Her Diamonds, Her Life

Lack of updates

2013-09-25T23:55:00.000-05:00

I used this blog as an outlet to cope with my disease and to have a place to vent. If you haven't noticed, I have decided to no longer blog and deal with issues and my disease on a more personal level. I would still love to connect with people that have been diagnosed with antisynthetase syndrome. Please email me at maggie.hatch@gmail.com if you would like to do so. Health and happiness... Maggie

What's next?

2012-05-07T01:26:00.001-05:00

I keep asking that question to myself. What is next for me. So far, I haven't come up with an answer. I've been doing great and exercising about 6 times weekly. I've even lost about 7 pounds, but with much hard work and restraint in the dietary department. That prednisone sure did mess with my body and metabolism.

Although I'm doing great, I still have my moments every day where I ache or become completely exhausted. I know it is not realistic for me to hold a job every again. I do occupy my time very well, considering I'm by myself all day and 2-3 nights a week. Although I keep busy, I still find myself becoming very lonely.

I moved to Minnesota five years ago, not knowing anyone except for a few acquaintances. The first year I lived here I was so busy with work and planning our wedding that I didn't have much time to focus on friendships. I was also working and met some really nice people there.

That winter, Chris and I moved into our neighborhood and I started to become extremely ill. Needless to say that past few years haven't been focused on making friendships. We have great neighbors, but all of which are older than us with at least two kids. I find it hard to relate.

Not sure what to do. I've kept focusing on wanting to move. But that is just not an option for us currently. It is hard when the majority of my best friends are in the Des Moines area and that is only two hours away from my parents. Its hard being away from what I know. I moved a lot as a child and I have never had this much "home" withdrawals. I'm not sure how to change it either. At this age we seem to find our friends through work or our children. Neither is a current option.

I can't sleep, so this is my "food for thought" of the night. I apologize for the random ramble.

2011-2012 update

2012-02-13T16:39:00.000-06:00

I apologize for my lack of blog postings. But I have a really good reason... I've been feeling amazing!!! I've finally started to feel somewhat "normal." So, while I've been enjoying life to the fullest, I haven't thought about sitting at the computer to update all of you! So I apologize.

Things are well, I continue to lose a little weight here and there and my pulmonary function test is officially in the low 70's. Something I haven't seen since I first got sick over 3.5 years ago! I'm so fortunate to have the amazing medical team that I do. Whatever they are doing... its working. For the first time in 4 years, my husband and I are making plans, checking those plans off the list one by one.

So... some amazing things have happened since my last blog post. The firs tone being I got to spend Thanksgiving with my amazing nieces and my grandparents in Virginia. Oh...and I didn't freak out about flying either. :) My grandfather (Dooda as we refer to him) turned 90.

Chris and I Thanksgiving Day

I always say nieces give the best hugs.

My beautiful grandmother (Mamom) 89 years old.

Keegan and I playing

Laughter with my lil Mia

Brant (my brother), Kelly (my sister-in-law), Me, Chris, Keegan, Mom, Dad and Mia

Us "kids" with my grandparents

An arrival came early for Christmas as well for our family. Introducing our nephew, Parker Samuel Allen. Born December 21st.

He looks just like his daddy and older sister Keegan

Great big sisters!!!! :)

Can't wait to meet him in March.

Christmas was spent in MN, and my parents came. Which was great as I had infusions fall right around them and those still make me tired!

Other than that... I've been doing some house projects and attempting to exercise daily. I still have my struggles and the aches and pains are a daily occurrence, but I'm so grateful to be somewhat "healthy."

Promise to not go so long between blog posts! But in the case of me and how I've worked this blog... no news is usually good news! :) Cheers!

Georgia on my mind

2011-10-31T14:43:00.003-05:00

This is what I have been up too...

I just got back from driving to Atlanta with my mom for a week. It was wonderful to spend some quality time with my beautiful nieces! Mia is officially out of her crib to make room for our nephew that is due in January! Keegan received my old "little" girl furniture. My mom and I put the furniture together and rearranged.

More pics to come later. But thought I'd let everyone know that I am doing great and the reason for the lack of blogging is due to the fact that I have been happily busy and productive! :)

Hope everyone has a wonderful Halloween!

