Friday, June 19, 2015

Getting Used To Disappointment

I'm pretty discouraged today.

I'm also tired and fuzzy-headed, and the thought of doing anything other than slumping here in my office chair is just too darn exhausting.

Admittedly, I had a bad night last night, and the night before that, and the night before that. In fact, I can't remember the last time I slept through the night. I can't remember the last time I felt fully rested.

So that probably doesn't help.

Many months ago John discovered that I stopped breathing during my sleep a lot. It spooked him. I didn't think much of it, but then his sister - who has anxiety like me - told me how she learned she has sleep apnea even though she doesn't snore, and it was contributing to panic and insomnia and daytime fatigue. Once she got a CPAP machine, though, she felt amazing.

That convinced me to give it a try, so we spent the next several weeks arranging an at-home sleep test (which showed I *do* have apnea, yay), and then convincing doctors to prescribe a machine without a follow-up in the expensive overnight lab.

Meanwhile, my nighttime panic was getting worse, or maybe I just noticed it more. I'd wake up feeling like I was choking, heart racing, palms sweaty. This seemed to confirm that apnea was the culprit in my mid-sleep panic attacks.  I'd had those happen off and on for a while, but then they started happening almost every night. Desperate, I began sleeping sitting up, just biding my time until we could get a machine.

Finally, a few weeks ago, after months of insurance run-arounds and 4 different machine providers playing Hot Potato with my prescription, I got an APAP machine.

It's a bit of a blow for any woman, I think, to contemplate wearing a clunky mask and air hoses to bed for the rest of her life. I made so many sarcastic comments while we were picking out the mask ("Ooooh, SEXY") that John got a bit frustrated with me. But he still laughed when I mocked the "For Her" line, whose only differentiating feature are pink headstraps.

 

 Rats. No one told me I had to get matching pajamas.

 
Still, I'll admit I was excited. I couldn't wait to have the best sleep of my life, and to wake up feeling rested and calm. No more panic! Uninterrupted sleep! More energy!

But of course it didn't work that way.

No one told me it would take months to get used to the machine, and that at least half of people prescribed one never do. No one told me it would make the panic worse, and hurt, and feel like subtle torture in the wee hours of the morning, when your face itches and cracks and your breaths feel wrong and irregular and you just want to sleep, please let me sleep, but you can't.

Then, after 3 or 4 hours lying there, you do fall asleep... for about 40 minutes. And you wake up panicking, because something's on your face and you can't breathe and sweet Staypuft has your nose EVER itched this much in your entire life?? Plus now you have to pee.

Repeat that cycle two to four times a night, and that's been my life for the past 2 weeks. Except eventually it gets too much, and I rip the mask off, and sleep fitfully for a few hours before staggering out of bed like a zombie.


Lily is beside me on the desk right now, licking another raw, bloody patch on her back. She won't stop. So I put the inflatable collar on her:


Immediately she turns into The Most Pathetic Creature... In The World. She stares. At me. She tries - and fails - to rest her little head on my mouse hand.

 

She twitches down her back like she's in pain, and then slinks around with her tail on the ground. I can't stand it. So I take the collar off... and we're back to square one.

I'd hoped - perhaps irrationally - that fixing her hyperthyroidism with the radiation would also fix the rest of her occasional over-grooming, but it seems the stress of her clinic stay has brought it back full force.


And finally, after a long month of doing something I never thought I could do: going gluten *and* dairy free - I've had to conclude that the gluten makes no difference to my system. Another hope for better health, more energy, and even clearer skin, dashed.

I did feel better this past month, but it seems that was only from skipping dairy, because of my lactose intolerance. I've been back on gluten for almost a week, though, and have had no ill effects that I can detect. (I suspect some GF folks will tell me it's subtle, or cumulative, or who-knows-what, but I'm not sure I can continue without tangible evidence it actually helps.)

I have mixed feelings on this one: relief, I guess, because it's so much easier to eat this way, but also incredibly disappointed it didn't help. I always figured if I could just manage to try it, if I could ever muster that kind of willpower, then everything would be amazing. Then I did... and it wasn't.

Sucks.

So today I am sad, and discouraged. I'm tired, a little anxious, and not sure what to try next. My mom recommends sleeping pills and a chin strap. John's at the store buying me a couple bottles of Kombucha. The vet is going to give us some ointment for Lily.

Speaking of which, this is my view right now, looking down:


Lily has wedged herself between my belly and the keyboard. I've typed most of this with my arm on her back. I kind of hate to wake her.

At least one of us is getting some sleep.

204 comments:

  1. Have you considered Jackson Galaxy for Lily? I googled "Jackson Galaxy over grooming" and there are videos, tips, and spirit essences. May you find peace knowing how many people love you and wish you well.

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    1. I've used some of his Essences for our stressed-out kitty & they work like a charm. Great suggestion that I second!

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    2. You could also try Bach Flower Remedies. They make one specifically for pets and you may be able to find that one locally.

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  2. I am sorry it is so stressful! I hope you sleep soon but I can think of a few things that might be cheerful--
    1) I feel like that Sleep Apnea mask could TOTALLY be turned amazingly orange and teal and steam-punky something--which might be fun when it starts working. =-)
    and
    2) I know that with both my cats and my dog, they have behavioral changes when I am down/sick. So it could be that Lily is just reacting to your stress, as opposed to showing a behavior that she is will keep up all the time.
    and
    3) If you can figure out the perfect mini-nap time for you, it might make it easier to survive while you acclimate to the mask, AND help to take away some of the psychological stress of "I know I won't be able to sleep tonight . . ." Just experiment and see what works. For me, a 12 minute nap is perfect, for some reason--10 minutes and I am still sleepy; 20 minutes and I am groggy and can barely wake up, but 12 minutes is perfect!
    In the meantime, happy (sleepy) thoughts are coming your way from over here. . .

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  3. Oh Jen, :( I'm so sorry. I too have suffered from hypothryoidism for about a dozen years, and have been following your progress closely. I know your pain. I went gluten free too, did a whole elimination diet for a while, but gluten free, completely for almost 3 years. It never made me feel any better either, so I gave up. I'm still looking for solutions as well. I bought the book you recommended, but haven't read much of it yet. I hope you figure something out. I know how frustrating and scary it can feel. I hope Lily gets better too. She makes me so sad, poor little thing. :(

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  4. I started taking some vitamins/supplements to combat a weak adrenal gland to help with my anxiety, and it was night and day for me. I was having a panic attack every three days or so, and having trouble falling asleep. When I'm on the supplements I don't have any anxiety flare ups like before. Are you able to see a naturopath? Mine made a world of difference.

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  5. Some cats do better wearing a tiny tee shirt instead of a cone or collar (like for babies). Might be worth a try?

    Sorry to hear things aren't going well for you!!

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  6. I do not know what you are going through, but I have three littles, three and under, so I know that exhaustion makes everything so much harder. Sending good thoughts your way and hoping hard for some restorative sleep for you.

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  7. So sorry dear one that your running into dead ends in the previously encouraging paths. Its frustrating to get up the courage to seek medical interventions and have nothing work. I would suggest steampunking your APAP machine and mask to make it more yours, and less alien-medical-device-attacking-my-face. Also give music a try so you are sleeping to that vs the machine sound.
    As For Miss Lilly...I speak from experience as a hyperthyroid human who has been radiated...the anxiety goes off the charts as the thyroid is dying from the radiation. Then gets different as you adjust to life on the replacement medication...this is a major medical procedure, give it some time, and don't give up hope.

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  8. 1. I'm so, so sorry. 2. My husband has the evil machine and it really does help to have the chin strap. 3. He also takes sleeping pills, which at least get him to sleep in the first place.

    Keep at it for a while and see if it gets better. I hope it does.

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  9. I can't even begin to understand how frustrating this must all be for you. Sleep loss is incredibly difficult to deal with, and feeling like a know. Solution didn't work is beyond disappointing. But as an outsider who has been watching your blog can I just say what you have accomplished the last year is amazing! You have started to take control of some difficult issues and made changes that take incredible self control. I don't think I could go gluten and lactose free for a month cold turkey. Going back out in public, taking a cruise... These were all huge steps that took a lot of strength on your part and could not be easy. But you did them. This sucks- but you will get through and persevere because you have strength, intelligence and a terrific support system in John. I hope this wasn't too much from a stranger.

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  10. You can't tell but I'm singing, "I believe you can flyyyyyy..." A good friend of mine sings this to me when things are hard. Or if things are really hard we wrote a song called, " She couldn't catch a f@#*ing break". I'll sing both quietly under my breath for you, stay strong, pet the cat and I wish your whole family the best. Your blog brightens my bad days, thanks for that.

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  11. Jen, lots of positive thoughts and virtual hugs for you. And for Lily, too! Hope you get some good rest soon.

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  12. I, too, have sleep apnea, and I use a bi-pap, which is kinda like an industrial strength c-pap. Anyhow, one of the things that helped with the pain and dryness is that mine comes with a humidifier of sorts attached to it, so that the air has some moistness in it. I'm still a little dry in the morning, but nowhere near as bad as it was without it.

    I go to bed when I can barely keep my eyes open. This helps me get to sleep with that mask on. My machine has a slow ramp up phase that helps me get used to the rhythm of the machine before it hits full pressure. I close my eyes and let out my breath and wait for the machine to push, and I find it kind of soothing to settle into the pattern it sets.

    I'm sorry you're having such a time with yours.It can get better, and I hope it does for you :)

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    1. I concur. I have had a CPAP for 2 years and it does take some time to acclimate, although I didn't take as long as others. You may need to experiment with different masks until you find one that doesn't annoy you. Btw- they need to be replaced every 3 months. All the pieces that go with the machine need replacement within 3-6 months in case you didn't know this. Make sure that you keep your script current with the supplier, they won't give it to you without a current script. I believe it will need to be renewed annually. Good luck, I know it's not an easytransition, but once you acclimate, you will get some decent sleep and the rest will fall into place. Be well!

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  13. Just, hugs. I'm heartbroken for you right now. hugs.

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  14. Sending love your way. Hang in there Jen. It's all so frustrating, but hopefully it will get better soon. I'm so sorry GF didn't work for you, but on the up-side, YAY you can eat gluten agan. I hope Lily settles down too and feels better. One bit of advice: Just don't get your mom's advice all muddled and put the chin strap on Lily, give Jon the pills, and ingest the ointment yourself!

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  15. I don't think that there is anything that I can say that can help but remember that you have a whole host of readers behind you that can and will support you god bless x

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  16. Dang it, the internet just ate my comment.

    Basically what I said was that I was just diagnosed with Hashimoto's and am pending a sleep apnea diagnosis as well. I'm scared to death of that CPAP machine for the same reasons that you have mentioned on here.

    I'm telling you this because I understand. All of it. The anxiety, panic attacks, terrible exhaustion, and especially trying to do things to make yourself feel better and having them not work.

    Reading your post made me feel like someone actually understands what I'm going through. For the first time ever. I know that what you're going through is a terrible struggle, but thank you so much for sharing your story and bringing hope and understanding to some of us.

    You will get through this and find the right combination of things to feel better, I promise. And in the meantime, we're all here rooting for you.

