Even though membership in this club isn’t always by choice (they weren’t kidding when they said “lifetime membership”, were they?!), it’s definitely nice to be able to speak with others who also continually go through the ups and downs that rheumatoid arthritis brings into our lives.

I spent about 45 minutes this afternoon in my rheumatologist’s office. My doctor is always good not only for a painful shot of anti-imflammatories in my hip (which I got), but also for a big smile and a a handful of genuine laughs (not just on his part, but mine as well). I think that’s worth a lot, and I feel fortunate to have such a kind person in charge of my medical care.

So we’re putting up a new defensive plan for the next few months of winter (his words exactly), which includes a series of anti-inflammatory injections in the coming days, as well as a return to my full (hair-falling-out) dosage of Arava. (Who says that bald spots aren’t sexy?) This, on top of my daily Plaquinol and diclofenac pills.

He also told me that’s it’s critical for me to take a daily multi-vitamin. This is the first time in more than a year that he has suggested such a thing.

I know my journey back to semi-normalhood isn’t a short or easy one, but at least I’m turning myself around…and am once again looking in the right direction.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Oh, I was also scolded for not wearing gloves…what was I thinking? And when he asked if I’ve been doing my hand exercises, I changed the subject ever so quickly. What can I say? My rheumatologist knows me well.

It has been a long uphill walk this past year. I worked to establish my professional support team with really strong individuals – people who excel in their fields. I worked to truly share with my family members the ups and downs of life with rheumatoid arthritis. And most importantly, I worked to accept the presence of rheumatoid arthritis in my body and in my life. Yesterday was one of those days when it felt like everything was coming together, full circle.

Just the fact that I can label yesterday as a great day in and of itself is a big step forward, as my rheumatoid arthritis continues to flare. In the morning, I stayed in bed for a couple of hours as I struggled to move my ankles and wrists. I surprise myself sometimes, as I awake to find myself performing soft rotations of my hands and feet. The pain in my wrists once again reached new highs, but it didn’t seem so bad. I don’t want to say that I am getting used to this, because I don’t know if one can every really get used to this amount of pain…but maybe I am getting used to it, in a way.

In the afternoon, right as I was walking into my rheumatologist’s office, my left hand started curling up from the inflammation. I’m all too used to this happening, but up until now it’s only happened in the morning or when I am napping. Now, it comes out of nowhere, anytime during the day. A few minutes later, as I responded in the affirmative to all of the questions that my doctor was asking me, I had to lower my head in embarrassment when asked if I have been doing my daily hand exercises. I haven’t. I need to. I will.

Arava, which we stopped a couple of months ago, is going back in. I had forgotten that this suspension was going to be temporary – the idea was to give my body a break from this medicine, and to try to give me a timeout from the hair loss. But it’s reintroduction is not permanent either…we’re going to introduce 20mg for one month, then 10mg the next month, and see how it works in combination with the Plaquenil.

In the evening, we made peppermint hot chocolate and put up all of the ornaments on the Christmas tree – it looks lovely. My sister gave each of us a new pair of pajamas, a tradition that she was introduced in her husband’s family. We listened to Christmas music as we hung the ornaments, and my mother shared the history of all of my childhood ornaments as we pulled them out of the box.

RA flare. Hot chocolate. More meds. New pajamas. Happy memories. It definitely was a great day.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

One of my personal victories during this past flare was getting through it without the use of Prednisone. I have nothing against Prednisone, as I have used it many times in the past. In a way, that was sort of the problem though…during each flare, which was beginning to happen almost monthly, I was taking a Prednisone burst. During my last visit to my rheumatologist, even though my flare was worse than usual, I stated up front that I did not want to use Prednisone this time around.

I know, I know…Prednisone provides great relief to many people. During one of my recent visits with my rheumatologist, though, he spent 45 minutes teaching me about the advantages and disadvantages of corticosteroid therapy. Not that he is against the use of these medicines – he’s not – he just want to balance the benefits with the risks, and does take my age into consideration. I respect his judgment, and have backed it up with my own research.

So we resorted to using three Diclofenac injections over the span of a week and a half, which seemed to work. Previously I used to expect improvements overnight…but this time around I told myself it would take about another ten days for all of the injections to finally take effect. That is exactly how long it took.

