I was wrong … really really wrong …

About three years ago when I was first diagnosed with RA, I met a variety of people who told me that going gluten-free might “cure” RA. I didn’t put a lot of credence in their theory. It just didn’t seem possible to me, and in fact it made me kind of mad. How on earth would that be possible? RA is autoimmune, not food-based, right? It’s not a disease that begins because of our habits. And add to that my genetic connection to a parent with RA. The whole suggestion just kind of pissed me off.

But I guess I never completely wrote off the possibility of going gluten-free. Every time someone brought it up, my  response was the same. “Maybe someday but I’m not ready right now.” Honestly that’s just a nice way of saying … give me a good enough reason and I’ll consider if it would be worth it to me. I love bread and all things wheat, so being gluten-free sounded like a small bit of hell right here on earth. But just in case, I eliminated processed breakfast cereals and limited my bread consumption … okay but not pizza or subs or cookies or cakes … at least not THAT much. I definitely found that the more healthy, clean, unprocessed choices I made, the better I felt. But gluten-free … nope, not yet.

Well, about 3 months ago things started to shift. I read a great book hoping to gain some insight for a newly diabetic family member. What? A book about diabetes talked about gluten? Yup – and autoimmunity … and the connection between the two. And I found an article that seemed credible covering the connection between the two topics. Both sources essentially said that eliminating gluten may lessen or remove the possibility of getting another autoimmune disease. And I read another book about the connection between thyroid issues, autoimmunity and gluten too. Hmmm … don’t want any more diseases … so maybe … Here’s where my “switch” or motivation was beginning to flip. More reading and more connections ensued. And I decided to give gluten-free living a try.

Know what really flipped the final switch? Well I just happened to stand on the scale one morning. The previous evening I’d had two small pieces of pizza and a few baked, breaded shrimps. Shocker – the scale showed I had gained four pounds overnight. Nothing else in my food the day before was inflammatory. But four pounds of water/inflammation packed on just from a “moderate” serving of wheat-based stuff. You should know that I’m not super worried about my weight – it’s healthy and I’m fitting in my clothes. That’s another reason why four pounds overnight seemed crazy.

So I figured maybe there is some truth to the connection between gluten and inflammation. Although I don’t suppose I’ll ever know for sure if gluten really would cause another autoimmune disease … or not. If I can hedge my bets, maybe it’s worth a try. And I thought to myself, “let’s give it 4 to 6 weeks and see how I feel. If there’s no change, I’ll just go back to gluten.”

I talked it all over with my husband, showed him the articles, and decided to go for it. And how long did it take to see and feel a difference? Not 4 to 6 weeks but 4 to 6 DAYS! Truthfully, I am still finding things that have changed … and it has been about 4 weeks now. Here’s what I noticed:

• Flexibility (what I noticed first … and as a massage therapist this change is very helpful … plus it’s easier to get on the floor and play with the grandkids)
• Major reduction in morning stiffness, especially in my hands (again, so helpful when I have early morning clients)
• Strength or more muscle soreness (I think keeping my muscles strong will ultimately benefit my joints, so this is important to me too)
• Major changes in how clothing waistlines fit (no weight change, just every single piece of clothing is looser & all muffin tops are gone)
• Less swollen feet at night (I stand for up to 8 hours each day, so this comfort level change is huge)
• Less wildly uncontrollable hunger (I used to say my stomach was really a headless monster but not anymore …)
• Less irritability, especially around hunger (this is huge because I have been attributing irritability to hormone changes … maybe not so much)
• Calmer emotions even in times of great stress (so I’m in the sandwich generation and a small business owner … need to be calmer every day)
• Less brain fog – not “losing words” or my train of thought at all (super helpful and makes me feel a lot less crazy and perimenopausal)
• Changes in muscle definition and general tissue quality (now you can see my muscles, plus they feel looser and less tense to both me and my massage therapist)

I can’t say for sure that going gluten-free will help you with these issues. (But I would wish good changes of any type for you!) I can’t say for sure that I will always experience being gluten-free as a positive force in my life. But I am hopeful … and that makes all the difference each morning when my feet hit the floor.

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.

Uninsurable …

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.

 

The Importance of Good Venipuncture

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!

