Update on me

    • Anonymous
      November 1, 2010 at 10:39 pm

      Hey everyone,
      I hope you guys are all doing very well. I am back at school and i am doing Fantastic. The first couple of weeks were really tough with friends but i sucked it up and made new ones, because my old ones basically left me out to dry by myself. I am still dealing with the weight i put on threw steroids to, and i have been pretty insecure about that, but im still working out and trying to eat healthy. I also was asked to be on an advisory council for the University Recreation , so i took it and now i deal with the disability stuff on Recreation programs. In one of my classes last week we were talking about ALS and MS so i stood up and started talking about CIDP, and everyone was in aww it kinda felt cool to be the educator. I also ended up being a new friends project for a class, after she heard my story, she had to write an article on me. so i if anyone wants to read it then i can definitely email it to you. I almost started to tear up when reading it tonight for the first time actually. I do have a question though, does anyone’s hands cramp up at all? My hands have been shaking a ton and every couple of hours they will start to cramp up. I have been drinking a lot of water so i know it isn’t because of a lack of H2O. So if anyone is experiencing this please tell me so i can figure it out. I have also gone out hunting this year and i nabbed my first deer this past Saturday night. It was so exciting i never thought i would be able to go back out hunting, but my grandparents bought me a cross bow so i could. I attached a picture of me and my deer, its a doe but at least its something lol. Anyways i hope everyone is doing GREAT!!! I know this is a terrible disease, and i also know that everyone can pull threw it if they dont give up. So Keep on fighting the fight. I will try to post more frequently but i have been so busy lol. Talk about getting that education Hahaha. Talk to you all soon. 🙂

    • Anonymous
      November 2, 2010 at 12:30 pm


      So glad to hear you continue to do well and are back at school. That is really wonderful news!!!!

      My hands used to shake often, not so much now with treatment. I’ve never experienced having my hands cramp, so not much help there.

      May you continue to do well and help others by educating them about this disease and disability.

    • Anonymous
      November 2, 2010 at 12:53 pm

      Nice deer! I know you Michigan boys love to deer hunt, as do we here in rural Pennsylvania. Glad to hear you are doing well. Keep up the good work. I too have experienced hand shaking and tremors, and still do. Treatment has helped a little. I have never experienced hand cramping.

    • Anonymous
      November 2, 2010 at 3:58 pm


      I experience hand shaking and tremors most of the time. Before my tx really got going I would experience hand cramping also. It isn’t something that has happened in quite a few years though, but when it did it was bad.

      Some recovery time and repeated infusions have made the cramping much less, so while I don’t have it now, I did have it the first few years of my illness.


    • Anonymous
      November 2, 2010 at 8:46 pm

      When I’m rundown or even not seemly rundown, but may have done a lot with my hands, they will shake. I make sure to get enough electrolytes and protein, which helps. When I have really overdone, dystonia sets in as does partial paralysis, which forces me to rest.

      Ryan, I’m so glad to hear you are doing well, and finding you stride back at school. Your new friends are very fortunate to know you!

    • Anonymous
      November 3, 2010 at 12:46 am

      Congratulations on your recovery in progress !! I am so happy for all of your progress.

      I would also urge some caution to take care of yourself. It is easy to burn the candle at both ends and not get enough rest. I don’t want to sound like a nagging parent, but I only want the best for you.

      I am completely proud of all that you have gotten done. You should feel great about it. Hang in there and keep on keepin’ on !!

      Dick S

    • Anonymous
      November 4, 2010 at 12:07 am

      I couldn’t be prouder of you than if you were my own son!I remember those dark days all too well, & am so glad that the worst is over for you. Back at college, wow, & bagging a deer as well. Deer hunting opens in MN this weekend & it is THE most important holiday in our household for my husband, my son & my son-in-law. We have 40 acres & a shack (out in the middle of nowhere) & any one of them would be real happy with a doe. There are lots of wolves up there & one has to work very hard to get a deer.

      My hands cramp, especially on the days I have water aerobics or if I have to write too much. Try a tsp. of regular mustard & see if that helps.Usually it helps me almost immediately (not too pleasant though.)

    • Anonymous
      November 4, 2010 at 3:24 pm


      Great to see that you are back to school and able to hunt. That dear look huge compared to what we have down here in Florida. Yes my hands will cramp and shake. Thats one of the reason I’ve gotten Dragon Natural Speaking to do my typing for me. If I try using my hand for a extended periods of time I know that they are going to start cramping. In addition to the cramping there is unusually an assortment of unpleasant sensations that register rather hight on the pain scale.