The first day that I started my break from blogging, I was frustrated when I continued to deal with the symptoms of my flare. I don’t think I had even thought of this on a conscious level, but only at that point did I realize that deep down I was associating my break from blogging about RA with an anticipated break from living with a RA flare. If only the connection was so easy… Luckily though, a few days into my break my flare did subside.

Which is not to say that I am back to 100%. But If I’m hitting the C range, in the 70’s, then I am more than happy.

Towards the end of last week I left the house without crutches or a cane, for the first time in a long time. Funny thing, all of my classmates started congratulating me on recovering from my surgery/injury. (We’re in the third month of classes, but they have never know me without crutches or a cane.) My brief explanation of rheumatoid arthritis were quickly accepted, and I even discovered that one of my classmates is in a long-term relationship with a lady who has been living with RA for 20+ years. We talked about RA medicines, local rheumatologists, and flares. It was actually sort of fun, and totally unexpected!

In the past, I used to try to forget about my rheumatoid arthritis during these good periods. Now, I am enjoying the freedom that comes of being able to get dressed again in a matter of seconds, and being able to leave the house without crutches or a cane. At the same time, however, I am thinking about what I can do now in order to make the next flare just a little bit easier.

(By the way, what does a person who uses crutches do when it rains? I just thought about that the other day, when for the first time, I was outside with my crutches and it started…raining. Raincoat maybe? I don’t think I would ever use on of those umbrellas that sits on the head like a hat…although I guess it’s best never to say never.)

On a side note, I have had a really bad past couple of days, in regards to my stomach. My NSAIDs and Plaquenil seem to be breaking through any protection barrier that the Omeprazole previously provided. I’m back to teas, boiled linseed, and hot cornstarch beverages. I still haven’t gotten my stomach back into balance…but hopefully this is just a couple of days away.

If Superman is the superhero with abs of steel, Rheumatoid Arthritis Guy is the superhero with a stomach that seems to be made of tissue paper.

Read more about my stomach remedies: http://www.rheumatoidarthritisguy.com/2009/08/stomach-remedies/

And hopefully I can return to actually sleeping through the night. It’s not like I haven’t fought…and won…this battle many times before. Wish me luck!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

• There is a plan.
• I get to know what that plan is.
• I am comfortable talking to her.
• She listens to me.
• She looks at the paperwork I fill out for her.
• She advocated not paying a bill.
• She doesn’t spring surprises on me.
• She gives me information (I don’t have to pry it out of her).
• Once she considers me stable, I won’t have to see her as frequently.
• She’d like to reduce my number of meds.
• She gives me hope that I can get my life back.

Read More: http://warmsocks.wordpress.com/2009/10/24/i-3-my-rheumy/

From a comment left on one of KevinMD’s posts:

… I generally categorize patients in one of four classes: (1) patients who …completely trust their doctor and want the doctor to decide the treatment, (2) patients who want to understand the possible diagnoses and treatments but who want the physician to choose the best, (3) patients who want to understand the possible diagnoses and treatments and make the decisions about treatments for themselves, and (4) patients who want to understand and want to work with the physician to reach a mutually agreed upon decision. I think that the physician should try to understand which category best fits the patient or parents and then try to work with them to reach a mutually agreed upon course of treatment. This is a tall order, I realize, given the generally limited amount of time of interaction between patient and physician.

Read More: http://warmsocks.wordpress.com/2009/10/09/making-decisions/.

“If you don’t set a baseline standard for what you’ll accept in life, you’ll find it’s easy to slip into behaviors and attitudes or a quality of life that’s far below what you deserve.” -Anthony Robbins

Soon after Rheumatoid Arthritis Guy was diagnosed with rheumatoid arthritis years ago, he was introduced to a concept that was both normal and foreign at the same time. What I am referring to is Qol, or quality of life.

Whether I was researching and reading articles on line or responding to questions from my rheumatologist during my monthly visit, this one phrase continued to appear – over and over.

I was continually being told that one of the most important factors of my treatment plan was the need to maintain and improve my quality of life. The funny thing is, no one ever defined for me what this actually meant. Sure, I got asked lots of questions about the duration of my morning stiffness, about the number of joints that were currently affected, and the severity of my pain…but the conversation never seemed to move much beyond these terms.

I haven’t written much about the details of my first year of living with rheumatoid arthritis, partly because the treatment plan that I was on at the time caused so many problems that it actually made things worse. This was before the point where I realized that it was I who needed to take control of my comprehensive treatment plan, and that I was the only person who had the final choice as to what medicines I should introduce and not introduce into my body.

