Friday, February 26, 2010

Going on an adventure

We're getting ready to leave for Atlanta... so say a couple prayers that I don't freak out on the plane! :)  I woke up this morning with some slight muscle pain and a low grade fever... not sure if it was a fluke or if "my hunch" is right and my disease is becoming more active.  Lovely how this occurs at the same time I'm facing my fear and flying again... oh well... God will see me through! :)  I have my blood test on Monday so I'll know then whats up!  I'm hoping with this and the combination of not sleeping well due to some family stuff will help me pass out on the plane!  But anyways...  Can't wait to post pictures of our weekend!  Hope everyone has a wonderful weekend!

Friday Thankfulness:

1... Cinnamon poptarts
2... Long phone calls from Molly... I think we talked 2 hours the other day
3... A good book on a sunny afternoon
4... The fact that the Real Housewives of NY is starting next week... yes I know its sad but I absolutely LOVE that show
5... A margarita... I needed one after last week
6... An e-mail from my dad
7... Painting my toenails... first time I've been able too in 1 year
8... Laffy taffy... LOVE LOVE LOVE
9... Seeing Chris meet up with friends... 3 times this week :)
10... The fact I'm able to go to Atlanta to spend time with my family... Chris and I NEED this getaway! :)
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Wednesday, February 24, 2010

Test results...

Well... on Monday I had my EKG, which showed my heart rate high, it was registering between 120-130.  "I" believe this is due to the prednisone and the high anxiety.  I also had an echocardiogram and will discuss the results with my pulmonologist on Monday, March 8.  Other than that I have a blood test on Monday, March 1 and we'll know after that when I'll need to do my next infusion.  The next few weeks are filled with doctors appointments, which is a little annoying, but hey... I gotta do it! :)

I've been feeling pretty good for the most part.  I still have my usual soreness in the morning and some slight fatigue, but not too bad.  My raynaud's phenomenon has been acting up due to the cold weather and I have been having some slight breathing issues, so we'll have to see what the next appointments say.  I have a feeling I'll be doing a Rituxin infusion in the near future.

Something a little depressing is that I have more striae (stretch marks) forming on the front of my stomach and arms... not sure what I can do about them (pretty much nothing) but that was a little discouraging.  Other than that though I'm thankful for fever free days and the energy to do some things.

Starting to pack tonight for Georgia... a little anxious about the trip.  This is the first time I've been away, besides to my parent's house in Iowa, since I've been sick.  I absolutely hate to fly, even before I got sick, but with the prednisone which increases my anxiety it should be interesting.  I bought 4 magazines today and I'm hoping between that and Chris and my parents I should be good to go! :)  All in the name of seeing my nieces! :)  Chris and I haven't been to GA for about 4 years... can't wait to get down there.  But... they're suppose to be COLD! :(  Ugh... wishful thinking for just some sunshine and any temp. above 30 degrees!

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Sunday, February 21, 2010

Thankful for good days...

I just have to say that I'm thankful for good days.  Today was a great day full of family, friends, laughter and love.  I was able to make Chris breakfast and a wonderful homemade chocolate cake.  We also had a visit from Chris' dad who we haven't seen for awhile and are planning on going to see one of Chris' friends for dinner.  It's nice having little things to look forward too. 

Last night, although my anxiety was high was a lovely time.  I actually made it until 10:30 pm... which is almost a record I think.  I was super excited for Chris... seeing him around his friend Lucas was great.  His face was lit up the whole time... it was great to see him with an old friend.  We were so happy to share in the blessing of Melissa and Lucas's engagement and can hardly wait for their wedding in September.

My body is feeling fairly good today... which a great excitement for me.  I almost forgot to take my noon dosage of ibuprofen.  I have my EKG and echocardiogram tomorrow... so hopefully we can mark off one more organ that we don't need to worry about for awhile.  Once I'm through that test its smooth sailing for the week... although its somewhat busy for us I can hardly wait until noon on Friday... that is when our plane leaves for GEORGIA!  Chris and I really need this little BOOST in our morale from my family and the distraction from "everday" normal routines will be great.  I don't think we'll have super nice weather, but hey for us Minnesotians anything warmer than 30 degrees will be a tropical heat wave. 

