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Monthly Archives

August 2012

Sun sensitivity in lupus

By | Symptoms | No Comments

 

Leaving my house these days takes almost as much energy as actually going out.  It is pretty complicated due to the fact that I have sun sensitivity issues related to the lupus.

Until last year I didn’t even know that I had any sun issues.  I happily would hang out at the beach and never have any issues.  But when I was in Kauai with the fam I noticed that my fingers were turning red and blistery.  They burned and hurt a bit.  I still didn’t relate this to the lupus.  When I came back I went to my regular rheumatologist feeling ill with joint pain and fatigue.  He visit he took one look at me and said, “You have been in the sun.”.  Doh, foiled again by that darned lupus.

Turns out that photosensitivity is a common issue for lupus cases and I am not anything special in that regard.

How does photosensitivity show up in lupus?

  • Sunlight can cause new skin lupus lesions (sores).
  • Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
  • Some medications increase the effects of the sun on a person’s body. People with lupus taking these drugs including tetracycline antibiotics and many others may also very occasionally develop “phototoxic” reactions.

Back to the issue of getting me out of the house in this California sun.

Basically it takes a lot of sunscreen, SPF 50+ (I prefer 70), slathered on every inch of exposed skin.  On top of that I try to cover up my arms and legs with t-shirts and pants.  Gone are the days of short shorts.  I have to remember to cover the tops of my feet if I am wearing shoes without socks.  I try to bring a hat.  Thankfully for me, San Francisco is pretty kind to this type of dress.

When I am out, I do my best to hide as much as possible from direct sunlight.  I seek out shady spots.  I try to not go out in peak sunlight hours (10am – 2pm).  And I reapply sunscreen often.

I know that when I write this out it sounds like a giant hassle, but it isn’t so bad once you get used to it.  My thought is that everyone should probably be wearing sunscreen all the time anyway.  I figure that when I am 90 and all of you have skin like a dried out onion, I will still be looking 35 with soft beautiful skin.  And then the hassle will all be worth it.

What is Wrong with Nerdgirl?

By | Personal Journey | No Comments

I know I haven’t fully disclosed what is going on and why the chemo and all the other rehab and hospital visits.  It is really, really hard for me because it is the most frightening thing I have ever had to deal with in my life. So to say it out loud (or blog it) is a tough one.

Background

I was first diagnosed with lupus when I lived in Spain.  My symptoms at that point were the occasional swollen hands or fingers turning blue when it was cold.  All things I could and did live with for a long time with no other symptoms.

When I moved back to the US a few years ago to start Grows Up everything changed.  My beautiful long hair started to fall out in clumps.  I started getting random red spots on my body.  It was pretty horrible stuff and very stressing.

I went to a rheumatologist at UCSF and we began this long path that got slowly and progressively worse.

First Hospital Stay – Transverse Myelitis

In June, after months of fighting random fevers, rashes, extreme fatigue, urinary issues, etc… I finally ended up in the ER.  This kicked off a 2 week stay.

During that stay I collapsed on a nurse when I was walking down the hallway. My legs had given out.  I could basically barely move and everything from the waist down was numb and tingling.

This turned out to be transverse myelitis something that is rare (only about  4 cases in a million reported each year), but also very devastating for many people.

It is a neurological disorder caused by inflammation across the spinal cord.  When it finally sets in it causes some type of paralysis.  In the very extreme cases it travels upwards shutting down the ability to breath making people paraplegics.  Thankfully I was lucky and everything was from the waist down.

I was diagnosed, release and began to try to rehab.  I went quickly from not walking, to walker, to cane and the numbness began to subside a bit.

At that time, the doctors decided that I should do a course of chemo to really put the lupus back in check.  The chemo would be followed by another immunosuppressant drug called CellCept that I will continue on with.

Second Hospital Stay – Brain Seizures (Frontal vs Temporal Lobe – The Battle for Control)

Then at the end of July, I woke up one night and was frantic.  My mom has been staying with me since June because I am too weak, tired or mentally confused to do many things for myself. I couldn’t get back to sleep that night and ended up calling an ambulance in the morning.

Another week spent in the hospital and this one was much much worse than the first one.  I don’t remember most of it.

The doctors were stumped as to what was happening to me.  I had about every team in the hospital trying to figure it out.  Cardiology, neurology, rheumatology, psych and more visited my room twice a day.  I had MRIs, CAT scans, blood test for everything (including ebola).  Still no one could figure it out.  I am told that I didn’t sleep the entire time.

Finally, they concluded from an EEG (brain monitor) that I was having severe brain seizures of the frontal and temporal lobes caused by the lupus.  I was put on a medication and within 30 minutes I was coherent again.  And scared to death.

I hope to never experience something as scary as losing my mind again.  I had moments during that week where I would be coherent and know that something was going on and all I could do was cry because I was so frightened.  Thankfully I had my mom there the entire week.  I can’t even imagine how scary it was for her to see me go through all of that.   Mark would come and relieve her during the nights and just hold me and reassure me while I cried and cried.  Words can never express how grateful I am to both of them for comforting me that week and still.

The Future

I’ve been out now for a few weeks and faithfully taking my anti-seizure medication.  At first it caused confusion, but now it seems to be mostly regulated in my system.  I am still weak and tired, but getting better every day especially with the help of my family and friends.  My new job has been amazingly understanding and I am also grateful for them.

All of this has been emotionally traumatizing, but I am finding the positives in it.  I really do appreciate so much more than I did before.  I look forward to a bright future that involves a lot more love and a lot more interesting things.  But not to worry, I will always have that bitchy Nerdgirl charm to throw at you.

And, by the way, I’m not listening to Nickelback for inspiration.

Chemo-tastic

By | Personal Journey | One Comment

Me fighting!

Today was the second trip for chemo.  Once again, the trip was pretty easy.  The typical day goes something like this.

  • Arrive at appointment (mine at always scheduled for Mondays at 1:00pm)
  • Check in at front desk
  • Get vitals done (height, weight, blood pressure, etc.)
  • Wait for a bed or chair to open up, then your nurse of the day comes to get you
  • Get set up and they run through everything you are going to do for the day
  • Get IV put in
  • Sit for however long it takes for all the treatments

It is pretty amazing how many people are in there.  You can tell the seasoned veterans who are on regular chemo treatments nearly every day.  Everyone is really nice and caring.  The nurses are all very sweet and have conversations with everyone.  They remember every detail that you told them last time and genuinely care about their patients.  Very heartwarming.

You would think that going to the infusion center might be depressing.  Honestly,  for me, it is the opposite of that.  From my perspective, I see people who are fighting the battle for their lives and winning (at least from a positivity point of view).  It makes you realize that we as humans, despite all the bad in the world that we have created, are also amazing and resilient creatures.

Fight on!

My Desired Things

By | Personal Journey | No Comments

by Max Ehrmann

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.