Thank You FibroFolks! Chronic Pain and Taking Time to Be
I am preparing to leave on vacation, but I would be remiss if I did not take time out of my evening to stop and give thanks for the outpouring of support I have received over the past few days. Within minutes of my last post, my inbox, comment queue, and Twitter mentions list were filling up with words of advice, personal experiences, and encouraging bits of scripture and verse. Although I have had previous opportunities to see members of the fibrofolks community reach out to lift and encourage, I have never been as moved as I was this week.
Since my first message regarding my last post, from one who has experienced first hand the support of fibrofolks, I've been bragging to my sweetie, my parents, and my friends about the sincere, and wise allies I have in the chronic illness community. My heart is humbled by your experience, your optimism, and your insight. Although my back is still hurting, I have been made able to better endure the pain. It feels more muscular, and less skeletal. And I feel less aware of the pain, and more aware of all I am still able to do (and how blessed I truly am).
While I am away on vacation, remember these words of advice from my friend Benia Zouras, of The Table.
Enjoy what you can, whether it's quiet time outside or getting lost in music or mindless television. Try to have a day where you don't have to worry about appointments or chores and just BE for a while.
Last night I followed Benia's advice and took time to just be. I curled up in a comfy chair family friends recently gave Daniel (it's rapidly becoming my favorite), made a half-dozen Genius playlists, and sang my big heart out.
While we're on the subject of being, head over to ChronicBabe to catch up on the Be Here Now Experiment. And, while we're on the subject of being here now, head over to (insert preferred music purveyor here) and give Ray LaMontagne's "Be Here Now" a listen (you will melt).
And while we're on the subject of Ray LaMontagne, I'm off to give him a listen and get packing.
Thank you again for your prayers, your encouragement, and most importantly... your strength. I know prayers are answered. I know encouragement is power. And I know strength is contagious.
Please Help! Fibromyalgia and My Breaking Point
Fibrofolks, I need your help. Desperately. But first I ask, that like any good friend, you allow me to vent... a necessary step in identifying just what sort of help I need.
I hate feeling like a fool each time I go to the doctor. I hate invisible pain from an invisible cause. I hate being unable to drive without nearly vomiting from pain. I hate hurting so badly I can't maintain my composure. I hate when pain demands attention. I hate that I can't go more than an hour without mentioning my pain. I hate that I'm a wuss with new pain, yet am nearly unfazed by fibromyalgia and arthritis pain. I hate that walking, standing, sitting, reclining, and sleeping all hurt. I hate pain that radiates and disturbs my equilibrium.
I hate that I hate things. But I love that the things I most despise teach me the most-needed lessons.
Apparently I am a slow learner.
Anyway... after struggling with mild to immobilizing spine pain for nearly a month, I am reaching a point we all know too well. When your body and your mind battle to determine just how much you can endure. When your mind fears for your sanity while your body punishes your nerves. When you turn inside and wonder how much longer you can live like this. When you just need relief.
I leave for vacation on Friday, but the thought of a plane ride has me full of dread. No doctor has been able to help me, and I just keep living life like normal (mostly). My chiropractor provided two likely causes after examining my x-rays... but I am still in extreme pain. Please help me!
Have you suffered from extreme spinal pain?
Mine is centered in the middle of my back (top to bottom) on my spine (and a bit to the right). It is constant but is made worse with movement. If I lean forward and rest my elbows on my knees while sitting I feel a bit of relief. Standing just right feels bearable, as well. Sitting is a nightmare, but it seems the best way to deal with the extreme dizziness I feel as the pain radiates throughout my body.
I apologize for the mediocre writing and the negative tone. And I look forward to any advice you may have. I just cannot go on feeling this dreadful.
My action plan for the rest of the week consists of:
- Family Doctor follow-up. Leave with prior chest and spine x-rays.
- Appointment with some sort of orthopedic doctor.
- A massage. (It hurts beyond belief to lay on my stomach, but somehow I end up relaxed.)
- Continue to be grateful for a job that allows me to get lost in details and forget myself.
- Offer my appreciation to the many examples of discipline and strength that motivate and humble me.
- ?
What do you recommend I add to this action plan? I am open to all suggestions.
Thank you!
