Tag Archives: truths

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 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!

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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.

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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.

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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: 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: I’m Scared

I really like it when Dawnie does her Truthful Tuesdays and so I’m going to try to do it as often as I can. Count it as part of my therapy.

My truths this week:

*I am terrified by the changes in my Rheumatoid Arthritis flares and symptoms. I am counting the days until I can see the new rheumatologist and praying they will be able to help me.

*I feel like I’m not as good of a friend as others are to me.

*While I’m excited to be beginning therapy, I’m nervous to be delving into some unresolved issues. I’ve worked so well at stuffing things down, it’s scary to bring them back to the surface.

*I am looking forward to a chat with Tracie tomorrow with child-like excitement. I’ve missed her face dearly.

*I have a few new projects, but they involve putting myself out there a bit more. I’m scared of rejection and have been procrastinating HARD.

*I am so ready to be done with these steroids. My face is puffy and I want to eat everything in sight.

*I REALLY want pizza for dinner tonight.

I’m That Girl

I’m the girl who is learning how to take care of herself, both body and mind.

I’m the girl who will do something just because you told her she couldn’t do it.

I’m the girl who believes butter, bacon, cheese, or chocolate can fix anything.

I’m the girl who knows when it’s time to seek the help of a therapist.

I’m the girl who doesn’t like roses or the color pink.

I’m the girl who loves care packages, both making them for others and receiving them.

I’m the girl who has recognized that her coping mechanisms are no longer working.

I’m the girl who cries at every single military home-coming/ceremony movie, commercial, or video. Every. Single. Time.

I’m the girl who loves quickly and fiercely.

I’m the girl who adores candles.

I’m the girl who is reaching out for help with one hand, while offering help with the other.

What kind of person are you?

**My gal Dawnie does this style of post on occasion and they always stick with me. Thanks for the inspiration, lovely lady. And for not kicking my butt when I steal your ideas 😉