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Found 19 results

  1. 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. Guest

    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 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
  3. Guest

    Update Again and Christmas

    My ?me? time is pretty good. I write a lot mostly. And read a ton. Online and in books. I splurge on my internet for cable access and group memberships that I really enjoy. It allows me to be social without talking physically, which is stressful to me. I get too excited and happy! But writing causes no stress for me, unless it?s fiction that seems to be hella stressful because I am not so confident with it. So I am not pushing myself. Reading is such a pleasure for me. It really is. But, anyways, I have a lot of cable channels and a DVR recorder so I can record my favorite shows and relax and watch them when I want to. I love ice skating and enjoy watching that. ?House,? ?Gray?s Anatomy,? ?Ghost Whisperer,? and some reality shows I enjoy a lot. I GREATLY enjoy my kids, my three cats. They really make life worth living! They are wonderful and comforting. So, here?s good news and an update to my last pity party post:1. Insurance company called to go over my health with me. The nurse asked for information, I gave it to her. She was really sorry she asked lol. Not really. Asked if there were any specialists I need to get to? I said I had a ton. I talked to her about my pain and the insurance not paying for a pain mgmt specialist she agreed I could use it. Said it is lacking in the plan and she would be VERY happy to discuss PAID options with my doctor. I love Oregon! I gave my doctor her name and number.2. My doctor realizes my pain. I said I didn?t appreciate feeling like I had to constantly defend my pain and I am not going to be in less pain, but more so I needed something stronger. She prescribed me Methadone. It is fairly new in using for pain management. They use it for cancer patients etc. It is strong yes. However, so is my pain. It really is. It has a longer life than morphine and less side effects. I need just half a pill more a day and I think I will be managed. I am not out of pain, it is a narcotic and tricks my brain into not realizing the pain. I am sleeping the whole night through! Each day, about 12 hours of blessed sleep. I am not waking up in excruciating pain. It still hurts, but it?s managed now. This is a long term solution and patients are said NOT to need many dosage increases with methadone. It is covered by my insurance too and is very cheap if I ever lose it again. It is also extremely constipating like the oxycodone was for me, so I need that with my extreme horrific diarrhea. I don?t have it anymore! 10 years and finally no being chained to the toilet. I am so happy. 3. My insurance lady said no problem with swimming! I have to go to a physical therapist though, can?t just swim alone being so ill and injured and they will pay for it. I am in such a small town, that I get to go to a posh club with a heated salt water therapy pool. I bought a swimsuit in size HUGE from ebay and its sooo cute even if I look like a stuffed sausage in it I don?t care. I can?t afford to care! I want to feel better. I will NOT overdo it. My physical therapist will probably just have me walk in the water for a while. This is the only approved exercise I can do because it is not weight bearing, for my hips and back. 4. My doctor said I can get the stop smoking drug ?Zyban? by signing up for a telephone support group that is free! I have signed up. I will be getting that drug and stop smoking. It is a year long program so there is no real pressure to quit without relapse, which takes a lot of pressure off of me. Think Is I hate the health problems with smoking, and the smell, but I like smoking. It will be hard to quit. But I am going to give it my all!5. Doctor asked if I was better on the upped steroids. I said oh yes. She said she could tell. She has doubts that I can get safely below 20mgs prednisone, ever. I told her to have faith ;)6. My insulin is not doing great. I am really a diabetic now! I can tell from this post that I was in denial still. Sugars are not being well regulated with injections, so they will be upping my dosage. My diet is pretty healthy.7. My mom made an appt with a dentist that will take payments! Next week. So she is helping me. Thank god. It?s going to be years of work and money to fix me, but she told him how much it meant to me and that it?s Cushing?s fault and he is very nice and says he can help me and take payments. I love my mommy. I am nervous about it. I think I?ll end up with some dentures. We shall see. At least partials. To be able to eat without pain would be nice!8. My attorney is feeling good about getting that social security appeals denial overturned. I think it will be. The evidence is overwhelming. What will piss me off is them treating all this as new evidence, and therefore having nothing be retroactive as it should be. Might have to wait 25 months for any medicare benefits! Ugh. But after five years I will be happy to have it over with. Waiting on a report from the orthopedic surgeon.So as you can see, there are some silver linings! I have had some great people call me and talk to me. I am now tucking in a bit for a rest. This methadone makes all the difference. I don?t have side effects except for extreme tiredness and I like that cause my sleep debt it huge! I feel more relaxed too, less tense. Not as anxious with that cortisol rush feeling. I just really am grateful. On Christmas day, there is over 6 hours of ice skating scheduled! So my mom and I will be visiting I will be at her house and play with the cats and watch skating while she cooks a bird for two. I?m actually quite looking forward to it. I still need to see my new endo UGH on January 10. We?ll see if I cant get to the bottom of my multiple ovarian cysts as that could be contributing to my symptoms and such.
  4. Guest

    Needles

    So it's been so busy. I've had more tests, diagnoses, and appointments in two months than ever.Dexa bone scan shows early bone loss but nothing much. Yay!Back needs surgery.Hips need replacing, once they break.Formally have diabetes type II AND insulin resistance. Started injections at home today. Feeling weak and tired from it. Needles don't hurt! I can only use my thighs and not my stomach as the straie are so bad. I swear, why didn't they put me on insulin years ago huh it DOESNT hurt. Keeping track of foods and blood tests and all that is hard but the needles pffft they hurt LESS than a blood finger test!Totally dead adrenal. Expected to stay adrenal insufficient and on some steroids forever.Was ordered to go up 1mg on prednisone; back to 20mgs. Was wayyy confused and heading for crises. Didn't even really know it. That's about it. The short of it!
  5. Guest

