Should Have Seen It...

"I know of no other disease, potentially curable, that can lead to permanent disability and death. A disease doctors don't want to treat and one that they think is fine to spend years on "watchful waiting." I also don't understand why doctors think it is morally acceptable not to work to understand a disease in their expertise or complain that it is too hard, leaving the patient to their own devices to solve the problem on their own. I wish that we were treated by oncologists, because I think there would be different attitude." -Deb

Deb said it best. What Deb doesn't get into is the fact that many of us will go beyond broke trying to find help in far away states. Help that, if the doctor's took the time to learn, should be available within driving distance. If I as layman, can pick up a medical journal, or find one on google and read and understand what they are doing is wrong, what is their problem?

We should never have to become doctor, lawyer, lab tech, and insurance rep to get help, especially when we are already fighting an uphill battle. I tell you this, had it not been for my wife and our church, I would be gone. She had to fight to get me to surgery with everyone when I had given up because I couldn't fight anymore. The church helped get us to where we needed to go and would have to stay for awhile.

Now, I am still not well. I manage on a day to day, and hour to hour bases. One has to wonder how well I could have done had the doctors not failed to rescue me in a timely manner.

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Dear Me,

I just thought I would update you. I am still doing therapy once a week. They are adding speech therapy and a neuro psychologist to try and patch up more holes with talking, therapy, medicine. My problem solving skills are still there, but its hard to reach them and they are working on singular tasks. Tasks, like driving, are hard.

Earning a living isn't easy anymore. I have lost my ability to multi task, which you need building software. There are something that run a singular path, and I can do it slowly. I am not the hot shot super star programmer I once was. I am trying to find my place in the workforce, but it is hard when you work a few hours a week. I am so tired from the time I wake up till I go to bed, if I can sleep. On the days I sleep well, I sleep most of the day.

Miami Valley Hospital applied for a service dog for me. The dog will help me be more independent. It can pick things up I drop. Grab my medicine when I am to sick. It can go find help. It can do much more. I think it is a good idea, but two years to wait for one is a long time.

Certainly I am not the only one with a BLA or Addison's Disease to feel this bad? I have less energy and stamina now than before the surgery. In some ways I feel as bad or worse. How can that be? I was sick with Cushing's a long time and it really got bad for a few years. Is that why it is worse?

Time is all I have and time is what I am spending everyday. I am patiently waiting to get better and actively seeking ways to help with that. Things are improving, just not in the area's I need or want them to. I feel better than I did with Cushing's, generally. I can do things to fix the ickiness, like sleeping and taking meds that didn't work before.

Each day brings to reality that my daughter probably suffers with the same tumors. MRI scans seem to give life to the probability as well as two positive lab tests. You would think that would be enough, and probably in a lot of things it would. She doesn't face just a few more tests, but probably months or years of more testing.

Months will go by with negative tests, and then a positive. The positive will keep the doctors looking and the negative tests will cast doubt. Family history and the few positive tests are not enough. An 11 year old girl is sentenced to months and potentially years more of headaches, flu like illness, weight gain, body changes and more. In more advanced stages, it is bone loss, muscle loss, massive/many infections, diabetes, blood pressure problems, loss of vision, and more.

I shudder to think about the mental changes. I have been there. I know and I am worried. I know what it did to me. I know what is better and I know what is not. The longer this lasts, the worse it will get.

So each day, I get up to fight for her. It is a purpose, but it is one full of waiting and patience. There is only so much you can do. The doctor's are in control. We just have to know when to push and if the pushing doesn't work, the wisdom to get out and find someone else that will help. Me and Brooke are going to keep on truckin. Momma keeps us moving, lest we stop or quit.

Your Friend,
Us

ps
go to bed now.





***The author, Steven Owens, suffered from Cushing's Disease for a number of years. Years of testing led to brain surgery at MD Anderson Cancer Center, which failed, leading to a complete removal of adrenal glands 20 months later. Trading Cushing's Disease for Primary Adrenal Insufficiency/Addison's Disease, the author continues to pick up the pieces and try and get his daughter diagnosed. She exhibits the same symptoms, both physical and mental. They are very visual.***
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The "Before The Cure" series are items I wrote as I struggled with finding why I was sick and then finding a cure. Some of my writings were dark and dreary, but a lot of them were written to help me remember to have hope. Some of them were poetry. I am not a writer or poet. What I write comes from my heart and how I feel at the point in time I write.

