Saturday, May 11, 2019

First Class Passage On The Crazy Train

So many things happening.  More changes, some I'll talk about, some I can't.  A new diagnosis, and some (finally) explanations for some other things.  New news on the disability, new news at home. Changes changes changes.  Nothing stays the same.  I'm done trying to figure out what the hell is going on.  What is God trying to show me.

Well, I am formulating a different post for all that, and its just taking time.  I'm still trying to process stuff. I just wanted to check in and say "hey" and exhibit my newest creation, fresh off the hook!



Can you see my dog photo-bombing me from the landing?



Isn't she lovely??



My phone takes sucky pictures, sorry.  The colors are so much more vibrant and bold than what you see here.  I love it, and gifted it to my DIL for mothers day.  This project has tried my patience several times.  I felt quite a sense of accomplishment when I cut that last end.  Oh the ends to weave!  Each flower has 6 ends to weave and so I weaved as I went.  Its the only sane way to do a join as you go.  Crochet and knit, once again, are keeping me sane.

And if anybody is wondering here are the stats:

Pattern:  Pick A  Primrose by Arne & Carlos

Get the youtube tutorial here:   Click Me

Yarn:  Tons of colors from my stash including HL's I Love This Yarn, Red Heart, Bernat, and some Vanna's Choice.  All the flower centers are Caron's Simply Soft in Taupe

Hook:  Lykke size J  My new favorite hook.  They are awsome driftwood hooks.  Click the link to check them out.


Ya'll be sweet, and here's a tune to listen to.  I'll be back in a couple of days and tell you everything.  Its a lot.  Sorry to leave you hanging.


Thursday, March 21, 2019

Time Marches On

"...and sooner or later you realize it's marching right across your face."  Truvy from Steel Magnolia's


Hello internets!  We'll skip the intro and dive right in, k?  :)

Disability

I got denied on January 29th.  And then I hired an attorney.  And they filed an appeal.  And nearly 8 months in now, I'm still waiting (yes I know I shouldn't start a sentence with "and", I'm doing it on purpose.  Sort of like a gramatical shaking my fist in the air.  Don't judge).  Its been so long, and I've been through so much.  I'm finally working past the gut-wrenching fear that has plagued me since the moment OPM told me on the phone that day, what my monthly pension would amount to.  The Mr. says when it happened, my face went snow white, then it turned red.  That's the color of "totally devastated".  I see my new rheumy for the first time tomorrow.  I still have RA, I still have RA Lung.  It may be quiet at the moment, but that can change.

How I Feel

Honestly, not too bad.  I actually never thought I'd feel like this again.  But, again, its the endurance and stamina.  If I even speak too fast, I get breathless.  I can get things done, it just takes me 4 times as long as normal.  As has been for 3 years, I can't clean a house, but I can do a chore.  I'm pretty firmly at 10mg of prednisone, and have been for a couple months now I think.  I haven't tried 5 yet, but plan to soon.  Every time I've tried 5mgs, the wheels start coming off.  I feel my best at 20mg's.  But that was part of my problem that's waaay too much prednisone.  The fact that I will live with pain, fatigue, infections etc I've accepted long ago, I've had RA since 2005.  Over all, I am millions better than I was, but so fundamentally changed.  On a good note, I'm now down 41 pounds of the 60 I gained when I got sick.  And I haven't even tried.

I STILL have a crud.  I've basically been sick since we got here.  The problem now though is the pollen.  The Mr. is so bad, had to take him to the doctor and he got an antibiotic.  I probably could use one too, maybe I'll ask about it tomorrow.

Mental

Still not real good, but I'm getting there.  I hope I "get there" before my family takes out a contract on me.  Some days, I'm not a pleasant person to be around.  The anxiety is incredible and I sometimes I consider asking for my anti-anxiety med back.  But I've come this far without any medicinal help and if I can continue without it, I want to keep trying.  Some days are really hard though.  Really hard.  This last year has been incredible and has scarred me, physically and mentally.

One of my problems is bad thoughts.  Most days I wake up with bad thoughts.  Obsessing over shit that happened 35 years ago, then it usually moves to how much medical debt I have, a lot of which I haven't even started making payments on, then its back to past "offenses" or stupid crap I did.  Just really stupid stuff.  And it sets the tone for the whole day.  Its like a recording in my head that goes round and round like a broken record (the old vinyl kind).  How can I ask or expect anybody to understand when I don't understand my self.

