Disappointing, actually

I had an appointment with my rheumatologist – or rather, his PA – this morning.  I got there a bit early because I couldn’t remember if the appointment was at 10:15 or 10:30, so I wasn’t really bothered sitting  more than half hour in the waiting room.  It’s quite nice, actually, very soothing music, nice view, beautiful furniture (it won a design award).  That part was good.

Then I got called back.  The usual nurse wasn’t there, but this one listened okay. She didn’t weigh me, but she did take my temperature (I felt warm, but no temp).  She wanted to know if I’d been charting my temperature and I said “Should I be?” and she nodded.  It was when she offered to get me a drink while I waited that I knew I was in for trouble.  A drink?  In the doctor’s office?  Okay, then.

About 45 minutes later the PA came in and apologized for the long wait.  He was very flustered and seemed at a loss as to what to do with me.  The nurse I spoke to last week on the phone said that I should always come in & see them if I have an infection, but at no time did the PA try to look in my nose (I have a sinus infection in my nasal sinus cavity) or anything useful.  He offered me a steroid injection and told me not to take any RA meds until the infection goes away.  He seemed confused as to why I was telling him about my infection at all, really. *sigh*

So I moved on and told him about my ongoing hip pain.  I’ve already reached my max # of shots for this time period, but he said I could get a shot lower down in my hip (think right under your butt).  I said no, as they really do hurt and I had to drive myself home.  He thinks I have inflamed bursa, but he’s not sure.  Next, I showed him my swollen, red hands & wrists and he asked if I had any swelling. “Umm…yes…this is swelling.  Here, try to bend my thumb.  Go on.”  So he prescribed me steroids to take in the meantime (to fix the whole system since it’s more than just hips) since I can’t take anything else…except Tylenol.  “Have you tried Tylenol?  Some people say it helps.”  Tylenol.  Really?  My paperwork says not to take Tylenol + Celebrex at the same time. “No, it should be okay, just be sure to eat something.”  He’ll schedule me for some physical therapy for my hips, but everything else needs to just go on hold until my sinus infection is gone.

So on we moved for bloodwork.  The usual phlebotemist was not there and the new one (I’m assuming she’s new and not just temporary, as the old one had pictures up and they weren’t there) was awful.  Yes, she had all her safety precautions in place and a name tag and all that, but she didn’t warn me when the needle was going in, regardless of me stating that I am needle-phobic & would like that, and it really hurt when it did go in.  The old phlebotomist had a knack for getting it in without me even noticing it.

After that I stood waiting in the hallway for my x-ray, as the x-ray waiting area chairs were being used by some people waiting for their doctor to come back & talk to them, which was fine I guess, but the nurse didn’t see me standing there (or at least I hope she didn’t) and instead took a 15 minute phone call which included not only discussion about fax machines and procedures, but lunch plans and gossip.  Eventually, after the other people left, I was able to sit down, and that’s when she called me in.  The x-ray went smoothly and I got to see it on the screen before the PA came in to see it; I love seeing x-rays.  So very cool.  The PA said it looked fine to him (“normal wear & tear & spacing for someone with RA”), but that he’d send it on to radiology “just in case” and that they’d call me if anything looked wrong, but wouldn’t call if it was normal.

I didn’t get to ask about this increasingly debilitating brain fog I’ve been going through or discuss Cymbalta vs. Lyrica vs. Effexor like he said we would last time.  I haven’t seen the real doctor in about 9 months, just the PA.  Next appointment is three months out.  It was just not a good morning.

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A Blog Award!

The Fabulous Sugar Doll Blogger Award in scrolly blue, white, & fuschia text on a baby pink background

This morning Remicade Dream bestowed “The Fabulous Sugar Doll Blogger Award” on me.  I live in the south, so I’ve been called “Sugar Doll” before, but I’ve never won a blog award before, so this is very exciting to me!  🙂

According to the rules of this award, I’m supposed to tell you ten unusual things about me that you don’t know, and then nominate five blogs for the award.  I’m not sure that there’s anything left that the internet doesn’t already know about me, but I’ll give it a try!

Ten “unusual” things about me:

1. As a small child, I thought that I could communicate with my dad through a crystal (which really was a broken off bit of reflective material from a bicycle) while he was away on a trip.  I’m pretty sure that my mom told me I could.  I remember telling that crystal everything while he was gone on his various trips after that.

2.  My dad is a math professor, famous in his particular field, so we spent a lot of time traveling here, there, everywhere for conferences.  I got to take a whole month off in 3rd grade to go live in Europe, thereby missing my first piano recital.  It was awesome.

3. I spent most of my childhood with lots of brilliant foreigners around, nearly all of whom treated me like I was just a short adult.  I mostly hung back and watched & listened, but it was so very nice being a mascot to genius’.

4. In addition to wanting to be a writer, I wanted to be a classical musician, composer, and artist.  I’m still pretty good at music, but I have no artistic (drawing, painting) skill whatsoever.

