Positive Thought Patterns change your health

As 2016 nears an end, I am watching the highlights of Late Night with Stephen Colbert, and the post-election episode is the first thing that came on.  It quickly spun me into a whirlwind of emotions that broke me back to November 9th.

It is easy to focus on the negative about 2016 and the fear going into 2017 considering the recent cabinet picks of our President-elect.  However, I have learned about Negative Thought Patterns in Cognitive Behavioral Therapy, and it is important that we think about the positive things and focus on the good so as not to let Trump trump our personal joys.  I’m personally very talented at thinking patterns known as catastrophizing and disqualifying the positive, and there are a number of people in my life who ‘Should all over themselves and me,’ as my therapist would say.  I spent the first two weeks of my CBT writing down all of my negative thoughts and categorizing them.  It was truly eye-opening.  I am so hard on myself and really good and thinking and expecting the worst.  Our thoughts are powerful tools, though.  The Bible counsels us in many places, including my favorite verse, Phillipians, 4:8, to think on good, pure things.  In fact, studies have shown that thinking positively and with a mindset of gratefulness as part of our emotional hygiene, a concept I really dig, can improve our overall health.

Thus, I am creating a list of things that have made me truly happy and for which I am extremely thankful this year:

  1. My POTS was finally diagnosed and is fairly under control after 3 years of suffering.
  2. I have access to incredible health care working at Duke.
  3. I am surrounded by colleagues who are intelligent, intellectually engaged, supportive, and motivated.
  4. I teach incredibly motivated and intelligent students who demonstrate a genuine interest in the world and in learning about it.
  5. I have finished law school and passed the bar!
  6. I am able to afford good food that is healthy and satisfying.
  7. I have been able to see my friends and family much more frequently this year.  They bring me great joy.
  8. I attend a sweet church with wonderful people who have cared for me when I most needed it.
  9. I am able to explore interests outside of work and school that give me a creative outlet.
  10. I get to work collaboratively with a number of non-profits to work alongside all kinds of different people.
  11. I have cultivated a lasting relationship with my significant other that brings us both fulfillment.
  12. I have traveled to various cities this year and even lived in Miami for 5 weeks by myself this year.
  13. I have consistently overcome fears this year that have limited my happiness in life.
  14. I am learning to be content with myself and where I am.
  15. I have said “No” to things that I could not or should not do.  I have followed my insticts.
  16. I can engage in activities that I enjoy that make me healthier like running, doing HIIT, and anything on FitnessBlender *they are amazing, and if you haven’t tried them, you should!
  17. I have seen people come together post-election despite the crushing fear, grief, and hurt that they feel.
  18. I am blessed beyond measure.
  19. I am learning to love my body in all its shapes, sizes, and forms.  It is a wonderous creation.

After starting this list, I realized that I could really go on and on.   feel more empowered, positive, uplifted, capable.  I challenge you to make your own list and share it with me or keep it to yourself.  Just writing it down, though, has helped me realize just how much positivity and good I have in my life.

I send this with thoughts of peace and prosperity for you in the new year.


My monster has a name…

So, it’s been over a year since I last posted.  There are a number of reasons for that.  First, things got much worse, then things got much better.  Today has been the apex of years of emotions and symptoms related to Lupus that have kept me on a rollercoaster in life.

