O~R~A~N~G~E, O~R~A~N~G~E, O~R~A~N~G~E GOOOOO ORANGE!!!!!

I never was a cheerleader, not really my personality, but in this case I will cheer as long and hard as I need to.  As it happens I really do like orange, and not just the fruit, in fact it is one of my favorite colors.  I have many orange clothes and I own two pair of orange eyeglasses.  So, as you can guess, I was very happy when I realized that the National Multiple Sclerosis Society was starting a campaign to associate their organization with the color orange.  Color and logo recognition are both very strong branding tactics that both for-profit and non-profits have used to great success.  One just has to look at the Susan G. Komen foundation to see an excellent example of how well this strategy can work.

This year the NMSS starting handing out orange shirts to all event participants who raised a minimum amount of money and asking the participants to do what they could to “Paint the Town Orange”.  Many participants took this as a challenge and everything from the orange shirts, pins, headbands, beads, bracelets, earrings, orange hair spray, to even completely dyed bright orange hair was seen.  It was such a wonderful and inspiring start to this new awareness campaign.  Move over Pink, Orange is on the scene!

Look around and see what you can do on a daily basis to help get MS the awareness and recognition it deserves.  See what you have around you that you could use to start getting people to ask questions, and please don’t be afraid or embarrassed to answer those questions! You have nothing to be ashamed of and until the general public is aware of what MS stands for and what Multiple Sclerosis is, we will always be fighting an uphill battle.

I am leaving you now with a ribbon of hope and in recognition of this new campaign from now all my posts will be in orange.  I hope you like the color as much as I do!!!

Next Steps; what a ride, oops walk, it’s been!

I don’t remember the day that I started team Next Steps but I sure do remember the day it came to its culmination, April 24th 2010. Now let’s not get ahead our selves though. There’s a lot to tell about the few months between those two dates.

Next Steps was initially just my husband, friend Kim, and I.  It was my heart child born of many years of knowing that I should be participating in events such as these, but turning my back out of ignorance, fear, and the discomfort I felt in asking people for money.  Looking at my children and thinking of their future  was enough for me to overcome these emotions and Next Steps, the child of my heart, was born.

We had a name, three members, and not a clue in the world where to go from there.  We set our fund-raising goals at the lowest possible except, being the captain, I took a leap of faith and upped mine to $500.  I’ve never fund raised before and I think had it not been for this new contraption which we call the internet I might not have been able to do it this time. Not many of my ex-coworkers, Ed’s coworkers, or our friends really knew much, if anything at all, about my diagnosis and current situation, so I sat down and wrote a letter.  I sent it out to all the people I knew whose email address I had handy and Ed did the same.

Then a miracle began to happen.  Within 5 minutes of sending out that letter I had at least $100 in donations, within 20 minutes  we had at least $300 in donations and that very first night I increased my goal for the first of many times.  Over the next few days the donations kept coming in, however I was also getting letters of sympathy, disbelief, others telling of a similar struggle, and some just simply thanking me for sharing.  It was an outpouring of money, support as people joined our team, and love that just a few days earlier I never would’ve even thought to dream of.

As the weeks went on, we were able to contact more people, and the money continued to come in, I was asked to be the Columbia Walk Ambassador.  I began to believe in the power team Next Steps could have, and I started to feel a bit like my old self for the first time in quite a while.  Our friends had so generously given, and continued to give, but I felt that it was now time to help ourselves a little by arranging some fund-raisers.  We had two fundraisers at Cheeburger Cheeburger, were the recipients of National Cheese Fondue Day (yes it really exists), held a two-day yard sale resulting in sales of over $2100, and an all-day fundraiser at Looney’s Pub, and to finish up a dinner fund-raiser at The Hazelwood Inn.   By the day of the walk, we were the highest earning team, and even though I had continued to raise my goal up to $6,000 with the team goal of $8,000 I had raised over $7000 and our team was over $12,000.  What a feat and a thrill!

