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.

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.



Friday, April 28, 2017

Melt Down

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


Circa 1964

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


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


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


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

Tuesday, April 25, 2017

Feeling Guilty For Feeling Good

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


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


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


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


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


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



Monday, April 24, 2017

I Had To Go Away For A Few Days

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


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


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


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


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


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


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


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

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

Tuesday, April 18, 2017

Don't Take Meds In The Dark

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


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


 lol....I'm strung out on prednisone.


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


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

Monday, April 17, 2017

Somtimes Depression is a Symptom

I'm depressed.  *sigh*


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


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




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


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


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


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


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