Posts Tagged ‘Exercise’

The Juggling Act: When Diseases Collide

Sunday, November 2nd, 2014

http://www.dreamstime.com/-image394379

***Some parts of this post may be TMI.

I don’t know why the guy in the above picture is smiling. I really don’t.

RA is a very sociable disease. It likes to invite lots of friends along. As RA patients collect new diseases and complications throughout the years, it means new medications, new treatment plans, new diet or exercise changes, etc. etc. etc.

Fine – but what happens when the treatments are incompatible?

I’ve been having some issues with my heart for awhile. My blood pressure has always run on the low side, but I started getting episodes when it would be REALLY low – for example, 80/50. After one of my Remicade infusions, I tried to stand up and had a weird sensation of my heart going BUMP, followed by a feeling of intense dizziness that made me sit down. The doctor called it a vasovagal episode and recommended increasing my infusion time to three hours, which has helped a little. At another, more recent infusion, my blood pressure was so low when I first came in that the nurse insisted on pumping me full of saline before she would even start the medication. (It worked.) I also had a lot of episodes of standing up and blacking out, racing heartbeat keeping me awake at night, etc.

After two abnormal EKGs and one (thankfully) normal echocardiogram, a cardiologist diagnosed me with Postural Tachycardia Syndome, or POTS. This is actually very good news, since it means that nothing is wrong with my heart – just my stupid autonomic nervous system. Not shockingly, it is often associated with autoimmune diseases, including Sjögren’s Syndrome, another fun friend that my RA decided to invite along.

There are medications for POTS (beta blockers are popular), but most cases are manageable with lifestyle changes, and that’s the route I wanted to go. So I started implementing the changes my doctor suggested – increased salt and water, increased cardio, etc.

And that’s when the juggling got fun.

I started drinking two big bottles of SmartWater a day. SmartWater has electrolytes and was recommended by other people with POTS. I took the suggestion of one of these people and started chugging one bottle before I even got out of bed in the morning. It worked. I felt great.

Except…

The added minerals in the SmartWater drove my interstitial cystitis (IC) absolutely crazy. My bladder went berserk, and I could no longer sleep at night because of the urinary urgency and pain. Before this, my IC had been quiet for almost a year – I had actually started to think I didn’t have it anymore, because the treatments were working so well. I couldn’t stand it.

Out with the SmartWater.

So I concentrated on the exercise part, and started a pretty intense cardio regimen. My joints were behaving beautifully, I wasn’t injuring myself, and I felt better and more energetic than I had in years. It worked. I felt great.

Except…

The intense exercise regimen drove my pelvic floor dysfunction (PFD) absolutely crazy. (Pelvic floor dysfunction is good buddies with interstitial cystitis – boy, these diseases do love their friends!) Again, up all night with pain, urinary urgency, etc. I saw the urologist who treats my IC and she confirmed that my bladder was fine – it was definitely the pelvic floor muscles, which were in major spasm. She didn’t have a great solution for the exercise problem, except to say that I should probably knock it off until the muscles relax. She prescribed a nightly low dose of Valium, which is apparently a common treatment for muscle issues like this. I wasn’t happy to add another drug. I also started spending a lot of quality time with my heating pad. (See what I mean about the TMI warning?)

Out with the intense cardio regimen.

That one really stung, because I was worried that the RA would be the obstacle, and instead my joints were perfectly happy. It was working. I felt great. I felt strong and powerful and able to do anything. I loved it, to my surprise. I really did.

Obviously I can still exercise, and will, but it has to be a lot more gentle, which probably won’t help the POTS nearly as much. I can still increase my salt and water, but the SmartWater was so easy, so convenient, and worked so quickly and well. It’s just frustrating.

I really, really, REALLY don’t want to take medication for the POTS. I was not at all happy to have medication added for the PFD. And my RA is actually in drug-induced remission. I want to enjoy this. It has made me so happy.

RA, I think it’s time for you to consider a more introverted lifestyle. These buddies of yours have got to go.

The Stress of Wellness

Thursday, March 22nd, 2012

A strange topic, I know.