    *big hugs*

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  17. Rats. No one told me I had to get matching pajamas. <-- LOLOLOL.

    Hope you feel better soon and will get used to the machine! Glad you have such a great support in John.

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  18. Jen, Hon, I'm 58. Old enough to be your Mom? If so, here's some motherly advice/information. I've used a CPAP machine for about three years. Yes it was difficult to get used to, I'd take it off about half way through the night. But for me the 'getting used to it' period lasted less than 6 weeks. It should not hurt your face. Maybe you are wearing it too tightly? In Wisconsin, my insurance covered the sleep study, I was taught how to use it and which size nasal pillows or sleep mask fit me the best. They did teach you to use distilled water, right? For a long time now the sound of the machine helps put me to sleep. I'm actually surprised in the morning at how loud it is. I suspect it's like getting used to falling asleep while a radio plays. Nope, it's not sexy, but neither is being dragging your tail tired. I was taking a med similar to Tylenol pm, but with my Doctors advice I now take (just) an antihistamine. Tylenol PM is Tylenol + antihistamine. Do you shop at Costco? I buy the Kirkland brand allergy medicine (little pink pills) diphenhydramine is the only active ingredient. (Much less expensive than Tylenol PM) I love your blogs Jen. You and John are so creative, it's a treat to check out Epbot & Cake Wrecks.

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    1. I was going to recommend Benadryl. Which is in most sleep aids and non prescription. It's an antihistamine and works great. I use it all the time. You can take 2. I also recommend the sleep study. Your machine may not be on the right setting. It could be blowing too hard/ not hard enough which is contributing to your panic.

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    2. Medicinal sleep aids may not be recommended with other medications. SleepMax (I think that's what it's called?) has a sleep aid that's a combination of melatonin, valerian root, and chamomile, I believe. The melatonin--which occurs naturally in humans--helps regulate your sleep, (it doesn't make you sleep more, exactly, it just improves the quality of the sleep you do get) the valerian root helps with stress, and chamomile is nice and soothing. I find it helps to take something that deals with the root causes, as well as the symptoms. It might be something you can take if you can't take other sleep aids. It leaves me less groggy than traditional sleep aids, too. It's worth a shot. I hope you find something that works for you soon. My grandmother and brother-in-law both have apnea, too. I'll ask if they know of anything that helps with the adjustment period. Sending you hugs. Look up baby goats in pajamas if you need something to lift your spirits. :) --TAL

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  19. life is being a bit of a twit to you and John, and that sucks. i'm sorry. may you have a bright spot on the horizon.

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  20. (non creepy Internet hug!!!!)

    Well, let's see..Silver lining... Silver lining...

    Yay for cookies, pasta and cake (un wrecked)!

    Sorry the clouds are persisting. Thank you for sharing - your honesty and willingness to share your life on the Internet is amazing, and so are you!!

    Lily, try to not lick for your momma's mental well being, kay?

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  21. That sucks. We love you and will keep you and your furry baby in our thoughts and prayers. Here's hoping for sweet dreams and Dole Whip in your future :-)

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  22. If you do try sleeping pills, try trazodone. It reduces levels of cortisol in the blood, and cortisol has been implicated in anxiety. Reducing it has been shown to reduce anxiety. (Personally, it has effectively cured my horrible insomnia.)

    Hope things get better for you and your kitty.

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    1. Trazodone is my insomnia med and it truly revolutionized my ability to get to sleep. I was in this vicious cycle of insomnia and then dread about not getting to sleep again. Daily trazodone to get over the anxiety, and then periodic doses as needed made a huge difference in my ability to sleep!

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    2. If you try and don't like Trazodone, DO NOT quit cold turkey. Only time I have ever been quite literally paralyzed with fear as I was trapped in one incredibly vivid and horrifying nightmare after another. In between each dream, I was so close to awake that I was telling myself "Just move! Kick! Anything!" to wake my husband so he could get me fully awake, but I simply could not move.

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    3. I was going to recommend Trazadone as well. I don't handle high levels of stress well and that has resulted in not being able to sleep or sleep well. I was to the point that I couldn't think in complete sentences, let alone communicate and having migraine headaches every day. My dad finally told me to go to the doctor because he thought I might have mono, just talking to him over the phone. Trazadone saved me from all of it and I was able to get back to myself after about a year. I slowly took less and less. I tried Ambient at some point, but it gave me the most horrible and terrifying nightmares. I hope that something works and you get to get some rest. It makes a world of difference.

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  23. I am sorry to hear the APAP is being so difficult for you to adjust to. I second the recommendation of a humidifier unit/distiller water; my husband has one for his CPAP, and there is a marked difference for him using it vs. not.
    Oh! Husband also says that he just flat out couldn't do APAP - he ended up fighting it too much, whereas the constant pressure of the CPAP was easier for him to adjust to. Just something to chew on.
    I will also say that a sleep apnea machine has zero effect on the non-wearing spouse's libido - so rock that thang, girl ;)

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  24. dh's first machine was set wrong and gave him panic attacks in the night (he never got used to it). It was also the wrong mask for him. When he got his second one, the office adjusted his first machine so he had a back-up (pretty handy for an Army guy who goes out of town from time to time).

    As to sexiness, I have adjusted to a new view of sexiness - my husband breathing is sexy, gasping loudly for breath after not breathing for way too long is not sexy.

    BTW, he doesn't do matching pjs ;)

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  25. *Big hugs* I hope it gets better for you soon ! <3

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  26. I'm so sorry to hear that things have been rough lately- I know how difficult it is to be unable to sleep well and to dread going to bed. I have no advice, but I'm sending you peaceful and restful vibes in the hopes that things improve soon.

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  27. I'm so sorry it's taking so long to acclimate to the APAP. I'm one of those who took to hers fairly easily (i have the "just nasal pillows" style mask, and can even sleep on my stomach with it now), though it still took a few months to be completely 100% comfy. My husband and i use something called Bag Balm wherever the mask makes contact with the skin - yeah, i smoosh a bit around my nostrils every night. But it a) helps with the seal for me and b) keeps my skin from drying out, and so helps a LOT. If you can find some, try it out - it comes in little green tins (or HUGE green tins) and is usually in the beauty isle somewhere with the chapstick and carmax.

    If you're not already using a just-nasal-pillows mask, see if you can "scale down" to one - being able to just open your mouth and breathe might help combat some of the panic attacks (i can't handle having a full mask on, even while sick, it just doesn't work for me!).

    Super bonus though: even when i'm so sick i can't breathe during the day, about 5 minutes in with the CPAP my sinuses clear right out and i can breathe through my nose all. night. long. It's freaking fantastic!

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    1. Never thought about using bag balm---I'll try it!

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    2. Brighshadowsky and Kalendi - not to be a worrywart but please be careful about using a petroleum based product in/around your nose with your APAP/CPAP units. If you inhale the product into your lungs it can cause aspiration pneumonia. My sister uses a water-based product called Ayre in her nose to prevent it from drying out so badly overnight. I lobe to use Bag Balm on my hands and feet -- it works great!

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  28. My husband got a CPAP about 10 years ago. He became a different person. (His testing said he wasn't breathing about once every minute!) He had been snoring for many years and it got so bad we slept in shifts, so I could sleep. The first night he got it, it was so quiet, I would wake up and check to see if he was alive! He had to change from the over face mask to the up-the-nostrils one. He also played with the air strength to see what would work. (Doctors don't recommend this, but that's because they are liable. My husband is a do it yourself kinda guy, went online and figured out how to fiddle with it. Maybe that will help you, too.)

    Dearest Jen, I have enjoyed your blog since you started it, and I am thankful you are real on your blog. You share so much and I believe you do a lot of good. I have had some of the same life problems and I have used Edu-K (brand) balances to help me move on from some debilitating things. Short definition: it uses movement to cross the brain's midline and create new neurological pathways for learning. There are people who have gone through training and have been certified to give balances. You can find one near you on their website: braingym.com

    Please check it out. They use Brain Gym for all sorts of things, like riding a bike, handling anger or fear better, being calm in a given situation. It has changed my life.

    Best of luck! And thank you again for your blog.
    R-

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  29. Keep trying with the CPAP machine. It took months, but he does use it consistently now and it makes a huge difference. He started by wearing it for 15 minutes at a time while watching TV or reading just to get used to the feeling of it. Then after a couple of weeks he started using it at night. His doctor did prescribe something to help him fall asleep at first but he no longer needs it. He did try a chin strap but eventually went to a full mask because he has lip flutter which the strap doesn't help. On his machine their are lots of settings for humidity and pressure etc. and he had it tweaked a number of times.

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  30. I'm sorry it is difficult for you! It was for me too. I cried for the first two weeks from exhaustion and frustration, but then it slowly, very slowly got better. I've been using it for six months and honestly can't sleep without it. BUT I never thought I would make it through the worst months of my life! The humidifier helps a lot. Also make sure your mask fits right; I use a full face one because I breathe out of my mouth a lot, but the nasal ones could be what you need. The pink "for her" are made for smaller woman's faces so there is a little bit of a difference. I have some issues because the bridge of my nose is high, so it's been a bit of a challenge to get the fit right. I also use earplugs which help. My thoughts and hugs and prayers go out to you in this difficult process.

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    1. I meant weeks of my life, not months!

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  31. I hope things get better for you. Chin up :) I have a saying hung on my wall "Don't let success go to your head and don't let failure go to your heart". I have every faith in the world that both you and Lily will get better and find things that work for you :) Hope you have a better weekend!

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  32. Sorry, braingym.org

    (its those .com, .org, .net things that get me all mixed up!)

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  33. I don't know if this will help your anxiety since it seems to happen AS you're asleep, but I've found ASMR videos to be extreeeeemely calming. I usually listen to them at night in bed (and often fall asleep to them). I don't get the ASMR effects much, which is a tingly feeling as I understand it. My favs at the moment are Rhosgobel Rabbit ASMR, GentleWhispering is always lovely, SoftAnnaPL, and thatASMRchick. Also, you might find some videos make you want to stab someone in the eye, which are the "mouth sounds" videos for me..

    Best of luck to you and your lovely kitty. Seems like you're well suited for each other.. both a lil anxious!

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  34. I'm sorry you are suffering so much. I am sure it has been suggested or perhaps you have already looked into it, but I figure I'd just suggest it. Whole 30. I see you have already tried eliminating gluten but there can be much more to the story than that. Whole 30 is essentially a 30 day reset. It's hard but worth it. I've never had sleep like I did when completing a whole 30. The book to read is "It Starts With Food". It just might change your life.

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  35. Hugs, prayers, good thoughts, gluten-filled cookies, and cupcake-cakes!!

    I'm afraid I can't relate to any of what you're going through, but I want to thank you all the same for sharing posts like this with us. I have a friend who suffers from anxiety and depression and she is *terrified* to blog about it or, generally, to mention it online at all other than vaguely. I know she reads your blog and I always hope that seeing your posts about what you're going through and what you've overcome will not only give her hope, it might even help her open up about what she's facing some day.

