Friday, October 21, 2011

chapter 6: another day, another dollar

one of my favorite sayings is: "another day, another dollar."  in this case, i was just happy to have another day.  a fresh start.  one that didn't include being sick to my stomach.  i decided the sickness was due to the new medicine, stress and probably a few other things.  i decided to alleviate as much stress as i could and take only the necessary medication. i refrained from taking the pain pills if i didn't need them.  this seemed to do the trick and i was no longer sick. thank goodness!

i also noticed my over-all body pain was diminishing.  i was sore in places, specifically the connective tissue areas and small joints in my wrists, ankles, toes and fingers.  but i was beginning to feel better.  the swelling had also gone down in my joints.  i continued with the clean diet, acupuncture once a week and yoga when i could fit it in. i found comfort in the fact that i was once again in charge of my own domain.  my kids were back on their usual routine: school, dance, hockey, nap time, etc.  it was me who was driving them around, bathing them, packing their lunches and putting them to bed. i felt good to be moving around again.  i wasn't 100%, but i was better.

we got into a new routine. got up in the morning, took my medications and started my day.  i worked an occasion shift here and there - maybe 15-20 hours a week. but my primary focus was on my health and my family.  it felt good.  i often times stopped to ask myself whether someone was trying to send me a message.  was this their way of telling me to slow down?  my yoga instructor once said "slow down, whatever you're racing to catch up with just might catch up with you."  so true. i laughed out loud when she said that in class and shook my head.  she was so right.

something i noticed right away was the way my body felt being on these new medications.  within a week of taking the plaquenil i began to notice a burning sensation in my chest.  it would appear in the late afternoons.  almost like i was smoking a cigarette and the smoldering, heated carcinogenic smoke filled the top of my lungs.  it burned and it scared me a little bit.  

there was the insomnia.  prednisone is a stimulant.  with 2 young children at home, i woke up (or was woken up) early - around 6am, sometimes earlier.  halfway through the day i would be physically exhausted.  this is also where i learned what fatigue was all about.  when my 2 year old napped, i tried to enjoy a little shut eye along with her.  if i got a nap in the afternoon i found myself wide awake that night -usually until 4am.  then up again with my littles at 6am. wheww! that was tough. thank god for some good coffee. my colleague often joked about how much stuff she used to get done when she was on prednisone.  the rest of her family would be tucked in their beds and she would be working furiously.  i was beginning to understand what she meant.  the late night/ early morning hours was when i started blogging and editing my photos.  at least this was comforting to me; at least i had an outlet; something positive to focus on.  

i watched the calendar like a hawk; noting each day what was happening and symptoms i was experiencing.  i could not drink enough water.  it was like i was a camel.  the more i drank, the more the flames were stoked in my chest.  my eyes, nose and mouth began to dry over up.  chap stick and eye drops were a must and i never, ever left the house without a very large bottle of water - which was refilled often. my thirst was unquenchable.  at least my kidneys were getting their workout.  again, i was enjoying the freedom of having my mobility back and willing to put up the other stuff.

on october 2nd i was feeling good. my whole family decided to go to the miramar air show down in san diego.  this was a big deal for my family.  my father is retired navy, 20+ years and my youngest brother is currently a staff sergeant in the marine corps.  we are a military family and proud of it. my family - my mom and dad in particular - were a little worried about our planned outing, but i  was excited.  i felt confident that it would be fine; we would have a good time and most of all everyone would be together as a family.  these are the things i treasured most.  additionally we had ordered reserved seating and tickets ahead of time. what was the worst that could happen?  if i got tired, there were reserved seats waiting for me.  if we really had to, we could simply pack up the car and drive home but this was an outing i did not want to miss.  

the morning was beautiful; the sun was out early and it was getting warm.  the family passed around sunscreen for everyone to use and most of us sat underneath umbrellas to keep the sun off of us.  
while walking into the air show my husband turned and said: "well i guess we're going to test your photo sensitivity today."  it took me a minute to understand what he meant.
i looked at him.  "yeah, i guess so."  i said and shrugged my shoulders.  
photo sensitivity or "abnormal" light sensitivity is a factor with lupus.  i was about to get educated on this.

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