"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

Tuesday, January 25, 2011

It only took a week...

...to sort out the insurance issue.  I spent so much time in the last week on the phone with Big Insurance Company, my doctor's office, and the infusion company.  I swear sometimes it is like another part-time job, just keeping on top of people and making sure they actually do their jobs.  Anyway, I get my next infusion Thursday evening.  The IVIG was delivered today.  I almost hugged the delivery guy from the infusion company. 

I am sick, too.  (I'd love to go to the offices of BIC and cough all over a whole bunch of people there right now!)  I came home from work early today.  I must have looked as good as I felt, because I had more than one coworker telling me that I should go home.  However, as I said to one, when she asked me why I was staying until after a couple of my classes were done, "If I go home any earlier, I have to take a whole sick day.  I am up, dressed, and have makeup on.  I am not being docked a full sick day."  I don't think I'm going to make it in tomorrow.  *sighs*  I think I'm going to the doctor in the morning.

In other news, my husband told me that he has to be out the door at 6:15am tomorrow for a big meeting about two hours south of us.  Which means that, even if I call in sick, I still have to make myself look vaguely presentable, because I need to bring my son to daycare/preschool.  Obviously I understand that hubby did not do this on purpose.  My timing, as always, is just spectacular. 

Tuesday, January 18, 2011

...And I have "excellent" insurance?

So, the IVIG I get every four weeks costs, according to the statement from my insurance company I got recently, just over $10,000 a month.  As I blogged a couple of weeks ago, I started getting it nearly four years ago, after I nearly died from a very serious infection.  I have a feeling that Dr D completely bitched out my insurance company for their previous refusals to pay for it (they basically said I wasn't sick enough to need it) and told them I was thinking of suing.  Dr D, like many doctors these days, might actually hate insurance companies more than the patients do. 

I received an EOB regarding my September infusion...in early December.  It said Big Insurance Company was not paying for it.  Huh?  I got one of these once before, and it turned out to be nothing, so I forgot about it.  Then I got one a week later regarding my October infusion.  Three days after that, another one, for the November infusion.  Okay, now I'm a little freaked.  I called Dr D's office.  F, the nurse who also handles all insurance-related things for my case, thought this was rather odd, and she called Big Insurance Company.  BIC told her that they couldn't authorize the IVIG, because I hadn't had any recent blood work.

I had bloodwork on August 30th.  The September infusion was about ten days after that. 

Basically, it boils down to this: they randomply decided they want me to have bloodwork more often from now on.  Of course, I only figured this out after calls from me and F to BIC.  They never bothered to tell me, or my doctor who oversees the infusions, that they want me to have bloodwork more often, when up until this point, they've only wanted it four times a year! 

So, the day before my December infusion, I went for bloodwork.  Problem solved, right?

My life should be so easy.

My next infusion is scheduled for tomorrow, which means the IVIG should have been delivered to me today.  It comes in an IV bag, in a cooler.  As soon as I get it, I have to put it in the fridge.  The infusion company, who sends me the supplies and hires the nurse to come and hook me up to the IV and everything, called me this morning.  They did not have an authorization from BIC for my infusion this month.  I had, and F had, been trying to get a straight answer as to exactly how often BIC wanted me to go for bloodwork- every month?  Every other month?  No one seemed to know. 

I got off the phone with the infusion company, and called BIC.  I spent about 45 minutes altogether on the phone with them, about half of that time on hold.  They eventually told me they had nothign from Dr D regarding medical neccessity for the IVIG.  I sighed, hung up, and called Dr D.  When I told F what happened, she burst out, "They're lying!"  I told her I had assumed that, since this is an insurance company, after all, and my dealings with insurance companies have NEVER been good, or easy.  F and I hung up, with her promising to call BIC right away and smack them around a bit.

A couple of hours later, she called me back.  All the paperwork should be in order by the end of today, or tomorrow at the latest, and then the infusion company would call me to set up delivery.  Oh, and BIC wants blood from me every month from now on.  I texted my nurse to let her know there's an excellent chance we'll have to postpone this month's infusion a few days. 