This didn’t happen by itself, and it wasn’t done by me alone. In fact, it didn’t come so easily at all points along the way.We had a lot of help from many friends throughout the process, many who even gave up several days to us.  We had our life taken over for approx. two months by a yard sale that lasted for two days and ended up with me collapsing in exhaustion the minute Ed walked through the door from work the next day.  Every fund-raiser caused anxiety as we juggled the kids’ schedules and waited to see what the turnout would be.    There were slow periods when I wondered if we would meet our goal, days my legs felt weak which made me doubt whether I would even be able to participate, and as I was tottering on such an emotional tightrope  I would often find myself tumbling into the depression side of the gulf.  If things didn’t go perfectly, I would often look at myself as a failure, a problem I’ve dealt with for a large portion of my life.

The day of the walk was amazing!  It was full of energy and people wanting to help find a solution to the problem of MS, not to mention all the hair colored orange.  I gave a speech as the Walk Ambassador, and got to see my friends out in full support of both me and such a great cause .  I finished the walk and as a friend commented, was even able to talk the whole way.  The greatest victory of the day however, besides the incredible amount of funds and support raised for the fight against MS, was the moment my Mom finished the course, came up to me, gave me a huge hug with a big smile on her face and yelled “I did it!”

After all the ups and downs, would I do it again?  YES!  In fact we are still raising funds up to the May 31st deadline and then will just continue until the next May 31st. deadline.  Hopefully along the way our team will continue to grow and in love, support, and money raised.

Thank you so much to all of you out there who helped and supported us this year.  Team Next Steps now has its own page on Facebook.  Please feel free to stop by and leave a message or join to be kept up to date of our latest news and happenings!

The only thing I could ask for now, which would be another miracle, would be me somehow raising (my personal fund-raising page) $2191.19 by May 31st, 2010 so I could attend a meeting in Chicago of the top fund-raisers across the country to learn from them and pass that knowledge on to our members and total goal for next year.  We’ve already been granted one miracle though and I don’t want to be greedy.

Pulse steroids, out to California, and back to depression

After little E.’s birth, my neurologist thought that I was at especially high risk for having a relapse in the first six months post delivery.  He thought that I needed to begin treatment as soon after delivery as possible.  However, I wanted to breastfeed little E. as I had done with G.  Avonex, which is the drug I had been using pre-pregnancies, is not considered safe while breastfeeding.  The neurologist decided that pulse steroids would be an acceptable substitute until I was done breastfeeding.  So we compromised with me getting one round of high dose Solumedrol once a month while little E. was given formula for approximately 28 hrs, and I would pump and dump during those hours to keep up my supply.  I had no relapses during that period.  In fact I didn’t have many complaints at all, except for the home care nurses and their generally poor IV skills.

When E. was seven months old, we decided to got to California for almost two months at part of a summer program for Ed’s job.  I spent many hours on the internet trying to find us a vacation rental which would be within our housing allowance, yet had us within in walking distance of the beach.   It wasn’t easy, but I finally found a place.  I was so excited!  It was within two blocks of the beach and a mile from the center of town.  What more could I ask?

We packed everything up, flew to California, the kids were almost perfect by the way, and then there we were in San Diego.  After fighting with car seats for an hour, we drove the twenty minutes to La Jolla, to our temporary home.  La Jolla is a beautiful town with amazing oceans and beaches.  What a summer we were going to have!

The problem with paradise, however, quickly roared it’s ugly head.   Most of the beaches, including every one within walking distance, had steep steps down to from the road, and then rocks that you had to navigate before you got to the sand.   The real issue with this was that I had not fully recovered the strength and balance in my legs, making it impossible for me to take the kids to the beach without help.  My fantasies of walking to the beach each day with the kids were suddenly substituted with the reality of many days stuck inside the apartment with the kids watching way to much T.V.

I joined a mom’s group while I was there, and Ed was nice enough to take the bus to work occasionally so I could have the car and get the kids out of the apartment.  We went to the Zoo, rode a train, got to a few playgrounds, but waited for Ed to even attempt the beach.

