My Illnesses

20180514_124711

History/Diagnoses:
Epstein-Barr virus/Mono (May 2014)
Coxsackievirus (August 2015)
HHV-6 (early 2017?)
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (April 2017)
Mast Cell Activation Syndrome (February 2018)
Postural Orthostatic Tachycardia Syndrome (March 2018)

Hey, I’m Melanie!  I grew up in southern California with my mom, dad, older sister, and dogs.  I lived in Fort Collins, CO for 4 years while earning my Bachelor’s degree, but had to move back in with my parents after graduating (in May 2018) because I needed more help managing my illnesses.  I love spending time in nature, connecting with people, and living life to the fullest, despite my challenges!

Now, here’s my story:

First it was walking pneumonia and Mono

I came down with walking pneumonia in January 2014.  I was in the middle of the last year in high school and was focused on excelling in school and lacrosse.  This bout of illness slowed me down a bit, but I pushed through and kept up the fast paced tempo I had set for my life.  I felt horrible most of the time, but I didn’t care.  I wasn’t going to let some pesky illness slow me down.  But that of course, bit me in the butt.

After being on and off sick for 6 months, I finally got a diagnosis of Mono.

The doctors told me to rest, so I did.  As a result, I began slowing down and reflecting on my life.  I realized that I was going fast in the wrong direction.  I was not living life.  I was living in the future, not the present.

After initially recovering from mono, I looked back on my journey and realized that it was the best thing that ever happened to me.  I thought that I learned a valuable lesson in slowing down and living in the moment– plus, now I was healthy again… or so I thought.

Then it was Coxsackievirus

After a few months of relative health, I started experiencing unexplained pain in July 2015.  It started with a pain in my left leg, then it spread to the whole left side of my body.  I was constantly fatigued.  A creeping zinging pain started in my back and spread to my right arm.  Then, I was having heart palpitations and sharp pains in my chest.  I went to multiple doctors and specialists and after numerous tests, none of them could figure out what was wrong with me.  I started to think that if no doctor could explain it, this pain was in my head.  But something was definitely wrong.  I felt hopeless.  I didn’t know what to do or how to feel better.  I felt defeated.

But through this purgatory of my unknown illness, I started to learn acceptance and a sense of calmness amidst the unknown.  I learned to be okay with what was happening to me, even though it was scary, and to have hope that I would be cured.

On August 7, 2015, my neurologist told me this torment I was living through was caused by an infection by Coxsackievirus B 1, 3, 5, and 6.  He said there was no cure and I could have flare ups (AKA bouts of viral reactivation) for up to a year.  Wowza.  Now I knew what was causing the pain, but a whole year of flare ups seemed too impossible to think about. (Looking back, I think about how innocent I thought this whole ordeal was going to be.)

But, I thought, when things seem impossible, that’s when you gotta rev up and beat the impossible.  And I did (relatively).  It wasn’t easy, but I made it through that year.  Flare ups happened whenever I was stressed or sick, so I really watched my stress levels and only took on what I could handle. And as a result, I had a much better outlook on life.  I slowed down, accepted my limits, realized what was important to me in my life, and saw that strength doesn’t always come from brute force, but from caring for yourself even when it’s hard. (Those were good lesson to learn since I would have to be applying them much more often in my everyday life in the future.)

Getting diagnosed with Chronic Fatigue Syndrome

And that seems like the end of my health saga, but it’s not.  After that year of Coxsackievirus flare ups, I had a blood test in June 2016 showing low thyroid levels.  I felt fine, but my doctor wanted to check into it more.  However, I left to study abroad in New Zealand in July.  So this investigation on thyroid levels was put on hold until I returned to the states in November.

Despite a torn ACL (yep, that happened throughout all this internal medicine stuff… super fun), I thought my time in New Zealand would be pretty healthy.  But I kept experiencing weird bouts of fatigue.  Amidst the dream-like state of living in another country, I chalked it up to my weird thyroid levels.  But in November, I experienced another episode of bad health out of the blue.  It was surprisingly similar to a Coxsackievirus flare up– that zinging back pain and extreme fatigue.  I thought I was done with those, but I figured maybe they weren’t over with just yet, maybe this was just one of the last flare ups I’ll ever have.

