Shhhhhh! (Seekrits contained within)

First – it’s okay to post it here I think because no one who knows them IRL reads here. I’m gonna be a grandma! OMG! I did (or will have) make (made) it to my 40^th before that happened, but barely. By a nose! I knew it was coming, I saw all the signs and symptoms and am pretty sure I told a couple of people several months ago that I was calling it then. They, however, seem genuinely shocked. Especially the girl. Oh, maybe should clarify that this is my 21 yo son and his girlfriend, not my 18 yo daughter. It could have been either, I suppose, but I would have been less enthusiastic about my daughter. Only because it’s not something she wants right now, not to mention that her dad would kill her.

 

So anyway, they usually come up on the weekends for dinner and hanging out, and she didn’t come this time because she wasn’t feeling well. I asked my son (I calll them A and B in real time, so will do that here as well) what kind of sick, as I had a hunch, and he admitted that she was late but really not regular and they didn’t think it was possible. Apparently B had been told she probably wouldn’t be able to conceive without help, and as such they weren’t being very careful. I sent him home with sticks to pee on (well, for her to pee on) and instructions to text me when she knew.

 

I feel for B at the moment – she says her family will not be supportive and she can’t tell them yet. Meanwhile, they’re still living at my mom’s, in an environment that is not good for a baby, and she is unemployed and legitimately worried about being able to find a place. Add to that the lovely hormones of early pregnancy, and the poor girl has called me and texted me so many times over the past two days just crying over this or that. She’s over the moon thrilled, but also petrified of what this means. I reassure her that it’s all perfectly normal, and I really think she’ll be okay once the hormones settle down and she gets used to the idea.

 

So I have to blab here, because I’m so excited and must start knitting immediately. Since I called it MONTHS ago (lol), I’ve had plenty of time to get used to the idea and am on to the next stage. But I’m not allowed to mention it IRL because they aren’t ready yet. So I will gush here instead. Regardless of what the future brings, this has been a good year. I really thought that I wouldn’t see 40, and I’m 31 days or so away from that right now. I mourned the fact that I wouldn’t get to meet my grandchildren, and while I can’t be certain I’ll still be here by the time he/she arrives? I will at least have the chance to knit some lovely booties and gush over my firstborn’s firstborn-to-be. I can’t describe how that feels.

Now if you’ll excuse me, I have very important bootie knitting to attend to.  

Playing Catch (up)

Sorry for the long silence. Life has been frustrating, and when life is frustrating I am less likely to want to talk about it. Wonder why that is. I think my mom is just the opposite, she loves to bitch about anyone and everything. I think she lives for that most of the time. When I have nothing good to say, I don’t really want to say much at all and tend to just hole up in my safe space and ignore the world as much as possible.

September was a very challenging month, on so many levels. I spent more than half the month fighting with government agencies (well, only one really) about our food stamps and medicaid, or rather the lack thereof. It was absolutely no fault of my own that got our benefits canceled, but I am quite certain that the folks who work there have heard every excuse under the sun. One hour of one day sitting there just listening to what was going on around me was enough to convince me that I could never be a social worker for such a place. I do not have the patience for that type of thing, not in the least.

At any rate, I finally broke down about three and a half weeks into the month, when I really really really hit bottom. No meds for my guy who really needed them, and no food stamps at a time when I needed them even more than usual. I really needed the convenience of pre-packaged, processed food, thanks to being unable to cook due to brokenness. Since those types of things tend to not be cheap, the lack of food stamps hurt even more than it would have typically when I don’t buy as many pre-made things.

So finally, I combed through the DJFS website and found an email connection through which I typed up a desperate plea for assistance. I had heard nothing on my case since the end of August, and I was at the end of my rope. Although I had tried repeatedly, I was unsuccessful in ever reaching another live person on the phone via any of the numbers that were available to me. I spent quite literally hours dialing, over and over and over, having nothing better to do with my time anyway, and the system just continued to frustrate me by hanging up on me time and time again. We’re sorry, all our workers are busy helping other clients. Please try again during regular business hours. Click. Start over. My email must have sounded just desperate enough, or I caught an efficient and caring case worker, or someone was just having a great day; whatever the reason, I got results! Nearly immediately! It was only an hour or two later and she had my food stamp card reloaded, and promised that my son could get his meds the following day. Apparently medicaid takes 24 hours to process.

I thanked her so very much and from the bottom of my heart for her help. I meant it when I told her that one person like her can make such a difference in the day and life of someone like me, and I really appreciated her taking the time to check on my case and get it through for me. She said the heartfelt gratitude was what kept her going in the hard times, so I guess we’re even.

I thought things would start to look up. I was wrong.

