On being social…

I did a thing where I got to go to a party at my new neighbors house.

My new next door neighbors invited a bunch of other people from the neighborhood who were equally awesome to come over for some food and fun.

I’m always a bit apprehensive to meet new people who never knew me as a well person.

Wait, let’s be honest. This is one of the first times in all of being sick that I’ve actually gotten to meet new seemingly non-chronically ill people.

I get nervous about these sorts of encounters with real live in person human beings. Mainly because any new friends I have are actually virtual sick-friends. They’re pretty cool, but even if they live in the metro-Atlanta area they might as well be half way across the country most days.

The thing about new in person friendships is that it leads to polite conversation that often includes friendly innocent questions that now feel completely loaded.

Let’s role play, shall we? You play really nice unassuming polite human being. I’ll play the chronically ill nut job in a wheelchair.

Ready? Action.

You: "Do you do anything outside the home?" 

Me: Well, not usually but if I'm lucky I get to go to Target every now and then. 

You: "What do you do for a living?"

Me: Mostly I pride myself on converting oxygen to carbon dioxide. And sleeping. That's always nice.

Me: Oh you love hiking? Me too! 

You then have a look of confusion quickly pass across your face "wait, aren't you in a wheelchair?" and then try to pretend like you didn't look like you just had that thought.

Me: I mean I used to like hiking, but now I have this illness called goblydogosplatitis (aka, what people think you've said the first time you say Myalgic Encephalomylitis) but you have have heard it called Chronic Fatigue Syndrome.

You: "So you're too tired to walk and you use a wheelchair, crazy lady?" 

Me: Uh...no not quite but can we avoid long discussions about my medical history because I'm flipping excited to be out of my house today.

You: "Where is your kid?"

Me: Oh she's with my parents and the rest of my family at the beach, but I'm too sick to travel. 

(Cue the awkward silence)

End scene.

But what was best about this particular gathering was that all my presumed fears of answering these questions never actually happened. In fact, everyone treated me like a normal human being. Which, I like to think I still am.

Plus, everyone sort of had their own thing. It was a diverse group of people in age, culture and life stages. Each family with their own hurdles just trying to do their best in this journey called life while shooting the breeze on a balmy Sunday afternoon in Marietta, GA.

Hopefully it’s the start of some beautiful friendships. And hopefully I’ll continue to be healthy enough to actually call them friendships in the future.

But mostly, I just did a thing today with other actual human beings, live in person where we hung out and had real face to face conversation about something other than illness. It was awesome, and for today, that’s enough.

 

The Rheumatologist

Credit: ME/CFS Memes

Oh, hi. Have you noticed I’ve been avoiding posting about my rheumatologist?

Truth is, this was probably the most emotionally and physically damaging appointment I have ever endured. It takes a really good day for me to organize my thoughts and write a blog post. So why would I waste a perfectly good day thinking about something that makes me so upset and angry? Well, because it’s an important story to tell and not many people are share their story, even though my story is so far from unique.

Thinking that I’ve likely villanized my memory of said doctor just a little left from center I went back to the email that my husband Stephen sent me with notes about the appointment. I was surprised to find I really hadn’t exaggerated my memory. The doctor was just that clueless.

First, let me say that many doctors will often diagnose chronic fatigue as a symptom, not a syndrome. It’s just another example of why “Chronic Fatigue Syndrome is a really crappy name for this illness. That is exactly what he did. The notes say:

“You do have chronic fatigue. You have this. Sleeping tired. You’re tired all day. That you have”

I’m pretty sure I’ve covered that chronic fatigue syndrome is NOT in fact being tired.

In case you forgot or haven’t read my post explaining what ME/CFS is,  here is the CDC’s description of ME/CFS and here is a link to my original post.

One of the biggest problems in the diagnosis and treatment of ME/CFS is that doctors are most often NOT taught about it in medical school. Not even rheumatologist who are often the specialists you are referred to when you have a suspected auto-immune disorder.

Among my negative blood work, one thing I did show was a positive ANA titer. This is often an indication of auto-immune and neuro-immune disorders, but despite the fact that both my dad and my daughter have auto-immune/nuero-immune disorders my one positive piece of blood work was not enough for this rheumatologist to consider that I had anything of biologic consequence going on in my body.

