How we got to where we are - Part 3

Part Three

(This is the last part on how we got to where we are now.  I am hoping to post mostly about current things after this).

So we started the traditional treatment – anti-depressants.  I was hopeful that we would find something that worked quickly.  Not so.  If we found something that helped it would only be effective for a few weeks.  So it would continue for the next several years.  I should also mention that within two months of moving back we got a cat (that’s its own story) and a dachshund puppy.  Someday I will bore you with the story of Tika, but for now I have to say that she has been a tremendous comfort to me.  For a chronically ill person, there are few things in life as comforting as a pet. 

After spending the winter in Idaho City with Derek driving an hour to work in Boise, we decided to go ahead and look into buying a house.  This was a surprise to some people who thought we were planning on going right back to grad school.  Not only did we buy a house, but we had pets (unwelcome in student housing).  I took criticism because Derek had such a good thing going with his teaching position (which paid for grad school), and it was such a good opportunity for him.  I had the same deal and opportunity, by the way.  Like I needed more guilt and anxiety heaped on.  Besides that, God's will for our life starting leading us away from grad school.  Our plans to go back got fuzzier and fuzzier.  If we had put every part of our life on hold (as was expected, apparently), and not bought a house or pets, I believe with all my heart we would have been out of God's will.  Even with fibromyalgia, our life isn't static.  Though it feels like I'm not moving forward, we are always growing and changing. 

I was officially diagnosed with fibromyaglia in 2004.  Although we knew that's what we were dealing with, the actual diagnosis hit me hard.  It made it permanent for me.  Fibromyalgia would be with me everyday for the rest of my life.  I was only in my 20's and I would never feel completely healthy again.

Here we are and more than a decade has passed since my symptoms started.  Never, ever could I have imagined that I would not only still be ill, but feeling worse than ever.  We delayed having children thinking I would get better.  We went into debt because I never have been able to work again.  Even five years ago I could be more active. I could work in the garden.  I can’t do that now, and I really miss it.  In 2008 we did find a drug that worked well for 9 months (with side effects), I stopped taking it for fear that it was the reason I wasn’t becoming pregnant.  I have tried it twice since then and it has never again been effective.  I did get pregnant three months later, however. 

During my pregnancy I was sure that God was going to either heal me or help me function better because I would have a baby to care for.  By now Derek had been a real estate agent for several years.  He’s able to work from home which is necessary for us.  I was convinced though that he couldn’t take care of a baby and work, or that he shouldn’t have to.  Everyone told me that fibromyalgia would go into remission during pregnancy, but it actually got worse for me.  I struggled with complications.  Nevertheless, I was still convinced that once I had the baby *poof* I would be better.  I had to be. 

I was worse.  The year after Noah was born was the worst year I could remember physically.  Noah is now almost two, and things continue to get worse.  I can count on one hand the number of times I been to church in the last year and a half.  I love going to church.  I miss it.  I makes me truly sad when my friends have the opportunity to go, and just don’t. I think about going to church all week, and pray I will be able to get enough rest, feel well enough, have the energy, and courage to get out of the house.  It’s a slap in the face to me when my friends have all those things, but don’t go.  Don’t they realize what they are missing?  How can you grow if you don't go to church?  How do you stay encouraged in your faith without the fellowship of a church family?  It's so vital to a christian walk.  I realize I’ve drifted off topic.

I am due to have our second baby the week after Noah turns two.  We were surprised by this one.  I had decided that it would be better to wait another year before having more kids.  Again, my plan and not God’s plan.  The further we get into this year, the more God hears me crying out “how will I take care of this child?”  “How can I bring another child into our situation?  What if we can’t afford to take care of another baby?” 

