Tuesday, September 12, 2017

A Line Through My Name - I Gave My Self The Injection

Recently here at Huge Ass Engineering Company, a nice lady who's been here for ever and a day, 40 years to be exact, she recently retired.  Her name is Lauren.  We will miss her. 


But, yesterday I was having a conversation with my good friend Leslie, who it happens was Lauren's time-keeper, and she was telling me that yesterday as she was putting in all the labor for her group, she got to lauren's name, and she said "I just drew a line through her name, and that's the end of it".  And I realized that a little nugget someone shared with me years ago is very true.  5, 6 years after you're gone....most people won't even remember who you were.  Especially in a place this big where "new blood" is coming in all the time.  Seriously, I have office supplies older than some of these new people they've hired just out of college.  I'm not kidding.  I have a pair of scissors that have followed me my whole career.  And soon, I'll just be a line-through-my-name.


My last day is 27 October 2017.  My first day was 16 November 1986.  I was 19 years old.  I'm scared to death.  I've worked most of my life. 


Someone recently asked me what was the one thing, the one memory that stands out about my career and all my years here.  I said "how fast it went by".  Unbelievable.


I fell not too bad today.  I wonder if it will last all day.  I don't get "all day feel good" anymore.  Its usually just a few hours.  That may sound whinny, but it is what it is. 


I gave myself my Humira injection.  All by my self.  For the first time.  :)  The pen is not so bad.  I remember now why I didn't like it, it hurts worse than the syringe.  But since I'm going home, and won't have access to a nurse every day, the pen is something me and the Mr. can do.  well, *he* was doing it.  But now that I see how easy it is, I can do it too :)  That's a good thing.




We are getting some showers today.  I suppose this is coming from Irma.  Not much, just some sprinkles and its really cloudy and over cast.  We have relatives in Tampa.  They made it through, and don't even have any damage.  That's a blessing.


30 Years, and just a line through my name.  I need peace about this. 

Wednesday, September 6, 2017

Say It Isn't So - And more old pics

For some odd reason....I've been revisiting some of my favorite music.  This one was my favorite H&O tune.  Timeless.  It came out about the time I thought I was "in love" the first time and got my heart broke.  LOL.  This song was at the top of the charts when I moved to Corpus Christi, Texas.  Me and mom lived in a little bungalow on North Beach, just under the Bay Bridge.  Memories..........






Enjoy!  I sure did  :) 


Early 2002 - 3 years before the RA diagnosis




2007 at the meteor crater in Arizona -
I look at these pictures and think My God what this
disease has done to me....



It Keeps Happening

Morning sick.  I don't understand this.  I've been late  to work 4 days in the last week, and even called in on Friday.  Didn't come at all.  Why is this happening?  It doesn't last long, fortunately.  But it comes on really fast, really hard, and then its gone.  Sometimes I hurl.  But if I concentrate real hard on something else, I can keep that from happening.  But with the pollen, its difficult not to cough, especially in the morning now.  Morning cough is getting worse.  And coughing sometimes kicks in the gag reflex.  And also, if I start to sneeze, even that *may* trigger the gag reflex too, and here we go.  I haven't had fever in a while now, so that's good. 


This morning, it started around 4:30am.  I got up and went to the bathroom for morning "constitution" and got back in my chair.  After about an hour it began to subside and I felt confident enough to take something for pain.  Decided to play it safe, and wait on the prednisone and all the others I take in the morning.  By 6:00, I was much better, and went back to sleep.  Woke up around 7:00 and realized I was going to be late....again.  So I got up and got a shower, and just the movement of getting up and moving around started up the tummy sick again.  After showering and partially dressing, I just sat in the chair for about another 1/2 hour.  It was 8:45 before I pulled into the lot.


I can't do this much longer.  I can't.  I've made a decision.  Phone call or no phone call, October 27 is my last day.  The local department of SSI is downstairs.  I'll stop down there, they already have all my paper work, they're just waiting for me to say "go".  I have to apply for that anyway, so be it.   I have 7 weeks of vacation time saved that I've been working sick to save, that I intend to sell back.  Well, if I have to take a few weeks, then so be it.  I CAN NOT KEEP DOING THIS.  Its too much.


Memory Lane


My brother and I have been going through and sharing with each other old pictures in our possession.  This is one of my brother, my dad, and me.  Taken in 1969.  I was 2.  :)  Boy, my dad was a looker at 34, eh?  Even though he had already began to loose his hair.



Thursday, August 31, 2017

Pains Rains and Hurricanes

Rain rain rain rain.  We're 8 hours by car, East of Houston.  And still it rains.   I contacted my friends in Corpus Christi, they're all ok.  My son, that one that pretends I'm dead, is ok.  But it took getting Aunt Sandra to txt him to find out, he wouldn't answer us.


Rain.  I heard someone say this is the wettest summer we've had in 24 years.  And you know, I remember that summer.  It was the summer before son #2 was born and our a/c went out.  And I remember that we didn't suffer too much from the heat because it rained so much.  The Mr. and I even went to a minor league baseball game that summer, and ended up getting rained out.  that was one wet summer.  but anyway -


Haven't felt real well since I got this UTI.  I finished the antibiotics, but I'm not convinced I'm over it.  Won't go TMI on you, but well, I just don't think this is over.  I'm thinking its going to take another round.  I'm going to wait out the weekend and see if it bounces back on me before I call.  Don't want to take antibiotics unless I have too.  Just don't feel good.  Can't really remember the last time I felt good.  I'd have to look back on my blog posts to see when I had a "good day" last.  I'm sorry if it sounds like I'm whining.  I have a chronic disease, I can do that if I want.  And I rarely whine anyway.  I'm a master at sucking-it-up, and the fake smile.  But sometimes, I just can't muster it up.  Its getting pretty tight in my chest now.  Really tight.


Two mornings this week, I've woke up puking.  So I've taken to waiting until right before I walk out the door to take my meds.  I refunded a prednisone this morning.  YUK!!!  I don't even take my pain meds until I'm sure the sick is gone.  but anyway, tis what it tis.


The rain makes me ache.  The full-body-feel-like-I'm-getting-the-flu ache.  And still, no phone call from personnel.  However, the official inquiry into my case that was started in July by the "outside help" I enlisted, gave personnel 60 days to respond as to where my case is in the process, and that 60 days are up on Tuesday.  I really feel like I'm about to get "the call".  Once I'm gone from here and I can speak more freely about where and whom I work for, I can better explain these delay's and why it takes so long for this to happen.  But for now, I can't.  As long as I'm still employed here, I have to keep things on the down-low.  I blog from work, and they watch what we do, so sometimes I have to speak in code.  :)  Along those same lines, you may recall how the replacement the bosses selected, backed out on us.  Well, they got a brand new list of selectee's on Monday.  And boss 2 called me in and showed a couple of them to me, the resume's are good, one lady has worked here before and wants to come back, so there'd be very very little training.  I hope they select her.  It would be a very smooth transition.  Boss asked my opinion and I said if I was the one hitting the button, I'd select her.  She's a young married mother of 3, she's not in school, and her husband works here in another department.  I think it would be a good fit.  If he's already "hit the button", then our local personnel has to make the official offer to her, once she accepts, it really only a couple of weeks before we can bring her on.  Our rules are nobody starts in the middle of a pay period.   Its all good.


