For those of you who do not know me, my name is Ashley Boynes. I am 26 years old and I live with rheumatoid arthritis, osteoarthritis, unresponsive Celiac disease, chronic daily migraines, adrenal insufficiency, osteopenia, general immunodeficiency, and food allergies. (In addition to a very “murky” fibromyalgia diagnosis, a history of Bell’s Palsy, and multiple complications from the aforementioned conditions.)
I started my Journey to Wellness in December of 2009, when David Martin, Lisa Mauti, and I were all colleagues together at the Western Pennsylvania Chapter of the Arthritis Foundation. At the time, I’d written a number of blogs that were on the “personal” side, and was never shy about sharing my feelings about living with chronic illness. I’d started to become a “poster child” of sorts for being a young adult living with rheumatoid arthritis and other chronic conditions. So, I decided to set out to share my personal journey – the good, the bad, and the ugly – in an open and honest online journal that I would share with the online arthritis community. After all, blogs started out as online journals and daily logs – so what better place to chronicle my experiences with arthritis and other invisible illnesses than a platform such as this?
I’m excited to join David and Lisa, “virtually”, as an appendix to the Mid Atlantic Region of the Arthritis Foundation. They have been an inspiration to me both personally and professionally, colleagues who have went above and beyond in their commitment to the cause and their support of people living with arthritis. They have understood my desire, my urge, and moreover, my NEED to tell my story about what it is really like to live with arthritis and other multiple chronic and life-altering conditions at such a young age, on not only physical, but also mental and emotional levels. They’ve understood how my personal mission has related to the mission of the Arthritis Foundation and the community that we serve. It is my pleasure to join them once again and to share with you all “my journey.” (You’ll also be able to view all of the archived entries, soon, too!)
So, here I am, setting out to share my story on a grander scale, and to reach as many people as possible – of all ages and demographics – who may be sharing the same experiences and emotions as I am on my “journey to wellness,” as I strive to find treatments that work for me, to live a pain-free and somewhat “normal” life, and to continue to live a healthful lifestyle of overall wellness in mind, body and spirit, and while promoting the mission of the Arthritis Foundation to prevent, control, and cure!
Before I continue, though, here is the necessary disclaimer….and it IS of importance. Please bear in mind that I am, by no means, a doctor or medical expert. I have said this time and again in past entries, and I will say it again: I am not endorsing or discouraging any treatment, or offering any type of medical advice. I’m simply setting out to share my personal experience, my individual situation that is unique to me, and I am inviting you all along for the ride! Always consult your doctor before making any changes to your treatment plan or trying anything new. I am telling MY personal story. After all, every person’s journey is different, everyone’s body and genetic/biologic makeup is unique, every person’s circumstances and disease are different, as are everyone’s paths in life. We could have the same illness and the same exact treatments and yet, somehow, respond totally differently. Or, I could choose to explore more alternative options than you would choose to do, and my doctor may agree with that, and yours may not – and that is fine. To each, their own! So please, keep in mind, that I am not endorsing anything, and that “my” views are NOT necessarily that of the Arthritis Foundation. Heck, they’re sometimes not even that of my doctor! So, always talk to your own! 🙂
As you will read, I will continue to be open and, most importantly, honest with you all in my trials and tribulations: after all, living with chronic illness and invisible disabilities isn’t always easy! But, one thing that you will find about me is that I ALWAYS strive to be positive! Sure, I have “mixed feelings” about living with arthritis (something that I’ve found to be, oddly, both a blessing and a curse) but I try to find the light in even the darkest of situations, and I refuse to let the disease “win!”
So please, join me as I continue my “journey to wellness” with the Mid Atlantic Region! I will laugh, I will cry, and I want you all here for the ride! I’m sure that many of you will relate to my journey and my struggles, and I encourage you to share your comments – after all, that’s the point! I want to hear YOUR stories, too! Feedback is what keeps me going!
When I last wrote, I was dealing with one of the worst Rheumatoid Arthritis flares of the last 16 years. It was starting to calm down a bit, but, not totally. In fact, it flared up so badly that, the day that I’d posted entry #19, I was unable to drive or wash my hair due to shoulder and hand pain and inflammation. I could barely open my mouth wide enough, due to pain and stiffness in my jaw, to eat or brush my teeth, and I was so miserable that sleeping was basically out of the question. It was a rough couple of weeks because I am unable to take NSAIDs due to my other meds, and GI problems, and I am also unable to take Prednisone or Hydrocortisone anymore, either, due to adrenal issues.
