Read this post through, it all makes sense once it comes together. My thoughts are scattered right now, it’s been a hard day.
Have I mentioned that I’ve been non stop seeing doctors? I don’t think that is quite the appropriate way of explaining, not only do I have to worry about having one main disease: pheochromocytoma cancer, but I also have to worry about the residual effects of having such an illness. You kind of forget about the rest of your body, you ignore symptoms, even if they’re serious, because you deal with enough and just can’t fathom anything else being wrong.
Well, in the past two weeks, I have had a PET scan, a chest X Ray, a ‘dynamic testing’ session, an appointment with a lung doctor, appointments with the chronic pain clinic, my endocrinologist, blood panels, like you name it!
There, I said it. I’m exhausted, and even though I am exhausted…. I still get up and do my best to make myself up into my ‘normal’ fabulous self, just so on those especially hard…close to giving up days, I can add a little twinkle to my eye and hopefully let that magic take over the rest of me. When you look sick, you feel sicker. I swear! So, this morning I was going to have to get up at 4am to get ready and make the three hour trip to the hospital, and conquer not one but two different tests and appointments, all while being exhausted, overwhelmed, in pain, and uncomfortable. So I said to myself, why not take a bit of time and make myself look better and hopefully in turn feel better?
Result? Well… I looked great, I was in a wonderful mood, but I still felt awful lol. There’s only so much a little makeup can do, right?
Nonetheless, I was ready to conquer the day, it really did give me just that bit of extra happiness to be able to make it through another difficult time.
After all these long car drives, and the pain procedure I had a couple days ago, I’m barely mobile right now. My pain is at an all time high, and we’re working to control it, but for now it’s in the highest amounts still, which in turn means getting around is a lot more challenging.
Serge follows me with a wheel chair in the hospital incase I get too tired or too much in pain, he’s done this for some time now. At first I would say “I don’t need a wheel chair, I can walk, don’t be ridiculous”, just because you can walk, doesn’t mean you don’t need some help from time to time. I still normally argue each time we go to the hospital, and try and be proud and walk the first bit and let him push me out when my abdomen goes into complete nerve shock dagger mode.
Today was that time. Not only that, but everything was weak, nauseous, and my heart was going nuts from the pheo attacks. The testing I was having done was a special procedure to measure the function of your adrenal glands. I only have one left, and they’re worried it’s not functioning properly. Which in turn puts your body in crisis, because it can’t produce the hormones and adrenalines you need to survive, and can be fatal. Often overlooked, my amazing doctor is thorough and is making sure my remaining adrenal is functioning as to not add anymore problems to our list.
So this test they basically inject you with the hormone your adrenal naturally produces, but in turn it stimulates your adrenal to produce the hormones so they can measure how much output is happening. Obviously because I have pheochromocytoma, the tumors are already producing too much of those hormones, so when they injected me, it made me go into an adrenaline overdose if you will? It was unpleasant, and was another part of the miranda feeling so awful today story.
Not having a choice of whether I wanted to be stubborn or not, I had to be pushed in the wheel chair because I could hardly walk. So here I am, feeling all pretty on the outside, feeling like death on the inside, and sitting in said wheelchair alone, waiting for Serge to get the car and help me out, and into our vehicle.
At this point it’s been 24 hours since I’ve slept, I’m now in full adrenaline attack mode, my pain is at a 250000, and I just want to go home. I get an abrupt tap on my shoulder followed by “you can’t just sit in these chairs, they’re always short in the hospital. You can’t just sit and relax while other people need them”
I couldn’t even get a response in before he realized he may be wrong and said “are you being pushed around in the hospital in this? Because sometimes people just take them outside to eat their lunch or smoke, and just take breaks but we need them because we have sick people here”
I wish I could say I had a very harsh witty response to which I would say “I have cancer, and those sick people you’re referring to? I’m one of them. Thank you for judging me based on my appearance, do you think I enjoy being twenty four and having cancer and sitting in this chair?!? Just because I put on a bit of makeup this morning, doesn’t hide the tears in my eyes from pain, it doesn’t erase the worried expression on my face as I wonder if another vital organ is failing in my body, it doesn’t excuse you from being so ignorant when it comes to people being chronically ill!”
No, I didn’t respond that way. All I could manage was “yes, I’m one of those people who need this chair, I’m just waiting for my husband to pick me up” I don’t cry often, but I couldn’t help tearing up a little, thinking about the exact irrational fear I had two days ago, about being judged based on your appearance. I limp, and hold onto my husband for support when I walk, but because I look ‘pretty’ people can’t understand how I can also be so ill.
I remember a couple of days ago in my blog post, I mentioned for the first time how it’s strange and uncomfortable for me to be in a wheelchair the very few times I have to be. How my pride gets in the way and I want to be strong and not have to still be in so much agony at this stage. Complete strangers in the hospital say to me all the time, “you’re so young, you’re so young to be sick, God bless you, you’re such a beautiful girl” people’s perceptions is that when you’re beautiful, it’s more surprising you’re ill. People are just way more curious when you’re young, it’s horrifying to them that their own children or friend or family member can be experiencing what they see me going through. So I want to be strong, for myself, for strangers, for my family, for my friends.
Except sometimes as strong as I am, I need help. I need to lean on Serge to walk, I need a wheelchair sometimes when I can no longer make it, I need to crawl up my stairs on my hands and knees. I don’t need to be miserable because I’m sick.
Today I got up, made an extra special effort because I was having a bad day, and my belief that looking great when you’re feeling bad came crumbling down when a complete stranger judged me without knowing a single piece of information before accusing me of taking a lunch break in this damn wheelchair that I was apparently not entitled to.
I couldn’t help but to notice every single person stare at me for the rest of the day, every thought went through my mind “do they think I’m limping for fun? Do they think these tears as I sit down against the wooden chair are just because I like crying? Why is everyone staring at me?!?
I shouldn’t have let that one person get to me so much, looking fabulous is my thing, it’s what keeps me in control of my body when I no longer am, and shame on anyone for making me feel worse than I did today.
Please, try and learn from what I went through today, whether it’s to not be bothered by someone else’s judgements, or to simply be the one to not judge. Peoples lives are hard enough as it is, so be kind.
Next time I’m going to look even more fab, because that’s what helps get ME through! After all, this is
Pheo VS Fabulous