Missizzy has an exciting update

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Sep 12, 2008.

  1. Missizzy

    Missizzy New Member

    Hi All--I've been trying to post this for at least a week. I've been so torn. I honestly am bemused and worried about how this information will be greeted. Most of you know that I lived a VERY full and vibrant life until June 2004 when the rug was pulled out from beneath me. I have been pretty much bedbound for the last two years--only leaving home for doctors' appointments and the occasional sublime visit to a bookstore. I've missed so much but tried my darnedest not to let this DD steal my spirit. My husband and family have stood by me through the whole ordeal with support and love. My children have had to make many sacrifices as I am not the Momma they came to expect.

    My husband and I came to the sad conclusion that the retirement we were looking forward to this next year (when our youngest leaves) is not going to happen. We realized that travel and dinners out and adventure were just not in the cards for us. We started soul searching and tried to think of a way that we could add meaning to our lives given my severe limitations.

    I've mentioned several times that 10 of our 13 children came to us through adoption and many of our kids have mental and medical challenges. We've enjoyed our parenting adventure immensely but just have felt lost and kind of bored for the past year or so.

    My husband decided to make the exciting choice to become certified to provide long term foster care for developmentally disabled teens. We have a special place in our heart for these children and quite a lot of experience in working with them and loving them. Well, things started rolling faster than we could have ever imagined. I NEVER made a secret to anyone about my DD and the fact that my husband would be providing most of the care. My doctor fully supported me in my decision. I felt as if I could still "Mommy" quite well from bed and I am a heck of an organizer--paperwork, schedules, etc.

    In less than a month, we were certified and made the next exciting decision--to move back to our original and huge house where we raised our 13. My husband left me for two weeks to visit our son in France and to "rest up" for the roller-coaster ride ahead. Literally the day he got off the plane, he started moving the family across town to the Big House. Our oldest kids had mixed reactions. Some were very supportive and helpful, others are appalled and worried--all think we are nuts. We don't disagree.

    As the move was underway, I went about my regular "little" life in bed fielding phone calls and directing furniture placement. On the second day of the move, we got a call about a young lady needing a home. The next day, we got another call--this time a young boy. Two children--a 15 year old and a 17 year old--both with myriad challenges. Both so needful. Of course, we said yes.

    Here's where things get strange. I have no idea how to explain what happened next. I have never lost my faith that I could get better. I've never given up hope. I've celebrated every single hour that I have had energy and good health for the past four years but there haven't been many. I've researched and reached out. I've done everything asked by doctors and tried all sorts of approaches. I've had every test known to man. But nothing at all worked to give me back my strength, my balance, my thinking ability. It didn't matter how hard I tried or prayed or wished. And then we got the referral for these two children.

    I got out of bed. At first, it was just to do little things. The little things started growing and growing fast. I started helping move. I met the children (and fell in love). I walked into a kitchen I hadn't been in for four years and turned on the stove. I walked to end of the driveway. I walked up and down the stairs and then did it again and again--with more and more stamina. I got up in the morning and GOT OUT OF BED and didn't get back in until 10 pm.

    We brought the children home--this makes 6 teens at home now. Our new children are dear and innocent and need my help and love desperately. I dress them, manage their meds, make umpteen phone calls every day for them, laugh at their antics, praise their many valiant attempts at everyday tasks, have sat through two hour meetings two or three times each week, read to them, tuck them in, redirect them, process behavior with them, smile and do it all again. I've put a three course dinner on the table at 6 pm on the dot and have done at least four loads of laundry every day. Then, I sit out on our balcony and enjoy wine with my husband and marvel at what is going on. I've gotten used to the older children stopping and staring at me wondering what on earth could be going on. The phone lines are abuzz with my grown children sharing this amazing story and checking up on me.

    I've gotten tired but never exhausted. I have tremored only once and that was when my husband tried to take me to lunch. My relapse seems to be site-specific. I haven't had zaps, tinnitus, dizziness, falls, ataxia, tingles, numbness. Maybe I'm too busy to notice.