    New MRI Results Uh OH

    Now I will discuss the MRI results some more I guess. [goes to look for her glasses] [finds em]So, basically once my attorney knew of the new MRIS being done by the state disability office, cause they called her to tell her cause they LIKE me and want me to have Social Security disability, she sent a letter on to the judge. She expected the denial to be overturned in lieu of the new evidence. However, it was not and no response was received. How odd she said. So, now I have to get my doctor and nurse onboard with letters stating my disability due to just the new results, which is the back and hips. I have NOT yet been to a specialist so will need to see an orthopedic surgeon to know what's what in the stages of the hips disease, and exactly what I can do for my back. But, as it stands I have:Both hips have dead bone due to descresed blood flow and will need replacing.Three bad discs in my very low back. One is severe. Probably needs a spinal fusion of a metal rod placed and the bulging discs fixed. Not sure. So, those are considered permanent disabilities at least the hips are. Dunno. The attorney, Heather, thinks we can win. I did let her know I wasn't happy with her non-performance at the hearing. She went so far as to say she would beg me to let her appeal the decision. So I guess she's pretty pissed we didn't win it but truthfully, we don't see eye to eye on what a presentation of facts in the case is. Lol. Anyways, I don't have the stamina to go find another attorney. Thing is, she understands the medical info. She's just meek in my opinion. Nice lady but you don't need meek in the courtroom!So, again she wants me to get specific letters from my doctor. She said to let my nurse write it, as he understands it and me well and will probably be willing, and let the internist at his office sign it. I dunno. We don't have to go to court again this is all paperwork now. I am going to request an appointment to discuss it with him. I feel bad but he will know how important this is to me. It means in two years if approved I will be able to use medicare to help pay for some of my medical. And it's tax free and it complies with my private disability insurance company- that's why i applied to begin with, as they can be reimbursed for some of the money they give me through social security. It's almost more than I can do to do this. It's just so stressful. It is. And my health is NOT improving it is worsening with all these appointments. My simple life isn't so simple when I have to go somewhere all the time. Ah well. I am happy for the financial help.So, talk about vindicated with my back. This is the first time it has shown anyting via xray, and the first time MRIs were even taken. So I am happy about that. No wonder I'm in such pain yada yada. Bones are something not even social security can question, unlike Cushings. Ridiculous but there ya have it.Oh, on the MRI report it was noted that I have multiple cysts on my ovaries, largest being on the left at 4.3cm. So, guess what that means? PCOS. Polycystic Ovarian Syndrome. Which is something that mimics the symptoms of cushings. So, I may have PCOS which puts out cortisol and hormones messing with the steroids. SO, if I do... and i get a hysterectomy, then maybe I will be able to get off steroids that much sooner. This is a big breakthrough as to why I am so much worse than others on steroids. I don't need it btw- have my tubes tied for many years I DO get a lot of pain in the region too. So, this is good. This is really really good. I get to go see an othropedic surgeon, and a Gynocologist. Oh boysies. How in the WORLD i would live through surgery is beyond me though. ONe day at a time I guess we shall see. I will NOT be getting hip replacements being this sick. I wouldn't make it I would get infections I couldnt fight in my current state. One day though.Veddy interesting. SWITCHFeeling kinda crappy. Sugars are wild, had some troubles with high blood pressure and headaches but think that is better. Sugars giving me headaches too I guess. Afraid to eat much. Turkey dinner is being kind to me though and for that I am thankful! Not eating much sweets etc. No sodas. Just water and coffee So ummm taking a lot of oxycodone for pain. Back is just raging and so is one hip so I decided why fight it and am trying to take enough meds to get through this. I have to write my story. Oh I hate deadlines! I want to take all year to write it but have to submit it on Dec 3 For class. Hopefully I will make it. So I may be around, but not really you know? If anyone can help me with info on PCOS, please do. I need all the help I can get. I don't know if anyone without a tumor has had it here. Being steroid induced cushings, that is. What impact that may have. I am going to start searching the site for info on it. Good luck to me lolTHE FACTS OF MRI REPORT EXPPLAINED:Of the back problems. I am trying to wake up so did this. Weird way of waking up huh? You can see why its so painful, its in an area of flexation. Curved. And the L = Lumbar. The S = Sacral which is the endOf the vertebrae. Above the Lumbar region is Cervical, which is what my mom has. Yup. Trying to find a picture of the whole spine to compare?Found a bunch. I will put two in my album here. You can see in one why sitting takes pressure OFF the area and supports it, whereas lying down hurts it.Anyways. A bunch of stuff. At least I understand. SO that?s:[1]. L3-4 Dessication of disc [??? Have to look that up]; Minimal posterior bulge, no impingement or stenosis; Lumbar Spondylosis, Mild; Mild Disc bulge[2]. L4-5 Moderate narrowing of disc; Mild anterior osteophytes (Bone spurs) on L4-5; Mild posterior bulge; Mild ligamentum flavum thickening; Lumbar Spondylosis, severe; no definite impingement or stenosis (he thinks it is causing my thigh numbness and pain though)[3]. L5-S1 Minimal narrowing of disc; Mild midline disc protrusion barely touches the thecal sac; No impingement or stenosis; Lumbar spondylosis, mildAND THE HIPS FACTS:MRI Technologist (Doctor) Report:RIGHT HIP:Ring-like peripheral low-signal, 2.8cm transverse X 3.4cm AP, subchondral weight-bearing femoral head; no fluid filled cleft; no fragmentation; no collapse; no definite joint narrowing.LEFT HIP:Ring-like peripheral low-signal, 2.5cm transverse X 2.1cm AP, subchondral weight-bearing femoral head; No collapse, fragmentation, cleft or joint narrowing.IMPRESSION:Avascular necrosis both femoral heads, described in detail above. No fluid filled cleft, fragmentation, collapse or secondary osteoarthritisThree years ago the results were approximately: 1.0cm Right hip; 1.5cm left hip. So there. Now I have dissected this :DIM IN MOURNING
  6. Guest