The Broken Toy poem was written because people were really treating me, well, like a broken toy. We were missing family and I believe they were all struggling and trying to make sense of my sickness. I thought that this is how a broken toy must feel, if it could, and a poem was born. I hope you enjoy it.


The Broken Toy

I live in the silent toy box...
broken and alone.
I am the same toy I used to be,
I'm just missing a little foam.

Do you remember the golden days...
like Christmas morning at the tree?
I wonder now when you look,
what do you see left in me?

I am a broken toy...
does that make me worth less?
Just a few moments of your time,
surely I would feel blessed.

Don't look at me with scorn...
Don't look at me with disdain.
I am a broken toy,
but does it mean I feel no pain.

Copyright 2006-2009 Steve M Owens

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Life passes me by every hour. At first, it was still about Cushing's. It consumed me all the time, even after surgery and a cure from Cushing's Disease. I have slowly noticed there are some hours I don't remember having it. I know I don't feel well, but the reasons of it seem to either leave my mind or not matter. The weight loss. I remember why that is happening clearly though.

The weight loss started at about 5 lbs a month. In June, it went to 10lbs in three weeks. Now, 11 days later, I am losing a pound a day. The funny thing is, I am taking 40-60mg of cortef a day to stay out of AI and I still don't feel well.

I'm not complaining here because it feels good to loose. I am just wondering if this is a reversal of Cushing's or if Adrenal Insufficiency is a problem too. Hard to tell for me. I think it is probably both.

Cushing's Disease is a large overdose of steroids, usually man made, or in my case, my body made it. It causes massive weight gain in short amounts of time. It destroys the body and in some cases is just as harmful to the mind. My overdose is gone, my adrenals are no longer residing within me. I have Addison's Disease or Primary Adrenal Insufficiency, depending on who you ask. They both cause the same problems, but may be caused for different reasons.

I still feel bad, and really bad most of the time. Every change is a puzzle, every meal a concern for keeping it down. Dehydration is a real threat because I don't want to drink. I leave bottles on my desk to remind me what I have drank that day. I can not remember to eat, drink or take pills, but I use the tools we can think of to remind me.

As bad as that may sound, I am going on and trying to find my place in my new world. I don't work often, but I am trying to find innovative ways to weave in what I can do when I can do it. Life isn't easy for us, but we are living it in the modified fashion we need to do it in. We make adjustments to life and we go on. Work is a hard one to crack. With little energy or stamina as well as other problems, it is hard to do the few hours I do manage. We keep coming up with different ideas to try to help. I'm not giving up yet.

Living with Addison's is far better than dying with Cushing's. A path I avoided twice with the help of a family doctor who wouldn't quit on me, two very skilled surgeons, a researcher in California and a little known Cushing's doctor from Dayton, Ohio. Most of all, I owe a lot to my wife and kids who everyday look out for me and keep me moving.
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No one heard anything. They only remember Jason Gray’s face.

He stood outside the glass partition at the OSF St. Mary Medical Center nursery in Galesburg the afternoon of March 23 watching nurses weigh and measure his newborn son, Zeke. Tears streamed down his cheeks as he snapped photos of the moment. His smile was endless.

“He was just smiling and crying,” his mother, Pat Gray, said. “He was just so excited, just tears running down his face.”

He was a dad for 53 days. This would have been the 29-year-old’s first Father’s Day.

“He always knew he wouldn’t get to raise him,” Pat Gray said.

* * *

Jason Gray never wanted to leave Galesburg.

The family’s move to Knoxville was only six miles. It might as well been a continent.

“He didn’t want to move to Knoxville,” his mother said. “He hated it. .... He was so mad at me for so long over that.”

The day before Christmas break in 1987, Chris Gray, then a senior at Galesburg High School, stopped by Silas Willard Elementary School to get his brother after school. Jason was transferring to Knoxville the next semester and was sobbing in the car.

“He was really upset and in tears,“ Chris said. “It really affected me quite a bit.”

