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Archive for the ‘Fibromyalgia’ 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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And when I say short, you know I mean short!

Ever since the 20/20 Program aired last Friday night, I have been swamped with work.  In the 48 hours after the show, I received more sponsors from my coordinator than I typically receive in a month!  It is an example of “Be careful what you ask for, you just might get it.”  It is a wonderful problem to have but with my fibromyalgia I have to be careful.  If I let myself get stressed by all the work, I’ll have a flare-up and then I definitely won’t be able to get the work done.  I am trying to balance it out but it isn’t easy because I care so much about the work I do.

I knew, when this program was first discussed over a year ago, that it would bring about the kind of interest that it has generated.  I knew that, if someone with a large enough following would bring the conditions to the public so they could SEE for themselves what it was like, the people in this country would respond.  I tried the networks and Oprah and everyone I could think of to DO SOMETHING.  Gratefully, ABC News came through.  Why, I even wrote an open letter to Bill Gates on this blog.

So now I am working night and day to contact sponsors.  Then I have to contact people on the reservation.  Actually, that can be the hard part.  Phone numbers on the reservation change more often than the weather — or so it sometimes seems.

Also, as I begin to assign more sponsors, people on the rez are telling me about neighbors who could use one.  Perhaps one day we will have all of the people on Pine Ridge matched with a sponsor.

If you don’t see a new post for a few days, do not think I have abandoned my crusade or forgotten to write.  I’m just up to my eyeballs in sponsors at the moment!

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Before I got into my concert review, let me preface this post by admonishing you that you should not, if at all possible, buy concert tickets months ahead and then plan to fly across country unexpectedly at 6 AM the next morning.  I say this from experience because that is exactly what I am doing.  In fact, I’m writing this in O’Hare Airport in Chicago as I try to stay awake between legs of my flight from Hartford, CT to Rapid City, SD.  But more on the trip another time.  Suffice it to say that, if you are 59 years old, it isn’t as easy to stay up over 24 hours as you recall from your youth.

Now – to the concert.  It was good.  Not great, but good.  Actually, 2 of the 3 bands were great and the one that wasn’t might surprise you.

Night Ranger opened the night.  I had not heard of them before (I’ve led a sheltered life, I guess – kidding!) but I am open-minded when it comes to music.  They were actually quite good, with plenty of energy and enough personality to warm up the late arriving crowd.  I particularly enjoyed a song titled “When You Close Your Eyes.”  Their set was not long, as you would expect for an opening act and perhaps deserved to be longer.

Foreigner, a favorite of my husband’s, performed next.  They were fabulous.  Yes, I had heard of them.  Yes, I like their music.  But they were even better in live performance, in my humble and musically uneducated opinion.  The energy they had was nothing short of phenomenal.  They hit every cue.  They truly entertained as well as singing their hearts out!  I would definitely go to see them again.

I had seen Journey in concert last year, when they were touring with Heart.  It had been a fabulous concert.  I would rank it in the top concerts I’ve been to.  Arnel Pineda was astounding in that concert – sounding so much like Steven Perry that you had to pay attention to remember that it was not Perry singing.  So of course I had high expectations for Journey last night.

Journey was a disappointment this time.  For all the running and jumping around that Arnel Pineda did, Journey lacked energy musically.  The songs they chose for their program were unfortunate.  They decided to include several new selections, which would have perhaps been okay had they not put them all consecutively.  The audience did not recognize them.  You could feel the energy that had been building in the audience dissipate like a rapidly deflating balloon,

The biggest disappointment was Arnel Pineda himself.  He was as bad last night as he had been great in the previous concert I saw.  He seemed to forget words, seemed to be singing at a different tempo than the rest of the band and seemed more interested in making contact with the ladies in the audience than in the music.  I mused about the possible reasons as they performed.  Fatigue?  But the rest of the band had been on the same tour.  Illness?  Possible.  I hoped so – because the third thing that came to mind, based on how he looked when they did close-ups of him on the video screens was that he was high on something that was not enhancing his performance.  Whatever the cause, the result was really bad music.

