People Magazine Names RA Guy ‘Sexiest Superhero Alive!’

Sure, he’s easy on the eyes…but there’s a lot more to 2011′s ‘Sexiest Superhero Alive’ Rheumatoid Arthritis Guy than just his constant smile and cool blue outfit. “When I first premiered, a lot of people in the industry told me that I’d never last,” said RA Guy in a recent interview. “I was told that I needed bulging muscles, and that my costume wasn’t tight enough. Well, I think that the stick-figure look is just fine…and if you want to see tight-fitting clothes, just take a look at me after I finish a prednisone taper!”

Rheumatoid Arthritis Guy is married, has two dogs, and has been living with chronic pain and debilitating inflammation for more than seven years. In addition to being a superhero, he’s just a regular guy who likes to write, draw, and cook. He dedicates this award to all of his loyal fans.

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

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What Is A Rheumatoid Arthritis Flare?

This is a rheumatoid arthritis flare:

January 16, 2011

I woke up crying today.

It used to be that I could alleviate some of the pain by staying still…but today, the exact opposite seems to hold true.

It hurts to sit down. It hurts to stand up. It hurts to lay down.  Pressing my forearms down on a tabletop, placing all of my weight on my right leg, and dangling my left leg does seem to provide a little bit of relief. (What this position could be called, I have no clue!)

Earlier today, I wasn’t even able to walk the few meters from my bedroom to my bathroom. I had to resort to peeing in a jar.

A few hours later, I eventually did make it to the bathroom, and into nice, hot bathtub…but I struggled to get back out. I was not able to towel dry myself, so I had to ask for help. Part of me still tried to get dressed on my own, but I quickly realized how futile the situation was. My husband asked if I needed help, and I accepted without skipping a beat.

I wish there was something that could magically take away all this pain. (I even found myself thinking that I would forever give up my ability to move and walk, if it meant a final end to all the pain.)  But I’m not going to sell myself short. I’m not going to wait around wishing for what “might” happen. I’m going to continue to figure out what works. I’ve already found a little rhythm that seems to be helping at the moment. Stand for a minute or two. Walk for a minute or two. Sit down for a minute or two. Lean against desk for a minute or two.

I’m going to accept my current limitations. I’m going to accept the presence of all of this pain. I’m going to do what I need to do in order to get through this.

But I’m not going to lose hope.

Originally published as: Hope Is A One Way Street

January 17, 2011

I went to see my rheumatologist earlier this evening. Some of the good things about where I live is that not only am I guaranteed a same-day appointment whenever I call, but my doctors also give me both their cell phone number and their home phone number. (Amazing, isn’t it?)

As soon as I reached the door of my rheumatologist’s office, my left leg completely froze up, forcing me to stand still for a couple of minutes. (It’s been doing that about once every ten minutes for the past two days.) A pharmaceutical rep, who was stuck in the corridor behind me, asked if my leg had fallen asleep…as if! By the time I finally took a seat in front of my doctor’s desk, my rheumatologist already knew that things were seriously wrong.

His examination confirmed what my physical therapist has suggested a few days ago, which was they my entire left leg was being completely stretched apart from the hip all the way down to the toes. On top of that, this was not a typical instance of sciatica. The sciatic nerve itself was a victim of circumstances, as the surrounding muscles and tendons pressed down against this principal nerve, causing it (and me!) to scream out in pain. The tap of the rubber hammer against my right knee resulted in the healthy, reactionary bounce. The tap of the rubber hammer against my left kneed resulted in absolutely no movement. Fade to complete stillness. Cue chirping crickets.

On top of this were my “usual” symptoms of rheumatoid arthritis, such as pain, swelling, and numbness in my extremities (both hands and both feet), my elbows, and my shoulders. It’s funny how seemingly minor they became, when compared to the above situation.

I received my first cortisone injection. I supposed to get another one tomorrow. I am starting a 28-day Prednisone taper, my longest one to date. He also offered to insert a needle into my knee in order to extract excess fluid, but left the final decision up to me. Even though I do try to be a superhero most of the time, I must admit that I did chicken out, and passed on this offer. (At this moment, I just don’t feel like I have the strength or the energy to undergo such a procedure.)

As I left his office, I was told that I should start feeling some relief as soon as tomorrow. I sure hope that this prediction comes true!

