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Something To Be Thankful For/Happy Thanksgiving To Everyone!

Nov 25, 2009 - 9 comments
Tags:

Thanksgiving

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Recovery

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treatment

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Research

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NMDA Receptor Modulates

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Tardive Dysphrenia

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Tardive Dysmentia

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Tardive Psychosis

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family

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support

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Disability Accomodations

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Schizoaffective disorder

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ginkgo

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glycine

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Vimpat



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  Today started off as a day where I was on the brink. And within a short time it reminded me of exactly why life is worth living and why I need to be around and how other people are actually kind and will help you and why you should provide that very same help in return. When I woke up I was having dysphagic choking spasms and dystonic reactions. I could hardly speak. During those times, neurologically I lose the will to live and I have a feeling of hatred towards others. I don't really "feel" this way. Its neurological and what they are defining as tardive dysphrenia. But being homebound and isolated and seeing other people enjoying life does make me feel burnt out. I did make one real world mistake. I went out to pick up some groceries. In doing so I left the keys inside the apartment mailbox. That "mistake" was from the loss of cognition from tardive dysmentia. But being mentally recovered I didn't panic. I rang all the apartment bells but no one answered. I bought the newspaper from the local store and got some quarters. I called the super on a payphone but only a fax tone went off. So I thought again. I went to the pharmacy that prescribes my medications. They asked me what medication I needed (Methocarb) and they gave it to me. They asked me for the phone numbers of my family. I could hardly speak. They said "calm down". I couldnt' physically and explained it was akathesia. Gingko is not a prescription but I am authorized to take it by my providers so I bought some and took a pill. It stopped all the aspects of tardive dyskinesia (its in clinical study). The pharmacy called my mother and she was on the way. I went back home. But having done it before I tried again to ring all the apartment bells. A person let me in. I called my mother on the TTY and let her know I was safe and sound so she could drive to my grandmother's house (who does need help on a daily basis). I went out to pick up the wash (making sure to bring the keys and any medication I needed for the day as well as the doctor's letters that explain what I have and what I take) and when two next door neighbors came in the door with heavy packages made sure to hold the door for them. Everyone had come through for me so I knew that despite any neurological feelings I could not control that any mental feelings of antagonism or self loathing must be cast aside. I reminded myself why I am thankful. I am thankful to be alive. I am thankful that my providers worked with me to identify what was going on (tardive psychosis, tardive dysphrenia, tardive dysmentia) and find treatments for it (so far Vimpat is really working out) and for the oppurtunity to have it be identified so others can be helped and having other people, as I have, recover from a new generation of antipsychotics that won't cause tardive (NMDA receptor modulates). I am thankful for the neighbors who opened the door. And I am thankful for my close friend who as it turns out will be visiting for Thanksgiving. I have every reason to be alive and everytime I experience very real pain physical I should remind myself I helped identify treatments with the help of my providers. And think of the others who could be treated.
  So to keep it short within a short time I recieved a very real world lesson on why the world is not an antagonistic place and there is good in people you may not know is there if you look for it. And to everyone, whatever you may be coping with, I wish you well and a very happy Thanksgiving.

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by margypops, Nov 25, 2009
I read your story about your experience today ,it was humbling , I think it is good to always see the glass half full as you do and you are right I am now going to count the many ways I am lucky , thank you, have a great Thanksgiving day and I am glad you are feeling better .Hugs  Marg

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by starbunny, Nov 25, 2009
I agree, it made me regain some perspective over my own life, you have had to be so strong and brave. I am full of admiration because you never allow yourself to be beaten by life's trials and have managed to change negative experiences into positive hope for others. I am going to think of all the ways that I am lucky too. Happy Thanksgiving, Awen

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by doctora, Nov 25, 2009
I am Thankful that I can chat to you and get an intelligent response, primarily in regards to medication.

I thank you for mentioning the Abilify rather than the Gedeon, which was making me crazy. BTW the Abilify is working well.

I am Canadian, so we have already had our Thanksgiving, but this gives me an opportunity to Thank You for caring about me.

Enjoy your holiday, you certainly deserve a good one!

Cheers!

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by 1002, Nov 27, 2009
Hey the approach to your situation is great and by the comments I think that despite the difficulties you have in fact achieved something very real. Often as we battle we tend to see the problem and do not notice the positive input into others lives. Thanks for your inspiration. Enjoy giving encouragement to others this season

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by freebird227, Dec 09, 2009
   Hi Friend,................I loved your journal entry and your self awareness. I was mostly inpressed with your ability NOT to throw a fit, when you found yourself locked out.* Usually that is my trigger to start negative self talk. Character assassination to the extream*********** and then the panic sets in.
  I will have to say that at times my heart is very tender toward you and your life experiences.
Did your friend make it in for the holiday?................Love to you, Debra

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by ILADVOCATE, Dec 09, 2009
Thanks for commenting. Yes my friend did visit and we had a very nice Thanksgiving with my mother here as well. And a very appreciative one too..

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by kathy434, Dec 10, 2009
ILADVOCATE,

I always enjoy reading your posts.  You are very intelligent and engaging and able to communicate so well.  Now you told this story about locking yourself out and everything you did to help yourself.  I am VERY impressed by your ability to keep your cool, seek help, reason things out, and steps to problem solve even in distress.  Many people would throw up their hands and declare the world a disaster zone, that fate was out to get them, there was nobody who could help them etc., and here you are opening up my mind, my world, my sense of self preservation and I admire you so much.  Not for just your incident, but also your sharing your story and so beautifully.

Thanksgiving has passed by now, but I will always remember your story of hope, positive approaches to problems and ability to think beyond the box.  I always enjoy reading your posts.  Have a very merry Christmas.  Kathy

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by ILADVOCATE, Dec 10, 2009
Yes. Thanks for your comments. Right now I am working with my mom to arrange for my grandmother to have a home attendant, and since my grandfather died, although she has friends she physically is unsafe as she had falling episodes when she lived in her house (now she lives in an apartment, but when she fell my grandfather was alive to call 911). This way she can continue to live in the community but with the supports and services she needs as all people with disabilities should. Also of course I am continuing to advocate for accomodations for myself and there are many appeals processes to go through. Some have been successful. Some have not. But its just a matter of keep trying until I perservere. Within a week I will be seeing my neurologist who is a movement disorders specialist and my psychopharmocologist and they not only research new treatments so I can continue to progress in physical recovery but also assist when it comes to documentation for the accomodations I need. When people work together as a whole, its a win-win situation but then again that's always been true.

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by peaceofmind888, Jul 31, 2011
Dear ILADVOCATE,

I just discovered your journal online.  You are an inspiration!  Thank you also for the comments that you have made for me on MedHelp.

Sincerely,

peaceofmind888

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