About me and my road to diagnosis

April 1, 2014 by lupusandthetwentysomethings 7 Comments

If you chose to ride along, here’s a little more about myself and my road to diagnosis…

Beware! It’s long and detailed… (I also recommend reading my first blog post first) and yes will probably be the only super long post I write.

Back in the day, I was a competitive gymnast. I trained 30 hours per week and managed to stay in the public school system and take AP courses. I would do my homework in the car on the hour drive to and from the gym and traveled all over the country on the weekends. I graduated with honors in June of 2010. I wanted to be a “regular college student” and opted out of the collegiate gymnastics route. Needless to say my parents weren’t all too happy about now having to pay for my higher education 😉

I went to college the following August. I had made the cheerleading team and was looking forward to a new start. I loved the school and the town from the beginning. It had everything I could imagine. Being an outdoorsy kinda person- the river flowing through campus was a selling point!  My first semester was incredible. From cheering at my first collegiate football game to the first frat party, I had such a good time.

Looking back now, I feel like this is where my battle with lupus began. Towards the end of the semester, it seemed I had lost my drive. I was coming up with excuses to get out of practice. Tumbling started to become more painful than ever before. I got so tired even during easy practices, which was so baffling to me. Don’t get me wrong, it was a lot. We practiced three times a week, had games once or twice a week, and I was taking 15 hours of classes. But it wasn’t school all day practice all night/weekends that used to be so doable. I just figured I was getting older and had put quite a few years of strain on those old joints. In the end, I decided my body couldn’t take it and I cut my cheerleading gig short. Nonetheless, go bobcats and the Texas State Spirit Program!

Ok so recap: me, the huge lazy quitter (aka ex cheerleader with no gymnastics scholarship), moved into an apartment and started my sophomore year of college.

Sophomore year, joined a sorority! Myself and my long-term long-distance boyfriend had called it quits, so new year, new place, and another new start, so go Greek! Right? Well I did that whole thing, which I guess was cool (you can see where this is going right? remember me the huge lazy quitter). I met some really nice people through the process and in the organization and had some really good times. We had weekly meetings, mixers and social affairs, community service projects, blah blah blah. Everything was mandatory, minus the socials (arguably most people’s favorite part). It forced me to be more active. Since I had gone from literally almost every hour of every day filled since I was a little kid to a couple classes a day, I had absolutely no idea what to do with any of all this free time. As the weeks went on, I noticed myself losing interest in the whole thing. I would have rather sat around in my apartment than go to a meeting or mandatory event, so I couldn’t go to the social events. It kind of became a waste of a lot of money and I, surprise, ended up quitting. I started to do less and less of anything non-school related.

Describing my junior year in five words – lord someone kill me, please. I was in a pretty down place. I gained weight over the past year or so as I went from overly active to more sedentary, I got my first B (which I thought was the end of the world), it seemed like I came up with any excuse not to go out on the weekends. I broke out in hives spanning almost over my entire body multiple times a week. My face would get swollen and puffy, as would the veins in my hands and feet. At times, my skin was tender to even the lightest touch. I was SO tired. Again, classes getting harder. Overall, it was a physically and emotionally draining year. Music definitely got me through it. My roommate and I would turn on some tunes and sit in the living room doing school work for hours. You can really get lost in music sometimes. I think it has helped me find myself again. It’s also a good distraction. I’m grateful lucky enough to live so close to Austin and be able to see some of the most talented musicians in the country.

Diagnosis: Summer after Junior Year (2013)

I knew I needed to get help, but I didn’t really know where to start. I took the lab work from my wellness exam to an endocrinologist. I was hoping just to get the hives to go away. They are unbearable. Cortisone or Histamine, maybe Addison’s, something has to be causing this right? Benadryl will make them go away but I’ve never been to pro taking a lot of medication (which is unfortunate now) so I try to take it when I really need it. Sometimes I’ll take Allegra during the day but it doesn’t work as quickly or as well. She’s been the only doctor that has really listened to me and my specific problems. She saw the positive ANA from my wellness exam and recommended seeing a rheumatologist. She also ordered some labs. Those results: couple of small thyroid cysts (function fine), high fasting insulin, and diagnosed me with PCOS. I started taking birth control (generic form of lowestrin24) and metformin.

I went to basically the only rheumatologist in San Marcos. He had good reviews online but primarily deals with arthritis (although has pts with various autoimmune disorders). I waited patiently by myself for an hour and a half past my appointment time before I was shown to a room and didn’t see the doctor until two hours after my scheduled visit. He was frazzled and in a rush. He hadn’t even looked at the labs from the endocrinologist or the wellness exam I had faxed to his office and didn’t have them during the consultation. He asked very few questions regarding symptoms. I read it was best to log symptoms and specific occurrences you feel worse than others, so in the time before my visit I did just that. He didn’t read it, or even look at it. He ordered some labs and x-rays and was out of there in 15 minutes. He also prescribed me Cymbalta.

