The Confidence Chronicles

It's currently 5:30 on a Thursday evening and I've already showered and climbed in bed. If it wasn't so early, I would have already taken a benadryl too.

That's the perks of having a compromised immune system; rashes and extreme itching will come out of nowhere and stay for days.

Don't know why.

And yet, I lay here and find myself either wishing for it to go away or for it to get worse because that's the only two options I have.

Adele is sitting here looking at me, wondering why we aren't on the couch or outside on a walk. Thankfully, we had a puppy play date this morning!

It's amazing how less stressed I am with her around. I don't think people understand that the security of having her with me is the number 1 thing I love most and appreciate most about her.

Life has been crazy since I've last written and it'll be like this for the next year.

But one thing that happened this week has stuck out more than anything else.
I had my supervisor tell me something that caught me off guard.

He said, "I'm going to ask you a personal question. Do you think you're intelligent?"
I paused and so many thoughts rattled in my brain.
Where is this going? Did I screw up a session? Does he not think I'm intelligent? Is this a trick question? What do I say, do I tell him the truth? Really, where is this going because I cannot read him right now?

And because I was caught so off guard, I said in grand Kara fashion, "Well, I wasn't in gifted and talented when I was in school" and he laughed and said, "that's not what I asked"

I sat there and after a minute I finally said, "It depends on the day"
He said, 'That's what I thought"
Once again, I'm sitting there with absolutely no idea where this is heading and he begins to ask me another question.

He says, "what makes you a good psychologist?"

Well damn. There goes my easy supervision session out the window. Here I am thinking that maybe he'll tie in the intelligence thing with following my gut in session and we'll wrap it up and I'll go on my way.

Nope. An hour later and I come out of one of the best supervision sessions I've ever had, completely blown away.

Now you're probably wondering what was said in response to the questions and I'm not going to tell you everything, but I'll tell you what's applicable to the post.

It came around full circle, back to the intelligence question. He wanted me to know that he thought I was an intelligent person and that's one of the things that makes me a good psychologist, but that he knew I didn't fully believe I was an intelligent person.

Basically, he wanted me to know that he knew what the little voices in my head tell me all the time.

He said, "you're an intelligent woman and I want you to grow into the person, the intelligent psychologist that you already are". And yes, that's word for word because he made me write it down.

He also told me that I needed to figure out what was holding me back from truly believing it, which is why I'm sharing all of this with you.

Any given day, my anxiety or health can get the best of me. But after 25 years, I've learned to become a good actress. Like, I bet none of you knew (the ones I didn't tell) that I have literally been dying to scratch my skin off for over 6 days or that I haven't taken my muscle relaxer in 5 nights and my hands are so stiff I could play the perfect robot right now. And if you could tell, you need to let me know because I need to up my game.

I've become an imposter.

I bet you know where this is going now!

You could walk into a graduate classroom and ask if anyone has ever felt like they don't/shouldn't belong and I bet you 10 dollars that every single hand will go up. Every. Single. Hand.

Within the last week, I can't count how many times I've had conversations with people and this has come up.

The imposter syndrome.

It's real!

When successful people don't feel that they are smart enough or feel like all of their success is due to luck and not hard work, they begin to feel like an imposter.

You can ask me one day and I'll say I love being here, I truly feel like I belong, that I'm proud to be a doctoral student, and that I feel like I know what I'm doing.

Ask me the next day and I'll tell you I'm losing it, I have no idea what I'm doing, I hope I passed that exam, I hope I can make it through my milestones, and graduate on time before they realize I know nothing.

But I don't know nothing. I'm an intelligent woman....or so my supervisor says. No, I am. I think?

It's the struggle to believe that you belong constantly fighting the thoughts that you aren't good enough.

Who put that in our heads?

Did you know that the National Center for Education Statistics reported that 5% of graduate students reported having a disability. Did you know that only 31% of students with disabilities who graduate high school even go to college?

So you might read that and think, "oh my gosh that's awesome, you've made it so far" and I'm sitting here thinking "only 5% make it, you're going to fail, you're going to get sick and have to leave, you aren't good enough to be in that 5% because what have you done to get here, now you're using your disability as an excuse, you need to stop thinking that you're qualified to be considered in this category, you know nothing jon snow"

Those are the thoughts that I have.

