Tuesday, July 21, 2015

Admitting Defeat... So I Can Get Some Sleep

I've had several requests for an APAP/apnea update, which is understandable, since I know I left you guys on a pretty depressing note last month. (Sorry 'bout that.)

I didn't have much new to report, though; it was the same struggle every night, trying to get any sleep at all with that blasted mask on. I kept at it, though! I even brought it with me for overnight trips. I'd put it on as soon as I went to bed, knowing it'd be another 2-3 hours before I could fall asleep, but figuring that was time to further acclimate to the machine.

I tried both a full-face and a nasal pillow style mask, eventually deciding the nose one was less painful. It made my nostrils and sides of my face so dry and itchy I eventually started to peel, so I had to slather on enough moisturizer every night to feel perpetually slimy.

I was dry because my APAP didn't have a humidifier. We were told that would be more comfortable, though, so John was doing his darndest to get me one. This led to a 6-week "Who's On First?" routine with our insurance company, sleep clinic, and equipment provider. Two of those 3 never answered their phones, and didn't know they even HAD fax machines. When the doctor sent over my prescription (because, believe it or not, you need a separate script just for the water tank), she called the humidifier a "humidifier tank." So the provider sent us only the tank, not the whole humidifier.

It was hilarious, in a really aggravating kind of way.

Eventually John gave up on phones and faxes and started just showing up in person to the equipment provider office. This worked great: after only 6 weeks of effort, I had a humidifier!

... that didn't fit my machine.

For further hilarity, 2 days ago we received a rather eye-watering bill from the equipment provider, because our insurance had declared - wait for it - that they had no record of our ever being members.

Someday I'm going to write a poem to the modern health care system. It will consist entirely of four-letter-words.

Anyway, the reason time was such an issue was that you're only given a 2 month "trial period" with an APAP or CPAP machine. If, at the end of that period, you're not using it for at least 4 hours every night, the insurance company will charge you for it. And there's no cheating; the CPAP itself monitors your usage, and tells all.

At my one month appointment, I was only hitting the required numbers about 75% of the time - and almost all of that time I was awake. I wasn't actually sleeping with the mask on much at all. It took me 2-3 hours to doze off each night, only to wake - in misery- between 5 minutes and 2 hours later. Sometimes I'd try again, but most nights I ripped the thing off.

Since I wasn't lasting long with the machine, I got a bed wedge pillow to make it more comfortable sleeping sitting up. (This can help keep the airway open with apnea.)

To keep from sliding DOWN the bed wedge, I found it helped to stick a pillow under my knees.

Then I started watching cartoons on my phone in bed, to give myself more time with the mask on, and maybe to help lull me to sleep.

So picture this: Me, propped up on a giant bed wedge & pillow, with another pillow under my knees, sheets on top, and a third bed pillow on my stomach, propping up my phone. On my head I'm wearing a nasal mask with two head straps and a long flexible tube snaking over the side of the bed. Over all that I'm wearing headphones.

I was like some slouchy Borg queen, ensconced in her bed linen nest.

Poor John couldn't even get near me, and since I felt like I had to wear the mask as much as I could while I was awake, he'd often come to bed to find me already propped up and plugged in, which took a severe toll on snugglin' time.

The doctor asked me if I wanted to quit at my one-month check-in, but since I STILL didn't have the humidifier at that point, I told her I wanted to keep trying. In those four weeks I'd only managed a single half-night of sleep with the mask on, so there was no way to know yet if it was helping or not. "Maybe a humidifier is the missing key," I told her. She agreed, and wrote yet another humidifier prescription for our reading-comprehension-challenged equipment provider.

The moment of truth came at just over the week 6 mark, when John strode victoriously through the front door, bearing the fruit of all his labor: a second humidifier - and this time one that actually fit my machine.

That night we read all the instructions, washed it, filled it with distilled water, and plugged me in. This is it, I thought. Finally, I'm going to be comfortable, and last the whole night with this mask! Best sleep of my life, HERE I COME.

Now, I should mention that a CPAP machine doesn't feel good; it's just good for you. Like exercise, or letting your boss win an argument. In fact, the only positive physical sensation of a CPAP is the cool air it sends on your nose/face. It feels very fresh, and helps make up for the strong plastic smell.


Attach a humidifier, though, and that cool, plastic-smelling air is replaced by muggy, dank, plastic-smelling air. You know how you breathe on your hands to warm them up in the winter?  Imagine someone doing that into a tube... and then you take that tube... and stick it up your nose.

What I'm saying is, the humidifier made it so, so much worse.

The air was hot, thick, and hard to breathe - and I say this as a Floridian who wades through pea-soup level humidity on a daily basis. Plus the contrast of having cool air on every other part of my face completely futzed with my brain, so I found myself trying to breath through my mouth.