Why is BIC suddenly so gung-ho to get blood from me each month?  Well, the bloodwork is to check on levels of various proteins in my blood, most notably, IgG.  Essentially, they are hoping the bloodwork will show I am all better, so they won't have to pay $10,000 a month anymore.  I should be so lucky, right?  After nearly 39 years, a spontaneous cure. 

I go through agita like this with my insurance company a few times a year over various things.  My son needs occupational therapy, and was getting it (and getting it paid for) for two years, but insurance quite suddenly decided they weren't paying for it anymore.  They give me crap about various medications I take to, you know, keep me breathing.  They randomly decide that I should get generics when my doctor didn't prescribe the generic.  And I have what is considered to be in this country excellent insurance- I work for a public school system in the state of New Jersey, and therefore have state worker health benefits.  My insurance is widely considered to be one of the best in the state.  I'm sure it is very good if you're someone who's, you know, healthy, and only needs to go to the doctor for a strep throat once or twice a year, and never have to take any medication aside from an occasional Advil for headache.  But for people with chronic illnesses, insurance is a nightmare, even if you have "the best". 

I don't know all the ins and outs of the health care reform act.  However, I do know this: our system is broken, badly, and needs fixing, now.  Maybe if we had a health care system like the UK has, and the government paid all health costs, I would not have gone so many years without IVIG, and would not have nearly died not even six months after bearing my son. 

Wednesday, January 12, 2011

I wonder, sometimes...

...what it's like to be healthy.  My health limits me in little ways people wouldn't think.

For example: We are going to Disney World later this year.  Originally, instead of summer, we discussed going during one of my school breaks.  I vetoed the February break week immediately, with the words, "I'm usually recovering from somethign that week.  I don't want to spend my vacation sick."

I don't shake hands with people in church (I'm Episcopalian) during the winter at all.  I tell people I have a cold and would rather not, because I don't want to give it to them.  (Thank you, H1N1; people are a LOT more accepting of this ow than they used to be!)  In reality, though, I don't shake hands because I am afraid someone will give ME something.  This is the same reason I "dip" the Eucharist and don't drink from the Cup. 

I have to plan my schedule around my medication schedule.  Any medication works best when it's taken at or around the same time every day.  This means every 12 hours, I have to use my Symbicort inhaler.  Every night around 7pm, I have to take a few other pills.  Every morning as soon as I wake up, I need to take Nexxium.  And so it goes.  And, yes, I do notice when I forget or am late to take my meds for whatever reason.  When I go out in the evenings, this also produces a dilemma: do I take everything before I leave, and be able to breathe, but take the chance that the various meds will make me too drowsy to safely drive home, or do I wait until I get home, and hope that I don't have a coughing fit or asthma attack while out? 

Most of the time, I'm of the opinion that my situation, having been sick my whole life, is much easier than for someone who was healthy and now has health problems.  I don't know what I never had, so how could I really miss it?  But sometimes, like tonight, when I'm feeling melancholy, I wish that I could experience just for one day how it feels to not have to take any medications, or remember my inhaler, or hear someone sneeze or cough and not immediately worry that I can feel the little disease-filled droplets making their way into my system.

Thursday, January 6, 2011

Coughs always linger for me...

...and when they do, I sound like I belong in a TB ward.

I'm used to my coughing.  My husband is used to my coughing.  My son is used to my coughing.  My whole extended family and my husband's family, they're all used to my coughing.  Outside of those folks, though, people give me The Look.  You know, that look.  The one that very clearly says, as they inch away from me while trying to not look like they're inching away from me, "Wow, she's got flu or something.  I better get the hell away from her!" 

I had this happen to me today, at the library of all places.  I was on one of the computers, looking up a book I wanted to read, and there was a woman not much older than I am at the next computer.  I was coughing, because, you know, I'm just getting over a cold, and I do that.  It was pretty loud, and the woman at the computer next to me sighed noisily and muttered, "That's it.  I'm outta here."  And she flounced off.

