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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/22/13 4:34 P

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We hare having a "Winnie the Pooh and the Blustery Day" today 50 miles off the Oregon Coast. I am loving it, but worrying about our friends who live up and down the beach. I haven't checked their weather yet, but imagine they are hunkered in with hot chocolate, good books and a roaring fire in the fireplace. Oh and don't forget the hand knit afghan or their favorite crazy quilt.

This is a perfect day for knitting or writing or playing on SP.

So, because we are a medical team and are one of the teams SP refers to new members, It is my duty to not let this thread get too bulky so newbies can find us. We get about one newbie a day. Mostly they don't have their page set up and most don't follow through or find other teams they would rather focus on. All that is okay as our goal is to be there for the one in ten person who benefits from the support or possibly just a link. This team is to be used as needed. With that said, I am going to close this thread and open an Autumn thread so newbies and oldies that may have forgotten about us can find us through a new e-mail alert.

Active and loyal newbies, I need your support on this team to help those passing through and I need you to follow me to www.sparkpeople.com/myspark/team_mes
sa
geboard_thread.asp?board=0x10648x549R>95074
emoticon Thanks for going to the new thread.

Edited by: GRAMMACATHY at: 9/22/2013 (16:35)

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/22/13 8:54 A

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Well, here we start our first day of Fall. It is not my best season. We were out side yesterday getting all of the flowers that have just died off already.

It is so nice to see most of us getting used of our masks and breathing equipment now. I have the full mask too and I will try the idea of the material in the back of my lower head too.

I had shared on here a few times now how I use the mole skin that they use for our feet on the bridge of my nose. It took me so long to get used of the mask there. I guess I must have gotten a callus there now and with the mole skin, all is well...





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ELLEN1159's Photo ELLEN1159 Posts: 317
9/22/13 8:09 A

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Today for the first time I posted in the "How DId You Sleep Last Night" thread. I feel like I graduated from the kids' to the grownups' table! Another 7.5 hours of shuteye with the mask on. This time, I don't remember if I woke during the night because I didn't look at the clock to see if at least four hours had elapsed.

With all the problems and mental and emotional resistance I had when I first started using this machine, if I can do this, anyone can. My sleep was not perfect, I had problems with large leaks during the second half of the night but I slept through it, my numbers were good, and these problems with the mask are manageable.

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TOPPROSS's Photo TOPPROSS SparkPoints: (787)
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9/21/13 6:26 P

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Hi Grammacathy - Thank you for the rollerskates! I have a full face mask so I do occasionally wake up with red marks and dents but I usually lose these once I've had a shower!

I benefit from the "National Health Service" in the UK where a team of specialist nurses work with me to find the best and most comfortable equipment - they provide the mask, CPAP machine and all that goes with them (we meet twice per year but I have emergency contacts if something should happen to my machine/mask).
I've tried a few different masks but the best I've found are ResMed, the more recent the model, the better the mask. Mine is comfortable and secure all night long. I have always slept with a folded napkin/cloth tucked underneath the strap that comes across the back of my neck - for me, this eases the stress/discomfort and makes for a more comfortable night.

54Jimmy - it does take some getting used to and you will progress through cycles of hating/accepting then (eventually) loving the mask! To me the ritual of putting it on is a time to unwind and formally close the door on the day. You'll eventually become more comfortable and less resistant and when you manage that then you'll feel more refreshed and rested than you have in years. It's just taking small steps until you get there, but get there you will.

Edited by: TOPPROSS at: 9/21/2013 (18:26)
Fed up of being too fat to function ....

Ross


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9/21/13 4:53 P

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Kathleen - I hope the new mask works wonders for you!!

Merri, Cathy - Again, thanks for the warm welcome to the team.

Cathy - Give me about another month on therapy and I may be ready to assist in Leader duties. I sometimes delay on replies but practice, practice, practice. And I also would like to thank you for the challenge team recommendation, "Better Sleep". I started it two days ago. This challenge will help especially after this garage sale we are having is over tonight!

