PFAM: How do you recharge?

*GASP* A new post! I can’t believe how many months it has been since I posted anything. Sorry I have been MIA lately, I know I need to post an update soon. Life has been throwing too much at me to handle already, and I just haven’t been able to find the time and energy to blog. I’m doing ok, and will post an update as soon as I’m able to. In the meantime, Duncan over at http://duncancross.net/ sent me an email last week asking me to submit a post for this month’s Patients for a Moment blog carnival. This week’s topic is “how do you recharge?”  Thanks for jerking me out of my blog somnolence, Duncan!

 

How do I recharge? That’s a good question, because sometimes it feels like I’m not managing to recharge at all. This question is also awfully broad in scope – are we talking mental or physical recharging? There are some things that I find work for me (sometimes)… not always, not always completely. A lot of my efforts to recharge are grounded in my efforts to let go of my troubles in the first place.

So, here we go, in no particular order:

 

• Yoga/Meditation.

I try to go to yoga classes at the gym, because I feel like I get more of a relaxation when someone else is leading the class. I don’t have to think about anything that’s going on in my life – just do whatever stretches/breathing I’m told to do. I think I disconnect from the troubles in my life best when I’m in a yoga class or a guided meditation. Of course, this option requires me to be physically able to go to yoga that day. Meditation is easier since I can do it lying down just as well. Online/DVD/CD versions of “instructors” work well for me too. Basically, I just need someone else to take the reins and tell me what to do so I can let go of even that for a little while.

 

• Books.

I’ve always been an avid reader, but sometimes I think that my chronic illnesses have made me even more inclined to pick up a book. If I can lose myself in someone else’s life then I can focus on their problems and forget about mine for awhile. Sometimes,  I sit for hours – and then get a shock in my joints when I go to get up (whoops). For those few hours, though, I was able to forget about everything and I find that temporary release of those problems help me recharge.

• Movies/TV.

These, of course, are similar to books. For me, this doesn’t work nearly as well. I find my mind wandering off, and I just can’t focus as well. I think that might be more of a preference and habit thing, and I know that TV and movies work well for a lot of my friends. When my brain fog is really bad, I much prefer movies and TV because I don’t have to keep track of such a complicated plot and numerous characters.

 

• Aerobic exercise.

This one, like the yoga, depends on my physical ability that day. If I’m capable, even a few minutes on the elliptical seems to be worth it for me. The exercise releases endorphins, and that really helps. There’s also something about sweating away the day’s troubles that helps me to let go of things that are eating at me. It’s almost as if I sweat them out of my mind.

• Pretty Plants.

Much to my mother and grandmother’s chagrin, I am absolutely not a gardener. Even when gardening wouldn’t have required all the sun-proofing procedures that being outside does now, I just never enjoyed working out in the garden. However, pretty plants seem to help my state of mind a lot. (Shocker, right?) On a philosophical level, I think that the plants remind me of seasons, and that things get better and worse in cycles. It’s a nice reminder that even if today is an awful day, tomorrow might be better. Or the next day. Or the one after that. …. Eventually, things end up on an upswing again. Plus, they’re just … pretty!

 

• Vacations.

I find that the occasional vacation day helps me out a lot more than long vacations do. I’d rather have a 3-day weekend every couple months so that there’s something to break up the tedium, something to look forward to. That one day goes a long way to reviving flagging spirits and low energy levels. To take a week off, I have to work every day for months on end, by which time I’m completely worn down. Of course, if I had enough vacation days, I’d do more of the weeks off.

• Tea and a cuddly blanket.

Ok, this sounds silly … but somehow if I wrap a cuddly blanket around myself and make a nice cup of herbal tea it tends to make other things sort of soften around the edges. They don’t go away. I’m not distracted enough the way I am with a book, but they don’t eat at me quite as much. Of course, this is best paired with the book, plants, music and/or TV/movie option.

• Music.

