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Hey all,
It's been a little quiet in the Circle lately - so speak up.
MC, how's your post treatment recovery going? Lee, post surgery? Scotty - now that you have a face full o'air? All y'all, quit living your life and get in here and catch me up. Thaaaaaaaannks.....
It's been a little quiet in the Circle lately - so speak up.
MC, how's your post treatment recovery going? Lee, post surgery? Scotty - now that you have a face full o'air? All y'all, quit living your life and get in here and catch me up. Thaaaaaaaannks.....
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SF Bay Area
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Re: Updates!
Wed, April 22, 2009 - 5:08 PMAmaxing I was just coming here to update and ask a question or two... -
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Re: Updates!
Wed, April 22, 2009 - 5:27 PMDamn missed it wanted to have same time stamp as Darla's.... Yes that was supposed to be "amazing".
Well I actually love that mask and machine.... I sleep every well and deep, my dreams are coming back in bits and pieces which is good... the only problem I am having is the insomnia that still haunts me many nights... I still can lay awake for an hour before I fall asleep, I remember the Doctor said it should take only 7-10 mins to fall asleep.... The other problem is now when I wake up I am wide awake with little or no chance of going back to sleep... For many years I would worked 12-16 hrs a day with only 3-4 hrs sleep till finally I would crash after 8-9 days then sleep 20-30 hrs straight... I am afraid I may be getting that back again, it was ok when I could work but now it would be hell...
So I am going to see them next week and they are going to help me deal with it... I used to drink a lot to relax after working all those days like that, I can't due that now for other reasons... I haven't had much luck with the herbal sleep Teas, but then I haven't tried all the brands... I love tea, I used tryptophan in the past and it worked for awhile then I needed to take a bunch and a turkey sandwich...
So any way I hope they can do something to get me a little more balanced on my sleep wake cycles... -
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Re: Updates!
Wed, April 22, 2009 - 5:40 PMDarlin', you don't need no stinkin' time stamp (nor badges) to make you amazing. LaRue, you simply ARE amazing.
I've never, until the past year, had trouble falling asleep. I can fall asleep in my chair, no problem. Go to bed and it's at least an hour for me to finally go to sleep, so I feel your pain, dude. Truly.
My sleep sched is all fouled up right now, and has been for some time. I need to get back on the high road, since I have fallen and I can't get up...
Glad stuff is moving in a good direction, Scotty. Now, for some fine tuning (holy cow, those of us who are not of a "certain age" won't even know WTH I'm talking about...)
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Re: Updates!
Thu, April 23, 2009 - 12:52 PMSweetie,
Recovery takes time. Rebuilding your body's "new normal" sleep pattern takes time. Keep using your machine and try to practice "good sleep skills" like trying to go to bed at a decent hour every night; dark room, peace and quiet, etc. Your body will come to develop it's "new norm". My norm now is NOT what it was years ago; but it is what it is now. You'll adjust. Give it time.
Love,
Leah
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Re: Updates!
Thu, April 23, 2009 - 5:13 PMScotty...
Insomnia is also a lingering effect for me. I am on meds to help me fall asleep but now I have the habitual issue of staying up late.
If I take my meds at 10:00pm, I will be sleepy before midnight. But the thing is, I still wait until 2-3am to take my meds.
As Leah mentioned, it will take time to readjust after years of being a certain way. I would look into some meds for sleep temporarily if it begins to really bother you before that. Short term usage can help some people adjust their sleep schedule.
Personally, I started using medical cannabis - became a med patient a few years ago and never used before (scouts honor if you can believe that!). This is because I know I do not do well with drugs like tricyclics or sleep drugs like Lunesta or Ambien. But for most people, they can be of big help. I also suggest you look to other forums like at www.sleepapnea.org to see how others have tackled the insomnia that sometimes comes with years of unstable sleep patterns.
Thankfully, I mainly work from home so aside from clients not reaching me before 10:00am it does not affect me. Going on a 9-5 which I have done from time to time wipes me out for weeks!
Good luck, man. I am so very thankful the machine is working out so well for you. I am starting to think my compliance issues are not the norm in any way! You and Leah seemed to have adjusted nice and quickly to cpap/bipap therapy. Heron, Dean and others didn't take too long either. It took me three years to get used to facehuggers!
MC -
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Re: Updates!
