It's a Job.

So I'm rapidly learning that this whole "sick" thing is pretty much a full time job in and of itself.  I spend the entire day today on the phone scheduling appointments; getting documents notarized to maintain my health insurance; talking to the health insurance company; rescheduling appointments; getting documents faxed from one doc to another or to the blood letting depot that I seem to visit at least once a week.  Five o'clock rolls around and I'm disappointed because I can't get in touch with anyone anymore.  This is sad.  And tense.  

Then I got to spend a good hour on the phone with the customer service department of my satellite tv provider.  They're assholes.  It's just that simple.  They lie constantly, no one seems to have real authority, and their policies are virtually non-existent.  When I signed up with them I bought a package that required an 18-month contract, but also included a $30 a month rebate for ten of the eighteen months.  Of course the form for the rebate didn't show up with my bill until two months after I signed up and the rebate expired a month later.  I sent it out, promptly, but neglected to include some number from my account id and the rebate was returned to me with instructions to correct and return it...Two Months Later.  I fixed it and returned it, but it was past the expiration date and the satellite service just ignored the whole thing.  I had some really ridiculous billing issues with them in the first six months of our contract, so I didn't even broach the rebate issue until early this year.  The first, second, and third time I contacted them I just hit a wall.  They told me that I hadn't turned in the rebate form in time (even though they had sent it back to me with NO TIME to return it appropriately) and that there was nothing that they could do.  Each of these times I didn't have time to sit on the phone and go up each rung of the ladder for an hour and a half, so I had to let the issue drop.  In May, I finally got the time to sit and argue my way to someone who could actually do something, and this pleasant woman assured me that I would be receiving the full rebate applied to my bill for the next ten months.  Very Nice.  I thought I was done with their ridiculous billing and would finally be paying the price I'd agreed to pay in April 2007 when I signed up for the service.

Apparently she was a big fat liar.  They gave me the rebate...For Four Months.  Last month they billed me the full amount again.  Grrr... So today I got on the phone and explained my situation to like six different people, some of which told me that there was nothing they could do, some of which told me that I could have the rebate and a credit for last month applied to my next six bills; that doesn't really help much though because their customer service is so horrific that there is no way that I'm renewing my contract in October when it expires, so I won't have six more bills to apply the credit to.  The final guy that I talked to, when I told the six-more-months guy that I wanted to talk to someone who had the authority to actually just credit my damn account (or return my money to the freaking credit card) for the missing rebates, completely reversed the previous position and told me that on the call with the pleasant woman who promised me my money, she had told me that I was going to get three months of the rebate - as a courtesy.  But they gave me four months?  No.  She promised me my damn money and they record those calls.  So I told him I'd agree to give them two weeks to find the recording and get me my money back or I was putting a stop on the credit card payments for both August and September and take them to small claims court.  He didn't have much to say at that point; he agreed to investigate it and we left it at that.  I really hope he doesn't think that these are just idle threats.  I'm a real bitch at the moment and I'm not up for taking anybody's shit, especially this company's.  They've lied to me and given me the run around on a number of issues and made me miserable to myself and to those around me (poor BF).

So that was my fun day.  My health insurance still isn't active so I can't schedule half of the testing that I'm supposed to be have ASAP.  I want this crap done so that I can have the doctors at the Temple Lung Center report the results to SSDI and I can finally get the damn thing approved (not to mention the medical decisions that will be made based on my new chest CT, pulmonary function tests, blood gases, new six-minute walk test, and a meeting with a great gastroenterologist).  I also managed to get a meeting with someone at the Disability Services office at Temple U., so maybe I'll have some momentum toward getting certified to teach.  It really is a full time job.  Getting all of this bullshit scheduled this week and then going to all of the appointments over the next two weeks or so, talking to Social Security, talking to DARS at Temple, getting them the appropriate paper work and approvals.  

