Endless Cycle…

Several weeks ago a couple things happened. I already mentioned I changed my anti-anxiety medication and my sleep medication. The update to this happening is that anxiety wise, for the most part I am in a much better place than I was while I was on Mirtazapine. Side benefit I have also lost 17.2 lbs since I changed to Venlafaxine and Trazodone. Granted most of the time I don’t have an appetite due Venlafaxine and the fact that I am also on Topiramate and my appetite is suppressed. This loss of 17.2 lbs has given me a total loss of my high weight at the time of getting sick back in May 0f 2013 so far to 35.2lbs. Still a ways to go before I want to check in with my doctor and get his advice on if I still need to lose a little more of if I’ve made it to where we are both happy with my weight. But at least I am finally making progress in the weight loss department. My suspicion that Mirtazapine was causing me to stall turned out to be right.

The second thing that happened shortly after the switch and the weight loss began was the pharmacy I use switched manufacturers of the Warfarin I had been getting. Apparently the old pills they were giving me were sugar pills because suddenly my INR started coming back high. My monthly INR checks were a thing of the past. I started going weekly again while we struggled to get my INR down. Finally we started making progress. Infact if you consider my weekly total dose prior to this happening was 110 mg and now my weekly dose is 92.5mg, you can see we significantly had to decrease my dose of Warfarin to get my INR to start staying in range again.

Meanwhile, I managed to develop bursitis in my shoulder, this is a story for a posting all on it’s own. I also developed a horrible tension headache/migraine which led me to getting a trigger point shot, that turned out to be way more exciting that necessary due to my body just being a barrel of laughs and having to always do something random to keep everyone on their toes (also deserving of it’s own post).

Currently I am battling a lupus flare, enduring another round of prednisone, a flare up of the trochanteric bursitis in my right hip which was doing amazingly well after my Rheumatologist did another injection at my appointment last week, until I did a silly thing. I actually thought I could get off the toilet like a normal person over the weekend after a trip to relieve myself. “No, No! We will have none of that missy!” said my hip. So I’ve been icing it, taking my meds like a good patient, and laughing at myself and the fact that I have managed to afflict myself with a toilet related injury (re-injure?) This type of stuff isn’t suppose to happen until you are much older right? Guess it’s time for safety rails, and grab bars!

Prednisone, ah yes my old friend. The magical drug that helps me get through flare symptoms, usually stops all the pain I’m having in it’s tracks and at the same time has the ability to send my emotional state of being bouncing all over the place. A few days into this taper I managed to become very upset by an email my Rheumy sent me. So I emailed him back. It was long, it included every issue I have ever had with any of our appointments, how things are being handled, and what I thought needed to be done. Once I get started I don’t usually stop when I’m in that frame of mind. After hitting send, I will say I had that instant ‘Oh crap, guess I’ll be finding a new Rheumatologist.’ Luckily we exchanged several emails, and I THINK, maybe this might have gotten us closer to being able to communicate and being on the same page. I follow up with one of their midline providers in Jan, and then see him again in March. I guess we will see between those two appointments how things go.

I get my INR checked Tuesday, and we will see see how high my inr has become during this course of Prednisone and with the extra meds I have had to take to deal with the pain.

Emotionally there is a lot on my plate, we are approaching the anniversary of my dad’s passing, holidays are generally rough all around for a variety of reasons. I’m doing a lot of thinking and processing right now. A lot of this needs dedicated posts to of their own.

Work has been great, and probably the most stress free area of my life. My client list is growing and working with my coworkers continues to be overall a positive experience that makes work enjoyable and not so much like work afterall.

So that’s what I’ve been up to since my last post. My apologies for not being around and posting like I had wanted to, but as you can see, life had some other plans for me. More posts with details soon. This time I promise.



Just book it, we will figure it out later

Here we are in March already. Time is flying and I blinked somewhere back in January and lost an entire month. The good news is, I didn’t lose an entire month to Lupus. Nope this time I lost it to normal life! I lost it to my studies of Reflexology, to being productive and just busy.

Things are going reasonably well for me right now. I’m about halfway through my certification program and I should be at a point of accepting clients by June. I’m rather excited about this. I would be lying if I tried to say I didn’t have some anxiety about how my body is going to hold up when I start working again. I will be in a supportive office with other amazing therapists and I know it will be an amazing experience though.

I was first introduced to Reflexology as a teenager by my aunt, who passed away from Autoimmune Hepatitis, so I feel rather passionate about my connection to this modality. In a way it is a way for me to keep her memory alive and honor her. I remember many a conversation with her about various reflex points and how they could benefit me. Especially the ones for migraines and nausea, as I have suffered from migraines since I was 11. As you can imagine my studies are bringing back some wonderful memories.

