Category Archives: Truthful Tuesday

Truthful Tuesday: The #ChronicLife Edition

Since yesterday morning I’ve been live tweeting my life with chronic illness with the #ChronicLife experiment started by The Hurt Blogger.

I’m not sure what I expected when I decided to join in, but I certainly didn’t anticipate the overwhelming support and camaraderie. As I tweeted through failed naps, pain, and my daily events yesterday, I gained new followers, favorites, and retweets in droves. As my phone kept chiming, I stared in wonder. I will forever be grateful for this experience.

So today I decided to open myself up to questions, both from my followers, and anyone who might be curious about life with a chronic illness. In that same thread, I’m sharing a few bare truths here, things about life as a spoonie that no one really talks about. I hope you’ll follow along here, as well as on Twitter, and if there’s anything I haven’t covered, please go ahead and ask!

*I can’t tell you how many times I’ve wished for the automatic dryer/clothes dresser-robot-machine-thing from The Jetsons. Can one of y’all get to making that a reality?

*Shaving my legs is a luxury. I’d like to be one of those girls who can keep up on her personal appearance, but by the time I wash my hair and body, I’m exhausted. So I maybe shave once a month. It just requires so much energy, and very concentrated movements of my hands, which are often just too shaky.

*I stopped wearing my hair long because I would get migraines from wearing it piled on my head in a messy bun, and actually styling it took too many spoons. The short bob I sport now also helps hide the fact that my once thick hair is now thinning at an alarming rate. I lose handfuls of hair each day, a common side effect of many RA medications.

*Sometimes I do things even if I know they’ll hurt. Because sometimes I just want to feel normal for a little bit. So I’ll eat those crackers, even though they’ll aggravate my jaw and I’ll be in pain most of the night afterwards. Or I’ll spend time playing on the floor with my doggy, even though I know it’s hard for me to get back up again, and sitting cross-legged is very painful after only a few moments.

*I haven’t been able to fasten my own bra in over two years. I’ve tried even on “good” days, but turning my wrist that way sends shooting pains through my fingers and hand. Not to mention that hooking the clasps requires steady hands that I just don’t have anymore. Most days I wear a sports bra, otherwise I have to have my fiance help me.

What parts of every day life are affected by your chronic illness? Do you have a question about my life? Ask away, and follow along on Twitter!

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Truthful Tuesday: I’m A Groupie

If you’ve been here longer than a minute, you know it’s no secret how much I love music.

For as long as I can remember, music has been the glue that holds me together, the muse which releases the words trapped in my mind, the outlet through which I can finally BREATHE.

So maybe then it’s not much of a surprise that I’m marrying a musician.

When I met the fantastic Mr. Scotty (which should be his new stage name, don’t you think?) he might have mentioned that he “kinda played guitar.” For the first six months, I never saw a hint of his guitars. I thought it was a hobby, and didn’t think much other than “that’s cool.” So when he told me he was trying out for a band, I was excited for him, but didn’t have any expectations.

Imagine my surprise when I saw his first show and he played Tom Petty’s Mary Jane’s Last Dance AND COMPLETELY KILLED IT.

I stood like a fool with my mouth gaping open. Was it truly possible that I was dating this amazing guitar player on stage?! OH MY GOSH I’M DATING A GUITAR PLAYER!

And that’s how I became a groupie. (No, not THAT kind of groupie. I’m only sleeping with the guitar player, thankyouverymuch.)

Scotty now plays with a different group, and it’s been a wonderful four years of watching him live his dream. The passion on his face as he loses himself in a song is nothing short of breathtaking. And though he’s humble and will brush it off if you tell him so, he truly is an amazingly gifted player.

Some girls might dream about dating a musician, and I was no different. To my credit, I can say I was head over heels in love well before I saw him play for the first time. But it sure is a nice perk to get to go out on the weekends and hear the crowds cheer his name and know he is all mine.

Truthful Tuesday: I’m Hurting

It’s been awhile since I’ve shared some truths. Today the emotions are still running high, so I thought this would be a good way to process some of them.

*The doctor says I have TMJ, that it is related to RA, and is likely caused by my poor stress management.

