Rheumatoid Arthritis Type 1 Diabetes

Perspective

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My first infusion was done in a small room with only two infusion chairs. Last week, was my second infusion of Simponi Aria and it was in the “main” infusion center. From what I could tell, most of the patients were fighting cancer.  

I thought to myself, “they are fighting a much harder battle than me, I’m just here for Rheumatoid Arthritis”. And then it hit me. Everyone’s battle, including mine, is important. Just because I’m injecting my small dose of chemotherapy at home and getting a biologic infusion, doesn’t mean that the infusion process is any less scary or intimidating for me. My disease will never be in remission. I have permanent damage to my joints and bones as a result of Rheumatoid Arthritis and no amount of chemotherapy is going to fix that. I could very likely be sitting in that infusion chair, every 8 weeks, for the rest of my life.

So I’m going to try to keep things in perspective. When I see someone cry or flinch while getting a flu shot, I’m going to try to remember that just because I have given myself shots for 28 years, not everyone else has. 

 

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Uncategorized

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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Favorite Things Rheumatoid Arthritis

Fay Farms Rejuvenation Review!

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“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. “

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If you’ve read my blog or followed me on Twitter for awhile, you’ll know that I’ll try anything to get rid of my pain. Even when my pain is relatively under control, I still find myself wandering the first aid/pain relief aisle at the grocery store. I’ve tried every spray, balm, patch that’s OTC and plenty of prescription products as well. So, I was skeptical when I received The Fay Farm‘s Rejuvenation lotion to try and alleviate my pain.

In short, I absolutely love this product. Let me tell you why. I received this lotion shortly before my knee surgery. I was in tremendous pain prior to my surgery from both my knee and almost every other joint due to a lack of my RA medications as I was trying to keep my immune system somewhat strong for the surgery. I was taking pain medications around the clock and still wasn’t getting relief. I initially tried a little of this lotion on my hands and noticed they felt better but was still skeptical because, as I mentioned, I was taking pain meds nonstop.

After the surgery, I started having sciatic nerve pain, which was brand new to me. My hip pain came back with a vengeance, I’m sure walking with crutches didn’t help keep it away. And this lotion helped! And by helped, I mean it took my pain away! I could rub it on my hip and literally within a few minutes (sometimes needing a repeat application for stronger relief) my pain was gone.

Now that my incisions have healed, I’ve used this lotion and again, it substantially reduces my pain on my post-operative knee. This lotion is the difference between me taking a prescription pain medication and not. It even relieves menstrual cramps (TMI I know…).

So what exactly is this magical lotion? The Fay Farm’s Rejuvenation Lotion is a blend of herbs and essential oils designed to relieve joint and muscle pain. Notes of vanilla from peru balsam essential oil complimented with a delicious top note of camphor makes for a mild, almost decadent aroma.  Made with organic ingredients: Purified water, hemp oil, grape seed oil, apricot kernel oil, emulsifying wax, stearic acid, argan oil, magnesium, white sesame oil, jojoba oil, essential oils, 200 mg. CBD oil, fennel, licorice, turmeric, valerian, gluconolactone and sodium benzoate (certified organic preservative).

The lotion has a thick consistency- thick enough to really be able to rub into problem areas but not too thick that you struggle to get it out of the bottle/pump. And you truly don’t need a ton to get relief. One pump usually is enough for each area (big areas, like a hip, might need two). I’ve been using this lotion almost daily for weeks and still have half a bottle remaining.

And guess what? The Fay Farm is offering my readers a 10% discount and free shipping (within the US) if you use the code “ATJAX” at checkout. What are you waiting for?! Click here to order your own and please let me know how it works for you.

 

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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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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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