Mundane Me

Sometimes I have to remind myself that it does serve a purpose to blog about the mundane crap.  Sometimes I sit down to type, and think, “Well, nothing interesting here, just an ordinary day full of knitting and feeding kids and being happy to be breathing.”  But every day should not be full of drama, or excitement, or really anything at all.  Most days are supposed to be boring, mundane, and ordinary.  For that reason, I’ll make it a point to not be absent during these boring days and share instead the very familiar, typical, and opposite of exciting goings on in the Pali house.

My 11yo spends the vast majority of his time at his dad’s house, especially during school time.  He rides the bus to and from school from Dad’s house, and really only stays here on the weekends.  However, since we both received iPads for xmas, he has insisted that every night we open up FaceTime and be planted firmly in the midst of the other’s living room.  Now, at first glance this is kind of sweet – he wants to spend time with Mom, right?  And he insists that his brothers (my 5 and 8 year olds) get on the xbox at our house, and he gets on the xbox at his house, and they play games all together.  Or they get online at their favorite kid gaming site and play all together that way.  So it is kind of cool that technology can allow him to be here even when he’s not here.  But many nights, he doesn’t want to play with his brothers, or vice versa, and he just wants me to sit the ipad in the middle of the coffee table and leave it there.  He goes off to do his thing, he’s not sitting there with his ipad (nor me with mine), he just leaves his sit in the middle of his living room.  I guess he wants to be here, even when he’s not here?  This didn’t bother me at all until my daughter so gently pointed out to me that my xmil was listening in to our evening goings on and finding fault with my parenting skills.  The finding fault is nothing new or unusual, I just don’t like giving her new fodder if I can help it.

As a result, I’ve started making him turn off the ipad when he’s not actively sitting and talking to me/us on it but he whines and cries and thinks I don’t want him in the living room.  I think I shall have to have a little discussion with him this weekend about my privacy and some reassurance that it’s not him at all.

And in other mundaneness that isn’t really mundane at all, jerkface hubby has bought us both new iPhones.  The 4s.  I shall have a new toy.  On the one hand, I am super-excited about the new toy prospect of it as I’ve wanted one since I first saw what they could do.  I balked about cell phones and new technology for so long and I really really didn’t want one for the longest time, but I finally got an ipod touch and that’s all it took.  I got an ipad for Christmas (thanks x-hubby!) and I think that is part of the reason that jerkface hubby is getting the iPhones.  He felt one-upped, but he couldn’t just come out and say so.  He also knew that I really really loved the 4s and I wouldn’t say no if he bought one.  So, the upside is that I’m getting a new iPhone!  The downside is that I’m on jerkface’s cell phone plan. Nuff said.

In other maddening news, he called tonight to say that our new iPhones had arrived (he ordered them yesterday and they were due Monday).  He wanted me to drive to Chicago tonight or early tomorrow morning to help him set his up.  When I told him this was not possible (plans with the kids tomorrow) and I’d be there Sunday as planned, he proceeded to read me the instruction manual over the phone and expect me to translate so he could understand.  Really, dude?  It’s just not that difficult.  I’m pretty sure my 8yo could have set it up.  Possibly my 5yo if there were enough pictures to go with the text (he’s only just learning to read).  I wound up putting him on speaker phone and just uh-huh-ing every so often until he finally realized that it really was just that easy and he didn’t need me.  He promised to “FaceTime” us soon, so I’m waiting with bated breath.

In further maddening news, I asked him during this call if we could take the boys shopping for new shoes while we’re there since their old ones are stinkified thanks to having to wade through some flood waters last week, and his response was so classic of him.  “I’m not sure, I’ll have to check my bank account.  I may not have enough right now, they may have to wait until next month.”  Dude.  Seriously.  Fucking put shoes on your kids’ feet before you buy the new toys for yourself.  This is why I have the primary responsibility of caring for the boys. Well, it’s one example of many.  It’s infuriating and crazy-making.

