I have to admit, the past few months I have not been a very good advocate for my fellow Cushing's sufferers. I don't have any excuse except that I am sick to death of Cushing's. I want it eradicated. I don't want people hurting and suffering, and for awhile I just couldn't stand to watch others going through it. It is a terrible, heartbreaking disease that destroys lives and relationships, as well as bodies and minds and self-esteem. It steals years from patients, as doctors hem and haw and let us suffer. It's just not right.
I've even found myself not wanting to get to know more Cushing's patients because I know what they are going through, and I just couldn't deal with more of the same thing. I know that is selfish, but I think it was really just self-preservation. But I am beyond that now, at least I hope so.
If I were to tell you of the people I know who have had dozens of high tests over a period of years who keep getting told to wait for surgery because "I'm just not sure", you would not believe it. If you get a high midnight serum test result, the doctor explains it away: You must have been stressed driving to the hospital at night. If that were true, why do we never have highs in the daytime due to driving to the hospital? It just doesn't make any sense. But do these doctors even know that cyclic Cushing's patients usually have low daytime levels and high nighttime levels? I am quite positive that they do not.
I have a friend who mainly gets highs on all her tests. Every time she gets one, the doctor tells her to try one more. If she should get a low result the doctor says See? You don't have it! But she gets more highs than lows and the doctor never will admit that she has it, and she will not send her to surgery. This woman is sick, and has gained 80 pounds. She is a beautiful woman without a moon face. But she was a size 2 in her former life, the one she lived without Cushing's. She was willowy then, and she has always had a slender face. She doesn't fit the picture most doctors think all Cushing's patients look like.
It's not fair! It's not right! They are making people suffer, and why? Because they were told in medical school that they will probably never see a case of Cushing's in their lifetime - that's how rare it is. My friends and I agree that they probably won't see a case in their lifetime, because they will not open their eyes, and they will not open their minds, and they do not read the research that says it's not as rare as they once were told.
I am angry about how I was treated when I was so sick. And I am not alone. I'm going to work at being a better advocate.
Saturday, August 23, 2008
Lightning Struck Our House
Lightning struck our house this morning. I was getting ready to step outside to go to the bank and turned to look for the umbrella since it was pouring down rain. Then BOOM and a ball of fire and holy crapola!
We have 3 pines growing up through our deck and 2 were hit. Hub was on the laptop and got a little shock, but is ok, thank God. We looked outside when the rain slowed. There are 2 holes blown in the side of the house. And there were 2 dead birds lying on the deck. :(
We have no power. The electric company came and restored it from the main source, but an electrician has to come check things out before we can check to see what appliances might have been fried.
Oh, the fire department was here, too, looking for heat with a geothermal camera, and said it looked fine.
Sheesh! What an exciting day. I'm exhausted. I'm just glad the hub wasn't hurt, and that I didn't step outside when I planned to.
I guess this is the price you pay for living on a hill in the woods. The picture of the wooded lane at the top of the page is our lane, part of the beauty we get to enjoy here everyday.
But I'm still shook up!
We have 3 pines growing up through our deck and 2 were hit. Hub was on the laptop and got a little shock, but is ok, thank God. We looked outside when the rain slowed. There are 2 holes blown in the side of the house. And there were 2 dead birds lying on the deck. :(
We have no power. The electric company came and restored it from the main source, but an electrician has to come check things out before we can check to see what appliances might have been fried.
Oh, the fire department was here, too, looking for heat with a geothermal camera, and said it looked fine.
Sheesh! What an exciting day. I'm exhausted. I'm just glad the hub wasn't hurt, and that I didn't step outside when I planned to.
I guess this is the price you pay for living on a hill in the woods. The picture of the wooded lane at the top of the page is our lane, part of the beauty we get to enjoy here everyday.
But I'm still shook up!
Friday, August 22, 2008
My Cushing's Story
It has been a long time since I've done an update on my health after my pituitary surgery in January of 2007, and today just seemed like a good day to do it. I want to preface this by saying that it took about 12 years before a doctor actually listened to me and noticed the changes that I'd been pointing out to them all along. I had doubts thrown at me all the way through my Cushing's journey, right up till the day before surgery.
I'm not your typical Cushie, I guess. My face is slender compared to many patients. I'm short and used to weigh around 110 pounds for many years, then it crept up to 120 and I was still ok with that. Even 130 did not alarm me. I have what they used to call an hourglass figure and felt good. I was not obsessed with my weight, but tried to stay healthy with daily exercise and I ate a very healthy low fat/low sugar diet. When my weight was headed to 140, I started feeling a little desperate. I joined a gym and went every night after work. I'd walk on the treadmill for an hour and lift weights after that. I would come home exhausted. And I did not lose weight.
