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.


Catholicism, me and little E.

When I went looking to switch OB/GYN practices, I was looking for one whose doctors and office came highly recommended and one that was closer to where I lived.  I found a practice that was both, and I did really like most of the doctors. The medical assistants left a little to be desired, but nothing is ever perfect.

I was also concerned with the hospital that they were associated with, not due to any real reason but, as silly as this sounds, the hospital food.  The hospital where G. was born had an amazing food plan.   You could order just about anything in their cafeteria, basically on your own schedule, and if there was something you liked you could even get more than one.  I actually managed to feed myself and Ed off that plan, and the food was pretty good.  I’d been spoiled, I’ll admit it.  Well it turned out that if I stayed with this practice, the hospital I would be delivering at only offered your typical nasty hospital food and food schedule.  I was incredibly disappointed, but after asking for many opinions regarding the hospital and getting nothing but glowing reports, and the fact that I liked the doctors at the practice, I decided I would just have to send Ed out for food. 🙂   It turns out that the one thing I would have never considered, religious affiliation, ended up being the only thing I should have been concerned with. Unfortunately I had no way of knowing that at the time.

About twelve to fifteen weeks into my pregnancy, while I was at the OB’s and discussing the probable need for a repeat c-section due to my weakness secondary to the MS, a thought suddenly occurred to me. Since the neurologists had come to the conclusion that the pregnancy must be causing this relapse, there was no way that I should ever get pregnant again. I asked the OB if the could do a tubal ligation at the same time they were doing the c-section. The OB said that the two procedures could definitely be done at the same time. They used to do that all the time, however they were no longer allowed to perform the two together. And now for the obvious next question…why? As it turns out the only hospital where they currently had privileges with happened to be Catholic. Catholic hospitals do not allow any procedure that prevents a woman from being able to conceive unless her life is being threatened.

When I explained to the OB that the Neurologists believed that the pregnancy brought on the relapse, and that treatment for that relapse could possibly endanger the fetus, she said that they would take my case to the medical ethics board at the hospital. I said that I would get a letter from my neurologist to help support their case and then they would arrange to have the case heard before the board. After I got the letter from my neurologist, months went by and I didn’t hear anything. I remained optimistic because from my point of view, I could not see any medical professional not seeing the validity of the case. The pregnancy caused the MS relapse, which caused me to be unable to care for the child I already had, and the treatments required to help mitigate the relapse could possibly endanger the baby I was carrying. However, it wasn’t just medical professionals on the ethics board, but also the Bishop of the local Archdiocese. When I was 36 weeks pregnant, the answer was finally handed down, and it was No.

At this point I wasn’t sure what to do. I still had the option of changing practices, but I was so far along, I had found a doctor that I bonded with, and I felt incredibly comfortable with her performing with my c-section. We were still planning on a scheduled c-section because even though I had regained a lot of my strength and mobility, by this time we still weren’t confident that my body could handle going through full labor and then still have any ability to push. I came to the decision that at this point it was more important for me to feel comfortable with my doctor than to deliver at a hospital which would allow the procedure to be performed. We could figure out more permanent birth control later.

When the day came, we went to the hospital, checked in, did all the pre-op stuff, and then waited as they were running a little late. Finally I went into the ER and ended up feeling unbelievably ill from the medications that they had given me. When Ed came in, he said he was worried that I wasn’t going to be OK, I looked so bad. Still through all of this I remember the Dr. calling out that “It’s a Girl” and I replied “Really?” I had been convinced Little E. was going to be a boy. I’ll always remember that moment because that was the start of my life with E. Our relationship had started to be defined from that moment. I won’t lie though, she had some very strange physical characteristics when she was born, not all of which are considered attractive on a girl. Luckily things have evened out nicely.

After they handed little E. to Ed, we noticed that something seemed wrong. They weren’t closing me up as expected, but calling for another doctor, another opinion. It turns out that my uterus was so thin from the first c-section that had I gone into labor naturally, my uterus could have ruptured, and both little E. and I could have died. My OB was trying to get the ethics committee to change their decision based on this new possible endangerment to both my life and the life of any future child I may become pregnant with. I don’t remember all the details here, but Ed says that after about a ten minute wait with me lying open on the operating table, someone finally stuck their head back in the door and said “No.” We were turned down again.