Well, there you go. There is but a snippet of the every day happenings in the Pali house.  I’m going back to knitting – working on some mittens for my 16yo and just finished a hat for my eldest son’s girlfriend.  I feel all special, knitting for teenagers and shit.  Two of them even!  If they’re just humoring me I don’t mind and I”m glad they’re polite enough to do so. 

I have my space again

I have never been so happy to see someone go in my life.  Having him here was a challenge, truly.  I was seriously at the end of my rope by the time Sunday rolled around, and he really really wanted to stay until Monday but I insisted that he had overstayed his welcome and someone was going to see him and report him for being here too long and mess up my subsidies and what not.  Completely fictional, as I’ve hidden his visit from no one and everyone who is anyone knows about him staying for the holidays already, but if that’s what it takes to get him out of my house without incident then so be it.  He’s gone, and I’m a happy girl for it.  Right now I have so many things in my head that need to get out and it’s difficult to compartmentalize and type them out in any sort of order, so I apologize in advance if this becomes rather long and rambley and incoherent.  I don’t want the sheer volume of things I have to bitch about to keep me from writing at all, so I’ll just let it go and see where that takes me.

First and foremost.  The man stinks.  I don’t mean just your regular stinky-man stank, oh no, this is much, much worse.  He reeks.  Something is seriously rotten and wrong, and it’s not like we’re on good enough terms that I can just suggest a shower and some mouthwash.  The first morning that I went to wake them up, I opened up the door to the bedroom (he and the boys all slept in the boys’ bedroom, and I hibernated/vacationed in the other bedroom) and thought the smell would floor me.  However, he’d traveled the day before and it was early (ish) morning and I assumed morning breath and need for shower and all that stuff.  I suggested all boys should have a shower so we could start our day, and they all did, and that seemed to dissipate the odor for a while.  Then, as mentioned, I mostly hibernated in the other bedroom with the door closed and left him out here in the main apartment to play with the boys.  I spent most of the day out with them on Christmas proper, but otherwise I mostly knitted and read and played on my new toys.  Every time I emerged from my safety cocoon, I was met with an assault on my poor sensitive senses the likes of which I have not experienced since our house was invaded by a skunk family.  It was bad.  He just stinks, like bad breath and rotten ass.  Of course, I think he’s full of shit and acts like an ass so maybe that explains it, but it isn’t just me.  My daughter came over later the day he left, and she remarked that my apartment rather smelled like a rotten mouth and she hoped that it would get better since the source had presumably gone.

Ew.  How gross.  And my poor, sensitive, five year old asked me one morning why daddy’s mouth smelled yuck and I told him, “That’s why we brush our teeth every night darling!”  I later heard him telling Daddy from my safety net in the bedroom, “Daddy, if you don’t want your mouth to smell yuck then you have to brush your teeth EVERY DAY!”  The kid tried.  I don’t know that it was his breath though, can breath permeate everything like that?  I mean, the odor was certainly reminiscent of bad breath, but it was more of a body odor than a mouth odor.  Ugh, I can’t analyze it any more, I need to just forget about it.  I can’t imagine that he’s dating currently with this… issue.  Or, I can’t imagine that he’s getting any repeat dates, let’s put it that way.

