MCAS | my excipient ingredients project

It has been a painful lesson physically and emotionally to endure drug failures.  Each one I have lost more of my spirit – and undeniably more of my fight to want to keep trying new drugs.  At the beginning, my body bounced back, as did my spirit from failed experiments. Lately my body is not bouncing back.  My skin is scarred from the Gleevec, my stomach is wrecked from the Mestinon, and my spirit is damaged from the accumulation of all the recent failures.  But this post is not a pity party for one, instead it is about my project that I started back in 2016 that I want to share.

Long before I was even diagnosed with Mast Cell Activation Syndrome (MCAS), my specialist had me embark on a project to try to determine if I was allergic to the ingredients in my prescription medicines.  You see, if you go and look at the medicines you take, you will see a long list of excipient ingredients, known as fillers in layman terms.  I am still astounded by the number of “fillers” that manufacturers put in their medicines and that the FDA actually approves.  I understand that a couple of fillers are necessary to get the medicine down one’s throat but beyond that, for people with allergies, it is a very unnecessary practice.

So I put together an Excel file.  One tab covered the ingredients, I would mark them active or inactive – the fillers would always be inactive.  I had the name of the medicine on the top row and then the ingredients on the sides so I could cross reference.  The end goal would be to see if I was ingesting any unique filler ingredients – and perhaps determine if I was having an allergy to any of them.

In another tab, I would gather specific information of each medication such as when I started taking the medication, the dose, the manufacturer, when I stopped and when I resumed (may or may not be relevant), if I changed manufacturers (may or may not be relevant – this would often lead to a new column in the other tab because manufacturers have different filler ingredients).  I also included the half-life (as in how long it lasts in my system) and where I purchased the medicine.  I also created a separate tab for all of my over the counter (OTC) drugs and completed the same documentation (OTC meds are full of fillers too!).

I kept track of symptoms including when I ran experiments (e.g., last year I took a brief hiatus from my one blood thinner but stayed on the other and during that period had in increase number of migraines; while it could have been coincidental as soon as I went back on the blood thinner the number of my migraines leveled off again, essentially indicating I was in need of both blood thinners). Warning: whatever you do, do not stop taking a medicine without consulting a medical professional first! I looked for patterns. Although I didn’t see any, I did share my findings and always discussed issues with my doctors when I added new meds or stopped taking any meds. And don’t forget that your OTC meds should be incorporated into your project too, you’d be surprised as to how much “junk” they too have, including your vitamins.

So yes this is a very tedious project.  It requires finding out from your pharmacy who the manufacturer is.  Then you need to go to Daily Med (https://dailymed.nlm.nih.gov/dailymed/) to look up the ingredients.  The easiest is to type in the name of the drug in the search box and then look for the manufacturer.  (Or you can use www.drugs.com.)

Back in 2016, I realized many of the drugs used the same fillers and I suspected that I didn’t have an allergy to any.  But I sure was alarmed by the sheer number of fillers in each medicine.  I did drop a few drugs from my list at the time as an experiment (all of this was done in collaboration with my specialist).  I didn’t notice anything so I thought I was in the clear with the fillers.  While this project didn’t specifically help my body, I did find it enlightening.  (Note: patients with MCAS can have allergies to dyes, alcohols, and talc, which are often used as fillers in both RX and OTC drugs.)

But fast forward to November 2017. I had stopped looking up excipient ingredients for almost a year.  I added a drug to my daily regime in February 2017 and never thought to look up the ingredients.  It was a white pill, which I thought was especially innocuous.  With having just been diagnosed with MCAS, dyes and other filler ingredients are known triggers for some patients.  So I reopened this project.  I was alarmed to see that this “white” pill had a BLUE dye as one of its filler ingredients.  Unfortunately through this process I did learn that Medicare would NOT cover compounding. Compounding is the art and science of preparing personalized medications for patients. Compounded medications are made based on a specific prescription, in which individual ingredients are mixed together in the exact strength and dosage required for the patient so it can easily exclude allergens.

