Friday, October 22, 2010

Back to the Starting Point

Well I’m pretty much back to where I was before going to Poland for the venoplasty procedure. My symptoms are the same as they were pre-Poland.

It has been quite an adventure with twists and turns at unexpected moments. Despite my best efforts to stay equally content with any outcome, I certainly felt excited when I had improvements and confused when I experienced a couple steps forward followed by a step backward.

I’m trying to not get discouraged because I think my improvements, although short-lived, indicate that there’s hope. Since the procedure helped me for a few months I’d like to find a way to have another treatment that makes the positive changes permanent.

Slowly the reality is setting in that I’m back to the baseline of where I started from. Sure I’m bummed that improvements didn’t stay longer. It was nice living with more cognitive abilities, more energy and not feeling overwhelmed when there more than two people in the room with me. I even went to a museum and wasn’t over-stimulated by the masses of people there!

I went into this saying that as long as it didn’t make me worse, and hopefully would stop progression of the illness, I’d be okay. So I’m sticking to my beginning premise just as my symptoms have returned to their original starting point.

Tuesday, October 5, 2010

Dissolvable Stents!

Abbott Labs is enrolling patients in Europe for Phase 2 trials of a dissolvable stent for arteries. I mention this because this stent could be quite useful for people with CCSVI (and MS).

The resorbable (yes, that's a word) stents are made of corn starch and after two to three years will biodegrade completely. At least that's what the manufacturer intends, and the trials will confirm if the stents disappear in fact.

Since my improvements are slipping away I've begun to read more and more about the options available to me. In particular, I'm trying to get as much information on the potential risks and benefits. There isn't a lot of data to pore over, and I'm constantly reminded of my status as "guinea pig."

Unless I would prefer to take on the role of tortoise and slowly crawl down the path as I grow older and rabbits hurry past me. I could watch as the world around me moves forward with CCSVI treatments. I don't have anything against tortoises mind you, but moving at their speed can be as painful as living with a chronic illness.

So dissolvable stents would take maybe five or six years to get through trials if things go smoothly and would then need FDA approval. Did I forget to mention that the current trials involve stents placed in arteries, not veins? But perhaps using the stents off-label would ensue after a period of time if all goes well.

Alternative options for my second procedure could involve venoplasty with a large size balloon. Dr. Tariq Sinan has had some success with this procedure and may share some clinical data about his work in Kuwait. My concern is about over stretching veins that have thin walls (unlike arteries that have thick walls).

I'm publishing this post without leaving it to marinate in juice overnight and then edit the words after a good night's sleep. True, you caught me feeling cynical about the attractiveness of any potential options for me right now. I try not to write when I'm not feeling optimistic, but sometimes I just need to break my own rules.

Wednesday, September 29, 2010

Update Three Months After

Yesterday I took the last pill that I brought back from Poland so it feels like a good time to post an update. I continue to ebb and flow, and thankfully there aren’t any major changes in my health. My day-to-day activities still include gentle yoga, swimming, staying current on CCSVI info and a small assortment of other things.

However, my energy occasionally lets me do two hefty activities in one day. Recently I spoke to a group of yoga teachers about MS and how to instruct students with the disease---the first time I presented to a group of certified teachers! The event went well and I learned from the experience (and so did the others). Fortunately or unfortunately, that same day a workshop was being offered by a different studio on how to teach yoga to students with disabilities---and the presenter had asked me to attend so enrollees could practice on me.

If this combination of events had occurred prior to my procedure in Poland I would have had to choose between the two but now, with the help of a long nap after event #1, I was able to attend event #2. Mind you, I didn’t do much at event #2 except show up---but having enough energy for even that was an improvement over what I could do pre-Poland. The next day I had to nap more to recharge batteries (I didn’t bounce back quickly), but I really hope this energy lasts because it’s nice to participate in life more.

My heat insensitivity remains the same---we’re experiencing a heat wave in California right now and I’m limited to where I can go. If the temperature is over 75degrees I need a fan to keep me cool, and that’s just a temporary solution. Air conditioning keeps my body temperature low enough so I’ve been staying at home most afternoons with the AC on. My misguided (and wacked-out) thermo-regulation seems to be tougher to fix than other symptoms!

Recently I asked for a second opinion on the venography images from the procedure in Poland. This feels like a big step for me. I asked an IR doctor who replied that he could see a persistent problem in the left Internal Jugular even after balloon angioplasty. Yeow.