So I put those thoughts in my head. I put pressure on myself to be perfect, to succeed, to make a difference, and to prove that my professor made the right choice in admitting me into this program.
I'm the one comparing myself to others and allowing myself to feel like an imposter, when in reality, I deserve to be here. I put in the work, the time, the tears, and the money.

I am not an imposter.
I am an intelligent woman.
She says confidently.

Or is that just the imposter speaking?

I guess that's just something I still need to figure out, stay tuned for more!

The struggle bus is real.

I must admit that while these last few weeks have gone great, there is one thing that I experienced that I must write about. In my 25 years, I can count on one hand the number of times that my disability has been questioned or I've received looks/comments/judgement from others. And to me, that's not a lot! Many people have experienced this and it's time I talk about it. I know in one of my earlier posts I've discussed looks I've gotten for using my handicap sticker, but this is taking it a step further.

It's no lie that I've struggled over the years accepting my arthritis as a disability. I still have days where I don't like to admit that I have it, but I've come a long way from crying about it because I was angry to writing a blog informing others. I've grown and so has my ability to accept that arthritis is a part of me.

Over the last few weeks, I've gone back a few steps in terms of struggling with whether or not I deserve to have Adele. Everyone I met at training was wonderful, respectful, and amazing, so it's nothing against them or the experience I had with them. But I'd be lying if I didn't say that the first few days were a bit awkward. Now I'm one for always loving the idea of people asking me questions about my arthritis. Go for it! I'd rather you ask than stare....and that's what they did. I appreciate that! I just could not get my brain to turn off though. I wasn't flaring during the training, with the exception of one day in which I did not feel great, so to others I looked like a normal able bodied person working with a service dog. Throughout the week, I received questions from volunteers, people at the mall, and even people after training that I would run into asking if I was training Adele and why I had her. I even had 3 people ask me if she was a seeing eye dog lol! Now, these are simple questions that were not meant in a harmful way, I understand that! But for someone who was already struggling to accept that she deserved this, it made things a bit more difficult.

I made it through the interviews and the paperwork, but no matter how many times I told myself I wouldn't be here if they didn't think I was worth it, it still didn't register. All because I wasn't sick at the time. Which really doesn't make sense. During my on site interview, I was flaring, so they were able to see what it was like for me. For that, I am grateful. It wasn't until this past week when I couldn't bend the fingers in my left wrist and I couldn't fully bend my left knee that I truly felt deserving of Adele. She helped me reach a few things that I had dropped and she turned on the light for me when I sat down and couldn't get back up to do so. I knew before the training and I know now, but I'm not sure what happened in my head during the training. I guess I was the only one doubting myself.

I know this probably doesn't make sense to any of you, but if you've ever had to defend the fact that you have a disability, you know that the hardest one to believe it, is you. I've had it 19 years and I still struggle with it! Gotta love having an invisible disability lol!

I would love to say it was just me going through this, but another man in my training experienced it as well. He actually gave me the idea for this blog post. He came into class one afternoon and said, "you'll never believe what a volunteer just said to me". He went on to tell me that she said he didn't look like he needed a dog. I was shocked. She didn't mean any harm by it, it was just the way she said it. I asked him what he said back to her and he said he was blindsided so he just briefly said that he was here because he needed help. I think he may have mentioned his disability to her before he got up and walked off. He said that we needed to have go to responses for people who say comments like that! I thought it was a great idea! So here are 5 go to's that we talked about and that are actually pretty common...

Things not to say to someone with an invisible disability and how to respond to those who say those things:


1. "But you don't look sick"
Thank you, I am very grateful that I've been able to remain active by taking my medication and continuing to exercise to keep mobility in my joints. I have my good days and my bad days!

(You never want to get an attitude with your responses because it can turn the other person off to anything you say. So try your hardest not to give a sarcastic response!)

2. "So have you tried ____, it really helped my great aunt's ex husbands brother?"
I have, thank you for suggesting that.