Compounding is also very expensive.  I also learned that some pharmacies are NOT legit compounders. Compounding of medicines does NOT mean repurposing generics into powder.  So be aware when you are looking into compounding options.  Compounding should literally be the active ingredient and a safe filler or two.  After a lot of searching in the case of this medicine I was able to find an alternative manufacture that used fillers that did not include blue dye.  I am not sure if my body is liking the alternative or not yet as it has been in a tizzy for months.

Perhaps if/when I have more energy I will launch a project into why the FDA allows manufacturers leeway into using so many fillers.  You don’t need dye to distinguish between pills, they are already marked with numbers and vary in size.  Pills also don’t need to taste good, they just need to go down.  If compounding can accomplish that, then why can’t the manufacturers.  Let’s save money (and potential allergic reactions) by using less.  Again, pharmaceuticals shouldn’t be a for profit business, they should exist for saving patient lives. While this project didn’t reveal an allergy for me, it was interesting and enlightening albeit frustrating. But it could help you figure out one so don’t let me hold you back and I am happy to help answer any questions you may have with your excipient ingredient endeavor should you choose to embark on one. I will admit that all my meds are dye free (and I specifically look for manufacturers that have the least amount of fillers and no dyes, especially now that I know I have MCAS). #sickbutstillsassy

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some sweet super bowl awareness?!

I’m really not sure how it’s February already.  I normally welcome the Super Bowl with open arms.  This year, I watched it with half closed eyes as my fatigue was off the charts and I struggled to keep my eyes open.  I was particularly interested in whether the commentators would mention anything about Tori Moore, the wife of the Eagles quarterback, Nick Foles.  She has Postural Orthostatic Tachycardia Syndrome (POTS).  I thought with the millions of viewers it would be prime to elevate this health condition and bring us some much needed attention.  But alas, I never once heard it mentioned.  Maybe I missed it?  Maybe they did a piece on it before the Super Bowl?  Maybe they’ll do one after the Super Bowl now that the Eagles won?  There were a few publications like Bustle and Elite Daily that mentioned it in articles prior to the Super Bowl but I didn’t see it in Sports Illustrated or ESPN (again unless I missed it).

Tori was a former athlete and worked at Nike.  Maybe she didn’t want any hoopla.  But with the Super Bowl behind us now, I hope she’d want some hoopla.  There is still so much awareness needed for POTS.  I know I am a private person, but I have sort of forsaken that for spreading awareness and trying to be a source of information and inspiration for others. I was a former athlete, a former professional, a former traveler, a former volunteer, and gosh put former in front of so much.  I don’t do a lot now since my medical journey and all of my diagnoses have stripped me of my former life.  But I have realized with the little energy I have it is important to share my journey in the hopes it can help at least one person, inspire one person, make one person laugh, make one person feel less lonely, and shed light on the struggles we face with these lesser known chronic illnesses that the general public aren’t aware of and that are also under-recognized within the medical community.

Anyway, the Super Bowl marked the end of another NFL season. I finished tenth in my pool as #beardown.  My Chicago Bears didn’t totally embarrass me; we had a few good wins and saw some stars emerge.  I look forward to next season with a new coach and seeing the potential of Trubisky, Cohen, Howard, and the other young players gelling to be a force to be reckoned with.  I was proud to see Brian Urlacher voted into the Hall of Fame this past week and see JJ Watt receive the Walter Payton award for his selflessness in raising over $30 million for Hurricane Harvey relief efforts.  Former Chicago Bear Walter Payton aka sweetness, was amazing both on and off the field. So for the past 16 years being in my pick pool, my pick pool name is usually tied to sweetness to honor Payton’s legacy of giving back or as an ode to the Chicago Bears. Payton, McMahon, Singletary, Dent, Perry, and the rest of the guys of the 1985 Chicago Bears team who won the Super Bowl and rapped the Super Bowl Shuffle (“we’re so bad we know we’re good”) are forever in my mind. So I hope that one of the memories associated with the Eagles being in Super Bowl 52 will be more awareness about POTS.  Congrats, Eagles on your win! #flyeaglesfly #sickbutstillsassy

