Pumpkin Patch/Carving Pumpkins

Thursday night we went to the "Pumpkin Patch" We played in the fort and picked out the best pumpkins. Our neighbors joined us to carve the pumpkins. Everyone had a great time. I actually cooked pumpkin seeds for the first time in a long time. I forgot how good they taste coming out of the oven. Tonight is trick or treating!!!!!!!

Learning From Each Other

Gabe decided Ben needed a lesson in how to spot an M-n-M's in case he were to ever encounter them. He was so cute. He said Ben I can have these YOU can not.
I absolutely LOVE the fact that Ben can read to his brother. He is going to start reading to Gabe more regularly before bedtime. Notice the book he is reading to him.. Richard Scarry. Although his books are funny, to a parent they are really annoying to read and follow. We are sooo proud of Ben. He truly loves helping Gabe and loves being his BIG brother.

Part 3 of 3- People Say the Darndest Things

Cushings Disease is a rare disorder. According to statistics, 2 to 3 cases per million are reported each year. On the average it takes a patient 2-5 years to get a confirmed diagnoses. Becuase Cushings is so rare, most doctors will never see a case of Cushings in their entire career. Test results are not always black and white. The emotional effects of having a chronic disease are distressing and demoralizing. The problem- as you get sicker and sicker, and you explain these symptoms to your doctor, you are dismissed as a hypochondriac who needs to exercise more. In this post I have included actual quotes from my doctors. Some of them I wish I could but their names in BIG letters next to the quote. BUT- I actually do not put blame, or hold resentment for those who dismissed my symptoms or made me feel crazy. They learned from my case and hopefully, it will prevent it from happening to anyone else. Instead- I hope if they are ever faced with someone like me(is that possible?) they remember my case. I was not a black and white case.

The following are some quotes:

"...of course, she has read everything on the internet, and decided she has Cushings Disease..."May 19, 2007

The same doctor-"...she needs to put some focus into the appropriate diet and exercise, obviously..."

"...If she could lose some weight, I think that would probabaly be a boost to her mood..." July 24, 2007

"I had a long discussion with Mrs. Kahl and her husband. She continues to be very distressed by her symptoms...she has been unresponsive to multiple treatments with various antideppressent medications. The biochemistry is unusual in that her ACTH is presistently elevated. Her cortisol levels are lowish and mostly supressible but do not suppress to zero. I informed her that the likelyhood that her symptoms were realted to cushings syndrome is low-probably less than 15-25% and therefore surgery on the pituitary to remove the adenoma would not be exspected to cure her symptoms. She is quite persistent however and would like to visit with a surgeon to consider that option.

THE SAME DOCTOR AFTER MY SURGEY. THIS WAS AFTER MY FOLLOW UP IN JULY OF 2008....

"...Mrs Kahl had surgery by Dr._____ on April of this year for a pituitary adenoma causing Cushings Disease. The pathology was positive for a ACTH staining adenoma. Her pre surgical biochemical testing was a bit misleading, but her course since then has been very indicitive of resolving Cushings Disease..."

After my surgey and during the recovery process, I was mad at this particular doctor, He told me I was overweight, depressed, he ABSOLUTELY did not believe me. Before this follow up visit I kept imagining our meeting when he actually SAW me. Remember- between April of 2008-July of 2008 -60 of the 75 punds were gone. It was kind of just sucked away. After surgery it was like someone put a pin in me and I was deflated. And I was happy- life was good- I FELT good for the first time in a LONG time! There was no diet, no exercise involved. Walking into the room, I felt vindicated and I was going to tell him so. When I looked at him and he at me, i know we could both TELL what each other was thinking. ME- Look at me!! Look at me!!!! I am down FIVE SIZES since our last meeting, Wait look at Me closer. I deflated. I'm sorry, did you say I don't have Cushings Disease..." DOCTOR- I should not say anything to this crazy woman, let her take the lead- Oh No her husband looks mad- I hope her husband doesn't punch me in the face.. Where are those kids, they always bring their kids...this is not good." The kids are waiting out in the hallway until their daddy punches me. Breathe..."