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  36. So many people ahead of me... But just so you know... I fell in love with your humor in Cake Wrecks, and have loved getting to know the girl behind the screen. I can't claim to know in any way how you feel, (Other than panic attacks, but even those are mild in me) And all I can offer you is a heartfelt wish that things get better for you so much sooner than later, and offer virtual hugs.

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  37. I don't have any advice for you, but I'm sending you positive vibes filled with love and hope! <3 Hang in there.

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  38. Ugh. I'm so sorry everything is piling up right now. Isn't that always the way though? Thank you for sharing your story, and hang in there!
    I'm attaching a link to one of the resources I found helped me the most in terms of y set standing thyroid stuff. Give it a read if you haven't already.
    https://chriskresser.com/thyroid/

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  39. Or maybe a Wisp Nasal Mask would be even better than the Eson - it doesn't have any bars on your face. It's little and only covers your nose, but the strap system just goes back around your head.

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    1. Apparently my first comment didn't go through. (I probably forgot to push a button or something.) I was at first recommending an Eson nasal mask - it's a tiny triangle that only covers your nose, so it's a lot less of something on your face. However, it does have a "t-bar" thing that goes up the forehead to help hold it in place. The Wisp doesn't have the bar on it.

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  40. Hang in there with the sleep machine. Hopefully it will get better and you'll get used to it. It took me a while, but it did happen. There may be good news for you on the horizon though. I've read that they are working on making a new type of machine that is much smaller than the current ones and doesn't have any tubes. It's just the part that goes in your nose and is run by a battery. The examples I've seen look to be only a few inches big and don't hook up to anything. Maybe that would help with the panic since it wouldn't be hooked to anything or cover anything but your nostrils. The one I've seen is called Airing and they are doing a fundraising thing to get it going and produced so they can get medical and insurance approval to sell them. It'll be a while before they are on the market I think, but could help you out down the road. Sending lots of positive thoughts and hope things get easier for you. I don't comment often but I read EPBOT and Cake Wrecks all the time. Thanks for always making me smile! Sorry if this posts twice, my computer is acting up.

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  41. Maybe this will help in the future. http://www.fundairing.com/#first-ever-micro-cpap

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  42. I'm so sorry you're going through a rough patch, I wish I could make you smile like you do for me every day here and at Cake Wrecks. I sympathize with the CPAP machine, it took me a while to get used to mine but now I truly don't rest well without it. Do persist, sleep apnea can be deadly. I haven't any useful tips but if it's possible to take strength from our affection and good wishes then you can be Wonder Woman!

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  43. Okay, so speaking as the wife of someone with sleep apnea, yeah, it sucks. I can tell you, Jon is probably sleeping a LOT better. There's nothing worse that realizing your spouse has stopped breathing. Yes, it took several months for my husband to get used to the damned thing. I refrained from making Darth Vader comments for about a year, I think. I'm sorry you're having a bad time of it, but it actually does get better.

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  44. Jen, you really, really REALLY need to try a 5 mg of melatonin about an hour before bedtime. I've had a massive panic disorder my entire life, and these help me fall asleep w/o any heavy duty drugs. Please just give it a try.

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    1. For someone with a normal thyroid, I'd definitely say that melatonin could be useful. Unfortunately, there are concerns that melatonin may suppress thyroid function... making it less appropriate for hypothyroid patients who are already struggling to raise thyroid levels.

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    2. Hmm. Hadn't heard that melatonin might suppress thyroid function. Jen, in that case, take my earlier comment about SleepMax with a grain of salt and ask a doctor first. :) --TAL

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  45. Jen I'm so sorry you're having such a rough time with the APAP. I too suffer from sleep apnea and am part of the crowd that can't tolerate CPAP. My pressure has to be set so high to regulate my breathing that the mask blows raspberries regardless of how tight or loose the mask is. My doc even lowered the pressure and got me the nostril mask but the pressure was still higher than the manufacturer allowed for that mask and I still wasn't able to tolerate it. It was like my nostrils were inflated balloons and it drove me nuts! My masks met the wall of my bedroom many many times. I've even contemplated drastic surgery which would change how I look over having to try to get used to the damn CPAP machine. Just know that you are not alone and people are trying to invent devices to make it easier on us snorers to get some decent sleep. *hugs*

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  46. I was put on an APAP machine when I was in hospital with pneumonia and it gave me panic attacks because it didn't match my natural breathing pattern. I have a CPAP machine (I have serious sleep apnoea) and it was much easier to get used to. (the mask I wear is the one it the top picture you showed) One thing I found really helped was sewing some polar fleece-type fabric over the tubing. This stopped it making a noise if it bumped the wall in the night and also stopped me waking in a panic when a cold clammy THING wrapped itself around my neck. Everything is hard to deal with if you are suffering sleep deprivation. But remember we are all cheering for you. And try and take lots of naps.

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  47. Didn't read all the other comments, so sorry if I repeat anything. I've been on a CPAP for over a year now. Yes, it takes getting used to. You learn to brush your teeth and blow your nose before putting it on. I even wore just the mask part around the house for a few days to get used to having a thing on my face. I even got used to my drool getting trapped in the mask then oozing onto my face when I turned over. I definitely sleep better, and I no longer wake up with humongous oxygen-deprived headaches in the morning. For me: WORTH IT.

    As for the sexiness thereof: I'm still single, so that was one of my big laments, having to wear this thing on, say, a potential honeymoon someday. I was complaining to my sister, who laughs at everything I do, and she said in a funny voice, "Honey? Do you want to sleep with a bear or an elephant tonight?" It made me laugh so much it kind of cleared up that anxiety. Whoever I end up with is just going to have to accept my hoseface now. :)

    I will echo the others and suggest taking short naps to get your rest and get used to the mask. Good luck with everything, and I appreciate your vulnerability in sharing these things with us, and letting us try to help. <3

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  48. Have you tried Selenium as a supplement? Google selenium supplement thyroid and you'll find info - I give it to my 14 year old Hashimoto's daughter. It seems to have helped her energy levels, and made her a little happier, a little less anxious. It's worth a try :)

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  49. Jen, I have nothing to add to the advice here, which is all great. I do have a ton of empathy and sympathy and love and hugs and good wishes for you and Lily.

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  50. *hugs*
    Those machines aren't fun. But there is a smaller one in the works (see meredith's comment above). Hopefully it'll be available soon!

    Definitely try benadryl to help you sleep if you can tolerate it. I use it and it's working wonderful for me.

    With regards to going gluten and dairy free - you might want to look into the keto way of eating. It's helped me immensely and does help with skin issues. You need to commit to going sugar free, and possibly even fake-sugar free. It's not for everyone, and you definitely want to research it in depth before you go for it. Try reading 'the art and science of low carb living' if you're interested.

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    1. Eating a ketogenic diet is usually not a good idea for those with thyroid problems. I was a die-hard low-carber for six years and nearly destroyed my thyroid. I'm on the Perfect Health diet now (and a hefty dose of Armour). For autoimmune issues like Hashimoto's I highly recommend diets like AIP Paleo or possibly GAPS with an emphasis on carbs.

      Katy H.

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    2. Didn't know that about the thyroid thing. Mine is underactive but minimally so. I've been doing well on it - but it's definitely not for everyone!
      Thanks for the info!

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  51. I really do wish you well. It just sucks when life keeps kicking the seat behind you. Not really anything horrible enough to justify going bug nutz and getting it out of your system, but just enough to make you feel like you are failing at the whole human thing. Hate that. However, in the ever-silver-lining-kind-of-way, at least you know it can't last forever. Hang in there and know that we are there with you.

    Ugh. I hate the pep talk routine. The only thing that solves any of this is a bowl of warm fudge and two spoons. But, you live too far away to make that plausible, so I have to settle for pep talks. Here's to fudge. And knowing just as good things end, so do bad things. *clinks spoons*

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    1. Like "kicking the seat behind you" may be my new favorite phrase. Ha! Thank you.

      *spoon clink!*

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    2. Chocolate chip cookies are helpful too!

      I know almost nothing about sleep apnea but a neighbour had it and it was resolved by removing his tonsils (which, it turns out, were overlarge).

      Wishing you all the best!

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  52. Hugs to you! I'm glad you posted this. I've been wondering about your sweet kitty. I lost my bunny recently to cancer.

    My dad also has sleep apnea and they tried to put him on a cpac machine but he freaked out. HOWEVER. I do have a suggestion. This is going to sound ridiculous, but breathe right strips. Seriously. If nothing else, they will help that 40 minutes of sleep you DO get be more restful. And they won't bug you as much as Cpac.

    I did see a picture somewhere of a new Cpac that looked like super small, like a swimmer's nose pug almost. But of course I can find anything on the internet except that picture. Well, I can find a picture of something like it, so I'll link to that.

    http://austincountynewsonline.com/new-cpap-machine-could-revolutionize-sleep-apnea-treatment-for-sufferers/

    Keep your chin up, you are doing great! And look how loved you are by that little kitty!

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  53. I am very sorry about both your situation and Lily's. Everyone who reads this blog supports you, and we will understand if you need some time away to recuperate if that will lower your stress.
    Ps, as someone who does has bodily issues with gluten, if you aren't noticing a change, don't stress about it -it is hard and I fall off the wagon all the time despite my symptoms. Go eat some oreos (no dairy in them), have a nice slice of toast and good Florida orange juice, and do whatever you need to do.

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  54. Oh, Jen. :( I'm so sorry! I haven't had to use a CPAP or APAP, but just hearing you describe what it feels like sounds so rough! I hate not getting enough sleep, for any reason. And I feel you on thinking that you've found that magical solution to your problems and then it just... doesn't work. I've felt that way so many times trying to help my acne... Proactiv, oil cleansing method, apple cider vinegar toners... every single one was a let-down.

    Maybe Lily can go back to the baby onesies for a while? I hope some of the other commenters can help with your APAP problems. I'm hoping good things for you and Lily! I know you'll both get your sparkle back soon!

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  55. There is a mask now that ONLY touches your nose... I'll have to look it up as I have had one now for a few months and it's amazing to me. The mask ones are VERY hard to get used to. You need the nose pillows one. Like a Respironics Breeze (in fact I have one here I never use, I'll send it to you if you want to try out). It's a huge dramatic difference and you aren't freaked out by this giant thing (that won't stop leaking!) on your face. I never could find a regular mask that fit. And I've been on cpap for 10 years. Let me know if you want to try it.

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  56. Thanks for sharing so honestly, and hugs to you and Lily and John. Sounds so frustrating...wish I could wave a wand and say the right words and somehow fix everything for you like a fairy godmother (although there's that pesky "expires at midnight" clause that gets in the way). Hang in there...and I hope you get the hang of sleeping with the cpap machine soon and Lily's over grooming goes away.

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  57. My Mom had really bad sleep apnea and she refused to use the CPAP. Turns out a lot of her problem was really big tongue, big teeth, and small jaw and mouth. She had a surgery where her epiglottis and a some of her excess throat tissue removed. It helped drastically. Sending prayers and hugs your way.

