Archive for July, 2012
I filled up my first sharps container and sent it away in the mail today. I gotta say, I felt a glowing sense of accomplishment. Damn, that’s the number of times I’ve stabbed myself in the thigh, the number of pep talks I’ve given myself, and how far I’ve come.
So I deserve a gold star, or a gluten/dairy free cupcake LOL.
On that note, I wanted to tell you that I’ve had two weeks of perfect injections. No blood, drama, pain or swelling. No freakouts, tears, or anxiety. Here’s my new process: let the needle warm up for half an hour – definitely not less. When it’s even a little cold it stings more and I think it results in more welts. While it’s warming, preferably by the bathtub, I do something relaxing and distracting. A foot bath or read or both. About five minutes before, I ice my thigh. Then, during the shot I pull my skin a little tight, take a few breaths to relax and always press the injection trigger on the exhale. Afterward, I’ve been applying a natural, plant-based anti-swelling ointment that I found at Pharmaca. I think it does help reduce swelling.
Anyway, hope these tips help you. And congrats to all of you who have already reached your first sharps container milestone!
I have to admit, it’s been a rough couple weeks. Stress in my personal life and friends’ lives, as well as some important projects at work and working out a bit too hard, has taken its toll on my body.
Symptoms that I left behind months ago seem to be rearing their ugly heads. The bottom of my feet ache and swell to the point that no shoes make them happy. My feet hurt even doing small things, like pushing down the gas pedal. I feel very, very fortunate that this doesn’t prevent me from running and working out. For whatever reason, I lace on the tennis shoes and feel OK for that hour or so. It’s worth it physically and mentally, even if I might pay a little afterward.
My left wrist has visible nodules that seem to be getting worse, not better. Just the fact that I can see the effect on RA can send me into a mental tailspin. So I’ve been trying very hard to replace negative thoughts with positive, neutral or grateful ones.
Me: Oh my god, look at my wrist. Pretty soon RA will take over my body and I’ll be totally deformed.
My reply to myself (no, I’m not schizophrenic): Just because you have a couple Rheumatoid Nodules doesn’t mean your RA is worse. They’re not hurting you, they’re barely noticeable and they won’t be there forever.
Me: Shut up and let me wallow.
OK, so clearly I have a little work to do.
In my attempt to change my thought patterns and gain perspective, I’ve ordered two books off Amazon. I’ll post reviews here when I’m done.
- A Resilient Life: Learning to thrive, not just survive with rheumatoid arthritis by Kat Elton
Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease.
- The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed by M.E.A. McNeil
Rheumatoid arthritis (RA), a disease characterized by inflammation of the joints, is one of the most disabling forms of arthritis and affects over two million people in the United States. Without proper treatment it can lead to long-term joint damage, chronic pain, loss of function, and disability. From the first moment of her diagnosis, author M.E.A. McNeil took charge and educated herself on every aspect of her condition. Now, as a “patient-expert,” she guides those newly diagnosed step-by-step through their first year with RA. McNeil provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. The First Year—Rheumatoid Arthritis is an essential resource for everyone who wants to be an informed, active participant in the management of their condition.
Jane McGonigal’s TED talk on how to use gaming strategies to get through illness and tough times and add years to your life.
There’s something about having a relatively unknown and widely misunderstood disease that is very lonely. It’s not that I don’t have supportive people in my life, I do. I count myself blessed to have caring friends and family, a talented team including my rheumatologist, naturopath and therapist, yoga instructors and personal trainers. I am a lucky girl.
But here’s what I don’t have: anyone in my life who has RA or truly understands what I’m going through.
In an effort to not feel quite so alone in this, I have a strong desire to connect with people like myself. People struggling with, living with, and surviving RA.
The strange thing is, I’ve reached out to people with RA in my city. A fellow patient of my rheumatologist who told the doc that she was willing and eager to talk to me (she has not returned my calls), a high school friend of one of my close girlfriends who’s had RA since she was in high school (despite accepting my friendship on Facebook, she’s not responded to any of my RA-related messages), and a woman my age who worked with my sister and was full of advice and thoughts and support (to my sister that is, she has not returned my emails). What is it about RA that makes people shut up and shut down?
I’ve been so befuddled by these ignored calls, messages and emails. Don’t other people with RA want to connect with other sufferers, share stories and support one another? Am I really the only one who yearns for this?
This is the void that blogging fills for me. Yes, I likely won’t meet any of you in person, but reading your blogs and shared stories and getting your comments is a true blessing. It assures me that I’m not alone in this.
So for that, whoever is reading this, thank you from a RAD blogger.