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Everything posted by spiny

  1. spiny


    Mystina, I actually tried that last night and managed 1/2 a sandwich made of their dinner. It did help. Usually I am finished after one bite of their dinner. I appreciate the rest of your advice as well. spiny
  2. spiny

    D3 Update

    Can't ya'll get the 'burpless' kind? No burps with those, but they are rather huge. Kind of like a fat, short, Gummy Worm.
  3. spiny


    How do you guys EAT when you are going thru this? I am having a hell of a time - don't want to eat - nothing sounds good - my appetite is down to zero. In addition, I need to eat for my head, right? I have taken Magesterol (Megase) in the past for this, but now I don't want to take anything that might mess me up more. Taking the D3 regime (?) has helped. I can even snap out a good one liner and do math, rather complicated math, in my head again!!!!!! 8-) Taking the Calcium midday with juice has helped I think. Any ideas appreciated. By the way, we have one pizza place and two burger pl
  4. spiny

    Nat Geo

    Yep. I got the part where it was in Germany and the poor man on the floor was Martin Crouse I think. Thanks Many thanks AO! 8-) spiny
  5. Ah, tried it ONCE. Total disaster. :'( spiny
  6. spiny

    Nat Geo

    I got to watch part of the segment on LSD today and the 5 out of 6 who got relief from it!!!!!!! I bet I could order a copy from them. Money is money. I fell asleep. Also, I found it by accident and missed the beginning. But, my husband did get to see the man with the high pain CH. Guess I don't look as weird to him now. Any input here? spiny
  7. spiny


    AO, It is also a good idea to get a blood pressure cuff for home use as this stuff lowers blood pressure. That is why I can't take a higher dose. Also, do it right. Sit, take ten deep breaths and then start - that gives you a better idea of your sleeping BP. You might be really surprised at your reading. I was. I too have read about the ER not being as good for us. I am sorry it did not work for you after the ER series. I haven't decided whether to ask for a change or not. It also allows for a higher dose in the evening to help more thru the night. From what you say, I will re-consider c
  8. I'm reading. And waiting for more input. Everyone should jump on the bandwagon and help us 'new to the forum' CHer's. I bet that I am not the only one who needs and would appreciate it. Been in my hole, all alone, because no one else has these and can't fathom the pain and dis-ability we suffer with them. If not for my husband, I would have said Ciao some years ago. spiny
  9. spiny


    Thank You Lieutenant2, I'm not up for anymore pills and do not intend to return to the Idiots office. spiny who has had a pretty good day
  10. spiny


    GOOD Morning! Yesterday sucked, but worked. I napped in the am-woke with the Beast. Hit the o2 and a hot bath with cold cloth on my face. ATE: Read that again, I actually ate real food! 8-) Got hit hard again, twice. Then, down for a nap. I was exhausted. Woke at 6:30pm!!! Small hit so onto the O2 again. Killed it. 8-) Back to sleep at 1:00am. Had to watch The Big Bang Theory for my 'laugh' therapy. I SLEPT ALL NIGHT!!! Yes I am yelling the good news. ;D Maybe today is it-the end of this cycle. Only been going on since Sept 15th. Next week does make three months and that is way to
  11. A very nice nap from 9 to 12. :)My hated head alarm woke me. So, start the coffee and hit the O2. O2 worked again, thank heavens. Then, the coffee kicked in and finished the work. For the moment, I am just jittery and bone tired. After this I will try to eat something. That would be a novel idea. CHfather: Thanks. I am there on everything except the D3. I upped it this morning. The energy drinks make me nauseous, so coffee is my poison. I did not know about offsetting the meds. I will try that today. Thank you. AO: I had a great appetite at full dose of Pred., not when it was lower.
  12. Good Morning, Yup, last night sucked again. First four hits, I hugged my O2. Bet I burned thru 1/2 a tank last two days. After four good hits, I gave up on the O2 and went for coffee. Then a HOT bath to go with the coffee, as I was freezing and the heat pulls my mind to my burning feet and behind in the water. After 1/2 hour and the addition of lots of hot water the octopus climbed back in my temple. Good thing we have a boiler that provides unlimited hot water. 8-)Then, sit up for an hour and when the pain receeds to just sore and hot, I get to lie down with my neck in that special pos
  13. I shoot: competitively and hunting. OK. Now that that is said and out there, I can go on to the rest. I read, raise cows, chickens, and ducks. I garden and plant lots of flowers. 8-) Flowers make me happy. We have two businesses, as well. Currently, my other hobby is napping. :-[ spiny
  14. Lovely, Finished the Pred. Friday. Doing really very well for a few days. Shadows pretty constant, guess that's a Kip3/4. But, actually started back on Benedryl at bedtime for allergies since I am off extra meds. Last night: Hello my beastie. And you are here why? O2 for 10-15 minutes made it all better. Well, the shadow came in a few minutes later. OK. Take my Vits. and Benedryl and hit the sack. Half hour later, ready for sleep, head down and 'Hello my beastie' again! > OK OK Back to the O2 and stay longer after it is gone this time. Good to go. Sit up for 1/2 hour so I don't get a
  15. I volunteer to help. After all, a med made EXPRESSLY for CH would be wonderful, wouldn't it? 8-) I bet it would beat the sometimes lousy seconds we get from the drug companies! > spiny
  16. Hi Renee, I'm new here too. These are the greatest group of people to talk to when everything else sucks or is wonderful. They share your joy and pain. I do understand your 'needle play' and perhaps you have tried cuts too. Then there is the 'hook suspension' route. My daughter has tried them all. She has had severe scoliosis since she was 8 and had to wear a body brace 23 hours a day. You can only guess at the mental anguish/damage of grade school/middle school with your body encased in plastic! Then, there is the pain of the brace itself. After that she had two surgeries and will ne
  17. Hi Jeff, I'm new, but I have had CH since 1997 or so. I also have Scoliosis and so do both my daughters. No connection. They are FINALLY researching and finding Scoliosis is actually inherited! Usually from mother to daughter since it is much more common in females. My son has a bit of a curve as well. Duke did the study. Anyway, the muscle difference is very common with the curve. Think: Curve to left, muscles on left are more contracted all the time and muscles on the right are more stretched. Therefore, muscles on the right appear much smaller than those on the left. It can als
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