Nothing Big

I haven't been able to post regularly for quite a while. I know I need to get back into it because we need some way to be able to look back and remember. All that I've posted in the last year or so has been really big things. Today wasn't a huge important day. It was a really good day though. I've had those a lot more frequently lately and I'm really grateful for it. I need to keep better track of "little" things like today because, in the end, I think those will end up being among the most important things.

I had acupuncture this morning, like I do every Monday. That part wasn't particularly fun, but the kids had a wonderful time swimming at JoJo's while I was there. Then we spent the next three hours hanging out and swimming.

Taco Bell for lunch, eaten in dripping swimsuits at JoJo's picnic table. Swimming with Laura (who managed to fall into the pool twice without floaties today and swam to the side both times by herself in the ten seconds it took me to get to her) and jokingly helping the kids cheat as they played Marco Polo. Talking with JoJo as we watched the kids and played with the littles (including Aubrey, her granddaughter, who Laura calls "my Aubrey"). Hitting up Sonic on the way home to get slushies for everyone because it was happy hour. Letting the kids get Nerds in their slushies. Having Rob get home and get a nap for 30 minutes next to me. Getting to tell the kids they get to stay up late and have a campout in the living room (even more exciting for them because it's a weeknight) because Rob and I were going on a date. Meeting up with Christy & Dan and Susie & Drew for dinner at Red Robin, leaving Megan and Kylie at home to babysit (LOVE that we are at that stage of life!). Having the six of us watch Jurassic World together. Getting home and having all the kids settle down quickly and easily so that we will let them do this again sometime. Except for Laura, who insisted on having me cuddle her to sleep. Getting to talk to Rob for a bit, then scratch his head as he fell asleep.

It feels like I'm coming back to life. Getting to joke around with the kids again and even having the energy to boss them around again. Making it through the day and still having enough energy to deal with a cranky two year old who just wants to be held.

Christy got sick last Friday and she actually called me for advice. It's been a long time since she was able to do that. It felt nice to be able to fill that role again.

It's really nice to have Susie and Christy nearby. I've loved being able to do family things again with them. Watching them interact with my kids is amazing. I love it when two of us or even the three of us say the same thing at the same time or react the same way. All three of us laughed and snorted in the same places while watching the movie tonight. It's even fun to see our three partners react to the things the three of us do :) In the last several years, I haven't been able to have as much interaction with most my family and it's really nice to feel that connection with Christy and Susie. It feels like a part of my heart that was missing has been returned.

Nothing big, but it was a really good day :) I love being a mom. I love being married to Rob. I love hanging out with my sisters and Drew and Dan.

So I Don't Forget . . .

I'm hoping I never have to again experience what it's like to be told you have a long term terminal illness.  I'm glad I got the chance to go through it and I want to remember what it was like so that I'll know how to respond to others dealing with similar issues. There are so many parts you never hear about.

No one knows what to say to you. We stopped going to church for about a year because it took me several days each time we went to get over the emotional toll of attending church and seeing the reactions of others. Not that anyone was mean - I don't mean to criticize anyone. I had no idea what to say or do before going through this.

There were the people who didn't know what to say, so they avoided me. It made me feel like a pariah. I tried to stay as invisible as possible and never meet anyone's eyes so that I didn't notice when people quickly looked away or awkwardly ignored me.

There were the people who knew the generalities of what was going on and felt like they should say something, but felt awkward about it. Being asked how things are going when things aren't going well is hard, especially if I didn't know them well. Then I had to pick between being honest and explaining details, and just saying "no change". If I explained any new developments, I got to relive having to go through learning about them myself as I watched the expressions on their face as I talked. I usually just smiled and said that things were the same. The disappointment on their faces with that statement was much easier to handle. Having people who barely knew me, but felt obligated to ask me how I was doing also made me realize all over again how sick I was.

