What a weekend!!!

My poor little man has been so sick this past week/weekend and was running a 103.6 fever quite often.  I have hardly gotten any sleep as he has been glued to me at night and anytime his breathing changed, I woke up.  He is finally feeling better today and playing normally. 

I am so relieved that he is feeling better because I am absolutely exhausted.  I feel so guilty because even though I am happy he is back to normal I'm even happier that I can get back to sleep. 

ER visits while immunosurpressed

My 4 year old son has a pretty bad cold right now but is acting normal and up until last night he was not running a fever.  We have to keep a close eye on him with colds since he has asthma and the colds can activate the asthma and if that happens we sometimes have to take a trip to the ER which is scary since not only is my baby sick but I'm immunocompromised from medications.

Last night, my poor son had a febrile seizure from spiking a fever, so immediately I ran him to the nearest pediatric ER.  Each time I have to enter the ER it is dangerous since I can pick up anything immediately but as his mother there is no one else that I will allow to take him, including his dad.  While there I completely forget about me and my concerns; my focus is completely on him but they come back when we are home and he is OK.

Somehow, I can pick up any cold or stomach flu going around just by going to the mall but can go to the ER where there are all of these sick people and come out with never catching anything.  How does that happen?  Is someone looking out for the sick mommies out there?  I have no idea but I've decided to stop questioning that and just have faith that all will be OK.

Seeing into the future...

I'm just wondering how people contend with constantly being thrown curveballs....for the about a decade my lupus was so quiet, allowing me to have my children, but now it is still going crazy.  Just when I think it is getting better and staying stable something else comes up.  How many times can I take my poor children to get bloodwork with me, especially with a daughter that is deathly afraid of needles?  Is this going to scar them?  Is this going to teach them compassion?  Is this going to make them numb to other people's illnesses? 

They know that mommy is sick and that is just a fact to them; this is the norm since they have never known anything different.  But when daddy is sick or injured it is something else altogether.  They feel so bad for him so I hope that means they will be compassionate and not indifferent to other people.  I wish that I could see into the future to know that my illness is going to make them stronger, more compasionate people rather than being indifferent about other people since they deal with it so much as children.

Always Blessed!

Today, while having a playdate at a friend's house, we were talking about having good days and bad days and how this time of the year can be so chaotic that it can make for more bad days than good days.  These bad days could be due to spouses, financial reasons, pain, bad health, children and just plain stress but no matter what they all combine to make bad days.  I mentioned how the other day, I had a wicked pity party for myself but had snapped out of it very quickly and a friend said "Well you have to or you would spend life upset and it is important to count your blessings everyday"... 

This really got me to thinking about how fortunate I truly am and how much I should count my blessings.  Yes, I have lupus and it is part of me and my family but it doesn't make me who I am...
--I'm blessed to be my own person and still be healthy enough to do many of the same things that I could do if I didn't have Lupus.
--I'm blessed that there is such a thing as modern medicine which allows me to be as functional as I am
--I'm blessed that my husband has a good job so that we can afford my medications and doctors' apts.
--I'm blessed to have wonderful friends to support me.
and most of all, I'm blessed to have a wonderful family, with a loving husband and two adoring children.
These are things that I need to remember each and every day; especially on the bad ones.

Holiday Traditions

For those of you that read my post yesterday, I appreciate it;)

I'm in a much better mood today...the sun is shining, I listened to my 4 year old sing Christmas Songs along with the radio, my pain is less and my 5 year old said that she wanted to give her Daddy a "Big Hug" for Christmas.  I love the holidays and it got me to thinking about traditions that people do for the Holiday Season.  I thought I would share what we do. 

Growing up, I lived very close to my grandparents so we always spent Christmas Eve and Christmas Day with them but now we live 3 hours from my parents/grandparents and 6 hours from my husband's parents so we as a family (my husband, 2 children and myself) had to start a new tradition as we don't want to travel on Christmas with two young kids and it is a bit too far for my grandparents to travel for a day. 

