Tag Archives: chronic pain

An Open Letter To Chronic Illness

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

I resented you when you first showed up. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships, and my body.

But…

BUT.

Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about, now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

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!

#ChronicLife -This Is My Life

Last week I saw a tweet from one of my personal heroes, The Hurt Blogger. She was going to be live tweeting 48 hours in her life, in the hopes to better portray how life with a chronic illness, specifically Rheumatoid Arthritis/Autoimmune Arthritis, really is. No holds barred.

I was inspired, and decided I would join her. Today is Rheumatoid Arthritis Awareness Day, after all, and what better way to raise awareness? So today and tomorrow you can find me on Twitter and Instagram, showing my life without any filters.

Britt (The Hurt Blogger) set out some ground rules for her live tweeting, and I will be doing much the same. During this time frame, I will do my best to accurately portray my life- the good, the bad, and the painful. I will be sharing information about my medications, my routine, and my multiple chronic illnesses.

My goal is simple. I think I do so much to not focus on the negative aspects of life, that I don’t really show the “real” me. I don’t like to dwell on the pain, and so maybe y’all don’t realize how near constant it is. Maybe I don’t show the days where I don’t have enough spoons to manage a shower (like today) or just how twisted and swollen my hands and feet can get. So my goal is to show what I hide, as much as possible.

I hope you’ll follow along with me, and get a better picture of my life. Not because I want your sympathy, but because with more understanding we can make strides in awareness. And more awareness can hopefully lead to more research, better treatment, and a cure.

Tuesday Ten: These Things I Wish

So if you were around on Facebook yesterday, I promised you a 2014 Lookback Truthful Tuesday for today’s post. Then I logged in this morning and saw this prompt from the #TuesdayTen link up over at Rabia’s site, and I knew I had to hop on board.

TuesdayTenXmasList

Don’t worry though, that other post will be coming up before the end of the year!

I’m gonna take a note from Rabia and also break my list into five realistic wishes, and five fantasy wishes. Because, hey, it seems like a great thing to do.

My Five Christmas Wishes

1. New slippers. The ones I have I got from my parents last Christmas, and they are WORN DOWN. I pretty much live in them around my house because my feet rarely stay warm, even in the hottest part of summer. Yay for poor circulation! Anyhow, nice fluffy slippers, preferably with the memory foam soles. And a fun, bright color or my favorite sports team.

2. Portland Winterhawk tickets. This is kinda more for Scotty than me, but I would love to be able to surprise him and take him to see our hometown hockey team. He’s fostered a bigger love for sports within me, and it’s always a fun date night with him.

3. New clothes. I’ve lost some weight over the last year, and most of my pants don’t fit well. I’d like a couple pairs of jeans and a few new sweaters or nice shirts to wear out. We don’t go out often (money, yo) but when we do, I want to look nice for my fiance. And of course, I want to dress up on the nights he plays. The future wife of the awesome guitarist shouldn’t look all frumpy, right?

4. New dishes. This one is a little off the wall. I don’t need an actual dish set, per se. But there are a few kitchen tools and silverware that are made arthritis-friendly that would be a great help to me. I’d also love a couple refillable water bottles that are spill-proof and sturdy while still being easy for me to open and shut. I have a tendency to drop or spill things when my hands are bad.

5. A bundt pan. I’ve always wanted one. And now Pinterest has so many awesome recipes that call for one. And I’m over here like… Yeah. So that would be cool. And I promise to cook something lovely for whoever gifted me this. That makes it a win-win really.

My Five Fantasy Wishes

1. A maid. I know there’s probably a lot of women out there who wish for this. Even though the Remicade is working well for me, and I do have a bit more energy, there are still chores that are just physically difficult to impossible for me to do. Scotty tries his best to help out, be he’s been swamped at work. And really? After he’s worked all day, I don’t want to ask him to scrub the bathtub or vacuum the floors. Even if we just had someone who came twice a month for a few hours, it would be such a great help.

2. A world where we all practiced more kindness and compassion. I know I always say “Be the change you want to see.” And I firmly believe that. But I’d like to jumpstart that change, and just sprinkle fairy dust on us all. I want to spread compassion instead of hate or judgement, kindness instead of indifference, love instead of hurt. I want to see people smile to one another on the street, I want to be able to watch the news just once without crying. I want to live in a better world.

