Dealing with CIDP, with Christmas coming–a WONDERFUL Christmas story

    • Anonymous
      December 22, 2008 at 12:24 pm

      Hello all,
      Christmas is my favorite time of the year! All the decorations, the special foods, (a Sicilian-Cuisine Christmas), the Christmas tree, all the presents, the music, and all celebrating with good friends and family.
      But how will I accomplish all this, while dealing with this awful CIDP, and the great fatigue. I am one of the 5% where the normal protocol of treatments for CIDP hasn’t worked. I am on the last-step of high-dose chemotherapy in the fight to keep me alive, while the CIDP has ravaged my body hitting my autonomic system, knocking off the nerves controlling each organ. I was told two summers ago, I had about two years left to live…I am on borrowed time now. My aim is to make it to August 2009, so at least I will be able to leave some life insurance money to my loved one. But the great weakness is now setting in. My doctors are waiting for me to get a bad flu, as they know I will not be able to fight it off. There are days where I am confined to my bed all day long as I am too weak to make it out of bed. I was on the high-dose chemotherapy for 14 months, and at the moment my Neuro and Rheumo docs had to stop it for the winter’s three months, to give my bone marrow a break.
      My family and close friends have been coming for visits, and they know this may be my last Christmas…
      So, how did I get to accomplish my favorite time of the year? I had to plan it all out. I started buying Christmas presents in July via the internet. I bought a few gifts each month, and finished all my shopping including gift wrap by November. The beginning of November, I started the MAJOR CLEANING of the house. In my twenties, thirties, and forties, I did much travelling around the world, and have amassed art pieces and artwork. We have three etageres full of them, a HUGE china closet/hutch, a large wine cabinet from asia, and about 40 pieces of art on the walls. I knew I had to accomplish alot of cleaning, with much company coming in over the holidays. So, I ordered 6 rolls of cotton with sparkles in it, (it is used for Christmas light-lit villages to make it look like snow). So, each day I would wrap a few presents, then clean one-half of each etagere and the art pieces. (I do a thorough cleaning and waxing, from top to bottom.) My energy would then be depleted, and I would have to sleep the rest of the day. But each day, I would do this–knowing I would get it done slowly but surely. As I cleaned each shelf, I would measure and cut out of the cotton, to cover the shelf completely, (I was doing this so that at Christmastime, I would not have to worry about cleaning or dusting). When each etagere was done, it looked so nice and clean and sparkly with the “snow” on each shelf. I finally got done near the end of November. Then we had to pull out all the Christmas decorations, of which there were TONS of it. As we travelled though the years, we would purchase a Christmas ornament or decoration from the country we were in, so we have amassed four rolling chest-of-drawers full of decorations and ornaments, plus boxes of wreaths, light-lit villages, etc.
      Again, I would do it the same way–wrap a few presents in the morning, then clean and put out a few Christmas decorations, then hit the bed for rest.
      By mid-December, we had it all done, except for the tree, which we got it on Dec. 12. So, we had one week to get it decorated, as the first of close friends and family were flying in on 19DEC. Same thing here–get the stockings done, ( I had twelve to do–iron on the names the fill each with candies and stocking stuffers), a little each morning as I had finished the wrapping of the presents, then decorate the tree, then hit the bed for rest.
      WOW-I cannot believe how well this was going with this routine, and how beautiful the house was looking. We got the tree done in about five days.
      Our friends flew in on the 19DEC, and we have been having a fantastic time.
      My life-partner does the cooking for Christmas day, and started the Sicilian delicacies and sauce and meats on 21DEC. I take care of Christmas eve, which by Sicilian/Italian tradition is all seafood, (it is supposed to be no meat Christmas eve, and you are supposed to have 12 different kinds of seafood served, one for each apostle). Seafood cannot be cooked ahead of time, so I know I will be able to do this by getting plenty of rest the day before and the morning of. The shrimp platter is already ordered by one store, and the Crab Louie is a quick thing to do by making the crab salad then putting onto the lemon juice-covered avocados. And the bacon-wrapped large sea scallops are another quick thing to do–just clean the scallops and wrap with the bacon strips. The other nine seafood items go into a crushed tomato juice-like sauce, with onions and garlic, as the seafood will actually cook in it–I have clams, mussels, shrimp, langostinos, bay scallops, sea scallops, different fish, and lobster tails. All a simple process of cleaning the seafood, then throughing into the sauce. Then just cook the linguine while the guests are here as well as the bacon-wrapped scallops. And all will be ready for the Christmas eve dinner. Of course, we have been playing Christmas music for the past few days, as each year we buy two artist’s music CD’s, and now have about 30 different Christmas CD’s. I had placed all the wrapped presents on top of all the etageres, china closet, and wine cabinet, so our house is FILLED with Christmas, from top to bottom, with Christmas music playing, and the smells of Christmas Day dinner filling the house…it’s WONDERFUL that everything is done, and I am able to enjoy everything and good friends and family. Alot of them cannot believe that we have everything done and we can enjoy each other’s company. Two friends who had flown in from the east coast, thought they would be spending their time with us getting the tree up and helping us decorate…but instead we are ALL being able to relax and enjoy. I have to treat each Christmas as if it were my last, and this one was extra special, since I was able to accomplish everything I wanted to get done. Today, I am getting the diningroom tables done–picking out and ironing the tablecloth and napkins, and washing the Christmas dishes. I already have the favors done and wrapped for each place, and this year purchased from Lenox, little china wrapped presents with each person’s name on the china ribbon as name place holders. It will be beautiful table. We had ordered the centerpiece weeks ago, and picked it up on Saturday–beautiful white and red roses surrounded by fir sprigs, with a candle in the middle. The only thing I’m not looking forward to today, is cleaning the silver…but I know I’ll get it done, as I am excited now for the big eve/day.
      I do hope and wish all of you a fantastic holiday, and hope all of you can get through the holidays like I have, and have a great time. All it takes is doing a little each day, and you can accomplish much, if planned ahead. And I can put aside thinking about this dang disease and enjoy.
      Merry Christmas all,

