CPAP Therapy and the myAir App

I started using my new CPAP machine in late June 2019 and I just wanted to post an update on my progress.

When Aprea Healthcare told me that I wasn’t going to get a BiPAP machine, I was freaked out because I have been using a BiPAP machine since 2005 and I thought the CPAP, which is called CPAP because it’s continuous air, BiPap is for bidirectional air, I though the CPAP was going to make it harder to sleep, but this new CPAP is actually not that bad. I am able to inhale and exhale normally.

The mask they included with my new machine was the nasal mask that I was used to, but this new mask was a bit different. The old mask had the cushion and pillow, unlike the new ones that just have the pillow. Here is my old mask with the cushion and pillow on the left, and the new pillows with 3 different nose sizes on the right.

I never had a problem with the old cushion and pillow masks, I could breathe through both nostrils just fine throughout the ramp stage (when you first start for the night, your machine starts out with a low pressure and that pressure slowly builds up to the final pressure over time to allow you to get used to the air) and beyond. This new mask was just too restricting for me. I started with the medium, which was installed on the mask frame when I received my new machine, and decided to use the large one on the 2nd night, but I still had a problem getting air during the ramp stage. I called and set up an appointment to tell them I’m having trouble and they told me I could get a different mask before the first 30 days are up, so I went in and they suggested this new nasal pillow which goes into your nostrils, and that one seems to work better, but there are side effects, like me pulling on the hose while I sleep which causes the air to leak.

The guy at Aprea Healthcare suggested I use the medium nasal pillow, but it’s too small and when I wake up, my nostrils are in agony because both pillows have literally gone inside my nose lol. I switched to the large, and haven’t had any pain. It REALLY sucks waking up in pain.

So this is my update. I’m doing good with my new CPAP machine. I wanted to post something so people will know that if you have been using a BiPAP for a long time and the Sleep Apnea company that sends you a new machine refuses to give you a new BiPAP, but instead only wants to give you CPAP, don’t worry, it’s pretty much the same thing. You can breathe easier (that was my pun for the day lol) knowing it works for me, and I was adamant about getting a BiPAP. If you find that you have trouble with CPAP, tell them and they will work to get you a BiPAP. It was like pulling teeth to get this CPAP, so I’m not even going to try to get something else.

Oh and here’s the myAir app screenshot. I love this app because before I didn’t have any data, this new machine actually sends the data to this app and now I can see what happens when I sleep.

My Sleep Apnea

My 15 year old BiPAP Machine left vs my new CPAP machine right.

I have severe sleep apnea. In the early 2000’s I was visiting my aunt in Simi Valley and another aunt in Lancaster, both in California and both aunts told me that not only is my snoring loud, but they could hear me gasp for air in my sleep. In 2003 I was waking up in the middle of the night literally gasping for air. I couldn’t inhale any air at all, yet I was able to exhale what air I had left in my lungs with no problem. I thought I was going to die, and this happened every night. I went to my doctor and they gave me an inhaler and they ordered a sleep study and a year later I got my first machine which is the BiPAP machine in the image above on the left.

My original sleep study was great because I was taking Ambien at the time, so I was able to go to sleep immediately. They only had me there for a few hours, and during that time they gave me both tests. They had me sleep without the mask, for I’m guessing an hour, then they woke me up to put the mask on me connected to a BiPAP machine and conducted the test for another hour, then I was released. It did take a year for me to finally receive my BiPAP machine, but it wasn’t an issue getting it to me. The only time the company that sold the BiPAP to me contacted me was when they were trying to set up an appointment to bring it to my house and to show me how it works.

Last year in February I had a new sleep study so that I could get a new machine since mine was 14 years old at the time, and I had the hardest time getting to sleep. First of all, the insurance company won’t let me take sleeping pills anymore because they think I’m addicted to them. I have sleeping disorders and insomnia. If I can’t sleep, I need something to help me to sleep, otherwise I’m up until 4am staring at the ceiling.

So last year I was at the new sleep study and the room was a nice room that resembled a bedroom in an office with a nice bed that looked and felt brand new, but it was a strange bed and the room was hot and I just couldn’t sleep. I was awake for about 80% of the study. It’s difficult to sleep when you don’t have anything to help you sleep and you have all these wires on your head and body and you are told to sleep on your back in a strange environment in a strange bed in a hot room.

