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Help! has anyone had to be a caregiver for a melanoma patient and have CFD?

Forums Caregiver Community Help! has anyone had to be a caregiver for a melanoma patient and have CFD?

  • Post
    jag
    Participant

    I don't know why God does this to people like me.  Here I am just getting over CFD and now my husband just got a diagnosis of stage 3b melanoma.  

     

    I don't know why God does this to people like me.  Here I am just getting over CFD and now my husband just got a diagnosis of stage 3b melanoma.  

     

    My little girls are 9 months and 3 years old.  It's Steve's night for bowling and I've just returned home from a 10-hour day at work.  Whew, this "reorganization" at work is a killer, barely allowing us time for grabbing a cup of soup to eat on-the-run.  I have a new supervisor and four other new associates I am training while I also learn how to handle new work brought in from California and Indiana.  No one knows at all what to do if I am not there to direct their every step.  I think I am "Super Mom".
     
    I have just celebrated my 30th birthday, then abruptly gotten the "flu".  I'd been more tired than I ever had been the last couple weeks, but I heard on the radio that if you got sick you wouldn't get better any sooner if you stayed home and rested.  I never imagined I had "mono which would never go away".  Since then I've always wondered what would have happened had I not heard that statement on the radio.  I was too sick, tired and stressed to go to the doctor so I assumed it was the "flu" and would go away within a couple weeks. 
     
    I fed my daughters, turned on the TV. and put the baby to bed.  I returned to the living room and the television, forcing each step. “I can do this" I said to myself.  Feeling spent beyond words, I laid down next to my 3-year-old in front of the television.  I am so thankful Tammy, the 3-year-old, has played outside so she is "winding down".  I literally cannot even move.  I lie there until Steve returns from bowling at 9:30 when he carries me into bed.  I immediately fall into a deep sleep and wake up feeling very groggy and wiped out, but force myself to get up and go to work.     
     
    Well, it is now 2010 and I'm still waiting to get over this "flu".   I think of the fateful days when I thought I could "do it all".  Now, I can barely take care of myself.  In the first days of my illness I managed to hide it from everyone at work.  I knew something was terribly wrong, but thought I would one day just feel better.  It never happened.  
     
    Before I was sick I was one of the most "mellow" people I knew.  I could get along with almost anyone and always had a song in my heart.   Now, I became irritable, forgetful and impatient.  I didn't even recognize or like myself. 
     
    At first, I just felt like I had mono all the time.  I felt I was still doing a pretty good job at work although at one point I asked for 1 ½ weeks off due to my health.  My daughters didn't understand when I told them I couldn't go to their field trips, watch their dance lessons or go to church.  I had always looked very much forward to going to church because it always helped me find the strength to go on.  I still tried to make sure they got there on Wednesday nights because it was so important to me that they learn about God. 
     
    I remember one time my daughter was particularly insistent so I finally broke down and went along on a field trip.  We had to hike quite a ways and got lost.  By the end I could barely walk and I knew I would spend the next couple days in bed.  It was always about priorities.  My work always won out because we needed the money, but, work was hardly my priority.  
     
    When I was well, I loved my work, but, as it became the only activity in my life I resented it more and more.  My family and faith had always held the closest places in my heart and I had neglected both FOR YEARS.  How would my daughters grow up to understand my spirituality when I couldn't take them to church?   It broke my heart every day.  What was this monster that had such a control over everything in my life?
     
    As time went on, things at work started to spiral downward along with my health.  I went to the doctor and was told I was depressed.  I said, "Yes, I am depressed.  I am sick all the time."
     
    Finally, after about five years of illness, I was reading an article about a "yuppie flu" called Chronic Fatigue Syndrome (CFS).  The article mentioned that if you never felt well you may have it.  I knew in my heart I had the answer.
     
    I called my clinic and asked if there were any specialists in CFS.  I was given a name and made an appointment.  The doctor confirmed my suspicions; I had CFS, but there was no known treatment.  He asked me what level of activity I could maintain as compared with before ill. 
     
    I couldn't remember how it felt not to be sick every day.  Then, the biggest toll was an emotional one.  I was given the option of taking antidepressants, but, I hated taking drugs so decided to forego them.   
     
    I heard about a documentary film about CFS that sounded interesting.  Perhaps I could use that to explain to my relatives what I was going through; it was aptly named "Living Hell".  But, I was still in somewhat of a denial and never watched it.  If I denied being ill, could I somehow "push myself" through the day?  I had never encountered anything before where I couldn't just work harder to surmount it. I didn't know those were going to soon be considered my "good" days. 
     
    I started missing more and more days of work.  It was impossible to "will" myself through the workday anymore.  How would I keep my job and my sanity?  There was a shakeup at work.  In those days it was known as reorganization.   All of our work was totally changing.  At the same time, the pains in my body and memory loss seemed to overtake me.  I could no longer function at work.  It was as if, no longer afforded the luxury of doing the work I had known, my secret was out.  I couldn't learn the new work or keep up.
     
    I missed more and more work days and was referred to the Human Resources area.  My attendance was jeopardizing my job.  I went to the doctor who put me on disability.  Oh, what heaven to rest when I needed to and still manage to watch a softball game.  I could handle the pain enough to function that much.
     
    My doctor told me "most patients improve slightly over time."  Was I like "most patients"?  I knew deep in my heart my health was still deteriorating slowly, but, I wanted so badly to think I was going to improve.  How long could I continue on disability without losing my job?  I knew if I started to work part time that I would be waiving any disability benefits.  I prayed and hoped I was doing the right thing by working part time and arrangements were made.
     
    I was grateful to still have a steady income although I hated the work I was given.  I tried to make the best of it.  I worked four six-hour days, but, I knew it was still too much for me.  My husband wanted to start his own accounting firm for small businesses and we needed to keep benefits.  He was working part-time on getting his company started while also working temporary jobs.  So, I arranged to work the minimum 21 hours a week in order to keep our health insurance.
     
    Then, the unthinkable.  My 16-year-old daughter was pregnant.  She had joined a local Christian youth group.  Some of her "nice" friends that I knew were in it so it seemed a natural replacement for church.  I was unaware until later that it was for "at risk" kids.  I asked her why she wanted to be in it and she replied "to help the others".  I talked with a leader and was impressed by her beliefs and caring so I let Tammy remain in the group, asking her to make sure she didn't become the one influenced by them instead of the other way around.  
     
    I now knew it had been a mistake.  She had taken a boyfriend who had severe family problems and we had even let him stay in a tent in our backyard that summer.  Despite our talks with him about "respect" we instantly knew he was the father.  He had never been able to trust adults and convinced her to do the same.  
     
    I didn't choose to be sick, but now I wondered, "How can I tell my daughter I can't help her with a baby so she must place it for adoption?"  I had never prayed so hard.  To this day, I believe many small miracles occurred to get our family through this intact.  I now have a beautiful 5-year-old granddaughter who is with a wonderful family and is in kindergarten.
     
    However, I knew my "brain fog" and pain threatened my job more and more.  We heard the project our section was working on was being eliminated and so would our jobs.  Inside, I was relieved.  After 28 years of working, 17 of them while sick; I would be able to try to focus on healing myself. 
     