3. Our dream house. One with a bedroom for my son, and a spare room for guests. One with a music studio for Scotty and a craft room for me. One with a yard where our doggy can roam and run to his heart’s content. One with a library filled with the books that so warm my soul. One with a chef’s kitchen and a dining room where I can host dinners. One with a glorious master bathroom designed to meet all my needs, including a jet tub to ease my achy body. A place to make our forever home and grow old together.

4. A new car. Ours has been trucking along for a few years now. We keep putting just enough into it to keep it from breaking down, but there’s always that worry. My medical bills hit us hard, and we just can’t afford a new car right now. But to get one and not have to worry would be such a blessing.

5. A way to help my loved ones. I’ve often dreamed about winning the lottery and being able to help those closest to me. I want to help Teala pay off her schooling, and help Tracie’s family find their forever home. I want to send Dawnie on her next adventure, and maybe go along with her. I want to visit my gal Fallah and get to spoil her and her little bundle of joy, take her on a spa day and maybe a little vacation. I want to open an animal rescue for my friend Natalie, where she can save all the animals and spread her love to them. I want to find a forever home for Shevaun where her girls and she can have their own vegetable garden and a yard to play in, a place she and her husband can make new memories with their awesome kiddos. I want to reward our Cathy and pay off her salon and home so she can continue doing what she loves but not push herself too far just to pay the bills. The list is long but they are all deserving, there are many who’ve helped us throughout the years who I would love to repay in the biggest way.

I thought about asking for a life free from pain. Certainly there are days where I wish this. But ultimately, this pain has shown me how incredibly strong I can be, and has lead me to follow dreams I always thought were impossible. I am a better me because of this life I now lead, and while I might wish for the ease of no pain, I wouldn’t want to lose this stronger, more confident me, or the lessons I’ve learned along the way.

What’s on your Christmas list this year? What are your fantasy wishes?

Cooking With Spoonies: Chicken Enchilada Soup

It’s been a week of fighting colds here.

Tuesday started with Scotty being sent home from work sick. The week continued with him also missing Wednesday and Thursday. We bundled up in jammies, downed the cold meds every 4-6 hours, and napped sporadically while attempting to hack up one or both of our lungs.

So it seemed like a great time to try a new soup recipe. Obviously.

CookingWithSpoonies

I found this gem on Pinterest and had been meaning to try it. When the time came, I realized I had only some of the ingredients, and other bits that I could substitute in. So here’s what I did.

For the chicken, I used some leftover taco chicken I had from earlier in the week. It was about 4 cups shredded, as well as a cup of leftover cooking liquid.

I only had a small can of green enchilada sauce, so I used that, the cooking liquid, and a single can of chicken broth for the base. I added all this and the chicken to my crockpot and cooked it on low for about 3 hours.

At that point, I bumped it up to high and added 1 package of cream cheese, cubed. I allowed this to cook for about an hour, then I added 2 cups of instant rice and 2 cups of frozen corn. (I’ll interject that the rice continues to puff up, so in the future, I will only add 1 cup. Otherwise it becomes more a dip and less a soup. Lessons learned.)

That cooked for about another 30 minutes and viola! Dinner is served.

ChickenEnchiladaSoup

We topped ours with a little shredded cheddar cheese and a dollop of sour cream, and served it with our favorite tortilla chips. It was warm, creamy, and just a tad spicy. The perfect meal for a sick day.

I hope you’ll give either version of this recipe a try. It’s crazy easy and absolutely a great meal for these cold, wintery nights.

Oh! And while I was attempting to hack up a lung, my first guest article for RheumatoidArthritis.com went live. Pop on over and see my tips for the loved ones and caregivers of an RA patient.

There’s Always One More Thing

It would appear I’ve picked up yet another cold.

Like I needed another thing on my plate.

This past month has seemed like one thing after another. I’ve done my best to stay positive and just keep rolling with it, but at some point, we all break. I’ve kept much of what’s going on quiet for two main reasons. One- we still have more questions than answers. Two- I really didn’t want to be a downer. I wanted this holiday season to be filled with light and joy. And so I just kept plugging away, decorating our home and making plans.

Then this cold came.

I woke up Saturday feeling mostly fine. I had a little stuffiness but figured it was due to the dry air, as it’s been cold and we’ve had the heat turned up. I went with Scotty to visit his dad that afternoon, and then went out that night to watch Scotty play. By the end of the night, I was sneezing away and felt like my head wanted to explode. Last night, I knew it wasn’t just allergies or dry air, I could hear the cough rattling in my chest.

