Sunday, November 25, 2018

Four Days And Counting

Well guys, its been a rough month.  The Mr. and I celebrated our 31st anniversary on Friday.  Which means a LOT of the last month of preparing for this huge (life changing) move to another state, has been fraught with going through and throwing out 30 something years of: old bills, a decade of tax papers that could have been destroyed a years ago, mounds and mounds of paperwork and receipts, pamphlets for the microwave, the fridge, the toaster, the washer and dryer.  Stuff that was important to keep at the time, but are now useless.  I sent to the rescue mission 7 lawn-n-leaf out door trash bags full of clothes.  An entire wardrobe for at least 3 women.  Clothes I wore to work, and some of them had never been worn.  And dirt.  omg.  Since I got sick 3 years ago, deep-cleaning my house (that I used to do at least once a month) stopped.  Especially this year, which has been my worst health wise.  I just didn't have the stamina.  Last time I mopped my kitchen floor, I had to rest twice.  Its a tiny kitchen.  So as you can imagine, this place was a pig stye.  I could only do bare minimum.  I always kept my kitchen clean (dishes and such), I hate a dirty bathroom so I always kept those clean, and I like clean sheets.  The rest got shoved to the side.  Things like dusting knick-knacks and pictures on the walls, washing curtains, wiping down the walls and baseboards.  The nit-picky stuff.  Well, I'm leaving it.

The place needs some love.  The walls need fresh paint, the carpets need to be shampooed, the windows are filthy you can barely see out of them.  I'm leaving it all.  The Mr. and I are doing what we wanted to do all along.  Get rid of our garbage (see above), take what we want, and walk away.

We are leaving about 90% of what we own.  We are taking our clothes, all the pictures and items we can't part with, my yarn hoard (which, btw, I scaled down by half and got rid of the rest), my mama's chest (God rest her) and that's about it.  I'm leaving all the dishes, cookware, 99% of the furniture, we're even leaving what ever food is left in the pantry.   We have spent most of our time making piles of keep/throw/give items.  And since we are leaving so much, it doesn't really even look like we're moving.  It just looks extreamly cluttered.  The Mr. even has a 12 x 12 shop out back that is full to the brim with tools, and all the other bits and bobs that are important to a man (because you just never know when you'll need it.  *eye roll*).  He also painted the master bath room.  It just needed it bad.

This is a complete life-changing move.  Seriously.  We'll be living with our kids.  It just makes sense, its the right thing to do.  We lost 75% of our income when I retired, and we are just barely getting by here.  Just barely.  If not for family the last few months, stepping in and helping, I don't know what we'd have done.  Its hard too when you're used to making good money, and having enough and plenty left over, and going to barely enough to make ends meet.  But we're adjusting.  We barely got by when the kids were little, before we made good money.  My mom and I were pretty poor at times.  We're no strangers to hard times.  It is still quite an adjustment no less.  Especially when our hardship is caused by my health issues.  I live with that.  I know, that's what everybody tells me.  I'm getting there.  Its a slow process.

We're almost there.  Almost done.  I'm leaving the town I've lived 40 out of the last 50 years.  Both of us have lived in this house, longer than we lived in any other place in our lives.  Its still not going to be easy.

Tomorrow I have to put in a change-of-address at the post office, having lunch with Leslie too.  That will be hard.  Leaving behind a best friend once again.  And again, not new ground for me.  Tuesday I'm having lunch with my dad.  Its going to be heart breaking because he and I both know this will probably be the last time I ever see him this side of glory.  That's all I can say about that.

As I said in my last post, I reached as-good-as-it-gets weeks ago.  But its something I can live with.  When we get settled in the new place, the Mr. and I are going to start a walk program, now that we will be in place conducive to that.  I'm going to really get back on program with my sugar too.  I've back-slid on the soda's and potatoes.  And I'm still eating Slim Jim's like there's no tomorrow.  They've become a comfort food.  There's a story about me and Slim Jim's from my child hood.  A sweet story.  But it involves my dad, and well, maybe another day.  Its just a precious memory to me.

The cough is no worse.  About the same.  I'm still doing the albuterol and the Respimat.  I've increased the prednisone several time over the last few weeks just to get through the packing and moving things around and lifting boxes.  I'm still running low grade fever a lot, and only one time it went all the way to 100.  But only once now.  Over-all, considering what I've come through, I feel pretty good.  Nothing like I used to be, but that's ok.  I have limitations.  I'm hoping once we get settled and start walking again, that my stamina will improve too.  We'll see.