On my way home, I stopped by the grocery store and bought an assorted mix of junk food. Sure, I’m going to watch my calorie food intake as I once again get back on Prednisone…but all of that starts tomorrow. Today, I’ll allow myself a moment to celebrate returning to the path to recovery.

Originally published as: Rheumatologist Visit

January 18, 2011

Today has been an even rougher day than my past few days, if you can imagine that.

My left leg is seizing up every third step, and I’m unable to place it in anything resembling a normal position. I can barely get around, and when I do I’m completely out of breath. I’ve developed a severe case of acute gastritis (thanks a lot, shots and pills) which is making my stomach feel like it’s on fire. Oh, and did I mention I’ve got a bad case of the runs? (Talk about the absolute last thing that I need to be moving quickly at this moment!)

This combination on all these new symptoms, on top of everything I’ve previously been dealing with, seems almost comical…but I’m not laughing. If my house was even the least bit wheelchair-accessible, I would have already opted for this form of transportation without so much as a second thought.

But as my body continues on its downward slide, I continue to focus on what I do have working in my favor.

First, my rheumatologist and I have already implemented the additional treatment plan that I described in yesterday’s post. Even though I did not see any improvement today, I do know that it will eventually come. Maybe tomorrow will be the day that shows a slight uptick, if not I’ll just keep on moving forward day by day.

Second, I am allowing myself to feel the supportive safety net of friends and family who surround me. I know they are there to help me, and I am reaching out for all the help — physical and emotional — that I need at this moment.

Third, I continue to encounter this flare, probably my worst to date, with a clear mind. This counts for a lot. I am allowing myself to feel different emotions, and am dealing with all of the problems with an increasing sense of tiredness, but so far I have been able to stave off any episodes of serious depression. I think this has helped tremendously. And even though it’s always tries to creep back in, I continue to remove fear from the equation. This helps a lot, too.

I am quite vulnerable at the moment, I know this…but I continue to do my best. (Placing modesty aside I think I’m doing a heck of a job managing this flare, all things considered!) I’m on the path to recovery. I may not be able to see the signs right now, but I know that they are just around the corner. And if this improvement actually comes later rather than sooner, I pray for the continued strength to get through each new day.

I know I can.

I know I will.

Originally published as: Just Around The Corner

January 19, 2011

Yes, I’ve finally got some good news to share!

As of a few hours ago, I finally started to experience a little bit of relief from my current flare. While I am not anywhere close to being out of the woods, this is the first time over the past few days that I can say that things are indeed better, and not worse.

While the most excruciating upper layer of pain begins to fade away, I am left with the lower layer of pain that had not registered up until now. The damage after the storm; the dull soreness of the tense muscles, overstretched tendons, and damaged joints. I welcome this type of pain, actually, because (hopefully) it’s an indicator that the worst is over.

My left leg is once again semi-functional, although my knee continues to take quite a beating…it’s never been this red or swollen before, and I continue to ice it on a regular basis. My feet and hands continue to hurt, but at least they no longer feel like they’re filled with broken glass.

I’m more tired than ever, as I have not gotten a full night’s sleep in almost a week. I have found a position, however, that allows me to lie down with a minimal amount of pain…and while it’s not the most comfortable option available (I’m face-down, with pillows below my waist) it is a major improvement from where I’ve been.

I’m not going to push myself; I’m going to allow my body to recover at it’s own pace. I will be here to support it, though, every step of the way.

And for everyone who has supported me every step of the way during this past week and this past month, I will be forever grateful. Thank you.

Originally published as: Spoiler Alert!

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

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Kate

Kate

Real Profiles of Rheumatoid Arthritis
Photos © Kate

Name?

Kate

Age?

28

Location?

London, England

How long have you lived with RA?

Probably since I was about 20, but I have never had any positive blood markers so it took about 6 years and two operations before I was properly diagnosed (through ultrasound and MRI scanning of my joints).

What advice would you give to someone who has just been diagnosed with RA?

Don’t panic! Also, do whatever you can so you can accept it. It cannot take over your life unless you let it – see it as part of who you are, like having brown hair or being short, and you’ll find it much easier to manage it.

I’m also a big advocate for reading up on your condition. Don’t scare yourself by reading every whacko online article out there but use credible information so you understand the treatment options and can explain about your condition to others.

Do you use any mobility aids?