Nope. My chronic fatigue and fibromyalgia were because of my chronic anxiety. In other  words, my symptoms were caused by a psychological condition. Nevermind that my depression and anxiety have been well controlled for YEARS and this all started when I was having the absolute best time of my entire life!  From here on out, I have been afraid to admit to anyone (medical professional or not) that I have ever had any history of depression, anxiety or any disorder phsycological in nature. With additional stigma regarding mental health disorders, admitting my history of mental illness just gives you or anyone else an easy out to consider me plain flat crazy at worst, and lazy at best. I am only speaking honestly here because I promised for the sake of myself and others that I would be transparent in the journey of my illness. And remember, you promised that if you read my blog, you would be honest in your attempt to believe me.

In the end, the treatment the doctor ordered was exercise. Excercise is key, he said. Get your tired self out of bed, he said. Go to work, he said. There is no reason you can’t do anything any other 32 year old woman can do, he said. Push yourself through to add a little more vigorousness to your exercises each week, he said.

As a side note, I would like to refer to that link from the CDC on the treatment page for ME/CFS is to avoid pushing and exercise. Mind you, Dr. Rheumatologist wasn’t diagnosing me with Chronic Fatigue Syndrome…he was diagnosing me with chronic fatigue. Chronic tiredness. And to further excuse his ignorance, the CDC didn’t even update this recommendation to avoid graded exercise therapy (GET) until AFTER this appointment in June of 2017. This is why advocacy and education in this illness is SO important. Not knowing what to look for to adequately diagnose ME/CFS not only prolonged my journey to any effective treatment, his recommendation for GET would actually HURT me in the long run.

But I didn’t know that at the time. GET and an anti-inflammatory were the only treatments he offered. Beyond that, he actually told me to Google chronic fatigue and fibromyalgia because people had found alternative treatments that worked for them.

That’s right folks. My doctor with the expensive, years long education literally told me to GOOGLE my illness.

Perhaps that should have been my red flag, but still trusting in the healthcare system at the time, I began to believe he might be right.

Maybe I am too anxious or too stressed. Maybe I do need to push myself to get out of bed. I had been depressed before, and although this didn’t feel like depression, maybe it was and I needed to push through. So per his recommendation I began doing water aerobics at the local community aquatic center. Although, I was too weak and too easily exhausted to take the actual water aerobics class. So I went on my own for 30 minutes doing what I had learned in my previous life when I took water aerobics.

For two solid weeks I gave this a try until I could no longer. My life became wake up, put on bathing suit, go to pool. Come home, crash in bed. Recharge enough to wash off the chlorine and try my hardest to stay awake until bedtime so I could “practice good sleep hygeine” as he suggested.

Instead of getting better, I got sicker.

And so I once again followed his advice and googled “chronic fatigue” and that is where I first learned of Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome”. That is where I learned about Post-Exertional Malaise (PEM).

About that time a church friend virtually introduced me to a someone who had very similar struggles to mine. Her name is Sarah (and since my daughter is also named Sarah, clearly, this gal was going to be awesome). She is amazing and has positively impacted my life in ways that are worthy of their own post – so more on Sarah later. She revealed to me that she had formally been diagnosed with ME/CFS and that her story was remarkably and heartbreakingly similar to my own. I cannot thank her or my friend Kate enough for connecting me to her. I am not exaggerating when I call them both life savers.

A month later Jennifer Brea would release her documentary entitled “Unrest” and I would discover a world and a community that I belonged to that would open my eyes to understand that the health care industry does not in fact know everything. Sarah and I are not alone. In fact, we are just two of a startlingly high number.

Unrest is available to stream on Netflix or for purchase on almost any digital platform, on blue-ray or DVD. If you do anything to understand this illness better, watch this documentary. Oh, and if you do – as you watch it, let me give just one shout out to my wonderful, supportive, kind and loving husband Stephen. He is the Omar to my Jen. I am beyond blessed to have a love like they share. Though we both skipped chose not to try the hookworms.

(Now you’re really curious, aren’t you?)

#millionsmissing May 12, 2018

I’m taking a break from my diagnosis journey to reflect on what I am missing as the #meAction #millsionsmissing campaign starts to kick into high gear.

It just so happens, we’re also moving to a much more accessible one level house. Part of that means downsizing and part of downsizing means culling the mound of useless crap we own in order to fit in the smaller house.

Getting rid of useless crap means reflecting on what is useless crap and what I might wish I had kept if I get better.

