Ashley’s Journey to Wellness – Entry #7: My Mayo Clinic Update & Thoughts on “Complaining!” – Ashley Boynes, Community Development Director, WPA Chapter

As my “readers”, coworkers, friends, and family know, I spent last week at the Mayo Clinic in Rochester, Minnesota. I ended up having to stay a day longer than expected and while I was there, had many tests/procedures done and (luckily) many things ruled out, which was a blessing!

I decided to sum up my trip as succinctly & easily as humanly possible!

The hospital itself was BEAUTIFUL – more like a combo of a hotel + museum than a hospital. They had art from Andy Warhol (his “flowers” collection – Loved it!) and others, and artifacts from when they opened in the late 1800’s, as well as gorgeous and unique blown-glass chandeliers, plates from the White House, an old-fashioned “carriage” ambulance, etc. Notably, almost everyone in Minnesota – especially the hospital staff and hotel people – were extremely nice, accommodating, pleasant and helpful! It WAS really cold (high temps of 5 degrees, windchill factors of negative 27!) but it is quite neat because there are enclosed walkways connecting everything: hospital, mall, hotels, salons, restaurants, stores, etc.

Thankfully, while I was there, they ruled out: diabetes, thyroid/adrenal problems, diabetes. The neurologist also doesn’t think it is Multiple Sclerosis. While I am “at risk” for MS, and “on paper” have many symptoms, upon physical exam she was not impressed enough to want to do a spinal tap (lumbar puncture) especially since brain MRI from 6 months ago was normal. Yay! Also, my bloodwork did not indicate any malignancies, thank goodness! Lastly, my Rheumatoid Arthritis is showing as fairly under control from an inflammation standpoint – more in-control than it has been in years. I still do have pain (for instance, today = mega flare!) but, who knows, it could be from osteoarthritis or back problems or fibro or even from my Celiac Disease! (which is what I went to Mayo for in the first place.)

I got a few diagnoses, some of which I was already aware of, some of which I was not.  Nothing that I am extremely upset about; most are not a big deal and for that I am thankful. I have osteopenia (this I knew of) which is the precursor to osteoporosis and means low bone mass/low bone density. I am borderline Vitamin D deficient, as well (from the malabsorption part of Celiac, which all of my problems are related to) and need to stock up on Vitamin D, Calcium & Vitamin K. Luckily, I like the Viactiv chocolate vitamin chews, they are gluten-free, and, I do not have to go on another medication for this! That’s a plus! I have slight hearing loss in the upper register, accompanied by nonstop tinnitus (ringing in the ears) – no tumors or blockages show up on MRI & my auditory canal looks fine upon exam! More good news! The rest of my audiology exam was fine and so they think that the ringing/slight hearing loss is from Celiac damage, or maybe even my past bout with Bell’s Palsy, and nothing they can really do, it is not particularly treatable or curable – I could have the ringing forever, or it could stop tomorrow – the slight loss is permanent but is not too bad that it affects my life. I’ve had this for almost two years, and at most, this will be a slight annoyance that I will, in time, not even notice, most likely!   I have scoliosis, which means my spine is slightly curved, which I never knew….and also some sort of bump or bone fragment on my C4 Cervical Spine that I’ll need to get looked at (again, something I didn’t know about, but it could be contributing to some pain, my knee problems, sore neck, headaches, etc.)   Last but not least, I have a tiny cyst on my kidney but it is nothing at all to worry about according to doctors. Don’t know what it is from, but  I don’t really care, since it isn’t anything to worry about! It is just something to monitor again in a few years and is basically not a big deal.  Oh, and I was also diagnosed with chronic daily headaches and migraines, as well as slight neuropathy, all of which I already knew that I had. The neurologist at Mayo said she can’t say what caused/causes them but would guess they are Celiac-related, like everything else probably is. (It is the  main contributor to all of my health issues.)

My (third) upper endoscopy went quite well, it seems. As far as the surgeon could see “to the naked eye with the scope, everything looks ok…which is good! (In some past ones, there was visible intestinal damage.)  They tried to get aspirations of stomach fluid but there was not enough to take samples of . They did, however, manage to take 8+ biopsies.  While I was  at the Mayo Clinic, I got an X-Ray of my spine, Bone Density test, 16 vials of blood taken, CT of abdomen/pelvis, and an upper endoscopy with 8 or 9 biopsies. I also had consults with gastroenterology, endocrinology, rheumatology, and neurology docs and gave some of my blood to be part of a Mayo Clinic Celiac Study. One test that they sent out may not be back for a month. This test was for autoimmune enteropathy.  They are also looking for amyloidosis and Collagenous Sprue &  true Refractory Celiac but since my endoscopy looked OK they do not think that it is either of these, and I hope not b/c these are more dangerous than regular Celiac, but like anything I will get through whatever it turns out to be!

I have to wait til all tests are back to get a true plan of treatment. For now, I am sticking with all of my meds/supplements and infusions, etc. along with the gluten-free diet, of course…all the while staying positive and motivated, and grateful/humble as always. Also, I am starting chiropractic treatments again. I recently joined a gym and hope to do more yoga, and am trying to eat very healthily as I’d mentioned in past blogs. (For instance, my dinner last night was spaghetti squash & split pea soup….yum! I’ve really limited sugar & dairy intake as well and try to eat organic when possible and also limit carbs….well…aside from on the weekend! haha) So for now, I wait. It seems most or all of my problems are from the Celiac Disease. It is unknown how long I had this for, and therefore may have had it without knowing, and therefore not treating it. My arthritis meds probably masked the symptoms of the Celiac Disease which was good on a “comfort” & “quality of life” level but which wasn’t great b/c I didn’t know I had it and so the disease progressed. As many of you know, most people do not have all of these complications with Celiac Disease, in fact, it usually isn’t a big deal at all….so if you get this diagnosis, do not be scared! My case is….weird. (Also: just a tip: If an immediate family member has Celiac Disease, you are advised to be tested for it just to be sure! Many people have it WITHOUT presenting any symptoms!)

One good (GREAT) thing about the trip was that I got to eat a lot of GOOD YUMMY gluten-free foods & all the restaurants there have gluten-free menus and the food was amazing! (Raspberry creme brulee, pistachio gourmet gelato, cheese ravioli, pizza, all gluten-free! OK, so I didn’t follow my little diet plan, other than staying gluten-free, of course, while I was there b/c I had to fast a lot and so I felt that I owed it to myself haha! And I had to drink liquid Barium Sulfate one day, so that night I felt like I deserved to eat something fab!) I also hate flying and was quite anxious over that, but all of the flights went well! I had appointments most days from 7:40 in the morning, until 5pm or later in the afternoon. So, there was not much free time and this is something you should be prepared for if you ever have to go. In fact, we ended up having to stay longer than initially expected – but they really did try to cram EVERYTHING in there! (My Mom and I DID manage to get fabulous steam facials at the salon/spa in our hotel, AND enjoy the pool/jacuzzi each night, which was nice! My wonderful boyfriend also surprised me with a sweet card and flowers sent to the hotel, so I did have some very nice moments during the trip and “made the best of it!” Photo to the right is my glowing skin, no makeup – except lipgloss hehe – after facial….I was feeling refreshed and rejuvenated! I recommend that everyone get one at least once in life!)

I would recommend the Mayo Clinic to anyone who has unresolved health issues and who is able to be seen there. It is busy, but the hospital is easy to navigate, everyone is friendly, the doctors are very knowledgeable and seem to actually care, and there are many neat and historical things to check out while you are there….to make the trip a little more pleasant!

Being there put a lot of things in perspective. It really makes you think that things aren’t that bad, when you see cancer patients, and you also see all the things that they test you for – any of which could have came back positive, and, in that moment, could have been life-changing. So I’m thankful that I went. I’m thankful that they were able to rule things out, and I’m certain that my health has nowhere to go but in the direction of better! At least, I hope

I’m also very thankful to have this as a venue in which to share my story! My writing keeps me going! I try not to complain, so when I get to vent through writing and share ALL of the ups & downs, goods & bads, and the reality, simply stated, of every day life for myself and many others like me, it feels wonderful…especially when I see that I’m touching others’ lives! No one should have to suffer silently, and, ya know, we all have our “down” days, problems, and own ways of dealing with things…  but having an online community of support makes staying positive a little easier, for me at least! One thing that saddens me is that some people – usually those without health problems – think that ’stating the facts’ is complaining. If I tell someone that I have a headache, or “oh my arthritis is flaring today” – I don’t see that as complaining. Do you? If I have a “the world is out to get me” bitter attitude, or whine 24/7, or do the whole “woe is me” thing – that, on the other hand, is a totally different story. This is annoying, as are people who complain constantly about nothing, not knowing how good that they have it. (That’s a whole other blog in and of itself! Ha.) I complain about 1/10 … maybe even 1/100 … of how much I COULD be, and that’s more than some people do – I know many people are suffering and do not feel comfortable venting AT ALL and who hold their burdens inside. That isn’t fair to these folks. So I want to tell you ALL that if you are hurting – physically or otherwise – vent to me! I’m extending my hand; bring on the complaining and share your own story! I truly don’t mind (if you do actually have real reason to complain)….because, for me, sharing your own story is part of the journey, part of dealing with your struggles, and, I think, a part of healing! Also: look at it this way – if someone asked how you felt one day and you were feeling fabulous and healthy and happy and said so, there isn’t anything wrong with that. However, if your health is bad, and your answer is, “hangin’ in there” or “not so hot today” or something along those lines – that is seen as negative to some. Why? It’s just as true an answer as “fine” — and a heck of a lot more honest! What are your thoughts? Should we have to mask our truth? No one wants to be friends with a Negative Nancy or a Debbie Downer, but, the reality is that these things ARE *our* reality! This being said, you do not have to become cynical, bitter, or pessimistic all the time – that’ll get you nowhere fast….and we have to learn to keep on smiling & to “play through the pain!” You can still be nice and sweet to others, be happy and polite, and lead a wonderful and blessed life, but also still be honest and true to yourself and others about what you were going through. I think that it takes a strong person to be open and honest, and even when I have bad days I’m still utterly grateful for all of the good. So, I invite you all to share in my journey by sharing YOUR own stories, because, after all, one of my main purposes seems to be to let people know that no matter WHAT you are struggling with, health-wise or other, you are NOT alone!

