Invisible Illness, Race and Flipping the Bird

This last month has been rough.  ROUGH.  We are navigating through some difficult times and trying to make some hard choices.  Choices that are meant to better my health and our family… but they are breaking my heart.  And forcing me to accept more of my limitations.   But we have had a lot of help and support from family and friends and Debbie is learning to deal with and her downs. 

And right now I just don’t even want to talk about it.  This is what I wanted to talk about.

Judging.  No one likes to be judged.  Period. 

Am I right?  How many times have I heard, “Don’t judge me?” or “Stop judging me.”  But we all do it.  Sometimes we have to.  It’s important to judge whether or not it’s safe to go into certain situations.  But, myself included, we do it so often when we have no cause.  When it only tears someone else down.

I’m sure each of you is thinking of a specific time when you were wrongly judged.  Another interesting aspect of POTS is its invisibleness.  I will admit that most of the judgment I feel is self-inflicted.  I have always been and will always be my own worst critic.

However, there have been occasions when I have been criticized by others.  There was one instance in particular when I was in public with my 3 kids.  It was very hot and I was at a high risk of passing out.  I just needed to get one child to where he needed to be and get out of there.  I had to make a difficult, on the spot choice about how to handle the situation in order to keep all 4 of us safe.  A total stranger objected to my strategy.  She blocked my path and lectured me… threatened me!  All the while I was standing in the heat, unable to even respond because I was getting more and more dizzy.  When we were safely in our van with the a/c going I couldn’t stop the tears.  I couldn’t drive or talk for a while until the dizziness passed, and my younger 2 children were very frightened because I wasn’t responding.

This complete stranger had made a snap judgment.  She thought she knew better.  She thought she knew a safer way.  But she didn’t know the invisible world of POTS and how dangerous her way was for my family at that time.  She didn’t know the incredible danger that she placed me and my kids in by lecturing me in the heat.  

I am often surprised by face book posts.  People at times essentially brag about how they have judged others.  I will give one example.  (If this was you, please don’t be offended!  I don’t even remember who it was, I just remember the gist of the post.)

The post said that a lady had left her shopping cart next to her car, rather than taking it to the cart corral.  It accused the person who left it of being lazy and not caring that the cart could do damage to other vehicles.  So the poster had used his/her own vehicle to push the cart into the ladies' car! 

And I thought, “how do you know she was lazy?!”  That could have been me!  99% of the time I return my cart.  But there are times that Walmart Phenomenon is so severe that I can’t make it from the cart corral back to my vehicle without the support of the cart.  And I have left it by my van.  There are times that the heat is so intense that by the time I load the groceries into the back of the van I’m already becoming presyncopal.  And I leave the cart by my van.  And then I sit in the van for 30 minutes until the ice cream melts and I can drive safely. 

Do I deserve to be called lazy and have my van damaged by someone pushing the cart into my van?

Trust me, I do enough damage on my own.  About a month ago I was driving home.  I had felt OK.  A few miles from home the lights of the other vehicles really started to bother me a lot more than usual.  As I pulled into the garage I knew I wasn’t quite right.  I put the van in park.  I looked around and I couldn’t tell if I’d parked correctly.  I was almost certain I’d pulled in far enough, but since I felt so weird I pulled forward a couple more inches, just to be sure.  I hit the button to lower the garage door and crack!  The door hit the back of the van and now there is a very noticeable 3 inch scrape on the back of it.

At times I’m incapable of judging things I should be judging, like depth!  Even though I look perfectly healthy and normal on the outside, no one would be able to “judge” this about me.  People can’t tell by looking at me what is going on and therefore they are not equipped to judge.  Just as I am not equipped to judge you.

And don’t even get me started on the judgments that come from being a transracial family.  Those judgments go both directions.  We are either horrible, glory seeking people or saints.  Neither are appropriate or true.  And the fact that my beautiful daughter will be subject to judgment that I am exempt from, that I have never experienced and therefore have no foundation for how to help her navigate through… heartbreaking.

So clearly this subject doesn’t just apply to POTS, invisible illness and race.  Just because some guy cuts you off in traffic and flips you the bird doesn’t mean he’s a jerk.  Maybe he was just served papers for a divorce he doesn’t want.  Maybe the weight of his world is crashing around him and for a brief moment he took it out on you, a total stranger.  Does that make him a jerk?  No.  Does it make him human? Absolutely.  And guess what.  So are you.  And so am I. 