    I did a lot of praying and was laid off in the first group.  I had made the cutoff of "early retirement" age by one month and would be able to keep my health insurance.  I also received a much-needed severance payment.  My prayers were answered.
     
    That was in 2001 and we are still focusing on my trying to manage my illness and Steve getting his business built(only now he has melanoma).  It does well enough to support us only during tax season.  He works a part- time job during the summer to help make ends meet.  I feel I am no longer able to work and am pursuing social security disability benefits which I know I deserve.  To go to court and convince the judges of this will be an arduous task I am told, but, a necessary one.  
     
    Although I am in constant pain and can go out only infrequently, I have found reasons to be thankful.  My computer serves as a lifeline to the rest of the world.  I am still very grateful for my faith, family and friends.  In fact, I hope to find a new "family of friends" here, never have I seen such a supportive group.   Emotionally it is overwhelming.  Is there anybody who knows of a support group for just caregivers with CFD?  
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Viewing 19 reply threads
  • Replies
      bcl
      Participant

       Hi, I think you should also post this on the main board – people read here, but not many post. Is CFD/CFS chronic fatigue syndrome? If so, maybe have your thyroid checked – and if it's in the low/normal range see if you can get a doctors help to move it higher.. this worked wonders for a good friend.  I work part time and have fibromyalgia, a chronic pain syndrome which mimics chronic fatigue at times    .. but it took a lot of  pool rehab to get me to this point.  linda

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        jag
        Participant

        I have had my thyroid checked and it is in the normal range, what are you trying to say?

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        jag
        Participant

        I have had my thyroid checked and it is in the normal range, what are you trying to say?

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        bcl
        Participant

         I asked you to clarify your condition, then I gave you a tip that helped a friend with CFS. I also said I have FM -another  misunderstood contrition -but  you have CFD and I am probably barking up the wrong tree,  sorry!

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        bcl
        Participant

         I asked you to clarify your condition, then I gave you a tip that helped a friend with CFS. I also said I have FM -another  misunderstood contrition -but  you have CFD and I am probably barking up the wrong tree,  sorry!

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        bcl
        Participant

        make that condition, I don't have my glasses on yet :)

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        bcl
        Participant

        make that condition, I don't have my glasses on yet :)

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      bcl
      Participant

       Hi, I think you should also post this on the main board – people read here, but not many post. Is CFD/CFS chronic fatigue syndrome? If so, maybe have your thyroid checked – and if it's in the low/normal range see if you can get a doctors help to move it higher.. this worked wonders for a good friend.  I work part time and have fibromyalgia, a chronic pain syndrome which mimics chronic fatigue at times    .. but it took a lot of  pool rehab to get me to this point.  linda

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      DebbieH
      Participant

      "I don't know why God does this to people like me". 

      Are we supposed to take this post seriously?  Your husband has a life threatening cancer and you whined on and ON about yourself.  I'll trade my melanoma for your CFD – whatever it is.

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        jag
        Participant

        Nobody believes people when they say that CFD is a real disease, but if you were in my shoes, you would not say what I think you are saying.

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        jag
        Participant

        Nobody believes people when they say that CFD is a real disease, but if you were in my shoes, you would not say what I think you are saying.

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        bcl
        Participant

        Wait a minute, this poster said they would trade a possible death sentence for a condition you said you were getting over  (Here I am just getting over CFD)  -I sure hope this is someone messing around and not the original poster.

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        bcl
        Participant

        Wait a minute, this poster said they would trade a possible death sentence for a condition you said you were getting over  (Here I am just getting over CFD)  -I sure hope this is someone messing around and not the original poster.

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      DebbieH
      Participant

      "I don't know why God does this to people like me". 

      Are we supposed to take this post seriously?  Your husband has a life threatening cancer and you whined on and ON about yourself.  I'll trade my melanoma for your CFD – whatever it is.

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      djpayn
      Participant

      I cant believe your selfishness.

      I feel sorry for your husband.

      You probably dont stop whining about yourself long enough to even listen to how he feels about having a DEADLY disease!!!

      Take an extra nap, gulp down an energy drink, and try to put your husband first right now.

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        jag
        Participant

        are you saying he is going to die?  Who will take care of me?

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        jag
        Participant

        are you saying he is going to die?  Who will take care of me?

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        TinaR
        Participant

        if this isn't real…it has to be a male fabrication- who else would add "who would take care of  me" . Only a misogynist-  this place is overloaded with that type sad

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        TinaR
        Participant

        if this isn't real…it has to be a male fabrication- who else would add "who would take care of  me" . Only a misogynist-  this place is overloaded with that type sad

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        LV
        Participant

        Lol, so true. Out of all the things I worried about, who would 'take care of' me wasn't even on the list! I didn't even know that someone had been taking care of me. No wonder I go wrong.

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        LV
        Participant

        Lol, so true. Out of all the things I worried about, who would 'take care of' me wasn't even on the list! I didn't even know that someone had been taking care of me. No wonder I go wrong.

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      djpayn
      Participant

      I cant believe your selfishness.

      I feel sorry for your husband.

      You probably dont stop whining about yourself long enough to even listen to how he feels about having a DEADLY disease!!!

      Take an extra nap, gulp down an energy drink, and try to put your husband first right now.

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      TinaR
      Participant

      I don't know if there is a forum for Melanoma caregivers with CFD and as you can tell ;)  a patient-oriented cancer board isn't always the best forum for sharing caregiver stress and feelings. The off-topic board is the better place to share feelings related to a family member's Melanoma diagnosis –but it's not a safety zone. This site used to be an easier place for  sharing & support- unfortunately the dynamics of the board have changed significantly in the last couple of years.  You can still find help and  comfort provided you can navigate the complexities of sharing with a wide range of people with their own health problems and different opinions about the rights of others. Remember- you never know who is reading. Cancer patients are like anyone else…everyone is in a different place.  There may be patients ill from treatments or dying, people who've lost their family members, some frightened, those who are kind, compassionate,giving– others out of their minds, mean, judgmental or vengeful- or any combination at different times!  Dealing with cancer (patient or caregiver) doesn't confer saint-hood- it strikes nice people as well as assholes. It's a crap-shoot who replies- the same goes for what you read on an Internet board. You have to take the bad with the good and make it work for you.

      It's easy to be overwhelmed when your spouse is diagnosed with ascary disease. Add  a health issue of your own, financial trouble & little children – you probably feel ready to run naked and screaming down the street. Normal and many others share your thoughts… and suffer silently. That's sad, too. God doesn't DO any of this to us- it is just life. LOTS of people get shit of one type or another and some get multiple doses– it's the human condition.  Why not you? Some situations we create by the choices we make– other times it's completely out of our hands and all we can do is find a way to cope with what we have.  It makes sense to take advantage of all the tools out there to find stability . 

       I don't have answers for your particular illness…there seems to be a lot of info on the web about CFD . Medication seems to be a cornerstone of treatment. You might  have to decide which you  hate more…facing the chaos the same way or taking a pill that might make your life more manageable during the really bumpy times. If it were me, I'd weigh the quality of my life ( and the quality of  life for the little people who need me) against ideas about medication — how I cope affects everyone in the family.   Talk therapy is great, but you can't talk yourself out of a real illness. Would that you could…we would all chat up cures.

