Friday, April 30, 2010


So I'm so excited it is Friday!  Unfortunately last night was not the best night... I had a touch of a slight fever and some chills.  We're not sure if this is due to lowering prednisone, the infusion, or if I'm battling an infection.  I have felt better as the day has gone on which is good and I'm looking forward to having Chris home in a few hours.

Last night was hard as I started to feel feverish again and my muscles hurt... its been a long time since I experienced those.  I started to cry with a washcloth over my face... not because I was in that much pain, but more due to frustration.  Can I ever get a break?  Its hard not to get frustrated as so many times I feel like I have 2 steps forward and then 4 steps back.  I'm hoping this is just a little bug and will pass soon, but in the back of my mind I keep think, what if this is my disease acting up due to the lowering of prednsione!  I try not to be negative, but when you've been sick for so long its hard not to be.  We're going to keep on moving though! :)

1... Becky's wedding this weekend and getting to see G-phis! :)  Plus, wedding cake is my fav.

2... Mom visits... they're the best and I have the best mom.
3... Falling to sleep with Chris... no more 2 am insomnia
4... Chris finished is grad application! :)
5... Watching movies while it rains
6... Starting a good book
7... Planting flowers... our front porch looks great with dark purple and yellow pansies.
8... New perfume my mom got me... Sarah Jessica Parker's NYC... it's yummy!
9... Finishing a project... finished Andrea's baby anouncements! :)
10... Starting a new project... wine cork pictures... we'll see! :)

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Thursday, April 29, 2010

If all else fails...

So... I had my infusion Monday morning... glad it is over and I won't have to have that lovely experience for another 6 months.  I am lucky enough to have an amazing mother that was able to come up this past weekend and go to the infusion with me.  It gave Chris a MUCH NEEDED break from the medical stuff.  The infusion went okay.  We arrived at 7:00 am and got in right away.  My heart rate stayed around 144 due to anxiety and I did have a low grade fever.  Some day I swear I will get use to them and enjoy "sitting" for 5-6 hours.  All in all after 2 hours I calmed down a little bit and was able to enjoy one of the ladies next to me... she was quite a hoot... it was her 90th birthday and let me tell you... she wanted to be there less than me!

So yeah... I then came home with my mom and slept for about 3 hours straight.  The next day I felt pretty good and my mom and I were able to go out and about for a little while and enjoy some shopping and errand running together.  She gave me a much needed positive break.

Unfortunately... I haven't been feeling all that great since yesterday... not sure if I'm fighting off an infection or just aftermaths of going down on prednisone and the infusion.  We're playing it by ear right now. 

So today... if all else fails... I curled up in my bed with my fluffy John Deere sweatshirt, kitty at the bottom of my feet and watched "Julie and Julia," one of my favorite movies.  Hey... it works as a pick me up until Chris comes home! :)

Not much else to say... just slowly moving along.  Hoping to feel better by tomorrow! 
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Friday, April 23, 2010

Toes in the water... ass in the sand...

I had to post this... nothing like hearing your almost 3 year old sing a song to you over the phone.  My sister-in-law Kelly just called and said Keegan learned a song and wanted to sing it to me... she then proceeded to sing "I got my toes in the water... ass in the sand," from the Zac Brown Band.  No joke... the girl picked it up from the radio... talk about too cute.  My favorite is still when she sings, "papa's deere," but Brant taught her that... this one she picked up on her own.  I can't wait to see what she comes up with next.  Also... Mia took her first step without holding onto anything... it amazes me how each day they get bigger and start experiencing new things.

Anyways... today my blood test results would of come in and LUCKILY NO PHONE CALL!  That means nothing alarming came in with my numbers and I continue down the progression of 15 mg. of prednisone!  I was really anxious this morning, everytime my phone rang I kept jumping to answer it.  Luckily, I met with my friend Marisa this morning for coffee at about 8:30 and we talked for awhile and she kept my mind off the phone.  Thankful for her conversation and the friendship we have formed as "couples."  Her husband and Chris are planning on golfing tomorrow... they are some of the nicest people I have ever met and I'm so glad that God has blessed us with their friendship.  No matter what... we always enjoy the company of Marisa and Shea.

