Who stole my body?

When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!

Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!

Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.

I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.

Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.

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MTX Month Five: Side Effects

This week it will be 5 months since I started taking methotrexate. I’m grateful to say that my overwhelming experience has been positive. The anticipated post-medication nausea, headaches, and exhaustion have been minimal. And my body’s overall response to the medication has been positive. I find myself with almsot “normal” energy on many days, which has been fabulous for my spirits, my life and my business.

But … and you know there’s always a “but” … I do have one side effect that is a bit troublesome. I think MTX is affecting my menstrual cycle. Now I’ve discussed this with both my GYN and my Rheumy, and they both say this cycle distruption is “normal” for a 45-year-old. But I didn’t have the slightest cycle disruption until 3 months ago. Nothing had changed in the last 8 years! So why, all of a “sudden,” am I experiencing complete menstrual chaos?

Everything I find about MTX and menstrual cycles says there is the possibility of disturbance or spotting. What I don’t know is whether it can induce complete menopause or if the effect is amenorrhea with hormones still present in some level. And again, it is frustrating to have the docs both saying … don’t worry, you’re 45 anyway. That seems like a lame excuse!

I know … I know … it IS a minor side effect in the big scheme of things. And it certainly isn’t significant enough for me to stop taking methotrexate. Plus I think of friends who have had emergency hysterectomies for a variety of dramatic reasons when they were younger than I am now. And it was all bound to happen eventually. But I kinda like estrogen … it helps with a lot of vital functions in my body. And I just wasn’t mentally prepared for this … thought I had about five years to wrap my brain around “the change.”

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Could I maybe, possibly, sorta, kinda have RA because I eat gluten products?

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 …

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Visiting Family

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!

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