Stress and Marriage

I have read on numerous MS websites that it is unsure if MS really is aggravated by stress, but that some patients think they see a correlation.  I am one of those.  And unfortunately, I have a type A personality, so I am always stressed.  I actually wonder if people who have MS tend to be more anxious and get stressed out more easily.  As long as I can remember, little things stressed me out.  Especially punctuality.  If I am not 5 minutes early to something, I consider myself to be late and totally stress out.  I know this about myself, so to save myself stress, in college, I learned to leave 5 minutes earlier than I knew I needed to.  It really helped to cut out a lot of unnecessary stress.  I still do this when I get to decide when I'm leaving.  And I am very good at having my kids all ready to go out the door 5 minutes before I know we need to leave.  We need to know ourselves and what stresses ourselves out and learn to deal with it.  
My husband is not like me, though.  He doesn't see a problem with walking in 10 minutes late.  Whereas by that point I am about to have a conniption!   So, for instance, most Sunday mornings, the kids and I would sit in the car waiting for my husband to come out so we could get to church.  After 4 and a half years of this, I have noticed in the past few months that he has put forth an effort to move a little faster and be ready to go when I am ready.  This tells me he loves me and cares about what is important to me (like being punctual).
So, yes, being married adds a whole new dimension because now I need to know myself as well as this whole other person who I CANNOT CONTROL.  But as long as you communicate and you are both constantly trying to put the others' needs and wishes above your own, then it won't be so stressful.  This is something I have learned recently. 

Being married is wonderful.  I am never alone.  I know that no matter what happens, I have someone there to protect me, comfort me, advise me, help me.  I always have someone to go to activities with.  I love being married!  It is a lot of work, and can be stressful, and after 4 and a half years, we still don't have it all figured out.  But the happy moments outnumber the stressful ones :)

me and the love of my life

To Have Babies or Not?

It is difficult to think that my children have a slightly higher risk of getting MS as people without a family member with MS.  But it is not guaranteed that they will get MS, and there are things I can do to reduce their chances.  Making sure they get enough Vitamin D, making sure they protect their eyes from the sunlight, and making sure they know how to keep themselves well hydrated and cool.  As a Mormon, I believe that we are all children of Heavenly Father and He has a plan for each of His children.  He wants all of His children to come to earth to gain a physical body and to choose to live righteously in order to come back to Him and live with Him forever.  He gives us each different trials, never more than we can handle, in order to help us grow and learn things that we need to learn in order to achieve this purpose.  So I know that bringing children into this world is always the right choice.  No matter what ailments or trials they will be faced with, they are children of God and they are facing them for a reason.

I also considered my own health risks in the decision to have children.  Luckily, most women do not have relapses while pregnant.  It seems like MS basically goes dormant during pregnancy, although some women do have problems, but it is not common.  However, within the first year after the baby is born, the mom usually has a relapse.  This was true for me.  Eight months after my daughter was born my legs went numb.  And eight months after my son was born my legs went tingly and I had muscle weakness in one eye leading to double vision.  Now, I should have gotten back on a treatment much sooner than I did both times, and these relapses may have been prevented.  Even so, I plan on having more babies!  They are completely worth it.  I may not breastfeed any subsequent babies and instead get back on my MS meds as soon as the baby is born, though, in hopes of preventing another relapse.  We will see when the time comes...

All I know is, the days that I had my babies were the most wonderful days of our lives.  My husband agrees.  He was right there with me every step of the way and says he wouldn't trade those days for anything.  We also feel like any sacrifice is worth having these precious blessings in our family.  They are worth it!  

Moments after our daughter was born

Me and my perfect baby girl

My husband was smitten with her instantly

Moments after our son was born

Daddy and son

 

A Review of Betaseron

From the time I was diagnosed in July 2004 until I got pregnant with my son, I was using Betaseron (interferon beta-1b) to treat my MS.  So I was on it for 7 and a half years, with a year break in there when I was pregnant with my daughter.

It is a subcutaneous injection, meaning it just gets injected into your fat layer, that you do every other day.  It is an immuno-suppressant, suppressing your immune system so that it won't attack your myelin sheath and thus preventing the progression of the disease.  Whenever I came in contact with anyone who was sick I was sure to get it. 

The most common side effects of the drug are flu-like symptoms.  For the first six months or so that I took this drug I felt like I had the flu.  I felt like I had a fever, you know, the groggy, head full of cotton feeling.  And my muscles ached all over.  I remember my Dad coming into my room at night and rubbing my back and legs because I couldn't sleep.  But after the first few months it went away and I never had any side effects after that except for injection-site reactions.    