Chris was eight years older, and the age gap created a natural barrier between the brothers. But after that day, their relationship changed.

“I tried to look after him closer,” said Chris, who finished his senior year at Galesburg. “He was leaving the school he had gone to and was leaving his friends.”

As it turned out, things were not so bad in Knoxville.

In a matter of weeks, Jason migrated to a group of boys in Knoxville his age. He loved his life there. From her house on Westview Drive, Pat would glance outside her windows and watch Jason spill every ounce of his energy playing with the neighborhood boys on an abandoned grass lot nearby.

“It was all the boys in our neighborhood,” she said. “I could look out my window and every day they were either playing baseball, basketball, football. Every day. Twenty-four-seven, those boys were out there.

* * *

Kati Lamb was the one. Pat Gray knew this deep in her bones.

“He was hooked on her,” Jason’s mother said. “He had dated a few before her, but this was it.”

At 16, Kati and Jason met while cruising the Galesburg strip down Henderson and Main streets one summer night. They had mutual friends dating and they soon fell into place.

They were opposites in many ways: Kati was a stellar student who would eventually study French and International Studies at Knox College, while Jason played the role of the jock who studied only out of necessity.

“She brought out the best in him. He was a smart guy but he didn’t like to study. If he liked the subject, he was very good at it. But if he didn’t, he wasn’t very motivated,” Chris said. “But she was a very good student and she had an excellent influence on him. There were questions whether he could get into college or not but he ended up going to (Carl Sandburg College and Western Illinois) and getting his degree in four years, faster than most of his friends.

“That was Kati’s influence on him.”

Jason rubbed off on Kati, too.

“She was a lot more serious and when they got together, she relaxed more and her sense of humor blossomed,” Chris said. “They were just a perfect match.”

Night after night, the couple hung out. “From the moment they met, they were inseparable almost to the point where the guys were like, ‘Where’s our best buddy?’” said Ryan Brown, a close high school friend. “They were head over heels for each other right away. They were madly in love and didn’t care who knew.”

* * *

Jason was a three-sport athlete at Knoxville. He was best in football, he loved basketball the most and the one he actually played in community college at Carl Sandburg was baseball.

“It was sort of a strange combination of things,” Chris said.

“He wasn’t always concerned about wins and losses. He just had fun. He worked hard and wasn’t the star of the team, but he loved being part of a team,” Chris said.

That’s the way Brown remembered him.

Their senior year in 1998, Jason was the starting first baseman for Knoxville. In one game, an opponent lofted a ball toward the foul line, which was set off by an orange, temporary snow fence. Jason gave chase and crashed through the flimsy plastic barrier.

Everyone could see Jason on the ground — and baseball on the ground near him. But he scrambled to scoop the ball in his glove and he popped up, coolly showing it off in the webbing.

“He obviously didn’t catch the ball but he jumped up like he caught it,” Brown said, chuckling at the thought 11 years later.

His teammates and the crowd burst into laughter. So did the ump.

“He was probably the most fun guy I ever knew,” said Brown, now the boys basketball coach at Annawan.

* * *

The setting for the big question was a hotel in Muscatine, Iowa.

In April 2002, Jason called Canterbury FantaSuites. The hotel was well-known for its theme rooms and Jason wondered if an Africa room existed there. Kati had spent a summer on the continent as a student at Knox and the memory was dear to her.

No, the staff told him. But they did have a jungle room.

Good enough, he figured. But upon arrival, they walked into a gaudy room with a zebra head jutting out of the wall above the bed.

“We had to sleep at the other end of the bed because it was too weird,” Kati said.
It didn’t stop her from accepting his proposal.

* * *

On June 7, 2003, the couple was married in a picture-perfect ceremony at the gazebo in Lincoln Park in Galesburg, in front of a massive group of friends and family.

The reception at the Galesburg American Legion was Hawaiian-themed, at the request of the groom. He wanted the guests wearing flip-flops and island shirts, not stuffy dress clothes.

“He was so laid back, all the time,” Kati said.

* * *

Jason’s body soon began acting strangely. He bloated with water weight. His blood pressure elevated to hugely abnormal levels. His bone mass deteriorated.

On Nov. 26, 2004, the news came. He had tumors on his liver and pancreas. Kati remembers the date easily. It was her 25th birthday.

