update on me and mom

    • Anonymous
      October 3, 2007 at 8:17 am

      Hello everyone.

      It has been a very tough few weeks but I wanted to give an update.

      I have an appt with a physio medicine dr on the 12th for a consult and to get the AFO’s started. I guess she will write the script and I go from there ?
      MAC34 gave me a great website.

      Last Saturday night, I took my son to see Trace Adkins b/c we just LOVE the badonkadonk song…but, I really had some problems. Walking from the car to inside the arena and clear around the place….I’d imagine the walk was about a mile…I sudddenly started feeling very weak in the legs and feet on both sides. I could barely lift my right foot…and it’s always been the left. My husband was at the race in KC so it was just Connor and I. I kept stopping- thinking that it would pass if I rested a minute and we were almost at our seats. I just kept thinking what am I going to do, I cant walk. Connor is just five now and he held my hand and was my hero but couldnt hold me up like my hubby could for support. Eventually, we made it to our seats ….but I was so scared. I never felt so afraid of not being able to walk. I know now that AFO’s are a must. I absolutely cannot walk distance without help anymore. Usually my husband is with me and he’ll hold my hand and that helps. I dont even know if a cane would have helped me. Things got better as I rested during the show and I was able to go get popcorn and take the little guy to the bathroom and go back for more pop and popcorn,etc. I am so thankful that I made it and was able to walk….even tho it was barely.

      Since that night, I have had terrible pain in my legs….so much so that I limp and barely can walk b/c of the pain. It’s like muscular on the right leg…in my calf and its as hard as a rock. My left leg burns above the knee. I dont know what’s going on. The nuero called in a script for prednisone dose pak for five days and that’s helping.

      We loved the concert and my “date” was the best ever. They had a rodeo…the finals I guess…before Trace Adkins performed. We’d never been to a rodeo…even tho we live in Nebraska. It was different for us…I AM a city girl afterall. It’s going to be on tv in November.

      My mom is still very very sick. She is in a nursing home now after spending fourteen days in the hospital with pneumonia on both lungs. They found cancer on her uterus and that is something else we will have to deal with later. Right now we are trying to rehab my mom with physical therapy and such but it’s been a week and no change. She has given up and doesnt want to try. And, if only she would…her prognosis is good in that they think they got all the cancer in her lung…she can do chemo and live longer. After the breast cancer and chemo with that…I think she just doesnt want to do it again. She doesnt eat. She’s lost so much weight and she’s just bones. She doesnt smile. She doesnt even walk. She’s weak. She’s not the woman she was two months ago. It’s killing me to watch her give up.

      My sister and I are going to talk to her and see if we can convince her to try.
      I dont know what else we can do. I just know that it crushes my heart into a million pieces every day that I see her laying there wasting away.
      They make her go into a dining room for meals. She sits in a wheelchair and picks at her food…and after dinner….by 6pm, she’s ready to go to bed for the night.

      I wish so much that she’d come back. I need her still and I’m not ready to let go. I dont know how.

      thank you all for your continued prayers.


    • Anonymous
      October 3, 2007 at 8:37 am


      Keep your head up and keep reaching for the stars. Don’t ever give up and have a positive attitude about the situation. It will all turn out in the long run.

    • Anonymous
      October 3, 2007 at 9:01 am

      I read your message and it make me just sit back and take a big deep breath. Life is too short and we all have to stop and smell the roses and enjoy those things around us that we don’t normally think about. We think we can do that later or that person will be around forever. I am glad you decided to take that trip with your Son. I have spent the last two Summers stretching myself to the limit to go watch my Brother enjoy his racing hobby. Some nights I am ok and others I am just drained. You were listening to your body and knew when to rest and it is very frustrating and totally scarey. Especially when you have a child with you. But it was GREAT that you did it! You are building those memories! I think you are smart to meet with your Sister and then go talk to your Mom. If she will not smile for herself and you and your Sister, tell her to atleast gave that smile to your Son to remember. Also remember that if you keep smiling around her it is contageous. I have smiled thru all of what GBS has delivered to me and it is nice that I have lots of people come sit near med at the races. They always make sure to ask me how I am feeling and really seem to mean it just not use it as a greeting. The volunteer to go get me things when they are going toward the parking lot or concession stand. Just saving me those few steps some nights seem to be like throwing me a life ring. I am still getting better and have very few set backs because I have learned my limits. But you have to sometimes extend your energy here and there to reach for something that you would not normally do and that is what you did! Your Son will not remember how tired, slow scared you were. He will remember that you took him there to see something he enjoyed! Thanks for sharing it is a great story to remember when I am feeling like letting life go by. 🙂

    • Anonymous
      October 3, 2007 at 10:24 am

      My heart goes out to you and your family. I hope things improve soon.


    • Anonymous
      October 3, 2007 at 9:15 pm

      Thanks so much for letting us know how you are doing. It was wonderful that you went to that concert with your son! You need to have some fun in your life too 🙂

      I will remember you and your mom in my prayers. Life sometimes gives us more than we think we can handle, but grace gets us through one day at a time.

