Survey of Forty EMS Patients - October 2007

Part 3

OPTIONAL QUESTIONS: Questions 11 and 12 were entirely optional. Most people answered at least one of the questions and most answered both questions. Each question has two (2) parts.

Note: All responses have now been added as of February 17, 2008.

Second Note: I have included all replies: serious replies, sarcastic replies, ambivalent replies, and "other" types of replies, etc., in order to show readers the full gamut of how EMS respondents think and react emotionally to certain "trigger" questions, etc., at this time. I think it's actually okay to learn how others think who may not respond typically or as we might expect. I do believe that to some respondents, for differing reasons, answering a few of these questions proved to be difficult to do in what some might call an "expected" manner. I did delete a few letters of one slightly off-color word used in one reply.

Third Note: I did not submit any of the questions. All questions were from others with EMS. I think one or two respondents thought I had asked the question(s) or some of them - or forgot I didn't. - faith rumph

Question 11: Part A

What is the worst thing as of today about your having contracted EMS?

"Loss of a life."
"The worst thing about having EMS is being unable to fully participate in life and fulfill dreams."
"The social isolation and the pain are the worst things that have happened to me."
"The constant and chronic pain, weakness, fatigue and inflammation."
"The worst thing about EMS is the cognitive damage, leaving me unable to learn anything (no short-term memory), unable to process information, which leaves me unable to deal with others professionally, etc. I am in constant pain, requiring the use of very powerful medications. I have lost most of my life, as I have been bedridden for the past 3 years."
"Never knowing how I will be feeling in a week or two weeks so can't plan things."
"Being limited as to what I can do or not do because of pain in the feet. For instance, I can't walk for exercise, and it's no fun to go somewhere like Disneyland, etc."
"Loss of job, friends, marriage, activities, unable to work or play hard or make plans ahead of time."
"It's still early. I don't know what the rest of the day will bring. There is a lot of stress in my life."
"Pain daily. And what I consider a good day. Most of all is the doctors out here in Arizona just have NO idea about EMS. So I feel like I'm starting over."
"Fatigue."
"The loss of my career, energy and being hosed by my lawyer."
"Unable to attain good pain management."
"Pain, weakness, atrophy in legs."
"Undoubtedly chronic back pain with recurrent sciatica. The back pain began as a minor and infrequent ache pre-EMS but increased in frequency and intensity post-EMS. A close second is the inability to strengthen muscles that were affected by EMS. The back pain and weak muscles have limited me physically in more ways than I care to think about- range of motion, stamina, strength - and emotionally as well - depression, self-image."
"The fear of what more is to come."
"Lack of support of others; loss of previous life; unable to find supportive informed doctor. Distrust of over the counter products and RX drugs."
"The worst thing is the physical limitations EMS has placed on me. For example, I can no longer play the piano."
"I would say the muscle weakness, spasms and tiredness."
"Only able to work part time, thus part time income for a full time budget."
"I cannot come up with a "worst" thing, since I am thankful that I am a survivor."
" I went from a 35-year-old young, active healthy woman with a newborn to living every day in pain, discomfort, one physical crisis after another, never knowing what the next day will bring. I just recently asked for one week off with nothing going wrong, to give me a break. I didn't get the former instead I got the latter. I lost my balance, fell and broke 4 ribs."
"The loss of my ability to walk more than half a block and all the things it has deprived me of; being deprived of the pleasure of interacting with my grandchildren, as I did with my first two pre-EMS; having to live with constant pain; I could go on and on but I'l stop now."
"The pain and fatigue. No social life. Not being able to work."
"The pain and the inability to be 'normal.'"
"I have not been able to continue my career, which I loved greatly, due to pain and body weakness."
"Pain, low energy level, restrict my life."
"My dependence, not being able to do all the things I used to do, especially by myself."
"Chronic pain."
"Pain and fatigue are debilitating and constant, yet my mind is active and I make plans I cannot fulfill..... even after 18 years!"
"The fact that a compromised immune system allowed my cancer cells to run rampant and multiply in my body. A healthier person would not have developed cancer, simply fought off the disease."
"For the last four years, calcinosis - very painful ulcers all over my body. I am pretty much housebound."
"Miscellaneous fatigue at any time for days or weeks; I seem to have an aversion to noise and too much multiple input, focus."
"Still having few answers and no cure."
"Sleep disorder, lack of energy."
"The worst thing has always been loss - of a normal social and family life and loss of my music career and writing career."
"Even the minimal conducting of my life is still very difficult for me to do."
"Loss of my life as to how it was pre-EMS almost overnight and have never regained much of it for those closest to me as well as for myself."
"Two heart attacks with no risk factors prior to EMS ??; two cervical spine surgeries: 1) c6-7 exploded, Doc puzzled 2) T1 through C7 - had to have bone graft displacements? since they were all collapsing onto spinal cord. Now left with very severe pain in back of neck as all the muscles had to be cut to access them; that's why I don't do too much sitting at terminal at computer - too painful to stay there very long."
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Question 11: Part B

What is the best thing that has happened to you as a result of having EMS?

