Just Breathe Normally..

Hmmm.

A few years back, my husband was urged to have a Sleep Study. The physician wanted to see if my husband might have Sleep Apnea. What is Sleep Apnea I asked? According to the NIH, Sleep Apnea is defined as:

Sleep apnea (AP-ne-ah) is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep Apnea usually a chronic (ongoing) condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of sleep and into light sleep. As a result, the quality of your sleep is poor, which makes you tired during the day. Sleep Apnea is a leading cause of excessive daytime sleepiness.

I don’t know, is it just me? It seems like everyone I talk to these days has this diagnosis or is about to. Of course with my husband’s Afib heart condition, I was in full agreement that he should follow through. He did so & was diagnosed with Obstructive Sleep Apnea. He was fitted for a CPAP mask, that Bless His Heart…looked like a cross between Snufflelupagus and Hannibal Lecter from Silence of the Lambs.

Snufflelupagus     Hannibal b & w

It was quite a large production to fill the water into the machine and then put the entire contraption on. If we didn’t get our goodnight kiss in before the routine, well..we missed our chance. And by the way, we need to have all talking completed before the mask is put on, as he is unable to speak or hear once he’s strapped into his mask. Clearly, this is not a process that anyone wants to repeat more than once a night..and for many, not even then. And if you have a bladder matter that requires frequent trips to the potty..it could still be a long night.

Did It Work?

Well, the answer is..I think it works..if one can tolerate the mask. By design, the mask is so tight with pressure, that no air could possibly escape or sneak in (unless intended to.) I could see an improvement in my husband’s sleep, but admittedly feel sorry for him in having to wear this funny-looking contraption each night. I feel even worse for him each time that he removes the mask to reveal a pale, colorless suction-cup shaped, impression around his mouth. It reminds me of when our daughter was young (and like all kids) went through a period of licking her mouth until she developed what I call “clown mouth”.

To be honest, I have thought to myself and even whispered to a few friends, I feel sorry for him…I KNOW I could never wear a mask like that. And to be clear..what Sjoggie could? We are already dry enough without assisting ourselves into choking mode, right!

Sjodry-sleep-study

On several occasions, my husband has pointed out to me that he is sure that I likely have Sleep Apnea because of the way I wake up with sudden loud gasps for breath. And with my ridiculous fatigue level, he could be right. In fact, at my Pulmonologist appointment last week, my doc suggested that I have a sleep study. I explained to him, that while I think it is a good bet that SjoDry does indeed have Sleep Apnea..I have avoided pursuing it, because I don’t need any assistance in worsening my dry mouth at night, and that is my biggest concern.

Here’s the rub..if I am going to go in to see my doctor and complain about my lava-resembling fatigue, then I can’t poo poo the suggestion to have a sleep study to see if this could be a contributing factor to my lack of sleep each night, and my all-encompassing fatigue each day. What is it that they say? You can’t have it both ways. So my appt. with the “sleep doctor” is on the calendar.

Even my Mom is going through the same process and in search of the perfect, or should I say, tolerable CPAP or Bi-PAP mask. While part of me feels like Sleep Apnea is the new “designer” disease created for the purpose of selling expensive face masks, the researcher part of me..says that the medical explanations, diagrams, videos and possible serious consequences of ignoring Sleep Apnea, do make sense. In fact, I had never really thought about Sleep Apnea as a very serious problem (at least in comparison to the rest of my medical issues.)

The Good News

The good news is that I have been researching the huge variety of face masks available. Of course, one’s individual Sleep Study results vary in terms of which mask may be most appropriate for them, but there are what appear to be tolerable masks with warm humidifiers in the same unit. Many Sjoggies, myself included, require the use of a humidifier each night anyway.

After asking the question about Sleep Apnea masks on the Sjogren’s World Forum, and talking to other Sjoggies I know, I am feeling less anxious about my possible/probable need for one.

