Stupidity, and why life sucks

Today, I feel like life really sucks.  I am trying so hard to not let the stupid numbers from those stupid tests get to me, because really there is a lot of variation and things might look better next month.  But it is really hard not to be discouraged.

Then, yesterday afternoon, hubby decided to go buy me a new dress from the hippie hut, to cheer me up.  Unusual, but a nice gesture.  I appreciated it until evening when he left for a Friday practice that he doesn’t normally have, and didn’t “cancel” it despite pouring rain and thunderstorms.  Suspicions were confirmed when he came home a couple of hours later dry as dry could be.  You can’t have soccer practice in the middle of thunderstorms, does he think I’m an idiot?  I wish he wouldn’t be so blatant about it, and I have to admit to wishing a bolt of lightning would strike them both.  He must have been feeling guilty because he got up this morning and cleaned the house, including mopping, without being asked.  I went back to bed and slept until noon.  Neither of those things ever happen.

In the meantime, someone sent me to a web page titled “You are not crazy” (youarenotcrazy.com) and it made me sit back and go “hmm” because so much of it is true in my situation but I never made the connection that it would be considered emotional abuse.  I should have, I guess.  It’s not cool to tell your sick wife that she’d be attractive if only she’d lose that little belly.  Not cool to insist that I couldn’t survive without all the things he does for me, considering my disability and limitations.  Calling every hour (or more) to check up on where I’m at?  Check.  Moving me away from family and friends, isolating me?  Check.  Controlling finances, check.  The list goes on and on, but the reality is that going by that website and the numerous links it provided, this is an emotionally abusive relationship.

Still, I make excuses and I wonder if that is part of the cycle or… I think to myself, he is not that way, he’s just not that bright and he doesn’t understand blahblahblah.  I don’t hold him accountable.  And everyone else in his life LOVES him.  He’s a charmer all right.  People just like him, he’s a likeable guy.  They don’t have to live with him though.  And still, I make excuses.  I think, this disease is hard on us, hard on him, he just doesn’t know how to cope.  And it’s true, but it shouldn’t give him a free pass.

He’s talking (again) about leaving for Greece this summer, for good, and sending me money to live on so that I will still bring his boys to see him.  I hope he does.  If he doesn’t leave by the first of June, I will start working toward a way to get myself out of here.  But then I start thinking about being sick, and what if I need a lung transplant, or just another biopsy… who will take care of the kids, who will take care of the house… I really do feel stuck.

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Damn Flus and Ex-husbands

I dislike both intently right now.  All of my kids are sick, and my xh seems to think that I made them all have influenza on purpose.  We did get a positive influenza test on the 8yo, so my suspisions were correct in that regard at least.  Ex is being  a true and total asshole, and I’m just going to look over it for now because we’re all tired and dealing with sick kids and sick selves (he’s sick too, with c. difficile which I understand is no picnic) and usually we are able to get along well enough for the sake of the kids.  It does them no good for us to fight and as such I’m really going to try my damndest to be the bigger person and just let it go… let it go… I’m very zen… let it go…maybe I’ll convince myself before I have to see/talk to him again.

My 5yo can’t stop coughing, although honey has helped with that this morning so yay.  My 2yo is improving, I was very worried about him for a day or two.  And now my 8yo is really, really sick and dad (dick ex-husband) is keeping him.  He’ll be out of school all week.  13yo is handling it okay and just a little sick.  And so far, my flu shot seems to be mostly working and all I’ve had is a bit of stuffiness that passed quickly.  Yay!

However, unrelated (I think) to the flu is that I am having a very crappy breathing day today and I”m ready to divorce my current husband.  Hmm, anyone seeing a pattern here?  Maybe it’s not them, maybe it’s me!  I don’t care who it is, I am just tired.  I don’t feel good and I’ve been taking care of sick people (including the hubby) for a week now and it shows no sign of ending any time soon and really I’d just like some help.  One wouldn’t think that would be too much to ask, but alas…

Here’s hoping everyone here feels better soon, it’s so hard to see your little ones sick and not be able to fix it.  I just want to make it go away.

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I feel bad…

And with bad, I mean guilty for poking fun at poor hubby who (as it turns out) has/had the flu.  He was kind enough to pass it on to four kidlets and my house is full of sick at the moment.  Not trying to imply he passed it to any kidlets on purpose, that’s just the way it is.  Today is the first day I’ve seen him out of bed since Thurs. of last week, so four days in bed.  He hasn’t spent even one day in bed aside from the day he had surgery on his knee since I’ve known him, so there is no doubt in my mind that he must have been near death.  Also, he wouldn’t cancel practices or games even when I was in ICU almost on a ventilator with tubes in my chest, nor when he was puking on the field – he cancelled games all weekend, and practice today.  It’s bad.