All joking aside- I really saw in my doctors face he felt bad. As a docotr they should not and won't admit wrongs. Anyway- he is human- he makes mistakes and like he said, I was not the typical case. I do not blame anyone. As a matter of fact, I still pray everynight for my doctors there. I pray that they have the strength to see each new case as an individual to learn from past cases and move on. and I hope, on occassion, like when there is someone who DOESN'T present in black and white, that they think of my case. Done. Time to move on! I keep moving forward, there is no time for ill feelings.

And then it came- two weeks later- The letter from the Mayo Clinic which said:

Our final diagnoses is

> Cushings Disease

And I said "AMEN!!!!!!!"

Part 2- The Power of Prayer

It's funny, how in the midst of adversity, people have events they say truly shaped their lives, made them different, caused them to live differently. It sounds so cliche' so- well- Oprah opening, But REALLY, life events do change who you are, who you are to become, and what I have found is that sometimes God whispers and sometimes he shouts. But- at all times he is listening and he cares.

For me, my "life moment" wasn't really a moment, but a series of events leading up to my "moment" My AMEN!

In my previous post, I mentioned how in February of 2008, I was at my worst. It took a lot of effort to wake up- stay up or really to even act interested in daily life activities. Add a husband and 2 kids to the mix and you have got a major problem. BUT- during that time, I also had a once in a lifetime opportunity to travel to Brazil with my friend Fabi. Could I really fly overseas, leave my children, and keep up with Fabi?(She has more energy that most people) How could I not go? so God WHISPERED, "Go"

Brazil is a beautiful, wonderful place. So busy- full of energy- even the beaches in Brazil have this energy. I believe Brazilians life their lives full of passion and faith you do not see everywhere. Their contrast stuck me- so full of energy- but yet laid back, there is no rushing about. On one particular day Fabi, her sister Juliana, and 4 month old Sofia took me on the subway to go to a market. After getting off at the stop, I started to become aware, we did not get off at the right spot. (Fabi and Juliana started speaking Portuguese, quickly to each other- not that I could have understood even the slow version) I am standing there not a concern in the world except I can not understand a word they are saying to each other. The reason I am telling you this is because this is not where we planned to be.

We walked up the steps and right there was Sao Bento, the Catholic Monastery in the middle of a huge city. Juliana decided this would be the perfect place to feed Sofia. I only have one word to describe Sao Bento. Breathtaking- not only to the eyes but the ears It was stunning, the monks were chanting there was- again- that energy-unlike anything I had ever felt.

"God, I hear you- your whisper is with me."

As I began to walk around, I was amazed at the peaceful feeling, I always have that upon entering a church but this was pure peace. There were different niches where there were different statues of saints, all the way around the perimeter of the church. There were a lot. It was then that God chose to shout.I absolutely felt a compelling need to stop as I approach this particular statue. I felt it- this is exactly where I am suppose to be. When I say this aloud, it sounds so dramatic, but it is so real to me, I quite literally sunk to my knees. and I prayed. Now, I wish I could say I had this quite beautiful moment but really it wasn't. Inside I was a screaming, crazy lady and quite selfish as well. I said(hopefully not out loud),"This is about me! ME! ME! ME!! Take this stupid tumor out of my head. I am done. I can't feel this cruddy anymore, you have to believe me that I have SOMETHING wrong, because the doctors don't believe me. Help!! AMEN! I made got up, made a donation in the container, and continued with my day but I always felt this strength that day. It was a very happy day for me. I had calm I had not had in over a year. This is the day God shouted out to me.