    • Anonymous
      October 4, 2007 at 8:54 am

      dear Stacey,
      I know what you are going thru as I am in a similar situation with my husband. He is in intensive care since 6 months ( past ) on a breathing machine due to a pneumonia. His breathing muscle has been affected by his CIDP and he’s given up on doing anything for him to get better, he is refusing even suction or fizio. We’ve got 2 children (13 and 2 ) and he doesn’t seem to be bother to much of their existence.He is very depressed and none of the them meds are helping him. They discovered now he’s got plasmacytoma- a type of cancer in the bone marrow- this put him off completely , since we’ve found out he is sleeping day in day out, refusing treatment as well. I feel so helpless, no matter I would tell him or remembering him of the person he was once doesn’t get thru him. Sometimes I feel angry with him because we are trying so hard to help him, given up everything( I am spending all day long with him in hospital and almost at all with the kids) and he doesn’t wanna do anything not even to speak to a psychiatrist which they said it might help to clear his mind out. What is there left for us? I think believing in God and pray one day they would wake up hungry for food and life. And of course keep persuade them to try and telling them how strong they use to be and can be if they would try…….. Keep your faith and don’t forget you are not alone and there is hope.

    • Anonymous
      October 4, 2007 at 6:36 pm


      I was’t going to post — what could I say that is meaningful with everything you are dealing with?? I’m a mother too, and when I got the dx, my first prayer was please let me live WELL at least until my kids are old enough to handle things. So far, so good, but they are only 12 and 15 — not old enough so I will continue to be strong. I am in remission – was in remission — this week, my face, arms and hearing are effected. I suppose more IVIG in in my immediate future. Last night I couldn’t even open a can of spaghetti.

      Hang in there — be strong. You do and I’ll do it with you.


    • Anonymous
      October 4, 2007 at 7:15 pm

      Daniella, just want to wish you the best — get your husband on ADs if you can and sorry for what you are going through. Depression is very difficult, I’ve been there but was halped tremendously with the right meds.

    • October 4, 2007 at 8:42 pm

      Hi Stacey!

      I am so glad to hear from you! How wonderful you found the stregnth to make it through the concert. i am sorry about your mom, I will pray for both of you. Try to keep strong!

    • Anonymous
      October 5, 2007 at 1:22 am

      Stacey, That Date sounds like it was Really Fun!!! You faced Your Fear Lady!!! And You WON!!!:) Keep up the Good Work! I think You need to Go on More Dates!!;) Just know, your Date thinks You are the Coolest Mom Ever!!!
      It sounds like Your Mom could Use a Little Date herself! I have You All in My Prayers and Thoughts! Big Hugs to All of You!

    • Anonymous
      October 5, 2007 at 1:54 am


      What a fun time you had with your little man.

      I’m so glad that you are following through on the AFO’s…that walk to your
      seats made me cringe…I know the feeling – will I make it there or not? That
      has to be the scariest feeling in the world. But you did it!!!

      I’m sorry about the news on your mother…my prayers are with you and her.
      God bless her…

      Miami Girl

    • Anonymous
      October 5, 2007 at 12:20 pm

      Hey Stacey,
      I am so glad to hear how you are doing. Man, I hate that scarey feeling of not knowing if your going to make those few more steps or not. Hurray for the AFO’s. May I suggest that you see an orthodic specialist though? It really helps to get custom made ones instead of over the web. Just a suggestion. I am sorry your mom is suffering. I am glad that she is in a safe place though where she is getting care and you can get some rest. Remember that we all have to make that decision about wheather to go on or not. All you can do is tell her how much it means to you to have her in your life and let her decide. I am so sorry. It is so so hard to watch your parent grapple with this. I did it and I will never get over it. But I have learned how to live with it. Just like this damned disease. I am thinking of you. Stay in touch.

    • Anonymous
      October 6, 2007 at 10:00 am

      [QUOTE=Meadow]Daniella, just want to wish you the best — get your husband on ADs if you can and sorry for what you are going through. Depression is very difficult, I’ve been there but was halped tremendously with the right meds.[/QUOTE]
      Even this thread is suppose to be for Stacey I thank you so much Helen for thinking about me and reading out my post.Thanks a lot again.

    • Anonymous
      October 6, 2007 at 12:42 pm

      Thanks everyone.
      In case you didnt notice by now, Connor is my pride and joy- My reason for all the things I try to do right in this world. I wish I could figure out how to post a current picture of him. He’s blonde with big brown eyes and a million dollar smile. His eyes and his smile get me thru more than I can explain.

      We are all facing tough challenges…whether it’s with ourselves, our spouses, our children or our parents. It’s a wonderful thing to be able to come here for support and always get the boost we need from each other. Too bad we couldnt plan a get together/ get away- from -it- all and meet someday.

      Like many of you ,it’s very hard to deal with all the things I am dealing with. It’s life tho. It’s my life and the cards I’ve been dealt. There are times when I fall apart and there are times when I am strong…and thru these times, thanks to all of you for your support and encouragment and “ears”.

      I wish there was a magic wand so that all of us would be without so many struggles.

      I’ll be in touch….

      have a great weekend everyone !


    • Anonymous
      October 6, 2007 at 3:23 pm

      We alone as people forget how much more IT can hurt for the kids….I’ve never forgotten that aspect….I know that Connor is only doing so well, BECAUSE OF YOU, and your instincts and faith in what is right and needs to be done.

      Now, all we need is to have Connor grow up to be PRESIDENT or something! Then thinking patterns would change not only from the top down, but from the bottom up! Not at all that I am pushing this idea or anything…

      I am super glad that YOU got out to play tho! Sick family, other issues always seem to intrude on our needs to plain out PLAY? Even to the to-ing and fro-ing can be well, awkward at best..if you STILL had fun, that’s is all that counts!