I just changed my settings. I put this blog up to help others with Cushing's and for family and friends to be able to catch up with what's going on. I had an insensitive jerk post on my last blog post that I still look enormous and I should eat more cake, blah, blah, blah.
Why do people not care that you've had a DISEASE that you could not help? The DISEASE made me fat, not cake! I don't even like cake very well!
Usually people don't get under my skin like that. Lately, it's just been hard. I'm dealing with my own recovery issues and starting testing on 2 of the kids is a bit overwhelming. Then I seen this jerks post and it tipped me over the edge.
Wednesday, November 18, 2009
Tuesday, September 22, 2009
18 weeks post op, down 15 lbs! Woo hoo!
It seems to me like it's taken a long time to lose that much, but at least I am losing now!
It's been a long time since I updated my blog. I really didn't feel like it, and it seems like nothing much changes. You just feel bad, waiting to feel better. LOL! I was doing really good, then hit a rough patch when all of my hormones tanked. That started around 4 weeks post op, but took a while to get bad and for me to realize what was happening. We've got that straightened out pretty good now!
Judy, if you read this, tell me again what program works with these blogs that lets us arrange our pictures better? I thought I had it bookmarked, but can't find it. I'll add pictures to this post, but this blog always messes them up!
I'm down to 12.5 mg. of hydrocortisone. That's pretty low for someone with no adrenals. We figured out why some of us can go lower though. Estrogen levels affect it a lot. I'm on estrogen now, and I don't need as much hydro as I did with hardly any estrogen in my body!
Here's the deal for me. If I'm on more than 12.5 mg., I don't feel any kind of withdrawal. I feel pretty good, and I don't lose weight. At 12.5 mg., I'm losing weight slowly, and I hurt some. Not super bad, but like I did when I was on the Keto (the drug I took before surgery to lower my cortisol). I feel the arthritis in my neck and my bones in my hands hurt and my shoulders hurt. I get achy all over sometimes, but those are the worst places.
It's hard after surgery, in a different way. People ask me how I'm doing. They expect me to say I'm doing great. In one way, I am. I feel that I am doing great for the type of surgery I've had, and compared to what some of my fellow Cushie's go through, I AM doing great. If I don't say I'm felling great, I think that they think it was a failed surgery, and it wasn't. It's just that it takes time to heal and get better, and with this weird disease, part of getting better is feeling worse (as if that were even possible). On the other hand, if I tell people I'm doing great or I'm feeling great, they think everything is back to normal, and it's not. Then they don't understand when I still can't do stuff, or be in church services, etc. Now I'm rid of Cushing's, but I will forever have Addison's. That involves fatigue, weakness, etc. You can feel totally fine one minute, and the next, you HAVE to lay down. Those things come on suddenly, without warning sometimes. I feel 100% better than I did with Cushing's, but not 100% like a normal person. All in all, I feel pretty good, considering, but I have to be honest and not minimize that there are also rough patches. I'm just an optimistic person and I'm thrilled with the progress I've made. I don't know if 100% for me will ever be 100% like I was never sick. I highly doubt it. I had symptoms for 15 yrs. Anyway, here are some recent pics.
Sunday, July 26, 2009
My head is out of the sand, and I don't want to do this!
I took my oldest daughter to her pediatrician the other day. She had fallen on the cement right before I had surgery, and hurt her knee. It was still bothering her some, so we had him check it out. That will just take time to fully heal.
While we were there, she asked me if she should tell him that she can't smell. I told her to mention it to him because we always forget to tell him that. She told him and he said, "HMMM!" He's never had a pediatric patient with that disorder (I forget the correct name, but I'm sure I'll get familiar with it) and he said one of the causes is a tumor pressing on one of the cranial nerves that makes us smell. So, he thinks she needs to see a neurologist. Since he said that, I said, "I also think she has something endocrine going on. She has the brown neck, elbows, knuckles, stretch marks, weight gain..." He knows all of my kids. We've been going to him for years. He knows she is different than the others. At least the 3 younger ones. He also knows I had Cushing's, so he said he thinks she needs to get checked out and see an Endocrinologist too. He's sending referrals into Children's, but I know she is not florid. If she has Cushing's, she is cyclical, and that will get us nowhere at Children's. I'm going to see if my endo takes her insurance and if we can get the referral to him instead.
I just want to stick my head back in the sand! I don't want to do this. I don't want to deal with this. I've seen it for years, and my husband commented once, before I was ever diagnosed, "Whatever you have, she has it too."
To top it all off and make matters worse, all of the rest of my hormones have taken their final bow. I'm replacing them now, but I just started that, and I just feel emotional. I feel like crying for no reason, or I feel grouchy with everyone, for no reason. I hate hormones! Why didn't they call them horrible moans? Anyway, add on the news of Ciera needing to test, that really makes me want to cry. I've known it for a long time, I just didn't want to deal with it. I've been in denial about it.
While we were there, she asked me if she should tell him that she can't smell. I told her to mention it to him because we always forget to tell him that. She told him and he said, "HMMM!" He's never had a pediatric patient with that disorder (I forget the correct name, but I'm sure I'll get familiar with it) and he said one of the causes is a tumor pressing on one of the cranial nerves that makes us smell. So, he thinks she needs to see a neurologist. Since he said that, I said, "I also think she has something endocrine going on. She has the brown neck, elbows, knuckles, stretch marks, weight gain..." He knows all of my kids. We've been going to him for years. He knows she is different than the others. At least the 3 younger ones. He also knows I had Cushing's, so he said he thinks she needs to get checked out and see an Endocrinologist too. He's sending referrals into Children's, but I know she is not florid. If she has Cushing's, she is cyclical, and that will get us nowhere at Children's. I'm going to see if my endo takes her insurance and if we can get the referral to him instead.
I just want to stick my head back in the sand! I don't want to do this. I don't want to deal with this. I've seen it for years, and my husband commented once, before I was ever diagnosed, "Whatever you have, she has it too."
To top it all off and make matters worse, all of the rest of my hormones have taken their final bow. I'm replacing them now, but I just started that, and I just feel emotional. I feel like crying for no reason, or I feel grouchy with everyone, for no reason. I hate hormones! Why didn't they call them horrible moans? Anyway, add on the news of Ciera needing to test, that really makes me want to cry. I've known it for a long time, I just didn't want to deal with it. I've been in denial about it.
Friday, July 17, 2009
Zane’s 5th birthday
Zane had a fun birthday. He had been telling my cousin he wanted a Spiderman web shooter, and he’d been telling me he wanted a Nerf blaster. Before, it was a tool set. I seen some nice tool sets back in March, so I picked up his gift early. He’d forgotten about wanting tools by this time.
I got him 2 tool sets. One had the regular stuff like screw drivers, wrenches, etc. The other had a screw gun, flash light, level, etc. My cousin made him a shirt (she works at a t-shirt place) that said, “Dad’s helper”
and she made one for Carrington that said, “Dad ’s other helper”.
She also got him some work gloves and candy.
At the end of the day he said, “I got everything I wanted!” LOL! He’d already forgotten that he didn’t get ANYTHING he wanted, just recently! Here are some cute pics. He had his safety goggles on before some of the pics and they left a red mark on his forehead and cheeks.
He was thrilled with his cake. It was actually a bunch of cupcakes together. It had a transformer on top. He was so excited about that!
Love those goggle marks! LOL!
Thursday, July 16, 2009
8 weeks post op and new pics
I haven't really noticed looking a lot different, but I have seen many changes as in how I feel. I do notice my clothes fit looser and I can wear things I couldn't wear before my BLA. I've taken new pics in the same dress I wore before my pit surgery. I forgot to take pics right before my BLA, but I was back up to the same weight as I was for the pit surgery, so it's comparable.
I don't like how this program puts pictures in. I can never get them to go where I want them on the page. Anyway, the new pics are with the straight hair, and the old pics are with the frizzy hair. That is the one thing I've seen a huge change in, my hair! It looks much healthier now. It's so shiny. I don't have any shine spray in my hair in these pics!
I don't have bangs in these pictures either. Those are all of my new hairs growing in! People have mentioned that my hair is getting thicker! I pulled all of the new hairs down and curled them with the straightening iron so you could see how many there are and how long they are!
I've been alternating doses of hydro from 22.5 mg. to 20 mg. every other day. I'm weaning down to 20 mg. It's easier on the body to alternate doses every other day and ease your body into it! It works good for me!
Everything is going good. I wish I had even more energy. I do have more than I had before surgery, that's for sure. I still don't have enough as far as I'm concerned. My body is still healing, so it's still slow going. I hate getting worn out after doing a day of anything, or doing much of anything at all, but that's just the way it is right now. I'm still happy with my choice to have a BLA, and I feel so much better than I did with Cushing's!
Monday, July 6, 2009
Another example of why it's so important to get diagnosed as soon as we can!
Monday, July 6, 2009
Accidental death verdict on 40-year-old mum
Published Date: 03 July 2009 By Garth ApThomas
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.
A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.
The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.
Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.
Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.
The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.
Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.
She had been given a scan involving the pituitary and there was no evidence of a tumour.
It transpired the post-mortem had found Mrs Richardson did have a tumour, which had experienced bleeding.
Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.
Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.
Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.
Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.
He said that with hindsight the only potential other avenue may have been if she had been given steroids.
But Dr Stanaway stressed he doubted this would have been successful, emphasising Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.
Recording his verdict of accidental death Mr Gittins emphasised: "This is not an indication of responsibility, blame or judgement.
"That is not my jurisdiction.
My very sincere condolences go to the family."
From http://www.eveningleader.co.uk/news/Accidental-death-verdict-on-40yearold.5426530.jp
Thursday, July 2, 2009
6 weeks post op
I'm still feeling pretty good. I'm still not losing weight. I lost some with one of my weans, but stopped. I've weaned again, and now I'm on 20 mg. total for the day. My only "complaint" is that I am tired a lot. I suppose that's pretty normal for 6 weeks post op. If I get up early in the morning, then I need a nap in the late morning, or afternoon to make it all day. Or, if I just don't get up until late morning or early noon, I can usually go all day then.
I'm on a full pill of florinef now. I'm totally off of the BP meds. I have been for a while. My BP is doing good. Now I just have to watch that it doesn't go too low. It was going lower than it should, so I went on a full pill of florinef. Decreasing my hydro this last time made my bp drop more. I also ordered some salt pills. Those should help a lot too!
I've had a lot of headaches lately. I wasn't sure what from. I needed adjusted at the chiropractor, so I thought maybe that was it. That didn't fix it. It's not my BP. My sodium was on the lower end of normal last week, so I wondered if my sodium was dropping too much. Today, I ate a dill pickle and it went away for a while. It came back later, so I ate another dill pickle and it went away again. It's coming back. That makes me think it's my sodium dropping too low. It could also be causing my tiredness.
I feel 100% better than I did with Cushing's, but I don't feel 100% normal, if that makes sense. I don't know if I ever will. I had Cushing's for a really long time. At least since 1992-1994. That's when all of my symptoms began. I know I'm only 6 weeks post op, and it will take a year or two to get to the best that I will be. In some ways though, I feel like things will never be the same. That's ok, though. I'll take my new normal and be happy it doesn't include Cushing's!
