Wednesday, May 31, 2017

Thankful for the Good Days and a Product Review

I woke up this morning with the now usual nausea, but it doesn't last long, thank goodness.  Its almost like morning sickness.  Who knows....well I know for sure its isn't morning sickness...other than that...who knows?


I laid very still in my chair till it passed, then took my meds, and prayed they would stay down, and they did.  within about 45 minutes, and time to get up, I was ok.  By the time I got to work, I was feeling pretty good.


So strange this disease.  I'm ready to take a bullet one day, and feeling fine the next.  Well, my "fine".  And my fine is not really "fine" as one would know it, one being a "normal" healthy person.  But anyway, so yeah.  Feeling much better today.  My belly, welllll.....its ok.  I think its probably still just the prednisone.  I've been having tummy issues ever since I got the crude back the first week in December, the week I was home from the hospital with PE.  It got better, as in not going 7 times a day with horrendous pain, but better as in I'm now just down to occasional bouts of nausea, and a painful bowel episode maybe once a week.  Sorry if that's TMI, but this is how we learn, by other people's experience with this disease.  I try to keep it as "clean" as possible, believe me, there is so much I don't even talk about.  But this is also a record for my doctors after I'm gone.  For them to learn, and maybe help someone else down the road.  I think that is so important because this disease is so individual, and so different for every one who has it.  No two cases are exactly alike.  We may share a lot of symptoms and complaints, but we all progress differently.  And it can change in the individual, on a dime.  As I already found out.  Also, I drink a Danactive every day!!  Even if you don't have tummy and immune issues, people this is good stuff!  Good as in "Good For You"!!  Probiotics are wonderful little things.  I swear by it.  And I know that I know that I know, its the Danactive that keeps my tummy from being worse than it is.  Get you some!  I also credit it with keeping the pain-killer-induced-constipation far far away from me.  This stuff keeps the skids greased and moving with ease.  And each little bottle is about the same as 2-shots.  I get it down in three little gulps.  My favorite is the strawberry.  I can't recommend this stuff enough folks.  Seriously, if you have any tummy issues at all, try it for a couple of weeks and see if it helps.  Its not an over-night fix.  It will take at least a week, but after that, you are in smooth waters.  Sometimes I run out, but I never let myself go more than two days without one, then I get myself to the wallyworld and get some more.  Dannon is not paying me any money to say these things.  I say them because I use it, have used it for over a year, and it works for me.


https://www.amazon.com/DanActive-Vanilla-Probiotic-Dairy-Drink/dp/B00RASFQYU


Well I guess that's enough for today.  Ya'll be sweet, and take care of your constitution!


Tootles!


The Chronic Stitcher

Tuesday, May 30, 2017

Sick and Tired of Being Sick and Tired

This is, after all, a "sick" blog, so don't complain if all I talk about is my "sick".   My 3-day weekend was spent in my chair, with Netflix and Youtube, for the most part.  There's a bug going around the building.  And you know, bugs of any sort *always* make a pit stop by my office.  I sit in this chair all day long, trying to stay away from the sick people, and they always seem to come find me.  but anyway, here I sit.  Not for much longer, I tell you, not for much longer.  I'm considering getting some out-side forces to help me speed this early retirement/disability package moving along.  I refuse to sit here at this desk until I croak.  It is becoming clear that the ones who SHOULD be caring, are not.  So I'm taking the bull by the horns, and I'll force some changes and make things better for me while I wait this out.  I can barely breath this morning.  Honestly people.....how in the hell I'm still here, amazes even me.  But anyway....