    Drugged UP

    I did it. I made an appointment with a pain management doctor/specialist. It is for 12/5- cause i get paid on the 1st. Merry Christmas to me. It will be as much as $250.00 This is good. I am investing in myself, in my quality of life. So yes, the reason I am so chatty is because my doc just gave me a new schedule II narcotic. Straight Oxycontin. No acetaminophen filler, no nothing else. It is double the strength of percocet and its cheap. 33.00 for a month thats cheap. So I guess i am feeling a bit high But oh man it could NOT have come at a better time. I so so so need a break from pain. We shall see if i can get used to it so far as taking it long term. I actually hate the feeling of narcotics. I dont like to lose control. Dont like to drink, dont like anything like that. But, after 27 years of chronic pain, I am ready to admit that I need it. My doc says this specialist might suggest a combination of drugs to control my pain long term. So it isnt just one drug, etc. But I do hear and my research suggests that the Methadone my doc thinks I will do well on will allow me a better quality of life. They say it is less of a high feeling. I hope so. People tend to really look at ya funny when youre high The main pain factor is my back. A neurologist pressed on what he calls trigger points in my back in May. The pain was never ever this bad before he touched it! Anyways. MRIs were done but results not in yet. Safe to say nerves are trapped as my thigh is numb. I admit, I will be surprised if it is NOT a slipped or degenerative disk. The pain is just unrelenting. The only position that doesnt make it worse is sitting. I found a Fibromyalgia and Chronic Fatigue Sufferers support group. My neighbor, Jamie, has an injured back and she is not able to work and is pregnant. So she has agreed to go to the meetings with me! There are no cushings groups here. Pretty small town and only two cushies total in my area, Sherri, the other cushie who lives here, told me about it. I figured fibromyalgia pain is one of the WORST possible so even if i dont have it, or only some trigger points, and my neighbor not at all, that at least we can get in a group of people who understand pain. Proactive. Trying to embrace my life.I created a new board. It's from EXboards. I think MaryO used to be on them, us here. Not sure. Don't really have any members yet and it's got topics to post on medical, writing, hobbies. Anything you want really. It's fair to say I like to talk, but since I have been focusing more on myself and am seeing good results, I guess I'll never really be as active here as I once was. It is just too stressful I suppose. Hard to admit. I like to help. I also kind of lost my memory with some things. I don't understand other types of cushings as well as I once did. I find that my symptoms and particular situation with steroids is kind of unique. Just doing what I can to fill the hours with friends and other things. Still havent started painting yet, but its all part of the plan to chill. :DOh. The link is: http://p101.ezboard.com/bcoffeestainsI do believe you have to register with EZboards to access it, but you might be able to view it. Anyways, would be happy to talk to peeps if you feel like something different. Im not all into advertisting but i like learning new things and metting people in a smaller environment. The second batch of cushie dolls went out last week
  7. Guest