Can't wait to post pictures.  But for now... here are some pics from Mia's "neighborhood" birthday party on Saturday... my mom made her dress... isn't it too cute!?!

Birthday girl Mia

Big sister Keegan

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Saturday, February 20, 2010

Nothing like a good PIXAR movie to cheer you up!

Anyone that knows me, knows that I am a movie fanatic.  I absolutely love curling up on the couch with a good movie and a cup of tea... a cat in my lap and Chris next to me is the icing on the cake as well.  Well, Chris got me two amazing movies for Christmas...  "Up" and "Meet the Robinsons."

I absolutely love the movie "Up."  If you haven't seen it I would definately

"Meet the Robinsons" has become one of my favorite movies.  I love the quirky humor in it and the life lessons that come from watching.  I officially decided that I want "Lewis" as a child.  Anyways, I absolutely love the song, "Little Wonders," by Rob Thomas at the end of of the movie... thought I would share the lyrics and its listed as number 2 on our playlist.  The motto of the movie is "keep moving forward."  Something I remind myself every day! :)

"Little Wonders" by Rob Thomas
Let it go

Let it roll right off your shoulder
Don't you know
The hardest part is over
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away,
But these small hours
These small hours
Still remain

Let it slide
Let your troubles fall behind you
Let it shine,
Till you feel it all around you
And I don't mind
If it's me you need to turn to
We'll get by
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These small hours
Still remain

All of my regret
Will wash away somehow
But I cannot forget
the way I feel right now

In these small hours
These little wonders
These twists and turns of fate
Yeah, these twisted turns of fate
Time falls away
Yeah, but these small hours,
These small hours
Still remain

Yeah, oh they still remain
These little wonders
All these twists and turns of fate
Time falls away
But these small hours
These little wonders
Still remain

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So tonight is one of Chris' friends engagement/graduation party.  I'm super excited about.  He doesn't live in the cities and doesn't come home very often, so I know how excited Chris is to see him.  We haven't seen him or his girlfriend since our wedding... craziness.  A lot of people there do not know I'm sick or haven't seen me in a LONG time... I'm a little anxious, as I do look very different.  Its times like these that my anxiety and self-consciousness sets in... I keep dreading the "are you pregnant" question due to my swollen face and stomach from the prednisone.  Also contributing to the fact that I actually don't know these people very well, some my comfort level is low.  I'm super excited for Chris though to get to see some of his friends, as it doesn't happen very often.  Wishful thinking that tonight is a success! :)  And that I can find something to wear! :(

A milestone today, I was able to walk out side for a bit.  The lungs didn't effect me too much until I stopped and still I can tell they are getting a tad bit stronger.  My muscles didn't burn till the end of the walk... and it was a good burn!  Not the burn where "hey, i'm dying over here."

On a sad note, my grandmother, Mamom, is in the hospital.  She is having some stomach issues.  She's 87 years old, so her body is slowly giving way.  My mom talked to her today and said she didn't sound too good, but I'm planning on calling her tomorrow and hopefully her spirits will be a little bit higher.  Saying extra prayers for her... for peace and comfort.

So the weekend is met with many different emotions and feelings...
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Friday, February 19, 2010

Thankful its Friday :)

Friday Thankfulness:

1... My kitty sleeping under the covers with me
2... My H20 body scrub and lotion
3... Waking up to a NEW day :)
4... Fun pick me ups from sorority sisters... thanks Nicole! :)
5... Finding a new recipe to try
6... Meeting up with old friends... can't wait for Saturday
7... Talking with my sister-in-law, Kelly... she always cheers me up!
8... My newly restored pink i-pod... it hasn't worked for 2 years
9... Cuddling on a cold night with my husband
10... The fact that its Friday and Chris will be home this whole weekend! :)
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Thursday, February 18, 2010

Day 6...

