Archive for the ‘Fibro flare’ Category

Okay, keep the noise down.  I know, I haven’t written in a while.  Where have I been, what have I been doing?  Not much that was different from before.  I was just trying to manage my energy.  Sometimes fibromyalgia requires that.  So I have been doing the most urgent things and putting the rest out of sight and out of mind.  But my energy seems to be returning and I hope to be “spouting off” on a more regular basis again.

To begin, let me tell you where I am.  I flew to Florida yesterday to visit a dear friend in Leesburg.  I’ve written about him before though you would not have known it.  But he’s having tough times and needs to be cheered and encouraged.  I flew into the Orlando airport from the airport in Hartford, CT.  This is only the second time I have traveled solo; the prior time was last month when I went to SD for the blessing of my friends’ house on Pine Ridge Reservation.  I will say that was easier, even though I had to cross the entire O’Hare Airport to make my connection.  Both flights were pleasant enough.  The difference is driving.

There are far too many drivers for my liking in Florida — definitely more than in South Dakota.  I’m not a big fan of traffic!  But I made it safely and not too stresses.

The images I’d like to leave you with are the ones that greeted me as I drove from the airport.

The first was the sun.  It was just above the western horizon as I left.  It looked huge, at least three times the side the sun usually appears.  Due to the slight haze in the sky, it appeared as a gigantic orange ball.  However, it did not have the glare that the sun usually has as you drive toward it.  So you could actually look at it and appreciate the beauty.  I wished my camera was not packed.  The sky was amazing shades of blue and what we, as children, had called “sky blue pink” for lack of more accurate color names.  Perhaps you know the colors I mean.

As the sun was dipping in the western sky, the full moon was rising in the eastern sky.  It, too, looked immense.  It seemed to fill the sky.  It was simply beautiful and very bright.

I am a big nature fan and it almost felt as if these beauties were God’s gift to me for daring to take this trip and travel alone again.  I knew I was grateful for the gift.

I think it is so important to accept the gifts we are given, especially when we aren’t expecting them.  When ;you are a giver, it is important to remember how to receive.  It helps you understand the other person, the recipient of your own gifts.

Time to run.  But I promise there will be more to read now.  I’ve missed writing.  That too is a gift.


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I am up to my eyeballs in packing, planning and preparing for our trip to Pine Ridge Reservation.  We leave Friday, June 2.

Last night, because I was starting to get a bit dizzy with all of this floating around in my head, I decided to make a list of the things I still needed to do.  While it might ultimately be useful, it is also rather overwhelming to have it all in black and white in front of me.

There is too much to do and too little time to do it in.

I have to pack the usual vacation items – clothing and the like.  I have to make sure I have all the necessary medications.  I could probably do that part of the packing in my sleep at this point in my life.

I have to make sure I have the electronics I need to take with me this time organized:  my new camcorder (which I also need to learn how to operate), my voice recorder, my netbook computer, the still camera, my phone, battery charger, cords . . . I’m sure I’ve forgotten something!

I have to make calls to persons on the rez to let them know when I will be around and hope that they will be available on those days.  Of course, there are so many people I would like to see in addition to our friends that I have to pare down the list a bit.  Since two days are travel days and the first four days of the visit will be used taking our friends to Salt Lake City to see my “goddaughter” then returning to the rez (about a 12 hour drive each way!), that leaves only four days to do everything else.

Everything else is a pretty vague term, don’t you think?  I hope so, because it’s meant to encompass a wide variety of activities.  There is a free concert by the youth involved in the Independence through Music project that we hope to attend.  The Veterans Powwow is happening in Pine Ridge on those days.  I have some people I want to visit to learn more about the kinds of assistance available to those who live on the rez.  There are more people I have “met” by phone when assigning sponsors to them that I would now like to meet personally – actually a lot more than I will likely have time to meet.

That’s not all.  My parish took a collection when they heard we were taking this trip so that we could use the cash to purchase art and crafts from local artists.  The plan is to put the cash into the economy on the rez now, then bring back the items and put them up for auction.  The proceeds will then go back into a fund to keep repeating the process — income rather than handouts.  So I have those items for which I need to contact folks.

I hope to be in touch with KILI, the Voice of the Lakota Nation — the independent radio station on the rez.  I’d like to visit the market so I can do actual price comparisons, not just say things are “much more expensive” when purchased on the reservation.  I’d like to locate some of the neighborhoods in the areas I serve that I’ve only heard of, never been to visit.

I also need to get out all the things we’re taking to our friends (clothing, toys for the grandchildren, etc) so they can be packed.

I have to figure out how we will keep all of our equipment secure when we are there.  I need to find out where I can buy some white sage before we leave (not holding my breath there).

If there was nothing else to be done, it might work.  But you know that’s never the case, don’t you?  (If things always get done easily and you are one of those talented multi-taskers, don’t talk to me right now!)

I just talked to a sponsor for about half an hour.  I really enjoyed the conversation, but . . .

