6th Floor Office Appointment Notes.

Into the parking garage to park. Down one elevator, up the next. The familiar pattern leads us to my Rheumatologists one office and to the doctor that I have slowly realized everyone else defers decisions to and is more concerned with. The weirdest adjustment I’m dealing with right now is that since getting a Rheumatologist, everyone wants to know what he is saying, what his decisions on everything is.They are much more concerned with who my Rheumatologist is. It seems like an overwhelming amount of power of my care lies with this individual. This in turn is requiring me to learn to put a great deal of trust into him. Slowly I’m getting there. After being “burned” by a few doctors in the beginning of getting sick,  I find it harder to blindly trust doctors these days so it takes me a while. Each appointment though I get closer to being comfortable with the amount of trust I must have in Dr. L.

Last week I had my 1st Rheumatology Appointment of 2015. Overall it was a positive appointment, Dr. L was in a great mood and we covered a lot of the concerns I had with my conditions and medications. My Rheumatology appointments tend to cause me more than the other doctor appointments but this one went smoothly and other than the fact that I am still waiting on pending lab results, which has me scratching my head a little bit as they are marked as received. Hopefully soon I will be able to see the results as well.

I went over notes from my last flare with him that happened back in Nov. and how Dr. C and I handled it, he was okay with how things played out. If I should experience another once before my appointment in May I am to try get into see him. If not I’m to document it with pictures and such as best I can. I told him about the rib pain I experience during flares and he made sure it wasn’t my liver or gallbladder (I tried to tell him I was sure it wasn’t). He wanted to be sure. I also experience a cyclic flare in my joint pain that coincides with my menstrual cycle so he wants me to try taking Naproxen beginning mid cycle (or thereabouts) to stay in front of the pain to see if that helps prevent it from getting too bad. We went through our usual sequence of the joint squishing and I was happy to be able to tell him I was in less pain than previous appointments.

I talked to him about my desires to walk in the Lupus Walk in May and he told me that would be great, as long as I remembered to wear my sunscreen. Which made me realize why they hold the event in the evenings… D’oh!!! Sometimes my brain takes a little time to process. haha!

I’m pretty sure he was on a mission to see how many times he could say Lupus during my appointment. He issued a reminder that my INR was better off being kept 3-4 and that he would send a note to Dr. C stating his thoughts and notes from this appointment. Fair enough. Hopefully those notes will reach Dr. C before my Follow up with him next week. That would be helpful.

We discussed the fact that azathioprine was a little difficult to refill last month and that the pharmacist said I may have to switch medications due to the shortage. He didn’t seem a fan of that thought process, and neither did I. So he called me in more refills of it and the plan for now is to continue on that path unless we heed to go another direction. The medication is working well and I am for the most part stable. That is something to be happy about.

My next appointment is an 8am appointment in early May. Hopefully he will be in a good mood then as well! He is rather hilarious when he is in a good mood!


Good News from the 6th Floor Office

Last Monday, October 20th,  I had my October Follow-Up with my Rheumatologist, Dr. L. It was a late morning appointment. I recalled vividly the checkout lady cheerfully telling me that it was ‘the best time’ to have an appointment at their office. I have to say I disagree with that sentiment. Getting into the parking deck was anxiety inducing. The two cars in front of us, seemed to be lost and just stopped, dead in their tracks causing a back up at the entrance. Have I mentioned I’m not a fan of parking decks/garages to begin with? Yea, I’m not. We managed to get around them and went a different direction from the lost ones to find a parking space. Then we headed to the first elevator. Down to the first floor lobby of the medical plaza, that is also connected to a large hospital, we made our way. Then across the lobby and to the second set of elevators so  we could go up to the sixth floor waiting room.

I was excited and rather anxious. It takes me a while to get use to a new doctor and get comfortable. Dr. L also is sort of the one that calls the shots as far as my treatments and such goes. He is also the one that runs the bigger, more in-depth, and as you can probably guess scarier tests at this point. Granted most of the time they come back as we expect them to and there are fewer surprises at this point than there were a few months ago, but still Rheumatology appointments are a bit stressful still. Not to mention there is the whole mess of having my joints squeezed and pressed on, which sometimes is quiet painful and uncomfortable.

