There is a school of thought that we all come to this planet with a preplan of the challenges we will face so that we can learn various lessons.
Apparently, when I was leaving the soul bank for earth, there was a breakfast meeting at which I was asked what challenges I want in this lifetime. I thought they were asking me what type of bagel I wanted for breakfast and I asked for an “everything”.
Last month I had a spontaneous pneumothorax (collapsed lung) and now this week I tore the retina in my left eye.
There comes a point in life where one just has to stop in their tracks and say “Eh?” What else can I say truthfully. I know I have a list of medical issues, the combination of which has christened me an “extremely complicated case”.
I go to doctors’ offices now and they excitedly ask if they can bring in a student doctor with them to examine me. The glee in their faces as they tell the students to listen to my breathing and the students hear nothing but air coming and going from my stage four scarred lungs which should sound like rustling plastic bags.
At the hospital there literally was a conference call between my pulmonologist, my sarcoidosis doctor in NYC, the attending ER doctor, a thoracic surgeon and the head of admissions to the hospital on how exactly to treat me, because as they put it, my case is so complicated.
And in all of it there is one person that needs to keep it all together, to have the voice of reason for all, to literally say no to certain suggestions, and that is me. I have to be my own advocate for what can and can’t be done.
If one thing this journey with sarcoidosis has taught me is to stand up for myself and say no when something just does not feel right. To be able to look at a doctor and tell him to explain to me exactly what it is that is going to be done and why.
How I am able to do that is to not expect a doctor to try and simplify things for me so I that I could understand, but for me to learn everything that I could about all of my conditions and know the medical jargon so that when I speak with doctors I speak in there terms. At their level.
I always amuse myself when when I meet a new doctor and go through my medical history using strictly medical terms and the look on their faces is priceless. I have often been asked if I have medical training.
The minute a doctor realizes that you know shit and most of all, you know your body, they respect that and are willing to listen to you and explain things to you if you say you don’t understand something. Doctors love to teach but only if they know you are genuinely interested in learning what the have to teach you.
Learn your illness. Learn the medical jargon. Learn the medical terms for the parts of your body. A doctor will be so grateful to you.
When I went to the retina specialist I entered his office and said “I have optic nerve head drusen, the gel is pulling away from the retina and my Ophthalmolgist is afraid that the drusen may cause the retina to tear”, don’t you think that was alot better than saying “My other eye guy says I have some nerve thing or the other and he wants you to check the eye”? Which explanation would get a better response?
When you go to a doctor, just don’t sit there and say nothing. Go with a list of questions. The more you know yourself, your illness and the medication you take, the more you will know what to ask. Know your medications side effects. Your new issue might just be a side effect.
No question is ever a stupid question. Last month my pulmonologist was giving me a hard time about not using my oxygen and I asked him a simple question that stumped him. He wrote to every other pulmonologist he knew and no one could answer his question. I went to the web site of a company and got the answer and sent it on to him. He told me that my information was very helpful and he sent it on to every pulmonologist he knew (he is on the national board of pulmonologist) and he has been getting back tons of thanks for the info I provided. So never think you can’t contribute either. (I will post a separate blog post about the info soon)
So even though I feel as if my body is falling apart slowly, I at least understand what is happening if not exactly why. I continue to live as normally as I possibly can and try my best to stay as positive as possible. Knowing myself, as much as possible about my conditions and being observant of changes in my body has saved me many a time, albeit sometimes I may take a little long to respond.