The primary component of my treatment plan was methrotrexate. From the start, it was obvious to me that my body was rejecting this medicine. Since I was new to the whole RA thing, though, I placed my trust in my doctor and continued to heed my rheumatologist’s advice that I give my treatment plan a little more time, that things would eventually get better.

Month after month passed. I basically crossed two days off my calendar each week. Both the day I took my methrotrexate and the day after were a complete loss – so much so that I had to move my dosage day to Saturday morning in order to not interfere with my work obligations. Just like that, my weekends disappeared completely.

During these two days, I could never be more than a few seconds from a bathroom. I had to schedule my travel around this cycle, as the last thing I could dare to do on these days was be on an airplane. On top of the stomach problems, the headaches and nausea were so severe that I couldn’t do much beyond lay in bed and pass the hours.

The other five days of the week were slightly better, but not by much. Just as I reached a point on Friday where I once again felt somewhat fine, I jumped back into the whole routine the next morning when I took my weekly dose of methrotrexate.

Each month, I begged my rheumatologist to please change my treatment, The response I received was always the same. Tough it out, things will get better.

This went on for an entire year. 12 months. 2 days lost each week for 52 weeks. The final price pain on my end: 104 days. Disappeared. And I was not one iota better than when I started. In fact, I was worse.

At I reached my one year anniversary, I asked myself: “What do I want my quality of life to be?” The answers that I came up with had absolutely nothing to do with any of the questions that I had been asked during the preceding year.

I wanted to have my weekends back. I was in my early 30’s, and it just didn’t seem right that my Saturdays and Sundays were being taken away from me.

I wanted to be able to have a mixed drink, or a beer, whenever I felt like it. I was tired of mixing grape juice with mineral water and pretending it was wine. I was tired of only being able to have a sip of champagne during holiday toasts.

I wanted the know peace that comes with not having to constantly be aware of the location of the nearest rest room. I wanted to break the tether to the rest room that I had been living with so long.

And above all I was tired of going, month after month, to a rheumatologist who refused to listen to my concerns and complaints. I wanted a rheumatologist who would work with me, and not against me.

So, I decided that my quality of life was indeed important to me – and that I had every right to define for myself what my quality of life should be.

I stopped taking methrotrexate, implemented dietary changes, and started taking various supplements. (By the way, I also stopped going to that rheumatologist.)

And you know what? I improved almost over night. My rheumatoid arthritis went into complete remission for more than an entire year. I was happier than ever, and every one around me commented on my sudden improvement.

Only by taking ownership of my quality of life was I was able to ensure that it did indeed improve. This was one of the biggest lessons that I have learned on my journey with rheumatoid arthritis, and is something that I will never forget.

How do you define quality of life?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

When my feet flared big time the night before, I figured it would be best to call my physical therapist early the following morning and see if I could be squeezed into an alternative time slot. Luckily, I was told that they could accommodate me at 6pm. (My regular time is 3pm.)

When I showed up that evening, my physical therapist greeted me with a warm smile. When I had originally canceled, we decided that we would use my missed session as sort of trial run, where we were could see how my body reacted to four days with no PT treatments. Since I had to cancel my cancellation, it was obvious to both of us that any plans to reduce the frequency of my sessions were going to have to be postponed.

My physical therapist is a true unsung hero. (I think many people who enter this profession, by nature, have a caring heart and a healing mind.) While most of her patients are recovering from surgery, I am one of the few (if not only) patients going to physical therapy for a chronic illness like rheumatoid arthritis. During out sessions, she suggests things I can do to help when I am at home, and I take time to teach her a little more about the ins and outs of rheumatoid arthritis.

As we appraised this latest flare and came up with our action plan, I told her how bad things had gotten the night before, right around midnight. She told me that in the future, she would be more than happy to meet me at the clinic at any hour of the night for an “emergency” session – all she needed was thirty minute notice by phone. (I haven’t taken her up on that offer yet, but I have found a lot of comfort knowing that this option is available.)

My physical therapist asked me, with genuine concern, what options were available to me for immediate relief during my worst crisis moments. I told her that there are different medicines that can sometimes provide a limited amount of relief from the strongest flares, but that the results are often measured in days, not hours or minutes.

