Wearing jewerly is hard when you have fibromyalgia: all those finger-wearying clasps; the weight on your neck or other joints; metal sensitivity.

I know I haven’t been around my blog for awhile, but I’ve been staying busy. One of the things I’ve started doing more often is crafting – not an easy feat if you have hand issues. (The key to making jewelry with fibromyalgia is taking frequent breaks. I found that out the hard way.)

I started playing around with the idea of making jewelry that was easier for people with fibromyalgia and related conditions to wear. Heck, your sense of style doesn’t drop off the edge of the earth.

One of the first things to consider in this type of situation is what kind of obstacles people face. I thought of a few that I know:

  • Taking jewelry on and off. Why does everything have a tiny little clasp? Even when they don’t, jewelry still isn’t easy to take on or off. Even pulling a necklace with no clasp over your head can be hard on the neck or shoulders.
  • Skin sensitivity. Many people have metal sensitivity, and I sense this is particularly true for people with fibromyalgia. How can we minimize the amount of metallic, scratchy, or other irritating materials against the skin?
  • Weight. Some of the prettiest jewelry is also big, clunky, and heavy. Nice for a little while, then painful.
  • Interference with daily activity. I really like a bracelet I made recently, but I usually have to choose between it and a watch. I can’t write with jasper beads pressing against the underside of my wrist. Disaster.
  • I’m sure there are more – I just can’t think of them all right now.

I’m still experimenting with different techniques (one of which my mother was not fond of, the other she gave her wholehearted approval to). Here are a few that I’ve found particularly helpful:

  • Make it easy to take on and off. Elastic, velcro, whatever. Or these delightful little inventions I found – magnetic clasps. I don’t know how I didn’t discover these until now. They’re just what they sound like – sturdy little clasps that don’t require you to fiddle with a zillion different things. You can find them for a lot of money at Michael’s, or wholesale at Rings n’ Things.
  • Use ribbon or fabric instead of metal chain. Much softer. Also, if you can incorporate already-worn fabric, then it’s even softer. (There’s some already featured on my etsy store. I plan to add more soon.)
  • Use bamboo and wood materials, or minimize number of beads. This significantly lowers the weight.
  • Don’t forget to make it pretty!

I hope this helps other people. You can find my attempts at www.etsy.com/people/RogueCrafter . Those that are “arthritis/fibromyalgia friendly” and noted in the item name. (I play around with more “conventional” methods as well.)

I’ve read lots of reports on how bicycling is a highly recommended exercise for people with fibromyalgia. I’ve been looking for more resources, but have yet to find a comprehensive book on bicycling and fibromyalgia. (Let me know if you find one!)

However, I did find two blogs of interest. One is of a woman, Paula Werme, who attempted a ride across the United States. (She knew when her limits were – AND she made 3,360 miles. Impressive progress). Her site is rather “old school,” so you have to scroll down to read newer entries.

Some interesting points:

All of the above said, the biking is getting better. We’re averaging more miles per day, although the totals are creeping up slowly. We didn’t have ANY 45 day miles at the beginning, and now I can do one that includes a major climb. We’ve done 60, but it was tough. Coming into Missoula was the first day we’ve had on the trip with the prevailing winds, the terrain, and the weather all in our favor, and we sailed into town with an average speed well above our other days – over 11 mph. Compared to our first few days where the averages were 5 – 6 mph getting used to the hills, that’s pretty good.

Dateline, August 11. Still in Missoula, after a car trip 600+ round trip miles to Yellowstone. We head out tomorrow for Great Falls, where Ric and Hannah leave and I continue on by myself.

It doesn’t take a whole lot of miles in a car to remember that you have Fibromyalgia! I was a bit creaky on the trip, and still am somewhat, but I was pleasantly surprised to find that walking around Yellowstone was much easier now that I’ve got some leg muscles – so it does pay to exercise….

I get the idea that if I can get comfortable on a seat, I can easily pick up 10 miles a day just from that! The wheat free/dairy free diet is simply not working – can’t consistently get supplies, and my appetite has been for a fair amount of food – also I’m sick to death of hash browns.

Paula Werme’s story has some very interesting insights into bike seats, in fact. I have a feeling that’s something I’m really going to have to look into.