I went to calling hours for a friend's father today. When I was getting ready, I had to check the time to see when my medicine was due, make sure I had my medicine in my purse with me, etc. I thought, "What a pain! And, and I'm going to have to do this the rest of my life!" But then I quickly thought, "Oh well, it's a small price to pay to get rid of Cushing's!" I don't think there are enough words to totally capture what it feels like to live one day with Cushing's in your body. It's horrid!
Anyway, the other thing I was going to say was that while I was at the calling hours, standing in line, I felt a bit funny. I don't know what it was. Kind of light headed maybe. I'm not sure. Those things just come on suddenly. I had been totally fine before that. You never know when stuff like that will happen. That's the pain of Addison's disease! I was fine, and it passed. If I felt much worse, I would have sat down. Those kinds of things make me think that I'll probably never feel 100% normal again. I'll always have Addison's now. I'll take it though! It beats Cushing's any day! I'm forever an optimist! LOL! Can you tell? Even as bad as Cushing's is, and I'm not downplaying it at all, I still think there are things in life that are worse, and I'm thankful I didn't have to deal with those other things instead! Cushing's is curable, and some diseases are not. I'm thankful I had a disease that was curable. There are always things to be thankful for, even in the worst of times!
I'm on a full pill of florinef now. I'm totally off of the BP meds. I have been for a while. My BP is doing good. Now I just have to watch that it doesn't go too low. It was going lower than it should, so I went on a full pill of florinef. Decreasing my hydro this last time made my bp drop more. I also ordered some salt pills. Those should help a lot too!
I've had a lot of headaches lately. I wasn't sure what from. I needed adjusted at the chiropractor, so I thought maybe that was it. That didn't fix it. It's not my BP. My sodium was on the lower end of normal last week, so I wondered if my sodium was dropping too much. Today, I ate a dill pickle and it went away for a while. It came back later, so I ate another dill pickle and it went away again. It's coming back. That makes me think it's my sodium dropping too low. It could also be causing my tiredness.
I feel 100% better than I did with Cushing's, but I don't feel 100% normal, if that makes sense. I don't know if I ever will. I had Cushing's for a really long time. At least since 1992-1994. That's when all of my symptoms began. I know I'm only 6 weeks post op, and it will take a year or two to get to the best that I will be. In some ways though, I feel like things will never be the same. That's ok, though. I'll take my new normal and be happy it doesn't include Cushing's!
I went to calling hours for a friend's father today. When I was getting ready, I had to check the time to see when my medicine was due, make sure I had my medicine in my purse with me, etc. I thought, "What a pain! And, and I'm going to have to do this the rest of my life!" But then I quickly thought, "Oh well, it's a small price to pay to get rid of Cushing's!" I don't think there are enough words to totally capture what it feels like to live one day with Cushing's in your body. It's horrid!
Anyway, the other thing I was going to say was that while I was at the calling hours, standing in line, I felt a bit funny. I don't know what it was. Kind of light headed maybe. I'm not sure. Those things just come on suddenly. I had been totally fine before that. You never know when stuff like that will happen. That's the pain of Addison's disease! I was fine, and it passed. If I felt much worse, I would have sat down. Those kinds of things make me think that I'll probably never feel 100% normal again. I'll always have Addison's now. I'll take it though! It beats Cushing's any day! I'm forever an optimist! LOL! Can you tell? Even as bad as Cushing's is, and I'm not downplaying it at all, I still think there are things in life that are worse, and I'm thankful I didn't have to deal with those other things instead! Cushing's is curable, and some diseases are not. I'm thankful I had a disease that was curable. There are always things to be thankful for, even in the worst of times!
Wednesday, June 17, 2009
Doing fun stuff in life again!
We went to a friend's house yesterday and went swimming all day! We had a blast! My poor kids have not gotten to do anything fun for so long because I was so sick! They were exhausted! We came home and ate supper, and the 3 oldest passed out early, like right after supper!
Zane is going to be 5 next month. He was the only one who could not stand up in the water and touch bottom. At first, he was scared! He had on a life jacket and noodles, but he was scared. Well, it didn't take long before he was jumping in and going down the slide! He kept saying he was gonna "sunk" or "get sunked". LOL! None of the kids know how to swim. Carrington seemed to think he could just do what his little friend does, who knows how to swim really well. So, Carrington just jumps in, doesn't know what he's doing, then he panicked and didn't realize he could stand up in the water. I thought he was going to drink half of the pool yesterday! He would get on this alligator raft, and always end up flipping it, or get flipped, and try to drown himself again! They were getting pretty good with all of it by the end of the day. The older kids were actually learning to swim some.
We left my friends house and went home for supper. Andy made baked potatoes and hot dogs/brats on the grill. Then, we ran out to some garden centers after supper to find some vegetables and fruit for the late garden we are putting in. Then, I came home and looked online for places to stay for our planned vacation. It is never far from my mind how much I am able to do, and couldn't have done half of that in one day, before surgery. I'm not super woman again. It catches up with you. I started feeling sick to my stomach later. I was up past my bedtime, looking on the computer for places to stay on vacation. I had to just go to bed. I know I'm going to be really tired the next few days, but those days I get to do a lot, they feel so awesome! One thing I find myself doing, and that I've always liked about myself, is laughing! My friend and I were talking about people we went to school with, and old memories and we laughed and laughed! I find myself laughing a lot more these days. I LOVE to laugh! It feels so good! When you are sick and you feel miserable, even the things that are funny, just don't make you laugh like they do when you are not sick! There is a lightheartedness that comes with feeling well. I'm glad I've found that again!
Zane is going to be 5 next month. He was the only one who could not stand up in the water and touch bottom. At first, he was scared! He had on a life jacket and noodles, but he was scared. Well, it didn't take long before he was jumping in and going down the slide! He kept saying he was gonna "sunk" or "get sunked". LOL! None of the kids know how to swim. Carrington seemed to think he could just do what his little friend does, who knows how to swim really well. So, Carrington just jumps in, doesn't know what he's doing, then he panicked and didn't realize he could stand up in the water. I thought he was going to drink half of the pool yesterday! He would get on this alligator raft, and always end up flipping it, or get flipped, and try to drown himself again! They were getting pretty good with all of it by the end of the day. The older kids were actually learning to swim some.
We left my friends house and went home for supper. Andy made baked potatoes and hot dogs/brats on the grill. Then, we ran out to some garden centers after supper to find some vegetables and fruit for the late garden we are putting in. Then, I came home and looked online for places to stay for our planned vacation. It is never far from my mind how much I am able to do, and couldn't have done half of that in one day, before surgery. I'm not super woman again. It catches up with you. I started feeling sick to my stomach later. I was up past my bedtime, looking on the computer for places to stay on vacation. I had to just go to bed. I know I'm going to be really tired the next few days, but those days I get to do a lot, they feel so awesome! One thing I find myself doing, and that I've always liked about myself, is laughing! My friend and I were talking about people we went to school with, and old memories and we laughed and laughed! I find myself laughing a lot more these days. I LOVE to laugh! It feels so good! When you are sick and you feel miserable, even the things that are funny, just don't make you laugh like they do when you are not sick! There is a lightheartedness that comes with feeling well. I'm glad I've found that again!
Saturday, June 13, 2009
Picture time!
This picture was taken today. I'm 3 weeks and 3 days post op.
These are a bit messed up and out of order. I can't get them to load right. Sorry! This one was in the first week post op, after my BLA. I was on 50 mg. in the coral and white striped shirt.
Another one from today.
Another one at about 1 week post op BLA.
This was my surgeon, Dr. Chiang, from Brookfield, WI. He is an awesome surgeon! Besides his surgical skills, he's a very kind man!
This is a picture from before surgery. I was on the Ketoconazole at this point, but I still had "high" times. This shows how red my skin would get.
This was one of the last pics I have from before my BLA. I'm not sure of the time frame from this picture until surgery.
This shows how red my face and neck would get, when I still had Cushing's. I knew I had a recurrence when this stuff was going on!
My big ole fat face, with Cushing's, before surgery.
I finally got my husband to show me how to get my pics off of my camera. He had changed the program a bit, and I had to learn again. I don't like the layout the blog uses. It makes it hard (I think). Maybe it's just smarter than me! LOL!
You can see in the pictures that my face has lost most of the redness now. It has started slimming down, even though I'm still on 35 mg. of hydro. That's a pretty high dose, and I'm still seeing improvements! My lips use to be really red all the time. Now, they look normal again. Sort of pale in comparison. I think you can see how good I feel, just looking at my current pics. I feel so much better. I still get wiped out easily. I did a lot yesterday, and today, I slept all day long! Each day is still better, and that's so exciting!
These are a bit messed up and out of order. I can't get them to load right. Sorry! This one was in the first week post op, after my BLA. I was on 50 mg. in the coral and white striped shirt.Another one from today.Another one at about 1 week post op BLA.This was my surgeon, Dr. Chiang, from Brookfield, WI. He is an awesome surgeon! Besides his surgical skills, he's a very kind man!This is a picture from before surgery. I was on the Ketoconazole at this point, but I still had "high" times. This shows how red my skin would get.This was one of the last pics I have from before my BLA. I'm not sure of the time frame from this picture until surgery.This shows how red my face and neck would get, when I still had Cushing's. I knew I had a recurrence when this stuff was going on!My big ole fat face, with Cushing's, before surgery.I finally got my husband to show me how to get my pics off of my camera. He had changed the program a bit, and I had to learn again. I don't like the layout the blog uses. It makes it hard (I think). Maybe it's just smarter than me! LOL!
You can see in the pictures that my face has lost most of the redness now. It has started slimming down, even though I'm still on 35 mg. of hydro. That's a pretty high dose, and I'm still seeing improvements! My lips use to be really red all the time. Now, they look normal again. Sort of pale in comparison. I think you can see how good I feel, just looking at my current pics. I feel so much better. I still get wiped out easily. I did a lot yesterday, and today, I slept all day long! Each day is still better, and that's so exciting!
Friday, June 12, 2009
And the wean goes on!
I went to see my endo yesterday. I get to wean again, and again, and again. LOL! As long as I am tolerating it, I can go down fairly quickly. I'm going to end up cutting out my middle dose. I'll wean down to 25 mg. a day, and do more lab work and see where all of it is, and see if I need to keep going down.
He had me cut my Florinef in half, at least for now. I have slight swelling. My bp was back up, so we know it's time for a wean. The higher dose of hydro can be causing some of my swelling too. He told me to watch my bp to figure out if I need more hydro or not. If I get dizzy from sitting up, or standing, then I need to take more Florinef.
It was a good visit. I got to ask about some other Cushie friends. I asked if he would be willing to see them, and help them out. Of course, he said yes! He is just amazed at how doctors are not helping us! There are plenty of us out there who are willing to be diagnosed! We are willing to do the testing, even though it is such a pain! We just want to be better. Some doctors have made remarks to patients saying, "Why do you push for this? Why do you want this disease?" How stupid is that? Who wants a disease? It's not that we WANT Cushing's, we just want to get the proper diagnosis and get FIXED! That really shouldn't be that hard to understand! I guess it's just the fact that unless you live with it, and you know how it feels, you don't really understand! We are not a group of people who go looking for diseases to have. We are sick people who are looking for answers as to what we have! Big difference! I'm so thankful I have found a doctor on this side of the US to help me and others like me! They are too few and far between!
