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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Type 1 Diabetes

Diabetes Label

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It’s hard not to feel like you’re failing at some point when living with Type 1 Diabetes. Whether it’s a missed bolus, high or low blood sugar, or just public stigma, diabetes can make you feel unsuccessful.

I logged into my hospital’s patient portal today and happened to notice this at the top of my report, from my latest endocrinologist appointment. 


Well controlled. Well controlled? Me? I have a 7.1 A1c. Do a quick search on google and you’ll find plenty of people who only think something starting with a “5” is good. 

A level of 7.1 equates to about a 157 blood sugar average. And, in my opinion, that’s not horrible! Not only do I deal with Type 1 Diabetes but Rheumatoid Arthritis as well. Pain, stress, inflammation, and a flurry of medications all mess with my blood sugar. Not to mention trying to maintain an acceptable blood sugar just dealing with LIFE.

So, well controlled? I will gladly accept that diabetes label.

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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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Rheumatoid Arthritis

I miss methotrexate 

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I miss methotrexate. In my four long years of sparring with Rheumatoid Arthritis, methotrexate has been my arch enemy. I hated it. I hated injecting neon yellow liquid into my body. I hated having to keep ginger ale and Cheerios on my nightstand every Saturday night. I hated sleeping away my Sunday. Sleeping away a day that could’ve been spent with my family. I hated being white as a sheet because I felt so awful. 

Enter Arava. I was off Humira and methotrexate for 6 weeks while I underwent knee surgery. I met with my Rheumatologist last week and she thought it was a perfect opportunity to reevaluate. I agreed. I explained how I hated losing time to methotrexate. How awful I felt after injecting it. She suggested we give Arava a try. 

I was nervous to start, but then again, everything makes me nervous. Having Type 1 Diabetes, I’m extremely protective of my organs. But I bit the bullet and downed my first Arava pill on Saturday. 

Nauseous? Yeah. That was to be expected. High blood sugars? Uh, no. That wasn’t on the list of side effects. I reached out to my endo who spent time researching Arava and found 1-3% have a blood sugar increase. Figures. It wasn’t too crazy so I figured I’d at least give it a few weeks. 

Enter high blood pressure. I decided to check it and it was much higher than usual. Tonight I checked again, and again it was high. Too high. 

I’m not taking another Arava pill (message sent to my rheumy). This isn’t worth it. You might argue that I didn’t give it a chance. But losing a day to methotrexate, in my opinion, is ok compared to my blood pressure and blood sugar going up. 

And you know what? I actually feel pretty good. Did I waste time on a med that I now have to remove from my body? Yeah. But I tried. I learned and I tried. And that’s good enough for me. 

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Chuck It List Rheumatoid Arthritis Type 1 Diabetes

Chuck It

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If you have a chronic illness, you can spend a lot of time thinking about what you want to do, but can’t at the time. Your bucket list can go on and on and sometimes it feels achievable while other times it can be depressing. 

Let’s change things up. What would go on your Chuck It list? (Your Chuck It list is things you have done and will never do again and/or things you have zero interest in ever trying) 

For me the following things come to mind:


Tilt-A-Whirl? Nope, never again. Pretzel M&M’s? Yuck. Drink a glass of milk? Not since I was 9 (there’s a story there you can read on my first post…) and hopefully never again. 

I’ve created a Pinterest board so in addition to pinning all over the wonderful things I hope to accomplish as my illness allows, I can also have the power to pin things I have no interest in ever doing. 

I’d love to hear what would go on your Chuck It list- please share in the comments!

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Rheumatoid Arthritis

Doors are Closed for the Disabled

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This is the first time in my life that I’ve been on crutches. Other surgeries were wrists..lower body injuries always got me a glamorous Velcro boot. 

I’ve only had Rheumatoid Arthritis for four (extremely long) years and I know that the possibility of another surgery, injury, disability..is pretty good. Sure, that sucks. But you know what sucks more? 

The world is not accommodating for people with disabilities at all. I know, I know. Newsflash, right? No. 

The week after my surgery, I got sick and decided to run up to Patient First (translation- hobble to my mom’s car and have her drive me). I got up on my crutches and got to the doors. They were regular, pull handle doors. Two sets of them. No handicap button, no option for me to open them on my own and not risk injuring my recovering knee. 

In case you aren’t familiar, Patient First is an urgent care clinic where people go when they are sick. When they have injured their leg playing soccer, or hurt themselves on the job. And the doors aren’t accessible to people without two working legs and arms. Totally makes sense. 

Moving on- I came to notice doors at every single place I went to. 7-11? No slurpee for you, young man using a cane. Old Navy? Nope. (You didn’t think people with a disability should be able to shop for their own clothes did you?). Physical Therapy? Nope- so pissy about that one. 

If I’m understanding things correctly, those of us with a disability- permanent or temporary should only be able to visit the pharmacy and the hospital. That’s all we need right? 

Wrong. 

If you’re a business owner, listen up. I don’t claim to know the first thing about the expense of handicap accessible doors. I’m sure there are building code and security issues as well. But what I do know is that everyone has a right to go to any business they like and be able to get in the door. 

So what can you do? 

  • Install a doorbell. A simple button that someone at wheelchair height can utilize to alert someone inside that he/she needs assistance. Go visit a gas station pump, you’ll see one there. 
  • Utilize your greeter. So many businesses have someone standing/sitting at the front door to greet customers. Train them! Empower them to look for those in need and be ready to assist. 

As a fiercely independent person, crutches were a big blow to me. Luckily for me, there was an end in sight but plenty of others are going to be using crutches, canes, wheelchairs forever. Please don’t lock us out. 

