I don’t want to start over

Yesterday I was so excited to start my 29 Gifts program.  I was committed and determined.  Today I couldn’t wake up.  I slept until 11am and then no matter what I did I could not get rid of the fog that was swirling around in my head.  Usually I have a glass of Diet Coke with Lime and the fog slowly lifts.  This morning the fog just kept hanging on.  I laid in bed for a while watching Bewitched on Hulu and hoping to feel more like joining the world.  My mind was just not having any of it.  I was even missing the first coolish day we’ve had around here in weeks.  Rainy, winding, overcast, sounds like heaven to me right now.  The few times I was up and in the kitchen I kept opening the door and relishing in it.  Unfortunately my, almost 3-year-old, son was not of the same opinion and kept closing it on me.

Eventually I just gave myself permission to lay in bed and not go anywhere or do much of anything.  The only thing about this plan was that I didn’t feel like I was going to be able to give my gift today.  I was too tired to do anything around the house for anyone and we weren’t going to be going out now so I didn’t really see a way around it.  I would have to start again on Sunday.  This was not how I had wanted to do this but I had come to decision that this is just what it had to be.

Then something came to me.  As a blog writer  I always look forward to the few comments I get.  I also must admit that I am very bad at commenting on others’ blog posts.  I’m not really sure why that is but it is one of my short comings.  So today I decided that for my gift I would comment on every blog post that had been posted on twitter from the Carnival of MS Bloggers in the last 24 hours and then I would go through all the blogs that I had linked on my blog and comment on everyone’s last post.  I hoped it would make them all feel as happy as I am when I see a new comment.  As of now I already know of one who it effected.

This wasn’t a physical gift or a financial gift but it was a gift of my time and hopefully a gift of happiness to those I wrote to.  I believe these gifts to be just as important as tangible gifts, sometimes even more so.

Now it’s time for me to try to figure out how to go to sleep tonight.  How ironic, I can’t wake up during the day and then can’t get to sleep at night.  Tomorrow at least I have a wonderful incentive to get up and shake the cobwebs loose.  Cooking club starts here at 10am!  I can’t wait!

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Who is this girl in the mirror?

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

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

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

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

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

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

Pulse steroids, out to California, and back to depression

After little E.’s birth, my neurologist thought that I was at especially high risk for having a relapse in the first six months post delivery.  He thought that I needed to begin treatment as soon after delivery as possible.  However, I wanted to breastfeed little E. as I had done with G.  Avonex, which is the drug I had been using pre-pregnancies, is not considered safe while breastfeeding.  The neurologist decided that pulse steroids would be an acceptable substitute until I was done breastfeeding.  So we compromised with me getting one round of high dose Solumedrol once a month while little E. was given formula for approximately 28 hrs, and I would pump and dump during those hours to keep up my supply.  I had no relapses during that period.  In fact I didn’t have many complaints at all, except for the home care nurses and their generally poor IV skills.

When E. was seven months old, we decided to got to California for almost two months at part of a summer program for Ed’s job.  I spent many hours on the internet trying to find us a vacation rental which would be within our housing allowance, yet had us within in walking distance of the beach.   It wasn’t easy, but I finally found a place.  I was so excited!  It was within two blocks of the beach and a mile from the center of town.  What more could I ask?

We packed everything up, flew to California, the kids were almost perfect by the way, and then there we were in San Diego.  After fighting with car seats for an hour, we drove the twenty minutes to La Jolla, to our temporary home.  La Jolla is a beautiful town with amazing oceans and beaches.  What a summer we were going to have!

The problem with paradise, however, quickly roared it’s ugly head.   Most of the beaches, including every one within walking distance, had steep steps down to from the road, and then rocks that you had to navigate before you got to the sand.   The real issue with this was that I had not fully recovered the strength and balance in my legs, making it impossible for me to take the kids to the beach without help.  My fantasies of walking to the beach each day with the kids were suddenly substituted with the reality of many days stuck inside the apartment with the kids watching way to much T.V.

I joined a mom’s group while I was there, and Ed was nice enough to take the bus to work occasionally so I could have the car and get the kids out of the apartment.  We went to the Zoo, rode a train, got to a few playgrounds, but waited for Ed to even attempt the beach.

