Friday, April 28, 2017

Melt Down

Did I mention my car was fixed?  Turns out, that $400 alternator I had put on back in August, melted down.  "It's not just burnt up....it's SLAP burnt up.  It even melted some wires, lucky it didn't catch fire."  Those are my brothers words, not mine :).   So no part to buy, since it was still under warranty, and free labor!  Win win!  Little Red and I have been back on the road this week.  What?  you don't name your cars?  My mothers pet name that all her friends called her was "lil red".  In her youth, she was a little bitty thing, with flaming auburn hair.  She was a beauty in her day.  So I named the car after her.


Circa 1964

Her birthday is coming up on the 4th of May, she would have been 75.  Love you mom, I'll see you soon.  Hold my seat for me.


Yesterday and last night,  wait let me go back farther.  Tuesday after work, I did the grocery shopping.  Will I ever learn?  Apparently not.  By the time I got home from Walmart, all the meds had worn off, my chest felt like it was literally on fire and I could barely breath.  So yesterday....you got it.  I paid for it.  I felt like something the cat dragged in, all day long.


Pam invited me to McAlisters, her treat, for lunch.  I always get the pastrami on rye and its always so good there.  The juice runs down my arm, so tasty.  Not yesterday.  I told Pam if the place wasn't so packed, and I didn't dislike confrontation so much, I'd take it back and get her a refund.  The meat was dry, flaky, brittle, tasteless and smelled funny.  It was the worst pastrami I've ever had.  And I've never gotten bad pastrami from there.  So therefore, lunch didn't sit well on the tummy, naturally.  Which just added to the already dead-warmed-up feeling.  I hung in there.  At about 7:30 last night, I just melted down.  I felt so bad, so sick, in pain, breathing like through a straw, and I just burst into tears.  I just looked at the Mr. and said, I'm getting worse and I can't stop it.  He asked when I last took something for pain, because he knows when I melt down, it generally means I'm hurting and probably have been "keeping on the good face" all day and I'm exhausted.  It had been 5 hours so I took something for pain, which I didn't want to do.  You only get so many to have a day, taking an extra means you have to subtract one somewhere.  And you can't take too many extra's or you will short yourself.  So I took one, and a Tylenol PM.  Peeps.....I slept ALL NIGHT.  I didn't turn out the light until 11:00 because I started a new project.  but I don't remember a thing after the light went out, until my bladder woke me at 5:30!  I feel so much better this morning.  I get my Humira injection today too, so that will help also.


Well friends, have a great weekend.  Hopefully it won't be long now, I'll be doing this from home.
Be Sweet.
Me and Mom - 1984
I was 17 - *SMH*  Where does the time go

Tuesday, April 25, 2017

Feeling Guilty For Feeling Good

The internets has allowed me to meet and become acquainted with some really wonderful people.  


This world is mad, truly mad.  If you don't believe the globe is riddled with wing-nuts and loose cannons, turn on your news and give it just a 1/2 hour of your attention.  If you can stand it that long.  Personally, I can't.  I stopped watching "network" news years ago, at least 25 years.  I think I became so disenchanted with the networks during the first Clinton debacle and whitewater and all that crap, and the way the networks covered up so much wrong doing, I lost respect for network news and stopped watching.  If they are not going to be honest, what's the point?  Doesn't matter which network you watch, they all LIE.  There are those that lie a lot better and more often than the others, but still.  When you are out for ratings, anything goes.  No, if I want news, I go to places on the net that are not competing for ratings.  Their only goal is to state the facts, tell the news, and be done with it.  No arguing and yelling over each other so that NOTHING can be heard or understood, no arm-chair warrioring.  Just the news.  And those news outlets are out there.  They are few, but they are there.  Anywho-


Back to my original subject.  I have met some really great people through the net.  People who have what I have.  And I have to say, in comparison, I am so much better off health wise, than so many.  Even though I'm considered "terminal".  My heart cries for some of my friends who suffer greatly (and that is putting it mildly).  I read their blogs and watch their video's, and I am filled with compassion with what they suffer, especially the "non-responders".  God bless all of you!


