While I haven't lost friends due to this, and my husband met me after I was already sick, I do so understand that fear.

I have had to cancel playdates for my daughter due to being sick and she doesn't understand although she has seen more in the last two years of this than the first 5 of her life it gets to be too much sometimes.

I have gotten to the point where I fear going to my doctors, in the last two years every appointment has brought a new medicine or new diagnosis to add to my problems....at first I remember being terrified of going blind, then I feared feeling better when I had my shunt put in (I had already been diagnosed for 3 years, what if it didn't work?) when it failed I was scared to death and for good reason with all thats happened since....Fear is REAL, and its ok to feel that need to share it....

Here, I am sure everyone of us has shared that fear, I have even had it when my daughter got sick once (she has only had a few colds and NEVER been sick except this once) she had a very bad headache and cried for almost two days straight, I totally freaked out, Hubby could not console me or anything, the only thing I could see was her having to suffer too, At least while I was worried about her I didn't feel my pain at all, but I feel even worse for our two new moms on here....My mom suffered even more by watching her baby being sick while they searched for a diagnosis....I am glad they are now finding it younger in children so parents don't have to suffer the "knowing my child is sick, but not a clue as to why"

Ok, I wrote a novel....but yes, I feel that fear often, and it actually got much worse after I was granted my disability in early May.

Charlotte

OMG MM3 I have been feeling that way so much lately, fear that may new shunt won't work and I will suffer the rest of my life, won't be able to ever work again, or if I can, I won't be able to find a job I can do and yet still be excited about going to, feeling guilty that my friends don't ask me to do things anymore, that I can't do fun stuff with my hubby, terrified that I won't get better and be able to travel to see my Mom before it is her time to leave this world, jealous of my sisters who gets to travel all over..add on top of that fear that my kidney transplant won't last long, be on dialysis for 10 years while waiting for a new one, then be considered too old for surgery..you name it, I fear it.
that said I don't want to live my life in fear or be afraid everday, I'm working so hard on not having that happen by getting a lot of help, but still the feeling comes up strong.
I remember you told me something that really helped me when I was so depressed...that those voices..the ones that tell us we are no good, the ones that make us feel guilty/fearful are just the depression talking, it is not our true selves..and I try and think of that everyday.
My dear sweet MM3 you are one of the bravest, kind, giving, joyful, wonderful woman that I know...you have been through so much, it is not you, it is the normal feelings everyone goes through who has a chronic disease (or any disease for that matter). I try to telll myself that his too shall pass and I delight in your you-ness that is a gift to this world, esp. your family. Jazzy

Remember the scene in "As Good As It Gets" when Jack Nicholson says to the people in the phychiatrist's office, "What if this is as good as it gets?" And then you see the looks of horror and despair fall upon all of the patients. We are like that.

This disease makes life really suck, and we all wonder if it will ever get any better. And if we are lucky enough to get better, we wonder if it will last. It is tiring.

Be kind to yourself, MM3. I don't believe for a minute that you would be as hard on anyone else as you are on you. Be forgiving and understanding that you just aren't where you used to be. Then try to stay positive and hopeful that you will be there again someday.

Hugs
Bax

I can certainly relate to this as well...like Bax said, this disease really does make life suck! As much as possible, I try not to let it control my life, but that's especially hard when the pain gets unbearable and you can't do anything. Already it's caused me to let my kids down more than I care to think about - they really don't get how I can have such bad headaches so often, no matter how many times I've tried to explain this to them. All they understand is how much I've let them down - not taking them swimming because I can't bear to sit out in the hot sun all day, or not enrolling them in activities that require lots of driving back & forth because I don't know if I'll be up to it or not...canceling other plans because I was feeling really crappy, etc. And yes, my job has suffered, our homeschooling has suffered, everything has suffered. It's really pretty miserable.

I'm SO sorry you're having a bad day and hope that you get to feeling better quickly!

Thanks guys for the support as always its good to know I'm not the only one while at the same time of course I don't wish the same for any of you. I laugh because as I was reading your messages of support my mind went off to another place...my daydream went kind of like this...

We all live in the same remote area and meet several times a week to check in and see what's going on in our PTC lives. (Of course some of us don't show because we are too ill to make it.) For those of us who do show up, we always end up going out to a bar somewhere for drinks to ease the physical and emotional pain. Several months later....

We start meeting at another group called Alcoholics Anonymous. LOL. Good thing we don't live too close to one another!!! I for one don't drink and certainly don't like to drink alone so the fact that we are spread out like this is a good thing. LOL

"As Good As It Gets"...Good movie. I am tough on myself Bax...you are always insightful at bringing that to light when I forget it. In particular I'm having a difficult time with it today. It's a perfect afternoon. 73 degrees, not a cloud in the sky, gentle breeze and I have a headache and a numb leg. I can barely move. The neighbor kids are being brats and my kids are in the house. Typically I would rescue my children by taking them to the park, but, obviously I can't. When they are grown with children of their own these will be days I can't get back. I only get so much time. Thank God my husband is washing the cars so the girls are helping out with that...and apparently my youngest has befriended a particular moth. LOL (Hope she doesn't bring it in the house.)

Thanks for the love.

MM3

Monkeymom -

You just really cracked me up!!!!!! Thank you! You have an amazing sense of humor!!!

Anyway, I've never been very good at putting words to paper (so to speak) but I feel compelled to tell you that I think you are a pretty amazing woman. I read a lot of your posts and you are always so supportive, helpful and caring. I think your family is very lucky - they have you!!!

Please take care and hope you feel better soon!
Angie

Thanks Angeline...I really needed to hear that. (Especially now.) I am actually in a tremendous amount of pain right now. i can also feel tremendous pressure behind the right eye. Dilaudid is barely helping so, not sure what tomorrow will bring. Crying a lot. Your words of support are really lifting me up right now. Thank you.

MM3