Ventilator/Doctor Appointment Update

JohnBFisher wrote:...peripheral neuropathy. My bad days often include overwhelming tingling. As the symptoms have increased, so have this. You will find me curled up on a bed. I will then try to listen to an audiobook to try to ignore the tingling...

Investigate taking befotiamine, it's a B1 (thiamin) derivative that for some is remarkable effective in amelioating neuropathy pain so I'm sure it'd help with the tingling. It works in different chemical pathways from B1, so when those pathways are compromised with say diabetes, this helps. Best wishes that it provides some relief

John, you and Madalot are very inspiring! I follow your posts, both of you.

Madalot, way to go with better breathing, I hope it continues for a very long time!

Thanks for the update Madalot, there are many here who care about you even though we have only met you virtually. You had mentioned that there was a new RT that seemed ok? Am I remembering wrong? Anyway I hope things continue to go well!!!!

John, I hadn't realized your situation either. I hope you also have more better days than not nice ones! I had only a small short snapshot of what's it's like to be unable to work, and it's no fun.

But yet it's still amazing how resilient we humans can be! It is really mind over matter, I think. If we are kind to ourselves, and we learn to adapt, then we are still better off than miserably pitying ourselves in the corner.
I really like the basket-o-troubles stories!!

Best wishes to both of you!

Muse-Inc wrote:John, you and Madalot are very inspiring! I follow your posts, both of you.

Madalot, way to go with better breathing, I hope it continues for a very long time!

Thank you! I hope the better breathing lasts, but I know that it will change/worsen at some point. Let's just hope that it takes its sweet time! I rather enjoy sleeping and breathing okay at night.

echo wrote:Thanks for the update Madalot, there are many here who care about you even though we have only met you virtually. You had mentioned that there was a new RT that seemed ok? Am I remembering wrong? Anyway I hope things continue to go well!!!!

I really appreciate this!! As far as the RT, yes, my DME has a new one and I had really high hopes for her. Unfortunately, I'm losing that faith as she was going to look into something weeks ago and get back to me, but that never happened.

As much as I hate to admit it, I think I'm pretty much on my own in this. The RT can be reached in an emergency, but for regular questions or concerns, she isn't very available.

But -- it is what it is...and I'm doing okay at the moment.

Ugh, sorry to hear that. Why don't you give her the benefit of the doubt, and give her a call back yourself? Explain very nicely that patients rely on her to provide timely advice or info etc. If you feel up to it of course...

Okay is better than not okay

echo wrote:Ugh, sorry to hear that. Why don't you give her the benefit of the doubt, and give her a call back yourself? Explain very nicely that patients rely on her to provide timely advice or info etc. If you feel up to it of course...

That's part of the rub with this situation -- I can't just call her. She doesn't work for the DME. She works full time in a hospital and works for the DME "as needed." Even if I had an emergency and needed her, I would have to call the DME, who then would have to page her. If she happens to be on duty at the hospital, I am pretty certain the DME business would have to wait.

It's not an ideal situation, but my choices are really limited on what I can do.

In truth, unless something really unexpected happens, I'm pretty good at addressing any changes BEFORE they become an emergency -- I hope anyway.

Double sorry to hear it Madalot! You are one tough cookie.

echo wrote:... But yet it's still amazing how resilient we humans can be! It is really mind over matter, I think. ...

I agree. Though while going through a rough patch, a quip that is seldom quoted, but should be, is from the Disney character Iago. In "The Return of Jafar", Iago quips that "It's amazing what you can endure!" (or something like that).

For those of us living through a chronic - never ending - situation, there is SO much truth in that. It's often not courage. Sometimes I am strong and face adversity in a way that doesn't show to others. But often I just pray that I will get through it.

When those times come, I do everything I can to divert my attention. Listening to stories can help. It helps me get away from the sensations and focus on something else. Sometimes trying to help others makes it easier. And sometimes just trying to fall asleep is my best bet.

But I'm forever remembering that quip: "It's amazing what you can endure!"

There's an old phrase many people mindlessly use: "God never gives us more than we can handle!" But as the Jewish wiseman retorted: "Does God have to trust that I can handle this much?". Of course, then I remember a poem scrawled in the basement of Krakow. Though facing certain death, the writer made the most amazing statement of faith that the sun will rise tomorrow. Essentially, claiming that God continues, though we may not.

John, I've always wanted to tell you that I love your photo, your face and the words you write are one and the same.

DoriC wrote:... your face and the words you write are one and the same ...

Oh, I'm so sorry. I don't mean to hurt others. LOL! 8^)

Thank you, Dori. I try to help as best as possible. Helping requires three active steps: listen, understand, and reflect. I always hope what I do is to listen, understand and reflect. Though this I can help others.

JohnBFisher wrote:There's an old phrase many people mindlessly use: "God never gives us more than we can handle!"

Sometimes my response to this is "Well, perhaps, but you sure are pushing it these days!!" Especially when I feel lousy (which is almost every day) and my children are being stinkers.

LOL -- But it helps to remember this and it does give me comfort and strength.

And John -- I agree with the others about you and your posts. They have been incredibly helpful to me. While I am so sorry that you suffer from a progressive and debilitating disease, your experiences (and your willingness to openly share your struggles) has helped me more than I can express to you.

Madalot wrote:... your experiences (and your willingness to openly share your struggles) has helped me more than I can express to you ...

And THAT is exactly why I do this. I do not want the attention. Though my situation can be aggravating, there is no doubt that others suffer far more than I. I am blessed to have something I can handle (most of the time). The choice to take disability was one of realization that my condition now fundamentally interferes with my ability to work. But it does not impact who I am.

I've seen others use such a situation to attain attention. That is not my desire. The *me* in my story is not important. The *we* is all important. *We* all face difficult times. Unfortunately, these troubles often leave *us* feeling more isolated than *we* are often willing to recognize. To affirm this, note that severe depression stalks those of *us* with chronic disabilities.

Though *we* feel isolated, even in such a journey, others join *us*. So, when I share my journey with others, I always hope to help others see that *we* walk together on similar journeys. And though I articulate mine, I marvel at how many people face problems with grace and courage. And it is that willingness to help others that I find so unique about this site.

I am finding this to be a very uplifting thread. Thank you John and Madalot for your wise words! The story of the basket-o-troubles has really been on my mind since you mentioned it here... for some reason it really touched me.

I too was going to mention the "god doesn't give you more than you can handle" thing bit I'm not religious so I can't really say I believe it... bit i can see how it is comforting.

Regarding diversion... this site can be wonderful for that! And you get to help someone too if you (and they) are lucky

JohnBFisher wrote:

Madalot wrote:... your experiences (and your willingness to openly share your struggles) has helped me more than I can express to you ...

And THAT is exactly why I do this. I do not want the attention. Though my situation can be aggravating, there is no doubt that others suffer far more than I.

This last comment is something I use a lot to get myself back on a solid foundation during those "self pity" times that I'm sure you have as well. No matter how bad things may get at times, I know there are others that have it worse than me. The idea of needing a ventilator was a little overwhelming and depressing. Shoot -- I started out on a cpap machine and within three months went on a ventilator!! Wow.

But -- there are people with neuromuscular diseases that are on a vent 24 hours a day. I only need it when sleeping (at least for now).

And as I've said so many times -- I have exceptional family support in all of this. When I read about people with diseases similar to mine whose family is just awful, it really hits home how lucky I really am.

Echo -- I'm glad this thread has been uplifting for you and hopefully others. And maybe some new person will find this forum and find information and/or strength dealing with their "unusual" situation. I feel very comfortable in saying that I don't think I'd be where I am in all of this if not for this forum and people like John --