Before my ILD diagnosis (interstitial lung disease aka rheumatoid lung), my RA was very well controlled, well managed.  I responded immediately to the Remicade (the first biologic I was on) and MTX.  And with the exception of the mind-numbing daily fatigue, and ankles that became trashed pretty quickly, I would say my RA was "mild".  I limped a bit, I fell down a lot (still do :)), I was exhausted 2 hours before the work day ended.  But I wasn't nearly as bad as some.  And even now, while being "terminal" I can still say the same thing.  Incredible.  This disease is just incredibly unpredictable, and extreamly different case by case.  Let me try and get to my point here (there's a point?).


I went from "well controlled, mild case" to "average life expectancy 2.5 to 4 years, depending on how fast you progress and everybody is different" in a matter of weeks.   Even now, when I KNOW I'm on the way out because I can feel my lungs dying and losing ground, more every month it seems.  But yet, when I compare what I go through on a daily basis, to some of my friends (who don't even have RA lung, nor any organ involvement), I can't help but wonder....why.  How very strange.  Sometimes, I feel guilty for feeling good, for being "in better shape" than some of my RA friends.  This is truly a very unfair disease.  I have my days.  There are those times when this monster lashes out at me, and puts me on my arss for weeks.  Its cracked bones.  The steroids have completely changed how I look and distorted my face and my body (as if the RA wasn't enough).  Sometimes, when I breath out, my lungs "whistle" and sound like a mewing cat.  Seriously, a mewing cat.  I don't "feel well" a lot of the time.  I have a chronic effusion on the right lung that "twitters" when I cough.  But for the most part, I'm still managing.  I still feel guilty sometimes, for feeling good.  I want all my RA friends to feel good, to be well managed, controlled, remission, any of the above!  If only it were in my power to make that happen for them.  I would.  And those stupid tv adverts for our meds make RA sound like the flu.  It makes me want to march right into the CEO's office at Big Name Pharmaceutical and shove his/her face into the lives/blogs, videos of the people who suffer mercilessly in the body and then say "NOW will you stop acting like this is a head cold and get serious with some research for a cure??"  I've even had people tell me, after I've explained to them what RA truly is "wow, I never knew it was like that, the commercials on tv make it sound a lot less "serious"".  Yes.  And therein lies a huge problem.  I honestly believe that is the biggest reason why RA only gets 1/12 of the research funding of Lupus, much less than other more rare diseases that have the same mortality rate as RA.  Hey, its just another form of arthritis, right?  yeah, tell that to somebody who's been in full-body flare for two months and have to have help cleaning their own bottom.


Well, I believe I have rambled on long enough now.  My RA buddies....you guys rock!  Because you kick ass and take names every day.  You are the strongest people I know.  I love you all :)



Monday, April 24, 2017

I Had To Go Away For A Few Days

I had a Rheumy appointment with Dr. Eye Thursday morning at 9:00, and I didn't come back.  Until today.  I had a little mini-flare.  Just the usual, low grade fever, flu symptoms, lungs tender (but still no significant swelling....YAY me!!), just not feeling it.  Lots of chest pain now.


Much better today.  I think the pollen is beginning to wane.  Its time for it to be over now, generally by the time May rolls around, its all gone.  So if I can make it two more weeks, that's an entire pollen season without the usual mega-flare.  Un-believable. 


So, no significant lung swell.  I can't help but wonder, and I don't even like to say it out loud, because then its "out there", but I sure hope this isn't a "calm before the storm".  I'm going to be grateful, and not dwell on it.  I was very very anxious about this spring season, and I'm fine.  But that's the thing with Rheumatoid Disease, very unpredictable, and no two flares are exactly the same.  No two cases of RD in different individuals is exactly the same.  Take my hands for instance.  You've heard me say, the RD has never, ever bothered my hands.  And with most rheumy's, that's the first thing they look at, and the first thing they want to x-ray.  Look at the RD med commercials, what do they show you?  An x-ray of a hand with distorted digits, they always show the hands.  I read a comment in a forum once by an RD patient and she said that she had been told by a doctor that because it wasn't in her hands, then it wasn't RD/RA.   *cue deer in headlights look*.  See, sometimes WE have to school the doctors.  And you've heard me say, if you want to know what a particular disease is *really* like, ask someone who has it, don't ask a doctor.