Next he said that the Azygous looked “suspicious,” in contrast to the doc in Poland who said the Azygous looked fine. I somehow know that I was undertreated (don’t ask me to explain how I know that) but I’m moving cautiously right now in considering more treatment.

I’m not sure that I know enough about the risks and benefits of a second procedure to make an informed decision yet. Plus, I’m not eager to be a guinea-pig again so soon. So I’m going to spend a bit of time reading what I can find on line about second procedures, asking friends about it, and generally mulling it over.

Wednesday, September 15, 2010

I’m still ebbing and flowing. Just when I think the ebb won’t ever end, I start flowing again and feeling better. The good times don’t reach the height of right after the procedure, but I’m still much better than before I went to Poland! As soon as I can explain what’s going on with a bit more clarity of thinking, and perhaps some eloquence if I’m lucky, I’ll post again. Ciao for now.

Wednesday, August 18, 2010


Part 1: EBB
Before I left for Poland I told myself not to expect any improvements in health and just be satisfied with the outcome of the procedure whatever it might be. So when I felt immediate symptom relief from the treatment I was more than simply pleased---I was downright exhilarated. When the improvements continued growing I hoped they would never stop.

For several weeks I didn’t need to use my cane. When going for a swim I could walk cane-free from the locker room to the outdoor pool and back again. I remember enjoying how it felt to slowly swing my arms alongside my body as I stepped with confident gait. Looking around me at trees and flowering bushes was fun, mostly because I didn’t lose my balance when slowly turning my head and shifting gaze with my body in motion. In the parking lot I passed up the opportunity to use a disabled parking space even though it meant I would have to walk a longer distance to the entrance door.

I remember being surprised to see the time of day and realizing that I didn’t need my usual nap. In particular I delighted at finding myself awake and able to be cognitively present in the evening around 7:00, 8:00 and sometimes 9:00 pm. Previously my energy had been so low by 6:00 pm that I rarely did more than stay at home and read after that hour.

Although I’m very glad to have experienced for about four weeks much improved ability to walk, balance, think more clearly, and have greater energy, I went through a difficult time when the symptom relief lessened. After spending a couple days feeling sad, when even swimming wouldn’t snap me out of the blues, I had to admit that I’d become accustomed to my new-found abilities. Since then my life has settled into a familiar pace similar to how things were pre-Poland: I swim, do Gentle Yoga, read, play with my dog and help with CCSVI causes.

Part 2: FLOW
My symptom relief has increased since writing the last Ebb paragraph above, much to my surprise. While trying to understand the reason for the ups and downs of my health I came to the conclusion that I was using a lot of mental energy and not producing any good answers. (I try to steer away from those unsolvable puzzles in my life.)

Today I’m enjoying how I feel and am glad to have a day that provides more symptom relief than last week. It seems as if things are flowing again and I’ll try to use this time on projects that are more difficult (MS forced me to be good at prioritizing)!

One rather challenging task that I’ll spend some time on today is thinking about ways to not repeat the pitfall of disappointment during my Ebb time. Looking at my life realistically, Ebb is just as likely to return as Flow. Just like the cycles of nature, my disease follows a similar pattern of wax and wane. With feet planted firmly on the ground to avoid unrealistic expectations, I’d like to avoid getting the blues next time I wake up with diminished symptom relief.

Perhaps I’ll spend some time reading words of wise elders to hear what others have said about this predicament. I’m certainly not the first person to have encountered it.

What an incredible journey continues to unfold.

Sunday, August 1, 2010

Went to a Fiesta today and unfortunately had to leave soon after arriving because I overheated! As I'm munching on chips, guacamole and sipping on pepsi the sun starts beating down on my legs. Sadly the party had few seats in the shade and mine was becoming indundated with sunshine.

Long story short, Chris and I headed home much sooner than desired. And here I sit at my keyboard with the central AC keeping me functioning. This was the first time since Poland that I couldn't avoid heat despite my attempts to plan ahead.

To answer the question in the forefront of your mind, "No, the CCSVI procedure didn't get rid of my heat sensitivity!" I'm better right now with some symptom relief but I still completely shut down physically and mentally when my core body temperature goes up too high.

Here's what's in the forefront of my mind: If some people think that my improvements aren't real but just placebo, then is my continuing heat sensitivity also fake? If some symptoms are placebo, then symptoms that remain bad are the flip side of the same coin: All in my Head.

