2010..the year of change December 5, 2010

A few days after the new year i had an experience that changed my life forever.
No need to go into detail about the experience as a whole as it is rather long and boring.
It changed who i am as a person, Wife, Mother, Daughter and Friend and i am forever grateful for that experience.
During this experience i learned a lot about myself and who i have become since Oct 2006 when i was diagnosed with Postpartum cardiomyopathy (PPCM)

I decided it was time for me to go back to work part-time….i just felt i needed a “work break”
I lost a little bit of who i am since my diagnoses in 2006 and i needed to get some of who i used to be back.
So in the begging of Feb I accepted a position as a educational home visitor/social worker for a Social service/child development center in chicago inner city.
I was very excited on my first day Feb 24, 2010 and after my first few weeks i felt like i have known my co-workers and boss forever. It was a perfect fit.
I loved the job, while i was nervous going into certain neighborhoods the families i served and what i was providing for them made it all worth it.

The kids took well to the change and loved their babysitters. We has a few different babysitters come to the house the days i worked.

While i miss being a full-time stay at home mom sometimes i know this is what i needed to do for my family and myself. It has made me a better wife, mom, daughter, sister in law and friend.

I have the best of both worlds right now. I have a “work break” three times a week and i have 4 full days with my kids at home. It is an extremely flexible job and the center is very family oriented which makes it very easy to be a part time working mom.
This has been one of the best decision i have made.

Some of My CRCL family – 2/2010

Nervous May 6, 2009

Surgery is set for 3pm today. I am a nervous wreck and very emotional.
I am kicking myself for being so knowledgeable in the medical field because I know TOO much about what could go wrong especially since I have a heart condition and wacky heart/health history.

I am staying positive though knowing that I am in the Lords hands and he will protect me but I still can not help but have those unpleasant thoughts once in awhile. It does not help that I am by myself right now. Kids are at my parents and Eric is at work.
I will soon go lay down and indulge myself in some TV until it is time to go to the hospital to get my mind of all my fears.

I feel I have to just say thank you to all who read my blog and thank you to all who have prayed for me. Thank you to all my family and friends who give me the support I have needed and who have helped me so much these last two years.

To my beloved Husband Eric thank you for all you do for me and us and I love you so very much. Thank you for all your support these past two years. Without you Eric I would not be. I love you with every fiber of my being.

Noah, Silas and Zofia, you are the light of my world and I love you more then I can even express. Not having you here with me right now hurts so bad. Your innocence love and hugs is my best medicine. You keep me going and you keep me smiling. I love you guys so much and please never forget that.

So now I am off to relax before the surgery. Danielle will update my blog as things happen today so check back later if you want.

Please keep not only me in your prayers but Eric, Noah, Silas and Zofia, My parents, Brother and SIL and nephews and for Danielle and the Doctors.
Please pray that if something terrible happens that all the above people will be ok and loved and supported. I do not want to sound like a pessimist because I am not; I am just a realist today. I need to be, the more you are aware, the more you will be ok this is something i have learned along the way.

This picture was taken this past Sunday at My Father’s church. This picture is very special to me as it is taken of my whole family with ArchBishop Job who is not just our Bishop of the Midwest Diocese but is a close family friend who i have known since i was 10 years old. He is not only close with my Family but he is a big part of Eric’s life and played a role in us meeting and our journey together. He helped Eric and I along the way and was to perform our wedding along with my Father but he became ill and was not able to make it. It was very special to have him at My Fathers church and the church i grew up in for the 20 year Anniversary Of St. Joseph’s this past Sunday.
( This picture sure does not show off the 17 pounds I have lost it makes me look I gained 17 pounds…bad pic, not a flattering shirt or skirt combo:-) This is just a note to self so when I look back on this I do not cry:-))

It was also very comforting for me to be able to get the bishops blessing and have him say a special prayer over me just days before my surgery. His blessing and prayers have really comforted me.

In my heart and mind i am confident that this surgery will be a success and complication free and i will be at home enjoying my husband and kids tonite or tomm.

In the meantime i will be praying all day saying these prayers over and over today.

Lord Jesus Christ, Son of God, have mercy on me, a sinner.