Well... I've officially reached Day 6 of going down on prednisone.  I haven't had a fever since Tuesday... which is great.  I'm still very tired and my legs are quite sore.  The muscle cramping has increased as well.  Taking it day by day.  I've actually been sleeping until 2-3 in the afternoon... not much motivation to do anything due to just not feeling well.  Hopefully by the weekend I'll start to perk up a little bit.

Chris is home today working, which is great, as I have someone in the house... even though he works non-stop, its still comforting.  My lungs have been doing "okay."  I've been getting more short of breath and coughing, but it seems that cough drops and the "neti" pot have helped.  We're closely monitoring this, as prednisone has helped me breath and stop the progress of mylung disease, hopefully the rituxin is still working so that the lung involvement doesn't become an issue.

My heating pad has become my best friend this week.  It really helps with the arthritis pain and muscle soreness.  It accompanied me while we watching Shaun White win the gold last night... could he be any more amazing???

Well the sun is shining here in Minnesota, although its still quite cold.  Looking forward to a week from tomorrow being in SUNNY GEORGIA! :)  Fingers crossed!!!!

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Tuesday, February 16, 2010

What it's like to be a cat...

Well... 3 am rolled around this morning and we offically had the first 100 degree fever, chills, and intense muscle pain.  By 6 am... the fever reached 101.6.  I expected it, but it doesn't make it any easier.

Well I've always said, I wish I could lead the life of my cat... I officially did that today.  Hannity and I just woke up and its about 3 pm in the afternoon.  Luckily, the fever was gone by 11 am today, but then came the fun part of sweating out everything and the fatigue has started to settle in.  Its a battle between temperatures for me... one minute i'm sweating and hot, the next my fingers are turning blue and i'm cold.  Very frustrating. 

Luckily... this afternoon I'm finding some relief.  Hoping to have a good evening with Chris and watch some good TV... laying low is good on days like today! :)

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Monday, February 15, 2010

Little speed bump in the road!

Well... unfortunately this blog finds me with a low grade fever and muscle pain... prednisone withdrawal has officially started.  I'm thankful it waited until have the weekend.  I'm trying to find my inner strength to get through this... hopefully by Thursday or Friday I'll start to feel better.

We got a NOT GOOD phone call today.  My blood work came back from my doctor's appointment.  Although my CRP (c-reactive protein, which indicates inflammation) lowered slightly (it is still about 8 times the normal range), my white blood count started to elevate again (this I expected) and my creatin-k count (muscle enzyme) is elevated and out of normal range again (this I did not expect).  So in a nut shell I have to go in two weeks and get my blood work done... if the levels have risen again we need to go through the process of getting funding approved for me to take another Rituxin infusion ASAP.  In my last blog I talked about starting a new drug, but unfortunately the clinic is not ready to administer it and probably won't be for a little while.

So after the phone call, Chris and I were kind of bummed.  The creatin-k count seems to have a direct relation to the decrease in prednisone from last month.  I'm hoping the Rituxin infusion doesn't wear off completely so I have to go back on prednisone.

We expected this "phone call" at some point, I just hoped I had at least another month before the Rituxin wore off.  Although we're trying to stay positive, its getting old after battling this disease for a year and a half.  I looked at the calendar for the next few weeks and I average 2 doctors appointments a week... not something to look forward too.  We were able to schedule the echocardiogram and ECK for next Monday, February 22.  Hopefully that test will go well without a glitch and we can have another "area" marked okay.

Good news though... we're going to Chris' friend's, Lucas, engagement party of Saturday.  Lucas is a good friend from high school, who Chris hasn't been able to see since our wedding.  I know he's looking forward to seeing his buddies and a "distraction."  Prayers that I will be able to accomany him.  Its not many times that Chris feels comfortable "leaving me alone" or that we can go to a group get together.  Positive thoughts for a good time! :)

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Down to 30 mg. of prednisone!!!!