      Your cramping may come from over exertion. If so you need to build up slowly. Typing can work havoc on the nerves in you hand. So a program like Dragon may help. See if you can test drive one before you buy it because even at the students price it’s going to run around a $100.

      I’m still working with Dragon. It has a hard time understanding a mixed Southern / Jersey accent 😎

Update on Me

    • Anonymous
      December 3, 2007 at 7:34 am

      It’s been a while since I’ve updated.

      So much goes on and it’s so hard to find time. My mom came home from the nursing home the day before Thanksgiving and all was going pretty well. We were super suprised by her and that she was doing much on her own.

      She was home two days and began to complain of extreme back pain. She has compression fractures on her spine and was given heavy duty pain meds last week. Saturday when I talked to her on the phone, she was a bit confused and loopy and I suspected it was the new meds.

      I didnt stop to see her b/c a friend of hers was there and staying the night.
      Her friend called us yesterday morning to say that my mom hadnt worn her oxygen all night…(she’s at 4 to 5 liters even while resting). My sister got there before I did and found her to be very confused.

      Long story short, she’s back in the hospital with some kind of infection and possible pneumonia again. As of last night, she was still confused and had not taken any of those pain meds since Sat night so that wasnt it. It was the lack of oxygen I think…I hope.

      They are going to do tests today to check her heart. She’s weak and thin and grey and sickly. In my heart I know that her days are numbered and it’s hurting me in a way I’ve never hurt before.

      We knew that when she did go home from the nursing facilitly that it probably wouldnt be for long…that eventually she’d need more care…I didnt expect it to be within two weeks…and I can only hope she will go home one more time, having one more chance. She was doing well before the pain started…she really was.

      I got my AFO and no, I dont wear it like I should. I have worn it and am slowly adjusting. It does feel funny and will take some time to adjust. I’ll get there. I’ll wear it for distance and such.

      I am otherwise ok. Trying to find some holiday spirit and pretending at least for my son. Santa is very real this year…at age five…he’s SO into it.
      The magic in his eyes makes every day a little easier.

      My best wishes to all of you…I am here, just not always able to reply.


    • Anonymous
      December 3, 2007 at 8:33 am

      Stacey, Thats Good News that Your Mom was able to be home for those 2 weeks. I’m sorry to hear she is in soo much pain and back in the hospital. You All are in My Thoughts and Prayers. My Grandmother-in-Law had the same type of spine fractures, that is soo unfair that Your Mom has to deal with that on top of her Lung issues.
      You Hug that Sweet Young Man of Yours for Me also:) I know how you feel when you look at him, I do the same with my son. I watched the Rodeo on tv yesterday and thought of You 2:) Glad to hear you are getting some use from your afos-I’m proud of You Girl!!;) Please try to Take Good Care of Yourself during these stressful times. Big Hugs!

    • December 3, 2007 at 11:37 am

      Try to stay strong! I am so glad that you have your son to keep you happy!

      The magic in a childs eyes during the christmas season is the best gift ever! Kevin still believes in Santa too, and he is going to be eleven Dec. 18th. I suspect this will be the last magical year.

      Best wishes to you and your family regarding your mothers health. You will be in my thoughts!

    • Anonymous
      December 3, 2007 at 2:36 pm

      Just try to take one day at a time right now. When you’re feeling really down, let your son tell you about Santa and Christmas and see the excitement shine in his eyes. That’s a real spirit lifter. I truly understand how you feel right now. My mom came home from the nursing home the day after Thanksgiving. She’s aged more now, in depleted health and she could die within a years time. Her life is laying in bed now.

      After the holidays, when you’re ready, I’ll teach you how to post photo’s.

