How long before you got a diagnosis of dysautonomia?

Wednesday, March 10, 2010

Well. This Ought to be Fun

March 10, 2010

So with impending surgery, let the plans begin. This is actually the first time that I will be taken to the hospital without going to the ER, without having an ambulance...except for my rotator cuff surgery one year ago. Now is about the time that you learn yet once more (yes, once more) who your friends really are.

Going to the hospital? Family emergeny? Well, I need to go out of town. Well, I have to go for a check-up (that could be done any day). Well, I'm canceling our breakfast plans. Well, call me if you need me. (How empty is that?) Well, let me know if you need anything (well, won't I be injured and recuperating? I don't think I 'll be interested in picking up the phone). Well, you can come over my house and see me before you go in for surgery, (huh?) Then there's the:

I'm leaving my house and locking my door and coming to stay with you and be with you day and night. I want to be up with you the whole first night you come home.....and take care of you. I can do such and such for you, so don't worry about this. I can also do that and that for you, so don't worry about that.

I always wonder who is going to say what. Who are the ones I can rely on..that have a history of helping..and/or who is different now...who has new love for me so that I can expect this time to be different? Who can I count on? Everyone is busy with their houses literally falling down, or busy trying to keep a job they can not afford to lose. But some people know the true meaning of life, and some just don't see that they don't see....and then there's Grandma.

Which will it be? Excuses, false lullabies, truth...and anything can change at any time, because....each day is different, and the days never follow our plans for the day. There is always the unexpected, the pivotal, the emergent....layers upon layers so that in the end....who will be there for me? Who will be left standing amongst all the 'troops'? Only time will tell.

Grandma is moving in. What a sign of comfort, caring, compassion, and an unhesitating willingness, to live for another person that you love.... to accept this responsibility when she already has many of her own responsibilities. She will do everything. She will be kind and loving to our daughter, and her role will be to exhibit the love of God for all to see. She will speak the truth and she will perform her promises as a gift, not a chore.

For this I am grateful. Already, 12 days before the surgery....I have seen people insert themselves in my life, or go on with their regular lives, or close a blind eye to all that abounds.

So, it has begun. Grandma went shopping with us for a new bed for her room, and it was quite a delight to just be out of the house together. Choosing colors, styles, textures, sizes.....as if we were the preverbial cavewomen seeking to "gather" before the storm. We actually ate lunch out of the house, and drove to the other side of town. For me, it was exhausting to even walk around the storeroom, but I sat and observed as my breathe became too puffy. Watching them open and close 6 different beds, contemplate the size with respect to the room, looking and feeling the texture of the different fabrics: leather or suede. Red or tan. Fancy or plain.

I watched this process although they thought I was just resting, and I inserted my two cents worth at every juncture where a question was asked. From afar, I used sign language as either a 'thumbs up' or a 'thumbs down' vote on the question at hand.

We ate, or else we (I) would have shopped until I dropped...food. Sustenance. I could feel the energy going into my bloodstream...perhaps that was the carbohydrate or the glucose. My hands were still shaking as I picked up my last piece of fresh cheese pizza...but I could put my head down and know..just know..that I would start feeling better.

I stumbled in the dark last night and bumped into a stool. My chin skin ripped just a little, and it did not scab or bleed. Wow. The blood thinner I was told to stop? It is already reversing the blood-thinning aspect....so I must not become a blood clot. I have to drink and drink, to keep up the 'low blood volume' that goes along with dysautonomia.

So today I am pleasantly pooped. Making arrangements to have love in the home....goodnight.

Grandma. We

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