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Helpless but not hopeless..

Tiffany

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:angel:.. I love the smileys in this place :clapping:


Hi Everyone!

It's been a long time since I have visited here. I'm very happy to see the people of MJJC thriving and doing well. I am trying to do my best as well,hanging out with old friends and doing some things I wasn't able to do before. I'm so glad to see you all. I hope you're well.

For years, My body has been wearing down. Last Friday,I heard from the doctor as to why.. and It turns out I have this rare genetic disease called Charcot Marie tooth syndrome. All the women in my family on my mother's side has it.. but I guess I hoped the bullet would pass me somehow. Unfortunately,It didn't.
Slowly, I am becoming paralysed.. There are milder versions of the disease, but Our family has the full blown version of it. It's alot like MD or MS. My body's muscles will become weaker in time to the point I'll be in a wheelchair. I already have to get a cane so I can walk...at 33 years of age *Sigh

My title is about this.. My body may give out. I may lose my mind from the constant pain I go through in trying to do ordinary things. However, I am strong because I'm not gonna give up without a fight.

Take care everyone. It's good to visit here. :)
 
I am sorry to hear that :( Some diseases are indeed horrible, and sadly, without a cure :(

It's good that you're in high spirits and continue to be optimistic. I hope you will be okay and win the battle against the disease :flowers: God will also be by your side, so be strong!

Good luck, Tiffany! :huggy:
 
I wish I could be there to give you a big warm hug, Tiffany. Life can be really challenging but I hope you will stay strong. You stay strong, you hear me.

Whatever happens, just remember that your family and friends in real life as well as in MJJC will always be with you.

Stay strong my dear friend.

Big super hugs for Tiffany.

Regards,

JJ
 
Thank you so much,Rebirth. I gotta stay strong at this point because my whole life functioning is slowly going down the drain. Yet.. Even if my body becomes a prison, My mind is still free. *Warm Hug* I am no quitter. I'll keep fighting!

Thank you cryingangel *Warm hug* God bless all of you for your kind words to me and Your love and support.
 
Warm hugs Tiffany. Hold on girl, and be strong. I will keep you in my prayers.:angel::D
 
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That's horrbile :(..God bless you! My prayers go out to you. :flowers:
 
I'm sorry to hear that Tiffany, I'm glad to see that you are staying positive though, that's always important, stay strong. You are in my prayers!
 
*Warm Hugs*


You all know how to make a person feel grateful. Thank you so much for all of your well wishes.
 
I find it amazing that you are able to stay so positive Tiffany. And you're right, freedom of the mind is very important and has been key to the lives of many great people.

Wish you all the best:flowers:
 
I am able to be positive because today is a good day. On good days, I am able to move and be productive.
Bad days are another issue. When I'm in so much pain and I feel so tired, I find it very hard to be positive. I'm frustrated and unable to move much around my house. I'm depressed because it's like my body is giving up on me.
 
I'm sorry to hear about your condition. I am, as so many others, amazed by your positivity. You are an inspiration for many of us. Thank you.

I once worked with a lady who had MS. She had good days, and she had bad days as you so perfectly described it. Even though she needed a lot of help, it didn't stop her from doing what she wanted to do. Especially on those good days of hers.

I sometimes think that we have been given these bodies to "live" in for certain years. And even if the body seems to give up on you, you're still you.

Luckily we live in a time where we can get so much help and care that we can live adventurous and wonderful lives. I like to think about these things when I talk to or see other people who are in pain or when I worry about my own health.

I wish you all the best. =)
 
Hey there, I'm sorry to hear about your condition and my thoughts are with you. I hope that you are able to hold onto your wonderful positivity as it's truly a great gift and will help you keep going. I hope that you have friends and family members who share your positive personality too. They are a great resource to help pick you up when you're having one of the bad days :)

If not you have a whole community of wonderful people right here to offer you kind words and support :flowers:
 
Praying for you Tiffany. Your attitude will have a lot to do with your health and well-being, so keep of believing that you will be strong. The mind is a powerful thing.
 
I'm really sorry to hear this. :better: I'll keep you in my prayers, hope things get better for you soon.
 
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When I opened this thread I was thinking it was about something else, now I see that it's about your health condition.

You sound very strong and in good spirits knowing now what you have to deal with. With knowing that this could have been a possibility for you didn't make it better for you, I'm sure.

Keep up your faith and give it all the hope you can. You are certainly not "hopeless", you are being "victorious".

I hope that you get through this as well as you can and keep on having your wonderful viewpoint on life. Life never gets easier, we just have to learn how to cope and find the best way to love the life we have.

I will pray that God keeps blessing you with your upbeat spirit and please take it easy and take care.
 
