EVEN WHEN I AM HURTING LORD YOU ARE THERE. PLEASE LIFT ALL OF US WHO SEEK TO FIND ANSWERS AND ONLY FIND ROAD BLOCKS. SHOW US THAT YOU ARE THERE FOR US AND HELP US TO FIND OTHERS WHO KNOW OUR PAIN AS WELL. TEACH THOSE THAT ARE UNAWARE THE EMPATHY AND UNDERSTANDING THEY NEED TO HELP THOSE THAT ARE SUFFERING. GOD I ALSO PRAY THAT A CURE BE FOUND SOON NOT JUST FOR FMS OR CFIDS BUT FOR ALL THOSE WHO STRUGGLE WITH CHRONIC PAIN.
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Thank you for visiting me for a time, please do not mind my lack of punctuation....eeee gads.
My name is Susan, I am 38 and raising 4 teens. I have had Fibromyalgia for most of my life I suspect, but was DX 13 years ago. We believe but are not sure that a fall I took as a child from a horse may have precipitated the FMS. I experienced Idiopathic Seizures up to the age of 15 and then they went into dormancy even during giving birth and major surgeries. I had always noticed that my ability to keep up with others in sports and such took a greater effort on my part than most. I was loaded with mental energy but at times my body just did not agree. In my early twenties I suffered with Gall Bladder attacks for 3 years while all along doctors told me it was in my head. A therapist even told my husband at that time to ignore me that I was only trying to get attention because I was jealous of our new born daughter. I went to Chiropractors who gave me body braces to take away my pain, NOT and I went through the birth of my second child. My Chiropractor after learning of my second pregnancy suggested I abort due to my unexplained pain that he dubbed just back problems. Had I done that and listened I would have aborted my son just because I needed gall bladder surgery. After suffering for so long one night my body just gave out and I was no longer able to take in any foods. On my birthday I had my last attack which rendered me on the floor unable to breath talk or move and getting no help from my husband I crawled next door to family and subsequently came the diagnosis and operation. After finally putting a label to all my pain for years I was elated that it was finally over and I could have my life back. Shortly after the surgery I developed Tintinitus which is ringing in the ears, that to this day has not gone away. About one year later I started to develop pain in my back that surged up into my shoulders and neck to the point that I could not wear a bra or a bathing suit. I thought my pain was over and now we were searching for something else. After seeing an Internist I was told I had FMS and that it could be cured with time. Much time went by and I was not cured! I now was finding myself unable to wear clothes with any elastic or zippers and when I would buy new clothes they had to be cut to allow no constriction. I hid most of the time because I am fairly large breasted and going without a bra in public was more than I could bare, humiliation was more like it. Time went on and after many treatments of many different drugs the weight gain factor began to make an appearance. My self esteem went out the door and I cried alot because I was once beautiful and never weighed over 110 pounds. When I looked in the mirror I no longer knew the person I was looking at. I joined a support group and became the librarian for that group. I moved on from there to discover my own path because listening to nothing but negativeness and sadness drained me too much. In 1997 I mustered enough strength to attend college in pursuit of a degree in computers and or graphic arts. My pain did not allow me to finish as everything I was doing required arm movement and increased the pain. I also at this time was going through a second divorce and was left to manage 4 children and my health to boot. I broke down and attended an intensive out patient therapy program to help me gain some perspective and strength. From there I got better but still struggled with how I felt about myself and how I was ever going to raise my children alone with the difficulty I had incurred in dealing with this odd disease. We went through much travail and we were nearly homeless for a time until I gained internal strength and said, I HAVE HAD IT and I will do what it takes to make it better for us no matter how much physical pain I endure. I found a factory job and worked through sheer and utter stubbornness no matter how much the pain. I worked 40 hour weeks sometimes more and many times in over 100 degree weather with no fans. After one year of employment and looking forward to my bonus and a company shirt I had a grand mal seizure on that exact day while sitting at my computer at home. I was hospitalized with a severe concussion that took several months to heal from. While in the hospital all Cat Scans, MRI's and EEG's came back normal. So why the FMS why the Seizures and why all this pain and weakness. That is something all of us are dealing with who have chronic hidden illnesses. My doctor suggested Vocational Rehabilitation and this program has yet to do any good for me because I am barely able to function in my home let alone anywhere else. I was forced to go into my employer and tell them the secret that I hid so long, I have Fibromyalgia. To my surprise they had noticed my decreasing ability to keep up and had in fact already moved me to the easiest department they had. I felt so mortified and unappreciated I thought I had done such a good job at hiding at this because when I worked I gave 110 percent. Even with this they were not firing me, what a way to get out of paying unemployment. It became apparent to me that I had busted my butt for nothing for them and was only trying to prove to myself that I was normal like everyone else when physically I was not. My Lord how many days I went into the bathroom at work crying because I knew I had what it took to be their most productive employee all the while my muscles were saying NO. I also did it for my kids and I do not regret it but it was time to quit ignoring that I do have health problems and quit trying to hide my disabilities just because others have a negative opinion about them. One would think I know everything there is to know, WRONG. I have had many doctors all of them having no answers and most of them seem unsympathetic to say the least only wanting to give Band-Aids. In my search through the years I have come to find that our bodies change all the time so what may have worked one day or month may not work the same all the time.