I asked my doctor at that time what was going on. I didn't have a history with a doctor because I only went to the doctor if I was sick, which was seldom. I was met with a smirk and "Well, you ARE getting older, you know!" It just didn't make sense to me, but I figured the doctor knew best. (I never think like that nowadays...they are all under my close supervision!)
My weight went up to 150. I didn't like it, but couldn't lose weight like I used to be able to. I went on every diet you can think of and would lose 9 pounds at the very most after months and months. Eventually I just gave up because nothing was happening. The weight was now concentrated right up under my bra. I looked pregnant.
In 2003, I broke my ankle and was confined to my house in the dead of winter for 6 weeks. During that time, I had my first panic attack. The strange thing was that they would hit every night around 9 or 10. I was having anxiety, trouble sleeping, weight gain, my hair was falling out. I was forgetting things and would sometimes forget what the subject was right in the middle of a conversation. I was starting to think that if this is what the forties are like, I was going to be in big trouble by the time I hit fifty.
Here's a list of things I was diagnosed with in a span of about 10 years:
Blocked biliary duct, 3 ERCP's and finally had my gallbladder out
Fibroid tumors along with premature menopause at age 39, hysterectomy
Cataracts at age 49, surgery
Carpal tunnel, surgery
Gout, nope, not gout...looks like gout on xray, but it's not
Arthritis
Tendonitis
Degenerative disk disease of the cervical spine
Rosacea
Neuroma of both feet
Anxiety
Depression
PCOS (after having my ovaries out - is this possible?)
Lichen Planus that mysteriously disappeared
Hypermobile joints, but was never told what this could mean. Was told not to lock my knees when I stand.
Asthma
Lung nodules
Consistently high SED rate - my doctor saying "Aren't you in pain?"
Cluster hormonal migraines
Sleep apnea (occurred before the weight gain)
Hirsutism - had to shave my chin at least twice a day!
I guarantee you there are things I've missed here. I just can't remember them all. I knew it was unlikely that one person would have so many things wrong without a systemic illness causing it. I kept looking for help, and I kept getting blown off. I know they thought I was a nut and I could say I don't blame them. But I DO blame them!!!!!!!!!
I began seeing a young female doctor, fresh out of medical school. She was nice and (SHOCK!!!) she actually listened to me. At first she also said "You are getting older" but one day I took pictures of myself in from 5 yrs earlier. She looked at them and then put them down and said "I don't even recognize you." I said "That's what I've been trying to tell you!" She agreed to do one 24 hour ufc. She told me Cushing's was very rare and she didn't think I had it, but we would check. I don't know which one of us was more surprised when it came back high.
She sent me to the only local endo. He did another 24 hour cortisol and some thyroid tests, checked Vit D and said "Your vitamin D is low. Your cortisol is normal. Here's a prescription for diet pills and an antidepressant. Come back and see me in one year." And with that, I was dismissed. He didn't seem to notice that my bp was high that day, my pulse rate was high, I was sweating like a pig, and he also didn't seem too worried about the scary palpitations I'd been dealing with for months. I thought I was dying, and this guy wouldn't help me!
By this time, my weight was 204 and still climbing. I quit weighing myself. It was just too disheartening. I was having trouble walking anywhere by this time because everything hurt. I stopped going shopping and I parked in the handicapped spot at work.
Around that time, I'd found the
www.cushings-help.com website and a kind woman called me at home and said Mary, listen, you had that high ufc for a reason. Why not travel to a Cushing's expert for help? So that's exactly what I did. I flew to LA a few months later and Dr. Ted Friedman tested me there and then let me come home and test some more. Within 8 months I had a diagnosis of cyclic, or intermittent, Cushing's Disease. The tumor spotted at Cedars was 5 mm and was wreaking havoc on my body. I wanted it OUT!!!
Two months later, I got rid of the little devil and my life changed that very day. It was like a cloud had lifted. I was crying tears of happiness and gratefulness daily for awhile, so thankful to be alive, and so thankful to feel somewhat like my old self again.
It's been 19 months since my surgery. I've lost 54 pounds, and the first 50 came off with little or no effort. Now I have to work at it. I walk 3 miles a day and am trying to restrict my carbs. I'm not depressed, don't have panic attacks or scary palpitations anymore. I sleep at night. My hair quit falling out of my head and the hair on my chin is almost all gone - not quite, though. The asthma has miraculously disappeared. The migraines I suffered with for over 12 years are GONE! I am like a new woman!!!
Now, that is not to say things are perfect because they are not. I've had a complication or two along the way, in particular a bout of SIADH that caused me to be hospitalized for 5 days. But I would say that life has improved dramatically for me in the past 19 months.
If you think you have Cushing's, find a doctor who will listen to you. I really believe that should be the first priority. And seeing a real Cushing's specialist will save you time and money in the long run. Don't hesitate to travel to see a specialist if you have to. Talk to other patients. They know more about Cushing's and the testing process than most endocrinologists because they have lived it. And last of all, believe in yourself and know that you are not a hypochondriac or crazy. You are sick, and you know your body better than anyone else. Listen to it!
