Rolling with the punches/aches/pains/flare ups since 2016. Rheumatoid arthritis might be invisible, but it’s still hella painful. Be kind to everyone for you don’t know what battle they’re fighting.
Just a friendly reminder to be gentle with yourself. We can be our own toughest critics sometimes, but we’re all doing the best we can. Also, the week is more than halfway through - so there’s that!
Saturday, May 3rd was #WorldASday and SAA went blue! Go blue with AS awareness! #Ankylosing #Spondylitis is inflammatory #arthritis of the spine and we need more awareness!
Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~
“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.” “My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today) OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….” Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.” “Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)” #Truestory
“My name is Wendy Krulee and I have Ankylosing Spondilitis (AS)….I blaze the trail for others by learning as much as I can about my disease and by spreading awareness. I will “kick that door in” as Cookie would say and I will kick all the shit off my bucket list when/while I can. I will NOT let this disease rule me. It is not who I am, it is just a portion of me that makes up the whole, good and bad.”
What a powerful image…“I didn’t know my son took this photo until this morning when downloading from my camera. This was 2 weeks ago when I was barely able to get out of bed due to AS. Makes me want to cry thinking about what might have been going through his thoughts that made him decide to take the picture.” ~ Melissa Levanduski #ankylosing #spondylitis #arthritis #inflammation #invisibledisease #chronicillness #rheumatoid #autoimmune #spinalcord #infusion #standtall
Taking daily vitamin D supplements — or a combination of vitamin D and omega-3 fish oil — appears to carry a lower risk of developing autoimmune disease, with a more pronounced effect after two years, finds a trial of older US adults published by The BMJ.
The researchers say the clinical importance of these findings is high, “given that these are well-tolerated, non-toxic supplements, and that there are no other known effective therapies to reduce rates of autoimmune diseases.”
Autoimmune disease happens when the body’s natural defense system mistakenly attacks normal cells. Common conditions include rheumatoid arthritis, psoriasis, and thyroid diseases, which increase with age, particularly among women.
Researchers set out to test the effects of vitamin D and omega-3 fish oil supplements on rates of autoimmune diseases in 25,871 US adults.
Autoimmune disease was reduced by 22% in those who took the increased levels of Vitamin D with or without fish oil. And those that only took fish oil supplements saw disease decline of 15%. More research is needed to better understand the effects of dietary supplements on autoimmune disease, like lupus.
Zinc supplementation may exacerbate rheumatoid arthritis (RA), new laboratory data suggest.
In monocytes from rheumatoid arthritis patients, plasma zinc concentrations and Zip8 expression were increased, and Zip8 expression correlated with more severe disease. Thus, inhibiting zinc influx into monocytes and macrophages could prevent excessive inflammatory responses that occur in diseases such as rheumatoid arthritis – the researchers concluded.
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Pandemic-brain means I have no idea what the date is half the time. Which is how I nearly missed my 11 years sober - today. This last year I’ve said things like, “I can’t believe I’m living through a year like this.” But the fact is I am…living through it. Living to see it. Something I wouldn’t have thought 11 years ago - that I would not only see the year 2021, but see it with my head above the water. Even though I have to be on pain pills again bc of degeneration in my body, I’m being safe & I’m being sane about it. And that’s a strong-man’s (or woman’s, or person’s) feat right there. 2021, I’m here.
Got these insert for my boots- just lace them in, and your boots are now zip ups! Excellent for people like me with weak joints that struggle with laces but love boots!!
NOT A PAID ADVERT I JUST BOUGHT THEM AND LOVE THEM!!
I thought this legend was lacing his boots with cooked pasta
Maybe I am, you don’t know me
These are awesome!
Also, going to give a shout-out to Lock Laces, which are elastic bungee cords you can lace into sneakers, which lets you slip them on and off and tighten simply by sliding the spring-loaded cord lock. No tying or untying!
Welp, 24 years after they first replaced my right hip, it’s time to do it again. Saw the surgeon today & he said, “Looks like it’s time. I got an opening on Tuesday, you want it?” So I said Yes. It’s been popping & rolling worse as the summer has gone on. He said he thinks the joint is gonna fall right out once he opens me up, lol. But I’ll say, 24 years is nothing to scoff at! But, of course, no one likes having surgery. For me, the IV, the anesthesia, the glaring overhead lights in the operating room - that shits all traumatizing AF. TBH tho - as long as there’s no post-surgery nerve pain like with my left one a few years ago (please let’s not have that again) - the surgery day & the day-after will be the worst of it. After that it’ll just be rest, reruns of Bob’s Burgers, the Hogwarts Mystery video game my nephew turned me on to, and recovery exercises for a month or so. Sadly I’ll be missing my baby cousin’s wedding because of this, le sigh. Anyway, I’ll post on here when I feel up to it. With surgery on Tuesday, it may be Saturday before I remember to let you guys know how it went. I’m hoping I’ll be on the good drugs until then…though don’t get me started on how they told me to reduce my pain meds *now*, so I can raise them up again post-surgery. I was like, “But…I’m in pain *now*. That’s why I need the surgery.” Where’s the logic in this? I’m on 4 Norco a day currently. That’s the max and even that, my liver dr is not thrilled about because of the Tylenol in it. Idk what they’re plan is for pain control post-surgery, but I don’t wanna have to beg & plead for pain control that does the trick & doesn’t overload my liver. I do not want to be on Oxy a single day longer than I have to, but I also want proper pain control when I need it. Being in extreme pain is only going to hinder my recovery, after all. So cross your fingers the surgery goes well, there is no nerve damage, & they aren’t picky with my pain control. ✌
I’ve changed so much in the past few months that I don’t know where to begin, but I’ll try.
I have a wonderful psychologist, Rhiannon, who is very encouraging and accepting of my chronic illnesses. I broke off my several year relationship with my toxic psychiatrist and no longer feel the need to have one in my life.
I’ve had a well needed health overhaul. I now exercise everyday from Monday to Friday. I portion control, I drink herbal teas to keep my cravings at bay. I weigh myself only once a month, the week after my period, and reward myself with a cooked breakfast.
I’ve gone from debilitating agoraphobia to learning to run small errands and considering returning to finish my degree at university. I would say that my anxiety is mild now, I’ve learnt from daily meditation and through living by the ACT principle to put my worries in order.
I was in a position where I hadn’t been outside with my husband for several years, but now I go everywhere with him. He accompanies me on my swims and walks, and we have recently started going to the shops together and plan to expand. I have the idea of sharing a coffee with him while out and going on a small bus ride together in the not too distant future. I rely on him more while also feeling more independent and I trust him more than I thought I could.
I’ve lost 2-3 dress sizes and at least 25kgs in the past year. My health is much better as is my sleeping. Despite my arthritis, I am on less medication and am feeling less pain and stiffness.
I have a stronger relationship with my sister and am appreciating my relationships more. I’m a more reasonable, calm person. I am stronger than I ever have been. I am content with my life, I cherish it, and I look forward to the future.
