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Adrienne

Member of the 1000 Post Club
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    973
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About Adrienne

  • Rank
    Steroid Sick and Posioned
  • Birthday 12/27/1971

Profile Information

  • Location
    Oregon
  • Interests
    Reading, writing, cats
  1. Adrienne

    Im Still Around

    It's me. Adrienne. I see it's been almost two years since I've posted in here. AMAZING. Wow. How time flies when you're on Methadone and Hydromorphone!!! No really. I am working again on trying to come back to the online world. I am so lonely without it. It's great to have hooked up with Paula again. I hope we can get to know each other better through emails: I miss having a fellow Cushing's survivor to talk to, and I really miss having ANYONE to talk to. And the people I've met here arent just ANYONE they're extra special super duper wonderful peeps. Yeah. I do indeed want to write. Maybe more fiction for once you know? I was just starting out writing short stories. I want to explore so much the whole online world, having information at your fingertips, well it's truly intoicating. Thrilling. At least that's how i used to feel. I dont think it'll ever be able to hole my attention as it once did-- i used to be so naive, especially for someone my age. Now im jaded if anyone ever is. But there's hours... Lots of hours to go through. Many hours in a day. I need to fill them somehow with more than just reading, tv, day dreaming. There are so many people I need to help, to educate about these steroids and the newly defined diagnosis of Steroid Withdrawl Syndrome, SWS. DOctors arent even aware of this! So my goal is to get my site up. Not because the world needs another website I mean everything cushings is here... but there is this SWS and I can help others suffering through it as I am. NEarly every cushie will at some point need steroids... or wil have taken them at one point, I mean. The symptoms suck and the confusion they cause insidious like a foul poison seeping through our ranks. Anyways, just saying there's things i want to DO. Ive been on bedrest for a year. Its been just 1 year of the past 4 that ive actually been in bed most of the day, resting my thrashed back and my necrotic hips. It takes a lot to keep me down like that. A lot of meds. Doctors not wanting to give me Xanax nowadays cause they are newly licensed unable to understand i wont kill myself with my meds i mean im still here and im slowly improving right? But seeing a psychiatrist she says she's gonna speak to him... try to help me. She will probably be able to prescribe it for me in the coming months. I think. Maybe. I mean i can buy them myself on the internet i just HATE going against doctors orders or doing something not honest ha. I shouldnt care. But yeah so basically i have to put together a big desk in a new armoire ($150.00) amazing deal but i cant sit on the floor to put it together. Argh! SO been putting it off. Anyways my ma says she'l put it together for me for Christmas. I should have my desk and chair rigged up so i can keep my legs up. GOT to do that. I just have to go slow. Eveyrthing is SO slow now. I ve always been so fast fast fast i talk fast i type fast i think fast. But ive been so slowed by cushings and the meds. SO I will be back, blogging here and posting some and learning how to setup my website. Hopefully learning how to be social again.Ha. God willing. Oh yeah, anyone curious? I've gone these past 4 years and found God. Course He was always there it was me who was missing... missing the peace that true inner bible based God based Jesus based faith, not man faith or a one verse preacher. I go to church from my bed-- on tv. NOT an evangelist either... his name is Pastor Arnold Murray, from the Shepherd's Chapel Network. All i know is they have their own satellite in space lol they transmit to over 1 million homes, all over the world. America, China, Canada, India i think just so many places. Well he's teaching me the bible simply by reading it word for word. SO I am learning the bible but just as importantly I am learning HISstory in what I am reading, explaining it to me. To millions. Just a man, a camera, and a bible. That's it. DISH network here in Oregon I dunno is channel 216; also 9407 sometimes. I've believed since i was 14 but i had no idea what i believed other than what i FELT. Now... I have such an inner peace, cause all the things i've researched in new age books and so on for YEARS just make sense now. I found that my ideals fit right in with what the bible says. And i had so many misconceptions. Been taught the wrong thing in the few times I had ANY exposure to religion. Anyways. Im a good student. Just frustrating not to have anyone to talk to. And still there is the reason for the season... that is, i had to disappear because i needed NO STRESS even good stress it was making me so sick. So much sicker than i should have been. All part of both cvushings AND Steroid Withdrawl Syndrome. So i know i have to take it easy. But im much better at speaking my mind now. I can say I HAVE TO GET BACK TO YOU or I HAVE TO GO NOW i mean i never realized how absolutely MEEK i was. And no men allowed lol. A relationship is not what i need now. I feel that in five years i'll be BETTER than i am now. THis is the first time ive really had enough hope to believe the future will be better than the present. Just this inner peace and worry that's been washed away. Dunno. But it's long overdue. I should have read much more than Genesis years ago! BUt it was college literature classes that gave me the skills to read such complicated diction etc. and to make sense of it. See. If i knew i would sit here and write all this i would have replie to Paula tonight. Sorry Paula! But you get the picture and i just got online and saw your lovely message tonight so im letting you know im getting my butt in gear! Hello everyone!