Jesus Christ, my Lord and Savior, You became man and died on the cross for our salvation. You healed people of sickness and affliction through Your love and compassion. Visit me, Lord and grant me strength to bear this sickness with which I am afflicted, with patience, submission to Your will and trust in Your loving care. I pray that You will bless the means used for my recovery and those who administer them. Grant that my sickness may be to my spiritual benefit and that I may live the rest of my life more faithfully according to Your will. For You are the source of life and healing and to You I give praise and glory, now and forever. Amen.

O Christ, Who alone art our Defender: Visit and heal Thy suffering servant Juliana delivering me from sickness and grievous pains. Raise me up that I may sing to Thee and praise Thee without ceasing, through the prayers of the Theotokos, O Thou Who alone lovest mankind

Preschool screening March 25, 2009

I will be taking Noah to the district for his preschool screening today. It is not a requirement but I felt it was important. I guess as a former preschool teacher myself I want to make sure he is on track.
I am SO nervous.
I know he will do great but i have struggled a lot this year with my decision to keep Noah home. I have tired very hard to be consistent with doing “school time” with Noah and making sure he is on track developmentally. He enjoys having “school time “ with me and he really likes learning.
So i feel like today is a test for me to make sure i did my part in teaching all the things my 3.5 year old should know plus more.
I know it is not about me and if i did a good Job but i sometimes feel guilty that i kept Noah home.

Noah and I needed this year at home together given how crazy thelast two years was for all of us. It was a time of fabulous bonding and we both needed that so much.
I pray that Noah had a good morning and listens to the teachers and has fun with it.

I am so excited for him to start preschool in the fall. This all goes along with the new chapter in my life and I am very excited about it.

He has not even started 4year old preschool and I am already crying….i just can not believe how big my baby is and in the last few months he has matured so much!

I know I will miss him while he is gone but it will give Silas and I a chance to bond and spend some one on one time together and sweet little Silas needs that….he is such a mommas boy and he took my sickness and hospital stay the hardest ( he still talks about when I was in the hospital and how that was BAD) so this will be really good for us.

It is amazing how at one minute it feels like so much has unraveled and the next minute everything has fallen into to place so perfectly.

We are ready for Noah to go out into the world and spread his wings.

Survial mode February 14, 2009

Yesterday something happened that disturbed me very much as a mother.
The boys were TERRIBLE ALL DAY yesterday and so finally at 5.57pm exactly after the 45896 they pushed and hit Zofia I put them to bed without dinner.
They were shocked to say the least; Eric was not even home yet. They told me all about how they needed to eat dinner and put on PJ’s and watch TV with daddy first and I explained to them that they were not being good boys and bed was it end of story.

After I put them to bed I sat on the couch with Zofia and felt like the BIGGEST failure ever. Eric came home a few minutes later and I explained to him what happened. He went upstairs to talk to them and then came down and asked if I had eaten. I told him no and that his dinner was on the counter he looked at it once and said I am going to get a burrito and asked if i wanted anything. That was funny because I literally through something together and called it dinner….this has never happened. I could not even make a proper dinner because the boys were so BAD.

After we ate and I put Zofia to bed I sat and pondered about what happened today.

It was them that I began to cry and realized that I had lost control of my kids.
Last year when I was sick and prego with Zofia I entered SURVIAL MODE. I did whatever I could do to make life easy for the boys and I.
I let them run the show because I could not discipline them the right way and could not chase after them, I sometimes could not even talk to them without getting so out of breath i would have to take a break to catch my breath and by that time I had lost there attention. They were only 1.5 and 2.5 year old.
Then I went on home bedrest and then hospital bedrest for a month. There lives were changed upside down in a matter of weeks. Once I had Zofia and was home I had a nanny and other family and friends coming over everyday to help me because I was so sick and there was no structure really at all.

This summer when I felt better we were so busy making up for lost time that I did not even pay attention to how OUT OF CONTROL things had gotten.
Then I got sick again and I went into survival mode again without even realizing it. This time it was even worse because I did not have as much help as when I was prego with Zofia or after I had here. I had felt good for four months so there was no need to keep the nanny around or have friend and family over as often to help. I did not ask for help when I got sick again in October because I was too ashamed and did not want to admit that I needed help I just wanted to be better and be normal.

I went to school for child development, I worked in preschools, kindergartens and daycares, I was a nanny and I taught parents tips and tools for good parenting. How could I admit that I lost control and that I did not know what to do?
I was a pro at this yet I was failing.