Being human also makes him a child of God, a child of the King.  We all are.  If only we would start giving each other the benefit of the doubt.  What if instead of saying, “What a *@*#!”, we said, “I wonder what invisible problems are overwhelming him today?”  And then instead of stewing about the bird we’ve been flipped, we pray for the bird flipper.  It may or may not change him, but I bet it will at least change your outlook on those around you.  We ALL have UGLY moments.  Seen or unseen.  And we are all God’s children.  Regardless of whether we behave like it or not.  Let’s treat each other as such and leave the judging up to our Dad.

Grief

In the past I’ve tended toward the conservative side in what I post online.  I mean, the first the face book world knew of me having any medical problems was when my husband posted that I was in ICU needing surgery due to my new pacemaker puncturing my heart causing bleeding into my pericardium.  So this is all kinda new and awkward for me.  And this here is raw and I feel really exposed posting it.  It’s a total Debbie Downer.  (Bet your dying to read on now!)  But I also believe that those of us with POTS and Dysautonomia need to open ourselves up.   Then perhaps, people who are fortunate enough to actually get a diagnosis won’t continue to be told, “It’s only POTS”.  Perhaps they’ll be better informed from the start about what they are facing.  So here goes… Debbie at her worst.

Grief.  It isn’t only limited to death.  And it can sneak up on you ever so slowly or pounce suddenly.  Either way, it’s crippling. 

I always push through.  Life has been incredibly stressful for the last 6 years for many reasons.  Blessed but very high stress.  Even before Dysautonomia hit me, it was very hard to keep up.  Life was stressful and intense even when I was healthy.  I have a wonderful husband and 3 precious children.  But our family also has special challenges that are physically and emotionally exhausting to us all. 

I started having health issues 5 ½ years ago that were mild.  The last 2 ½ years they have really escalated.  But I always push through.  I’ve always prided myself not only on hard work but fast work, accomplishing a lot in a short period of time.  Now I am so slow to accomplish anything, but I push.  I do all I possibly can.

Yet with all the special challenges in our home and my health and physical limitations, nothing has crippled me like grief.  It snuck up slowly and then paralyzed all at once.  I’ve mentioned before a quote from the book POTS Together We Stand.  It talks about the small and big losses with POTS that cause grief on a daily basis.  They cause you to grieve the loss of who you once were.

This week it was one “small” loss that spiraled me downward into grief.  We had a warm day.  A high of 64 degrees in January!  The Dysautonomia has caused small fiber neuropathy which has caused an inability to regulate my body temperature.  So I can’t stand to go out when it’s cold.  I wear layers inside all winter and I still feel like I’m freezing.  So with one warm day and baseball season approaching, I was determined to go out and throw a ball with my son.

What I didn’t figure on was the higher temperature causing a drop in atmospheric pressure, which triggered faster heart rates and a migraine.  By the time we finished morning schoolwork I couldn’t even glance out the window for the brightness, much less go outside.  The kids went out.  I struggled through laundry and fixing lunch.  When I called them in I collapsed on the couch with sunglasses and noise cancelling headphones, waiting for the Motrin to kick in.

And I was devastated.  The one day of the whole winter that I had a chance of going outside with my kids and I couldn’t do it.  That sorrow just triggered all the emotion that I suppress to keep pushing through each day.  I thought of all the ways I am not the mom I used to be, not the person I used to be.  All the ways I feel like I fail my kids.  I thought of our 4^th child that we were never able to adopt, but I still wish for.   I thought of how different all of our lives would look if I were well.  I was overcome.

But I still had 3 kids to finish the days schooling, so I pushed through.  Noah was particularly struggling that day in many ways.  He couldn’t focus.  I said, “Buddy, you did so well doing your school work with Daddy the other day.  How come you were able to get so much done with him?”  With his answer he spoke truth like only a child can, and it was as though all my fears about who I have become as a mother were confirmed.

“Because Daddy’s face smiles when he does schoolwork with me.  Daddy tells me, ‘good job’!  And your face just looks like that (pointing to my face) and you don’t say anything or you fuss at me.”

It was like a knife to my heart.  Who is this person I have become? 