Well, I started making a concerted effort every morning to pray and purposefully think good things.  Think about my blessings, think about how I'm still here, and I shouldn't be.  But still being here is part of the problem too.   Its hard to explain.  I've spent the last 3 years preparing to die.  I wasn't supposed to make it.  I wasn't supposed to get better, but I have.  There was NO PLAN B.  There was no thought about giving up our home and 90% of everything we own.  I was going to pass away, and the Mr. was going to get the insurance and be better off, and I was going to be where I know I'm going, no more pain, no more sick, the ultimate healing. I was going to be with my Lord, and my mama and my grandma.  I was prepared to die. It was my way out of this.  I was not prepared to live with a life that resembles a war-torn 3rd world country, a life that if disability doesn't come though, will be virtually destitute and at the mercy of family.  I never prepared for that because I wasn't going to live.  I desperately want to grasp hold of this "second chance" and embrace life.  I want that badly.  I just don't know how to do that.  Yet.  But  I am learning.

I am anxiously awaiting summer.  Summer will come, and my grand-girlie will come here.  And it will be alright.  I don't know how, I just know it will.  Keep me in your prayers and send me good thoughts and vibes.

Ya'll be sweet.





Man I miss the 80's.

Saturday, January 19, 2019

Hello From South Texas!

Sorry its been so long.  We have been here now about 6 weeks.  We immediately both came down with a crud, and by Christmas, mine was a full blown sinus infection, and I was without a voice for the entire week of Christmas.  I am feeling much better, but still blowing from the nose and I have a cough.  Which I will talk about later.  So much to talk about....

The trip out was blessfully stress free and uneventful, and we quickly fell into a routine here.  The house is so beautiful!  And big.  My favorite place is out on the back porch.  As I knew it would be from the beginning.

My son left last week for technical school out in Arizona, and my pretty DIL went with him to help him get settled in his apartment.  She stayed a week with him there, and flew home on Wednesday.  The kids were left here with us, and my DIL's nephew, who lives here too.  We were all pretty happy to have her home again.  My son will be residing in Arizona for nearly 2 years attending this school, and won't be coming home much but the holidays and such.  We miss him already.  I'm hoping, well, We will talk more about that later.

Health

The Mr. and I met our new GP on Wednesday.  He's very young, or at least very well preserved.  I'd say early 40's.  To me, for a doctor that is young.  But anyway.  He's very nice, and seems knowledgeable.  What with my history and current issues, you can imagine my visit was quite interesting.  Since we were both still blowing stop-light colors out our noses, and the Mr's cough is epic, we were both put on antibiotics (needed that!) and the Mr. got some cough meds.  We go back in about 3 weeks for full labs (sugar, thyroid, blah blah blah).  This guy seems very thorough, we like him.  He is also setting me up with a pulmonologist and a rheumatologist.

How do I feel?  Physically, not bad.  Not bad at all.  My endurance does not improve at all, as expected, and for the last 3 weeks or so, I've been nursing a small right-lung flare.  Nothing major, thank God.  Just a little stiff and hurty, but well controlled with Tylenol and upping the roids a bit.  I think its on its way out now.  But you know....that's just a cold reminder to me that this is never going to go away.  How long this quiet will last, only God knows.  But I'm thankful its not worse.

The IBS has been flared up for a couple weeks now and I'm taking Pepto Bismal caplets twice a day.  Would you believe those little things work like a charm??  I'm stocking up.  They work better than anything else I've ever taken for it.  And its been at least since the spring since the last time this flared up.  When it started, about the same time as the lung swelled up, I was pretty sure I had fluid again.

I haven't lost any more weight, and I'm still down 35 pounds since the April hospital stay.  Yay.  I still need to lose minimum 30 more pounds, but I've got bigger fish to fry than stress over how fatty my ass looks.  You know, all it takes is some age and/or a big sick, and your weight worries fly out the window.  It used to be all about how cute I looked in that black mini skirt.  Now its about comfort.  I'm not young and cute anymore and I refuse to be like some women who snatch ahold of the youth with tenticles and hang on for dear life.  Even though they are dressed for somebody 30 years younger and don't realize/care how ridiculous they look.  Or worse, spend a life's savings on surgeries or having dangerous chemicals like botox shoved into our face and end up looking like Cher.  The current fad that just sends me around the corner is this dying hair freakishly unnatural colors, like blue, pink, or the worst one, Raggedy-Ann-Red.



