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Counting my blessings

Counting my blessings

I love this shot.  I really kicked up the contrast and colors, but even with no touch up, it is a pretty flower.  These past few months for us as a family have been extremely challenging.  Lot’s of illness, family issues, money, surgeries, pain, I need to come back to simple to get through all of this.  As usual my Big C is amazing, incredibly helpful, he is my biggest fan.  I’m his although he says he loves me more.  pffff, haha.

I’m recovering from one of the worst intestinal bugs I’ve ever had.  It’s been about 2 weeks and I’m FINALLY starting to be able to keep food down.  Well, I lost weight!!  I’ve been stuck at a certain weight for 3 months now and this illness got me down 14 pounds, woot! I wouldn’t recommend the ‘barf and poop off the pounds plan’ but I got it for free so I’ll take it.  🙂  I went through a high fever and much pain and my mind would roll and roll whether I was awake or not.  I remember thinking, Is pain an emotion?  At time when the pain and sickness is so bad that I don’t think I can do it for one more minute-I can feel the depression like a physical pain. And when my body starts to heal of course the cloud gets lifted and even the pain doesn’t feel so bad.  You’ll have to excuse my ‘whoooaaaa’ little epiphanies, my brain is running behind a little bit.  I’m taking it minute by minute and getting back to simple. Family, flowers, all the things that make you smile.

OK. I’m coming back. Again.

until next time

Coma sleep, with a side of hot burning legs please

Coma sleep, with a side of hot burning legs please

I don’t want to order that but it’s been on my plate now for a few months.  I’m starting to get really discouraged and depressed.  My Rheumatologist wanted to see me the next time my hands blew up.  (they actually blow up, it’s gross) So anyway, I’m flaring really hard and always as a precursor to a flare, my knuckles get really red, like shiny red, my eyelids become really swollen on top and hang over my lids (gosh I feel sexy just typing this…) and then my hands start to split open all over the place.  Sometimes they swell in my sleep, sometimes not, but either way they are monstrous.  Soooo, 2 weeks ago my hands start up again.  But I forget I’m supposed to go in.  Towards the end of the monster hand I remember and call him up.  I get to see him the next day and they are pretty much healed.

He says he can still see the damage and it looks like the dermatomyositis.  Okayy.  He ran the whole shebang of labs; ANA, sed, C-reactive, Comprehensive Chemistry, RA factor, and anything else he could scribbble in.  So I call this morning to find out the results and the nurse comes on the line and tells me that Dr. wants to speak with me personally and set up a plan of action.  So I wait. And wait.  I’m thinking all of the worst things imaginable since I am such an optimist at this point in my life….why in the hell couldn’t she just tell me the numbers, she always does… finally I call and tell the receptionist I am in the throes of anxiety waiting for the call.  She informs me in an official tone that ‘Doctor is still seeing patients and cannot come to the phone. He will ring me after 5.’  Well, luckily I went back into my coma sleep so I didn’t have to smack everyone’s hands off the phone.  I so smartly decided months ago to cancel call waiting because it bugged the crap out of me whenever I was on the phone hearing that beep beep beep, only for it to be a telemarketer, or bill collector.  Right at 5 he calls and tells me that other than my ANA being positive, all of my numbers look pretty good just like last time.  He says we’re damned if we do, and damned if we don’t.  I don’t ask him what we’re damning about because I’m pissed that I worried all day for this.  He told me the plaquenil could very well be keeping my numbers at bay. Well, it’s not keeping my symptoms at bay.  I’m sick and tired of being sick and tired.

When I first came to him before I got on any meds, my numbers were through the roof and I couldn’t walk without assistance.  My PCP told me I had Lupus (prematurely based on one lab test) and my Rheumy was hesitant to say for sure what we were looking at; RA with some dermatomyositis and palindromic rheumatism thrown in for good measure.   That’s what the labs and symptoms told him.  Now he says the plaquenil is working, I’m walking much better, my numbers are low but I’m flaring more often than not.  I’m frustrated that I get a diagnosis, then have it taken away.  Again and again.  Right now I’m back to Undifferentiated Autoimmune Vascular Disease or Undifferentiated Autoimmune Disease, Connective Tissue Disease… Then it will be MCTD, then back to the early RA with dermatomyositis and so on.  Never in my life have I WANTED a diagnosis, til now, I just want to make sure I’m on the right meds for the right disease.  I don’t want any joint damage.  We tried methotrexate but it made my legs freeze and burn right down to the bone so he discontinued that but didn’t try anything else.  One thing he says he is sure of is it’s not Lupus like everyone thought in the beginning.

Is this a rambly confusing post from a frustrated woman?  Yes.  I haven’t posted much of anything lately because I have just been too sick to even want to sit down and type.  But last night I couldn’t sleep a wink after 1:30 so here I am!  I’m going to post a pic of my hands when they were on the mend.  You can see the rashy red spots, but there were no splits in this shot. I also got turned on to a video on myositis, it touches on the basics, but it’s interesting and it’s good to see someone talking about it.  And last but not least, I  posted some more photos in the Happy Snaps.  Those are cool and stress free, LOL.  Every shot I’ve gotten so far has been right in our yard.  I’m lucky to have such beautiful flowers pop up.

Today will be a better day!!

Until next time

Pink Hearts

Pink Hearts

Here it is, finally!  Aren’t they beautiful?  I just think that it’s so cool that there are flowers shaped like hearts.  But then again, I’m easily impressed.  Just about everything is in bloom, I’ve gotta get out there today and get some shots.

Enjoy!

I REALLY wanted to post flowers

I REALLY wanted to post flowers

but try as I might WordPress wouldn’t let me, dang it. I got a really great shot of these floating hearts flowers that I saw in our backyard. I could swear they weren’t there last year, but the Big C says they were. Can’t believe I never noticed them before. Anyway, I got this great shot before I became bed ridden and I wanted to share. That’s so frustrating. We finally updated WordPress and I’m pretty sure that’s the culprit… once we find the glitch, I’ll post it. They’re loverly. You’re just gonna have to trust me on this one.

It has been sooo long since I have posted. I’ve really missed it for sure. I have been in the worst flare I’ve ever had. I know, I know, how hard is it to post something, anything? It was that bad… Then, I got the flu. This is the first flu I’ve had since I acquired all of my fun little autoimmune issues, and man. I wouldn’t wish it on anyone. ANYONE. Is it just me or are colds/flus more severe when you have an autoimmune disease? There were moments when I wanted to die, and then moments when I was asking the Big C to just kill me and get it over with. It felt like slow, extremely painful torture. OK, anyway, I thought I was getting well yesterday but it was just a cruel trick my body played on me because today it was like it started all over again. I became so weak from coughing I couldn’t reach over the side of the bed to grab the channel changer and there was this really cheesy movie on starring Jamie Lee Curtis and Billy Baldwin. Yes, I was trapped watching it and I couldn’t look away. They were on a ship and there was some new life force that was made from electricity and it was killing everyone….oh it was so bad it was great. OK, I’m going to take a sleeping pill, prop my pillows so I can sleep sitting up~again.  BTW, it’s good to be back!

Until next time

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