I was doing very well for the past several months. It was starting to look very much like remission. I was able to go out and have fun with friends, to enjoy playing with my son, to go for long walks. I was even able to get back to Irish dancing, something I had to give up when I first got diagnosed. I experienced bursts of creativity the likes of which I haven’t had in years.

And you know what? It stressed me out.

For years, I’ve been telling myself, “If only I didn’t have RA, I would do this and this and this and this…” So eager was I to get back to “my life” that when I finally hit a point where it looked like I could, I was overwhelmed. So many possibilities! So many choices! So much pressure to seize the day, to make every beautiful pain-free moment count.

I danced, I sang, I played the piano, I fiddled around with my guitar, I jammed with a friend, I contacted old friends, I hosted a game night, I took long walks, I got errands done… And every night I lay awake, unable to relax, riddled with anxiety.

When you have RA, you know that there isn’t a cure. You know that the good times may not last. Sure, some people have remission that lasts for years. Still, even these people can wake up one morning, suddenly unable to move. I know one woman who had a 25-year remission, and the beast still came back. I’ve also seen this theme showing up on a lot of the blogs I read lately – people whose periods of remission, or something like it, have come to an abrupt end.

Anyway, it may be coming to an end now. I’ve been in something strongly resembling a flare for the past two days – low-grade fever, extreme fatigue, trouble walking, a big ganglion cyst on my left wrist. My interstitial cystitis, too, has been miserable after a very long period of quiet. I had to miss dance class tonight, to my heartbreak. I am hoping that this is just a bump in the road, that it will pass and I will get back to the state I’ve been (sort of) enjoying for the past few months. Stress or not, it has been so wonderful just to feel good.

Hard to say if it’s a flare, because there are other things going on – for example, recent lab tests showed that my adrenal insufficiency has returned with a vengeance, and I know that this can sometimes cause symptoms very similar to those of RA. (More on all of that in another post.) Either way, I’m no longer well. Maybe, oddly, this will relieve some of the stress?

Nah, maybe not.

Inspired

Tuesday, November 1st, 2011

Every day I follow a whole bunch of blogs written by other people with chronic illnesses. Most of these blogs can be found on my homepage, in a sidebar called “Adventures in the Autoimmune World.” Since I don’t tend to leave comments as often as I should, some of these people have no idea how they inspire me, teach me, move me, or make me feel less alone. So today, I thought I’d mention some of the great ideas I’ve gotten from other people’s posts lately.

In honor of World Arthritis Day, Rheumatoid Arthritis Guy presented a challenge: Reclaim one thing. (You can read more about it by following the link.) In response to this challenge, I have decided to work towards taking back something that used to mean a lot to me: Irish dancing. I stopped doing it for practical reasons when I was first diagnosed with RA – I was having problems with my feet and it just became too hard, too painful. I stayed away from my dance friends and dance events because it made me too sad. Later, when my feet started feeling better, I still didn’t go back. I had simply gotten into the habit of thinking that I was limited, and I assumed that I wouldn’t be able to do it.

Now I want to challenge this assumption. It’s true that it might not work out. It’s true that Irish dancing isn’t necessarily the best thing for my joints. But I feel that I gave up too early and too easily. I don’t want to assume that I can’t do it – I want to KNOW whether or not I can.

One of the tools I’m using to work towards this goal is an online game called “Superbetter,” which I also learned about in a post by Rheumatoid Arthritis Guy. It’s in beta-testing right now, and out of respect for the programmer’s privacy, I won’t say much about my experiences so far with the game. In a nutshell, the game provides a framework to help you achieve health-related goals that you set for yourself. You can learn more about Superbetter here.

In this post, Carla from Carla’s Corner tipped me off to another great tool – www.myfitnesspal.com. This is a good FREE way to track your eating and exercise. I’ve only been using it for a little while, but they seem to have a great database of nutritional information. They also have a cool iPhone app, but I don’t have one – I still have a Dumb Phone.

Finally, WEGO Health has declared November National Blog Post Month. I’m too busy right now to do this, but some of my favorite bloggers are trying to post every day this month, and I’m looking forward to reading what they have to say. It’s made me think about participating in blog carnivals – something I generally don’t do. 