    As I write this, I'm sitting at the kitchen table. The kitchen is clean. Dinner was tasty. I fed all seven dogs myself. My two newest children are reading quietly near me. My husband is nearby sneaking looks at me every once in a while. He's so so worried this is all a dream. I know that I'm just reveling in every second.

    I know this could, possibly will, end. I know what it feels like to be almost totally helpless for years on end. I think I'm humble enough to accept that life again if I must. But for now, I'm a little in shock. I'm sure there will be lots of theories about what has happened to me. I have many myself. I know it wasn't any conventional medicine or alternative protocol as I have none. I only take two Klonopin at bedtime--that's all. I take no supplements and have not changed my diet in any way. My life's stressors have not changed (unless you count the new children!!). It's both a beautiful mystery and an awesome miracle.

    I've pondered posting for several days. I don't know what everyone will think. Heck, I don't know what to think. I feel as if I need to reinvent myself. I feel as if I need to pinch myself each morning. Painpaingoaway is a dear friend of mine and she encouraged me to post. She urged me to share my joy with all of you. She has stuck with me through thick and thin and is sharing my joy. I have to tell you all that I'm slightly embarrassed and very confused. I also have to tell you that I'm having a ball and I think I'll have another glass of wine. I care about all of you so much and cherish the times you've buoyed me up, made me laugh at your escapades, made me nod in recognition of some pain or new symptom, and made me cry with admiration of your strength. I send out all my love to you tonight truly feeling that those of you who are suffering must keep hope alive. I did. Aren't the body and mind curious and marvelously complex? You just never know what tomorrow might bring.

    Tomorrow night, our public radio station plays my favorite "Gourmet Oldies" show--music of the 20's through the 50's. I plan to get up and dance.

    With joyful hugs,

  2. jenn_c

    jenn_c New Member

    goose bumps. You are not crazy and you never have to worry about posting anything on here. It is a miracle. Ihope it lasts for years tocome. You are a beautiful lady and I pray for your new found health to last. Thank you for sharing your wonderful storry.

    Good luck.Jenn
  3. momof4kids68

    momof4kids68 New Member

    I've read your post a few times now. How wonderful of you & your husband to give so much to children in need. I know that the other side of the coin is how much you get back from those kids.

    My husband & I have 4 children. The oldest 2 are from my first marriage and then youngest 2 are ours but my husband has loved them all the same from the start. Now that they are getting older we've talked a few times about becoming foster parents. I'm not sure what course our lives will take but I hope that we will be giving back some of the gifts we have received.

    The mind & body are most definitely complex. Enjoy this terrific time of rejuvenation. I can feel the joy in your voice as I read your words and I'm wishing you all the best.

    Take care!
  4. Missizzy

    Missizzy New Member

    Good Morning--I shouldn't have worried. All your responses have been so kind. Thank you. I need to add an addendum, though. I read my post aloud to my husband last night and he said that I had misrepresented his "position". He laughed and said he "doesn't believe what he's seeing--plain and simple". LOL I have no idea what that means. Looks to me like I'm vertical and stuff is getting done and for once, he's not doing it all. The dear man has done an incredible amount of work over the last four years--taking care of our children, the house, our construction company, our rental properties, dealing with three adult sons with bipolar, mounting a three month volunteer excursion to Biloxi, MS after Katrina, and lovingly caring for me. The man needs a break. He's not the blithering optimist that I am, though.

    Grammy--you hit the nail on the head with your comments. That's exactly what happened. If I would have known that the acceptance of some more challenging children would have changed the chemistry in my brain or body, I would have done this several years ago. And yes, all the children help. All our kids are expected to do their part, even the one with multiple challenges. I mentioned the things I've been doing but each of them continue to do very helpful chores as well as help their Dad with construction. The newest children have been told about my illness and know that I need to rest more than usual. They've seen me in my wheelchair (and pushed it for me very carefully). I have plans to schedule my "up" hours for when they are home and to rest (if need be) while they are in school. I think the biggest challenge is figuring out who I am right now as I'd already made the transition to "chronically ill person". I'm sure that adjustment, either transitory or permanent, will be tough.