I talked to a grandmother on the rez who needs sponsors for two grandchildren a little bit earlier.  I really enjoyed the conversation, but . . .

Time to get down to brass tacks here.  How many people did I call that were on my list?  Zero.

How many items have I crossed off my to do list?  4  How many items were on the list when I started?  24

At this rate, I’m going to be up the proverbial creek without a canoe by the time I have to leave for the airport.

My “to do” list is really a “too much to do” list!!

“Breathe!  Slowly!  Relax . . . . . .  you’re just getting over a respiratory infection . . . you don’t want the fibromyalgia to flare up, do you?”

Okay . . .

So I may not do much writing this week, but I hope you will forgive me.  I promise I will bring home stories, photos and video to share if you will be patient.  Deal?

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Okay, I’ve been coping with fibromyalgia for at least 45 of my 58+ years.  I’ve seen, or perhaps I should say felt, many types of flare-ups caused by something I thought was innocuous.  This time I didn’t do anything, unusual or not, that would set up this strange flare.

Yesterday, I got up and dressed as usual.  I had a cup of coffee and checked my email as usual.  I sat in front of the computer trying to think of something to write about, as usual.  Nothing came to me, so I washed the dishes and puttered around the house a bit.

I got a phone call about noon from my Lakota friend’s daughter, the mother of the 2 little boys we now “sponsor.”  We talked about the younger son’s upcoming birthday and the older boy’s graduation from Head Start.  We talked about raising children.  She needed some gas money and $2 for a “tin plate” (aluminum pan because food stamps wouldn’t cover that) for potato salad for the party.  I told her I would call the local store and arrange for that.  After our conversation, I called the store and set things up for her.

I decided to play a bit of Bejeweled Blitz on Facebook while I waited for my husband to come home for lunch.

That’s when “it” happened.

I suddenly felt totally dizzy.  It didn’t matter whether I was sitting or standing, eyes open or eyes closed.  Dizzy.  The room would spin when I turned my head.  Heaven help me if I tried to walk.

At first I was quite startled by this turn of events.  Was I hungry?  I hadn’t eaten, but that was typical.  Besides, this didn’t feel like low blood sugar – been there, done that.  What else would cause this dizziness, this vertigo?

I tried to stay still and centered.  I noticed that my right shoulder was starting to tighten up.  Then the right side of my neck started to tighten as well.  That’s when I realized it was my fibromyalgia.  Last year I had some trouble with vertigo and loud ringing in my right ear.  The episodes of vertigo were much shorter than this was, but they felt similar.  Last year I had undergone all kinds of tests — an MRI that proved nothing more than the fact that I did, indeed, have a brain inside my skull (the issue had been debated); hearing and inner ear tests (which caused a couple of days of motion sickness); heart tests (yep, I definitely had one).  The verdict of all those tests – there was no cause found for my problems.

I had eventually realized last year that it was the fibromyalgia that was causing all that nonsense – the muscles in my right side (back, neck, scalp) had been quite tight and were obviously irritating some nerve that caused all the problems.  One visit to a massage therapist had taken care of them all.

But that time I had done some work that had set off the muscle spasms.  I had expected some problems, though certainly not the secondary ones I had experienced.

Could this be the same thing?  Was this dizziness due to fibromyalgia?  My instinct told me it was.  Strange that there had been nothing to set off the muscles, but other than that it was very similar.  So what could I do to try to stop this problem before it got even worse?  I could already feel the muscle tightness spreading to the rest of my back and chest.

I called the seminar leader of my class that night to let her know I would not be in class.  I took off my bra because the strap felt so tight on my shoulder.  Then I told a Flexeril (a muscle relaxant).  I knew that, since I hadn’t eaten much – just a bowl of cereal when my husband was home at lunch, the drug would probably hit pretty fast and relax the muscles.  At least I hoped so.  I sat in the most comfortable chair in the house and did some relaxation and meditation while the medication went to work.

And work, it did!  As I sat and relaxed, I could actually feel the muscles in my back and chest reverse course.  Within an hour the muscles were relaxed and the dizziness was gone.  Really.  I made stir-fry for dinner.  No problem.  Later in the evening, I felt the muscles beginning to tighten again and took another Flexeril.  The muscles relaxed.  Needless to say I went to bed early and slept well – a side effect of the medication.

Today, I realized what had set off this flare up – my bra.  I saw that.  You just rolled your eyes!  But really, that is what it was.  The pressure of the bra strap on my shoulder and bra back on the right side of my body irritated the muscles enough to set off the chain reaction.

Today, I seem to be on an even keel again.  No dizziness, no pain in my back or neck so far.  And no bra today (TMI?) to set things off.  It’s good to “work at home.”

After 45 years, I have learned yet another fibromyalgia trigger and figured out ways to cope with it.  Didn’t even need an MRI this time!

I guess this “old dog” still can learn new things.

If you are coping with fibromyalgia, take it from someone who’s probably been where you are – it isn’t terminal and you can keep learning how to cope with it.  Most of all, trust your gut.

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