What Happened? How Low Can We….NO.

“What Happened?”, he exclaimed as he stepped into the room. “Beats me, guess my INR got lonely.” I replied. That was the start of my appointment with Dr. C today. I had my INR check. It was the first one at the 2 week spacing. Today my INR was too low. No major changes in my diet, no changes to my medication, no real concrete explanation, just another frustratingly low reading. After almost 2 months of my INR being consistent and in the range of 3-4 it was 2.4 today. I didn’t like it, my doctor certainly didn’t like it, he kept repeating so throughout the appointment.

Some of you may be asking what an INR is. The international normalised ratio (INR) is a laboratory measurement of how long it takes blood to form a clot. It is used to determine the effects of oral anticoagulants, most often Coumadin(Warfarin) on the clotting system. It is used to determine if the dose is appropriate or if it needs to be increased or decreased. If you want to see what a Typical INR appointment sort of looks like for me Check out my post, Always At The Doctors. They are doing away with those snazzy little papers though, and transitioning to a new form. Plus Now instead of seeing the Nurse Practitioner (who no longer works there), I have been seeing Dr. C for my INR checks and the nurse oversees the test part of my visit then he comes and talks to me about the results, adjustments that need to be made and the time frame of when I need to schedule my next check. Eventually I’ll need to post new pictures of INR appointments! 🙂

I knew it was going to be low today, I woke up to a tiny little splinter hemorrhage under one of my fingernails. Even though last week my Hematologist said those aren’t of concern, I’m going back to my previous thoughts that they are a warning that my INR is low. That has been proven to me a couple of times. Low in this case is still in the I should be protected from major clots, however given the nature of Antiphospholipid Syndrome, I’m still in danger somewhat of microclots, severe headaches, dizziness, vision issues, and m/s like symptoms.

We talked about my diet over the last two weeks and the only thing that was really different is I had chickpeas. He said it is a possibility that I have an odd sensitivity to them so we will keep that in mind. He said it is possible that it might dip a little lower than what I’m at if I ate them on Saturday. He’s hesitant to bump me up more than what he did at this appointment, so he told me to take an extra dose of 17.5 mg this week. I’m taking 17.5 tonight, Tuesday (this is the extra dose), and Thursday. I’ll take 15mg on Wednesday. I go back Friday to get it rechecked, unless I start having severe headaches, dizziness, visual disturbances, etc. Then I am to call him and come in right away.

While there I showed him a rash that had appeared over the weekend and he diagnosed it as Tinea Versicolor and called in a prescription for a steroid cream. So for the next week I get to apply this cream 3x a day. He said the rash is pretty common in Lupus patients and I’ll probably see it again from time to time. Great? UGGG!

I also took the opportunity to ask a few questions that had been on my mind lately. I asked what physical activities I needed to avoid and he said it was more about weighing risk vs benefit. To make smart decisions and to keep him informed. I also asked if there were foods I should avoid since I am on an immunosuppressant. He told me no and explained that while we were suppressing my immune system we weren’t wiping it out completely. Essentially Imuran is keeping my immune system in check and making it act like a normal person’s would, instead of being in overdrive like mine is since I have the autoimmune issues I do have. He said if I wanted to though I could take Vitamin C. He then added to be really careful with Multivitamins because they have Vitamin K. Vitamin K will make my anticoagulant less effective.

So here we are, another dip on the INR rollercoaster, just when it looked like we had leveled out. My thoughts are it’s either the chickpeas, stress, hormones, or an impending Lupus flare. My husband inquired if it could be the fact that I have spent extra time in the sun this past week. Who knows really. All I know is I hope it is back up on Friday. We shall see.


Happiness, Health, Well Being

Expectations come in all shapes and sizes. They can encompass many things. My greatest expectation was that I would lead a happy, healthy life. That my well-being was solid. Through-out my 20s these things were easy. I fell in love and moved to the city I now call home. I. Like most 20-something year olds expected my health to hold out and that my well-being would be great. Life was good, and happy. In my late 20s I convinced my husband we should have a baby. He is older than I, and has two adopted children from a previous marriage that are grown. I wanted a child of my own. I had no reason to suspect this would be an issue so we began trying for a child in the fall of 2012. In 5 short months I fell pregnant and then 10 short weeks later, miscarried. That is when my greatest expectations began to shatter. I sit here at 30 wondering what the next decade holds, I was certain I was going to rock my 30s. That they would be awesome. So far, they are off to an awkward start, I feel like I’m an awkward teenager again. I am not comfortable in my own skin, I miss feeling at home here.