You inject yourself in one of eight places, rotating to a different area every night. 

I never did the arms, because mine are so skinny that I don't really have much of a fat layer and they just hurt too much.  My legs hurt a lot too, but I didn't want to cut out too many sites, so I just grit my teeth and did my legs anyways.  So I rotated between 6 injection areas.  The sites became bruised and swollen.  So it was a little embarrassing when I went swimming because of the bruises on my thighs.  I even had someone ask me once if I was being abused! 

It was really hard for me to inject myself.  When I lived at home I had my mom do it.  Then I went away to college and I had to do it myself.  After I got married, my husband did it for me.  Luckily, they have this wonderful contraption called the Auto-Injector.

It means that instead of you having to insert the needle into your own skin, you can load the syringe into this gun and push the trigger and it will shoot the needle into you and then push the medicine into you as well.  It was a life saver!  Of course, even with it, I would have it all loaded and aimed and ready and sit there saying to myself, "Okay, Hannah, on three.  One, Two, THREE!... Okay, on three.  One, two, THREE!"  I would do this sometimes for over an hour before I would finally just do it.  I got better at it as time went on, but it still never got easy. 

Betaseron is a Pregnancy Class C drug, meaning they really don't have many studies on whether it affects babies.  But my neurologist at the time that I got pregnant with my daughter said that he had had quite a few patients get pregnant while on it, stay on it through pregnancy, and breastfeed while on it.  So I got off of it as soon as I suspected that I was pregnant, and I did take it while breastfeeding my daughter.  My daughter is perfectly healthy, but everyone needs to use their own judgement when making important decisions about medications during pregnancy and breastfeeding. 

My neurologist told me that Betaseron has a 30% reduced relapse rate.  I averaged a relapse about every 2 years while on Betaseron.  My neurologist did not like that.  So after my son was born he recommended I switch to a different treatment, so I will be doing posts on the new drug, Tecfidera, soon. 

My Day of Diagnosis

For me, it really was practically just a DAY of diagnosis.  I have heard that for many people the diagnosis takes weeks, months, and even years.

It was the summer of 2004, I was 17 years old, about to start my senior year of high school.  My family lived in Japan, but we were spending the summer in Georgia with my grandparents.  I went to the annual Girl's Camp that our church offers for young women aged 12-18.  It was a week in cabins in the mountains of Georgia in July.  It was miserably hot, and I definitely didn't drink enough water.  I had a blast at the camp, doing all the activities and also strengthening my spirituality.  I came home and plopped into bed and apparently didn't wake up for 2 days!  I woke up and my whole body was tingling.  I thought I was just still tired, so I went back to bed and slept for another 12 hours.  I was still tingly when I woke up and eventually my left leg went completely numb.  My mother thought I must have pinched a nerve or something so she took me to a chiropractor who looked me over and ran electricity through me and said that I must be dehydrated.  So for the next couple of days, my mom pumped me full of water.  I drank bottle after bottle of water.  And the numbness spread, until my entire left side (except my head) was completely numb and my muscles were weak and difficult to control.

So early the next morning she took me to an urgent care clinic (remember, we weren't at home so we didn't have a doctor to go to).  We waited for a long time and when we finally got in to the doctor, he looked me over and told us honestly that he had no idea what was wrong with me.  He said he thought the problem was neurological, so he called ahead and got us an appointment that day with a neurologist.  So we drove over to the neurologist's office and as soon as we signed in the receptionist said, "Oh, they're waiting for you, go on in."  The waiting room was full of people, so this was a little nerve-wracking.  The neurologist looked me over and did the (what now is usual to me) poking and prodding and ordered an immediate MRI.  He said he thought it looked like it might be Multiple Sclerosis, but he wouldn't know for sure until he looked at the MRI.  So we went to the Radiology clinic and the same thing happened, they sent us straight in even though there were plenty of people in line ahead of me.  My poor mother was frantic, I could tell, but she hid it well.  I had my first MRI.  It seemed to go on FOREVER.  The neurologist told us that we didn't have to come back for a few hours so they could get the results, so my mom and I went to grab some lunch.  I remember in the car saying, "Mom, what is Multiple Sclerosis?"  And she said, "Don't worry, you don't have Multiple Sclerosis."  My mom is a pharmacist and knows a lot about health issues/medications/etc. so this was reassuring to me. 