And that’s when I wanted to break down. Because I’m tired of being sick. I’m tired of cancelling plans and having to reschedule and back out of promises. I’m tired of doctor appointments and tests and more medicine. I’m pissed that once again I have to push back my Remicade infusion, leaving my body open to further pain and complications.

Because it isn’t just about the cold.

It’s the TMJ diagnosis and finding out there’s joint erosion in my jaw. That I may need surgery on my mouth. That there are days where talking is painful. It’s the bouts of temporary paralysis while dreaming and/or waking up that terrify me. It’s the overwhelming signs pointing that stress is taking its toll on me, and the overwhelming amounts of stress that keep pouring in. It’s the nerve pain that shoots down my legs.  It’s the sleeping problems, the headaches, the soft food only diet, and oh-look-mother-nature-decided-to-visit-this-week-as-well.

It’s the feeling that it’s always ONE MORE THING with me.

It’s the worry I see on my fiance’s face, even as he’s trying to be so strong for me.

Today I go in for an MRI of my brain and I’m waiting to hear back on when I can get scheduled for the EEG the doctor ordered. I’ve cleared my calendar for the week and am bundled up with hot tea, Mucinex, tissues, my heating pad, and Austin Powers. I’m doing the best I can to practice self-care, while working to let go of the negative and focus on the happy.

I appreciate all of your comments, love, and support. I will do my best to keep writing and sharing my path. But if I miss a day here and there, or don’t get to my email right away, know that I’m taking care of me- one thing at a time.

 

Small Victories Sunday: What A Week

The lovely Miss Tanya from Mom’s Small Victories has been completing #NaBloPoMo along side myself and others this month. She’s been a great inspiration in our little Facebook writing group, and though I was aware of her site before, it’s been wonderful getting to know her a bit better, and connecting with a fellow RA fighter.

On Sundays, Tanya hosts a link up to share our victories and inspiring posts to help others live the very best lives. All month I’ve been wanting to link up, but one thing or another prevented me. Mostly, my silly head telling me I didn’t have any victories. Pfft.

Small Victories LinkUp

This week was a whirlwind in my house, and though there was much stress and pain, I ended it on a wonderful high note. And so that is my victory.

Last night I dressed up, did my makeup and hair, and went out to watch my fiance play. Sure, I’m still battling these awful headaches with the TMJ, and yeah, at home with my heating pad was probably where I should have been. But I adore watching him play, and I knew my soul needed to see something other than my own four walls.

And you know what? I got the best compliment last night.

“You look like the old Tia again.”

I know that might seem silly, or possibly even insulting, to some of you. But it meant a lot to me. I don’t *want* to look sick. I don’t want to look like the pain that is ravaging my body. Sure, it might make some social situations different if people could see what I go through, but I don’t want their pity. And that’s what it would be, if people could see.

Last night was wonderful for so many reasons. Yes, I’m paying for it today. But for a brief moment in time, I was the old me again, and it felt good. It felt really good. And now I know, it is possible to meld these two people together, to have the old me and this new me inhabit the same body, and to become the very best me. Someone who can celebrate life, even at a dark moment.

Someone I adore dearly is also out there being awesome despite chronic illness. If you missed it yesterday, be sure to check out my interview with Dawnie. She shares how she’s living a life full of victories, no matter what.

What is YOUR victory this week? Link up with us, or share it in the comments. Let’s celebrate together, I’ll bring the dessert!

Living Better: Interview With My Guru

Dawnie is my personal guru and all around speaker of all the wisdom.She has battled chronic illness for the better part of a decade, and uses the knowledge she’s gained to help others on their paths. She can be found sharing her life at The Dawnie Project.

LBMyGuru

Dawnie recently agreed to let me interview her. It went something like this.

1. You were the first person to introduce me to Christine’s Spoon Theory, and the term spoonie. I distinctly remember that moment, because it changed how I saw myself, and how I could understand my new life. How did you learn of the Spoon Theory and was it a similar experience for you?

When I was first diagnosed I went into shock with anger. It was two and a half years in. I had spent that time trying to fix my pain, only to be told that I had an incurable condition. I spent a few months feeling sorry for myself, pushing everyone away. Then I woke up in the acceptance stage and started looking for a support group. I believe it was the second meeting when someone mentioned the spoon theory. I looked it up online, and had my a-ha moment. That was the day I stopped treating myself like I was sick, and started advocating instead. I no longer wanted people to think of me as broken, but rather to understand why 9 out of 10 times I had to say no but that it was worth asking me for that 1 time I could say yes.

