Joy125’s Blog

Diagnosed in my 20s, I’ve had RA for over 30 years. I’ve been on several RA meds since then — from aspirin and gold shots — to currently enbrel and methotrexate.

By the time the biologics came on the scene, I already had joint damage, and have had foot surgery and both knees and both hips replaced.

I have been fortunate to have had health insurance most of these years, but I didn’t when I was first diagnosed. My job at the time didn’t offer health benefits, and it was quite overwhelming as a young adult, dealing with the pain and uncertainty of RA, and mounting medical bills.

Because of my personal experience, I deeply empathize with all those with chronic conditions that daily struggle with the challenges of living with diseases like RA, and the increasing cost of health care and health insurance. Therefore, I am a fervent supporter of health care reform that will provide affordable, quality health care for ALL Americans. RA no longer needs to be a crippling disease — recent treatment programs and medications can ward off disability — but only if there is access to affordable, quality health care.

Read More: http://community.arthritis.org/Joy125/blog

Since last night, however, my rheumatoid arthritis seems to be making up for its lost time! The pain and swelling is back, as is the crying/whimpering in my sleep.

During that day and a half in which there was no pain, I did not even attempt to disillusion myself with thoughts that my RA was gone (as I have often done in the past.) I found that doing so makes the eventual return of the symptoms that more difficult to deal with.

What did I do during this time? I walked up a long flight of outdoor steps. Slowly. Fully aware of the absence of pain each time my foot touched the ground again. It was a lovely experience.

I woke up, bathed, and got dressed. And then I realized that I did not have a drop of my usual early morning pain and stiffness.

In the bigger picture, 36 hours may seem like a very brief time. This past week, this was an eternity for me. Yes, I knew the pain would more than likely soon be back, but during that window I enjoyed every minute and every second, without fooling myself into thinking that it was a new normal.

I am allowing myself to entertain the possibility, though, of having more of these brief episodes in the future. I think I’ll call them “anti-flares”. I like the idea.

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

And as is often the case with depression, my mind was constantly tricking itself into believing that I was more comfortable staying where I was, than trying to dig myself out of the emotional hole that I was in. “Too difficult”, “not possible” and “I can’t” were phrases that all too often floated around in my head.

So when helping hands were offered, I often found it much easier to snap at them.

“I don’t need help. I can help myself.”

So true, yet so false at the same time.

I could help myself…but I would need help in doing so.

I started seeking the help that I needed.

But even when my therapist would encourage me to work through my feelings and try to move to a better place, even when my therapist would offer suggestions that sounded oh so exciting, I still felt slightly…offended.

How could anyone possibly know the pain that I am experiencing? How could anyone possibly understand what I am going through?

How dare anyone even try to suggest what I should do in order to make things better?

(For a while there, I actually lost sight of the fact that it was I who was searching for answers. It was I who was asking for help.)

And even though I may not have known it at the time, friends and family members were doing their best to help. My therapist and doctor were doing their best to help. I forced myself to see past my anger and depression, and try to realize what was actually going on, even though I did not fully understand it.

So when helping hands were offered, I reached out, and grabbed on tightly.

All the pulling in the world would not have been successful. I had to pitch in as well and do some climbing of my own. Ultimately, I overcame my depression. While living with rheumatoid arthritis is a challenge, living with rheumatoid arthritis and depression is an even bigger challenge. This is just one of the many important lessons that I continue to learn on my journey with rheumatoid arthritis.

I can only hope that should I fall again, that I will once again receive helping hands, suggestions, and words of advice…no matter how annoying they might seem at the time.

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

A few months ago I went through the same routine, feeling all the while defeated by my inability to go to the gym. This time around, I’m approaching things from a different perspective.

For the past few years, yoga has been an important part of my life. After having my knee muscles atrophy (and subsequently losing the use of my knees) during one of my pre-diagnosis flares, and after months of daily recuperative physical therapy, I was determined that I would not let that happen again…so I signed up for yoga classes.

Within a year I shed almost 50 pounds, was much more flexible, and was feeling great. Within two years, I was performing handstands and forearm stands of all types, was hooking my foot into my elbow behind my head while in pigeon pose, and was coming close to perfecting an unsupported (no arms!) headstand. On some days, I would do power yoga in the morning and power pilates in the evening. I was feeling fit, and I was loving it.

