And before you ask, no, it's not the good kind of buzz.
I didn't think about describing pain like this until after the conference. It's really the perfect example of what we feel like on a day to day basis.
I can't take credit for this thought though. It was said by Ana Villafane during one of the breakout sessions and everybody in the room related to it.
She was saying how we all have a daily buzz, like a certain of level of pain we deal with daily. Then, during that day or when you're having a bad day there will be a spike of pain.
Imagine a heart rate line if you're a visual person.
Not many people seem to realize that this is a daily occurrence. While we may look okay and act okay, our bodies may not feel okay.
We are really good actors!
Or at least try to be.
So we are constantly dealing with this buzz of pain that never seems to go away.
At this point in my life I don't really notice the buzz anymore. It's like the sound of the air conditioner, it becomes background noise that you don't pay attention to anymore.
That's just me though.
Everybody is different.
I do believe that we have higher pain tolerances because of the constant buzz that we deal with.
I'm pretty proud of my high pain tolerance!
You've gotta find the bright side somewhere, right?!
It's the spikes that are hard to deal with.
When you get so used to the idea of "normal" being a certain level of pain that the change catches you off guard.
You know you can handle it because you've done it before, but it's almost like you've got the feeling of "I have to deal with pain on a daily basis, why do I have to deal with hurting even more".
Bad days are called bad days for a reason.
I remember about 2 or 3 years ago we were changing my meds because I had plateaued and it just wasn't helping anymore. I flared constantly. My buzz wasn't a buzz, it had flipped and I was just spikes all the time.
I can remember one day just breaking down and having a total temper tantrum at 21 years old.
I was sitting on the floor in my closet because I didn't want my roommates to hear me crying. I probably couldn't even help myself get up off the floor anyway lol!
I slapped my closet door because I just wanted to feel something other than the pain I was feeling at that moment.
Maybe it was the idea or curiosity of whether I could feel more pain than what I was experiencing.
I'm not sure.
I know it probably doesn't make sense to you, or it might.
But when you have moments like that where you feel pain all the time, you just need something to reassure yourself that yes, you are normal.
Don't worry, my hand was fine lol!
I didn't even have the strength to slap it hard which is the funny part!
Half the time it's not the pain that gets you.
It's the emotions associated with the pain.
The weakness, the feeling that this will never go away, the "why me", and the thought of just giving up.
If the pain wasn't enough, you've got the mind games that come along with it.
I hate the saying, "mind over matter".
No matter what I'm thinking, what I tell myself, or what I believe...the pain is still going to be there.
I could be having all of those negative thoughts and it won't change the amount of pain I'm in.
It can make me feel like crap.
It can make me depressed.
But it doesn't make the pain go away.
The same goes for positive thoughts, which I do my best to think!
These thoughts are better! When you're having a bad day it's easy to let the negative thoughts take over. But you have to let the angel beat the devil on you shoulder.
"You are strong"
"You can handle this"
"Don't give up"
While these are wonderful and the counselor in me applauds all of us for thinking of them, it's not going to change the amount of pain we're in.
That's why I dislike "mind over matter".
So you have the emotions, the mind games that come with that, and then the pain.
That's what you get on a bad day.
Plus whatever you have going on in your life at that time lol!
It sounds fun doesn't it?
Don't think that every flare or spike is like that though.
Some days aren't as bad as others.
I gave you an example of a really bad day just so you can see where our minds might wander from time to time.
Some days when we spike we just might be in a crappy mood!
In which case we just act like moody teenagers lol!
Just understand that we do, for the most part, have a constant level of pain that we experience.
We are buzzed all day everyday ;)
Thursday, August 6, 2015
Monday, July 27, 2015
Hope Grows Here
I really didn't know what to expect when it came to the conference.
Sure I had been reading every single email that I got from the foundation, I had looked at the schedule so many times that I knew what was on it, and I was super excited to meet new people.
When the opening session began, I was blown away by every single person there.