Other than that... no fevers or anything in regards to the prednisone withdrawal.  I'm a little tired and have a headache so laying low is key today...

My heart is a little heavy this week regarding some recent events that I feel the need to share.I found out Monday that a sorority sister of mine, Katie Lunn, was killed in a car/train crash this past weekend.  I have only met Katie a couple of times, as when I joined Gamma Phi at Iowa State she had transferred to a college in Oklahoma.  Her older sister, Jessica, was a senior when I was a freshman.  The few times I met Katie she was extremely kind and full of life, my initial impression has been verified by the outpouring of people's response via facebook of Katie's death.  Katie was a dance instructor in Chicago and it amazes me at only the age of 26 how many young lives she has touched.  Its such a tragic thing when God takes away a life so young, especially due to something very preventable.  Katie's car was hit by an amtrack train in Chicago, due to the fact that the gates and lights were not working. 

Another death, was one of my dad's golfing partner's son died last week due to bacterial menigitis.  He was 3 weeks from graduating from Iowa State University and his family didn't even know he was sick.

I always try to find the good in everything, but in this situation it is very hard.  I ask you all to pray for her family and friends as they pay respects and honor her memory this weekend... I can not even imagine... it makes you realize how precious life is and to cherish the memories you make with family and friends.  I plan to make lots of memories today with my husband and friends... and to cherish them.  I challenge you to do the same.

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Wednesday, April 21, 2010

Don't stop believing....

Okay... so most people know that Journey's "Dont Stop Believing" is one of my all time favorite songs.  Well I had to laugh at myself as I sat at my Rheumatologists office today when that song came on in the back office very softly... but as an avid Journey fan I tend to tune into that melody from the first few notes!  Anyways... since I have come to this office at least ONCE EVERY month since September 2008... Everyone knows me... so I'm pretty calm regarding these appointments but today for some reason I was really anxious!  One question kept entering my mind... would I be able to go down on prednisone?

I have been on prednisone since September 2008 and I have been on 40 mg. and up continiously since July 2009... it has definately taken a toll on my body.  I have gained 50 pounds of fluid/weight, my face looks like a completely circle, and worst of all I've got straie all across my arms, legs and stomach... literally my stomach looks like a tiger attacked it.  So... you can see WHY I'm anxious to go down on prednisone.  Unfortunately, last time I went down I went down too fast and ended up getting to 7.5 mg. and couldn't walk and had to go all the way back up to 60 mg. of prednsione... so its an interesting process!

Anways... TOMORROW I GET TO GO DOWN TO 15 MG. OF PREDNISONE!!!! :)  I'm so excited... hopefully maybe my face will start to go downa  little bit!  I  know the next couple of days could be shaky, and I have another infusion on Monday, but the thought I almost having this NASTY drug out of me is so encouraging.

So... through this process Chris and I have kept a positive attitude and although a lot of the studies out there and information shown to us didn't show a great prognosis for my length of life, we figured with the fact that I'm young, a positive attitude, faith, and a doctor that is truly my advocate... we could get this disease under control and live a "semi" normal life!  So with that being said... My doctor told me one of the best things EVER.... she feels based on last months blood tests (example my CRP (c-reactive protein) which has been at 6-8 for a year when down to 2 last month... now normal is .5 but hey... we'll take it), and my joints that this is the best she has felt about my pronosis.  I'm on cloud nine... I'll be quite honest, I got really emotional when I told Chris this.  It seems that things are starting to go in the right direction and we have some news to be happy and positive about.  Tonight... we're celebrating with good friends, Marisa and Shea.  As my mom would say, "Life is Good."

Thank you again for the continuious support of prayer, e-mails, and phone calls.  We truly appreciate them.  It makes each day a little easier to conquer knowning we have a "team" rallying for us.

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Saturday, April 17, 2010

Some articles

So last night I couldn't sleep... I had a slight fever.  Found some articles regarding case studies and my disease... thought I would share.  Hope everyone is enjoying the nice weather!

