Being a Vampire’s GF Ain’t Cheap

You’d think for as much as much blood as I’ve been donating the past couple months, I would start to get some nice dinners, handbags, flowers.  Being a vampire’s girlfriend is so glamorous in the movies.  Sheesh!  All I get is anemia and a bundle of envelopes asking for money?  I swear…

Anyhoot – I’ve been such a blog fail the past few weeks!  Too much going on at once – ramped up marketing campaigns at work, housing madness, shuffling in and out of UT Southwestern’s facilities, etc. etc. etc.  I started this blog as a place to journal about my lifestyle changes, and it’s been cathartic for me to vent about the bad things or share excitement over new quilts, recipes or things I’ve tried.

Most of you following along have seen my frequent flyer status at UT Southwestern.  I’ve been through a zillion labs, two specialists (with one to come) and taken all kinds of tests.  The good news is that the Big Bads were all ruled out – no cancer, no lupus.  The bad news is that my stomach is still a cranky asshole (for no good reason) and my platelet count continues to drop.  And drop.  And drop.  There’s no treatment until I hit a critical place, so the best thing I can do in the meantime is continue my weight loss, take good care of myself, and check back every six weeks for more testing.

At the rate my platelets are dropping, I’ll hit the critical place this year, so I need to be as healthy as I can when I start getting force fed steroids and God knows what else to get my blood in line.  And that’s without knowing what the rheumatologist has in store.

The scary thing is paying for all of this mess.  Well, scary and annoying.  I’ve been squirreling away cash for a new house, so being hit with $2k of lab and hospital bills really stinks.  Sure, I’m happy to have insurance, but let’s be honest – insurance sucks.  Health care is just really expensive no matter which way you cut it.  I dropped down to a lower plan this year because I NEVER go to the doctor, but also because I know I have the financial security to pay up to my deductible.  And lucky me…I already hit the deductible this year.  I’m still a ways from out my out of pocket max, but at least Aetna will pick up 80% of the tab for the next few months before finally committing me to me and going for 100%.  Sheesh.  Worst date ever.

Oh well, such is life my friends.  I’m thankful to be relatively healthy and thankful I can pay for my care.  I know many people aren’t as fortunate as I am!  I was also fortunate to have my momma with me during most of these tests, and she’s been a great sounding board for my freak outs.  Because heaven knows I’ve had them.

More good news – the inspection round for my accepted home offer went well, and I’m just waiting to close!  May 20th is the big day, which also happens to be my Pop’s 65th birthday 🙂  Fingers crossed that the house appraises…one less thing for me to worry about.

  • Health – managed
  • House – in process
  • Quilts – still a go
  • Dating – meh.  Maybe once H & H are done.

Cheers!

Answers…Maybe I’ll Get Some!

Okay friends – big week ahead.  Hopefully I will FINALLY get some answers!  If you need me, you can find me at UT Southwestern donating all of my blood.

To recap:  a few weeks back, I had extensive blood tests done and came back with a trifecta of doom.  Highest inflammation levels ever (despite my extensive lifestyle changes), lowest platelet count ever and a positive test for ANA.  The last one, at least, means that my body is attacking itself.  That can lead to all kinds of sucky autoimmune diseases like lupus or polymyositis.

I’ve been trying not to worry until I had something concrete to worry about, but while my head has remained relatively cool, my body has been unimpressed.  My anxiety has been sky high, making my stomach a train wreck (not helping my unrelated vomiting problem, sorry for the TMI) and I’ve had a bit of bitchery too.  Sorry, friends and family.  While it’s better that I couldn’t drink myself silly on Collin’s sangria at Joey’s 40th birthday, I certainly would have been more fun with a couple of glasses 🙂  (Great catching up with everyone, though!!  Love you guys!)

Plus, I got to jump into a pool on Saturday!  YES!  At an awesome new friend’s house to boot.  Maybe that extra boost of vitamin D can help kick all the nasties away.

As usual, I digress.  Back to blood – that’s my Tuesday trip to UTSW.  I’ll meet my hematologist and probably get sent for more tests.  I’m truthfully hoping for some answers, though, because I want to find out why everything in my blood is so jacked up.  We thought food allergies/intolerances were causing the inflammatory reactions, and they may well be, but it could be other stuff too.  I have no illusions that gluten will be a regular player in my life ever again, but I’m still irritated that cutting it out of my diet didn’t fix everything.  And it’s a catch 22, because both my regular doctor and gastroenterologist want to retest me for Celiac, which means I need to put guten back into my system, which means I’m going to want to die.  That’s going to feel wretched after so long without.

Part two comes on Thursday as a follow up to my gastroenterologist appointment.  First up, an ultrasound for my buddha belly!  Then I get to eat some radioactive scrambled eggs and have my stomach activity studied.  The working theory is that it isn’t processing food properly and somehow that’s triggering me to throw up all the time.  I’ve said a million times that I’m only overweight because my body hangs on to dinner and processes calories twice.  Maybe I’m on to something!