Say a little prayer

2011-10-04T22:06:00.002-05:00

Hi everyone! Asking for a few prayers... I just haven't been feeling that great! I have been tired since Thursday. Literally slept 18 hours between Saturday afternoon to Sunday afternoon. Praying its just a low iron count, but I just can't seem to shake the "not feeling well" feeling. I also starting getting some bruises on my shines and my dermatoymyositis appeared on my eyelids. Praying it's just one of those weeks and not a start of a relapse of some sort.

This is my favorite time of the year and its a bummer that I'm not able to enjoy it to the fullest. Hoping to shake it soon so I can go looking for pumpkins... :)

A little of this and a little of that...

2011-09-27T13:36:00.001-05:00

Quick little update... its become Fall in Minnesota. Which is my favorite time of the year. But with the colder weather, comes the more achy, stiff muscles and the coughing... oh how I hate the coughing. But considering how bad all of this can be... I can't complain too much.

Officially... I have started to get a little bored. It has taken 3 years. But I finally feel like I might be able to handle a part time job of some sorts... we'll see. I first want to get through this winter to see how I feel, as the winter months are the worse for me physically. Fingers crossed everything works out and maybe I'll find a little something to keep me entertained.

Chris is SUPER busy with school and work... so proud of him, but can't really remember the last time I relaxed with him. Seems as if we're going a mile a minute these days. I'm finding ways to entertain myself though. I've taken up sewing and am currently constructing a baby gift... pics to come later as I don't want to post before the shower :)

Also working on Halloween wreath and with Chris out of town this week I might just have to decorate before October 1st... we'll see! :)

Chris and I were fortunate to have one of my best friend's Liz and her husband come this weekend for a visit. So I got to cook a meal and entertain, which I love. Plus the company was amazing. I really wish Liz and I lived next door to each other... she's that friend that no matter what I will always need in my life. We just get each other. She's the one friend that I haven't had to explain too much too about my disease, as she just gets it and knows the right thing to say. She has allowed me to be sad with her, get mad with her, and laugh about some of this as well. Not sure what I would do without her. Although I didn't look like me or feel like me, she was always able to pull the old me out. But allowing me to be frustrated and not judge. Its hard to come by friends that can help accomplish all of that... I'm fortunate and that I have had a few!

Anyways... not too much going on in this lane. My blood tests have been normal for almost a year come this November and I got see the doctors in October. I'm on 4 months visits and 2 month blood tests routine... considering I use to be every month... I'm ecstatic! :)

Keegan and Mia are doing amazing. I get to see them in October! Mia is obsessed with the Wizard of Oz... which was my favorite as a child. Yesterday they had Wizard of Oz day at dance class. Thought I'd share the two pics I got that warmed my heart...

Keegan Lee (Kiki) 4 years old

Mia Reece (2.5 years old)

Hope everyone is feeling good, or better and enjoying the fall weather. Fingers crossed we don't get snow in October this year! :)

Warmly... Maggie

Heavy Heart

2011-09-23T16:12:00.003-05:00

The autoimmune community is a small one, although it seems to be getting bigger. Most people don't talk about their disease unless its severe or they don't even realize that what they are experiencing is an autoimmune disease.

For the past few years, this blog and technology and given me a gateway to connect with people all over the world who either have my disease, or another autoimmune disease. We all tend to experience the same things, some worse than others.

There is one person that I have always found comfort in. Although, I've never met, her blog has brought me great comfort the past 3 years. She has one of the most amazing outlooks on life and her faith is one of the most memorable things about her. She writes so beautifully and truly can put into words what she is going through, without making you feel sorry for her.

For awhile there, I felt a lot of parallels between Sara and I. We were both basically house bond... her with her dog, me with my cat. The doctors weren't really figuring out how to help either of us. Dealing with BIG QUESTION MARKS, I always fond comfort in her blogs, as she handled her situation with such grace and strength. She didn't complain or feel sorry for herself. Her blog gave me great strength, when I was at my lowest point and felt like no one would ever understand what I am going through... but Sara did.

The difference is now I was able to find a treatment that worked for me and a few answers regarding me disease. Unfortunately, Sara did not. Her body is slowly shutting down, and hospice care came this week... she is surrounded by,although I've never met them, what seems to be one of th emost amazing families. I grieve in my heart for this fact, but I rejoice knowing that she will soon be with our creator and her body will feel no more pain.