      I hope that you can find a way out of your despair and can be strong for your husband ( and kids!)  Melanoma isn't always a death sentence… but he has a  very serious cancer stage. You must respect the possibilities and get yourself into a place where you can handle all the ups and downs that come with being the spouse of a patient with a life threatening disease.  It IS made more difficult while fighting a debilitating, energy-sucking health crisis of your own – but you need to be the best you can be for you and your family.  Good luck finding what works for you.

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        jag
        Participant

        Thank you for understanding, I get scared by the medication, I've been addicted to drugs before and I don't want to follow that path again.  I would prefer to find something holistic.  I was just starting to get better with meditation and aromatherapy, and then Steve gets this diagnosis, and we have to spend all of the time in the hospital talking about scary treatments.   I miss appointments with my therapist, acupuncturist, yoga classes, all of the things that I need to be well.  Am I going to have to give this up? Can't Steve beat melanoma with this kind of therapy?  It is said that one must heal the mind before healing the body, I don't believe in harsh chemicals, surgey, or traditional medicine at all.  They treated my mother with all of that stuff, and she just died anyway.  

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        jag
        Participant

        Thank you for understanding, I get scared by the medication, I've been addicted to drugs before and I don't want to follow that path again.  I would prefer to find something holistic.  I was just starting to get better with meditation and aromatherapy, and then Steve gets this diagnosis, and we have to spend all of the time in the hospital talking about scary treatments.   I miss appointments with my therapist, acupuncturist, yoga classes, all of the things that I need to be well.  Am I going to have to give this up? Can't Steve beat melanoma with this kind of therapy?  It is said that one must heal the mind before healing the body, I don't believe in harsh chemicals, surgey, or traditional medicine at all.  They treated my mother with all of that stuff, and she just died anyway.  

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        TinaR
        Participant

        Oy, hmmmm. I'm going to pretend that my bullshit-o-meter hasn't gone off the chart  [dian ?!!!] and I'll answer this as I would anyone with your type of  problem.  What follows is only my not-so-humble opinion.  Remember- you asked!

        No, you can't heal cancer with mind games. BUT you can do all that touchy-feely chanting, incense sniffing, twig/root/leaf eating and howling at the moon if it makes you feel better— as long as you are taking care of this initial Melanoma the proper way—-removal/diagnosis/further surgery and diagnostic procedures to check for systemic disease ( checking to see if  it's spread to other locations) . After-you can decide to do nothing, go alternative or take advantage of whatever adjunct therapy the MELANOMA SPECIALIST recommends or you choose to deal with the possibility of future recurrences. To do anything less than complete surgical treatment of the original Melanoma is just asking for trouble and very irresponsible – but it's his life/his choice.Take the drugs that help YOU or not- but doing the same things hasn't worked for you.

        I pray you insisted on birth control ( and HPV/STD testing)  for your eldest  and I believe Cognitive Behavioral Therapy  could help your entire crew. I'm so very sorry about your Mom, but hope you will come to see that someone dying of their disease isn't a very good reason not to take care of a different disease! Doing all the right things and still not getting the best outcome happens to many people. Sometimes cancer, or other disease, just can't be cured- but not taking advantage of the verified method of  mainstream surgical healing is almost a guarantee you will not find a cure. Spontaneous remission isn't unheard of– but it's rare. Your husband  should  complete the course of surgical treatment for his original Melanoma and after that- whatever.

        Again…Good Luck!!

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        TinaR
        Participant

        Oy, hmmmm. I'm going to pretend that my bullshit-o-meter hasn't gone off the chart  [dian ?!!!] and I'll answer this as I would anyone with your type of  problem.  What follows is only my not-so-humble opinion.  Remember- you asked!

        No, you can't heal cancer with mind games. BUT you can do all that touchy-feely chanting, incense sniffing, twig/root/leaf eating and howling at the moon if it makes you feel better— as long as you are taking care of this initial Melanoma the proper way—-removal/diagnosis/further surgery and diagnostic procedures to check for systemic disease ( checking to see if  it's spread to other locations) . After-you can decide to do nothing, go alternative or take advantage of whatever adjunct therapy the MELANOMA SPECIALIST recommends or you choose to deal with the possibility of future recurrences. To do anything less than complete surgical treatment of the original Melanoma is just asking for trouble and very irresponsible – but it's his life/his choice.Take the drugs that help YOU or not- but doing the same things hasn't worked for you.

        I pray you insisted on birth control ( and HPV/STD testing)  for your eldest  and I believe Cognitive Behavioral Therapy  could help your entire crew. I'm so very sorry about your Mom, but hope you will come to see that someone dying of their disease isn't a very good reason not to take care of a different disease! Doing all the right things and still not getting the best outcome happens to many people. Sometimes cancer, or other disease, just can't be cured- but not taking advantage of the verified method of  mainstream surgical healing is almost a guarantee you will not find a cure. Spontaneous remission isn't unheard of– but it's rare. Your husband  should  complete the course of surgical treatment for his original Melanoma and after that- whatever.

        Again…Good Luck!!

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        dian in spokane
        Participant

        Rox, I meant to commend you on how thoughtful and kind your response was yesterday, especially after seeing some of the mean comments that also came along.

        You are a princess!

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        dian in spokane
        Participant

        Rox, I meant to commend you on how thoughtful and kind your response was yesterday, especially after seeing some of the mean comments that also came along.

        You are a princess!

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        TinaR
        Participant

        Well, I AM a Princess- thanks ;) ….but I have to admit that after reading some of the comments today…I thought YOU might have written another one of your fun letters to the board ;)  I hope it isn't a real person – one less Melanoma patient is a good thing!

         

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        TinaR
        Participant

        Well, I AM a Princess- thanks ;) ….but I have to admit that after reading some of the comments today…I thought YOU might have written another one of your fun letters to the board ;)  I hope it isn't a real person – one less Melanoma patient is a good thing!

         

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        dian in spokane
        Participant

        nono! it wasn't me! me.I completely believe that this is a real person,. Someone who has gone through, and is going through a life changing illness. I know plenty of people who have suffered from CFS or Fibromyalgia, and I know that it can be overwhelming.

        If you then factor in an ignorance of melanoma..and by that I mean…maybe she is just clueless about how serious her husband's illness is, then it's all believeable. Maybe her husband, who has been HER caregiver for a long while now, has even shielded her from the realities of his disease. Of course.. since she posted Anon..that leaves others the option of posting as Anon and appearing to be her…so that bit about 'who will take care of me' could just be someone else chiming in ..NOT ME Though!

        While I suppose I still have the capacity to make up some post to foment lively discussion…it wouldn't be of this sort. Nothing that would poke at actual illnesses. Not my style.

        But sadly.. the style of others who have been here, so I suppose it could be that. You know me. I always like to believe that people are up front,.

        dian

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        dian in spokane
        Participant

        nono! it wasn't me! me.I completely believe that this is a real person,. Someone who has gone through, and is going through a life changing illness. I know plenty of people who have suffered from CFS or Fibromyalgia, and I know that it can be overwhelming.

