Volleyball – Day 5

When Ed and I first met about 5 years ago now he was very into volleyball.  If fact sometimes he played three times a week.  That continued for a while during the time that we were dating, often with me accompanying him.  I can’t really say that I am much of a volleyball girl.  Actually I’m not much of a sports girl at all.  Though I did play volleyball and basketball in middle school that didn’t last long.  Can you believe that I didn’t watch one game of the World Cup?  In fact if it wasn’t for Facebook and Twitter I wouldn’t have even known it was going on.  I used to like football, that was one of the things my Dad and I could do together.  As it turned out I became quite a Denver Broncos fan but that ended when Elway retired.  The only sport that I can truly say I enjoy going to know is minor league baseball.  It is so family oriented and relaxing that I don’t even mind that there is a ballgame going on in front of me.

Once we got married he was down to playing twice a week.  The only problem was that the Sunday game often took up the entire Sunday and that was cutting our family time in half.  After G. was born Ed agreed that the Sunday game was just too much.  He continued to play every Tuesday though with my complete support.  I knew that I had things, like my cooking club, that I would hate if he made me give up and volleyball was his thing.  He had been playing on this team for at least 5 years and some of the guys he even knew from college.  I had sworn that I would never ask him to give it up.  Then I became pregnant with E. and MS reared it’s head in a most heinous way.

I started to lose sensation and have mobility issues the moment my body realized that I was pregnant.  Each day it would get a little worse till I was about five weeks pregnant and I couldn’t even carry G. anymore for the fear of dropping him.  K., my older daughter, and I worked together for the next three or four weeks to take care of G. on Tuesday evenings while Ed went to volleyball.  I couldn’t be alone with G. but I hated telling Ed he couldn’t go.  Finally there was no other choice, as I continued to deteriorate, and I told him he could no longer go on Tuesday nights, that I needed him at home.  That was over two years ago now.

Once I got some treatment and started to improve he still wasn’t able to return.  At that point I was at least in my second trimester, probably only at about 60% functionality, and had a toddler to deal with also.  He continued to stay home through my entire pregnancy.  Once E. was born there were the issues of me recovering and taking care of two very needy little ones.  He continued to stay home.  Many times in the last year, once I felt I was as close to 100% as I was probably ever going to get, I told him that he should go back to volleyball.  He did make it a couple of times, but most times either he or I would decide that it really wasn’t a good night for him to leave me alone.  Some days I was just too depressed, others I was exhausted, and still others I was just sick.

The last time he did go he hurt his knee.  This time at least he was the cause of his not going, not I.  I won’t lie, though, and tell you that I wasn’t a bit happy and relieved but this circumstance.  At the same time I still felt guilty.  Through all of my illness and pregnancy I think I only missed my cooking club two or three times.  Granted that my club often came to me or I would get a ride with someone and Ed was healthy enough to take care of both kids, it still didn’t always seem fair.

Once I realized that today was going to be one of my good days I knew exactly what my gift was going to be.  Ed was going to volleyball with my best wishes.  No guilt, no I “think” I’ll be OK, no “as long as you come straight home after the game”, nothing except “Have fun, I hope you win, and go out with the guys afterward if you want.”  I will say that G. and E. weren’t as happy to see Daddy go but even G. was able to say “Have fun and I hope you win” with a big hug as Ed left.

As I sit here writing this I know that their game has been over for a little more than twenty minutes and they are probably playing with however they could recruit until they get kicked out by the management.  I’m also assuming that he will probably go out with the guys and I hope he does if that is what will make him happy.  However I know he won’t go without at least wondering how I did tonight and if he really shouldn’t just go home.  How did I get so lucky?  Hopefully this can become a regular Tuesday gift tradition!

p.s. As I am proofing this Ed called to check in on me.  They lost 2 and won 1 but he is happy because they played well.  I’m happy because he is happy.

It’s not all about me – Day 4

Hmmm….this 29 Gifts in 29 Days thing is not as easy as I thought it was going to be.  I wonder why that is.  I think one of the hardest things is that I don’t get out much these days so opportunities don’t as readily present themselves to me.  The funny thing is that I absolutely LOVE giving to others.  In fact sometimes to the point where Ed often just gives up, shakes his head, and says “Do whatever makes you happy.”.  It’s possible that another part of the problem is that the things that I would normally give in a day I don’t think count.  They are things that I just naturally do.  They are not necessarily “mindful”.   So once again the evening has come and I find myself tired and in my bedroom not yet having given a gift and despairing for the third time in a row that I might have to start over.

Then I notice something that a friend has done that really hurts me.  It’s not the individual act that is so hurtful but that it is a symbol of many things that have come together cumulatively to really make me feel sad, and taken for granted.  I must tell you that lately I’ve been really upset over my lack of local friends.  I know that is simply a byproduct of us only having one car so I can’t make it to playgroups and other outings, and   when that isn’t the issue, then there is the heat I have to contend with, taking care of two toddlers at once, my often overwhelming fatigue, and the fact that I live a ways away from the friends that I do have that like to do things and I don’t feel that it is always fair to leave Ed home with the babies.  I’ve also had one friend move in the last couple of months.  They didn’t move far away but we haven’t seen them since before the move.  Even though I know that she has a lot of things going on right now and a lot of stress, I admit to feeling forgotten about.  The thing that the first friend did got me thinking about friends in general and the friend that recently moved.  I all of a sudden knew I had my gift!