Funny thing about trying to breath through your mouth with an APAP nasal mask on: you can't. The airway constricts in the back of your throat, closing it off and making you choke a little and potentially panic a lot, if you're, say, half-asleep and not thinking straight.

I lasted a few hours with the humidifier.

The next day I gave up.

Yes, I know it's bad. I know I'm letting myself down, and maybe even some of you. All I can say is, I really did try.

On the plus side, my doctor tells me my oxygen levels don't drop while I'm asleep, meaning I'm not in any danger of brain damage or heart issues. That's why she asked me if I wanted to quit; my apnea isn't so severe that I have to use this machine. I can try other things.

So last week I packed up the APAP and all its wires and tubing, and chucked the bed wedge into the closet. I try to sleep on my side. I've slept a little better, though of course not great. I'm just back to square one.

Looking to the positives, I feel like my Hashimoto's treatment is working, and I'm told that can help significantly with sleep apnea. I get my most recent test results tomorrow, which will tell us how far I've come and what adjustments my meds need. Right now my body temperature is a roller coaster, but since I've always been cold, I can tell the heat spikes mean something is happening. Plus some days I actually *want* to walk on the treadmill desk, and I feel more alert. So while I don't think I'm there yet, I'm still pretty encouraged.
More good news: the last few weeks I've doubled my dose of probiotics, and - knock on wood - I've only had the barest hint of free-floating panic since. I went on the Seuss ride again at Universal last week, and since John and I were with a friend, I was distracted and happy and didn't feel a SINGLE twinge of anxiety. Not one! I... I can't tell you guys how relieved and happy that makes me. I want to suck up all that calm and solidness and normality and just roll around in it for ever and ever. And then go on the E.T. ride. Dangit. (Still working up to that... but someday?)

After my doctor's appointment tomorrow, John and I get to do something new: we're having dinner in Cinderella's castle with two dear friends. (WOOT!) John's never been, and I haven't seen it since I was little! So, yeah, excited. And after the past 6 weeks, I think we're both ready to celebrate a little. Even the failures.



PS - Ah, how could I forget Lily? You'd rather hear about her, anyway, right? ;)



Lily's post radiation checkup was great: she's officially gone from hyperthyroid to hypothyroid, which was the intention, and should improve over the coming months. She's put on a whole pound, now weighing just over 10, and is filling out beautifully. That bad problem spot on her back is only this week starting to grow hair again, though; it's been a long, frustrating journey getting it to heal. Fingers crossed that was our last over-grooming hurdle, and it's smooth, purr-filled sailing from here!

71 comments:

  1. My husband has severe apnea. And we tried every style of CPAP our dme provider could dream up to no avail. He would rip the Damn thing off in his sleep without realizing he was doing it. And then would be so tired the next day from fighting with it, just to fall asleep, that he would nap on the couch, away from the machine. So his pulmonologist suggested an oral appliance. It was pricey (covered by our insurance but still $400 OOP). But he keeps it in, no tubes, no mask, no plug. We can snuggle or watch tv with it on. Easy to clean, store and pack for overnight trips.

    ReplyDelete
  2. Oh girl. I'm sorry that you are going through all of this right now. Bah, not sleeping is no fun. I know that you said going gluten free didn't change things but I would give that another chance. I don't normally eat a ton of wheat and grains but I have found that when I do have it, it does affect my sleep and my anxiety. I have to be really careful how much I eat or else I'm up all night. I had to give up caffeine as well. I used to be able to have all this stuff but now I cannot. Initially I was bummed out but now I realize how much better I feel when I don't eat it.

    ReplyDelete
  3. In the case of the Misadventures of APAP Contraption: Part 1(Peeling Nose) and Part 2(Oh yes! Humidifier! Oh noes! Humidifier!), I'd call your experience a success because you found out that you don't need to sleep with it. A miserable month, that's for sure, but you hopefully get the rest of your life without it. It's a bit like eating a piece of liver from the pot of liver goulash to figure out you hate liver and now you never have to eat liver again. (This is my real life experience. And yes, I need a hug.)

    Congrats to Lily too! Our cat Daisy has hyperthyroid but owing to a long list of can'ts, she's stuck with medication, which is always getting readjusted. Lily is looking gorgeous and a one pound gain is impressive.

    ReplyDelete
  4. Wow, Jen, I'm sorry that this has been such a struggle! Sure does sound like you guys are ready for a little celebration and fun after all that. (hope we get a few pics of your magical dinner!) And don't be too discouraged that the machine didn't work/help. At least you know that you don't really need it if your oxygen levels are ok. Here's hoping that you find something else that works better so you can get a good restful sleep again! I don't know if it would help or not, but have you ever heard of or looked into Protandim? It's an all-natural supplement that reduces oxidative stress. Might be something to check into; I know they have a ton of success stories of it helping people with various things. Here's a link to their site if you're interested. protandim

    ReplyDelete
  5. Hey - kudos to you for trying the CPAP for as long as you did. Sorry you still are not sleeping. And so very gald to hear Lily is doing better. LOVE her eyes! Hope you really enjoy your dinner at the castle.