Ha!  just as I was writing this, resource mgt calls and wants to know what my exit date is.  they are doing the budget for 2018.  I just laughed and told her I dunno.  We talked for a bit and she said "considering what you're going through, you have a great attitude".  well, as I've said before.  throwing myself on the floor, crying and clutching my hair "why me!?!"  isn't going to solve a thing, and it will make my heart rate go up.  So no point in having a bad attitude.  A good attitude makes me feel good.  Its one of the few things I still have control over in this hand I've been dealt.  I'm a normal human, I get down some days.  I cry at night when I'm alone.  I cry in the car when I'm alone. I cry when I think about the fact that I probably will not live to see my grand babies grow to adults.  But then I dry it up and go on.  I can't change it.  I didn't cause it.  The only thing I can do at this point, is make my life as happy and as stress free as I possibly can.  And I only want people who want to be here in my life, at my party.  It is what it is.  Only a miracle from God can change this.  And it can!  He can do it if its His will.  He can change it "just like that".  But I feel at this point, after all these years, if He were going to perform a miracle healing for me, it would have happened by now.  That's not to say it won't at this point.  And the Lord knows my heart.  But I also have to prepare.  What's the old saying "expect the best but prepare for the worst".  That way, I'm ready either way.  There are those who think that being a Believer automatically qualifies us for healing and if we don't get healed then its our fault and we don't have enough faith.  BALONEY.  That's not what my Bible says.  And I don't want to go any further with that line of thinking.  Those are private thoughts only for me.


So here I sit still, looking out my huge window facing the busy street out front.  Watching the rain pour down.  Watching people crossing the parking lot with umbrellas.  Wondering when the rain will ever stop.  I'm SICK OF RAIN.  All I want to do today is go home and watch knit and crochet videos on Youtube.  Can't wait to reveal this "Cameo" afghan I'm making for the grand-girlie!!! SQUWEEE!  It is awesome!


Ok, so hopefully where ever you are, you're not in the line of fire of this storm and you're nice and dry.
Ya'll be sweet.

Thursday, August 24, 2017

Happy Birthday My Friend - My Sister In Sickness

Today is Cass's birthday. 


HAPPY BIRTHDAY GIRL!!


Stop by here , or  here, and wish her a happy birthday.  She's going through a lot, health wise, at the moment.  lets lift her up!  hang in there hun!  We're praying the Embrel will do the trick and get you back on solid ground again.  Much love and gentle hugs, and a dang good happy birthday to you!!

Monday, August 21, 2017

Still Here

I've been a bit busy this week.  Left lung still tender, but very well controlled.  Its at its worse at night.  Hiccuping feels like a stab believe it or not.  And actually, the pain I now feel could just be a "new normal" with the left lung.  I mean really now, I'm even now pushing the prednisone back up to every 11 hours.  Seriously!  I actually forgot yesterday to take it on time, that's normal for me, and was almost two hours late before I started getting the "million-bug-march" feeling inside my body.  That being said, I'm going to do every 11 hours for a week or so, and see what happens.  If I don't start running fever again, like I usually do, then I'm going for every 12 hours again.  but, still have to get through the fall-flare, and the pollen just started, it hasn't hit its stride just yet.  That won't happen until late September early October.  Wouldn't it be wonderful if I could get back to just 10mg a day!!??  maybe the moon face would go away.  maybe I could lose some of this belly.  Maybe I might actually look normal again, instead of like Joseph Merrick (God rest his good soul).


Maybe. 


Just haven't been myself lately.  If I actually still had hormones I'd say I'm kind of "pms'y".  Bluesy, and grumpy.  Probably the prednisone.  Yes, I actually do blame everything on the prednisone.  Maybe we could achieve world peace if nobody had to take prednisone.  I'm just sayin....


I watch knit and crochet video's and get all excited and want to make something, and then the feeling goes away.  My grand-girlie has a birthday on September 11, and I'm only 2 squares into her Cameo Afghan (ohmygosh it is going to be so pretty!  All pink and black, like Chanel).  So 2 down about 18 to go.  It is a very quick square to make.  If I set my self down and focus, I can crank out a square in about an hour.  I just get in my chair and think "I don't wanna".  So I put in Pride and Prejudice (the Colin Firth version, thank you) and veg in my chair watching Mr. Darcy trying not to love Elizabeth, on the dvd.  And laughing at Mr. Collins and his silly self kissing Lady Cathrine's butt.  Gosh I love that movie.  The Kiera Knightly version is a good one too.  It has Dame Judy Dench as Lady Cathrine, and she does it so well!  I love that scene where she accosts Elizabeth trying to get her to promise not to become engaged to Mr. Darcy, I know it by heart, I can speak the words for the entire scene.  "....scandalously patched up marriage.  are the shades of Pemberly to be thus polluted?  Now tell me once and for all....are you engages to him?"   I love that scene, you go Judy!  Judy Dench....how bad can it be.  She's excellent.  Next to Helen Miren.  but yeah, I've lost my craft mojo, and I can't find it.  I have a gift certificate I got for my birthday last month, to the local high-end yarn shop, and its still in my purse!!!  Only a knitter/crocheter will understand the depths of how incredible that is.






I'll close off today.  Just not feeling it.  Must be the eclipse.  Or the prednisone.

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 far....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,


Tootles!

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.

Tuesday, July 25, 2017

RA - Lung Take Two


Ok where was I....oh yeah.  I was going to talk about what the doctor said at the walk-in when I went for an xray, but looking back, I see I already told you about that.  What I didn't say was that Young-Doctor asked if I would give him permission to review my test results from the week before when I was in hospital.  I said sure why not.  Another set of eyes never hurts.  This was on Monday, week ago yesterday.  So on Wednesday, two days later, I get this phone call from them saying they had set me  up for a CT the next day.  "What for?"  She, the nurse, said that the doctor wanted one done so he could compare.  I told her, seeing how I just had an HRCT 8 days previous, unless I have some sort of flesh-eating disease, I highly doubt there are going to be many changes for him to see.  My doctors are on top of this.  All I wanted was an xray, and that's what I got, thanks.  I don't see the need to go through the expense, I doubt my insurance would pay for another one that quick.  Especially when the last one was an "HRCT" not just a measly old "CT".  No.  I called the hospital and canceled.  They were kind of put out.  Sorry, about that.  I'm not putting myself through the expense nor the procedure just so some doctor who is not on my care-team to have a looky loo at something he's never seen before, probably.


Anywho-  so umm yeah, I'm coming  up on two years now since ILD diagnosis.  I remember that day...."2 1/2 to 4 years depending....."  In my own, medically-uneducated-opinion, gauging it by comparison of how I feel today, to how I felt just a year ago, I think I got another year in me.  Maybe.  We all know this could change on a dime, in a moment.  I know I can feel great right now, and 10 minutes from now, feel like I got run over.  There's no rhyme or reason to this, and it is so unpredictable, what's the point in trying.  That all being said, if I can stabilize now that the clots are gone, and just stay where I am right now, I can make it a while.  I still have hope.  Its when I sneeze, or cough, or take a deep breath, that I'm reminded that my lungs are turning to stone.  When I eat, even the smallest meal, I'm reminded.   Eating is not the pleasant experience it used to be.  My belly is so big, it is pushing up into my lungs, even when its empty.  When I saw Dr. Eye, my rheumy, last week, that's the first thing she noticed....


Dr. E - Wow! (pointing at my belly)


Me - I know!!!  I feel like an alien!  (And she begins gently pushing on it)  I really think I have a hernia sometimes.


Dr E - No I don't think so (now she's examining my legs), this is fluid.  There's some fat too, but mostly this is fluid.


Me - Its bigger at night by the time I go to bed.  I bloat during the day.  When I get up in the morning, my belly is almost normal, almost.  And my legs, are 1/2 the size they are by now, when I get up.


Dr. E - mmmm....yep.  This is fluid.  And its all due to the prednisone.


Fluid meds, out of the question.  I already battle leg, hand, and foot cramps at night due to the prednisone, and that's WITH potassium supplements.  Diuretics are known for depleting potassium and cause leg cramps.  I'd never be able to sleep.


