Life with MS & EDS

November 23, 2010

My Annual Fall Fall

Filed under: Uncategorized — by mseds @ 8:47 pm
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Fall would be my favorite season, but for some reason my health declines each autumn.  From 2001 – 2008, my optic neuritis would come each fall and be gone by spring.  Starting in 2008, it stopped going away in spring, but since then I get pain behind my right eye in November.  Also, I get awful acne, apparently from my rosacea, but I’m not convinced that is the cause.  Over the past month or so, I’ve felt the benefits of my CCSVI angioplasty slip away.  My hand strength is declining and my fatigue is increasing.  It’s pretty discouraging.  I had another Doppler ultrasound to see if my jugular veins are still open, but won’t know the results for a couple of weeks as the doc is away from the office.

I can’t figure out what it is about fall that brings about a decline in my health.  What is it about this time of year that throws my body for a loop?

July 31, 2010

Angioplasty – FINALLY!

Filed under: Uncategorized — by mseds @ 11:12 am
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Persistence pays off!  Yesterday I finally had angioplasty.  I didn’t want to say anything prior to the procedure because I didn’t want to get my hopes up again just to have things canceled.  I told only a handful of people.  They asked if I was nervous and I replied that I was far more anxious about things getting canceled again than I was about the actual procedure.  I tried hard not to count chickens before the hatching of eggs.  That’s a pretty big challenge for me.

So, here’s the story.  A couple of months ago I started calling around to all of the major hospitals within driving distance.  I spent hours on the phone, usually getting the run-around.  I started out by asking for Interventional Radiology.  I’d explain why I was calling (“Hi, I’m calling because I have collapsed jugular veins and wondered if you could do angioplasty for me.”)  Usually I’d get the response, “I’ll transfer you to ___” and that would happen several times at each hospital.  The funniest pass-the-buck was at the hospital where Dr. Specialist is.  After being transferred several times, someone sai,d “You should be talking with neurology, I’ll transfer you,” at which point I said “Thank you anyway, goodbye.”  It was pretty frustrating, to say the least.

At one institution, I spoke with a really nice person who thought she could help me.  We chatted a bit and she took my name and number, saying that the person she wanted to talk with was not in.  I think I called there on a Thursday.  I didn’t hear back, so I thought it was a lost cause.  The following Tuesday the phone rang and they called to book a consultation with a nurse.  I was hoping for a doctor, but would be okay with baby steps, so I took the appointment.  On my way to the appointment, as I approached the highway, my cell phone rang.  It was the hospital calling to cancel.  However, this was a good thing in this instance.  They were calling to switch it to a consult with a doctor and he couldn’t see me that day.  So I headed home and we rescheduled for a couple weeks later.

About two weeks ago I drove a bit to meet with the doctor and the nurse.  We had a great conversation about MS, CCSVI, and the hope open veins would bring.  They were glad to help me out and do the angioplasty.  I asked if they’d need IRB approval and they didn’t think they would.  It seemed that most facilities were getting through at least a few procedures before being stopped, so I was hopeful this would work, but wasn’t 100% convinced.  We booked surgery for two weeks later.  I was hoping for sooner, based on the experience last time where waiting turned out to be the wrong choice, but I think the two week wait ended up being a good thing.  It allowed them to touch base with other doctors doing the procedure and to do some more research.

Yesterday morning finally came and I still wasn’t sure this was going to happen.  We arrived about 30 minutes early.  It was either get an early start or be stuck in traffic.  Best to get up a bit early and not be stressed about the drive! I couldn’t sleep anyway!  When I arrived, the administrative person at the front desk had obviously not yet had her morning coffee.  She was less than helpful.  I wasn’t on their “out-patient surgery list” and I didn’t have a prescription in hand (my pre-op letter didn’t mean much to her,) so I was told to take a seat until someone from Radiology arrived.  I guess it’s not every day that a 30-something year old walks in for angioplasty.  I can understand why this could be strange, but she could have at least been nice about it.  Thankfully that woman was called away to a meeting (I hope it was a customer service class!) and another woman took over.  She recognized me from when I checked in for my consult and she was extra helpful.  She realized I was a “special procedure” and got things moving along for me.  Soon enough I was checking in and signing all the waiver forms.

