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…

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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.    

free falling amidst awareness activities

Fall has arrived. Usually I love it. It’s boot weather again so when I feel like wearing compression socks they are hidden. Football season is back. I can feel like I’m in good company with my football buddies so my couch doesn’t feel as lonely even if it’s just me myself and I. Drinking coffee seems more natural in the cooler weather. But yet this October arrived and I’m just not feeling it. Hopefully that will change soon enough…

October is also dysautonomia awareness month. You know this already if you’ve been following my blog for a while, or if you yourself have dysautonomia or a loved one you know does. Dysautononia is the umbrella term for one of my conditions, postural orthostatic tachycardia syndrome (POTS). This year we have put Colorado on the map! We have so many awareness activities set for the month. I accomplished my mission of getting the City of Denver lit turquoise! For four nights, October 18-21st from dusk until 11PM each night the Tower of the City and County of Denver building will be lit up turquoise for the first time ever.

I also had a vision of a cocktail fundraiser for dysautonomia. While I couldn’t take it on from A to Z like I would have done in my former life, fortunately, parents of a teen POTS patient decided they were all in. I met Tanya and Eric a few months ago…I shared my initial research and that I couldn’t take on the event. They embraced it and are taking it to heights I never imagined. Dollars for Dysautonomia will take place on October 19th. We – more like they since my contributions have been limited – have raised over $10K and sold over 100 tickets. For a first time event I think we have crushed it – we initially envisioned the event as a raffle but instead it will be a silent and live auction since we have had so many awesome in-kind donations. We have some sponsors and lots of donors. It will be informative as we will have a local expert speaking, it will be fun with a photo booth and live music, and of course we will be raising money through our auction items which include condo stays, gift cards, a signed Kobe basketball, and so much more.  We are truly humbled by the support! If you’re interested in supporting us – be it by spreading the word or donating, the link is: www.crowdrise.com/dollarsfordysautonomia.

Colorado Springs also got lit up turquoise this year. I also got billboard space donated again this year around the Denver metro area again! At least three cities received proclamations (I didn’t request any this year). And to boot two local businesses are supporting our cause (thank you to Tanya!). You can dine and donate at Modern Market at Southwest Plaza Mall in Littleton from 5-8PM on October 24th. Just mention “Dollars for Dysautonomia” and 50% of your final check will be will donated to Dysautonomia International. Then if you’re into yoga, for four Sundays (October 8, 15, 22, and 29) at their 12PM class at Sumits Yoga at Broadway and Mineral in Littleton will donate 100% of the donations they receive to Dysautonomia International. Thank you to these businesses!

So it’s an exciting October for awareness in Colorado this year! Unfortunately, this year my body is the least cooperative it has been and its free fall continues. Nonetheless, I intend to make it to Dollars to Dysautonomia (at least for a cameo) and to see the lights (even if just a drive by)…these things don’t happen daily so I am determined to try to see my own efforts in action. After all, they say turquoise is a stone of protection and strength – and historically protects riders from injury due to falls, which sounds too apropos in my POTS world. Here’s to raising awareness and more dollars for dysautonomia!

PS. The news about Tom Petty broke after I originally wrote this post but right before I scheduled it. He is one of my favorite musicians so I have left the title the same and feel it is an ode to him. Speaking of music, what occurred in Las Vegas is horrific and my heart aches. My thoughts are with those impacted by this event – and those natural disasters around the world including Irma, Maria, and the earthquake in Mexico. The global news has not been pretty of late.

[survival] mode

I haven’t had much energy of late. And I’ve been spending a lot of time with doctors or staring at the ceiling willing my raging headaches to leave me alone. I haven’t even been writing much in my head either.

Compounding that, for those who have recently seen me, know I have recently lost weight. Skeletal comes to mind, a new symptom. Under 110 pounds with clothes on. Feeding tubes have been suggested and refused. I won’t do any more medical devices in my body. I am allowing some investigation as to why I have been dropping weight. Though I know why: it’s not easy to consume food when I am nauseous, or my tongue is swollen, or I can’t handle the smell of food, and/or I can’t swallow. Beyond that I don’t know if there are actual structural reasons or if it truly is just autonomic dysfunction (thank you POTS) or something new.