The best responses were from people who obviously cared, who didn't try to sugar coat things or be falsely optimistic. One lady came up to me at church after I had posted a depressing update on my blog. I didn't know her well, but she said "I read your blog post. It made me want to cry. I'm so sorry." That meant so much to me. She didn't ask any more detailed questions, but she let me know she cared. She kept up on what was going on by reading my blog posts. I tried to post any major updates on my blog so that I didn't have to explain it over and over to people. Every time I had to tell someone about it, I relived it.

Another response I loved was "You're in my prayers. Let me know if I can do anything to help." Not asking for additional information. Letting me know they were there if we needed help and they cared.

Basically, the responses that meant the most told me they cared, this sucked, and let me know they were there if I needed them.

Another issue that was hard to deal with was the incredible decrease in energy and capabilities, but no outward changes that made that obvious. I think I've seen more about this online than any other part of having this type of challenge. I didn't look sick. Many people didn't understand what it was like. I lost friends and had family members judge me because I didn't have the energy to go places I "should" have gone or deal with have conversations that required a lot of energy.

People made comments to us about having our priorities in the wrong place as I kept working, but didn't attend church. I HAD to work. Even though we have wonderful insurance, copays add up fast. Plus we have six kids. Kids are expensive. Rob couldn't work two jobs and run the house and take care of the kids. We needed the money. Also, attending church emotionally crushed me due to the reactions of others. My clients had no idea what was going on and the people at work who knew about it reacted in ways that helped, rather than hurt. I guess working with a bunch of therapists was helpful in that area :)

Other judged me because I worked, but slept  most of the time I was home with my kids. I had one doctor tell me off for continuing to work, telling me I was cheating my kids out of something vital. SHE had quit her job and stayed home with her kids and it turned out to be what she needed to do, so of course it was what I needed to do. I didn't know how to respond to her, but fortunately didn't have to see her very often after that. I'm glad she was able to figure out what was best for her, but that was not best for me. As I mentioned before, we needed the money. Also, we have half a dozen young children. I didn't have the energy to do the things they wanted to do. All I could do was sit and cuddle them and read to them or watch TV, which I did. But they didn't want to do that all day and I didn't want them to do that all day. Our babysitter did the things I used to do that I wanted them to experience. She took them to the park and played outside with them and taught them to bake cookies and made playdoh and did arts and crafts with them. Rob and I put a lot of thought into me working and it was the best balance for us. It also helped emotionally for me to work. I couldn't do many of the things at home that I had done. I couldn't do the laundry and organize the clothes and toys and clean the house. I still could do some things - like balance the check book and pay the bills. And I cooked some nights. At home, I was surrounded by things I wanted to do and couldn't do. That is hard. At work, I could sit for hours and talk to clients and see that I was helping them, and on top of that, I could make enough money that Rob didn't have to work a second job and was able to stay home with the kids at night and on the weekends.

One of the very hardest things for me was watching people that I hadn't seen for a while as they noticed the differences in me. I was never in denial about what was going on with me. I always took my meds and watched my diet and went to my treatments. But I avoided thinking about it unless I HAD to. Also, as we learned about what was going on with me, we learned in stages, so it built up gradually, with big hits when I'd have a doctor's appointment or get test results. Maybe it was worse because I read people for a living, but some of the worst times for me were watching people who had known me before I got sick as they saw just how sick I was. That brought the sides of my carefully constructed box that I kept this issue in crashing down. This is in no way saying any of them did or said anything mean, but it was really hard for me to live through. I'm sure it was really hard for them to live through too.

Which brings me to something else I had never thought about before going through this - how this influenced Rob and the kids. I think the beginning of my illness was much harder on Rob than it was on me. The meds they were starting me on were so strong, that I slept through most of those months. Rob had to go through suddenly losing me, almost like having me disappear into a coma. He had to deal with the kids' questions and fears and he suddenly had to jump into being both mom and dad. And he did all of this not knowing when my heart would decide to give out, taking me away permanently.  I don't know what else to say about that. That part makes me hurt more than anything else I've typed.

