Good News Everyone!

Well, last week I saw my new (hopefully) doctor and did a follow up at Swedish. The new doctor is a natureopath who used herbs along with western medicine to treat illness. She wants me to try an herb from India that regulates adrenal function and cortisol. That sounded good until I went to Swedish.

At Swedish, they acted as if they actually believed me. They sent me home with a jug to pee in and told me that they wanted to try me on one of two medicines. Corcept and Signifor.

Here is the catch: I can get Signifor, a $25,000/yr drug, for free if I can prove I am having cushing's symptoms. If I get on Corcept, my health insurance is free. And from what I understand, signifor works better and is more long term. So, I dont know what will happen. NORD wants to cancel my insurance because they didn't tell me I had to be on any medication for the program I am enrolled in. So I will probably loose my access to medical care until I can get approved for charity care, but they don't cover lab work . Which is a big deal seeing as the original testing came to just over $25,000 (everything cushings related must be a multiple of 5) and the surgery was around $50k.

This week also saw two other good things. Well, sort of. A very good couple of friends who were domestic partners ended this part of their relationship and one moved in with us to get back on their feet. I don't transition well, but its been easier with them helping us with bills and house work. Its going to be a good thing. We also finally saw a raise in our food stamps. Substantial raise. I wont get into how much, but we don't have to worry about food for a while.

I cant get hold of the place I was applying for close to home. They wont even return my calls. So Im stuck driving an hour each day and its killing me. But all in all, it was a stressful but good week.

Thanks again for reading!

The Weary, and cautiously optimistic, Zebra. 

Another Rare Day

As tired as I am now, I know it is the price I have to pay for such a fun day yesterday. Dr. Ludlum says I have a variable tumor, that turns on and off when it wants to. My tumor was ON yesterday! We had planned on going to a good friend's graduation dinner but we had not seen a movie in a while. So we decided on a matinee viewing of Robin Hood. Very good, I might add.
But as we headed to the dinner (more like a late lunch), my dad called and wanted my advice on a laptop. I was feeling good so we decided to meet after lunch. The significance of this is that he has never owned a computer before. So we had a great time at the graduation lunch, I ended up soaking myself with crawfish before it was over and the spicy seasoning made my lips (and inner nose) tingle. I went through a pitcher of tea keeping the hot spice at bay but the pain was worth it!

We took my dad to the Apple store, since they are DA BOMB! He will be using this mac for years! He even went to a class this morning about his mac! He also got an air card for his mac to access mobile internet! So proud of him.
But as fun of a day it was, I am paying for it today and in more than one way. I felt like trash as soon as we got home. My dad walks so fast. He wore me out! I felt even worse today, but it was worth it! I just get so SAPPED and drained anymore. But when I have the energy, I try to use it.
I also upset a really good friend yesterday. She shared something that was private that I thought was not as private as it was. I was having such a good time, I didn't see that. She is hurt but hopefully will stay a friend and one day I hope to earn her trust back.
Below are some goofy pics Mrs. Zebra took of me while at Camp Cushie. Just thought I would add them since over all it was a good day yesterday.

The Weary Zebra

See and download the full gallery on posterous

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The Zebra Wife has something to say!

Here is the misses and her comment on Camp Cushie. Enjoy!

The Weary Zebra

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Cushie Camp Day 5

Here is the conclusion of my trip to Dr. Ludlum's Camp Cushie. I do have one more video from that week to post in relation to Cushing's, but I will have to do that tonight/tomorrow. For now, here is Day 5. S

The Weary Zebra

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Camp Cushie Day Three and Four

Here are the video updates for Day three and four. Hopefully now, you know how rough this week is. I dont even have a Day Two video anymore. Im still looking for it...I lost a day of updates...

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Camp Cushie: Day Two

For some reason, I cant find the video I did for Day Two. I will look for it again, but I remember doing it... Does anyone remember watching it...? The travel lag and the Cushing's is not playing with my head well... So instead, here are some pics of our "accommodations". Dont except much!

http://gallery.me.com/iveybrandon#100273

The Weary Zebra

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Camp Cushie: Day One

Day 1: Rough Shot over the Bow
I am still working on the VLOG, and it will have better info than I do now. Day one was rough. Whatever you do, if you come, go shopping in a TAXI! Dont take the bus for groceries! Lugging $70 WORTH OF $40 grocery all over downtown was not fun. Especially with a picc line in your arm. Im doing blood work every 4 hrs, and I met with Dr. L yesterday. He is SOOOO cool! His staff is great and the staff at Cherry Hill is the best! They are so friendly and funny. Im sleepy now, but I did a 15min vlog at midnight that is much better and has more info.

Posted via email from The weary Zebra: Zebra Snippets

Swedish Medical Center Prolouge

Well, today was amazing, though we are exhausted. We had two hours of sleep before our flight left this morning for Seattle, WA to see Dr. Ludlum at the Swedish Hospital. It was my first commercial flight and the first time I had ever been further west than Denver. The view was amazing and I will have a really cool vid about the flight later.
We took a nap after we checked in at the Inn at the hospital. I will post a pic of the room later, but if you are coming, do not expect much. It is a converted patient floor. We spent the afternoon at Seattle Center. We hope to do more over the course of the week but the schedule is very tough. One day this week, I cant eat most of the day. I will keep you all informed. Tip #1: If you decide to come, try to be back before 9pm. If you get back later than that, you will be locked out and will have to go in the ER entrance. Night folks! Oh, if you want pics from today, copy and pate this into your browser and enjoy!
http://gallery.me.com/iveybrandon/100242
The Weary Zebra.

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Zebra Snippet 10: Sleep

Sleep. The night time rest that mocks me. That mocks most Cushing's sufferers. For the first time in so many months I can not count, I got 8 straight hours of sleep. Heck, This is the first time in so many months that I got more than 2 straight hours. And I feel like I didnt sleep at all.
From my experience and what others tell me, Cushing's Patients have a love/hate relationship with it: We love it, it hates us. Some people, like myself, have two options when it comes to sleep usually. We can try to sleep and end up tossing and truing, dozing in and out, heart beating out of our chests, not resting. Or we can stay up, wait the cortisol out and hopefully get a few hours of light sleep before we have to go back to work again. As I write this, I can barely keep my eyes open. I feel like a train hit me and wondered what happened in the 8hrs I spend unconscious. It feels like I spent the entire night drinking vodka and tequila. And no, I didn't. Just saying this must be how it feels to do so.
5 more days until I step foot in the Land Of Port, to see Dr. Ludlum.

Posted via email from The weary Zebra: Zebra Snippets

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

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

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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....