    ReplyDelete
  6. Sorry the CPAP didn't work for you. I took to mine like a fish to water - my sleep study was the best sleep I'd had in years! But a lot of people just can't tolerate them.

    Do you mind if I ask what probiotics you're using?

    Also, yay Lily!!! \o/

    ReplyDelete
    Replies
    1. Re: probiotics - I had to go look! It's Garden of Life Raw Probiotics (Women's formula), and make sure wherever you get them has them shipped in a refrigerated truck *and* keeps them in a fridge in store, too. We buy mine at Vitamin Shoppe, and it's about $45 per bottle of 60 capsules.

      Delete
    2. Thank you!! I was also wondering. - Michelle E

      Delete
  7. Jen, it's never a failure to try something that didn't work. You tried, which is more than most can say (me included!), and it is of no fault of yours that it didn't pan out! Keep being brave and trying things. Failure isn't a reflection on you, it's a fact of life.
    Kisses.

    ReplyDelete
  8. Boo for the CPAP drama. But yay for making the best decision for yourself. And double YAY for Lily. She is beyond gorgeous. Those eyes. LOVE.

    ReplyDelete
  9. Yep...been there done that. I truly thought getting used to the APAP would not be a problem. My husband loves his CPAP. Several people told me how great I was going to feel. I've always believed in mind over matter, I can do anything if I need to do it. Well, crap. Totally could not do the APAP machine at all. You lasted much longer than I did. I just could not tolerate that thing on my face. So you have complete sympathy and empathy from me. You also have my admiration-you really tried hard and stuck with it. That's great that you have other treatment plans. I was pretty much told use the machine or die. I had to say I understood that I was choosing the likelihood of Sudden Death by not trying to use the machine anymore. Anyway, it was kind of nice hearing someone else say they cannot abide that machine :) and it is really nice to hear of Lily's recovery!

    ReplyDelete
  10. Well, good for you for trying it out and being as persistent as you were. It didn't work, so on to the next thing. At least you gave it the old college try (as my mom would say).
    Thanks for the update on pretty little Lily. Those eyes!!

    ReplyDelete
  11. Please don't feel bad for giving up on the cpap. My husband uses it with the humidifier (and has for a few years) and he still hates it. It's always leaking air and waking me up at night. I half wish he'd give it up, but it keeps him from choke-gasping his way through the night, so... Anyway, good news with the Hashimotos and with Lily!

    ReplyDelete
  12. I don't follow this blog that closely, so maybe I've missed something. Both Jen and Lily have thyroid problems? How can this be?

    ReplyDelete
    Replies
    1. Ha, yes, isn't it nuts? I have Hashimoto's, which causes low thyroid, and Lily had high thyroid (or hyperthyroidism) which is common in older cats. Then Lily had radiation treatment, which pretty much kills thyroid function, so now she's low like me.

      They say people and their pets start to resemble each other... I guess we've just taken it to the next level. ;)

      Delete
  13. thanks for the update. love to you and sweet lily.

    ReplyDelete
  14. I don't know the exact kind of your apnea, but for one some people can improve with muscle training (in that case, the tongue muscle iirc). If you have that kind of apnea (the "blocking" one as opposed to cerebral one? sorry, no native speaker) this might be a route to check out.
    Best wishes!

    ReplyDelete
  15. Jen, you have let NO ONE down. You stuck with it long enough to be fair and you found out it doesn't work for you. As Frances Mary D'Andrea says, on to the next thing. Much love to you and John and Lily and Tonks!

    ReplyDelete
  16. So...I probably shouldn't have read this post the afternoon before I check into the hospital for my sleep study. :P

    Glad to hear about the probiotics=less anxiety and that Lily is healing. Thank you for being so open with your readers. It's really encouraging to hear news from others who are living with "invisible" disabilities.

    ReplyDelete
  17. If you haven't returned your machine yet, and want to try one more thing:

    You SHOULD be able to dial down the humidity on the machine. Mine has a setting dial of, I think, 0 - 5 or 1 - 5, I forget which. You can also wrap the hose to insulate it and that will help with any condensation and mugginess from temperature differences between the hose and the air surrounding it.

    ReplyDelete
  18. "Someday I'm going to write a poem to the modern health care system. It will consist entirely of four-letter-words."

    I strongly recommend the final scene from the second episode of season 1 of Episodes, when Tamsin Greig *completely* loses it with a recalcitrant guard of their gated community. It's ad-libbed and utterly satisfying, as well as 100% NSFW.

    ReplyDelete
  19. Thanks for the update. I'm really, really glad things are looking up in some categories. I don't know if you're the kind of person who cares, but I'll do my best to remember to pray for you and Lily. Thanks again for everything you've give us, even when things are rough.