Another interesting blog is by a woman with fibromyalgia who does triathalons. I haven’t read all of her entries, but you can check them out for yourself on the Living *WELL* with Fibromyalgia blog (aka “tri beyond limits”).

Has anyone else explored bicycling with fibromyalgia? I’d love to hear about your experiences, or any resources you may have found.

I’ve had some first rate truly happy moments these past few days. There have been a number of contributing factors: beautiful weather after a major heat wave; expectations of Fall (my favorite season); good food; seeing loved ones; being able to walk and exercise properly again; and having low pain levels.

All in all, a time worth giving thanks. It makes me want to celebrate.

I’ve been doing some celebrating lately. Rolling the windows down and letting the breeze hit my face while my stereo plays Pat Benatar’s Heartbreaker. Singing along. Making up silly songs. Laughing at little things.

Those who live with me, who have seen me with bipolar mania, sometimes get a worried look in their eye when I’m exhibiting these behaviors. In another situation, making up silly songs, wiggling and dancing, and laughing too much can signal that I’m in a manic episode.

Mania can sound fun, but it’s more like you’re running on about 10 cups of coffee and a packet of pixie stix. You know you’re a bit out of control, you temporarily feel great, and you know you’re going to crash really hard.

I’ve gotten to the point where I can tell the difference between what it feels like to be manic and what it feels like to just have a good day. It’s a fine line – it’s like learning to tell the difference between depression and healthy sadness/grief.

How do my loved ones tell if I’m manic or if I’m happy? There lies the dilemma. We’ve yet to figure out a good way to do so. Asking if I’m manic usually leads to some sort of angry outburst and denial (a sure sign that I’m manic), and sometimes something untoward happens (like the time I bought a mouse – long story). Asking if I’m manic and I’m in a good mood sometimes feels like folks are invalidating my good mood. “I’m happy – why can’t you see that I’m happy?” It’s a touchy subject.

The best we’ve managed is for me to let loved ones know if I am feeling manic (so they can help me out if need be), and also to reassure them that I am having a bad day. I try not to let my own sensitivity about bipolar get in the way. We’ve also worked on having a good communication system, so if something does bother me we can work it out.

I was recently introduced to Rudyard Kipling’s poem, ‘If’. I usually avoid Kipling because of his racist and imperialistic tendencies. However, I quite enjoyed the poem – to a point.

My favorite bit:

If you can dream—and not make dreams your master
If you can think—and not make thoughts your aim
If you can meet with Triumph and Disaster
And treat those two impostors just the same

I don’t think he intended the Buddhist themes, but I enjoyed them.

What I most certainly did not like was the patriarchal conclusion of the poem. Kipling concludes that if you can do all of these noble things, then, “You’ll be a Man, my son!”

I took the liberty of re-writing the poem with a modern (or post-modern?) riff on the poem. I don’t think Kipling would approve. I’m fine with that.

If you can strive for peace,
Yet not demand it with harsh words;
If you can hold compassion for others,
Yet not grow to hate yourself.
Love yourself,
And not let self blind you to the world;
If you can see the light in enlightenment,
Yet not be consumed by striving;
If you can be visited by sickness,
And not let the darkness make you ill;
See old age coming,
And greet it as an elder;
If you can meet with death,
And still taste the sweet in life;
If you can see injustice, ever work for change
And not let your heart grow hard –
Then savor every moment,
For you know not your own strength.

Checking email.
Deleting spam.
Checking webcomics: QC, Girls with Slingshots, Wondermark…
Checking email.
Staring at the weather, in triumph and in grief:
Record temperatures make me frown.
Checking email.
Deleting spam from Dr. Howdy
and porn of all flavors
and viagra for le$$
and pleas from someone’s cousin in Nigeria, who’s rich.
Checking webcomics that haven’t changed.
Checking email, always checking
in this digital world of instant
communication: email, facebook, even twitter.
If that counts as communication.
Why, when I check email –
Why is there nothing, absolutely nothing
From you.

I’ve been absent from my blag for awhile, due to an increased need to focus on health care…and then a desire to try to return to some volunteering or other activity to fill my days.

I’ll try to post here occasionally, but it probably won’t be on any type of schedule.

