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Anonymous asked: What would you say to someone who is struggling to get a diagnosis? My rheumatologist believes me but has no clue what is going on. This is my 7th year of joint pain, swelling, stiffness and fatigue and I'm really starting to struggle now. I see my Rheumy for the first time in 17 months in May (long story but I fell off their patient lists) and I'm already scared!

Hi Anonymous,

I am very sorry to hear of your struggles. I completely understand as it took me 14 years to get an initial diagnosis. 

DON’T STOP! That is my first advice. You have to keep pushing for the answers you need. Some doctors don’t realize how difficult it can be living in no man’s land with no diagnosis. Communicate that that is what you need, a name for your pain.

I hope your rheumatologist is still treating you? Some medications can be diagnostic. Meaning, if you respond to them then that can help lead you to a diagnosis. 

Also, do all the research you can ahead of time. If you read something that sounds like you, take that idea to your doctor. Create a written list (or list on your phone like I do), and pull it out so your doctor can see it. That way they know you have questions and you won’t forget anything. 

Don’t be scared. I know how ridiculous that is to say, because it is near to impossible! But stress (as I’m sure you know) greatly increases symptoms. 

I’m glad your rheumy believes you, but if you feel that you aren’t getting far enough or anywhere with them, then a second opinion is definitely reasonable. It won’t hurt to talk to another doctor if you have one in the area. One may see something in your history and symptoms that the others don’t.

Keep your head up, do your research, and remember the entire #rheum community has your back! 

Hugs and be well,

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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Anonymous asked: I am 55 and was diagnosed 15 years ago with RA and have yet to find a drug that my body agrees with, so I am on Prednisone daily. Can't stand it and neither can my bones, now have osteoporosis. Would like to know what meds that are working for you?

Hi Anonymous!

I am very sorry to hear that you have been struggling for so long. I too am currently on prednisone and working on tapering off of it. It’s the drug we love to hate! 

I am currently on my sixth biologic, as I tend to burn through them quickly. Due to the severity of my disease, my body seems to outsmart the meds after 1-2 years. 

I am doing fairly well at the moment, even making a bid towards remission and for that I feel blessed! I am currently taking weekly sub-cutaneous Orencia, weekly Methotrexate injections (the one medicine that has consistently helped me), and I recently added Arava about a month ago. 

This is just what works for me, everyone is so different and so are their diseases. I would recommend you continue doing your own research on available medications. It never hurts to ask, and you never know what will magically start helping.

I also treat heavily with diet and exercise. I have been vegan for a little over a year, and it has made a massive difference. I don’t eat processed foods, sugar, and rarely drink alcohol. If you’ve never done an elimination diet, I would recommend that to see if there are certain “trigger foods” that are increasing your pain and inflammation - again, everyone is different!

I wish you all the best. Be well,

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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Anonymous asked: Can you tell me what doctor treats your migraines? I would love to know the medications that you use for for preventative and abortive. Thank you for sharing your story. Thank you, V

Hi Anonymous!

I have Complex Migraines, so mine behave a little differently. They sometimes present with stroke-like symptoms, loss of eyesight, slurred speech, and weakness in my arm. I can’t take triptans any more, so I went through a lot of trial and error.

My neurologist treats with daily Verapamil, which is a heart medication, which helps stabilize the rapid heart rate I tend to get with my migraines. I also take daily Namenda, which is an Alzheimer’s medication, and UCLA (my hospital) led research on using is experimentally for migraines. It literally gave me my life back.

When I get migraines, I use Fioricet and Tramadol, and if they’re bad Percocet. 

For homeopathic options, my East/West doctor got me to start drinking teas. I drink chamomile, fresh mint and basil (if I have it), alone or all together. You can also use peppermint oil on your pressure points for pain. Two things I can’t live without are flax seed therapy wraps (my Mom developed these when my previous favorite was no longer available!), and a still point inducer which hits the perfect pressure point at the base of my skull. 

I’ve also found physical therapy on my neck, as well as massage to be very helpful since I have cervical spinal arthritis. 

I hope this helps, and be well!