I only wish it were so.

Friday, July 30, 2010

It has been four weeks since I was discharged from the hospital in Chrzanow, Poland, and I continue to feel positive symptom relief---not quite as much as before but still a lot! As I was telling a good friend this morning, I need a certain amount of routine in my life and this week I finally felt like it was back. While trying to measure how I’m doing post Poland, I can use my routine as a barometer to help gauge the ups and downs of symptoms.

My ability to walk has improved, based on the fact that I used my rollator only once this past week (to go through a museum), and didn’t use my cane at all. I confess that I wanted my cane a couple times when ambulating down an Oakland sidewalk that was less than ADA compliant for wheelchairs or wobbly walkers like me. At moments I feel like I’m learning to walk all over again, remembering to swing the opposing arm in sync with the striding leg, all the while attempting to look up not down. Learning to walk isn’t easy at my age!

Balance improvement has made it possible for me to walk without assistance. If I was as dizzy-headed as pre-Poland this conversation wouldn’t even be happening. So my balance is better when I move my head and try to keep focused throughout the movement. Driving in a fast-moving car four weeks ago as I returned to the hotel from hospital, I could look out the windows quickly moving my gaze left and right and left again---with no dizziness or overstimulation of senses. I tried doing the same movement earlier this week and it felt okay but not quite as strong as four weeks ago. But still, to be able to do that was improvement from pre-Poland days.

Fatigue is noticeably less, especially after completing some of my usual activities, for example teaching a Gentle Yoga class. At the end of class I used to be tired and ready to lay down on my matt, but of course waited until all the students were gone. This week I didn’t feel quite as tired. The class still challenged my energy reserves but much less than previously. How nice.

My cog fog comes and goes these days. It shows up when I’m tired, at which time I go to nap, or if it’s night I go off to sleep. The symptom still controls a lot of how I live my life but thankfully isn’t as demanding as before. As I said to friends yesterday, it’s nice to be able to think better.

I honestly can’t tell if improvement is continuing to happen. I’m hoping it is, but accept whatever route my healing path takes. I’ll do my best with what I’m given and try to help others when I can, but for today I’m just celebrating four weeks of improved health and happiness. Cheers.

Tuesday, July 27, 2010

More good news: Dr. Salvatore Sclafani organized a symposium on CCSVI to bring folks together to dialogue on this important topic. The event was held yesterday and you can find good info about the presentations on Wheelchair Kamikaze's blog (go to my Followers and click on WK's icon). I hope the event helps move the ball forward for people with MS!

By-the-way, I'm still experiencing some positive symptom relief and plan to write more about it. At the moment I'm trying to research how to remove iron deposits that may have built up in tissue near (or in?) my brain. If anyone reading this has a experience with chelating iron, please leave me a comment below. Many thanks!

Monday, July 26, 2010

Here's a great website about CCSVI that has lots of info:

Saturday, July 17, 2010

It has been two weeks since my venoplasty procedure and I’m feeling good. I’ve experienced significant symptom relief and the positive changes continue to accrue (I’m waiting to write about the latter until I can describe them better).

One thing is quite clear to me now: my symptoms can be lessened by treating the illness as a problem in my veins. I’m not trying to analyze or understand the disease and I’m not exactly sure what to call it in fact. As a person living with things that don’t work well in my physical body and parts of my brain, I’m just shooting for maximum symptom relief!

Of course, I’ll be reading and asking questions about how to undo the damage caused by all the years I’ve carried this problem in my body and brain. At the moment I barely know where to start: iron deposit removal, chelation, poorly oxygenated blood issues, or something else entirely?

Just to be able to sit here and keyboard my thoughts without battling thick, dense layers upon layers of cog fog, that only two weeks ago I had to cut through with a sharp blade but can now barely see at the periphery of my thinking, is such a joy. I am truly thankful for that. My spiritual leanings show me that, in the end, I am not my body nor my brain---but I admit it is much easier for me to function in this world with a brain that can handle issues better and, yes, a body better equipped for life’s challenges.

In the coming days I’ll be helping host a fundraising dinner for Dr. Michael Dake’s CCSVI clinical trial. As part of a group of people with MS trying to advocate for more CCSVI research and treatment, I would like to assist Dr. Dake’s efforts in launching a trial at Stanford University Hospital where he works as Professor of Cardiothoracic Surgery. The event is scheduled for Saturday, August 14, 2010 in Albany, California with Dr. Dake in attendance as the guest speaker.