First, let me tell you what had happened before this momentous day.  For almost three years now, I have been experiencing unexplained light headedness, headache, dizziness, weakness in the knees, fatigue, and general malaise.  I had even passed out on a couple of occasions.  I have seen a physical therapist, a dermatologist, a endocrinologist, two cardiologists, my rheumatologist, a chiropractor, and a number of other health care professionals to try to find out what was going on.  They almost categorically dismissed my symptoms and told me, sometimes in more or less direct ways, to just ‘deal with it’ or ‘get over it.’  Thinking I was losing my mind and suffering terribly from depression and anxiety over these unexplained episodes, I went promptly (well, as promptly as Duke medical’s wait list would allow me) to a psychiatrist to figure out if I was, in fact, crazy.  Thankfully, both the psychiatrist and the psychologist who she recommended me to for Cognitive Behavioral Therapy, reassured me that although I was anxious and depressed, it was being caused by the physiological symptoms that I was experiencing for a prolonged period of time.  So, things were really bad, but also getting better because I was being treated for my depression and anxiety with therapy sessions that taught me to not let my physiological symptoms render me paralyzed by fear.  This therapy has been a god-send, but I am sad to admit that I was afraid to share that I was seeing a therapist as our society still has not accepted mental illness as an illness just like any other.  Mental illness as simple as anxiety and depression are still stigmatized in our society, and very misunderstood.  However, one thing that I have learned from this experience is that when I open up about my challenges with anxiety and depression, others have opened up to me and shared their own similar experiences–apparently the reportedly rising rates of anxiety and depression in our country are not a fluke.  It seems many are suffering from symptoms of anxiety and depression.  So, first, let me tell you, I was low because I still felt crummy for quite a while, but I was improving greatly with dealing with my symptoms thanks to therapy.

However, nearly a year after beginning therapy, I still was having symptoms of lightheadedness, blurry vision, difficultly breathing, fatigue, etc.  The same symptoms that so many doctors had dismissed.  However, my  wonderful rheumatologist referred me to the Syncope clinic.  I have learned through this process that “syncope” is the medical term for passing out.  When I first met with the cardiologist at the clinic, she was amazing, she listened to me, took some readings, and decided that I *MIGHT* have POTS (Postural Orthostatic Tacychardia Syndrome), a condition characterized by an increase in pulse of 30 beats per minute without much rise in blood pressure within 10 minutes of standing that can cause these symptoms I was experiencing.  She recommended I increase my salt intake, maintain my exercise regimen, and increase my fluids.  I was set to return in a month for a tilt table test which would help her make the final diagnosis.  So, for the past few months, I have been putting salt tabs in my water, drinking gatorade, eating more salty foods, maintaining my exercise, and drinking much more.

So, flash-forward to today, the day of my fated tilt-table test.  After three years of searching, I have to admit I was not very hopeful that this test would show many results since up to this point, nothing had helped me get a diagnosis.  I arrived at the hospital at 9:00 a.m., checked in, and was led to a room to change into those lovely hospital gowns and grip socks they give you.  Two nurses entered and started an IV, took some blood, asked me a ton of questions, and unsuccessfully got an oxygen reading on me, due to my Raynaud’s disease preventing enough circulation for the finger monitor to pick up anything.  After waiting around an hour or so, another nurse, and assistant, and the cardiologist, Dr. Frazier-Mills, came in, had me sign a release form, and I was wheeled into the procedure room, which I promptly told the crew was the scariest room I had ever seen–there were machines and monitors EVERYWHERE.  By this time, I had been reclined for about two hours, and was feeling kind of nervous.  The nurse, Amy, and her assistant were trying to get me hooked up to the EKG, keep my IV working, and use a finger cuff to monitor internal blood pressure during the test.  Of course, because of my fun Raynaud’s, the finger cuff was unsuccessful, but the nurses and doctors had really tried to get a reading, bringing me heat packs, and about 9 heated blankets (this is not an exaggeration).  Unfortunately, when the finger cuff failed, they had to page the anesthesiologist on call to insert a catheter into my wrist.  If you don’t know, a catheter is similar to an IV but is inserted into an artery instead of a vein.  The insertion requires first a numbing shot of local anesthesia followed by insertion of the cath.  Unfortunately, lucky me again, my cath wouldn’t enter on the first time and I was in a great deal of pain for a bit when the anesthesiologist was pushing into onto a nerve that hadn’t been hit with the numbing meds yet.  So, he called in his nurse, they took an ultrasound of my wrist, inserted more numbing meds and successfully inserted the catheter.  If you have never experienced this before, I would liken it to feeling like Katniss in the Hunger Games when she’s inserted with her tracking device.  Not terribly painful, but not a lot of fun either.  Then, there was another hiccup when the tubing connecting the catheter to the blood pressure machine was causing a false spike before each heartbeat on my echocardiogram.  The doctor finally decided that it was the best they could do, and she would subtract out that extra spike from all the data.  Finally, once everything was hooked up, they were ready to start the test.