This is such a huge one. I can’t even be more specific, because the type of music and all depends so much on what I need and why I need to recharge. Mental or physical strain? Do I need to be social or lock myself away to achieve it? Either way, music is pervasive and with the advent of wonderful little mp3-playing devices, I love that it’s always possible to get away from the world for a few minutes as needed. It’s my easiest, most flexible option.

• Group/friend therapy.

I’m very lucky to have reliable friends – both in real life and in the internet worlds who are always around to support me. Sometimes there’s nothing that works better than to discuss life’s trials and tribulations with someone who can be supportive and cast perspective. My friends always know what I need to hear – and aren’t afraid to tell me even when what I need to hear isn’t necessarily what I want to hear. Even when nothing is particularly wrong and I’m just feeling low, a lunch/dinner/coffee/skype date with a good friends always lifts my spirits.

 

• Treats.

I’m not a big eater. The gastroparesis doesn’t help this at all. Plus I’m (still) trying to lose the prednisone and lyrica weight, so I don’t tend to indulge much in treats. It seems silly but treats, either comfort foods or something so decadent I that I rarely indulge in it, are often all I really need to put me back on feet.

I’d love to hear what you all do to recharge. I’m always looking for new, wonderful ideas!

I promise to get an update post up as soon as I can manage it. Sorry for my absence, friends.

Tales from the Emergency Room Crypt: Spinal Tap

The lovely Selena (you can find her at Oh My Aches and Pains) is hosting a blog carnival. With Halloween on the way, she has aptly chosen the topic “The Fright Files: Stories of Medical Mistakes.”

I think almost everyone who has been diagnosed with a chronic illness has at least one horrifying story of how something has gone majorly wrong. If we spend that much time getting complex medical care is it statistically inevitable that something is bound to go wrong at some point? I hope not, but with diseases that require a lot of juggling and refuse to follow a standard pattern…. That being said, many of our experiences, like mine, can be chalked up to nothing more than negligence or disrespect for patients.

When I first became ill, my lupus completely failed to present like a textbook case. This is a common occurrence, which is why so many people are not diagnosed for years on end. In any case, one day I found myself so intensely dizzy that I couldn’t stand up on my own without tipping over. My mom freaked out when this wouldn’t stop, and as it was after hours by then, rushed me off to the Emergency Room.

We waited for hours to be seen, but were eventually led back to a room. A doctor came in and asked a few perfunctory questions. Then she said  she needed to do a lumbar puncture to see if the spinal fluid could give us any answers. I thought she’d tell us to go see someone in the clinic the next day, but she said that she didn’t want us to wait that long so she would do the procedure herself – immediately.

I don’t know if you’ve ever had a lumbar puncture before. I was told to basically curl up into a fetal position. The first step was to numb my skin. Then more anesthetic was injected along the path that the needle would go. As that anesthetic went in, I informed them that my skin hadn’t numbed since I could feel that needle. I was told that sometimes it takes awhile for the numbness to set in. I had to wait a bit for the numbing agent to work, and then the doctor came in to do the procedure.

That anesthetic didn’t do a damned thing. I felt that huge needle boring into my spine.

It hurt. Like hell. A needle going into the spine is a completely indescribable feeling. As I write this, I can still feel that needle going in and I’ve gotten all squirmy. I’ll never forget that feeling as long as I live. The doctor just told me shush and that I couldn’t actually feel it. Apparently, I was just scared and so I thought I could feel it. Right. I was awfully tired of this “it’s in your head” sentiment as I heard it often in the days leading up to my diagnosis. I told her very firmly this was not the case, and that I really could feel the needle going in. She told my mom that was I was just scared. She asked my mom to hold me still and quiet me down so the doctor could focus on the procedure.

Now, I am a strange person who can’t scream on command. I’ve never been able to scream on command, and as far as I know I have never before or after screamed at all. Oh but at that moment I was screaming bloody murder. To be fair, it kind of felt like I really was being murdered. Another doctor came rushing into the room to see what was happening. I managed to tell him in between sobs and whimpers. It was not pretty.

It turned out that the doctor who had been treating me was a resident. The new doctor, who turned out the be an attending, had me checked into the hospital to do the puncture the next day.