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  58. I understand your frustration and sadness. I go through spurts of trying to fix various health problems, but I do get burned out on the failures. Just keep plugging away as you can. And keep that APAP on. Every minute that you're not breathing, you're killing brain cells. It will get easier.
    Sorry about Miss Lilly. I just got back from the vet with my Rusty, who's also working a raw bloody patch on his back. Since we can't keep him on steroids forever, and the Atopica didn't help, they just took 2 test tubes of blood to run a full regional and food allergy panel to see if we can identify any trigger allergens that we could desensitize him to.

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  59. No words, just hugs and positive vibes from Oviedo!

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  60. I know it's hard getting used to a machine. But you know what's harder? Not breathing. Stick in there! I promise it'll get better . . . eventually. Yes, it may take a while. Yes, you may have to try different mask styles. But one of them will eventually work.
    A couple of quick suggestions: You might get some lavender oil or some type of calming aromatherapy oils. Sometimes the plastic-y smell from a new mask is hard to get used to. Also, when my husband got his, his doctor suggested wearing it while he watches TV in the evenings or reads. If you can get your mind off of the sensations while you're awake, it's easier to deal with when you're sleepy/want to sleep.
    You might still have rough nights every now and again, but it will get better.
    Hope this helps! Thanks for being awesome!

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  61. When you talked about a sleep study I said to myself "Oh please let her take to it right away!" I'm sorry to hear your experiences are a lot like mine. All those things you said.... I've experienced. The only things I can encourage you with are: keep at it. You need it. John needs it, so he doesn't wake up next to his wife who has stopped breathing. Yes, really. Don't do that to him. You NEED the freakin' mother-#%&@ f*&$@$ machine. The other is to keep working at it until you find something that is right. I started out with the full nose and mouth mask, and reluctantly moved to the nose plugs. The plugs work better -- for me. I also started using a water based moisturizer around my nostrils before I put it on. Letting it dry for about a minute or two before putting on the CPAP helps. It does not take away all the pain and discomfort, but it helps. I play mind games with myself so I don't feel like I'm suffocating, or when I wake up because the hose has been caught and I want to take the d*@%! thing off. That works for me -- to keep it on another hour or so. I haven't slept a whole night wearing my CPAP in probably a year --- and I'm ok with that. It works for me -- that may not be an option for everyone.
    Sending my love and prayers and best hopes to your whole household!!
    Maureen S

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  62. ugh jen im so sorry, i have also suffered form insomnia and mild to severe anxiety my entire life, I'm more of a tosser and turner, acupuncture helped me but is a bit of an upfront investment and really only helps me sleep a little bit extra each night. I'm sure you have tried all the basic things Sleep hygiene! meltonin! not eating x amount of hours before bed! no caffeine for 6 hours before you go to sleep! dark room! cool room! sleep foods! sleepy time tea! no screen time 2 hours before bed! but alas i still toss and turn, i wish you the best of luck!

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  63. Thank you for being transparent. I hate that you are miserable, but am thankful to know I'm not alone in it. It's so hard, but I did find a few things that may relieve some of the struggle.
    Essential Oils
    Diatomaceous Earth
    Talking about it like you did today.

    It's brutal, but I am praying for you and please know that you are not by yourself in this. I'm praying for restful, restorative sleep for you. Don't give up. The light might seem far away, but the tunnel ends, Beauty. It won't always be this way.

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  64. Thank you for being real. When I an low, I will come back to this post to remind myself that we all go through disappointment. *HUG*

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  65. There are too many comments here for me to scroll through to see if this is a re-post, but here is something that showed up on my radar recently. When I saw it I thought of you. https://www.indiegogo.com/projects/airing-the-first-hoseless-maskless-micro-cpap#/story

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  66. Keep trying with your machine. Sometimes it's just a little thing that makes all the difference (mask, humidity setting, etc). It took forever to get used to mine, but it really did make a difference. I also notice a different when I exercise regularly. It really improves the overall quality of my sleep.
    Hugs!

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  67. I don't know your history with sleep apnea, but have you looked into an oral appliance? If not, here's some info to get you started: http://www.aadsm.org/oralappliances.aspx

    Sending you good and sleepy thoughts.

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  68. I can sympathize with you about being tired, fuzzy headed and too damn exhausted. For 18 years I've had lousy sleep, fatigue and myriad other symptoms that seem to be chronic fatigue syndrome. Now I've finally found a doctor that listened to me (and didn't say "it's probably just depression" and prescribe an antidepressant that just made it worse) and I'm having a sleep study next week to rule out sleep apnea. Part of me wants it to be sleep apnea because there is a "cure", but at the same time if it is, I'll be really pissed that I've had to live with it for so long because nobody would listen to me. Part of me is weirdly possessive of the chronic fatigue syndrome label. But overall, I just want a doctor to say it's real and not all in my head.
    Something I have found somewhat helpful is taking 5 HTP along with magnesium before bed. I also take 3 mg of melatonin and my allergy pill is Zyrtec which I take before bed because it can make you drowsy and when better to be drowsy. You should read up on 5 HTP though and the preferred type of magnesium and other supplements that should be taken in combination so they all work properly.
    Mental hugs and drowsy thoughts coming your way.

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    1. I forgot to add that you've given me so many smiles when I read your blog, so I hope this makes you smile like I did when I read it today . . .

      Women are Angels and when someone breaks our wings we simply continue to Fly on a broomstick because we are flexible that way.

      Everyone, broomsticks ready . . . FLY!

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    2. Oh wow, I know that feeling of just hoping for a real diagnosis; sometimes the worst thing is when a doctor insists you're fine, am I right?

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    3. I've gotten chronic migraines (up to 28 days a month for a few years at one point) for almost 20 years (which is a scary thought in and of itself) but after multiple doctors I finally ended up with one who realized there was a problem and pushed for an mri to make sure that they were just migraines...I still haven't decided if it was better that the scan didn't find anything (at least if there was it would have been an easy answer). Given that at the time my lead's husband was dying of cancer that spread to his brain, I'm glad the scan was clean, but part of me still wishes for that simple reason.

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  69. Life is pretty much undoable if you can't get any sleep (I know of what I speak). Many hugs for you. You'll find some ways to feel better--I'm sure of it. I'm sorry the road there is so hard, though--that sucks.

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  70. FYI, there are other ways to combat sleep apnea. A bed that raises your head (think of the Mighty Jungle sleep number commercial ), the CPAP/BiPAP machine, a retainer type device that realigns your jaw, and surgery. Since the CPAP is causing anxiety attacks, talk with your sleep specialist about the retainer.

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  71. My husband has a CPAP machine and he prefers the 'nose pillow' kind (the second pic you posted). He found it much easier to get used to; with the full mask he was getting that face hugger feeling. Have you seen an ENT? My husband's apenea is caused by a combo of enlarged tonsils, elongated upper palate and uvula, which really narrows his airways. It can be fixed, but he just can't get up the courage to do the surgery to fix it.

    And I had my own disappointment this week. The beta blockers I thought were helping just made things worse. Woke up with stroke like symptoms, so my family rushed me to the ER. Turns out the beta blockers (especially without my Cymbalta I had run out of) was causing my blood pressure to plummet when I stood up, and that combined with my depression and anxiety, had given me those stroke like symptoms. So no more beta blockers and that should go away, but now we're back to square one and I'm going to keep getting dizzy until the blockers are out of my system. So I know those feels.

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    1. Eek! I had a bad reaction to beta blockers, too, though nothing quite so dire: they lowered my bp too much, and during sleep my heart rate got dangerously low. That was the first thing docs put me on for anxiety, since I had constant tachycardia, and I still remember the sweet relief when they first kicked in. Maybe your doctor will switch you to something like Xanax, now, which doesn't affect blood pressure? Fingers crossed, & sending hugs!

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    2. Yeah at first the beta blockers were great, I hadn't felt that relaxed in a long time. I have been on Xanax on and off for the past year, and it helps a bit. I think we might just need to adjust dosage on things. Cymbalta really has helped, but the neurologist thought I might need a higher dose. Apparently it can also help with your blood pressure dropping when you stand up, who knew?

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  72. Sending you so many hopeful wishes. You sharing your struggles helped me go to another Dr. after I realized that my Dr. was causing more harm than good with an insane diet for me: nothing from a cow, gluten-free, soy-free, no refined sugar, etc. I felt worse and worse. She shamed me when I stopped the GF aspect. I could barely move faster than a shuffle, I was exhausted, and in so much pain. I thought that I needed an adjustment in my hypothyroidism medication - so I went to another Dr. who got me to a rheumatologist who said that I was the poster child for fibromyalgia.

    I'm still trying to figure out how to manage this chronic condition, but a huge help was when someone shared the Spoon Theory with me. Perhaps you can find some help with the But You Don't Look Sick community.

    ::HUGS:: to you, Lily, and John.

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  73. No helpful hints or advice. Just virtual hugs and a wish for things to get better. I know it's hard to find the good when everything is sucking. Hang in there and know you've got a bunch of us rooting for you.

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  74. Hugs and prayers for you and kitty - echoing all the advice on the machine (my brother and father have them - try different masks, straps, etc). Two further thoughts for you, have you tried only using while you are taking a nap for a week or two? It might take some of the pressure off you to get it to work right when you are desperately tired and anxious. Have you tried a white noise app? There are some great ones that might add to the whole creating an ambiance that allows you to sleep (or might contribute to the whole, sensory stress overload - apologies if this idea just makes it all worse)... One thought for your kitty, have you tried a thunder shirt? They have them for cats and one of my friends swears by them for her stressed kitties...hope that things get better soon and remember that lots of people are hoping you both feel a wee bit better soon!

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    1. Sadly I can't nap - insomnia only lets me sleep after laying there for a good 3 hours - but I do wear the mask while I'm in bed *waiting* to sleep, which, again, is many hours. Heh.

      We did try a thunder shirt before, and it does seem to help Lily, since she likes to be hugged. (I know a lot of cats hate hugs, but the pressure seems to comfort her.) I've got her in a onesie right now, but I may switch to the Shirt later today. Thx for the reminder!

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  75. I had the same thought as some of the others... you need to get your glue gun out and go to town on that thing! I'm sorry you're so stressed and dealing with so many things. Always love the meme that says "My track record for getting through bad days so far is 100% and that's pretty good". Hugs to you and here's hoping you will find answers and help for all your questions and concerns! (Wish I had some of them!!)

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  76. Jen, hugs for you and Jon. Lots of advice here. I hope something works for you. Know that we all love you ( non icky Internet love- not the obsessive kind!) LOL

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  77. Sorry to hear that you've been having such a rough time lately. Kinda puts it into perspective when I get crabby about my terrible overnight shifts at work twice a week, than having to re-adjust for only a few days before going back to it. Sending hugs your way! :-)

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  78. Can I just give you a virtual hug? I just had the whole sleep apnea/CPAP mask conversation with my parents over the phone not 30 minutes ago. Up until a month ago I was one of those lucky people who sleep like the dead, never waken, never have to get up to pee. Only downside was I'd still wake up exhausted by my two alarms. I've had people tell me since college (20 years ago) that I quit breathing in my sleep. Only now I'm going through some weird phase. Pretty sure it's called menopause. One month ago my entire sleep pattern changed. I've always been a night owl and suddenly I'm putting myself to be around 10 or 10:30. I'm waking up multiple times a night. 5:30 in the morning finds me stumbling to the bathroom. This morning I woke before my alarm and was making pancakes at 7:30 because I actually had time to make pancakes and still get to work on time. That has never happened! It's like I'm not me anymore. And the funny thing is I don't feel tired once I'm on my feet for 3 or 4 minutes. Don't get me started on the weird hotflashes at night. This isn't supposed to happen for another 10 years! On another note...your kitty has the prettiest eyes, and I think the inflatable collar looks adorable.