Well... I'm officially on DAY 3 of tappering my prednisone down to 30 mg.  So far... not too bad.  I keep waiting for the extreme muscle pain to hit or the fevers, but so far just some slight muscle pain and itchniness of the skin seems to be the only withdrawal symptoms I have been experiencing... knock on wood.  I'm extremely tired, but that is something I plan on always expecting when I go down on the drugs.  So all in all... it hasn't been too bad.  I'm going to the bathroom a lot though, due to flushing the liquids out... pretty pumped about this.  Maybe by the time Spring time rolls around I'll be able to distinguish my cheek bones! :)

My doctor's appointmen on Friday went fairly well.  My doctor went to a conference where they talked about the releasing of a new drug, Actemra.  It just got approved by the FDA.  It sounds like I might be a really good match for it as it focus on lowering your white blood count and CRP rate... which is the only two things left we have yet to control.  It would replace the rituxin infusion.  She hasn't administered it to anybody so we'll see at my next doctor's appointment which route we're going to take.  The medicine consists of an infusion every month for about 45 minutes to an hour... not too bad considering.

Thanks for all the prayers.  Chris and I are extremely excited as it looks like since the going down on prednisone is going somewhat smoothly we'll be able to venture down South  in two weeks to spend the weekend celebrating Mia's 1st birthday... I can hardly wait to have our family together... they have truly been the moral support Chris and I have needed this past year.  Plus, my brother and his family always provide quite the entertainment and positive atmosphere... whether its Brants one liners, Keegan singing baa baa black sheep, Mia crawling doing the "worm," or just hearing Kelly laugh... Can you tell I love my sister-in-law and brother???? :)  Anyways... can hardly wait! :)
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Friday, February 12, 2010

Friday Thanksfulness... plus a neti pot

Okay... so I did the whole "neti" pot thing last night... not sure how I feel about it and I won't disgust you with the details... but it really does clear out your sinuses.  Hopefully that will help with the congestion and coughing... we'll see.  Needless to say... you really do flush water through your nose.  I think the best part about the incident was that I did read the ENTIRE instructions... the last part where  it says don't go to bed until an hour afterwards.  Well Chris and I laid down to watch a movie before bed and about 30 minutes in I randomly had water draining through each nostral... this proceeded to happen for about 20 minutes.  Yep... I know Chris was thinking thats attractive! :)

Friday Thankfulness:

1... Random "goofy" text messages from my amazing sister-in-law Kelly.
2... Finding a new recipe to try and LOVING IT... we tried "buffalo chicken soup" this week!  AMAZING!
3... The sound of the kitty purring at 5 am... he just wants food.
4... Chris kissing me good bye in the morning.
5... Sun reflecting off freshly fallen snow.
6... The start of the Winter Olympics... GO TEAM USA!
7... The restoration hardware blanket Chris' boss got for us for Christmas... its fluffy and cuddly and OH SO WARM :)
8... Valentine's day sugar cookies.
9... Walking on the treadmill for 10 minutes.
10... My Russian friendship tea on a cold night.
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Thursday, February 11, 2010

Baby Steps....

Just had to post some exciting news today... I was able to walk on the treadmill for 10 minutes and do some light weights.  I then proceeded to be "snappy" and "full of energy" with Chris as we went and grabbed a cup of coffee at Caribou.  We came home and I made lunch for us and frosted sugar cookies... there is a time that I couldn't of done a single ONE of those tasks in one day.

Its a joyous day when Chris is home, although he works non-stop, the comfort of having him in the house is great.

Thank you to all who have been praying for us and sending us "little acts of kindness" via e-mails, phone calls, and text messages.  It truly means a lot to have support.  I was in the worst mood EVER yesterday!  I think a lot of it was prednisone induced, but still... I warned Chris to look out.  Its funny how God works though, as I received a phone call from my best friends, Molly and Jess, and a call from my brother... all three of which always brighten my day.  I also received WONDERFUL e-mails from people from Gamma Phi, college, and high school that I haven't heard from in ages, that brought very encouraging words... It amazes me the kindness people are beginning to show towards me.  Its truly a blessing.

I was really skeptical about doing this blog and "broadcasting" my disease for everyone to know... in the end I'm so happy I decided to go through this "blogging" adventure.  It truly has helped me cope by typing things out and I can't wait  to reflect back on these words when I'm finally in "remission." 

