Moving

Moving has a way of getting right to all those places in my psyche that I have so efficiently tucked away. I’m moving in October to Santa Fe, NM. It’s bittersweet. Crested Butte is my home. It is my familiar. I feel safe here. However, not walking and living in a town that snows 400 inches every season has finally taken its toll on me. I sold my house. That move in and of itself set me emotionally upside down. My initial reaction was one of complete loss. I thought, “I can never come back!” I have a flair for drama when really rockin’ my self pity routine. Then I sat with it. The house, is just a house. It’s wood, plaster, nails – you know it is the stuff that makes up a house. The attachment is how it makes me feel. Again, I feel safe; this has been my home for seven years. My work now is to separate how I feel in this house from the house itself. I am working to come from a place of abundance, not lack. Abundance says, you are safe always, you can come back and buy another house, Crested Butte will always hold space for you. Lack screams out the opposite on every front. Lack is the lazy way to do it. I needn’t call on faith, muster any courage or take any chances. I have spent some time in lack, I know it well. I also know it is not my friend, it will not serve me.

So I continue to pack. I don’t want to shove it all in box and deal with another day. I am dealing with it now. I am finding pictures of me, in the not too distant past, standing. Those are hard. This illness is hard. Then I stumble on pictures of my best friend, Andy. He died last year, that’s hard too. I miss him more everyday. It does not get easier, that’s hard. I wish I could launch into all the things I that I am unearthing from past that bring me joy, but so far this part of the move has lacked balance. Cleaning out the office, where one puts all of the letters, the photos, the cards, the memories has, so far, been hard. My goal is to have the office done by Sunday. That will be cathartic. All of the memories lined up like little soldiers. Neatly organized and placed into boxes. Everything in its place. It seems to be the best I can do for now. And as I know, sometimes you just gotta take that and call it good. I’m looking forward to packing the kitchen, I mean how much emotion is a plate going to evoke? Me thinks, none. I always like to start at the hard spot and then let it get easier.

Another note on moving, how is it that one person has so much stuff? I’m not a pack rat, but it seems that once all my stuff found out that I was seeking to organize, minimize and store it, it quickly formed a revolt and began multiplying. It is me versus my stuff. The naive thinking of “one box ought to do for this” has been tabled. This is war. Armed with boxes and label-er, I’m going in…

Hello old friend

Oh my poor neglected blog. Hello old friend, i’m back.

Truth be told, I wanted the blog to help document my amazing gains that i just had to share with the world. The reality is the gains do exist, but staggering they are not. I have more sensation in my feet, better circulation and improved strength. I have had the last few months to sit with my expectations vs. reality. It has been a little rough, but i have found peace with it. The mere fact that i can speak of gains under the circumstances is amazing. Being attached to something looking a certain way can have devastating effects. Once i was able to release my grip on what i thought it should look like, my life has been so much easier.

I’ve started public speaking at any venue that will have me to raise awareness about the Liberation Procedure. By trying to help others i am shifting the focus off myself. My illness has caused me to focus so hard on myself,that i don’t think i stand a fighting chance unless i can loosen my grip. Surrender has grace, control is just asking for disappointment. I am thinking it is really that simple. Habits like to take up residence in my psyche, so in order to change the me-me-me-me-me habit, i am shifting the focus to the 2.5 million people who are diagnosed with MS. That ought to keep me busy!

Here’s a link to my first public speaking event. It is called Ignite Boulder. The speech had to be only 5 minutes with a slide show of 20 slides that automatically advance every 15 seconds.
The crowd was 1350 people, i got a standing ovation!

Back home

As one may have suspected over the years, i was indeed twisted. Angioplasty was applied to my left jugular. I must admit, i was hoping to be more twisted. However, now i look at it and something more minor makes sense. I have been dealing with compromised health and a slow steady decline for 20 years. So something minor but definitely wrong, seems to fit the bill.

