An Unexpected Relapse

Most of you who read my blog know that I have Multiple Sclerosis (MS).  I think it's time that I talked a little about my experience...mainly for my own records.  This is, after all, my online journal :)

About a year ago, I started noticing that one of my eyes (the right, I think) was blurry and was seeing everything a shade more dull than the other eye.  I remember thinking it was like wearing a dirty contact--only I wasn't wearing contacts at all.  I didn't have insurance until February started, so I made an appointment for February 1st, which was only about a week away.

February 1st came and I dropped my kids off with my parents before heading to the eye doctor.  The doctor's assistant performed several tests to try and figure out what was happening (they did the air puff test, and the test where you have to click when you see the dot appear...).  Finally the doctor told me that I had Retrobulbular Optic Neuritis.  He told me that some people get this temporarily and then it goes away and they never know why they had it, but told me it could be a sign of something more serious (like ms) and so I needed to get an MRI to be sure.  He also sent me right over to get steroid infusions (he didn't even want me to go home and feed 8 month old Riley first!) which could take the inflammation in my eye down.

Once at the infusion center, I found out that while I had the medicine in me (I was going to need 6 infusions; 2 per day for 3 days) I would not be able to breastfeed.  That was a problem because Riley was a stubborn baby who, for the last 8 months, had refused every make/model bottle I had tried.  I had recently ordered a Playtex bottle with latex nipples that were supposed to feel more like the real thing, but he still hadn't been interested.  Oh well, I'd figure it out.

That night when I FINALLY got home to Lehi after picking my kids up from Grandma's, I made up a bottle (using frozen breastmilk) and expected Riley to turn it down like he always did.  I was shocked when he drank the entire bottle down without bothering to complain.  That was a miracle to me.  A tender mercy, no question.

After a few weeks, the steroids did their job, and my vision was normal.  Although I could have kept on breastfeeding Riley, I decided to keep giving him the bottle because I was struggling so much with my milk supply and pumping, and I didn't want him to decide again to refuse the bottle!  I was able to get more milk from a former visiting teacher who I remembered telling me had a freezer full of milk in case I ever needed any.  (I thought I would never need it).  I was also scheduled to have an MRI in April.

I thought about canceling the MRI a few times because I seemed fine and our insurance deductible was $2800 (it seemed high at the time).  My mom and Ryan made sure I didn't do anything of the sort.  I went to get my MRI and then had to wait a few weeks to hear what the results were.  When I got the call, I was asked to come into the clinic and told Ryan not to worry about leaving work to come because it was probably nothing.  My parents were out of town (where were they?) so I had to take the kids with me but it was fine because I still thought it was nothing.  Boy was I wrong!

The doctor came into the office and I told him that my husband wanted me to call him to listen in if there was any bad news.  The doctor just told me to look at some photos, and didn't tell me to call Ryan, so I didn't.  He flipped through a bunch of MRI images on his computer and pointed out a bunch of white spots on the brain.  They were "lesions" and I had "Multiple Sclerosis".  I remember that my kids were fighting and being disruptive, and that I didn't feel like I got any good info from the doctor.  He just handed me some information packets to read and told me he wanted to start me on a medicine called "Copaxone".  Then I just took my kids and held it together really well until I got out of the building and got Ryan on the phone.

"You should have come with me"  I told him as I started to sob.  I got the kids in the car and drove home to Lehi where Ryan met me with lunch (chinese) after leaping into the car and driving home like a mad man to be with me.

Since then I have experienced very minor numbness in isolated areas of my body (my left arm, and my left foot).  I felt totally normal and capable of anything!  I began taking daily injections of Copaxone sometime in May, and eventually stopped feeling terrified of the needle.  I can disinfect, poke, and ice my shot and be done in 10 minutes (or less).

I talked with another woman who told me that once she got on Copaxone, she didn't have any relapses for 6 years.  I guess that was what had me thinking I wasn't going to have any myself, but with this disease, each person has unique symptoms in their own time frame.

Monday, January 6 I started noticing some numbness on my left side.  No biggie, I had done that before and it had gone away.  Tuesday was the same.  Wednesday it was worse.  I could tell that it was my entire left side that was numb, and I was also feeling light headed and was stumbling a little bit.  I almost didn't go to preschool in Lehi, but was glad I did, because it took my mind off the problem.  Thursday I woke up and had all the same symptoms but felt the numbness had gotten worse and was also experiencing episodes of vertigo, where the room seemed to spin around me, making me want to hurl.  I quickly realized that I couldn't move my head too quickly or turn it upside down (like when you bend over) without getting dizzy.

Today is Friday, I have been noticing even more how having a numb body can affect things...doing buttons is hard, typing takes forever because my fingers keep touching the wrong buttons and I have to erase constantly, sleeping is very uncomfortable, and doing everyday tasks like dishes, dinner, playing with my kids have become much more difficult.  It's also very hard emotionally, because I don't know what is going to happen or how much worse this will become and I am afraid of not being able to take care of my kids and husband.  The thought starts me crying every time.

I'm trying to have faith.  I know that this is a big part of the reason we are here on earth.  I'm supposed to be challenged, and the challenges will force me to grow and become better.  Logically I know that, but it's so much harder to look at the challenge I've been given and to figure out how I am going to live with it.  It's so much different that the way I've always imagined my life.  I don't want to be disabled.  I don't want to lose the use of my hand!  I don't want to be in a wheelchair!  I want to grow old and play with my grandkids and travel the world with my husband.  I don't want to be a burden on anyone!

So for me this is a huge, unexpected trial.  I hope someday I can say that I'm glad to have experienced it (the way you hear people say in conference sometimes), but it's going to be a long journey from here to there.

Thank you to everyone who has helped me and my family out throughout this year.  Even to those who were willing but didn't have the opportunity.  It's been a blessing to find out how much people are willing to help and it makes me want to cry (in a good way).

I'm glad to have that all out.  But seriously, if you read this entire post, I'm impressed!