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 3rd 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.
Tags: 2010, AFWPA, arthritis, Arthritis Foundation, arthritis radio, Arthritis treatments, Ashley Boynes, Ashley's Journey to Wellness, autoimmune, autoimmune disorders, awareness, biopsy, blog, celiac, Celiac Disease, Childhood Arthritis, chronic disease, chronic illness, Chronic Pain, dermatology, healing, health, holidays, human body, infusions, Inspiration, inspirational, invisible illness, iTunes, journey, journey to wellness, JRA, Juvenile Arthritis, Maculopathy, medications, Methotrexate, New Year, orthopedic, Personal Essay, Personal Story, Pittsburgh, podcast, Prednisone, remedies, Remicade, rheumatoid arthritis, rheumatology, support, therapies, treatment, weblog, wellness
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December 23, 2009 at 7:30 pm
“The Soul Would Have No Rainbows If The Eyes Had No Tears.”
Wow, what a beautiful thought. I wish for your health in the new year.
December 23, 2009 at 8:27 pm
Ok, after 8 years of taking Remicade, I still need to kind of hang out for the rest of the day. I try not to stress out too much and now consider it a spa day for me. It is a nice quiet time for me to just relax with out all of the craziness of my normal hectic life. I even told my infusion nurse that they should hire a manicurist and maybe a massage therapist to do some other treatments at the same time. Well, I hope the infusions work for you. I know that Remicade has been a great drug for me.
December 23, 2009 at 9:58 pm
Ashley, you have given me a holiday gift! I’m so happy that my book “spoke” to you–as I hoped it would while I was writing it. I hope you don’t mind, but I’d like to put a link to it–with my own comments–on my website. This is my 13th book, but it is probably the one that means the most to me, mostly because I think it has such an important practical and spiritual message. Thanks for sharing your experience with me–it’s the kind of reaction every author dreams of. Or at least I do!
December 23, 2009 at 11:01 pm
Good Luck Ashley on your journey . I wish you a very merry Christmas and a pain free New Year ! The work you do is amazing for arthritis awareness , thank you !
December 24, 2009 at 3:52 am
I now have a new book to check out! I’m going to look for it after the holidays…that sounds awesome.
After the first infusion, where I seriously passed out on my nurses and scared them half to death (hey, they had plenty of warning!), we had a lot of fun chatting with other patients. Of course, I can’t sit beside someone without finding out their life story before I walk away!
Good luck on your journey to wellness and your followers are sending all our support!
December 24, 2009 at 5:41 pm
good luck with your journey! i read your #2 and #3 entry. thank you for sharing it was interesting and made me think about alot!….i always keep you in my prayers even before i read your entrys. i knew you had health issues from ole’ high school years but really understand now that ive read about it…i know what that punch biopsy felt like, 2wks ago i had that done. i just had my stitches removed on the 18th, i had a red patch on my arm they thought it was lupus from my other symptoms but turns out it was only excema!!!…thanks for sharing! good luck xoxo
December 28, 2009 at 7:34 pm
Can’t thank you enough for providing insight into the treatments and day to day living with this disease.
You’re such a brave lady for doing so,and so very helpful to those of us in the same boat.
January 4, 2010 at 10:05 pm
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January 16, 2010 at 2:01 am
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