It's been a rough couple of weeks here at Cushing's Central. My system has completely gone independent and taken my cortisol with it. Whence last we talked, I was awaiting the results from my blood draw taken on Friday 7/22 to see if my cortisol was still very low (technically making me adrenal insufficient rather than having Cushing's) or if the low cortisol results from the 7/15 blood draw were a trend. Well, true to the way things seem to happen to me, my cortisol level was "undetectable". Huh? My cortisol level is bouncing around more than a ping pong ball at the Beijing Olympics! What the heck is going on? And the answer to that million dollar question is...wait for it...we don't know. Kind of takes the air out of the room, doesn't it.
The awesome news is that I've started taking hydrocortisone to add in the cortisol that my body doesn't seem to be in the mood to produce by itself. I started that on Wednesday 7/27 and by Thursday I felt 100% better. With really low, or no, cortisol, you are exhausted all the time, you don't want to eat, you feel yucky, and mentally you can't bring yourself to want to do anything. Not a happy place for the Princess. And I was going on 2 weeks of this. So a little relief, even if it comes in pill form, is much appreciated. I am happy to report that I'm pretty much back to my energetic productive self and accomplishing all sorts of home improvement projects!
The bad news is that weekly blood tests and peeing in a jug are in my future for EVER! If we don't know from week to week what my cortisol level will be, we can't medicate it consistently. So we have to check it every week and decide whether I need cortisol added back in or not. GAH! I am still taking Metty, so when my body decides to produce cortisol, it will be controlled and I won't go back into full blown Cushing's.
I'm not due to go back to the NIH until November for more scans. This will be 6 months from my last scans and that's the schedule we've been on. There really isn't anything they can do for me at this point except for what they are doing. It's up to my tumor to show itself so that we can remove it and get my system back on track. Until then, look for a pee jug in my fridge!
Sunday, July 31, 2011
Thursday, July 21, 2011
Time marches on
I just realized this morning that it's coming up on a year that I have been writing this blog. I never expected my Cushing's saga to go on this long and certainly never expected to still be writing about it. And yet the winding road of my particular medical malady continues to stretch out in front of me with no end in sight. It's frustrating, confusing, ridiculous and ultimately boring as hell. I get so tired of being the sick one. Especially since I was the healthiest person I knew up to a couple of years ago. I look forward to the day when I can shut this blog down after proclaiming the end in whatever form and function, of my Cushing's. It looks like I'll be looking forward to that for a while longer.
The news this week came in the form of the results of my blood and 24 hour urine (pee in a jug) tests last Friday. It seems that my cortisol level went from very high (Cushing's) to very low (adrenal insufficiency) in the span of a week. You might now be saying to yourself "wow, that Metty really did it's job", but even Metty isn't that good. We had increased the dose based on a slight decrease in my cortisol level the week before last, but not nearly enough to send my cortisol level through the basement floor. So what happened? Here's where the story just keeps getting better. We think my tumor has just decided to go rogue.
When I went off Muffy, it was because my cortisol level had dropped very low sending me into adrenal insufficiency. At the time back in May, we chalked it up to a reaction to Muffy. My cortisol level bounced around for a while and eventually roared back to it's off the charts level. Now the same thing is happening again. Without Muffy to blame, and Metty not being in place long enough to have this effect, we are falling back on an explanation that was bantered around back in May - maybe the tumor that we can't find that is causing all this havoc in my system is just doing it's own thing. Maybe it's alternating it's messaging to my adrenals between "go go go produce produce produce!" and "stop stop stop don't do anything!". While I do appreciate the irony and flat out ridiculousness of that possibility, I must say it's not really what I want to have happen in my body.
How do you medicate something that is not being consistent and shows no signs of cooperating with the laws of consistency? Good question, we're working on that. Bottom line is that we're holding until we get the results from tomorrow's blood and urine tests to see what the little rat bastard tumor decided to do this week. If my cortisol keeps ping ponging around, we may have to block it completely through medication and dose it back in with another medication. GAH!
So, sadly it looks like this blog will be here for a while longer. The only thing I can guarantee is that it won't be dull!
The news this week came in the form of the results of my blood and 24 hour urine (pee in a jug) tests last Friday. It seems that my cortisol level went from very high (Cushing's) to very low (adrenal insufficiency) in the span of a week. You might now be saying to yourself "wow, that Metty really did it's job", but even Metty isn't that good. We had increased the dose based on a slight decrease in my cortisol level the week before last, but not nearly enough to send my cortisol level through the basement floor. So what happened? Here's where the story just keeps getting better. We think my tumor has just decided to go rogue.