Let me set the stage for you:
There were 1700 people there.
700 of those were children.
Every single person there has a story.
That's a lot of people!
That's a ton of stories.
I've shared mine on here and if you go back far enough you'll find it.
But just imagine a room...no...a convention center full of stories just like mine.
It's just crazy.
See when we go through our every day life we tend to be the special ones.
We stick out because we are different (well, to those that know about our arthritis at least).
I like to think of ourselves as unicorns.
But this was like a convention just for unicorns.
How cool is that?!
I love camp because it shows us that we aren't alone and we can share our stories with campers.
This national conference amplifies that feeling by thousands.
You get to talk to people who have been on the same meds as you, who have experienced the exact feelings that you have about nearly everything, you share the same concerns, fears, and guilt.
While we all have this one big huge think that's the same, we are also very different.
We all have different reactions to medications, we have different forms of arthritis, and we are all involved in different levels of the arthritis foundation.
I LOVE this though because we can compare notes on what crazy thing our doctor wants us to try or we can make fun of the fact that our family puts us in bubbles so we don't break but the truth is we are already so messed up!
I really enjoyed learning from the breakout sessions as well. I learned so many cool stats, how I can get more involved, how genetics plays a part, and much more.
If you stay with me, for the next few posts I'll be talking about a lot of cool things that I learned in those sessions.
The theme for camp was "Hope Grows Here". You'll see in the picture below how those who attended put what they hoped for on ribbons. It was amazing some of the things the kids hoped for.
I'm so thankful that I got the chance to meet other young adults, kids, and even parents who traveled from around the country to come.
One of the young adult leaders (shout out Dr. JHo) rode a tandem bike from New York to Orlando in 3 weeks. She has arthritis too by the way,
I could never imagine doing something like that.
I mean I'm sitting here on my couch wishing that places delivered ice cream because I'm too lazy to go get some.
But that's just one example.
There was a lady there who I'll talk about later who was diagnosed at a young age and she's now blind and both of her daughters have been diagnosed. Her husband came in and we had a relationship session where it got pretty serious.
Then we had a cool up and coming actress/Broadway star who not only sang for us, but came to nearly every young adult session and shared her thoughts and stories.
There was a pediatric rheumatologist and even a NASCAR driver who both came in and shared their stories as well.
It's seeing how this disease affects everyone and how we really come together as one to help find ways to bring awareness to it that's truly inspiring.
There were so many people that wanted to come this year but couldn't make it. Because of that, the foundation decided that there will be 2 conferences next year so more people can come.
That's awesome!
Our goal, well at least the young adults group, is to shed light on the fact that young adults want to get involved. We want information, we want to help, and we want more chances to meet others like ourselves.
That's slowly happening thanks to those in leadership at the foundation and the 2 Jenns who helped run the young adults program.
It all starts with someone making noise, sooner or later, someone will hear you.
So if you didn't see my social media sites, here are 2 little trivia facts that are teasers for the next few posts to come.
There are 5 states in the US that do not have pediatric rheumatologists.
How do kids in those states get help? Well if they don't travel to another state, they don't get the help they need. To me, that's uncalled for.
24 states don't consider Arthritis a chronic condition.
So tell me 24 states, what do you consider it?
This needs to change and by advocating together, we're one step closer to changing it.
Thursday, July 16, 2015
It's not me, it's them.
I just got news that my rheumatologist will be leaving me soon. Now to those of you who don't see a doctor as regularly as I do, you may find this information boring.
But for me, this is a pretty big deal.
I'm kind of upset about this.
It's like I've been broken up with....
Yes that's a tad bit dramatic, but hear me out.
You meet this new doctor who will then become your person.
You tell them your problems, they listen to you, and then they do everything in their power to help you out.
Granted, you have to pay each time you see them....but that's beside the point.
It's the whole getting to know them, you telling them about your medical history, everything you are allergic to (which for me is a lot), and then figuring out the level of trust that you can build that doctor/patient relationship with.
