Well, it caught up with me! I got my shower to get ready to go to the doctor, and I couldn't get dressed! I kept feeling like passing out. I took my bp and it was 96/69, and I didn't take my bp meds. I knew with dropping my hydro my bp would drop too. At least I didn't take the meds on top of it! Anyway, I had to end up taking 5 mg. just so I could get to the doctor. That was enough to perk me up and raise my bp! She was kind of upset, not majorly, but she was going to test me again today. She couldn't do it since I'd taken the medicine. Oh well. I told her I had to, just so I could get dressed and get there! She wasn't mean about it. She is really nice!
All of my labs from the previous week looked good. She tested my thyroid again. She just wants to keep an eye on it to see if it goes whacky since it can after surgery. Right now, everything looks good. Since I had to go back on my hydro, she said, "Ok, you go back on it, and take it for a while, but try to wean off soon if you can. Then get back in here for another stim test." Then she said, "I don't usually let patients do that, so you should feel privileged." LOL! She was laughing. I really like her. She said she knew I was listening to my body and I'd been doing a good job weaning and I've made so much progress already, that she is happy with that.
My stim test was an ACTH stim test, not the CRH. I asked her how she knew my pituitary was giving the signal to my adrenals when we didn't do the CRH. I don't think she quite followed me, but she mentioned the fact that my ACTH before the stim test was 14. That is in range, and it does show that my pituitary is working again. She said that by taking the hydro, it is suppressing my adrenals. I see her point, but I also know that if it is not going to work, you can't force it either. She seems to think you can kind of force it to wake up and work. I really do like her. All I have to say is, she has never lived in an adrenally insufficient body. I don't care what any text book says, my body feels things that the text book doesn't tell you about. I'm all for getting off of the hydro. I don't like it, but I also don't want to end up in the ER with a crisis. Slow and steady wins the race!
So, I'm back on 5 mg. I felt good on that. I'll stay there for a week or so, then go down to 2.5 for a while before I go totally off of it again. Today is 10 weeks post op! Yay! I'm a Cushing's survivor!
Thursday, October 30, 2008
Wednesday, October 29, 2008
I'm off of all Hydro!
Monday was my last day of taking hydro. So far, so good. I'm just sore and tired. I always get tired when I do a wean. I don't usually get sore. It's funny how each wean has been different. I usually get one or two symptoms of a low, but not all of them all at once, and they don't last long. With the next wean, I get different symptoms. It's weird how they rotate.
I'm going in to see my local endo later today. I hope it's a good report, that all of my other hormones are in line, and not out of whack. I'm looking forward to just getting stronger, and living a Cushing's free life. I'll post what I find out at the Dr. later today.
I'm going in to see my local endo later today. I hope it's a good report, that all of my other hormones are in line, and not out of whack. I'm looking forward to just getting stronger, and living a Cushing's free life. I'll post what I find out at the Dr. later today.
Wednesday, October 22, 2008
Woo hoo! Dr. says go off of all steroids!
I'm excited to hear this news from the local doctor. Although, they seem to think I can just magically quit taking them and be OK. I know better. You have to wean, not quit cold turkey. The good news is, I can wean faster than I have been. I did a stim test and stimmed to almost 20 so they say to get off of the steroids now. That means I'll lose weight faster now, and hopefully get my blood pressure back to normal, discontinue meds for that and other things along the way. I feel like I'm getting my life back, slowly but surely.
My worst day post op is much better than my best day with Cushing's! This feeling is so exciting! I still don't feel 100%. I still wear out easily and require a lot of sleep, but that is becoming less and less too. All good signs!
So, for recording purposes, my baseline cortisol was 7.49. After stimulation it was 19.35. I have currently been at 12.5 mg. I'm going to take 10 mg. each day for the next 3 days, and if I feel good enough, go down to 5 mg. for 3 days, then totally off. If I feel too sick, I won't do it that fast, and I'll just tell my endo I have to take it slower. Hopefully next time I post, I will be steroid free, and on my way to total recovery! Yay! They said I have to do the stim test again in 4 weeks. I guess to see how well I'm still doing without the steroids. I'm not sure.
My worst day post op is much better than my best day with Cushing's! This feeling is so exciting! I still don't feel 100%. I still wear out easily and require a lot of sleep, but that is becoming less and less too. All good signs!
So, for recording purposes, my baseline cortisol was 7.49. After stimulation it was 19.35. I have currently been at 12.5 mg. I'm going to take 10 mg. each day for the next 3 days, and if I feel good enough, go down to 5 mg. for 3 days, then totally off. If I feel too sick, I won't do it that fast, and I'll just tell my endo I have to take it slower. Hopefully next time I post, I will be steroid free, and on my way to total recovery! Yay! They said I have to do the stim test again in 4 weeks. I guess to see how well I'm still doing without the steroids. I'm not sure.
