Ask Me Anything: Volume 2

Welcome back! If you missed my first post, here it is! These questions are based on a /r/AMA (Reddit's “Ask me Anything”) where I did one based on my experiences as a young woman with an autoimmune disease. I got loads of good questions, and I'm back to answer round #2 of three questions submitted by users. If you have questions of your own that I haven't answered, shoot me an email and I would be glad to add them to my next post! So, without further ado...

Mollym00n asks:

“What is your diet like?”

I don't abide by one specific diet, but I do tend to avoid certain foods and eat more of others.

A common side effect of Lupus is anemia, which can be a cause for chronic fatigue. I feel less fatigued when I am eating foods and taking vitamins that are helpful for anemics.

Vitamin B12 plays a large part in my life. Taking a supplement each day usually proves effective in dealing with the energy I would otherwise lack. It's a common treatment for anemia, and it certainly helps me! However, you can also get B12 from food, especially meat. This can be difficult for some people, like vegetarians or, people like me, who like meat but have trouble digesting it. So, supplements it is!

Eating healthy is important when you have an autoimmune disease because the better you treat your body, the easier it's going to be to maintain your appetite, sleep patterns, exercise and day to day activities. Finding a meal plan that works for you is a wise decision. (She says as she desperately tries to hide her bag of hot Cheetoes.)

http://patientadvocates.com/sites/default/files/vitamin-b12-benefits1.jpg

Stayonthecloud asks:

“[...Describe] your journey from first having symptoms bad enough to see a doctor to actually achieving a diagnosis to figuring out your current ways to cope with [Lupus.]”

I can trace my symptoms back to childhood, feeling overly fatigued and dizzy for no reason. As a teen, I was diagnosed with anemia, and saw a cardiologist about a tightness in my chest and shortness of breath that they couldn't explain (which I would later come to find was a common symptom of lupus.) My back pain started as a teen, but peaked when I was about 18. That's also when the chronic fatigue began, and I found out I had scoliosis.

I didn't understand the necessity of having a PCP (primary care physician) for...well, way too long. I'd go to walk-in clinics, believing that after a course of Norco and some bed rest, it'd let up. Well, it didn't. Eventually, it became infuriating, as the pain was so bad that I was failing in college. I saw an FNP at my school, and he was the one who ordered the Xrays and bloodwork that showed that I had scoliosis and a positive ANA (and autoimmune disease.) But since he wasn't an actual doctor, my Lupus wasn't properly put in writing.

My first PCP did one series of tests himself and (mis)diagnosed me with Fibromyalgia. It wasn't long before I left him for another PCP. I was with this one for a couple years. He helped me with pain management, but he never had enough time to sit and speak with me long enough to get a diagnosis. He was so booked that I couldn't see him for 3-6 months at a time, which is not ideal for someone needing monthly medical attention.

When my PCP was booked one day, I saw a different doctor who actually sat and talked to me. She said that if I were her patient, she'd order buttloads of tests and Xrays. She also agreed that my Fibro diagnosis was likely false, and also leaned more toward accepting that it was an autoimmune disease. She is helping to solidify my Lupus diagnosis right now, as my new PCP. She is wonderful.

This PCP is a Godsend. It took me up until I was 24 to get diagnosed. In total, my search for answers went on for 6 years, and took 4 primary care physicians, along with countless other medical staff.

Dereksmalls1985 asks:

“What is the most significant way in which this disease has effected your life?”

Mostly it's the pain. I wake up with it. I go to sleep with it. I run errands with it. As I continue to perform tasks that I love and indulge in my favorite hobbies, it's there, sometimes subtly and other times threatening to take me out of the game for the day.

It took me way too long to understand that the pain and fatigue wasn't normal. I've had it since I was a kid. And as an adult, I feel resentful because of the adults in my life being ignorant.

In 8^th grade, my scoliosis-check nurse couldn't tell if my spine was crooked or if my pants (which lacked a button) were the issue. My foster guardian yelled at me that night for having shitty pants (not that I got to choose my clothes in foster care.) Being angry with me was, evidently, more important than following up on a medical anomaly. While I was still growing, I could have had a back brace. But my scoliosis wasn't confirmed until I was an adult. I have much pain because of it.

Actual X-ray of my crooked-ass spine and uneven (but still luscious!) hips.

When I went back to live with my mother, I started getting sick. Here and there, at odd times. She blamed it on stress and didn't think anything of it, but I finally got her to take me to the doctors. I saw two pediatricians. I came up positive for anemia, but my doctors continued to refer me to counselors for stress. I was having tightness in my chest (common with Lupus) and was referred to a cardiologist. The EKG caught some irregularities, but the doctors wouldn't accept them, as they were printed too dark. Instead of getting new ones, the whole thing was dropped and once again I was referred to counselors...and even God. God...was my doctor's answer.

In short, I resent that all of this happened. Nobody took me seriously, and if any of these symptoms had been caught earlier, I could have had a much different outcome. I try my best not to dwell on it and I appreciate future goals more than I do hovering over past mistakes. But it still hurts, and it still effects me.

~

Thanks for reading! Sorry this one was so depressing there at the end. Sometimes, these aren't easy questions, but they're still totally relevant. I just hope that chronic illness awareness, especially in youths, spreads from doctors to parents to peers, because young kids do get sick and if it's caught early, it can really make a difference!

See you next time!

For questions, comments, concerns or kittens, shoot me an email. Also, if you have questions of your own about my health, I would be glad to further my AMA and post them!

Contact me at NikeNicholson@gmail.com and have an awesome day, my chronic cats!

BONUS XRAY!
An X-ray taken when I had a septum ring!