Britt aka The Hurt Blogger

Posted on April 10 2014 with 2 notes

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I am very excited to announce that I will be writing for HealthCentral.com’s Rheumatoid Arthritis section! My first post went up today, and you can find it here

Take a look around the site, as they have wonderful stories from other patients who are not letting their disease rule their lives! Please feel free to leave comments on the site - and I’ll get back to you! 

Thanks! -Britt

"I crawled to my parents’ room, somehow understanding in this moment that everything had changed." 

Posted on March 12 2014 with 9 notes

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Complex Migraines: This is What it Feels Like

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A migraine is not just a bad headache. It’s an inability to move, an inability to lie still. It is a complete inability to function. Remaining still, I am trapped in my pain, trapped with swirling thoughts. How long can I endure this? Wrestling with the thoughts, I can not let them win, for as they do my heart rate increases, and the thumping intensifies in my head. The only option is to pass out. Reduce one’s self to a medically and sanity preserving trance. I imagine this to be a similar result Marie Laveau induced in her Voodoo ceremonies. Rendering me a human both awake and alert, yet detached from my own self - my own pain. If I’m lucky enough to escape away into this trance, I hope for the outside world not to bring me back. A buzzing text on my phone is enough to create both cognizance and utter pain in the same moment. The flash flood of pain pouring into my skull, necessitating the need to move - the very thing that will make it even worse. But with movement comes the chance at relief. A well stocked medicine drawer with prescribed options, and because those fail so many times out of ten, a well stocked alternative arsenal. Magnesium, electrolytes, peppermint oil, chamomile and mint teas, a still point inducer, ice packs, always ice packs. My freezer of ice packs rotating faster than a carnival, certain choices more comforting than others. I grab the one my Mom made, because she made it. Because it’s exactly what I need. Heavy, sumptuous, cool, calming, and enveloping. I tell my brain to tell my feet to walk back to bed. My feet lurch in a ridged pattern, one turned out, the other not bending in time. Hands thrust violently into walls to keep my fragile body from slamming into tables, the floor. I grasp my head, waiting for the momentary rush of symptoms to pass. The lightening storm in my skull, twisting both speech and eye site. Momentarily blind, I make it back to bed. I lie down to calm the worsened pain that standing caused. Stabbing pain settles in my eye sockets, my thumbs reflexively jab into pressure points. My eyes will be bruised tomorrow from the involuntary thrusts. There is both a freight train and eerie silence in my skull. The kind of silence that makes you wonder if YOU will ever return from this. Can not think about that now. Stress makes things worse. For now I think of my breath, the cool on my forehead. I focus on these and will myself into another trance, for next time I come to, the horror might be gone. A migraine is not just a bad headache, but a momentary destruction of your life. But, life is never sweeter than when it passes. And this, I remember when I am in the trenches.

Posted on January 23 2014 with 23 notes

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Fighting Together

Yesterday I heard that elusive word “Remission” roll off the tongue of my rheumatologist with the hopeful weighty thud it deserves. After twenty-one years of living with autoimmune arthritis, I somehow never give up hope that maybe my turn at remission is next.

24 hours later I awoke to Methotrexate side effects, fighting to keep down the previous night’s dinner for two reason: a) hugging the toilet every week is getting old and b) I invested some serious spoons in crafting that delicious dinner. Stay in me you will!

This is what GETTING to remission looks like. Hell, or any dream for that matter. It is fighting your body tooth and nail for the thing you want most.

It is deciding in your mind and your heart that the immediate options laid before you are not good enough, and you’re willing to do some crazy stuff to get there. Like willingly inject and ingest meds that make you pray to the porcelain gods.

Our chronic community of staunchly determined smiles keeps me motivated, but this does not mean my own smile is always strong.

I am tired, scratch that - ridiculously exhausted all. The. Time. As are you.

Having mastered the “grin-and-bear-it” face out of pure necessity, I guess I should not be surprised when I meet people and they question the level of my disease activity.

Fighting my disease, means fighting to put a smile on my face, everyday. It means finding the energy to bathe, to tweet, to laugh.

This path to remission is a battlefield strewn with needles, unreturned emails & voicemails, and inappropriate jokes.

Tomorrow, I will wake up and fight to take another step closer to Remission. I have the strength to try again tomorrow, because you’re here with me.

We are stronger together, and I thank you for that.