Ten-Year Survival Poor in Antisynthetase Syndrome
BARCELONA — A review of 30 patients with antisynthetase syndrome found that only half survived 10 years after diagnosis, Dr. Oyvind Palm reported at the annual European Congress of Rheumatology.
This idiopathic inflammatory myopathy is characterized by the presence of antibodies directed against tRNA synthetase. The most common antibody is anti-Jo-1, which is found in 80% of cases.
Other antibodies sometimes found include anti-SSA, anti-PL-7, and anti-PL-12.
Clinical manifestations of the disease include interstitial lung disease, which can be severe, arthritis, Raynaud phenomenon, and the hyperkeratotic rash known as mechanic's hands, according to Dr. Palm of the department of rheumatology, Rikshospitalet-Radiumhospitalet Medical Center, Oslo.
With the aim of characterizing the disease's clinical and serologic features, researchers reviewed all hospital records of patients diagnosed with an inflammatory myopathy and analyzed the charts of those who had antisynthetase antibodies and pulmonary disease.
The mean age of these 30 patients was 45.5 years, and in one-third of the group, the disease onset was before age 40. Two-thirds of the patients were women.
Most patients had histologic evidence of inflammatory myopathy and elevated serum creatine kinase, but only four had elevations of creatine kinase exceeding 3,000 IU/mL.
Muscular manifestations rarely caused significant patient disability and were present at the onset of disease in only six of the cases.
Anti-Jo-1 antibodies were detected in 90%. Anti-SSA autoantibodies, commonly found in patients with Sjögren syndrome, were detected in 50% but only rarely were they associated with dry eyes and mouth, Dr. Palm wrote in a poster session.
Pulmonary involvement was classified as follows:

▸ Type I (acute): Found in 24%; rapid onset of dyspnea or cough with development of hypoxemia within 1 month after the onset of disease.
▸ Type II (subacute): Found in 64%; gradual onset of pulmonary symptoms.
▸ Type III (asymptomatic): Found in 12%; coincidentally detected pulmonary abnormalities on x-ray or CT scan with subsequent slowly developing pulmonary symptoms.
Honeycombing with end-stage pulmonary disease was found in 30.4%.
All but one patient had received treatment with immunosuppressive drugs including corticosteroids, cyclophosphamide, and rituximab.
Four patients died, two having type I pulmonary involvement. "While approximately 90% survive the first 3 years of disease, thereafter the mortality increases sharply, and new treatment strategies are clearly warranted," he concluded.

B-Cell Depletion With Rituximab Appears Promising for Myopathies


BARCELONA — Clinical improvement in a small series of patients with inflammatory myopathies treated with rituximab suggests that B-cell depletion may prove useful in these disorders, according to Dr. Marlies Blom of the department of rheumatology, Radboud University Nijmegen (the Netherlands) Medical Centre.

Among seven patients with dermatomyositis, polymyositis, or antisynthetase syndrome, two infusions of 1,000 mg rituximab 2 weeks apart resulted in a mean 30% increase in muscle strength at 3 months, Dr. Blom reported in a poster session at the annual European Congress of Rheumatology.

Patients' subjective reports of improvement in muscle strength were confirmed by handheld dynamometry.

The patients ranged in age from 38 to 58 years, and the duration of their disease ranged from 3 to 16 years. Four of the seven were female.

Previous treatments included oral and intravenous prednisone, methotrexate, azathioprine, cyclophosphamide, interferon, etanercept, and intravenous immunoglobulin.

A mean 13% improvement was reported on Health Assessment Questionnaire (HAQ) scores, and improvements also were seen in levels of creatine phosphokinase, a marker of disease activity.

In one patient, a muscle biopsy taken 4 months after treatment showed a total absence of CD20+ B cells. This patient's Disease Activity Score-28 (DAS28) score fell from 6.8 to 4.5 after 3 months, according to Dr. Blom.

After initial good response, three patients required retreatment for exacerbations of myositis at about 6 months.

No serious adverse events were observed and immunoglobulin levels remained within normal levels.

These results suggest that B cells play an important role in the pathogenesis of inflammatory myopathies, Dr. Blom noted.

Another recent report suggested that a possible rationale for considering B-cell depletion as a therapeutic strategy in dermatomyositis was that treatment with rituximab had previously been shown to result in improvements in muscle strength in humorally mediated autoimmune peripheral neuropathies (Arthritis Rheum. 2005;52:601-7).