A different nurse processed me this time. She seemed new and I hadn’t seen her before on any of my prior visits. While going over my medications she struggled pronouncing the two medications Dr. L prescribed to me AzaTHIOprine (Imuran) and Hydroxychloroquine (Plaquenil). I feel if you are going to be a nurse at a Rheumatologist’s office, you should quickly learn the medications you are going to be encountering. Those two are fairly common and I know Dr. L prescribes them frequently, as he told me they are two that he relies on a lot. Other than that minor detail, I liked her a lot. She was personable, considerate, and listened to what I said. She also made notes of everything I said and not just parts of what I had to say for Dr. L. After she was finished with her part of the appointment she stepped out.

After a short wait Dr. L came in and we went over how the last 3 months had been. He asked if I had gotten my flu shot yet, and I told him yes and provided him with the date. We talked about my last flare, triggers, and what I was doing to keep my symptoms at bay. He was pleased to hear that things were improving and we both agreed that there wasn’t a need to add any new medications or to increase the dosage of either medication. Which with Imuran, we really can’t because of how I tested as a metabolizer of it back before we started me on that medication. I’m pretty much at my high dose already. It was a short appointment and he sent me to the lab for some routine tests to make sure my body was tolerating Imuran properly still.

Before going I asked him about Antiphospholipid Antibodies and their significance. The first time I tested positive for APS I tested positive for Anticardiolipin Antibodies, the second test  I tested negative for Anticardiolipin antibodies but positive for antibodies against Beta 2 Glycoprotein. I wanted to know if that meant my clotting risk was lower, which was what my Hematologist has indicated. Dr. L told me that wasn’t the case, that B2Gl was a subset of Anticardiolipin and both were antibodies against phospholipids which put me at an increased risk for blood clots. I relayed that information to Dr. C, my PCP the next day at my routine INR check.

Thursday I received an email from Dr. L and it was one of the best emails I have received in a while. Not only is my body tolerating Imuran perfectly fine, my kidney function has returned to normal! For the first time in over a year my kidneys are functioning 100% normal! Thank goodness! I can only assume that the combination of Plaquenil and Imuran are doing the trick at keeping my immune system from attacking them or whatever was going on that had my creatinine elevated for several months.

I see Dr. L again in January, a few days after my 31st birthday. I’ll have a new list of questions for him by then I’m sure. For now though I’m just really happy with where things are with my treatment.

Markers of Time



According to my TimeHop app, that was my status a year ago. Pardon the few grammatical and spelling errors. October, 11, 2013. That date, I’ll never really forget it really. It’s a day I play over and over in my head frequently. It was a very stressful day. The amount of emotions that I was experiencing, I don’t think I can begin to quantitate.  That day I had started the day by calling the office that has become my office that oversees my eye care to inquire about prices. After speaking with the lady for a few minutes she informed me I was having symptoms that needed to be seen that day, and that it couldn’t wait. She was concerned I had a Detached Retina. While I knew there was something wrong with my eye, I knew that wasn’t the answer. She scheduled me a late afternoon appointment with the man I affectionately refer to as Dr. B. He is a Retinal Specialists. He is said to be one of the best in our area. Honestly, he is the man you want to see if you need a Retinal Specialist.

I remember sitting in the waiting room scared to death. I had never been to an office like this. Prior to all this craziness my vision was perfect. I never needed to get vision tests other than the ones I needed in school. I was a little overwhelmed at the whole process as they ushered me through the process. In one room, into one exam chair to do the vision acuity test, dilating drops, fill out my medical history information. Then back to the waiting room. It was the end of the day almost so there weren’t that many people left. Then in to the room with the retina scanner. After I had fully dilated I was escorted to another room with an exam chair. An older,  tall and lanky doctor strolled in and introduced himself after a short wait. He took a quick look into my eyes, and then informed me that I had a clot in my right eye. Essentially I had a stroke in my right eye, you can read more about this appointment in the post called : It’s like a Stroke In Your Eye and It’s like a Stroke In Your Eye Pt. 2

