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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

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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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.

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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

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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. 

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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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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.

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Favorite Things Rheumatoid Arthritis

Lidocaine patch tip!

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If you have lidocaine patches prescribed to you, they’re a blessing and a curse. If and when they stay on, they can be really helpful in managing pain. But, depending on where you put them, they may roll off. 

In the past, I tried wrapping an ace bandage around but the pressure made the patch irritate my skin. I’ve tried tight clothing but they still tended to roll. 

But yesterday, I grabbed my cover tape that I typically use with leukotape to keep my kneecap in place:


Three strips covered the lidocaine patch and kept one in place on my knee for all 12 hours! The tape is really gentle on your skin so I had no issues when removing it. 

The tape is inexpensive on Amazon and easy to use. Let me know in the comments if you have any other tips or tricks that work for you! 

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Family Rheumatoid Arthritis

What my daughter thinks of RA

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For Arthritis Awareness month, I wanted to do something special. I wanted to know how those closest to me, see my disease. 

My son, a typical almost 15 year old, laughed and said he’d rather not answer my questions. He does spend his time asking me questions though, which I love. He wants to see the fluid in my hip, calls me “Kobe” when I’m all taped up, and will ask me point blank about my disease. I always know where I stand with him. 

My daughter and husband can be a little more guarded with me. I had initially only asked my husband to answer questions for my blog but when my daughter found out, she begged to answer my questions too. ??? 

Below are the answers that my daughter, Gigi, soon to be 13, gave. I’ll feature my husband’s answers tomorrow. 

How would you describe Rheumatoid Arthritis? As if you were telling your friends. 

 1) I would describe RA as basically a disease that causes your joints to ache, that can sometimes make it harder to use your joints.

Do you understand my disease? Are there questions you have that you haven’t asked? Why?

2) I understand the concept of it pretty well, I just will never understand the pain you actually experience unless I get the disease.

What do you think the worst parts of RA are?

3) I think the worst part is definitely the pain, because it obviously hurts and sometimes you can’t do things as easily as I could do them. 

Do you ever feel frustrated, sad, and/or angry that I have RA?

4) I sometimes feel upset and angry because I don’t think you deserved to have this disease, and I feel upset because of all the pain you’re usually in, it’s hard to experience because I can’t do anything to make the pain go away. 

Do you think your life is or will be better because of your first-hand experience living with someone with a Chronic Illness?​

5) Yes I do think that, because if I ever get the disease I’ll know how to handle it a little easier, and if I ever am friends with someone with that disease I can kind of understand what they are going through.

Are you ever worried that you’ll develop a chronic illness because you’re related to me?

6) I am worried about it sometimes because I would not want to go through all of the pain or mainly have to deal with all of it.

-Bridgette❤️

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