The importance of humoral immunity in dermatomyositis also is suggested by the observation that perifascicular endothelial immunoglobulin and complement deposition are thought to result in the muscle ischemia and atrophy (J. Rheumatol. 2006;33:1021-6).

Furthermore, the observation that there are antibodies specific for myositis also supports the concept of B-cell-mediated humoral abnormality in dermatomyositis (Medicine [Baltimore] 1991;70:360-74).

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Friday, April 16, 2010

Friday Thankfulness...

So its Friday and I'm super pumped... we're feeling good, Chris is working from home, and its nice outside! :)  Chris and I are forward to working in the yard and house this weekend as well as getting together with friends to grill out.  Today I woke up not feeling too bad and feeling like my energy is coming back.  Anxious for my doctor's appointment next week!  I'm only had some soreness in the backs of my knees and my back continues to flair up... but its tolerable pain. :)

1... Warm weather!
2... Potbelly pickles... yummy!
3... Sleeping with the windows open!
4... Date night tonight for Chris and I... its been too long!
5... Grilling out!
6... Looking through old pictures... I have found pictures from elementary school on up... its a hoot looking at how much Brant, Kelly and I have changed!
7... Finding Euro pillows 2 for $22.00 at Homegoods... our guest bedroom is starting to look cute! :)
8... The excitement that my mom comes next weekend! :)
9... The fact that I had no fever after my infusion!
10... Starting decorating projects with Chris... can't wait to start to paint certain rooms! :)

So... yeah one of my mom's good friends daughter had a beautiful baby girl... her name is Kenley Rose... isn't that precious?  She's beautiful too.  So they asked me to make the baby announcements... so much fun!  I'm in the process of finishing them up but this has entertained me this week!  How much fun!  What do you guys think??  My creative juices have been flowing since I've had to "take it easy."

The picture of Kenley will go below the K

Hope everyone has a great weekend! :)

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Wednesday, April 14, 2010


So... I was able to get out of the house a little bit to run a quick errand to Wal-Mart... it started to rain really hard on my way home.  When I got upstairs... this is what I found hiding under the covers. I had to share.

Hannity HATES thunderstorms.

All in all we're doing okay.  I have had a constant headache and my back/neck has been hurting really bad.  So tonight I caved and took a tramadol... hoping the pain reliever will set in soon.  Other than that, still no fever so that is something to celebrate! :)

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Tuesday, April 13, 2010

Rah-rah-ah-ah-ah! Roma-roma-mamaa! Ga-ga-ooh-la-la!

Okay.... so my mom has been putting off reading my blog.  She wasn't sure she was going to be able to due to emotional reasons (this has been just as hard on me as it has been on my family).  So I got an e-mail this morning from my mom that she has sat down to start to read my blog and although it was emotional for her, she was really glad she did.  But she had one critque... I forgot to mention Gaga.

So... if you've read some posts before or know my mom you might pick up that she loves Lady Gaga.  Heck, she got her grandchildren to call her Gaga.  She even admitted over Easter that she might be a "little" obsessed as she exclaimed to me how she was disappointed that MAC was sold out of the Lady Gaga lipstick when she tried to get some.

So anyways, for her birthday, Chris and I decided to surprise with Lady Gaga tickets for up here in Minneapolis... after "whooping" it up for a little bit, she then began to discuss what she should wear for the concert in August... you know, jeans are good and she wants to look cool, but not like she's trying to hard.  Chris and I laughed about this for about 5 minutes.  Anyways, this should be quite entertaining as the last concert my mom and I went to was last August and it was Rod Stewart.  My mom loves Rod Stewart... i.e. My name???  But I dunno... I think this will top her Rod Stewart concert for sure.  Should be a good time... we have to wait till August 30, but I will definately blog about the experience-- especially since everytime I'm with my mom I have fun... and then you add Gaga... look out!

Can't wait to see what Gaga wears... so far this is my favorite gaga look... maybe my mom can recreate this look for the concert??? thoughts?

I'm feeling "okay" today... some tiredness and nauseness from the infusion, but all in all not too bad!  No fevers yet... yeah! :)  Looking forward to a relaxing, quiet day with my kitty! :)

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Monday, April 12, 2010

25 year old in an Elderly World...

