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  1. Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice… To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year. Possibly this has become a tradition. I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through. So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name! I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors. If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally. Those are listed in the right sidebar of this blog, past the Categories and before the Tags. Meanwhile… http://maryoblog.files.wordpress.com/2011/07/time-for-me-scaled500.jpg?w=314&h=283&resize=314%2C283 Choose wisely… http://cushieblog.files.wordpress.com/2012/04/maryo-colorful-zebra1.gif?resize=199%2C172
  2. People sometimes ask me how I found out I had Cushing’s Disease. Theoretically, it was easy. In practice, it was very difficult. In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…” I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”. After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it. It was too rare. I was rejected each time. Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it. In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“. So, doctors typically go for the easily diagnosed, common diseases. Just because something is rare doesn’t mean that no one gets it. We shouldn’t be dismissed because we’re too hard to diagnose. When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings. When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist. Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me. Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me. They packed me off to an endo where the process started again. My final diagnosis was in October 1987. Quite a long time to simply “…ask your doctor about Cushing’s”. Looking back, I can see Cushing’s symptoms much earlier than 1983. But, that ‘s for a different post.
  3. Over the years, we went on several Windjammer Barefoot Cruises. We liked them because they were small, casual and were fairly easy on the wallet. They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever. One trip we were supposed to go to Saba but couldn’t make port. A lot of people got off at the next port and flew home. The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip. We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride. The last trip we took with them was about two years before I started having Cushing’s problems. (You wondered how I was going to tie this together, right?) The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands, and so on. Until it was a particularly rough sea one day. I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. I fell and cracked the back of my head on the curved edge of a table in the dining area. I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine. We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all. The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on). All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize. The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier. The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras. This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects. I read this book and I was really moved by the plight of those crew members. I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
  4. This is another semi-religious post so feel free to skip it 🙂 I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn. My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years. Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on. So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago. In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery. I was terrified and sure that I wouldn’t survive the surgery. Somehow, I found a 3-cassette tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me. At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more. When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod. Abide With Me was on this original tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700. I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here. This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included. If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you. ~John 15:7 Abide With Me Words: Henry F. Lyte, 1847. Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting: This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth. Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon: O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ. For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997. Abide with me; fast falls the eventide; The darkness deepens; Lord with me abide. When other helpers fail and comforts flee, Help of the helpless, O abide with me. Swift to its close ebbs out life’s little day; Earth’s joys grow dim; its glories pass away; Change and decay in all around I see; O Thou who changest not, abide with me. Not a brief glance I beg, a passing word; But as Thou dwell’st with Thy disciples, Lord, Familiar, condescending, patient, free. Come not to sojourn, but abide with me. Come not in terrors, as the King of kings, But kind and good, with healing in Thy wings, Tears for all woes, a heart for every plea— Come, Friend of sinners, and thus bide with me. Thou on my head in early youth didst smile; And, though rebellious and perverse meanwhile, Thou hast not left me, oft as I left Thee, On to the close, O Lord, abide with me. I need Thy presence every passing hour. What but Thy grace can foil the tempter’s power? Who, like Thyself, my guide and stay can be? Through cloud and sunshine, Lord, abide with me. I fear no foe, with Thee at hand to bless; Ills have no weight, and tears no bitterness. Where is death’s sting? Where, grave, thy victory? I triumph still, if Thou abide with me. Hold Thou Thy cross before my closing eyes; Shine through the gloom and point me to the skies. Heaven’s morning breaks, and earth’s vain shadows flee; In life, in death, O Lord, abide with me. http://cushieblog.files.wordpress.com/2012/04/maryo-butterfly-script1.gif?resize=251%2C121