There were actually a couple of things that made an impression on me that were not related to the music.  One was the venue.  The concert took place at the Comcast Center in Mansfield, MA.  I had been there twice before, but not for quite some time.  It is an outdoor venue with a covered pavilion, additional uncovered seating and lawn seating, all in an amphitheater style.  I found that it was quite a climb uphill before heading back down to our seats in the covered area.  The seats were not very comfortable, which may be a good part of the reason many fans, who had paid for “seats,” chose to stand for almost the entire concert.  I had to switch seats with my husband after a short time because the man who was seated on the other side of me (with my fibromyalgia I cannot stand) was having a great time standing and dancing.  I, on the other hand, was not enjoying his butt in my face as he invaded my “seat space” with his dance.  I don’t begrudge anyone the right to dance and have fun at a concert, but I really didn’t enjoy his act.  There was a couple in the row in front of us who typified those who have no respect for others.  They stood for the entire show.  When people behind them asked them to sit, this couple told them they should stand too, if they wanted to see.  The fact is that many people like me have “invisible disabilities” that prevent them from doing that.  Exuberance is one thing.  Rudeness and disrespect is quite another.

There was some kind of fire that caused a foul odor and smoke.  No one was evacuated and I have no idea what was burning.  I do know that it was putrid.  The upper level rest rooms were abysmal.  The toilets would not flush due to weak water pressure.  After a while I’m sure they weren’t flushing for other reasons.  I didn’t go back to those rest rooms.  The lower level did not seem to have the same issue.

You may think me strange for saying this, but the thing that impressed me most through the night had nothing to do with musicians, fans or venue.  What impressed me most was the stage crew.

The sets for Night Ranger and Foreigner were different and required some changes but the changes were small – rearrange the stairs and instruments.  However, the set used by Journey was entirely different.  The crew removed every bit of the first set, right down to the mats on the stage, then replaced it with the video screens, signage and instruments that Journey required (I wished their music had been as well done as their set).  That doesn’t sound like a big deal for guys (and one gal) who do this for a living, I guess.  But the fact that it was all done in 15 minutes was amazing!!  That was it – 15 minutes and Journey could take the stage.  I wondered why the Commonwealth of Massachusetts cannot find road construction crews who work that quickly and that well!!

By the time we got home from the concert it was 12:30 AM today.  If I had gone to sleep, I’d have had to get up at 3 AM to get ready to leave for the airport.  I’d never have done it.  So I stayed up, finished packing and hoped to get some sleep on the planes.  Since I’m finishing this on the second leg of my trip to SD, you can see that “sleep on the plane” thing didn’t work.

I ought to sleep really well tonight!!  I think the concert was worth it . . . I think.

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Our last visit to Pine Ridge Reservation was very different from our previous visits.  One of the things we did this time was to spend a bit more time learning about the contemporary activities on the rez.  History is important but what’s happening today helps me to understand the youth needs better.

So with some trepidation, we decided to attend the Independence Through Music (ITM) free concert that was being held one of the days we were there.  I say with some trepidation because I have written about the ITM project before and knew that many of the musicians were hip hop or rap musicians.  No offense to anyone whose musical tastes run in those directions, but mine do not.  I can enjoy almost anything else, being the eclectic gal that I am, but rap generally would send me heading for the door.

In addition to being eclectic, however, I am also open-minded and like to learn about new people and things.  So we went.  I have a feeling that my husband, who shares my hip hop/rap feelings, was there only because I wanted to be.  I’m grateful, because he handled the video taping which allowed me to concentrate on listening, watching and, yes, enjoying the concert.

We arrived at Billy Mills Hall in Pine Ridge, the concert venue, a bit early.  I had a fairly good idea of what to expect, my husband did not.  What we found was basically a large gymnasium with bleachers that push back when not in use.  If you’re old enough, you may have had that kind of gym for your high school.  Obviously, the acoustics were going to leave a lot to be desired.

We watched the sound check, which included some of the artists we would see later.  Interesting.  There is a link to the sound check video clip below.  This is the memory of the concert, followed by some observations.

******

There was one more thing that struck me about the concert in general — and it had nothing to do with the musicians.  Picture this:

You are sitting on the bottom step of the bleachers in a large, open gymnasium.  People are getting their hands marked with a number as they enter — not for a count, but so they will be eligible for door prizes at intervals during the concert.  Your back is already telling you that your fibromyalgia is not going to be happy with the seating arrangements.  You ignore your back, knowing you may pay for that tomorrow.

The lighting leaves a little to be desired.  There are no spotlights or stage lights, of course; there are just the single bulb lights suspended from the gym ceiling.  Just the lights in front, where the performers are, are lit although at first the sunlight is also streaming through the high gym windows.

People trickle in.  You are surprised that there are not more people, since the concert is free.  But of course, communication on the rez is not great so it’s possible that many don’t even know about the concert.

