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.