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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.

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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.

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!

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!

As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.

Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.

And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.

Choose left or right?

It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.

What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.

So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?

**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 “Resistance to Rheumatology Treatment”**

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 …

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 ~~

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!

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.