We went back to the neurologist and we waited for the results of the MRI.  After what seemed like eternity, the neurologist came in and said, "It looks like it is Multiple Sclerosis."  Just like that, and my world changed.  My mother burst into tears, and I didn't know what to feel.  I had a LOT of emotions running through me all at once.  I had NO IDEA what Multiple Sclerosis was.  The first questions I asked were, "Am I going to die?" "Will I be able to have children?"  and "Will my children have it too?"  This tells you a lot about me.  Even at 17, I knew I wanted to be a momma.

The next couple of weeks consisted of getting a Lumbar Puncture (LP) or Spinal Tap, which came back as inconclusive, so we got a second opinion.  That doctor just looked at my MRI and completely agreed that it was MS.  So then my parents researched the 3 or 4 treatment options that were available at the time, all of which were injections, and settled on Betaseron (Interferon Beta), a shot every other day.

Those were some of the dreariest days of my life, but they shaped me, and led me to turn to the Lord at a young age and develop a personal relationship with my Savior.  I remember that I was praying almost constantly.  In the shower, kneeling by my bed, in my head, almost all the time.  I was going through the stages of grief for sure.  I distinctly remember being angry and yelling at God.  I remember trying to barter with Him.  "Heavenly Father, if you lift this from me I will do anything you ask of me."  But after a while those prayers turned into, "Heavenly Father, thank you for allowing me to still have children.  If this is the trial you think I need to endure in this life, then I will."  So I guess my children helped me get through that time, even though they weren't born yet :) 

Looking back, I see many tender mercies from the Lord in this experience:

• That I was diagnosed so quickly.
• That we were in the USA when I was diagnosed.  I was already confused enough, but to add the language barrier would have made things even scarier. 
• That my mom is a pharmacist and knew all the jargon that the doctors were using and could 'translate' it into 17-year-old jargon.
• That I had my faith and Heavenly Father to turn to.

My Life Goals

For as long as I can remember I have had 3 main life goals.  I have other little goals and dreams and aspirations, of course, but three big life goals:

1. To get a college degree.  Which I did!  I graduated from Brigham Young University with a bachelor's degree in Family and Consumer Science Education in 2010.

Me and my fellow FACS girls

2. To get married to a good LDS (mormon) guy in a temple.  The Church of Jesus Christ of Latter-day Saints has temples throughout the world where we get married, as well as do other sacred ordinances.  If a couple is married and sealed in the temple, they and their offspring are joined for "time and all eternity" rather than just "til death do you part".  I love that I get to be with my husband and my babies FOREVER.

My husband and I were married in the Houston, TX temple

3. To have children and, if possible, be a stay-at-home-mom and raise them to be upstanding, contributing members of society and the Church of Jesus Christ of Latter-day Saints.  This one I am still working on.  I have two absolutely wonderful babies so far, and I hope to have more.  And I am so blessed that my amazing husband supports me in my goal to be a homemaker, so he works hard and we budget scrupulously so that we can afford for me to stay at home and raise our children.

My family this past Christmastime

Of course, it looks like I've got it made when I lay things out like this.  It looks like I've pretty much accomplished everything I really wanted to and I'm going to reach the finish line scot free.

 But I never expected MS.  It makes all three of these goals more difficult to accomplish.  College was very trying at times, especially during relapses.   And when I was dating, I always thought to myself, "Why would anyone marry me?  I'm defective, I'll probably die younger than most, and I'm so expensive with all my medical costs."  But somehow I managed to get my husband to fall so madly in love with me that he married me anyways ;)  And although MS tends to pretty much go dormant during pregnancy, you never know what will happen afterwards, and more than that I just worry about having enough energy to raise children!

But look at how far I've come already, and I'm only 27!  So I will keep fighting and praying and try to enjoy every precious moment I am given to enjoy all that this life has to offer.   

A Little About Me and this Blog

I am a typical Mormon momma who is almost 27, married, and stays home with my 2 kids.  You would think I was totally normal walking down the street, but actually, I have been living with Relapsing-Remitting Multiple Sclerosis (MS) for almost 10 years!  I was diagnosed at age 17, which is pretty young.  The majority of people are diagnosed in their 20's and early 30's.
I am writing this blog to have a place to record my experiences with MS, going through marriage, pregnancy, childbirth, different treatment options, religious experiences as a member of the Church of Jesus Christ of Latter-day Saints (aka Mormon church), cooking, and just dealing with the different symptoms of MS.  Hopefully as I am learning how to reconcile all these things, I can help others living with MS and other chronic health problems to see that you can still be a spouse and parent!