  5. I wrote parts of this in 2008, so all the “yesterdays” and “last weeks” are a little off. Wow. That’s about all I can say. Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 30 years ago. More than a quarter of a century of feeling exhausted, fatigued. A quarter of my life spent taking naps and sleeping. Last week in this post I wrote in part: So, yesterday I was supposed to go to a conference on web design for churches. My church sent me because they want me to spiff up their site and make them a new one for Christmas. I wanted to go because, well, I like learning new stuff about the web. I figured that I would learn stuff that would also be useful to me in others of my sites. And I did! But the amazing thing is this. My son had told me about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him. So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own. Just the night before I had written a response on Robin’s wonderful blog that reads in part: As I said earlier, I have a history of daily naps of at least 3 hours a day. It cuts into everything and prevents me from doing many things. I have to schedule my life around these naps and it’s awful. A few years ago I went on a Cushie trip to Rockford. I’ve been there a few times and it’s always so much fun. But this first year, we were going to another Cushie’s home for barbecue. I didn’t drive, I rested in the back of the car during the drive. We got there and I managed to stay awake for a little while. Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa. So, I have a long history of daily naps, not getting through the day, yadda, yadda. So, I was a little nervous about yesterday. I really wanted to go to this conference, and was afraid I’d have to go nap in my car. I got up at 5:30 am yesterday. Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil. (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens) I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM. NO NAP! I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g. I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!). I felt like I think normal people feel. I was amazed. Half my life wasted and I finally (thank you Michael!) had a good day. My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again! Maybe in another 25 years, I’ll take another pill. LOL Well, the energy from the Adrafinil was a one day thing. I felt great on Thursday. Friday and Saturday I slept more than usual. Saturday, today, was one of those days where I sleep nearly all day. Maybe if I took the drug more it would build up in my system, maybe not. But it was still worth having that one day where I felt what I imagine normal to be. While I was being a slug today, my husband painted the entire house. I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday. Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day. Information from a site that sells this: There’s more info about Adrafinil on Wikipedia It’s interesting that that snipped report that people become more talkative. I reported that in the original post, too, even though I didn’t realize that this was a possibility. A good quote that I wish I could relate to better: 2011 stuff starts here: Awhile ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before. Our son lives in New York and every few years he gives us tickets to see a Broadway show. A couple years ago we took the train to NY to see Wicked. Usually my DH wants to go out and see sights while we’re there. I usually want to nap. This time we got up on Saturday morning, went out for breakfast. I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil. We got back to the hotel and got ready to go to a museum or other point of interest. But, DH wanted to rest a bit first. Then our son closed his eyes for a bit… So, I found myself the only one awake for the afternoon. They both work up in time for the show… Sigh It was a great show, though. A recent Christmas I was going to get my son some Adrafinil as a gift. The original place we bought it didn’t have any more stock so I tracked it down as a surprise. He was going to give me some, as well, but couldn’t get it from the original source, either. So he found something very similar called Modafinil. GMTA! And 2016.. Saturday, 4/23/16 really was one of the best days I’ve had in a long time. I’ll be writing a longer post about that later on my travel blog but here’s the original plan: https://maryoblog.com/2016/04/23/busy-saturday/ Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!
  6. This is a tough one. Sometimes I’m in “why me” mode. Why Cushing’s? Why cancer? Unfortunately, there’s not a thing I can do about either. Cushing’s, who knows the risk factors? For kidney cancer, I found out the risk factors and nearly none apply to me. So why? But why not? No particular reason why I should be exempt from anything. Since there’s nothing to be done with the exception of trying to do things that could harm my remaining kidney, I have to try to make the best of things. This is my life. It could be better but it could be way worse. One of the Challenge topics was to write about “My Dream Day” so here’s mine… I’d wake up on my own – no snooze alarms – at about 8 am, sun streaming through the window. I’d we well rested and not have had any nightmares the night before. I remember my son is home for a visit but I let him sleep in for a while. I’d get out for a bike ride or a brisk walk, come home, head for the hot tub then shower. I’d practice the piano (or recorder or Aerophone) for a bit, then go out to lunch with friends, taking Michael with me. While we’re out, the maid will come in and clean the house. After lunch, maybe a little technology shopping/buying. Then the group of us go to one of our homes for piano duets, trios, 2-piano music. When we get home, it’s immaculately clean and I find that the Prize Patrol has visited and left a substantial check. I had wisely left something for dinner in the Ninja so dinner is ready. After dinner, I check online and find no urgent email, no work that needs to be done, no bills that need to be paid, no blog challenge posts to write… I wake up from My Dream Day and realize that this is so far from real life, so I re-read The Best Day of My Life and am happy that I’m not dealing with anything worse.
  7. Since I’m posting this on April 21, I had a built-in topic. http://cushieblog.files.wordpress.com/2012/04/nataile-blog.jpg?w=500 The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us. Natalie was the Cushie in the middle. Today is the anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice earlier. It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and getting people into remission. Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms? I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have. Then they died. It’s time this stopped! Speaking of death – what a cheery blog post this is turning out to be. NOT! Unfortunately, this seems to be one of the realities of Cushing’s. Tomorrow will be cheerier – watch for it!
