“Normal People Sick”

“Normal People” sick is my way of saying I have a regular virus. It refers to a sickness that has nothing to do with lupus. It’s something like the common cold, cough, or sore throat that people get all the time.

Lupus can really compromise a person’s immune system. But in spite of this, I have a pretty strong one, and I am pretty lucky I don’t get sick more often!

Let me tell you, having lupus and being sick is NOT fun! (Which, I’m sure plenty of you know already.) I haven’t been “normal people” sick in years – I can’t even remember what it was like to have the sniffles!

All that changed for me at the end of January. I guess I was due! It started simply with a scratchy throat and a runny nose. My nephrologist quickly prescribed me a Z Pack.

*Quick note about the Z Pack. I don’t know if anyone else has this problem. If I take both doses (as prescribed) the same day, I have a really bad reaction. My immune system does not appreciate both doses being digested. Anyone else?

Anyway, the illness didn’t seem to be anything major. I’ve had similar experiences before so I let it slide a few days. Then, it progressed to a cough and caused me to sleep ten hours a day. And on top of all that, I couldn’t swallow!

A quick trip to the doctor (forced by my mom and boyfriend) informed me that I had strep. UGH! So, I was prescribed another Z Pack!! I experienced two consecutive weeks of continuous coughing and inability to swallow.

I started to get better slowly. My improvement was 1) because of the antibiotics and 2) because I made certain to get plenty of sleep. Then, I got worse. Thrush. Ick! Talk about nasty! Because of all the antibiotics, I grew a fungal infection in my mouth! Swish and swallow medicine I was provided helped cure it in a week, but oh my goodness! The whole month was just awful! I was sick for Valentine’s Day and I even missed class and work.

So, I’m curious… who gets SUPER sick when they get “normal people” sick? Who gets lucky and skims by without experiencing something much worse?

Happy Valentine’s Day!

Love is in the air! It’s all over Facebook, Instagram and Twitter; pictures of hearts and what our significant others gave to us. Flowers mostly, maybe some chocolate and jewelry.
Is this really what this day is about? Saying “I love you” to the person you love and showering them with gifts shouldn’t be saved for one day. We should be telling the people we love how special they are to us every singe day!! Life is precious, why hold back?
In lieu of love and giving, today and the rest of the week I challenge you to do a random act of kindness for a stranger. Whatever you can to let them know they aren’t alone in this world. Think of how much this would mean to them. They will never forget it! You won’t either!
And don’t forget to tell the people you love how much they mean to you every single day!
Happy Valentine’s Day!
So much love,
Allie

Achy Joints Syndrome

Ever wake up and feel as if your joints are stuck together? Like you’re the Tin Man from the Wizard of Oz and you need oil to get the joints to cooperate? Do your hands ever swell? Do they get hot and sticky and really itchy? 

My knees and ankles are the big problems. In the morning, especially, I sometimes have to be extra careful in stepping on the floor after being in bed for eight hours. There have been times where my knees would give out, or my ankle would roll walking to the bathroom.  Eventually, the pain subsides, but sometimes even then it could take hours, if at all. 

My hands are a different story. In my opinion, it’s one of the most annoying feelings. 1) Because they don’t swell all the time and 2) when they do swell, it’s at the most inconvenient time! My rings won’t slide off my fingers, I look like I’m permanently carrying a baseball glove (exaggeration but puffy!) and I get worried of what people think. I’ve been known to not leave the house when I think I look too sick, or in too much joint pain to venture out. It’s embarrassing! 

Based on the votes on S.L.E.’s Facebook page, it seems like I’m not the only one who struggles with my hands. It always gives me such a sense of relief to know I’m not the only one struggling with these pesky problems. After reading every single comment, it seems like we are all in this together. We all either: take pain meds, take baths, use heating pads, keep a stricter diet, exercise through the pain, go back to sleep, etc…  

The one thing I’ve been doing that helps the most is stretching. I am not flexible by any means, but little by little I am starting to see improvements. Before I go to sleep I’ll twist my wrist- rotating it back and forth and move it in a circular motion. I tend to sleep on my hands so having extra blood pump through helps the circulation before I fall asleep. 

My ankles are a little harder to deal with but I still try and circle them around until I feel my muscles loosen. I also shower before bed which always seems to help relax me. I can’t take Advil or Motrin because of my kidney problems with Lupus, so I’m stuck with Tylenol. I guess it just numbs the pain instead of ridding it all together. 