I look deformed with this huge belly, little bird legs, normal arms, and a prednisone moon-face.  I've often wondered how many times people look at me and wonder "she's a little old to be having a baby!"  ah well....it is what it is.  I used to be cute, I have pictures and witnesses to prove it.


But as for the lungs, I lost a ton of ground with the PE.  I'd love to go back to where I was before that, but I know that will never be.  Sometimes it crosses my mind before I go to sleep at night, maybe tonight is the night.  Maybe I won't wake up this time.  Well, I'm ready when He's ready.  He and I are ok, we're tight.  I've got a couple of pets on the rainbow bridge waiting for me to cross, and I've got my loving grandmother and my mom waiting for me.  Its going to be ok, even if its not ok.
And there are the RA eyes.  They run like a poodle.


In other news


Did I tell you the Mr. was cutting the grass, the mower threw a rock and busted out my back window in my car?  That happened two weeks ago, the day I got out of the hospital.  Anyway - got it to the glass replacement place today, took a little bit to scrape up the money ($220).  I only have liability coverage since the car is paid for, so its all on me.  So I got it to the shop today, I've been driving the truck ( I call it the tractor), and on the way back to work (The Mr. drove it to the shop and I picked him up), I get a call from them saying that the window had arrived.  However, bad news, the box has the right part number on it, but the wrong glass in the box.  There was some mix up at the warehouse, or distributor or where ever they order them from.  So its going to be tomorrow before she's ready.  sigh.  well, anyway.  it is what it is.  I'm just glad to be getting it back.  Seems like every 9 months or so, something happens and I'm bumming rides. 


Well, lunch break is over.  Time to get back to work.  Ya'll be sweet.


Tootles!!


PS...I just stumbled on another really good "Chronic Blog" .   Ya'll hop on over there and give her a look.  Chronic Mom

Wednesday, July 19, 2017

RA-Lung Disease.....How I got here - Take One - UPDATED

Updated - I came back because I thought it important to mention the fact that when my ILD was diagnosed, my rheumy immediately took me off the methotrexate.   "....it scars the lungs over the long haul...".  The RA does a number on them in and of itself, and the mtx just makes it worse.  Damned if we do....damned if we don't.  Did mtx cause my RA-Lung?  Combined with what the RA does to them, yes.  Yes, the mtx helped my symptoms, I noticed a difference in my pain level when I stopped it.  But had I been told that mtx scars the lungs, I'd have never taken it.  If you are reading this and you are on methotrexate, please insist on a chest xray every year.  Even if your doctor says its not necessary.  Believe me, it IS necessary if you have RA and you take mtx. 


Back to our regularly scheduled program:


I was reading through an RA page on Facebook and came across a question someone asked about chest pain, and shortness of breath with RA.  I was kind of taken by how blase' (at least it seemed that way to me) folks were about it, people with RA.  Which, to me, is kind of scary.  But you know...I was there one time.  I had no idea about the possible organ involvement.  And when I did find out, I was pretty "blase'" too.  I'm embarrassed to admit, I was also in that dream-world of "it happens to other people".  Then it happened to me. 


And I don't think I've ever dedicated a post to that time.  That horrible, scary, sick, time.  I was so sick, so close to death and didn't even know it.  I thought it was costochondritis, and just let the pain (and fever.....duh) go.  This was in early July 2015.  I kept thinking "eh, I have a rheumy appointment August 10, it can wait.  Just one more thing I gotta learn to live with".  HA!!  little did I know.  I was so stupid.  And my stupidity almost killed me. 


Dr. G and I put our heads together and we came to the conclusion that late one night in June, I aspirated stomach acid.  It was bad enough that I almost passed out from coughing and not getting any air, every time I coughed, it burned like fire coming up, and by the time I got to a place I could breath, I was out of the bed and lying on the floor.  I thought I got it all up.  I didn't, and didn't think anything more about it.  Dr. G said that's what caused the infection.  Dr. Eye, my rheumy says the RA lung was probably already simmering ( I agree, I'd been having tiny little chest pains for about a year) in the back ground and the infection boiled it over, so to speak.  And of course, once the ILD was boiling, there's no turning it off.  Its a done deal.


Anyway- The pain started and the fevers, then it got to the point it was very painful to even turn my upper torso.  And yet I kept saying "eh, I have a rheumy appointment in a few weeks, its all good".   So technically, the stomach acid I didn't get up, was boiling away at my right lung.  By the time I got to the rheumy on 10 August, two months had passed since the late-night-aspiration.  She took an xray and I went back to work.  4 hours later, her nurse called me, frantic.  Telling me they had already called Dr G's office and sent him a copy of the xray, and I had "walking pneumonia".  I started to shake.  Oh shit.  What the hell have I done to myself.  I hung up and called Dr. G's office.  This was a Friday, and he was out.  They did get the  xray and the report, and the doctor on call had sent me an antibiotic scrip to my pharmacy.  I needed to start them immediately, and come in Monday to see Dr G.  Friends, the look on his face when he walked in the exam room scared the living daylights out of me.  He gave me the full-load on what was happening, the collapsed lung, the huge infection, the huge plural effusion that would need draining (WHAT?), I just started to cry.  And then I remember that night I almost choked on stomach acid.  He just shook his head and said "yep, that will do it."


Many many xrays, weeks of antibiotics, I was in Dr. G's office at least once a week and sometimes more, for two months, a second plural effusion and a visit to a pulmonologist, Dr. H. At this point, we were now in November 2015, still on antibiotics.   He looked at my records and the labs that were done on the fluid drained from my lung and said, "yes, this is RA Lung.  I know you are still on antibiotics, but you need to get back on the Humira, and I think that will stop the effusions"  he was right.  It did refill just a bit, and Its still there today, but not enough to warrant the expense and trouble of another thoracentesis.  He also said, very matter of factly, that RA Lung is considered terminal, with average life span about 2 1/2 to 4 years, depending on how quickly I progress.  I was numb.  I went back to work and began to Google.....and cry.  Everything changed, in that moment of time.  Suddenly, I was that "other person" that these things happen to.  My priorities changed in a nano second.  I can't remember which doctor said it, but I was told another week to 10 days, and the infection would have killed me.  I almost died.


Today, I still have the chronic effusion, and Dr G said the HRCT I had a week ago is showing that its a little bigger.  So when I see him next week to talk about and Upper GI, we're going to talk about another thoracentesis.  I just shake my head at the thought of that. Yes, I've been through worse.  But having what is basically syphoning fluid from my lung (like stealing gas from a car), and going through my back, with nothing but a local deadening of the skin....its not the worst thing, but its not pleasant.  *huge sigh*  I don't want to do it again.  Tears come to my eyes just thinking about it.  But if it has to be done, it has to be done.  But I don't have to like it.


Also, in healthy people, the lungs generally lay across the diaphragm.  My right lung does not.  It curls backwards in on itself.  Dr G says that permanent damage and scar tissue.  My right lung is FUBAR.


I'm tired now, so I'll end for today.  But we'll pick this up tomorrow because I want to talk about this crap at the walk-in-clinic from Monday.  It all fits together, don't worry.  I'm not going to pull you down a rabbit hole.  :)


Till then, ya'll be sweet





Monday, July 17, 2017

Crying just makes it worse

So Saturday was my birthday.  Technically, in some places on the globe, Saturday is the last day of the week.  Well, it was the last day of the week from Hell.  It just got worse after I got home from the hospital.


Everything was all cool till Wednesday I went to get in my car, and realized that when the Mr. cut the grass, evidently it threw a rock at my car, and shattered the back window.  $400 or there abouts.  Perfect, I'm buming rides again, or driving the tractor (the Mr.'s truck).  *sigh*  Then Saturday came.


