To all my peeps out there I’ve been bad, bad to the core, as bad as Bad Santa, so very bad not blogging lately. Do I blame myself for not bringing you new information and sharing in TOS land or maybe blame the director since he has hands. Besides a RSI/TOS patient should not be doing this hand work, right? Blame me, blame the TOS, blame life. As Russell Brand’s great line in Forgetting Sara Marshall “Take my eyes but not the shirt”. tehe Better yet, blame Scarlett. As tomorrow is another day, right?
This POST is dedicated to all patients frustated & suffering who I have had the pleasure of talking with and hopefully passing on a glimmer of heartfelt hope
So, so many are suffering with pain, loss, confusion, anger, as I listen to their stories, their needs. After my 2003 surgery symptoms returned I panicked, saw a commerical on WebMd, went to the site and found a forum called Braintalk now Neurotalk. As my jaw dropped in shock, others had the exact issues. Look, look, its real, Wow, “the others” actually have it too. Being excited others are suffering like you? Yeah, but sadly no. And now my phone is on 24/7 for those in need paying it forward as so many others did for me. THANK YOU, thank you for allowing me to help, to give you a that glimmer of hope and peace knowing others do care along with true experts in the field.
Are you angry with the loss of a career, self worth, financial ruin, loss of life as you knew it? Is there ever peace, hope even a smidget of normailty again? Going out playing softball, soccer, ping pong, riding horses, bowling, running, training, graphics drafting, hairdressing, nursing, traveling, on and on and on… just everyday life or chores are insanely painful. Your life as you knew it maybe out the window however we have 2 sides of the brain. Your left brain can just push aside that ole right brain. It can, it seriously can. TOS is life changing, life challenging on a daily basis finding something to occupy and over ride the pain.
Does this sound all too familiar?
RSI, TOS, CRPS, chronic pain, RSD, Fibromyalgia, and all other conditions related are just absolutely exhausting? Maybe your just finding out “OMG I have TOS… whats that, now what?” Where do we begin, where do I find an educated specialist? O, all the tests after test after test, xrays, EMGs, MRI’s, the poking, proding, procedure after procedure, traveling from one doc to another feeling defeated. Deciding if surgery(s) are indicated, what is the right thing to do, is the surgeon qualified, who do I believe? The dreaded yet much needed drugs from anti seizure meds to numb the brain to opiods and pain pumps creating adverse reactions putting all giving u additional symptoms, trips to the ER. How about when meds dont even attempt to cut the pain, what do i do? How about “just stop the pain”?
We would ALL like to kick some serious booty. Attorney’s and insurance company’s do not care about you getting back on your feet, back to work, having a day without pain…if they did they would follow the dedicated experts recommendations, medical reports, journals and schedules. Not one medical shield required for them to make a decision on your life which comes along with a 3-5 page cut n paste standard document of NO’s? Whats wrong with this picture? Battling the lovely insurance company’s for much needed medical care who are absolutely purposely delaying decisions as 10’s of 1000’s are dealing with (how do i say this appropriately…o heck, just say it like it is) “selfish puppet” defense attorneys filling their pockets, draining yours? Having to educate & manage your case, being the squeeky wheel with ur esquire(s), sitting pretty in pain as denials are contrived without cause, long hours of appeals as years march on then finally trial. The patient becomes a pawn in their own games. All the while YOU are in such pain & discomfort you flare-up, shut down yet no one gets it. And geesh, how can we forget the paid-off dumb docs (IMEs even some AME’s), botched surgeries, more unnecessary attorney doc referrals which costs $10’s -100’s of $1000s in appts, procedures, scans, meds, o my. Imagine the % of patients would have been helped, cured or even back to work part time? Tenacity, determination, challenge, appeal, document, document, document and never ever give up nor give in.
