More than MS?

Although some snow was flying for part of the morning, spring is here. The courageous snowdrops by the door are old news and a solitary crocus and pinpoints of periwinkle tell me that we are truly moving forward in the season.

Many difficult conversations begin with a weather discussion—don’t you think that peculiar? When what needs to be said hangs heavy, waiting–until the talk about temperature, wind speed, and humidity is complete. And here is the part where my thoughts diverge: to tell what I feel or what I want to feel? My family would likely comment that I am a straight-shooter and not able to act a way that I don’t feel, so I guess my path is already worn.
Since January I have had 33 tubes of blood drawn. I guess the good things about that are: I didn’t come close to fainting, even when 16 tubes were drawn at once. Those were ordered by a rheumatologist that I had to see after having a strange thing happen to my toes. Let’s just say that there were spots, madly reddish-purple spots, with swelling and tenderness. The second good thing about having all that blood taken, is that I can say that with some swagger and elicit some great responses from an unsuspecting listener.

The kind doctor called last week, and immediately proceeded to tell me about my abnormal test results. Since my life’s objective is to FEEL BETTER (I have other objectives too, but if I can’t reach that one, then the others might be moot.), I was hoping that all those lab tests would show something that was an easy fix. I wanted a simple answer or a quick round of pills. But no.

The results indicated a type of auto-immune illness. (I don’t say ‘another’ because I am not believing fully the autoimmune theory of MS) The tests prompted the doctor to look at my last brain MRI and contact my neurologist to tell her that perhaps what has been labeled “MS” has really not been MS, but lupus. Lupoid sclerosis is the term she used– a kooky phrase that indicates a fusion of MS + lupus. My neurologist was adamant that my MS was really MS and that the lupus was just another diagnosis, separate. Like a bonus. But then there was more–a coagulation problem that indicates lupus, and adds a high risk of blood clots. It was then that I felt a bit like fainting, because, you see, I have a fear of having too many diagnoses to carry.

The blood tests have to be repeated in 12 weeks according to diagnostic protocol, and then, “We’ll see.” I am lingering in that land of waiting to see, but I am not a good waiter at all. I’m busy looking for other answers that don’t include more drugs (a favored drug for lupus is one that could cause irreversible eye damage). Mostly I’m trying to stay busy living, which, when done correctly, is the best revenge of all.





Celebrating with an Entry! Happy 2013!!

The thing about writing–a comment, a letter, an article–is that you have to think. Think about what to say and how to say it and who to say it to. And why. You definitely have to think about the why. Sometimes you must think about rules and protocol, and in addition, you wonder if what you say might seem obtuse or be taken the wrong way. Like it or not, writing requires thought. Thinking also involves quietness–a place of calm and serenity where thoughts can dance together and come out in strings of story or pearls of wisdom.


Today, and for a while now, writing has been difficult for me. I am not tired of doing it, nor do I think it a small thing to accomplish it, but it eludes me. I don’t understand why it is hard now, but I think I will blame it on having MS. I have blamed many other things on my condition, and it is not beneath me to use that excuse to benefit myself. Like the time I was walking on the beach in the Outer Banks and a beach patrol said he was giving me a ticket because I was parked in the wrong spot on the sand. Having MS certainly came in handy then—especially when I cried and carried on that I might not be able to walk the beach next year. Because I did it all in a Lucy Ricardo sort of way, I saved myself a lot of money that day, and I have the emotional swing of MS to thank for it.


Sometimes I can’t write because there is just too much to say. The explanations get wordy and need so many rewrites and edits. My thoughts get jumbled and the sentences get scrambled. I get like that with speaking once in a while too. If a story or situation is too complex, I might not venture the telling. Maybe there will be parts that need expounding or maybe I’ll lose my train of thought. Or perhaps I will be too tired. I can certainly blame that on MS!


