RSS is here!!!!

With the help of Donna, from Arranging Shoes, I realized that most of my readers would prefer to subscribe through RSS feeds.  After a few rounds of playing with it, I finally figured out how RSS worked, and  added  it as an option on my left sidebar.  Please subscribe the next time you stop by.

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Pulse steroids, out to California, and back to depression

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

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

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

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

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

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

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

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

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

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

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

Catholicism, me and little E.

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

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

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

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

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

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

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

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

Cheeburger Cheeburger!!

Yesterday was team Next Steps first official fundraiser.  It was held at Cheeburger Cheeburger in Columbia, Maryland.  What a wonderful evening!  I got to see many people I hadn’t seen in awhile and meet many new people who had come out to support the fight against MS.  It was a very moving evening for me.   We managed to raise $217.31 for MS! It was so successful that we are going to do it again at a different Cheeburger Cheeburger location before the walk.  If anybody that was there last night is reading this, Thank you VERY much!!!!

The temporary disillusionment of “Ed World”

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

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

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

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

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