Dr. please know that of which you speak

NOTE: This post contains a lot of details that are spread out among other posts, but they are condensed here to make a point.

When I was first diagnosed with MS about 12 years ago, I was only 25 years old.  Besides being incredibly shocked and scared, one of my first thoughts was that this might mean that I might no longer be able to have children.  I was being seen by a highly respected neurologist at Johns Hopkins.  When I asked him about having children he told me that there was no reason that it should ever be a problem for me.  Not only was there no real proven genetic connection, as children with a parent having MS only seemed to have less than a 1% greater chance of developing MS than the general population, but the mother seemed to be safe from exacerbations during pregnancy, though there was a higher chance of an exacerbation during the first 6 months after delivery.  The only thing he cautioned me about was to stop taking any DMD (disease modifying drugs) that I might be on prior to trying to get pregnant.  As you can imagine, I was quite relieved to hear that information.

When I was dating Ed and I told him that I had Multiple Sclerosis, I felt very secure in telling him that it would have no effect on our moral or physical desire to have children.   We were married a little under a year later.  I had stopped taking my Avonex a few weeks prior to the wedding on the advice of my neurologist, just in case.  Low and behold I was pregnant with G. less than two weeks after we got married.  I believe I had as typical a pregnancy as one can have, if there actually is a typical pregnancy.  I continued to work at my job as a paramedic on a busy medic unit until I was 33 wks pregnant, and then I went into an office.  I emailed my neurologist towards the end of the pregnancy and he had no concerns.  he just said that he did not advise going back on Avonex while breastfeeding and neither did the drug company.

Approximately eight months later, while still breastfeeding G., I became pregnant with E.  As soon as my body realized that I was pregnant I started to go into a severe exacerbation.  I went from working on the medic unit to almost paralyzed in 8 weeks.  Not only was I having an exacerbation while pregnant, but it was the worst one I had ever had as all my previous attacks were strictly sensory in nature.  When I called my neurologist, I was told that they would not treat me because I was pregnant.  At around 8 weeks pregnant I was blessed to get in to see a Maternal Fetal Medicine Dr., basically just a high risk pregnancy OB, who said that I could be treated and called my neurologist to tell him to start treating me.  I received one round of high dose Solu-Medrol at home which helped my legs slightly but made my arms get worse.  When I finally started losing use of my left arm, I went into the ER.  They admitted me to run extra tests because pregnant women just didn’t have MS attacks.  After nothing else could be found they finally had to admit that it must be the MS.  I required multiple additional steroid treatments during the course of my pregnancy and eventually delivered a healthy baby girl by c-section.

There are so many things wrong with the above scenario that I hardly know where to begin.  First, no doctor should ever guarantee an exacerbation-free pregnancy instead of just a high possibility of one.  When that guarantee did not hold true, refusing to find out how to treat your patient is unacceptable.  My neurologist worked at a large multi-specialty medical facility that also included high risk pregnancy, but he could not pick up a phone and place a consult.  Even after all other tests proved negative, he was still basically unwilling to admit that what was happening was actually happening, and then he defended his decision to turn his back to a patient instead of doing a little research.

At this point you are probably asking yourself why I am rehashing all of this, especially if you have been following my blog from the beginning.  Well yesterday I went to a lunch, sponsored by a drug company that had a neurologist come and speak about the basics of MS and possible therapies.  During his talk somehow the topic of pregnancy came up.  The neurologist stood up in front of that room full of people and told everyone that all women were protected from exacerbations while pregnant. We all know that nothing dealing with MS is a certainty, and the promise of an attack-free pregnancy is just as uncertain as anything else.  If there happens to be a neurologist out there reading this, please think about it the next time a woman asks you about getting pregnant, and if there is a woman reading this thinking about getting pregnant, please know that no matter how many neurologists tell you there is no concern and how many books you read that back them up, that it is just a high probability and not a fact.

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Mommy’s nap time too

Every morning I get up early with Ed, after tossing and turning most of the night, and try to sneak out to the couch so I don’t wake E. in the hope that she will sleep longer.  I fall back asleep on the couch until I hear either G. or E. calling for me.  I get up, get them what they need and then contemplate the day ahead of us.  Sometimes the very thought of the next eight to nine hours until Ed will get home just makes me want to cry.  It’s not because my children are incredibly difficult, though let’s be honest they are one and a half and almost three.  It’s not because I can’t stand being away from Ed for that long. It’s also not because I have so much to do that I hardly know where to begin and can’t imagine getting it done.  It is the simple fact that I do not feel like I have enough energy to anything other than sit here on this very couch.  That means no errands accomplished, no playgroups attended, no housework done, no anything except praying that I can make it until the kids nap time and then that becomes mommy’s nap time too.