*While I’ve improved in some areas in therapy, stress management is still something with which I’m struggling.

*What I really want is someone to handle these things for me.

*I not only have a hard time telling people “No,” I also have an equally difficult time saying “I can’t do this any longer” when an obligation or responsibility becomes too much for me.

*Right now, the emotional pain of this diagnosis and the surrounding issues are as painful as the TMJ.

*The pain is impacting my ability to eat the food I want, and today it hurts to talk. Or sing.

*My doggy asking to play will never not bring a smile to my face, no matter how much I hurt.

*My doggy waits until I’m in the middle of a post, and knee deep in the writing mojo before he’s ready to play. And he will not take no for an answer.

*Even while things have been rough these few weeks, I’ve been blessed. I’m lucky to have friends who do so much to enrich my life.

*I will overcome this hurdle, just as I’ve overcome everything up to this point. I may need a few days to process things, but I will prevail. And I will smile again.

Truthful Tuesday: A New Path

I love and hate the Tuesday after a long weekend. On one hand, you’re already one day closer to Friday. On the other, you’re an extra day behind on emails and such. Here’s some other things about this Tuesday:

*I start Remicade infusions, a new (for me) treatment for Rheumatoid Arthritis, today. I’m both excited and terrified. I’m really hoping this is the right path for me, but I’m worried about side effects and that it won’t work. If it doesn’t work, we don’t know what the next step will be…

*My son starts 8th grade this week and I’m incredibly proud of him. However, I’m quite unsure where all the time has gone. How can he be nearly 14 already?!

*My house is alarmingly quiet and empty without my son’s excited energy here to fill it up. We miss him more than words.

*It is now under 11 months (and counting!) until our wedding. We’re trying to get serious about finding a venue and nailing down some other details, but also trying to remain calm and stress-free. It’s hard, yo,

*I’ve decided to link up with not one, but TWO photo challenges on Instagram this month. I’ve been bad about slacking on these in the past, so if you’re inclined to offer reminders, I’ll take them!

*I’ve really been craving Thai food lately. Clearly this means Scotty and I need to take a day trip to Portland to visit my loves and go to the food trucks.

*I’m incredibly grateful for Scotty, his boss, our circle of friends, and my doctors, who’ve all had a part in taking care of me and making my treatment both a priority, and a possibility.

Truthful Tuesday Ten

I’ve been wanting to hop on Rabia’s Tuesday Ten link up for awhile but I always forget until it’s too late or I don’t have anything that fits the topic. Until now.

In anticipation of my Ask Away Friday swap with a photographer this week (check back Friday!), I was inspired to join in and share ten photos with you today. And because I love Dawnie‘s Truthful Tuesdays, I’m combining the two.

So here are ten photos from my phone and the truths behind them.

family

1. This is my family. This is me, my son, and my future husband. These two people mean the absolute most to me in this world. And yes, the boy is just a smidge taller than my fiance. Don’t mention it though, it’s a sensitive topic :p

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2. This is the other member of our little family. This guy has melted my heart and filled a giant void I didn’t know was there. This photo was taken weekend before last while the boy and my fiance were playing wiffle ball in the park. Todd wanted to play, too!

photo (6)

3. These people are extended family and we miss them dearly. Kristen and Seth, Christmas before last. They came to celebrate with us and when they heard that we had lost Misty just the night before, they poured mimosas and helped me to toast my sweet friend.

photo (9)4. I love each of the ladies in this photo. And yes, that IS The Bloggess. She was in Portland two years ago for a book signing and Joules and Shevaun were adamant that I meet up with them to go see her. Until this day I had only read a few of Jenny’s blogs, and had never met Joules and Shevaun in person. Despite being in the midst of a flare, it was one of my best days ever. We had dinner and laughed and we got to meet who is now one of my personal heroes.

photo

5. My other lame claim to fame, I’m the second from the left and the guys? They would be Duran Duran. The only time I’ve ever won anything, I won a call-in contest to a local radio station and got tickets to a meet and greet Duran Duran was doing before a concert in Portland. I actually got to ask the guys a question and have it answered, which was both nerve-wracking and exhilarating.