    Three Appointments In

    So, a recap a bit. Mr. Fogg is my Family Nurse Practioner- FNP- and they have a lot of rights in Oregon. Can write prescriptions, they do a lot. I saw him two years ago for about 6 - 9 months and he changed all my meds to help my kidney pain. The NSAIDS- non steroidal anti-inflammatory- medications were causing some pain in it. He did a lot. I found him again a couple months ago, and my first appt about 3 weeks ago I see him once a week.He opened his own practice. It is about 8 miles down the road and it's SUCH a beautiful drive I enjoy it a lot. It's the area mom and I want to move to but is considered pretty expensive. All private land and homes; no cookie cutter houses. Country-ish. The fall leaves... well it's the reason we just love Oregon. We're trying to not move from the area now. ONE DAY there will be some affordable land but with all the medical bills my mom has paid for me [mostly meds] her credit cards are up and there is no cash. ANYWAYS. We no longer will move from the area, at least I wont, as I have a medical team I trust. He opened his practice in a separate building here. No big major medical center I go to the hospital for extensive labs. He has a lab inside the building! And two doctors- one is an Internist, the other a general practioner. They are both women. Dr. Fahey is the internist. He has a WONDERFUL staff who all know me now by name and well I cannot say how wonderful this is. And I don't have to pay anymore... Because I got insurance. We hugged three times our first meeting. He is so happy to be treating me. Frankly, I think he's just happy I'm alive sometimes it has been iffy. He said I have done a great job getting down to 19mgs prednisone from 30mgs last time I saw him. Without doctors. Anyways, he is about 60 or so [an ageless soul kinda hard to tell!] and is also the local fire chief. Isn't that cute? He smiles a lot and it makes me feel good. He has many degrees, most notably in chemistry. For a picture of him go to his site: www.avfm-or.com/np/fogg.htmlHis attitude keeps mine up. He said I'm going to be okay. I am going to get off these steroids. We're going to 'chip away' at my symptoms and he always gives me hope. He listens. He responds appropriately. No appointment has taken less than an hour. My first took two hours. No interruptions. Anyways. He wants me to see a pain management doctor. My insurance doesnt cover it so I said no way, maybe in January. This week I revised it to next payday I need help! Codiene 3's don't help the back pain much. He gave me percocets last week but it was over 2.00 per pill so that isn't going to work my insurance pays zero for narcotics. He wants me to try methadone. It is NOT just a drug for drug addicts! I checked it out. They say you can have a better quality of life on it. Helps the pain by constantly releasing a narcotic. It is long term use only. Withdrawl if not taken on time. BUT IT IS CHEAP. Real cheap. However, for him to prescribe it is frowned upon so he wants me to see the pain doctor. I have never seen one. And get this...He said he has no doubt I am in serious pain. He said he does not worry about me overdosing and dying- I am not a suicide risk. Do you know how wonderful that is to hear? I'd marry him if he wasnt already married ha ha ha. Kidding! So, I will see her next month as I get paid on the first. I will have to not pay my cable bill or sth to pay for it. My mom is broke. Cannot do it have to do it myself. No idea yet on the estimate... but Stanley, his admin, is working on it and will let me know.What else. Well, he did the major blood tests. My cholesterol is over 500. My good cholesterol is low. It's scary as my father died last year of clogged arteries. It runs in BOTH my mom and dad's side my mom also has very high cholesterol. Cushings means I cannot break down fats at all, so it's normal but it's still scary. Hasn't a thing to do with what I eat. So I am now on liptor which will help. My blood pressure was low, then normal. Narcotics make it low. Also the cushings makes it high but the drug I am on works whereas nothing else has past 6 years or more. But it isnt covered under the plan and is 220.00 for a 90 day supply. So, another drug to try and push through my insurance as it is a kidney saver drug and the others arent they are harmful. If not, will have no choice but to change. Umm. I have hives again. Too long to go into but it means the lowered steroids are making themselves known. I got atarax for itching but havent taken it yet. Right now, they and the eczema on my face and neck arent too noticeable. I hope I do not look like a freak again but if I do, so be it. That's just the way it is. I have had serious, almost-coma incidents with blood sugar. Extreme highs, extreme lows. My tests came back positive this time. I have Type II diabetes officially now, and am insulin resistent. This is the first time we've been able to catch it on tests every time. I start the drug 'Actos' as soon as the insurance approves it as it is very expensive. This will normalize my sugars so I can continue to go down on the steroids. Right now, he said no way. Bummer that. I still am getting a cortisol reading in my urine. Have to pee in a jug for 24 hours. Fun. The lab gave me one without a preservative so I told him no way i aint doing it again cause of that lol. So I just have to pick up another jug and tell them they're dorks for forgetting it :PI am at 19mgs steroids. When I get to 10mgs or so, we will check to see if my adrenal works at all. That is a milestone- I can't wait. If not, then I will always need steroids. We shall see.Oh. My Mr. Fogg wants me to see his internist, Dr. Fahey. She will take over my care. He said he is a nurse and is NOT handed me off; he will still see me once a month, per my request. He said I deserve the best care possible and she knows more than him. He has discussed my case extensively with her. He said sorry if it makes it sound like I am under a mircoscope but nope I don't mind. Only 2 people in 100,000 people get cushings. I am still considered a medical mystery. Not that I have cushings so much as why i STILL have it and my sensitivity to the prednisone etc. Smoking. He has heard my pleas for help. I start wellbutrin as soon as the insurance co approves it. The nurse case manager called me the other day wants to talk to me. Hasnt called me back phone tag. Probably want to know more about cushings. I am used to it I guess.I am worried about the wellbutrin. I know it will work I had it once before for depression but it made me a little crazy and I stopped it. My meds were much different then though, and I am more stable mentally now. My mom is all worried. But I am willing to do almost anything to stop smoking. It is nasty and expensive and it is embarassing to say just how addicted I am. I am telling you. I am feeling like a miracle woman sometimes that I can go through so much. My back... gosh. I slept for nine hours today and woke up with it on fire. It has taken three hours to get under control. Anyways, my MRIs will be evaluated by Dr. Fahey. I don't know if it's slipped disk/s, osteoporosis [i have a bone density scan on 11/22], or myofasical pain syndrome brought on by the neurologist in may who pressed hard on it. Whatever it is, it's affecting my quality of life thus the pain management need. My mom doesnt want me on type II narcotics. Worries. She deals with her disk pain but I cannot. I am too fat; there is too much pressure on the area. And... my thigh is numb 50% of the time. So there are definitely pinched nerves. I will not be able to have surgery no matter what, so pain management is the key. I am never NOT in pain it is just degrees of pain. So no, I don't expect ya all to read this whole thing lol. Just know it is my way of keeping a diary of sorts. Love ya guys!
  8. Guest

