Thankful for Netflixs

So... real quick update.  I had my first round of the Rituxin infusion on Tuesday.  It started at 6:30 am, although earlier than previous ones, I liked this time as it got me in and out quicker since not too many people chose that time.  This was the quickest infusion at only 5 hours.  Something I can handle.  I watched two movies, and made small talk with a lovely lady sitting next to me.

I'm thankful that Chris took this whole week off.  He had Spring Break from classes, so we decided to take some you and me time... MUCH NEEDED.  We've watched movies, gone out to dinner, etc.  Its been great.

I'm feeling fairly decent after my infusion, although I was EXTREMELY tired.  I got a little sick that night, nausea, etc. but today I feel fairly good.

I'm thankful that my next round of infusion is in two weeks, and actually my mom is coming up for that one to give Chris a little bit of a break.  I haven't seen my mom since Christmas... mother/daughter time is much needed.

Spring is finally starting here in Minnesota.  Its been in the upper 40's/50's this week.  My joints are thankful! :)  The snow is slowly melting... hopefully in a few weeks it'll be comepletely gone!

My entire family is in Charelston right now, jealous they have 70's and its suppose to get up into the 80's!  Here's hoping Spring comes quickly.  Although, I will admit I'm already to migrat South, and I think Chris is officially on-board as well.  Two more years of school, and who knows what'll happen! :)

Hope the sun is shining in your household.

Warmly,

Greatful for Friends

Based on my previous posts, you can see that I was in a little bit of a "funk."  Rest assured, I'm doing a little better.  I still have all the feelings previously posted, but I'm REALLY TRYING REALLY hard to focus on the positive! :)

I'm so grateful for friends and family.  It's honestly what helps me get by from day to day.  Whether its waking up to a text message from my dear friend Heather Dunman or venturing out to Prior Lake last night to celebrate one of Chris' dear friend's birthday.  It helps to hear others laughter, and I find my self joining in and GENUINELY enjoying life.

So THANK YOU to Heather Prins, AJ Prins, Jake Weisberg, Matt Hermann, and crew for an amazing evening!  I was in a PURE FUNK and you all allowed me to smile and enjoy a wonderful evening with good food and amazing friends! I'm grateful Chris is friends with you all, which has allowed me to become friends with all of you!

Old school pics are in order! :) haha

I think this was at Gamma Phi Formal... Chris, me, Heather and AJ



Some of the guys at our wedding! :)

Chris and AJ (he was Chris' best man)--> Happy Birthday! :)

Dear God...

Dear God,

I sit hear talking to you tonight with a heavy heart.  My hands hurt, my eyelids have the rashes forming, and every time I look in the mirror I'm reminded of what I've been through, of what I've put my husband and family through.

Will my face ever go back to normal?  Will the scars that were formed from the steroids ever diminish from my stomach?  Will I ever feel healthy again?  Not so tired all the time?  Will I ever be able to look at myself in the mirror again and actually like what I see?

I pray I find the inner strength to continue the fight and journey that I am on, but after two and a half years of fighting, I'm tired.  I know the infusion helps me, make me feel better.  I know I need it to keep on living, but I just don't want to do it.  It's exhausting to think that I have to do them every 5 months now.  I don't want to be "sick" anymore.

Everyone tells me to keep looking back at where I was, but its so hard.  The finish line seems so far away.  I know there is some plan, some lesson and that I have no control.  But its so hard to let go and realize you have a plan for me.

Everyone my age is looking at trips to plan, looking at career moves or starting families.  It's so hard to think of the future, as I don't know what that is going to be.  Will we have kids, or will Chris and I end up that old couple where their animals are their kids?  Will we stay in Minnesota or move south to warmer weather?  So many questions, with no answers anywhere in sight.

I pray for strength and peace and for the courage to let all "decision making" and "plans" be guided by you.  I pray my heart can "lighten" a little bit and allow me to focus on the little things in life that are enjoyable, rather than focusing on the "bigger picture" that is oh so scary.

I finally ask, for friends and family to pray for me as I soul search through this time to figure out what life is going to be like. 

Amen.  Good night.

Thankful for Sunshine

"Oh Happy Day" has been in my head all day.  I'm so thankful that there was WARM sunshine pouring through our windows today.  LOVE LOVE LOVE.  It made the day so much nicer!  Since it's March 1st, I feel that Spring is in sight!  I want to say GOOD BYE to snow and freezing cold weather for another year... here is hoping that we actually get a Spring up here!

Things have been fairly well on the health front.  I still have my occasional down times, or sore moments each day, but I have made a conscious effort to keep our house clean the past few weeks, and what do you know, I have actually succeeded.  My mother would be so proud that I have continued making my bed!

March is a great month, but a little hectic on the health front.  In two weeks I met with a urologist, have my first infusion, then I meet with Dr. Fontana the next week and follow the month out with my last infusion.  I'm looking forward to having all of them done, but luckily April and May I get a little break from the appointments and just have one or two.

I keep trying to focus on the positives.  Chris has "Spring Break" in a week and a half and he is taking the WHOLE week off from work, then my friend Jess is coming up during that week for the night!  So pumped.  I round out March with my mom coming up for my second infusion (pssst... I haven't seen her in over 3 months, the longest I have EVER gone and it'll NEVER happen again :)) and finally the second weekend in April is Marisa's baby shower that we're hosting for her.  MANY MANY wonderful blessings and positive things!

So yes... here is my positive, happy blog!  Oh... did I mention I got PEEPS and I think this sparked the whole HAPPINESS! :)  I LOVE Easter candy and YES it can fit into my diet! :)

Hopefully everyone is gearing up for Spring!

