To Breathe or Not To Breathe

For those of you who may be on the fence about using a CPAP machine for sleep apnea, I, too struggled for an exceptionally long time knowing I needed to use my machine. It's not an easy task and I attempted it several times with no success because I looked at it as being intrusive instead of being helpful and necessary.

I was originally diagnosed with sleep apnea about 2002, but I never made myself use the CPAP I got. At that time, my insurance company didn't consider the humidifier part of the device as being necessary. Try using a CPAP without it. I would wake up after just a few hours and my nasal passage and throat felt like it was on fire. I discussed this with my doctor and the only suggestion she had was for me to coat the inside of my nose with KY jelly each night. I know it sounds gross, but I tried what the doctor suggested. I had the same reaction plus I had dried KY jelly flakes all over the inside of my nose which made me look like I had some dreadful disease. It was a wonderful picture and a joy to try to clean out each morning before work! Shortly thereafter I finally gave up trying to use the machine until about 2012 when my health was going downhill fast. My diabetes had gotten totally out of control. I was tired all the time throughout the day, I wasn't sleeping well at night and I was having trouble concentrating during the day. It was as if I was living in a fog all the time.

When I did sleep throughout the night, I would wake up struggling to breathe. Then in 2012, I received a new CPAP machine which I knew I needed to use. No more lame excuses! My latest sleep study revealed I stopped breathing 55.9 times per hour with apnea-related episodes. Wow! That meant I stopped breathing almost once every minute. That number kept resonating in my head repeatedly. My lowest oxygen level was 73%. Normal levels should be 95-100%.  Anything below 90% is considered being in respiratory distress. My doctor was amazed that I hadn't had a heart attack or a stroke in my sleep. He also was amazed that I could function during the day after having been deprived of oxygen all night long night after night. Is "functioning" what this is called? If he only knew how much I was struggling just to put one foot in front of the other!

When I received my new CPAP machine, I used the machine that night and every night since then...NO MORE EXCUSES! Those stats scared me enough to make me realize that I was asking for trouble and it wasn't the kind of trouble I wanted. Yes, this CPAP is equipped with a humidifier so it works without making my nasal passages feel like they're on fire.  I selected a mask that felt comfortable to me to wear.  I knew that was important. This machine isn't loud so it doesn't sound like a jack hammer next to my head. When I put the mask on that first night I actually told myself OUT LOUD that I was going to wear the mask ALL night long and that I wasn't going to take it off unless I has to get up to use the bathroom. When I woke up the next morning, my mask was still on and I felt like I had accomplished an amazing feat. It wasn't long before I noticed I started feeling better.  I had more energy and I wasn't tired all the time. From there on out whenever I would lay down whether it was to take a nap during the day or to watch television in the evening in my bedroom, I would put my CPAP on just in case I would fall asleep.

The moral of this story is if you're diagnosed with sleep apnea, take it seriously. Do whatever you need to do to make yourself get used to using your machine. And most important, be compliant and use your machine faithfully.  Sleep apnea does kill people. Don't be stupid and be one of those people who turn into a statistic.

Yes, I have a dog that does this to me. It's such a wonderful way to wake up from a sound sleep! She usually sleeps in her dog bed, but when she's gassy she likes to sleep on the floor right next to my night stand and well, if you've ever had the pleasure of smelling a dog fart, then you can only imagine what one funneled directly into your nose while you're sound asleep would be like. I jump up using some really bad language and Libby heads upstairs quickly and then turns around at the top of the stairs and looks at me like as if to say, "you need to chill out, lady! It's only a little gas!"

THE BEAST WITHIN ME

As this year winds down, it's time for me to reflect on the things that affect my life the most.  In the past several years, my health issues have worsened, but I think I've finally gotten to the point of being so sick and tired of being sick and tired that it's time for me to dig down deep and grab whatever stamina I have left and try to save this slowly sinking ship.  2014 has got to be a year of change! Great things have got to happen!

Here's a list of my current health problems:

1. Insulin dependent Type ll Diabetes - uncontrolled, of course!  No doctor in the past 11 years

since I was diagnosed has been able to get my A1C in a normal range.  Trust me, EVERYTHING has been tried and it remains a mystery as to why my diabetes is so tenacious.  I wonder if it might have a genetic factor to it since my paternal grandmother had the same type of tenacity with treating her diabetes.  As an added bonus of my uncontrolled diabetes I developed diabetic neuropathy in my feet.  The burning sensation and stabbing pain is so bad at times it makes me want to cry.  Standing on my feet during these bouts is challenging and very painful.  Recently, I was put on Lyrica and that initially helped with easing the neuropathic pain in my feet and also with the "all over" pain I experience from fibromyalgia I was diagnosed as having about a decade ago.  My other diabetic related health problem is gastroparesis. Gastroparesis is another fun diabetic complication!  Food sits undigested in my stomach for long periods of time due to damaged nerves in my stomach.  It's hard to describe how good food tastes when it goes down and how putrid it is after sitting in my stomach for a day or so.  This condition causes pain in my upper gastric tract.  Needless to say, I eat A LOT of cottage cheese and applesauce which is easy to digest.  I do feel thankful that I haven't developed anything more serious as a result of my uncontrolled diabetes and hope my upcoming endocrinologist appointment will be a start to finding a solution to these problems. 