I am a success story, according to my friends. I hope I stay this way. The recurrence rate is high for his disease and I no longer have health insurance. Getting Cushing's again is my worst nightmare. But I try not to think about that. I am just enjoying my new life.
I'm not your typical Cushie, I guess. My face is slender compared to many patients. I'm short and used to weigh around 110 pounds for many years, then it crept up to 120 and I was still ok with that. Even 130 did not alarm me. I have what they used to call an hourglass figure and felt good. I was not obsessed with my weight, but tried to stay healthy with daily exercise and I ate a very healthy low fat/low sugar diet. When my weight was headed to 140, I started feeling a little desperate. I joined a gym and went every night after work. I'd walk on the treadmill for an hour and lift weights after that. I would come home exhausted. And I did not lose weight.
I asked my doctor at that time what was going on. I didn't have a history with a doctor because I only went to the doctor if I was sick, which was seldom. I was met with a smirk and "Well, you ARE getting older, you know!" It just didn't make sense to me, but I figured the doctor knew best. (I never think like that nowadays...they are all under my close supervision!)
My weight went up to 150. I didn't like it, but couldn't lose weight like I used to be able to. I went on every diet you can think of and would lose 9 pounds at the very most after months and months. Eventually I just gave up because nothing was happening. The weight was now concentrated right up under my bra. I looked pregnant.
In 2003, I broke my ankle and was confined to my house in the dead of winter for 6 weeks. During that time, I had my first panic attack. The strange thing was that they would hit every night around 9 or 10. I was having anxiety, trouble sleeping, weight gain, my hair was falling out. I was forgetting things and would sometimes forget what the subject was right in the middle of a conversation. I was starting to think that if this is what the forties are like, I was going to be in big trouble by the time I hit fifty.
Here's a list of things I was diagnosed with in a span of about 10 years:
Blocked biliary duct, 3 ERCP's and finally had my gallbladder out
Fibroid tumors along with premature menopause at age 39, hysterectomy
Cataracts at age 49, surgery
Carpal tunnel, surgery
Gout, nope, not gout...looks like gout on xray, but it's not
Arthritis
Tendonitis
Degenerative disk disease of the cervical spine
Rosacea
Neuroma of both feet
Anxiety
Depression
PCOS (after having my ovaries out - is this possible?)
Lichen Planus that mysteriously disappeared
Hypermobile joints, but was never told what this could mean. Was told not to lock my knees when I stand.
Asthma
Lung nodules
Consistently high SED rate - my doctor saying "Aren't you in pain?"
Cluster hormonal migraines
Sleep apnea (occurred before the weight gain)
Hirsutism - had to shave my chin at least twice a day!
I guarantee you there are things I've missed here. I just can't remember them all. I knew it was unlikely that one person would have so many things wrong without a systemic illness causing it. I kept looking for help, and I kept getting blown off. I know they thought I was a nut and I could say I don't blame them. But I DO blame them!!!!!!!!!
I began seeing a young female doctor, fresh out of medical school. She was nice and (SHOCK!!!) she actually listened to me. At first she also said "You are getting older" but one day I took pictures of myself in from 5 yrs earlier. She looked at them and then put them down and said "I don't even recognize you." I said "That's what I've been trying to tell you!" She agreed to do one 24 hour ufc. She told me Cushing's was very rare and she didn't think I had it, but we would check. I don't know which one of us was more surprised when it came back high.
She sent me to the only local endo. He did another 24 hour cortisol and some thyroid tests, checked Vit D and said "Your vitamin D is low. Your cortisol is normal. Here's a prescription for diet pills and an antidepressant. Come back and see me in one year." And with that, I was dismissed. He didn't seem to notice that my bp was high that day, my pulse rate was high, I was sweating like a pig, and he also didn't seem too worried about the scary palpitations I'd been dealing with for months. I thought I was dying, and this guy wouldn't help me!
By this time, my weight was 204 and still climbing. I quit weighing myself. It was just too disheartening. I was having trouble walking anywhere by this time because everything hurt. I stopped going shopping and I parked in the handicapped spot at work.
Around that time, I'd found the
www.cushings-help.com website and a kind woman called me at home and said Mary, listen, you had that high ufc for a reason. Why not travel to a Cushing's expert for help? So that's exactly what I did. I flew to LA a few months later and Dr. Ted Friedman tested me there and then let me come home and test some more. Within 8 months I had a diagnosis of cyclic, or intermittent, Cushing's Disease. The tumor spotted at Cedars was 5 mm and was wreaking havoc on my body. I wanted it OUT!!!