    ReplyDelete
  20. Yay for Lily! Every picture is more beautiful than the last. Sigh...

    And double-yay for you and john -- for sticking it out with both the machine and the *&%)*&)#$ medical establishment. So sorry to hear that you had to go through all that malarkey. Now go snuggle! ;)

    -Zippy

    ReplyDelete
  21. This is a success! You know what isn't working so you can concentrate on looking forward to find the next thing. I guess sometimes in cases like that (what do I do now sort of feelings) its really hard, but so long as you are trying to figure it out and haven't given in then you are doing awesome!

    I have a friend that has a shorthair cat that over grooms something chronic, he'll be half naked sometimes and its related to anxiety. He's also asthmatic and has a little baby sized nebuliser... anyway! She knits little cat jerseys for him so that he can't groom (She will take it off for a short period so that he can, and then its back on), but I guess living in the heat wool probably wouldn't be a good idea. You could try cotton instead?

    ReplyDelete
  22. So happy that Lily is doing better. Here's to continued success for her. And I'm calling your CPAP, APAP saga a win. You found out you don't really need it. You just lost a month of your life you'll never get back. Have fun at Cindy's Castle dinner!

    ReplyDelete
  23. I guess I should count myself lucky as I started using my CPAP last week and have managed 5 hours a night, well after I made slip covers for the strap that made my face break out in an allergic rash. Once I got those on the strap no longer touched my face and I was able to fall right to sleep. Thankfully I take a lot of medication for other issues and they tend to knock me out within 5 mins of taking them, of course they do little to nothing for keeping me asleep so I was hopeful that the CPAP would help. I am so happy it did, though from all the horror stories I heard I was sure I would never be able to do it.

    I have severe claustrophobia and the pillows are the ONLY mask I could bare and even that leaves me panicked when I forget I can't cough, talk or drink with it on. But I am working on it. I am always sadden to hear about the insurance issues you folk down there (I am in Canada) have to deal with. If I had to actually pay for my machine I would not have been able to afford it, but lucky for us it is all covered, including the humidifier part. I wonder if they had the setting on yours too high, mine was still a cool air but I wake up and my nasal passages are not dry or anything.

    I wish you the best of luck in finding alternatives and thank you as always for being an inspiration even when things do not go as planned.

    ReplyDelete
  24. Jen, that sounds horrible. I don't blame you for quitting. Sometimes things just Don't Work For Us, no matter how "good" they're supposed to be "for" you/others. And anytime someone rants about their health insurance providers it always reminds me of that scene from "As Good As It Gets" when Carol (Helen Hunt) explodes with profanity after she finds out that allergy testing would help her son but her insurance won't cover it. Such a great scene! I hope you can find something that gives you relief. And that is such great news about your anxiety, and Lily. So glad to hear it!

    ReplyDelete
  25. My husband was just diagnosed with severe apnea (no surprise to me) and is waiting now for a machine, which is taking much longer than we expected. He said he slept very well with it during the sleep test, so crossing our fingers that it helps him get some rest at night so he'll stop falling asleep every time he gets still during the day and feeling so tired and draggy when he's awake!

    As for our health care system, we have two "kids" who are MDs, and both of them support a national health care system, since neither went into medicine to get wealthy and both hate that evil, bloated, profits-in-the-denials insurance companies hold the health of our middle class in their greedy hands (deep breath - must climb down from soap box). Anyway, I hope you find solutions for all your issues soon -- as much joy as you bring to the readers of your blogs, you deserve it for yourself!

    ReplyDelete
  26. I am really sorry that it didn't work out, but KUDOS FOR BEING WILLING TO STOP!
    Also, I'm glad to read the Lily update. :)

    ReplyDelete
  27. I'm sorry it didn't work out for you, but at least you tried. Enjoy Cinderella's Castle. I've never eaten there, either. I have to admit that my husband's CPAP has saved our marriage, as I get very cranky when I get woken up by snoring multiple times every night ;-)

    I'm glad Lily is doing better. She's got the most beautiful blue eyes!

    ReplyDelete
  28. My husband hates the humidifier too; he felt like he was drowning. He does like the CPAP, though; it lets him dream. He was stopping breathing about 88 times an hour pre-machine!
    Your comments about gastric health have inspired me to investigate further. I developed a serious anxiety problem in relation to closed spaces/crowds a few years ago. It happened out of the blue. As I dealt with it for a few years, we later found out my appendix had ruptured and my body had built tissue around it. Now that all of the stuff was surgically removed and I've healed, I find that my anxiety has considerably lessened.

    ReplyDelete
    Replies
    1. That's fascinating about your appendix! Er, and sucky, of course. :/ I'd be curious to see how you responded to a high-quality probiotic; maybe that would lessen the anxiety even more? (Then again, after a while some of that fear becomes learned, so I'm sure you can only treat the physical symptoms so far. I'm still sorting out how much of my own anxiety is my body's brokenness and how much is my mind *expecting* to panic.)

