Wednesday, March 29, 2017

Everything Changes But Things Stay The Same - Who Are We Now

I'm with you Cass.....Sometimes I miss who I used to be.  I have the large framed version of this one hanging in my living room.  Every time I pass it, I just shake my head and smile.....those were good times :)  I enjoyed the ride.

High School Graduation May 1985
Just before my 18th birthday

But I think the nugget in all this is not who we were, but who we became, not letting this disease redefine us.  I dunno.... But I was cute!  LOLOL  :) 

Tuesday, March 28, 2017

Its Not Another Form of Arthritis

I think a global petition for the pharmaceutical companies and the medical communities to encourage them and school them and convince them to start calling it what it really is, Rheumatoid DISEASE because as we know, the "arthritis" is just a symptom.  Its a misnomer.  Its like having a bad head cold and calling it "constant sneezing syndrome". 

Thanks Cass for sharing on Pinterest!!

Monday, March 27, 2017

Forrest Gump Disease - And A Yarn Haul

Rheumatoid Disease is like a box of just never know what you're going to get.

My friend Sam had been helping me last week get some stuff packed up.  She txt me Saturday afternoon and said "beware, i just left the walk-in clinic, I have the flu".  So I was pretty sure that's what was going on yesterday when I woke up feeling like the worst flare ever was coming on.  But no, I got it figured out.  I was supposed to get up and take my prednisone at 4am, when you take it every 10 hours, its a different time every time, and usually I'm pretty good about it, but I slept through till 8:30.  When I woke up, every thing hurt, and I was running a temp, so I took my meds and thought ok, by the time I have to go get B-Girl, it will be ok.  Well it wasn't.  That's when I started thinking uh oh I have the flu.  But it wasn't.  My left lung felt like it was being st@bbed, and my temp still had not come down by the time.  By 12:00 it was clear this was going to take awhile.  It was 2:30 before my fever finally started to come down and it was bed time before my lung finally calmed down, and it took an extra prednisone to do it.  Being 4 hours late threw me into a mini flare that I thought was flu.   My lung is better, but tender today.  I just can't believe how long it took to get on top of it, just being 4 hours late on my med.  And of course solidifies what I already know, there's no getting off prednisone.  Ever.

Friday after work, I *finally* got to go to the new LYS with two of my crafting buddies.!!  You want to see what I got??  And since this is not a craft blog, I'll keep it short.

Berroco Comfort Cotton in a lovely teal

One I've never heard of, by Plymouth Yarns 
Its a delicious shade of blue gradients

And delicious cotton From Universal Yarn called
DK Seaspray


I only spent $68!  Not bad for high-end yarn.

Friday, March 24, 2017

All Things Considered....

Considering the pollen is thick on EVERYthing, and my lungs are not swelling, that my friends is a miracle.  Just a plain out miracle.  They are tender.  No doubt about it.  But by now, I should be at home in my chair unable to move.  I've had to come in a little late a couple days, and yes there have been some yukky days, see post below, but for the most part, all things considered, I'm ok.  That could change on a dime, but we don't think about that.  Nope.  We think on the good things.

Got a call from the home office yesterday, my paper work has made it there finally.  The lady who is my assigned "counselor" for this retirement called, I had forgotten to include one document, and on one that I did include, I had signed in the wrong place.  Why that didn't get caught by our local HR, I dunno.  But anyway, I faxed, she was happy, and we ended off by her saying "hopefully the next call you get will be to do your exit interview and final signatures"  yep.  We hope.

I'm still concerned about what I'll be bringing home as apposed to what I'm making now.  I'm going to loose more than a quarter of my monthly take home.  I'd have more, but I had to take out that huge withdrawal several years ago to pay my son out of a lease I co-signed to the tune of $10,000, plus penalties and interests and taxes.  I lost a lot.  He's our oldest that doesn't talk to us.  But any way, I still have some left in my 401k that will supplement us.  It will still be tight, but I think it will be ok.  Maybe I can get a part time job at the new LYS.  Dream Job!!

Once again, a tune just popped into my head this week, then I couldn't get it out.  So now I'm sharing.  You kids of the 70's will remember this one.  Ya'll have a good weekend.

Thursday, March 16, 2017

And Then There Are Those Days......

When everything hurts.  Even my eyelids are sore to the touch.  'Course I have the RD in my eyes so.....
My legs (clots?) are throbbing, my hips are hurting, my chest is hurting.  I just want to bust out crying.  Woot Woot for the good days, today is not one.

So just to keep from whining, I'll keep it short.  This is a journal of my RD/RD Lung journey, so even the whining gets included so the doctors can see it when I'm gone.  I want them to know everything I go through, mostly so maybe they can better help someone else.

