Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.
Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.
(I know some of you know)
Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.
My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …
Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…
I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!
A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..
Invisible diseases are even invisible among the very people they should be acknowledged from.
Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.
A time being can be minutes, hours, days, weeks.. there is no absolute!
Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.
I’m not in remission! I just understand those who are.
Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…
When you think you’ve had enough and you can’t go on…. Go On!
Don’t ask me how I do it..
Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…
Or how I take care of my grandson…
Don’t ask me about me..
Don’t even ask me how I lift my eyes..
Just know that I do..
(But he leaned in and whispered it might be worth it)
I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)
Very inspirational, honest, and grounded entry. I really enjoyed reading it this morning. Best of luck from Brian, a 46 year old RSD’er who is fighting with the depression of losing my military flying career as well as all of the fun things such as scuba, surfing, etc. We can’t give up the fight!
Have a great day, and keep on keeping on! Take care!
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Thank you for your post! You are so right, we can’t give up the fight. Please keep fighting! Do not give in. I truly know how hard it is. I don’t know from your personal standpoint in losing your military flying career, but I do know from the loss, depression and RSD perspective. And with that I hope you find comfort and ease. Please feel welcome to keep in touch! Sending warm wishes your way. ~Twinkle V.
Thank you. ❤️
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Thank you also! x