We only had one spat, and that was the day before he left.  It was taking everything within me at that point to not explode in the face of his self-righteousness, but I was able to mostly contain myself and hold it all in for a later therapy appointment.  However, when he started arguing with me about the state of my car and how it had been, it was more than I could bear and I lost it.  At some point, something happened to the spring cylinder things on the back lift gate of my Jeep Cherokee, and it just happened to be a point between when I was in the boot last and when he was in it first.  So what happened was him coming to ask me how to make the lift gate stay up, and me telling him that it should stay up automatically (it always had until then, why would I think anything differently?) It ended with him making fun of my piece of shit car, which just went right to the very core of me considering the recent acquisition of his $11k Honda because anything less would be an affront to his character.  Not to mention me still being pissed that a $1300 car is good enough for me, and his kids, and he expects us to drive back and forth from Ohio to Chicago repeatedly, but he cannot make his way around Chicago in something less because it might leave his precious ass at the side of the road and then what would he do?  What infuriates me, really, is that he cannot bring himself to see (or acknowledge) the double standard he’s got going on here.  What’s good for him is NOT good for everyone else, because he is a special snowflake, dammit, and if I and the rest of the world would just wake up and notice that then we’d all get along just fine.  Of course a $1300 car is good enough for me because I can make it work but he cannot.  And he cannot understand why this might be a problem at all, it just is!  I gave up to keep the peace because I cannot change his mind or perspective or make him care, and it wasn’t worth it to me any more.  It was, at some point, and I used to “make” him see my point-of-view, but no more.   I don’t care any more.

I was ready to strangle him by the end of day one, as he charged in here and shook his head at the state of my apartment and declared it filthy and unacceptable.  He was full of guilt for not being here, and wanting to prove to me how very useful he could be.  I was feeling intruded upon, and sought to remind him that we’ve been getting along just fine without him for over two years now.  He was doing things like… pulling the drawers out of the bottom of the fridge and exclaiming, “Ew, when was the last time this was cleaned! Have you done it at all since you’ve moved in?  What are those people doing who are coming to help you???”  I was very proud of myself for remaining very zen and letting it go.  I just left him to do his thing and went “on vacation” in the other bedroom.

Now for some positives, because I’m almost to the end of my typing limit for now and I hate to just have a whole page full of bitchiness.  His phone didn’t work here, and as such he wasn’t able to communicate with anyone from Chicago for most of the time he was here.  This meant that he spent most of his time focused on the boys, and they had a blast playing all week.  They broke in all the new games Santa brought, and it was warm enough that they were able to go outside for a bit and work on the five year old learning to ride without training wheels.  It’s fairly obvious that he does at least care a great deal about them and he is a good dad to them (when he’s with them).  I’ll try to keep my focus on that and how happy the boys are at the moment and hopefully that will get me through the times that really suck.  I did determine, as if there were ever any doubt, that I will never again be happy sharing my living space with another adult.  Oh no.  I need to be in charge of the space, I have things the way I want them and I do not appreciate anyone messing with them.

 

Merry Christmas!

Last night was Epic.  That’s the best word I can think of to describe it.  The magic of Christmas is still alive and well here at my house.  I have to say that none of this was my idea, I was only playing along, and I have to keep reminding myself that there are very good reasons that I am no longer married to x-hubster.

So, he decided to “round out” my boys’ Christmas list, and anything that they had asked for that I didn’t get?  He got.  And then some.  They got things they didn’t even know they wanted.  Well, they’re still sleeping as I type so I really shouldn’t make that past tense yet – they still don’t know they want them.  Giggle.  Anyway, while we were out shopping one day he came across a Santa suit on clearance, and he snatched it right up.  And concocted this elaborate plan whereby Santa would deliver the gifts to my boys.  My 8 yo (birthday in 3 days, omg!) was on the verge this year, and didn’t really believe in the magic of Santa any more.  He was really struggling with a lot of things, one of which being that he is old enough to realize that Mommy does not have a lot of money and might not be able to buy him all the things his heart desires.  It was fairly obvious that he was protecting himself from disappointment, and he was disenchanted with the whole thing.

Well, that must have gotten to x-hubster and reminded him of a similar time in his life, because the man went nuts I’m afraid.  Last night, he put on the Santa suit and texted me to let me know he was on the way so I could keep the boys entertained and away from teh door.  He unloaded all the stuff he’d gotten (including a new bike for 8yo, I”m telling you, nuts!) and knocked on the door, then went to the parking lot close to my car (so he’d be away from the action and they wouldn’t see his face) and started Ho! Ho! Ho! ing.  My 5yo went and answered the door, and oh wow, that is a reaction I will cherish and treasure forever and always.  His eyes lit up and mouth dropped open and he exclaimed, “SANTA!!!  OH WOW A MILLION PRESENTS AND SANTA COME LOOK KAKI MOMMY DADDY SANTA!!!”  My 8yo ran to the door in time to see Santa walking away (that was the intent) and saw all the piles of goodies, and that child is now a firm believer in magic.

