Medical Journey
*cover photo by Spoonie Village
Anyone who knows me personally has probably heard me say the words, “I’ve been sick for 20 years.” That, in a way, is accurate, but there’s much more to it than that. For the last year I’ve been actively working with doctors and specialist to try and figure out what’s actually wrong - but how did i even get here? Let’s take a little journey back in time.
It’s not secret that I have very little memories from my childhood and those that exist are fairly disjointed. Into my teenage years there’s more memories, but because of trauma a lot of those are also blurry. When I think about my physical health, I know that I’ve always had hip and back pain as well as headaches. I think when I was a teen I just assumed the headaches were because of whatever medication my psych team was trying at the time. The back pain was always associated with my hips - and that was something I was simply born with. As far as other issues, GI problems were always fairly prevalent, but it’s not like I ate healthy so that had to be the reason… right?
It wasn’t until I got to college that things took a little bit of a turn. In October 2005, I started on Lamictal (for the bipolar diagnosis that I didn’t actually have) and for the next 2 years or so, I was always sick. By that I mean I would get a cold for about 2-3 weeks, have a week to a week and a half where I felt ok, and then immediately get sick again. I practically lived in the health center at my college and they had no idea what was going on. My body was showing no sign of anything. Strep? Negative. Mono? Negative. Every single test was negative but I just kept getting sick. Any time I had blood drawn, my white blood cells were perfectly normal. It wasn’t until I went for a physical one year and had a regular CBC done where I noticed that my white blood cells were low… lower than normal! So what was happening is every time I got sick and my WBC count went up, it only went up into “normal range.”
You can imagine this made people scratch their heads!
In 2008 when I needed to have my gallbladder out, the first surgeon I saw turned me away because my body was showing no sign of infection. The second surgeon, thankfully, decided to take it out since I kept having attacks… and it’s a good thing he did! According to him, it was the “most infected gallbladder” he’d seen in someone my age. And yet my body wasn’t showing the infection. How could that be?
I kept trying to consult with my PCP at the time to get her to run more tests, but she wouldn’t listen to me. When I got a positive ANA (Antinuclear Antibody), which is usually an indication of an autoimmune disease, she told me it was nothing. When I started getting really bad migraines in 2009 and got referred to a neurologist, he brushed everything off, gave me medication for the migraines, and sent me on my way. I was truly beginning to think that I was going to live the rest of my life sick and in pain without any kind of assistance.
At one point, following a routine CBC, I really took a look at my blood work results. If doctor’s weren’t going to help me then I was going to do the research on my own. I noticed that it was my Lymphocytes that were lower than everything else. It was almost as if the Lamictal was attacking them somehow and that was leaving me defenseless to viruses and infections. When I came off of Lamictal in 2018/19, it took about a year or so for my system to adjust but in that time I got hit with what felt like a rapid fire triple whammy:
September 2019: a month-long flu
December 2019: a hacky horrific cough that led to…
December 2019 - March 2020: Pityriasis Rosea - a viral rash that results from a viral infection as an immune response
Everything seemed relatively ok after that (despite the state of the world) and I think being isolated at home actually may have helped my immune system recover. However, when I got Covid for the first time in December 2021 everything changed. It was as if everything that was already wrong with me - that I’d been finding a way to deal with for so many years - got turned up to 11. My body felt weak, I could barely make it up the stairs to my apartment, I wanted to pass out all the time, I couldn’t eat without becoming drenched in sweat… everything was harder! I kept trying to find ways to deal with it hoping that eventually things would pass, but nothing ever did.
When I moved to Vermont I knew that I was going to start really taking strides in my physical health. I had to wait 6 months before I could get in with a PCP which gave me plenty of time to prepare. I told her my biggest concerns and for the first time in my life someone listened! I was so overwhelmed that I started bawling my eyes out in her office. Not only had I never felt heard or seen by a doctor before, but she never once blamed any of my problems on my weight or made me feel like I was just making everything up. She immediately ordered a bunch of bloodwork and, once that started to come back, she put in referrals for further testing and specialists.