Oh!  Dr. Eye did say that I am on more prednisone than any of her other patients.  ya'll, I came thisclose to asking "So does that mean I'm no longer "not nearly as bad off..." as your other interstitials?"  But I took the high road.  I like Dr. Eye, she's a very kind doctor, she listens to me.  She has a good bedside manner.  I wouldn't change now unless I was forced to.  She and Dr. G take good care of me.  There have been issues now and then, but that's to be expected I suppose.


So I'm back.  Feeling better.  So so ready to be done with this though.  Ready to not work anymore.  Crocheting and knitting my butt off, trying to keep occupied.  Trying not to dwell on family issues that I can't change, it is what it is.  The hubs and I heard The Oldest got married.  I heard it in town from a mutual acquaintance.  Can you believe that?  I head my son got married from somebody I ran into in town.  "I heard congratulations are in order!"  oh....I guess they did it then.  We don't do Facebook, and I heard it was out there.  I hope it works out, truly.  I wish them all the best.  But if she stays, she's going to have a long row to hoe.  And I hope she sticks to her guns and makes him get help.  Otherwise, she's in for misery.  I finished his Letter.  Just a few more to go, and I'll be all done with those.  I don't think he's going to like his letter, but I've held back for years, things that needed to be said.  Doesn't matter how hard you pour your heart out to a boarderline, they never see it that way.  I know.  I already tried with my mother.  But in death, maybe just maybe my death will make him understand, see things from our perspective.  I can only hope.  But then again he broke my hope.  I guess there's still a tiny speck of hope, lost in the crevasse of an empty, waterless well.  *sigh*  I love my son very much.  But anyway, lets move on or I'll cry again.


Son #2, don't see much of him, he's been on shift work 16 hour days.  He's a tig welder (whatever that is) for an "international paper processing plant" which means you probably can guess who he works for.  but anyway, such a good kid.  HA!  as I was writing this, he texted me "I love you mom, hope your are doing well this week"  <3  God, I love that kid.  He's going to be 23 on the 26th this month.  Hardly seems possible.  Here's a pic, I think he's about 9 in this one.  he was my sweetie.  He even told me one time when he was really little, that he wanted to be my boyfriend.  :) :)  so so sweet.


He's honest, down to earth, hard working.  Goal oriented, doesn't mind putting in the work to get where and what he wants.  22 years old, and just bought his first house.  2,300 square feet with a huge yard.  Bought a brand new truck too.  And without MY help.  Didn't ask me for a dime, didn't even ask me to co-sign anything.  I would have though.  I guess he was watching everytime his brother skimmed me.  This child here, never gave me even one moment of trouble.  I only ever got two phone calls from the school on him, and one of them wasn't even his fault.  I never had to worry about where he was or what he was doing.  He never did drugs, or hung out with a bad crowd.  This child was every parents dream kid.  I've always said, every parent should have at least one kid like this one.


Love you buddy!
so.....proud.

Well, I suppose that's it for today.  Mini-flare is over, lets hope that's it for this season. XXX fingers crossed and all that.  Ya'll be sweet, and take care of you.

Tuesday, April 18, 2017

Don't Take Meds In The Dark

Lesson learned.  I take 9 pills every morning soon as I wake up around 6ish (10 if its also time for prednisone).  I say it that way, because most nights, I'm up every hour going to the bathroom.  So which ever time that is, that is closest to 6, I'll take my meds.  It is my habit every night, to gather all my meds and put them in a little plastic cup.  You know the ones that come with a bottle of OTC medicine like Nyquil, or liquid Benedry, little measuring cup.  I have one of those, and every night before bed (while I'm still lucid), I get them all together, so at the appropriate time, all I have to do is down the contents of the cup, and slam them with water, which I keep on my bed table for nightly sipping.  Sipping mind you, not gulping....I'm trying to stay asleep all night.