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  79. All the hugs and love! I just had an appointment with the doctor about my CPAP today. After using mine for 6 years with absolutely no follow up with any medical professionals, I now have a brand-new machine. It took a while to get used to the old mask and they fitted me with a new mask today. I had to try multiple types and sizes of masks before the tech signed off on the one I was given.

    Don't give up hope. A lot of things have changed recently, and people with anxiety tend to take a long time to adjust to new things. Be nice to yourself, and know that your support network is out here in the interwebs.

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  80. I didn't read all of the comments, so if this was already suggested just ignore. I have heard of an alternative to the APAP machine. It is essentially a mouth guard that moves your lower jaw forward. Honestly, my knowledge of it comes from Monsters in the Morning on Real Radio in Orlando. One of the hosts switched to it because he couldn't handle the face mask. I wish I remembered more details to share with you.

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  81. :( I have no ideas or suggestions for help, but i am so sad that things didn't go right for you with all of these health 'experiments'. I wish that they had helped you. I hope that you eventually get used to the machine and can get a good nights rest for once. It sucks that it could take months to get there though. I am super proud of you and way impressed that you were able to stick with your dietary changes for so long. If you can do that, you can do anything! I swear! Today is rough, but soon, something will click and things will start to get better.

    Sending hugs and support your way!

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  82. All I want to say is that I'm praying for you, for all these things that are weighing so heavily on your spirit. Lord God, please give Jen and John wisdom about what solutions to head towards, please give them peace, please give Jen comfort.

    I'm like most of your readers, who just feel so much affection for you (and your hubs & kitties!) and I'm so sorry for all these hard things. I would be feeling blue too, with all that going on at once. I'm esp. sorry the dietary changes didn't help as you hoped they would--but YAY for you for trying!

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  83. I hope you are able to persist with the CPAP/APAP machine. My Dad has sleep apnea and had terrible trouble getting used to the machine, until he tried a nose clip instead of a full face mask (apparently he has a strange face shape which means the mask does not seal correctly so that was part of his issue). But when he did finally get used to it (with the new attachment) it made a big difference and he actually felt like he was sleeping instead of waking up tired.

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  84. So sorry to read of your troubles. I hope you get some respite soon.

    Manufacturers of those makes are really missing a trick - they are crying out to be designed in a steampunk fashion!

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  85. Very sorry that life is so hard at present. The only thing that I can add to the comments here is that it is worth looking at your oestrogen/progesterone levels. I experienced night panic, apnea etc for a year until having the mirena coil removed (it is a hormone releasing coil) and the symptoms (including day panic attacks) disappeared immediately. If you use any form of artificial hormone contraception it may be worth looking at the connection. Hope you find the answer (and for poor Lily too).

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  86. I had many difficult moments getting used to cpap, although it did go pretty smoothly,  it had its moments. I did a bit of wearing it during the day to get used to it too. And was also devastated my clinic didn't have any pink for me....
    I don't know if you had a look at http://www.cpaptalk.com/CPAP-Sleep-Apnea-Forum.html but they helped so much with my frustration,  my knowledge,  and being able to control my own treatment. And most of the stories are success ones too, I would say far more than 50% tolerate treatment - once they persevere with it. And cpap/ apap is generally the gold standard treatment.
    Since its an apap,  chances are your pressure has been set at too wide a range - so u feel you can't breath and the changes disturb you.  This is something you can change your self. (Some people change to cpap altogether)
    The ramp function normally comes as standard, most people turn this off, or adjust it heavily (appears no one needs a 45 minute ramp!) - again this can make it difficult to get to sleep, as you feel like you don't have enough air.
    Then there's a whole world of masks, and liners. I have persevered with my full face mask,as a mouth breather it makes sense. There are a lot of areas to fiddle with, but it can be done.
    You have lived many years with sleep apnoea, so taking the time to get it right won't make a massive difference to the big picture outcomes.
    I did have to change from breathing based relaxation exercises to muscle based ones tho - once I got used to that,it helped as well!
    Dr's really underestimate the psychological assessment period... It is difficult to accept changes, difficulties, life long machinery (never mind the dietary stuff too), so be gentle with your self.

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    1. *psychological adjustment, not assessment!

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  87. Should you see this in the sea of fellow CPAP'ers, I will share what I was taught by my supplier.
    Try wearing the mask - no hose, no machine - around the house in small doses during the day, maybe while surfing cakes.
    See if putting your hair in a ponytail helps. (I absolutely have to)
    Sit in front of the TV with the full system attached and turned on, staying fully upright and running it on Ramp if yours comes with that.
    Talk to your supplier - mine turned my machine's pressure WAY down when I started, so I could adjust. Over a couple months, I was able to go full-bore at my recommended pressure.
    Ask Jon to um… distract you… while you're wearing the mask. This gives it positive association and definitely helped me with the "I'm a hideous steam-powered elephant" complex I was developing.

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  88. As a sleep tech and a user of cpap user here are some links that have helped me and my patients. I agree with what kimberely says about the apap. You definitely do need a study to find out what pressure you actually need. Too little or too much pressure can also disrupt your sleep. I strongly recommend seeing a doctor who specializes in sleep. the national Sleep Foundation ( http://sleepfoundation.org/ ) should have a list of doctors in your area. As for masks, I went through probably close to 20 different masks before I found one that I felt comfortable in. Masks are a big problem and one of the problems is people tend to over tighten them. Also for mask "farting" or "raspberries" a mask liner should help. I hope these links can help you:

    http://www.cpaphelpdesk.com/
    http://www.sleepguide.com/
    http://www.cpaptalk.com/CPAP-Sleep-Apnea-Forum.html
    Mask liners:
    http://www.remzzzs.com/
    http://www.silentnighthealth.com/

    There are other alternatives to cpap such as oral appliances. http://www.aadsm.org/oralappliances.aspx
    But again; I would highly recommend talking with a sleep specialist. I may sound like a broken record on recommending a sleep specialist. but you would not go to a gynecologist for a heart attack, you'd see a cardiologist.
    Keep trying and searching for answers; they are out there. And keep posting about them. we in the Epbot community care about you and are here to help.

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  89. Well crap. I am so sorry to hear that the machine is not helping. That Lily is back to over grooming. That being GF wasn't working for you. I wish I could wave a magic wand and make it all better. Sending you (non-stalkerish) hugs and more good juju that things start improving for you.

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  90. I, too had trouble using even the smallest of masks due to severe claustrophobia. My main issue was that my oxygen saturation was dropping past safe levels, so my sleep clinic decided to try just oxygen. BOOM. Just regular oxygen prongs hooked up to a machine that filters oxygen out of room air. Definitely worth looking into. The only problem I have is when my hubby 'cricks' and releases the supply line so it blows hard up my nose...he seems to think that's amusing for some reason...

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  91. I don't really know what to say,except hang in there. Sleep deprivation is terrible - when I had my twins they needed to eat every 3 hours, and took 2.5 hours to do it. I was depressed, and angry, and almost went crazy. Maybe try napping? Cutting down/out caffeine? Anyway, I'm sure you don't need advice from random strangers, but know that we are sending you virtual hugs and hoping you feel better soon.

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  92. Many virtual hugs and thoughts of encouragement.

    Here's something that might distract you: There's a seller on Etsy, XYZWorkshop, that makes little planters shaped like robots!

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  93. I'm so sorry things are rotten for you. Sleep deprivation is awful and insidious. I hope Lily feels better soon. I seem to recall you putting her in a baby onesie? Anyway. Best of luck, and I sincerely hope things improve immensely really soon.

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  94. Jen, thank you for sharing. I'm sending s lot of hugs and good thoughts and prayers your way. Things are always worse when sleep deprived. I encourage you to keep trying with the sleep apnea machine, talk to your doctor about it if necessary.
    Maybe since the GF didn't show any tangible results but the lactose free did just stick with lactose free. Maybe the stress of everything else going GF Just made your body go aaaaaay yeah ..no..*grumpy face*. Our bodies do crap like that ya know lil bastards. Any way I'm rambling. Get some rest as you can and lean on john. Exist in the place you are and feel your feels and I am praying for you and Lilly *hugs*

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  95. I read all of these comments after your post and I've been crying the whole time. While I'm so very sorry that things don't seem to be working out for you right now*, I'm absolutely feeling good about being human by seeing all of these wonderful people offer advice and commiseration after losing faith in humanity by listening to all the horrible things going on in the news these days.
    *You are the queen of adaptation and I have absolutely no doubts that you'll turn all of these seeming defeats into wins by finally discovering something or this or adjusting that. It may take you a while but I am quite sure you will get there and soon.
    Along with me, my kitty CinderBear and my dogs Gemini, Ginger and Nikita are all rooting for Lily (and you of course) and my husband and his unused CPAP are rooting for your defeat of the elephantine monster too.

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  96. Of course you feel discouraged, sad, frustrated, angry, anxious, tried, etc. It's a tough situation, and it's frustrating when proposed solutions don't work. Hang in there, sweetie. You've got this complete stranger's full support as you work your way through this.

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  97. No advice because you're going to get that by the bucketful. Just support and low. Lots and Lots of support and love.

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  98. Oh that sucks. There's nothing worse than when all your problems converge on you at once. And then the lack of sleep makes everything 1000x worse. Sending lots of *hugs* your way.

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  99. I am sorry to hear that you are suffering. I see that you are already getting lots of advice, but I will add my two cents anyway. I will also send up a few prayers for you.

    As you most likely know, your hypothyroidism is probably making this even worse. I have hyperthyroidism and get terrible insomnia. I found the best way to deal with it was to make *strong* chamomile tea... I buy loose tea from the local natural food store, which is cheaper, and you can put in a little extra. I don't measure it, but it's about a tablespoon, steeped for five minutes and then strained.

    For bad nights, I'll also add a little passionflower and/or valerian. Valerian is not for "extended use," but it really works! And no side effects or addiction. If you are also feeling anxiety, try lemon verbena and lavender.

    I've gotten really good at making tea quietly in the dark so as not to wake my husband. And then I sit and cuddle my pets, drink my tea and take a minute to calm down and cool off. Getting up for a few minutes presses the "reset" button and then I can usually get some sleep.

    If not, hey, Netflix!

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  100. I just want to encourage you to not give up! Do it for John when you can't do it for yourself. I have been struggling for years to find what I need to feel better. Nothing positive yet. I am convinced that I have a hormone imbalance throwing everything out of whack. I'm overwhelmed by the number of things I could try, so I'm hunting for a doctor that will listen to me and help me find the root cause of my problems. I'm jealous that you could go back to gluten. Going gluten free didn't make me feel any better, but now I get sick when I eat gluten. One of these days, something I try will finally help me feel better. Keep talking about your struggles so you can get the encouragement you need to get through them.