      Delete
    2. Jen, thank you for articulating the struggle to overcome a learned habit. I had a fairly traumatic childhood and this blog has always been such an inspiration to better myself. If I ever get brave enough to face the needle, I'm going to get a tattoo with the letters "I.S.O". It means "In Spite Of" because in spite of everything I've gone through, and how stacked the deck was against me, I turned out to be pretty awesome and I love my life. I can honestly say a good chunk me finding happiness is due to reading this blog and all the comments everyone leaves. Thank you for building this community. <3

      Delete
  29. Hey jen, Im sorry the CPAP/APAP didn't work :\ but you didnt let anyone down as far as I am concerned :). If i had similar problems with a Cpap i dont think i would last as long as you did. And I do have untreated sleep apnea (im in the middle of a life/job change and my pulmonologist rescheduled on me another month out grr). It is so good to read about your progressing with other areas! YAY for rides n.n. It is also good to hear about lilly! you go enjoy dinner and friends..
    "Have fun stormin da castle!!"

    ReplyDelete
  30. So glad to hear about Lilly, that gorgeous fluffy girl! I hope she can continue on that upward trend.
    I have always had a love/hate relationship with my CPAP. I can now go several days without it, but, eventually, I have to put it back on. In the past year my record for keeping it on was 3 hours, and I was really, REALLY tired that night. Sigh.
    And do not even get me started on medical providers! My husband is disabled, yet he has a full time job. Being on the phone, arguing with those &#^@% and trying to get them to do what they are supposed to. Poem? I could write a volume of encyclopedias!!! Hope all continues to improve with you, too, Jen. Bless you.
    Maureen S

    ReplyDelete
  31. Sorry to hear of your struggles, Jen - the CPAP was the best thing that happened to me. During my sleep study they found I was "waking" up to 55-60 times an hour - I was dragging all the time, and even fell asleep at my computer at work from time to time. I've been using it successfully for 15 years now. Prior to that I had a series of five grand mal seizures - all of them in my sleep. My neurologist now suspects that they may have been related to sleep and oxygen deprivation - haven't had another one since I started using my CPAP. I was never getting into restorative REM sleep.

    I have heard of people have success with the oral appliance (no hose or machine necessary). That would be particularly nice if/when you travel.

    Glad to hear you're doing better and that your beautiful cat has responded to treatment. My thoughts are with you. Hope you can find a good solution!

    ReplyDelete
  32. I'm glad you figured out your cpap. Even if it means you quit it. I had one for almost a year and could never get fully used to it and then was realizing a coloration to using it and getting a sinus infection after 2 to 3 weeks of use. I went through the whole bit of your humidifier is too high, it is too low, it's just right you just need to put different water in it. . . To realizing I was getting more sleep and feeling better in the mornings if I didn't use it. Plus I didn't have that disgusting warm water dripping down my face at night. YUCK! I think quitting is a good option if you've given your best and don't really have to do it anyways. :)

    ReplyDelete
    Replies
    1. Hey, Tenney is my maiden name! I'm always fascinated to find another one "in the wild." LOL

      Delete
  33. I'm so glad I'm not the only one who couldn't do a CPAP. I swear I've tried on several occasions, I even had a humidifier, but I either could not fall asleep or would rip it off at some point in the night. So many people told me I just had to stick with it and I'd get used to it, but I never could.

    Eventually I just started sleeping in a reclined position. I now have a grandma adjustable bed and it helps tremendously. I've also slept in a recliner before.

    ReplyDelete
  34. Sounds like you already have written a four letter word free verse poem about insurance companies.
    Since nobody in my family can tolerate CPAP machines, we feel for you. Side sleeping is good if it stops the apnea. It's what I do with mine.
    Lily looks as lovely as ever and is probably happy to be out of sleepwear.

    ReplyDelete
  35. I'm really sorry that you have to go through all that headache! I know how bad apnea can be, and the toll it plays on the rest of your days. It's so hard to function without a decent night's sleep!
    I recently found this on indiegogo, and of course I thought of you as I was reading your post. https://www.indiegogo.com/projects/airing-the-first-hoseless-maskless-micro-cpap#/story
    Maybe it would work better for you than a full face mask? I knwo it would work better for me.
    Sending lots of positive vibes your way. (And I;m so happy to hear about Lily, too! :) )

    ReplyDelete
    Replies
    1. The problem I would think there is that it won't be shipping until middle of the year 2017. And that's assuming they get FDA clearance and insurance approval. And that I think I read that each thing is like a one time use.

