I'm Back (with an update)

[BleepingBeauty]

Hi, everyone. I've missed you guys! I see lots of new members have joined since I've been MIA, and I have a lot to catch up on around here, but I figured I'd start with an update of my own.

I'm doing pretty well (and hope all of you can say the same). My therapy is still going well, although stress has invaded my sleep recently, and my left shoulder is pretty painful these days. I'm working on managing the stress better, and I'm scheduled for surgery on the shoulder in August.

My situation with the current sleep doc is the same. She was supposed to call and follow up with me by the end of last year (after putting me on supplemental O2 at night), but I never heard from her. So I wrote her in late March, explaining that I was lucky enough to find an ASV that I could afford on CraigsList in January and had been using it since, with great results. I explained how I arrived at the settings I'm using, told her how good I was feeling, that I was dreaming every night, waking up feeling like I really slept, not nodding out during the day, etc., and I included several pages of data so she could see how well my therapy is going. I asked her in the letter whether she would continue to treat me, since I had gone down this road without her knowledge. Six weeks went by with no response to my letter, so I called the office. Her assistant retrieved my file and read me the doctor's notes (dated about a week after I'd sent the letter), which basically said, "patient doing well, continue treatment as-is, call if any problems."

So, since the doc was obviously okay with what I'm doing, I asked the assistant about a script for an ASV so that I could purchase a backup if I found another one I could afford on the auction or from an online dealer. She spoke with the doctor and called me back a few hours later, saying that the data doesn't prove that ASV therapy is right for me, and I would have to undergo yet another sleep study before she'd write a script for the ASV. Not happening. Five studies is more than enough for me...

I recently asked the sleep doc for a script for a new Hybrid mask, since my DME requires a script for any mask they don't carry in their inventory. She did write me the script for the mask this time, but I was told that if I ever want a script for another mask, I'll have to see the doctor first. Why I need to travel for 4 hours round-trip to obtain a script for a mask is beyond me, but the issue is now moot (thankfully); I recently switched PCP's, and the new one is willing to write me a script for anything I need in the way of xPAP equipment. So unless something goes terribly wrong with my therapy, I see no need to consult with a sleep doc again, and that's fine with me.

So that's my news. It's good to be back, and I hope to catch up with all of you in the coming days and weeks as I get back up to speed here. Hope life is treating you well.

BB

[Jaylee]

So glad to see you here.

[Jersey Girl]

Dear BB,

So sorry to hear that your shoulder is still causing you such pain. Please keep us posted on your date for surgery in August.

I can't understand why your sleep doctor wouldn't just write you the script for the machine since she noted that your treatment was going well. Glad to hear your PCP is willing to take care of writing you prescriptions for what you need.

I really missed you while you were "MIA". I know you were on a very worthwhile project, giving it your all.

So glad you've come back to us!

Love,

Jersey Girl

[Muse-Inc]

Welcome back!!! Good to hear the ASV is working well and the new PCP is a keeper sorta compensates for the shoulder challenge.

[Kiralynx]

BB,

Good to see you! I was wondering how you were doing with your ASV... and yeah I understand how things can invade your sleep.

<wry grin> In my case, it's That D@mn Beagle who is still trying to steal my mask. Right off my face! Shadow and Sunny Longhair Dachshund have never pulled that stunt. The Beagle sleeps in her crate at night, now. She's cute and loving, but....

Has your new PCP written you a script for the ASV yet?

[BleepingBeauty]

So glad to see you here.

Thanks, Jaylee! Hope you've had a great birthday, and I like your new avatar pic.

Dear BB,

So sorry to hear that your shoulder is still causing you such pain. Please keep us posted on your date for surgery in August.

I can't understand why your sleep doctor wouldn't just write you the script for the machine since she noted that your treatment was going well. Glad to hear your PCP is willing to take care of writing you prescriptions for what you need.

I really missed you while you were "MIA". I know you were on a very worthwhile project, giving it your all.

So glad you've come back to us!

