me when it’s bad and I’m scared that they’ll kick me out as a drug seeker if my MRI results show nothing unusual. They wouldn’t be the first to come to that conclusion.

By: Lilirose

Lilirose — Sat, 29 Sep 2012 22:03:36 +0000

Wow, Shannon, once again you articulated so much of what I feel. I’ve been “diagnosed” with fibromyagia, which seems to be doctorese for “faking pain”, in my experience…though recent symptoms show that it *has* to be something else. I’m just about to start with a new doctor and I pray I’ll be given tests instead of being ignored.

Thinking of you…

By: Carol the long winde

Carol the long winde — Thu, 27 Sep 2012 12:50:36 +0000

And because I am in the US this basically took all our money, too. (And the first treatment I got triggered Crohns disease. good times.)

By: Carol the long winde

Carol the long winde — Thu, 27 Sep 2012 12:49:18 +0000

I feel you – I had a chronic condition that the doctor told me that she didn’t believe me until she saw my blood tests – I was severely anemic, reported falling asleep behind the wheel, heavy periods (which because of the way heavy periods were defined to me I couldn’t honestly say I had…but then when I read the full definition, I had heavy periods.) I finally passed out in the doctor’s office, and then she started treating it more aggressively. I switched docs and he doesn’t believe me either – despite my chart! Why go into medicine if you assume people are lying?

By: Rosemary

Rosemary — Thu, 27 Sep 2012 08:52:56 +0000

I’m writing this on my phone at work so I hope this goes well.

My mother had/has trigeminal neuralgia, which is aka the suicide illness because the pain can’t be controlled and the grand majority of patients with TN end up killing themselves to end the pain. She went so many years undiagnosed, being told she had multiple sclerosis, being thought of as a liar trying to get pain pills. Eventually she managed to get in to see a neurologist who happened to specialise in TN and they were shocked she had gone on for so long. After years of being in uncontrollable pain, she ended up electing to have this neurosurgery which has a massively high mortality rate because of how risky it is, but she said she would rather have died on the table trying to get relief, than go on living in that pain. I remember it all very well because I was 16 and it was in the weeks leading up to Christmas, so instead of knowing what Christmas had in store, we all had to know for sure what kind of funeral our mother wanted.

She did end up living and now is pain free, which is amazing, but I absolutely understand your frustration in going so long being shuffled from seemingly uninterested doctor to another. I have followed you since around that time because I found solace in the bod mod community. I am sorry to know about your situation, I genuinely hope you find a better medical team soon.

By: Ashley

Ashley — Thu, 27 Sep 2012 02:53:28 +0000

Thanks for posting your experiences with chronic pain. As an RN, I see both sides of the spectrum in my everyday work. Yes, it is hard to believe that a patient’s pain is 10/10 if they’re sleeping or laughing and joking on their cell phone, but everyone’s tolerance of pain is different. I sometimes wonder if patients think I won’t give them pain medicine if their pain isn’t “high enough.” Heck, you can tell me that your pain is 0/10 but you still want pain meds to keep it that way, and if you have pain meds available, I will give them to you.

Also, I’m relieved you found a doctor who’s a specialist in treating your condition. The frustration with finding a diagnosis and treatment can be emotionally draining to say the least. Your experiences make me appreciate how fortunate I was to find a specialist AND treatment after dealing with my rare disease for only a few months.

I wish you nothing but love, support, and mental strength in dealing with your condition…

By: HJP

HJP — Wed, 26 Sep 2012 18:13:15 +0000

Thank you. Your writing here is one of the most truthful and understanding pieces on the medical problems people face now. I have a few issues myself, and I have been bounced from doc to doc, hospital to hospital, and had to learn to play “the game” to get treated. Although most of my conditions are not cronic, the ones I’m left with now are only manageable because I have learned about my body, how to fix myself, what I need, and how I can get a doctor to get me a ‘script if I crash and need one. I worry about my health a lot, it affects me every time I think of changing my life now. Whether I should buy a ‘new’ car because I have trouble getting in a out of the one I have. Whether I can afford to do that, becuase what if I get sicker, lose my job, and can’t afford a car anymore. I wonder if I will live to see the house paid off. I wonder if I will retire or die first. I try to live in the now, make choices to live like I want to live, but also like I might not. I worry now that I took a new job, I may die there. I work alone, behind gated access with an alarm system, even if I called 911 for myself, it would be a miracle if they got to me in time. I have made plans to disarm and unlock everything if I feel sick, just in case. I could probably go on disability, but tthat would require so much poking byt he docs again I don’t think I can handle it. Funny eh? I would probably get sick enough to end up in the hospital from the stress of getting on disability, and actually show how sick I am, and instead I hide at home and manage my illnesses and work to survive.

By: Billy Pilgrim

Billy Pilgrim — Wed, 26 Sep 2012 16:45:57 +0000

Thank you Shannon.
Know that by sharing yourself throughout your life you have been, and continue to be, a helpful voice to others.