My husband commented last night that my skin has definitely changed. It's much softer now. My cousin keeps commenting that she can't believe how "pale" I am! LOL! She is so use to seeing my face always bright red, and now the redness is gone, or mostly gone. It started looking a bit red again in the past few days, since I need to wean again, but nothing like it did before! People have commented on my face slimming down too. I don't notice my heart any more. I use to always be aware of it beating, or skipping beats, fluttering, etc. Now, it's so calm, I don't even notice it. There are just little things like that, that nobody can see, that I notice, and things like that make me feel so much better!
He had me cut my Florinef in half, at least for now. I have slight swelling. My bp was back up, so we know it's time for a wean. The higher dose of hydro can be causing some of my swelling too. He told me to watch my bp to figure out if I need more hydro or not. If I get dizzy from sitting up, or standing, then I need to take more Florinef.
It was a good visit. I got to ask about some other Cushie friends. I asked if he would be willing to see them, and help them out. Of course, he said yes! He is just amazed at how doctors are not helping us! There are plenty of us out there who are willing to be diagnosed! We are willing to do the testing, even though it is such a pain! We just want to be better. Some doctors have made remarks to patients saying, "Why do you push for this? Why do you want this disease?" How stupid is that? Who wants a disease? It's not that we WANT Cushing's, we just want to get the proper diagnosis and get FIXED! That really shouldn't be that hard to understand! I guess it's just the fact that unless you live with it, and you know how it feels, you don't really understand! We are not a group of people who go looking for diseases to have. We are sick people who are looking for answers as to what we have! Big difference! I'm so thankful I have found a doctor on this side of the US to help me and others like me! They are too few and far between!
My husband commented last night that my skin has definitely changed. It's much softer now. My cousin keeps commenting that she can't believe how "pale" I am! LOL! She is so use to seeing my face always bright red, and now the redness is gone, or mostly gone. It started looking a bit red again in the past few days, since I need to wean again, but nothing like it did before! People have commented on my face slimming down too. I don't notice my heart any more. I use to always be aware of it beating, or skipping beats, fluttering, etc. Now, it's so calm, I don't even notice it. There are just little things like that, that nobody can see, that I notice, and things like that make me feel so much better!
Friday, June 5, 2009
I'm a Weaner!
I'm a weaner! I started my first wean this week, on Wed. I'm expecting tomorrow, actually later today, to be a bad day for me. I felt nauseated off and on for a while, yesterday, but not real bad. It passed and I was fine the rest of the day. The weans are not fun to go through. Hopefully, it won't be too bad though. Doc H. said I could go down 10 mg., and stay at 40 mg. until I see him next week. Then, he will go over my weaning protocol. Maybe I can go down 10 mg. more each week, if I can tolerate it. I'll see what he says. I know Dr. F. is having his patients leave the hospital on only 25 mg. I left on 50 mg. I don't think I needed that much, but at times, I think I did, and I'm glad I had it.
I gained 15 lbs. after surgery, by the time I got home. Now, I've lost 5 lbs. of that. I will be glad when I at least get back to my pre-op weight.
I'm feeling pretty good. I'm still sore some, but each day is still getting better. Now, I'm off to bed! It's been a long day! I should have been in bed hours ago!
I gained 15 lbs. after surgery, by the time I got home. Now, I've lost 5 lbs. of that. I will be glad when I at least get back to my pre-op weight.
I'm feeling pretty good. I'm still sore some, but each day is still getting better. Now, I'm off to bed! It's been a long day! I should have been in bed hours ago!
Tuesday, June 2, 2009
New milestone
So many things we do, each day in life, we don't give a second thought. We take it for granted, because we have always been able to do it. You don't realize it until it is taken away from you.
This morning, I read 2 chapters in a book! Big deal, right? Yes, it was! When you have Cushing's, you get this foggy brain, and there is really no other way to describe it other than foggy brain. That's what we all call it. You can't concentrate, you forget things very easily, and your comprehension is down.
I've always loved to read! I had noticed it was hard for me to read things. I had to really concentrate, and even then, it was hard to comprehend what I was reading sometimes. Some days were better than others, but overall, it was hard, always. When I went to California for testing, in 2007, I bought a new book to take with me to read. I had not read a book for a long time. For the most part, I'm just too busy, but it was also more than that. I had gradually lost interest, and really had not realized it for a while. When I tried to read that book, I only got to about page 3, and even then, I had to read it over and over, and realized I still was not comprehending what I was reading. My mind was thinking of anything and everything else while I was reading! I suppose it's similar to what an ADHD person experiences. I gave up on the book. I tried once or twice after that, and the same thing happened.
So, this morning, I got up to take my medicine, and I was hungry, so I got a bite to eat, and I'm awake for a while. I read my Bible, and then I was looking in my end table, and found that book. I decided to give it a try. I read to chapter 3! Not page 3, CHAPTER 3! I remember what I read. It was not totally without difficulty. I had to focus to learn who the characters were, and how they related to each other, but overall, I got it, and it stuck! Before, I just couldn't make myself do it!
I've never considered myself a genius, but I always got good grades in school. I have always enjoyed learning. Our entire life is a learning experience, and I feel like a sponge, trying to soak all of it in! It's very hard for people with Cushing's because you feel like you've been "dumbed down" for a lack of better words. I would always think this must be what it felt like, on some level, for my dad, when he had Alzheimer's. He was a very smart man, and he lost his thinking skills and his ability to comprehend. I know it was very frustrating for him, and scary. I felt the same way, until I realized mine was from Cushing's, and I knew once I got rid of the Cushing's, I'd get rid of my cognative problems.
It became very hard to spell. I was always a good speller, before Cushing's. Suddenly, I would spell words, and they didn't look right to me. I'd try a different spelling variation, and it didn't look right either. I'm talking about words we have known all of our life, and should come easily to us. You look at it and it looks like a foreign language to you. That's just so bizarre, and until you experience it, you probably can't comprehend. We end up having to think of another word, that means the same thing as the one we want to spell, but pick one we do know how to spell. It is very frustrating! When I get to typing really fast, I sometimes type words completely backwards, or I scramble the letters and make a whole new word. I usually see my mistakes, and correct them before I hit send, or publish, but I still miss a few! In speaking, I've created new words that don't exist. They just come out of your mouth without thinking about it. The excess cortisol does something to our brains, plus, having a pituitary tumor could have something to do with it!
Maybe that will help some of you to realize how much joy there is in reading just 2 chapters in a book! Try to never take the small things in life for granted!
This morning, I read 2 chapters in a book! Big deal, right? Yes, it was! When you have Cushing's, you get this foggy brain, and there is really no other way to describe it other than foggy brain. That's what we all call it. You can't concentrate, you forget things very easily, and your comprehension is down.
I've always loved to read! I had noticed it was hard for me to read things. I had to really concentrate, and even then, it was hard to comprehend what I was reading sometimes. Some days were better than others, but overall, it was hard, always. When I went to California for testing, in 2007, I bought a new book to take with me to read. I had not read a book for a long time. For the most part, I'm just too busy, but it was also more than that. I had gradually lost interest, and really had not realized it for a while. When I tried to read that book, I only got to about page 3, and even then, I had to read it over and over, and realized I still was not comprehending what I was reading. My mind was thinking of anything and everything else while I was reading! I suppose it's similar to what an ADHD person experiences. I gave up on the book. I tried once or twice after that, and the same thing happened.
So, this morning, I got up to take my medicine, and I was hungry, so I got a bite to eat, and I'm awake for a while. I read my Bible, and then I was looking in my end table, and found that book. I decided to give it a try. I read to chapter 3! Not page 3, CHAPTER 3! I remember what I read. It was not totally without difficulty. I had to focus to learn who the characters were, and how they related to each other, but overall, I got it, and it stuck! Before, I just couldn't make myself do it!
I've never considered myself a genius, but I always got good grades in school. I have always enjoyed learning. Our entire life is a learning experience, and I feel like a sponge, trying to soak all of it in! It's very hard for people with Cushing's because you feel like you've been "dumbed down" for a lack of better words. I would always think this must be what it felt like, on some level, for my dad, when he had Alzheimer's. He was a very smart man, and he lost his thinking skills and his ability to comprehend. I know it was very frustrating for him, and scary. I felt the same way, until I realized mine was from Cushing's, and I knew once I got rid of the Cushing's, I'd get rid of my cognative problems.
It became very hard to spell. I was always a good speller, before Cushing's. Suddenly, I would spell words, and they didn't look right to me. I'd try a different spelling variation, and it didn't look right either. I'm talking about words we have known all of our life, and should come easily to us. You look at it and it looks like a foreign language to you. That's just so bizarre, and until you experience it, you probably can't comprehend. We end up having to think of another word, that means the same thing as the one we want to spell, but pick one we do know how to spell. It is very frustrating! When I get to typing really fast, I sometimes type words completely backwards, or I scramble the letters and make a whole new word. I usually see my mistakes, and correct them before I hit send, or publish, but I still miss a few! In speaking, I've created new words that don't exist. They just come out of your mouth without thinking about it. The excess cortisol does something to our brains, plus, having a pituitary tumor could have something to do with it!
Maybe that will help some of you to realize how much joy there is in reading just 2 chapters in a book! Try to never take the small things in life for granted!
Thursday, May 28, 2009
One week, one day post op
I posted this on the Cushing's site, but I'll post it here too for my friends and family and anyone else who reads my blog, but does not see the Cushing's site. Plus, it saves me spoons to just cut and past. That remeinds me, I need to find the "Spoon Theory" and post it on my blog. It's good for everyone to read, so you understand what it's like for someone with a chronic debilitating disease. Anyway, here's my next post.