Toppross - It is great to have another male presence here. I'm sure that I will be looking to you for advice. I am still in my struggling stage of getting used to CPAP and still gaining time with it every night. I hope to get to and maintain 7 hrs a night. I am noticing results. I am sure I will get there when my sleep improves. I wake often being 'mask aware'.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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9/21/13 3:39 P

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My full face mask arrived in the mail today! They didn't even ask me to send the other mask back. I now have a nasal pillow mask & a full face mask. My plan is to only wear the full face mask if I am sick. Although I am thinking that maybe I'll try to get use to it on the weekends.

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/21/13 1:00 P

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Thank you for the love and support. I did kind of spew my brain in my last post. Just trying to work some ideas out.

I am excited about all our new friends and grateful we have some male input again. Bob and Doyle are leaders, but I know they are/were both fighting some serious health issues.

If any of you have a hankering to be a leader let me know. I usually like about seven to ten names of leaders on the right of this page. Merri is a leader. Don't let her fool you. She is just trying to stay anonymous and avoid the privilege of being able to attach sticky topics and send team goodies.

Toppross, Welcome to the team. About 10 years ago after fighting the cpap mask all night the first night, I woke in the morning feeling better than I had in years. Did you have to fight with rigid masks and huge forehead dents too?

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/21/13 9:30 A

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Cathy, For sometime it was just the two of us on here talking to each other LOL...now we have all of these new members knocking at our most welcomed door!!!

Welcome Ellen, Toppross, Tracy, Jimmy, Kpa1b2 & Soymariposo!

Wow, what a nice group of people we have now and we have the same sleep apnea problem and we don't feel alone when we can come on here and get so much advice and you can feel so comfortable sharing your experiences with us...WE DO understand because as the saying goes "We haven't walked in your shoes"

I am always open to suggestions and I am still learning. Cathy has told me so many good ideas and I know she will keep doing that for all of us. Maybe you new ones have some good info for us too....

Take care and I am so pleased to read where so many of you are getting so used of the mask now and are getting more rested as time goes on. We know we need our equipment when we wake up and yup, we are still here to start a new day all rested and our loved ones feel more at ease too with us using our equipment every night....Merri





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ELLEN1159's Photo ELLEN1159 Posts: 317
9/21/13 8:51 A

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Welcome Toppross. I got my diagnosis of severe sleep apnea this past April (my AHI index was 108 events/hour!) and my machine in May, but unlike you, it has taken me over four months to go from using it one hour a night to 7.5 hours last night, the first night I actually kept the mask on the entire time I was in bed. My pressure needs are high, EPAP 15, IPAP 24, making the air flow seem like a hurricane to me. I'm also claustrophobic, so I've switched from a full face to a nasal mask and that seems to have helped. It's good to meet you and good luck with meeting your weight loss goals. My initial aversion to this machine made me start a low fat, vegan diet back in June, where I lost 11 lbs. in the first two weeks. I had it in my mind that I would lose enough weight to make the CPAP therapy unnecessary. Fortunately, I stuck with the machine and the support of people on this forum and a couple of other websites have helped me adjust to something I thought I would never, ever get used to.

Cathy, the most important thing is to take care of yourself. You can't help others if you don't take care of your own health first. You are such a compassionate person. I hope you can find compassion and comfort here from the rest of us.

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TOPPROSS's Photo TOPPROSS SparkPoints: (787)
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9/20/13 6:10 P

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Thank you all for the words of welcome and support. I'm new to SP but a seasoned CPAP user, if I can help with anything please let me know.

Edited by: TOPPROSS at: 9/20/2013 (18:10)
Fed up of being too fat to function ....

Ross


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TRACYDUKA's Photo TRACYDUKA Posts: 951
9/20/13 10:08 A

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Hello, Topross! I'm not new to sparkpeople, but I am new to the CPAP. I just got mine in Feb. and like you, I slept like a log pretty much from the first night. The difference in my energy levels right now vs the last few years is amazing! :D

Tricky Tracy


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9/20/13 9:53 A

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Topross - Welcome! I am a newbie, seven weeks in to this now. In a short amount of time I have learned lots. Becoming a member of the Sleep Apnea Spark Team has been a major help for me. I don't just play in this pool but I am checking other sites to keep learning and finding assistance. The reality is I always come back here, just seems more friendly and personable..

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/20/13 9:07 A

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Toppross, Welcome to our newsy and helpful site. It is nice to see so many new members on here and giving us needed info and asking for info too.