See with this last doctor, she was pretty new to the field which made things super easy because she trusted me when it came to my health. It's really hard to find a doctor like that.
For those of us who have health problems, you would think it would be easy going through the motions and explaining your story to a new person each time you change doctors or meet someone new on the street.
But it's not.
It's tiring and repetitive.
Don't get me wrong, I love talking about my arthritis and will gladly do so for anyone, anytime.
But when you're sitting there filling out the paperwork for the umpteenth time, then You get to go explain it to the person....it's just....it's hard to explain.
Why can't you just have the same doctor.
It was foolish of me to think that I had finally found someone almost in the same ballpark as my pediatric rheumatologist.
He is amazing!
You're probably thinking wow, she's getting really into it over a doctor...
But when you've had as many rheumatologists as Hogwarts has had defense against the dark arts teachers, it becomes a problem.
Side note: Becky Schaick gets credit for the Hogwarts joke
I've had 4 rheumatologists since leaving my pediatric rheumatologist 6 years ago. Now one of those was due to insurance changing and one of those was due to the doctor being a complete witch, but the last 2 have been because the doctor decided to leave.
While whining about having to find a new doctor might seem juvenile, it's more about whining over the fact that I have to go through the process of trusting someone, getting them to realize my health history, and then building that relationship again.
Oh my gosh it's just like a boyfriend. No wonder I'm single ;)
So I'm going to go drown myself in ice cream and remember the times my doctor came to see me in the hospital.
I'm totally kidding, I'm not thaaaattt upset.
Just be thankful, if you're healthy, that you only have to see one doctor...maybe once a year. You have a higher doctor succes rate than anyone that has a chronic illness will ever have.
Be proud of that :)
Stayed tuned! The Juvenile arthritis conference is next week and I will for sure fill you in!
Sunday, June 28, 2015
A dream is a wish
It's been a week since kid's arthritis camp and I have to say that this was one of the best years ever.
Not only was it Disney themed which totally rocked, but the kids were awesome!
I mean, they are awesome every year, but there was just something special about this year.
Like every year at camp we have a DJ come and the naval base sends over some military guys and gals to spend the night dancing and having fun with the kids.
We normally last like 45 minutes...maybe. This year, we had like a 2 hour dance.
All the kids participated, as did all of the counselors!
I really don't know how any of us were able to walk the next day lol!
But the really cool thing about that night was that we had a few people come and help the girls get ready. Just like the bibbity boppity boutique....minus having to pay 100 and something dollars for the "disney experience" :)
I can't tell you how excited the girls were to get all dressed up like real princesses!
There were some in pirate gear too!
3 days full of magic happened and I wasn't even at Disney.
Yes I love camp because it allows the kids to hangout and talk to others like them. It's great that they get the chance to realize that they aren't alone. But I love camp even more because it allows them the chance to be normal.
Here they aren't worried what others are going to think because they are thinking the same thing.
Camp give them the chance to not have to explain themselves for once in their lives. I had (still have actually) a red mustache rash from one of my meds or part of my psoriasis and nobody asked why. It was great because if I was anywhere else and when I got home and went places, people stared like I had a contagious disease. At camp, everything is normal!
Oh they have to go take pills now....
Instead of having to tell their friends why, their friends are taking the same thing!
Their doctor also comes out 2 of the 3 days of camp, just to hangout. He does crafts with them, talks to them, and even dances with them!
How many people can say that they danced the cha cha slide with their doctor?
It truly is a hands on experience.
I started this blog because I wanted to give people an inside look at what it's like growing up with a chronic illness. I also wanted to bring awareness to Arthritis.
I want people to see how much of a positive influence kids camp is.
I want more camps.
I want more people to know about how kids are affected.
I want to find more ways in which we can help them beat this.
This is my dream.
This is my wish.
Now to just make that reality!
