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Monthly Archives: January 2012

Hands

For those of you who are following the story of my brother Brad who has Lupus:  I talked to Brad today, he says that there is potential he will be released tomorrow. I pray that is the case, he’s been in the hospital since the 16th I do believe.  He said the medication he is on for his heart has kept his heart rate down and that he isn’t experiencing soreness like he was.  I am anxious about tomorrow, let’s hope he will get the “okay” and will finally get to come home!  Every Monday Braden goes to swim lessons at the YMCA, but because Brad and Lindsey are in Cleveland, Braden has missed two lessons.  So, last night Jackie and I, along with Lindsey’s mother Becky decided to take him, and I got to watch Braden at his swimming lesson!  Jackie went in with him and it was so darling watching him splash and kick in the water.  Not to mention he was super cute in his itty bitty swim trunks.

On Sunday after taking all six pills, (Sunday was the day I chose to take the four methotrexate’s along with folic acid and plaquenil) I noticed a headache and it’s continued to linger as I type this.  It’s not the kind of headache that is overwhelming, but it is annoying at times.  I am assuming it is from my medication, I haven’t checked to see if a headache is a possible side effect, though it seems like a headache is a side effect for everything.  I’ve been feeling pretty good, though my right wrist has been bothering me on and off.  While I was at WinterJam- a concert I mentioned in my previous post, I squeezed my wrist cause it was hurting and a sharp pain lasted for about 20 seconds that I’ve never had before.  Luckily I haven’t had that pain since, but it sort of frightened me.  However, today my wrist is bothering me again, it’s unfortunate that I lost the cartilage due to damage.

In order to stay fit and limber, I want to start working out.  With Brad being in the hospital, I haven’t really found much time since I help babysit Braden almost everyday.  Lucky for me, my best friend Bre offered to take me as her guest to the YMCA and I am looking forward to going later this week.  I’ve been told that walking and yoga are beneficial as well.

If Brad is released tomorrow I will definitely post & I promise it will be a celebration!  Keep smiling!

Romans 12:12

“Be glad for all God is planning for you.  Be patient in trouble, and always be prayerful.” (NLT)

*a few pictures of my hands taken today 1-31-12

 
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Posted by on January 31, 2012 in My battle with RA

 

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I am able

Since I will not be home over the weekend, I decided that I wanted to do a short update!

First, overall, I have had a good week with my RA!  I have only had minor pains here and there, but other than a swollen knee on Sunday, I can’t complain and I couldn’t be more pleased.  There are times when the fact that I have RA slips my mind, as if I don’t even have it.  I feel very fortunate that I am able to complete everyday tasks without pain, unlike so many other sufferers.  To be honest, the little things that I can accomplish make my day more joyous.  For instance, I am able to open a new jar of pickles, yes I know this sounds silly, but with my damaged wrist it challenges me to get jars and bottles open.  I am able to lift Braden, I just have to be careful to not let my right wrist take the brunt of his weight.  I am able to walk around a store without having to fret over sore knees.  In 2010, that would have been a different story, but now, I am able, I can, I will!

Brad is STILL at the Cleveland Clinic, it has been something like two weeks since his arrival.  He was moved out of ICU today and has a physical therapist helping him gain strength.  We all are hoping for the best and that perhaps he could even be released this weekend, but we will just have to wait it out.  He’s such a strong man, and I can’t wait until he gets to sleep in his own bed, eat a home cooked meal, and relax at his home.  It’s been way to long, it’s time he gets better, RIGHT!

I have a fun weekend planned, and it involves Columbus!  I leave tomorrow afternoon and will be staying with some dear friends.  I also will be attending Winter Jam on Saturday night, and I couldn’t be more excited.  I love going to concerts and the thrill it offers.  Here’s the website in case you are curious as to who is playing and what it’s all about! —>http://www.jamtour.com Oh, and I just so happen to be the lucky one who gets to spend an entire weekend with Matt!! (This is a big deal considering we’re in a long distance relationship).

 
I am very happy that I’ve discovered the wonderful world of blogging, and I am not quite sure how I’ve gone so long without it!  It is so incredibly fun and I find it relaxing and helpful.  I hope the next time I post, it will be that Brad has been released.  But, until next time, keep praying & stay encouraged.

*kudos to pinterest for the image

 
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Posted by on January 26, 2012 in My battle with RA

 

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Anticipation at its finest

The past three days in a nutshell.

