I am over a year and a half post-op pituitary surgery for Cushing's. I had to take Cortef to replace my cortisol for nearly a year after surgery. I could not WAIT to get off the stuff. After all, patients like me have been suffering with an excess of cortisol for some time. It's the stuff that made us fat, depressed, achey, and red-faced, among other things. So it's probably understandable that we all want to get off of it asap! But the problem is, my adrenals aren't doing the job totally just yet. I think (hope) they will, but it's weeks like this one that make me wonder.
I've been really busy this past week. I drove over 1100 miles in 5 days, visiting with my children and grandchildren. I didn't get enough sleep during the week. I walked miles and miles, I didn't eat right, and I was busy every minute. The day after I returned home, my stepdaughters threw a party to celebrate our anniversary here at our place and so I had a million things to do to get ready for that, too. I was not feeling well the night of the party, and actually went to bed with a headache before all the guests were gone. Yesterday was the first downtime I've had for over a week and I could barely function. I had clean-up to do around here and was really having a hard time of it. It hit me yesterday that the pain I was experiencing virtually in every bone in my body could be signalling that I was too low in cortisol, so I took a little Cortef...very little, just 1.25 mg, thinking that might help. It didn't. I had a headache on top of hurting all over. So this morning when I got up (at NOON!!!) I took 5 mg. It is amazing how quickly that stuff works. Within an hour, my aching bones felt better, but I still felt very weak. So then I dug into my vat of meds and took some Florinef, too. Tonight I feel "normal". At least I feel what my version of normal is these days.
I wonder how long it will be before I can depend on my adrenals to do the job properly. I wonder how long before I no longer have to carry emergency meds or worry about keeping enough Cortef and Florinef on hand to treat myself during these low times.
I love my steroids. And I hate them, too. But right now I can't live without 'em.
Monday, September 1, 2008
Thursday, August 28, 2008
Visit with the Kids and Aftermath of Lightning
I've been away from home all week, visiting my kids. A girlfriend and I drove down to the Detroit area to see our daughters, and then my daughter and I drove down to Indiana to visit my son and his family. It has been a good visit, I've enjoyed seeing my kids and grandkids, but I am about ready to get back home. Tomorrow my friend will meet me back here at my daughter's, and we will head north. It will take around 4 hours to get there.
I'm not sure I've mentioned this, but my grandchildren are all brilliant and gorgeous. :)
The hub called and told me there are 2 more holes in the house that he just found. One had a metal lawnchair leaned up against it on the deck, and I'm not sure where the other one is. So that's 4 holes in the house now. They aren't huge holes, but they do illustrate the power of electricity mixed with lightning! Also, the phone is out and he is waiting for Verizon to show up today. And it looks like the fireplace blower is shot. Sounds like we will be having work done for a while to get things back in order. Tomorrow the insurance adjustor arrives, and Hub says that he does not sound very helpful or even very bright. Here's the conversation he had with the guy:
Adjustor: Did the electrician check out everything you say is not working?
Hub: No
Adjustor: Why not?
Hub: Well, he was sort of busy trying to restore power to the house all day.
Adjustor: Then how do you know things aren't working?
Hub: Because they don't work.
This should be interesting! Sorry I am going to miss most of the interaction tomorrow.
I'm not sure I've mentioned this, but my grandchildren are all brilliant and gorgeous. :)
The hub called and told me there are 2 more holes in the house that he just found. One had a metal lawnchair leaned up against it on the deck, and I'm not sure where the other one is. So that's 4 holes in the house now. They aren't huge holes, but they do illustrate the power of electricity mixed with lightning! Also, the phone is out and he is waiting for Verizon to show up today. And it looks like the fireplace blower is shot. Sounds like we will be having work done for a while to get things back in order. Tomorrow the insurance adjustor arrives, and Hub says that he does not sound very helpful or even very bright. Here's the conversation he had with the guy:
Adjustor: Did the electrician check out everything you say is not working?
Hub: No
Adjustor: Why not?
Hub: Well, he was sort of busy trying to restore power to the house all day.
Adjustor: Then how do you know things aren't working?
Hub: Because they don't work.
This should be interesting! Sorry I am going to miss most of the interaction tomorrow.
Saturday, August 23, 2008
Advocating
I have to admit, the past few months I have not been a very good advocate for my fellow Cushing's sufferers. I don't have any excuse except that I am sick to death of Cushing's. I want it eradicated. I don't want people hurting and suffering, and for awhile I just couldn't stand to watch others going through it. It is a terrible, heartbreaking disease that destroys lives and relationships, as well as bodies and minds and self-esteem. It steals years from patients, as doctors hem and haw and let us suffer. It's just not right.
I've even found myself not wanting to get to know more Cushing's patients because I know what they are going through, and I just couldn't deal with more of the same thing. I know that is selfish, but I think it was really just self-preservation. But I am beyond that now, at least I hope so.