    And yes, we have six teens as well as seven dogs at home. To us, this is really not excessive. We've had ten teens at a time and eleven dogs. We're used to living kind of "big". The dogs are mostly rescues with disabilities and were my saving grace during the years of my bedrest. They kept me going. They are all used to spending the whole day cuddled on my bed. They are more than a little confused to see me up and moving.

    So, I'm strong again today. The saga continues. I'd love to hear from others who've had a remission--what precipitated it, how long did it last? I'm fascinated by the mind/body connection but feel the jury is still out. I've had diagnoses of MS, spinocerebellar ataxia, and permanent vestibular damage. Those don't just "up and go away". So, what is going on?

    Hugs to all,

  5. gapsych

    gapsych New Member


    Enjoy your new founed health, no matter how long it lasts.

    Take care.
  6. simonedb

    simonedb Member

    great for you missizzy!
    maybe its along the lines of ashtok gupta's amygdala retraining, perhaps you did your own version of that with the new challenges and its what you needed, could have been just a bad post viral loop or something.

    Is there any treatment, supplements, meds that you have been taking that you think could possibly tie in, maybe they were having a healing effect and it took awhile? Curious to know.

    good luck!
  7. whoachief

    whoachief New Member

    AWESOME! I am thrilled for you!! My husband & I are foster parents as well so I completely understand what you are going thru. Right now at home we have an 18 year old, two 8 year olds, two 5 year olds, a 3 year old & a 2 year old. No dogs! LOL It's a rollercoaster ride for sure! Enjoy your time while you are feeling well as you are right that we never know when it's going to end so enjoy the heck out of it while you can. Give your new teens an extra hug from me - you are an angel!!
  8. victoria

    victoria New Member

    I am so happy for you, being able to actually be doing something so wonderful for these kids! That has to be biochemically good, for you too, to be able to do something that gives back to you spiritually in so many ways!

    Do you think the change of environment might've helped in some way? Just thinking about possibilities of mold or other problems in the other house (you did say you moved, right?).

    All the best, to all of you!

  9. Missizzy

    Missizzy New Member

    Whoachief--I had no idea you had such a big group. You DO know what life is like at my house (but add in seven yippy poodles and Chihuahuas!!) and 6 grandbabies. I am enjoying my day in the sun. Right now I'm downstairs teaching one of the kids about depression era food issues. My brain would not have been able to do that a month ago.

    A clarification about the move. We lived in the Big House (our kids' name for this house up in the hills overlooking Ashland for 13 years. This is where my illness hit--in fact, in the same bedroom I'm sleeping in now. Ten months ago we made the decision to move to one of our smaller homes across town. My health really didn't change with that move at all. Many, including myself, had wondered if something was going on up here as there have been numerous people in our neighborhood who have developed strange illnesses. But, no change, really.

    My Eureka Day occurred two days into the move while we were still sleeping at the smaller house but knew the kids were coming soon. There was a great deal of pressure to move fast and get everything done. The state had these two children who needed to move and they helped us immensely by rushing everything. No doubt, adrenaline played some sort of a part. But, adrenaline doesn't last this long!!

    As to the comment by simondb, I will have to research that as I'm unfamiliar with the teachings. It certainly sounds plausible. I know that I've done a LOT of mind/body work on my own over the last four years along with lots of visualization, prayer, and keeping myself positive and optimistic. I will look into the retraining approach.

    Thank you all for your support. This feels so darned great!! How I wish I could send you all a pretty package of this energy.

  10. Janalynn

    Janalynn New Member

    I'm so glad you decided to post your wonderful news. It makes me a bit sad that you would ponder whether or not you should post it.

    It doesn't matter why "it" happened. I truly believe that you are so giving, that you have been given the strength to continue to give. Sometimes there are no scientific answers to explain what is going on, or why things happen.