I met up with my sorority sister, Trisha, on Monday... who I haven't seen for ages.  It was great re-connecting with her and she always has great words of encouragement.  She is someone that I have always admired as a "woman of God" and she leads her life by example.  Anyways, she sent me a great e-mail filled with words of encouragement and bible verses that have helped her in tough times.  I thought I would share one that hit into my heart... Thanks Trisha, you're awesome! :) 

‘Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.’ Isaiah 41:10

I don't think I can state it enough, but its these "little acts of kindness" that keep me moving.  I made a goal for myself today... by the time my mom's birthday rolls around I want to be able to walk 20 minutes on the treadmill!  It's because of these e-mails and phone calls I know I can do it!  Promise I won't let you down! :) 

Thanks for all the prayers and encouragement ya'll!  I have another lovely doctor appointment tomorrow... fingers crossed we go down on prednisone!!!!!!  I'll update you tomorrow! :)

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Tuesday, February 9, 2010

Unexpected acts of kindness!

I wanted to write about the "unexpected acts of kindness" Chris and I have experienced throughout this experience.  It has amazed me so much that the some of the greatest comfort I have experienced has come from places/people that I have least expected.  Of course, the people I knew I could count were there and have gone above and beyond.  But it has been a few that have stuck out in my mind that have truly surprised me by their continuous support.

Many of my mom's friends have been amazing.  I countlessly receive packages in the mail or cards of encouragement.  It has amazed me how much they have continued to support no only my mom, but me as well.  My mom was truly blessed with an amazing group of friends.  I hope that when I am at that age I can look around me and have the same "circle."

Another person that has continued to amaze me is my friend Marie.  Marie is the wife to Chris' fraternity brother.  We went to college together and although we were not in the same sorority, we still hung out due to being over at the fraternity house.  I would definately consider us friends.  We always had fun hanging out at the Bali Satay house, while our boyfriends pretended to be "rock stars."  But all of us girlfriends of the ATO house had fun together. 

Marie is one of those people that is exceptionally beautiful inside and out.  She has amazed me this past year and a half, like clockwork she regulary calls me every few weeks to check in.  Her goofiness and positive attitude are always welcomed and brighten my day.  Although Marie lives in Chicago, is a recent newlywed, teacher and now starting to get her masters... she still finds time to call.  Her dedication to our friendship and continued support have amazed.  I'm sure she'll probably read this and think "oh its not that big of a deal" but it trully is.  You would be amazed at how many people "forget to call" or "oh, i'll check in later" mentality.  Chris and I have family members and close friends that we have not talked to in over a month or longer.

So that is why Marie is my unexpected "act of kindness."  I hope that sometime I can return the favor to someone in need and lead by her amazing example!  Thanks Marie...  you're truly an amazing person!

Picture of Marie and I in college

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Monday, February 8, 2010

Highlight of my day...

Well... my day consisted of going to the pulmonologist (i.e.) the lung doctor.  Although this appointment is fairy harmless, for some reason I absolutely hate going to it.  So, luckily, Chris was able to come with me.  We ventured out in the Minnesota snowstorm to my doctor's office in Edina... about 45 minutes away.

All in all the appointment is harmless, it usually consists of a lot of waiting and answering questions... updating my prescription history is what takes the majority of the time.

They then take me to another room to test my pulmonary function. I absolutely hate this. It doesn't hurt, but I get anxiety from it due to the fact that I know my health "status" depends on it. If you have ever watched the show, "The Little Couple" on TLC... the test where Jen gets in the glass cage is a pulmonary function test. A lung function test evaluates how well your lungs work. The tests determine how much air your lungs can hold, how quickly you can move air in a nd out of your lungs, and how well your lungs put oxygen into and remove carbon dioxide from your blood. The tests measure the severity of lung proglems and check to see how well treatment for a lung disease is working.

The dreaded pulmonary function test...

