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.

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.

The temporary disillusionment of “Ed World”

My last couple of posts were in regards to my fight to get treated for my relapse.  Unfortunately, that was not the only battle I had going on at that time. I have briefly mentioned “Ed World” in a few prior posts, but it bears repeating.  In “Ed World,” nothing goes wrong, and if there happens to be a glitch in there somewhere, it will work itself out and always for the best.  Ed came home early from England when things started going down hill.  For a while however, that was really his only acknowledgment that things were not as they should be.

My Mom had to drive a two hour round trip every weekday to help me take care of G. and couldn’t leave until Ed got home from work.  However, Ed would regularly get home 15 to 30 minutes later than expected, which made things more difficult on my Mom in many ways.  Ed was part of a volleyball team that played on Tuesday nights, and instead of staying home and taking care of G. he would ask me if he could go, and leave it to our then 18 year old daughter to take over his responsibilities.  He never said no to anything himself.  He always made me be the one to tell him over and over again that he couldn’t leave me alone with G. and that it wasn’t K.’s responsibility to give up her life to take care of his kids.  K. was becoming very resentful.  Everyone was making sacrifices at this point except Ed.

I was making all the phone calls to the doctors and every time I got told “No” I lost more of my will to fight.  Instead of helping me fight Ed just accepted everything that was said as though that was all there was to it.  The reason for all of this?  In “Ed World,” things were somehow just going to magically take care of themselves and I was going to get better on my own.

The night that I got my first steroid treatment, I tore down “Ed World.”  I’m not sure what finally broke in me and caused me to do it, but do it I did.  I said “Goodnight” and got as far as the kitchen , which in our house is about 5 feet, and I stopped.  I stood there and debated with my self for a minute and then I turned around and walked back.  Not having been there, you will never really be able to know how completely I destroyed “Ed World” that night.  I looked at him calmly, sadly, and full of disappointment.  I told him that he had let me and our family down.  This was not a game.  I was not getting better, but getting worse.  This would not magically take care of itself.  Every time I had to tell him that he couldn’t go somewhere because I couldn’t take care of G. by myself, it made me feel even worse than I already did.  He refused to accept the reality of the situation, and refused to fight for me.  He had made me do all the fighting and I could no longer do the fighting.  I and the rest of the family needed him to wake up and step up.  I then turned around again and went to bed.

The next morning, Ed was a new man. He has since become my savior and I could not ask for anything more from him.  These days I have to force him to go out if he thinks it will put undue stress on me or thinks I am not feeling well.  He has not once left my side and is right on top of things should it seem like I might be having any kind of relapse.  I am a very, very lucky woman.  I regret the temporary destruction of “Ed World,” but don’t worry, it’s back and as strong as ever.  Now it just has a slightly better sense of reality when necessary.

Anyone, Anyone?

As soon as we returned from the ocean I called my neurologist’s office and spoke to his secretary again. Not only did she reiterate that I would have to wait FOUR months for a “new” patient appointment, but that she had spoken to the neuro’s nurse and she said that they couldn’t do anything for me anyway because I was pregnant. I think I threw the phone across the room after hanging up.

My symptoms were slowly getting worse: a little harder to walk, a bit more numb, less endurance for strength activities. The week after we got home, Ed left for a business trip for England, leaving me home alone with G. who was now about eight months old. It was just a week and I wasn’t 100% but I was still able to take care of my baby.

I called the OB that I had used with G. to get my first prenatal appointment. They said that I first had to come in for a pregnancy test. I told them that the pregnancy had just been confirmed by an emergency room, but that wasn’t good enough for them. They asked me if I’d like to make an appointment and I said “No”. I had been thinking about changing practices anyway since they were so far away, and this was the perfect motivator. I asked around and finally called a much closer office who still couldn’t get me in for almost a month, but at least believed that I was pregnant.

