Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Friday Is The Day.


  • Please log in to reply
16 replies to this topic

#1 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 22 August 2007 - 01:42 PM

Well I get my C-Pap machine on Friday. I went to the Neurologist 3 weeks ago. They said I would get a call and have my machine in one week. So one week and three days later I call and they forgot to send the Medical supply store the information. The store called today. They will be bring me a C-Pap machine Friday at 1:00 first it was 10:30 so when they called me this evening with a problem I wans't shocked at all. Well, it was only for a change in time. Now, if the machine works when it arrives, I will be happy. I guess they now make the C-Pap machines with the moisture/vaporizer included. So that is what I will receive. My test results showed sleep apnea and restless leg syndrome. Oxygen levels dropping as low as 86 percent through out the night. I will let everyone know if my quality of sleep is better after a day or two or week or two. I don't know how long it will take for me to notice the amount of real rest or sleep I will get. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 22 August 2007 - 01:46 PM

Oh yeah Sheryl I am so happy for you. I am really curious to how your sleep changes, so thanks for keeping us posted! Happy Zzzzzzzzzzzzzzzzzzzzzzz
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Margaret

Margaret

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 996 posts
  • Location:Pennsylvania

Posted 22 August 2007 - 02:56 PM

Sheryl ,

Gareth has had a C-Pap machine for over 4 years now because his O2 levels drop so low when sleeping. He alternates between the nose plugs and the full mask. He knows that if he doesn't wear it he will wake up at night gasping for air. My dear husband has had one for years due to sleep apnea. also. They aren't the most romantic, but sure helps both of them. Best of luck for you in wearing it. Hope it helps with a good night sleep.

Take care, Everyone.
Margaret

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 22 August 2007 - 04:55 PM

Hi Sheryl,

My husband has had a CPAP machine for over 10 years. He dearly loves it and uses it faithfully, every single night. He never thought he was fatigued and he didn't believe my reports that he was snoring to beat the band and stopping breathing so often at night that I never got any sleep, as I had to keep shoving him to get him going again.

But the sleep study showed that he stopped breathing a whopping 88 times per hour. With his sexy spaceman CPAP (and oxygen hooked into that), he gets a real night's sleep. He hadn't realized that drinking coffee virtually all day long was a symptom of fatigue, and he stopped having lots of little fender benders as soon as he got his CPAP.

The doctors figure he was catching up on his sleep while driving, in little tiny mini-sleeps that he didn't even notice. He still drinks a lot of coffee (which is actually good for his asthma), but he is no longer continually sipping it in desperation to stay alert.

Whether you notice a difference or not, you will still be better off without the strain on your body and immune system, caused by inadequate sleep and oxygen. So don't even consider it an option to ever skip it for a night! Just jump in and do it, come what may.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 22 August 2007 - 06:02 PM

Hi Sheryl,
Well that was a long wait and was such a struggle to get in the first place! I hope it does wonders for your sleep...please do let us know if it works for you! :)
*WestCoast*

********

#6 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 22 August 2007 - 07:26 PM

Glad that chapter is over, Sheryl. Now I am looking forward to your adventures with the actual equipment. Keep us posted, Sweetie.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 Sheryl

Sheryl

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 23 August 2007 - 01:01 AM

I am looking forward to finding out how much fatigue issues will change. Shelly, I have the same problem with coffee consumption. I have tried to cut back but find myself making coffee throughout the day just to get the small boost of energy. I no longer have the severe fatigue. That was a faze of this disease I was glad passed rather quickly. It lasted about 6 months. I sure hope it doesn't come back for a visit for a long time. Thanks for all your responses. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#8 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 23 August 2007 - 04:29 AM

Great news Sheryl. I can't wait to hear the difference it makes for you.
Welcome to the club...
Jennifer

#9 Vee

Vee

    Silver Member

  • Members
  • PipPipPipPip
  • 215 posts

Posted 23 August 2007 - 04:32 AM

Sheryl,

It's about time. They've made you wait long enough.

Sorry I didn't have time to visit last week, I had to run and pick up Cami from band practice and finish shopping for her week at bandcamp. She hasn't called once!!!! You'd think she was enjoying herself away from home or something! lol! When Simone was in bandcamp she called everyday! They are all so different. Oh yea, Simone is now a licensed EMT!! Yeahhhhhh! She still has to take her EMS nationals, and she starts her perimedic in a couple of weeks. Where has the time gone?

Anywho, next time your in town, let me know ahead of time. I miss our lunches.

Warm and Happy to you Darlin'! Sweet Dreams!!!!!!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#10 Sheryl

Sheryl

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 25 August 2007 - 12:42 AM

Ok, I didn't get sweet dreams. I was too busy trying to get back to sleep all night. I am soooooooooooo tired. Ha! I sure hope that was normal first night issues. It sure seemed like I was awake more than normal. Or for longer peroids of time. The machine I received is rather quiet. My breathing in the air and moisture and exhaling makes the noise. OK. Mouth guard, face mask, and now maybe ear plugs. Ha! I received the Bi Pap machine the difference apparently is the bi-pap can control the pressure inhaling and exhaling. So I have different pressures that needed to be considered. I will be taking a nap in a couple of hours I bet. I am sure I will figure out how to get quality sleep soon. Life is good. Grab it an run. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#11 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 25 August 2007 - 06:35 AM

Hi Sheryl,

Bummer - but I bet it will just take a few nights to get used to it and then let's hope you get a bit of quality sleep!

Sweet dreams....
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 25 August 2007 - 06:59 AM

Hi Sheryl,

I'm sure it will take time to get used to all the gadgets. But if you nap, be sure to use the CPAP then, too. Apnea occurs just as much during naps as at night, and if your body detects and "out" from the machine through daytime naps, you may start napping more than sleeping. Besides, napping without a CPAP isn't going to be truly restful, either, due to the apnea episodes.

But you're on the right track, so just stay on it. You can do it!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 25 August 2007 - 07:29 AM

Hi Sheryl,
Well glad to hear that you have the machine up and runnin! I bet things will get easier as time goes on...for now a nap sounds great...for me too! :)
*WestCoast*

********

#14 Sheryl

Sheryl

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 25 August 2007 - 08:10 AM

I will take your advice Shelley. So far I have found things in the kitchen to keep me busy today. I am going to hold off on the nap to see if I sleep from total exhaustion tonight. It was good talking with you today. about getting my membership up and running. I'm good for a year on yet one more thing. Smiles.
Thanks everyone for responding to my messages. I will keep all of you informed hofefully with great news. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 25 August 2007 - 05:20 PM

Hi Sheryl,

It was great talking to you today, too! I'll be curious to see if it works for you to sleep out of exhaustion tonight. I'll bet you are getting your zzzz's already!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 Sheryl

Sheryl

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 26 August 2007 - 12:35 AM

I did sleep a bit better last night. Total exhaustion and a Xanax to relax me. I only woke up or rolled over about 5 times that I'm aware of. I do feel better this morning. My husband slept on the couch for some reason. Humm! He's still there. Oh! well. I'll have more room in the bed if I realize he is gone. I just stay in my one little corner. Here's to sleep. We all need it. Just have to find ways to get it. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#17 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 26 August 2007 - 10:01 AM

Hey good! Maybe with each passing night you will pick up a few more Zzzzzzzzzzzzz
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)