Single Awareness Day (also known as Valentine’s Day) is upon us!  Relationships (or the lack there of) are on the mind.  Relationships are hard.  Romantic relationships are harder.  Even for healthy people.  Having a chronic illness makes it that much more complicated.  It’s hard not to feel undesirable… broken.  I know the “right guy” will love me anyway.  I know the “right guy” won’t care that I’m 150 pounds overweight from being on Prednisone.  I know the “right guy” won’t mind carting my wheelchair or walker around on dates.  I know the “right guy” will love me for the walking pharmacy, allergy ridden, health disaster that I am.  And I have faith that the “right guy” is out there somewhere.  But until then I’ve written this song in honor of today…

Other Girls
by Lauren Soffer

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

No one to hold my hand
No matching footprints in the sand
No dinners in candlelight
No little love notes to write
Never get roses never get pearls
Love songs are for other girls

No chocolate candy hearts
No Romeo to play the part
No one to give me a good night kiss
No one to love and cherish hold and miss
Never get roses never get pearls
Love songs are for other girls

But don’t you get me wrong
Trade anything to sing a different song

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

Never get roses never get pearls
Love songs are for other girls

The recovery process after a long hospitalization can be long, boring, and frankly difficult on so many levels.  Yes, I said after a long hospitalization.  I’m pleased to share I’ll have been home three weeks on Monday!  And while being home is an infinite improvement over being in the hospital, it raises new challenges, frustrations, and disappointments.

I’ve been very limited in what I’ve been able to do for myself due to pain and extreme fatigue and lack of endurance.  I have a long way to build back up, and I have to be patient.  But I don’t want to be patient right now.  Right now, just walking to the bathroom and back is enough to exhaust me.  But I fantasize about walking around my family’s Hanukkah party on Sunday.  If I am even up to going at all.  I didn’t make it to my family’s Thanksgiving.  Another big disappointment.

Being sick I’ve missed out on so many important events.  Holidays, birthdays, Bar and Bat Mitzvahs.  Laying in bed it’s sometimes hard not to feel like life is passing me by.    I’ve lost so much and given up so much.  A million tiny and not so tiny disappointments.  Too much to count or quantify. But each a pain that runs so deep it sometimes threatens to swallow me up.  But there’s also so many things I’ve gained.  I just hope that it balances out in the end.

This isn’t one of those happy inspiring posts I often do.  Why?  Well, right now I’m not feeling happy or inspiring.  I’m feeling depressed and frustrated with the world.  Today marks the 8th week of my stay in the hospital.  From here on out I’m setting a new record.  I am just so done with everything.  I just want this to be over.  I just want to go home.  And I’m angry and depressed about it.  I’m tired of trying to have a positive outlook.  Right now I just want to kick something.

People like to tell me that I’m an inspiration to them.  And though I really appreciate the sentiment, I’m really tired of hearing it.  I don’t feel like an inspiration.  I feel like a young woman who’s dealing with way too many health problems as best she can.  I feel like when people say that they are placing me on a pedestal that I don’t deserve.  I didn’t do anything so remarkable except what it took to survive this the best way I knew how.

It’s a lot of pressure to be an inspiration.  Being an inspiration means you are strong in the face of uncertainty.  It means you are brave and positive and happy and fearless.  Once I’m an inspiration, I’m expected to continue to be so.  It doesn’t leave room to be angry or sad or frustrated.  It doesn’t leave room to just want to give up or have a melt down about it.  It doesn’t leave room to have a pity party.  It doesn’t leave room to have a good cry about it.  It doesn’t leave room to be a scared little girl.  It doesn’t leave room to be REAL!

I am tired of being trapped on this pedestal.  On the other hand I’m happy that my story helps people.  I really am.  But not at my expense.  It’s a balancing act.  I didn’t ask for it and I don’t want it.  I just hope I can get off of it before I fall off.

This is not an easy thing for me to confess, so please be kind.