Have you had an experience with Mayo Clinic, good or bad? Any questions for me about my trip/experience? Do any family members of yours have Celiac Disease? If you have questions about being tested or going gluten-free, let me know! Do you think that just talking about your health is complaining? After all, it is a huge part of our lives. Please share any stories, thoughts, questions, and comments. I hope that all of your treatment plans are working, and that you are all on the path to wellness with me! Thanks for reading and for your ongoing support! I love the feedback and comments!

Stay well,

~ Ashley Boynes

Community Development Director

Arthritis Foundation, Western PA Chapter

“Voted Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness – Come Along for the Ride!

Click here for Entry #2 in Ashley’s Journey to Wellness - It Could Always Be Worse

Click here for Entry #3 in Ashley’s Journey to Wellness – Being a “Patient” Patient

Click here for Entry #4 in Ashley’s Journey to Wellness – X-Rays & Holidays!

Click here for Entry #5 in Ashley’s Journey to Wellness – Nutrition, “Hair-Pain”, Dermatofibroma & a Fresh Start!

Click here for Entry #6 in Ashley’s Journey to Wellness – Insomnia & the Mayo Clinic

Also check out our other Rheum for Wellness blogs and be sure to leave a comment and share with friends! Recent entries include a celebrity guest blog with singer & American Idol contestant Justin Williams (a cancer survivor at age 27!), a piece on the importance of sleep, an entry on advocacy, volunteerism, and the 2010 Advocacy & Kids Summit, and more! Check them out! Don’t forget to check out our chapter webpage, too, for exciting updates at: http://westernpennsylvania.arthritis.org and our new Arthritis Radio episode with Congressman Tim Murphy here!

A true American Idol: Contestant Justin Williams Writes About Overcoming Adversity – by singer Justin Williams & Ashley Boynes, Community Development Director, WPA Chapter

I haven’t been one to watch every single season of American Idol. However, when I heard it was Simon’s last, and Ellen’s first (I love both of them!) I thought, why not? I used to love the show, and decided to “give it a whirl” for Season 9.

As I was watching, one of the contestants caught my eye for a special reason. Beyond talent and looks, Justin Williams’ storywas an inspirational one about overcoming adversity in the throes a health crisis as a youth. Yes, he made it through to Hollywood Week; but more importantly, he made it through Testicular Cancer.

Since we are trying to promote awareness that it isn’t only “old people” who are afflicted with chronic illnesses – ranging in severity from arthritis, to fibromyalgia, and, yes, even cancer  - I decided to go out on a limb and email him to see if he’d be interested in writing a guest “Rheum for Wellness” blog entry about staying positive while living with chronic health conditions, and on finding something to focus on, that makes you happy – something other than you health!

I am pleased to say that he happily obliged and was fabulous to work with. After a phone call and a couple of emails, we’ve compiled a story to share with you all. Please check out my interview with American Idol hopeful, Justin Williams. I am happy to say that I consider him a friend of mine, and a friend of our chapter’s. Don’t forget to leave comments – I am sure that he would appreciate the feedback, as we always do!

-Ashley Boynes

Community Development Director

Arthritis Foundation Western PA Chapter

“Voted Best Blogger in Pittsburgh”

A true American Idol – Contestant Justin Williams Writes About Overcoming Adversity:

JUSTIN’S STORY – IN HIS OWN WORDS:

*The views and opinions expressed from here are on out are solely that of the author and do not necessarily reflect those of the Arthritis Foundation of Western Pennsylvania.

1) Justin’s Personal Story: From Cancer to Music -

When I was 20 years old, I was serving a mission for my church in Madrid, Spain. I had never taken Spanish classes before and was quite nervous, but at the same time really excited to serve God’s children in another country. I had to go through a major 8-week training course to learn Spanish and how to carry on a conversation in the native tongue.  I was so excited and after 8 weeks of training even though I was not completely fluent, I felt excited and ready to do what God wanted me to do.  Although I was not prepared for what was in store for me about 5 months later.

One day, I was playing basketball with some fellow missionaries on our rest and relaxation day.  During the game I was injured which caused me to go to the doctor to get some tests done from the injury.  During the tests they found tumor markers in my blood that read that I had phase two of Testicular Cancer.

I was so shocked and it didn’t really hit me until I was on a plane home to Utah the next day. I would often ask the question why, when I was doing good things did something like this happen to me? Often when tragedy strikes or a shocking and humbling experience occurs, we ask the question “Why??”

I learned through that experience that through great trial comes great opportunity and God does not give us anything that we can’t handle. All experiences can lead to our growth and understanding what is in store for us.  It is humanly hard to understand at times and very difficult to maintain a positive attitude as well and fully understand why something so traumatic is happening. The true question that I realized I should be asking, “ well there must be a reason for all of this, so how can I use this to strengthen myself, my Faith as well as the lives of others around me” once I started looking at it in that light, God was able to give me peace and assurance that no matter what happened, it was all for a reason and that I had a choice to use this experience and grow from it or allow it to make me bitter.

I chose the better option and have grown tremendously because of that experience. After arriving home, I went through multiple surgeries to remove the tumors in my groin and stomach area, and then went through multiple chemo treatments.  I can honestly say that even though I was trying to maintain a positive spirit, it sure was never easy.  I know that through our experiences we can grow and learn in a positive way, but it is all by choice.  My favorite quote is “It’s not what happens to us that matters, its what we do about it that defines who we truly are”

2) Did you find that maintaining a positive attitude helped you deal with living with and coping with this severe chronic illness? How did you stay positive?

I truly believe that through positive thoughts and nurturing our spirits with positive things even though the situation may be tough, we can truly be comforted. Keeping faith can bring so much comfort to anyone going through a tough situation

3) Do you think that having music as an outlet helped you cope during this difficult time?

I think we should all find a passion that we enjoy and can help us get away from the world. Music has been a love of mine since I was a little boy.  Music is truly the universal language and can sooth the soul and mend a broken heart.  I used my music as a way to express my feelings and to release some of the pressure and pain I was feeling through my experiences.  I feel that when we have something we love, it is easy to turn to that for peace through the hard times.

4) Aside from traditional medical treatments, did diet/nutrition, or any other forms of more ‘alternative’ wellness or spiritual healing, homeopathic medicine, natural remedies, etc. play a role in your getting well?

I believe that God put herbs and plants on this earth for a reason, and there is still so much we don’t know.  I have increased my health tremendously by naturally taking care of my internal and external body with constant nutrition and alternative medicines like herbs and natural resources from the earth. I cannot begin to express how much my life and body has changed for the better by using the resources. I do take a product that I strongly believe in call Life Vantage that is absolutely amazing! Test after test has been done and it has been known to prevent major diseases and remove toxins and harmful things in our bodies.  I do promote this product and would personally recommend it to anyone.  The website is www.Lifesvantage.com/justinrwilliams. No matter what products you use, I would highly recommend getting on a routine of taking natural herbs and vitamins on a daily basis.  I take over 10 different alternative vitamins and herbs to increase my health on a daily basis.  If you have any questions or want to know more about my daily routine and diet, please feel free to contact me at justinsconcerts@gmail.com

5) When did you learn that you were cancer free? Do you think the whole experience made you a stronger person?

I found out I was cancer free after 7 years. I am now 27 years old and continue to make an extra effort to increase my health on a daily basis.  I feel the experience has helped me tremendously to realize what is truly most important in life. The flatteries, the money, the popularity, the clothes, the new age, whats in now, is all so un important when it comes to the long term realm of things.  When we leave this earth, the only things that will matter is what type of people we were, and how did we serve others along the way.

6) Did coping with a potentially terminal illness help shed light on your priority? Did dealing with cancer help you find the strength you needed to go after your dreams and pursue a career in music?

Having gone through such a difficult experience I truly did realize that this life is too short to waste time on unimportant things.  We have the ability to accomplish whatever it is we desire with the right effort and work, we can do great things. It’s just a matter of getting out there and making it happen.

7) What message do you have with young people  who are living with cancer OR suffering another type of chronic illness or negative situation on a daily basis?

My message to those out there going through tough times, is just remember how wonderful you are and that you are not alone. Remember that things happen for a reason and that through our experiences and the experiences of others, we can become stronger and better people.  Think about and if you can, work on your passions. Find something that you love and focus on it 100%. It will help ease the pain and get you through the most difficult moments. But most importantly always remember that you have someone watching over you and can find comfort in knowing that.

How do you stay inspired?

I stayed inspired by reading, and studying the thousands of stories out there of great people who overcame great challenges in life.  There are so many out there who have shared their story so that we may be lifted and motivated to keep on fighting and living every moment to the fullest.  Seek out and read those stories of others.

9) How do you manage to be able to NOT let your illness define you? Sometimes, it is hard to be known as an individual person rather than a “patient” or “sick person.”

Your own thoughts define you, not the thoughts of others!

Justin Williams Official Website : www.JustinWilliams.com

- Justin Williams

Singer/songwriter

American Idol Contestant

Cancer Survivor!

Check out Justin’s Blog at: http://www.justinwilliamstour.blogspot.com/

And be sure to Become a Fan of him on Facebook – http://www.facebook.com/pages/Justin-Williams/
A special thanks to Justin from the Arthritis Foundation of Western PA! We wish you the best in both your health AND your career!

Sleep: For Healing, Health and Wellness – Ashley Boynes, Community Development Director, Arthritis Foundation, WPA Chapter

FACT: People with rheumatoid arthritis often need over 10 hours of sleep a night, or eight hours a night and a two-hour nap during the day. (Source: Johns Hopkins)

We all know that sleep is important. It is drilled in our heads as adults that, like needing 7-8 glasses of water a day, we also need 7-8 hours of sleep per night. Many of us take sleep for granted, not realizing that not getting enough rest can be hugely detrimental to our health.

WHY is sleep important? For many reasons. For one, it is essential to our physical health – it is restorative and healing like no other act. It refreshes us on even the cellular level. As we sleep, especially in the deeper, REM stages, our body repairs itself. Muscles heal and the body rejuvenates itself from the wear and tear it takes on a daily basis. Not only is sleep relaxing and comforting, but, it also takes up a large part of our lives – 33%, to be exact.

