Wednesday, January 18, 2012

The Year I Spent In A Room Not Complaining (Finding the Amazing in the Suckiness)

SO, in my first post in this now two-parter, I did a lot of focusing on the bad events and painful things going on since my health took a nose dive a year ago.  In all honesty, I feel like a huge weight was lifted in making more public many of the issues with my illness and those events, so it's out there and I don't have to put on a happy face if I'm struggling.  I am usually coping fairly well I think, and most days I'm a happy camper and have accepted my situation and am trying to deal, but there are days when I now allow myself to feel crappy and cry and be upset and I don't feel guilty about it because "there are others worse off".

My day to day life is definitely not miserable, and though I do struggle, I'm usually a pretty happy silly person.  I deal with anxiety and fear by making jokes.  They may not be good jokes, but I like laughing and seeing others laugh, so I try.  Anyone who knows my Dad knows where this comes from, I grew up with an earful or corny joking (see what I did there???).  And my life is truly filled with many reasons to be thankful, many of which would not have been possible without the downward spiral of last year.  I already mentioned my mantra: "I do not have cancer. I do not live in a hut. I am not in the Congo. I have insurance." and I repeated things like that multiple times a day, sometimes hourly.  And they are true. And they kept me grateful, and sane (kind of sane at least) through most of this whole thing.

But the most incredible thing to come from this whole experience is my daughter.  She is our miracle baby, in every sense of the cliche phrase.

When the blood clots first happened, and I was laid up with POTS, I was unable to much of anything and was getting IV fluids continuously.  The doctors said they didn't know how the pregnancy would go, and there was no way to predict the outcome.  But most likely, the baby would be fine, but there was a good chance I would be in bed and impaired most of the time.  I should not consider having any more babies.  Turns out I have a genetic predisposition to clotting (which had never been an issue through 2 surgeries and another birth), but combined with my POTS and the current DVT's, future babies would be dangerous.  I think I was about 9 or 10 weeks along.  This was the first time a doctor said to me, "why are you doing this to yourself?" and "are you sure you want to continue the pregnancy?".  I was told it would be inconvenient, not life threatening at that point, and all I could think about was my son.  Yes, I may have to be in bed for the next 8 months, but they thought I would feel much better in the second trimester (wrong). Yes, I may get worse before I got better.  But the baby should be healthy and I would survive.  If someone had told me that I had to stay in bed for 8 months to save my son's life, and be sick, I would do it. No questions asked. Period.  Most parents would die for their kids, and I am no exception.  And why was she any different, because she was only 10 weeks old?  This is not a pro-life rant, but these were my real thoughts at the time, and that's what I told my doctor.  I'm not going to get into my personal beliefs or get super spiritual and start quoting the Bible.  Because that honestly didn't affect my decision.  Maybe it should have, but at that point I was not feeling all that spiritual, and was pretty pissed off and in shock at the magnitude of whole situation, and I let others do the praying for me.  But I knew that I loved my son, and his sibling would be a lot like him, and that made it worth it.

Then we found out I had the huge clot in my heart and the embolisms.  After being diagnosed with the initial DVT's (blood clots in large veins), I was sent home even though I couldn't breath and was having major chest pains.   They told me it was probably just my POTS.  No one listened when I told them this was different, and I felt like I was being strangled and suffocating.  So after 2 trips to the ER, and threatening to pull out my own PICC line because I was in so much pain, they finally decided to do a test called a VQ scan. This involves injecting IV radioactive material into the bloodstream that goes into the lungs, and they can see if your airways are working and if clots are present.  It's the safest test during pregnancy, but once they told me that they needed to put a catheter in to get the radioactive material away from the baby as quickly as possible, I refused the test.  The uterus is next to the bladder, and the thought of radioactive material chilling next to my 10/11 week old in her super important first trimester developmental stage did not sound good to me. But the doctor convinced me that if I did have embolisms I could die right along with the baby, so I said yes.  I hadn't realized it was that serious, but they were finally very concerned.  So I got the scan, and that's when all hell broke loose.