Now, I don't know for sure she left because of me.  I didn't even really notice her until she did that, beyond the vague awareness that there was a human next to me.  But this sort of thing has happened to me, pretty much on a weekly basis, since I was very young.  My aunt told my little cousin he had to hold his nose and cover his mouth around me because I might "give him something".  I eventually forgave him, since he was only seven or so.  I have never forgiven my aunt, who was an adult and should have known better, especially since my mother had explained to her what my deal was.  I was bullied from kindergarten all the way through 12th grade on this issue, in addition to other things.  And no matter how many times I experience it, it still hurts.

Not much better are the comments: "You sound terrible!  You should see a doctor about that!"  No, really?  I like to cough like this and constantly draw attention to myself, thanks. 

Wednesday, January 5, 2011


The boy (and I) did fine.  He was quite annoyed to find out he couldn't have his usual juice, or even water, this morning as soon as he got up, and was a bit whiney about that.  But otherwise he was in an okay mood- he watched a couple of shows and played while my husband and I got ready.  We were driving in seperate cars because D had to go to work as soon as the boy was discharged. 

Things went very smoothly.  A couple of the nurses remembered him from our tour the other day and greeted him by name, which was VERY nice- I could see by how he held his shoulders that the fact that these people knew him relaxed him a bit.  He had four of his stuffed animals (his "buddies") with him, and showed them off to everyone.  He also informed more than one nurse that Chick, his, well, baby chicken, was very nervous about today and did NOT want to breathe in the "sleepy air".  That was the biggest thing from the tour that bothered him.  He screams bloody murder on the rare occasions we have to use a nebulizer with him, so I'm not overly shocked by this. 

We got him out of his shirt and into the hospital shirt without incident, and I robed up as well, over my street clothes, since I was going into the OR with him.  When it was time, he picked up his buddies and began walking with the nurse, while I followed behind them, talking to Dr G.  Little Man was so involved in his conversation, he forgot he'd asked me to carry him into the OR, and walked himself.  When we got to the room, I said, "Oh, look!  It looks just like the room in the Curious George book!"  No lie, it really did. 

That's when he started to fall apart.  Still clinging to his buddies, he shrank back against me.  "I don't want to lie on the table!"  I tried to get him up there, but, even though he's only four, he's quite strong, and I couldn't.  We ended up with him on my lap, me holding him, Dr G holding his head, and a nurse holding his legs so he couldn't kick us while the anesthesiologist held the mask to Little Man's face.  His blood-curdling screams eventually faded to moans, then whimpers, and then trailed off, while his eyes rolled up towards the back of his head...and didn't close, which freaked me out.  We laid him down on the table.  "He's still moaning.  His eyes are open," I said. 

"Yes, that's okay.  It's normal," the anesthesiologist reassured me.  I gave Little Man a kiss, and Dr G gently escorted me out.  "You did a great job," he told me quietly.  "Just remember, all this is much harder on you than it is on him."

Fifteen minutes later, Dr G came to tell us it was done and everything was fine.  Little Man woke up quickly, ate and drank immediately, and was plenty alert and in no pain, so we were home by 10am.

I had been concerned I wasn't going to be able to go in with him, because I have a cold, and I look and sound like it, but no one said anything about me hacking up a lung and blowing my nose a lot.  I'm glad.  My husband is a great father, but there are some things I just think Mommy is supposed to do...and I'm better at than my husband is.  ;)  Apparently I do have a bit of Mommy in me, and can be a tough cookie when I have to be, which is nice to know, too.

Tuesday, January 4, 2011

My son is having surgery tomorrow.

It's ear tube surgery, and very minor, as far as surgery goes- it'll be about 20 minutes total.  We should be home by noon.  This will be his second set of tubes, too.  He had surgery before, in July 2009, but those tubes, as they're meant to, fell out at some point recently, and he subsequently had three ear infections in three months, which is the magic number they look for. 

He has inherited this tendency towards ear infections from my side of the family.  My brother and sister, neither of whom have immune issues, also got frequent ear infections as children, but neither of them ever needed tubes.  I did, at age seven, so I remember a great deal of that whole deal. 