Post script: I dedicate this post in memory of Elinor aka Mrs. G. who passed away this week. I have known her since I was twelve I think; she was a dear friend, another mother to me, a warrior, and a kind, blunt, sassy soul. She and I would gab for hours about our lives, news, and sports – even football, swapped books, shared a love of snail mail, and put on brave faces when times were tough. She was often my Valentine when I had none, remembered my birthday no matter what, and was always there to celebrate milestones. She will be missed but will forever live on in my heart and in those of her family and friends. I have no doubt that every time a nurse misses my vein, she’ll cuss from above with me!

northera is not for me

Before I bid adieu to 2017, I tried one more medicine for my postural orthostatic tachycardia syndrome (POTS), Northera (also known as Droxidopa) in December. According to the literature, Northera is a synthetic amino acid precursor of norepinephrine used for the treatment of orthostatic dizziness, lightheadedness, or the “feeling that you are about to black out”. From my understanding it theoretically should elevate your blood pressure (but not to an unhealthy high level). It is approved for orthostatic hypotension and is evidently a commonly prescribed drug for patients with Parkinson’s.

I was instructed to take Northera twice per day (no dosing up for this drug, just a dive right in it approach), take one dose in the morning and the second dose about three to four hours before bed. I was also instructed to take my blood pressure (BP) three times per day and if I had to take Maxalt for a migraine to skip a dose of the Northera (this is because Maxalt and the Northera combined could elevate my BP to an undesired high level). And if my systolic got to 120-140 I should stop taking Northera (that is the upper band of the BP – and mine never got above 110, it actually hovered in the 90s at best).

I started taking the Northera on a Friday. I persevered for two weeks. In those two weeks, the medicine barely elevated my BP (we would monitor my BP after I stopped taking the Northera and the levels were the same). The only thing Northera did succeed in doing was making my head rage more than usual and I spent most of the time bed ridden. Even taking one dose per day still caused my head to rage more than usual. The experiment was another #fail and we all concluded that Northera was not for me.

Again it was another disappointing drug experiment that left my body worse off and my spirit broken. However as I write this I am reminded that there may be a drug out there for me, so don’t let my experience deter you from trying Northera if you suffer from POTS. It is a rough road trying all the meds out there because there is no guarantee that there is one that will work and in my case all the POTS meds have done my body some form of damage. I am left still searching for my special sauce. So I entered 2018 on a down note, knowing that I would be taking a break from meds for a while. Both my body and my spirit need a break, ironically aligned to winter break for kids in the US. Hopefully an extended “winter break” from experimentation will do me some good. #sickbutstillsassy

gleevec goosed me

As I shared in November, I was both relieved and heartbroken to share that I was diagnosed with mast cell activation syndrome (MCAS). One of the reasons I was relieved was because it meant that I could be prescribed a medicine called Gleevec (also known as imatinib mesylate), without a diagnosis I couldn’t. I was led to believe it could be the wonder drug to control the mast cells that have been severely misbehaving in my body.

If you Google Gleevec, you will see that it is used to treat Leukemia. It is a kinase inhibitor – a targeted cancer therapy, which in the case of MCAS would in theory stabilize mast cells. Again it is a drug used off-label for MCAS. I was prescribed 100mg, twice per day but was to start at 100mg at night for a week and then start taking it twice per day. Again I was a lowest dose candidate. Even though it has been on the market for years and I purchased a generic it was still the most expensive pharmacologic experiment I have ever embarked on. The cost still makes me bitter (health insurance means nothing, which is a separate rant). If it was a success I couldn’t afford the monthly cost but I will ruin it to say that four days in, Gleevec wreaked extreme havoc and it makes me sick that I wasted so much money and its impact on my body is still haunting me.

