Tuesday, January 24, 2017

How Much Time Is Enough Time

I finally got my copy of To Joey With Love.  There are things in the documentary that are not on the blog, and there are things on the blog that were not on the documentary.  All in all, two thumbs up.  I wish Rory had made it longer, gave us more.  But I guess there's just so much, that is so private and personal.  I can understand that.  They have two years worth of video, and we got and hour and a half.  I really wish it were longer.  But other than that, I can highly recommend it.  A beautiful love story, a story of hope, of faith, and the belief in something bigger than ourselves.  Joey was the kind of woman I long to be.  If I only had half her tenacity, and personal strength.  Joey is showing me how to face my own end, with courage and strength.  I sobbed like a little kid at the end. 

Joey lived about 4 months once the doctors told her there was no more they could do and she stopped treatment.  4 months to prepare, to say good bye, to hold those she loved.  How much is enough?

It is my understanding that RA-Lung, on average, takes about 2 1/2 to 4 years to work its evilness.  Some less, some more.  Depending on how fast one progresses and everybody is different.  The only for sure way to know is to have a biopsy.  And I refuse to do that.  I am not going to put my body through that, nor myself through the expense, just "to know".  I know how I feel.  I know its coming.  I think I'd rather be "surprised".  I'm down a year since the diagnosis.  A whole year already.  And I have declined greatly, especially now with the pulmonary embolism, which just adds a whole new layer of "difficult" to the recipe.  Sometimes, my chest feels "hollow".  I understand that may make no sense to anybody but me, but its the best word I can find to describe it.  Just a hollow feeling.  Sometimes my heart pounds for several beats and I almost lose my breath.  And then I begin to wonder.......How much time do I have.

I told the Mr. over the weekend that I wanted to buy some gifts.  He said, "what gifts?  For who?"  I told him I want to buy a baby gift for our youngest son and new DIL.  He said "but she's not pregnant", and I said I know that, but she will be one day.  And I probably won't be here.  I want to buy something for the grandbaby I'll probably never get to meet.  And I want to buy our grand daughter a present for her 16th birthday.  Something special.  I was thinking about taking the little gold ring I have that my mother gave me for Christmas when I was 12 and having a new stone put in, and giving it to her.  The original tiny little diamond chip fell  out long long ago.  I was thinking of replacing the stone with her birthstone, and giving it to her Aunt Wendy to save for her, for when she turns 16.  I thought that would be a nice gift.  Its profoundly sad to have to think on these things.  But think on them I must.  I don't know how much time I have.  But if I'm honest, I don't see myself still here this time next year.  Not unless the lung issues slow dramatically.  Only God knows. 

I felt so good for several days after the prednisone test and adjustment.  Today, not so much.  My heart has been pounding and skipping beats, and when that happens I get light headed.  Some days, all I can do is cry.  Because I know, I'll never get better.  I'll  only get worse.  And that is sad.  I try to hide as much of it as I can, keep it to myself.  That way nobody hurts but me.  I don't mean this in a *mean* way, but I just can't talk to the Mr. about this.  I try.  But usually he just clams up, or changes the subject and 20 minutes later when I come to, he's talking about something and I have no clue what it is.  So I keep it mostly to myself.  I can't talk to my kids.  My youngest rejects it.  I think he believes I'm going to survive this.  but I'm not.  So I just "pretend" with him.  So he doesn't hurt so much.  Our oldest, well, he doesn't talk to us.  And I'm beginning to think maybe that's for the best.  Make distance now, so it doesn't hurt so much at the end.  I think, I've suspected for sometime, that I am severely depressed.  It's probably just the prednisone, but still.  I honestly can not remember the last time I laughed till I cried.

How much time is enough?  There's no answer to that, IMHO.  I don't think there's ever enough time to prepare.  But I do know, its going to be ok, even if its not ok.


Monday, January 23, 2017

Fever Update - Just As I Suspected

So I decided to do a little "test".  As stated in my last post, I had started running a low-grade fever everyday, sometimes twice a day.  The highest it got was almost 102, but generally just 99 to 101 usually somewhere inbetween, just enough to make me feel like total crap.  And I remember last year when this started happening.  It happened when I tried to tapper off the prednisone.  That was the last time I tried to get off it, and just accepted it as "part of life now".  So I did a little test.