My friend-girls took me out for Chinese Friday night, wonderful!  And they loaded me up with yarn store gift cards (they know what I like).  Then Saturday.......(It was my birthday)


I had to go to my friend Pam's house so she could give me my Humira injection because dummy-me forgot it Friday so the work-nurse could give it to me, and of course I forgot to take it with me to the Chinese place so Pam could do it there.  So I had to go to her house.  As I was leaving, I fell.  On her concrete drive way.  I fell hard.  Nobody was around, her curtains were drawn, nobody saw me.  And I just lay there for a minute to catch my breath.  My right knee felt like it was on fire, and my left lung took a punch too.  So much so, that by today, I figured I was wrong about the lung, and maybe I'd actually cracked another rib.  So I zipped (read:  bummed a ride) across the street to the walk in clinic.  No cracked/fractured/broken ribs.  Dr. there said they were really bruised, and I figure I was probably right in the first.  When I landed on my left side, it "accordianed" my lung (I felt it, it hurt), and now my lung is angry and flared up.  Hurts to breath.  hurts to cough, hurts to cry, hurts to talk.  Damn the only thing that doesn't hurt is to pee.  Sorry, I'm just really down today.


So walk-in-clinic-doctor is more concerned with what he says is a "mass" on my right lung, and "when was the last time  you had a CT?"  I started to laugh, and told him about the HRCT, the Echo, the EKG, the Arterial blood draw, the stress test, just to start, that I had just a week ago.  He was staggard.  Dr. G didn't say anything about a "mass".  He *did* say that the chronic plural effusion I've had for two years looks like its bigger and we may have to address another thoracentesis (Oh God please no, not again!), but Dr. G is at a conference in a land far far away this week, and I can't get to him until next Friday.  SO!  I'm not going to worry.  If Dr. G, and my cardiologist saw it, and were not concerned enough to "get right on this NOW", then I'm ok.  I really think its probably the effusion this young turk doctor is looking at.  And he IS young.  But anyway.  So, yeah, I fell and skint my knee up, and threw my left lung into a mega flare.  Its not over yet.........


Saturday evening - I get a snarky txt from son #1.  Another of his typical accusatory txt, accusing us of something we didn't do.  Let me put it short and sweet.  Dept. of Human Svc. Child Support Division, has finally caught up with him.   They sent the letter to my house.  Mr. called son #2 because we know they talk now and then, trying to get a mailing address for him to forward it, this was Tuesday last week the day after I got home from the hospital.  So Saturday, I get this txt saying that "I'd really appreciate it if you would stop opening my mail and discussing my private business with other people....blah blah blah".  I'd had enough.  usually I would not respond, but this time I did.


I told him, first of all, the damn letter is sitting right here, unopened, we never opened it, wouldn't do that.  Second, we didn't discuss his personal business with anybody other than his brother, and that was to attempt to get an address.  I  have enough of my own business to deal with, don't have time to be all up in your drama, been dealing with your drama since you were 12.  We don't even know where you live.  and further more "since you kicked us to the curb, remember, you don't "associate" with us, do me a big favor, don't ever text me again unless its to say "hi".  I  have nothing to discuss with you.  You made this bed, lie in it."  So then he text back trying to be the "good guy" so I look bad (Can you say "borderline"?  I saw my mother master that one), and he got all nice and ended saying God Bless and he was just "going by what he heard (and thought the worst of course because his dad and I are so evil!)  oh puleeeeeze.  Keep your fake humility!  You cuss me like a cur dog to my back and on facebook but God bless me???  I can NOT believe I gave birth to this child.  its like he's an alien.  Oh, he also responded ( I guess in response to my saying we don't know where he lives) "you and dad drove out here 2 years ago mom"  I said "Damn son, I know what city you live in, but you moved houses a month ago!  I can't just put your city on the envelope, bless it, and hope it gets to you!"  Yes he's my son.  And I will love him till I take my last breath, and my heart will never heal from the hurt he has caused me.  yes, I'm in a bad mood.  Sorry.


I've hurt for two days, I can barely breath, my youngest son who's my rock star, forgot my birthday, AND!!  To top it off today, the air conditioner in my house went out today, and its nearly 100 degrees Ferenhite (or however you spell it, I don't care at the moment, you get the picture).


And lastly, the replacement for me that was hired.....she backed out.  effing great.  wonderful.  fabulous.  If I drank, I'd have one today.

Friday, July 14, 2017

A Heart Scare - A Short Hospital Stay - Tummy issues worsen - Is this all connected? -UPDATED

Saturday afternoon, the 8th July, that circle in the middle of my chest I've complained about before, hurt.  <-----understatement.


It started slowly, and over about a minute, the pain built to a 9.  I haven't had 9 pain since my DVT.  It stayed there for at least 3 minutes, then just as I was about to dial 911, it began to subside.  Scared the begeebus out of me.  Also, while it was happening, I reached for a pain pill, and swallowed that with a drink water.  As the water was going down, when it hit that spot that was hurting, my pain went from a 9 to a 14.  Once the water and the pill hit my tummy, it went back to just the 9.  The pain was excruciating.  Its a new level of pain, its never hurt like that.  When it was over, I was spent.  While it was happening, I couldn't speak, I could barely breath.


Monday morning, soon as I got to my desk, I called Dr. G.  Lucky for me, he had a cancelation.  So I got there at 2:00, and described what happened.  So he says that he wants to run this test and this test and this one and this one, "you want to let me just put you inpatient?  It would be much faster and probably cheaper".  So I checked in Monday afternoon.  And I wasn't even comfy in my bed when they came and got me for the first test.  An HRCT.  been there done that.  Then the worst part happened.  After I got back to my room, a nurse came for an arterial blood draw.  Let that sink in.  ARTERIAL blood draw.  At least she was honest with me "I won't lie to you, this is going to hurt.  I have to go all the way to the artery, and that's deep."  I think I let an F-bomb slip once.  And I cried, and the Mr. held my other hand.  I hope I never have to do that again.


The heart stress test wasn't too bad.  I've had that before.


So, end result, my heart is fine.  I didn't have a heart attack.  Dr. G said "but we're not stopping.  I want to find out what is cause all this pain.  So if the heart is fine, next step will be an Upper GI to check the esophagus" .  So that's the next thing.  And we will do that outpatient.  I have to make a follow up with Dr. G. and I'm hoping that G.I. Associates can get me in there in the next couple weeks, or sooner if possible.  I'm going to GI Associates, because they will put you out to do it.  I need that.  Insurance will pay for it, I have a very sensitive gag reflex.  I can't have them sticking tubes down my throat and I'm awake.


More good news too!  The lung blood clots are absorbed! :)   Due to infarction, I don't get the benefits of breathing better, but the clots are gone.  And THAT is a good thing.


Lungs are trashed.  I knew that. 


And!  I don't know if I brought home a new bug from the hospital or what, but omg....the tummy cramps and the IBS with D and N and sometimes V.  The reason I suspect a bug is because the Mr. is having same symptoms.  I don't know, hopefully this will run its course in a day or so.  I feel a little better than yesterday, but its still touch and go.  And we don't move too far away from the bathroom.


I haven't made a full day this week.  And as usual when I leave the hospital, my arms look like I'm a crack head, I got stuck so many times.  Well, ya'll have a good weekend.  Tomorrow is my birthday :)
My friend-girls are taking me out to dinner tonight, and the thought of it is not pleasant, but its Chinese so I will probably just settle for some egg drop soup.  You know that stuff is magic, and will cure what ails you.  Its the big 5..0 !  geez-louise......50.  What happened to 18???  it went by so fast, I really didn't even have time to enjoy it.   Till next time....