Two months later he was diagnosed with neuroendocrine tumors, exceedingly rare for a person younger than 60. The tumors caused him to have Cushing’s syndrome and the disorder exposed him to high levels of the hormone cortisol, explaining his symptoms.

“Anything bad that could happen, happens with that,” Kati said.

The couple began going to the Mayo Clinic in Rochester, Minn. In April 2004, he learned the tumors existed on both ends of his liver. Surgery was not an option.

He was dying.

“There wasn’t anything they could do,” Kati said.

* * *

In January 2006, doctors removed his adrenal glands to stop the swings in water weight and other symptoms. The day after the surgery, his weight plummeted. Jason’s muscles had atrophied to the point where he could not move on his own power. He was miserable.

But his humor was undiminished.

“Can you weigh me? I’m curious because I think I lost a lot of weight,” Jason asked the Mayo Clinic staff.

He was down more than 100 pounds — in one day.

“Hey,” Jason said, “I lost an Olsen twin.”

* * *

With Jason sick, the couple tried to get pregnant through in vitro fertilization.

In July, they learned that Kati was pregnant but their enthusiasm was tempered. It was one year after another pregnancy had miscarried, and they told only close friends and family of this latest attempt.

“When we found out it worked, we were hesitantly excited because it worked one other time before and we lost it,” Kati said.

The threshold after which couples could feel safe was generally regarded as 16 weeks. In October, their fears were allayed. The date had passed.

“It better be a boy,” Jason told Kati.

A month later Kati had an ultrasound with Jason at her side. It was Nov. 26, another of Kati’s birthdays spent in the hospital.

“I don’t give numbers,” the sinographer told the couple. “I don’t give guarantees, but I think it’s a boy.”

“How sure?” Jason asked.

“I just said I don’t give numbers,” she said.

“But if you were going to ...”

“But I don’t.”

“So we’re talking like 80 percent?” Jason said.

“Look,” the sinographer said, showing Jason the pictures on the ultrasound.

Boy parts.

“Oh,” Jason said, “OK.”

Later that day, Jason looked over at Kati.

“At least it’s good news on your birthday,” he said.

* * *

Before his diagnosis, Jason started coaching. He helped out at his old high school by working with the sophomore boys basketball team. He was a natural with kids.

After he turned ill, coaching became his haven. Many people questioned him about using the time he had left coaching, but the job meant three hours daily for five months where his mind was filled with basketball minutiae.

In those final years, the couple lived as normally as possible.

Jason continued to work at Sears in the Sandburg Mall and mix in some hours as a substitute teacher with the Knoxville School District. He was obviously sick. His skin was ashy, the deterioration of his once-stout body striking. But he rarely talked of his problems.

“He didn’t want the pity. He wanted to just live his life best he could,” Pat Gray said.

Jason stayed at Knoxville for five years, but he missed most of 2006 as he received treatment at the Mayo Clinic. In spring 2008, the head boys basketball job opened up. Jason threw his name in. But the School Board instead hired Mark Simpson, who played at AlWood High School the late 1990s.

But Jason wouldn’t be out of the game long.

* * *

Mike Reynolds was hired to revive the Galesburg boys basketball program that same spring and was looking for qualified volunteers to help on his staff.

In September, Reynolds contacted Jason about meeting with him and sophomore coach Ryan Hart for an interview. Jason was unsure. He would be a late addition and was an out-of-towner.

At least since the third grade.

“He went to Knoxville. He graduated from Knoxville. He coached at Knoxville. He was used to Knoxville,” Kati said. “He was all worried.”

After the short meeting, Reynolds hired Jason as a volunteer sophomore assistant on Sept. 25.

“You could tell he was comfortable talking about the game,” Reynolds said. “You could see he had a lot of experience because he had a comfort level in being able to talk about the game.”

* * *

Kati understood Jason’s desire to coach. But she had one condition.

Kati demanded that Jason inform at least one of the coaching staff members that he was sick.

She traveled to most of the games, but if she missed one, a coach needed to know about Jason in case he passed out. Without his adrenal glands, his body lacked the natural jumper-cables needed to restart. A shot was necessary to revive him or he would be dead in a matter of minutes.