I've been doing very well (after the flare) with taking one 10mg tab every 12 hours.  And its been working really well.  So when I started the low fevers two weeks ago, after nearly a week of keeping up with it, I decided to see what happened if I backed it down from every 12 hours to every 10 hours.  Whaddayaknow?  The fever stopped.  Just as I suspected.  My monster is craving more prednisone.  My monster is a prednisone junkie now.  Its like this "Little Shop Of Horrors" inside my body.

And I can't even begin to tell you how much *better* I feel.  My eyes are almost swollen shut, and my cheeks are so puffed out my lips are almost gone, but I feel better.  God......I hate prednisone.  But thank You for it.  What a Catch-22 situation.  Wonder how long this will last.  Wonder how long it will be before this is not enough either.  Well, I can't think about that now.  Things to do things to do.

So many projects, so little time.  SO much yarn, how will I ever use it all before I croak?  Hundreds of patterns and pattern books, many out of print.  One I have is out of print, and I saw it on Amazon for over $1,000!  A THOUSAND DOLLARS!!  What a rip-off.  I tried having a give-away one time, but got no response, so I guess I'll just leave the Mr. to deal with them all when I'm gone.   Sorry, Doris Chan, I really thought they'd beat down my door for yours, but I was wrong on that (especially since one is on amazon for a thousand dollars, and mine was free).  I have pristine copies of Every Day Crochet and Amazing Lace Crochet, both I believe are out of print.  Nobody wanted them.  I think I'll maybe get in touch with someone at the local womens shelter and see if they'd be interested.  I have several years worth of subscriptions to "Crochet!", "Crochet Today", and many others.  A dresser full.  Meh....anyway.

So the fever is under control, and I'm feeling better.  The lungs are trashed and getting worse, but I already knew that would happen.  Slow but steady.  have a great day.

Tuesday, January 17, 2017

Pain Meds

Its a subject nobody likes to talk about these days, except the media (which tends to blow things out of proportion, its all about the ratings you know.  At some point, ANY body who takes pain meds regularly (and legally) will run into an issue.  It has just become the nature of the beast.) 

I haven't spent the time to do the research, there are those that have, so the only thing I *know* for sure is that they can be a pain to get and to keep, and people look at you funny when you say you take pain meds.

**News Flash**

This just in......Not all people who are on a pain med regimen are JUNKIES.  Shocker....I know.  I just wish someone would clue in our clueless, pain-free, surgeon general, who is one of the torch-and-pitchfork carriers of this "war on pain meds (and screw those who really need them)"

I went to the ER 3 years ago, with a torn trapezoid muscle in my right shoulder, pain worse than some of the labor pain I went through (this was at a time when the RA responded well to Tramadol, before the I had to go on the big one), I crying when I got there, and at times screaming.  Any who, the ER doctor, first of all, wanted me to "re-enact" what I had done to injure myself.  What?  you want me to *show* you how I injured myself?  Of course I couldn't do it, it was too painful.  And of course after it was all over, I realized what kind of game he was playing with me.  Anyway, it's a very long story, that really doesn't have anything to do with my RA.  Its just one example of what we have to go through, when we are injured, or sick to the point that we have to go to the ER.  It was over the holiday week which is why I couldn't get to Dr. G.  By the time I did see him, two days after the ER debacle, I was in such bad shape, I couldn't lift my right arm over my head, and I had cried so much and couldn't eat or drink, I was severely dehydrated.  He popped me in the "cheek" with something to settle my stomach and something for pain, and put me on hydrocodone and Soma for one month.  I was in really bad shape.  Took the whole month to get over it.  And another several months for the pain to completely stop.