Be well,
Britt

Posted on December 11 2013 with 12 notes

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Plum Prairie Giveaway! Heat/Cold Therapy Wrap & Bath Soak (click here)

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A couple months ago my chronic brother and I were lamenting that we could no longer find our favorite heat/cold wraps to help with pain.

Secretly, my Mom began plotting and wanted to find a way to bring this much needed comfort back into our lives. In an effort to solve this problem, she decided she could help all of us spoonies and Plum Prairie was born!

She developed high quality organic Heat / Cold Therapy Wraps, with a soothing weight to envelope a sore joint, and comforting mild scents, while keeping costs low because frankly we all have enough medical bills!!

This was one of the biggest acts of love I have ever been shown, and I am excited to share a holiday giveaway!!
Head on over to her Facebook page and give it a “Like” to enter to win a medium size heat/cold therapy wrap in your favorite fabric and scent, and your choice of soothing bath soak!! Details are on the page!
Thank you Mom - for easing my pain, helping me sleep better, and being just crazy enough to help as many as you can along the way!

Posted on November 29 2013 with 5 notes

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I am going to climb Denali.

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At nineteen, I gazed through a telescope in the Eielson Visitors Center of Denali National Park in Alaska, unnaturally fixated on a mountain that gripped me at my very core.

A couple months prior my parents had asked what one thing I wanted to do in Alaska before my family moved away from the state.  Without hesitation, I said I wanted to go back to Denali – National Park, that is. It is a trip that would forever alter my late night thoughts and deepest desires.

Denali, also named Mt. McKinley, has a tendency towards privacy. Shrouding her self in clouds, it is a rare gift to see pieces of the mountain, let alone her entire 20,237 feet of towering beauty.

The one and only day I was visiting, happened to be the one and only day in the entire month of June 2004 that Denali decided to release the clouds, and offer visitors a near perfect view.

Standing in the visitors center with my Mom, I learned of the mountain’s history, yet felt incredibly anxious and boxed in. I escaped through the viewfinder of the telescope, staring at a mountain that seemed to be smirking at me.  I could feel the power it held, its frigid slopes swirling snow into the air with each passing gust of wind.  Its call was palpable. The silence of age old snow muted the world around me, until a teasing park ranger leaned in and said, “It’s a good day to summit.”

Over. Denali had me.

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Photo: My Dad took this for me two days ago, as he awoke on a flight just in time to see Denali hiding in clouds. (Thanks Dad!)

I returned to college quietly conveying to a few confidants what had happened to me. It wasn’t an idea, or merely a goal.  It was a calling.  These same friends who shared my love of getting lost in nature – both physically and mentally – agreed to climb it someday with me. (If you’re out there, the offer still stands. This is also an open offer… hint hint)

Not long there after, Arthur (my autoimmune arthritis) had other plans. He systematically began invading my life, challenging my resolve, threatening my very ability to even graduate from college.  Somewhere along the way I began to let him win.

Winning the fight against Arthur means waking up every single day and deciding to be the victor.

I have been told, like many and maybe sadly all of you, to do the safe thing, to submit to my arthritis and let it call the shots.  As Helen Keller said, “Avoiding danger is no safer in the long run than outright exposure.  Life is either a daring adventure or nothing at all.”

Eight months ago, in one of my lowest moments of this disease, I decided to become a runner again.  Something I was told was physically impossible and/or not medically in my best interest. Two 5K medals and one flabbergasted rheumatologist later, I am stronger than ever and challenging the possible.  My body is healing.  Arthur is submitting, not me.

My Mother always says “have faith in that little body,” something Angela Durazo echoed recently when we got a chance to chat about what is actually achievable living with this disease, as opposed to what should be achievable.  I left that dinner with her feeling like nothing could stop me. 

Granted, that doesn’t mean any of this is or will be easy – quite the opposite.  This is about knowing what I want out of life, and getting creative about making it happen.

I’ve quietly begun training for my dream and felt guilty about over-sharing when so many struggle just to walk, to hold the ones they love, to laugh.  But the truth is, I’ve been there, and I am telling you that actively fighting for your goals as a person and not a patient will do more for your health and well being than you know.