He told me when I came back (a 45 minute wait in the lobby this time) that I had arthritis and gave me a pamphlet on it. I really didn’t like the idea of taking an antidepressant, which he didn’t understand, so I never started the Cymbalta. Just the mechanism of action makes me a little uncomfortable. I would rather leave my brain be. Plus joint pain wasn’t really one of the major things I need to attack with medication at the time. He prescribed me plaquenil.

I went on a road trip to a camping and music festival at the end of the month with a couple of friends for my 21st birthday. I got really sick on the way there. It hurt to breathe – stabbing pain in my chest on one side and upper back and kidney on the other. I couldn’t get my eyes to focus on the road. My cheeks were red and blotchy and I was covered in hives. I was bundled up in the backseat of the truck hundreds of miles from home on my way to camp and party for four days, terrified. After the drive, I felt much better, but the weekend was a battle. If I hadn’t been an environment of such love, it would have been much more miserable. I’m going to my second out of state festival this summer (except in the heat this year, wish me luck).

My mom had called my doctor while I was at the festival. He said it sounded like I was having a lupus flare and the nurse suggested hospitalization. It was the worst I’ve felt in my entire life.

My dad came with me to my next appointment to try and get some more answers. I’ll never forget when the doctor came in. He said with a smirk on his face, “I heard you had a little flare up while you were out of town.” I was furious. Mocking a serious medical event he gave me no warning of. He insisted to my father that he had discussed lupus with me my previous visit and a bunch of things that never happened, all while pushing me a new set of questionnaires for lupus patients instead of osteoarthritis one I filled out in previous visits. I’d never felt more disrespected by a healthcare professional.

He prescribed methotrexate and refilled the plaquenil. Methotrexate is a hard one to get used to, I’ll leave it at that for now. Plus it’s also really hard on the body, ok I’m done. I had my ups and downs, but overall was doing about the same. Over the next few weeks, I couldn’t get an appointment with my doctor. The office called more than once to cancel and would leave a voicemail rescheduling to a time I was in class. Eventually she told me she would put me on a “wait list” and would call me when I could be fit in. Still am waiting for that call.

I was angry. It cost me$55 out of pocket at each of the appointments. That’s fifty-five dollars for fifteen to twenty five minutes of a physician’s time (not to mention what the insurance company covers).  Now if you’re twenty-something and in college, you can appreciate how far you can stretch an extra fifty-five dollars a month. I was so angry that I quit for six months. Yep I just quit lupus for the past six months. Even though it was still there, I was still sick, and stressed, and anxious, and still a girl with lupus I refused to think or do anything about it. I had recognized the problem, tried to fix it, and that was all I was willing to do. Well lookie there, hey denial! (rewind to the stages of coping reference from my first post, thanks college)

I moved closer to campus at the end of the summer. It’s made it easier to get to class and come home in between if I needed a break. I’ve had a lot of ups and downs this year. I get stressed at the drop of a hat now and I’ve went from someone who handled it pretty well to someone who completely shuts down and is overcome with anxiety. I spend much more time in bed. My life requires proper planning, another thing I have yet to master. Being just 21, not being able to do it all is extremely frustrating. Being the awkward gal that I am, I haven’t exactly figured out how I want to go about telling my friends which makes living with lupus much harder, but I know I will get there.

Oh yeah, I must mention the reason I’m here in the first place, to get one of those degrees! School is going well. Classes progressively have gotten harder freshman to senior year, as expected. I just finished my hardest semester in December and graduate in may! I’ve always done fairly well in school and didn’t want college to be any different, plus as a pre-physical therapy student I know my grades matter quite a bit grad-school wise. Junior year I really noticed the dreaded “brain fog” which has probably been my biggest struggle this semester. I haven’t quite figured out how to tackle it when my head doesn’t feel like thinking (aka right now, aka the reason I’m writing this). I studied A LOT up until this semester. Lucky for me and my senioritis, this semester- my last semester- is a fairly easy one. I graduate Sigma Cum Laude at the beginning of May. I plan to apply to physical therapy school in September. My biggest fear is that my lupus will interfere with the completion of such a demanding graduate program.

I’m now ready to fight. I’ve decided that instead of hiding from the monster under my bed, I’m going to face it. Two weeks ago I went to a new rheumatologist in my home town recommended by my endocrinologist, have gone back on plaquenil, and am ready to take my health more seriously.

Lupus has taken me away from myself. I can no longer be the person I have been for the past 21 years; I must change to fit the needs of my disease. I’ve learned that the hard way, and although unfair and frightening, I now have the courage to evaluate who I was and choose who I want to be. I just need to figure out who that is. This is my journey.