Saturday, July 7, 2018

Still Trying To Pull It Together

Medically Speaking

It turned out I did have a UTI.  I ended up going to the Saturday clinic at my GP's office.  The doctor doing clinic that day was hesitant to put me on an antibiotic so soon after 2 months on vancomycin, the body builds a resistance.  Lucky for me, it was a very mild infection.  Not the full-on assault on my bladder as UTI's in the past have done.  I got some stuff that turns the pee orange and some stuff that turns it blue.  I was anxious to see what I was going to get.  I am happy to report that apparently orange is the dominant color, albeit there was a small hint of light purple.  Like the color your tongue turns after you eat the entire package of Fun Dip.  Remember those?  Can you still get that?

The cough.  I had wondered for some time when the cough would come.  When it did, there was no warning.  No slow leading-up-to.  Just whammo!  Its here.  I was eating dinner a couple nights ago, and when I swallowed a bit of food, it set off a coughing fit.  It's not constant.  But it's to the point now that at times I have to mentally focus on not coughing, the urge is always there.  Most times a cough or two will clear it.  Sometimes not.  Sometimes the "tickle" is like a stab in the throat, and Its ON! Now!  I usually have to head to the bathroom because 1) I have an old bladder (I'll leave the rest to your imagination) and 2) the gag reflex doesn't take long to kick in and I'll need something to hurl in.  So far the fits only last about 5 minutes.  At the end, the cough gets "wet" and phlegm comes up and its all over.  Maybe a few more coughs for a few minutes and its done.  Between the coughing fits, I cough.  Not a lot.  But enough.  Its consistent that's for sure.  Enough that my chest stays sore now from coughing.  And I've always got a slight headache.  Downer.

The home draining is working like a charm!  We're getting about 200ml every 3 days.  I've given up hope that the lung will ever stop filling.  Its just not going to happen.  But the equipment is functioning, and that means everything.  A non-functioning tube is not a good thing, as I found out.  The hard way.

I've run a bit of fever a few times.  One time it reached a full 100f.  I've continued to attempt to taper off the prednisone.  I don't seem to be getting as far this time.  I'm stuck around 16mg.  Lower than that and the fever comes, the chest gets tight, and breathing is shallow.  I'm going to continue to try, but I'm afraid I've reached my limit this time.  Another downer.  I wonder what doctor wonderful will have to say about that.

Still No Income

Last time I got paid was 6 June.  I'm up to my eyeballs in medical bills, and still no income.  ABC says my package was transmitted to OPM on 13 June.  OPM says they didn't receive it until yesterday.  YESTERDAY! So one of two things is true.  Either ABC lied and it wasn't transmitted until yesterday, or!  It was transmitted to OPM on the 13th, and it sat in a que for 3 weeks until somebody got around to it.  I'm leaning toward the latter.  I ran out of available cash last week.  I exhausted my credit card for gas and groceries.  I'm down to about $38 in a small savings I have in town.  Within the next week, utilities will be due, my loan payment was due yesterday, I've left just enough on the credit card to cover Netflix that will auto draft this week, and the wireless bill because I'm on a contract for that and they'll sue me.  My house insurance will auto draft on the 10th and I'll be in the hole. My cell phone bill of $40 is due next week.  I called OPM and that's how I found out that they had only just received my package (yesterday morning).  That's why I've not received my interim payment.  I expect that, now, sometime next week.  Fingers crossed.  I started looking for it last Monday, so you can imagine my frustration by Friday (yesterday).  So this guy says that my piddly pension should start first week in August.  Also, the paper work that I had to have both our signatures notorized for the monthly payout from my investment account, the Mr. forgot to date his and neither I nor the notary caught it.  On page 4, I forgot to indicate *100%* in a spot they needed it.  These two things stopped the entire wagon-train.  Got Pam to print them out for me and got them resigned and renotorized and refaxed.  On a good note, I spoke with the lady at TSP and she said my monthly should start up first of August too.  So it appears everything will come at one time.  Its going to be a rough road financially.  Oh!  I owe roughly $1,800 in medical bills, my hospital bill alone before insurance, was $170,000.  A huge stack of them sitting on my dressing table.  Just sitting there.  Ok I'm lying...they're scattered across the floor in my bed room.  It is what it is.  I went to the hospital and spoke with a financial counselor there.  I can't start a payment plan until I make a payment.  I have no income at the moment.  I started to cry, right there in her office.  Blabbering about how much this illness has cost me, and I'm broke blah blah blah.  Bless her heart.  She looked at me and said "honey, I've been right there.  I was up in here last year for 3 weeks! I almost lost every thing.  And my boyfriend ended up losing his car so he could pay my bills and take care of my son. Don't you worry about these bills!  Its gonna be ok"  and she got up and came around and hugged me!  What a sweet sweet spirit.  I hope she gets blessed real good.