(TMI warning) A couple of days later, I noticed a small spot of blood when I went to the bathroom. I called the OB because if there was something wrong with this pregnancy, I’d rather know sooner then later so I could start getting some treatment for my MS. The OB office had me come in that day, and when they did the ultrasound, they found a pregnancy, but not as developed as they would have expected for my dates. She said that it didn’t necessarily mean anything and to come back in a week and everything could be different.

Unfortunately, things started going downhill, for me, at a quicker pace. I ended up calling my mom and telling her that I was afraid to carry G.; afraid that I would lose my balance and fall with him. I also had to call Ed and ask him to come home a day early. By the time the OB appointment came around the next week, I had convinced myself that the pregnancy would be over and that my MS attack could now be treated properly.

When I finally got to the OB appointment, I didn’t even have the strength and balance anymore to climb up on the examining table myself. When the Dr. walked in I was a crying mess. The little girl fighting with her DaDa in the kitchen right now proves how wrong I was. Things had progressed and we saw a little fetus with a tiny heart just beating away. I hate the fact that there was even one moment where I was expecting/wanting any other results. All I know is that I was feeling so desperate and abandoned, and that would of solved those problems. God knew better and I try to thank him everyday for the little blessing I used to call “my little mouse”. The OB said that she would give me a referral to a High Risk OB but she thought that I would have to wait untill I was out of my first trimester to start any kind of treatment for the MS.

I called the High Risk OB and they said that they don’t usually see patients until they are in their twelfth week. I don’t remember exactly the question I asked next, but the answer was “of course she can be treated”. After I hung up the phone something about that statement just stayed with me. I assumed she meant that at twelve weeks I could be treated, but there was this little voice inside me that just kept asking, “What if she meant I could be treated now?” After much internal debate, I decided to call back and get clarification. It turned out that she meant of course I could be treated NOW! After hearing my story, they had me in for an appointment the next week.

Meanwhile, my condition was deteriorating rapidly. Ed had to take the box-spring out from under our mattress so that I could climb into bed. Our couch had to be put on risers so that I could get up while pulling on something. I could not walk without using the wall for balance. My mom was coming up every day because I couldn’t take care of G. at all. I needed to sit in the shower and have Ed wash my hair for me, because I didn’t even have the strength in my arms to hold them above my head.

By the time the appointment came along, the car had to be driven across the grass right up to the steps because I couldn’t handle the unevenness of our lawn. I could barely walk into the building and definitely could not do it without help. Thank goodness for valet parking. Once we got into the waiting room, I sat in the closest seat and made Ed do anything else that required getting out of that seat. When we were called back, I would’ve sworn that I had never seen a longer hallway in my life. We all know how wrong I was, but it sure felt like that to me. A nurse took one look at me and went and grabbed a wheelchair. The baby was fine was doing great and the doctor said that she saw no reason that I could not start treatment immediately. The biggest possible side effect she mentioned was a cleft palate. It turns out that there is a slightly higher occurrence of cleft palates in women who have taken high dose steroids during the first trimester, but all they had was a correlation and not causation. She was not worried at all. We thanked her immensely and she called my neurologist as soon as we left. I had an in-home 3 day course  of high dose Solumedrol two days later.

6 years, 1 relapse, 1 wedding, and 1 baby

Well the title sums everything up nice and neatly, but I guess I should fill in some of the details for those of you without accurately vivid imaginations.

K. came home, finally, and spent the first year learning English as we got to know each other better.  We had as normal a life as you could in such circumstances.  After a year, we chose to move.  Towards the end of the move, we were doing it a little bit at a time as the location we were moving to allowed for us to move in installments, sometimes a couple a day.  It was at this time that I began to have sensory problems with my right hand.  First it got numb and then  progressed to the point where I had  absolutely no spacial concept of where my hand was or what it was doing.  My hand still worked, I just really had no idea/sensation of where it was or what it was doing.   When I would drive I would set my hand on a pillow on my lap so I felt like I knew where it was and drive with my left hand.  When I would use it to hold a cup of soda, I would either drop it or squeeze it way too hard because I could not feel how much pressure I was applying.