Here is an awesome pic of myself, Counselor Tricia, and Counselor Austin rocking our awesome Peter Pan pose!
By the way, this picture was taken by Cat Outzen. She's the awesome person who runs camp every year. There needs to be more people like her out there in the world! Go like Sacred Heart Children's Hospital's page on facebook to see more pics and learn more about this awesome camp and other camps like it!
Tuesday, June 9, 2015
On Pause
I was thinking the other day about how right now my life is in between events.
It's like I'm on commercial break between two really adventurous and addicting shows.
It's the summer. The first true summer I've had in 2 years and the last one I'll have for who knows how long.
You would think that I'm enjoying it! Don't get me wrong, I am! I love not having responsibilities or homework or professors to impress.
But it's so hard going from 60 to 0. For the past 2 years I've had something to do all the time and now I really don't have anything.
It's been a little over a month since I've graduated and I've already read 5 books and watched 3 tv shows.
I love this time because I can relax.
But I also am not a fan of my commercial break because of 2 reasons:
The first is that I can't really do anything because of my health.
Remember that hospital stay a few months ago?! Yeah, well, that's made it to where I can't get on planes or go to Disney (that's a really big deal for me) or really even be anywhere close to someone who is really sick.
The second and probably the most difficult is that I'm growing up. This commercial break is going to end soon and I'm going to wake up and it'll hit me that I'm in a doc program. Right now it's still just words. Right now that's months in the future when in reality it's 2.5 months away. I do not like the idea of growing up lol! I think it's why I like Peter Pan so much. Growing up means more problems. The other downside to growing up is coming to terms with the fact that all of your friends leave you. Now, I've had friends move before. I have 2 in Texas, one in Hawaii, and a few in Georgia. Now the friends that I've spent the last 2 years with (that's another big deal because I'm not talking like oh you see them every now and then during those 2 years...no this is everyday all day even on the weekends for 2 years) are moving to different places.
I'm complaining right now and I'm not sorry for it lol!
What does this have to do with having Arthritis? I promise I have a point, it's not all whining lol!
Growing up is inevitable and my commercial break will end in 2.5 months. I can't stop that. I can't control that.
The future is something that everyone worries about.
Now imagine having a disability.
The uncertainty of how my body will handle the stress of a program as demanding as the one I'm entering is stressful. The thought of not having my best friends close when I need someone to crawl in bed and watch greys anatomy with me because I can't move, is scary. I could go on, but I won't.
I like my commercial break so much because it's like hitting the pause button on life for just a little bit.
Once this is over, my next adventure will begin. I'll handle it and succeed just like I do with everything else! It's normal for us to worry about what the future holds. It's exciting and scary. But that doesn't mean we won't miss how things were.
Ask me in 2.5 months if I'm ready for that adventure to start, hopefully it'll be a different answer than I have right now.
Or I might have run off to be a dolphin trainer....you never know what the future holds!!
I'll try to write more this summer and not leave you hanging for 2 months. Arthritis kids camp is coming up, so stay tuned for stories from Disney Camp!!!
It's like I'm on commercial break between two really adventurous and addicting shows.
It's the summer. The first true summer I've had in 2 years and the last one I'll have for who knows how long.
You would think that I'm enjoying it! Don't get me wrong, I am! I love not having responsibilities or homework or professors to impress.
But it's so hard going from 60 to 0. For the past 2 years I've had something to do all the time and now I really don't have anything.
It's been a little over a month since I've graduated and I've already read 5 books and watched 3 tv shows.
I love this time because I can relax.
But I also am not a fan of my commercial break because of 2 reasons:
The first is that I can't really do anything because of my health.
Remember that hospital stay a few months ago?! Yeah, well, that's made it to where I can't get on planes or go to Disney (that's a really big deal for me) or really even be anywhere close to someone who is really sick.