 

2. Pain - I'm lumping all my various spinal related issues into one large category called "PAIN".   In 2003, I had 2 disks in my neck fused.  At that time, I was told I had the neck of a 94 year old woman and was told I had several things going on with my back and neck.  After that surgery, I swore I'd never have another surgery because the recovery was so difficult.  "Never" lasted 9 years.  By the time I had my second neck surgery, I couldn't raise my head to eye level without it causing my arms to go completely numb.  It was next to impossible to function without the use of my arms and I knew the longer I put off surgery the more permanent the nerve damage was going to be, so it was back to the neurosurgeon to have 2 more disks fused.  From September 2012 to June 2013, a nine month period I had 3 back surgeries.  My neurosurgeon claims there isn't anything else he can do for me, so basically, I'm supposed to just grin and bear it but grinning and bearing it consists of days where I can barely walk or stand up straight due to the intense pain.  I have severe headaches from the muscles in my neck and back tightening and causing horrific muscle spasms, nausea and blurred vision.  I know I need to go get a second opinion, but I'm really afraid to do that.  I keep asking myself what I'm afraid of and I don't know if it's that someone will agree that there's nothing else that can be done for me or if someone will say I need more surgery.  Of course, I see a pain management specialist, but all that means is getting combos of potent narcotics to take.  I so hate doing that, but am forced to take the pain meds when I can't function any other way.  In 2009, I went off ALL my pain meds cold turkey because I wasn't getting the relief from them I should have been getting.  It was insane to keep filling my body with meds that were doing more harm than good.  Withdrawal took about a month of pure hell. Now 4 years later, I'm right back there again and the doctor wants to try me on what I call the "Dear Jesus" patch (Duragesic)  or Methadone because everything else I take or have taken just doesn't work.   I'm not sure how I feel about taking this next step.  I'll mull it over in the next couple of weeks before my next appointment with him and make some sort of decision. 

3.  Autoimmune hepatitis - The 3 most common autoimmune diseases are lupus, rheumatoid arthritis and Crohn's disease.  Apparently my body has decided it doesn't like my liver anymore.  Isn't that special?  Too bad it didn't decide to dislike the fat on my stomach and hips instead!  After having a complete work up (CT of the abdomen, abdominal ultrasound, labwork, etc.) followed by a liver biopsy, my doctor thought it was best that I go to Oschner's Clinic in New Orleans.  It's the closest transplant facility to where I live.  He felt it was a good idea for me to get in their system in case at some future date I need their services.  The following is a short rundown on what an autoimmune disease is if you're not familiar with it.

Our bodies have an immune system, which is a complex network of special cells and organs that defends the body from germs and other foreign invaders. At the core of the immune system is the ability to tell the difference between self and nonself: what's you and what's foreign. A flaw can make the body unable to tell the difference between self and nonself. When this happens, the body makes autoantibodies that attack normal cells by mistake. At the same time special cells called regulatory T cells fail to do their job of keeping the immune system in line. The result is a misguided attack on your own body. This causes the damage we know as autoimmune disease. The body parts that are affected depend on the type of autoimmune disease.

4. Sleep apnea -  Controlled with the use of a CPAP machine. This one I got scared into doing because my O2 stats had dropped to 73% while sleeping (anything under 90% is considered respiratory distress) and I had stopped breathing over 150 times per hour determined by a sleep study, but the good news was that I had also started breathing again over 150 times.  When the doctor reviewed the results of my sleep study, he was amazed that I hadn't had a stroke or a heart attack in my sleep.  That night I started using my CPAP machine and have used it every night since then.  I am a believer!

5. All the other "lesser" stuff - high blood pressure (controlled by meds), high cholesterol (controlled by meds), Vitamin D deficiency (in the process of being controlled by meds), GERD (controlled by meds), chronic insomnia (uncontrolled, but I do take Trazodone and it works sometimes), adult onset asthma (controlled by meds PRN)  I'm sure I've missed something, but quite frankly, my dear...I don't give a damn right now!  I'm off to take a nap because all of a sudden I desperately need one.

Update 2/19/14: I've been on 2 more rounds of 3 months of Vitamin D therapy but my lab values refuse to improve.  I have an appointment with an endocrinologist to address that and my diabetes.  I think I'm falling apart!

6. Depression and anxiety - This is something I've been in denial about for such a long time, but it's the silent, dark horse I ride.  I isolate myself so I don't have to be around people because I don't want them to see me suffer, but isolating myself is the worse thing I can do.  I know depression makes all ailments feel worse, but to treat it means taking more drugs and many of those drugs cause weigh gain and any weight gain makes my diabetes worse.  It's a vicious circle that seems to have no jumping off point.  I no longer know how to help myself.  At this point I don't know if there is any real help.

MEDICATION TIME

Sleep finally came sometime after 3am. I drifted off while watching the shows I had recorded on my DVR. I don't remember dreaming, but that isn't unusual for someone with sleep apnea. The place where dreams live somewhere deep in R.E.M., is a place that prohibits apneatic individuals from entering.

When I sleep, I sleep in dreamless slumber. I awake feeling as if someone had been scratching around inside my head. Today, I awoke shortly after 6am feeling sick; almost as if I had a hangover without the benefit of being drunk. After sitting on the edge of the couch for several minutes contemplating if my legs were actually strong enough to support me, I stood slowly and staggered to the kitchen for a drink of water. What desert had I trudged across in my few hours of sleep to cause this excessive thirst? Who had I battled to feel this sore?

Gratitude statement: I was going to write TGIF, but I haven't worked since December 2008, so Friday is Sunday is Wednesday to me. How about this...I hear birds singing again this morning and for those melodious creatures I am thankful. They sing and fly and remind me how much more beautiful they are than mankind.