You notice that while some people sit and watch the concert from one spot, others seem to need to wander about.  Some go in and out the doors – the smokers, of course.  Children run about freely, a bit distracting for you but they are not ill-mannered or wild.  You think how wonderfully accepting the community is of normal child behavior and how much love they demonstrate to their children.  Even the performers accept it easily, including the guy who performs half his act holding his son who is sleepy and wants his dad.

You notice a young man who is very obviously disabled and by his physical appearance, you would guess he has Fetal Alcohol Syndrome.  He wanders across the gym, mingles with the musicians and dances when the mood strikes him.  Then surprisingly he is introduced as a community member who would like to perform.  He goes to the microphone, stands there clearly struggling to recall the song and to have the courage to sing it.  He cannot.  Suddenly, the audience breaks into loud applause and he beams.  He leaves the microphone and resumes his previous activities.  But it isn’t the young man who has impressed you — it is the community.  The support and love they showed this disabled young man spoke volumes about the kind of people they were.  Amazing!

The concert was supposed to run 6 – 10 pm.  It is now 9 pm.  You want to stay for the last hour, but you can see your husband has run out of enthusiasm.  More than that, which might be overlooked, your back has finally begun to issue you an ultimatum — move and do something else soon or you will pay a BIG price.  You know your back doesn’t kid about those things, so you look at your husband and give him a slight nod.  He packs up the camcorder and you both head out to the car.  You have almost an hour’s drive through the road construction to go the distance to your hotel at the casino.  Suddenly you are very tired and hope you can stay awake until you get to the room.

******

The show started more or less on time.  It was interesting to watch these aspiring musicians perform.  Some had performed locally before.  For others, this was the first time they were performing in front of a live audience.  It showed, to be sure, but it also a bit endearing to watch these young men who were performing for the first time confront their fears and insecurities.  I say young men, because there is only one young woman in the program so far.  That’s just a result of who showed interest, not where the talent lies.

I was struck by the fact that most of the hip hop/rap artists performed music which told a great deal about rez life from the perspective of young people.  So it was very interesting.  It gave another point of view to an already complex topic.  It was not all negative.  Many of the lyrics displayed their pride in their heritage and their anger at being judged.

There are links below to all of the performances.  If you notice that there is a clip missing (#10), that clip is of Davidica.  Since she is a professional and has recorded the song that she sang, I agreed not to publish it at this time.

I wanted to make note of the young lady who performed, Tiana Spotted Thunder.  I had noticed her videos on YouTube before my rez visit and before I knew she was a participant in ITM.  In person, even battling a cold, she sounds just as beautiful as she looks.  But she is shy and it unfortunately comes off as not believing in her own talent.  I hope she can overcome that because her talent is real and her voice will have power when her confidence can shine through it.

My bottom line on the concert?  I loved it!!!

And I learned something, which is always good.

I learned that, just as you shouldn’t judge people by any arbitrary factor (and I usually don’t), you shouldn’t judge art or music by arbitrary factors as well.  I typically don’t like the kind of music I heard that night.  But I did enjoy it at the concert.  Why?  It wasn’t exactly the same.  Perhaps it was the roughness, the unpolished, unpackaged manner in which it was performed.  I don’t know for sure.  But I am glad I was open-minded enough to try it.

******

Concert Sound Check                                 http://youtu.be/OLSRBKVXK3Q

Independence Through Music #1            http://youtu.be/J1q0rI01bfI

Independence Through Music #2            http://youtu.be/RQ0pWiG6qPE

Independence Through Music #3            http://youtu.be/HgyyXxQaT-w

Independence Through Music #4            http://youtu.be/lbEktnOGyvI

Independence Through Music #5            http://youtu.be/eqdRqCd9TDI

Independence Through Music #6            http://youtu.be/NFitcxqa3Fw

Independence Through Music #7            http://youtu.be/GlJ9fPdSJNY

Independence Through Music #8            http://youtu.be/Ins1pL2fkLY

Independence Through Music #9            http://youtu.be/OPxVGZTggso

Independence Through Music #11          http://youtu.be/etgyr74Gewk

 

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OK, I know I haven’t ranted in a bit, but it’s getting out of hand.

The current price of fresh green beans is averaging about $1.29, depending on where you live and what kind of market you shop in.  (Add about 20% if you live on Pine Ridge Reservation.)

