Mary-Jo was 52 years-old when I met her in 1994, and it soon became apparent that she had diabetes, a thyroid condition and severe arthritis – which was painfully obvious in the cruel swelling and deformation of her fingers. I told her not to worry, her ills will be gone completely in no time flat. If she included about 6 oz of any kind of seafood in her diet every day, I said, she’ll be as good as new in three months.

Fortunately, she had read a book “A Sure Cure For Arthritis” many years ago, which also advocated a diet rich in seafood, although the author, a physician, did not know the reason why. However, she had not followed this advice until I reinforced what she had read earlier with the facts of the 72+ nutritional trace elements. It was enough to convince her to give it a try.

Within a few weeks, she began to notice substantial improvement, and then progressively more dramatic improvement. The pain and swelling of her cruelly twisted fingers had disappeared within the first week, and her arthritis receded rapidly from then on. About a month after we met, she held her hands straight out in front of her and said beaming from ear to ear, “look, look, I can see my fingernails again!” She was elated.

Her diabetes had also improved so dramatically that she found herself full of energy again, had no need to eat every two hours, visit the bathroom frequently, and could partake in the apple pie and ice cream she made for me, without any ill effects whatsoever. And the symptoms of her thyroid condition had disappeared as well.

After three months, by now in robust glowing health, she told me what she did not dare tell me on our first meeting. She also had had lupus, she said, and she told of the silent terror she had lived under all these years, in constant fear of this completely unpredictable disease. The only reason she finally told me about her lupus was that her lupus marks had disappeared completely as well. She was such a glowing picture of robust health by then that everyone noticed and commented in utter astonishment, including her 33 year-old son. Since his mother’s health and looks had improved so dramatically, and although he was in general good health, he and his wife began to include more seafood in their nutrition, just for good measure.

His only nagging worry had been a small but growing bald spot in his otherwise luxurious head of hair. After about a couple of months of more frequent seafood in their nutrition, while still far from daily, his wife made a startling discovery while serving dinner one night. She had stopped behind him, plates in hand, became bemused, and then asked, “where is your bald spot?”. He could not believe it. We all got up and inspected his head, but there was not even the slightest suggestion of a bald spot. Everybody then rushed into the bathroom where he could see this stunning ‘miracle’ for himself, and the excitement over the disappeared bald spot was total and shared by all – including myself. Although long used to ‘miraculous’ cures by then, it was not something which I had ever expected.

Reverse proof came just as dramatically. It was over Thanksgiving, and with being invited to her son’s, her daughter’s, her boyfriend’s children and her brother’s places for successive Thanksgiving dinners, she let the daily seafood routine slip. Having been in glowing good health again for several months by then contributed to her laissez faire attitude regarding the “something from the sea everyday” nutritional routine. Well, her symptoms promptly began to reappear, but disappeared just as quickly as soon as she went back on the daily seafood routine – this time though, with firm and unwavering determination.

The same scenario happened again over Christmas and New Year’s with all the turkey dinners among her family and friends, she went through the whole thing – the return of the symptoms and their prompt disappearance upon resumption of the daily seafood diet – all over again. I knew all about it; in the many years since 1985 that I have been on this nutritional routine, I have been through this many times. It works like clockwork.

When we first met, Mary-Jo’s 4 ‘incurable’ diseases (a common combination) had her resigned that she would not live to see her 60th birthday. Today, and more than four years later, Mary-Jo is a perfectly healthy, vivacious and very active woman without any traces of her former diseases, and she looks, feels and acts a full ten years younger than her age. Now she is convinced that she’ll hit 80 with flying colors, and that 90, and better, is well within her future. Her only complaint now is the price of seafood.

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My name is Cheryl and I’m just a mom and housewife, three kids and one husband. My daughter began some really strange movements when she was 8 yrs. old. We saw so many doctors early on that I lost count. We even made two trips to the emergency room because she just “couldn’t stand it” another minute. We had no idea what was wrong with her. Had her symptoms (early on) been more severe she most likely could of been diagnosed much easier…but…as things were it took nearly three years to get a diagnosis of Tourette’s syndrome. We were actually RELIEVED just to have a name for it and a prescription that was suppose to help.

