Facing Fibromyalgia

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0><script type="text/javascript" src="http://hb.lycos.com/hb.js"></script> <script type="text/javascript" src="http://ratings.lycos.com/ratings/lycosRating.js.php"></script> <script type="text/javascript"><![CDATA[//><!]]></script> <script type="text/javascript" src="http://scripts.lycos.com/catman/init.js"></script> <script type="text/javascript" src="http://members.tripod.com/adm/ad/code-start.js"></script> <script type="text/javascript" src="http://members.tripod.com/adm/ad/code-middle.js"></script> <script type="text/javascript" src="http://members.tripod.com/adm/ad/code-end.js"></script> <noscript> <img src="http://members.tripod.com/adm/img/common/ot_noscript.gif?rand=497765" alt="" width="1" height="1" />  <iframe frameborder="0" marginwidth="0" marginheight="0" scrolling="no" width="728" height="90" src="http://ad.yieldmanager.com/st?ad_type=iframe&ad_size=728x90&section=209094"></iframe>  </noscript> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=200 BGCOLOR="#003333" TEXT="#F7F7FF" background="041d4c00dduajq.gif"> <div> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="0" WIDTH="95" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" ALIGN="BOTTOM" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 46 WIDTH="91"><IMG BORDER="0" SRC="1x1.gif" HEIGHT="46" ALIGN="bottom" WIDTH="91" HSPACE="0" VSPACE="0"></tD> </tR> </TABLE></div> <bR> <div> Copyright</div> <div> Susan L. Holm</div> <div> 2003 - 2005</div> </td> <td valign="top" BGCOLOR="#FFFFFF" TEXT="#080000"> <div> <FONT SIZE="5" COLOR="#003333" FACE="Arial" ><B>Galens World</b></FONT>     |     <A HREF="index.htm" TARGET="_top" TITLE="Galens World"><U>home</U></A></div> <div> <A HREF="id17.htm" TARGET="_top" TITLE="About Galen"><U>About Galen</U></A>   |   <A HREF="id18.htm" TARGET="_top" TITLE="Contacting Me"><U>Contacting Me</U></A>   |   <A HREF="id19.htm" TARGET="_top" TITLE="Readings, Classes, Scheduling Informatio"><U>Readings, Classes, Scheduling Information</U></A>   |   <A HREF="id36.htm" TARGET="_top" TITLE="THE BOOK SHOPPE And Links To Other Site"><U>THE BOOK SHOPPE  And Links To Other Sites</U></A>   |   <B>Facing Fibromyalgia </b>   |   <A HREF="id23.htm" TARGET="_top" TITLE="Honor"><U>Honor</U></A>   |   <A HREF="id27.htm" TARGET="_top" TITLE="Spiritual Workout"><U>Spiritual Workout</U></A>   |   <A HREF="id30.htm" TARGET="_top" TITLE="Balancing Act"><U>Balancing Act</U></A>   |   <A HREF="id21.htm" TARGET="_top" TITLE="Risk....."><U>Risk.....</U></A>   |   <A HREF="id35.htm" TARGET="_top" TITLE="Workbook..."><U>Workbook...</U></A>   |   <A HREF="id29.htm" TARGET="_top" TITLE="Road To Happiness"><U>Road To Happiness</U></A>   |   <A HREF="id32.htm" TARGET="_top" TITLE="Yeah.... but......"><U>Yeah.... but......</U></A>   |   <A HREF="id50.htm" TARGET="_top" TITLE="Whats CHANGE Got To Do With It?"><U>What's CHANGE Got To Do With It?</U></A>   |   <A HREF="id33.htm" TARGET="_top" TITLE="Whats RIGHT With The New Age?"><U>What's RIGHT With The "New Age"?</U></A>   |   <A HREF="id31.htm" TARGET="_top" TITLE="Whats Wrong With The New Age?"><U>What's Wrong With The "New Age"?</U></A>   |   <A HREF="id34.htm" TARGET="_top" TITLE="PSYCHICS do I need to hire one?"><U>PSYCHICS do I need to hire one?</U></A>   |   <A HREF="id51.htm" TARGET="_top" TITLE="The Great Ego Debate"><U>The Great Ego Debate</U></A>   |   <A HREF="id26.htm" TARGET="_top" TITLE="_"><U>--Type Title Here--</U></A>   |   <A HREF="id25.htm" TARGET="_top" TITLE="Guest Book"><U>Guest Book</U></A>   |   <A HREF="id28.htm" TARGET="_top" TITLE="Message Board Forum"><U>Message Board Forum</U></A>   |   <A HREF="id22.htm" TARGET="_top" TITLE="England Journey"><U>England Journey</U></A>   |   <A HREF="id37.htm" TARGET="_top" TITLE="Basics In Astrology"><U>Basics In Astrology</U></A>   |   <A HREF="id53.htm" TARGET="_top" TITLE="Why War, Daddy?"><U>Why War, Daddy?</U></A>   |   <A HREF="id54.htm" TARGET="_top" TITLE="Political Links: "><U>Political Links: </U></A></div> <div> Facing Fibromyalgia </div> <div> It's been over a year since I've had the energy to post anything new to my web site...  and this will be short for now, though I hope to be able to add to it more.</div> <bR> <div> Fibromyalgia is many things; it's changed every aspect of my life, taken and given from and to me. It's both a nightmare and a blessing; it's got more sides than one could imagine; one part of it is about sleep disorder.  Imagine never quite managing to get to sleep, all of a sudden; have that compounded by the rare times you do fall asleep, being awakened just before you reach that place of true, restful, restorative sleep.  