Every day things happen that remind me of my limitations, but this week they just spoke more loudly than usual.  I got a text from my sister who is skiing in Colorado that it was -14 degrees there!  It reminded me of when they first thought that I may have MS.  I got a sudden, strange, definitive thought at that time.  I thought, “Well, if it’s MS, then I’m going on a ski trip this winter with my siblings.”  Sounds weird, but I love skiing with my siblings.  And I had a great trip to Utah with my brother and one sister years ago.  My other sister couldn’t leave her small children at the time.  I wanted to relive that with all of us while I still could.  Well the diagnosis wasn’t MS, it was “only POTS”.  So I didn’t plan the trip or ask my siblings to do this for me.

Well it hadn’t occurred to me yet, until I got that text about the -14 degrees, that I’m not sure that I can ski anymore.  Even if I could medicate enough to keep my heart rate down and breathe well enough to do it, even if migraines didn’t interfere, even if I could balance myself and wasn’t dizzy, temperature regulation is a huge issue.  And now I feel hurt and angry.  Not at anyone in particular, but I guess at the lack of knowledge and understanding about Dysautonomia and POTS.  If I had been given a diagnosis of MS I would have known to go and do as much as I could while I still could.  But with POTS, it’s all so vague.  No one really has a clue.

 And I’m left feeling like I missed my only chance.

So I don’t really have a nice bow to wrap this up with.  I guess I just want people to realize the depth that this illness has to it, especially those in the medical community.  Don’t pass it off as “just Dysautonomia” or “just POTS”.  Patients need to know what they are up against.  I wish I’d been forewarned and had some time to do the things I love to do, at least once more.  I’m still just really sad right now.  There are far more losses than I could begin to write here.  I’m tired of viewing every opportunity and invitation through the eyes of POTS, knowing so many things are not possible or too risky or too energy consuming to try.  I haven’t been able to even talk about it, but I can write.  It’s too raw and tears spill over whenever I try to talk.  

But I know I will eventually come out of it.  In the meantime I am still pushing through and trying to focus on the blessings.  5 years with Carrington this weekend!!  I am so sad that we didn’t adopt our 4^th child, but man, am I thankful we adopted her.  Even in the midst of my grief, I am not naïve to how good I’ve got it in the grand scheme of things.  There is always something to be thankful and give praise for, even if it comes with a lot more effort than usual.

Debbie Downer.  Over and out.

 

Overcoming Wal-Mart Phenomenon

Today I went to Wal-Mart.  With 3 kids.  And Wal-Mart was Wal-Mart.  Florescent lights, long lines, people moving in all directions.  And my kids were kids.  Wiggles, shakes, squeals, spats.  And I... drum roll please (this is seriously big news), did not get dizzy!  I did not feel like I was going to collapse.  I never felt like I was going to have to ditch my cart and leave.  I was able to think clearly and make wise choices.  I even spent less money than usual because of that.  I didn't feel like I needed the cart for balance.  I didn't snap or yell at my kids.  When we went out to the parking lot my depth perception was normal.  I wasn't jumping at every car that in actuality was no where near me. 

Today Wal-Mart Phenomenon did not get me!  (That is an actual term that my neurologist used to describe the weird migraines that occur with POTS in large places like Wal-Mart.)

On the way home the kids screamed and I didn't flinch.  No inappropriate adrenalin rush.  We listened to music.  We not only listened to music but did so at a volume that the kids like  And I like it to!  The alternating light and shadows on the road did not phase me.  I am an emotional person, but even with all we have gone through lately, I rarely cry.  I don't have time to.  But on the way home today I was listening to the loud praise music and fighting back tears.  It just felt so good to feel good.

So with all the sad news posts lately I wanted to share some good news.  And after a day of home school and grocery shopping I had the energy to write it!  Amazing!!  Now looking at this again several hours later, I am absolutely exhausted and wished I'd rested instead of writing.  But I'll learn to balance bouts of energy. I'm just not used to having any!  Fall has arrived and I am starting to feel better.  My doc had promised that I should feel somewhat better in spring and fall and I'm thrilled to see he was right.  I am so thankful.

So with optimism abounding right now I'll share some of the perks of having POTS.

