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Rheumatoid Arthritis

Is your medication still working for you?

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Like a lot of people with multiple chronic diseases, my medication list is long. Some medications, like insulin, are a no brainer for me- they are absolutely necessary. But sometimes I find myself wondering if I still need everything on my list.

When my rheumatologist realized I was losing a lot of time to my methotrexate “hangover”, she asked me to try a half dose and see if that made a difference. It didn’t. I still slept away my Sunday. She asked me to skip a week of injecting methotrexate. And we learned, I still slept away my Sunday. And I felt awful without my weekly dose of that magical yellow liquid. So lesson learned- methotrexate helps me and regardless of my medications, my body needs a day each week to rest and do nothing else.

When I started Rituxan last summer, I quickly learned that it is an excellent medication for me. I’ve noticed over the past 3 months that I have less pain. I still flare and have pain in my damaged joints that I need my breakthrough pain meds for. But I’ve wondered if I really need my Butrans patch?

You might be asking- if your pain is controlled and you’re feeling better, why would you want to change things up? When I initially was prescribed Butrans, my pain was a mess. My pain owned me. I was managing multiple medications during my work day to try to keep my pain somewhat under control. My evening breakthrough meds weren’t always able to bring my pain down.

We decided to try Butrans to get a low opioid dose in my system all day, without having to take even more pills. The hope was that this patch would give me enough relief that my breakthrough meds could really help me. And that is exactly what happened.

Since starting on the patch, I had major knee surgery and started Rituxan. I’ve also lost some weight and worked on my diet (still very much a work in progress).

I mentioned discontinuing Butrans to my pain management physician and she agreed with trying to lower my dose or get rid of the patch completely. But she did ask me to get through the holidays and my next set of infusions before attempting a change.

So here we are. Today I’m going to drop my dose down by 50%. If that goes well for 2 weeks, I’m going to try not using a patch at all. Although I’m staying optimistic, I also realize that my pain may come back rearing its ugly head. And that’s ok. I’ll know that my body needs this medication and it’s worth the cost and side effects. I won’t have to wonder if I need it, I’ll know. And knowledge is all I’m looking for.

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!

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

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

Rheumatoid Arthritis

Live like you’re dying

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The meaning behind “live like you’re dying” is usually to live each day to the fullest as if it will be your last day. But that’s not what I’m referring to.

This past month has been particularly rough for me. Losing my Dad at the beginning of November, set my body into a massive flare. If I’m being honest though, things haven’t been going that well for awhile now.

This is my life:

Mondays- longest, busiest day at work; when I finally get home, I put together a quick dinner for my kids and am asleep by 8.

Tuesdays- I wake up exhausted but power through my morning. Pain is bad but manageable. I try to go to the gym after work which sometimes goes well and other times, I barely make it 20 minutes. I usually have to hit the grocery store before heading home.

Continue reading

Rheumatoid Arthritis

RA patients deserve better bandaids

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It’s 5:00am on Sunday morning. As the rest of my house soundly sleeps, I’m awake. I’m exhausted, woozy, easily confused. One look in the mirror shows that I’m as white as a ghost. I’m so nauseous, there is a diet ginger ale bottle within a foot of me.

Last night I injected methotrexate (see the gorgeous color of this chemotherapy medicine). This is the cause of most of my symptoms right now. 

In addition to all of my methotrexate hangover symptoms, I still have my “normal” RA issues. I’m in a lot of pain right now but unsure if taking pain medications would upset my stomach more than it is already. Just holding my phone to write this post is causing the fingers on my left hand to swell. Continue reading

Rheumatoid Arthritis

What you don’t see

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bino

When you see me at work in the morning, you don’t know what it took just to get me in the door. I drive with the heated seats on, air conditioning blowing, tennis ball lodged between my hip and the center console, an ice pack around my knee, and pain meds on board. Even with all of that, I am still typically gripping the steering wheel in pain, just trying to get to work so I can get out of the car and move my joints.