I'm 1 week and 1 day post op. I had my follow up with Dr. Chiang today. He is THE most awesome doctor I have ever experienced. It's hard to compare. I have had other really great doctors too, and even though I didn't have Dr. McC, I know he is awesome as well. So, I'll just say he is MY most awesome doctor! When we went in, I remembered my camera! I almost forgot to take it with me! I've forgotten each time I've seen Dr. F. and Dr. J. Anyway, today, I had my picture taken with Dr. Chiang. I'll have to put it on here, after I'm home. I will share pics, but I can't right at the moment. First, let me tell you, I'm very emotional after this BLA. It's not depression, or even messed up hormones. It's just the pure realization that I just survived Cushing's, and I'm facing a life full of possibilities again! I'm full of gratitude, relief, hope, joy... hard to put into words. I have felt, emotionally, as if I've been holding my breath the whole journey with Cushing's. We have no guarantees, and we don't know what will happen the next minute. Anyway, I had my husband take the picture, and he took too long. Before he could get it snapped, my eyes started to swell with tears and I told myself I was not gonna cry. Yeah right. That never works! LOL! I didn't break into a full out tear thing just at that moment. We were done with the picture, and Dr. Chiang was chatting with me a few more secs and he asked if I needed anything else from him. I said no, and I just burst into tears and said, "Thank you!" He started chuckling and gave me a big hug and told me I was welcome! What a sweet guy! He's not just a surgeon. He's so humane! Of course we all know he is, but it's just really hard to put it all in words how good he is, in so many ways. Ok, enough of the mushy stuff. My path report was back, and Laverne and Shirley kept somewhat of their girlie figure. They had both gained some weight, but not real bad. Of course, the Keto I took before surgery probably helped to shrink them some. The left one (Laverne) was 7.3 grams. Normal is 4-6, so not too bad. The right one (Shirley) weighed 7.9 g. and had hemmorhaged a bit. It was an area of 1.0 cm at the greatest dimension. No nodules or masses were found in either of the girls. Even though they were not overly abnormal, he said it was still what was needed to get my over production of cortisol stopped. So, I guess maybe both of them had a few too many milk and pepsi's. LOL! This was the aboslute roughest surgery I have ever had. I am guessing that my body always gave me excess cortisol before. Can't do it now! Ha! The other problem is, I have found out with this surgery, more than any other before, I'm allergic to almost ALL of the "good" pain meds. Today, he gave me Demerol. That worked good for me in the hospital. It's just not long acting, and it makes you drowsy (very). However, I need that for better healing. So, Demerol it is. My inscisions all look good. I got my bandages removed today. I'm still so sore, and have some big bruising (I don't know how it compares to others, but it's big to me, LOL!) My weirdest thing is my stomach is numb in the front. He was stumped with that, but I have had at least one other person tell me they had some numbness after their unilateral adrenalectomy. I'm hoping that will come back soon. He thinks it will. Not only is it numb, but it stings because it's not totally numb. It's kind of in that twilight area. I don't know if I've lost any weight or not. At this point, I don't even care. I know it is coming. It is really the least of my thoughts. I'm just absolutely about to burst at the seams for the way I feel. I don't know how to divide the mental aspect from the physical aspect. They go hand in hand somwhat. I'm sore, that's for sure, and in that reguard, I don't feel too well yet. The first few days were unbelievably hard. I assume that's mostly because of my pain med issues, and my enormous gas bubbles in my shoulders. Those things will bring you to tears faster than anything! Each day gets better. Melly told me (before surgery) it's like this. You get about a teaspoon more of energy each day, and I think that is the most accurate way to describe it! Each day I am stronger, I feel better, I have a bit more energy, but the blessed part of it is, it lasts all day (for me anyway). When I was cycling, I was all over the place all day long. I might feel better for a little bit, but lose it quickly. Now, I'm not, I'm constant! Each night I go to bed, I tell myself that tomorrow I'm gonna feel even better, and I do! I don't just wish and hope for it. I know it's a fact and it is going to happen. I know there will be bad days. I still have to wean, and of course we are not immune to flu and such, but over all, I know I'm getting better, and it's only going to keep improving! I have joy again! That zest for life. The first few days, I can't say that was there. It was just too rough to deal with pain and getting to the toilet and getting any sleep. When I had Cushing's, I went to bed knowing tomorrow would be a bad day, I just didn't know how bad. It might be "better", but my "better" was just to a lesser degree of bad. What I have now is awesome! I have some improvements already. My skin tone is better. Not so red, bumps disappearing. Sleeping better, even with the pain, no jolting awake, no HELLFIRE racing up my throat and choking me in the night, improved blood pressure (even on my hydro!), my face has slimmed some (I think), my husband says my stomach is hanging more (meaning it's shrinking and dropping further, it's a compliment, I promise!)... I'm sure there are others I'm not thinking of right now. I'm currently on 50 mg. of hydro. Dr. Holmes will start my wean when I see him for my follow up. I take 20 mg. at 5 am, 20 mg. at 11 am, and 10 mg. at 5 pm. It's my own dosing schedule. It works good for me. The florinef has not made me swell bad, so far. I'm not nauseated, and struggling with that yet, thankfully. You know me, I'm gonna get that tape measure out and the camera, all through this journey back to health! I'm forever grateful to MaryO for supplying a means for me to have access to wonderful information, and finding friends I would have otherwise never known. I'm thankful for each of you. For being a voice on the other end of the phone, a cheerleader on the down days, when my posts were not so up beat. I love my Cushing's family with all my heart! You all are so dear to me! See... I'm getting mushy again! I have no real words, enough, to thank my wonderful husband for sticking by me through all of this! He gets it, and he helps me! Most of all, I'm so very thankful to God, for seeing me through each day, one day at a time, and getting me to where I am now.
I'm 1 week and 1 day post op. I had my follow up with Dr. Chiang today. He is THE most awesome doctor I have ever experienced. It's hard to compare. I have had other really great doctors too, and even though I didn't have Dr. McC, I know he is awesome as well. So, I'll just say he is MY most awesome doctor! When we went in, I remembered my camera! I almost forgot to take it with me! I've forgotten each time I've seen Dr. F. and Dr. J. Anyway, today, I had my picture taken with Dr. Chiang. I'll have to put it on here, after I'm home. I will share pics, but I can't right at the moment. First, let me tell you, I'm very emotional after this BLA. It's not depression, or even messed up hormones. It's just the pure realization that I just survived Cushing's, and I'm facing a life full of possibilities again! I'm full of gratitude, relief, hope, joy... hard to put into words. I have felt, emotionally, as if I've been holding my breath the whole journey with Cushing's. We have no guarantees, and we don't know what will happen the next minute. Anyway, I had my husband take the picture, and he took too long. Before he could get it snapped, my eyes started to swell with tears and I told myself I was not gonna cry. Yeah right. That never works! LOL! I didn't break into a full out tear thing just at that moment. We were done with the picture, and Dr. Chiang was chatting with me a few more secs and he asked if I needed anything else from him. I said no, and I just burst into tears and said, "Thank you!" He started chuckling and gave me a big hug and told me I was welcome! What a sweet guy! He's not just a surgeon. He's so humane! Of course we all know he is, but it's just really hard to put it all in words how good he is, in so many ways. Ok, enough of the mushy stuff. My path report was back, and Laverne and Shirley kept somewhat of their girlie figure. They had both gained some weight, but not real bad. Of course, the Keto I took before surgery probably helped to shrink them some. The left one (Laverne) was 7.3 grams. Normal is 4-6, so not too bad. The right one (Shirley) weighed 7.9 g. and had hemmorhaged a bit. It was an area of 1.0 cm at the greatest dimension. No nodules or masses were found in either of the girls. Even though they were not overly abnormal, he said it was still what was needed to get my over production of cortisol stopped. So, I guess maybe both of them had a few too many milk and pepsi's. LOL! This was the aboslute roughest surgery I have ever had. I am guessing that my body always gave me excess cortisol before. Can't do it now! Ha! The other problem is, I have found out with this surgery, more than any other before, I'm allergic to almost ALL of the "good" pain meds. Today, he gave me Demerol. That worked good for me in the hospital. It's just not long acting, and it makes you drowsy (very). However, I need that for better healing. So, Demerol it is. My inscisions all look good. I got my bandages removed today. I'm still so sore, and have some big bruising (I don't know how it compares to others, but it's big to me, LOL!) My weirdest thing is my stomach is numb in the front. He was stumped with that, but I have had at least one other person tell me they had some numbness after their unilateral adrenalectomy. I'm hoping that will come back soon. He thinks it will. Not only is it numb, but it stings because it's not totally numb. It's kind of in that twilight area. I don't know if I've lost any weight or not. At this point, I don't even care. I know it is coming. It is really the least of my thoughts. I'm just absolutely about to burst at the seams for the way I feel. I don't know how to divide the mental aspect from the physical aspect. They go hand in hand somwhat. I'm sore, that's for sure, and in that reguard, I don't feel too well yet. The first few days were unbelievably hard. I assume that's mostly because of my pain med issues, and my enormous gas bubbles in my shoulders. Those things will bring you to tears faster than anything! Each day gets better. Melly told me (before surgery) it's like this. You get about a teaspoon more of energy each day, and I think that is the most accurate way to describe it! Each day I am stronger, I feel better, I have a bit more energy, but the blessed part of it is, it lasts all day (for me anyway). When I was cycling, I was all over the place all day long. I might feel better for a little bit, but lose it quickly. Now, I'm not, I'm constant! Each night I go to bed, I tell myself that tomorrow I'm gonna feel even better, and I do! I don't just wish and hope for it. I know it's a fact and it is going to happen. I know there will be bad days. I still have to wean, and of course we are not immune to flu and such, but over all, I know I'm getting better, and it's only going to keep improving! I have joy again! That zest for life. The first few days, I can't say that was there. It was just too rough to deal with pain and getting to the toilet and getting any sleep. When I had Cushing's, I went to bed knowing tomorrow would be a bad day, I just didn't know how bad. It might be "better", but my "better" was just to a lesser degree of bad. What I have now is awesome! I have some improvements already. My skin tone is better. Not so red, bumps disappearing. Sleeping better, even with the pain, no jolting awake, no HELLFIRE racing up my throat and choking me in the night, improved blood pressure (even on my hydro!), my face has slimmed some (I think), my husband says my stomach is hanging more (meaning it's shrinking and dropping further, it's a compliment, I promise!)... I'm sure there are others I'm not thinking of right now. I'm currently on 50 mg. of hydro. Dr. Holmes will start my wean when I see him for my follow up. I take 20 mg. at 5 am, 20 mg. at 11 am, and 10 mg. at 5 pm. It's my own dosing schedule. It works good for me. The florinef has not made me swell bad, so far. I'm not nauseated, and struggling with that yet, thankfully. You know me, I'm gonna get that tape measure out and the camera, all through this journey back to health! I'm forever grateful to MaryO for supplying a means for me to have access to wonderful information, and finding friends I would have otherwise never known. I'm thankful for each of you. For being a voice on the other end of the phone, a cheerleader on the down days, when my posts were not so up beat. I love my Cushing's family with all my heart! You all are so dear to me! See... I'm getting mushy again! I have no real words, enough, to thank my wonderful husband for sticking by me through all of this! He gets it, and he helps me! Most of all, I'm so very thankful to God, for seeing me through each day, one day at a time, and getting me to where I am now.
Tuesday, May 26, 2009
6 days post op
Today is a better day. It's pretty exciting to go to bed at night, and know that the next day you wake up, you are going to feel even better!
Last night, my stomach was so sore... I can't even describe it, really. My voice was shaking as I was trying to get myself laid in bed, and tell Andy how bad it hurt! If I lay on the one side, it's not bad, but you know, it is not comfortable to lay in one spot all the time. If I try to turn over, it hurts! I feel all of the organs inside my body, shift. They get stuck on my ribs and such, and it is the grossest and most painful feeling.
I have pain pills, but I don't take them often. Pain pills do not seem to agree with me too well. They do help, so I do take them occasionally. I usually reserve it for bedtime, or naps. When I woke, to take my morning medicine, I decided I would take another pain pill before going back to bed. I decided to check for messages on the computer first. I was sending a message to someone, and started feeling really light headed and faint. My hearing on the left side was muffled or gone. I had to hurry up and get laid back down. Some pain meds make me itch. This one does a little bit, but not as bad as the Percocet. I really liked the Percocet, other than itching. It never made me feel dizzy or any of this stuff. Tylenol 3's make me feel light headed and icky. The crazy thing with this Vicodin is, one time, it will make me a little bit itchy. The next time, it will make me light headed, muffled hearing, etc. I think I have a different reaction to it each new time I take it. I really think Ibuprofen works the best for me. I just don't know if I can take that. It's a blood thinner, and I wouldn't want to start any internal bleeds.
