AngelManFL
Active member
- Joined
- Sep 30, 2007
- Messages
- 98
- Diagnosis
- 11/2007
- Country
- US
- State
- FL
- City
- Tampa Bay Area
Hello to my beloved friends, I honestly don't know where I would be without you... "Scared and Confused" was getting just way too long, so I thought it would be best to start a new thread, I hope and pray you will find this one...
Yesterday my Dr's PA (Physician's Assistant) called me because my Dr had to run home (out of the country!), and he didn't think it could wait so he has been in contact everyday regarding me (comforting - sort of?). Honestly I can't even remember most of what she said - it was the tone of her voice that struck me the hardest I think. She said it was imperative I begin therapy asap - I am one step below being on a full-time respirator.. I asked how that was possiple when I am still functioning and working? She could not answer that one - something about breathing being a voluntary muscle something or another I can control it myself while awake - but when asleep, I all but stop, just gasping.. she said it is associated with the later stages of ALS and apologized for having to be the one to explain that to me. She was not aware that I had not been to the Mayo Clinic yet because of course that was the first thing out of my mouth! She apologized again and said she could be mistaken and that she was going by the readouts of my study. But it was that tone in her voice that I just could not and cannot get out of mind, thoughts and every other part of my mind body and soul.. She just changed the subject by explaining the details of what she was going to order and demand I get, I guess the pressure something was 20/17 - she actually said that 3 times in a row like it was unbelievable or something - (some input from ya'all would be greatly appreciated regards to that) - it had to "Auto-Servo" (I think that was the word, like I said it I was foggy by then) had to have a "Backup Rate" and "Ramping up to 60 minutes", I told I had no idea what she was talking about! I guess the DME people will help explain that in detail... She kept apologizing for the Dr not being here and so on and so on... She then said hopefully I would have the machine thingy by the end of the WEEK! Today I so wish I lived in Canada - but have been born and raised in Florida - it would only last about day - maybe two!
no offense to my great PALS and CALS from the Great North Country - but below 40 degrees and I think I'm dying of frostbite! I could not logon last night, I just could not even imagine what I would say or type... I got up this morning and went to work and tried really hard to fight through the day - and I got through it. I feel like I will never be the same again. In my mind I was really trying to completely ignore everything my body was telling me. My heart has known all along - but the mind is a very powerful thing (so I've been told
). I still hold a little bit of hope that just maybe, just maybe the might be some kind wierd vitamin deficiency or freak tumor somewhere they can just remove and all in the world (at least mine) will perfect again... But seriously, I might be one smart cookie - but my mind ain't that strong! A deep deep sadness is creeping inside me that I just am not able to out think or wish away. That tone in that woman's voice spoke just volumes to me inside. PA's down here in Florida normally know a lot more about their specialties than the doctor's they work for... But here I am in the 'States' - at home without the machine - because it has to be cleared through insurance company! I have the best Policy money can buy down here and it still stinks. It is really sinking in. I am scared. I need the Mayo to give me a time-frame so I workout arrangements for Mom and my Corporation... I wish you all lived a block away from me... I am almost 40(5/1) and lie here in tears... I'm sorry, I'll logon again later...
Yesterday my Dr's PA (Physician's Assistant) called me because my Dr had to run home (out of the country!), and he didn't think it could wait so he has been in contact everyday regarding me (comforting - sort of?). Honestly I can't even remember most of what she said - it was the tone of her voice that struck me the hardest I think. She said it was imperative I begin therapy asap - I am one step below being on a full-time respirator.. I asked how that was possiple when I am still functioning and working? She could not answer that one - something about breathing being a voluntary muscle something or another I can control it myself while awake - but when asleep, I all but stop, just gasping.. she said it is associated with the later stages of ALS and apologized for having to be the one to explain that to me. She was not aware that I had not been to the Mayo Clinic yet because of course that was the first thing out of my mouth! She apologized again and said she could be mistaken and that she was going by the readouts of my study. But it was that tone in her voice that I just could not and cannot get out of mind, thoughts and every other part of my mind body and soul.. She just changed the subject by explaining the details of what she was going to order and demand I get, I guess the pressure something was 20/17 - she actually said that 3 times in a row like it was unbelievable or something - (some input from ya'all would be greatly appreciated regards to that) - it had to "Auto-Servo" (I think that was the word, like I said it I was foggy by then) had to have a "Backup Rate" and "Ramping up to 60 minutes", I told I had no idea what she was talking about! I guess the DME people will help explain that in detail... She kept apologizing for the Dr not being here and so on and so on... She then said hopefully I would have the machine thingy by the end of the WEEK! Today I so wish I lived in Canada - but have been born and raised in Florida - it would only last about day - maybe two!