Ya'll be sweet.


Later that same day.....
I went across the street to the Chinese place and got some egg drop soup.  Miracle liquid in a bowl.  man my tummy feels better!  What is it in this stuff??  I'm going to have to do some research.  Too bad it won't cure RA, but dang if you have some tummy problems, egg drop soup is the bomb!  I feel 100% better.

Friday, July 7, 2017

Funeral For a Friend - Life goes on

We laid to rest today, one of my oldest friends.  Oldest as in time, not age. 


She and I met in 6th grade, 1978.  We were not in the same home-room, but we had a class or two together, and there was always recess.  Then 7th grade came, twice the number of class changes.  We still only had a few classes together, but she and I and another girl, Lisa (whom we also met in 6th grade), became a clique.  We were the 3 musketeers!  Not really, but the 3 of us were welded to the hips.  We passed notes between classes, ate lunch together, talked about boys, and dreamed about a future.


She came up rough with a father who drank way too much, and loved way too little I think, and a mother who worked her fingers to the bone to make up the difference and keep the engine running.  Long story short, life just beat the crap out of her.  Like most of  us, it wasn't all bad, she raised a couple of beautiful kids too.  But this last year has been the worst of her life.  An old story, husband has a mid-life, leaves wife of 30-something years for a younger woman, nasty divorce ensues, battle lines drawn, punches thrown, bail's posted, until finally it was over.  And she drank.  More than she should have.  And she stopped caring I think.  I dunno.  But she was getting better.  Learning to live on her own for the first time in her life, a great circle of friends who loved her to pieces and watched over her.  Just when we thought it was over, her brighter days were coming, she had even been talking about dating again.  Just when you thought it was safe to go back in the water, tragedy.  Her mother passed away suddenly, unexpectedly.  Her last solid rock, was gone.   Less than a week later, my friend was found passed away in her apartment.  And apparently passed quietly in her sleep.  It was the last straw, her little heart just couldn't take any more. 


She grieved her self to death.  Over a sorry rat of a husband, and a loving mother she couldn't live without.
My friend passed away.  And I am sad.

Tuesday, July 4, 2017

A Passing

My very good friend and someone I have been friends with since we were 12 years old, passed away yesterday.  That's all I can say about that right now.  Rest in peace finally my dear.  I will never forget you ever.

Thursday, June 29, 2017

Tummy Issues.....Still.

I missed work yesterday.  Tummy issues keep coming, never ending, only a break of a few days, then its back to IBS with D....and sometimes N too.  **sigh**


I'm not in a good place today.  But anyway.


Sent of a letter of inquiry Tuesday, to the home office personnel administration, asking for their help in getting my package pulled from the bottom.  We'll see.  I think the official offer was *supposed* to be made to my replacement, yesterday.  I wasn't here so I dunno if that happened, and I really don't want to ask the boss, because I've pestered him enough about it.  It will happen when its time I guess.


Going to sit here today and just nurse my queasy belly.  Nothing to see here.....


Lets enjoy something funny.  One of my all time favorite shows, without the original 3, it will never be the same, the BBC should just give it up.


The Best of Top Gear Best Bits and Funny Moments



Tuesday, June 27, 2017

A Good Laugh For Today - My Story and I'm Sticking To It

You know what's embarrassing and yet extreamly funny?  When you are confident you're alone in the office, and you already have bowel issues anyway, and you cut a big one.  Then you hear the bosses chair move in the other room, like he's stifling a laugh.  And suddenly it hits you, "I think he heard that...how could he not, it was a 6.5 on the Richter scale! Busted!"   You just have to play it off.  You know?  :) :) :)  Hey!  Don't act like you never cut a big one, its the meds ok?  That's my story, and I'm sticking to it.  Even as adults....breaking wind is still funny.  He got up and went to a meeting, but he could barely make eye contact.  MWAHAHAHAH.....he walked out and I started to laugh uncontrollably.  Ah well....if that's the worst thing I have to deal with today, I'm in pretty good shape.
Ya'll be sweet, and don't hold it in, it hurts and you might rip something you need. 

Monday, June 26, 2017

Doesn't Make Sense To Wait So Here's My Good News!!

Since nobody in my family knows this thing exists, nobody knows I blog at all, it doesn't make sense to keep you in suspense.


My wonderful good news is........My DIL is pregnant!!!  I'm gonna be a Meme again :)  We are SO HAPPY!!!  DIL has had some female issues in the past, so they wanted to wait until she is firmly in 3 months before they let the cat out of the bag, and they swore us to secrecy.  But you guys wouldn't know me from Adam's house cat if you saw me on the street.  I keep my privacy held very close, its very important to me.  So why not share?


When they told us, I just started to bawl like a baby because I just knew they'd wait several years and I wouldn't live to see this one.  So yes, it is reason for much celebration!  My son had been saying he didn't want any, and they would wait no less than 5 years.  HA!  In actuality, they have been trying since they got married a year and a half ago!!  To the point, according to my DIL's mom, they were beginning to get worried because it was taking so long.  Little sneaky snakes!  :)


Another grand-baby.  ahhh....grand babies are so much more fun than kids.  You can spoil the crap out of them, then send them home!  mwahahahaha.   :)  They want a girl, I don't care.  Long as its healthy.  She is due in January.  January 19th.  Now I have something to really shoot for.


I've been praying lately that the Lord would let me have one more Christmas, now I just want to make it to February.  I think I can.  I really think I can.  Especially since I'll be home retired by then.  happy happy happy!


I gotta get my craft mojo back!  Many things to make.  Like the bad guy on Frosty The Smowman.  I'm gonna be busy busy busy!


Sweet!!!

Nothing New To Proclaim And That's A Good Thing

Now that I've adjusted the prednisone again (I'm now taking it every 10 hours instead of 10 1/2, that seems to be the sweet spot, as long as I remember that is, that's a huge part of the problem....I forget), the fever is leaving me alone.  On Saturday, I was supposed to take it at 1:30pm.  At 3:30 I was sitting in my chair, and suddenly (and I do mean suddenly), I felt like I'd been run over and I thought, "ohmygosh! why do I feel so bad.........oh."  I looked at the clock and realized I was 2 hours late on the pred.  It took a full hour to kick in.  I'm researching little timer options. 
I don't wear a watch, never have, ever.  I know that's weird, most people do.  But I don't.  I've never been much of a "jewelry" type girl.  I always loved, and still do, a pretty pair of earrings, especially nice hoops.  I wore sterling silver hoops for decades.  I haven't even worn a wedding ring in probably 25 years or longer.  So getting one of those fancy things people wear these days on their wrist, not happening.  To me, wearing anything on my wrist makes me feel the same way some feel about wearing turtle-neck sweaters.  It bothers me, and I find myself pulling on it constantly.  So, I'm open for any suggestions.  Some have said, set my phone, and that is actually a viable option.  But I don't always have my phone with me.  I guess I'd have to make allowances for that.  But anyway, I'm researching and looking around for some type of "reminder" buzzer/ringer/knock on the head whatever it takes so I don't forget.
Moving the rest of my belongings out of the office today.  Making room for the new girl coming in.  Of course, we already hit a snag.  The guy in personnel didn't do his part of the paper work, so we're already late.  I was hoping they'd make the offer today (it has to be all "official" and sh*t), but it looks like that might not happen until later in the week.  No worries.  None of this has gone off without hitches so far.
Felling ok today.  DID NOT want to come in this morning.  Its getting harder and harder, to do this.  But soon enough....soon enough.
And!!! On a happy note, by next week, I should have some good news to share with the world.  Some really really good news.  Something that will change my life again, it directly effects me, but in a good way.  So there's a bone, now you'll have to wait! 
So lets go "do" Monday.  Lets have a good week!
Tootles!

