First there was this ...
(Disclaimer: This is not me.)
(Disclaimer: This is not me.)
Then there was this at Dr. Sleep's office ....
(Disclaimer: Also not me. I have a much fuller beard and broader chest.)
Two sleep studies later, I was prescribed this hot bedtime accessory to spice up the love life ...
(Again, not me, but closer. I asked for blue bands to match my La Perla and slipper heels with marabou puffs.)
And now, after two days of nighttime ventilator mask treatment, I look a little like this ....(Beside the issue of the facial sores, I am also way overdue for a manicure and tooth cleaning.)
If there is one thing I have learned in my health odyssey, it is that when one part breaks, it usually causes a trickle down reaction to other parts. Dealing with one errant body issue can cause about ten other problems that you never imagined.
To wit, I currently have an oozing bedsore the size of a quarter on the bridge of my nose. I refuse to post a picture (see Freddy Kreuger, above, for reference re: complexion attractiveness and general mood). Besides being undeniably sexy, it hurts. I am sipping from a cup of coffee as I write and each time I raise the cup to my lips, I flinch and involuntarily mutter, "Ouch." Alright, actually, I mutter, "Ouch ... M-----er F----er! What the s--t is this s--t !" but Ethan and Jeff just returned from the store so I've downgraded the mouth on account of tender ears. Meaning, of course, Jeff's.
You may be curious how I ended up with a bedsore on my face. You may wonder how you might go about obtaining one of your own. Well, I will tell you. First, make sure your brain is broken. Then, have a sleep study. Then another. Then find out you have central sleep apnea; to be clear, this is different from the relatively common affliction of obstructive sleep apnea. That is the old man who snores kind, often related to allergies or obesity. Central sleep apnea is the WOW! your brain is so messed up it does not even know when to BREATHE! kind, caused by brain or systemic body illness.
To wit, I currently have an oozing bedsore the size of a quarter on the bridge of my nose. I refuse to post a picture (see Freddy Kreuger, above, for reference re: complexion attractiveness and general mood). Besides being undeniably sexy, it hurts. I am sipping from a cup of coffee as I write and each time I raise the cup to my lips, I flinch and involuntarily mutter, "Ouch." Alright, actually, I mutter, "Ouch ... M-----er F----er! What the s--t is this s--t !" but Ethan and Jeff just returned from the store so I've downgraded the mouth on account of tender ears. Meaning, of course, Jeff's.
You may be curious how I ended up with a bedsore on my face. You may wonder how you might go about obtaining one of your own. Well, I will tell you. First, make sure your brain is broken. Then, have a sleep study. Then another. Then find out you have central sleep apnea; to be clear, this is different from the relatively common affliction of obstructive sleep apnea. That is the old man who snores kind, often related to allergies or obesity. Central sleep apnea is the WOW! your brain is so messed up it does not even know when to BREATHE! kind, caused by brain or systemic body illness.
Dr. Sleep was so excited because he had never seen a central apnea in someone "my age and relative health (i.e., conscious, talking clearly and not in the ICU). It is so rare!" You are welcome, Dr., I aim to please.
For those medically inclined:
Web MD: What is central sleep apnea?
In central sleep apnea, breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with serious illness, especially an illness in which the lower brain stem -- which controls breathing -- is affected.
Conditions that may be associated with central sleep apnea include the following: neurological diseases, such as Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis (Lou Gehrig's disease) damage to the brain stem caused by tumor, encephalitis, stroke, injury, or other factors, such as congestive heart failure.
So the bottom line is my body is too dumb to breathe at night and needs to be told when to do so. I was prescribed a machine to sleep with at home, that lovely contraption above. It hooks up to an air-flow ventilator and supplies constant pressure to the upper airway. The goal of this treatment is to boost the weak breathing pattern. The bi-level PAP device is set to automatically deliver a breath if the device detects I haven't taken a breath after a certain number of seconds.
As you might imagine, it is not at all claustrophobic or unsettling to recess to sleep with a gas mask-like contraption the size and noise level of a Volvo on my face. I have "slept", maybe, three hours in two nights during this adjustment period. However, there was not much choice in the matter; I was told wearing this thing was not optional, if "I wanted to live." I left Dr. Sleep's office with the added endorsement that many patients "develop open sores on the pressure points on the face." Something to look forward to.
And there you have it. Day Two of Sleep Mask and I now look and feel like an escapee from the leper colony.
For those medically inclined:
Web MD: What is central sleep apnea?
In central sleep apnea, breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with serious illness, especially an illness in which the lower brain stem -- which controls breathing -- is affected.
Conditions that may be associated with central sleep apnea include the following: neurological diseases, such as Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis (Lou Gehrig's disease) damage to the brain stem caused by tumor, encephalitis, stroke, injury, or other factors, such as congestive heart failure.