• Salt.  Most people have to try to limit their sodium intake.  With POTS however, sodium helps.  It increases blood pressure and helps keep fluid volume up.  This gives your heart more to pump making it easier to get blood to your brain.  In fact my doc kept telling me I wasn't eating enough salt.  I couldn't possibly eat as much as I was supposed to so now I take sodium tablets in addition to eating lots of salt.  This is how much salt I'm supposed to eat a day!

• Compression Stockings.  OK, it might be a stretch to call this a perk, but they really help.  They are hideous.  At least the ones my insurance pays for are.  It's often to hot for stockings with jeans and stockings with shorts make my legs look fake, literally.  One day I was in my yard wearing said hideous stockings, capris and tennis shoes.  (Give me a break people.  I live in the middle of nowhere and was not expecting company.)  Well, the FedEx guy caught me by surprise.  I have never seen a grown man stare so blatantly with his mouth hanging so wide open, and I do believe I was given the power to read minds for just a minute.  And this is what the FedEx guy thought, "Seriously!  How have I been delivering to this girl for years and never noticed that she is a bilateral amputee?"  I smiled, grabbed the package and darted into the house, while FedEx guy thought, "No wonder I never noticed.  She sure moves fast on her prostheses!"  (Clearly FedEx guy has some medical background.) So this uncreative girl has been forced to use her right brain just a bit. I cover them with cheep, cute tights.  Not genius but I was proud my exhausted brain thought of it.

• Laughter and jokes.  As seen by my run in with Mr. FedEx, often there is nothing a Potsy can do but laugh at herself.  And there are plenty of jokes out there to laugh at, as well as a whole list of "You might have POTS if..."  My favorite answer is "if you have enough medical material to be a stand up comedian, but you can't stand up."  So here is a pic that makes me laugh.

Now that's funny!  (In case you don't get it, many people with POTS pass out a lot or at least come very close and spend a lot of time on the floor.)

• Most important are family and friends.  I have a very difficult time asking for help but I have great family and friends.  Many of them recognize when I am in need and help out without my even asking.  My husband is beyond incredible and does anything and everything he can to help.  In fact, Aiden asked Greg tonight, "if you could have anything in world what would it be?"  Without a seconds hesitation Greg answered, "for Mama to be well."  My mom unfortunately understands all to well what I am going through.  And she still does so much to help.  Friends near and far have encouraged and prayed.  This means so much.  I knew what a great support system I had before, but POTS has made it abundantly clear.

• And of course I am learning to trust and depend on God and His strength.  So often I truly have no means of my own to get through and I know it's only by His grace that I do.  That He cares to help me is the real phenomenon that I pray I am constantly overcome by.

Opening Up Part 2 -- The Reality (Apparently the true reality is I'm longwinded!)

I have heard many people talk about others dealing with difficult things in life.  Things like the death of a loved one or cancer.  People are always praised for not complaining or for putting on a brave face.  There is good reason for this.  But people grieve in different ways.  I’m sure some only “complain” to God or to their spouse.  I know personally I can be brave most of the time, but there are those moments when I just can’t do it any longer.  I don’t think that there is an exact right or wrong way to handle each difficult thing in life.  If you melt down and complain and cry out to the heavens I don’t think that means you are doing illness the wrong way.  Each person must be free to work through their emotions in the way they need.  I realize this is one reason I haven’t written before.  I don’t want to be criticized for complaining or not being strong. 

Oh, it is so strange how this all plays out!!  I couldn’t have cared less what people said or how they criticized my choice to adopt or anything else I chose that I felt to be God’s leading.  But with illness I have had no choice.  And I find myself insecure and wondering what others think.  Yet I had fully surrendered my life to God, for Him to do as HE chose.  I assumed He would choose another adoption.  That my life would settle down as the kids got older and I would begin speaking for Compassion again.  I would see hundreds of kids sponsored.  Maybe we’d foster again and never have an empty nest.  I never imagined this.  Yet why do I assume that this is not just as much His leading?