I have been using my machine now almost four years. I was so tired of running to the ER at around 4:30 am not being able to breath, high blood pressure and irregular heart beat...I have used my machine every night since.

I always get an A+ from my sleep apnea dr when I go there once a year now. It used to be every six months. I have graduated to one year!





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TOPPROSS's Photo TOPPROSS SparkPoints: (787)
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9/19/13 6:04 P

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Hi, I've been diagnosed and using a CPAP for 10 years. When I first realised I was suffering I couldn't drive, I was asleep at work, I couldn't be trusted to cook at home (in case I left the gas on or fell asleep when something was on the stove). When I went to my Doctor - he laughed, I was at my wits end and he laughed. For me the CPAP was literally a life saver - I simply can't sleep without it. When I first got mine my Consultant Doctor said that it took a certain "determination and effort" to stick with it and I must have seen that as a challenge because almost from the first night I slept like a log.
Anyway - good to meet you. I hope to be an active contributor (I'm new to SP but feeling my way around!)

Fed up of being too fat to function ....

Ross


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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/19/13 5:34 P

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Oh Cathy, What a sincere story you are telling us about you life right now. I do feel so overwhelmed that you can confided in us like you do. That is what we are here for..Our dear friends and knowing you are so comfortable in tellingl us your deepest thoughts and feelings.





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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/19/13 1:34 P

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It feels like Autumn again. I can take longer walks because the temps are cooler and the rain is frequent but brief. Two weeks ago we hit 90 and this week we are in the upper 60s. I haven't been forced to bring out the electric blanket yet, but uncovering to get out of bed in the garage is cold. I need to change something about this lifestyle, but not quite ready yet. I haven't finished something here and not sure what. No that isn't true. My granddaughter is my best friend and I want to keep her happy through high school. I also want to help my daughter. thinking about a trial run of sleeping at the office. I also think I need to keep downsizing my possessions and that is easiest to do here where I am slightly uncomfortable.

I think I am preparing for my traveling lifestyle. Slowly but surely. It is wonderful to have this freedom. Lest anyone think I am deprived, I could be living in a new 3700 sq. foot house with son and they would never know I was there or I could move into the beautifully decorated apartment with my husband and care for him again. However, this is about my health and goals and I am quite happy in the garage with my little dog. Just cold and I like to whine about it sometimes. I am doing this to get out from under debt from my illness and to support my DD and GD as they need it.

Edited by: GRAMMACATHY at: 9/19/2013 (13:37)

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/19/13 8:23 A

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Our weather has sure been changing almost with the days here. We were quite cold here last Sat and Sun and now today we are going to get into the high 80s once again....

Not much going on here. Out of a week, I have almost seven nights of good sleep now. Such a good feeling as all of you know by now...

Cathy, You go there girl. It is a good idea to get all that you can done before it gets cold out there...





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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/18/13 10:38 P

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I blame the lack of chronic sinus infections on the clean air we are breathing all night long. That was a blessing to not be fighting those every spring when the trees bloomed.

Ellen, Have you tried the sleep challenge yet? It helped me. www.sparkpeople.com/myspark/challeng
e_
detail.asp?challenge=1



Painted the garage door today and touched up a couple spots inside the house. Studied Spanish. Think I am going to really like this program and I can pay for it a month at a time. I think I will try a monthly trial.



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9/18/13 7:07 P

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I got fitted for a full mask this afternoon. I think I'm within my 30 days & my technician thought that the home medical supplier wouldn't ask for the mask that I've been using back. He said that if they did to say "no thanks" as I just want the full mask in case I get sick.

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/18/13 9:09 A

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Morning to all of my Sparkler friends:
I guess I didn't get on here yesterday. We have been busy trying to get my DH another ID card from him being in the Navy. What a process we are having to go through. Since he was issued one way back in 1996, it seems like a lot of things we can't get anymore.

It is nice here this morning but they are talking for rain here again. We really need it tho...

Our DS is finally on US ground. Each trip from Afghanistan is getting harder and harder on his body. He is 48 now and this flying is catching up with him. Now he wants to do four more years in Afghanistan as a contractor LOL...We will see....

I did get my new supplies from the new supplier now. I got one of each thing as I am not sure what is going to happen come Jan. This new supplier seems so nice too. A lot more helpful than the old one.