Did you know that the average human being would sooner die from lack of sleep than lack of water? It’s true. Yet, so many of us do not give sleep a second thought unless we suffer insomnia (which, coincidentally, often comes along with arthritis, fibromyalgia, and other chronic pain and/or autoimmune illnesses.)

Lack of sleep can result in stress, difficulty concentrating, daytime fatigue, weight gain, and even skin problems. It also weakens our immune systems and can make people more susceptible to illness.

Exactly how MUCH sleep we each need on a nightly basis varies. Healthy adults are advised to get 7.5 hours of sleep per night. Rheumatoid Arthritis sufferers often need around 10 hours of sleep. Children often need more sleep than adults, and the elderly often need surprisingly less.

Unfortunately, sometimes conditions like arthritis can make sleep difficult. Fibromyalgia is especially a challenge, as some doctors think that its cause is failure for the fibro patient to reach the stage-4 REM restorative level of sleep. Some ways that you can make yourself sleep better include: investing in a “good” mattress and pillow, drinking chamomile tea before bed, getting in a routine of falling asleep and waking up at the same time each day – including weekends, getting exercise during the day, no caffeine at bedtime, no sugar at night, no late meals, a well-balanced diet, plenty of water, and even meditation.

Some people find that simple, subtle yoga moves and stretches before bed can relax the body; others find that a warm-bath with aromatherapy salts will do the trick. Of course, many people need to use a sleep aid, and others try sleep masks, ear plugs, and white-noise machines.

Another helpful hint: flip your mattress – or, have someone do it for you. It can make all the difference in the world!

If you are like me and occasionally have trouble falling asleep, try relaxing your mind, and doing deep breathing. If you are tired but simply cannot fall asleep, don’t force it. Go read a book, or listen to subtle music, catch up on laundry, or take a hot shower, until you find that you are ready to fall asleep. Sometimes, laying in bed while battling insomnia can actually intensify the problem.

Do not sacrifice your sleep for anything! It is vital to your overall well-being and is one of the most important components of wellness. I personally feel best when I have 10-12 hours of sleep. Some people need just 6 or 7. Many arthritis sufferers, studies say, fall in the category of needing 9-10 hours of sleep per night….or even more! Of course, a nap here and there may help, and if you are having a bad “flare-up” day, don’t forget to let your body rest! Although exercise and physical activity is vital for those suffering from one of the forms of arthritis, rest and relaxation are also essential to healing in chronic pain and autoimmune disorders. Fighting fatigue is one of the most difficult parts in living with rheumatoid arthritis and similar conditions. Sleep doesn’t have to be your enemy, it can be your friend — there’s no shame in taking a nap or allowing yourself to sleep in once in awhile.

Do keep in mind, however, that while some of us do need the extra sleep, for other people — especially people who are generally healthy — excessive sleep can CAUSE fatigue, daytime sleepiness, and even depression. So, the best thing is to figure out what is right for you, personally, and to be careful to not cut out sleep. It is as vital to our existence as food, air, and water, and it often gets neglected when the chaos of everyday life takes over.

Do not take sleep for granted! If you are not getting proper sleep, you may want to consult your doctor. 40 million Americans suffer from one type of sleep disorder or another, and many of them come along with other ailments.

So remember, don’t neglect to catch some  Zzz’s!

Thanks for reading, and please Comment! Have a great weekend….a good day…and, a good night’s sleep!

Stay healthy & be well,

– Ashley Boynes

Arthritis Foundation

Community Development Director

Western Pennsylvania Chapter

“Voted Best Blogger in Pittsburgh!”

Ashley’s Journey to Wellness – Entry #6 – Insomnia & the Mayo Clinic – Ashley Boynes, Community Development Director, WPA Chapter

January 19, 2010 –

Well, I cannot believe I’ve already posted 6 entries. Time really does fly by! Unfortunately, not much has changed since my first “Journey to Wellness” entry. But, alas, as I set out to do – I’m still going to continue to update – the good, the bad, and the ugly! (And the good news, is that I haven’t had the “hair pain” for awhile! Ha.) Also, please note, I do not set out to “complain” in my blogs – but to paint a very REAL picture of what it’s like – and while a positive attitude is key – and I do a decent job of maintaining one – it isn’t always rainbows & butterflies, so I feel it is important to talk about what it’s all really like…not just so I can vent personally, BUT, so that people out there going through THE SAME THINGS can relate!

Since I last wrote, I have seen both Dr. Gastro, and, Dr. Osteo, a new D.O. (who I will not be going back to.) I found out that my left knee is “ok” – a little osteoarthritis and some joint narrowing but it is an absolute peach compared to my (horrific) right knee (which I’m going to get a 2nd opinion on. Not a fan of a total joint replacement at age 26!) I also went for another Remicade infusion, battled bronchitis, and have been accepted as a patient at the Mayo Clinic in Rochester, Minnesota.

Dr. Gastro, my “Celiac Doctor” suggested that I be seen there. Although I “call” him my Celiac doc, he isn’t. The truth is that, there is not a single doctor in the area who does truly specialize in Celiac Disease. In fact, even on a national level, doctors who do so are very few and far between. (Hence, my Mayo Clinic trip.) Dr. Gastro is a gastroenterelogist, who DOES specialize in autoimmune gastroinestinal disorders, but unfortunately his emphasis lies on Chrons Disease and not Celiac. He admitted to me that, basically, he does not have a clue why I’m not doing any better, and that he does not really know what else to do to help me. I’d been on the waiting list at the Mayo Clinic, and he recommended that I should take an appointment there if I could get one. As luck would have it, my phone rang WHILE I was in his office – and then I got the message that Dr. Joe Murray at the Mayo Clinic Celiac Center looked over my case and wanted me to be evaluated at the Mayo Clinic. With the timing of it, it seemed like fate. I was blessed enough to have a friend offer me a free flight, my boyfriend did not hesitate to give his credit card for the hotel, and my Mom was able to take off work to come with me. So, I’m going!

I must admit – I’m nervous. For one, I hate flying. Mega anxiety-inducing! Secondly, I do not know what kinds of tests/procedures will be done or what they will be looking for, etc. But most of all, I’m scared that I’m going to go, and that I’m going to get the same “I don’t know what else we can do to help you” type answer that I have been getting for over a year-and-a-half now. That, to me, is my greatest worry and biggest concern. However, that being said, with their reputation, I’m hoping that is not what happens!

So that is my “big news.” The other doctor that I saw, a D.O. who I will call, “Dr. Osteo” – was basically a big waste of time. He mislead me to believe that he’d be doing some testing for food allergies/sensitivies/intolerances, etc. that would be covered by insurance. None if it is – the visit with HIM was covered. Basically, he just wanted me to get SAGE and Oncolab tests — independent labs that, while they may work, can be expensive. (And Oncolab tests for a substance called anti-malignin which there is not a lot of documented information about as far as validity, reliability, etc.) I drove almost 40 minutes to see him, and it was a big disappointment. Really, he should have been a salesman and not a doctor. THAT was a waste of time! I mean, if I had the money, why not, I’d get all of the tests done — but why pay for all of this when I have access to a great network of doctors and insurance-covered tests? Lol.

My Remicade infusion yesterday went well. I brought 2 books: “Who What Wear” and “Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife” but I ended up napping instead. It was the first time I was able to nap. This is probably because the entire last week, I averaged only 4 hours of sleep a night — some nights, less than that. I had a pretty bad case of bronchitis, so it could have been from one of the meds I was on for that, but none of them listed that as a potential side effect, so I’m not sure. I’m also on Prednisone, but, I take a very low dose, take it in mornings, and have taken it here and there for most of my adult life, and have NEVER had that as a symptom. It has been very weird – I’m exhausted, my body is tired, my mind is relaxed, and yet I simply CANNOT fall asleep. Hopefully, it is a thing of the past, though, as last night I felt okay. I do not think that the average person appreciates the value of a good night’s sleep, or, how lucky they are if they are able to fall asleep easily.

My ideal sleep would consist of me falling asleep in LESS THAN an hour (usually takes about an hour, approximately, partially because of nonstop tinnitus and often, headaches) and NOT getting up 3x to pee in the middle of the night, OR off-and-on ALL night from arthritis pain, a headache, or nausea, and I’d get about a full 10 hours. Ideally, I now need 12-14 hours of sleep to even feel SOMEWHAT rested. If I get 7 or 8 – which is normal for most healthy adults – I can barely function. I’ve tried sleeping less, sleeping more – I am always insanely tired. Not just “normal-person” tired….but, to-the-bone, practically to the point of tears some days, dragging, groggy, practically unable to think clearly let alone work out ,or work on my novel, type tired. So for people who sleep normally and who have normal amounts of energy — of you, I am jealous!  I admit it! I’ve said it once, and I’ll say it again – the lack of energy and fatigue/weakness associated with Rheumatoid Arthritis and other Autoimmune conditions is the HARDEST part for me. I have so many goals, so many things I want to achieve in a day’s time, or over the course of a year, over the course of my life, whatever — but yet so many things seem unreachable because even doing the bare minimum most days is almost far too much, physically. I hope that healthy and/or energetic people never take that for granted. Due to the frustration I feel at being 26 and feeling 90, I sometimes DO get down in the dumps (even though, yes, as many of you have pointed out – I DO try to be strong, and positive! Thanks guys!) I feel that in your 20’s you are“supposed” to be vibrant, thriving, active….not rundown, weak, drowsy, and sometimes exhausted to the point of feeling, “out-of-it.” That’s my big gripe! And so, my recent bout of insomnia didn’t help matters, much! (I just hope that Mayo Clinic can help me resolve my worst enemies: Fatigue & “Brain Fog”!)

That being said, I made the best of it. Insomnia aside, I was able to pretty much kick the bronchitis in a few days, only having to take one day off of work, and had a low-key but relaxing weekend: took in a couple of movies, went out to eat, went to the mall with a girlfriend, got my eyebrows threaded, enjoyed a family dinner. On Sunday evening, though, I started to feel drained – which was exacerbated by the pre-meds + Remicade yesterday, and, today, I’m having a “crash day.” Arthritis flare, stomach/Celiac symptoms — ahh, the joys of chronic autoimmune disease … always present…but not my friend! At this point, I’m trying to figure out if the joint pain I get is from the RA or the Celiac – but, I guess it doesn’t really matter, does it? Pain is pain!