Well ya'll, you won't hear from me again until we get there and get settled, and I'll come back with lots of things to talk about.  We're all looking forward to Christmas this year.  Our grand-girlie is coming out to visit.  Remember I said its she and her family that are taking over our house.  Our two step grandson's will be there.  We're going to have baked ham, and cornbread dressing, and potatoes and greenbean casserole, and cheesecake and chocolate cake, and oh I don't know what else.  Its going to be good.  I just know it.  We're ready the Mr. and I.

So you guys know the drill, right?

Be sweet, and be kind.  And love your people real good.  I'll be back soon.

One from the 80's

Tuesday, November 6, 2018

Changing Times Changing Me

Doctor and Medical Stuff

I saw Dr. Eye (aka the rheumy) on October 30th.  It was ok.  Just the usual pleasantries.  She was happy about the prednisone taper (stable at 10mg.).  So am I.  I tried 5mgs for several days, and the wheels started to come off.  Morning stiffness returned, neck pain returned, ankles swelled and hurt.  She actually agreed that staying where I am for a little while is ok.  It is still better than 20mg's a day, which was, I believe, contributing to my demise.  The big thing that came from this visit for me was getting on the scale.  I know.  I'm still letting that sink in.  I've lost another 4 pounds.  That's firmly a 35 pounds weight loss since I was in the hospital in April.  You may recall, I was 18 pounds heavier the day I checked in, than when I left 12 days later.  I never gained it back.  Yeah, again.  Imagine that.  I'm losing weight and not trying, yet my activity level went from a 6 (already at a snails pace) to a 1 (sloth-on-ambien pace).  The only real change is I don't sit around and drink Dr. Pepper all day, hence I'm drinking mostly water, or unsweet tea.  I don't eat potatoes or rice as much because of the diabetes.  I also don't eat nearly as many sweets, for the same reason.  But I eat bread like fiend.  I have always been a bread lover.

I am feeling so much better.  Really really much better.  I am now having full-days of feeling good from getting up to going to bed.  The restless legs are still driving me insane.  Breathing reached a plateau about a week ago.  I think I am at "as good as it gets".  I'll take it because its a hell of a lot better than what I had before.  Honestly, I no longer *feel* like I'm dying.  I feel changed, different, still limited but the endurance level is triple what it was before the big surgery last month.  I can live with this.  If I can continue to lose weight, and drop the last 25 or so pounds more I really need to lose to be at optimum health and feel good, dang, I might actually be able to have a life.  It was about a week ago that I actually allowed myself to even think it.

The Cough

It gets its own sub-title because it continues to be a major player in my life now.  It is a monster, but is some what controlled with an aderall nebulizer and a Respimat in haler, lots of sugar-free Lifesavers and Jolly ranchers.  I have good days, and I have days where I cough all day long.  The serious coughing fits come and go.  Some days I may not even need candy.  Somedays I can hardly talk all day for fear of setting off a fit.  It can get bad.  Is it the COPD or RA Lung?  Soon as we get settled, I intend to ask my new GP.  Who ever that is.

More Changes

Its pretty much settled, and we will be moving on 29 November to a big city in another state.  I'm scared, worried, nervous, excited, hopeful, ready, anxious, and sometimes catatonic.  There's just so much.  30 years worth of pictures, furniture, heirlooms (just family, not like expensive antiques or anything, haha), keepsakes, old insurance policies, old bills, 15 years worth of tax documents (which some of those get shredded).  Just so much to go through.  We're downsizing probably about 75%.  My house, at this point, is a maze of walk paths around random trash bags filled with garbage at various locations, to be ready when one of us makes our way back over there to start sorting again.  Nothing that is TV reality-show worthiness, but still.  And dust.  omg the dust.  Sometimes it activates the cough, and I have to leave it.  The Mr. and I have several things in common.  One of them is that we're a little scatter-brained when it comes to this stuff.  We also like to move at our own pace.  Since we have 3 weeks (and we've already been at this for several days already, and have filled up the neighborhood trash bin, once already), we're taking it slow, taking our time.  No rush.  I tire easily still, and his back is trash.  For instance, I started the china cabinet yesterday.  Its about 80% done.  I have a lunch with Leslie tomorrow, then running an errand pertaining to our move.  I should be home by 3:00.  I'll finish it then.  There are piles every where.  Piles to keep, piles to throw out, and piles to send to the rescue mission.  And I haven't even started on my yarn hoard.  Oy vey.  I'm pretty glad now I had that surgery.  I'd never be able to do this, as I was before.  No way.  

