Just when I thought I was going to sleep … a rant took over my brain … because this afternoon for the third time this week someone told me that I probably have celiac disease & that it’s probably the source of my RA. And that going gluten-free will make me well. Oooooh-kaaaaay …
I have been told about this connection (usually preceded by “I don’t know if you’ve ever heard this before, but ….”) more times than I can count. And nearly as many times as someone has suggested that dark cherry juice will also be the “solution I need.” At this point I have already had 2 blood tests with negative results. I have absolutely no celiac or early celiac symptoms. And truthfully, my c-reactive protein and ESR numbers are quite low!
Even so, I am now seriously considering spending $300+ on DNA testing and attaching results for that plus the two blood tests to my chest with a safety pin. Just to get people to shut the heck up about “solving” my “problem” when they aren’t qualified or knowledgable.
I just don’t buy celiac disease as a cause for RA. But I do know one person with RA whose inflammation has improved from being gluten-free.
Maybe I will spend 2-3 weeks gluten-free because it certainly can’t hurt. I have been 80-90% gluten-free for a month before – but this was before my symptoms became active. I lost weight and felt terrific, but who knows whether that means it would influence my symptoms.
Or maybe I will just keep doing what I’m doing. It’s working so far and I’m happy. Now all I have to do is fall back to sleep …Read More
Sometimes it pays not to take “no” for an answer. Especially when the “no” comes from one of your medical treatment team.
I have had pretty decent results from the Plaquenil and MTX. But maybe it’s the Type A personality inside me … I’d like even more results and any reduction in long-term damage I can get. So I’ve been preparing to start a biologic drug. First we did the TB skin test and the necessary blood tests — all negative. I researched and made the decision to go with Humira.
And then the rheumatologist said he didn’t think we should submit the paperwork to my health insurance. Once I picked my chin up off the floor (surprised much?), I got my pushy self going. I had a list of why we should move forward with a biologic drug — all the things that would bring me closer to the old normal life. They sure made sense to me.
The reason why we shouldn’t submit? Because my rheumy just didn’t think the health insurance company would approve this medicine for me. My response? We’ll never know unless we try. No one will punish me for trying and getting rejected. And I just have to know where I stand.
He asked me to wait until my next appointment (6 weeks away). And in the meantime his staff would work on the situation with the health insurer. Sounded like a fair plan to me, so I agreed.
Would you believe this? Four weeks later, and it turns out my health insurance doesn’t require pre-approval for Humira! So what would have happened if I hadn’t been that pushy patient? I would have missed out the opportunity to take a medicine that has a lot of potential to help. I don’t know about you, but if I hadn’t pushed I also would have been sorely pissed to find out later that I could have been taking the medicine all along.
So the first shipment of Humira arrives this week. Thank goodness I’m not afraid of needles!
~~ Would appreciate any hints / tips / tricks though ~~Read More
This weekend I’ll be traveling to another state to visit with my mom. While I’m looking forward to seeing her & spending time together, it brings up three significant stress points as well.
1. The travel process itself
2. Her RA situation
3. My RA – especially relevant to the tasks she needs my help with
I’ll be traveling alone as I typically do for visits to see Mom. Keeping luggage light and easy to manage should help. Even so, I always check my bag so I have less to wrangle during layovers and airport navigation. And it turns out my first day of travel will be a 11-12 hour process. It’s mostly a very long layover, but airports just aren’t very comfortable after a couple of hours. Honestly, just the length of the day is daunting. Thankfully the trip home is more direct and shorter in duration – because by then I am sure to be tired!
I am quite comfortable in my own yummy memory-foam bed. Yet this trip will include two separate guest room beds of undetermined comfort/discomfort. Hoping there will be lots of pillows available so I can prop myself into a comfy position on my back. Side sleeping is still problematic due to shoulder flare issues. But hey, at least I don’t have to factor sharing the bed with hubby into the equation! ;->
My mom has RA that has gone virtually untreated medically due to her religious beliefs. She’s had some type of RA-related symptoms for nearly 10 years, but likely has had the disease for much longer. Her hips, feet and knees are so damaged that she’s now wheelchair bound. Other joints are so damaged that at 69 she’s dependent on nursing care for most of her daily functions.
I can’t begin to describe how difficult it is to see Mom like this. I just don’t know what the next RA-related issues will be for her, but they are bound to be uncomfortable and scary. And that’s probably a massive understatement.
I have chosen not to tell her about my RA diagnosis. I’m not sure how much longer I will keep her in the dark, but for now the choice makes sense to me. I am doing well with my various medications, and perhaps she won’t notice for a long time.
On the other hand, the list of tasks grows longer and longer as we approach the visit. I don’t really slow down or stop and rest enough. And on my last visit the pain levels skyrocketed and I hardly slept at the end of the trip. Since then I have learned to take better care of myself, so I just need to stay strong enough to make sure I slow down to rest during the day. I am still struggling with this at home … so who knows how it will go when I’m with Mom.
Maybe I’m just a big whiner … because in the big scheme of things I’m still doing a lot and mostly pain-free. But every day I still only get so many spoons, and traveling sure changes how they get used. Thanks for listening!Read More