Friday, October 17, 2008
Weaned again today
I decided to go down to 12.5 mg. of hydro today. So far, so good. It takes about 3 days to hit me though. I was starting to have some signs of a high again. I'm doing my stim test on Monday anyway, and the Endo may want me to go off of all of my hydro when I see her on the 29th. I'm not quitting cold turkey! I know better than that. Even if the stim test says I can go off of all hydro, I'm still going to wean down to get off of it, I'll just wean faster instead of dragging it out.
Thursday, October 16, 2008
8 weeks post op...Doctors, doctors, and more doctors!
I have been busy running to doctors appointments all week. I have more next week, and then one a week for the next 3 weeks after that!
On Monday, I went to the Dermatologist for a follow up on the moles she removed. The one was neoplastic hyperplasia. Not quite skin cancer, but people who have those are more likely to get skin cancer. Now I have to go in every year for a check up on all of my moles. Yay! Not! I do want to keep a check on it though. My mom had skin cancer, and I know I'm at high risk for it anyway.
Tuesday was my relax day. I went for a body wrap in the evening. That feels so good!
Yesterday, I went to the ENT. It took me a long time to get in, but it was worth it. He suctioned stuff out of the back of my nose, where I cannot reach, nor blow it out. My nasal washes were not making it budge either. Basically, I still had a small scab at the surgery site, but it was green, with other green goo. He put me on 3 weeks of antibiotics. The first 2 rounds of 10 days each didn't kick my sinus infection. Hopefully this will! He also said I have some scarring and my septum is kind of glued to the outside wall of my nose. He is going to get rid of that for me too. He can do it in office. That will be in about 3 weeks when I go back for a check up. He said that just happens sometimes when they do any kind of surgery up there around your sinuses.
I'd taken the girls with me to Columbus. They had to get some teeth pulled yesterday. We had time to kill, so I thought I'd go to my Endocrinologist's office, and get some blood work done. I'm going to see her on the 29th, so I wanted to have blood work done, to go over with her. They use to do walkin lab appointments. I found out yesterday that they quit that, but they did have an opening, so I only waited about 20 min. As it turned out, I didn't have any blood drawn. The nurse went to talk to my Dr., and she wants me to have the adrenal stim test done on Monday morning. So, I'm waiting to get blood work done until then. That means another long day in Columbus. ~sigh~! I have to be in her office at 8 am for that stim test. It takes an hour or so. It will tell if my adrenals are working good, and putting out enough cortisol for me to go off of my cortef. Then I have a follow up MRI at 1 pm in another location in Columbus. I'm excited about the stim test though! It would be great to be able to get all the way off of the hydro! Once I can do that, I'll really start losing the weight. Anyway, after a busy day of running ALL day, I went to the pharmacy, then came home and got ready to go to calling hours for my mom's cousin. It is such a sad situation.
After all of that running, I konked out good last night. I still take half of a sleeping pill, just to make sure I sleep. The previous night, I had been restless, tossing and turning. I haven't done that for a while. I think it's time for another wean anyway. I've noticed that lately, I sleep better at night. For a while after surgery, I still felt messed up on my sleep. I'd be sleepy all day, but not at night. I'm still sleeping a lot in the day too, but I'm sleeping better at night. I feel like my body is slowly changing around, and that is exciting!
Today is another busy day. I have to go to the dentist for my cleaning, and I have to take Zane to speech therapy later. Tomorrow, I get to crash! Actually, this whole weekend is free. Andy said he has noticed that I'm doing better. I have days I can do more, but I still get so tired and I just have to rest. Last weekend we had our church picnic. It seems like I did something on Friday too, but I can't remember. Anyway, I didn't do anything at the picnic, but it wore me out. I got up and went to Sunday school and morning church service, and I was whipped! I came home and went to sleep! I didn't even eat anything. I slept all afternoon, and all evening. Andy called me after church was over at night, and I was still sleeping. The phone is the only reason I woke up. I stayed up for a few hours, and went back to bed and slept until almost noon on Monday, but I had to get up to go to the doctor. So, I'm able to do more, but I still get wiped out easy.
I "feel" really good. I don't have the heart palpitations, feeling like passing out, etc., etc., any more. When my hydro gets too high, because my body is kicking in, and I'm taking the meds, then I get the Cushing's symptoms back, and I know it's time to wean. I get hot flashes, indigestion, zits, high blood pressure and high sugar. Those are all signs for me to wean. The other thing that has had me not feel 100% has been dealing with this sinus infection. When I would get to the end of my antibiotic, I'd feel pretty good. It only took a few days for it to start acting up again, and me to start feeling zapped again. I think that once I wean off of all of the hydro, and get rid of this sinus infection for good, I'll feel like a million bucks! Here's hoping anyway! Maybe I'll add some pictures soon. I haven't seen many changes for a while. I'm kind of at a standstill until I wean again.
On Monday, I went to the Dermatologist for a follow up on the moles she removed. The one was neoplastic hyperplasia. Not quite skin cancer, but people who have those are more likely to get skin cancer. Now I have to go in every year for a check up on all of my moles. Yay! Not! I do want to keep a check on it though. My mom had skin cancer, and I know I'm at high risk for it anyway.