I won't bore you with all of the details, but unfortunately for some reason my pulmonary function was at its lowest that it has ever been... which is weird, as I have been feeling a lot better.  I'm still having the coughs and such, but I have been feeling much better.  Although this news was very frustrating, my doctor isn't sure that its a true sign on whether or not my disease is still hurting my lungs... she is wondering if its a fluke.  So I get to go back in a month and do the whole procedure again.  Hopefully, the breathing function will be up... quite confusing.  The doctor is sending me to get an echocardiogram and EKG... hopefully this turns out okay.  My heart rate has been very high, which is most likely due to the prednisone and the fact that I can't exercise.  I'm fortunate to have very cautious doctors, which is very good with my condition.  After the echocardiogram, I will officially have every organ looked at in the past 2 months, except my brain, via some medical procedure.

Another thing I get to do is a "neti" pot... when the doctor told me this alls I could think about is the episode in The Office where Jim is Pam's secret santa and gets her a tea pot... but then Michael decides to do "Yankee Swap" and Dwight ends up with the tea pot... and shows Jim how he is going to "clear" out his sinuses with it... I believe when I do this I will have to blog... we'll see.

Anyways... highlight of my day... coming home to find the cat relaxing on the couch... had to take a picture.  The joys of being a cat... I always wonder what is going on in his mind!

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Friday, February 5, 2010

Really... only 5 minutes!?!?!

Okay... so today I conquered a huge milestone in regards to my disease.  I went to the gym!  GASP!  Most people know me as the "track runner" from high school.  I have always been athletic... when I was younger it wasn't uncommon for me to be juggeling 4-5 sports at a time.  I love competition.  The sport I was naturally gifted in was track... sprinting.  But whether your a sprinter or a distance runner, we all enjoy going out and jogging a nice mile.  Even if I was really out of shape, it was never to hard.  This brings me to my lovely relization that I had today.

I have been having some fairly good days.  I can feel my energy level is up and the muscle soreness is at an all time best.  With that in mind, I talked Chris in to taking me to the gym.  I figured, a little exercise will only be good for my lungs and I'm desperate to start losing this extra prednisone weight.  I have not been able to do any physical activity in over a year in a half, so the "happy endorphines" were looking good.

Needless to say I decided to do 10 minutes on the ellipitical.  That seemed like nothing to me (in my head).  The physical therapist recommended the elliptical for me and I was going to do just that.  Well... lets just say that by the time I hit minute 2 I could feel my lungs burning and I could barely feel my knees.  I know we all hit that "i'm really tired but I could push it just a little bit more" stage, but I literally hit minute 5 and thought "if I don't stop i'm either going to collapse from muscle fatigue or hyperventalate."  My lungs were on fire.  As you can imagine, it was a very frustrating situation.  I came home and was bummed.  I knew recovery was going to be tough, but it goes back to that whole "denial" stage... you don't realize how bad things are until you experience some stuff.

Well I've been bumming all night, I finally am shaking it as we enter the early hours of Friday morning and of course my husband is asleep in the other room, so I am trying to make myself fall asleep by researching the internet on my disease and other fun blogs... I came across someone's blog who was talking about what they're thankful for.  I figured what better time than to start listing every Friday ten things that I am thankful.  At a time in my life, when it is so easy to focus on the negative things, what better way to glorify Him and focus on what He has given me.  So at 1 am... this is what I'm currently thankful for...

1... The love my husband shows for me daily.
2... Daily phone conversations with my mom... even if they are only for a minute to say "hi" and "i'm thinking of you".
3... The smell of coffee shops in the morning.
4... The feeling of my orange and white tabby cat cuddling with my feet.
5... Checking the mailbox.
6... Hearing my Dad say... "Magoo"
7... The sound of my niece's laughs through the phone.
8... The beep of my cell phone when I get a text message.
9... Colorful, fuzzy fleece socks.
10... My heating pad at 5 am

Picture of Chris and I on our first vacation
together in the Cayman Islands. 
Thankful for GOOD memories like this!