MercuryCapsule

6. My guys again. This was weekend before last, at Evergreen Aviation & Space Museum. They’re standing in front of the Mercury capsule, which Scotty was very excited about seeing. If you’re ever in Oregon, you’ve got to check this place out, it’s full of awesome.

WiffleBall

7. Wiffle ball in the park. In what was probably the sweetest gesture ever, my son asked his future step-dad if he’d like to play ball with him. So we trekked to three different stores to find a wiffle ball set (because that’s what the kiddo wanted) and then we spent the afternoon in the park. The boys played and I walked Todd around while I tried to get as many pictures of this moment as possible. My heart, it melted that day.

WeirdCar

8. Last week we went to dinner with my sister before she took my kiddo to her house for a few days. On the way to dinner, we got stuck behind what is probably the oddest car I’ve ever seen. Yes, that is WOOD. And it’s probably held together by all the bumper stickers, which is why it couldn’t go over 20 mph.

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9. Though the sign calls it “The German Wall,” this is, and always will be, a part of The Berlin Wall. This was actually at the above mentioned space museum. While many people my age may or may not remember the wall coming down, my family was actually stationed in Germany when the wall fell. I was just seven years old and watched it live on local television. I never thought I would see the wall again, and then…I turned the corner and there it was. Honestly, I’m still a bit shaken.

photo (5)

10. I’ll leave you with one more photo of my adorable doggy. This was just after his last grooming. He has so much character and attitude, it’s hard to capture it in pictures, but I think this one gets a little of it 🙂

Don’t forget to pop on over to The Leiber’s to check out the other posts in this awesome link up. Or better yet, dig through your phone and link up yourself!

Truthful Tuesday: I Love The Rain

There is a brief little storm moving through our area and I could not be happier. The high temperatures have dipped back into the seventies and there is an intoxicating smell of freshness pouring in through my windows.

I’m reminded of one of my favorite songs from the nineties, Blind Melon’s No Rain.

And so while you do the bee girl dance, here are some other tidbits for this drizzly day.

*I’ve been working behind the scenes to make my blog a bit more professional. I’m now copyrighted (woot!) and have a legal/disclosure page, just in case.

*I’m also working on starting a new Saturday series for the blog where I feature guest posts. Interested? Email me at becominneurotic (at) gmail (dot) com.

*I’ve been approached to contribute to a health website. As I can share more information, I will, but suffice it to say I’m extremely flattered and very excited.

*It was recently discovered that Scotty (my fiance) and I have never been bowling together in our near five years together. This will hopefully be rectified for our birthdays next week. I may have to granny-ball it, but I’m totally looking forward to it!

*Our new upstairs neighbor is turning out to be very nice. He actually came down to apologize for making noise while putting together a shelf and working on his vacuum cleaner. It’s a bit of a novel feeling, having neighbors that aren’t complete asses. Also? My dog didn’t growl at him, which is a pretty good sign.

*I get to see my favorite lady tonight. I’m looking forward to her great hugs, some wonderful chatting and visiting, and to a fresh look. It never fails, a trip to Cathy’s leaves me with my heart full and feeling more human.

*While I’ll have posts up next week, I will technically be out. I’m having a medical procedure on Monday and will be taking the rest of the week to recover and rest up in order to be ready for my son’s arrival that weekend. Hopefully by next Friday we’ll also know whether or not insurance will cover the Remicade infusions my rheumatologist wants to start me on. Fingers crossed!

Truthful Tuesday: Summer Is Here

With temperatures reaching the nineties this week, summer is most definitely in full swing. Normally summer doesn’t start for us until my son gets here for his visit, but the weather has other plans this year.

Since the heat is bearing down and it’s not even noon yet, my brain is naturally fried. So here are a few truths to hold you over until I can think straight again.

*I was not made for extreme temperatures.

*I had forgotten how much I love A Walk In The Clouds until this morning.

*It’s always been a dream of mine to stomp grapes, ever since I saw Lucy do it in Pretty Woman.

*My rheumatologist wants to start me on Remicade infusions. Now we wait to see if my insurance will approve it.