There's this guy here in the building, I think I *may* have mentioned him before.  But, ohmygosh and shakemyhead.  Friends...I'm going to have to avoid him at.  all. cost.  Because he has no idea how close he came Friday to one of my now-infamous prednisone-moments.  This dude has RA!!  His sister died from complications of the biologic she was on, SHE had RA.  You would think, ahemm...cough cough....you would think he, more than anyone else here, would have a clue, and be more, what's the word I'm looking for......understanding?  No, that's not it.   Anyway, I saw him in the hall way on Friday, and he's done this to me before but I promise its the last time he'll get the chance to do it, anyway he asked how I was doing, and I was attempting to talk about my paperwork going through the motions, trying to get out of here, lungs getting worse blah blah blah.....he PISHAWED me!!  "oh please!  you're going to get better!"  "Really Mike?  wow, that was the same thing you told me this time last year and guess what?  I'm not better, I'm worse actually.  Actually, never mind I'm fine, thanks for asking"  and I grinned real big and stepped on the elevator.  Insensitive moron.  Just because his RA is very well managed and controlled (he doesn't even take MTX anymore, and has never been on a biologic), I guess he thinks like most people do.  You know, like with the tv adverts.  "well geez, that lady on the tv doesn't look so bad".   He, of all people, should be more sensitive.  That's the word....sensitive.  dumb ass.  Some people have no home-training, no people-skills.  I guess because he can move around like a boss, then all RA people should.  Ok, enough.....


*sigh* anyway.  Enough of the bitch-fest, and I don't feel good enough to continue writing, so maybe tomorrow.


TTFN

Friday, May 26, 2017

Having Eye Trouble.....

I just can't SEE myself staying here all day!  HA!!  Get it?  ok  anyway.....


Its Friday before a 3-day weekend, the parking lot is almost empty because most people take today also and make it a 4-day weekend.  But since I'm "sickly" and take off a lot already, I try to save my vacation hours.  I got that lump sum payout coming :)  And with the hours I have saved at the moment, before taxes, is almost $7,000.  So I work sick sometimes too.  But anyway, I think I may take a couple hours and skate out of here early.  Start the weekend off right.  yeah?


No fever!!  Feel pretty good, hoping it last all day.  Or at least until I get home.  Been thinking and reminiscing a lot about high school lately.  So, we'll do video Friday today with one of my favorites from the 80's.  I knew every word to every song on her first four albums.  And her best stuff was never played on the radio, you had to have the album or cassette to hear those.  But this one got air time.  I always thought it was quite amazing that such a huge voice could come from such a tiny person.  Ms. Pat Benatar......Rock and Roll!   high school in America in the early 80's.....good times.  Ya'll have a nice long weekend!!  Class of 1985...in case you were wondering :)





Thursday, May 25, 2017

Yesterday Was Not A Good Day

And I think I know why.  I'm beginning to think I'll never learn.  How many times do I have to screw up before it finally sinks in.  See, my brain still thinks like my body hasn't changed.


Tuesday when I got off work, I went to Walmart and did some grocery shopping (and a new sun clip for my glasses because I ALREADY lost the one I got a month ago).  I paid for it, dearly.  When will I ever learn that I can NOT work all day, and then go do something else?  When the fever woke me yesterday morning at 4am, I knew it.  But I got up and went to work anyway.  I lasted till 10:30, and left crying.


You've heard me say, the RA doesn't really mess with specific joints anymore (the neck doesn't count, remember).  but I still get the all-over-body-pain-getting-the-flu feeling.  That is also the feeling that tells me its time for a prednisone.  The ache starts in the lower legs, no specific joint, and if I wait too long, like an hour or more, then its all  over the body, and I am crying.  Then those painful areas in my chest begin to hurt.  I have this round spot, about 6 inches in diameter, right in the middle of my chest that when its time for prednisone, it begins to feel like a rock of concrete.  Makes it difficult to breath, to move, to sit up straight.  And taking a deep breath feels like a punch in the chest.


So yeah...I did it again.  I went home at 10:30, got in my chair, and slept till almost 6.  Woke up feeling no better, took more meds, had a bit to eat that felt like I was eating gravel, and went back to my chair with Netflix.  By morning, I'm (as my dad would say :))  "fine as frog hair".  :)  well "fine" as I get.  I've actually felt pretty good today.  But no over doing it.  See I was already thinking "Hobby Lobby".  I don't need to do that, and I SURELY do not need more yarn.  So.  I'm going to stop at the fast food joint on the way home, pick up some burgers, and point my car in a southern direction.  Hubs and I will do our daily Bible study while we drink our fresh strawberry/mango/pineapple smoothie like we do every day, and I'm going to just take it easy and work on some project, for I have many languishing on the hooks and needles at the moment.  Just breath my lovelies!


