Monday, June 20, 2016

A Place Where We Belong

I feel like I've been going 100mph the past 2 months!
If it wasn't a family surgery, it was my doctor appointments, class, and a few camps.

I feel like I haven't caught my breath, let alone have time to sit down and write.

But while there has been so much that happened, probably the most important and my favorite, is that I attended Kid's Arthritis Camp and Autism Camp this year!

Now while I was only at Autism Camp for a few days, It was an amazing experience to get to hangout with those kids. Truly something I've never gotten the chance to do and I learned so much!

The week before that, I had Arthritis camp. I look forward to that every year.

One thing that these camps had in common, is that all (well mostly lol) of the kids truly felt like they belonged somewhere.

I think we often forget what it's like to be in a place where literally everyone in the room knows what it's like to be feeling what you're feeling because that isn't something we come across very often.

But it's wonderful to not have to think about others thoughts about you or worry about feeling a certain way because we've all been there. We all know.

And when you take that out of the equation, you can enjoy just being there and having that experience.

I'm lucky to get to know what that's like and I wish I had more of it.

I find myself at times missing all of my best friends because I'm in a world where you are taught to be empathetic for others, yet you have no idea what they feel like. Your job is to put yourself in others shoes and help them, but you don't know what size they are or what type of shoe they are wearing.

I love going to camp because we all wear the same thing. My shoes may be a little bigger, but that just means that I can give my shoes to the next kid.

Our special "talk time" with Dr. Dorian went shockingly longer than normal, but it was cool hearing the kids talk about what they encounter outside of camp and how they are then treated while with us. Then I normally say something, followed by our Director, Cat, saying something.

She and I both have arthritis and the kids find that really cool because I think it gives them something to look forward to. They can see that we are making it work, and it gives them hope. Well, at least in my mind that's what I think lol! I look up to Cat and hopefully, the kids look up to us.

I thought it was stupid when I was camper. I thought "why am I here?", but now, I can't wait to go back because it's one of the few places that I feel like I really belong. I took it for granted then.

I was able to share with some of the kids that I had been off prednisone since January 20th and they were amazed. I loved that I could say that and they knew what I meant and how important that is!

I went to the doctor today and my labs are great and I'm doing alright. It's been forever since I've been able to say that!

I wish I could tell the kids that they have so many things to look forward to and how times will be hard, but you can make it through...and I think I did that (I was sleep deprived for a few nights lol). But the one thing that they need to know right now, is if you find a place where you feel like you truly belong, treasure it, don't take it for granted. Cause one day you might be in a Ph.D. program and find yourself missing all of your best friends and family because you feel like you're in another world and you might not have time to catch your breathe when you need it the most.

Stay tuned cause I'll be posting pictures when they get put up!!

Wednesday, June 1, 2016

From JRA to Motherhood By Devon Johnson

The next person in my Guest Blogger Series happens to be my first friend with JRA. I can remember meeting her at kid's arthritis camp when we were two of the oldest campers there. I thought I was not going to like camp and I remember not wanting to stay...then we met. Devon and I spent the rest of camp hanging out by the side of the pool (we didn't want to get wet) and trying to set Cat up with one of the lifeguards on duty. That was almost 10 years ago! I asked her to write something for me this week because I think she has gone through something that all women with autoimmune diseases debate about experiencing: motherhood. 

For me, I'm pretty dead set against it (for the time being) because I think the idea of my children having what I have or seeng me in pain overrules my want for children. But reading Devon's post and seeing that she still struggles with the insecurities that come along with this disease, reassures me that others think and feel the same way. 

I hope you enjoy what she has to say and if I could find the picture of us at camp, I would totally post it! lol! I'm gonna go dig for it now :) 


13 years old is an awkward stage. I was  just getting into middle school, I realized that one annoying boy now seemed sorta cute, I actually would care if I brushed my hair that morning, and getting a cellphone meant I was now officially "grown". I never knew my life was about to do a 180. 