Upon returning from Brazil, I could not get this event out of my mind. Sao Bento was a highlight of my trip- and we just happened to end up there. I described the statue to my Mom one day and she said it sounds like that is the Infant Jesus of Prague. So I did what anyone would have done- I googled it- Up came the picture and the picture matched the statue. The Christ Child dressed very regally and under the picture it said: Holy Infant of Good Health. I felt my breath stop- OK God I hear you. I could have stopped at ANY of the statues of Saints, I chose this one. I knew My prayers were being answered. and I really have no words except comfort. I felt it.

Fast forward 2 months and I am back at the Mayo Clinic- I had been praying a Novena Prayer
for the previous 7 days, with 2 more prayers to complete the novena. I wanted the last day of the prayer to be on the last day of appointments.

In the morning, I had my first appointment with my endocrinologist I wish I could say I showed up he hugged me and said Lets remove that darn tumor but he didn't, instead he looked me straight in the eye and said Mary, I think you are just clinically depressed. I lost it- I started saying the craziest things. Oh yeah buddy I AM depressed, I gained 75 pounds this year, i don't like anyone or anything and oh yeah no one believes me so basically- I am not leaving until you help me ( I am so lucky they did not haul me away) This exchange actually included me digging my heals into the carpet and defiantly crossing my arms, I am quite surprised i didn't shout "SO THERE!" But God continued to speak- only this time he whispered to my doctor- Help her. because my doctor said, come back this afternoon, I will get you an appointment with the neurologist, please bring your husband. By the time I returned to the hotel, I was a sobbing mess, Poor Cliff(the van driver- we were now on a first name basis) he just said nothing- he knew, I like to think Cliff also said a prayer for me at that point, I hope so. I saw Kevin and the kids swimming (Yeah Spring Break at the Mayo-so lucky) but i went straight to the room, I was about to have a breakdown and I needed to be alone. I remember sitting on the floor of the bathroom(Gross) and crying so hard I could barely see the paper to say my last prayer of the novena. I was indeed hysterical, but not hopeless, I knew, even then my prayers were being heard. When I returned that afternoon with Kevin, I was calm and praying That a doctor would walk through that door and save me from this nightmare, and honestly, that's exactly what happened. he said, in part, You have a tumor, it is my job to take things like that out. Your not old and ill(relatively speaking) Lets get rid of it. How about 5:45 TOMORROW? We agreed immediately and he left the room. Kevin and I had a panic moment. we are 8 hours from home, Our family is no where near us, the boys are here, this is not something a 6& 3 year old should witness. What now??? We have friends that live in Maple Grove and hour from Rochester, The Baumgartners, who are Gabe's Godparents. But here is the thing- this family travels to more far away places that anyone we know- will they even be home? As I called I prayed- Please be home and they were and they dropped everything to care for our boys and even had a wonderful meal for us the night before surgery- Again- prayers are answered!!!

After my surgery and subsequent recovery I really began to think of everything that had occurred. I will never ever doubt for a minute that God answered my prayers, he listened. He showed me in so many ways that He is always with me weather he is whispering or shouting, I know he is there for me, because I matter to him. He wants me to talk to him and this whole experience has taught me. he will be listening. Always.

AMEN!

Cushings Disease Update

I recently had a follow up with my endocrinologist here. So my cushings disease has really been on my mind lately and really how much impact it has on my life. It has affected me in every way- emotionally, spiritually, financially, and physically. I know I will have it for life- surgery, and drug therapy only put it into remission-it's never gone. This July my doctor said mine was out of remission after just having surgery in April of 2008. BUT-during my follow up visit it was determined that my levels were actually decreasing again. Cortisol is a very funny thing- It's vital for the body- it maintains blood pressure, cardiovascular function, balances the effects of insulin but really its most important job is helping your body respond to stress. That is why blood work is so tricky. So for now- no new tumor visible- levels not normal but acceptable, still no weight gain(most important to me- I know it's crazy!) I've decided to put down my whole story with cushings so far. I hope by reading this(Be prepared, its a 3 part series and this is only part 1) it will help you to understand this disease, to support the cause in research and to understand me a little better. Part 1 of my story is an e mail I sent out on July 31, 2008. I will write it here again. Please know during the writing of this original e mail, I looked to a lot of cushing survivors so I could get the details right. One post on a Cushings board was from a lady named Katie, for whom explained cushings the best her post really helped in drafting this e mail