But anyway, I'm blathering.

Other than just being so fundamentally changed in my body, I feel pretty good.  I'm not who or what I was, but I'm alive.

Disability

Well, where do we freakin start?  No, I still have no answer.  And it is mentally tearing me to pieces.  Its all I think about (read: worry over constantly).  On December 11, my case worker called me and said that she had been asking Dr. Williams' office to send her the results of my lung function test done in September.  They had sent her everything but that, and she'd requested several times.  She asked if I could call them and get a fire under them, that that was the only thing holding up my decision.  I freaked.  Of course.

So I called them and long story short, my case worker got the info, and according to her, 3 days later on the phone, it was all settled and my case was going back to their doctor for final review "within the hour"  and I quote.

Wednesday morning,  FULL MONTH later, I called her again.  What's the holdup?  Whats the status?  Get this...she said that on December 13, she mailed me another daily-function-questinaire, and they had not received that back yet.  OH...MY...God.  Yes, I said that to her.  And then I said, "are you serious???  Why?"  She did admit that their doctor is over-kill on that sometimes.  That my information from September had aged.  And I said, "when is this going to stop?  I have given you all the most recent updated information one could ask for, then it sits on the doctors desk for weeks and by the time he gets to it, the information is aged!  When does this stop??"  Not only that, but I'm in Texas.  

Bringing it down to the conclusion, we did the questionnaire over the phone, and I was told to call her on Tuesday to see if there's an answer.  People, I'm just shaking my head.  Meanwhile, most of the time we can't even afford a stick of gum.  And BTW, the questionnaire we did over the phone?  The exact SAME form I did back in September.  The doctor wanted an "updated" form.  See what I mean?  I give up.  I give up.  Monday morning, I'm going to see about taking this to the next level.  Dayum.  Even a negative decision is better than this.  I feel like I can't move forward.  I can't plan for the future.  All I can do is exist at this point.  As best as I can.  Absolute ridiculousness!  Meanwhile, I fall farther and farther down this financial hole of nothingness.

Most days I just piddle.  I'm helping my DIL take care of the kids because she's a night nurse and sleeps during the day.  So there's always laundry to do.  Keeping the kitchen clean.  Most every thing I do, winds me.  So most days I just hang around the house.  I'm learning how to get to everything around here.  Walmart is literally 10 minutes from my drive way.  And 5 of those minutes are used looking for a place to park.  I love that.  Hobby Lobby and Tuesday Morning are only about 5 miles up the road.  I have two Dollar Tree's near me, and more places to eat than you can shake a stick at.  The best part??

You can get everything (practically) delivered.  We don't even grocery shop.  We order them online, or on the phone, and they deliver.  Right to the front door!  Is this place awesome or what??  I also know where the closest public library is, although I haven't made it over there yet.

The Cough

While I was in the middle of the crud, the cough morphed into the stratosphere.  I was hitting my inhaler 3 times a day!  Eating Lifesavers like candy (pun intended! :)).  It has settled back down now that I seem to be on the backend of this cold, thank God.  At the moment its calm.  It comes and goes.  Good days and bad days.  
Honestly, if it were not for the breathlessness and total lack of endurance, I'd be in good shape.  But those are two things that are never going to change.  I'm just not what I was.

Well folks, there are still many things to talk about, but I really want to get this out to the press, its been so long.

So I'm going to wave goodbye, and say I'll be back.  'cause you know I will.  You know the drill....

Ya'll be sweet, and love on your people!