        If you then factor in an ignorance of melanoma..and by that I mean…maybe she is just clueless about how serious her husband's illness is, then it's all believeable. Maybe her husband, who has been HER caregiver for a long while now, has even shielded her from the realities of his disease. Of course.. since she posted Anon..that leaves others the option of posting as Anon and appearing to be her…so that bit about 'who will take care of me' could just be someone else chiming in ..NOT ME Though!

        While I suppose I still have the capacity to make up some post to foment lively discussion…it wouldn't be of this sort. Nothing that would poke at actual illnesses. Not my style.

        But sadly.. the style of others who have been here, so I suppose it could be that. You know me. I always like to believe that people are up front,.

        dian

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      TinaR
      Participant

      I don't know if there is a forum for Melanoma caregivers with CFD and as you can tell ;)  a patient-oriented cancer board isn't always the best forum for sharing caregiver stress and feelings. The off-topic board is the better place to share feelings related to a family member's Melanoma diagnosis –but it's not a safety zone. This site used to be an easier place for  sharing & support- unfortunately the dynamics of the board have changed significantly in the last couple of years.  You can still find help and  comfort provided you can navigate the complexities of sharing with a wide range of people with their own health problems and different opinions about the rights of others. Remember- you never know who is reading. Cancer patients are like anyone else…everyone is in a different place.  There may be patients ill from treatments or dying, people who've lost their family members, some frightened, those who are kind, compassionate,giving– others out of their minds, mean, judgmental or vengeful- or any combination at different times!  Dealing with cancer (patient or caregiver) doesn't confer saint-hood- it strikes nice people as well as assholes. It's a crap-shoot who replies- the same goes for what you read on an Internet board. You have to take the bad with the good and make it work for you.

      It's easy to be overwhelmed when your spouse is diagnosed with ascary disease. Add  a health issue of your own, financial trouble & little children – you probably feel ready to run naked and screaming down the street. Normal and many others share your thoughts… and suffer silently. That's sad, too. God doesn't DO any of this to us- it is just life. LOTS of people get shit of one type or another and some get multiple doses– it's the human condition.  Why not you? Some situations we create by the choices we make– other times it's completely out of our hands and all we can do is find a way to cope with what we have.  It makes sense to take advantage of all the tools out there to find stability . 

       I don't have answers for your particular illness…there seems to be a lot of info on the web about CFD . Medication seems to be a cornerstone of treatment. You might  have to decide which you  hate more…facing the chaos the same way or taking a pill that might make your life more manageable during the really bumpy times. If it were me, I'd weigh the quality of my life ( and the quality of  life for the little people who need me) against ideas about medication — how I cope affects everyone in the family.   Talk therapy is great, but you can't talk yourself out of a real illness. Would that you could…we would all chat up cures.

      I hope that you can find a way out of your despair and can be strong for your husband ( and kids!)  Melanoma isn't always a death sentence… but he has a  very serious cancer stage. You must respect the possibilities and get yourself into a place where you can handle all the ups and downs that come with being the spouse of a patient with a life threatening disease.  It IS made more difficult while fighting a debilitating, energy-sucking health crisis of your own – but you need to be the best you can be for you and your family.  Good luck finding what works for you.

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      Bonnie Lea
      Participant

      I am sort of confused.  you just turned 30? and you have been ill for 17 years? and have worked for 18 years? and your 16 year old dotter just got pregnant? and you also have two more little ones, one under a year?  But I do not know what CFD is  CFS I understand, it is one of the debilitating things, that wacks you out.  Not unlike dealing with day to day cancer issues. 

       

      CFS is real.  But melanoma is deadly.  You ask who will look after you if your husband dies?  I am sooo confused.  Your husbane will be needing your support, before his diagnosis was he there for you?  Any other family, like siblings, parents, grandparents.  You were so young when you had your first child.  No wonder you are overwhelmed.

      Continue to speak to your doctor.  Melanoma needs to be treated.  if you find yoga, and holistic approach good for your illnesses, that is a thing for you to continue, but your husband will have to have a long assessment, and some surgery perhaps, then begin his wellness.

       

      Bonnie Lea

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      Bonnie Lea
      Participant

      I am sort of confused.  you just turned 30? and you have been ill for 17 years? and have worked for 18 years? and your 16 year old dotter just got pregnant? and you also have two more little ones, one under a year?  But I do not know what CFD is  CFS I understand, it is one of the debilitating things, that wacks you out.  Not unlike dealing with day to day cancer issues. 

       

      CFS is real.  But melanoma is deadly.  You ask who will look after you if your husband dies?  I am sooo confused.  Your husbane will be needing your support, before his diagnosis was he there for you?  Any other family, like siblings, parents, grandparents.  You were so young when you had your first child.  No wonder you are overwhelmed.

      Continue to speak to your doctor.  Melanoma needs to be treated.  if you find yoga, and holistic approach good for your illnesses, that is a thing for you to continue, but your husband will have to have a long assessment, and some surgery perhaps, then begin his wellness.

       

      Bonnie Lea

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        bcl
        Participant

        Bonnie love, I think someone is messing with us, no one can be this selfish…

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        bcl
        Participant

        Bonnie love, I think someone is messing with us, no one can be this selfish…

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        TinaR
        Participant

        And I want to hear all about her first pregnancy at age 9!  Maybe she had a typo and she just turned 39? ! Let's hope- best story all year~

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        TinaR
        Participant

        And I want to hear all about her first pregnancy at age 9!  Maybe she had a typo and she just turned 39? ! Let's hope- best story all year~

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        Bonnie Lea
        Participant

        hmm factoring in  age 30  getting CFS at age 12?  Having a baby at age 14 and now two more one under a year? and working for 18 years   working from age 12?  baby at age 14  I cannot comphrehend.  unless cos she said her grandotter is 5 means her dotter is now 21  Oh my shunt is failing!!

         

        I hope her husband is ok.

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        Bonnie Lea
        Participant

        hmm factoring in  age 30  getting CFS at age 12?  Having a baby at age 14 and now two more one under a year? and working for 18 years   working from age 12?  baby at age 14  I cannot comphrehend.  unless cos she said her grandotter is 5 means her dotter is now 21  Oh my shunt is failing!!

         

        I hope her husband is ok.

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        TinaR
        Participant

        Ohhhhhhh, I  just re-read her story…it appears that Tammy ( now 21) was 3 when the Yuppie flu hit our gal. She fast-forwarded to 2010- lotsa background story in there.  She was 30 and NOW she is 49ish ? Or something like that…my math skill is  not nearly as advanced as my grammar or punctuation( so you might want to try to figure it out yourself-ha! )

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        TinaR
        Participant

        Ohhhhhhh, I  just re-read her story…it appears that Tammy ( now 21) was 3 when the Yuppie flu hit our gal. She fast-forwarded to 2010- lotsa background story in there.  She was 30 and NOW she is 49ish ? Or something like that…my math skill is  not nearly as advanced as my grammar or punctuation( so you might want to try to figure it out yourself-ha! )

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        Bonnie Lea
        Participant

        Oh I do hope so Linda.  I have never in my life met anyone quite like this.  scares me to think if indeed it is true. I mean come on……  what has any of all that to do with her husband having melanoma….Hope you are right m'dear.