I remember the crazy emotions that coursed through me as I listened to him talk. Honestly, one of the strongest emotions I felt that day was relief. This was the first answer I had to what was going on with all the bizarre symptoms I had started experiencing after my miscarriage. Because of this appointment with Dr. B, I was able to convince my PCP at the time to start me on Warfarin. Later on due to Dr. B being my doctor I was starting on Plaquenil at his insistence prior to being diagnosed with Lupus. I also contribute finding my Hematologist to him and one of his colleagues. My Hematologist handed me off to my Rheumatologist. My amazing healthcare team is, what is, largely because of Dr. B.  I had no idea how things were going to transpire a year ago. All I knew was this doctor was able to tell me what was wrong, and gave the most likely reason to why it had happened.

At the age of 29, you don’t expect to hear you have a blood clot lodged somewhere. Especially not in your eye, that’s something that is seen much more commonly in older patients. In someone my age, it was more likely to be seen in patients with Lupus and Antiphospholipid Syndrome. Looking back, I’ve come along ways since that post. I’m no longer pleading with people to listen to me and to take me seriously when I tell them something is wrong with me. The people who matter, listen and take me seriously.

At the age of 30, I’m still learning a lot about my conditions, the medications I’m on. My anxiety level is a lot less than it was a year ago. I know part of that is because I have taken the time to educate myself. I have made connections through support groups with others that are going through similar things.

Last year I couldn’t think ahead more than a few days without getting overwhelmed at the thought and crying. Now I’m excited to see where my frame of mind is this time next year, when that status rolls around on the 2-years ago list.

Oh and incase anyone is curious, even with the damned blind-spot in my right eye (that looks sort of like a shark shaped blob when I close my left eye)….my vision is still 20/20 in both eyes!

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!

And We Are In Range Again!

This weekend, I avoided going out in the sun, took my meds, took it easy, at least somewhat, I’m never good at the taking it easy part. I took 30 mg of Prednisone From Friday until today. I started feeling a little better yesterday, and somewhat better today. I decided to take my 30 mg dose this morning, then I went and checked in with Dr. C. Thankfully this appointment showed improvements. My INR is back in range, it’s 3.5. That means I can resume my normal dosing schedule of Warfarin for the rest of this week, unless I start getting ‘the bad’ headaches. Some warning signs of low INR for me is really bad headaches, silent migraines, and splinter hemorrhages under my fingernails. Those things all show me I need to go to the doctor and get my INR checked, even if I’m not due for a check.

I was so happy to see 3.5 on the INR test machine this morning. I’m pretty sure I would have cried if it had still been low. Cindy wrote down my INR, made notes in my chart on the computer as we chatted and then she left the room. Dr. C came in a little while later and was happy to see my INR had returned to range. We discussed if I was comfortable returning to my regular dosing schedule and I said I was. He then asked if I was feeling better, and I told him a good bit but still not completely. He said he wanted me to stay on Prednisone a couple of days longer so-called me in another prescription for them. He said it would hopefully knock this flare the rest of the way out. He asked when I wanted to come back and get my INR checked and I said in a week since I was on Prednisone, and that med is known to cause spikes in INRs. He the told me that either Friday or Monday would be okay and that Cindy would come back and schedule that appointment with me since the majority of my INR checks will be through her with him calling me later in the day, unless there’s a drastic out of range reading like we were getting last week. I told him how much I appreciated him stepping in Friday when the reading came back so low, and he said not a problem and that the appointment went exactly how he was hoping the set up would work. He’s hoping if the majority of my INR readings are with his nurse we can keep my insurance company from getting fussy later on down the line. He will still want to see me once a month to check in. He then explained that if I ever need to talk to him or if anything happens like it did on Friday then Cindy will come get him and He will either step in at that time or I can wait in the waiting room until he can see me. At least there is a concrete plan of action. That makes me feel more at ease.

Now let’s hoping a day or two longer and I can be done with Prednisone. It causes my usually stable with treatment BP to shoot up. This morning it was something like 144/92 and my pulse was 111. That’s with taking my daily dose of Lisinopril. So needless to say I can only do short treatments with Prednisone. Besides, it causes too many other issues if you stay on it long-term. Wonder drug that it is, it still does some pretty nasty things to a person’s body over time.