The second and probably the most difficult is that I'm growing up. This commercial break is going to end soon and I'm going to wake up and it'll hit me that I'm in a doc program. Right now it's still just words. Right now that's months in the future when in reality it's 2.5 months away. I do not like the idea of growing up lol! I think it's why I like Peter Pan so much. Growing up means more problems. The other downside to growing up is coming to terms with the fact that all of your friends leave you. Now, I've had friends move before. I have 2 in Texas, one in Hawaii, and a few in Georgia. Now the friends that I've spent the last 2 years with (that's another big deal because I'm not talking like oh you see them every now and then during those 2 years...no this is everyday all day even on the weekends for 2 years) are moving to different places.
I'm complaining right now and I'm not sorry for it lol!
What does this have to do with having Arthritis? I promise I have a point, it's not all whining lol!
Growing up is inevitable and my commercial break will end in 2.5 months. I can't stop that. I can't control that.
The future is something that everyone worries about.
Now imagine having a disability.
The uncertainty of how my body will handle the stress of a program as demanding as the one I'm entering is stressful. The thought of not having my best friends close when I need someone to crawl in bed and watch greys anatomy with me because I can't move, is scary. I could go on, but I won't.
I like my commercial break so much because it's like hitting the pause button on life for just a little bit.
Once this is over, my next adventure will begin. I'll handle it and succeed just like I do with everything else! It's normal for us to worry about what the future holds. It's exciting and scary. But that doesn't mean we won't miss how things were.
Ask me in 2.5 months if I'm ready for that adventure to start, hopefully it'll be a different answer than I have right now.
Or I might have run off to be a dolphin trainer....you never know what the future holds!!
I'll try to write more this summer and not leave you hanging for 2 months. Arthritis kids camp is coming up, so stay tuned for stories from Disney Camp!!!
Monday, April 6, 2015
Just like the good ol' days!
I survived my first full day back!
You have no idea how excited I am that this happened.
I totally thought I wasn't going to do as well as I did, but hey, sometimes you even surprise yourself.
Before I get into my story of the last week, you my dear readers get the benefit of a true first hand experience.
Now yes, all of my experiences are something that I have gone through...but they happened years ago and I'm relying on memories of hospital stays and medication troubles.
It's not really normal (since when have I ever been normal) for someone in their early 20s to have a hospital stay...or flare...or whatever you wanna call it...it just doesn't happen.
It happens when you're a kid...
Or when you're older...
Not when you're 23 and in the final stretch of your last semester of graduate school.
But it did to me.
I was due for a good flare.
The time was coming for me to get sick, not hospital sick, but to the point where my body would force me to remain in bed for a whole weekend or for a few days.
I had pushed myself to the limit for nearly 2 years, more so in this last year, but that's beside the point and I had yet to have a major flare.
It was time, I just had hoped that I could push it off for another few weeks that way I could get sick over summer break and not have to miss any school or stress over any assignments.
Well, you never really get what you want lol!
Let me say this once...
I haven't been this sick since High School.
Go back and read some of my first few posts and you'll understand what I mean by this.
Now it was a different kind of sick. In high school I had a rash, my blood was all crazy, and I couldn't move at all.
This time, I had a full body rash (yes it itched like crazy..still kinda does), my blood was all crazy, and I was in tremendous pain the first night.
So it was different, but my body was just as weak.
It all started with that dang cortisone shot in my knee that became superficially infected.
The 2 Rocephin shots plus 2 other antibiotics started my downfall.
I got a rash last thursday and I thought it was due to the stress from Comps, which if you knew how big of a deal comps is, then you wouldn't be surprised.
Well after comps I went home for what I thought was a normal weekend but nope...my body had other ideas.
Friday night, technically Saturday morning around 2am I couldn't sleep because I was in so much pain.
Like crying. Me. Real tears.
I'm also pretty sure I had a fever, but that part didn't come into play until the next night.
So Saturday I spent most of the day laying around my cousins birthday party holding the most precious little girl and just kind of being there because I didn't have the energy to do anything else.
