just checkin' in

Joy · 03-13-2008, 09:32 AM

Hi everyone, I think about you guys all the time and pray and pray and pray for us all. I think I've started premature inscanity. I have them on the 26th. I just worry too much about when t/x will stop working and what will have to happen next. It is so dumb, but I really don't want to lose my hair again so I keep looking for non-hair loss options. Having been dating someone for only 3 months it concerns me. ANd my kids will be making huge transitions to new schools next year and I just get sad and afraid that I won't be there to help them through that. It is the thinking about the future thing that gets me all jacked up about even having a future with these girls. I did not have them to leave them (I know you all are there with that too). oh man, now I'm crying.

My blood work has been perfect and I have another draw today as it has been 3 weeks. And I'm so grateful for that. I've had this crazy right side pain that has freaked me out for several weeks. The doc and the NP are not worried and I'm pretty sure it is muscle related.

How come when things are going so well I worry the most. I just don't want to give up good things. I left my daughter at her new school for next year this morning to shadow the class she will move into and she had big crocodile tears when I left and then I lost it in the kitchen there all over this woman I know. I felt like an idiot. I can't stand the thought of her facing things without me.

I, like everyone here, just want to show this disease up. I don't want it to take me so early. I just can't help but worry about when the options run out or when my body just says, "Enough!" I mean really how much toxicity can our bodies take? I'm paralyzed by this in that I can't even think of the future in a planning kind of way.

I guess it is just an emotional day and I'm so glad you all are here and i know people are facing bigger challenges than I right now and I don't mean to diminish that or be disrespectful to anyone. It is just where my head is these days.

Thanks for listening. When I sat down to write this I really didn't think that it was going in this direction-sorry, but it must have been needed. I love all of you.

Leslie's sister · 03-13-2008, 10:26 AM

Joy:

I always look forward to reading your posts. You are full of life and it jumps out from everything you write. I always celebrate with you, knowing you are enjoying life so much with your children, new boyfriend etc. Of course you get scared and have rough days as well. Please know that I am praying for you. Praying that your scans are good and you continue to enjoy your life the "Joy" way!!

Lisa

Karen W · 03-13-2008, 10:44 AM

Joy,

Stay strong and always remember that we are all praying for you.

Hugs,
Karen

Mary Jo · 03-13-2008, 11:51 AM

Hi Joy,

I'm so happy to "see" you again. I always look forward to your posts....................You are honest............not afraid to let your feelings show..........but STILL............your "JOY" fills your posts.

Oh I understand how you feel when you say "why when things are going well do I worry the most?" Isn't that the truth. I think it's the "waiting for the other shoe to drop" thinking we get caught up in, right?

I'm so happy things are going as well as they are for you. I pray that your scans will be PERFECT and I will ask God for nothing less than PERFECT.

Love to you Joy and asking God for His peace and calm to fill you as you wait.

Mary Jo

Missyw · 03-13-2008, 12:02 PM

Hi Joy,

I have read your posts in the past and they have brought me so much happiness. I hate to see you so upset, but I can certainly empathize. I too have school aged children, I too am stage IV and I too feel overwhelmed at times. I feel such envy for those of us who got to see their children grown, married, graduated ...whatever. However, I also hold on every day as I know you do to the hope we will see those milestones and more. Every day as we wake up someone somewhere is working for our cure. Every day we read of their positive developments as they inch closer to our miracle. We have to do our job to stay strong while we wait. Just remember you are never alone in this. We are all here for you and our sisters. Hope it helps.
Missy

Barbara2 · 03-13-2008, 07:04 PM

Joy, why not try putting on one of the heat type patches to see if that lessens the pain any. I often do that with my aches and pains. I always keep those patches on hand, in various sizes.

Stay strong. You're doing great. Saying a prayer for you...

sassy · 03-13-2008, 07:27 PM

Joy,

If you can't "let it all hang out" here, then where? Nobody else can understand like the people here. When you get your wonderful news on scans, calm will once again descend and life will be peaceful once again---until scan time. Unfortunately, it seems to go with the territory.

You are in my thoughts and prayers.

Faith in Him · 03-13-2008, 11:54 AM

Hi Joy,

I feel you. I am a mom with two young children myself and I am scared also. I think it is good that you can come here and let your feelings out. Don't feel ashamed if you lose it. We are on a very rough road and with young children to raise, it can be very difficult.

Remember that you are very strong. I read your signature and I am amazed by your fighting spirit. I am praying that you may have some peace today.

Hugs,
Tonya

jones7676 · 03-14-2008, 06:43 AM

Joy,

I sure can understand your fears....had a friend tell me not to be a worry wart, but I know it is hard. Just keep trying to stay positive.

I also always look forward to your posts. It is nice to hear that you are dating.

I wish you great scan results.

Hopeful · 03-14-2008, 06:55 AM

Joy,

I don't think anyone here is unfamiliar with what you are describing. I am also reticent to plan more than 6 months ahead. This disease is much more about mental strength than physical endurance, something I never understood until it happened to me. Nothing is more awful than to have your future taken away. I, too, often find I am afraid to "let" myself feel too happy, because I can't bear the thought of having that happiness taken away again.

We just need to adapt to living in the moment as best we can, especially when scan and blood test times come around. Much easier said than done, but no use to start mourning in advance when you don't know what the outcome will be - it is a poor use of a perfectly good "present" (as in, "the present tense").

Best of luck to you with your upcoming scans. I'll look forward to your post letting us know how you do.

Hopeful