I have never been a fan of the Catholic Church as an institution, and I’ll admit that I disagree with some of their ways of worship and doctrine. However I married a Catholic, would attend Mass with him and his family, and have never judged or had any issue with any individual for being part of the Catholic Church. I still have no issue or problem with any individual Catholic except for the leadership who made the decision on my case. However, my children will not be baptized Catholic, nor will they be in any way raised to be part of the Catholic Church. The Catholic Church proved that they had no concern for my quality of, or actual life, nor that of my children. They would rather enforce their doctrine than protect the life of a mother and any of her future unborn babies. That to me in no way demonstrates God’s love for his children, but an institutionalized blindness when it comes to what is best for those God has already given life to.

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.

Treated, but what if???

I was finally being treated!  I can not even begin to describe to you both the relief and the fear I felt.  The relief was that that something was being done that might actually halt my decline, if not help me regain some mobility.  The fear was that we had waited too long and I had gotten so sick that I would not be able to recover fully from this episode, like I had from all the previous relapses.  Where would I eventually end up?

At this point, I was incredibly mad at my neurologist and his nurse.  They are part of one of the best MS programs in the country, and are associated with an entire hospital of specialists in other fields of medicine.   So why did it take so many strokes of luck to get me treated?  It should have taken just one simple phone call from my neurologist to a high-risk OB specialist in the same hospital to ask about my case.  If I had not gone to see my high-risk OB so early, and had not followed up on her offhand comment , how much longer would this have continued?  To this day, nearly 2 years later, whenever I think about it I can almost feel my muscles tensing and my blood pressure rising.  Talk about someone dropping the ball.

With the first round of Sulomedrol I began to feel a little more strength in my legs almost immediately.  However, the numbness in my right arm actually got worse.  It felt like something was encircling it and squeezing beyond what was possible.  I relayed both the good and the bad to my neurologist, and he had no explanation for the arm issue.  He did make sure that I got an appointment with him in about a week.

Unfortunately, several days before the appointment, I started to get some tingling and altered sensation in my left hand.  I told Ed that I wanted to go to the ER.  My left arm was the only extremity I could still completely use, and I was petrified that I would lose use of it by the time my appointment came around.  We asked my Mom to babysit and went to Johns Hopkins ER at 4am Saturday, hoping to avoid a long wait.   However, it took over 6 hours, in a slow ER, before we were seen!  This was mostly due to the incompetence of the admitting personnel.

Once back in the treatment area, they did the normal blood draw, blood pressure, etc.  Then we just waited for the on-call neurologist to come see us.   It turns out that she showed up in the ER just as I was exiting the restroom and slowly limping along with Ed supporting me.  She said she knew immediately whom she had been called to see.

After her examination, she said that she wanted to admit me.  She didn’t want to admit me for the MS, but because she was having an incredibly hard time believing that this was all caused by the MS and wanted to rule out some possible trauma causes.  Her disbelief came from the fact that women are supposed to be protected from MS during pregnancy.  Most women with MS feel the best they’ve ever felt while they are pregnant.  I also hadn’t had any problems with my first pregnancy.  In fact, I worked on a paramedic unit until I was 33 weeks pregnant.

After several tests, everything that could be ruled out as a possible cause was in fact ruled out.  The only remaining conclusion that the many doctors could come to was that the cause had to be the MS.  Even while saying this, they were still scratching their heads.  I was prescribed a five day course of high dose Solumedrol, which caused the same increased issues with my right arm again.  All they could say was, “Well it’s NOT supposed to do that”.  There was no more discussion of that issue.

I was told I could go home after two days, but I asked to stay for a third.  I was scared to go home.  People were paying attention to me, listening to me, and treating me here.  If I went home, I was afraid that I would be abandoned again.  I did go home after 3 days, and saw my neurologist about 2 months later for a follow up appointment.  By that time I had had significant recovery.  In between, I had one more 3 day course of high dose Solumedrol because I could feel my walking getting worse again instead of continuing to improve.  He said that I was improved enough that he saw no reason to see me again until either (1) I had another relapse or (2) a year had passed and it was time for my annual check-up.  He could not, however, tell me what percentage of recovery I would actually obtain.  It was a wait-and-see game.  I will always wonder if they hadn’t waited so long to treat me if this would have even been an issue.

I had now been off work for 6 months, had used up most of my leave, and had no guarantee of what my future would hold.  After numerous discussions with the Lt. in our risk management office, I decided that, after 15 and a half years at a job I had loved dearly, my only real course of action was to ask the Medical Review Board to retire me on a non service related medical disability.  They agreed without any hesitation and 3 weeks later it was all over.  Uniforms had been turned in, I’d been signed out by every office in the Department, and had filled out all the paperwork needed by pensions and benefits.  It was a very surreal experience.  For 15 and a half years, I had been a paramedic.  That was who I was, how I identified myself, and now, that me was gone.  Who was the new me to be?  I decided to keep up my certification for awhile in case I wanted to do something with it later, like work in an ER or teach.  I still have dreams that I am on a unit, in the firehouse, or running a call.