  2. Wow these boards look different and spiffy-- every time I come around sth is diff lol. All good! It's been what August since your nephrectomy MaryO? It took me a year until the pain was enough to get through the day without pain pills [not much as i was SO YOUNG] and it reallllly hurt. I dont know if you had the lap or the 9 inch scar-- I had to 9 incher and all those muscles cut through. Either way they treat it like its sooo easy to recover from and indeed it isnt. I had the right kidney and adrenal removed, and immediately the left kidney which was fine hurt. A lot. Had me in the ER about 6 times that first year. I believe it was the adjustment it went through as well as my body. I have renal colic now, unexplained pain really. Its poss i could have a nephotic syndrome something going on but only a biopsy would show it and they wont do it with only one kidney nope. So i stay away from foods with too high nitrates in them thats a killer one sausage and im doubled over. Tooo much protein could mean it has to work too hard. As in big protein meals, three times a day every day, that would be too much for me, but one meal of protein a day is fine. Anwyays you dont find many people MaryO who have kidneys removed too so thought I might share a few things that are pretty much unwritten about. My surgery was in 89 so much has changed i am sure but back then it was treated like it was no big deal and you know what it is. Add to that the cancer... and i hope hope hope you are okay there. Youve been through so much so you give yourself a hand and watch ANY ANY ANY NSAIDS as in Tylenol 3 & 4, Aleve or Naprosyn, Acetaminophen even altho it isnt a strict one. These drugs are poisonous to the kidneys and i wasnt told of this until 15 years after my surgery! Once i cut out all those pain relievers [for cushings AND needing new hips and severe back pain] THE PAIN I WAS having sooo often completely went away! I am on Methadone and Dilaudin for the pain now and yes these are both very strong medications but my pain is well really bad. I am able to think on them tho... codeine not so. Just be careful of that kid[ney] in your own way and take a HUG from me. Im so glad to see your blog post! GO MARY GO! Adrienne (the one who only posts when she thinks ya might forget her ha ha no not really not online hurts to sit too much swelling) PS: Adrenal woke up. After 13 years of steroids! Down to only 10mgs prednisone. Trick? .50mg taperings. At a time. Works.
  3. Hi MaryO, everyone. To share good news I am finally getting a recliner and a laptop. I hope to keep my swelling down that restricts my internet usage so so much. So I can help. I am totally housebound and just now giving up my apartment to live with my mom. i was alone for 1 1/2 years and that's about all I can take. I am having adrenal crises just from havign teeth [cushings! grr] pulled and have gained 60 lbs in water. I have a good doctor after firing my last one and Dr. Ludlam is my excellent endo on call. I am lucky but doing worse than ever for tapering. Point is i cant go out attend meetings or do anything and i never have been able to. But i can help online as i used to if i can keep the swelling under control with the laptop and recliner. I dont cant even sleep in a bed i sleep in a couch and i cant roll over or sit up easily do am REALLY looking forward to my chair. Maybe I can do so much more again as i used to, so far back nobody remembers but i used to have so much to give so much to help with. Its hard being the only cushie so sick from just steroids and still on so much so many. Theres a new diagnoses coming out just now that ive always had which is an extreme resistance to and sensitivty to steroids. Steroid Withdrawal Syndrome is what theyre calling it. I crash like anyone else... as if i had a tumor. I mostly have a good attitude still but i am angry and go thru a lot of mental angst because of my decline and been out of work for 6 years still fighting for social security, still fighting to keep my hips from breaking. I can email and thats about it. I am worried about our MaryO and want to help and some of these on the list I know i can do and more and more until i can really make a difference again well thats my goal. I hope my freedome with a laptop and chair will help. The chair was only 450.00 total and i hope i dont tip it over with my weight but its extra large. We shall see. We said we'd shore it up with boards if need be! Id love the talk to cushies more on the phone i have free call plan in USA and CANADA 24/7. So as soon as i am more stable... if i am ever out of the wooods so tp speak gosh i miss giving back. All i can do is take from my mom and friends i have nothing to give at the moment but i think of you all with so much love and compassion. And MaryO, that nephrectomy was hard for me to recovr from and i was 17 at the time. So please take it easy and it and know it will take time for the muscles to work again and the sensation to come back. You're not alone! My doctor is a self ascribed ENDO GEEK and it is possible she could help further our cause. I will keep it in mind... Im working so hard to come back and get better. Im not giving up though so nobody else better either ya hear
  4. This question always gets me too. And the answer is always changing depending on the resource. You know, the new Patricia Cornwell books talks about pit tumors. Its obvious, my mom and sister say [as I have yet to read it] that theyre speaking of csuhings. But never ONCE is that word used. I find that a lot. The news sources speak of cushings as the underlying condition, without ever NAMING it cushings. Annoying!
  5. My mom just bought some stamps. Theyre cool!
  6. Me too Diane. HUGS I write too. Man do I write. You're not alone. I know it feels like it but you're not.
  7. Okay I too should have my flag and such up. I love these ideas whoot! LOVE to have symbols of the MAIN cushings illness or suspected one. Could be as simple as a box color coded with a big "S" for steroids etc. Cool.
  8. Adrienne

