Pam Goes to the Bees!

My blog has been neglected while I took a short trip to a new obsession! I've been off to a land where I am mesmerized by honey bees, and I have to say that it is an obsession as strong as CCSVI has been!

As mentioned in previous posts, my husband is a beekeeper, and I've been helping him with his business. In addition to having several colonies of bees on our property, we are selling seeds for flowers and herbs that bees love.

The photo above shows a swarm of honey bees that left one of our colonies and landed on a tree in our yard. I thoroughly enjoyed watching the bees fly around, thousands of them, and then gather with the queen on a tree while their scouts searched out a new home. In this case, we collected the swarm and put them in a new hive on our property.

I'm still interested in CCSVI and wanting to spread the word about the research that is taking place. I'm still in the waiting place... not ready to be treated, but wanting to follow the details of how treatments are going, who is treating where, etc.

I'm excited about the amazing meeting that is being put together in Seattle on January 28th, and will be there for the meeting.

I'm pleased to announce that I'm combining my two obsessions. Starting today, I'm raising money for Buffalo Neuroimaging Analysis Center (BNAC) by having a "Bee Garden Party" MStery Party - you can see the details on my MStery party page. You can donate directly to this virtual party by clicking on the red text at the top of the MStery party page. Or, if you place an order at the House of Bees website and use coupon code BNAC, you'll save 10% off of your order, and we'll donate 10% of all orders to BNAC.

Our main product is the Bee Garden Seed Collection, which is a collection of flower and herb seeds that the bees will love. You can plant these seeds and create a bee garden in your backyard. We also sell other seeds that the bees love, and will also soon have mason bee houses and supplies.

I'm excited to announce this fundraiser. The bees are in trouble. They need our help. They are quickly losing habitat, and you can help by planting a bee garden. BNAC needs our help. They need us to support their research so that we can all learn more about CCSVI and its relationship to MS.

Please make a donation or buy a Bee Garden today!

Thanks!

PS - If you're on Facebook, you can friend BNAC and become a fan of House of Bees.

I like...

I was at a seminar recently where one of the exercises was to name things that I like. (Thanks, Mo!) For one minute I had to repeat the sentence "I like..." followed by something that I like! This is a great exercise to focus on the what's right - so much of the time I tend to focus what is wrong, or what I don't like.

Here's my list of the things that I like that relate to CCSVI. Think of this as kind of a Top 10 list (except that I’m not going to number it, and there may not be 10!)

I like:

• the magnet that I found in Aurora, NY when I was tested at BNAC (pictured above.) OK - it really isn't about CCSVI, but I loved finding it on my Buffalo trip!
• the CCSVI word cloud t-shirt, which can be viewed and ordered here. Sandra created the shirt from the writings of folks who have MS who wrote about what CCSVI means to them. Sandra is the admin for the CCSVI in MS UBC Facebook page - click here to see her page.


• Joan's CCSVI in Multiple Sclerosis page – click here to see it.


• the CCSVI Alliance - click here to see their new site. They also get the vote for my favorite charity! The check's in the mail!


• people who take CCSVI seriously but who also make me laugh. This one's a tie:


• WaYnE at the CCSVI Toronto Facebook page (click here to see the Facebook page and here to see the latest cover of Liberation Quarterly).


• Dr. Sclafani on ThisIsMS (click here to see the 194 page thread where he answers our questions). I think I may have to comb through that long thread to find the "Sclafani"isms and make a list!


• Flowers 4 MS. Angela sells greeting cards and t-shirts here , and also does a wonderful job translating Italian text for us. Check out her Facebook page here. Angela is currently donating proceeds from her fundraising to BNAC.


• the many other folks raising money for BNAC: Jill, Larry, Linda, Jackie, Orna...


• IrishBear76 on YouTube.


• Wheelchair Kamikaze. Click here to read his blog. He's articulate, thoughtful, funny and has a great ability to see both sides of a story. He writes about MS as well as CCSVI.


• Allison Shadday's book titled MS and Your Feelings – it can be ordered here on Amazon. Allison’s book is about MS and there is great advice in it about dealing with a chronic illness which will apply to CCSVI as well. I know for me that the emotions around CCSVI are similar to when I was diagnosed with MS. This is a truly helpful book, especially the parts around grieving and loss.
  
• all of the new friends I've made along this CCSVI journey, which is really just beginning.
  
  

Pam Parties at The Pink Door

Wow! What a party! When Jackie Roberts, the lovely owner of The Pink Door, throws a party, she goes all out!

On June 27, 2010 Jackie hosted the Festa per la Salute (Party for Health) at The Pink Door. The money raised supports CCSVI research at the Buffalo Neuroimaging Analysis Center (BNAC). It was a wonderful evening with great food, excellent entertainment, fun drinks, and special guests appearing via Skype.