One day after school I was outside practicing softball with my pawpaw. I sport I truly loved, aside from tumbling. Everything was fine. I was running, swinging the bat, catching & throwin balls, and having a blast. Like I said, everything was fine.
That night I went to bed as usual, nothing different, except for the fact I forgot to use the bathroom before I went to sleep. I woke up & looked at my clock (on my cell phone of course) that read 2:13, I never forget. I leaned up, dropped my legs off my bed, went to stand up & fell. I mean I really fell. Laying there, I thought to myself dang that really hurt. I went to get up and realized I couldn't. My legs weren't moving with me. At first I was confused by what was happening. Then I became scared and my heart began to beat faster. It was true, I really couldn't move. I was stuck & shocked.
I laid there. I was able to pull the covers over me, and I just laid down. I never once called for help and I really don't know why. I'll never forget that night. I was terrified. I was hoping I was in a dream, and I would wake up and be okay. I had a million thoughts runnin through my mind. This CAN'T be real. 

5:00 comes and I'm still awake laying in the floor. I hear my moms alarm go off. She hits snooze. 5:10 comes, snooze again. (Thanks mom) haha then 5:20 and I hear her door open. I do the weird whisper yell sorta thing. "Mom"... no answer... "moooom" no answer "MOMMA!" and my door opens wide. My mom laughs and asks why I'm in the floor. That's when it really hit me, and that's when I began to cry. I had to tell my mom I needed help & I couldn't get up (like the granny on the life alert commercial). Little did I know that was going to be the first of many times I needed help.
We go to the doctor, she thought I had the flu. Ran all sorts of tests but couldn't figure anything out, but I was getting worse. Now my arms are stiff. Now I'm really getting scared. What is wrong with me?

Next thing I know I'm leaving the doctors office to go to Sacred Heart Hospital. I'm thinking just for some more test. Well I was sorta right... more test but while I was being admitted. At 13 I didn't understand that. I thought only old people stay at hospitals or really really sick people.... the question still in my mind "what is wrong with me?" I was just fine now I'm quickly becoming what I thought was paralyzed!

2 weeks go by of countless test. Nothing. Finally a specialist comes in, one that everyone said was just great. By this time, I had lost hope. My body was in such pain I couldn't walk, sit, use my arms, nothingggg without help. 
The specialist orders a few test and told me he would be back. Greeeeat. Well the next morning he was back & I was not ready for what was about to happen. 

I got the news I had severe juvenile rheumatoid arthritis. I truly thought it was a joke. It most definitely was not. 
Arthritis? At 13? No way. Isn't that an old people problem? But I'm healthy? I'm active? 
The treatment process started. First step? Prednisone. The drug that makes you feel better but look awful. I went from a size 2 to 10 quickly. Hello stretch marks at 13..... I was suppose to be getting boobs & a butt not just huge and swollen! 

This wasn't fair. I was getting mad at everyone and everything. 

Once we figure everything out I'm free to go home & just have follow up visits. I now have a ton of medicine I have to take like I'm 80 and a body that feels like it too. Oh, did I forget I had to order a wheelchair too? Yeah, a wheelchair. At 13. 3 weeks ago I was fine, now my this was my life and I didn't know how to handle this. 
 was so excited to go back to school. Something that was normal. Friends, lunch, classes, and just being normal.... or so I thought. It turns out kids are mean. Very mean. I quickly learned I didn't really have friends, or I should say the ones I had weren't true. I came back with different looks and a wheelchair but my ears didn't change, nor did my eyes. I heard the mean comments, the giggles, and I saw the stares. 

Dealing with bullying was harder than dealing with life changes. So hard it got to the point I chose to be homebound rather than go back. 
It took a while probably a year for everything to get under control. My pain levels, walking normal, and looking a little less like a blow fish.
Things remained good for a while. I was on a medicine call Kineret. It was a daily shot but I could go a couple days without it and be fine.
I went back to school for 8th grade, then went on to high school doing just fine, no problems. I really was a normal teenager in high school. 

Things began to change after high school. I started hurting more often. The doctor told me to stop skipping shots and take them everyday, so I did. Still hurting. Called doctors again, they said take 2 a day. I did.... still hurting. 
Here comes another 180 turn around...

While trying to figure out my medicines, I thought I caught a stomach bug that was going around town. Nothing too serious. I was sore, but also throwing up, had fever, and was just feeling like poop. 
Well, my fever broke and the next day I thought I'd be ok to go to work at the ice cream store I worked at. I was wrong. All I remember was I couldn't stand up for long (5min) and I just kept chugging water but wasn't satisfying my thirst. My sister took me to the ER. They couldn't figure out what was wrong so I went home.

wake up to a phone call from the doctors office saying come in, your blood work came back all messed up...
Next thing I know I'm being admitted again. This time my heart beat would sky rocket and blood pressure would shoot up too for a couple seconds then fall. My blood work was going crazy. Yet no one could figure anything out. I'll never forget one night I was laying in bed watching tv, dozing off to sleep an alarm starts going off & I looked to my mom and said "man that's for whoever that is " at the same time we both look up to see a red light blinking, we looked back at each other, I'll never forget the look on my moms face. Then the doctors and nurses come swarming in. I had no clue what was happening, but I wasnt prepared for what was about to come.

