We’ve been on a lot of journeys over the years, but my longest one doesn’t actually involve a destination, and has been going on for many years.

As some of you may know, our family has a history with Narcolepsy and Hypersomnia, which is a rare sleep disorder that has recently been suspected to be an autoimmune disease (because the brain is constantly attacking the hypocretin in the brain).  Myself and two of our kids have been diagnosed with it.  Most people with Narcolepsy can go undiagnosed for years because its such a rare disorder, and not a lot of medical professionals are familiar with it. This is why we are very big on bringing awareness to it.

My own medical journey started fourteen years ago, when I first started going downhill with medical illnesses. I was always tired, always hurting…not being able to function the way I used to be able to function. Because our boys were so young at the time, I was constantly beating myself up over not being the mom I thought I should be able to be. It was both frustrating and depressing.

After seeing numerous doctors and medical specialists, as well as several ER visits and tons of medical testing over the course of four years, there was FINALLY a name for this horrendous disease: Narcolepsy. I was given a new medication regimen, and soon I was feeling better. My sleep doctor told me that I would never be 100%, but at that point, even 75% improvement was a win in my eyes.

After years of tests, trials, and “maybe it’s this or that” from a slew of doctors, I feel like I know when my body is functioning at its peak level and when something is “off.” While I definitely was feeling better, I still felt like I wasn’t quite reaching that 75%. At times, I felt like I was lucky to even hit 50% of my past ability and functionality. When I would bring this to my doctors, however, I was often met with resistance (if not outright rejection). I’ve had doctors actually laugh at me and tell I’m crazy just because something doesn’t feel right doesn’t mean there isn’t anything wrong (then offer me my choice of antidepressants to keep me from feeling “down”).

That’s not to say that my Narcolepsy treatment wasn’t working. It was…for a while. Compared to where I was just a few years ago, I definitely was doing better for a bit, but over time, I was felt like I was going backwards health wise. Within five years of being diagnosed, I started to feel that extreme exhaustion and pain that I had felt initially. On top of that, I also started having these flight or fight episodes where I felt like I had these sudden and strong bursts of adrenaline.

Bringing all this up with my primary care physician, though, was met with the usual, “You’re fine. Stop reading online articles and take this antidepressant.” At one point I was begging for a high dose of vitamin D, knowing that not only was I experiencing ongoing bone pain, but that osteoporosis runs in my family and I was at risk due to having a hysterectomy at 29 because of endometriosis. Despite these concerns, I was again told I was crazy – my bones were fine there’s no evidence of bones hurting or vitamin D helping prevent osteoporosis.

That was when I realized that we as patients hire the doctors – they work for us, and they are getting paid by us (and our costly insurance). So I fired my primary care physician. I found a new primary care professional (a nurse practitioner) who was amazing – she listened to me, understood my concerns, and agreed that I wasn’t just depressed or crazy. She decided it was in my best interest to have a dexa scan based on my history and symptoms (although I had bone pain, a dexa scan was something that wasn’t even on my radar, as I was only 35 at time – WAY too young to need something like that!)

While I knew something was off, at the time, I was just seeking a higher dose of Vitamin D to help preserve my bone health. This new PCP, however, not only followed my lead and listened, but because she took me seriously, discovered that I had full-blown osteoporosis at age 35 – not osteopenia (which is the start of bone loss) but actual osteoporosis!  Had I not fired my former PCP, this would’ve gone completely undetected.  

It’s now been another 5 years, and here I am again – feeling…KNOWING something is majorly off with my body. I’m very, very lethargic. Extreme exhaustion is setting in quite often, which is a different exhaustion than my narcolepsy exhaustion (narcolepsy exhaustion is normally extreme mental exhaustion, like I just can’t collect my thoughts; this exhaustion is physical, in that I may walk from the kitchen to the bedroom and and be extremely tired physically).

If you look back through our pictures and posts on this website and our social media pages, you will see us frequently hiking over a mountain path or trail (regardless of the shape I may be in at that given moment). I’m not one to just sit – I am a naturally active individual who probably pushes herself more than she should – so when I say something’s wrong, you can rest assume that something is wrong.

And it seems as though a new symptom is added to the list on a regular basis. I get these headaches at the same time every day that would come with “floaters” (or spots) in my vision. I get this tingling and electric feeling in my hands and feet. There’s neuropathy in my feet. I go through bout of complete muscle loss/strength/stability.

Initially, I thought for sure it was MS. I brought up my concerns with my neurologist (whom I see for my narcolepsy), and she likewise was amazing, not just listening to me, but running multiple tests to either confirm or rule out MS.

As was becoming a very frustrating pattern, though, everything kept back normal! She finally said, “Lets do an MRI of your spine to make sure there are no visible legions” (a common symptom of MS). Sure enough (again) there were no signs of legions (although there was osteoarthritis in almost every vertebrae, which was not surprising).

So like before, I was referred to specialist after specialist. Between these appointments, I continued to experience even more symptoms – all of a sudden my fingers, toes, shoulders, hips all started hurting. I’m not talking muscle pain; I’m talking feeling like someone is filling my bones with air and squeezing them until they are breaking. It was so bad that it felt like my skin was being stretched as much as possible.

