My Tribute To Those Who Suffer With Us

    It’s hard to believe this incident happened almost 11 years ago but it has been that long. Hubby and I were taking a very late evening stroll as close to the Colorado River as we could get without risking falling down into it.

     The cool breeze through the trees of the campground was wonderful after the hot day. I was thinking that I wish my health would get better so we could start saving money and retire one day to live this lifestyle we were just getting a glimpse of. 

     My retired parents had a motor home and had invited us to travel with them for 2 weeks. We flew out to Phoenix to meet them and drive back home. They had been out there for a few months.

    

Hubby must have been reading my mind because suddenly he stopped, turned me toward him and said just what I had been thinking. I got very mad!!! How dare he say that I didn’t need my medications!!! How dare he say that I’m not in pain!!! How can he expect me to stop the very medications that were fighting back the lupus and Sjogren’s syndrome that ravaged my body every day!!! Stop my insulin!!! Does he want me dead???

     The rage I felt melted quickly and all I said was something to the effect that I would stop the medications if I could but I can’t and live. You see he was just giving a very polite vent about how things were going and he’d like it if things changed too. My medical bills were increasing every year but our income didn’t increase.

     This is a fact of life for those of us who live with chronic pain/illness. Our pain/illness doesn’t just affect us. It affects the whole family. This is a tribute to those spouses and kids who chose to stick it out with us.  This is for all of the spouses who have stuck around with us and tried to make a good go of our new lifestyle even though they don't like it and most definitely had other plans.  This is for all those spouses and children who have rearranged their lives around our needs. This is about all the missed vacations or just weekend trips to the beach because Mom/Dad doesn't have enough pain pills to go do that and we won't leave her/him home alone.   This is for all the missed school events and missed vacations simply because Mom/Dad hurt too bad to get out of bed.  This is for all of those out there who love us even though we get fat and start to walk "funny" and slow like we were our grandparent instead of us.

     Some of us need canes or walkers and even wheelchairs to just get from one room to the next at home.

     This is for all of the spouses who suddenly find themselves the sole support of the family while hoping the other one can get SSD or any other type of income soon.  This is for the husbands who find themselves doing housework after working all day and for the wives who find themselves working all day and then doing all of the housework plus the yard.  This is for all the frustrated times we've unfairly raged at our spouses and kids when really we are raging at AA but they "turned the other cheek" instead of replying in like manner.

     Sometimes we do tend to forget that others have to change their plans in life just to stay with us and they do this simply because they love us. How many times have we had to eat at home because the dining out money was spent for medications? Or even worse have had to decide between food and medicine?

     This is for my husband who worked all day and still had to fix dinner when he got home.

     What was I doing? I was writing this. Why did I write this instead of getting up and fixing dinner like I wanted to do?  I wrote this because my legs won't hold me up to fix dinner and I haven't learned how to do that from my power chair yet.

     We are both hoping and praying that getting my pump catheter fixed will make these problems and much of the pain go away again. We are both hoping and praying that nothing goes wrong with the surgery and things don't end up being worse.

     This is for all of the wonderful, loving people in my life. Thank you for being you. I love you.

Wanda

Comments

[Colin M. Sullivan]

Darn it, Wanda, this is everything I'm currently writing in my new post; now I'll have to start over!
To answer fisrt your statement to my question, "Is it worth the hassle?" You just answered it. It sure is when you're in a loving relationship and have found ways of giving back the love you receive. I've been hiding. Sorry for not writing more often; I've been in a pain spike for weeks and in my style have ignored the best advice I've offered to others. Thank you so much for writing this piece. You've cracked through my shell of isolation. I feel like a jackass for not saying to my loved ones the things you wrote so beatifully. Thanks and God bless, Colin

[Anne McGill]

Brava Wanda!!

I couldn't have said it better myself.

Anne

Dear Wanda,
In both of your recent posts you have really touched some key issues. Thanks you for expressing so beautifully the thanks we need to give our loved ones and the important part they play in our lives. Please know you remain in our prayers and we'll be thinking of you as you go into surgery. God bless you, thanks for taking the time to post on these important topics and heal quickly. May your adjustment to the new pump and getting the medication go smoothly. Breathe in Peace Kathy S.