As far as health wise I had a small flare in my symptoms at the beginning March due to the bipolar weather we have here in North Carolina. The hot the cold, hot the cold weather pattern cause me a lot of pain in my joints and a few days of a continuous migraine. Luckily I was able to skip the round of Prednisone this time and just take a shot of Toradol and Phenergan to knock it down enough to get through. My INR has been amazing stable though, and in range. We’ve spaced my check to every 3 weeks now. That means on average I’m only going in 1-2 times a month now for those checks. It has been amazing, and such a change than every 2 weeks. I’ll enjoy this while it lasts!

Therapy is going well. She keeps reminding me I’m doing extremely well and that I can space my appointments out to 3-4 weeks but I honestly think keeping them at every two weeks is what is keeping me in the space that I am emotionally/mentally. Knowing I have that outlet, and safe space where I can go and get it all out every couple of weeks. So for now I’m going to continue seeing her every two weeks. It’s working, it’s not broken, why try to fix it.

Life is overall good. Busy, and never seems to slow down but good. I still have to take momentary pauses though when my body reminds me to. That’s something I’m not sure I’ll ever get use to. The days where I’m tired for no reason other than it’s just a brain fog, fatigue ridden lupus day. My time out days. I’m learning to use those for constructive things though. For now I use them for studying and catching up on small tasks. I’m not sure how I’ll handle them once I start seeing clients. But as the running joke at the office goes “Just book it, we will figure it out later.”

Spoonie Life

I am a Spoonie. Some of you are Spoonies too. Some of you are reading this and feeling a sense of togetherness and community. Though our symptoms may vary greatly and our conditions may not be the same, as Spoonies we are part of a huge support group.

For those of you not familiar with the term Spoonie let me offer you an explanation. A spoonie is a person living with one or more chronic illness that identifies with Christine Miserandino’s Spoon Theory. Spoon Theory is a dramatization/illustration of what life with a chronic condition is like using spoons. It’s worth reading through if you happen to have loved ones that live with chronic conditions such as Lupus, APS, Rheumatoid Arthritis, Asthma.

I have two conditions that make me a Spoonie. Lupus and Antiphospholipid Syndrome. They both cause their own set of problems and at times it’s really hard to tell which is the bigger pain in the rear. The scariest of the two is definitely APS. It is an autoimmune blood clotting disorder. Due to it I had a miscarriage May 2013 and then a series of TIAs over several weeks later that year. Autumn of 2013 I also suffered from a blood clot in my right eye and now have a blind spot because of it. Other complications from APS include chronic migraines, brain fog, and other neurological issues. Lupus also causes me chronic joint pain, rashes, chronic fatigue, flu-like symptoms, random fevers, and a plethora of other symptoms that have been difficult to learn to live with. Even the medications (this should read small pharmacy that I have acquired) have crazy side effects and have been an adjustment.

Life as a Spoonie means starting the day knowing I have to make decisions based on not what I need or want to get done, but more so based on these ruling forces in my life that change from day-to-day. My energy levels and physical abilities (number of Spoons) varies greatly from day-to-day. As a person that has never been one to set quietly on the sidelines, this has been a very frustrating realization and acceptance process. There are still moments on a day where I start the day with fewer spoons than I need to accomplish what I need that I get discouraged and feel hopeless. I constantly have to remind myself to take time out and reserve my  spoons. Running out of spoons puts me at risk for a full-blown flare of my conditions and then instead of having a day where I do low-key activities and take time off for myself, I may end up being down for the count for over a week.

It’s odd to view every task as something that may be the task that benches you for the rest of the day. That’s how my life is though. I know at any moment, even on days that my energy is plentiful, it could all vanish with no warning. Vanishing spoon syndrome is what I like to call it. So I try to plan my day accordingly and make sure I get the most important things done early. If I can get the important things done first each day, hopefully on the days I run out of energy before the day is complete, I can move my list of uncompleted tasks over to the next day to be completed tomorrow.