The last time that we met, I was going in to have my adrenal gland and cortisol levels tested again. A couple of months ago my cortisol levels were so low that they were – and this is no exaggeration – at near-fatal levels (undetectable at a level less than 1.) On July 9th, I was having an ACTH stimulation test done to try to determine whether or not my adrenal insufficiency was autoimmune (Addison’s) or steroid-induced (secondary.) It was determined that it was secondary, and that my levels were beginning to stabilize. While my levels were normal, they are at the very low end of normal. My endocrinologist felt that I am not completely “out of the water” yet and that someone whose level was as low was mine was is not deemed “safe” for steroid use. Therefore, I am not supposed to go back on Prednisone or Hydrocortisone unless it is an “emergency.” I’m not quite sure what constitutes an emergency, but, in my mind, the absolutely excruciating and disabling RA flare that I was having would have qualified. In my endocrinologist’s mine, apparently not.
Sometimes, it’s difficult as a patient, when doctors are pulling you in two different directions, who to listen to. Should I listen to my endocrinologist, who discourages steroid use, or my rheumatologist, who had prescribed it to me for the RA flare? Hmm.
I tried to go without, and, somehow, I made it through that flare without the drugs. TRUST ME when I say that it wasn’t easy. (I am sure that the people who were around me during this period can attest to the fact that I was neither pleasant nor independent at this point in time!)
Anyway, I also saw my orthopedic surgeon for my right knee recently. As most of you know, I’ve had two orthoscopic surgeries on it, to no avail. I also have tried the cortisone injections, which do absolutely nothing for me. My right knee has osteoarthritis, rheumatoid arthritis, bone spurs, calcium deposits, meniscal fragments, and an extremely narrowed joint space: it is basically bone-on-bone at this point. Even though I am only 26, the only option left is a total joint replacement. However, for whatever reason, both orthopedic surgeons that I have consulted with in the area are hesitant to do so “just yet” and want to “buy me some time.” One suggested hyralaunic acid therapy (chicken fat injections) but did say that it will probably need replaced in the next 1-2 years. Please bear in mind that my knee mechanically, physically locks at a 90-degree angle anywhere from 1-5 times per day (sometimes more, always at least once!) and has, on occasion, just “given out.” I would say that it needs done, ASAP. It is at the point now where I worry about driving, because it locks when it is bent, and that I have to worry about positioning it properly to sleep. It has become a huge factor as far as impacting my daily activities, so I am not quite sure why there is a hesitance on doing it, other than my age and, probably, cost. (To me, money is somehow always an issue, sadly, when it comes to healthcare. This is just an unfortunate reality of the world that we live in. It is no one’s fault – just the truth!)
On the GI front … I am now taking the Welchol for nausea that I mentioned in Entry #19, but have not yet noticed a difference. In August, I am to be tested for the fructose malabsorption tests and am hoping that I won’t have to cut out sugar completely in addition to my other dietary limitations and restrictions. Additionally, I will get all of my vitamin levels tested again soon to see how my absorption and nutrient levels are holding up with the Celiac disease. When I had gotten my Mayo Clinic work up in January, they suggested that I have this battery run again in 6 months, so, I am a little past-due.
Yesterday, I met with an ENT doctor to have my “lymph node” situation looked at. That was interesting. It was kind of a free-for-all there, because it turned out that I had more problems than expected! (Luckily, nothing too bad, thank goodness! However, I’m used to being ‘bombarded’ at doctor’s appointments!) The great news? My lymph nodes were fine yesterday.
The lymph adenitis, or, inflammation in my lymph nodes, that I was experiencing, and experience every so often, was more than likely simply an autoimmune reaction caused from the terrible rheumatoid arthritis flare that I was going through. The occasional swelling that I get in my glands would be from the arthritis or a general autoimmune reaction in my body. This was the worst RA flare that I’ve had since age 10 and the first time that it had attacked my lymph nodes this badly.
My new ENT specialist also believes that my chronic tinnitus (ringing in the ears) could be autoimmune in nature, too, and may actually be caused by neuropathy from the Celiac Disease. She said that the neuropathy likely caused my high register hearing loss and that those nerves are constantly “screaming out” hence the nonstop tinnitus. Another explanation would be Autoimmune Inner Ear Disorder which is also a form of neuropathy (which could also be caused from Celiac Disease) – but she will need to look at audiograms from the Mayo Clinic to confirm either diagnosis. This issue is neither here nor there, in my mind, though. The Mayo Clinic already told me that my tinnitus caused slight upper register hearing loss or vice versa and that it was probably from nerve damage and that there was nothing that could be done about it, and that was that. So, I accepted it and have moved on. Yes, it is very, very annoying. However, it is just an inconvenience, and I have other things to worry about! Her more detailed theories were interesting to hear, though, nonetheless!