I was reading recently the book “POTS Together We Stand” by Jodi Epstein Rhum.  There is an article in it by a psychologist, Michelle Roger, who also has POTS.  She talks about the stages of grief and then goes on to say,

“But what do you do when the event that brought about the grief in the first place never leaves?  How do you deal with something that can cause little losses (and sometimes big) every day, such as a chronic illness like Dysautonomia?  Living with Dysautonomia you are constantly reminded that you are no longer the person you once were.  From the moment you wake up, each and every morning is a struggle.  Just to get out of bed and dress you are reminded every step that you aren’t like other people…  ”

“…perhaps the biggest loss living with chronic illness is the loss of you.  By that I mean the you, who you once were before you became ill; the picture you had in your head of you and where you fit in the universe….. It’s often not until you are faced with something like illness, that you realize that you did indeed have such a picture, one to which you were particularly attached.”

I am realizing that I was oh so attached to the picture I had of myself.  I was super woman.  I was patient and always played with my kids.  I was there for every field trip.  I’d never yell at them.  I’d speak to them about God and His goodness constantly.  I was always there when they needed to talk or cry.  I’d support my husband at all times.  I was in super shape physically.  I could hike several miles with a child on my back and barely get winded.   I was an advocate for those in poverty and spoke up for adoption.  I taught at church.   I was going to work alongside my children in food pantries.  We were going to foster again, adopt again, live overseas, do mission work, meet all our sponsored kids.

So here is the reality.  I’m not trying to be depressing or complain.  I just want to give a glimpse into what the POTS world looks like.  Reading a list of symptoms can seem so abstract.  The reality is that being my children must be hard.  I have such light, noise and motion sensitivity along with debilitating fatigue that I snap.  All the time.  Kids are a bundle of noise and motion even when they are perfectly well behaved.  It takes 3 times the amount of energy for a person with POTS to stand as it does for a normal person and mornings tend to be the worst as your body tries to get used to being upright again.  So when I stand and make them breakfast, I know it sounds utterly ridiculous to a healthy person, but I often barely have enough energy to muster a smile for them, much less speak of God’s goodness. 

When I eat, blood is diverted for digestion making it even more difficult for blood to make it to my brain.  So my heart pumps even faster.  So I eat and I feel like I’m running a marathon.  Or I don’t eat and I’m grumpy and hungry.  The days that I choose not to eat, I then eat too much when Greg gets home and then I’m useless.  Or I push myself and nearly pass out.  I feel like that is completely unfair to him to have to take over after his hard day of work.  He is completely willing and wonderful, but I don’t want him too have to do that.

Taking my kids out to play in the summer can be dangerous.  Heat dilates blood vessels, thus making the condition worse.  Thankfully I’ve never passed out but I have had multiple times where I was very close and completely incapacitated for a while.  Even running errands in the heat scares me because I get so dizzy and my heart rate becomes so fast.  Sometimes I’m insecure knowing that I could get into trouble very quickly if my vehicle was to break down or we have an accident.  It’s definitely a lesson in learning to trust and rely on God.

But yet, it’s hard to tell your kids that you can’t go see fireworks for 4^th of July because of POTS.  It’s hard to take your kids to camp meeting and realize your 9 year old is afraid to go play with his friends because he knows it’s hot out.  He is afraid what will happen to you and his little sister if you are alone and pass out.  It’s hard that today I missed Carrington’s first field trip to the state fair.  I’m the kind of mom that doesn’t want to miss a thing.  It’s one of many reasons we homeschool.  I agonized over it!  I missed her pride of going with her classmates, her excitement.  She is too little to understand, “but WHY can’t you go Mama?!”

I used to pride myself on being very physically fit.  We attempted an amusement park this summer and I was so embarrassed because I had to take a cane with a stool and sat in lines panting for breath.  When I tried to walk I got right sided weakness and slurred speak.  It took me a week to recover.  And it’s not that I don’t exercise.  I still do daily.  I’ve had to modify my workouts but I still do the best I can.   

I used to love walking the hills at camp.  I could carry a full conversation without getting short of breath.  This summer someone said to me on those same hills, “This is some workout, huh?”  I couldn’t even give a one word answer, just a weak smile.  I knew he’d said it because he felt sorry for me as I was clearly struggling to make it.  I felt completely humiliated.  (Hmm, prideful much?  Just realizing some lessons perhaps I need to learn from this.  See, writing is therapeutic!)

As for me being some great advocate in the war on poverty, well I barely have enough energy to get through each day.  Many times I don’t make it through the day.  I feel like I don’t provide well for the needs of my own children.  I have no physical or emotional energy left to tackle the needs of the world, even though they are important to me.  Live overseas?  I can’t be without A/C for a day.  Some great missionary I’d be. 