Talk about a hectic, unpredictable past couple of days…on Sunday, Brad was moved into ICU, because during the night his heart went “haywire” and the squad was called in to move him into a different room.  My parents left for Cleveland Sunday morning and have been there ever since.  Everyone, especially Brad and his wife Lindsey are wearing down more and more each day mentally.  It’s incredibly difficult not to allow fear plague your mind as you wait for the results, or answers.  We just want to KNOW what is happening to him.  Also, on Sunday my left knee decided to act up, and was swollen and stiff.  I certainly can not wait until my medication kicks in, though I was told it will take months.  On the plus side, the numerous amount of supporters have been phenomenal throughout all of this.  My boyfriend Matt, and my friend Brandon stopped over Sunday afternoon and were a huge comfort as it helped take my mind off of worrying.  After they left, Jackie and I visited with my aunt, grandma, and cousins.  We played some games and guitar hero.  It was just what we needed, especially me.

Monday was another disappointing day.  The test that Brad was supposed to have done for his heart got pushed back for the third time, due to low blood pressure,  and was rescheduled for Tuesday at 3:00.  Again, I was blessed with friends who were caring and were there for me as I needed to cry and express my concerns for Brad.  It’s amazing how your life seems to stop when someone you care for is hurting.  When they hurt, you hurt.

Tuesday(today) has been a much better day!  Brad FINALLY had the heart test, and the vegetation/spot they found on his heart is no longer there(thank you God)!!  Brad is still in ICU for the night so that the Dr.’s can keep a watch on his heart rate and blood pressure.  I was told that Brad wasn’t allowed to eat before the test, but afterwards he had such a big appetite that he requested a Big Mac & fries(okay, not the healthiest choice when you are in ICU).  But nonetheless, I was glad to hear his appetite is slowly coming back.

Jackie and I have been babysitting Braden each day from about 1:30-7.  He needs attention, and a lot of it.  He’s constantly running around the house and giggling.  Each day we have a mini dance party because Braden loves dancing.  As soon as he hears music with a good beat, his little knees start to bob and then he does a little hop skip dance.  It’s priceless and melts my heart every time, it never gets old.

I have not had any major side effects from my medications thus far.  I had a small stomach ache the first two nights, but ever since I have been doing fine.  Another annoyance I am experiencing though, is a sharp pain in my right pointer finger.  Coincidentally it’s the most important finger I need to type with.  That is why I have chosen to keep this blog rather short, as I usually get carried away with words.

Updates soon-I hope!  Until next time, have faith & keep smiling.

Philippians 4:6

“Don’t worry about anything; instead pray about everything.  Tell God what you need, and thank Him for all He has done.” (NLT)

 

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greater than 250

Before I begin, I want to genuinely thank each person who found themselves reading my first blog entitled, “The Challenge”.  Your support drives me to continue to keep a positive attitude, because at times it’s hard to not feel discouraged after a “flare up”. (Basically a flare up is when you experience an enormous amount of extra pain, excess swelling and fatigue-they are absolutely no fun and can last for days, weeks, or months).  If I can find a topic I’m passionate about, I do not have a single problem typing about it for long periods of time.  I will try my best to update my blog a few times each week as I continue the fight with RA and appreciate your comments, prayers, and encouragement!  Also, I decided to add another category, as some of you may have noticed called, “The Adventures of Braden Bradley”.  The love I immediately gained after meeting my nephew over 18 months ago continues to grow, and it will be fun for me to share with you the moments that I treasure with him.  Lastly, if any of you ever have a question about RA, my experience with RA, or any other questions regarding my medications that I take- which will be explained further in this post, please don’t hesitate to comment!  THANK YOU!

So…to bring everyone up to speed from these past few days, on Thursday at 3:30 I had my second appointment with my Rheumatologist(rheumy). Thursday I experienced minimal/tolerable pain, which is a huge blessing in itself.  As many of you can relate, just because your appt. is scheduled for a certain time doesn’t mean you actually “get in” at that time.  Dr.’s offices are like a waiting line at Cedar Point.  Though the anticipation behind standing in line for an exhilarating roller coaster doesn’t add up to the “excitement”(NOT) one experiences during the waiting process at the Dr.’s office, you’d be surprised to see the similarities.  For example, when waiting in line at Cedar Point for let’s say…Millennium Force, you unintentionally observe the people in front and behind you and take note of people’s clothing, weird laughs, or sweaty armpits.  Let’s hope there aren’t any sweaty armpits in the Dr.’s office… but I found myself observing the people around me-everyone does it.  Another example is the false hope you feel, like when the line for MF moves yet you look ahead and realize your wait is still over an hour long, similar to when the door opens at the Dr.’s office and you think your name is going to be called when in reality it won’t be.  So, as I was waiting, there were three loud yet very entertaining people.  If my guess is correct, it was a grandma, her daughter and her granddaughter.  The grandmother had a walker and from what I could tell, was probably in her late 70’s-early 80’s.  The grandmother was filling out her paperwork which asks generic questions such as: do you have trouble getting out of bed, can you bend down easily, can you lift an object over five pounds, etc.  After listening to her answer the questions as her daughter read them aloud, I learned that she deals with many pains.  I couldn’t help but wonder if this is what my future looks like.  A small amount of discouragement was creeping into my mood when out of the blue her granddaughter, who appeared to be in her late twenties jokingly said, “Grandma, maybe we could use your arthritis as an advantage…like maybe we could get front row seats to a “Lady Gaga” concert.”  Her grandmother to my surprise replied with, “Yeah, good idea, and I could even send her a telegram explaining to her all the troubles I experienced just getting to her concert.  And you know what, I could be her grandma too.”  Then her granddaughter replied with, “You know, that means you will have to wear crazy outfits!”  The grandmother replied, “Okay, I don’t mind!”  My discouraged mood seemed to have left me after I heard their conversation because I can only hope to have half the spunk that grandma has.