Yesterday, I went through a big chest of all the resources I had collected for when I went to seminary for church music. Before my husband became a pastor, I worked as a church musician at several churches as we bounced around the Lutheran candidacy system. When it came time for his first call, I told him to take what he could and one day I would come back to church music at a time when we could serve at the same church so that once we had children they wouldn’t have to choose a community between the two of us. I had my time serving my call, it was time he had his.

I was happy working in the sewing industry, but when I took a break and sold LuLaRoe I had decided I really missed my vocation as a church musician. We have a fantastic church musician, Helen Phelps, at my church, Lutheran Church of the Resurrection (LCR) and she was an absolute joy to collaborate with on a volunteer basis. We had so much fun together. We had even started to dream and scheme together about perhaps expanding music ministry at LCR and working together.

At the same time, a dear friend of mine asked me to come to Asheville and run a clinic on healthy choral singing and choir as a small group ministry. It lit a flame in my belly. From then on, I thought, this is what I’ll do. I’ll be a clinician on my own terms working when I feel well. I’ll work part time with Helen consulting and doing the odd bits we needed to expand music ministry at LCR until I could propose the need for a second paid position to church council.

The last time I made it to church was Reformation Sunday, in October of 2017. Helen had asked me to come conduct the choir for a special anthem.

At that time, I knew nothing about  how ME/CFS affects your entire autonomic nervous system. I knew nothing about heart rate elevation in relation to fatigue. I had yet to make my way to the Hunter-Hopkins Center in Charlotte, NC where I would find out that my body puts itself in oxidative stress quick enough to be considered moderately disabled by the American Heart Association.

Upon Helen’s suggestion I agreed to conduct from a stool and I must have looked like crap because several men helped me walk down the aisle and others carried my stool, my music and my stand.

I was already furious at myself that I couldn’t wake myself up in time to conduct the early service so I only conducted at two services instead of three, but Helen and the entire choir were so gracious to me.

The first round, I made it through with my arms shaking and my heart beating out of my chest, but it felt glorious and the choir did tremendous. It wasn’t nerves. I was that weak.

The second time, I don’t really remember anything. I knew nothing about post-exertional malaise at that point either. I figured since I sat down the rest of the service before that I’d be good for the next go around. Instead, my heart pounded even faster, my arms felt like they had 50 lb weights on them, it became difficult to breath.  Tunnel vision started to set in. I’m not sure how I didn’t pass out other than the grace of God.

I haven’t been able to attend a service since then.

So, when I was looking at all my resources for church music, I had to ask myself…should I really keep this? Will I ever work at a church again? Will I ever be able to hold my arms up long enough to shape sound again? Will I ever be well enough to consistently attend church services enough to actually plan and play for them again?

I’m really not sure, but my husband Stephen encouraged me to hang on to everything. Then he came home and showed me this:

#canyouseeMEnow protest signs that Helen had everyone involved in music ministry hold up for a visibility action for #millionsmissing to show support on my behalf.

She sent out an email asking everyone to come ready for their photo op to raise awareness for Myalgic Encephalomyelitis because if not for ME, I would still be involved in music ministry in a major way at LCR.

I often wonder what Helen and I could have done together with the people involved in music ministry at LCR. We would have been a force to be reckoned with together with the people of LCR, raising one heck of a joyful noise to the Lord, that’s for sure.

I’m one of millions missing that are often forgotten or forsaken by the healthcare industry. Today, everyone involved in music ministry at LCR all made a point to tell me that one in a million, me, makes enough impact to raise awareness for everyone else. Every one person in a million makes a difference. Every one person in a million is worth fighting for.

Yeah. I think I’ll hang on to my music after all. Apparently, there are a bunch of people who haven’t forgotten and are fighting for me to come back.

I’m not crying. You’re crying.

A neurologist, a pulmonologist and a rheumatologist

walk in to a bar…

At least that sounds like the beginning of a bad joke, right?

I have been avoiding updating the blog anymore. I did not realize how many difficult emotions I would drudge up by telling my story. But, as we come closer to May 12, an international day of #millionsmissing to call attention to the lack of funding and education surrounding ME/CFS, I find it more and more necessary to continue telling my story despite all the ugly crying that ensues of facing how completely wrecked my life has become.

After the neurologist was quite certain I did not have Multiple Sclerosis, my PCP (primary care provider) sent me to a pulmonologist for a sleep study. After talking to that doctor, he seemed confident the sleep study would show I was narcoleptic and that could also explain my cognitive difficulties. He ordered a night-time study, followed by a day time study.