Thank God I have still been able to work.  I only work 6 days a month (besides homeschooling the kids every other day) and every time I wonder how I’ll get through it, but I do.  It is exhausting and it usually takes a day or two to recover, but I can do it safely.   That does wonders for my sense of wellbeing and accomplishment.

But it’s not just my own picture of who I am that is lost.  One of the things that saddens me the most is that my kids don’t seem to remember who I once was.  I was the one who went nonstop from morning till night, I accomplished so much.  Now all they see is the me who fatigues so quickly, the me who has to stop and rest all the time, the mom who gets so short of breath when we try to play baseball that we have to stop the game, the mom who is short tempered and is constantly asking for quiet and stillness.

So are you still with me after all that depressing mumbo jumbo?  I did say I wanted to show the reality of the POTS world, so there it is!  And if I am being perfectly honest, this only gives a small glimpse.  But I also have a little confession.  Life is so busy that I don’t have much time to process all of this.  I don’t often think about prognosis even though it has gotten worse very quickly.  I just don’t have time to dwell on it.  But I do manage to get jealous.  I know so many wonderful adoptive families out there.  Every time I hear that someone else is adopting again or someone else is moving overseas or going on mission trips or starting a new great charity, I get jealous.  Ridiculous right?!  Instead of being happy and grateful that someone I care about is living the dream, instead of being thankful that another child is gaining a family… I have a mini pity party.  I cry out to God, “Why?!  I would have done all those things!  I was not only willing but I WANTED to!!! Why?”

Reading over the blog last week I read this that I wrote about having no greater joy than living out God’s will for me.  Then I’ve been reading  ”Dangerous Surrender” by Kay Warren.  She talks about a time in her life when she felt “put on the shelf” by God when she had dreams of how He could use her.  Her husband, Rick Warren, was becoming extremely in demand.  And she was jealous.  She finally prayed to God,

“If taking up the cross to serve you means being put on the shelf indefinitely or even forever, I’m yours.”  And later she says, “I stopped fretting over what would happen to me; any gifts I had were given to me by God, and if he chose to use them in a way that was different from the way I wanted them to be used, that was his decision.  I was finally at peace.”  And later, “You see, it really isn’t any of my business—or your business—what God does in someone else’s life.  My only business is to follow him.”

Wow.  I haven’t had been able to accept my current condition because, although I never put it in words, I thought that POTS derailed not only my plans but HIS.  My joy comes from knowing I am living out His will for my life, yet I had fully surrendered to Him and told Him I’d do whatever He asked.    Did I think POTS caught Him by surprise?  Perhaps He didn’t cause it.  I don’t know, maybe He did for some divine purpose.  But either way He can certainly use it to work out His perfect will. 

But I have to stop fighting against Him… even if my dreams are put on the shelf. 

I felt such peace after reading Kay Warren’s writing.  And I must say I am sorry to all the adoptive mamas I know out there that I have envied.  It is not my business what God does in your life.  But I can truly say that God has given me peace and I am so happy for you and for your precious children and the many lives you touch with the work that you do.

So the reality is that POTS is no picnic.  Not for me, my husband, my kids, or my extended family.  But I had placed my life fully in God’s hands, so why did I assume this wasn’t for my own good?  When things went wrong I tried to grab back control, forgetting the lessons I’d learned.  I am so much more at peace now remembering that even in hard times I can have joy as long as I am fully surrendered to God and His will. 

One of my favorite quotes comes from Jennie Allen’s book “Anything”.  “You have to thank God for the seemingly good and the seemingly bad because really, you don’t know the difference.”  Now I am excited to see how God will use this “seemingly bad” for good and for His glory.

The Covenant Prayer introduced by John Wesley and credited to Richard Alleine

I am no longer my own, but yours.

Put me to what you will, rank me with whom you will;

Put me to doing, put me to suffering;

Let me be employed for you or laid aside for you,

exalted for you or brought low for you;

let me be full, let me be empty;

let me have all things, let me have nothing;

I freely and heartily yield all things to your pleasure

and disposal.

And now, O glorious and blessed God, Father,

Son and Holy Spirit,

you are mine, and I am yours.

So be it.

