This morning I was awakened by the vibrating jarring sound of my phone as the alarm went off. The sound it makes when I forget to turn the ringer back up to its normal volume left. I groggily laid there contemplating going back to sleep while my husband got up for work, then I remembered I couldn’t this morning. I groaned as I moved my stiff body to the edge of the bed. Slowly I swung my sore knees over the edge of the bed and sat there for a moment trying to adjust to the sudden upright position. Sleepily I reached for my pill-box and opened the slot that said Thursday A.M. and took my morning pills, tossed them in my mouth and grabbed my glass of water. Swallowing I finished my glass of water and sat it back on my night stand. Not sure if my joints were ready to move I hesitantly moved to the standing position and tested them out. Okay, my knees were cooperating! Opening and closing my hands I assessed that at least this morning, my joint stiffness and morning pain levels were minimal. It was time to get ready.
I had laid out my outfit the night before. A light teal tank top, navy shorts, and my tennis shoes. Casual but it still looked nice enough that I didn’t feel under-dressed to be meeting someone for the first time. It’s funny how much us women put into these types of things, no matter the circumstances, because first impressions do after all leave their mark. After dressing I joined my husband in the kitchen and we chatted for a few before he headed off to work. After kissing him bye, and telling him to have a good day. It was time to fix my hair. A little water and coconut oil insured my curly mess stayed presentable.
A few minutes later at 7am I sent our roommate Doug a text to wake him up, because he was accompanying me today. He got up and we did our usual morning routine and got the pets situated, and I took my second part of my morning meds, Plaquenil, the one that requires food to be in my stomach. Afterwards I brushed my teeth, looked myself over once more and then started going down my checklist. Medications packed, yes. Tablet packed, yes. Paperwork packed, yes. We were ready so we decided to leave well ahead of schedule. Dr. L’s office is in a weird part of town, near two big hospitals so traffic can be a crapshoot. We made excellent time which means once we got into the parking deck we got to sit there for a while, which was fine because my stomach was a big ball of nerves.
At about 8:40 we decided to head on up to Dr. L’s office. It’s the second time we have made this journey, to the 6th floor so this time we knew which door to go into, and we expertly made our way to the back elevators we needed to be able to get there. Nervously I stood by Doug on our ride to the Office on the sixth floor. Once there, I signed in and waited for them to finish checking me in. As I sat in the waiting room I looked around, wondering what each person was there for, myself, I was referred to their office because I needed a Rheumatologist. At my first appointment I met Heather, the Nurse Practitioner. She assessed me, ordered labs, and said Oh My Goodness…A LOT. That was a month ago. The nervousness I felt today was much worse than what I felt a month ago. Today I was meeting my actual Rheumatologist, the man himself.
After what seemed like an eternity, okay really a whole 3 minutes, the receptionist called me up to take my co-pay and sign me in. I then took my seat back, facing out into the hallway where you can see the elevators, and the waiting straight across into another office’s waiting room. There is also a wall of windows, but I don’t dare get close to them because Hello! We are six floors up and I do not want to fall through one of those onto some unsuspecting person walking around in the lobby!
My appointment was scheduled for 9:15am and they took me back pretty much right on the dot! Impressive! I handed Doug my tablet and sat my purse down, the friendly nurse weighed me, took me to my room, reviewed my medications, went over what to expect when Dr. L came into the room, took my blood pressure and then handed me this dry erase ‘form’ with questions about various activities and their difficulty level and how much pain they caused me during the last week. I quickly filled it out and sat it to the side. Doug and I talked and joked around while waiting and a few minutes later Dr. L entered the room. He is the only doctor that has actually made it into my exam room looking like his staff photo! I was amazed. I told him I was excited to finally get to meet him, and that my Hematologist Dr. M had spoke highly of him and told me I was in good hands.
He then went over my lab results. First we talked about my Antiphospholipid Lab results and said that this second round of tests confirms that I have definite APS (he kept calling it APLS which is another acronym commonly used for it), and that I will be on anticoagulants the rest of my life. This I already knew and wasn’t too concerned with these results. Then he began talking to me about the Lupus related results. See here’s the problem. All of my Lupus labs, came back negative, and that seems to be a pattern with my family members that have been diagnosed with Lupus, it takes them years to finally have positive lab work, and I explained that to him. We went back over my symptoms, back through my family history, over various illnesses that were present on both sides of my family.There is Lymphoma, and Leukemia, but he didn’t seem to think I was showing signs of those at the moment, my symptoms simply do not support those. We talked extensively about Systemic Lupus Erythematosus being heavily present on both sides of my family. We talked about my mother having Rheumatoid Arthritis, and that my aunt died when I was 17 of complications from Autoimmune Hepatitis. My family is riddled with Autoimmune issues, and unfortunately a lot of my family members have been affected for many years without a diagnosis because doctors wouldn’t treat them without positive lab results. By the time we went through all of my symptoms and family history he had two pages of notes scribbled down. He handed me a gown and stepped out of the room.
I changed into the gown and had Doug tie the strings in the back. I am so glad he has been able to go to my appointments with me, especially the ones where I have to change into those horrid scratchy, awkward exam gowns! I then got on the exam table and waited for Dr. L to return. He brought up this diagram of a body that had x’s all over it on the computer screen beside the exam table. Then he began doing what I think all Rheumatologists love to do, the squishing. He squished my various joints, and each time I said ouch, or that’s tender he marked an x red. I commented at one point, ‘Hey today I get to be a robot on the computer screen today!’ It made him laugh. Good, because If I’m going to have to see a doctor on a regular basis, we are going to have to be able to laugh. He squished my finger joints, my elbows, my neck, my shoulders, my hips, my knees. My knees and fingers are what got marked red today. Then he stepped out again so I could change back into my clothes so he could come talk to me some more.
When he returned he said that he was going to call a specialist at Duke to ask some questions regarding my case, and if there could be some genetic reasons behind why Lupus wasn’t showing up in my lab work. Oh, awesome, my Specialist is calling another Specialist at a Nationally acclaimed hospital to discuss my case. That has to be good right? He went on to say that he wanted to run labs to make sure I could metabolize Imuran and that if I could he wanted to start me on it at my next appointment. The appointment wrapped up with him saying he would send a letter to Dr. C with his findings and treatment plans which are Definite APS, target INR range 3-4 and Systemic Lupus Erythematosus in which he recommends decreasing my Plaquenil dosage to 200mg a day from 400mg a day, adding Imuran as long as I can metabolize it and treating the symptoms as they come. He ordered more labs, to be sent to an outside lab to see if their lab returned different results, because, hey why not? He said it didn’t matter though. His diagnosis still stood regardless of what my labs said. We had been with the doctor for roughly two hours.
So there we were in that sixth floor office, and for the second time this week, I was handed the same diagnosis, Systemic Lupus Erythematosus.