If you’re just joining this series, I’ll catch you up quickly. Five years ago, this month, I came down with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), a.k.a. MECFS. It’s been a rough road to put it lightly. If you feel like catching up here are Parts One, Two, and Three. Next Tuesday will be part Five and that’ll be the end of the series. As I shared in Part One, I often skim the surface in blog posts about my illnesses as I don’t want to bring other people down. I also realize other people have it much worse, so I try to count my blessings, often. But this month, here in these posts, I’m sharing my truth, the good, the bad, and the yucky. I’m not delving into my detailed symptoms because there are over 100 and my energy levels are low so I’m just writing about what happened to me as person, navigating chronic illness. I’m pulling the content from my old blogs, and from charts I’ve kept so that I can keep up with all the doctors, diagnoses, medications, and side effects. In August I’ll go back to my normal posts but I’m hoping after unpacking my journey this month it will make for a lighter load going forward. Today I’ll cover 2017, the year of change.
Up until 2017 I was treading water, but I wasn’t getting anywhere. I felt adrift, alone, incredibly frustrated with health care professionals, who were mostly giving me the shoulder shrug. I don’t know if I started fighting harder, or I was like the mosquito in the tent, but eventually people started to listen, a little. In January the ENT sent me for vestibular testing. The original neurologist, before I knew what my diagnosis was, wanted to send me for this testing too. I felt like it was just too much to undergo so I opted out (and I really thought I would just get better), but out of complete frustration and desperation this time I decided to go. It was the single worst experience I’ve had. I’m not sure how long it lasted but for most of it I was experiencing heavy vertigo and it was just downright awful. In the end, I was told I have vestibular disfunction of not only the inner ear, but also my central nervous system. When I asked why, I was never given a straight answer, but I don’t have Meniere’s (which is treatable), so as I understand it it’s not fully treatable. As awful as it was, I finally had a diagnosis, that stemmed from a test, that explained what in the Sam hill was causing me to feel drunk, and off balance, as well as so many other things. The doctor prescribed me physical therapy as a treatment. I did go, but it was before I had a wheelchair and it was in the inner part of the hospital, so by the time I was finished I was taking way more from my body than it had to give. The last session I had they wheeled me out as I was absolutely exhausted. Just like the last PT experience, my labs started to go way out of range, but this time I ended up in the ER. I requested a transfer to another location that wasn’t deep in the heart of the hospital, but a spot never opened up and I never pushed further, because honestly the PT was making me feel worse, it wasn’t helping AT ALL. I think if that was someone’s sole diagnosis maybe it would help but I had way too much going on to put my body through that experience.
The flare that proceeded the PT was too much, I was pretty sure I was dying. One of my symptoms is feeling like I’ve been poisoned, I wouldn’t go to the DR for that, but this time around my heart was all over the place, so my son took me in. They ran an EKG, then another, then another (they ended up running six!). The nurse left the room, and when she came back, she said I needed to go to the ER, but they didn’t articulate why. (This wasn’t the first time in the last several years I had an EKG run and a doctor has said something was wrong but wasn’t sure what.) The Dr’s office said they would either call me an ambulance, or my son could drive me. My son and I opted for him to drive me, but on the way out the door I asked if I could have a copy of the EKG. They said I didn’t need it. I knew in my gut I did, but I was also terrified. We arrived at the ER, told them why I was there, they took me right back, ran several tests, and put me in a monitoring room. The Dr. came in a couple hours later and said, “Everything looks fine.” As any chronic illness sufferer will understand, I’m half relieved, half frustrated. I ask him what he would do if I was his sister, what would he recommend, and he says…. find a therapist and then he recommends Lexapro. WHAT?!?!? I’m here because my Dr sent me, I’m not have an anxiety attack!? I asked him what else he would recommend because I have a therapist and he said well a good Dr and a new rheumatologist. On my way out I ask the nurse if I can have a copy of my labs – you know the ones he said were fine. They were not fine! I was showing all types of abnormal readings, but according to him, I was fine and should see a therapist. I was too fatigued to take it up with him, but I can honestly say, these days I would have handled it differently. And word to the wise, always get a copy of your test results on the spot if you can. If nothing else, you and your health care team can use them to compare to future tests.
Obviously, it was another really bad flare. Live and learn, do not go to the Dr when you are flaring, they will send you to the ER, and the ER will tell you per tests you aren’t dying, so it must be all in your head. I haven’t been to the Dr or ER for a flare since. Which is the exact opposite of how things are supposed to work, right? You get sick, you go to the Dr. Not with this illness. Unless your body organs are failing, you wait it out at home, that’s our reality. I’m not being dramatic, this is literally the island we end up on.
In an effort to follow the ER Drs advice I asked my PCP for a new rheumatologist and my PCP recommended a new cardiologist. After having been schooled by fellow chronic illness people on social media I came to the first cardiologist appointment armed with my home blood pressure readings, a list of my symptoms (I use this list and cross off the 13 symptoms I don’t have on it), and a little back up literature (proof the MECFS is real and the correlation between POTS and MECFS). (On a side note: I keep these things in a flex folder along with other pertinent information incase I do end up in the ER again and usually take the folder to Dr appointments.) He was nice enough but told me that postural orthostatic tachycardia syndrome (POTS) is a “speculative diagnosis” and that he doesn’t believe in it. When I gave him my list of symptoms he said, “Don’t give this to people they will think you are crazy. It’s overwhelming.” I looked at him and said, “Yes, having all those symptoms is overwhelming.” Needless to say, that was that with him. As far as the new rheumatologist… it took eight months to see someone. My insurance kept referring me to UCSD, and UCSD refuses to see MECFS patients through their rheumatology department (frustrating because they are studying MECFS and have published findings). Eventually insurance figured it out and got me in to see someone outside of the UCSD system. And that opened up a whole new can of worms.