I felt the need to write this blog, as whether you are struggling with an illness or even your faith... Sara's blog is one of the most inspirational things that I have come across. She is a true inspiration for anyone. I will truly miss her inspriation, but her blog is the type of blog you can easily go back and re-read many times and learn/grow over and over.

Please say prayers for Sarah and her family...

I love my mom

2011-09-16T15:54:00.001-05:00

My mom has always been one of my top supporters and best friends. I can honestly say that I can share anything with her and she usually one of two people that I go to for advice... her and my husband are the two people I can honestly not live without.

We always have so much fun together... so I was so happy when she came up this entire week and we just got to play. It has been over 3 years since she has come up and there hasn't been a medical appt. thrown in there or me being extremely sick.

We shopped Monday-Thursday and I helped her sew my nieces Halloween costumes. So to everyone who is worried that you'll never see a normal life again... I'm living proof that you can get back to enjoying each day. Oh yes I still have aches and pains, and sometimes get tired and I have to watch it. But let me tell you... I had a blast with my mom and I went shopping for the first time in 3 years... and enjoyed it.

Weight wise I'm still not back to normal, but I'm okay with that because I know it will come off eventually. But... I can honestly say that I'm getting my bounce back in my step... which is perfect as it is just in time for my favorite time of the year... FALL.

Whether you are struggling today or feeling good... I hope everyone remembers to enjoy the little things in life. That goes for the non-sickies as well. A year ago I was focusing on that fact that I could do a whole load of laundry from start to finish in one day... now I'm shopping for 6 hours. The little steps, turn into big steps and always have hope that you'll reach those big steps. A positive attitude is key... that is something that I learned from my mom. :)

Craziness with a whole lotta happiness

2011-09-02T13:27:00.000-05:00

Sorry for the lack of posts, but life has been a little hectic lately. My dear friend, Molly, just got married last weekend so I have been gearing up for that the month of August. It was a wonderful wedding and I was so honored to be a part of it. Needless to say, I handle my anxiety perfectly and danced the night away. As my Dad said, this is good for you Mags. It gets you out there being"you" again. I had a lot of fun, and I was so happy I was able to enjoy the entire weekend. I did come home Sunday afternoon and sleep 16 hours straight though! Pretty sore and tired for about 2-3 days but it was all worth it and I have recovered quite nicely! :)

Me and my father... Love him! Prayers for him... he is on his way to India for a mission trip of sorts tomorrow helping woman there to increase their agriculture production! :)

Chris and I... fresh off his fly fishing trip to Montana with my Dad and brother and his 28th birthday! :)

My mom and I... my best friend! I couldn't of gotten through emotionally/physically if it wasn't for her! :) Always and forever my number one cheerleader! :)

Best friends since 5th grade... So happy she found Neil and I was able to be a part of it! :)

The happy couple... Mr. and Mrs. Neil Mulholland! :)

One of my best friend's husbands, Ryan, took the wedding pictures. Can't wait to see what he was able to capture on the wonderful day! The weather was perfect! :)

So... besides the wedding, our house got struck by lightning in July... so we have been without our main computer/wireless. SO I am writing this on my OLD college laptop. I will admit that I never realized how much Chris and I relied on technology. Also... we now have a wonderful technology graveyard! I won't even begin to tell you how much that little lightning has cost us. But hey... it could be worse!

So now that Molly's wedding is over I'm looking forward to my favorite time of the year... FALL/HALLOWEEN! My mom is coming up in a week to have a Mom/Daughter week.... she hasn't been here since April and it'll be the first time in 3 years that she'll be here without any medical interferences! woo hoo

So... I have sat and reflected this week while I re-cooperate. Its hard for to think that 3 years ago this week I was diagnosed with my disease. Two years ago this past weekend, ones when I hit my low point. I could barely walk, coughing none stop and had a temperature of 103. That's when I had to go to the hospital. That is the lowest I have ever felt, as morbid as this is I never thought I would live to see the day that my dear friend Molly got married. So... Molly's wedding was a triumph of sorts for me against my disease. God has been good to me and has allowed me to start to lead a "semi normal life." Slowly, he is starting to show me why he chose me to handle this. Figuring out life and my purpose one day at a time can be quite joyful. Well... enough rambling.

