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Insomnia: Five Things to Do to Pass The Time

It’s the middle of the night, and you’re wide awake.  After a few hours of trying to get the rest you desperately need, you’ve come to the realization that you won’t likely fall asleep before dawn.  What do you do?  Do you lay in bed listening to the ticking of the clock? Do you get frustrated as you think of how tired you were just a few hours before?

 

If you’re anything like me, you need a distraction.  After a while, I get restless thinking about how my insomnia will affect the next day.   As I sit here at 3:24am, I decided to put my bored, sleep deprived brain to work on an important project; I’m making a list of things to do when I can’t sleep (In no particular order).

  1. Make Lists: See?  I’m starting this one already!  This will be the first of many lists I’ll make in the next few hours.  Most of my insomnia comes from the racing thoughts in my head.  Taking the time to write all of it on paper gives me a way of getting it all out.  Maybe the next list I’ll do will be topics for future posts.  I can always use inspiration in that department!
  2. Read War and Peace: As much as I like to read, this book has always bored me to tears!  I fell asleep reading it in high school several times.  Maybe I should buy another copy for nights like this.
  3. Take a Long, Hot Bath:  That sounds like such a fantastic idea!!  Too bad I have a hard time getting out of tubs when I’m finished.  I might have to opt out of this since my cries for help might not be heard for quite a few hours.
  4. Acupuncture:  I hear this works well for a lot of people.  Only problem is, insurance won’t pay for it.  Maybe I should look for do-it-yourself instructions online.  I have a lot of pins in my sewing kit, so I’m half way there!
  5. Counting Sheep: I list this for those of you who don’t have any sheep trauma in their past.  I can’t do this – it brings back scary memories of helping my ex-husband wrangle those sheep on his family farm to be sheered.  Those sweet little angels had no problem slamming me into the wall when they didn’t want to participate.  Counting them in my head just brings on nightmares of being surrounded by angry, furry creatures!

Question: What do YOU do to fall asleep?

 
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Posted by on May 21, 2014 in Life Challenges, Random Thoughts

 

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Is It REALLY Drunk Driving in the House?

Well, the obsessive part of my personality is having a FIT right now!  Why, you ask?  Well, it all started with the need to get from room to room…

 

For the last few years, my body has decided it doesn’t always want to cooperate.  It doesn’t care if I need to sit up, stand up, or walk.  Sometimes it just refuses to comply.  On good days, I walk with a cane, which helps me maintain balance.  Other days I can’t take the 15 steps from my bed to bathroom with a walker.

I mean, REALLY??  Who thought it’d be a good idea for a person without a colon to struggle to stand and walk to the bathroom?? Sick joke if you ask me!

Oh, and did I mention that I’m a huge fall risk?  I tend to fall a lot; much more often than even my family realizes.  It takes me a while, but most times I figure out a way to get up before anyone knows, but there have been times when Sam will come home and find me on the floor. It’s not ideal, but I have always figured it was just part of the disease.

 

Sam has been my gracious ‘assistant’ when I get stuck for a few years now.  She’s helped me into the bathroom more than once, cooked when I couldn’t get into the kitchen, and generally taken care of me during some pretty challenging flares. While I appreciate her loving help, I really do need more independence. That is why I started the process to get a power chair to use on those bad days.

 

Fast forward to today.  While we’re still working on getting approval from the insurance company, the medical supply company delivered a loaner for me to use!  I still don’t have a lift for the car (because, let’s face it – who has $3,700 sitting around with all of these pesky bills to pay), so it’s for use in the home and around the neighborhood for now.

Problem solved, right?

Hmm, not quite yet.  Once the tech left, I thought I’d try to get used to the chair.  I’m relatively functional today – at least for me.  It’s better than trying it out when my whole body is screaming.  So I sat in the chair and started zipping around the living room and kitchen.

Going forward isn’t too difficult!

 

Turning is surprisingly easy!

 

Going backwards….well…let’s just say it’s a lot like backing up while towing a trailer – something I’ve never done well!

Why in the world do you have to push left to go right when backing up?  I know, it’s been explained to me before, but my muscle memory does NOT want to believe that left means right and right means left!

I kept the speed on low, and soldiered on.  That’s when the real tragedy began.

My bladder started screaming, so I figured it was time to see if this awesome chair could get me into and out of my bathroom.  The first obstacle was getting through my bedroom door.  I stopped in front of the door, turned the handle, and pushed it open.  So far, so good!  I started to power forward, and realized I was at an angle.  I needed to back up and straighten up so I didn’t hit the door frame.  I started getting cocky! No problem!

Uh oh!  Problem! Problem!

Even on the slowest setting, I somehow managed to spin the chair sharply to the left.  The foot plate slammed into the door frame.  UG!  Well, at least it didn’t leave a mark.  I tapped the joystick in the opposite direction to try once again to straighten out, and things seemed to be going well.  I moved the joystick forward, proud of my accomplishment, when…

CRAP!  The armrest screeched loudly as it was dragged across the door.