One day, Jason told Kati he had told Hart.

And what did he say, Kati asked.

“That’s crazy,” Jason said. It sounded like something Hart would say.

But that wasn’t the truth. He never told Hart — or anyone else.

He died months later not knowing the Silver Streaks coaching staff had become aware of his health issues through the grapevine. But the other coaches just figured if Jason didn’t want to talk about it, neither should they.

“We were just like, ‘If he doesn’t want to tell us, we’re not going to pry,’” Hart said.

* * *

After Jason arrived, few of the sophomores wanted to ride with Hart to games. The coaches took two vehicles on the road, Hart driving one and Jason handling the other. Jason was the preferred choice.

“The kids loved him,” Hart said.

Jason’s humor and passion made him a favorite. As an assistant, he was allowed to play the role of the good guy. He was a natural. He was the coach who cut through the seriousness and lent his ears to venting teens.

“Even if things went bad, he would have a joke,” said incoming Galesburg junior Andrew Steck, whose grandmother worked with Jason at Sears. “If somebody made a bad play or funny play, he would have a joke.”

For a man at first worried about connecting with those in the program, Jason grew incredibly close to the players and coaches in his six months there.

“I really appreciated what the Galesburg coaching staff did for Jason. He loved to coach. When I heard Coach Reynolds was going to have him help out, I thought that was a perfect scenario,” Chris Gray said. “I could not tell those guys enough how much I appreciate them giving him that opportunity. He had a great experience.”

* * *

Jason was sitting at home when the call came.

A Caesarean section was scheduled for that Friday but Kati awoke the Monday before with cramps. Hours later at work, her water broke. The baby was coming early. He had prepared for years for that day, but Jason freaked out.

“We almost had to stop by the mall for him to throw up,” Kati said. “He was so nervous.”

But his nerves calmed. At St. Mary Medical Center, he looked after Kati. Was she comfortable? Did she need anything? Did he need to talk to the doctors?

At 1:42 p.m. on March 23, their baby boy was born. They named him Zeke, a name the couple agreed “was somewhat normal and not too crazy,” Kati said. He weighed a shade under seven pounds.

“He came early,” Kati said. “He didn’t want to wait.”

They hadn’t much time left.

* * *

Six weeks later at St. Mary Medical Center, Jason hadn’t slept or eaten in days. By then, the right side of his diaphragm was paralyzed and he could barely breathe. He needed an oxygen tank, cranked to its highest output. Walking a few feet was an exhausting chore.

His insides ached and he flopped constantly in bed. Pat Gray would place a pillow between his legs, but the comfort was fleeting. In a matter of minutes, he would toss and turn again.

“It was just constant,” Pat said of the pain.

In the evening of May 14, Kati brought Zeke to visit his father. Jason saw his son for an hour before he became too tired.

“Go ahead and take him home,” Jason told Kati.

“Would you like me to come back and stay with you?” Kati asked.

“Yes.”

* * *

Jason Gray died five minutes before midnight on May 14, with Kati and Chris at his bedside.

The next morning, Hart awoke to several text messages on his phone. He guessed the bad news. Reynolds received a phone call from Kati after second period at Galesburg High School ended. Reynolds scheduled a team meeting in the boys locker room to break the news. A counselor was there with the team members, many of whom never even knew Jason was dying.

“That was something they needed to be told by me and not the newspaper. It was good for them to hear it from somebody who’s familiar,” Reynolds said. “It was a rough day. It was hard because you have to try to put on a strong face because you lead the program, but it hit pretty close to home for us.”

After telling the team, he pulled Steck off to the side. He was one of the players closest to Jason.

“When Coach Reynolds told us, I knew I had lost a good friend,” Steck said.

A month after Jason’s death, Reynolds has started working on early plans for a memorial dinner. Nothing’s official yet, but Reynolds wants to hold the event before the first Western Big 6 conference game next season.

“We just want his legacy and his dedication to our program to not go unnoticed,” Reynolds said.

* * *

In the Knoxville house the couple once occupied together, Kati has a letter Jason wrote to Zeke stored away. In it, Jason talks to the son he knew for seven weeks.

“He’ll have that when he gets a little older,” Kati said.