5. However, I love to spray paint things, so for my birthday I got three things cheap at yard sales that I can spray paint whatever colors I want.  I am so excited!!

6.  There is no #6.  That’s an old joke from my sci-fi/fantasy/horror group that I was in at college.  I met my husband there, working on the largest student run sci-fi convention in the US (Aggiecon).

7.  I still occasionally go to cons, but not as often as I’d like, due to children & illness.  If I could, I’d go far more often.  Fortunately, my kids are turning out to be just as geeky as are, so I see more cons in my future.

8. One of my favorite possessions: I have an autographed copy of “Children of God” b Mary Doria Russell that is enscribed “For Lisa – Thanks for sharing your drugs! Mary D. Russell.”  For the sake of posterity: she had a bad migraine coming on during a signing and was going to have cancel her reading (which was scheduled for several hours later).  I gave her one of my triptans (I had spectacular insurance at the time & could pop them like candy – ah, the good ol’ days) and saved the day.

9.  I love trees.  Live ones, dead ones, flowered ones, ones with spectacular fall foliage, ones that only have a few sprigs of baby leaves opening.  All of them.  Especially the weird ones.

10. Some of these aren’t ‘new.’ Having blogged/journaled/hosted a newsgroup/whatever for many, many years, coming up with 10 ‘new’ things about me was far too hard to do.  I have apparently spent too much time babbling on the internet.  But enough about me…

**************************************************************************************************************************

And now, the next Fabulous Sugar Doll Blogger Award goes to….. (drum roll, please)…..

1. She started out just the mom of some kid my kid went to pre-k with and now she’s my friend.  🙂

Embracing & Being Embraced by Shanda

2. Another one of those women that God reallyreally wants me to know & grow with:

The Boerger Memoirs by Marissa

3. I don’t even remember how I found her blog (or maybe she found mine?), but we’ve been following each other through the years, over here, over there, wherever our blogs go.  One day I’m going to drive across the state line and go meet her for real, but I already feel like I know her.

Stitch with me by Margaret

4. Everyone I know seems to know her (& love her) and has sent her link my way.  I’ve never met her, but reading her blog is quite often like reading a reflection of my heart

Mamastephf by Stephanie

5. I just really like this informative little blog about a lively college student with RA…

My Bum Thumb by Cari

The Fabulous Sugar Doll Blogger Award

Confessions of a Birthday Girl

I have some confessions to make, as it is my birthday and I get to say or do anything I want today and no one can stop me!  Bwahahah.

1. Apparently, although no one told me, I was supposed to stop taking my RA meds while taking antibiotics, so the last 3 or 4 sinus infections I’ve had were actually just one big long one that never ended.  Which makes so much sense.

2.  Another thing no one told me until this week, apparently once you get RA your PCP is no longer really your PCP, your rheumatologist is.  Did you know that?  I did not.  The nurse at my rheumy’s office told me that on Monday, after telling me #1 as well.

3.  Did you know that I’m ill?  Ok, ok.  I know I have RA, several kinds of migraines, either dysthymia or cyclothymia (depends on which doctor you ask), and allergies, but I’ve never really considered myself “ill” or “sick.”  Is that weird?  The people at my doctor’s office think so.  “Sick people like you do not need to be at the gym.  You need to rest this week until your next appointment.”  REST.  Hmm.

4.  I do not like to rest.  I think it sounds like a nice plan on a busy day, but once I do clear my schedule and get down to the actual bit where I’m sitting on the couch or the bed, I think “What next?” and then start fidgeting and thinking of things I need to urgently do somewhere in the next room, maybe, or out in the yard.

5.  I have four kinds of cake in my kitchen.  Or did have earlier today.  We may be down to three now.  1. half a homemade chocolate with chocolate frosting.  2. half a homemade chocolate cake with coconut pecan frosting. (I made those two.  one half for eldest son’s birthday, the other for mine) 3. Store bought chocolate mini-cake.  4.  Various kinds of super delicious, made just for me by a friend that loves me Cake Balls.

We also have mini cinnamon rolls and various kinds of mini muffins and three kinds of ice cream (all of which are leftovers from other things, but still, they are there).

6. There is no number 6.

7. I may have eaten some of all of that because it’s my birthday.  Well, the cakes anyway.  Not the ice cream.  I discovered this year that I don’t really like ice cream.  All that coldness in one place must surely be bad for you (it couldn’t possibly be all that cream and sugar that’s bad).

8.  I really miss going to the gym.  Never thought I would ever say that, but there it is.  I miss the gym.  I like doing the elliptical the best, but the weight machines are nice, too.  I like the after pain of working out because it is so different from the regular joint pain.  That’s probably weird too, but I think that all this chronic pain makes you just a little bit crazy.

