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.
Wednesday, June 1, 2016
Saturday, May 14, 2016
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.
Monday, April 25, 2016
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 :)
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 :)
Tuesday, March 29, 2016
I remember
One year ago today I was being admitted into the hospital for what will be remembered as one of the scariest hospital experiences I've had. That's saying a lot considering the fact that I've been in and out of the hospital more times than the average 24 year old!
If you want to read about it and haven't yet, here it is! I suggest reading it because it's a really good post (not to brag or anything lol!) and it'll give you an understanding about it all.
http://ribbonsbowsandhospitalbracelets.blogspot.com/2015/04/just-like-good-ol-days.html
It's funny because my doctors still talk about it.
Last time I was there over christmas break, one reminded me, "hey, you were one really sick person"....thanks for reminding me!
I'd be lying if I said I don't still worry about those things.
Every time I see a rash pop up, I immediately check it every time I change clothes.
If I get sick, I am thinking of every possible outcome that could happen.
It's how I think.
When you have so many experiences that end the same way, you can't help it.
I always joke with others about my luck and they laugh it off and shake their heads, but come on...look at my track record.
It gets overwhelming sometimes. Like there's this fear that it will happen again and I won't bounce back like I have before.
I'm not scared of getting sick, I'm not scared of the hospital, and I'm not even scared of dying.
I'm scared of being that weak again.
Read my post above and you'll understand.
I've talked to one of my friends about this before. I know I'm not alone in feeling this.
But it happens. You have a mini freakout because the possibility of that happening is very very real.
So I remember.
And it's not something that I have to try hard to do. It's actually pretty weird...
I remember each room that I've ever been in at the hospital. I can tell you which way my bed faced, where the window was at, where my room was in the hallway, and if it was close to the nurses station. I can even tell you stories about certain times I was there.
For example:
I remember being at Vandy getting lab work done and I was promised O'Charleys if I was good. On the way out, we saw this little kid being pulled around in a little red wagon with an IV pole. I can remember thinking, man, that's cool that he gets to ride in a wagon inside!
There are a few others too!
The most important thing about me remembering is that I get better.
Each time I go in the hospital, I come out.
I think that calms my mind a little bit.
I still can't help but get worried that I'll be that weak again.
But knowing how far I've come in the last year reminds me that I am strong.
I mean, I went from getting the max amount of steroids that someone can take in a day to being completely off of them in less than a year.
That's insane!
I'm also finishing my second semester of the doc program here at FSU.
While I have many, many more to go....it's nice to be able to look back on the things that I've done despite everything.
Here's to making it 1 year without another hospital experience ;)
Let's try to make it one more lol!
Side note: I debated for a good 10 minutes about putting up one of the hospital pictures but figured it might freak you out since I was more red than white...so if you wanna see a cool picture, hit me up! lol! It's pretty weird looking!
If you want to read about it and haven't yet, here it is! I suggest reading it because it's a really good post (not to brag or anything lol!) and it'll give you an understanding about it all.
http://ribbonsbowsandhospitalbracelets.blogspot.com/2015/04/just-like-good-ol-days.html
It's funny because my doctors still talk about it.
Last time I was there over christmas break, one reminded me, "hey, you were one really sick person"....thanks for reminding me!
I'd be lying if I said I don't still worry about those things.
Every time I see a rash pop up, I immediately check it every time I change clothes.
If I get sick, I am thinking of every possible outcome that could happen.
It's how I think.
When you have so many experiences that end the same way, you can't help it.
I always joke with others about my luck and they laugh it off and shake their heads, but come on...look at my track record.
It gets overwhelming sometimes. Like there's this fear that it will happen again and I won't bounce back like I have before.
I'm not scared of getting sick, I'm not scared of the hospital, and I'm not even scared of dying.
I'm scared of being that weak again.
Read my post above and you'll understand.
I've talked to one of my friends about this before. I know I'm not alone in feeling this.
But it happens. You have a mini freakout because the possibility of that happening is very very real.
So I remember.
And it's not something that I have to try hard to do. It's actually pretty weird...
I remember each room that I've ever been in at the hospital. I can tell you which way my bed faced, where the window was at, where my room was in the hallway, and if it was close to the nurses station. I can even tell you stories about certain times I was there.