Zeke lay in her lap, cooing, as Kati recalled Jason’s life last week in that house.

“I don’t have time to think a lot about it. The baby requires all your attention,” said Kati, 29.

She paused.

“But he looks just like him. He looks just like him. It definitely has kept my mind off it. I don’t have time to sit there and stew. I have the baby. He has helped all of us.”

In Zeke, a piece of Jason lives on.

“Thank God for that little baby,” Chris Gray said. “It’s a part of Jason. We can watch him grow. It’s a memento that he left us . . . something for us to remember him.”

zcreglow@register-mail.com

Original Article
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Many people with Cushing's end up having to become a doctor, lab tech, medical researcher and lawyer to get a cure. It is a fact. Most people with Cushing's could swear to that fact. We accept it and find ways around road blocks to get to a point where someone will help us. This story is about a girl, aged 18, who out smarted her doctors to find herself a diagnosis. While it isn't about, Cushing's, it is about a problem many face within the realm of modern medicine.


When doctors didn't give a Washington state high school student the answers she wanted, she took matters into her own hands.

Eighteen-year-old Jessica Terry, brought slides of her own intestinal tissue into her AP science class and correctly diagnosed herself with Crohn's disease. "It's weird I had to solve my own medical problem," Terry told CNN affiliate KOMO. "There were just no answers anywhere ... I was always sick."

For years she went from doctor to doctor complaining of vomiting, diarrhea, weight loss and stomach pains. They said she had irritable bowel syndrome. They said she had colitis. They said the slides of her intestinal tissue were fine, but she knew that wasn't right.

"Not knowing much about a disease you're growing up with is not only nerve-wracking, but it's confusing," Terry told the Sammamish Reporter.

So when local pathologists stopped in to teach students in her Biomedical Problems class how to analyze slides, the high school senior decided to give her own intestines a look.

What she found? A large dark area showing inflammation, otherwise known as a granuloma--a sure sign of the intestinal disease.

To confirm her suspicion, she checked in with her teacher. "'Ms. Welch! Ms. Welch! Come over here. I think I've got something!" she shouted. Mary Margaret Welch, who has spent 17 years teaching science at Eastside Catholic School, had a feeling Terry was on to something.

"I snapped a picture of it on the microscope and e-mailed it to the pathologist," Welch said. "Within 24 hours, he sent back an e-mail saying yes, this is a granuloma."

The finding impressed doctors. "Granulomas are oftentimes very hard to find and not always even present at all," said Dr. Corey Siegel, a bowel disease specialist at Dartmouth-Hitchcock Medical Center. "I commend Jessica for her meticulous work."

While Terry's glad to finally have answers, she now knows she'll have a tough road ahead. Crohn's disease is an incurable, though treatable condition caused by inflammation in the intestines. It can cause malnutrition, ulcers, pain and discomfort.

Still, she looks towards the future with optimism. She'll begin nursing school in the fall and hopes to have a kid's book on Crohn's disease published.

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I never really had problems mentally with Cushing's, at first. I would read about this from people on here and would skim over it. It didn't pertain to me and actually, I wondered if it was Cushing's causing it at all. I never wanted to believe Cushing's caused all this "stuff". By stuff I mean the mental and physical manifestations of Cushing's Disease that aren't generally spelled out in the symptom's charts. It wasn't happening to me, so some of it was hard to believe, if I am being honest.

Here I sit years later after two surgeries and one that finally cured me 4 months ago next week. I went down hill in the later half of 2008. That is physically and mentally. The mental stuff got worse in June 2008 or there about. I think I barely held my sanity and finally told the doctor in November of 2008 some of what was going on. It was the first time the wife had heard of it. I am not so sure I haven't slipped over the edge sometimes.

Fast forward to January, 2009 and the BLA. I expected to feel better and I did. However, the mental side of things is really no better. It is something I hate to share but I feel people need to know these things happen. It is real because my mind thinks it is, even if I know in my heart it isn't. It is not how I expected my cure to go and it certainly isn't something I like to admit.

Life is better post Cushing's and I expect it to continue to improve. Better is a relative term. Just going one day at a time. I hope I can wake up one day and take my cortef and florinef and forget Cushing's is the reason why. You got to have goals, right? Read more!