So what happens when your body deceives you? What do you do when the things you thought you could trust are no longer true? Your immune system is supposed to be there to protect you. What do you do when it launches an all out war on you?

I catch myself thinking sometimes I should’ve seen this coming. The signs have been there. I knew my family history. I knew Lupus was lurking, waiting. Was this denial that it was in my genes some odd form of rebellion against my father? Alas, it’s on both sides of my family. So denying that it exists in one set of my genes does not save me completely.

I have to recalculate my expectations now. I don’t get to have the health I thought I would have for the rest of my life. Or at least not on the same scale that I was on before. I hope that my Lupus (that still seems so weird to say) is a case that can be well controlled by the treatments my doctors have begun. I hope that this isn’t too hard on my family. I hate having to watch them go through this.

I’ll find happiness again. I’ve always succeeded at finding happiness. I just have to sift through the hard time long enough and eventually I will make it to happier times again. Plus I have an amazing amount of support in my life that won’t let me stay down for too long.

So that’s what I’m doing. I’m at the crossroads, I’m 30, and I’m re-calculating my expectations.

The Day Life Changed

#work #wemakesigns #vinylgraphics

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I stood in this spot, 9 months ago. I was there with Doug, we were installing vinyl graphics on the window. These vinyl graphics to be exact:

As I stood and watched as he masterfully applied the graphics to the window, I was struck with dizziness, at the time I thought it was low blood sugar. Later I would realize it was the my body alerting me that there was something going wrong. It was a late July day. It was hot, humid and it was not even noon yet. I remember telling Doug and the lady we were doing the graphics for that I needed to sit down. After a few minutes the dizziness passed and I felt better. We finished what we were there to do and then went and ate lunch. We came home and Doug got ready to go to the place he works for massage. After he left one of our friends called and asked if I wanted to take a day trip the next day to my hometown to show her and her kids around and to see my family. I told her I’d love to. I didn’t mention anything that had happened because at the time I thought it was an acute issue. I phoned my mom after that and told her of our plans to visit. While I was on the phone with her I was hit with a double vision spell, this was the first of what has turned out to be many of these spells. Looking back I wish I would’ve gone to the doctor then. Though honestly I am not sure it would’ve made a difference, I went a few weeks later, with the same symptoms, and it still got me to the same diagnoses of Antiphospholipid Syndrome and later Lupus.

July 23, 2013, that is forever the day my life changed. Since that day I have felt like I was picked up and sat down into some random person’s life. It is almost like being dropped into a foreign land and expected to survive. I’ve had to learn a new language, medication names, medical terms, abbreviations. (R means Thursday folks! I learned that this week). 9 months, granted this journey started with my miscarriage, but I didn’t realize it, but I know thinking back I was aware 9 months ago something was wrong. 9 months I’ve known something was wrong. I often catch myself thinking, this is not me, this isn’t happening. I know it is, I know it is real, but there are moments, I really wish I would wake up and things would be back to the old normal, that life would be simple again. I will endure and I will get through the tough parts of this. I can remember early on my old PCP asking me if I was depressed, I think at that time I was still too scared to be depressed, and now I’m honestly not sure if I know the answer to that question or not. If I read the clinical symptoms of depression, then yes I am depressed, but it’s much more than that isn’t it? I’m still waiting on the Therapists to call me that my PCP has referred me to. I look forward to talking to them. One of my personal goals is to be able to come off of Mirtazapine at some point, which I am actually on for anxiety and insomnia but it is an antidepressant. I haven’t set a time frame for this, nor have I even mentioned it to my doctor. For now it is beneficial, it helps me sleep at night, it keeps the majority of the anxiety at bay, and it doesn’t leave me feeling like an emotionless zombie. Though I admit there are days I wish that were the case.

I’m going to end this because as I expected this has rendered me in tears. I still can’t talk about the first part of my journey without crying. It’s all part of processing it. If you are still reading thank you for letting me share my story with you.


