Life's Unfair!

...but we all know that already.  Sometimes I feel like that line from Bruce Almighty, "God is a mean kid with a magnifying glass."  Ok, so I don't really feel that way.  But it sure does seem like some people have a disproportionate amount of bad things that happen to them, while other people seem to skate by in life while avoiding all of the potholes.  I try very hard to focus on the blessings in my life, and not the deficits; to be thankful for what I have and not covet things I don't.  But I am so far from actually achieving this ideal in my daily life, it is probably laughable to God.  I suffer jealously often, I am often depressed by thoughts of what I can't do, and I long for the things I can't have.

This has been magnified one hundred times lately as we have begun talking about adopting a child.  I came to peace with the fact that I would not have a biological child a long time ago.  But God has blessed me by bringing many children into my life, through friends, work, church, and now the beautiful girl I call my daughter who belongs to my fiancee.  However, I have always had a longing for a baby,  a desire for a large family, and a heart for children with disabilities or who were just tossed aside for whatever reason.  I would love to adopt.  I think I would make a good mom.  But as we have begun this journey I have come to realize that I might as well wish for a million dollars to appear on my dinner table tomorrow morning, that is about the chance I have of becoming a mother through adoption.

Many agencies have a marriage requirement.  They require couples to be married a certain number of years, and it one spouse has had a divorce that number is usually increased.  Well, Brian and I have been putting off our wedding for a year and a half because of health and financial reasons.  I guess in 5 years we will be good enough to give an orphan a loving and permanent home.  Don't get me wrong, I understand the need for rules like this.  These children have been through such upheaval and trauma in their short lives already, you don't want them to have to go through the distress of divorce.  But longevity is not a great indicator of marital bliss.

Well, regardless of if we had been married 10 years or not most agencies will not even consider you if you have had a major illness, currently have a chronic illness, have taken anti-depressants or been to psychological services in the past 2 years, or have ever had cancer.  So strike one, two, and three for me.  It was like a knife to my heart when I realized that the disease I have been fighting for the last 10 years, fighting to live, to have a family; may be what costs me from adding to our family in any way.

I see so much need out there.  So many kids in orphanages, group homes, in abusive situations, people who just don't "want" their children.  I believe I  could offer a loving home, I would love to raise a child of my own, however they made it into my home, but life is just so unfair sometimes.

Procrastination and Pain

I am a terrible procrastinator. Anyone who knows me would agree with this. I am a Pisces, I have huge ideas, and a room full of projects that were started and never finished. I am terrible about sitting down and writing, but I really want to make an effort with this blog. Even if only one or two people read my posts and are more informed about Cushing's then I consider that a success.

 I have felt for quite sometime that I have had a recurrence of Cushing's but I was told by my doctor that it was just taking my body longer than normal to recover from my Pituitary surgery. I even read a chart note that said "patient is unhappy with her life and is just looking for something to explain her problems." That really hurt, as I actually respected this doctor. So after that experience I resumed working with the specialist that diagnosed me in California.

 I have been doing scores of 24 hour urine collections, salivas, and midnight blood draws. My fridge has been full of orange jugs of pee and my freezer stuffed with vials of spit. My family loves it! It has finally paid off. Two weeks ago I had a phone appointment with my doctor and after evaluating my labwork he agrees that I am having a recurrence. I had hoped he would say let's move on to a BLA (bi-lateral adrenalectomy), where they remove your adrenal glands and you essentially trade Cushing's for Addison's. But unfortunately he felt I am "early" in a recurrence and he wants to try a medical approach first.

 I have been wary of trying a medical approach (it doesn't always go so well for people with Cyclical Cushing's). One of the local doctors in Arizona wanted to try a medical approach before my pit surgery but I would rather take the surgical option which has a chance of cure or remission than just suppressing the effects of cortisol with medication. But now I am at a place in my journey where I don't really have a choice. I take the medication and hope for the best or watch and wait as the Cushing's symptoms all return and get worse. Luckily I belong to a wonderful support group of amazing people who gave me lots of great suggestions for starting this medication, Ketokonazole. And I am also surrounded by a wonderful faith community who is lifting me up in prayer. So far (3 days into it) I have only experienced some mild nausea and fatigue, and a slight increase in my chronic pain. I am expecting it to get worse as this week I only started out at half the prescribed dose, so ask me next week how I am doing.

 So what is the plan? I am going to take the Keto, keep putting one foot in front of the other, and hope that either my neurosurgeon sees a surgical target (new tumor growth) on my most recent MRI, or that my Endo decides my case finally meets the criteria for a BLA. I just pray for the faith, strength, and trust in God to just walk my path with an attitude of gratitude each and every day.

Cushing's is no joke!

Today is April Fool's and the first day of my 30 day blog challenge. I am going to write a post everyday for the next 30 days talking about my life with Cushing's. And while I love a good joke, and especially a good prank (as long as I am not on the receiving end), Cushing's is no laughing matter.

Cushing's Syndrome is caused by an excess of cortisol and can be caused by tumors on the adrenal gland, tumors on the pituitary gland (which is specified as Cushing's Disease), ectopic tumors, or exogenous use of glucocorticoids.

Symptoms of Cushing's Syndrome include:
-Rapid weight gain (especially around the abdomen and in the face)
-Distributions of fat specifically around the collarbone and at the back of the neck (supraclavicular fat pads and buffalo hump)
-Purple or red striae (stretch marks)
-Thinning of the skin
-Easy bruising
-Acne
-Proximal muscle weakness
-Excessive sweating
-Hair loss
-Hirsutism (growth of facial hair)
-Insomnia
-Reduced libido
-Amenorrhoea (cessation of menstrual periods)
-Psychological disturbances (anxiety, paranoia, depression, and psychosis)

Cushing's can also cause:
-Hypertension
-Hypercalcemia
-Insulin resistance
-Diabetes mellitus
-Heart disease

And without treatment Cushing's Syndrome can lead to DEATH!

It took 10 years, but I was lucky enough to finally get treatment. I am still sick and still fighting this battle but at least I have allies now. Education about this disease is so important, so if I reach even just one person in the next 30 days then this adventure in blogging will be worth it. Cushing's Syndrome: Get Educated, Save a Life!!

The last two years...

I have decided to accept a challenge to blog for 30 days straight about health, illness and the impact these issues have had on my life personally. So when I logged into my blog and realized it had been almost two years since I had written anything I was pretty sure that I was not going to make it a whole 30 days. But I am determined to give it a shot.

I have spent the last two years fighting Cushing's Disease. On April 7th, 2010 I had Pituitary surgery to remove a tumor causing Cushing's disease. I had high hopes that this would be a one shot cure for me, but like so many other things in my life this hasn't worked out quite like I planned. Two years later I am testing for Cushing's again, and I am just as bad off as before. Except, because of my illness I met the love of my life and his wonderful daughter. And when I thought I would never have things like marriage and children in my life I am now a mother to a beautiful young lady and I am planning a wedding.

I can't promise that this will be the most interesting or witty blog; or that I will have amazing life changing insights, but I encourage you to take this journey with me for 30 days in April as I attempt to bring awareness to Cushing's Disease in particular and illness in young adults in general.

For more information on Cushing's Disease visit: http://www.cushings-help.com/
For more information on cancer in young adults visit: http://www.masskickers.org/