On Christmas Eve, we usually go to mass and then come home and eat a big Polish dinner.  I'm Polish and it is important for me to keep our heritage going with the children.  After dinner, we make gingerbread houses and then the kids get to open a present from us (always PJs) and then some presents from their grandparents which were brought down earlier in the year.  After some playing with presents, we put out cookies, milk and carrots for Santa and the reindeers.  The other thing that we do and the kids seem to love the most is that we track Santa using NORADS site.  The link to it is http://www.noradsanta.org/en/index.html and it is awesome as it shows Santa moving around the world.

Christmas morning, the kids wake up and see what Santa has brought and then after that we have a nice Irish breakfast and they get to open the rest of their presents.  We spend the day in our PJs and dinner is usually some Italian food from a great restaurant down the street.

I really love the tradition that our family has formed and even though the first year without my extended family was a bit tough for me I've come to realize that life is all that you make of it.  If I go into it with a great attitude then it will be a great day.  Usually having this type of attitude can even rub off on people, it tends to rub off on my kids;)

Feeling down today

This is definitely a pity party post so I just want to give you all a head's up before you start to read this...

As I was filling up my weekly pill container to manage the 15-20 pills I take a day I started thinking that all of these meds can't be good for my body.  Which in turn got me to thinking about my mortality.  Lupus can be life-threatening, just as many other diseases can be, and it got me thinking about whether I would even get the chance to grow old.  I come from a long line of long living women, my great-grandmother was 82 and my grandmother is still going strong at 81, so I have that in my favor but there is only so much my body can take.

I am only 33 and I have a wonderful husband.  I also have a 4 & 5 year old and it breaks my heart that I may not be able to see them grow old.  I guess at this point I would just be ecstactic to see them both married with their own families.  What if I continue to go downhill and I don't even get to see them graduate highschool????  I want to be able to retire with my husband and live to be senior citizens together.  I know that anything could happen but the idea that all of these meds are probably destroying my organs along with the lupus really scared me today.

Fortunately, I saw some of my best friends today and they sat and listened to my concerns and helped me to get out of my funk but I really need to start living each day to the fullest; even more than I already do.  I hugged my kids a little tighter today and am going to go spend of the rest of the night cuddling with my husband.

So glad that I am the sick one!!!

As it gets closer to the holidays it seems like I see a lot more commercials for St. Jude's Children's Hospital  http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f2bfab46cb118010VgnVCM1000000e2015acRCRD and each time that I see them they break my heart and my eyes well up with tears at the thought of these children going through this.  I know that children are resilient but no child should have to endure a sickness like that.

As an adult, I often question why I am in pain, or so exhausted, or why I have to take so many medications...but I am an adult and have the maturity to know that it is part of my disease.  It just seems so unfair to put a child through this even though it is necessary and hopefully life-saving.  I also want to commend their parents as it must be a living hell but they remain so strong for their children.

I know that after writing this post I am going to give my children a big hug and thank God that they are healthy and I hope that everyone else does that too.  For those of you with sick children, my thoughts and prayers go out to you for strength and healing and wishing that I could take some of the pain away from your children. 

Wouldn't it be great if life worked that way?  We could help others out by taking some of their pain away at least for a day to give them a break.

Gotta Love My Husband

I need to preface this post by saying that my husband is awesome and does so much to help me out.  He works about 60-70 hours a week but still tries to help me out when I am not feeling good.  When he does help out he usually doesn't do things the way that I would like them done but they get done and I rarely complain however...

Last week, I was still recoving and carrying the laundry around was a bit much so my helpful husband did it and put the laundry away.  I didn't think much of it until I wnet to put the kids' laundry away today.  All week, they were wearing some odd combinations of tops and bottoms but as they usually dress themselves I figured they were just trying some new outfits out.  Today, though, while putting the laundry away I saw that all of those odd combinations were actually that of my husband.  He did the best he could but it really made me crack up.  Will I complain about it?  Definitely not as he will never do the laundry again for me. But just had to share as I was hysterical when I realized a thirty-something planned outfits for the kids and I thought they were completely mismatched even for young children to plan out.

Wish it really was that easy.

Unfortunately, I haven't been feeling that well the past few days but didn't think that anyone really noticed.   That was until today when my daughter sang her "Get Well" song and then made me a poster of my favorite things.  It was absolutely adorable and heart-breaking at the same time when she came and gave me a hug and said, "Now do you feel better?" 