For now, blood work shows I am maintaining vitamin levels and my organs are not compromised. In the coming weeks, I hope to learn more. I haven’t lost my *sick sense of humor* yet as my merry go round of symptoms continue including my #peeingproblem, which has gotten out of control and has led me to even joke that I now “mark my territory” when in public. Some things don’t change, so instead of slaying my illnesses in some form of fashion (e.g., with my sass or humor), I’m evidently cuing up the music to I Will Survive (by Gloria Gaynor). Though I imagine there is a sexier song out there, I just haven’t found it yet. #sickbutstillsassy

texas on my mind

The summer has been a blur for me. It’s hard to believe that September is here (which means football season has returned). While my health continues to deteriorate, my mind has been fixated on Texas. As some of you know, my sister and her husband live in Houston (they are fine thankfully but some friends did not fare as well). Me, the non-news watcher, was suddenly obsessed with listening to or watching the livestream of Texas news or the Weather Channel when my head was not raging. It was heartbreaking to watch the images and hear the stories. It must have devastating for people with good health, I can’t even begin to imagine the impact on those with poor health. I think of the Medical Center, the mecca for medical care, which was inaccessible during Harvey due to flooding. Both airports in Houston were shut down. Streets became rivers. Harvey shut down Houston, the fourth largest city in the United States. It destroyed surrounding towns and cities in Texas. It will take months and years to recover. It is unimaginable. My heart bleeds.

I can’t even begin to think about writing about me. This is about Texas. Everything is bigger in Texas. I know because I lived in Austin, Texas for six years. Mother Nature is evidently bigger in Texas too. Hopefully the recovery effort will be too. So far it has been incredible to watch neighbors helping neighbors and people coming together. It is heartwarming to see the donations pour in – and I can only hope they will continue to in the months to come because this has been one epic storm that has severely impacted the fourth largest city in the US and so many surrounding cities and towns. #PrayersForTexas #TexasStrong

Rituxan round 3 round up

The other week I had round three, marking the six month infusion of Rituxan. Walking into the Infusion Center I was already in bad shape: I’d been up most of the night before with my #peeingproblem and was still dealing with the peeing episodes as I entered the building. Not to mention, I had a headache. It was probably teetering at an eight out of ten at that point. Before the IV was inserted in my arm, I peed three times. I was freaking out and swore that I would not pee again once I was hooked up – I was determined to not go again!

I was also silently hoping that the nurse would not blow a vein. My veins had taken a literal beating in the month of July and my arm was still sensitive. Lo and behold, I was spared and the nurse got the IV in on the first attempt (as it should be, might I add!). Also, the infusion pretty much started on time (again, as it should; it was great not to have to wait an hour plus).

I pre-medicated at home with two Ibuprofen (instead of Tylenol), one Zyrtec, and one Klonopin. (Please consult with your doctor; this pre-medication combination was not done on a whim. It is a protocol that my specialist and I have found to replace any IV meds since those always made me feel worse. We finally have a combination that works pretty effectively for my body.) My vitals prior to the start were fine and I was not running a fever, which I was excited about since I have been more often than not of late been running a low grade fever.

My vitals stayed consistent during the four hour infusion. The infusion overall was uneventful thankfully. The only issue is that my head kept getting worse and was at explosion point – it was beyond a twenty on a scale of one to ten when I left. I wanted to rip my head off. I did not sleep at all through the infusion. I didn’t have any itchy reaction or any other crazy reactions during the infusion. (I didn’t’ even have to deal with my #peeingproblem – the three times before was the end THANK GOD!)

