Trust

After the news yesterday, there was a huge weight on my heart.  I was so touched by the outpouring of love I felt from loved ones near and far.  That love is what kept me afloat.  I felt like I was holding on by my fingertips to hope, and as I read people's comments on my blog or facebook or texts on my phone it was like angels were lifting me up.  So thank you.  It is amazing what just an "I love you" can do.
I was still worried and have been in a never-ending conversation with my God I feel like since yesterday.  My hubby finally told me I should call the doctor back and voice all my worries and ask more questions.  I'm glad I listened, because she was able to soothe my mind.  As I spoke with my neurologist, I was able to see that she was trying to balance my risk of getting PML (the deadly brain infection) with my risk of having an MS relapse.  She also assured me that if she thought I would get PML, she would take me off of the Tecfidera altogether. So I am at a much greater risk of having an MS relapse than getting PML, and in this case that is saying a lot, haha!
It is difficult to put my health in the hands of someone I hardly know, much less feel I can completely trust with my life.  But I can trust my Heavenly Father, and I feel like He put this doctor in my life right now to ease my mind and help me through this possible transition. 

Fear

The past two days have been an emotional roller coaster!  Yesterday I had an appointment with a new neurologist at the office I have been going to where I did not like my neuro.  I was delighted to find that this neuro actually specialized in MS! (Why they didn't assign me to her in the first place is beyond me.)  She also has very good people skills (a rare find in neurologists) and is good at explaining things, and has children just like I do.  She seems like the perfect fit!  I am ecstatic.
THEN.  Today I get a call from her with the results of the blood work they did at yesterday's appointment.  My lymphocyte count is WAY below where it should be, which puts me at risk of developing PML (a deadly brain infection) while taking Tecfidera (the drug I'm on right now).  Woah.  Fear sets in.  She wants me to go down from two doses of Tecfidera a day to one for the next month and see whether my lymphocyte count goes back up.  This will put me at a higher risk for an MS relapse, but lower my risk for PML.
I am terrified.  What if I have PML already?  The symptoms are clumsiness (I am already that), progressive weakness, personality changes.  Those are such hard things to measure...  I will get an MRI in a couple of weeks that will see if I already have it, until then I just have to wait and pray.  I hug my babies.  I can't imagine what would happen to them if I were to leave them already.  But I can't let myself go down that thought path or I will drown in fear.  So I force a smile and I'm going to go wash the dishes now.  

Breastfeeding and Meds

This week is going to be a very difficult time for me emotionally.  Tomorrow I have to get back on my MS meds.  Tecfidera cannot be taken while pregnant, so I got off of it when I got pregnant with my sweet #3.  Then she was born and I wanted to breastfeed for 3 months while I pumped enough breast milk to get her 6 months of being fed exclusively breast milk.  But we moved and I had to find a new neurologist, so I could not get a new prescription for Tecfidera until now.  Baby E is 5 months old now.  The longer I stay off my meds the more likely I will be to have a relapse.  I remember the relapse I had after #2 was born... it was awful.  I couldn't feel my legs and I couldn't see very well.  So I couldn't drive and it was difficult to complete my responsibilities as a mom of two, much less 3.
I definitely don't want that to happen again. 
But I absolutely treasure nursing.  I don't want to lose that bond.  I feel like I am being selfish to take away breast milk from my baby, but at the same time I know that she needs a strong healthy momma for the next 40 years, and I need to be on my meds for her to have that.  So I will cry as I hold the bottle to her lips and tell her I love her and that is why I can no longer give her my breast.

  

Having a Mom with MS

I have a dear friend whose mother was diagnosed with MS while she was still a teenager living at home.  As a mom with MS, I was curious to know what my own children might feel and think throughout our life together, so I asked her if she wouldn't mind sharing about her mom's disease and being raised by a mom with MS.  She generously shared her thoughts and feelings.  I appreciate the honesty and openness portrayed in her words.  She was 14 when her mother, then 45, was diagnosed with MS.  Here is her story:


My mom was diagnosed with Multiple Sclerosis around Christmas of 1997. She had probably gotten the diagnoses a few weeks before, but I remember she and my dad made the big “announcement” about it while my grandparents were there for Christmas. When they first told us, I was in shock and terrified. The only person I had known who had MS was a man who was very disabled and close to death’s door. I calmed down quite a bit after they told me that MS affected everyone in a different way and that I couldn’t compare my mom’s disease to anyone else’s.