July,31,2008

Dear Family and Friends,

The power of prayer is evident as I sit here and write this letter to all of you. I have just returned for the Mayo Clinic where I had my follow up with my endocrinologist and neurologist and it is official, the tumor is gone They saw no signs of residual tumor and from all physical and medical tests, it appears I am cured of my Cushings disease! Although the re occurrence rate is 10-20% I am confident, I have beat this ugly disease.

This has been such a long and difficult process for both me and my family, we simply could not have done it without your continued support and prayers. We have had so many people praying for us we could feel God's love surrounding us everyday.

Let me do a recap of our journey with Cushings. In 2007 it was discovered I had an 8mm tumor on my pituitary gland. This, along with a mild elevation of my ACTH sent me to the Mayo Clinic in Rochester MN. After receiving news of the tumor and setting up that appointment, I, of course, googled my symptoms into the computer. What kept appearing was Cushings disease. Cushings disease is a rarely diagnosed endocrine disorder, characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands and it is vital to regulate the bodies cardiovascular functions and metabolism and to boost the immune system. But its most important job is to help the body respond to stress. People with Cushings Disease live life with too much cortisol for their bodies as a result of a hormone secreting tumor. Mine was located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of fight or flight which ravages the body and tears down the body's major systems including muscoluskeletal, endocrine, etc.

During my initial visit to the Mayo, they decided to take a wait and see approach- to see if new symptoms appear or if the tumor grows That was July of 2007.

By February of 2008, I was miserable. Imagine that in the space of a year, you become unrecognizable to this around you and even to yourself. I was dealing with Crushing fatigue, MAJOR weight gain and muscle weakness just to name a few. I just no longer felt myself with regards to energy.

I returned to the Mayo Clinic in April of 2008. They decided I would undergo transsphenoidal surgery to remove the tumor. At this point my endocrinologist said he would be very shocked if I had Cushings Disease. They removed the tumor on April 9th and after ONE night in the neuro intensive care unit, they let me go back to my hotel.

The recovery has been long and hard. I developed diabetes insipidus post-op which resolved on its own but the most difficult part of the recovery has been my bodies "withdrawal" from hydrocotisone. Cushings Disease causes a tearing down of muscles and bones. When there was an over-abundance of cortisol in my body(as a result of the tumor) I could not feel the effects of the muscle wasting and bone deterioration, because of the anti-inflammatory action of cortisol. Upon "weaning," these become painfully evident. The physical pain while weaning from cortisol has been described as worse than weaning from heroin. When cortisol leaves the body, you experience symptoms akin to a really bad flu including sever fatigue, headaches, and vomiting. Some people need supplemental cortisol. My doctors had me go "cold turkey" which now that it is done, I am thankful for.

I just returned from the Mayo clinic Tuesday. The diagnoses, Cushings Disease that has resolved due to the removal of the tumor. My endocrinologist, who said he didn't think I had Cushings said my case disturbed him greatly. Although I showed most physical characteristics of a cushings patient, my blood work was not showing the typical markers. He said he was shocked when my tumor stained positive for ACTH(the hallmark sign of Cushings Disease). My neurologist, who I credit for giving me my life back, said, "Mary, you have humbled the chairman for the division of endocrinology at the Mayo clinic, which is not something that is easily done."

Your prayers have been felt by my family and myself.