The meds had to be switched quite a few times, they caused her to do some pretty scary things too!! She eventually ended up on Fluphenazine three times a day. It helped somewhat, but we had really hoped for a much better improvement after finding out what it was and all

Her tics worsened over the years. She began hitting herself, especially in her abdomen, head and hip area. Her arms were never still, she “cracked” her joints constantly, bending at the waist, paced the floors. Vocals tics began with allot of sniffing and a little snorting. Her facial grimaces became more and more obvious and I knew it was only a matter of time before things really “cut loose!!” It sounds silly but I was truly fearful for her, for what her life would most likely be like with tourette syndrome.

Entering her teenage years was not what we’d always dreamed of. She tried hard to fit in but as anyone reading this knows, that’s not always so easy. She’d always had a few friends and several of them stuck by her. Others would look her funny like

about a year ago I noticed in our daily paper a very small, very unusual ad (that still hangs on my “fridge” today) that simply stated: “Help for ADD/ADHD and tourette syndrome. Without Drugs.” Interesting I thought…what could these two disorders have in common??? Except that her big brother was the worst case of add/adhd and associated behavior problems I’d ever encountered!!! I tore it out of the paper but didn’t call at first. I figured it was some money making gimmick. My husband and I had “chased so many rabbits”, as he’d say, looking for help for the 17 yr. old brother that I was probably more skeptical than most would be. And I was certain I had exhausted any thing on the local level that might help my son with his problems. But.. being an inquisitive type of person, curiosity got the best of me and I did finally call.

It was another mom and housewife a woman who has since become a very dear friend of my family. She too had a child, a son with TS and ADD/ADHD but he no longer displayed ANY symptoms!! I pride myself just a bit, with my discerning abilities. I felt quite certain this woman was sincere and she definitely believed what she was telling me. We met the next day and I listened for hours as she told me how certain nutritional supplements had changed her family’s life. She felt certain that not only could my daughters TS be helped and my sons ADD/ADHD but also my husband…he had experienced terrifying episodes of Panic and anxiety for years. He’d been on all the meds imaginable and nothing helped too much. Just like the Ritalin my son took and the meds our daughter too.

As Christians we’d often prayed that God would send healing someway someday…by the time I left this lady’s home I was nearly convinced our prayers were about to be answered!! I brought home some of her own personal “products” and started my husband and daughter on them the following morning. (the 17 yr. old refused as he did anything we might suggest!) That same evening my husband came in from work and his exact words were “Cheryl, I don’t know if it’s that stuff you gave me this morning or what, but today was the best day I’ve had in years!” He was elated, but still not firmly convinced of why??? the change. I also thought I began noticing fewer tics in my daughter.

When she got off the bus, her arms were usually “just a going” but it seemed less. I didn’t say a word to her for fear of bring ing attention to it and maybe “jinxing” what I thought might be happening. By the following day, I was certain her tics were greatly reduced, but still refrained from mentioning it. The third day was a Sunday. She awoke and was getting ready for Sunday School when she said to me,,,”Look Mom.. and she held her arm directly out in front of herself and held it for what seemed like forever…with no motion at all!! She cried, I cried, the lady who’d placed the ad cried when she called at about that very time!

We slowly began weaning her off her meds which took abut 4 weeks. Today she remains off all medication. She still experiences a tic or two once in awhile. Usually when she is overly tired, over stressed or has eaten lots of sugar.

Her big brother eventually tried this “packaged nutrition” also. It wasn’t easy but we resorted to what any parent of an ADD/ADHD child would do.. we bribed him!! I know I know, sounds terrible.. but you’d have to know this child to understand!! Anyway, we paid him to take it the first time and have never paid him since. He takes it all on his own, usually without me even reminding him. Unfortunately he had already dropped out of school by the time we’d found these supplements but at least now this young man can think. He use to just REACT and usually it was explosive. Today he’s working as a carpenter and doing pretty well. Of course he still has allot of “learned” behavior problems to work on, but that’s the difference. Before there wasn’t even a remote possibly (short of a miracle) that this young man would ever work on anything, certainly not his problems!