  8. And today, we talk about pink jeeps and ziplines… How in the world did we get here in a Cushing’s Challenge? I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues. Clear? LOL http://cushieblog.files.wordpress.com/2012/04/pink-jeep.jpg?w=300&h=225&resize=300%2C225 I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006. I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006. My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise. I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any. An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards). Someone had brought a UFC jug and decorated her and had her pose around the ship. The beginning text reads: Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006. I convinced everyone that I was well enough to go off-road in a pink jeep, DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image. In 2009, I figured I have “extra years” since I survived the cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda. Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!
  9. In case you haven’t guessed it, my cause seems to be Cushing’s Awareness. I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop. I had been going along, raising my son, keeping the home fires burning, trying to forget all about Cushing’s. My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything. I started being a little active online, especially on AOL. At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s. Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active. What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge). I became more and more active in that group, helping out where I could, posting a few links here and there. Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio. I filled out a form on Power Surge to request a quote for building one. I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me. I was so nervous. I’m not a good phone person under the best of circumstances and here she was, calling me! I had to go to my computer class but I said I’d call when I got back. Alice showed me how to do some basic web stuff and I was off. As these things go, the O’Connor Music Studio page grew and grew… And so did the friendship between Alice and me. Alice turned out to be the sister I never had, most likely better than any sister I could have had. In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves. I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease. The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2022, we have over 73 thousand members. Some “rare disease”! This was on the intro page of Cushing’s Help until 2013… In August 2013 my friend died. In typical fashion, I started another website… I look around the house and see things that remind me of Alice. Gifts, print outs, silly stuff, memories, the entire AOL message boards on floppy disks… Alice, I love you and will miss you always… http://powersurgedotco.files.wordpress.com/2013/10/maryoonerose.gif?w=1000&resize=191%2C256
  10. Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge… When we have prayer time in my handbell practice or choir rehearsals I try to mention issues that are going on in the Cushing’s community. People are slowly but steadily learning about Cushing’s week by week. A piano student mentioned that a person in a group she is in has Cushing’s, a non-Cushie friend mentioned last week that she had gone with a friend of hers to an endo appointment to discuss Cushing’s. Get out there and talk about Cushing’s. Let people know that it’s not just for dogs and horses (and sometimes ferrets)! Here’s something I had made for Sue with SuperSue embroidered on the back. Picture your name instead: http://cushieblog.files.wordpress.com/2012/04/supersue.jpg?resize=425%2C600
  11. I used to carry a print out of this everywhere I go because I find it very soothing. This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Nineteen of the 2015 Cushing’s Challenge. These days, both these readings are available on my phone. I first read this in Chicken Soup for the Surviving Soul and is posted several places online. The Best Day Of My Life by Gregory M Lousignont Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate! Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger. I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice. Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know. Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me. Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me. I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine. And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures. As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever! When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.
  12. Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly. I alluded to this a couple days ago when I said: So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004. I took it for a while but never really felt any better, no more energy, no weight loss. Sigh. April 14 2006 I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something. So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours. Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test. Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. There were signs all over that no cellphones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 🙁 I finally decided to see my PCP after I got my husband home. When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and instantly became my new doctor. They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere. My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else. My next new “instant doctor” came to see me in the ER in the middle of the night. He patted my hand, like a loving grandfather might and said “At least you won’t have to do chemotherapy”. And I felt so reassured. It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer. I was so thankful for the way he told me. I would have really freaked out if he’d said that nothing they had was strong enough! My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case. My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body. I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis. So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later. My five years are up now. When I was 10 years free of this cancer my kidney surgeon *thought* it would be ok to try the growth hormone again. I was a little leery about this, especially where I didn’t notice that much improvement. What to do? BTW, I decided to…