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        Bonnie Lea
        Participant

        Oh I do hope so Linda.  I have never in my life met anyone quite like this.  scares me to think if indeed it is true. I mean come on……  what has any of all that to do with her husband having melanoma….Hope you are right m'dear.

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        LV
        Participant

        I'd have to agree, LInda. And it looks like this is something that was mostly written some time ago, for some other purpose, then updated to include a sentence or two about her husband's MM. Maybe the writer is fishing for sympathy, but she seems to have enough self-pity so as not to need any from anyone here. Maybe she'll be lucky enough to find that board for melanoma caregivers with CFS.

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        LV
        Participant

        I'd have to agree, LInda. And it looks like this is something that was mostly written some time ago, for some other purpose, then updated to include a sentence or two about her husband's MM. Maybe the writer is fishing for sympathy, but she seems to have enough self-pity so as not to need any from anyone here. Maybe she'll be lucky enough to find that board for melanoma caregivers with CFS.

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        Bonnie Lea
        Participant

        and I just now think on Mary (Cassandra) who's husband had either alz or dementia and she was left all alone with her severe melanoma, and handled as besst as she could.  Even after her husban died, up until her death she tried and tried.  She was one strong woman for sure!

         

        But what is CFD?  Hope she talks more about her husand, so we can at least offer hiim advice.  I know what I would say, but of couse shall not.

         

        Bonnie Lea

        survivor of so many things, and strong.  (wondering how I could incorporate my ailments in a signature)  something like hmmm

         

        Melanoma 2B, LMM, earlid one, brain shunt, and loss of two boobs due to breast cancer. surprise Oh My! oh ya and achilles tendon problems arising on second leg.  I need a job.  (Bob says a street corner)  shame on him!!

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        Bonnie Lea
        Participant

        and I just now think on Mary (Cassandra) who's husband had either alz or dementia and she was left all alone with her severe melanoma, and handled as besst as she could.  Even after her husban died, up until her death she tried and tried.  She was one strong woman for sure!

         

        But what is CFD?  Hope she talks more about her husand, so we can at least offer hiim advice.  I know what I would say, but of couse shall not.

         

        Bonnie Lea

        survivor of so many things, and strong.  (wondering how I could incorporate my ailments in a signature)  something like hmmm

         

        Melanoma 2B, LMM, earlid one, brain shunt, and loss of two boobs due to breast cancer. surprise Oh My! oh ya and achilles tendon problems arising on second leg.  I need a job.  (Bob says a street corner)  shame on him!!

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      LV
      Participant

      Now that we know about your CFS, please tell us about your husband's diagnosis – this IS a cancer board, after all, and when it comes to melanoma, the people here are extremely helpful and caring. Where was his primary? What has his doctor reccomended?

      While a dx of 3b is not a death sentence, you should know that malignant melanoma is a deadly disease, and the treatments can be debilitating. I hope you'll take some time to read the Main board. You'll find patients at all stages of this disease (and other caregivers) who can help you navigate through the options you'll be presented with. I'm not sure if any have gone a strictly holistic route.

      I don't think god has it in for you personally. Good luck.

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      LV
      Participant

      Now that we know about your CFS, please tell us about your husband's diagnosis – this IS a cancer board, after all, and when it comes to melanoma, the people here are extremely helpful and caring. Where was his primary? What has his doctor reccomended?

      While a dx of 3b is not a death sentence, you should know that malignant melanoma is a deadly disease, and the treatments can be debilitating. I hope you'll take some time to read the Main board. You'll find patients at all stages of this disease (and other caregivers) who can help you navigate through the options you'll be presented with. I'm not sure if any have gone a strictly holistic route.

      I don't think god has it in for you personally. Good luck.

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      bcl
      Participant

      Hello again, I'm going to listen to Dian and accept the original post is for real, so if you are looking for compassion and understanding then maybe I can relate a little.

      You see, it feels like only yesterday when walking from my car to the store was so exhausting I had to turn around and go home, and this was after days (sometimes weeks) of gathering up the energy to venture out.  Fortunately, after I went on medical leave for the second time, my employer agreed to send me to a rehab treatment of my choice – I chose a Kinesiologist who worked with me in a pool setting. (I chose the Kinesiologist route in part because the doctor wanted to put me on nerve blockers and I refused.. so in a way, I also understand your reluctance to medicate.)

      I think this rehab was probably the hardest thing I have ever done; the pain at times was so extreme I felt I was tearing things inside. ( Plus I was constantly tired and had to climb stairs before I even got in the water.)  But I had read a lot and had begun to understand the pain was not real ( it sure felt real, but my muscles were not tearing, there was no knives cutting into to me..)  and I told myself over and over that the damage from this pain disorder (or yuppie flu as Rox  calls it  – lol) would only be real if I stopped moving. So I learned to watch the clock.. each minute that passed was celebrated and finally after 5 of them the pain lessened to the point I could keep going.

      I still pamper myself -work part time, see a physio weekly, sleep on a feather mattress with oodles of pillows and most importantly,  walk daily. ( If I am sore and overly tired I only walk a little but even to the end of the driveway and back is better than nothing.)  I mostly walk around the block as many times as I can, always with the knowledge that I can get home quickly if my body screams to loudly.  ( Kinda like being pregnant all over again, only then it was my bladder that screamed:)

      And yes, I am the melanoma patient (early stage, with a stubborn case of the jitters) and not the caregiver of a stage three melanoma patient. But when my husband had a heart attack a few years ago I was most grateful the doctors gave him mainstream treatment, as his illness was not my illness.. he needed medical intervention to save his life.  Three days before his heart attack we had a diesel spill in our basement,  I had a case of pneumonia (plus my yuppie flu) and was left to deal with everything. Our perfect teenager reacted badly to her fathers situation and at one point I found myself  in the hospital, pressing into hubbies' painful surgical site to stop a leg bleedout while the nurses franticly searched for a missing c-clamp, all the while wondering where my first born was incase her father did not make it. (She was not a bad kid, just a scared one.) 

      I'm telling you all this to show you we are stronger than we think.  Bad things happen, and often we feel we are drowning in it all ( believe me, I am an expert at that)  but our job is to swim to the surface and breathe, not only for ourselves, but for those who need us.  

      Try to break this down into smaller parts if you can.. and stop throwing blame around. Life is easier when we accept  changes and work with what we have. And look forward, not back.

      One last thing, I wonder if you have brought this up on a CFS/ CFD board?  You can't be the first person with this disorder who finds themselves faced with an ill spouse.  I found some fairly active boards when I did a quick search, will give you links if you like:)    all the best linda

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      bcl
      Participant

      Hello again, I'm going to listen to Dian and accept the original post is for real, so if you are looking for compassion and understanding then maybe I can relate a little.

      You see, it feels like only yesterday when walking from my car to the store was so exhausting I had to turn around and go home, and this was after days (sometimes weeks) of gathering up the energy to venture out.  Fortunately, after I went on medical leave for the second time, my employer agreed to send me to a rehab treatment of my choice – I chose a Kinesiologist who worked with me in a pool setting. (I chose the Kinesiologist route in part because the doctor wanted to put me on nerve blockers and I refused.. so in a way, I also understand your reluctance to medicate.)