Last month when I went to the ER that ended me in ICU, the ER doctor asked me "why are you on Norco?"  "Seriously?"  "yes, SERIOUSLY".  I just looked at the hubs like "is she for real?" 
"well, first I have raging RA, I have RA-Lung..."  she said "Oh, ok".    And I suspect, but don't know for sure, that SHE is the one who knocked my dosage down from 7.5mg (which I have been on for two years) to a 5mg, which I didn't figure out until 4 days later, after I had lain in my hospital bed and sucked up A LOT of pain and couldn't figure out why the 7.5's were not working.  It wasn't until Thursday night, the night before I was released, that a new nurse was on the floor, and she brought me my meds for the night.  As she opened each blister pack and dropped the pill in the little plastic cup, she was calling out what it was and the mg, which nobody before her had done.  When she got to my Norco, she said "and here's your Norco 5mg"  I slowly turned my head towards her, kinda like Linda Blair in the Exorcists just not all the way around, and I said, "did you just say Norco 5mg?"  "yes,"  "is THAT what I've been getting all week?"  "yes"  I responded with a very deep agitated sigh and said "that's not right.  That's the wrong dosage and it explains WHY I have had to lay here and suck up pain all week".  She literally didn't know what to say, and she's not a doctor so she can't change it, and it was the night before I was going home, why say something now.  Dr. G would not have done that.  It had to be the ER doctor.  And if so, what nerve!  They have my record.  All the doctors, hospitals, and pharmacies are all  hooked up together now.  She can type in my name and see not only every med I'm on, but also what day I have them filled.  To over ride what I have been taking for over two years, to basically say "screw her doctor, I'm doing this".  next time I have to go in hospital, I WILL be checking that.  but anyway.

So Thursday, I picked up my pain scrip and took it to the pharmacy.  When I got it back to work, I was on my lunch when I picked it up, I thought the bottle felt "light".  Over the weekend, I noticed I was way down into my bottle at a point I'm never at until I'm at least a week into it.  So I counted them.  Took that number and subtracted the ones I had taken.  The pharmacy shorted me 14 pills.  14 PILLS!!!  that's 4 and 1/2 days worth of pain medicine.  And once you walk out the door with the bottle, you have no recourse. You can not go back and say "hey you shorted me".  Doesn't work that way.  I paid for a full scrip, and got 3/4 of a full scrip in return.  No recourse.  None.  Nothing I can do.  And this has happened before.  There was the time Dr. G sent me a scrip for toridal to back up what I was on during the fall flare, the scrip was written for 15 (3 a day for 5 days), but they gave me 5.  I was calling the doctors office in two days looking for more, and the one that answered the phone told me in a very snippy voice "you got 15.  You are not going to get any more until after Friday"  I told her "I'm holding the damn bottle in my hand in front of my face, it says QUANTITY 5"  "well, it was written for 15"  "then that means its the pharmacy's mix up.  Thanks for you precious time."  So I called the pharmacy and they fixed that.  But there have been times when I've gotten to the bottom of my bottle a week early, knowing that I didn't take that many extra's, and I was out already.  From now on, I will count them before I leave the pharmacy.  If it were anything but the pain meds it wouldn't be a big deal, you call them up, they fix it.  But its pain meds.  So I have to adjust.  Which means for the next three weeks, I have to cut back from 3 a day to 2 a day until I make up for the lost pills, and by that time it will be time for my next refill.  Thanks Mr. Pharmacist!  I was always under the assumption that being able to COUNT was required for that field of work.  But what do I know?

It is what it is.  Atleast I have some.  Not enough to get through to the next refill without some sacrifice on my part, but it beats nothing.


I've started running low grade fever in the late evenings again.  Just like last year, the last time I tried to ween off the prednisone.  Which tells me, that 20mgs a day is soon, or already is, not enough anymore.  *sigh*  And the Mr. keeps coming behind me to "double check" my thermometer.  I still use one of those old glass-and-mercury thermometers.  Dr. G told me once that those are still the most accurate, so I never switched to one of those fancy digital ones.  But anyway, it makes me feel like its one of two things:  1) He doesn't trust I know how to read a thermometer (he never checked behind me any time I ever had to take the kids temp. )  or 2)  He thinks I'm "putting on", or exaggerating.  Either way, its insulting.  I get really tired of being made to feel like I'm "putting on".  Its not the first time.  So I decided to just start keeping up with it, and keep it to myself.   eh, anyway.

I felt really good Saturday all day, till the fever kicked in.  And I enjoyed the day :) 

Friday, January 13, 2017

Waking Up Tired

I took off early yesterday to do the grocery shopping that really should have been done a week ago, but I just didn't feel like it, except for quick runs for toilet paper, milk, and bread.  I did the Walmart shuffle, by the time I got home, I could barely move nor breath.

