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Rheumatoid Arthritis

The options are: sick or stiff?

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A little background on my RA journey- I was diagnosed in January of 2012, after several months of debilitating symptoms (like having to go down the stairs on my butt, not being able to straighten my arm).

My rheumatologist started me on methotrexate and after six months with no change, we added Humira.

Humira was amazing. I had so much energy, I could walk, and after almost a year, I could finally bend my arm. I am quite positive I was right on the cusp of remission.

Fast forward nine months. A seemingly harmless cough morphed into a nasty chest infection that took months to clear with various concoctions of antibiotics. I ended up with a permanent diagnosis of asthma.

Since my illness in 2013, I tried Orenica. I tried Enbrel. Nothing. I convinced my rheumatologist to please let me try Humira again. I did and instantly got a fungal infection, plus a sinus infection. I even had sinus surgery- desperate to get back what Humira once gave me. It was no use, I kept getting sick.

I moved on to Simponi Aria infusions in the fall of 2016 and gave them a solid nine months to work. Nothing.

It is now fall of 2017 and I’ve had my two loading doses of Rituxan. And guess what? Something! My fatigue got better right away, my stiffness is almost gone, and my pain is more manageable. But guess what?

As of today, I’m now sick for the second time in a month.

To say I’m discouraged would be a massive understatement. I have had Rheumatoid Arthritis for less than 6 years and I am already on my 5th biologic and just had my 5th surgery in June.

I feel that I have to pick between two evils: do I want to live in pain with limited mobility, while this disease attacks my organs? Or do I want to be able to bend my arm and walk down the stairs but I’ll be horribly ill and not strong enough to fight a serious infection?

In short, do I want to be stiff or sick?

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Rheumatoid Arthritis

The week I chose to live

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A few months ago I was invited to attend the ReAlTalk conference put on by Pfizer (they paid for my travel & time but that’s all, all opinions are mine). When I was invited, I knew that my heart and mind wanted to attend, but my body? That was another story.

I had and am still having a rough recovery from knee surgery and just daily life with Rheumatoid Arthritis. The thought of going to New York City was exciting yet terrifying. How much pain would I be in? Would my doctors even allow me to go? How would I travel with crutches?

Guess what? I went.

No, I didn’t through caution to the wind and say “forget you Arthritis”! Whether I like it or not, Arthritis always has a vote and if I ignore that, it will rig the election (hmm, let’s not talk about that). But I decided I would be as proactive as I could and use the tools I have- tons of KT tape, compression gear, my braces, ice, pain relief medications, and my crutches.

Between getting settled in my hotel room and our group dinner, I wore my compression socks, filled my ice bucket, and used the fantastic hotel pillows to elevate my legs. I drank a lot of water and made sure I had plenty of electrolyte replacement powder to add to my water bottle.

The next day, I opted to take the provided car to our meeting space (One World Trade, whaaaat?!) which was just a few blocks. I used instant ice packs during the meeting and accepted the offer of a footstool to keep my legs up. When returning to the hotel, I continued my RICE protocol (rest, ice, compression, elevation).

I didn’t always do as well as I could though. JFK is a gigantic airport (seriously, please learn from my experience). I knew this because I came through JFK for my flight in. I had a rough time making it from my gate to baggage claim on Tuesday so you would think I would. I thought I was prepared for Thursday. I wasn’t. I didn’t ask for a wheelchair. Why? I’m not really not sure. Getting to the end of the TSA line was rough and an agent actually lectured me about not getting a wheelchair. She was right. I spent a good 30 minutes standing with my crutches only to make it through security and have a LONG walk ahead of me to get to my gate. By the time I reached my gate, my ankles couldn’t be seen beneath the swelling, my hand ached from pushing through the crutch.

Back to my pride. Wheelchairs aren’t just sitting at the airport for show, they actually work and there are actual employees whose jobs are to push them. There is no reason I shouldn’t have asked for one and I’m disappointed that I didn’t. Please learn from me!

When my husband asked if I would go see Sturgill Simpson with him Friday night, I didn’t think about it, I chose to say yes. I found where the handicap parking was (that I didn’t even know existed) and spent the day doing the RICE thing. I had an amazing time and know how much it meant to my husband to have me with him.

Today, I’m not going to lie, I could be better, physically. But mentally, emotionally, I’m fulfilled. I’m happy. I worked, I traveled, I hugged, I cried, I laughed. I lived.

