Every year, I take my dog to see Santa Claus. Not just because I spoil her rotten, but my beautiful Georgia wasn’t supposed to live past the age of 3 (she is now 7.5 years-old). She has a debilitating and painful condition called Syringomyelia. Living in pain myself, I vowed to never let her suffer. It took about 6 months to get the condition under control with a combination of Eastern and Western medicines and treatments. I drive 45-60 minutes each way to take her to acupuncture monthly. I spend a fortune on treatments that aren’t covered by her insurance. She eats an organic and grain-free diet. She takes the most expensive joint and skin supplements because her knee joints are luxating and cause her pain, and her skin is dry due to medication and flakes. She takes 14 pills a day. I walk her rain or shine because she needs exercise. Through the years, we’ve survived horrific flares and medical complications. I’ve probably shed more tears over her pain than my own. So that Santa Claus picture we get taken every year symbolizes victory to me. Another year with my Georgia. Another victory over SM.
I’ve been fighting Georgia’s disease since 2011. I’ve been fighting my own disease since 2001. I don’t take pictures to celebrate another year as a victory because prednisone makes me so bloated that I don’t look like myself. I do use a combination of Eastern and Western therapies (when I have time to do it). I make sure my doctor appointments are immediately after work and are located on my way home. I don’t always have cash for acupuncture treatments, recommended supplements, gym membership because all my extra money goes to Georgia’s care. My diet most often relies on my energy level and my ability to prepare a meal. To me, cooking a full meal after working all day is a victory. Oh, and let’s not forget stress eating because honestly, living in pain sucks and chocolate makes me happy.
I’m not sure why I felt the need to write this all down. It could be that I am seeing Georgia’s mortality more clearly the older she gets. It could be that I am seeing my own. Could be that I lost another beloved chronically ill pet, and Georgia’s health is now my only focus (beside my own). It could be that my 5th biologic drug failed me and I’ve lived the past 10 months in constant flare and pain. It could be that I’m starting over on biologic #6 and I’m scared that it won’t work. Hell, I might even be scared that it will work for a little while and then fail again.
It could be that focusing on Georgia’s health keeps me from freaking out over my own. Could be that even though I know my diseases are incurable, I still hold out hope for the cure.
to be nominated.
I found out this blog was nominated for HealthLine’s Best in Blogs of 2016 the other day. I’m not sure who nominated me, but I appreciate it so very much. You can vote for “As my joints turn” daily by clicking on the link. It’s a little tricky. You have to search for AS MY JOINTS TURN, then add your email. After you vote, the screen goes dark. Scroll up to click on “I’m not a robot”. It prompts you to send a verification email. Your vote does not count until you click on the link from your email. I want to say thank you again for reading my blog. I certainly don’t write it for contests, but appreciate nod so much. It’s nice to know more than just my family reads my blog (although I’m not sure they read it often either LOL).
If I win, I’m hoping to make a donation to a local food bank. Thank you so much for your support!
Click here to vote:
I just attended my third American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Washington DC. I attended as a cofounder of IFAA (International Foundation for Autoimmune Arthritis). While there, I had the opportunity to speak/interview researchers, industry leaders, and other member of non-profits as a part of ACT Live (learn more about A Community Team (ACT) here: http://bit.ly/2faPBOA). I was able to work alongside my amazing IFAA crew (Tiffany Westrich (CEO/Cofounder), Kerry Wong (Executive Assistant), Laura Schaaf (Training Coordinator), and volunteers extraordinaire Deb Constien and Therese Humphrey. We were also joined by Julie Cerrone (WegoHealth/It’s just a bad day, not a bad life), and Charis Hill (Being Charis- a voice for many).
Tiffany Westrich-Robinson, Charis Hill, Julie Cerrone, Kelly Conway
An All-Star team, right?
The ACR/ARHP annual meeting is not a patient event. It is for professionals in the field of rheumatology to link with each other while learning about the latest in cutting edge education, research, and advocacy. Our attendance at this conference gave us an opportunity to meet and interview some of the top people in the rheumatology community as a part of our ACT project. We at IFAA and ACT feel that patient-centered research is vital to the rheumatology community. We want to ensure that the patient voice be heard throughout the research and development process, and identify where in the process that patient inclusion could positively influence the outcomes. We spoke with researchers, doctors, and patients from all over the world on the pros and barriers of patients involvement in research. It was thrilling to be a part of this. I have to say, it was extra special to interview researchers who are also patients.
Please head to IFAA’s Facebook page to see all the interviews that have been posted thus far. Thanks to IFAA for this amazing opportunity! https://www.facebook.com/IFAutoimmuneArthritis/?fref=ts
I was only able to interview 2 people because I had to leave early to get back to work. I’m far from a good interviewer, but I tried my best.
My hand looks deformed. It hurts to use it and aches when it’s still. I’d say it is an 8 on a 1-10 pain scale. My ankles, knees and hips are also hurting. Nothing severe (probably a 5 out of 10 on a scale), but enough to make me limp and struggle with stairs.
Three weeks ago, I started my 6th biologic drug after almost a year of roller coaster health. Since then, life has been fairly busy and insane: A concert after work, parent/teacher conferences, a part-time job, multiple doctor appointments, constant errands after work, and attending the American College of Rheumatology’s Annual Scientific Meeting in Washington DC. Before starting this latest biologic drug, I would not have been able to get out of bed after these two insanely busy weeks. Honestly, I’d never be able to do 1/2 of these activities. Since starting this new treatment, I still feel pain, but it’s not making me feel sick. Instead of having both hands swollen and achy, I have one hand in rough shape and the other is hanging in there. My ankles and knees are swollen, but the pain is manageable. I’m definitely seeing a reduction in pain, and a slight reduction in swelling. Dare I hope that this drug is working? Is feeling so-so the best I can hope for? I guess time will tell. Until then, I’ll keep looking on the bright side, because it can always be worse.