I’ve also re-discovered the wonders of writing poetry as a healing/coping tool. Recent events have reignited my enjoyment of it. Limmericks in particular are a fun, quick way to let off steam. I may be posting the occasional silly poem here as well.

I recently had to do the run-around trying to get the number for the 24-hour nurse advice line for Federal Blue Cross Blue Shield (BCBS). I believe the number may be different for different divisions of BCBS, and you have to be a BCBS customer in order to talk to the nurse. I had to register for Blue Health connection and all this other nonsense when all I wanted was to call the nurse as soon as possible.

In order to help others, I’m posting the number here. I do not endorse Blue Cross Blue Shield in any way, nor guarantee the medical advice you may receive from the nurse on call. You take full legal responsibility if you call this number.

The number listed on the Blue Health Connection website for Federal BCBS is 1-888-258-3432.

I could tell you the long story about how I’ve been to the pharmacy four times in the past two weeks, about the number of medical appointments I’ve had, about the gum disease I’ve been diagnosed with three days after getting my teeth cleaned, or about the new issues with my foot. I’ll stick to a quickie about the foot.

I haven’t been to the doctor yet due to the holiday weekend, but I do believe I may have sprained my foot while standing on tiptoe to get some ziplock bags. I find out in a few hours when I go to my podiatrist. Regardless, my foot is swollen, sore, difficult to walk on…not fun. Oh, and it’s the same foot as the neuroma. I’m not sure if that’s good (at least I have one foot to walk on) or bad (it might complicate the neuroma just when things were looking up). We’ll leave it at neutral for now, with the added caveat that it’s a pain in the tuckus.

I’ve been following the RICE method, which seems to be helping. It stands for Rest, Ice, Compression, and Elevation. It all seems to be helping, as the swelling has gone down considerably. It does mean it’s difficult to be at the computer, as my foot is not elevated. So I’ll leave you now, and try to update on Thursday with more details about what the heck is going on.

I don’t know if this is more of a review or a testimonial. Let me just say that I find Belleruth Naparstek’s healthjourneys guided meditation CDs an amazingly helpful coping tool.

I typically practice mindfulness meditation, which involves concentration and focusing on particular sensations in the body without an attempt to control or influence those sensations. This allows me to stay in the present moment, develop concentration, and change my relationship with my pain. I’ve written a lot about it in previous blog posts.

Guided meditation involves, well, following a guide’s mental imagery. This could include a mental journey to a sacred or safe space, visualizing something that you want to happen, a guide to letting go of anger, and much more. I can’t speak to it as much, because most of my experience with guided meditation has been at the end of a yoga class.

Each of the healthjourneys meditations focus on a particular issue, including relaxation, sleep, PTSD, and even fibromyalgia. I bought the mp3 of the fibromyalgia CD, and I’ve been listening to it at night. One of the things mentioned in the CD is that it works even if you’re sleeping, because your unconscious brain will absorb what is said. I’m not sure how much scientific research has gone into that claim, but I will say that I’ve slept better than I have in years.

My favorite imagery on the fibromyalgia meditation involves listening to your body like it’s an old friend, as it’s your oldest companion. Belleruth takes you through a body scan. There’s also a lot of focus on the breath, and on breathing out negativity and taking in healing. It’s a really nice CD, and listening to it has definitely helped me fall asleep.

Meditation CDs are somewhat idiosyncratic, as what one person finds soothing another person may find annoying. Belleruth’s voice is deep, almost husky. At first it kind of made me giggle, but now I’m glad that it’s slow and steady. It makes her voice easier to sleep to. You can listen to an audio sample of the fibromyalgia meditation on this page, underneath where the checkout information is.

Each CD also has a series of affirmations, which you can apparently listen to in the car as well. I like the affirmations, so I mostly just listen to them when I’m sleeping.

Ever tried a guided meditation CDs? Feel free to comment with some of your experiences.

Previously, my schedule goal has been to update Monday-Wednesday-Friday. This has been difficult to maintain lately, because I’ve had a lot of medical appointments and other medical issues in general.

I tend to have fewer appointments on Tuesdays and Thursdays, so I’m going to switch to updating those days. Hopefully it will also be easier to update twice a week rather than three times.

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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February 2020
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