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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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Hope Rheumatoid Arthritis

I am not my burden

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Steve Rosenfield joined fellow Rheumatoid Arthritis advocates at our Joint Decisions Empowerment Summit in  Philadelphia almost two weeks ago. Simply put, the What I Be Project by Steve Rosenfield is a “photo project which focuses on building security through insecurities”. If you haven’t heard of this project before, do me a favor and click on the link- it’s an amazing idea.

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“I am not my burden”

My biggest insecurity? Asking for help. Accepting help. Feeling deserving of help. My diseases are a burden to myself and to everyone around me- family, friends, coworkers. They are a financial, emotional, physical drain.

My medications are so expensive, why should I feel that it’s ok to spend extra money on getting my hair done or buying lunch? I don’t deserve “treats” because I am a financial drain on my family. 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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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

It Must Be

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Growing up with Type 1 Diabetes, I was always aware of how I felt and if those feelings were due to my diabetes. Did I feel dizzy? Thirsty? Tired? Confused? These could all be easily attributed to a low or high blood sugar. Once diagnosed with Rheumatoid Arthritis, I added more physical feelings that I could attribute to my disease. Pain, stiffness, muscle aches, popping, cracking, etc. I am constantly putting those feelings into a bucket- the diabetes bucket and the RA bucket. Occasionally there is the “normal human” bucket where a cold, for example, might fall but even the normal bucket spills over into the disease buckets.

what-are-the-symptoms-of-ebola-because-i-am-pretty-sure-i-have-some-of-them-like-this-itchy-index-finger-f72f0

Being a parent to children who currently don’t have any major health issues when I do, can add a strong element of fear to my life. I question everything- “Didn’t he just go to the bathroom twenty minutes ago?” Must be diabetes. “Her knee keeps hurting, yet nothing happened to it.” Must be arthritis. “She keeps sleeping in on the weekend.” “His hands are really achy today.”

No, I don’t spend all of my time analyzing their every move or every sip of water they take. But these little thoughts pop into my head from time to time. Is there anything I can do to prevent one or both of them from developing an autoimmune disease? No. So why harp on it? Because I don’t want them to suffer. Of course I don’t want them to suffer having a disease, that’s obvious. But what I mean is that I don’t want them to suffer through waiting for a diagnosis. With Type 1, my parents were repeatedly told that I had a virus, to let it go. My father, a type 1 diabetic himself, eventually had enough and tested my blood sugar at home. I was immediately hospitalized. With Rheumatoid Arthritis, I spent months going to multiple doctors, telling them something was wrong, only to be told that I had tennis elbow and was favoring my joint. It took me not being able to walk anymore for someone to take me seriously and run a battery of tests. I don’t want my children, or anyone, to experience that fear, that unnecessary pain or stress on their body.

So if I can’t control who will get which disease, what can I do? I can advocate and educate. I can share my diagnosis stories, my disease symptoms, with anyone and everyone. I can share what I’ve been through and what I’ve learned with parents, doctors, friends, family, strangers. I can empower my own children to research their concerns and know that every question they have is important.

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Rheumatoid Arthritis

Opiates give me time

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Yesterday, the Centers for Disease Control and Prevention released these guidelines in regards to prescription painkillers. The guidelines encourage physicians to only prescribe opiates to cancer patients, those that are terminally ill, or those in acute pain.

As a patient living with Chronic Pain from Rheumatoid Arthritis, I’m disappointed. The guidelines are intended to reduce addiction and death rates related to opioid use. I understand the risk of addiction and death but as a patient, what are the proposed solutions for me?

Here are the CDC’s Guidelines for Patients:

img_2661.jpgI’ll use myself as an example to address the options above:

  • I have seropositive Rheumatoid Arthritis- in short, there is no doubt about my diagnosis.
  • Imaging tests- multiple x-rays and MRIs show permanent damage to my elbows, knees, hands, and feet.
  • I honestly have not tried Cognitive behavioral therapy- I am open to it but would need to find someone who accepts my insurance.
  • Acetaminophen on its own doesn’t touch my pain, moderate doses of ibuprofen do help with pain during the day.
    • As a side note- I was taking 600-800mg of ibuprofen 3 times a day with pretty good results during the day but needing some extra relief in the evening (not to mention the burning in my stomach…)
      • I also have Type 1 Diabetes and finally asked my pain management doctor and endocrinologist if ibuprofen was an appropriate long term solution for me. Their answer? No. Why? Kidney disease. Ibuprofen puts additional stress on my kidneys. I still use it occasionally but not regularly.
  • I have gone to physical therapy multiple times- I’m currently going to work on my knee and hip pain. I exercise 6 days a week at the gym. I average 11,000 steps taken a day.
  • I take Cymbalta which helps with my anxiety and helps decrease my overall fibromyalgia pain.
  • I have had multiple steroid injections in my elbow, foot, and knee. As recent as last month.