After about three weeks there, I started to feel a distinct difference in the amount of trouble I had walking.  I called my neurologist in Maryland, and it tuned out that he was not able to prescribe IV Solumedrol in CA because he did not have a California medical license.  However, after much back and forth with his nurse and a local pharmacist, they were able to figure out a pill dose of solumedrol which he was able to call in.  In the neurologist’s opinion, the symptoms I had were not that severe, so he started me out on a low dose.  It very quickly became apparent that the lower dose was not effective, so we upped the dose, and I stopped breastfeeding E. for good.

It was a scary time because we were in a second story apt., and I was often responsible for getting both children up and down the stairs.  I could barely get my self up and down the stairs.  Luckily, I never fell, and only came close to falling once.  This whole situation sent me into a depression where I found it very hard to motivate myself to get off the couch and do anything.  The kids got introduced to a few PBS kids shows and a lot of the Food Network.

In the last two weeks that we were there, my legs finally began to feel better, and I chanced the stairs and rocks to get down to the beach.  Talk about beautiful.  I felt at such peace there.   For our last week there, we went every night and watched the sun set over the ocean.  Then it was time to leave.  We had gotten to see the zoo, go to Hollywood, visit a few wineries, make two trips to Sea World, and  a few other things, but not with the excitement and enjoyment that I had pictured when we arrived.

When we got back home, I just slipped into an even worse depression.  I could care less about cooking and dinner, which had once been my passion.  I had no real desire to go anywhere, and spent most of my days on the couch spending way to much money shopping for Christmas gifts for my kids.  This is the only thing that made me happy because I wanted them to be happy.  I’ve started anti-depressants again, though we have been through a few different ones and changed the doses a couple of times, and I’m still not sure we’ve got it right.  There are definitely good days and bad days.

Sometime after the first of the year, I decided I was going to start a toy and book blog.  I was actually excited about something for the first time in a while.  I also decided on the spur of the moment one day to sign up for an Instructor’s Course which would allow me to become involved in my previous field again through teaching.  I also found this prospect exciting.  The toy and book blog had barely been named when I decided to create a team to participate in MS Walk:Columbia 2010, that prompted me to start writing this blog.  Since then, this blog and fund raising has taken all of my time.  I hope to get back to the toy and book blog when the MS Walk is operating on its own or is over.  My Instructor class started last Monday, and I came home almost in tears realizing how much I had taken on in such a short time and how much work was involved.  I think a lot of that feeling was brought on because I’d been having days where I felt that my legs were weak and shaky, and I was becoming scared about that, along with my perpetual guilt about not interacting with my babies enough because I always feel so tired.  We won’t even get into what’s been going on with my parents’ move. I’m sure things will work out.  I am smart and determined and have a very supportive husband.  I just need to allocate my time a little better, and maybe adjust what I am doing to help myself sleep a little bit.  I just need a little more energy, and hopefully a change in sleep patterns will allow me that, and to figure out how to allocate my spoons a little better.  I’ll keep you all updated.

Well folks, this is the end of my story about the past.  All future posts will be discussing the present or my hopes, goals, or fears for the future.  Thank you for your interest in my story.

Cheeburger Cheeburger!!

Yesterday was team Next Steps first official fundraiser.  It was held at Cheeburger Cheeburger in Columbia, Maryland.  What a wonderful evening!  I got to see many people I hadn’t seen in awhile and meet many new people who had come out to support the fight against MS.  It was a very moving evening for me.   We managed to raise $217.31 for MS! It was so successful that we are going to do it again at a different Cheeburger Cheeburger location before the walk.  If anybody that was there last night is reading this, Thank you VERY much!!!!

