Friday, August 11, 2017

Friday Post

So far, I'm on top of the flare.  Good enough that I've not had to increase the prednisone.  yet.  The left lung is letting me know when its time, for sure.  But not like I know it *can* get, like back last Fall, when I could only get 5 hours out of 10mg, and was up to 50mg a day.  Yeah.  It can get like that.  It HAS gotten like that.  So good.  Its bareable.  Lets hope it stays this way.  Lord please let it stay this way.  I ran short on pain meds though.  Its hard to sleep when it hurts like hell just to recline, like somebody stabbing me in the chest.  So this last week, I've been taking a Norco before bed.  Like I said, I ran short.  But my pick up day was Sunday, which doesn't count, there were 31 days in July, and Dr. G takes off a lot on Friday's.  Like every other Friday.  Anyway, I called yesterday to try and get a new scrip.  LOL...they didn't even call me to say "no".  I got the auto-call this morning saying it was ready for pickup.  So, from now on, I don't care how bad I'm hurting, I get three a day.  that's it.  I'll just make up the difference with Tylenol.  yes Tylenol will eff up your liver over time, but they know that.  But I won't run short again.  I'll suffer.  And suffer I do sometimes.

See that's one of the things that just blows my mind.  A few years ago, "they" revamped the old Hydrocodone, took out most of the acetametaphin (Tylenol) because it can damage the liver, and re-named it "Norco".  So, those of us with chronic pain diseases only get so much 'real pain relief' because of the witch hunt on painkillers, so we have to supplement with Tylenol.  So, you tell me.  6 on one hand, half-dozen on the other.  makes perfect sense doesn't it???  Whether it comes by way of a big pain killer, or OTC Tylenol....acetemetaphin is acetametaphin is acetametaphin.  And what's worse for me, after the second blood clot scare, I'm now on blood thinner for life.  Which means I could no longer take my beloved Alleve, with naproxen sodium.  That stuff is WONDERFUL for inflammation.  But not for me, not anymore.  So I supplement with Tylenol.  The stuff that damages the liver, and they took it out of Norco because of that, so I just have to "put it back in".   SMH.

Going to eat bar-b-q tomorrow at young-son's house with him and his sweet wife, my DIL.  The one who's going to have a baby!!  SQUWEEEE!  so......excited.  a little boy.  :)  *grin*  Must finish grand-girlies birthday afghan pretty quick now, so I can start his.  and the matching turtle.  that's what she's requested.....a turtle.  I gotta go to Hobby Lobby and get some fiber fill for that.

I think we're getting close to having *another* person in here to replace me.  you may recall, the last lady who accepted the position, backed out for a better offer.  whatev.  Considering my view (top floor, front of the building, double window), and what I do, and how well we're treated.  Well anyway, good luck with that hon.  Anyway, we've interviewed two ladies this week.  And I am hoping they make a decision by Friday so the offer can get made and I can get somebody in here to train before I leave.

Before I leave.....still don't have the official "phone call" yet.  Still waiting.......
Hope to be out of here by September.  We'll see.

Well, ya'll have a good weekend.  Chill and be still.  And as my dear friend Cass says "breath easy".

Ya'll be sweet.

Wednesday, August 9, 2017

Its Already Started

The fall pollen, which  *shouldn't* even start until next month, has already started.  As I recall Spring pollen was early too.  I got through the Spring virtually unscathed.  I don't think that is going to be the case this time.  Left lung has been swollen and tender since the weekend.  I keep thinking, it cracked two ribs last fall pollen, what's it going to do this time.
We'll see.

Friday, August 4, 2017

A New Normal

In the 30 years we've been married, there are only just a small few of those years that we didn't not have a pet of some sort.  We've had quite a broad range of pets, thanks to the kids.  Dogs, cats (at one time, we had 17 cats.  All outside cats, thank you), fish, rabbits, and even an African aquatic frog.  many many dogs, many cats.

So it was strange, yesterday when I got home from work.  Tink didn't come out of my room (from napping all day) and greet me, as she always does.  And that was sad.  Its been over 20 years since we had no living pet in the house.  We love our animals.   Can't watch those ASPCA commercials on tv.  why do they do that??  Isn't that exploiting those poor animals?  Anyway, we change the channel when those come on.  There was a time way back, before I got sick, that we dreamed of buying a big plot of land before we retired, and take in sick or hurt animals, and those nobody wanted, those that would die in the wild on their own.  The three-legged dog, the blind cat, the abused pony.  The Mr. and I both have huge hearts for animals.  I told him we could turn it into a charity and take donations and have fund raisers for food and vet care expenses.  Alas, God had another plan.  :)

We both cried yesterday.  Of the few things I've seen bring the Mr. to tears, one of them is losing a pet.  A new normal.  Do you know how tempting it is to get a puppy?  But that's not a good idea.  When I retire, we want to travel a little.  Take a nice long vacation first of all, and go down to Panama City where the MIL lives and stay a whole week or longer if we want.  No pets to kennel or beg somebody to care for while we're gone.  It just makes life easier now.  In that respect.