So again this infusion was different to the first two. Besides my head (and inbound #peeingproblem), it may have been the easiest. However, I was severely comatose most of the following day. Now I’m back to the waiting game, repeat in six months and continue to hope for improvement in the interim.  Unfortunately, I haven’t noticed any improvement in the past six months, so time will tell if the next six months will be the up I’ve been hoping for.

getting hearty with a Holter

Many of my postural orthostatic tachycardia syndrome (POTS) friends have serious heart issues and have cardiologists on their medical teams (even though POTS is not a heart condition). My medical journey to date hasn’t included heart drama minus my heart racing. My heart racing hasn’t been consistent or alarming enough for me to warrant a trip to the ER or seek a cardiologist’s opinion. That is, until recently when my heart started to concern me but not in a “tachy” sense.

The cliché of when it rains it pours seems to be all too apropos of late. Amidst my headache drama I was noticing that my heart had dropped to low 40s at night. The previous low I’d noticed was 48 – maybe a 46. So 44 seemed low. A night of 42 seemed particularly strange after being pumped with a caffeine IV, so I thought it was worth mentioning to my primary care physician (PCP).

My PCP suggested that I do a 48 hour Holter monitor test prior to him referring me to a cardiologist. (For details on the Holter monitor, you can check out: http://www.heart.org/HEARTORG/Conditions/HeartAttack/DiagnosingaHeartAttack/Holter-Monitor_UCM_446437_Article.jsp#.WXJnDjFK3IU.) Of course I asked him, “Well what if it doesn’t capture the drop…can we repeat it?” He replied with, “Let’s see what it does capture and go from there.” Fair enough. A few days later, I went to get outfitted. I decided to not Google what it would entail and just showed up with a list of questions. The only instruction I had when I made the appointment was that I could not shower for 48 hours. That would be no problem in my world! I was more concerned about if my body would find this too uncomfortable, or if I would sweat it off, or if my heart would not drop, or one million other things – I have lots of practice not showering for 48 hour long periods.

I showed up and the nurse asked a few a questions. I smartly had taken a Zyrtec and Zantac before arriving. The nurse would put five sticky nodes on my body – three on my chest and two on my sides. She would also put tape over all of them due to my self-shared sweating issue. These nodes would have cords attached to a small monitor that I chose to pocket instead of place around my neck. Leaving my neck out of it, would be one less potential way to irritate my body. I was also concerned that in my sleep that I would roll on the monitor – she warned me of that. Evidently, I was very subconsciously aware because every time I awoke on a different side I had flipped the monitor to the appropriate other side!   And thankfully I did not sweat off the nodes or have a serious allergic reaction to the tape or the sticky pads.

I was also instructed to keep a log of my symptoms during the 48 hour period. For those of you who have done this before, not sure how you have tackled this but I struggled. The examples were not applicable – and quite humorous I thought: “vacuumed and dizzy” “ran and headache”. And in my case, I live with a headache 24/7. It would have been interesting to have been up for PT during this 48 hour period but alas I was not…perhaps if there is a next time!

So I ended up typing up what I will call my “addendum” in which I explained I have constant and varying symptoms. I could have written a book but I knew that it would need to be short and sweet.   I wrote two long paragraphs that started off with “I have constant symptoms, the intensity varies. I have had a constant headache now for a few months that gets worse upon standing…” I also included that “I noticed last week that my HR dropped to 42 during the night, which had never occurred before…”

When the 48 hours were over the monitor screen went blank. I knew then I could remove the nodes. That hurt and my skin was raw and sticky. I bravely decided I would use Goo Gone to remove the stickiness. I had images of it burning my skin and wreaking bodily havoc but thankfully it did not. I rushed to wash it off with water and soap. Thankfully no drama ensued with my body. This could have gone south in a big way – as could have the whole 48 hour period but it was relatively peaceful minus some itchiness and sensitiveness. (I love Goo Gone but I’d never used it on my body, again I’m very thankful this experiment didn’t go awry so I will tepidly endorse it as a quick means of removing sticky stuff from skin, but don’t forget to rinse straight away.)

Then I just had to patiently wait for a cardiologist to review the data and send the results to my PCP. I was told it would take 72 hours. I have no idea if the cardiologist who read my data thought I was nuts or what he thought of my “addendum”. But at this point in my medical journey, I have nothing to lose; I go for broke and put it all out there. I want the best for myself – and if the cardiologist can’t see just how seriously I am taking this then I don’t want him near me, even indirectly reading my monitor data.   (I have no idea if anyone read my “addendum” or what they thought of it as it would never be referred to in the report.)

