To Sleep, Perchance To Dream
Before I get into what's been going on I want to thank you all for your encouragement and kind words. Knowing that you're out there standing by truly helps when the going gets tough. Thank you and God bless.
About three months ago I began to feel the effects of ALS in my lungs. As my breathing became shallower it began to have negative effects on my sleep and appetite. I saw a pulmonary specialist who, at that time, didn't seem to think I needed any kind of help. He was wrong. My sleep pattern deteriorated to where I was only sleeping a few hours a night. I started having hallucinations in the wee hours of the morning, feeling nauseous during the day and my appetite deteriorated to the point of being dangerous.
I returned to the ALS clinic and saw a new pulmonary doctor and my neurologist who both decided that a noninvasive breathing ventilator was a must at night and wouldn't hurt during the day if I was excessively tired. A sleep study was required for insurance purposes (if you can afford them and have needed them, you have noticed that more often than necessary, insurance companies require you to waste money proving what the doctors already know, and all of my doctors agree that in cases of ALS or any catastrophic illness, there should be fewer questions about a patient's needs; they are as fed up with the insurance dance as we are) but before the obvious results of the study came in I ended up in the hospital. Had I received my BiPAP when it was requested, the hospital could have been avoided and thousands of dollars saved.
My frustration with insurance companies aside, I am home now and am breathing at night with the assistance of said BiPAP machine. Blessed, wonderful sleep has been restored, my appetite is slowly returning, nausea is receding and although I am somewhat weaker, I am feeling better each day. I am looking forward to welcoming spring, in spite of the fact that it seems to have lost its way to Vermont, and reveling in the rebirth and rejuvenation that comes each year at this time.
This post would not be complete without mentioning my family. Their love and support continue to shine through and they keep me going when I feel like I cannot. And my angel, Barbara, who is not only a caregiver but also a good and trusted friend, as is Lolly, who is always there.
About three months ago I began to feel the effects of ALS in my lungs. As my breathing became shallower it began to have negative effects on my sleep and appetite. I saw a pulmonary specialist who, at that time, didn't seem to think I needed any kind of help. He was wrong. My sleep pattern deteriorated to where I was only sleeping a few hours a night. I started having hallucinations in the wee hours of the morning, feeling nauseous during the day and my appetite deteriorated to the point of being dangerous.
I returned to the ALS clinic and saw a new pulmonary doctor and my neurologist who both decided that a noninvasive breathing ventilator was a must at night and wouldn't hurt during the day if I was excessively tired. A sleep study was required for insurance purposes (if you can afford them and have needed them, you have noticed that more often than necessary, insurance companies require you to waste money proving what the doctors already know, and all of my doctors agree that in cases of ALS or any catastrophic illness, there should be fewer questions about a patient's needs; they are as fed up with the insurance dance as we are) but before the obvious results of the study came in I ended up in the hospital. Had I received my BiPAP when it was requested, the hospital could have been avoided and thousands of dollars saved.
My frustration with insurance companies aside, I am home now and am breathing at night with the assistance of said BiPAP machine. Blessed, wonderful sleep has been restored, my appetite is slowly returning, nausea is receding and although I am somewhat weaker, I am feeling better each day. I am looking forward to welcoming spring, in spite of the fact that it seems to have lost its way to Vermont, and reveling in the rebirth and rejuvenation that comes each year at this time.
This post would not be complete without mentioning my family. Their love and support continue to shine through and they keep me going when I feel like I cannot. And my angel, Barbara, who is not only a caregiver but also a good and trusted friend, as is Lolly, who is always there.
posted by Pam at 9:09 AM
13 Comments:
I was thrilled to see that you had commented on my latest blog...and I couldn't wait to get on over here and to check on you.
Thank goodness that you are on the right track again. I know it must have been a scary and frustrating time for you.
You are a great inspiration in my life. Lots of hugs, Ginnie
So great to see you up and going (even if slower). Glad your oxygen is helpin, too. I have a number of friends who use a cpap at night. My husband has an oxygen machine to help him sleep better.
I am glad you are improving, I've really missed you. xo
PS I am slowly beginning to feel better about Obama... I hope that well before November I'll be feeling inspired again....
Aw, I'm sorry that you've been having such a tough time, but I'm glad for you that the situation has improved.
Pam, I'm so glad to see you back. So very glad.
Oh Pam - it's so great to see your post and to hear that you've got your BiPAP and feeling better.
My hubby HAS to sleep with a C-PAP. These little machines are life-savers.
I'm wishing you sunshine and warming breezes. I am so over winter!
Bring on Spring.
Big Hug,
Cathy
please take care of yourself. I am so sorry you've had such a horrid time of it.
Oh, and by the way - that picture! I've had sleepless nights when I looked in the mirror and saw a visage not too different from that :0)
Pam - Welcome back! You have been in my thoughts often and I'm happy to hear you are getting your breathing problems under control.
I missed your cheerful and positive attitude and I'm sure that Spring will coming your way soon. Rest up and get your strength back - I missed you.
Glad to hear you got that BPap machine. My husband also had a Concentrator. He used both for many years for respiratory problems due to med. probs. different than yours. He found adjusting to the face mask a problem initially, but finally got the style that worked best for him, and learned to get it in position more easily. We all have issues, sometimes, with anything new.
The behaviors you describe surely do play havoc with a person's life, as I can remember what he experienced for much too long beginning the years when he was still working and before he finally had the sleep study.
I know what you mean about the ins. co. frustration and tests in too many other differing situations, not just the one you describe.
Good you're back to writing your post some, and so glad you're feeling much better. Hope you have sweet dreams, now!
Hi dear Pam,
I'm so glad I checked back again on you this morning. Thanks for telling us about your harrowing journey. It sounds so frightening -- all of it, from the hallucinations and nausea, to the battle with the Titans. What a great thing that you are sleeping again and that you are gradually feeling better. That image of the hallucination scared the socks off of me.
I'm anxiously awaiting your return and a spring full of energy.
Love ya,
Batman
Ditto!
Breathing trouble is my worst fear. I know you're a fighter, but I'm sorry none the less. It SUCKS and if I could come over there and breathe half my breath into you, I would. We could then both lounge on the couch, get high on Idgy's cat nip, and watch stupid television.
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