Had my daughter’s birthday the last week of the month. She’s no longer my little baby girl, she’s all grown up and a gorgeous 18 year old now. Bittersweet. We had a get together for her, and I spent a lot of time working on her gift (which is part of what contributed to my lack of blog entries I must confess). I managed to go through years and years and years of pictures and made her a scrapbook that covered all of her years. I also asked all the people in the scrapbook to write her a little note that had a story or some hope or wish for her or just something that she can keep, and put it in an envelope, and I put that envelope on the back of the page that belonged with that person. So she has a keepsake of photos from birth to 18 and a note from everyone important in her life. Excpet her dad, who refused to write one because he didn’t know what to say.

More to say on her birthday and such, but for now I”m just trying to catch up with the past few weeks.

Foot is still broken and not healing so well. Ortho is not worried, because he said that the spot where the break occurred is really difficult to heal even if one is not on many mg of prednisone. It hasn’t moved, and that is a good thing, because it means that it won’t need pinned to stay in place and such. It may still need surgery, like a bone graft or something, but I told him I had Big Plans in mid-November and broken foot or not, I’m not changing them. 😀 He said if we needed surgery it would be okay to wait until after that, no harm in just leaving the boot on to see what happens and maybe it will heal by then. I follow up the end of Oct.

So much more, but I am so done for now so that’s all you get. I’m fighting something lung-related and can’t decide if I’m trying to be sick or just adjusting to the weather or suffering from the day and a half without prednisone last week? Who knows, time will tell I suppose. I’m hanging in.

Still waiting

Still no food, and still no meds.  I still wait patiently for the magical day when my card will be reloaded and the pharmacy will call and say I can pick up their prescriptions.  There isn’t much else I can do at the moment.  I’ve been calling daily for the past three or four days, but I cannot seem to find the sweet spot that will connect me to a live, actual person.  It just keeps hanging up on me, and I am so frustrated with this system.

In other news, I was graceful enough to snap a bone in the side of my foot last weekend, and have been unable to do much of anything since then.  The world is a very frustrating place at the moment.  The dr. at the urgent care center was beyond rude and awful.  He said my foot didn’t “present” like a fracture, so he was sure it wasn’t broken.  I was 100% positive that it was; I both heard and felt the stupid bone snap.  And when he came back in to say “Oops, guess I was wrong!” he told me I’d have to take crutches, despite my informing him that I could not use them.  I mean, really, I’m there carrying an o2 tank… how do you really think I’m going to carry o2 and walk on crutches?  And this is discounting the fact that the chronic pain I deal with is right in the spot where crutches hit under my arm and there’s no way that I’m going to be able to manage on crutches.  But he insisted that’s all they had to offer, and so I had to take them.  I crawled to my desk chair when I got home, which my daughter pushed out to the curb because it’s on wheels.  And then the kids wheeled me inside.

They told me I’d need an ortho, but failed to give me a referral, so I just had to start calling Monday morning.  Thankfully a local dude was able to get me in Monday afternoon, and I did at least get good news in that I don’t need surgery or pins (most likely).  He ordered a wheelchair, which I’m supposed to be bound to for the next three weeks.  Today is Friday, and I’m still waiting for that wheelchair to show up.  Thankfully, someone had a walker that I borrowed and I’ve been able to get around the house with that.  But I haven’t been able to cook, take care of boys, or go anywhere except for from bed to bathroom and back for about a week now.  Almost.  I have strict instructions to not bear weight on said foot, and this is quite laughable to me.  I couldn’t even if I wanted to – resting it on the floor still elicits cringes and swearing.

My 9yo did a really great job of taking care of me those early days, when it hurt to move.  He cooked for us, took care of his little brother, got me whatever I needed, and was just generally awesome. That is about the only awesome thing going on around here though.  Sept. has really really sucked so far, and I really and truly hope it improves sometime in the near future.  I’ve had enough, world!

Need a vacation (from my vacation)

Just returned from a few weeks’ worth of travel, and I am not at all pleased with the mess I’ve returned to.  Not one iota.  I am unsure where to begin.

I think I shall start with the red tape shenanigans that encompass the social services of this country.  Or at least my county.  I was due for recertification for food stamps and medicaid, and this process should be quite simple.  They are supposed to call me and complete a phone interview, assuming nothing has changed on my case since this time last year, and that takes less than 30 minutes and things just continue on the way they were.  However!  i “missed” my phone interview, according to them, and as such I must be punished!  I did not miss my phone interview, for the record, they called the wrong number.  I followed the necessary steps and went online and officially changed my phone number, but somehow that did not get communicated to the office and so they called my old, nonexistent number and were unable to reach me.  Duh.  When no one called at the allotted time, I knew what was up and I called them.  It was no big deal, I got a real live and helpful person on the first try, and she asked for my correct phone number and rescheduled the interview.  The new time came and went, and no call, and so I called the office again to see what happened.

