I thought about writing this blog for several weeks. I decided that I didn’t really have any answers and decided not to write. I worried it was more “wah wah wah”. But lately I started thinking about how much it would have helped me to read something like this by someone else, so here goes. Bear with me as I step back and pull up all the weirdness I’ve experienced over the past two years.
Two years ago I was diagnosed with acute eosinophilic pneumonia. At the time I had absolutely no idea what this was and I assumed I was allergic to something or had done something to get this. Eosinophilic pneumonia was pneumonia but caused by a build up of disease fighting white blood cells in the lungs called eosinophils. If you look this up there can be causes of parasites, allergies, cancer, and unknown causes. When I saw the pulmonologist, I responded extremely well to corticosteroids. As my levels went down to the normal range and again after the second time, no biopsy was performed. They could find no reason for the buildup of the eosinophils in my lungs. After that diagnosis I carried a steroid inhaler and any time I started to feel the wheeziness come on I would use it and within a few days be back to normal. After a few months, the wheeziness went away completely.
Back to normal life. Sort of. Nothing of note except low grade fevers, night sweats every night and just not feeling that get up and go that pushed me through training for all kinds of endurance adventures over the past years. Just worn out every day. However, hasn’t everyone been feeling this way? We are just coming out of a pandemic that has had a profound effect on all of us. Between that, a new intense job and all kinds of normal family life….I thought I was right with everyone else. Just struggling to get my mojo back. I feared that I just ‘ lost IT’. Whatever that motivating factor was, I no longer had it. I was very much looking forward to racing Lake Placid last summer. I handled the training mostly okay. I recall writing a post to my Ironman Foundation teammates about struggling with the long bike rides and getting through them. But I did get through them- even though I moved them all inside on my smart trainer. The difference was that if I had a tough night or didn’t feel great I had the ability to switch my training to another day or later in the day or whatever I needed to do.
It was also last summer that I started to develop what I believed was restless leg syndrome. To those that deal with this, my heart goes out to you. What an awful disease that will make you absolutely bat shit crazy. Some nights I was up all night with tingly/numb/creepy crawly lower legs and feet and the only thing to help is physically kicking and moving them. I don’t have the words to explain how awful this is.
The day before Lake Placid I did something I rarely ever do: I rested. We dropped off our gear and I went back to the rented house and slept on the couch for hours. I never take naps. I never used to take naps. I never laid around all afternoon. But I did that day and all I could think was that I was SO ready for the race the next day- I even slept!! That night the restless legs kicked in and I was up all night. It sucked- I wanted to throw something at the walls I was so frustrated. After a long night of not resting we headed to the race. So, my issues at the race weren’t completely out of the blue but I still thought I could race. That is, until everything fell apart. I won’t go through that again as I’ve written the sob story before. After feeling awful starting around mile 40 of the bike and after many tears I called it a day around mile 70 on the bike.
Hindsight is a killer. I still rethink the race and wonder if I just quit and gave up. Even though I now know I had so much more going on, it’s just one of those days that will forever feel “wrong” and give me that pit in my stomach. I’m not a quitter. I went into the doctor after that race to try to figure out what was going on. My primary care, who I liked, had left the practice and I saw a PA who did not give me the time of day. I got some very basic blood tests, a back xray and she told me to take Hydroxyzine (Benadryl) for my anxiety.
I felt pretty badly about myself. I immediately signed up for IM Chatanooga for redemption but between Covid and just not feeling myself I deferred it. I was able to run a 52 mile 12 hour ultra in November. I still don’t know how other than it was a good training for me and it was a low key race that I absolutely adored. I’m proud of that race for so many reasons. Something in me desperately needed the redemption that day.