    GREAT NEWS

    I just returned from my doctor's appointment. I am absolutely exhausted. I spent a long time preparing my notes and meds and addresses and everything last night. I still have a mirgaine so could be just no sleep but taking my Midrin for migraines and got a few more too.Perfect example of what weird things my cushings syndrome does to me. I was SO EXCITED to be going today. Oh my GOSH I didnt have to pay! I got to see my favorite nurse in his OWN practice complete with a lab onsite and two doctors there and a HUGE staff. He's the boss but he isn't a doctor although he has a doctorate and masters in chemistry I think. He was a paramedic, then nurse and also a volunteer fire chief. Small towns are odd But what i am saying is, in oregon a nurse has almost all the privileges of a doctor and he knows more about me than any dr ive ever seen.I hadnt seen him in a year and a half and he remembered everything about me. We hugged. It was like seeing a long lost friend. I was so broken hearted when he left his old practice but it wasnt his and the doctor he worked for was such a chump. Horrible. We had a quick laugh about him but he let me know without saying so that he doesnt want any records from that place. Incompetent boob that dr was. Anwyays. I was with him for 1.75 hours. That's a long time and both of us talking a mile a minute. He knows drugs realllly well and so do I so we were almost chatting like friends. Most of my care centers around medicines so it's good. Then we hugged again. And again before I left lol. He's like this big teddy bear and he cares. To have a doctor taking care of me... I am not used to it. Used to taking care of myself.Guess what? He said we have so much catching up to do and tests to order and specialists to see and meds to monitor that he wants to see me EVERY WEEK. I have never had a doc say that! And it's paid for. OH GOSH. Im so excited anyways, that my cortisol is up, my blood pressure is low [he's worried about that we will have to change meds it's a long story] and I am insomniac for a while longer. Then I will crash. So, my cortisol is telling my pitiuitary gland HEY SHES UNDER STRESS ASK THE ADRENAL FOR MORE CORTISOL only my adrenal doesnt work so it doesnt. So my body thinks im under like huge stress, but really I am happy. See why it's hard to be happy? Big reason the phone is hard for me etc. is not because of the bad stuff, but because I am at heart social and enjoy talking to people and friends and well again, my body is like DUDE STOP THIS WE CANT TAKE IT. And im thinking YIPEEEEE.So, this one appointment will keep me off the phone, no visitors, no going out, for at least three days. Next week I get to do it again but it wont be so exciting I hope. The office is so cute it's in the woods. I love Oregon. A scenic route! And I had to go to the hospital for some labs usually wont tho. He agrees there's something wrong with my eyes. Mirgaine is tied in there I THINK. We're sending me off to a real eye doctor- I mean a real one ya know? I hope it's not infection or sth serious but this pain, vision loss and sensitivity to bright colors is worrisome. GOT A CALL and my appt is for Friday. For the eyes. Talk about quick!Gonna get that colonoscopy finally but will wait for a bit for some more normal test results first. He said he knows a place that will put me OUT with an IV. So I said let's do it. Then maybe get a diagnoses for one of my worst problems and meds. And ah what else? Getting my MRI films to see whats wrong with my back and check on the dead hip bones. Knows a lady who does pain management but my insurance may not pay for it which is a no go no money. He said we can try methadone? Like morphine for home use. I dont want to do that but i dont want to be in constant pain either. Unless something is wrong with my back that will threaten my ability to walk, [because my thigh IS numb] I cannot have any surgeries with cushings. It would really be dangerous. So pain management is the key for now. I told him percocet well id rather be on that with the codeine than methadone. I dont like morphine. We shall see what the MRIS show and how much pain i can take. And my insurance doesnt cover codeine i think or percoet but the generics are cheap. I will also have to pay for one drug because the insurance doesnt.Oh and I told him I had to lie to get insurance. He gave me a thumbs up. Hard to imagine being such a mess that no PAID insurance will cover me but it is so. So if my disability private insurance company needs their forms filled out, he will do it and NOT put it in my chart. I told him this was the last resort i was almost ready to give up and all options had been exhausted. He said ive done a fine job of being my own doctor now he will take over for me. What a relief. It's not like I enjoy doing all this myself. Ordering drugs from the internet etc. God was really looking out for me today and lately so much so with finding Fogg [my doc] again. And it was all seemingly by chance yet it wasnt- providence I tell ya. So im kinda in a physical crises right now, but mentally I sure feel good. Will rest a lot and take it easy. Ummmm I guess I talked myself out. Im still excited i feel like shouting DOWN BOY DOWN. I am such a fighter you know. I fight for so much. But it's days like these that I'm glad. Oh. And Fogg is going to help me stop smoking. I had to admit I was really addicted and needed help. Embarassing to say the least. Im not usually addicted to anything. Never alcohol or even pain drugs but smoking... yikes. We're thinking of ways to handle it. Patch if the insruance covers it, but he really wants me on pills. Only i had a reaction to the wellbutrin last time but i didnt smoke when i was taking it. It totally eradicates the whole habit. We will work on it.May everyone's day be as blessed as mine has been You all are very special. Thanks for letting me drone on and on. Now if I forget a detail I can look here for it. And if i dont remember it or write it down eeks Oh and no, I dont think I will be going to see an endo here. I have never ever had one help me. This nurse and his practice I trust and that doesnt come easy. He didnt even mention seeing an endo. We'll shoot me around to specialists but not an endo. Anything he doesnt know, he looks up. And he has a friend who is an endo and he will call them if needed. He's the smartest doctor ive ever seen who isnt even a doctor doctor but a nurse! That is time tested. And having a lab onsite, and all that well its just so nice. I told my mom I dont wanna move now from Oregon. from the area. I want to stick with him and get myself well that's for sure. Oh and he did say when we get down to 10mgs prednisone he will put me on an inhaler of steroids so i get it in my lungs, which was the problem to begin with and even tho they dont bother me much now, they will as the steroids go down. PRETTY darned smart. Soon, a year or so? I should be able to get my adrenal gland tested. That will be cool. See if after 11 years it wants to work!
  9. Guest

    I GOT INSURANCE!

