Last year I did a post asking what people were doing prior to becoming unwell and what getting better allowed them to do that they couldn't do when they were unwell. I recieved many touching posts directly on my blog and several private ones. Not everyone wants to share themselves openly on line, but, for those who do, we are working on creating a page featuring links to your own personal site showing whatever it is you are doing.
We are asking that you just write a little paragraph about your health journey which brought you to do what it is you are doing, and then include a link or links to where more information may be found regarding it. Please send it to my email and I will gather the information and use it to organize the page. Eventually if we get enough, it will be organized by category.
This is for ICAMA patients only please.
Thanks Dr.M & B
Comments
This is a fabulous idea, but
This is a fabulous idea, but can I ask what types of things you're looking for? Functional differences we see in our daily lives? Or symptom changes? I think some people, including myself, don't feel they're at a really good place yet and may be nervous to "count their chickens before they hatch." I know, for myself, I have many differences in the way I function, but I'm very apprehensive to be interpreted as a "success story" when I don't feel like a success at all just yet even several years into treatment. (This is why I don't post much on the forum). Still much further to go! Perhaps if you gave some examples or be more specific about what it is you're looking for, it might help with input from patients? I'm also a little confused by the suggestion to include links to what we're doing? Do you mean photos of us doing said thing (this might be weird.. one of my functional improvements is being able to walk to get the mail.. haha. Or wearing jeans. Big for me, but not very exciting for most). Or do you mean links to certain adjunct therapies someone may be doing along with treatment?? I'm a little confused by this one. Can you please explain? I'd like to be able to send you something, but would like to understand this better first. Thanks!
I'd love to participate but I
I'd love to participate but I too was a little confused about what the subject matter is. I am sure my brainfog doesn't help - lol!!
Please clarify - thanks so much!
Me too, I am also confused
Me too, I am also confused and don't want to send you something you weren't looking for. My scrambled brain on top of brain fog isn't helping my comprehension! Thanks!
OK-I am so sorry for being so
OK-I am so sorry for being so unlcear. Sometimes I think I am being so clear and then I have to laugh at how misunderstood my statement was. My apologies.
LAst year I did a post on what people had been doing before they became unwell and how being sick influenced that and had they gotten back to it or, did they do sometheing because of being unwell that they would not have otherwise. Most of these answers were creative ones like, painting and writing and creating things with their hands, etc....Ans some of these people have websites or links to places featuring their work. I wont name names here.
If there is an interest in this, we will create a page-so that others in the ICAMA community can know about it and ive support to thos individuals. For another example-a patient just recently performed on stage and another patient went to see her. How great is that? Or if I want to buy a bday gift, I could choose from some of the cool things that one of the ICAMA community of people is creating and selling.
This was the idea. Your comments have given me more food for thought, and if there is interest, we could expand upon this further.
Please veryone post your thoughts!
Dr.M
If it weren't for the fact
If it weren't for the fact that the sugar, the alchol, the pot, the anti- anxiety meds, so obviously contributed to my lousy health, I would still be quite happy in my ignorance. There are days that I'm still quite pissed off about it all. Although, at the moment, I'd really appreciate it if you'd change your opinion on my microwave. However, out of sheer desperation, physical pain, three rounds of breast cancer, and one go at mellanoma, I came to the realization that I had to give them up - the chemicals - not the microwave - you may have to come and unplug that yourself.... :) For myself, the pain levels of IC have quickly subsided. For the first time in 17 years I've gone over the five year mark for the breast cancer. However, in the process, my anxiety and terror rose to rates that threatened my very survival. I would spend days, weeks, months, and then several years, trying to hold on to the day that I would be sane again. Sometimes I was scared to death that I wouldn't be able to cope without some sort of medication. There were days that I took miniscule amounts of something, and still occasionally do, when coping skills have become completely lost to me. So, my life was a tite rope act - sometimes still is. I will be forever grateful that you, and others on this site, are often times on the other end of that rope. However, at the end of the day, without a pill, one is quite alone in the dark. So, I am damned proud of myself. I have clawed my way to where I am today. I've spent two years designing, overseeing, and physically helping to build four homes. I've spent a year in horrific therapy. I've learned, for the first time, how to just be present with myself - to actually hear that inner voice that holds such truth and wisdom. Admittedly, it is still more fleeting than not. However, I am kinder to myself, have fewer expectations on what has to be. I have my first grandbaby. She's opened up my eyes to my past and helped me to see something that I'm not sure that I'd ever really learned; the value of a precious moment.
This is a beautful story
This is a beautful story Denise! And if you like, we could include it on the page and for example put a link showing a home design you have built. I think you do it for yourself and not others so, in your case, it would not be an advertisement to show off what you do, but, it would show off what you do-which is incredible and I know how much you enjoy it.
Your victories always warm my heart because I do know how hard fought they havebeen! You are incredible.
Dr.M
Amazing!!! Thanks for sharing
Amazing!!! Thanks for sharing I too would love to see your work!!!
Claire C
I think I understand better
I think I understand better now! Thanks so much for clarifying.
Dear Dr. Brizman
Dear Dr. Brizman
Thank you for your kind words - they mean alot to me. I have no problem with my words showing up elsewhere. The thing is, I am so backwards to social networking - hate Facebook. I have no idea how to download things and link it to something. One of your previous blogs asked us to "like" something that you had written if it struck a chord with us - I'm still trying to find the like button.....My phone is definately not a "smart" phone - texting nearly impossible - HOWEVER - it's water proof and can survive all kinds of abuse. I say all this to explain why I probably won't be doing this..
You know-I think many of us
You know-I think many of us are in that generation of tending toward a little technical clumsiness:) me too!
I will copy paste your story-will try to set the page up in the next several days. I have collected about three stories.
And I know others have expressed interest, and also hoping last years people will re-express interest and I am going to start it. Once it is started then hopefully people will see it, the idea and want to participate.:)
So, do you want stories even
So, do you want stories even for those who don't really sell products?
Yes. I was just trying to get
Yes. I was just trying to get instruction to our web person today explaining everything. Hopefully going to have instructions up soon. Hang on.