I use splints for my wrists and a crutch occasionally when my hip plays up but I try to do without.

How has living with RA helped to improve your life?

It’s made me braver. Until recently I was working in a great high-profile government job but struggling to manage that and the arthritis. I was working on so many interesting health issues but at the same time completely failing to look after my own health and suffering flare after flare.

I realised I had to stop fighting against the arthritis and find a career that better fitted by life. Now I’m training as a clinical nutritionist and doing freelance work. I also write a blog about cooking with arthritis and have never been more fulfilled. If it hadn’t been for the illness, I think I would have felt stuck on the treadmill and maybe never discovered another career.

Do you have any visible signs of RA?

I move a little stiffly sometimes but for the most part my arthritis isn’t really visible. Some little keyhole scars on my right hip from surgery to reshape the joint and remove the bursa and I’m about to have some little holes on both sides of my jaw from an operation to sort that out so I can eat pizza and cookies again! Yay!

Can you please describe some of your favorite coping strategies for living with RA?

My husband – seriously he is constantly brilliant and has been incredibly supportive from when I was just a whining girlfriend with random joint pains through to helping me get a proper diagnosis and treatment. He doesn’t ‘molly-coddle’ me (sorry but it’s a brilliant English expression) but he reminds me not to overdo it or try to fight it when I’m flaring.

I’ve learnt it’s better to be honest about how you are feeling with family and friends (little and often rather than a big wave of emotion).

Can you please describe your current medical (traditional and alternative) treatments?

Humira, sulfasalzine and methotrexate – plus a good handful of painkillers.

I find taking plenty of regular exercise and a healthy diet helps too.

Is there anything else about yourself that you would like to share?

I’d love to share my website www.cookingwitharthur.com with everyone. It’s full of healthy, tasty recipes that are easy to cook with arthritis but I’d really value feedback and comments from all those brilliant RA’ers out there. I want it to be a helpful resource so never again does someone with a flare have to live off breakfast cereal (please tell me other people do that too…).

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Rheumatoid Arthritis And Physical Therapy

“Physical therapists, also known as physiotherapists, comprehensively assess RA patients in an ongoing manner. The evaluation of each patient includes an examination of affected joint flexibility, bony alignment/joint deformity, muscle strength, endurance, mobility, ambulatory status, and the ability to perform activities of daily living. It can be a delicate balance to enhance mobility and strength without fatiguing the patient or creating an acute arthritis flare-up. Physical therapists are able to progressively tailor treatment plans to the individual by incorporating periods of activity and rest. Exercises that gently improve flexibility, strength, and endurance help to improve the patient’s mood, outlook, mobility, and the ability to participate in important life events.” From ‘Pathway to Independence: Physical Therapy for Patients With Rheumatoid Arthritis’ by Anne Ahlman, MPT.

Over the past couple of years, I’ve attended approximately 350 hours of physical therapy.

Yes, you read that right: for the past two years, I’ve averaged about half an hour of physical therapy per day. Of course I don’t go each and every day, but usually go two or three times a week…and while most patient appointments last 60 minutes, having practically attained Frequent Flyer (Lifetime Gold!) status at my clinic, I’m usually given an extra 30 minutes during each visit. My longest session to date: 2-1/2 hours!

I’ve had some people tell me that by not taking medicines, that I’m not ‘treating’ my rheumatoid arthritis. (Most readers probably know by now that I’ve been off all meds since earlier this year.) Judgement issues aside, such a statement couldn’t be further from the truth. Am I worried about the possibility of continued joint damage that *might* be caused by not taking any NSAIDs, DMARDs, or Biologics? Quite frankly, no. While I have previously included many of these pharmacologicals into my treatment plan, at the moment I am choosing treatment options that are less taxing on my body, my stomach, and my liver. (Oh, and on my pocketbook!)

At the moment, I am choosing physical therapy to be the cornerstone of my overall treatment plan. And the best part is, it’s working!

I don’t think I’ve underlined enough the importance that physical therapy plays in my treatment plan; and to be quite honest I don’t think I’ve even recognized–until recently–the role that PT has played in my current improved state of health. For the first time ever, we’ve moved away from continually being in crisis mode, and are currently cruising in maintenance mode. It’s a wonderful feeling.