Give thanks in all circumstances...
1 Thessalonians 5:18 

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Wednesday, February 3, 2010

A beautiful life... Is a life of the spirit

One of the things that I have struggled with extremely is the fact that due to prednisone I have gained around 40 pounds.  Prednisone also causes you to have a "moon" face... so needless to say my face is HUGE.  Most people who haven't seen me in a year, probably wouldn't recognize me. 

My adorable husband goes out of his way to tell me that I'm beautiful everday, which means so much to me.  It's really hard to wake up everyday and look in the mirror and not recognize your self.  This is something that I have been struggling a lot with the past month... on the positive side the fact that I'm beginning to care what I look like shows that I'm starting to  feel better.

This past week, Chris was in New York for business, luckily my mom was able to come up and be with me for a few days.  I was by myself this weekend though, which gave me a lot of time to think.  If you're ever on prednisone, this is actually not a good thing!  Anyways, I was feeling kind of blue on Sunday... I'm just not comfortable in anything that I wear and was getting frustrated.  I decided to sit down and read my daily devotional that my mom gave me for Christmas.  It's amazing how God comforts us and helps us.

The chapter for that day was "A Beautiful Life... Is a life of the spirit."  The bible verse was from I Peter 3:4, "Your beauty should come from within you- the beauty... that will never be destroyed and is very precious to God."  Amazing how that was the passage chosen for that day.  After I sat there with my cup of coffee and read the devotional, I was able to look up and look myself straight in the mirror.  I reminded myself, that "hey, my face will go down soon" and really truly, is how I act and treat others and rather than focusing on what I look like, I should focus on how I act.  I have challenged myself now to focus on my "inner beauty" and relationship with God, rather than my outer beauty.  I must trust that God will work within my heat and transform my life into something beautiful and know that whatever happens it is His will.

Amazing how God finds ways to comfort you... even when you least expect it.

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Rituxan... and many other drugs.

In October 2009, I started my first Rituxan therapy.  Rituxan is a drug given through an IV in two treatments, each consisting of 6 hours.  It looks like this drug is working well for me with the combination of 3,000 mg. of Cellcept.  We're not sure how many treatments I will get a year, but you do have to have them 4 months apart at the earliest.  My doctor's appointment we should know more about this.  I thought I would post some information on the drug, as well as the other drugs I am currently taking... more or less for my own personal record.

Rituxan:  is a cancer medication that interferes with the growth of cancer cells and slows their growth and spread in the body.  Rituxan is used in combination with other cancer medicines to treat non-Hodgkin's lymphoma.  It is also used in combination with other immunsuppressants to treat RA.
Rituxan targets a specific protein called CD20 located on the surface of B-cells.  Rituxan is believed tow ork with the body's immune system to eliminate the CD20-positive, cancerous B-cells.  It doesn't target cells that develop into B-cells or those that produce antibodies.
  Side effects:  chest pain, trouple breathing, numbness, fever, chills, body aches, easy bruising, skin rash, stomach pain, nausea, headache, muscle or joint pain, night sweats, swelling in hands or feet.
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Any person coping with Antisynthetase Syndrome, I would highly recommend talking to your talking Doctor about Rituxan.  It was pretty harmless and the only side effects I had were fatigue and some headach pain.  It seems it might be one of the final piece in this crazy jigsaw puzzle.

I am currently taking 2 20 mg. tablets daily of prilosec (helps with heartburn), 6 500 mg. tablets of Cellcelpt (immunesuppressant), 9 Ibuprofen, 2 Aleve PM, 1 Tramadol (pain medicine), 1 Bactrium tablet (helps prevent lung infection while I am on steroids), 1 Vitamin D tablet, 2 20 mg. tablets of prednisone... total 24 pills a day... gasp!  I know, but in the scheme of things, last January I was taking close to 40 pills a day due to infections I was dealing with.  I recently had to purchase a new pill case... yes I have an "old person" pill case.  I would highly recommend it though.  It seperates AM from PM and you can pull apart each day.  I found it at Target.  It definately simplifies things if you have to take a lot of pills.  Plus, it's fun colors that are bright... I was pretty excited when I found it!  Its the little things in life that count! :)

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