I am writing about green beans because I wrote about them 3 years ago (have I been doing this that long?) and that post has more hits than any other single post I have written.  When I wrote, the price of green beans where I live was hovering around $3.49 due to bad weather in the areas where we typically grow them in this country.  To have them more than $2 over the price I recalled had been a shock.  But prices are not doing that now and still I am getting hits on that post!  People, the price of green beans (noted above) is where it should be right now.  It will go down a bit in a month or so as green beans become more plentiful in additional local areas.

You might ask why I am so annoyed about that post receiving more hits than anything else – and even if you don’t ask, I’m going to tell you because it’s MY soapbox.

I have written about many more important topics over the years than the price of fresh green beans.

I have written about the Third World conditions that exist in the USA on the Pine Ridge Reservation.

I have written about Independence Through Music, a wonderful program for youth on the Pine Ridge Reservation.

I’ve written about living and coping with fibromyalgia for 45 years and raising a son (now 29 years old) who has Asperger’s Syndrome.

I’ve written about crime, death, dying, family, health, housing, nature, travel, national news media, passion, depression, rape, values and laundry to name just a “few” more topics.

But what comes up most often?  The price of green beans.  I’m not sure why that cannot be checked when one does the marketing.  Is it that important to know before you get there?  Or are folks in this country getting that lazy that they have to let their fingers do their shopping before they even get to the market?  There can’t be that many kids getting the assignment to find out about the prices of produce – especially in the summer.

OK, I’ve just heaved a huge sigh.

Whatever got you to this post in the first place, I hope you’ll take the time to look up one other category before you leave.  My personal suggestion would be Pine Ridge Reservation because that way you’ll learn something really important and you’ll have a large selection of posts through which to learn it.

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Actually, I guess it ought to be three wheelchairs, since I now know three women on Pine Ridge Reservation who require wheelchairs to move around.  There are many more but I am not personally acquainted with them.  But I know two different “types” of wheelchair-bound women.

Wheelchair 1

When we returned home from our trip to the reservation earlier this month, I had a phone message waiting for me from one of the women to whom I refer.  When I had spoken with her a month or so earlier than the trip, all was well — and she did not have to rely on a wheelchair to get around at that time.

This woman is a grandmother who cares for a teenaged granddaughter (who has a serious chronic illness) and a grandson.  She lives in a home with her spouse, an adult daughter, several other grandchildren and an adult son.  But she is definitely “in charge.”  She is the glue that holds the family together, as one of the children’s sponsors told me.

I returned her call and asked how she was.  “Pretty good now that I’m home from the hospital,” was her reply.

The hospital?  She had been unexpectedly hospitalized because of gangrene in her foot, a complication of her diabetes.  It has just been a toe that looked “a little dark” when she went to the doctor.  But it was more than that, apparently.  They brought a helicopter in to fly her to Rapid City Regional Hospital, where she spent the next two weeks.  During that time she had a leg amputated and got her wheelchair.

When she was leaving the hospital, they gave her a narrower wheelchair which she tells me fits through the doorways in her home.  Since she already had significant arthritis, they had already added a ramp to her home in the years before.  If she needed any further accommodations made to help her mobility, I had no doubt that this feisty Lakota grandmother would ask for them.

We spoke about the adjustment from two legs to the chair.  She told me that she is not “happy” about the change, that it can be frustrating at times but that she would manage.  She laughed when she told me about the groups that have been calling her with “support” for the depression she must have.  She told them she wasn’t depressed, but that she would contact them if she needed them.  She won’t, I’m sure.  She’ll “manage.”

The real reason for her call?  Not her own woes — at least, not directly.  She had heard from her long time sponsor who had told her she would only be able to sponsor her until the fall.  The sponsor, who had major heart surgery just a couple of years ago, was now fighting a battle with cancer.  She was worried about her.  Oh yes, and could I start looking for a new sponsor for her so she would have one when this sponsor stopped in the fall?

I wonder if need always trumps concern.  Probably.

The second woman is also a grandmother and diabetes was also the cause of her need for the wheelchair.  The first time I spoke to her she told me that she liked to sew and read.

We visited her on one of our early visits to the rez.  At that time she was living in an old FEMA trailer.  There was no room to get around in the wheelchair, with the worn, overstuffed furniture she had in the trailer.  There were no closets to speak of, so clothing and other items were stacked and strewn throughout the trailer.  She had adult nephews who were there at the time but did not seem the least interested in helping her get around in the cramped space with the wheelchair.