Soon thereafter, the nurse came around to take me to the Special Procedure room.  My husband came back with me and we got to talk with the doctor (let’s call him IR Doc II.)  He asked if I had any questions, which I did, of course.  The first thing I asked was if he wanted to remain an “undisclosed location.”  I warned him that if his name got out and he wasn’t ready, he could have a thousand people instantly on his doorstep and would be swamped.  He spoke with the doctor who had to cancel my original plans (IR Doc I) and he’s getting about a 100 calls a day even though he’s currently stopped and awaiting IRB approval for a trial where 50% of the patients will have a placebo surgery (don’t get me started on that topic.)  IR Doc II said his office is planning a meeting next month to come up with a strategy.  I also asked him about the approach.  He said he was going to do right side entry (most right handed doctors prefer to work from the right side and he could access all of the areas he needed that way — not sure that was completely the case given new research, but that’s okay for now.)  I also brought up the imagery from last time.  It showed problems with the right jugular while sitting up, but not laying down.  He said he was going to be measuring pressure along the way (the “gold standard”) rather than judging based on how things look.  When going through the risks, he of course mentioned that my veins could narrow again.  He said we may need to do this again and joked that it was kind of like an oil change.  I liked that reference.  We talked about a couple of other things and then I was off to get changed.

Once in the Special Procedure room, they warned me that it was going to feel like I was being attacked from all angles.  It did sort of feel that way.  I lay down on the table and a camera thing was above me.  Two monitor screens were also there.  There were two nurses.  One stuck those cardiac stickers on me and we had small-talk while the other nurse tried to get in the IV.  I warned them the IV would be the hardest and worst part of this whole experience.  Sure enough, he couldn’t make it work on the left side, so he switched to the right.  Thankfully he found a great candidate and was able to get it in on the first try.  They put a blood pressure cuff around my left calf which was set to go off every 5 minutes.  They also had to shave a bit in the area where the catheter would enter.  That was about it for prep work.

I had the option of IV sedation or no sedation.  I wanted enough to relieve anxiety.  Unfortunately I think I got too much because I was way more relaxed than I expected.  I think I slept through a lot of the procedure!

There seemed to be a lot of people in the room, but I couldn’t turn my head enough to see who was there.  I know the two nurses were there along with the IR Doc II and his assistant, but I’m not sure who else.  They gave me local anesthesia at the insertion point and I didn’t feel much after that.  They place in something (sorry, I forget what it’s called) that they use to thread everything through.  I couldn’t exactly follow what they were saying, but I’m pretty sure they were swapping out different catheters and/or different size balloons.  I know they did the right vein first.  That seemed to go well.  I can’t explain how it felt because I was pretty out of it.  I’m pretty sure I napped quite a bit.  I woke up more on the left side.  They had trouble getting into the left jugular.  They had to stop and do a doppler ultrasound to see what was in the way.  Apparently a valve or something was blocking the path.  He said to take a deep breath and bear down.  Thankfully he was able to get through.  I asked to make sure they checked the azygos, which he said he’d do next.  I think I dozed off after that again.  When I opened my eyes again, the assistant and nurse were there.  The assistant held pressure on the insertion site for about 15 min (I think) and then it was time to take me off to recovery.  It was around 11:45 by then.  I asked what I missed while I was napping.  They had to balloon both jugulars, but not the azygos.  (Based on things I’ve been reading, I have a feeling I’ll be back to have the azygos done in the future.)

I was extremely bored in recovery.  I’m used to post-op being an area where pain management is done, but that wasn’t needed after angioplasty.  As with other procedures and surgeries, I was freezing cold.  They gave me more warm blankets and I started feeling better.  Hospitals are always freezing cold and I think the IV sedation makes me feel even colder.  I had to lie flat, which was fine.  I asked if my husband could come back, but they said there wasn’t space.  They did eventually track him down (another hospital administrative personnel problem that I’ll let him elaborate on if he wants) and brought me by book.  Can I tell you how hard it is to hold up a 600 page paperback while flat with your non-dominant hand?  That didn’t go well.  I gave up and started talking with the nurses there.  They were excited to have an MS patient getting treated for CCSVI.  Some of them knew others who have MS.  I explained CCSVI and some of them wrote down notes to look up more info and pass the word along to others.  That was neat.