  13. Way back when we first got married, my husband thought we might have a big family with a lot of kids. He was from a family of 6 siblings, so that’s what he was accustomed to. I am an only child so I wasn’t sure about having so many. I needn’t have worried. In January 1974 I had a miscarriage. I was devastated. My father revealed that my mother had also had a miscarriage. I had no idea. At some point later I tried fertility drugs. Clomid and another drug. One or both drugs made me very angry/depressed/bitchy (one dwarf I left off the image) Little did I know that these meds were a waste of time. Eventually, I did get pregnant and our wonderful son, Michael was born. It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s. When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be. I’ll never forget the fall when he was in second grade. He was leaving for school and I said goodbye to him. I knew I was going into NIH that day for at least 6 weeks and my future was very iffy. The night before, I had signed my will – just in case. He just turned and headed off with his friends…and I felt a little betrayed. Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet! Click on each page to enlarge. http://cushieblog.files.wordpress.com/2012/04/michael-1.jpg?w=150&h=150&resize=150%2C150 http://cushieblog.files.wordpress.com/2012/04/michael2.jpg?w=150&h=150&resize=150%2C150 When Michael started having headache issues in middle school, I had him tested for Cushing’s. I had no idea yet if it could be familial but I wasn’t taking any chances. It turned out that my father had also had some unnamed endocrine issues. Hmmm… I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child. 🙂 http://cushieblog.files.wordpress.com/2012/04/michael-belize.jpg?w=300&h=225&resize=300%2C225After I survived kidney cancer (Day Twelve, Cushing’s Awareness Challenge 2015) Michael and I went zip-lining – a goal of mine after surviving that surgery. This photo was taken in a treetop restaurant in Belize. For the mathematically inclined, this is his blog. Xor’s Hammer. I understand none of it. He also has a page of Math and Music, which I also don’t understand. I know it doesn’t fit into a Cushing’s awareness post but just because I’m a very proud mama – Michael got a PhD in math from Cornell and his thesis was Using Tree Automata to Investigate Intuitionistic Propositional Logic Michael explains How do we know the quintic is unsolvable? And, from his wedding: And, as of March 7, 2021:
  14. http://cushieblog.files.wordpress.com/2012/04/uva20041.jpg?w=1428&resize=468%2C351 Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos! As early as 2001 (or before) my pituitary function was dropping. My former endo tested annually but did nothing to help me with the symptoms. In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years. Needless to say, I left his office in tears, again. Fast forward 2 years to 2004. I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests. I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them. Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me. In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in. Other pictures from that convention are here. By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling. Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004. Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient. My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally. He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it. The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing. He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th. For those who are interested, my new endo is Roberto Salvatori, M.D. Assistant Professor of Medicine at Johns Hopkins Medical School: Catholic University School of Medicine, Rome, Italy Residency: Montefiore Medical Center Fellowship: Cornell University, Johns Hopkins University Board Certification: Endocrinology and Metabolism, Internal Medicine Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency. Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before? Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a guinea pig again? The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again. I finally started the Growth Hormone December 7, 2004. Was the hassle and 3 year wait worth it? Stay tuned when all will be revealed. Read Dr. Barbara Craven’s Guest Chat, October 27, 2004 Thanks for reading 🙂 http://cushieblog.files.wordpress.com/2012/04/maryo-butterfly-script.gif?w=468&resize=251%2C121
  15. In March of 1987, after the endo finally confirmed that I had Cushing’s, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward. When I left this hospital after a week, we didn’t know any more than we had before. As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. My husband asked my endo if it were his wife, if he would recommend this surgery. The endo responded that he was divorcing his wife – he didn’t care what happened to her. Oh, my! I chose NIH – closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial. The night before I was admitted, I signed my will. I was sure I was going to die there. If not during testing, as a result of surgery. The first time I was there was for 6 weeks as an inpatient. More of the same tests. There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece. My first roommate was a nurse. She spent the entire first night screaming in pain. I was very glad when they moved me to a new room! Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with – either a cure or dying. While I was at NIH, I was gaining about a pound a day! During the time I was home the weekend before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until reading the alumnae magazine a couple months later! She was the same class, same major, same home-town, same disease… We have a Scottish doctor named James Lind to thank for the clinical trial. He conducted the first ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy. Lind compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days. I’d like to think that I advanced the knowledge of Cushing’s at least a little bit by being a guinea pig in 1987-1989. From the NIH: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx Hope through Research Several components of the National Institutes of Health (NIH) conduct and support research on Cushing’s syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources. NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are under way to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushing’s syndrome caused by ectopic ACTH secretion. Studies are under way to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushing’s syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushing’s syndrome will yield new approaches to therapy. The NIH supports research related to Cushing’s syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushing’s syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.
  16. Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars. This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. I didn’t ask for yellow. That’s just what the rental company gave me. Somehow, they knew. This meeting is the one when we all met at Hoggy’s for dinner although some of us travelers stayed at this hotel. I’m the one in yellow and blue. Later in 2007, I bought my own truly Cushie Car. I even managed to get a butterfly on the tags. http://cushieblog.files.wordpress.com/2012/04/cushie-car1.jpg?w=1428&resize=468%2C351 So, where did all this blue and yellow come from, anyway? The answer is so easy and without any thought that it will amaze you! In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge. We wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that maybe I could. This website (http://www.cushings-help.com) first went “live” July 21, 2000. It was a one-page bit of information about Cushing’s. Nothing fancy. No message boards, no blogs, no wiki, no image galleries… Certainly no Cushing’s Awareness Challenges. I didn’t know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site. I didn’t want to put as much work <COUGH!> into the Cushing’s site as I had on the music studio site so I used a now defunct WYSIWYG (What You See Is What You Get) web editor called Microsoft FrontPage. One of their standard templates was – you guessed it! – blue and yellow. TaDa! Instant Cushie color scheme forever. Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew. But the colors stuck. Now, in this day of mobile web browsers and people going online on their cellphones, the website is being redone yet again. But the colors are still, and always, blue and yellow.