The test involves strapping you onto a reclined bed with straps across your lower and upper legs and torso and your feet planted on a flat board at the foot of the bed and then elevating you to a 70 degree tilt up, so that you’re almost vertical.  Let me tell you, it doesn’t feel “almost vertical”–it feels like you’re standing erect.  While you’re in the tile position, they ask you to describe your symptoms and rate them in severity from 1-10.  Things were going OK.  I was sweating a lot, my legs felt like lead weights, I was shaky and flushed and weak in the knees, but none of my symptoms climbed over a 4 in the first 10 minutes.  However, my heart rate steadily inclined as my blood pressure remained the same, and I hit the magic POTS diagnosis number just before the 10 minutes were up.  The doctor was talking to me, about POTS and telling me that the first part of the test was over but that the second part would probably involve other techniques to provoke stress and see if she could make me pass out.  By the way, the goal of the tilt table test is basically to get you to pass out–I mean really they’re looking for certain cardiac behaviors and responses, but those responses typically make you pass out.  Since I was still not above a 4, the nurse took a blood sample from my catheter.  While she was finishing, I suddenly got feeling really sick.  I was nauseated, sweating buckets, and felt like I was going to pass out.  My hands went numb, my lips went numb, my vision came in and out, and I couldn’t breath.  I was half crying-half moaning, which is embarrassing to admit now, but apparently that’s what I do when I’m about to pass out.  I was pleading with the doctors to lay me back down, but they needed me to pass out, so I just gave in.  As I was losing consciousness, the doctor and nurse came up beside me, and tried to get me to breath deeply while holding my chest.  I finally recovered a bit to speak and asked would the doctor lay me back down.  This time, she obliged, and I was thinking that I had failed the test by asking to be reclined.  Meanwhile, the doctor and nurses are bustling around me checking things and getting a cold washcloth.  A few minutes later, I ask the doctor sheepishly how many more times I have to do the test.  I thought since I had asked to lay down that I would be forced to try again, this time with other tortures alluded to like putting my hand in cold water or injecting me with nitroglycerin to provoke a stress response, so I was preparing myself for another round or two of the misery I had just experienced.  Instead the doctor just laughed, and said that we didn’t have to do it again because I had reacted “organically” and that my blood pressure had dropped from 134/80 to 74/58 and then to 54/38 and then had recovered slowly after the episode was over.  I was so relieved to not have to do the test again that I didn’t even care that my catheter was killing me and I was laying on my IV cord that was twisted up behind me as I moved back onto the transport bed.  The doctor disappeared for a few more minutes while the nurses unhooked me from everything, drew more blood, and prepared me for recovery.  When the doctor came back in she said the blood samples were to help rule out certain causes of POTS, but that I definitely had POTS, demonstrated by my symptoms and readings in the first 10 minutes of the test, and that she believes I have Neurocardiogenic Syncope, which was the episode of blacking out I experienced when my blood pressure dropped suddenly  and then slowly recovered on its own at about minute 15 of the test.  After doing some preliminary research, it appears that Neurocardiogenic Syncope is caused by blood pooling in the legs upon standing and may be caused my strange bracychardia during this occurrence.  I still don’t know much about the condition.  Treatment for now involves abandoning the med that improves my symptoms of Raynaud’s, the amlodipine, increasing my salt and fluids intake and continuing with exercise, fidgeting constantly while sitting or standing to maintain blood flow to the extremities, and wearing extremely tight but sheer thigh-high compression socks that will help to improve the pooling of blood in my legs.  If these things do not improve my conditions, further treatments include first, second, and third round medicines, and in some cases, pace makers.

