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.Read More
That’s the word rolling around in my head today … along with a wicked sinus infection. (Whoever says that stress doesn’t make us more susceptible to illness is wrong!) So because I am hurting, maybe the word hurts me a little more than it should. It also hurts because I’m the one in the family who has always been especially conscious of making the healthiest possible choices. And yet that’s what we were told yesterday. I am uninsurable. Truth is I knew this was the case. Hubs was in denial, and wouldn’t believe me … but now we know for sure that it’s true.
Why does this matter? I mean, don’t we have jobs that give us health care? Well actually, no we don’t. I am self-employed, and not really interested in closing down my thriving business even if I thought I could get a job in my 10-years-ago field of expertise. And the industry I currently work in isn’t known for providing benefits – most people working for someone else are independent contractors. And my husband joined the ranks of unemployment in April. He’s been searching for another position diligently, but it’s been a struggle (and that’s a whole other blog post!). So if he doesn’t find something and start working within the next few weeks, we will be uninsured starting in January 2013 when our COBRA runs out.
Because I know you’re wondering, we have a state-sponsored COBRA plan instead of the Federal COBRA. His last employer was too small to be required to offer the Federal 18-month plan. And frankly, we are lucky to have this at all. All $1500 per month of it … ugh.
Knowing all this, we’ve been doing some research and applying for individual plans. The insurance company will call Hubs and ask him a lot of questions about his medical history. But they don’t want to interview me. He kept saying “it’s because you told them what they need to know …” And I reply, “Yes, that I have RA and they know they are going to deny me.” And he kept floating on that river in Egypt .. da Nile.
Then Tuesday night a friend (who also has a pre-existing condition) gave us the name of her insurance broker. It’s the conversation with him that put “uninsurable” on the table. He says there’s a plan with “guaranteed acceptance” that will take me. But will we be able to afford it? Will the job interview Hubs has next week pan out for us? What comes next …?? These are pins and needles I can do without … thank you very much. So cross your fingers for me and all the other uninsurable people out there.
<<political warning>> And please please please remember that voting for state and national politicians who support Affordable Health Care is one of the ways you can do something good for those of us with uninsurable illnesses we did nothing to cause based on our lifestyle.
This is a short, but vital, post. If you’re anything like me, you’ve had more than your lifetime’s share of needle sticks. Chronic pain / illness patients get a lot of blood drawn, right? Well, I’ve been getting blood drawn at my family practice doc’s office for the last few years. But the last time one of their nurses drew my blood, I had a 3″ x 2″ bruise AND a huge lump! If that wasn’t enough, I actually had a needle scratch near the site too. Clearly, this nurse was NOT skilled at venipuncture. And the lump? It was there because she not only punctured my vein as she entered, but then kept on going and punctured the other side of the vein too.
This was of course completely unacceptable. I called the doc’s office to let them know (kindly) that this particular nurse had been sorely lacking in skills. And remind them that it’s especially unacceptable on a patient who is immunosuppressed. They did apologize, and suggested that I request a different nurse the next time. Yup … you bet!
Instead, I decided to do what I had done some years ago. I decided to make friends with some people who do nothing but venipuncture – at a local diagnostic lab location. I chose Quest Diagnostics because they had been processing the blood from the doctor anyway. So I assumed (rightly) that my health insurance would cover that lab. And let me tell you, this was the right choice!
The lab tech was fantastic! Friendly, professional, no waiting, and most of all … really, really skilled at venipuncture. The bruise is only the size of a pencil eraser, if that! Minimal pain and maximum patient satisfaction. Definitely worth the switch!Read More
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!Read More
or … Why Patient Awareness is Vital to Improving Autoimmune Arthritis Diagnosis
I thought I was a pretty aware patient. I’m a massage therapist, holistic health coach, and a yogi. I know bodies, and thought I especially knew my own pretty well. But looking back, I missed some signals.
It’s been 14 1/2 months since I was officially diagnosed with Rheumatoid Arthritis. I’ve been thinking about that diagnosis process lately, because until about a month ago I thought I was one of the lucky ones. My diagnosis process wasn’t long. It wasn’t fraught with speculation about various diseases. None of my doctors ignored my requests or told me that my concerns were in my head. So I thought that I had been lucky enough to have been diagnosed in an early onset stage.
Now that all may in fact be true … but lately I’ve realized that my RA symptoms started long before I even noticed them. Why did I realize this? Because it was this fall (about a year after official diagnosis) that I really started to feel like “myself” again. I realize looking back that three changes happened in my body that I discounted.
1. My entire body temperature felt like it raised about 5 degrees. Instead of always being freezing, I began to be warm or even hot most of the time. I attributed it to many things, but never thought about it being a possible symptom of systemic inflammation.
2. My ring sizes increased half a size at a time when I had lost about 10 pounds. Again, this would have been a warning sign but I attributed it to things other than inflammation. There was also no obvious joint swelling at this time.
3. I began to struggle with constant low-level fatigue, sometimes increasing to temporary exhaustion. I guess my sense of logic kept me focused on the many possible reasons (I had a long list) why I might be over-tired. I never ever considered that I had a disease. The fatigue crept up on my slowly, and was building during a time when I was indeed burning the candle at every possible end. So if you were working full time, going to school part-time, starting a new business, leaving your full time job and dealing with the illness and death of a loved one … wouldn’t you just figure you were tired because of all that? I did.
All three of this things have resolved for me in the last two months. I believe this is due to medications, as well as lifestyle and nutrition changes. When do I last remember not having these symptoms? 2002. OMG – that’s almost ten years ago!
Does this mean I’ve had RA to some degree for this entire time? And what if I had gone to my physician with any or all of these symptoms and asked for help? Sad to say, but I’m pretty sure she would have patted me on my head and written me an anti-depressant prescription. My family even asked me to get some anti-anxiety or anti-depressant meds but I resisted. (Been there, done that. It was helpful believe me!) Somewhere deep inside I knew I wasn’t depressed … it was physical. But even so, I waited until my joints were visibly swollen to ask for help with medical diagnosis.
So here’s my new crusade … when people tell me they are tired all the time, I remind them that it’s not normal to be exhausted. Especially if it goes on for a long time and they are generally taking care of themselves. When people express their frustration at pain, I remind them that it’s not normal to be in chronic pain.
We can all do a lot of things to take care of ourselves – exercise, eat nutritiously, sleep well, hydrate, etc. But when all those things aren’t enough it’s up to us to ask for help! There’s no way to start working towards a diagnosis without first realizing we need to ask for help.
**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “How Can Diagnosis Be Improved?”**Read More