I took the first pill on a Friday night in November. I woke up on Saturday morning feeling a bit off and with acne/rash on my face and neck. That afternoon I crashed hard. Sunday my face and neck looked worse – and my chest was covered. And I was extremely fatigued, barely able to get out of bed. Monday the rash/acne/blisters had spread to my legs and my feet were swollen and I was still fatigued. Ironically that Monday I had an appointment with my primary care provider (PCP) for a blood draw because of a different issue. By Monday my entire body was itchy and burning on and off so I was relieved to have an appointment with him but not sure how I would make it out of bed. By that Monday appointment I’d had three nights of pills and it would turn out that Gleevec would have already impacted my creatinine level (a kidney function). I was also losing more hair than usual (I do have alopecia, so more hair loss than usual in just three days was disconcerting but looking like a leper and feeling like I was on fire while comatose was of more immediate concern). Yet I still took a fourth pill. I didn’t find out about the blood work until the next day, Tuesday – and that is when I decided I’d done enough damage to my body. Four pills resulted in HELL. It took about two weeks to not look like a leper. My skin is still reeling months later but at least I don’t look like a leper just like a teenager with acne I suppose.

The biggest irony to this disaster is that Gleevec was supposed to control rashes and calm my MCAS symptoms. Instead it created an epic outbreak, where not only was my skin full of rashes and acne, it was also blistered and bubbly – and itchy and burned. It was physically and emotionally painful. I was so excited to try a dedicated MCAS medicine but it turned out to be such a disaster. I also slept through Thanksgiving so I missed out on Turkey and cranberry sauce (about the only two easy gluten free things I am guaranteed at the table), not to mention good company. If you have read Dr. Afrin’s book Never Bet Against Occam you will read about the patient success stories on Gleevec. Don’t let my experience deter you from trying Gleevec but be aware that it may not be all rainbows and unicorns. Not only did I look like a leper but my kidney function was even impaired after three pills. This drug failure left me feeling very goosed (oh yes, pun intended!) and mightily betrayed yet again by my body. But I would and did pick myself up again in December and would try one more drug, a postural orthostatic tachycardia syndrome (POTS) related drug, that I had purchased back in October as prescribed by the Texas dysautonomia experts… #sickbutstillsassy

mestinon messed me up

Sometimes they say you can’t go forward without looking back and sometimes they say you have to let go to move forward. Either way, I am feeling like 2018 started off on a rough note, the same note that 2017 ended on. I pretty much dropped off the proverbial map back in October 2017 so I may as well start there with one of my updates.

Ironically during dysautonomia awareness month I learned from a team of dysautonomia experts based in Texas that my dysautonomia was severe. I was prescribed three medicines to try much to my chagrin (I was to introduce one at a time, in the hopes I would eventually be able to take all three). They listened as I shared that my body didn’t like drugs but they insisted that I needed them to try to get more vertical. They didn’t understand how I wasn’t in a wheelchair. For me, I am either semi-vertical or bedbound, I will not be bound by a wheelchair – unless the few times you find me in an airport. With much convincing from my family and approval from my local specialist, I relented and decided I would try two of the three (as only two of the three were approved by my insurance – the third would require me to go into heart failure first) medicines for my Postural Orthostatic Tachycardia Syndrome (POTS).

So back to the medicines, one was called Mestinon also known as pyridostigmine bromide. If you Google Mestinon, it comes up as a medicine used to improve muscle strength in patients with a certain muscle disease, myasthenia gravis. It works by preventing the breakdown of a certain natural substance, acetylcholine, in your body. Acetylcholine is used in both the sympathetic and parasympathetic nervous systems. It is theorized that Mestinon will increase parasympathetic nervous system activity and therefore decrease the heart rate in POTS patients.