Thursday, June 22, 2017

This Isn't Funny Anymore - or - I've Lost My Mojo - UPDATED

Kind of depressed today.  I guess getting up 5 times in the night to go pee, means I've not slept well.  Woke to a bout of nausea, that blessfully didn't last long.


I don't really have morning stiffness anymore, not much.  You've heard me say that once the organs became involved, its almost like its in a mini-remission everywhere else.  One thing, no two actually, but one thing that lingers is the morning "blah".  That first hour or two when I wake up and think, "I can't do this today.  How will I get through the whole day?  shut up and get up and get in the shower, move it!"  The other is fatigue.  Mind-numbing fatigue.  You know what I speak of.  Generally, after a couple hours, and I've had a hot shower (which wipes me out, and it takes forever to get dressed afterwards), I begin to feel more myself.  Ok, yeah, I can do this.  Again.  For a few hours.  But no promises!


I'm at my peak between the hours of 10:00am and 3:00pm.  Before and after that, I'm pretty useless. 
I don't speak of it very much, because this blog is about my journey with this disease.  But most everybody knows I crochet and I knit.  I learned to crochet as a kid when I was about 11 years old, in 1978.  I didn't learn to knit until about 5 years ago I guess now, and I taught myself from youtube video's.  Down through the years I've hooked many many afghans.  Now, with all these new lovely hand dyed yarns that, back in the 70's, where not available to us, I've even ventured out and made some clothing.  Seriously, ya'll remember all those hideous acrylic crochet flower-power vest in the 60's and 70's?  YUK!  But its true to say, even acrylic has come a very long way, and the quality and large range of dyers we have to choose from, has made it such a pleasure.  I love that I can do this. 


Because now, it has kept me sane, in a world that sometimes seems against me.  And I have to confess, I've lost my craft mojo.  I barely pick up a hook, or needles these days.  You may remember I mentioned that back in the winter, I spent some of my bonus on a new recliner to sleep in.  I moved into my yarn room, so every night I sleep surrounded by yarn, and crochet/knitting notions.  I have a massive pattern book collection (several hundred I'd guess), some are several years worth in subscriptions, some I've bought as stand alones, and I even have a copy of each of Doris Chan's books that are now out of print.  And as I was getting dressed this morning, I looked all around me and thought "there is NO way I will work my way through all this yarn before I go." 


See, the plan has been to just start making blankets.  Grab a random ball, make it a giganto granny square, or some other easy pattern, when that ball runs out, grab another, and just keep making them till I run out.  I have a stash of "the good stuff", and I've got a couple of beautiful shawls on the hook and needles to use that.  I don't use "good stuff" for afghans that are going to get some serious use.  Ok, point being, I think its time to face reality, and begin a search to see if maybe I can donate some of it.  My pattern stash alone, all total, I'd say has probably cost me in the area of several thousand dollars.  I had thought I might open an Etsy shop when I'm retired and sell them.  But I'm beginning to think that's probably not going to happen.  That makes me sad.  I just don't think I'll have the where-with-all to run it, all those trips to the post office.  I dunno.  I have several that are no longer in print.  One of Doris Chan's, the hard cover edition has been listed on amazon for over a thousand dollars!!!  and I have that one!  Its not hard cover, but still.  out of print is out of print.


I have to make a new plan, I guess.  One more thing.  But I sit in there at night and think "I really need to work on this, or I really need to finish that..."  And I don't.  I'm so tired by the time I get home, that all I really want to do is drink a fruit smoothie, do our daily bible study, then loose myself in Netflix or on youtube (I've been binge watching The Tudors.....again:) , I've lost my craft mojo.


Maybe a trip to the LYS (the local yarn store) and just get a little something like a new needle I don't have.  Maybe that will re-start my engine.  I wish they would hurry up and process me.  I'm ready to be at home permanently. 


Well anyway - I'm having dinner tonight with two friend-girls, if the weather permits.  We have a tropical storm "Cindy" blowing through the area today and tomorrow.  We're meeting at The Gumbo Pot.  I don't like gumbo, but I hear their fried shrimp po-boy's are to-die for.  So that's what I'll be having.  I don't like Cajun food much at all.  But I do love a good shrimp creole over rice, New Orleans style.  I like shrimp any way you make it (some people call them prawns I think).  Now I'm  hungry.


Have an appointment with the throat doctor this afternoon, getting my tube looked at, see if we can figure out why swallowing is so difficult sometimes, even liquids get stuck now and then.  Yes, I've done some Googling and I've researched a couple things, but I no longer try to guess this thing, because the last couple times it has surprised me.  So we'll see.


Be sweet.


Later that morning.....
Dr. G's nurse just called to check on me.  I **heart** you Dr. G!!  You are the kindest, most caring doctor I've ever had, even though I still think you've hid some things from me.  But I forgive!  And I wouldn't go anywhere else!
Even later that same day:
My replacement has been selected!!!!!!    Yipeeeeee!!!  One more step in the process.  Now, the next thing is to get a fire lit under the home office on my paperwork. 

Wednesday, June 21, 2017

Tummy Issues Continue On And A Recipe of Sorts


Oh the tummy issues.  **sigh**  Last night, I managed to make a nice dinner after work, just pushed through and leaned on the counter top a lot.  I made a gorgeous potato/ham/spinach/egg and cheese frittata, with the potatoes set on the bottom as the “crust”.   Ohmygravy!  You should make this. 

Anyway – I went to sit in my chair while waiting for the frittata to rest and the eggs to set.  Within 5 minutes, I was so sick at my stomach, with shooting pains all across my belly, I had to go to my bedroom and get in bed.  I called the Mr. to bring me a cold wet towel.  I was trying hard as I could not to throw up because I’d taken meds.  You don’t want to throw up your meds.  The taste, then there’s that whole “now I’m short” issue.  So he brought me a cold wet towel and I covered my forehead with it and turned out the lights.  How I fell asleep I have no idea, with that kind of “sick”, but I did.  45 minutes later I work up.  Belly was fine, and as each minute passed I got better and better.  Within a few minutes, it was as if it never happened.  Forrest Gump disease……you just never know what your gonna get.  I felt well enough to have a small wedge of the frittata.   And I left it at that, drank some water, took some Tylenol PM and went to bed.

This morning, its baaaaack.  Not to the degree of last night, but I’m queasy.  It comes and goes like this.  For 30 or 40 minutes, I’ll feel like I’m going to hurl and its going to land across the street.  My skin goes white and pale, I sweat, and the heart rate goes up.  Then it slowly begins to wane, and before you know it, its gone.  Like it never happened.

I’m out of DanActive and this is day two, so a trip to wallyworld is in my day at some point.  That will help.  A lot.  I didn’t have one yesterday, so that could be why I’m having the issues.  You know I swear by this stuff.  Seriously. 

Ok, here’s how I make my frittata.  It feeds me and the Mr. at least two meals each.  A portion for dinner, then left overs.  I make mine in a 10 inch skillet that has a lid.

Slice thinly about a half cup of onions and put them in the skillet with a few drizzles of olive oil (or your oil of choice).  Cook them on medium heat with a tad of salt, until they are well on their way to soft.  Turn the heat down now a bit.

Take one good sized russet baking type potato, scrub and wash it real good, then slice it into thin rounds. 

Place the potato rounds in a single layer all around the skillet, even up the sides, and on top of the cooking onions.  Place the lid on it, and turn the heat down to low.  You want to give the potatoes time to cook almost completely.  For my stove on low, I let them cook about 10 minutes.  Don’t stir, and let them cook in a layer like that.