For TWO DAYS I tried to get through to the stupid DJFS office, and each time it was an 8 minute process of dialing and choosing the appropriate option and selecting things to get to the “I need to speak to a case worker” option, only to have it ring and a recording answer that would say “We’re sorry.  All our agents are currently busy assisting other customers.  Please try again during regular business hours, which are …..” (note I was calling during regular business hours).  I started at 8 one morning just to try to get in first (the recording said 8 to 9 was the least busy time) and that didn’t work either.  Finally, at like 9:30 of the second day, I got a live person.  Turns out that the nice and helpful person had written down (or typed in) a “6” instead of a “5” for one of the digits of my phone number, but they swore this was somehow my fault.  As if I’d tell them the wrong digit just for shits and giggles?  I dunno.  Anyway, they set it up again for the following day, and the following day finally got me a phone interview.  PHEW!  Just 3 days shy of the end of the month!

They did not inform me, however, that I’d been too slow and my benefits for Sept. were already cut.  So I went to get food, and had only $3 in food stamps.  Bummer, eh?  That’s not the worst though.  I thought (mistakenly, apparently) that kids’ medicaid had a grace period and couldn’t/wouldn’t get cut off immediately.  So I was really quite shocked when I went to get my kids’ meds and they wanted $180 for them.  Wow.  Well, I gathered up the documentation the DJFS office said they were waiting for, took it there in person and cried and said we had no food and that my kids couldn’t get their meds (the meds part is true, we have food and aren’t starving so no one worry about us) until they got it fixed, and I was informed that they are allowed to take up to 10 business days to process paperwork.  So it may be not this next week but the following week.  something like three weeks into Sept., then we can have food and meds again. Sigh.  And somehow this is all my fault.

So, I dealt with all that (well, as much as possible, the rest is just waiting) and now am dealing with my lovely, oh so functional apartment.  They came while I was away and installed new cabinets.  Yay!  RIght?  They are so nice, and the counter tops are awesome.  However, they took the contents of my kitchen and stacked them haphazardly in the next room and we couldn’t even walk through when we got home.  Now, my sister (also my aide worker) came the very next morning to fix it and put stuff away, but some of it had to be done that night (like sweeping the floors so it would be safe to walk through) and was left to the boys and me.  I did not appreciate that one bit.  BUT! The kicker(s) here?  I have no drawers!  No kitchen drawers!  Who in the world installs a new kitchen without drawers?  I have no place for my utensils!  And yes, I could put them in pitchers or something on the counter (and that’s where they are at the moment) but I have all of three counter tops – one has a microwave, one has a toaster oven, toaster, and crockpot, and the third is about six inches wide and holds the blender.  I’ve also lost cabinet space because they took out the ones beneath the sink to be ADA compliant (much better than just taking the doors off).

It’s so fucking disheartening.  I saw pictures before I came home, but they looked nice in photos!  I was excited to come home to a nice, new kitchen.  The stove is new, the fridge is new, and now finally new cabinets and such too.  Yay!  And to come home to that mess?  And then notice that oh, not only do I not have drawers? They also reinstalled the broken sink that was fixed with duct tape.  No, I’m not kidding.  They also lowered all the upper cabinets by 6″ or so (ADA compliance again) and didn’t paint, so the walls look like shit.  And the floors look like shit but those are due to be replaced any day now so I could have overlooked those if that were it.  Together?  It looks like a pile of shit, with nice cabinets and counters!  I guess I am too poor and do not deserve anything more.  It’s okay, I will sit here with my $3 worth of ramen noodles and just be happy to have a kitchen I suppose.  I am grateful, but not grateful or humble enough apparently.

And then I got new glasses and I swear they got the prescription wrong.  I wore them and had a headache so bad yesterday I could not get out of bed.  Not the migraine type (I’ve had those in the past) but more of the tension, throbbing kind.  Last night, I dug out an old pair of contact lenses and put those in, and this morning I’m quite fine after one round of ibuprofen.  It’s bummer, as I need to not wear contacts for a few weeks while I put these drops in for my new dx of glaucoma, but I suppose I will do my best to remember to take them out at night and do the drops and wait 15 minutes and put them back in.  I don’t like wearing glasses anyway, as I can’t see in the bright sunshine without sunglasses.  Just another thing that was disappointing and not going my way.

That said, I am due for some crap to go my way, don’t you think?  We went to the annual back to school picnic for our virtual school today, which should have counted as one of the face-to-face meetings for each of the boys’ teachers.  Except, the park was super busy and there were no signs indicating which shelter was the one we were looking for, and no one bothered to inform us, and I was out of breath as it was and not about to go walking shelter to shelter asking if we were at the right one yet.  To make a long story short, we enjoyed a picnic lunch in the park by ourselves, but we will have to do other face-to-face meetings with the teachers now.

I think I will just hide here in my crappy apartment until further notice.

