His words have always stuck close to my heart, wrung true in my head, and lasted forever in my ears since I first read them at a very early age. He's inspired me since I was a child, growing up in the war I called my home, and his words continue to inspire me to this day because I have found through my own experiences, my own growth, my own sacrifice...my strength. There is a meaning to suffering, a meaning to pain, a meaning to damage and broken things, hurtful things, because there is a meaning to life. People say that the reason why a broken heart is so awful is because you can't die from it, you live in perpetual darkness within yourself, and while that broken feeling itself will not cause death it creates pain so deep you wish it would just so the pain can stop. But every moment of pain is a moment for a lesson.
I tried to keep that in mind this week as I met with my lead doctor on Monday, a man I have trusted fully for more than six years and has successfully lead me through what has felt like countless minefields with minimum damage, to discuss how I had been feeling with the current treatments we had in place for my health. I was as blunt and honest as he always requests me to be and he instantly was worried, even more so as he finished his exam of me, sensing something was very wrong. He immediately ordered blood work, biopsies and CT scans to be done immediately and maxed out my Zofran (an anti nausea medication) to hopefully help me to keep fluids down and get some much needed nutrition into my system. I left his office knowing that the next few days would be incredibly stressful, full of non stop poking, prodding and questioning from dozens of people in lab coats all leading up to what will hopefully be sound results by Monday June 11th.
After the initial blood work was complete, with minimal bruising and collapsing of veins and the biopsies were complete I got a call from his office informing me to abstain from a few particular routine OTC medications until he saw me but to know that it wasn't anything we couldn't fix. I went back in for the rest of the blood work, leaving the day of rest in between because of the sheer quantity they ended up needing and the current state of my health, only to be bruised, the proud of owner of multiple collapsed veins and needle sticks in between my fingers by multiple butterflies. Not my favorite way to do them but under the condition, they did what they had to. The CT was next, with the dizzy and nauseated nature of my current state, spinning around in any machine is not the way I wish to spend my time. Thankfully it wasn't long, even though the injection required was most unpleasant. I left feeling a bit better, at least relieved that it was Thursday by now and I could thankfully be done with the entire diagnosis process, which I feel I have gone through over forty times now, once more and resume what I considered my 'normal' state of being.
The unknowing sense of possibility, and how endless that list is, makes the looming diagnosis hanging in the air so undeniably stressful that it becomes all you think about, all you dream about and no matter what you do to keep yourself distracted, you see it every where. This was made worse by an alarming phone call at a very early hour this morning. I ignored the call. Having not fallen asleep until almost 5am prompted by a very sweet and funny tweet reply from one of my favorite talents Josef Altin via Twitter, I was not really ready to get up before 8am. After being teased by him, a few times, to go to sleep, as well as a few others telling me how I surely needed the rest, I decided to shut everything off and get rest...of course thats when all my doctors decided to contact me regarding the test results.
I ignored the first call, sending it to voicemail. But when the second phone call came in (all my doctors have the same ringtone so I know its them without looking- it's the Jaws theme. And yes, it's quite appropriate) I realized that something had to be up. I didn't get to my phone in time to get that second call but within minutes, a third call came in. Each call was from a different doctor. I returned the calls in the order they came, or was about to as my voice mail popped up and told me they each left a message. The message left by my Rheumies nurse (not my lead doctor, whom I call Dr C) was by far the most unprofessional message I have ever experienced from the medical community. A community I have been involved in for as long as I can remember.
There was no tact to this message, and clearly she wasn't thinking properly as she left it. It's been on repeat in my head since I first heard it, telling me how imperative it is that I call back and make arrangements to discuss the 'serious abnormalities' on my results. Of course she didn't say it just like that, she added a few heavy pauses, stuttering, awkward phrasing and an overall tone that would make an inexperienced patient feel as though they are doomed to die quickly. Hell, it almost made me feel like that and I knew better then to jump to that conclusion, I knew she just made a mistake in the wording. However mistakes like that, they just shouldn't happen. It's not appropriate.
I promptly returned all the phone calls, speaking personally with Dr C and explaining the message I received only to hear that he was very unhappy with how it was handled. He reassured me that while there are abnormalities that this is something we are going to get under control and he has all the faith in the world in me that it won't drag me down, that I will rise to the challenge like I always do and this will just be a tiny blip on the screen at the end of the day. This made me feel much, much better. His confidence in it settled my nerves although the seriousness of his tone also settled the gravity of what is happening into me. And I guess thats the crux of it, because quite frankly I don't know exactly what is happening. I just know that something is wrong with me. I've felt it for awhile, they were able to catch it in the tests which is good because before it's been a lot more difficult to pin point my immune system and the way it works, and now it's going to be addressed.
I received a call an hour or two ago from Dr C's office to confirm that I want all of my tests and records released from my Rheumies office for Dr C to review and look over. I feel like I just ratted out a kid who cheated on a test in high school or something. But I don't have the time to feel badly for that, it's my health and my life we're talking about here and I'd much rather have my doctor be on top of every thing then not know the difference between me and another patient.
That being said. The nerves. They're still there. Resting firmly in my stomach and floating around nicely with that lovely nauseated feeling that I continue to have on a daily basis and have had for quite some time. I don't know what's going on to happen come Monday. I don't know what the tests, labs and scans will reveal. I don't know what the diagnosis will be or the treatment options. I don't even know how bad it really is. I don't know what my choices regarding my health will really be. All I do know is, like the lovely Frankl stated, “The one thing you can't take away from me is the way I choose to respond to what you do to me. The last of one's freedoms is to choose one's attitude in any given circumstance”.