While that is cooking, beat 4 eggs, and add some meat.  I take 3 slices of smoked sandwich ham Oscar Myer I think, and just chop it up into pieces.  Beat this into the eggs and set aside.

I keep a bag-o-frozen spinach in the freezer all the time, so I take out about a ½ cup and thaw it for about 45 seconds on the microwave, set it aside.

I always have shredded cheese on hand, and for this I happened to have a parmesan/reggiano mix and a cheddar mix.  I put ½ cup of each into a bowl.

Now, it should be about time that the potatoes are ready.  Remove the lid and pour in the egg/ham mix.  Don’t stir it, just let it fall as it may.  Crumble in the spinach, then add all the cheese, a little salt and pepper, and put the lid back on.  I have an electric stove, and I cook mine now on 2.  For gas, I would say this is a flame that is barely there.  You don’t want to scorch the potatoes, you just want the eggs to cook and the cheese to melt.  Keeping it lidded I have found really helps.

I cook mine on very low heat like this for about 8 minutes.  Then, I turn the heat off, keep the lid on, and let it “set” for another five minutes or so.

 

Then Enjoy!!!!  It is delicious.  And not nearly as much work as it sounds like.  Here’s a picture.  This is not mine, I totally swiped it from the net, but this is very close.  I think this one has broccoli as the veggie.  I’ve often thought that chopped asparagus would be good to.  But anyway:

 


 
So yeah, tummy issues again. 

Friday, June 16, 2017

Going To See The Ear Nose and Throat MD next week UPDATE - Got Lab Results Back

I finally did it.  Made an appointment to see the ENT next week.  I really thought he had retired and I was going to have to drive to the next town, but he's still here.  This guy treated my kids 25 years ago.  I'm getting everything else checked out, so might as well get the throat looked at.  My voice quality has changed dramatically, sometimes I just loose my voice, for a few seconds.  And the back of my throat always feels stiff and frozen (not cold frozen but just immobile).  The lungs and heart are involved, I already have a really bad tummy with acid issues, so you know......makes sense to get it checked.  Need to make an appointment with the pulmonologist too.  Its been since November since I saw him.  I know he's going to want a new lung-function test, and honestly, I really don't think I can.  Just the thought of it, makes my chest hurt.


I'm calling the clinic today to see if my labs came back from last week checking for an infection.  This thing has surprised me many times, so I could be wrong.  But If I had to bet, I'd bet on infection because I am really starting to not feel so well.  Its been days and days since I had a good day.  And the left lung in the back is still tender and hurty and has been for a while.


Its always something -  have a good weekend, just breath.


Update - Just got the call from Dr. G's office with lab results.  Kidney and liver function is normal, sugar is a teensy bit high, but not as high as I figured it would be.  There is no indication of any infection (Yay!!), but my sed rate is high.  Which means this mystery fever is inflammation.  RA inflammation.  Active disease.  So its good, but its not good.  An infection is something we can treat.  High disease activity, eh well, you know.  Prednisone, and pain killer.  Dr. G said if the fever continues over the next couple weeks, to make an appointment to come back for an ecco.  So, there we are.  Looks like fever is just going to be a part of my life now.
have a great weekend!

Monday, June 12, 2017

The Tummy Bug Clings For Dear Life - And Another product review.

That tummy bug is still with me.  I'm still having "episodes".  In between those said "episodes", I'm ok.  But just before an "episode" (hehe....I have a thing for quotation marks :), the tummy begins to rumble and get noisy.  Then the pain begins, then I feel the gears shift, and its a dash to the rest room.  Sorry if TMI, I have to get it all down for posterity.  I try to make it as generic as possible.


Last night in the middle of the night, I had a coughing spell that was so bad, I had to change clothes.  I will leave that one to your imagination.  Just woke up feeling like I was choking.  One of the side effects (one of oh so many) of the prednisone, is a very VERY dry mouth at night (for me anyway).  I can wake up and the sides of my throat are literally stuck together.  That's why I sleep with my Yeti filled with ice water every night.  I don't know what triggered the cough spell, but when I coughed, my throat was stuck together and my top lip, I kid you not, was stuck up above my teeth to the gums, like my lips had dried out and began to recede.  What a lovely picture, I know.  Anyway, I grabbed a drink and got it down before the next round of cough.  The tickle down in my throat started, and away we go!  10 minutes later, I've completely wet myself (sorry), and I'm in the floor trying to crawl to the bathroom.  I sleep on the other end of the house from the mister, so I'm kinda on my own down there, unless I yell for him.  but I don't like waking him up unless its absolutely necessary, you know?


Yeti!!  I **heart** my yeti!  My oldest brother gave it to me for Christmas, and had it monogramed with my initials in big letters, and my pet-name (the one my dad branded me with at birth is "Lucy" which has nothing to do with my actual name, everybody just got a pet name, its my dad's way) on the other side.  :)  I love it.  If you don't have a Yeti, get one!  Mine will keep ice water cold all night long, and its still has ice in it when I get up. 


http://yeti.com/rambler

Other than that, I'm fairly well.  Just waiting to get test results on lab work from last week.  I just did that Friday, so it will be a few days yet.  Oh, I also have pulled my right shoulder AGAIN (!!).  Not as bad as the last two times, I'm managing.  I think it may be from using my right arm to work the crank on my recliner/sleep chair.  Hurting down my neck (it always hurts but....) into my right should blade.  Same place as before, same injury as before, just not as bad.....yet.  As I recall, the last two times I injured this shoulder, it started out very suttle for the first two days or so, then WHAMMO!  Emergency Room at 3:00am.  Long story.


Anyhooo-  All systems are go (some systems are going too much...see above...but eh, it could be worse).  Ya'll have a great week!!


Tootles



Friday, June 9, 2017

A Doctor Visit - Samples on Demand Updated

I saw Dr. G yesterday about the fever, and how over the last few days I've had more painful bowel issues and the nausea.  Well, first off he told me there's a tummy bug going around (I KNEW it!!), so that is probably what is going on there, and its probably the doubling up on the DanActive that has kept it from being any worse.


As for the fever - he sent me home last night with a cup and wanted me to cough up some lung goo.  Not so easy.  My cough is generally very dry.  If I take a Mucinex I might can get something up.  So I tried and tried last night and the two times I did manage it, the gag-reflex kicked in and that's the end of it.  **sigh**  I also, when I pulled in the clinic lot this morning, realized I'd not had any water yet and had already went to the bathroom.  No way was I going to be able to pee on demand.  So I just left.  I'll sit here and drink water and hold it, then go back later around my lunch break time and give that and give some blood.  As for the sputtle, I don't know that I can give that.  I tried, and I'm sore for it.


Dr. G said it was probably time for a new CT and heart echo.  So I will probably be doing that in the near future.  It's been over 6 months since the hospital stay and the PE, so I'm sure we need to see if the clots are absorbing.  But as I said, big deal.  The damage is done.  But still.


So nothing new yet.  Going to wait to see what the blood draw and the liquid sample shows upon testing.  I'm sure it will be next week before I hear on that.  Until then you guys have a great weekend.  take it easy.  Chill and be still :)  I'm planning to work on some projects myself.  Hopefully I will have a new finished shawl to share.


Tootles.


Later that same day......
I went back to the clinic.  I saved up and didn't go to the bathroom all morning, I was hopping on one leg by the time I got there.  :)   So they took a whole bunch of blood and I left them some other liquid too.  Still no lung goo.  I tried.  I really did.  He'll just have to go with what I gave.  Maybe I can get it up this weekend.  But should it go in the fridge?  hmmmm....maybe I'll just nix that part and see what he says.  Now we wait for results.