I’ve checked into all this nutrition stuff. It’s actually been researched and scientifically studied over the past 40 years with much of it being published in various medical journals. After my own studying I now believe that many people have a deficiency of neurotransmitters caused by a lack of amino acids, essential fatty acids and other nutrients brought about by the drastic changes in our standard diet. Things are so processed and refined that even when we cook good meals for our family’s if the nutrition’s not in the can or box to begin with it certain isn’t providing our brains and bodies with all they need.

Sorry I’ve rambled on so long….You didn’t ask for a book. But I can’t hardly help myself. It’s criminal to know what I know and not tell other.. I simply must share it!

I thank you for this opportunity to tell others my family’s story

Be Blessed and Be a Blessing to someone else!!!

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by Beatrice Clark

It was early 1992 when my family first noticed signs that something wasn’t quite right with my mother. She was forgetful and ornery. Not like herself at all. At first, we didn’t think too much of it, but as time went on, she became more and more forgetful and soon began to say strange things. We would be having a conversation about something when out of the blue, in mid conversation, she would say something totally unrelated to the subject at hand. For example, if we were discussing the weather, she’d pop out with ” well, I won’t let her do that again” .. leaving us to wonder who, let alone what she was talking about. If we asked her what she meant, she would get upset with us for not following the conversation. Or sometimes she would say that she didn’t remember even saying it ! She thought we were nuts ! We called a family meeting one day to discuss what might be going on with her, and decided that she should see a doctor. Her doctor recommended that we go the Community Hospital where they performed a series of tests. Basically, they were mental exams. Mom could not draw the face of a clock for one of these tests. We were told that she had dementia; cause unknown at the time, but mini strokes suspected. After talking with her doctor again, we were told what we could expect; I don’t think any of us really quite believed it yet. Mom was always as sharp as a tack and had a memory that was phenomenal. She was very intelligent. But time proved the doctor to be right .. she became more and more forgetful, sometimes talking as if she were in another time, sometimes mean and nasty with my Dad, and finally she became delusional; thinking that her pants had 3 legs on them, or that the chairs kept rearranging themselves. It was heartbreaking. I would always tell her that she was right; her pants DID have 3 legs in them ( I’ll fix ‘em Mom) or yes, the chairs do seem to be in a different position (I’ll find out who’s doing it, Mom, and make them stop)

Mom began to live more and more in the past. She would often say things that would pertain to past experiences such as when she was a teen or a young mother in her 20′s. Yet she still knew US .. it was very strange. I must admit, as hard to deal with as it often was, there were times you couldn’t help but laugh at some of the things she came out with. Several times she said she was having a baby (at 68 ?) or she would ask us if anyone was watching the baby. There hadn’t been a baby in the family for years. Bless her heart, she loved kids.