They had me come back a few months later for the second part of the sleep study which was the same exact thing, but the only difference was I had to sleep with the mask on from the same exact BiPAP machine that I was currently using. The same thing happened, I was awake for 80% of the night, but this time I had a mask on blowing air into my nose and I was awake for it. It’s so frustrating.

So I figured I had failed the sleep study both times and there was no way I was ever going to get a new machine. I was surprised when this year I received a phone call to tell me that I had been approved for a new machine. This was the most difficult machine to get because they kept calling me to tell me they were missing documents from my doctor’s office and that I would have to wait for it to be approved. Then one day they called me to tell me that I’m not going to get my machine at all because they have cancelled me because they didn’t get the documents. I called the doctor’s office every time they called me, and every single time the doctor’s office told me that they did in fact send every document that was requested, multiple times. It took 3 months of getting these phone calls telling me they were missing documents. Don’t call ME to tell me you don’t have documents, call the doctor’s office. I think that is so unprofessional of a company to do that to a patient. Don’t involve me in this, just work to get me my machine.

So finally I did get the machine and it is a much smaller machine, but this one is a CPAP machine instead of a BiPAP machine. What’s the difference? Well, a CPAP machine is Continuous Positive Airway Pressure and a BiPAP is Bilevel Positive Airway Pressure. I was told back in 2005 that the BiPAP stood for Bidirectional Positive Airway Pressure.

My first night with this new CPAP machine wasn’t good. I was awake half the night. I think I was just not used to this new mask and it was constantly leaking air. Well, that was my fault, I didn’t have it on tight enough. The second night I had it on much tighter, but I kept turning the machine off because I thought the mask was too small because I couldn’t breathe through my left nostril. It came with a guide that you place on your face to see which mask you need. It told me I need the small, but it was too small, I feel more comfortable with the large one.

This new machine is connected to an online company that tracks my sleep, and the purpose is so the insurance company can make sure I am using it. If I don’t use it, then they don’t want to pay for it. That’s literally what the company that sold the machine told me. They are also watching to make sure I’m using it. They said I need to use it at least 4 hours a night for 3 months or so, and if I follow this, then the insurance company will pay for the machine until it’s paid for, and then the machine is mine to keep. But if I don’t use it, they will know. Why wouldn’t I use it? I have sleep apnea lol.

I am so thankful to have this new machine, because I was so worried my old one was going to stop working and that I would eventually die from my sleep apnea. I would rather die in my sleep not knowing I’m dying rather than be in pain, but I’m not even 50 yet, I’m not ready to die. My mother died at age 42 of a heart attack in her sleep, and I know for a fact she snored really loud. I think she had sleep apnea, and just didn’t know. What a way to go though. Let me get wrinkles before I die though.

My Diet Update

2018-08-04
A couple of weeks ago I weighed 265lbs and that was enough of a wake up call for me to want to lose weight, but I couldn’t actually start thinking about losing weight because I didn’t have the money to buy diet food for myself. My life partner decided on his own without asking me to call NutriSystem and they told him that their plan would end up costing somewhere in the neighborhood of $350 a month. That includes breakfast, lunch, dinner and snacks throughout the day. That’s WAY too much money for me to be able to afford on disability. If I’m going to do this, I will do it the same way I did in 2013 when I lost 70lbs. When I had the money I bought some Weight Watchers Smart Ones frozen dinners that included breakfast, lunch and dinner and if I want a snack throughout the day I’ll eat a banana. I also started going to the gym again and I started using the Noom app and my Fitbit.

The day I actually started my diet was last week on Tuesday, July 31, 2018 and I actually weighed 255.4. Today is Monday, August 6, 2018 and I weighed 250.8. I decided to tell the Noom app that my goal is 170lbs, and they want me to lose 2lbs per week, so my estimated date to get down to 170lbs is May 13, 2019. But, I’ve already lost close to 5lbs this week, so every week when I weigh in, that date will get closer and closer.