Tootles



(aka....The Chronic Stitcher, mover of the hook, clicker of the needles)

At Least Its Not Cancer

Today, I want to high-light a couple of video's from Cass, you can click here to go to her channel and watch all her video's.   As I have said before, you've heard it, people mean well, most of the time, and don't realize what they say is not helpful, and sometimes very invalidating.  Take a look:






The other video is for those who say "well at least RA won't kill you"... Yes...yes it can.


Rest in peace Dawn.



Thursday, May 18, 2017

Wednesday, May 17, 2017

Healing

I have to see Dr. G tomorrow to get my "wounds" looked at.  Its actually looking really good.  Considering I have no immune system at all, I'm surprised it didn't last longer, and get worse.


This is what....3 weeks out?  4 weeks?  It started the weekend of 30 April.  It looks like I may have some scaring.  The big one in the middle, its deep enough to leave a mark.  We'll see.


Feel pretty good today.  No fever, lungs feel ok.  Don't feel very energetic.  But that's because I've been binge watching tv on Netflix until midnight two nights in a row.  I'll never learn.  I love BBC tv.  There was a time BBC America was a pretty decent network, that showed ACTUAL tv shows from the BBC and eventually those turned into shows like CSI Miami, shows that have zip to do with BBC.  But anyway, I digress.  I love BBC mysteries and, IMHO, the Brits have schooled the rest of us on comedy tv from the times of Are You Being Served, and Keeping Up Appearances, and Black Adder.  I love Midsommer Murders, there are so many. 


So Monday night I found this show "Doctor Foster".  And I binge-watched the entire series!!  I couldn't stop, it was that good.  (Did I talk about this already?  I'm having a bell ringing in the back ground....huh...oh well, pardon if I have)  So yeah, if you get the chance, and you like a real good suspense (sorry no murder in this one....although I thought she showed great restraint, I'd have cut off his....oops, don't want to give too much away :)), then watch Doctor Foster.   2 Thumbs up!


Last night, I got to watching "Broadchurch" which was a spine tingler too.  I did skip a couple episodes of this one, just so I could get the light out before midnight, but I watched the last episode and WOW.  I didn't see that one coming, AT ALL.  And David Tennant is in the cast and I believe he was a Dr. Who?  I'm not a Who fan, but I saw him on Top Gear (another BBC Fav of mine, the old crew, not this new one bleh!  Bring back Jeremy Clarkson!  And I've always thought James May was a sexy beast...but that's just me), and I believe during the interview they spoke of his Dr. Who stint.  So yeah, that's a really good one too, and it does indeed have a murder, right off the bat.  I really did not see that end coming, I was blown away. 


But anyway - alls well that ends well.  Till next time!


Update - I had to come back and catch all the typo's.  I know better than to try and multi-task.

Monday, May 15, 2017

Update on my Dad

It wasn't a heart attack, thank God.  But he did get a pacemaker installed this morning, and that went very well.  I went to see him Saturday, he was a bit pale, but other than that he was doing well.  Not even fussy like we expected.  Historically speaking, my father has only been in patient once in his life, now twice.  Born at home during the Depression, he is the type that doesn't go to the doctor, for anything.  But he is doing well, and my brother said the procedure went off without a hitch.  So I may have to swing up there after work and see the old chap again.


Nothing new to report health wise today.  Shingles are, surprisingly, almost gone.  All things considered it looks really good.  The area is still "touchy", meaning it still smarts if I run my hand across it.  But much better than two weeks ago.


