Today I ran again
AnonymousApril 29, 2011 at 6:15 pm
I seem to be having some kind of relapse; for the past few weeks I’ve been swelling badly. But it’s true, I did run again, and it was wonderful. I thought it was the start of better things for me; I don’t know now, I’m in too much pain from all this swelling, and I’m awkward again.
Maybe it was only a taste of what it’ll be like in Heaven.
AnonymousApril 30, 2011 at 9:18 am
everything comes in stages. Let’s hope that you will be back in those running shoes pretty quickly.
With me, the golf clubs come and go. I have found that I can play 9 holes at a time. 18 holes is too much, and too many days in a row is too much.
maybe you just did too much at one time. Find your middle ground and you can enjoy your running again.
AnonymousApril 30, 2011 at 12:38 pm
I guess I must have overdid it when I tried to run; I ran almost half a block in total inside the house barefoot, then tried to leap up to touch the ceiling, but my feet wouldn’t leave the floor. Felt sore next day, but could still leap out of bed again and scurry-walk one more time this week.
But it’s this edema that is really wracking my body for the past few weeks. I’m so swollen and in pain now that I can hardly sleep at night because of the throbbing in my hands and feet. Can only wear slippers indoors now, and 1 pair of big loose runners to do essential errands downtown.
Don’t know what’s wrong; I wasn’t swelling before. Today my face is so swollen my eyelids are drooping down. Still can’t bend my fingers shut, though I’ve been trying for 5 hours this morning.
No help from the doc yesterday.
Seeing docs always defeats me, so frustrating and vexing to deal with them.
Last night in the wee hours of the am, I remembered one trick to deal with edema. Eat plain boiled white or brown rice. The digestive system transfers fluids from swollen tissues to the digestive tract; as the rice swells and draws more fluid, the swollen tissues shrink. Safer solution than meds too.
It’s always something with this GBS/CIDP. One step forward, then another relapse or medical problem. I’m getting used to it, and most of the time I can cope pretty well. It’s only when something else happens that I don’t know how to cope with, that this whole condition really gets to me. And dealing with those docs and getting nowhere, just a waste of time and money and effort. I wouldn’t have wasted my time to see the doc yesterday, but the pharmacist convinced me to go when I showed him my swelling, and he said they sell diuretics, but the doc would give me a prescription, so it was better to see him.
Those docs are sure put up on a pedestal for everybody to worship. I just wish they’d listen and help me already, and not go back to square one, it’s maddening. This last one suggested I didn’t even have GBS, he stated that he thought I was using a medical walker because of weight-gain, which I must have got from my years of asthma meds.
But I was a trim and strong athlete when this happened; then lost 25 lbs with the GBS; then gained it back and more due to being crippled, though I still walk everywhere with my walker. Dear God, it is such a farce to deal with doctors.
May 10, 2011 at 10:01 pm
Donna, I was thrilled to see that you had run again (I agree, Praise God!). My hope is there is no CIDP in heaven 😉 .
I know it sounds counter intuitive, but I’ve heard drinking the right amount of water helps the body rid itself of excess fluid build up. Check with your doc…
Hope you’re running again soon … without the swelling.
AnonymousMay 12, 2011 at 1:33 pm
Gary, there is no pain in Heaven, so no CIDP or anything else that damages people.
Still having a terrible ordeal with edema; can find no relief from the pain which is like GBS onset again, with fiery pain 24/7 in hands, feet, and lots of contractions in muscles. This pain is worse because the swelling intensifies it.
Tried ace..phen, Aleve, Tylenol, gelcaps…but no change at all. Fingers swollen the size of candles, ankles swelling worse every day. I remember at GBS onset there came a point where I could not fight the pain and uncramp each contraction during those long months, so I just accepted them.
When the pain is greatest, I hold my hands up for a minute and let the fluid drain down, and that helps to be able to bear it.
Hope to live through this, just didn’t expect this to happen when I was starting to do better. It looks like my whole body is breaking down.
Can scarcely form and play a single guitar chord now on my instruments, so work is an excruciating ordeal. Hanging on to the end; hoping for more rest soon, when the holidays come.
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Today I ran again
AnonymousApril 24, 2011 at 10:28 pm
For 3 1/2 years I’ve been partly-paralyzed from GBS (French polio), from my 2007 flu shot. It caused a stroke and paralysis of all 4 limbs, and extreme muscle and nerve fibre damage in my entire body. I’ve been using a walker and cane at all times.
Today, I was resting in bed as I often have to do now because of the weakness, and listening to the Easter version of “The Messiah” on the radio. And when it was over, I was talking to the Lord and saying…’remember when I used to be able to leap out of bed and come down running’…and suddenly, I got the urge to do just that. I leapt out of bed and started running barefoot inside the length of my apartment and back 4 times, and then I went downstairs and ran around inside my apartment 4 times one way, then 4 times the other way.