Another thing you don't hear about is the time you lose. I remember a friend telling me that she had to go to counseling after battling cancer for two years because of the overwhelming grief over the loss of those two years. There are so many, many thing I missed that I will never get back. I don't remember Laura's first words or first steps. I missed holidays and birthdays and milestones. I lost the person I was - I don't think most of my kids even remember that person. Laura is so used to me sleeping that when she sees me, she always responds with "Mommy! You woke up!" I know I gained so much going through this and I wouldn't go back and change it, but the price is very high.

Stress Test Results

My new cardiologist decided he needed to see how my heart functioned on it's own and what specifically was working and what wasn't. He took me off my primary medication for 48 hours and did a regular echo and then a stress echo.

An echo is an ultrasound of my heart. A stress echo measures how your heart functions when your heart rate is raised, so they put me on a treadmill and got my heart rate above 156 beats per minute, then had me lie down and quickly did the echo before my heart rate slowed.

The first echo (non-stress), showed what every echo I've had has shown. My ejection fraction (EF - the percentage of blood pumped out with each heartbeat) was 45%. (Normal is 65%, although as long as it's about 55%, it's considered within normal range. Once you get down to 35%, you have to take blood thinners because your blood starts to clot.) This doctor showed me exactly how my heart was working. Your heart is divided into four  chambers by muscles, and with each heartbeat, the muscles on the outside of your heart contract, while the muscles on the inside expand, making each chamber much smaller and forcing the blood into either the next chamber or into your body. The muscles on the outside of my heart were contracting, but not as much as they should. The muscles on the inside weren't expanding nearly at all. He showed us the top view of one of the chambers of my heart, and we could see the thin light gray circle of muscles contracting during each heartbeat and the big black pool of blood in the middle. It was nice to be able to actually see and understand what was happening.

Then he brought up the results of the stress echo. He told us that during that test, my EF was 65%. My heart worked perfectly. He brought up both results so we could see the difference. The biggest difference was the view of the individual chamber. The first echo had shown a pretty thin gray circle and a huge black pool in the middle; the stress echo results were completely gray (meaning the whole muscle was working).

He thinks what I had was actually viral cardiomyopathy and I've healed from it. The medications I'm on are so strong, it didn't show up when I healed. The side effects I've experienced in the last several months have been from the medication. The medications slow my heart down, so every time I would be active enough to get my heart working, the meds would shut it down.

I can't just go off the medications. It took them six months to get me up to the doses I'm on, and that was rushing it because I was doing so poorly. It's going to take him 6-9 months to get me down to the doses he wants me on. Because of how this has affected my heart, I will have to take low doses of my two primary medications for the rest of my life. I will never be back to where I was before this happened, but I've been functioning at 5-10% of what I used to be, and stepping those medications down should allow me to get a significant amount of my energy and abilities back. We don't know what our new normal will be, but at this point, functioning at 75-80% of where I used to be would be an amazing blessing :)

After my first appointment, he took me completely off one of the three medications I was on for my heart and my energy levels jumped to about 20%. After this second appointment, he halved the medication I'm on the highest dose of and my energy levels have soared (for me - I'm still probably only at 30-40% of where I used to be, but it's better than I've felt since before I was diagnosed).

Granted, feeling that much better led me to push myself all week and I've crashed three times so far today, leading Rob to sigh and roll his eyes because I can't do anything halfway :) He's told me I need to stay in bed tomorrow. *sigh* I'm not good at taking things slowly.