      I think this rehab was probably the hardest thing I have ever done; the pain at times was so extreme I felt I was tearing things inside. ( Plus I was constantly tired and had to climb stairs before I even got in the water.)  But I had read a lot and had begun to understand the pain was not real ( it sure felt real, but my muscles were not tearing, there was no knives cutting into to me..)  and I told myself over and over that the damage from this pain disorder (or yuppie flu as Rox  calls it  – lol) would only be real if I stopped moving. So I learned to watch the clock.. each minute that passed was celebrated and finally after 5 of them the pain lessened to the point I could keep going.

      I still pamper myself -work part time, see a physio weekly, sleep on a feather mattress with oodles of pillows and most importantly,  walk daily. ( If I am sore and overly tired I only walk a little but even to the end of the driveway and back is better than nothing.)  I mostly walk around the block as many times as I can, always with the knowledge that I can get home quickly if my body screams to loudly.  ( Kinda like being pregnant all over again, only then it was my bladder that screamed:)

      And yes, I am the melanoma patient (early stage, with a stubborn case of the jitters) and not the caregiver of a stage three melanoma patient. But when my husband had a heart attack a few years ago I was most grateful the doctors gave him mainstream treatment, as his illness was not my illness.. he needed medical intervention to save his life.  Three days before his heart attack we had a diesel spill in our basement,  I had a case of pneumonia (plus my yuppie flu) and was left to deal with everything. Our perfect teenager reacted badly to her fathers situation and at one point I found myself  in the hospital, pressing into hubbies' painful surgical site to stop a leg bleedout while the nurses franticly searched for a missing c-clamp, all the while wondering where my first born was incase her father did not make it. (She was not a bad kid, just a scared one.) 

      I'm telling you all this to show you we are stronger than we think.  Bad things happen, and often we feel we are drowning in it all ( believe me, I am an expert at that)  but our job is to swim to the surface and breathe, not only for ourselves, but for those who need us.  

      Try to break this down into smaller parts if you can.. and stop throwing blame around. Life is easier when we accept  changes and work with what we have. And look forward, not back.

      One last thing, I wonder if you have brought this up on a CFS/ CFD board?  You can't be the first person with this disorder who finds themselves faced with an ill spouse.  I found some fairly active boards when I did a quick search, will give you links if you like:)    all the best linda

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      Jerry from Cape Cod
      Participant

      I, like all of you wonder about the authenticity of the post.  I'm also reminded of the strenght and compassion of those who populate this place.

      One thing concerns me about the post.  If you look closely the formating, font and spacing is a bit "off." It looks like a cut and paste something somebody canned and might be posting in multiple spots.  I hope not.

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      I, like all of you wonder about the authenticity of the post.  I'm also reminded of the strenght and compassion of those who populate this place.

      One thing concerns me about the post.  If you look closely the formating, font and spacing is a bit "off." It looks like a cut and paste something somebody canned and might be posting in multiple spots.  I hope not.

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      Hey All,  I think we've been had… I did a search with some of the content here's what I found on another site.

      Looks like someone wanted to play with us.

      ———————————————————————————————-

       

      It is 1984 and here I am, my little girls are 9 months and 3 years old.  It's Steve's night for bowling and I've just returned home from a 10-hour day at work.  Whew, this "reorganization" at work is a killer, barely allowing us time for grabbing a cup of soup to eat on-the-run.  I have a new supervisor and four other new associates I am training while I also learn how to handle new work brought in from California and Indiana.  No one knows at all what to do if I am not there to direct their every step.  I think I am "Super Mom".

      I have just celebrated my 30th birthday, then abruptly gotten the "flu".  I'd been more tired than I ever had been the last couple weeks, but I heard on the radio that if you got sick you wouldn't get better any sooner if you stayed home and rested.  I never imagined I had "mono which would never go away".  Since then I've always wondered what would have happened had I not heard that statement on the radio.  I was too sick, tired and stressed to go to the doctor so I assumed it was the "flu" and would go away within a couple weeks.

      I fed my daughters, turned on the TV. and put the baby to bed.  I returned to the living room and the television, forcing each step. “I can do this" I said to myself.  Feeling spent beyond words, I laid down next to my 3-year-old in front of the television.  I am so thankful Tammy, the 3-year-old, has played outside so she is "winding down".  I literally cannot even move.  I lie there until Steve returns from bowling at 9:30 when he carries me into bed.  I immediately fall into a deep sleep and wake up feeling very groggy and wiped out, but force myself to get up and go to work.     

      Well, it is now 2003 and I'm still waiting to get over this "flu".   I think of the fateful days when I thought I could "do it all".  Now, I can barely take care of myself.  In the first days of my illness I managed to hide it from everyone at work.  I knew something was terribly wrong, but thought I would one day just feel better.  It never happened.  

      Before I was sick I was one of the most "mellow" people I knew.  I could get along with almost anyone and always had a song in my heart.   Now, I became irritable, forgetful and impatient.  I didn't even recognize or like myself.

      At first, I just felt like I had mono all the time.  I felt I was still doing a pretty good job at work although at one point I asked for 1 ½ weeks off due to my health.  My daughters didn't understand when I told them I couldn't go to their field trips, watch their dance lessons or go to church.  I had always looked very much forward to going to church because it always helped me find the strength to go on.  I still tried to make sure they got there on Wednesday nights because it was so important to me that they learn about God.

      I remember one time my daughter was particularly insistent so I finally broke down and went along on a field trip.  We had to hike quite a ways and got lost.  By the end I could barely walk and I knew I would spend the next couple days in bed.  It was always about priorities.  My work always won out because we needed the money, but, work was hardly my priority.  

      When I was well, I loved my work, but, as it became the only activity in my life I resented it more and more.  My family and faith had always held the closest places in my heart and I had neglected both FOR YEARS.  How would my daughters grow up to understand my spirituality when I couldn't take them to church?   It broke my heart every day.  What was this monster that had such a control over everything in my life?

      As time went on, things at work started to spiral downward along with my health.  I went to the doctor and was told I was depressed.  I said, "Yes, I am depressed.  I am sick all the time."

      Finally, after about five years of illness, I was reading an article about a "yuppie flu" called Chronic Fatigue Syndrome (CFS).  The article mentioned that if you never felt well you may have it.  I knew in my heart I had the answer.

      I called my clinic and asked if there were any specialists in CFS.  I was given a name and made an appointment.  The doctor confirmed my suspicions; I had CFS, but there was no known treatment.  He asked me what level of activity I could maintain as compared with before ill.

      I couldn't remember how it felt not to be sick every day.  Then, the biggest toll was an emotional one.  I was given the option of taking antidepressants, but, I hated taking drugs so decided to forego them.   

      I heard about a documentary film about CFS that sounded interesting.  Perhaps I could use that to explain to my relatives what I was going through; it was aptly named "Living Hell".  But, I was still in somewhat of a denial and never watched it.  If I denied being ill, could I somehow "push myself" through the day?  I had never encountered anything before where I couldn't just work harder to surmount it. I didn't know those were going to soon be considered my "good" days.