So back in October I started the first experiment with Mestinon; I started on the lowest dose of 30mg for a few days, taking one tablet at night. Then decided I could manage two tablets, one in the morning and one at night. That’s when I realized “Oh no, my body was actually not tolerating the medicine.” So I went back down to one per night and realized that I still couldn’t tolerate the drug. Let’s see: my head raged more than usual, I had stomach cramps for the first time in my life (I hadn’t even been subjected to cramps after twenty years of IBS nor did I suffer from monthly menstrual cramps), my heart rate dropped to under 40 (that’s called bradycardia and can be dangerous), and I had an increase in itchy episodes. My list of issues could go on but between my stomach and my heart rate I knew that the Mestinon had messed me up. I persevered for two weeks before my specialist told me to stop taking the drug; it was clear my body couldn’t tolerate it, it was making me worse, and my heart rate was dangerously low. Months later, the stomach cramping, though not as severe, is still haunting me.

While this may be another patient’s wonder drug, it was a nightmare drug for me. Actually nine out of ten drugs is a nightmare for my body. So if you’re thinking of trying Mestinon don’t let my review stop you. This isn’t the first POTS related drug I have tried, I have tried many pharmacologic options since 2015 and all have failed to help me (to name a few: Florinef, Propranolol, Modafinil, and Midodrine – all have a different purpose – and even prescribed salt tablets wreaked havoc in my body). (Note: All of these drugs are to treat symptoms not to cure POTS. Furthermore, they were developed for other conditions not specifically for POTS and are therefore used off-label. There is no drug on the market designed specifically for POTS to my knowledge, hopefully one day that will change.) For now, it appears I am paralyzed, not sure whether I should look back or look forward. It is hard to keep trying new medicines when they do so much damage. But I can’t move forward without sharing my past. So here you have my messed up Mestinon experience and why I was so reluctant to try yet another drug since most experiments seem to cause more harm than good. More medicine anecdotes from 2017 to come…and all are anecdotal nightmares much to my dismay. #sickbutstillsassy

“Bye, Felicia!”

Healthy or not, holidays can be a stressful time for people. Thinking of and purchasing the perfect gifts, getting one’s home ready, preparing for house guests, traveling, and the list goes on. This list for a healthy individual is overwhelming – and often more stressful when family dynamics that are not ideal are put into play. But when you add “not healthy” into the mix, it can be a holiday nightmare.

So a few notes for my fellow patients: be gentle on yourselves, know it’s OK to bail or say no, allow others to help you, and know that all moments can be classified a “holiday” when your body is cooperating so not to worry if you actually miss the real holiday! (I’ve learned the past few years to let go and not plan after missing many holidays and birthdays. It’s hard to not have expectations and to miss out but I have to remind myself to enjoy the moments when my body does cooperate even when they don’t fall on the actual holiday. Having just missed out on Thanksgiving, I understand being bitter but it doesn’t change anything or bring anything back, just means I have to “celebrate” another day when my body is more cooperative.) And a few notes for loved ones, family members, friends, and caregivers of the chronically ill: we truly are sorry if we didn’t get you cards and/or gifts this year, please cut us some slack, please continue to invite us out and we’ll join the festivities if our bodies allow us to, and thank you for your continued patience with us – we are forever grateful.

Needless to say 2017 was not the year I had in mind when I was bidding 2016 farewell. I thought 2016 was bad, never did I imagine 2017 could be worse. As always, I will not have resolutions for the coming year, just new hopes. As I bid 2017 adieu, I will not hope for a better 2018 instead I will just hope for a year that is not worse. I’ve set a low bar in the hopes I won’t be disappointed with 2018. Insert the phrase from Friday: “Bye, Felicia!” 2017, you sucked but hopefully 2018 won’t suck as much! Happy holidays! Happy and healthy 2018 y’all! #sickbutstillsassy

MCAS | more about it & my tricky testing tale

Mast cell activation syndrome (MCAS) falls under the umbrella term of mast cell disease (MCD).  MCAS is an immunological condition in which mast cells inappropriately and excessively release chemical mediators that result in a range of chronic symptoms, including anaphylaxis or near-anaphylaxis attacks. Essentially one’s mast cells are extremely reactive throughout one’s body, so just think of your mast cells behaving badly.