(literally leave it at that. Or a "No, I have not! I'll have to look into it". Simple answers with this one or they will go into every detail about it, where to find it, and how much it helped their relative)

3. "Were you just faking sick, or do you really have a disability?"
Nope, nope, I really have a disability.

(this one is tough for me because I've been asked it before and I lost my temper. It happened in high school after coming back from months off and my ex's best friend said this to me and I think I responded, "were you dropped on your head as a baby, or are you just this ignorant". I don't think I've ever been that upset before. I've grown up a lot since then, but that was one of those moments that if you're blindsided, you can react in a way that you wouldn't normally react. So just keep the answer short and sweet...oh and know that it has been asked before!)

4. "Wow, you're not old enough for that"
Yeah, I was diagnosed at 6. There are actually 300,000 kids diagnosed with JIA every year.

(By throwing in a fact or important detail, it allows the person the chance to not only learn something new, but it takes away the chance for them to question your credibility...yes people actually do that)

5. "Why do you need that handicap sticker/service dog?"
Well, I have a disability that requires me to need assistance and by having these things, it helps me.

(Technically if a business is asking you about your service dog, they can only ask if she is one and what kinds of commands does she do. Most people aren't this blunt and won't ask the question this way because it's rude....but it does happen. This is also one of those moments where you want to give a sarcastic answer, like why do you need that extra slice of cake...but don't give in!)

Now always remember that it's not what you ask, it's how you ask it. I know that the majority of people I talk to are innocently asking because they don't know and would like to learn more. And I'm always very open and kind in the way I respond. So just be mindful of how you ask and answer the questions. Nearly all of the above can be asked in a nice way or you can change up the sentence and it can have a completely different meaning.

And when you want to know, always ask! :)

Next stop on the struggle bus: School's back!

Hello, It's me

I'm not sure why everyone keeps saying that or singing other funny songs when they say my name. My person says it has something to do with some singer, but I'm not sure what that is.

If you haven't guessed by now, I'm Adele! 

Yep! That's me and my person right there on the day that my puppy raisers handed over my leash to her. 

A lot of people have been asking and commenting about me, so I figured I might as well introduce myself and let you know what I do!

So, I'm adele. I turned 2 on March 30th, I like long walks outside, cuddling on the couch, and helping my person do things that she has trouble doing. I also like to play with my Kong and run really fast in circles trying to get my person to throw the kong for me! I know over 40 commands that I learned at my puppy college, called CCI. That's short for Canine Companions for Independence. I went to school with a lot of other dogs and we learned how to help people. I can open doors, turn on lights, open the big box where my person keeps all her food, and I can pull off her socks or jackets! I love it when she drops things and I get to pick them up for her, my person always gives me a rub behind the ears for doing that one! 

At night, after our cuddle time, I go to sleep in my kennel. My person said she was worried that I wouldn't like it in there, but my puppy professors told her that I felt safe in my kennel. They were telling the truth! Sometimes, when my person is busy, I'll just go lay in my kennel because I can. 

Some people may think that I'm sad or not a real puppy, but the truth is, I'm happy to help my person and I get play time and cuddle time just like other dogs! I even get to see more people than other dogs do because I get to go places with my person! I may not get treats (not that I even know what those are), but my owner gives me praise and pets when I do a good job, sometimes I'll even get some of my kibble before it's time to eat if I do a really really good job! 

Some people want to pet me or make kissey noises at me when I'm with my person, but I just keep walking. I know that if I go towards them, it won't be helping my person and I need to help her. I fell for it the other day and got a quick correction, It was a nice reminder that I needed to pay attention to my person and not the old man whistling at me. Sometimes little humans come up to me and want to pet me, but my person knows that I'm working, so she will either walk us faster or she might let them shake my paw. It depends on how many people are near us, she says that she feels like she just had a baby human and is afraid of others bothering me. I think she is just protecting me like I protect her. 

Overall, I have a pretty sweet life. I hear we are going back to a human college in a few weeks! I know my person just finished a two week puppy college training where she learned how to work with me, so I wonder what human college we will be going to next! My puppy raiser took me to a school called UNF with her, so I wonder if it'll be like that. Either way, I'll be with my person helping her when she doesn't feel well and that is enough for me! 