Once returning to the United States and getting my ACL surgery in December 2016, I started getting tests done concerning this weird fatigue I was experiencing ever since that flare up episode in November.

I had hypothyroidism, so I was put on iodine tablets (I was going to a naturopathic doctor at the time) to see if that stopped the fatigue, but I was still tired day in and day out, despite plenty of sleep.  So, my doctor did a food allergy test.  And boy did that come back positive (high IgG levels).  It showed that I was sensitive to a wide array of foods (eggs, sunflower seeds, amaranth, sesame seeds, milk, whey, cranberries, sugar cane, almonds, mushrooms, wheat, spelt, blueberries, shrimp, corn, and coffee beans).  My doctor figured that if I eliminated these foods from my diet, I would feel better.  And I did… but not totally better.  I still had these weird bouts of fatigue.

My doctor then gave me Enula, an anti-bacterial, anti-inflammatory, anti-parasitic herbal supplement.  This was one of those situations in which they say it’s going to get worse before it gets better.  Because of this anti-microbial, i experienced a Herxheimer die-off reaction and felt horrible for a long bit of time.  But then, I started doing well again.  Meanwhile, I was getting blood tests done to figure out what exactly was causing this fatigue.  The blood tests showed I had the HHV-6 virus.  That, combined with my history of Epstein-Barr and Coxsackie led my doctor to diagnose me with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis(CFS/ME).

Right after that diagnosis, the doctor I had been seeing stopped working at that office.  She was in California and I was in Colorado, so it was getting harder and more costly to communicate anyway, so I decided to try to find a doctor in CO to treat me (which ended up being harder than I thought it would be because I soon found out– not all doctors believe in CFS/ME).

For a few months, my flare ups were pretty controlled.  I usually went 2 months and then had a flare.  But otherwise, I was doing fine for a long time (I could be as active as I wanted basically every day).

But then, in November 2017, I had a big relapse.  It was the worst one to that date.  I experienced inflammation almost daily and had bouts of semi-paralysis where I couldn’t control my legs or body very well.  I got through it from resting, but I was unsure why I had such a violent flare up.  Looking back, I see that it was because I was just pushing my body way harder than it could keep up with.  I was running 5 days a week and climbing; something I could have done without it being a problem before my illness, but nowadays that’s an almost impossible feat).

I started going to a new naturopathic doctor in November and he tested me for Lyme again, but that came back negative.  However, it did show that I have a chronic infection of the bacteria Bartonella henselae.  My naturopathic doctor thought we should just put me on a lot of supplements in order to build up my immune system because it seems like a lot is going on.

Meanwhile, I was trying to stay positive throughout.  I was continuing to learn more about CFS/ME through online forums, documentaries (s/o to Unrest), scientific journal articles, and books. Even though I was trying to keep up a positive demeanor, my lack of function really started to take a toll on my emotional well-being.  I started going to a psychologist to help with my depression and joined an online CFS/ME support group.

I was slowly recovering but I was still experiencing symptoms and flare ups every so often.

More diagnoses– Mast Cell Activation Syndrome

At the start of 2018, by sheer luck, I was put into contact with a fellow CFS/ME patient who also lives in Fort Collins.  She gave me invaluable tips and suggested I look into Mast Cell Activation Syndrome (MCAS).

All I knew about MCAS was that Jen Brea has it and that usually only people who get rashes have it.  But i was wrong.  I read “How To Bet Against Occam” and highlighted symptoms I was also experiencing.  My highlighter was almost out of ink by the end of the book!

After going to a doctor in Boulder that knew about MCAS, I had the blood and urine tests done and it showed elevated levels of methylhistamines, which is part of the diagnostic criteria for MCAS. So, I was put on H1 and H2 receptor blocker medications as well as a mast cell stabilizing drug to help with my symptoms.