I had over a dozen clots (embolisms) in both lungs. NOT GOOD. I won't go into details, but after 36 hours in the ER being told not to move my legs for fear of more embolisms, waiting for a bed at Norfolk General, and with no further scans (booooo), I was finally moved.  They then finally scanned my legs (no clots thank God), and my heart, and found the clot in my atrium.  The OB docs and my internal medicine doctors freaked out.  They told me they may have to use those crazy dangerous clot busting drugs (different from blood thinners), and that I would have to terminate the baby and I could bleed out from the drugs and die as well. No thank you!  My cardiologist stepped in, and said that was not necessary, that blood thinners were just fine, and it was no big deal.  That the clot was small, maybe nothing based on the echo he reviewed, and wasn't anything to worry about.  So after terrifying me and my family, everyone (I had a lot of doctors at this point) backpedaled, and calmed down.  But the fact remained that I was flat on my back, could hardly breath or move, and was in incredible pain.  The doctors once again asked how "committed" I was to continuing the pregnancy. That there was real danger now, and I would have a complicated birth, but it would probably not be life threatening.  I kept asking if I would die (that's a fun question to ask), and they said no.  And they kept doing ultrasounds, and I saw that little baby in there, and thought about my son, and kept telling them that my son and husband needed me alive - so if I'm going to die by having this baby, I have to come first, especially since she would end up dying as well (babies can't live outside the womb until 23 weeks).  But if its just going to suck, that was MY baby in there, and her heart was beating, and I'd do anything to save my son...and I knew that she would be just as important and I would love her just as much.  At that point she wasn't even a "she", and I wasn't showing or feeling the baby move.  But I had seen her little profile, and seen my son progress from a clump of cells to the amazing boy he is today, and I knew I wanted to meet that little thing in there.  So if it was just going to suck, I could handle it.  Thank God I didn't know how much it would suck, or how bad the clot really was, or just how bad it would get. I actually asked my internal medicine doc what she would do, as I had gotten to know her a bit over the weeks I was there, and knew she had young twins. She said if it was her last chance to have a baby, like it was mine, she would go for it.  I agreed. 

In hindsight, my overly simplifying cardiologist (that I later fired) probably saved my child's (and maybe my) life.  He was wrong.  The clot in my heart was BIG, and it was dangerous, and I didn't find that out until I got to Hopkins a few weeks later. I then went through the same process - they did a scan, said the clot was 2 cm's inside my right atrium, and that it was a big deal. I was shocked.  They told me again that I may die, that at any moment it could break off and kill me.  That they may have to use those clot busting drugs, and I would have to "terminate" the baby. I was 14 weeks pregnant at this point, and was actually showing, and felt horrible, but had gotten used to the idea that I would most likely improve in the second trimester, and was having a baby.  This was again devastating. This is the point when my doctors suggested anti-anxiety meds in small doses.  Knowing you have a giant clot in your heart that could break off at any point and kill you makes it hard to sleep.  I am usually pretty good at compartmentalizing issues and dealing, but this was a bit much.   I actually was still having more embolisms (emboli?) as well, I would get a stabbing horrible pain in my chest, hit that button for the nurse, and start praying.  Luckily, none were life threatening, they just hurt and were scary as hell, and were very stressful.  I was pretty angry that my previous cardiologist had blown off the clot, I had a fancy MRI of my heart done, and that thing was big.  I should have named it.  Stevie the DVT, or Scott the clot.

