Skipping the handshakes and the hugs

January 24, 2013

It’s the season of contagious viruses again.  I am amused that as I sat down to write about this, I realized it was almost exactly one year ago that I wrote a similar post.  The big difference now is not in the outside world, but in me.

One year ago, I wrote about how easy it was to catch those germs from other people, especially through socially-mandated handshakes.  What’s changed is that I’m ignoring the social norms.  Last week I avoided shaking hands when I should have, I backed out of a couple of hugs, and I stopped mid-high 5 as I remembered the germs.  Each time, the person was surprised, but a quick, “I have a lousy immune system and the flu is going around” took care of it.  I was amazed at how well people have been responding so far.  Every time I make plans with friends, I ask them if they think they might be coming down with anything.  They aren’t offended, and they understand why I’m asking.

I think the real test will be next week.  I’m going to an event where friends will want to hug and every new person I meet (and there will be many) will want to shake hands.  I plan to wear pretty lace gloves that have been sitting in a drawer just waiting to be worn.  They’ll be a bit of a barrier.  Still, I will try to avoid hugs and handshakes.  I hate to tell people that I have a bad immune system, but simply saying that I’m worried about the flu makes me sound paranoid.  I could say I’m worried about the norovirus (which sounds worse than the flu to me in many ways!) but that’s probably no better.  When the time comes, I’ll figure it out.  But whatever I say, I know what I’ll do…. or actually, what I won’t do: I won’t risk my health by bending to social pressures.  Let the others shake hands and then pick up the veggie sticks and sandwiches.  I’ll be keeping my hands clean… and a bottle of hand sanitizer in my purse, just in case.

Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

The doctor-medication-insurance run-around

January 18, 2013

I have been trying to refill my prescription for more than 3 weeks, and now I won’t have it when I need it, by Tuesday.

I have been on this prescription for a long time, around 7 or 8 years, and it works.  It’s a hormone, and it’s not a life-saving Prescriptiondrug, but it sure does make my life better, especially for several days a month.  For various reasons, I went off of this drug twice in recent years, and each time, I had bad PMS symptoms.  The moodiness was really horrible.  Plus I didn’t get a period.  It’s obvious my body reacts better when I am on this drug.

When I started this drug, my insurance covered it with a $40 copay.  Later, it was covered with a $10 copay.  Now, it may or may not be covered.  They haven’t decided yet.

The process started a few weeks back when I called the pharmacy.  I was out of refills.  They called the doctor.  I called the doctor.  The doctor sent the refill.  Then the insurance company told the pharmacy that they needed prior authorization from the doctor.  The pharmacy then contacted the doctor’s office.  They were closed for the week of Christmas and new year’s.  It’s a small office, just the doctor and one staff member, but I was still annoyed.  Next, the administrative staff member tried to send in the authorization, but there was confusion about the insurance, so she called me.  I had forgotten to tell them about my new insurance.  Oops.  Ok, that was totally my fault.  I scanned a copy of my new insurance card and emailed it to her.  She told me she received it and would take care of everything.  More than a week went by and I didn’t hear from the pharmacy, who was supposed to call.  So I called them.  I assumed everything had gone through and they had just forgotten to send the order.  Nope.  It turns out, the paperwork from the doctor’s office didn’t go through.  They contacted the doctor’s office and the paperwork was sent.  I got a call from the pharmacy that the insurance company was processing it and that it can take up to three days.  Then today I got another call that it might not go through.  I asked how much it would cost out of pocket.  I figured I could pay $30 or $40 if I had to.  It’s $104.  Hmm, not in the budget.  I called the insurance company.  They told me to call the company that handles their prescriptions.  Those folks told me it was still being processed.  Apparently, they need the doctor to explain why he is prescribing this particular drug, instead of having me take something else.  They called his office, and were told to call back on Tuesday.

I need the new prescription by the noon dose on Tuesday.  Let’s say the doctor gets back to the insurance company on Tuesday and actually satisfies their questions.  Let’s say the insurance processes things quickly and sends approval to the pharmacy on Wednesday.  The pharmacy is quick, and could probably send it out on Thursday.  That means I could receive it by UPS on Friday.  3 days too late.  And that’s if they move quickly.  That’s if they even approve it at all.  I won’t take a different drug, not with the kinds of side affects I’ve had in the past.  But then, what choice will I have?

So it looks like 1 month wasn’t enough time to refill this prescription.  And I found the flaw in my supposedly-great health insurance.  It could be a rough month.  As the time approaches, I’ll have to warn my friends about my likely upcoming moodiness.  And that will be around the time I expect to hear about the disability insurance appeal, so I’ll be on edge anyway.

There are many, many ways that the system lets us down, that it seems to put the needs of the patients last, that it makes an already bad situation even worse.  This is just the one I’m dealing with today.  By tomorrow, I’m sure I’ll be dealing with another.

4 Comments | Educating, Expectations, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

Fun in the sun or sleeplessness and pain?

