Some "Cushie-like" humor:

Yet another stint with emergency personnel :(

It wasn't adrenal insufficiency this time that brought paramedics to my door. My legs finally gave out and I hit my head equaling unconscious Vanessa. The worst part about this experience is that the EMTs did not believe a word I said. They thought I was drunk because I had a couple empty beer bottles in my room. And they had no idea what Cushing's was! Maybe if I had said I was having an adrenal crisis they would've understood? I got so fed up I told them to call my mom so she could reiterate it all. They asked me why I had so many pills. Once again, because I have a REAL medical condition. I said, "read the labels. They're prescribed to me. Or they're vitamins".  I'm not a pill popper. I kept telling them they could check my vital signs and blood alcohol content. Everything was perfectly normal when they finally did. I don't think they took anything to heart until they talked to my mom. There I was in pain, not being able to stand and I had to defend myself like a criminal. I couldn't just say I have a condition and get some understanding. They had never heard of Cushing's. It hurts to walk anywhere today, although I guess I have my proof that my muscles are worse than they would seem. I also kept telling them if I didn't have a concussion, I was fine and needed to get to bed. Cause I still went to class this morning! I'm lucky I don't have one, but if I had thank god my roommates found me right away. I could've died... how many times do I have to get this bad before someone listens! I mean, it's really scary when the medics don't even get it. I read a horrible article once about someone who had died from adrenal crisis because paramedics didn't know the kid needed Cortisol. I'm glad I wasn't having a crisis, because maybe the same would've happened to me. How many times do I have to worry my family and friends? My poor mother. At least she talked some sense into the "doctors". She also agrees that I need to go to a different specialist because my digestion is not any better. I keep trying not to think about how close I came to being seriously injured. One more thing: my sister with the prediabetes had an unusual spike in her white blood count and our family doctor has no idea why. It's about at the same levels mine used to constantly be at. She's sleeping a lot WITHOUT he medications. She has more stretch marks. What on earth is happening to her? Does she have Cyclic Cushing's? Is that why we haven't seen high Cortisol results again? It was pretty damn high once. I hear Cushies talk about the "golden standard" test not being so golden. Because the golden standard of the 24-hour urine test has flopped two times already with her. Anyway, I was scared and not being taken seriously. I told the damn cop to look it up when he got home. I am beside myself here.

1-2-3. One carefully placed baby step at a time...

I'm developing a fear of stairs. I don't mean when I see stairs I immediately panic. I just find it harder and harder to walk down them without feeling like I'm about to lose my footing and plummet to the bottom. In class today we had a presentation that called for "trust falls". My face went stark. I considered sitting out. Nobody would've given me trouble if I just admitted my legs were weak. I instead excused myself to go get my jacket I left in the computer lab earlier. I generally don't like to refrain from anything even if it's challenging. That said, anything more than simple balancing activities is a bit disturbing for me right now. My muscles are working overtime to strengthen. I feel it. Going up stairs sucks, too, but it seems like there's less gravity to worry about. It hurts, but it's plenty endurable. It's more a fear that they're going to give out, because sometimes my legs shake from working too hard. This is another part of Cushing's I've gotten some heat over. Someone else posted things you shouldn't say to people with chronic illnesses and one was "you can't be in that much pain". I took that one to heart. Since I'm not on crutches, not completely devoid of the ability to walk, I don't qualify as inhibited. It's not even that I expect help. It's the principle of the matter; that many don't acknowledge or believe it's what it is. People barely comprehend what a disease like this does to your body. There's a lot of things in the world people don't understand and it breeds negativity when it's not addressed. I've also heard people complain that doctors wait for the symptoms to get worse as patients watch their bodies deteriorate fully knowing what the problem is and wanting to fix it before it does more damage. Really? House M.D. would be all over that shit. I've often said it's no fun to feel like you're on an episode of House. Well, at least that guy would listen to me more readily if I presented with anything slightly odd. The mid-ground is a terrible place to be. On a somewhat related note, I had a very unpleasant dream. I was a bit agitated by some things last night so I'm not surprised I had a nightmare, but my mind conjured up quite a creepy scenario. I had a dream I was babysitting a couple babies. Yeah, not children, babies. I'm not particularly well practiced in the area of infants. I dreamt they were on a teeter-totter and they fell off, hitting their heads! Baby heads are very soft. It was a tad graphic. I don't know what head injuries directly reflect in my mind, but they are scary. I've only had  a few dreams about them. Quite mortifying. I felt like I had dropped them, even though I hadn't really done that. I just hadn't kept them safe from falling. I've read about Shaken Baby Syndrome for childcare jobs. Words can't describe how I feel about it. It happens more often than it should, partially from a lack of education. Maybe it was just symbolism for misunderstandings in my world. Come to think of it they resembled my baby sisters. I've had plenty of thoughts about whether or not I should have a child, as well. Babies represent innocence, a need for attention. Dropping something expresses regret in being careless. I'm probably blaming myself about something(s) when I shouldn't be. In regards to Cushing's, many are made to feel like they must've done something wrong. Too emotional, too indulgent, too slow. Far from what they're trying to be or who they are in normal conditions. I believe it's in our genes. They're trying to augment the genes of parents with Autistic children. They probably look to that measure with various defects in humans. I'm sure babies hold strong connotations in my view of things and Cushing's, along with attacks to the Cranium.

