I’m always at the doctors. Okay that’s an exaggeration. I do have a life outside of the confines of my numerous doctor appointments. There really is more to my life than Checking in for an appointment, talking to nurses, and doctors, and scheduling the next appointment. There is! It just seems like I’m always at an appointment right now. Today was my weekly PT/INR check. It is usually a quick early morning appointment I have with the Nurse Practitioner at my PCP’s office. This appointment was a little later than my usual appointments. It took her a little longer to get into my room, but it seemed like all the doctors were having busy mornings as a few of them were marked as being behind schedule on their little schedule tracker board in the front when we checked in. Doug came with me to my appointment so we entertained ourselves while we waited and started taking random pictures of things.  Here I am, at least my shirt and hair were cute today! Goofing off while waiting for the NP. #antiphospholipidsyndrome #aps #atleastmyshirtiscute #bloodclottingdisorder #hughessyndrome #lupus #lupie #lupustruth #lupuswarrior #lupies #autoimmune #autoimmunity #april #invisibleillness #alwaysatthedoctor #chronicillness #butyoudontlooksick #sle

Then there are these buttons in every room, and any time they leave us alone I’m so tempted to start pressing them (I am not an impulsive sort or I would’ve already pressed them), because they control the lights on the outside of the room above the door, they are a code to signal various things to the doctors and nurses.   I always want to push these buttons when I’ve been in the exam room too long. Cuz I know they are blinking a code to signal something…. So if I change what they were signaling…. Lol #antiphospholipidsyndrome #aps #autoimmune #autoimmunity #lupus #sle #lupie #lupies #alwaysatthedoctor

The nurse pushes them to signal to the doctor the patient is ready. Then if the doctor has to step out during an appointment he pushes them to signal something different. My appointments tend to be longer than average when I see my PCP so they tend to be blinking really fast when I step out into the hallway. Awesome.  I want to learn their code so I can communicate with them. I’m there often enough, I feel I should be able to.   PT/INR day! Waiting for the NP to get back to my room for my appt. #antiphospholipidsyndrome #aps #hughessyndrome #bloodclottingdisorder #autoimmune #autoimmunity #chronicillness #invisibleillness #butyoudontlooksick #lupus #sle #lupie #lupies #spoonie #spoonies #warfarin #anticoagulant

Pictured above is the kit that is in all of my INR appointments. It’s not the SAME one every appointment but you get the idea. It’s the same set up. Gauze pads, and INR machines literature on the left, little  blue and white finger pricker doodads in the bottom right, INR machine, test strips and alcohol swaps in the top right. It is a fairly simple process and I could do it myself, and maybe someday if I can get a home machine that my insurance covers, I will. First the machine is turned and the test strip is loaded. Then the process flows fairly straight forward and quickly. You only have a few seconds before the test strip times out.

Getting ready to get my finger stuck! #antiphospholipidsyndrome #aps #hughessyndrome #autoimmune #autoimmunity #lupus #sle #lupie #lupies #alwaysatthedoctor #bloodclottingdisorder #warfarin #anticoagulant

It consists of her sticking my finger, putting my blood on a little test strip and the machine reading it, to see if my blood is ‘thin’ enough not to clot improperly but not too ‘thin’ as to cause bleeding issues. Finally the NP arrived to do my INR. #antiphospholipidsyndrome #aps #bloodclottingdisorder #hughessyndrome #autoimmune #autoimmunity #lupus #sle #lupie #lupies #lupuswarrior #lupustruth #anticoagulant #alwaysatthedoctor #warfarin And finger is stuck and test time!!!! #antiphospholipidsyndrome #aps #hughessyndrome #bloodclottingdisorder #lupus #sle #lupie #lupies #butyoudontlooksick #invisibleillness #chronicillness #autoimmune #autoimmunity #alwaysatthedoctors

The number generated by this little machine dictates the dosage of Warfarin I take for the next week.  This week’s number was 2.9. My range is actually 3-3.5 and may soon be officially 3-4 but she thinks 2.9 was close enough so left my dose the same. So I’ll take 15mg every night again this week. Yes, I take 15mg of warfarin a night, every night. That is a MONSTER dose of warfarin. Most people take very small doses of warfarin, but then again most people on warfarin, have much lower INR ranges and are not dealing with the autoimmune issues and other issues that I am battling. INR 2.9 today. NP moved my 4/29 appt to see Dr C to next week so we can go over notes from my Rheumy appt and start working on my immunizations that need to be updated before I can start Imuran. #antiphospholipidsyndrome #aps #alwaysatthedoctor #hughessyndrome #lupus #lupuswarrior #sle #lupie #lupies #spoonie #chronicillness #invisibleillness #autoimmune #autoimmunity

This appointment also triggered a change in my follow-up appointment with Dr. C that was scheduled for the end of the month being bumped up to Monday. This was because I mentioned that my Rheumatologist may want to start me on Imuran and that would require me to get my vaccinations updated and would need a TB test. So the NP had them change my appointment date. So I will see Dr. C next week for a follow-up, and to have my INR checked. I even let them know it would need to be a long appointment as there were a lot of notes to go over. So let’s see, next week will put us 2 weeks into April, that will be the second time I’ve seen Dr C this month, and that will be appointment number 4 for this month. Oh and tomorrow…. even though it’s not my appointment, I will be going to a doctor’s appointment with my mom, she asked me to go with her. I’ll see my old PCP, but that’s a story for another time.


6 thoughts on “Always At the Doctors

  1. Press the buttons… play with the latex gloves.. always wear a shirt that feels like fun and above all else.. well, carry that smile with you, sister! 🙂 Somehow, we’ll make it through this. One step at a time.

    **hands you a spoon!**


    1. I always try to have fun at my appointments! It helps that the majority of my doctors have a sense of humor. At least the ones I see the most often! It’s sort of a requirement of mine. If I’m going to have to spend a lot of time with them in this journey…. we are going to have to laugh. I see my PCP the most, because well…. no copay, he’s the closest to me, he oversees my INR monitoring, etc,etc, and he has the best sense of humor out of all my doctors.It took me 3 appointments to get my Hematologist to laugh and that had me a little concerned, but I finally got him to laugh. Rheumatologist laughed during my first appointment…so we are good. Ophthalmologist, I owe him a world of gratitude as he was the first doctor to get me on the correct path to a diagnosis back in October. Plus he has a good sense of humor too. 🙂 Thanks for the extra spoon, let me know when you need to borrow one, I’ll keep one in reserve for ya! 😉


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