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Post by matisse on Apr 19, 2021 20:21:13 GMT -5
Interesting blog. On will/way though, it seems to me he can actually do a lot of the things listed? Like NYC. I have been there dozens of times for work. I have been all over the place there. I couldn't use the subway, but the whole area between Central Park and the Empire State is rollable in my power chair, and that area has a ton of stuff. I did find the theater to be a bit frustrating. They have very few accessible seats, and some have none or no access to the theater. I also found that I definitely had to call ahead to restaurants to ask about access and bathrooms. Some places still have that dreaded one step to get in. Sometimes a random street in that area lacks a curb cut, but there's always a way to go around somehow. For a great view of Times Square that most people don't seem to know about, the bar at the Marriott Renaissance is accessible.
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Post by cilantro on Apr 27, 2021 21:32:28 GMT -5
New blog post! And new look for the blog. Check that out and read about my grad school rejections and job search.
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martink
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Post by martink on Apr 30, 2021 10:02:00 GMT -5
I enjoyed reading your newest post! You are a fantastic writer. Your ability to capture emotion, and convey that feeling, to your readers, is a truly impressive talent. Please keep writing these posts; you understand the realties of MD and illustrate them very well.
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martink
Junior Member
Posts: 63
Gender: Male
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Post by martink on Apr 30, 2021 10:03:21 GMT -5
Great tip NOT to have a twin bed, too!
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Post by cilantro on May 1, 2021 21:45:30 GMT -5
I enjoyed reading your newest post! You are a fantastic writer. Your ability to capture emotion, and convey that feeling, to your readers, is a truly impressive talent. Please keep writing these posts; you understand the realties of MD and illustrate them very well. Thanks so much! It always means a lot to get praise from another writer!
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Post by happyface2013 on May 11, 2021 13:21:32 GMT -5
Link doesn't appear to be working.
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Post by cilantro on May 11, 2021 13:34:50 GMT -5
We got a new domain! I meant to post about it, but it’s now www.rnz-blog.loveWe decided we had been at it long enough to buy a real website name. Sorry for any confusion that caused! There’s a new post up and another in the first draft stage so plenty to read!
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martink
Junior Member
Posts: 63
Gender: Male
Dev Status: Disabled Male
Relationship Status: Single
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Post by martink on May 26, 2021 18:52:17 GMT -5
Cool new site! I just read the biPap post. I hear you and I feel heard!!
Ah! The biPap mask is one of the biggest frustrations for me as well. Not only does it cause all the problems you mention; one of the issues I find is how hot, and itchy, and irritating, the strap feels on my neck, forehead, and face. A couple of suggestions that I have found to be helpful:
1. I have a very small nose, most masks come in a petite size. This gives me a good fit. 2. My mask fits solely over my nose, and doesn’t go over my nose and mouth. Not sure if that’s an option for you. 3. Do you use the ramp feature on the machine? I use that when I fall asleep, and again, throughout the night if I wake up and then want to go back to sleep 4. I try to stick to my sleep schedule as much as possible. 5. Do you have oxygen bled into the biPap? This can be very helpful! 6. This might not be an option for everyone, but I know that if I have a drink in the evening (I’m talking one drink) it really does help me sleep. 7. My mask has a gel nose piece that can be changed out; I try to change those out frequently. Maybe every month or so. 8. Do you change positions when you sleep? Being in a new position can help when you want to return to sleep. 9. Do you use the humidifier?
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Post by zacc on Jul 20, 2021 22:03:39 GMT -5
We've been bad about updating on this thread but there are 2 new blog posts! Both written by cilantro! Check them out here and here.
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Post by britishtetra on Aug 22, 2021 4:52:04 GMT -5
I have read your blog this week and I found it really interesting. Running away, it’s pretty simple really, get into an argument and you disappear. I ran away from home many times when I was a kid, okay I’ll come back when I was hungry. Being paralysed on the bed, you cannot do it. Many times I have gotten into arguments with my parents, carers and in the end you have to compromise. Most of the time I just keep the peace. Okay you win! When I am in my wheelchair, I just go up the garden, but it’s not like climbing a tree and hiding on the top branch. Eventually you get caught 😀
Pete, 👍
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