OH... I almost forgot. Happy Allen news... Brant and Kelly are having a boy! Parker Samuel Allen is due in January! :) Finally that girly family get a dose of testosterone.

Hope everyone enjoys their Labor Day! Warmly...

3 Years and Counting

2011-07-09T17:25:00.000-05:00

Picture of us after our Anniversary dinner...

So Chris and I celebrated our 3 year anniversary on June 28th... with that we also celebrated on June 30th of 3 years since I've been sick. I can officially say that this was the first time we have had a semi-healthy anniversary. We are finally on our track to figuring out a normal routine. Last week I was even able to organize our entire kitchen... i.e. the pantry and my spice cabinet. So better now! :)

For the most part I've been feeling fairly good, although I do wake up with swollen joints and tenderness due to the humidity, but I find it easier to deal with than when its really cold, so I'll take the humidity any day. I met with my doctor and its hard to believe that its already time for another infusion. We're still working out the "kinks" in the timing. So we're going to try 4 1/2 months. The earliest I can get my infusion is 4 months. I'm hoping to not have to do that but we'll see.

So I have infusions starting in a week. As of this past week, I can start to feel the fatigue coming on a little bit at a time and my dermatoymyositis started to show itself a little bit in the form on my eyelids getting pink. So although I'm not looking forward to my infusion... I think its coming at a good time.

I'm going to Iowa next week and I'm REALLY looking forward to spending some quality time with my mom. I will also be able to see my Dad for a night before he goes off on a business trip, which is great since I haven't seen him since April.

Chris is back at school and things are going really well. He seems to be really enjoying his classes. Hard to believe he already has a full year behind him. We stayed here for the fourth of July. It was nice to relax. We spent time with Chris' mom and then on the fourth we went to our friend's the Nelsons and grilled out. They just had a baby boy, so it was pretty low key.

Hard to believe its almost August. We are hanging in there. Although my disease doesn't have a "remission" status, it does have a "controlled" status. So things are looking better. I'm slowly starting to gain a little bit of confidence back as well as the prednisone weight is SLOWLY coming off. The good news is that my face is almost back to normal. :)

Live, Laugh, LOVE

2011-06-26T13:41:00.000-05:00

Chris and I just got back from a wedding in Des Moines. It was filled with a lot of laughter, a lot of fun, and A LOT OF LOVE! I was pumped to be able to dance the whole night and was so happy to enjoy this wonderful wedding. Although... it makes me miss a lot of college friends, etc. Here are a few pics! :) Cheers!

Betsy and I! :)

The wives of Alpha Tao Omega!

Adorable centerpieces... so simple and chic! :)

This was the groom's cake... he is obsessed with Shark Week! Too cute! :)

The beautiful bride and groom! :)

My hubby and I! :)

LOVED her dress! :)

Double dose of good news

2011-06-22T14:25:00.000-05:00

So I can continue my blog posts of really good news. First off, last week I went to the pulmonologist and my lung function test showed amazing improvement from February, and comparing it to last year it was amazing. Last June my pulmonary function was 42%. Which pretty much means that when I breathe I was only using 42% of my lungs. I was in then 40's all of 2010. I started to show some improvement in the Fall of 2010. In February my function went up to 50%... I'm even more happy to report that I have now officially hit 60%. I can honestly say that this is the first time I've thought I'm heading towards being able to live a semi-normal life.

It has been extremely refreshing these past few weeks, as our conversations in the Hatch household has been filled with talking about future trips we want to take and the possibility of starting a family in the next few years. It's such a relief to be a normal, boring married couple!!!

On Friday I go into see my rheumatologist... Looking forward to a good report and scheduling my next infusions for July/August. It's going to be a few busy months, but filled with a lot of good things.

So, the second bit of news is VERY exciting!!!!! Chris and I received a phone call a few weeks ago and I can happily, officially report it now. As most of you know I adore my brother, Brant and sister-in-law, Kelly. I adore them even more now that they have given me my adorable, beautiful nieces Keegan and Mia. Well, get ready as Baby Allen #3 is in the way!!!! I was told via a phone, but my parents were traveling down there to visit for Keegan's birthday and were given a picture frame with three picture slots... two filled with Keegs and Mia. The third had a note that read... Parker Samuel or Lily Ann??? This is when they figured out what was going on...

