Sunday, April 8, 2018

A quick check in - and never trust autoimmune

I woke this morning, and as I usually do, I gave myself the mental once-over, then got up and moved around a bit and thought...."Oh man!!  very little swelling.  :)  its gonna be a good day"  *cue that X noise you get with a bad answer on Family Feud*.    I started thinking about all the stuff I was going to get done, and within 2 hours of getting up, feel good was gone, fever back firmly at 100, face flushed and hot, tummy sick.  Well at least I got most of my laundry done, and got the dishes loaded and washed.  its all good I guess :/  I still cry a lot.  Frustration, pain, fear.  I'm just ready for it to stop now.  I need a break.  Its been since February now.  I am tired.

Nothing new to pass, anything at this point would just be a repeat.  Still fighting this hellacious flare, tired beyond imagination.  Keep sending me good vibes and prayer for strength to keep going.  This is going into week 8 now, I think.  7 or 8.  The pollen should begin to move on soon, I should begin to feel better.  haha  but you never know what you'll get.

Keep on truckin, and we'll talk soon.

Tuesday, April 3, 2018

Still In The Fight

Because what choice do we have?  Oh yes.  Even just as recently as this weekend I proclaimed, this is the Last Flare.  No more. I'm done, stick a fork in me, done and dusted.  The Mr. just looks at me like 1) I have some supernatural gnostic information he's not privy too, or 2) I'm going to off myself....closer to 2 because I sure am not "enlightened" and don't want to be.  All that New Age-y stuff is for some, and more power to you, but not for me.  Not my flavor.  But yeah, I decided enough was enough.  And then the fever breaks, and we feel a little better, for a little while, and clarity in thinking returns (we hope).

Still in the fight.  I've been up since 3:30 this morning.  Woke up with over 101 fever.  It was on one of those tick marks  between 101 and 102.  It doesn't usually get that high.  I think I need to be even more diligent about keeping up with the roid doses.  I've not written anything down for yesterday, and whats the point?  Its not like I can REMEMBER when I took it.  I can only move forward from today.  Any who - I had one ibuprofen, and Dr. G said one a day for 3 days in a row was ok, but after 3 days, I have to break off for a week.  So I had one left, and I took that and a Tylenol and 5mg of prednisone.  It came down in a bout an hour, but still at 100, so at 4:30 I took a full 10mg prednisone and drank plenty of ice water to help cool me down.  I fell back to sleep and woke up at 6:30 drenched in sweat, but temp was normal.  These are things we suffer.  Things that nobody would even know about if I didn't tell them.  And most times I don't.  what can anybody do?

Momentous decision - I have found a new Pulmonologist, and will be requesting a referral from Dr. G as soon as this flare goes away.  I want all new test, fresh new eyes that have never seen my lungs, I want a fresh perspective.  I am also seriously considering a new GP. 

I love Dr. G.  I've been seeing him 24 years now.  But I just can't forget nor get over, my sitting in his exam room back in October, he sitting on the stool across the room from me, me crying because I was so sick, and had been for many many months, ticking off, what ended up being classic effusion symptoms on turbo, his saying the air flow was diminished up to my shoulder blade making me think the ILD was progressing hard, and he just sitting there with his chin in his palm and nodding his head at me.  Why not get a chest xray?  The machine is just down the hall, he has all his own equipment.  But no.  He sat there and watched me cry as I talked about how sick I felt, literally feeling myself dying, and that's the truth.  And all I needed was a drain???  I can't forget that.  I became the proverbial "dropped ball".  and because of that, I nearly lost the bottom 1/2 of my damn lung.  Because of either their lack of care, "she's a drama queen", "she's making this up", what ever he was thinking doesn't matter.  What the hell would have been wrong taking 10 minutes to snap an xray, my insurance would have gladly paid him for????????  why?????  If he had taken that xray that day in October, I probably would already have had the drain tube, and would have been feeling much better.  IBS?  More likely the quart of fluid that was on my lung was pushing everything to the right, into my stomach and my heart.  See, this is stuff he utterly failed to discuss with me.  Utterly failed.

But it is what it is.  Baby steps.  First - get on the other side of this flare.  Second - Get a referral to the new Pulmonologist.  After all new test and his new assessment to my condition and my future, then I think I will begin to look for a new GP.  At this point, no plans to replace Dr. Wonderful the rheumy.  And she's the one that should go first.  But!  Again, she really doesn't do a thing for me except prescribe the Humira and the prednisone.  She doesn't even order xrays on me.  A means to an end.  I really don't need a new rheumy.  she does just enough that I don't have to travel to get to a new one as I will be with the new pulmonologist (which will be totally worth the drive to get a second opinion). 

So that's where I am today.  The flare keeps going, I keep fighting.  And I keep trying to have as great fulfilled life as my body will allow.  I'm crafting again.  And that makes me SO very happy.  :)

Ya'll be sweet.

PS - Shout out to Tom!  Thanks for coming by.  I promise to be more diligent in keeping up with comments. 