It was Sunday when I woke up with a fever that didn't register on the thermometer and a fully body rash....like I was more red than white....that my mom decided we should take a trip to the ER.
4 nights, 5 days, countless amounts of blood draws, a ride in an ambulance because they transferred me to a different hospital (they didn't know what to do with me), and 6+ doctors later I'm finally released from the hospital with a vague idea of what put me in there to begin with.
I've never been normal....we all know that by now.
But here's the breakdown:
The 2 rocephin shots lowered my platelets to 44 (normal is 150-500). Low platlets mean bleeding to death, no immune system at all, and my personal favorite....no strength or energy.
One of the antibiotics caused the rash which is interesting because I had been on it before and I wasn't allergic but because my counts were so low...BOOM it happened.
My liver counts went up among other things...this part we are still unsure of. But I've just come to accept that this is going to be a normal thing from here on out and there's nothing anybody can really do to change that.
Oh and another thing that contributes to the exhaustion/no energy/no strength thing is that my heart was beating so fast, it was in workout mode for three days straight because of my high fever that we couldn't get down. So my heart was working out for me while my body couldn't. It was just thinking of me and how it knew I wanted to be in shape.....
So I've been on so many steroids that I'll be breaking out my big girl pants soon! Yay! Also, I'm currently off of pretty much all my meds except the steriods and I'm wearing long sleeves so I don't gross you regular people out with my bruises all over my arms (if you've seen them, you know they are nasty lol!)
I know that many of you have already been kept in the loop because of my family and friends.
Which, they are all so wonderful and I'm blessed to have them drive me around and make sure i'm ok. I couldn't be more thankful for that.
The hardest part about all of this and something that I think I've touched on before is that it's not the pain or the rash or the constant itching that gets to me. I'm used to all of that. That I can handle because I know how to handle it. There are pills for it, I know how to work my way around it...
It's the lack of energy. The lack of strength. The utter exhaustion from just doing one simple thing.
That's what gets me.
I don't like being weak.
I can guarantee you that if you ask anyone who has gone through this, they will have the exact same answer.
You can't take a magic pill and automatically have your strength back.
I was so tired that I didn't even want to watch TV. I didn't want to talk because I wanted to save my strength. I was a person who went 100 mph every single day to not being able to walk from the bedroom to the bathroom without having to stop because I got dizzy.
So yesterday when I went the full day without taking a nap, that was a success.
For the past week I had taken like 2 hour naps twice a day lol!
I NEVER take naps.
My body was just that exhausted and you know what...I HATE it.
To me, that's the worst feeling ever.
The feeling that you can't do things, not because you don't want to, but because you physically can't.
And this is different from being in pain. Being in pain gives you a reason to not do things, yes exhaustion is a reason... but weakness is not in my book.
But that was my reason this time. It's hard to accept that.
I was weak.
I still am weak.
But i'm getting stronger.
I don't have all the answers to why this happened, it just did.
My body forced me to slow down in a way that I literally had to stop everything I was doing in order to get better.
I don't like being weak, I hate the idea of it honestly. I respect and look up to people who go through this on a regular basis.
I'm just glad I made it through today with no naps, no passing out, and only a limited amount of Zombie Kara showed!
I guess sometimes your body forces you into things that you don't like so you can be more thankful for things that you do go through.
My body needed the rest.
I needed the reminder that in order to be strong, you must first know what it's like to be weak.
Side note:
Thank you for all the prayers, thoughts, questions, help, and just everything in general. Ya'll are awesome and continue to amaze me with all the support you give me and my family :)
You have no idea how excited I am that this happened.
I totally thought I wasn't going to do as well as I did, but hey, sometimes you even surprise yourself.
Before I get into my story of the last week, you my dear readers get the benefit of a true first hand experience.
Now yes, all of my experiences are something that I have gone through...but they happened years ago and I'm relying on memories of hospital stays and medication troubles.