I want to take more pain meds but I'm at work.  I can't do that here.  It will have to wait.  I'll suck it up until I can get to a good time to check out for the day.  Trying not to use all my sick time so I can sell it back, so some days I work sick.  It just is what it is.  When it hurts like this, I get frustrated, discouraged, sick and tired of being sick and tired.  I'm going to the ladies room so I can cry and nobody will see.  Its ok.  Its going to be ok.  Its just a pain day.  I have these all the time, suck it up, slap that fake smile on, and keep on trucking.

Wednesday, March 8, 2017

So Far So Good

But I'm not counting my chicks yet.  The pollen has been blowing now for about a week.  I'm feeling the normal-people affects like sneezing, tickle in the throat.  I also have itchy watery eyes...but I also have RA in my eyes so....who's to say.  The good news is that even though they are a teensy bit tender, there is no swelling in my lungs.  There's a lot of rattling.  But no swelling.  Yet.  Pray.  Could I actually get through this pollen season without a lung flare??  Could it happen??  The last one, you remember, cracked two ribs.  Oh this RA!!!  One of the most frustrating things about it, is its unpredictability.   Its the "Forest Gump" of a box of chocolates, you just never know what you're going to get.  You just know whatever it is, its going to hurt.  Probably a lot.  And it may or may not include a trip to the ER.

Something funny, well it is to me, kind of.  I have a chronic plural effusion on my right lung.  The bad one.  The one that collapsed on me a year ago from infection and I ended up having two thoracentesis to have it drained.  After the second drain, and we got things under control, a small amount of fluid came back.  Not enough to warrant the expense of another drain, so says the doctor.  But when I cough, my right lung "twitters".  I understand no one may "get it" when I say that.  I told dr. g about it, and he said probably what is happening is when I cough, the bit of fluid gets pushed up my lung, then after the cough, it trickles back down, and the trickle is what I'm feeling as a "twitter".  It kinda tickles...what can I say?  So the rattle and the twitter is just part of who I am now.  It just is what it is.

I'm going to be honest.  I feel like I got run over yesterday, I feel like crap.  But I'm ok.  I got stopped in the hall at work today by my personnel rep, and he informed me that my early retirement/disability package was at the next stop from them.  Its being reviewed by the first office!! Yipeeeeee!!!  I'm ready ya'll.  Every morning now when I get up, I'm thinking "oh man...I can't do this much longer!"  It really didn't start to bother me, until I could no longer sleep in a bed.  The Mr. still sleeps in our king size bed, just he and the dog.  When I pass by the bedroom, I longingly look at that bed, my side, so empty.  But!  I have a brand new recliner that I bought just for me, and I fixed up my craft/yarn room and now sleep right next to my yarn stash.  What more could a crafter want??  I'm so lucky and blessed!  I'm so blessed that I'm one of the few that the RA has never bothered my hands.  Ever.  I can still knit, I can still crochet, I can still pet the yarn.  For that, I am grateful because without my hooks and needles, I honestly don't know what I'd do.  Taking a hook, and a long piece of string, and turning it into a warm blanket, or a lovely sweater, or some socks.....heaven on earth.  It keeps me sane.

Just breath.

Tuesday, March 7, 2017

Gentle Music

Just because it popped into my head a few days ago, reminds me of mom, and now I can't get it out of my head.  Still feeling the spring flare coming on.  Lungs are tame at the moment, praise God, but I've got the other allergy season symptoms like everybody else around here.  So anyway -

The Theme Song from Valley of The Dolls - Dionne Warwick

Wednesday, March 1, 2017

An old symptom getting worse

Ever since the lung issues started, a year and some months ago now, and I went on prednisone permanently, I started having a mild tenderness under my right arm pit.  I read that RA and even Prednisone can cause lymph nodes to be tender and painful.  And remember there was that whole issue in my medical records that I found concerning a node that was 12mm.  Well, I've noticed now since I had to increase my prednisone a bit, the pain is radiating now down my arm, and even into my bQQb area. Is it the prednisone?  Is it an infection?  And when I reach out, I can feel it "pulling".  I'm trying not to be scared.  Again.   So I made an appointment for next week to see Dr. G.  I haven't made up my mind yet if I'm going to call him on the carpet about this, since he's known about it for a while and never bothered to tell me. 

No where that I've read, or in any forum have I come across, any person who got lymphoma due to RA.  However, the DMARDS have.  There are cases where Humira users got lymphoma.  I've only said something about it to one person.  I haven't even told the Mr.  There's so much drama going on with our place to live at the moment, I don't even want to bring it up.  One more thing to worry about.  I don't feel really good today, and I'm just sitting here crying as I type.  The lungs, the eyes, and this.  On top of every thing else.  I'm so ready to give up.  I don't know how much longer I can fight this monster.  I'm so tired of the fight.  Maybe tomorrow will be better.  But not today.