Sunday, April 1, 2018

The Flare Rages on

Do you know what?  I just realized I had comments sitting out there for who knows how long and I never got any ringy-ding notice or anything.  So to any who've commented, I'm sorry I'm a dork when it comes to techy stuff.  A serious dork.  They are all now published.  Even though the other entries are "in the dark" at the moment.  We'll get through this ok? ok... ok.

Got a steroid blast at noon on Thursday that lasted about 30 hours.  That's really all I ever get out of those, so no surprises.  I'm back to about 30 to 35mg of prednisone by mouth.  Face is adequately bloated to prove it.  *sigh*

I had a debate with myself about sleeping through the night, or waking up to take prednisone.  I've been opting for sleeping through the night, and that's really not working.  Friends, I wake up and its like my right lung is filled with helium.  I've been telling people I feel like a greater-than-sign <  (or is that less than...I can never tell).  but that's what it feels like.  left lung "normal" for me, right lung OMG!!!ITS SO SWOLLEN!  yeah, it gets like that.  It hasn't cracked ribs again, yet, but this has been a bad one.  And still at least 3 weeks more to go, before the pollen numbers begin to fall, and my lung simmers down.

While the lung was under the influence of the steroid blast and I had minimal swelling, we attempted a drain, and managed to get 75ml of a substance that looked like strawberry sorbet left out on the porch for two days.  then the tube completely clogged up with what the Mr. said "...its the consistency of sausage casing..."  umm.  yeah.  so.  I see an out-patient procedure in my near future, within 3 weeks anyway.  Still, though, feeling the relief of just that much fluid.

The fever rages on.  However!!  Today, for the first time in 6 weeks, it finally responded to just Tylenol!  I took two Tylenol Arthritis and in about 45 minutes, I was sweating and it was coming down.  Yay!!!  I've only been fever free 3 times in the last 5 weeks.  I can't get it below 99.  So double Yay!!  on that.

Its been a bad ride, and it aint over yet.  Keep sending me good vibes and prayers.  I'll try and come back more often now.  Its just been one helluva month.  After feeling so so so good after the "big drain" back in December.  That's all gone now.  But I'm sure it will return once the tube is sorted out and "fixed".

TaTa till next time - Gentle Hugs!

Monday, March 19, 2018

still here

Much has happened since my last post.  And speaking of "post", the 2 or 4 people who actually used to stop by here, you'll notice all my posts are gone.  There's a reason, that I just can't go into today.  A lot has happened as I said and I'll keep it brief:

The Short Version:

The drain tube has stopped functioning, and I have not had a successful drain since 22 Feb.  I am also in the middle of a darn good lung flare, wherein both are hurting.  Most especially the right one that has the tube in it, of course.  The prednisone taper came to a halt, and I am now up to 25mgs every 24 hours just to stay on top of it, and may make an appointment for Friday with GP...just in case.  Tube doctors keeps saying "...its normal keep trying once a week..."  *shake my head*, more to say on that another day.

Had appointment with pulmonologist last week, which ended up being a complete joke, and I'm searching for a new one.  Much to say on that when/if I come back.  Running fever every day, and some day's its very stubborn and just will...not....stop.  Not high, never over 100, but just enough to make one feel like sh*t.  And the "sick" is coming back too.  *sigh* one listens.

Pollen counts are through the stratosphere.

Wednesday, January 24, 2018

Second Post-Op Check up

Saw Dr. C the surgeon yesterday.  Good news and some not-great-but-livable news.

Good news - I'm still losing weight.  I'm thinking fluid, and less prednisone.  More good news, I'm still feeling really good.  However, as I think I already mentioned, with the prednisone taper, the RA is waking up in my joints.  My neck nearly kills me every day.  Its bothering my hands, which it never did before.  Yesterday I had to go into town after work and it was almost 6 when I got home.  everthing had worn off.  And every joint in my body, it felt like, was throbbing, even my jaw.  But its not as bad as it could be.  Soon as I got home I took my prednisone and something for pain.  It took about an hour, but it got better. 

Not so good news - He took a chest xray and the lining around my right lung is not healing as it should.  Its still pooched out from all that fluid being there for so long.  Dr. C said I may have the drain tube for life.  I say as long as that's what it takes to keep me feeling better, so be it.

Bad news - Insurance deductibles start over in January as we all know.  Its time to order drain kits, and I have a $350 deductible for medical supplies.  Which means I'm going to the bank today to take out a loan.  **sigh**  It is what it is.  And next time I have to order, it will only be $120.  This is an expensive disease.

Good news - I'm still feeling so good.  I still have bad times when I don't feel so good, but that's RA.  Over all, I am a million times better than I was just two months ago.  I will not complain.

My Rheumy appointment with dr. eye is next week.  That is going to be interesting.  I will surely be updating on that.  I can't wait.

Ta Ta till later

Tuesday, January 9, 2018

Still Doing Very Well

Just wanted to check in.  Still feeling very well.  My neck, oh my neck.  It is killing me, and I know its because I am tapering the prednisone.  My neck has not hurt in I don't even know how long its been, its been quite a while.  The lungs are hurty, but that could be due to the recent trauma.  My hands hurt.  But yet, There are those worse off, God bless them, and I mean that.  I'm looking at you Cass, my friend.  I wish I had some fairy dust or a magic wand that could make you better.  Hang in there hun!