It was time to forget about myself.  My friend who had moved had not done anything to purposely hurt me.  In fact she was the friendwho was around a couple of years ago when I really needed someone.  I almost became paralyzed from MS when pregnant with my youngest daughter and she came to see me every week and often offered to help with other things.  I know a lot of the causes of the stress that is currently effecting her and yet here I sat feeling sorry for myself because we hadn’t seen each other in a while and basically blaming her for that.  No more.  Her son’s birthday is this Sunday and even though there has not been a B-Day party invite, to tell the truth I don’t know if there is even going to be a party, her son was a great friend to G. and we still care and think about him a lot.  We had not gotten him a present but tonight that changed.  I had a lot of fun going through his wish list and choosing things I hoped he would love.  I might not get to see him open them but they are gifts of love and love doesn’t require such niceties to continue.  At the same time I realized that I had neglected to get them a housewarming gift, something I think she would never fail to do.  To tell the truth it’s not something I usually do, but tonight it felt perfect.  I hope she loves it.

It really is good to stop dwelling on my own problems for a little and to let go of perceived slights.  I wish them the best!  Now I am wondering what will be my gift tomorrow.  I like that many of them have surprised me.  If they were things that I would do normally, without mindfulness, I don’t believe that they would have caused such joy in my heart when they were given.

Let’s go to the store – Day 3

I must say that today was much better than yesterday.  I didn’t wake up with much more energy than the day before, in fact I almost overslept,  but my mind has a way of over-riding my body when something needs to be done.  We got out of bed at 8:50AM with my cooking club members due to arrive in an hour.  No problem you might say, except the kitchen and bathroom still needed to be cleaned, trash and recycling taken out, and various other details that were asking to be taken care of.  After about a half hour of running around I was already done and told my poor husband the rest was all his as I went to lay down in a very cool room and wait for everyone to arrive.

When they started to arrive all I can say is that happiness took over and I felt good to go.  It really makes me think more about the often alluded to mind/body connection.  These seven women and one man are truly some of the nicest and most interesting people I know.  We meet once a month and for the past 5-6 years I can honestly say that cooking club, some of the people have come and gone, is one of the greatest joys in my life!  Today was no exception.  We had wonderful food and great conversation.  However, all too soon, most were off to other activities for the day.  A few stayed and we played a game or two and had awesome girl talk.  That too, though, came to an end.

As I looked back over the day I saw a beautiful experience but I couldn’t see any gift I had given.  Ed started asking about dinner and then it came to me.  This was my opportunity!  Lately I always make Ed go to the store and do the shopping.  Today I would go and not only would I go but I would invite the young lady who lives with us downstairs to go with me and let her drive the car.  You should have seen her happiness!  She is still learning and has no car of her own to practice in.  I also invited her to join us for dinner as her boyfriend had gone out for the evening and she was alone with the baby.  We went to the store, she only scared me a couple of times, had a good talk, and then when we got back home Ed and I showed her how to cook the food.  Once again she was very excited.  She seems to really want to learn to cook and eat more healthily.

To top the night off I asked G., my 3-year-old, if he wanted to play a game.  You might not think this is much but I almost always refuse when he asks to play a game.  I don’t have the patience needed when he won’t wait for his turn or doesn’t follow the rules.  I know he is only 3 but it is still really trying to me.  Then you add E., who is 19m, to the mix and I am almost ready to scream.  Tonight  I did it because I knew how happy it would make him.  It was completely worth it!

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.

Who is this girl in the mirror?

This morning is the first time that I had looked at my blog in quite awhile. You could have colored me orange when I realized that it had been more than two and a half months since I had last updated you.  I feel like I should introduce myself again and direct any newcomers to the short version of my story up till now.

When I last left you I had just signed up for an Instructor II class and had formed my first ever MS Walk team called Next Steps. I made the decision to sign up for the class in the beginning of January, during a refresher class I was attending to keep my certification as a paramedic. Shortly after  I decided to start the team Next Steps to participate in  MS Walk:Columbia 2010. The class would have given me the ability to teach a subject matter I really enjoyed and also bring in some extra money for the family. The Walk team was something I have been feeling that I should be doing for years.  I must have been in a very good place mentally for me to believe I could tackle both endeavors with my usual obsessive/compulsive need to totally involve my self in a project and be happy with nothing short of perfection.

On the way to the first class  I tripped and fell twice, talk about a confidence destroyer when you are depending on strength to get you through. I sat in class, only slightly bruised, and listened to all the requirements and projects that needed to be completed in the next six weeks and found myself feeling incredibly overwhelmed.  I drove home almost in tears.  For one of the first times in my life I was realizing that I just might not be able to do it all.  It was time to take a long look in the mirror and see who it was that was actually looking back at me.