I told her that there was one things that recently has been providing me more immediate relief when I confront some of my most painful moments. It’s not a pill or other type of medicine that I have to take. It doesn’t require me to make any appointments ahead of time. It’s free. And the best part – I can do it in the comfort of my own house, at any time of the day.

It’s called mindfulness meditation.

I have multiple books and audio cd’s related to mindfulness based stress reduction authored by Jon Kabat-Zinn, who is the leading practitioner in this field. (www.mindfulnesstapes.com) I haven’t completed them yet, so I don’t want to write about them right now…but I do hope to share more in the near future, once I am finished.

There is another book/audio cd, though, which has been one of my greatest sources of speedy relief during the past few months.

Break Though Pain: A Step-By-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain, by Shinzen Young.

“In Break Through Pain, meditation teacher Shinzen Young draws on his 20 years of scientific research on meditative states to create an easy, effective practice for pain relief. With him, listeners will learn how to: “Step outside” of pain as they learn to focus attention and awareness with meditation, and enjoy “breath pleasure,” a physiological tool to soothe the nervous system, improve circulation, boost energy, and promote overall healing, release anger, fear, or resentment negative emotions that actually amplify pain, and work with pain as an unexpected gateway to liberated states of experience, and much more.”

If you don’t have any experience with meditation, don’t be scared. No previous experience with meditation is required in order to benefit from this book/audio cd. When I started using these meditations a couple of years ago, I was wide awake and fully aware during the entire hour (approximately) that it takes to go through all the tracks.

When I listen to it now, though – even when my pain is at its worst – I enter a  blissful meditative state, where I am neither awake nor asleep. When I return to full awareness, I often find that while the pain is still there, the absolute worst has indeed passed.

Track 1: How To Use This CD (3:13)

One of the best aspect of these meditations is that they need not all be used in sequential order. This introduction tells you which tracks you can jump to, depending upon which aspect of the pain you want to focus on.

Track 2: Emotional Reactions To Pain (9:38)

This mediation provides me relief within seconds. It is a simple, yet powerful exercise where you spend about ten minutes addressing the different emotional reactions that you might be experiencing as a result of the pain. It could be anger, sadness, impatience, and a wide range of other emotions. On more than one occasion, I have gone through the entire exercise with only one emotion on my mind: fear. Once I become aware of the emotions that I am dealing with, I have taken the first step that is needed to work through the pain.

Track 3: Free-Floating Within The Discomfort (18:59)

The title of this meditation says it all – the goal is to free-float through the pain. I often find that free-floating is much easier to do once I have released my emotions during the previous meditation. I often enter my most meditative and healing state during this meditation.

Track 4: Working With Local Intensity And Global Spread (11:23)

My worst flares often involve a large number of joints. It’s somewhat easy for me to get used to problems in a few joints, but when the whole body gets in on the dance it become a whole other challenge. This meditation has worked wonders when my whole body is in pain. By bouncing one’s attention back and forth between high-intensity points of pain and mid/low- intensity points of pain, it is actually possible for all of the pain points to taper our slightly. (I wouldn’t believe such a claim if I haven’t personally experienced it many times.)

Track 5: Breath Pleasure (9:58)

This is a more traditional breathing based meditation. When all of the meditations are done in sequential order, this one helps to slowly transition your mind and body as it begins to transition back to a state of full awareness.

Track 6: Winding Up (6:58)

All exercises, mental or physical, need a cooling down period. This final meditation wraps up the full session.

My aim is to start practicing these meditations on a more regular basis, and not just wait to do them during moments of crisis.  If anyone else has been helped by meditation, please do share your suggestions and experiences.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

I have realized that when I encounter some of the most difficult moments in my life with rheumatoid arthritis, that I often become extra sensitive to the thoughts of others. It’s sort of silly, no? Just at a time when what I should be focusing most on is myself, I instead find myself worrying about something that is, and will always be, out of my control – other people’s thoughts.

Maybe this is one of my defense mechanisms. Instead of confronting my grave personal issues on hand, I zoom in on what is essentially nothing more than a triviality. (I guess it’s sort of like watching an episode of Entertainment Tonight instead of the BBC World News.)

As I look back at some of my recent posts, numerous examples of this misplaced concern jump out at me.

What are people going to think when they see me walking with crutches? What is he going to think if I don’t offer to carry a grocery bag? Might my rheumatologist think that I am exaggerating the level of pain that I am experiencing? What can she possibly be thinking – why can’t she show a little bit more understanding of what I am going through?