And the covenant which I have made on earth,

let it be ratified in heaven.

Amen.

Opening Up Part 1

Greg and I are away for a few days for our 16^th anniversary without the kids.  It has given me some much needed time to think, pray and process all that life has thrown our way recently.  One of the things I have done is read over some of my old journaling, including our blog.  The blog that I have not written on in over 3 years.  Yes, I started it to keep friends and family updated on our adoption.  So it makes sense that it went dormant.  But there were many times that I wanted to write and couldn’t.  Life has just been to busy.  There is so much to say, where would I even start.  And I feel awkward because what I want to write about isn’t about adoption or Compassion.  It’s about me.  How narcissistic is that?!

Those who know me know that I’ll tell you anything that is going on with me in person.  But putting it on face book or blogs just feels weird too me.  However, writing has always been therapeutic for me.  (Didn’t say I was good at it, just said it was therapeutic.)  And I am encouraged to speak out because awareness needs to be raised for what I and my family are going through.

Life has changed in so many ways.  For starters, my babies aren’t babies anymore (sob).  So our days are no longer filled with swinging in the backyard and playing on the floor.  We homeschool.  For many reasons it is just the best fit for our family currently.  Secondly, one of my kids has a multitude of health issues.  Between work, homeschool, therapies and doctor appointments I had a completely full plate.  But I was so confident and joyous.  God had worked so mightily. (He’d even saved me from melanoma.  But that’s another story.)  As I’d written on this blog before we fully planned to adopt again.  I had big plans for what I was going to do with my life.  Yes, I had even blogged about God’s plan always being best, but I still had MY plan.

And then dysautonomia struck.  Don’t know what that is?  How about this, POTS (Postural Orthostatic Tachycardia Syndrome).  Still nothing?  Don’t feel bad.  Spell check doesn’t even recognize it.  I’d say about 90-95% of the people in the medical community that I have talked to have never even heard of it.  I’m a PT and Greg is a PA and you could include us in that statistic until I was diagnosed.  We were clueless as to what it was. 

Dysautonomia just means malfunction of the autonomic nervous system.  The ANS controls pretty much everything you don’t think about, your organs, heart rate, blood pressure etc…  POTS is due to dysautonomia.  Quality of life with POTS is compared to living with Congestive Heart Failure or COPD.  In my case they believe that my blood vessels do not constrict when I stand like they do in normal people.  So my blood actually follows the law of gravity dropping into the lower half of my body.  When I stand up my heart rate goes from 60 (being paced by my pacemaker that I have thanks to dysautonomia) to anywhere from 120 to 165 beats per minute.  It does this in an effort to get the blood back to my heart and brain. It takes 3 times the amount of energy for someone with POTS to stand as it does for a healthy person.  This causes a lot of crazy symptoms.

• Dizziness
• Fatigue
• Migraines
• Ringing in ears
• Light, noise and motion intolerance
• Nausea
• Right sided weakness
• Imbalance
• Slurred speech
• Pain in legs, back and neck
• Blurred vision
• Numbness, tingling, cramping of hands, feet, legs, and arms
• Inability to sweat, causing inability to regulate your own body temperature
• Sick sinus syndrome requiring the need for a pacemaker

It was quite a process to find out what I had.  So many doctors.  So many tests.  No one really knew.  They thought I might have Meniere’s Disease, MS, ALS, strokes.  They threw out a lot of scary stuff that fortunately I did not have, but I have the symptoms.  The most insulting was a neurologist who didn’t have a clue, so he told me that I just needed to learn to deal with my anxiety.  When I told him I had no history of anxiety, he said it didn’t matter, that sometimes anxiety presents suddenly and causes stroke like symptoms.

So my point is that the medical field, and the public in general needs to be made aware.  Fortunately I did eventually get referred to a doctor who is very knowledgeable about POTS and he has been my lifesaver.  Thank you God!  I would not be functioning right now if not for the right diagnosis and the right treatment.  I know a lot of medical people, so please, take some time to research it.  It’s not that rare, it’s just rarely diagnosed!   Here is a good link to get you started.  http://dinet.org/index.php/information-resources/pots-place/pots-overview

I will write more soon about how POTS effects our daily lives.

Rwanda Family Reunion 2011

Carrington wanted to hang with the boys on the Merry-go-round but was to shy.