[orig: I went to the neurologist, and I don’t think he believed the symptoms I describe at first, but after I could squeeze his hand as hard as anyone  , he said “You’re right, you have no spatial sensation of your hand”.]  When I went to the neurologist and described my symptoms, I don’t think he believed me at first, particularly after I could squeeze his hand as hard as anyone.  Though after a brief examination where I had no clue what he was  doing with my hand, he said, “You’re right, you have no spatial sensation of your hand.”  I guess I could have been lying to him and testing him, though I’m not quite sure what purpose that would have served.  He set me up with the first of a three day course of Solumedrol in his office and then ordered the other two treatments as home care.

Have I mentioned yet that I am stubborn, do not like people to tell me how to do things, do not like people to witness my weaknesses, and that I was a paramedic?  Well, I refused the nurse that was being sent out to start the IV, figuring I could start it on myself.  I know that I have mentioned that I am a wimp, so I took a few valium so that I would relax and not care as much and applied the tourniquet.  The flaw in my plan was that I hadn’t been drinking much liquid in the last few days.  Generally my level of fluid intake is fairly low.  Also, I am right handed and was trying to do this with my left hand.  So between veins that wouldn’t pop up in my hand and just general clumsiness with my left hand, I admitted defeat after sticking myself about 5 times and called a friend to help me.  Admitting defeat was a very hard thing to do.

I completed my last two treatments and then it took me about a month to return to work as good as new.  It turned out that this little hiatus from work was a blessing in disguise.  I had been gaining weight lately and I stumbled into a weight loss group at my church during that time.  By the time I returned to work, I was able to comfortably fit into my uniform again–a uniform that was much larger than it should have been in the first place, but at least I was making progress.

When K. first came home, she hated men.  After a couple of years and some positive male role models, she decided that it was OK to allow men into our lives, so I began to date.  I went on a few first dates, dated one guy for about 8 months, and then one day I just never heard from him again.

I then decided to try this new form of dating, speed dating.  I went to three events and as it turned out I had met my future husband at the second event.  After a couple of weeks of dating, I knew that it was unfair to continue without letting him know about the MS.  So as we sat having drinks one night, I told him.  I did my best to explain what it was, what had happened so far, and that the disease was unpredictable.  He showed absolutely no concern and just said we would deal with things as they arose.  I didn’t know it then, but that was my introduction to “Ed World”.  “Ed World” is a special place where nothing goes wrong, and if by some slim chance things are not aligned properly and something does goes wrong, you don’t worry about that either because things always come out OK.

Ed and I dated for about 8 months, he proposed, and we were married just over 4 months later.  Two days after we returned from our honeymoon in St. Lucia, I got pregnant.  An uneventful (at least MS-wise) 41 weeks later, G. was born.

So there you have it: 6 years, 1 relapse, 1 wedding, and 1 baby.

From Russia with love?

After having come to terms with the depression, I continued on as normal.  I wasn’t having any flare ups and my mood was much better.  The consciousness of MS had left me again.  I had no lack of energy. On a regular basis, I would work 20 to 40 hours of overtime per week on top of my full 40 hour shift.  And let me tell you, my job was one of the most stressful you can imagine.  I was a paramedic working on the streets in what most people would term the ghetto.  No relaxing for me,  though I do think I managed a cruise and trip to England in there somehow.

Sometime around March of 2001, I ran a double fatal car accident.  The couple who died where headed to church.  Though their death was a traumatic one it appeared as if they died in complete peace.  His arm was around her shoulder, her head was resting on his chest, and there was a bible at their feet.  As I stood there looking at them, something just told me that I had to go to church for them.  They hadn’t made it to church, so I would go in their place.

I did not attend church at that point in my life, so I went with a friend of mine one Sunday.  At first I was very uncomfortable being there, but something kept me coming back.  It was a pull stronger in spirit than I was.  I went every Sunday that I wasn’t working.

