I am glad I am sick and not you...

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.

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Now I know...

..why I was told to stress dose with illness. I played hero with bronchitis and only took 5 extra here or there. Tried to fight it off with no antibiotics either. Just call me joe cool .

Felt worse than any day with Cushing's. Ended up going to urgent care last Friday and stress dosing the three days like I should have. It was a rough few days but I am feeling human again and on my normal dose.

Read the entire post at http://www.shouldhaveseenit.com

The pitfalls of modern medicine and lab results...

I see the question all the time, what are the normal reference ranges for XYZ lab tests. The easy answer is it depends on the lab you are using. So, how does a lab determine what is "normal". You probably would have to ask each lab because I am sure there is a method to the madness. A problem, at least maybe for doctors, is that health care consumers are becoming educated on their own health. Michael Kleerekoper, MD, MACE describes on this site that:

What exactly is the problem? If the reference interval for potassium in your institution’s lab is 3.5 mEq/L to 5.4 mEq/L and the patient’s value is 3.4 mEq/L or 5.5 mEq/L, it is highlighted as “abnormal” when the results are posted. Increasingly and appropriately the patient gets a copy of the lab report sent to their home and they can’t miss these abnormal labs.

Read the entire article at Thankful For the Journey

A bitter pill...

Low Vitamin D levels in Type 1 Diabetes

Many of us who face Cushing's know what happens to our vitamin D levels. They drop and we experience the problems caused by the low levels. Many of us fight a lowered immune system and low calcium because of it. It really hampers us and in ways we probably don't even realize. Dr Friedman from Good Hormone Health writes:

Vitamin D appears to have many effects besides being related to calcium and bone health. Some patients with low vitamin D levels have fatigue and bone pain, which is easily reversible with proper replacement of vitamin D. Vitamin D may protect against heart disease and some types of cancer. Vitamin D may also have some role in regulating the immune system and also reducing blood sugar levels in patients with diabetes. Proper vitamin D levels are needed to prevent osteoporosis. In conclusion, proper vitamin D levels are essential for one’s health, especially if you have thyroid problems. Unless a patient is exposed to sunlight or foods containing vitamin D, screening for Vitamin D deficiency is recommended for all thyroid patients.

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New drug that could bolster the immune system

This new drug caught my attention. I have a disease that suppresses the immune system. The longer it goes on, the worse the immune system can become. Naturally I am quite interested in anything that could possibly help. This drug is a long way off from the average patient. Just knowing that something like this is being worked on is a good feeling. Hopefully it works well and reaches those who need it quickly and safely.

SCOTTSDALE, Ariz. - Dec. 19, 2008 - The Translational Genomics Research Institute (TGen), Scottsdale Healthcare and Mayo Clinic are testing a new drug that could help cancer patients by stimulating the immune system.

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Why Not?

When I start asking “why me”, I turn to…

Isaiah 6:8

Then I heard the voice of the Lord saying,
“Whom shall I send? And who will go for us?”
And I said, “Here am I. Send me!”

..and say “why not me”.

Like the saying goes, “It is choice, not chance, that determines your destiny.” We control how we react to bad situations. Life isn’t about fair or unfair. Life is about the ability to choose. Some things, like cancer, cushing’s and life threatening illnesses give us little or no choice in the matter. Most of us do not raise our hand and say pick me. What we do have is the ability to choose on how we react to it and how we let it define us or rather, how we redefine ourselves after facing something tragic. I still remember leaving MD Anderson hospital after recovery. The air was sweeter. The sun was brighter. Life seemed fresh and anew.

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The Journey Begins...

My name is Steve Owens. My online friends call me sowens. I am a husband, father, son and brother. I have many friends both near and far. I am a veteran. I have a good life and only a few regrets. I am also a Cushing's survivor. Cushing's is a disease that strikes about 200 people a year in the US. In reality, it probably strikes many more who never know what it making them sick. I am fighting recurrent Cushing's, in my case a brain tumor, which has come back stronger than before.

It is my hope to write about this part of the journey to show how the process works. Since my surgery failed at MD Anderson and I have no cure, I have a few options left to try and get better. One of them is a bilateral adrenalectomy or BLA for short. My pathology shows I have corticotroph hyperplasia, which we are told is a rare form of Cushing’s. Another poke in the head probably won’t work and the BLA seems the best option.

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Here am I

Isaiah 6:8
Then I heard the voice of the Lord saying,"Whom shall I send? And who will go for us?"And I said, "Here am I. Send me!"

We are the orphans. We are the zebra's in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing's. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst.

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