She amazes me with how intuitive she is.  I quickly replied that it definitely made me feel better and then she asked if it made the lupus go away.  I answered her honestly that nothing can make it go away but that everything she does helps me to feel better.

Wouldn't it be wonderful if a song, poster and a hug made everything better, but that is only in the eyes of a 5 year old, right?

Mommy Guilt

I read all of the comments that everyone writes in and to be honest I absolutely love them and look forward to reading them everyday.  One comment, in particular, really touched me as it was a reality check for me that just because I am living with a chronic disease, I am not the only one that deals with mommy guilt.  There are so many other things in life that can give us mommy guilt, such as divorce, working, financial strains and the list goes on and on.  I started thinking about it and there are quite a few things that give me mommy guilt that have nothing to do with my disease so I thought I would list them to see if anyone else has the same mommy guilt. 

1.  Reprimanding my child right before they go to bed.  I hate that it is the last thing they remember before going to bed.
2.  Making them clean up a mess that daddy helped make.
3.  Forcing them to ride in carseats when most of their friends ride in booster seats.
4.  Taking their money from their piggy banks when I need a few bucks and don't want to go to the ATM.
5.  Sending my children to bed hungry when they refuse to finish dinner.
6.  Not realizing that my children are sick and sending them to school only to get a call to come get them.
7.  Having to do housework instead of playing with them.
8.  Not allowing them to do something, like painting, because I don't want to have to deal with the mess.
9.  Not hearing them at night when they have a bad dream and waking up to them standing next to my bed saying, "I had a bad dream.  Why didn't you come when I called you?"
10.  I think the biggest thing that makes me have huge mommy guilt is when I loose my patience with them and raise my voice; seeing the look on their faces is enough to make me cry.

I'd love to see some comments from everyone else about some things that give them mommy guilt so I know that I am not alone in this part of motherhood.

Without wonderful friends what would I do?

About 3 years ago, when my lupus was nice and quiet, we decided to move about 3-4 hours from my major support system that I had.  This support system included having my family not to far away and having some lifelong friends within an hour of me.  My illness made us question the move but (stupidly) we figured that since my lupus had been well-controlled for about 5 years that it would continue to be that way.  Boy, were we wrong!!

The first thing I did when we moved was join a mommy group...little did I know, these friends would become my saviors.  Over the 3 years, we have built friendships that have allowed me to share my illness with them.  When I have been at one of my worst times (and there have been a lot lately), I actually had a friend call me and say "I'm coming over.  When do you want me?"  She wasn't taking no for an answer, which is what I needed; I try to do everything myself and rarely ask for help.  They have all learned that I don't ask for help and have stopped offering it; instead they just do it.  Whether it is food, babysitting or just listening to me; they are my saviors.

I'm also very fortunate that even though my family is so far from us they give me the support I need also, even though they can't always be with me the phone conversations allowing me to vent help immensly.

So, I just want to say Thank You so much to all of you, without you I don't know how I would have survived the last 2 years.

Individual DVD Players are a Godsend

I've learned over the past few years since I've had children and my lupus has become active that it can be very difficult to bring children with me to the doctors.  As of right now, I go to a rheumatologist, neurologist, cardiologist, psychiatrist, endocrinologist...the list goes on, you get the point.  Between all of these docs I generally am at a doctor at least 2-3 times per month and they are never quick appointments. 

Because my children are still too young to be in school full time I have to take them with me; it is a huge treat for me when my husband can watch them and I can go by myself.   However, 99% of the time they come with me and each time I break out into a cold sweat wondering how I am going to keep them busy for the 1-2 hours that we are going to be there.  Fortunately, we discovered lollipops and individual DVD players.  These are my godsends.  Prior to each doctor visit, we go to the library, get a new DVD for each of them and they spend the time eating their pops and watching movies.  I get so many compliments on how well-behaved my children are!!!!

I have no clue what people did before portable DVD players.

