Archive for category Dealing
Medicine Milestone
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on July 26, 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!
Omega 3s
Posted by My RAD Life in Alternative Medicine, Dealing, Diet, RA/RAD on July 25, 2012
I assume many of you already are taking Omega 3s. As far as I’ve figured out so far, you want to look for an omega 3 with a high EPA to DHA ratio (about 3:1). It’s not that DHA is bad, it’s just that it benefits things other than RA, like brain trauma for example.
The Quest for Knowledge
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on July 24, 2012
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.
Example:
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.
Using Games to Survive & Thrive
Posted by My RAD Life in Dealing, RA/RAD on July 16, 2012
Jane McGonigal’s TED talk on how to use gaming strategies to get through illness and tough times and add years to your life.
Why Blog?
Posted by My RAD Life in Dealing, RA/RAD on July 12, 2012
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.
Respecting The Journey
Posted by My RAD Life in Dealing, RA/RAD on June 30, 2012
I was getting tips on how to prevent pain and stress in the wrists when doing yoga with RA, and my instructor said something so kind, so perfect, so wise, and so simple, I had to share.
“I respect your journey,” she said. “I know you may not see it that way now. You may see it as a pain in the ass and that is fine, but you are on a journey and I respect your path, strength and courage.”
Wow. Powerful words. In about ten seconds she had the reaction to the news of my RA that I realized I was seeking. Acknowledgment that it is a difficult card to have been dealt and it’s not my fault to have it. Permission to react any way I want. Support. Confidence that the circumstances I’m in now will ever evolve. And finally, encouragement of my power to deal with this.
Woe is My Feet
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on June 21, 2012
No, these aren’t my feet. I wish they were. These feet look happy and pain free.
The last couple days were rough. Once again, my feet were hurting and I was consumed by thoughts of “oh my God, the drugs aren’t working” and “it’s because I’m down to only four methotrexate per week (and Enbrel).” Or, maybe it was just the normal ebbs and flows of life with RA. But of course my mind doesn’t like that thought either. That thought means it might be like this forever.
So with my feet hurting, two days ago I thought wisely that I should not wear flipflops, which let my feet swell, but aren’t supportive for the painful pad of the foot. Of course heels were out of the question and tennis shoes would just throw my outfit too far off (I’ll sacrifice a little bit of style, but I just can’t go that far). I opted instead for my expensive, less-than-flattering, mary-jane-style shoes with nearly-orthopedic inserts, lots of support, and an adjustable velcro strap to counter swelling.
My feet walked me to work relatively happy. By lunchtime, they were so swollen, no amount of loosening that little velcro strap was going to help. I spent the next few hours barefoot (probably didn’t thrill my coworkers). I forced my feet into the shoes and found myself a ride home – no way was I gonna walk if I could help it.
I ended my night with my aching, painful, and now blistered feet in a cold foot bath. It helped a little.
Cue the next day. Guess what, I woke up with hurting feet. They were back to that point where rising up on my toes, even a little, is pretty excruciating. Flipflops were out, my expensive RAD shoes were out, tennis shoes were…out (sorry! I’m just not ready to bring tennis shoes into my work outfits yet!). I felt pretty good about another option: boots with no heel and inserts that would give my feet padding and allow them to swell. Yes, the weather was unseasonably hot for June, but I could sport boots with a dress and make the look work. The great style/pain compromise settled, I happily set out on my short walk to work.
Immediate pain, which of course pained me in another way: it was a painful reminder of how badly my feet hurt in these shoes in my pre-diagnosis days. Only a few hours later, I could feel my feet swell to the edges of the boots. That was another rest my feet kinda night.
And then there’s today. I wake up expecting pain, but I feel fine. Overjoyed, I lace up my tennies (to workout, not to go to work!) and go for a run. It’s a little shaky, but I’m feeling so much better, it’s powerful. My feet are feeling good, so I opt for my greek sandals with plenty of padding on the sole. Mostly pain free all day.
Don’t get me wrong, I’m not complaining since today is a great day for my feet, but the pain rollercoaster of RA is physically and mentally exhausting. There’s just no predicting when a flare will hit or how bad it will be. And there’s no science to why it gets better, at least no science that I’ve figured out.
As my rheumy says, you’ll drive yourself crazy wondering what causes what. I guess it’s best to just take care of myself as well as I can – plenty of sleep, minimize stress, keep at my high fruit, veggie and omega-3, no dairy and gluten diet, and appreciate the good days. At least, that’s what I’m doing today.
Dealing with RA
Posted by My RAD Life in Dealing, RA/RAD on June 20, 2012
Just some fast tips to help with dealing with an RA diagnosis. Of course I’ve read all this before, but reading it again helped me.
Visit to the Rheumy and the Enbrel Chronicles
First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”
Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!
I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.
I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.
I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.
I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.
One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.
My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.
EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.
An Awesome, Inspirational Speech
Posted by My RAD Life in Dealing on June 5, 2012
I got a chance to see Woody Roseland speak this weekend about his experience going through chemo and having cancer. He had actually just gotten done with his latest round of chemo and was doing great. This guy was so incredible to listen to. Unfortunately, I couldn’t find a video of last weekend’s talk, but I did find this other one which is similar.
My favorite moment: “It’s rare that life hands you a gift-wrapped oppportunity to prove yourself. To show yourself and the world what your made of…”
Here’s a bit more on Woody:
Woody is a natural-born entertainer constantly socializing and telling jokes much to the chagrin of virtually every teacher he ever had. Once Woody reached high school he started playing football and quickly moved up the ranks seeing varsity playing time in just his sophomore year. As Woody trained for his senior year of high school football, a nagging pain in his left leg left his doctors, trainers and coaches puzzled. Eventually a biopsy showed that the pain that had sidelined Woody was a rare form of bone cancer. Woody immediately started an intense regimen of chemotherapy along with a complete knee replacement that ended his football career. The cancer returned four separate times, each with its own unique set of challenges. In June of 2011, a four inch tumor was discovered in Woody’s left calf, requiring immediate amputation. During his time in the hospital is when Woody first realized that his affinity for comedy could be combined with his experiences enduring the hardships of chemotherapy. He initially honed his skills by talking and joking with his doctors, nurses, and fellow patients. He now shares his message of hope, perseverance, and positivity everywhere from charity fundraisers, corporate events, to school assemblies and hospital rooms.
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