Having something like Cushing's Disease is certainly easier being the patient. I don't mean in the sense that you feeling bad makes it easier. I am talking more in terms of emotional and all the baggage that comes with having it or having someone you love have a terrible illness or disease. I always told my wife that I was glad I was sick. I could never stand to see someone I love have this. I should have known fate was fickle.

My 10 year old daughter is showing signs of the same disease. Her symptoms are more pronounced. I don't mean the ones you can't see, although those seem to be getting worse. I am talking about the physical ones that can be. Other things, which if you have Cushing's you know, are starting as well. It is a terrible slide she is on and it is intimately familiar to our family.

You would have thought fate would give our door a pass when it comes to rare diseases for awhile. Fate came knocking several weeks ago when our doctor handed us 20 kits to test for Cushing's Disease in my daughter. Know I know what it feels like from the other side. It is much worse watching it happen than having it happen to you, in some ways. I watch the denial in my wife's voice, but I can look into her eyes and I know she knows.

We have one family we know (and love!) that has the same problem. Father, son and daughter all have Cushing's Disease. The mother fought hard to get the help they needed. We are inspired by their story and know we will make it through this once again.

Knowing how bad it can get, I would gladly take the Cushing's from her and live it again if I could. I don't know any parent who wouldn't It was much easier living it than looking at the terrible disease from the outside and wondering about the one you love. I have looked at it from both sides now.

This is the part where I could say it isn't fair. We, as a family, decided long ago fair has no part in it. We will spend our energy on keeping focused and getting well. Not on negative things we have no control over. If we save our energy, we can use it on the really bad days. Everything about this disease is awful. I can think of no other disease that takes months or years of testing to prove you have it and then to prove if it is a brain tumor, lung tumor, or some other tumor. The reality of Cushing's is that the patient sometimes has to get so sick before the tests start picking up the disease. Nothing is ever easy about Cushing's Disease. Read more!

Dear My chronic condition:

I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that
you have given me, things I never could have experienced had you not come to possess my body.

You have given me:

• strengthened prayer life and increased dependence on God's grace and strenth, rather than my own
• renewed friendship with strong, close, true friends.
• appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy".
• growth in character, perseverance, and hope.
• inspiration for to help others.
• more compassion for others who are suffering.
• better knowledge of my own body & health.
• a reason to eat more nutritiously and take care of myself.
• reasons to rest when I need it.
  

You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.

Sincerely,
ME

Article written by Brandi Lasnick, © 2007 butyoudontlooksick.com
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To whom it may concern:

Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time.

--Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repetoire of pain categories, so updates are to be expected.

--Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.

--Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)

--Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to
understand what it is like to be drunk and to have a hangover.

--Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.

In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:

The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs.

Tthe ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.

The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.

The ability to play and run with your children like you did before.

The ability to have a "normal" social life.

The ability to accumulate sick days at work/ school to earn the perfect attendance bonus.

As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.

Sincerely,
Your chronic condition


Article written by Brandi Lasnick, © 2007 butyoudontlooksick.com

Thanks to Kim for sharing this on Facebook with many of us...I thought it good to repost! Read more!

When I think back prior to my surgery, had it been entirely in my control, I would have never went to surgery for the BLA. I think the cortisol had gotten that out of control that I would not have had the sense to do it. Like the doctor told me, I would always find a reason. A reason to not trust the doctor, the hospital or something. The Cushing's Disease was winning.

I sat in the room the morning of my surgery and tried to think of something to stop it. I knew for a fact the Cushing's Disease was getting to a point where the level of damage being done was drastic. The doctor(s) in a round about way were telling me I was going to die without treatment and soon...not years from now. MD Anderson told us the same thing. The Pit surgery put it hold for awhile, but it came back and it came back hard. I knew all that and I still wanted to run.

I wonder what it was about the Cushing's that made me feel that way. Did the high cortisol affect the mind? Or was it something from living with so much stress from a chronic illness for almost a decade? Was it really just something from the disease process or a character flaw and my fault? I didn't know then, and I am barely understanding it now. I know now that with this whole process there are things that happen to us beyond what the disease causes. Living though the process of chronic illness comes with it's own baggage and a lot of it isn't healthy.