After my test, I was wheeled back to a recovery room where I was given IV fluids for 2 hours and then wheeled out to the parking lot to be driven home.  I left the hospital around 2:30 p.m..  I had arrived at 9:00 a.m. and the entire test with recovery and all was predicted to last 1-2.5 hours.  Mine was 5 hours.  However, I do not mind.  I am SO THANKFUL that my condition finally has a name and I finally have a diagnosis.  This monster that has been plaugeing me for three years finally has a name: POTS with Neurocardiogenic Syncope.  It might not seem significant but it is for two reasons.  First, you can’t treat a problem until you know what it is–I now know what it is.  Second, the unknown causes fear, but when you can name what you’re feeling and label what’s causing you symptoms, it’s not so scary anymore.  In fact, it seems completely manageable now.  Questions still remain: What causes these conditions?  Why do I have these conditions?  Are they related to my Lupus–I suspect they may be since autoimmune conditions can cause POTS, although I haven’t found a ton of research about it.  Will the treatments be successful?  What are the possible side-effects of other medications?  Will I really have to wear those compression hose for the REST OF MY LIFE–ugh!?  Despite all these questions, I am content for now to know that my monster has a name, and that it can be treated.  In the mean time, I’m resting as it takes most people a couple of days to recover.  I can still tell, writing this post, that my brain is still a bit scattered and my body still a bit shaky, but it is worth it to know that I am NOT crazy, that this is NOT psychosomatic, and that someone finally heard what I was saying and was able to identify my condition.




If you want to read more about my condition and its treatments, see the article I found below:  http://www.dynainc.org/docs/ncs-pots-combined.pdf


Patient advocates

Hey y’all…I have not blogged for a long time.  My health has been poor and I have been so overwhelmed with work and my symptoms that I haven’t had much time to write up what’s been going on.  However, today I had a break through, and so this post is all about the importance of patient advocacy.

Since March of last year, I have had vision changes on and off, that I originally thought was ‘dizziness’ but I have found recently that the symptoms are really a change in vision that is not a vertigo spinning or a lightheadedness.  These symptoms also are often frequently accompanied by difficulty with balance/motor coordination which I think is partially caused by the vision symptoms.  I also find that when I have these vision changes I also suffer from extreme fatigue, and often anxiety.  Basically, I often see double and have to close one eye because my eyes are so tired.  I am very sensitive to lots of sunlight but am unable to see well in dim situations and at night  as well.  I have seen all sorts of doctors to try to narrow down the causes of these symptoms, originally describing what I was feeling as ‘dizziness’.   We determined it wasn’t a brain tumor, a heart malfunction, diabetes or an endocrine problem, but symptoms persisted.  I have realized that these symptoms aren’t dizziness but are more like disorientation caused by the changes in my vision–that realization has helped me cope a lot with the anxiety that the symptoms cause.  However, these symptoms have really interfered with my life in the past few weeks.  Since the symptoms began in March, I will have periods of weeks/months that are characterized by  these symptoms and then periods of remission.  My symptoms had improved since November but in early February my vision got really bad–worse than it had ever been.

Luckily, I saw my Rheumatologist a couple of weeks ago, and she really went to bat for me as she always does.  After talking through my symptoms with me and doing a vision test (the follow-my-finger test) and learning that my vision keeps changing (the axis of my astigmatism keeps rotating–something that should not happen and apparently rarely happens), she recommended me to Neuro-opthalmology to see if there was any involvement of my optic nerve that is affecting my vision.

Here comes the important piece.  Three Fridays ago, no one at neuro-opthalmology would answer the phone because the doctor was in clinic when my Rheumatologist tried to schedule an appointment, so she put in a referral.  Unfortunately, the Duke eye center scheduled me with just a regular Ophthalmologist (I’ve already seen the Ophthalmologist 3 times and an Optometrist once since my  symptoms started and all they could tell me was my vision was changing and they could tell I couldn’t recover from looking far away and close up quickly).  I called the Eye Center again and the told me they needed a referral from my doctor.  (Don’t worry, you’re not losing it–I did just write that my doctor had sent in a referral.  You all picked up on that, but they Duke Eye Center did not).  I had my Rheumatologist re-send the referral, hesitant to bother them again.  The Duke eye center scheduled me AGAIN with a regular ophthalmologist.  I called again–this time, finally, they promised to get my appointment with the neuro-ophthalmologist.  Only problem was, Duke Neuro-ophthalmology could not see me until June 15th.  That’s right, four months after the start of this round of symptoms.