Since last February, I have had the following:
48 hour holter monitor
echocardiogram
stress test
3 chest x-rays
pulmonary function test
allergy testing (environmental only)
PET scan
… plus countless tubes of blood. The PET scan was following some lab work that was run by Rheumatology - which was an appointment I waited 10 months for! The lab in question (IL2 Receptor) showed that my T-cells were extremely high. This can typically indicate an overactive immune system. When the PET scan came back, I “lit up like a Christmas tree” - or so I kept saying. I knew it was going to be one or the other: either it would show nothing or it would show everything. I had several points that lit up and showed a lot of lymphatic activity. That can only mean 1 thing…
A trip to oncology.
Oncology. That word alone is terrifying. Add in the word biopsy and you’re in a tailspin of emotions and worst case scenarios. When I got in to meet with him, I was basically convinced I had cancer. He ran an ultrasound on my neck, found the lymph node in question, and scheduled a biopsy for the following week. I kept using the word “cancer” in regular sentences when talking to people because, if it did end up being that, I wanted to be prepared. I was saying things like, “Yeah, let’s plan for that… assuming I don’t have cancer.” I could tell my attitude was weighing on people, but it was the only way I could think to copy with all the emotions I was feeling at the time.
On February 28, at 5:30am, I arrived at UVM to get the questionable lymph node excised from my neck. Everything went well - except for some issues when the intubation tube came out - and just a few days later the results came back.
BENIGN!
No cancer for this girl! Just an overactive lymph node. So what next? Why are my T-cells so high and why am I continuously sick?
I had an appointment with my PCP that Wednesday and let her know the good news while throwing out some theories. One of which I’d been sitting on for a while - MCAS.
MCAS: Mast Cell Activation Syndrome
By now you’re probably asking, “Danielle, what the hell is that?!” I will try to explain it as simply as I can. Every person has mast cells. They are part of your immune system. Those with some kind of mast cell issue, like MCAS, will have overactive mast cells that become activated from anything and everything. Could be a virus, could be an allergic reaction, could be a change in the weather. Most people with MCAS have a long list of foods that they cannot consume in order to avoid an allergic reaction. Based on my reactions to certain foods plus my T-cells and other systematic problems I’m having, my PCP went with my theory and ran the first test for MCAS: tryptase. A normal tryptase should be under 10. Mine was 18.5.
Ding ding! We have a winner!
Thankfully, I already had an appointment schedule with the allergist that same week and when I brought the results to him, he finally listened to me. I am now on a “cocktail” of medications to help keep flare-ups at bay, while also trying my best to stay away from the foods that I know trigger a reaction… which is not always easy! While this does not solve any problems, having some kind of answer to why I always feel sick at least makes me know that I’m not completely crazy.
Just in the last few months, I have been somewhat diagnosed with:
Fibromyalgia
Hypermobility
MCAS
I am still awaiting a referral from neurology as I’m not entirely sure the fibro/hypermobile diagnoses are correct and think it may be something else - based on my headaches - but that is many many months away. For now we treat the pain and MCAS and go from there.
That brings us to today.
When I started working with this PCP last year, I figured we’d find someone autoimmune and I’d get on a treatment plan of some kind and that would be that. Not that I thought it would be a simple process, but over the course of 1) waiting for rheumatology and 2) seeing the results of the PET scan, my research has now gone in a completely different direction. Why do so much research on my own? Because I’ve had to all of these years. I’ve learned that if I go into an appointment informed, it not only helps me to ask the right questions, but allows me to advocate for myself.
Which brings me to my next point…
Had I had someone to advocate for me all those years ago, I may have been able to get a diagnosis of some kind which maybe would have made the last 10, 15, 20 years a little bit easier on me… or maybe nothing would have changed. Who knows! I can’t play the what if game no matter how bad I want to. I also know that I always have to advocate for myself because chances are that no one else will. That’s not to say that I don’t have people to support me right now… I do! But at the end of the day I really only have myself. That may be a negative way of looking at it, but I actually think it’s more realistic. People have their own lives and their own concerns - maybe they’re even dealing with their own health issues as well. You never really know what’s going on in someone’s life so being able to have your own back is just as important as being there for others.
I have learned a lot over the last year and, if nothing else, I’ve proven that I’m even more resilient than I’d previously given myself credit for. The allergist wanted to praise my PCP for running the correct tests, but she just wanted to give me the props for advocating for myself. At the end of the day, I may be in this day to day battle solo, but I’ve got an army I can call upon when needed.
- Danielle