And then, a year and a half ago, my rheumatoid arthritis took a turn for the worse. I started missing classes, and even when I did attend I had to incorporate many modifications into the routine in order to get through class. I started wearing flexible ankle, knee, and wrist braces during class in order to give me a little extra support. I started using my forearms instead of my wrists, and started placing more weight on my knees and less weight on my ankles.

And at the end of class, I would feel great (emotionally). However, I would not always accept the fact that I was actually feeling worse (physically).

A couple of weeks ago, after months of struggling, I finally made some difficult but necessary decisions related to my exercise practice. I accepted the fact that my ankles and wrists, even in their best days, are no long strong enough to endure the strenuous weight-bearing positions that are required in my power yoga and pilates classes. Sure, I could continue to attend class and make my own modifications, but at a certain point (that would be now!) my personal routine would not even resemble that of the other members of the class.

So, instead of throwing in the towel, I have instead moved to a private yoga practice – here in the comfort of my own house. Before I start my routine, I lay flat and listen to my body. I take note of which areas hurt more and which areas hurt less (and which areas don’t hurt at all!). I then compare this against the wide range of postures that are available, and perform my yoga routine accordingly. In my core (abs, torso) I can still perform power exercises without problem. In my arms and legs, I can perform only soft, gentle (non weight-bearing) exercises.

What I’ve ended up with is a hybrid power-restorative exercise routine that fits me to a T. I enter into a boat pose, and while I hold it for ten seconds I perform a few open/closed hand grasps. My hand-strengthening exercises, which I have been particularly reluctant to perform as prescribed (my rheumatologist checks up on me during every visit!), have taken on a whole new meaning since I’ve incorporated them into my yoga practice.

Last week, I received a call from the gym asking me how I was doing (they know that I have rheumatoid arthritis, and we’ve come to an agreement that missed days won’t be counted against my prepaid membership). I told them that I was no longer going to be participating in the classes that I took part in for so many years, but that I would still be stopping by to take advantage of the sauna, exercise bicycles, and light weights. Pilates reformer machines are currently being installed (to be launched next month!), so I might give them a try to see if they help me exercise without having to place a lot of weight on my ankles and wrists.

So while my yoga mat is now here in my house instead of in a locker at the gym, this is not necessarily a bad thing. In the past this used to be a sign that I was not exercising. Now, it’s just a sign that I am now doing a different form of exercise. A form of exercise that is less about “pushing” myself, and more about “helping” myself.

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

The Thousand Teeth

I am a thirty-something wife, stay-at-home mom, school volunteer, community group leader, writer, scrapbooker, jewelry designer. Oh yeah, and I have this chronic, painful disease called rheumatoid arthritis that tries to take all that away from me. This journal is all about me trying to keep it all together while still living a normal life. (Plus bonus literary quotes! What’s a former English major going to do without her quotes?)

Read More: http://thethousandteeth.wordpress.com/

Southern Girl with RA
I am a single, proud mom in my 30’s. I was diagnosed with seronegative RA over a year ago. I have been taking methotrexate and Arava without benefit. I am about to embark on a journey of taking antibiotics for my RA. I am excited about the possibility of remission and I want to blog about it as I go.

Read More: http://southerngalra.blogspot.com/

RA (maybe) Mamma
Exploring Rheumatoid Arthritis & Pregnancy
I’m a 29 year old nearly-newlywed – and I have rheumatoid arthritis. I was diagnosed just over a year ago, only a few short months after my wedding. It’s been a bumpy road over the last year, but I am finally at a point where my health is in fairly good shape and I am essentially in remission (meaning I have limited swelling, pain and fatigue). But, that remission comes at a cost. That being some serious medications.

Read More: http://ramamma.blogspot.com/

Hat tip to RA Superb*tch for sharing the link to RA (maybe) Mamma.

Now, if the pain is somewhat moderate and focused on only a few joints, I find this a blessing. Better yet, I find myself at peace…and happy. Just yesterday, when I was at physical therapy, my therapist and I were talking at how well I handled this latest flare. Sure, there were a few moments when the pain seemed too much to bear…but as soon as they passed, I got back on track and focused more on doing the things that I needed to do to take care of myself.