No Energy Needed

I'm often faced with the words "Mommy, come play with me."  Unfortunately, this often comes in the afternoon when I am absolutely exhausted and trying to relax on my bed while they play together.  I would LOVE to have the energy to get on the floor and wrestle with them like my husband (the fun parent) does but between pain and exhaustion, I just can't.  So...we've discovered some great games that mommy can play that both my son and daughter like to play that really doesn't require any movement on my part.  I thought I would list them so that maybe it would help some of you.

1...House-->I'm the baby and just lay there;)
2...Restaurant-->One is the waiter and one is the chef while I am the customer.
3...School-->I'm the teacher and they work on letters/coloring and that sort of thing.
4...Simon Says
5...Red Light/Green Light
6...Dance Show/Freeze Dance-->Surprisingly my son loves this just as much as my daughter
7...Who can pick up the fastest?--->This is a great one as it allows them to pick up their rooms and get a   quarter if they do it the fastest and best.
8...Racecar Barbies-->Best of barbies and cars...who can race around the playroom the fastest with a  barbie in a barbie car.
9...ShrinkyDinks-->These can keep my kids occupied for at least 30 minutes between the coloring and shrinking in the oven.
10...Playdoh-->I know that this can often be very messy but sometimes it is so worth the hour that it will  keep them occupied; I actually like playing with it
11...Playing with aluminum foil-->This may sound bizarre but my kids like playing with it and making different statues, hats and other things that only kids can come up with.
12...Some generic non-messy craft-->Michael's is one of my favorite stores;)
13...McDonald's or Burger King-->The play area's in certain restaurants are geared to different ages and of course some are cleaner than others but we have a few that are great and I will often go there for an hour, order a drink for the three of us and let them go nuts while I sit.

If all else fails and they are still hyper then a nice quiet cuddle in my bed while watching a movie and eating popcorn usually works; we usually call this our PJ party night.

I'd love to hear from all of you if you have any other ideas as I'm always trying to find things that actually work well for both of my children and also allow me to relax on the couch.

Christmas Songs

Tis the season to be jolly!!!  I love the holidays and from the day after Thanksgiving until Christmas Day the only thing that I listen to on the radio is Christmas music.  It always makes my day and I love listening to the kids sing along to the familiar ones like Jingle Bells and Rudolph while driving in the car.  I always figured that holiday songs were safe, right...well, not for my 5 year old who has a mommy that is sick.

There is a beautiful song called New Shoes (I think that's its name) and it is about a little boy that wants to buy his mommy shoes because she has been sick for awhile and doesn't have much time before meeting Jesus.  The boy doesn't have the money so the man behind him in line helps him pay for it and the little boy is so happy because it means his mommy will look beautiful when she meets Jesus.  This is a song that would make anyone tear up while listening to but it made me almost sob when my daughter asked "Are you going to heaven at Christmas since you are sick?" She had a tremor in her voice and it was clear to me that she was now dreading Christmas.  No child should ever dread Christmas!!!!!

I quickly told her that mommy is going to be here for a very, very long time and that she doesn't need to worry about mommy going to heaven.  Once she realized that mommy wasn't going to die at Christmas she seemed to move on and is once again excited about Christmas but I wonder how much is still going on in that little head of hers.  I'm sure that more questions will come the next time she hears the song on the radio.

Who would think that a beautiful Christmas song would trigger such intense feelings from a 5 year old? 

Get well, Mommy

About 10 days ago, I was admitted to the hospital for pericarditis (inflammation of the lining surrounding the heart) and this was the first time that my children were faced with mommy being in the hospital.  It broke both mine and my husband's hearts to see them crying about mommy not coming home but I really didn't have a choice.  My daughter started praying to God to make mommy feel better.  Why should a 5 year old have to even think about this?  How do I make her feel safe and secure?  She knows that when people get old they go to heaven but now she has this fear that I am going to go to heaven and I am not old.   I know that kids are resilient but sometimes mommies are not. 

It has now been 10 days and it seems like both kids have moved on from it but I'm still reeling with the guilt of leaving the kids, even though it was not my fault.  Mommy guilt, no matter whether you are sick or not, is just part of being a mommy.