Visualize what it's like to cherish 2 hours of uninterrupted sleep, thinking that, at least 2 hours is better than none at all.</div> <bR> <div> In the middle of the night, there is a difference in the sounds of living. In the middle of pain, there is a difference in the experience of being in body.  In the seeking of answers to questions without words, I have found more questions than answers; and I've had to learn to embrace a very different "NOW" than I ever thought possible.  </div> <bR> <div> When I was in the hospital last year (January 2, 2002 thru January 11th), I experienced a "retro peritoneal bleed", following a chemical stress test.  For days, I was in pain before they figured out that I was bleeding internally, and they gave me tranfusions and told me that I might not "make it".  During the first night of being in between.... not as classic a NDE as I'd experience in January of 1996, but pretty darn close, I communicated with many of the Spirit Guide folk.  They told me that this time, unlike last time, I was being given the choice about coming back fully and living, or leaving this body and crossing over; we had long discussions about what it would mean to come back into my body fully; and one thing that was stressed, and which I repeated to many after I decided that I wasn't done living yet.... was that this time, they couldn't "guarantee" that I wouldn't be in severe pain; </div> <bR> <div> at the TIME...... I thought that I knew what pain was, and that I could handle it.  I hadn't fully experienced Fibromyalgia then, just the early symptoms; if I had known that the pain would at times be so all encompassing, I don't know for sure that I wouldn't have just softly left this life; I admit, I have had to raise the roof on what I thought was "unbearable pain" before.  THAT... giving birth, kidney stone attacks, surgery, heart attacks... that wasn't pain, that was PRE-PAIN; compared to what a Fibromyalgia flare can feel like.  </div> <bR> <div> As a heart patient, I'd learned years ago to rate pain on a scale of 1 to 10, 1 being no pain, and 10 being the greatest pain I've ever felt.  With FM, I've had to learn to gauge pain with a much more minute scale.  (rather than ounces, I've learn to measure "metric".... there's a math teacher in my past that surely must be celebrating now).  So far, I've refused to experience a "10".  However, now that I consider childbirth about a "3"...... you can imagine what a 10 must be.....  I have had many a 9 tho.  And those 9 days or nights are BIGGER THAN I AM.  </div> <bR> <div> That's one of the lessons, perhaps, blessings, of Fibromylgia; to learn just how small I truly am.</div> <bR> <div> During a FLARE... there is no hope, no peace, no comfort, there is only pain.  And to stay whole, the only way I've found to deal with it, is to become "one with the pain".  It can't be fought; it can't be dealt with either.  It can only be experienced.  Last flare was Dec 27th, bigger than life, and as close to a "10" as I would let it be.  This time, the doctor gave me a steroid injection and a weeks worth of prednesone. That night, I was sicker than I've ever been in this lifetime, but within 2 days, my hands looked like "regular" hands for the first time in nearly a year.  For 3 weeks, I was hanging around a "2", and most days needed only small amounts of medication. It was like a remission, and I'll be grateful for that gift of 3 weeks of near normalcy for the rest of my life.</div> <bR> <div> Now, Knowing Me......... Being a professional astrologer, for example, and also fully aware that everything one experiences is a CHOICE, (thought sometimes it doesn't feel necessarily like OUR choice...) I accept and embrace that this experience has a higher purpose, and that God's Plan doesn't include my "suffering", I believe there is a cure to be found for Fibromyalgia.  I have had to become very very aware of what I eat, for example, as carbs tend to be craved just prior to a flare, and if the craving is satisfied, it's more likely that the flare is going to be big.  I have had to learn to handle stress with a completely different method than before. Sometimes, I literally have to walk away from a situation that brings on stress, since stress is a true enemy to health in a person with Fibromyalgia. I have learned to tell people that I won't hold their stress for them, either.  Because my plate is very full with staying whole these days.</div> <bR> <div> But I have also learned that I am my own best physician; Fibromyalgia is one of those diseases that doesn't have it's own spokesperson.  