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| WELCOME TO FIBRO TALKS
A Site dedicated to all that suffer from Fibromyalgia and Related Disorders, and for their friends and family that don't always understand them. Fibro Talks will contain stories of how we cope and sometimes 'Can't' Cope with this devastating Illness. If you have FMS, live with or know someone who does, please share you story with me. You might just be the one person that can help change the life of another. Below you will find true stories from Fibro-Angels that have been willing to share their thoughts and feelings. Please be patient, as I also have been living with FMS for 27 years, and will try to add stories, information, and awareness information as often as I can. 2006 Letters from Glenda's 'Fibro Angels' Below Thank you ((Hugs N Hope)) Glenda K Schlueter (CCsLilSis) (c) 2004 |
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| March 1st. 2006
Dear Glenda, I wrote this for you.May God bless you and and give you many blessings from above. My story. Imagine the worse you have ever ached from a bad case of flu,then imagine living with those symptons twenty four hours a day,seven days a week,three hundred sixty five days a year.Imagine never getting a good nights rest.Every step you take being painful.Always that feeling of nausea and dizziness. Yes,those of us who suffer from FMS and CFS smile and we laugh but this does not mean that we are not in pain.We work very hard not to be miserable.We love our family and friends and long to enjoy life doing things with them.We feel guilty when we have to cancel our commitments to them because FMS refuses to give us warning of how we are going to feel from one day to the next. We awake each morning so tired and un-rested.We drag ourself out of bed to face another day of pain,depression,anxiety, and what ever else Fms decides to put us through on that day. All of the x-rays and MRI's show nothing,but this illness is real,it is not just in our heads as many believe.Who in their right mind would ever want to suffer the excructiating pain of this illness? My doctors have seen my left leg when it swells.It is numb and aches.The MRI's that they do show nothing.Could I make this pain and swelling up in my head?I don't think so. The Social Security Administration tells us that we can go to work.I would like to give them our symtoms for just one hour so they might understand.Just because we do our best not to give up on life, they must think FMS is not that bad.I do not expect anyone to feel my pain,just for them to understand that it is real. Most days I suffer from what is known to us with FMS as brain fog.My thoughts are not clear,I can't concentrate.It is confuseing and hard to focus on anything. FMS is known as the invisible disease because those of us who suffer with it do not look sick.It does not show up on x-rays or MRI's,so therefore most doctors believe it does not exist.Keep looking for a doctor who will believe you.Don't give up and keep hope that there will be a cure found for this painful,debiltaling disease. All my love and prayers to my fibro friends .Janet |
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| June 11th. 2006
Hey Glenda. came across your pages and stories, 3 am--unable to sleep after lavendar bath, reading, deep breathing, calming music, valerian oil.... i was dx officially with bipolar at age 23; fibro at age 28. now, going on 30 and lookinb back has been 10+ years of breakdowns, accomplishments, pain, doctors/chiropractors/massage/aromatherapy/acupuncture/drugs/TENS unit/PT/diet modifications........... most helpful i have found is weekly acupuncture combined with extensive topical/inhalation aromatherapy treatments; gentle stretching; and avoiding food allergens and sensitivities. but, all of that takes extensive money which is not allways available. i have an appt with dr on monday for medication mgmt for the depression/anxiety/anger that has become overwhelmin and unbearable and also something to hellp manage the severe pain until i'm able to get back to acupuncture/massage. thanx for sharing your stories. nice to know we are not alone. ~aundrea |
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| June 17th. 06
Glenda dear!, I have to say a HUGE thank you for your wonderful site...........I have found a few others who like myself have Fibro, and when I read the letter from FIBROMYALGIA I got teary eyed..........it was exactly what I would have writen had I been an author of such a letter. I have just recently been diagnosed with FMS/ MFS with severe anxiety and depression. Of course the FMS/MFS were last to be added to the list.......... until then I heard so many times "you have not tried hard enough", " you are giving up too easy", "that muscle will come back even after 5 years" and so many other lines of PURE BS! My own husband until my actual diagnosis kept telling me I needed to work on my strength, build my muscles............he had no clue until the Physical medicine doc said FIBRO........he now understands more, and really tries so hard to be supportive. I know he tires of my sounding off about the chronic pain, as well as the other symptoms I have, so I try not to load too much on him, he works so hard now that I cannot....truely a devoted husband. So with this recent diagnosis (just last Autumn), I began to reflect backward in my health history. 1989 birth of last child triggered Hashimoto's Thyroiditis. January 1991 mysterious "cyst" in lower right lobe of Thyroid found, biopsied, consistant with carcinoma, but inconclusive. I was put on low dose thyroid hormone, in the hope that it would make the "cyst" go away.........it made it grow more instead. Late summer 1991 an Endocrinologist finally comes to the small town I live in, I was 1 of her 1st patients. She attempted a needle biopsy, the growth was by then huge and internally choking me, she could not get a needle into it it was solid. September 1991 I saw a surgeon, and it was concluded that no matter what this growth was that part of my thyroid had to come out. Surgery done then 4 days later return for staple removal. Pathology report was in..........I had Papillary Carcinoma of the right lobe of my thyroid......outcome removal of the remaining tissue. The surgeon opened my throat back up and found the left side began to do the same thing the right had done in just that short 2 week time frame. I had to wait 6 weeks for my system to be depleated of ALL thyroid hormone, then received orally ingestion of Radioactive Iodine Isotope, and I was isolated for about 4 days. I was at this time a single mother of 2 very small girls........how we all got through that time was beyond me, as I had no help around, and as I drew closer to the 6 week point I grew more tired, sluggish, and barely could bath myself, and somehow my girls came through ok. It was such an emotional time as my step dad died from cancer 9 days after I was released from my isolation........... |
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| For many years I had unexplained neck "flare ups" as I called them. I would wake not being able to lift my head as the pain was so excrutiating it literally felt broken. I developed muscle problems, low blood sugar, gall stones, and strange imflammation attacks. I had to under go a 5 year point body scan for the recheck on the thyroid cancer in 1996, strangly the time frame was exact to when I had first had my thryroid taken and was treated. Well this 5 year point almost killed me literally. I suffered from postural hypotension, increased muscle enzyme production due to my muscles feeling totally fried and weaker than normal. I was hospitalized and given Nitroglycerin for my chest pains, and many other meds, my system had rejected the thyroid meds once I went back on them, so that was the cause of all of this in 1996. Blown veins, rubbery legs and arms, and bowel shut down, as well as not being able to make any body heat. WHAT A TIME! My key statement then was " 5 years and Free"............LITTLE DID I KNOW!