Not all days are so bad.  There are days when we do go to playgroups, or the library, or just play by ourselves. There are days when I am extremely productive on the computer, working on my blog and new website (Next Steps 4 MS); I’ll go to a meeting about a fundraiser or to a self-help group. Some days I’m even excited about going shopping or walking around a lake with a friend.  I even occasionally go out with friends and attend my cooking club once a month.  I don’t want to forget about the nights we have people over to play games, which are often the only salvation for my sanity.  The day of the MS Walk:Columbia 2010 should not be overlooked either.  I was able to stay up from 6:30am to almost midnight, during which I walked a 5K and entertained people afterward.  About now I bet you’re thinking to yourself, “That doesn’t sound so bad. What’s she complaining about?”

You might be right too.  I probably shouldn’t be complaining.  There are many people with MS who live with far worse daily fatigue than I even want to ever have to think about.  The plain truth though is that most people with MS live with some level of fatigue not experienced or imagined by the normal, healthy person.  Those “not so bad days” I mentioned in the previous paragraph almost always come at a price.  Sometimes this just means having to cut the activity short or miss the next activity and take a nap.  There are very few days now where at least some amount of napping is not required.  Other times it is complete and utter exhaustion literally to the point of collapse.  I’ve actually had Ed scared a few times.  Now those times are probably my own fault.  I know that I now have limits to how much I can do, but I still manage to push myself far beyond on occasion.  It’s my obsessive/compulsive personality that forces mind over matter until the mind acknowledges that the event it was driving has ended and then it’s all over.

Mommy’s nap time has recently taken a more personal toll too.  My oldest daughter K. recently accused me of doing nothing worthwhile and basically just sitting at the computer all day and making everyone else do the work.  This is actually the watered down version of what went on.  It’s been a long time since I have cried so hard or been so depressed.  To think that any child of mine, especially the one who saw the severe exacerbation while I was pregnant with E. and the milder one in CA. last summer, would ever think that of me is heartbreaking.  Until a little under two and a half years ago, I was a full time paramedic and full time mother using my complete body and mind.  I no longer have that ability and, as much as it has taken a toll on those around me, I guarantee that I feel much worse about my loss of activity than they do, but since I’ve recovered at least 90% physically, all other symptoms are invisible to others.  They no longer understand that I still AM sick and am not able to do what I once could.  I’m scared now about my relationships with my children and what they do and will think of me.  Will they be able to understand?  I guess only time will tell.

Is this really for me?

After MS Walk:Columbia 2010 was over, I felt a little lost.  For months now, all the extra time and attention I had has been going to fund-raising and preparing for the walk.  If I haven’t mentioned it before, I can have a very obsessive/compulsive personality.  Well, I quickly decided that even though the walk was over, my work with the NMSS was far from over.  From things I had and hadn’t noticed happening at the walk to grandiose ideas of how to spread awareness of MS and the NMSS, I was now on a mission.

I contacted the president of my local chapter and was granted a meeting with him.  I then spent the next week and a half pouring over facts and finances for both the Susan G. Komen Foundation and the NMSS .  I went over the website for the NMSS and my local chapter very carefully, trying to learn as much background material as I could.  The end result was a five-page report comparing and contrasting the Susan G. Komen Foundation and the National Multiple Sclerosis Society with ideas/suggestions that I thought could be implemented by the both the National Society and my local chapter.  That meeting might be a story for another time.

While I was exploring my local chapter’s website, I happened upon a section that listed self-help groups in the chapter.  When I was first diagnosed, I wouldn’t even entertain the idea of becoming involved with the NMSS, let alone attend a self-help group.   Back then, I was basically fine, and the thought of confronting what may turn out to be my future petrified me beyond belief.  Participating in the MS Walk was a big step for me, but I wasn’t so sure I was ready to venture into that unknown/scary world of self-help groups.  However, as I was briefly scanning the page, my eye was caught by my local group.  It was described as a mildly affected and supportive partners group.  This gave me pause.  Was “mildly affected and supportive partners” something I could do?