According to my specialist, common symptoms include but are not limited to: flushing, itching, hives, stomach pain, and headaches.  Triggers can include temperature extremes, stress, chemicals, medications, physical stimuli, smells, and/or food. So yes basically everything can be a trigger, making public outings particularly challenging, especially for patients who have severe MCAS.  Every patient is different – just like diagnosis and treatment, symptoms and triggers are unique to each patient.

MCAS is a relatively new disorder and seemingly common in the postural orthostatic tachycardia syndrome (POTS) community since it can be comorbid with POTS and/or Ehlers-Danlos syndromes (EDS).  (MCAS should not be confused with mastocytosis, which is another type of mast cell disorder characterized by abnormal accumulations of mast cells so one has too many mast cells.) Similarly to POTS, doctors have a long way to go in learning about, diagnosing, and treating MCAS.

MCAS is typically diagnosed through blood and/or urine tests (and biopsies can be ordered too in some cases, which I personally did not undergo).  Urine tests includes histamine and prostaglandin D2.  Blood tests includes tryptase, N-methyl histamine, histamine plasma, prostaglandin D2, prostaglandin F2, and chromogranin A.  Some people will have positives immediately and others will struggle to get a positive.  Mast cells can be tricky little bastards to catch.  There is no consensus among the (few) experts on actual diagnosis of MCAS (see Appendix 2 of Dr. Lawrence Afrin’s book, Never Bet Against Occam; he is a known medical guru on MCAS).  So your actual diagnosis will depend on what diagnostic criteria your doctor ascribes to.

For those of you not familiar with testing for MCAS, you can’t take nonsteroidal anti-inflammatory drugs (NSAIDs) or any proton pump inhibitors (PPIs), or use salicylic acid acne face wash, essentially not taking or using any product that contains aspirin or anti-inflammatory medicines for at least five days prior to a test as any of these can skew the results. Also, not all labs are equipped to test for MCAS (e.g., tubes should be put on ice). So it’s a process; you need to be sure the lab is equipped and that you have removed all medicines from your daily regime (orally and otherwise).

I had many, many blood draws and urine tests before we caught my tricky mast cells.  It doesn’t mean that I didn’t have MCAS.  It may have meant that the lab had screwed up or that my mast cells were being evasive.  Or I might have accidentally taken an NSAID or my face wash had an ingredient that it shouldn’t have within the five day window. I had many classic clinical symptoms of MCAS – and other doctors besides my specialist suspected I had MCAS.  So I am fortunate my specialist pursued the MCAS diagnosis…because recently we finally got “lucky”.

Long before my diagnosis when I first heard the word MCAS, almost two years ago now, not only did Dr. Afrin become a resource for me, but so did the blog, www.mastattack.org.  This site has a wealth of information on MCD, including MCAS, along with the blogger’s experiences and research.  To quote the musician Run DMC, MCAS testing is “tricky” and we may not always be able to catch the mast cells “right on time”.  So be patient and persistent if you or your doctor suspect MCAS.  #sickbutstillsassy

thanksgiving timeout

Thanksgiving this year has snuck up on me… I was wholly unprepared for more body backlash on yet another drug experiment that I recently started. This was my first trial dedicated to a “big hitter” drug for my mast cell activation syndrome (MCAS) diagnosis. I am covered in a combination of a rash and acne breakout and have been sleeping mostly since I started this drug. With every new drug, I keep naively thinking “this one will work!” I do not know yet if I am poisoning my body or this backlash will be transient as my body acclimates to the drug.

With all this going on, I am finding it very hard to be in a Thanksgiving mood. This will be the most expensive drug experiment to date if it actually works and I make it past the extreme fatigue and extreme rash/acne body breakout. Should I be thankful when a drug that is a generic will make me go broke? That our healthcare system is so messed up that even having health insurance is so costly? That my body is so screwed up that it continues to reject drugs that are meant to help it?

My vent could go on for hours and I know I would still not feel better. I have cried – and while I am very fortunate that I have the ability to cry still because with Sjogren’s I won’t always – crying doesn’t make me feel better and my head feels worse. So I end up laughing even in this really sh*tty state because it is sort of ironic that the medicine that is meant to help control my MCAS symptoms has now created one epic eruption of a rash/acne breakout virtually everywhere on my body (I mean that is par for the course in my world, right?).

