miami.

Yesterday we made the long journey to the Miami VA. Boy, was it long. We left home at 6am and didn't get back into town until 6pm. Mr. M was of course, unable to drive, so I had to do all the driving and was completely exhausted. The last time we went, I was allowed to sit with Mr. M, and relax and prepare for the drive home. This time however, they decided that I was not allowed to stay, so I was left to wander the hospital alone. I tried to study, but the cafeteria got too loud when lunchtime rolled around. There were waiting rooms, but the chairs were uncomfortable. So I eventually wandered. At least I got some exercise!

I did visit Mr. M every so often, to see if he needed me to bring him some food or a drink, and just to see how the infusion was going. I may have mentioned before that the second infusion is usually the scariest, because Mr. M can have an allergic reaction to the medication. But things went well. He did have high blood pressure, which concerned the doctor, but it did go down, and they eventually let me stay the last half hour of the infusion. That was a blessing, because I got to sit in a big, squishy recliner and took a nap! After that, I felt much better.

There were some other complications that bugged (the VA always has complications that bug), but other than that things went well. In fact, two good things came out of this visit.

1. We were able to get a Spinal Cord Injury patient parking sticker. Sure this seems trivial, but we were happier than ever to get it. Parking at the Miami VA is a complete nightmare, even if you are handicapped. But not every person who is handicapped has a spinal cord injury, which MS patients are considered to have, so we were eligible for a "special" handicapped parking spot. Hooray! This means no more driving around aimlessly, hoping that someone will leave so that we can get ANY kind of parking spot.

2. Mr. M's new neurologist, who resides at the Miami VA, and who I just LOVE, agreed to help us get Social Security Disability for Mr. M! What a blessing! His grumpy neurologist in Palm Beach, intelligent as she may be, does not have the bedside manner that this woman has. We tried to get a letter from her in the past, and she actually refused. But now we have someone on our side. This is the third attempt, after all. Now we just have to convince the lawyer to take our case. The one we originally found had to refer us to someone else, and they never called us back, so now we are stuck with a nation-wide firm, who hopefully has time for us.

Things are still hard, but every now and then things seem to look up. I know someone on the other side is watching out for us.

on the road again.

Tomorrow we will be travelling to Miami so that Mr. M can get his second dose of Tysabri. Details of the trip to come...

does the journey seem long?

I heard this hymn today and was uplifted.

"Does The Journey Seem Long?"

Does the journey seem long,
The path rugged and steep?
Are there briars and thorns on the way?
Do sharp stones cut your feet
As you struggle to rise
To the heights thru the heat of the day?

Let your heart be not faint
Now the journey’s begun;
There is One who still beckons to you.
So look upward in joy
And take hold of his hand;
He will lead you to heights that are new.

Thank you, Heavenly Father. It was just what I needed.

happy new year.

Happy New Year, 2010.

May this year bring us one step closer to finding a cure for MS.

the blame game.

Man, have we been at each other's throats lately! The kids have been rotten, which never helps, and in the season where you just want to spend money, not having any makes it really hard. Mr. M's bi-polar mania is so out of control. He thinks he needs new clothes, Ithink he doesn't, since he never goes anywhere or does anything anyway. It's frustrating. Mr. M loves to shop, which is cool, but he doesn't know when to stop.

We got into it big-time last night. I was awful. He says I know exactly which buttons to push to make him feel horrible, and he's right. I felt awful, and I deserved to. I know it is not his fault, but I blame him for his problems. I blame him for "ruining my life." He blames me for not understanding. No one wins in this blame game.

It takes so much PATIENCE and UNDERSTANDING to care for someone with MS. Those are two virtues that I am not the best at, but I am working on it. I saw a quote on someone else's blog today that I want to share:

"Everywhere in nature we are taught the lessons of patience and waiting. We want things a long time before we get them, and the fact that we want them a long time makes them all the more precious when they come."
~Joseph F. Smith

One day things will be better.

keep moving forward.

"Meet the Robinsons" is one of my favorite movies. This morning, my girls wanted to watch it, so I sat down with them. We made french toast with pumpkin pie spice instead of cinnamon, and it turned out great! After we filled our bellies, we started the movie. I've seen it before, but this time a phrase stuck out-

"Let go of the past and keep moving forward."

KEEP MOVING FORWARD is the main theme in this film. And I believe in it. We, as caregivers, will have bad days. We will want to give up. We will want to give in. But we must KEEP MOVING FORWARD. So, for today, that is my motto. I am going to play with my children and be happy.

I am going to KEEP MOVING FORWARD.

enjoy yourself.

**NOTE: If you are also a reader of my personal blog, this post is the same as the one on there. I felt it pertained to both this time.**

A few days ago, we was eating at Szechuan Palace, one of our favorites. We were tired and the girls were grumpy, but it was so late that we just wanted to eat something decent and quick (not fast food) for dinner before we went to bed. We happened to be seated in a corner of the restaurant where we have never sat before. In this corner, there was a little sign that said "Enjoy yourself. It is later than you think." At first I thought it was talking about drinking and how the drinkers should hurry up before the bar closed, but as I continued to eat my yummy deliciousness, I kept thinking about that sign. My eyes kept returning to it, reading it over and over again. And I came to the conclusion that it was in fact NOT talking about alcohol. Instead, it was talking about life. MY LIFE.

I have been glum. Since before Thanksgiving, I have been fighting depression. Some days are good, others not so much. Lately it has been hard to fight it. I sit at home and watch Mr. M sleep, day in and day out. I feel hopeless and helpless. Our closet collapsed a few days ago, so there was a whole other mess of things to add to the already covered floor. Our new apartment is just too small for us. But there is nothing we can do. We have gotten rid of most everything that we could. When we finally called maintenance to fix our closet, I was left alone to move EVERYTHING out of the way so that the job could be done. It made me sad. It made me feel overwhelmed. I wanted to just throw it all away. I actually got down on the floor and cried. I begged Mr. M to get up. I felt like a two year old throwing a tantrum. It was ridiculous, I know. The cat came over to see if I was ok, then I got up and started to try and clear out the closet. Mr. M would not get out of bed, and I had to put everything somewhere, so I just piled it all on the bed on top of him. Then I started bagging things up. I was going to throw things away. But just at the last second, when I thought I couldn't take anymore, Mr. M got up and helped me. Maintenance soon came, and I took the girls and left the house. It felt good to get away with just them.

Back to the sign.

Seeing those words made me realize that I don't have forever to be happy. It is later than I think. Time on Earth is short. We know that. It should not be wasted feeling angry or sad. We should find "joy in the journey." This is hard to do. But at least I have recognized that I need to try and find some happiness, even if it is just a smidge, each day. Life is too short to be depressed all the time.

I don't know where that sign came from. Perhaps my great-grandfather put it there (he is known for his "trinkets") or maybe it is something that the restaurant owners found. Either way, I am grateful that it was there to lift me up. Thank you, little sign.