The last ‘discovery’ made at the ENT was frustrating, though. Apparently, I have GERD very badly. I was taking Prilosec and Tagamet for awhile for nausea and allergies, but, I never get “heartburn” or other symptoms that I thought were typical of GERD. Additionally, the Mayo Clinic mentioned nothing about GERD in my last endoscopy, so, I thought I was fine. Apparently, I have it really badly, and may have to get tested for Barrett’s dysplasia. I have “blood red lines” going down the back of my esophagus and the muscle near the esophageal spinchter is swollen and inflammed (hence the reason I felt like I couldn’t swallow and went to the ER a couple of weeks ago.) This would also explain my chronic cough and wheezing (which I’d always attributed to allergies/seasonal asthma, Methotrexate use, etc.) and possibly my daily nausea. Celiac Disease patients have been shown to have a high prevalence of GERD and reflux esophagitis, as well as other gastrointestinal issues.
So … doing the math, I’ve had 7 doctor appointments in 2 weeks, one MRI with contrast, one Remicade infusion (my boyfriend came with me – what a lucky girl I am! He is so supportive, and I am so blessed!), one ER visit, one set of routine bloodwork, one ACTH stimulation test, a total of 3 IV’s, countless pills, one fiberoptic laryngoscopy and one X-ray.
But, guess what, folks? I also attended a friend’s beautiful wedding (though, my feet and knees hated me for DAYS after wearing heels – oops!) …and I’ve also had countless smiles, tons of laughs, some swimming on non-flare days, and lots of hugs from my boyfriend, friends, and family, and endless pug-kisses from my dog, Maggie. Not to mention, Taylor Lautner is filming a movie – and living – 5 minutes from my home. So, I’ve had a little fun scoping out that scene. (I’m not a stalker, I promise. But, who doesn’t enjoy a little “werewolf hunting” in their free time? Hehe!)
Additionally, this weekend, I leave for the beach, with my boyfriend, and my parents, where I hope to relax, de-stress, and soak up some sun! Did you know that the sun provides natural Vitamin D that is good for your bones? My trip should provide me with extra doses of sunshine, smiles, and wellness, and what better than a beach trip to help me in my journey!
As always, we must take the good with the bad. What are you doing to balance out YOUR life? I’d love to hear if you’re going through – or have went through – any similar experiences to me! Please, leave a comment! I love to hear your stories, too!
Thanks for reading, and I hope that you’ll continue to walk with me on my journey! Let’s move together on OUR journeys to wellness!
I can so relate to most everything you are talking about. I take comfort in following your journey, knowing another understands what I go through on a daily basis. Thank you so much for continuing to share your story Ashley, it helps so many. As for my balance that was the hardest thing for me to adjust too , not over doing it on good days and not under doing on bad days. Thanks to Enbrel and finally finding my personal balance I do well on most days. I stay positive and never lose sight of my dreams.
i am so impressed with your struggles, your humor, and your willingness to share your story. i’m glad you’re getting some time for r and r with those that care about you too.
i would love it if you would visit my blog at http://www.the-first-step.com – your voice needs to be heard and i’d be honored to share my work with you. my passion is helping people make informed choices about their healthcare. it sounds like you’re doing your very best to integrate a lot of different information about your conditions.
it’s so important to go to your appointments with factual knowledge, concise information and prepared. i sense you do that – you can download my free appointment prep form to help you remember everything. i want you and your providers to speak the same language.
Thanks for sharing your journey with us.As an RA survivor for the last 20 years I relate to your journey in so many ways.One lesson I have learnt is that you have to educate yourself about RA ,the medication and the side effects.No two people will respond the same way to a particular treatment.For me a change in my eating style has helped tremendously as I have eliminated sugar and red meat .
Sharing your journey will allow others to do so as well.
Wishing you all the best!!
I was just googling and came across your blog; I haven’t read it all in detail yet but found it so scarily similar to my own background that I had to leave a wee message 🙂
I’m 29 was diagnosed with RA when I was just 2 years old, and also have Coeliac Disease, Osteopenia, and a few other auto immunes issues, I’m also a writer – a journalist 🙂 When I was 18 I had both hips and both knees replaced, I was the youngest person in New Zealand to have this done for RA, and doctors were hesitant to do it, but did because it was bone on bone and that was making walking near impossible. So glad they did as it’s made a huge difference.
Hope you’re doing well. Look forward to reading the rest of your blog properly 🙂
– Bron 🙂