I too wear the full mask and yes, I haven't had any problems either with a stuffed nose. I think my pressure blows everything nice and clean too LOL





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9/17/13 6:39 P

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I just talked to my doctor about what to do when I get a stuffy nose. He told me to get a full face mask. So, I'm going to go to the mask clinic tomorrow and try on a full face mask so that when my insurance allows me, I'll get a full face mask to use for when I have a stuffy nose.

I didn't get sick at all last winter, knock on wood!

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TRACYDUKA's Photo TRACYDUKA Posts: 951
9/17/13 10:28 A

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i've noticed since I've gotten my cpap, I rarely have a truly stuffed up nose. I think it is partly because my pressures are so high that it forces my sinuses to clear out. Actually, now that I think of it. I've hardly been sick since I got my cpap.....

Tricky Tracy


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ELLEN1159's Photo ELLEN1159 Posts: 317
9/17/13 9:30 A

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I went for 6 hours last night, from 11 to 5 a.m., unfortunately when I woke up at 5 I couldn't get back to sleep for another hour at least. Fortunately, I'm unemployed right now, so I was able to nap for a couple more hours after my daughter left for school. Going to start training myself to hit the sack 15 mins earlier so that when I do get work I'll be able to handle an early start.

Cathy, good for you for getting your dining room back! My sister in law has been going to her parents' home on weekends, an hour drive each way, with her toddler and my brother to help her mom clear out their basement (40+ years of stuff down there, it's just overwhelming).

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/16/13 11:29 P

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Over the years my nose has learned not to get too stuffy. I wonder why that is. Now all colds settle in my chest. It is helpful for the mask not to have horribly stuffed sinuses.

For all you newbies, my daughter closed her boutique in August and the stuff has been piled high in the living room and dining room. Today the living room is clean. The dining room has only six boxes left in it. Feeling pretty good about my efforts. I started sorting DDs jewelry making supplies. She is off tomorrow. I hope she is inspired to continue organizing the dining room and putting her jewelry supplies where they belong.

Tomorrow I meet with VA, hubby, and his two daughters regarding who has financial control. I hope it goes back to his middle daughter.



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9/16/13 11:10 A

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Cathy - Thanks for the information. I went and cruised around ebay for a bit to see what they had for my mask. I also went to CPAP.com and looked at cheaper versions of masks there to get some ideas.

Ellen - thanks again for the encouragement. Yes, I am consistently getting 5 or more hours a night but as far as sleeping I am in hopes that will come soon. I'm having a minor set back with some congestion issues where I have to blow my nose a few times a night. After these episodes is when I get most of the leakage issues that seem to wake me up.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/16/13 8:51 A

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Cathy, I did see on one of my plastic masks where the cushion fits in, the little plastic part where the hose connects won't stay closed anymore. That is the first time that has happened to one of my masks tho...I have all of my hoses yet too. I do use the heated hose now tho. So, I gave the one that came with my set when I got it to our DD who has the same kind of machine too...





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ELLEN1159's Photo ELLEN1159 Posts: 317
9/16/13 8:34 A

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JImmiy, you're doing wonderfully! I missed a couple of nights this past week due to some kind of nausea from a virus or mild food poisoning, just couldn't put the mask on. I felt it the next day. Even though the straps are uncomfortable and I feel l like I have an octopus on my face, I am getting at least four hours of shuteye plus therapy, and it does make a difference the next day. For years I have set my clock radio to a news or talk station at bedtime, with the timer set for one hour. Now, I set it to a classical, jazz or inspirational (hymns) station so that I don't trigger my anxiety, and it helps. Last night a local colllege station was playing music from the 1930's and I found that easy to relax to.

Last night managed five and a half hours with the mask and got at least five hours of real sleep. The humidifier on my machine is set at 3 and I notice that the water is nearly all gone after six hours of blower time (I fill the reservoir to the max line).

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,275
9/15/13 3:09 P

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wow, I lost this thread. I don't know why that happens, but I often don't get the e-mail links for this team. Glad you all are doing so well.