So I've stopped with the job search for now.  I figure that I'll be a shitty employee anyway and won't possibly be able to actually hold on to a job; I'm just going to wait until we know all of the info about the PAH, and the pulmonary fibrosis, and the mixed connective tissue disease.  So at some point in the next six months I should hopefully be on more knowledgable ground regarding my own body and be more in control of it and it's ability to work, or perhaps even student teach, though I still don't think I'll ever be able to work 7-3 five days a week, but we'll see what Temple's Disability Office can do for me before I rule that one out.  

It's weird to make the decision to make no decisions.  To just put life on hold.  It's incredibly stressful on my relationship with BF.  We've been having little ridiculous fights interspersed with deep talks about our future.  It's so hard to try to plan a future when you have no idea what the future holds.  And it's hard to work out this household crap still...the basic relationship crap...chores, sex, responsibility, getting our place running smoothly while I can't do more than ten minutes of housework without my heart rate shooting up into the 140's and my pulse o2 dropping into the 80's.  It sucks.  He hates that I can't just pick up the slack, I hate that he can't understand why I can't pick up the slack without resenting the hell out of me.  There's clean, folded laundry on every piece of furniture in our living room; the kitchen floor needs to be mopped; the coffee table is covered in crap that just doesn't have a home; the bathroom needs to be cleaned; we still haven't gotten all of the boxes unpacked from when we moved in here a year and a half ago.  It's frustrating.  Really Frustrating.  For both of us.  And I understand where he's coming from; I wouldn't want to come home from work to someone who has been home all day and see this. But we still have those nice long talks about buying a house, getting married, remodeling a house, having a child, which doesn't go very far, but when you make the decision to make no decisions then you really can't ask your partner to hypothesize about your future on a regular basis.  So I guess what I'm really saying is that I'm in a holding pattern.  I hope and pray that everything works out and I really think that they will...but getting through this holding pattern is just so hard.  I feel useless.  I feel like I've got nothing to offer.  It sucks, but there's hope.  And it is so definitely a full time job; even if I didn't have to deal with all of the doctors visits and assorted tasks that revolve around "SICK", I would still have to deal with the emotional roller coaster that comes along with not having any idea what life is going to be like in six months or a year or tomorrow for that matter.  

Geez I hate these bitchy posts.  I'm not miserable, but the good parts of my life are like a break from the stressful parts, so there's much less to write about.  We have great long visits and dinner with my dad and stepmom and the kids every feasible Sunday night.  I love them.  We spend the evening with BF's mom every Monday (or almost every Monday) and I really enjoy the time that we spend with her.  I read like a crazy person.  I sit around with my mom and BF whenever the mood strikes us and we all get along so well it's almost surreal.  I have joy.  The stress just seems to constantly overwhelm the joy.  That's what the ativan is for I guess...though I've been using it only very rarely, when things get overwhelming, when I feel like crawling into a hole and disappearing for...well at the time it usually feels like forever.

So thanks for reading.  I know I'm no fun right now.  I know that it must sound like I'm a spoiled child who just bitches and bitches and can't focus on the happiness in her life.  I'm really a generally pleasant person in reality; I'm excellent at putting on a happy face.  This is just my space to get it all out.  

[And I nearly forgot to mention how utterly enthused I am about my impending sibling!  A. is due in thirteen days, but has never gone to term so we're expecting a baby in the next week.  I really can't wait.  I am so happy about this baby now and I can't imagine how incredibly elated I'm going to be once I get to hold that tiny little person, cuddle it, sing to it, spend as much time as my dad and A. and BF will stand with it.  I have joy, I am far from miserable.  I just have to make that my mantra.]

1 comment:

  1. It is extremely hard for our loved ones to "get" it sometimes. Actually, some of them just don't get it at all. Have you shown your BF The Spoon Theory? I have sent it to many of my family and friends, and it does help! It doesn't pertain directly to PHers, but it works well with anyone dealing with a chronic illness. You can find it here: http://www.butyoudontlooksick.com/the_spoon_theory/.