Another photo comparison because DAAAAAMN!!!

                WITH CUSHING'S                                            AFTER CUSHING'S

Slowly transforming you from the inside out, as they say

Can you believe I look close to no 1 again? I'm now at 124lbs, although I need to stop dropping the weight as I've said before. That drug they gave me seems to be helping aside from the fact that I think I'm having the "sleeping problems" side effect. It's by no means cured me of anything. One thing to note is while I get less sick, I am often hopelessly hungry anyway. The diet of cutting everything up and eating select foods has been fairly painless. I wanted to say something about Cushing's: it changes you from the inside and the out and it does it unknowingly for how many years? Hormones have been at me since I was13. An extra 50lbs may not sound like a lot, but it is. It also  just makes you sad all the time. I had thought it was a normal feeling- how sad is that? I've seen an occasional photo timeline for it, yet there's no way to measure the emotions. I've always wanted a way to describe it but I just can't. I remember never being able to know what I wanted to say or express myself aside from raw tears. It's a mental disability for sure although I couldn't give you hard documentation for it. As for looks my hair was falling out and I itched my scalp until it blistered over. I feel like it's a slew of ailments wrapped into one; a perfect Cushie sandwich. Some people assume it was a mild problem. If they were aware of all the various, intricate things I went through and my body went through, I'd hope they'd see there's nothing simple about it. Most of my Cushing's compardres go through remission periods. I was lucky it was on an organ I could just take out. Granted it messed up other organs in the process. When I discovered that gallstones are caused by rapid weight loss, genes, and women I kind of wanted to hit someone. RAPID WEIGHT LOSS! Hello? Remember me? Yet another thing people with this disease go through is the lack of post-op care. It's no wonder I have no clue what to expect. They don't even know much less pay attention. I know my endo takes notes, but I don't even know how many cases he's had in the past. He originally told me I might have to go to the Mayo for answers. I finally figured out why my liver enzymes were fluctuating, too. Gallstones do that when they travel through the system. Would've been nice if a doctor or nurse had explained such a concept to me. I thought my liver was scarring. I never did get to talk about my stomach scope experience. They didn't find anything, but "twilight" drugs are a joke. I remember that well. There are worse things. I made a quite a face when the specialist asked if I'd ever had a colonoscopy. No thank you, not today. I'm taking miralax and magnesium. I clearly need to add to that medication list I posted in April. I've added at least another 6. Oh, and while we're on the topic, Oxycodone makes me sick. I'm not a pill junkie, I just do better on dilaudid. I tell ya, no one listens to us cushie sickies... From what I know, pain tolerance is a big deal for us. Cortisol levels physically numbed us, after all.

And now SAILOR MOON SAYS! I did not get Cushing's from:

 

no exercise plan                               eating hamburgers

 

     sleeping too much                           not "watching my figure"

Also, this: (because it makes me like my boobs better)

Just offering a little perspective...

30 million people in the U.S. have rare diseases,

28 million have Cancer -rareproject.org

Are rare diseases really so rare?

If this is karma, I'd like to punch myself in the stomach!

Well, I am not feeling too good about my "recovery" lately. A cushie once said, "Cushing's is the gift that keeps on giving". Considering it's already caused or further exasperated two other problems in me, I'd have to agree. Why is there a picture of me eating cake? It's because I'm starting to think I'll never enjoy eating again. I have gastroparesis and from what I can tell, it's permanent. Of course, if we take my gallbladder out that might make it more manageable. And the only decent treatment for gastroparesis is medicine- medicine that has serious side effects. Just look up tardive dyskinesia and you'll see why I'm wary. It'd be fine if it wasn't usually irreversible. Anyway, this means my stomach muscles don't move at the speed they're supposed to. I get full right away and then sick(er). I've been a little frustrated by people who tell me to just exercise or try this diet. I know they mean well, but I already do these things! It's a tad more complex than I'm getting credit for and I am seeing another doctor who is much like a nutritionist (I would like to remind readers that I am poor and he is not covered by my insurance). I've strayed lately because I think my body is craving calories like you would not believe. I weigh 129 compared to 170 in January. I'm losing the weight faster than I put it on. From what I read about eating suggestions for this disease: eat small portions with lots of nutrition. My body is starving itself in the opposite way it did before. Soft things like liquids, cooked vegetables. Nothing with citrus like oranges or things that will exert your digestion like broccoli. In contrast to that, I have gallstones and "sludge" as they put it. The diet for that is quite a bit different. It's not an emergency, but there's more surgery in my future. I better hope my dad's company is nice enough to let me keep the insurance. Suffice to say, if I am to feel better, it's not going to be for a long time. Yes, it could be worse, but I am very MAD. I'm mad at the people and doctors who don't take me seriously.  I'm mad about what I've already went through and what little it has gotten me. Cushing's doesn't just get better and messes with everything. I like this gastroenterologist I'm seeing but I rolled my eyes at him when he said, "Oh I don't think it's your gallbladder" and that he thought Cushing's didn't do this. On the contrary, I communicate with other Cushing's patients and trust me, there are others with this gastroparesis condition or something like it. Gallstones run in my family. It is very possible for me to have both problems if not more! Look at my track record for rare diseases. C'mon here. I'm upset because I'm nowhere near unscathed. I knew this was possible. Why nobody else did is beyond me. I'm sick of being sick. I got my emotional control back, I got my brains back. I returned to the theater, though it nearly burnt me out. Now I'm going to force myself through another semester of school before I have surgery. Am I scared like I was last time? I don't know. I don't want to know, so I don't think about it. My sense of humor is low and I'm hungry. Let's just hope we don't add another tumor.