I’ve been doing OK with my diet and have lost a couple of pounds. (I’ve also jokingly set up a If-I-Ever-Get-Off-Prednisone Liposuction Fund if any of you wish to donate! Hehehe…kidding…kind of…) For the past 2 weeks I’ve avoided Starbucks chai (except for the 1-per-week I’m allowing myself) and aside from being more lenient (“cheat days”) on weekends, I’ve been eating less junk food and more fruits, vegetables, protein, etc. At night, instead of popcorn, or tortilla chips, I’ll have some Clementines, a banana, or rice pudding. The hard part for me is eating many small meals a day to keep the metabolism regulated. I am prone to NOT eat all day, and then eat a larger dinner & some snacks at night — which, I know is a big “NO-NO!” So, I’ve been eating a banana every morning, making something for lunch if possible, and, if I do eat at night, making more healthful choices – Pecan Nut Thins, hummus, grapes, or just a hot cup of herbal tea. I think that everyone needs some flexibility here and there, so, I’m not making a huge deal out of it. For instance, obviously pop (or, for those of you who are opposed, “soda”) is not good, but, if my stomach is upset (i.e. RIGHT NOW) I’ll have some ginger ale to calm it down, no biggie. I drink Gatorade, because it helps when I’m feeling dehydrated which is often. Again, I know it isn’t the healthiest thing. But, I’ve been trying to drink LOTS more water, starting off every day with a full (tall!) glass of cold, filtered water. On Sunday, I had gluten-free pizza at my Nana’s birthday party, and so last night I was sure to eat fish & no night snacks other than some fruit. It’s all give-and-take, and I believe is all about moderation. For me, as long as I stick to being strictly gluten-free, my food choices can vary but I AM still trying to avoid dairy and sugar (it’s very hard!)  I think that once I start feeling a bit healthier, I may shed a few pounds, too.

I’ve decided that post-Mayo Clinic will be my “fresh start.” I’m hoping they’ll give me some answers and that it will be the beginning of the rest of my life! (I’m putting a lot of eggs into the proverbial Mayo basket, I know…) So I’ve set some goals upon my return. On my mall trip Sunday, I bought Julianne Hough’s “Cardio Ballroom” workout DVD and am looking to also buy the “Pussycat Dolls” workout DVD (I like dancing!)  I plan to take some adult (beginner) ballet or pilates classes when I return, and am still in the market for a treadmill. I’d like to get some new Wii Fit games, as well. Until my knee gets better and my energy levels return, I may have to focus on just walking, but, as much research shows, walking can be great exercise and hugely beneficial! (My dog enjoys it, too!) As I’d mentioned before, I also hope to start volunteering at Children’s Hospital of Pittsburgh (who just did some great things for the BRESMA orphanage rescue efforts – kudos to them!) once or twice a month. Working with chronically or terminally ill children will really put things into perspective.

If they can make it through, so can I, and so can you!

I’ll be sure to update you all next week from Minnesota.

Now — I see a “Microwave Buddy”, Methotrexate, and some comfy pillows in my future! The weather today is so NOT conduscive to having arthritis!

How are YOU all doing today? PLEASE share your thoughts, comments, and feedback! It’s been quite a journey! See below if you’ve missed any entries! (And also check out our very special PS, below!)

Be well,

– Ashley Boynes

Arthritis Foundation

Community Development Director

Western Pennsylvania Chapter

“Voted Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness – Come Along for the Ride!

Click here for Entry #2 in Ashley’s Journey to Wellness - It Could Always Be Worse

Click here for Entry #3 in Ashley’s Journey to Wellness – Being a “Patient” Patient

Click here for Entry #4 in Ashley’s Journey to Wellness – X-Rays & Holidays!

Click here for Entry #5 in Ashley’s Journey to Wellness – Nutrition, “Hair-Pain”, Dermatofibroma & a Fresh Start!

Also check out our other Rheum for Wellness blogs and be sure to leave a comment and share with friends!

PS: Best-selling and Award-Winning “Consequential Strangers” author (mentioned in my Journey to Wellness Entry #4) has mentioned Me, and the AFWPA, on her Official web site – A big THANK YOU to her! Check it out:

http://www.consequentialstrangers.com/2010/01/15/what-cs-taught-me/

Rheumatoid Arthritis vs. Other Types of Chronic Arthritis – and Being A Well-Informed Patient – Ashley Boynes, Community Development Director, WPA Chapter

Today, I attended an online seminar. The webcast was through UT Southwestern Medical Center and is part of a 9-part program on Managing Rheumatoid Arthritis in the Primary Care Setting. While it was mostly directed towards healthcare professionals, it did provide a lot of useful information to the “everyday” person such as myself and many of you arthritis sufferers.

Today’s session spoke on how to distinguish – as a doctor OR a patient – Rheumatoid Arthritis from other similar conditions such as other forms of “chronic polyarthritis” and Fibromyalgia

The interesting part about it is that even the guest rheumatologist on board admitted that there isn’t always a gold standard in diagnosing these diseases, especially Fibromyalgia.

However, there ARE some ways to be “almost” certain that it is RA that you have, and not one of the other types of arthritis (there ARE, mind you, over 117 forms of arthritis & related rheumatic disease!)

Some indicators of RA include: joint swelling for more than 12 weeks, synovial swelling in joints, and a positive rheumatoid factor in lab work. A doctor should not solely rely on labwork, though — they should always also conduct a physical examination and collect patient health history. This is because sometimes, even someone with Rheumtoid Arthritis could have a negative Rheumatoid Factor in their blood work.

The hallmark of RA, according to the physicians on the panel (which included Dr. Dorothy Sherwood and Dr. John Cush) is “chronicity” – is this a chronic condition? Also, they need to look at the distribution of the pain and which joints – and howmany – it is affecting.

Usually RA patients have it in more than one joint, often symetrically. In osteoarthritis, the hip, spine, and knee are often most affected; whereas in RA, the knee, ankle, and hands/fingers are more often affected. That being said, RA is multi-systemic (something that they didn’t mention in the webcast) and can even affect other organs – causing lung problems and headaches, as well as occasional skin issues.

Another difference, though, between OA and RA is that in OA often the swelling seems more “bony” while in RA it is the synovial tissue swelling up, and so is more “puffy.” Osteoarthritis is approximately 10x more common than RA, and, as we’ve mentioned before is the type more associated with old age, and “wear-and-tear.” As you probably know by now, RA is autoimmune in nature.

There are other diseases like Rheumatoid Arthritis that may need to be ruled out in your diagnosis. One is gout. Gout is usually more asymetric than RA and affects, most often, the feet, ankle, and hips. Instead of the “nodules” sometimes present in RA & OA, gout suffers may have stony deposits called tophi. Blood work for gout may show elevated uric acid. Another type of arthritis to rule out when getting an RA diagnosis is Psoriatic Arthritis. It is very “RA-like” in nature, ogliarticular, and usually presents itself with a skin rash. It, unlike Rheumatoid Arthritis, usually has a “negative” rheumatoid-factor in blood work. (Seronegative.) Gout is associated with episodic onset; RA is more of an aggressive and progressive disease; and Psoriatic is also progressive in nature.

Of course, there are many other chances for misdiagnoses or overlapping conditions with diseases such as Lupus, Sjogren’s Syndrome, Ankylosing Spondylitis, Multiple Sclerosis, and so on, but probably the most common illness that people have when they “think” they have RA is not osteoarthritis, surprisingly, but, Fibromyalgia.

Fibromyalgia, as we’ve discussed in the past, is a mystery disease of sorts. Some doctors don’t even like to recognize it as an actual disease. In this webcast, the doctors agreed that to fail to recognize it as a real disease and not to set out to treat it is to fail the patient. Doctors need to think of it as a disease if they are going to properly care for their patient. Fibromyalgia differs from Rheumatoid Arthritis in many ways; though many patients have both, and there are some shared symptoms. In fibromyalgia (also called “fibro” or “FMS”) the patient usually has widespread pain (hurting “all over”), as many as 18 specific “tender points” and – this is almost always – sleep problems/sleep disturbances.  Almost always when fibro is the only disease present, lab work will be normal. It, along with other serious maladies such as Multiple Sclerosis, is a “disease of exclusion.” This means, doctors may want to rule out most or all other possibilities before giving you a definitive fibromyalgia diagnosis. Many doctors now believe (as stated in this webcast) that fibromyalgia has to do with a heightened perception of pain and is actually a neurological condition. Other doctors believe it stems more from a sleep disorder. Regardless, like RA, there is no “cure” for Fibromyalgia but more treatment options are becoming available.

While all of this information is greatly useful, one comment in the webcast irked me, and, many of our loyal Twitter followers. One of the doctors stated that doctors “needed to keep those patients off the Internet.” Maybe it was not meant the way that it came out; but to some, it seemed harsh and ignorant. There are vast amounts of information online for patients to be able to educate themselves and also to find support in online communities (like ours!) where they can heal the emotional wounds invoked by living with chronic illness.

That being said, what I THINK was meant by the quote was that no one should ever “play doctor.” Also, some people tend to work themselves up when going nuts Googling their symptoms and then worrying about the possible conditions. There are so many illnesses out there, and since there IS such a wealth of information available at our fingertips, it can be scary. So, always trust in your healthcare professional and do not self-diagnose or play doctor. Only take medical advice from your physicians, specialists, and reputable sources. We always state that we are not giving medical advice and to always talk to you doctor, because although we provide useful information, NOTHING should replace the care of your physician and the medical community. We cannot and do not offer medical advice, we only provide you with unbiased information and resources for your information. You must still consult a doctor. Most people are aware of this, and use this type of information to be a better patient.

So, feel free to become an empowered and educated patient, and to find support and relief in the online world, but also remember that the virtual “blogosphere” should never replace “real-life” healthcare.

