Category Archives: Hope

Hope Rheumatoid Arthritis Type 1 Diabetes

Welcome 2018!

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Hi again! It’s been awhile since I’ve posted and like a lot of bloggers out there, I’m going to promise you that I’ll be writing much more in 2018. Writing helps me tremendously, I feel better when I share and feeling better is always the goal!

When I initially reflected on 2017, the word “okay” came to mind. But as I dove in, I realized that 2017 was much more than ok. Sure there was pain, there were tears, there were doubts, but I’m going to focus on the good things:

Advocacy

  • Attending the HealtheVoices conference for the second time was incredible. I was able to meet even more amazing advocates and because of those connections, I was able to work on great projects like fighting the Obamacare repeal and helping Hurricane victims get the medical supplies they desperately needed.
  • I was invited to Pfizer’s ReAl Talk Summit where patient advocates and bloggers like myself, got to help shape Arthritis.com to help Rheumatoid Arthritis patients get the information they need on a variety of topics, not just their disease.
  • Until my health got in the way, I had the privilege of being a Community Manager and writer for CreakyJoints. I learned so much about how to manage my own site better and I was able to interact with some amazing writers- I really suggest you visit CJ and take a look yourself.

2018 already holds a lot of awesome advocacy opportunities- you’ll see me as an advisory board member for the 2018 HealtheVoices conference and as a steering committee member for the Autoimmune Summit in March.

Rheumatoid Arthritis

  • I started seeing a new rheumatologist in 2017 (mine retired at the end of 2016) and she has been a wonderful fit for me. She values my research, loves to hear about my advocacy, and lectures me on getting enough rest (I really need someone to force rest on me and my body!).
  • By the end of 2016, Simponia Aria was added to the list of biologics that had failed me. I tried adding Plaquenil in March and quickly found out that I am incredibly allergic to it. The positive? I won’t have to wonder if it would have helped me, I definitely know it can’t!
  • Knee Surgery- I’ve posted a lot about this so I’ll spare you the details but this major surgery has given me so much pain relief and freedom. Despite the hard recovery, I don’t regret having it done. My surgeon is hopeful that I’ll get a year or many years before having to have the knee replaced.
  • In July I started Rituxan. My rheumatologist told me that although most people get 6-9 months of relief, she thought I should be prepared to get infusions every 4 months based on the severity of my disease. Rituxan has been wonderful to me. My husband has commented that he sees a “pep in my step” which is something I never would have described myself as having. I didn’t realize how much Rituxan was helping until I hit that 4 month mark and started flaring. I’ve just finished up my 2 infusions and hope that early in 2018 they’ve kicked in and my year will be off to a great start!

Type 1 Diabetes

  • This year I also started seeing a new endocrinologist (my previous left right around the same time as my rheumatologist). Even though I happened upon this doctor by chance, she’s perfect for me. Very tech savvy, considers me an important part of all decision making.
  • I left behind my Medtronic 530G in favor of the Tandem T-Slim with Dexcom integration. I haven’t looked back. I love my new pump, love seeing my CGM data on my phone and watch.
  • I had an opportunity to test out the FreeStyle Libre courtesy of Abbott (blog post about my experience coming soon, I promise!).

POTS (Postural Orthostatic Tachycardia Syndrome)

  • This is a new diagnosis and you might wonder, why is this filed under the good things of 2017? For almost two years, I have struggled with dizziness and a racing heart when I stand. I tried to ignore it but over these past few months, the dizziness was so bad that I would see black spots, vomit instantly (like in the kitchen sink because I couldn’t make it more than a few feet). My heart rate would be 75 when I was sitting and shoot up to 130 just from standing.
  • Once the symptoms started impacting my quality of life (and scaring my husband), I finally called my PCP who sent me to a cardiologist. The good news is that despite Rheumatoid Arthritis and Type 1 Diabetes, my heart is great! The other good news is that even though my symptoms haven’t improved at all, I now have a name to what I’m fighting (POTS) and have an appointment to see a great specialist in March.
  • Although this condition is incredibly hard to manage, I’m hopeful that I’ll see some improvement in 2018. I also plan to write about my experiences as it’s been hard for me to find a lot of patient advocates/bloggers sharing their stories.

General Wellness

  • In October, I decided to get serious about my overall health. I’m happy to report that as of today, I’m down 28lbs and am starting to feel stronger than ever.
  • Losing weight has helped my sleep and has decreased the amount of pain meds I need to take. Now that I’ve seen results, I’m confident that I can keep going, no matter what comes at me.
  • I’m working on managing my diet as well and that’s a big part of my 2018 plan. All of my recent nausea has had me limit myself to only a few foods that I know won’t make my stomach feel worse. As a result, I’m going to work on slowly adding back in foods and seeing how my body reacts. Something I’ve wanted to do since my RA diagnosis.

I’d love to hear about your plans for 2018 and what you learned from 2017, please share in the comments!

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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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