And it should go without saying that my physical therapist, who is a few years younger than me, has become of my most trusted health professionals, one of my best friends, and at times even acts as a stand-in emergency therapist when I’m going through a particularly rough flare. (I don’t think anyone, other than my partner, has seen me shed more tears.)

So what exactly do we do during all of these sessions, that have helped me so much? First of all, let me say that many times the relief that is provided is not immediately obvious; in fact there are certain treatments that actually make me feel a little worse before I feel a little better (in particular, when we have to stretch certain muscles that have tightened too much.) There are periods, however, when the benefits are quickly visible…and while these periods are often temporary in and of themselves, being able to experience a string of breaks from my highest levels of pain–over an extended period–goes a long way in improving my overall well-being, both physically and mentally.

The therapies that we use most often during my physical sessions are:

  • electrotherapy: basically, the use of electrical energy as medical treatment. There are many different electrical currents that can be used, ranging front analgesic currents to anti-inflammatory currents to many others that I myself cannot explain. (Of course, my 10-year old nephew was visiting years back when I started PT, and overheard me speaking about electrodes being applied to me and having the current slowly turned up. He insisted on attending my next appointment, and ultimately did…but was quite disappointed when he never saw me thrashing around on the table, as some big Frankenstein-like switch was flipped!)
  • ultrasound therapy: after the application of gel, a small handheld device is slowly rubbed around the joints that are being treated. Not only does it reduce pain, but it’s also supposed to promote tissue healing. Unlike the electrotherapy mentioned above, ultrasound therapy cases no physical sensation other than the shock of having cold gel applied to your skin.
  • heat therapy and massage: self-explanatory, but must be done with care (especially the massage part) because too aggressive a treatment can actually make things worse…and be careful with the heat part. Once, I actually received some pretty bad burns on my wrists. (Usually I can determine if it’s too hot, but on that particular day my wrists were so numb from the pain and inflammation that I my skin was burning–literally–and I couln’t feel a thing!)

Having done so many hours of physical therapy, I’ve been able to get to know my body better. During a recent visit, my physical therapist commented on how I’m now able to recognize certain problems and complications much earlier than usual, before they reach a critical state. To some this may sound simple, but when the incessant buzzing of chronic pain masks so much of what is actually going on in my body, this is not always an easy thing to do. In addition, I’ve also learned that this is about so much more than ‘just’ my joints. Quite often, the most serious issues, and some of the worst pains, are related to the surrounding muscles and tendons.

It’s also been a great resource when I’ve had complications beyond the ‘traditional’ symptoms of rheumatoid arthritis. For example, every few months I have severe muscles problems along the entire length of my back; this is usually caused by inflammation in my shoulders, which sets off a domino-like chain reaction in my back muscles, all the way down to the lumbar region. Once I reach a certain point, this becomes its own medical situation that requires a lot of time and energy to resolve. I also seem to get a bout of sciatica around once a year, which–when combined with my rheumatoid arthritis–quickly becomes a difficult catch-22 to correct. Yeah, let’s take a condition where it hurts to move (rheumatoid arthritis), and combine it with a condition where it hurts to stay still (sciatica.) I think we have ourselves a winner!

Have you used physical therapy as part of your treatment plan? If so, has it helped?

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

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Is It Over Yet? The View From Inside Here

At 2:25am sleep should have long ago found me. Rotted flowers knows I’m certainly exhausted enough. Pain has a way of doing that to a person. It exhausts you. It makes every breath, every blink seep out of you like last weeks squishy tomatoes. And you would think after 37 plus years of it I’d just be able to suck it up. That’s what society expects anyway. To that…to that as sit here in bed with my laptop on my legs acting as not only a therapeutic outlet, but a heating pad of sorts…to that I say “Fuck You”. Unless you have lived it, I don’t really want to hear your grand insight.

What a way to start a new blog eh? It is what it is. I’m not here to sugar coat it, I’m not here to make anyone feel better about their life by thinking, “at least I don’t….” Yea…great for you, here’s your trophy. Go ahead and put it on your mantle.

And I know that reads like I’m this horribly angry, bitter soul. I’m not. Really. I promise. Ask my closest friends, ask my Sister, I’m not. I don’t hide from the world. I’ve been and done more than most people without a chronic pain/autoimmune based illness have.

Read More: http://awholedivided.wordpress.com/2011/12/08/let-me-have-whats-left/

These are some very moving words–please do yourself a favor, and read the entire post.

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