Size MATTERS! Check out some photos and numbers!

                                       I went from a 9 to a size 16 swim suit (S to XXL)

From a 6 to an 8 pant's size (belt from 1 nitch to 3)

Once a 36C to God knows what now (double D? more?)

Even my shoes went from 9 to a wiiiiiiiiiiiiiiiiiiiide 10

And my glasses need to be tightened! Keep falling off my face!

I once weighed 115. I currently weigh 150 pounds after losing 20

It was not caused by eating or sitting around. It is because of CUSHING'S!

Now some of me is "fat" and some of me isn't. It's very awkward to find clothes that fit right.

Will I ever even out? Only time will tell. Time I wish I didn't have to waste.

       my thighs literally bursted out of my jeans                allergic reaction to prednisone

                                      or just an autoimmune response. not sure which.

The mascot of the future!!!

By golly, it's the last day of this challenge! While I have not posted every day, I have posted 30 things. Honestly, I have more ideas and won't necessarily stop blogging here. I'm really glad I did this challenge. Reaching out to other Cushies has woken me up to the good I can do in raising awareness for this disease. I'm not going to sit idly by when and if I beat this. It's not like I'm afraid of leadership considering a lot of things I've done in the past, although that is precisely yet another thing Cushing's tried to steal from me! Something I used to be very good at and worked towards being; an out-going person whom others could go to for help. My anxiety has been through the roof in the past few years. I intend to take my confidence back and lead a parade once more. I don't want Cushing's to rain on anyone else's parade. I have no doubt in my heart that I will be starting some sort of committee on campus next year. There will be obvious fliers next time. I am so mad that something like this exists and nobody knows a damn thing about it. Having an autistic sister, I was always on the side of not judging others, but personally experiencing such a crippling lack of self control makes that feeling even stronger. If this is the way my sister feels (if not worse), I love her even more for the wide strides she takes everyday. People should be aware that the phrase "anything is possible" goes both ways. My first post was about a mascot for Cushing's. I said it was like a unicorn. Something that is considered to be a myth. Now consider this: anyone who made up that myth based it on something real. Mermaids were based on manatees they say. The idea exists. Cushing's is very real, especially for the people it directly affects. In the end of this journey, I don't want to be a unicorn, a mermaid, or a sea horse. I want to be a pegasus soaring above all this mayhem. It's very hard to see that end at times, but that is the place I want to be. The photo is of me 3 years ago. I'm still about 30lbs away from her. Time to regrow my wings, even if I have to sleep 12 hours a night. That has seemed to be my only resolution to the sleeping problem right now. Needing 12 hours isn't a new thing either. I have always felt like I required a lot of sleep. Maybe that's the only way my body knows how to fight effectively. Don't ever call someone lazy without the full story. You never know if they might have a tumor growing inside them among other things. You don't know if they have lupus. Or a mental disorder. You just don't know, so don't pretend like you do. Everyone is fighting a battle and grasping for their wings.