Don’t get me wrong.  My favorite thing in the world is being a Mommy.  I am continually frustrated because I can’t do it as well as I would like.  It’s funny because I never gave much thought to having kids.  I took for granted that IF I got married, I would have kids no sooner than 5 years into the marriage.  That was all the further I thought.  I never had the driving desire that some women have to become a mother.  It was just part of the package.  Then, several years into our marriage it was like a switch was flipped.  I wanted to have a baby.  I tried to ignore it for a long time, because I wanted to get better first.  We wanted to save up the money first.  Little did I know neither thing was necessary.  If we had stuck to that thinking we would never have had children.  When I finally became pregnant with Noah (it took almost two years), it was so exciting.  When he was born, it was like an epiphany for me.  Being a mom is the most fun I’ve ever had.  It gets me out of bed, which is no easy feat!  It keeps me here.  I cannot thank God enough for making me a mommy.  I am so overwhelmingly thrilled that God's ways are not our ways.  Still, I often falter and want to fall back onto my own plans.  I think I will probably always struggle with that.  But God is patient, and shows me over and over that His way is always best.

One of the hardest parts of fibromyalgia (no, there is no EASY part), is the mental/emotional struggle.  Everyday I struggle with guilt.  Guilt because I can't work.  Guilt because I can't be the kind of mommy I want to be.  Guilt because my husband has to make all our meals, maintain the house inside and out, and take care of our young son, and all while trying to keep his business going.  Sometimes Derek has to help get me from one room to the next.  Guilt because he does 99% of diaper changes.  Guilt because we are in debt.  Guilt, guilt, guilt.

Everyday the "what ifs" threaten to overtake me.  "What if I hadn't gotten sick?"  "What if I could have been teaching all these years?" Teaching was something I truly LOVED, by the way.  "What if I could take my son to the park today?" "What if I could garden like I used to just a few years ago?" "What if I never get better?"  "What if my children have to grow up taking care of me?" That last one is a newer realization that still devastates me.

These are the times that I have to force myself to remember that my expectations for myself are the not the same expectations that my Heavenly Father has for me.  Not only do I often expect too much of myself, but I expect the wrong the things.  I expect to be a 50's housewife, filling my days with cooking, baking, laundry, housework etc . . . So that my family and home look shiny and perfect.  This is not realistic, and frankly not as important as the few things I do manage to do.  

When the guilt and the "what if's?" overwhelm me, I have to grit my teeth, dig down to my stubbornness and remind myself that I am NOT going to let fibromyalgia steal my joy.  It has stolen a lot of things from me, but my joy and faith in God are still mine to decide.  I will hold onto that.  I will keep it.  Without it, the worst part of me takes over.  My God deserves better than that from me.  My family deserves better than that from me.  I deserve better than that from myself.  That's why I titled this blog "HurtingbutHappy."  I can't choose how much pain I will be in tomorrow or how much energy I will have, but I can choose how I will react.  Sometimes I get discouraged and make the wrong choice, but, overall, I am striving to choose joy.  The monster may have my health, but it will NOT steal my joy!

I had to include these photos from our garden.  I was looking at them the other day and it struck me how much I miss being able to garden.  I have planted a couple watermelon plants since this time, but they never survive. :(

Some of the harvest from my garden in 2006.  Did I mention that I really miss gardening?!

Watermelon from our garden 2006

Same watermelon, and the cantaloupe was from our garden too.  They were both so very yummy!

How we got to where we are - Part 2

Picking up the story from the previous post.

Part Two

So the local clinic continued to refer me to other doctors.  We continued to struggle, but we made it through the semester and decided to spend the summer there.  Within two weeks, we knew I couldn't work.  We had found temp jobs, but Derek ended up working long, odd shifts to make enough money for us to just get by.  I felt lousy all the time, couldn't get out, and became very sedentary from the fatigue.  My nerves didn't settle down either.  I was really jumpy about noise, and although we now knew that nothing was wrong with my heart, I continued to have heart symptoms.  I didn't put it together until much later, but also, something always hurt.  I gained 60lbs in that first year (or so) of marriage and most of that over the summer.

We made plans to fly to Idaho and visit my parents that August.  My mom made an appointment for me to see our family doctor.  This doctor spent a good bit of time talking to both of us about what was going on.  He determined (as we had suspected) that I would not be able to continue in graduate school.  I was not disappointed immediately because I thought we'd sit out for a short time, I'd get well, and we'd go right back.  I knew we would be criticized for not finishing, but God's will doesn't always work in 2 year increments.  So Derek flew back to start packing, and my dad and I drove to meet him at our apartment a few days later.  