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Favorite Things Rheumatoid Arthritis

Mo’s Dream Cream Review

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Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

As you’ve read in countless posts by me, I take a lot of pills. And although some of my pain can only be relieved with a pill, there are times when I will try everything I can to avoid taking one. I have lidocaine patches (great relief, if you can get them to stick to you…forget about large joints that you might want to move and keep a patch on at the same time), prescription NSAID gels (work pretty well but the smell leaves a lot to be desired and the copay can be expensive), and every over the counter cream you can think of (yes I own BENGAY).


Enter a new product into my pain relief arsenal: Mo’s Dream Cream. What makes this product different? It’s all natural. As in legit all natural- you can read and pronounce every ingredient: Capsaicin paste, essential oils, cocoa butter, glycerin. Sure it’s nice to be able to pronounce the ingredients but you know what’s even better about them being all natural? They are safe. Safe to use and to have around pets, children, etc. One of my favorite things that the creator, Keri, told me was that she used the lotion on her Chocolate Lab for his hip dysplasia and he was able to run again! And I absolutely love that the product is named after him and his adorable photo is on the bottle.

What else makes this product different? The product creator and owner, Keri Anderson. First of all, Keri understands chronic pain. She herself has spent years suffering from pain and has taken a variety of pain medications as well. She understands that although a pill may relieve your pain, the side effects can be gruesome (she notes being so confused that it was hard to remember her kids names at times). She also understands that most over the counter creams/lotions typically don’t offer lasting relief.

Keri spent years studying Apothecary and Chinese Herbology in an effort to create a product that would eliminate her pain for a long period of time- long enough to get a decent night’s sleep! She learned how to make her own homemade capsaicin paste that would be powerful enough to eliminate pain but not so powerful that it burned the skin.

So why should you give Mo’s Dream Cream a try? First of all, it works. I was able to use the Pain Relieving Lotion and notice a difference within a few minutes. Sometimes I would need a second application which Keri herself mentioned can be necessary with severe pain. Secondly, the scent. This product smells nothing like those drugstore creams and lotions that you’re thinking of. It doesn’t smell of chemicals- it smells fresh and clean. Even I was surprised that the cayenne sent wasn’t as strong as I expected.

Want to give Mo’s Dream Cream products a try? Use code “MOLLY4U” at checkout and you’ll get 10% off of all products/promotions. This code never expires! Click here to visit their site and please let me know in the comments if you purchase a product! I’d love to hear your opinion.

 

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Rheumatoid Arthritis

Slow And Steady

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For the previous nine months I had been in extreme pain. Painkillers 24/7 just to take the edge off and try not to throw up. Ice was mandatory just to drive to work. I tried injections, physical therapy. Nothing helped.

Two weeks ago I had knee surgery. I’ll spare you the details- knee cap realignment, degenerated meniscus, lots of cartilage/tissue work. I can already say that it was a success. I am off regular pain meds for my knee (my other joints miss their methotrexate and Humira badly though) and am ready to power through recovery. Or so I thought.

I’m still restricted to using crutches 24/7. I’m 100% compliant on stairs. When it’s a few steps to the kitchen or in my living room, I’m not so compliant. Tonight I went out to grab dinner with my husband. We parked in the handicapped spot and I decided to leave the crutches in the car and walk the few steps in, holding on to my husband for support. I felt a little weak in the knees (awww 😍) but otherwise did just fine.

Fast forward a few hours later. Holy pain batman. My calf muscles feel like I have run a marathon (or what I imagine that to feel like. You all know I don’t run!). Both knees ache, my hips are mad, as is my lower back.

Stupid to walk without crutches? Maybe. But it was eye opening. This recovery is not going to be easy. It’s going to be hard. And painful. I think it was important for me to have this set back. Physcial therapy is going to be rough as is working full time in the office, rather than at home. I need to remember how the few steps tonight made me feel, so that I can focus on going slow and steady.

I’m embracing my new Tortoise Life and the reminder my husband had waiting for me in recovery at the hospital (see Cruiser below) needs to be with me at all times.

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Favorite Things Rheumatoid Arthritis Type 1 Diabetes

PillSuite Review

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Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Anyone with a chronic illness or two, will tell you that managing it often involves pills. A lot of pills. I easily take up to twenty pills a day- usually split into AM and PM doses. I have a great pill case for home but what about when I travel? I usually bring my bottles (which are cumbersome, large, and not good at staying closed), resulting in a ginormous carry on. If I’m just going away for a night, I use ziploc bags. A giant ziploc to hold teeny tiny pills makes no sense. So what’s a pill popping gal like myself supposed to do?

Enter PillSuite.

PillSuite is an awesome innovation in pill storage. You fill up a funnel compartment with a week’s worth of pills. You dump them into teeny little plastic bags, and push the open end into a little green machine with one giant button. Pressing that button triggers the little green machine to heat seal the plastic bag together. It is extremely easy to do and very gentle on my hands which are often not the most cooperative.

When I first received the PillSuite system, I couldn’t wait to go on a trip. I figured that would be when I would use this item. Luckily for me, I did have a trip planned very soon after I received this product. And yes, the PillSuite was extremely helpful for travel. But I learned, it has many more uses for me.

I was recently prescribed Leucovorin, which is a single pill, that I take 24 hours after injecting methotrexate. My injections tend to be in the middle of the day- not first thing in the morning or late at night, when I take my pills. I simply packaged one pill and dated the Suite for each weekend..then I didn’t have to worry about adding a pill to my case or trying to remember if I took it or not.

It’s also helpful for my children- if they go on a sleepover, I can easily pack them the single pill they will need for the day.

Overall, I found the PillSuite system to be easy to use and a great help to me in managing my medication regimen at home or away. 

You can visit PillSuite here and on their Facebook page

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