Where I Am Mentally

Not in a very good place, that's for sure.  I'm quite sure that part of what is wrong with me is that I'm just completely sleep deprived.  I dread the night time now.  Rare is the night I sleep all night.  No actually, it doesn't happen anymore.  If I take 2 Tylenol pm and 2 benedryl and bed down around midnight, I will still have to get up to pee at least once.  And now factor in the nigh-time coughing fits.  Some nights its two fits, but at least one.  The restless-leg is a nightly monster I wrestle with.  The legs tag-team each other all night.  At least I can say, so far, I've not had both at the same time.  As it comes on, the leg that is on duty, begins to ache.  And the foot of said leg, becomes extreamly "sensitive" to the point that its almost painful to touch it.  Aside...I wonder if this has anything to do with the mystery of why the skin on my feet, almost over night, went from soft to alligator...but anyway.  So yeah, one leg for an hour or so, then the other one, then they switch back.  All night.  As you see, going to bed doesn't mean what it used to.  I can catch a nap during the day, thankfully.

I'm more depressed than I've ever been.  I've lost hope.  I see no future.  No getting better.  Nothing but these "four walls" and alone.  Yes, I have a husband.  But I really don't want to go into all of it.  I'll just say there are issues.  I would never disrespect him in that way.  And its true that there are always 2 sides to every story.  But I don't have a lot of emotional support.  My family, I don't hear from them much.  My dad is 83 now, he doesn't get around too well.  My 4 brothers have their own lives (I'm the baby, and the only girl).  I have 3 friend-girls of whom I am so grateful to have!  They are a blessing, and have been there for me a lot.  Sam would indulge my love for Vera Bradley products, and take me to get egg drop soup at lunch time when my tummy was ikky.  Pam.  I have a connection with Pam that I have with no one else.  Pam understands me because she came from a very similar situation that I'm in.  I can talk to her about things I can't talk to anybody else about.  And Leslie.  My true heart friend.  Who went out and bought me underware on her lunch break the day the doctor had decided I was not going home just yet.  I cried and cried, and then I called Leslie.  I wasn't going to get to go home, I cried!  "And I'm out of clean underware!"  She took her lunch break and went to the Balli Hanes store at the outlet mall and bought me 12 pairs of cotton underware!  God bless her!!  She also brought me a bag of Halo oranges.  Leslie is benevolent, and has a heart the size of the moon.  She also crochets.  I help her out with patterns because I've been pushing the hook since I was a kid in the 70's.  She says she's my "little grasshopper" (say that like Mr. Miaggi).  But my deepest troubles I can't talk to her about.  Leslie never lived a life like I did.  She can't relate.  I don't want to say her life was "sheltered" but compared to what I grew up in, yeah she was.  I don't mean that in a bad way.  Matter of fact, I envy her that.  She means the world to me.  But I know there are things I can't talk to her about.  Nor Sam.  Sam is the mother of the rest of us.  Unless you want her to attempt to "fix" you, keep your troubles to yourself.  She swoops in and fires solutions at you like a machine gun.  "did you think of trying this..." "what about...…"  "I think you should do this..."  That's my boo.  I love her to pieces.  She's a beautiful woman inside and out.  But only Pam can I *really* talk to, about the deep stuff.  

I say all that to say this.  I don't even feel like I can confide in Pam.  Not that she wouldn't listen, but what can any of them do?  All they can do is listen, and sometimes that's all I need anyway.  But there are no real solutions here.  And honestly, I'm getting a little scared because I have no clue what is next.  I believe part of my problem here is the loss of the anti-anxiety meds.  Everything it suppressed has come back.  The terrible feelings of anxiousness, the panic attacks, the constant worry that is so consuming it some times puts me in the chair all day semi-catatonic, without speaking a word.  The constant inner turmoil.  Debilitating.  But I'm off them, and I'd like to stay that way.  I'm hoping I can.  That goes for the pain meds too.  I'm off them now.  But how long will it take before I can't stand the pain. My pain level doubled when I stopped taking them.  I never realized just how much pain the meds were taking care of.  I want to go as far as I can.  I'm afraid the time is coming I will have to take the pain meds again.  That's assuming I can get them now.  Its getting to the point that only cancer patients get good pain meds.  Not to dis our brothers and sisters in sickness battling that.  But cancer isn't the only thing that kills, and its not the only disease that hurts.  I've said it before, I'll say it again.  I'd rather be hooked, than hurt.

I feel my best when I first get up.   I've been sleeping until nearly noon for days due to the not sleeping all night.  Once the legs settle and the cough stops, I drift off.  I'm at my best the first six hours or so.  By 5 or 6, I begin to head south.  Wednesday night was a good one.  I had to take an Aleve and extra pred to achieve it.  But I had a nice evening.  It was wonderful.  I lost my beloved Aleve after the blood clots incident.  The blood thinner keeps me from it now.  I've been thinking about getting some St. Johns Wart next time I have money.  I've heard it can help with depression and anxiety.  I have never taken it.