    down a few spoons

    I understand Lorrie. I do. I want a maid waaaahhhh
  9. Adrienne

    battle with depression

    Aww sorry to hear you're hurting Lorrie HUGS You have to wean off anti-depressants. When I tried to stop cold turkey from my Lexapro I was psychotic THEN I found out that like steroids, you HAVE to wean. It isn't widely known. But it's all over the reasearch now. So be careful! Also had reactions to Paxil weaning and erm others
  10. Adrienne

    7/23/05

    That's so awesome Lorrie! Good for you. I wish I had someone to talk to when I went through my nephrectomy as I was only 17 and scared. Something I really ought to do is contact my local hospital and offer that service. Good ideas and nice to see you blogging!
  11. Adrienne

    Walking wounded

    Feel better MaryO. I have had a lot of eye infections over the past three years: everything from pink eye to who knows what. Whatever you do, no contacts my dear. Warm, wet washcloths it sounds elementary but they really help. I feel for you HUG
  12. I love replying to myself. Anyways, hope you gals come over here cause I wanted to talk more about our cats. I just didnt want people not to post who may not like cats, or who may be going through a different stage of grief. In response to quotes below: Thank you so much. This is helping me to talk about. She's never far from my mind. Course I haver her pics everywhere lol. I wanted to give you a link if you havent already bought or made a place for his ashes that is? Let me know. Im VERY happy with what I have for Shells. It has an angel cat on top and everything. I have a blog entry in here somewhere about it. Oh thank you Everyone said what a pretty kitty she was. I got her when i was in england for four months in 2002. She was a midget. She was very small and the steroids made her fat just like her momma! Lol. She had the GREENEST eyes that were very startling. Awww Angel sounds so cute! Mine are always strays too of course huh? You should put some photos in the gallery so i can see Im so glad they give tranquilizers now. My cat got better treatment than I have medically speaking. I'm glad for it. HUGS Hey Adrienne, THANKS so much for your kind words! I am so sorry about your precious Shelli. Your Shelli left this earth almost exactly a month after my baby. He passed away on April 30, 2005....I have a little memorial set up for him. I received his ashes and going to be doing something special for him to rest in. By the way, I saw the pics of your memorial on the gallery, how beautiful and Shelli is stunning, she looks a little like one of my kitties that I have, Starr, the little princess, who cries for Puffy, he was like a father to her. I got her and her brother when Puffy was the only cat and they took right to him. Puffy used to get mad sometimes cause they always wanted to snuggle with him and kiss him and follow him around and he wasn't used to that. He was also used to being the only one! But he gave in to their affections, but still got annoyed somtimes. ha ha...It is so cute watching how they interact when there is more than one. I also have my other baby called Angel who I found outside my home almost four years ago as a kitten, almost starved to death. He is so beautiful and healthy now. All mine were strays and I just love them to death. They are my children, cause I don't think regular kids are in the cards for me.... They are such miracles and they are always there for you no matter what. Oh, yeah, they gave my Puffy a tranquilizer too and we were allowed to stay with him for awhile but I just couldn't leave him...I was so mixed up about what to to- stay or go....but I guess I am happy I was there in the end, but still it is a very hard thing emotionally to have to decide. May your precious Shelli rest in peace. So glad you got some new kitties to give a home to!
  13. Adrienne

    Battling the headaches

    HUGS to you both. They should at least try Maxalt or Imitrex ya never know
  14. Adrienne

    Survey Says

    Yeah MaryO it would be good maybe the lighten up board or misc or erm somewheres.
  15. Adrienne

    Survey Says

    Nor was i notified they were here at all. I had to go and approve them all. That's new didnt used to be that way! WAAAHHHHH
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