Even as I type this I am in extreme pain but it is my only outlet. I am not a web designer nor do I know everything that is available out there but I thought creating these web pages would be cathartic for me while possibly helping others as well.
I have recently gone off all medications in a desperate attempt to try Alternative medications and or supplements only to find my doctor saying that because of the seizure medication I am on this is not possible. In updating this I have now currently gone off all seizure meds without my doctors permission and I am happy to tell you I have not had a seizure in over 5 months. When I was working last year I was not as bad as I am now, oh I hurt alot but not to the point I could barely drive or cook a meal or type on my computer. I was also medicated alot at that time. I believe the concussion I experienced that took 3 months to fully recover from may have thrown me straight into a full endless FMS flare from hell, since Oct of 99. I have tried every method that was suggested to me since being DX including; Tens units, Physical therapy, Exercising, Stretching, Warm and Cold compresses, Ointments and creams, Vitamin therapy, Walking, Journaling, Infrared treatments, Chiropractic treatments, Low carb diets, Noni Juice, Cortizoid shots, Oral steroids and probably more as my memory does not serve me as well anymore. As for Medications; We began with Pamelor which took away the pain instantly but left me sleeping for two or three days straight. After a bit of time and 30 pounds later my body adjusted to this medication and we found a need to switch tactics. I changed to Prozac though it did not help with the pain it helped me gain better focus. I could now sleep better and was less depressed. After a short time I began to lose some weight and then about a year later my weight leveled off and stayed the same. My pain intensified and I was put on many other medications to aid the Prozac which included every anti- inflammatory available. None of these worked so we stepped up to more anti-depressants. I was placed on Zoloft and a week later was taken off of it because it caused a seizure. Again it is sketchy for me to remember because it has been so long ago. Recently I was put on Paxil and Elavil which seemed to give me some good results. The down fall was that I was so drugged out and sleepy I could not reasonably function so I took myself off these drugs. I also tried a drug called Ultram this did not do a thing for me, though I have heard it has helped others. I also tried a muscle relaxer called Robaxin, this took none of my pain away it almost increased it and made me so tired yet I could not sleep because of the pain. I will never take that medication again. I am contemplating going back on the Prozac very soon but will be moving very slowly to make sure we know which medications it is that makes me so cloudy headed and drugged out. The current methods I am using now are; Flexeril, wearing a neck collar when I use the computer, Chiropractic care, instrumental relaxation music at night with incense and candles to relax, when I can afford it a massage therapist and hopefully I will soon have the energy to join yoga classes. I take vitamin C mixed with orange juice every day. I also drink slim fast in the morning to get my vitamins because my stomach is not accepting any pill form so far. My appetite is very low during the day but high at night. My sleep schedules or rather my days and nights are mixed up which I hear is very common. I try to drink as much water as I can and have bought a filter for the sink to take all the chemicals out of the water. I currently smoke and have noticed how much this drains my body and am trying to quit. I quit for 3 years and can remember how much better I felt when I did especially when I awoke in the morning. My new update in my online journal will show that I have now successly quit smoking but am experiecing severe throat infections for no apparent reason. I seek answers and what will work for me individually as all of us do. I am now 60 pounds over weight and still do not recognize the women in the mirror she has aged so rapidly. I may be losing my youngest child due to her fathers disbelief in my mothering abilities with what I have, even though I am desperately hanging on and she does not want to go. It is all one day at a time. I do believe that my faith in God has gotten me through this and had it not been for him and my mother I would not be here today. I know how important it is for us to love ourselves the way we are even if the way we are was not meant to be. If we, of all people cannot have compassion for ourselves in what we have been through how can we expect anyone else to either. Notice I said, compassion not pity. The most important love and acceptance must come from ourselves and God. If we can manage that then we are on the right road in beginning to heal all the pain we have been through. Underneathe this heavy body, the pain, the desperation, anger and sadness I am still the person that God created me to be and I am still deserving of all the love and joy one can hold, receive and give back. Never let yourself think or believe you are not and never let anyone else drag you into believing otherwise. Though you cannot see it at times the things you have endured have given you a greater gift of empathy, understanding and maturity. Those that have not yet learned this will be the ones that unknowingly discourage you. Feel sorry for them not agitated by them.
As for the woman behind the pain
Making web pages, journaling, poetry, graphic arts, Christianity, arts and crafts, long drives and traveling, pets and animals, gardening, home plants, downloading music from napster and making my own CDs, camping, fishing, boating, shopping, beaches and nature, out door grilling, collecting; oil lamps, candles and angels.
I was born in Orange County California and was raised most of my life in various parts of Michigan always having water nearby, Boy do I miss the water. I currently live in Indiana and we have been here 2 years. My children's names are; Deanna age-18, Douglas age-16, Matthew age-14 and Erica age-12. Please feel free to tell me your stories it will help all of us find a way and in the mean time help release what so painfully we hold inside.
All I ask is for your patience as I slowly put this site together....