"It is health that is real wealth and not pieces of gold and silver."

"It is health that is real wealth and not pieces of gold and silver."

~Mohandas K Gandhi

Wednesday, August 31, 2011

Disney World!

Well, we're back.  Overall it was a good trip, except for a little thing named Irene that came screaming up the coast.  We were originally scheduled to fly home into Newark Airport Sunday August 28th.  On Thursday the 25th, we decided to stay until Monday.  We extended our stay in our hotel room (Thank you, Animal Kingdom Lodge, for being so flexible!) and changed our flight reservation to Monday 8am. 

Then, Saturday afternoon, my husband got an email from JetBlue- flights into Newark were cancelled Monday as well.  After working the phones and the Internet for over an hour, he and I came to a most sucky conclusion: Planes were not flying.  Trains were not running.  We had only one choice- to rent a car and drive 20 hours home.  So, we left Sunday shortly after noon.  We got as far as my cousin's house in Charlotte, NC, crashed there, and got back on the road Monday morning before 8am.  We pulled into our driveway close to 7pm Monday night.

So, the FastPass: It actually isn't technically a FastPass.  It's a pass to get some accomodations, like, in my case, waiting inside, in air conditioning, instead of in the stifling heat.  A bit disappointing, because I guess I misunderstood what my doctor was telling me, but it was still nice to have, just in case.  We ended up not using it at all.  The lines, overall, were not terrible, and the rides that had really bad lines, we got the more traditional Fast Pass for. 

My throat is very hoarse right now.  I'm not sure if it's from allergens or from zipping in and out of AC.  It's not from illness, though- I can tell.  I'll just have to live with the hoarseness until my throat decides to clear up.  Frustrating and annoying, to be sure.  Otherwise, we all came through our vacation unscathed.

Tuesday, August 16, 2011

IVIG brain

I had IVIG today.  I usually have IVIG brain fuzziness for about 12 hours afterwards, so if I make a lot of grammatical mistakes or spelling errors in this post, my apologies.
It's not like being high or anything.  Parents of newborns (or children who were once newborns) will be able to relate- it's like the brain fuzziness you get from that fatigue, except minus the bone-crunching fatigue.  There is some fatigue that does go with it, though.

It's kind of interesting when I have to work immediately after, or the next morning when I have it in the evening- for the first few hours of work in the morning, I feel a bit out of things. 

When I have to care for my son immediately after, or drive somewhere, or bring him to Occupational Therapy (OT) for his Sensory Processing Disorder (SPD), it's not so interesting.  Sometimes with the fuzziness comes irritability, and that's not a good thing to have when caring for a four-year-old who LOVES to talk, and HATES certain parts of OT.  Today, at one point during OT, he was going into a meltdown, and I was thisclose to actually leaving the room, I was so annoyed with him.  Oh, and I yelled at him in the car on the way home- that one was for talking too much.  He was very upset by that, and was positively silent the rest of the car ride home.  I apologized to him later, and explained to him what happened and why I yelled.

I don't like yelling at him.  I don't do it often, which is good, but whenever I do, and he bursts into tears immediately, I feel like a total schmuck.  I still feel like a total schmuck, and that was four hours ago. 

Just one more thing to thank my malfunctioning immune system for.

Sunday, August 14, 2011

A bit disjointed

My mom is in the hospital again, with pneumonia, again.  Mom has ALS, better known as Lou Gehrig's Disease.  It causes the nerves that serve the voluntary muscles in the body to atrophy and stop working.  Mom was diagnosed seven years ago. 

My mother is and always has been the strongest person I know.  Nothing has ever been able to slow her down- sick kid, working, serving as a volunteer on our local first aid squad, divorcing an alcoholic husband, and raising three kids virtually singlehandedly after that. 

I always say that my mother is the reason I have not let my health problems stop me.  When I was growing up, I did not know I was sick.  Everything that happened to me was treated very matter-of-factly, like it was no big deal.  I coughed a lot?  I was sick?  Whatever.  Do your homework.  Wash the dishes.  Fold the laundry.  I resented it at the time, as any red-blooded American teenager would, but her toughness made me who and what I am today. 

I have plenty of experience as a patient, but very little visiting other people in hospitals, and therefore am somewhat awkward at making small talk or helping out with things while the person is in. (Of all people, you'd think I'd be at ease with hospitals, wouldn't you?)  I either try to do too much, or back off and do almost nothing.  With my mother, I have a tendency to hover and try to do too much.  (I suspect there's a part of me that wants to pay her back for everything she did for me when I was a kid.  Even though as a mother myself, I now understand that, yeah, all that is work, but you don't expect to ever get paid back- you do it because of the love you have for the child.)

I met Mom at the ER Tuesday evening; she went via ambulance from her assisted living facility.  I stayed by her side until just after 11pm, after she was settled into her room.  I went and visited her the next day for a few hours, and the next as well, thankful for once that I work in education and have summers off.  She'll be discharged tomorrow, and my sister is bringing her home.  I may go see her later in the afternoon.  I can't go Tuesday, because I have IVIG and my son has OT. 

For those of you who also have a lot of experience as a patient- do you feel this awkward when visitng friends or family that are sick, whether in hospital or at home?

Friday, August 5, 2011

Fast Pass update

Wow, I got a lot of comments on this issue, both here and on my Facebook page.  Overwhelmingly, the comments all pretty much said, "DO IT!"