If I were to tell you of the people I know who have had dozens of high tests over a period of years who keep getting told to wait for surgery because "I'm just not sure", you would not believe it. If you get a high midnight serum test result, the doctor explains it away: You must have been stressed driving to the hospital at night. If that were true, why do we never have highs in the daytime due to driving to the hospital? It just doesn't make any sense. But do these doctors even know that cyclic Cushing's patients usually have low daytime levels and high nighttime levels? I am quite positive that they do not.
I have a friend who mainly gets highs on all her tests. Every time she gets one, the doctor tells her to try one more. If she should get a low result the doctor says See? You don't have it! But she gets more highs than lows and the doctor never will admit that she has it, and she will not send her to surgery. This woman is sick, and has gained 80 pounds. She is a beautiful woman without a moon face. But she was a size 2 in her former life, the one she lived without Cushing's. She was willowy then, and she has always had a slender face. She doesn't fit the picture most doctors think all Cushing's patients look like.
It's not fair! It's not right! They are making people suffer, and why? Because they were told in medical school that they will probably never see a case of Cushing's in their lifetime - that's how rare it is. My friends and I agree that they probably won't see a case in their lifetime, because they will not open their eyes, and they will not open their minds, and they do not read the research that says it's not as rare as they once were told.
I am angry about how I was treated when I was so sick. And I am not alone. I'm going to work at being a better advocate.
I've even found myself not wanting to get to know more Cushing's patients because I know what they are going through, and I just couldn't deal with more of the same thing. I know that is selfish, but I think it was really just self-preservation. But I am beyond that now, at least I hope so.
If I were to tell you of the people I know who have had dozens of high tests over a period of years who keep getting told to wait for surgery because "I'm just not sure", you would not believe it. If you get a high midnight serum test result, the doctor explains it away: You must have been stressed driving to the hospital at night. If that were true, why do we never have highs in the daytime due to driving to the hospital? It just doesn't make any sense. But do these doctors even know that cyclic Cushing's patients usually have low daytime levels and high nighttime levels? I am quite positive that they do not.
I have a friend who mainly gets highs on all her tests. Every time she gets one, the doctor tells her to try one more. If she should get a low result the doctor says See? You don't have it! But she gets more highs than lows and the doctor never will admit that she has it, and she will not send her to surgery. This woman is sick, and has gained 80 pounds. She is a beautiful woman without a moon face. But she was a size 2 in her former life, the one she lived without Cushing's. She was willowy then, and she has always had a slender face. She doesn't fit the picture most doctors think all Cushing's patients look like.
It's not fair! It's not right! They are making people suffer, and why? Because they were told in medical school that they will probably never see a case of Cushing's in their lifetime - that's how rare it is. My friends and I agree that they probably won't see a case in their lifetime, because they will not open their eyes, and they will not open their minds, and they do not read the research that says it's not as rare as they once were told.
I am angry about how I was treated when I was so sick. And I am not alone. I'm going to work at being a better advocate.
Lightning Struck Our House
Lightning struck our house this morning. I was getting ready to step outside to go to the bank and turned to look for the umbrella since it was pouring down rain. Then BOOM and a ball of fire and holy crapola!
We have 3 pines growing up through our deck and 2 were hit. Hub was on the laptop and got a little shock, but is ok, thank God. We looked outside when the rain slowed. There are 2 holes blown in the side of the house. And there were 2 dead birds lying on the deck. :(
We have no power. The electric company came and restored it from the main source, but an electrician has to come check things out before we can check to see what appliances might have been fried.
Oh, the fire department was here, too, looking for heat with a geothermal camera, and said it looked fine.
Sheesh! What an exciting day. I'm exhausted. I'm just glad the hub wasn't hurt, and that I didn't step outside when I planned to.
I guess this is the price you pay for living on a hill in the woods. The picture of the wooded lane at the top of the page is our lane, part of the beauty we get to enjoy here everyday.
But I'm still shook up!
We have 3 pines growing up through our deck and 2 were hit. Hub was on the laptop and got a little shock, but is ok, thank God. We looked outside when the rain slowed. There are 2 holes blown in the side of the house. And there were 2 dead birds lying on the deck. :(
We have no power. The electric company came and restored it from the main source, but an electrician has to come check things out before we can check to see what appliances might have been fried.
Oh, the fire department was here, too, looking for heat with a geothermal camera, and said it looked fine.
Sheesh! What an exciting day. I'm exhausted. I'm just glad the hub wasn't hurt, and that I didn't step outside when I planned to.
I guess this is the price you pay for living on a hill in the woods. The picture of the wooded lane at the top of the page is our lane, part of the beauty we get to enjoy here everyday.
But I'm still shook up!
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