Hopefully, you’ve learned something today about distinguishing your RA from other conditions. If you suspect that you have it, definitely find a local rheumatologist and get checked out! Remember – blood work, physical exam, and patient history….the keys to success!

For more our past Rheum for Wellness Blog on What People Do Not Know About Rheumatoid Arthritis, click here.

For more our past Rheum for Wellness Blog on Fibromyalgia, click here.

For our past Rheum for Wellness blog on multiple illnesses & overlapping conditions/symptoms, click here.

As always – your comments are MORE THAN WELCOMED and very encouraged! Thanks for reading and feel free to share your story of how YOU ended up getting a diagnosis of Rheumatoid or any other type of Arthritis!

Stay tuned for a new Ashley’s Journey to Wellness Blog Entry soon, too!

Best,

– Ashley Boynes

Arthritis Foundation

Community Development Director

Western Pennsylvania Chapter

“Voted Best Blogger in Pittsburgh!”

Young Arthritis: Resources for Juvenile Arthritis & Young Adults Living with Arthritis & Related Disease – Ashley Boynes, Community Development Director, WPA Chapter

“THE AGE OF ARTHRITIS….”

What does arthritis look like?????

Is it wrinkled, gray, and crippled? Or – is it a child, a teenager, a ballet dancer, a professional athlete?

The truth is, it can be any of the above. Arthritis in its different forms can affect all ages and ethnicities.

I personally “don’t look sick” but at age 26 have multiple ongoing health problems, including Rheumatoid Arthritis that I’ve had since around the age of 10. Well-known NBA player Allan Iverson has recently been sidelined due to arthritis in his knee. We had an honoree for our Fall Walk, Deora, who was only 2 years old, and a Jingle Bell Run Honoree, Maddie, who was just 9 years of age. My grandmother has arthritis; but so does a friend of mine in her early 30’s. There is no set age when arthritis can strike, and the reality is, since there are so many different types, it can happen to just about anyone!

That being said, when it does happen to you — especially if you are a child or young adult — you may still feel like you ARE the only one. We’d like you to know that you are NOT alone!!

I cannot even begin to ESTIMATE how many times I’ve been told that I’m “too young for arthritis” — people absolutely stare at me in disbelief when I say that I have it. I’m sure many of you reading can relate! This frustration along with many other shared struggles & helpful hints can be accessed right at your fingertips, whether you are 10, 50, or 100 years old!

We’ve set up a Facebook Page for older teens and younger adults who live with arthritis. I know when I’m not feeling well, I don’t always feel like talking or socializing; but on the other hand, chronic diseases can be isolating, so it is important to build a community of support. So, we invite you to join our community, online.  Become a fan of “Rheum to Grow – For Teens & Young Adults with Arthritis & Related Disease!” on Facebook by clicking here. We hope that you’ll utilize this space as a networking opportunity. Organize your own meet-ups or happy hours; and share your struggles, trials, and tribulations with friends…who may start out “virtual” but who may also become very near and dear. We also encourage you to upload your photos – along with a  brief intro – to this page so that we can show the world, together, what arthritis  truly “looks like!”

Also,

If you are a child with Juvenile Arthritis or a JRA family/parent, you will be happy to know that we have an online social network available for kids to talk to other kids about living with arthritis. At www.kidsgetarthritistoo.ning.com children and teens with arthritis can share stories and photos as they make friends with others just like themselves. The site is moderated by staff members of the Arthritis Foundation, and we approve all memberships. There, kids can access our blog, Twitter, and YouTube channel – and most importantly, find support from others like them. Juvenile arthritis is the 6^th most common childhood disease, and we want young people with arthritis to know that YOU ARE NOT ALONE!

Be sure to learn more about the 2010 Arthritis Foundation Advocacy & Kids Summit – regardless of your age - here.

Keep on reading our Rheum for Wellness blogs for personal stories, news on upcoming events, and arthritis health and wellness information. Also do not forget to check out Arthritis Radio on podbean.com or iTunes for interesting information on Juvenile Arthritis and general health issues, as well as interviews with thriving “younger” people who live with arthritis, such as State Representative Jennifer Mann, pageant queen Shauna Rice, and author/chef Melinda Winner.

Below is a list of helpful links for the newly diagnosed “Young Arthritis Patient.”

(hey, use your discretion – everyone’s definition of “young” varies!!!)

Please browse through these sites and keep reading Rheum for Wellness for many more useful resources:

Rheum to Grow – A Facebook Page for Teens & Young Adults

Kids Get Arthritis Too – A Ning network so kids can talk to other kids with arthritis!

The Single Gal’s Guide to Arthritis – A hip, young look at life with RA

RA Guy – Rheumatoid Arthritis Guy is our favorite arthritis “Superhero!” – A useful blog from a charming young man, chock-full of arthritis info!

“RA Sucks But Life Still ROCKS!” – Check it out!

This blog is a funny, personal look at one young woman’s life with rheumatoid arthritis – Confessions of an RA Super….

Melinda Winner’s Arthritis Survivor Network on Facebook!

A blog with great RA updates: The “Living Rheum”

Occupational Vocational Rehabilitation – A part of the Pennsylvania Department of Labor & Industry – offers career counseling & even scholarship monies for people who have arthritis & other disabilities.

Here are some of my past blog entries for the AFWPA that deal with living with/growing up with Rheumatoid Arthritis, including my new Ashley’s Journey to Wellness Series: here.

Kidshealth.org has some useful info on Juvenile Arthritis!

Check out the Arthritis Foundation’s JA Alliance for Juvenile Arthritis, here!

Last but not least, check out BUCKLE UP! The International Autoimmune Arthritis Movement that has a focus on “young” people with arthritis. Here is their website, here is their Facebook page!

One more thing to remember is that if you are in school – whether it is at the elementary, high school, or college level – you may want to take the time to try to educate teachers & classmates about your illness. If you need certain accommodations, do not be afraid to ask! Many people, even your teachers or administration, do not understand that this illness can affect young people, or, that it can have such multi-systemic and even disabling effects!

Here is an Arthritis Foundation resource page for Arthritis Success at School: http://www.arthritis.org/ja-school-success.php#5

If you are in college, there are often programs available for students with disabilities, of which arthritis is typically included. Check with your advisor!

Thanks for reading – and working young adults, check out our past blog on Working with Arthritis for more tips on dealing with these types of diseases in the work place!
Feel free to email me personally at aboynes@arthritis.org if you have any personal questions about living life with arthritis! Also, don’t forget to follow us on Twitter @AFWPA. You may also find it useful to follow @JRAPeeps.

Please feel free to share your comments, or stories on living with arthritis or having a child with arthritis….and, as always – be well!

Best,

– Ashley Boynes

Arthritis Foundation

Community Development Director

Western Pennsylvania Chapter

“Voted Best Blogger in Pittsburgh!”

I’d Rather Count My Blessings Jewelry Designer and Rheumatoid Arthritis Survivor, Shares Her Gifts – “Guest Blog” by Elizabeth Wald

Hello, Rheum for Wellness readers! We have a special treat for you today, as we feature a new entry by Guest Blogger, Elizabeth Wald.

Elizabeth, who lives in New York, suffers from Rheumatoid Arthritis, but does not let it define her. Instead, her sparkling personality is better defined by her offering of beautiful handcrafted jewelry, which she designs and sells. As I have said in past blog entries, it is important to surround yourself with things and people that you love while you are battling a disability or chronic illness such as arthritis. Elizabeth has turned to making tasteful and artistic jewelry as a release and a way to deal with the physical and emotional pains that come along with arthritis, all the while helping to raise arthritis awareness.

Through her work, she has found that, for her, the gemstones have healing properties as well as the process of actually making the jewelry being healing in and of itself. She is a friend of our chapter’s, and we are happy to share her story!

The concept of using gemstones for their “healing properties” has been around ever since the beginning of recorded history! For centuries, people have documented how certain types of stones have aided in their physical and emotional healing. Whether or not you believe in their power, it is a pretty intriguing concept to learn about. Aside from gemstones, hot stones are often used as therapy tools in massage therapies, and gold – along with gold STONE, a gemstone – were used in the “early days” of rheumatology – prescribed by regular medical doctors, nonetheless – to help treat arthritis! There is also documented scientific evidence that simply by looking at things of beauty, endorphins are elevated to help aid in pain relief.

While these concepts may have historical and possibly even scientific roots, we want to, as always, tell you that the Arthritis Foundation does not endorse any specific type of treatment and always encourages you to talk to your doctor about any treatment whether traditional or alternative. The views and opinions expressed from here are on out are solely that of the author and do not necessarily reflect those of the Arthritis Foundation of Western Pennsylvania. Please join me in “welcoming” Elizabeth Wald as she posts her first Rheum for Wellness Blog Entry.

Thank You!

~ Ashley Boynes, Western PA Chapter … Read On!

I’d Rather Count My Blessings:

Jewelry Designer and Rheumatoid Arthritis Survivor, Shares Her Gifts

By Special Guest, Elizabeth Wald

Three years ago, crippling pain from Rheumatoid Arthritis would require the removal of one of three tumors located in each web space of my right foot. I still carry on with the two other neuromas in my right forefoot only, the electrical hot sparks of shooting pains still exist. I have always used the term “Bettery,” for Surgery only, the trauma from this so called routine neuroma excision led to permanent nerve damage. Ouch!

I didn’t know what was worse, the pain, or the depression from losing my career as a Personal Trainer.

Added to this was a sense of isolation with a disease that was and still is unknown to everyone around me. There was no support from friends and family, as they thought my surgery was routine procedure, like getting a wart removed! Meanwhile, my foot was so blown up and grotesque that I had to visit the ER once for a hematoma, then acute pain and swelling that proved a risk for blood clots. I had once told my mother about my RA, only for some reason she thought I had Fibromyalgia instead, I later learned – when she asked me how my “Fibromalaysia” was doing.

When I corrected her, I heard her laughing over the phone, as tears rolled down my cheeks. My mother is an RN, and it seemed even she couldn’t understand what I was going through.

What felt like a life sentence of pain, disability and confinement to a wheelchair, would later become a blessing in disguise.