Now, I’m typically not so pushy with doctors and get embarrassed about calling in and requesting things unless it’s absolutely essential.  However, in this case, I was having break downs almost every night, which were a mix of relief that I had survived another day with these symptoms and dread that I had to wake up and do it all over again the next day…it is terrifying losing the clarity of your vision and your general ability to function and still having to carry on your work and school like a ‘normal’ person.  I had even cried before one of my classes in the hall at work.  (I’m working on dealing with these emotions that are actually quite common for Lupus patients but which I had not really struggled with until recently).  I was miserable enough that I decided to call the Neuro-ophthalmologist and advocate for myself.  She told me that I would be put on a cancellation wait list but there was nothing more she could do unless my doctors sent over a letter requesting I be seen sooner.  I was already uncomfortable being a little pushy with one doctor and I really felt like I had already overstepped  my requests with the Rheumatologist, having had to call and request the original referral again.  But, I decided that if no one else was going to advocate for me, I would not be getting any further to a diagnosis anytime soon.  So, I called my Rheumatologist and requested they send a letter over to have me seen soon.

In the mean time, one of my fellow church members also knows the head of neuro-ophth and also put a call in to request an appointment.

Weeks went by, and the Rheumatologist had me set up with another Ophthalmologist in the mean time to make sure I was seen by someone soon while waiting for my appointment for Neuro-ophthalmalogy.  I had sort of given up on the possibility that I would be seen before June and was waiting for my appointment with the regular Ophthalmologist in April (yes, they had a couple of weeks wait time too).

Suddenly, this morning, I got a call from the Duke Eye Center.  The secretary told me that the head of Neuro-Op had received several calls requesting that I be seen immediately.  I now have an appointment in 6 days with him.  Much better than June 15th!  The point is that if I had just sat back after my appointment was messed up the first time, or the second time, or even the third time, if I had been too shy or embarrassed to push for an earlier appointment, and if my doctors and friends had been equally shy, I would be going the next few months without an appointment.  I usually roll my eyes when people talk about patient advocacy, thinking that our system is typically fair and patients shouldn’t need advocates since our health-care providers have our best interest at heart.  The reality is that even if the system is generally fair and people are looking out for you, no one really knows how you feel or what is going on with you, and it’s up to you to pursue health care if you feel like it is necessary.  So, don’t be afraid to call, request an appointment, and push back when you feel instinctively that something is wrong.  In my case, it will get me that much closer to figuring out what is causing these terrible vision changes.

Thank y’all for reading.  I’ll update with the results of my appointment on Tuesday, and maybe my next post will be on clothing that works for Lupus (I’ve found a couple of tricks over the years).

Be your biggest advocate, you’ve really got nothing to lose!

Dizziness and More medications

Welp, I am almost halfway through another semester of law school, and I just received an amazing email from a fellow student who I don’t know personally but who stumbled across my blog.  Her email touched me so deeply.  You know, I typically write this blog for me–I know that’s selfish, but sometimes blogging can help me figure out what is going on in my head and help me cope with some of the things that I tend to shove aside in my quest to make it through my days.  So, when someone tells me that they read my blog and related to it and then encourages me to keep on because I encouraged them to keep on going, well, let’s just say a couple of tears fell reading that email.  It’s especially significant knowing that you connected with someone nowadays.  Just this week I’ve heard 2 NPR stories about how technology is isolating us and keeping us from experiencing true human interaction.  While that may be true in many cases, I think we are sometimes brought together by technology in ways we never would be otherwise.  For example, I would never have the courage to share some of the stories on my blog with most people.  Even some of my closest friends and family only hear part of what I go through, so this is a way for me to open up and share a part of myself and connect with others, even those I may not interact with in “real life.”  In fact, my blog site has informed me that I’ve had readers from as far away as the UK, Colombia, Sweeden, Australia, and many others.  That is practically unfathomable for me, but awesome, awesome and awe-inspiring.  I’m writing this blog with a prayer in my heart for the woman who emailed me today.