      I started missing more and more days of work.  It was impossible to "will" myself through the workday anymore.  How would I keep my job and my sanity?  There was a shakeup at work.  In those days it was known as reorganization.   All of our work was totally changing.  At the same time, the pains in my body and memory loss seemed to overtake me.  I could no longer function at work.  It was as if, no longer afforded the luxury of doing the work I had known, my secret was out.  I couldn't learn the new work or keep up.

      I missed more and more work days and was referred to the Human Resources area.  My attendance was jeopardizing my job.  I went to the doctor who put me on disability.  Oh, what heaven to rest when I needed to and still manage to watch a softball game.  I could handle the pain enough to function that much.

      My doctor told me "most patients improve slightly over time."  Was I like "most patients"?  I knew deep in my heart my health was still deteriorating slowly, but, I wanted so badly to think I was going to improve.  How long could I continue on disability without losing my job?  I knew if I started to work part time that I would be waiving any disability benefits.  I prayed and hoped I was doing the right thing by working part time and arrangements were made.

      I was grateful to still have a steady income although I hated the work I was given.  I tried to make the best of it.  I worked four six-hour days, but, I knew it was still too much for me.  My husband wanted to start his own accounting firm for small businesses and we needed to keep benefits.  He was working part-time on getting his company started while also working temporary jobs.  So, I arranged to work the minimum 21 hours a week in order to keep our health insurance.

      Then, the unthinkable.  My 16-year-old daughter was pregnant.  She had joined a local Christian youth group.  Some of her "nice" friends that I knew were in it so it seemed a natural replacement for church.  I was unaware until later that it was for "at risk" kids.  I asked her why she wanted to be in it and she replied "to help the others".  I talked with a leader and was impressed by her beliefs and caring so I let Tammy remain in the group, asking her to make sure she didn't become the one influenced by them instead of the other way around.  

      I now knew it had been a mistake.  She had taken a boyfriend who had severe family problems and we had even let him stay in a tent in our backyard that summer.  Despite our talks with him about "respect" we instantly knew he was the father.  He had never been able to trust adults and convinced her to do the same.  

      I didn't choose to be sick, but now I wondered, "How can I tell my daughter I can't help her with a baby so she must place it for adoption?"  I had never prayed so hard.  To this day, I believe many small miracles occurred to get our family through this intact.  I now have a beautiful 5-year-old granddaughter who is with a wonderful family and is in kindergarten.

      However, I knew my "brain fog" and pain threatened my job more and more.  We heard the project our section was working on was being eliminated and so would our jobs.  Inside, I was relieved.  After 28 years of working, 17 of them while sick; I would be able to try to focus on healing myself.

      I did a lot of praying and was laid off in the first group.  I had made the cutoff of "early retirement" age by one month and would be able to keep my health insurance.  I also received a much-needed severance payment.  My prayers were answered.

      That was in 2001 and we are still focusing on my trying to manage my illness and Steve getting his business built.  It does well enough to support us only during tax season.  He works a part- time job during the summer to help make ends meet.  I feel I am no longer able to work and am pursuing social security disability benefits which I know I deserve.  To go to court and convince the judges of this will be an arduous task I am told, but, a necessary one.  

      Although I am in constant pain and can go out only infrequently, I have found reasons to be thankful.  My computer serves as a lifeline to the rest of the world.  I am still very grateful for my faith, family and friends.  In fact, I have a new "family" of friends via my support group.

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      Jerry from Cape Cod
      Participant

      Hey All,  I think we've been had… I did a search with some of the content here's what I found on another site.

      Looks like someone wanted to play with us.

      ———————————————————————————————-

       

      It is 1984 and here I am, my little girls are 9 months and 3 years old.  It's Steve's night for bowling and I've just returned home from a 10-hour day at work.  Whew, this "reorganization" at work is a killer, barely allowing us time for grabbing a cup of soup to eat on-the-run.  I have a new supervisor and four other new associates I am training while I also learn how to handle new work brought in from California and Indiana.  No one knows at all what to do if I am not there to direct their every step.  I think I am "Super Mom".

      I have just celebrated my 30th birthday, then abruptly gotten the "flu".  I'd been more tired than I ever had been the last couple weeks, but I heard on the radio that if you got sick you wouldn't get better any sooner if you stayed home and rested.  I never imagined I had "mono which would never go away".  Since then I've always wondered what would have happened had I not heard that statement on the radio.  I was too sick, tired and stressed to go to the doctor so I assumed it was the "flu" and would go away within a couple weeks.

      I fed my daughters, turned on the TV. and put the baby to bed.  I returned to the living room and the television, forcing each step. “I can do this" I said to myself.  Feeling spent beyond words, I laid down next to my 3-year-old in front of the television.  I am so thankful Tammy, the 3-year-old, has played outside so she is "winding down".  I literally cannot even move.  I lie there until Steve returns from bowling at 9:30 when he carries me into bed.  I immediately fall into a deep sleep and wake up feeling very groggy and wiped out, but force myself to get up and go to work.     

      Well, it is now 2003 and I'm still waiting to get over this "flu".   I think of the fateful days when I thought I could "do it all".  Now, I can barely take care of myself.  In the first days of my illness I managed to hide it from everyone at work.  I knew something was terribly wrong, but thought I would one day just feel better.  It never happened.  

      Before I was sick I was one of the most "mellow" people I knew.  I could get along with almost anyone and always had a song in my heart.   Now, I became irritable, forgetful and impatient.  I didn't even recognize or like myself.

      At first, I just felt like I had mono all the time.  I felt I was still doing a pretty good job at work although at one point I asked for 1 ½ weeks off due to my health.  My daughters didn't understand when I told them I couldn't go to their field trips, watch their dance lessons or go to church.  I had always looked very much forward to going to church because it always helped me find the strength to go on.  I still tried to make sure they got there on Wednesday nights because it was so important to me that they learn about God.

      I remember one time my daughter was particularly insistent so I finally broke down and went along on a field trip.  We had to hike quite a ways and got lost.  By the end I could barely walk and I knew I would spend the next couple days in bed.  It was always about priorities.  My work always won out because we needed the money, but, work was hardly my priority.  

      When I was well, I loved my work, but, as it became the only activity in my life I resented it more and more.  My family and faith had always held the closest places in my heart and I had neglected both FOR YEARS.  How would my daughters grow up to understand my spirituality when I couldn't take them to church?   It broke my heart every day.  What was this monster that had such a control over everything in my life?

      As time went on, things at work started to spiral downward along with my health.  I went to the doctor and was told I was depressed.  I said, "Yes, I am depressed.  I am sick all the time."

      Finally, after about five years of illness, I was reading an article about a "yuppie flu" called Chronic Fatigue Syndrome (CFS).  The article mentioned that if you never felt well you may have it.  I knew in my heart I had the answer.

      I called my clinic and asked if there were any specialists in CFS.  I was given a name and made an appointment.  The doctor confirmed my suspicions; I had CFS, but there was no known treatment.  He asked me what level of activity I could maintain as compared with before ill.

      I couldn't remember how it felt not to be sick every day.  Then, the biggest toll was an emotional one.  I was given the option of taking antidepressants, but, I hated taking drugs so decided to forego them.   

