Lack of updates

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?

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

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

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

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...

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

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

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

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

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

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

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

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

The Spoon Theory written by Christine Miserandino Blogger Templates

Life is good...

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!