A Rant About Unsolicited Crunchy Granola Medical Advice

[nezumiko]

I'm gonna start out by saying this isn't actually aimed at anyone online here. Y'all have been helpful, supportive, and generally awesome in response to my tales of sickness and respiratory crisis.

But be forewarned, this is a rant. A big, informative, and I hope, wryly humorous rant.

Comments

[photoash]

Amen!!! :) I can sympathize with the general population feeling like they can tell you how to treat yourself >_< I wear wrist braces b/c my fibromyalgia combined with my computer use makes my forearms hurt awful without them >_> and OMG ppl always ask me if i have carpel tunnel and if i'm going to get the surgery and laugh that maybe i should stop using the computer or ask me if i got into a fight or some other fucking bullshit and it makes me want to scream at them >_< or worse start questioning me about what's wrong with me >_<

I recently was exploring some more out there treatment options (I too already do chiropractic and massage therapy) and I tried cranial sacral therapy and the woman told me my energy was blocked and that all my pain was my body trying to get me to live in it more... and i kept thinking WTF woman O_O that's almost as bad as my mom telling me my arms hurt b/c i'm fat >_< >_< argh... /pant pant :D thanks for letting me have a minirant there myself >_< this kind of thing really gets to you especially if you're

[nezumiko]

OH man, yeah. Actually I did some cranio-sacral with one woman who really helped me, but the focus was entirely on spiritual and emotional healing, and it was really a special relationship. I've seen a lot of alternative practitioners, but when I do those treatments, time and again it comes down to healing my energetic self and connecting to spiritual and emotional stuff. The body-the body does what it's going to do.

And I hear you on the fibro, I have it too, at least according to a couple of docs. I mostly try to pretend I don't.

Also a give a big razz to your mom. Ask her what she'd say was wrong with your arms if you were skinny. *grr* I really hate the way the media have managed to make "obesity" be a cause of illness, instead of a freaking symptom, or just a state!

OK... *stops ranting* Big hugs!

[toshieri]

The fact that you've not yet killed anyone for pulling that shit is testament to your vast reserves of patience.

Because, after all, when you're in pain or discomfort, with a heavy dose of exhaustion, what you really need is some victim blaming and telling you what you *should* be doing about a problem, because *clearly* you're currently failing with it.

[nezumiko]

Thank you and AMEN! *loves*

[imabubble]

I loved reading this rant. It resonates with me. :D

[nezumiko]

*hugs* Thanks!

[masao888]

Wow! Really sorry to hear about your illness. I thought it was already bad enough when you had to postpone your birthday dinner, but it's gotten a lot worse. Glad to see that the prednisone kicked in. It certainly seems to have had quite an effect based on the length and... ah... intensity of the rant above.

Masao's medical advice: get lots of rest and don't feel guilty about anything.

Oh, well, one more thing you might try: freebased caffeine. I bet none of the crunchy granolas have ever suggested that to you before. Try it out; it can't hurt.

On second thought it could. Don't try it out.

[nezumiko]

Ah yeah, possibly the prednisone is, um, helping me to sustain my ranting *shifty eyes*

Your advice I will gladly take. I just hope I have my sense of smell and taste back by next Friday. Going out to a dinner that has no flavor seems like a stupid way to celebrate your birthday.

I think I'll stay away from the freebased caffeine for now,

i get it.

[anonymous]

My search engine found your blog because you mention CVID. Our daughter and my husband have CVID. I hate you're having a hard time. She just started a Z pak today because of walking pneumonia. plus restarted her GERD meds. She is cranky (she's also a teenager). Plus she's on subq gammaglobulin and she had to infuse today so she's all puffy. We take a sheet with info on CVID to all the ER's that don't normally see her (like vacation). But we also realllllly try to get to her docs and avoid the ER's. Last year she was on Prednisone from February to June for pneumonias. I hope you feel better soon. Keep ranting it'll make you feel better. plus it's probably alot cheaper than therapy.

Re: i get it.

[nezumiko]

You know, you just made me feel like my rant was worth it. You're the first person I've heard from who's life is touched by CVID and reads my blog. Thank you!

I'm really sorry to hear your daughter is sick. I was still undiagnosed when I was a teenager, so I was just the sickly asthmatic kid who was always coming down with things. And man, yeah, the stupid GERD! I think the albuterol makes it worse, because whenever I have to increase my nebs, I have to go back on the Prilosec. Hope the Z-pack helps her soon. I'm looking at a 30 day course of antibios for this flare up myself.

That's really smart, having a printout on CVID ready to hand the ER. I am totally stealing that idea from you.

I think there are some genetic studies on CVID, are your daughter and husband participating? I'd imagine a closely related pair like that both with the disease would be really interesting.

Re: i get it.

[anonymous]

Oh my goodness, I have been complaining about the very things you have for a long time and finally someone verbalized my frustrations. I am 44 and have been living with CVID for about 5 years that i know of. I may have had it earlier and was not diagnosed properly. Anyway, it is very frustrating to have to explain why you live on antibiotics and to have people (including my family) tell me that i need to try to get better on my own. I finally have a doctor who treats me immediately without question and is keeping me well with antibiotics. I could not tolerate IVIG treatments and had to discontinue several months ago. They didn't make me any better. It is like a living hell dealing with this disease and virtually no-one understands. Thank you for sharing your personal thoughts. I just happened upon this site and i hope to return and share more. Take care of yourself and know you are not alone. God Bless...