      Delete
  36. Jen, I am so sorry to hear about your struggles, but I'm glad that you are at least only back and square one and not back in the negative number squares.
    I too have thyroid issues, I have hypothyroidism and have struggled with it for about 11 years. It's only been the last 2 years that I feel I have gotten a handle on it and that my health is on the right track. Of course getting to this point involved a complete life-style over hall, but in the last 2 years I've lost 90lbs and my thyroid levels (along with all my other blood work levels) are perfect and steady. I exercise regularly and eat as best as I can (I'm never going to give up beer or desserts!)
    Eventually you will find what works for you.
    I'm very happy that Lily is doing better. She's such a beautiful cat.

    ReplyDelete
  37. I broke my nose when I was 2, had to have nasal reconstruction at age 3 because I completely shattered the cartilage when I broke it, but was too young for the repair. Since then (I'm 27 now) I've always had a little bit of breathing issues, mostly when I'm sick or sleeping. I've always slept on 2-3 or more pillows to prop my head and upper body up to make breathing easier. My grandmother had always slept on a wedge pillow (Just a triangle shape of styrofoam with a cloth covering) and when she died I took that and replaced most of my pillows with it. Now I put my 1 regular pillow on that and sleep, it's such a beautiful thing for my breathing when I sleep. I would reccomend it if you have breathing issues.

    ReplyDelete
    Replies
    1. That sounds like the same wedge pillow I bought, and I agree it's SUPER comfy. I'll probably still use it sometimes; the only drawback is it's hard to switch to your side on it. (Well, that, and John doesn't like having a wall of foam between us. Ha!)

      Delete
  38. One other thing I find helpful as an apnea sufferer is an adjustable bed. kinda a pricey investment, but I LOVE mine. I have a lot of orthopedic issues besides, and my adjustable bed has been a god-send. Find it hard to sleep in other bed besides my own. Because of knee and back surgeries, i can't switch sleeping positions easily so this give me great relief.

    ReplyDelete
  39. Good news about Lily, and bravo for chucking that CPAP monstrosity. If your oxygen levels weren't dropping, I can't imagine why anyone thought it was remotely appropriate for you to try that. One of those would give me chronic anxiety and I don't even HAVE anxiety.

    ReplyDelete
    Replies
    1. I wondered about that, too, since I don't remember the first doctor mentioning my oxygen levels at all; just saying I have moderate apnea, which the machine would help.

      Delete
  40. You might want to follow this on Facebook - https://www.facebook.com/airingCPAP. Still in funding/development phases, but I so badly want them to come to market!

    ReplyDelete
  41. I'm really sorry that you have to go through all that headache! I know how bad apnea can be, and the toll it plays on the rest of your days. It's so hard to function without a decent night's sleep!
    I recently found this on indiegogo, and of course I thought of you as I was reading your post. https://www.indiegogo.com/projects/airing-the-first-hoseless-maskless-micro-cpap#/story
    Maybe it would work better for you than a full face mask? I knwo it would work better for me.
    Sending lots of positive vibes your way. (And I;m so happy to hear about Lily, too! :) )

    ReplyDelete
  42. Hope dinner in Cinderella's castle was fun and delicious, and really hope you got some photos to share with us. Can't wait to read about it!

    So glad that your anxiety is better lately, and so happy that Lily is doing well. Sucks that dealing with the APAP and the medical/insurance establishment was such a nightmare for you and John, but it seems like that's just the way things are, at least in my experience. Whenever I have a medical experience that isn't horrible, I'm pretty shocked.

    Hope you guys will be making up for all that lost snuggle time now that you're free of the mask and hoses! Herh herh herh! ;-)

    Thanks for sharing your life with us!

    KW

    ReplyDelete
  43. I also have apnea, and the sleep specialist I went to recommended a CPAP machine, which I refused just because he was such a jerk about it. Instead, I bought an over-the-counter mandibular advancement device - basically a plastic mouthpiece that pulls my jaw forward a little bit, opening my airway. It's not perfect, but it helps a lot, and it was cheap enough that I just paid for it myself rather than involve insurance.

    I will say that I spit it out in my sleep the first few nights, but after that I had no issues. As a side benefit, my dentist tells me that she can tell that I no longer grind my teeth in my sleep - I presume that's because I chomp on the mouthpiece instead, but I can't tell for sure, because I'm always asleep.

    Anyway, I'm not a doctor, and I don't know whether such a thing would help for you. I won't even link to the specific one I use, but if you use your favorite web search and terms like 'stop snoring mouthpiece' you'll find several to choose from. It might be worth a try just to see if it does help you.

    All best with your quest for solid sleep - I know from my own experience that it's frustrating and terrible to miss out.

    ReplyDelete
  44. I found this cordless, hoseless, maskless, battery powered CPAP thingy today on my facebook feed, it was like prefect timing to reading this earlier today... dont know if its an option with all the crazy insurance stuff but thought I would pass it along! Its still in production state but it could be in your future if you continue to have issues.

    http://www.fundairing.com/journal/2015/4/30/introducing-the-worlds-first-hoseless-cordless-maskless-battery-powered-cpap-device

    ReplyDelete
  45. I've been following that with interest, but sadly it won't hit the market 'til 2017.