So now the new year has come. As sure as the ball drops, January brings talk about resolutions. All the conversation—will you? won’t you?—is waning. In the weeks of watching and listening, I’ve noticed that those who DO make resolutions seem to be the go-getters who aren’t daunted by the challenges of changing. They are also the kind of people who don’t care about failing to keep a resolution; it seems to be the trying that matters. Then there are those who DO NOT make resolutions. The most common reason given for that choice is that the resolutions will only be broken. I think that’s a bit defeatist from the start, and that kind of attitude bothers me. I suppose it’s because I find status quo unbearable. Either that, or the non-resolutionists are perfect and don’t need to change. That irks me too. I thought it was intrinsic that everyone has an inner striving to be better. Apparently, I am not right all the time! And to make matters worse, my percentages of being right are falling fast. Can I blame that on MS? I think I can, so I will!


By the way, I am a resolution-maker. MS hasn’t changed that, but it has probably helped seal the deal. Is that another thing to blame on MS? Absolutely!


Happy 14th Anniversary to MY MS

Happy 14th anniversary, contemptible MS of mine.

Let’s celebrate! I’m making you a delicious cake for our special occasion. I’m lacing it with your favorite flavors–the robust poisons of broken dreams and exhausted days. I’ll frost it with that color you love—the gray sludge of brain fog–and I’ll decorate it with your very special symbol–the black rose of slow decay. You will love it!  Eat heartily and enjoy every last crumb, my slimy parasite, because this will be the last time I GIVE you something from me.

There is Hope

When I first received my MS diagnosis in April 1998, I was relieved. Relieved that the symptoms I was experiencing were not from a brain tumor; exonerated from the ‘psychosomatic’ label that I imagined people stamped on me. Multiple sclerosis was presented to me as something that wasn’t a bad diagnosis, but I was too naive to ask, “As compared to what?” I was told that lesions in the brain were caused by the disintegration of the covering of the nerves, and this in turn caused symptoms and deficits of varying degrees. Looking back, my presenting issue was a seizure disorder; then came leg weakness, optic neuritis and sudden deafness in one ear. After that, I had other sensory problems, speech malfunctions and pain. From the beginning, always a debilitating fatigue.

 The course of my relapsing-remitting MS was fairly normal, with exacerbations that required IV steroid infusions, prescriptions that treated symptoms and a daily injectable drug that was believed to be a decoy for the destructive forces attacking my nerve cell coverings. I went to seminars and talks, read books, and listened to my doctor. Even with all I knew about the disease, the real truths of my personal MS were unknown. What caused my MS? When would I have another flare up? Could I prevent a flare? Will I progress slowly or quickly? What daily things can I do to help myself? Sometimes I even dared to ask the idiotic question: Could it be something other than MS? Maybe some of these questions have twirled around in your mind, too.

 Not much has changed in the past fourteen years, it seems. Questions still come pouring from my heart. Doctor visits bring the same answer of We just don’t know. The three or four or six months between visits leaves plenty of time for trying to determine how to help myself. There’s also time to ascertain which new problem is from MS or from a side effect of a drug or from something non-MS related. (Like general aging!) It took me a long time to realize that during the interim, it’s up to me to maintain my quality of life and seek ways to improve it.

Then I got the opportunity to attend a medical conference in Orlando, Florida last month. Doctors and researchers from all over the world came to the scientific meeting of the International Society of NeuroVascular Disease. The first day was Patient Day and the program centered around the topics of MS and CCSVI (Chronic CerebroSpinal Venous Insufficiency which basically means there is a problem with the veins draining the brain and spinal cord). I was excited to learn as much as I could and see if I could find someone to answer my questions, old and new.

 The conference was held at the Orlando Hilton. Dr. Robert Zivadinov from Buffalo spoke first and said that genetics, the Epstein-Barr virus and smoking seem to be contributors to MS. While it has yet to be determined if CCSVI is a disease entity, a syndrome or an inflammatory condition, it is known that the prevalence of CCSVI has found to be greater in people with MS. Research is starting to link CCSVI to other diseases like irritable bowel syndrome, Parkinson’s disease, and other neuromuscular disease. A connection has also been made between Crohn’s disease and having an azygous vein abnormality. (The azygous vein drains part of the chest.)

