Category Archives: Blogroll

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Happy Birthday (Anniversary) To Me

So here it is. Saturday, June 21st of 2008 I’m celebrating my 40th birthday and the 20th anniversary of my diagnosis. Being diagnosed with Multiple Sclerosis on your 20th birthday might seem like a cruel joke to some, but for me it was the beginning of my life challenge. What seemed to be an insurmountable prognosis became a series of tests that I passed with flying colors.

Don’t get me wrong… It would be an understatement to note that a lot of this ride has been very difficult. I’ve certainly spent time crying, shaking and cursing the universe that assigned me this lot in life. Wondering in fear what is next and how will it change my everyday. The “what ifs” and “will I be able to handle it ” question marks clogged my already crowded neurons. That ride started out like a rollercoaster with no end in sight. The loch ness monster at bush gardens in virginia is the best parallel. I was too scared to go on it as a 10 year old but I’ve been riding it every since my 20th birthday. This time I was taller than the hand on that little animal painting and had no excuses for not joining the group of apprehensive riders.

Apparently the same universe that I cursed, thought I could handle it… even 20 years ago at this very low period in my life. Apparently it (the universe) was correct. “That which does not kill you makes you stronger” is an apt theme for what turned out to be a scary course with MS. The people I meet who have had this diagnosis for more than a couple of years mirror that posture. It’s the once unwilling boxer now shouting “Is that all you’ve got?” “Bring it on!” I’ll show you what I can handle. It may have taken me years to find this fighter in me… but its with me now. When I think I won’t be able to cope with the symptom de jour… I look back at what I rose to the challenge of, and feel emboldened. (I think I may have left out 1 metaphor…should I go on?! 🙂 )

In 1988 I was just starting out on my life, independently from my family. New to Baltimore I sought out friendships, dated and learned who I am as a filmmaker in a pre-digital, pre-internet world. I also needed to learn who I was (am, will be) as a person with Multiple Sclerosis. Yet I didn’t yet know who I was without MS. The spectrum of “what might be” seemed vast at 20 years old. I feared everything. Would I be able to complete my degree? Would I ever meet anyone who could love me with this disease? At a time when I was unsure of who I am in this world, I had to cope with unsureness of my being at the most pure level.

Discovering myself as a person with an organic disease that is completely unique is very tricky. When I reflect back on that time I wonder how I got through it. Because I was simultaneously coping with my parent’s divorce and my mom moving to Florida, I was alone in the process. But like many things in life, time is the great adjuster.

Time heals all wounds… except of course if they are scars. In retrospect the wounds of coping made me a stronger individual. I feel that who I am today has been shaped by my ability to cope with unexpected changes. As I leaf through the pages of the history that is mine with MS, I continually make that positive Hmm sound. You know the one.. with the little lift on the the last “m”. Almost questioning. As the years progress and I continued to reflect I realized that I can deal with far more than I ever imagined I could. The initial fears that came up while reading the list of possibilities in 1988 played themselves out very differently.

But the THE UNKNOWN loomed large over my college graduation. As I sit here 20 years later, a mother, a wife and a person who owns this version of MS – the next 20 years still hold a lot of question marks. But looking back and looking forward I can say that whatever is in store for me, I can handle. The list of possibilities that fuel(ed) my fears is now like a crossed off grocery list halfway through the store. I’m not sure what that will mean, and I still shudder to think of what I may or may not have to add to my column of coping. But I do know this, my power to persevere has served me well and when it comes down to it, living this life of challenges is always better than the alternative. And conveniently the world of medicine and pharmaceuticals is working hard every day on my (and my peers) behalf to make sure that the second half is easier than the first. How great is that?

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Sum Sum Summertime

The hot summer months are usually coveted. For most people they offer vacations, trips to the beach, lots of fun in the sun. For many other people the sun is a part time enemy. When you have MS the sun is the source of heat that swells the neurons… making for more challenged message conducting. (ie. exaggerated symptoms and flare ups) But it also is the natural source of Vitamin D, that individuals with MS lack. I’ve learned to enjoy 10 minutes of direct sunshine as a daily dose. After that I usually run for the air conditioning to cool off. It’s no wonder that I’m feeling less than adequate as the summer approaches. Feeling like my ability to play and be a part of things is more compromised… I try to combat that emotion and take it on as a challenge.

I just have to be more creative. There is always a solution that will satisfy my family and the MS in me.

For now, I’m thinking it over as I sit in our backyard watching my daughter play in the pool (the ones that “inflate” as they fill-up with the water).. doing her made up strokes. “Hey mommy, do you want to see the dolphin ?” She proceeds to “dive” in and is on to her next move.

Maybe I don’t need to think so much… maybe it will just happen.

Maybe it is happening.