Well... my first round of infusion is done.  All in all it wasn't too bad. 

We started our morning at about 5:30 am showering and getting some breakfast for the morning.  We arrived at the clinic in Edina at about 7:15 am for my infusion appointment at 7:30 am... this is when my anxiety hit me hard.  My faced got flushed, hands started to shake, stomach upset... and worst of all... I kept having to pee (more on that in a bit).

I absolutely adore all of the people that work there.  They are so friendly and I couldn't believe that all of them remembered me (I'd only been there once before)... Chris later pointed out that I do stand out in the office as the next youngest person is probably in their 50's.  I personally just think I'm that memorable! :) just kidding!  Anyways, Mary, one of my favorite RN's helped me, so that helped with the anxiety but my pulse remained at around 126 for the first 2 hours... YIKES! :) 

So yeah... Chris and I find a chair, they give me some meds, take my temperature (98.7 whoop whoop!), and then I usually have to run my hands under hot water to pop my veins as they have a hard time finding them... this time that didn't work so the IV was located in the side of my arm which was a little more uncomfortable but not too bad. 

Yes... I took a picture so you all can experience this! :)

So yeah... you have to sit there for about 30 minutes while the start your IV with water and then begins the 4.5 hour infusion process of the lovely Rituxin.  Yep... each one of these bags is a lovely $20,000... insane isn't it??? 

Rituxin bag and water flushing bag, below that (not pictured) is a little machine that monitors the quickness of the flow of my IV.  Some IV drips can just drip, but mine has to be monitered in 30 minute intervals to increase the speed of the drip.

So yeah... at about 8:30 am we started the Rituxin infusion... which then began the "up down process" as I will refer to it.  When I get nervous... I have to pee.  So literally for the first 2 hours I was getting up and hobbling around with the above machine to the bathroom... quite the sight and annoyance.  But hey... what can you do!?!  I think I set a record this time by peeing 6 times in the first 2 hour of my infusion.

The first two hours I also experienced a a slight reaction to the infusion... but nothing to be alarmed about.  I just had a hard time swallowing due to a scratchy/itchy throat... 8 hours later I'm still feeling it a little bit, but that happens a lot of times with infusions.

So finally I settled down halfway into the infusion (it was a good thing too as Chris had to leave to use the internet for work-- no wi-fi service) and began to enjoy the movie I brought to watch.  Chris brought "The Proposal" for me.  Can I just say I LOVE THAT MOVIE! :)  I literally laughed out loud numerous times while watching it.  The "Get Low" scene where Sandra Bullock and Betty White are "giving thanks to mother earth"... I don't know why but I can so see my mom and I doing this 30-40 years down the road... Can't you picture Marsha in a headdress??? Just kidding, but funny thought.

Here is my view for 6 hours... the chairs are pretty comfortable.

After the Rituxin bag is empty, you go back to the water bag to flush the system for about 30 minutes.  After that Chris and I went and grabbed a quick lunch... where I almost feel asleep at the table.  We grabbed a little Starbucks (Chris was tired and still had to keep working the rest of the day) and headed home where I proceeded to take a bath and drink an iced carmel macchiato (one of my favs).  I then opened the bedroom window and took a nap... I was so tired mentally and physically and my headache started (I usually get those for a couple of days after the infusions).

I think a lot of my anxiety came from the "unknowns".... what if this doesn't help more like its suppose to and I have to go back up on prednisone???  I can't stand being tied to a chair either and that is literally what you feel like for 6 hours.  All in all... it wasn't bad, but I do hate going there as it just reiterates the feeling of being SICK! :(  A lot of people around me are noticeably sick and have issues other than just rheumatoid reasons, granted most of them are elderly.  I talked with a lady that has RA and her knuckles were literally swollen 2 inches.  Its hard to look at people like this and think "that might be in my future."  But hey... I did it and I'm focusing on the fact that I still feel good! The next oneis in two weeks and my mom is coming up for it... which is great as she talks a lot and it'll give Chris a break!