Day before yesterday, my shipments were piling up in the mail room and my "runner" was out with the crud (yes, the one I've had twice now, *everybody* has had it), and I had to make the trek down there and haul up boxes and deliver them where they needed to go.  This is a ginormous building, the mail room is quite a distance away.  So today, I'm paying for the last two days.

I woke up this morning, after a good nights sleep, only one trip to the bathroom.  I usually make minimum 3.  I had already gotten up and taken my morning prednisone at 4, and went back to sleep.  Then I woke up at 6, and realized "its going to be one of *those* days....I over did it."  I felt like instead of sleeping, I ran a 10k instead.  It may even be an extra prednisone day too.  The weather here is completely wonky, we should be having deep freezes, and its been in the 70's for a week.  Which means the trees are going to become confused, and start spewing out pollen.  Well, I can't fret that right now.  I'll think about that when it comes.

I ran into a person at Walmart, that I have known, virtually my entire life.  Almost.  She and my older sister (she is my 1/2 sister, same mother, different fathers, my mom's oldest child) have been best friends since they met in high school.  I met her the first time when I was about 7 or 8 years old.  I hadn't seen her in a while.  I rounded the corner at the dog food section and there she was.  And she looked at me with that "I know you....but how?  You look so familiar....oh!  oh........"  All in the space of about 5 seconds.  And she said, you look so different from the last time I saw you.  I didn't say it, but I thought it "thanks for noticing".  :)  She's a sweetie, and didn't mean anything.  I'm sure seeing me for the first time in so long, before the lung crap, yeah, I do look a lot different.  LOL  It was just so plain on her face the shock.  I told you....its not invisible for me anymore.

So I'm just going to take it easy today.  I'll find another runner for the time being.  Its Friday.  Lets have some music.  Another of my mothers favorites.  Patsy Cline.

Monday, January 9, 2017

Fear and the Unknown

I found this on Pinterest a while ago, and it is so very true.

The unknown is very scary.  But you know what is blood-chilling scary for me?  Spring pollen flare.  Each successive lung flare has been just a teensy bit worse than the previous, and I never regain the ground I lost.  The Fall (Autumn) flare back in October cracked to ribs.  What's the next one going to do?  And in the Fall,  both lungs swelled for a couple days.  Friends, I'm scared.  Its like this cloud of doom off in the distance getting ever closer.  Since the RA-Lung diagnosis, its all about the lungs now.  Yeah, my shoulder will get a little stiff now and then, the feet and knees ache at the end of the day, the fatigue is mind-numbing.  But for the most part, its all about the lungs.  I'm trying very hard not to be afraid.  But its not easy

I find myself looking at the calendar and counting the weeks.  I live in a warm part of the country known as the "pine belt", the pine tree's are everywhere, and their pollen turns everything yellow-green.  Spring pollen starts at the end of February and can last until early May.  My lung flares have been averaging 6 to 8 weeks long.  6 to 8 weeks of triple the prednisone and pain killer.  I don't want to dwell on it, but I can't help it.  Its like my whole being is holding its breath, standing on the edge of something I can't see the bottom of.  What if this is "the one"?  What if both lungs swell to the point I can't breath and have to go on a vent?  I am afraid.  And I don't want to be afraid.  I want to stand and fight, but I'm so weary of the fight.  I'm tired of fighting.

Friday, January 6, 2017

Happy Friday

My mom has been on my mind a lot lately.  Gone now 3 years, and I still cry.  But you know, as I lay in ICU last month wondering "is this it?"  I began to wonder if it wouldn't be long before I see her again.  And gramma.  And I can't even begin to say how big the grin on my face gets when I think of that.  I also was thinking at the time..."I'm so glad mama isn't here to see this happen to me....she couldn't take it."  See, sometimes things have a way of working out for the best.

My mom loved Roy Orbison.  She loved anything Motown too.  But Roy was her favorite, next to Ray Charles.  So today, the one that stands out the most from my child hood, as she would play those old vinyl records over and over.  "In Dreams"

have a good weekend!