Ketamine Cam: 11.19.10, Day 3 of 3

I tried... this time i even used you tube's video record format . ugggh. what is this world coming too?

See yinz in 'da burgh an''at.

Ketamine 2: Week 2 in the Reclining Saddle again

and....

Ketamine Cam: Day 5, Friday, May 6, 2010

I almost typed that it was 2015, not a wall street bubblegum thumb-o just a mel-o-neuro...but alas, I almost lucid enough to catch my own bottom breaking catastrophes, or at least i have the doctors who can point me in the right direction.

Todays' cam includes a mom cameo and no unintentional videotaping screw-ups, so sit back, relax, take an ativan if your doc prescribes and enjoy the ride...

Ketamine Cam: Day 4, Thursday, May 6, 2010

Yet again...only this time it is a video biopic a monther doesn't love....



except she doesn't have to worry about it, because cuckoo mel messed up again. Let's hope tomorrow is better. The jist of the video per mama mel's memory (since mine is rendereded useless x2) is:

1. i'm soooooooooooo thrilled to have my mother here
2. all you gimpee mamas and gimplessee mamas better take heed from my mama and clean your adult child's apartment and help them take care of the 3 full-time jobs of being a professional sicko
3. and ooooooh don't you wish you were me....or at least me on my newest treatment lalalaland IV Ketamine

Ketamine Cam: A Video Biopic Only a Mother Could Love

IV Ketamine for RSD aka CRPS

Yesterday I Walked. Today I Tripped. Tomorrow...

...I'll be tripping my swollen body off again from the experimental ketamine infusion treatment that I began today to combat neuro disorder #4: RSD/CRPS. The good news, I'm in the hands of the world's most competent ketamine infu-sycian - my neurologist, Dr. Schwartzman.

If only I could record my thoughts and visions during any 1 of the 10 4-hour treatment sessions - I'd be the most prolific gimp writer this world has ever known, but, alas the ketamine/versad infusion doesn't welcome the use of the body in time with the mind.

Anecdotally, what made my treatment super trippy was the music: circa 1980/90's from Erasure to The Cure to Smashing Pumpkins and some hard rock band that begins with T that I can't remember. Envision underground/alternative meets strip joint/under-aged dance club for girls wearing black and white striped thigh highs (yes they were in style 20 years ago too) and boys wearing black nail polish and combat boots (another fashion that has made its debut more than once). I won't get into any more detail on this coinkydink - but it made the treatment all the more nostalgic errrrrr ummmmm.


AND THEN THERE WAS THE WALK
Yep. We did it. Walking and wheel-chairing (I think I made about 1.3 miles of the 4 upright).

And we're still doing it. We're still raising money for MS, believe it or not. Donations are still coming in, and if someone were to graciously donate $140 to me personally, I would become the #5 top individual fundraisers.

Thanks to teammate and former classmate and roommate Kathy - straight from the ocean waves of Wilmingon, NC - our team brisked the 4 mile runway in original Mel's Neuro Detour F**K MS, TM, and RSD matching tees. (And you can too, we have some extras).

Our small but valiant team, including members from Brooklyn (Rob, pictured behind me) to New Mexico (Ty) in the flesh!!! - friends of 20 years or more, mixed in with new friends from my new Philly home who will hopefully continue to be with us for what is our new annual meeting grounds regardless of zip code.

My post-trippy point, is that we rocked the MS Walk 2010 with grace, poise, comaraderie, hope, and more money than I ever was able to raise from a Junction Dance Theatre fundraiser!


TOMORROW, as in, NEXT YEAR TOMORROW
We've committed to reconvening next year, and to increase our cast and crew, so mark your calendars now, so we can move from Top Team #9 to 5 (trust me, we'll never beat #1 - they have us by 140 helpful teenagers).


TOMORROW, as in, TOMORROW TOMORROW
This sloppy, occasionally slapstick post is probably all you can expect from trippy old-bones mel for the next couple of weeks. Tho, if I had the energy following treatments it would do my writer's pen justice to record my visions.

I'm already feeling some relief in pain, and fat face is depleting, yay yay yay. Let's hope this continues, because not all RSDSers respond to this treatment (which, Aetna, my insurance will not cover BTW...surprise, surprise).

So...my visions and I will see you in a few weeks, and if we meet again sooner, won't that be nice.

Quick, painful, artful, philanthropical, update..

It's been a while...again. And I'm more than under the weather, so I'm going to make this update as efficient and succinct as this verbose neuro girl can muster.