Over the years my mom’s MS became more and more a part of everyday life. And since it progressed somewhat slowly and it was there every day, it just became life. I didn’t question it. When I was living at home, it didn’t affect me much other than we always kept the house at a cool 72 degrees and we went on fewer family vacations, and neither of those things bothered me all that much.

I am a worrying optimist so in general, if things seem to be going well, I see things positively. For several years, MS minimally affected my mom’s mobility and balance. She had numbness in her left hand, she walked with a cane or holding my dad’s hand, had trouble climbing stairs, and wilted in the hot North Carolina summers. But she seemed happy and, for the most part, was able to take care of herself so I didn’t think too much of it. It was always there and so just a part of my normal life.

I always felt really proud of my mom and proud to be her daughter. My mom went through some hard times and she always came through them with a smile on her face. It didn’t matter that my mom was “disabled.” She was kind, thoughtful, generous, and the best listener I’ve ever met. She was my best friend and I wanted everyone to meet her and know how amazing she was.

Things didn’t get hard for me until around the time I got married. I was away at school for about a year and then lived far away from my parents for the next four years. Each time I saw my mom--which was about once a year--her physical condition had worsened. We talked on the phone or chatted on-line almost everyday, but I didn’t see her every day. MS became less and less an active part of my everyday life so it became more difficult for me emotionally each time I saw her.

One time in particular stood out to me. We had come home from Korea for a two week visit. My mom had just gotten her motorized wheel chair. I watched her eat from across the dinner table and I was shocked by how much muscle mass she had lost in her left arm! It was just skin and bones. It was a terrible reminder of her disease and that it really was progressing. I couldn’t pretend it wasn’t there.

The last few years of my mom’s life were really difficult for me. She began to lose her mentality and for a while treated me really badly. I don’t blame her at all, but it was at that point that I began to distance myself emotionally. I still went through the motions of loving my mom and taking care of her. She was still my mom after all, but most of the time, it wasn’t really her anymore. I don’t regret being emotionally disconnected; I think it saved my sanity. I just hope that it didn’t hurt her in any way.

We had been preparing for my mom’s passing for several months before she died. We weren’t wishing for her death, but we also didn’t want her to continue in the poor quality of life she was living any longer than she had to. I had assumed that I had done all my grieving; she was already mentally gone. I was worried that everyone around me would think I was a psychopath for not being sad about my own mother’s death, but after the fact, I realized that her death wasn’t the thing to grieve. The thing to grieve was the full life lost to Multiple Sclerosis, the adult mother-daughter relationship, the chance for my children to have her as a grandma. She would have been awesome at all of it.

My friend's mother passed away at age 59.  But it is obvious that she was a strong woman and a great mother.  As a mom with MS, I know that it is challenging.  And it is true that MS affects everyone differently, so my own life will likely be very different from that of my friend's mother.  But I did glean a few tidbits from this that I think I can apply to my own mothering experience.
For one, It is encouraging to know that because my children will know nothing other than their mom having MS, they will likely not be too affected by it while they are living at home.  They may notice that mom cannot take them out to the park in the middle of the summer, and that I have periods of time where I cannot walk or write or drive.
I had never thought about how it might affect them once they were out of the house.  I will have to make an extra effort to skype with my children and let them see me often so as my disease progresses they will not be so shocked.
I also think I should write letters for my children to read as my mind goes (which it frequently does with MS as you age), to remind them that even though my brain may forget certain things, my heart never will.
And I need to write letters to my future grandchildren as well.  I hope that I will live to meet them and get to be an involved granny, but realistically, it may not happen.  So I should prepare for this real possibility.

I am grateful that my friend shared her experience of having a mom with MS.  My disease in no way defines me as a person, but it is a big part of me and I do need to accept it and let it change me.  I recognize that I may need to live differently than others around me in order to live the fullest life I can for me and my family.       

2014 Goals for ME

The other day I was teaching a lesson to the young women in our congregation about how they are daughters of God and they have great potential.  I told them that they need to set goals for their life and think about what they want to accomplish in their life.
Do they want to get a college degree?
Do they want to get married?
Do they want to have children?
Are there other things they want to accomplish?
Like..............
I wanted to give them examples of other things that they could accomplish and other things that I want to accomplish in my life.  But none came into my head.