For example:
I remember being at Vandy getting lab work done and I was promised O'Charleys if I was good. On the way out, we saw this little kid being pulled around in a little red wagon with an IV pole. I can remember thinking, man, that's cool that he gets to ride in a wagon inside!
There are a few others too!
The most important thing about me remembering is that I get better.
Each time I go in the hospital, I come out.
I think that calms my mind a little bit.
I still can't help but get worried that I'll be that weak again.
But knowing how far I've come in the last year reminds me that I am strong.
I mean, I went from getting the max amount of steroids that someone can take in a day to being completely off of them in less than a year.
That's insane!
I'm also finishing my second semester of the doc program here at FSU.
While I have many, many more to go....it's nice to be able to look back on the things that I've done despite everything.
Here's to making it 1 year without another hospital experience ;)
Let's try to make it one more lol!
Side note: I debated for a good 10 minutes about putting up one of the hospital pictures but figured it might freak you out since I was more red than white...so if you wanna see a cool picture, hit me up! lol! It's pretty weird looking!
Wednesday, March 16, 2016
Spring Cleaning
I've only really posted about this topic one other time because it's not something I normally dwell on. But in light of today's events and the greatness that is the post-steroids kara, I thought I would share my current thoughts on the issue.
Here is my other post and most of it hold's true:
http://ribbonsbowsandhospitalbracelets.blogspot.com/2014/01/the-perfect-fit.html
However, when I went back to read it I laughed at how happy and optimistic I sounded.
Don't get me wrong, I'm still those things, just a little bit more realistic.
I came home from class today and for some absurd reason I thought I would try on clothes in my closet. I wanted to go through and see what dresses would be good for practicum and since it's getting warmer It would be nice to have some on hand.
BAD IDEA.
This was one of those times where I wish I had a roommate to come in and slap me across the head.
Needless to say, thirty minutes later my closet was half empty in a bag on my floor and I was doing a blogilates workout. All while my inner monologue was telling me how fat I looked and how much weight I've gained since I got this dress and those pants and that skirt.
Now let's pause and rewind back to spring break.
All I wanted to do was to go fish. Did I get to do that? No. Why? Because four of my days were spent at the doctors office getting allergy tested and told that I was doing great off of my steroids. And when I wasn't at the doctor's office I was laying in bed because the stress from school had caught up to me and made me so exhausted I didn't even want to move.
In 3 days, It'll be 2 months that I've been off of the steroids.
The doctors say "Oh, you must be feeling so great!", "oh you're only flaring a little bit", and "oh you're going to be so happy now".
Nope. I feel like crap. It takes me an hour each morning just to get my body ready to get ready for the day. And happy is one of the 102 moods I feel during the day and it certainly isn't the frontrunner.
Yes, overall steroids are bad for you.
But as you can see in my other posts, it's hell getting and remaining off of them.
Back to the story...
So now, I'm laying on my heating pad writing this because it'll take me a little over an hour to get moving in the morning (no I'm not exaggerating) because I felt so self-conscious about my body that I felt the need to put myself in more pain in order to attempt to feel better about myself.
Does that make sense to you? Because to me it makes sense, but it shouldn't have to.
You get where I'm going here?
I shouldn't have to feel bad about my body or the way I look or the fact that I haven't lost any weight since getting off the meds like I thought I would.
I shouldn't have to, but I do.
And I know part of that is due to my newfound thoughts since being off the medication.
Being in more pain means feeling more emotions.
I get that.
But what about the girls who don't have the excuse of having a chronic illness?
What about the girls who are on medication and still feel like crap because they can't fit into the outfits displayed at the mall?
Society does a great job about telling us we need to have better self-esteem and feel better about our bodies, yet they expect us to look like Victoria secret models.
And now, the hot new topic is prescribing less pain medication and focusing on becoming more active, losing weight, and trying to eat healthier.
I'm slowly starting to walk a little bit each day because I know I need to start off exercising slow. I get that. I know it will help. I also try to eat healthier.
But what if that doesn't work?
Then what?
What if that's not the reason I'm in pain all the time?
It's a constant battle with trying to feel good in your own skin and taking care of your body, but how can you do that when you don't even feel good deep down in your bones?
I know that every girl has thoughts like this at least once in their life, so I don't feel so different writing about it.
