Posts Tagged ‘Diet’

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.

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HALT

Saturday, March 16th, 2013

Halt

There’s an acronym used in self-help and recovery circles – I think it originated with Alcoholics Anonymous. When you find yourself feeling low, you’re supposed to assess yourself to see if you are feeling Hungry, Angry, Lonely, or Tired – H.A.L.T. Any one of this four states can weaken resistance and put people in a vulnerable position.

I’m lucky enough not to have issues with addiction, but I think H.A.L.T. is a useful tool for pretty much anyone. I know that when I let any of those states get too far, and especially if I’m experiencing all four at once (which has been happening a lot lately), I sometimes make decisions that are counterproductive, even self-destructive. I deal with Hungry by grabbing huge handfuls of M&Ms. I turn being Angry inward and end up with migraines. When I’m feeling really Lonely, I isolate myself. And, of course, when I am Tired is when I most resist going to bed on time, much like a toddler. The relationship isn’t always linear, either – being Lonely or Tired can also get me reaching for the M&Ms. When I am feeling all four, I generally make poor self-care decisions – I don’t eat, sleep, or play well, and my mood gets pretty bleak.

I feel the need to add one important variable to this list: Sick. (Also In Pain, but “HALTS” sounds better than “HALTIP”!) When I am sick or in pain, good decisions become really hard for me. My plans and goals fly out the window. I feel helpless and out-of-control. Also, I develop a strange blind spot – I don’t realize at all that being sick or in pain is the reason for my emotional state. I came face-to-face with this yesterday – it was the day after my Remicade infusion, and I woke up feeling amazing. (This doesn’t always happen.) Birds were singing. Colors were brighter. It was like this.

I used to have all kinds of systems in place for times when I wasn’t doing well. I used to take methotrexate once a week, and because I knew in advance that I would be feeling terrible that day, I had a whole routine set to go. But my RA has actually been doing pretty well for awhile now, and even though this is a great thing, it means I get thrown for a loop more easily when things aren’t good.

It’s not just my own Sick that gets me down. I have a five-year-old son, and he’s been bringing all kinds of germs home from preschool. It seems like one or the other of us has been constantly sick for months. We just seem to pass the bugs back and forth, even though I know that’s not how it works. And when my son is sick, I end up home alone with him, day after day, getting run-down and exhausted. Not to mention that thanks to Remicade and the immunosuppression, and his normal five-year-old tendency to need lots of cuddles when he’s not feeling well, I almost always end up sick too. (That’s a topic for a whole other post – probably my next one.)

I’m struggling with how to make H.A.L.T. work under these circumstances. The idea is that you recognize how you’re feeling and take action to meet the need. It’s clear (although not always easy to do) that you need to eat if you’re hungry, sleep if you’re tired, etc. Anger and loneliness are a little bit trickier, but there are still proactive things you can do to address them.

So what do you do when you’re sick, or your kid is sick, and it’s relentless and constant and it’s depleting you in all of the other four areas too? What do you do when the pain isn’t responding to meds? How do you take care of yourself and protect yourself from coping mechanisms that aren’t helpful in the long run?

This question isn’t philosophical – I know people will want to respond by talking about faith or religion or positive thinking. I’m not discounting those things – it’s just not what I’m asking. I mean, what are some practical things I can actually DO in these situations? What are some things I can do other than reaching for the M&Ms or withdrawing into myself? How do you make yourself do the things that you know are healthy?

I really want to know. It’s clear that I need some new tools.

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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.

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