My person said that if you had any questions, just to ask! She also said you should check out where I went to puppy college at, CCI! I loved it there and so did she! They have a Facebook, instagram, and website where you can see other puppies just like me! 

Well thanks for letting me bark about myself! If you see me around, just ask my person if you can pet me before coming to say hi, I might be busy helping her out with something but I know my person would love for you to get to see me in action!

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!!

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 :) 

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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. 
I
 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.


I 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.

How to Love Someone with an Auto Immune Disease by Elise Schaefer

This post is something new I've been wanting to try and I hope you like it. God puts people in your life in funny ways. Elise was in a class with my brother and one day he overheard her talking about the medication she was on. He called me and told me that he thinks this girl in his class had what I had. I immediately wanted him to meet her just so I could lol! We soon became wonderful friends and I have to say that she has really helped me in times where I feel like nobody understands. I know I can text or call her and she 100% knows the feeling. She is a great support in my life and I hope that you enjoy what she has to say :) 

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Lovingly nicknamed the Tasmanian Devil by my family, it very quickly became obvious something was wrong -- my whirlish energy randomly depleted, naps in the middle of the day, and even asking for help as a strong-willed four year old was completely out of the ordinary. All these little mysteries unraveled the morning I woke up, unable to walk, with a knee -- hot and red -- nearly tripled in size.

The diagnosis -- there wasn't one. Tests were run, cancer was speculated, everything came back negative. My blood work was confusing at best, giving little help in the search for an answer. The only plausible speculation, Juvenile Rheumatoid Arthritis: an auto immune disease. Despite finding a possible cause for my symptoms, my Antinuclear antibody (ANA) and Rheumatiod factor were both negative, leaving doctors stumped.

Living in England at the time, my mom decided to make pit stop at Denver Children's on the way to see her parents. There, the diagnosis was confirmed, my knee was drained, and steroids injected -- the first of many rounds in Children's Hopsitals. My particular diagnosis, while not so rare, was quite interesting. My arthritis is Pauciarticular, meaning four or fewer affected joints. About 30% of children with Pauciarticualr Arthritis also receive an Iritis diagnosis, a strain of the disease affecting the eyes. Within this 30%, only about 5% of children are ANA negative, and within the same 30% only 5% carry their JRA into adulthood. We sent my picture to the dictionary company to paste next to the world "special."

Obviously, this is a diagnosis no child, parent, or family wants to receive. But to be honest, it didn't change much. God could not have provided a more perfect momma to defend me, protect me, and heal me. My childhood was normal because she made it normal. She spent countless hours researching treatments, doctors,  and clinics to find me the best possible quality of life.

God always provides the energy and stamina I need to get through the day.  Time and time again, it amazes me how he has used this diagnosis to bless me. (As strange as that may sound.) It's not a blessing I would have prayed for, but it's something I can't imagine my life without. It has forced me to rely on him for my daily manna.  Everyday He shows His love in the way he cares for me, provides for me, and heals me.

My JRA may never go into remission, it may never go away, I may always be on medication. Yet, thanks to my family, my friends, and the endless love of my God, I'm positive we will conquer this together.

How to Love Someone with an Auto Immune Disease

It’s not easy – we aren’t the easiest people to love. We so desperately try to be everything everyone needs – never wanting to fall short in anyway. Unfortunately, that isn’t always our reality. Some days, we cannot keep up. No matter how hard we try. 

We will have days where we end up in bed, unable to move, feeling defeated and beyond frustrated as our body attacks us. On these days, we need people who understand why we go from laughing and dancing, to crawling into bed. People who give patience when the day’s plans go out the window, because we can’t muster the energy for one…more...step. We need people who are secure in our love for them, knowing our lack of energy does not equate to apathy. People who understand when we are near tears and inexplicably grumpy, maybe we just need a snack and a nap.

We don’t need you to understand fully – unfortunately, you never will be able to. No amount of literature or study will ever help you fully understand what our bodies go through on a daily basis. Don’t say “I’ve felt that,” or tell us, “Oh, I’ve done that…I know your pain.” Because the truth is, you probably don’t.