    All I can say is, get up and dance girl! Enjoy your life - you certainly deserve it. Thank you SO much for sharing a wonderful story of a family who has been so unselfish in their love for others.

    Just as sometimes we don't know why our (my) legs hurt like heck one day, there is no reason to believe that the next I may be questioning why they don't hurt at all. I really believe that way.

    Bless you and your husband for all that you've done!
    Keep posting PLEASE! Don't you hesitate for one single moment!
    I, for one, love hearing positive stories.

    I'm incredibly happy for you - no words to describe.

  11. SpecialK82

    SpecialK82 New Member

    What an incredible story all around! Congratulations to your new found strength. I am so happy for you and your family. Thank you for giving us all some inspiration.

    Enjoy every minute of your new life, I wish that this continues for years!!

    Please continue to keep us posted on your progress (if you're not too busy :)

    What a celebration!


  12. lrning2cope

    lrning2cope New Member

    Your news is just wonderful .I am not sure what your spiritual beliefs are , but it just seems that the Lord decided that from your love and willingness to help these kids , He would give you the gift of being totally 'there' for them .

    Your posts have always touched me. Your husbands gentle care of you on your journey to say good-bye to your dad was showing what kind of love goes around in your family and life, as well as your love for those who need it in this world - both human kids and furry -fourlegged kids.

    God Bless you , Missizzy ! Do an extra dance for all of us !

    In His Grace,
  13. vannafeelbettr

    vannafeelbettr New Member

    What a wonderful post!! I'm so glad you wrote it. It's what we all want to see. I'm so glad this dream came true for you, as you have so unselfishly made the dreams of those needy children come true.

    God Bless you and keep on blessing you and your beautiful family. I can feel the love through the words on the screen!!

  14. robin1667

    robin1667 New Member

    And your family.You truly are an amazing woman with all you do for the children.Enjoy your good health.God Bless you and your family! Hugs, Robin
  15. Missizzy

    Missizzy New Member

    Holly and everyone else--I don't post much about my spiritual beliefs but I have deep faith. I do believe in Grace. It was also the name of my baby granddaughter who died last year. The word is very meaningful to me. I know something is "afoot" here.

    I guess what I want to say is that I do believe in miracles but who thinks that one could happen in their own life? Don't most of us think that they only occur on mountainsides to poor peasant girls (not counting the births of our precious children and rainbows and puppies)? I'm not meaning to be glib but I have such a questing mind, I have to doubt somewhat. I did go to Chimayo in NM to pray and to gather some holy dirt. Even with my strong beliefs, though, I'm questioning the physical and medical explanations for this burst of energy. Hmm. I read that back and what a doubter I am. If this is a miraculous gift, I think I probably need to just move forward in that grace and enjoy myself. I've never been one to leave good enough alone, though. I've got to dissect it. That's just me. I never prayed to get well. I only prayed to find the strength to deal with my illness.

    Someone asked if I had done anything different that might have had a cumulative affect. No, not really. Due to my loving family, I have had the luxury of listening to my body and not pushing myself (other than a few isolated incidents) for the last four years. All my medication trials, therapies, etc. stopped after I returned from the Mayo Clinic over a year ago. They had no clue what was wrong with me but gave me no hope of improving either. I decided to embrace the life I had and learn to live with the limitations. In other words, I gave up fighting my illness. I've eaten a healthy diet, maintained my relationships with loved ones, kept my mind busy--other than that, nothing unique.

    I have a very hard time believing (there's that "B" word again) that plain old adrenaline could kick start my health. I don't just have 100 times more stamina but I've noticed that I'm quickly coming up to close to normal speed. I started out last week with very simple meals and struggled with that. Well, in just a week I've started being more creative in cooking, multi-tasking, stirring and talking at the same time. I also see change in my gait and purposeful movement. My motor planning is close to normal. I'm not waivering and ataxic. I'm whipping through the house again.