During a recent visit with my good friend The Afternoon Napper where I outlined my plan, she said, “You are challenging what I thought was possible.”  That is exactly my goal; for myself, for doctors, for my fellow patient warriors.

On my first real training hike last weekend, a test to see where I stood, in waning sunlight, I plowed through three miles like it was nothing.  I could not have done that five months ago. 

Towards the end of the hike, as I led the charge up a steep hill, my hubby with fear and admiration said, “Whoa! Are you sure this is a good idea?”

I paused and simply said, “We won’t know unless I try.”

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In the coming months as I train for a goal that is at least a couple years out, I will be setting up a fundraising platform to help get me to Denali.  I am doing this for me, to change perceptions of “arthritis”, and to fight for awareness for us all.

Whatever it is you want to do, find a way — where there is a will, there’s a way. As my friend Rachelle said, “We all have our Denalis living with this crappy disease.” Hers is having a second baby. Much love and gratitude for all of your support. -Britt

Posted on November 14 2013 with 9 notes

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World Arthritis Day - Why My Mom Wore Blue

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Two years ago my mother wrote a beautiful post in support of all of us living with #rheum. I cry every time I read it, because I am unbelievably fortunate to have a mother and family that GETS IT. I know that is rare. This is now the only way I know how to celebrate this day, to celebrate our strengths and courage, by sharing her words.

My Mother wrote this in support of me, but two years later she is now dealing with her own autoimmune arthritis demons. I share this again to say, I am here for you Mom, it’s my turn to understand. You’re afraid that you complain too much, when it is just the opposite. It is you and our family that have defined the words Strength - Courage - Love.  

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As a child I feared and maybe swore, like all other children, that I would not become my mother. I know now that I will be lucky to selflessly exhibit love and caring the way she does, to keep my foot firm and throw elbows when needed, to know when it is okay to cry, and when it is best to laugh and cuss for the soul’s sake.

I love my family dearly, and I wouldn’t be who I am without them. Thank you Mom & Dad, Lil Bubbers, my dear Hubby, his family that has welcomed me with open arms, and all those friends that have defined what it truly means to be family.

To my entire chronic and #rheum community - here’s a toast to wearing blue today, because someday it will all be a distant memory why we had to in the first place. 

**To read my mother’s original post for World Arthritis Day, click here.

Posted on October 12 2013 with 13 notes

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Mind Over Matter

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This is not the post I had planned to write today. Today I planned on basking in the glow of completing my first 5k after 5 months of training, and being told 2.5 years ago that I’d never run again. I planned to share my determination and mind over matter attitude with all of you, in hopes that I could encourage a few of you to also shun your doctor’s “nevers”. 

Instead, I am nursing a broken heart and neurological stress migraine. A friend of mine, Ryan Horn**, who has recently struggled with mental health issues went missing four days ago.  Conversations around his disappearance have gone from fear to heart break to downright angry. 

But just as I can not change the way my body functions due to my disease, he can not change the way his mind functions due to bipolar disease. When a person is sick, you can not be angry with them, it is out of their control.

As I awoke yesterday to the pre-dawn black, I had every excuse in the book to forfeit my spot in the run. I had a terrible migraine, I’ve been flaring for three weeks, and my heart is broken.  With a few encouraging words from my hubby, those soon became every reason in the book to do the run.

When you let the disease steal moments from your life, that’s when it wins. Would my migraine and joints hurt on the course? Yes. But they’d also hurt if I stayed in bed.

Icing my head the whole way there, I continued to doubt myself, right through the first 200 meters of the race - wanting to puke. As the morning light streamed over the Pacific ocean, clarity and calm came over me. I wasn’t just running for myself, I was running for every one of you, I was running for Ryan, I was running because right now I’m healthy (sort of) enough to.

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I felt no pain on the course, I wasn’t winded in the least bit, and I finished incredibly strong. When you find greater meaning in the little things, it can be a powerful motivator to move past the hurt - both physical and mental.

**If you live in the Portland, OR area and would be willing to print a flier and put it in your car, or join the search and rescue efforts, please like the MISSING PERSON - Ryan Horn Facebook page, and get more information. Thank you in advance.

Please remember to donate to the Arthritis National Research Foundation whom I am running for through Racing For a Cure!

Posted on September 1 2013 with 12 notes

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