This is a very important effort for patients worldwide! If you’d like to contribute to the fundraiser please comment on this post and I’ll send you all the details.

Tuesday, July 13, 2010

Today was my first day back in action after the cold subsided. I taught a Gentle Healing Yoga class and my voice held up for about 70 minutes, and then started crackling. Or so says Chris who escorted me to the studio and assisted with prop placement (and then joined in as a student). Actually I think he was there to be sure I didn't overdo it!

It felt good to make it through a whole class and feel peaceful at the end. I had four new students and one who I knew from before. The range of familiarity with yoga, and comfort with moving in and out of gentle poses, was quite wide. But the props helped me keep all of the students doing the same pose at about the same time. Never a dull moment!

I'm feeling better than yesterday although still somewhat slower than before the onset of the cold. I plan on taking it easy for the rest of the day, playing with Pickle (my dog), answering emails, and just recharging my batteries for whatever tomorrow may bring.

Monday, July 12, 2010

This was the worst cold I've had in decades. Thankfully it's almost out of my system and I'm looking forward to being able to leave the house soon. I've been under house arrest since last Monday when the cold symptoms started showing up!

The MS symptom relief that I had experienced feels somewhat less now. I'm moving and thinking slower---due to the cold or due to MS, who knows? So it seems like a small step backward has occurred.

Some people who post about their symptoms after having the CCSVI procedure say they experienced two steps forward, one step back. I'm okay with that if it ends up being forward progress all-in-all.

Right now I'm experiencing the one step back and don't have assurances that I'll move forward again. So I'm back to keeping fingers crossed. (I seem to be doing a lot of that.)

Or you can say that I'm being "Cautiously Optimistic." Like I mentioned in a previous post, I've said goodbye to Eeyore's moaning or Pollyanna's unrealistic thinking. Right here, right now I prefer being cautiously optimistic.

Thursday, July 8, 2010

Good news is that my post procedure headache that travelled home with me from Poland has left but bad news is that I've caught a cold. It seems like I've been sentenced to forced bed rest for several days---which may actually be helpful for me right now!

I'm keeping my fingers crossed that when the cold goes away I'll still feel the symptom benefits that I experienced during and immediately after the procedure. Right now I just feel like I have a cold and can't judge about my MS symptoms! (Sneeze, sneeze, cough, cough.)

It was really cool to see the movie of my Venoplasty. The CD of moving images shows my blood neatly flowing through the Left Internal Jugular Vein and, at a specific spot, gushing out in many different directions. Another image shows the balloon that was inflated at that problem site---how exciting to see!

In a post-ballooning image I can see the Right Internal Jugular fairly well with blood flowing as a consistent "unit" that maintains its width. There may be collaterals but if there are I can't see them. I don't have any images of my Azygous, which I was told is fine, so I'm pleased with the movie of my Trip to Poland just the way it is.

I can't say that I'm settled back into life at home yet. The main reason isn't the cold as much as the missing my friends from Tychy (pronounced like ten-hen without the n's).

The group of us were staying at the same hotel for the same purpose, eating breakfast and sometimes dinner together, watching World Cup games together and generally sharing information and support for each other. It's rare that I find a network of caring individuals as strong as the one in Tychy and I miss my friends quite a bit now.

I'll try to post a few pics when I can but I'm off to nap for now.

Sunday, July 4, 2010

Happy Independence Day! I'm back from Poland and feeling positive symptom relief (warmer hands, cognitive improvement and info processing improvement). Yesterday morning before leaving for the Katowice Airport I bent down to reach for my purse on the floor and as I moved my head back up I didn't feel much loss of equilibrium. That's new symptom relief for me and I hope it stays.

The time spent in Poland was an experience that I can barely describe in words. Of course the tourist adventures are easily related in familiar vocabulary but many of the medical moments sound unbelievable when I sit down to write about them.

My father commented about the newfound warmth in my hands as a romantic episode to find improved warmth as I sat on a hospital bed fondly holding my husband's hands. (I never knew my dad had that side to him!) I'll borrow that prose from my dad since I'm searching for the right words here and now.