Onward with the updates:

First of all, my dizziness has returned.  It actually feels like a cross between feeling out of balance and an inability to focus my eyes, almost like when you first wake up from a dream, and your brain is foggy as well as your vision, except that it never recovers during the day.  This has been going on  for over a year, but my  symptoms had improved briefly over the past few months.  Unfortunately, this past week has been terrible.  It’s a horrible sensation to feel like you could pass out at any moment.  What’s even more disconcerting is knowing that you’ve been checked for every possible medical cause, and there’s no diagnosis.  I’ve seen neurologists, cardiologists, endocrinologists, my rheumatologist, physical therapists, 3 ENTs and a whole slew of other doctors who have told me that medically there is nothing they can diagnose me of.  The only thing that I can think of that correlates with my symptoms is terrible neck pain and overwork/stress, but that’s sort of a norm in my life, so when the doctors ask me if I have any stress in my life that could be causing my symptoms, I just have to laugh and quietly think to myself, well, Who doesn’t?  Anyway, just pray that these symptoms improve like they have in the past–otherwise, it’s going to be a very rough rest of the semester.

Now, talking about medications part 3.

Today’s nominees (in honor of the Oscars which are playing in the background as I type) are:

Omeprazole and Evoxac.

Omeprazole, also known as Prilosec, is actually a common drug that is sold over the counter, but I’m on a prescription dose.  When I eat tomatoes, potatoes, anything spicy, or anything acidic like chocolate, coffee, etc., I have terrible heart burn.  It’s so bad that I feel like my throat is burning.  Unfortunately, this is a result of the Lupus, and is also a common symptom of people with Sjorgen’s disease.  What should you know about this medication if you’re considering taking it?  First, unbeknownst to me for the first few years taking the drug, it is not very effective when taken sporadically or only when symptoms arise.  It is effective when taken regularly (i.e. daily), a half hour before eating.  I find that my heartburn is the worst, however, not after eating, but when I lay down to sleep.  Thus, I typically take the medicine before going to bed, otherwise, I wake up at 2:00 a.m. with burning in my chest.  Side effects so far have been minimal for me, but my ENT strongly encouraged me to avoid taking the drug, saying that he had read some studies saying that long-term use could cause joint problems.  I have not seen this literature, but it certainly added to my anxiety about the number of medications I take.  Unfortunately, however, these drugs are always a toss up since the result of enduring heartburn long-term could be a wearing away of the esophagus which puts you at risk for having stomach acid seep into your lungs, which can create an emergency situation.  So, for now, I’m accepting the side-effects over the regular symptoms.

Our other nominee, and winner for worst drug of all that I take is Evoxac.  It is so bad, I quit taking it (against my doctor’s advice) because I could not endure the side effects.  This drug was prescribed to me to increase my saliva production and help with some of the tongue burning/pain problems I’ve been enduring (which are continuing in case you were wondering, but not nearly as severely).  People with Sjorgen’s have dryness generally in their bodies, and this drug is supposed to improve saliva production which is actually terribly important to avoid cavities and keep your mouth healthy.  Unfortunately, the lovely side-effect of this drug is increased sweating.  Let me tell you, it is no small thing.  The sweating was so intense that for weeks, I was sweating through my clothes multiple times a day just going through my regular routine and soaking my pajamas, the sheets, and even sweating through the comforter EVERY SINGLE NIGHT.  When you’re sweating enough to soak a layer of thick material, full of down stuffing, something has to be done.  I already have an issue with hyper-hydrosis which is exacerbated by my social anxiety which means I already sweat profusely on a regular basis.  Adding to that natural propensity created an unbearable situation for me with this drug.  Needless to say, this drug is out of rotation for me.  I will talk to my rheumatologist about it in my visit in a few weeks, but until then, I cannot deal with the sweating.  If you are able to tolerate this drug, you deserve some sort of Darwinian award for being the strongest link in our human chain, but I for one have succumbed to the side effects and retired this drug.

Those are the main prescription drugs I take for my lupus, but I also take a number of supplements (an unnecessary euphemism for vitamins–why is it that people prefer supplements over vitamins anyway?  I guess some supplements are not considered ‘vitamins’, but I digress…) that I have been convinced into taking–I’m not sure I notice a huge difference with them, and I’ve read a lot of literature about how the vitamin trend is all hype, but in case you’re wondering, I also take: A multivitamin (will talk later about the brand and why), fish oil, flax seed, vitamin D, and curcumin.

