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twinmommie72

Distinguished member
Joined
Jul 27, 2010
Messages
132
Reason
PALS
Diagnosis
08/2010
Country
US
State
Va
City
Southern
:cry: "Quality of life"..."Don't think about it"...Forgive me for complaining here. I'm so scared and I don't know what is going to happen next. How can I find some peace? I've prayed and prayed for peace to enter and God take control, but the damn cloud lingers with every twitch. I look into the eyes of my now 4 year old twins and I break down everytime. I don't want them to see me suffer. I don't want to be alive and not be able to hold them. My voice is already bad enough that I can't read them bedtime stories anymore. How can this be happening? I'm wanting to know what can I do to help keep me here a bit longer. I've started the Rilutek but the vomiting is bad...Is it really proven to extend life? I can't see how it can help when the side effects are keeping me from that "quality of life" that I keep hearing. I hated that phrase when my father was diagnosed with cancer. Now I get to hear it ALL the time. Yeap...guess I'm in an angry phase. Someone throw me a life jacket and help me float! I'm drowning in my own tears. Also...does anyone have pain? I'm having some between my shoulder blades. What do you take or do to help it?
Please throw me a rainbow!
 
I'm really sorry it's so fast. I never took the Rilutek. I think there are times when crying and letting pent up emotions out is the only thing you can do. I will pray for you to have peace.

I have an amplifier to wear for my whisper. It wouldn't help if the problem is slurring, but if it's volume related, the loan closet for ALSA has these amplifiers ( you and I have the same branch, although different Coordinators).

If someone could give you a back and neck rub, it might help. A heating pad helps me when I can sit to be "plugged in". Pillows help in bed with pain, and I take Tylenol a couple of hours before lights out.

I wish I had a rainbow to throw you. Believe me, I would throw one if I did. I sense that you really need some assistance to help during your daily tasks so you can get some down time.

XO,
Ann
 
I don't know if this will help, but I have the best intentions at heart. I am watching my husband who served 22 years in the Army go down fast. He has our grandbabies crawl up on him. He can't lift them anymore. He always tells me every single day that he is home from Iraq is something to celebrate because many of his buddies died over there. I (who do not have ALS) share your feelings. I am mad that I wait until 40 to find my dream man only to find out I'm losing him! I cry a lot and I'm so mad I could explode.

I wish there was something, anything... for you. Dana takes Soma and hydrocodone. Also Zanax to sleep. My thoughts are with you.
 
I would throw you a rainbow if I could. I know how you feel when you look at your kids.:cry: I've been taking rilutek, who knows if it is doing any good - but I don't have any reaction to it. Vomiting seems like a really strong and very bad reaction- I can't believe your doctor would keep you on it.
 
I wish you more than anything relief from pain & to be able to read to your twins.Does anyone come in & help you? I will put you in my nightly prayers.God Bless you
love ya
Sharon
 
forgot 2 tell u yes I have always had pain from the beginning . one doctor told me there usually isn't pain associated w/als I quess there learning from us that there is pain.
 
Sorry I have no rainbows to throw you but perhaps an idea to help get you some relief? I think it would be really good if you told your doctor about how you are feeling and asked about some anti-depression medication. You have a lot to deal with and depression in PALS is not uncommon. Please explore the idea with your doctor.
 
the rainbow is in your children , the life jacket is the als formus .. dealing with it is in the time you have , if you are throwing up from the medicin talk to doctor to get off it .. smiles and kisses mean a lot to kids you can hold them in your eyes , heart and your smile , and on your lap it will stink when you can no longer pick them up but , you can still show them love ... this a.l.s. suxs as it is but to have it young and have young children is a double whammy , joel has a site look at it , his post also it will help you take controll of how you are going to handle this and everyone here will help you as best as we can ... i wish i could make it better for you and everyone else ... wishing you the best
 
I too have been concerned about what my quality of life will be. When I look into my grandkids faces ages 7 & 4, I just can't get enough. I know how you are feeling because I'm feeling all those things as well. Thanks for posting as somehow it helps to know someone else really knows how I feel. I wish I could stop crying and get on with life. ALS is so difficult to forget about as you go thru your day. I'm on Rilutek and I believe it is causing dizziness. I was out of it for a couple days and the dizziness went away! Now it's back. If it is caused by the drug I'm not sure I want to spend my days dizzy.
I will pray you are able to get some measure of peace and not let ALS rob you of some quality time with your children. God Bless YOU. Roxanne
 
My thoughts and prayers are with you, twinmommie. I'm new to this situation as well and have run through a lot of different emotions, thoughts and reactions. I guess the only thing I can offer isthat while we don't have a choice in how this affects our bodies, we do have the ability to choose our attitude about it. I've decided I want my family to still see the same man they've grown to love, with the same goofy sense of humor, same strong faith in Jesus Christ and same passion for good music and good food. It was when I couldn't lift up my 3 year old granddaughter this summer that I went to see why my shoulder wasn't improving. That started the testing that led to diagnosis. Pour all your love into those two little ones, they will have cherished memories of their mommie forever.
 
It' hard twinmommie and I wish u the best, when emotions get bad don't b scared 2 take meds I take them otherwise I would b an emotional mess even after all these years my thread is living w/als 10 years please visit me there we can talk Ill b here most of the morning GOD BLESS U AND FAMILY
 
Hello TwinMommie, I'll send you a private message full of hugs! You need alot of support right now, are you getting it? Someone to talk with, someone who isnt afraid of your emotions or pain, but believes in you, that you have the inner resources to deal with this. Glad you are reaching out here! Will hold you and the twins in prayer.
 
twinmommie- im very sorry this is all happening and it is affecting you this way. i want you to know that you are stronger than you know. This disease slowly takes things away from all involved, so in a way, its almost like a death of something. So, we mourn. And that is perfectly normal.
As others have mentioned, if you are not already, think about getting on an antidepressant. I always thought it was pretty typical for doc to prescribe them, because of course depression comes along with this beast. If it didnt, THEN something would be wrong.
Also, do you know about emotional lability (sp?)? I believe it is described as "inappropriate" emotions, such as crying or laughing. But lots of folks are seeing that the inappropriate part of it is confusing. It doesnt necessarily happen at inappropriate times. You may have some emotional issues come up and the emotional lability makes you react stronger to them.
Does this sound right, guys? Anyway, i just thought i would throw that out there, that maybe you are having touch of that as well. There are meds for it.
Even if youre not having that, it is so understandable why you are feeling the way you are. Keep posting so we can continue to support you. Good luck and please take care.
 
I use Tramadol for pain. Get a lot in my feet (swelling); knees; hands and shoulders. Been recommended to try some special home made cakes with an added ingredient. Even though it's llegal what the hell if it helps I'll try anything ! Riluzole is really expensive for me but I might as well take it too.
 
twinmommie

my only consolation is that my 14 year old son doesn't have this terrible disease and I'm thankful that's it's me and not him. I've been taking antibiotics and am feeling better but the atrophy is still progressing. Have you tried antibiotics? Rocephin helped me alot.
 
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