But as one of my best friends told me tonight, it's time to empower each other into not feeling so pressure by others or society. So I challenge you to do that the next time you feel crappy cause your shirt's a little tight or the next time your friend says she looks fat. Tell her she's beautiful inside and out and it's not about how you look, it's about how you feel in your own skin.
Then, maybe we can begin to change a few things in this world by starting with ourselves.
Here is my other post and most of it hold's true:
http://ribbonsbowsandhospitalbracelets.blogspot.com/2014/01/the-perfect-fit.html
However, when I went back to read it I laughed at how happy and optimistic I sounded.
Don't get me wrong, I'm still those things, just a little bit more realistic.
I came home from class today and for some absurd reason I thought I would try on clothes in my closet. I wanted to go through and see what dresses would be good for practicum and since it's getting warmer It would be nice to have some on hand.
BAD IDEA.
This was one of those times where I wish I had a roommate to come in and slap me across the head.
Needless to say, thirty minutes later my closet was half empty in a bag on my floor and I was doing a blogilates workout. All while my inner monologue was telling me how fat I looked and how much weight I've gained since I got this dress and those pants and that skirt.
Now let's pause and rewind back to spring break.
All I wanted to do was to go fish. Did I get to do that? No. Why? Because four of my days were spent at the doctors office getting allergy tested and told that I was doing great off of my steroids. And when I wasn't at the doctor's office I was laying in bed because the stress from school had caught up to me and made me so exhausted I didn't even want to move.
In 3 days, It'll be 2 months that I've been off of the steroids.
The doctors say "Oh, you must be feeling so great!", "oh you're only flaring a little bit", and "oh you're going to be so happy now".
Nope. I feel like crap. It takes me an hour each morning just to get my body ready to get ready for the day. And happy is one of the 102 moods I feel during the day and it certainly isn't the frontrunner.
Yes, overall steroids are bad for you.
But as you can see in my other posts, it's hell getting and remaining off of them.
Back to the story...
So now, I'm laying on my heating pad writing this because it'll take me a little over an hour to get moving in the morning (no I'm not exaggerating) because I felt so self-conscious about my body that I felt the need to put myself in more pain in order to attempt to feel better about myself.
Does that make sense to you? Because to me it makes sense, but it shouldn't have to.
You get where I'm going here?
I shouldn't have to feel bad about my body or the way I look or the fact that I haven't lost any weight since getting off the meds like I thought I would.
I shouldn't have to, but I do.
And I know part of that is due to my newfound thoughts since being off the medication.
Being in more pain means feeling more emotions.
I get that.
But what about the girls who don't have the excuse of having a chronic illness?
What about the girls who are on medication and still feel like crap because they can't fit into the outfits displayed at the mall?
Society does a great job about telling us we need to have better self-esteem and feel better about our bodies, yet they expect us to look like Victoria secret models.
And now, the hot new topic is prescribing less pain medication and focusing on becoming more active, losing weight, and trying to eat healthier.
I'm slowly starting to walk a little bit each day because I know I need to start off exercising slow. I get that. I know it will help. I also try to eat healthier.
But what if that doesn't work?
Then what?
What if that's not the reason I'm in pain all the time?
It's a constant battle with trying to feel good in your own skin and taking care of your body, but how can you do that when you don't even feel good deep down in your bones?
I know that every girl has thoughts like this at least once in their life, so I don't feel so different writing about it.
But as one of my best friends told me tonight, it's time to empower each other into not feeling so pressure by others or society. So I challenge you to do that the next time you feel crappy cause your shirt's a little tight or the next time your friend says she looks fat. Tell her she's beautiful inside and out and it's not about how you look, it's about how you feel in your own skin.
Then, maybe we can begin to change a few things in this world by starting with ourselves.
Wednesday, February 17, 2016
Liar Liar Pants on Fire
So I've finally made it to the pain phase in this withdrawal. My sugar is only spiking once a day and my rashes come and go. This is the part I know how to handle. This is the part that I can handle.
I think.
Normally, when my pain gets bad I'll just up my prednisone, take a muscle relaxer, or when I was younger I would get put in the hosptial.
But that was then...and...this is the first time that I'm actually having to deal with the pain without any help.
Yes, I could easily take my prednisone again, but I don't think I could take it and go through all of this again. Meaning that if I ever go back on it, I'm not coming off.
I could take a muscle relaxer except I don't have any and won't see the doctor until spring break.