    • Anonymous
      December 22, 2008 at 12:48 pm

      I must say thank you from the bottom of my heart for sharing your most inspiring story.

      I do hope you have the best Christmas ever…and it seems you are off to a very blessed and beautiful start.

      Merry Christmas Kedaso !


    • December 22, 2008 at 4:38 pm

      Thanks for sharing with us. I saved your story and will read it every time I start to feel sorry for myself. I am one of the lucky ones for whom IVIG works pretty darned well.

      Thank you and have a wonderful Christmas and maybe even a miraculous new year.

    • Anonymous
      December 22, 2008 at 6:31 pm

      Thank you for sharing your story with us. I think that in doing so, you have a legacy because when we feel sorry for ourselves and we have a right to, we can pull your story up and read it each Christmas. It reminds me of an old story that teaches us a lesson. “I met a man who had no shoe, I met a man who had no foot, I met a man who had no leg”.

      God Bless you and keep you in His care. You’re getting your house in order.

      I’ll be thinking of you on Christmas day and will light a candle for you.

    • Anonymous
      December 25, 2008 at 12:05 am

      Your story is definitely an inspiration and a blessing. Each of us can relate in some way or another to your story. I will pray that God provides a way to heal you and allow you to enjoy many more christmas’s with your partner and your loved ones. And just so you know, I would love to have a christmas with you, it sounds like it would be so magical.

      take care and Merry Christmas


    • Anonymous
      December 25, 2008 at 4:50 am

      Thank you so much for sharing your magical Christmas. You sound so happy I’m sure all the preparation was worthwhile. I wish you a very wonderful day today, free of worries and pain and surrounded by loved ones.

    • Anonymous
      December 29, 2008 at 2:14 pm

      Hi all,
      Thanks and best wishes to those who responded to me.
      Well, it went very well. It will go down as a most memorable Christmas, as because of starting so early to prepare, I was able to completely enjoy all the festivities.
      I think I kind of over-did it on Christmas eve, as I got up my normal time of
      3am, and was still up at 10pm as that was when the guests were leaving.
      I was very weak on Christmas Day, though made it to about 730pm, right before the last course of the huge Italian feast, the dessert course. But, I was able to enjoy the company of the invited guests–they all understood my early departure to bed. The gift opening was absolutely crazy, with wrapping paper and boxes everywhere. And the food was EXCELLENT. Seafood Christmas Eve, and the Sicilian feast on Christmas Day….yummmmmm.
      Yesterday, we started freezing the leftovers–there is a TON of food left.
      I have been very weak since Christmas Eve–on 26DEC, I spent almost the whole day confined to my bed, and same for the two days following.
      Today is the first day I’m feeling a bit normal.
      But it was all worth it. I love this time of year. I totally enjoyed it, and, hopefully, I will still have another Christmas again.
      I hope all of you had a GREAT holiday, and was able to enjoy everything.
      Happy New Year to all, with much good luck, GOOD HEALTH, lots of love,
      and happiness in 2009!

    • Anonymous
      December 29, 2008 at 3:01 pm

      Christmas at your home must have been very beautiful with all the work and love you put into it. Great that you enjoyed all the festivities, company and loved ones. Your seafood menu sounded wonderful along with everything else you described. Must have been like a beautiful winter wonderland with all the decorations and Christmas colors.
      Thank you for sharing your story with us.
      Happy New Year to you and your partner.

    • Anonymous
      December 29, 2008 at 4:52 pm

      Thank you for sharing your story. I hope and pray they you and your partner will have a Happy New Year and be around to share next Christmas with us.