Over the last several weeks I would often be weepy and sad and confused for no reason that I could think of at least, I just felt like something was off and I could not figure it out.

Finally last night it all hit me and I realized it was time that I let the boys know that mommy is better and that mommy means business and I knew no other way to gain control again.

My Survival mode became a habit or a rut if you will. It was all I knew for what felt like a really long time.

I decided I needed to make a routine for the morning and STICK TO IT. The mornings will be structured, filled with learning time, structured free play and many educational and social outings.

I will start on Monday and i know it will take time for everyone to adjust but once we do we will LOVE it and be happy.

I realize that it is not my fault but what I HAD to do to survive while my heart was giving out and I was too sick to sweep the floor. My heart failure relapse happened so quick that I never had a chance to figure out the RIGHT thing to do, I am not even sure there was a RIGHT thing to do in such a situation. You do what you have to do to survive.

I would be lying if I said I was not a little sad and teary eyed as I write this but that is just because the trauma of the last two years really hits me at moments like this the most.
In the end this is just going to bring me closer to my kids and make all of us stronger.

I know that God played a role in yesterday’s events and it was his way of WAKING ME UP.
It is times like this when I realize how important my relationship with God is and how when you feel like you have lost control and it will be too herd to pick yourself up God is right there to help you.
He gave me the wisdom and strength to face my worst fear.
In my heart I have known that I lost control and I did not know where to begin to gain that control back.
Right before the final straw last night I stepped into our Icon corner by myself and said a prayer and asked God to please help me through this and to give me the strength, courage and wisdom to get in control.
I was afraid, I was embarrassed and I was just at a loss, I felt like a failure.

I am looking forward to this new routine!

If anyone has any words of wisdom or ideas or encouragement I AM OPEN to ALL them just leave a comment or e-mail me at julianameng@yahoo.com

Thanks in advance:-)

All of a sudden December 2, 2008

On sunday i felt normal again….all of a sudden.
Sunday morning i felt better than i normally do on a sunday morning. I felt good but i told myself i would wait to see how i felt after church.
It was after church when Eric and I were sitting on the couch watching football and ALL OF A SUDDEN i felt better, i felt normal again and i felt like i could run to the Y and do 40mins on the Elipitical…i did not of course but i sure wanted to.
I woke up yesterday feeling good too and had a good day. I did not go to the Y becasue i wanted to give a slow go at being normal again.

Today however is different, It is 6.20am the babies are all still sleeping and i am showered and in my gym clothes ready to go.
I am going to do the Elipitical and sit in the hot tub.

So just as this “FLARE UP” came on ALL OF A SUDDEN, it has left my body ALL OF A SUDDEN.

At the end of Sunday and Monday night i was tired and my legs hurt but that is just part of the diease i will have no matter if i have a flare up or not.

I talked to my GP for a long time yesterday and he gaveme alot of encouragment and good info.
He is goign to also talk to the Rhemo i see on the 15th and suggest that they treat me with a low dose of lupus meds. He said that the average lupus diagnose is 5-8 years from symtpoms starting. He is SURE this is it though becasue of the heart issues when my heart is otherwise heathly and responding to meds well.

For once i feel there is a plan, for once i feel like all the docs are working together and for once i am happy and content and know that when i have another falre up tomm,5 days or 1 ymonth from now i will KNOW WHY and what to do to get through it, It will not be such a shock like it was this last time.
My GP said that i should not think of myself as “all better” because i am not ALL BETTER i will have GREAT days and BAD days but i will live with this for the rest of my life.
He said if i can accept that and understand it then i will get through all of this just fine.
My GP really is great and i am so glad i talked to him yesterday!

Off to wake the babes and start my fabulous day!!!!!!!!!!!

“A Flare up” November 26, 2008

I asked the doc yesterday when I talked to her why I felt so good for four months to then get sick again. I told her I thought the fact that my Troponin started to elevate again was weird since my heart looks good.

