LIFE = 1 ME = 1
It’s not about winning or losing in life, it’s about NEVER giving up and being able to LIVE LIFE! If you can put 2 feet on the ground and breathe, consider yourself Blessed. Don’t take the little things for granted. They turn out to be the big things that keep you alive…literally. Appreciate what you have, who you are, and those that TRULY matter around you. EVERY DAY is a gift. Don’t wait to unwrap that gift to appreciate that you have received it.
How do I stay positive all the time? I don’t. I used to be the one everyone else leaned on….then I guess they all ate too much because I fell down.
Last year I was upset and having a difficult time coping with the limitations brought on to me from having both POTS (Postural Orthostatic Tachycardia Syndrome) and Fibromyalgia on top of having Celiac, asthma of my esophagus (EOE), and having a TIA the year before. Then I WISHED all I had was Fibromyalgia and I don’t wish that on anyone.
Less than a year later I NEVER would have thought that all I would be WISHING for was “Just having POTS.” You see now my POTS (automatic disorder I call it) has attacked my GI system and IT’S “automatic” system. So I have to take an anti nausea pill every 8 hours, flush my body every day, pray I can maintain weight until I can get back to Mayo because all my specialists here have referred me because my case is too complex and my ‘automatic GI function’ has shut down (I’m trying to avoid the feeding tube because I’ve already been told it won’t fix it & a ‘new pill’ they tried actually had the opposite effect and I lost 4 lbs in one day…so they stopped that one of course). But I can’t get back to Mayo until I have an expensive insurance plan that will cover it. Each day praying more damage isn’t being done while I wait as they tell me.
Each day I am reminded to NEVER GIVE UP…that the little things are what is so important…like eating with your kids at dinner. We used to do that. We haven’t in almost 7 months. Walking without a walker. Driving a car. Going outside to get the mail or just sit; without assistance. Many have asked if I’m on disability. Like many, my doctors told me to apply right away. My pride held me back. Eventually, I applied and was denied. I was told I was being discriminated against because for almost 20 years I maximized what you could pay in for SS taxes. And so because I was so successful prior to falling ill; paying for everyone else; well I now pay for that as well…this time not just with the quality of life I have but most likely my life itself. I was told by my first case worker if “I was a truck driver of the same age, I would have been approved.” When I implied that was discrimination, I learned SSD is the one agency that CAN legally discriminate.
I even had to have one of my several specialists write a letter besides the FOUR other reports on file from my doctors with disability in my appeal file to PLEAD for my appeal file to be pulled because my body can’t wait the months’ backlog they have on appeals.
Yet I still search every coherent moment on a ‘good day’ I have for the blessing of receiving these battles. Don’t get me wrong I feel TRULY Blessed for the opportunities I have had. I accomplished more in my life than most may in a lifetime. And anyone that knows me knows I have always lived with gratitude; consistently saying I was blessed. One of my employees once gave me an air freshner for my car that said ‘blessed’ because she said I said it so much. But I feel I have so much more I could share here, more that I could help others with. I feel this battle is not for me. Maybe it is for me to share? Maybe it is for me to inspire others? Because let me tell you…if you’ve ever joined an online “support group” you know what I mean when I say: that I don’t need thousands of others telling me what I have or what I can’t do…I already know those things and that’s not supportive. Maybe Social Security should join the support group, haha. ?
I pray every day for God to show me how I can serve. Unfortunately I also lose days at a time….slept through, incoherent, unresponsive my family tells me. Thats when I feel robbed and its hard to find the positives. But atleast God blesses me to not remember that time lost. And although I may be in another time or place; he relieves my pain and sadness and still keeps me here. Here to eventually wake up to this.
So yes, maybe my days are outlined and numbered a little more than others. But whether you have a disability or not; CHERISH what you have. Yes, I watch my children as in slow motion… absorbing their giggles, watching them sleeping, even their bickerments amongst each other. My family keeps me fighting. The LITTLE things keep me fighting. LIFE tells me to NEVER give up.
If you look for the positives, they will come. Even bickerments will allow you to learn about each other, if you hear not just listen. It doesn’t have to take a tragedy to bring your family closer but if a tragedy does happen; you are not alone. Learn to lean on others…most likely you weigh less than them and won’t knock them over…or let them sit on you like my daughter did here. I have definitely learned to treasure a ‘good day’ and that laughter truly is the best medicine.
Bless your gift of life today with fulfillment, joy, and the little things.
If I can inspire just one person each day, whether it is a good or bad day for me; I am fulfilled.
XO Always,
Jacque “JG”