Being a spoonie has taught me the value of knowing that not everything has to be done when I think it has to be. That some things can be put off to another day. It has made me reevaluate how I do certain things and it has caused me to implement some changes in my life. I have also over the last year of being a Spoonie found ways to make the processes I deal with easier, and I’ve gotten creative with how to save spoons. That’s what you do though, you learn how to live life within the restraints your conditions place upon you while living life to the fullest. That statement seems contradictory but it’s the reality of it. It’s amazing how many contradictions being a Spoonie has brought into my life.  Here are a few of them. The amount of medicines I take just to feel somewhat close to normal, but I’ll never be healthy again. I’m on medicines that are considered High Risk and that could cause cancer. This came with a verbal warning that went something like this “This may cause Leukemia or Lymphoma but it’s our best bet at making you feel better. Plus the good news is we can cure those! We can’t cure Lupus”.  I see my doctors more than a lot of cancer patients see their doctors, I’ve actually been told this by both an Oncologist (who happens to be my Hematologist) and by a cancer patient who was recovering after a few rounds of Chemotherapy.

Most of all being a Spoonie has left me at this odd point in my life where I find it very hard to relate to a lot of people. I’m just very lucky and grateful to have a close group of loved ones that love me for who I am and that are very supportive and accepting of who I am regardless of the changes that have occurred in my life.

I’m excited to say I am taking part in the SUPER SPOONIES STORY SWAP. It’s a network of other Spoonies sharing their stories about their Chronic Illnesses and what life is like for them. I encourage you to check it out. It is a pretty cool project!




The Eyes Have It

Thursday I had my 6 month follow-up with Dr. B, my Ophthalmologist. He is the longest standing member on my team and was the first to mention APS back last Oct. when I first met him, when I first had the Occlusion in my right eye. This appointment was a long one, most of my eye appointments are. They range anywhere from 2-3 hours and I get shuffled from various rooms to do different parts of the exam before actually seeing him briefly for his part of the appointment.

This appointment, something new was added, because of one of my medications. I’m on Hydroxychloroquine, the generic of Plaquenil. This medication is commonly used to treat autoimmune conditions such as Lupus and APS. It is an antimalarial and while it is normally tolerated very well, it can in some rare cases cause damage to the retinas in some patients. Therefore, it is important to get visual field testing done regularly to make sure this isn’t occurring. Due to the lower doses that are prescribed nowadays this is less of a concern and I’m on 200mg a day so Dr. B said he wasn’t concerned at all really, so I’ll only have to get the test done every year for a while.

Here’s how the appointment went. I checked in, and waited for them to call me back for the first part. Eventually the first nurse came and got me. She took my vitals, updated my medications list, ordered the tests that needed to be done for the day, and did the vision acuity test. She then numbed my eyes and did the pressure test to make sure I didn’t have glaucoma. She then escorted me back to the waiting room to wait for the next part. She didn’t dilate my eyes at this point since I needed to do the visual field test. I should mention I absolutely hate how the numbing drops make my eyes feel. It’s just such an odd sensation! Not to mention they turn them yellow!

After a short wait the next nurse/tech came and got me and took me to a different room to take my retinal scans, I’ve had this done since my first appointment. Basically I put my chin on this little rest and I look into this big machine at this asterisk with one eye and focus on it and I can’t blink while they scan my retina. Then I have to do the same thing with the other eye with my chin resting on the other side of the rest. After this part she handed me off the next  tech.

This is where the new part came in I had never done before. She had me sit at yet another set and stare at a sailboat while she measured my eyes. Then we were off to another room to do the visual field test. This is the test I will have to have yearly from here on out. It consisted of me going into this tiny room. The Tech entered in some information into a computer that was hooked to a machine. It was squared, but had a hollow concave area where I was to stare into. There as a place to rest my chin after I placed an eye patch over my left eye. She handed me a controller and explained that every time I saw a flashing light I was to press the button on the controller. I settled into the chin rest and immediately felt claustrophobic. I have no idea why, it wasn’t like my head was actually in the concave area but I felt surrounded. She told me to stare at the four dots that were illuminating faintly in the lower middle area and to make sure I blinked normally while the lights flickered around. She then began the test. After several seconds the 4 lights went away and one brighter focal light appeared and she said to continue staring at it and to continue marking the flickering lights with a press of the controller. This went on for what seemed like an eternity. While this was going on her and Doug talked. I kept thinking, gosh this test is lasting forever! Kept wondering, how people with ADHD make it through the test. Finally the test was over. She returned to the computer screen and in a mildly panicked voice goes ‘Was that the eye with the occlusion?’ and quietly answered ‘Yes?’ She breathed heavily and in the same breath said, ‘Good! because there’s this whole corner where you saw nothing, and it clearly mapped where an occlusion would be.’ Uhh geez thanks lady! We then switched eyes and did the other one. There was no areas of blindness in the other eye, thank goodness! She then numbed my eyes again, put the dilating drops in and sent me back out into the bright waiting room to wait for them to dilate.