To those of you who have already shared your advice and experiences, I thank you for your time and support. I will follow-up with you when I get feeling a bit better.
Fibromyalgia and Endless Appointments and Judgmental Folks
Sometimes I feel insecure about the quantity of medical appointments I have had this year. But today I realized something.
If I don't jump all over minor issues, as they arise, I'll be mugged by a flare up... eventually. So, to those of you who don't understand the nature of chronic pain conditions, and think I'm a wuss who spends too much time with a doctor... keep it to yourself. Please.
Your judgments don't enrich the world. In fact, I don't think they do anything but reassure you that your over-scheduled, passive-aggressive life will in fact make you better than me (although the fact that you spend your time judging me shows quite candidly that you don't actually believe that).
And, as for me, I will work on caring less what the judgmental crowd thinks. I know I'm a "grown-up" now, and should be over caring... but I'm not.
So there it is, short and not-so-sweet... another life lesson from the shameless schoolmaster that is chronic pain.
A Year Ago on My Life with Fibro
Being Overwhelmed with (not by) Fibromyalgia: This seems to be a trend. Not just with this blog... but with my life since March. I begin a project with an idea, I plan it out (an extra-essential step for fibrofolks), and I execute. I do not, however, persist. I put things on hold. I rest up. Perhaps I start something new. Finally, I revisit the project or task when my brain regains its capacity for said project. This routine has an obvious, and potentially ruinous, flaw.
Being Overwhelmed by (not with) Fibromyalgia: I plan simply to feel prepared. I do not plan to know what I will be doing when and where. Fibromyalgia makes the latter type of planning nearly impossible. And for that, today I hate it (fibromyalgia, not the aforementioned fact). I am overwhelmed and feeling out of control of my life...
My Fibromyalgia Treatment Plan v2.1.1: Dr. Delilah became my chiropractor through an odd string of events I can assuredly say was not a coincidence. Since my first visit I have not only regained mobility and increased my mental clarity, I have come to pay more attention to my body and the things it tries to tell me. (Does anyone else feel like their fibromyalgia makes them keenly aware of their strengths by making them face their weaknesses?)
Fibromyalgia and the Flector Patch
Per my chiropractor's advice, I went to visit a medical doctor Friday morning... except mine was out until today, so I saw the nurse practitioner. Long story short, she thinks I've rapidly developed scoliosis. And she thinks this rapid change in my lower back is causing my mid-to-upper back to pull to the right. Or something like that. She says it's hereditary (even though none of my family has it). And she says nothing can be done (even though she recommended two treatments).
The first treatment is one my chiropractor recommended nearly a decade ago, for another ailment with similar symptoms. It's herbal, helpful and heavenly in its effectiveness. But I'll talk more about it in a later post.
The second treatment is the Flector Patch. And it seems to be working. Best I can tell, and based on what she explained, it's an anti-inflammatory patch for injuries, sprains, gnarly bruises, and the like. It's super sticky on one side, fuzzy on the other, and about 4"x6". You simply put it over the inflamed (or, in this case super-painful) area and it works its magic. You wear the patch for 12 hours, then take if off for 12 hours, and so on.
The first day I didn't notice a significant impact... Jenni Prokopy, the Founder and Editrix of ChronicBabe, had a similar experience. I did, however, notice it felt kinda warm and a bit tingly. The second day I felt more flexible and less stiff in my mid back. Initially I thought this may have happened anyway, that perhaps my back had decided to get better. But, during the 12 hours between wearing the patch I notice my back grows more stiff and the pain increases. So I know the patch is providing relief. Today was the third day, and I am officially a fan of the Flector Patch. It is convenient and side-effect-free (thus far), but I am worried about the cost. The nurse practitioner provided me with over a week's worth of samples, and each came with a $30 off coupon. Apparently these suckers are pricey. But I've learned, and continue to learn, no price is too high for mobility. And I continue to be grateful for my HSA.
Stay tuned. I will let you know what my final verdict is regarding the Flector Patch. As for Jenni, she said short-term use of the patch solved a tricky pain issue. I hope my experience is as effective as hers. And I pray the Flector Patch improves my condition quick enough to prevent a fibromyalgia flare.
I'm K8. I have fibromyalgia and I am grateful for it. (Yes, you read that right.) 
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