Posts Tagged ‘methotrexate’

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.

Rebellion

Tuesday, December 29th, 2009

jamesdean

 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day - but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.

*Whew* 

I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

Beauty in Strange Places

Saturday, November 14th, 2009

methotrexate

This is a picture of methotrexate as seen under a microscope, from the National High Magnetic Field Laboratory at Florida State University. You can buy a poster of this image here, along with many other cool pictures of things you’ve probably never seen this close before.

I keep this picture around to remind myself that it’s always possible to look at things in a new way.

When I first started taking methotrexate in the spring of 2008, it was the enemy, pure and simple. I had given birth to my son four months earlier, and to me, starting this drug meant nothing but loss. It forced me to stop breastfeeding much earlier than I wanted to, and I knew that I wouldn’t be able to have another child for as long as I was on it. Since I’m not exactly young, I also knew that this might mean closing that door forever. It also meant facing the reality of my RA, something I hadn’t had to do during my pregnancy remission.

This weekend I read the journal that I kept during that time. I was going to quote some of it here, but the feelings are too painful, too raw. I feel sorry for that girl, who was emotional from postpartum hormones, physically and emotionally sore from weaning too fast, grieving the end of a special connection with her baby, frightened of what was to come. When I finished reading the journal, I pulled my baby (now almost two years old) into my arms and kissed his soft cheek. I wished I could go back in time and tell that girl that it would be fine, that he would be happy and healthy and that we wouldn’t be any less connected after he became a bottle-fed baby.

For the first several months, methotrexate was truly rough.  I took it once a week, and that day was always a disaster.  I felt vaguely nauseated and achy all day, with a headache and a funny feeling in my throat, kind of like the way you feel when you’re first coming down with a miserable cold.  When I brushed my hair, large amounts of it fell to the floor.  I was short-tempered and argued with my husband, who was confused by the change in my personality.  Worst of all, I became fuzzy-headed, couldn’t concentrate, couldn’t remember things, couldn’t make decisions.  This also threw my husband for a loop – he was used to a wife who knew what she wanted, felt, and thought.  I would become angry when I tried to read a book I had been reading the day before and found I could no longer follow the plot.  I would tie myself in knots over a simple choice, like Cheerios vs. eggs for breakfast.  I would cry like a baby when I read or heard about anything sad. 

Finally, my husband and I came to the realization that this was simply how methotrexate day was going to be.  Trying to will myself to be different just resulted in frustration and tears, and the effort of trying to go out and do normal things just made the malaise extend to the next day.  So we decided to honor methotrexate day by making it a day of rest for me.  First we moved it to Saturdays.  This made me sad at first, since it would mean missing out on fun sometimes, but it simply didn’t work on weekdays.  Then we developed little rituals to make things nicer.  We would go to the library in the morning, before I took my pills, and pick out a selection of light-hearted books (nothing with a complicated plot) and fluffy, fun movies.  (Since methotrexate gave me the attention span of a flea, we knew I would probably jump from one to the other during the day, so variety was important.)  Then I would spend most of the day on the couch, drinking lots and lots of water.  My husband always dressed our little boy in an “I Love Mommy” onesie (we have several now, in different sizes!) and kept him happy and entertained, bringing him to me for cuddles and kisses when I needed them.  Sometimes, after our son was in bed, I would go to the keyboard and work on my songs.  For some reason, I could focus when I did this, and even forget that I was feeling sick.  Since my emotions ran close to the surface, this was also a way to get them out. 

I did stop losing my hair once I increased my folic acid.  Other than that, not much really changed - I still felt the nausea and malaise, still couldn’t focus or make decisions.  But somehow, methotrexate day had been transformed from something terrible to something almost pleasant, a day to slow down and care for myself.  At one point, I had to stop taking methotrexate for a few months because of an infection, and I actually missed those days.  One day, I found the picture of methotrexate under a microscope.  (I had been doing a search for a picture of the pills, since the ones I had gotten from the pharmacist looked different than usual.)  I started visualizing the drugs not as an enemy or a thief, but as something helpful, maybe even beautiful.

Okay, not completely.  I still would rather not take it – wouldn’t anyone?  In some ways, it still feels like an enemy and is still associated with loss.  But I did learn that it’s possible to find beauty even in a situation that seems completely bleak.  And even though it seemed impossible back at the beginning, I have adapted.

Hmmm… maybe, in some ways, I’m closer to acceptance than I thought…