Mom couldn’t be left alone anymore and we all had jobs so the only choice was to put her in adult day care. At first, she raised holy hell about going, but when I explained that it was a group for socializing, making friends and doing crafts, she relented and gave it a try. They were fantastic !! God bless those people. We were fortunate enough to find a day care with experience in dementia and therefore, they knew how to deal with her. She actually enjoyed going, and it was a big relief to us to know she was safe. At night, Dad did his best, bless his heart, but he still wasn’t sure how to deal with her sometimes and they argued alot. He would call me crying and upset until he finally realized that telling her what she wanted to hear was the only way. Now, this does not mean that you should let them do anything they want, especially if it is unsafe; but to work around it. Anyway, she was in day care for about a year. At that time it became evident that she needed to be in a nursing home. She had become aggressive, sometimes striking out at my father or someone else and Dad could not take care of her at home anymore. She had lost control of her bodily functions and had trouble walking ( she just forgot how) She lived more and more in the past. Yet, even then she still knew who we were. So when the day came to put her in the nursing home, she said to us “How can you do this to me ?” I can tell you that was the hardest part of all. We knew there was no choice, however, and so just did the best we could by her, in going to see her daily, etc. The first year, my Dad couldn’t bare to go there alone, so every night after dinner (we started feeding him at my house, to make sure he was eating right) I went up to the nursing home with him and we would feed her and put her to bed ourselves instead of letting the nurse’s aides do it. It was our way of “doing something” .. anything, because we felt so helpless. Plus, I like to think that she knew a loved one was putting her to bed .. not a stranger. Don’t get me wrong, the nurse’s and aides were wonderful ! Anyway, that went on for another year, until my sister moved back from Florida to help. God bless her ! I was pretty burned out by then, having my own family and job. We then took turns, every other night going up there with Dad. Whoever had him for dinner that night, was the one to accompany him to the home. Mom steadily got worse, until she only recognized us once in a while. Most of the time, she was lost in some strange world that we couldn’t get to. Often she would say she was having a baby (Mom was 69 yrs old at the time) or she would talk about times that she remembered from long before I was born. The last month of her life, she did not recognize us anymore, or if she did, was unable to let us know it. Mom developed pneumonia from inactivity and passed away on May 1, 1997; a mere 1/2 hour after my Dad and I left her. I remember telling her that night that it was ok for her to go. It was time for her to go “home” to her Mom and Dad. Never did I really think it would happen that night. Many times I have regretted that I did not stay with her that night so I could have been with her when she passed. It was kind of uncanny also,that she should pass that night, as the entire family met at my house to discuss what plans, if any, we were going to have in regards to our parents 50th wedding anniversary which was in late May. My brothers and sister were waiting at our house when Dad and I got there after leaving Mom. We had only begun our meeting when the call came, so we were all together to share the sad news and go back up to the nursing home to say goodbye. I was so glad we did. She had such a peaceful expression on her face; something I hadn’t seen on her for a very long time. As dearly as we loved her, and hated to lose her, we were all relieved at last to know that she had found peace and didn’t have to suffer anymore. Dad still came to my sister’s and my house for dinner every other night for the next year until he was too ill with cancer to come to my house anymore. Dad passed away Nov 22, 1999, approx. 1.5 yrs after Mom. I like to think of them up in Heaven together. Thank you for listening and allowing me share my story with you. I would also like to include a poem I wrote for my Mom the very night she passed away and read as a eulogy.

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I am 57 and was diagnosed in 2004 with early-onset Alzheimer’s disease. I was a bank manager and was very active in my community and church.

One afternoon, I left work and did not know how to get home. This was the start of a “downhill no return” into the Alzheimer world. I am now in my world, a world of confusion, fatigue, and most days, in severe pain.

I know there are days that I am more confused than others, and there are some days I am more agitated than others. I used to be this very independent, overachiever. And now, I am this very dependent underachiever, which causes me much frustration. Where things used to be very easy for me, all things now I find very complicated – even the easiest task.

My eyesight is unpredictable, so that leaves me with little reading time. But when I can read, I enjoy reading my Bible and spending time with God. I love it when my husband tells me it is time to go to church. There I find peace (even though sometimes it can be chaotic).

I now have a part-time caregiver, and she has been a lifesaver for me. She gets me out of the house, and I try to with my time with her help others. I go to a support group meeting near my home, which has been very helpful. I am hoping there will be a support group for early-onset Alzheimer’s disease coming to my area very soon, and I am looking forward to it.

I have a husband of 38 years that is very supportive, even though I know I put lots of pressure on him. He tells me he can handle it, and I love him even more. We have a 5th wheel camper, and we love traveling when we can. He is still employed, but we travel to the mountains and to a local lake where we can fish for crappie, which we both love to do. We own a pontoon boat due to me and my disorientation; I can fish from it much better.

We love spending time with our grandchildren. We have three (two boys, one little girl and another due in September). We have two daughters who are a great support to us, but we try not to put too much pressure on them because they have their husbands, work and children.

I have autonomic neuropathy and peripheral neuropathy, which gives me much leg and arm pain. This complicates things, but I am a fighter. I have much determination, so I keep on fighting and keep on going. God is good, and he will always remain on his throne. There is where I find my peace and draw my strength.

I never have what people call normal days, but each day is a day in its own and I thank God for every day. He gives me as someone else stated (which I can’t remember who), “I am thankful for this day God has granted me on this side of the soil.” Another one of my favorite’s is, “This is the day that the Lord has made. Let us be glad and rejoice in it.”