All of you are an inspiration to me because I feel less alone in my battle to keep moving despite all the odds. I just talked to my doctor yesterday,and He is sending me back to a specialist. He wants to see what all damage has occured with this problem and how much its progressed. I'll let you all know what has been found out after all these tests I have to undergo.

Good days are tricky because I usually use them to get everything I need to get in order done. People think I'm healthy because I'm up and moving around even with pain or inflammation in my muscles. my attitude is positive because I feel I can make it on those days. It's the good days that give me strength,and I thank God above that he provides those type of days for me.
On a bad day.... I'm lucky if I can get out of bed. I can't walk or move very well. I have trouble getting a shower and getting dressed. The other day, I couldn't lift my legs high enough to get my shoes on without extreme pain. THAT'S a bad day,and unfortunately, It's happening more and more as the disease progresses through my body.

My family on my mom's side (The side that has the genetic disorder) are very supportive. They know what it's like. Other people have trouble with it because for now.. One day, You'll see me up and about. The next day, I'm almost bedridden in pain. I don't leave my home unless to see a doctor. I can hardly do anything for myself.

Through it all though, It is comforting to know I do have close friends and family who care deeply for me. And I do believe in God above all doctors. I can't give up now that I found the diagnosis.. and It's not a good one. I have to keep going.

Thank you all for your kind words of encouragement. They help keep me going as well. :)
 
Tiffany said:
:angel:.. I love the smileys in this place :clapping:


Hi Everyone!

It's been a long time since I have visited here. I'm very happy to see the people of MJJC thriving and doing well. I am trying to do my best as well,hanging out with old friends and doing some things I wasn't able to do before. I'm so glad to see you all. I hope you're well.

For years, My body has been wearing down. Last Friday,I heard from the doctor as to why.. and It turns out I have this rare genetic disease called Charcot Marie tooth syndrome. All the women in my family on my mother's side has it.. but I guess I hoped the bullet would pass me somehow. Unfortunately,It didn't.
Slowly, I am becoming paralysed.. There are milder versions of the disease, but Our family has the full blown version of it. It's alot like MD or MS. My body's muscles will become weaker in time to the point I'll be in a wheelchair. I already have to get a cane so I can walk...at 33 years of age *Sigh

My title is about this.. My body may give out. I may lose my mind from the constant pain I go through in trying to do ordinary things. However, I am strong because I'm not gonna give up without a fight.

Take care everyone. It's good to visit here. :)
Click to expand...

Oh my Tiffanny...I could only imagine this disease and what toll it takes on your body and soul. But you have a good attitude about it. You state that you are "not gonna give up without a fight". I just wanted you to know that I and everyone else are here for you. If you ever have a bad day, just come on here and we'll try to make it a little better for you.

You will always remain in my thoughts and prayers!

Take care. It must have been difficult sharing this with us. I am glad you did, if it helps...

Linda
 
It does help,Linda. All of your words and comfort are like a soothing balm to my soul and let me know that despite my body giving out.. I am free in my soul and mind. I can't give up now. It's just hard sometimes.

If I can get on here on a bad day, I will come here. Not to necessarily talk about this, but To be surrounded by such good people... It makes a real difference.


Thank you all :)
 
That's good Tiffanny. That'll be a plan okay? If you are having a bad day, we'll all be here for you. Especially me. Don't laugh...too hard...

me.jpg


:) :D

PS; I am studying to become an RN. I am always there to help you cheer up! Hope I helped!! LOL!
 
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my god tiffany ,,,,may god shower u with his light~!!! my thoughts and prayer goes out to u~!!! you stay strong and think positive!!! just fight for each day as it comes,,live each day to your fullist,,,,
http://youtube.com/watch?v=JVHNHvkf0Ss


heres a song that describes how i see u
 
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*Tears


Thank you so much... God... I am so touched and so blessed. I came back on just to leave my ICQ number in case anybody wanted to chat with me awhile.. and I found you both left me two beautiful songs that made me cry with gratefulness in my heart.

You will never know what all of this means to me. Not ever. God bless each and every last one of you* With all of my heart.

My ICQ # IS 376109454 I know yahoo is more popular but I do love Icq. lol

If any of you have it,Write me a message. I'll be glad to hear from you all.


Thank you for touching my heart so deeply*
 
:mello:

I'm so sorry to hear this.
This reminds me of how we should enjoy our lifes today and not concentrate too much on the future since we never know where we might be tomorrow, next week or 5 years ahead.

God bless you, Tiffany. My prayers go to you :)
 
My prayers are with you Tiffany!!!
I wish you many many more good days!

Yep it's when we cherish life the most, when we feel it's fading away.
 
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