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.

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

« Older entries