So yeah, moving to a big city.  My handsome son and his smart, pretty wife have offered to share their home.  Its big enough to support all of us with some private space.  It took me a while, but after all that has happened, financially and with my health, I was finally inclined to believe it was a smart move.  Just ready to get there and get on the other side of all this.  So is the Mr.  We bicker and argue constantly, about anything.  Probably both just ready to see some new faces again on a daily basis.  Its going to be ok.

Mentally Speaking

I'm still depressed.  Worried this won't work, and we're giving up our home (that's paid for).  What if we get on their nerves?  More than anything, I don't want to be a burden.  I just want to live.  To be happy and safe.  Content.  If it be that I don't work anymore, I want to fill my days with knit or crochet.  Trying new and exotic recipes.  I've been watching video's about curry.  I want to try a curry.  Looks a lot like gravy to me.  I want to make cookies and maybe volunteer at the public library.   To get a small aquarium and fill it with lots of pretty fish.  To draw, and make journals (to possibly sell) and make books (maybe).  I want to see historic places, and visit museums.  I want to go to out door concerts, or to listen to a symphony orchestra.  To listen to Bach and Chopin while reading War and Peace or A Tale of Two Cities.  Or re-read all six Jane Austen novels.  Again.  For the umpteenth time (sorry, they never get old).  The real deal, not on Kindle.  I love the smell of an old book.  I just want to be healthy and happy.


We were watching Pluto TV earlier and the Mr. found some documentary about Scotland, the castles and its coasts.  It was so beautiful I couldn't speak for fear of crying.  How blessed we are to have the pleasure of looking upon something so beautiful, when there's so much ugly all around us.  It soothes the soul.  And I am convinced...God likes color.  And pictures of places like the castles and cliffs of Scotland, Dover, or Ireland.  So much beauty to behold.   These I mention don't even scratch the surface.  Places I'll never see in this life, but maybe in the next one.

Be well everybody.  Our launch date to the new location is the 29th of November.  Still much to do, so much to do.  Don't be alarmed if you don't hear from me for a while.  It may be that I'm tired from packing and such.  If that is the case, I'll be back when we are firmly settled.  Otherwise, you may see me sooner.  Till then

Ta Ta and tell your people you love 'em.  Don't assume they know.  :)
And above all, be sweet and be kind.  Even when you don't agree.

Sunday, October 28, 2018

Sadness and Tragedy

What a horrible horrible world we live in.  America is quickly turning into Europe of the 1930's.  There are evil Godless people in this world.  Evil evil people.

God bless Israel.  God bless the Jews.  You are not friendless.

Friday, October 26, 2018

Getting There

Note:  Sorry about the wonky fonts.  I've tried numerous times to change it and Blogger keeps changing it back.

Just so I don't repeat myself, I'm posting what I wrote on FB Tuesday, then follow up with more thoughts and other stuff.

Yesterday was three-weeks since the big surgery. I had decided not to make any comments and reserve my opinion, for at least this long because I knew it was just going to take some time before I could gauge where I am. The past 3 weeks have been hellish, and that's putting it mildly. There were times I even thought the surgery was for nothing and didn't work, such as when I had coughing fits with ribs that feel broken, and wounds that hurt. Coughing fits made me cry. The pain in my left lung has returned and is still there. A testament to the fact that RA-lung will get them both, it is after all A-symmetrical. All that being said, compared to how I felt pre-surgery, I am one-million times better!! Saw Dr. G yesterday, and he was very pleased. I out-right asked if I was going to get better, and would I ever be where I was 3 years ago. He said I should indeed get better now, but I will never be "normal". The lungs don't "regenerate", not sure how to say that correctly. Once they are damaged, it is permanent, no going back. He said I would never breathe like a normal person again. But! I can get better which is something I'd given up on. That is, of course, as long as the RA leaves my lungs alone for a while, fingers crossed. I have tapered the prednisone again and I'm down to 10mg a day. Because of this, the RA has woken up in the other parts of my body. But that's ok. I can deal with it. I saw the surgeon for a post-op check in last week, and I nearly passed out when he said "no fluid". What?? This lung hasn't been without fluid on it in 3 years. He just grinned at me and repeated "no fluid". Miracle! Also, the drain tube was removed during surgery, and not replaced. Lets pray I don't need it anymore. I figured that was something I would have to live with for ever. God is good ya'll! So. To sum it up, I am so very much better! Breathing, while not "normal", is a million times better. The over-all body sick is finally gone. Is this the end of the story? No. RA has no cure and I stopped trying to predict and second guess it. I don't know what its next trick will be. All I know is right now, at this moment, I'm so much better! For that I am grateful! Thank you for the prayers, good vibes, and positive thoughts.