I can tell I'm getting better because I'm noticing all the things I want to change around the house. Rob says having me feeling better is worth having to clean like I used to clean, and replace the dining room table and couches, and rearrange rooms, and redecorate. We'll have to see if he still thinks that after I actually start doing those things instead of just talking about them ;)

I'm not sure it's really sunk in yet for either of us. We've told the kids that I'm getting better, but it's going to take 6-9 months for me to get there. It just feels so weird. The hell and heartbreak we've spent the last two and a half years going through are over. This is not going to kill me. I'll get to watch my kids grow up. Rob and I will have a chance to do the things we've always wanted to do as we grow old together. I get my life back. I get to be able to do things with my kids and Rob and my friends.

I can now officially say I'm a heart disease survivor :)

I think I'm going to start working towards running the Boston Marathon :)

Heart Update - 2nd Opinion

I haven't posted updates because it's  been hard to talk about.

In February I went back to my cardiologist. He did another echo and told me that my EF is still at 45%, which is what it was when I was diagnosed. I had gotten much worse and while they managed to improve on where I had been at my worst, I haven't gotten any better. He said there was nothing else they could do for me except to just keep checking it, have me stay on my meds, and wait for it to get worse so we had to take more drastic measures.

That was really hard to hear, so we didn't talk about it to very many people.

We've been planning on getting a second opinion for a while, but finally made it into another cardiologist's office today.

I was misdiagnosed. I don't have postpartum cardiomyopathy. He says we'll never know for sure what caused my heart failure, but it was probably either medication (the meds I was put on during my pregnancy with Eva) or a virus (if you've ever seen the movie "Beaches", that is what Barbara Hershey's character dies of).

Cardiac rehab is usually pretty successful with those issues . . . if done in the first 3-6 months after the condition develops. We're two years past that point (although if it was the meds from my pregnancy with Eva, then we're four years past it and it wasn't discovered until it was two years too late). At this point, not only would my insurance not cover cardiac rehab, but it wouldn't make a difference.

EECP was a huge waste of time because it doesn't even treat this type of condition and I shouldn't have been sent there. Those seven weeks were hell and it took me weeks to recover from that and now I find out that I shouldn't have had to go through any of it.

He thinks my PVC (when my heart would contract before filling up with blood, making me skip every third beat) was actually caused by low potassium levels that were due to being on lasix. The medication I was put on to treat the PVC makes you retain potassium, so it just balanced out the effects of the lasix. He took me off that med (I stopped using lasix months ago because of my reaction to it).

I'm going back next week for a stress echo and he's taking me off my beta blockers (the med I'm on the highest dose of) for 48 hours before the test. He is checking to see which parts of my heart are not functioning correctly. He's also checking to see what my heart does when I'm active as opposed to at rest. This will let him know what dose of the beta blockers I actually need to be on. My previous cardiologist didn't consider any of those questions.

Hopefully all of these things will help improve my ability to function. The bottom line is the same though. This isn't going to get better. The damage is now permanent. This new cardiologist is fairly confident that if we stay on top of it, he will be able to maintain my current levels for quite a while. We're fighting for time and we're trying to improve my quality of life as best we can.

Now I just need to figure out how to adjust to this and put a positive spin on it, because that's what I do.

We've adjusted so that I no longer have to do many physical chores around the house. I have a job that has very low physical requirements. The older two kids will be home next year (long story - they will be attending an online charter school), which makes it easier for me to sleep in or rest when needed. Almost all of my symptoms didn't show up until after I started medication, so maybe they will decrease significantly if my medication levels are decreased.

I wish this would go away, but I don't wish it never happened. This has been one of the hardest things we've ever gone through, but it has made a huge difference in our lives. It has forced me to stop doing everything for everyone, which not only allowed my kids and Rob to have the chance to step up, but also taught me to start letting people do things for me. It's really hard for me to let people in and that is something I am still working on. It reset our priorities and forced us to figure out what was important.

I wouldn't pick for this to continue. I keep hoping that somehow magically I will be able to heal from this. I know that the human body is so complex that the best the medical world can do is make an educated guess and that anything is possible. They told us we could never have children and we had six in ten years. Rob says the best way to make me do something is to tell me I can't do it.