So, now that he’s pretty much out of the woods the kids are all sick.  It’s hitting the little one (2yo) pretty hard.  I have to assume it’s flu because it’s the only thing that makes the least little bit of sense as to why I’m not sick too (since I had my flu shot).  It’s really hard seeing all the little ones feeling so bad, especially baby Homer, and I hope they’ll all recover okay.  I took them to Urgent Care as soon as they got fevers with the hope that tamiflu (and a positive influenza test) might lessen the severity of their illness, but since we’re on medicaid and it was Saturday there was no one to pre-authorize the dispension of expensive antivirals and as it turns out you can’t get tamiflu on medicaid without a pre-authorization even with a positive influenza test… so yeah, I guess if you get sick on a weekend with medicaid you’re out of luck so no tamiflu for my kids.

On the bright side, I have read that the antivirals are really not so effective against this year’s flu strains so might not have done any good even if we had gotten them, and the side effects can be yucky so… Still, it angers me to know that there was something that could have helped my babies feel better but we’re not entitled to it because their mom is disabled.

Well, that’s it from the sick house, here’s hoping everyone is feeling better soon.

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Busy Times

The holidays have taken the air out of my sails.  Not that I had any air to begin with…

At any rate, I haven’t been able to update much as I’ve had one or more kidlet attached 24/7 for the past several weeks.  Thank goodness for back to school time.  Now I only have two here and it seems very quiet indeedy.  The break has been very rough, and has really amplified just how crappy I feel and how tough it is to get through even normal stuff with this stupid disease and the limits that have to be placed.  Not to mention the consequences when the limits aren’t there, as I do tend to go overboard for the kids and ignore my uncomfortableness as long as possible, and that really is NOT a good strategy these days.

Tomorrow is my appointment with B.U.D. (Big University Doctor) and as usual I am a crazy, nervous mess.  I have a strong suspicion that I am not getting better and in fact am steadily declining in lung function.  As a result, I’m guessing that he will push for the repeat of the open lung biopsy, which I really (really) do NOT want to do.  That was seriously no fun, 21 days in the hospital (several of which were in ICU) and I still have residual pain from that procedure a year and a half later.  Not something I want to do again, ever.  Not to mention the little factoid that it doesn’t change my treatment plan at all, because what he suspects I have there (still) is no treatment for.  In fact, the only treatment option is a trip to Mexico to pick up drugs that are not approved yet by the FDA (this is a very real possibility that I will explore after tomorrow if needed) or to get listed on the lung transplant list.

Now, I’m not saying that lung transplants are a bad thing and I am of course thankful and amazed that they exist at all.  Still, the survival rates for lung transplant recipients are not that great, and it certainly isn’t something to be taken lightly.  I guess I would sign up for it as a very last resort and after I felt like all other options had been exhausted.  And I’m not quite there yet.

I have a lot to say, having been MIA for the past couple of weeks, and I have updates on my mysterious cousin, but this is going to have to suffice for now.  I’ll update tomorrow evening or Wed. morning after seeing BUD and let you know if a trip to Mexico is in my near future or not.  Hope everyone had a Happy New Year!

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Sick again, what’s new?

I know you get tired of reading it, I get tired of typing it!  I’ve been sick again!  Oh the shock!  I know!  

I was in the hospital from Sunday until late yesterday (Tuesday?  I’ve lost track of my days!)  I woke up Sunday morning with horrible nausea, vomiting, and diarrhea (ugh) and it just wouldn’t stop.  I wound up getting so dehydrated I nearly passed out, was wishing for death I felt so horrible, and had my daughter call the squad for me.  They admitted me for massive dehydration, and it took a couple of days before I could keep anything down.  I hope to never, ever repeat that experience.

This was my first hospitalization in over a year, and I didn’t miss it one bit.  I was going stir crazy by yesterday afternoon waiting for my doc to show up and discharge me.  I have no doubt that there will be hospitalizations in my future, but I really, really hate the whole experience.  On the bright side, since I’m on the immunosuppressants I have to have a private room so there’s none of that roommate business.  Of course, were I not on the immunosuppressants this whole inpatient stay likely could have been avoided.  The rest of my family caught it too, but it consisted of a few bouts of diarrhea and a day of taking it easy for everyone else.  NOT FAIR!  Although I wish to have it as easy as they had it, not the other way around!  I wouldn’t wish that experience on my worst enemy (not that I have one but if I did…) let alone my family.