Recovery is like becoming a submerged horse

To keep up with my horse metaphor and since I keep whining so much about the recovery process, let's talk about the little I've read/heard on the topic. Trying to recover from Cushing's is like being a sea horse instead of a unicorn. Or a mermaid! What do I know about being above water? Very little and those people above water don't know how to pull me back up either. They might catch a snag or two. I've read that Sarcoidosis or other immune recovery syndromes have been noted after surgery. From what I gather, it's the immune system overreacting after being suppressed for so long. It may attack itself. I get red bumps from time to time. Maybe I'm allergic to myself so to speak. Also, every time I read about symptoms I still have I see hypothyroidism. I'm continuing to notice a difference in taste and smell. My smell is more acute and I sometimes experience phantom smells? I already explained that things taste a little less appealing. This can be a sign of headaches, vitamin deficiency, or hypothyroidism. Insomnia can be a sign of hypothyroidism. Seeing the pattern? I'm starting to think the thyroid gets all the attention! The adrenals and other endocrine organs don't have a chance. If someone ever asks you if you have a thyroid problem, check your other glands!!  Perhaps I don't have a low thyroid, but all these diseases I've listed are commonly mentioned as something that happens after Cushing's. I hear the word Hashimoto's thrown around the Cushie community often, too. That's a hypothyroid thing. I just hope my Endo is going to consider these things in the future, especially because I have a sister with similar qualities. Plenty of digestive and other issues have been  reported, as well. Stomach ulcers, gastroenteritis- to name a few. There is practically no information on this matter. It's no wonder I get edgy sometimes despite successful surgery as far as we can tell. If you think having it is rare, try getting over it. Because what I hear people complain about the most is it coming back, or experiencing continuous problems anyway. I don't feel like I have the whole me back. I was just so relieved at first to not feel like crying every 10 minutes, being able to concentrate at a much higher level, and getting my even-keeled voice back. I don't mean to be bitter, but I sometimes have dreams about the past when I should look to the future. I remember when things made sense, when I made sense. Recovery is a no bounds area. I don't know anything aside from the sea floor now and it's kind of lame here. In conclusion, I give an un-hearty smirk when someone asks if I'm better. I need another pamphlet altogether for that answer. Another Cushie was complaining that nobody keeps track of your progress after surgery. How are they supposed to know what recovery is like? It's a good point. No doctor has had ANY advice.

Best theory I've found: Acute sarcoidosis (Loefgren’s syndrome) and immune reconstitution

(I think this is actually just some person's paper. At least they are taking the time to consider this issue since as I've said before, I haven't seen many doctors doing it in general if at all...)

Which direction am I really heading?

Door 1: Recovery             Door 2: Relapse

If you've been wondering where I've been, I slept most of my weekend away. I could barely sleep for the entire week in comparison. Sometimes I feel better and sometimes I feel like there must be tumors all over my body. Maybe I need to lower my Cortisol- of course I'm afraid to do that. I still have 3 weeks of school left and an audition I want to do well enough in to get a decent role or any role. I still feel a bit more emotional than I'd prefer, too. Is it just general frustration? It's really hard for me to tell. I haven't been to any doctors recently. I couldn't tell you how I'm doing based on blood work at all. I don't know how much I weigh. I eat in small amounts. If I don't sleep well, I feel very sick to my stomach and have headaches. My skin is still dry and itchy. Something's bothering me and I assume it's just the redundancy of being sick. Or maybe it's that I think people give me the courageous label, which gets lonely. I'm not always miss perfect. To deflect that loneliness, check out the link below to a map of others with Cushing's. Five adrenal cases so far!

Click here to see all the Cushing's patients out there!