Several minutes later Dr. B’s assistant came and called me back for his part of my appointment. His room is all the way back in the right corner of the place. It’s a large room, with the exam chair and equipment, a shelf, a chair for a friend, there’s the place where his assistant sits, there’s also a shelf across the room where this model of an eyeball sits. I only remember this thing because at my first appointment he grabbed that thing to try to explain to me what happens when someone has a stroke in their eye. Now every time I’m there I see that thing and I smile. It symbolizes the beginning of the road to answers. It symbolizes the beginning of not being so afraid, of knowing I wasn’t insane after all, even though I had people telling me it was all in my head at the time, I listened to myself, to my body, I kept pushing for answers because I knew something was wrong. I was right. It symbolizes the beginning of a relationship with a doctor that has really gone out of his way to help me get to where I am today.

After waiting for a few minutes in this room, Dr. B and his assistant came back in. Dr. B is tall, lanky, older and dignified. He’s someone who enters a room and you just know everything is going to be okay. He shook my hand and asked me how I was doing healthwise. I updated him on everything and he then took a look in my eyes with all the special tools he has. He made comments to his assistant while doing so. Then after he was done told me that my occlusion was healed. The blind spot will always be there, there’s nothing that can be done about that, but the injury itself is healed properly. He was extremely pleased with how well it had healed. We talked about Plaquenil, and Imuran. We also talked about Lupus, and he dictated a note to Dr. L, my Rheumy. It went something like ‘This is a note for Andy L. I’m here with our patient, I’m recommending she come back in 1 year for her next check, she is doing well on Plaquenil and Imuran and I recommend the doses stay the same. I also recommended she start artificial tears to help with the ocular sicca you sited during your evaluation of our mutual patient. Patient is doing much better than when she first came under my care in Oct. Her BRAO has healed and I will see her in 1 year for next vision check.’ This part of the appointment wrapped up with him ordering pictures of my right eye and I chatted with his assistant for a few. She asked me if Dr. L had ever mentioned Undifferentiated Connective Tissue Disease and I told her I had seen it coded on my paperwork once, and since then it had just been called ‘lupus-like’ and things like that. That as far as I was concerned given my family history, that I have APS and everything else, it was Lupus. She smiled and laughed a little. She then went on to say she sees one of Dr. L’s colleagues and is being treated for UCTD as well but is only on Plaquenil. I constantly run into people who either go to Dr. L or to someone in his office. Seriously it happens at least once a week it seems. It’s crazy how frequent it happens. After the small chat I thanked her for her help in all this, she’s been there from the beginning too, so she knows how frightened I was that first day I sat in that chair. So she could see the difference as well. Then Doug and I made our way to the waiting room to wait for the final stop for the appointment.

A little while later the last tech came and got me. This is by far my least favorite part of the appointment. You take already dilated and light-sensitive eyes, and then you take pictures of them. This involves bright flashes of light and staring at a green light to get the position of the eye right for the pictures. It is not fun, and for several minutes afterwards I can not really see out of my right eye. The pictures are cool though. At some point I want to get copies of all the pictures that have been taken of my eye since October.

After this stop it was time to check out and I scheduled my appointment with him for July 2, 2015. That’s the next time I’ll see him, unless something new occurs between now and then that requires me to make an appointment. Oh… and the good news is…. even with the blind spot… my vision is still 20/20!

Until Next Year

I met him in January. He stood a towering 6 foot something and had a commanding presence as he entered the small room I sat in. I was a ball of nerves when we first met. He is an older gentleman with a kind face that is often framed with a pair of glasses that are ill fitted. He moves them up and down his nose as he talks and reads from a thick file he has carried into the room. His expressions were stern at first, though as time has gone by they have softened and I’ve seen a couple of smiles cross his face. He remains guarded most of the time, I’m guessing given his profession it is a learned behavior.  I’ll admit when I first met him it was at a point where I wasn’t paying close attention so some details escaped me.Things such as his thinning hair, or the fact that he always wears a white coat.

I can remember when we first met one of the first things he told me was that I had to find a way to calm down. I was still at a stage that I felt that was impossible. That I thought it would never happen.  I’ve seen him 4 times now. Each time he would say I was doing  a little better.

Today was the most recent of our meetings. Today will be the last time this year. Today he said I looked great, the best he’s seen me since we met. He kept repeating that I looked great. That he was really happy with how well I looked. He said that he was happy with where things are, that I am in good hands and that he is pleased with how I’m being cared for. Today I saw a side of him that I had never seen of him, that let me know why he was on my team. It was almost bittersweet hearing I won’t see him until this time next year. Then again, at least that means he isn’t planning on retiring yet. Today I saw my Hematologist, Dr. M. Today he also said that my care was better off with my Rheumatologist because I have a Rheumatologic Disease with a Hematologic Manifestation.Those are  big fancy words for “Lupus with a side of blood clots”. He will mainly be in the background in case of emergencies, consults, should I need surgery and those sorts of things.

