We Create Our Own Path

We decided to adopt.  After my husband’s surgery, with my reproductive history, we decided adoption would be best.  We weren’t ready, but it was always something we planned to do in the future.  We loved kids, and always wanted a family.  It was something we always pictured in our lives. 

Jamie and I have been through everything together and come out stronger.  I suppose the key to our relationship is two qualities we share, honesty and courage.  We are always honest with each other, spawning countless conversations that have brought us together.  And we have courage through life’s hardships.  I believe it is through these two qualities that we have learned another quality that has strengthened our relationship, kindness.

I would never describe myself as energetic, but in spring of 2019 what little energy I had significantly decreased.  I went through a period of about five or six weeks of diarrhea that just zapped my energy.  I missed many days of work at the daycare, simply because every fifteen minutes I was having diarrhea. 

I saw a new family doctor, as mine retired, and this doctor referred me to a gastroenterologist.  I had a colonoscopy that summer to see what was going on.  The colonoscopy came back clean, but my EGD showed inflammation in my stomach. 

I wondered if I had a food allergy causing digestive issues, as my nieces and nephews both have food allergies.  It really would not be a stretch, either, because I have always had problems with digestive issues.  Bouncing back and forth from diarrhea to constipation has become the norm in my life, making me afraid to travel.  Maybe a food allergy was the answer.

I was hopeful and looked forward to finding out what the problem was and an easy solution to fixing it.  Maybe I could just cut a certain food from my diet and I would be better! 

I was referred to an allergy and asthma doctor.  Before performing my allergy test, I was tested for asthma.  I did not think anything of it, but the technician’s response made me instantly realize I knew so little about my body.  After blowing into tubes, following the technician’s guidance, the technician said, “Oh, you have a score of 80.”  I asked her what the normal range was for that test, and she responded by saying, “We don’t like you to be above 20.”  Basically, my lungs were very inflamed, and I would start an inhaler right away.

It makes sense if I think about it.  I always had seasonal allergies, and if I laughed too hard, I would begin coughing.  I just never knew.  I grew up in the country, surrounded by fields.  Always just assumed it was allergies. 

Next, they did the allergy test.  I lay on my stomach, while they poked my back with different allergens.  The doctor came in to check on me, which I was informed, he never does.  I realized I was a special case, as I had been my entire life.  I found out I had no food allergies, as previously thought, but I had every single environmental allergy there was.  I was not shocked by this revelation, either.

I asked the doctor if that was why I break out in rashes so often.  In fact, at that moment I had a huge red rash stretching from my armpit leading down my breast and abdomen.  It was like a blister on my armpit, causing pain.  He examined it and referred me to a dermatologist. 

The dermatologist took a biopsy, and it came back no known cause.  It was not caused by bacteria, fungus, or anything.  I had no idea what was causing it.

It is here, where I have to back up the story to my brother and cousin.  When my younger brother entered college, all was well.  He had always been the healthy one, while I was always the sick one.  However, all that changed the day he called my mom.

            “Mom, my eyes hurt.” 

His eyes hurt to an incredible degree, and his skin felt as if knives were stabbing him.  He was sent to specialist after specialist, and after years was told he most likely had Behcet’s syndrome (though that is difficult to officially diagnose).

My brother’s retina detached several times and he had countless surgeries on his eyes.  His vision has suffered dramatically.  Behcet’s is an auto-immune disease that causes inflammation in the blood vessels, often settling in the eyes.

My younger cousin in Texas, also suffered health-wise.  She had digestive problems and rashes, among other issues.  After one of her hospital stints to discover what was causing her problems, a doctor randomly asked if she had heard of Behcet’s.  My uncle immediately informed the doctor that his nephew (my brother) had just been diagnosed with that disease.  A slew of doctors were brought in, and she was diagnosed with Behcet’s.  This past year she was also diagnosed with Lupus.

So, now, back to 2019.  My cousin and I had been comparing symptoms because we both suffer skin and digestive issues.  I mentioned this to the allergy doctor, after my skin biopsy came back clear.  The doctor then referred me to a rheumatologist, as we all thought something deeper was going on.

