Another Day, Another Diagnosis

I have often said that Sjogren’s Syndrome is the gift that keeps on giving. I don’t know about you, but I’ve noticed that I have fallen into this..“because of Sjogren’s” rationale for everything physical or medical that happens to me.

Either wrongly or rightly, I have found that Sjogren’s gets the blame. Of course I have another significant diagnosis of CVID (Common Variable Immune Deficiency) that has been with me far longer than Sjogren’s has. As I grew up, it never occurred to me to research any of my medical issues.

I just dealt with them (or more accurately..my Mom dealt and paid for them). Being ill has been my normal for my whole life. I suppose that’s why I have a sense of humor about my never-ending, “kill me now”, “she’s always sick” saga.

Like I Need Another Problem (Said With Snarling Irritation)

So here it is folks..Obstructive Sleep Apnea. I know, I just wrote about this a blog post or two ago. It’s just been confirmed at this point. When the doc suggested a home sleep test, I was thrilled. This is easy. Do the test in the comfort of my home & mail the (already postage paid) unit back when done. And for the most part it was easy.

Of course my autonomic dysfunction (Thanks to Sjogren’s) kicked in like a woman in the throes of a menopause whole body sweatfest and drenched my gown. But because of this piece of pie, easy home test, I could not change my pj’s & disrupt the test. It felt like I was wearing a wet, soggy full-body diaper.

I suppose that it never occurred to me that the doc would order the real ‘in lab’ sleep test with all of the bells & whistles. I am lead to believe by those who have already experienced it, that I can count on a night of little sleep and lots of interruptions. For me, that means same night, different location.

 

Oh, The Choices You’ll See

Collage-Masks-1024x576

 

I am back to research drawing board. This time I am trying to learn about CPAP & BiPAP masks. Because of my Sjogren’s affliction, I am particularly concerned about my choice in machines and masks. I have spoken to a few Sjoggies who mentioned that a CPAP (meaning continuous air) dries a non-Sjoggie out quickly. Oh my. Can you imagine what that will do to an already dried out throat & nose?! One person said that she had a problem with the seal causing air to blow into her eyes & quickly dried her eyes out.

Time For A Sjoggie Shout-Out

For those of you who have already lived this fun, please share. Have you found a mask that works especially well for you? I have to admit that with my fatigue and level of sheer exhaustion, I have high hopes for this mask & machine.

Let’s see if we are trying to determine the absolute best mask in our Sjoggie world, what would it look and function like? Of course it needs to be easily removable to accommodate all of our trips to the restroom, as well as our bedside table hydration needs. Must not dry us out worse than we already are (I’m already laughing on the floor). Must not add any pain to our Sjogren’s ravaged bodies. Must not add any peculiar sensations to those of us with neuropathies. Must be easy to adapt to, so as not to interrupt our already sleepless nights. Must allow for those of us who rock n’ roll every  night, full freedom of movement. Hmm. Have I left anything out?

category-womens-cpap-masks

Now normally, I am immediately drawn to the girly pink color mask & the like (sucker for gender marketing), but for this choice..I am looking at form & function before cute.

I know I can count on my Sjoggie-Mates to help me out here. You know that when I mention Show-Grins to a CPAP/BiPAP supplier, I am going to receive the same blank stare we get from various health providers..right?!  So come on now..help me out. Brands, styles, helpful tidbits…all personal Sjoggie input is welcome here.

There Is One Silver Lining

everycloudcoverphoto

 

 

There is one silver lining here..because of Sjogren’s, I have made some wonderful Sjoggie friends and connections. That is the best gift of all.

Looking forward to hearing from you.

SjoDry and Searching

Advertisements

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 Random, Searching for Answers and tagged , , , . Bookmark the permalink.

4 Responses to Another Day, Another Diagnosis

  1. BECKY MCDOWELL says:

    Oh, the mask quandary! I’ve just been through this myself (I believe I previously responded to your earlier blog, too). I recently tried to replace my old mask & frame and found out that it was no longer available. I’ve always (over 20+ years) used a mask with nasal pillows, but for the past month, I’ve been using one that covers the entire nose (https://www.fphcare.com/sleep-apnea/masks/nasal-masks/eson/). Instead of have the nasal pillows that insert in your nostrils, this mask covers the entire nose with a very soft silicone-type material. It molds nicely with the curvatures of your nose/face and you can adjust it quite easily for your own comfort level. I still use a nasal gel when I go to bed, but the dryness I had when I used the nasal pillows has not been present to date. Also, I have been sleeping so much better than with the old one-I usually wake up only once in the night (to take my pain medication & use the bathroom)-I usually go right back to sleep and wake up feeling much more refreshed than before I replaced the mask. By the way, if you are on Medicare, this mask/frame combo requires a full replacement if any part gets worn/fails-Medicare will not cover spare parts on this model.

    I did have to take back the first mask they offered me to replace the old ResMed one. The new nasal pillow one that I tried (http://www.resmed.com/us/en/consumer/products/masks/airfit-p10.html) was very light weight and easy to fit, but I felt like I was suffocating and I felt very little air venting. Every morning, I had a headache after using it all night, so I insisted that they give me something else. (This is just my personal experience, others may love it.) I hope you can find one that fits your needs-do not be afraid of requesting something different if the one you try is uncomfortable after you’ve given it a 7-10 day try!

    BeckyJo

    • Oh Becky..thank you so much! I really appreciate getting this feedback. My little sleep-over is scheduled for June 5th…so I will soon find out for myself. I will definitely take a look
      at the masks you have mentioned.

      Take Care.
      SjoDry

  2. Lisa says:

    Hi Sandy,
    I am currently going through the same testing! Actually, I had the overnight in a sleep clinic and was cleared for Sleep Apnea so now I’m headed back for an over night with MSLT all day the following day to test for Narcolepsy and/or Idiopathic Hypersomnia.
    When I did the first over night they fit me for a mask before I went to sleep and we discussed Sjogren’s and how I was concerned about the mask drying me out more. I was told the mask had a built in humidifier so they believed it might help me. I have no first hand experience because, like I said, I was cleared for Apnea just repeating what I was told.
    I tried two different masks, I think they were the equivalent or close to, the GoLife & either the Full Blue or True Blue not completely sure there. The GoLife seemed to be the lightest and easiest to put on but I didn’t like the feeling it gave me when the air blew up my nose! I felt like it was blowing too hard but they said it was the same pressure as the other mask so..
    Everyone is different so if it works for you, it was the easiest. Good Luck and I hope you get some help and relief!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s