 Then the “Father of CCSVI”, Dr. Paulo Zamboni, of Ferrare, Italy spoke. I was more than thrilled to see and hear him in person! He explained the research he began to help his wife and how he found a high percentage of people with MS also had problems with their veins. His study, trials, and subsequent findings fueled a revolution of sorts in the MS world. [When news of his findings spread, the social networks were set afire with MS patients demanding information and a treatment that they called the “Liberation Treatment” for its purported ability to free people from the bondage of their MS]. Dr. Zamboni stressed the need for ongoing clinical trials and the importance of having the same protocol to diagnose and treat CCSVI patients. One of the most interesting points he made was that dialysis patients whose jugular vein ports become occluded experience increased fatigue much like MS patients. At the end of the day, I had a photo op with him and babbled like an idiot when he asked my name. Totally, embarrassingly starstruck.

 Dr. E. Mark Haacke spoke of the importance of studying the blood flow, blood volume and iron content of the brain as well as the volume of the cerebrospinal fluid. Now there are imaging techniques that do all of this and more!. MRI is available in 3D; other imaging like Magnetic Resonance Flow Quantification can determine how the blood flows through the brain (and in which direction) and also studies how the blood crosses through the blood-brain barrier. Amazing stuff –and to think that all of it can be used to help us!

 Dr. Bill Code, an anesthesiologist from Canada, spoke about some of the signs of CCSVI caused by too little blood flowing through/out of the brain: fatigue, headache, foggy mind, balance issues, spasticity and sleep disturbances. He discussed the problems of having low blood pressure and ‘thick blood’ and said that if you are found to have CCSVI you are at higher risk for stroke. Dr. Code’s talk was insightful because he has MS and CCSVI which was treated with angioplasty. He was candid in divulging that even though many of his symptoms abated after the angioplasty, some were starting to return after eight months.

 Dr. David Williams, a dentist from Canada, reported some surprising connections between cranial dysfunction and disease. He said that people with MS have been found to have more movement in their skull bones! Some problems associated with MS, such as trigeminal neuralgia and headaches, could result from misalignment of the jaw, teeth clenching or those moving skull bones. He explained that when you sleep, the dominant veins to drain blood from your brain are your internal jugular veins. If you clench your teeth when you sleep, the tremendous amount of pressure exerted can impact the vascular system negatively. Dr. Williams also spoke of the importance of Vitamin D, and talked about the finding of spirochete bacteria in gum disease which was an indication of allergy to metals.

 I listened carefully to all the other speakers and took notes until my brain began to overflow! I got to talk with several of the presenting doctors between sessions and asked many questions, and often their responses were I just don’t know. But because I had watched them and heard their hearts for the whole day, I wasn’t frustrated or saddened by their response. My heart perceived a glow of hope rising off of them; these brilliant men and women are working to find the answers to their questions, and my questions and millions more besides. They believe the answers will come, and come soon, and I can rest in that.

Reluctance to blog

I’ve been reluctant to continue this blog, as you can tell by my recent lack of entries.  I think it started when someone told me the no one reads what I write and that I should never ask people if they read this or my newsletter articles because if those folks say yes, they are lying.  I tried not to care, because I know a few people were reading. Still, I began doubting myself—what did I have to say that was worthwhile?  I started to worry about being preachy or misrepresenting myself.  Additionally, I’ve had a general feeling of being overwhelmed by stuff and bogged down by the enormity of my own pain.  I guess enormity might be overstating, but that’s what it feels like at times. Sometimes the pain isn’t any greater than my normal load of pain; other times it’s an additional emotional pain that adds to the physical. I just don’t know why, but there it is. Poets would call it angst; swimmers would call it a near-drowning.  Whatever it is, or was, I think it’s passed.

And this blog will continue. I will not switch to another ‘new beginning’ and let this shrivel up and die. No, I will not. I will do this for me.

CCSVI: The Saga Continues…

When Dr. Mehta of the Vascular Pavilion in Albany, NY first told me that he and I were going to friends for a long time, I realized he was losing sight of my mission statement: Find out what’s wrong with me, fix it, and let me live my life. Without you.

