Cheese

Well, we just got back from a trip to the south for the annual family reunion that we call 'family camp' and it was so wonderful.  My grandparents, all my aunts and uncles, all my cousins, and their children all stay in cabins in the mountains of north Georgia for a week.  We play board games, get crafty, go for walks, chat, sing, play croquet, do puzzles, enjoy the beautiful scenery, and eat lots of yummy food.  It is my favorite week of the year!

The whole gang, except for my sister who is serving a mission in CA

Settlers of Catan is a big deal

We learn croquet at an early age

Probably because of my recent MS relapse and the fact that I just weaned my son who is allergic to dairy, I am a little more conscious of what I eat.  And I realized this year at family camp that we eat a LOT of cheese.  I kid you not, I think EVERY meal we ate had cheese in it, breakfast, lunch, and dinner.  I was grateful that I had weaned my son, or I would have had trouble finding things to eat! 

It got me thinking about how I cook for my little family and what ways I need to alter my diet.  There is not very substantial evidence to prove that any of the so-called 'MS Diets' really cure MS, but I think it is probably true that improving my overall health by eating better would help my body.  I have done some research and almost everything I have read about dietary recommendations for those with MS have said to avoid dairy and red meat :(  I had a very difficult time going off of dairy while I nursed my son.  I only did it because I knew that it was the best thing I could do for him and because I could tell myself it was temporary.  Now, you must think that I am ADDICTED to cheese.  But actually, if I eat something that has the option of having no cheese on it, I usually don't have the cheese.  I have never liked American Mexican food because I hate all the cheese.  It's the ice cream and the cream that goes into so many recipes that I would struggle with.  There is dairy in SO many things.  If I went off of dairy for good, I would have a difficult time whenever we go out to eat, which is something I love to do!  I would also never get to eat cream-based soups and sauces, which are some of my favorite foods!  It would be very difficult.  So I am at a crossroads in my life.  Do I want to be around in 30 years for my children and grandchildren?  Or do I want to be able to maintain the way I cook and be able to eat out wherever?  It seems so black and white, but it REALLY would take a LOT of energy to make that big of a change, and I am not sure that I have that kind of energy with MS.

It's a vicious cycle.

Fiercely Independent

I liked how my husband described me as we were having pillow talk last night.  He was saying he understood how hard it must be for me to not be able to drive right now because I'm fiercely independent.  And it's true.  I have never let MS stop me from doing something I want to do.  Even during relapses, I always managed to find ways to cope so that I could still do everything I thought I needed to.

This relapse has been different, because for the first time I have had vision difficulties, and therefore I cannot drive safely.  It has been terribly limiting!  Luckily, I have sweet friends with minivans who come and chauffeur me and my kids around to our routine activities during the week.  But my husband has been doing the grocery shopping, and all other shopping has been put on hold until I can do it myself.  I can't run errands or take my kids to a park on a whim.  

Not being able to see clearly has made me more impatient, because I get exasperated.  For instance, it is frustrating to have my daughter crying because she can't find something, but I cannot see well enough to help her find it, and then because big sister is crying, the baby starts crying too, while I'm scrambling around trying desperately to find whatever my daughter is looking for.  It's exhausting and frustrating to say the least. 

So yes, I would say that my husband nailed it, I am fiercely independent.  I am not sure that this is necessarily a good thing, though.  I tend to hold people to the same standards that I hold myself to.  So when I hear about someone struggling, sometimes I think something along the lines of, "Oh, come one.  Suck it up and deal with it and do what needs to be done."  But I couldn't do that this time myself.  I needed help, and there were so many of my friends who gave of their time and resources willingly.  It was hard for me to ask for and accept help.  This has been a humbling experience for me.  Maybe I can be a little more selfless and give service to others a little more freely from now on. 

Momma Moment

I'm going to have a momma moment here and show you my sweet ones.

My daughter N

My pretty princess

 My baby boy J

Love that one dimple!

We LOVE going on walks together around our neighborhood.  Especially right now because I cannot drive due to MS-related vision problems.  So when I have the energy I pile them in the stroller, although my daughter wants to walk on her own these days, and we walk around the block.  I love these kids.  In the description on the banner of this blog I say that I'm trying to stay sane balancing everything, but really these 2 are what keep me sane.  My life would be so empty and meaningless without them.  I thank the Lord for them everyday.  

My treasures

Summer is here! Oh no.