It continues to be a journey full of obstacles. I feel like that letter only showed a little bit into my ordeal. Part 2- Tomorrow- The Power of Prayer

Mod Podge

OK- so we have been homebound for a little less than a week. Although I do not like having sick kids, I enjoy STAYING AT HOME. Really- I spend so much time running around during the day- doing things that are not pressing, spending money I shouldn't. Needless to say, I have been productive- I have cleaned and organized. They serviced our heater and whole house humidifier, the sprinklers have been shut down for the winter, they are pumping the septic next week(Do not ask- if you live with septic- you know!) But- this is the kicker- I mod podged an ice cream bucket tonight. I am the type of person that holds on to NOTHING but for some reason I can not seem to throw away ice cream buckets so I made it pretty instead- This is the rough draft. Just to see if it works. After it dries, I will start on the other 10(YEAH we eat a lot of ice cream here!!!) So get out your Mod Podge Oh and I have no idea what I am going to do with this pretty bucket. We will see!!!!!

Slime Flu

Well- we have had quite possibly the craziest few days. On Thursday, I had to pick Ben up from school because he had a temp off 99.6, that night he seemed OK, played with Kevin and Gabe downstairs and went to bed at a regular time. Friday morning, he woke up with 103 temp, which went up but never below 103 even with Motrin. Honestly, I have never seen him in such bad shape. This picture is 24 hours after that time with 100% improvement(I did not feel right about taking his picture at his worst, although now looking back I kind of wish I had to show you what the "Slime flu" looks like) After discussing his case with the doctor, they agreed I needed to bring him in. By the time his 3:50 appointment came around he had gone from bad to worse. It is true what everyone is saying. It really gets bad quickly. He had to be carried into his appointment, his eyes were glassy and bloodshot, his cheeks were red and his temp was now past 104. My heart ached for Ben and as his mother, it was upsetting to see him. The conclusion at the doctor. He tested positive for Influenza A, but they kept calling it H1N1 when I asked why, they said, they have stopped sending in for confirmation and are assuming all cases of Influenza A are H1N1 because 90% are. Ben in his horrid state, looked at the doctor and said" OH NO I HAVE THE SLIME FLU DON'T I?" Well, he is on his second day of Tamiflu and doing much better. He is now complaining of a stomache, which the Tamiflu can cause. I hope the rest of our family escapes it. The doctor did say, unless we are symptomatic, we should go about our daily lives. we chose this weekend to lay low. It was actually nice, we completed a ton of projects, watched the Panthers play on the computer. I actually finished the photo wall in the basement(you have to do something in an unfinished basement to cover the plastic!) Ben had to miss his cub scout camp out, I was unable to go to Chicago with friends, but we are just happy that Ben seems to be on the mend. And- we had a great weekend together! depsite Ben being sick!

Weekend happenings

We were suppose to go to Iowa this weekend for a football game. Kevin needed to stay here to work this weekend- so we hung out all weekend. I really mean it. After bath on Friday, the boys stayed in their PJ's until bath Sunday. They had a very intense wrestling match with Daddy. Apparently to look tough in battle, you (if you are a boy)-remove your shirt. The pillow stuffing is for extra protection against the enemy. And do not forget the sword. This weekend we also accomplished window cleaning. Kevin's job was the entry way, which is very difficult. The boys and I could barely watch him on the ladder. We also removed the paper airplane that has been in our light fixture for months. Our weekend actually turned out to be very productive and fun- but we still missed everyone in IOWA!!!!

Garage Sale Love

I LOVE garage sales!!! I know, I have said it before, if you do not garage sale, you are missing a lot! Friday, I stumbled upon a great sale. The girl was selling off half her wardrobe because she is moving to a 200 square foot apartment in New York City Her loss(quite literally) is my gain. I am only showing my FAVORITE a J Crew pea coat, on line for 298.00 for 15.oo!! LOVE IT! also, OYDN jeans, several Gap and J Crew shirts, J Crew sweaters, Banana Republic wool pants, Decorations for Christmas from Pottery Barn. OH I am HAPPY!!!