OK, I promised you from day one that I’d keep you apprised of what’s going on with my health and, to that end I speak to you today. I missed yesterday’s post because I was at the Doctors consultation for my immediate game plan. If you haven’t been following my blog I have a little disease called Chronic Inflammatory Demyelinating Polyneuropathy (C.I.D.P.) It means the myelin sheath protecting nerves is deteriorating, causing the nerve endings in my feet to slowly die a painful death. Right now my feet are in so much pain, and balance so of course, that I can’t walk a block without assistance of some kind. And the act of walking itself is extremely painful. I have recently undergone three non-invasive spinal surgeries, basically, injections directly into the spine to reduce swelling and increase the flow of spinal fluid. Well, turns out, the sheath is deteriorating faster than anticipated and the recommendation on the table is this. The picture above is what they are suggesting be surgically attached to my spine to slow the deterioration of the myelin sheath but mainly to reduce pain, thereby increasing, quality of Life. And so my friends such is the state of affairs that is my life. I’m sure there will be plenty more to come on this subject, for now, I am considering the point, actually, I realize that this is something must be done, it’s just that I need a little time to get used to the idea, is all. Thanks to you all for all the emails and warm wishes over at Cosmofunnel…… I look froward to you ALL………….
Quality of Life is a big thing, right now I have to spend, at least, 6 hours in my bed, with my legs elevated for relief from pain and to promote blood flow to my feet, each day. Lately, the pain has been so bad that I spend at least 10 hours a day with my feet elevated, just for comfort. Pain really is the mind killer. (but I’ve already gone into all of that) What really sucks is that I don’t get to outside much….so when I do, the first hour or so seems very surreal. It’s strange. Anyway, take a good look at the picture above, that is a spinal cord stimulator, and my doctors and surgeon are suggesting I have that thing attached to my spine, look at the picture again, that little box, lower left, gets sewn under the skin at the top of my right butt cheek, it’s the twelve year battery. In the pic you can see they are attaching wires to my spine and then will be sending little bursts of electrical stimulation to various locations, for twelve years. Now, I don’t know about you guys, but I was not thrilled at this news. In fact, I told them I needed to think about it. It’s such a bizarre and invasive thing, it’s hard to get your head around it. I mean LOOK at that contraption…..it’s visually intimidating. So now you have an idea of where I’m at with this “condition” of mine. Our hope is to be able to cut pain in half, and afford me the freedom to move around under my own power. This part of “Quality OF Life” may just be worth the risk of having them install this thing in me. My life would be so much better if I could go to the grocery store on my own. Be good for my self esteem as well. Look at myself, talking me into it. Do you know how much this operation will cost? Do you wanna know? Of course you do, because the next time you see me playing my guitar on some small stage somewhere, you’ll be in on the secret. You know the secret……..Tony’s a Cyborg!!…..the total cost for this procedure is $20,000.00…that’s a lot of cash…….Unfortunately, my insurance happens to pay for this procedure so I can’t wiggle out of this……regardless of everything, right now I need to sleep…….I do my best thinking just before dreaming…..it’s very meditative…..reflection at it’s finest really. That place where you float. the place where you learn to control your dreams literally. Any way that’s for a different post. Today we toast to friends and successes, I think there’s gonna be plenty to go around. I am Dartanion2 and that’s the way I see it………….cheers………t xx
Alice Lawson said:
Dearest Tony, thank you so much for taking time to share with us about the details of your health at present and the spinal stimulator and your feelings about it. Prayers are continuing. I trust as you come to a serious decision to accept the benefits as worth the risk of this implantation that total peace will be yours and courage to endure this operation. Quality of life is very important and to be up walking and playing your guitar again will give you better circulation also to your legs and feet all this to hopefully to offset all you have thus far endured. Bless you for sharing with the educative heart to allow us to understand your journey and allow us to come along with you supportively and cover you with prayers and wish you well. You are greatly loved dearest Tony by so many friends and family. Rest well and may your dreams be sweet and the Spirit transport you and fill you with greater peace and healing virtue from the Lord of life and Father God’s gracious love and healing hand be mightily a part of this experience unto setting you free to move and live in a quality way once more. Love to you with all my heart dearest Tony from your Kate hugs and the kiss of Father God be yours.