last night, I turned off my light and turned on Netflix on my Kindle, and just as I was about to doze off, I remembered that I had not got my meds sorted.  *damnit*  And of course by this time, I was too sleepy (Tylenol PM for bed every night, means I maybe might sleep more than an hour before getting up to pee the first time. ) and too lazy to turn the light back on and do that.  I reasoned within myself (bad choice #1), "eh, I know the bottles by touch anyway, I'll just take the little bottles, one Norco (that's a big bottle) and the rest I'll take when I get up for my shower.  The "little bottles" are 1) blood pressure, 2) anti-anxiety and 3) prednisone.  Now...I had taken my prednisone at 10:00 just before I turned off the light.  But I was reasoning again (bad choice #2), "but I put that bottle aside away from the other two (that are the same size bottles), it will be ok.  I'll figure it out (at 6 in the morning...).   So what did I do?  I took anti-anxiety and.....another prednisone.  And didn't figure that out until I came back from my shower and turned the lights on.  So now, I'm chatty Kathy, my eyes are already swelling, but hey!  At least I won't need another one until after I get  home from work.


 lol....I'm strung out on prednisone.


Obvious moral to the story......don't be a lazy jane, do the meds before bed.  Lesson learned.  :)


PS...forget what I said about 'remission in the joints'.  Fuggetaboutit.  Everything hurts this morning.  Even WiTH the extra pred.

Monday, April 17, 2017

Somtimes Depression is a Symptom

I'm depressed.  *sigh*


When my mom died 3 years ago, I inherited her car.  A really nice car.  And you know how old ladies drive.  When I got it, the car was 8 years old and only had 32,000 miles on it.  It was show-room condition.  She only ever went to Walgreens, Walmart, Buger King, and her other favorite drug store.  Oh, and the bank.  That's it.  I know....I checked her bank records. 


Well, I'd had it about 6 months, and something happened to the transmission to the tune of $1,500 in repairs.  Got that taken care of, after being in the shop for a week.  Man....what a fine ride.  My mom may have not had all her mental faculties (a very very long story, for another time), but she had good taste.  In clothes, cars, furniture.  You punch the gas in this thing, and it will get away from you quickly.  Passing and merging is not an issue in this car.  Its a 2006 Toyota Avalon.




I love this car for many reasons, mostly because it was mama's.  Our relationship was so, I dunno the word.  Tragic?  Loving?  Reversed-roles?  All of the above, and then some.  My mother had Boarderline Personality Disorder.  Because of that, I raised her.  Not the other way around.  And now I suspect my oldest son has it too, it can be genetic.  I told you, if there was ever a book about my life, it would have to be billed as fiction because no one would believe it.  I'll just say, for now, I've been grown since I was about 6 years old.  I never really got to have a proper child-hood.  With a parent who's mentally ill (high functioning, but still mental), you spend you time "watching out" for them.  but anyway.......


Yesterday was Easter, and I wanted some veggies to go in the crock pot with my pot roast.  When I came out of the store and cranked her up, it sounded like the starter was dragging (I grew up in a family full of car mechanics, I learned a thing or two).  I tried not to worry too much.  About 1/2 mile from home, all the dash lights came on.  The car didn't loose power or stall, thank goodness.  Then the lights went back off again.  Let me interject here, about 8 months ago, I had to replace the alternator (my son did it) and the part was nearly $400.  Anyway, I made it home, pulled into the drive way and shut her off.  For kicks and grins, I tried to crank it again.  Nothing but a clicking sound.  Oh geez.  *sigh*  Here we go.


I thought about it and thought about it.  And I think I'm just going to sign the thing over to my brother and be done with it.  He was a mechanic for over 20 years, certified mechanic.  He got tired of it and went into AC/HVAC and now works for Lennox.  But he's still a damn good mechanic (so is my youngest son, incredible with their hands and tools).  The car goes to him when I'm gone anyway, because it was our mom's, I want it to stay in the family.  Its considered a "luxury" car by the insurance company, which is code for "all the parts are expensive".  And like I told the Mr. last night, when I come home on disability, our income is going to be slashed almost by 1/2.  We've already cut some expenses, but letting the car go would save $100 a month in insurance and gas.  And it really doesn't make a lot of sense to have two vehicles, when neither of us works.  If my monthly pension was going to be bigger, maybe I wouldn't think this way.  But I have to face reality.  One vehicle is all we need.  And its sad and makes me cry.  There's a lady that I work with that lives 1/2 a block from my house, getting to work isn't an issue.  And of course we have the Mr's truck (which drinks gas like a drunk on a bender).  Its a "man's truck" which means its always filthy.  I hate driving it, but it is what it is.   It's just that I feel like the closer I get to not working (and even not living), I feel like I keep having to "give up" things.  Well anyway, it is what it is.  Nothing I can do about it.  But it does make me sad.  On a side note, I also adopted my mom's dog when she died.  Now the dog is 16, deaf, half-blind, has no teeth.  She's so much work just to upkeep, and I've been thinking about putting her down.  There's another thing.  One more thing to "let go" of.  Her car, her dog.  Its like having to let her go, all over again.  I just feel lately, like I'm losing control of EVERYthing.  Everything.  Except what's in the small realm of my little bedroom.  Well, anyway.  It will take a day or two, but I'll pop back.  I always do.  When you raise two boarderlines, you learn quickly how to shield, deflect, and bounce back.   Or they will eat you up and spit you out.  but again, a different story for another day. 


