In the Lupie-Loop Edition #2


May is Lupus Awareness Month!

May Lupus Awareness 2014 Month Flyer-page-001


May is Lupus Awareness Month! Here are a few ways you can raise awareness! I plan on doing my part to help.  Do you?  I will also be taking part in Put On Purple Day! Will you take part with me?




Always At the Doctors

Always At the Doctors

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.

There’s a DJ In My Joints

After months of pain from Lupus, the first moments of relief, were like being at a nightclub and stepping into the night. Body is numb from the jarring sound but you don’t notice, until it’s gone. That’s chronic pain, a never-ending nightclub playing through my body and I CAN’T LEAVE.

Weekly Writing Challenge: Fifty

When Summer Comes

Springtime means looking forward to Summertime. I can’t say summer has ever been my favorite season. This year,I am filled with even more apprehension. It’s my first summer with my diagnoses. This time last year, I was still healthy, I had no idea in a years time I would be sitting here at my computer, writing blog posts about having Lupus and Antiphospholipid Syndrome. Last summer, was my first summer with symptoms, but I had no diagnoses. These will be my first hot, humid, southern, god awful summer days knowing what is wrong.

For those of you who live in the south, you know what I’m talking about. The summers here in North Carolina, can be unbearable. Temps can be unbearable and days can start off above 80. Add in the brow drenching humidity and there are days we just don’t venture outside unless we absolutely have to.  It’s the type of heat you can see when you look out over the horizon. You see it rising in waves. Swelling and engulfing, waiting to swallow everything.

Winter was painful, the cold hurt me with a pain in my joints that I can not adequately describe yet. Someday I will find the words. Someday I will tell you of this pain. I am a little hopeful that Summer will be less painful. I will have been on Plaquenil for a few months by the time Summer hits, and as long as the tests come back, I will most likely have started Imuran by then as well. So there is some hope riding on the warmer months.

I don’t know how my skin is going to react. Before now I use to tan beautifully. Let me rephrase that, I am olive complected, because I am part Cherokee, not because I lay out in the sun. Now when I go out in the sunlight, I develop rashes triggered by the sun, and my tail tale mark of a lupie shines across my cheeks, the ever so noticeable butterfly rash. It is true that not all people with Lupus have the butterfly rash, but I was one of the ones that was marked. As though my body decided to make it known to the world that ‘Hey! This woman has LUPUS!!!!!’  It’s okay, I’m not ashamed of it, and more often than not, I don’t wear makeup, I’m just not a makeup person, especially in the summertime, because of the humidity.

That’s enough of the things that have me a little apprehensive about summer. Now for the things I forward to for each summer:

  • Our 5 year wedding anniversary is coming up in August.
  • Warm summer nights, because this means on Friday nights when we go out for dinner and coffee with friends, we can take advantage of outdoor seating. I love sitting outside. It makes me feel more connected to the nature, even when we are in the city. Being a country girl, this is really important to me. It feeds my soul.
  • Fireflies, they bring back such precious memories from my childhood. From chasing them when I was a small child and gathering them. To just laying and watching them as I got older.
  • Stargazing, this has always been a favorite pastime of mine. It relaxes me and soothes my soul.
  • More time at the parks, warmer weather hopefully will mean getting out of the house more, and taking advantage of the parks in our area. There are some great parks here.


Daily Prompt

Office on the 6th Floor

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.

Printed Words Echo The Loudest

Up until this very morning, it has all been discussion between my doctors and I. Several weeks of hints to a diagnosis, hints of things to come, they have all been leading up to this moment. My joints have been telling a story for months now, between the swelling, and painful moments, the evenings spent curled up on the couch because I was in too much pain to move. The fatigue slid into my life, like a band of thieves stealing precious valuable moments, forcing me to slow down. The butterfly rashes, were finally officially titled as such, and could no longer be passed off as just looking rosy complected that day, now I seem to be forever lightly masked, even on my better days.

Today, April 1, 2014 Systemic Lupus Erythematosus appeared in print, for the first time, and is now officially in my medical record. You would think after hearing so much talk of it from my Hematologist, Ophthalmologist, Rheumatologist’s assistant, and especially from my PCP (we have talked a lot about Lupus)  it wouldn’t have affected me the way it did. I was expecting to see it in print this week, just not today, not from Dr. C, my PCP. Today it caught me off guard. It was one of the rare appointments where the word Lupus wasn’t actually spoken, we talked about symptoms and flares, but the word wasn’t mentioned.

It’s funny, I’ve thought long and hard about how I would feel…in that moment, when I saw those words for the first time, because I knew it was coming. I just forgot to consider it might happen today when I went for my weekly PT/INR Check with Dr. C. I simply forgot to consider it might happen like this, and just like that its all too real again, too fast, too sudden, and it’s something I can’t run away from and I have no choice but to accept it, learn to live with it and endure. To fight the good fight, and live life to it’s fullest. In that moment, words of several appointments played through my head, conversations with family and friends resonated loudly, I was saddened, angered at why all of this is happening to me, and even a little relieved all at the same time. Because at least with Lupus, they know what to do with me.

It worked out this way for a reason I know. After processing this for a few hours, I’m glad it was Dr. C that it came from. I have at least a little history with him. I will be meeting my Rheumatologist Thursday for the first time at my follow-up appointment. At least this way, I won’t be emotional in front of a doctor I’ve just met for the first time, because I still have an issue with crying in front of people I have just met. I am thankful to Dr. C for being the one to do this, he has unknowingly made the rest of this week a lot less stressful for me.

Dr. C said something at my appointment today on getting back to a point where I can focus on who Nicole is outside all of the medical stuff going on. This conversation was brought up because I told him I was at a point where talking to a psychologist/counselor would be beneficial, that things had finally calmed down enough that I was starting to process things and needed help. He knows I’ve found some amazing support groups relating to Antiphospholipid Syndrome and Lupus so he didn’t think we needed to focus on support that focused around medical conditions at this time. His words though…focus on who Nicole is, I just hope I can remember.

I know one thing that still remains the same as for who I am, my desire to help others. I will focus on that, and start seeking out ways I can do that. It will at least give me something to do with the energy and give me something to focus on.