When I went off Muffy, it was because my cortisol level had dropped very low sending me into adrenal insufficiency. At the time back in May, we chalked it up to a reaction to Muffy. My cortisol level bounced around for a while and eventually roared back to it's off the charts level. Now the same thing is happening again. Without Muffy to blame, and Metty not being in place long enough to have this effect, we are falling back on an explanation that was bantered around back in May - maybe the tumor that we can't find that is causing all this havoc in my system is just doing it's own thing. Maybe it's alternating it's messaging to my adrenals between "go go go produce produce produce!" and "stop stop stop don't do anything!". While I do appreciate the irony and flat out ridiculousness of that possibility, I must say it's not really what I want to have happen in my body.
How do you medicate something that is not being consistent and shows no signs of cooperating with the laws of consistency? Good question, we're working on that. Bottom line is that we're holding until we get the results from tomorrow's blood and urine tests to see what the little rat bastard tumor decided to do this week. If my cortisol keeps ping ponging around, we may have to block it completely through medication and dose it back in with another medication. GAH!
So, sadly it looks like this blog will be here for a while longer. The only thing I can guarantee is that it won't be dull!
Sunday, July 17, 2011
Anniversivus Festivus
What were you doing 18 years ago today? I was getting married!! And Wendy, Robin and Dawn were there with us! Thanks guys!
Keith and I have Festivus plans for today - We're going to see the new Winnie the Pooh movie. I know, I know...there might be children there. But we're going to take that chance because it's our special day. We started the Festivus last night going out to a very lovely dinner at our favorite "nice" restaurant (defined as an establishment where shorts are not appropriate as dinner attire) and had wine, an appetizer and salads in addition to our entree. Dessert too! We blew the doors off in celebration of our special day and it was good. Of course at 6:00 pm when Keith's watch alarm went off so that I'd remember to take my Metty, the reality of my situation crept back in.
We have increased my dose of Metty as it does battle with my cortisol. It's working to bring down my cortisol level, but not very much or very fast. So now I'm taking more and we'll see what happens. I still have a Cushing's belly, and Cushing's induced disrupted nighttime sleep patterns, but those, thankfully, are the only symptoms I'm experiencing. I appreciate that, but don't want to push my luck. I'm really hoping that Metty kicks in and starts to do a number on my ever so stubborn cortisol level. Everybody keep your fingers and toes crossed!
As far as my hip recovery goes, I'm doing great. Still a little sore, but my leg strength is coming back and I feel really good. I'm hoping to get back in the gym for some cardio this week in addition to doing my physical therapy exercises and home improvement projects. Life is returning to normal on that front and it is very good news.
Go forth and celebrate today. It is, after all, our anniversary. That's worthy of celebration throughout the land!
Keith and I have Festivus plans for today - We're going to see the new Winnie the Pooh movie. I know, I know...there might be children there. But we're going to take that chance because it's our special day. We started the Festivus last night going out to a very lovely dinner at our favorite "nice" restaurant (defined as an establishment where shorts are not appropriate as dinner attire) and had wine, an appetizer and salads in addition to our entree. Dessert too! We blew the doors off in celebration of our special day and it was good. Of course at 6:00 pm when Keith's watch alarm went off so that I'd remember to take my Metty, the reality of my situation crept back in.
We have increased my dose of Metty as it does battle with my cortisol. It's working to bring down my cortisol level, but not very much or very fast. So now I'm taking more and we'll see what happens. I still have a Cushing's belly, and Cushing's induced disrupted nighttime sleep patterns, but those, thankfully, are the only symptoms I'm experiencing. I appreciate that, but don't want to push my luck. I'm really hoping that Metty kicks in and starts to do a number on my ever so stubborn cortisol level. Everybody keep your fingers and toes crossed!
As far as my hip recovery goes, I'm doing great. Still a little sore, but my leg strength is coming back and I feel really good. I'm hoping to get back in the gym for some cardio this week in addition to doing my physical therapy exercises and home improvement projects. Life is returning to normal on that front and it is very good news.
Go forth and celebrate today. It is, after all, our anniversary. That's worthy of celebration throughout the land!
Monday, July 11, 2011
To Improve or not to Improve - that is the question...
I'm not talking personal improvement here people, I'm talking Home Improvement! Paint. Caulk. Trim. Curtains. Decor. The whole shebang. Those of you who have found me on the Facebook machine know that I've been obsessed with working on the house while recovering from my left hip replacement surgery. That may also seem to be a little strange even for someone like me who loves to pretend I'm an HGTV guru with an ability to turn even the saddest space into a retreat worthy of a high end spa. However in my convoluted way of thinking, home improvement projects are the perfect way of dealing with my situation right now. See if you can follow the logic (or lack thereof) here...
