AngelManFL / Don

[swmn]

Tough love

Ok Don - bear with me
I dont get it - the bipap should have been fitted for you -Mayo is anal retentive about this - I know it's your own business you are trying to run - but how can you work if you dont get any sleep?
- not to be morbid - but going without the bipap - well - you are spending much of your night on the verge of death.... I know b/c my mom stopped breathing 66 times in 1 hour - that is pretty dead to me.... and she is ony on a c- pap...
I am really concerned that you would even consider sleeping w/o the machine -

Hey - you might as well stay up all night and work then - at least You'd be breathing.... - ok - that was harsh - but WOW - time to do a reality check on priorities! We want you to do as well as you can to fight this F@#$ing disease - but you have to help yourself - use the bipap -readjust it as much as you need to - but make it work - your life depends on it!
We love you {{{HUGS}}}

 

[Icanmanz]

Hi Don, sorry that you are having a hard time. Don, why is that welt on the back of your head? Is it the elastic that is attached to the face mask that is causing that, or what? Have you tried to apply some Hydrocortisone cream on it? That Hydrocortisone ointment is good for just about anything! I will keep you in my prayers. You won't see me posting tomorrow night, I am spending the night at my son's and his family. You take care, and God bless! It is always so nice to hear from you. God bless!

Irma

 

[Gina]

HEY DON, i second what swmn said ....you need to reconsider your priorities....I know you love your work but sad to say we can all be replaced !I have never heard anyone say on thier death bed that they wished they would have worked harder!Your familly and friends and relationships are what you will have the most regrets about so please reconsider connecting to them and taking care of yourself so that you have time to build on those precious gifts.......Gina

 

[CindyM]

I agree. Any machine that allows us to get a good night's rest is worth the effort. Sometimes I wish I could just lie down and sleep like I used to, but proper breathing at night keeps my symptoms under control. I just have to face the fact that my days of living like I used to are over. This is my new reality. JMO, Cindy

 

[AngelManFL]

SWMN to the rescue!

Hi to all of you - your care and concern for me so overwhelming and so encouraging to me. I have spent my entire life caring and taking care of others and in my family's case - even being their keeper... I want to thank all of you for 'tough' love and advise..

SWMN - our conversation last night worked very well - I used a washcloth under the straps as you suggested and was able to adjust it and as soon it was comfortable I was out cold! Still a little too tight on the bridge of my nose, it also still hurts...

It turns out the welt on the back of my head is now infected from being so inflamed and for so long (4 days now), my Dr also thinks the bridge of my nose could be too... Has anyone ever heard of such a thing? I am on a really strong antibiotic I've never heard of Septra DS 800/160 for the next ten days..

As far as the Mayo Clinic, I leave Sunday again for Jacksonville - Monday morning I will be seeing the Pulmonary Dr and having some kind of tests done.. Trust me - I will definitely be bringing my mask with me! the one I have now is supposed to be the best one available - or at least available by my insurance? I will certainly find out..

Swmn - I just can't thank you enough for our pm's last night, you are the reason I was able to sleep.. My Aunt and Uncle are going with me again - I just don't know what I would have done w/o them last time.. They are both so very helpful and so kind to me - I was devastated when I found out I would have return 3 more times before a Dx... they really helped me stay focused on the moment and to take it as it comes, one step at a time. You also in all your pm's and this very thread - honestly gave me the strength to get thru it all and to this very moment help to keep fighting.

Gina you are right also - I need to focus more on taking care of myself and healing relationships too.. I think about you every day and pray that you are healing and just that you OK...

Let's pray tonight will even be better and a little easier for all of us...
Goodnight

 

[Gina]

DON,thank goodness you got yourself some sleep and help from the doctor...do you think that you could have some kind of allergy to the material in the mask.My Husband had irration as well on his face from the mask and when i mentioned to the nurse she asked if i had been putting any lotion on his face.....and yes i had b/c his skin was very dry...apparently that was a big no no b/c it interacted somehow with the silicone,or whatever it is the face part is made of to seal it and caused irritation.After that i would just wash his face with a little soap and water and the rash all but dissapered.I think also if you have oily skin that might be a factor but i am just guessing thier!Anyway just wanted to tell you that i am thinking of you and am glad that you have familly to go with you to the clinic.We always took some familly members when we went as well and it was very helpfull.....Good luck and please take care of yourself!luv&prayers

 

[swmn]

Just Use It!

Hey Don!
Thank you for your sweet thank you's - you are such a thoughtful person.

I hope Mayo can make adjustments to your mask so you are as comfortable as possible.

The biggest way you can thank us is just by using that Bipap; making it as comfortable as possible - could you use a little gauze pad at the bridge to eleviate pressure the same way the wash cloth worked? - just an Idea - worth a try....

{{{ HUGS & PRAYERS}}

 

[Al]

Hey Don. Glad the washcloth idea worked but that also made the straps tighter. Bet you a nickel you never thought to loosen them did you? That would make the nose tighter. Hopefully you'll see an RT soon that knows how to fit the mask properly.
AL.

 

[kmgy]

I agree, hopefully the rt at mayo will get that mask to fit properly for you. good luck on monday, will be thinking about you.

 

[swmn]

actually, Don and I did discuss the need to loosen the bands and he did so - but the nose pc has been a problem from the start.... don't understand why this wasn't fitted appropriately in the first place.....

 

[Gina]

Hey AL did yah send Don a nickel?hehehe!

 

[Al]

At least now a nickel is a nickel. Send me your address Don and I'll pay up. Costs 60 cents for a stamp though to send a nickel so how bought I owe you one. That way you'll never be broke. LOL.
AL.

 

[AngelManFL]

Finally back from Mayo..

Hello to all,

I'm very tired - but will do my best.. I was only supposed to be there one DAY! I don't even know how mant tesy they did or the name of most of them, I'll have to look them up and get back to you.. I saw the pulmonary Dr 1st and it went from there - she thought I had some sort of lung cancer! it turned out I did not - but my God did she scare us - like I said, only one day.. we got late last night - I was out of meds and my mom was in the hospital. Most of you may know by now, I am her caretaker - she lives in my home, she is not well - her bone marrow is not producing enough red blood cells, kidney disease, congestive heart failure and she is bleeding internally... and they sent her home. As for me - they have no idea - they did find 2 spots in spine that the disk are nearly gone, I leave again early Mon. morning for 2 more appts Mon afternoon and one Tues morn. and hopefully can come back home again to return to work - been doing it over the phone... They did give me a tens unit to take home and it does help some.. I just can't go on anymore tonight - too tired.. Hopefully tomorrow will be stronger and my mom stable. Thank you so much for your support and pm's - they just keep me going. Goodnight my friends.

 

[kmgy]

thanks for the update don, i was thinking about you. keep us posted.

kmgy

 

[Gina]

Hey Don, also have been thinking about you please as kmg said keep us posted ! you and your poor mom are in my thoughts and prayers.I so admire your courage and spirit i am praying that what you have will be treatable.You have suffered allready too much and i want so much for your spirit and courage to be a testimony for all that still suffer on this journey and that you will always be thier to encourage all of us.!.....Gina