IT IS A ROUGH DAY...

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IT IS A ROUGH DAY...

Postby ppicklee » Tue Sep 07, 2010 1:50 pm

IT'S A ROUGH DAY...
please please understand me, it is a really rough day. I'm not having a pity party just a really rough time. I have lots to be thankful for. And I am... I am truly thankful for the many many things I've been given. A wonderful husband, wonderful friends, wonderful family etc. So much to be thankful for. So what is the problem?
I know that many people are on the CCSVI page on this forum and I will be the first to admit I've been there a lot as well. "So...p... what has changed today" I ask myself. Well nothing really and everything I guess. I'm tired. Tired of it all and tired of banging my head against the proverbial wall. That's it. From where sit as a quad with very very limited abilities from the shoulders down... it all of just sucks. My silly and stupid voice command (yet I'm thankful for the independence is has given me) is the last thing that is going wrong because my voice is going. Didn't I say I was having a rough day. Well there you have it... it's a rough rough day.
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Postby lyndacarol » Tue Sep 07, 2010 4:40 pm

ppicklee – You have many friends here who understand you perfectly. You are absolutely entitled to your feelings when you have a rough day! You express so very well these sentiments we all share – all of us are tired, tired of banging our heads against the wall.

Like others in this website community I'm sure, I wish I could wrap my arms around you, I wish I could help you get through this rough day. But the only way I know to help you is to keep you in my prayers. I feel so inadequate to find the right words, may you find the courage for each day.
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Postby Mirry » Tue Sep 07, 2010 4:41 pm

Hi Picklee

I just got home from work ready to read the days posts and I came across yours.

For me, I find you inspiring and I shall tell you why.

Back in 2000 I was involved in an accident that left me paralyzed from the waist down. Even after back surgery, my surgeon told me I wouldn't walk again. At 30 for me, this meant my life was over, done finished, or so I thought.

My parents sent me to private physio and a gym three times a week. They would wheel me in and leave me for a couple of hours. When I first met the trainer my parents had selected, I was shocked to say the least. My trainer was a quad and I will admit on first meeting him I thought, how the hell is he going to help me, he too is in a chair, this will be a total waste of time. But, it wasn't the physical help from him that was going to be the turning point, it was the psychological and emotional impact, I just didn't realize it at the time.

He gave me the choice, accept it or challenge it. I chose to challenge it and without him, I wouldn't be where I am today. I may have awful balance and still have loss of feeling in many places from the waist down, but he gave me the will and determination to succeed and for that I will always be eternally grateful to him for paying it forward.

When I read your posts and see that, instead of giving up, you have found the humor and determination that we all need to get through day by day. Instead of giving up, you found a way to communicate and give back to others, you don't have to but you do.

So you see, if you can find the strength that you have with all that you have had to endure, with all the sacrifices and adjustments you have had to make, I and others will know that we too can find the humor and determination if we dig deep enough.

So I thank you for being here on this website, for helping others, for sharing your good days and bad. For welcoming me with kind words and most of all for being an inspiration to me.

Sending hugs from Vegas to one very special Picklee

Mirry
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Postby ppicklee » Tue Sep 07, 2010 5:03 pm

Crap... now I'm crying. Voice command hates crying! Thank you Lyndacarol & Mirry!. Your words of encouragement... sweet balm for this aching wound. Thank you!!
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Postby kirsty23 » Tue Sep 07, 2010 10:28 pm

You're both truely amazin people....a real inspiration xx
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Postby jimmylegs » Wed Sep 08, 2010 7:40 am

ppicklee sorry you were having a tough go yesterday, hope today looks a little brighter.
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Postby ppicklee » Wed Sep 08, 2010 10:23 am

Thank you Jimmylegs but... nope. I would do a little mj spray (even though I am a self-confessed control freak) but I can't use my hands. Buck up P, I said to myself... buck up.
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Postby jimmylegs » Wed Sep 08, 2010 11:58 am

pp, IIMA, what have the docs offered you in the way of treatment over the years leading up to and since your dx?
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Postby ppicklee » Wed Sep 08, 2010 1:04 pm