It's not really normal (since when have I ever been normal) for someone in their early 20s to have a hospital stay...or flare...or whatever you wanna call it...it just doesn't happen.
It happens when you're a kid...
Or when you're older...
Not when you're 23 and in the final stretch of your last semester of graduate school.
But it did to me.
I was due for a good flare.
The time was coming for me to get sick, not hospital sick, but to the point where my body would force me to remain in bed for a whole weekend or for a few days.
I had pushed myself to the limit for nearly 2 years, more so in this last year, but that's beside the point and I had yet to have a major flare.
It was time, I just had hoped that I could push it off for another few weeks that way I could get sick over summer break and not have to miss any school or stress over any assignments.
Well, you never really get what you want lol!
Let me say this once...
I haven't been this sick since High School.
Go back and read some of my first few posts and you'll understand what I mean by this.
Now it was a different kind of sick. In high school I had a rash, my blood was all crazy, and I couldn't move at all.
This time, I had a full body rash (yes it itched like crazy..still kinda does), my blood was all crazy, and I was in tremendous pain the first night.
So it was different, but my body was just as weak.
It all started with that dang cortisone shot in my knee that became superficially infected.
The 2 Rocephin shots plus 2 other antibiotics started my downfall.
I got a rash last thursday and I thought it was due to the stress from Comps, which if you knew how big of a deal comps is, then you wouldn't be surprised.
Well after comps I went home for what I thought was a normal weekend but nope...my body had other ideas.
Friday night, technically Saturday morning around 2am I couldn't sleep because I was in so much pain.
Like crying. Me. Real tears.
I'm also pretty sure I had a fever, but that part didn't come into play until the next night.
So Saturday I spent most of the day laying around my cousins birthday party holding the most precious little girl and just kind of being there because I didn't have the energy to do anything else.
It was Sunday when I woke up with a fever that didn't register on the thermometer and a fully body rash....like I was more red than white....that my mom decided we should take a trip to the ER.
4 nights, 5 days, countless amounts of blood draws, a ride in an ambulance because they transferred me to a different hospital (they didn't know what to do with me), and 6+ doctors later I'm finally released from the hospital with a vague idea of what put me in there to begin with.
I've never been normal....we all know that by now.
But here's the breakdown:
The 2 rocephin shots lowered my platelets to 44 (normal is 150-500). Low platlets mean bleeding to death, no immune system at all, and my personal favorite....no strength or energy.
One of the antibiotics caused the rash which is interesting because I had been on it before and I wasn't allergic but because my counts were so low...BOOM it happened.
My liver counts went up among other things...this part we are still unsure of. But I've just come to accept that this is going to be a normal thing from here on out and there's nothing anybody can really do to change that.
Oh and another thing that contributes to the exhaustion/no energy/no strength thing is that my heart was beating so fast, it was in workout mode for three days straight because of my high fever that we couldn't get down. So my heart was working out for me while my body couldn't. It was just thinking of me and how it knew I wanted to be in shape.....
So I've been on so many steroids that I'll be breaking out my big girl pants soon! Yay! Also, I'm currently off of pretty much all my meds except the steriods and I'm wearing long sleeves so I don't gross you regular people out with my bruises all over my arms (if you've seen them, you know they are nasty lol!)
I know that many of you have already been kept in the loop because of my family and friends.
Which, they are all so wonderful and I'm blessed to have them drive me around and make sure i'm ok. I couldn't be more thankful for that.
The hardest part about all of this and something that I think I've touched on before is that it's not the pain or the rash or the constant itching that gets to me. I'm used to all of that. That I can handle because I know how to handle it. There are pills for it, I know how to work my way around it...
It's the lack of energy. The lack of strength. The utter exhaustion from just doing one simple thing.
That's what gets me.
I don't like being weak.
I can guarantee you that if you ask anyone who has gone through this, they will have the exact same answer.
You can't take a magic pill and automatically have your strength back.