An hour finally passed and I was moved next door where my husband could finally join me.  I had to lie still for another 2 hours, but they did slightly incline my head so that I could sip on juice.  Eating a sandwich while almost flat was interesting.  The best part was that I could finally get to my smart-phone and email out a short update.  Unfortunately a blog post from that position on a small device wasn’t going to happen! They continued to monitor my blood pressure, pulse-ox, and insertion site.  I found it very encouraging that my pulse-ox was 96!  It had been 92 at my appointment with IR Doc I.

Once the IV was out (why is it that the thing I hate most about hospitals is the thing you have to deal with from the moment they start until the moment they do discharge?!), I felt great.  My left jugular area was sore and my body was stiff from lack of movement, but otherwise I was fine.  I think my husband was more tired than me, but he didn’t have a series of mini naps all morning.  The nurses helped me get dressed (hospital policy, I think.)  I was given a head’s up to wear underwear that wouldn’t have a seam at the insertion point, so that was a great tip.  Wearing exercise shorts was also a smart choice.  My husband went down to get the car and a nurse wheeled me out.  I was sent home with just a band-aid on my upper leg and tape/gauze across the IV spot.  I was told no driving for 24 hours, to take it easy the next day, to stay hydrated, and to monitor the insertion point.  So far, so good!

I slept great and woke up feeling refreshed.  My left jugular is still sore, but better than yesterday.  Other than the fatigue being gone (so far) and feeling like I actually have oxygen flowing through my body again, I can’t report any other changes.  I was really hoping that the optic neuritis in my right eye would improve, but no such luck.  I think there’s too much damage to the optic nerve.  Some of the weird twitches and tingles I used to get seem to be gone.  Before surgery, whenever I’d yawn (which was pretty often), I’d get a weird twitching in the area of my right tricep.  That hasn’t happened since the waiting room before surgery!

I’m taking it easy today, but plan to test out the new me tomorrow!  I’ll keep you all posted.  Thanks, everyone, for all of your thoughts and prayers!!!  It’s wonderful to have normal blood flow!!

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

November 4, 2009

Good-Bye Trial, Hello Rebif?

Last week I saw Dr. Specialist. Our discussion started out with, “I don’t think it’s a good idea for you to go without treatment for three months,” which is what I’d have to do to be part of the trial. I responded with, “So, I guess you have the MRI results,” which she did. It was a mixed picture.

The good news is that my upper spine is looking better, for the most part. The lesions in the cervical spine demonstrated either a “mild decrease in expansion” or were stable. Some decreased in “conspicuity” however one was more “conspicuous” than before (meaning they can see the lesion more clearly now.)

Moving further down the spine, the news got worse. Multiple lesions are stable in the thoracic spine, but there is new enhancement and extension of the lesions at T9-10.

The theory is that Copaxone isn’t working. Dr. Generalist would say that it’s too soon to know this, but I’m siding with Dr. Specialist on this one. I’ve been on the Copaxone since early February and seeing a new lesion and increased enhancement in October cannot be a good sign.

After this lovely discussion I got to do the standard “drunkard” tests. I can still walk a straight line, walk on my toes, walk on my heels, touch my finger to my nose and then her moving hands, see the correct number of fingers, etc. There was a medical student with her during the exam which was interesting. They were both fascinated at how far up I was able to get my feet when walking on my heels. We then had a nice discussion about Ehlers-Danlos and I was able to help education the med student. It almost seems as if the Ehlers-Danlos symptoms are making having MS easier than it would be otherwise. I don’t have the spasticity symptoms that can accompany MS. I may have poor balance, but my bendiness keeps me from falling over. I’m not sure there is any medical evidence behind this, so it’s just an observation on my part.

If I failed any of the drunkard tests, she didn’t mention anything. I’m pretty sure the only part of the exam that showed anything was the eye exam. I can still read the 20/20 line without glasses, but my right optic nerve is still pale and my color vision in that eye is still decreased. I’m pretty positive this is a permanent condition at this point. It’s generally not annoying, except that I’m having a hard time getting used to taking pictures with my left eye (I know, I should use the screen on the digital camera, but there’s still something about looking through the view finder that I can’t give up.)