Sometimes I'm so down and depressed, I do think about ending this.  Sometimes I'm so tired of fighting, so tired of losing.  So far I've won some major battles.  But I know I can't win the war.  Its like a battle till the last man is standing, your man.   Dying doesn't scare me, I'm confident I'm on the right bus.  But the process of dying scares the hell out of me.  I don't want to suffer, who does?  I don't believe we're in control of that.  Or at least our control is limited.  I believe there are just some things we have no say in.  The truth of the matter is, I'm too chicken shit to do anything.  That and I just don't believe in playing God.  All our days are numbered.  And we're not the ones who determine what our number is.  That's what I believe anyway.  

Only God knows how much time I have.  But the way this cough came on, the way my lungs feel, the ground I lost with this last infection.  I can't help but think I'm coming down to the wire, the station is way off in the distance.  But I can see it, just.  I've been re-reading the blog Diary Of A Dying Mom,  just to try and gain some insight into this cough.  She died in 2008 from Scleroderma that affected her lungs.  Scleroderma is autoimmune.  The lung issues are the same as with RA.  She talks about how her coughing fits lasted so long, and left her on the floor covered in sweat, and completely spent.  A cough so bad, she was on narcotics to help control it, but nothing completely silenced it. She talked of how sometimes she couldn't even talk because it would set it off.  I know the feeling.  Or at least I'm learning it.  I'm not where she was yet.  I just wonder though, how long it will take to get there.  I keep thinking I'm going to find something she said about it that included how she might have managed it on her own.  Some tips or something.  I can't find anything.  Matter of fact, I haven't found much at all even on the internets.  All I get is articles and sites describing the medical part, but nothing on how to help manage it yourself.  Because of that, I'm going to talk about it here.  Someday somebody might be looking for the same thing as me.  Maybe they'll stumble here.  If I can do anything to help somebody else, then it was worth it.  Even it its just moral support.  The way my lungs feel now, 8 months...a year more...maybe.  I just know how I feel now.  I know the statistics and the numbers.

Another Project Or Two

I've been thinking a lot about my life.  Where I came from.  What made me who I am.  I remember that scene from Bridges of Madison County where the kids are reading the journal at the beginning of the movie.  Meryl Streep is saying how it becomes more important as we inch closer to our end, to be known.  Known for who we really were.  That scene has always resonated with me.  I started thinking how very little my children, and even my husband to a great extent, know so little of my story.  He knows a great deal, Pam knows a great deal.  But nobody knows it all.  Once my mom passed away anyway.  I was thinking about doing some essays about my life.  My young life here in town, my teen years in Corpus Christi (it was the best of times, it was the worst of times).  There's so much to tell.  There are some things I will take with me to my grave, things that I will never share because it would serve no purpose.  I fell in love the first time at 16 and was engaged for a short time.  My children have heard me mention it a few times, but they don't know the whole story, they know nothing about him.  My youngest met him briefly when he was 5, but that's the extent of it.  It was a great love story that ended badly.  I have many memories of my life before I got married, that I want to tell.  To share with them, because its my plan to leave the address to this blog in their letters.  So they can come here and read.  I want to record my memories while I still can.  Time is already beginning to steal small details.  Bare naked truth.

Another project I want to start are afghans.  And a bunch of them.  I learned to crochet in 1978 when I was 11 years old.  I took to it like a duck to water.  It just came so naturally.  I've always been "crafty" like that.  I even taught myself how to knit from watching youtube video's 5 years ago.  I was telling the hubs just this afternoon that I had reached STABLE.  He asked what's that.  I said its a term used in the yarn world.  An acronym that stands for Stash Acquisition Beyond Life Expetancy.  I have enough yarn to blanket the town.  There are still a few on my list that are due to get a blanket before I croak.  I just feel I *really* need to get going before I run out of time.  Here's one I've picked out to start.

Please note the web address on the picture to the designers website.
This is not my picture.

Yarn deliciousness!  It must be said, I have never found a pattern I couldn't do.  Till now.  I'm actually having to practice this!!  This is extream crochet, and requires some seriously fancy hook work.  Its not relaxing "tv crochet".   But I will do it!  I can do the stitches, I've just not got a lot experience in this new "surface crochet" that's all over the craft world these days.  It will just take some practice.  I'll post pictures as I get along.  I just need to keep busy, some how, to help quiet the voices that constantly remind me how dire my finances are, and how uncertain my future is.

Since I've been thinking about doing this life-story thing, I've been going back to the music of my younger years.  They really make the memories flood over me.  And I've even rediscovered some that were my favorites that I'd forgotten about.  Like the one below that I'm leaving you with today.  I was a newly married bride in 1987 when I first heard this one, 20 years old.  I stumbled across it a few days ago, and cried.  So many wonderful memories of being newly married.  I've probably listened to it a hundred times since.  Music tends to take me back because radio and music have always been a big part of my life.  When I was a teen, I slept with the radio on.  I can hear an old tune, and immediately I'm remembering something that I relate the song to.  "oh I remember the first time I heard this, I was at a party blah blah..."  Its a way I remember things.  I want to add pictures too.  I'll have to be thinking about this over the next few days.