Jimmy, I don't have insurance. I have masks that are still usable after five years. Currently, I have three masks which I rotate. The newest one is six months old and still looks brand new. I think a lot depends on your mask. The ones with the sponge fillers have to be changed out faster. I still have every single hose I ever got. None of them leak. So one of my hoses is over ten years old. The hard plastic part of the comfort gel mask can be used till it cracks. Ebay is a great resource. www.ebay.com/itm/Comfort-Gel-Blue-Na
sa
l-Cushion-and-Flap-Replacement-for-RR>espironics-Nasal-Mask-/261210209021
Watch your sizes though. The comfort gel mask by Respironics is one of the older style and cheaper masks, but it gets good reviews. Probably because is is simple. It is normally around $50. to $60. for the whole set up including head gear. I bought new cushions at Amazon for $13. including shipping. Nice not to have to replace the whole mask. Also the head gear for the full face mask works on the nasal mask, so I did not have to replace that. The expensive part is the hard plastic around $35. Nice to not need to toss those for years.

The other thing is that I have also replaced my parts at my regular provider if I happen to be going into that city. They give a huge discount so my expense is not much more than my copay was on my insurance. So, my advice is to talk to your provider to find out how they work and then research online for your masks or different ones that might be cheaper.

Merri, we are going to have to teach your son chair exercises or how to fidget on a plane. Glad he is home again.

This is a great website to search your masks
www.cpap.com/productpage/comfortgel-
ma
sk-phillips-respironics.html?gclid=CR>LfW_tWMzrkCFS3hQgodsRYAhA




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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/15/13 9:42 A

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Jimmy, I wash my mask each morning with Dawn soap and than put it in a little plastic container to dry with a paper towel under it to catch any extra moisture. I make sure my face is washed each night too as to get under sweat off during the day....Did you see where I had mentioned using my hair dryer each night on it too as I think it seems to soften the gel up some so that I can get a better fit.

Our DS should be back on US ground right now as he left Afghanistan early yesterday morning. He is going to Las Vegas first to see his x-wife. He has five weeks off between his new job over there...He is now 48 but he is like our little boy yet LOL...I guess we will never stop worrying. He is starting to have some leg problems now with being in the air so often and going so far at one time...





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9/14/13 10:48 A

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Thanks Merri - That's the info that I am after. I may need to try to bank a couple of these if I lose insurance or have a waiting period for other insurance.I am fairly good at washing my cushion and mask. I'll do that on about 6 out of 7 days a week. Not perfect but improving.


Last night, 6.2 hours, minimal leaks, AHI 0.9. This is all good. Now I need to work on actual sleeping.

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"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/13/13 8:50 P

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Jimmy, I am stretching my luck right now and am using the same cushion for over 1 1/2 months. I still think if we keep them clean and take care of them, they can last longer than what they say....I wash mine really extra good once a week with Dawn soap and vinegar and baking soda...I dump the vinegar and baking soda down my tube too..It is really cool when it starts bubbling up..





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9/13/13 4:31 P

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Jimmy, I'm amazed at how 1 night's sleep can affect how I feel! I've taken a 3 hour nap in the middle of the day, with my machine, not that that helped me at all. I'm sure that part of it is all the junk I've eaten this last week.

Oh well, the healthy eating will begin again and I have no plans for any more nights away from home with co-workers.

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SOYMARIPOSA's Photo SOYMARIPOSA SparkPoints: (3,552)
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9/13/13 3:33 P

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I'll ask see if I can get an answer from my rep, I remember her saying 3-6months clean gentle soap or even use vinegar rinse

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9/13/13 1:04 P

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Of actual sleep time of 4 hours per night for the last two nights, I should be quite sleepy now. I am more alert and energized than I would have been prior to therapy.

Kathleen - thanks for posting this reminder. Even though I still struggle through the therapy I still require frequent reminding of why I am doing this.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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9/13/13 12:32 P

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I was at a work retreat, an overnight stay, sleeping in the same room as a stranger. I didn't take my machine. I am so tired today! Guess it really does work.

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9/13/13 11:00 A

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Merri - How long are you able to use your cushions? I ask this because I may to seeking a different job and be without insurance for a while. I have asked some other folks and I never have been given an answer other than they had a few stocked up in their closet...

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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9/13/13 10:56 A

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My trend of 5+ hours a night on CPAP continues! The last couple of nights was aided by self induced over tiredness. I went to a movie at our discount theater and didn't get home until midnight on Wednesday. Then last night I went to the fair after work and didn't get home until 11:30. My times could have been more if I had more time to sleep, but I have to get to work...