And that’s OKAY! We simply need your love. Without – we feel alone, isolated, and even more exhausted knowing none of our efforts will be enough.

We need people who love us in our perfectly imperfect state – knowing there is no cure, that it will not go away – that our immune system is as innate to us as or hair color or the way we laugh. We need someone who will love our immune system the way they love our personality. It is apart of who we are, but it does not define who we are.

I asked multiple friends and family member who have lived with and put up with me for many years, “What does it mean to love someone with an Auto Immune Disease?” Their responses brought me to tears.

Speaking firstly to couples, my favorite professor and one of my dearest friends wove together a beautiful slice of advice. He has seen me through the worst and the best of my illness and has most recently watched my new relationship blossom.

I hope the following words from my dear friend touch your heart as deeply as they touched mine:

Love's perspective is guided by time...

The "new" and "unfamiliar" are the ingredients that propel intimacy in a new relationship.  Couples should spend long, long hours exploring these unknowns and relishing in the accomplishment of just "knowing" and valuing that exercise of growing closer and experiencing intimacy.  

Intimacy's offspring is ownership. It is because we are close that we feel we have a part of each other that no one else has, and this is where it gets difficult.  It gets difficult because in this stage we do not want to be wrong in our own personal assessment of the relationship, and when our ideal gets fractured even in the smallest degree, we end up upset because the relationship is not exactly what we thought it was and this is exacerbated by the desire to "set it right" or "place it back on the right track".  The image we own gets stolen from us by our own pride, and this can happen even when the best motives are present.  We do not like to "get it wrong" or misunderstand or cannot seeming meet the needs of our love, and we do not like when our partner is unhappy, sad, sick, depressed, etc.  Why?  Because it is not the image that we have chosen to own.  What must we do?

We must own another image, one that encompasses a relationship of varying phases of most everything including: intimacy, happiness, sadness, sickness, wellness, etc.  Easier said that done? You bet.

I prayed for a man who would love me in spite of my chronic illnesses -- he loves me FOR them. He loves me in my adorable moments and he loves me even more in the EGR (extra-grace-required) moments. But there will be times when we both struggle to love in the way the other needs.

This reality bought to life ‘number one’ on my list:

• Choose to own an all encompassing image of your loved one – one that includes every facet of their life. 

In truth, my loved ones don’t need this list – they live these acts of love daily. I’ll take a leap and say your loved ones don’t need this list either.

This list is for the rare, grey days when our friends and family feel discouraged. I compiled these responses to remind our loved ones what a phenomenal job they already do:

• Sometimes doing nothing with her is the best way to love her.

• Listen - and ask. People with autoimmune disease don’t look or seem sick.  It's not the flu or a broken arm.  Ask your friend how she is feeling and really listen to her answer. And you may have to ask “What’s wrong,” a thousand times before you will get a real answer.

• Even though she doesn’t have the energy to do certain things, she will still want to do them. You may need to find a creative way to make those things happen.

• She doesn’t need you to baby her. She needs you to be the one person who treats her like she’s normal.

•  Sometimes she is just "done"...done talking, done engaging, done listening, just done.  Do not try to figure it out, do not try to change it, and do not try to make it right. There is nothing wrong, and It is not personal It just is. She is recharging.

•  Do not try to fix everything.  We must be willing to let a dull, semi-unharmonious air hang in the room for as long as it needs to.  We must admit we cannot meet every need, solve every problem, or right every wrong.  The last thing she needs sometimes is us.  Let her be.

• Sometimes she won’t want to be touched and no that does not mean she doesn’t love you. It only means she’s hurting.

• Make her laugh. Don't be afraid to crack jokes about it all, humor helps!

• She wants every part of her heart and body to be cared for, it’s fragile and has hurt – but is still so strong. You must take care to cover those sensitive parts with grace and love.

• Treat her to little things that make her feel happy or better - it could be something as small as food she can eat or a pair of slippers, or as big as a plane ticket for her to come and let herself be taken care of when she needs it.