I've had 5 babies, the first 2 with no pain meds, the last 3 with epidurals. I've had a cyst removed from the outside of my ear, a deviated septum fixed, a hysterectomy, and brain surgery. Nothing has hurt me as bad as this! My best guess is that I had excess cortisol all the other times, and that is what helped. At any rate, I'd do it all over again. It's absolutely been worth it. Each day that I feel better, is so exciting.
Last night, my stomach was so sore... I can't even describe it, really. My voice was shaking as I was trying to get myself laid in bed, and tell Andy how bad it hurt! If I lay on the one side, it's not bad, but you know, it is not comfortable to lay in one spot all the time. If I try to turn over, it hurts! I feel all of the organs inside my body, shift. They get stuck on my ribs and such, and it is the grossest and most painful feeling.
I have pain pills, but I don't take them often. Pain pills do not seem to agree with me too well. They do help, so I do take them occasionally. I usually reserve it for bedtime, or naps. When I woke, to take my morning medicine, I decided I would take another pain pill before going back to bed. I decided to check for messages on the computer first. I was sending a message to someone, and started feeling really light headed and faint. My hearing on the left side was muffled or gone. I had to hurry up and get laid back down. Some pain meds make me itch. This one does a little bit, but not as bad as the Percocet. I really liked the Percocet, other than itching. It never made me feel dizzy or any of this stuff. Tylenol 3's make me feel light headed and icky. The crazy thing with this Vicodin is, one time, it will make me a little bit itchy. The next time, it will make me light headed, muffled hearing, etc. I think I have a different reaction to it each new time I take it. I really think Ibuprofen works the best for me. I just don't know if I can take that. It's a blood thinner, and I wouldn't want to start any internal bleeds.
I've had 5 babies, the first 2 with no pain meds, the last 3 with epidurals. I've had a cyst removed from the outside of my ear, a deviated septum fixed, a hysterectomy, and brain surgery. Nothing has hurt me as bad as this! My best guess is that I had excess cortisol all the other times, and that is what helped. At any rate, I'd do it all over again. It's absolutely been worth it. Each day that I feel better, is so exciting.
Sunday, May 24, 2009
Post BLA surgery
I'm 4 days post op, now. Each day is better than the previous, but I can tell it will be slow going. I know some people have said that the BLA surgery is easier for them than their pituitary surgery. My pituitary surgery was a piece of cake. This has been worse for me, by far. I will not lie. This has been the most painful surgery I have ever had. It was worse than my hysterectomy, but that's just me. I suspect that is because I had Cushing's with each of my other surgeries. It would have made my body put out extra steroids. I believe that would have helped me with each surgery or birth, to feel better. Now that Cushing's is gone, I don't have my body putting out extra steroids now.
I'm still on high doses of steroids, so it will be a while before I see a lot of the positive changes. My face is already looking better. I have lost most of the redness and it looks slimmer to me. That is probably all I will see for a while. Right now, I'm on 50 mg. of hydro each day. I will start weaning once I see my endo, which is June 11th. I feel pretty good, so I'm not looking forward to the weaning process. I imagine it will be pretty hard. It's something we have to go through though.
The gas pains you get from being blown up with air are unreal! They lodged in my shoulders, and it felt like severe muscle spasms. I was near tears, and biting my fingers. I'm usually good with pain, but that part was very bad for me. Pain killers don't help that kind of pain. Gas-x does, but you can only take a certain amount of it. They don't give you those at the hospital anyway. Thankfully, those gas pains are mostly gone. I'm still having them some, 4 days post op, but they are much better.
My right side is sore. I finally slept in the bed some. I've spent the first several days sleeping, sitting up on the couch with pillows stuffed all around me. That is not real comfortable, and I can't sleep for long periods of time. Now that I can stretch out in the bed, I'm getting a bit more restful sleep. I still don't sleep for very long stretches of time though.
I have seen definite improvement each day. I know that each day IS better than the one before. It's just going to take a long time to be totally well and healed.
There was a fire alarm that went off in our hotel a few days ago. I was sitting on the couch, taking a nap, and this thing goes off! It was blaring loud and I came straight off of the couch! We left the building. All I had on was my night gown, robe, and socks. We went to McDonalds to pick up some food and took a drive. I think that ate up some of my cortisol pretty quickly, but I did ok. I think the person working the drive thru was wondering why I was not dressed. LOL! If they only knew!
I'm still on high doses of steroids, so it will be a while before I see a lot of the positive changes. My face is already looking better. I have lost most of the redness and it looks slimmer to me. That is probably all I will see for a while. Right now, I'm on 50 mg. of hydro each day. I will start weaning once I see my endo, which is June 11th. I feel pretty good, so I'm not looking forward to the weaning process. I imagine it will be pretty hard. It's something we have to go through though.
The gas pains you get from being blown up with air are unreal! They lodged in my shoulders, and it felt like severe muscle spasms. I was near tears, and biting my fingers. I'm usually good with pain, but that part was very bad for me. Pain killers don't help that kind of pain. Gas-x does, but you can only take a certain amount of it. They don't give you those at the hospital anyway. Thankfully, those gas pains are mostly gone. I'm still having them some, 4 days post op, but they are much better.
My right side is sore. I finally slept in the bed some. I've spent the first several days sleeping, sitting up on the couch with pillows stuffed all around me. That is not real comfortable, and I can't sleep for long periods of time. Now that I can stretch out in the bed, I'm getting a bit more restful sleep. I still don't sleep for very long stretches of time though.
I have seen definite improvement each day. I know that each day IS better than the one before. It's just going to take a long time to be totally well and healed.
There was a fire alarm that went off in our hotel a few days ago. I was sitting on the couch, taking a nap, and this thing goes off! It was blaring loud and I came straight off of the couch! We left the building. All I had on was my night gown, robe, and socks. We went to McDonalds to pick up some food and took a drive. I think that ate up some of my cortisol pretty quickly, but I did ok. I think the person working the drive thru was wondering why I was not dressed. LOL! If they only knew!
Thursday, May 7, 2009
I have a surgery date!
I felt like I was never going to get to my second surgery. I finally have a date of May 20th, at 1:15 pm. I can't wait! I'm so sick and tired of being sick and tired! I feel this surgery is coming none too soon. I hurt so bad, just to sleep. My shoulders have been hurting lately. My hips hurt, right at the joint. My foot hurts, my hands, etc. I feel like I'm falling to pieces. I feel worse this time than I did last, in some ways. In others, I felt worse the first time. This time, my bp has been more stable, and the first time it was a real mess! This time, my sugar has been wacky, and last time it was ok. This is one crazy disease! I just can't wait until it's all over.
Of course, I wonder if it is ever really "over". We have to deal with the aftermath of Cushing's sometimes. The longer you have had it, the more damage it has done to your body. Those high doses of steroids can be masking things you don't even know is there, until your cortisol is normal again. It's not an over night cure. It's more of a process over a year or so, to get back to normal.
Honestly, I just can't imagine what it's like to be normal again. I have not been normal for years. LOL! Seriously! My mind cannot fathom what it feels like to feel good for the majority of the year, and only have a few sick days here and there. Right now, I feel sick the majority of the year, and only have a few good days. It will be such a change. Then there is learning to live life without adrenals. I'll have to learn what my physical limitations are. I use to be superwoman. I use to work, work, work my head off. I'm sure I will have to learn to scale back, even when I feel better, because it eventually catches up with you. It's not just, "Oh, I'm achy and extra tired." When you have no adrenals, overdoing it can land you in the hospital. It will be an adjustment period for quite a while. I'll have to learn how much extra medicine I need to take when I get sick, if I have an extra busy day, etc. Lots to adjust to, but I'm looking forward to all of it!
Of course, I wonder if it is ever really "over". We have to deal with the aftermath of Cushing's sometimes. The longer you have had it, the more damage it has done to your body. Those high doses of steroids can be masking things you don't even know is there, until your cortisol is normal again. It's not an over night cure. It's more of a process over a year or so, to get back to normal.
Honestly, I just can't imagine what it's like to be normal again. I have not been normal for years. LOL! Seriously! My mind cannot fathom what it feels like to feel good for the majority of the year, and only have a few sick days here and there. Right now, I feel sick the majority of the year, and only have a few good days. It will be such a change. Then there is learning to live life without adrenals. I'll have to learn what my physical limitations are. I use to be superwoman. I use to work, work, work my head off. I'm sure I will have to learn to scale back, even when I feel better, because it eventually catches up with you. It's not just, "Oh, I'm achy and extra tired." When you have no adrenals, overdoing it can land you in the hospital. It will be an adjustment period for quite a while. I'll have to learn how much extra medicine I need to take when I get sick, if I have an extra busy day, etc. Lots to adjust to, but I'm looking forward to all of it!
Friday, May 1, 2009
It's just peanut butter....
A couple of days ago, we were outside working on starting a garden. I do more sitting and watching than anything. I'm pretty useless at this point. Anyway, my youngest, Zane, looks in his big sister's ear. He says, "Eww!", and he turns her head toward me like I can see it from where I'm sitting.
I asked him if her ears were dirty and he said yes. Then he stuck is finger in her ear and starts twisting it around. I said, "EWWW ZANE! That is gross! You don't stick your finger in someone's ear and start cleaning it out!" He said, "Aw, it just peanut budder! I don't know how it got in there, but it just got in there."
Where do they come up with these things?
I asked him if her ears were dirty and he said yes. Then he stuck is finger in her ear and starts twisting it around. I said, "EWWW ZANE! That is gross! You don't stick your finger in someone's ear and start cleaning it out!" He said, "Aw, it just peanut budder! I don't know how it got in there, but it just got in there."
Where do they come up with these things?
Thursday, April 23, 2009
CLEARED FOR SURGERY! YAY!
I was hoping this was going to be the title of this post! Yay! What a relief! That down side is, it didn't come from the doctor I had hoped it would come from. Anyway, I now have a new doctor that is within driving distance who is very good with all of this Cushing's stuff AND the other hormonal issues. That means I now have a one stop doc. I don't have to deal with two separate doctors for everything now. I really liked my other doctors, but they were not on the same page, and I was tired of being the book mark (stuck in the middle).
My new doctor looked at all of my labs since surgery, my pathology, surgical report, etc., and decided that I was ready for my next surgery... a BLA. He and I are on the same page about all of this.
So, I will be having surgery in Wisconsin with Dr. Chiang. The bad part is, my husband is called for jury duty for the month of May. Hopefully he won't have to go, but he won't know until the day or so before jury duty. At any rate, I will be getting surgery soon, whether in May or June.
I'm ready for a life free of Cushing's! I can't wait!!
Thank you all, for your prayers. I know I had lots of family and friends praying for me, and I really appreciate it.