We arrived in Post Alley at about 5:15 pm to find a line at the door. The entrance to The Pink Door is just that... no sign announces that you're there except for the pink door. A very funny and tall woman on stilts was there to greet us. Someone took our names at the door and passed them along to the announcer - or was he an emcee - or was he a ringleader like at the circus? Anyway, he announced our name over the loudspeaker as we descended the stairs into the main dining room. At the bottom of the stairs Jackie's sisters were there to greet us and offer us wine or the signature drink (more about that later!)

The next stop was the BNAC table, where Linda Safran (the Development Director) and her daughter Jenny were sharing the news about what is going on in Buffalo. It was wonderful to see Linda again (I met her in May when I was at BNAC for testing) and to meet Jenny.

The entertainment for the evening was amazing. The dining room has a very tall ceiling, and there was a trapeze artist performing as we walked in. As we moved from the dining room to the lounge, an artist was working on a painting. On the deck, which has beautiful views of Elliott Bay, there were musicians - a tuba player and an accordion player - as well as four young ladies performing modern dance. In the lounge there was a man slicing prosciutto. Over the course of the evening there were various musicians performing on the stage in the lounge.

Jackie's staff did an excellent job taking care of us. When it was time for another drink, or oyster, or appetizer, they were there.

Speaking of drinks... The signature drink of the evening was the Wheelchair Kamikaze. Jackie named the drink for Marc, writer of the excellent and award winning blog: Wheelchair Kamikaze. If you haven't seen his blog click here to have a look. So, what's in the drink? Take a regular kami - vodka, lime, triple sec - and add blue curacao and two wheels of lime, and there you have it! And I did... I had several, and had the hangover to prove it the next day.

The food at the party was wonderful. My husband loaded up a plate for both of us, and there were lots of options for us vegetarians - veggie lasagna, gluten free pasta, salad, bread. Good stuff. There were two options for dessert - strawberry sorbet and Bongo Bongo. We had multiple plates of Bongo Bongo at our table - yummy profiterole with chocolate sauce.

One of the highlights of the evening was when everyone gathered in the lounge and a large screen came down from the ceiling. Jackie gave a heartfelt thank you speech, and announced that we would be Skyping with Marc - the Wheelchair Kamikaze. It was great to see him on the big screen, and he was inspiring and funny. He announced that our next guest would be Dr. Robert Zivadinov, the director of BNAC. I have to confess that I went back out on the deck to sit down during Dr. Z's talk - with no disrespect to Dr. Z, but the alcohol and MS were taking their toll and my legs were tired!

After the Skype sessions were over, there was more entertainment on the deck - a fire dancer! It was great to see her perform with Elliott Bay in the background. As the evening went on, there was more music on the stage in the lounge and the accordion player continued to play on the deck.

Jackie's party was important for fundraising for CCSVI research. However, just as important for me was to have so many people with MS who are interested in CCSVI in one place! While many of us had communicated on ThisIsMS.com or Facebook, most of us hadn't met in person. It was wonderful to meet folks who have already had the procedure: SammyJo, Marie, Janet (who I believe gets the award for traveling the farthest - from PA!), and Kathleen. It was also great to meet people with MS who are just as obsessed with CCSVI as I am! I know that we'll stay in touch, and there's talk of meeting again later this summer. If you were at The Pink Door and I didn't meet you, please find me on Facebook or post a comment here.

My beekeeping husband also connected with a beekeeper friend of Jackie's, so he was happy to talk with someone about natural methods of beekeeping, Warre hives and swarms!

For those of you who aren't in this area, please keep The Pink Door in mind as a great place to have a meal and enjoy some entertainment when you're in Seattle. It's an easy stop - just one block up from Pike Place Market!

And to the lovely Jackie: thank you for what you've done for CCSVI and Seattle. You've helped us to find one another; you've helped to fund the research; you've helped to spread the word about CCSVI to people who may not have heard. You gave us a place to meet and a party to remember. You are an inspiration. Thank you!

To the post office!

Today has been quite a day of mixed emotions. I've heard that Barb Farrell will receive treatment in the U.S. on Wednesday. THAT made my day. I had a wonderful private response to my Pink Door video from someone involved in fundraising for MS and CCSVI research. THAT made my day. I've helped match up people with sponsors to attend the Pink Door party. That's awesome.

However, I'm also frustrated. There's a bit of a story behind it, and I need you to know the background.