I have tears (of joy) just thinking about it.  There is no price tag that can be put on that.  They’ll remember this for the rest of their years.  The 5yo kept saying, “He’s early, we didn’t even go to sleep!  We weren’t even sleeping!”  And the 8yo?  “I didn’t even ask for a bike how did Santa know to get me a bike?”  Both their eyes were twinkling brighter than our Dollar Store Christmas tree.

Now I’m just waiting for them to wake up so we can get the day started.  It’s 7:30 and I can’t believe I’m still the only one up and at ‘em!  I promised the 8yo mountain dew apple dumplings for breakfast, and they take 45 min or so to bake, so I think I’ll go start them and maybe by the time they’re finished someone else will be awake!

Oh, and jerkface hubs is here but I’m doing a great job of not letting him interfere or kill my joy.  The boys are really happy to have him around, and I’m making this whole holiday all about them, so I can deal even if it’s not my first choice.

So Merry Christmas everyone, and I hope your day is awesome and filled with love.

It doesn’t feel very Christmasy!

But I’m not going to complain.  We have a high of 60 today and tomorrow.  Imagine that.  It’s the first time in a week that I’ve been able to leave the house, however, as the winter chill kind of closed my lungs before that.  Today I managed to make it out to the grocery store to stock up on necessary supplies (Mountain Dew!) but even that little bit of activity wore me out.  I have to sit in the car and recover before I can drive home.  It’s so frustrating.  Not sure what’s going on with my lungs, as the last bronchoscopy I had indicated that the scarring (fibrosis) was not progressing so quickly, and the mucous that usually hangs out there had been obliterated by prednisone.  So there appears to be no clinical reason for the increased yuckiness, and yet, I can’t breathe.  Frustrating as hell.

We are all ready for Christmas and the little guy (five now!) is having a really hard time waiting.  He tells me he hates Christmas because he hates having to wait for all his stuff.  I’m really looking forward to their faces on Christmas morning, and just hanging out and spending time with them.  They’re what keeps me going, now more than ever.

Okay, back to knitting my fingers down to the nubs for bff.  I’m almost finished I think!

Percs and Pain (again)

I have to come back to this topic yet again because my life has returned to this problem, yet again.  My lovely PCP informed me at the end of Sept. that he was leaving the clinic he’d been practicing at and would be opening his own practice.  He said it would work out better for me in the end, as he intended his new office to be closer to my town and I wouldn’t have to drive an hour and fifteen minutes to see him once he re-established himself.  He gave me no real time frame for his length of absence, and I tried not to panic as I wondered who else would oversee all my complicated issues and who would write the prescription for my pain management in his absence.

I decided that it might just be easier to stay with the clinic and see one of their new docs, since they’d sent me a lovely letter in the mail informing me that my PCP had left and I needed to select a new doctor.  The letter explained that either one of their other two doctors would be more than happy to take over my care where PCP had left off, and they stressed the continuity of care and remaining within the same practice and all that jazz.  I figured that things were pretty stable at the moment, and I don’t need any changes to meds or anything like that, just a continuation of the status quo and someone to write the same prescriptions I’ve had for years now and keep an eye on my bloodwork, so I made an appointment with one of the other doctors there.

