headermask image

header image

It’s been a while…

since I’ve posted anything! The bean says that ain’t cool, and you can tell by the goggles-she’s cool.  These last few weeks have been full of flares and sleep.  Not a lot of fun, and sure not postworthy unless I wanted to get on here and whine-aaaaarrrrgh!

I’m gonna whine a little anyway… he he  I did go and get my biopsies done. We had to go to a bigger hospital than what we have here.  It took 5 months to get in to see this neuromuscular surgeon.  So frustrating.  My burning symptoms have just gotten worse and worse, and even though I knew that just by having the punch biopsies done my burning wasn’t going to go away, I was still frustrated.  No one should have to wait 5 months for an appointment.  When the day came I was so nervous I couldn’t eat anything, so by the time we got there I was starving. We were running late because traffic was really heavy and even though we left 2 hours before the appointment and the drive is an hour and a half, we just barely made it on time.  When we got up to the right floor and found the desk, I handed the receptionist this form that they sent me to fill out prior to the appointment.  She stared at me with an expectant look on her face.  “yeesss?” (I blame my rudeness on low blood sugar)  She said “Didn’t you receive the packet we mailed out to you?”  Ah, shit.  It’s five minutes past the appointment time and she says, “Don’t worry.  Just fill out as much as you can so the medical assistant doesn’t get mad.” WTF?  So, she hands me this packet that’s about half as thick as the phone book and I glance to the left of me where another woman was checking in and she was just reaching out to grab the ‘packet’.  Somebody must’ve been sleeping on mail-all-the-packets-out day.  So we found a seat and I started answering a million questions while my stomach rumbled and grumbled.  I didn’t have any addresses for my docs, or fax numbers and such, and then I answered every question pertaining to my health known to man.  I actually finished it and turned it in.  Finally the medical assistant called me back, and she was nice ( I finished my packet) and we got situated in the room.  When the doc came in he looked tired and cranky and he said “So, they forgot about you.  I’ve been sitting in my office reading for the last hour.”  Turns out the front desk forgot to check me in on the computer and me and the doc both were sitting there for an hour.  Me frantically filling in questions and him reading.  By now I’m so hungry I’m shaky.  So the doc is really cranky and all I can think about is getting the heck out of there so I can eat.  He tells me his partner is going to perfom the biopsies and he leaves the room.  So I’m laying on the table and I’m dreaming of taco bell, jack in the box, biiiig milkshakes, aaaggghhh.  The Doc decides to do them on my left leg because he said that was the worst leg when it came to all of the manual tests-push, pull, poke with a pin, etc.  His partner tells me that she is going to use sterile technique to help ensure no infection will come about.  She says that we have to be careful of infection.  I watch her set up the tray and glove herself and drape me, and what she doesn’t know is that my profession is a medical assistant and had I done that type of sterile technique at work I would have been fired.  It was all wrong!  She leaned her body over the field, no sterile gloves, ugh, and so on.  Oh gawd, I’m already thinking of getting the worst staph infection in the history of, or MRSA or anything completely irrational.  She had me lay on my side and she injected my hip first with a numb-er, I think she said lidocaine, and that hurt like a bitch.  It burned and I squeezed The Big C’s hand and laughed which is what I always do when I’m nervous..it’s like a nervous tic only way more socially unacceptable.  The rest I couldn’t see from my vantage point but C said it was way cool.  This little tool she pushed up against my skin and twisted and twisted. Then she pulled it out and used teeny tiny tweezers and scissors to grab it and put it in a jar.  She did the same on my lower leg above my ankle which burned a million times worse than the hip area.  When I asked her why she said because there is less fat there, more fat up on my hip.  Thanks.  That was it.  She bandaged me up and told me not to get it wet for 3 days.  It was 100 degrees that day and I needed a shower.  So we did alot of taping so I could take cool showers.  End of story.  It has been WAY too long since I blogged.  My next post with be shorter and sweeter :)  I miss the blogoshpere, I’m back baby!!!  I just have to stay out of the depression rut that comes with being in pain for too long of stretches.  Man, it’s a killer.  I’m trying to stay happy even if I have to fake it.  If you walk around smiling, it really does help, even if you look like an idiot, it wards of the blues.  Usually.  Sometimes.  Well, it worked today anyways.  I need to thesaurus the word anyways, I use it too much.  Regardless, I will use that word more often.  BTW, anyways wasn’t in there.  It’s anyway.  sigh.

It’s good to be back, until next time, with no whine!