    MY BIO IS NOW CURRENT ON THE SITE.UPDATE 10/6/05:I have received a very basic health plan insurance through my state. It covers appointments and medications which is more than I?ve had these last three years, so I am happy. I do not know that it really covers hospitalization or many tests, but we shall see. When I was at the urgent care for pneumonia last week, the doctor there told me where the nurse that I love is now practicing. He helped me get off a lot of medications that were hurting my kidney and since, I have been had fewer infections and almost no kidney pain. He quit his old practice I was seen at about one and a half years ago; I was never able to find him again.Anyways, he opened up his own medical clinic complete with internist, and two other doctors. So, I called my disability worker and she told me to ask what plan the practice takes. So I called my nurse?s office and left a message to see what plan he accepts, and he called me RIGHT back. He was SO excited to hear from me. He said he's been putting ads in the local newspapers in hopes I would find him (and other patients of his, of course). Knows the doctor I saw that gave me his card. He would love to treat me. Told me to ask for the 'family care' plan so I called my disability worker back and I?m all setup (they just have to do the paperwork)!!! I made an appointment with my beloved nurse for 10/25/05. I cannot believe I get to go to a doctor and have meds again for nothing! Well, some are 3.00 and others are 2.00. And he knows Cushing?s of course and he looks forward to treating me. How? wonderful a feeling that is to hear. He is a nurse by choice; the practice is his. He has over 25 years in the medical field; we talk medications like two old friends. I?m so happy!I change names often, so I will just update this as I can. My current website address link is:http://allpoetry.com/poets/Fix%20it%20FaeI write there. Some funny, most sad. Lurkers welcome lol.
  10. Guest

    What I been up to

    Gee I let this blog go. I had a cold. The it became strep throat. Then sinus infection and bronchitis. Now I got pnemonia. Safe to say I am very infected!I got some sort of medical insurance. I am happy about it. But it isnt much and I had to lie to get it. I dont know much about it. But at least doctors visits and meds will be paid for. That's... amazing. Im just in shock.Yesterday marked one year that my dad died. So I wrote something for him. Maybe i'll post it. A bit dramatic but that's me. Just... sleepless with cold meds. Obviously not feeling well. I got sick cause i went down on the steroids again. 19mgs prednisone down from 30mgs last year. Yes! Couldnt get into chat this week. Whats up with that. I tried and tried Missing ya all. Got cushie addys for dolls so now I can send them. My mom will pick them up and mail them for me in a couple days when she comes. I cant go anywhere. September 30, 2005 Dear Dad, I spoke to you, a year ago today. Not with words, but mind-thoughts: Were you happy? Can it be that you were at last free from pain? Did you get to see old Harry again? It took me all day but I finally could say, Dad, did you know how much I loved you? I didn?t really expect a reply, and so I wasn?t all that disappointed when I received none. Still, my questions continued. Was it okay that we didn't spend more time together? Would you now know the answers you had searched for all your life? Did the mysteries of the world reveal themselves to you? Was there a magical moment of eternal epiphany, or were you as clueless up there as we are below the heavens? Were you greeted by your favorite uncle, Charlie? Did my zoo flock to you and greet you as I had hoped? Would your widow be best kept in your home? Ah dad, when the time came, did you understand how much your writings meant to me? That your creativity gave permission to my own artistic expression? When I spoke at your service, was it really you who smiled upon me in spirit? Did you not urge me to speak past the void you'd left in my life? Did you realize how ashamed I was that I nearly had to stifle my hysterical laughter as I heard your voice in my head? Some children never know love from their fathers; death and physical and emotional separation often interferes. Yet, I knew you. I knew you as a father, and as a man. I knew you as a person I admired. Never without fault, but- I knew you. Do you know now why I loved you? Because you didn?t, then, not while you were alive; couldn?t see what you meant to me. Of five children given to you, three to share, only one, perhaps two, recognized your worth. And really, how crass of me to speak of it. Only? I just don?t understand how I am left to mourn you in private. Your widow has her own pain and cannot take on mine. My mother, your ex-wife of many, many years, she still cannot comprehend that you are gone. The others? well, whatever. But of the two daughters, born of your flesh, why am I alone in my mourning? Of course, you never understood her and God knows, I do not either; in fact, to attempt to do so would be a catastrophic event that I fear would shake the foundation of my spirituality and life as I know it would cease to exist. Well, something like that, at least. What a shame. What a damned shame, dad. I?m sorry she hurt you so. As I?ve said already and at the extreme risk of repeating myself, I knew you. The words keep repeating in my head, a refrain that never stops when I think of you: I knew you, I knew you, I knew you! Your worth. Your loving ways. Your big-gentle-bear-ness. And this day marks the one year anniversary of your death. One year that I?ve been speaking to you, wondering if you really can hear me. Asking you if you know the answers to the questions that life brings; even those that death comprehends. You might say that we are separated now by life- my life- for surely death is as omniscient in reality as it remains in my mind. No, death presents no barrier between us, really. It is my life only that separates us now. But, all things in time will come to me, and one day- one day, dad- you?ll be able to answer my questions, face to face. And until I die, I?m content enough to wait. But I?ll continue to talk to you, without words (like this), because every girl needs her daddy. And because? death has not cheapened your worth, to me, at all. Love, XXXX
  11. Guest

    Waaaah

    I want insurance
  12. Guest

    Help

    I dunno where to ask this. I cant pick a board.Im dizzy! Im so dizzy! Its like vertigo. No nausea. Appetite increase which is odd usually its normal. Same amount of steroids 21mgs prednisone. BUt the room is tilting like this see?Worse when i lie down or move my head. I stopped my high Blood pressure meds thought it might be low. Is this is any way a sign of crises? I havent ever had it before. Its just so odd. 4 days now!And no, i dont have a doctor. No, i cant see one for sth as piddly as this. I would if i could.Anyways. Sorry just... confused
  13. Guest