In January 2010 I embarked on a letter writing campaign. I took the advice of many (especially Joan) to "go local" and bring the CCSVI research and information to local doctors who could help - Interventional Radiologists and Vascular Surgeons. I wrote a 2 page letter. I looked up about 20 doctors. I printed the letters and mailed them. In total, I heard back from about 6 doctors. Two of them actually called me! Not all were interested in acting right away. There is one doctor that I've had contact with via email since he replied to my letter in February. I shared new research, we discussed insurance. I emailed him about Dr. Dake's presentation in FL back in March, and he emailed that he was there in person to hear him! He emailed recently looking for an update on me. That email arrived while I was in Buffalo for testing at BNAC. I've since sent him my test results.

I sent him an email to let him know the tests were in the mail, and asked a few "while we're waiting" questions. One of these was:

"How many MS patients have you heard from about CCSVI"?

Can you guess what his answer was? I mean, c'mon. I'm in the Seattle area where the incidence of MS is high. I'm thinking "he's heard from a lot of people." His response:

"Five"

Five? Am I really only one of five people in this area interested in CCSVI research? I find that really hard to believe... *sigh* That is the source of the frustration today.

When we heard about Barb Farrell, we all asked "What can we do?" and we emailed and sent letters.

I have a request for a new letter writing campaign.

For now, just for today, skip the neurologists. Skip the celebrities. Forget about your primary care doc. Just ignore them for a moment.

If you're in the U.S. and you haven't written letters to vascular doctors in your area, please do! Here are a few easy steps that you can take to help spread the word about CCSVI and to encourage a local treatment option for YOU!

• Use the internet to find local Interventional Radiologists and Vascular Surgeons in your area (see below for a link). You are looking for doctors who perform balloon angioplasty, also known as an "endovascular" procedure.
• Write a brief, heartfelt letter in your own words
• Print the letters and sign them
• Mail the letters in a hand-addressed envelope
• Post here or on TIMS or on Facebook to let me know that you've done this. Be number 6! :-)

See how easy that is? It doesn't sound like that big of a deal, right? It's really not. But it will take some time. Maybe a few hours. It will be worth it! Think of Joan getting the research to Dr. Dake. Think of 'bestadmom' from TIMS getting the research to Dr. Sclafani. Did you hear Dr. Sclafani's speech from Italy? He is involved in this because he got a letter from 'bestadmom.' He was about to retire, and now he is working on CCSVI for us. Because of one person. That person could be you for a doctor in your area. "Why me?" you ask? "Why not you?" I ask.

Please help us spread the word to doctors who can help us. And if you think "Well, someone probably already did this..." please don't let that stop you. The more letters, the merrier. The more letters, the higher the impact.

Am I done yet? Not yet... Here are a few more hints on what worked for me. If you're wanting to send letters and thinking "I don't know where to start," here are a few tips:

• In my letter, I included my personal contact info: Email, phone, mailing address.
• I included a very brief statement about what CCSVI is.
• I included one or two websites. I included Dr. Haacke's site. If I were writing the letters now, I would also include theVenous Multiple Sclerosis site which has an excellent list of published research. (See my links at the top of this page if you need web addresses for these.)
• I was upfront about the fact that I have MS, and am looking for relief from symptoms. I was clear that I knew that this wasn't a cure.
• I was clear about what I was asking for. I was asking for testing and treatment.
• I offered to send more information if they didn't know about CCSVI. I did not include copies of research, as I didn't want to send it if they already knew about it.
• I included the 'big names' who were involved at the time - Dake, Simka, Zamboni, Haacke, etc. There are now more. Include the new doctors - Siskin, Sinan, Sclafani, etc.
• I mentioned a brief summary of the research that was going on.
• I mentioned that patients were anecdotally reporting great improvements, and that Zamboni's research indicated quality of life improvements.

I found the doctors names using several methods:

• Society of Interventional Radiologists website Use the Doctor Finder on the left. Choose your state, and then choose "Angioplasty" as the specialty. Here's a hint on these names. I cross checked them. Some of the addresses were not correct. Some of the doctors had changed hospitals. Google their names, and search out their websites. Verify the address.
• Be sure to look up the IRs and VSs at the big hospitals and univeristy hospitals in your area. Note that not all Vascular Surgeons perform endovascular procedures, which is what we need. IRs do... that is all they do! Before you send a letter to a VS, check out the info. A lot of hospitals and clinics have detailed information about each doctor.
• Don't forget the private clinics. The physician owned, physician run clinics. Think of Siskin at Community Care in Albany...

I'll leave you with one final note. Please write your own letter. It should sound like you. You should know the research. You should know the terminology. Why? Because if you write these letters, a doctor just might call you. Be able to "talk the talk" when they call. I encourage you to write a letter that is so compelling that they can't help but call you. And when that happens, please let me know!

Now - off to the Post Office with you!

To The Pink Door! June 27, 2010

Please join me in Seattle at The Pink Door on June 27th. Can't attend? You can help by sharing this video with others, or sending a donation. Also, I'm 'matchmaking'! Contact me to sponsor someone if you can't attend, or to be sponsored if you're in Seattle.