The Bad News

The bad news is that they say that when you have been married a long time, you start to look alike. But matching CPAP masks is not what I envisioned.

his and hers

Here’s to fresh oxygen..All Night Long!

cpap_user_2_inch_round_magnet-r02e138b77515410fae6f53576038c95f_x7js9_8byvr_324

 

 

 

 

May the Oxygen be with us!

SjoDry

 

 

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in HUMOR, Random, Searching for Answers, Symptoms and tagged , . Bookmark the permalink.

4 Responses to Just Breathe Normally..

  1. Lisa Long says:

    Good article about sleep apnea, Sandy! If the CPAP machines don’t work for one reason or another, there are other options in dental appliances that fit inside your mouth, immobilize your jaw, and are not connected by hoses to any machine. Some people qualify for insurance to cover the cost simply because they make too many bathroom trips and it’s too cumbersome to remove & replace the face mask so many times. And they even make one that’s good for Sjoggies that allows the mouth to open a little bit so liquids can be consumed without removing the device.

    I want to say that I hope your night at the sleep clinic will be infinitely more enjoyable than mine was. My experience earned a prominent spot on my short list of “Horrible, Memorable Nights” It included things like very dry, cold air blasting from a ceiling vent above me and a documented total of 40 minutes sleep the entire night. This air circulation system was very noisy, but after a couple of dry, sleepless hours someone finally figured out how to turn it off. Unfortunately this made me even more aware of the man in the next room watching Westerns with the TV set at an alarmingly high volume. When I asked if the technician might gently ask him to turn it down, she just said that he was not a cooperative person. At about 3 a.m. after zero sleep, a technician offered me ear plugs (where was she for the past 4 hours?). The terrible dry air prompted me to drink more water, which necessitated many trips to the bathroom and, well you get the idea…

    So here’s my advice for anyone with Sjogren’s who is having a sleep apnea test in a facility:

    1. Ask beforehand if some type of air humidifier is available, or take your own;
    2. Take your own ear plugs;
    3. Take a mask to block the light in the room.

    Hope your test goes smoothly!

    • Thanks Lisa. I am so encouraged that there are masks that can cater to the Sjogren’s crowd. Between you & Becky, I will be armed for the night of the test and already have ideas or questions about various mask options.

      See you soon.
      Sandy

  2. BECKY MCDOWELL says:

    I was diagnosed with Obstructive Sleep Apnea less than a year after my diagnosis of Sjogren’s. I’ve been using a CPAP for 20 years now, and there is life after CPAP! The CPAP machines have improved considerably over the years (in fact, I was at the CPAP supplier today and they had one on display that was no bigger than a clock radio & it included a moisturizer).

    I’ve always used the heated humidifier and mask with nasal pillows which are much more comfortable than hard plastic masks. They keep making the masks smaller & lighter too, in fact I picked up a new one today like this (http://www.resmed.com/us/en/consumer/products/masks/airfit-p10-for-her.html). My CPAP (http://www.resmed.com/int/products/s9_series/s9-series.html?nc=dealers) automatically adjusts the humidity based on the current humidity level in my home (more humidity on a hot, dry summer day and less on a rainy, winter night for example). Of course, if you need a CPAP, the machine you would receive will depend on your unique diagnosis and which device the insurance will pay for.

    Lisa’s tips for the sleep study are right on. If you have Raynaud’s or get cold easily, make sure you ask for plenty of warm blankets as they seem to want to give you thin ones. If you ordinarily use eye ointment, nasal gel, and lip balm, bring them too as they will help you feel more comfortable.

    • Oh Becky..thank you. I really appreciate these helpful comments. I am assuming that these sleep study centers discourage any use of sleep aids by mouth?! I have such a difficult time sleeping at night, that I often require help by way of Rx or Tylenol P.M. And a lot of my sleep issues surround my pain. Thanks also, for sharing the device links. I love being armed with knowledge and choices.

      I will update on how it all ends up.
      Take Care.
      SjoDry

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