All of these thoughts have one thing in common: I am swapping out my problems for other people’s problems.

What is really bothering me, deep down, are my own thoughts. The sooner I come to terms with this, the healthier I will be.

Yes, I have experienced first hand the hurt that comes when I think someone has not demonstrated what I consider to be an acceptable level of understanding about what it is like to live with rheumatoid arthritis.

But if I stop to think about it, there have been many moments – usually during my worst flares – where I myself don’t even understand what is happening to me.

So might this be what is actually hurting me the most?

Sure, my mind might be able to explain the logistics of the inflammatory process that is wreaking havoc on my body. At the same time, though, my heart might be completely overwhelmed by the emotional struggle that results from the presence of chronic pain and from the losses in mobility.

To put it quite simply, I can be completely lost.

And in order to re-establish my balance, I have to put all of my thoughts and energy solely upon what I think. I can not afford to lose even a little bit of strength by worrying about what other people think.

This doesn’t mean that I will never take into consideration what other people think. I am a social animal, after all. But I now know that when I am facing a true crisis moment, I deserve nothing less than the opportunity to not worry about what other people think – and to instead focus on myself.

As I continue to think about why I care so much about what other people think, I begin to understand that this is perfectly reasonable at times. No one wants to be that rude, inconsiderate person.

Depending upon the situation, the scales between “my thoughts” and “their thoughts” might need to lean just a little more to my favor.

And when it comes to my physical and emotional health, I’ll be happy to tip the scales even a little more in my favor.

But, no matter how far the scales are tipped, I will always make an concerted effort to keep my ears open to true words of advice.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

A couple of weeks ago someone asked me how I cope with the financial concerns that often result from living with rheumatoid arthritis. From reading my blog, she had (correctly) determined that I currently do not have a full time job. This is my answer.

Rheumatoid Arthritis Guy has always had the habit of looking back a year.

It’s not something I do every day, nor is it something that results in me getting stuck in the past. Instead, it’s just a personal game that I have always played.

The rules of my game are simple. I try to think back and remember what I was doing approximately a year earlier. I can’t look at any old calendars nor can I refer to any archived emails to try to refresh my memory.

But I just decided to twist things up a bit.

Last night, as I was at my physical therapy session, I snuck a peak at the display on the machine that I was wired up to. I have always heard the long series of beeps as the physical therapist programs the device, along with references to upper and lower frequencies. 40-80. 90-10. Take your pick. I was fascinated with the fact that this therapy simultaneously delivers upper and lower frequencies, as opposed to one constant frequency I received years ago when my treatment used standard TENS machines.

So, I thought it might be fun to expand the upper and lower limits of the time span that I look back upon. If there’s anything that I have learned recently through living with rheumatoid arthritis, it has been to not only accept change but to have fun with it. So, instead of one year, I ended up with a time frame of one decade and of one month.

One Decade

Ten years ago to the week I walked across the stage at Harvard and received my masters degree in architecture. (This anniversary would have passed completely unnoticed had I not altered the rules of my game.) What a huge turning point of my life this time was! After eight years of college, I was finally heading into the working world, armed with my double Ivy League degrees. (My bachelors degree in architecture was from Columbia – what a blast it was to be an architecture student in New York City!)

I was full of hope, somewhat naive (okay, very naive!) when it came to internal office politics that would soon become a part of my corporate life, and definitely still unaware that my monthly student loan payment would soon be equivalent to a comfortable mortgage payment in many parts of the country.

I left the cold winters of the northeast for the cold summers of (foggy!) San Francisco. My career immediately turned into a dual track which included traditional architecture and user experience design/information architecture. Living in the heart of the internet and software boom, I thought it would be fun to overlay the physical design principles I had learned in architecture school onto the virtual design principles of the emerging field of web interface design.

Right around this time I started experiencing slight pain in my knees and feet. I just assumed that this was the normal aging process, and started taking supplements like glucosamine-chondroitin. I went to the doctors office a few times for x-rays, but they never showed anything conclusive.

One Month

Fast forward nine years and eleven months, and I find myself at the start of May 2009. I had just passed through the worst flare of my life – the exact days will stay etched in my mind for a long time to come. May 1 – May 3. My entire world shrunk down to periods where I took things minute by minute  – literally. Everything that I had previously loved was pushed aside in a heartbeat.