Said appointment happened to be on my birthday, the middle of November, and so I drove the hour and change to the clinic and met with my new doc.  She entered the room and said hello, and immediately proceeded to tell me that they were not a pain management clinic and could not write prescriptions for percocet and that I would need to be referred to a pain management specialist.  Oooookay.  She was harsh and rude enough that I burst into tears, and she went off on a tirade about drug abuse and heavy narcotics and the problems we have locally while I sobbed.  I did manage to explain that I was not asking for a change in meds, just the same regimen I’d been on for the past several years.  She refused, and said only that they’d call with a referral to a pain clinic.  I asked her to make it be a clinic local to me so as to not have to drive an hour and change, figuring that if I were going to switch then I might as well make it more convenient for myself.  In the meantime, as far as she was concerned I could just quit percocet cold turkey – not her problem.

Two weeks later, and their office finally called back with a message about the referral.  (I should note that I was not out of percocet during this time but ONLY because I’d been using less than prescribed since starting the fentanyl patch earlier this year and had a little extra stashed) Turns out there is only one pain clinic in my town, and they can’t help me because they “don’t treat lung disease.”  I suppose I should show up and say my joints hurt and my back aches?  I don’t know, I don’t have the answer.  I did a little research on my own and found a place called Palliative Care, which seems to be connected to hospice but is more for long-term chronic illness rather than end of life comfort.  Of course there are none of these practices in my town, but there is one in the town where the PCP clinic is, and one at Ohio State with BUD, so I thought I’d investigate *this* route as a means to symptom and pain management.  They seem to be unafraid to address these issues in people like myself, so it’s worth a shot, right?

Well, I called the one in Clinic-Town myself and after being transferred about 800 times and hung up on and called back and just generally bounced around, it was determined that they could not help me.  They really wanted to set me up with hospice, despite the fact that their website advertised palliative care as well, and they wanted to set it up in my home.  The problem was, they couldn’t because I’m not in their county, and they wanted to find someone in my county… only there *is* no one in my county.  I am quite willing to drive, but they are not set up that way and therefore, no help.  I was so frustrated from dealing with all of this that I thought maybe I’d ask my PCP Clinic doc to set up a referral to the Palliatve Care Center at Ohio State.  So I called back there and talked to the same woman who had informed me of my inability to be referred to a pain clinic, and asked her if they could refer me.  She had never heard the word “palliative” apparently, and made me say and spell it over and over and over and over.  It was soooooo frustrating (for both of us!) and in the end I was yelling at the phone, “P as in Peter, A as in apple…”  Still, when she repeated it back to me she had T-A-L-L-I-C – which, I have no idea how she got T from P as in Peter, but okay.  At that point we were both super frustrated anyway, and she said, “I’ll speak to your doctor about this and I’ll call you back.”  It’s been a week now and I still haven’t heard back from them, so who knows.

So now here I am again with  no pain relief and no doctor (well, technically I have one but we do not like each other) and limited options.  I don’t know if palliative care is something I should be pursuing or not, and I don’t know who to ask.  My appointment with BUD is not until Feb., and I will be out of percs waaaaay before that.  I think it sucks and is ridiculous that the crack down on prescription drug abuse has the side effect of forcing people like myself to spend their very valuable and precious remaining time chasing down a doctor who is not afraid to treat them.  If I had money I could hit the streets and buy myself some percs, the crack down hasn’t stopped the criminals.  It’s only made it more difficult for people like myself and means that I am unable to relax and enj0y my time remaining with my kids because I am either in pain or worried about being in pain and unable to stop it.  It sucks, and I don’t know where to turn, or how to fix it, or what to do about it.  Eventually I know it will stop because I’ll be unable to take a deep breath due to pain, which results inevitably in pneumonia, which results in an inpatient stay, which will result in many narcotics at quite the cost (both to myself personally, my family, and the system).  It seems really stupid and unnecessary.  It seems like there should be a way for any doctor to say, “Oh gee, this patient has a chronic and ultimately terminal disease.  I think it’s probably okay to make sure they’re comfortable and I won’t get in trouble for writing a script for narcotics under these circumstances!”

Anyway, that’s where I am.  I’m struggling again and it sends my anxiety through the roof because I remember that pain all too well and I do not want to go there again.  When every breath hurts, I swear you just do not want to take the next one.  There have been times that I wouldn’t have inhaled if my body hadn’t forced me.  I’ve been done.  And in my very biased opinion, refusing to medicate that pain is just cruel and is not helping the crusade against prescription drug abuse at all.