And we all know that if I was to go to the hospital they would just shake their heads at me because honestly there's nothing that they can do to help and they are going to think I'm an addict wanting pills.
That's the thing I hate....how hospitals these days just think everyone wants meds. Ahh, I digress. That post is for another time.
So I'm having to deal with my pain...alone.
Needless to say I've cried and broken down more in the last few weeks than I have in the last year.
I swear if it wasn't for the stress of school and having to function like a normal person each day, it would be fine.
But it's not.
And because of that, I have to lie.
Now if you read my blog and see me most of the time, then it's not super hard to see through the act I put up. And if you know me well enough, it's easy to call me out.
But! If you don't know, and most of you I've been able to fool, now's your chance to find out.
It's funny because just the other day I had a classmate walk up to me and ask if I was ok because she could tell...but nobody else who had talked to me that day could. They were like, "I didn't know you didn't feel well" and I'm like, "that's totally ok, I was hiding it".
I don't like to go broadcasting that I feel like the tin man who got hit by a truck. I don't want others to feel bad for me, that's not my goal here. I want to be able to do what I need to do and it's just easier if I fake it till I make it lol!
Because of that, I lie. All the time.
Yeah, I'm doing fine!
Of course I'm ok!
No, I'm just tired.
And on and on and on.
It's what we do. We pretend everything is ok because for me:
1. I don't like the attention
2. I want to think that if I say I'm ok, I will be ok
and 3. I don't want others to think that If I'm sick, I won't be able to keep up with my responsibilities
So for me, it comes down to pushing through the pain and the not feeling great in order to show others that I'm capable of being normal.
Which everyone, including me, knows I'm not.
But I'm going to lie to you anyway.
In all reality, we all do it.
You do it when someone asks you how you are.
You respond with, "I'm good, and you?"
Because you know that if you say you aren't ok, then you have to explain yourself and it could get awkward and you don't know if the other person truly cares or if they are just asking because it's polite.
I also feel like if I truthfully answer the question it might make the other person feel weird. I don't know, it's just a thought in my head. Like ok, now I have to explain that I'm really ok with not feeling great because I'm totally used to it, which then makes me feel like they feel weird because I just blew through half my life story and they get confused and then it just becomes one big hot mess.
It's just easier for me to say that I'm ok.
Which lately I've been saying, "I'm here!" which is my way of saying I made it out of bed and got dressed today which means that's a W in my book.
If I had a tell, that would be it.
I said that to my professor the other day (the one who called me out for swaying in my seat) and she kind of scrunched her face and cocked her head in an I'm sorry way, then asked, "how long will you be feeling this way". Then I had to go into more details of how I wasn't sure, but I was really ok, and no I'm not suicidal, and yes I have help if I can't get dressed, and it was just one big mess.
So now I know that even though professors can tell that I don't feel well, to just lie to them anyway about it lol!
The funniest thing about this is....
I suck at lying.
I cannot keep a straight face to save my life.
When I was little or with my friends, they all knew when I wasn't telling the truth.
So I never lied because I knew I couldn't get away with it.
This is a little different.
Or maybe, everyone already knows and they don't want me to know that they know....
Or not. Who knows.
But because I lie all the time about how I'm really feeling, I figured I would let you in on some secrets.
These couldn't be more spot on.
http://themighty.com/2016/02/25-secrets-of-people-with-chronic-illnesses/
My favorites are: 3,6-10, 15, 22, and 25.
And remember that everything I'm saying here is how I feel and my opinions. While we might feel the same most of the time, not everyone truly thinks or feels the way I do about this disease.
In all seriousness, if you really do have a question or want to know something about the way I'm feeling, I'll do my best (pinky promise) to tell you the truth lol! ;)
But really, isn't that what this blog is for? Me unleashing all (almost) of my thoughts and feelings and opinions out into the world...well the internet world lol!
I think.
Normally, when my pain gets bad I'll just up my prednisone, take a muscle relaxer, or when I was younger I would get put in the hosptial.
But that was then...and...this is the first time that I'm actually having to deal with the pain without any help.
Yes, I could easily take my prednisone again, but I don't think I could take it and go through all of this again. Meaning that if I ever go back on it, I'm not coming off.
I could take a muscle relaxer except I don't have any and won't see the doctor until spring break.