I had many symptoms over the years, so I made a list.  I get blisters from being outside in the heat, and in cold temperatures my skin turns white.  I have joint paint, which with my bone disease is not uncommon.  However, lately my joints would completely lock up, sending me into such pain I could not move.  There were many symptoms, and I presented each one to the rheumatologist.  He decided to do some bloodwork.

Honestly, my husband and I thought it was going to be Lupus.  The symptoms seemed to match.  My biggest fear was that they found nothing, and I would be at the beginning again.  That fear, as it seems, was not the case.

My mom sat with Jamie and I at the doctor’s office, as he stepped in the door to go over the bloodwork.

            “Well, it’s not Lupus.  We know exactly what it is.”

Just knowing it wasn’t Lupus brought a smile to our faces.  We were so thankful!  That is, until he continued speaking.

            “You have Scleroderma.  There is no cure.  You just live life the best you can.”

We all let that sink in a moment before bombarding him with questions.  Basically, my skin and connective tissue will harden over time.  At first my skin is only affected, which is why I have some skin tightening, among other issues. 

Over time it will cause the tissue of my kidneys, heart, lungs, digestive system, esophagus, and other organs to harden.  This will cause me to not be able to swallow, have difficulty breathing, cause kidney failure, as well as heart problems.  He said most people have twenty to thirty years before they have any of the severe effects. 

We do not know how long I have had this, because I have had a lot of these symptoms for years.  That means, we do not know how long I have before my health significantly declines.  And, even if we did, there is nothing we could do to slow it down.

The diagnosis came in January of 2020.  I think we all know what a wonderful year 2020 was. 

I had to leave my job at the daycare.  I was exhausted, stressed, and as that causes symptoms to worsen with Scleroderma, it was best I left.  My last day was supposed to be in March of 2020, but Ohio was locked down about a week before my last day.  I didn’t even get to say goodbye to my class or give them their goodbye presents.

My husband’s job sent him home to work before the lockdown, in order to keep me safe.  He is still working from home.  As odd as it is to say, our times at home together, even though he is working, are some of the most wonderful times I have ever experienced!  It has always been my dream to spend every moment with him, and now it has come true!

I had no idea what I was going to do for a job, knowing I am now going to be unable to work at such physical jobs as I always had in the past.  I mean, I worked in the nursing home for seven years, and a daycare for seven years.  My jobs have always been physical! 

I love taking care of people, helping others.  I had no idea what I was even qualified to do now that the world has completely changed, and I do not mean just my world.  I mean, THE WORLD, has completely changed.

Much to my surprise, a few families I had cared for at the daycare offered me part-time nanny positions for the summer, and one family extended it through this school year.  I get to take care of kids that I love, and still have days to rest at home!

Jamie and I are trying to completely change our diets.  The thing is, Jamie and I don’t know what is in store for our future.  We usually tend to laugh when something big happens to us, because something is always happening to us.  If it is not my health, it is our cars breaking down, or some other huge bill popping up.  That is life, and not just for us.

I truly feel 2020 was a blessing for us.  We got to spend so much more time together and were even able to be home with our dog before he passed away this spring. 

2019 and 2020 have brought so many changes into our lives, but so many of them have been good that I find it difficult to complain.  I still complain, believe me, but I am reminded of our blessings as well.

The fall of 2019, Jamie and I had a big discussion.  I confessed that I enjoyed our life together and didn’t know if I wanted to have children.  He felt the same.  Instead, we decided to use what we had to bless the children in our lives.  We chose what we wanted our life to be.

I feel like our whole lives we lived according to how we thought we should live, but these past few years we decided to live how we wanted to live.  We sold our house and moved closer to my husband’s job.  This move was big for us, though it was only a half-hour away from our families.  This move signified our choosing the life we wanted to live, and not just letting life happen to us.

Jamie and I are thankful for little victories.  We have been through so much in our lives that it just does not seem real.  But I would not trade a single moment of it, because I have been blessed with a love like no other.  We do not know what the future holds, but as long as we have each other, that is all that matters.

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Have you ever faced a difficult time or decision, knowing it would change your life? How did you react? Don’t forget to comment or reach out to me on:

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