The hubs bought two beautiful New York strip steaks and a whole pork tenderloin and we grilled out for Mothers Day.  :)   Our youngest came over after work yesterday morning (he works 7pm till 7 am) and brought me the prettiest card ever!  And DIL gave me a wonderful strawberry smelly candle.  love!  She knows I like smelly things (in a GOOD way, not bad smelly things, just to be clear :).


And no, I didn't hear from the oldest.  Didn't really expect to, but I was...well anyway.


That's all for today.  Till next time, maybe have more things to share.

Friday, May 12, 2017

A Missing Post and Happy Friday

Yes, what I posted yesterday has been removed.  I was venting.  Everything that I feel I need to say to my son is in his Letter.  There's no need to bring it here, because in a way, that makes me no different than he.  So its gone.  I got it out, wrote it down and feel better.  Sometimes that's all we need is to get it out of us.  There's just no easy getting over such profound pain caused by someone you can never stop loving, so you love from a distance.


But anyway!  Its a new day.  Its raining here and yuky.  I can barely breath this morning, but as long as I don't move around to quickly, or bend over a lot (I don't know why bending over makes my heart race....probably the nine-months-pregnant-prednisone-belly look alike).  Not feeling great, but that's the way of it.  One fantastic day, followed by 3 or 4 or more days of blah, hurt, feel bad, run fever, and other assorted things that will remain unmentioned.  For now.  But it is Friday, and for that we are grateful.


I finished the antiviral meds for the shingles.  Its looking very well now, two weeks out.  I have a new picture, but didn't bother to pull it from my phone, and now I don't feel like it, so just imagine.  Its scabbing over nicely (sorry if that's TMI, it just is what it is), I believe I'm on the mend.  Till the next thing.....there's always a next-thing.  And it usually doesn't take long.  I'm hoping I can stay completely well at least until the Fall.  If that were to happen, I would be a happy camper indeed.  So here I sit, still waiting for a phone call telling me to vacate the building, and pick up my check on the way out.  :)


have a great weekend.



Wednesday, May 10, 2017

Feeling Better

The fever finally broke last evening.  I slept very well, well enough that I actually felt like I'd slept.  Thank God for the good days!  I'm going to run errands today :)  yes, run errands, and *maybe* a quickie trip through the LYS (local yarn shop).  One of my friend-girls gifted me a hank of this in a lovely pink/tan color way.  You really can't do a lot with just one hank, and I want to turn it into a shawl, so I need another one.


The rash is even much better this morning.


Yes, I'm feeling good today. :)  I hope it last all day.  What a difference a day makes with this disease.






I wish I could still move like James Brown.  :)  I danced all night long, came home with the sun, many times. 


Everybody have a "feel-good" day, and dance like nobody is watching.

Tuesday, May 9, 2017

If They Only Knew

How I really feel when I smile and say "I'm ok".  If how I felt on the inside, could show on the outside, people would run screaming "get a doctor!".  :)  If they only knew how it feels to breath through a straw, all the time.


People mean well.  They really do.  I credit them that.  Most times, not all the time, but most times, peoples hearts are in the right place, and they say what they say and mean well.  When I tell them the statistics of this lung disease, I usually get poo-poo'ed and told I'm in God's hands.  Yes, that is very true.  But just because I'm a believer, doesn't automatically mean I'm going to be miraculously healed, nor live 20 years (as evidenced by the number of funerals of Good Christian People that happen every day).  I believe I've talked about this before.  At this point, my faith in God is bigger than my faith in my body.  I am indeed on His time clock.  "Oh! I'm going to pray you live to be 70!"  I looked at her in horror and said "Please don't"  You'd have thought I told her I had decided to become a Buddhist.  "Why?" she asked in shock.  "I wouldn't wish another 25 or 30 or even 10 years of this monster, on my worst enemy.  Please just let God do His thing, have His will in my life.  I covet all prayer, so please just pray that He will give me courage to face it, strength to endure it, and the ability to allow it to be a testimony, and most especially whatever happens to me, will bring glory to Him, and help somebody else."