After about three weeks there, I started to feel a distinct difference in the amount of trouble I had walking.  I called my neurologist in Maryland, and it tuned out that he was not able to prescribe IV Solumedrol in CA because he did not have a California medical license.  However, after much back and forth with his nurse and a local pharmacist, they were able to figure out a pill dose of solumedrol which he was able to call in.  In the neurologist’s opinion, the symptoms I had were not that severe, so he started me out on a low dose.  It very quickly became apparent that the lower dose was not effective, so we upped the dose, and I stopped breastfeeding E. for good.

It was a scary time because we were in a second story apt., and I was often responsible for getting both children up and down the stairs.  I could barely get my self up and down the stairs.  Luckily, I never fell, and only came close to falling once.  This whole situation sent me into a depression where I found it very hard to motivate myself to get off the couch and do anything.  The kids got introduced to a few PBS kids shows and a lot of the Food Network.

In the last two weeks that we were there, my legs finally began to feel better, and I chanced the stairs and rocks to get down to the beach.  Talk about beautiful.  I felt at such peace there.   For our last week there, we went every night and watched the sun set over the ocean.  Then it was time to leave.  We had gotten to see the zoo, go to Hollywood, visit a few wineries, make two trips to Sea World, and  a few other things, but not with the excitement and enjoyment that I had pictured when we arrived.

When we got back home, I just slipped into an even worse depression.  I could care less about cooking and dinner, which had once been my passion.  I had no real desire to go anywhere, and spent most of my days on the couch spending way to much money shopping for Christmas gifts for my kids.  This is the only thing that made me happy because I wanted them to be happy.  I’ve started anti-depressants again, though we have been through a few different ones and changed the doses a couple of times, and I’m still not sure we’ve got it right.  There are definitely good days and bad days.

Sometime after the first of the year, I decided I was going to start a toy and book blog.  I was actually excited about something for the first time in a while.  I also decided on the spur of the moment one day to sign up for an Instructor’s Course which would allow me to become involved in my previous field again through teaching.  I also found this prospect exciting.  The toy and book blog had barely been named when I decided to create a team to participate in MS Walk:Columbia 2010, that prompted me to start writing this blog.  Since then, this blog and fund raising has taken all of my time.  I hope to get back to the toy and book blog when the MS Walk is operating on its own or is over.  My Instructor class started last Monday, and I came home almost in tears realizing how much I had taken on in such a short time and how much work was involved.  I think a lot of that feeling was brought on because I’d been having days where I felt that my legs were weak and shaky, and I was becoming scared about that, along with my perpetual guilt about not interacting with my babies enough because I always feel so tired.  We won’t even get into what’s been going on with my parents’ move. I’m sure things will work out.  I am smart and determined and have a very supportive husband.  I just need to allocate my time a little better, and maybe adjust what I am doing to help myself sleep a little bit.  I just need a little more energy, and hopefully a change in sleep patterns will allow me that, and to figure out how to allocate my spoons a little better.  I’ll keep you all updated.

Well folks, this is the end of my story about the past.  All future posts will be discussing the present or my hopes, goals, or fears for the future.  Thank you for your interest in my story.

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.

The Beginning….now when was that?

That’s the thing, you see.  I don’t actually know when I first got MS.

When I think back on it, there are all kinds of things that pop into my head and make me wonder if that was the first symptom of MS.  Then I think, well it probably wasn’t that, but what about this?  I have so many doubts, questions, and hypothesis, and yet they prove and explain nothing.  The fact that I couldn’t stay awake all hours like a normal college student and do research and finish papers, was that tiredness actually MS?   That I found myself depressed to the point where my friends were calling it clinical depression, was that actually the MS rearing its head?  The urine incontinence that I would sometimes suffer when being made to run for my job, MS?  Who knows.

The above symptoms (fatigue, depression, and urine incontinence) are all very common symptoms in MS.  The question is, were they symptoms in my case or just part of who I was at the time?  I’ll never know but always wonder.  The fatigue can be explained away by the long hours I was working at very physical job as a paramedic.  The depression, well, I was living by myself and often isolated from friends and activities by my unusual work schedule, not to mention the lack of self-confidence in the dating department.  Plus, there was the fact that I considered myself to be a failure at school, especially after being a fairly strong student until my senior year.  As for the urinary incontinence, many women have weak pelvic floor muscles. (TMI, I know.)  As you can see”The Beginning” will never truly be  known.