When you're trapped in the house recovering from surgery there is nothing else to look at but the TV and the walls. If you don't like the color of those walls, or the curtains hanging in the window on one of those walls, there isn't much you can do about obsessing over it. It's always there - taunting you. Mocking you. Challenging you to do something about it. This is how the list of projects begins. Out of an Oxycodone haze a beautiful home can grow...
The next step is actually starting the projects on the ever burgeoning home improvement to do list. Here's where, again, Cushing's has served me well over the last year and a half. I have all the supplies to do most of the projects that need to be done. Cushing's kind of just put a stop to my activity but only after I had stocked up on painting supplies, home decor fabric, wood stripping supplies, and much much more. I have a labeler. I have plastic bins in the basement. I have OCD. Need I say more? So I was all set to pick up where Cushing's made me leave off as soon as my hip stopped being a constant pain level 8 and my energy level and strength came up from below the basement.
The last step is doing. Here's where I think people wonder how and why I do it. My response is "what else is there to do?" Seriously, what else? Sit around? Watch TV? Read a book? All good options, don't get me wrong. But not fitting for what I'm going through physically and mentally right now. I'm stressed out that the Cushing's symptoms are coming back. I'm starting on a new medication that my body will react to God knows how. I'm not sleeping. I'm recovering from major surgery and trying to get physically back to "normal". And it's really, really hot outside. All of that is an omen to me saying stay inside and work like a dog. When all this is over I'll have a beautiful home as well as a healthy body. What more could a girl ask for?
So I highly recommend the Home Improvement Physical Therapy method. It's fun, it's productive and it's profitable at resale.
When you're trapped in the house recovering from surgery there is nothing else to look at but the TV and the walls. If you don't like the color of those walls, or the curtains hanging in the window on one of those walls, there isn't much you can do about obsessing over it. It's always there - taunting you. Mocking you. Challenging you to do something about it. This is how the list of projects begins. Out of an Oxycodone haze a beautiful home can grow...
The next step is actually starting the projects on the ever burgeoning home improvement to do list. Here's where, again, Cushing's has served me well over the last year and a half. I have all the supplies to do most of the projects that need to be done. Cushing's kind of just put a stop to my activity but only after I had stocked up on painting supplies, home decor fabric, wood stripping supplies, and much much more. I have a labeler. I have plastic bins in the basement. I have OCD. Need I say more? So I was all set to pick up where Cushing's made me leave off as soon as my hip stopped being a constant pain level 8 and my energy level and strength came up from below the basement.
The last step is doing. Here's where I think people wonder how and why I do it. My response is "what else is there to do?" Seriously, what else? Sit around? Watch TV? Read a book? All good options, don't get me wrong. But not fitting for what I'm going through physically and mentally right now. I'm stressed out that the Cushing's symptoms are coming back. I'm starting on a new medication that my body will react to God knows how. I'm not sleeping. I'm recovering from major surgery and trying to get physically back to "normal". And it's really, really hot outside. All of that is an omen to me saying stay inside and work like a dog. When all this is over I'll have a beautiful home as well as a healthy body. What more could a girl ask for?
So I highly recommend the Home Improvement Physical Therapy method. It's fun, it's productive and it's profitable at resale.
Saturday, July 2, 2011
The Shrek-man cometh...
He's BAAAACCCCKKKKKK!!!!!
Well, not really. Not as bad as before surely (and don't call me Shirley...). But Shrek is definitely on the rise.
Let me back up a bit. My left hip is doing FANTASTIC! Couldn't ask for anything better. Couldn't expect better results. It's only been a little over two weeks since being filleted like your favorite fish, having a large bone shaved down, a new part pounded in and glued into it, and everything around it kind of put back in place and then sewed (stapled actually) closed. I'm motoring around without my fabulous pink cane for the most part and returning to my usual activities and chores. I do still have some mobility issues - I can't bend much past 90 degrees on the left leg at the hip. So that means things like painting baseboard trim will have to wait. But for the most part I can kind of work around it by throwing my left leg out behind me when I bend over. Again, being able to work out and stay active right up to the surgery is serving me well right now. It wasn't fun, but in the long run I'm so much better off. My incision is still healing and my hip is still a bit swollen. But I don't have nearly the same level of bruising and swelling that I had two years ago. But without those nasty staples in there I'll be healed up in no time.
With that being said, now we're whiplashing back to Cushing's. It's taken a back seat to the hip issues over the past couple of months because my cortisol level took a dump for some mysterious reason and my pain level in the left hip was hitting Mount Everest highs. Now that Muffy is well out of my system, my cortisol level is back off the charts high. This means I have been waking up every day looking for even the smallest symptom to have appeared overnight. Ready to enter the bathroom and find Shrek staring back at me in the mirror. No, in reality it doesn't work like that. But once you lived through the Cushing's transformation into Jabba the Hut once, it's hard not to expect to see it again behind every turn and in every mirror. The bright side is that I can look back to a little over two years ago when my initial Cushing's symptoms started to appear. I didn't realize what was happening at the time, but now I see how gradual and insidious the onset was. But still, I expect to see Shrek every morning. Go figure...