My beautiful white door now has a big black streak.  The black armrest has my lovely white paint on it’s side.  This is when my obsessiveness kicked in.

Crap! I need to fix that before our BBQ next month!  It’ll look wrong!  Do I have any paint?  How can I find matching paint?  Crap!

I sat there for a few minutes, pretty angry with myself.  Then my bladder reminded me that I needed to keep moving.  Not ready to give up my quest (and because my cane was in the other room), I continued my mobile mission.  I went around the bed successfully, then turned toward the vanity.  I cleared that doorway, and the doorway to the bathroom itself seamlessly.

YAY ME!

On the way out, I managed to back out and turn around with no collateral damage.  I was proud of myself!  Maybe that was my one and only accident….

BANG!

I was so busy congratulating myself, that I didn’t see the end table in front of me.  The lamp, medications, and water bottle all flew back and smashed into the wall.  At that point, I was just happy I made it all the way back to the living room without tearing the house down!

 

LESSON LEARNED: It’s okay to make mistakes.  It’s even okay if the paint is chipped.  Sometimes learning takes time.

WHAT GOOD CAME OF THIS: Maybe it’s a good thing that I have to wait to take this thing into crowded public places.  I obviously need more practice!

 
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Posted by on May 19, 2014 in Life Challenges, Mobility Challenges

 

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What’s So Funny?? You’re Going to be LATE!

One night this week, I was completely overwhelmed with exhaustion at around 5pm.  It wasn’t from the busy activity of the day, or the lateness of the hour, just that drop-me-to-my-knees, falling-asleep-while-walking, fever-inducing form of tired that comes with being a walking carrier of inflammatory autoimmune diseases.

 

I tried EVERYTHING! Sam and I made a healthy dinner, I played a couple of computer games, watched the news, tinkered with a project, etc.  It didn’t get better.  In fact, I kept nodding off in the middle of everything I did.  By 5:30, I caved.  I went into my room to get comfortable.  Maybe it wouldn’t hurt to close my eyes for a few minutes…

 

Just a few minutes…

 

My eyes popped open, and I looked at the clock.  CRAP!  It’s 7:45!  The dog was whining to get out, and I could hear Sam milling around.  It was almost 8:00am, and she was going to be late for class!

  • ME: Sam! You’re going to be late!
  • SAM: Huh?
  • ME: It’s 7:45! Don’t you need to get ready?

Sam burst into a giggle.

Then I figured it out.

  • SAM: Mom, it’s 7:45PM, not AM!
  • ME: DOH! That must have been one awesome nap!
 
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Posted by on May 17, 2014 in Medical Humor

 

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Through the Looking Glass

In the digital age, we can keep up with just about anyone, right?  That friend you played with in Kindergarten is back to BFF status after a Facebook chat and a series of liked posts.  The party buddy you got in trouble with in High School can now exchange stories with you about kids and grand kids. It’s like one great big, awesome friendship circle.

 OR IS IT?

For me, my Facebook friends are a 40/30/20/10 split:

  • 40% are people I from my past that I happily chat with on a regular basis
  • 30% are new people that I’ve consciously added to my circle of friends
  • 20% are those who I THOUGHT I wanted to reconnect with, but later realized we no longer have a single thing in common. – AWKWARD
  • 10% are so ridiculously successful, beautiful, and inspirational, that I vacillate between admiring their spirit and hating them for never having a bad day.

Come on, admit it!  Your list has a similar split.  Especially those of you who are sick.  While it’s wonderful that some people have the perfect job, relationship, 2.5 kids, car, and hundreds of best friends, the steady stream of “My Life is Perfect” posts can break down my self esteem on a rough day. I mean, come on!  Am I the ONLY one who has a bad day from time to time? It sure would be nice to read REAL posts occasionally instead of the Hallmark version of their lives. I’m a flawed human being with flawed kids.  Could it really be true that this 10% of people have found that wonderful state of Nirvana that seems to elude me?

I really spent some time this evening contemplating that possibility.  What do they know that I don’t?  How do they manage to side-step the potholes and drop-offs that we mere mortals seem to encounter?

But wait! Have I become what I mock?

I’m someone who proudly strives to look at my life objectively and take responsibility when necessary. So I put on my detective hat and looked through the last two months of status updates.  Crap! Every single post was littered with silver linings and happy moments.  There was not one fully honest post about the pain, frustration, depression, fevers, or loneliness that has peppered my life recently.  Then it hit me:

MAYBE the 10% on that “frenemy” list is actually doing the same thing.  Maybe their lives aren’t as perfect as they seem.  Maybe we all are just doing our best to focus on the good in life instead of dwelling on the rest.