~more later

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Dizziness Reduction and Alternative Reporting

So here I am, a month after starting the MS Detox Diet… or my version of it. And my dizziness that began way back when in December is subsiding. It happened so gradually I practically didn’t notice it. In fact the change was so subtle at first that I couldn’t determine what felt different. Just that something good happened. And the sensation is still present when I move certain ways- reminding me not to get overly confident. I’ll turn my head as I’m walking away and everything shifts. But for the most part it’s taken a break. It’s off center stage and blending in to the scenery. No longer does the world as I perceive it change when I go from a seated position to a standing one. Such a smooth and gradual transition… that it wouldn’t be difficult to forget. But now, when people have the courage to ask me how I’m doing… I excitedly report something other than status quo. And I remind myself to not get overly confident as I tell them that is crops up periodically. Don’t get used to this … because it can change back in a second. Since my “recovery” I have reverted more than once. As Dr. Verter, who has been treating me more regularly said, “don’t expect that this will be anything but a minor setback”. And he was right. And so it is. But I will keep my fingers crossed in an “un-superstitious” way. Hoping, praying? To the higher power that exists in this universe that this will be all but a distant memory to recap in a “what was” report of my Multiple Sclerosis.

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MS SoftServe – The word

So the documents are off to the IRS and although this means that I will be entering in to a new sphere of red-tape… I’m excited. Each small step brings me closer to the larger goal and that is very satisfying. Maybe the hurdles jumped and goals achieved are what is to be on the landscape of SoftServe Matters- the engine behind MS SoftServe. There will be web development and grant applications. There will be involvement from those who want to put their mark on SoftServe and ultimately more sites will be generated for more illnesses. Helping more people who struggle with information overload but want to learn.

And then there were faux pas.

So with the new video up on mssoftserve and youtube I thought I would reach out to the people on patientslikeme.com. It’s a site that I had set up my profile– which includes all of the details of my history with MS, the treatments and otherwise personal information that seems natural to share here. I would review the chats, being careful to steer clear of information that elicits anxiety. Sometimes I would make a comment, but mostly I would just read and listen to what people are saying. Hoping to add to my understanding of this diverse group of people that I am a part of.

So I set up a forum to inquire how people on plm prefer to get information about their MS. I explained what I’m doing and invited people to check it out and let me know what their experience learning on the internet is.

Imagine my surprise when I got this as a response:

“Please explain the reason for this post. I have looked at both sites and it is really confusing. I think the hmmmmmm is now what are you selling.”

“…..selling or smelling a rat?”

Ouch! Okay with further explanation the person retracted the “rat” comment… but that sure did hurt to read. I guess in these times one can’t help but to be wary of these types of things. I was in a bummer of a mood looking for a pick up when I signed back on the site. Hoping to see supportive comments and instead finding the contrary. It was unfortunate timing.

But it also was an opportunity to learn a lesson.. which I definitely have. In some ways it is like a code of honor. If you aren’t an active part of this group then it isn’t appropriate to speak to this group. Just being registered isn’t enough. The fact that I hadn’t yet posted much to the site was a red flag to the involved members that I am not one of their neighbors, and they have no reason to trust me. I get it. Now I’m chatting more, and blogging less. Hopefully it will balance out.

~

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Some images of the Copaxone syringe and collar.

This little plastic item makes giving an injection a whole lot easier. I’ve never used an autoinject as I started this medication in 1993 and they didn’t yet exist for Copaxone. (then Cop I) Since these syringes were released with the tiny little finger supports this collar makes a huge difference in getting more control of the injection process. I got mine at the Shared Solutions site for free, although when I went back there to see if they are still offered I couldn’t find them. I have a few extras if anyone needs one. Drop me a note and let me know. If you aren’t doing an autoinject these collars make a big difference.

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MS SoftServe, off and running!

Yippee! A triumph over the endless digital dilemmas, web master Bonita has figured it out (as always) and the video that describes the staging ground of MS SoftServe is up on the site! www.mssoftserve.com It’s also on youtube in an abbreviated way. I hope this video will help to explain why MS SoftServe is needed, and how we can make it a reality.

So now I switch gears to copy writer and layout artist (with the support of familial experts ) to create a brochure to spread the word about MS SoftServe to potential sponsors. Awaiting the delivery of the legal documents to register with IRS and get my 501c3 number. Then the fundraising aspects of the site will be functional.

For all of you out there who have expressed support in making this site a reality, I’m assembling a list that I will use as evidence of need when I approach sponsors. This will also serve as a mailing list for important announcements. While your writing… take an opportunity to request something that you would like to see produced on the site. The way to make the most of this site is for it to be a “For us, By us” venture. Join me in its development!

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MS SoftServe Timeline 2

Bonita is finishing up the talking head film of me describing the need for MSSS and what the staging ground is all about. She’s tested and tweaked it in all the browsers and it should be up and running within a week. (she types with optimism)

I’m starting to work on the content information to provide to Pixel Corps so that they can start working on the flash animations for the different areas of the site. They will additionally work on some 3D graphics to spruce up the word heavy areas and tweak the films so they aren’t so choppy. Maybe we can do something like the story of stuff. Anyway… thanks to the brilliant guild style organization of PixelCorps- its a beautiful symbiotic relationship.