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  101. I agree that the follow up sleep study makes all the difference. The first study night is to determine in you have apnea but the second study night is to find the correct settings, gear, machine, etc for you. I only slept for 20 mins total the first night. I dreaded going back. When I went back for night two, I was fitted for gear, thought "this is miserable", then slept all night! I thought the tech was lying when she told me it was 6am! I know the anxiety makes it feel impossible to do these things. John could stay with you. Just make it clear that it's what you need. I know how tired you feel right now and it's not fun. Hang in there and get the adjustments you need. I'm pulling for you!

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  102. I always read your posts about health issues with a heavy heart, but since I don't suffer from anxiety - I can't relate. However, there is something wrong with me that no one can figure out, and i've tried some of everything. So, i read this post thinking "I know that feeling, that really sucks, and I'm so sorry you are going through this!!" I just wanted to say, thank you for sharing your life so openly so that some of the rest of us don't feel so alone!!!!! You are an amazing woman and family, you have no idea how important your 2 websites are in my life. thank you!!!!

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  103. I'm so sorry, Jen. I have chronic health problems too, albeit of a different kind, and even though I can't understand exactly what you're going through I know how frustrating and challenging it can be, especially when the thing you thought was going to be The Solution... isn't. I am sending you and Lily virtual Internet-hugs. <3

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  104. I have apnea... and depression with a side of anxiety... I understand. From the few comments I browsed through (we're a wordy bunch) there are folks recommending going for a sleep study and to get some "professional" help in fitting your mask and everything and I 100% agree! That's what I had to do.. didn't like it, but it helped SO MUCH! I did a split study b/c we were paying out of pocket at the time and so before I actually tried to go to sleep, the tech fitted me with the mask (nasal pillows are actually my choice (your second pink photo)) and had me sit in the bed, watching TV, just getting used to breathing with it.. not trying to sleep, not under stress or anything. I think that helped tremendously once I had to wear it to try to sleep.

    I'll admit, it took a whole lot of time to get used to wearing it at night. I finally found the right combination of how to wear my long hair, what sorts of pillows I needed, how to lay to make it stay on and make me feel comfortable... but now, I'm 4+ years using it, and this winter when I was stuck in a hotel b/c of an ice storm and didn't have it with me, I couldn't sleep AT ALL!

    At first I ended up using my hair and a pony tail on either side to hold the straps to my head. It might not work for you, but my biggest problem was that my hair was causing the straps to slide up my head and the mask to unseat itself. Then I ended up creating a pillow support all around me so I was almost sitting up... think, reclining in a lounge chair, but in bed.. Granted, I'm sleeping alone, so I didn't disrupt anyone else, but eventually I got used to it.

    OH! I almost forgot... if your machine has a "ramp" feature, this should help a LOT... it gradually ramps up the pressure so you don't feel like you're being blown away at first. And, when I first got it, as I was going to sleep, I felt the need to exhale from of my mouth every so often. It felt less oppressive that way..

    I hope you get some sweet sleep soon! My depression and anxiety aren't gone, simply sleep alone isn't the issue, but I absolutely know it's better with better sleep. (OH! and the people around me tell me I'm not nearly as grumpy any more!)

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  105. When Husband and I got our CPAPs, I got the first "for Her" mask pictured, and Husband got the regular version. When, after many months, I gave up trying to sleep with it (and believe me, I tried everything: the essential oils, the mask cover, sleeping pills, humidifier settings, lip balms, but any pressure at all on my face made me freak out and the nasal pillow mask I tried at the sleep center nearly triggered a panic attack), Husband snagged the pink headgear. It was actually cut/shaped a little different from his blue headgear, and fit his headshape better! I'm hoping that if the little teeny tiny battery-operated CPAPs ever get off the ground, maybe I can handle one of those.

    At least you gave going gluten-free a fighting chance. :) It's not for everyone, and not everyone needs it. When a sister in the congregation suggested it to me, I was skeptical, but Husband noticed a change in me within the first week. After several months, I could tell if I accidentally got glutened, because it would feel like the worst PMS ever.

    Traditional OTC sleeping pills don't work for me, because all they are is Benedryl, which I took a lot of as a kid. Herbal blends sometimes work, but magnesium supplements worked best for me, possibly because restless leg syndrome runs in the family, and magnesium can help calm cramping. Epsom salt soaks work, too.

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  106. There is zero evidence to support gf diets for anyone except ciliacs or allergy sufferers (gluten allergies, that is). CPAP can help if you can get used to it. I wonder if there is any correlation between your anxiety spikes and Lily's?

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    1. That is a good thought. Animals do feed off our emotions. Jackson Galaxy is always talking about the guardians anxiety exasperating the problems.

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  107. Hi Jen. I know you've mentioned this before, and forgive me for not remembering but, you are just taking Xanax as needed for your anxiety, correct? You aren't taking a daily medication. If that's correct, have you considered taking a daily anxiety med? I also have issues with anxiety but I take a daily medication and it helps me so much. I had trouble sleeping from the anxiety before but now I can sleep well and I have way more good days than bad. I rarely have bad days now. It's so wonderful! Maybe that would help you. Then, you might be able to sleep better also. I take Cymbalta, which is an anti depressant but is also used for anxiety. I just use it for the anxiety and it's a huge help. It takes at least a month to really fully adjust to it and feel the full affects and it has some side affects when you first start taking it, but it really helps so much. Just something to consider and look into. I'll be praying for you.

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    1. And I'm praying for your sweet Lily as well. Sending hugs your way!

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    2. Thanks, Leah! Yes, I only take Xanax as-needed, so maybe once or twice a month. My day-to-day life is relatively anxiety-free, so I've been reluctant to take a daily med. It's good to keep in mind, though, so thanks.

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  108. I was diagnosed with depression in 9th grade. I've been on antidepressants my whole life. I got diagnosed with GAD, which is like Social Anxiety Disorder except I worry about everything. I was put on Cymbalta which took the anxiety and depression away so well I went hypomanic. I was diagnosed in May as bipolar. I had to be hospitalized for a week while they figured out what medications I should be taking. I still have a really hard time sleeping. My oldest has Autism and set the microwave on fire at 3 in the morning a few years back. I wasn't taking sleeping medications at the time and was able to put the fire out. (It killed the microwave though). I have to take massive doses of sleeping medications to sleep and I'm afraid to take half of them because what if I don't wake up in an emergency. The last month has really been the worst in my life. But reading your blog and seeing all the brave things you do inspire me to try to be a better person. Thanks for letting me share. (I'm thinking I'll see if I can get a sleep study done, I work for the local healthcare system and my doctor rocks)

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    1. I'm so sorry, Jarvis! I can't imagine trying to deal with all that *and* having a family depend on me. I'd definitely get the study done, if you can; never know what they might find! Hugs.

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  109. I really hope things get better for you soon :(
    I have a friend with sleep apnea and the CPAP didn't work for her. She tried (and this might sound weird) tongue and mouth exercises after she gave up on the machine, and it worked! They did another sleep study after a couple of months of the exercises and the incidents had pretty much stopped! I'm sure you can find info online about them, they're awkward and repetitive, but they're something you can do for yourself and take control over.

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    1. I'm intrigued! Off to google...

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  110. *Big Squishy Hug*

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  111. Jen, if you were gluten intolerant you would know. It would be very obvious. So don't let people push the latest fad on you. You may have to try several different masks before you find one that works well for you. I have many friends that have problems with sleep apnea. Don't be to hard on yourself. My friend is supoesed to use water in hers and she feels like she is drowning.
    Seeing you have a girly Darth Vader costume, you could make an art project with your apnea masks. LOL Just think of all the fodder you are getting for cosplay. Just a thought. Good luck and keep trying. Hugs!

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  112. Jen, in addition to what everyone else has said, maybe you can play around with this to make you feel better:
    http://www.wimp.com/ice-marble/
    Crafting always gets me out of the why-me's.

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  113. I'm afraid I don't have any suggested remedies or even words of advice. All I can give is encouragement and positive vibes. You and Lily are stronger than you think. It's okay to have bad days and a little raw emotions, because it makes you human. Know that you don't have to be perky-awesome-crafty-Jen all the time. Sometimes it's okay to be I'm-not-okay-but-I-will-be-Jen.

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  114. I'm sorry Jen.

    Maureen

    P.S. It was great to see you in Pittsburgh!

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  115. I'm so sorry that the changes haven't helped. I know it's hard when things work out that way :(

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  116. I actually am a little encouraged that I am not the only one who feels like this at times. I too feel like I've tried so many things, tried so hard for so long only for too much disappointment. Unfortunately I doubt that will make either of us feel too much better, but we're not alone at least.
    I hope you have more good days soon.

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  117. I know this isn't what you want to hear but.... patience. Cpap machines, diets, exercise routines, any positive health changes take more than a month to work. There's no wonder pill that makes everything better, goodness but I wish there was. Don't give up yet - give your body time to adjust and purge poisons built up in your cells, give yourself time to adjust to having a thing on your face (and talk to the doctor about what could improve it.) I've had to adjust to MS, arthritis, and a broken wrist that will never be quite right again. It sucks. It sucks alot. Some of the therapy things HURT. But as long as I stick to them, in the long term I get a little better, or at least maintain. But the key is long term. Nothing works in a week or 2 weeks, all of them take months.

    One thing I would really definitely do - find a craft like china mosaics that involves smashing something into bits and spend some happy smashing time.

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  118. I'm not sure if anyone has already said this, but my husband had panic attacks after he FINALLY got his CPAP machine (also after months and months of runarounds), so he switched to a vented mask and now its working great. We almost gave up on the machine so many times but it was worth it to try different things until we found what worked for him.

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  120. I've had some bad days recently, grandpa is in the hospital, new neighbors, kid being a twerp and I finally broke into tears because "Gosh Darn it, why don't people make 22mm watch bands in more colors/materials for women?" So reading your post helped remind me that I'm not alone in this struggle and that sometimes it's the most nonsensical thing that causes you the most frustration. Sending you warm fuzzy hugs and hope that things will get better. I saw an article recently mentioning hoseless CPAP machines, so hopefully those will be available soon!

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

    Also, whenever I'm feeling really stressed, I try to remember Jared Padalecki's "Always Keep Fighting" motto/campaign to remind me that there can be better days and this is just one small roadbump. - See more at: http://www.epbot.com/2015/06/getting-used-to-disappointment.html?showComment=1434851590465#c1380568923172986274

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  121. Dear Jen - it sure seems that life is handing you a bunch of green, rotten, dinosaur eggs right now. I am so sorry to hear that your APAP machine isn't working out but please keep trying. Learning to deal with the machine and all the b.s. that goes along with it is necessary as breathing is kind of important..... Wear the mask for however long as you can stand it right now and work your way up to using it for longer periods of time. The good news is that the masks bounce quite well off the wall when you throw them! Sorry to hear that Lily is over grooming again, I'm sure the onesie will help. Hugs to you, John, Lily and Tonks.

