Date: January 26, 2018
Location: EAMC Rheumatology
Time: Approximately 11:30 a.m.
Event: The Day I Lost My Mind
Three days after what would've been my daddy's 82nd birthday. Eight days before my two year clotiversary from pulmonary embolisms.
Ever since I was a teenager, I've had anger issues. I can explode at the drop of a hat if the circumstances are just right. Most of the time this does not occur in public or at work, it occurs at home. Home is where you have the most intense relationships and the place where those relationships have the best opportunity to push your buttons.
The day started off like most days...nothing overly exciting or adverse. It was a Friday which is normally my day off, but I had been very ill on Monday and although I had driven to work that day, I had only stayed one hour. So, I had agreed to come in after meeting the rheumatologist for the first time. I had asked my husband to go to the appointment with me, but drive separately since I needed to leave for work immediately afterwards.
Hold on. Let me backup a bit. Just over two years ago, I was diagnosed with multiple bilateral pulmonary embolisms. I was SHORT-OF-BREATH. That's it. No pain. No weirdness. Just NO AIR.
It started around the 2016 New Year. We were with my mom in Florida and I thought I was coming down with a cold. By the next week, I did have very, very, very minor pain in my left flank. It reminded me of pneumonia. So, I went to a local clinic because I couldn't get in to see my regular doctor. She asked me all the normal questions, I didn't have the flu, but maybe I had a virus or could be bronchitis/pneumonia. She sent me to the hospital for a chest x-ray. It was negative for anything. So, I took the antibiotics. No change other than the pain in my side disappeared. I actually felt worse. The shortness of breath was getting more obvious.
So, I waited a week and then made another appointment, this time with my doctor's P.A. Same round of questions, same tests, negative. More, stronger antibiotics. Another week, another appointment with the P.A. This time not only did she do a chest x-ray, but also an EKG and prescribed an inhaler. The shortness of breath was SO BAD at this point, that I couldn't really carry on a conversation. It was like, "Hello!" BREATH "How" BREATH "are" BREATH "you?" BREATH. I am not kidding. My co-workers couldn't figure it out either. And by the time I got home from work (I drive about 25 miles one way), I was useless. I went straight to bed day after day.
A week later, Wednesday, February 3, 2016, as I was crossing the street to go into work, I almost fainted in the middle of the road. I made it to the bottom of the six stairs and it took EVERYTHING within me to make it up those steps. BUT hard-headed me, I felt better after I sat down, so I just chalked it up to whatever was going on inside me.
Later that morning I had to bend down to get some paper off the floor for someone I was assisting and, again, I was GASPING for air. She commented I shouldn't be gasping with just a chest infection (that apparently I didn't have because no one could find it). Immediately after I got her settled, I went back to my office straightway, yet turning and making a dash for the restroom. I had a killer headache and I thought I was going to toss my cookies. I never did, but I looked at myself in the mirror and said, "You've got to get someone to take you to the ER. Something is not right."
My dear co-worker took me to the ER...of course, I had to fill out the mounds of paperwork - if you're short of breath like that, call an ambulance, it's much less to think about. After waiting in the ER for what seemed like much too long, I was triaged. At that moment, my oxygen was like 94 - must have been a fluke though because when I was taken to a room a few minutes later, I couldn't keep the 02 alarm from going off on the monitor. My 02 level was 85. No wonder I had a splitting headache. I had hypoxia - lack of oxygen to the brain.
Anyway, long story short, I was diagnosed with multiple bilateral pulmonary embolisms. Blood clots in both lungs. Started from a clot that broke loose in my thigh. Years earlier, about 2005, I had my gallbladder removed. Post surgery, I had what felt like residual Charlie horse pain in my left calf. I was concerned, so I requested an ultrasound. Turns out I had three blood clots in my leg - two in my calf and one behind my knee. I was in the hospital for a week and had 9 months of Coumadin therapy. I was told at that time that I was not a risk for future clots, but that I could not be on any type of birth control.
Over the course of the last two years, now have a blood doctor aka a hematologist, whom I see twice year. Through blood tests and a swollen leg, I found out I have May-Thurner Syndrome (a compressed iliac vein) and Lupus Anticoagulant. Now you may (or you may not) know why I was referred to a rheumatologist. I was tested to see if I had Lupus and it came back positive. Just because someone has Lupus Anticoagulant doesn't mean they have Lupus, but I wanted to know.
So, I received the positive test results for Lupus from my doctor in October and had to wait until January 26 for the appointment. I tried my best to prepare, but my preparations didn't really come in handy as immediately the doctor wanted to know why I was there. Um, because my doctor referred me due to the positive results. To which the doctor responded, "You don't have Lupus." WHAT? (I didn't say that aloud, but I'm sure my facial expression did.) After the shock of that statement wore off...here for three months I had been educating myself on Lupus, gearing myself up for how to deal with it long-term, and, honestly, after years of failed tests and unknowns, I had a reason for my ridiculous bouts of FATIGUE. All of that was shattered in a matter of seconds.
BUT what was worse, she started harping on my diabetes after I told her I had been diagnosed with Gastroparesis 2.5 years ago. Her reply to that statement was, "Oh, so your diabetes is OUT OF CONTROL?!" It was definitely more of a statement, a proclamation really, than a question. Again, I'm sure my face said everything. I was so shocked at her statement that I was speechless. NO. My doctor says my diabetes are under control. I've NEVER been told it was out of control, b**ch. I wanted to add that last word, but decided that probably wasn't the best idea. I was sitting there taking a verbal assault because this doctor decided to "go off" on me about my diabetes. I work my butt off to keep my numbers down...and this, this is what I have to listen to. Some holier than thou woman who thinks she knows something about me that she, in fact, does not. I was TICKED.
When she left the room, the downward spiral had already begun. I'm sure my husband could see it happening...we paid our dues (insert rolled eyes) - in my opinion, she should've been paying me for the verbal assault she just laid out. Don't worry, I won't be back to this office. EVER.
I was carrying on about her all the way out of the office, the short walk to my car, and as I got into the car. My husband tried to calm me down, but I was having NO PART of it. Who was she to tell me? She didn't know JACK about me. I got in my car, screamed at my sweater vest that was unraveling literally in my hand, pulled it off and threw it in the backseat. I took a few breaths because I knew I didn't need to drive mad. Driving and mad do not go well together. I made it a ways towards work...probably nearly 20 miles when I lost my mind. I nearly ran into a car that I didn't see in the other lane and then I shot across all lanes and got in the turn lane. I was so shaken, I couldn't move. I semi-gathered myself, turned my car around (twice) and headed back towards home. I realized quite quickly that I was not going to be able to drive that far. I just DID NOT CARE. I got myself to a gas station. Called my husband and asked him to come get me.
I sat in that car...not crying. Not upset. Not mad. Not overwhelmed. Not anything. I did not care. I couldn't feel anything. Nothing. Nada. Nill.
And, let me tell you, that is a SCARY place to be.