Anyways - while at Hopkins they started me back on meds that were known to possibly be harmful to the baby, and medicines that are called "Class C', where they just have no clue what happens to the baby (which scare me even more). I had numerous chest X rays, MRI's, CT scans, and passed out somewhere in the ballpark of 60+ times.  I fell, I had crazy heart rates, low and then high blood pressure, and all kinds of fun symptoms. And she survived.  And not just survived - but she is a super healthy, funny, adorable little girl who is surpassing all those "milestones" at light speed.  I think all the radiation may have made her a superhero!  She is a superhero to me at least.  And not to brag, but I think I have a magic uterus.  We are just blown away by how amazing and healthy she is, and we know that God was watching over all of us.  It's a shame there will be no more babies!  I do get a bit sad at times thinking about that, but when every doctor you see asks multiple times if you are planning to have more kids, and says, "please please do not get pregnant ever again!", or my favorite, "I will tie your tubes for you!" it becomes more funny than sad.  I'm quite happy with my two munchkins, and feel no desire to reproduce ever again.  If we want more kids, we will adopt, there are many many kids that need homes.  I do not have Duggar-itis. Gabi was the final baby to call my uterus home - and she is truly a blessing.

Lukas and I (pre-2011)
So in no particular order, some of the other awesomeness that occurred (great English, I know) was/is that my son seems to have adjusted and pulled through quite well, and is an amazing little guy.  He is thriving at preschool, loves his friends and teachers there, and he loves going and learning.  He is a joyful, funny, affectionate, smart boy who now orders me into my wheelchair to come play with his trains (because Mommy makes awesome train tracks).  When I wear anything other than PJ's and sweats, he tells me I look like a princess.  He tells me he loves me constantly.  I love hearing his little voice in the morning as he bounces into my room and says, "Mommy, you awake? Time for cartoons in your bed!" He helps Daddy with his little sister when they go out together.  He dotes on and brags about his little sister constantly, has not been jealous at all, and loves that she lights up and smiles when she sees him.  The past year was tough on him, I'm glad he was so young and will hopefully not remember much of it.  He calls ambulances "Mommy's car", and used to cry hysterically when they would take me out of the house by stretcher.  At one point we started having my husband take him out of the home and away so he wouldn't see me being carted off.  He now understands (after I have been home for the last 4 months or so) that Mommy just has to go to the doctor, and will be back soon.  He even high fives me on the way back inside from appointments while I'm being wheeled in on the stretcher (I still go everywhere by medical transport).   He is a resilient little man, and seems to have bounced back and feels secure again in our new ever evolving life.  He still calls my name and comes straight to see me when he gets home from any outing, checking to see if I'm still here, but hopefully that will pass as he gets older and understands more of what happened.  Even though I like the extra attention from him :)

My husband is pure awesomeness.  Yes, he can be a grumpy German, but I am constantly amazed at what he does for me and our kids.  I have gained a whole new respect for him throughout this year.  It hasn't been perfect, chronic illness can be the true test of a marriage.   But he is our family rock, and he has not let us down while we all depend on him.  He is an incredible father, and functioned as a single Dad for most of the year.  He potty trained our son, let him sleep in his bed to feel safe while Mommy was away, and got him through the transition of moving and starting a new preschool.  Many spouses can't handle the stress of not only an illness, but the financial burden, the sacrifice involved, and being a caretaker.  And lets face it, any of you that know me personally know that I am an opinionated, type A, art brained, strong willed woman - and that in itself is a challenge.  He has picked me up off the floor, carried me to the bathroom, and stuck with me through this when many would have left.  He works all day teaching with only a 10 minute break, is dedicated to his students, and has even orchestrated a triathalon club for his school.  He then comes home and does not stop until we are all in bed.  His weekends are no break either, and we are always playing catch up with housework, cooking, and taking care of the kids (and me).  He is not always a man of words, but his actions this past year have amazed me, and I am forever grateful and in awe of his strength and commitment to our little family.   My son knows that Daddy is there for him, especially when Mommy can't be, and my daughter already grins when she sees him and reached for him for the first time the other day (I was totally jealous!).  I really scored a good one, and am eternally grateful to him.

My family has of course been amazing. I say of course, because my family has always been amazing.  I am very lucky/blessed to have incredible parents, a great younger brother, amazing grandmothers, and aunts, uncles, and cousins who have all been super supportive both emotionally and financially.  My mother and brother in law have been incredible as well.