And that's pretty much where I am.  Monday was a very good day.  I felt good all day.  All. Day.  That hasn't happened since January after I got the first drain tube installed.  Tuesday was pretty good too.  But I think I over did it because since then, it hasn't lasted all day.  The RA is fully awake now in my joints.  I always said I was in remission in my joints since the lung issues started.  I don't think so now.  Now I think it was the 20mg of prednisone a day that kept it silenced.  Which also only exacerbated my immune system issues.

Sunday, Monday, and Tuesday I tapered down to 5mg a day.  And it got bad enough that I went back up to 10mg.  I'm stopping there for a while.  It comes down to 2 options.  Tapper off completely and feel like shit all the time (now that I no longer have MTX to help) and have a longer life with little quality of life, or 2) take the 10mgs a day and deal with what's left with Tylenol and have better quality of life, for possibly a shorter amount of time.  I'm choosing option 2.  Even Dr. G has said he didn't think I'd ever be able to get off it completely

There's a very good possibility the Mr. and I may be moving to another town, in another state soon.  There are lots of reasons why, not to mention it would solve a lot of our issues here with the house falling down, and the crappy neighborhood that is going to the shitter pretty quick now.  My health, the Mr.'s health.  It would just help us out, and help my kids out too.  Lots more to talk about that at another time.   We will be living in a big city again.  It's been a long time since we lived in a major city, like in the top 10 biggest in the country.  There will be so much to do and see.  Here, we're just two rotting potatoes.  No life.  At all.  And we bicker constantly.  A new place to live, in a new town, in a different state.  One door closes, another one opens.

Don't feel like going into all of it today.  I've taken some Tylenol PM and a benedryl to try and sleep because I didn't sleep last night.  It was after 5:00am the last time I looked at the clock.  It happens.  Actually, if I don't take T.PM. and a benedryl about an hour or so before bed, I won't sleep.  Not happening.  I never had this problem until after menopause and prednisone.  So Much Happened to me after menopause.  That too is a long discussion for another day.

I'm never going to be who I was 3 years ago when this all started.  But I can get better??  Is that even possible?  I had lost hope that it was even possible.  I've been planning to die for 3 years.  Dr. G and I talked about that.  As you read above, he thinks I *Can* get better.  Or at least a new normal.  He also said that had I not had this surgery, I was going to die.  It was just a matter of time before I got another bad ass infection I couldn't fight.  I've had 3 infections this year alone.  Either way, my future was very bleak.  He said that now though, he thinks I can get better.  My function will always be limited.  But I'm no longer actively on my way out.  Incredible indeed.

I've been to hell this past year, and I have the scars to prove it.  Literally.  The Mr. said my right side looks like I got shot.  Three times.  But I can get better?  I just shake my head at that.  See, I don't want to hope to high, or expect too much.  Because every time I have, I got the carpet yanked out from under me.  How many times have I said "...once I get over this and get to the other side, I'm going to..."  And it just never happened.  So I am approaching this whole idea of "getting better" with trepidation.   Hopeful, but realistic.  Hoping for the best, preparing for the worst.

Also, the cough is still with me.  And seems to be worse since the surgery.

So that's where I am.  So much better.  So much.  But still unsure of how *good* its going to get.  What does the RA have up its sleeve next?  I dunno.  I don't have an answer for that.  Some things we just have to give to God, and live well as we can.

Ya'll be sweet, tell your people you love 'em.

Amy Winehouse?