      I heard about a documentary film about CFS that sounded interesting.  Perhaps I could use that to explain to my relatives what I was going through; it was aptly named "Living Hell".  But, I was still in somewhat of a denial and never watched it.  If I denied being ill, could I somehow "push myself" through the day?  I had never encountered anything before where I couldn't just work harder to surmount it. I didn't know those were going to soon be considered my "good" days.

      I started missing more and more days of work.  It was impossible to "will" myself through the workday anymore.  How would I keep my job and my sanity?  There was a shakeup at work.  In those days it was known as reorganization.   All of our work was totally changing.  At the same time, the pains in my body and memory loss seemed to overtake me.  I could no longer function at work.  It was as if, no longer afforded the luxury of doing the work I had known, my secret was out.  I couldn't learn the new work or keep up.

      I missed more and more work days and was referred to the Human Resources area.  My attendance was jeopardizing my job.  I went to the doctor who put me on disability.  Oh, what heaven to rest when I needed to and still manage to watch a softball game.  I could handle the pain enough to function that much.

      My doctor told me "most patients improve slightly over time."  Was I like "most patients"?  I knew deep in my heart my health was still deteriorating slowly, but, I wanted so badly to think I was going to improve.  How long could I continue on disability without losing my job?  I knew if I started to work part time that I would be waiving any disability benefits.  I prayed and hoped I was doing the right thing by working part time and arrangements were made.

      I was grateful to still have a steady income although I hated the work I was given.  I tried to make the best of it.  I worked four six-hour days, but, I knew it was still too much for me.  My husband wanted to start his own accounting firm for small businesses and we needed to keep benefits.  He was working part-time on getting his company started while also working temporary jobs.  So, I arranged to work the minimum 21 hours a week in order to keep our health insurance.

      Then, the unthinkable.  My 16-year-old daughter was pregnant.  She had joined a local Christian youth group.  Some of her "nice" friends that I knew were in it so it seemed a natural replacement for church.  I was unaware until later that it was for "at risk" kids.  I asked her why she wanted to be in it and she replied "to help the others".  I talked with a leader and was impressed by her beliefs and caring so I let Tammy remain in the group, asking her to make sure she didn't become the one influenced by them instead of the other way around.  

      I now knew it had been a mistake.  She had taken a boyfriend who had severe family problems and we had even let him stay in a tent in our backyard that summer.  Despite our talks with him about "respect" we instantly knew he was the father.  He had never been able to trust adults and convinced her to do the same.  

      I didn't choose to be sick, but now I wondered, "How can I tell my daughter I can't help her with a baby so she must place it for adoption?"  I had never prayed so hard.  To this day, I believe many small miracles occurred to get our family through this intact.  I now have a beautiful 5-year-old granddaughter who is with a wonderful family and is in kindergarten.

      However, I knew my "brain fog" and pain threatened my job more and more.  We heard the project our section was working on was being eliminated and so would our jobs.  Inside, I was relieved.  After 28 years of working, 17 of them while sick; I would be able to try to focus on healing myself.

      I did a lot of praying and was laid off in the first group.  I had made the cutoff of "early retirement" age by one month and would be able to keep my health insurance.  I also received a much-needed severance payment.  My prayers were answered.

      That was in 2001 and we are still focusing on my trying to manage my illness and Steve getting his business built.  It does well enough to support us only during tax season.  He works a part- time job during the summer to help make ends meet.  I feel I am no longer able to work and am pursuing social security disability benefits which I know I deserve.  To go to court and convince the judges of this will be an arduous task I am told, but, a necessary one.  

      Although I am in constant pain and can go out only infrequently, I have found reasons to be thankful.  My computer serves as a lifeline to the rest of the world.  I am still very grateful for my faith, family and friends.  In fact, I have a new "family" of friends via my support group.

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        StanN
        Participant

        Man ain't you the net sleuth,nice work.

        I also had my doubts for your stated reasons.A long time ago there was someone else on the MPIP that pretended to be a patient..so yea it happens.Illness knows no bounds I guess ,mental or emotionial included..

        But  hey again  nice net surffing

         StanN

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        StanN
        Participant

        Man ain't you the net sleuth,nice work.

        I also had my doubts for your stated reasons.A long time ago there was someone else on the MPIP that pretended to be a patient..so yea it happens.Illness knows no bounds I guess ,mental or emotionial included..

        But  hey again  nice net surffing

         StanN

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        dian in spokane
        Participant

        Guys….just because someone writes a post on their Word program and drops it on more than one board doesn't mean it's untrue..just that they are trying to hit many places.

        Hopefully jerry found this on a CFS board..which is where this person should be posting

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        dian in spokane
        Participant

        Guys….just because someone writes a post on their Word program and drops it on more than one board doesn't mean it's untrue..just that they are trying to hit many places.

        Hopefully jerry found this on a CFS board..which is where this person should be posting

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        Jerry from Cape Cod
        Participant

        Dian,

        This was a post on a "survivors" board with many other CFS stories.  It's an older post there and not posted anon. 

        I'm just a bit wary.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Dian,

        This was a post on a "survivors" board with many other CFS stories.  It's an older post there and not posted anon. 

        I'm just a bit wary.

        Jerry from Cape Cod

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        bcl
        Participant

        I agree Dian, I found the site and think it could still be legit. Just wish the poster would respond after I spent over an hour spilling my guts (when I should have been out doing some of that exercising I boasted about lol ) Oh well, now I see how far I've come baby:)

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        bcl
        Participant

        I agree Dian, I found the site and think it could still be legit. Just wish the poster would respond after I spent over an hour spilling my guts (when I should have been out doing some of that exercising I boasted about lol ) Oh well, now I see how far I've come baby:)

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        Bonnie Lea
        Participant

        well Jerry, perhaps avoiding Lob-i-stirs as much as you do, has given you great sherlock holmes brains.  And I bet also the Doctor Watson, co joined.

         

        great job, and thanks it relieves me in a funny way as I was thinking of all the caregivers we all know just from here, and that person was sooooo far out of the cabbage patch.

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        Bonnie Lea
        Participant

        well Jerry, perhaps avoiding Lob-i-stirs as much as you do, has given you great sherlock holmes brains.  And I bet also the Doctor Watson, co joined.

         

        great job, and thanks it relieves me in a funny way as I was thinking of all the caregivers we all know just from here, and that person was sooooo far out of the cabbage patch.

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        Jerry from Cape Cod
        Participant

        Bonnie Lea,

        I'm rolling on the floor laughing so hard…. bless you.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Bonnie Lea,

        I'm rolling on the floor laughing so hard…. bless you.

        Jerry from Cape Cod

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      Eehgads
      Participant

      Sounds terrible. I do believe that cottage cheese and flakseed will help.

      Michele

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      Eehgads
      Participant

      Sounds terrible. I do believe that cottage cheese and flakseed will help.

      Michele

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        Eehgads
        Participant

        Oh, I needed to turn on the light and put on my glasses. I suggest trying cottage cheese and flaxseed, but if you can find flakseed try that also.

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        Eehgads
        Participant

        Oh, I needed to turn on the light and put on my glasses. I suggest trying cottage cheese and flaxseed, but if you can find flakseed try that also.

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