WILL YOU, CAN YOU, PLEASE HELP ME
Then there is family and friends inability to be patient with sincere understanding. Try giving a newly diagnosed patient or maybe A-type personality (me 2-fold for sure) room for patience when debiltated, angry and scared. Do you sound like a broken record always asking for help with lifting, carrying, making the beds, picking up, organizing, cooking, driving to and from, cleaning up after themselves, shopping as the To Do lists grow longer? Well, that’s if you can even write. Just plain HELPing…the smallest of things. GOD forbid we ask for help as the years trail on, the understanding is out the window. Do you feel like an abused elderly person in assisted living? How about the essentials of showering, blowing drying ur hair, brushing ur teeth and hair, dressing or do u lay in bed for days, weeks not wanting to breathe or move afraid to awaken the giant realizing; I stink, the sheets smell and I suck, I hat this life, i cant do it any more? The software is full in our heads and hearts need mending. Does a close one ever consider after all these years never giving one thought; I didnt choose this life, the pain, the career loss, the, the…. therefore I wanna make u suffer? Ladies and gents…Get ur arse up and move, yes thats right move that circulatory system, get some H20 flowing, get to the experts, use hypnotherapy, eastern medicine, massages, steam showers, ice packs, heat packs. Whatever it takes DO IT. Check out this site OleCyn found so long ago…its awesome and u’ll love it: http://www.butyoudontlooksick.com/ “The Spoon Theory” is a must read.
Do you have those special friends who totally get? They really do understand? They remember the ole me, what you could do. How about you? A childhood friend has MS. She has such similar Neurological symptoms. We can totally relate on so many levels. Who would of thunk these beach goin’, flip-floppin, cheer and dance girls would have this in common mid life? One special friend, Sylvia has been by my side for 25 years. She calls me boo-boo. I tell her to call me “Broken Puma Paw”. Sylvia has personally taken me to the ER, heard the phone calls battling the insurance company’s, directing the doc office(s), the management how to make things happen simply, wiping my tears, calming me as i shutter in pain, by my side every minute through the big “C” thing right smack dab in the middle of this all, taken me out for a healthy meal instead of my husbands typical pasta, subway, pizza or hamburger meal. She even cuts my food. I would be a very wealthy TOSer for every dollar she has said “I don’t know how you do it. I would have given up looong ago”. We laugh and cry together till it literally hurts as u~all know. Blessings and grateful for friends who totally get it. I get it.
JUST DO IT
Is there a creative outlet you LOVE to do? Maybe it was a hobby, or #10-20 on ur bucket list. Maybe u r an expert in healthy living u can share with others, gardening, cooking a special family recipe. Yeah if we could only cook, lifting pots n pans, chopping, creating what our mind says we can do right? There has gotta be something that you can say, “that makes me feel good, that makes me smile, II can do that, people like me, they really like me. I can, I can, I did, I did it!” Then, JUST DO IT. If ur going to be in pain do something that makes you feel good to mask the pain for a moment, an hour. Focus on that giddy feeling again.
Today, i am teaching myself to actually blog, blog with a new layout, sound and visuals. If I am going to read blogs, decorating sites, healthy food recipes, sports, news… with all the eye candy photos & jewels which makes me smile why can’t I do it for you? JUST DO IT, oleCyn! Time to get my technically challenged inability’s “able”. And even though the computer is the devil in my case if it helps 1 person, I can smile. Yeah, maybe holding a dang magazine, book or newspaper turning the pages skyrockets the pain n’ burning then the motor skills start shaking uncontrollably. Heck, i dont even own a texting phone. Im lucky I have one in tact with all the dropping and breaking. So here i go..I can, I can “says the little train”. It may take me a while these days yet rewarding in the end. Saving drafts day after day is a good thing in this case.
ugh OOOOOO thought i was adding a fun header to the blog. Now our LOGO is gone…EEKS ok, its good now.
It is not our purpose to become each other; it is to recognize each other, to learn to see the other and honor him for what he is.
Today’s tune/video is COLD PLAY “Fix You”. Video kinda depressing yet gains hope and renewal. Chosen from the Live Strong Fight On SuperCyn mix for moi by our remarkable golly Ms Molly.