9. I love birthdays.  Our family has three this week and most of my friends from college have birthdays this week as well.  It’s fun seeing what everyone’s up to, even as far flung as we all are.  Nice to know everyone else is eating too much cake, as well.

10.  Tomorrow I will try very hard not to have cake for breakfast.  I might have a banana nut muffin though.  The person that made them said that they are made without butter or oil and have flax seed in them.  That sounds healthy, right?  I could have a few of those.  They are teeny-tiny.

Hope everyone else had a fabulous day!  🙂

Finnegan, Begin Again

Nobody can go back and start a new beginning, but anyone can start today and make a new ending.
–Maria Robinson

I get up every morning and read all the RA blogs. Okay, not all of them, but quite a lot of them. Every day someone out there surprises me with something I didn’t know about this disease or the drugs that I’m taking or just an outlook about something that I’d never have thought of myself. So thank you, people. I love “spending time with you” even though we don’t know each other in real life.

This morning a couple of my favorite bloggers wrote about their struggles with diet and exercise. I have to admit here, now, that I haven’t been to the gym in a week or so. I spent all last week with yet another sinus infection and I felt sorry for myself, so I stayed home and ate Easter candy. My face still hurts this morning and there’s been a big weather change so it’s cool & it’s rainy & I’m achy all over, so I had a nice day all planned of staying in bed & folding laundry while watching movies.

Not now. I made myself a healthy breakfast (a half-whole-wheat blueberry pancake topped with local wildflower honey, a slice of turkey bacon, and a couple mugs of organic chai tea sweetened with organic stevia – I’m not a big breakfast eater). For lunch, instead of reheated pizza, I’ll make some chicken salad (rotisserie chicken, no skin, with apples, celery, almonds, & just a bit of light mayo & plain yogurt to stick it together). For after school snack, instead of doritos (not mine, my mom sent them home with the kids, actually), we’ll have blackberries & milk. For dinner, well, we’ll have what’s already on the menu: grilled salmon with broccoli & cous-cous.

Now I’ll go get started getting ready to head to the gym. I may not do a full workout, but I’m going to get started and see how it goes from there. Thanks for the inspiration Warm Socks & Wren! 🙂

Ah-ha!

Remember the post where I talked about how I wanted to change my laundry life? Well, I have found the blog with the fabulous laundry room closet: The Idea Room. Here’s a link to the laundry page. 🙂 YAY!

This is what I have to look forward to?

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.”

— Helen Keller

Most of my friends lists have been up in arms about this journal entry, written by a 29-year-old disabled woman, about her difficulties with a particular airline.  (Go on, read it.  I’ll wait here.)

I’m just appalled at this.  Not just the fact that the airport failed, or that the stewardess failed, or the supervisor was rude & unsympathetic, but that all those people failed, too.  Except for that one nice man, people rushed past her and didn’t offer help or a kind word.  They made faces and bumped into her and treated her, not like a person, but like an object that had to be gone around.

What is wrong with these people?

I’m not disabled yet.  I hide my illness well.  I have a fabulous husband that helps me with, well, just about everything.  But what if I were to have to travel alone in the future?  I hear stories like this all around me and I get scared.


Worry

I’ve been trying to formulate a coherent post these last few days, but I’m having trouble coming up with phrases that make sense.  I’m having that giant fog that comes on sometimes with RA or the RA drugs or whatever it is that causes it.  The fog that takes coherent words & phrases out of my head and replaces it all with nonsense & hand gestures.  I can’t get certain words out of my head (“donkey” is today’s word) and I can’t tell my kids to do stuff without pointing and yelling because I can’t even make sense to myself, let alone them (“GO!  Do that thing!” Rolling hands around in a circle  “You know what I mean!  Left Thigh!  No!” Pointing  “I meant the bottom right cabinet!  You KNOW!” Thumbs up  “GO!”)

I’ve been on Simponi for four months.  I’m on to my third sinus infection in three months.    I’m having mini-flares that only last a day or two, then go away for a day or two, then come back again, etc.  They aren’t full on flares, but will involve just a few joints that majorly hurt (the kind where you cry when you move) instead of all my joints hurting all at once kind of moderately (the kind where an ice pack or heating pad & an action movie can take your mind off it for a while & you can stumble along through the day with help).

I was having good day yesterday (nothing but aches & no swelling), so I tried out my new gyms yoga class, which I’d been told held people of all levels, but could be modified for me.  I’ve never been in a real class before.  I’ve done it all to a video at home, with modified poses and breaks when I’m tired.  The instructor tried to modify for me, but the fact was that this class goes way past beginner and she couldn’t hold up class for me.  I tried her modifications, but I’m not flexible enough even for those.  Plus, I’m at least four dress sizes bigger than the biggest lady there.  I’m not huge, but they were all teeny tiny and could fold in half with ease.  I do not bend that way.  So that was a big downer.

Sorry I don’t have anything good to say today.  I just had to post, though, or I wouldn’t get on with things.