Wednesday, February 13, 2008

Cyber bird delivery

One bag down, three to go. The pharmacy did it differently this time. Last month we had one big bag that was for the whole time. Now we are back to the daily bags. They tell me there is a new pharmacist. My query. Any improvement? So far, None. Accck! This has been a problem ever since I started getting these. It did not seem like the IVIg was that much a rarety, but last year when my neurologist started me on these, many health professionals were not familiar with them, or at least that did not seem to be the case. I did a lot of searching because I wanted to know what was to be going on with my body, and what to expect. The problem was that the pharmacy changed the way it was administered with each bag they sent up to my third floor domain. It would have my nurses scratching their head in bewilderment sometimes.

Well, here we are again this morning (Wednesday). Dr. Saeed was by and he changed the duration of the IVIg to the five days he told me it would be. My nurse, sweet and thorough Tanya, waited for the instructions from pharmacy before she changed the rate. They told her the rate would not change. Dr. Saeed said if the headaches continue, or worsen, the rate is to be slowed. Guess we'll just have to wait to see how this game plays out.

Dana from Dietary came by to see me this morning. She has always been such a big help to me since my first admission with the swallowing problem. Between her and the speech pathologist, along with the first IVIg treatment, I went home being able to swallow better. I was so happy to tell her my swallowing was *much* improved now, and I do not have to thicken my drinks. It *is* better if my foods are soft for my swallowing, my mouth, gastroparesis, especially the gastroparesis. Cream of wheat, oat meal, and grits are my three main food choices that I can eat at almost any time. Hmmmm wouldn't some of Jim's cream of wheat taste good right about now. My chef-extraordinary can whip up the best pot of cream of wheat at the drop of a hat - maybe just mentioning it to him would be sufficient. How will I ever survive five days here without any of it. I've never heard of cream of wheat withdrawal, but surely there is such a thing. Just the thought of it is making me chew faster on this cracker. What kind of cracker? Surely you jest! Keebler Grahams with cinnamon. They make other kinds?

It is relatively quiet around the hospital right now, so I think what I'm gonna do, find me a good cyber bird to deliver this just in case things might change in the coming hours. I'm not happy that the head and neck aches have begun already. Not what I wanted to see. Doesn't mean they'll continue, nor that they will get worse. I know what I need is something pulling all those positive signals my way, giving me some good antibodies. At least that is what I think they are doing.

The headache. The neck. The shoulders. I forgot about these pains. Worse. They are gone after the IVIg is done, but now. The percocet. The two shall meet. Let the percocet win out over the pain! Three more bags of this? Dr. Saeed told Tanya there will be less medicine - immunoglobulin - in the remaining bags. Maybe that will prevent the pain from worsening. That is how the game will be played.

Going to the land of the percocet. See ya later!

Striving for a world without Myasthenia Gravis

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