Fri, April 24, 2009 - 12:26 PMMC, Thanks for the link and support, I for many years 30+ did a kind off shift work... Never knowing exactly when I would be able to sleep or for how long... So I learned to take many naps when I could at any time I could... Sleep at my desk for 15-30 minutes would help me go for hours... Often I would work with the crew 30-40 hrs straight with just 7-8 hrs off before going back to the same shift... I have actually had a cot set up on a freight elevator... It went 8 floors up and down and I would share it with pallets and pallet jacks...Three levels of press rooms and mail room with lots of machinery never bothered a bit by the sound when I hit the cot I was out for as long as I could sleep or till someone came to get me back on the floor... I lived like that once in LA for almost 3 months...!
I would work like that then when I could travel back home I would take a day or two before I could truly fall asleep in my own bed... In fact I still need a lot of white noise to calm my mind... to sleep...
If I could get medical cannabis I would, and I would probably abuse it but what the heck I don't do nothing else anyway... I love to drink but I don't because of my diabetes and the fact I stopped drinking heavily 15 yrs ago...
I had a bit of an advantage with the mask... I have worn breathing masks a lot in the past for work, filter masks and breathing mask with tanks... add hard hats and goggles... so this mask is nothing to me...
I am glad for this group and the short time I've been a part of it, I have been helped a lot....thanks to you all...!
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Re: Updates!
Thu, April 23, 2009 - 5:04 PMPost surgery update:
Took a very important blood test yesterday which will determine if I need any more radioactive iodine - which would not be a big deal if I needed it since it is very tolerable.
If tests are good, I am done with treatment and look forward to yearly exams to keep things in check!
MC -
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Re: Updates!
Fri, April 24, 2009 - 2:20 PMMC,
Our hopes and prayers are with you!
Love,
Leah -
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Re: Updates!
Fri, May 1, 2009 - 4:40 PMHey mc,
Have you heard anything on your bloodwork yet?
Share if you want, when you want, but we out here in the ethers do care!!!
Hugs,
D. -
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Re: Updates!
Tue, May 5, 2009 - 3:12 PMMy updates...
Sorry for delay - been distracted...
My blood tests and checkup were for the following:
1. Overall recovery
I am doing great!
2. PTH (Parathyroid levels)
My PT glands were autotransplanted and they take up to year to kick back in. So far, progress is there but still need to take massive amounts of calcium for a while. You know those horse pill calcium supplements for women? I take 10-12 of those a day and that is down from 16-20.
3. TSH (thyroid stimulating hormone)
Levels are good.
4. Thyroglobulin (affected by both amounts of thyroid hormone in my system and any remaining cells in hiding)
Still a bit high. I will have my thyroid hormone dose increased and then they will check again in August. If still high then, maybe one more does of RAI (radioactive iodine). Doc thought I had already done two doses so I guess they expected two doses. My endocrinologist is a bit slow on the draw.
So, for now - no worries and no treatment. My scenario is NOT atypical and they don't seem to be worried too much.
Thanks, everyone!
MIke -
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Re: Updates!
Tue, May 5, 2009 - 11:26 PMGreat to hear from you, MC and I'm so thankful that the news is good! Keep it up, babe!
Love,
Leah -
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Re: Updates!
Mon, May 18, 2009 - 9:45 AMHey All!!!!
Sorry, I have been away from Tribes for a while. I had a lot of family life to deal with over that past few months. My brother-in-law got married, my wife received her MBA on my birthday (best gift ever) and on a sad note, a close friend of mine lost both his parents to cancer.
I have gotten positive feedback from my docs at the Mayo and I have lost over 80 lbs since I started this process. While I have not found any foods that I cannot eat, my tastes have charged. I found myself eating more fish, fruits and veggies over red meat, chicken or pork. I was a big bread lover; nothing was better to me than toasted sourdough and butter. However, I bought a loaf and it went bad before I finished it. In the past, it would not have lasted 3 days.
Now that my wife has more time and we have been talking about moving to a calorie restrictive lifestyle. She feels she needs to lose some weight and get into better shape. Leah had such little time for herself between working full time and going to school. She wants really wants to focus our free time together to getting healthier.
With that said, we have found out the pain I have been dealing with in my feet was not diabetic neuropathy. Since my surgery, the diabetes has gone away, but the pain has gotten worse. I would have not thought this, but with the rapid weight loss, it has put additional stress on my two herniated discs in my lower back.
I don’t know when the medical community stated pushing anti-depression meds for pain relief, but they have done jack sh*t for me. I had gotten some pain relief patches that worked ok and they did help me stay asleep throughout the night, but my insurance has a $200 co-pay for a month supply and we cannot afford that. I have had very little sleep for almost 2 weeks and I finished my second anti-depression again with no relief. I am waiting for a call back from my pain doctor to prescribe something stronger.
I wish Florida allowed the use of medical-grade Cannabis. I can deal with the pain during the day, but I just want something to help me sleep.