When everything is going too well …

I haven’t posted since May – mostly because life has been good and I’ve been busy. I did have an experience with the evil skin infection cellulitis, which thankfully resolved itself pretty quickly. But mostly the last few months have been full of big business decisions and happy family times.

Poor car, poor me ...

Until this morning … I was returning home after a lovely yoga class and was in a car accident. On a scale of 1-10 with 10 being the worst, it was about a 3 to 4. NOT what I was hoping for from my day. My car is really a mess thanks to the winch on the other guy’s truck. It’s safe in the towing company’s storage lot for now while I wait for the adjuster to assess the situation. And I am sitting in bed … waiting to hear if I broke any ribs. Or really to find out if my seatbelt broke any of my ribs!

The accident happened in the middle of a string of rainy days, which were already making more achey than normal. Now I am having trouble moving in some directions with this rib pain. Strangely, there’s no bruising on the outside. It’s the perfect example of “But You Don’t Look Sick.”

Interestingly, this accident reminds me how closely connected my core muscles are to my ribs. The hardest part of this pain is what happens when I try to lie down or rise back up from horizontal. I just can’t access my core muscles to help me. But I’m grateful for strong legs and arms to help support what my core can’t. Now I have to be careful not to strain those joints and muscles.

As I said to the x-ray tech, “I feel like a feeble old lady.” And as my spoonie peeps know, we all have been there and we don’t like it at all!

And here’s the rest of the challenge. Much of my ability to see massage therapy clients depends on my ability to move freely. For the last eight years I’ve been able to work pretty darn consistently even with RA, but I cancelled all of my clients today. It’s been quite some time since I’ve had to do that. And as a small business person, I don’t have paid vacation or sick time. So I’m pulling out all the stops to get better soon!

One of the things I always tell my clients is that the MOST important time to eat healthy food is when your body is trying to heal. Your body needs all the fuel for its building blocks to rebuild the injured tissue … and this doesn’t come from cheeseburgers and french fries. It comes from fresh veggies, whole fruits and some lean protein. So although my mom suggested hot cocoa (and I may do that!), I am also making sure I eat super healthy. In fact once I made it back home, I made myself a green smoothie right away. Some part of the reason was to have food in my stomach to calm my nerves. Another part was to get food in my stomach to take my meds. And then the general need to feed myself the healing food!

Send me some prayers and healing thoughts if you would … and I’ll really really try to get back here and update you on my progress. Thanks friends!

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!

Missing My Body’s Signals

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?”**

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!!

Nearly a Year

It’s been nearly a year since my RA diagnosis, and that timeline has been on my mind so much lately. There have been many ups and downs, but generally my sense of the prognosis is a positive one.

I take many more medicines than this time last year. And yet they are making a tremendous difference in my life.

I take many fewer naps, and have been able to be more active in my life. While naps are kind of fun, it’s better when they are a choice and not a necessity.

I hope that (for now) I’ve learned a lot more about where my limits are. I work less, I rest actively more. I have enjoyed and treasured slowing down because that’s brought me time spent with family.

I spend some time on Twitter with a terrific group of folks – most of whom are also living with RA or another chronic / autoimmune illness. This makes me feel empowered and part of a tribe that genuinely cares about each other.

I’ve learned that asking for help is good. And that toughing it out can lead to some serious downsides – typically not worth refusing to ask for help.

Despite healthcare reform, I am more concerned about my husband’s ability to retire since it is his job that provides my health insurance. It makes me want to find time to be politically active … although we’ll see how that fits in my life’s priorities.

I am so grateful for the good things in life – both those I can do easily, and those which take more effort. It’s all luscious!

So Unsatisfying

Sometimes I tell someone I have RA and it doesn’t even register on their face. Like I just told them I have a cold or silver/gray hair. Colds go away in 10 days (if we’re not immune suppressed), but RA is forever.

It’s just frustrating … so I thought I’d share with you.  Even though you didn’t ask.

I wish I could tell the person that the easiest response is, “So what does that mean for you?” They don’t have to know anything about RA to ask me that. And I can choose how much I tell them … which depends on mood and the “need to know” factors.

Phew. Got that of my chest. Thanks for listening.