The first time seeing the new rheumatologist went okay, I’m not even going to go negative here, I could, but I’m just not going to. Basically, he said I have severe FM, CRPS, and osteoarthritis. He’s filled out paperwork for me for free while the other doctor charged me A LOT. He signed the document so I could get a handicap placard and has genuinely tried to help me with pain management, but I’m receiving zero MECFS treatment. I tried to get in to another rheumatologist through my insurance and they just keep sending me back to UCSD (just happened again last month). I can’t remember if it was the second or third appointment with this Dr, but I ended up seeing a different Dr in the same group. He ran so many tests, so, so many. Tests that even when I research them, I still have no idea what they are. And a few of them came back out of range, but here’s the kicker. I never saw him again, and my Dr didn’t know what the tests were for, nor has any Dr since. I asked to see him again or for him to explain them, nope. To this day I have no idea what they were for and since my PCP isn’t actually a doctor and other specialists don’t specialize in whatever the tests were, I’m left waving in the wind. At one point my PCP looked them over and offered to do a phone consult with another rheumy to figure out what they were. Then she decided to do the consult without me. No answers. One of them was a marker for cancer, it’s positive but just a little. So, they do nothing. Two years later, no explanations, no answers, and a creeping up out of range ANA level, but no treatment of further testing. When I’ve said previously my bodies is failing me progressively, it is, it’s on the labs, yet my treatment remains the same, none.
Medically, I had many other appointments throughout the year, but the above experiences are what stood out. It was a year filled with absolute frustration, fear, and learning how to navigate medical appointments with this illness as a soft-spoken female who didn’t look sick. It was also the year where I decided to start this blog (two years ago this month). To this day I have very mixed emotions about the blog. Some parts of it I love, other parts, like what I’m doing this month, I don’t love. It feels like I’m violating my own privacy. Is that even a thing?! It’s oversharing and then some, but if it helps one person it’s worth it, and hopefully when all is said and done it will have helped me too. I can’t say if it’s helped me, yet. I’ve met some really neat people from all over the world and that part I love. A few people have contacted me and told me they appreciated my candor and shared that it’s helped them know they aren’t alone, so I keep at it, partly in hopes of catching that one person on that worst day. Because sometimes just knowing someone understands your worst day is enough to keep you here. I don’t know if I’ve ever shared this here but when I first got sick one of my friends, who I had been emotionally supportive of, took her life. She had emailed me days prior and I did the best I could but I knew it wasn’t enough, and in reflection she said all the things that should have been red flags to me, but I just missed it, and I know I couldn’t have saved her anyway (she lived hundreds of miles away), but I still feel like if I just would have had a better response to her, that maybe, she’d be here. So, in part, this blog has been about letting people know they aren’t alone, that no matter how hard they are struggling, tomorrow is a new day, and feelings come and go, sometimes we just have to wade through them to get to the other side, but there’s always an ‘other side’.
And finally, the highlight of my year came in Autumn. We went to the movies for the first time since I got sick. I knew I’d pay but I wasn’t about to miss the release of Unrest, a movie about my illness in the theater. People kindly offered me suggestions online of how to best manage a theater with noise and vision sensitivity, and I begged my body to behave. We went to the earliest showing in the day so there would be less people and it was a great plan, there were maybe 15 people. I sat back, with my feet up in my seat, and watched Jen Brea’s life unfold before me eyes. It was life changing. It affirmed a lot of my experiences, not only for me, but for my boyfriend too. I cried, he did too. It was a big turning point. I realized that feeling of fighting for my health and my rights was valid, I wasn’t just feeling that way, I was actually living it. I wrote a post about it and ended it with this:
I’m not going to say it was easy physically or emotionally, it wasn’t and I’m still recovering five days later and probably have a while to go, but I am going to say it was worth it. It gave me hope; it refreshed my tired soul and more than anything made me feel validated. You don’t really realize how it makes you feel to be told by doctor after doctor that they can’t help you, you don’t really know what that does to you until you see and hear of so many others, millions, being told the same thing, and I cannot begin to articulate how healing the experience was, because I simply cannot put it into words. And when I say healing, I don’t mean of this illness, but healing for my aching heart, healing for my tired soul.
If you made it all the way through, thank you, honestly. I know these posts aren’t fun. My interactions are down, and that’s okay. It’s not meant to be about likes and comments, it’s meant to be about connecting with the person who needed to read this today and myself, connecting with myself, because this has been a harrowing experience, but I’m still here, and I intend on fighting onward. Next week will be the final wrap up, wherein I’ll share the rest of my diagnoses, and where I am emotionally today, as a person who has lived basically in the bedroom for five years. Hoping today has been kind to you, a few more of my little doodles below. 🌼