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.

No comments:

Post a Comment