If they only knew how it feels to be "poo-poo'ed" and "Pishawed" when all I'm doing is telling you what you asked.  If they only knew how marginalized and disenfranchised  it makes me feel when that happens.  To the point, that I've stopped talking.  "I've heard that's a bad diagnosis!"  Naaa, its going to be alright.  Its all good.  Stay off WebMD (as I've been told to do, in other words, don't be informed, whatever you do).  LOL, I have to laugh.  People mean well, most of the time.  And the realities of RA *need* to be talked about.  A lot.  And loudly.  So I am sure my opinion on the not talking about it anymore to anyone, will probably not last.


It is now May.  Bosses asked me back in December what I needed from them.  I told them.  And if they'd listened to me, I'd be in another office somewhere with a lot less visibility, and my replacement would be sitting here and up and running.  Its MAY.  May people.  I should have already been gone.  I'll probably expire before the paper work works its way through the large and small intestine of this Big-Arss-Company. 


I don't feel good today.  Does it show?  Waking up with fever at 5:00am will do that to a person.  Its 9:00am, and its still not gone completely.  And this is *with* prednisone on time.  Sick and tired of being sick and tired.  Tired of hurting.  Tired of running fever.  Tired of catching every thing that blows in the wind.  Just plain tired.    And as this has quickly devolved into a whine-fest, I will leave off.  With promises of better days ahead.  ya'll be sweet.

Monday, May 8, 2017

It Usually Gets Worse Before It Gets Better

Remember this?




It turned into this:




And that's just the one place.  Its even on the top of my arm.  That being said, I Googled.....this could have been much worse.  Much much worse.  However, the pain *has* to be as bad.  This one spot feels like there's a hot curling iron tapped to it.  This is painful, people.  And I'm still running a tiny bit of fever off and on.  Nothing major, just enough to feel like crap, like this doesn't make me feel bad enough.  Even still, I'm lucky and blessed.  I've seen the pictures of others.


Anywhooo - I'm back here at Smart Guys & Smart Gals In Ties, doing my thing.  Or as best as I can do my thing.  Every time I have to go home sick for a few days, its getting harder and harder to come back here.  And I really need to get something better than my Kindle to blog from.  My bad eyes + stylus = a hot blogging mess.  We have a "normal" tower style Dell, but hubs uses that mostly, I rarely ever get on the thing, I'm on this one all day at work.  But I don't want to blog from there because nobody in my family knows about this blog.  I don't want them to until after I'm gone.  And you know how Google is.  Google wants everybody to know everything about you, and this thing will pop up somewhere in the history or trash or Google.  So I have never signed into Google or this blog, on the home computer.  Only on my Kindle.  Something to think about.  I've been eyeballing those nifty thin new tablets that have a real keyboard.  But I don't want to spend eleventy-jillion dollars for one.  That's one reason I opted for a new Kindle Fire tablet.  It does it all, and I LOVE it.  but it doesn't have a for-real keyboard.  I wonder........I wonder does Amazon have a Kindle that I could plug a small portable keyboard into.  I'll have to check on that.  but anyways - I'm back.  I have to keep the wounds covered so people don't freak, and I'm keeping to myself over here in my cage, staying away from people.  Just trying to catch up, and find the feel good.  And I can see by the traffic meter, I wasn't missed anyway.  So yeah, I'm special.  Special Ed.....  :)  LOL.


So go have a good day.  And be sweet!


PS...I'm hoping the next thing I get isn't so painful.

Saturday, May 6, 2017

Houston We have a diagnosis

Pardon me if this post looks and sounds like a 5 year old im doing this from my Kindle.

Shingles.  At home till Monday.  I'm afraid to ask what's next. what it looks like now.  My arm looks like it was an extra in the movie *Saw*.

