Wednesday, December 12, 2012

My life. Changed forever.

It's no secret that RA causes extreme exhaustion and energy is limited. Taking naps during the day has become the norm for so many of us. Not sleeping at night and not waking up refreshed is a daily struggle for most. A combination of RA and the medications we take to stop the joint damage contributes to much of that. My exhaustion was so bad I could only drive around town. No long trips, I would fall asleep at the wheel. Or so I thought until recently.

Back in August I took a trip across the country and went to CA to see my Squeaky Joints partner in crime Peggy Piscopo. Her family was gracious enough to rearrange themselves and give me my own room. I'm sure that had something to do with the fact that I snore, LOUD. I thought it was due to some weight gain over the past year. Lose some weight and I'd sleep better. So not the case.

Peggy called me when I got back home and gave me some interesting information. She asked if I knew that I gasp for air in my sleep. Apparently I make a choking sound too. She could hear this from her bedroom and actually had come to my room to check on me several times. News to me! Joe never mentioned that he heard anything like that.

I immediately made an appointment with my general doctor and luckily got in the next day. She was concerned and gave me the name of a sleep doctor. A few days later I was sitting in the sleep doctors office going over my health story once again.

It was a real eye opener. She kept asking me questions and my answer was always "well yeah, I have RA". Do I hurt when I wake up, do I feel like I'm not rested, are you in pain? Suddenly, like a light bulb turning on, I realize my RA is not what is making me so miserable. It could be the way I sleep! I'll never forget the hope I felt in that moment!

Dr. H was concerned that I was having surgery in 2 weeks and having undiagnosed sleep apnea and general anesthesia is a dangerous combo. Another thing clicked! I had kidney surgery back in April. A 1/2 hour surgery took 4 hours because I crashed. My BP dropped so low, they had to put a breathing tube in, several complications. I am very lucky. Very very lucky.

Dr. H was convinced based on my symptoms that I had sleep apnea. My airway is as small as a child's. She was ready to write me an RX for a CPAP machine on the spot. For those of you that don't know a CPAP machine forces air into your lungs via a face mask. She ordered an immediate sleep study. She actually wanted me to go right in that night. So off I went to the hospital. It actually was really nice. They have the rooms set up like hotel rooms. Big bed. Big TV. For those of you that have never done a sleep study it's really not that bad. You go to the hospital at your normal bedtime, they put some electrodes on you and monitor you while you sleep.

2 days later I was back in Dr. H's office for the results. Usually they take 2 weeks but she had them expedited because of the upcoming surgery and my symptoms. I was diagnosed with severe sleep apnea. I stopped breathing 40 times an hour, a minute each time. That's 40 minutes of every hour I slept that I was not breathing. How scary is that? She sends me immediately to get a CPAP machine.

I start using the machine that night. I wake up the next morning. I feel pretty good. I use the machine a few more days and I start feeling a bit more rested. I have my surgery and it goes smooth. 2 weeks later I go in for another sleep study this time with my machine. They wanted to monitor me and make some adjustments to the machine settings to make sure I was getting the correct amount of air. I go back to Dr. H for my results and she fixed the settings.

That night I slept like a baby. I woke up refreshed. I woke up and I wasn't stiff. I didn't even hit the snooze button! As I started using the CPAP every night I was feeling so much better during the day. I no longer needed a nap.
Months later I am a new person! I have energy. My RA is under control. The medications I am on are working. They have been working all along. My Rheumatologist had said at my last visit that she was confused at my exhaustion when I didn't have any swelling and my blood work came back that the RA was under control. It was the sleep apnea!

My life has changed forever! I have my life back. I have time back. Exhaustion has taken me away from my family, friends, and all the things I love. I am still limited on what I can physically do because of severe joint damage but I can reconnect with all those I have drifted from. Little things I can do now like help Joe keep the house clean, hang out with Julia, see more of my friends and relatives. Blog more!

Peggy has given my so many gifts. She is my RA soulmate. This gift I will never forget. She gave me my life back and that is priceless. She gave Joe his wife back. She gave Julia her mom back. Thank you Peggy. I dedicate this post to you. I love you.


  1. I want to tell you that you are the sister I never had... although sadly I do have a sister. I can't imagine my life without you. You are my chosen sister... I love you with all my heart. I am glad that you don't snore anymore as we can sleep in the same room! I love you.

  2. Wow! That's amazing!! Ive had JRA since i was 1 and im 31 now but my fatigue has gotten to the point that i can't rip myself out of bed or off the couch. My dr. also thought sleep apnea and had me do a home sleep study. (weird!) Turns out no sleep apnea. So, still wondered why after so many years my fatigue got so bad in such a short time. Turns out I may have Fibro and Chronic Fatigue. I say "may" because there isnt a real test for it but all the symptoms are there... insomnia, fatigue, brain fog, flu like symptoms... well, the insomnia was causing me to not get a good deep sleep. So i am now on sleeping pills. But I still have the worst fatigue and don't know what to do about it. You're story is great and i am so happy you found out what was causing most of your health problems and you feel better! I have an interesting story thats unique to some and was very hard for me to put out there but if you are interested, heres the link. My goal is to raise awareness and help as many JRA and RA patients as possible but i am ALWAYS open to advice because clearly i'm still not feeling great, although my health problems are a list a mile long! Thanks for telling this and I hope you get a chance to check out my story! I just launched it so there is only to posts and the about me so far. Have a great day!

  3. Isn't is good night's sleep a wonderful thing!? Glad you got it figured out and got on a CPAP machine. Wishing you many nights of good ZZZZzzzzs.

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