Those of you with MS know that nothing seems to aggravate us more than HEAT.  And summer means heat, so I really do not like summertime.  Most people can't wait for summer, and of course I used to love that it meant no school, but I find I am just wiped out all summer.
Now I live on the northern California coast, where it is not so bad, but all of my family are still back home in Georgia and Tennessee, where it is HOT!  And we are headed to a family reunion there in a little while and I'm starting to think about how to stay cool, other than just shutting myself up with the air conditioner all summer, haha!  

Things I have found help me keep cool:

• Fans. For some reason, even if it is blowing around warm air, just having air flow helps.  And if you get your face wet, the water feels cool, even if the fan is blowing warm air.  So I have a big fan that comes out every summer and blows the cool night ocean air in every night and then I close the windows during the day and the fan blows the cool air around all day. 
• Get a large-brimmed hat.  It actually works!  I resisted it for a long time thinking I would look old and that having a hat would make me hotter because it would keep my body heat from my head trapped, but if you get a light colored one, it really does work to keep your head cooler, especially if you have dark hair like I do.  And I found a cute one :)
  
  

• Heat zones.  Whenever I feel myself getting hot or fatigued, I have found that running cold water over my feet and hands in the bathtub cools me off right away and invigorates me.  
• Take lukewarm showers.  Hot showers are very invigorating, for about a minute.  Then I start feeling exhausted.  So I generally have it really hot for about a minute to wake me up in the morning and then I turn it lukewarm, almost cool even.  And if at the end of my shower I feel more tired than when I got in, I turn it cold and let my body cool off before getting out. 
• A sun/beach shelter tent.  I haven't gotten one of these yet, but I think it would be a worthwhile investment for a mom with MS.  It offers shade when you're at the beach, park, picnics, pool, wherever.  So the kids can run around in the sun, but I can stay in the shade and keep cool so I have the energy when I need to get up and chase them!  
  
  I would love to hear other ideas on how to keep cool during the summer, so please comment!

First Week of Tecfidera

One week ago today I started Tecfidera (dimethyl fumarate).  When I was diagnosed, I never thought the day would come when I would be able to take a pill to treat my MS! After 9 years of injecting myself every other day, today is a miraculous day.  It is so wonderful to be taking a pill rather than shots!  I would much rather take a pill twice a day than a shot every two days!

I got off of my medication while pregnant, because MS goes dormant during pregnancy.  I breastfed my son for 6 months, so I did not get back on any medication.  We went to my neurologist, and he told me that he did not think that the treatment I had been taking for the past 9 years was working as well as he would like, so he wanted me to choose a different medication.  He suggested 4 options:

1) Tysabri - a monthly infusion, but it can cause PML (a deadly brain infection)

2) Aubagio - a pill that would basically require me to have my tubes tied because it is so bad for fetuses

3) Gilenya - a pill that has been shown to cause heart attacks

4) Tecfidera - a pill that would be coming on the market any day and had no serious side effects!

We looked over the options and immediately went home and started praying and fasting that option 4 would come on the market!  A month and a half later, it did!  Then a few days later, I woke up with sight problems and my legs were almost numb.  So we went through the motions of the IV steroid infusions and steroid pills and an MRI.  And those symptoms are improving almost daily, slowly but surely.  We signed the forms to start the new drug, Tecfidera, and the doctor warned us that all the patients he prescribed it to had to wait at least a month for their insurance to get the drug to them.  We signed the papers, and received the pills a little over a week later!  

For the first week you are on what's called the 'starter dose', which is half the normal dosage.  So today I started the regular dosage.  They say the most common side effects are flushing (redness, itchiness, burning sensation) and GI problems.  I did experienced the flushing.  It was a burning sensation, as though I had a really bad sunburn and my skin turned bright red on my face,neck, and upper arms.  It only happened on 3 of the 7 days, though, about 2 hours after I took the pill in the morning.  And it only lasted for about an hour and then it was gone.

Me during the flushing.  I look like I got sunburned.

 When you get the drug it comes with this pill box so that you don't forget whether you took each dose or not.  I haven't decided whether I want to use it because it is much bigger than the bottle the pills come in and I don't have a ton of extra space in my diaper bag!

The pill box closed

The inside.  A spot for each of the two doses for a week.

And another great thing about it is the manufacturer has made a $10 Copay assistance program!  And I qualified for it!  So we only pay $10 a month for this drug.  AMAZING.  Learn more about it at: http://www.tecfidera.com/tecfidera-ms-support.html#co-pay
 So far, I am liking it.  But like I said, I just started the full dose today, so expect another post in a while to see if the side-effects get worse or not!
 Here is that update.