She said what I am in the middle of is a “flare up”. A flare up is when your symptoms return after days, week, months or years of feeling great. She said the fact that my troponin started to elevate a few weeks after my flare started is an indication that something is happening in my body, just what that something is is not yet known

A friend of mine who also happens to be a ppcm survivor also deals with the same type of systemic disease that i do, She has given me some tips on how to manage a flare up and what to do when i am feeling good to try and prevent a flare up.
These things include yoga, drinking green tea, listening to my body and getting as much rest as possible among other things.
I am excited to start implementing these things in my life. This will make me feel like i have control over my symptoms or that i am doing something proactive.
I am most excited about doing Yoga again. Before i got prego with Noah i used to do Yoga everyday and loved it and loved the effect it had on my body. I had every intention of doing prenatal yoga when i became prego with Noah but i could not. I was so uncomfortable doing it and it just seemed so much harder so i stopped.

Today i awoke and Said “today will be a good day” and so far it is. I feel rested and ready to tackle this busy day i have ahead of me and i will go about the day feeling thankful for all that i have and am!

Got the call November 25, 2008

It has taken me sometime to write this post because I am just not sure what to say.
Most of my blood work was inconclusive and so I am to follow up with the Rhemo doc here in Chicago on Dec 15.

This is what the doc had to say.
I have a systemic disease that has yet to FULLY manifest itself in my body therefore this systemic disease invading my body remains nameless.
She said this is a place were people with such conditions like lupus stay for a long period of time sometimes. She said getting a Dx of Lupus is a long, long, long road for some people and she is sorry to say that I am one of those people.
She did say that there are still ways to treat the symptoms I am having and that she could clearly see in her examination of me. She will let the Rhemo here decide which methods of treatment are best since he will be the doc I see regularly.

So that is that.
I am ok with all of this. I do not feel like we are still trying to solve a puzzle instead I feel like progress has been made and the puzzle is almost solved.

Now when I wake up each morning before I get out of bed I will say aloud
“today will be a good day”
And that is how I will approach each day. I will slowly start doing my normal activities and lay low when my body tells me to. I believe that positive attitude has a lot to with how you feel and so I will stay as positive.
I will not allow my symptoms to control my life instead I will learn how to control my symptoms.

Well now that was hard November 24, 2008

I went to the YMCA this morning for the first time in a month. All i did was walk the track very slow and took 1 break. I walked a mile and my breathing was very labored and i was very dizzy. We then went into the Hot tub and after about 15 minutes i could not breath so that was it.

As i was walking i said to Danielle that i could not even phathom working out with Sean ( the personal trainer) or doing the Eliptical for that matter. It is so weird to me that just a month ago i was doing a boot camp type workout with the PT and now i could barley walk the track.

This is how i was before i got better in June. This is when i get anxious for my blood results. When i feel this terrible i feel something has to show up in my blood.

I feel great that i went to the YMCA though and got all three kids ready and out the door by 8.45.
The best part of going to the YMCA this morning was seeing the boys face when i picked them up from playschool. They were so excited to be back there playing with kids and getting out of the house a bit so that made it all worth it.

I will lay low the rest of the day and hope that phone call comes today!

Feeling a sense of peace November 22, 2008

This past Wednesday i left Chicago with Zofia and my dear friend Danielle and her Daughter Rosie and headed to Cleveland, Ohio to go to the Cleveland Clinic in hopes of FINALLY solving this medical mystery that has plaqued me for 2 LONG years.

Cleveland Clinic was amazing. Everyone was so nice and everything ran so smoothly.
The Doc was very Serious but that is what i wanted. You could tell that she was interested in solving this mystery and took everything very seriously.
She ran a bunch of blood test, a total of 14 vails of blood was collected.
This is what she had to say.
She has seen a postpartum cardiomyopathy that was misdiagnosed, it in fact was Lupus. I found that to be very interesting and somewhat relieving.
She said that she has to review the blood work to see if any of it is “making any nosie” and that she would like to talk to my cardio. She said she would be in touch as soon as she had some info for me.
I can not be discouraged though if the blood work comes back negative as this is the way it is with lupus. A person can have all the symptoms and be in the middle of a flare up but that does not mean anything will show up in the blood, that is just the way it is with Lupus.

So while i have been to the best of the best and i feel hopeful that my mystery will be solved i have to remember that it may not be the right time yet.
She will guide me in the right direction and lead me to my next step if it happens that my blood test are negative.

I was feeling very anxious after my appt but we made a trip to see my Grandparents just 1.5 hours from cleveland and that calmed me down.
It was so wonderful to see them. They are so dear to me and i made their day by visiting them, they were so thrilled to be with Zofia for a bit. they made my day as well;-) I also had the chance to visit with my Aunt Maureen and that is always great afterall she is the reason i knew i wanted to be a stay at home mom.