While it often used to seem that everything was working against me during my worst flares, this past week I saw that this is not always the case. At the request of my university, I recently started teaching two of my classes each week online. On those two days, I am able to teach from the comfort of my home office. A transportation strike also gave me a day off on Wednesday, so I ended up having three days in a row in which I did not have to make a physical commute. During those days I had two sessions of physical therapy and one visit to the clinic for an anti-inflammatory injection.

The weather, which seemed almost winter-like for most of the week, turned warm and sunny on Thursday. For once, it seemed like the weather was actually cooperating with my rheumatoid arthritis!

Yesterday, I promised my dogs that I would take them for a walk today. Up until a few years ago we used to go for walks every day. In the past few years, I have no longer been able to take them on daily walks…but when we do go out for a walk, we have just as much fun. My rheumatoid arthritis is still present and a few joints (including my left ankle) still need a lot of care, but in a few minutes we will go out on our walk. Life, even with rheumatoid arthritis, is a beautiful thing.

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

I have to admit, I don’t know what to do. Since I was disgnosed with RA in 2003, I have never had a remission as long as this one. I am officially 34 days without a flare. I am only on my methrexate and Enbrel, and am tapering off my prednisone (down to 5 mg)

Read More: http://rheumatoidblogwritis.blogspot.com/2010/03/remission-guilt.html

Yesterday afternoon, when I was at physical therapy, we once again reached the point where the maximum electrotherapy current was being delivered to my ankles, and I couldn’t feel a thing. In the past, I used to break down right at that moment, as it served as a objective and stark reminder of exactly how much pain I was in. Yesterday, I held my head up high as I remembered this, and told myself that I would get through this episode as I have gotten through other episodes.

Later during the day, I completely lost the use of my left hand for more than an hour. As luck would have it, this coincided with the time when we sat down to eat a meal. In the past, I would have have been reluctant to ask for help and would have instead struggled to cut my own food, resulting in even more pain. Yesterday, I calmly asked for help, and even through I am left-handed, I used my right hand to lift my fork. When a small glass of jello was served for dessert, I propped it up in between my knees and scooped it up with a spoon – without so much as a second thought. I once again felt proud of myself.

And as evening came, I continued to marvel at how well I seemed to be coping with all of my latest challenges.

But when nighttime arrived, and when all of my joints (including my shoulders – those have not been affected in months) were simultaneously experiencing intense pain and inflammation, my wall of cheery thoughts and personal pride came tumbling down. All of a sudden, it was once again just too much to handle.

So I cried. (Sobbed, actually.) My mind raced around, and I barely knew up from down. I tried reminding myself that the worst would eventually pass (which it did), but during those many minutes the pain seemed to be more than I could bare, and all of my connections with the world around me seemed to disappear.

Little by little, they started to come back. My partner ran around in the way he knows how to during moments like those, and plugged in the aromatherapy machine (whose scents always give me a sense of balance during crisis moments like this), heated up a buckwheat pillow to wrap around my ankles, and prepared a cup of hot tea.

So yes, I crumbled pretty hard last night. I used to be ashamed of moments like the one from last night, but not anymore. I got through it, as difficult as it was. And in the end, isn’t this something to be proud of?

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

Shari says:

I’m 35 and was recently diagnosed with RA (although I tried to convince the rheumatologist otherwise!).

For several years I dismissed all the symptoms as nothing more than the stress of being a recently divorced single mother, trying to make ends meet as an administrative assistant by day and a piano instructor in my home studio by night (my own super-hero identity in the making?). Not once did I think my poor health was due to anything other than sheer exhaustion and stress.

So when the rheumatologist confirmed what my family doctor speculated, I was in shock. I went into denial. I tried to convince myself that I could be healthy if I just tried harder to manage the stress better and stuck to a strict diet/exercise plan.

In fact, I think I still am in denial at times: I’m struggling, stubborn, and stupefied.

I agree with others that a diagnosis of RA causes feelings of isolation due to the general population’s lack of knowledge about it (myself formerly included). I’ve always ‘burned the candle at both ends’ to take care of myself and my family, and admitting to myself that I cannot physically do something was/is very upsetting.

But reading your blog and the interactions with others with RA has helped immensely. I’ve laughed a lot, and laughter is the best medicine of all, right?

And now I have all the more reason to finally purchase a grand piano before the age of 40….it’s going to happen, and I’m going to play Chopin on it beautifully, with all my students on stage with me, and my two wonderful children at my side.

Thank you, and best wishes.