Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Nicole's Story.'


Countryside bike

My name is Nicole Rios. I actually went straight from in a relationship to married in one night! My (now) husband surprised me knowing how stress exacerbates my symptoms with a surprise Proposal and engagement party. He then took me inside privately and said if I wanted, we could get married that night...so we did! I wrote about it on my blog http://nicolecarfagna.com/surprise-engagement-surprise-wedding/. I’m still in shock haha but I couldn’t have imagined a more perfect way to marry the man of my dreams.

I was diagnosed with lupus in September 2011. It wasn’t too bad at first, and then spiraled out of control in 2015. I haven’t been able to work, I was on a ton of medications and now am finally on one that is working... I lost a ton of weight and muscle so I’m in physical therapy and seeing a nutritionist. I was diagnosed with fibromyalgia in January 2016. Honestly, I don’t do much for that. I can tell when I’m flaring or it’s acting up, and it’s frustrating, but unfortunately I just deal with the pain. I’m working on some other things first and then hopefully can get this under control. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) last year (March 2017). That was a tough one. It got to the point where whenever I stood up I’d have to go down to the ground to prevent passing out. I tried to treat it as naturally as possible at first by drinking a lot of electrolytes and salting my food, plus wearing compression socks. The salt added to my lack of appetite so my doctors finally said recently that I needed to try medication so I did and it seems to be working!

Nicole and her Husband

It’s weird that you take things for granted when you’re able to do them. I miss flexibility...being able to do whatever I want! That’s something that upsets me a lot. My health varies from day to day so it’s made me unreliable. More specifically though, I miss golfing, hiking and skiing.

I’m on disability now. I have my masters in special education and in addition to that I was doing behavior intervention and parent training (which I LOVE). I had to stop in 2016. Last fall I started working part time with a real estate company nearby. It became too much so they are amazing and flexible and let me work from home as much as I can. It usually amounts to only a couple of hours a week, but I feel so lucky to be able to do that.

Fearless Fest

I feel like I was always sick growing up. I have a lot of memories being in the nurse at school. In high school some of the aches and pains started, plus daily headaches. Over the next few years, there were unanswered ailments, hospital visits, and countless tests.

The diagnosis was so hard, physically and mentally. Physically I was suffering and in pain! Mentally, it took a toll. Feeling sick and knowing something is wrong, but being told that everything is fine is incredibly confusing. I never wanted a diagnosis, but I didn’t want to feel like I was crazy, which I started to. It took about six years of symptoms to finally get a diagnosis of lupus.

Nicole

I didn't really search the internet. I trusted my doctors and knew they were really trying to figure out what was wrong, especially my primary care doctor. Also, my family made a pact not to google things. I feel like there’s much more negative reviews out there and we always seemed to find horrible answers to our symptoms, so we decided we’d go straight to the source (our doctors) unless they give us a specific website to check out!

Honestly it depends on the flare and also depends on what’s flaring (Lupus, fibro or POTS). A basic flare for lupus would consist of a low grade fever, bad joint pain, intense fatigue, a migraine, and pleurisy. I usually take steroids when I’m flaring bad to get a little relief.

Injection

Pleurisy pain is like having a knife stuck in your back and it twists deeper every time you breathe. Joint pain (especially in my hips) can feel like they are being hit with a hammer over and over again. Fatigue isn’t just being tired...it’s being so tired that I’d lay down wherever I am to sleep and I feel like if I don’t sleep I’ll collapse.

When my health got really bad back in 2015, I was in a flare for months to years. It was bad. The doctors tried a number of different medications but I never had a “good” day. Now, I think I’m finally having an equal amount of good and bad days which is progress. A flare may last for a day or two...but could also last longer. I had one for about two months a few months ago.

Injection

I manage my flares by resting! I let myself sleep when my body needs to, but I also try to move because it makes me feel better. I also usually am put on steroids to reduce inflammation. I’ll contact my rheumatologist to fill her in and keep her posted and I’ll get blood work done to make sure nothing is out of control, but mostly I just have to wait it out.

STRESS is a number one trigger. Other than that, food (gluten and dairy), the sun, traveling (but I’m getting better learning tricks and tips), and overdoing it. Last week I felt good so I did something every day for five days straight! Then I collapsed and was in bed for 2-3 days.

Quote

Right now the main meds I’m on are Benlysta (the self injection...I just switched from the infusion), and plaquenil for lupus. Florinef for POTS. Zoloft for anxiety. Robaxin to sleep (it’s a muscle relaxer that helps prevent migraines). Botox for migraines. Cortisone injections occasionally in my hips for bursitis. A baby aspirin once a day. Prednisone for flares as needed. My supplements are a probiotic, fish oil, zinc, migrelief, vitamin D, vitamin b12 shots once a month. I think that’s it! It’s a lot and hard to keep track of (but I have an awesome pill case that I can keep everything together or take each day out which is much easier).Medications that haven’t worked? That would take forever to list. Some of the big ones that had a negative affect on me though are gabapentin, cymbalta, and Vicodin.

My biggest tip would be don’t give up. Stay away from negativity. You’ll have flares, but they will pass! You’re allowed to be sad, but try not to let yourself spiral out of control and if you feel that happening, talk to someone. For me, helping others helps me. I’ve become an ambassador for the Lupus Foundation, I fundraise for them and run an annual golf outing, and I try to write about or talk to as many people as possible to try to help them. It’s become a passion.

Quote

It’s negatively impacted my life because I no longer have the freedom to do anything I want to do. I also can’t work in the field I fell in love with. It positively impacted me though in a ton of ways. I realized what’s important in life and not to sweat the small stuff, which is amazing I think. I realized who really cares about me and who is there for me and I have an amazing support system. I’ve met some AMAZING people through the Lupus Foundation of America. I found a passion in writing or speaking to others! A goal of mine is to write a book, and I don’t think that would’ve been an idea if I didn’t get sick.

It has all stopped me from being active. I grew up with three brothers and love sports. I miss that. I’m in physical therapy now and every single time I am there I think about what I want to do and that gives me strength.

Be the one

Like I mentioned before, I realized who my true friends really are. I’ve read a lot that it’s tough for people to see friends/family sick. I can’t understand that because I’m on the other side and by being sick, I feel like I’ve become even more empathetic. But the people who support me have been amazing. They have picked me up when I’m down, brought me to doctors appointments, sat with me in the hospital, sat with me while I slept during infusions...and just sat with me at my house to keep me company. It’s amazing how compassionate some people can be and I’m so lucky to have the family and friends I do in my life!

I became very passionate about spreading awareness. I feel like I work a lot at home for free...but that’s fine! I focus on writing, speaking to others, doing interviews, and speaking in public. I also think I’m very empathetic. I can relate to people and also understand that even if I don’t know exactly what they’re going through, I can be there for them in whatever way they need. People need support differently and I like being able to be that person to help others.

Be the one

My hope for the future would be:

Number 1...a world without lupus.

Other than that, I hope to help as many people as I can. I hope I can help by example. I fight every day for my life and to be the best I can be. I have plenty of bad days, but I still try to make the best of every single day. If I help one person, I’ll be happy...but ideally it’ll be much more than that :-)

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

29 views0 comments

Recent Posts

See All