My FM friends and I have often shared stories about the “look” we get when explaining our illness to doctors and anyone in the medical field. Due to us being so few, chances are when we go to a new doctor, they have never heard of the disease. Their reactions are often priceless and to be honest, sometimes this is what gets me through some of my appointments.  

We get the “deer in the headlights” look, the “I don’t know what to say” look, the “confused but I’ll pretend like I know what that is” look, the “I’m sorry” look or the downright “what the heck did you just say” and “frightened” look. Well today I think I was able to pull off almost all of those looks in one shot!

The other morning I woke up with quite the allergy attack and sinus pressure. I continued to push through the day and tried allergy and sinus pills yet the sneezing, watery eyes and runny nose continued.  This morning I woke up with extreme, I mean extremely painful pressure in my left eye and on the left side of my head and nose. To the point I was laying in bed cupping the left side of my face with my hand. 

As much as I dreaded it, I was absolutely miserable so I went to the walk in clinic. Finally after over a half hour of waiting, I get called to a room and the fun begins as the nurse reviews my medical history. First off, I was very impressed that she pronounced Fibrosing Mediastinitis correctly. After going down the list of health problems she joked saying, other than that I am pretty healthy. 

Shortly after she left a doctor came in and explained she was a med student but assured me no worries because she’s had over 30 years of practice. Ok, I did giggle to myself as she began reviewing my history, knowing no number of years could prepare her for what I was about to explain to her. 

She started her exam by checking my vitals and then asked me to take off my heavy sweatshirt to listen to my heart, which I did. There was my heart monitor attached to my jeans and my electro pads were peeking out from underneath my tshirt. This led to several questions. As she began listening to my heart and lungs, even more questions. Why is my breathing so bad, why am I not getting full breaths, why am I not moving much air. She sat down in front of me waiting for my answers so I simply said my illness affects my breathing, especially when I am sick, hoping she would give me the “confused, but I’ll pretend like I know what that is” look. Nope, she asked me to explain what my disease was….crap!

I went on to say that for some reason my body developes an abundance of scar tissue and that scar tissue crushes the organs in my chest….and there it was…..the look…or I should say the lookS! Haha, her eyes got wide “deer in headlights” look, she pulled her head back as if I was going to hit her “frightened” look and her mouth opened so slightly “I don’t know what to say” look but then her face softened and she just stared at me “I’m sorry” look. She followed by saying she would go get the doctor. Yep, I’m guessing she’s never seen anything like this in her 30 years of practice! 

Her and the other doctor came in and again, the doctor listened to my heart, checked my vitals and then asked what my blood pressure was. The first doctor reported it was good then left the room for a second. As I was discussing my situation with this doctor I did share I had right pulmonary hypertension. She quickly jumped in stating I probably had them check my blood pressure on the left arm. We both laughed and I was impressed that she picked up on that right away.

Back to the reason I am there. I was diagnosed with acute sinusitis and bronchial issues, aka…sinus infection. Due to the fact I don’t handle medications well, I let her know zpacks work best for me however she said she usually doesn’t prescribe that for sinuses and got out her list. 

The first 3 meds at the top of her list were out due to me being allergic to them. A couple also didn’t work due to me being on Plavix. She then said the zpack is 8th on the list so began naming a few other ones. I pointed out that one of the meds she mentioned made me extremely sick so yep, I was ordered a zpack.

As we are figuring out medications my heart monitor is beeping. The doctor asks me what that means and I simply replied “nothing, it beeps all the time” and again, the “I don’t know what to say, frightened” look.

Hoping meds kick in soon and I can start to feel better. This week was the one week I didn’t have any tests or appointments in Iowa City so go figure I end up at urgent care! Oh well, tonight ended up being very entertaining for me and I was able to have a little fun in the midst of my lousy situation!

Tomorrow is a new day!