Hi Kate, I know how much we’ve talked in the past about having faith in God and you know that you are always in my prayers as well. I’m glad you made your way here, it’s so much easier to communicate……..seems like I was always missing you before this. Justepals really did me a huge favor when I first met Katherine Louise……who knew we would still be in touch……God has a plan………..thank you Kate………t xx
Alice Lawson said:
Divine appointments are from His heart to ours for a purpose and for growing and for blessing. I see you flowing into your sons lives and that was spoken and shared many times. The hand of Father God has been pressed against your chest in four distinct movements. Each was for a strong testimony and divine purpose in Christ as High Priest and Lord of Lords in His authority you shall arise and live more completely with greater joy and release. He is the Alpha and Omega and bright Morning Star. It is by and within His light you shall arise and move and have your being ! No greater love is there than His and His gracious Fatherly embrace are yours along with His perfect and tender Fatherly kiss on both your cheeks. This shall be the legacy of your sons also. With His great love and tenderness upon you now and always may you find His perfect peace in all this. My heart shares what He alone could give to you and also upon the blessing of your Mom and Grandmother in Germany waiting to turn 100! To your siblings shall also receive great love outpouring upon them and their families they love and Isaac your friend is sheltered and will receive a good portion of his own upon him as well. Blessings upon blessings because He completes the good work He has started in us and bring it to fullness and a fruitful beautiful end in Himself. Great delight and joy awaits you dearest Tony in this promised arising and what it will accomplish. Even as you are soaring in spiritual areas so shall this evidence of your experience bring delight to friends and family to see you arise and live out your destiny and shine for Him ! Love from your Kate in His holy hug as I send this to you dearest friend beloved in the Lord dear Tony.
Georgina Richardson said:
I really don`t know what to say to you about this latest news T` but my sixth sense is telling you to go for it sweety. You have been so marvelously brave throughout all of this and have still written with such a positive and sensible attitude that I know deep inside that you can do this honey and I want you to know that I am here with you every step of the way. I just wish all that water wasn`t between us so I could hold you in my arms and tell you that I love you and be there with you, you can do this I know you can darling. It sounds like an amazing piece of kit T` the electricle stimulation it gives, will that cut out the pain and will you be able to feel it working?? I wish I could have been there with you at the consultation as I have got lots of questions firing off in my head now.
This news is good news T` it`s positive news and it`s hopefull news, it shows that the Doctors are working hard for you and have finally come up with a solution to help you, I knew that they would finally figure it out. I feel strongly that this is all going to turn out well for you honey, but I`m not the one who has to make that decision and it`s a big one isn`t it? I know you are sensible and that you will think about this carefully and you have Isaac there with you who I`m sure is a great sounding board for you, so just take your time sweetpea and just know that I feel it`s the right thing to do, you know I trust my sixth sense don`t you. You are in my prayers sweety and you know that I love you don`t you. You have explained this procedure very well, have the Doctors said what the results of this procedure have been with other patients and how many have they done on other patients. It is incredibly expensive and I`m so glad your insurance does cover it honey.
I love you
Hey Georgie, I agree, I will take my time in deciding however, time is becoming a factor, Doctor is sending me literature and a dvd of the procedure so, that will help. I think I trust more in your vision though!! Yes, I will be able to feel it working, we hope to get 50% reduction in pain……that would be Awesome, also slow the myelin sheath from deteriorating……..thanx so much sweety……..smiles …t xx
I hope all goes well.
you are important to
who is this?