The first specialist was a neurosurgeon. While he agreed that my back was messed up, he didn’t feel it was enough to warrant surgery (specially since the majority of my pain was not. In my back, despite the obvious indications on my MRI). He also agreed that there was something else going on (beyond just pain) and recommended that I see a rheumatologist.

“Good! maybe we are on to something here!” I thought. After all, several years prior, I had a rheumatologist run tests on me (to my former PCP’s chagrin), and the inflammation levels were indeed rather high. This would be a new rheumatologist, so the appointment would be several weeks, but I could live with that if it meant getting answers.

While waiting for this appointment I again had a really bad flare up of…something. I couldn’t move for a whole week. I was in so much pain and had no energy to even hold my head up.  I literally felt like I was dying a slow excruciating death. It was like the flu times 10 without the sickness part.

Kyle, watching these symptoms continue to mount up, decided to contact my primary doctor and ask for blood work to be done right then while I was experiencing this flare up (kudos on the quick thinking there!).

These most recent tests included a lupus Ana test, which came back positive. It may sound like a strange thing to celebrate, but we did, because it meant that we FINALLY were starting to get some answers regarding my symptoms, as well as to validate my not feeling normal and something is wrong (beyond just being crazy!)

When I arrived at the rheumatologist’s office, my spirits were high. I’m finally going to get on the right therapy to help me stop the progression of this disease and hopefully help me start to feel better, right?

Wrong!

This doctor was so rude and condescending. She started by dismissing everything I said, whether it be a symptom or a concern, by saying that it was either not a “regular” symptom of an autoimmune disease or that it was “out of my realm.” I felt so defeated. I went from excited about getting answers to back to being treated as if I was just crazy. I was so upset that I broke down crying right there in the exam room. To try to appease me she, begrudgingly ordered more blood work (including repeating the same tests that had just been done a couple weeks prior).

Part of my frustration was that this doctor was focusing ONLY on the fact that I was in pain. She didn’t care where the pain was or what might be causing it; she simply said, “Oh, that’s doesn’t sound like this or that, so let’s just try to treat the pain itself.” 

Now, I can deal with a lot, and I’m no stranger to pain. I can just power through pain. Even exhaustion has become just part of my life. What was really bothering me, though, was that I was also losing my mobility. The pain and exhaustion was leading to my inability to even move. Pain and exhaustion? I can manage that. Loss of mobility? That’s where I draw the line. I refuse to be immobile.

I was left with a decision to make at this point. Do I fire yet again another doctor? And what do I do in the meant time? Over the next few weeks, things continued to nose dive. A good friend of mine invited me to a concert (the Prince Experience – highly recommended!), and while it was definitely fun, I probably spent a week in recovery mode. I don’t mean tired or sore; I was essentially bed ridden for close to 6 days. You can’t convince me this is normal, not for a 40 year old anyway.

While I debated my next steps, I realized it had been a year since I had my endocrinologist for my osteoporosis. Maybe she might be able to help or at least point me in the right directly. I mean, what can it hurt right?

Well apparently God was listening to my prayers because not only did she listen to me cry my eyes out (again), but she actually said that I may need a 2nd opinion with a different rheumatologist. That gave me the answer I needed to fire the first rheumatologist, as well as the validation that yes, there really is something else going on here.

The new doctor was AMAZING!!! I was able to book an appointment within a couple of weeks, and she was very compassionate and empathetic. She also ordered more blood work, only this time, it was EVERY possible test (34 in total!). She also prescribed a round of prednisone, which worked amazingly well within a week.

As these tests continue to come back, it is becoming increasingly clear that my issue is related to lupus, polyarthiris and myosits. At long last – ANSWERS! All of the major medical issues i was having finally started to make sense! Even issues that I didn’t even think were connected (such as hair falling out in clumps, constant mouth sores, acid reflux, rashes and hives from the sun) can all be tied to lupus.

And that prednisone that was prescribed? It has been a life changer. I’m no longer in immense pain. I have energy again. I can hang out with friends, or even just get stuff done around the house. I am starting to get my life back!

I now go to all of my doctor’s appointments armed with all my medical history. The ones who really care (and will listen) will appreciate not only the time and effort, but the seriousness of my concerns (and the ones who don’t will easily dismiss it, which gives me all the information I need).

So, why am I sharing all of this? For starters, May is Lupus Awareness Month (and today, May 10th, is National Lupus Awareness Day). To say that I am aware would be an incredible understatement!!

I also want to encourage those who maybe feel like they’re not being heard, especially by their doctor or primary care professional. It’s YOUR body. YOU are the one who lives in it. Listen to your body’s when something isn’t feeling right! Be an advocate for yourself! Keep records of your past visits and test results, and bring them with you. Bring your concerns to their attention, and don’t let up until you get the answers you are looking for.

As for me, I finally feel like I have a path forward. So much of this particular journey has been without a map, without direction, and at times, just going in circles. But I’m not one to give up, nor am I one to just go home disappointed. I’m thankful for the doctors who have listened, helped, and guided this journey. They have given me the opportunity to continue with the types of journeys I enjoy the most.