"Wisdom through Illness."
"The best thing that has happened as a result of having EMS is that it is has drawn me closer to God and I have developed a greater awareness of how to walk in faith and draw upon the relationship."
"Having all of you on this Web site to ask questions to and get support."
"Having more empathy for people who are in chronic pain and realizing that many people are in worse shape than I am with horrible diseases and cancers."
"There is ABSOLUTELY NOTHING can in any way be considered good that has resulted from EMS."
"Can't think of any great thing but being more sympathetic to others who suffer also and am grateful that I am better off than some."
"The settlement from Showa Denko, although I don't think it was sufficient."
"More time to read."
"My family and Dr. Lambert who used to be at Stanford Hospital."
"My faith in God has grown; with Him all things are possible. I have found that EMS is not the end of the world and that there is still work I can do."
"Nothing good came from it."
"Surely you are kidding? Well, there was one thing, lawyer su.... - Sorry but I could not find a better word. Well, one more, getting to know you." {Sorry - I had to censor the word. I expect you knew I would. - FR.}
"It has made me far more empathetic to other people. I also think I tend to try to help others a lot more as I really appreciate any help that I get. It has also made me appreciate the small things in life that people tend to take for granted."
"Reasonable financial settlement from maker of LT."
"The amount awarded my three children (ages 11, 9, and 5 at the onset of my EMS) gave us seed money to establish investment accounts for them. The amount awarded my husband and me added substantially to our retirement funds."
"Meeting the other people who have it and learning how to deal with other difficult things."
"Stronger faith in God and myself."
"The best thing oddly is that it has made me appreciate life much more."
"I have met a lot of nice people online and become involved with NEMSN doing the newsletter. After losing my hair, it has grown back wavy although never as thick as it was."
"Can't think of anything today that would make it a best thing about this illness."
"Learning to stay away from health food stores!"
"I have made a lot of friends who also have EMS. Living in a physical hell, knowing that sex would be painful, a relationship would mean having to meet someone who was empathetic to living with someone who had so many physical things go wrong leaves very little for which to be happy. I work to keep my spirits up to help my son who also feels at times that life isn't worth living, making the best of his pain and discomfort in having had EMS since he was born."
"Absolutely nothing!"
"I count my blessings for what I have, but as far as I am concerned, I have not had a "best thing" happen, just illness."
"The friends I've made."
"I have "met" a fine group of people online who also have EMS. I have met a fine doctor who consistently helps me physically and who has been encouraging in every way over the years."
"I think I've learned a lot about patience and acceptance. I also got a huge example of how many people love and care for me, sick or well. Wisdom and love come many ways, EMS just happened to be a powerful one for me."
"I have been able to continue to work inspite of severe cognitive issues in the early years."
"Meeting Faith."
"Personal and spiritual growth."
"I know my own body much better and am in touch with distress signals."
"Nothing."
"I am aware of my body's needs."
"Learning to NOT dwell on it, patience."
"Had to re-evaluate my priorities and learn to take care of myself."
"My family and friends have been wonderfully supportive especially in assisting me to raise my daughter even though I am able to do little in return. They have been helpful even though they can't understand why I don't just get over it, which I don't understand either."
"Getting to know some people that I otherwise would not have [had] the opportunity [to meet]."
"Nothing? (divorced?) oh well."
"The best thing has been meeting via the internet (mainly) many interesting people with EMS all over America and in Canada who share the problems and frustrations of living with a disease like EMS. I am lucky to have met some in person at one time or another, as well, and to have talked to many more on the telephone."

Question 12: Part A

If you could name only one thing that has MOST helped you in dealing with EMS, what would it be?