Now she lives in slightly better “digs” for a rather sad reason.  Her adult daughter, who has four children, was sent to jail.  I don’t know the reason and I did not pry.  The children needed someone to care for them while mom is away.  So this grandmother moved into her daughter’s small house to care for the young grandchildren.  It is now a bit easier for her to get around.  But she is not the type to ask for anything for herself and so she is not likely to have a truly accessible home.

Wheelchair 2

The third woman in the wheelchair is very different from the two grandmothers.  She is younger.  She is not in her wheelchair due to complications of diabetes.

It was about 15 years ago that this woman was in a car that was rear ended by a drunk driver.  I’ve written about her before.  She was paralyzed from the waist down and has been in her wheelchair ever since.  We first met her in her apartment, which is incredibly small.  The kitchen fits a small kitchen table and her chair with little room to walk around it.

The last time I spoke to her, she related that she has never been able to use her bathroom.  She cannot get into it with the wheelchair.  She must do all her bathing and toileting in her bedroom.  Of course, the bedroom is not much larger than her mattress, so it is difficult.

It saddened me to think of living like that.

It is very difficult to be handicapped on the reservation.  Most of the living accommodations would not “pass” ADA muster.  There are many unpaved surfaces.

Yet there are many handicapped persons on the reservation, diabetes probably being chief among the causes.  How do I know this?  One of the things I noticed on my last visit was how many homes have ramps to the front doors.  I guess it’s good that the handicapped person can enter his or her home, even if they can’t get around in it very easily.

I have yet to see anyone with an electric wheelchair, though I am certain there are some who would benefit from that convenience.  Especially someone like the last woman I wrote about, who has had to be in the chair for so long already.

I was in a wheelchair once, for six weeks.  I am unable to use crutches due to my fibromyalgia and I broke an ankle that required surgery.  I had to use a wheelchair.  Even in my 5 room ranch it was not easy getting through doors.  It was not easy getting in and out of buildings.  The toughest task was getting up a ramp in an arena when I attended a hockey game one time.  Obviously my husband wasn’t going to push me into the Ladies’ Room.  So I was trying to push myself up the ramp which was steep enough to make me struggle.  Thank goodness it was “Girl Scout Night” and a few scouts came along to assist!  They truly did a good deed!!

So who does good deeds for the folks on the rez?

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I would guess that some of you are wondering what kind of high I’m talking about. So let me assure you right now that this high is NOT from smoking anything. In fact, in the “goody-goody” world I have inhabited for over 58 years that is one experience I have never had. Some tell me that is my loss; others tell me I should be proud of that. The fact is that it was never an issue – it was never something that interested me much.

It’s probably a good thing I never smoked weed or anything else. Otherwise I might be having an even more difficult time today.

I guess I’m probably feeling high because I’ve let myself get so unconditioned aerobically in the past year. It’s been one thing after another – or perhaps I should be honest and say one excuse after another – that has kept me off the treadmill all this time.

We got back to the Denver area after a week in South Dakota just last night. I know from previous experience that it takes my body several days to adjust to high altitudes so it doesn’t totally surprise me that I am feeling it. But the degree does surprise me.

Yesterday afternoon, when we arrived at our hotel, I had to lie down for a while after walking in from the car.

Today ws returned the rental car at the airport. We took the luggage out and I rolled the 2 small bags to the shuttle bus. By the time we reached the bus stop (a VERY short walk) I was so short of breath, I probably sounded like a dog after a long run in 90 degree heat.

By the time the bus reached the terminal, I thought I was okay. It was a delusion! I got off the bus and walked the 20 steps to curbside check-in. I was winded again! By the time I walked through the labyrinth of taped lanes to reach the TSA agent who was checking boarding passes and ID’s, my chest was aching and I was light-headed.

I must have looked a bit off because he asked if I was okay. I told him briefly about my challenge with altitude. He asked if I needed a wheelchair.

Dilemma! Do I admit my shortcoming and swallow my rather miniscule pride? Do I allow someone to push me through the airport to the gate? Or do I tough it out and drag through the airport, gasping with every step and worrying my husband?

I have dealt with fibromyalgia for 45 years. I have learned when to push myself and when to wave the white flag. I surrendered and here I sit at my gate. My attentive husband got me something to eat and I’ve been writing this on my phone – a serious challenge itself.

I love the mountains! We are returning to Yellowstone National Park in September.

I guess that means I’m getting on the treadmill Monday!

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