Tuesday, October 7, 2008

Happy belated and infusion paradise

Jiminey Crickets! As I was driving home from work this morning I realized that it is now the month of October (doh!). I also realized that I had not wished one of my oldest friends, er perhaps I should say one of the friends that I have had the longest, a happy birthday a few days ago. So here it is BJM, a belated birthday wish from your loser friend who was too busy wallowing in her own misery to think about someone else.

I took today off as I was dizzy this morning and tired out after Tysabri day. Plus, I was panicking last night and cried again about work, after not crying for a few days. I know I "look" okay to everyone else but inside I feel like it's a freeway backed up in California at rush hour. My thoughts are sometimes racing each other for an open spot and other times they're non-existent.

The Tysabri thing was a breeze. The worst part was waiting an hour for the doctor himself to come in and introduce himself before the infusion started. The place I go to is a palace. It's an infusion paradise. It has a chandelier in the waiting room. It is decorated as if it's a new showcase home that someone is trying to entice you to buy. There is wainscoting for crying out loud.

You get infused in your own little private suite. They have these funky chairs that are better than recliners but hard to climb in when you're five feet tall and about the same width. The doctor himself got me in the hand on the first stick. I could watch my own TV and or bring a DVD to watch if I so desired. They have remotes and the sound comes out by the back of your chair near your ears.

They have a coffee "bar" with coffee (duh), hot chocolate, and juice. I think there were some cookies or crackers there too. Nice big bathrooms if you must drag your IV pole with you and relieve yourself before the infusion is over.

Two nurses' stations to take care of what I think are about 16 suites. Lots of nurses always walking around with their timers checking on people. I was in suite number 7. Must be my lucky day, huh?

There is a real drape type thing to close off your suite for the most part. You get a pillow and a blanket, if you want one. You have a call button just like if you were in the hospital. People are constantly monitoring everyone in there.

The infusions are not only for Tysabri. A teenager was there for some blood/iron transfusion. The guy next to me was getting his IV Solumedrol and unfortunately having all sorts of problems while that was happening. The nurses never acted like he was an imposition. There were children there and older people there hooked up to IVs. The nurses called the doctor over from the other side of his building whenever he was needed and he came.

The building itself is both a pediatric place and an infusion place. The infusion doctor is a pediatric oncologist, I think, by training. He built this palace to make it nicer for both children and anyone who needs any type of infusion. The offices are even done up the way the rest of the place is. It's amazing; I cannot say this enough. This is way better than having it done improperly by my previous neuro in his office while not following the TOUCH protocol.

Infusion doctor/semi-god is telling me that his current patients are seeing a change somewhere between the 2nd to the 4th infusion. He infused Tysabri before it was taken off the market and strongly believes in it, based on his patients' anecdotal experiences. He has asked me to take 2000 IU of D3 daily. He also wants me on a multivitamin with iron. He's a believer in that sort of stuff. He recommends the vitamin D to anyone in this area (the Northeast US).

So today I am dizzy and tired and still depressed. That last part is great for my eating, or rather lack of eating. Cheesecake and Pringles are still here. Yesterday I had 2 small slices of pizza and a half cup of cereal with milk and some water. I also ate a few almonds while infusing.

I'm still having some trouble falling asleep at night. I attribute this to the depression. I prefer to be alone but I am lonely. I still feel like I am in the pit of despair and I don't know how I can fix it to make everyone happier. I feel like each day is another day I move farther away from the human race. I only feel safe in my apartment. Going out into humanity is frightening. Everyone expects things that I just can't give now. The increase in meds have made life easier chemically but the panic and depression are still there like bubbling magma waiting to shoot out the volcano.

Now I am going to rest because I need to do so. I hope your day is going well wherever this finds you. And, of course, to my friend BJM I am so sorry I am such a dolt. I don't even have a card yet. I feel really bad about all of this.

1 comment:

BJM said...

I am so, so sorry you are still fighting the depression. Please know you are in my thoughts and prayers. I am pleased to know the infusion palace was worthy of you, it is about time! Glad you took today off to catch up. I hope it helps!