I didn’t want to keep updating my blog about my weight loss because I didn’t want to be a bother about it, but when I lost 70lbs in 2013, I kept a page on my old website that I updated with pictures and screenshots, so I think I will create a page on this blog that I will update. I think that adding updates will keep me motivated. So I’m going to go do that right now.

I am having surgery (update)

So something has happened to me and I thought I would talk about it.

A few weeks ago I noticed a little marble sized hard growth on my back. At first I thought it might be an ingrown hair on my back, but I wasn’t sure if it was anything I needed to worry about. I didn’t go to the doctor because the clinic we go to was having issues finding a doctor that would stay long enough to allow me to check in with them.

I was going to call them, but they called us asking if we would come see their new doctor because they wanted to introduce her to some of the less neurotic clients lol. I’m occasionally on the neurotic side. but I’m usually very calm, so I was a safe bet.

So we went and she looked at it and said it was probably an ingrown hair, which hello, I nailed. She gave me a antibiotic and said when you are finished in 7 days, we will refer you to someone to have it lanced and drained. Well, 7 days pass and I call them to let them know it’s time. By the way, it grew from that little marble and now it’s twice as long as it was.

I went to this general surgeon and was expecting him to lance it and drain it in that visit, but he told me that it looks like I have Kaposi Sarcoma. I didn’t know what that meant at the time, but it sounded bad and I went from excited to have this thing gone to feeling sudden dread. He couldn’t lance it or drain it, instead he told me they would need to do surgery to remove it, which will be this week on Thursday.

The next day the new doctor at the clinic called and wanted to know what he told me and I told her he said it was Kaposi Sarcoma. She told me that he didn’t write anything in his report about that, just that it needed surgery to remove.

Kaposi Sarcoma causes purple blotches on your skin and is a very rare cancer usually only seen in AIDS patients. Well, I do have the AIDS virus. I was diagnosed with  HIV in 1991, and then 2 years later I was diagnosed with Pneumocystis pneumonia, which the doctors said was a symptom of AIDS. Gradually over the years from 1993 to 2000 my t-cells had dropped to 50 and I was essentially dying slowly. When we moved to Bakersfield, the HIV/AIDS specialist doctor at the clinic I currently still go to changed my medicine. I was still taking AZT in 2001 believe it or not. Anyway, they changed my medicine and my t-cells gradually raised and I’m still alive and today my t-cells are in the 900 range and my viral load has been undetectable for years.

I told you that because the new doctor at the clinic told me that a patient who has a viral load and t-cells in the 50 range would be more likely to get Kaposi Sarcoma than me, so it’s unlikely that I have this rare type of cancer. Plus my back doesn’t have any strange colors. There is bruising on the skin over the lump, but that’s to be expected considering my skin has stretched a tiny amount and that this lump has caused a bit of trauma to the cell structure of the skin where the hair is grown. That spot has a open cell where the hair grows. I know this because I tried squeezing what I thought was pus out, and some did come out, but it was too hard and it hurt too much to come out.

So there are still a few more days until surgery and I will update this post if it’s a small enough update, but if it’s a lot to talk about then I will start a new blog post. Otherwise, I will keep you posted on the progress when it’s all over.

Update: Today is Thursday 8/31/2017 and I had my surgery. The doctor looked at the area that needed to be removed and noticed that the bruising was gone, and told me that he thought it was kaposi sarcoma due to the fact that he saw the purple color of the skin, and he realizes now that it was a bruise from the growth which was injuring my skin and causing it to bruise. So now he knows it is not kaposi sarcoma. So that’s awesome that he doesn’t think I have cancer.

He did the surgery and I am in a lot of pain, as I should be considering I had surgery lol. He said he will send it to a lab and find out what it was and he will let me know next time I see him. In the meantime, I’m not allowed to lift any weight or exercise for 2 weeks and I can’t shower for 2 days, which will be extremely difficult for me since it’s so hot and when it’s this hot, I usually take up to 3 showers a day. I absolutely cannot stand being sticky, sweaty and stinky. Luckily the right guard lasts a long time. We have some surgery wipes that I can use to at least clean my body.

So when I find out what the issue is, I will edit this post again with another update.