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I’ve been dealing with insomnia and problems with my sleeping pattern for about as long as I can remember. As a matter of fact, I had just allowed my mind to adjust to the fact that I was never going to be able to get a good night’s sleep. Sometimes, I would toss and turn at night and be unable to fall asleep at all and then the next night, I would fall asleep immediately, but wake up before too long with the weight of the world on my shoulders. I have dealt with this for so long that I was surprised whenever something happened which changed all of that in me.

I had gone on a long trip for business where I crossed through several different time zones. As a result of this, my sleeping became worse because I was dealing with jet lag. Somebody suggested to me that I should try taking some melatonin in order to overcome this difficulty. I was amazed that the melatonin not only helped me to overcome my jet lag, it also helped me to overcome my insomnia.

Melatonin is a natural hormone that is released in the body by a gland in our brain. It is typically found in concentrated levels before we fall asleep but in many individuals, it is not present in the levels that are necessary in order to get the sleep that we need. Taking a melatonin supplements about a half hour before I went to sleep helped to build up my body’s levels of this vital hormone and to allow me to get the sleep that I needed.

I began to study a lot about this hormone and I’ve learned that it is not only available in a pill form but there are things that you can do in order to help build up your body’s natural levels. One of the ways that this is done is by an amino acid that is known as tryptophan. Believe it or not, one of the ways that you can get tryptophan is through drinking warm milk. As it turns out, our mothers really knew what they were talking about whenever they told us to have a glass of warm milk before going to bed at night.

If you are having a difficult time sleeping and have been dealing with insomnia for a long time, perhaps melatonin can help you as well. You can either buy it at the local vitamin store or build up your natural levels. Either of these should help you to get the sleep that you need.

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The day my hands refused to work properly I sensed my “superwoman” days had ended! My body hurt all over, and I was so exhausted that it felt as though water, not blood, was running through my veins. Physically unable to carry on as senior teacher in a special school, I returned home believing that I’d be fine after a few days’ rest. I wasn’t to know that I’d already taught my last lesson and that a diagnosis of the pain and fatigue condition fibromyalgia would mean that my life would never be exactly the same again. So began what has been one of the most challenging yet fulfilling parts of my life so far – the road to better health and a new career as a life coach and author.

But what had led me to the point of coming to complete halt in such a dramatic way? Why had I felt so indestructible before then?

My post-war upbringing had emphasized values of responsibility, hard work and selflessness. Children back then were expected to be seen and not heard, and as I was sent away to boarding school at the age of 10, I wasn’t often seen either! With a sense of humor, music and sporting ability, I quickly developed the personal survival skills of independence and communication, becoming a “universal enabler” for everyone I met. I avoided conflict at all costs, and became a skilled people-pleaser. Years later, through my training as a personal coach, I came to understand that conflict is part of life and it’s how you deal with it that is the key to being comfortable and confident in your own skin.

My adult life has been littered with drama including divorces, and numerous operations including a hysterectomy and mastectomy. Through it all I clung on to the premise, “Onwards and upwards. It’s business as usual,” but when my body finally refused to play that particular game, I had to take a new look at myself. It was the best thing ever.

Fibromyalgia is an invisible, debilitating condition with a variety of ever-changing symptoms that, while not clinically life-threatening, are certainly life changing. My own difficulties were initially acute; gnawing muscle pain, fatigue, numbness, pins and needles, migraines, short-term memory loss, stomach problems and sensitivity to light, sound and touch. I was horrified to find that there was no consensus of medical care available and that nobody could offer a plan or way forward. Most of what I read at that time – in 2001 – was very negative and from a “victim” perspective. I had a sudden upsurge of indignation – I hadn’t survived all the stuff I’d already lived through just to give up at the age of 52! It was time for me to become my own enabler at last.

For two years I worked toward becoming a qualified life coach. I gave my own life a complete spring clean. Keeping the positive “essence of Pam”, I let go of values that no longer served me well, and put health and well-being at the top of the list. The work was motivating and energizing. I allowed myself time to “be” without guilt. I began to manage my improving symptoms without fear and make good choices for myself in line with the real me and my present needs.