All that being said, if this doesn't magically disappear, I'm sure years down the road I will be grateful for the lessons I learn from it. It sucks, but if it had to happen, I'm so glad it happened now. We got to have six amazing children (my heart won't make it through any more pregnancies), I have my degree and a job that I love that I can still do even with my heart, Rob has a job that has really good insurance and benefits and that can totally be left at the office. I have amazing friends who love me and are happy to be able to help me.

One of my friends on facebook posted a link to something written by a woman who's husband was killed a month earlier. Towards the end of the post, she stated "Option A is not available. So let's kick the $&^% out of option B." I can totally do that :)

I shared my emotional first aid kit with my women addict's group this week. Part of it was a poem I had on my wall when I was in college. It seems to apply here.

God,

Before He sent his children to earth

Gave each of them

A very carefully selected package

Of problems,

These,

He promised, smiling,

Are yours alone, No one

Else may have the blessings

These problems will bring you.

And only you

Have the special talents and abilities

That will be needed

To make these problems

Your servants.

Now go down to your birth

And to your forgetfulness, Know that

I love you beyond measure.

These problems that I give you

Are a symbol of that love.

These monuments you make of your life

With the help of your problems

Will be a symbol of your

Love for me.

Your Father.

~ Blaine M. Yorgason

Getting Back Into Things

I keep waiting to have time to actually catch up on everything I've missed, but that never seems to happen. If I don't just jump forward to where we are, I don't think I'll ever post again. 

A friend posted this on facebook and I thought it would be fun to see how the kids answer :)

Without any prompting, ask your child the following questions, and repost exactly what they say:

1. What is something mom always says to you?
Megan - Don't lie
Kylie - Clean up
Beth - Help Megan and Kylie babysit
Jack - Don't fight
Eva - Do not have an accident (potty)

2. What makes mom happy?
M - Being a mother 
K - Spending time with us
B - When I get good grades, which is usually
J - When I don't get in fights when she's gone
E - Babies

3. What makes mom sad?
M - When I fail classes
K - When we're hurt
B - When I don't clean
J - When I get into fights
E - When I have an accident (potty)

4. How does your mom make you laugh?
M - By teasing Daddy
K - Tickle me
B - Say "don't smile"
J - When you tickle me
E - Tickle my feet

5. What was your mom like when she was young?
M - A lot like me
K - You didn't watch TV 
B - Smart
J - Like Beth
E - You wore necklaces

6. How old is your mom?
M - 37
K - 37
B - 38
J - 34
E - 11

7. How tall is your mom?
M - 5'10"
K - 5'5"
B - 5 feet and something
J - Almost the size of Daddy
E - Huge

8. What is her favorite thing to do?
M - Hug Dad
K - Take care of us
B - Spend time with us
J - Spend time with us
E - Make cookies

9. What does your mom do when you're not around?
M - You talk to abused people and try to help them at your therapist office
K - You work
B - You do what you do
J - I don't know because I'm not around
E - Go to work

10. If your mom becomes famous, what will it be for? 
M - Being Supermom - you can juggle six kids, a career, and a failing heart
K - A cooking show
B - Singing or a cooking show
J - Being the best mom
E - Painting

11. What is your mom really good at?
M - Singing
K - Taking care of us
B - Being a mom
J - Being a mom
E - Painting

12. What is your mom not very good at?
M - Not protecting us
K -  I can't think of anything
B - Being a bad mom
J - Being a bad mom
E - Let me think . . . 