Realizing that I was thinking more clearly as I lay prone under the OR equipment defies adequate description. Please note that at that instant there were three male doctors speaking quickly in Polish to collaborate near my right femur to correctly thread a catheter through my veins---and I hadn't asked for sedation of any kind. Before stumbling over my words any more, I'll conclude with saying that going to Poland was an exceptional experience and I'm likely to be talking about it much, much more.

Thank you Carol and Jeanee for your supportive comments, and to everyone else reading these posts. Happy Independence Day to all!

Friday, July 2, 2010

I had my Left Internal Jugular Vein angioplastied yesterday and have felt some good results. My hands became warm soon after the "ballooning" part of the procedure was complete. While I was on the Operating Table I had a sense of the fog lifting from my brain---and I could think clearly again. It was rather strange to be under this huge piece of medical/radiological equipment with three doctors, many assistants all around and while looking up at the ceiling have this incredible sense of: Wow, I can think well again!

I have no idea if this will last but I'm enjoying every moment of cognitive health. It's been difficult to accept a steady course of dulling of my thinking ability and that's one of the main reasons why I I decided to come to Poland for CCSVI treatment. It's been less than 24 hours since the event and I'm needing sleep so I'll sign off now:)

Thursday, July 1, 2010

Today is the day for my CCSVI procedure. I feel this is a fortuitous day because a member of our group here announced that B. B. Lee, MD had a peer reviewed article about CCSVI published in a recent medical journal. Dr. Lee is managing a clinical trial for patients in Georgetown near D.C. and is a well respected vascular specialist (I believe that's his specialty).

It feels good to hear of more acceptance of what I'm just about to undergo through a doctor publishing a professionally accepted writing on the subject. Maybe other people with MS won't need to travel as far as I have to be treated in the future.

I'm not going to wax poetic today---my emotions are a bit ajumble (I made up that word---eh) but I'm still confident about staying on this path I'm treading. Ciao for now.

Tuesday, June 29, 2010

I made it all the way to Poland and am very glad to be here. The hotel where I'm staying is full of people diagnosed with MS from many walks of life and different countries of origin. As an American I find myself in the minority with most hotel guests coming from various Canadian provinces. We're share a common goal that is to get testing and treatment for our illness (whatever you might call it).

After I arrived (I should say "we" since my husband is joining in this unusual adventure) I found out that I had a free day to roam about Poland. Sharing a taxi with another couple, we travelled to Krakow to explore the city where Copernicus studied for some years. We meandered around the old, historic part of the city which left me quite speechless at moments.

If only to imagine that Copernicus may have walked down the same street that I was on made me feel very humble. Chopin, also from Poland originally, appears loved by the city with signs bearing his name on every corner---I think to advertise concerts. (The language is pretty tough for me to decipher.)

The central plaza or piazza if-you-will was in good condition as Krakow was spared the fate of destruction (and rebuilding) that most other Polish cities endured. There were other tourists milling about but most spoke (and looked) Polish. We enjoyed sharing streets with people native to the country if only to feel less like tourists than adventurists (that might not be a word in the dictionary but it sounds right to me)!

After returning by taxi with Derek driving and juggling incoming calls on three cell phones, I was glad to relax in the hotel for a bit of time. I met up with guests who had undergone the procedure called venography to doctors and "liberation" to others, sitting in on their talks about being angioplastied or stented. Acting like a sponge, I tried to soak in as much info as possible in order to make intelligent decisions on how (or if) I should proceed.

Although the journey has been enjoyable thus far, I am always aware of my purpose in coming to this distant land. As I said in an earlier post I've wanted to trace the roots of my family but I would have likely begun in Germany if given a choice (though not the tremendous Frankfurt airport that I had to pass through before flying to Poland)! So I'm very glad to be here but haven't forgotten about my travel baggage of potential medical treatment.

Friday, June 18, 2010

I started this blog with a post saying that the jigsaw puzzle pieces of my life were falling into place at that time. Taking small but confident steps (which describes my current way of moving through the world both physically and metaphorically) I'm witnessing more pieces settling in exactly where they fit.

For instance, I've wanted to trace my "roots" and see the cities that my ancestors inhabited. Well the visit to Poland may give me a chance to do that. As I was rummaging through some old notes about my grandparents I was reminded that my grandmother may have come from Silesia---the region of Poland that I'm visiting.

My grandmother seemed ahead of her time as a woman scientist to earn a graduate degree in Chemistry (I think) around the start of the 20th century. I'll do more research on Silesia but it appears to value education for men and women. My grandmother was also an artist but I may write a separate post on that!

