Next Stop: Camp Cushie!

Today, I kicked my PCP to the curb! I haven't told him yet, but the last few days have been THE HARDEST dealing with him. He didn't believe in Cushing's until Friday, then all of a sudden knows everything about it. He told me he would not refer me to Dr. Ludlum for a workup unless I went and got a workup from one of HIS endocrinologists. Knowing him, he would have told them to ignore me and send me back. He refused on all accounts. I mean, obviously, Im just a fat and lazy sack of crap!

But I still need a referral. So Dr. Ludlum sugested I find another doctor and try to just get referall. I decided to go to a doc-in a-box (PrimaCare= ER walk in clinic) and not only were they able to do the referal (CareNow wouldnt) but the doctor I saw is so intrested in my condition, she wants me to update her on it when I get back. If she ever gets her own practice, I will pay her a visit!

We are getting flights now for April 18th and the 23rd.  This is finally hapining.... It hasnt fully sunk in yet....

Next stop, Camp Cushie....

The Weary Zebra

Zebra Snippet 5: The Walk

Many people take for granted the ability to do every day activities. Going out on the town is something most people just "do". People with Cushing's, however, do not have this luxury. We have to plan for every part of our day. The planning alone can sap your energy with what this disease does to ones mind.
Take a trip to the mall, for instance. Just park and go in, right? Not for us. First you have to figure out which way is the right direction to go, then remember it. Then, comes the hard part: finding a close enough place that you won't be TOO tired or TOO out of breath to do your errands. As usual, I dropped the misses off as close as possiable. But after having to park way out, I really wish I had a handycap plaquard. It's harder for the misses to do the walk, but after seeing this sight, I really can't wait for tha diagnosis. This summer, I can forget about walking this in the 110° heat...

Posted via email from The weary Zebra: Zebra Snippets

Green Light for Tests, But Need Referal

"Dear, Dr. XXXX
I have been tracking my symptoms for a few months and based on my symptoms and the research I have done and people I have talked to, I elected to do testing for Cushing's disease. I did a 24hr UFC and my results are attached. It is 3X the normal high. Because of this, I requested a second opinion froma specialist in Seattle. Baised on his recomendation, I am asking for a referal to see him. They need it for me to cross state lines. They have requested the following faxed to them:
" Refer to Dr. William Ludlam for extensive workup and treatment for potential complex Cushing's Syndrome and pituitary disease. "
Because of my test result, we got insurance on me just in case I am positive. If you have any questions, you can call me, or Dr. Ludlum's Coordinator

Thanks,"

I was given the go a head for testing from Swedish and my *spit*insurance company after a $500 deductible. But now I need to convince my primary doctor or the doctor I did the test with for a referral . Both are very egotistical, but since my doc wont loose any money on the deal, I went with him first. I got a conformation that he got it and will get back with me. Whatever prayers or good vibes you can spare, please send them my way!

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

The Porcelain God

This is what I saw most of yesterday. Well, this isn't MY toilet, but you get the picture. It all started Sunday night. I think I overworked myself when I got my "high" by doing some major cleaning. Well, trying to anyway. Moving furniture, boxes, my wife yelling at me to stop. I should have listened. I got light headed and laid down. About 10 min later, I couldn't move. It hurt to breathe. I was nauseous, dizzy, and confused. I figured I had just done too much so I went to sleep.
By 6am yesterday, I was puking my guts up. I had to about three times before I left out the door for work. A little cola and I was fine for a few hours, then visited the porcelain god four more times in 4 hrs. I couldn't concentrate on work so I left and spent the entire day in bed, trying to either sleep or find out if this was a bug, or a sign I have cyclical cushing's.
I read later that evening if I put 1/4 teaspoon of 1% hydrocortisone cream (anti-itch) that if I was having Adrenal Insufficiency symptoms, it might help pull me out. SO after throwing all day, thats exactly what I did. And about 30 min later, I had an appetite (small one, but it was there), and I didn't feel as achey or dizzy. I don't believe in coincidences, but Im still not 100% this morning. I guess either way, its Cushie. Either its cyclical, or just bad immune system. Oh well. Hopefully, Dr. Ludlam's office will get a hold of the insurance company and I can be on my way to a cure.

The Weary Zebra
 

Posted via email from The weary Zebra: Zebra Snippets

Zebra Snippet #3 or 4?

Brain Fog is bad today. SO I don't remember which one this is. But I wanted to do a quick update. I feel like trash today. I have the usual bad feeling, plus the ache and painful joints and mussels, but my mood is horrible too. Im so depressed. Im worried about if work will let me take off if I am cleared for surgery, Im anxious to hear back from Dr. Ludlam if i was authorized by my *cough*insurance*couch* to get tested. It is very tight, but we were able to get ME insurance. The misses still SOL right now.
So I just want to curl up in a ball and cry myself to sleep. And as tired as I am, it wouldn't take long.
Still looking forward to my first commercial flight...
The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

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...

wow....

Emotional Rollercoster

 

Cushing's can be a ride for sure. But not nearly as cool as a rollercoaster. Maybe, like one you are strapped to and cant get off. 

Imagine, one moment you are depressed and tired. You ache and have really bad anxioty. Then, all of a sudden, you have all this energy and get ticked at the smallest thing!  And this happenes daily. Day in, day out. Oh, and you dont sleep. Maybe 3 hrs a night. 

But whats worse: When you finaly get your test results back, and they look like they point tword a diagnosis... and your doctor craps all over them telling you a bunch of BS about them. Saying that your faking the tests out and cheating! It makes me so mad! And depressed. Like I messed up or something. IDK, I just look to my friends for support... family still doesnt get it yet.

The Weary Zebra, still riding the loops...