I leave you with a peaceful picture and the namesake of my hometown. This is one of the places I took my friend and her two boys. I really thought that day may be the last time I would see this place. It was so beautiful. I’ve been back by a handful of times these last few months and each time I go I snap a new picture.:

Moravian Falls #falls #northcarolina #whereigrewup #waterfalls

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To The Newly Diagnosed Chronically Ill

Dear Newly Diagnosed:

I know it’s scary right now. I’ve been there. I don’t know the specifics of your situation, nor do you know those of mine. That’s not important right now. I want to share with you a few things I wish I had of had someone say to me at the beginning of my journey. I’m just a few months in, still at the beginning, but when I look back, I realize I’ve made strides from where I was, before I had answers.

You have a lot of information flying your way, and in a way it’s not enough. With each bit of overwhelming information, there’s a new question created in your head. It’s overwhelming. It’s terrifying. Doctor appointments will be overwhelming, write down your questions. Don’t be afraid to tell them you are overwhelmed, and scared. I cry in front of my doctors a lot. It let’s them know you are real, that this is affecting every part of you. That you aren’t just an illness. Also if you have skin rashes or the likes as part of your condition, take pictures and show them to your doctor, especially if they have the tendency to disappear before you make it to an appointment.

Find online support groups. Utilize Facebook, as odd as it sounds, there are an amazing amount of Chronic Illness support groups on there. It will help you to find others going through similar things. With that said, know that everyone’s journey with an illness is personal. Just because “Julie” is experience “scary symptom A” it does not mean YOU will. Also know sometimes people exaggerate online. You will learn quickly how to spot this type of behavior, if you are smart about it.

Breathe. You will forget to do this from time to time. I know I did. I still do.  Sometimes you have to take a few minutes and just relax. It seems to a common phenomenon across the board, 1. get sick, 2. develop anxiety issues.

Do not be afraid to ask for help dealing with anxiety/depression. If these become more than you can handle on your own, let your doctor know. There are plenty of options out there including medications, therapy, groups, etc. Do not suffer in silence. Please get help.

You will have a lot of different loved ones trying to tell you a thousand different things to ‘make you better’. They love you. They are trying to help. They mean well, but most of it will not make any sense because, they do not understand your condition. This will eventually get annoying. Learn to take it in stride, and love them back.

A harsh reality, you will lose ‘friends’. Some of the people who drift away from you will surprise you, and it will hurt. Some people can not deal with having a chronically ill person as a close friend. I hope you can be more graceful about this phenomenon than I was. I let myself get hurt more than I should-be. You will as a trade-off, learn who your true friends are, and you will strengthen those relationships and they will become even more awesome because of this.

People will say some really hurtful things without realizing it. They will be under the guise of being helpful or meaning well. They will come in the form of things like “I hope someday you can forget you are sick”, or “Maybe you should stop talking about being sick”. Realize you have every right to talk about your life and what is involved in it as much as you want to, just as they do. They talk about their crappy day at work, or their woes with divorce all the time and you listen, they should support you and be there for you when you need to talk about this part of your life too. The point I’m conveying here is, to us chronically ill folks, this is part of our everyday life, it should be okay for us to talk about it.

Friends and family members will go through stages of acceptance that you don’t expect. I still have a friend, who even after I’ve been officially diagnosed by my doctors, refuses to accept that I have Lupus. I guess she thinks I take the medicine for all the fun side effects.

Speaking of doctors, I have a few thoughts 1) You will see them a lot in the beginning, make sure you enjoy their company. I know that seems silly, but it can be the difference between being in complete misery every appointment or being near someone pleasant. I have 4 doctors, and I definitely have my preference as to who I prefer to see, based on personalities. 2) If a doctor is not a good fit, and you do not feel they are meeting your expectations, find a new doctor. It took me a couple of tries to find a Hematologist that was a good fit. I’ve been extremely lucky with my other doctors. 3) Also if you have one specialist, and need another specialist… don’t be afraid to ask for recommendations, my Ophthalmologist helped me find my Hematologist, and my Hematologist is the one who got me to my Rheumatologist.  I see a lot of -ologists

You are going to have good days, and bad days. Hold on, and try to stay focused on the good ones.