Or maybe I should just come to terms with my fashion degree, even though it’s a Bachelor of Science, and admit I know nothing medical.  I only enjoyed science class when it was earth science and geology because I could daydream those rocks would turn into gemstones which would turn into jewelry.

So that’s where we are.  Mom drove down from Missouri today so she can go with me.  I’m in excellent hands, because ain’t nobody better than my momma.  Work knows I’ll be out for two days this week and I’m full of well wishes.  Part of me thinks I’m over-reacting, but the rest of me is beating myself up for not doing something about all of this earlier.  I’ve known about my elevated inflammation levels for two years now but whine whine whine it’s too haaaaaaard.  Bah.  The low platelet count is relatively new, though, and the ANA as well, so I’ll try not to be too hard on myself.

All I want is to feel good and to be healthy.  Seems like it isn’t too much to ask 🙂

I’m sure I’ll blog all week about my experiences.  It definitely makes me feel better to share.  Trouble shared is trouble halved, right?

Reality Checks

Ah, weekends. I had a great one, even with big old reality checks, level sets, priority checks and a boatload of sleet. Dallas, stop it. I’m being serious.

Remember when the fat envelope was a good thing? I was finally willing to walk down to the  freezing cold mail room to catch a few days of pile-up, and I had two big old envelopes from UT Southwestern. I assume kids today get an email or tweet or some other digital bullshit when they’re accepted to college, but we always looked for the fat envelopes. Skinny was a wait list or rejection for sure.

Well, these fat envelopes aren’t cool. Here’s my first reality check – the hematologist is at the oncology clinic.  Harold C. Simmons Cancer Clinic, to be exact. God that header is big.  HUGE!   I know cancer is a slim possibility with all this mess I have going on, but it’s still there. It’s almost like this letter is telling me, “Hey girl.  You probably do have Lupus. But at least it’s not cancer! Buck up, buttercup.”

And let’s be honest – we’re all hoping I’m in the 15% that have bad labs but nothing is wrong. Not having any reason my numbers are off is scary in its own way, because then there’s no treatment and all of the risk is still there, but I’ll deal with that when I have to deal with it. Inflammation is not a nice thing to have in your body, but again, it’s not cancer.  Even just thinking the word reminds me of the person I was once close to that died a couple years ago, and my heart just skips a beat.

I’m pretty good at shoving emotions aside and just using my head and logic to work things out, but I slip sometimes. I’ve joked that I’m emotionally dead inside, and honestly, sometimes it’s the best way to deal. If it isn’t going to hurt anyone else, fake it ’til you make it.  I enjoy a winning strategy.  So I’ll whine and freak out on my little online journal, and maybe some more to my mom, and otherwise I’m going to pretend it’s not happening until I have to. Most of the time I’m totally fine.

Happy, even.  There’s so much good stuff in my life right now, and I just need to count my blessings.

The second envelope is for the “Digestive and Liver Diseases Clinic.” You’d think my liver would be the issue if you’ve spent any bar time with me (just kidding mom! I say these things for humor!) but my liver is a-okay 🙂 I’m not even sweating this one anymore, even if shoving a tube down my throat to see why I throw up so much will probably just make me throw up.  Good grief. Sorry for the overshare, but it really is ridiculous. I’ve been good the past couple weeks, but I’ve been soooo careful and haven’t had much of an appetite anyway. Guess it helps.

Speaking of no appetite, though, I’ve been taking little chances here and there with my diet while I’ve been out and about this weekend. I know my blood reacts to gluten, dairy, soy, etc., which is why I stopped eating it. But I had some cheese and a couple bites of pita Friday  night, and the world didn’t end. I had some naan with my chicken tikka tandoori and masala sauce last night, and the world didn’t end. It did knock me the hell out though, holy smokes.  I slept for over ten hours last night!

I haven’t been sleeping well from all this stress, I guess, but that did the trick. Too bad I can’t take bread instead of a Tylenol PM. Reality check number two – bread isn’t worth the belly bloat and skin breakouts. I could feel my cheeks start to flush. Definitely not something I’m going to make a habit of, so don’t worry Mom!  I’ll get back to always carrying beef jerky and almonds if I get stuck somewhere without food I can eat. Fortunately I can eat the masala sauce without naan next time I’m craving Indian 🙂

Reality check three – I can eat my average of 1600-1800 calories a day, but throwing bread in the mix will put a pound of fat back on my ass. I actually only averaged 1400 calories the last couple days, and I still feel like I’ll have gained five pounds when I weigh myself in the morning. And I know I should have eaten more, especially since I worked out, but when you’re not hungry you’re not hungry.  And having six hour quilt classes really keeps you distracted 🙂

So this is me, casually freaking out. I quilt, I have cider, I break all the rules for a couple pieces of cheese and some naan.