Love,

Jersey Girl

Thanks, JG. The left shoulder has gotten worse since the right one was fixed last November. Having to use my left arm exclusively for awhile just exacerbated the existing frayed bicep tendon problem, and it's now gotten to the point of no return, pain-wise. The surgery's scheduled for August 11th, and I'm looking forward to it (although I really hate the aftermath of anesthesia and am dreading taking the pain meds again). But it'll be worth it in the end.

I don't understand my sleep doc's reasoning, either. But since the message was being relayed by the assistant, I didn't get an answer when I asked why the data (and my own statements about how I feel now) wasn't enough proof for her. But with the new PCP on-board with my xPAP needs, I no longer care.

Welcome back!!! Good to hear the ASV is working well and the new PCP is a keeper sorta compensates for the shoulder challenge.

Thanks, Muse! Yep, having a PCP I can rely on makes me feel better about everything.

BB,

Good to see you! I was wondering how you were doing with your ASV... and yeah I understand how things can invade your sleep.

<wry grin> In my case, it's That D@mn Beagle who is still trying to steal my mask. Right off my face! Shadow and Sunny Longhair Dachshund have never pulled that stunt. The Beagle sleeps in her crate at night, now. She's cute and loving, but....

Has your new PCP written you a script for the ASV yet?

Hi, Kira. Glad to hear you've found a solution to the Beagle problem.

Actually, I haven't had to ask the PCP for a script yet. I'd been continually searching CL for a backup ASV since I realized that this is the machine for me. And, as my incredible luck with CL would have it, I found another one with very low hours on it a few weeks ago, and I purchased it. So I'm all set for now, machine-wise. Woot!

P.S. I was happy to read your most recent post in your Test Results thread. Congrats!

[Pad A Cheek]

Hey Bleeping Beauty,
So glad to have you back here on the forum. We missed you.
I do hope your shoulder will heal quickly after your surgery and you will feel like a brand new person when all is said and done.
Thanks for all the good things you do.

Karen

[KatieW]

Glad to see your post, Bleeping Beauty. I've missed you.

[tattooyu]

BB's back! I'm so glad the ASV is working for you. I'm sure it feels great to finally sleep well.

[BleepingBeauty]

Hi, Karen, Katie and Kenny!

Karen, I was always happy to see you on the other site, and you sure did ensure that my birthday was a great one! Thanks for sharing that whole experience with me.

Katie, it's nice to see you again, too! Hope your therapy is continuing to go well. Are you still in AZ, or have you returned to Washington, where the summer weather is far more tolerable?

Kenny, I'm happy to read of the excitement in your life right now! Like everyone else here, I'm waiting impatiently for the good word on your impending family expansion! Hope all goes very smoothly for you and your wife as you welcome a precious new baby boy into the world.

Yep, I love my ASV so much that I bought another one a few weeks ago! I don't ever want to be without this kind of therapy. Should anything happen to my ASV to necessitate it going back to Respironics for repair, my DME would offer me an M Series Plus as a loaner (which is what their records show as the machine I have).

But going back to that mode of therapy after enjoying the good sleep I get with the ASV would be like having to drive a Yugo while my Maserati is in the shop. It's NOT happening!

[KatieW]

Katie, it's nice to see you again, too! Hope your therapy is continuing to go well. Are you still in AZ, or have you returned to Washington, where the summer weather is far more tolerable?

Yes, my therapy is going well. Am into my 8th month now. Really glad I made the switch to the S9, which solved my rain out issues. We are back in WA until Oct...and summer hasn't started yet.

[DoriC]

Hi BB, so glad you're back with us! We benefited so much from all the good advice you shared with the forum.

[SleepingUgly]

Hi BB,

Glad you're back!

Why do you dread taking pain medication? I was worried about it because I have a history of nausea with Percoset, and if I throw up too much, I'll rip the sutures in my throat. I was given a new pain med, Nucynta, which supposedly is less nauseating. I also had the scapolomine patch from just before the surgery until the next day. I think it made me dizzy, and definitely caused dry eyes and mouth. Of course I don't know if it was the reason I didn't get nauseous from the pain meds or anesthesia, but if it did, it was well worth the side effects. My vision is still not quite back to normal, but seems to be improving (it's been about 13 hours since I removed the patch). Anyway, maybe you could look into some of these medication options before your surgery.