I almost hope its an infection.  We can treat that.  If its not an infection......well, lets not borrow trouble.  Ya'll have a good weekend.

Wednesday, June 7, 2017

Not a Good Day

The left lung is hurting, down in the bottom in my back.  Hurts to breath, ohmygosh I sneezed, pain.  Extra prednisone will be on the schedule I'm sure.  I woke up at 3:00am and couldn't get back to sleep until after 5:00, so I feel like a zombie.  Ran fever yesterday evening of 100, it took 3 hours and 2 Tylenol Arthritis (that's over 1,300mg of acetametaphin) before it came down.  I'm calling Dr. G today to see if I can come bring some samples as I had planned to do a week ago and didn't do, just to see if there's a mystery infection going on somewhere.  I've started keeping a record of it again, so I can show him.  I feel like I ran a 10K yesterday, with sand bags attached to my body.  ***cry***


I'll be back another day.


Update - Got an appointment with Dr. G tomorrow at 3:45.  I made the mistake of eating some scrambled eggs to try and cushion my tummy from all the meds down in there, now it feels like I'm going to have an irritable bowel episode.  **pain**  **cry**.   Stupid RA.  I hate you.

Monday, June 5, 2017

Where Are We Now?

For the 3 or 6 people who stop by here now and then, you will know I follow Cassie on Youtube.  Cassie and I, and many others like us, are paddling the same type of boat.  Interstitial Lung Disease (Pulmonary Fibrosis) caused by Rheumatoid Disease, and all that comes with it.  Happy happy.  :/  Cassie gives us updates on how she's doing, I like that.  We (as in "we interstitials and RA'ers) have to watch out for each other.  We have to be our own advocates, our own t-shirt wearing cheer leaders, our own pep-squad.  I though I'd do the same.  As a matter of record for the doctors, you know.  *grin*


You know, just in the last week I've been told "you have such a good attitude" by no less than 3 people.  I always want to ask, "would you rather see me puddled on the floor in a sea of my own tears, tearing my hair out by the roots and screaming Why Why? with my fist in the air?"  That's just silly.  :)  I know I know.  Terminal disease, tragic car accidents, babies dying just hours after birth, people at the wrong place at the wrong time being caught up in some deadly incident having nothing to do with them, kidnapped children.  These things happen to some one else.  Until they happen to you.  I will be 50 in July.  I've lived a nice long life.  It hasn't always been easy.  There are many MANY things I'd do very differently, if given the chance, some things I wouldn't change a thing.  But bottom line is I've lived a long life.  Parts of it are tragic, especially the early parts.  Parts I'll take to my grave with me.  And parts that, to this day, make me smile when I think about them.


Where I am today healthwise -


Lately, again, or should I say, "continuing".  Anyway - I have been running fever again.  Its very sporadic, no rhyme or reason to it, it just happens.  That being said, if I am more than an hour late on my prednisone, I'll begin to run fever (low grade, 99.  Maybe 100, but usually around 99), and it can sometimes take hours to get on top of.  And I know that 99 degree fever doesn't seem like much, but my baseline temp is lower than the accepted normal of 98.6, which, lets remember is just an average, its not an absolute.  My normal baseline temp runs around 96 to 98.  So, 98.6 actually means I have a slight temp.  so 99 means I feel shitty.  I know I'm not alone in this, even though medical people will stare at you with that "bless her heart" look when you tell them this.  Fever.


So what does this mean?  I'm not sure except that it would probably be inflammation fever, which leads to the logical conclusion of greater disease activity. 


I'm having pain in the lower quadrants of both lungs when I cough very hard, or if I attempt to take a huge breath, filling both lungs.  Which actually I can't fill them, but as full as I can get them.  Dr. G says there are diminished lung function sounds from the bottom up, a few inches I guess.  Progress.  The round circle in the middle of my chest hurts a lot.  I can generally stay on top of it with the pain killer and prednisone.  But that one spot, right in the middle there, lets me know toot-sweet when its time/past time for prednisone.  Its been over a year since I had my heart checked, that needs to be done again.  Sometimes, actually it happens a lot, my heart will skip beats, and when that happens, for about a nano-second, I get a head rush.  The blood clots are probably well on their way to being absorbed.  But big deal, I have infarction (dead tissue) where the clots were, so even if the clots absorb, the permanent damage is done.  So I don't get to "feel better", at this point, all we can really do is attempt to prevent new clots.  What a sucky situation, eh?  I forgot to mention the whistling sound and the mewing cat sounds that come from my lungs sometimes.


The back of my neck is fat.  Fortunately, I don't have the large "buffalo hump" so many prednisonies have (Did I just coin a term?  Prednisonies - People who are permanently dependant on the drug prednisone. Adjective.  Love it.).  Now.  That's not to say I didn't get the prednisone fat-shift.  All the fat on my body, including the added-fat from the drug and the fluid, it all migrated from my arss, up to my middle, and I now have a belly that looks like I could give birth anyday now ( And I used to sport a 28 inch waist...bye bye!!).  I have these bird legs, and a prednisone body from the hips up.  I look like an apple, with two tooth picks stuck underneath.  Moon face.  Lets not forget the moon face, not to be confused with Moon Pie :)




Moon Pies are really just a round s'more.  Chunk one in the microwave for about 15 seconds.  Bam!  Giant S'more.














I think I need to see an Ear/Nose/Throat doctor.  Because sometimes its hard to swallow.  Like my throat is swollen.  Even liquids are hard to get down sometimes.  And my voice comes and goes sometimes.  Not so much lately, but it happens.  The nausea comes and goes.  it hasn't been too bad lately.  And thankfully, it doesn't last long.


I've already been to the eye doctor and got the RA in the eyes diagnosis, so I have that going for me.  I've accepted that blurred vision is just part of life now.  Even with the best glasses.  The lid on my right eye stays swollen all the time, so most days, its hanging down over my eye, like an eye stye and both eyes always look dark, like I either got punched in the face, or I haven't slept in days.  When I first wake up, I have vampire eyes.


Biggest complaint?  At the moment, how hard it is to breath when its humid outside.  When its really really warm, or hot and humid, I mostly have to stay in doors.  Which is fine, because I don't go outside much anyway.  The thought does cross my mind that after I get home for good on retirement, I'm going to have to make myself get out as much as I can.  If I can.


A Good Report?


Why yes!  Take a look at my shingles:


Two months out.  It looks really really good.  However, I'm still convinced its going to leave some scaring.  Again, that one in the middle is really deep, even though you can't really tell here.




























My weight.  *sigh* I really don't want to talk about my weight, but its part of the problem.  I've gained 60 pounds on the prednisone since November 2015.  I will say I seem to have hit a plateau.  I haven't gained anything in several months, since before the hospital stay in November.  That's good news!!   Every little bit helps.  I try not to worry too much about it anymore.  With the time I have left, I'm going to eat the food I love to eat, in moderation.  I'm always aiming to drink more water, and I do.  But at this stage of the game, damned if I will deny myself a piece of chocolate cake because I'm worried about....whatever (calories, carbs, gluetens, whatever!).  Those days are long gone.  I will never sport a 28 inch waist again.  I will never wear a size 10 again, I will never weigh 140 pounds again.  And I will never be 5ft 8" tall again.  Never.  So I let it go.  The bloom was lovely while it lasted.  Let it go.  I have bigger fish to fry, more important things to ponder, than the size of my back yard....however, I will not lie and say it never crosses my mind.  I just let it cross, then kick it out.  :)


Bottom line from my perspective - I'm progressing.  And not in a positive direction.  It is what it is.  I pray for courage, and strength, and the grace to face it with dignity.  And I always try to remember what Joey said "Its going to be ok.  Even if its not ok."


Till next time!  Tootles - Just breath.