The New Normal – Living with a Chronic Illness


I have to come clean here.  I have to admit to the world – and probably more to myself – that I am a person with a chronic disease.  Yep.  There I said it.  I know that most of you know that I have lupus.  I mean, come on, it is the subtitle of my blog.  But I think that saying it and really understanding it are two very different things.

I have known that I have had lupus for a good many years since I was 26 and happily living in Spain.  I knew it, but it didn’t really affect my life on a day to day basis.  On occasion I would have swollen joints and in the extreme case, when my good friend Danny died and I was overwhelmed with grief and stress, more severe symptoms like fever and chest pains.  But 98% of the time I was pretty much the same Stephanie that I had always been.

Fast forward to three years ago when I moved back from England to San Francisco.  I started Grows Up and with that came stress.  I immediately began to lose my hair.  My beautiful luscious thick long black hair that had taken ages for me to grow.  It was scary to say the least.  Every day I would shower and more and more clumps of hair would appear in the drain.  I was powerless to stop it.  I blamed myself for going off of my medications and immediately started on hydroxychloroquine again realising that it would take at least 2 months for it to really kick in.  I kept on with the business and the stress.  I did notice that my thirst for going out had hit an all time low, but I assumed this was due to age and the heavy load I was lifting.

My hair got to the point of maximum thinness and I decided to cut it off.  I continued soldering on.  I went to Hawaii and noticed that I started to get really bad rashes on my hands.  I felt icky.  It wasn’t nice.  When I came back, the rheumatologist diagnosed me with sun sensitivity.  I was now allergic to the sunshine and living in California.

The business eventually failed but I admit that my heart was no longer in it.  My health was failing at a rapid rate.  The doctors were afraid that I had pulmonary hypertension (a fatal disease sometimes associated with MCTD).  I had no energy.  I felt guilty about letting the world down that included my friends that worked at Grows Up, the investors that had put so much faith into me, myself and my dreams.  I thought that my exhaustion might be from depression.  I figured that the aches and pains and sleeplessness followed by too much sleep was due to stress.  I assumed that quitting and taking a step back would fix everything.  And it did do a bit to stave off the inevitable.  I was on a downward slope that had gained too much momentum to hold back my body that was sliding down it.

Then I hit rock bottom.  I was diagnosed with transverse myelitis which cause nerve damage from my waist down.  I suffered severed brain seizure when the lupus went even further which caused hallucinations, sleeplessness for 6 full days and more  issues with my autonomic nervous system.  I had to go through chemo and am currently on strong immunosuppresents.

And I’m getting better.  I made it out of the other side.  The crisis is over.

So what is the point of this blog post to rehash of my suffering?

I guess the point is to say that now that the crisis is over I have had to face a different reality.  I had assumed rather stupidly that once the crisis was over I would be back to normal.  That this entire ordeal was something like a prolonged cold and when it was done, I would go back to feeling and being healthy.

Sadly, this is not the case.  My body has been through hell.  I went from practically starving to weighing 20lbs more than I ever have in my life.  My hair is coming back and my nails are on the repair which is a good thing.  My legs and spine still hurt like hell.  My feet burn from nerve damage.  I can’t pee without a catheter.  I can’t turn on the seat warmers in my new car because the heat on my spine hurts me.  I am exhausted every single day from the moment I wake up until the moment I take a nap until the moment I go back to bed for the night.  I wake up several times a night because the nerves in my bladder are annoyingly acute and like to alert me to the tiniest fraction of urine in my body.  I walk like a gimp with a cane and only in short distances before I am in pain AND exhausted.  I can clearly go on and on about this…but I’ll stop feeling sorry for myself here.

To top it all off I feel like a big fat lazy complainer.  I feel like I should be over all of this.  I feel like I have been whining for far too long about how awful this all is so I put on a happy face and tell everyone that I am getting better.  And I am.  I am getting better.  Better than almost dying.  But I’m not quite sure that my new better will ever be as good as my old normal.

Let’s be straight.  I’m not looking for pity.  That is the last thing that I want.  I’m not looking to make excuses.  I’m simply looking for a little understanding.  I would never have been able to put myself in the shoes of a person with a chronic illness or a disability without having lived through it myself so I get that it is hard to see someone who “looks healthy” and understand that there is more going on underneath it all.

So, if you know me in the real world and I can’t make it to certain events because I want to spend the evening in resting, please understand that if I could do it there is no other place I’d rather be than with my friends and family.  Don’t make me feel any guiltier than I already do about having to live this new normal and I swear my eternal gratitude and friendship to you for taking a moment to pause and give me a break.