My new doctor looked at all of my labs since surgery, my pathology, surgical report, etc., and decided that I was ready for my next surgery... a BLA. He and I are on the same page about all of this.
So, I will be having surgery in Wisconsin with Dr. Chiang. The bad part is, my husband is called for jury duty for the month of May. Hopefully he won't have to go, but he won't know until the day or so before jury duty. At any rate, I will be getting surgery soon, whether in May or June.
I'm ready for a life free of Cushing's! I can't wait!!
Thank you all, for your prayers. I know I had lots of family and friends praying for me, and I really appreciate it.
Friday, April 10, 2009
New news...
I found out something new. After my pituitary surgery, my pathology never said that they tried to stain for ACTH. I finally got around to calling them and asking them to stain it for ACTH. They should do that automatically. One of the resident doctors at my surgeon's office was in shock that they never stained it. When I told him, he had it pulled right away and had it stained.
Well, it stained positive. I knew it would, given my high IPSS results. BUT... here's the kicker. My surgeon had said in my report that he first went in the left side since my MRI showed what he thought was tumor on the left. My IPSS said on the right. He didn't find anything abnormal on the left, but he took a sample and sent it to pathology. They said it was normal (but now I know they didn't use ACTH to stain it!). Then, he went in the right side, and didn't see anything at first, but kept exploring, and found it on the posterior of the gland. He removed all of that and sent it on a slide. Now that they have stained them, BOTH slides stained positive for ACTH. That tells me I have HYPERPLASIA! There is nothing on the report that says hyperplasia, but I'm smart enough to figure that out, given the detail of my surgeon's report. He described where he took the tissue from, and what it looked like (normal, abnormal, white, tan, pink, etc.).
That makes me feel better about the BLA. I've known that is what I need. I've been tempted at times to go for the second pituitary surgery, just to get relief, but in my heart of hearts, I knew it wouldn't work. Now I REALLY know it wouldn't work. When you have hyperplasia, that means the bad cells are spread out, through out the gland, and you would never get all of them. They are basically sitting there waiting to become a tumor. I'm glad I held out for the BLA. Now, I just need to get the clearance. I think I'm close. I hope and pray it's soon! I'm so tired of dealing with all of this.
The Keto has been helping, but I'm still cycling. It doesn't stop that. That means sometimes it works really good, and sometimes it doesn't. Sometimes, I dip too low naturally, and I have to quit taking it for a bit. It's still a balancing act, but it does make me feel better than I feel without it! Most of the time, I never am low enough to even take the hydro with it. I has helped me lose 8 lbs and 8.5 inches, so I know it's working. I do bounce up in down in weight though, because I'm still cycling.
I'm hoping my next post will say, "CLEARED FOR SURGERY! YAY".
Well, it stained positive. I knew it would, given my high IPSS results. BUT... here's the kicker. My surgeon had said in my report that he first went in the left side since my MRI showed what he thought was tumor on the left. My IPSS said on the right. He didn't find anything abnormal on the left, but he took a sample and sent it to pathology. They said it was normal (but now I know they didn't use ACTH to stain it!). Then, he went in the right side, and didn't see anything at first, but kept exploring, and found it on the posterior of the gland. He removed all of that and sent it on a slide. Now that they have stained them, BOTH slides stained positive for ACTH. That tells me I have HYPERPLASIA! There is nothing on the report that says hyperplasia, but I'm smart enough to figure that out, given the detail of my surgeon's report. He described where he took the tissue from, and what it looked like (normal, abnormal, white, tan, pink, etc.).
That makes me feel better about the BLA. I've known that is what I need. I've been tempted at times to go for the second pituitary surgery, just to get relief, but in my heart of hearts, I knew it wouldn't work. Now I REALLY know it wouldn't work. When you have hyperplasia, that means the bad cells are spread out, through out the gland, and you would never get all of them. They are basically sitting there waiting to become a tumor. I'm glad I held out for the BLA. Now, I just need to get the clearance. I think I'm close. I hope and pray it's soon! I'm so tired of dealing with all of this.
The Keto has been helping, but I'm still cycling. It doesn't stop that. That means sometimes it works really good, and sometimes it doesn't. Sometimes, I dip too low naturally, and I have to quit taking it for a bit. It's still a balancing act, but it does make me feel better than I feel without it! Most of the time, I never am low enough to even take the hydro with it. I has helped me lose 8 lbs and 8.5 inches, so I know it's working. I do bounce up in down in weight though, because I'm still cycling.
I'm hoping my next post will say, "CLEARED FOR SURGERY! YAY".
Thursday, March 26, 2009
This post is late....
Before I made that last post, I should have posted this, on our anniversary. I've just been too sick to care about anything.
My husband and I celebrated our 19th wedding anniversary on the 24th. Not so much celebrating though. I was sick! We did go away for the weekend. We went to Amish country for a couple of days. On Saturday, we walked around in 3 shops. Maybe 20 min. max for each place. It wore me out so bad! By that evening, when I would get up to walk, I could hardly move. I suppose that was the lead in, to the previous post.
Anyway, I really was not wanting to go anywhere this year. We usually try to get away for a day or two, for our anniversary. We have had so much medical expense, and since I'm facing more surgery, I didn't want to spend the money. He still wanted to go away, so we did. I just wish I had felt better to enjoy it more.
My husband is a great guy! I'm so blessed to have him for my husband! SO MANY of my friends who have/had Cushing's, go through a divorce. Of course, other people do too, but the sickness really wears you down and really works on a marriage.
I use to be like superwoman. I always had my house clean. It was always ready for visitors if anyone stopped in. He use to tease me and call me a neat freak. He doesn't get "neat freak" any more. Now it's more like "super slob". The kids help out, but they also make messes. I don't have the energy to stay on them to keep it up all of the time. When you have little kids, it's hard to keep the house neat. It has to be worked on ALL the time to keep it neat with little ones around. The older kids get upset because they clean it all up, and the little ones end up tearing it all out again.
After my pituitary surgery, when I got to feeling so good, I got this house really clean, and really organized again. He said he could tell I was doing so much better because the house was clean again, like I always use to have it. When the symptoms came back, and everything started going downhill, so did the house. He never complains about it, and I'm grateful! If it really bothers him, he will pitch in and help do stuff.
I think a lot of the spouses of Cushing's patients get so tired of the medical issues. I hear that a lot, that the spouses say they are tired of the drama. I try not to complain too much. I don't want to be a drag. However, I can't pretend I'm not sick. I physically and mentally don't have the strength to pretend I'm not sick. I did that for years. I'm beyond that now. It is what it is. I'm so thankful that my husband accepts that. I know when we got married, he never counted on going through all of this. Nobody ever does. A lot of people bail. He's stuck with me through it all. I'm hoping I'll be cured by my 20th anniversary, and then we can REALLY celebrate!
My husband is the love of my life. We dated for almost 2 years before we got married. We married at 19. Most people would never dream of getting married at 19 and expect it to last! We've had ups and downs, as anyone does, but we never fight, and we still love each other. That's saying a lot these days! Before I was married, I prayed and prayed for God to show me who he had intended for me. Some people don't believe in that, but we do. We felt that we were meant for each other. It's still working, 19 yrs. later. God helps us each day, to love each other, to make it through the bad times, and to trust in him. I'm so thankful that He gave me Andy!
My husband and I celebrated our 19th wedding anniversary on the 24th. Not so much celebrating though. I was sick! We did go away for the weekend. We went to Amish country for a couple of days. On Saturday, we walked around in 3 shops. Maybe 20 min. max for each place. It wore me out so bad! By that evening, when I would get up to walk, I could hardly move. I suppose that was the lead in, to the previous post.
Anyway, I really was not wanting to go anywhere this year. We usually try to get away for a day or two, for our anniversary. We have had so much medical expense, and since I'm facing more surgery, I didn't want to spend the money. He still wanted to go away, so we did. I just wish I had felt better to enjoy it more.
My husband is a great guy! I'm so blessed to have him for my husband! SO MANY of my friends who have/had Cushing's, go through a divorce. Of course, other people do too, but the sickness really wears you down and really works on a marriage.
I use to be like superwoman. I always had my house clean. It was always ready for visitors if anyone stopped in. He use to tease me and call me a neat freak. He doesn't get "neat freak" any more. Now it's more like "super slob". The kids help out, but they also make messes. I don't have the energy to stay on them to keep it up all of the time. When you have little kids, it's hard to keep the house neat. It has to be worked on ALL the time to keep it neat with little ones around. The older kids get upset because they clean it all up, and the little ones end up tearing it all out again.
After my pituitary surgery, when I got to feeling so good, I got this house really clean, and really organized again. He said he could tell I was doing so much better because the house was clean again, like I always use to have it. When the symptoms came back, and everything started going downhill, so did the house. He never complains about it, and I'm grateful! If it really bothers him, he will pitch in and help do stuff.
I think a lot of the spouses of Cushing's patients get so tired of the medical issues. I hear that a lot, that the spouses say they are tired of the drama. I try not to complain too much. I don't want to be a drag. However, I can't pretend I'm not sick. I physically and mentally don't have the strength to pretend I'm not sick. I did that for years. I'm beyond that now. It is what it is. I'm so thankful that my husband accepts that. I know when we got married, he never counted on going through all of this. Nobody ever does. A lot of people bail. He's stuck with me through it all. I'm hoping I'll be cured by my 20th anniversary, and then we can REALLY celebrate!
My husband is the love of my life. We dated for almost 2 years before we got married. We married at 19. Most people would never dream of getting married at 19 and expect it to last! We've had ups and downs, as anyone does, but we never fight, and we still love each other. That's saying a lot these days! Before I was married, I prayed and prayed for God to show me who he had intended for me. Some people don't believe in that, but we do. We felt that we were meant for each other. It's still working, 19 yrs. later. God helps us each day, to love each other, to make it through the bad times, and to trust in him. I'm so thankful that He gave me Andy!
Two weeks after starting Keto
The first week was great! I felt so much better, and I lost 1 lb. per day. Close to starting the second week, I quit losing weight, started getting hot flashes, red face, high blood pressure, huge zits, etc. During that first week, people had noticed that my face was not so red and my overall complexion looked better. I felt so good, I had to remind myself that I wasn't cured, I was just taking Keto!
I quit taking the morning dose of hydro, since I had so many high signs. I kept taking the Keto, but I continue to have the hot flashes, red face, etc. The last several days, I've had a killer headache. Just rolling over in bed made my head feel like it would blow off. It hurts at the base of my skull, and across my forehead. Light and movement bothers it. I don't know if it's the change in weather (that sometimes does it for me) or if it's Cushing's related, or something else.
My back muscles have been aching really bad, like when you have the flu. That is the only indication I could say might mean my cortisol is too low. I weighed today, and I lost more weight again. Yay! I'm down 7 lbs. since starting the Keto.
I didn't take the Keto last night, and I took the hydro this morning, to see if it would help with the pain (maybe I'm too low?) Nope! All it did was give me immediate indigestion! I've had that bad in the past week. It's also giving me more hot flashes. Nice!
I don't know if I need more Keto or what. I'm almost afraid to go higher because of my cycling. I would ask my doctor first, before going higher. I know that around the beginning of every month, I go low, and hurt all over. I don't know if maybe the Keto threw me off schedule, or by the first of April, I'll go REALLY low. I don't want to end up with AI.
