I’ll let it pass and hold my tongue

I almost included this in my last post. I had the majority of it written, then paranoia and self-doubt came over me and I ended up cutting it out. I saved it, though, in case I changed my mind. Well, I am changing my mind now. More like forcing myself to change my mind, but either way, the end result is the same.

As I stated before, I wasn’t very happy with the first rheumatologist I saw. She was confusing me and my mom, and that lead to me not having much confidence in her diagnosis. I had been debating getting a second opinion, but hadn’t quite made up my mind yet.

Continue reading “I’ll let it pass and hold my tongue”

I’ve been better than this before, I know you’ve seen me be

I’m almost amused with the myriad of different ways I can find to instantly distract myself whenever I come to make a post here. “Oh look! These plugins need updates! Must fix now!” “That’s done, now time to write, wait.. who’s singing the song on my iTunes. Let me check that out. *pause* Oh yeah… I forgot about her/him/them. Let me go see if they’ve got any more stuff on iTunes I can buy/add to wish list for later.” And then I end up in a YouTube spiral, hunting out more music. Or I end up on Facebook or Twitter and completely forget I ever opened a tab to start writing. Sometimes, like just now, I get a phone call as I’m writing, asking what it was I needed to buy at Petco, so I end up spending way too much on their website, trying to remember what it was that I wanted to buy for Bennett, my hedgehog. Yup, I am most definitely a master of procrastination and distraction.

Life has been quite an adventure the past few months. I’m tired of always being tired and sore and in pain, so I started seeing a rheumatologist last year. The first visit went well, and blood work turned up a few interesting possibilities. I had a positive ANA test (1:160), which can suggest lupus amongst other diseases. The doctor shortly ruled lupus out, however this was at the same time she began confusing me with my mother; who was also a patient of hers. With her confusing the two of us, ma’s hand wasn’t properly diagnosed, and I was no longer confident in her stating that there was no chance it was lupus for me. I wanted the result to be “nope, not lupus”, but I also wanted to know for sure it really wasn’t, and that she wasn’t using mom’s history/blood work to come up with that diagnosis.

After getting a copy of my medical records from that first doctor, I sought out another rheumatologist, and had my first appointment with her at the beginning of the year. I instantly liked this new doctor, and felt more secure when she said “I’m positive it’s not lupus” after reviewing my files. She also ran a bunch of blood work, more than I’ve ever had done at once. I’ve joked that it was almost enough blood to be a donation, instead of a draw for blood work. That blood work turned up a bunch of interesting positives, several of which require further testing to know if they’re true positives or false positives. She also ran another ANA with this blood work, and this time it came back negative.

I’ve already seen one specialist so far, and he has me scheduled for a biopsy via upper endoscopy to confirm/deny celiac disease. From reviewing the blood work that the rheum sent over, he’s thinking it’s a false positive, but the only way to know for sure is the biopsy. I’ve also got an appointment with an endocrinologist coming up to see if I have thyroid problems, since my TSH came back abnormal. About 20 years ago, I had a doctor tell me she was convinced I had a thyroid problem, but all my tests have always come back in normal ranges. She had mentioned, back then, that it can some times take a while to actually show up in the blood tests. I don’t think she figured it would take 20+ years, though. 😉

In that initial blood work with the new rheum, there were also some issues with a few areas in my CBCs running high, and so she kept having me come back to get those rechecked. One of the repeated tests consistently ran quite high and that, combined with the positive Lyme disease test in my original work-up, made her decide to send me to an infectious diseases oncologist; once again to confirm/deny if it was a true positive.

I really do like this new rheumatologist. She is every bit as dedicated to finding out what exactly is going on with my body as I am. A few times, she’s commented to me that “A person of your age shouldn’t be in this much pain. We need to know what’s causing this.” It’s so nice to be taken seriously by someone, when you’ve got an “invisible condition.” A diagnosis is exactly what I want, probably more than anything. I know that a diagnosis is not a solution. But, to me, a diagnosis is hope. Then I’ll have a name for what I’m fighting. An identified foe, instead of a nameless malady. Sure, there’s always a chance that the cause of my head-to-toe pain isn’t curable. But knowing what it is provides proper treatment. It gives us something specific to target when trying remedies and ways to lessen the pain so I can attempt to lead a more “normal” life again.

I miss who I was before pain was a constant companion in my life, with its presence always increasing. I want to shove it back into the background again. I want to be me.

But seas between us broad have roared since auld lang syne

1. What did you do in 2012 that you’d never done before?
Have 3 MRI’s in one year. Ha. Had laser hair removal. Spray painted the cars at Cadillac Ranch. Went to Stonehenge — the one in Odessa, Tx. Had my name in a best selling book! Started going to a rheumatologist. Held a baby kangaroo.

