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    zoysia, again

    Hello, all!

    Been a long time since I logged on here. Haven't even been lurking which probably helped contribute to my very own PMS (poor me syndrome) "funk" that I'm in now, have been in, am desperately hoping to get out of! Please help me, if you can.

    I know I have many friends here; am hoping to make many more. So, here's my story/update; let's start at last summer:
    • was a pretty good, hot, summer. Did the beach thing, the vacationing thing, etc;
    • nothing really outstanding or remarkable happened to me personally; but...
    • at the beginning of August, my double, first-cousin dropped dead.

    You see? My family, including myself, have this genetic thing called Carney Complex. We "Carney's" can tend to drop dead for really no apparent reason but for the quick diagnosis of heart attack. Without an autopsy, it's very hard to put Carney Complex on a death certificate. Even with an autopsy, it's kind of hard to put Carney Complex on a death certificate. It effects the auto-immune system in many ways, with one possibility of causing MS, or another causes tumors to grow in the heart, or another cause of tumors to grow anywhere throughout the body, or diabetes, or strokes, or infertility issues, or MS, or diabetes, or heart problems, or lots of other things!

    Well, his father, my uncle (whom we suspected had Carney) died the very same way in 1978--for no apparent reason he just dropped. Gone. No autopsy, but then again, in 1978 no one even knew of Carney Complex--it hadn't been discovered. Further background: my sister had it too, with tumors that grew, and grew back, and grew back in her heart (had 3 open heart surgeries). She too dropped dead, from complications of Carney Complex, in 2000. Like I said earlier, we kind of tend to do that!

    Back to my story of summer--I flew out to Ohio for the funeral which did me a tremendous amount of good to see and catch-up with family and friends promising to re-visit Ohio in December for a Christmas Party that wasn't a funeral or wedding--I promised!

    I wanted to go, I really did!!! But didn't. The first sign that trip wasn't going to happen was in the beginning of September when I came down with a case of double vision. MS-caused, yes, with new lesions to prove it, but this time on the left side of my brain. Besides the vision problems, there's one lesion that's in the frontal lobe causing me to cry at the drop of a hat! For no real reason, just cry. So, I went through 3-4 weeks worth of not driving myself anywhere, barely able to walk in a straight line, and needing all sorts of support to do or get anything done. That was a very frustrating, maddening (yes, I was quite angry too), and debilitating time; I was scared more than anything. Scared it would never go away, scared that I'd lose vision altogether. So, when the invites for December party arrived, I had to break my promise. Family members understood way beyond my expectations and were able to share their trials with debilitation. That sharing was priceless! It drew us closer than ever. But...

    Autumn rolls in and everyone is clearing their yards of leaves and sticks and me? My back decides to give out on me in the beginning of November. Herniated disc caused from years of degeneration and "mis-use"(?) to the point where I spent well over 2 months in bed, barely able to move let alone walk. Doctor prescribes "the shot". The cortisone shot in the back to ease the inflammation. Fat chance! I had to stop taking all my supplements (you know the ones that an MS'er takes to help ease MS symptoms), ease up on the use of Tylenol and/or Advil, get "put" on morphine (which I semi-regret now) and wait. They don't schedule me until right before Christmas, Dec 20. So, by that time, I've been in bed for almost 2 months, have cancelled all sorts of doctor's appointments until AFTER the shot and the subsequent healing, and do pretty much nothing. So, I wait.

    By the time Dec 20 rolls around, I'm frustrated, scared, angry, a little depressed, and in PAIN! But, I get to the clinic with an excellent morning blood sugar of 149 (excellent for me!) and they start prepping me. Now, I'm getting excited and a bit anxious! Right before administering the actual shot, they do a finger-stick blood test. Then, tell me they CAN'T do the shot, the sugar reading is too high......WHAT?!?!?!?! and send me on my way. What do I do now!? Oh well, it turns out that there's really not much anyone can do if I can't get the shot. So, you get it, (with new lesion even!) I cry!

    And cry some more, almost uncontrollably.

    Eventually, I pull myself together and with my determination, decide that this stupid back isn't going to slow me down, no way! no how! not me! So, the very next day, determined as I could ever be, I get out of bed and feed, and start to walk, the dog, damnit! Then, DAMN IT! Going down just 2-steps into our sunken living room, to head out-back, I inadvertantly lead with my right foot/leg (which hadn't been used for close to 2 months by now) without thinking or concentrating on it--lead with left, lead with left, OH NO!!!!! My right leg cannot support the weight of my body and my foot buckles up and then under me. Broken. Oh, joy!

    Let's review: MS, check, insulin-dependent diabetes, check, herniated disc, check, broken foot, check! I'm a mess -- and it's not even Christmas!

    I get a brace/boot to wear for the next 4 weeks, and head back to bed. Oh, even more, joy!

    Christmas and New Year's come and go. And I wonder at how I've been able to live this long. Pick myself up again, and press forward.

    Now that we're well into 2013 now, you might wonder what I am doing now to ease the back pain and regain some use of my right leg/foot. Chiropractic. At first, it helped a ton! Allowed me to walk again without the walker or a cane or holding a hand. But in recent weeks, it seems to be not working at all. I go in and come out without any change in feeling--shooting pains in right leg, burning sensation in right leg/foot--and some days it hurts worse than when I went in. So, am going to give it a couple more tries, maybe even a couple weeks more, but am getting very discouraged with Chiropractic now.

    But! In the meantime, I've restarted the physical therapy, plus, added a p.t. aquatic session to it. PLUS!!! Started going to the M.S. Aquatics "class" given at the local community center pool. That, in and of itself, has seemed to help me beyond imagination! Just getting back into the water is amazing--I never realized that I missed it so much! The buoyancy is marvelous, in that, I can do exercises IN the water that I'd never even think of doing on land! And work muscles, exercise muscles, tendons, do stretches that are impossible for me on land! I can't wait to go back, but that's already 5 days from now...I must be patient.

    I'd recommend to any MS'er, find a pool that offers the MS Aquatics sessions/classes and go. It's well worth it!

    So, to review, I'm still insulin-dependent since 1986, diagnosed with Carney in 1992 (I have the gene, so does my son), diagnosed with MS in 2007, diagnosed with herniated disc & broken foot, 2012, but am healing as best as I can!

    Zoysia

    #2
    Wow! You have been through a lot and yet you keep it moving forward.

    Sorry about the loss of your cousin. I hope that things will improve again with your water exercise classes. They sound awesome! Do they help your back pain?

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      #3
      Thank you for your kind words, Tia1.

      Yes! The aquatics DO help with the pain in my back, and legs, and muscles. The water helps strengthen support muscles, core muscles that, because of the pain, I haven't used in months.

      I keep moving forward because I choose to not go backwards. Sometimes it's a painful choice, sometimes not. When it is painful, I learn the lessons, forgive myself, then decide on which better, less painful path to take, then go! Just go!

      I also keep in mind that tomorrow may bring the news we'd all love to hear, "an MS cure is found!" Maybe, just maybe.

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