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”**

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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.

This week it will be 5 months since I started taking methotrexate. I’m grateful to say that my overwhelming experience has been positive. The anticipated post-medication nausea, headaches, and exhaustion have been minimal. And my body’s overall response to the medication has been positive. I find myself with almsot “normal” energy on many days, which has been fabulous for my spirits, my life and my business.

But … and you know there’s always a “but” … I do have one side effect that is a bit troublesome. I think MTX is affecting my menstrual cycle. Now I’ve discussed this with both my GYN and my Rheumy, and they both say this cycle distruption is “normal” for a 45-year-old. But I didn’t have the slightest cycle disruption until 3 months ago. Nothing had changed in the last 8 years! So why, all of a “sudden,” am I experiencing complete menstrual chaos?

Everything I find about MTX and menstrual cycles says there is the possibility of disturbance or spotting. What I don’t know is whether it can induce complete menopause or if the effect is amenorrhea with hormones still present in some level. And again, it is frustrating to have the docs both saying … don’t worry, you’re 45 anyway. That seems like a lame excuse!

I know … I know … it IS a minor side effect in the big scheme of things. And it certainly isn’t significant enough for me to stop taking methotrexate. Plus I think of friends who have had emergency hysterectomies for a variety of dramatic reasons when they were younger than I am now. And it was all bound to happen eventually. But I kinda like estrogen … it helps with a lot of vital functions in my body. And I just wasn’t mentally prepared for this … thought I had about five years to wrap my brain around “the change.”

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 ~~

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!

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.

Who started this paraffin dip thing? The practice started back in the Roman Empire. Romans poured hot waxes on the body before massage therapy. The French also used paraffin to accelerate wound healing by melting the wax and spreading it on wounds. And the British used paraffin wax therapy to treat orthopedic disorders in World War 1 military hospitals.

And here is a more recent definition (more about remelting paraffin in a moment):

Paraffin dip: A treatment for the symptoms of joint and muscle conditions, such as arthritis, that consists of melted mineral wax derived from petroleum applied to a body area. Paraffin dips can be especially helpful in relieving the pain and stiffness of arthritis involving the small joints of the hands when used as a small bath. The hands are repeatedly dipped into the melted, warm wax and the wax allowed to cool and harden around the sore joints. The paraffin is then removed by peeling off and can be remelted in the bath for repeated use.

So what are the practical tips you should know?

First, be sure to consult with your physician if you have questions about the appropriateness of heat therapy treatments.

Now, why would you get a paraffin dip? Whether you do this at home or with a trained spa professional, a paraffin dip is most often used for hands or feet. It will soothe and moisturize your skin, open pores, increase circulation, and offer a chance to slow down during your busy life.

But more importantly for RA and osteoarthritis, paraffin therapy can reduce pain and stiffness around joints by helping remove excess fluid from surrounding tissue. Paraffin is heavy in molecular weight, so it can increase the blood supply to the area being treated which can also be beneficial to joints and soft tissue.

Paraffin treatments are not recommended for people with the following conditions:

  • Hypertension
  • Diabetes
  • Varicose Veins

Especially when you are immuno-suppressed, it is best to throw paraffin away after each use. Do not use paraffin baths at a salon or spa unless you verify that they are not re-using paraffin. A common bath would be a breeding ground for fungus and bacteria. With each dip, small amounts of dead skin slough off into the tub, making the wax dirty and unsafe. More salons and spas are offering single-use paraffin products, which give you an extra opportunity for safety. (See these sites for more info & another take on hygiene)

What if you decide to invest in a home-use paraffin dip? What else do you need to know?

  • Be sure to remove all jewelry prior to treatment.
  • Thoroughly wash and dry the area that is to be treated.
  • Use hand lotion without mineral oil, which can create additional dryness after initially feeling moist.
  • Try the medium temperature first, in case the hot is uncomfortable.
  • Be sure not to touch metal sides or bottom of the paraffin bath. Use a plastic shield for the bottom if it comes with your equipment.
  • When conducting a paraffin dip, relax the body part to be treated and immerse it gradually in to the warm paraffin wax.
  • While dipping the area into the paraffin therapy bath, layers of paraffin wax will build up.  You will want up to five layers of paraffin for maximum warmth to penetrate.
  • Allow it to cool & harden without standing on your feet or using your hands. You can put the hand or foot in a plastic bag and then a specially designed mitt to prolong the warmth and keep from getting paraffin everywhere.
  • If you are doing this without help, you may have to treat one hand at a time.
  • Once the treatment is complete, the wax is peeled off  (can be done right inside the bag with a little practice). Toss the bag with used paraffin in the trash.

Some paraffin has lavender or other scents. Or you can find unscented paraffin at Massage Warehouse. This is the brand I use, and it has always worked well for my clients.

It is also possible to paraffin dip your elbows, but you will need to enlist someone to wrap them lightly with plastic wrap.

Here’s a video with some info aimed at spa professionals and massage therapists that is still applicable when you do your own.

More instructions:

http://www.ehow.com/how_2218771_use-paraffin-bath.html

http://www.ultimatewatermassage.com/home-spa-paraffin-Q&A.htm

Great site from @Farfbaz (thanks Steph!) http://www.therabathpro.com//treatments/general_tips.php

And just so you know, the only thing that qualifies me to discuss this would be my seven years of experience as a nationally certified massage therapist who also offers paraffin dips to her clients. Always use your best judgement, and follow qualified medical advice first.

Week Three (Sunday) was pretty much a non-event, which is maybe why I haven’t blogged it until now (Wednesday). I moved up to 7.5 mg, which is three pills. Only one pill away from the final dose of 10mg/week.

As with Week Two, I did start with some crystallized ginger & ginger tea on Saturday and continued on Sunday.

I took one pill at lunch on Sunday, and ventured out of the house to spend some time with friends. The afternoon brought a pretty good energy level and no real nausea. Sunday at dinner I took the remaining 2 pills, and again experienced nothing significant in terms of side effects.

Now I am wondering if the nausea from Week One was due to the glass of wine I had on Saturday night. I haven’t had any alcohol since, and the nausea is certainly less significant. We are planning dinner with friends this coming Saturday night, but I think I’ll skip the wine … much as it pains me …

And I have to say that the last two Sunday nights have been poor sleeping nights … but not because of MTX. Instead, I have had a sick and coughing husband who keeps waking me with his restlessness. So I’m now wondering if the overtired feelings on Monday are really all the MTX or not.

I have had some mouth tenderness, but nothing that I’d really count as a sore. Just little spots that seem slightly irritated for a brief time. And no hair loss yet either. Hoping it stays that way. I do take 1 mg of folic acid every day to help combat this.

Maybe this weekend will be more “normal” and give me a better idea. But overall, I continue to be hopeful that the side effects will remain small and the MTX benefits will be well worth the effort.

Thanks for listening …