It just seems wrong that my parents have had to help care for their sick adult daughter, and I know it has been tough for them to see me this way.  They have known me the longest, and know my spirit, and have been on the front lines with us through this whole thing.  I'm very close with my parents and brother, and talk to them constantly. They are my cheerleaders, my prayer warriors, my advocates, and have dropped everything to come be by my side every time there has been an emergency (and that is quite a few times).  They drive down from DC at the drop of a hat to take care of me, my kids, my dogs, and sometimes even my husband. My Mom stayed with me for 6 weeks (and my Dad came down on and off too) after the baby was born.  My in laws make frequent day trips, and take time out to some help out with the kids and around the house.  Our entire nursery is outfitted by family, and my grandmothers, aunts, uncles, and cousins have been insanely generous and showered us with gifts and visited as much as they can.  I can never thank them or the rest of my family enough, we would not have pulled through without them.   I'm super excited that my parents and grandma are moving down here in a few months, I can't wait to see them in a non-emergency or holiday situation!

Another amazing result of this past year has been the outpouring of love and support from not only family, but people I have not seen or communicated with (except on Facebook) in years.  Not only were people praying for us, they had entire congregations praying for us that we have never attended.  This meant so much to me - as I mentioned before, I had semi shut down - I think as a coping mechanism, and needed others to do the praying for me.  And boy did they ever!  It made me and my family feel incredibly loved from afar.  We have also had random anonymous donations of brand spankin' new baby items from Freedom Fellowship, friends of my family giving us clothing and supplies, my husband's department and school have given us a TON of toys, clothes, gift cards, and money.  They even held a fund raiser last year, and have been supportive through the entire situation.  I can never thank all these people enough, because I don't really know them!  And now we have been raising money for a van, and I have no clue who half the people who have donated are.  My husbands 15 year old student donated his entire bank account, a whole $1.  I cried, I thought this was the most touching thoughtful thing - to have a random high school kid give his last dollar (he later told me husband) to help us out.  It has been amazing, and taken some of the sting out of the whole being a charity case thing.  Old friends from my teenage years have given us a laptop, sent care packages and random gifts, and have been cheering me on as well.  My colleagues from the wedding industry cooked dinners for my husband and son, and sent goodies and beautiful flowers and orchids to hospital, as well as gifts for the kids.   The thoughtfulness has been amazing, and I am so grateful.

There are many more amazing things that have happened in the midst of this hellish year, but the last one I want to mention is the bigger picture.  There has been a major redirection in where my life is headed through the events of this year and my illness flaring up so terribly.  I had been a complete slave to my business(es) for many years, and though I loved what I did, it was insanely stressful and all consuming.  I was always torn - never able to devote enough time to the business because my son and husband came first, but in reality sacrificing time and mental energy and having my business run me.  I was constantly stressed out and had a never ending to do list, and it was exhausting.  I had long stopped doing things I loved - like painting, going out to socialize, gardening, even reading and keeping up with topics I feel passionate about, because when I was not working, I wanted to spend every last minute with my family.  And I had POTS then too, so I would run out of energy after working so hard, and many days barely make it through.  I now have the chance, once I'm feeling better, to hit the reset button. I can not only spend time with my family, but maybe finish my masters degree, or get back into those hobbies I love.  I may have to do them differently, and adapt to my new limitations, and we are living without that lost income - but I would much rather see my kids grow up, have a life, and work if I'm lucky to be well enough to do so - without feeling like a slave to my business. I'm trying to look at this a new beginning, and once we get a firm diagnosis and the cause of my POTS figured out, I can move forward with treatment and start really living again, just differently.  But I will start living again, even if I have to rig a catapult system to get me off the balcony and out of this house - there is too much passing my by right now, and I will not be defined by my illness.

POTS will be MY bitch in 2012, not the other way around.
Watch your back POTS, I'm coming for you.


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