I went back to see him for a venogram and venoplasty in late September. The plan was to balloon whatever needed opening, and to put in stent(s) where needed.  My speech issues had resolved, but I just wasn’t feeling well– in the MS way, I mean. I was irritable and cranky, and could not snap myself out of it.  The wait in the holding area was long and not eating for 15 hours did not improve my mood.  When I was in the holding area, I was asked to sign the consent form and met with the doctor. He asked for my consent for an extra component* to the procedure, just in case an obstruction made it necessary to visualize the vessels from the brain flowing down. This extra step*, I was told, had a risk of stroke, and the numbers, which I can’t remember right now, were way too high for me, so I declined. The doctor was fine with that (and it turned out to be a moot point later) but it was obvious even to him that my demeanor was, less than stellar. You know when you become aware of being as miserable to yourself as you are to others? That’s what I felt right then, and I didn’t care a bit.

So, the venogram was done, and for the first time I experienced heart palpitations during the procedure. They say it’s from the catheter ‘tickling my heart’.  It was scary and freaky! [I was later told that patients who enter the procedure room with a cranky outlook have a higher incidence of heart flutters. I wonder if that’s really been studied or if it was a dig to my less-than-stellar attitude that day??]  Recovery was uneventful and after about an hour I could sit up, drink and, finally, eat. (15 hours of not eating was unpleasant!)

When the doctor came in, I got the good news/bad news routine. The good: my right internal jugular vein was open and flowing well. The bad: my left IJ vein was closed down. Reopening was attempted but impossible;  stent placement was therefore not possible, either. (I imagined it was like a straw stuck together with a wad of bubble gum. Try to get a smaller straw through that?) There were still  collateral veins open around the blockage, but the flow was not optimal.  The only thing to do–a vein graft.  [I hate to admit it, but I was told that I have one of the worst problem left IJ vein’s he’s seen.]

Vein grafting in the neck is not a common practice, and is mostly done, from what I understand, in patients with neck cancer. And well, for treatment of this ‘new’ CCSVI, it’s virtually unheard of.       [I did hear of one man who had it done at Mayo Clinic a few months ago.]  That said,vein grafting obviously needs to be researched and approved studies need to be done, and that’s where Dr. Mehta is right about now.  And I guess I’m there with him, too.  You know, because we’re friends.

*this extra step is sometimes done when a patient’s veins have restenosed and can’t be assessed by the usual dye flow. It is not, to my knowledge, done during the first venoplasty.

More Than a Medal

Some of you will have seen this in the MS Resources of CNY Newsletter, but I want to make it part of my blog as well:

More Than a Medal

It’s the middle of October and I still have a summer tan– an honest-to-goodness tan. It’s unusual enough that I should write about it here, but the reasons I have it are my real source of personal accomplishment. As always, the story begins long ago….last winter, to be exact.
On one of those cold gray weekend evenings, I was sitting with a group of female friends and relatives happily discussing everything but the dire conditions of the world. Someone mentioned a half marathon relay taking place in Virginia Beach on Labor Day weekend, and we all voiced reasons that it would be a great road trip for us. Reason number one: It was at a beach! Number two: It fell on my mother’s 85th birthday. Three: Since she wasn’t alive to celebrate it, and because she always loved Virginia Beach, then, yes, we should definitely enter. And the last reason, obvious enough: Everything sounds like a great idea when there’s been enough wine! We paired up, went online and signed up for the Rock ‘n’ Roll Virginia Beach Half Marathon Relay.
Back then it was easy for me to go along. I wouldn’t be starting a walking regimen until I finished two months of physical therapy for my neck and back. Then I started walking with the therapist’s recommendations—ten minutes out, ten minutes back, three times a week. Then I was to increase by a couple of minutes each way every week. It seemed like a breeze. Except I didn’t want to walk some days. I was too tired. I had other things I needed to save my energy for. It was rainy. It got hot. I had out-of-town guests. There was always time enough to train–the race was months away.
Then there were times that I doubted my abilities to walk one block—days when my left foot slapped down like it was wearing a scuba fin. I tried to listen to my therapist’s voice: “Just go out and do it.” Nope, didn’t work. Often I expended more energy on finding a reason not to walk, than the actual walking would have used. Some days I convinced myself that I would cause irreparable harm from walking too much. If all of this sounds ridiculous to you, it’s probably because you are self-disciplined and motivated and not a slacking procrastinator like me.
Through this training time, our ten-member team suffered setbacks and obstacles of all kinds: a move out-of-state, a miscarriage, foot surgery, an exploratory laparotomy, a marital separation, a pregnancy and an MS exacerbation thrown in for good measure. The week before our trip, Hurricane Irene struck part of Virginia Beach, and she spawned a tornado that tore off the front of a house  three blocks from our rented beach house. Two days before leaving, we got a call saying that our rental house was uninhabitable due to pests. (This was not a shack–it was a new 9 bedroom, 5 bath house!) Only by the grace of God did we manage to get a substitute place the day before leaving. (That it happened to be oceanfront with an indoor pool was a sweet bonus!)