What to do on a snowy, miserable day

Actually usually like snow... well at least I use to.  Don't get me wrong I love the first snow fall, and snow flurries on Christmas.  But this winter in Minnesota has made me become anti-snow.  Partly because every time it snows, my muscles hurt like none other.  Plus, an additional sting is that my youngest niece turned 2 and had her party this weekend in Atlanta.  My mom just HAD to call and say that it was 70' and they were grilling outside.  A move down south is looking more yummy by the minute.  No more shovels please! :)

So... while I sat miserably drinking a cup of coffee, looking out the window at the 17+ in. that fell, my psycho, but ADORABLE kitty wanted attention.  No, there is nothing under the blanket, but notice how he picks it up with his teeth like a dog???

Feeling BLUE

So, Chris and I have lived in our wonderful house a little over 2 years, but haven't done too much to it to make it our own.  So that was our 2011 new year's resolution.  We had put much of our focus on the 1st floor and the least amount of focus on our bedroom.  We decided to pick up our paint brushes and paint our bathroom a fun blue color.  We LOVE Martha Stewart paint and we had some left over from Chris painting his study on the first floor... It totally transformed our bathroom.  I also found brown paisley curtains on clearance at Target.  Two panels are in our bedroom but the third panel I used iron on hem to make a short curtain.  We never open the blinds, so i wasn't too worried about the backing.  I think it turned out nice???  Thoughts???

Now... my next project is to paint the upstairs guest bathroom... the color is still TBD.

It was fun for Chris and I to do a project together.  We had a lot of fun talking.  He loves and is REALLY good at painting, while I actually love to tape.  We made a great team! :)

One BIG Question Mark

So, since its really cold here in Minnesota and going outside makes me feel worse, I have had a lot of time to be stuck in the four walls, also known has my house. Its become somewhat depressing. I try to do little things to cheer myself up, but with the cold weather, comes the achy muscles and its hard to do TOO much. Which leads me to this post. I've had a lot of time to think. Think about the big question mark known as my life. Which has lead to me thinking about what life was like before I got sick...

I think back to over three years ago. I was working as a catering manager for a hotel... I absolutely LOVED the people I worked with. I loved parts of my job and didn't like some. It was my first job, that I started two weeks after graduating college. I learned I loved social catering, manly I loved working with weddings. I'd always thought/dreamed of being a wedding planner, but didn't know if once I got into it I wouldn't like it. I was actually wanting to do MORE with the weddings. I had a fun office, where the majority of people I really enjoyed seeing every day.

I was planning my wedding to Chris, and thinking of the future. We were looking into buying a house and making plans. I'm a big planner. We had our plan figured out... kids, work goals, etc. All of plans have been completely thrown out the door. Our future is one big question mark. So a planner has become a "I need to just seize the moment." I went from living with 60 girls in college (i.e. sorority), to living by myself but working everyday with females, to hanging with a cat the majority of the day... ALL DAY. It amazes me how different my life has become... how sedentary.

Its hard to think about what life will be like in a year or two. Technically right now, I am normal per my blood levels. Why do I not feel normal? Why do I still feel so unhealthy and sick?  I know I'm milestones compared to last year or even the year before that, but my blood levels weren't even close to normal. The big question mark I keep thinking is... is this going to get any better, or is this how I'm going to feel the rest of my life??? A lot of people have asked what I do all day and what my "normal" feeling is. So, I thought I might as well lay it out.

How I feel every day? Well, I wake up, after needing at least 12 hours of sleep. I usually have a hard time walking, as my muscles are super stiff and painful. The first thing I do is take pain medicine. I then bundle up, as usually its cold and my fingers/toes start to turn blue from the raynauds. I then go eat a bowl of cheerios and yogurt for breakfast/lunch as by the time I get up its usually around noon. I tend to watch tv for 2 hours or so as it takes that long for my muscles to start relaxing, stretching. Depending on the day I might have some coughing fits, or upset stomachs from all of the medicine I take. I usually then try to get at least something done, whether that's one load of laundry or the dishes. Something little everyday at least helps keep our house away from total mayhem. Then I usually curl up, if its sunny, in our front guest bedroom with Hannity and read a book. This is my view... not too bad. I'm lucky my kitty acts as my own personal heating pad.

Some days I'm more energetic than others, a lot of it depends on the cold. I try to work on craft projects and I do talk to my mom at least once a day. I spread out my phone conversations with friends, so I talk to a friend at least once of week, it usually brings a smile to my face. Although I will admit a friend on the phone, doesn't substitute having a friend near by. But, I get by.

24/7 it hurts to walk, hurts to move my hands, feels like my throat is closing and it burns to breathe. I know technically the numbers say I'm better, but when I first got sick I thought better would be back to my normal, hyper self. Now, I'm realizing, better is not having a temperature and able to walk decent.

I'm not trying to throw a pity party. Its something I'm actually coming to terms with. But so many people have said to me lately, well now you're healthy. I don't think the word healthy will be able to describe me ever again. Am I better than I was a year ago? You betcha. But I still live in that bubble, the bubble that I know at any moment I could get really sick, or my medicine could wear off. The littlest cold can put me down for the count for a week or more.  I won't even go into the more depressing scenarios.

I know the quote tell God your plans and make him laugh, or something like that. But, what if you feel like you have no plans, no direction??? Its something I've been pondering.  I think its frustrating as well, as I don't really have anyone in my life going through the same thing.  Chris gets it, but thats because he's right along there with me.  Hopefully the warm, Spring weather will bring some resolutions to my thoughts.

On a lighter note, Chris and I were able to enjoy a Valentine's dinner on Saturday and then Chris had to study Monday night, so I just cooked a home cooked meal. Here are my two valentines :) Yes, my kitty did try to get into the envelope, and yes I realize it is the little things in life that make me get by.