I set up my coaching business Amethyst Accord Life Services, and began writing for UK Fibromyalgia’s Family magazine. Working with people by phone across the country, I realized that although everyone is an individual, the broader issues to do with living with chronic illness are universal. Despite all my clients moving forward, I didn’t feel I was reaching enough people with the positive coaching message, so I decided to write The Fibromyalgia Coach, a self-help coaching book for anyone involved in coping with long-term health conditions in general and fibromyalgia in particular.

I set out to provide a much-needed framework from which anyone can move forward at their own pace with Success Skills, Action Points, thought-provoking questions, supportive coaching commentary, and real–life examples of how others have adopted and adapted the ideas to suit their own situations. I’m delighted to say that feedback so far has been totally positive, with even GPs recommending my book to a variety of patients – not just those with fibromyalgia.

As for me, I’m fit, happy, and my hands are fine. Living with fibromyalgia has given me a deep understanding and acceptance of myself and I’m living a busy, fulfilled life with coaching, writing, speaking engagements, workshops and courses. I’m mindful of my life balance, the need to pace myself, and to seek help when necessary, but I don’t believe that fibromyalgia stops me doing anything nowadays. The Superwoman self-image is long gone, but the future looks great!

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by Angie Roberts

I am 39 years old and am happily married with 2 children. My story begins last year when I found out I had Multiple Sclerosis (MS). My diagnosis and the series of events that I experienced were quite a whirlwind, which is finally becoming a comfortable reality.

It all began with an incredible eye ache. I suffered for about a week. Then I went to an evening engagement where I drank several glasses of wine. I recall that detail due to the fact that my head stopped pounding. I felt cured, until the next morning. Then I assumed that I was experiencing a hangover but the following day, the ache was still there. I called my doctor, who then referred me to an eye doctor. I went that day. After a “light” exam, I was asked if I new what MS was. Of course I knew due to the fact that my dad has been suffering that disease for years.

The next thing I knew I was getting MRI’S, spinal taps, and horrifying results. It was a hard pill to swallow. I wasn’t sure about taking the drugs because they would give me side effects. However, I knew I needed to go that route, because I watched as my dad did nothing to try to help his MS and its shows – he’s in his early sixties, living in a nursing home, with a loss of all functions.

I have been on Avonex for the past year. The effects of disease in my case are minimal. I wear glasses and still have periodic headaches. I have to take things much slower in life and really stop to smell the roses. My husband has been a real rock in this whole ordeal. He is the one who gives me my injections once a week. He spends hundreds of dollars every month on vitamin therapy for me, and then makes sure I take them. Many times I joke on how “I am not a cheap date.” But truly, it is a thorn I deal with daily.

Right now I just have to be thankful that I can raise my two young children without them suffering from my predicament. If this is all I suffer in life…I should consider myself lucky. And I do.

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My sister Debi started feeling sick in early February. She had a fever for a few weeks and felt dizzy and weak. The doctors really didn’t do too much to help her at this time. She had to keep going back to the doctors because she knew something was wrong. Finally, they admitted her. They had found that she had lost a lot of blood internally. They ran a whole lot of tests on her. And then after a two-day stay in the hospital, I was visiting her along with her husband Nick and her two kids, Kristina (12) and John (15). The two kids went out of her room to buy a soda. In the meantime, the doctor came into her room. He was talking for a few minutes to her and then said, “by the way, we think you have leukemia”.

That was the beginning of a nightmare and a glimpse at how these doctors at Kaiser were going to handle this. The three of us sat there in shock at what this doctor just carelessly blurted out. I’ll never forget Debi’s face when he told us that. But then the doctor said that it’s 70-100% curable and that she would be just fine. Debi was worried about just going through the chemotherapy process, losing her hair, feeling sick, etc. Her real worry was that she could get an infection in the process.

