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.

A Bundle of Joy!

By this time tomorrow, a new little bundle of joy will have joined our family. She is my second granddaughter and her name is Kenzi Hope. Even her name evokes a feeling that something good is happening, or about to happen!  So it is–I’ll rest now and tomorrow be greeted with the thought that she’s ready to make her entrance. May it be a grand entrance, little Kenzi, without problems or worries. And may this world be nothing but wonderful to you!

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.

Eureka!

I’ve found it. Finally discovered the reason I feel so downtrodden and disheartened lately. It’s because….I have MS and that’s the way we all feel? No. Because no matter what I do, I cant feel as good as I think I should? Well, sort of. Because I reach the end of what I can do, or I arrive at the reaches of how far I can push myself and it’s still not enough? Getting closer, but the absolute reason why I feel so disgruntled is that I just want life to be perfect. That’s it, pure and simple.

Nothing like a unattainable goal! I’ve got to get out my sign and hang it up again:
SNAP OUT OF IT!

Extending a hand

One of my daughters thought the two of us could spend time together helping at a local Refugee Center,  but on our first scheduled workday she was 1000 miles away in Florida, so I had to go alone.  I wasn’t familiar with the center’s location and I didn’t know anything about the group or anyone in it, but I needed to follow through with our commitment.  Besides, I need to practice adventures of all kinds on my own.  I’m getting too used to my comfort zone and that is the antithesis of who I am!  Or of who I used to be anyway.  Now, my MS has a way of becoming a roomy shelter for “I can’t”.   “I can’t” cross that busy street alone (vertigo, falling, disorientation…), “I can’t” help because my vision is double today, “I can’t” go there because it’s too crowded, or dark, or different, or hot, or confusing.

This time, I didn’t take shelter in my MS and I agreed to help teach sewing lessons to refugees with the group Women Transcending Boundaries.  On my first day, parking was a nightmare, but I found a spot in a tiny lot in an area known for its roughness.   After figuring out how to get buzzed into the building (because the doors obviously needed to be locked during the day) and climbing a steep set of stairs, I met a few of the friendly women who were regular volunteers. This was going to be fun!  Then the security guard came in to tell me that I was parked illegally. Down I went to search for another precious parking place—I drove around and around, walked back braving high winds and a chilly 15F, climbed those steep stairs again and hoped my asthma would not be triggered by the whole ordeal.  (Yes, I am so out of shape.)

The students trickled in for the first half hour of class time, because they said that with non-Americans it’s common that a class starting time is thought of as a suggestion. Then the vocabulary lesson was given by an animated retired French teacher. The ten or so students were mainly from Burma, Bhutan and the Congo and most don’t speak a smidge of English–and I mean a smidge–so the lesson was quite an experience.  The students listened and repeated the words and scribbled in their native hand, trying to copy the English words for needle, thread, scissors and the like.  After that, we turned on the machines and started ‘driving’ lessons—sewing on paper–following the printed lines to get a feel for the rhythm of the machine.  I helped a woman from Burma who seemed to be quite familiar with the art of sewing. Her lines were stitched accurately and when she finished with her last sheet, I said, “Very good! You get an A! A plus!!” and repeated it for emphasis (probably quite loudly since I’m not exactly quiet…) I was met with a confused look, no smile whatsoever.  Shortly after that she showed me some papers from her backpack and I realized her name was “Aye”. That explained the confusion!

My other student was a man from Bhutan. There had never been a man in any of the classes or meetings before (because it’s a women’s group) and his presence irritated one of the regular helpers.  But he was an enthusiastic vocabulary student and because he kept his head down at the right times, he stayed for the whole lesson.  When we switched to sewing with thread, he kept racing the machine and tangling up bobbin after bobbin, but even that did not deter him one bit. I was smitten by his determination and his fabulous ability to think himself invisible when his nemesis came near.

Over the weeks that I showed up to help, I climbed snowbanks, fell off snowbanks, got a parking ticket, got slashed by sleet, slipped on ice, and got soaked feet from slush puddles,  but compared to the hardships of the refugee world, what was that? Nothing. Absolutely nothing.

*Almost a year has passed since I’ve helped with this group. I was cleaning out my draft file and thought I’d post it anyway.