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MS SoftServe- and so on, and so on.

When I started reporting on the status of MS SoftServe I think I had imagined something that would be more…. consistent. I don’t know… progression seemed like a reasonable expectation. Then reality happened and I’m reminded that with increasingly limited funds, a full time job, and a family its not surprising that this is moving slower than the polar ice caps are melting. (a sad metaphor, I know) Bonita, my web master, also has a fulltime job and while she has more free time, she longs to work on this fulltime. She lamented to me today that she pines for a time when she can labor over when something isn’t working for 24 instead of 16 hours. In the meantime I’m busy pushing 501c3 paperwork along so I can start researching grant applications, and I’m creating surveys, and writing proposals and sometime its hard to see the incremental movements. But they are happening. We are about to post the video that describes the need for MS SoftServe and the functioning aspects of the staging ground. On the home page of mssoftserve.com and youtube.

On a more exciting note, I met with Alex Lindsay, the chief architect of PixelCorps (The Pixel Corps is a guild for the next generation of craftsmen… digital craftsmen.) today. What an inspiring person. When I first met him in 2005/06 he was the spark that got me to “think big”. So that is what I did and thus I’m now connecting with him about how PixelCorps can develop elements of MS SoftServe. It’s all very exciting. The craftspeople at pixelcorp require production opportunities so that they can learn skills and experience the client feedback and interaction. There one requirement is that they don’t get paid. An ideal alliance if you ask me. Bring it on…

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Something has changed

It is such an unusual experience having compromised sensory symptoms. The information and tools we use to interpret the world around us are generally consistent. We know when something hurts, or feels uncomfortable. We can even explain the details of pain or discomfort with metaphors and similes. My head is pounding like a jackhammer. Even the sensory changes have common comparisons. My feet have pins and needles from sitting wrong.

I can describe my dizziness with a number system, or scenarios that people can relate to. I feel like I just stopped spinning around and around in a million circles. I’ve refined and re-tuned my descriptors as I search for a way to have a handle on this ambiguous yet debilitating symptom.

Then last night something changed. In the evening after a long day at work, I started rearranging things in the kitchen. I was suddenly overcome by a surge of energy- as was immediately evident in my housekeeping. (something I usually don’t have much drive for.) I made steamed kale with shallots and tamari and some quinoa. I unloaded the dishwasher and loaded it with the sink’s contents, I washed all of the pots that had been socializing on the stove top for the past few days, I did 3 loads of laundry including the folding and putting away. I scooped the litter and swept the floor and read 3 chapters in my book. Now this may seem like a standard evening for many working parents… but for me this was a superhero moment. I hadn’t been that productive in this short evening time-slot in a long time.

What was that all about? I’ve been detoxing for 1.5 weeks and am re-cooping from the acupuncturist with visits to my chiropractor to even things out. Maybe this has something to do with it, maybe not. All I know is that although I continue to experience dizziness — something is different. Something is really good.

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Acupuncture, a different type of needle.

Last week I went to see an acupuncturist. I had never done so, and after almost 20 years with this disease it is surprising to me that it is the case. I’m open minded, yet always felt that I would exhaust conventional medicine before going the alternative route.  As I explore the MS Recovery detox, seeing an acupuncturist seemed like a good complementary effort. As I’ve said, anything that might stabilize my world is worth a shot, or a needle!

It was quite an experience. I learned first hand, or shall I say first back, what cupping and scraping means.  If you have ever seen these ancient Chinese techniques exploited in films (Harriet the Spy) you know what I’m talking about. You know the one where glass bowls and needles are stuck all over the character’s back? Well that was me… although a bit less exploitative.

After all was said and done I had a modern art of hematoma on my back that makes Jackson Pollock look hesitant. But the truth is I felt great. Not sure about the dizziness… but great none-the-less on every other level. Apparently I have heat, and dampness and phlem as was evident in my 9 pulses. I went home with some suggested additions to my detox diet, as well as a daily vegetable juice to combat this condition. Oh, and dandelion root tea. I can embrace most of the suggestions and the juice recipe is very good. 

So I went home very optimistic that I would experience a change. As the evening wore on I was sensing something different, although I couldn’t put my finger on it. Unfortunately when I woke up the next morning everything was worse. Such that I didn’t go to work for 2 days and still felt worse over a week later. I’ve been hopeful that this much change would give way to similar recovery. (That’s the kind of optimist I am! ) When I visited with Dr. Verter, his thoughts were that she just did too much at once. (cupping, scraping, deep tissue and acupuncture) After two sessions with him.. I think I may be on a mend of sorts.  

At this point I’m just thankful that when I am seated I’m fine. It allows me to write and work and feel productive. If I didn’t have a break there… it would be in a much harder to cope. So, I will try to accept what is- and continue on with my efforts to be in the best health in the areas I actually have a say in. (ie. food and exercise)