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A Day Out Amongst the Normals

A Day Out Amongst the Normals

Today was a day for doing. I had a meeting in the early afternoon and just getting ready and getting out there seemed foreign to me.  I wouldn’t say I just realized that I’ve isolated this past year, but doing ‘normal’ things and having them feel so strange is a reminder for me to get out there. I’ve bubbled myself in this house and it feels really good to get out and do anything that’s not illness related.

So I meet my brother in the early afternoon for this appointment with a lawyer.  We’re talking and after we conclude our business she asks “So, which one of you is older?” Holy shit. I just looked across the table at J and said “Uh, he is.” My brother is almost 8 years older than me. Has hunkering down in my house for a year aged me like, a decade?? I already have issues with being 45. I don’t know when it happened. I was 35 and then bam! 45. Time is just flying by. Anyway, we head back towards home to let the dogs out and we have to be at my mom’s house at 6 for dinner. I made her a journal/planner thingy and I wanted to give it to her tonight, but our printer is out of ink.  So I put all the files on a flash drive to print it out at a store.  C says lets stop at the drug store down the street, they have a kiosk there where we can print them out.  We get into the store and I swear, I’m feeling like I’ve never been inside a drug store before.  I started to get that pre-panic attack feeling in my chest. We head into the camera department and find the kiosk and I couldn’t find the slot for the flash drive. I’m looking all over the machine and instead of asking someone for help I’m determined to find the dang slot. I had to ask. Turns out it’s hanging off the machine on the end of a cord. By then the Bean is all over the place. She’s tired from being in the car half the day and her blood sugars are low. She’s trying to climb on the unreasonably tall chair they have in front of the kiosk and simultaneously asking when we’re going to be at Nana’s house for the millionth time. I spend like 5 minutes going through the two thousand files (literally) that is on his flash drive and I’m not seeing the files. I realize that I forgot to save them as jpegs. They’re in psd format and the stupid machine doesn’t recognize them. By now it’s 4:30 and we jam back home so I can process them. Photoshop crashes about 5 times and what would only take a few minutes took a half hour. I’m a total wreck trying to get these files changed while C and Bean are waiting in the car. :/ By this time I don’t want to go back to the drug store. So we stop at a copy place on the way. The guy that works there tells us the machines only recognize pdf’s and power points and I’m thinking ‘whaaaa?’ He says he can put the flash drive in his computer behind the desk and print them out for me. It’s his cashier computer and he turns the screen and starts going through what I recognize as Window’s tutorials. I’m totally having a panic attack now. Bean is floppy, like flinging herself around the store.  When C walks over to peel her off of a woman that’s working there Bean says ‘Grampa’ and the woman stops what she’s doing looks at C and says “NO WAY!!! You’re WAY to young to be a grampa!” After not being recognized as younger than 53 earlier, hearing her say that to C made me want to slap her.  Or slap him for looking so dang young all the time. The clerk behind the counter is rambling something at me about his computer freezing and all I can hear is ‘wah wah wah’ and I feel that sweat drip down my neck and I look at C and he’s looking back at me like ‘I can’t help it!’ and I started giggling. Yes, I did. Inappropriate laughter-I’m always good for that. Bean looks at me and starts laughing because I am and then it’s infectious. I just want the damn print outs and I want out of the store and Bean is belly laughing. It took forever and 27 bucks and half of the papers with the tops cut off of the pictures later and we made it out of the store.

I HAVE to get out more regularly. I felt weird today, like people could tell that I felt uncomfortable. Physically though, I think I’m doing pretty good. I guess I’ll find out tomorrow morning if I overdid it today. Totally off topic but far more interesting-today is David Bowie’s birthday.  And I look way younger than him! If you’ve made it this far through my really boring and panic-filled day you deserve some Bowie. Click here for awesomeness.

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

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