Slowly I recovered, and began to work my way to being the busy bottom I once was. Mover I used to be, lists of to do's and got anything in my mind done, including remodeling our house(refinished hardwood floors by hand sander, tore out old kitchen , wired, floored, insulated the new kitchen), I was also working full time again. LOVING IT!!!!!!!!! I had a career in direct care for many years, and it lead me to pharmacy work. I became a certified pharmacy technician for a widely nation known retail pharmacy, loved my job, worked hard, trained newbys, ran that pharmacy well. I was beginning to feel tired and unexplicably anxious though suddenly about the late winter of 2001. My back began bothering me(lumbar, and neck), but I plugged away the best I could. I had just gotten my 1 year pin for service, and I blew my knee out at work. My knee cap had come off track, and i was treated like garbage by my employer, their insurance comany and the comp nurse who continuiously violated my pravacy at doctor appointments. I had taken the FMLA to keep insurance going on hubby and kids, and 1 month we had it the next they cancelled it. I went round and round. The knee specialist told me after surgery to not baby my knee.......ummm hello how can one walk at all with a calf in 1 complete spasm, and a very painful lateral release poiunt just above the knee, and still no muscle cooperation??????? DUH! I was treated as if I was seriously faking........oh yes I am so powerful inside this body I can tell my 1 group of Quad muscles "now you stay like you were when that knee doc first saw you!" give me a break! |
| So eventually I was fired, never allowed back to the job even with limitations, and comp kicked me off.......the law suit was a joke and in no way would they conceed to a connection between work and this knee injury. Typical I later discovered. So here I am all of these years later.......I am incontinent bladder and bowel, severe muscle loss continued, and now weakness striking other areas not previously hit. I have all 18 points, I have a degree of spina bifida (found in 2001), scoliosis(lumbar) nerve damage (lumbar), herniations (thoracic) DDD(degenerative disc disease) spinal spurring, my neck is bone on bone, and I fall more than I care to admidt. My legs give out, good old faker quad muscle I control (laughs) and it's counter part on the other side now.........
It has driven me almost insane, or so it felt..........sleep deprivation, mood swings, menopausal issues due to radiation at age 24, and then hysterectomy at age 25......damaged ovaries. My body cannot handle replacement hormones as I have fibrocystic breast disease, and have had 2 lumps removed already from the same breast. It feels like living in a genetic nightmare! What other parts will I lose ????????? What is next ????????? I have issues with that, and those without fibro do not understand that what is next thinking.............this is a lonely disease. I intend to begin a local support group for Fibro families in a short time from now. I have docotrs that are willing to referr people to me to become part of this venture of helping, guiding, and gently loving others who deal with this disease daily. I am a very spiritual person, in that , I do believe in a higher power, and nature is ment for us to admire. I also grow healing herbs and flowers, as well as many house plants. I hope someday to come up with an herbal mixture to help ease the suffering of fibro patients. Until then I will just send out love and kindness to those who have just stepped into where I have already been. I too tried to run from myself..........now it is time to acknowledge my limitations, and not exceed them, and it is time for me to love others unconditionally.........for there is no truer love! Love , healing light and beautiful bouquets of flowers to all Angi (Bunniemayflower@yahoo.com) |
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| *UPDATE*
October 2006 We have talked often that Fibromyalgia is heriditary. I know that from my own family as my Daughter Sandi has it. I was very surprised to find that my cousin was recently diagnosed with FMS and Bipolar Disorder. She is my Mother's Great-Niece. I guess that tells us how far down the Family Line it can go. Bless her heart, she is only 19 years old, with a new baby. Scared of course, as we all were when first diagnosed. She seems to be accepting and handling her 'new' life much better over the past couple of months, and I am so proud of her. Each tme I receive a letter from one of my 'Fibro Angels', my heart goes out to you, and I hope I can say the right words to help. When I received the first letter from our sweet Rachel, I was taken aback. She didn't know anyone in the family had either illness, and I had no idea what she had been going through. As with most situations like this, it's somewhat easier to counsel others that you don't have close emotional ties to. That's why I want all of you to know that going back and reading your letters helped me to try to help her. God's Blessings to each and every one of you, Glenda (CCsLilSis) |
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| Thank you so much for Visiting! Please come back soon. Glenda (CCsLilSis) Updated 04/11/2008 |
| Welcome to Glenda's Fibro Angels |
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