  17. This is one of the suggestions from the Cushing’s Awareness Challenge post: This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future. If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this. This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can. When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life. In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
  18. Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and the coronavirus which makes everything more hectic, stressful and tiring. It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s. You’d think things would be improved in the last 33 years. But, no. My mind wants things to have improved, so I’ve taken on more challenges, and my DH has provided some for me (see one of my other blogs, MaryOMedical). Thank goodness, I have only part-time jobs (4 0f them!), that I can mostly do from home. I don’t know how anyone post-Cushing’s could manage a full-time job! I can see this post morphing into the topic “My Dream Day“… I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run. Get home about 8:00AM and start on my website work. Later in the morning, I’d get some bills paid – and there would be enough money to do so! After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church job, then dinner. After dinner, check email, out with the dog, maybe handbell or choir practice, a bit of TV, then bed about 10PM Nothing fancy but NO NAPS. Work would be getting done, time for hobbies, the dog, 3 healthy meals. Just a normal life that so many take for granted. Or, do they?
  19. It’s Here! Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“. Read more about Dr. Cushing Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen. And don’t just raise awareness on April 8. Any day is a good day to raise awareness. I found this biography fascinating! I found Dr. Cushing’s life to be most interesting. I had previously known of him mainly because his name is associated with a disease I had – Cushing’s. This book doesn’t talk nearly enough about how he came to discover the causes of Cushing’s disease, but I found it to be a valuable resource, anyway. I was so surprised to learn of all the “firsts” Dr. Cushing brought to medicine and the improvements that came about because of him. Dr. Cushing introduced the blood pressure sphygmomanometer to America, and was a pioneer in the use of X-rays. He even won a Pulitzer Prize. Not for medicine, but for writing the biography of another Doctor (Sir William Osler). Before his day, nearly all brain tumor patients died. He was able to get the number down to only 5%, unheard of in the early 1900s. This is a very good book to read if you want to learn more about this most interesting, influential and innovative brain surgeon. What Would Harvey Say? http://cushieblog.files.wordpress.com/2013/08/harvey-book.jpeg?resize=183%2C276 (BPT) – More than 80 years ago renowned neurosurgeon, Dr. Harvey Cushing, discovered a tumor on the pituitary gland as the cause of a serious, hormone disorder that leads to dramatic physical changes in the body in addition to life-threatening health concerns. The discovery was so profound it came to be known as Cushing’s disease. While much has been learned about Cushing’s disease since the 1930s, awareness of this rare pituitary condition is still low and people often struggle for years before finding the right diagnosis. Read on to meet the man behind the discovery and get his perspective on the present state of Cushing’s disease. * What would Harvey Cushing say about the time it takes for people with Cushing’s disease to receive an accurate diagnosis? Cushing’s disease still takes too long to diagnose! Despite advances in modern technology, the time to diagnosis for a person with Cushing’s disease is on average six years. This is partly due to the fact that symptoms, which may include facial rounding, thin skin and easy bruising, excess body and facial hair and central obesity, can be easily mistaken for other conditions. Further awareness of the disease is needed as early diagnosis has the potential to lead to a more favorable outcome for people with the condition. * What would Harvey Cushing say about the advances made in how the disease is diagnosed? Significant progress has been made as several options are now available for physicians to use in diagnosing Cushing’s disease. In addition to routine blood work and urine testing, health care professionals are now also able to test for biochemical markers – molecules that are found in certain parts of the body including blood and urine and can help to identify the presence of a disease or condition. * What would Harvey Cushing say about disease management for those with Cushing’s disease today? Patients now have choices but more research is still needed. There are a variety of disease management options for those living with Cushing’s disease today. The first line and most common management approach for Cushing’s disease is the surgical removal of the tumor. However, there are other management options, such as medication and radiation that may be considered for patients when surgery is not appropriate or effective. * What would Harvey Cushing say about the importance of ongoing monitoring in patients with Cushing’s disease? Routine check-ups and ongoing monitoring are key to successfully managing Cushing’s disease. The same tests used in diagnosing Cushing’s disease, along with imaging tests and clinical suspicion, are used to assess patients’ hormone levels and monitor for signs and symptoms of a relapse. Unfortunately, more than a third of patients experience a relapse in the condition so even patients who have been surgically treated require careful long-term follow up. * What would Harvey Cushing say about Cushing’s disease patient care? Cushing’s disease is complex and the