"My husband."
"The one thing that has helped me in dealing with EMS is patience [and] pacing myself."
"Support of my close friends."
"Pain pills, muscle relaxants and prayer."
"My strong belief in God has helped me get through these years."
"Finally after almost 2 decades being able to put a name to my ailments."
"My faith."
"Morphine."
"My faith in God and prayer and people praying for me and with me."
"Finding an awesome neuropsychologist who saved me from a pity party and probably much worse."
"A great support network."
"Intelligent, empathetic spouse."
"Acknowledging my limitations, not pushing myself beyond those limitations, and resting as needed (not that I actually do these things on a regular basis.)"
"You and the Internet."
"Determination, newsletter, Internet."
"I honestly believe from my own experience that the macrobiotic diet turned my health around for recovery."
"I guess just realizing that a lot of people are much worse off than I, so just dealing with what was handed to me and not complaining. I look normal and can carry on a mostly normal life, although [I] am tired and muscles are weak all the time."
"Faith/religion."
"Learning to stay away from health food stores!"
"Swimming and water aerobics."
"Being diagnosed finally after 7 years of bouncing from doctor to doctor."
"The support of my family, particularly my sister."
"Prayer; and help from my mother and Meals-on-Wheels and nursing association."
"Self-hypnosis."
"Treatments from my osteopathic doctor."
"NSAIDs that dampen the inflammation and pain meds when I need them to cope."
"Muscle relaxers; this support group has been most helpful to me in learning to cope as well as in anticipating what may be next. I see clearly that our symptoms vary though there are some commonalities."
"Attitude."
"Laughter."
"Unequivocally, exercise."
"The knowledge that my husband would always stand with and by me because of our devotion to one another, and our common religious beliefs have also been a comfort. Consequently, I have never feared abandonment or divorce. My son and one brother, in particular, also helped me immensely. So I guess my answer is family and faith."
"Nothing but my excellent doctors who try their best. I've tried everything they suggested but nothing ???"
"The acceptance of the disease and knowing how to deal with it mentally."
"Maintaining as much positivity as possible."
"Finding a loving partner, and a really skilled physiatrist."
"My belief that it is possible to recover and manage even deadly, painful conditions to enjoy some aspects of life and make some positive contributions to others."
"Contacts with others with EMS."
"Morphine."
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Question 12: Part B

Is there some medical or health-related advice you would like to know either from other people with EMS or from experienced physicians?

"What is being done to help sleep disorders besides heavy medications?"
"I would like to hear from others with itching and sleep problems."
"I can always use advice and education about EMS or other conditions that came from having EMS."
"In response to the question you sent on the 30th regarding scaling skin, I have found that Emu Oil penetrates better into the hardened skin and also is good for muscles and inflammation."
"No matter what's wrong with any of us, we should remember to do the things that help us the most, exercise if we can, eat right, get enough rest (if we can sleep)."
"More info on bowel incontinence."
"Not really."
"A cure would be nice... laughs."
"Yes, I would like to know if the EMS-affected fascia are preventing my muscles from becoming larger and stronger."
"How to talk to a doctor so they will respect you and give you information but not in terms you need a medical degree to understand but not talking as if I am 6 years old. Also, what information to bring with you if you have to see a doctor who has never seen you before."
"Not offhand."
"My son, X-husband and I all have EMS. I was the sickest. My X uses the medical model, has had 15+ surgeries and looks sickly. I have had no surgeries and I look very healthy. Few people believe I could be disabled. My son still despises both worlds; since supplements made him sick he is confused. He always did better which we tested when he was younger in two week intervals, following the holistic model and will probably end up following it when he gets through the growing stages of life. He is now 21 in 2007."
"Make sure you go to a doctor that believes in EMS and FM (Fibromyalgia)."
"Do we have CFS (Chronic Fatigue Syndrome), and what is the test for this, and how do we get our docs to test for this? Is there a treatment (for CFS)? and "When do they find a cure? LOL I guess these are not real questions, are they? Just wishful thinking on my part."
"I'm always interested in hearing new things that help people deal with this illness."
"I would like to know, but how possible is it to get an answer to the question: what lies ahead? The white brain patches are quite scary."
"How do I get rid of it?"
"Any help for fatigue? Is the US pharmaceutical industry making the symptoms worse? I've given up on US health care and have stopped going to US doctors. I now see one in Mexico that is unaware of my medical history with EMS and doesn't speak English. I'm amazed by what he has seen and the simple prescriptions that have made a significant difference thus far."
"No."
"Calcinosis help."
"Stay as active as possible."
"I always read advice from your emails and the EMS newsletter when I have received it."
"Has anyone been tested for Lyme antibodies? If not ask your physician for lab test for this. Physicians should test EMS patients for this."
"Are there any experienced physicians or any who really care? Does any research indicate this will ever end or just by death?"
"I would like doctors or physical therapists who understand EMS to explain or to put forth an example of how a person who has become deconditioned due to EMS can begin to strengthen their body through some kind of exercise regimen."

Contact Faith at: faith_rumph@yahoo.com

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Survey of Forty EMS Patients - October 2007 (Part 1)
Survey of Forty EMS Patients - October 2007 (Part 2)

Posted February 16, 2008