Healing from Cushing's Disease began when I was cured with the bilateral adrenalectomy (BLA). I knew then that the muscles and bones would take months to a few years to heal. I found the help of physical and occupational therapy to help. In finding help, these people also opened my eyes to other things. They taught me that there is a disease process and that things we don't expect happens because of chronic illness.

However, I didn't know that curing Cushing's came with other unclaimed baggage. I am just now realizing what comes in the bags. It is a struggle. There are more things to fix than I had realized. Most of them, with good food, rest and love, will heal with time. I speak of more than just the body. I speak of mind, body, and soul. That won't fix everything and wishing it wasn't there won't make it go away.

There are many things left in the baggage. Instead of rooting through it and making a mess, I have decided to pull one thing out at a time and deal with it. It is my hope that I can concentrate well on fixing one problem at a time. Sooner or later, that bag marked Cushing's will be empty and Cushing's will be a memory. Time heals all wounds.
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I never really ever thought I would get sick like I was. It is hard to explain how you feel when you are sick all the time. One thing I can say, the pain and roughness becomes normal. You get used to all but the worse parts. It becomes just part of the day. Just something to get through till you feel better. Something for a pill to fix, if it can.

Oh, I always wondered what it would be like when I was healthy. What would cancer be like? Does it hurt? Would I have the strength to fight it off and win? Would I have strength if it looked like I was going to lose? I am sure most people entertain those thoughts, especially if and when they have family members fighting these types of diseases.

I never thought I would actually get something like this, let alone a rare disease like Cushing's Disease. It is like nothing I ever imagined. You think, that if you get sick, you go to the doctor, they diagnose you and you get better, or at least get treatment and eventually get better. Not so with Cushing's and I imagine not so with a lot of rare diseases.

It would take years to diagnose and I would lose a lot of who I was. I would face the loss of my ability to be mobile, my ability to think, to make love to my wife, my military career, and I would end up lost in my own mind. Cushing's causes high cortisol and it plays hell on the body and mind. It would end up destroying my bones, my teeth, my muscles and cause mental illness like symptoms. I have a hard time talking about that. I will save it for another day. The rawness of it still burns.

Once I had the diagnosis of Cushing's Disease (2006), it would take almost 18 months to get to the first surgery. Having a diagnosis really meant they just "thought" it was Cushing's, it would take literally dozens of more tests to "confirm" it in their minds. By October, 2007 I was fully diagnosed and had the first surgery to attempt a cure. The doctors at MD Anderson performed brain surgery to remove a pituitary tumor, the cause of my Cushing's Disease. It failed. I had a brief remission but it came back.

By June, 2008 I was on ketoconazole. Ketoconazole is used for the treatment of fungal infections. In larger doses, it is a chemo drug used to treat cancer and Cushing's. I used this until December 2008 in the hopes the body would mend some before the next surgery. It was not without its own problems, but I have to admit it did work to a degree.

On January 30th, 2009 I had a Bilateral Adrenalectomy or BLA. This is the removal of both adrenal glands. It stops the brain tumor from being able to send signals to the adrenal to overproduce cortisol. Cortisol is a natural steroid produced by the adrenal glands. Cushing's is the overproduction of Cortisol. I will take pills to replace what my body no longer can produce. Without the pills, the body would go into shock and quite quickly you would have a fatal response because of the adrenal insufficiency event. Not to fear, I have plenty of pills!

So I have come full circle. I have been tested, diagnosed, treated and cured of Cushing's Disease. Addison's Disease now replaces the old because of the BLA. While I have come full circle, we know that Cushing's Disease took years to damage body and mind. It will take many months to several years to undo what was damaged. Somethings will not go back to normal. No one can say what that is. Every patient is different.

I don't wonder what it would be like to have something like cancer anymore. One disease was enough. It is a disease like no other. One where you have to fight the doctors to get a diagnosis. One you have to fight the disease not to give up and let it win. One where the chance of a surgical cure is low unless they remove your adrenal glands. One where you are likely to trade one disease for another to get a cure. It is like no other alright. I fought Cushing's Disease for over 7 years. On January 30th, my family won the war. We have finally beat Cushing's. Now to heal body and mind...
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