I reflect on the enormity of the past week and i have no idea where to start. Last week was easily the most rewarding, terrifying, hopeful, stressful, joyful and amazing weeks i have ever had. Emotionally, i am still like a time bomb. I know i am not alone. Euromedic packs em in, fixes em, and ships em back out. Because of thisisms.com (TIMS) i knew most of the people. Another first, to become acquainted with people on an online forum and then actually get to meet them. I would meet someone we would exchange the usual formalities one has when meeting a stranger. Then one of us would give our Handle for TIMS and the energy shifted from a meeting a stranger to seeing an old friend. My gratitude and appreciation for TIMS continues to surprise and delight me.

I have been home one day and all i really want to do is rest. I would love to report that i feel wildly different, but that statement has no truth. My changes are little, but they are changes. My feet are a little warmer and yesterday i broke a sweat. i have not sweat in years. As fellow ms’ers know, that is not part of what we do. I am excited and nervous to see how things unfold for me. i will be updating my progress as well as telling some stories of “Adventures in Poland.“ For now this is all i’ve got in me.
until next time…
-c

Got-er-dun!

It has been one hell of an adventure. I will write about it all soon. For now, I leave you with the fantastic news that i have been liberated! My left jugular vein was blocked. The doctor used angioplasty to correct the blockage.
And just for the record, being a hospital + no one speaks english + not really understanding what is going on = the aforementioned “hell of an experience.”

Now i rest, more soon.

Going to Poland

As luck would have it, as fate would have it, as whoever runs this show would have it- I’m going to Poland on March 20th for the Liberation Procedure.
My testing is on the 23rd, followed by more testing the morning of the 24th, followed by the procedure.

Perhaps i should shed some light on how this process works. First I sent off an email to Dr. Simka in Poland. Then I waited. It felt a lot like throwing a bucket of water in the ocean and expecting it to change the ocean. Then I waited some more. Then one day an email arrives to tell me I’m on the waiting list for May 2010. Then i waited some more.
Here comes the bonus moment for me- I am always checking the thisisms.com web site for all things CCSVI. (It’s the best resource available) About 2 weeks ago I saw a post from someone who has to reschedule her March appointment and in doing so is bumped to the end of the waiting list. That would be the end of 2011. i write to this person to purpose a trade, my May date for her March date. By what i am still considering a miracle, i get the best email i have ever received in my life the next morning. It tells me my dates in March, where i’ll be staying, how to prepare for surgery (replete with “groin shaved”), my transportation arrangements, and where to wire the 10k and by when.

I make all the calls alerting every one of my fortuitous turn of events. My brother and his wife handled the wire transfer. I am not really sure how to properly thank them. Words can’t ever touch my gratitude for this, but that is what i have for the moment. So Dooley and Sarah, thank you so much, my intention is to give you a fabulous return on your investment. Thank you for believing me.

Next I have to call my potential travel companion and see if she really meant it when she said, “I’ll go Poland, sure why not?” She said this before reading in the guidebook that , “Katowice, Poland is a very difficult child to love. ” So to Adria, my travel companion, thank you for taking one for team. I’ll try to be entertaining…

Travel – I have to get to Poland. Enter my dear friend and neighbor Dawne. Back in 2006 Dawne won 2 first class, round trip ticket to Europe from raffle she entered that was put on by Joe Cocker. Dawne graciously offered the tickets to Adria and I, *IF* the tickets were still valid and transferable. And so began a very laborious process of obtaining these tickets. The story of how it worked out is both painful and boring so I will spare you the 5 day roller-coaster it took to get these tickets. You know the expression, “It takes a village” well that expression is applicable. A huge thank you goes out to Dawne (for being my hero), Pam Bliss (My mother’s best friend who just so happens to be friends with and on the board of the Cocker’s. Thank you Pam for championing my cause and helping to plead my case. Not sure how you did it, but it worked- thank you), Sue (Joe Cocker’s right hand woman, who endured countless hour on hold with United and worked all weekend on my behalf), The Cocker’s (for the miles and willingness to act on such short notice), All the different people who are in the Cocker’s travel assembly (who also tirelessly dealt with United, and did so on their time off all weekend), Adria (who originally irritated the United representative enough for her to hold our reservation despite the rules), and Dooley and Sarah (for purchasing the remaining needed miles). Thank you all.