Finally my name was called and after getting my weight, blood pressure, and heart rate checked, I proceeded to wait for a while until my Dr. greeted me.  He right away said it doesn’t look good, you definitely have RA.  You see, in order to determine that I have RA, the blood work they took last appt. shows how many “antibodies” I have in my system that determine my level of inflammation.  The test only goes up to 250, and my tests came back >250. He then explained to me the medications I must be put on.  The first, plaquenil, a treatment more commonly used for treating malaria infections, is also a good medication for sufferers of lupus or RA.  Plaquenil has the capability of reducing swelling and pain.  Some side effects include: nausea, loss of appetite, dizziness.  The second is called Methotrexate.  Used in much higher dosages, it can actually be used to treat cancer patients.  Methotrexate’s purpose is to interfere with cell growth ultimately suppressing the immune system.  Side effects: nausea, vomiting, dizziness. I must take four pills at the same time, once a week.  Lastly, I must take folic acid every day because of the effects of my other medication.  If I fail to take it, I could have damage done to my eyes.  Folic acid has very little side effects and is a B-vitamin that is needed to form healthy red blood cells.  I was supposed to be prescribed prednisone, a steroid, but my Dr. never called in the order, which I’m glad cause there are numerous amounts of side effects that come along with it.  Bottom line, unless things change, I will be taking these for the rest of my life.  At twenty, I’m not fond of being put on medication but I keep telling myself, it can only help.

Friday I had minimal pain.  I picked up the prescriptions and kept praying that they would be inexpensive.  Prayers were answered, I paid less than $20, thanks to insurance.  I will begin treatment Saturday, after I read the large amount of paperwork that came along with my meds.  I am very thankful for a wonderful pharmacist-Kent Zellner.  He explained each medication to me and seemed genuinely interested in my well-being.  I suppose other than minimal pain, my only complaint is the fatigue that I am plagued with on a daily basis.  It’s the kind of fatigue where your eyes are heavy, your body feels weak, and you feel like you could sleep for days.  Thankfully I do not have sleeping issues at this time, I normally can fall asleep within minutes.

As I close this blog this Saturday afternoon, I ask that you please continue to pray for my brother Brad.  Ever since Monday, he’s been admitted at the Cleveland Clinic and we are going to visit him today.  He is a Lupus warrior, but unfortunately he’s now dealing with anxiety and anxiousness as he’s been there longer than he’d like.  His heart rate speeds up when he does simple activities, like getting up to use the bathroom, or walking around.  He will have a heart test done in a few days because they found a small “vegetation”/spot on his heart.  We are hoping antibiotics can clear that up.  He needs our support, and we are more than happy to comfort him in any possible way.

Until next time, keep smiling.

Philippians 4:13

“For I can do everything with the help of Christ who gives me the strength I need.” (NLT)

 
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Posted by on January 20, 2012 in My battle with RA

 

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Meet Braden

Braden is my 18 month old nephew.  He inspires me to stay active as it is not an easy chore chasing around a little one!  Braden is the son of my brother Brad and his beautiful wife Lindsey.  Brad is currently battling Lupus and is at the Cleveland Clinic, prayers are appreciated!

Braden’s Likes: Cheese Puffs, Barney, dancing, giggling, giving high fives, croutons, giving kisses and mac & cheese.

Braden’s Dislikes: Peppers, when you don’t get up and dance when he points at you, when you put away the crayons as he’s coloring, saying goodbye.

Stud muffin

Swinging, Smiling

About once a week I will be posting a picture or video of Braden simply because if he brings a smile to my face, I have a feeling he can brighten your day too!