But as for me, other than the aches and pains of the RA waking up due to less prednisone, other than that, I'm still feeling very well.  I've felt bad for nearly two years *shake my head*, two years and all it took was a drain.  Well, anyway.

Its a short one today, Just checking in to say "hi".

Thursday, January 4, 2018

Validated - Vendicated

Had my appointment with Dr. G today, it went well.  I didn't tell him everything that *other* doctor said, but I did bring up the prednisone, and he totally agreed with me, and when I said "she tried to BS me to make her point"  he agreed with me.  He said "keep tapering, SLOWLY, and if the wheels start to come off, stop tapering and call me".  Then I told him what she said about how I'm not so bad off.  He said "as far as the RA in your joints, no yours is not that bad (I've never denied this, I know this), but as far as what is happening to your lungs, *that* is very significant and can not be downplayed"  and I said "And just because there are those worse off, does not diminish nor invalidate my condition"  and he said "that's right, it does not.  She shouldn't have said that to you". 


All in all, it was good.  He seemed as pleased as I am about how much better I am, even he said "you look a whole lot better than you did last time I saw you".  Then he verified that there is indeed air coming out of the bottom of my lung again.  He said that at the very bottom, there's still no air, but just about 2 inches up, there's air.  And its full on at my shoulder blade, where just in October that was deminishing.  Yay!  He also told me he'd seen all the reports and the HRCT and that the effusion was indeed much worse than it had been in July.  I have a feeling....he's probably going to share those with Dr. Eye.  Good.  Share away!  She needs a set-down.  Still, I will never respect her again, nor trust her...a means to an end.

The Mr. drained me last night, and only about 40cc of liquid came out.  Every drain is lower and lower.  That is a good thing!!  I have to call the surgeon's office tomorrow to find out when I need to come back, and give them the drain amounts.

Friends, honestly, I haven't felt this good in over a year.  It is amazing what just enough oxygen to the brain will do for you.  It still hurts to take a deep breath, it still hurts to cough or sneeze.  But the light head is gone, the dizzy is gone, I can EAT A MEAL and still walk and talk at the same time. 
As far as the tapering, its going ok.  I have said that when the RA hit the lungs and eyes, its like it went into remission in the joints, I even stopped having morning stiffness.  Well, its waking up.  My neck has been hurting for days, and that hasn't hurt in months and months.  My hands, that the RA has never affected, are hurty.  But still, there are indeed those worse off than me.  And ya'll have heard me say how guilty I feel sometimes because I don't suffer as much as some, and I have always responded very well to the meds.  I am NOT ungrateful.  I am blessed!  And if I can get back to just 10mg a day on the prednisone, I can put up with a stiff hurty neck and hurty hands, if it means the moon face will go away, the belly will shrink, and I can be my happy self again, and not the raging prednisone-bitch I had become.  And still am to a point, although I have learned to rein it in, it still rears its ugly head sometimes, especially in traffic.  Prednisone gave me road rage.  :/

But anywho -   I'm so much better.  I just can't say that enough.  I was so sick, for so long, I had literally forgotten what "feel good" felt like.  Blessed.  And giving my Creator the glory.

Its so damn cold here, it was 18 degrees when I got up yesterday, and most days it doesn't get passed freezing at 32.  That plays havoc with the RA, but I'm managing.  The Norco keeps me on top of any pain.  But still ready for some warmer days.  However, the sun is shinning gloriously bright today.  And that makes me smile.  :)  And the fact that its pay day doesn't hurt!

Still have made no decision about my appeal for early retirement.  The letter I got was dated 13 December, I got it the day I got out of the hospital.  They give me 30 days to respond, where in there was also TWO major holidays in there.  There is absolutely no point in appealing with out new, updated medical information, and there's not time for that.  There is one more avenue I can take, but I haven't checked out all the details.  Its called voluntary early retirement, but comes without the disability payments, and I'm not sure how that works with health insurance.  So I don't know.  To be honest, if I can continue to feel this good, I can keep working.  I no longer feel like I'm dying next week.  And when I start to feel bad again, I'll know what's probably causing it, and get it taken care of.  Yes the lung disease is progressive, no there's no cure.  But if we can keep it on the slow, and take better care of myself, maybe...just maybe, I may have a few years left yet in me.  But we all know how unpredictable it is.  Still, I feel so much better, I can't help but hope.  I have had so many people tell me "wow, your face is so bright!"  "boy you sure are a lot pinker than you used to be"  "your black eyes are gone".  Now, if I can drop about 50 pounds I've gained in the last two years, I'll have nothing else to hope for.  :)

So I'm leaving you today on a good note and a smile.  :)  I'm better!  I'm not cured, I still have issues (neck pain, chest pain, etc etc), but I'm so much better.

Ya'll be sweet, and we'll talk again soon.