After about a month of being on those medications I felt a lot better.  I had no clue how chronically inflamed I was until my inflammation actually went down.

By this point, I was nearing the end of my college career. I felt so much better than I had back in November, but no where near being functional.  I learned a lot of “life hacks” to cope with going to school, going to doctor’s appointments, and trying to have a life along the way.

Luckily, I found the Instagram chronic illness community during this time. Seeing other people my age going through things similar to me was really life-changing.  I had found camaraderie through these people I had never met before.  But we could relate in ways the majority of the people in my real life never could.

And another– Postural Orthostatic Tachycardia Syndrome

Through real-life and internet friends, I knew about Postural Orthostatic Tachycardia Syndrome (POTS) and the diagnostic criteria for it.  I never thought I had it because I would just get heart palpitations a lot from the Coxsackievirus so I was just used to weird heart rhythms.  Plus, I just thought my pre-syncope while walking was due to be being fatigued from my other illnesses.

However, one day I was lying down after a rough time walking home from class and I just decided to see what my heart rate was (from my heart rate monitoring watch).  It was 67 bpm.  And then I stood up, and my heart rate climbed up to 113bpm.  I was kind of shocked, so I put on my heart rate monitor chest strap to double check, but the same thing happened.

The next time I went to see my doctor, I brought this up and she confirmed my apparent suspicion.  I had POTS.  Since the symptoms were mild at the time (and there is a correlation between MCAS and POTS), we didn’t do much further treatment for this specific illness at the time. My symptoms seemed to flare when my MCAS symptoms flared, so we decided to keep treating my MCAS and just see what happens.

Moving onward (and upward?)

After finishing all my classes (not without much, much Benadryl, mind you) and finally graduating, I was so done. I just wanted to be comfortable and healthy again.

I had decided I would need to go back to living at home in Orange County with my parents after graduating because I needed to focus on my health.  I was super upset and depressed with this decision at first.  I felt like I was standing still (and even regressing) as all my peers moved on with their lives.

I had to change my plans, but I couldn’t help but feel so relieved to pack up my things and leave.  Fort Collins was good to me, but I felt like staying there would just make me more depressed and therefore more ill.  I needed a change.

So now I am back in CA, living with my parents and dogs.  And it’s been the best thing I could have done.  I have access to more specialists in my area and my parents can help me with more things in my every day life. I am the most emotionally stable I have been in quite some time and am actually hopeful and excited to see what the future holds.

This is reality

So now, here I am, many moons later. I am different.  I have a different life than I thought I would.  Does it suck? Yes.  Is it sad? Yes. But I have learned that dwelling on that makes it worse.

I’m not here to say that there is good in every situation, if you just look hard enough.  I used to say that, but I just cannot truly believe that after everything I’ve been through.  I am here to say that this is reality and now you must live it.  So choose wisely.

I can say that I have learned a lot about medicine and the medical industry.  I have seen doctors that care nothing more than getting you out the door and ones that cannot admit when they do not know.  But I have also seen empathetic, caring, and kind doctors that not help you with medications, treatments, and management, but they listen to you and care.  You just have to find the right ones (which is not an easy task).

I can also tell you that some people will not know how to treat you when you become chronically ill. Some people will be over-protective and annoying–offering the cure of the day.  Some will ignore your illness (and sometimes, you) altogether.  Some will not understand why you are experiencing what you are experiencing and just be super insensitive to your condition. But some will do exactly what you need, when you need it and stand by you, no matter what.  Those are the ones that are hard to find, but when you do, keep them close.

Through this health saga, I have learned lessons some people will never learn.  I have learned a lot about myself, people, and the world, and the intricacies of them all.  I think I have a better mindset towards challenges and difficulties and have a better appreciation for something I used to take for granted– good health.

What I hope to accomplish

Through this blog, I hope to help others find ways to life to the fullest that they can, no matter their setbacks.  Just because we have extra challenges doesn’t mean we are incapable of living full and meaningful lives//

-Mel

[Updated: 7/28/2018]

Advertisements