I'm getting in to a routine / habit that is working for me. Once I nestle in bed with the machine churning away and the mask on, I set my Android device to Pandora and set the sleep timer to 30 minutes. I know that the station I listen to won't work for many but it does wonders for me. It is 'Apocalyptica'. This is mainly a Symphonic Metal station with a few mellow artists thrown in.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/12/13 8:15 A

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I had to get a new supplier for my Cpap supplies as they no longer want to take Medicare in our area. I had mentioned this to Cathy some time ago.

Well, I did contact the new co and am still waiting for them to get off of their butt and do something. The last supplies I got was last March 29th..That was three new cushions. Good thing I use mine more than one month and wash it every night...





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ELLEN1159's Photo ELLEN1159 Posts: 317
9/12/13 8:08 A

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Jimmy, I'm sorry the sleep doc didn't give you more props for doing as well as you're doing. It will come in time.

Last night I ratcheted up my sleep time from 5 to 6 hours with the mask on. It took me a lot longer to get to just four hours than it has taken you. Be patient with yourself. You will get there. I will get there.

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9/11/13 10:36 P

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Went to the sleep Doc today for my first follow up visit. Rather than taking my average from when I started to make compliance, they just averaged my time from the beginning. This average was 4 hours but I was hoping to get some kudos for getting where I am. That didn't happen...... They would like me to try to get more used to the mask when watching T.V. So I guess that I will need to take up watching T.V. lol I usually make dinner for the family after I get off work then do some teaching and tutoring to our home schooled son . with this said, I don't watch much T.V.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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ELLEN1159's Photo ELLEN1159 Posts: 317
9/11/13 4:29 P

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Tracy, when I use the word "compliance" I'm referring to what the insurance companies insist upon in order to pay for your therapy. I don't know how they arrived at four hours per night for 28 out of 30 days, but they do. I can't quite understand why it was so easy for my ex husband to mask up his first night home with the machine, but it has been so hard for me (then again, my pressures are really high) to get adjusted to this machine. Having anxiety and middle-aged hormone related sleep issues doesn't help either. I'm looking forward tothe day when I can fall asleep and stay asleep with the mask on for seven or eight hours. That will be heaven.

Jim, you're doing awesome!

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/11/13 9:32 A

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emoticon Today I put our flag out at half mast, I still remember where I was when I seen the second plane hit the towers. Gosh, twelve years ago already.

We have been getting our flu shots on Sept 11th so that when all of these drs ask me when I got mine, I can remember LOL...





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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/10/13 6:24 P

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Jimmy, Ellen & Tracy, My DH just brought me to the ER one time too many at 4:30 AM with an irregular heart beat and my blood pressure off of the wall. No one ever found out that it was sleep apnea. The neurologist did when I went for my sore cramping feet. I have been told by one dr too that the swelling of our feet is due to sleep apnea....

I will always wear my mask every night! I just hate putting it on of course, but know I have to wear it to save my llife..

Hi Cathy, I haven't seen you post here in a few days. I do hope all is well with you and Buddy.

It is 95 here at almost 5:30 PM. No one has been outside all day. The poor kids had school today too...





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9/10/13 11:12 A

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Kathleen, Ellen, Merri, Tracy - Thanks for the support and answers to my questions. I love it that I am able to get answers and advice in such a quick manner from people that are actually on CPAP therapy.

Last night I hit 5.3 hours. Removed the mask for my last hour in bed. I don't remember tossing and turning too much so I believe that I slept quite well. My machine has an info button that I can get three bits of info from Usage, Mask Leakage, and AHI. Last nights readings were 5.3 hours, a smiley face for Mask Leakage, and an AHI of 0.3. I'm thinking that this is showing me the success of this therapy. During my Sleep Study, my AHI was 111.7. Tomorrow I have my first follow-up with my Sleep Dr. since I started on the CPAP. I'm sure that the news will all be good since I am able to read the same results that he does.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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TRACYDUKA's Photo TRACYDUKA Posts: 951
9/10/13 10:22 A

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I guess I adjusted quickly. I thought compliance was 100% of the time, not at 4 hour markers. So I've been wearing my mask all night most every night since February. If I can't get back to sleep, I just stay up until I have to take a nap, and on goes the mask. It's still one heck of an adjustment, but no matter how much I HATE the mask and machine, I LOVE how I feel using it more.