Lastly I would not have the courage or conviction to even attempt any of this without unfailing love and support of my mom and dad. I am lucky to have you both. Thank you so much.

Adria and i are flying first class to Poland!

Shiz-bizz-my-nizzel! I’m really going to Poland.
Holy shit.
Thank you thank you thank you-

Until next time
-c

Borrowed from Thisisms.com

CCSVI, Just the facts, ma’am

1. What is CCSVI?

Chronic cerebrospinal venous insufficiency… it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”…a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.

2.How is it related to MS?

The majority of MS patients tested so far have it. Over 500 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Sixty five MS patients in the US have it. They were tested by Dr. Michael Dake. Twenty MS patients have it in Poland. They were tested by Dr. Marian Simka. Two patients in Paris have it, they were tested by Dr. Claude Franceschi. 1700 patients and controls are being tested for it by Jacobs Neurological Institute at SUNY Buffalo.

None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.

3. So???? Maybe the MS lesions cause this. Chicken and egg and all that….right? Couldn’t the lesions do something to the veins?

Probably not. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine….because it happens in other places in the body, and we’ve known about it for years.

a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots), iron deposition into tissue, or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can’t. Dr. Zamboni wrote a paper called “The Big Idea”-where he likens CCSVI to chronic venous disease of the legs.

b. Congestive Venous Myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak damaging red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.

4. Well…that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?

CCSVI has been found in MS patients, whether or not they are on immune modulating medication. A woman who underwent complete immune ablation with Revimmune still had CCSVI with 2 blocked jugulars. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested over 500 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

5. How can I find out if I have this?

There are a few different protocols, depending on where you live and what is available. In Italy, Dr. Zamboni begins with a doppler ultrasound of the neck and brain, to see if the blood is refluxing. Then he performs a venography. This is where dye is injected into your veins to see the blood flow and possible stenosis. Jacobs Neurological Institute is following this protocol and also using MRV (magnetic resonance venography) Dr. Dake at Stanford was using MRV followed by endovascular venography to diagnose stenosis. Dr. Mark Haacke is using a combination of SWI-MRI technology and MRV, but he also recommends doppler testing to confirm reflux. In Poland, Dr. Simka is using doppler technology followed by venography. As you can see, right now the diagnostic protocol is dependent on your location-

6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it’s unproven.

That’s your neurologist’s opinion. Ask s/he what they believe causes the MS demyelination process. And ask for the facts, not speculation.

7. My neurologist says that MS is autoimmune, and he can prove it! I have oligoclonal bands in my spinal fluid, and that shows my immune system is going after my myelin.

Remind your neurologist that oligoclonal bands in spinal fluid also appear in people with neurovascular disease- like stroke and dementia. It’s a well known fact that the immune system is activated to clean up after axonal death and tissue damage in the brain. CCSVI causes damage to the brain and axonal death, and the immune system becomes involved. But this doesn’t prove that the immune system causes CCSVI or MS. Autoimmunity in MS is still a theory.

8. Yikes! If I have CCSVI, what can be done about it??

The good news is that Dr. Zamboni has been testing a procedure (the Liberation procedure) in his Italian patients for three years. He goes into the femoral vein endovascularly (thru a small incision at the groin) and goes up into the blocked vein and opens it with a small balloon. He’s done this to hundreds of patients, and many have greatly reduced symptoms and healing. He’s also done this procedure on 18 MS patients who were in the hospital in the midst of bad relapses. The relapse symptoms stopped and were reversed in 4 hours to 4 days from having the balloon procedure…without steroids! Dr. Michael Dake at Stanford University was using stents (metal tubes) to keep the veins open if the ballooning did not keep the veins open. Treated patients have had reduction in fatigue, heat intolerance, spasms and some have had improved vision and mobility. Dr. Marian Simka is overseeing these stenting and ballooning procedures in Poland. Stay tuned! We’ll have more to report in the months ahead