We left early friday morning and it was not until half way through the trip that i became anxious again for that phone call, finally i called the clinic to see if my blood work was back and it was not all back.

So here i sit patiently! The phone call will come when it comes and in the meantime i will just go about my days without worry and anxiety.

I feel an extreme sense of peace tonite as i write this. I know that i was FINALLY listened to and fully evaluated by an expert and my symptoms were validated.

I will feel so peacfully if an answer is given to me but at the same time i have learned that such answers take time and the puzzle is not always that easy to solve.

I will post as soon as i have heard from the doc.

Thank you to Danielle and Rosie for going with me it was a real bonding experience for Danielle and I as well as for Rosie and Zofia….they love each other so much!

Thank you to everyone for your thoughts and prayers!

She would climb a mountian for me! November 14, 2008

That would be my dear friend Danielle. The tears are already pouring out of my eyes and I have not even gotten to the real tear jerker yet:-)

Danielle has been in my life for about 3 years now and each day our friendship gets stronger and stronger. We met at St. Georges Orthodox Cathedral ( the church we attend) when I was prego with Noah. Eric and I became good Friends with Danielle and her husband just after Noah was born, so when we got prego with Silas we knew right away we wanted Danielle and Randy tobe Silas Godparents.
They are not just our friends but our Family.

When I was first Diagnosed with PPCM in Oct/Nov 06 she admitted to me that she was real freaked out by the recent turn of events. I told her not to be and that I would be just fine.

In April of 2007 when I was going to see the Heart failure docs at Loyola Danielle offered to come with me. My mom was going to come but I wanted her to watch the kids and I wanted a friend with me.
Danielle is a real go getter, she researches everything from the best sippy cups to sports towels ( I never knew there was such a thing:-) and she does not take NO for an answer so I knew she would ask the questions i did not know to ask.

Danielle has gone to most every doc appt with me the scheduled ones and the last minute ones.

She has been to my house with as little as 45min notice to watch my babes while i go to the doc or to go with me to the doc.

She has spent countless hours listening to me cry and yell in frustration and pain. She has also spent countless hours researching PPCM, heart failure, troponin leaks, etc and she was even in contact with a PPCM researcher in Wa. when I was on hospital bedrest.

I cannot even express to you how I feel about Danielle, She is not just my Best friend but she is my advocate and my #1 cheerleader. She encourages me when I need it but she also is not afraid to tell me how it is when i need a kick in the Ass. She is the first to tell me I am not overreacting and that I NEED to call my Doc or slow down or what have you.

While I also have the support of Eric, My Mom and Dad, Joy, Nichole Mamie Sheryl and many others Danielle has been the one who has walked this road the most with me.

She will do just that again in a few days when we pack up my car and our baby girls and head to Cleveland for an appt with Rhemotologist at the Cleveland Clinic. It was Danielle who called and got me this appt last week while I was at the cardio.

She is taking three days out of her week to drive 7 hours with her 1.5 year old to attend a doc appt for me. That is utterly amazing to me and I am so grateful that I am a bit speechless.

She has supported me about going to Mayo or Cleveland clinic for sometime now and while there are some people in my life who think it is silly that I am going, Danielle always reminds me that it is not silly but the RIGHT thing to do.

The Cleveland Clinic is #2 in the country for Rhemotology and the Doc i am seeing specializes in Lupus.
I have had enough of the run-around with Docs here in Chicago and since Lupus is such a hard disease to diagnoses I thought I would just go to the experts.

Pretty much whatever this doc tells me I will believe because they are that good and she would not give me a run-around when she knows I have traveled 400 miles to see her. They deal with situations like mine all the time and people come from all over the country.

So on Wednesday around noonish Danielle and I will head on our journey for Answers. We are staying at a nice hotel with lots of room and we will make this a fun trip too, stopping at all the outlets malls on the way. She is my shopping buddy too:-)

So with all that said Danielle I love you more then you could ever know and I appreciate all you do for me more then you will ever know.
Thank you for being such a Fabulous Friend and for walking this road with me every step of the way.
Thank you for not just being my Friend But Eric’s too and for loving him and my precious children so very much!
You are a true Gem!