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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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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My Methotrexate Journey – Weeks 4 and 5

They say that nothing is ever simple. And that’s been the story of the last couple of Sundays (my MTX day) for me. Sunday of Week 4 was pretty good … if you don’t count the two feet of snow that fell the day before. Sunday of Week 5 was pretty nasty … but not really because of the MTX.

I’m still finding that the ginger nearly eliminates the nausea. And that MTX makes me a bit more tired than usual.

But the biggest lesson over the last two weeks has been what my limits are. The snowstorms of February 2010 taught me that I may be able to do something I used to do (like shovel snow for an hour), but that the price I will pay is a steep one. And because I work in a business where happy clients are essential to my livelihood, it’s been a challenge to figure out how to reschedule people and not hurt myself even further.

I have had alternating days of great accomplishment and productivity. Followed almost immediately by days of incredible fatigue and frustration. But somehow this still feels like an improvement.

Last summer when the RA hit my life with full force, I had a very simple rule. Do only what is necessary and take it very slow. My main symptom was overwhelming fatigue. I did have some joint pain, but it was 20% of the issue while fatigue was 80%.

Then when I began to take medicines for the RA, the rules changed. The fatigue levels are improving markedly, and actually that is making it harder. I find that I can do more, but that this is making the pain levels go up quite a bit. So, the new rule seems to be do whatever I can one day but don’t forget I will pay for it the next day with exhaustion and discomfort. And if I go really nuts, I WILL be in pain.

My big challenge seems to be finding a balance of accomplishment and recovery. MTX day / Sunday seems to fit well as a recovery day. However, I clearly need more than one recovery day in the week. This is a very new concept for me … and one that will be another part of this luscious journey.

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Exercise Woes and Gratitude

I am now thankful everyday for everything that I can do. I have clients, friends, and family members who hurt a lot more than I do. But every once in a while I just wish I could still do what I used to do — without pain and/or debilitating fatigue.

Here’s a little history (not that you asked!) … When I was in my 20’s I realized that I got depressed. I took medication and got counseling – both helped.

When I was in my 30’s I discovered that writing myself a “prescription” for exercise was a great anti-depression boost with no side effects. I have used exercise in combination with as-needed counseling ever since. And this strategy seems to hold my depressive tendencies at bay.

Since I started to experience RA symptoms, it has become harder to follow my “normal” exercise routine. At first I just pooped out and said, “oh well I’m just too tired for anything extra.” Definitely not good thinking for my mental or physical state! Since learning about the benefits of exercise for RA, I have re-tooled my approach.

Now instead of 4-5 days a week of hard exercise (90-min. Power Vinyasa yoga or workouts with a personal trainer friend), I am aiming for 5-6 days a week of light to medium exercise. So far that has included 1-2 days of Bikram yoga, a long walk or two, and some sessions with the Wii Fit Plus. I have to plan carefully because my job as a massage therapist is physical too, which tends to wear me out when combined with exercise.

I know this is a lot more intense exercise than many other RA’ers can do each week. And for that I am incredibly grateful. I will keep hanging in there because for me exercise is 75% about my mind and 25% about my body. I’d really like to avoid adding an antidepressant to the ever growing list of meds.

So I guess that despite the title … this turned out to be a lot more gratitude than woes.

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My first big holiday with RA

Made it through Thanksgiving … and I’m really thankful for that. Glad it’s over. I’m also thankful to have learned a few lessons that will surely help me in the future.

Oh my, was this the most tiring experience! I guess I shouldn’t have been surprised. Fatigue has so far been one of the most difficult aspects of RA for me.

I am still adjusting to what I can do, for how long, and how many times in one day. Most of the time I am doing better at setting appropriate limits for myself. For example, I have reduced my massage hours each week by 20%. But apparently holidays make it much harder to set those limits.

I am grateful to say that I didn’t do the primary cooking. That’s never been the way my husband and I divide labor. But I do bake the desserts, and do all the related dishwashing. Not a small task during a holiday with all this eating!

Next time I won’t offer nine people two dessert choices. One would have been plenty! And probably I would have been less stressed with the tried-and-true instead of new recipes.

And when the first chocolate cake I baked was ruined by another’s carelessness, I debated about baking a second cake. I did – and regretted it. Next time I won’t re-make anything – and hopefully won’t need to. This way I hope to be less exhausted when guests arrive!

During a busy day, I often plan a short nap to help with fatigue. But our family togetherness made it hard to stop for naps. Our grown kids live down the street, which we genuinely love. Over the holiday weekend, it meant extra evenings together eating leftovers and playing fun games. With all the people in and out, I didn’t get even a short nap on Thursday, Friday or Saturday! Thankfully I decided to give in Saturday night and head to bed almost two hours early. Next time I won’t compromise the need to rest a bit during the day.

Now I just have to remember to read this before Christmas weekend!!

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Vacation from work but not from pain

Otherwise known as … why I love my memory foam bed!

I have been meaning to blog about my fabulous bed for months now. But it’s seemed like a frivolous topic, so I put it off for more significant things like medications and treatments. However, after spending several nights in a hotel recently … I have realized this bed is very important to me!

Without any idea that RA was in my future, about 4 years ago we upgraded to a lovely king size memory foam mattress from a small manufacturer. It was a bit scary to order a bed from the Internet without every testing it. However, we found a lot of positive reviews online for the middle to higher end models from this manufacturer. And because we ordered direct, the pricing was right in line with our budget.

I had been experiencing some shoulder pain as a mostly side-lying sleeper, and our hope was that the memory foam would decrease my discomfort. And oh happy days! It did! What I didn’t realize since the RA diagnosis was that this bed is one piece of my very important pain-management puzzle.

Memory foam generates some warmth when you sleep in it, so that helps me. This particular model is ventilated, so the heat feels all positive and never oppressive. More importantly, the memory foam allows me to sleep on my back without a myriad of pillows propping me into a comfortable position. And this helps me give my shoulders a much-needed break.

I also found that the discomfort in bed had another downside. I was so uncomfortable that I was forever shifting around during the night. So my sleep was much lower quality, even though we were vacationing and moving at a very relaxed pace. And you know how important sleep is to an RAer!

After a few days on vacation, my right shoulder was screaming so loud that I couldn’t even carry my itty-bitty purse without intense pain. After two nights back on my own bed, thankfully it’s quieting down. Here’s hoping it keeps getting better as I go back to my normal routine.

In case this makes you consider a mattress upgrade, here’s a video from WebMD with some good ideas!

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