The room where my study was completed was quite nice. It was set up like a hotel. Honestly, the electrodes stuck to my head weren’t as uncomfortable as I thought they would be – certainly not as uncomfortable as sleeping on curlers or the rags I used to tie in my hair for curls. The worst part was that they only let me sleep for eight hours. That poor technician should feel fortunate he was not a family member. I may have wanted to throw things at him and shout expletives in his direction. I was NOT ready to wake up. The day time sleep study proved to be even more torture.

For the day time study, I was to do anything I could to keep myself awake for two hours until I would be given a chance to rest for fifteen minutes. I couldn’t lay in the bed despite the fact that the TV was actually centered to the bed and not the uncomfortable chair I had to sit in between naps. In my delirium, I began to feel like the bed mocked me while I craned my neck to watch the TV so beautiful centered in front of the bed I couldn’t sit in. Every two hours I would lay down and fall asleep just as it was time to wake up again, and each time I woke up with a headache of increasing intensity.

I would not wish this kind of sleep study on my worst enemies.

The nice thing was we got the results pretty much immediately after I was finished.

The not so nice thing was that they were completely inconclusive. I had even managed a deep sleep during the night, something most patients don’t do when sleeping in a weird place with electrodes stuck to their head.

God love that pulmonologist though, he was downright pissed and a bit flabbergasted that he was wrong and my results were inconclusive. Me too, buddy. Me too.

Time for the rheumatologist, then. This is the story I hate telling the most, but it’s a classic example of the story millions of PwMe (Patients with ME) will tell you.

Continue reading A neurologist, a pulmonologist and a rheumatologist

The End and the Beginning Part 2

By the time the latest battery of tests came back from naturopathic doctor in early March, there was still nothing conclusive to suggest any illness. She refused any referrals and told me to keep on my current supplement regiment and call her in four months.

FOUR MONTHS?!

Was she listening to me? Did she understand I was practically bed bound? No referrals and just suck it up for four months?

My husband Stephen was over it and so was I. From now on he would attend all doctors appointments and become my biggest advocate. So, later that month we ended up in front of a general practice doctor who continues to be the biggest breath of fresh air in the health care system we have ever experienced.

<<I have not asked this doctors express permission to mention him by name in my blog. I am abbreviating his name for privacy sake. If you wish to know more about him and his practice, please reach out to me directly at friedrichbw@gmail.com>>

It’s always a riot (and by riot, I mean amusing if not down right hilarious) when I show up with my husband at a doctors office. He is a Lutheran pastor who almost always wheres a black clerical collar when he is working and because most of my appointments were in the middle of a work day, he often showed up dressed in said garb and this appointment was no different. Inevitably, we are frequently passed by with nods of acknowledgment to him and a greeting, “Hello, Father.” Let’s just say that even the smallest displays of public affection at this time become a delightful source of entertainment for the two of us, but I digress.

One thing was immediately different about Dr. W. He took time to get to know us both and even shared a bit about himself. His wife is apparently also a pastor and while I was a little annoyed when the appointment turned into a theological discussion with my husband, (Uh, hello, we’re here for me, I’m sick…) it was also endearing to be treated like humans instead of a grand science experiment.

After explaining from the beginning how all this started with foul piano playing, infections, lots of unrefreshing sleep and profound fatigue, Dr. W quickly zoned in on fibromyalgia.

I was not immune to the idea. Weeks of waiting for tests to come back had led to black holes of youtube videos and Dr. Google, and fibromyalgia had certainly come up on that list. I continued to plead though, “Let’s run some more tests.” There has to be something auto-immune going on, it runs in my family, and not just with my daughter!

To my surprise though he was less concerned with inflammation and clumsy fingers and more concerned with the possibilities of multiple sclerosis.

It wouldn’t be until much later that I discovered numerous articles that point out the many similarities of ME to MS. (If you are interested, click here and scroll down the article for a handy chart that shows just how many similarities are present.) Happy to have an avenue to pursue, we made an appointment with the neurologist and to our surprise, got in fairly quickly. 

In the meantime, my business continued to suffer. While I experienced a small relief in symptoms, it was all I could do to continue to plan another multi-consultant sale that I had already put on the books. Thankfully, with the help of some friends and fellow consultants we managed another multi-consultant sale though not nearly as successful as the first and I blamed myself considerably, despite my friends support. I couldn’t sustain any sales beyond these events which was the only thing keeping my business afloat. With no idea of why I was sick on the horizon, I was hanging on to my business by a thread.

