An Important Reminder

I have been at the computer all day yesterday and all morning working on ways to solve or at least alleviate this major financial crisis in which we find ourselves.  Every idea I come up with turns out to take four times longer than I expect.  After working so hard for all that time, all I have managed to do is:

1)  Reduce the APR of one of the three credit cards (29% to 12% for the next year!)

2)  Complete the on-line application for state assistance

3)  Gather almost all of the paperwork I will need to submit to the county office to verify the information I submitted in the application

I got the dreaded phone call around 11:00; the school nurse called to let me know the Princess wouldn't stop coughing.  Yay.  I took her right to the doctor where she was given a breathing treatment in addition to a serious talking to about not allowing the cat in her bedroom - ever.  Woo hoo.  Tonight should be fun.  But you and Daddy get to share a room and Twin A and Twin B get to share a room and now I don't get to share a room with ANYone!!!!  This should be an easy bedtime.

When I got home from the doctor's office, I checked in with my friends' on Facebook.  The first thing I saw was the sign I put up top.  Things are pretty overwhelming right now, what with the lots of bills to pay and the not a lot of income to pay it with plus needing to take Twin A to the cardiac specialist tomorrow morning.  I think I needed to remember that even though it doesn't feel like it now, everything is happening the way it is meant to happen.  I need to take a breath, let it out, and remind myself that this too shall pass.

Sigh.

STRESS

Stress is:

• Trying to figure out how to pay for this month's expenses when it is apparent there will not be enough money to cover it all
• Waiting until Friday to get Twin A seen by a specialist for his newly diagnosed cardiac problem when the doctors all stressed that he should be seen ASAP
• Knowing that Twin A will probably require a cardiac ablation, which sounds really scary
• Realizing that Twin B, whose EKG did not pick up any problems, might also have the same cardiac issue that his twin does - and we started him on the stimulant medication to treat his ADD, the same stimulant medication that Twin A's doctor stressed that we absolutely should NOT put him back on due to this condition
• Receiving confirmation from my doctor that I have been having Premature Ventricular Contractions (meaning that I keep getting an extra really forceful heartbeat every once in a while) and the medication for it may cause fatigue - not good for someone who already suffers from constant fatigue due to Narcolepsy
• Still not being able to figure out the best treatment for my Narcolepsy, but knowing that I have to try taking Xyrem once again to help me get more restorative sleep each night, even though it keeps causing severe headaches that should get better after a week - hopefully
• Slowly, oh so slowly, recovering from pneumonia
• Listening to my refrigerator as it goes through its death throes
• Knowing that I need to complete a number of on-line courses in order to make my teaching certification active again but not being able to make completing those courses a priority due to my own health, the boys' health, and our finances
• Needing to get the house back on track after being out of it for so long from the pneumonia, but the recovery from that pneumonia taking so long that I'm not able to do too much on the house each day
• Arguing with DH that opening a fourth credit card because the other three are maxed out is NOT the solution, but also not being able to propose an alternative to cover my unexpected hospital expenses, the cost of his tuition that won't be reimbursed since he is working without a contract, and the upcoming expenses we will be incurring with Twin A's (and possibly Twin B's) potential procedure
• Seeing no other alternative but to apply for state assistance to hopefully qualify for help, and hoping against hope that we actually qualify for free school lunches and food stamps
• Beginning to fill out the on-line forms to apply for that assistance and realizing it is going to take a lot of time to finish them

I don't have any cute clip-art to insert here, and am too stressed to include any links.
I'm usually an extremely optimistic person, trying to look at the positive side of things.  I'm sure there is a positive side to all of this, but I can't find it right now.  I am going to bed and hopefully will be able to see things better in the morning.

May You Live in Interesting Times

I would really like to have a boring month.  Maybe two.  I have had enough of interesting.  Really.  If life gets any more interesting I think my head might just explode.

As I mentioned in one of my last posts, I'm recovering from pneumonia.  It was bad enough that I had to be hospitalized.  The recovery is taking FOREVER, but at least I am improving and at least I have been out of the hospital for a full week now.

While I was at home recovering, DH took Twin B to the Developmental Pediatrician for an appointment to look into starting him on medication to treat his ADD.  At the appointment, Twin B mentioned that his heart sometimes feels like it is racing.  DH told the doctor that Twin A has also mentioned that his heart feels this way too.  DH also pointed out that I had been wearing a heart monitor for the last three weeks.  The doctor decided based on all this information that both twins should get an EKG before we started Twin B on stimulant medication.  And even though Twin A, though he has not been on any meds for the last two weeks because we were trying to figure out a new one for him, had been on meds for the last year, she figured we should go ahead and get an EKG for him too.

So Friday morning my dad helped me take the boys to a nearby facility to get their EKGs.  It was the most activity I had since before I got sick, and knowing that Twin A often freezes up/melts down at the sight of various Halloween decorations and during various medical procedures and tests, I thought it would be helpful to have another adult with me.  The EKGs themself went well.  Twin B volunteered to go first so Twin A could see that it didn't hurt (aaawwwww!) and Twin A got to watch the tech work the laptop that was recording all the information (and teach the tech more efficient ways to maneuver through the software using the function keys), so Twin A's turn was relatively uneventful, too.

Afterwards we drove the boys to school, my dad dropped me off at home, and I settled onto the couch with my laptop and a mountain of paperwork to do some work.  About two hours after I got back home, the Developmental Pediatrican (DP) called:

DP: I just finished talking with the cardiologist who reviewed the boys' EKG's.  Twin A apparently has a heart condition known as ......