To reach me privately about matchmaking, please click here to send me a private Facebook message.

The waiting place

One of my favorite books is 'Oh, the Places You'll Go' by Dr. Seuss.

My friend Dorothy gave me this book before I left on an adventurous trip to New Zealand back in '93.

What a fun book. Oh, the places I've gone... and the places I've yet to see... The book has advice for life's ups and downs.

It's that book title that inspired the name of my blog.

The path of testing and treatment for CCSVI has and will take me to many places, both literally and figuratively.

Right now, I find myself in

'The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No...'

It goes on, and here's what I'm really waiting for:

'Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.'

--Dr. Seuss, 'Oh, the Places You'll Go'

Yes, the place that the Boom Bands are playing. That, in my mind, is what I'll hear after treatment for CCSVI. Certainly the Boom Bands play when one is liberated, right? Or so I hope.

And yet, I'm in the Waiting Place both by geography and choice.

I want to be treated for CCSVI locally. No one, that I'm aware of, is treating locally. I'm in touch with a few doctors and am hoping someone will start treating here soon.

Then there's the part of me that is waiting by choice. I have many fears. Re-stenosis. Stents. Clots. Getting worse. There are so many people feeling better after having their veins open. However, this is still an experimental treatment, and I'm having to figure out just how much of a risk taker I am. Where is my comfort level? What's going on with my MS? How long can I wait? Where am I emotionally? What can I handle? What am I willing to put my friends and loved ones through? There are so many questions in the waiting place.

I've been mulling this over for days and trying to figure out how to put it in words.

I've learned to follow my gut instinct. While my emotions may try to take over, I need to balance them with the logical side of me that does the 'pros and cons' analysis.

I had an email from Euromedic the other day - Dr. Simka's group in Poland. I had sent an email months ago. They still had me on the list, and were wondering if I was still interested. I didn't hesitate in my reply. 'Please remove me from your list. I'm waiting for a treatment option that is closer to home.' I'm on other lists, but they're not close to home either. I'll have to wait as my name comes up to see how I feel.

So, I wait... and I'll know when the time is right for me.

To all of you pioneers who have been treated both here and abroad, a heartfelt thank you for pushing ahead and helping to figure this out. I do believe that this will be a big discovery in the disease that we know today as MS.

And, I do believe, that one day I'll hear the 'Boom Bands' that mean liberation and hopefully a loosening of the grip that MS has on me... when the time is right for me.

Fundraising for CCSVI

I fully support what Buffalo Neuroimaging Analysis Center (BNAC) is doing to research CCSVI. By participating in their self-pay CCSVI Database Study, I helped them with their research in several ways. I added data to their growing set of CCSVI data to help make the correlation between vein issues and MS. In addition, a small amount of my fee will go towards helping them continue their research. I've also donated to one MStery Party, and will be attending another.

The best way I can help now (I don't have unlimited funds!) is to continue to spread the word about what BNAC is doing, and how you can help them financially. Their total study cost is $5 million. Hopefully they will get funds from some big donors.

In the meantime, they are asking individuals to help by holding MStery parties. This can be a party held at a restaurant or park, or it can be a virtual party. If an individual party raises more than $1,000 there is a matching grant of $1,000 from the Direct-MS Foundation (Ashton Embry's organization). Check here for more information about hosting a MStery party: BNAC MStery party.

Here are a few of the MStery parties I'm aware of:

Jill and Larry Nolan are hosting a MStery party potluck picnic in Edwardsville, IL on June 13, 2010. If you're in the greater St. Louis area, please consider attending. If you can't attend, please consider making a donation and be a 'virtual' partygoer: Jill and Larry's party. Follow the instructions for online donations.

Jackie Roberts is hosting a MStery party, called 'Festa per la Salute' (Party for Health) at The Pink Door in Seattle on June 27, 2010. The cost is $100 per ticket, and 70% of the ticket price will be donated to BNAC. In addition, participants can make a tax-deductible donation directy to BNAC at the party. For more information: Jackie's Pink Door Party.

Flowers 4 MS is supporting BNAC in a big way. Angela has raised, at last count, over $6,000 for BNAC. I ordered a t-shirt and cards from her recently, and am impressed with her fundraising efforts. She is an amazing woman, and has some great Italian to English translations of important CCSVI documents out of Italy on her Flowers 4 MS Facebook page.. Back to the fundraising: if you'd like to support Flowers 4 MS and BNAC, here is her site where you can order beautiful greeting cards, t-shirts and other items: Flowers 4 MS.

Stay tuned for more posts. I'll be expanding my site by adding a few pages (for example see the 'honeybees' placeholder at the top...) and will have a page that is dedicated to fundraising.

Thanks for your support!