Wednesday, May 3, 2017

At home

At home until after I. see Dr g tomorrow.  Battling fever and the rash has spread and its painful.    Didn't work today. I will return soon.   can.  Oh also two new nodules on my hand.  Every joint in my left arm is hot and swollen

Tuesday, May 2, 2017

Mystery Rash Day 2 - A Nodule - And a Dr. Appointment - UPDATED I added a couple of pics

Yeah, so when I got home yesterday from work, my arm just looked angry, that's the best word I can find.  And it looked discolored and even distorted looking, misshapen in the fore arm.  So I got out the measuring tape, and the  hubs took the measurements.  The left arm was nearly a full inch bigger.  This is crazy.  Now...this morning, its not nearly so swollen.  But the rash is just as angry as it was yesterday, and its spreading.  I took some new pictures, but my network is not letting them go through, so you will just have to use your imagination.






And even stranger, I have what looks like an RA nodule on my thumb and its hot and red, and there's a new nodule forming at the base of the thumb.  Strange because out of all of it, THIS hurts the worst.  My thumb joint is tender and so is the shoulder joint.  The entire arm just feels "sick"




My upper arm/bicep is so......sore.  And my skin is still hurty just to rub my hand up and down my arm, and my shoulder joint is tender and warm. 




Is this a flare or not?  It seems like it might be nerve driven, my neck has been hurting.  Then there are RA flare symptoms, the nodules, the heat and stiffness in the thumb and shoulder.


I went down stairs and saw the work-doctor (he's a real doctor, retired from the local hospital several years ago, and now he comes here a couple times a week) and he said that it looks like poison ivy/oak.  I've never been allergic to those, and there's none in our yard, and I don't go out in the yard much anyway.  but ok, I'll buy it.  He said the dog could have gotten it on her when she went out to pee, and brought it inside.  And just because I've never been allergic to those before, doesn't mean I'm not still, ok I'll buy that.  He also said, that it could be "triggering" the RA symptoms, the heat in the two joints, the nodules, the stiffness.  Huh.  Makes sense.  maybe my almost-non-existent immune system is trying to do something about the rash, and hey "since we're here and bothering, lets crank down on the shoulder and thumb joints, might as well!  Ya SHEENA!" and bam!  I'm in a mini-flare.


Could it be?  Its plausible.  Well, anyway.  I'll update with new pics soon as I can get them off my phone.  I have an appointment with Dr. G on Thursday to get his opinion on it, and maybe some cream.  Work doctor said "I don't think its shingles due to the way its patterning"  shingles?  huh.  that never crossed my mind.  Lets let Dr. G take a look.  He'll know what to do.


I don't think its another DVT.  And work-doctor thinks the swelling part is due to the blood draw at Dr. Eye's two weeks ago (2 weeks ago and I'm STILL bruised.  her new phlebotomist is horrible at it!) because you can see where hits humped up there right where she stuck me.


Dang, I wish those pictures would come through.  *sigh*  any way.  My left arm is a hot mess.  Hell my whole body is a hot mess, a train wreck.  te hehe.


To be continued.......


The pictures finally came through, although they are not that good:


Its spreading up my arm.  I also have a spot on my upper
bicep. 






Thumb Nodule - sorry so blurry my phone camera is crappy
See how red and angry??!!  THIS hurts worse than the rash



Monday, May 1, 2017

A Rash And A Sore Arm

I'm thinking that I probably should switch arms for my weekly Humira.  After the injection Friday, by Saturday, my whole arm was sore to the touch, like just rubbing my hand over my skin, hurt.  Like maybe "nerves", which if that's the case, then the Humira injection had nothing to do with this.  But anyway, by last night, I have this on my fore arm, just above the wrist:



My index finger on this hand, feels like it has pins and needles in it, and my middle finger (the birdie finger) next to it, keeps twitching, which again, tells me nerves.  I do have this crappy neck, oh, and its been hurting a bit too.  The muscle in my upper arm (biceps?) are really sore to the touch, and yesterday it actually looked a little swollen.  Then I thought, "oh no.....another DVT?"  But I don't think so.  Now that I've thought it out and written it out, I think its my neck rubbing a nerve.  But would it cause a rash like this?  So, maybe not injection at all, I dunno.  but it this rash gets any worse, I guess I'll have to get it checked out.  Its always something.