Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
undifferentiated connective tissue disease
When were you diagnosed?
How long have you had symptoms?
since February 2012
Have you been limited in any way from your illness? If so, how?
Yes – My day-to-day function is always up in the air. Like many people dealing with chronic illness, I’ll have days where my energy is great and others where I need to lay down again by 10AM. It’s definitely a challenge to feel like I can’t plan ahead too much. Additionally, sun exposure triggers symptoms and, living in Arizona, it’s a bit hard to stay away from that.
What’s your story?
In February 2012, I came down with a sore throat that wouldn’t quit…for about three months. I was in my third year of college, and the Health Services department told me I had a cold, or seasonal allergies. I took what they said as truth, but not without some worry.
Fast-forward to the end of those three months when I welcomed in fatigue. I would sleep 9-11 hours a night and wake feeling absolutely exhausted. I went back to Health Services and they claimed it was depression, anxiety. After that, I found myself on Zoloft and Lorazepam and still very, very tired. I’d had issues with depression in the past, and had been diagnosed with a panic disorder, but the fatigue I was experiencing felt very outside of those two things.
To keep a long story short, a year or so later, some chronically inflamed lymph nodes lead to me a blood test that confirmed those three months of a sore throat was, in fact, mono. I explain all of this because I feel like it really was the starting point for all of my autoimmune issues. Recently, a visit to my rheumatologist began with her asking if I’d ever had mono. When I responded, “yes,” she stated that mono is often a trigger for these issues, especially if one doesn’t take care of themselves while they’ve got it. Mind you, because I never knew I had mono when I did, I was busy biking 20ish miles a day and carrying on with my life like there was nothing wrong.
I graduated from college in 2013, hung around working an admin job for a year, and in 2014 moved to Atlanta. I only stuck around Georgia for three months because I began having health problems. Then, at 23, I found myself back in Arizona, living with my family because my body was on the mend after a severe episode of hypokalemia (low potassium). Once I seemed to “get over” that hump, things leveled out for about six months.
I broke up with someone, fell in love with someone new, jumped out of a second story window after my neighbor caught our apartments on fire, got laid off from a tanking company, moved into a house that I lost 2K on, moved out of said house, and then (this is where things get interesting) moved into a hell hole of an apartment infested with bed bugs.
Ironically, those bugs would be the factor that actually lead me to a diagnosis. You see, as all of this was going on, I was experiencing chronic fatigue, weight loss, drying of my mucus membranes, nausea, dizziness, and headaches. Doctors, again, attributed everything to stress and anxiety.
Once I moved into the hell hole apartment with my boyfriend, I began breaking out in severe hives. They started on my thighs and eventually spread to cover a significant portion of both legs, one arm in its entirety, and the other partially. I went to a dermatologist who, after a skin biopsy, deemed it an allergic reaction to an unknown source. A round of steroids cleared things up, but I still broke out in similar hives when I was in the sun. Ultimately, I found myself seeing an allergist, determined to get to the bottom of all the strange things my body had been doing. A panel of tests showed I was allergic to nothing but beef (which gave my vegan diet a high-five!), but that I had tested positive for the ANA antibody. Finally, during my last visit with her, as she examined the hives on my arm, she reported that some of them looked like bed bug bites and that I could be reacting to them. She didn’t recommend that I go through with any further testing due to the ANA antibody, but I felt like it could be related to all the other symptoms I’d been experiencing.
Well, we did end up with bed bugs. It was terrible because the bites exacerbated all of my symptoms, also terrible because WE HAD BED BUGS. I ended up going to my PCP who did more blood work and reported back that I’d tested positive for the Sjogren’s antibody and needed to see a rheumatologist. At that point, I was worn down, exhausted, and just wanted to know what was wrong with me. I ate half a cake and cried the night I got the Sjogren’s diagnosis. After years of feeling like there was something wrong with me, there actually was.
After my initial appointment with a rheumatologist, I needed to wait 2 months for the results to get back. When I went in for the results she told me my blood work had lit up for a bunch of antibodies (lupus, hashimotos, and sjogren’s being a few of them), but that there weren’t enough clinical findings to actually diagnose me with an autoimmune condition because the rest of my blood looked great. Additionally, I no longer tested positive for the ANA antibody. She diagnosed me with undifferentiated connective tissues disease (UCTD)…basically, all the symptoms with none of the basis.
My emotional response was strange: it was both a relief, and devastating. With my current diagnosis the only thing I’ve been offered to relieve any of the symptoms has been ibuprofen. I have to continue living with these symptoms that impact my functioning and quality of life, but at the same time, I’m grateful there weren’t more serious findings. That being said, a high percentage of people with UCTD go on to develop the full-blown diseases they carry antibodies for within 6 years (at least that’s what my research has told me…correct me if I’m wrong!).
At this point, I’m trying to stay positive, but it’s hard not to think about what the future could bring. This whole thing feels like an unknown beast to me, and I feel like I need to give in to that because overthinking it is only going to cause me more harm than good.
I feel like that may not have been brief…
How has your illness changed your life?
In every way. The way that I think about my capabilities, my future, my daily life.
What are your goals for the future? (Not related to your health)
I’d like to get my Masters in Social Work (MSW) soon. Right now I’m working in the social work field in a vocational rehab role as a job coach, but I’d really like to work with survivors of sexual assault/rape or domestic violence in an advocacy role.
I’d like to feel like I have energy for creative endeavors again, and to be able to build up the confidence to feel like I can be spontaneous again. One day I’d like to have a family, too.
What are your goals for the future? (Health related)
Right now, I’m working on trying to get myself into more of a set routine, or daily pattern, that prioritizes incorporating things that will better my physical state. Gaining more energy and muscle strength are key goals of mine.
Do you consider yourself handicapped or disabled? Why or why not?
Because I only received my diagnosis a few weeks ago, it’s hard to say. I’m honestly still taking all of this in. Yes, there are chronic symptoms I deal with that impact me daily, but I also feel so grateful to have the level of functioning and mobility that I do.
What would you like readers to take from your experience?
I guess I’d like readers to feel more “okay” about not being “okay” when it comes to accepting their symptoms and/or diagnosis. I have days where I feel like I’m on top of this stuff and that it doesn’t need to emotionally impact me. Then, I have days that make me blow up because my hands are feeling weak, or I’m throwing up for the fourth time in a week. It’s a tricky balancing act, one that I have yet to figure out, and that’s not a bad thing. You’re allowed to react how you’re going to react. There’s no streamline timetable of acceptance and, if there is, it should be thrown out.
People can feel free to contact Britni by email, or get in touch on Facebook, if they’re looking for support or community.