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  122. Jen, you're an inspiration. Not just for the exciting things you share with us, but for your courage to share the tough stuff as well. Hang in there and know that there are a lot of people rooting for you, John, and Lily.

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  123. I have sleep apnea. Went and did the overnight test at a sleep place and everything. But I know for me, the mask would just increase my anxiety. So I totally feel you there. I haven't had a good night's sleep...ever? I don't have anything else to say except, Im thinking good thoughts for you and the kitty. And maybe, like me, a little afternoon nap will help!

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  124. Have you looked into raw feeding diet for her? If you find forums/sites with people who raw feed their cats maybe they will know the symptoms. It's a bit overwhelming to get in to at first (my 90lb dog is raw fed) but if there is the slightest chance it will make a difference it might be worth a shot. Just make sure you do plenty of research before getting in to it. Look into Raw Feeding Miami. They ship everywhere and the are very well informed. I will also help out with any questions you have if you consider the option.

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  125. Well... i typed out this long, well-thought-out response and it didn't post. How rude. So here we go again! Heh.

    Oh man Jen. I have followed your blog for quite a while now and I have always identified strongly with your anxiety struggles, since they appear to mirror mine. Mine cropped up out of nowhere, have left my life in what feels like shambles, and lately has been completely preventing me from getting any sleep. I'm constantly exhausted. I also have been using the occasional Xanax but prefer alternative methods to controlling my anxiety (or at least getting it to GIVE ME A BREAK ALREADY, jeez!). I don't like how pharmaceuticals make me feel.

    BUT! As awful and hopeless as that sounds, I have found that there are a few things that help. One is simple: stretching. I was dubious but desperate and after reading an article tying tension in the hip flexor with anxiety, I gave it a shot. I'm not saying it was wonderful and magical and made my crippling anxiety disappear but it did help for sure. Basically do a lunge as deeply as you can and hold it for 30 seconds on each side, breathing deeply. Like I said, it's not a magic thing but I do use it as a tool to help get past that horizon of terror that I get with panic attacks.

    Another thing I've found to be useful is establishing little things to remind myself that I'm ok. It's weird and maybe a little messed up, but hey. It works for me. I check my pulse. As long as my heart's beating, I tell myself, I will be ok. I focus on breathing. As long as I'm breathing... oh, you get the idea. I also have a little mantra that I repeat to get myself through. My grandmother used to tell me when I was but a wee kinder that "this too shall pass". No matter how awful you feel, knowing that it will eventually be over and a thing of the past is a small comfort in the storm.

    All that being said, I'm sitting here on 2 hours of fitful sleep. So like I said, not magic. Just tools.

    Sorry for the ever so long-winded post, just wanted to share some tricks I've learned over time. Big giant hugs to you and the Lily, I hope you both get some much-needed rest and relaxation! Hang in there. Girl, we got this!

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  126. I'm so sorry you're going through this right now. I know it will get better, and you do too, but it stinks righnow. I hope better comes soon.

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  127. Please see your dentist about getting a dental appliance for apnea. Not all dentists are certified to make these, so research qualified practitioners. It is fitted to you and you will not require a CPAP machine.

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  128. I have sleep apnea too. I'd stop breathing hundreds of times a night with hubby listening for me to startle and start breathing again. What has helped me get to sleep ALWAYS is to listen (with or without earbuds) to a hypnosis CD from Patrick Marsolek. http://www.innerworkingsresources.com/node/50 I don't know what is says after the first few minutes because I am always asleep. I bought a second one for emergencies and have it saved on my computer too (if I broke or damaged the first). I use a CPAP with a humidifier along with the 'Darth Vader' mask (Mirage Quattro w/dial for adjustment). The CPAP has a ramp feature so it ups the pressure gradually. I also bought the Arden Innovations Hose Lift to hold the hose and oxygen tube up and away from me. I spray my nose with Ayr Saline Nasal Mist 10-15 minutes before bed, then put either gel eye drops/lubricant or saline in my eyes. You can get gel and cotton pads to keep the masks from rubbing. (My nose was raw at first and my cheeks developed inverted pimples where the strap rubbed.) http://www.cpapsupplyusa.com/cpap-accessories/cpap-comfort-and-cleaning.aspx I was surprised when I was told I shouldn't tighten the mask too much and that I could get a different style mask to fit my smaller face. I've also figured out that it wasn't the gluten giving me issues... it was the corn syrup (aka dextrose, polydextrose, corn sugar, hydrogenated high fructose corn syrup, etc.) When I avoid it I breathe better with no wheezing or coughing. I was also told that my asthma inhaler should be avoided at night because it causes insomnia. Good luck

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  129. I haven't read all the comments so hopefully this isn't a duplicate. When I first got CPAP I was told to wear the mask around home during the day (without the hose). It felt very silly, but did really help me get used to the feel of it on my face.

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  130. Jen, you should try a CPAP PRO mask. It's a mouthpiece and nose diffusers, but NO headstrap. I HATED my machine until I switched to it as my "mask"; now I love it.

    And as someone else said, hopefully this isn't a duplicated suggestion.

    And beyond that, here, have a hug (((Jen))), because all this shit is super frustrating and no suggestion in the world can alleviate that.

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  131. You've received a lot of advice here, which I'm sure can be overwhelming on its own, but the health similarities between Lily and my own cat are so striking I want to share what I've learned in case it might be of interest to you.

    My cat is also Siamese, also suffers from a poultry allergy, and also obsessively groomed to the point of fur loss and bleeding. This went on for 5+ years without any clear reason or lasting solution, and the vets couldn't offer any real guidance. We tried changing his food to a non-poultry protein ("is he itchy?"), putting him in a Thundercoat ("is he anxious?"), using a collar like Lily's ("has he developed a habit that needs breaking?"), rotating/introducing new toys ("is he bored?"), paying him lots of attention ("is he lonely?")... All with only temporary abatement to the grooming. (though he is still on a poultry-free food)

    For the last year, though, we've developed a routine that has *crossed fingers* worked solidly. Every week or so, we give him a bath, shampooing with an oatmeal pet shampoo and conditioning with (vet prescription) ResiCORT. Additionally, each morning he gets 5mg of Zyrtec (half a 10mg pill) and 10mg of (vet prescription) Amitriptyline, the lowest dosage available of this calming medication. He is a large cat (16 pounds, and fit!), so Lily could probably take less for the same effect.

    It took about a month for the adjustment to really take hold - he was sleepier than normal, but no other notable side effects. After that first month, though, he was back to being the same happy, energetic cat, but without the obsessive grooming! I had worried about him being a drugged, sleepy creature for the rest of his life, but this wasn't the case at all.

    I hope this information is able to help Lily a bit, too! It's just such an added stress you don't need on top of everything else. If only the kitties could tell us what's bothering them, we'd be saved so much heartache :)

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    1. Hi, I just saw your comments about overgrooming with kitties. I had one cat who was scratching the fur off of his face. They did food allergy testing and he was allergic to almost everything in cat food. We put him on fish only, and although it was expensive, we were able to remove the "cone of shame" in a couple of months and he had no further problems. Jen, I hope Lily's problem is just momentary, but food allergies might explain something. This is my first day reading this blog (I'm a CakeWrecks addict, though). I'm so sorry things are not working out for you and you are suffering. Know you can count on my prayers for you...every morning before I open Cakewrecks!

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  132. So. I'm a fellow sleep apnea sufferer. I was diagnosed a few years back with severe obstructive sleep apnea. Basically my doc said if I tried to continue to sleep without a CPAP, I'd not be alive in short order (not to scare you, I have a bad case of it and other health issues that exacerbate it!). And I too wear the mask of overwhelming humility every night. I feel like Snuffaluffagus and Darth Vader had a love child. It's totally sexy and I just hope my future bed partners don't laugh too hard! My advice is to keep trying. Once you get the straps adjusted and the airflows tweaked, you WILL feel better. I don't usually have panic attacks, but I do sometimes have small episodes when I have the mask on. I find if I pull the mask away just a little so I can feel the air rushing on my face, it helps. A lot!

    Anyways, I just wanted you to know you're not alone. Please don't give up. Your health is really worth it!

    Oh, and just so you know, the women's masks are slightly smaller, so you don't have as much air leakage. I could do without the pink tho!

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  133. Late to the party, but wow I'm sorry things have been so crappy lately. Just wanted to add that I've been taking OTC sleep aids (Tylenol pm or Advil PM) for ...decades and have no health problems with it at all. I often take half a pill and that's all I need. The active ingredient is Benadryl which works like a charm and is a decongestant. I hope you and Lily feel better soon!

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  134. No sugar?
    http://www.nature.com/nature/journal/v482/n7383/full/482027a.html

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  135. Jen, I'm a fellow sufferer - I've got sleep apnea, PCOS, low thyroid, diabetes, anxiety/panic attacks, psoriasis (which flares up when the anxiety is bad), and something that is either narcolepsy or excessive daytime sleepiness (to the point that I can literally fall asleep in less than 2 minutes, anywhere, anytime). I use a "Lady Zest" mask with an auto-PAP - it automatically adjusts my pressure at every breath. That may help you - it's a lot more forgiving than APAP or CPAP. I also use the humidifier, but not with the heater turned on - in Florida, you seldom need the extra humidity by much.

    Don't give up on the sleep apnea - it's nearly killed two close family members, and is VERY serious, but treatable. It took me about three weeks to get used to it, and I still fidget a lot with the straps. A buckwheat pillow (I'm a side/stomach sleeper) and a fan on my bedside table blowing right in my face (so that the air blowing inside the mask and the air outside feel the same) helped a lot, as did getting a nasal mask but NOT a nasal pillow mask. The nasal pillows made me feel like I couldn't breathe at all, and the nasal mask just makes it easier. A saline nasal spray will help you get used to it, too.

    **HUGS** You have this - it just takes a LONG time to get there. I was a relatively healthy person until I hit puberty - then I gained a ton of weight in a year, had irregular periods, was tired all the time, couldn't focus, and started collecting diagnoses from there. I had to really fight to get some of my symptoms recognized. You'll get there, too. Let the hubs handle some of the rough stuff, too - I have had to advocate a lot for my partner over the years, and sometimes another person saying "yes, I've seen that happen to her" can make a skeptical doctor take things more seriously.

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  136. Jen,
    Keep your head up. You are stronger than you think, you have an entire support network behind you and we love you. It may seem there is no light at the end of this tunnel, but there is, no tunnel goes on forever, the end is there even if you can't see it.

    In the immortal words of Dumbledore “Happiness can be found even in the darkest of times, when one only remembers to turn on the light.”

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  137. I wish I could do something to help. Your blogs bring me so much happiness, and it's not fair that I can't do anything in return.

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  138. I know there is really nothing I can personally do to help, but I will be sending prayers up for you! I love your blogs, and they have kept me going through some bad days. Just remember that everyone here loves you and are here for you!!

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  139. Dietary changes are a huge fad now for some reason, so don't feel bad that you're not experiencing the "it's changing my life and now everything is amazing" effect of going gluten-free. Most people don't actually experience that, and the ones who do often have an actually gluten allergy or Celiac. My SIL tried gluten-free for her Hashimotos, and it never lead anywhere. It's very easy to go FAR down the rabbit hole of dietary changes and "clean eating." The most important thing is to take your doctors' advice and be moderate in what you eat. Don't get caught up in the idea that by eating the "perfect" diet that your health and life will somehow drastically change.

