Tuesday, January 26, 2010

slump.

Ever feel like you're in a slump? I do. I have so many reasons to be happy-I have a loving husband, beautiful children, a super-silly kitty, the list goes on and on. But I'm not happy.

UPDATE: I never finished this post, thus the lack of "content." But I think it is important to save for posterity. I need to be able to look back and see how far I've come. And I need to remember that it's okay to have slumps. Everyone has good days and bad days. So if you're reading this and you feel like you are in a slump, remember that "this too, shall pass."

Saturday, January 9, 2010

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.

Thursday, January 7, 2010

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...

Sunday, January 3, 2010

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.