All I do know, is that I AM getting a response to Keto, and that's a good thing. I also know I need to see my chiropractor. I'm out in lots of places. He is on vacation this week. Nice! I have to wait until Monday to see him.
The Keto is making the facial hair fall out. I still have some, but it is not nearly as thick as it was. The bad part is, I'm also losing more from my head. That's NOT a good thing! Sometimes I wonder if I'll have any hair left by the time I get all done with this stuff!
I quit taking the morning dose of hydro, since I had so many high signs. I kept taking the Keto, but I continue to have the hot flashes, red face, etc. The last several days, I've had a killer headache. Just rolling over in bed made my head feel like it would blow off. It hurts at the base of my skull, and across my forehead. Light and movement bothers it. I don't know if it's the change in weather (that sometimes does it for me) or if it's Cushing's related, or something else.
My back muscles have been aching really bad, like when you have the flu. That is the only indication I could say might mean my cortisol is too low. I weighed today, and I lost more weight again. Yay! I'm down 7 lbs. since starting the Keto.
I didn't take the Keto last night, and I took the hydro this morning, to see if it would help with the pain (maybe I'm too low?) Nope! All it did was give me immediate indigestion! I've had that bad in the past week. It's also giving me more hot flashes. Nice!
I don't know if I need more Keto or what. I'm almost afraid to go higher because of my cycling. I would ask my doctor first, before going higher. I know that around the beginning of every month, I go low, and hurt all over. I don't know if maybe the Keto threw me off schedule, or by the first of April, I'll go REALLY low. I don't want to end up with AI.
All I do know, is that I AM getting a response to Keto, and that's a good thing. I also know I need to see my chiropractor. I'm out in lots of places. He is on vacation this week. Nice! I have to wait until Monday to see him.
The Keto is making the facial hair fall out. I still have some, but it is not nearly as thick as it was. The bad part is, I'm also losing more from my head. That's NOT a good thing! Sometimes I wonder if I'll have any hair left by the time I get all done with this stuff!
Friday, March 13, 2009
Started Ketoconozole last night
After talking to Dr. F. last, I decided to try to get just a bit more testing in, in hopes of catching a few more highs before starting the Keto. I don't have all of the results back yet. It will be a while on that.
I was nervous about starting the Keto. I cycle so rapidly with Cushing's, that I've worried about how the Keto might work for me. As it is, when I dip low, it's really low for me, then add in the Keto,.... it makes me worry about AI. Aside from all of that, I've been anxious to get it started. This last week has been a doozy for me. I went from sleeping most of a 24 hr. period for several days, to being awake for most of a 24 hr. period. Whatever it was (I've never figured out my highs and lows), I tested through all of it! I did midnight serums and 24 hr. UFC's. I'm hoping to at least get some high 17-Hydroxycorticosteroids out of it! I do know that one of my midnight serums was 5 something. Not high enough, but it's still in the elevated range. I finished collecting my last UFC yesterday morning, which was Thursday.
So, last night, I started my Keto. Being the chicken that I am (about this), I decided to ease myself into it. I am suppose to take 200 mg. at bedtime. (On my bottle, it says to take at 9 PM. I'm glad they defined "bed time" for me! LOL! Since mine is so sporatic, I don't know what "bed time" is.) I decided to start out with 100 mg., and see how I do on that, before going to the 200 mg. So far, I like it! Within 15 min. of taking it, I was getting tired! I also started getting colder. I wasn't chilling, just cooling down. With Cushing's, I tend to run on the hot side. I went to bed around 1:30 AM. That's pretty good for me! I did wake up early this morning, though. I decided to get up, since I was awake and feeling pretty good, and take my medicine. I took 15 mg. of hydrocortisone, my thyroid medicine (I'll talk about that later) and my GH shot.
The only side effect I had from the Keto, so far, was diarrhea. Not bad, not the stomach killing you type of stuff, or being married to the toilet for the night. I can deal with this! I took my bp last night too, and it was down from what it had been running. I hope the Keto and I keep getting along like this! I feel more calm, and like I have more energy. I think the reason I started getting tired was because of it calming everything down. I have felt like my body and brain have a lot of commotion going on lately. I told my husband I wish someone would just unplug me! It's hard to explain. When I would try to go to sleep, in the last several days, I would lay there, tired, but wide awake. I told one of my friends that I might be able to sleep if the voices in my head would shut up long enough! LOL! I don't really hear voices, but what I mean is, it's like my brain is on fast forward. I have everything running through my head, and all at once. I have to wonder if that is what it feels like to have ADHD, or ADD. I never use to be like this. I mean, before Cushing's. After surgery, it went away. I felt nice and calm again. This was another sign for me that Cushing's was back.
I believe in my last post, or maybe before that, I mentioned that my local endo was afraid to give me a higher dose of thyroid meds. She was worried that my adrenals might not be able to handle it, and that it would throw me into an adrenal crisis. She had reasons for feeling that way, and she's not totally off the mark. My AM cortisol numbers are low, so with just looking at those, it looks like I am adrenally insufficient. The problem is, that I still have Cushing's. This means I have higher cortisol at night, or at different times throughout the day, but she is not seeing that from a morning level. My levels are flipped from a normal person's, because of the Cushing's. So, I talked to my CA Cushing's specialist about this. He told me to start on 100 mcg. of Levoxyl. He is not concerned with the possibility of AI. Besides, if it were to happen, I have the hydrocortisone pills, plus my emergency injectible if I need it. I started on the Levoxyl and I've had no problems from that either. Now that I'm adding in Keto, it does concern me. I worry that if the Keto drops my levels too far, that the higher dose of thyroid medicine will make me go AI. That's another reason I'm easing myself into this. So far, everything is getting along! It's too soon to tell for sure, since I've only taken the Keto once, but so far, so good!
I was nervous about starting the Keto. I cycle so rapidly with Cushing's, that I've worried about how the Keto might work for me. As it is, when I dip low, it's really low for me, then add in the Keto,.... it makes me worry about AI. Aside from all of that, I've been anxious to get it started. This last week has been a doozy for me. I went from sleeping most of a 24 hr. period for several days, to being awake for most of a 24 hr. period. Whatever it was (I've never figured out my highs and lows), I tested through all of it! I did midnight serums and 24 hr. UFC's. I'm hoping to at least get some high 17-Hydroxycorticosteroids out of it! I do know that one of my midnight serums was 5 something. Not high enough, but it's still in the elevated range. I finished collecting my last UFC yesterday morning, which was Thursday.
So, last night, I started my Keto. Being the chicken that I am (about this), I decided to ease myself into it. I am suppose to take 200 mg. at bedtime. (On my bottle, it says to take at 9 PM. I'm glad they defined "bed time" for me! LOL! Since mine is so sporatic, I don't know what "bed time" is.) I decided to start out with 100 mg., and see how I do on that, before going to the 200 mg. So far, I like it! Within 15 min. of taking it, I was getting tired! I also started getting colder. I wasn't chilling, just cooling down. With Cushing's, I tend to run on the hot side. I went to bed around 1:30 AM. That's pretty good for me! I did wake up early this morning, though. I decided to get up, since I was awake and feeling pretty good, and take my medicine. I took 15 mg. of hydrocortisone, my thyroid medicine (I'll talk about that later) and my GH shot.
The only side effect I had from the Keto, so far, was diarrhea. Not bad, not the stomach killing you type of stuff, or being married to the toilet for the night. I can deal with this! I took my bp last night too, and it was down from what it had been running. I hope the Keto and I keep getting along like this! I feel more calm, and like I have more energy. I think the reason I started getting tired was because of it calming everything down. I have felt like my body and brain have a lot of commotion going on lately. I told my husband I wish someone would just unplug me! It's hard to explain. When I would try to go to sleep, in the last several days, I would lay there, tired, but wide awake. I told one of my friends that I might be able to sleep if the voices in my head would shut up long enough! LOL! I don't really hear voices, but what I mean is, it's like my brain is on fast forward. I have everything running through my head, and all at once. I have to wonder if that is what it feels like to have ADHD, or ADD. I never use to be like this. I mean, before Cushing's. After surgery, it went away. I felt nice and calm again. This was another sign for me that Cushing's was back.
I believe in my last post, or maybe before that, I mentioned that my local endo was afraid to give me a higher dose of thyroid meds. She was worried that my adrenals might not be able to handle it, and that it would throw me into an adrenal crisis. She had reasons for feeling that way, and she's not totally off the mark. My AM cortisol numbers are low, so with just looking at those, it looks like I am adrenally insufficient. The problem is, that I still have Cushing's. This means I have higher cortisol at night, or at different times throughout the day, but she is not seeing that from a morning level. My levels are flipped from a normal person's, because of the Cushing's. So, I talked to my CA Cushing's specialist about this. He told me to start on 100 mcg. of Levoxyl. He is not concerned with the possibility of AI. Besides, if it were to happen, I have the hydrocortisone pills, plus my emergency injectible if I need it. I started on the Levoxyl and I've had no problems from that either. Now that I'm adding in Keto, it does concern me. I worry that if the Keto drops my levels too far, that the higher dose of thyroid medicine will make me go AI. That's another reason I'm easing myself into this. So far, everything is getting along! It's too soon to tell for sure, since I've only taken the Keto once, but so far, so good!
Wednesday, March 4, 2009
Finally, an update
It's been a long time since I have posted anything. I have been feeling terrible, and that is putting it mildly!
As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.
I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!
Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.
I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.
As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.
Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.
Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.
Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.
I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!
As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.
I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!
Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.
I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.
As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.
Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.
Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.
Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.
I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!
Wednesday, January 21, 2009
MRI report is back!
This is going to sound weird to people who just don't understand all about this disease. I got the radiologist's report back on my latest MRI. In short, they don't see any tumor. That doesn't mean I don't have Cushing's, it means they don't see any more tumor THERE to be taken out.
The nature of the beast is like this. You can have different types of tumors. There are ones they call ooey gooey tumors, that are similar to snot, and just kind of run everywhere. There are well formed tumors (mine was) but they are not always easy to get either. If one cell gets left behind, it begins to grow again. Some of these tumors have tentacles on them. They are very tiny, and not easily seen. My surgeon took extra tissue around the tumor, and thought he got all of it, but they can't see those tentacles, or how far they might go within the gland.
I was hoping they would not see any tumor regrowth. That would have meant that my endocrinologist would have wanted me to go back for another pituitary surgery. If they didn't get it all the first time, who's to say they will get it the second time? The second time around you have more chance for what is called a CSF leak. It's cerebral spinal fluid. No thanks! Since they are going in and just hacking away at the pituitary, hoping to get any tentacles they missed, you end up with hormone losses. That's a mess in my opinion. At this point, most of my hormones are fine, and I want to keep it that way. I don't want to balance every one of my hormones for the rest of my life!