Much to my dismay, I began to experience the definition of a crash and what patients with ME/CFS refer to as post-exertional malaise in a big way after that multi-consultant sale.

To make it all worse, the neurologist appointment was anti-climatic with a fairly certain determination that MS was not a diagnosis for me. At this point, I wasn’t sure if I was relieved or pissed off, to tell the truth.

Shortly there after, I found this TED talk by Jennifer Brea and the beginning of the possibility my new life started to swirling in my head. But surely, what this woman was experiencing wasn’t what I had, I mean…I was not THAT bad…yet.

 

 

 

 

The End and the Beginning – Part 1

In October of 2016, I was a fashion consultant for the company LuLaRoe and if I can humble brag for a minute, I was REALLY good at it. So good in fact, I was invited to fly out to California to a leadership conference in Pasadena, CA as a consultant who showed promise in sales and team development. Say what you want against all the negativity about multi-level marketing brands and the ability to make a living wage – I was a success story. I came home from the conference on fire and ready to take the world by storm.

Except I got a cold when I came home.

I recovered and started hitting the pavement. I went in to Black Friday with fierce eagerness and started to plan a multi-consultant event in a prominent shopping district in Atlanta’s Buckhead.

And then I got another sinus infection.

It was starting to look like a pattern. One rocking week of sales and planning followed by two or so weeks of infections.

I started having trouble keeping myself organized. I couldn’t seem to follow my own proven method of selling, invoicing, packing, shipping and processing returns. I was working in circles because my brain just couldn’t seem to hold on to any information. Sometimes I stared at the computer screen minutes at time trying to make sense of what I was seeing. I began to fear logging onto Facebook to find my message inbox full with customers saying I’d forgotten to include an item, or a return credit wasn’t reflected on their invoice, or a question about a tracking number for a shipment I could have sworn I had sent out, but didn’t.

I blamed it on my ADHD. Time to up my stimulant.

About that same time, I was practicing with our church music director to play keyboard duets for the Christmas Eve service. Sometimes I would show up and despite all my individual practice my fingers were stiff and clumsy. My fingers almost refused to play what my brain was telling them to play despite the fact I had done it numerous times before.

So I made a mental note – maybe you should get checked for arthritis. My daughter was currently in treatment for juvenile idiopathic arthritis and she was responding really well. Maybe I was the carrier. So I made an appointment that January with a naturopathic doctor that several ladies from my church recommended.

Christmas came and went and despite my clumsy fingers I managed to pull the duets off fairly well. We traveled home to Knoxville, TN and I decided to take a break from online sales with LuLaRoe. Maybe I was just taking on too much with this big multi-consultant sale and Christmas festivities.

We came home from Knoxville and I once again had an awful viral infection. It settled into my chest and I could barely breathe. I went to urgent care to discover while I didn’t have pneumonia, I had a really bad case of bronchitis and pretty much everything from my chest up was infected. Steroids, breathing treatments and antibiotics were prescribed and I was glad I had that doctors appointment on the book. Clearly something has knocked my immune system back. Maybe it’s the arthritis, I thought to myself. They did say my daughter could have a compromised immune system when she was first diagnosed with a low white blood cell count.

I recovered from the bronchitis but my body was wiped out. I was super tired and my limbs felt heavy, like they were made of lead. This must have been one heck of a virus.

I continued to make mistakes with my sales. They were declining and I was having to get my husband to help me process orders. He would get infuriated at the mistakes I made. “How did you manage to miss all these?” he would say, or “why didn’t you get this out already?”

I didn’t have a good answer so I blamed it on this being the first time I was planning a huge event. It would all be ok I told him, this same style event made over two months worth of sales in one day for the consultants that did it in NC.

I was still blaming all the mistakes and cognitive difficulties in my business on my ADHD. We’re notoriously bad at executive functions. Maybe I was just meant to be the grand schemer, dreamer, seller and motivator-the face of my brand. I promised myself would grow this business and hire someone else to do these small tasks I had trouble with.

My appointment with the naturopath doctor finally rolled around. I mentioned all of the infections but was mostly focused on my fingers and my inability to play piano at times and a little trouble concentrating. The doctor agreed to run a battery of tests and I contacted my psychiatrist to increase my stimulant. Hopefully that would help me until I could hire that assistant.

The week before my big multi-consultant event, my blood work came back and I went for a follow-up with the doctor to discuss the findings.