Sunday, November 25, 2018

Four Days And Counting

Well guys, its been a rough month.  The Mr. and I celebrated our 31st anniversary on Friday.  Which means a LOT of the last month of preparing for this huge (life changing) move to another state, has been fraught with going through and throwing out 30 something years of: old bills, a decade of tax papers that could have been destroyed a years ago, mounds and mounds of paperwork and receipts, pamphlets for the microwave, the fridge, the toaster, the washer and dryer.  Stuff that was important to keep at the time, but are now useless.  I sent to the rescue mission 7 lawn-n-leaf out door trash bags full of clothes.  An entire wardrobe for at least 3 women.  Clothes I wore to work, and some of them had never been worn.  And dirt.  omg.  Since I got sick 3 years ago, deep-cleaning my house (that I used to do at least once a month) stopped.  Especially this year, which has been my worst health wise.  I just didn't have the stamina.  Last time I mopped my kitchen floor, I had to rest twice.  Its a tiny kitchen.  So as you can imagine, this place was a pig stye.  I could only do bare minimum.  I always kept my kitchen clean (dishes and such), I hate a dirty bathroom so I always kept those clean, and I like clean sheets.  The rest got shoved to the side.  Things like dusting knick-knacks and pictures on the walls, washing curtains, wiping down the walls and baseboards.  The nit-picky stuff.  Well, I'm leaving it.

The place needs some love.  The walls need fresh paint, the carpets need to be shampooed, the windows are filthy you can barely see out of them.  I'm leaving it all.  The Mr. and I are doing what we wanted to do all along.  Get rid of our garbage (see above), take what we want, and walk away.

We are leaving about 90% of what we own.  We are taking our clothes, all the pictures and items we can't part with, my yarn hoard (which, btw, I scaled down by half and got rid of the rest), my mama's chest (God rest her) and that's about it.  I'm leaving all the dishes, cookware, 99% of the furniture, we're even leaving what ever food is left in the pantry.   We have spent most of our time making piles of keep/throw/give items.  And since we are leaving so much, it doesn't really even look like we're moving.  It just looks extreamly cluttered.  The Mr. even has a 12 x 12 shop out back that is full to the brim with tools, and all the other bits and bobs that are important to a man (because you just never know when you'll need it.  *eye roll*).  He also painted the master bath room.  It just needed it bad.

This is a complete life-changing move.  Seriously.  We'll be living with our kids.  It just makes sense, its the right thing to do.  We lost 75% of our income when I retired, and we are just barely getting by here.  Just barely.  If not for family the last few months, stepping in and helping, I don't know what we'd have done.  Its hard too when you're used to making good money, and having enough and plenty left over, and going to barely enough to make ends meet.  But we're adjusting.  We barely got by when the kids were little, before we made good money.  My mom and I were pretty poor at times.  We're no strangers to hard times.  It is still quite an adjustment no less.  Especially when our hardship is caused by my health issues.  I live with that.  I know, that's what everybody tells me.  I'm getting there.  Its a slow process.

We're almost there.  Almost done.  I'm leaving the town I've lived 40 out of the last 50 years.  Both of us have lived in this house, longer than we lived in any other place in our lives.  Its still not going to be easy.

Tomorrow I have to put in a change-of-address at the post office, having lunch with Leslie too.  That will be hard.  Leaving behind a best friend once again.  And again, not new ground for me.  Tuesday I'm having lunch with my dad.  Its going to be heart breaking because he and I both know this will probably be the last time I ever see him this side of glory.  That's all I can say about that.

As I said in my last post, I reached as-good-as-it-gets weeks ago.  But its something I can live with.  When we get settled in the new place, the Mr. and I are going to start a walk program, now that we will be in place conducive to that.  I'm going to really get back on program with my sugar too.  I've back-slid on the soda's and potatoes.  And I'm still eating Slim Jim's like there's no tomorrow.  They've become a comfort food.  There's a story about me and Slim Jim's from my child hood.  A sweet story.  But it involves my dad, and well, maybe another day.  Its just a precious memory to me.

The cough is no worse.  About the same.  I'm still doing the albuterol and the Respimat.  I've increased the prednisone several time over the last few weeks just to get through the packing and moving things around and lifting boxes.  I'm still running low grade fever a lot, and only one time it went all the way to 100.  But only once now.  Over-all, considering what I've come through, I feel pretty good.  Nothing like I used to be, but that's ok.  I have limitations.  I'm hoping once we get settled and start walking again, that my stamina will improve too.  We'll see.