Looking back on this whole scenario, the one thing that makes me feel incredibly lucky is that the symptoms didn’t start until a few days before my fifteenth anniversary with the department, so I was considered fully vested.  I walked away with a 50% pension and full medical insurance.  I know that the majority of MS patients are not so lucky.

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.

And “Ed World” slowly begins to get a crack

Some babies sleep all the time and love their bouncer.  G. was NOT one of those babies!  I would fondly refer to him as my “high maintenance little man”.  He would refuse to be put down; only sleep on me; refuse to go to anyone other his daddy, big sis, or me; and often insisted that we stand and hold him instead of sit and hold him.  I think he was older than four months old before both Ed and I got to sit down to eat a meal at the same time, sans baby.

By time G. was six months, I had decided that I wanted another baby, but there was NO way that I was going to wait until he was easier and then start all over again.  When I was done with this stage, I wanted to be DONE!  Anyway, it’s not like I was a Spring chick and I definitely wasn’t getting any younger.  We decided to start trying for baby#2.

About 2 1/2 months later, I ended my shift on the Paramedic unit at 7am, rolled up my sleeping bag, put it in my locker, probably forgot and left my gear on the unit, and left the fire station bound for vacation at the beach.  I was to return to duty in a week and a half, but as it turns out that was not meant to be.

The second day at the beach, I began to feel as if I had to pull myself up the stairs in the condo we had rented.  I worked myself up to being able to mention my concerns to Ed, but as he could not see me having any problems, he blew me off.

The next morning I went out to get donuts from The Fractured Prune.(This little aside is not MS related, but I must say that some things just restore your faith on the kindness of strangers, and this trip was one of them.   When I got to the store, I went in, got my free sample, YUM, and picked out my dozen donuts.  Only then did I notice the cash only sign.  Not only did I not have any cash on me, but I also hadn’t brought my cell phone to call Ed and tell him to bring me cash.  As I told the store keeper that I would have to come back, she told me to just take them and come back and pay her later.  Who does that in today’s day and age?  I thanked her profusely and made sure to come back as soon as we could.  I hope this aside wasn’t to long for you, but I think we all need a feel good story every now and then.) Once I got back to our building and was on my way back up the elevator, I suddenly felt an  urgent need to pee.  Funny, I hadn’t felt like I needed to go to the bathroom a minute ago.  Well I started to do the well known “PeePee dance,” but it was not to be.  I opened the condo door, threw the donuts on the table, opened the bathroom door, and I lost it.  Somehow I managed to escape without anyone noticing what happened, but I was starting to get scared.  I sneaked off to the drug store and bought some Depends, not something I ever thought I would be doing at age 34, and refused to go anywhere that would leave me out of sight of a bathroom.  This sudden urgency was not a one time thing.

Meanwhile, I started to feel like I was limping and dragging my right foot, but I was the only one who could tell.  It just kept getting worse, and two days later, I told Ed that we needed to find internet access so I could contact my neurologist.  Sitting in a local McDonalds, I called the neurologist’s secretary.  She told me that there was nothing they could do for me there, and that I would have to wait about FOUR MONTHS for an appointment.  Since I had not been into the office in four years, they were planning to treat me as a new patient, essentially penalizing me for not having relapses.  After arguing with her for a while, she told me to call her when we got back in the area.

I then told Ed that I should call work and tell them I wouldn’t be in for my next shift.  He looked up in complete surprise and said “Is it that bad”.  I said “Yes it’s that bad! Why do you think I’m doing all this?”.  He truly had no clue what was really going on.  I guess that’s part of the unfairness of MS, huh?  It’s a silent disease that only the sufferer can hear or truly know.

The next day while shopping, my walking got bad enough that I said I was done.  My family could finally see the limp, and I know longer felt safe driving a car.  I, who would never go to the ER unless I was the delivering paramedic, or I had an open, compound, displaced fracture of the wrist without a palpable pulse, decided it was time to go to an ER.  We found the closest hospital, and off we went.  The ER was almost empty, so we were seen fairly quickly.  In triage, I explained my symptoms and history, and also mentioned that I might be pregnant since we had been trying.  They moved me to a room and started giving me a dose of steroids.  Then the doctor returned to tell me that indeed I was pregnant.  What should have been some of the happiest words I could have heard were about to turn my life into a nightmare.  That’s a story for next time.

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.