About two months after I had started attending, there was a request for host families for some children who were coming over from Russia for a month’s home stay.  The hope was at the end of the month the families who had hosted the children would decide to adopt them.  I had always planned to adopt at some point, but I knew I was not in a place to do this right now, being 28, single, and living in a one bedroom apartment.  I was careful to ask all the right questions, and was given all the right answers:  the children did not know they were coming over here in the hopes of being adopted, it was just a special vacation, etc.   I decided to participate.  I could get the entire month off work and had the resources to give a child a vacation they wouldn’t forget.

Can I just say I had been fed a snow job?  The children knew exactly why they were there, and a week and a half in mine was asking to be adopted.  By the time the month was up, I had made the decision that there was nothing I couldn’t change about my life that would make the adoption impossible.

The process was begun to make K. an official  member of my family.  The process was slow for many reasons.  The fact that I was single and only 16 years older than her appeared to be the two big ones.  However, it appeared that I had forgotten just one little piece of information:  I had MS.  After almost ten months of filling out forms and refilling out forms, and sending addition forms, I was told that the adoption probably would not be allowed because of my MS.

When I heard this, I immediately decided to go to Russia and fight for K. on my own.  I really had no clue what I was going to do when I got there, but I just kept thinking that if I could talk to them, if I could show them that I had no disabilities, then I could change their decision.  My adoption agency convinced me that it would be a foolhardy stunt and would only jeopardize the adoption even further.   I cried a lot, and the next two weeks were some of the most nail biting weeks of my life.  Eventually I got a call saying that I had a court date.  It turns out that only certain subtypes of MS were forbidden to adopt from Russia, and being that I was diagnosed with Relapsing Remitting, they had no legal grounds to deny the adoption.  I was in a Russian court about two weeks later and brought K. home to the U.S. about 4 days after that.  Life with K. hasn’t always been peaches and cream, but none of the problems were due to MS.  K. is 20 years old now and is a beautiful, intelligent young woman.  I couldn’t picture my life without her.

Rips, anyone?

I knew that my family must be told soon for two reasons.  First of all, I didn’t want them to be surprised if they got a call one day that I was in the hospital.  The second reason was to minimize the guilt for not having told them already.  I knew the guilt would still be there, but I needed to face it.  I called up everyone one in my family, which wasn’t hard as the only close ones were my brother and his family and my parents.  I arranged for us to get together for Brunch at a local restaurant named Rips.  It’s no longer there, by the way.

Everyone arrived and we all pretended that it was just like any other brunch, even though we all knew differently, especially since my family never got together for a meal unless it was a holiday or some other special occasion.  After we had all been to the buffet at least once, I took a deep breath and told them that I had MS.  They were surprised of course.  I don’t know what they imagined that I might have to say, but I’m pretty sure this had never entered their minds.  I got the expected “Why didn’t you tell us sooner,” but due to the serious nature of the announcement, the guilt trip was cut short with other pertinent questions.  What exactly was MS?  What was the treatment?  What was the prognosis?  I’m sure that there were others that I don’t remember anymore.

I told them what I knew about MS, including that I would be taking Avonex, and that there really was no prognosis except it was a good sign that I had only had sensory symptoms so far.  However with MS, everything can change in a second.  Since all of my symptoms had been sensory to date, this was a good sign.  However, MS is very unpredictable and everything can change in a second.

The only one at the  table with any experience with MS at all was my mom, who had worked with a woman who at age 50 was in a wheelchair and in a nursing home because of MS.  Picturing her daughter this way was something she had never even thought to imagine.  I was young when we knew her, around ten or eleven, so I don’t have a very clear memory for which I am very thankful.

We finished brunch and each went our separate ways after some hugs and promises made to keep everyone updated.  Unfortunately I am not very good at that, especially when I don’t view things as serious.   A few more guilt trips were in my future.