Our meeting Today was brief, packed full of information and he vetted the Dermatologist Dr. L wants me to see. He also was happy to hear I was getting a medical alert bracelet. Today before we parted, he told me he was happy to see I had calmed down from when we first met, and that he knew I was going to be okay. It was over quickly and we parted ways. I headed to the check out and scheduled my first appointment for 2015. I won’t see Dr. M until June 8, 2015, assuming nothing major happens that requires me to see him beforehand.

It’s like a Stroke In Your Eye

Branch Retinal Vein Occlusion, That’s a phrase I had to learn in October. It’s a fancy term that means a person has a blood clot in a small retinal vein. I know this, because I have one. It’s not that uncommon in elderly patients. The problem is it happened to me when I was 29. Let me tell you the story. I had been getting these dark blobs in my vision and they would resolve. I thought they were a form of migraine auras. Then one morning I woke up with a dark blob in my right eye that was shaped like a shark, only it never went away. When I saw the man who is now my Ophthalmologist he took one look in my eyes sat back, took a deep breath and said ‘You’ve had a stroke in your eye.’ I about fell out of the exam chair and Doug about fell out of the chair across the room from me. At least I had an answer. There was a spot in my vision that had gone gray. He said a whole lot of words after that but I only remember a few. He went on to tell me that I had a Branch Retinal Vein Occlusion and that they rarely happen in people my age. He then grabbed my hands and looked at my fingernails and said ‘Yep just as I suspected.’ At the time my fingernails were covered in splinter hemorrhages, tiny little blood clots under my fingernails. He asked me if I had a family history of Lupus and I said yes. He said to have my doctor to test me for that and more specifically Antiphospholipid Syndrome. That the splinter hemorrhages, branch retinal vein occlusion and my recent miscarriage were all signs of APS. He dictated my entire appointment onto a tape recorder. I was in tears because someone was finally able to give me an answer as to what was going on. A direction. Dr. B was the first one of my doctors that mentioned APS. He would later be the doctor that convinced my old PCP to place me on Plaquenil as well. He has been one of the most helpful members of my team to date. He is also the doctor that has been on my team the longest. In that first moment though, he gave me answers or at least a direction to look in. For the first time since the bizarre symptoms started I felt I’d at least find out what was happening to me before it took me.

Branch Retinal Vein Occlusions are killers of your eyesight. A funny thing happens when you lose part of your eyesight. Or at least it did to me.  My brain in trying to make sense of the newly formed blind spot in my right eye tried to put random images in that spot. So I’d be sitting talking to my loved ones and a random cat would pop into that area of my vision, out of no where. Logically I would know a cat didn’t belong there, but there it would be. The freakiest one was an image from girl scout camp, a place I haven’t been in 16 year. I thought I was going insane. Charles Bonnet Syndrome, is the official name for this phenomenon, which I learned after a few weeks of it going on. There is nothing more unnerving than sitting in a space and seeing a random image that you know doesn’t fit. Hallucinations because your brain is freaking out, is not a fun thing. The brain is pretty smart though, and that’s how it tries to compensate for the blind spot. Something else pretty amazing happened, my brain eventually stopped seeing the blind spot when I have both of my eyes open. That’s right as long as I have both eyes open I see mostly normally. That’s pretty cool. If I close my left I have a pretty significant blind spot hanging out in my lower not quite center right vision. It still sometimes looks like a shark, but mainly like a shimmering grey void. Not at all what I thought blindness would look like.

It’s made life interesting. I had to see Dr. B for monthly appointments until January. At that point my eye had healed enough and was  stable enough that he cleared me to go 6 months until my next appointment. I see him at the end of the month. A lot has happened since then. The last time I saw him we had classified me as Primary APS, now I have Lupus as well so that makes APS a secondary condition. My meds have changed. I have changed Hematologists (I was in the process of doing this when I saw him in January), PCPs, added a Rheumatologist and am adding a Dermatologist.

There’s a lot more to this part of my story, but it occurred to me I hadn’t really talked about my vision involvement yet and figured this was a good time to introduce it. I want to conclude on a positive note. I haven’t had a transient clotting event in my eyes in 4 months. My vision while I still have the blind spot, and some other lasting visual disturbances that I’ll go into later returned to 20/20 in both eyes. The clot  may have impaired my vision but it didn’t totally render me blind. I have that to be thankful for.

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.