As I rode out (and continue to ride out) this recession, I was actually grateful that I was forced to drop my financial worries and instead spend all of my time and energy prioritizing my health care. All of my medical visits (rheumatologist, psychologist, physical therapist, acupuncturist, etc.) became my full time job – literally.  Last week alone added up to forty hours. Although, instead of money coming in – it ended up flying out faster than ever before. (I guess it would be too much to ask that my unpaid internship at Rheumatoid Inc. also provide health benefits?)

The results of my efforts of the past month are already paying off in ways that a salary never could. The lab results I took to my rheumatologist yesterday show improvement. Looking at my rheumatoid arthritis overall, it has gotten much better. I still continue to have “mini” flares about every ten days, but the severity baseline is trending down. (While these flares that I refer to are no way “mini” in regards to the actual pain and inflammation, they are no longer the life-altering events that they used to be just a month ago.)

I even got a bonus!  I was able to use the presence of rheumatoid arthritis in my life as a portal to get back into the world of art and design that I love. (I’ve even started to enjoy the art of writing, something that I have never really done before. As a designer in multiple fields, my work has always focused on drawing.)

My health will always come first. But, I now know that there is no need to push aside everything that I have enjoyed doing in the past ten years. I need not wait for another consulting engagement to appear, nor I need wait until my rheumatoid arthritis comes fully under control. I can go back to doing those things now, and I can do them on an even more personal level.

And as my health and happiness continue to fall back into balance, I have no doubt that improvements to my financial life will soon follow.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Early on, I think I expected too much from my rheumatologist – and when things did not go well,  is was always his/her fault. But in the end, every relationship involves two people – and if I want to have an open and trusting connection with my doctor, I must be sure that I do my part in fulfilling my half of the relationship. (See, it really is like dating!)

The I-Should-Have-Broken-Up-Much-Sooner Date

With my first rheumatologist, I fell for the “you expert” and “me novice” routine. Although there is a lesson in every break up, and in this one my lesson was that it was I, and not my rheumatologist, who needed to take the ultimate responsibility for my overall health care.

Those of you who have read my 60-Second Guide to RA will recall that there is a section where I talk about my “Team RA”. This is the approach that I have recently adopted, to much success. Just at the corresponding cartoon showed, I am in the center surrounded by health professionals from different fields. At the beginning I used to think that I could take a back seat and let my rheumatologist drive. But now I know that I had things completely backwards.

I used to go to my monthly rheumatologist visit with a lot of unrealistic expectations and misplaced hope. “This time my rheumatologist will finally fix all of my problems.” “This time I will be able to finally get my rheumatologist to provide some validation of what I am going through.” It was always “this time“, and when my needs were not met, I was left to deal with deflated feelings – on top of my physical problems.

In the end, my break up with my first rheumatologist was pretty brusque. After almost a year of having my complaints of serious side-effects brushed under the carpet, I decided it was time to move on. I could no longer continue to receive medical advice from someone who felt that they knew my body better than I did.

For a long time, I felt that it was my fault that I had not spoken up sooner. I know, it was easy (especially early on) to be swayed by the medical and professional expertise that my rheumatologist seemed to convey. But, along with my realization that I needed to take the leading role, came the understanding that I will always be the only person who ultimately knows how my body is feeling. I know what works, and I know what doesn’t work.

The First Date From Hell

Ah, need I say more? (Who hasn’t been on the first date from hell?) A few months ago, I started asking around for recommendations for a good rheumatologist. I asked my family doctor. I asked friends and family. Among the responses I received, one name stood out at the top of the list. My hopes were high. How was it that I had not gone to see this rheumatologist before? With such a strong reputation, what could possibly go wrong?

As it turns out, lots of things went wrong. The worst of them being told by this rheumatologist that I looked good, and that in his opinion my biggest health concern was my slightly elevated blood pressure – not my “RA”. (I put that in quotes because I don’t think he actually believed that I had rheumatoid arthritis.)

After I managed to pick my jaw up from the floor, I told him that I may not be showing signs of permanent joint damage, but that my rheumatoid arthritis had recently undergone a pronounced progression – and that I was experiencing quite a bit of pain and stiffness. His response was that we should wait and see what my lab tests indicated…

Because what I am telling you is not good enough?