Ironically, this homebound life would open doors to a better place for me. It’s true. Now I have my own office – and so my colleagues don’t talk back to me! They are chipmunks, squirrels and many species of Northeastern and different migratory birds that feed in the Rhododendron bushes, which surround my home jewelry studio!

I hope you believe that in my most desperate hours of pain, I was able to lose myself in an art form – making beautiful jewelry – that may have really saved my life, if not my soul and spirit. Being diagnosed with Rheumatoid Arthritis was a mixed blessing. I now see light and feel power in beautiful gemstones that help my mood, and the pain. I have a purpose, which has only strengthened my mission to help the Arthritis Foundation, and ultimately people like you, readers.

These days, I turn to the stone Labradorite for comfort. Its beauty helps my pain enormously, AND helps the anxiety associated with it. When light hits this Feldspar mineral, its iridescence through a prism is breathtaking, igniting different flashes of color. I dreamt about this stone many times after I first saw it. The recurrent dreams were a vision that became a calling. I had always considered myself a spiritual person, but now I could finally explain why, as I later recognized that this vision would help expand on my jewelry designs utilizing healing stones. Labradorite feeds me with energy and positive thinking. It sorts out what I need to leave behind and what is beneficial for my future. It is stunning, and to no surprise, has been my best seller since day one. It has helped me move forward with doubts, and with resilience when I think of giving up as I battle this chronic disease. I choose certain healing stones on some days, and others for acute situations. “Something must be true about these gemstones and crystals from nature”, I thought…and I learned that many have been used for healing over thousands of years.

This is why I incorporate certain healing stones into my jewelry. They all serve certain purposes, and their true beauty cannot be captured on a photo. For instance, I’ve found that this holds quite true:

Labradorite is particularly effective in alleviating bone issues, disorders of the spinal column and the wear and tear of the joints. Rheumatism and arthritis may also benefit from this stone’s healing powers.

I reach for my Smoky Quartz pendant when I try to calm myself. The psychological effects this stone has on dissipating anger, by helping us see the reasons behind the anger – are key tools in handling my personal shortcomings. I walk with a limp and have been called a Rheumatard, a Cripple, and a Hypochondriac. The most aggravating comment is, “Why don’t you just take an Advil?” I don’t reach for an Advil when the pain escalates, rather – I scurry for my Smoky Quartz graduated necklace and its calming effects, so that I don’t knock someone out!

The most frustrating thing for me is our society’s seemingly complete lack of awareness, empathy and understanding of Rheumatic diseases. RA, for example, is not when someone tells you that they too, have arthritis just because their knee aches in bad weather. The next person that tells me I need to be positive and quiet when in excruciating pain should walk (oops, bad choice of words) in my shoes for one day. Just one day. Then perhaps they would do their research to gain awareness and further their knowledge on this disabling disease. I have lost many close friends to this disease… BUT – what a fascinating group of people I have met through this disease and because of it! Enterprising, compassionate individuals such as artists, writers, historians, and my favorite of all, Melinda Winner – a phenomenal Chef, Author, Mother, Missionary, Interviewer, Art Director, Comedian and human being. I consider this friendship not only a gift but also the best blessing of all, that I may not have had if not for this disease.

Also I have met friends through the Arthritis Foundation, specifically the Western PA Chapter.

Listen to the very first episode of Arthritis Radio, hosted by David Martin, and you will hear my Melinda Winner’s amazing story of courage, hope and inspiration. http://arthritisradio.podbean.com/2009/07/27/arthritis-radio-episode-1-cooking-with-arthritis/ I learned of the Western PA Chapter of the Arthritis Foundation through Melinda. Right away it was clear that David Martin, Executive Director, and Ashley Boynes, Community Development Director had something remarkable going on at their chapter…and that is, incredible talent. Ashley Boynes showed an ability to reach the hearts of so many readers through her writing. David Martin, whose ever-present focus on serious issues during his Arthritis Radio Episodes, showed an uncanny ability to maintain a sense of ease and humor at the same time. These are just a few things that make the WPA Chapter of the Arthritis Foundation extraordinary. This is why I would like a portion of proceeds from my arthritis awareness jewelry sales to serve as a donation and to help raise funds for their chapter of the Arthritis Foundation.

They show that anything is possible. In my generation “anything is possible” was not in the repertoire of my mother’s belief systems during my upbringing. I was instead told, “Smile, look pretty and don’t complain.” My thoughts, however, are this: “How the heck are people going to learn about Arthritis if we act this way and keep quiet?” As much as I truly loved and adored my mother, the impact of her words upon my well-being haunted me well into adulthood. But now, at the age of 46, I have something to share with all of you. It is how RA has enabled me to let go of bad influences!! You can, too!

Nothing is better than friends who support each other in their endeavors. Nothing is healthier when you learn who your real friends are. This disease gave me the wisdom to appreciate the difference. When I finally let go of my childhood inhibitions (well, let’s say most of them), it is funny how “yes I can” would take precedence, like it has with my jewelry!

I could breathe for the first time since I could remember. That is when it happened:

I wish I had photos of the junkyard piles of sterling silver wire I ruined during the course of a year, when attempting more advanced wire wrapping. A complete disaster from the start! Pawning the wire for new wire gave me a lot of raised eyebrows. Ha-ha! Although I share no photo to prove this, it just happened one night, because I didn’t care. I just wanted to have fun. I let go. The shell I wire wrapped came out perfect. Why?

It has nothing to do with luck. I learned how to feel the shell and let the shell guide my hands with the wire, despite my physical and emotional pain. Sometimes you simply can’t force things. I even designed a cage on the back of the shell for inserting birthstones or healing stones. It had a number of bidders but I simply could not sell it. I just couldn’t. When I finally sold the necklace I was free again. After that, my wire working came in to place – well, for the most part. After it took many years to accept all of the enormous hurdles and fears, which I still face with this terrible disease, I believe that it will be easier to handle. The process of MAKING the jewelry, for me, has become just as “healing” as the healing qualities of the stones themselves!

Like my jewelry sales – there will be lots of ups and a ton of downs as I continue to battle arthritis. But, hey, I get by with a little help from my Turquoise, and when it grounds me, I am well enough to count my blessings.

If you’d like, please take a look below at some of my featured items. I will donate a portion of proceeds from these jewelry sales if you mention code AFWPA/Ashley when purchasing. I am also available for consultation on the healing properties and pricing. Help spread Arthritis Awareness today!
Also please kindly bear in mind that 14k GF or copper wire is options in these designs. Copper also creates a magnetic field known to increase circulation, and help in the healing process through its magnetic properties. For a personal consultation on the healing properties of each Arthritis Awareness/healing gemstone pendant, (with or with out a matching chain or suede cord) and price list or to order, please contact:

Elizabeth Wald: (914) 393-4364

dryharmo@optonline.net

www.stonesinharmony.com

Please don’t forget to use the code Ashley/AFWPA for a 10% discount. Shipping and Handling fees are  $5.00 for pendants.  Thank you so very much for letting me share my story with you!  Twenty percent of the proceeds from your sales go directly to the Arthritis Foundation! Thanks so very much for helping the WPA Chapter of the Arthritis Foundation. Check out some featured pieces, below!

SMOKY QUARTZ ARTHRITIS HEALING PENDANT:

Smoky Quartz and Ametrine hand wire wrapped Arthritis Awareness/Healing Pendant:

Labradorite Graduated Necklace with Briolette Drops and focal teardrop Pendant:

Smoky Quartz Graduated Necklace:

Black Lip Mother of Pearl, hand wire wrapped in sterling silver.  Fresh water pearls, faceted citrine, sterling silver spacers, Swarovski crystals and sterling toggle clasp:

The Pendant of Light:  Labradorite:

Sincerely Yours,

Elizabeth Wald (wearing Sterling Silver Lariat)

Contact Elizabeth Wald: (914) 393-4364, email her at dryharmo@optonline.net or visit her website at www.stonesinharmony.com.

Use code AFWPA or mention Ashley when checking out to receive a 10% discount AND have 20% of your proceeds donated directly to the Arthritis Foundation.

Ashley’s Journey to Wellness – Entry #5 – First Entry of the Decade: Nutrition, “Hair-Pain”, Dermatofibroma & a Fresh Start – Ashley Boynes, Community Development Director, WPA Chapter

Photo taken New Year’s Eve 2009  – Happy 2010, Everyone!

Monday, January 4^th, 2009:

Not much has changed since my last entry. Have not yet seen much improvement with new treatments, have not yet gotten X-Ray of left knee back nor decided what to do about right knee. Also, still dealing with everyday nausea & everyday headaches; sore back, hips, and knees; and the occasional overall flare-up where every inch of my body is in some type of pain or at least, discomfort. The daily fatigue is ridiculous — I’m not going to lie; it’s the hardest part for me. Lately, even though I’m exhausted quite literally 24/7, I’ve been having trouble sleeping, which has been rough. I’m also feeling feverish even when I’m not running a high temperature, and, battling an annoying dry/unproductive cough and wheezing that won’t go away. (Is this common with certain medications? I use an inhaler but it doesn’t seem to help.)

Oh, and are you ready for a laugh? Here’s the best “weird symptom” ever – it trumps hands-going-numb and legs-on-fire-feeling… Last night, my hair hurt. Yes, you read that correctly – my HAIR! Hurt! Ladies (or guys too, I guess – lol) — have you ever worn your hair in a tight ponytail or bun, and it hurt when you let it down? That’s what it felt like, but, no ponytail, and certainly no conceivable reason for my hair follicles to be sore. Go figure! It is, among many other things in life, so ridiculous that it is almost laughable. The hair-pain has happened before, but last night it wouldn’t go away (even with my nifty little Heaven’s Therapy vibrating ‘octopus’ head massager) and was really a strange feeling! I don’t know if this can be attributed to Methotrexate, Remicade, Prednisone, or anything else – but I really hope I’m not alone in this little oddball symptom! (Please pause now to refrain from emailing me and calling me crazy.)

