Communication Disconnect

Today's blog comes to us from a good friend in the Washington area. Hopefully we will see her when we go to Seattle in 2 weeks. 

With Cushing's, there can be a huge disconnect with how we process information both input and output, especially while talking. That is why I usually like to email or instant message, or even text instead of talking on the phone or talking face to face. It has always been like this as long as I can remember, but with the tech revolution it has been easier for me to communicate my thoughts and feelings to people with tech ability. Below is what my good friend said to me, and I agree whole heartedly.

"Whenever I have to wait somewhere I organize (everything) it and write notes to myself so that when I get on the phone with these people I don't sound like an idiot. They get so irritated when you overstate what you need. I sometimes will tell them in advance when they answer. "listen..before we start I want you to know I have a brain tumor. This kind of tumor affects my thought process in a way that I can't articulate myself with a short explanation and a long explanation may even miss the point so please bear with me. It also affects me in a way that I am exhausted most of the time and I'm easily stress because I lack the proper stress and energy hormones so some of these issues weren't addressed in a timely manner. Is it possible for us to do this through IM, email, fax or snail mail so that I can get the assistance I need from another person or have time to think out your response and my answer?" I USUALLY get a decent response.

I think that when they mention that people with Cushings become reclusive that this communication problem is part of the reason. What I've noticed is that people with Cushings seem to have above average intelligence and most of us do more in a day than the average Joe does in a week - when we're sick- when we're not sick we can fit a month ... See Moreinto a week. But when we're sick something misfires in our processing. Whatever step happens between the information going out or coming in gets garbled in transition. We CAN understand and we KNOW what we want to say or do but it theres a pause for us. It makes us seem like we don't know what they mean. Most of the people around me get frustrated because they are accustomed to me being sharp. They're already talking about something else by the time I get my original response out. Some even get mad because they think I'm not paying attn. Some get frustrated because I subconsciously just keep talking while I'm waiting for the real answer to come out in order to keep them from changing the subject or having a long awkward pause or just hoping that whatever comes out will include the answer. so...I just dont start or get involved in intelligent conversations because I'm so slow."

The Weary Zebra and Friends

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Pick Your Poison

A good friend that reads this blog was talking to be about how Cushing's effects our sleeping patterns. And she said that "it feels like I am getting shots of Nyquill and expresso at the most inappropriate times," I thought that was one of the most brilliant explanations I have ever heard! The only thing was that I would have said energy drink instead of coffee because I hate coffee and dont know what it really does to the body, but tomato, tomaato.
Let me explain a typical Cushie day for me, in the light of energy levels. I have to get up earlier than most people would, because it takes me longer to get up and dressed. Truth be told, it would be MUCH earlier than that if I didnt have help. It is embarrassing to say, but Mrs. Zebra helps me every morning by picking out my clothes from the closet and drawers, putting together my shorts with belt and such, and helping me up so I can put them on. She also feeds the bunny and cat and fixes breakfast all because I feel like I just took a shot of Nyquil. At least a shot. And I usually feel like this all day, with aches and pains, and the crushing tiredness like I want to fall asleep. Even while driving. In fact, imagine driving a bus full of kids feeling like this. I did, for 4 years and a full time student. HELL.

Sometimes I will get my expresso feeling around 3-4pm (1500-1600), but usually happens around 8pm (2000). I feel so much better! I have all this energy! My aches and pains start to fade away! So time to do something constructive, right? Not a chance. I cant focus. I had too much "coffee". Now all I can do is shake and rock and try to tire myself out because I need to go to sleep soon! Then my chest starts to hurt, and every vein in my body feels like its going to burst. And my head starts to hurt. Then, as it gets closer to midnight, I get a dose of BOTH Nyquill and expresso. So now I feel so tired but CAN'T sleep! And I feel like Im going to explode!
So around 2am, sometimes as late as 4am, I finally fall asleep. Sometimes earlier if the sleeping pill works. Then I have to get up about 6am. Sometimes earlier. And I toss and turn all night, sweating and I wake up sore and tired again.
This morning was nice because that happened last night, but today is my first day off in months! I dont have any cash to shop with, no where to go and nothing to do. I got to sleep in a bit, and am about to take a nap.
I think Im dressed for the occasion!

The Weary Zebra

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SHUT UP AND LISTEN!

Ok, before I start this rant, I want to thank the DFW Smart Car Club for their generosity. My friends in the club showed how much they appreciate what I do for the club and gave a substantial donation to help Mrs. Zebra and I up to Seattle. Thank you all!