With nurses surrounding me, they just kept saying "Do you feel that?" Over and over, but I felt nothing, but I was scared. They stayed around me for a few minutes then said "it passed". Umm... what passed? I was confused. As they all leave I lay there trying to go back to sleep, then here it goes again. Nurses freaking out but me not feeling a thing.
I never thought I would hear doctors tell me and my mom "we can't treat her, we're not sure on what's going on but it's not good". Apparently my heart rate kept sky rocketing into the 220 beats per min, and blood pressure would elevate too, then all of a sudden they would drop.

With my numbers being so high, it scared the doctors. They couldn't control it or figure it out. 
The doctor came in & told us they couldn't treat us here, we had to go to Shands Hospital in Gainesville. I thought awesome I get to go home for the night. Nope, truth was I wasn't going to be home for a while.
I was told they couldn't let me leave, that I had to be life flighted down.

Ummm what? 

I've never even been in a plane before! I had 30 minutes to tell my family goodbye. Boy, THAT was hard. Then me and my mom were takin off.

We arrived at Shands in the weeeehours of the morning, and even then they started treating me. I stayed in ICU. After several, and I mean SEVERAL test allllll around the clock (I'll die before I do another bone marrow test) they figured it out after 2 months. Oh by the way when I say around the clock I'm serious, I had to get CT scans and MRIs at 11 at night... the place never sleeps. Doctors never leave. It's an awesome place. Oh &&& all while this was going on I was not allowed to leave my room. Ever. I was high risk. When doctors came in they were required to wear a mask, gloves, and the medical cover up thing. 

But like I said anyways we finally found the answer. I had Macrophage Activation Syndrome. Feel free to Google, because I had to too, but basically my body was shutting down. Quickly. But Shands saved me, and the truth is I don't even know how. That whole time is still such a blur to me. I just know I became okay. I made it. 1 out of every 3 people die within 3 years of being diagnosed. I'm still here. I was released to go home with an unbelievable amount of medicine.
I had to take these chemo pills that were the worst thing in the world. My fingers and toes always burned. So, I took it upon myself to secretly stop taking them.... yeah.... kiiiinda a big deal. But I did. I stopped everything. And I'm still here! (Please don't do what I did) 

I did alright. I just took arthritis medicine.

I went back and finished my college and actually met my husband and fell head over hills, as did he.
Then reality it. at 20 years old I had to tell the man I loved there was a littttle bit more to me that he needed to be aware of. I told him that only 2 short years ago I was in terrible shape. And with all the medicine I've taken idk if I'll be able to give you a family one day. It was a lot to take it. And I'll never forget pouring my heart out to him crying. He told me never to worry, he's not going anywhere. The following year we married. 

Then we became pregnant. Excited but scared. Countless prayers were said. Everything was thankfully fine with the baby. I had to stop all arthritis medicine though. Some days were awful, I could barley take a step. Some days were perfect, no pain at all. Our baby boy was born perfectly fine on April 14th, 2016 weighing a whopping 8 pounds 4 ounces. He is the light of our life.

It was so nice to be pain and medicine free that I forgot the reality of everything. I forgot until one morning I woke up and could barley move. I call the doctors to get quick relief and we're currently in the process of seeing how were going to continue to treat it. 

Currently? I'm okay. My hips are my main problem. With a new born it does scare me a little, I wonder what if I can't walk to tend to his needs. I don't walk with him if I feel weak at all. And for that, I hate arthritis, because it really does affect the way I can love and nurture my child. I was not able to breast feed because of the medicines I went on to give me relief. My husband is my saving grace. He calms me down when I'm upset and reassures me that I AM a good mom. Hopefully I can get some real relief and good treatment so I won't feel insecure at times.

So from 13 to 22 I've had arthritis through multiple stages of life. And it doesn't really seem to get easier, you just learn to adapt.

I pray everyday we find a cure.