Ok, remember back on June 28th, I promised I would keep you guys updated about what was happening with my C.I.D.P, well here goes!…..Today is Saturday…….I live on the beach, (practically) and it’s gorgeous outside today. So I snuck out again, cuz Isaac won’t let me go alone…….but, he was snoozing so I took a quick shower and headed through the tunnel, that goes under Lake Shore Drive, and onto the beach. Here’s how that went for me. It’s 4 blocks to the tunnel (stopped 8 times from pain) about 100 yards through the tunnel (stopped twice) and then I just walked about twenty yards to the wall where I can sit and watch everybody, and write. So I got there, got myself situated on the wall and placed my (platform) cane in front of me so I could support myself as I lifted myself back down from the wall. As I began to write I realized that my pen was running out of ink and it scared me because the idea of making a trip back, just for a pen, is painfully annoying. That’s what it’s like dealing with this everyday. Except that this is NOT normal. The going to the beach thing I mean. I NEVER get to go out on my own, (I’ve done it once before) and the idea that forgetting my pen could become such an enormous hurdle is just plain annoying as hell. But, like I said that’s what it’s like. Your life is dictated by other people and little things like forgetting your pen. BUT, I have been extremely HAPPY lately and that changes everytrhing. I’ve been So happy that taking a trip to the beach alone seemed like it was “no big deal!”……and it wasn’t, mostly because my pen started working again LOL!! The point I’m trying to make here is that happiness is making it much easier to “deal” everyday. There’s something in the releasing of happymones that makes pain bearable and life a little rosier. I swear, it really works. I even cleaned the kitchen before I left. I’m telling you that “attitude” is a HUGE factor in dealing with pain. So, if you know someone with my disease (Chronic Inflammatory Demyelinating Polyneuropathy) or just plain Peripheral Neuropathy, do something to make them happy. Get the happymones going! It really works……..The picture above is representative of the cells in my myelin sheath and they are the cause of all the fuss in my life……they are being eaten away by my own white blood cells…….but we’re slowing the progression with Meds and we will be doing the “consult” for my spinal cord stimulator next Saturday the 16th. So I just wanted to touch bases and let you know we’ve got this thing under control and I don’t think I’m lookin at a wheelchair any time soon. My walker and my cane are keeping me in the game, a wheelchair would be too depressing. Gotta stay positive!! I know you’re wondering what’s been making me so happy lately and I can only tell you this for now. God REALLY loves me a lot!! I’ll be filling you in soon….not quite ready to reveal my secret……but I promise I will soon………suffice it to say, Happiness is a serious medication!!! …..smiles……….I am Dartanion2 ………and that’s the way I see it!…………cheers……….tony xx
” UPDATING THE NEUROPATHY ” as promised…..
09 Saturday Aug 2014
Alice Lawson said:
Wow ! Happy, Happy :).. 🙂 knew it was in you and you have the courage to trust and positively move toward it by faithfully moving forward against all else ! ! So delighted 🙂 to see you out and trusting that life for you will flourish once more ! Wow! I am beyond happy truly my dear friend Tony xxxooo i know you have so much to personally dream about now. This is all such a fulfillment ahead of you. To truly know you are loved and Father God has released to you more love personally tickles my heart. I rejoice with you. Your Mom and family must be very happy for you. You keep every special delight within your own heart and do not let go or share until it is time. We love you but want you only to share details when it is best for you..OK ? Le y your energy to go where it is supposed to for now because it is essential when this break through is upon you. The gift is yours to enjoy and truly a gift from God given in the way Je knew was best ! You are wrapped in this loving light and presence with such delight and it is yours to share as it is yours to share first with those closest in heart and family. Let all that is intimately joyous and tender and loving be enfolded safely with you there as well. Father God entrusted this to you my dearest friend. Prayers are being mightily answered deeply in your heart a d spirit. His Holy Spirit and life attend you and your dearest ones. I rejoice greatly for you ! 🙂 your friend Kate from my heart along with Father God’s love to you and your dearest Mom and family and the source of you joy your very own sweet beloved xo
Hi, Kate, you know something…….it’s so kool of you to always say hello to my family………it’s appreciated more than you know…..and the fact you say you’re rejoicing with me about EVERYTHING……is, well, I’m not sure how to tell you how much that means to me…….I feel like I haven’t spent enough time talking with you lately………it’s like not talking to my sister for a while and then expecting a phone call for from your mom saying she’s being neglected. Know what I mean?…Guess I’m trying to tell you I miss our chats and emails……(although we didn’t chat too much on epals………still feels like we did)…..anyway thanx so much for all of your kind support on my blog…….hugs-n-smiles……..tony xx
Cherie Sumner said:
Dear Tony, I know how difficult it is for you daily with the challenges of getting around with your pain. My peripheral neuropathy type pains are nothing compared to yours and I have such empathy. I feel tired and want to rest with you when I hear how many times you must stop on your trek downstairs and through the tunnel to the beach. I wish I was there to walk with you and allow you to hold onto me. Although, I may not be the most balanced nor sturdy one to guide you…lol. But nevertheless, my desire it there to help. 🙂 I got great joy in hearing your positive attitude and happiness radiating through your words. I am smiling ear to ear and my heart is touched to know you are happy. May you hold onto that feeling and know it is real. May God bless your precious soul. I will be praying next Saturday the 16th and hoping the consultation goes well, and real solutions to help your pain and disease are met head on. You deserve a great quality of life. I want that for you more than anything. God is so good and He has you in His loving care. Love, Cherie