…Anyway…

One thing that has gotten worse for me in recent weeks is my nausea and stomach issues, including burning in my chest. I thought that this area was getting better for awhile, but, for the last 2-3 weeks my gastrointestinal issues from the Celiac have been worse. My gastroautoimmune doctor – Dr. Gastro – put me on Prilosec but that hasn’t helped anything. I know that probably some of it is the “seasick” feeling attributed to Methotrexate. Hopefully, it isn’t from accidentally being “glutened!” Even if I were, I don’t see how the effects could last THIS log. I feel as though I’m very careful with my gluten-free diet but I guess slip-ups are bound to happen here and there, especially if you are like me and enjoy eating out at restaurants!

…Which brings me to my next topic…

Starting today, though, in addition to staying strictly gluten-free, I’m trying to almost-totally cut out white sugar, and also limit intake of dairy products. Aside from rice, I’m going to avoid starchy foods as well. I plan on focusing on fruits, vegetables, and limited meat, eggs, and seafood. I’m going to start making more smoothies, juices, soups and chili, and salads. I’m also going to try to live with having my Starbucks chai only one or two times per week, and only one cup of coffee a day, IF THAT. (Remember, most experts say that coffees & teas are fine in moderation!) I’m going to stick with drinking a lot of herbal teas in place of my megasize, over-creamered coffee and fattening chai lattes. Now that the holidays are over, I’ll switch out the unhealthy (but delicious) dips for more healthful snack substitutes like hummus, nuts filled with protein and “good” fats, and organic, homemade salsa. Healthy, homemade stir-frys (in my brand-new wok!) and low-calorie ethnic dishes will also become a staple (helloooo, vegetarian tofu tacos!)

I’m also going to try to avoid night-time snacking. Being on Prednisone, I want to eat from the time I wake up until the time I go to bed (and sometimes even wake up in the middle of the night, hungry!) I’ve started eating low-fat Jello or raisins in the evenings to curb my appetite, and last night ate my last bowl of popcorn for awhile! It stinks.

Also, when I tell people about my diet, I get the “but you don’t need to lose weight” speech – and so I’m just going to put it out there, right now, in writing: I am not happy about this. I do want to eat whatever I want. I may be petite but I have gained 15 pounds from daily doses of the steroid Prednisone, along with gaining an appetite as big as Texas. I don’t want to have to do this, but, it is a MUST if I want to feel better both physically and emotionally! I want to lose 5 or 10, or maybe even all 15 “new” pounds, and, while I’m at it, maybe discover if there is possibly ANOTHER food/food component causing my autoimmune flares OTHER THAN gluten! It is worth a shot and could wind up being essential to my health! I’ll continue to do what it takes to feel better, to hopefully eventually have enough energy to work out, to make it through the day, to be able to do chores without crashing the rest of the day, to not be miserable. So, to everyone who decides to tell me “I look good” when I mention the D-word – THANK YOU but NO Thank You! This year, or at least until I begin feeling better and feel comfortable re-introducing certain items, I’m “resolving” to stick to this diet, as hard as it will be! (*Author’s Note: I will allow myself some leniency on weekends. I don’t care who you are, everyone needs to cut themselves a break now & then! Most diets fail if you do not allow yourself what you want at least some of the time!)

I also hope to have enough energy & strength to work out. Being so often in pain and struggling with the disabling fatigue has made it hard to stay active, THAT’S for sure! I’m going to try to take my dog for  (possibly short, but still better-than-nothing) walks even in the frigid weather, and I also want to find a yoga, pilates, or ballet class to sign up for. I may also invest in a new workout DVD or Wii Fit game to play at home. I’m also looking for a cheap used treadmill so if anyone has one that they want to get rid of….(hint, hint!)

So, I will keep you all posted with that stuff and my progress. I’m hoping that even a SMALL change in diet and/or exercise helps with at least SOME of my symptoms. I also wish to donate some of my time to volunteering at Children’s Hospital or a retirement home spending time with old folks. Even if it is one or two days a month, I think that it will help my soul and my spirit! Plus, you know what they say about karma! Maybe giving even MORE good than I already do will bring me some good health in return! (If you have any info on places where I can volunteer, please let me know! I can’t work with animals because I want to adopt them all, but I’d be happy to work with children with terminal or chronic illness; or senior citizens; or literacy programs!)

On an unrelated but very good note – and an update from my previous entry – I got the results from last week’s biopsy back. “Artie the Arm Lump” (yes, I named it) turned out to be dermatofibroma, a very common, benign soft-tissue tumor. Here’s an interesting fact for you: I read that these fibromas are more common in women with autoimmune conditions. That being said, no one really knows what causes them. But, at least there’s one less thing to worry about!

Not much else to update on … I go for my next Remicade infusion on January 18^th, and on January 15^th, I see a doctor of osteopathic medicine who focuses on both traditional Western medicine and also general constitutional medicine. I meet with Dr. Gastro this month and may try to get back on a naturopathic supplement and tonic regimen, as well as hopefully getting back into having chiropractic and acupuncture done. If all else fails, I’m trying to be seen at the Mayo Clinic in Rochester, MN – I’m going to do what it takes to get these autoimmune symptoms under control!! My thinking is that there has to be an underlying reason WHY my Celiac disease has been unresponsive, and why even with all the meds I’m on my rheumatoid arthritis is still flaring. I don’t care if I have to petition Dr. Oz or call in Sherlock Holmes or Nancy Drew for some detective work, it is all going to be figured out and the puzzle will be solved … hopefully sooner rather than later!

Now enough about me – what about you guys? How was everyone’s holidays? How are you folks who also suffer Rheumatoid Arthritis handling the colder winter weather? Have any of you guys had experience with the Mayo Clinic? What are YOUR new year’s resolutions – anyone else going to embark upon a new diet plan along with me??

And, last but not least – am I alone in the hair-pain situation? (At the very least, I’m sure some of you can relate to a painful hairdo in a DIFFERENT sense – particularly if you lived through the 1980’s…hehe)

Have a great first Monday of 2010 and a great week! I’m welcoming the new year with open arms! Wishing you all the very best in health and happiness! Thanks for reading and please leave a comment/feedback  and share your personal stories or thoughts!

And please remember that your support, friendship, and comments all really do help me to feel better along my journey to wellness! I am thankful to know that, at times, my blogs may touch, encourage, or inspire the many readers that I reach. Thank You!

Be well,

– Ashley Boynes

Arthritis Foundation

Community Development Director

Western Pennsylvania Chapter

“Voted Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness – Come Along for the Ride!

Click here for Entry #2 in Ashley’s Journey to Wellness - It Could Always Be Worse

Click here for Entry #3 in Ashley’s Journey to Wellness – Being a “Patient” Patient

Click here for Entry #4 in Ashley’s Journey to Wellness – X-Rays & Holidays!

Also check out our other Rheum for Wellness blogs and be sure to leave a comment and share with friends!

PS: I would like to extend a personal Thank You to author Melinda Blau. She penned the book, “Consequential Strangers” mentioned in my previous Ashley’s Journey to Wellness entry and was kind enough to leave a comment on the blog and send me a personal email. Her book did touch me personally and professionally and I was touched by her courtesy.

Ashley’s Journey to Wellness: Entry #4 – X-Rays & Holidays! – Ashley Boynes, Community Development Director, WPA Chapter

Wednesday, December 23rd, 2009

Monday was round #2 of the Remicade infusions. It was a lot less nerve-wracking than the first time. The truth is, there’s not much to be afraid of! The needle stick is practically painless, and you do not feel the medication going in. I included some photos of what the equipment looks like – the IV, stand, and room are a bit intimidating for anyone who is leery of hospitals, but seeing it here should make it less shocking for you to see in person if you have to go through it! I also advise that you think of it as a chance to sit back and relax. It is a quiet atmosphere, and a great time to catch up on reading, sleep, or just being alone with your thoughts. I admit there are times (see photo) when I get a little bored. But, it can be relaxing, in a way. For the first infusion, I brought a few magazines – 2 issues of ELLE, and People. This time around, I brought January’s issue of VOGUE (fabulous!) and a book, “Consequential Strangers.” This book was a nice Christmas gift from my brother and his girlfriend, and is a great book to read as I’m healing. It speaks about all of the people in your life who are on the outskirts of your inner circle – people who aren’t a part of your close social network and who you may not think matter, but truly do! While reading, I realized that my doctors and the hardworking nurses who help me through all of this are consequential strangers. People, like some of you, who are a part of my “online support network” or readers of my blog are also “consequential strangers.” I want to take this time to thank all of you for being important consequential strangers in my life, to thank you for coming along on my journey to wellness, and also, I want to wish you all a happy holiday season!

Now, moving on…the after-effects of the Remicade this time weren’t bad. As I was before, I was very fatigued. This is from the pre-meds that they give you – Benedryl with Tylenol. It also is probably the hassle of being at a hospital – always a draining experience – and the laziness of sitting there for hours. (FYI – my co-worker told me that you can request Claritin instead of Benedryl. My infusion site has never offered me this, they just offered to cut Benedryl dose in half, and I’m not sure if it interacts with any of my other meds, but I may inquire next time! Just food for thought for all of you out there – many people in my “Twitter family” said that they, too, suffered fatigue and drowsiness from the pre-meds and Remicade!)  So, Monday was a “lazy day” dabbled with some blogging for work and “vegging out” post-infusions.

Yesterday, however, was an interesting day. I took a half-day of work – but not for last-minute Christmas shopping. I visited with Dr. Rheumie and Dr. Dermatologist…with pit-stops at the x-ray place and my eye doctor! I complained to Dr. Rheumie about increased appetite, facial puffiness, weight gain from Prednisone but he told me I am not allowed to go off of my daily dose, just yet. So, the vain side of me just has to continue to just be patient. Luckily, my monthly bloodwork (for Methotrexate use) came back good! However, Dr. Rheumie agreed with Dr. Ortho about my options for right knee probably being Cortisone shots or total joint replacement. He did, however, encourage a second opinion with an “orthopod” as he called them. (I found this funny because I pictured some Transformer-like creature with 8 legs.) Dr. Rheumie also wrote me a prescription to have my LEFT knee – my “good”, i.e. “less-messed-up-than-the-other-one” knee X-rayed, as I’ve been having some pain and clicking with it in addition to all of the gazillion issues with my “bad” right knee. He suggested I get a temporary handicapped parking pass for certain occasions as needed until my knee(s) get fixed. He also said that if Remicade doesn’t start to work after 3^rd infusion (next month), that he’d up my dosage. He was very encouraging and hopeful that the combo of Remicade, Prednisone, and Methotrexate would help my RA issues. I’m just hoping they help the currently-seeming-refractory Celiac issues, as well, because that is a huge concern of mine.