And we all know that if I was to go to the hospital they would just shake their heads at me because honestly there's nothing that they can do to help and they are going to think I'm an addict wanting pills.
That's the thing I hate....how hospitals these days just think everyone wants meds. Ahh, I digress. That post is for another time.
So I'm having to deal with my pain...alone.
Needless to say I've cried and broken down more in the last few weeks than I have in the last year.
I swear if it wasn't for the stress of school and having to function like a normal person each day, it would be fine.
But it's not.
And because of that, I have to lie.
Now if you read my blog and see me most of the time, then it's not super hard to see through the act I put up. And if you know me well enough, it's easy to call me out.
But! If you don't know, and most of you I've been able to fool, now's your chance to find out.
It's funny because just the other day I had a classmate walk up to me and ask if I was ok because she could tell...but nobody else who had talked to me that day could. They were like, "I didn't know you didn't feel well" and I'm like, "that's totally ok, I was hiding it".
I don't like to go broadcasting that I feel like the tin man who got hit by a truck. I don't want others to feel bad for me, that's not my goal here. I want to be able to do what I need to do and it's just easier if I fake it till I make it lol!
Because of that, I lie. All the time.
Yeah, I'm doing fine!
Of course I'm ok!
No, I'm just tired.
And on and on and on.
It's what we do. We pretend everything is ok because for me:
1. I don't like the attention
2. I want to think that if I say I'm ok, I will be ok
and 3. I don't want others to think that If I'm sick, I won't be able to keep up with my responsibilities
So for me, it comes down to pushing through the pain and the not feeling great in order to show others that I'm capable of being normal.
Which everyone, including me, knows I'm not.
But I'm going to lie to you anyway.
In all reality, we all do it.
You do it when someone asks you how you are.
You respond with, "I'm good, and you?"
Because you know that if you say you aren't ok, then you have to explain yourself and it could get awkward and you don't know if the other person truly cares or if they are just asking because it's polite.
I also feel like if I truthfully answer the question it might make the other person feel weird. I don't know, it's just a thought in my head. Like ok, now I have to explain that I'm really ok with not feeling great because I'm totally used to it, which then makes me feel like they feel weird because I just blew through half my life story and they get confused and then it just becomes one big hot mess.
It's just easier for me to say that I'm ok.
Which lately I've been saying, "I'm here!" which is my way of saying I made it out of bed and got dressed today which means that's a W in my book.
If I had a tell, that would be it.
I said that to my professor the other day (the one who called me out for swaying in my seat) and she kind of scrunched her face and cocked her head in an I'm sorry way, then asked, "how long will you be feeling this way". Then I had to go into more details of how I wasn't sure, but I was really ok, and no I'm not suicidal, and yes I have help if I can't get dressed, and it was just one big mess.
So now I know that even though professors can tell that I don't feel well, to just lie to them anyway about it lol!
The funniest thing about this is....
I suck at lying.
I cannot keep a straight face to save my life.
When I was little or with my friends, they all knew when I wasn't telling the truth.
So I never lied because I knew I couldn't get away with it.
This is a little different.
Or maybe, everyone already knows and they don't want me to know that they know....
Or not. Who knows.
But because I lie all the time about how I'm really feeling, I figured I would let you in on some secrets.
These couldn't be more spot on.
http://themighty.com/2016/02/25-secrets-of-people-with-chronic-illnesses/
My favorites are: 3,6-10, 15, 22, and 25.
And remember that everything I'm saying here is how I feel and my opinions. While we might feel the same most of the time, not everyone truly thinks or feels the way I do about this disease.
In all seriousness, if you really do have a question or want to know something about the way I'm feeling, I'll do my best (pinky promise) to tell you the truth lol! ;)
But really, isn't that what this blog is for? Me unleashing all (almost) of my thoughts and feelings and opinions out into the world...well the internet world lol!
Tuesday, February 9, 2016
One more day
One more day.
If I can just make it one more day then I know I've got what it takes.
One more day and then I can crawl into my bed and just forget my problems.
One more day.
Come on body, push yourself, one more time...one more day.
I've mentioned on here before if I get really emotionally drained or stressed I'll normally just remind myself what day it is.
Today is Tuesday.
Lately, my mantra has been one more day.
I think as counselors in this field, we take for granted the things we are taught.
I took a substance abuse class in my masters and I TA'd it last semester.