I called one of the ladies in charge of the meeting and talked to her for a little while.  She was very nice and described the format of the meeting to me.  She said that there would be some members who used assistive devices because their disease had progressed while being a part of this group and they did not feel it was right to ask them to leave the group.  I really liked that there was an hour where the spouses/partners/caregivers were separated and given time to talk about the issues that affected them while being part of the life of a person with MS.  I knew that this isn’t the life Ed thought he was getting when he said “I Do”.  Even though he was aware that I had MS, he had never been exposed to even the slightest of symptoms before my exacerbation when I was pregnant with E.  I talked with him and we decided that we would give it a try.

Unfortunately when the night arrived for our first meeting it turned out that we could not logistically (childcare related) find a way for Ed to attend.  We decided that I should go anyway.  I was actually a little excited about it. It turns out that even though I was on time, I was a little early.  There were only two other cars in the parking lot and they had people still sitting in them, obviously waiting.  I decided to call a girlfriend of mine and talk while I was waiting. Another car pulled in and slowly people started getting out of their cars. All of a sudden I wasn’t so sure I wanted to be here anymore. Everyone who got out of their car was using some type of assistive device.  I was describing this to my friend and I told her I wasn’t so sure that I was ready for this; that this sure didn’t look like the mildly affected group I had been told about. She encouraged me to go in anyways.  It appears that this was something many of my friends had been wishing I would do for quite a while now.  At this point she had to run, so I was left sitting is my car feeling a lot alone and a little scared.

I sat there for a few more minutes and just watched as more cars arrived and more people got out.  At this point, not all of them were using assistive devices, but I was still really wary.  I closed my eyes, said a prayer, opened my eyes, turned off the car, and got out.  The walk to the building entrance was a long one, and I’m not talking about distance.  I went inside, found the right room, and sat as much in the corner as I could.  People talked around me and I just listened.  I listened to very friendly, upbeat people talking about MS and about regular everyday events.  When they talked, you could easily forget who were the mildly affected and who were more advanced, especially if you closed your eyes.  Everyone was just there to be accepted for themselves and have a place where people understood where they were coming from. They asked me to introduce myself, and as I did, they all listened attentively and welcomed me warmly.  They had a physical therapist as a guest speaker who took up most of the rest of the meeting.  So I didn’t get to experience a real meeting, but that turned out not to matter.  As the meeting continued, more  mildly affected people did come in.  I guess the mildly affected like to make an entrance.  Maybe I should remember that. 🙂  However I’m not sure in the end that really made a difference.  I had already decided I would be back for the next meeting.

When the meeting wrapped up, people dispersed in their different directions.  I talked with a few people as we walked to our cars.  I will return next month, and my friend won’t feel the need to call me a half hour into the meeting to make sure I’m not still sitting in my car in the parking lot, and the walk from my car to the front door will take no time at all.


O~R~A~N~G~E, O~R~A~N~G~E, O~R~A~N~G~E GOOOOO ORANGE!!!!!

I never was a cheerleader, not really my personality, but in this case I will cheer as long and hard as I need to.  As it happens I really do like orange, and not just the fruit, in fact it is one of my favorite colors.  I have many orange clothes and I own two pair of orange eyeglasses.  So, as you can guess, I was very happy when I realized that the National Multiple Sclerosis Society was starting a campaign to associate their organization with the color orange.  Color and logo recognition are both very strong branding tactics that both for-profit and non-profits have used to great success.  One just has to look at the Susan G. Komen foundation to see an excellent example of how well this strategy can work.

This year the NMSS starting handing out orange shirts to all event participants who raised a minimum amount of money and asking the participants to do what they could to “Paint the Town Orange”.  Many participants took this as a challenge and everything from the orange shirts, pins, headbands, beads, bracelets, earrings, orange hair spray, to even completely dyed bright orange hair was seen.  It was such a wonderful and inspiring start to this new awareness campaign.  Move over Pink, Orange is on the scene!

Look around and see what you can do on a daily basis to help get MS the awareness and recognition it deserves.  See what you have around you that you could use to start getting people to ask questions, and please don’t be afraid or embarrassed to answer those questions! You have nothing to be ashamed of and until the general public is aware of what MS stands for and what Multiple Sclerosis is, we will always be fighting an uphill battle.

I am leaving you now with a ribbon of hope and in recognition of this new campaign from now all my posts will be in orange.  I hope you like the color as much as I do!!!