When Cindy came back to schedule we decided to do my next check on Friday because she is off next week and I would prefer to deal with her since she is most familiar with me and my issues. It gets old having to explain everything to new nurses, and doctors. So if I can continue dealing with primarily her and Dr. C this will cut down on my stress level as well. So I’ll head back to see her at 9am Friday to see if my INR is still behaving.

Coming up this week in the list of appointments:

  • Tomorrow: Therapy….It’s going to be an interesting appointment. This is the first session I’ve had with her during a flare. Will be interesting to see how discussions go when we have an actual flare to discuss instead of the anticipation of one, or the aftereffects of one to discuss.
  • Thursday: Ophthalmology appointment. Dr. B 6 month Follow up, plus a check to make sure Plaquenil isn’t building up in my Retinas.
  • Friday: INR Check with Cindy.

Full week ahead still plus….all of the other life stuff that I need to accomplish. Yep folks, it’s going to be another busy one!

It’s like a Stroke In Your Eye Pt. 2

For as long as I can remember I have always received the best compliments on my eyes. So you can imagine my sadness when my diseases started attacking my eyes. I knew that they wouldn’t change their appearances, at least permanently. Short term, there were a few periods of time after some transient blood clots that I dealt with ruptured blood vessels that left my eyes bloodshot and dingy looking for a few weeks. I am sure I thought this was more noticeable than other people did. We always tend to focus on the negatives when they are happening to us, especially when they are terrifying.

I didn’t realize how important blood flow was to vision. I mean it makes sense that it would be, but it wasn’t until I developed ‘thick blood’ that I realized just how important. Back before I saw Dr. B for the first time, I was having all sorts of visual disturbances, including the blind spot that had developed. I felt like I was in a fun house of visual effects. My vision was distorted, I couldn’t focus properly, and was blurry from time to time. I know now that this was likely because of the thickness of my blood and because of tiny clots passing through the veins.

I still think back to that first appointment with Dr. B often. Those words ‘You’ve had a stroke in your eye.’ often play through my mind. At the age of 29, the words ‘you’ve had a stroke’ are far from what you expect to hear, and ‘in your eye’ are even more distant. I went from having not seen an eye doctor since my school days, because I have always had perfect vision, to now I see a Retinal Specialist routinely. My appointments are long, I’m at his office for about 2 1/2 hours every time I go to his office. They do the vision field test, dilate my eyes, and prior to me even getting to see the doctor do a retinal image scan, take pictures of my eyes and then I get to see Dr. B. This next time I get to see him, he will have to do an extra step because I’m on Plaquenil and it requires monitoring for retinal damage. It can be done at the same time he is checking on the status of my Occlusion and making sure there has been no new events that have gone unnoticed to me.

That’s the scary thing, Retinal Vein Occlusions can happen without you being aware of them. Not all of them affect your vision as severely as the one I had. Some of them go unnoticed until detected by a doctor. That still unnerves me when I think about it. So I try not to think about it too much.

I haven’t seen Dr. B since January and I’m sort of looking forward to seeing him next week. It will be nice to talk to him and fill him in on everything that has happened since the last time I saw him. It’s quite a bit. I changed PCPs, acquired a Rheumatologist, was diagnosed with Lupus, started Imuran, my Plaquenil dosage was adjusted, my INR range was increased to 3-4. There were some other changes as well. Most of all, my anxiety level has significantly decreased. I also want to tell him thank you. He has been there almost from the beginning of this craziness. He is the ‘senior’ member of my medical team. If all goes well next Thursday  I probably won’t see him again until December. Since I’m on Plaquenil I should get checks every 6 months to make sure that medication isn’t causing damage to my Retinas. I still find it odd that I’m on medications that have to be monitored, and that could cause me harm, that I’m at a point in my life where the risk of the complications of the medications is outweighed by the benefits gained by taking them. It happens when you develop a couple of pesky autoimmune conditions though.



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.