Secretly, though.  In the letter I have left for his sister and her husband, I've requested that they get him a puppy when I'm gone.  He loves animals, and I thought it would give him a reason to go on, something to care for and love, I figure it will be therapeutic for him.  Won't he be surprised!!!  I thought I'd even include a card for him.  :)  From me to you by way of their hands.  I think its a great idea. :) 

A new normal.  I could get us a gold fish!  :)  We've had those too.  Well it actually belonged to son #1, he won it at the school carnival.  And then I accidentally killed it.  It was an accident!  I was spraying a baking sheet with non-stick spray to make cookies, then realized the fish bowl was in the line of fire.  and I thought "oh shit.  That can't be good."  I looked over into the bowl and there was a thin film of oil on the water.  I went to find another suitable bowl to put him in and by the time I got back, 5 minutes tops, he was a floater.  just that quick.  So I made the Mr. run to the pet store and get another one.  I don't think the kiddo ever figured it out.  anyway -

Its Friday - yay!  I get to sleep in tomorrow.  Yay!  And I'm having lunch with 2 of my best friend-girls, Yay!  So ya'll have a good weekend.  Until next time,


Thursday, August 3, 2017

Another Sweet Creature Lands On The Rainbow Bridge

I  had to put my last dog down this morning.  She was actually my mom's dog, I inherited her when mom passed 3 years ago.  Nearly 15 years of love and companionship she gave to us all, a mini-dauchshound she was.  Rest in peace now Tink.  And give Happy a big hug for me when you get to the bridge.  Sweet dreams baby girl, I'll see you again.

Monday, July 31, 2017

A good visit with the GP - And the new grandbaby is.............

Had a good visit with Dr. G on Friday. We talked mostly about my esophagus and this huge belly I have, which btw, my Rheumy thinks is mostly fluid, I think Dr. G. agrees, and would explain why my feet and calves look like sausages by the time I get home from work....which btw (again), I hope won't be for much longer. We talked about my lungs and progression, about how the PE is gone, but I don't breath any better, once ground is lost, its lost. He confirmed that the chroni...c plurual effusion on my right lung is bigger, after the upper (and now lower too!!) GI he is scheduling me fore, once I get over that, he wants me back at the Pulmonologist for lung function (ugh!! I dread the thought) test and his opinion on whether surgery might be something to look at in removing the lung fluid that has now, obviously, turned to jelly because its so old. Here's my delima.
I have to ask myself a couple of questions. 1) If I have this surgery, do they go down the throat, or open me up? I'm thinking "throat". 2) Will this "lung hoovering (borrowing a Brit term here)" reverse the damage, 3) Will it add time to my life, and 4) Will it stop the Fibrosis progression.
1) Probably throat - I'll research
2) No
3) No
4) No

So! I'm thinking.......NO on surgery. I haven't gotten to that bridge yet, but it won't be long. By next month sometime, I'll be at the pulmonologist, and I'll have to make this decision. Why put my self through the expense, the danger, the recovery, when the only thing it is going to get me, is I might breath a little better, for a little while. It won't buy me time, nor reverse the damage already done? I have no immune system, I'm already compromised. What if something happens while I'm under? I just don't know if its worth it. Would love some opinions.

Am I crazy thinking, or does my line of thinking make sense? 