 
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Posted by on January 19, 2012 in The Adventures of Braden Bradley

 

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The Challenge

Sometimes in life, challenges occur that inspire us to rise above them.  So with humility and a strength we didn’t know we possessed, we must accept the challenges for what they are, roll with the punches, and keep our eyes on what’s really important.  So this is me, rising above, accepting the challenge of battling a life long fight with rheumatoid arthritis.  This is my story, a combination of the raw feelings that I experience as I deal with the pains and weaknesses that try to bring me down, and the happy times when I feel like any common, healthy 20 year old.

Inspiration behind this blog:  Like so many others, I have passions that overwhelm me and inspire me to write about them.  A few of my passions include: God,  displaying love to those who mean the most to me, the ability to encourage, and music.  However, I never would have thought that a sore pinky would lead to the diagnosis that would rock my world-not in a good way.  I do not ask for or desire sympathy, I do not want you to feel sorry for me, I do not desire attention.  This is MY way of expressing my feelings about my daily struggle with a disease that does not care about who I am.  If it could talk, it would put me down, degrade me, humiliate me, but lucky for me I’m the one that does the talking.  In order to battle this disease, I have an army of faithful supporters who have my back.  A huge thanks to my family who is sensitive to my needs on my worst of days, to my friends who always offer an encouraging word of advice, to my boyfriend who is always willing to listen and care for me, but most importantly I thank God who constantly reminds me that He is ultimately in control of ALL things and will take care of me.  I truly hope you feel blessed by my blogs as I share with you details of my life that I normally keep hidden.

What exactly is rheumatoid arthritis?  Rheumatoid Arthritis, or RA for short is an auto-immune disease that attacks both the good and bad cells in the immune system.  It causes inflammation/redness of the joints and surrounding tissues.  It can also attack your organs.  The cause is unknown-though many studies have been done that suggest otherwise, and unfortunately like so many other diseases and cancers, there is no cure.  There are different levels of RA, and it can arise at any age.  Normally, the older population feels the most effects from all types of arthritis, but there are those, like myself who get diagnosed at a much younger age.  (for a further explanation visit http://en.wikipedia.org/wiki/Rheumatoid_arthritis).

My story with RA: Thinking back, I suppose the first signs that I can remember started late 2008.  It was during Christmas, and my right pinky looked like it had been jammed-yet I had never actually done a thing to hurt my pinky.  It wasn’t until the summer of 2009 that I decided to get blood work done that would determine if I had any type of arthritis.  I remember that summer, as I was planning my college to-do list, that large joints in my body started to ache.  The kind of ache that was dull, persistent and annoying-similar to the after effects of an intense workout.  I figured it wasn’t a “big deal” and that a nice warm bath, massage, and a few lazy days would cure me of these pains.  I vividly remember being in New Orleans, in a hotel room with my friend Cassie when my cell phone rang.  It had been my mother and she told me that the blood work came back positive for having arthritis.  I can recall the tears that followed the phone call, the fear, the uneasiness as I was away from home.  Then the not so memorable times at college when my ankle would swell so you couldn’t see the ankle bone, dropping to a weight of 99 pounds, feeling as if not a single person could ever know what I was experiencing.  My knees would ache as I walked to class, I could barely carry my laptop and bag to class without being exhausted.  The times when I would take a nap after every class because I had no energy otherwise.  Feeling ill, feeling nauseous, feeling hopeless.  Flash forward to now.  Overall, my fight in 2011 was much more tolerable than 2010.  After seeing my brother become diagnosed with Lupus-another auto-immune disease within these past few months, I immediately jumped on the idea of finding a Rheumatologist for myself.  My initial appt. on Jan. 4th of this year was simply a reassurance that I was indeed correctly diagnosed with RA, but also I found out about my right wrist.  They did their normal testings and blood work, and requested that they x-ray my hands/wrists.  My right wrist, from a few years of damage is almost bone on bone.  Bone on bone means that the cartilage has been worn away, cartilage=cushion.  No wonder it hurts so bad!  My Dr. also explained that an x-ray of non-arthritic hands would display bright white finger bones, mine however in some areas looked gray-signs of weakening of the bones from RA.  My next appt. is scheduled for this Thursday, the 19th.  I believe I will be put on several different medications, and I will certainly keep you updated as I find out what my blood work has to say about my condition.

A few pictures that sum up my journey thus far with RA…

Unhappy Ankles-2009

I weighed a little over 100 lbs in this picture- June 2010

Curving fingers-July 2011

Swollen Right Knee- Jan. 2012

Comparison-Jan. 2012

Jeremiah 29:11- One of my favorite verses that means A LOT to me.

” For I know the plans I have for you”, says the Lord.  “They are plans for good and not disaster, to give you a future and hope.” (NLT)

 
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Posted by on January 18, 2012 in My battle with RA

 

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