That's all for today.  I feel ok.  The weekend wasn't too bad.  The pollen was really high yesterday and I stayed on the allergy meds and extra prednisone.  But for the most part, all systems were go. 


And even though this is not a craft blog, just sharing a picture of an afghan I finished over the weekend for a friend.  I could have had it done much sooner, but the fall-flare and then the hospital stay set me back a couple months.  But finally dusted and done.  And she LOVED it.  So do I :)
Once again, so thankful and grateful the RD doesn't bother my hands.  Never has.  And that is a blessing!!







Friday, April 14, 2017

Pollen and Prednisone Adjustment

Woke up a second day running low fever and took off work for the day.  So I made a small adjustment in the prednisone.  Instead of every 10 1/2 hours, I'm taking it about every 8 hours.  Voila'!   All better.  Once the pollen is gone, another couple weeks and it should be on its way out, then I can tapper back to 10 1/2  hours.  My face is swollen, and lips are pursed from the swollen cheeks.  But its ok.  Nuthin but a thang.....






My swollen feet are NOTHING compared to arthritic chic's , but since the PE back in November, I've noticed, when I get home from work, my legs are pretty swollen.  See no ankles




I should have taken one in the morning to show the difference in size.  In the morning, you can actually see my ankles.  But anyway, like I said, what I have is nothing compared to some.  And as I've said before, since the lung diagnosis, its almost like the RA is in remission in my joints.  I don't even have morning stiffness much anymore.  Seriously.  My neck?  Doesn't count.  Its so trashed, it always hurts, never stops hurting.  My neck is crumbling from the weight of my head.  What's that say about my head?  


Anyway - Friday!


Ok, going to share one more photo for Friday.  This is Nobska Light, in Woods Hole, Massachusetts.  I was stationed in Woods Hole when I was in the Coast Guard, many many moons ago, and I attended a Christmas party at the light house.  Good memories :)  I was so young (20).  *sigh* 


Ya'll have a good weekend!


Nobska Light
Woods Hole, Mass


Nobska from the water side.







Wednesday, April 12, 2017

Lungs Like Velcro

Woke up with a bit of fever this morning, not feeling well.  Not breathing well, the pollen must be astronomical today.  And it rained last night, people always say the pollen is better after a rain.  But I find that not to be the case.  That is if my pollen-sensitive lungs and constitution are anything to go by....and they are....for me.  I always have felt worse after a rain.  Its like it stirs it up or something.


Anyway - the Pop-Rocks sound that comes up out of my chest and up my throat when I breath in, is loud this morning.


Remember those?  They're still out there, you can get them on amazon.  Not that I would ever buy food items from Amazon, but I've seen them in Cracker Barrel too I think.  But anyway, the "crackle" sound comes up from my chest sometimes, well, most all the time.  Just that sometimes is louder than others.  Its a "Velcro" pulled apart sound.  Sometimes at night when its quiet, the sound is so loud, its hard to sleep.  I've read that prednisone will "bubble" up like that, so it could be that.  My pulmonologist said the same thing.  Either way, annoying.