The University of Silesia Hospital in Tychy is where I've been told I may stay one night if I have the procedure done on me. This may sound odd but I'm comforted by knowing that I may be in a University hospital that, although my grandmother never saw, is in the general vicinity of where she may have studied as a young woman.

Tuesday, June 1, 2010

Change is Hard

Change is hard. Especially when I don’t know what the change will be like. I’m due to go to Poland for CCSVI testing and possible treatment and I keep wondering if it will (a) improve my health, (b) make it worse, or (c) have absolutely no effect at all.

Prior to getting an appointment in Poland I tried to go local in order to help more folks with MS get treatment nearby. I set up an appointment with a doc about 180 miles away who agreed to give me a “second opinion” on my symptoms. That 180 mile journey was considered local only because practically no one else in the area is doing testing or procedures for CCSVI. I planned on asking him to see if my veins looked problematic.

When he cancelled on me I had to rethink my approach. I called Stanford University Hospital to get information on the clinical trial due to happen there. My name had been put on their long waiting list and I hadn’t heard from them for some time, so I requested a status update. Although the trial was due to start in the coming months, the doctor was not doing CCSVI treatments for anyone outside of the trial, and selected patients would be notified when they were chosen.

Okay, it was time to reassess my strategy of staying close to home. Was I really helping anyone by staying in ill health without trying my best to improve? “No,” was my answer to myself. It would be wiser to put my effort toward getting the best treatment that I could (and that I could get an appointment for), and afterwards help other people.

Now I’m planning for a trip to Poland to be tested and perhaps treated for vein blockages! Up to six months ago I had become resigned to living a life of gradual downhill progress until I heard about CCSVI. Nothing may change when I’m in Poland but at least I’ll have tried to improve my situation. As a friend said to me: It helps to take control over the treatment of illness if only to boost a sense of empowerment. It has taken me weeks to write a few paragraphs about what I’m going through, and now that I’ve published this to my blog it seems like my friend was right. Regardless of the outcome I’m not stuck in wondering “What if I had…”

Tuesday, May 4, 2010

Eeyore and Pollyanna Go on a Cruise

If I could just get my expectations out of the way, life would be much easier. I often think about sending my expections away for a holiday cruise on a ship that never returns. The expectations may take the form of a well-known historic person or fictional personage and I could say goodbye to them while standing at the pier.

My expectation that my MS symptoms will never loosen their grip sounds like Eeyore to me----you remember, the donkey from Winnie-the-Pooh. He's always grumbling and moaning about how bad everything is. As he climbs aboard the cruise ship still complaining, I would wave au revoir.

When I read about CCSVI I sometimes fantasize that I'll have a procedure done and all my MS symptoms will suddenly disappear. That sounds like the movie character Pollyanna played by Hayley Mills who, when faced with a potentially bad situation, proclaims that everything will come out perfectly fine. I'll wave arrivederci to her too.

Expectations don't exist in present time. Of course my mind creates the thoughts and when I catch myself musing over them, it is very present time. However, the expectations are about events occuring in the future. And I don't have the ability to see into the future, so my expectations are really just dreams or meanderings of my train of thoughts. Some are good and some nightmarish.

Whenever I go to a yoga class I make a concerted effort to banish all expectations from mind. Otherwise my ability to be present and participate in a meaningful way goes out the window. Most often I really benefit from yoga class and, at the conclusion, feel so much calmer in body and mind. Could it be that because I entered into the activity without preconceived notions of how I would feel during and after, the result of the endeavor was fine?

Who knows if that's true but I'll continue waving goodbye to Eeyore and Pollyanna before yoga class.

Friday, April 30, 2010

It's Hip To Be Ethical

It's hip to be ethical in my world. Sticking to core values that guide me through difficult decisions, I'm able to feel good about actions that I take. This means a lot because otherwise I would be just copying everybody else without thinking about what I was doing or having an awareness of how my behavior might impact someone else. That's not cool.

When faced with an important decision I ask myself:

Will this action do harm to any person or animal?
Am I being truthful with my words?
Is my action taking something that doesn't belong to me?
What role does greed play in this activity?

I won't list them all, but I ask myself a short series of questions before coming to a final decision. Sometimes I feel like these considerations take an enormous amount of time to ponder. Often I want to jump to a conclusion and just get on with it, whatever it may be.