One protective bubble with a side of depression, please

After having told my family that I had MS, I went back into my happy little bubble called denial.   The only time my bubble would magically vanish was when I drank.  On those occasions, not only would I drown myself in my adult beverage of choice, but I would also languish in self-pity, picturing the worst case scenario for my future.    At age 27, I would wallow in the belief that life had been taken from me when I had just begun to live.  When I woke up the next morning, the bubble was miraculously back in place and I would go about whatever I had planned for the day, be it work, shopping, or a lazy day on the couch watching chick flicks and old movies.

This was how life continued for me for about another year and a half, with two exceptions. The first exception were the Avonex shots which I had to self administer once a week.  This I did with uneven regularity.  Sometimes I would be very conscientious about it and other times I’d get lackadaisical and forget to order for a month or more.  The second exception was a depression I was falling into that I refused to acknowledge.  You remember my impenetrable bubble, right?  I wouldn’t acknowledge it because to me it was embarrassing.  At that point in my life, I believed that only crazy people got depressed to the point that they needed a pill to help them.

Then one day I was just so beyond myself, that I called up my neurologist and said “MS can cause depression, right?”  His response changed my life.  He said “Yes, in fact one of the first things I usually do is ask patients about depression and get them on an anti-depressant”.  I don’t remember if he asked me at our first meeting, but if he did, I am 100% sure I would have denied it.  His response  freed me from the pressure and embarrassment I was feeling over the depression.  I wasn’t crazy; it was a typical side effect of MS, which could and would be treated like any other side effect .  In this case the appropriate treatment for this side effect was a little pill called Zoloft.  Once again my bubble was secure, warm, and fuzzy.  After about 4 months I took myself off the Zoloft without any more problems.  My body had been asking for help;  I just had to learn to listen.

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.

The phone rang. Oh why did I answer?

I can’t remember how many days after  my appointment at Johns Hopkins it was when I got the phone call, or where I was, but I do remember the jist of the call.  I had MS.  The neurologist was very kind and went over everything. And then he reexplained everything.

Was he positive I had MS?

Apparently there are three classifications when attempting to diagnose someone with MS: possible, probable, and definite.  Wasn’t there a chance I was in the possible or probable categories?  The neurologist was calm and reassuring, but the answer was  definite.

OK, OK, I have MS.  Now what kind do I have?  There are 4 different subtypes: Relapsing Remitting, Secondary Progressive, Progressive Relapsing, and Primary Progressive.  This is where the “good” news came, if you could call any of it good.  I had the relapsing remitting type, which means that I would have relapses/episodes, but should recover fully after each event.  The other piece of good news was that since all of my symptoms so far had been sensory, it was possible that I could continue that way for the rest of my life.

So as I was processing the fact the I definitely had relapsing/remitting MS, a lot of other questions started popping up into my head.  What was the treatment?  Could I have kids?  Would I pass it on to the kids?  Were there things I couldn’t do or eat?  The neurologist very patiently answered all of my questions.

For treatment, there was a choice of 3 types of injectables, 2 daily ones and one that was weekly. I chose the weekly one, Avonex, because it was only once a week and I thought it fit into my lifestyle better.  I didn’t want to be taking shots at work.  However this still  meant that I would have to give myself a shot.  Do you happen to remember the whole wimp thing from a few posts back?  I was not very happy.

He also said that I could have kids, and there was no chance of me passing the MS on to them as far as they knew.  The only physical limitations involved were the ones that my body dictated on any given day.   No change in diet was suggested.  Throughout the discussion, he kept reminding me that MS is an unpredictable disease, and anything could change at any time.   After we got off the phone, I just sat there in a fog for quite awhile.  What to do now?

I called a few friends, and swore them to secrecy.  I was embarrassed, without any basis for the feeling, other than the fact that I have a difficult time allowing anyone to know of any weaknesses I might have.

Then I went to the bookstore.  I can be quite the reader when I have time.  I came home with about five books, and I don’t think I’ve read more than a few pages of any of them.  They scared me.  Most of them are full of the worst case scenarios, and to me at that time any type of disability would have been considered a worse case scenario.  I was a paramedic that worked on a unit in the streets.  I needed my body at full functionality.  I loved being a paramedic and I couldn’t picture myself doing anything else.  I’d been a paramedic since I was 20 years old and I was an EMT for a few years before that.  It was all I knew.  Being a paramedic was who I was.  I went from reading, to isolating myself and crying again. Self pity took over.  Who would want to date or marry me now?  How could I ask anyone to take on such a responsibility?

Eventually, my solution was to ignore the fact that I had MS, except for the weekly intramuscular shots I had to give myself.  However, before I could totally enter into my own little protective bubble, there was one thing I had to do.