2. You’re one of the few people I know who have found a balance between western and alternative medicine, and a medical team who works with you to maintain this balance. Can you share some tips for people who are looking to incorporate more homeopathic means of care?

The first few years post diagnosis were filled with specialists providing opinions on various treatments to help with issues connected to my condition. When a doctor suggested I join a drug trial not yet approved in the US I stopped. I fired all my specialists and told my family doctor I wanted to try alternative medicine. I got lucky that she agreed to help me.

I found an acupuncturist who worked on my allergies, my pain, and my insomnia. Within a year I went from 9 drugs a day down to 2. I then took a leap of faith and flew to NY to see a homeopathic doctor who started in western medicine and tired of seeing his colleagues push drugs. He walked me through a variety of tests to determine what supplements my body was lacking, what supplements my body could handle, and what foods might boost my immune system without adding to the imbalance. He was expensive ($1500 plus travel) but he might have saved my life.

Homeopathic medicine doesn’t work for everyone, just as western medicine doesn’t. Western medicine failed me, but that’s not the fault of the drugs. My body simply didn’t react as expected. I think anyone with a chronic or incurable condition should research all options for relief. Acupuncture and supplements combined with a specific diet put my condition into remission, but I know a dozen others it didn’t help. If I could offer one piece of advice it would be to knowledge share for research purposes. Oh, and fire any doctor who won’t listen to you with compassion and empathy.

3. We all have days where we pull the covers back up stay in bed. What are your go-to comforts for those yucky days?

Remission doesn’t mean every day is a good one. I still have side effect conditions that are active, and flares now and then. When that happens I like to curl up on the couch with a fuzzy blanket, some hot tea, and whatever movies I’m in the mood for.

4. You’re a frequent traveler, both around the US, as well as a recent trip to Africa. What are your top tips for making a vacation as great as possible, in spite of chronic illness?

I’ve always loved to travel, and for the first few years of my condition I wasn’t able to, because I told myself it was too hard. I let myself take the easy way out and suffered because of it. Eventually I buckled down and made a list of what it would take to make travel work for me again. My packing list expanded to include drugs, supplements, teas, heating pad, slippers, and whatever else I would need to give me the comforts of home. I researched my destination to learn the layout, as well as travel to get there. If flying I made sure I had an aisle seat so I could move around. If driving I looked up rest stop locations so I knew how many miles between. I packed snacks that I might not find on my travels. I did whatever it took to reduce the stress of the unknown. I became an over packer, but it was worth it to be able to go.

5. Something we’ve discussed much here on the blog, as well as in many conversations you and I’ve shared, is the effects stress can have on our symptoms, and possible flares. How do you combat the everyday stress of money, life, family, etc?

Having a chronic incurable condition is going to be stressful, even in remission. That’s life. The best thing you can do for yourself is to stop fighting it. Accept your limitations, decide how you’re going to work around them, how you plan to occasionally test them, and then live your life. You will never be the person you were, because people change with time. Deal with it.

6. Because of you, and friends like you, I’ve been encouraged to chase dreams, in spite of chronic illness. What is something you’ve done since your diagnosis which you never dreamed you’d be able to achieve? What goal are you currently working towards?

I have always wanted to travel to Africa and the Serengeti. After being diagnosed I thought it would be impossible. There were simply too many comforts of home I would have to leave behind. What if I’m in pain there? What if I get sick? What if I stop worrying about what if and start plotting how to make it work?

It took a 20 hour flight to get there, with 6 days in the wild tracking the great migration, and then a 25 hour flight home. Without a doubt I had to let go of comforts of home to make it happen. But it was worth every moment. When you let go of your fear and anxiety you discover a whole new world of possibility. Driving around on bumpy dirt roads in an old jeep wasn’t easy on the body, but then we’d stop twenty feet from a lion resting on the side of the road and it would take your breath away. Suddenly that ache didn’t feel so bad anymore.

My next goal? I haven’t dreamt it yet. Whatever it is, I’ll find a way to make it happen.

 

I can’t thank Dawnie enough for sitting down with me to share her wisdom with all my readers. If you’d like to know more about her and her path, be sure to follow along at The Dawnie Project. 

Wordless Wednesday…With Some Words

Because it’s always easier to bear the pain ourselves, than to watch those we love suffer.

JamieFraser

I always say I have it easy being the sick one. While it’s no fun being in pain, and dealing with chronic illness, I would take this any day over watching Scotty suffer. He often has the raw end of the deal, having to hold my hand, without being able to help me feel better.

If it were you, which side of the bargain would you choose?

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.