Thanks so much for all the phone calls, e-mails, text messages, etc.  It truly means a lot!  The next couple of days I'll most likely be taking it easy and the infusions tend to take a lot out of me... luckily I have fun "projects" to keep me busy!  I'll keep you updated!
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Sunday, April 11, 2010

Anxiously waiting...

Heather and Liz came to visit!!!!!!!!!!!!!

"True friendship is like sound health; the value of it is seldom known until it be lost." - Charles Caleb Colton

So this weekend was filled with much laughter.  My sorority sisters Heather and Liz came up to visit from Des Moines... I can always count on those two to provide laughs.  We had a great time visiting all day Saturday and then that night two other sorority sisters that live in the twin cities area, Nicole and Trisha, came over along with Nicole's husband Seth... which was great for Chris as they had a man date to Buffalo Wild Wings while us girls chatted!  I'm so blessed to have such wonderful and supportive friends.

So the weekend came and went and now we're faced with packing for our 6:30 am departure to the infusion office.  My mom called and asked how I was feeling and honestly hadn't really thought about it until this afternoon... I guess I'm just feeling a little anxious and curious at the moment.  I'm wondering if this infusion is going to make me feel even BETTER or if it will just keep me at this constant pace.  This infusion (or IV drip) doesn't hurt at all, the only bummer is they always have a hard time finding my veins in my hands... so I've been DOWNING the water today.  Hopefully it won't be too bad tomorrow and they'll find my vein right away!

I guess the only thing I didn't like about the infusions last time is 1.  They're 6 hours and 2. The next youngest person that was there was probably 70 so Chris and I stick out like a sore thumb.  I guess the number 2 is the hardest because it just makes me realize how "sick" I really am... last time I came away a little depressed.  So... in preperation for that I was allowed to buy two new movies to watch during the infusion!  Whoop Whoop! Yes I'm living large ;)  But I bought the The Proposal and Bride Wars... looking forward to having a chic flick morning, while Chris works away.

Okay on a side note I found this picture on my computer and had to share for laughs... this is little Miss Keegan at Christmas... how I captured that face I'll never know, but its priceless! :)

Keegan Lee
Christmas 2007
7 Months Old

I will update tomorrow night regarding the infusion process and how I'm feeling... thanks in advance for your prayers! We're just going to keep moving forward and hope for the best!
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Friday, April 9, 2010

Emotional rollercoaster

So... its been kind of a tough week.  This blog is a little hard to write, but when I started this thing I made a pact to myself to be completely honest and how I'm feeling physically and emotionally.  I kind of hard an emotional break down this week.  It seems that I've been more emotional as of lates.  I chalk this up to the fact that in 2009 I was so physically sick, thats all I focused on... getting through the physical pain.  All of the emotional things that were going on in our lives were pushed to the side.  So since I'm feeling better, it seems as if the flood of emotions in dealing with my disease have started to poor on. 

A lot of times I push the feelings aside and bottle them up, but in the end I know I need to talk about them and come to terms with them.  So many times I do not want to complain because I know there are people that are far worse off than me... but coming to terms with the issues I have I've realized is part of the healing process.  I'm thankful to have a husband and a mother that I can openly talk to about this and not feel like I'm complaining.  So hear it goes... a glimpse of what is going on in my heart and mind-- you may continue reading as long as you don't feel sorry for me, that's not the goal. :)

So many times I sit here during the day by myself and look at how many things/experiences were taken away from me and Chris.  My disease took away our honeymoon and our entire newlywed life.  Our first year and a half of marriage as been filled with doctor appointments, cancer scares, infusions, fevers, muscle pain, and the feeling of the "unknown."  A lot of times I feel immense guilt that I have "wrecked" Chris' life.  I know he doesn't feel this way, but its hard to not think about "what could of been."  Your newlywed life is about experiencing new things together, going on trips and meeting new people.  A lot of times last year we were lucky if we could even get me out of the house.

Another thing that I'm struggling with is the fact  okay... now what.  The disease took away my career and I know I'll never be able to go back to a 9-5 job, if anything.  In this regards I feel lost.  Chris always says that my "job" is to get better, but I can't help but wonder, what if I don't???  With a chronic disease and a weak immune system there are so many risk factors that you just never know what the next month will bring, let alone the next day.

