My senior year of college was awesome. I loved living with my coolest friend Katy, having impromptu dance parties with ice cream and watching copious amount of Law and Order on energy drinks while writing our capstones.
She’s seriously helped me so much in the last few years. Seriously, she’s the Bey to my Nicki (or vice versa?).
My SJIA started acting up more during our senior year, no doubt in part due to the stress we were under. The campus clinic gals told me that I knew my body better than they did and that they couldn’t help me, unless of course I knew exactly what I needed (eg, the times I needed crutches).
Fade in to me crying in our very pink bathtub.
After being told to lie to my college for the first little while about insurance, I finally had bought my own for my senior year. Due to cash issues, I couldn’t really do much until after I got my tax return so I dealt with a crappy body (and nasty ass bronchitis) on my own until I was able to set up an appointment to get a referral to a rheumatologist in Milwaukee.
The rheumatologist was great – so great that after I moved to Madison, I kept seeing her for a while until I really needed to find someone closer. She respected that I didn’t want to start meds right away. After I got back from my May trip back to Oregon with T, I realized I couldn’t live like this before.
She got the paperwork for a handicapped parking placard to me, which is really how I was able to go to grad school as long as I did.
A month later, I contacted her to start Plaquenil.
Then a month after that, I had a horrible flare combined with an allergic reaction. I couldn’t sleep on my broken futon anyway – trying to do so like this was torture. I was so itchy that I couldn’t see straight.
I headed to the UW campus docs, and they made it clear that this was really serious.
I mean, I knew it, but a doc saying that? It was really scary.
Once I started seeing a local rheumatologist, I thought things would get better.
I was on prednisone for the first time ever and wanting to eat everything. He started me on other meds. I complained of nerve pains and he suspected I had fibromyalgia but never said a thing to me.
That’s right – I went even longer than I should have had to in order to get treatment for one of the most painful illnesses out there. He also wouldn’t help me with my pain levels at all.
Way to go doc.
Did I mention that he’s written a book on integrative rheumatology? It’s kind of frightening.
I saw him because he was close to my grad school. It made it easy to duck out of class or sneak in late after an appointment. I quickly realized that convenience wasn’t worth the lack of care when he canceled an appointment two days before due to a last minute conference. The office didn’t care that as a graduate student working several jobs I had to take that day off. They didn’t care that I was losing money.
For the first time, I really had to fight to get my own care.
You know, if by party I mean move.
I researched rheumys in the area and found the highest rated, called their offices, and got an appointment four months out with them… which is about how long I would’ve had to wait for another appointment with my doc anyway.
In the meantime, I was seeing the on-campus docs for my primary care. The doc I had listed was very nice, but didn’t know what she was doing in regards to me and made that clear. She even told me to find a different provider outside of the campus clinic so that I could get the best care.
No one talked to me about insurance. So that was a fun giant ass bill to get in the mail.
Growing up the way that I did meant that I had to do this all on my own. No one in my family regularly saw a doctor or knew how to navigate the system well themselves. That made it really hard. Here I am trying to study, trying to make something of myself, and I ended up working more to pay for those bills (or trying to anyway) than I was studying.
As I got sicker and sicker, it became apparent that working and going to school at the same time wasn’t going to happen… and I couldn’t quit my job…. so school had to go. It was just as well, because my mobility went crazy downhill on top of the ridiculous snow we got.
My mother, who hardly talked to me and was never around me, accused me of being an alcoholic for having one drink in the evening after a rough day while I was on the phone with her. It didn’t matter that I had bought a case of 30 Mike’s hard lemonades on sale two months prior and had had maybe three up until that point. It didn’t matter that I was depressed and in pain and upset about the grad school issue. She just kept ragging on me until I said I needed to go.
Months went on and the only thing that got better was the weather. One night I thought about crashing the car into a pole at an intersection near work. I thought that it would finally get someone to look at how much pain I was in and treat it – or the impact would kill me and the pain wouldn’t be an issue.
I wound up with C. diff after getting a tooth pulled. My primary care didn’t want to help with the pain.
I had started therapy, talking to some random dude without really getting any help at all aside from the validation that my mother was indeed the problem and not myself. I thought it couldn’t get any worse.
Laura passed away while I was in therapy.
The pain I had mentally and physically just increased in ways I couldn’t imagine.
I felt like I couldn’t do it anymore. I cried more often than not. I often couldn’t work because the fibro pain was so bad I couldn’t stand the sensation of clothing. I had lost everything I was working towards with school and was now in debt both from school and from medical bills. My mother didn’t give two shits about my mental state, other than the alcoholic bit and telling me to apply for disability and just give up.
I was horribly depressing and couldn’t take it anymore.
But I was planning my wedding and driving down whenever I could to spend time with my sister and her baby girl. I decided that I had to be proactive, if not for me then for T, Kels, and Missy Moo.
I realized that the big difference between pediatric and adult care is that the doctors don’t really care. I mean, they do to the extent that they want you to be well, but most of them don’t ask about things outside of your treatment or diagnosis or how certain ideas on treatment will fit into your life, etc. Many of them don’t put two and two together, and you’re always expected to hold up the rear.
I had finally asked my rheumy’s nurse practitioner to look at the symptoms I’d been reporting while seeing them. I told her I was afraid that it was MS and that I didn’t want to go out like my great grandma. I broke down.
She looked at everything I had said, ordered labs and a sleep test, and told me I likely had fibromyalgia. As she went over more of the symptoms, it became readily apparent that I had at least parts of this for much of my life.
This happened before Laura’s death. It took so long to find the right medication and dosage that it carried on for a while after that.
Since all of this, I’ve had to fight for changes in medication and care multiple times.
When it came time to deal with my issues with my mother, that fighting spirit really really helped.
For me to fight for myself took some drastic measures. Dealing with these illnesses and the abuse I did growing up, I had shitty ass self-esteem. I had to start learning that I was worth fighting for, that I matter.
That’s still a journey I’m on, especially in starting to finally face the abuse I’ve been through.
It’s really hard, especially when it’s people who are supposed to love you unconditionally and protect you.
But facing my mother, dealing with the abuse… It’s all led me to something that I’ve faked in the past but never had – self-worth and confidence. I’m beginning to love myself, to catch myself in the mirror and realize how beautiful I am inside and out. I realize the things I do to help others, at work and on my own time. Some of those people are strangers, friends I haven’t met face to face, or close friends from long ago.
Watching The Simpsons is generally involved too. Gus has learned that it’s pretty funny.
One of the things I’ve had to learn is when to fight, and that isn’t always easy when you don’t have super great social skills. I have to really start working through my abuse and all these things before I can really have what I want – full peace.
It doesn’t always look the same to everyone, but for me it looks like having a relationship with my dad & his family – one that includes Kelsey, helping my sister and those niblings to live an amazing life, spending time with my little family of piggies and T, getting a house eventually, finding a job where my hobbies like blogging and health activism take center stage, being able to travel and visit my amazing spoonie friends, and maybe having a kiddo or two.
I wouldn’t mind living in California either.
Y’all need to get some more rain though. Eep.
Whatever you’ve been through, just remember that you are worth the effort it takes to really love and care for yourself. You wouldn’t keep driving your car with the engine light on for years without getting it checked out and fixed would you?