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.

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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.

Time for the professionals

After crying until I could cry no more, I made a decision.  I could not go through that again.  The question was where to go from here.  The only thing I knew to do was to pull out my insurance directory and start researching neurologists.

I was first just going to go through the names and see where they were located, when miracles of miracles, what name should jump out at me from about halfway down the list?  Johns Hopkins Department of Neurology.  I couldn’t believe it but checking a couple of times the name was still there and I knew that this was the only place I would be going.  I called them up, told them my story, and had an appointment in a month with a renowned expert in MS, which for Johns Hopkins is incredibly quick.

During that month, nothing really changed.  I still had the numbness and altered temperature sensation on my right side, but other than that, life went on as usual.  I was just waiting for my appointment.

When the day of  appointment arrived I was both excited and scared.  I knew I was going to the best of the best now, but I still had no idea of what to expect.  The first thing they did was the lumbar puncture, and not only did they give me something to calm my nerves, they did the procedure under an x-ray so they weren’t guessing about where they were sticking me.  I have to say that I don’t even remember it hurting more than a little pinch would.  After that there were two more tests.  For the life of me, I can’t even remember what the first one was.  For the second one, I can’t remember the name, but I do remember them sticking electrodes all over my scalp.  In comparison to my first experience, I would say my lack of memory definitely qualifies this appointment as a success.  Thank you, professionals!!!  Now all I had to do was wait for the results.

Thank goodness Tommy had nothing to do!

As I ended my last post, I stated that the next test I had to have performed was a lumbar puncture.  Most of you reading this have never met me, so I just want everyone to know that I am a WIMP!  And, yes, that word does deserve to be in all capital letters.

Now let me clarify just a little.  I am not whiner, I am just a wimp.  If I were to get hit in the head with a baseball, for example, something I had no control over, I’d say “ouch”  and maybe put some ice on it, but you wouldn’t find me complaining about how much it hurt all day long.  In fact, I get over incidences like that so frequently and quickly that other people will often notice that I have a huge bruise somewhere and ask me what the heck happened?!  My response is usually “what bruise?”  However if it something that I know is coming and I have to sit still and allow someone to do TO me, then I am a huge wimp

So on top of being very concerned about the possibility of ending up with a diagnosis of MS, I was facing a procedure that, to me, was one of the worst things that could happen.  I would not only have to be stuck by a large needle, but I would have to be completely still and vulnerable while it was being inserted into my spine.  I had no idea how I was going to deal with this situation.

Being so nervous, I did not want to spend the night before the procedure by myself, so I spent the night at my friend Tommy’s house.  When I woke up that morning, I just knew that I did not want to go by myself, so I worked up the nerve (I don’t like to show weakness) to ask him if he had plans for the day.  To this day, I could not be more thankful that he quickly said he did not have plans and asked me if I would like for him to go with me.

Once we got to the hospital where the procedure was being done and I was checked in, I had to leave Tommy sitting in the waiting room.  I was taken back to the area where the lumbar puncture was to be performed and told to change into a hospital gown, and that the “doctor,” my neurologist at the time, would be right with me.

He came into the room, explained the procedure, and then it was time to start.  No matter how scared I was, no matter how much of a wimp, I understood the importance of being completely still while having a needle stuck into your spine.  To make a horrible experience brief, I will just say that the “doctor” stuck me five times in the spine, was unsuccessful, and then blamed me because I did not hold still.  The “doctor” left me alone in the room saying that he gave up and there would be another doctor in shortly to complete the procedure.

After about a half hour with no one coming into the room, I finally caught a nurse and asked her when the doctor would be in.  She looked at me a little strangely and said that no doctor was coming.  It turns out that my “doctor” had just abandoned me.

I got dressed, went out to the waiting room, and started the longest period of hysterical crying I had ever done up until that point and have not surpassed to this day.  Tommy allowed me to cry for literally hours on end, made sure I got fed, and took me home to my BooBoo, my cat and first love, where I continued to cry for quite a period of time.  I did survive that day, as we all survive most of our hardest days, but I never saw or spoke to that “doctor” again.

And let’s just say that the next time this procedure was performed, I was pre-medicated.

Hasn’t this happened before?

We are going to skip the next couple of years after my last post.  Why dwell on them?  Nothing of much importance happened during them, at least not in the MS arena, if you don’t count the chronic issues previously mentioned.  I went to work, saved a few lives, dated a few guys, and partied a bit with my friends.

Then my right side started to feel numb and I had odd temperature sensations in my right leg.  My brain started to recall an early instance where everything was different but all too eerily the same.   I decided that this warranted a return trip to the doctor.

I was still with the same Primary Care office, but I refused to see the same doctor that I had seen a couple of years ago.  Five minutes after I had been in the examining room with the new doctor, she looked at me and asked if I had any history of autoimmune disease in my family.  At that point, I couldn’t have even told you what an autoimmune disease was.  She told me that she wanted to rule out Multiple Sclerosis and gave me a referral to a local neurologist.  I made the appointment and was so nervous that I took a friend with me.  (Thank you, Mary!)  The neurologist wanted to rule out Lyme disease and a couple of forms of herpes through blood tests, and then did some kind of test with needles up and down my back.  After those tests came back normal, the next test was a lumbar puncture.  And here I am going to stop because that day deserves a post all of its own.

The first documented, oops, I mean undocumented, episode

I first noticed something when I started to feel an altered sensation or  numbness on my left side from the middle of my back, wrapping around to my belly button and down my left leg to my knee.  It was weird, it was strange, but at first I didn’t worry about it.  I just kept poking at it.  I am not, or at least was not, one that worried too much about my health or health problems.  Up to that point I had never even broken a bone, though that was soon to change.  This new sensation caused me no real discomfort nor any disruption to my daily routine, so as would be typical for me, I chose to ignore it.  Even I, however, could only ignore it for so long.

After two or three weeks I made an appointment with my primary care doctor.  I went in and saw one of the newer doctors and explained how I was feeling and what was going on, and was promptly dismissed with the diagnosis that “I was wearing my pants too tight” and told to come back in two weeks if things hadn’t changed.  Well, indignant and P***** off don’t even begin to describe how I felt at that time.  However I went home and waited out my two weeks.

As it turns out, the symptoms began to recede during that period, so I did not return to the doctor, and did not give it another thought.  The only time it came up again was one day when I was at work and describing the strange episode to my partner, who then happened to mention that something similar had happened to a friend of her’s and it turned out to be MS.  This gave me a slight pause, but only slight.

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

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

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

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

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

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

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

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

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

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

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

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

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

Sincerely, and with heartfelt thanks,

Debbie