    • Anonymous
      December 3, 2007 at 4:30 pm

      Hi Stacey, So hope that your Mom improves. I am her age and not anywhere close to all her illnesses. All I can tell you is keep in close touch, even if she is foggy. Maybe a call if you cant see her in person. Take her lots of drawings from Connor and hang them where you can. I lost my Mom to cancer 28 years ago and still miss her daily.
      Husbands are so annoying sometimes, but they barely understand. When I was in the hospital 16 days, it finally hit Larry. He is a wonderful caretaker, took over the cooking, plus he has loads of outdoor work. My two daughters live within minutes of us, but dont see much of them, they are so busy with work and their socializing. A phone call or email is so appreciated. They do not understand this, and they think I am lazy because I quit walking (maybe right).
      So Stacey, dont let yourself get too down. Cymbalta helps me so much The nurses were amazed when my doctor informed me my ankle was broken last summer and I came out of the office smiling. Dont be ashamed to have an antidepressant help you. Keep with the AFO’s!!!!!
      How is you snow, we couldnt get in touch with Larry’s sister down there. We are iced in, even the wild turkeys are having trouble walking
      A hint for a wonderful Christmas book for Connor if you can find it. It is simply “The Santa Claus Book” amazon is sold out.
      Keep resting and take care. Regina

    • Anonymous
      December 5, 2007 at 8:05 am

      We had ice on Saturday but by afternoon everyone was out and about. Tomorrow they are talking snow…2 to 4 inches. We never know till it hits. The weathermen just guess the best they can.

      Thanks all for the well wishes with my mom. She’s still in the hosp. The brain MRI was negative for bleeding or cancer spreading …we’re waiting on more tests. She is still confused. Her blood sugar is all over the place…going way down and way up.
      She is so not herself. I cant even talk about it right now. I’m at work and it wont take much for me to be a blubbering mess.
      Connor is driving me nuts with wanting to open presents and he wants to go shopping just to LOOK at stuff. He’s so excited he can hardly sleep ! We have the carrrots for the reindeer and he’s wondering what kind of cookies to leave. What deception…we lie about a man in a red suit that is magic with reindeer that fly…travels all over the world in one night…sees us when we’re sleeping or/and naughty….ha. You’d think as children learn the truth they would be really mad at their parents.
      My step daughter is 11 and I dont know what she believes so I just tell her, if you dont believe, you dont receive.
      I do want to learn how to post photos…Liz, I will pm you when I have time …thanks so much for offering to teach me !

      good day everyone.


    • Anonymous
      December 5, 2007 at 10:20 am

      Will pray for your Mom and for God to give you strenght to deal with all of this.
      It must seem overwhelming at times.

    • Anonymous
      December 6, 2007 at 8:41 am

      thank you all for your prayers and well wishes.

      Yesterday was a bad day. I went to see my mom, as I do every day. She lies in the hospital bed and for the first time, I saw, she is truly dying.
      She struggles to make sense when she talks…I mean, she has to really concentrate on what she is saying b/c she knows she gets mixed up. Her blood sugar was 60 and they gave her three containers of OJ and cookies and it dropped again to 52. After more juice and candy, it went back to 60 something. I think that could be causing some of the confusion.

      After I’d gone home she got up to go to the bathroom…which, I dont know why…she has a catheder. But, she slipped as she tried to get on the commode and said she feels like all of her ribs are broken. She was literally screaming in pain. We had to call the dr on call OUTSIDE of the hospital to tell the hospital to give her something stronger for pain. She was in wretched pain.

      My dad died in 1991…I was 20. I remember being there every day after school…I was in college and maintaining a 4.0 grade average. I’d tell him how I’d aced another test and he was so proud. He died at home after a long battle with kidney cancer. I remember his last days…I see my mom becoming what he did and I am trying to hold it together. It’s so hard to accept this is real. She wont be going home again. We have to find placement for her…the social worker hasnt talked to us, nor has the dr…but the nurse said they will be and that we need to find a place for her.

      I know others here are dealing with ailing parents, too. I know some have already lost their parents and siblings. I’m not ready for this .

      Last night as Connor was in the bath, I fell apart and just cried. I hate to cry in front of him. He doesnt understand. He loves his Nana so much and he’s scared she’ll be going to Heaven.
      He said to me, “Mommy, maybe sissy can make you a pooh card on the computer and when you cry at night we can make you breakfast in bed”.
      Sissy is my stepdaughter…whom he fights with regularly. I hugged him and told him that he’s the sweetest boy in the world. Of course, that sweetness made me cry even more.

      I am a never-let-em-see-you-sweat type of person…at least, I used to be.

      thank you for your prayers.


    • Anonymous
      December 6, 2007 at 12:19 pm

      Sending You Big Hugs, Stacey!

    • Anonymous
      December 6, 2007 at 10:31 pm

      Your son sounds so sweet … like mine! 🙂
      I hope you all find peace soon. People shouldn’t have to suffer to transcend. Just know that we all are with you in our thoughts and prayers.