Of course it took longer than 72 hours to get the results. I was fairly certain that my results would be normal as I didn’t think my heart had dropped to the 40s. Being attached to any medical device is stressful for me, even this benign Holter monitor. And so not to my surprise, the findings were indeed pretty normal and not in the low 40s. #hearton So for now, my PCP has attributed the drop to the low 40s to my autonomic dysfunction (my POTS) and no need for a cardiologist at this time. There is always mixed relief when I get back normal results; yay for normal but frustration for no true explanation but it always seems to go back to the POTS. So that about sums up my experience “getting hearty with the Holter” (cue the song Gettin’ Jiggy Wit It). I now have more appreciation for STOP…get it, POTS spelled backwards? #sickbutsillsassy

viral invasion

Did you know that chicken pox is in the herpes family?  That mono, aka the kissing disease, is also in the herpes family?   I read about these facts last year when I learned that I had elevated levels of IgM of HSV-1, which is in the herpes family.  The herpes simplex virus is categorized into 2 types: herpes simplex virus type 1 (HSV-1) and herpes simplex virus type 2 (HSV-2). It is estimated that about 60-80% of the population have HSV-1.  So readers, most of you naturally have it and may not even realize it since most oral herpes infections are asymptomatic.

As I shared last year, I supposedly had an HSV-1 infection; my blood work showed a very elevated level of IgM, but a negative IgG and a negative PCR and no outward cold sores.  Yet, a neuro-virologist decided to treat mine as an active infection given that I had a compromised immune system.  She first put me on an oral antiviral, Valtrex, at an extremely high dose – as if I had an acute, active infection.  As my IgM levels continued to rise, she would then decide to put me on an IV dose of another antiviral, Acyclovir.  I would be in a death like state for the two weeks I was on the IV.  I refused to go to the ER during this period.  The doctor never checked on me once.  When I told her it almost killed me, she didn’t follow up.  I have never seen her again.  Needless to say I fired her from my medical team.  My specialist briefly had me go back on the oral antiviral when she realized that my IgM level didn’t go back down to the normal range after the IV.  It was then that we realized my body never liked the oral antiviral either, although it hadn’t put me in a death like state like the IV one.  This saga ended in May 2016 when I decided I was done taking antivirals since they were making me physically worse (not to mention I was emotionally traumatized too after almost dying from the IV antiviral).

While it was appropriate to “treat” the HSV-1 “infection” – let me be clear, it was NOT an active infection, nor was it an acute infection.  In hind sight, it could or should have been treated with a low dose in an attempt to SUPPRESS the infection.  A high IgM alone does not signify anything, particularly in my case since it is well documented that I have trouble switching classes of antibodies.  To further muddy the waters, an infectious disease doctor recently explained to me that blood work for patients with autoimmune diseases should always be reviewed skeptically; antibodies can “cross react” and therefore not always be accurate.

In November 2016, my specialist ran my blood for HSV-1 IgM and IgG again.  This time it was back to normal.  What was weird, she also ran it for VZV and suddenly, I had a high level of IgM for VZV, which had previously always been normal.  So my specialist even called and emailed the neuro-virologist who I refused to see again to ask her what was going on – well, she didn’t even have the courtesy to respond to my specialist. My blood work was run again in July 2017 and again HSV-1 IgM is normal but not the VZV IgM.

This all leads me to say, I recently added a new doctor to my medical team.  If you hadn’t guessed it, she is an infectious disease doctor.  She ran PCRs of the entire Herpes family.  All are still negative.  And she explained that we are going to try to suppress my high IgM for VZV (and by the way, VZV stands for shingles) with an oral antiviral, this time I’m trying out oral Acyclovir at a low dose along with an antibiotic, Doxycycline.  So no, I am not covered in a painful shingles rash, thankfully. And we’ll see how this medicine experiment goes (so far, not so good); I may just have to give up on the oral antivirals and try the antibiotic solo.  Suppressing this latest “viral infection” may help calm my body down but we are not certain. We are hoping, however, that by trying to suppress it with low dose meds it will prevent it from becoming an active infection in my compromised state—that is why I am willing to attempt giving these meds and this new doctor a chance.