We then talked about next steps. I need to get the brain MRI since I won’t be doing that as part of the study. That’s scheduled for next week. I don’t think they’ll find much. MS seems to be eating my spine, not my brain. Once we have those results, we’ll talk about whether or not to do a course of IV steroids again. I really hope to avoid that. We’ll also have a talk about switching off Copaxone and moving over to Rebif.

I’m less than thrilled about the idea of switching to Rebif, but when comparing the side effects of the interferon drugs (e.g., flu-like symptoms, potential liver damage, etc.) against the continued degradation of my spine, I think Rebif comes out on top. It’s only 3 times a week, so at least I will have less shots! There’s a positive part, right? Also, since I won’t get to do the study, I get to keep my Mirena (yeah!) I’m trying to look on the bright side. I have way fewer symptoms than I probably should have given the number of lesions on my spine and if starting Rebif will help fight the progression of my MS, I’m going to give it a try.

October 27, 2009


Autumn is one of my two favorite seasons. I love the times of year when the world around me is in transition. I love the more temperate weather. I love the colors of the trees as well as the smells and tastes of fall foods. I love taking out sweaters, jeans, and jackets. I love spring, too, with it’s beautiful colors and emergence of life. I love being able to pack away those heavy clothes and dig out light weight clothing. I love that fresh produce is plentiful again. However, spring was always a bit less loved than autumn, because with spring comes tree pollen and tree pollen has always made me sick.

Unfortunately, autumn hasn’t been greeted with completely open arms anymore either. Since 2001, autumn has been a time when my optic neuritis flares up. My first attack was in October 2001. I now know that was probably my first MS relapse.

This October is kind of unique for me. The past 7 Octobers I spent expecting the optic neuritis to come along, but didn’t think much of it. After all, I had been told it wasn’t MS by a prominent doctor. It wasn’t until last year’s relapse that I even knew I had MS and that news didn’t come until closer to Thanksgiving.

I’ve been viewing this October as a test. Would my eyesight deteriorate at all this October, my first on Copaxone? When I started the shots, I always thought I’d have some indication of whether they were working once October came.

Well, we’re almost at the end of October. My eyesight never did recover after last year’s optic neuritis attack, so perhaps this isn’t a perfect test of Copaxone. I always see through my right eye as if I am looking through a fingerprint on a glass. I do think the vision is slightly worse than it has been the rest of the year. Unlike last fall, I do not have any pain behind my eye and I can still roll my eyes at my girls without any pain. I suppose that’s a good sign. I am concerned that the vision is slightly decreased, that the eye just feels different, and that it is puffy. I’m not sure why it’s slightly larger than my other eye. My chiropractor is actually the one who noticed it today when he asked how I was doing. I see Dr. Specialist tomorrow and look forward to seeing what she has to say.

Tomorrow is when I get the results of my latest MRI, which was a couple of weeks ago. I opted for just the spine MRI in case I end up participating in that drug trial I mentioned a couple of posts ago. The spine is where almost all of my lesions are anyway, so this is the part that I am very anxious to find out about. Here’s a picture of my spine from the MRI images I got to take with me on CD. I’m not quite sure what I am looking at, but in comparing this to other “normal” spine images I was able to find online, there’s definitely a lot more white on my cord than it seems there should be.

Spine October 2009

The amount of activity on my spine will be the clinical proof of how well or not well the Copaxone injections are working. If the activity level has remained the same or decreased, then I’ll have the Copaxone to thank and will be able to consider participating in the trial. If there’s activity, then we’re going to have to have a completely different drug talk and I’ll have to consider changing therapies. My fingers are crossed and I’m hoping for the best, but if you could send positive thoughts my way tomorrow afternoon, I’d greatly appreciate it! I’d ask you to send chocolate, too, but Posey already covered that part. (Thanks, Posey! The combo of dark chocolate and pear is extremely yummy!)