The only symptoms that I see coming back now is a large belly and disrupted sleep patterns. Nothing that anyone but me would notice. And Keith. When I'm playing spider solitaire at 3am on my phone it's kind of noticeable to the person with whom I share a bed. My pants still fit so the belly thing is more of an annoyance than a problem.
My gaggle has decided to start me on a different medication. It's called metyrapone. We're calling it Metty. This drug works completely differently than Muffy. Metty should work on reducing my cortisol production where Muffy just blocked the reception of all the excess cortisol I was producing. I say should because, well, this is ME we're talking about and nothing ever really works exactly the way it's supposed to. I will be doing weekly blood tests here in Kansas City at my local gaggle member's office (Dr. Laney) to document what my cortisol is doing and that my other bodily functions are not totally flipping out in response. Dr. Nieman (head Gaggle member and all around world wide Cushing's Queen) at the NIH has already petitioned the drug company for a supply of Metty for my use and it has been granted. Fed-x is in possession of it as we speak and I'll be starting to take it as soon as they deliver it to my front doorstep.
So there you have it my dear readers. My life continues to spin in the most obtuse of ways. But life is good, my ass is free of staples, and our 18th wedding anniversary is coming up in a couple of weeks. Who could really ask for anything more than that??? Go forth and smile. Appreciate everything.
Well, not really. Not as bad as before surely (and don't call me Shirley...). But Shrek is definitely on the rise.
Let me back up a bit. My left hip is doing FANTASTIC! Couldn't ask for anything better. Couldn't expect better results. It's only been a little over two weeks since being filleted like your favorite fish, having a large bone shaved down, a new part pounded in and glued into it, and everything around it kind of put back in place and then sewed (stapled actually) closed. I'm motoring around without my fabulous pink cane for the most part and returning to my usual activities and chores. I do still have some mobility issues - I can't bend much past 90 degrees on the left leg at the hip. So that means things like painting baseboard trim will have to wait. But for the most part I can kind of work around it by throwing my left leg out behind me when I bend over. Again, being able to work out and stay active right up to the surgery is serving me well right now. It wasn't fun, but in the long run I'm so much better off. My incision is still healing and my hip is still a bit swollen. But I don't have nearly the same level of bruising and swelling that I had two years ago. But without those nasty staples in there I'll be healed up in no time.
With that being said, now we're whiplashing back to Cushing's. It's taken a back seat to the hip issues over the past couple of months because my cortisol level took a dump for some mysterious reason and my pain level in the left hip was hitting Mount Everest highs. Now that Muffy is well out of my system, my cortisol level is back off the charts high. This means I have been waking up every day looking for even the smallest symptom to have appeared overnight. Ready to enter the bathroom and find Shrek staring back at me in the mirror. No, in reality it doesn't work like that. But once you lived through the Cushing's transformation into Jabba the Hut once, it's hard not to expect to see it again behind every turn and in every mirror. The bright side is that I can look back to a little over two years ago when my initial Cushing's symptoms started to appear. I didn't realize what was happening at the time, but now I see how gradual and insidious the onset was. But still, I expect to see Shrek every morning. Go figure...
The only symptoms that I see coming back now is a large belly and disrupted sleep patterns. Nothing that anyone but me would notice. And Keith. When I'm playing spider solitaire at 3am on my phone it's kind of noticeable to the person with whom I share a bed. My pants still fit so the belly thing is more of an annoyance than a problem.
My gaggle has decided to start me on a different medication. It's called metyrapone. We're calling it Metty. This drug works completely differently than Muffy. Metty should work on reducing my cortisol production where Muffy just blocked the reception of all the excess cortisol I was producing. I say should because, well, this is ME we're talking about and nothing ever really works exactly the way it's supposed to. I will be doing weekly blood tests here in Kansas City at my local gaggle member's office (Dr. Laney) to document what my cortisol is doing and that my other bodily functions are not totally flipping out in response. Dr. Nieman (head Gaggle member and all around world wide Cushing's Queen) at the NIH has already petitioned the drug company for a supply of Metty for my use and it has been granted. Fed-x is in possession of it as we speak and I'll be starting to take it as soon as they deliver it to my front doorstep.
So there you have it my dear readers. My life continues to spin in the most obtuse of ways. But life is good, my ass is free of staples, and our 18th wedding anniversary is coming up in a couple of weeks. Who could really ask for anything more than that??? Go forth and smile. Appreciate everything.
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