This is your journey, it’s your life, you will find your way, it may not seem like it now, but you will. There is no right or wrong way to do this. Sure there are some better approaches and some things that should be avoided, but know that you are still you. You are still a person, and not just a disease/condition.

If you ever want to drop me a line to say hello, to reach out and talk, please don’t hesitate to contact me.

You are not alone!



The Expected-Unexpected Reactions to Vaccines

Tuesday morning I started my day thinking everything was going to be okay. Around 11:15 I started having rapid fire migraine auras and it became evident that I was having a reaction to something. At the time I thought it may be the nasal spray Dr. C prescribed. I had just taken my dose and they started almost as soon as I took it. After the 4th one started in just a short few minutes I had his office on the phone at 11:30 and Doug and I were on our way to his office for a 12 o’clock appointment with him a few moments later. On the way it dawned on me it was probably the vaccines making my very mild flare worse. By the time I got checked in and the nurse called me back to the room I was almost to aura # 10, was experiencing double vision spells, and blurry vision, my joint pain had doubled in intensity from the day before and I was pretty miserable not to mention a little scared.

Claire was with him again, so she came in, talked to me briefly, checked me over, and then started to step out when Dr. C stepped in. He took one look at me and goes “You are in more pain today than yesterday and we need to stop this from getting any worse.” He went over the options we had, but had already made his mind up as to which one we were going to take. Prednisone was the course we took. It is in my file that I have a mild allergy to this drug. It makes me vomit. I have had one experience with this drug and that was 10 years ago. We had discussed a few times that we may need to try a round of them during a flare to see if it would help me. He wrote the prescription for 30 mg but told me to start with 10mg and see if that helped and to only take the lowest dose I needed, and once I started feeling better to taper down from there.  He also prescribed Phenergan to offset the nausea and any vomiting I may experience from the Prednisone. As I left the appointment Dr. C said he was sorry things were so rough right now, and that hopefully things would calm down soon. He also said he’d like for me to call my Rheumy and let him know what was going on, especially if things weren’t better by Thursday.

After leaving the office Doug and I went by the pharmacy and picked up my prescriptions. As soon as we got back home I took 10mg and as soon as it kicked in my migraine auras stopped. I was still in pain at dinner time so I went ahead and took a second 10mg pill. That was enough to start decreasing my joint pain, but it also required me to take a Phenergan.

Good call Dr. C, Good call.

Today I’m feeling a good bit better, still not 100% so it’s another 20mg day. I’ll see how tomorrow goes and go from there. I went ahead and called Dr. L and spoke with his nurse just to let them know what was going on. She is supposed to call me back if he wants me to do anything differently or has any other advice on what to do. I’m not scheduled to see him until May 19th but she said he may want me to come in before then, and he may want me to go back up on my Plaquenil dose, or he may start Imuran sooner than planned. So we will see.

This morning I was sitting on the couch contemplating calling Dr. C’s office and asking if I could see him for my INR check monday instead of the NP, because we are anticipating it being crazy because of the addition of the steroids this week and I’d feel more comfortable with him overseeing this week’s adjustment. My phone rang and it was the switchboard and I figured it was one of my specialists calling to change the date of an appointment but when I answered the phone it was Dr. C’s office and the receptionist on the phone said there had been a change in the schedule and they needed to change my appointment. So it worked out that my INR check got switch to be with Dr. C anyways, without me even requesting it to be done. This means I’ll see him 3 times in a week’s time, and for the 4th time this month. At least he has a sense of humor, and isn’t as intimidating as some of my specialists!

A Lifetime of Gratitude to Dr. D


I realize I threw many of you into the middle of this story. I’m sorry. I realize by doing so, I still have a lot of things that I haven’t explained that I need to, and I will in time I promise. The man pictured here, is Dr. D. He was my childhood Primary Care Physician from the time I was 6 weeks old. I was an oddball patient even as a child. Maybe that should have been our first clue.  He was my doctor for the better part of the 30 years I’ve been alive. True there was a lapse in my care after I moved from my hometown when I was 19, until I returned to his care when I started getting sick back in August. That was a decade long gap.

When I started getting sick, back at the end of July,  I knew he was the doctor to turn to. I knew he would keep me safe, and figure out what was wrong with me. I was right, he played a huge role in getting me on the right path to a proper diagnosis.