Well ya'll, you won't hear from me again until we get there and get settled, and I'll come back with lots of things to talk about.  We're all looking forward to Christmas this year.  Our grand-girlie is coming out to visit.  Remember I said its she and her family that are taking over our house.  Our two step grandson's will be there.  We're going to have baked ham, and cornbread dressing, and potatoes and greenbean casserole, and cheesecake and chocolate cake, and oh I don't know what else.  Its going to be good.  I just know it.  We're ready the Mr. and I.

So you guys know the drill, right?

Be sweet, and be kind.  And love your people real good.  I'll be back soon.

One from the 80's



Tuesday, November 6, 2018

Changing Times Changing Me

Doctor and Medical Stuff

I saw Dr. Eye (aka the rheumy) on October 30th.  It was ok.  Just the usual pleasantries.  She was happy about the prednisone taper (stable at 10mg.).  So am I.  I tried 5mgs for several days, and the wheels started to come off.  Morning stiffness returned, neck pain returned, ankles swelled and hurt.  She actually agreed that staying where I am for a little while is ok.  It is still better than 20mg's a day, which was, I believe, contributing to my demise.  The big thing that came from this visit for me was getting on the scale.  I know.  I'm still letting that sink in.  I've lost another 4 pounds.  That's firmly a 35 pounds weight loss since I was in the hospital in April.  You may recall, I was 18 pounds heavier the day I checked in, than when I left 12 days later.  I never gained it back.  Yeah, again.  Imagine that.  I'm losing weight and not trying, yet my activity level went from a 6 (already at a snails pace) to a 1 (sloth-on-ambien pace).  The only real change is I don't sit around and drink Dr. Pepper all day, hence I'm drinking mostly water, or unsweet tea.  I don't eat potatoes or rice as much because of the diabetes.  I also don't eat nearly as many sweets, for the same reason.  But I eat bread like fiend.  I have always been a bread lover.

I am feeling so much better.  Really really much better.  I am now having full-days of feeling good from getting up to going to bed.  The restless legs are still driving me insane.  Breathing reached a plateau about a week ago.  I think I am at "as good as it gets".  I'll take it because its a hell of a lot better than what I had before.  Honestly, I no longer *feel* like I'm dying.  I feel changed, different, still limited but the endurance level is triple what it was before the big surgery last month.  I can live with this.  If I can continue to lose weight, and drop the last 25 or so pounds more I really need to lose to be at optimum health and feel good, dang, I might actually be able to have a life.  It was about a week ago that I actually allowed myself to even think it.

The Cough

It gets its own sub-title because it continues to be a major player in my life now.  It is a monster, but is some what controlled with an aderall nebulizer and a Respimat in haler, lots of sugar-free Lifesavers and Jolly ranchers.  I have good days, and I have days where I cough all day long.  The serious coughing fits come and go.  Some days I may not even need candy.  Somedays I can hardly talk all day for fear of setting off a fit.  It can get bad.  Is it the COPD or RA Lung?  Soon as we get settled, I intend to ask my new GP.  Who ever that is.

More Changes

Its pretty much settled, and we will be moving on 29 November to a big city in another state.  I'm scared, worried, nervous, excited, hopeful, ready, anxious, and sometimes catatonic.  There's just so much.  30 years worth of pictures, furniture, heirlooms (just family, not like expensive antiques or anything, haha), keepsakes, old insurance policies, old bills, 15 years worth of tax documents (which some of those get shredded).  Just so much to go through.  We're downsizing probably about 75%.  My house, at this point, is a maze of walk paths around random trash bags filled with garbage at various locations, to be ready when one of us makes our way back over there to start sorting again.  Nothing that is TV reality-show worthiness, but still.  And dust.  omg the dust.  Sometimes it activates the cough, and I have to leave it.  The Mr. and I have several things in common.  One of them is that we're a little scatter-brained when it comes to this stuff.  We also like to move at our own pace.  Since we have 3 weeks (and we've already been at this for several days already, and have filled up the neighborhood trash bin, once already), we're taking it slow, taking our time.  No rush.  I tire easily still, and his back is trash.  For instance, I started the china cabinet yesterday.  Its about 80% done.  I have a lunch with Leslie tomorrow, then running an errand pertaining to our move.  I should be home by 3:00.  I'll finish it then.  There are piles every where.  Piles to keep, piles to throw out, and piles to send to the rescue mission.  And I haven't even started on my yarn hoard.  Oy vey.  I'm pretty glad now I had that surgery.  I'd never be able to do this, as I was before.  No way.  