One of the more difficult things to come to terms with has been the physical aspect... the disease has completely taken over my body.  Filled with 50 pounds of fluid, it will take a long time for it to come down.  Many times I can barely look in the mirror... it just doesn't look like me.  Along with the fact that I might never be able to carry a child, it just been hard to cope with.  The last one is a more sensitive issue that I haven't quite been able to cope with... just yet.

I find that all of things I have felt, but bottled up.  Wednesday night, I just started to cry, at first not knowning why, but then the emotions began to poor in and I finally really sat down and let everything out.  Even ones I "knew were stupid."  I even allowed myself to get mad about it... first time.

This past weekend we were with my parents and saw some family friends, that are literally like an aunt and uncle to me... everyone commented on how "the old maggie is back"... I guess I never I had left the building though.  They all talked about how I had that glimmer back in my eye and that spark of spasticness.  I guess it never occurred to me that my personality had changed a little bit... I knew the physical part had, just didn't really realize what I was showcasing from the inside as well.  I use to think I did a pretty good job of covering up if I didn't feel well... I guess it goes to show you that the people that really know you can always tell.

I know God has a purpose and I just need to trust in him... but after a year and a half of fighting its hard not to waiver a little bit.  I feel much better expressing these emotions.  I guess I never really did due to the thought of "being weak" or "ungrateful" for what I do have and can do.

I've been overwhelmed with the support from most and the lack of support from a few.  Most people have told me this blog has really helped them understand what I'm going through and has provided them with a glimpse of what goes on in my daily life.  Others have told me that is an "impersonal" way to get information across.  Well todays blog is probably the most personal one and I'll be honest, I feel good after writing this all out.  So, if the blog only accomplishes healing for me, thats good enough for me to keep typing.  Phew... I think I need a drink after that... oh wait it's only 1 pm... but isn't the saying its 5 o'clock somewhere???  Anyways... Cheers for a great Spring Friday!

Friday Thankfulness:

1... The fact that Liz and Heather will be here TOMORROW from Des Moines!!!!
2... Get together tomorrow night with Heather, Liz, Trisha, Nicole and Seth... can't wait to have yummy food, laughs, drinks and good memories!
3... The thought of Chris coming home early! :)
4... We got to celebrate Easter Sunday with my parents and in bettendorf.
5... 60 degree weather
6... Girl scout thin mint cookies
7... Date night with my husband
8... The listening skills of my husband
9... Hair cut appointments... so relaxing
10... Wearing flip flops!

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Wednesday, April 7, 2010

Acid reflux...

So yeah... 4 am rolled around and I woke up with a lovely burning sensation down my throat.  Hit by the acid reflux fairy again! UGH!  So comfortable... especially when your husband is sleeping soundly next to you!  Figured out a new trick though... if I put my corner pillow on top of Chris' it elevates my head enough to help with the acid reflux, but not to the point that I'll wake up with a stiff neck.  Needless to say... I officially hogged the bed! :)  I think I'm going to bounce up my dose of prilosec though... hopefully no more 4 am wake up calls... except from the kitty.

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Friday i.e. Wednesday Thankfulness...

So... it's midnight and I just realized that with all the Easter hype I forgot to do my Friday thankfulness... so instead, I decided I'll list 10 PEOPLE I'm thankful for instead!  The people that have been here for me from the beginning and ones I know Chris and I can truly count on for support.  Whether a phone call, e-mail, visit or text message, they seem to be the ones that truly "get it" and have provided moral support without needing a pat on the back.  If I'm having a bad day or feeling blue these are the people I look too... usually I don't have to look too far as one of them is already calling or coming over.