Anyway, I’m hoping that all of these ideas will help spark something in me. I’ve been feeling pretty unmotivated lately, and I really want to make some changes. I’m grateful for this community.

Wagon Train Part 2: Let’s Get Physical

Tuesday, December 15th, 2009

In an ironic twist, I have fallen off the wagon-circling wagon.  There are reasons for this, which I may get into in another post.  But for now, I’d like to jump back on and talk a little about my next set of wagons – physical activity.

Exercise is a seriously tricky proposition for a lot of people with RA.  On the one hand, we know that it’s a really important part of maintaining joint health – sometimes it very literally is “move it or lose it.”  On the other hand, when the joints are in flare or already damaged, things can get dangerous.  Another annoying thing about RA is its changeability – the line between just enough activity and too much is razor-thin and seems to move around all the time,  making it hard to stay consistent.  At least it sure works that way for me, and for a lot of other RA folks I know.  So I have to admit that after going SPLAT a few too many times from overdoing, I have erred on the side of doing… well, nothing. 

(Sheepish grin)

I was going to write a somewhat lengthy post that covered all of these different thoughts I’ve had about exercise over the years, but I’m really tired today and so I will get right to the point, which is my plan to change this.  I’m realizing that as time goes by, I’m getting weaker and have less and less energy, and that I’m beginning to have new muscle problems in addition to my usual joint problems.  While I do realize that my illness has a lot to do with this, I want to be proactive about the parts I might be able to influence.  I also want to model something better for my boy than a sedentary lifestyle.  So here are the wagons I plan to start circling:

Wagon #1: Water exercise

Esther WIlliams

(Okay, so I may never be Esther Williams, but I think the picture is cute!)

A long time ago, my rheumatologist said that swimming would be good for my joints.  Problem – my “swimming” is really more like “trying-not-to-drown.”  So then he suggested low-impact water exercise – for example, the Arthritis Foundation Aquatics Program (AFAP), which offers gentle range-of-motion exercises for people with all different forms of arthritis.  I learned that it was offered at several different local YMCA’s, as well as a few other places.  Around the same time, my husband and I thought that it would be a good idea for our son to take baby swimming lessons.  One of our friends had taken her son to the Y, so we checked it out.  And then, in one of those beautiful events of synchronicity that makes you think things are meant to be, we saw it:

AFAP class and Infant Swim, Saturday mornings, same time, same pool.

So off we went on Saturday mornings for a little family exercise.  At first I felt a bit ridiculous, since I was by far the youngest person in my AFAP class.  It was a little awkward explaining to people why I was there, since most of them were osteoarthritis patients.  But it didn’t take long to get comfortable, and I really enjoyed the sensation of being in the water, which is kept at a soothing 90 degrees.  And it was so sweet to look across the pool and see my baby splashing away in my husband’s arms, loving his swimming class.  He was a natural water baby right from the start.  Sometimes he would catch sight of me, and I could see him laughing and saying, “Mama!”  The little old ladies in the class loved seeing him, too.  And I liked knowing that his father and I were being good models for him.

Unfortunately, I had to stop going to class for a loooooooooooooong time because of problems with non-healing wounds and repeated infections – a really unpleasant story I won’t share here right now.  (Fun times, let me tell you - aren’t immunosuppressant meds great?)  Then we just got busy and involved with other things.  But two weeks ago, we decided to start going back.  This time we joined the Y as a family (we were guests before) as part of a bigger commitment to exercise.  The AFAP classes are free to Y members, and the Y also offers free childcare to members while they are working out, so I would like to start going more than once a week.  (That’s if my son, now a toddler, will cooperate with the childcare thing – something we are working on.)  I’m also encouraging my husband to start swimming during the week - he likes it and hasn’t done it in years.  And we’ll keep up our family Saturdays, which are good for all of us. 

Well, I was going to write more – there are at least three more wagons in this particular part of the circle – but to tell the truth, I’m in a lot of pain today, and I’d still like to get something posted.  So I’ll sign off here, and tell you about the others when I’m able.