I was feeling okay over Christmas but still experiencing the fevers and night sweats. But I’m a 44 year old woman. Night sweats are just a common thing, right? So I complained but never thought much about them being more than perimenopause. I’m getting older and I just thought all my feelings were just what it was like to get older. In the Zwift (virtual cycling and running world where you connect with your treadmill or smart trainer)group I run with (ZLDR ) had a January Challenge. I killed my ultra week travelling more miles than ever had in a week. A lot of slow running. A lot of extra walking. Just a lot. I was motivated really for the first time in a long time and I had this fantastic team- I thought I finally found my mojo again. However, after that week I was wrecked. And by the end of February I started to get shin pain. Ugly shin pain. Shin pain that put me in the ER one Monday morning. I feared the “stress fracture” diagnosis very much but suspected that was what I had. X-ray was clean. I was put in a boot anyways until the MRI came back as xrays don’t usually show stress fractures. A few weeks later the MRI came back clean. The pain was as bad as ever. I was kept in a boot because the ortho still did not know what was wrong. The ultrasounds were clear. He even tried injecting lidocaine behind my tibia to see if it helped. Nothing. At this time my ortho suggested I find a new primary care physician. Geoffrey helped me find a reputable doctor and I waited quite a while to be able to see her. I stayed in the boot for probably 5-6 weeks but as it did no good we got rid of it and I started to run again.
The pain was the same but no worse and no better- I was just learning to live with it.
I saw my new doctor in mid May and she suggested I see a neurologist as she was concerned about something such as MS. So was I.
She put me on some new medicine to try to help with the nerve pain and the side effects SUCKED. I kept running but it was difficult- every run was that run you just barely get through counting the seconds. The following Saturday I planned to run the Wineglass 8K with Aria. I knew it wouldn’t go well but I promised and I was going to run it. It was a humid slog fest. I reminded myself of how lucky I was to be there. I smiled and I truly smiled when I ran around the track to the finish line. It was ugly but so many friends were there I hadn’t seen since before covid that I knew it wasn’t about the run. Later that day I broke out into a rash on my arms and legs- an ugly, weird looking rash. I immediately thought I was having a reaction to the nerve medicine I was taking but several people said it didn’t look like a medicine reaction rash. So I waiting for Monday morning and went back in to my doctor. She agreed that the rash I had did not look like an allergic reaction. She sent me for a large range of blood tests and put me on prednisone. The next day the blood tests started to come back in. Some of them off but one, in particular, shocked me. My eosinophils were through the roof. How can this be -my breathing was fine?!
In my head poured all the Eosinophilic diseases that I read about but quickly dismissed as they were scary and I didn’t have those symptoms. But shit. Do I? Acute Eosinophilic pneumonia or asthma starting in early 40’s with no history. Night sweats and Fevers. Eosinophils that move to other areas. Shit. Exhaustion and Rash. Shit. Numb/tingly legs and feet and Nerve pain. Shit. Shit. Shit.
My new primary care has been wonderful I can send her messages and questions and she answers them promptly. I have expressed what I thought and found and she agreed with me but is also very careful to draw a line at where her expertise ends. She has helped me find the people who can help me with those answers.
So I’m here. I see the neurologist tomorrow. I see hematology next week and Rheumatology after that. It’s been a long wait. And I have more questions than answers. And I AM scared. But I don’t have a choice. But I will handle it because I’ve got Geoffrey and the best family and support system one could ask for. And I’ve got a life I want to stay around for as long as I can- including my new absolutely adorable grandson! So I WILL get answers and I will go where I need to and do what I need to. I’m hoping I can also get back to my adventures. I’ve continued to run but I have some fun goals in the not distant future that I’m hoping to tackle. I want to live my best life, not just get fat and grumpy.
What I took a long blog to write is this:
FOLLOW YOUR GUT. For the past two years I felt like I lost my motivation and drive. I felt like I turned into a hypochondriac. I stopped mentioning things because I was sick of myself and my excuses. But I knew something wasn’t right. I didn’t listen to the person that knows me best: ME. I should have demanded help and not let anyone blow me off or make me feel bad. I never would have guessed this all is tied together but I knew I wasn’t myself. If you aren’t yourself…if your gut is saying something….listen to it. If you need a friend to back you up I can do it. Reach out to me and I will help. Just listen to yourself- you know yourself best. And don’t be afraid to advocate for yourself. I didn’t and it wasn’t until my shin that I knew something was really off. It was lonely. I don’t want you to go through this and I don’t want you to feel alone. Maybe we can help each other do better with it all. 😊
meghanruns.wordpress.com 