See a little back story, this man saved my life when I was 6 weeks old. My mom took me to see him because I was unable to keep my formula down, it was to the point I was not taking in nutrients and was starving to death.  He quickly figured out the problem and I began gaining weight, and thriving. That is how he became my doctor. He saw me through many other moments where my body did strange things over the years and got me through them.

So in August after developing dizzy spells, double vision spells, splinter hemorrhages under my fingernails, and a few other symptoms, I called my mom and asked her to get me an appointment with Dr. D. I was terrified and I knew he was my best shot at getting an answer.

Splinter Hemorrhage under my finger nail.
Splinter Hemorrhage under my finger nail.

By the time I made it to my first appointment with Dr. D I had developed those little lines under all of my fingernails. Essentially they were little lines of blood or little clots from the small vessels under my nails. They were one of the first clues that got us pointed in the direction of blood clotting disorders back in August. This was of course after Dr. D ruled out a scary heart infection called Bacterial Endocarditis as they also show up with that condition sometimes. They were one of many clues that pointed him in the right direction. Even with that I did not have a typical presentation of Antiphospholipid Syndrome. Most people who present with it, have strokes, heart attacks, DVTs. Those are all large clotting events. My presenting clotting event was a Branch Retinal Vein Occlusion. That is a small clot in one of my small veins in my Retina. A micro clot. It wasn’t diagnosed until October. The event actually happened at the end of August, but I thought it was a prolonged Migraine Aura. After it was diagnosed I immediately started Warfarin, I will be on it for the rest of my life.

At that point, Dr. D sent me to my first Hematologist, that will be a story for another day. Essentially that man Dr. G, ran a bunch of expensive tests that my insurance did not cover… and got me an official diagnosis. That was his sole role in my journey. The diagnosis he got me was Antiphospholipid Syndrome.

I started this post, with a picture from yesterday, I took my mom to her doctor’s appointment. She still sees Dr. D. So did I until the end of January. My insurance decided in the middle of January that I could no longer see him as my Primary Care Physician and that they would no longer recognize his referrals. That is how Dr. C became my PCP. So yesterday morning I got up, ate breakfast with my husband at 6:30am and got in my burgundy red blazer and headed to my hometown. It’s an hour and a half from where I live currently. Not too bad but its long enough of a drive that I anticipated it would make my joints a little stiff and angry. I stopped part way at a rest stop to stretch and use the facilities and got back in the blazer and continued my journey. I arrived at my mom’s (well grandparent’s and mom’s they all live in the same house), around 8:30 and spent sometime talking to them. It’s the first time I’ve really gotten a chance to talk to them face to face since I’ve gotten my full diagnosis of both APS and Lupus. They don’t really know how to approach me and I think are a little afraid to ask questions. I don’t want to overwhelm them, but I also want them to learn. So I will educate them a little each time I talk to them.

After hanging out for a bit it was time for mom’s appointment so we headed to Dr. D’s. Mom’s check up went well. Which was great news. She has diabetes and this was a check up for that. She sees him again in 6 months for that. At the end of her appointment he asked me how I was doing. I gave a real quick up date. Told him Dr. C finally had my INR semi stable, higher INR range, that my Rheumatologist  had diagnosed me with Lupus and that the plan was to start me on Imuran in May. He gave it is vote of confidence as for a good treatment option for Lupus. Then I thanked him for his role in getting me to a proper diagnosis and for all he did for me over the last few months, we both got a little teary eyed and then I asked if he minded if I got a picture of us together because he was an important person to me and always would be. Obviously he didn’t mind, as I got the picture. I was glad I got the chance to see him in person, and had the ability to say thank you. I needed  to be able to see him and say that in person. I didn’t get a chance to see him in January when my insurance dumped the need to change doctors on my lap. Dr. D is retiring in a couple of years, the medical field will lose one of the great old school doctors when he does. There’s something to be said for doctors like Dr. D. There’s not many left like him. While I didn’t always agree with his treatment approaches, or his diagnostic approaches, he is a damn good doctor, he was just old school in his approach, but that’s what he was taught in his day. You can’t fault him for that really. So with that aside, I owe this man a whole lifetime of gratitude.

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.