Not feeling it today.  We'll try again another day.  It does, though, feel like the fever is coming down.  I took an arthritis Tylenol on top of the Norco, its helping.  But anyway.  Be sweet till I get back.


m

Friday, April 7, 2017

Muscle Spasms - Foot Cramps - And Charlie Horses

One of the worst side effects of prednisone, is the muscle cramps.  I get them mostly in my feet, calves, the sides of my lower legs (weird, never ever had cramps that made my feet turn outward), and in my sides and stomach.  The ones in my upper sides (around the rib cage) is EXCUCIATING sometimes.  You know....now that I've had time to reflect and think back on it, I have often wondered if it was a sudden muscle spasm that cracked my two ribs back in October, and not my swollen lung.  As I recall, the lung swell had been decreasing and was not as bad that day as it had been days before.  Is it possible it was my muscle clenching up and popping the ribs?  This one is for you, Dr. G and Dr. Eye, since you'll be reading this down the road.  Here's an article I found on it  CLICK.


I've been taking potassium supplements.  They *help*, but they do not alleviate.  They do help though.  If I miss taking it, omg......its going to be a bad night.  With them, I can manage to get some sleep.  I haven't slept through the night in so long, I don't even remember what its like.  And that's even with taking Tylenol PM before bed.  I miss sleeping all night, curled up under my blanket, in my own big bed.  Well, anyway.  No point in going there, it is what it is, and I have a comfortable place to sleep even if its not a real bed.  many people in the world don't have what I have, and I am thankful and grateful for all the Lord provides.  it could be worse.  It might get worse.  it has gotten worse.  And it can change on a dime, in a moment, literally over night.


My son and grand daughter have been on my mind all week.  Ever since Sunday.  I wish I could change it all.  But I didn't cause it, and every attempt on my part to set things right have been rejected.  When you are dealing with some one who doesn't have the ability to empathize, and barely has a conscious, well, that's a hard thing to break through.  And I've accepted I can't.


So its Friday, lets have a good weekend.  A quiet weekend.  An eventless weekend.


I found this lovely relaxing music, and I've been playing it a lot at the office in the back ground.  So soothing.  I love piano and cello.




C-ya.

.

Tuesday, April 4, 2017

Chest Pain and Other Fun Stuff

I started having chest pain today.  I always have chest pain, but this time is was bad enough it scared me.  I was on the phone with a vendor (I'm a company buyer) and I thought I was going to have to just hang up, the pain was so bad, it was hard to breath.  Pain started right in the middle of my chest.  It subsided quickly, thank God.  It radiated outwards across my chest and even down into my tummy area.  It was BAD.  Its never hurt like that before.  And I started thinking, is this what its going to get to?  Stress?


No details, long story short.  But I had to cut ties with my oldest.  I tried.  I really did.  But he went too far this time.  He hurt me beyond repair.  I will always love him, he's my son.  There's no switch to turn that off, it just happens.  He could become the next Jack the R*pper, and I'd still love him.  But I don't like who he has become, and I don't respect him as a man, nor as a person.  And he will never have the opportunity to hurt me this way again.  I may change my mind, but right now I don't want to see him, I don't want to talk to him, I don't want to know about it.  I pray God blesses his life and I wish him well.  But I'm done.  I've paid long enough.  He's hurt beyond repair, the one person on this planet that loves him no matter what, he's biggest fan, his greatest champion.  Par for the course with a Boarderline.  I know them well, I raised my mother who was a flaming boarderline.  But anyway.  Alienate the ones who love you and treat them miserably, then wonder why everybody stays away.  Until he gets the help he needs, there's nothing more I can do.


I woke up this morning thing about it all.  Something happened Sunday that concerns him and my grand daughter, and I've really thought about nothing else.  So if my pain increase is being stressed induced, then I need to step back and do what I said I would do.  Take CARE OF ME.  My son is almost 28 years old.  Grown man.  My work is done.  My well is dry.  The bucket hit the bottom.  All I can do is wipe off the condensation from the sides and use that to self care.  I saw my son two weeks ago when this all started up again, and I'm afraid that was the last time I'll ever see him.  And the sad part, he knows it too, and doesn't care.  At least he doesn't now.   He will.  Oh, he will.  But it will be too late by them.  But anyway.


Taking some Tylenol on top of my Norco to try and get on top of this pain.  Gosh its never hurt like this before.  This is really painful.  


m