Posts Tagged ‘Remission’

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.

Bye-bye, Facebook!

Saturday, February 4th, 2012

Just letting everyone know that I have disabled my Remicade Dream Facebook account and page, and I will probably be deleting them after awhile – I’m giving myself a grace period to see if I change my mind. There are a few reasons I’ve done this:

1. I’m spending too much time on Facebook as it is, and am trying to cut back. I already have a personal account that I check constantly. Having a second one just ended up feeling like pressure.

2. I’m really unhappy with some changes to Facebook’s privacy policies and bugs in the new Timeline. On my personal account, I’ve seen things slip through my very tight privacy settings because of bugs in the program. So I’m minimizing my Facebook presence in general. I still have a personal account because, unfortunately, it seems to be how all of my friends communicate these days and I would miss out on too many things if I stopped using it altogether. But I plan to post very little, and definitely nothing I don’t want everyone in the world to be able to see.

3. I’ve friended several different chronic illness-related groups and people on my Remicade Dream account, and I’m finding that every time I do go on there and start reading, I get stressed. There seems to be a lot of infighting, rivalries between groups, and general unhappiness. I don’t want to get involved.

4. I’m trying to take a step back from too much online RA information.

This last one is a tricky one. I’m in (knock wood) a really good place with my RA right now – this is the best I’ve felt in years. I have a strong desire not to disappear entirely from the RA community; I think that seeing people doing well gives us hope. (I know it always gave me hope in the past when I wasn’t doing well.) But I also feel the need these days to reclaim more of my life outside RA, and I want to put more time and mental energy into other things. So I plan to maintain the blog, keep checking in on an online group that has become very important to me, and keep reading the RA blogs I already read – but I don’t plan to seek out any new ones for awhile.

Anyway, I don’t think anyone will really miss the Facebook page. It didn’t get a lot of action anyway.

Medless

Thursday, December 15th, 2011

No medicine

I will explain the title of this post in a minute, but there’s so much else to catch up on. Where do I begin?

This year has been so full of change that it’s hard to know where to start. Those of you who read my blog regularly know that my family and I moved across the country back in September. So far, it has been an incredibly positive change. I can’t even begin to express what a difference it has made in our lives to have supportive family around. I can bring my son over to my parents’ house and go have a long, luxurious lunch with girlfriends. My husband and I can go out on dates. We can get to my doctor and hospital visits without bringing our son or worrying about who we can get to watch him. Best of all, my son is thriving, and his bond with his grandparents is a truly beautiful thing to see. There are negatives, too – we miss our old friends, and the cold weather has been a rough adjustment. But on the whole, it’s been wonderful.

My health has been confusing. For a long time, the only real symptoms I’ve been having are terrible headaches and some weirdness in my fingers. I finally had an MRI and they found damage in my cervical spine, which may or may not have anything to do with the RA. I had two cervical epidurals, a month apart. The first one was amazing – I was totally pain free for almost a month! I really couldn’t believe it. When the pain started coming back, I had the second one. Then, unfortunately, I fell down the stairs a few days later and was so banged up that I couldn’t really tell if it had helped or not. I did know that I was having headaches again, though. I went to the pain management doctor who had done the procedure, and he checked my range of motion and nerve function. He concluded that the epidurals had done their job – the problems in my hands were completely gone – and that the headaches were coming from something else, most likely muscle tension. So I’m going to see a headache specialist in January. On the bright side, he prescribed some Zanaflex to tide me over and it really does help when the headaches hit – looks like his theory is probably correct.

Next came a good news/bad news kind of situation. For the past week or so, I have been experiencing terrible pain and a new level of fatigue. My feet have been killing me, and pain radiates from my back all the way down my left leg. It was frustrating to find myself limping around again – it’s been awhile since I had lower body symptoms. So I saw my rheumatologist yesterday. The good news: my bloodwork looks great, and he couldn’t find any joint inflammation at all. The bad news: he thinks this may mean that I have now developed fibromyalgia. I am very resistant to this idea – I really, really don’t want another chronic condition! Anyway, we are holding off on drawing any definite conclusions for now. After all, I did fall down the stairs a few weeks ago, and we both want to see how I do after some more time passes. In the meantime, I want to see what massage, gentle yoga, and good sleep can do for me.

Okay, so now on to the medless part. My husband and I have decided that we would like to try to have another baby. We talked to the rheumatologist about this yesterday, and he approved. My RA seems to be in a really good place right now. It’s possible that it’s been in a good place for quite awhle, and that the headache and muscle pain were confusing the issue. So right now we are in the process of stopping all of my medications, with the exception of Pulmicort for my asthma, and seeing what happens.

Being medless is weirdly exhilarating, like hang-gliding. I push off from the cliff and hope that my remission-like state holds me up, at least until I become pregnant. (I went into remission when I was pregnant with my son, so I’m hopeful that it will happen again.) The freedom is dizzying – no more med side effects, no more panicking if I forget my pills. There are still vitamins to take, but it’s not the same. My med-free body feels great, healthier. At the same time, I know that like hang-gliding, it’s risky. It’s a race against time, and one that I can’t be sure I will win.

hanggliding

Is This Remission?

Monday, August 16th, 2010

Question mark

I’m pretty sure the answer is “no,” at least in the way I understand remission.  But these days, I am questioning my understanding of remission.  This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.

I don’t think that I am experiencing a “true” remission.  I am still very much dependent on many different medications to keep me working.  We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission.  That may not be a realistic goal for me, although it sure would be lovely.

But am I in drug-induced remission?  This is what I’m trying to figure out.  If I am, it’s not like I thought it would be.  My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone.  Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic.  But that’s not what I’m experiencing.

Here’s how I am: my bloodwork looks great.  My joints look great.  I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either.  I haven’t had a flare that truly knocked me down in awhile now.  I have tapered completely off prednisone and didn’t go into a flare when it was done.  Little by little, I am regaining my ability to do things I couldn’t do before.  I think I really am getting better, but so slowly it’s been hard to notice.  And I didn’t think it would be like that.  I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.

I don’t really know what’s going on.  I still have fatigue, and I still wake up stiff and take awhile to get moving.  Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today.  Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness).  It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore.  Doesn’t being in remission mean that you don’t get flares?

I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this.  I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long.  I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse.   I am still recovering from adrenal insufficiency.  I also have a few other conditions that have been acting up, like asthma and interstitial cystitis.  Am I feeling mildly crummy because of them, and not because of RA?  Sometimes I forget that there are other reasons besides RA for feeling bad.  

I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that.  But I also don’t want to live life like I’m sicker than I really am right now. 

Your thoughts?  What does “remission” look like?