Wednesday, September 21, 2011

Suck it up, Princess...

Wanna make your disease laugh? Tell it your plans. It's only been three days on one less milligram of prednisone, but already I'm in trouble. My digestion is not good. Each morning I wake up with terrible gut pain that saps all the energy from me. The exhaustion has stretched my morning routine from one hour to three. My sinuses and breathing are worse. And I'm cold. All. The. Time. My mood, reasonably, has tanked.

My mantra is: "Suck it up, Princess. The only way out is through."

It's frustrating and sad to have to go through this. You would think that the labs and tests from the other doctors would mean something. You would think that since all the other test came back negative, we'd want to rethink the theory. You'd think a doctor would want to avoid making me sicker. And you'd be wrong.

The world is not fair and yelling and screaming doesn't make things any better. It's a waste of energy that I don't have. I can't afford the luxury of anger, even if I am right. Challenging the authority of the doctor will get the door slammed in my face fast.

I also have to do this so I can prove to her I will "follow doctor's orders." It's a stupid game, but my doctors need to know that I stick by my promises even when no one is watching. I've got to play by their rules to get the treatment I need, even if that means unnecessary suffering.

My dad is a lawyer who does criminal defense cases. He's told me what being on probation is like. A probation officer can go so far as to demand a woman stop wearing make-up. They'll jerk you around and make your life miserable on purpose. It's all a test. Can you obey the rules? Or are you going to be sneaky and selfish?

I don't like being treated like I'm on probation just because I'm seeking help from medical professionals. But there are. No. Other. Options. I've got to have treatment so I've gotta suck this up, pull up my Big Girl pants, and soldier through.

And I've got to do it calmly and without hysteria, which is really difficult when symptoms flair. Even though it's completely reasonable for me to be upset over what I'm going through, I can't behave that way. No one can see what my disease is doing to me. When I get upset, it appears to be over nothing. Being emotional only makes me look like a drama queen.

I know I will be proven right. I can remember my calm and not be upset because I know the truth will come out. I can be patient with my doctor's bad theories and mistaken beliefs. She's gonna have to eat crow eventually. And if I want her to admit her mistake, I need to show her that I won't blow up at her. That means dealing with the current situation with dignity.

I am better than this disease. I am better than my doctors skepticism. I can do this. I can get through this to get the proper care.

And I can make it look awesome.


  1. OK, I am not trying to dispute your reasoning here but I will say that if I had listened to a few of my doctors along the way, I probably would be dead by now. So, don't let them jerk you around too long or into too deep of a hole. This is your life, your body and your future. And sometimes they have this God like stance that can harm the patient unfortunately. Good luck on your quest and I hope things work out for you.

  2. Thank you so much for your concern! Don't worry... I won't let em kill me ;)

    I agree with you. For the first 5 years, I fought like gangbusters. And I did finally find someone who got the right tests and got me back to health. But that was when I had a lot more resources at my disposal. Times are a lot tougher now. My options are limited.

    I've been thrown out of more doctors offices than I can count because I screwed up the doctor-patient relationship. I can't afford to lose this doc. I moved to Denver to get to a pituitary expert. I've gotta see if I can make that work. Even if it means an increase in my symptoms for the next 3 months.

    I'll be careful. I have an emergency shot I carry with me. I know what a crash feels like and how to manage them if they start. I'm not going to let myself be unsafe.

    I don't see that I have any other option than going through this. I've got to get someone on my side. Convincing them is the first step in that, even if it is an unpleasant journey. :/

  3. Good luck with the steroids... I know just where you are at as I'm stumbling through the same horrible course at the moment. Only 12 days to go (not that I'm counting)!

  4. Good luck with the 'roids! I've had good and bad experiences with doctors telling me what to do. Sometimes they know what they're talking about and sometimes they don't. I'm not really sure when the trust my gut on that since my gut is normally trying to kill me. I hope things get a little bit better soon! And that you can find things/people to make you smile & laugh to keep you sane. <3

  5. Oh, Nat! Thank you... I don't know if I'm going to be able to get through it. You give me courage. ^_^

    Rachel, thank you for the good luck: I need all I can get! ;) I'm lucky. It's pretty easy for me to know when I'm undermedicated or overmedicated. My endocrinologist in Seattle totally trusted me. That's how we were able to discover this was autoimmune in the first place. She let me come off my meds just with a phone call.

    I'm hoping if I can get through this with little complaint, I'll be able to bring her over to my side and get her to trust me... but that's a big if.