Archive for category Raynauds/Chilblains
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
Mine hit me right around the time that my Raynaud’s decided to show it’s full colors (no really, my hands were fantastic colors of red, white and purple). Why? Probably because I was 14 and my hormones were raging.
Whatever reason, come awkward adolescence my hands began to shake. It was worsened when trying to hold something, particularly something that was either extraordinarily delicate or scalding. It was made even worse when there was an audience or I was nervous or embarrassed. As you can imagine, class presentations were my worst nightmare.
And needless to say, awkward adolescence just got a whole lot worse…
On really bad days my head would try to shake itself off my neck. But mostly, it was my hands, with their omnipresent jitter.
Unlike when I was diagnosed with Rheumatoid Arthritis, I knew exactly what I was in for. About half the aunts and uncles on my mom’s side have these same shakes. In fact, many people around the world do. It’s called an Essential Tremor and it can cause your hands, head or voice to shake. We don’t know why and we don’t have a cure (sound familiar?).
One aunt has a particularly bad rendition – her head never pausing. So I was filled with a sense of dread and acceptance when I noticed them in myself; I was one of the unlucky ones, stuck with the shakes and destined to have it for the rest of my life.
To my surprise, by age 16 my Familial Essential Tremor had all but disappeared. Occasionally my hands would shake a bit when I was especially nervous, but it was nothing compared to what it had been a few years earlier. People stopped pointing it out. I was ecstatic.
It’s basically been a non-issue since then. But now suddenly, at the age of 31, I seem to be a bit shakier. It’s not bad enough that it’s affecting my head, but it’s been bad enough to spill hot coffee while pouring, to have people comment and stare yet again, and for me to have flashbacks back to those rough adolescent years.
Like RA and Raynaud’s Phenomenon, there is no cure for an essential tremor. It’s just … a condition. A genetic mutation, according to the Mayo Clinic.
So, what can I do? Well, avoid caffeine, alcohol and stressful situations, for starters. But, since that’s not going to happen for me right now, I’m sticking to hoping that it’ll mysteriously disappear, the reaction to a 30-something’s hormone cycle, like it did when I was 16.
If you’ve followed my blog at all, you know I’ve tried lots of different diets to help improve my RA symptoms and circulation issues. One that I just haven’t been able to stick to is cutting out caffeine.
I’m sorry, I just don’t know how to function without the stuff and green tea in the morning…it just isn’t the same as a nicely brewed cuppa coffee (or an almond milk latte – mmm mmm good).
I made an awesome discovery recently that is alleviating my guilt of coffee drinking: Add a bit of cayenne pepper and a healthy dose of cinnamon to your coffee grinds in the morning and, walla!, fancy morning coffee with the added benefit of two inflammatory/pain-reducing, circulation-boosting superfoods. I haven’t tried it with ginger yet (another inflammatory/pain-reducing, circulation-boosting powerhouse), but that may be worth a shot too.
Try it and let me know what you think!
I have running on the brain.
This is probably not the best thing to be thinking about, as I promised myself that due to last year’s Chilblains, this year, I would take a break from running in the cold. Well, guess what, it’s January and it’s cold, but I want to run! And no, the treadmill just doesn’t cut it for me.
The weather was nice this weekend, so I went for a gorgeous run on the mesa. The only problem is that there were still puddles and a bit of snow coverage.
Anyway, I think that run, combined with two days of skiing prior and one day of wearing my favorite, not-so-comfy boots post-run (But they’re vintage!! How can I say no to them when they stare at me from the closet that way?) was the perfect Chilblains trifecta. Sure enough, my toes are painful, swollen, itchy, red and purple. 😦
It hasn’t stopped me from wanting to run however, it’s just getting me dreaming of warm runs and destination races. And in my daydreaming, I am imagining crossing the finish line on my second marathon. This time sub 4:30.
I’ve been looking, and the Medoc Marathon sounds like a blast. A run through French vineyards with wine and cheese served at water stops? Mais oui, s’il vous plait.
Is anyone else planning a big race for 2014? Has anyone done the Medoc? And most of all, anyone out there a runner with bad circulation and/or Chilblains who has advice that doesn’t involve the treadmill? Merci beaucoup!
I have been meaning to write a post about Raynaud’s Phenomenon and Chillblains for some time. So why not today while I’m watching snow fall peacefully and thinking, that won’t be good for my toes.
First off, for those of you that don’t know, Raynaud’s is a circulation condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Meanwhile, Chillblains is a tissue condition that occurs with cold exposure, causing redness, blisters, pain, inflammation and itching.
For me, what this actually means is that I have struggled with cold hands and feet from poor circulation my whole life. When I hit puberty, this translated into my hands and feet occasionally (usually at really inopportune times, because Raynaud’s can be associated with emotion) turning really spectacular shades of blue, red and purple. In my late 20’s, the most common symptom is losing all blood flow to my hands and feet when they’re extremely cold or in high altitude. This causes them to go white and numb.
Then, this year rolls around and my toes are now prone to the really painful, unattractive blisters associated with Chillblains after cold exposure. Fun!
I’m only writing about this because it took me forever to diagnose these two problems. When I first got Chillblains, I thought I’d had a run-in with a troop of vicious spiders that had bit up my toes.
Now, unfortunately, the only treatment I’ve been prescribed is avoiding cold (Ha! Who are we kidding? I ski and snowboard… and I’m training for a marathon in the winter). Other tips include warming your extremities slowly when you come in from the cold (much like frostbite). I’ve also found putting witch hazel on my toes twice a day helps a little.
Though my doc says these are two separate issues from Rheumatoid Arthritis, I’m not convinced it’s unrelated. I am curious how many of you autoimmuners out there also suffer from circulation issues? If so, any tips?
AND, in case you didn’t see my last post, please consider donating to help me reach my goal of raising $500 for autoimmune disease research and running my first marathon! I’m only $200 away!