best approach for patients is a multidisciplinary team of health care professionals working together guiding patient care. Whereas years ago patients may have only worked with a neurosurgeon, today patients are typically treated by a variety of health care professionals including endocrinologists, neurologists, radiologists, mental health professionals and nurses. We are much more aware of the psychosocial impact of Cushing’s disease and patients now have access to mental health professionals, literature, patient advocacy groups and support groups to help them manage the emotional aspects of the disease. Learn More Novartis is committed to helping transform the care of rare pituitary conditions and bringing meaningful solutions to people living with Cushing’s disease. Recognizing the need for increased awareness, Novartis developed the “What Would Harvey Cushing Say?” educational initiative that provides hypothetical responses from Dr. Cushing about various aspects of Cushing’s disease management based on the Endocrine Society’s Clinical Guidelines. For more information about Cushing’s disease, visit www.CushingsDisease.com or watch educational Cushing’s disease videos on the Novartis YouTube channel at www.youtube.com/Novartis. From http://www.jsonline.com/sponsoredarticles/health-wellness/what-would-harvey-cushing-say-about-cushings-disease-today8087390508-253383751.html
  20. The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life: http://cushieblog.files.wordpress.com/2012/03/cushie-diagnosis.gif?resize=500%2C500 Egads! I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure. Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans… Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, apheresis (this was experimental at NIH) and specialty blood tests… The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.
  21. This is one of the suggestions from the Cushing’s Awareness Challenge post: Our “Official mascot” is the zebra. Our mascot In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“. According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept. The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. A zebra cup my DH bought me 🙂 By 1960, the aphorism was widely known in medical circles.” Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist! Cushing’s is too rare – you couldn’t possible have that. Well… rare means some people get it. Why couldn’t it be me? Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots. I posted this in 2010 in 40 Days of Thankfulness: Days Twenty-Two through Thirty Butterflies are something else again. I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye. My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds. From July, 2008
  22. Sleep. Naps. Fatigue, Exhaustion. I still have them all. I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.” That seems to be changing back, at least on the weekends. A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again. In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford. Someone else drove us to Lake Geneva, Wisconsin for the day. Too much travel, too Cushie, whatever, I was too tired to stay awake. I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Amazing that I traveled that whole distance – and missed the main event 🙁 This sleeping thing really impacts my life. Between piano lessons, I take a nap. I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps. I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep. I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending. A few years ago I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees). I come home from that exhausted – and in more pain than when I went. I knew it was working and my knee got better for a while, but it’s such a time and energy sapper. Neither of which I can really spare. Maybe now that I’m nearly 15 years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again. My surgeon says he “thought” it’s ok. I was sort of afraid to ask my endo about it, though but he gave me the go-ahead. I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney. I always laugh when I see that commercial online for something called Serovital. I saw it in Costco the other day and it mentions pituitary right on the package. I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands. But I won’t. I’ll take a nap instead because I’m feeling so old and weary today, and yesterday. Eventually, I did restart the GH, this time Omnitrope. And tomorrow…
  23. So, these are only seven of the many, many symptoms of Cushing’s. I had those above – and I often felt like I looked like one of those little bearded dwarves. Cushing’s affects every part of the body. It’s not like when I had kidney cancer and only the kidney was affected. Here are some of the many areas affected. Progressive obesity and skin changes Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back. Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin. Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms Thinning, fragile skin that bruises easily Slow healing of cuts, insect bites and infections Acne Women with Cushing’s syndrome may experience: Thicker or more visible body and facial hair (hirsutism) Irregular or absent menstrual periods Men with Cushing’s syndrome may experience: Decreased libido Decreased fertility Erectile dysfunction Other signs and symptoms include: Fatigue Muscle weakness Depression, anxiety and irritability Loss of emotional control Cognitive difficulties New or worsened high blood pressure Glucose intolerance that may lead to diabetes Headache Bone loss, leading to fractures over time Hyperlipidemia (elevated lipids – cholesterol – in the blood stream) Recurrent opportunistic or bacterial infections Think you have Cushing’s? Get to a doctor and don’t give up!
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