    Off the patch

    of fentanyl; hope i dont have to use that again. It works as well actually better than most, but man was i drugged. today im dizzy; like head between my knees dizzy. i think sleeping so long [24hours!!!] might have lowered my blood pressure too much so with the strong meds for that it was too low. i dunno. really i dont. how rare to sleep so much and how lovely. oh i wrote sth, trying to understand how to get back in suck it up mode:When I was in labor, sixteen years ago this August 25, I had an interesting thing happen to me. It was twenty-six hours of agony; torture indeed. There were no chirping birds or lovey-dovey feelings; well not until the end result was in my arms (what a cutie). Although I was in agony, I refused to cry out loud from pain for over twenty hours. I felt it was counterproductive.The walls were thin in the labor ward; either that, or the other women really had great lung capacity for screaming. I mean to listen to it made me so enraged; why couldn't they bite on a stick? I was busy concentrating on breathing and not crying out loud. I wasn't very interested in being understanding. I was sixteen, scared as I can be, and ready to kill my future husband. Yes, I would have married the sod when I found out I was pregnant if my mother would have signed off on it. Instead, I waited until I was eighteen, which I very much regret.Anyways, my husband was great; bringing me ice, smuggling in Life Savers (any idea how awful it is to not be given anything from the nurses for so long?) But after twenty hours, he kind of lost it. "Why don't you just scream? Why are you so silent? Why don't you squeeze my hand until it hurts me? Why must you ALWAYS be so quiet?" I had been through a lot of physical pain from a diseased kidney in the time we were together, so I guess he had an inkling of how I dealt with pain.But his questioning of why I didn't scream out loud while in labor made me question myself: Why didn't I just let loose? Wouldn't it feel better? And so I did. He was happy. I was not. I lost control then, from the pain, no longer having any power over it, as I did when I was silent.Today, I do the same thing. I am silent for so long; but then someone comes along and unlocks my voice. Then there's an outpouring of anger, sadness and pain unlike anything they've ever seen. I think. And to what purpose does it serve? When someone asks, 'How are you today?' why do I not just lie now, as I once did so often? What purpose does it really serve to be vocally miserable?And I find myself wishing to be so silent again. Ignore it and it might go away. Right? I'm tired of hearing myself complain about pain. Of course, it isn't always so bad either. Normal pain is pretty tolerable, and I'm so used to it. It's the persistence of said pain that really breaks a person into half of who they once were. And I find there is no pill, no patch, available to alleviate it all. Bummer that.But to stop writing about it? I don't think I can. Writing for me is mostly sad anyway; the happy parts of my life (family, love and friendships) are never adequately portrayed in writing. Perhaps I should work on that. Yeah. Lessons of the past do tend to visit me. I wonder if they're as counterproductive as crying out in pain? Well, I am my own worst hobby.
  14. Guest

    Ugh

    What a day. I need to get an address for Jinxie for the hug a cushie doll. I havent been posting cause I'm on Fentanyl patch. I didn't want ot depress anyone but ah it's still not taking the pain away. My back. This pain is wearing me down big time. It isn't that it's 10 on a scale of 1-10; cause you know, I think someone having their legs blown off is a 10. Most I've had is a 9 in my life which is writhing on the floor moaning and wishing I were dead pain from my kidney. ANYWAYS it's about a 5 but it's nearly constant there is no break. I need shots but cannot afford them. I'm going to next month though even if I don't pay a bill or two forget this. This is survival. I went visiting to my neighbors tonight that was nice. Made me get up and out a bit. Hurt to sit on the couch more than my office chair but it was hilarious. She's funny. And she made cookies and her son who is only about 10 months loves me which is hella funny; why kids love me is beyond me. Might be all the funny smiles I give him. MY GOD I've become such a recluse. :ph34r: I noticed that many of other cushies are reclusive too. It's more a matter of survival than depression though there is certainly that. I give up. People aren't going to understand this unless they go through it. I just give up on explaining it. Yet I write about cushings a lot. And I know I'm being bitchy when they don't get it right. I mean I write it for me. Right? Then why do I post it on the internet? What am I looking for? I don't know. I just feel better when I talk about an aspect of it in a poem. It's like a release. I'll include my newer ones here. Why not :)RED TAPE KILLS (A Villanelle Form Poem)I exist on self-enforced life support, but I?m not dead.Each day dutifully swallowing poisoned pills.Heart and mind- basic functions- supported in this life not fully led.Finding joy in once normal things, hopes for a life ahead.Bottled dreams death?s only antidote, my anthem is still:I exist on self-enforced life support, but I?m not dead.The world whizzes past me, medicated.So weakened, even fun is exhausting. Pain alone enough to feelHeart and mind- basic functions- supported in this life not fully led.Stubbornness saves me, as I will not dictate my life from Death?s bed.Good intentions rarely enough for others to see what?s painfully real-I exist on self-enforced life support, but I?m not dead.Without insurance, there?s no doctor?s guidance, no caring if I live or die. Med-students know nothing of my complexities- they simply write on my unpaid bill:Heart and mind- basic functions- supported in this life not fully led.Without my knowledge and persistence, my epitaph would read instead:Here lies Adrienne- So young, such a shame. Left behind a hill of bills. Red tape kills.I exist on self-enforced life support, but I?m not dead.Heart and mind- basic functions- supported in this life not fully led.paini can?t smile todayor write a love poemor be wittyor even bother to dotmy ?i?s?i?m floating on pain?s wavesthis life i?m living in vaintrying to escapefeeling its undertowagain helpless to resistits hopelessnessyou can?t save meunless you can take awayall this painbut of course you can?tbeat it up and ship it outlike any sane manwould itch to donor fix itbecause it isn?t a foeyou can touchand it runs away from youas much as it clingsto meto love meplease accept thatyou are as helpless to itas i amand thati do not wishon anybodyknow that if i couldi?d spare youthe realizationof my sufferingbut i?m addicted tothe comfort you canprovideand the caring that youshowjust don?t ask me tosmile through it allnot even ican ignore italways
  15. Guest

    Yup

    It helped. One more little pill. Still swollen and sleepless mostly. I feel like an overused escalator that reverses without notice. How very annoying. Missing my father today. Happy in other ways. Up and down. Odd but I think one has to do with the other. Hmmmm
  16. Guest