I feel a connection to all those with Lupus. ESPECIALLY after reading the recent post on pain. I love that I can read comments and get tips on how to better treat myself. So, thank you! 

Stay healthy! XO

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The Stress Factor

Stress. Everyone experiences it at some point. Dozens of articles circling the internet, research done at colleges and pages of magazines all dote on the triggers of stress and of course, “the solutions.”

 

Yes, of course each day brings on a different type of stress, from high to low. I’ve read about these in articles too. I have a hard time balancing what constitutes something I need to be stressed about or if I should just let it be. If you’re like me, I can find a different stress with every day. Exams, papers, work, friends, a relationship, family, health, doctors, pretty routine stuff here… but then you can add in little tidbits: arriving some place on time, what a blood test will result in, where to spend Christmas and for how long, the heat in the apartment won’t work in the bedroom, driving in the snow (I can go on and on.) The question remains, which do I worry about? Which of these situations should I focus on stressing on? Of course, the ultimate answer would be NOTHING! But, this is reality and unfortunately, life doesn’t work like that. (Unless you are like that, and then I would LOVE for you to share your secret!!!)

 

Stress isn’t good for anyone. Stress isn’t good for your body. Stress isn’t good for someone with Lupus! How many of you have heard this? For me, it’s all the time, and I try really hard to listen. I’ve gotten better (I think).

 

Stress is a trigger in so many various ways for us people with Lupus. I’m talking mind, body and soul. The symptom list with feeling stressed can sometimes be comparable to a flare, if you were to put the two side by side.

 

Personally, I can feel my body shut down. Sometimes, my blood work is unstable too, but then everything comes back to normal when the stress disappears. I get feverish, exhaustion, achy body and mood swings. Ok, the last one probably isn’t Lupus related. A feeling of hopelessness is overwhelming and I get emotional. This especially happens in terms of my health and seeing the doctors. I’m always afraid something is wrong. I then start to spin, and overanalyze every awful scenario instead of anything positive.

 

What I’ve been doing lately is putting my different stresses into separate boxes, instead of just one big box. My health in one, school in one, work in another, my relationship has one, my family and so on. Each time something relates to a specific box, I open it, deal with it and close it back up. My dad taught me this trick. It helps A LOT, but the boxes do leak into each other occasionally. That’s when I become overwhelmed. I still find the energy to pick up the fallen pieces and put everything back together again.

 

It is very important to distress after each day. Leave everything that happened behind. There’s nothing we can do but to move on to the next day. To the future. I’m not very good at the distressing part, but I’m learning that it is an absolute must to do so!

 

When I am stressed, I like to have dinner with my boyfriend in our apartment with no outside distractions. We’ll put on a movie and talk about our day. Talking about an issue I’m having feels like a weight lifting off. Or, I’ll call my best friend or sister. Talking to someone you’re close to always helps. So does taking a shower. It doesn’t make much sense, but even when I’m feeling sick or tired, showering washes off the day. Something my mom taught me. Also, personally, getting my nails done, getting a massage, a walk, reading a good book, writing about what’s bothersome, lighting a candle and drinking tea all work. Being able to calmly breathe, with a clear mind usually defuses a situation I once thought badly of.

 

These are just personal tricks I’ve learned since dealing with Lupus. If you have any of your own, I would LOVE to hear them, as I’m sure everyone else would too.

 

Stay happy and healthy.

XO Allie

 

 

I am Thankful For…

Thanksgiving is upon us! YAY! This means an entire day dedicated to eating and being thankful. Literally, two of my favorite things! Oh, and the best cooking in the entire world done by my mom! Time for turkey, ham, stuffing, sweet potatoes, an arrangement of deserts (goodbye, diet!) and forty of our family and friends gathered around two tables. Last year, my age group was upgraded from the kiddie table and we quickly realized we wanted to be back there almost immediately! (hint, hint, mom!) Between dinner and desert, we have the ultimate game of manhunt. Seriously, one year we even made t-shirts. It’s pretty much the best day ever. So, in honor of my all time favorite holiday, I wanted to pause and look at everything I am thankful for.  

I am thankful for this life. I know, it sounds cliché, but it’s absolutely true. Lupus has taught me patience and understanding. I’ve learned to listen to my body; when it needs time to heal or sleep, or when I need to kick start my energy so I don’t fall into a rut. I still wake up every day (regardless how I feel). My feet still touch the ground when I get out of bed. I’ve learned that I can help others. I can make a difference. I don’t know if I could have done that if I were “normal.” I have an amazing family and wonderful group of friends. I get to go to a fantastic school, travel when I can, and live my life the way I want to. 