Mind you, I had not gone into his office looking for a diagnosis. I already had a couple of notches etched into my RA belt and years of treatment since my diagnosis. I was only looking for a new treatment plan that wouldn’t seem worse than the problem I was trying to fix.

I walked out of his office that afternoon, fully aware that I would never go back in. I never did. (A rheumatologist actually told me that my RA didn’t pose a concern because I looked good???)

As with any bad date, lessons are learned. The first lesson I learned was that I not let this bad experience set me back, and I would continue to look for a rheumatologist with whom I could be both comfortable and happy. I would not settle for anything less, even if it meant that I had to work through the entire list of rheumatologists in my city.

Then I got to thinking, what exactly what am I looking for in a rheumatologist? (Living with RA sure brings up a lot of Carrie Bradshaw moments…)

Someone who could provide me some validation of the pain and suffering that is often caused by rheumatoid arthritis? This might be nice, but if I stop to think, validation is an odd thing – and it often comes from places where we least expect it.

Someone who could acknowledge the emotional pain that I was going through, and provide me a few kinds words of support? That would be great. But isn’t this sort of like asking my electrician to fix my plumbing? The next afternoon I had my first session with my current psychologist. (This has been the best place for me to work through my emotional issues, not my rheumatologist’s office.)

Someone who could give me advice on what treatments I could implement beyond the realm of pharmaceutical options, such as acupuncture, exercise, and diet? Wonderful. But like I said earlier, this is a role that I need to step up to. I often hear many different and (sometimes conflicting) pieces of advice from different health professionals, but it is I, and not my rheumatologist, who needs to learn what works for me.

So what exactly am I looking for in a rheumatologist?

I decided that my needs were much more simple than I had ever thought. I wanted a rheumatologist who would oversee the pharmaceutical aspect of my overall treatment plan. This person needed to be able to prescribe medication and advise me on any possible side-effects. This person also needed to order and interpret lab tests.

My rheumatologist need not be a part-time psychologist, nor a part-time alternative health practitioner.  I would instead look elsewhere for professionals who specialize in these, and other, respective fields. In doing so, I would finally achieve my 360° approach to treating rheumatoid arthritis.

And in order to not fall back into the bad habits of my first relationship, I had to be able to communicate, with firmness, any side-effects or other issues that I was not willing to put up with. If I felt like my voice was not being listened to, I had to have the confidence that I would stand strong.

The Budding Romance Date

Things are going quite well with my current rheumatologist, who I started seeing a couple of months ago. Whether it was luck, or the fact that I walked into my first appointment with a revised (and realistic) list of expectations, I do not know. But, I now have a doctor who is very responsive to the words that come out of my mouth (he initially prescribed me methotrexate; after I told him I would not consider taking methotrexate again, he made a note and moved on), who is very thorough in my physical examinations (he even presses his ear up against my joints as he bends them), and who is very good at explaining things to me (in layman’s terms).

And, as is healthy in any relationship, I will continue to be appreciative of my good fortune – without falling head over heels.

My current rheumatologist asks if I am seeing a psychologist for emotional support. He inquires about my dietary habits. He provides me with both pharmaceutical and natural treatment options for protecting my stomach. He mixes together humor and seriousness, and he take his time (my visits average 30-45 minutes). But most importantly, he does what I need him to do – he controls my labs, he prescribes me medication, he asks about side-effects, and he makes modifications as soon as either one of us thinks that they are necessary.

Another thing he does, which I REALLY appreciate, is that at the end of each session he not only reviews my current treatment plan, but he also tells me the details of my future treatment plans. (My previous rheumatologists have all spoken about the need to not progress to the next step in the treatment pyramid too early – but they all stopped there.) My current rheumatologist tells me the same thing, but then he goes on to tell me a) what the next few steps will be in my treatment plan, to be implemented when necessary and b)what are some of the “emergency” plans of attach that we can use in times of crisis.

Going home with the knowledge that there are other treatment options that are ready to be rolled out (especially during crisis moments), should the current plan become less effective – is priceless. This has provided me with a peace of mind that I have never before associated with my rheumatologist.

So, this afternoon I return for a visit – happy with the fact that I currently have a relationship with my rheumatologist that is working well for me. I may have not gotten here overnight, but it sure was worth the effort.

If your think that current rheumatologist relationship might not be working for you, take a moment and ask yourself: What can I do to make things better?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!