4% of the population has it, and it's likely that that figure is actually higher, because there is no test that "proves" FM is the cause of ones' pain and sleep disorder.  I was fortunate to have a doctor that wasn't afraid to diagnose it, and who is understanding about pain management being mandatory for living with fibromyalgia.  But it's also one of those diseases where the person living with it "looks normal" and therefore, many people think it's all in your head (referred to as IAIYH syndrome, by folks with FM). Live with pain 24/7........ for months or years at a time, sleeping very little and forgetting how to dream, before anyone says this is "IAIYH".  It's a nightmare from which waking up is only more nightmare.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> BTW: I want to mention this, in case anybody who reads this has FM.  I'd had very preliminary symptoms, probably for years.  The "trigger" MAY have been the stress of the hospitalization/bleeding episode, since FM often makes its appearance after a major trauma. HOWEVER, one factor that I fully think has more strength than any other was that I was given ZOCOR, one of the statin drugs, for lowering cholesterol, coming out of the hospital.  I took it, as directed for 3 months. In the 2nd month, I was experiencing muscle aching and "flu-like symptoms" and as per the warning label, called the pharmacy to see if the ZOCOR could be causing it, as there can be serious damage to the liver and/or muscles with the use of any of the statin medications.  The pharmacist was almost rude and told me I likely had the flu.  2 weeks later, I stopped the meds on my own, and made an appt. to see the doctor, who ran the usual blood tests.  My liver enzymes were elevated but the RA factor was negative, so the doctor thought I could go back on the meds "if I wanted to".  I choose NOT to, because, until my taking the ZOCOR, I'd never experienced the endless pain, swelling and growing levels of discomfort.  IF you are on a statin medication to lower cholesterol, and are having "flu like symptoms", PLEASE go off the medications and get medical advice as soon as possible. I believe there is a definite link in taking a statin drug and my developing full fledged FM.</div> <bR> <div> This poem, below, was written during one of the many lost nights of rest last year; I accidentally found it today, when my granddaughter asked for paper to draw pictures.  It is right to share it today I think....</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> DREAMS</div> <bR> <div> Creative thought</div> <div> fears faced</div> <div> Death tasted</div> <div> Questions answered.</div> <bR> <div> All forgotten,</div> <div> in the blink of an eye.</div> <div> Awakened</div> <div> in the nick of night.</div> <bR> <div> To face life without knowledge</div> <div> Garnered in the peace</div> <div> of </div> <div> Sleep.</div> <bR> <div> written in the middle of the night  8/11/02</div> <div> by Susan Holm</div> <bR> <div> <I>There are NO Atheists in the world of Fibromyalgia</I></div> <bR> <div> If you have health</div> <div> CHERISH IT.</div> <div> If you have sleep</div> <div> CELEBRATE IT.</div> <div> If you know someone who needs help</div> <div> REACH OUT TO THEM.</div> <div> If you remember who you are</div> <div> TELL SOMEONE ELSE.</div> <div> <I> </I></div> <div> UPDATE: June 26, 2004: Fibromyalgia is still a major part of my life, but time and experience is teaching me how to live with it; Sleep is a bit easier these days, I sleep when I need to, and have given up that whole "8 hours a night" wishful thinking.  Some days, I can sleep all day, and be up all night; it's not ideal, and it's not always restful, but it's what IS......... and that has been a lesson unto itself.  It's not so bad.... it's fighting it that makes it worse.</div> <bR> <div> The pain levels are still an issue. I don't always know how to handle it.  There are days when my greatest goal is just to maintain a "9" because I fear a 10 would be too much to carry with me.  Those days, I consider it a blessing if I can sleep more  -- but often that's not possible. My grandkids make more than a considerable effort to make life sweet on those days, they bring me pillows to prop my arm on, or offer a shoulder massage.  I'm blessed with these people in my life, and I am truly GRATEFUL.</div> <bR> <div> PHYSICAL Pain can do nasty things to ones' spiritual journey.... but when taking a pause, to see where you've been...... can help a person enjoy the journey AND stay better focused on the NOW of it.</div> <bR> </td> </tr></table></body>