On a trip!

Seems the majority of the month of August was spent traveling!  I had good news from BUD, and so didn’t feel the need to whine about it immediately.  Next appt. medically speaking is not until mid-Sept. and that’s with my new PCP.  I’m terribly nervous about starting up with someone new again, but I had little choice since I’m not willing to drive to D.C. for my old doc.  At any rate, I’m back on Amtrak tonight, heading back to Chicago where I will hopefully be able to pick up WIlma and the boys and head home.  Wilma has some issues, and jf has had a few weeks to work on them, and yet… he texted today to let me know that since it’s Labor Day weekend he is unable to find anyone TODAY to fix said issues and hopes that maybe probably someone might call him back in the morning so he can take it in.  While he’s due at Union Station to pick me up.

I have to admit I’m a bit nervous by his lack of communication since then, as I really do have to be back in Ohio by Tues. afternoon at the latest.  MY case manager is due at my house Wed. morning, not to mention that if I don’t show up and pay my rent I’m going to have eviction proceedings started.  It’s due today, but I have 4 days’ grace to get it there.  There’s no one to call, and no one working there since K got fired, so I really really need to get back.  Ah well, leaving here via train in a few hours and looking forward to my boys, if sad to be leaving bff again.  I do love that I’ve been able to bookend her summer this year and she got a little bonus “me” time, and I’m extra happy that I discovered Amtrak that runs from jf to bff for cheap!  Wooohoooo!

And with that, I’m off on another Mommy Adventure ™.  Wish me luck!

 

In the land of never-nod

I feel as though I have two modes of operation: either I sleep constantly and uncontrollably, or I don’t sleep at all.  There seems to be little that I can do to change this fact or alter the amount of sleep I get in any one particular night.  It’s quite frustrating I must say.  At the moment I’m at Jerkface’s place in Chicago, and all the boys are sleeping soundly and of course I’m wide awake watching old reruns of Andy Griffith on Netflix and knitting things that don’t take much in the way of concentration.  Is there no happy medium?  When I’m in sleep-mode I can (and have!) fall asleep just about anywhere or any time or in any position with any number of things going on all around me.  It’s really not a natural tired or sleepiness.  It’s an overwhelming, must-close-my-eyes-right-this-second, passing out as though I’m nodding off drunk kind of tired.  And when it hits, there is really little to do except nap it out.  Sometimes a 20 minute session of “quiet time” with eyes closed is enough to do the trick.  Sometimes, not so much.

The worrisome thing about this, of course, is the driving.  I happen to be driving quite frequently, and I worry that I’ll nod off behind the wheel (Because it really is that uncontrollable).  So far it’s only hit me once or twice while on the road, and just pulling over at a gas station or similar and walking around for 20 minutes or so was enough to break the spell.  Once I had to stop multiple times, as I thought I’d gotten past it and pulled back onto the interstate only to find myself drifting again.  I pulled off at the very next exit and walked around some more, but what if it hits me like this one of the times that I’m driving and I can’t shake it?  I’ll have to get a hotel so I can nap safely with the kids? Of course I would if that’s what I had to do, but I would much rather get to the bottom of it and FIX the stupid problem if possible.

Doesn’t seem to matter if I’ve had 2 hours or 20 hours of sleep the day before. Doesn’t seem to matter if I have 20mg or 2mg of percocet.  I always have caffeine, in the form of Mountain Dew, so it’s unlikely that’s the incriminating variable.  I don’t honestly know, but I wish I could predict it and swap it out for nights like this when I can and should be sleeping but instead sit awake at 4:30 a.m. while the rest of the house sleeps.  Tonight’s I’m pretty sure I’m onto, however, as I have bumped up the prednisone for travel and that typically makes me a jittery jumpity mess when trying to lie still.  Kind of a necessity for sleep, for the most part.  That’s not always a guarantee (sometimes I can sleep even all jacked up on mega-pred) but if I’m not sleeping and I’m all jittery and it’s been travel time? Chances are that the prednisone is at least partially to blame.

On that note, I’m here in stinky Chicago which I love to complain about, but I’m so excited that D! is gonna be here tomorrow!  WOOOHOOOOO!  I’m sure that is also adding to my jitters and adrenaline, as I’m so psyched up while I’m anxiously awaiting the D! family arrival.  We have a couple of days of hanging out and swimming and fun before she’s off for further easterly adventures and I’m back to Ohio for BUD.

Hopefully I’ll be able to stay awake through her visit tomorrow.  😀

GeoAdventures

It’s difficult to find time to write with a house full of kidlets!  I guess I’d rather be experiencing life than bemoaning the fact that I don’t have anything to do or anyone to do it with, or perhaps the lack of funds or energy or motivation or all the other things that keep me online and inside most days.  So, for that I am thankful and will just have to do chunky blogging, write it down as I have time.  So much to catch up on, but I’ll start here and go backwards and who knows when or if I’ll ever get caught up.  Such is the nature of life I suppose.