October 19, 2009

A Most Unique Breast Cancer 3-Day

For the past 2 years I’ve been involved with the Philadelphia Breast Cancer 3-Day as a Crew Captain.  As some of you know, I lost a friend (Posey‘s best friend) to Breast Cancer in 2007.  She lost her life just before Christmas 2007 at the age of 35 after an 8 month battle against a very aggressive breast cancer. She discovered a lump while nursing her 7-month old daughter. She was a fighter and her strength was amazing and inspiring.

Just after learning about her diagnosis I decided I’d participate in the 3-Day and was a Crew Captain in 2008. I always thought I’d walk the event one day, but that year I wanted to help in a more direct way to help the thousands of people who embark on the 3-Day, 60 mile journey.  Last year I had an amazing time at the 3-Day, but had a very difficult time at night.  I was shivering and freezing and just couldn’t warm up, despite many layers of clothing and a ton of “hand-warmers” shoved into my sleeping bag.  One month later I was diagnosed with Multiple Sclerosis and it all made a whole lot more sense!  Now that I know walking likely isn’t the best option for me, I plan to keep helping in that more direct way. I love serving on the crew and have found my place in the 3-Day.

I was really excited for this year’s event.  I was assigned the same role as last year, so I was confident and knew what I was doing.  I had a larger crew assigned to me than last year which was pretty cool.  I got to meet some of them during the Crew Extravaganza in September and instantly knew I had a fantastic team.

About a week out from event, I started to look at the weather forecast.  I was monitoring it for a different reason than most people.  My concern was whether or not I’d be able to stay at camp.  After my difficulty last year, I received the okay to sleep off-site if needed.  I decided if the weather at night was going to be less than 45 degrees, I was going to commute instead of staying at camp.  The weather forecasts were looking pretty ominous.  A Nor’easter was coming our way.  It was going to be cold, wet, and windy starting Thursday, which is our Crew Day where we train our crew for the event.

Crew Day arrived and as promised by our weather forecasters, the conditions were far less than ideal.  It was wet, cold and windy.  Philly forecasters have been wrong more often than right (so it seems), so it sucks that they got it right this time.  Despite the weather, all but one of my team arrived at Crew Day and were so enthusiastic!  We had a great day and were ready for whatever came our way the next 3 days.  The plan at the time was to give up on trying to sleep at camp and we’d relocate to a local high school.  That solved my problem of sleeping outdoors, so I was thrilled with the arrangement.

Each year I have walkers stay at my house since I’m the closest to the starting point.  My mom stays overnight to be here with the girls in the morning while my husband takes on the role of chauffeur, driving me to the opening site and then the walkers there a couple of hours later.  I was heading home to get dinner together for our friends when I got a call on my cell from someone on my crew team.  She was still at Crew Day as her daughter was part of opening ceremonies and they were  practicing.  Word had just come out that Day 1 of the walk was canceled due to the weather and the fact that there was no way to set up camp.  It was just too wet and windy to even set up the event tents.  Without a dining tent, it’s impossible to have a camp.  Also, the medical team was extremely concerned about everyone’s wellbeing.  So, the plan changed to having Opening Ceremonies at Camp 5 p.m. Friday evening.  They thought things would improve enough by then.  We’d have dinner and Opening at camp, then get bused to the school to sleep, and begin with the walk on Day 2.

I immediately started calling my crew, many of which were in from out of town and staying at hotels.  It occurred to me that I was missing some cell phone numbers, but after a few hours I was able to track everyone down.  Only 2 of my team said they were heading home and the rest were hanging in there.  It turns out that not having the event was even more work for the Captains, Coaches, and Staff than having the event!  Most of my team were really disappointed, but they were hanging in there.  I have such an awesome crew!!

Well, that plan didn’t last for long.  By the next morning things had changed yet again.  My friends and I were headed over to the mall where opening ceremonies would have taken place.  We had a feeling other walkers would be there and we wanted to walk a bit and cheer them on.  Sure enough there were over a hundred people walking there.  It was really cool!  We had a nice lunch together and by then my phone started ringing.  My husband was stuck fielding calls at home and I knew it was time to get back to do another phone chain.

Day 2 had also been canceled.  The plans seemed to be constantly changing.  There were a lot of really angry walkers.  They had worked so hard to get ready for this event and this was not at all what they expected.  Some of my crew were disappointed as well.  Most of them checked out of their hotels.  It was just too expensive to stay.  A couple more people said they weren’t able to come back when the event finally happened, which I completely understood.  They are all going to try again next year though!  There’s some fear that this will turn people off to future events, but so far everyone I’ve talked to is signing up for 2010!