I am thankful for my doctors at the North Shore LIJ Health System. Without them, I am not sure where I would be today. They truly have gone above and beyond with all my health care needs. From holding my hand the entire time during a transfusion to watching me horse show at The Hampton Classic, they are each remarkable and I am so blessed. 

I am thankful for the S.L.E. Lupus Foundation and Lupus Research Institute. I will never forget what they’ve done for my family and me. 

I am thankful for the little things. For the smell of the seasons changing, smiles, the burn of a hot chocolate mug against my frozen fingers, for my heated blanket on my bed, for hugging my little dog, for chocolate covered pretzels, big cozy sweaters, good books to read, day planners, Disney and big bottles of water. I am thankful for having horses in my life. They’ve taught me compassion, love, companionship, respect, value and sportsmanship. 

I am thankful for my parents. Their support, love and generosity turned me into the woman I am today. My dad’s work ethic and willpower continue to inspire me to become a better person. His strength makes me stronger. My mom’s patience and beauty encourage me to always grow and to love unconditionally. I am thankful for my younger siblings. My sister, Dani, is my best friend. Her strong mind, and gracious heart shine a light on her beauty. Her singing talent is captivating and I am beyond excited to watch her become a star! My heart melts with my brother, Nico. He’s so simple and goes with the flow. He influences me. I am thankful for the rest of my family. Whenever I need them,they are always just a phone call away. 

I am thankful for my boyfriend, Evan. With everything I do, he’s right there behind me, supporting me and cheering me on and if I were to fall, he would catch me. For holding me when I’m sick, and cooking me the most delicious meals, he has my back. I am incredibly lucky to have him in my life. I am thankful for my friends. For taking the time to listen to me when I’m having a bad day, or for lying in bed with me, eating chocolate covered pretzels and watching Sex and the City marathons. For going to get tested to be donors for my kidney transplant and for always willing to help. Their love and support show me I can accomplish anything. 

What are you thankful for? What are some of your Thanksgiving traditions? Comment here, on Facebook or in an email!

Have a happy and healthy Thanksgiving! Cheers!

XO

Allie 

Hello and Welcome! An Introduction!

What defines us as a person? As an individual? Who are we? What makes us? What is OUR identity?

My name is Allie Paradysz. I’m 24, attending Sarah Lawrence College for my masters in creative writing: nonfiction. I am a writer. I am a nationally ranked equestrian. I am an athlete. I am a blogger, philanthropist, sorority girl, a fashionista, a daughter, a sister, a girlfriend, a best friend, a friend, a classmate, a stranger, the list goes on. Oh, and I’m living with Lupus.

I was diagnosed in early 2001 after a few weeks of uncertainty: common for the “testing period.” I was 12. Preteen, pre menstrual cycle, my body out of whack trying to change into adulthood, but fighting itself, the way Lupus usually does. I wish I could remember my reaction. I remember feeling sick around Christmas and waking up to a lump on my throat. Screaming to my parents that I had cancer, my dad took me to the pediatrician (turns out just a swollen gland) and was given penicillin. Well, my body had an allergic reaction, which landed me in the hospital-for the next 2 months! Finally, I was diagnosed with Lupus. Lupus Nephritis.

Confused and concerned, I never remember asking, “why me?” Instead, I asked, “How is this going to improve me?” Perhaps it’s my personality to never look at the glass as half empty. Maybe it’s who I am, or maybe it’s just that I never thought about it until I was older. 18 to be exact; when I went to college. I was on dialysis for 4 months and then had a kidney transplant. I was 21. Now, I’m better than I ever was. I maintain a healthy lifestyle- I work out 5-6 times a week, I eat well, I have a part-time job and go to school.

If there is one thing I believe in, it’s that everything happens for a reason. That we are given the life we are in because only we can handle it. I believe because I have Lupus, I have made others tougher. A good friend told me the other day that she thinks of me and what I went through daily. She uses me as a constant reminder that her own health concerns can be conquered.

Lupus has never, and will never define me, but it is a part of me. A part that pushes me to be stronger than I ever thought possible. A part of me that inspires others to show courage in difficult situations.

How do you define yourself? What’s your Lupus story and how has it shaped you into the person you are today?

XO

Allie

Volunteer Blogger on Behalf of the S.L.E. Lupus Foundation