Two days later she started her chemo for Acute Myeloid Leukemia (AML). She had to stay in the hospital and take a bag of it a day for 7 straight days. The normal dosage is 100mg a day, but later we found out that the doctor gave 170mg a day (they still argue that this wouldn’t have done the damage, but we all know better & we have a lawyer looking into it). Debi’s attitude was fantastic during those 7 days. She hardly got sick and she said her motto was “one step closer”. She was going to do everything possible to get one step closer to getting healthy again. She knew that she had to get a bone marrow transplant after the chemotherapy so me and my other sister, Sandi, got tested immediately to see if we were a match. Debi was really worried that she wouldn’t get a match. The odds of me or my sister being a match was about 25-33%. The results would not come back for 3 weeks however. Debi completed the chemo and everything seemed to be ok. But two days later, she went into a coma. That was on March 10, 2002. They had no real explanation why this had happened…at first they said she had an infection, then a stroke, and then bleeding from the brain…but no real answer for us.

Four days later, the doctors told my mom and Nick that they should think about “pulling the plug” because the brain damage was so bad that she’ll probably just be a “vegetable”. So the entire family got together to discuss what we were going to do. We decided that we didn’t trust what that hospital said, so we demanded that she gets moved to a better hospital. We wanted City of Hope, but instead they sent us to Kaiser Foundation Hospital in Hollywood.

When she arrived there, Debi was in bad shape. Her white count was almost zero because of the chemo. So she developed a fungal infection and pneumonia. After a couple weeks, they didn’t think she’d make it because of the infections. I remember the doctor telling me, my mom, and Sandi that she probably wouldn’t make it because “those infections are hard for a healthy person to beat, much less someone as sick as Debi”. But we all continued to sit by her bedside and talk to her. Nick and my mom were there everyday. Luckily, Nick’s work donated enough of their vacation days to him to total about six months. Debi’s eyes started opening after about a month in the coma. But of course she didn’t respond to much stimulus. But we all knew she was still in there. She stayed in the ICU ward in Hollywood for about six weeks. Debi did fight off all of the infections she had and her white count went up to the normal level. The leukemia was in remission. By the way, we found out that my sister Sandi AND myself were BOTH bone marrow matches for Debi. Debi was destined to be cured from this terrible disease.

The doctors held a meeting with us and basically said that she was PVS (persistent vegetative state). They said the brain injury was severe and that they’d never seen a case like hers (they said it was a landmark case). Although they didn’t come right out and say that it was from the chemotherapy, they kind of implied it. They didn’t give her much hope at ever being able to do much of anything. We never believed that, however. We wanted her to be in a brain injury rehab program. So, that’s when she went to Casa Colina Rehab Hospital in Pomona.

While there, Debi started responding by looking at who was talking, slightly moving her legs and hands when we asked. Sometimes we would tell her something, & her facial expressions told us that she was still in there (she just couldn’t get her brain to move her body). She’s on a feeding tube & a catheter, but until this time she never had to be on a ventilator to breathe…she was always able to breath on her own. Debi was really improving with the help of physical therapists, speech therapists, etc.

But after 3 weeks, she had an “episode”….it looked like she was having a seizure. So they rushed her to emergency at Pomona Valley Hospital. While there, they immediately put a vent in her to help her breathing. We knew doing this was bad for Debi because vents can cause infections and that’s not good with someone with leukemia. But after five days, we were able to wean her off of the vent. At one point in that week, we thought we were going to lose Debi because her vitals were so bad. Sandi, my mom and myself rushed to the hospital one day because Nick thought she was going to die. But they gave her morphine and that seemed to get her heart rate stable again. She must have had a lot of angels with her that day

Debi proved to be a fighter once again and made it through all of this. So after two weeks in ICU, they sent her to Kaiser in Riverside. Kaiser would not let her go back to Casa Colina because they didn’t want to pay for it anymore (and battling Kaiser is another story that I won’t get into here).
Debi has been in Riverside Kaiser for 3 weeks now and her progress has been unbelievable! Nick does physical therapy with her all day. Debi can move her legs and arms better than ever. About two weeks ago, she laughed for the first time. My mom and I were telling her a story that was funny & Debi started laughing. And of course Nick had just left the room so he didn’t get to see it. When he returned five minutes later, he didn’t believe it, but we mad her laugh again. She laughed about 8 times. I thanked God that I was there to witness that. We all three were crying because we were so happy. Over the next week, she would only laugh maybe once a day. Nick would tell her to move her finger for yes and then ask questions. She was able to communicate that way. It takes her a while to move what she needs to move, but we see she is progressing. She is definitely NOT PVS like the doctors thought. She’s even trying to make some sounds. Two days ago, I made her laugh over and over. She probably laughed about 20 times. My sister and I got along really well and every time we talked, we’d both be laughing till it hurt. Yesterday (June 29), she laughed alot as well, so it’s becoming more consistent. We also saw her nodding her head. The nurses have been excited about her progress as well. It’s almost as if that “seizure” she had at Casa Colina sparked something in her brain because she’s never been more responsive.