    Does anyone know what the experts (hah!!) say about sudden remissions? I find it interesting that my onset was sudden also--just as sudden as this. I'm also one of those who has not had one single regular illness in the last four years. Maybe I'll really be able to accept my good fortune if I come down with a nasty cold or flu bug (please no!!).

    As my husband just told me--it's like falling down the rabbit hole. One just does not know what to think. But I'm still gonna dance like there's no tomorrow.

    Happy hugs,

  16. moreinfoplease

    moreinfoplease New Member

    I am very happy for you, and glad you shared your story

    At the same time, I am saddened when it occurs to me how some others--who don't get these illnesses--would respond.

    They would conclude that you were never really sick at all, just needed to get up, get motivated, etc, etc.

    Let me clarify, I am not thinking or saying that at all, and also I realize it isn't even logical, since that is what you were doing before you became ill.

    Nonetheless, I can just hear it now. If we all just got out of bed, helped others, stayed busy, enjoyed life, thought positive, we would enjoy similar recoveries. I know a couple of my family members who would say just that.

    But them aside, I am very happy for you and facinated at your experience--the sudden illness and sudden recovery.

    Thank you for sharing. I hope you continue to feel well.
  17. luvdogs

    luvdogs New Member

    You should never feel hesitant at sharing anything joyful. May your burst of energy turn into a shining light that guides you through your life. More later.
  18. Missizzy

    Missizzy New Member

    You are so, so right Moreinfoplease!! Those are the thoughts that went through my head. I tried hard to be objective and validate all the 50 months of absolute misery but I found myself doubting my own sanity. Isn't that sad?

    I've had two other remissions like this (although much shorter). One was when our family decided to respond to Hurricane Katrina and I worked my bunnies off for 6 days straight manning the phone lines, donations, media, packing, and general chaos involved with that. The second was when my granddaughter, Riley Grace, died a few hours after her birth. I went to the hospital, held that baby for hours, literally held up my grieving children, and managed to plan and speak at her lovely life celebration. Both those times, however, I collapsed for months afterward. This feels different. It's not quite as rush-y. Does that make sense? It somehow feels more organically based.

    We all know that if motivation and gumption and positive thinking could do it, we'd be running a marathon or an oil company. But others can't grasp that. If I would have ever "played" sick, my family would have trounced me!! I've HATED being so helpless and dependent. But I have learned a lot. I've learned to celebrate small things and to be humble enough to accept others' help. I've also learned not to judge or to define others for experiencing health issues I don't understand. I've learned to live a quiet life. It's been terribly hard. I imagine I will re-visit those blessings at some time. And I know you'll all be there for me when I do.


  19. sleepyinlalaland

    sleepyinlalaland New Member

    you are a TREASURE.

    Since your debut into these boards, it has been puzzling to all as to exactly what has beset you (health-wise). Your posts have ALWAYS been so absolutely candid and refreshing...I never doubted your experience at all.

    I now truly do not doubt or question your reprieve (and LONG may it live!).

    Yours has been a most compelling story to follow and I am so happy for your current condition.

    I also appreciate that...whatever the reason for your years of greatly compromised function...I sense that you are still so compassionate to others who have not been able to attain that reprieve, or possibly HEALING.

    Bless you, bless you. I SO admire people who are able to help young people in this terribly challenging world.

    God bless you, may your energy continue to carry you. I can sense that even if it wains, you (and your family) will find a way to continue to make such a difference for some children in need.

    I am in awe, and I wish you continued good health! (and maybe a few miracles as needed).
    [This Message was Edited on 09/14/2008]
  20. joanierav

    joanierav Member

    i cried when i read your story, and all the beautiful responses. just beautiful, beautiful people here, who are just plain happy for you. your story made my day. i wish you would write your story and submit it to a magazine. we need positive stories like that , in a world that is so full of sorrow and stress. missizzy i think i may have spoken to you in the chat yrs ago, unless it was some one with a similar name. i will pray that your miracle will continue to bring you abundant good health. i myself am celebrating in your new found joy. much love joanierav