Ladies and Gents, Boys and Girls – Come & Ride the Death-Defying Roller Coaster LUPUS!

Roller Coaster Lupus

It always seems I’m on this roller coaster ride called Lupus. Which by the way would be a totally legit amusement park ride. In fact, it would be the scariest ride in the park. It would have super highs and steep lows, twists and sharp turns. The kind of roller coaster that have your legs dangling down and only your body cavity is strapped into. I can hear the ride master shouting now “Come ride the amazing, death-defying roller coaster ride that will leave you breathless – Lupus!!” Do you think I should pitch the idea to Disney?? LOL!

Roller Coaster Lupus

Comparing Lupus to a roller coaster ride is probably the best analogy on earth. You never know what the next twist or turn is going to bring. And one minute you can feel this great rush of life where everything is going fine. Then next thing you know you are screaming at the top of your lungs for fear of being plunged straight into the ground.

This Spring in Texas has been a very stormy season. This means my Lupus is completely out of control. Weather is a big trigger for my Lupus activity along with stress. Everyone’s triggers are different.

Keeping up with my work, daily household chores, the blog, and my social life has been extremely hard. This is the ugly side of Lupus I truly want you guys to be aware of. It’s a side of Lupus that often goes unspoken.

I’ve already given you the 4-1-1 on what Lupus is (see my previous blog post here). But what I haven’t really talked about is how much it affects my daily life. I didn’t want to have this blog be all about my lupus. But let’s be honest, I’m not going to be able to hide it all the time. Especially right now when it is taking over my life. It’s preventing me from focusing on pretty much every aspect of my life.

I started off fine in life. Everything was hunky-dory as one might say. Though I don’t know who uses this phrase often anymore, besides myself clearly. I was a happy go-lucky girl who just graduated high school, was working two full time jobs, going to the local community college to get those lovely but drab liberal arts classes out of the way.

And then my life was turned upside down…

I transferred to a four-year school to finish off my degree. Soon after I began working full time in Manhattan. To the rest of the world, my life was right on track as it should be. Little did most people know though, that I was suffering inside. I was in constant pain and just feeling sickly. Often going to doctor’s appointments whenever possible. The doctors were treating me like a lab rat, poking and prodding me to no end!

Then life got back to normal for a bit. I was put on some new medications that were working well and keeping my lupus stable. My four-hour commute was cut down as I moved closer into the city! I was working out at the gym weekly, losing weight and feeling good!

But then Lupus reared her ugly head again and I was back on the roller coaster. I was just riding up and up to the top of the ride waiting for that big drop that takes the air out of you.

Well I experienced that big drop alright. In fact, I experienced a few twists and turns as well. We had two back to back blizzards in NY in the winter of 2011. I was bedridden for over a month. Thank god for grocery delivery and take-out is all I can say! I was grateful the company I was with was completely fine with me working from home. This is something I have come to determine is a critical dynamic with the company I work for.

This is also when my love for Food Network and Friends kicked into high gear. I became a true TV junkie!

Watching TV

The city I loved so much was being enjoyed by everyone except me. I had started to forget what it looked like. It was truly depressing. No one really truly understands the meaning of “cabin fever” like a person with a chronic illness does.

But then I was back on the incline tracks of the roller coaster ride when I moved to Texas. Warmer climate agrees with me! It’s the yin to my yang, the Sonny to my Cher, the milk to my cookies…okay I’ll stop, LOL. Bottom line though, I was doing much better. I once again started some new meds, was working from home full time, and enjoying my new life. Don’t get too excited though as this happiness would not last long.

By the time 2014 rolled around, I was once again miserable. I was having flare ups weekly that would last for days at a time. My flare ups would consist of fevers, pain like you wouldn’t believe, loss of appetite, hair falling out, my rash fully present, and more. I was going to the ER on and off as if it had a special revolving door made especially for me.

I had broken up with my first rheumatologist that I found when I moved to Texas. He had in his mind I was suffering from depression rather than having lupus. But my new doctor was amazing and was trying to do everything in her power to help me. She finally came to the conclusion that I need to be on a treatment that was specifically for Lupus. It’s the first drug ever specifically for Lupus. Though it does not cure the illness (wouldn’t that be nice!) it does offer improved treatment.

While this new and improved treatment has been successful overall, I am once again starting to approach the very top of that next drop on the ride.

What Does This All Mean…

 

The moral of all this is, Lupus is extremely unpredictable. I go through many ups and downs over the years with my illness as I get older. It seems the illness gets worse as I age but I am not willing to lose all hope. I am not willing to give up my livelihood for the sake of this illness. I will NOT let it win! I’ve learned to listen to my body and rest when I need to. I go to the doctor when I should. And the biggest one, I take advantage of enjoying life when I can.

I encourage everyone who struggles with a difficult situation in their life to always pause, take a moment, and realize you need to enjoy life to its fullest whenever you can.

Seize the day

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