I tried to leap up to touch the ceiling as I used to do before, but my feet couldn’t leave the ground. By then, my heart was pounding so hard, I went back to bed, but I was ecstatic and praising God for this wonderful experience. I haven’t run since I got sick and damaged. In fact, most of the time I walk in shuffling, staggering baby steps. But I can only believe from this experience today that my brain and muscles are healing more and more, and the connections are being made for greater mobility.
I PRAISE GOD!!! 🙂
AnonymousApril 29, 2011 at 5:55 pm
Well, it’s true! I have suddenly been able to move more freely for a few days this week, and I’ve been walking indoors without a cane, and have had more power in my legs. My, I was enjoying all that!!!
But for the past few weeks my ankles, hands, legs, knees and arms have also been swelling up for some unknown reason. And now I can’t wear my medic alert bracelet or wristwatch.
This morning, my ankles were so swollen, I couldn’t see the ankle bones, my feet were just an extension of my legs. Looks like I’m having a relapse or something, so went to a doc and hospital for tests. Doc available wasn’t too knowledgeable about GBS, thinks patient only loses weight, doesn’t realize we gain it back and much more. Showed him my wristwatch and medic-alert bracelet in my purse and my swollen body parts, but he said he thought it might be my asthma meds I’ve been taking for 20 years. I was fine 3 weeks ago, and wearing my watch and med bracelet for 20 yrs. of asthma meds, and 3 1/2 yrs. GBS without a swelling problem. But couldn’t convince him of my logic.
Well, I don’t know what this all means, but I sure don’t feel too good these days from this swelling. But anyway, even though I can’t leap out of bed and run anymore because of this, I will never forget how wonderful that experience was, if only for those few brief days.
I just had to talk to someone here; there’s no help from those medical people. At the hospital, I finally found the nerve and the words to speak out to the staff about what I’ve been going through for all these years with the GBS, and all the bloodwork tech said was a belligerent: “Well…you didn’t HAVE to take the flu shot, did you???”, and one other tech person said that “I must feel frustrated”. Of course, they care nothing at all; it’s written all over their faces and attitudes.
This is one place I could come, and I know you care about my success and my relapse, and we’re all in this together. It will be wonderful in Heaven…there’s no more pain, no sickness; and nothing and no one to hurt anyone. All things are made new. My wonderful experience running again was only a taste of things to come there.
AnonymousMay 4, 2011 at 11:29 am
Sorry to hear about your relapse. Better days are ahead for you again, just hang in there. That makes me angry, the comment about getting the flu shot. I had a doctor ask me last week, “why did you get it?” Hmmm… let’s see there was media panic about how we were all going to die from the H1N1, a worldwide pandemic declared, and I am in the age group that was most affected, so…I thought I was being logical and safe. Isn’t that all any of us are doing when we get the flu shot? Trying to protect ourselves, our families, why are we judged for that, like it is our fault that we are one in a million to have a reaction….don’t they know that every minute of every day that we suffer in pain, we would like to take those seconds/minutes back that we had the flu shot? I get upset when I drive by the Health Dept building when I had the shot. It is the scene of the crime and my life was changed instantly, in seconds and I can never go back. People are so ignorant sometimes……I hope you feel better soon.
AnonymousMay 6, 2011 at 12:26 pm
Jessicah, the health care system betrayed us. They did not give us all the facts, and instead they pressured us into taking these vaccines. They did not listen to us when we told them of our vulnerability or sensitivity to allergic reactions. They did not give us info about dangerous reactions, and they did not help many of the people who did get dangerous reactions. They covered up the statistics; they denied people who needed diagnosis and treatment and ongoing support.
It is the scene of the crime, and of course they should be held responsible. But because they have this great power, driven by profit and a sense of entitlement, they can do this and what can the public do about it?
In my mailbox, I still get flu shot reminders from the annual fall clinic office. The last couple of years, I also got a special notice from them indicating their concern that I had not been taking the flu shot anymore, and how this would make me vulnerable to getting the flu. Such depths of hypocrisy!
Thanks for your support, everyone! My swelling and pain continues…and it’s bad…the reaction is almost as bad as the initial pain and crippling of GBS onset. Most of the time, I can only wiggle my fingertips, my hands are so cramped. But I’m forcing myself to use my hands and feet, and fight every contraction. Once in a while, my tissues shrink a bit, and then my hands look as wrinkled as deflated balloons. Never had this problem before, and sure hope I can survive it. I’m learning to despise the pain, and just go on with my daily routine. That helps, to a point; but my usual painkillers aren’t working too well right now.
Bless you all!
AnonymousMay 14, 2011 at 8:34 pm
Wishing you many many good days ahead.My gbs onset was also in 2007 wish we could find out why and how many have gbs from flu shot.I do know we have to force ourselves to move one more finger and one more toe each day.And someday be almost normal.I will take where i am as long as there is hope for all of us.
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