Its past midnight now, and my body is so sleepy.  So far, the legs are quiet.  Is it possible?  Naaa, probably not.  I'm closing now.  Enjoy the song.  I sure do!

Tuesday, June 19, 2018

Hitting Bottom

It has been a while.  Honestly, I've just been too stressed to form any kind of blog post worth reading.  A lot has happened.  Well, a lot to me.

From A Medical Stand-Point

I stated in my last post that I still had the port, and was hoping to have it pulled the following Thursday.  Didn't happen.  Dr. O said two more weeks. (again, everybody does call him "Dr. O" because his name takes practice.  I asked his nurse where he was from, I was thinking South Africa.  Nope.  Nigerian.  He's a really really nice doctor)  So I endured two more weeks of IV antibiotics.  Two weeks later, the port was removed by my home nurse, Amy, and Dr. O prescribed an oral antibiotic, Doxycycline, that I was to take for two weeks.  People....absolute torture.  Torture do you hear me??  The main side effects are nausea, diarrhea, and vomiting.  Of course, you KNOW I had all three.  The Medformin already has the same side effects, just not nearly as bad.  But add in the doxy, and its a double-whammy.  After 6 days on the doxycycline, I out-right refused to take it anymore.  It got so bad, I cried every time it was time to take it.  I'd just stare at the bottle for several hours and talk myself into taking it.  Finally I'd had enough.  Enough all-night'ers in the bathroom on the throne, white-knuckled and crying from the pain of just going.  It was so bad, I began to bleed.  That's when I decided enough was enough.  I called the next morning to report that I was refusing to take it, and that if he wanted to put me back on the port and vancomycin, I was fine with that.  The nurse said, "Ok stop taking it and when Dr. O gets back in the office tomorrow we'll see what he says"  what I didn't say out loud at that point was that I was not calling to get permission, the decision had already been made.  I was just calling to let them know incase he wanted to go a different route.  No way in hell was I going to take demon drug again.  EVER.  So I am no longer on any antibiotics at this time.  And I think I may have a UTI.  Lovely.  Matter of fact, Dr. O released me last week and said I didn't have to come back unless I needed him.  A good thing.  I have also developed a dry cough.  It keeps me up at night sometimes.  And I can't seem to shake it.

It Gets Better

Yes, that is a sarcastic title.  ABC (Army Benefits Center) called last week to give me my numbers.  How much my pension would be each month blah blah.  And then the whole world spun off its axis.  Its so bad, I can barely type it.  Here goes.  My monthly pension is $940 a month (!!).  Minus $580 a month health insurance, $20 a month life insurance, and taxes on the rest.  What is left over, isn't even enough to buy meds and medical supplies, much less pay utilities.  I knew it was going to be tight, that we'd have to count every penny.  I didn't know we'd be destitute, and at the mercy of family.  Bottom line, I'm going from $50,000 a year, to around $12,000.  below the poverty level.  I'll have to get food stamps, no choice.  Thank God the mortgage is paid off, otherwise we'd be sleeping in our car soon.  We may not have power and water, but at least we'll have a place to sleep.  That all being said.  I do have an investment account (think: 401K in the civilian world).  But I lost so much during the Obama administration (he was a super president, eh? SMH) when the market was on the skids so often and for so long, I was never really able to recover completely.  I gained so much of back after this last election when the market when sky high.  But still, I only have enough to last about two years.  And that's if I only get my monthly payout from that to be very low.  With that, coupled with the $300 or so from my pension, after taxes, we'll get by.  Barely.  And we will still need help from family now and then.  Again though, that money will only last about 2 years.  So I will either have to get another job, regardless that the reason I retired in the first place is because I'm sick and could no longer do it.  Or I have to hire a lawyer to force OPM to give me what I deserve anyway.  I'm terminal...and they basically said I'm not sick enough for the disability part.  I can, also, apply for SSDI.  But we all know how long that can take, sometimes years, and I'll probably have to get an attorney to do that too.  my other option is to just not worry about it, because hey!  I probably won't still be here in 2 years.  Seems everything I put my hands on the past year, has turned to crap.  Seriously, I thought since what I have is considered terminal, I figured I was a shoe-in for the disability part.  And OPM says I didn't prove I'm sick enough.  But that crazy &*#& I use to work with, got approval for flippin migraine headaches.  And you can check her out on FB all the time "'s me and my drink whoopin it up in new orleans. woot woot!"  I'm exaggerating, but it is true.  Nothing I've done so far in all this retirement BS, has worked out for me.  Even the drain tube, in which I had so much hope and it was going to allow me to continue to work for a while yet, is iffy at best.  And is the reason I went in the hospital in April.  I look at nothing now, with positive eyes.  Nothing is guaranteed.  Absolutely nothing.  31 years of government service.  5 of those on active duty, in uniform.  And basically all I get is health insurance and a boot out the door.  But not to poo poo the insurance.  I need it.  But I'm paying for it.  what hurt me the most in the money part, is my age.  I wasn't eligible for real retirement, not old enough.  I didn't think it would hurt me that much financially.  Therein is the problem.  Nothing is guaranteed.  I should have kept working.  I miss work.  Didn't think I would....but I do.

