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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!
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…
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!