I was so tired that I didn't even want to watch TV. I didn't want to talk because I wanted to save my strength. I was a person who went 100 mph every single day to not being able to walk from the bedroom to the bathroom without having to stop because I got dizzy.
So yesterday when I went the full day without taking a nap, that was a success.
For the past week I had taken like 2 hour naps twice a day lol!
I NEVER take naps.
My body was just that exhausted and you know what...I HATE it.
To me, that's the worst feeling ever.
The feeling that you can't do things, not because you don't want to, but because you physically can't.
And this is different from being in pain. Being in pain gives you a reason to not do things, yes exhaustion is a reason... but weakness is not in my book.
But that was my reason this time. It's hard to accept that.
I was weak.
I still am weak.
But i'm getting stronger.
I don't have all the answers to why this happened, it just did.
My body forced me to slow down in a way that I literally had to stop everything I was doing in order to get better.
I don't like being weak, I hate the idea of it honestly. I respect and look up to people who go through this on a regular basis.
I'm just glad I made it through today with no naps, no passing out, and only a limited amount of Zombie Kara showed!
I guess sometimes your body forces you into things that you don't like so you can be more thankful for things that you do go through.
My body needed the rest.
I needed the reminder that in order to be strong, you must first know what it's like to be weak.
Side note:
Thank you for all the prayers, thoughts, questions, help, and just everything in general. Ya'll are awesome and continue to amaze me with all the support you give me and my family :)
Sunday, April 5, 2015
Top 10 List: Miscellaneous
10. Ten activities to get rid of anxiety
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This is a neat little list of things that you can do to practice lowering your anxiety. It goes back to some of the basic coping skills that you can use from yoga and exercise to positive affirmations.
9. 16 Gentle Exercises for People with Arthritis
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This can be used for any type of disability when done the right way. It doesn’t have to be just for arthritis. It’s a pretty cool list of low key, not hard on your joint exercises that I found could be useful for those wanting to become active or wanting to find a new way to cope and release stress.
8. Theory of Everything
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Based on the life of Stephen Hawking, this movie shows his struggles overcoming the obstacles that ALS placed on him. He beat the odds with the help of his friends and family and the fact that he never gave up. Such an inspirational movie that features someone with a disability and shows how he was able to live with it.
7. 30+ lessons life with Chronic Illness can teach you
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Written by a lady who has lived with a Chronic Illness for a very long time, this list includes first hand advice/opinions/thoughts on what it’s like to live with a disability. It’s always nice hearing what someone who actually deals with it on a daily basis has to say.
6. Tips of Traveling with a Chronic Illness
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So you may be thinking why this is on a list for mental health and chronic illnesses. Well, it’s because this is information that we don’t normally think of. We tend to overlook the simple things in life, like packing or vacationing or even walking. So, why not put it on the list?!
5. Coping Skills Toolbox
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This is a pretty awesome thing to have handy! It’s simple and something that you can make all your own. It’s a toolbox for things you can pull out when you need it to calm you down and bring you back to your safe place. Check it out!
4. How Stress Affects the Body
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I have this on here because I feel like a lot of us really don’t fully understand the impact that stress has on our bodies. This breaks it down and explains what we all need to know.
3. What you need to know
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This is a basic definition list of some of the major autoimmune disorders. It’s helpful to have on hand, just like the last number about the effects of stress on the body. It’s just some resources to keep on file in case you find yourself wondering more about them.
1. 2. Things you may not know about autoimmune disease
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I really like this page! It’s honest, it has facts, it’s written by someone who knows what it’s like to live with an autoimmune disease. Basically, it’s very relatable!
1. 1. Cake
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This is a movie about a lady experiencing chronic pain after a car accident. She then befriends the husband of a lady in her chronic pain group that committed suicide and together they work their way through the healing process. It’s a great combination of what it’s like to experience depression and chronic illness. It’s a wonderful film that I recommend seeing!
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