This weekend, my eldest and his girlfriend spent the weekend here and it was great to hang out and just be together for a while.  They were having some issues at my mom’s house (imagine that!) and they were ready to move out on Friday.  I really don’t have room for more people here, but would never turn them away, so I said they could stay here if they submitted an application for their own place as soon as they got here (there are empties here still) and worked on finding local jobs.  Thankfully by the time they actually *got* here, she had a job in Mom’s town and he had his stipend from school for the quarter so they were much happier than they’d been earlier in the day and were willing to stick it out there a while longer.  They only needed a break for the weekend, which I’m happy to provide.

Sunday we decided to go Geocaching, which generally typically means some sort of Mommy Adventure ™.  I don’t think we’ve ever gone geocaching without some kind of interesting detour.  My boys all know this, and prepare accordingly, but this was the girlfriend’s first experience in Mommy Adventuring.  Would you believe she actually criticized my driving?  To my face even!  That may have been instigated by the backward trip down a gravel/grass drive that was precariously close to a rather deep ditch.  And a tree.  But it was fine, until the tires didn’t catch on the gravel and we kept sliding backward despite the fact that the brakes were mashed to the floor.  And even then, it was still just a *little* scary for like, one millisecond, and then it was fine again.  Sheesh, some people have no faith.

We did find some really cool spots.  An old train tunnel, rumored to be haunted by the ghost of a brakeman who was killed there in the 1930s.  A tiny cemetery with three anonymous graves, along with an abandoned house with all the belongings still in place.  As if a family just walked away without taking a thing, and never returning.  Baby shoes, cereal, calendars on the wall… spooky, and weird.  I love a good mystery.  There were a few abandoned cars there as well, and an old trailer.  A couple of really old, really out of the way cemeteries.  Makes me wonder what the stories are of the people who are buried there.  Or alternatively, as was the case with a couple of the ones this weekend, the stories of the ones who are *not* buried there.  Like a husband and wife plot, with the husband’s name and dates of birth/death, but the wife’s plot has only her name and DOB (as if she’s still alive but it’s been waaaaaay too many years for that to be the case).  Everyone has a story, right?

Anyway, have a ton of pics to upload from the weekend as soon as I figure out where I’m going to put them.  And that was my very exciting weekend adventure, pretty much.  This week we’re on to fair food and king’s island again, and maybe some Soak City and swimming.  Then Chicago, back to Ohio, BUD visit, eye dr., KY for the kids, back to Chicago, off to NY, back to Chicago, and back to Ohio!  Whew!  I’d better go get rested up.

 

Empty House Begone!

This is the last day of peaceful quietness.  Or foreboding silence and emptiness.  Depending on how I’m viewing the world at any particular given moment.  It generally takes a few days of everyone being gone before the silence really starts to get to me and I finally cave in and turn on the TV (which then stays on until some boys come home and turn it off) for background noise.  This time, they’ve been gone entirely too long and I’m really looking forward to my full house again.  I do not know what I will do with myself if I happen to survive long enough to see them all to adulthood and find myself living alone on a regular basis.  I suppose I will travel.  A lot.

Today we’re leaving late because my daughter wants to tag along and she happens to be in northern Ohio at a basketball camp for the weekend.  Good news, they’re losing badly and as such she’ll be home early enough that it’s still reasonable to leave tonight rather than tomorrow.  Not that I was going to wait anyway.  I’ve never claimed to be reasonable when it comes to things like road trips.  I was chatting with BFF and remembering a time when my middler was a baby and I was traveling quite frequently between IL and OH.  It was a seven hour trip, door to door, and could *maybe* be done in 6.5 on a good night under the right circumstances.  However, middler was a horrible, horrible, awful road tripper as a little guy, and these trips would quite frequently fall into the 10-hour or more marathon sessions that were hell for me and the older two (who were in the ranges of 4-6 for the younger and 7-9 for the older).  Middler could escape from every car seat known to man once he started toddling, so from about 12 months on I’d be driving up the interstate at 70+ mph and BOP here’d be little middler between the seats grinning just as big as you please.  I’d stop and get him resituated and restrapped and check everything to make sure I had it all done up correctly and try my best to look all mad and mean mommy when I told him in no uncertain terms that he had to stay in his seat… and ten or so minutes later BOP there’d be his little head again.  I recall one night pulling over somewhere in KY and just crying on the side of the road, because I was out of solutions and I’d been stopping every 10 minutes for 300 miles and I was just so tired and so frustrated and he just would. not. stay. and I could not find straps that could contain him.  And he wasn’t old enough to understand, and not going was not an option (I was doing court-ordered visitation schedules and it really was not optional).  Oh, if he was behaving enough to actually stay in his seat (sometimes if the other kids would stay awake, they could make this happen for me) then he had terrible motion sickness and would inevitably puke all over everything at about the halfway point.  It was hell.  I do not know how I survived these years.