Everything I learned and then taught in that class didn't really mean anything to me at the time.
I wasn't interested in that population and I knew I was too naive to work in that setting.
"Oh you say you haven't had a drink in 3 weeks, that's amazing!! Congrats!!"
I'll literally believe anything they tell me!
But learning about your clients experiencing something and thinking you know what it's like and experiencing it yourself are two completely different things.
That's why I want to work with people with disabilities.
I can truly empathize with them.
So up until the last 2.5 weeks, I thought I understood what it was like to withdraw from a drug.
Now I constantly joke about how I'm addicted to my medication. My body cannot function without it.
That statement has never been more true.
Let me tell you about the last 2.5 weeks and you'll see why. You're also about to see a different Kara than the Kara you know. I was torn on whether or not to write about it all, but after the week I've had, I want to spread the word.
It's all about awareness, right?
I stopped taking my prednisone on the 20th of January. For those of you who don't know what this drug is, it's the miracle steroid. It can make you feel like a million bucks or it can make you feel like a bloated whale. It does both, but it helps you move so you endure it. I've been on this evil little pill for nearly 9 years. I've never been off of it for more than a week, that I can recall. I've also been on insane amounts of it before too. So when you think, "Oh, one little pill? That's nothing." No. I've been on IV bags of this.
It was time I get off of it for many reasons. My doctors wanted me off, my momma wanted me off, and I need to get allergy tested (this med suppresses my immune system and it suppresses things I could potentially be allergic too).
The first 3 or 4 days were easy. I wasn't wanting to eat everything in sight, I was a little achy but nothing I couldn't handle, and it was nice taking one less pill a day.
It wasn't until the end of the first week that I started experiencing the withdrawal symptoms.
Now let me pause here and just throw in that I didn't fully know what was happening to me until I started researching it. I found this article and sent it to my mom. She had also found similar results, which made me feel a bit relieved.
http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/
So this article mentions Body aches, depression, dizziness, fatigue, HPA changes, mood swings, joint pain, and a skin rash. All of which I have now experienced. And all of which can last up to a few months. Yay.
Now back to the story!
So I had started getting extremely dizzy and my brain was getting fuzzy. This worried me. I never really get dizzy and I've never experienced the brain fog that comes with Arthritis. So I called my mom and that's when she sent me more information and I was able to find the article above. It took me two more days before I called the doctor. The real game changer came when my professor called me out on it by asking if I was ok because my eyes were unfocused and I didn't seem like myself. That's when I knew that if others were noticing, I needed to do something about it.
Called the doctors, got tons of labs drawn, 2 EKG's, and then I waited. During this time I was (and still am) checking my sugar. If you read on the list (I only listed the ones I was experiencing) low blood sugar is listed. This is because the steroid pretty much takes over your glucose and when you get off, you're body doesn't know how to produce it anymore. Same thing with the HPA changes.
Well as it turns out, my blood sugar wasn't dropping. It was spiking into the 150s and 160s and then dropping to the 80s within an hour and a half. That, in my opinion, is what was causing the dizziness.
BUT! None of my doctors really believed me. Or if they did, they didn't say so and acted like this was completely normal and nothing was wrong with me. My labs came back fine, for the most part, and they just told me to continue monitoring things.
Really.
So at this point we are half way through week 2 and the mood swings and depression hit.
I'm aggravated that my labs are showing what I'm feeling, I'm ticked off that the doctors aren't validating my feelings, and I'm livid that these are the symptoms I'm having.
Give me pain! I can handle that!
Give me a rash! Lord knows I've been there!
Give me something to make them notice that I'm not okay.
I was feeling like I was losing my mind, my temper, and my patience all in one.
I wanted to bite people's heads off for no reason. Every little thing annoyed me and I didn't know why. I didn't have a legit reason to get mad or upset or cry, but I did.
I think I cried probably 3 days in a row and I rarely cry.
I just wanted proof and I didn't get it.
I've never felt that low and that mad before. It was totally out of my control. I would go from being normal and feeling like "I've got this" to absolutely screaming at myself because maybe it was all in my head. It was a rough 3 days.
Then mom tagged me in this article on facebook and I felt a little less crazy:
https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/
Other people felt this way too. They knew exactly what I was going through with the doctors, hating that they couldn't do anything to fix it, and just wanting answers. Having a scientific explanation helped me. Knowing that there was a reason and that I wasn't just losing it pushed me to not give in and take a prednisone pill.
