Three Year Anniversary: what are some of my “secrets?”

This week marks three years since my RA diagnosis, and I’ve been tossing around some thoughts lately. 2012 has been a rough year in so many ways, and as time progresses and the stressors don’t change, I can see how much that stress affects me. I also have had a couple of people ask me lately to share what keeps me going … strategies that help me stay feeling well.

Challenges: My main challenges are pacing myself and managing stress. I am a busy, doing, going and never stopping kind of person. This can be a little too much for my body sometimes. And my main stress relievers are exercise and my work (more on that later) … not exactly still activities. So I have to force myself to slow down and relax a LOT.

Strategies: I switched last year to a more gentle form of exercise – water exercise. I love it and find it to be the perfect pace. Plus I can ramp up or down depending on how I feel – and no one in the pool is judging me because it’a all underwater! (same goes for swimsuit-related self-consciousness …)

Strategies: I have a much lower stress career now than I did 10 years ago. That’s massage therapy versus advertising. Although I believe in good customer service and meeting my clients’ needs, I also have a wonderful group of clients who encourage me to take care of myself first so I can take care of them more effectively. I don’t have a boss telling me I must perform. I judge my schedule based on how I feel at the time. Even though I book people ahead (sometimes several weeks out are full), I can skip filling in the spot when someone cancels and give myself a break when needed. Little things like that make a big difference for me. I also work in a beautiful space that I completely designed. I play peaceful music that I love. I talk with chatty clients, or I have long breaks of silence where I can focus on breathing and the meditative nature of giving a massage.

Challenge: After a 10-year massage therapy career, I think I’ll probably taper off over the next 5-7 years. I’m nearly 50 now and ready to shift into another career – health coaching! I am passionate about this field, and especially about helping people who have chronic pain and inflammation like me.

Strategies: Still working on how to do this … but I just know that if I plan that will help. I have a few expert friends that I’ll reach out to for ideas. This is a big part of my strategies – don’t try to “go it alone!” Asking for help always offers better solutions.

Challenge: Managing medications

Strategies: Get a smart-phone enabled medication reminder app. It’s my savior and reminds me to take my meds twice a day. Plus once a week. Plus every other week. Ayyyiiiyii … I have enough in my brain without stressing about compliance. And consistent medication is a big help to my overall wellness. The meds reminder also helps me remember any non-standard meds I have taken, like antibiotics for example.

Challenge: I’d love to say that I can eat anything I want and never be affected … in my waistline or otherwise. But that would be a big, fat LIE. I have had to revise my perception of “comfort food.” If I eat a bundle of junk food, sugar or even too many carbs … my body gets angry. If I gain weight, my clothes hurt (literally … tight waistlines are yucky!) and more significantly my knees ache. My hands will also swell with too much “discomfort food.”

Strategies: Well, as a health coach, I know a lot of great information. I even know how to take baby steps and put it into action. And starting about 20 years ago, I began this journey toward making better health choices. 20 years?? That’s long journey … why so long?? Well, because I believe the journey never ends. There are always changes in our bodies and in nutritional theories. For example, three years ago I would never have truly considered going gluten free. Now I’m considering it pretty seriously. I work every day to eat clean – whole foods that are primarily home cooked with love. I read food labels and know what ingredients make my body hurt. I know how much I can “goof off” before I get the diet smack down. My morning starts with a nutrient dense smoothie, and my afternoon snack is often a fantastic green drink I found recently. I avoid “discomfort foods” but I also don’t allow stress about those foods to overwhelm me … that would produce the same result as eating a bite or two of the food.

Challenge: SLEEP! Some nights I have perimenopausal symptoms (extra uncomfortable heat), and others my husband snores louder than usual. Often I get achy in the middle of the night and can’t find a comfy position.

Strategies: Keeping a standard sleep schedule all seven days of the week helps me a lot. Same time to sleep and same waking time means my body isn’t surprised every night – less change equals less stress. I also found a cool thing a few weeks ago called a Spoonk. It’s an acupressure mat that I lie on for 10-15 minutes before sleeping every night. It seems to calm my nervous system down and deepen my sleep. I also think that better sleep is helping my digestion – an unexpected bonus!

Well, now these aren’t secrets anymore … you know them too! Hope they help you make your RA easier to manage.