So, that’s where I’ve been and why I’ve been MIA.  Of course, it is my theory that this is all part of the Army conspiracy to shut me up because I’ve been blabbering about my cousin’s death all over the internet.  I haven’t spoken with my aunt, although my mom told me that some Army reps spent 8+ hours with my aunt on Monday (I think?) and so I need to get an update on that.  Haven’t had time yet, busy being sick and all that.

I hope to not leave the house the rest of this week, as doing so is a major PITA right now.  They’re fixing a few holes in the road, and this means that there are two large bulldozer/driller machines blocking the road (because it’s a one lane dead end country road) and it takes half an hour of sitting there for them to pack up the equipment and move out of the way for a car to get through.  I hope there’s no emergency before they finish, and I hope they finish soon.  It’s a pain.  I’m taking 5yo to the later Tae Kwan Do this week because they said they’ll only be working until dark, so if I take him to the 6:00 one I should be able to avoid the waiting… I hope.  That is the plan anyway, we’ll see how it goes tonight.  Or I could have hubby take him, and then I can avoid it altogether!  I am sick, after all, still recovering and what not…

That’s about all the update I can stand for now, I’m feeling much better today but still somewhat weak and tired.  I guess that’s to be expected, and I hope to be back to “normal” soon.

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Health Care Rant

This post probably has to come in two parts, because if you don’t have the back story then it won’t make a bit of sense.  So, the backstory is that I belong to a forum of mamas who like to eat bacon and bitch about the injustices of the world, and yesterday morning I was having a particularly bad day and wrote this:

Warning, rant ahead. 

I really hope that Obama can do something to fix this situation because this really sucks. If anyone doesn’t know, I carry a terminal dx right now of idiopathic pulmonary fibrosis. It isn’t very well known although it is what killed evil kneival! At any rate, I see a doc at Ohio State every 6 months or so, and I’m on a whole plethora of meds including chemo meds and steroids and pain killers which allow me to go about my day with my five kids. In January my dx might be changed to bronchoalveolar adenocarcinoma, a rare lung cancer if I agree to allow the OSU doctor to repeat the open lung biopsy. So I may or may not have cancer.

I am on disability despite having an MA and being one quarter short of my RN because I can’t breathe and therefore I can’t work. So I am on state insurance, medicaid, which has been a blessing because without it I’d probably be dead by now. I just moved from OH to WV, and I am in the process of trying to switch everything and my WV medicaid kicked in Nov. 1. My OH family doc decided he thinks I’m a druggie and will no longer write my pain meds script, and I am searching for a new family doc as well as a local pulmonologist in case I need tending to locally (in case of sickness, pneumonia, exacerbation, etc.) Ohio State is about 3 hours from me and it takes MONTHS to get an appointment there, not exactly helpful if you’re down with something ya know?

So, I’m calling around and there are NO FUCKING DOCTORS around me that take medicaid if you are a new patient. Seriously, the only option I have is the walk-in clinic at the WIC office. What are the odds that anyone at the WIC office clinic knows anything about my disease? Slim to none, that’s what. And furthermore, there is a big ole sign as soon as you walk in that states that they are prohibited by contract from prescribing narcotic pain medication, so they wouldn’t/couldn’t give me that anyway. 

So, let me recap. I have 5 children, the youngest of which is just getting ready to turn 2. My life expectancy is less than 5 years with my current dx, and less than that if they decide it is cancer. I have pain with every.single.breath and I cannot have a script for pain meds because someone somewhere thinks I am addicted… why this is a problem, even if I am, is beyond me. Why I have to live in pain is beyond my scope of understanding. I cannot get a local doctor who is knowledgeable in my disease because apparently state insurance does not pay enough to make it worth a doctor’s time to see me. So here I sit where I will suffer in silence until in the end I wind up in the ER from lack of meds/chemo/steroids or when/if the pain becomes too much to bear.

I am not abusing your fucking narcotics, I am simply trying to enjoy what precious time I have left with my children. I am trying desperately (and unsuccessfully) to maintain a quality of life that allows me to be an active participant in the lives of my family rather than a vegetable lying in bed watching them from the window because I’m tethered to my oxygen machine and in too much pain to make it outside.

FUCK YOU AMERICA’S FUCKED UP HEALTH CARE SYSTEM AND FUCK YOU TO THE DOCTORS WHO CANNOT BEGIN TO UNDERSTAND WHAT I LIVE WITH EVERY FUCKING DAY.

The end.

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