I feel like I've got the whole world on my shoulders.  I don't think I've ever been so depressed.  Well there was one time, long time ago when the Mr. and I separated for about a year, and I was so stressed and depressed, I lost 35 pounds in 6 weeks, all my eyelashes fell out, a lot of my hair fell out too, and I had to force myself to eat and could only manage it about every other day.  It was a very dark time.  But I was young and healthy and new that whatever happened, I had a good job and a future in front of me.  I have none of that now.  And I'd rather sleep in my car than burden family with all this.

Sunday, May 27, 2018

Its Official - UPDATED

Friday, 25 May 2018, I was officially retired.  There are photo's, and soon as I get them I will share.  But its done and dusted.  I have already been off work for 7 weeks, so I've had time to get used to it.  I'm not used to it.  But I am slowly, very slowly, beginning to accept it and even begin to think about things I can do now.  First thing I'm going to do soon as I can (tomorrow?) is talk to Judy at my LYS (that's "Local Yarn Shop" for you non crafters) and see about teaching crochet classes.  I heard from my BFF Leslie, that Judy has been trying to teach herself to crochet (she's a knit-only crafter, while I am bi-crafted....I knit and crochet) and not having a good go at it.  I could mind the store for her when she's gone so she doesn't have to close to go to the doctor.  Its a very small store.

Speaking of LYS, for a retirement gift, Leslie gave me a $100 gift certificate to Fabs!  My LYS is called Fabs and More and the Whole 9 Yarns.  $100!!  Now just so ya'll know, this ain't Hobby Lobby or Joannes or Michaels.   LYS's generally do not sell those yarns, only what we call "the good stuff".  The fine wool blends, Egyptian cottons, mmmmm.  Malabrigo I heart you!!

I still have the port in my arm.  Fingers crossed, I am hoping Dr. O is going to give me the all clear this week on Thursday and remove it.  I hope.  I'm sick to death of this thing hanging out of me.  If I can just get rid of this, then I'll be back to what I had before this all happened, and just have the drain catheter to deal with and that's easy because it stays covered.

How am I feeling?  Its hard to describe.  I am generally at my best first thing in the morning.  By 5 or 6 I'm pretty much whipped out.  I feel pretty good, but it is obvious to me I am not what I was before.  Dr. G said that this is the way it is, every time something happens I'll lose ground I can't get back.  I tire easy.  A trip to Walmart for groceries, and its to the chair for the rest of the day.  But so what?  Its not like I gotta get up and go to work.

That is still so surreal.  I'm unemployed.  Huh.  I haven't been unemployed in over 30 years.  The scary part?  I get one more full paycheck, then its a wait to see how long it will take OPM to process me and start my pension.  Yes, once again, I'm at the mercy of OPM.  Regular retirement is a lot different than disability-retirement.  They don't have to go before a board for review.  They just process you.  I am considering re-applying for disability from them since my illness is clearly the reason I've had to retire early.  I still had 5 years to go before I was eligible.  Remember in the last post, I explained the VERA, the early retirement.  And God bless my people up there, they donated enough hours to me so that this pay period that ended Friday, I had enough leave hours to get that one last full paycheck.

The party/ceremony was really nice.  Lots of food, so many tears.  Many many tears.  Leslie kept telling me "everybody loves you!!".  Leslie was the lead on organizing my party.  She said once the e-memo went out to the building about my party, she said her phone never stopped ringing with people donating money for a gift and signing up to bring a dish.  I ended up with an envelope stuffed with cash to the tune of $450!  And boy did that come in handy!  Leaving all those wonderful people is the hardest part.  But I did.  The last thing I did before I walked out the door was turn my CAC card in to Security.  And I said good bye to the guards at the front door, and drove out the last time.

Me and the Mr. are doing ok.  There are issues that were there always, and that's ok.  We still bicker constantly, that's ok.  :)  But so far so good.  We've changed up a few things.  For instance, for the last year or longer, we would be in our separate spaces when I was home.  Now, we've moved back to the living-room again.  He hooked up the Rocu in there and now we spend all day there, on lap tops watching Pluto tv or youtube.  I nap a lot.

Still dealing with glucose issues.  I have pretty much stopped drinking soda's.  Ok, I said "pretty much".  I don't blow through a 12-pack in a weekend any more.  I like one in the morning, or at night with my dinner.  and that's it.  No more 40oz "super size" soda's from the Circle K anymore.  And at .85 cents, bad health is cheap!  Speaking of....I was at the Walmart the other day and saw "Grass Fed Beef", and it was way more expensive than the other "beef".  Huh?  So what the hell are the feeding the other unfortunate cows?  Because I thought, and correct me if I'm wrong, but I thought grass is what they ate anyway!  I know I'm not the sharpest tack on the bulletin board, but dang.  And they charge more for it!!  That makes zero sense and seems to me a cleaver marketing ploy to jack up the price for allowing cows to do what they've always grass.  I'm just sayin.....