So yeah, moving to a big city.  My handsome son and his smart, pretty wife have offered to share their home.  Its big enough to support all of us with some private space.  It took me a while, but after all that has happened, financially and with my health, I was finally inclined to believe it was a smart move.  Just ready to get there and get on the other side of all this.  So is the Mr.  We bicker and argue constantly, about anything.  Probably both just ready to see some new faces again on a daily basis.  Its going to be ok.

Mentally Speaking

I'm still depressed.  Worried this won't work, and we're giving up our home (that's paid for).  What if we get on their nerves?  More than anything, I don't want to be a burden.  I just want to live.  To be happy and safe.  Content.  If it be that I don't work anymore, I want to fill my days with knit or crochet.  Trying new and exotic recipes.  I've been watching video's about curry.  I want to try a curry.  Looks a lot like gravy to me.  I want to make cookies and maybe volunteer at the public library.   To get a small aquarium and fill it with lots of pretty fish.  To draw, and make journals (to possibly sell) and make books (maybe).  I want to see historic places, and visit museums.  I want to go to out door concerts, or to listen to a symphony orchestra.  To listen to Bach and Chopin while reading War and Peace or A Tale of Two Cities.  Or re-read all six Jane Austen novels.  Again.  For the umpteenth time (sorry, they never get old).  The real deal, not on Kindle.  I love the smell of an old book.  I just want to be healthy and happy.

Random

We were watching Pluto TV earlier and the Mr. found some documentary about Scotland, the castles and its coasts.  It was so beautiful I couldn't speak for fear of crying.  How blessed we are to have the pleasure of looking upon something so beautiful, when there's so much ugly all around us.  It soothes the soul.  And I am convinced...God likes color.  And pictures of places like the castles and cliffs of Scotland, Dover, or Ireland.  So much beauty to behold.   These I mention don't even scratch the surface.  Places I'll never see in this life, but maybe in the next one.

Be well everybody.  Our launch date to the new location is the 29th of November.  Still much to do, so much to do.  Don't be alarmed if you don't hear from me for a while.  It may be that I'm tired from packing and such.  If that is the case, I'll be back when we are firmly settled.  Otherwise, you may see me sooner.  Till then

Ta Ta and tell your people you love 'em.  Don't assume they know.  :)
And above all, be sweet and be kind.  Even when you don't agree.

Sunday, October 28, 2018

Sadness and Tragedy

What a horrible horrible world we live in.  America is quickly turning into Europe of the 1930's.  There are evil Godless people in this world.  Evil evil people.

God bless Israel.  God bless the Jews.  You are not friendless.

Friday, October 26, 2018

Getting There

Note:  Sorry about the wonky fonts.  I've tried numerous times to change it and Blogger keeps changing it back.

Just so I don't repeat myself, I'm posting what I wrote on FB Tuesday, then follow up with more thoughts and other stuff.


Yesterday was three-weeks since the big surgery. I had decided not to make any comments and reserve my opinion, for at least this long because I knew it was just going to take some time before I could gauge where I am. The past 3 weeks have been hellish, and that's putting it mildly. There were times I even thought the surgery was for nothing and didn't work, such as when I had coughing fits with ribs that feel broken, and wounds that hurt. Coughing fits made me cry. The pain in my left lung has returned and is still there. A testament to the fact that RA-lung will get them both, it is after all A-symmetrical. All that being said, compared to how I felt pre-surgery, I am one-million times better!! Saw Dr. G yesterday, and he was very pleased. I out-right asked if I was going to get better, and would I ever be where I was 3 years ago. He said I should indeed get better now, but I will never be "normal". The lungs don't "regenerate", not sure how to say that correctly. Once they are damaged, it is permanent, no going back. He said I would never breathe like a normal person again. But! I can get better which is something I'd given up on. That is, of course, as long as the RA leaves my lungs alone for a while, fingers crossed. I have tapered the prednisone again and I'm down to 10mg a day. Because of this, the RA has woken up in the other parts of my body. But that's ok. I can deal with it. I saw the surgeon for a post-op check in last week, and I nearly passed out when he said "no fluid". What?? This lung hasn't been without fluid on it in 3 years. He just grinned at me and repeated "no fluid". Miracle! Also, the drain tube was removed during surgery, and not replaced. Lets pray I don't need it anymore. I figured that was something I would have to live with for ever. God is good ya'll! So. To sum it up, I am so very much better! Breathing, while not "normal", is a million times better. The over-all body sick is finally gone. Is this the end of the story? No. RA has no cure and I stopped trying to predict and second guess it. I don't know what its next trick will be. All I know is right now, at this moment, I'm so much better! For that I am grateful! Thank you for the prayers, good vibes, and positive thoughts.