At this point, while I know she continued talking and I heard actual words, the sound washed over me almost as if I was in a Charlie Brown cartoon and the teacher was talking.

Me: Um, okay, hang on, let me get a notebook so I can write this down.

And because it helps me process information, I wrote down Wolff-Parkinson-White Syndrome and immediately began researching it on the internet as the telephone conversation continued.

DP: After speaking with the cardiologist, he feels that we should get Twin A seen by the pediatric cardiologist who specializes in electrophysiology as soon as possible.

Whoa.  Red flags began waving all over inside my mind as the phrase "as soon as possible."  And then there's that word "electrophysiology" which sounded so strange it was almost as if she just made up that word.  Then I researched what "electrophysiology" was in relationship to cardiology and discovered this doctor specializes cardiac catheterization.  That's right, this doctor was talking about the need to get my baby seen by this specialist as soon as possible.

I have always been very calm during medical crises.  I learn what I need to know, do what I need to do, and most importantly, remain calm and collected to help everyone around me stay calm.  But if I am going to be completely honest, this whole situation has caused my own heart to beat a little faster.

As luck would have it (because who said life was going to be easy) this doctor AND his nurse (the person who is in charge of all his scheduling) were in a class all day long on Friday at another facility.  Despite both the DP emailing the nurse and me calling and leaving a message on her voice mail, I will have to wait until Monday to schedule an appointment for Twin A.  We will have to get him squeezed in some time this week, from the sound of it, and the next step will probably be a cardiac ablation, which sounds really scary but hopefully will come with lots of sedation for Twin A, DH, and me.

So now we are in a holding pattern until Monday.  DH and I are trying to stay calm.  I am attempting to look at the positive side of things:

• This could have gone undetected until there was a problem.
• Twin A had been on meds for a while now, which could have ultimately been really, really bad.
• Ummmm...I'm out of work, which allows me to accept the first available appointment the specialist has.  It also allows me to drive out to the hospital on Monday to work with the nurse on scheduling if she decides that he won't be able to be seen until January.

Okay, that's all I can think of right now.

I am really looking for a possible do-over to this year.  And am hoping that the new year will be really, really boring.

Tonight's The Night

Now I've got that song* stuck in my head, battling with the Beatles' music being piped in through the overhead speakers at the Starbucks where I sit and type on my laptop. 

As my previous posts have demonstrated, I am unable to sit at home and type on my laptop because the fatigue will quickly overtake me, convincing me of the absolute and unquestioning necessity to put my head down on the closest semi-soft surface in order to shut my eyes for "just a few minutes" which will soon become anywhere between three to six hours.  At least if I'm typing somewhere that is in public I will not attempt to take a nap.  In theory.

Tonight is the night that I try the big meds, the heavy duty sleep drugs that are too special to simply buy at my local Rite Aid but must be mailed via Fed Ex and require me to read important directions and instructions AND talk with a special nurse before I even attempt to use.  I tried it for about a week once before and it worked really well.  And then the Princess came to me in the middle of the night with a bad dream and I could barely wake up to help her.  I remember feeling like I was swimming through corn syrup to rise up to the surface in order to actually talk to her.  I decided then and there that I could NOT take any other medication like that until the kids were older.

And then I found myself out of work, home alone while everyone else in the family went to school.  And despite large to-do lists, I found myself sleeping for more hours than I was awake.  And even when I'm awake I feel like I could fall back asleep given half a chance.  I can't keep going on like this.  My doctor was willing to double the amount of daytime meds I take to see if that would help me stay awake and alert, but even that was not enough.  I don't see I really have a choice.  DH agreed to be the go-to night-time parent (if necessary) so tonight I begin the meds again.

Tonight, after I mix up enough meds for two doses and am completely ready to fall asleep, I will take the first dose.  Two hours later my alarm clock will wake me up enough for me to take the second dose. 

I know, it sounds crazy, but remembering the goal is to get me to fall asleep and get into a deep, deep sleep, apparently this is what does the trick. 
  

But that is not all.  ("Oh, no, that is not all."  Anyone else get that Cat in the Hat reference?  Anyone?  Anyone?  Bueller?  Bueller?)

Tonight I will also hook up my brand new fancy-schmancy heart monitor that I will then wear for the next three weeks.  I have to wait until a little before 8:00 to hook it all up since that is when the person from the monitor company is going to call me and ensure that I hooked it up correctly and turn it on (it's wireless) and test it out.  We are trying to get to the bottom of this whole extra heart beat thingy I seem to be having more and more often.  The echocardiogram was clear, so we're pretty confident it's not something medically scary, but we still need to figure out the cause.

So tonight is a big night.  I'm actually kind of excited to be moving forward on both of these issues, excited to see if the new drugs help me actually feel like I slept all night when I wake up in the morning, excited to see if the new heart monitor actually ends up recording what feels like an extra, sudden, forceful, out-of-the-blue heart beat that actually makes me simultaneously jump and gasp in surprise each and every time it happens. 

It's a big night.



* So the song I had in mind I thought was called "Tonight's the Night" but I couldn't reallly remember much more than that phrase.  I tried googling it to jog my memory of some more of the lyrics.  Do you have any IDEA how many songs have this phrase in it?!!  It took half-way through this post before I remembered that the chorus was kind of more like "Tonight, tonight, tonight, wo-oh, gonna make it right, tonight, tonight, tonight...." so I searched those lyrics only to finally discover the actual song.  I feel much better to figure out the actual song that will now be stuck in my head for the rest of the day.