A brief break from the past for some news from the present

Over the last couple of days, while writing this blog and doing some research on other blogs related to MS, I have been blessed to come across many beautiful and inspirational blogs and to talk to a couple of the people behind them.  I have contacted a few of my fellow blog writers to ask them if they would be willing to help a new blogger out and link my blog on their site.  I, of course, would do the same with their blog.  I know that it is early yet, but I had one, almost immediate, response from Nadja of LIVING! WITH MS .  Nadja not only linked my blog to her site, but she also did a special blog post to introduce me to her readers.  I am very grateful.  Please go on over and check out her blog!

In other news, I have an appointment with a new neurologist on Wednesday.  I’m a little nervous.  My last neurologist left  Johns Hopkins to go to an institution, to do some more extensive MS research.  Though it was sometimes difficult to get an appointment with him, he made himself available by email, and he also gave us his personal cell phone number for when issues arose.  He would call in prescriptions and arrange steroid treatments without me having to go into the office or a hospital.  However, he was strictly medical.  He offered no lifestyle advice or any information on vitamins/herbs which have possibly proven helpful to a person with MS.

I need to be able to connect with a doctor for him to be able to help me at all.  I do not like “feel good” doctors who only tell you what they think you want to hear, but I do like some discussion and a doctor who explains why rather than just stating the facts.

I’m also a little scared that the classification/subtype of my MS will be changed from relapsing remitting to secondary progressive.  After each of my last two relapses, I have retained some altered sensation in my fingers and weakness in my legs.  This has never happened to me before. In the past, I have always completely returned to baseline.  I am not sure if the weakness in my legs is secondary to the MS or to the simple fact that I have not done any type of exercise since before E. was born.  Hopefully the neurologist will be able to tell.

To add a little humor to this, at least for those of you of you who have been living through or following Maryland weather this last week, MS has at least given me a get out shoveling snow free card for our record setting snowfall!  You have to look at the bright side of things or you could spend your life crying.

This appointment is set up as a returning patient (rather than new patient), since they are treating the situation as if he is just taking over for my previous neurologist.  I just pray he has the time and patience for all my questions about the new studies and treatments being discussed, and to allow me to get to know him.  I could use all the prayers, thoughts, and crossed fingers you have to spare.

I would  like to thank everyone who has signed up to walk with Next Steps and all who have supported us in any way.  At this point the Next Steps team has raised $1,975, thanks to very generous friends, family, and the occasional stranger, and we still have almost two and a half months till the walk.  Hopefully this $1,975 will be completely eclipsed by our total amount on April 24th.  Right now we have a fundraising event planned for March 2, 2010 at Cheeburger Cheeburger in Columbia, MD from 5pm til 9pm.  If you are in the area, go to the Cheeburger Cheeburger page on the right side of this page and print out the flyer to bring with you, or just stop in and say that you are there to support the Next Steps team.  The restaurant has agreed to donate 20% of the total receipts to support our team.   That’s quite a deal!  More fundraising events are in the works so please stayed tuned.

Next post…back to the past.

My story in brief – more on the past, present, and future to come

Last year I walked in an MS walk for the first time and SHAME on me. Shame on me because I was diagnosed with MS approximately ten years ago now and this was the first time I ever done anything active about it. I would give a little bit of money through the United Way but I never did anything else. I often thought about doing something but there was always a reason not to.  Something else was going on; it was too much effort to put together a team; I didn’t want to bother my friends; I hate fund raising; I forgot; and any one of a long list of other mundane excuses.  The biggest reason, however, was that, inside, I was really scared.

When I was diagnosed, I was told by the neurologist that the type of MS I had at that time was relapsing remitting. That meant that I would have attacks, but I would recover fully between each attack. Since I had only shown sensory symptoms so far, and no motor involvement, I would likely continue this way.  And for a long while I did.  I had periods of numbness here or there, maybe some altered temperature sensation, but nothing that I considered more than a mere nuisance. I continued to work at my job as a paramedic without my coworkers being any the wiser. The worst thing that MS did to me until that point was almost keep me from adopting my
beautiful daughter, Ksenia, because of a Russian law which stated that people with certain types of MS were not allowed to adopt from their country.  Luckily, it turned out that I hadn’t been diagnosed with one of those forms.