And that's pretty much where I am.  Monday was a very good day.  I felt good all day.  All. Day.  That hasn't happened since January after I got the first drain tube installed.  Tuesday was pretty good too.  But I think I over did it because since then, it hasn't lasted all day.  The RA is fully awake now in my joints.  I always said I was in remission in my joints since the lung issues started.  I don't think so now.  Now I think it was the 20mg of prednisone a day that kept it silenced.  Which also only exacerbated my immune system issues.

Sunday, Monday, and Tuesday I tapered down to 5mg a day.  And it got bad enough that I went back up to 10mg.  I'm stopping there for a while.  It comes down to 2 options.  Tapper off completely and feel like shit all the time (now that I no longer have MTX to help) and have a longer life with little quality of life, or 2) take the 10mgs a day and deal with what's left with Tylenol and have better quality of life, for possibly a shorter amount of time.  I'm choosing option 2.  Even Dr. G has said he didn't think I'd ever be able to get off it completely

There's a very good possibility the Mr. and I may be moving to another town, in another state soon.  There are lots of reasons why, not to mention it would solve a lot of our issues here with the house falling down, and the crappy neighborhood that is going to the shitter pretty quick now.  My health, the Mr.'s health.  It would just help us out, and help my kids out too.  Lots more to talk about that at another time.   We will be living in a big city again.  It's been a long time since we lived in a major city, like in the top 10 biggest in the country.  There will be so much to do and see.  Here, we're just two rotting potatoes.  No life.  At all.  And we bicker constantly.  A new place to live, in a new town, in a different state.  One door closes, another one opens.

Don't feel like going into all of it today.  I've taken some Tylenol PM and a benedryl to try and sleep because I didn't sleep last night.  It was after 5:00am the last time I looked at the clock.  It happens.  Actually, if I don't take T.PM. and a benedryl about an hour or so before bed, I won't sleep.  Not happening.  I never had this problem until after menopause and prednisone.  So Much Happened to me after menopause.  That too is a long discussion for another day.

I'm never going to be who I was 3 years ago when this all started.  But I can get better??  Is that even possible?  I had lost hope that it was even possible.  I've been planning to die for 3 years.  Dr. G and I talked about that.  As you read above, he thinks I *Can* get better.  Or at least a new normal.  He also said that had I not had this surgery, I was going to die.  It was just a matter of time before I got another bad ass infection I couldn't fight.  I've had 3 infections this year alone.  Either way, my future was very bleak.  He said that now though, he thinks I can get better.  My function will always be limited.  But I'm no longer actively on my way out.  Incredible indeed.

I've been to hell this past year, and I have the scars to prove it.  Literally.  The Mr. said my right side looks like I got shot.  Three times.  But I can get better?  I just shake my head at that.  See, I don't want to hope to high, or expect too much.  Because every time I have, I got the carpet yanked out from under me.  How many times have I said "...once I get over this and get to the other side, I'm going to..."  And it just never happened.  So I am approaching this whole idea of "getting better" with trepidation.   Hopeful, but realistic.  Hoping for the best, preparing for the worst.


Also, the cough is still with me.  And seems to be worse since the surgery.

So that's where I am.  So much better.  So much.  But still unsure of how *good* its going to get.  What does the RA have up its sleeve next?  I dunno.  I don't have an answer for that.  Some things we just have to give to God, and live well as we can.

Ya'll be sweet, tell your people you love 'em.

Amy Winehouse?