wow Tony. I’m sorry you are in pain. Keep writing my friend and believe in positive energy. Remember every decision you ever make is the best decision. You are in my thoughts
Hi Bahar,, so glad you made it here my friend…….thanks for your kind words…….see you around the cosmo pages……tony xx
Thanks B, positive energy is the key to the UNIVERSE……I’m with you B…….later…..t xx
Cherie Sumner said:
Dear Tony, I look at that picture of the spinal cord stimulator and the first response is “Oh wow, that would be placed on a very delicate dangerous area of the body.” I worry about if something dysfunctioned. I do not know what is involved with the device. I guess the DVD will do a very thorough job of explaining it to you. I would want to ask the doctors the risks involved. If you sustained an injury, would the device be affected? What about the battery? It lasts 12 years…does it work flawlessly until that time? What happens when it stops? 50% reduction in pain does sound so delightful for you to have. Because I care about you, I would want to be sure it is a safe device. The doctors would have to be very specific how they placed it on your spine. This is all ‘new fangled’ technology to me. Lol….I do believe you should pray about it and get yourself as educated about the device and procedure as you can, so you feel comfortable in whatever decision you make. I really want to see you feel good and know what all your options are. I will be with you with support all the way with whatever you decide. I know how cautious you are and intelligent in your studies. God bless you. ((hugs)) Cherie
Cherie, you have reiterated to me that which I seem to need only be reminded…….you’re right of course, just take my time……learn everything humanly possible……and then make an educated decision……..I know you’re right……i’ll probably feel a lot more comfortable in about a week…..so, no need to stress now!!……thanx for always being there…….partners in foot pain……….thanx Cherie……..t xx
Giggles the Poet said:
Hey my robotic twin……I got my simulator in the drawer…lol
That’s a great thing to do with it Angel…lol To have found this echo….here….at this time…freaks me out….I wore the device for 7 yrs too long…malfunctioned leaving me paralyzed, until SOMEONE unplugged the device…my body collapsed, I fell to the floor as electricity ran rampart through my body….and nothing was done….I was quiet for thirty years….hmmm..took a lot of training to break out of such an ugly nightmare, caused….none other than by other, thoughtless individuals, who are NOT aware of what that feels like… The universe will find your solutions, as I have and will as well….
Music, to calm that ravaged brain, from all that medicine we have to take to try and live a normal life…with a smile…and poem in our heart..for a better tomorrow…
Praying…….You’ll have a greater life journey 🙂 Reading your blog makes me feel like I put my journal online….without my permission…lol
Giggles the Poet
I put my Thirty-Year Cross, on someone else s shoulders….
Love and hugs from your robot sister….
Reblogged this on Metaphysics and the Movies according to Dartanion2 and commented:
hi guys…well I finally had the “Spinal Cord Stimulator” implanted this morning…………it’s a test run for 5 days………so there are wires sticking out of my back right now………and there is electric current running through my legs and feet……….feels strange………..I was under for almost an hour and I can’t remember much………..but I will have MUCH more to say about this in the upcoming days……….this post from August (I think)…….will give you an idea what’s wrong with me and why I need this “Stimulator ” to work………..more soon when I’m feeling better……….noticed we have some new countries on board……….welcome to the RUSSIAN FEDERATION……..and Bolivia……………talk to you ALL real soon………and thanx so much for the kind EMAILS and phone calls………smiles……T xx
Hello my Angel brother….I hope this email finds you well and smiling…
To know that you have taken my advice, and are rethinking the stimulator part……..will help me sleep better at night knowing you won’t live the life I had to live the life I had to for thirty years….
I finally got the machine out in 2010….but, because it had been left in for so long….and never monitored…it grew into my spine…and the wires were left in as well…which ends any further hope for me in finding some way to tame the beast of pain…that the machine took care of each time it was on…
May others find the courage you did….despite the pain you face…to know there are better answers than being used experimentally…..
My prayers are always with you Angel…..keep reaching out of your prison of pain…that is the greatest link you can hold onto….until you come back full force….
Love and hugs Angel
Keep smiling 😉
Have a great life and writing journey 🙂
Giggles the Poet 🙂