Here’s a look at what my morning pills look like.

morning pills

OK, time to get back to studying and lesson-planning for this week.  Truth be told: all I want to do is go to bed–I’m so exhausted and this dizziness is really messing me up!

Night night, lupies, and lupie lovers.

Medication…part deux

So, I’m a week and a half into the semester teaching and a week into my night classes, and I have been wiped out every night this week.  That schedule would make anyone tired, but when you have Lupus and fatigue is one of the primary symptoms, a tough week can really knock you down.  I got home Monday and barely had the energy to heat up some water for a Ramen noodle soup.  That’s pretty tired.  I was lucky to have a wonderful meal, which my mom had cooked the week before and brought to me to keep in the fridge, on Wednesday night when I got home around 7:15 and was too tired to do much more than turn on the oven.  Despite the exhaustion, things are going well in all areas so far, and I’m gearing up for a great semester.  I’m trying to work on staying in the moment and remembering that all we have is each moment.  That helps me with the anxiety I sometimes experience on top of all of my Lupus symptoms.

Anyway, I figured it’s time to continue the story about medications.  Today’s star is the amazing Amlodipine, or as it’s known on the street, Norvasc. (Just kidding, I’m pretty sure no one is taking this recreationally.)

Amlodipine is a tiny, chalky drug that tastes like pure sulfur and is typically prescribed to angina and heart patients as well as people with high blood pressure.  It’s a calcium-channel blocker, which causes the blood vessel walls to dilate, allowing blood to flow.  It tends to be well-tolerated by patients, so it is fairly widely prescribed, and my doctors wasted no time getting me on it.

Here’s the thing: I worry about it.  Every time I visit the Rheumatologist, I have to fill out a patient intake survey which asks me to rate on a level from 1-5 my symptoms and my ability to deal with them.  One of the questions on the survey asks how often you worry about the medications you take, with (1) being not at all and (5) being all the time.  I have a confession to make.  I always lie on the survey.  I always write that I’m almost a 1, only slightly concerned about the medications I take.  I have never admitted this to anyone because I don’t think I ever even realized it until I sat down to write this post, but I am very fearful of what long-term usage of these medications can do to me.  And the thing is, it’s not a conversation my Rheumatologist and I have ever had.  Probably because I never mention it on my sheet.  It’s just that I always have more pressing things to talk about, like the fact that I can’t go a day without getting terribly light headed and feeling like I’m going to pass out.  Dealing with the psychological effects of taking long-term medications is sort of low on my list of priorities to talk to the doctor about.   Besides, my doctors already give me LONG appointments (each time spending between 30 minutes and an hour talking and listening about my symptoms and concerns), so I feel guilty taking up even more time from other patients who are probably experiencing even worse symptoms than I am by whining about my fear of taking a lot of medications.  So, I lie, I downplay my anxiety about this.  I’m not the only one who does this.  I read a statistic recently that a large portion of Lupus patients downplay their symptoms for a number of reasons, including protecting family and friends, avoiding admitting the severity of symptoms to yourself, and avoiding being a ‘whiner’.  I am guilty of this.

of people with lupus say they downplay symptoms to avoid upsetting their families.1*  http://www.lupuscheck.com/listen-to-your-body.html

Anyway, although this particular drug is well-tolerated, there are no life-long-use studies of this drug that I have found, so the question is, having started this medication at 26, what will it do to me after 10, 20, 30, 40, possibly 50 years of use?  Amlodipine is already known to cause dry mouth, an unfortunate symptom for someone with Lupus AND Sjorgen’s who already suffers from dry mouth which is then exacerbated by this drug.  Another unfortunate symptom is increased acid indigestion, which is also a terrible symptom for someone with Sjorgen’s who already has enough acid reflux.  Lucky for me (yeah right), there are other drugs which take care of these 2 side effects (and cause another set of side effects of their own, but more on those later).  A quick search about the drug also reveals that  this drug causes skin rashes, inflammation, redness, dryness and increased sweating as well as lowered sexual function and increased anxiety and depression, especially in women.  Great. People always joke about when a drug’s side-effects are worse than the disease they treat.  If only that were the case with my frenemy, Amlodipine.  In fact, these side effects do not compare to the relief this drug provides me.