Whoa, slow inner voice says to me. Be cool. What if someone else was about to do this and you were witness or victim (intended or not) how would you feel?

So I slow down again and ponder. Taking a deep breath or two, I chill. Then I find my way to the right action.

This past week has been tumultuous. Finding my way to a good decision required extraordinary pondering, or hipness I should say. I'm all chilled out.

Thursday, April 22, 2010

I Live Where Accepting Alternatives Is Almost a Requirement for Check Approval

One of the strengths I bring to any discussion on CCSVI and MS is my status as "elder." Not because of my age (52) as much as from the 22 1/2 years since diagnosis. Part of the value of my perspective on new ideas and theories about MS lies in the many years that I've lived with an illness that hasn't gone away.

Every time I said that a symptom was bugging me and wished it would just leave, my oldest sister would say something like: "...that's what we mean by 'chronic' disease." At first I rebelled against that viewpoint thinking that it would be healthier for me to keep thinking that I could easily get rid of symptoms. Healthy denial seems to be the term for that.

I've always wanted to be able to play tennis again. Often I would use that desire to keep an upbeat attitude as I read about new findings on MS. It never was comfortable to think that my last tennis match could be truly the last one I'd ever play. In so many ways that healthy denial helped me keep an open mind when I researched anything new on the therapy and drug horizons.

Integrative treatments assisted my development as much as conventional medicine did. Living in the San Francisco Bay Area where keeping an open mind to alternative wisdom is almost a requirement for check approval, I tried a lot of things. Some actually helped my symptoms: bee stings (part of Traditional Chinese Medicine for many centuries I learned), acupressure (Acupuncture without the needles), and more. I used to call them Alternative, then Complementary, but now call them Integrative Medicine and I still read up on them.

I have switched many of the Integrative Therapies over time eliminating some that ceased to be effective for me (bee stings) while taking on new ones that worked (gentle yoga). As the years rolled by and my symptoms worsened despite my best, forward-thinking efforts I slowly became settled into my life as a person with a chronic illness. The transition came slowly and subtly almost like the fog creeping in from the Bay that eludes notice until it shrouds you in its veils of white.

The fog in my thinking crept quietly into my life without a grand entrance; it whispered that I had few choices that would make any difference. I stayed on FDA approved drugs, saw my doctors regularly (the number of specialists kept increasing to my dismay), and slowly it became easier to just agree with conventional wisdom. I thought it best for my health since nothing got better anyway.

Contentment has a valued place in my life if it actually helps me. Mind you, there's a big difference between contentment and complacency. I've been doing gentle yoga for eleven or twelve years now and it has provided tools to keep me calm in stressful situations. There are many healing aspects to the daily practice of yoga that I plan to keep as a continuing therapy in my life. If only to maintain a calm, steady mind I plan to get down on my matt for as long as I am able to. And if I can't get on my matt I'll practice in bed!

One of my yoga teachers told me about the CCSVI broadcast on a Canadian network that aired in January. Viewing that segment featuring Dr. Zamboni rocked me out of the rut of complacency that I had fallen into. At this time I don't know where the path will lead in my healing journey but I definitely want to keep the tools of contentment and stay away from complacency.

Tuesday, April 20, 2010

A Dash of Hope

Like a spice to be sprinkled over my food, I need some hope right now to make my life more palatable. I've been researching CCSVI (Chronic Cerebrospinal Venous Insufficiency) and contacted a few doctors but haven't received any exciting responses. Unless you consider notification that I'm on a waiting list as "exciting."

Until a few months ago I had no hope. It wasn't as depressing as it sounds---I simply had accepted a fate of slowly going downhill with my symptoms. I had become used to planning my daily activities in segments that lasted no longer than three hours door-to-door. Because my short-term memory was so bad, I carried paper and pencil around everywhere I went (it was how I could be sure something important wouldn't be lost in my unreliable memory bank). All the adaptations I made were completely woven into my life in a way that I thought was permanent.

However, after hearing about some of the improvements gained by patients treated for CCSVI I regained some hope. Life tastes slightly better these days. It may be a fleeting feeling but for right now I'm enjoying a dash of hope.

Friday, April 16, 2010

Starting to Speak Up More

The jigsaw puzzle pieces of my life seem to be falling into place these days so I'm speaking up more. Since everything in my life is temporary it's quite likely that some pieces in the puzzle will go missing in the future. But for now, things are staying where they landed and the puzzle looks nice. More will be revealed.