Because it is that easy. I have them in my bathroom right now. I bet you 100 dollars that I could take one of those and in 3 days be back to the old Kara. I told my doctor this too. It's that simple.
But I didn't lose my self-control. Still got that!
After the emotional rollercoaster that was a few days ago, the dizziness has decreased to once or twice a day and I'm no longer feeling as mad or depressed as I was. The mood swings have nearly gone so the emotional aspects have subsided for now lol! Fingers crossed. But it seems as one symptom goes away, another pops up. So currently my rashes are back (totally jinxed myself with that one) and the amount of pain I'm in is increasing.
But in the grand scheme of things, those I can handle. Those I got.
It's the "trying to control all of your emotions when you just want to explode for no reason" and the feeling of passing out that I have trouble with.
I was talking to my friend the other day and explaining that I was crying for no reason and that I didn't like that. She laughed and said, "Kara, you always have a reason to cry". I think that helped.
Just like in counseling, sometimes all we need is validation for our feelings. Our doctors seem to forget that. If they can't visually see the numbers change or see the affects on your body (by golly they can now because of my rash!) then it's not happening to them. Or maybe it is, they just don't have answers for it.
That's something that we need to change. That's why I write on this blog. It's all about awareness.
One more day.
One more day and maybe this will pass.
One more day and maybe research will be done in order to find answers.
One more day knowing you aren't alone in this fight.
Totally didn't mean for this to happen, but this was stuck in my mind after writing this lol! And now I'm totally cracking up so i'm just going to leave this here!
https://youtu.be/-qkf0fLU2Ao
If you don't feel motivated after watching this, then I just can't help you anymore lol!
But really, thank you for reading and sharing this blog. If it wasn't for others who have arthritis and reading their posts, then this week would have been even more difficult to get through. I only hope that others will feel the same! :)
If I can just make it one more day then I know I've got what it takes.
One more day and then I can crawl into my bed and just forget my problems.
One more day.
Come on body, push yourself, one more time...one more day.
I've mentioned on here before if I get really emotionally drained or stressed I'll normally just remind myself what day it is.
Today is Tuesday.
Lately, my mantra has been one more day.
I think as counselors in this field, we take for granted the things we are taught.
I took a substance abuse class in my masters and I TA'd it last semester.
Everything I learned and then taught in that class didn't really mean anything to me at the time.
I wasn't interested in that population and I knew I was too naive to work in that setting.
"Oh you say you haven't had a drink in 3 weeks, that's amazing!! Congrats!!"
I'll literally believe anything they tell me!
But learning about your clients experiencing something and thinking you know what it's like and experiencing it yourself are two completely different things.
That's why I want to work with people with disabilities.
I can truly empathize with them.
So up until the last 2.5 weeks, I thought I understood what it was like to withdraw from a drug.
Now I constantly joke about how I'm addicted to my medication. My body cannot function without it.
That statement has never been more true.
Let me tell you about the last 2.5 weeks and you'll see why. You're also about to see a different Kara than the Kara you know. I was torn on whether or not to write about it all, but after the week I've had, I want to spread the word.
It's all about awareness, right?
I stopped taking my prednisone on the 20th of January. For those of you who don't know what this drug is, it's the miracle steroid. It can make you feel like a million bucks or it can make you feel like a bloated whale. It does both, but it helps you move so you endure it. I've been on this evil little pill for nearly 9 years. I've never been off of it for more than a week, that I can recall. I've also been on insane amounts of it before too. So when you think, "Oh, one little pill? That's nothing." No. I've been on IV bags of this.
It was time I get off of it for many reasons. My doctors wanted me off, my momma wanted me off, and I need to get allergy tested (this med suppresses my immune system and it suppresses things I could potentially be allergic too).
The first 3 or 4 days were easy. I wasn't wanting to eat everything in sight, I was a little achy but nothing I couldn't handle, and it was nice taking one less pill a day.
It wasn't until the end of the first week that I started experiencing the withdrawal symptoms.
Now let me pause here and just throw in that I didn't fully know what was happening to me until I started researching it. I found this article and sent it to my mom. She had also found similar results, which made me feel a bit relieved.
http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/
So this article mentions Body aches, depression, dizziness, fatigue, HPA changes, mood swings, joint pain, and a skin rash. All of which I have now experienced. And all of which can last up to a few months. Yay.
