What do you want, when the time comes, and your loved ones have to say good-bye to you?
I would like a DNR to state that, if I’m brain dead, or need machines of any kind to keep me alive for the rest of my life; to donate every viable organ possible once I’m gone, to be cremated instead of buried, a modest funeral if any at all.
What do you want? Does your spouse/significant other, family, or close friends know? And if you don’t have documentation of your decisions, do you think they’ll have the fortitude to carry out your wishes?
Imagine that time being now, and your loved ones can’t come to agree on your departure. Are you married, a fiancée/fiance, a domestic partner, or single, etc. If you’re not married, your partner won’t be able to carry out your wishes, and your parents/family members will be left to decide. Even though you’ve made your wishes clear to your significant other; if they’re not recognized by law, they’ll have no say in the matter. Then will your family’s decision be from the heart or from the head? Will they be swayed by religion? Do they really know and understand what it is you truly desire? It’s a tough subject, I know…
I think about these things because I’m aware of my mortality, now more than ever. Dealing with a debilitating illness does that to you. You fight day in and day out to try and see things through those rose colored glasses so that reality won’t knock you down, as it so often does. I’m not saying I want to live in a fairytale, oh quite the opposite. I’m acutely aware of life’s trials and tribulations and that it is rarely what we dreamed it would be, as we did while we were once young.
Still, I strive to stay as positive as possible and always look for the good in people/things. Only some days are just simply more of a struggle than others. Each day, I put on a smile when I see people, even on my worst days, because I don’t want to bring others down with me, and I definitely do not want to be pitied! But what I do want is to be understood, appreciated, and liked/loved for the person I am, beneath the pain.
*a special nod to my friend “D.” We had this type of conversation recently ♡
Fibromyalgia… I have it, or rather, it has me, depending on the day. I’ve pushed myself too hard all of my life. I was Miss “I’ll do it myself“, if I wanted it done right. So now I pay the price! Oh yes, I also have a serving of arthritis on the side. What they originally thought was only Osteoarthritis, turns out to be Rheumatoid arthritis. Not to mention the list of other issues that seem to come at Fibromyalgia’s becon call. If you don’t know any better, you’ll think you’re that one in a million person, that has completely separate illnesses/diseases/disorders (I did!). But no, they are all Fibro’s gift to us. Kind of like a “Thank you for attending!”, but we aren’t allowed the option to decline the gifts.
Not knowing its exact reason for choosing me (us) is a bit frustrating! I’m able to check all of the boxes…
✔I have had childhood trauma/sexual abuse (a friend of the family).
✔the severe viral illness as a teen (strep throat).
✔the traumatic surgery as a young adult (emergency c-section).
✔the divorce in my twenties (too much to list).
✔the loss of a spouse/loved one in my thirties (brain tumor).
✔having to quit working in my forties (relentless bronchitis).
✔And finally, the complete loss of who I once was (beloved independence)…
And it seems that with each one I checked off, my pain did increase. Isn’t it funny how hindsight works?
Sadly, most of us have had significant others, friends, and/or family members who have left us to fend for ourselves. Because for many, this illness is just too much for them to handle. We only have each other – Fibro Warriors – to look to for love and support. Only a few of us are fortunate enough to have someone who will stick by us through it all. I am able to say that My Love has stood by me; together 10 years now, and I’ve been too ill to work for the last five. We both fight this illness, as well as fight to stay strong together. It can not be one-sided! If you’re not willing to make the effort, it’s that much harder for someone else to fight for/with you. Be the warrior I know you can be! I will proudly stand with you. And on those days you’re struggling, I will still be by your side… ready to lift you up if/when needed.
This is my life, my thoughts, my struggles…
I have more tales of woe. But I’m aware others deal with, or have dealt with, far worse than I, and I’m humbled by that. I’ll share more another day. Until then, always remember…
You are not alone! Love you all 💜💋
*Our podcast is released each Saturday on our ‘FIBRO Warrior, My New Normal’ Facebook page. This week, we discussed My Loves’ perspective on our fight with Fibromyalgia before and after my diagnosis. Thank you for listening, liking, and sharing our weekly podcast/biweekly blog/monthly vlog.
Listen to Fibrowarrior #6 – “My Love” w/guest Bill Jubran by FibroWarrior-My New Normal #np on #SoundCloud


FIBRO WARRIOR, My New Normal 
I believe you covered the tough stuff! I did get my Living Will on file into a system called “My Chart” the problem is different hospitals use different systems so be sure to have a Living Will (you can get at any medical facility or on line too I think) available before surgery. Otherwise I have one in my safe and my husband knows where it is and what my wishes are… this will over-ride any ‘issues’ at the time a DNR must be put into place. ~Kim
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Yes, I felt it was important. Thank you for that bit of info. I’ll add it to my description. Have get ready for my podcast now. But will track out again very soon. Have a lovely day Kim. 💜💋 MJ
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