1.  Chris- lets be honest, I pretty much have a perfect husband.  God truly put him in my life to handle this situation.  I don't know where I would be if I didn't have him by my side day by day.
2.  My mom- lets just say I can always count on her to make me smile.  Last year when I couldn't walk my mom was up here cooking and cleaning for me and Chris... she is truly a blessing.
3.  My dad- always knows how to make me feel beautiful... even when I feel like a big blimp.  My dad has especially been there for moral support for Chris and encouraging him along the way which has helped.  My dad, is the busiest person I know, but always makes time to come visit and e-mail.  Without his support this past year I don't know where Chris and I would be.
4. My brother, Brant- I can always count on him for a good laugh... and know that he has come back to the "right" side of the political discussion, a good conversation.
5. My sister-in-law, Kelly- Can always count on her to cheer me up.  Whether a phone or skype date, she is always there lending her advice and listening patiently to vent sessions--- which there have been plenty.
6.  My mother-in-law- Thankful for the homecooked meals every now and then and the weekly e-mail/phone call to check in and make sure we don't need anything.  She has also been a great support system for Chris.
7-9.  Molly, Liz, and Jess-  The 3 girls that regularly call, e-mail, text, visit, or send cards/care packages.  Thankful for these pick me ups throughout the months.
10.  Hannity-  Okay, I know he's not a person, but honestly, he's the one by my side all day long.  When my feet are cold, he lays on them, when I can't get out of bed, he sleeps with me and cuddles with me all day.  Although I am lonely throughout the days, I can't even imagine what life would be like without the cat.

He got into some of my fake plants and pulled them to the ground... he looks so innocent... NOT!

Yes... there is a cat in there.
Hannity likes to sleep in covers.

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Tuesday, April 6, 2010

Trying to find WOW moments...

So first off... Easter was amazing. We started off the weekend with an amazing drive, no muscle pain at all, and stopped off to see my best friend, Molly, and her fiance Neil in Cedar Rapids for dinner. It was great to catch up and see her amazing engagement ring! :) We then continued on our way to my parents and ended the night on their screened in porch with a drink in hand and a fire roaring! I couldn't help it, I was just happy.

This attitude continued throughout the 4 day weekend. It was an amazing feeling to go to church on Sunday with my family... especially since we have not gone to that church since we were married. St. Paul is one of the prettiest churches I have ever been apart of. Pastor Peter Marty always gives the most incredible sermons. This particular sermon hit home as it talked about focusing on your "WOW" moments... you know the things that you say WOW that's amazing to.

Which brings me to the return home. The weather was overcast... funny as it seemed to get darker and colder as we returned to Minnesota... matching my mood. I literally felt a wave of depression come over me as I crossed the border line, I know its stupid, but I just do not feel like Minnesota is home.

I don't know if its my mood influencing my body, but yesterday and today I woke up with muscle aches in my knees and a flushed face... I feel like I have a fever, but I don't. I know the mind is a powerful thing, but at the same time I'm due for an infusion so it could be numerous things.

It just seems like when we leave Minnesota, I almost forget that I'm sick, and the minute we come back to Minnesota are the reminders of infusions and docter appointments hits me. Its hard to focus on WOW moments, when alls I can focus on is cruddy stuff. I really have tried to like Minnesota and I know we'll be here for at least 3 more years until Chris finishes his MBA... I think I just tend to focus on the fact that "MN made me sick." Which it didn't, plus in Iowa there is a lot of distractions, up here not so much.

I'm hoping I can shake this feeling after a few days, I've been sleeping a lot which passes the time. On the positive side, Mr. Kitty was quite excited we were home. He hasn't left my side. In fact, he is laying on my feet at this exact moment. I could call that a WOW moment... what do you think?  I find my heart and "positiveness" starting to waiver... I'm almost going on a 2 year battle.  I'm hoping the next few months bring positive encounters and no more worries.

Thought I'd post some recent pics of Keegan and Mia I received from Kelly. This was Keegan's easter party at school! I got to talked to Keegan this weekend and right off the bat she recognized my voice. She was pretty funny and is developing quite the personality. If anyone knew my brother, just think of him with a pink dress on and a higher pitched voice. She is literally the exact image of him and my dad when they were that age. Mia is starting to look more and more like her mom. We'll see what her personality brings though!

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Saturday, April 3, 2010


Chris and I are enjoying an amazing Easter weekend back in Iowa... between family and old friends, it has been a dose a "fun" that we have needed. My mom and I made peeptini's last night... YUMMY! :) We're trying to figure out all the different combinations so you can have a drink for each peep they have... Here are a couple of pictures of the recipe I posted in my previous blog! I'll blog more later but for now I hope everyone has a wonderful Easter enjoying family, friends, PEEPS, and God's wonderful blessings!

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