1. I'm in the midst of a full-body RSD aka CRPS flare-up
2. I have gained 21 pounds of pure swelling and cannot use my left hand or be touched anywhere from the waist up.
3. I have several extra faces for sale, but they are very expensive.
   
4. Aetna denied my doctor's orders for a 5-6-day hospital stay.
5. I'll be starting a trippy, 10-day regimen of out-patient IV Ketamine once all the psych and cardiology clearances come through
6. I was hospitalized for 9 days in February for an MS exacerbation
7. I had a surgery to implant a fistula (see video in 2.11.10 post) that, once matured, will replace the death trap permacath attached to my sternum and last working jugular vein
8. I've started a new art series for Mother's Day gifts
9. I am doing the MS Walk on May 2 at the Art Museum in Philly....hopefully by cane or by wheels to the finish line
10. Our team, Mel's Neuro Detour, is accepting new team members to walk with us, so JOIN NOW!!!!!
    
11. We are also graciously accepting donations to the team or to individual team members (like me)
12. I have already raised double my goal...which means I will be tripling it, and our team has reached our original goal of $2008 (the year I became a neuro-sicko), so I'll be raising that number too. We only have 11 days left, so keep the funds a-comin'
13. If you plan to join the team, we are each purchasing our own $20 Mel's Neuro Detour/F**K neuro disorder T-shirt, artfully designed by team member Kathryn Babson, who is making the long journey from Wilmington, North Carolina for the walk. If you haven't sent your T-shirt size to Kathy, please do it today before it's too late.
    

Take Action...There's Hope for Myelin Repair

This just in from the Myelin Repair Foundation

Bottom line:
Myelin Repair = Spinal Chord Disability Extinguished. Wow.

Top shelf:
All donations are matched - kind of like doing birthday party shots.

Who knows:
I'm just doing my job here of spreading the word. It's up to you to make the decision if this is a clinical trial you'd like to support. If I had even an extra $10, I'd chip in...but I don't. My feeling: it's worth the investment. Multiple Sclerosis (MS) is not the only demyelinating disease out there. Transverse Myelitis (TM) fits the bill too.

The Call to Action:
(copied from the Myelin Repair Foundation Web site)

Help Us Raise $100K to Fight MS!

Steve Miller, Ph.D.
MRF Principal Investigator

Myelin Repair Foundation (MRF) wants to fund a clinical trial for a promising way to treat MS -- by "tricking" MS patients' immune systems into not attacking their myelin.

MRF Principal Investigator Steve Miller, Professor of Biomedical Sciences from Northwestern University, has a promising idea for an MS treatment.

In multiple sclerosis, the immune system sees myelin proteins as foreign material and attacks them. Recent research indicates that we may be able to "trick" the immune system into believing that the myelin protein is not a foreign material.

Bringing this idea to a clinical trial will help us determine whether this innovative treatment is safe and effective for MS patients.

Visualization of myelin protein attacked by T-Cells

MRF needs your help to make this clinical trial a reality.

Help us raise $100,000 to fund this trial.

The total cost is over $2 million. However, through collaborations with other funders, the MRF is providing only $200,000 for the trial over the next two years. ($100,000 for the first year and $100,000 for the second year).

Donate today. Help us reach the goal of $100,000 by June 30, 2009.

Your contributions to the clinical trial will be matched 100% thanks to another generous donor, bringing us straight to the finish line!

Spread the word to 10 friends and family about the potential of this clinical trial and help us spread the word to more people.

Scott Johnson
President
Myelin Repair Foundation

Notes: This is an early stage clinical trial being conducted in one research institution. All clinical trial patients have already been selected.

If for some reason the clinical trial does not move forward as planned, you can be assured that 100% of your donation will be used to support other myelin repair research conducted by the MRF.

Learn More:

• Research behind the Clinical Trial
• Myelin Repair Foundation's Efforts to Accelerate Research with Clinical Trials

Donate Today

Show your support for speeding up research on MS by funding our clinical trial!

Use the widget above to help spread the word.

Tell Ten Friends and Family

Tell friends and family about Myelin Repair Foundation's promising clinical trial. Encourage them to learn more about our work and donate to help raise $100K!

Register for our e-Newsletter

Learn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.

The Myelin Repair Foundation is the only organization exclusively devoted to investigating the way in which the body creates and repairs myelin — one of the most promising approaches to treating MS

***