Now back to the story!
So I had started getting extremely dizzy and my brain was getting fuzzy. This worried me. I never really get dizzy and I've never experienced the brain fog that comes with Arthritis. So I called my mom and that's when she sent me more information and I was able to find the article above. It took me two more days before I called the doctor. The real game changer came when my professor called me out on it by asking if I was ok because my eyes were unfocused and I didn't seem like myself. That's when I knew that if others were noticing, I needed to do something about it.
Called the doctors, got tons of labs drawn, 2 EKG's, and then I waited. During this time I was (and still am) checking my sugar. If you read on the list (I only listed the ones I was experiencing) low blood sugar is listed. This is because the steroid pretty much takes over your glucose and when you get off, you're body doesn't know how to produce it anymore. Same thing with the HPA changes.
Well as it turns out, my blood sugar wasn't dropping. It was spiking into the 150s and 160s and then dropping to the 80s within an hour and a half. That, in my opinion, is what was causing the dizziness.
BUT! None of my doctors really believed me. Or if they did, they didn't say so and acted like this was completely normal and nothing was wrong with me. My labs came back fine, for the most part, and they just told me to continue monitoring things.
Really.
So at this point we are half way through week 2 and the mood swings and depression hit.
I'm aggravated that my labs are showing what I'm feeling, I'm ticked off that the doctors aren't validating my feelings, and I'm livid that these are the symptoms I'm having.
Give me pain! I can handle that!
Give me a rash! Lord knows I've been there!
Give me something to make them notice that I'm not okay.
I was feeling like I was losing my mind, my temper, and my patience all in one.
I wanted to bite people's heads off for no reason. Every little thing annoyed me and I didn't know why. I didn't have a legit reason to get mad or upset or cry, but I did.
I think I cried probably 3 days in a row and I rarely cry.
I just wanted proof and I didn't get it.
I've never felt that low and that mad before. It was totally out of my control. I would go from being normal and feeling like "I've got this" to absolutely screaming at myself because maybe it was all in my head. It was a rough 3 days.
Then mom tagged me in this article on facebook and I felt a little less crazy:
https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/
Other people felt this way too. They knew exactly what I was going through with the doctors, hating that they couldn't do anything to fix it, and just wanting answers. Having a scientific explanation helped me. Knowing that there was a reason and that I wasn't just losing it pushed me to not give in and take a prednisone pill.
Because it is that easy. I have them in my bathroom right now. I bet you 100 dollars that I could take one of those and in 3 days be back to the old Kara. I told my doctor this too. It's that simple.
But I didn't lose my self-control. Still got that!
After the emotional rollercoaster that was a few days ago, the dizziness has decreased to once or twice a day and I'm no longer feeling as mad or depressed as I was. The mood swings have nearly gone so the emotional aspects have subsided for now lol! Fingers crossed. But it seems as one symptom goes away, another pops up. So currently my rashes are back (totally jinxed myself with that one) and the amount of pain I'm in is increasing.
But in the grand scheme of things, those I can handle. Those I got.
It's the "trying to control all of your emotions when you just want to explode for no reason" and the feeling of passing out that I have trouble with.
I was talking to my friend the other day and explaining that I was crying for no reason and that I didn't like that. She laughed and said, "Kara, you always have a reason to cry". I think that helped.
Just like in counseling, sometimes all we need is validation for our feelings. Our doctors seem to forget that. If they can't visually see the numbers change or see the affects on your body (by golly they can now because of my rash!) then it's not happening to them. Or maybe it is, they just don't have answers for it.
That's something that we need to change. That's why I write on this blog. It's all about awareness.
One more day.
One more day and maybe this will pass.
One more day and maybe research will be done in order to find answers.
One more day knowing you aren't alone in this fight.
Totally didn't mean for this to happen, but this was stuck in my mind after writing this lol! And now I'm totally cracking up so i'm just going to leave this here!
https://youtu.be/-qkf0fLU2Ao
If you don't feel motivated after watching this, then I just can't help you anymore lol!
But really, thank you for reading and sharing this blog. If it wasn't for others who have arthritis and reading their posts, then this week would have been even more difficult to get through. I only hope that others will feel the same! :)
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