My biggest concern about tomorrow really isn't about his physical well-being- he's had this surgery before, and come through fine, and I've had this surgery before, and obviously lived to tell the tale.  I also trust his doctor absolutely.  My concern is for his emotions- he's already quite nervous.  We just told him about the surgery over the weekend; I figured there was no point in having him worry even longer than that.  Also, he and I took a tour of the surgical center yesterday where he'll be having the surgery. 

Looking back on my childhood, with all my medical woes, I don't remember my father being there for much.  I do, however, remember my mother.  My mother has always been a force of nature, a veritable god to me.  No matter what I had to do- spend a week in hospital for various tests, surgery, multiple x-rays and blood draws- my mother was always there, firm and calm and strong.  She is the one who has never allowed me to pity myself, or limit myself because of my health.  She raised me as she would have any kid, and never treated me as sick.  I only hope that I can be as strong for my son, not only tomorrow, but all his life, as she has always been for me.

Sunday, January 2, 2011

How I spend my days

I am a sign language interpreter.  I work full-time in a school district.  Most of my time there, I have worked in the high school; this year, I work in the high school in the mornings and the middle school in the afternoons.  The district I work in is a receiving district for deaf and hard of hearing kids from all over the northern third of New Jersey.

I go into "regular" classes with the deaf kids, and anything the teachers or hearing kids say, I sign, and anything the deaf kids sign, I voice for them.  I'm not their teacher, and do not grade them.  I can and will advise teachers as to whether something they expect is, for example, typical for a deaf student, though.  One example is a class I am interpreting this year.  The teacher gave a test, and part of the test involved short-answer questions.  The teacher showed me the responses from a couple of the deaf kids, to find out if they made sense to me.  (One student essentially wrote in American Sign Language order and grammar, but the answer was the correct answer, so she gave credit for that.) 

I have a degree in Education of the Deaf, and a degree in Interpreting for the Deaf.  Yes, interpreting is a real job that one needs to train for.  Anyone who knows some sign language cannot just go out and start interpreting.

I like working in the schools- the kids have a way of keeping me young, which is good because I have a tendency to take life far too seriously.  Working in schools, however, really wasn't the most intelligent career choice I could have made, what with all my health issues.  Schools, as we all know, are veritable petri dishes, filled with germs, and kids who don't wash their hands or cover their sneezes.  I've had more than one occasion when a kid coughed or sneezed near or on me, and all I could think was, "Damn, that's going to suck in about four days." 

The benefit of working in a school, if one has health issues?  The fact that I only have to show up for work 180 days a year, and I get ten sick days on top of that.  Also, the whole getting out at 3pm thing- if I feel like I'm sick, I can call my doctor and get an appointment that day for 3:30pm or so, and have time afterwards to go to the pharmacy and get whatever scrip he's given me, before I have to go pick up my son at daycare...and never miss a moment of school. 

Oh, and the health insurance is pretty good, too.  Even if they do give me a hard time about...well, pretty much everything. 

Saturday, January 1, 2011

March 2007 is always with me

In some ways, that terrible time when I was so ill, still suffering from not-properly treated Post Partum Depression, and trying to figure out motherhood, will never ever leave me. 

One of the things I have always had to deal with to a certain extent is odd little pains now and again.  I get a charley horse in a muscle on my ribcage occasionally; I am sure I look really interesting as I try to stretch that one out!  My lungs will hurt sometimes, if I am really sick, or if I am having an asthma attack.  When I'm really sick, and coughing a lot, I pull various muscles in my chest; I have even cracked ribs from coughing.  (How do I know I cracked a rib and didn't just pull a muscle again?  Trust me, I know.  I felt it crack.)  That was is superfun, because it takes six to eight weeks for it to fully heal.  You can't wrap a rib and immobilize it, as you would most other bones.  The ribs move with every breath you take. 

A couple of hours ago, I had a pain in my back, on the right, and difficulty drawing a deep breath as a result.  I immediately began to panic- is it another empyema?  I do feel like I am coming down with yet another cold, but it's not full-on yet.  I used my rescue inhaler, to see if it would help.  Sure enough, by about ten minutes after that, I was fine. 

Moments like this, and the four scars from chest-tube surgery (that still itch sometimes- what's up with that?), remind me all too well that I am not and never will be normal.