Tricky Tracy


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ELLEN1159's Photo ELLEN1159 Posts: 317
9/10/13 9:56 A

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Jimmy, you are doing great! You are making progress and your actual sleep time on the mask will increase. My next goal is to not take the mask off right away after I hit my four hours of compliance, to see if I can fall back asleep in less than an hour.

I think I may have mentioned this before, but I read that as many as 50% of the people who are prescribed CPAP therapy abandon it because they can't adjust. You didn't, and your health will continue to improve and you will get more energy. Already, i can feel the difference just from having four hours of sleep therapy a night. I don't feel as sleepy during the day and I don't have headaches. I can't wait to have 7 or 8 hours of CPAP therapy per night.

My insurance pays for a new cushion every three months and a new mask every six. The DME (I have Lincare) calls me to ask if I need a new cushion or the little paper filters that go in the back of the machine (I change those monthly and just rinse out the foam filter).

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/9/13 11:00 P

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Jimmy, My ins lets me get three new cushions every three months. I have to pay $33 than.

Headgear and mask every six months which I don't get very often as it is very expensive for me and YES we do have some ins tho...

I wash my cushion every day and my headgear and hose once a week with Dawn soap and vinegar water...

I know in time it will get so much easier for you. I thought I would NEVER get it down pat for me,,,,but yup, after three and a half years, I am doing pretty good now and I know you will get it too....





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9/9/13 8:26 P

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Jimmy,

When I got my equipment, they gave me a list of when everything is to be replaced. Depending on the item it was either every 3 mos. or 6 mos. They will call me before then, my order will be automatically placed.

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9/9/13 11:23 A

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I realize that this most likely isn't the correct forum for these questions. I'm still such a newbie and I have never made it through a cycle yet. Only about 40 days on CPAP.

How long do your mask cushions last? How long do you use them?

Mask?

Headgear?

Yes I am fortunate to have insurance but I still need to budget for these expenses since the supplies aren't 100% covered.

Also I have had a couple of successes! I have made the 4 hour compliance for 20 out of 23 days use. (not counting the first couple of weeks that I was only using therapy for about 1 to 2 hours a nite). Last night I also set a new personal best. 6.7 hours! Maybe only 3 to four hours was actual sleeping, still, this is better than normal. I had to strap the mask down, for what I thought, very snug. This showed little to no leakage when I checked the results this morning.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMSIECAKES2's Photo GRAMSIECAKES2 Posts: 17,761
9/8/13 12:05 P

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Happy Grandparents day to all of my Sparkler friends.

I just shut my machine off or even at times let it go as I am just going to the bathroom anyway. It is when I actually shut the machine off that I get the message that the hose is bad. I do see my Cpap dr now on Oct 18th and will let him know that about the message I get...





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TRACYDUKA's Photo TRACYDUKA Posts: 951
9/8/13 10:52 A

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I slept from 11-4:30 when my boy woke me up after having a nightmare. He wanted me to read him a story so he could go back to sleep. After all that, I was wide awake. So, I'm hoping today that I can take a nap later on.

Tricky Tracy


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9/8/13 9:22 A

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Managed 5.5 hours with mask on, slept for over 5 hours, no large leaks and AHI 1.4. Hope I can start to stretch out that sleep time before I find a job!

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9/7/13 1:03 P

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Went to bed 15 mins earlier last night than the night before (want to train myself to be on a more work-friendly sleep schedule) and fell asleep before a half hour had elapsed. Woke up 5 hours later and mask straps were bothering my ears, couldn't fall right back asleep so took mask off and by 6 I'd fallen back asleep until 8:30. Feel pretty good today but when I checked my SD card, large leaks galore from about 3 to 4 am. My AHI was 3.0, no CA's once I fell asleep, and I feel somewhat better, but those big leaks disturb me. I think I need to tighten the straps before I drift off.

But it's better than things were a month ago, so I'll try to be grateful!

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9/7/13 10:14 A

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Tracy & Grams, when I have to get up I remove the mask & turn off the machine. Then I put my mask back on. I don't go walking around with the mask on.

I don't seem to have some of the problems that others have. I wonder if it's because I have the nasal pillows?

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