I just cant do it anymore....

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Comment by Cindy on March 23, 2012 at 9:22pm

Prayerful Girl,

Wondering how you are doing. If you check your emails, drop us a note so we can check in on you.

Thinking of you.

Cindy

Comment by typqueen on March 23, 2012 at 5:56pm

I just read your blog, and I want you to know you will be in my prayers.  This illness just stinks so badly, and the people it touches seem to be some of the nicest people in the world.  None of us deserves to be in pain all the time, have our lives totally interrupted and changed in an instant.  My heart breaks that you have small children that need mommy.  This will make them stronger and they will have empathy for others when they grow up.  I'm glad you have a supportive husband.  I do too, and I'm blessed by him beyond words.  My daughter is older, so she is able to be a help to me, and I'm thankful for that.  Unless someone has this pain, they can't even begin to say "yea, I know how you feel"....puhlease.  My mother -in-law has TN and she has been a huge support for me as well.  I wish you all the best and you will be in my prayers.  

Comment by prayerfulgirl on February 23, 2012 at 1:28pm

Thank you all soo much for your replies to my Blog, I am in tears from just being thankful that ya'll understand and help me.. everything that i read helped me feel a bit stronger. Thank You!! Also today I am OK, i have days like I wrote about around 3-5 times a week but today... I am ok, thank you for telling me im not just an addict, i truly needed that! thank you thank you!

Comment by Stef on February 10, 2012 at 11:34am

Dear Prayerfulgirl,

I hope that you come back and respond to your posting.  As you can see, you have an outpouring of support here!

I just wanted to drop in to tell you that reading your letter hit home with me.  In your first line, you say, "everyone I love suffers when I'm down".  Right then, for me, was like looking in a mirror.  Every time I walk in my pain clinic, I pray for the doctor to write out enough medication so that I may have relief because my family will suffer if I do.  My husband and two daughters depend on me!

"Mommy's always sick".  I know.  It breaks one's heart.  I've heard things like that again and again too from my kids.  It hurts.  

I am a "prayerfulgirl" of sorts, myself.  Facing each day with this pain, sometimes, can seem like a mountain.  The only way I can get through it is to climb each day at a time, like one mountain at a time.  I do this with a combination of prayer, positive affirmation, and the knowledge that tomorrow is another day.  Sometimes, I find a medication which works better for awhile, until I gain a tolerance.  When this happens, I can enjoy life, my children, etc.  I really ride it for all it's worth, and I wonder how many people can say that.  I wonder how many people treasure moments with their children, which are pain free, as people like us do.  I do.  If I have a night when I can enjoy my girls without hurting, I'm soooooo happy!!! :) :) :) :)

I need strong pain medication, stronger than any doctor wants to sign his name to, in fact, to control my pain.  I am not ashamed.  I am not an addict.  I'm betting, you aren't either.  Yes, there is a distinct difference between tolerance/dependence and addiction.  I'm addicted alright, addicted to a pain free life with my family - that's it! (not taking pills that I know are doing my body harm, but are a necessary evil).

Oh, I hope you write us back, and I hope you're hanging in there!  Yes, TN is a monster, but the human spirit IS stronger.  Doctors don't seem to understand.  I wonder if it is a doctor who has made you believe you are an addict when you are the type of person that they MAKE the medications for.  This is a VERY common problem today in the United States, and as I'm finding out, many other places all over the world.

It sounds like you have a great husband to support you.  I'm very happy for you for that.  I certainly hope that you find some peace.  I cry some days.  I cannot believe what's happened to my life, my dreams.  I worry for the future of my children.  But, the good times, oh they are so good.

I related so much with your post, that when I read it, I didn't even know where to begin with my response.

You mentioned MVD.  Many people with Type I symptoms have been helped, sometimes for an indefinite amount of time, due to the surgery, is what I've heard from patients and read.  I do not have Type I.  I have read that it is rarely effective in the treatment of Type II patients.  (keep in mind, we're not doctors . . .this is just what I've heard/read and am no physician, of course).

Well, I'm going to go rest up.  Any Mom who is coping with TN I, or II, definitely needs her rest.  I hope that you are getting yours, and are not beating yourself up, or labeling yourself an addict for taking meds that it is very likely that you need to maintain quality of life and the abilities you need to care for your family.  If you feel that you are truly addicted to the "high" of the medication, though, that would be a reason to seek help, in my opinion.

You will be in my prayers for sure.  Through reading your post, I see a kindred spirit, I believe.

Hang in there and turn to prayer yourself.  I love your screen name.

((Huge Hugs))

Stef

Comment by Jackie on February 9, 2012 at 4:24pm

Please take a moment to write in and tell us how you are doing. It is such a long time since I have seen so much love poured out to a member in despair. There are kind people in the world and many are members here.

Comment by Dale on February 9, 2012 at 4:17pm

Prayerfulgirl, how are things going today? I hope you've been reading the suggestions and positive responses from your friends on here. Yes, we are all in this together. How much better is a friend when they really DO understand? This website has a ton of good info. Just maybe, there is a doctor in your area that comes with a recommendation from a tn friend... Dale

Comment by Cindy on February 9, 2012 at 10:40am

Prayerfulgirl, thinking of you. Many of us have been right where you are. I wonder, too, how to live with this bear for the rest of my life. It does effect my family as well. My current neurologist treats it like I have an ingrown toenail. I don't believe he understand the harshness of this syndrome. I'm thinking of you. Hoping you can find that our compassion and understanding of this will give you strength. Praying for you!! Let us know how you are doing. OK?

Comment by SF Bill on February 8, 2012 at 11:15pm

Hello prayerfulgirl

I haven't stopped  thinking about you.. How are you feeling today?

Comment by Vicki Dvorak on February 7, 2012 at 4:55pm

Hi Prayerful Girl,

Like everyone else I feel stumped about what to say, but wanted to let you know that I feel for you and that you are soooo not alone in this!  Wish I could take your pain away and give you some great solutions to resolve it.  I am just hoping and praying they come up with a cure or atleast significant ways to deal with the pain in our lifetime.

Do you have good friends or family you can vent to, cry on, scream out loud to?  I'd be happy to be a sounding board if you want to give me a call.  Just send me a message and I'll pass on my phone number.

Big hugs to you, Prayerful Girl. 

~ Vicki

Comment by Jackie on February 5, 2012 at 5:32am

No advice, just to let you know we are all still thinking of you and sending our best wishes that relief will come to you soon.

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