But something else has really started to bother me and I had only really heard of this. I had never experienced it, at least in my face before. I had a co-worker ask me, and later my boss did too, why I need so much time off after surgery. "Its not like its cancer or anything." WTH? (I mean I know they just dont understand, and they are really awesome people but I need to blow off some steam so just bear with me). Then my aunt tells me that Cushing's doesn't have the "torture and death" that cancer has. EXCUSE ME? Oh, so Im not SICK ENOUGH for anyone, am I?
Look, I don't want to down play down cancer. It can be a very horrible condition. But I know more people that have had cancer and have told me "you know, they caught it early and treated it, and Im fine. Kemo was bad, but now its like it never happened." I have YET to meet or talk to ANYONE with Cushing's that said ANYTHING like that! First is the fact that there is a SIGNIFICANT number of people who have Cushing's and don't know it. MY MOTHER WAS ONE, at least as far as I can tell. We will never know for sure. I say WAS because one of the symptoms of untreated Cushing's is an early heart attack and early death! Aside from that, Cushing's is hard enough to get diagnosed. Some people wait years, or die waiting because the treatment for their weight gain, diabetes, high blood pressure, constant agonizing pain all over, insomnia, depression, constant diarrhea, mood swings, hair loss, hirsutism, blindness, nasal issues, ADD/HD, infections, thin skin, constant feeling of heat or cold, body wide acne, cysts, bone and joint problems, thats all I can think of off the top of my head. THATS NOT BAD ENOUGH FOR YOU PEOPLE? THATS NOT SICK ENOUGH? AND Cushing's can LEAD to cancer!
THEN, there is the treatments! Its not as simple as cancer in many cases. Best case scenario, you get your pituitary tumor taken out and try to ween yourself off the overdose of cortisol your body is used to. I've had tastes of this time and I want to die. No, not "Im emo, and I want to die", no I mean "Please kill me so the pain goes away." But thats not sick enough.
So, that surgery fails. You can go back in, or they can try radiation. I have a good friend that tried that. So much, her pituitary is shot and has the texture of an eraser because of it. In that case, you get the lovely decision of living the way you are, or trading your disease for Addison's by having your adrenals taken out! Ok, so you choose that and take meds the rest of your life... Except that THIS procedure might make you grow tumors all over your brain that they cannot operate on. Thats called Nelson's disease. And this is SOOOO much better than Cancer! SURE!

Look, just because YOU don't understand what I am going through, doesn't give you the RIGHT to tell ME Im not sick enough. You have NOT FREAKING IDEA WHAT I HAVE BEEN GOING THROUGH FOR 18 YEARS! Either ask me questions and talk to people who have this for STFU!!!!

"My invisible disease is MORE REAL than YOUR medical degree!" SO STEP OFF!!!

If you Cushies have anything to add, comment so the ignorant people who read this can get a better idea of what we go through.

The Weary AND ANGRY Zebra

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Cushing's Study Today

Well, I go to the Cushing's study here in Dallas tonight. I was asked to write about when my symptoms first started, how Cushing' s has affected my life, and explain two instances where Cushing's has made life difficult. These questions were to get me thinking about this for the interview tonight. And the answers have to match. Thats what they said in the instructions. If they didn't match, I wouldn't get paid. The obviously have never met a Cushie before.
Anyway, I was also told to make a collage to help explain to someone what Cushing's means to me. What it is like. I couldn't fit it all on the 17X11" paper I used, but most of its on there. So I thought I would share it with you all. Maybe you all will have fun guessing what they all mean?

The Weary Zebra

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Severe Pain?

Good Lord, did that hurt! I was eating lunch and slamed my left knew into the solid wood table leg! The legs are very close together here so it wasn't hard to do! But what happened right after had not happened in a long wile, at least not in response to pain. I started to pass out! The pain made me cry, then I got dizzy. I started to black out, and all the sound got muffeled! Just as I started to fall asleep, something kicked in and I woke right up! Not only did the pain subcide, but my aches from withdraw were dulled! After about 30 min, my knew hurts again and I ache. But good night! I still don't know what happened...

The Weary Zebra

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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

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Lil' Buddy

Well, I felt pretty crummy last week, and especially Saturday. I was either super high and miserable or low and miserable. And it seemed our cat, George DeKat, knew it. He usually does. We have a routine every day. I come home first usually and when I open the door, he is waiting for me literally at the door. He follows me around while I get ready to decompress, and we sit on the couch and I do nothing but pet him and watch TV. If I try to check email, he gets mad at me.
The day I took this picture, Friday, I got off early and went to lay down before going out with friends. Knowing how exhausting it is, I knew I needed to rest. He didn't like this, and usually will ignore me the rest of the evening because of this. Not this time. This time he got right up and laid on me. He knew I needed to have some company. He did the same thing when we got home that night. He knew I needed to pet him, to relax.
Our daily routine may seem like its just for him, but really it is therapeutic for the both of us.
The Weary Zebra

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