 

When you see me at the gym, wearing my headphones, working out next to you, you don’t see what it took to get me there. You don’t know that every afternoon, my pain increases substantially, a fever sets in..I feel like I have the flu. Every. Day. I have to convince myself to go to the gym because I know the movement is good for me. There are days I cry on the commute to the gym but power through because I won’t let this disease dictate every single thing I do.

 

When you see me park in the handicapped spot at Target and get out of the car, smiling at my daughter, you don’t see the struggle behind my happy face. You don’t know that one good trip to Target will knock me out for the day. You don’t know that my daughter says she enjoys going with me because I’m funny and we have a good time, but that I know she knows that I need help.

 

If there is one blessing I’ve gotten from my Rheumatoid Arthritis diagnosis, it is that I’m aware of what I might not be seeing. I encourage you to not judge those with a chronic illness, to not question the amount of pain they are in, or how awful their suffering really is. And to go a step further, when you see someone slowly walking across the road, instead of feeling frustrated that they are slowing you down, take a minute to realize that she may be going as fast as she can.

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Rheumatoid Arthritis Type 1 Diabetes

Educating the Doctor

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Today I had the privilege (?) of going to a new Endodontics practice since the root canal, that had already kept me in the dentist chair for four hours, still needed attention. 

I, of course, had the privilege of filling out new patient forms including my medication list and medical history. When I met the dentist, he reviewed what I had written (fabulous start by the way, I hate filling out forms that never get looked at). He said, and I quote:

  • “Looks like you’re in great health” Funny considering there was an actual question asking how my health was on the form. I checked poor. 
  • “Blood pressure good?” 

Yup. That’s all he asked. Thankfully my mouth wasn’t numb, so I could properly respond. “My blood pressure is fine. Just so you know, I wear an insulin pump, in case it starts beeping…” I trailed off as he again asked how my blood pressure was. Is this some sort of new dentist protocol? I know plenty of people are walking around with undiagnosed hypertension. But if you’re that concerned, take my blood pressure. Otherwise, listen to me tell you about the pancreas in my pocket. 

And then I mentioned Rheumatoid Arthritis. Why? Because it’s actually important. Most dentists want to put you on amoxicillin after dental surgery. But that antibiotic and methotrexate can be harmful. 

How about asthma? Last time I checked, breathing was still important, right?

Yes, I’m complaining. So if you’re in charge of creating forms or training new physicians, or just love complainers, listen up. I see the value in your forms. I don’t mind taking the time to fill them out. But do me a favor. Take the time to look at them and ask me about what I wrote down. I promise not to swing my purple pancreas by its infusion tubing and whack you in the head. 

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.

Rheumatoid Arthritis

Invisible

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I’ve had Rheumatoid Arthritis for a little over 4 years. In those 4 years, I’ve had plenty of good days and bad days. I’ve had my share of days where I cried on the way to work, in the bathroom at work, and on my way home because I felt so awful. I’ve had days where I’m exhausted from acting like everything is fine. Because explaining how bad I feel sounds even more exhausting.

Unless you’re my husband, you probably never noticed. But when I recently had knee surgery, I got noticed (yes, I’m a very awkward crutch user). I was (and still am) constantly offered assistance. Everyone has been overwhelmingly supportive- from making sure I don’t walk too much, to offering to fill up my water bottle. I feel incredibly blessed to have such supportive coworkers, friends, and family surrounding me.

But (you could feel a “but” coming, couldn’t you?)- as my knee gets stronger and I spend less time relying on my cane, my Rheumatoid Arthritis disease is still rearing its ugly head. But you can’t see it. It’s still giving me a daily fever, making opening a water bottle excruciating at times, making my body feel like it constantly has the flu. The tears are still falling. But you don’t see them.

Having an invisible disability that for a few months was made somewhat visible is rough now. To know how much support was around me, without having to ask for it, was awesome. It was absolutely incredible. As a fiercely independent person, I hate to admit that I’m going to miss the support. It seems like people think that because I’m stronger, because I’m more mobile, that I’m better. The truth is, my knee is better. My disease is not.