I never did find a good solution, but one strategy that I frequently employed was leaving at dusk such that the kids would fall asleep within an hour or so into the trip, and I’d arrive at the other end at 2 or 3 a.m. tired and bedraggled but at least without the drama of Middler Houdini and his Incredible Puking Extravaganza.  I really enjoyed the late night drives, and being alone, and loved the feeling of it being just the trucks and me.  I recall on occasion that the only thing I *really* hated was having to stop and pee, because 1) I felt vulnerable as a woman traveling alone with 3 small children at 1 a.m. at a truck stop in Nowhere, Indiana and 2). I hated that I had to wake 3 sleeping children just so I could run in and pee.  But I was not about to leave them unattended and sleeping in the car so what choice did I have?  It was still a better solution than driving with Houdini Pukekid, and I just tried to minimize the stops. I could do the trip with one stop on a good night, but more often it took two.

Tonight, I’ll be reminded of those trips as my daughter and I head out to Chicago kind of lateish.  Not *that* late, but it will be 2 a.m. Ohio time when we arrive, most likely.  These days, however, I’m more likely to be in bed by 10:00 p.m., and pulling an all-nighter means that I’m going to need to catch up with an all-dayer (of sleep!)  Then again, I still have frequent bouts of insomnia in which I proudly proclaim on my facebook wall that “Sleep is for wimps” and declare that I do not need it anyway.  Hopefully some of that attitude will hit me tonight, as I anticipate it will be a GREAT night for insomnia!

Speaking with my mom about this (the late traveling and such) and she insists that we all did things when we were younger that we wouldn’t dare repeat today – that common sense and the wisdom of aging instills upon us a desire to tread carefully as we realize just how fragile life really is.  I disagree, however, at least for myself.  I did in fact do all sorts of silly, inane, foolhardy, dangerous, and spontaneous things that I consider to be in the realm of “Mommy Adventures” (as my kids like to call them) but I think that I would repeat most of them today if I had the chance.  And the lungs.  YOLO and all that.  Life *is* fragile, but I tend to view that as more of a reason to live for today and enjoy and treasure the moment I’m in.  I try not to think about tomorrow too much, and maybe that means I’m in denial a bit but I’m okay with that.  I’ll let other people worry about what tomorrow will bring, I’m too busy having fun today.

With that, I’m off to Chicago and hopefully it will be a non-adventure.  My night vision is not as sharp as it once was. 🙂

Middlin with the Middler

So my middle child is having a birthday this weekend, and it’s a biggie.  He’s turning thirteen, and I shall officially be the mother to two teenagers, one adult child, and two little ones who have yet to reach double digits.  In honor of this notable occasion, I took him by himself to Kings Island today, and let him have a day of me all to himself.  They seldom get that since there are so very many of them, although I do give them each their “days” every so often.  And this was all he requested of me for his birthday, just a day of riding rides and hanging out at the amusement park, so that is what he got.  Thankfully I’ve mostly recovered from my recent pneumonia(s) and felt up to it today; we put it off three times since Monday, and I was beginning to worry I wouldn’t be able to fulfill even this simple request.  But today dawned with good breathing and a well-rested mama, so off we went!

We had a great day, and! I am happy to report that the events of last summer wherein I was unable to ride certain roller coasters and the resulting worry that I’d passed a certain point in this disease?  Seem to have been just the result of a bad day (or three).  I was honestly afraid to try to ride this year, because the end of last year had me so sad over the thought of not being able to enjoy this activity with them any more.  I didn’t want to confirm my fears, and therefore I just elected to swim, knit, sit in the shade, and ride the little rides with anyone who was interested in that sort of thing so far this summer.  I hadn’t attempted any coasters at all since that one day toward the end of last summer that I thought nearly killed me, and my daughter and I had to leave Kings Island early because I was in such bad shape.  She was equally worried, and encouraged me to wait until later in the summer to try it, to give myself a chance to fully get over the pneumonia and give myself the best shot at being able to withstand the rides.  But I’m stubborn, and I felt good, and well, anyone who knows me at all knows that if one of my babies (shut up they are too still babies) asks me for something then I’m going to do everything within my power to make sure that I give them that something.  And my middler wanted me to ride coasters with him for his thirteenth birthday, and I was bound and determined to make that happen.