Over all, a very good visit with Dr. G.  I love Dr. G.  Oh!  And I told him about the Doctor at the walk-in and him freaking out and wanting me to have a CT.  Dr. G just grinned real big and said "when plural fluid ages, as old as yours two years now almost, it will show up on an xray as white, and to the untrained or new doctor, if they are not familiar with this, it does indeed look like a large thick mass, and it will concern if you don't know what you're looking at."  See.  Its all good.  Dr. G, he's got me.  I trust him implicitely.  *He* is the reason the Mr. and I don't relocate once my disability retirement goes through (looking at the phone.....waiting for the phone call.....).  With all the trouble chronic-pain patients are now having getting the meds, and I, *most fortunately* have a doctor who not only understands, but empathizes.  I have no trouble, knock on wood, so far, getting what I need.  Look what's happened in Arkansas.  If I am understanding correctly, the state of Arkansas has mandated that all patients on regular pain meds, their doctors are now required to lower their dosage, and take them completely away from some.  I have to agree with what I read in an article from Chronic Mom (click on my blog side-bar over there on the right to go to her site, the article is there).  How many people who suffer from chronic daily pain will off them selves (trying to let this get through the filter, so not using the "S" word, but you know what I mean) before the witch hunt on pain meds stops?  Oh and news flash - Not every body who takes pain meds are junkies, Mr. Surgeon General (the buffoon who is helping drive this bus).  I've heard a couple of RA'ers say they will end their lives if they can no longer have the pain meds.  I understand.  Norco (Hydrocodone) is the ONLY reason I've been able to continue to work these last two years since it got really bad with the lung issues.  Do they even stop to think about that fact?  The fact that if you take them away, people who suffer with pain but yet are still in the workforce, paying taxes, do they even think about  how many will be forced into disability, and living off the taxpayer?  When just allowing them to have the meds they need to work and function, would allow them to continue to be productive citizens of society.  Its an exasperating situation.  Its a situation that doesn't have to be.  we're going to lose a lot of good people slowly.  And if I was a nutso-conspiracy theorist, I'd say the Gov't and the "powers that be" don't give a damn anyway.  They've been yelling about the world being over populated as it is.  They sure don't *act* like they give a damn, and EVERYBODY who takes pain killers is a junkie.  but anyway.....

In other news -

The Mr. and I went to son #2 and DIL's "gender reveal party" yesterday.  No, this is not some LBGT blowout.  Remember, my DIL is gonna have a baby!  :) :)   So, when the reveal-sonogram was done, the doctor wrote it down and sealed it in an envelope and my DIL gave it to her best friend.   I never realized my kids had so many friends!!  I'll bet there was over 100 people there.  It was good food, and I got to hug my kid whom I haven't seen in a month (he works 16-17 hours at least 4 days of the week, then its 12 the other days.  He works so hard).  And my grandbaby that is due in January is going to be................

Its a BOY!!!
Aaron Asher

Way to go buddy!!  I wish you and the love of your life, all the happiness in the world.  And I hope and pray your lives together are as long as your dad and I (32 years together, married 30 this November).  We love you both very much.  One day, you'll read this when I'm gone.  Love this little one extra for me.  :)  Love, Mom

well that's all for now.  So ya'll be sweet and tata till next time!

Thursday, July 27, 2017

RA Lung - Deadly

If you take Methotrexate then please be proactive and get a chest xray at least once a year.  RA-ILD is NOT rare, its just very underreported.  Heart and lung issues are #1 and #2 killer of people with RA.  Please insist on an xray, what can it hurt?

Wednesday, July 26, 2017

Do you ever look forward in anticipation of a Dr. appointment?

I do.  Sometimes.

Ever since Dr. G said the words "it may be your esophagus..." it makes more and more sense.  Could this be why some days (like today) I wake up nauseous?  Rarely to the point of actually vomiting, but it happens sometimes.  But 4 days out of 7, I wake up sick at my tummy.  This has been going on for months.  And months.  My tummy had issues before the Great-3-Week-Crud-of-2016 in December, but ever since then, its worse.  Not only that.....

But for the last 3 years or so, at least, sometimes if I'm not careful and don't chew my food to the consistency of baby food, when I swallow it feels like I'm swallowing razor blades.  Its put me on my knees before, doubled over in tears until it subsides in a minute or two.  And the pain is right at the top of my tummy where the food drops into it from the esophagus. 

I've noticed in the last month or so, if I'm not careful just swallowing my own spit, I will choke on it.  Choke on my own spit.  Sometimes liquids feel like planks going down.

The IBS.  With D.  And N, and as I said occationally a V. 

Ready to get this upper GI done and lets see what the hell is going on un my tummy and throat and hopefully.....fix it.  If possible.

I haven't lost my appetite.  I still get hungry and thirsty.  I just have to be selective sometimes what I choose and when.  I've not run any fever in a couple of months now.  That's good.  That's a good sign.  I just want some relief from this monster that sits out in front of me!!!!

And I fell again.  No real damage this time, thank God.  I think I got a little carpet burn on my elbow and my left leg, but that's about it.  But still.  Two falls in less than 3 weeks.  Is this a new trend?  My gravity is off center with this ginormous belly sticking out in front of me, that Dr Eye is sure is fluid.

Anyway- Not a real feel good day.  I'm hoping it improves as the day goes on, it does sometimes.

Ta ta for now.