2. Did you keep your New Years’ Resolutions, and will you make more for next year?
Nope… don’t make any.

3. Did anyone close to you give birth?
Nope, but a friend is going to next year! 😀

4. Did anyone close to you die?
I lost a cousin this year.

5. What countries did you visit?
None. Sob. No trips to Canada this year. 🙁 I hate being broke.

6. What would you like to have in 2013 that you lacked in 2012?
It didn’t work last year, but I’m trying again: more money & less pain!

7. What date from 2013 will remain etched upon your memory, and why?
Feb 3 – Had a MRI/MRA (with contrast) on my brain — WITHOUT having a panic attack or having to be sedated. I had a wonderful tech who helped me through it.
March 14-15 – Road trip to Roswell, NM with Emily… stopping to spray paint the cars at Cadillac Ranch, hunting aliens.. TRAIN! RUMOUR HAS IT! Stonehenge in Odessa. MASSIVE car accident/shut down highway, trying to find a way around it to get home.
April 6 – 10 years since Dad passed away
July 24 – DIED! Except… only in literary form. Ha. (“Thirteen” was released this day, and a character with my name gets dismembered in the book.)
August 13 – Adopted Loki

8. What was your biggest achievement of the year?
Ma’s 60th birthday gift — collected memories of her from her friends & family, each one in a separate envelope and bundled in a box I hand-decorated.

9. What was your biggest failure?
I know I have some…. I’m just not sure what I’d put here.

10. Did you suffer illness or injury?
Of course. I wouldn’t be me if I didn’t. 😉 Let’s see…. there were the ‘normal’ knee issues, managed to mess up a nerve in my back that has my right leg numb-ish, slightly bulging disc in back, bronchitis, laryngitis… That’s all that’s coming to mind. 😉

11. What was the best thing you bought?
The new kitten, Loki. My silly insanely soft lil boy. Groupon for laser hair removal (always wanted to, but now I can finally afford it!). My new camera. Although – I don’t know if that counts. I bought it, but I bought it with Christmas money, so it was technically a gift…

12. Whose behavior merited celebration?
People who helped re-elect our awesome President.

13. Whose behavior made you appalled and depressed?
As per usual – names and deeds withheld to protect the innocent. (“The innocent” being me, since this is a public forum and all. 😉 )

14. Where did most of your money go?
Medical bills. Meh.

15. What did you get really, really, really excited about?
Trip to Vegas for mom’s 60th birthday. Road trip with Emily. Adopting Loki. Becoming a Whovian. Having my name in a book.

16. What song will always remind you of 2012?
Rumour Has It – Adele
Brokenhearted – Karmin
Call Me Maybe – Carly Rae Jepsen. 😉

17. Compared to this time last year, are you:
a) happier or sadder?
Slightly happier
b) thinner or fatter?
About the same
c) richer or poorer?
Poorer. Again. Too many medical bills/no raise

18. What do you wish you’d done more of?
Travel

19. What do you wish you’d done less of?
Incur medical expenses/go into debt. Meh.

20. How did you spend Christmas?
Went to IHOP with mom & the brother, then mom & I went to see “Les Misérables”. Was extremely happy when snow fell that afternoon and we ended up with a white Christmas. 😀 Watched the newest episode of “Doctor Who”.

21. Who did you spend the most time on the phone with?
Once again – Mom (talking). Emily (texting)

22. Did you fall in love in 2012?
Nope.

23. How many one-night stands?
None.

24. What was your favorite TV program?
Flashpoint. Grimm. Leverage. Doctor Who.

25. Do you hate anyone now that you didn’t hate this time last year?
I don’t think so. I know there’s a few I dislike now…. but not hate.

26. What was the best book you read?
“Thirteen” by Kelley Armstrong. (Check it out. My name is in it. Hee!! :D)

27. What was your greatest musical discovery?
Rediscovered a lot of older music, when scanning in old CDs before selling them

28. What did you want and get?
Loki-kitten! New camera.

29. What did you want and not get?
To travel to Canada

30. What was your favorite film of this year?
I actually went to the movies a lot this year! Well, a lot for me…
My favorites: Pitch Perfect, Avengers, Brave, Wreck It Ralph

31. What did you do on your birthday, and how old?
I worked. What fun. Turned 38. Got insanely beautiful rainbow roses from my best friend.

32. What would have made your year immeasurably more satisfying?
Having less pain & medical bills

33. How would you describe your personal fashion concept in 2012?
Same as always — “Whatever”

34. What kept you sane?
IM/text/email conversations w/my best friend, Emily.

35. Which celebrity/public figure did you fancy the most?
Hugh Dillon. Brendan Fletcher

36. What political issue stirred you the most?
The election. Marriage equality. Gun control.

37. Who did you miss?
Emily. Way too far away.

38. Who was the best new person you met?
I dunno.

39. Tell us a valuable life lesson you learned in 2012:
You may think that life’s got you beaten to a pulp, but it can find new ways to cause you pain.

40. Quote a song lyric that sums up your year:
“Underneath the clothes we’re wearing,
scars we all carry; some that don’t fade.
And they read just like a roadmap.
Time cuts a deep track through skin and vein.”

     Everybody Falls – Beth Thornley