I’m really glad it worked out, truly. I did rent a scooter (which may come back to bite me in the ass because I should have probably saved that for gas money to go get the other boys, but we’ll deal with that in a day or two) but considering that it was about 100 degrees in the shade today and I survived every coaster he wanted to go on? Some twice, even! I will chalk that up as a win, and was quite thrilled to text my daughter with the news that last year’s bad day was just that – a bad day.  It’s hard to know with this stupid disease, and I *know* it’s going to get worse, and I expect that it’s going to get worse, and I’m prepared for it to get worse, and yet… I’m not.  I’d like to just have things as they are for now, and not get worse for a while.  I’m okay with not being able to do everything; I can still do the things that mean the most to me, and to them, and that’s enough for now.  I am not ready to readjust and reevaluate and rethink what’s important, I just want to be for a while.

Is that too much to ask?  Maybe so.  I’ll take today for what it is and deal with tomorrow when it gets here.  Not much else I can do, and that’s how I try to approach it.  Anything else is overwhelming.

Home again, home again…

Oh wait, I’ve done that already!  Well, now I need to do it again.  I’m just coming off *another* Tower stay.  Oh joy!  I went to my follow-up appointment that Wed. morning (the 3rd of July), and didn’t make it home until 5 days or so later.  Bummer.  What a way to spend the 4th of July holiday, huh?  No fireworks or cookouts or swimming or really anything fun for me this year.  Just a lot of sick, fighting, testing (of the medical variety), and much blah.  The one redeeming positive factor is that a good friend of the imaginary (internet) variety managed to get a cheap flight from MN and came to the Tower to advocate for me and then followed me home and got me all settled.  We’d only met IRL once before, despite knowing each other online for quite some time, but it was easy and fun and I am so thankful that she was able to get here and make me feel all loved.  ❤  She is leaving at o’dark hundred in the morning, back to her real life and family, and I’m going to miss the company.  The best part is that many of my other imaginary friends kicked in a few bucks here and a few bucks there to help her offset the cost of the plane ticket and rental car, and by the time they were finished?  All those $10 and $20 donations added up to enough that her costs were pretty much covered.  *That* is even more awesome, and I have been repeatedly humbled and amazed at the goodness that still exists in the world.  Sometimes.

In not so great news, this Tower stay was the worst stay I’ve ever had.  It was most certainly NOT a restful vacation as I ordered.  Pig fuckers.  I jest, but it was by far one of the worst hospital stays I’ve ever experienced and most certainly it was the most horrible time I’ve ever had with the Tower.  My doctors are freaking amazing, and I wouldn’t switch my pulmonologist for anything in the world at this point, but the rest of the staff there left quite a bit to be desired.  I am not sure how much I want to go into right now, as it’s approaching 1 a.m. and I’m ready for a couple of hours sleep before trying to see my friend off (ha, what are the odds I’m going to wake up…) so let me see if I can summarize a touch:

First day pretty good, met with docs, felt super important as my pulmo finished up clinic hours and came over and performed my second bronchoscopy in as many weeks himself.  After 5 on a holiday, the city was preparing for their big fireworks display.  I had the nurses and respiratory therapists tell me (repeatedly) that I should feel very special indeed, as they had several bronchs to do the following day anyway and it would have been no big deal to keep me not eating and drinking all night (I’d already not eaten all day because sick) and do mine with the rest of them.  The fact that he finished clinic hours and THEN came over and did it himself (I didn’t even get any students this time!) speaks volumes, and I feel like he’s doing everything right in terms of my care.  Slept a lot that night until pain meds wore off, and then was hurty and unable to get comfy until pulmos rounded the following morning and changed up my pain meds and got that under control.  And that is where the trouble began.

That day, day 2, my pain was well controlled and I was on a zillion antibiotics because they didn’t know what they were dealing with.  The trouble began when I observed my RN diverting (STEALING let’s call it what it is shall we) dilaudid right in front of me.  It was very sneaky, and requires a lengthy explanation/description, so I will forego that for now and just say that I am now 100% positive that’s what was going on.  I got my meds, she diverted an extra bottle.  At some point she also brought my percocet already out of the package, which is a no-no – they are supposed to open the blister pack in front of the patient so you can be sure you’re getting what you’re supposed to get.  Covers her ass and makes patients happy.  She brought mine in a ziploc baggie.  I didn’t question at the time, and didn’t really make much note of it until my pain was way out of control.  I’m on a lot of narcotics at home, so I tend to notice when a dose is missed.

Woke up on day 3 to a shower in my room – water just pouring down from the ceiling as if I were standing in a storm.  Dripping and running around/down the TV, the wall, splashing all over my bed, huge puddles on the floor.  It was a great way to start the day.  It wasn’t even shift change, so it was well before 7 a.m.  Luckily, they had an empty room next door that was simply missing a bed, so they managed to just wheel my bed and belongings from one room to the next.  I fault no one for this, it’s just one of those things that happens, and really would have just laughed it off if it weren’t just another thing on the pile of shit that was this stay.  In fact, I was asking people for umbrellas and telling the PCA that I wouldn’t’ be needing a shower that day since I’d already had one, and similar cracks.  It was funny.  Or I’m easily entertained.  Maybe both.