The face that I saw was incredibly familiar, maybe a bit heavier, some who don’t mind their manners might say a little older, but otherwise there I was.  That is until I looked past the surface and into the hazel eyes that showed me my real reflection.  I was no longer the young, physically strong, single, independent, conquer the world, would take on anything, me that I still found myself often imagining that I was.  Instead I saw a middle-aged wife and mother of three, often housebound, who had a chronic disease, which whether I liked it or not, left me chronically tired, could shroud me in depression, take away my strength, and make me dependent whenever it so chose with no input from me.  However when I looked a little deeper there it was, a glimmer of my old self in a new form.  A self transplanted into a new situation  and a body with physical limitations, but a self that still dreamed of participating in live, raising intelligent and happy kids, helping those in need, and being a productive member of society.  That self was just going to have to fight a little harder and accept the new reality in which it existed including the limitations that came with it.

Three days later I withdrew from the Instructor II class.  When you can no longer, or should no longer, try to do it all one must decide were their priorities are.  I have a wonderful husband who already works himself to exhaustion every day to help me.  He had given me his blessing to take this class because, I believe, that he often feels desperate to find something that will make me happy, draw me out of my depression, allow me to feel connected to something, feel alive.  However this all comes at his, and the rest of the family’s, expense.  This class or I as an individual, was not going to, and never should, be something that leads to the collapse of the rest of the family.

I had already become very involved in team Next Steps and to be honest, at that point, that is where my passion laid.  It fulfilled all my needs to be alive, connected, a productive member of society, and I was helping myself and my family at the same time.  If I can only significantly involve myself in one thing at a time it’s going to take some time to get use to but it’s the new face in the mirror, the new me, and all things considered I really don’t have much to complain about.

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!!!!

Another brief interlude from the present…An hour late but good news

Today I had my first appointment with my new neurologist.  We were 20 minutes early for the appointment, but weren’t seen until an hour after our appointment time.  I am actually not complaining.  I think I would willingly wait  2+ hours to be seen at this facility.  Admittedly, I would find it easier if I had a good book as a diversion, but I forgot to bring one today.  However, even if I had remembered a book, I was so nervous that I don’t think I would have been able to read a page of it.

I am lucky enough to live in an area that has an abundance of excellent hospitals, including Johns Hopkins.  For MS, they are viewed as one of the best in the country, as is evidenced by the number of people who traveled from other states just to be treated there.    When we arrived at the neurology floor,we became aware of one downside:  they are now charging a “facility fee” of $73 per appointment, since the building is now classified as an outpatient building.  Luckily, if there are no relapses, we should only have one appointment a year.  However it is now cheaper to go to the ER than to go to a doctor’s appointment…not good news for the local EMS crews out there!

The doctor himself came out to greet us and bring us back to the examining room.  He had taken the time to get to know my history prior to this appointment, though he did go back over everything with me.    This doctor was taking over my case from the previous neurologist who had left the facility.  Since I was not considered a “new” patient, he said that we were only allotted 30 minutes for the appointment, but he was sure we would take longer than that since this was our first meeting.  This comment impressed me very much, as did several other things:  He listened respectfully to everything I had to say; he answered every question without talking down to me; he did not look down on me when I told him what it now takes me to get to sleep (which I know is unhealthy); he was supportive when I broke down when discussing how I felt I had lost a lot of who I was in the last two years; and he decided to test me for several possible complicating factors before throwing more drugs at me.  These in and of themselves would have made for a good appointment, but the best part was that he said he saw nothing in my file or my current examination which made him feel that my my subtype had changed from relapsing/remitting to secondary progressive.  That was what I had been really scared about when approaching this appointment.  The only thing that gives me any concern is the fact that I do not have a way to reach him at any time like I did my last doctor, and that ability proved extremely helpful on more than one occasion.  I am also thinking about looking for a more holistic neurologist to talk about diet and lifestyle changes that have proven helpful with other MS patients.  Johns Hopkins is the best, but they are all about medicine.  Many people have had success with more holistic treatments, so I’d like to give that a try too.

One of the other nice things about Johns Hopkins is that you can get everything done in one place.  We said goodbye to the neurologist, sat in the waiting room for about ten minutes, and then had the eye test done.  We went back to the waiting room for another ten minutes and then I was called to get my blood drawn.  The only thing we didn’t accomplish today,besides eating lunch at a reasonable hour,  was an MRI.  We were told that they never schedule them on the same day.   I go back in three weeks for that.

I’d like to thank all of you who wished me luck today and were keeping me in your thoughts.  Also, an extra special thank you to my friend Kim who watched our babies for us today!

To end this post, I must once again express my unending gratitude for the generosity and support being shown to me and my family as we continue to fundraise and recruit walkers for team Next Steps.  We have been more than overwhelmed by those that have reached out to us and continue to do so daily.  THANK YOU ALL!!!!

Next post it’s once again, back to the past.

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.