• When she can't beat it, join her.  For a day on the sofa or a drive to the doctor's office.  Autoimmune disease can be very isolating.

• Trust that the relationship is fine if she does not respond right away, text you right back, or call.  She is fine, you are fine, and the relationship is fine.  Anxiety is an itch you just cannot scratch, and the more you try, the worse it gets.  Just trust her.  She will bounce back before you know it.

• Acknowledge that you will never understand exactly what she is going through, and this is the toughest of all because you love her and want to know her fully.  But on this one, you just can't.  This means sometimes all you will be able to do is love her and just be there.

• She doesn’t need you to carry her on the days she’s too weak to walk. She needs you to stand beside her and remind her how strong she is.

3+4

I have one final and a day left until I can enjoy my week off.
But which one will break me?

I'm supposed to study all day tomorrow in preparation for my exam but my mind will be elsewhere.
I'm hoping that by taking the time and writing it all out tonight, tomorrow won't be as hard.
But I know that's a lie.

So I'll write out all of my thoughts for you to read and lock away my feelings as a means of really bad coping (I should know better, right?!) and move forward. Because moving forward is what you would want me to do.


Papa,
I cannot believe that it has been 2 years. Wow. I remember that morning like it was yesterday. I woke up and checked my phone because it was Becky's birthday and I wanted to know if she had gotten off the cruise ship so I could call her. Don't apologize, I know that you didn't get a say in the day! We always joke about God's timing and that was proof that it really is up to him. David walked in and said you were gone. I think it took me a minute to register what he meant because I had just woken up, but as soon as I did, I thought about Michael. You always told me to look out for him and the moment I needed to do that the most, I couldn't. I remember messaging a few friends he had there so they could go be with him until mom and I could get there. Those were a rough few weeks, but I remember every single detail. I remember driving to Michael's Blue Key event that you looked forward to so much, I remember finals week, I remember arguing with Michael in the car and poor Leah having to play referee. I remember driving by the funeral home with your name on the sign and I could feel my heart stop because I had forgotten to drive the other way home so we wouldn't see it. I remember all of your students coming to say goodbye. Papa they were so honored to be taught by you! I think every single person who met you felt that same way. Can you believe 803 people came that day?! And don't you dare shake your head at me right now, you deserved that. I know you can see how much our lives have changed in the last 2 years, but let me just tell you that we miss you every single day. The girls are growing up so much. I know you are so proud of them. Michael is nearly finished with his first year of law school. I think you and I both agree that his arguing is getting him somewhere! Mommalaine just completed her AA type group! I know you want her busy, so I'm glad she's doing it. I'll stop recapping everything now because I can hear you telling me how stupid I sound lol! I miss arguing with you when you're being stubborn. I miss hearing you tell me to calm down. I think it's hard to explain just how much I miss you because you were more than just a typical grandfather. When I tell people about the family I explain that there's not just 4 of us...there are 10...there was 10. We couldn't just go eat without all of us going. We did everything together and even 2 years later I have to still count in my head and remind myself that you aren't here anymore. I think one of the hardest things in you leaving was knowing that there is never going to be another man as great as you on this earth. All of my friends can agree! I think it's safe to say that we all want a guy to love us and treat us like you treated mommalaine and the truth is, nobody will ever compare to you. Don't tell me to stop! I know you're rolling your eyes at me, but you know I won't settle for anything less! I get my stubborn side from you. "Kara Drive to McDonalds for the coke, but I want the burger from burger king" or "when I die you've gotta drive me around one last time". And for you, I did both! I hope that I can be as strong as you, as kind as you, and as loving as you. And each day until I see you again, I'll do my best to remember that every day is a good day.
I miss you and I love you,
Kara

P.S. Layney and Rox would want me to tell you, 3+4!



Incase you're reading this and thinking, gosh this was a random, depressing post...here's a little background:

http://ribbonsbowsandhospitalbracelets.blogspot.com/2014/05/3.html


While I know today wasn't related to anything close to my RA, I have some tricks up my sleeve for the future. I'm gonna have a guest blogger coming up, get excited!! It's gonna be good :)