Two months later, I got rid of the little devil and my life changed that very day. It was like a cloud had lifted. I was crying tears of happiness and gratefulness daily for awhile, so thankful to be alive, and so thankful to feel somewhat like my old self again.
It's been 19 months since my surgery. I've lost 54 pounds, and the first 50 came off with little or no effort. Now I have to work at it. I walk 3 miles a day and am trying to restrict my carbs. I'm not depressed, don't have panic attacks or scary palpitations anymore. I sleep at night. My hair quit falling out of my head and the hair on my chin is almost all gone - not quite, though. The asthma has miraculously disappeared. The migraines I suffered with for over 12 years are GONE! I am like a new woman!!!
Now, that is not to say things are perfect because they are not. I've had a complication or two along the way, in particular a bout of SIADH that caused me to be hospitalized for 5 days. But I would say that life has improved dramatically for me in the past 19 months.
If you think you have Cushing's, find a doctor who will listen to you. I really believe that should be the first priority. And seeing a real Cushing's specialist will save you time and money in the long run. Don't hesitate to travel to see a specialist if you have to. Talk to other patients. They know more about Cushing's and the testing process than most endocrinologists because they have lived it. And last of all, believe in yourself and know that you are not a hypochondriac or crazy. You are sick, and you know your body better than anyone else. Listen to it!
I am a success story, according to my friends. I hope I stay this way. The recurrence rate is high for his disease and I no longer have health insurance. Getting Cushing's again is my worst nightmare. But I try not to think about that. I am just enjoying my new life.
Tuesday, August 19, 2008
I Fell in Love Again Today
I babysat all day today for the baby of a young woman who used to practically live at our house when she and my daughter were little kids. She calls me "Mom" so I am thinking it's ok if I am her baby's gramma.
So I was up early, not knowing what to expect from this new little person. She is 3 months old and her name is Emma. She was amazing, interacting with us, looking across the room and smiling when we smiled. She played with her toys (I guess she actually just chewed on them). I kissed her belly and nibbled on her toes and she laughed and cooed. God, I love that.
Babies make us fall in love. What is better than that?
So I was up early, not knowing what to expect from this new little person. She is 3 months old and her name is Emma. She was amazing, interacting with us, looking across the room and smiling when we smiled. She played with her toys (I guess she actually just chewed on them). I kissed her belly and nibbled on her toes and she laughed and cooed. God, I love that.
Babies make us fall in love. What is better than that?
Monday, August 18, 2008
Missing in Action
I've been missing for several days and I apologize. My laptop had to go into the shop again, and my pc is painfully slow, so I just didn't feel like dealing with it. So, in the meantime, I've been living my life and trying to pretend I've never heard of Cushing's, that I don't have limitations, and that so many people that I care about are not sick. It felt really good, I can't lie. I needed a reprieve for a bit, and I took it. I actually thought about going into hiding mode, never to return and never to again address the illness that has ruled my life for the past several years.
I've been walking every day. Every morning I get up and have my coffee and then go meet my friend and we walk 3 miles. We talk about everything on these walks....our husbands, our children, our prospective jobs and the heartache of losing our longtime jobs. (We did that together, too.) We check out the lake houses and claim the ones we want to buy when we win the lottery. (Mine is a very modest little house with a wrap around deck.) We make plans for the weekend. We plan menus. We huff and puff and discuss our health issues. She has terrible feet, has had two toes amputated. I have a painful mass in my calf. (Myxedema?) And we keep on trucking, keep on moving along, until we reach our destination. It is therapy. Physical AND emotional. I feel so much better when we are done, but some days it is really hard.
Summer's almost over here, you can feel it in the air. The thought of winter depresses me and I just want these days to continue. The future for us right now is scary. We both worry about losing our homes and not being able to pay the bills. But for an hour every morning we are solving all our problems, walking those 3 miles. We're enjoying the journey, not focusing on the destination.
I've been walking every day. Every morning I get up and have my coffee and then go meet my friend and we walk 3 miles. We talk about everything on these walks....our husbands, our children, our prospective jobs and the heartache of losing our longtime jobs. (We did that together, too.) We check out the lake houses and claim the ones we want to buy when we win the lottery. (Mine is a very modest little house with a wrap around deck.) We make plans for the weekend. We plan menus. We huff and puff and discuss our health issues. She has terrible feet, has had two toes amputated. I have a painful mass in my calf. (Myxedema?) And we keep on trucking, keep on moving along, until we reach our destination. It is therapy. Physical AND emotional. I feel so much better when we are done, but some days it is really hard.
Summer's almost over here, you can feel it in the air. The thought of winter depresses me and I just want these days to continue. The future for us right now is scary. We both worry about losing our homes and not being able to pay the bills. But for an hour every morning we are solving all our problems, walking those 3 miles. We're enjoying the journey, not focusing on the destination.
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