I doubt anyone working on these guidelines for the CDC knows what it’s like to be up all night crying in pain. What it’s like to experience such intense pain that it makes you vomit. And then to try to go to work the next morning and care for your family, after being up all night in pain with no relief.

Here is what opiate medications help me do:

  • Be a present wife and mother. I’m not in bed all day. I’m not crying all night. I’m at my son’s basketball games and shopping with my daughter.
  • Work full-time. Sure I have to make accommodations for my illness, opioids don’t make everything perfect.
  • Keep my blood sugars in control. My blood sugar is, unfortunately, affected by much more than food. Pain and stress cause it to rise dramatically, so much so that my basal rates overnight are higher for when my pain is typically at its worst.
  • And most importantly- opiates let me have a good chunk of my life back. Time that would be spent suffering in pain. Time that is priceless to me.

How do opiates help you?

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2,016 Miles in 2016 Rheumatoid Arthritis

Motion is Lotion!

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By now I’m sure you’ve seen my daily Fitbit stats postings on Instagram, Twitter, and/or Facebook. They look a little something like this one from 2/29:

Every time I share these numbers, someone asks how I manage to move while in so much pain from Rheumatoid Arthritis. Aren’t I afraid I’ll be in more pain? Aren’t I tired? I made a commitment to myself this year to move for 2,016 miles in 2,016. Seems crazy, right? (See this post for an explanation). Do I go to the gym for hours? No!

First step- I don’t leave the house in the morning under 1,000 steps. I march in place while I brush my teeth, dry my hair, etc. It’s important for me to move because my commute to work is at least 45 minutes. Sitting still for that long makes my joints angry so it’s helpful to get some movement in first thing.

Next- I have step goals throughout the day.


This is on a cabinet on my office. Confession, I rarely leave work at 7,500. More like 6,500. I have a pretty sedentary job so I make sure I move all day. I asked for a headset for my office phone so I can pace around on long calls. I jog in my office for a few minutes each hour.
Simply moving your joints around throughout the day is so important. It truly reduces stiffness.

How do you keep yourself moving throughout the day? I’d love some tips!

 

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Rheumatoid Arthritis Type 1 Diabetes

Get used to it

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It’s hard to pinpoint when I got used to being a diabetic. I’ve had this disease for 27 years now and I’ve accepted it as part of who I am. Does it bother me if my pump looks funny in my clothes? Sometimes. Do I enjoy high or low blood sugars? Nope, not one bit. But I’m used to it. I’m used to the fact that eating a box of raisins today may not change my blood sugar but tomorrow it will. I’m used to the unpredictability of Type 1 Diabetes and I’ve accepted it. 

What I am not used to is my Rheumatoid Arthritis, but I think I’m getting there. When I was diagnosed three years ago, I was a mess. Fast forward 6-9 months later, thanks to Humira and methotrexate, I was basically in remission (or how I imagine it to be). I very quickly got used to less pain, more energy, and feeling more like myself. 

Fast forward a few months from there..I got sick and taken off of my miracle meds. I’ve been fighting since. But this time, I know my sense of remission will be different. My doctor, and various imaging and tests, has confirmed that I have permanent damage to my elbow, knee, hands, and feet. This was confirmed prior to spending nine months on Orencia with things getting worse. Permanent. Permanent damage. Permanent stiffness. Permanent pain. 

Up until this week, I viewed a lot of things as bandaids. I would often say “once my biologic works, I won’t need these compression gloves/knee braces/elbow supports”. “Once my biologic works, I won’t have trouble sleeping or need pain meds anymore.”

The goal of my RA medications is to stop or at least slow down the progression of my disease..to reduce inflammation. They simply won’t change what’s already happened to my bones and joints. I’ve known this for awhile now but it never really sank in until yesterday. I caught myself telling my doctor that “as soon as my Enbrel started working, I’d be able to run, sleep well, and wouldn’t need any more pain medications”. As much as I would love for this to be true, I have to start being honest with myself and look for ways to improve my quality of life amongst the pain and fatigue. 

To start, I’m vowing to realize that exercising for a few minutes is better than nothing. Just because I can’t go for a long time like I used to, is no reason to stop trying. I am not going to put myself down and/or think about when the day will finally come that I feel great enough to exercise for hours. I’m going to do what I can, as often as I can, and leave it at that. I just have to get used to it

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