    ReplyDelete
  46. This is such a positive post, its hard to see any failure in it. Im curious, has anyone here tried a cpap, hated it, and found relief in wearing it with hypnosis? They are really good things *if* you need one. It is a happy thing that you don't, Jenn :)
    The other thing I was going to mention is old wheat varieties, they are delicious and many people find they can eat them happily where they cannot tolerate the new, highly processed flours.
    To your continuing better health!
    (signed) fellow person with anxiety issues

    ReplyDelete
  47. Just chiming in with a sympathetic, "Medical stuff is too complicated, and never works out!" We're STILL trying to get one insurance company to STOP covering us after over a year of not qualifying anymore. You'd think they'd want to stop sending us mail etc.

    ReplyDelete
  48. I definitely agree with some other posts about using a mouth piece. If you ever had a retainer or wore a mouth guard for sports you are already used to how it feels. I found it much easier to sleep when compared to a CPAP machine.

    ReplyDelete
  49. I'm glad to hear Lily's doing better, but sorry to hear the CPAP/APAP didn't work for you. Hopefully you and the doc can come up with a plan to give you some rest soon. Your sense of humor over the hassle and billing had me laughing though. I love the way you kept your sense of humor even when everything about it was frustrating.
    Happy evening out at Cinderella's castle! (I"m so jealous...I've never been inside. Can you take pictures for us?)

    ReplyDelete
  50. How to restore broken relationships and marriage

    Hello to the people of this forum< Am Brooke Campbell from Texas and i can say that am the happiest person on earth since last week with what DR ABULU has done for me , it all started last year October when my fiance left me in Texas and travel to see his parents in Ohio at first him was still calling me and show love even when him was away , but it gets to a point when he no longer gives a shit about me , and i noticed it so when i tried to confront him , he told me that he dose not love me again that he feel like being alone i was shocked and heartbroken when i tried talking he will hang the phone on me i was so heart broken and i was frustrated about this , but on a second thought i was not convince that he was on his right senses so i discuss this with my elder sister who lives in California and she directed me to DR abulu of abuluspiritualtemple@yahoo.com saying that the man has helped her friend in such case before so i said to my self let me tried i contacted this man and explain everything to him and behold dr abulu said to me what am to do and i did exactly what he and he said after three days my fiance will call me and once he calls me i should pick the calls and he gave some other instructions . so i said okay , but to my best surprise on the 7th of November my fiancee called me and started saying on the phone am sorry it was like a dream to me , with this i said i will tell the world of his dr abulu goodness in my life , so if any one is out there and needs help in his or her relationship can also contact him today via

    email abuluspiritualtemple@yahoo.com
    web abuluspiritualtemple.webs.com

    ReplyDelete
  51. I Met a Powerful Spell caster and Psychic from India by name Dr Bully, He is very real, Honest and Genuine.. He helped me get my lover back, there is no bad or negative effect.The Psychic uses white Magic and he helped me get my Lover back, it worked in 2 days.. My lover came back to me, apologized for leaving and now we are back together and as happy as ever… I will encourage and recommend anyone to contact the spell caster and ask him for help.. He does all kinds of spells asides love spells. just tell him your situation and he will help you… you can email him directly on bullytemple@yahoo.com (his Facebook name is Kareem Abhida and his Facebook page is Dr Bully Temple""" he is the answer to your problem..once again the email address is bullytemple@yahoo.com get back your divorced Husband/Wife back now with his help

    ReplyDelete
  52. Oh, great, you have spammers.

    I don't have apnea, but I'm a terrible snorer, so here's a few tips.

    To train yourself to sleep on your side - put a tennis ball on your back (I would tuck mine into the top of my PJs, some people sew a pocket into their pajama top or nightgown). The ball will give you a gentle reminder to turn over - just enought discomfort to turn you over, generally not enough to wake you up.

    I also REALLY recommend this pillow. I'm on my second one, and it helps with the snoring and with back and knee pain as well. It's a bit pricey, but worth every penny, IMO.

    ReplyDelete
  53. It took me 2 months to get used to it and (shhhh) the time I had to verify I was using it, sometimes I would take it off my face but leave the machine on so the insurance would pay. Now it's not too annoying except the times the cats step on the switch and I wake up all stuffy and even incredibly dizzy once. I hope you find something to help. Not sleeping is no fun whatsoever.