My body may just be taking me through the nine viruses within the Herpes family… be it actively or inactively.  I’ve had mono, medically known as the Epstein–Barr virus (EBV), not once but twice and chicken pox. Then my blood work showed elevated IgM levels of HSV-1 last year and now VZV this year.  Not sure what viral invasion is next…any wagers?  I know I’ll be OK with any as long as they never become active or I don’t land another doctor who thinks just a high IgM equates to an active infection. #sickbutstillsassy

Post script note: Some doctors will argue that blood work is enough to determine an active infection.  Without clinical evidence I am not inclined to ascribe to that line of thinking, particularly when in my case the antiviral treatment did not lower my IgM blood levels and the dose almost killed me. Keep in mind, this is a blog of my experience; it does not serve as medical advice, as I am not an MD, just a master of diseases by experience not official training. 

autoaylie’s first excursion to the ER

I recently had my first trip to the emergency room (ER) as a chronically ill patient living in an autoimmune world. It was a Monday. I knew which ER I was going to. I was on a mission to get a caffeine IV per my primary care physician (PCP) in the hopes to stop the hellish cycle of headaches I’d been having. My sister was in town and drove me. I hadn’t showered in a couple of days and my left arm looked already beat up courtesy of two nurses the week before from the infusion center who blew multiple veins trying to get an IV started for my take three of a one liter of saline infusion.

I did not opt for a trip to the ER lightly. In fact, I took the entire weekend to fret about it. And hoped that the steroids my PCP had prescribed me would end the cycle of my hellish headaches. I never thought I’d say that headaches could be worse than migraines. But my migraines now have a contender: postural headaches. Every time I stand, my head rages. The worst part is that I find no relief laying back down. I used to. Somehow between October and now, these postural headache attacks have become more frequent and more disabling than ever. (I will blog about these postural – or orthostatic – headaches in a future post so stay tuned; there has been a lot of recent research and talk in the postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndromes (EDS) communities about low cerebrospinal fluid (CSF) pressure leaks and headaches. Currently, I have not been diagnosed with a CSF leak.)

So that is how I landed in the ER. There was no wait upon my arrival. But the initial no wait would be made up for because everything after would be a wait. The whole experience overall wasn’t too traumatic except: 1) initially after I was admitted and hooked up, they told me they had no caffeine IV. So I said, “Well then I’m leaving.” Luckily, turns out they did. And I didn’t have to leave. 2) The nurse blew another vein. This one would be the worst of them all. It would later look like a golf ball was coming out of my arm and it hurt like hell. I could barely move my arm. The first 48 hours were obscene and that is putting it lightly. More than a week later, it still hurts and the rainbow bruising is magnificent. 3) The caffeine IV didn’t exactly solve my head pain. It maybe took the extreme edge off, but the next day would be even worse.

They wanted to do tests like a CT scan. They wanted to do other IV cocktails after the caffeine IV. But I said no thank you to it all. First off, I want my head specialist who I see at the end of the month to weigh in on the testing. Secondly, we all know my body is super sensitive so I can’t imagine adding another cocktail to the mix. And sadly thirdly, I am already dreading the cost of this ER excursion. Not to mention, I wanted to get out of there as fast as possible and I just had one order from my PCP (though since he no longer has hospital privileges he couldn’t call ahead, which was disappointing and could have made for a particularly awful experience). Thankfully, they listened and I got released without a fuss. If I have another ER experience, I hope I have staff like them who listen and take me and my diagnoses at face value. They didn’t question me once, they didn’t look at me like I was crazy or on drugs, and they released me. I couldn’t have asked for a better experience. Well, actually I could have…no blown vein would have been fabulous but I don’t want to ask for too much now, do I? #sickbutstillsassy