Update: Wednesday 9/6/2017

My follow up appointment with the doctor revealed that it wasn’t an ingrown hair, it wasn’t Kaposi sarcoma, it was an infected sweat gland. Who knew? So that’s a relief that it’s not cancer.

How I Beat Insomnia

insomnia

Insomnia sucks. You lie in bed in a dark silent room with your eyes closed hoping to drift off to sleep, but all you can think about is new ways to beat the bad guys in your favorite video game, or how you would design your tiny house layout. Maybe you are thinking of something that someone said and it is bugging the heck out of you. Perhaps you are having flashbacks of a time when you were treated poorly by someone or a group of people. Or fill in the blanks.

That’s been my problem for several years. I remember a time when I could barely keep my eyes open after midnight when Ghost Hunters was doing a live ghost hunt on Halloween, but for the last few years, staying up past midnight was a non issue. In fact, I was lucky if I was going to bed by 5am. Insomnia has been awful for me for a very long time. I was taking Ambien for more than 10 years, then the insurance stopped paying for it, or any other sleeping pills for that matter. I’ve been buying over the counter sleeping pills. Your body becomes immune after taking so many sleeping pills. One of my doctors told me to take Benadryl, and I did, but that too stopped making me sleep. I thought about buying NyQuil, but that can get expensive.

So how did I beat insomnia? I bought a FitBit earlier this year, and it has an alarm on it that vibrates to wake you up. I decided to start using it, so I would set the alarm for 8am. The first couple of days I would wake up and 8am, but press the button and go back to sleep. Then I decided to get up at 8am, but by 10am I was sleepy again, so I would take a nap. I tried staying awake as long as I could, and try as I might I would still fall asleep after noon around 1pm or 2pm. I tried my best to stay awake, so when I would find myself drifting off to sleep, I would sit up and drink something cold and get up and walk around. Sometimes I would get in the shower because washing your body usually wakes you up.

It might have taken me 2 weeks to finally get to the point where even though the alarm is set for 8am, I wake up at 6am. Of course I try to go back to sleep and wake up at 8, but there are days where I’m so awake that I just can’t possibly go back to sleep, so I just get up. Now when I’m watching my shows at night, I’ll start drifting off to sleep at like 9 or 10pm and I’m asleep all night until 6 or 8am. No more sleeping pills.

We have a new doctor who is Hindu and he told me I could try meditation and I have tried meditation in the past, but I’ve gotten to the point where it just puts me to sleep. I mean like during the day. I think trying to meditate at night when you are trying to fall asleep is a great idea, but I don’t need to meditate to fall asleep anymore since my body has gotten used to calling it a day by 9pm. So I don’t need medication, nor do I need meditation to sleep.

It’s a wonderful feeling when you are able to fall asleep at a decent hour, despite the fact that I don’t have a job to go to in the morning.

Schwinn Meridian 3-Wheel Tricycle

trike with 4 locks

I wanted to ride my new Schwinn Meridian 3-wheel tricycle to the store. I bought it a month ago and it’s been sitting in our back yard ever since. I haven’t been allowed to ride it because my partner is afraid I will hurt my leg, or perhaps get into another accident and break something else. I insisted on going to the store on the trike because I wanted to buy him a anniversary gift, and I really wanted to ride it. It’s like giving a child a cookie, but saying you can’t eat it, although in this case, I bought it and I’m being told I can’t ride it. He isn’t wrong for worrying because I’ve broken 2 bones so far on my bike.

The new Schwinn Meridian 3-wheel tricycle is very difficult to ride at first. I was on the right side of the street and I was quickly heading towards the sidewalk. I thought I was going straight, and in fact I held the handlebars like I was going straight, but for some reason I was actually going to the right. I had to quickly hit the brakes before I hit the sidewalk and the back of a car. That thing stops on a dime. I mean, literally, I squeezed the handlebars and it stopped so fast that I nearly fell off. I did actually, but I landed on both feet, thank goodness. I discovered that I have to veer to the left to go straight, which makes me think the handlebars aren’t on right, but they are. I even triple checked, and they are on straight.