Friday, October 5, 2018

Its All Good

Not a real post today.  Just wanted to stop in and say "I made it".   I got home from the hospital yesterday.  Feel like I got hit by a bus.  Lots of things are already better.  Just trying to heal, and get over it.

I'll be back in a few days or so with details.

As always - Be sweet

PS- I'm still wrong on the procedure.  Its not "demarcation", its "decortication" and that's not even the big medical word on the paper work I got.  When I come back, I'll talk more about that.

Saturday, September 29, 2018

Two Days And Counting

I have had a very busy week, but was determined to stop by again before Monday.

Last week, I shot off another email to OPM about my military deposit refund.  It was snippy and I basically said "its been a month since I contacted your office regarding this...blah blah blah"  Get this...the very next day I get an email from a nice lady who basically said:
"Sorry its been so long but I have been out several weeks with an illness.  This should have been processed while I was gone.  I have processed the refund this morning....blah blah blah.."
So I open a window and go to my bank account online, login, and OMG!!!  My money was there!!  All $1,500 of it!  Boy we really needed that, what with the week coming up.  The hospital is 40 miles away, and that's a lot more gas than normal, and the Mr. eating out over there and such.  What a blessing.

Also, got the phone call yesterday, and the crew is expected here in a couple of hours to fix my foundation issues.  Yay!!!  *happy dance happy dance*.  No more getting dizzy in the kitchen.  This is such a good thing, I can't even begin to tell you how good this is.

Its kind of funny how sometimes, everything just comes together at the same time.  Now all I need is a letter from SSDI saying I've been approved and should be looking for my first disability payment October.  But since that is Monday, that aint happening.  But I can dream can't I?

The last two days the cough has been a monster.  I didn't sleep hardly at all Thursday night, and all day yesterday I sucked on hard candy all day.  Even the two inhalers I have didn't stop it.  But I wonder how bad it would have been without them.

The fever has almost taken on a life of its own now.  Clearly obvious at this point that this is not taper fever.  I already said I stopped my evening dose, right?  Can I tell you how proud I am about that??  Maybe....just maybe!  After this lung thing is done, maybe I could get back to "as needed" on the prednisone.  I'm so hoping the RA will leave my lungs alone for a while after this.  Wouldn't that be wonderful?  However, the RA is waking up in my body since I stopped taking the evening dose.  Yesterday, all the stuff that used to hurt, hurt.  Like my ankles, shoulders, and my neck, ohmygoodness my neck!  Still, yay on the prednisone taper!!  I'm having visions of going back to work, but just part time.  Maybe I can get a job at Hobby Lobby!!  Next best thing to working at the yarn store.

Well peeps, I'm going to sign off here now.  I'll check in next weeks soon as I can.  Send me good vibes and send up prayers that this all goes ok.

Be sweet and I'll be back soon as I can.

Wednesday, September 26, 2018

All Set For Surgery - And I got My Procedures Mixed Up

No, I'm still at home.  I had anticipated being put in yesterday, but that didn't end up being the plan.  I am first up Monday morning, and have to be at the hospital at 5:30am.  The butt-crack of dawn.  But at least we'll avoid morning traffic.  Big plus.

So I met the surgeon yesterday.  I'm impressed, I like him.  Once again, no dilly-dally, cut to the chase.  

OH!  Very important side-note.  I got my procedures mixed up.  I had the lung lavage (two of them) back in April when I was in the hospital.  This is a lung *demarcation*.  And that IS more invasive.  I'm a dunce.  Ok, back to the progam in progress...

He's a nice gentleman.  Good bedside manner.  You can tell he's very self-assured but not overly impressed with himself.  So his plan is to go at this with a lung lavage in mind, but if its too bad, move to the demarcation.  So I could actually have just another lavage.  But I doubt it.  We'll see.

Good news!  I have finally managed to cut out the evening prednisone dose!!  Go Me!!  I finally made it.  Once it was obvious that the fever was not a taper fever (inflammation fever), and I started treating the fever properly, crossing the finish line on cutting it out, came right on along.   I'm pretty happy about that.  And that can only help next week when I'm trying to get over this procedure.  My chances of staying on top of this infection, improve a lot.

Just wanted to stop in and give an update.  If I don't come back before Sunday, I'll check in soon as I can.  Planning to take my laptop with me.  Just not sure how many days it will be before I feel like getting on the thing.  Send me good vibes!

Be sweet be kind!