I’ve been on Amlodipine for about 3 and a half years now and haven’t noticed any major side effects, at least none that I can tell are directly related to the use of this drug.  In fact, when I went off the drug for a couple of weeks to try to figure out the cause of other symptoms I was experiencing, I found that my Raynaud’s symptoms were absolutely unbearable.  Check out this picture of my hands last winter (on Amlodipine) after spending just 10 minutes outside wearing 2 pairs of gloves and keeping my hands inside my coat pockets.  Now imagine those symptoms about 3X worse.  The bottom line is that I have adjusted to a quality of life taking this drug, and it would be hard to live with any worse circulation than what I already experience in my hands and feet.  As it is, the poor circulation in my hands and feet affects my balance and my grip which makes simple activities like walking, cooking, gripping a pencil, and squeezing a shampoo bottle terribly painful and sometimes impossible.


Basically, Amlodipine is my friend because it opens my capillaries, the tiny blood vessels at the tips of my fingers, just beneath the surface.  When I get stressed or cold, those capillaries are supposed to open up to allow more blood to flow.  Instead, my capillaries shut down, so Amlodipine helps blood circulate to the tips of my fingers and toes.  It also helps me with my blood pressure.  Despite my aversion to very salty foods and my regular exercise and fairly decent diet, I have blood pressure that ranges about 145/90 to 126/60 on a regular 5 gram dose of Amlodipine a day.  That’s high.  In fact, a lot of people who take Amlodipine get lightheaded and have to lower their dosage because it drops their blood pressure so much that they nearly pass out upon standing.  Instead, my blood pressure is often still high even on this fairly high dosage of the medication.  I’m worried that if I ever went of this drug, my blood pressure would skyrocket so high I would have a cardiac episode.  Lupus patients also tend to have a higher rate of hypertension and heart disease, so I guess this drug helps prevent a major heart problem while also improving my circulation, but I sure to worry about taking it for the rest of my existence.  That’s why it’s my frenemy.

My love/hate relationship with this drug will probably continue indefinitely because there are few drugs that do what this one does that and are so well-tolerated by nearly all who take the medicine.  In the mean time, if you have to take this drug, I highly suggest you drink a yummy juice before and after taking your pill–it loves to get stuck in your throat when you try to swallow it, and that sour taste it leaves behind when it does is not a fun way to start your day.

Next up, the meds to combat the meds: Omeprazole and Evoxac.  Happy Friday y’all.

It’s great to be normal!

Not a lot of time to blog now since the semester starts bright and early tomorrow morning and I’m still working on getting myself organized, but I just received the results of my biopsies–no amyloids on the fat pad biopsy on my stomach and biopsy of my hand was “consistent with Lupus” and should be treated with a topical cream called clobetasol (still haven’t researched it yet) and I’m to wear sunscreen like it’s going out of style.  Dermatologist is not worried about my tongue (it appears no one is except me), but the good news is that these results, combined with my blood protein analyses suggest that there is no amyloidosis.  YAYAYAY!  I still have a few follow ups to do to rule out some other things, but what great news and what a relief before the beginning of a grueling semester.  Thank you to all who have prayed, sent messages, visited, checked in, and supported me in so many unexpected and beautiful ways.  The journey continues…

¡Happy Día de los Reyes!  http://www.inside-mexico.com/featurereyes.htm
This is definitely my Epiphany gift.  🙂

Malar/Butterfly rash

As I said in a previous post, I’ve never had a lupus Malar rash, but I think I might have one now.  See my pic and google examples to compare. What do you think?  Face feels hot and flushed.  Maybe this is my body flaring like never before.


On another note, I’m getting my wisdom teeth out in the am.  Never been put to sleep, so I’m nervous, especially because they can’t monitor my oxygen levels easily because of my terrible circulation.  Pray it goes well!  Valium is kicking in so night night.