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Rheumatoid Arthritis

Starting Story

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Today is day one of the 2nd annual RA Blog Week! Here is today’s prompt:

Starting stories – tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong? Or maybe you were having a break from a biologic medication and you decided to give it another try? 

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I often think back to how my diagnosis of Rheumatoid Arthritis came to be and I wonder how much differently things could have gone.

In September of 2011, Labor Day weekend to be exact, my husband and I took a trip to Dallas to visit friends for a few days. When we arrived, I noticed that my left elbow hurt and just felt a little weaker than usual. I attributed it to hauling my bag through the airport, took a few ibuprofen tablets, and tried to forget about it. When we returned to Baltimore the following week, I went over to Patient First just to have someone take a look at it. They did an xray and diagnosed me with tennis elbow. They encouraged me to get a brace and told me I’d be fine in a few weeks.

The next day, the nurse called from Patient First to tell me that a radiologist had reviewed my xray and saw that my synovial membrane was inflamed. She said I should follow-up with my primary care doctor that week. I did and my doctor agreed that it was tennis elbow, told me to make sure I got a brace and to let them know if things didn’t improve.

By the beginning of October, my elbow was much worse. It was so stiff and swollen that I couldn’t use a drive thru ATM. I couldn’t bend it to reach my face or to put a necklace on. I was worried. I decided to go to an orthopedist who gave me a cortisone injection and sent me on my way. I was seen again two weeks later and was told by the doctor that I was “favoring” my elbow and that it was fine.

By the beginning of November, things took a big turn. I could no longer walk down the stairs in my house in the morning. I would literally sit on my butt and scoot down. My elbow was more stiff and my fingers and wrists had joined the party. My neck was so stiff that I couldn’t completely turn it to either side. I fell asleep during a hair cut. I was in trouble and something was really, really wrong.

I went back to my PCP and in between sobs, demanded tests. My PCP could tell something was wrong and ordered a battery of blood work- Gout, Lyme, Rheumatoid Arthritis, Lupus…you name it and I was also given heavy painkillers. I got a call later in the week to say that my Rheumatoid Factor had come back positive and my inflammation levels were very high. My doctor didn’t want to diagnose me with Rheumatoid Arthritis but encouraged me to get an appointment with a Rheumatologist as soon as possible.

By now it was mid-November. Every Rheumatologist I called, wanted to review my records before deciding to even see me. I called my insurance company. They tried to help but were unsuccessful. I called my PCP back. She was very honest and said that although she couldn’t instruct me to do so, she really encouraged me to go to the emergency room. This was the Wednesday before Thanksgiving. I took off work and went to the ER alone. A fellow came into see me and said she was sure they were going to admit me. Luckily, the ER doctor who finally came to see me had a good relationship with a rheumatologist who happened to be doing rounds in the hospital at that time. He was able to secure me an appointment in December.

I wouldn’t formally be diagnosed with Rheumatoid Arthritis until January of 2012 and would start methotrexate at that time. I wouldn’t start my first biologic, Humira, until six months later. I think back to when Patient First noticed my synovial membrane was inflamed. If I had known, or my PCP had been more educated, would we have drawn labs then, or even a few weeks later when the swelling had intensified? If I had known that patients with moderate to severe RA do better with aggressive treatment early on, and I had started methotrexate and a biologic in January, would I be better off than where I am now?

I don’t spend time harping on the what ifs, I can’t change anything for myself now. But I do share my story so I can change things for the next diagnosed patient. If you’re recently diagnosed, I encourage you to research your disease and treatments, don’t immediately go with what your doctor suggests. Be aggressive. Ask questions. This disease will be with you every minute of every day for the rest of your life. Do what you can to make let it have the smallest impact possible.

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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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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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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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