The blood work was normal. No red flags for inflammation. My white blood cell count was on the low side of normal, but I’d been sick all fall, so that was to be expected. My iron was good. My thyroid levels were “textbook perfect”. There was no reason for me to still feel the lingering effects of fatigue from that bronchial infection. She was a naturopathic doctor so she recommend we run some more extensive blood work on heavy metals, food allergies and mold while altering my diet and eliminating some foods. Once those tests came back we could refine my diet and add some specific supplements that would have me feeling great in no time.

Then my event happened. It went great. I had more than a months worth of sales and more than that, I’d helped twelve other girls do an equally grand amount for their own business. I was on top of the world. I was financially contributing to my family. I was the most confident in mind and body I had ever been and on top of it all, I was helping other women reach their potential.

Then I got sick again. Only, I had no respiratory symptoms. I just slept. and slept. and slept some more.

After two weeks of what felt like sleeping around the clock, I finally called the doctor. I can’t live like this, I told her. I have a business to run, a daughter to keep and a husband to tend to. She told me it would be another two weeks before the tests came back. If my body was telling me to rest, she said, I needed to listen.

I was worried and frustrated. Yes, let’s get a good nights sleep, sure. But I was sleeping upwards of sixteen hours a day. Surely, that wasn’t normal. Surely, she can’t just expect me to lie down and do nothing while I wait for tests to come back.

But that’s exactly what she had me do. Tests came in one after another. No food allergies. No mold allergies. I did however have high levels of arsenic in my blood, but she couldn’t equate that to my massive amounts of sleep. She ordered another test.

I would spend a total of eight weeks in bed between periods of sleep and debilitating fatigue popping a few supplements and waiting for more tests to come back.

My husband, Stephen, became increasingly concerned and pushed me to go to a “normal doctor”. My business tanked but I had another multi-consultant event on the books. If I could just recover in time for that – all would not be lost.

I had no idea my life was about to be turned upside down. I never dreamed I would be writing a blog post over a year later still sick. I certainly never expected I would be diagnosed with a chronic life-long illness with no known treatment.

This was just the start of the road to a diagnosis and the end of life as I knew it – a life defined by success and career and the strong woman I thought I portrayed behind that veil.

Boy, was I in for a ride.

Myalgic en….come again?

Photo Credit: teaologist.co.uk

Yes, myalgic encephalomyelitis or ME. You may have otherwise heard of  Chronic Faituge Syndrome or CFS. Perhaps one day I’ll explain to you in detail how the rest of the world uses  a diagnosis of ME while some conglomerate of US doctors in the 80’s gave us an ill-fitting name like Chronic Fatigue Syndrome that constantly mocks our very existence. (I don’t have a “flare” for the dramatic – see what I did there?) An existence that has more similarities with Multiple Sclerosis than feeling a little tired except we don’t have a tidy CT scan to prove we’re not crazy. This is why you often see those of us diagnosed with ME refer to the illness as ME/CFS. But believe me when I say there is plenty of other fodder on the injustice of the name CFS if you wish to peruse the issue elsewhere on the interwebs. (Like here, or here)

For me, life with ME started in December 2016 after a string of infections that fall. My life would change almost immediately no matter how long I tried to hold on to my previous existence. Since then, I have gone to one of the premier clinics for ME/CFS in the country, the Hunter-Hopkins Center in Charlotte, NC. Even still, a diagnosis of ME is typically a diagnosis of exclusion. A diagnosis with no biomarker, no cure and no treatment. A significant amount of patients are bed bound, home bound or meet the clinical definition of disabled as defined by the American Heart Association.

Typically patients are treated with symptomatic medication and life style changes that allow them to recover in part and a few in whole. Even still, recovery or remission is exceedingly rare – less than 5% – and for those who are able to see a positive change in their functionality it can take years.

The other day I was chatting with one of my dear friends when he asked, “So, how are you adjusting?” It was a refreshing question. One that was as honest and raw as I felt. One that honors that there are bad days, good days and in between days. One that honors that this is a complete 180 in lifestyle that isn’t going away.

“To be honest?” I said, “Somewhere between ‘my life is a total shitfest’ and ‘this isn’t so bad.”

So, I promise to be honest and take you on this ride if you promise to believe me. But I can’t promise it will look like pretty. I can’t promise it won’t be salty and raw or contrastingly hilarious. But I can promise you I see God working in the midst of it all.