I don't think I ever said what my official diagnosis was.  I had Bacteremia.  Infected blood from infected effusion fluid.  The cavety around my lung that always has fluid, was filled with pus.  Surgeon said when he pulled the old tube out, pus ran out after it.  That's why I'm still on Vancomycin, 8 weeks this week.  5 days later I had a second procedure where in the surgeon went back in and "washed" me with 5 litres of saline.  I was a sick pup people.  A sick pup.

So yeah, I'm a pensioner now.  At 50.  We'll be poor as church mice, but at least I don't have all that stress anymore.  Peace-of-mind is priceless people.

Till next time, ya'll be sweet!

Tuesday, May 15, 2018

Home Nurses And Stuff Like That

Home Nurses

I have home-nurses who come twice a week to draw blood for labs, change the cover on my port, take my vitals, and quiz me about bodily functions.  They are great, really.  I can not complain.  As you know, the Mr. has always drained my lung.  He's good, and I trust him.  See, he's an OCD personality, so he's thorough.  When it comes to medical stuff, I'm down with that.

Back in December when I first got the drain tube, the home-nurse agency we selected trained him, observed him a couple of times, and signed off on it.  This time, we found out that, that particular agency doesn't handle home IV antibiotics, so we had to chose another.  The policy of the one we chose is that their nurses always do Pleurex drains, because its an opening into the body and keeping things sterile and clean are the #1 priority, and for liability reasons and blah blah blah.  So we kind of went back and forth a bit and Pam, the nurse supervior, conceded to come over the next day and "observe" him doing it.  Cuts down on my ultimate costs, because its less home-visits.  I'm not on Medicare or Medicaid, I have private insurance, so no free ride for me.  Anyway, the moral of the story is the new tube is working like a charm!  happy happy happy!  And Pam was so impressed with the Mr's technique, she commented that he did it better than even some of her nurses.  :)  He grinned from ear to ear, and he should be proud of himself.  I'm proud of him.

I have to see Dr. O tomorrow (everybody really does call him "Dr. O" because I think he's from South Africa or Kenya, and has a name that is very hard to pronounce.).  He's the infectious disease specialist here, and he's monitoring my antibiotics.  I'm in week six (that's counting the two weeks in hospital) of the treatment, and if he gives me a clean bill tomorrow, then I can get the port removed.  Yay!!!

Constant Road Blocks

Its always something ain't it?  As of tomorrow, I will be completely out of leave time.  I get one more full paycheck, and that's it until my pension kicks in.  How long will that take?  Only God knows, because this IS the gov't, and this is OPM we're talking about.  I've heard some say it kicked right on time the next month, and some say it took 2 or 3 months before it started.  And lets remember, it took OPM 9 months to get to my Disability Retirement package, only to respond that I had not proven I'm sick enough for the disability part.  That's why I had to do what I did and just take the early retirement.  That being said, there is the volunteer leave program, wherein other employees with scads of leave on the books (like I used to have), and they can donate hours to me.  The more hours I get, the less days of leave-without-pay I'll have to eat.  So this program requires a letter from the doctor, stating diagnosis, prognosis yadda yadda.  So I got that.  Took it to personnel....and they promptly rejected it (this was a week ago today) because OPM requires a start and end date for treatment.  *cue deer in headlights...crickets chirping*  My letter didn't state that.  Fresh hell for that day.  This meant I would have to take the letter BACK to the doctors office and ask J-the-nurse to fix it.  Doctor G and J the nurse are off on Wednesdays, so it was Thursday before I could get the letter back.  I sat down and wrote J a nice little note apologizing for having to return it and taking up her time blah blah blah.  Today is Tuesday....still no letter.  And I'm out of leave tomorrow.  effing wonderful.  You know, people really don't have a clue nor a care what some are going through....its all about them and their world and what's happening to them.  Forget the fact that my insurance and my self, have paid literally thousands and thousands of dollars to them over the last two decades.  Ok, enough.  So I have an appointment this afternoon with Dr. C the surgeon.  I'll get Trisha his nurse to do one for me.  *sigh*  I'm not going to lie.  Retirement is scaring the hell out of me.  I've worked full time since I was 17.  Its like a death.  And our standard of living is going to diminish greatly.  Most of my monthly pension is going to go to health insurance, and taxes.  We'll be poor as church mice.  That's one of the sad parts.  we finally got the mortgage paid off and finally had enough each month to pay the bills, feed us, and plenty left over to play with.  All will be gone.  We'll manage.  I'm a worrier.  Retirement party is 24 May.  I'll post pictures.