I realized that I am afraid of getting better.  Not because I am afraid of being well; I want nothing more than to be well.  I am afraid of getting better because I am afraid that I won’t.  In other words I am afraid of disappointment.  I am afraid that I won’t get better in both the long and short terms.  I am terrified in fact.

I’ve been having a rough time emotionally with the new diagnosis of Myasthenia Gravis and this prolonged hospitalization (over 4 weeks now).  It’s been a grieving process.  Lots of different emotions.  Lots of tears shed quietly making it hard to breathe the oxygen coming through my nasal cannula.

But I’ve had a breakthrough as well.  My friend Monique and I had a wonderful discussion about all this out of which I created a new way to be in this experience of being ill which is to experience it as quite the opposite.  I created the possibility of being Creatively Courageously Embracing Health.  This means that I don’t have to be afraid of not getting better because I am Creatively Courageously Embracing Health.

Creatively Courageously Embracing Health

As I continue this journey Creatively Courageously Embracing Health, I have undergone 3 treatments of plasmapheresis.  The improvements have been huge!  I can move my legs again without the help of medication (though the medication further improves my strength levels)!  I can also breath a lot better and my voice is stronger as a result.  My doctors are deciding if I’m going to have 2 more treatments or if we are just going to stick with the 3.

Then begins the long process of rehabilitation.  Being weak and/or paralyzed for so long has really set me back, since I am Creatively Courageously Embracing Health I know I will find a way to get where I am meant to be.  I will courageously push to but not past my limits to recover and then I will creatively adapt the rest of the way so I will be where I want to be in embracing my health.

I just hope you will all embrace this possibility with me!

“Too young.”

That is a phrase I have heard a lot in different contexts since I’ve been dealing with chronic illness.  I’ve been told I’m “too young to be this sick”, “too young to have to use a wheelchair”, and “too young to have to use a walker”.  Most recently I was told I’m “too young to increase my dose of pain meds” by my pain management specialist.

I went to my monthly pain management specialist appointment last week.  I’ve been having a lot more pain some days lately.  Stabbing pain in my joints that wake me from sleep and make me gasp in pain when I walk (but yes I’m still walking 99% of the time!).  I went to my appointment with the hope that I would get some relief.  But my doctor felt that I am “too young” to increase my pain meds.  I left feeling disappointed, a little angry, and still in pain.

On one hand I understand her concern.  If I have to keep increasing my pain meds now, what will I do in five, ten, or twenty years for my chronic pain?  What will I do if I end up in the hospital with an acute flare of Autoimmune Pancreatitis which is extremely painful and no pain meds will work anymore?

But on the other hand, I’m in pain now.  And despite what people what people might say, the unfortunate reality is that I’m not “too young” to be in this much pain.  And my age doesn’t make my pain any less painful or any less valid.  And my age especially doesn’t make my pain any less deserving of treatment.

Overall I’ve been happy with my pain specialist doctor.  I’m grateful that she is willing to prescribe me pain medication at all.  I went through several doctors before her who flat out refused to treat me because of my age.

The crux of the problem I think is that chronic pain is invisible.  No one can see my pain.  My pain specialist doctor certainly can’t.  Only I can feel it.  However, though my pain is invisible, I certainly am not.  And I cannot let my invisible pain (nor any of my other invisible illnesses) make me feel invisible.

So what do I do?

I need to speak up for myself and advocate for myself more.  I cannot let myself feel intimidated about telling my pain specialist that I disagree with her decisions.  If I shrink back and keep this to myself, I make myself invisible as my pain.

I also need to share my experience with the people in my life, so they can understand what I’m going through.  I’m not talking about whining about being in pain, but, in the appropriate settings, tell the people in my life what it feels like physically and emotionally to be in my shoes.  Part of that is this blog.  Sharing my journey on this blog helps me feel empowered and lets me make my invisible illness visible.

The bottom line is I am “too young” for just one thing… I am “too young” to let this beat me!

This week is Invisible Illness Awareness Week!  Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love.  Help spread the word!