So the bottom line is my body is too dumb to breathe at night and needs to be told when to do so. I was prescribed a machine to sleep with at home, that lovely contraption above. It hooks up to an air-flow ventilator and supplies constant pressure to the upper airway. The goal of this treatment is to boost the weak breathing pattern. The bi-level PAP device is set to automatically deliver a breath if the device detects I haven't taken a breath after a certain number of seconds.
As you might imagine, it is not at all claustrophobic or unsettling to recess to sleep with a gas mask-like contraption the size and noise level of a Volvo on my face. I have "slept", maybe, three hours in two nights during this adjustment period. However, there was not much choice in the matter; I was told wearing this thing was not optional, if "I wanted to live." I left Dr. Sleep's office with the added endorsement that many patients "develop open sores on the pressure points on the face." Something to look forward to.
And there you have it. Day Two of Sleep Mask and I now look and feel like an escapee from the leper colony.
9 comments:
JENNY! I just want to come up there RIGHT NOW and give you a big hug!!! I hate all this for you. Hate it, hate it, hate it!
And yeah, isn't it SO reassuring when you hear your doctor say, "I can't believe it. Never seen this...Like getting struck by lightning twice."
Seriously, doctor? Are you insinuating I go play the lottery with my obvious beat the odds strategies????
Girl...I love you and am thinking about you every day. Seriously. I am sure you will have someone go to Hopkins with you, but if you DON'T and would like to, SIGN ME UP!
And...for the record, I will now stop complaining about the mouth guard with fangs for my TMJ. You TOTALLY win.
Sending you a hug. I hope things improve for you.
Did I ever tell you about the time that both JD and I were given mouth guards to sleep in by the dentist? Huh, yes well, J's was small and sleek and mine looked like the mouth guards that football players use - all that was missing is the black stripes under my eyes. The dentist said to me - I hope you're done having kids, when he gave me my guard. He KNEW it would ruin the bedroom for me. Gah. And a few months later we had R. I just *had* to prove him wrong. (And I am hoping this story makes you laugh).
I am sorry you have to wear that crazy device, but I am in the camp that anything that helps you (because last I checked breathing,is an important part of living) I am in favor of, but I don't like the sores part. Is the mask too tight? Can it be loosened a bit? Is there a cream or can you put something like a soft piece of material under it to help? That's all I got, besides mad, hugs for you. Stay strong my friend.
Aww, honey. =( My FIL and BIL both have these, and I promise you will eventually get some sleep. And who knows, maybe you will feel better during the day once you get adjusted. I suggest some sort of scar treatment like Mederma once they heal over, if they leave red spots. It really works.
Yikes that sounds awful. I can't imagine a struggle like that. I am grumpy enough running on no rest, but I know the little ones will grow old soon enough and I'll rediscover REM sleep.
I hope things improve for you soon.
Sounds like you are going through a really tough time and I admire your positive attitude about it! I feel like Freddie today as well, because my one daughter have been waking us up every 2 hours last night, AGAIN!!
I solved sleep apnea without medical treatments - personal experience
At first I didn't know what sleep apnea was nor that I have it.For several months I didn’t even realize I had sleep apnea. In this period I felt tired, I had no energy and I was sleepy all the time. I didn’t understand why I was tired and sleepy because I was spending more than 10 hours in bed.
oh, I can honestly tell you when I got the news I needed a c-pap machine to breathe at night I asked the doctors if he could infact just surgically place a pipe in my throat to keep it open instead of the air, but after a year of using it a doctor asked me to try stop using it and I can't sleep without it now.
the key is getting a mask that works for you, I didn't think I would, but I really like the nose pilow things and because I open my mouth at night I got the one with the nose thingy (not that covers the nose cause I like to scratch my nose at night and I don't like the bed sores) and a part that goes over my mouth...anyhow, I still fiddler with it, but since my O2 levels use to drop below 85 when I would go to sleep I so prefer not waking up feeling like I couldn't breathe all night--does that even make sense?
oh, I can honestly tell you when I got the news I needed a c-pap machine to breathe at night I asked the doctors if he could infact just surgically place a pipe in my throat to keep it open instead of the air, but after a year of using it a doctor asked me to try stop using it and I can't sleep without it now.
the key is getting a mask that works for you, I didn't think I would, but I really like the nose pilow things and because I open my mouth at night I got the one with the nose thingy (not that covers the nose cause I like to scratch my nose at night and I don't like the bed sores) and a part that goes over my mouth...anyhow, I still fiddler with it, but since my O2 levels use to drop below 85 when I would go to sleep I so prefer not waking up feeling like I couldn't breathe all night--does that even make sense?
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