I was reading the message boards and sent an update out to my crew that there were a lot of walkers heading to local malls.  By 7 p.m. Friday night, one of my crew e-mailed to suggest that we go to King of Prussia on Saturday and set up a “pit stop” for the walkers.  By 9 p.m. we had a plan and many of our team were on board.  Some of us were bringing candy, others were going to offer foot massages, some were going to do face painting, others were bringing decorations, tables, chairs, etc.  We decided to set up outside of New Balance since they are one of the national sponsors for the 3-Day.

We showed up at 10 ready to go.  The folks at New Balance were so supportive!  Even more of my team showed up than I expected.  We also had someone from another crew team join us.  We set up an awesome “pit stop” with candy, posters for walkers to write messages, face painting (which was a HUGE hit!), foot massages, a photo area where we took team pictures for people with a “thank you” sign so people could use them in their thank you messages, information about breast cancer, stickers, etc.  It was fantastic!  We even raised a bit of money for the cause!

At 1 p.m. there was a large rally outside a store at the other end of the mall from where we were.  We all headed over there.  Turns out there were 600+ walkers!  The 3-Day staff brought in a truck with lunches for everyone.  My team helped distribute the lunches, get people water, etc.  I was joking that I was wondering just how many crew jobs I could do in one weekend.  I was having a blast!  After lunch we went back to our pit-stop until around 4 when things were quieting down at the mall.  I had to get home anyway as my walkers were coming back to stay the night.

The plan that had come out later on Friday seemed to stick.  The walk was now a Breast Cancer 1-Day!  The walkers would come to camp by 7:15 when the route would open.  Our team had to arrive at the Closing site by 4 a.m.  We’d do some work there and then go over to camp to resume our regularly schedule responsibilities.

We got to camp by 5, I think (I was trying not to pay attention to how early it was since I got up at 2:45 for all of this.)  Soon after that, walkers started to arrive.  It was sad to see camp without the field of pink tents, but as soon as we got there we understood exactly why they had trouble setting things up.  It was a muddy mess!

By 6:45 our team was in place to scan everyone out onto route.  I estimated that there were about 2,000 walkers and I was only off a bit.  There were about 2, 500 walkers out on Sunday!  That’s only about 500 less than we expected if the event went off as originally planned.  I was so impressed with the walkers’ determination.  After camp cleared out we helped clean up and then got on a bus to the holding site.  Usually that’s a nice park, but this year it was smart to have it inside, so we hung out at a high school for several hours.  While we waited for the walkers, we sorted all of the mail that usually gets distributed at camp.  I love doing this kind of stuff, so it was a fun way to pass a couple of hours.  Soon enough our team got called to get back to our normal role as walkers were arriving and it was time to check them back in.  We did that for a while and handed out “relo” legacy pins, too.  Then volunteers came in and took over so that we could enjoy some time with friends before closing.  I got to see Posey and our other friend and her mom.  It was great to spend even a little time with my 3-Day team.  The time for crew to hop on the bus to closing came too soon.

We arrived at the Navy Yard for the closing crew meeting.  By then I had huge blisters on my feet.  The snow boots I wore all day were not really meant for this kind of use, but at least my feet were warm and dry.  My physical state was easy to explain.  My feet hurt and my body was tired.  My right eye’s vision was a bit more off than usual.  It was warm at the holding site and I had on about 5 layers of waterproof clothing.  I really only noticed my eye when I went to take pictures.  For years I’ve used my right eye to look through the camera.  Now when I do that everything is blurry.  It’s hard switching to the left eye.