The funny, ironic aspect of it is the fact that the baby is due in January. The funny part is Mia was born in February, Kelly in March, Brant in April, and Keegan in May!!!! How funny is that...

Other positive news is I was able to make it to Cedar Falls for my dear friend, Molly's wedding shower. Here is a picture with me and my Mom...

Here is my friend Molly and me, her Matron of Honor! :) Can't wait for the wedding in August. Its going to be a lot of fun!

The joy of being able to finish something- start to finish

2011-05-26T16:18:00.000-05:00

It has been a long time since I have been able to accomplish a project from start to finish. I would either wear myself out, end of getting really sore, or not be able to physically finish it... i.e. painting our bathroom. I still officially cannot bend down on my knees.

Well I can honestly say that I accomplished my first DIY project in a long time. I took on putting up a kitchen back splash... which we desperately needed as the wall behind our sink was slowly getting destroyed. Chris helped towards the end with me with figuring out how to extend the light fixtures and as well as grouting. But other than that... a few Starbucks green teas, some music and I had a VERY productive week last week.

We also did some landscaping, while I'll admit that Chris did most of it, I did transplant all the plants and get all of our other plants ready for summer. Here are a few pics. Enjoy! :) I know I am.

Our new "royal" crab tree which I named Kate in honor of my obsession with Kate Middleton

The Spoon Theory written by Christine Miserandino

2011-05-25T20:05:00.000-05:00

The Spoon Theory written by Christine Miserandino Blogger Templates

Life is good...

2011-05-22T16:49:00.000-05:00

I just realized this afternoon that I have been totally MIA for about a month. WOW! While that is totally unacceptable, the reason is that I HAVE BEEN FEELING GREAT! My infusion kicked in towards the end of April and I have been going strong since.

This past week I was busy babysitting my mother-in-law's two kitties... along with our Mr. Kitty, it was quite an active household. Every where I turned there was a feline waiting and yearning for affection. It was quite interesting and made me realize that I never want to own three cats.

Anyways, I have been quite busy with projects around the house. The weather has been decent with average temperatures in the 60's. I have found that between the 40's and 50's my arthritis acts up a little bit along with rain and anything below 40's causes some pain. Above 50's and I have been feeling great. I even have been working out everyday and I can go up to 20 minutes on the elliptical. Considering I was at 2 minutes in January I think that's an accomplishment.

I'll fill ya'll in on our backyard landscaping project, the fact that I just completed an entire kitchen backsplash, oh and an awesome little thing regarding my amazing husband getting me my dream beach cruiser bike to take to the pool this summer.

SO anyways... Life is good because ONE I'm feeling GOOD and TWO, I got to see these two little ones a few weeks ago. We surprised my brother for his 30th birthday and flew down to Georgia for the weekend. We surprised the little ones as well! :) Can't believe how big they are getting. Here are some pictures for our weekend! :)

Chris, Brant (my brother) and My Dad at the Atlanta Aquarium

Keegan (Age 4) trying to teach me how to courtesy like Princess Kate

Keegan teaching me how to me "fancy" like Fancy Nancy

Loving my little Kiki

Loving my little Mia

The girls were brushing my hair and playing "rapunzel"

The four year old showcasing her new Rapunzel sunglasses

My brother with his birthday gift from us fellow Iowa Staters

Like I said... Life is GOOD!

Just what the doctor ordered

2011-04-21T12:13:00.000-05:00

Last weekend, Chris (my husband) had a bachelor party at Iowa State for a fraternity brother. So I had planned on being along all weekend, maybe watching some chic flicks, who knows. Well I did that Friday, but on Saturday, much to my surprise my two friends Heather and Liz were coming up from Des Moines. It had been awhile since I had seen them. Two other friends (we were all Gamma Phis at ISU together) that live in MN came over Saturday night to and we made a girls night of it.

It was so nice to just veg out on food, drinks (peeptinis), chat and catch up. We had a LOT to celebrate. Heather had just gotten engaged in January and Nicole earlier that week announced that she was pregnant. What wonderful blessings. So the night consisted of looking at ultrasounds and wedding stuff.

We didn't need anything else to make the weekend more memorable or fun, but much to our surprise Heather asked us all to be bridesmaids. Such an honor and I cannot wait to be apart of her and Brian's special day! You can see her blog post regarding the weekend here. The wedding party is going to be so much fun and Heather will be a BEAUTIFUL bride. Can't wait for May 2012~

Here are some pics Heather took from the weekend.