    Sleep apnea treatments just take a long time to work sometimes. Like you said, there's the whole getting used to the mask while sleeping thing. But there's also nearly a lifetime of sleep deprivation to make up for. If you stay up all night for a week, and then sleep in on Saturday, of course you're not immediately going to feel better. Sleep debt takes a while to pay back, but don't give up hope. There are, I think, lots of different TYPES of masks, and different ways to wear them. I'm sure you'll find something that works for you, and eventually you'll get used to it.

    Sorry you're having such a hard time. My life always seems a lot worse when I'm sleep deprived. It's strange how much difference that one thing can make.

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  140. since i have no magic words to make it all better, i can only send love.
    xo

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  141. Sending hugs from Washington State.
    --Piper P.

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  142. There are tricks and tips to get used to the masks and machines. There should be a 'ramp' feature on your machine that lets it get up to full blow gradually so you have a chance to get relaxed first. There are also many styles of masks and finding the one that works takes a while. You really should have the overnight lab test. You may need a sleep aid for it but the techs will adjust your air flow until they get you at the right level. I know that that first night in the test I slept like a rock because they got the air flow right. You have fight for your right to party.....er um sleep. Feel free to email me and I'll share what I've found to help.

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  143. No comforting words or magic cures, but I will invite you into my rather large boat being dashed about on the sea of disappointment. Hugs from someone who is having a hard time coping, too, and here's to hoping these darn rain clouds show their silver linings.

    Keep Lily close and give John plenty of hugs...contact with other living creatures does help. You've got a large internet following, and there are actual real people at the end of the inter-webs!!

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  144. I went through the same thing getting used to my CPAP machine. I found a few tricks after talking with friends that use them, and its now been ... geesh, 4 years since I first got it? And I can't sleep without it anymore. If I forget to take it on a trip with me, I'm miserable. So let me just say that it CAN get better!

    One thing that might help a lot - I have problems with my sinuses being clogged up when I go to bed and lay down, even with the humidifier add-on for my CPAP. I found that if I used Breath Right-type nasal strips it helps *immensely* with breathing. I don't have to breathe as hard to get the full benefit of the machine. The headstraps do take some getting used to, especially if you get the night sweats like I do. Another trick, if your machine has the humidifier attachment, is a drop of menthol oil in the water (and please make sure you're using distilled water in it, tap or even filtered water will kill your sinuses) helps a lot - and helps you to stay asleep longer. If you don't like menthol you can use other kinds...cinnamon or vanilla work wonders too.
    Victoria/Justine above me has it spot on with the air pressure, too. Sometimes that has to be adjusted, especially after you get used to using it. Everybody I know who has one (me, my best friend, my dad, several others) had to have the pressure increased once they had used the machine for 6 months or so.

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  145. I couldn't get used to the CPAP either. I wound up giving it away because I just couldn't get used to something on my face; I'd panic and rip the thing off. I later had sinus surgery that fixed my deviated septum and cleared out my sinuses, so I think things are better now. I don't want to go in for another study.

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  146. A friend of mine posted something about a small CPAP device that is not a mask, it just sits over your nostrils, but now I can't find his post! I'll come back if I find something but I wanted to mention it so you can search and see if you can find it. Looks so much better and easier to use than those masks! Good luck!

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  147. All I can offer you is a virtual hug all the way from Germany (I think you're the bee's knees, I truly do!) and words from the wisest fish I know: "When life's got you down, you know what you've gotta do? Just keep swimming, just keep swimming, just keep swimming, swimming, swimming ..."

    Here's hoping that things look brighter soon!

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  148. I didn't read through all the replies (and also do not remember from your previous postings regarding this topic) but I came across this issue some years ago and for certain types of sleep-apnea (I think they are called the "blocking" ones as opposed to the central/cerebral ones) the condition sometimes can be improved with certain types of training, like for the tongue-muscle.
    If you are the first type, maybe you could do some research in that direction?
    Best wishes :)

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  149. I hope you are feeling better! I'm sorry that life is sucky right now, just know that it will get better!

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  150. I am sorry. Big hugs Jen.
    ~Yet Another Jenn

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  151. Hang in there, Jen! You have crowds and crowds of people who love you, even if we've never "met" you. Sending you a grin and a hug :)

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  152. I don't know if this will be helpful or something that would work for you but my mom also had terrible problems with the museum. She found out about a mouth guard type device that also works for people with sleep apenea and it worked great for her. That may be something you could consider. Only 1 doctor around here (Tampa) did it so it may not be something your doctor offered as she had to search for a while to find someone who did it.

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  153. Jen, I'm so sorry. I can't fully relate, as I don't have anxiety, but the occasional sleepless nights are frustrating enough. I can't imagine how hard this is for you. I want to share with you something that I hope could help. Have you heard of Plexus? I have heard amazing testimonials about their natural supplement products! While they can't make medical guarantees about how their products can help you, people have been finding relief from anxiety, brain fog, sleep issues, stomach and gut issues, and more. It is a direct sales company, but I am not an employee, and I'm not sharing with you just to make a sale. I just hope it can help you. They do have a 60 day money-back guarantee. Here is the website for the distributor that I have purchased from:

    http://www.realfoodetc.myplexusproducts.com/

    And here is her facebook page where you can message her. I'm sure she'd be happy to answer any questions and help you choose which products may work for you.

    https://www.facebook.com/RealFoodEtc?fref=ts


    Please, please consider trying out some of the products. I realize and understand that prescription medications are sometimes necessary, but if the Plexus products (which can sometimes provide results that allow people to get off of their prescriptions) work for you, wouldn't you rather use natural supplements in place of medication and prescription drugs if possible? I hope you can find something that helps.

    Best wishes,
    Meghan
    nutmeg16 at sbcglobal dot net

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  154. My husband has been trying to sleep with a much needed bipap mask for months now and I have such sympathy for you here. It's so frustrating and I just want to give you the biggest of mental hugs. And loving pets for Lily!

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  155. Just wanted to send some encouragement and support from good ole' Richmond, VA. I hope that things turn around for you soon and that you can find some solutions to your problems.
    Thanks for all that you do for us!

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  156. Just wanted to let you know, from a fellow GF nerd, that I've heard you can wait up to three months to a YEAR to see any significant change in your gluten sensitivity. That's how long it takes for the bowel to rebuild itself after the damage done to it by gluten. :( I can totally understand needing to see change sooner, but I just thought I'd let you know.

    Big hugs, feel better soon! What you go through is so similar to a lot of what I'm dealing with, too, so know that you are helping others by being vocal with your struggles and triumphs <3 you can do it!!

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  157. Oh, Jen. I am so sorry to hear this. I know how tired and cranky I get when I miss just *one* night of good sleep, so I am impressed that you are still able to function at all. I am praying for God's healing and comfort and a restful night's sleep for you tonight.
    - Jonelle

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  158. Sorry you're having it so rough. It's still a ways off (due out 2017) but there's a micro-CPAP device coming out that has no mask, tubes or straps. Might be worth looking into? Airing CPAP

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  159. Have you thought of using a baby monitor thing? The Sunza Hero detects lack of movement/apnea and vibrates to snap the wearer out of it. Not associated with me at all but I'm a newish Mom and there are LOTS of products out there to detect apnea...this is the one one I've seen with a vibrate function though. And it's small and clips on. It might be better than those awful suffocating masks!
    Otherwise BIG HUGS for you and snuggles for Lily xx

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  160. When I got my CPAP I could barely use it. The full mask sent me straight into a panic. I used the nasal pillows for the first 2 years it took a while to get used to it but I did eventually. Now I can use a full face mask with little trouble and switch off between the two masks so I don't get any skin irritation.

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  161. Someone has actually designed a hose-free micro c-pap machine. It's on Indiegogo right now and had thoroughly surpassed its funding goal. https://www.indiegogo.com/projects/airing-the-first-hoseless-maskless-micro-cpap#/story

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    1. I was totally going to mention this! I saw it and thought it looked so cool! I hope it works

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  162. Jen, I've been following you since before your Epbot days, and have come to love Epbot so much more than Cake Wrecks. I recommend your blog to many of my friends, especially my nerdy, geeky friends, and those with anxiety. You provide so much, to so many people, and I am so thankful for your openness, and for helping me to embrace my geeky side. For the past several months, as you've been sharing about your health issues, with the gluten and dairy thing, especially, I keep thinking about something that might help you. But I've been hesitant to share because I don't/didn't want to come off as someone trying to sell you something. So I hope it doesn't come across that way. With that being said, here goes.....for years I struggled with lack of energy and even my anti-depressants didn't solve the problem 100%. Back in October, I took a leap of faith and decided to get back into exercise. And I am not an exerciser by any stretch of the imagination. Even today, I've been putting of my 10 minute workout ALL DAY. In addition to the exercise, I drink a meal replacement drink every day. The drink has been a game changer for me. My body problems aren't as bad, not so many bowel issues, etc., and I have more energy. Anyway, I don't know if it's something you'd be interested in or not, but every time I read one of your health related posts, I immediately think about Shakeology and wonder if it would help you. And the best part? There are two flavors that are lactose free! Anyway, just a thought.

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  163. Hello Jen, I've been a fan since before Epbot started. I'm sorry to hear what you are going through. I hope things get sorted soon. You are lucky to have such a wonderful life partner at your side. I'm not sure if this will work, but have you ever tried Reiki (please do lots of research on this before) and yoga?

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  164. Oh, Jen, I am so sorry to hear that Things Are Not Going Well.

    (I do know plenty of folks that DO get used to their machines, so I have faith that you can too!)

    I am thinking good thoughts for you, and hope that things get a little brighter for you and yours.

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  165. Oh, Jen, I am so sorry to hear that Things Are Not Going Well.

    (I do know plenty of folks that DO get used to their machines, so I have faith that you can too!)

    I am thinking good thoughts for you, and hope that things get a little brighter for you and yours.

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  166. Hi Jen, I am also a recent recipient of the nighttime torture device known as CPAP. It's been a month now and I am still getting used to it. However, the good news is that I AM getting used to it and I am starting to feel like an actual human again instead of some half dead creature slogging through the day. I also am claustrophobic and anxiety prone so I have found that taking my Ativan about 60 mins before I put on my CPAP really helps me deal with the creature on my face. It DOES get better, I have had to try 4 different masks before I found one that fits well and I use a fabric cushion that you can buy to keep the plastic off my face and stop the sweating. I also turn the tube temp all the way off and don't use the humidifier option, it seems to work better for me that way. Just hang in there, it will get better and you will feel better.

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  167. I'm late to the blog post so who knows if you'll notice this one. I wanted to tell you. I have a CPAP and while it took me months to get used to it (about 2) I now go to sleep and sleep until my alarm or my children wake me nearly every night.

    One thing that helped me was getting a full face mask - I was a mouth breather and the nose mask made me feel like I was suffocating if I tried to breath through my mouth. The full face is not stylish but it made it much easier for me to adjust too.

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