My question is this:

How would things be different if we were all 100% honest on Facebook?  Would we respect the candor, or would we mock people for being drama queens?  Would we provide support and love, or scroll past the negativity?

What would you do? I would hope I’d be as kind online as I try to be when my friends are reaching out to me on the phone or in person.

Lesson Learned: Maybe we all sugar-coat our lives online because we fear we’ll be mocked if we don’t.

 
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Posted by on May 15, 2014 in Life Challenges, Random Thoughts

 

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Nice, Mom, Turn the Hose on Me!

People have asked me where I learned my sick and twisted sense of humor. The simple answer is my mom. She has the uncanny ability to pull off the smart-ass one liner with a straight face. Better yet, she has such a wonderfully innocent looking face, that makes it unbelievable that she could possibly be up to no good.

 

Mom has a special way of motivating people. I’ve seen it in every aspect of her life. Even well into my adult life, she has always had a special knack for getting her point across in a way that makes me think it was my idea to change my mind. This was certainly frustrating as a teen, but I’ve learned to appreciate it lately.

 

Back in 2003 when I had my colon removed, I fell into a bit of depression. I hadn’t expected I’d have such a strong reaction to getting rid of an organ that was trying to kill me. Embarrassed by the temporary ostomy bag, I didn’t want to leave the house. My unspoken plan was to stay hidden in the house until my second procedure was done to take away the bag. It seemed reasonable to me!  I was so afraid the thing would leak or break in public, that I could think of no better solution.

 

Mom graciously agreed to stay at my house to help me recover from that brutal surgery. She kept the girls busy by taking them to the library, getting them to and from school, and even cleaning their room. Every couple of hours, she’d ask me if I wanted to go somewhere. She offered to take us out to dinner, and I said no. She offered to wheel me in a chair through the mall for a change of scenery. I said no. You get the point; I had no intention of leaving the house unless it was to get to a doctor’s appointment. To me, it made perfect sense. Why should I leave? I had everything I needed right there at home.

 

Well, almost…

 

The girls and I lived in a 2 bedroom townhouse. The bedrooms and a full bathroom were upstairs, and the downstairs had a living room, kitchen, and half-bath. Since I couldn’t get upstairs, I was camping out in the living-room-turned-bedroom. The one thing missing was a shower. I had no way to bathe other than sponge baths until I could make it up the stairs.

 

Now most people could deal with just a sponge bath while recovering. I wasn’t one of those people. My exceptionally thick and curly hair reached the middle of my back. Even with all of the doors closed, the 100+ degree Sacramento heat made it impossible to keep the room cool. On top of that, I had a pretty persistent fever. My hair was a matted mess! Short of shaving my head, I had to find a way to wash my hair on a regular basis.

 

We tried washing it in the kitchen sink, but I just couldn’t bend enough to get my head under the faucet. Mom saw this as an opportunity to get me out the door:

 

  • MOM: How about this – I’ll take you to Supercuts to get your hair washed every other day.
  • ME: Thanks, but I don’t think so. I can’t do that.
  • MOM: Why not.
  • ME: I can’t

 

Then I’d start to cry. I did a lot of crying that year.

 

Every day, she tried to talk me into going to Supercuts. Every day I would decline (and cry). It finally hit a breaking point. My hair was gross and itchy, and I knew we had to do something. Finally, she did what mom’s do. She gave me a choice:

 

  • MOM: Okay, I know you don’t want to go, but we HAVE to do something with your hair! Either I take you to Supercuts, or I have to wash it with the garden hose.
  • ME: (Thinking I’d do anything to stay secluded) Fine. Let’s use the hose.

 

Now you’d think that the cool water from a water hose would feel pretty good when it was 106 degrees outside. Well, it didn’t with a fever! I sat in a lawn chair that reclined slightly. Mom grabbed the hose and started spraying my head. I shook and swore like a sailor. She couldn’t help herself – she started laughing at the tantrum-like fit I started to throw. The more I protested, the more she’d giggle while shampooing my head and rinsing it with that damn hose! Eventually, I was laughing right along with her.  Of course my laughter was peppered with a little more colorful language.

 

Even though I was cold, I had to admit it was nice to get the sweaty grime off of my head. That said, the next time my head got grimy, I gratefully got into the car and went to Supercuts. Point for you, mom!

 

To this day, she threatens to turn the hose on me if I get stuck in that state of self-pity.

 

 
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Posted by on May 12, 2014 in Life Challenges

 

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Isn’t it Ironic?

As I had another visit from the insomnia fairy last night, I got to thinking about the irony that is my life.  Here are a few things I found most interesting:

  • My only good hair days seem to happen when I’m home-bound
  • With autoimmune diseases, the only way to feel healthier is to kill the body’s immune system.  Killing the immune system makes me more prone to illness.
  • I have one health issue that requires me to go to the bathroom every couple of hours round the clock, and another that makes it hard to stand and walk – especially in the middle of the night and early morning. 
  • I’m not able to absorb all of the nutrients from food, but seem to have no problem absorbing all of the calories and fat.