Me with my cupcake tree... Cookie dough cupcakes (yes please) :)

Nicole (+1), Trisha, Heather (the bride), Me, and Liz

Liz, Me, and Heather drinking our peeptinis

So... what a great weekend. Sunday night was topped off with Chris coming home and us catching up on our wonderful weekends. We then ended it by watching the Harry Potter 7th movie... have I mentioned I'm obsessed with Harry Potter???

So... great news from the weekend, but unfortunately I haven't be feeling the GREATEST. I haven't had any fevers but I've been sore and my fatigued then normal. Not too bad, but I have had a little trouble breathing and I've been coughing a lot. I had blood tests taken on Monday, so I plan on calling my doctor tomorrow. Prayers my disease didn't flare up more before the infusion started to kick in... if so, more prednisone :(. Trying to think positive, but I just haven't been feeling as great as I was the past month. We'll see and I'll keep you all updated... I think part of it is the weather... yes its snowed this week. I am not sure Spring will ever arrive in MN.

Well that's the update for now. Hope everyone has a blessed Easter.

A little bit of this and a little bit of that

2011-04-13T14:32:00.000-05:00

Life has been a little crazy lately. I realized last night that I haven't posted since my first infusion. Well rest assured, my second infusion went well. I did get a little touch of a lung infection afterwards though so I had to go on the "icky" antibiotic that makes me REALLY tired and nauseous.

My mom was up here for the second infusion, and then back up here for a baby shower that we threw for one of my childhood friends. Needless to say my life has been a little hectic preparing for that. Then this weekend Chris is going to Iowa for a bachelor party and I am having a girls weekend with some dear friends from Des Moines... Heather and Liz... I believe I have mentioned them one or twice before! :)

So lots of good things, but I haven't been feeling terrible, but not all that great either. My disease did start to show that it was becoming active again from my April blood tests. It looks like I'll probably have to do infusions every 4 or 4 1/2 months. Not fun, but I figure if it makes me feel good all the time that is a plus. With the change in temperature up here my arthritis has been acting up, and since my disease has become more active I've been coughing a lot and having a little harder time breathing. Am I flat of my back miserable... no but I've felt better. The infusion should start kicking in soon, so I'll be back to my "higher" energy self.

Hope everyone is enjoying their spring! :) Here are a few pics from what I worked on from the shower... I love crafts :)

Thankful for Netflixs

2011-03-17T18:38:00.000-05:00

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

2011-03-05T15:18:00.000-06:00

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...

2011-03-04T00:40:00.000-06:00

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

2011-03-02T01:13:00.000-06:00

"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

2011-02-22T15:59:00.000-06:00

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

2011-02-22T15:49:00.000-06:00

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

2011-02-18T01:17:00.001-06:00

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.

Bummer

2011-02-02T21:02:00.000-06:00

Had a little bit of a scare today. I'll start from the beginning. Monday night I went to bed with some tightness in my chest. I woke up Tuesday thinking I might of slept weird or strained something. The heaviness on my chest continued all through the night and I woke up with morning with it actually feeling a little worse. I started coughing a lot and new I need to call the pulmonologist. It might be nothing, but in my head I kept thinking this doesn't feel right.

After talking to the nurse, she told me to get my butt to the ER. So I called Chris, and luckily he has the most amazing boss and he came and got me. We were only in the ER for 2 hours, but they did a chest x-ray, gave me an IV, EKG, and etc. Turns out I have pneumonia. Not good with someone in my condition.

So, now I'm on REST and suppose to drink LOTS of fluids. They put me on an antibiotic with strict instructions, that if I get a fever, I need to high tail it to the ER. I have to follow up with my lung doctor on Tuesday. So my whole NO DOCTOR APPT. for the month of February... failed miserable and its only the 2nd.

So... trying to hanging in there but SUPER uncomfortable right now. Hope the antibiotic works its wonders ASAP!

The joys of having a frail immune system :( Luckily for me Chris is taking AMAZING care of me and with encouragement from my Mom, is in the blizzard, also known as Iowa. I'm hanging in there. But just to make sure, I think I shall watch a Harry Potter movie just to lift my spirits! I'll keep ya'll updated!