So Thankful

I’ve had a bit of a crazy week to say the least, and haven’t found the time to write yet, but I do have to take a short minute and say how thankful I am for one more Turkey Day with the kidlets.  Over the years, Thanksgiving has evolved to be “my” holiday with all the kids, and it’s the one day of the year that I have them all together at the same time any more.  This year has been a little challenging and somewhat disheartening as I wonder and worry about the state of my lungs and my overall health; this week has been really hard on me, and I’ve felt it, and I’m pretty sure that at least the older two kids saw it.  My daughter is sixteen this year, and we get up early together on Thanksgiving morning and start the days’ cooking.  She had to help more than ever this year, and while I don’t think she minds per se, I’m sure she noticed.  I don’t know how many more Thanksgivings I have left in me, so I’m glad this one went well.

Stupid Predisone, How I Hate Thee

So my 11yo guy has been fighting this bronchitis for nearly 2 weeks now.  Actually, earlier this week he had a chest xray and the ped decided that he has a “touch” of pneumonia.  He hasn’t been to school for two full weeks.  He will never ever get caught up, despite having all his work at home.  Anyway, since he’s been sick he’s been stuck at his dad’s and unable to come hang with me (because really, if I caught this one I’d be in the Tower again in a flash) and he’s been home alone a lot and bored and so on.  At any rate, he was back at the doctor again yesterday but I haven’t talked to his dad yet to see how he’s doing and if he’s improved… I didn’t get a call saying he was admitted so I will assume that no news = good news for now.  Hopefully he is better.

In the meantime, I’ve been on the verge for like a week and a half, trying to convince myself that I only had a “touch” of something and was not getting sick with what my little guy (and my mom!) had – the nasty, chest-infecting, bad news cold or whatever that’s going around.  I finally had to cave and see a doc and get a zpack for myself, and my stupid prednisone is back up to 40mg/day for the time being.  Now, I can go a day or two on high doses of pred and not feel *too* much of a difference (aside from the never-ending hunger).  However, after two days?  That shit really starts to get to me!  I get all shaky and jittery and my legs feel like they’re going to bounce right down the hallway without me when I try to lay down and sleep at night.  It’s a horrible, awful feeling that I really can’t even describe but it makes it nearly impossible to sit still and sleep is just a distant memory.  In the midst of this Roid Rage from hell, I drove the 400 miles from my apartment to Chicago to retrieve my boys from their dad, and what a joy that was.  I’m still in Chicago, going to stay here a few days and recover before I make the trip back, and I still hate it here as much as I ever did.  I made excellent time on the drive up which was actually very stupid of me because it put me smack dab downtown Chicago at 5:30 on a Friday evening.  Yeah.  Brilliant.  Love that traffic.  Miss that all the time when I’m stuck behind tractors and amish buggies…

So last night I couldn’t sleep at all because of my legs wanting to bounce down the hall without me, and I’ve been up all night after driving all day and have had my morning 40mg of prednisone for today and I think I might have to kill someone.  My stomach is a mess from the stupid zpack, my endocrine system is a mess from the prednisone, my patience is zero because I’m in Chicago with jerkface and I like him about as much as I like Chicago…  Ah well, at least the end is in sight and I have my boys back.  I have some rambling to do about doctors and meds, but will save that for later once I can form thoughts a little more coherently.  Right now I’m kind of on auto-pilot or something, it’s a weird place to be.  I really wish I could just sleep a while, but that’s not going to happen for a bit so I guess I need another solution…

Oh!  On the bright side, in a couple of hours I”m going shopping at a local fancy yarn shop to buy yarns for making xmas presents!  I”m looking way forward to that at least, and having shopping options is one of the FEW redeeming qualities about Chicago.  There, aren’t you proud?  I said something nice.