13. What does your mom do for a job?
M - Therapist for drug use
K - You're a therapist and a stay-at-home mom
B - You're a therapist
J - You're a good mom
E - To drive and to cook

14.What is your mom's favorite food?
M - Lobster
K - Soup
B - Lobster and Greek food
J - Shrimp
E - Lobster and salami and fruit and bacon and bubble gum and candy

15.What makes you proud of your mom?
M - That you're a good mom
K - That you're my mom
B - You're a great mom
J - When you get us presents
E - 

16. If your mom were a character, who would she be?
M - Belle from Beauty and the Beast because you're pretty and you sing really pretty
K - A mom on a show
B - A mom on a show
J - Supermom
E - A supermommy hero

17. What do you and your mom do together?
M - Go shopping and do mani-pedis
K - Go swimming
B - Hug
J - Mommy dates
E - Wrap presents

18. How are you and your mom the same?
M - We have a lot of the same traits like the same eyes and the ability to talk to our dads a lot
K - We both have dark brown hair
B - We're both smart and we both get A's a lot
J - We are both in the same family
E - We are in the same family

19. How are you and your mom different?
M - You were an A student, but I've been struggling with my classes
K - You're older than me
B - You have thicker hair
J - You're a girl and I'm a boy
E - Because you're good at taking care of all of us and I'm good at taking care of Laura

20. How do you know your mom loves you?
M - Because you tell me every night
K - You tell me you do
B - You're always there for us and you congratulate us
J - Because you do mommy dates and you treat us like we're very important
E - You're always there to take care of us

21. What does your mom like most about your dad?
M - The fact that he almost never gets mad at you
K - His beard
B - He's nice
J - He's her husband
E - His glasses and his hair

22. Where is your mom's favorite place to go?
M - Home with your family
K - Home
B - Anywhere that we are or that your friends are
J - Home
E - Going to Miss Jojo's house with us

23. How old was your Mom when you were born?
M - 23
K - 26
B - 28
J - 30
E - 01

Pre-Christmas

Still playing catch up - I'll get there eventually :)

Kylie had a Christmas choir concert. Rob and Beth went as I was working. Megan babysat Laura and Jack. It still seems odd to me to miss things like that. I'm so glad Rob gets to experience them though!

Rob also ran solo the night they put up the Christmas tree, which was really odd as he usually participates very little in that process. He did an awesome job though and the kids had a blast :) We went with a fake tree this year for the first time ever. I prefer real trees, but the main reason I want one is for the smell. Only certain types smell strongly and those are the more expensive ones and we are too cheap to spend that much money just for the smell. The fake one was easier to put up, significantly easier to take care of, and much easier to take down. I may just settle for Christmas tree scented candles from now on.

We always let the kids open one present the day before Christmas Eve. This year I had to work late that day (sensing a theme here?), so we did it a day early.

Laura picked up a new response to presents from somewhere. She gasps and covers her mouth with her hands. It makes giving presents so much more rewarding! We love it :) She only does it for a second though, so I only got one picture of it and that picture was blurry.

Laura got a musical Leapfrog toy that we bought from a friend. She loves music and sings and dances all the time. (I try to get it on video, but she stops when she sees people paying attention to her.)

Eva, the ultimate princess girl with an attitude, got her very own makeup kit, complete with a mirror and lights.

She wasted no time trying it out. Her results tend to be a bit more . . . dramatic and colorful than I think she realizes, but she loves it. It goes right along with her tutus and high heels :)

Jack decided to open his present from Jojo and Dan. I loved the fist pump, especially as Jojo took all the kids out and let them pick their own presents, so he already knew what was in the package.

Beth got a Hello Kitty stamp set. She loves Hello Kitty and loves creating things, so it was perfect for her!

Kylie decided to open her present from Jojo and Dan as well. Knowing what the present was dampened her enthusiasm about as much at it had affected Jack's. (Notice her shirt? Rob picked out a bunch of t-shirts for her and she now regularly sports t-shirts featuring musicians that she has never heard of, but that Rob likes.)

Megan got a rubber band loom, much to her delight. She had hinted about it enough that we would have had to be as dense as a rock not to know it was the top item on her list. We also got her 6000 extra bands and some charms and hooks and other stuff. Good thing we got so many because as of now ( two months after Christmas) she has made a grand total of three small bracelets.