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The Humira Incident

I really do love Humira. It has helped me huge crazy lots. All the other medications took me from 10% of normal to 70% of normal, which is pretty great. But Humira has brought me to 95-100% of normal. And I am so grateful!

On the downside … the injections. My rheumy showed me the first time. Two weeks later when it was up to me, I didn’t remember how the pen worked. I ended up with a massive bruise, and a slightly bruised ego too. And after a few injections, I discovered that injecting into my belly is not for me. After some hints and tricks from another RA patient, I felt like Humira injections were mastered. And everything has been just ducky for nearly a year.

Today I had a first though … so I thought I’d share. Just because.

I was in the middle of cooking this afternoon and I realized that I had twice ignored my iPhone reminders for my injection. I was afraid I’d forget my dose. So I quick ran upstairs for a bandaid and grabbed my supplies (alcohol swab, injector pen, etc.). In the middle of this cooking endeavor, I stopped to do my injection.

Probably I shouldn’t have been rushing. Probably I should have stuck to my usual schedule. But either way … I had a little incident.

When I injected the Humira today I must have hit a blood vessel because I had seriously spurting blood for about 30 seconds. That’s never happened before. It was a little freaky … maybe even a bit scary. Thankfully the blood clotted pretty quickly. And hopefully I won’t have much of a bruise. Next time I will look for blood vessels close the surface of my skin …

All in the fun day of an RA patient!

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I bought turtlenecks today!

I bought three new turtlenecks today. Except for one purchased last year with outdoor activities in mind, these are the first turtlenecks I’ve wanted or been able to wear in 7 years.

So who cares and what does this have to do with RA? Well, about 7 years ago I noticed that entire body temperature had increased a few degrees. Not hot flash style increases – I’m too young still & this was 24/7/365 change. I was more likely to have a tank top on under a sweater than a turtleneck.

The change seemed permanent and I donated or pitched my turtleneck “collection” which had been extensive. But as fall and winter have approached this year, I am cold. Not just chilly on the edges, but cold cold cold.

My theory is that about 7 years ago RA started to generate subtle inflammatory changes. They were inflammatory enough to raise my body temperature. Now that I am taking the bundle of RA medicines and my disease has become better controlled, the inflammation has lowered. It just doesn’t seem to be heating me up any more.

I’ve been thinking that RA was busy building inside me much earlier than I realized and this is also a bit more confirmation.

So I’ll wear and enjoy these turtlenecks — at least until I start hot flashing in a few years!!

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Being a Pain in the Rheumy’s Butt

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 ~~

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Medication Updates

Y’know back in the day … the most intense medication I had in my cabinet was OTC NSAIDs or some cold medicine. There were a lot of vitamins and minerals around the house … and I took them regularly. These days … it’s a whole different story!

One Rx NSAID and two DMARDs later (and Rx vitamin too) I have one more decision to make. My rheumatologist believes in treating this (luscious) RA aggressively and I agree with him. So we are going to add a biologic on top of everything else. But which biologic is now the big question?

I have to consider my health insurance company’s tiered formulary, because a biologic moves out of the Tier 1 drugs I now take. The rheumy suggested one drug that’s in Tier 2 and another that’s in Tier 3. And two more that aren’t in the formulary at all. Picking my battles, I feel like I should start with the Tier 2 drug … considering it’s more likely to be approved.

Tier 2 drug: Humira
Tier 3 drug: Enbrel
Non-formulary: Orencia or Remicade

I’m also looking at some of the practicalities of my life. I’m not needle-phobic although I’ve never had to inject anyone else much less myself. So maybe an injectable would be okay. If I can’t do the injections, then my husband will be another option. Although he swears he could never do it … and I tend to believe him! I also like that Humira is bi-weekly or weekly.

At 45 I still have good veins in hands/arms. So it wouldn’t be hard to do infusions, but why start there yet? I also know that I don’t sit still very well unless I’m completely exhausted. So the idea of sitting for an infusion doesn’t seem like a lot of fun. I’m also a small-business owner and making money depends on my presence. So that’s another nail in the infusion coffin.

I’m really leaning towards Humira, despite all the dire warnings and possibilities of major side effects. There isn’t a single biologic that doesn’t have similar warnings. Additionally, I have read some very positive reviews of how much it has helped RA patients. And the alternative of joint damage just isn’t an option I’m willing to take lightly.

If you were in my shoes (what you know of them), what would you do? Thanks!

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