Tuesday was my relax day. I went for a body wrap in the evening. That feels so good!
Yesterday, I went to the ENT. It took me a long time to get in, but it was worth it. He suctioned stuff out of the back of my nose, where I cannot reach, nor blow it out. My nasal washes were not making it budge either. Basically, I still had a small scab at the surgery site, but it was green, with other green goo. He put me on 3 weeks of antibiotics. The first 2 rounds of 10 days each didn't kick my sinus infection. Hopefully this will! He also said I have some scarring and my septum is kind of glued to the outside wall of my nose. He is going to get rid of that for me too. He can do it in office. That will be in about 3 weeks when I go back for a check up. He said that just happens sometimes when they do any kind of surgery up there around your sinuses.
I'd taken the girls with me to Columbus. They had to get some teeth pulled yesterday. We had time to kill, so I thought I'd go to my Endocrinologist's office, and get some blood work done. I'm going to see her on the 29th, so I wanted to have blood work done, to go over with her. They use to do walkin lab appointments. I found out yesterday that they quit that, but they did have an opening, so I only waited about 20 min. As it turned out, I didn't have any blood drawn. The nurse went to talk to my Dr., and she wants me to have the adrenal stim test done on Monday morning. So, I'm waiting to get blood work done until then. That means another long day in Columbus. ~sigh~! I have to be in her office at 8 am for that stim test. It takes an hour or so. It will tell if my adrenals are working good, and putting out enough cortisol for me to go off of my cortef. Then I have a follow up MRI at 1 pm in another location in Columbus. I'm excited about the stim test though! It would be great to be able to get all the way off of the hydro! Once I can do that, I'll really start losing the weight. Anyway, after a busy day of running ALL day, I went to the pharmacy, then came home and got ready to go to calling hours for my mom's cousin. It is such a sad situation.
After all of that running, I konked out good last night. I still take half of a sleeping pill, just to make sure I sleep. The previous night, I had been restless, tossing and turning. I haven't done that for a while. I think it's time for another wean anyway. I've noticed that lately, I sleep better at night. For a while after surgery, I still felt messed up on my sleep. I'd be sleepy all day, but not at night. I'm still sleeping a lot in the day too, but I'm sleeping better at night. I feel like my body is slowly changing around, and that is exciting!
Today is another busy day. I have to go to the dentist for my cleaning, and I have to take Zane to speech therapy later. Tomorrow, I get to crash! Actually, this whole weekend is free. Andy said he has noticed that I'm doing better. I have days I can do more, but I still get so tired and I just have to rest. Last weekend we had our church picnic. It seems like I did something on Friday too, but I can't remember. Anyway, I didn't do anything at the picnic, but it wore me out. I got up and went to Sunday school and morning church service, and I was whipped! I came home and went to sleep! I didn't even eat anything. I slept all afternoon, and all evening. Andy called me after church was over at night, and I was still sleeping. The phone is the only reason I woke up. I stayed up for a few hours, and went back to bed and slept until almost noon on Monday, but I had to get up to go to the doctor. So, I'm able to do more, but I still get wiped out easy.
I "feel" really good. I don't have the heart palpitations, feeling like passing out, etc., etc., any more. When my hydro gets too high, because my body is kicking in, and I'm taking the meds, then I get the Cushing's symptoms back, and I know it's time to wean. I get hot flashes, indigestion, zits, high blood pressure and high sugar. Those are all signs for me to wean. The other thing that has had me not feel 100% has been dealing with this sinus infection. When I would get to the end of my antibiotic, I'd feel pretty good. It only took a few days for it to start acting up again, and me to start feeling zapped again. I think that once I wean off of all of the hydro, and get rid of this sinus infection for good, I'll feel like a million bucks! Here's hoping anyway! Maybe I'll add some pictures soon. I haven't seen many changes for a while. I'm kind of at a standstill until I wean again.
Friday, October 3, 2008
6 weeks post op
I'm doing fine at 15 mg. in the AM. I feel good on it. I got past the pukey feeling days, and now feel pretty good! I just finished the antibiotic, and I still have some sinus infection. I have an appt. with the ENT, but that won't be until the 15th. They couldn't get me in sooner. Turns out my doc retired, and I get a new one there. He's not new, just new to me.
I'm still seeing changes in the right direction. I can't remember if I posted it last time, but I've lost 5 lbs. now, and around 20 inches. My watch was snug when I bought it right before surgery. It is my medical alert watch. I could barely get it clasped. Now it slops everywhere. I have a picture to show how loose it is now. I also have a picture of my nice nails! They haven't been this long for ages!
I'm also posting some pics of the morning of surgery, and now, in the same dress. You can see that my sleeves were stretched to the hilt before, and now they are loose. You can also see that my stomach is much smaller than it was. It's still a long road to go, but I am seeing improvements! Yay! Even though it will take a long time to get back to normal, it still seems amazing that things can change so fast after surgery! I'm loving every minute of it!
Gracie
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