Confirmation! And doubt?

Well, I talked to Dr. Ludlam on Friday and baised on my UFC, he says I have Cushing's YEA!!! He still wants me to come in for the one week workup that is nick named "Camp Cushie" but he says that by failing the Urine Free Cortisol test, it should be realitivly easy to fail one or two more tests.

At Camp Cushie, he has people come in for 5 days and test every day. Not just one test a sdy, but blood, urine, saliva, etc every 4 hours for the first 2 days. The next 2 days I take a pill every 6 hrs to supress the cortisol (I think) and the last day there is some testing. For me, he also wants to do a IPSS test where they stick a tube from a vein on my thigh into my brain to determine what side of the pitutary gland the tumor is on. Its a two hour test total. I am SOOOO excited. The down side? The cost.

The tests at The Sweedish Medical Institute will cost over $30,000! So, because of this, we got ME insurance. The misses is still uninsured. It will be very tight here. for a long time now. And we are PRAYING they dont secrew me out of this before next year with pre-existing BS. But Dr. Ludlam was so impressed with my results that he was talking about me staying for 2 weeks to do the surgery the next week! I will have to see what happens, but things are looking up! It IS all in my head!

So we have started the process of telling friends and family. But, after the discussion with my mother in law, I feel like I must talk about this:

Faking it?


Well, it seems that my mother-in-law thinks I am sick so that we ask for money. In her mind, I am not sick and I am really just faking it or that it isnt as bad as we make it out to be, so that they will give us money! I haven't been this insulted since the LAST time she accused me of stupid crap! Like being in a cult and a devil worshiper, or EVIL! (yes, she said I was evil for taking her baby away from her. Issues? Just a little). Anyway, even to people in their right mind, this is a hard disease to explain. They are seemingly unrelated symptoms (chest pain, fat face, fatigue, urinating more, bruising, thin skin, etc) and its RARE so you cant have it. Its too rare for ANYONE to have it, right? It is said that 20% of the population has a brain tumor. That isnt rare, that is UNDER DIAGNOSED! And tonight's stress is brought to us by a woman who SHOWS many of the symptoms and has just undergone weight loss surgery to correct the symptoms! On top of it being hard to explain, my mother-in-law has trouble FOCUSING (symptom) on anything not inside her head or in front of her face! So a phone convo that is more complicated than, "It is snowing" is more than my wife can handle. I have given up talking to the woman about anything important, but like I said, its hard enough with normies. 

My dad really tried to understand and so have the friends I have told. Im scared to tell those at work just yet, but it will have to happen sooner or later. I really should just adopt the attituede of "either try to understand or STFU!" Well, time for der Shower and to ride this cortisol high out... still hard to beleve that a) Im 25 years old and need a cane and b) this might all be over soon... wow...



Robin said...

Brandon, sometimes you just have to do what you have to do. Is someone going with you when you go to test? Dr. L is really good about telling family how it is.

I love your blog! It's a great documentary of all the things one faces when trying to get help/diagnosis/treatment. Keep it up!!


The Weary Zebra said...

Yea, Kaylie is comin with me. That's what the argument between her and her mother was about: Her mother doesn't think Kaylie needs to go. But whe asked if SHE would go if her husband had to, well of course! If anyone on THEIR side of the family was in need, the of course! And if Kaylue needed me there and I didn't go, then I would be a monster! I have my own therory as to why she does this constantly to me, but I won't post it here. Just rest assured I am evil incarnate and the devil spawned be on Black Sabath at 12 midnight. Yea, sure! Congratation prayed for me today. God's in the pilot's seat, I'm just along for the ride!

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