January 14, 2013

While Australia is battling wildfires and California is dealing with frost, here in New England we’re dealing with our own weather oddity: warmth.  Last week it was in the 30s.  Later this week it should be in the 30s.  Yesterday and today were in the 50s.  And it was sunny.  Go figure.

Aside from all of the concern over climate change, I have another worry: my body doesn’t like severe climate changes.  It especially does not like sudden temperature increases.  And it really doesn’t like more than one day of said increases.

I woke up feeling very hot.  I always sleep better in a cool room, and since it was so warm, I’d gone to sleep with both windows Boston sunshine
wide open and a fan on, but I was still hot.  I looked at the clock: 4:44am.  Yeah, it really said that.  I was not amused.  I got up to turn up the fan and check that the radiator wasn’t running.  While I was up, I got water.  Then back to bed.  No sleep.  I tried reading for a while.  Lights off.  No sleep.  At 5:37 I finally had a good idea.  Just a couple days ago I was cleaning up my living room and feeling frustrated that there was no good place for the box fan that was in a corner of the room.  I stumbled to the living room, noticing the pain in my foot.  Huh, that wasn’t there when I got water, was it?  I haven’t felt that specific type of pain for a while, probably close to a year.  I got the fan, set it in the far window, and went back to bed.  No sleep.  After a while, I switched the fan to the closer window.  Somewhere around 6:15 I finally fell asleep.

It was a miserable hour and a half.  My mind wasn’t racing.  There was nothing mental or emotional to keep me awake.  I just wasn’t responding well to the temperature.  I noticed pain during that time.  A lot of pain.  But that wasn’t keeping me awake either.  I was too tired.  I’m just glad I was able to sleep eventually, and that I didn’t have to get up early.  It wasn’t as much sleep as I usually get, but it was enough to get through the day.

Too bad the first thing I noticed when I got out of bed this morning (at the more appropriate time of 10:30am) was the pain in my foot.  Then later I noticed the pain in my wrist.  And other areas weren’t feeling too good either.  And I was HOT.  I opened all of the windows in my apartment and that helped.  I wore a t-shirt (in January!)  I wore my cooling neck band and that helped more.  But it wasn’t until the temperature began to drop this afternoon that I started to feel better.

Things are continuing to improve, but I’m still dealing with a lot of extra pain.  I’m at Mother Nature’s mercy, and so far, it’s costing me.

So while everyone else is loving this weather, getting outside without heavy coats, throwing balls and frisbees, taking long walks, and getting some sun, I’m counting down the hours until the cooler weather returns, with the glorious 30-something degree days and even colder nights.  For someone who dislikes winter, I’m really anxious for it to return!

Leave a Comment » | Expectations, Frustration, Isolation, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why would anyone want to date me?

January 13, 2013

I wasn’t going to write this post because it is too painful, but then I remembered that it’s because this is so painful that it needs to be written.  It’s the tough stuff that we don’t talk about, that we try to ignore, that we bury deep down, which we most need to talk about.

Today I was listening to someone talk about her cousin and how he has a new girlfriend.  The other person was surprised.  “Good luck to her!”  “Why would anyone want to date him, with all of his [health] problems?”  I quickly changed the subject.  I don’t think they knew how I heard their comments, how I related them to me and to my situation.

Before I go further, I should be honest and say that my health issues are just one reason I don’t open up to people dating-wise.  I also have trust issues.  I know this, I just haven’t figured out how to move past it.  I have been in love twice.  The first time, we were together 2 years when he told me he didn’t love me anymore.  The second time, we were together almost 3 years, had rented an apartment together, had bought furniture together, had shopped for engagement rings, and had discussed how many kids we wanted to have, when he walked out.  So even if someone says they love me, how can I believe they mean it and will stick around?  So yeah, there’s that.

Now, when it comes to the health stuff, I often find myself wondering why anyone would want to date me once they know about it.  The big relationships I had were before I was so sick.  I believe a relationship may be possible now, but how can I get to that point?  After all, there are plenty of not-so-sick people out there who they could be dating.  And yes, I know I have plenty of great qualities to offer.  And I’m not just saying that, I really do know that I have some terrific qualities.  The problem is, my dates won’t know that!  It takes some time to get to know someone, and in the meantime, while they’re still learning about my odd sense of humor and my desire to help everyone I know, they’ve already seen my limp, observed my odd eating, noticed that I don’t do many fun activities like hiking or skiing, and been cancelled on twice.  I am a pretty fantastic person in so many ways, but I don’t expect anyone to learn that until, or unless, they’re willing to look past all of the health crap.

I see other CI folks with spouses and I wonder how they do it.  Obviously some of them met before the CIs set in, but some of them didn’t.  Some of them met and fell in love knowing full well what they were getting in to.  I suppose I could meet someone like that.  I just can’t imagine how it could possibly happen.  And if I do meet someone that’s willing to look past the health crap and see me for me?  I guess that’s someone worth holding on to.

And maybe that will be a person worth trusting.

How do you handle dating?  I’m on a dating hiatus while I focus on health treatments, but I hope to be dating again within the year.  How do you get past the fear?

14 Comments | Educating, Expectations, Frustration, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

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