    Crises

    I think im having a wee adrenal crises. Yeah. so I prescribed myself 1mg prednisone. We shall see if it helps. Hey theres perks not having a dr. right. Right
  17. Guest

    Today

    I keep forgetting to write in here. I feel like shit.Yeah that about sums it up. So, I feel like Im having a crises. Fuzzy headed like soda pop bubbles are bursting in ma brain. Weak. just odd. And my blood sugars check out time after time they're ok. I'm not weaning right now still at 21mgs. My back hurts like holy hell. I mean whoa it hurts All I can say is the pain meds of codeine, hydrocodone make me feel this way. I don't know. Got that rapid pulse feeling too. Feeling a bit better. But not sharp. And I need to go to the store I need supplies! Im afraid i'll get there and be too weak and tired to shop. I slept a lot yesterday too. I should feel better damnit not worse.I need a doctor.
  18. Guest

    What's going on- SSA, etc.

    Well I had my social security appeals hearing on July 15. So I think I can finally talk about it now. I first applied oh four years ago. I had to reapply oh two years ago or has it been three? Anyways. So I had been denied on paper four times to get to the hearing. I had appeared twice before the judge: Once, I wasn't prepared and she said get an attorney. Second time, I had moved and lost my atty so then I moved back she said go get an attorney I will reschedule you. So I did. The attorney assured me she would get records that were more up to date. She did not do so. When asked if there was new information by the judge, she said no. Anyways, my diagnoses on paper are: Fibromyalgia which i don't have, Cushing's Syndrome, Avascular Necrosis of both hips from steroids. Oh and glomolumerloitis sth like that of the kidney. I don't know if I have that, but my last doctor put it down on their paperwork.So, she had an Endo on the phone to 'consult' she the judge had stated that he was only to help her understand the medical things, but that's NOT how it turned out. I have never seen him before! He knows nothing of me. Her questions were really skewed. She was looking for documentation that doesn't exist I mean COME ON I haven't had medical insurance since 2002! How the HELL am I supposed to have MRI's of the hips that are newer, xrays, all these tests do they THINK I'm made of money The endo wasnt too bad. He said obvsiouly being given a dex suppression test for 4-8 weeks [i can no longer remember!!!] it had made my cushings so severe and most of my problems could be attributed to it. He couldnt at all understand how it happened but I told him- the doctor forgot about me and told me to keep taking the dex. I didnt know any better. Then the doctor left. He said according to my records my blood pressure was under control. Well it is NOW- I was hospitalized within the past year in CA and given emergency medicine to lower it it was so out of control. How is THAT controlled? Oh but WAIT the records weren't there that documented this. Wow what a neat thing to find out. My diabetes I should be on medicine for and I could go down on the steroids quicker, accd to this doc who doesn't know me. Huh? I only GET diabetes when I go down or up! Otherwise, giving me meds would only screw with the sugars. I cannot take their ferking Glucophage it makes my IBS off the charts no way, no how I'd rather in ject insulin. I do think some injections when tapering might help but HOW I ask can i do THAT without medical supervison? I can't. I'm not God! He said I could work sedentery work. Ack ack ack! I told him of my extreme swelling but heck I guess if someone were dumb enough to hire my sorry ass then they could also give me an expensive fully padded ottoman like I have under my desk. To limit swelling. Sure, I'm an employers DREAM. But then he said I would have lifelong problems relating to the cushings and steroid use. He doesnt understand the kidney at all. The severe IBS is 'controlled' with Codeine even tho i told him nothing else works only codeine and i cannot take enough to control it really as it makes me into a zombie. Didnt listen.Said my hips while last tested in stage I [thank GOD but that was 4 years ago!] would likely progress as it usually does and I could expect lifelong operations. Like DUH ya think? But the whole problem was... the judge thought i REFUSED to go down cause... i was using steroids like an addiction. She asked the endo if anyone would use it recreationally AH HAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHe said [giggle] no. Can't think of one person EVER wanting to take steroids. And my attorney? Basically, she said nothing. NOTHING. She hugged me at the end, and said she was sorry it didnt look good. Really? Ya think? I even spoke up for myself very respectfully, but the bottom line is no one will listen to me. I'm only the patient. I didn't want their fliping money. I get a stipend until I'm 65 or no longer disabled from a private company. But NO ONE will insure me. I just wanted medical and dental. I need medical, I need dental. And I need a divorce. Erm nvm. Appeal? HA HA HA I had to laugh at my attorney. Not with her sorry ass. She's a nice lady folks but she didn't get paid unless I won. And I'm quite sure I did not. The evidence was what they wanted. I have had no doctor in my corner for two years. I have had to doctor myself. I have two new diagnoses too from a neurologist:Trigger points and myofacial pain syndrome in my lower back. It's SO killing me. I need shots BAD but the expense. I can't... nvm.And some Myalgia sth with sth in my left thigh- making it go numb. I need to find the name but basically, standing up puts pressure on a certain nerve and causes the numbness from hip to knee. My poor mom. I need money and there is none. Her credit cards run up on last year's doctors appointments and prescriptions. All i can buy are the main rxs i really need. Everything else... it just isnt going to happen. Ain't life grand? It's ok. I'll get thru this. I want to go down now but I don't want to get crazy in the head, or too exhuasted in the body before my sister comes down to visit me on 8/11. I'm looking forward to it. How does anyone get disability without records??? I guess I could try on my newly diagnosed bipolarism. [shrugs]
  19. Guest

    Social Security Appeals Hearing

    Had it today. Wasn't great. Okay well I don't really feel like re-hashing it right now. I will though.It's hot.
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