The quotes that really stood out for me follow:

"This pass is a prophylactic measure.You're not that bad off now, but you could be if you stand in the heat and humidity waiting in line."

Very true.  I have been known at certain times in the past to go within 48 hours from being healthy (for me, anyway) to at the doctor's with pneumonia.

"Your doctor proactively gave it to you and said he wanted you to use it for your health. I say use it! After all, you could 'suck it up' and brave the lines and maybe even feel okay that day, but it will chip away at your health and you'll need to recover!"

Also true.  Even if I don't end up sick, I could end up exhausted, and unable to have fun with my family the next day.

"If you're anything like me you downplay how much your health issues affect you (not that I have huge health issues, but you know...when I'm sick). You and the family will have much more fun if you can get more enjoyment into the times you're out in the humidity. And Florida humidity is no joke."

This is also true, not just of me, but I think of most American mothers now.  We have so many choices, and have been told we can have it all, and feel like we should have it all, so that we give to everyone and very seldom take rest/enjoyment purely for our own rest/enjoyment.  I know so many women, both in my personal life and my work life, who have said to me variations of, "I never use my sick days, because I need to save them in case my kids are sick."  (Inevitably, they say this while they are breathing cooties into my face, cooties which later cause me to be down for the count, but that's a whole 'nother rant entirely.)  This, I feel, is an indictment of the current system, both employment and health care.  People feel like they can't take sick days they actually are granted by their employers because it looks bad or looks weak.

I do not have the luxury of trying to save my sick days for when my son is sick.  The days I call in sick, I am either calling in dead, practically, or I am coughing so incredibly much that...come on, would you want to try and teach over that sound for 42 minutes?  Or learn, listening to that?  I didn't think so. 

Anyway, I showed the note to my husband last night when he got home from work, and told him the story about my doctor's appointment.  His first comment, right off the bat, was, "We're not using that." 

Yes, ladies and gentlemen, I married a man just like me.  ;)

I had let all you fine people convince me by that point that I am not mooching off the system if I use this pass, so I said, "Your wife has chronic, serious lung issues, your son has Sensory Processing Disorder, and your mother has mobility issues.  Why wouldn't we use this?"  He had no answer for that.

We pretty much decided if an attraction has a short wait, we won't use it, but if there's a long wait, we will. 

It's been a hard decision for me to make.  My mother raised me to be strong and independent.  It sounds strange to say, but when I was growing up, I did not know I was sick.  I didn't know I was different.  All the doctor visits, sick days, etc., felt normal because to me they were normal.  Most people in my extended family never seemed to notice how much I coughed, or how often I got sick.  I had a conversation recently with a cousin who is almost the exact same age as me, and it surprised me when she said, "I had no idea you were that bad off.  I knew you got sick a lot, but I never thought about why that was." 

Using something like this feels like it goes against who I was brought up to be.  You don't look for help from others; you help yourself.  This, obviously, is something I need to work on, for myself, because otherwise I'm going to have a really hard time in 30 years (if I am fortunate enough to make it that long) and I need others to help me with anything!

Thursday, August 4, 2011

Fast Pass?

I had a cold starting about a month or so ago.  I managed to soldier through and get rid of the cold without it becoming anything more severe- yay!  However, I am still coughing and wheezing a great deal, mostly at night.  I wake up needing to use my rescue inhaler, which is out of the norm for me.  So, today, I threw in the towel and went to my GP.  He's very familiar with my medical history, and knows that I'm a tiny bit more informed than his average patient, and therefore really listens to me.  This, I have found, is a rare commodity, especially in GPs.  They are so rushed and overbooked these days, it's hard to get them to stop and listen sometimes.

So, today, I outlined for Dr H what's been going on, ending with, "I'm honestly not sure if I have a little bronchitis, and need an antibiotic, or if I just need a week of prednisone to get the asthma sorted out."  After examining me, he agreed with what I was leaning towards- that I just need some prednisone. 

While we were discussing things, I mentioned we are going to Disney in a few weeks, and asked if he would be willing to write me out a scrip for an antibiotic to bring along, just in case.  Sure, no problem, and, "I'm going to totally make your vacation right here."  He wrote for a couple of minutes on his prescription pad; I couldn't see exactly what he was writing, but it was a lot more writing than you usually see on a prescription.  He then handed it to me.  He gave me a Medical Fast Pass!  "I don't want you having to stand out in the heat and humidity waiting for long periods, with your lungs," he said.

Basically, when I arrive at each Disney Park, I bring this paper to the Fast Pass office.  The Fast Pass enables me and my group to walk up to any ride and bypass the line.  It's not something that occured to me to ask any doctor about, because, really, when I go somewhere, if I'm tired or not feeling well, I find air conditioning, go in, and sit for a while.  But between my lungs and immune system and my son's Sensory processing Disorder, it might not be a bad thing to have, just in case.

I'm of two minds on this.  Part of me thinks, "I'm really not that bad off.  This is kind of cheating."  However, the other part of me is thinking that, with the crappy health deal Mother Nature gave me, I may as well take advantage of it once in a while when it nets me something good.

So, I don't know.  I'll bring it, certainly, and get the Fast Pass, probably.  But I doubt I'll use it for everything we do there.

What would you do?  Would you use the Medical Fast Pass?