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JenniLee

Active member
Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
Hi everyone!

Sorry I left for a while; it's been so hard. My family, for some reason (something to do with my husband), have been keeping their distance from me...I've been struggling to regain my emotional strength because of it. All my life I've been there for all of them; nursed my father after hip surgery; nursed my mother through 2 bouts of cancer, etc. Now, I'm alone...my husband works during the day, and I struggle to keep a poker face in front of my 2 girls (5 & 6). I have no energy and feel deeply depressed.

I went to Columbia 4 weeks ago. Dr. Gordon is re-running all of my tests. He would not confirm or deny a diagnosis at that time. Tomorrow I go for the EMG and an MRA (I think). I see him again on the 31st. He told me to exercise, moderately, and get out and do my gardening. I've done gardening, but can't seem to get the energy to exercise. I feel a prisoner in my body.

Went to a homeopath and my cramps and twitches have lessened dramatically. Also, the shortness of breath is gone. I am seeing physical therapist, and have to see a speech therapist...is there anything speech therapy will do?

My poor girls..especially my biological "baby"...they see mommy can't do what she used to and it's dissappointing. I am dissappointing to them...to her. I want so much more for them. You know what the joke is? When I adopted the 6 year old, I wasn't ready, I wanted guardianship..but, my husband said "if you don't agree, I don't know where our marriage will end up". (It's his granddaughter). Anyway, everyone was so worried she would grow-up without her mother. Well, I have allowed her biological mother to have some contact, and I've been a full-time mother to her. In the end, she will still have her biological mother out there somewhere...but, what about my baby? Who will she have?

I'm trying so hard to stay positive, but when I'm tired and my speech is labored, it get the best of me. I feel like such a burden. I don't know how to get my head screwed on straight. I feel like the fight and passion of hope are within reach, but I also feel stuck. I've had some wonderful days, but, more overwhelming, sad days of late.

Thank you for listening; it's more than I've done for any of you lately. I'm sorry.
Jen
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
Jen,

Firstly, welcome back and now, you need to come back more. the best thing about this forum, is you don't have to contribute anything..there is enough support for all of us, which is exactly what your going to get.

YOu need to get yourself out of this rut somehow (i'm in one too, but good at helping others get out of theirs). Have you tried some dep. meds, such as wellbutrin or zoloft, etc? That's what really helped me.

ON the kids, i am exactly the same issue. My wife is 28, i'm 32. I've got a boy 6 and a girl 11 months.....and she's a daddy's girl.

I'm not diagnosed, but feel its only a matter of time, next visit in June will be the horror date.

I'm so scared and its making me crazy, thinking, of someone besides myself with my wife and raising my kids. I know its selfish, but that was my job and i'm going to damn fight with every tooth and nail to do it.......

Have you been diag yet? YOu have alot of the same issues i have, but i have more muscle wasting and reallly, no clinical weakness.

Take care and come back more often.

Rgds,

Jamie
 

brooksea

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Joined
Sep 27, 2006
Messages
5,171
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Other
Country
HM
JenniLee
I can only imagine what you must feel as a mother. My husband and I adopted our son as an infant and now my husband's greatest fear is that his son will not remember him. He keeps telling me "promise to remarry so he will have a daddy." It breaks my heart. It seems so ironic that God would provide this child for us and then take the daddy away. But I can only pray that there is a reason.

You also have to think that there is a reason why you were provided with the children you have. Maybe your illness will be an inspiration to them in the respect that they pursue an education in research or medicine or social work to help others with debilitating diseases.

As far as the biological mother of the child you adopted, I suspect you are regarded as more of a mother to the child. If you have been able to adopt her then I'm sure the birth mom was not there for the child as you are now. Just try to be as much as you can for both of them as you are. Children adapt very readily with love.

I wish you the best.
CJ
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
JenniLee,

I am so sorry you are having such a difficult time right now. Please know that before I sent this post I said a prayer for you and your family. My dad was diagnosed in February 2007 and it is the most difficult things we've been thru. I cry daily wanting so badly to make things better for him.

Please try to stay as positive as possible...I firmly believe that when you get down the disease trys to get you down worse too. Please know that you have so much support on this forum. They've gotten me through some very rough patches...

Praying for you!
Michelle
 

sufernan

Active member
Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
As a mom

Hello Jen,
As a mom I know how you feel. It must be so hard to think of your children growing up without you, heart breaking .... there are no words that can take that pain away. I do want you to know that after Daniel died I feel him around my son all the time. He is here with us, I know this. So, your children will not see you but they will feel you and you will be right there with them for the rest of their lives. This much I know, and I hope this tought will bring you some relief to your pain. They may not have a mom on earth, but they will have an angel on their backs watching and helping them every step of the way.
Love,
Sunny
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Thank you for being honest Jen.

Hi Jen,

That e-mail brought tears to my eyes. The challenge to just live within these bodies of ours is difficult. Tell us about those little darlings if you'd like.

I decided today to focus on my closest relationships now. Especially that friendship with my husband and our children. I just phoned our daughter to let her know I could not make the plane ride to visit them this weekend. My plan was to go play for a couple of days. My body can't make it alone and I am so bummed. Still, she understood as we both cried and she is coming to visit us for a week next month. I'm having to be realistic with my limits. Just one year ago I was cruising the coast of California by myself. I am no longer even able to drive now.

I think it's important to know when to have the mask on and know when to know it's safe to be real and take it off. Peace be with you....I thought I'd....pass on some hope.

Frizzel
 

gilly

Active member
Joined
Jul 24, 2006
Messages
56
Country
US
State
NY
City
New York City
hi there jen.

i am totally unqualified to offer advice but i want you to know that everyone on this forum is so wonderful and supportive. i hate to hear that you feel abandoned. please keep yourself involved in the chats that go on here and let us know when you need that extra bit of attention to get through the day. we will be there for you. you are never alone. your family may be feeling as freightened as you are and therefore they are all keeping theie distance and trying to work things out in their own heads.

i will say prayers for you and your family. it will be ok. just hold on.

xo nicole
 
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