I would like to be able to report that the surgery has fixed the Hypersomnia related to the sleep apnea and it may have, but until I get some relief from the pain and get some quality sleep, I won’t know.
Lee -
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Re: Updates!
Mon, May 18, 2009 - 10:00 AMLee!
I am so happy the surgery has, in the big picture, resulted in positive outcome. Sorry to hear about your back, however. And that you were prescribed antidepressants for pain.
On the one hand, hooray for the diabetes going away with the weight loss. That is awesome. And, I guess it isn't bad news to hear the foot pain was not diabetes related.
On the other hand, sorry about your foot pain that still exists and the stress on your discs. And that all your doctor could conclude was to give your anti-depressants. While I do understand that depression can affect things such as pain it seems they have presumed something about you! Maybe a presumed a lot about you. :( Sigh.
Well, here's to the weight loss and no more diabetes!
MC -
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Re: Updates!
Mon, May 18, 2009 - 4:07 PMoh, I agree, the big picture, things are great and I am so happy about the weight loss and the diabetes going away...if I came across frustrate, it is from lack of sleep. And, I am sorry I gave the impression that is all they are doing...again the frustration. In late June I have a bunch more tests they are going to run on my nerve damage from my back to my feet. Also, they just got my results from my latest MRI.
Its the waiting game, I am not happy with. When I don't sleep, I get mean and short tempered. I know I wont be able to make it until June without any sleep. Its hard to understand why they can't give me something to hold me over until the other test results come it. -
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Re: Updates!
Mon, May 18, 2009 - 5:14 PMI dunno either - esp. after surgery (you would think they want you to get all the rest you can).
I have a whole host of grievances after my surgery as well.
Here's to continued benefits from the procedure and hopefully a "patch-it-kit" for your sleep woes until they find out more.
:)
MC
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Re: Updates!
Thu, May 21, 2009 - 8:01 PMLee..80 lbs..wow
that is great..
and that is a ton of weight too..
has the apnea gotten any better do you know?
is the cpap..not helping you sleep deep enough?
is it the pain in your legs that keeps waking you up?
glad things are moving forward to you..
and yippee..for all the good news..
and sori about your friend losing both parents..that is tough..
bet he is glad to have you there to support him..best you can!
hugss..Heron~ -
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Re: Updates!
Sat, May 23, 2009 - 7:08 AM<…has the apnea gotten any better do you know?>
I had another sleep study in April, and they lowered my bipap pressure from 16/12 to 10/6. Within a week after the setting charged, I started waking up with morning headaches again. Now they want to do a day time sleep study to determine how fast I fall asleep. So, I am not sure at this point.
<…is the cpap..not helping you sleep deep enough?>
<…is it the pain in your legs that keeps waking you up?>
The problem I have is the pain in my feet is keeping me awake and when I do fall asleep, it wake me up again. So, I hard know if the apnea has gotten better, or not. Plus, the pain meds have been my sleepy as well.
With all that said and the pain is frustrating, but my overall health is much better, and I am grateful I had the surgery.
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Re: Updates!
Tue, May 5, 2009 - 4:18 AMyikes..11 messages before i checked in..
Scotty..it sounds like you have made progress..even with the difficulty of falling asleep!
nothing i dread ..more than laying there tossing and turning..trying to quiet my mind and body enough to sleep!
I do take trazadone to help me..buttttttttttt
I have taken this for years..and the new doc ..dropped my dose..SIGH..as she thought it may bounce with the lyrica..and make me fall too deep to sleep.. and with the apnea... well ..no other docs ...found that to be an issue.. ..I have been on the combo for 2 plus years
but at this point..i am so exhausted before i fall asleep..i seem..most nights.if i do not have my ..tea too late..i am fine..
i also have a tv in my room..which bores the crap out of me..helps me fall asleep too..I use the automatic shut off with it..than i can roll over when i am ready..and the tv..shuts itself off!
Scotty..so glad you found some friendship and help with the folks here..THEY ARE GREAT!
MC....so are you saying your blood tests came out fine and you are done with the treatment now?
that is so fabulous..stay on that healing road man..you are the best!
hugss to all
and..since his surgery..we haven't heard from Lee...been kinda wondernig how he is making out! -
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Re: Updates!
Mon, May 25, 2009 - 6:02 PMWell - possibly not quite done but no big surprises.
I might one more does of radioactive iodine to take - we'll see in august.
But no one is worried so I won't be either. :)
Mike -
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Re: Updates!
Mon, May 25, 2009 - 6:05 PMGood Luck...I am sure everything will be fine...no worries here =) -
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Re: Updates!
Mon, May 25, 2009 - 8:00 PMBut mc. you already have a glowing personality!!!
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