Category Archives: Hope

Hope Rheumatoid Arthritis

A much needed dose of hope

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Today I *finally* saw my new rheumatologist (in case you missed it, my previous doctor retired in November, coincidentally when one of my worst flares decided to start). I had such high expectations for her. The funny thing is, they weren’t concrete expectations- like a good listener, researched focused, etc. I was just looking forward to seeing someone who understood my disease and could maybe help me. That simple.

She started the visit about 30 minutes late. Continue reading

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Hope Rheumatoid Arthritis

Don’t make decisions for tomorrow based on today. 

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Today was one of the worst days I’ve had in my five year battle with Rheumatoid Arthritis. I woke up hurting but taped myself together and took three tabs of ibuprofen as I dropped my son off at school.

As soon as I got on the road to start my 50 minute commute, my elbows (freshly taped this morning) were so painful and felt so weak that I had to switch back and forth between each arm to hold the steering wheel. My hands started swelling and my knuckles wouldn’t crack, no matter how hard I tried. I grabbed my heavy compression gloves and put them on at a red light.

My knee decided to join the party a few minutes later. Since I was driving, there wasn’t much I could do except massage it (and punch it) with the tennis balls I keep in my center console.

By the time I arrived to work, my eyes were red from crying and I was exhausted.  Continue reading

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Hope Rheumatoid Arthritis

Grateful Body

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I have had a Get Fit Book in my drawer for over a year. It got depressing to use because my body, especially my joints, is a constant source of disappointment.  My body doesn’t move the way I want it to, when I want it to. It’s required multiple surgeries, constant medication, and is completely unpredictable.

I pulled out my fit journal tonight and prepared to throw it away. And then I thought about it. Continue reading

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Family Hope

Regret

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You’ve heard it before “make sure you tell someone you love them, you may never see them again”. I make sure I say “goodbye” and “I love you” to my kids every morning and night. If I died tonight, they would know I loved them. Not because I said the words often. Because they felt it. They know just how important they are to me, they know that I would do anything for them.

But that’s not true with everyone in my life and I think it’s safe to assume that it’s not true for you either. Continue reading

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Hope Rheumatoid Arthritis

Validation 

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A few hours ago, I spoke with my rheumatologist about this nasty flare that I can’t seem to kick. We agreed on the cause, my father’s death recently, but we’re at a loss as to what we could actually do about it.

My pain management doctor had me do a course of steroids which, for the first time ever, made no difference. My allergies and asthma were fantastically controlled but that was it. My joints remained swollen, the pain continued to be intense, my temperature still rose, and my fatigue was just as debilitating. My rheumatologist agreed that I had taken a high enough dose where I should have felt and seen a difference.

We also agreed that it was too soon to throw in the towel Continue reading

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Hope Rheumatoid Arthritis

I am not my burden

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Steve Rosenfield joined fellow Rheumatoid Arthritis advocates at our Joint Decisions Empowerment Summit in  Philadelphia almost two weeks ago. Simply put, the What I Be Project by Steve Rosenfield is a “photo project which focuses on building security through insecurities”. If you haven’t heard of this project before, do me a favor and click on the link- it’s an amazing idea.

molly

“I am not my burden”

My biggest insecurity? Asking for help. Accepting help. Feeling deserving of help. My diseases are a burden to myself and to everyone around me- family, friends, coworkers. They are a financial, emotional, physical drain.

My medications are so expensive, why should I feel that it’s ok to spend extra money on getting my hair done or buying lunch? I don’t deserve “treats” because I am a financial drain on my family. Continue reading

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Hope Rheumatoid Arthritis

Hopeful not hopeless

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I’m in the midst of a massive flare. A flare that just keeps coming, no breaks, and to me, no end in sight.

With a root canal scheduled for this past Thursday, I decided to skip my methotrexate the weekend before (I have now been off of it since the beginning of June). Dental work is tricky and with all of the bacteria involved, I didn’t think the risk was worth it.

That root canal involved three hours in the dentist chair and I left with only 90% complete. I have a very considerate dentist who propped my mouth open for me but just having it open that long threw my jaw into a flare. It hurts tremendously and I’ve limited myself to soft foods for the past 4 days.

So this weekend, I had to skip methotrexate, again, since I won’t be back to the dentist until a week from now (which means, you guessed it, no methotrexate next weekend either).

My knee had progressed so well in PT that I really saw the light at the end of the tunnel. I had a new med plan- I have my first Simponi Aria infusion later this week and felt that I was days away from starting back at the gym.

That light is so dim now, I can barely see it. But I’m going to focus on it, make that light at the end of the tunnel a bit brighter.


A little over four years ago, I couldn’t walk. I can walk today with a slight, yet endearing limp (or swagger you may say). Four years ago, I couldn’t reach my face with my left arm because my elbow was locked. Today, I was able to knit. Four years ago I was hopeless. Although it may seem like it today, I’m not hopeless, I’m hopeful. I’m hopeful that my new meds will work (in time, of course). I’m hopeful that I’m going to return to the gym, stronger than ever. And I’m hopeful because I have such a strong community of supporters near and far. And I won’t let them down.

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Hope Rheumatoid Arthritis

The good thing about RA!

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It’s May which means it’s Arthritis Awareness Month. I’m starting the month hungover from methotrexate and suffering one of the worst flares I’ve ever experienced. Last week I had asked you to share with me how Autoimmune Arthritis has made your life better. Better? Yes, better. Would I wish RA on my worst enemy? Never! Am I grateful to have this disease? Heck no. But I have to find reasons for things, it’s who I am. And I have to stay positive. At least a teeny tiny bit. If I let myself get sucked up in the emotions of this disease, the hopelessness of this disease, the pain of this disease, I fear I will fall into a deep, dark place that will completely ruin my life.

So this month, I want to share how arthritis has change your view of people with Chronic Illness. How it’s changed how much you value those quiet moments with your family. How much you appreciate the beautiful sunrise and sunset.

If you haven’t already, please take my one question survey or even respond in the comments below. I’m happy to link your quote to your social media/blog account as well. Click here!

I have much more empathy for others now.

Today’s author’s blog is http://www.curlysuereview.com/ and you can follow her on Twitter here.

 

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Favorite Things Hope Type 1 Diabetes

Only Human and Type 1 Diabetes

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human

I am a regular podcast listener. In fact, I love my podcasts and one of my favorites is Only Human. Today’s episode, The Robot Vacuum Ate My Pancreas, is worth every second of 33 minutes. Today’s topic is Type 1 Diabetes and features Dana Lewis (you can visit her on twitter here) and her artificial pancreas system.

There were two specific moments during this podcast that I felt the need to share this podcast with everyone I know. Hearing other Type 1 Diabetics, especially children and their parents, talk about how much their life has changed by using an artificial pancreas, brought me to tears. I cannot fathom being a parent of a child with Type 1 Diabetes- managing my own disease is difficult enough. Hearing a child’s little voice and then the voice of their parent, I could almost feel their relief coming through my car speakers.

My absolute favorite part of this show was when Kenny Malone compared keeping a car at exactly 70mph while driving, to keeping your blood sugar at the perfect number, was amazing. I have struggled for years with getting others to truly grasp the time and attention this disease demands from me. I think this explanation is going to help me tremendously in getting my disease a bit more understood.

Please take a listen (or read the transcript) and let me know your thoughts!

 

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