And so, we all made the pilgrimage to Virginia. The first night in the miracle house we shared the pre-race dinner of macaroni and meatballs (like ‘they’ say you should). The next morning at the ridiculous hour of 4:15 our eight-member team left for the race site. We were shuttled to buses to the different starting points.  There was a smell in the air—adrenaline, excitement, energy! Everyone was riding high, even me.  My half of the team was delivered to the transition zone to wait for our relay partners to come and hand off the baton (which was  a drum stick, not that anyone carried it at all.)

While we waited for more than two hours in that holding area, the adrenaline and energy dissipated.  I started to fear I wouldn’t make it even two miles. Or one.  I mean, we had to walk so far from the first bus to the second bus to that transition zone, and all this waiting was depleting my energy! Was it going to get too hot for me to walk? What if I lagged so far behind  that the van would have to pick me off the course?  Were there enough first aid stations along the way?   I laid back on the walkway and wondered what I had gotten myself into. Who did I think I was to try something like this? And why did I NOT train like I could have? Anxiety washed over me. And then it happened.

I heard some whooping and hollering, and sat up just in time to see the first racers come around the bend. Is that a bike? I didn’t know this was a bike race, too.  No,wait… the bicyclist is with someone in ….a racing wheelchair!! Whoa, I was not expecting that. Everyone was cheering as more and more of these chair-bound athletes came around the curve. I was flooded with emotion—what kind of strength they displayed!   I chided myself for having a defeatist attitude; after all I could walk.  A few minutes later, the first runners started speeding by. As an lifelong non-runner even before I got MS,  I stood amazed, imagining how fun it must be to fly on your feet!  Shortly after they passed, I went back to my little pity party.
While waiting in a long line for the porta-potty (I’m so uncomfortable with these), there arose such an extended cheer that I got out of line to see what it was. Rounding the curve was a runner with a burgundy tee-shirt that read Team Hoyt. And this runner was pushing a race wheelchair decorated with streamers and cradling a youngster. I saw young legs rising out of the chair, as if running through the air. The way they moved I suspected their owner suffered from cerebral palsy?  And I started to sob. Sob, sob, sob.  How could I complain and doubt and deny my abilities in light of this child’s obstacles? I slapped my face (Sounds weird now, but quite fitting then, especially if you enjoy talking to yourself as I do.) and I said out loud, “You are definitely doing this!” Other Team Hoyt runners and their precious cargo came by, and by the time it was my turn to walk, I had decided that I was walking the course for them.

I took the first step of my race with those kids on my mind and in my heart. To help me along the miles, I had my wonderful teammates’ encouragement and cheerleaders from local schools telling me, “You’re doing great! Keep going!” (They cheered for everyone of course, but I took it personally!) There were people handing out cups of water and Gatorade and there were sprinklers for cooling off. Bands played in almost every section we walked through and when the road fell silent, there was a dedicated man ringing a cowbell and shouting his encouragement. Every mile marker I passed made it all the more important to finish, as I kept those little racers in mind. With my teammates I managed to complete the 5.2 miles, crossing the finish line on the Virginia Beach boardwalk in the full sun with the thermometer reading a toasty 86 degrees. And that is exactly how I earned my tan.