    ReplyDelete
  54. Hi i am Lisa Martinez from Tampa Florida. This is a testimony i am about too to share with you all regarding what happened to me after i lost my husband to a woman i called my best friend some years back. It is so hard raising two kids on your own when you don't have a stable job. My husband has always been the bread winner of our family, he was loving but all of a sudden things things changed drastically when i introduced my husband too my best friend (Michelle) i never realized i was casting my own downfall. My husband cheated on me and moved in with my best friend, i loved him so much and i never wanted to be a separated mom, because i want the best for my kids. My kids became so persistent that they are always asking about there dad after 4 years of us been separated, so i explained things to a friend of mine Latoya, she advised me on what to do if i really wanted to get my Ex-husband back. She told me about a Woman she knew in the Western Part Of Africa named Great OLOKUN, that she is a great herbalist who is well renowned in Africa for her mysterious works. She gave her testimony too me and i never believed in black powers, but Latoya was so persistent that i tried it if i really wanted my Ex-husband back, of course i do and my kids was the main reason i gave into it, i asked Latoya about contacting the Great OLOKUN, and she gave me her email and phone contact: (highcheifolokun@gmail.com).. I contacted her with faith, told her my problems and what i wanted she gave me a list of what too provide immediately, i did so and she told me in a week time my husband will come back asking me to forgive him, i doubted and in a week and two days my Ex-husband came asking for forgiveness. CONTACT THE GREAT OLOKUN NOW VIA (highcheifolokun@gmail.com )!!!!!

    ReplyDelete
  55. Hi Jen. Sorry to hear the CPAP didn't work out for you. I had to grin and bear it though, as I have hypopnea, which means I shallow breathe, and my oxygen levels were dipping down to 60% Been using mine for about 7 years now.

    Anyway, I wondered if you had looked into Ehlers Danlos Syndrome. It might explain the hashimoto's, anxiety, apnea and stomach issues. Do you bruise easily too? Anyway, there is no cure for EDS, but at least you have a cause to explain the symptoms and doctors can't keep saying 'but we can't find anything wrong with you'. I'm currently waiting on the genetics clinic to get back to me with an appointment for assessment.

    Anyway, much love from Australia xx

    ReplyDelete
  56. Hi everyone act there.. my name is SHARRON i am from Germany. i will never forget the help DR.zuma render to me in my marital life. i have been married for 5 years now and my husband and i love each other very dearly and deeply. after 3 years of our marriage my husband suddenly change he was having an affair with a lady outside,i praying for divine intervention the thing became more serious.my husband just came home one day he pick up his things and left me and the kids to his mistress outside. i was confuse and i did not no what to do at first. i was searching for help in the internet, i saw so many people sharing testimony on how dr.zuma help them with their relationship problem. i email him and tell him how my husband left me. And he assure me that my husband will be back home within the next 48 hours .To my greatest surprise my husband came home on his knees that i should find a place in my heart to forgive him,i was truly astonished and shocked when my husband knelt down begging for forgiveness and for me to accept him back.. I am really short of expressions, and i don't know how much to convey my appreciation to you dr.zuma you are a God sent to restore broken relationship. And now i am a joyful woman.Email: Via web sit: (http://herbalisthome.webs.com)
    spiritualherbalisthealers@gmail.com

    ReplyDelete
  57. I'm sorry you had to go through all of that, Jen. *HUG* But, now you know and you really gave it ye ol' college try...more than I would have. Some people can do CPAP, and some can't. There's no shame in quitting. Keep doing what you've been doing. :)

    I have to tell you, you've been an inspiration to me. My anxiety isn't nearly as bad, but it can make me no do things out of terror, etc. On July 4, I forced myself to get on a park ride and ride it out, even through I started to get an attack just as we started. (One can't just get off of the Crazy Mouse, you know?)

    And wonderful news about Lily!!

    ReplyDelete
  58. Jen I am so glad to hear Lily is doing well. As for the CPAP machine, sorry it didn't work out. Sounds like you did your best. Let it go... much like these comments above about cheating husbands, physics, and wth?! Heeheee. They gave me a good chuckle and a head shake.

    ReplyDelete
  59. I know exactly how you feel. I went through an unending array of masks and eventually gave up. Apparently, I was allergic to the plastic so they would make my face break out in the most unattractive blistery-looking bumps. That was also when my husband and I first started sleeping apart, since he couldn't stand the sound of the CPAP running. I was able to wear it through the night, but I paid for it in the morning. So I own a useless CPAP machine, gathering dust in the basement. Some day I'll conduct a small ceremony and dispose of its carcass.

    ReplyDelete
  60. Do you also snore? My friend is trying out what she is calling the "tonguesucker" type of device. http://www.getaveo.com/index.aspx and goodmorningsnoresolution.com Maybe keeping your tongue from blocking the airway in the first place would help you to not snore and to not stop breathing. This would be much less invasive to your sleep too. It's cheaper and worth a shot!

    ReplyDelete
  61. i'm sorry the machine didn't work, but i'm glad there are other things you can try.

    and yay for hypo thyroid!

    ReplyDelete

Please be respectful when commenting; dissenting opinions are great, but personal attacks or hateful remarks will be removed. Also, including a link? Then here's your html cheat sheet: <a href="LINK ADDRESS">YOUR TEXT</a>