Wednesday, September 25, 2013

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 if you would like to do so.  Health and happiness... Maggie

Monday, May 7, 2012

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.

Monday, February 13, 2012

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!

Monday, October 31, 2011

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!

Tuesday, October 4, 2011

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... :)

Tuesday, September 27, 2011

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

Friday, September 23, 2011

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...
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