Did I mention this was a great weekend? So fun going out Friday night, sleeping in, taking my quilt class, catching up with an old friend over takeout and a mani pedi today. The only thing that would have made it better would have been some sun. Please come back, sun. I miss you.

Here’s the quilt top from Saturday’s class – super cute “Playful” layer cake by Cotton + Steel in a disappearing four patch quilt class taught by one of the gals in my paper piecing class. I was so excited, and this will be a great piece for me to learn how to quilt on a bigger piece! More classes to take 🙂

Laying out the nine blocks so I can evenly distribute the prints.

Finished product!

And I’m Instagram famous! Wish I had put some lips on 🙂

Cheer!

When It Rains, It Pours…the Results are In.

Seriously, Dallas.  Cut it out.  I think my friend Jamie put it together best – “Only in Texas can it rain, sleet, snow, and the sun shine all within 10 hours.”  The city was shut down for two days, snowed more this morning, and by the time I left the office I was practically sweating in the 55 degree sunshine.

I wish the insane weather was my only complaint, though.  Unfortunately, the pouring rain I’m talking about comes in the form of the rest of my test results – they came in yesterday morning, and I’ve given myself a day and a half to let it all sink in.  My ana (autoimmune screening) came back positive, so now my just in case trip to the hematologist for low platelet count has become a you are definitely going to a hematologist and likely following it up with trip to a rheumatologist too.  What???

What does this even mean?  Well, here’s what my doc had to say courtesy of the rheumatologic association:  “The immune system makes an abundance of proteins called antibodies. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake, identifying normal, naturally-occurring proteins in our bodies as being “foreign” and dangerous. The antibodies that target “normal” proteins within the nucleus of a cell are called antinuclear antibodies (ANA). ANAs could signal the body to begin attacking itself which can lead to autoimmune diseases, including lupus, scleroderma, Sjögren’s syndrome, polymyositis/ dermatomyositis, mixed connective tissue disease, drug-induced lupus, and autoimmune hepatitis.”  Cancer gets thrown into the mix too, but I think that’s a very, very low possibility.

I know that’s a lot of big words in there, but I’m thinking best case scenario, my low platelet count, insanely high inflammatory levels and positive ana all likely have something to do with each other, and at least a hematologist and/or rheumatologist will help me sort it out.  And there’s a 15% chance it’s not a damn thing at all, just my body being an asshole for asshole’s sake.  Wouldn’t surprise me.

I spent the weekend being annoyed that finally taking doctors and allergies seriously didn’t have the healing powers I thought they would, and now this is dumped on me too.  I’m fine, honestly, because there’s nothing to worry about until there’s something to worry about, but it’s unsettling.  And to make it worse, I can’t get into a hematologist until March 31st, which means I get to spend a whole month feeling unsettled and jittery.  And that, my friends, sucks.  I don’t do this unsettled thing gracefully.

On the bright side, surely if it was critical I wouldn’t have to wait that long for an appointment.

As I told my parents tonight, it’s not like I’m going to all of a sudden order a pizza with extra cheese and a beer, because going BACK to gluten, dairy, soy, etc. would just make everything worse.  And the gastroenterologist I get to see mid-March for completely different issues would likely agree.  A GI scope, SO FUN!  I’ve been burning off nervous energy at the gym this week too…thank goodness there’s one in my building since the streets were iced over.  I’m just feeling jittery and awkward and blah.  I haven’t had an appetite all week either so maybe I’ll at least get to drop a few more pounds. (Bright side, I’m looking for you.  Hard.)

I started a new quilting project to take my mind of things, and WOO I haven’t had to redo this many stitches since I first started sewing.  My focus is more than a little off, so I’ve had to rip out a lot of seams.  The worst part is that I’m doing paper piecing, which means the stitches are tiny tiny tiny.  Ugh.  That’s the biggest reason it’s taken me two whole evenings to do just one block.  It’s a great block, though, and I absolutely adore these fabrics.

Here’s what it looks like to rip out stitches out of a small block, followed by what it looks like to rip out stitches out of an almost completed block.  Whoops.

IMG_1465_2IMG_1466

Maybe by the time this sucker gets done, I’ll have a guest bedroom to feature it!  It won’t be at the cow house, since that’s long gone, but I’m sure something else with three bedrooms and a pool will head my way in the next couple months.

I think that wraps things up for me now.  My body hates me and is attacking itself, no cow house, work is absolutely bananas and Dallas weather is insane.  Goodness.  And I’ve got the attention span of a gnat right now to boot, which doesn’t help any of the above.  Ack.

Hopefully I’ll have a better attitude in the morning, or at least by the weekend 🙂

Cheers,

C