So that’s where we are. Debi is a fighter and we know she will get through this and hopefully be well enough to get the bone marrow transplant if she still needs it.

Thanks for your prayers,
Sheila

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My daughter (who is now a happy healthy 19 yr old) was in a car accident when she was 9. She was knocked unconscious for about 20 min and had a concussion, which led to severe headaches for over two years. She was put on Amitriptyline for about 6 months or so (hard to remember exactly how long after this time!). It helped, but it did not completely get rid of the headaches. Looking back, I would say that her brain needed the time to heal and there was probably no drug we could have put into her that would have completely removed the pain.

It was very hard for us to see her hurting. We also noticed cognitive effects after the injury. As an example, she was (and still is) a very bright kid, but for the year after the accident would frequently (and seemingly randomly) not be able to do pretty easy math problems. Her teacher, who knew her well from before, commented on this. She did seem to recover from this after about a year or so.

The good news is that she did recover–the headaches got less frequent over time and are gone. It took much longer than anyone explained to us, though. And it was a fight sometimes to advocate for her to the doctors and school.

One thing about the Amitryptyline to watch for is that it can cause tremendous weight gain. I saw this in our daughter and also in a friend that took it. She lost the weight over time, but it made her very uncomfortable.

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I was a very obese kid growing up, but extremely intelligent. I didn’t get a long with my peers very well and was often considered to be an outcast. Most of high school, I didn’t have a very active social life. My mother was an OCD neat freak and made me afraid to go out in the world. Her fears became my fears and I became afraid of the world. My grandmother lived with us and she was emotionally abusive. My mother and step-father were in constant yelling matches with us and each other. Losing weight is hard and my home is filled with bad food. It was an awful time. I was so depressed I slit my wrists and needed a blood transfusion. I also hung myself and broke the branch. I also overdosed on meds. Needless to say I survived each attempt. I didn’t get my drivers license until I was 20 because I was afraid. I was a mess, a real mess. I was working a dead end job, making minimum wage and riding a bike to dead end job and living with my mother

The change was small and gradual at first. I started going to the gym three times a week for an hour. Then I started dieting. I lost weight. I’ve yoyoed but I’m 100lbs less right now than when I was big. I had flunked out of high-school. I went back to Adult Ed. Then I went to a community college to take remedial course. I got into a good college. I’m a year away from getting my B.S. in nursing. Most of the time I was depressed when I did this….because I was still friendless and I didn’t have emotional support.

A change then happened two years ago. I begin meditating and imagining a warm loving light around me. Those voices in my head that said,”you’re stupid.” I didn’t hate them back or fight them. Instead, I just used an imaginary technique and told them they were wrong and I love them and I love myself. I also started to consciously make an effort to find things I liked about myself and my life. Little things like how I liked my smile, and I was happy to have such a great computer. Lots of positive self-talk on my life and my circumstances. After a while I learned to love myself. Anyone, who was negative I avoided like the plague. These inner changes eventually manifested itself to where I was able to show love to other people. There isn’t anymore “fighting” with depression because for me the war is over. I cling onto positive thoughts.

Look I don’t know where my life is going. Sometimes I get downright depressed because I’m single. Sometimes I feel disheartened and tired. I still haven’t reached my fitness or academic goals. Depression comes sometimes but not as much as it used to. I’m not super depressed anymore…no suicidal urgings or anything. For the most part I’m content. I can live with content, much better than depressed. I’ve been this way for two years now. Its possible to end the cycle of pain by learning to accept yourself who you are, and looking at the positive aspects of life, and avoiding negative and unhappy people. Relapse and remission is forever unavoidable but it can be minimized and the triggers that make it occur can be removed.

Good luck!

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