After this brief scare that MS might actually have a real effect on me, I just went on with my life as normal. Deep inside, though, I always knew that there was a chance that it could all change in a minute and I just didn’t want to think about it. Hence, my previous lack of involvement with anything related to raising money or awareness for MS.  If I became involved I would have to interact with people who hadn’t been as lucky as I had and watch them deal with MS-related challenges and disabilities that I pushed from consciousness and always hoped to avoid. I was afraid that it would be like seeing into my future and, as I said earlier, I was scared.

Well, in the Spring of 2008, everything changed. I finished a shift at work, planning to return to duty in a week and a half. Little did I know that would be the last time I’d ever ride a paramedic unit.

I was off for a week’s vacation in Ocean City with my husband, Ed, and our two kids, Ksenia and Gabriel. The second day, I felt like I had to pull myself up the stairs in the condo.  I could tell that I was having trouble walking, though it took others a little longer to notice. My right leg became so weak and slow to respond that I no longer trusted myself to drive.  It finally got to the point that we went to the local emergency room.

That evening was the beginning of the hardest period of my life to date.  Of course it was assumed that the MS was causing the symptoms and with proper treatment they would go away as they had in the past.  That night, however, we also found out that I was pregnant with our precious little girl, Eliza.  So now instead of receiving the typical treatment, I was told that I could not be treated at all because of the pregnancy.  I deteriorated quickly.

I went from having difficulty holding my nine-month-old, to the inability to feed him due lack of arm strength and endurance.  I went from having trouble walking, to basically being an invalid, stuck on the couch, if there was no one there to help me. I needed someone to help pull me up off the couch and I didn’t even have the strength in my legs to lift my feet over the dividers on the floors between rooms. The only extremity I still had a fair amount of use of was my left arm. My mom drove a two-hour roundtrip every weekday for many months to take care of my son for me while I laid on the couch and couldn’t even hold him because I was afraid that my arm would give out at any time. One thing that still breaks my heart about that period is that I was unable to assist my daughter, Ksenia, is the search for her high school graduation dress.

I was lucky that early in my pregnancy I met with a specialist who convinced my neurologist that I could be treated.  After two rounds of treatment and one hospital stay I began to slowly improve with multiple setbacks along the way.  Eventually, we had a happy, healthy, baby girl, and I regained about 90% of my functionality. However, without 100% recovery, I could no longer perform my job as a paramedic. So, after fifteen years, at a job I loved, I was forced to retire on medical disability.

This is a road that is far from ending. While in California this summer, I relapsed. Though thankfully not nearly as severely as the earlier attack.  As I sit here and write this and watch my son twirl in circles, I still consider myself one of the lucky ones.  Now, however, I know that as one of the lucky ones I must do something to help with the fight to cure MS. My hope is to help secure a happy and positive future for myself, my family, and all of the others affected by this horrible disease.  My little ones need their mother and I would love to continue to be an active participant in my children’s lives.

Many strides have been made in MS research lately, including the release of a new drug for the treatment of leg weakness and many other hopeful experimental therapies not yet available to the general public. Without support and money from people like you and me, none of this would be possible. Because of our support the future holds much more hope for me, my family, and many other families like us.

I have started a team called Next Steps to walk in the Columbia 2010 5k MS Walk.  I am asking, hoping, and praying that you can find some way to become involved. You can join our team as a walker and sponsor, as just a walker, as just a sponsor, or as a volunteer at the event. Please go Next Steps’ site at Walk MS:2010 or to my personal page to sign up to do whatever you can to help.  Additionally if you have any friends, co-workers, fellow church members, corporate leaders, etc. who you think might like to join or support us, please pass this on to them.  We can use all the help we can get!!!

I would like to thank you ahead of time for any help you are able to give. Anyone who is available after the walk is invited to our house for a celebration of the impact we have made!

Sincerely, and with heartfelt thanks,

Debbie