Family Dreams

As soon as we got married, I wanted to have children but my husband wanted to wait so we waited about 16 months or so before we decided to start having children. At the time, my Lupus was quiet and I was not on any medications so at the time I didn’t think of the ramifications my illness would have on my future children. Lupus was the farthest thing from my mind….getting pregnant was in the front of my mind;)

I was very fortunate that I got pregnant easily and carried my beautiful daughter to 37 weeks when she was born in 2004. Throughout the pregnancy and after it, I didn’t really think about my Lupus; it was part of who I was but it was not running my life. Three months after having my daughter, we became pregnant with my son, who was born at 36 weeks in 2005; we officially had “Irish Twins” and were ecstatic. Life went on and Lupus continued to be in the back of my head. I had to take 1 medication but I was a “normal” mommy.

Unfortunately, that all changed in March 2008. In March, I underwent minor, ambulatory surgery but unfortunately got an infection from being intubated and this was the start of Lupus coming to the front of my mind again. I need to preface that my Lupus is considered mild in comparison to others who have organ involvement; I’m fortunate that my kidneys and liver are not involved. I have joint, central nervous system, skin and neurological involvement.

The point of this blog is to not complain about my lupus or discuss how many medications that I am on but to talk about the trials and tribulations of having a family and raising young children with a chronic disease. I’ve just wanted to give everyone my story so that you may understand some of my thoughts.

Getting a Diagnosis

I have Systemic Lupus Erythematosus, also known as SLE or just plain Lupus. I’ve attached two links that are great resources for further information. I’m not a medical professional and it is not my goal to educate people on Lupus but these are two sites that are very helpful for me; www.lupus.org and http://www.mayoclinic.com/health/lupus/DS00115


My story begins in 1996 when I was living the life of partying in college. I was out every weekend drinking and loving life and also suffering from knee pain and the occasional “asthma attack”. At the time, we thought I had relatively serious asthma but looking back we now realize that it was pleurisy (inflammation of the lining around the lungs). Anyways, the pain didn’t slow me down and was more of annoyance…unfortunately, that all changed in 1998 when I graduated and entered the work force.

The pain in my knees became almost debilitating and what was even worse for me was that I had a bald patch on my head that was about 2 inches in diameter. Loosing hair for any woman is devastating but only being 22 years old was horrific. At this point, we had no idea what was causing my knee pain and hair loss so the doctors started treating the two problems separately, while undergoing blood work for everything they could think of, including Lupus…everything came up negative. My hair grew back with treatment and my knee pain was controlled by meds but a new symptom arose and that was a “blister-like” rash on my face. I hated this rash but it became the answer to my prayers.
While at my doctor’s one day, he noticed the rash and together we started connecting the dots between all of my symptoms from the past 5 years. He admitted me to the hospital to undergo tests and to see a rheumatologist. In November 2001, I was diagnosed with Lupus.

On one hand, I was so excited to have a diagnosis and finally know what I was fighting but on the other hand I was devastated to have a chronic, life-threatening disease. I felt so bad for my future husband as the idea of him having to live with a “defected” wife for the rest of his life broke my heart. I think that is what I first felt when I found out that I had Lupus; how was I going to be a good wife to him?. I almost called off our engagement because of it. My husband, is the most supportive husband that I could ask for but I still feel bad to “burden” him with this, even 8 years after my diagnosis.

Here Goes Nothing

I've never really thought I would be "blogging" on the internet but after talking with a friend who does it on a regular basis, I thought it would be worth a shot.  I'm sure that there are other moms out there who are dealing with the same thing that I am so maybe I can help someone by writing about my trials and tribulations.

To begin with, my name is Cory and I am a 33 year old stay-at-home-mom to two beautiful children.  They are my "Irish Twins".  My daughter is 5 years old and my son is 4.  Along with living with my children, I live with my wonderful husband, whom I've been married to for 7 years and known for 14.  We also have a dog and a hamster.  Our house is a circus at times...add a chronic illness to the mix and it can become downright chaotic.

I'm hoping to use this blog as a place to help me come to terms with the guilt I often feel for living with a chronic illness while having a family.  I also hope that my story and thoughts may help other people who are living with a chronic, often debilitating, disease.

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