So here’s my unsolicited Thanksgiving timeout advice: Be thankful for what you have (or don’t have, because trust me, you don’t want this nasty rash/acne breakout or fatigue). Always know that you don’t have to keep up with the Joneses (or Kardashians). Family can be a pain in the a** but that’s OK because family love is unconditional (if not, then they are not worthy of you). Of course Thanksgiving or even Friendsgiving can be stressful, especially for the cooks in the kitchen (but try not to stress too much, it ain’t worth it). But above all, Thanksgiving is also a time to give (in some form or fashion, even if you don’t have a lot – pay it forward) and to be grateful (even if it is a struggle). So while I am not thankful for my body, I am beyond grateful for the support that I do have. Wishing y’all a happy, healthy, and not too hectic Thanksgiving! #sickbutstillsassy

PS. I will write a specific post about this drug experiment soon as I am not sure how this will end yet. I also still need to write a “post mortem” on my failed October drug experiment for my POTS‎. It’s hard to keep up when I’m mostly sleeping…

it’s official: I have mast cell activation syndrome (MCAS)

I first learned about mast cell activation syndrome (MCAS) back in February 2016 when my specialist sprung that acronym on me (https://wp.me/p4OQn7-a2). Given my clinical manifestations of random itchy episodes, hives, and other symptoms, she has suspected that I have MCAS (which can be comorbid with dysautonomia). But beyond consistently high IgE blood results, she couldn’t confirm MCAS. Many negative blood and urine tests later I was skeptical even though she assured me that for some patients, positive MCAS results can be elusive. But she was convinced that I had MCAS so we continued to periodically test for it.

At my October appointment, I had yet another blood draw, and low and behold I FINALLY had a positive test result. I didn’t know whether to laugh or cry when I heard that I had a positive result for one of the tests. In fact, I am still pretty numb. MCAS is cruel. It varies by patient – MCAS has dermatological, neurological, and other systemic impacts. Some patients can get it under control with H1 and H2 blockers. Others can’t. Some can be severely allergic to themselves, others more mildly. Again we each have different triggers and symptoms – and it is a chronic condition. It explains so much about my out of control body but I really don’t want another diagnosis, I have plenty already. Furthermore, I would really like a diagnosis that doctors know more about; this one is a newly described disorder with the first year for proposed diagnostic criteria only coming out in 2010. A great reference is Never Bet Against Occum, by Dr. Lawrence Afrin. I read it last year and have subsequently dusted it off since my recent diagnosis.

Ironically, starting in September my body entered a crazy itchy flare. For the first time, I embarrassingly experienced itching in my lady parts (‎as if itching in my armpits and scalp wasn’t uncomfortable enough). After two weeks of the itch, I ended up going to the OBGYN because I was desperate for an answer and a reprieve. I was hoping for a yeast infection, a UTI, or dare I say a STI – something “normal” that could be “fixed”. Much to my relief and dismay all my tests came back negative. Looking back, it was a great example of a MCAS flare or attack. Dousing myself in Cromolyn was the closest I got to some “relief”. The OBGYN had no solution for the itch of course, other than a steroidal cream that I’ve tried in the past for other body parts that made things worse. So yeah my life ain’t sexy and what “normal” person asks for a UTI or STI?! Evidently a future sassy MCAS patient!

