The elephant in the room

Many people have been asking for an update on my health since Lukas was born.  I wish there was a simple answer to this question, but unfortunately, there isnt.  I have been diagnosed with POTS or Postural Orthostatic Tachycardia Syndrome.  What it means, in a nutshell, is that my autonomic nervous system isnt functioning appropriately and I experience a host of symptoms because of it.

The first question every one asks me, is, “Are these symptoms new?” People always say, “You never looked sick.”  Thats the trouble with POTS.  Its not a syndrome you can see.  Since the onset has been gradual, I have learned to compensate and live quite normally.  I cant really say, when I first started feeling like there was something wrong.  I think possibly high school?  Maybe puberty?  The first symptoms I remember were feeling my heart flutter, stomach issues and feeling weak, tired, and short of breath.  In college, I had my first real “episode”.  I was in my dorm.  I knew as soon as I woke something was very wrong.  I couldnt move.  I couldnt see.  The pain in my head was intense.  I took some time to recover enough I was able to crawl to the bathroom, down the hall, to throw up and back to my room to call my mom.  By the time she got there, I was mostly recovered other than feeling fatigued and shaky.  She took me to a neurologist who diagnosed me with complex migraines.  In nursing school, I again had a round of “episodes”.  For three weeks in a row, I passed out in clinicals, standing at a patients bedside.  3 ER visits and nothing seemed wrong.  I went back to the neurologist, who said I was probably “just anxious” and “needed more salt in my diet”.  No one was hearing me, and my long symptom list.  I couldnt go up the stairs at school, without literally wondering if I might die of oxygen starvation.  Exercise more, they said.  I couldnt stay awake in class or clinicals.  Sleep more, they said.  My heart raced, all the time.  Dont be anxious, they said.  I continued to pass out.  Drink more water they said.  I knew something was very wrong, but no one heard me.  Finally, after my nursing school told me I couldnt come back to clinicals without a solid answer, my primary ran some tests and discovered I had severe anemia.  He referred me to a hemotologist to begin treatment.  But even then, the symptoms continued and no one was taking me seriously.  So, I learned to cope.  Learned to push through my symptoms and hide them.  The only person who truly knew how much I struggled to do daily life, was my husband.  We knew it wasnt exercise intolerance, anxiety, complex migraines or simple anemia as my host of specialists had suggested.  We knew something else was wrong, but had no idea where to turn for answers, so we just learned to cope.  So, no, these are not new symptoms.  They are very old symptoms that finally got stronger than my ability to hide them. Getting sicker while pregnant, ended up being an absolute blessing in disguise.  God really orchestrated the right people at the right time.  My decision to switch OB’s before the miscarriages, to a doc who just happens to have heard of POTS (which is really a huge deal), to the miscarriages being our “red herring” to put symptoms together, to an abnormal holter monitor, etc, etc…things really started to fall into place, after so many years.

The next thing people say is “Great!  Now you have a diagnosis, so you can get better!”  This is where it gets tricky.  Finally, yes, I have a name for my symptoms, but the tricky thing about POTS, is its just the syndrome, or term for the cluster of symptoms.  We now, have to figure out whats causing the POTS, for me.  The list of possibilities is long.  It ranges from cancer, to multiple sclerosis, to adrenal fatigue, to anemia.  Hundreds of possibilities.  So in some ways, Im no closer to answers than before a POTS diagnosis.  The other hurdle, is that other than my OB,  I havent found a doctor locally, who has even heard of POTS, let alone, what the next step should be.  So, in order to get further diagnostics, I will need to travel to an “autonomic clinic”.  There are several, around the country, and honestly, I have no idea how to know where to go.  Its going to take some time to research.  As a wife, and mom to 4 small children, the need to travel, is a huge hurdle.  I am praying God will direct our family to the proper resources and bring the right people along side of us, to help with childcare and running our home as well as help us overcome financial limitations.  I have no doubt that our church family will rise to help us meet these needs, as they have done, so often, in the past three years.  We are blessed and loved deeply by our church.  Im also praying that doctors will respect that I intend to continue nursing Lukas, so will need to make that part of my care plan.  I am so thankful to have some really knowledgeable and smart IBCLC’s (International Board Certified Lactation Consultants) as friends, who I know will help guide me through that.

People are asking how they can help.  This question is the hardest for me to answer.  Accepting help is not easy for me.  I dont like to admit that I am not invincible.  I dont like to admit that I am weak and need help.  I dont like people to see me struggle.  Ive have worked hard, for years, to convince people the opposite.  Over the past couple of years, with all of the trials we have been through, God has forced me to confront this issue and has really worked on my heart, to show me, just how much I need to allow help and love of others.  But, Im still struggling with knowing how to ask for help and accept it.  I have a big fear of allowing people to help and becoming lazy or complacent.  I have a big fear, of being replaced.  I know that would never be anyone’s intention, and that is a very irrational fear, but its a real fear, for me.  I want to keep fighting, I want to keep living and living as close to normal, as possible.  I dont want to be labeled as someone with a chronic illness.  But I do have a chronic illness.  So, finding balance, is going to be my biggest personal struggle.  I need people who are willing to love me through my worst and help me function at my best.  Overall, most of my symptoms are back to my baseline, so I can function very normally, most days.  I dont want to give the impression that Im bed ridden and unable to care for my children, but I also want to be honest in admitting, I do have to limit myself and my commitments.  I think mostly, I just need reassurance.  Reassurance, to know its ok if my house isnt spotless.  To know its ok to rest.  To know that I am not failing my children by not going to every play date or library event.  I need to be reminded to focus on the truly important things in life and give myself grace in those more trivial areas.  Most of all, we just need support in prayer.  There is just so much life happening right now, that some days, you just dont even know where and how to start.  Levi is also starting to have some issues that we cant easily identify and I am starting to wonder, if whatever is causing my POTS, is also causing issues for him, or if we need to be looking into a different direction for him.  We have so many uncertainties right now, both big and small.  Prayers for peace, direction and discernment would be so appreciated.

I share all of this with real trepidation.  Its so important for me to be real with people.  God cant use me, if I refuse to be honest.  But, I really dont want people to walk on eggshells around me.  Im the same I have always been, just with an appropriate label now.  My sinful desire, is to keep living a “secret life” as I have done for so many years and to just hide my limitations.  But my reality, is that, that life, was making me sicker.  That life, was a benefit to no one.  I really dont know what else to say, other than, finding balance, between admitting you are ill, and not being defined by your illness, is not easy.  I am going to need a lot of grace as I search for that balance.

My outlook is hopeful.  I have connected with some support groups and it is so validating to know that I am not alone.  To know im not mentally ill or just lazy, as so many have suggested to me, over the years.  Its so validating to know, these symptoms are real and there is hope, for healing.  I feel like, just having that simple validation, has healed my soul in ways I cant even express!  So onward we go, taking one day at a time and working to rely fully on God for all things.  Its not easy friends, but Its also insanely rewarding and amazing, to see, over and over, just how big, my God is!

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