Hangin with Judah and Elsa

Making plans to stay up past midnight. These 3 could party late! We'd hear them giggling and then they'd pretend to be asleep when they heard us coming!

Trying to get them all in one shot.

Re-enacting a pic we took in Rwanda, but we're missing the Thomas's and Watsons

Outside the Spaghetti Warehouse with most of the Rwanda Mamas that were there.

We flew to Chicago and road tripped with Rebecca and Elsa Furr to Omaha. These 2 did great in the car.

Below are the ladies and babies that stayed together since our husbands and older kids couldn't come. We had a blast!

When we started the adoption process I expected to gain a daughter. What I never expected was to gain an entire new extended family. But that is exactly what has happened. I cannot imagine our family without our daughter, but I also can't imagine life now without my new family, my sister's in Christ.

We pray, worry, laugh, cry, rejoice and find support together. We are there for each other when we experience the inevitable struggles that come, and we understand each other like no one else can. Who else understands what its like to long for the children left behind? Who else understands the desire to be able to tell her birth mother how amazing she is? Who else understands the love for your child and the pain when others don't share the same sentiment? Who else understands what its like to be on display everywhere you go? (And man oh man, were we on display this weekend! "Are you guys part of some sort of organization?")

We stay connected in many ways. Via phone, email, snail mail, blogs, FB, skype, chat groups, and now reunions. But regardless of how we stay connected, the fact remains. We ARE connected.

And not because of the things listed above. We are connected because our children are forever connected. There are so many questions that our children will ask one day. And there are few answers. The only people that will truly be able to understand and help Carrington when those difficult times come are the children who were a part of her life before I was.

That is why this weekend was so beautiful. It was inspiring on so many levels. I love hearing the stories of how God is leading. I enjoyed every second. I feel so rejuvenated and understood. I laughed and cried. I even screamed like a school girl when I first spotted Becky who I traveled to Rwanda with. But what truly made it so special was to see our kids together, to recognize the connection that they share and see how far they have come. And to recognize that God not only brought these children to us, but He brought ALL of us together to share this amazing journey.

Living My Life

Warning! Soapbox ahead, proceed with caution.

I have discovered that the thing that brings me the most joy in life is to follow what God calls me to do. Nothing compares.

Nothing.

This is when I feel the most alive, fulfilled, joyful, patient, loving.... the list could go on and on. So imagine my confusion a few days ago when someone who is very close to me says, "At some point you've got to start living your life."

Huh?

This statement was said after a discussion about how Greg and I want to adopt again someday. Now I KNOW that I often don't look like the picture of joy and fulfillment. I know that, God forbid, you should happen to see me in Walmart with 3 kids, you would see a red head racing down the isles like a mad woman, yelling at her kids to stop touching things. You'd likely see a woman that looks haggard, stressed and just plain exhausted. I know that even in church, my face shows the stress of keeping my 2littlest ones from killing each other (we don't even shoot for quiet, no bodily injuries and we call it a success!). I am not naive to this fact. But I'd like to bring up an old worn out saying.

You can't judge a book by its cover.

Or more importantly, what you believe is truly living might not be what someone else believes truly living is. Yes, I am exhausted. Yes, I am sometimes stressed (OK, a lot of times). Yes, sometimes I just need to NOT be needed! But, BUT I am also more fulfilled than ever before. I am more confident than ever before. I have an inner joy that I have never known before. Because my fulfillment, confidence and joy are not based upon circumstance or even screaming children. These are based on living the life that God has given me, on pursuing the things that HE places on my heart, and on knowing that I am never doing this of my own strength.

Never.

At a graduation speech last year the question was asked "whats the one thing you want out of life?". My immediate answer, "To live in the center of God's will." Because I know there is NO greater joy.

Whats that song that says "Where you go I'll go, when you stay I'll stay, where you move I'll move. I will follow you."

That's all I need to feel like I am really living my life.

And for the first time, I feel like the expectations or criticism of others can't touch me. I was just confused by the statement mentioned above, and sorry that this person did not understand what "living my life" means to me. That I'm not waiting for something better (other than heaven of course!). I wasn't angry, defensive or hurt. I really only have one person to answer to. And that brings a peace that I can not explain. I know who I am. More importantly I know whose I am.

And I'm so happy to be living my life.