So now I can officially add yet another diagnosis: MCAS. My reality is that the meds that didn’t require a big hoopla haven’t gotten my symptoms under control: 1) H1 and H2 blockers don’t consistently work for me (sometimes when my body is being cooperative I am lucky for some relief), 2) Cromolyn has been a God send sometimes (I relish the times when it works!), 3) I can’t tolerate Benadryl, and 4) there have been other drug failures along the way too. That is why a positive test result was so important for my specialist to be able to prescribe a “heavy hitter” drug. We all know that my body and drugs don’t get along – MCAS may be one factor why I don’t tolerate most drugs, so it will be interesting to see if/how I tolerate this new drug – that is, assuming my insurance approves it. Stay tuned…and please excuse my continued absence as my latest drug experiment for my POTS didn’t go so well, which I will share in a future post. Of course, I have lots more to say on MCAS, including sharing details on my project that I started last year on excipient ingredients, which is now more relevant than ever. ‎It is with a heavy heart and some relief that I welcome myself to the MCAS club. #sickbutstillsassy

dysfunctional diva makes awareness appearances

I recently heard that there are two types of people who wear sunglasses inside: a**holes and blind people. Well, I am adding a third type because I’m not blind and I’m not an a**hole: me, a dysfunctional diva – and to any others out there like me who are light sensitive because of dysautonomia, migraines, or whatever ails you! I’m not really a diva, but I love alliterations and it sounds sassy. I stopped caring a couple of years ago what people think of me or what I look like. I often have to plop down on the grocery floor when I actually make it to a grocery store or cover my nose or ears in a restaurant if I make it to a restaurant. So when I am vertical, that in and of itself is a feat, thus I could care less how I look when I am inside somewhere outside of my home with my sunnies on!

But I digress because I really want to share an update. October has been a special month. But also a depressing month. Ironically during awareness month, I have learned that my dysautonomia is severe – way worse than I ever imagined. It may explain why I have continually been getting worse but it is extremely frustrating. When I have the energy perhaps I will share the details of how I got to a “severe” dysautonomia diagnosis but for now suffice to say I have been convinced to try new meds yet again…

As for the special part, I did make it to the fundraiser, Dollars for Dysautonomia. Over 200 people attended! We far exceeded our pie in the sky goal of donating $20,000 to Dysautonomia International. Tanya and Eric took my vision and made it a reality – one that I could never have made so beautifully turquoise and successful. There were so many people there who had never heard of dysautonomia and POTS so we got to educate them through Dr. Schofield’s speech, which was on point and the perfect primer. Both April (a teenager with POTS) and I gave speeches. (I did leave shortly after my speech as the evening was as anticipated just too much for my body.) We even had an auctioneer who was amazing and funny. (We had to hire a professional to auction off the so many great in-kind donations we received.) Although the Mayor of Denver could not attend, we had a representative from his office – she was fantastic and was blown away by the sheer number of people who attended a Thursday night event. The generosity and support of people was amazing. Thank you to my family and friends who supported me and to my new friends I made through Tanya and Eric! Their family, friends, and community support of the event was incredible! And of course to my POTS friends, this one was for you (and me too)!

My other October “baby” was getting Denver lit up turquoise. And it was so stunning to see the City and County of Denver Tower building lit up. On the fourth and final night, we had our Colorado Support Group meet in front of the building for a group photo – and a professional photographer donated his time and services. (Thank you Marco! If you’re ever looking for a photographer, he’s amazing! Marco Briones can be contacted at: Macobri@msn.com.) Like attending the fundraiser, I was hell bent on going – my body of course was under protest (and still raging from the event) but it was NOT going to stop me from seeing my turquoise mission accomplishment. I think there were about 60 of us. I almost cried.

My ears are still ringing, my head raging more than usual, and my energy lower than usual. I’m pretty sure my body will take a while to recover. I debate whether it was “worth” it – for awareness yes, for my body no. My blog has taken a backseat and may for a while as I continue to struggle with getting a grip on my health. For now, this dysfunctional diva knows one thing is for sure: awareness will continue on even when October ends because there are too many of us suffering and still not enough people know what dysautonomia is including many doctors. #MakeNoiseForTurquoise #sickbutstillsassy

PS. Our Crowdrise page is open through October if you’d like to donate and of course Dysautonomia International takes donations throughout the year. There are also many ways to help raise awareness, which can be done throughout the year too, not just October. One easy way is for you give your local providers a flyer on POTS to help spread awareness in your communities, so please feel free to contact me or visit http://www.DysautonomiaInternational.org.