God had allowed it that my parent's rental house (right next door to their house) was vacant.  So we moved back to Idaho and right into a house next door to my parents.  Derek as repainting the interior of the house, and looking for a job when the 9/11 terrorist attacks happen.  I will remember that day my entire life.

Obviously, Derek found a job.  I continued to see my doctor after we moved back.  After testing my blood for everything possible, they found nothing.  I remember distinctly at one appointment my doctor said the word “fibromyalgia.”  I never heard it before and I thought he was speaking some strange doctor language.  He must have seen the confusion on my face because he reached over and tore a piece tissue paper from the exam table and wrote the word down for me.  I asked me if I had internet access, and I did, so he told me to start researching.  Although the medical community was starting to recognize fibromyalgia a lot more than they ever had before, there still wasn't a lot of information available.  

During this time, I would often see excellent Nurse Practitioner rather than my doctor.  Early on we were talking about pain and the NP asked me “Does the pain move around?”  I was flabbergasted!  What a crazy notion!  Why on earth would pain move around?  Was she checking to see if I was crazy?  Was I a hypochondriac?  Actually, I had never thought of that way (because that would be CRAZY!) but, yes, the pain did move around.  It was then that I began to realize all the pain and injuries I thought were unrelated, were actually fibromyalgia.  Although it would be a few years before I was  "officially" diagnosed, now we knew what we were facing.

I wanted to write this first blog about how I got to where I am now.  However, when I went over three pages in a Word document, I thought that was probably too much for one entry.  After all, I wouldn't read a blog that long, so I can't expect anyone else to slog through it!

There is no way for me to write anything about my life without discussing my chronic illness.  It effects every minute of every day for me and my family.  So I thought I'd start by writing about life just before my symptoms started and how I got to where I am now.

Part One

In June of 2000, I was healthy, young 23 year old preparing to marry the man of my dreams.  I never thought I would get married, let alone to Derek.  He was the man wanted.  He made me laugh and understood me in a way no one ever had.  He was my very best friend.  But, our relationship had been so "will we? won't we?" that I had given up altogether.  Needless to say, we both came around.

So, eleven years ago I was making final wedding preparations and looking forward to our happy life together.  I just knew everything would be perfect!  We would never fight.  We had both just graduated from college, and were planning on returning for our Master's Degrees.  Money would be tight in grad school, but after that we'd have plenty of money.  After all, we were both well educated and eager to work.  We would find good jobs, save our money, get involved in a church, and in about 5 years we would start having children.  It was a very good, very responsible plan.  With all hope for the future, and an overly generous helping of naivety, we started our life together.  What we would soon find out is that our plan, though good and responsible, was not God's plan.

Six months into our marriage, we were taking grad classes, teaching, involved in church, and maintaining a social life when I started to not feel well.  A pinched nerve in my back flared up causing quite a bit of pain. I remember spending Christmas break at my m-i-l's house in PA and feeling like I had the flu.  In January I went to the university clinic and the doctor diagnosed "malaise and fatigue" and really didn't know what was wrong.  This was also when I started having heart symptoms.  After a battery of tests, and weeks of wearing a heart monitor we found that my heart was healthy.  I started missing classes and work because I was so tired I couldn't get out of the apartment.  As the weeks progressed, I was chewed out by my boss, and told politely by my teachers that I just wasn't trying.  I remember lying in bed at night, almost asleep, when the air conditioner would kick on and I would jump so hard it woke up Derek.  My heart would pound so hard and so fast I thought I was actually dying.  The doctors were clueless so they diagnosed it as stress.  This was always the diagnoses I got at that clinic.  If you weren't having a baby at this clinic, you were suffering from stress.

Still, our plans for the future were unchanged.  I was young, and had been reasonably healthy up to this point.  We were sure that we would find the right doctor, get a proper diagnoses and treatment would take care of the problem. It was just a speed bump or so we thought.