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An Anonymous Struggle

October 2, 2013

cryingThe month before I turned 32-years-old I married my bashert.  One and a half years later we had our first child – a daughter.  This was a dream-come-true.  I’d always wanted a little girl since I myself was a little girl!  I also wanted a sizable family of four or five children.

A month after I turned 35 we were blessed with another daughter.  They are the best of friends to this day and I ask Hashem to always help them maintain this connection.

By the spring of this past year my husband and I had hoped to add another child to our family.  It appears that it’s not in Hashem’s plan for us right now.  What seems to be on the agenda is my finding a working treatment for a medical condition that emerged and is still being understood.

I remember carrying my second daughter up the stairs to our front door and feeling the first bursts of pain in my forearms.  What do you expect?  I had two kids close in age and that puts a lot of wear and tear on our bodies.  That must be why I have this tearing pain.  Three months later the pain has spread to my elbows.  I see my internist.  She sends me to a physiatrist (aka a rehabilitation doctor).  The pain is spreading.  I now have carpal tunnel and shoulder pain, as well as pain all throughout my arms.  Folding large items of laundry, such as bed sheets and towels, hurts the outer part of my upper arms.  And I continue deteriorating from there.  Back pain, hip pain, knee pain, ankle pain, foot pain.  Seven months since my original forearm pains and I’ve now started to feel weaker and more tired.  One month later my energy falls away.  My husband begins to miss work to stay home and care for our children while I’m bedridden all day.  I’m working part-time three days a week.  I ask a colleague if she can pick me up and drop me off.  I don’t have the energy to drive in addition to actually performing the work on the job.  If she can just get me there I can fake it.  One day I feel particularly dizzy at work.  I grab that colleague and tell her what medications I’m on just in case I pass out and an ambulance is called.

What’s wrong with me?  My internist runs labs.  Blood work comes back positive for Lyme Disease.  I’m so happy.  I’m crying over the phone to the nurse.  It’s such a sense of relief to finally have a solid diagnosis.  I’m put on a strong course of treatment.  I’m told to also see a cardiologist.  Somehow I’m getting worse.  More days in bed.  More days my husband misses work.  I see two different infectious disease doctors who request more blood tests.  I keep coming back borderline positive for Lyme Disease, but upon examination by each doctor, they say I don’t have this disease.  They tell me to keep looking.  See a rheumatologist.  I see two of them.

Doctor #8 keeps me waiting for an hour and a half in her exam room.  She comes in with a laptop.  She takes my entire history and asks me random questions.  An hour and change later she tells me she thinks she knows what I have.  I’ll need chemotherapy to treat it.  Not the infusion type, though.  This is in the form of pills I can swallow at home.  Get some x-rays, speak to my husband about the treatment, come back and see her in a couple weeks.  But, doctor, will I be able to have children on this medication?  No, but you won’t be on it forever.  Probably 6-9 months.  Okay, that’s workable.

Fast-forward past the hair thinning, indescribable mouth sores, extreme dehydration, and other side effects of this chemo drug.  Six months into it I begin to get energy back sparingly.  First it comes back for two days and then plummets again.  Next week it comes back for three days and plummets again.  Slowly, slowly, I’m getting further with my energy.  I’m making it up to two full weeks with productivity in my life again – yay!  I can take my kids to the playground and stand up by their side as they climb and balance and run around.  I can help them like a parent is supposed to.  I’m still in pain and I need so much physical therapy and occupational therapy, but I have energy to tackle my day again.  Memories of my husband having to stay home and help me are now fuzzy.  With every appointment with my rheumatologist I ask her when I can go off the drug.  She said 6-9 months and now it’s been nine months, ten months, eleven months.  We still want to have at least another child.  I’m 38 now.  Why do I still have pains and when can I go off this drug?

December comes around.  I’m getting tired too easily again.  Slowly the floor falls out on my energy again.  I tell my doctor this.  She insists the medication is working.  My pains are continuing to get worse.  My problem areas are spreading.  What’s going on?  Are you hearing me?  Why are you arguing with me that the medicine is working?

April now.  I see doctor #9.  He is frum like we are.  He hears my profound desire to have at least one more child.  He weans me off the chemo drug.  He switches me to self-injectable medications that will allow me to be pregnant once the chemo drug gets out of my system in six months.  But, I can’t believe how much this injection hurts.  I accidentally pulled it out too soon from the shock of the pain.  My friend is a nurse, maybe she’ll give the injections to me.  They’re still too painful.  Three weeks in and I have an adverse reaction.  I run to the doctor.  He’s never seen anyone react like this before.  Get to the pharmacy with this prescription and get on that drug right away.  This would escalate into me going to the hospital otherwise.

Okay, all under control.  One week later show the doctor that the reaction is all gone.  New drug.  Another self-injectable.  My nurse here will administer it for you.  Ouch, this one is as bad as the last.  So painful.  I don’t know how much of this I can take.  Wait a minute….is that a migraine headache coming on?  Every single day these headaches keep coming back.  Now I need a prescription for migraine medication.  I hate the needle and I can’t care for my kids or home with these headaches.  Doctor, I can’t continue this drug.  We still want to have another child, but let’s put that on the back burner.  I can barely take care of the ones I already have with this illness.  I just need to focus on what will get me better.

One last option for you.  Infusions.  They’re two hours each.  You come here to receive them.  Fine.  Let’s do that.

Now I need some time to myself.  I need to mourn that I’ve just tossed aside the plan of having another child.  You know, I’m not the best mother to the ones I have anyway.  I’m not a terrible mother at all, but there’s more I could do for them and with them.  I could speak more gently and patiently.  I can include them more in the kitchen and household work.  I can adore them more and schep nachas from them more.  Maybe Hashem doesn’t feel I should have another child if I’m already taking these two for granted.

I cry my eyes out.  My heart is crying, too.  My husband agrees that we have to put the thought of another child on the side.  Perhaps it’s not in our future at all.  We win either way.  Two healthy girls already.  We’ve won a jackpot.  Maybe another child in the future after I’m 40.  We win if I’m able to do that, too.  We’re in agreement.  Sigh.  Let’s move forward.

But with every adorable toddler we see, our hearts break.  My husband begins saying it more and more, “I want another”.  In reference to our girls, “They’re getting so big.  I want more.”

I’ve resigned myself to whatever fate Hashem gives me.  My heart hurts from the tears.  If I get cured, I can have a child maybe when I’m 41 or 42.  If I’m not cured or I need to remain on the infusions long-term, no more children whatsoever.  It comes from Hashem.  It’s all for the good.  Maybe if I’m gracious about it then I’ll get my heart’s desire in the end.  But, again, either way we win.  Hashem has been enormously kind to us already.

- Anonymous