I think that it will take time to learn the quirks of that bike so I will be comfortable enough to ride it when I need/want to. I reassured my partner that I won’t be riding that bike as fast as I normally would ride my old bike. I said I wouldn’t be racing, and he said YOU’VE BEEN RACING? I laughed and said no, I mean I won’t be going 10-12mph, instead I’ll go slow like 7 or 8 mph like an old man. When I cross streets I will walk it instead of riding it, which you are supposed to do anyway. I’ll also only ride it in residential neighborhoods instead of busy streets. Even streets with a bike lane have cars parked in them, so I end up with a very tiny amount of road. I prefer neighborhoods anyway.

I won’t be going to the gym until April 15th, so I still have a few weeks to heal, even though the doctor told me I was completely healed. I really look forward to going to the gym, even though I’m terrified to go on any bike now. I guess if I fear breaking another bone in my body, then I will be even more careful than I normally am, and so I shouldn’t worry about it. My commitment to Planet Fitness ends in September, that is if they didn’t add those months that I had my account frozen, if that’s the case then probably December. I really hope I make a big difference and lose a lot of weight by then.

Did you notice the picture above? I took a picture of it after I put all the locks on it when I got to the store. There is the U shaped lock that attaches to the handicapped sign with the steel coil attached to the front wheel. Then of course a coil cable attached from the seat to the frame, that way I don’t have to worry about someone stealing my seat. Trust me, it’s an issue lol. Then 2 more coiled cables attached to each back wheel. You think it’s paranoia, but if you think that, you’ve never come back to your bike minus a wheel or the seat. It happens more than you think. Trust me, it’s happened to me.

Fitbit Sleep

fitbit sleepI was diagnosed with Sleep Apnea in 2005. I visited 2 different aunts from 2002 to 2004 and they both told me that I snored really loud and that I gasped for air. In the summer of 2005 I was waking up in the middle of the night really gasping for air, I mean like I was struggling to breathe like someone had their hands around my neck and was choking me to death. I went to a sleep study and they told me I had severe sleep apnea and prescribed a BiPap machine.

I wore the BiPap machine mask every night for a decade, until I lost 70lbs and the pressure was too much and I couldn’t use it anymore. I didn’t think I had any sleeping issues with it, but I was wrong. I think I just didn’t want to continue to use it because I was sick and tired of having to be tethered to a machine for the rest of my life. Can you imagine not being able to go to bed unless you have a ball and chain locked to your ankle? That’s what it feels like. But in all fairness, if I don’t have that ball and chain locked on my face (in this case) I could likely die.

My mother died in her sleep from a heart attack and she was obese and I remember how bad her snoring was when she was alive. The doctor at the sleep study told me that I could die from a stroke or a heart attack in my sleep if I don’t have a BiPap macine. I believe that if I never went to that sleep study, I wouldn’t be here right now blogging about this.

I just bought a Fitbit Charge HR from Amazon to help motivate me to exercise more often so I can lose weight, and I knew it tracked my sleep, but I wasn’t as motivated by that until this very moment. When I saw my sleep from yesterday, I wasn’t that shocked by my sleeping patterns. It says that it took me 8 minutes to fall asleep, I woke up 6 times, I was restless 7 times and I was awake/restless for 30 minutes and I was only asleep for 6 hours and 6 minutes. The reason is because I set the alarm to wake me up at 8am. I want to wake up earlier than I do because I am trying to change my sleeping habits. I really hate sleeping so late. But then I went back to sleep because my body really needed it. I only slept for 1 hour and 48 minutes, but I was awake 4 times, I was restless 4 times and I was awake/restless for 27 minutes, which is basically half the time I was asleep.

Last night I decided to do an experiment and use my BiPap machine. I have gained half of the weight back that I lost, so I’m getting back into that zone where I really should start using the machine again. The air pressure wasn’t too high, it was the way it was when I was first diagnosed with sleep apnea, so that right there tells me I really need to be wearing my mask again every night. So last night I slept for 9 hours and 13 minutes which tells me I am catching up on much needed sleep. I only woke up 1 time, I was only restless 4 times and I was awake/restless for 8 minutes the whole night. What a huge difference a BiPap machine makes.

This Fitbit watch has really made a difference in my life in just owning it for 2 days. Not only will it help me (hopefully) lose weight, but it helped me to realize that I need to get more sleep and I need to use my BiPap machine every night, which I am going to do.