So, after Dr. Rheumie, I saw Dr. Dermatologist who happens to be his wife! I had a hard bump/lesion type thing on my arm that I just wanted checked out. I thought it may be a side effect from one of my medications, or even from the Celiac, because weird skin things can happen with meds and Celiac, too. Little did I know she’d slice my arm open and do a punch biopsy, cutting it out to be biopsied. Now, neither she nor the nurse seemed overly concerned, so I’m sure it is nothing, but, come on – now I have bandaged-up stitches …NOT quite the accessory I wanted to don with my cute new sleeveless Christmas dress! (hehe)

Post-Dr. Dermatologist, I stopped at an x-ray/MRI place and at my eye doctor. (By the way, for those who were wondering, my bull’s eye maculopathy mentioned in last blog is still there, and didn’t get better BUT didn’t get worse – which is a GOOD thing!)

So, in one day, I ordered new (designer) glasses and a temporary (not designer) handicapped parking pass; got my left arm cut open; got my left knee X-rayed….and accidentally stole a magazine from Dr. Rheumie’s office! (It wasn’t on purpose, I swear!) I then started this very blog for the Arthritis Foundation, and met my parents and brother for dinner. Indulging in some gluten-free Quaker Steak wings with my family and with Christmas just around the corner, nothing felt that bad. I’ve decided to throw all of my health worries out the window this holiday season, for “In every life we have some trouble, When you worry you make it double….Don’t worry, be happy…”

This morning I suffered Methotrexate-nausea (took it last night!) and had to shower with Saran Wrap on my arm, but as I sit in my office listening to Christmas tunes, I smile. The new year, I hope, will bring me lots of happiness and GOOD HEALTH! So here’s hoping for me AND FOR ALL OF YOU, a happy, healthy, and PAIN-FREE 2010!

I’ll leave you with a quote – a Native American proverb — in case you’re feeling down as we all sometimes do on our roads to recovery… “The Soul Would Have No Rainbows If The Eyes Had No Tears.”

Happy Holidays, Merry Christmas & thanks for joining me on my Journey to Wellness! As always, I’ll keep you posted on my progress, and you do the same! PLEASE leave a Comment and share your stories, thoughts, feedback, etc.

Take Care & Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness

Click here for Entry #2 in Ashley’s Journey to Wellness

Click here for Entry #3 in Ashley’s Journey to Wellness

And don’t forget to read/comment on our other recent Rheum for Wellness blog posts on the 2010 Advocacy & Kids Summit, mind-body healing & positivity, how to give to the AFWPA this holiday season, and more!

LAST BUT NOT LEAST - Our Arthritis Radio online radio show & iTunes podcast has garnered over 6,000 channel visits in just a few short months, and our blog has over 17,000 views – amazing! Thanks for your support. Over your holiday break, please check out our latest episode of Arthritis Radio – a “greatest hits” of sorts – very interesting. You can listen to “Arthritis Radio: Episode 14 – The Best Of Arthritis Radio” at http://arthritisradio.podbean.com or simply by clicking here.

The 2010 Arthritis Foundation Advocacy & Kids Summit & How To Be An AF Ambassador!- Ashley Boynes, Hanna Gruen & Lori Knapp – WPA Chapter

We all have a story to share and information to spread – learn about the Arthritis Foundation Advocacy & Kids Summit and how to become an Arthritis Foundation Ambassador! Read on!

———————

I was diagnosed with rheumatoid arthritis in March, 2007 and it affects all of my joints.  I was feeling rather alone with my diagnosis and did not know what the heck was going wrong with my body. After my initial period of shock and denial, I started to do some research online and there was too much info out there, it was scary. I finally decided to contact the Arthritis Foundation in Pittsburgh and requested any and all information that was available; they also told me about the 2008 Advocacy & Kids Summit.  At the time, I was not actively involved with the Arthritis Foundation and did not know much about what they offered; I did not even know anyone else who had RA and thought I was going crazy.  But after learning a little about RA and the Summit, I completed the registration form and figured, I might as well attend the Summit and try to talk to others and see if they were suffering with the same types of problems, pain and related symptoms.

What an eye-opening experience!!! I have never met so many people who, even though they suffer and deal with chronic pain and problems, push through it and work passionately towards a common goal…increasing arthritis awareness! I felt empowered when talking with others and meeting with U.S. Senators and Representatives. It was at that moment, that I realized my life’s path…I immediately signed up to be an advocate and an ambassador to help increase arthritis awareness and strive for better medicines, better ways to manage our conditions and hopefully find a cure.

Since then I have been involved in many Arthritis Foundation events and made contacts with local officials and other VIPs that I never would have done without that initial connection at the 2008 Advocacy & Kids Summit. If you want to make a difference and become more involved, then you definitely need to register. I will be there again this year, not as a volunteer, but an Arthritis Foundation employee, advocate and ambassador!  Please join me in raising arthritis awareness and improving your quality of life and definitely your self-esteem and self-worth.  See you in Washington, D.C. on March 1 – March 3!
- Lori Knapp, Director

Community Development for

Laurel Highlands Region

lknapp@arthritis.org

———————

ad⋅vo⋅cate

[v. ad-vuh-keyt; n. ad-vuh-kit, -keyt]  noun

1.) a person who speaks or writes in support or defense of a person, cause, etc.

We need YOU to become an Advocate! Registration for the 2010 Advocacy & Kids Summit is now open.

So what, exactly, is the Advocacy & Kids Summit? It is an event held by the Arthritis Foundation to increase arthritis awareness and to advocate for the cause. This year, the Summit will be held in Washington, DC from March 1^st-3^rd, 2010. This unique and exciting event will include advocacy training, kids’ activities, and the opportunity to meet and network with your local state representatives and senators. By sharing your personal stories and your trials, tribulations, and triumphs as you live with arthritis and related disease, you can disperse valuable information to these lawmakers, and aid in bettering your circumstances through encouraging the improvement of laws and the betterment of health care. The most important part of the advocacy summit, however, is to spread the word about the 117 types of arthritis – including childhood arthritis – and to provide education on these illnesses and the toll that they take on human lives. We need government and lawmakers to view individuals with arthritis as people, and not just as a number, a statistic, or a preconceived, stereotyped group that they may have in mind. Arthritis sufferers come from all communities, and range in age, ethnicity, and background. There is no set portrait of what an arthritis patient looks like – and the more personal stories that we can spread across Washington DC, the better!

Speaking up and speaking out is important – and we can let our voices be heard! Let’s move together to make a difference! Our ultimate goal is to find a cure for arthritis. However, without awareness, it is nearly impossible to obtain funding for research, or to help better the quality of life for those afflicted with arthritis, the #1 leading cause for disability in the United States. So why not mark your calendars and take a trip to our nation’s capital for this worthy and meaningful cause?

If money is an issue, you can take comfort in knowing that if you live in certain districts you are potentially eligible for stipend money to help cover the cost of your trip. Currently, the Arthritis Foundation is accepting applications for stipends for individuals living in either Murtha’s district (PA 12) or Schwartz’s district (PA 13). (By clicking on these PA12 or PA13 links above, you can find out if your county falls into one of these two districts.) Please contact us if you are unsure which district you are in, and if you need further information on whether or not you qualify for this stipend.

This will be a great event for advocacy networking, spreading awareness, and for children with Juvenile Arthritis. So much will be going on, and there is sure to be something for everyone! Kids will be able to learn how to advocate for themselves, there will be a Rheumatoid Arthritis “meet and greet”, updates on research, an advocacy dinner, a chance to meet with Senators & Representatives, and more! Visit http://www.arthritis.org/advocacy-summit.php for more detailed information, and how to register. If you need info on the stipend, please visit http://www.arthritis.org/advocacy-stipend-application.php – but hurry, the deadline for stipend applications is January 8^th, 2010. We hope to see you there – and remember, this event is open to everyone, all over the nation! When registering, please be sure to let the Arthritis Foundation know that the Western PA Chapter referred you. ALSO: If you attended last year, please leave a Comment on this blog and share your experience with others. If you do sign up for this year’s event, please also leave a Comment and let us know – we’d be happy to hear from all of you who are planning on attending!

We CAN make a difference. You are NOT alone, so let your voice be heard! Remember: The Power of 1, The Voice of Many.

Let’s Move Together…. to Washington D.C. for the 2010 Advocacy and Kids Summit!

http://www.arthritis.org/media/advocacy/Advocacy_Book_2010_vf.pdf

PS: Please feel free to contact our AFWPA advocacy “experts” Lori Knapp, or Hanna Gruen! Call 412.566.1645 to be put in touch with them and to learn more about advocacy or visit: http://www.arthritis.org/chapters/western-pennsylvania/grassroots.php Below, Hanna will share with you how to become an Arthritis Foundation AmbassadorThank you for your support!

Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

———————

What is an Arthritis Ambassador??? It is someone who will commit to at least one year of building a strong relationship with their Members of Congress and their staff. The expectation of these ambassadors  is that they will participate in a monthly conference call with Arthritis Foundation staff  and fellow ambassadors throughout the USA. Each month a task is assigned. It may be to contact our reps regarding pending arthritis legislation, to attend a town meeting or to encourage members of Congress to participate in local AF events. This offers a wonderful opportunity to connect with others who are enthusiastic about advocacy and to learn of their successes.

You have 2 such people from our chapter who are actively involved and from whom you do and will hear from time to time with requests for your input. Lori Knapp and I try to be on every conference call each month—-we both have been in touch with local and state legislators continually advocating on behalf of Pennsylvania’s children and adults who suffer from arthritis.

So, if you don’t yet know your local reps: make a phone call , try to get an appointment to meet staff involved with health care and keep them abreast about arthritis and how it affects you. Make them aware of difficulties presented to you by the health care system .

If you have questions or comments, by all means contact Lori or myself .

-Hanna Gruen,

Chair of Advocacy

Arthritis Foundation, Western Pennsylvania Chapter