Blood Sugar

While I was in the hospital, it was discovered that I have high sugar (I'm sweet like that :), and was given insulin while inpatient.  When I got home and saw Dr. G the next week, I had my A1C checked.  Diabetic is a score of 7, mine is 10.  10!!!  shit its always something.  I've been told the roids will make sugar spike and the antibiotics will too.  I'm tapering off the roids again and hopefully I'll be off the IV by the end of the week.  That being said, I had to buy a glucose meter, and I'm watching my sugar intake.  (Dr. Pepper!!  WAAAA!!!  I miss you *sniff sniff*).  But before that started, the day after I bought the meter, I lost it.  We turned this place up side down, twice.  No meter.  3 days later, I found it in my purse....the purse I looked in 3 times.  Meds or age?  You decide.  Apparently the Mr. IS right...I'm dumb as dirt and clearly half crazy.  *sigh again*  On a good note, just as I was about to walk out the door to buy a new meter (thankful they're not that expensive....its the strips that are outrageously, ridiculously expensive.  $40 for 25 strips I shit you not), I grabbed my purse to get my wallet, and whaddayaknow?  There's the meter.  Just glad I found it.  shake-my-head.

My Mental State and Stability

Some days I'm fine, some days I'm not.  I still cry a lot.  A lot.  I cry because I'm tired of being sick.  I cry when I think about all the things that this disease has robbed me off, and not just my health.  I cry when I think that this latest episode is partly my fault because, once again (yes, I've learned this time), what I thought was just a bad flare...was not a bad flare.  I cry because all the statistics say I'm only going to get worse, never better.  Every time something happens, I loose ground that I don't get back.  And then I dry my eyes (which is not always easy with the RA in them too), and move on.  Whining and crying is not going to change a dang thing.  It is what it is.

More Future Possible Changes

So for now, I'm going to leave you with a song.  I listen to it almost everyday.  If you've never heard of Gregory Porter, please check him out.  I've not found one tune he sings, that isn't off the charts.  An incredible voice.  This one is my favorite.  I believe its an old Nat King Cole remake.  It makes me smile.  :)

See you soon.

PS.  I just want to say that I mostly especially know how very blessed I am.  There were so many things that could have gone wrong, that didn't.  Statistically speaking, I should not have survived this. And I did.  Just like the Pulmonary Embolism a year ago.  I did.  I survived.  I am thankful and grateful to the One who gives me life.

PSS (or is it PPS?) - I've lost almost 25 pounds since I went in the hospital.  yay!

Saturday, April 28, 2018

Better - But A Long Way To Go

I've given up that the doctors are, at some point, going to start listening to me.  Went for my post-op/post-hospital-stay check up on Thursday.  Lung is filled again, and I kind of already knew that, the shortness of breath had returned, and eating is difficult.  Two signs I'm full up.  From Monday to Thursday, I'm full.  I knew it was going to happen, I just figured it would be a couple weeks, not a few days.  But its happened.  So what's next??  You guessed it, I'm going back in Monday for the original outpatient surgery I went in for 3 weeks ago to have a new drain tube installed. 

At one point the doctor (he's also my surgeon) had told me that I would not leave the hospital without a new tube.  Then he changed his mind.  Said he wanted me to heal more first.  SMH.  ok, whatever you say.......and here we are.  You know, when I saw him Thursday, I could almost see him mentally wringing his hands.  I have been completely opposite of what he has expected from day one.  That's what happens when you're not use to dealing with this thing that has an underlying, unpredictable autoimmune disorder that is driving this bus.  And it goes where it wants to.  Like the old joke, "what does a hungry bear eat?  Whatever he wants!"  When he expects this thing to Zig, it Zags.  So far, everything he's "predicted" with my lung, has not gone that way.  Its almost funny, in a way.  I keep trying to tell them, and then they ignore me, and I get to watch them run around playing "catch-up" and this raggedy old lung leads then down rabbit holes.  I'm one for the books.  

There's one doctor there, a pulmonologist/hospitalist (how you like that new Socialized Medicine title - Hospitalist?).  He's clearly Middle Eastern origin, not a problem for me.  What is a problem, is when some upstart doctor gets short with me because I cut him off when he was trying to "school" me on prednisone/Humera and my immune system.  DUH!!!  He's the same dingle-berry who, back when I was there in December, when I complained about the flu headache I'd had for 3 days, and had complained and nobody listened (pain meds, you know...) and he told me I was complaining to the wrong people and that "...if you need a police, you don't go get a fireman..."  I looked at him like he'd lost his mind and told him I'd complained to everybody who'd come in my room including the girl who MOPPED MY FLOOR.  Now, if you are unwilling to help, please leave my room, I'm sick.  Dr. C, my current surgeon came in later to talk about installing the first tube.  I told him what happened, and he said "...unfortunately, he doesn't have a clue what he's doing.  I don't believe in people hurting, I'll order you something..."  he did.  Headache was gone.  So anyway, dingle-berry was coming to see me every day, and I just smiled and nodded my head till he would leave, and then I'd give him the finger after he shut the door.  I know!!!  I don't give the finger to anybody, its not me.  But I was giving him the two-bird salute behind his back.  Dumb ass.