Sunrise? Sunset…

OK.  Last night we had the most magnificent lightning storm that I have ever seen.  We sat outside and watched the sky light up to the left, right, in front of, and behind our house.  It was so crazy, we were in the very middle of the storm.  Of course I was freaking out asking the Big C what the chances were that we would get hit standing out in the backyard going ooooh and aaahhhh.  He’s from back east so that automatically qualifies him as an expert on the subject.  He was counting the seconds between thunder claps and telling me how many miles away it was and doing math while I worried about our computers, the fans that were on around the baby and was it true that you couldn’t talk on the phone, and did that guy that worked at the fast food restaurant really get hit in the headset by lighting while he was passing an order out the window to a car in the drive-through lane.  I was too scared to turn on the computer and look it up on snopes.

Well, the past few mornings I have been up at the crack of dawn, literally, and the sunrises have been magnificent.  So last night I decided to dig out my tri-pod that I found on sale for $14.99 (cheap!!!) and set it up to get a shot of this morning’s sunrise.  I figured with the freakishly weird weather, it would be a really good shot.  I fiddled with all the knobs and levers and could not wait until the sun rose this morning.  I overslept the sunrise by like 15 MINUTES.  I have seen the sun rise just about every day this week and they have been absolutely beautiful from the vantage point of my backyard.  Picture perfect…  So, of course after charging up the batteries for my old Nikkon and figuring out my new tripod, I would sleep through it!  erggg…  The shot you see above is a sunset taken from my backyard a little while back.  It’s pretty too.

I’m going back to sleep.

Arte Y Pico

I want to thank Ms. Chronic Chick of Chronic Chick Talk for this really cool award, the Arte Y Pico award!  She has a really good blog for those of you who are living with Fibromyalgia and Lupus.  She can definitely relate to all of the trials and tribulations of living with chronic illness, and she has a great positive attitude that makes her blog a good read.  Plus, she’s cool and one of my bloggy friends.  Reason enough I say to stop by and say hi to her!

OK, let me see how this works, I’m gonna copy and paste the instructions (yes, lazy I know)


1. Choose five blogs you consider deserving of this award. (Creativity, interesting material, etc.)

2. Each award includes the name of the owner of the blog and his/her link

3. Each award winner has to show the award and put the name and link to the blog that has given her or him the award itself

4. Award winner and the one who has given the prize have to show the link of “Arte y Pico” blog, so everyone will know the origin of this award

I’d like to pass this on to:

Sayangku Azura

The Oxygen Chronicles

Dancing With Butterflies

Type A With RA

Living With Chronic Fatigue Syndrome

There are so many great blogs out there, it was hard to choose.  I really wanted to give one to you Connie, but I see that mine was yours once removed, or something like that…

Thanks again Chick, I really do appreciate being honored :)

Good News from the Arthritis Foundation

I just got this email from the Arthritis Foundation and instead of me trying to explain it ( I have no brain today)  I’m just copying and pasting the e-mail.  By the way, I’m advocate…   :)

Arthritis Legislation Update
Dear Advocate,

As we near our nation’s birthday we wanted to share some preliminary good news regarding your advocacy efforts. Last week, the Senate Appropriations Committee recommended that the National Institutes of Health receive a 3.5% increase overall. Although the Arthritis Foundation and many other organizations were requesting a 6.5% increase for NIH, the 3.5% increase represents the first time in six years that funding for NIH research has kept pace with biomedical inflation. The National Institute of Arthritis and Musculoskeletal and Skin Diseases received a 2.9% increase with a recommendation for $523 million in Fiscal Year 2009. Due to Arthritis Foundation advocacy, the Committee specifically recommended the following in its approved bill:

“Arthritis – the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner, especially in the case of childhood arthritis. The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis.”

This Committee Report language was first shared with our advocates and Congress during the Advocacy Summit in Washington DC. This language is extremely important and indicates to NIAMS that Congress considers juvenile arthritis a priority and one that deserves more attention.

The Senate Appropriations Committee also recommended a 1.2% increase for the Centers for Disease Control and Prevention, raising their budget from $6.4 billion to $6.5 billion (a $76 million increase). Due to the advocacy efforts of the Arthritis Foundation, including the Chapters, our grassroots advocates and our Arthritis Ambassadors, the arthritis program at CDC received an increase of $500,000, which is nearly a 4% increase, for $13.5 million in Fiscal Year 2009. Once both the full House and Senate pass their committees’ versions, the differences between the two must be reconciled, passed again and then sent to the President for his signature. The appropriations process is far from over, and we will be reaching out to you in the coming months to continue your advocacy work to let Congress know more needs to be done for people with arthritis. Thanks to all of you for continued advocacy efforts to increase federal attention and resources for both adults and children at the NIH, CDC and in states throughout the nation.

Have a happy and safe July 4th!

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 discourages 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