Next Steps; what a ride, oops walk, it’s been!

I don’t remember the day that I started team Next Steps but I sure do remember the day it came to its culmination, April 24th 2010. Now let’s not get ahead our selves though. There’s a lot to tell about the few months between those two dates.

Next Steps was initially just my husband, friend Kim, and I.  It was my heart child born of many years of knowing that I should be participating in events such as these, but turning my back out of ignorance, fear, and the discomfort I felt in asking people for money.  Looking at my children and thinking of their future  was enough for me to overcome these emotions and Next Steps, the child of my heart, was born.

We had a name, three members, and not a clue in the world where to go from there.  We set our fund-raising goals at the lowest possible except, being the captain, I took a leap of faith and upped mine to $500.  I’ve never fund raised before and I think had it not been for this new contraption which we call the internet I might not have been able to do it this time. Not many of my ex-coworkers, Ed’s coworkers, or our friends really knew much, if anything at all, about my diagnosis and current situation, so I sat down and wrote a letter.  I sent it out to all the people I knew whose email address I had handy and Ed did the same.

Then a miracle began to happen.  Within 5 minutes of sending out that letter I had at least $100 in donations, within 20 minutes  we had at least $300 in donations and that very first night I increased my goal for the first of many times.  Over the next few days the donations kept coming in, however I was also getting letters of sympathy, disbelief, others telling of a similar struggle, and some just simply thanking me for sharing.  It was an outpouring of money, support as people joined our team, and love that just a few days earlier I never would’ve even thought to dream of.

As the weeks went on, we were able to contact more people, and the money continued to come in, I was asked to be the Columbia Walk Ambassador.  I began to believe in the power team Next Steps could have, and I started to feel a bit like my old self for the first time in quite a while.  Our friends had so generously given, and continued to give, but I felt that it was now time to help ourselves a little by arranging some fund-raisers.  We had two fundraisers at Cheeburger Cheeburger, were the recipients of National Cheese Fondue Day (yes it really exists), held a two-day yard sale resulting in sales of over $2100, and an all-day fundraiser at Looney’s Pub, and to finish up a dinner fund-raiser at The Hazelwood Inn.   By the day of the walk, we were the highest earning team, and even though I had continued to raise my goal up to $6,000 with the team goal of $8,000 I had raised over $7000 and our team was over $12,000.  What a feat and a thrill!

This didn’t happen by itself, and it wasn’t done by me alone. In fact, it didn’t come so easily at all points along the way.We had a lot of help from many friends throughout the process, many who even gave up several days to us.  We had our life taken over for approx. two months by a yard sale that lasted for two days and ended up with me collapsing in exhaustion the minute Ed walked through the door from work the next day.  Every fund-raiser caused anxiety as we juggled the kids’ schedules and waited to see what the turnout would be.    There were slow periods when I wondered if we would meet our goal, days my legs felt weak which made me doubt whether I would even be able to participate, and as I was tottering on such an emotional tightrope  I would often find myself tumbling into the depression side of the gulf.  If things didn’t go perfectly, I would often look at myself as a failure, a problem I’ve dealt with for a large portion of my life.

The day of the walk was amazing!  It was full of energy and people wanting to help find a solution to the problem of MS, not to mention all the hair colored orange.  I gave a speech as the Walk Ambassador, and got to see my friends out in full support of both me and such a great cause .  I finished the walk and as a friend commented, was even able to talk the whole way.  The greatest victory of the day however, besides the incredible amount of funds and support raised for the fight against MS, was the moment my Mom finished the course, came up to me, gave me a huge hug with a big smile on her face and yelled “I did it!”

After all the ups and downs, would I do it again?  YES!  In fact we are still raising funds up to the May 31st deadline and then will just continue until the next May 31st. deadline.  Hopefully along the way our team will continue to grow and in love, support, and money raised.

Thank you so much to all of you out there who helped and supported us this year.  Team Next Steps now has its own page on Facebook.  Please feel free to stop by and leave a message or join to be kept up to date of our latest news and happenings!

The only thing I could ask for now, which would be another miracle, would be me somehow raising (my personal fund-raising page) $2191.19 by May 31st, 2010 so I could attend a meeting in Chicago of the top fund-raisers across the country to learn from them and pass that knowledge on to our members and total goal for next year.  We’ve already been granted one miracle though and I don’t want to be greedy.

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.

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.

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!!!!

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