You know - When I think about the fact that I worked for weeks and weeks, septic and sick and full of yukky infected fluid, it boggles my mind.  Dayum!  I can suck up some sick, eh?  I know many times, I just put my head down on my desk, I felt so bad.  But I kept going and going.  I worked the day before I went into the hospital.  Little did I know it would be my last day.  My last day.....

Went to the office Wednesday and cleaned off my desk, and brought home my few personal items I still had there.  Thursday morning, I went in and met with my Personnelman, and he and I  went over my retirement application, and crossed all my t's and dotted all the i's.  And it was done.  9 weeks of boot camp to get in 30 minutes of paper work to get out.

And now, I can say where I worked, and it better explains why it took so long, and how I got where I am.  When I was 19, I joined the U. S. Coast Guard in 1986 and did 5 years on active duty.  In May of 1991, after I was discharged, I came back home and got a job with the U. S. Army Corps of Engineers.  Been with them ever since.  I have been a government buyer since 1989 and got my first gov't credit card in 1992.  Last year, I applied to OPM (Office of Personnel Management) for a Disability Retirement, applied in March.  I was in the hospital in December, when I got my letter from them telling me, basically, that I had not proven I was sick enough for disability retirement.  I guess terminal lung disease doesn't hit the radar.  Also, my rheumy and my GP downplaying it in the paper work didn't help.  Mild ILD.  Huh.  well, as far as I know, dead is dead whether it takes 2 months or 5 years.  ILD is progressive, not to mention that it had taken them 9 months to get to my application, and the medical information in my package was aged and no longer valid.  Hell I was in the damn hospital getting a tube stuck in my chest, when I got their "dear john" letter.  But we must remember,, these are over-worked government workers, working for a system that is broke financially and everybody gets turned down the first time.  You have to fight for it.  Well, I'm too sick to fight.  So my boss offered a second solution, and I took it.   See the problem is I'm too young for real retirement.  I have the time, just not the age.  But there is a such thing called a VERA, Voluntary Early Retirement Authority.  A VERA has to be approved by the Commander only and is given out for hard-ships such as health issues for ones self, or a family member that they will have to be full time care giver too, stuff like that.  So that's what I did.  I have set my official retirement day as 25 May.  I will run out of sick leave next week, and actually "may" have to go back and work a couple of weeks so I still get a pay check till the retirement is done.  I don't want to, but I will as long as I feel ok.  If I get this new tube Monday and can keep it drained at home, I can do it.  But we'll see.  I have to call my time keeper Monday and see where I stand.  I think I have enough to get me through next week, then I'm out and will have no more paychecks until my pension kicks in, which could be June.  So yeah, I may have to go back for a couple of weeks.  We'll see.

I guess that's enough for now.  Still not a lot of hospital details.  Not much really to tell, I've already talked about the highlights.  So ya'll take care, breath easy, love your people.
Till Next Time....

Friday, April 20, 2018

It wasn't a flare

It was/is a massive infection.  Directly linked to the tube and its not working back in February.  The infection is not in the lung, its the fluid that had built up to a huge level...if doctor would have listened....but any way it is what it is.  I have a chest tube sticking out of me the size of a garden hose.

I came in on the 11th last week just to get the tube replaced, and I am still here 10 days later.  The fever wasn't flare, it was infection.  Infectious fluid that ran rampant around my body for 7 weeks.  I came close this time.  Real close.  I'm still far far away from being "out of the woods".  And I've already been told that when I do get to go home, I will be on IV antibiotics for sometime, and oral antibiotics for as long as 4 months, just depends.

I cry as I sit here and type.  I'm afraid I'm not going to make it through this one.  I have a long road of recovery ahead of me.  Months.  And its forcing me to take early retirement without the disability.  I'm depressed, homesick, and tired of the fight.  But I have to keep fighting, I have no choice.

If you pray, please remember me and lift my name up, when you do.  I'll check in again soon.  I would have posted days ago, but I just didn't know where to start.  Not even sure I've done it good with this.  and when i'm up to it, I'll write a post with more details of everything that's happened.

Take care

Sunday, April 8, 2018

A quick check in - and never trust autoimmune

I woke this morning, and as I usually do, I gave myself the mental once-over, then got up and moved around a bit and thought...."Oh man!!  very little swelling.  :)  its gonna be a good day"  *cue that X noise you get with a bad answer on Family Feud*.    I started thinking about all the stuff I was going to get done, and within 2 hours of getting up, feel good was gone, fever back firmly at 100, face flushed and hot, tummy sick.  Well at least I got most of my laundry done, and got the dishes loaded and washed.  its all good I guess :/  I still cry a lot.  Frustration, pain, fear.  I'm just ready for it to stop now.  I need a break.  Its been since February now.  I am tired.

Nothing new to pass, anything at this point would just be a repeat.  Still fighting this hellacious flare, tired beyond imagination.  Keep sending me good vibes and prayer for strength to keep going.  This is going into week 8 now, I think.  7 or 8.  The pollen should begin to move on soon, I should begin to feel better.  haha  but you never know what you'll get.

Keep on truckin, and we'll talk soon.