So, since they don't see anything to go after, this means I can have a bilateral adrenalectomy, also called a BLA for short. With the BLA, they take out both of your adrenals. That cuts the feedback loop and stops the excess cortisol that is causing Cushing's. There are "complications" associated with this surgery as well, but they are more favorable to me. If you still have tumor on/in the pituitary, and you have a BLA, there is a chance that the tumor can start growing rapidly. If it does, then you have to either have another pituitary surgery to debulk the tumor, or have something like the gamma knife radiation. You can also develope Nelson's Syndrome. With that, your skin gets dark when your ACTH levels go high. Sometimes you just look tan. Other times, you look dirty and splotchy. Personally, I feel so bad, I don't care if I look like a spotted leopard! I just want to feel good again. Everyone has different feelings about our options and what is best for us. We are all different. This is what I think is best for me.
Once you have a BLA, that means without adrenals, you have NO cortisol. Everyone has to have cortisol to live. It's not an option to not take it. If you don't take it, you WILL die! You can't take it whenever you feel like it, you can't run out of it and pick it up when you get around to it. That means, you are one pill away from death at all times. That is drastic, but it still sounds better to me than to go through another pituitary surgery, end up with a CSF leak, lose a lot or all of my hormone function, and still not be cured (this happens a LOT)! So, I'd rather just skip to the BLA. I've lost too much of my life to this already. I don't want to spend more years of failed surgery, testing again, another surgery, etc. I just want to be done with it, and this is the best way to do that.
So, where does that leave me right now, at this moment? Well, I am testing again, and when I get some good highs, I can move on. My doctor made it sound like I won't have to do a lot of testing. He really wanted to get the MRI report. He would like to see some more highs (I think), but the ones I already had were high enough that he agreed that I still have Cushing's. I hope I don't have to test and test forever to get super high highs again. I've already went downhill so fast, it's not funny! I was feeling decent at the beginning of Dec. By the end, I was starting to feel pretty bad. When the new year hit, I hit rock bottom again! I feel like I'm back at square one. Everything that I'd seen progress on, is back to the same ole, same ole! Not good!
The nature of the beast is like this. You can have different types of tumors. There are ones they call ooey gooey tumors, that are similar to snot, and just kind of run everywhere. There are well formed tumors (mine was) but they are not always easy to get either. If one cell gets left behind, it begins to grow again. Some of these tumors have tentacles on them. They are very tiny, and not easily seen. My surgeon took extra tissue around the tumor, and thought he got all of it, but they can't see those tentacles, or how far they might go within the gland.
I was hoping they would not see any tumor regrowth. That would have meant that my endocrinologist would have wanted me to go back for another pituitary surgery. If they didn't get it all the first time, who's to say they will get it the second time? The second time around you have more chance for what is called a CSF leak. It's cerebral spinal fluid. No thanks! Since they are going in and just hacking away at the pituitary, hoping to get any tentacles they missed, you end up with hormone losses. That's a mess in my opinion. At this point, most of my hormones are fine, and I want to keep it that way. I don't want to balance every one of my hormones for the rest of my life!
So, since they don't see anything to go after, this means I can have a bilateral adrenalectomy, also called a BLA for short. With the BLA, they take out both of your adrenals. That cuts the feedback loop and stops the excess cortisol that is causing Cushing's. There are "complications" associated with this surgery as well, but they are more favorable to me. If you still have tumor on/in the pituitary, and you have a BLA, there is a chance that the tumor can start growing rapidly. If it does, then you have to either have another pituitary surgery to debulk the tumor, or have something like the gamma knife radiation. You can also develope Nelson's Syndrome. With that, your skin gets dark when your ACTH levels go high. Sometimes you just look tan. Other times, you look dirty and splotchy. Personally, I feel so bad, I don't care if I look like a spotted leopard! I just want to feel good again. Everyone has different feelings about our options and what is best for us. We are all different. This is what I think is best for me.
Once you have a BLA, that means without adrenals, you have NO cortisol. Everyone has to have cortisol to live. It's not an option to not take it. If you don't take it, you WILL die! You can't take it whenever you feel like it, you can't run out of it and pick it up when you get around to it. That means, you are one pill away from death at all times. That is drastic, but it still sounds better to me than to go through another pituitary surgery, end up with a CSF leak, lose a lot or all of my hormone function, and still not be cured (this happens a LOT)! So, I'd rather just skip to the BLA. I've lost too much of my life to this already. I don't want to spend more years of failed surgery, testing again, another surgery, etc. I just want to be done with it, and this is the best way to do that.
So, where does that leave me right now, at this moment? Well, I am testing again, and when I get some good highs, I can move on. My doctor made it sound like I won't have to do a lot of testing. He really wanted to get the MRI report. He would like to see some more highs (I think), but the ones I already had were high enough that he agreed that I still have Cushing's. I hope I don't have to test and test forever to get super high highs again. I've already went downhill so fast, it's not funny! I was feeling decent at the beginning of Dec. By the end, I was starting to feel pretty bad. When the new year hit, I hit rock bottom again! I feel like I'm back at square one. Everything that I'd seen progress on, is back to the same ole, same ole! Not good!
Thursday, January 15, 2009
I rode a scooter!
I haven't updated my blog for a while, because there really isn't anything new going on. The most recent development is that I've given in and rode one of the scooters at Wal-Mart. I've looked at them many times. I'd stand there and eyeball them, wondering when I'd have to ride one. I'd feel like I had enough energy to make it through the store, only to find myself in an aisle, wanting to cry and lay on the floor, from pure exhaustion and weakness.
Last night, I went to the grocery store. We have had some major snow here. We didn't have church because of the weather, and I REALLY needed groceries, so I went out to get some. I got the Kroger sale items, and headed to Wal-Mart. Once inside the store, and not far from the front, I knew I was going down fast. I didn't know how I was going to make it, as I was needing to go through the whole grocery section. I told Ciera that I wished I had a cart to ride. She suggested I get a scooter. I didn't want to do it. I said, "No, I don't know if they even have any up there." Well duh! It's late at night, there's a major snow storm going on, and there were MAYBE 10 people in the whole store shopping. She said she would go get one for me and bring it back. I didn't want her to do that, so I walked up there, and asked the man how to use it. That was embarassing! I felt awful. I know people look at me and don't think I'm sick, because I don't LOOK like I'm sick. What I feel inside is something totally different than what people see on the outside. I felt like collapsing, so I broke down, swallowed my pride, and rode a scooter.
I'd put off riding the scooter for a long time. Actually, I was about to ride them, and then I got my GH replacement, and that helped me tremendously. But, when the cortisol goes high, or other things are out of balance, it doesn't feel like I have any GH in me. I am very weak! After surgery, I was doing so good, and didn't need it. I didn't even consider it, except maybe the first time or two out at the store, right after surgery. But, even then, I made it ok just walking.
It feels like defeat to give in and ride a scooter. I feel like I'm always trying to stay a step ahead of this disease. I don't want to let it win. Riding the scooters made me feel like the disease won. I know it hasn't, but I'd hoped I'd never be this bad again before getting back to surgery. Once I started going downhill, it went fast! Everyone tells me that your highs are higher, and your lows are lower. I think it's true. Once the New Year hit, I went into a low! At first, I didn't know what was happening, because I never felt that bad in a low before. I'd felt like I had high sypmtoms during our winter Campmeeting. I couldn't test because we were gone. Once I got home, I tested, but I'd missed the high. I was going lower on the tests. Then, it hit my bones and muscles. I can't even describe that kind of pain. Just imagine having a very bad flu, and that's about what I felt like. I didn't feel sick to my stomach, but I had joint and muscle pain.
Now, I am starting to feel better, pain wise, and I feel like I'm coming up out of that low cycle. I'm waiting for the next high to hit, and hoping I will get some really high numbers so I can get back on a surgery table somewhere. It's pretty bad when you WANT to have surgery. I just want to feel better! I felt sooo good after surgery. It just didn't last long enough. I'd hoped I wouldn't get this bad before being rediagnosed, and getting another surgery. Wishful thinking, I guess.
Last night, I went to the grocery store. We have had some major snow here. We didn't have church because of the weather, and I REALLY needed groceries, so I went out to get some. I got the Kroger sale items, and headed to Wal-Mart. Once inside the store, and not far from the front, I knew I was going down fast. I didn't know how I was going to make it, as I was needing to go through the whole grocery section. I told Ciera that I wished I had a cart to ride. She suggested I get a scooter. I didn't want to do it. I said, "No, I don't know if they even have any up there." Well duh! It's late at night, there's a major snow storm going on, and there were MAYBE 10 people in the whole store shopping. She said she would go get one for me and bring it back. I didn't want her to do that, so I walked up there, and asked the man how to use it. That was embarassing! I felt awful. I know people look at me and don't think I'm sick, because I don't LOOK like I'm sick. What I feel inside is something totally different than what people see on the outside. I felt like collapsing, so I broke down, swallowed my pride, and rode a scooter.
I'd put off riding the scooter for a long time. Actually, I was about to ride them, and then I got my GH replacement, and that helped me tremendously. But, when the cortisol goes high, or other things are out of balance, it doesn't feel like I have any GH in me. I am very weak! After surgery, I was doing so good, and didn't need it. I didn't even consider it, except maybe the first time or two out at the store, right after surgery. But, even then, I made it ok just walking.
It feels like defeat to give in and ride a scooter. I feel like I'm always trying to stay a step ahead of this disease. I don't want to let it win. Riding the scooters made me feel like the disease won. I know it hasn't, but I'd hoped I'd never be this bad again before getting back to surgery. Once I started going downhill, it went fast! Everyone tells me that your highs are higher, and your lows are lower. I think it's true. Once the New Year hit, I went into a low! At first, I didn't know what was happening, because I never felt that bad in a low before. I'd felt like I had high sypmtoms during our winter Campmeeting. I couldn't test because we were gone. Once I got home, I tested, but I'd missed the high. I was going lower on the tests. Then, it hit my bones and muscles. I can't even describe that kind of pain. Just imagine having a very bad flu, and that's about what I felt like. I didn't feel sick to my stomach, but I had joint and muscle pain.
Now, I am starting to feel better, pain wise, and I feel like I'm coming up out of that low cycle. I'm waiting for the next high to hit, and hoping I will get some really high numbers so I can get back on a surgery table somewhere. It's pretty bad when you WANT to have surgery. I just want to feel better! I felt sooo good after surgery. It just didn't last long enough. I'd hoped I wouldn't get this bad before being rediagnosed, and getting another surgery. Wishful thinking, I guess.
Thursday, January 1, 2009
It's 2009!
I sure am glad 2008 is over! I'm hoping 2009 will be a better year! I had another MRI on Wed. morning, the 31st. It was my last big bang on that good ole ins. card for 2008! Now we get to start all over for 2009. Yay! Not!
So, I am going to try to get a copy of the radiologists report, tomorrow. I hope they don't see any tumor regrowth. I'd rather move on to a BLA. I also need to get results to a lot of tests that I've done. If I can catch some really good highs soon, it will help move me on faster. I just want to be done with this, and feel better. I think someone gave me a free lifetime membership though.
So, I am going to try to get a copy of the radiologists report, tomorrow. I hope they don't see any tumor regrowth. I'd rather move on to a BLA. I also need to get results to a lot of tests that I've done. If I can catch some really good highs soon, it will help move me on faster. I just want to be done with this, and feel better. I think someone gave me a free lifetime membership though.
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