I’m having trouble formulating the right words for how I felt emotionally.  Last year by this point all of the excitement was carrying me through.  There was a different feeling in the air this time.  There was little cheering where we were doing the scanning because there wasn’t space for it.  Walkers were coming back in a different mood.  Some were excited, but others seemed like they still felt cheated out of the 60-miles.  It was hard to know what to say to them.  By this time last year, I felt like we had bonded with the walkers.  We had helped them during their final steps into camp, we had called medical teams for them, we had given them hugs as they came off of the sag buses disappointed, we were starting to know their names as we reached for their credentials.  I didn’t get those experiences this year.  I guess what I was feeling instead was pride. I was so proud of everyone for making the best of less than ideal circumstances.  I was proud of the grassroots efforts over the weekend to organize walks at malls all over the tri-state area.  I think they got even more press and attention for the cause than in typical years.  I was proud of my crew for hanging in there and for being so creative and determined to help the walkers wherever we could find them.  I’m in awe of the staff who pulled all of this off.  It was truly amazing.

I think everything really hit me during the closing ceremonies.  If you’ve ever been to one of these, you’ll know that walkers come into the ceremony first and fill in a giant circle.  Then crew enter and file-in in front of them.  Then we all take one sneaker off (or boots in the case of many crew this year) and hold it up as the breast cancer survivors walk in to honor them.  The survivors fill-in the inner circle in front of the crew.  That is when my heart warmed.  That is when I remembered why we are all here.  That is when I remembered why we need to continue to fight for a world without breast cancer.  Yes, I have MS, but it’s not going to kill me or rob me of time with my girls and my husband.  Breast cancer kills thousands and thousands of people.  An extremely aggressive form of breast cancer is why my friend wasn’t one of the women in the survivor circle last night.  We cannot stop fighting this disease.  We need to keep fighting so that the next generation of women never have to worry about breast cancer.  We all deserve a world free of breast cancer.

October 2, 2009


Filed under: Uncategorized — by mseds @ 9:32 am
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Today I’m more tired than I have been in a long time and I’m trying to figure out why.  I had a particularly busy few weeks (hence my lack of posts!), but this week was pretty calm.

Could it be that I’m finally exercising?  I just joined a gym and actually got there twice this week!  I figured my plan to lose weight by eating better wasn’t working, so it was time to try something else.  I found a place nearby that has an awesome family exercise room with a moon bounce, climbing area, etc. for the kids and bikes, treadmills, stairmasters, etc. along the outer edge for the adults.  The girls LOVE it and it gets us working out.  I even got to the pool with Big Sister one evening.  She’s recently overcome her fear of water and I love doing water aerobics.  I learned quickly that I can’t do land and water exercise on the same day.  Our first time there, I over did it.  I rode on the bike for about 35 min. and walked on the treadmill for about 15.  That afternoon we went to the pool and I did a couple of laps and some water walking.  That night my hips were in such pain!!!  Splitting things up this week worked much better and I didn’t have any pain.  But, I do think my body may be demanding more rest to make up for all of this!

How about lack of Vitamin D?  I started taking supplements a month ago.  I take them when I do my Copaxone shot each evening, but sometimes forget.  I realized that I’m more tired the following day if I forget the supplement.  But that could just be that I was tired enough to forget to take it in the first place, so that may or may not be the cause.

Maybe it’s my diet?  I’ve eaten a ton more salt this week than I usually do.  I fasted on Monday for Yom Kippur and hosted the break-the-fast meal here.  We ended up with a lot of leftovers, consisting of mostly high-sodium foods like lox, smoked salmon, whitefish salad, etc.  Since I couldn’t let such great food go to waste, I’ve been eating it (see why I needed to join the gym?!)  I know there’s been a lot written about the importance of an anti-inflammatory diet and I’m sure I’ve been doing the opposite this week.  It’s time to get back to VitaMuffins for my morning snack instead of lox and bagel!

Perhaps it’s just the season?  Every October my optic neuritis gets worse.  I love fall and cooler temperatures, but my MS symptoms increase.  I’ve not been able to find any information on the seasonal nature of MS, but this has been happening every fall since 2001!  It seems strange to me that fall would be the trigger and not summer.  I’ve been complaining about my eyes the past couple of days.  This morning I realized that my vision in my right eye is a bit foggier again.  My next brain and spine MRI are in a couple of weeks and I’m so curious to see what it shows.

Maybe I’m just doing too much and need more sleep!  While I should probably stay home and rest this weekend, we’re heading down the shore for the MS Bike 150.  My husband is volunteering and the girls and I will be there to cheer on and thank the awesome riders!

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