SU

[Kiralynx]

Hi, Kira. Glad to hear you've found a solution to the Beagle problem.

Actually, I haven't had to ask the PCP for a script yet. I'd been continually searching CL for a backup ASV since I realized that this is the machine for me. And, as my incredible luck with CL would have it, I found another one with very low hours on it a few weeks ago, and I purchased it. So I'm all set for now, machine-wise. Woot!

P.S. I was happy to read your most recent post in your Test Results thread. Congrats!

Well, I don't know that we've found a SOLUTION to the beagle problem yet, other than her growing out of being a puppy.

I am so glad you have a back up ASV! That's why I was glad to get my back-up, 'cause I don't trust my DME to have an ASV on hand if anything happens to mine! BUt you know, that's be a good reason to have a script on file with them... then they couldn't squawk about the wrong machine!

Yeah, one more marker down....

[BleepingBeauty]

Yes, my therapy is going well. Am into my 8th month now. Really glad I made the switch to the S9, which solved my rain out issues. We are back in WA until Oct...and summer hasn't started yet.

Glad to hear you're doing well, Katie. Sorry you're not enjoying good weather in WA, but be glad you're not in AZ right now. It's pretty freakin' hot!

Hi BB, so glad you're back with us! We benefited so much from all the good advice you shared with the forum.

Thanks, Dori! I'm glad to be back, too. And I was SO happy to read in Kenny's thread that your new grandbaby is here! Congrats to you and your family on the arrival of Scarlett Rose!

Hi BB,

Glad you're back!

And *I'm* glad that *you're* back, SU! Nice to "see" ya.

Why do you dread taking pain medication? I was worried about it because I have a history of nausea with Percoset, and if I throw up too much, I'll rip the sutures in my throat. I was given a new pain med, Nucynta, which supposedly is less nauseating. I also had the scapolomine patch from just before the surgery until the next day. I think it made me dizzy, and definitely caused dry eyes and mouth. Of course I don't know if it was the reason I didn't get nauseous from the pain meds or anesthesia, but if it did, it was well worth the side effects. My vision is still not quite back to normal, but seems to be improving (it's been about 13 hours since I removed the patch). Anyway, maybe you could look into some of these medication options before your surgery.

SU

I hate anesthesia for the length of time it takes to wear off. And the nasty side-effect that I experience is stealthy; I don't feel physically nauseous (and I'm starving by the time I get home and *can* eat), but when I take just one bite, I vomit immediately. Don't even get to swallow. With heavy-duty pain meds (like the kind you're given after surgery), it's all-out nausea. I would rather just deal with the pain.

I did take the pain med I was prescribed after my right-shoulder surgery in November (Hydrocodone, if memory serves), and it did take the edge off; but I hated how I felt, otherwise. I never actually vomited from it, but my stomach and my head felt all "oogie." I found I could more easily deal with the unappealing side effects by taking the meds only at night (before bed, and again when I woke up during the night with discomfort). During the day, ice packs sufficed.

I'm planning to ask for something different with this next surgery and will talk with the surgeon about it during my pre-op visit with him. I'll mention the Nucynta and see what he says. Thanks!

Well, I don't know that we've found a SOLUTION to the beagle problem yet, other than her growing out of being a puppy.

Well, my dog's almost 6 now, and he still has his puppy moments. But I'm glad she's not able to snatch your mask off your face for the time being. LOL

I am so glad you have a back up ASV! That's why I was glad to get my back-up, 'cause I don't trust my DME to have an ASV on hand if anything happens to mine! BUt you know, that's be a good reason to have a script on file with them... then they couldn't squawk about the wrong machine!

I'm glad I have a backup now, too. And although your point is well taken about having a script on file with the DME, I'm in no rush to deal with them on a matter like this anytime soon. Since they're not being asked to provide me with an ASV, having an ASV script on file would just confuse them, and that's all I need. They're confused enough as it is.

I'll be seeing the new PCP again before my shoulder surgery and will ask for the ASV script then, just for the peace of mind I'll gain by having it on-hand.