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OHSU Bound - Soon!



Hello. Hello! I have been sleeping in 12-16 hour jags. Amazing. I think it's been about two months since I last did that. Didn't last long either nor will it now so I appreciate it when I get it. It's good news! And I wanted to share with my friends. Thank you for your support. Truly I am grateful. Otay here 'tis:My appointment on the phone was today. I spent a lot of time preparing and worrying, then once we talked I spent more time with his coordinator setting up an appointment. And talking to my mom. On top of all that, I had to go up again and my steroids which makes me feel better so today I got sleep. Finally. I am very swollen so I?m not able to get out much now. Went out yesterday to pay the rent and stuff it gets harder and harder now. Basically I'm on super high stress right now. Nothing to do about it. I gotta go to Portland to the Pituitary neuroendocrinology unit on Valentine?s day :glare: So we?ll be staying the night my mom says. I dunno ain?t gonna be an easy ride with my swelling; I will swell like a mellon even more. The doctor is Dr. Ludlum and he?s the chief director of the Pituitary unit. People fly in from all over the country to see him and his colleages. It appears he offers online help for his out of area patients! I could email him when I'm sick and get a response on what to do. Can you imagine? It?s so wonderful that he?s gonna treat me. I truly feel blessed.He thinks I may have a VERY VERY rare disorder that means I am resistant to steroids. Like antibiotics, the more I take the more I need. Until now, the treatment has been LESS LESS LESS so this is really a shocker and totally accounts for my symptoms. Also means it?s pretty darned amazing I?m alive which I already knew. He will put me on a different steroid that won?t affect the tests so much and test me for pituitary function and adrenal function. I don't think I have a tumor hiding but I could. He even said my cortisol tests of 1 1/2 years ago were too high merely to account for the steroids I take which is worrisome, because it would point to a pit (brain) tumor or adrenal tumor or even a lurker in the pancreas or lung. Basically, steroids are NOT like antibiotics which is why this would be so rare?- they are as effective from day one as they are 10 years later. In all my research I have never heard of this. That's 6 years... I have never heard of this. If this is true, I could be on medical mysteries! HA HA HA. No really. I don?t know what this means on my future outlook. How I would deal with it, how to get better etc. But he was nice and it only took me 12 years to find someone to believe me and to say HEY you could have something seriously wrong that all the other doctors have never seen or heard about but I know because this is what I do. No wonder people fly in from all over the country to be treated by him. My vertigo is gone oh THANK goodness, but my ear still hurts and my throat is swollen. But I really am in a high stress mode and need to stay in as much as possible. I am supposed to dig up as many medical records as I can for him... not easy. Might have to trip over to my attorney and ask her she has the most records of anyone. My file is literally 5 inches thick. Ugh.So I was waiting to have news to write to you basically. The worry over the call hit me hard (the other day), but I went to bed early and woke up late. Blessed sleep is so rare. He told me to prop my legs up above my heart not an easy thing to do so I take that to mean I really need to try to rest. Never easy with my back eh and insomnia. Although the latter seems to be on vacation yay!I won't be visiting my friend or any of my cushie buddies I have known for years while I am there. I am too sick right now and it will only get worse with travel and the stress and excitement of going. This I say in all honesty and to preserve my strength to make it through. I suppose if the answer is to go down on steroids, at some point, that I could still end up in the hospital for months under a supervised tapering. I hope not. To be that long without my mom and cats would suck. But I have been assured that my friend Susan would come and visit me, bring me chocolate and friendship so that makes it easier to contemplate. There are so many cushies up there in Portland I wouldn't be alone much. But I'm pretty good in a hospital setting, just the constant bed rest that gets to me and my back. And no internet? Yikes!I guess I feel really hopeful again. I know I should tamp it down, because he could see my test results as being the opposite of what I've told him and then he might not want to make such a diagnosis without anything to back it up. I don't know. I just know that no matter what I tell myself, I can't help but to be excited. Someone is looking at me in a serious way. That means a lot. He was very nice on the phone. VERY nice.Heck, I think I'm allowed to be excited. He kept asking me 'Prednisone, not hydrocortisone?' as the latter is 4 times less as strong as the former and im like YEAH. I took him back to the beginning wayyy back in '94 and how it came to be that I found myself on steroids, and what happened when I tried to stop taking them as prescribed. Anyways. Yeah. So I am a little busy with records and preparations. Our biggest issue: Should we get a babysitter for the cats? Two households and 10 cats that depend on us. 3 of those are moms outside cats :) I have a neighbor who can pop in on mine once a day for two days. Feed them and maybe scoop the litter. SHe likes cats too so it shouldnt be a problem. I don't think it too much to ask her to swing by moms just once on the morning of the 14th, but mom says no. So I guess we'll let her cats fend for themselves. Big babies. he he he


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