*For my birthday this year, I’ll be getting a colonoscopy and endoscopy. I was kinda hoping for a mani/pedi instead.

*I’ve always dreamed of being serenaded.

*I ran into an old “friend” this past weekend. While we had a nice chat, catching up, my heart remembers all the hurt she and another caused me. And I’m hesitant to put myself out there again.

*The TENS unit I received has been working wonders on my lower back pain. I HIGHLY recommend them.

*My fiance never ceases to amaze me with the depth of his love and care for me. I am so very lucky that he has stuck by my side through everything.

Truthful Tuesday: Mercury Retrograde Sucks

My soon to be father-in-law is an astrologer. I knew nothing about Mercury or its cycles until I met him. While I keep a level of skepticism in regards to things like astrology, I do know there’s a kernel of truth in most things.

These past few days have proven that whatever is moving in the cosmos, it doesn’t like my household so much. Here’s just a few things:

*My fiance shattered his iPhone screen.

*My mother had a complete meltdown and finally admitted that she is an alcoholic and needs help.

*Google Chrome decided to just stop working and I had to uninstall and reinstall it on my laptop. In the middle of calming down my mother.

*My fiance’s workplace has gone from a three man operation to a two man operation. The stress levels are astronomical.

*My iPhone decided to lose all of my contacts. Not sure how, not even sure how I fixed it, but they just as suddenly all came back.

*Saturday evening I slid into a full-blown flare- joints, muscles, tummy issues, headaches- the works. I’m headed back to the doctor today to see if we need to switch something around in my treatment.

*Ants have once again invaded our apartment. We’ve cleaned, we’ve laid traps, we’ve sprayed- they keep coming back. If anyone has any genius ideas, I’m all ears.

 

Truthful Tuesday: Random Thoughts

There’s been a lot of stress in my household lately.

Finances are tight, work is stressful for my fiance, my health has been a little more frustrating than not, the list goes on. When I’m stressed, my thoughts become scattered and swirling, rarely slowing down long enough for me to complete anything.

Today is one of those swirling days. I have many thoughts, but they aren’t all necessarily connected. And because I can, I’m sharing them with you:

*I am blessed to have my internet friends, they have become the very best kind of family.

*There are many things I need to make happen in the next ten days and I have no idea how any of it is going to work. This is a huge part of my anxiety right now.

*After over two years battling IBS symptoms, I’m finally able to see a gastro specialist. My appointment is at the end of June, and I am both nervous and excited. This will hopefully be a big step in the right direction.

*My doggy is the best thing that could have happened in our lives. He’s been a light in my days and never fails to make me smile.

*Summer temps are here and I’m trying to be grateful. But in my perfect world, it would be mid 70s with a light breeze. These 80 degree days with humidity have me wilting by noon each day.

*The very loud and unruly upstairs neighbors have moved (FINALLY) and my home has never been more peaceful. I’m selfishly hoping the apartment doesn’t get rented anytime soon.

Truthful Tuesday: Female Edition

Full Disclosure:

Today’s post mentions items of a girly nature. For my manly men-type readers, I suggest checking out the work I’m doing with Spoons 4 Spoonies and our campaign to expand our reach. Go ahead guys, my feelings won’t be hurt.

In fact, if all y’all would take a look, that’d be great. I’ll wait here…

Awesome, right? I know.

Now, for some not so awesome things about being a girl. Because hormones.

*Though I am happy my body is finally doing what it’s supposed to be doing (for once), these cramps are BS.

*I need a maid.

*Mother Nature has decided that I should PMS and flare in the same week. She has a wicked sense of humor, apparently. I’m not laughing.

*If I must pluck one more white hair from my face this week, I will start stabbing things.

*Why is there never enough chocolate?

*Heating pads when it’s 80 degrees outside feel more than a little ridiculous.

*If I start bawling at another stupid commercial, I’m going to scream.

*Can someone please explain why my pants are falling off my ass but the number on the scale isn’t going down?

*My hormones want me to be cuddled and loved on. My hyper-sensitive body doesn’t want to be touched. This is why people are homicidal.