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-   -   Letter (https://www.neurotalk.org/myasthenia-gravis/207945-letter.html)

Panorama 08-10-2014 05:19 PM

Letter
 
I'd like to share the body of a letter I sent to the O'Connor Hospital:
I want to thank everyone working at the Ortho/Neuro Unit at O'Connor Hospital. Your staff took wonderful care of me during my recent Myasthenia crises. I am most grateful. This goes for everybody at O’Connor, those who I could see, and those who I did not see.

This was not my first Myasthenia Gravis crises. My first crises came in September 2013, two months before I was diagnosed with Myasthenia Gravis. This fight was so much easier than the first, though.

The first time I did not know what was happening, the first time I did not know there was a treatment, and the first time I fought alone at home.

This time I knew exactly what was happening, this time I knew of successful treatments, and this time I had all of you fighting with me. I was not alone, and it made all the difference.

During a six-day day stay in the hospital, one does not have much to do, except observe the staff and sharpen one's eavesdropping skills. I observed a skilled, professional, and compassionate team of people doing important work.

Thanks for all the care I received from O'Connor Hospital's doctors and nurses, therapists, and the housekeeping staff, all of whom took fine care of me, and from what I could see from my perch in room 5120, many others too.
I also frame the letter and dropped it by the Ortho/Neuro Unit.

-Mark-

Panorama 08-10-2014 06:21 PM

I am 10-days out of the hospital. I feel happy and healthy. I have positive mental attitude with optimism for the future.

Now all I need to do is catch up on the news from the last three weeks. The national and international press must have been dominated with news that will help me keep this sense of well-being? All I heard over the three weeks was that someone named E. Boli wants to immigrate to America. :)

-Mark-

southblues 08-10-2014 07:18 PM

Mark, you always have a great attitude. You encourage me and others with your positive outlook.
:)

Joano 08-10-2014 08:39 PM

What a nice letter you wrote to the hospital. I would imagine that they don't get too many positive letters like this and they have probably posted it in a conspicuous spot for all to read. If anyone takes the time to write, my guess it's mostly to complain about something so this would have been a real treat for the staff.

Panorama 08-11-2014 09:54 PM

Update
 
Quote:

Originally Posted by Panorama (Post 1088482)

Now all I need to do is catch up on the news . . .

Update: Yikes . . .

-Mark-

AnnieB3 08-12-2014 02:55 PM

Mark, That's a great thing to do! Although, you might want to consider resting a bit more! ;)

After one of my more traumatic experiences, where a doctor and his team helped me out, I sent them gift cards/baskets because I was so grateful for their help. I had never sent more than a card or letter before.

Doctors like to be thanked for doing a good job, just as the rest of us do—when we could work, that is.

I'm glad you're doing better.

Annie

Panorama 08-12-2014 05:55 PM

Quote:

Originally Posted by AnnieB3 (Post 1088862)

I'm glad you're doing better.

I think a lot of it is the return to the 60mg Prednisone level for the last three weeks. It is like the opposite of chronic fatigue for me. The preds make me feel stronger and more motivated. They make me want to do things again, like photography.

I am aware of my limitations, though. Off-Shore fishing is out of the question, but I wish I could join my friends on the water this week. The Monterrey Bay is not a friendly body of water. It is windy, overcast, and has rough waters. It takes a lot of energy and muscle control just to maintain one's position in the boat, let along reeling in a 10 to 40 pound Salmon or Tuna.

-Mark-

Panorama 08-12-2014 07:27 PM

Quote:

Originally Posted by AnnieB3 (Post 1088862)

I had never sent more than a card or letter before.

Annie,

In addition to the general letter, I sent one to highlight an individual:
I recently had a six-day stay at the Ortho/Neuro Unit at O'Connor Hospital. Your staff took wonderful care of me. While I should be writing dozens of individual thank you letters, I wanted to draw your attention to at least one individual, Lupe from Housekeeping.

Lupe's housekeeping skills were not superior to the others. All took fine care of my room. It was the way Lupe entered my room with a light knock: "Honey how are you feeling today. Can I clean your room? Do you want me to come back later?"

I know this might seem like a small thing, but in the moment, I found a great deal of comfort in Lupe's kind words, and her gentile demeanor. Thank you Lupe.

And finally, I got my RN Dave a small gift, a mufti-pocket cargo vest, like the one I wear. It will be ideal for all the little gizmos and potions he carries around from room to room.

Dave did me a great service. On the first night the doctors wanted to move me to the ICU, not because my life in danger, but because I may have needed more attention than they could offer on the ward. I was aspirating with an NG Tub. My mouth would not shut, and I could not clear my throat.

Dave made the case that they could take care of me on the Ortho/Neuro Unit. I was in a small, quite, single room. I was doing my own suction, and I was keeping my tong and lips moist with square swabs. This seemed to impress the doctors. It was easier for me to do it myself, and it was much easier than what I had been doing before--reaching into the back of my throat with a cloth every few minutes.

Dave came into my room and told me that the doctors wanted to move me to ICU, but that he and the other RNs wanted to keep on the Unit. Not being able to speak, I pointed to the ground, indicating that I wanted to stay right where I was. And I did.

-Mark-

Panorama 08-13-2014 06:38 PM

Quote:

Originally Posted by southblues (Post 1088504)

Mark, you always have a great attitude. You encourage me and others with your positive outlook.
:)

Celeste,

Would you mind having your comment notarized, and then send it to a few of my ex-girlfriends?

-Mark-


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