But then they moved me off that floor, which is good as that floor is the step-down unit that requires constant heart monitoring.  Moving floors meant that my HR had finally stabilized enough that I could get off the tethered monitor and put instead on a remote box so I could walk around and such and see what my heart did then.  Bad news! My nurse informed me that he was leaving at 3:00 p.m. – he dropped me on the new floor at 3:10 p.m.  I don’t think he ever gave report, or if he did, he gave it to someone who didn’t hear.  by 4:30 I was due for more pain meds, and hit my call light, and they responded to me as such, “How can I help you, Mr. Moore?”  Well, I am neither a mister nor a Moore, so this was a bit alarming.  Still, I laughed.  Until my PCA from *that* floor decided to come in without precautions… oh wait, need to back up.

I knew this was bound to get lengthy.

I tested positive for C. diff. on day 2, and as such was on contact precautions.  Meaning no one in my room without gowning up, and I had to have my own thermometer, BP cuff, pulse oximeter, etc., for monitoring because it’s quite contagious and not something you want to be spreading around the hospital.  So my PCA on the new floor waltzes right into my room without so much as a hint of a gown, and also toting the community vital sign monitoring equipment.  Which she intended to use on me.  And then take to the next patient.  *shudder*  I was luckily with it enough to tell her to go check my precautions situation before she entered, and she could not have been more apologetic and thankful.  *She* was in shock that she’d almost done that, but it was not her fault at all.  There should have been a notice on my door and gowns just outside, readily available.  Someone dropped th ball big time.

At any rate, it took forever from there to get the crappy nurse from hell (who happens to share a name with my mother so I will never forget it) who would not push dilaudid at all and told me how I did not seem to *need* such strong pain medications because I was smiling and smiling people are not in pain.  Nevermind that the only reason I was not in pain was more than likely due to the fact that I’d had dilaudid and percocet in rotation for the previous 24 hours or so.  I did eventually get my meds, but she went and got another nurse to push them (twice).  She was okay with the percocet, and I thought maybe it was an IV situation (like she wasn’t allowed to give IV meds or something?) but she hung my IV antibiotics so who knows.  What I do know is that I had a miserable time and had to fight with her for meds every single time, and I had her for two days straight.

I fought with more nurses about the pain situation, and made them call my doc for clarification and confirmation.  I guess one cannot have pain meds without a healthy dose of shame on the side.  As if I do not know that I am on strong narcotics.  I have said before and will say again, however many times it takes – when every single breath hurts, I honestly do not want to take the next one.  If I could simply stop breathing at that point, I most likely would.  It hurts *that* much.  And that is not the point to come and argue with me about whether or not you think my narcotic use is too much.  Especially if you are not my doctor.  And extra especially when I have FOUR doctors on my case who all agree (I had 2 pulmos, the gen med admitting doc, and an infectious disease doc this time).

There was so much more that went wrong, but all of that could have been managed with my pain under control.  I am such a happier person when it doesn’t hurt to breathe, imagine that.  I also tend to heal quicker, as I’m more willing to let a big ole cough come through (rather than stifle it down which is what I did for several days) or do the deep breathing that is required to get over this pneumonia yet also exceedingly painful without strong pain meds.  Yes, I realize people abuse them.  Were I med-seeking I should hope that I would choose something other than a lung disease to fake and I would probably have much better access.

Anyway, the aforementioned friend from MN (hi S!) helped me gather all my notes from this visit and compile them in a coherent document so that when my case manager comes tomorrow i can begin the Official Complaint process.  If every Tower visit were like this I would probably not even bother to go in, and that is not a good thing for my condition.  But I don’t have that amount of fight left in me any more, I just don’t.  Not even on a good day, let alone when I’m in the midst of pneumonia.

Oh, and by the way, my bronch grew something this time – mycoplasma pneumonia.  That’s good news, as it responds quite positively to azythromycin and so I am working on another 14-day course of that.  I feel so much more like myself this time around, and am pretty confident we got it this time.  I’m still without my little fellas (and missing them sooooo much!!) so I can be lazy and restful all week and hopefully do a much better job than I did last week.  No real plans other than a follow up with a gen med doc that I’ve not yet met on Friday.  Said doc works in the same practice as my former PCP who just left and new PCP that I haven’t seen yet.  Guess that was the doc who had appts available when I needed to be seen, so that’s who I’m seeing.  I’m not too worried about it, I will probably only see him/her this one time and don’t need anything other than a quick check and listen to make sure things are progressing as they should.

I’m still sure there’s so much more to the story, but that’s all you get for now.  You’re no doubt as tired of reading as I am of typing, so I’m off to rest for a while again.  Still kickin’.