What do you find ironic about your illness(es)?

 
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Posted by on May 6, 2014 in Random Thoughts

 

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Taking Control

I have a little confession to make.  For a few months I cancelled all of my medical appointments.  EVERY SINGLE ONE.  That’s right – no internist, gastroenterologist, urologist, rheumatologist, cardiologist, surgeon, or physical therapist.  I’ve cut out half of my pills, and ignored all of the lab requests.  Truth be told, I wouldn’t even drive past the offices for fear that I’d rat myself out and make an appointment in person.

Did I lose my mind??

Not exactly.  Let me start at the beginning…

Way back in February, I went on a women’s trip to Disneyland.  I knew that traveling without my daughter would be more physically taxing than was wise, but I did it anyway.  (Remember: 2014 is my year to step out of my comfort zone?) I met a lot of fantastic women, and had a lot of fun while still taking it easy quite a bit of the time.  I was able to pace myself, and didn’t overdo it too much.

About a week after I got home, I developed a nasty case of the flu.  Was I surprised?  Not really.  I’d been on two germ-filled airplanes in four days, and wheeled myself around a crowded (and rainy) theme park with sniffling and sneezing people.  While I had NO regrets, I did have a tough time shaking the illness this time around.  I was well into week two when I realized I had missed a rheumatology appointment.  I left them a message, apologizing for the mistake and promising to reschedule soon.

Then it hit me…

Maybe I wouldn’t call back for a while.  The previous four appointments were a waste of time and money since I can’t take the the AS meds until my abdominal wound stayed closed.  It had opened back up a half dozen times already, so I wasn’t comfortable starting them yet anyway.  I’d go and the doc would be frustrated because there was nothing he could do.  I was saving us both some grief by not going yet.

Then I got a notice in the mail from the cardiologist.  They got to the root of the problem with my heart rate.  They had a name for the problem, but no treatment.   At the end of the letter, I was instructed to call and make a follow-up appointment.  If there was no treatment, why did I need to go in for another appointment?  I threw the letter away.

With each doctor, I had similar thoughts. What was the point? Only two things ever happened in appointments lately:

  1. They knew the problem but couldn’t treat
  2. They found a NEW problem, which required more testing

Now I’m not normally a conspiracy theorist, but do they keep calling me back to pay for their beach houses?  Maybe they have kids in college and the money’s running out. Obviously I’m only kidding here – I don’t think any of them would actually do that. It’s just that I’m starting to feel more like a lab rat than a patient lately.

A bit of a side note: Isn’t it ironic that the word “patient” is used to describe someone who needs medical treatment AND someone who is having to wait endlessly without complaining?  I don’t think that’s a coincidence!

One by one, I cancelled all of my appointments without rescheduling.  THE SKY DIDN’T FALL!  I was no better or worse.  I was still sick, still in pain, but had a bit more money in my pocket.  Hmm.  Maybe I was on to something! I decided to push the envelope further and ween myself off of some of my meds that weren’t working for me.  I kept the ones that helped, but there were many that were given to me to correct a problem, and didn’t do the job. I did all of this knowing that I’d eventually have to explain this madness to my docs.

Well, since I didn’t have any appointments, it was no problem, right??  I didn’t like their plans, so I made my own. I would love to report that by snubbing the medical community, I was miraculously healed.  I’d love to, but I’d be lying.  By April, I couldn’t avoid my internist any longer.  I needed hydration, a port flush, and a signature on an insurance form.  I was dreading the appointment because this doctor tends to run hot or cold.  Either he was very supportive and helpful, or curt and a bit of a jerk. Once he knew what I did, he could really lose his mind.

I made an appointment for mid-April, and was surprised by how scared I was!  Who was I to go against the orders of a DOCTOR?  My mind went to the worst case scenario.  I imagined him yelling at me and firing me as a patient before badmouthing me to the other doctors in this small town.  Who would see me if I didn’t do what I should?  I steadied my nerves and left for the appointment.

Remember when I said only one of two things happened at every appointment? 

Apparently in my absence, the Jekyll and Hyde doctor had been reviewing my records.  He had a new theory.  I needed to have more tests to determine if I had yet another disease to add to my alphabet soup of diagnoses.  The only good news was he didn’t get mad about my medication experiment.  In fact, he thought it was a great idea!  Go figure!

So now I am scheduled for another battery of tests.  I knew my medication vacation was too good to be true….

Lesson learned: Sometimes it’s a good idea to take a break and re-examine the path we are on.  That being said, there are times we have to go through the motions, even if it’s uncomfortable.  We need to trust the professionals, but not to the point of losing common sense.

 

 

 

 
 

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