No problem jimmylegs. I have done so much that this hard to keep straight but I will tell you what I can. Started with Rebif (insert long story here. Ironic ha ha.) Was offered a baclofen pump install into my tummy to which I said no thanks. Then I did some oral chemotherapy. Then some special order prescription that my wonderful husband applied to my spine. (Didn't I tell you he was great.) Of which was so painful that I cried (believe it or not physical pain isn't as painful as emotional pain for me) every single time (I tried not to show the pain. Buck up. p) until we both could not stand it. To sativex to... there is more but you get the idea. I'm on a plethora of medications of which I forgot one while we were on a trip (I guess I'm not that anal after all :-)) and the intramuscular drug needle should have put me down for two days but I really only got relief for seven hours. Oh yes and did I mention the supplements. The neurologist was so freaked out about the vitamin D which has since been "proven" to help. They even have a blood test for now (I found that amusing) that she sent me to a dietitian. You get the gist I think. Enough blah blah blah from me now.
REALLY AND TRULY Jimmylegs I am touched that you thought to ask.
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Postby jimmylegs » Wed Sep 08, 2010 5:50 pm

ow pp, sounds like a long rough road.

how long since your dx? or appearance of early symptoms?

could you elaborate a little on this bit?:

Oh yes and did I mention the supplements. The neurologist was so freaked out about the vitamin D which has since been "proven" to help. They even have a blood test for now (I found that amusing) that she sent me to a dietitian.


i get that it sounds like your neuro was not receptive to the idea of nutritional management (wouldn't be the only one!)

for the last bit, do you mean you were eventually sent by said neuro, to a dietitian for vit d3 testing?
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Postby ppicklee » Thu Sep 09, 2010 9:29 am

Hi Jimmy legs My dx was in 1994. I think I was slow running around the bases (baseball) in 1992. Married in 1993 and diagnosed in 1994. Elaboration and the vitamin D (I think that's what you mean). Now (different neurologist than the first) after my blood test they say I am low! Very worried because I am low. We (my wonderful husband) found this quite funny. As for vitamins/supplements I am working with an herbalist that's been with me since 1994. On a side note: I remembered something else. I did bee sting therapy and I have video that shows the before and after. Very very cool. After six months I plateaued so I stopped. After 30 stings each day for six months and then to plateau you can see why I stopped. You see... it is not for a lack of trying. Call me tenacious.
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Postby jimmylegs » Fri Sep 10, 2010 5:42 am

hi p, yes vitamin D is typically low in MS patients. years ago a naturopathic doctor recommended an ideal range of 125 - 150 nmol/L serum vitamin D3.

many docs will say you're okay if your level is in the neighbourhood of 70 - 80 nmol/L. that level is okay for bone health but not necessarily immune health.

serum D3 gets hydroxylated twice in your body (liver and kidney) from the version that is made in your skin when exposed to sunlight. the resulting metabolite 1,25(OH)2D3 is a powerful anti-inflammatory steroid hormone.

doctors test one step back in the chain to assess the body's stores of 25(OH)D3, that is the amount of material available to manufacture the steroid hormone.

when researchers looked at serum D3 levels and risk of MS, they found that the group with 25(OH)D3 levels above 100 nmol/L had the lowest risk of MS.

p there is quite an array of serum values that are low in MS. i imagine, unfortunately, that the longer a deficiency persists, the less reversible it will be. i have not looked into this extensively however. i do know that my own chronic b12 deficiency caused spinal cord damage which has not proved fully reversible.

i was only diagnosed in 2006 and got my best recovery from nutritional treatment inside 6 months. things are still not perfect.

there are quite a range of things that are low in ms, let me know if you'd like to take a list to your doc to investigate whether you have deficiencies common to MS patients. also i will track down and post a link to a post i recently did for Mirry.

my signature links provide intro information to nutritional approaches to MS, if you are interested:
Last edited by jimmylegs on Sat Sep 11, 2010 7:01 pm, edited 1 time in total.
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Postby ppicklee » Sat Sep 11, 2010 12:33 pm

I would be very happy to look at what you have laid out. Knowledge is power so they say. Thanks jimmylegs. And just FYI I am doing OK today. I picked myself by my metaphorical bootstraps and I am on the road again. YIKES!! That did not sound any thing like me! whoops. I said I was on the road... now let's just make sure it is the right road. Ha ha
p
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Postby jimmylegs » Sat Sep 11, 2010 12:43 pm

glad you're feeling better p :D that's great news.

here the link to that post i did for mirry:
http://www.thisisms.com/ftopicp-128490.html#128490

it contains info on vit b12, vit d3, zinc, uric acid, magnesium, selenium, ferritin, vitamin e, and i think that's as far as i got for that one :)
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Postby catfreak » Sat Sep 11, 2010 6:54 pm

Hi Ppicklee,

Sorry to hear about your troubles, we all here can understand in some way how you are feeling.

I just wanted to say hello and hug to you..... And Jimmylegs is the best on vitamins and supplements. She helped me several times.

Cat :)
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