For the past few years when New Year's rolls around we stay up til midnight and drink sparkling cider and celebrate, but I have been neglecting the goal setting aspect of it all.  I have had this nagging feeling in the back of my mind for a while that I need to start doing things that I enjoy and learn some new things, just be productive again.  I know that raising children is productive and I devote everything to them, but I'm not sure that is the right thing.  I want my children to see that their mother accomplishes things, likes to learn new things, and has personal goals and interests beyond them.

So.  Here are my PERSONAL goals for 2014.  I am going to start small.

1. Practice the piano for at least 10 minutes every weekday.
2. Make something for my 2 new nieces/nephews coming this summer!
3. Learn how to crochet.
4. Read at least one book a month.
5. Have someone new over for dinner once a month.

There, now you can all hold me accountable :)

Attitude of Gratitude

It is November!  I love this month.  It is a whole month for Americans to focus on the good things they have in their lives.  We have a few traditions that I will talk more about in other posts, but a good friend of mine posted this on her blog and I want to pass it on.

This was very difficult to do, because there are numerous people who help me everyday, and so many people I cherish in my heart.  This was a good activity to help me look at the things I am grateful for about myself.  I often think of other people I am grateful for and things I have that I am grateful for, but I rarely think about my body or my own talents that I am grateful for.

Having an attitude of gratitude makes a huge difference in my life.  I am happiest when I take time in my hectic day to focus on what is going right.  It's so easy to just focus on everything that is going wrong in our lives.  I am trying to develop an attitude of gratitude that I can keep all year round, so that I can be happy and more positive.

Now it's your turn. Head to Second Chance to Dream and download your gratitude sheet. Then either print it off and fill it in (then scan it so you can post it). Or, I opened the picture in Microsoft Publisher (you could do Power Point too) then added a text box for each separate shape. Once I was finished, I saved it as a jpeg.

 

Worthwhile Sacrifices

I was standing in front of my closet, trying to figure out what to wear to church, like I do every Sunday.  As I was rifling through the over-crowded 3-foot-wide closet that holds both my and my husband's clothes, I spotted my old Chinese dress that was tailor made for me when I lived in Nepal as a 13 year old.  I wore it to a masquerade dance my freshman year of college, and it fit me then, so I thought I would see if it still fit... it did!  Maybe a tad more snug in the chest as I have had 2 babies since I last wore it, but it really did still fit nicely.  The only problem was, the only time I would feel comfortable wearing it would be on Halloween. 

As I thought about this, I looked at the rest of the clothes hanging in my closet and realized that most of them were bought my freshman year of college, when I decided I needed a new wardrobe.  The difference is that I could afford a new wardrobe then, I can't now.

I dress very stylishly, if it were a decade ago.  I manage to get a couple of new pieces of clothing every year for Christmas, which I save to wear on occasions when I really want to feel stylish.  I own one pair of skinny jeans.  I actually have great style, although looking at me you would have no idea, I just can't afford to dress the way that I want to.  Why do adult styles have to change so frequently?  It sure makes it hard for me to look good.  

This is one of the sacrifices I have made to live the life I want to.  I want to have children.  I want to stay at home and watch them grow.  I want to be the one who sees all their firsts, rather than hearing about them from a nanny or daycare.  I want to teach them and raise them.  But in order to do this, there are sacrifices that have to be made.  My husband makes a good salary but, because we live in expensive California, it barely covers rent, utilities, food, and healthcare.  I work from home to supplement this income.  We try to save as much money as we can in order to afford clothing for the constantly growing children.  But that means that if I find a hole in a pair of pants I patch it or cut off the legs and turn them into shorts so I can wear them for a few more years.  If I find a hole in a shirt, I wear it anyways, as long as it's not in an indecent place ;)  I want to buy some cute, colorful jewelry to go with my few cute outfits, but if it's a choice between a cute bracelet or some shoes that actually fit my daughter and don't leave her with blisters, I know the shoes are more important.

This is a big sacrifice for me.  Some of you may be thinking, "Wow, she is shallow, to care so much about her looks."  Well, maybe I am.  But at least I am not so shallow that I sacrifice my children's needs for my own wants.  We all make sacrifices for our children.  This is one of mine.  But is it worthwhile?  YES.  I have two little creatures who absolutely adore me, no matter how I dress.

So I look through my out-of-date wardrobe, throw on one of my two maxi skirts and a sweater I got for Christmas three years ago, and go to church a happy woman.