When I was checked in, I told the attending on that floor that I didn’t want that resident anywhere near my room. She worked in the ER, so there wasn’t really any reason why she should be treating me once I was checked in but I wasn’t taking any chances. I guess this attending (and perhaps the one in the ER) must have logged my complaint somewhere. The resident showed up the next day absolutely livid. She informed me, in a tone that belied her words, how sorry she was that the procedure had not gone well. The anesthetic had been given properly, so she wasn’t to blame. However, it was a hard procedure, and I shouldn’t have made such a fuss, because now she was in big trouble. Didn’t I know that a student has to learn?

I informed her that learning to do something on a patient shouldn’t mean torturing the patient. Moreover, if she wants to learn to treat patients, she ought to learn the basics first: listen to your patient, damnit! She should have listened to me when I told her that I could feel it, instead of just shushing me. My complaint wasn’t about how she did the procedure, it was that she had no respect for me as a patient. She ought to learn that first. I didn’t mince words. She flounced out of the room in a huff. Sometimes I wonder whether she ever got anything out of that experience or she just wrote me off as a horrid patient that got her in trouble for no good reason. One can only hope..

In any case, they finally did the procedure under general anesthesia, because there was no way in hell that I was going to allow that procedure to be done while awake. Ever again.

After all that, the results from the spinal fluid came back negative. Figures.

The Stomach Who Can’t Be Moved

It seems my body is less than satisfied with one diagnosis. Lupus wasn’t enough so it developed fibromyalgia. When that wasn’t enough it developed gastroparesis.

Simply put, having gastroparesis means that my stomach muscle doesn’t contract properly and I end up with food stuck in my stomach for hours at a time. Often, this means that I just throw it back up because my body gets confused. I have issues with acid reflux because the food and acid get stuck there. It also means I’m never hungry and am almost constantly nauseous.

It took me almost six months to get an appointment with a gastroenterologist/GI doctor. He did an endoscopy. Noted a large amount of acid erosion and put me on a prescription antacid, omeprazole, to reduce the acid in my stomach and help the erosion heal. Mercifully, he also gave me an anti-nausea med, Zofran (ondansetron), which helps a ton.

I wasn’t satisfied with this doctor so I found a new one. Of course, it took another six months to get that appointment. She was awesome. She ordered a gastric emptying study. They had me eat a plateful of eggs with a contrast in them and then take a number of x-rays over a few hours to see how the food moves through. Inexplicably, the study came back normal. The doctor was flabbergasted, but continued to treat me as if I have gastroparesis, which is evident from the symptoms.  She gave me reglan (metoclopramide), but only to use as needed. She doesn’t want me taking it all the time because it has some nasty side effects.

Over the last year I have found some things that help me manage the gastroparesis other than the med. I don’t eat raw salads anymore, because those can’t be digested well with my stomach the way it is. I don’t eat high fat meals, and I don’t eat big meals anymore. (Thanksgiving is fairly ruined.) Together, these changes help minimize the number of meals that I end up throwing up.

However, I know a lot of people with other chronic illnesses seem to develop gastroparesis. Whether this is due to the illnesses or the meds that we take for them is beyond me. All the same, I’d love any advice on  what else seems to work.

Work Series: Business Trips

Last week I was sent on a 2 day business trip. Trips can be a difficult proposition for people with lupus and other chronic diseases. Travel is exhausting, and getting somewhere often requires exposure to all kinds of nasty germs. Then there’s the trip itself. When I travel for fun I try to plan enough rest breaks, etc. I don’t have that option on a business trip. The agenda is already set – and you can’t go skipping things because you’re tired. By the end of the trip, here are the top 10 things that I had learned:

1. Don’t forget a mask for the airport and airplane. People might avoid you because they think you’re sick – but at least then you can’t catch whatever they’re carrying. So avoiding you is actually in your favor. Getting sick is no good – especially when you have meetings all day! (Of course, this applies to all air travel.)
2. Pack your heating pad. Long hours sitting on an airplane and in meetings plus exhaustion left me really achey and stiff. Having a heating pad to use at the end of the day made me feel a lot better. It made the next day of meetings so much easier!
3. Don’t forget your daily meds. I like med cases with the days that can be popped out so I can take just the relevant days. Small Tupperware containers or even snack size zip-locks also work in a pinch, but don’t forget to label the day and time of day.
4. Don’t forget your PRN meds. I forgot my painkillers and anti-nausea meds! This was very, very, very bad.
5. Streamline your work bag. You’re going to be carrying it around all day at the conference, so make sure it only has the few things you absolutely need. Your shoulder will thank you.
6. Pack comfortable shoes. I mean the most comfortable but still work appropriate shoes you can find. You will be on your feet, and your poor feet won’t want to be in uncomfortable shoes all day – no matter how comfortable they are.
7. and #6 also applies to comfortable clothes.
8. If you wear makeup, concealer and blush are a must. I looked all washed out, and I woke up with dark circles even in a fancy hotel with nice beds. The concealer also helped cover up the lupus rash I get on my face when I’m too tired.
9. I’m not generally a big fan of hand sanitizers since they can promote bacterial resistance and all, but in this case I wished I had kept a bottle in my bag. At work conferences you end up shaking a lot of hands. This is great for networking. It’s not so great for preventing infections.
10. Practice your acting skills. I’m all for educating people about my illnesses, but a work conference just isn’t the place for that, in my opinion. This is something that I do every day at work, but at a conference there wasn’t any lag time when I could relax out of that role. This meant I needed to keep a smile on my face all day long and fake good health. As frustrating (and exhausting!) as it is to do this, I want my work relationships to be based on my work not on my illnesses.
11. EDIT: One more amazing suggestion courtesy of @forgetful_girl: “One thing that I would recommend is packing handwipes/antibacterial wipes. When I go on a plane, I wipe down everything- handrests, remotes, trays. I also do the same when staying at a hotel, making sure to wipe over the remote.”

A New Job, A Fresh Start

This post was included in the Patients for a Moment: Starting Fresh blog carnival hosted at chronicbabe.com.

A couple of months ago I started a new job. My Twitter friends were probably sick to death of hearing me talk about job applications – it took an entire year and a half to get one. I did find a good job finally and I’m happy about that, but it’s also hard to let go of the career I was SUPPOSED to have. Since high school, I worked towards a medical career. I took the advanced science classes – and  sacrificed sleep to pass them. I put in the hours of lab research and community service. I shadowed doctors at ridiculously early hours of the morning. I even got in to a great medical school program and started attending classes. Then the lupus reared its ugly head and all of a sudden that dream was just gone. There was no way the crazy hours and high stress levels were going to get along with my lupus, so I was forced to leave the medical program. I think I’m still mourning that loss.  I see my new job as a poor substitute for the life I wanted, and that just isn’t a great way to face the world. It certainly doesn’t help that my new job is in clinical research – a field that I was trying to run far away from because I knew it wasn’t where I wanted to be. It’s definitely not something I want to do full time for the rest of my life.

It’s so frustrating when people say things like “Oh well, that’s ok, you can just find another career.” Well, sure, I can find another career, but it won’t be the career I wanted. The one that I dreamed about and spent 10 years working towards. That one was taken away from me by factors beyond my control. I know people mean well, but those comments just aren’t helpful. And then there are comments that I get from other members of the chronic disease community. Things like “Why can’t you just be grateful that you can even manage to work fulltime. I’m never going to be able to do that again. I wish I could work somewhere – anywhere.” I get where they’re coming from. The loss of life goals and feeling like we’re stuck on the fringes of society outside the circles of “respectable” citizens that do their part is a very difficult part of the chronic disease reality. I certainly don’t mean to undermine their feelings when I complain about my job situation, but I also shouldn’t have to hide my feelings from my friends. Everyone’s life is affected differently by these diseases, even if the overarching themes are the same.

It probably isn’t great for my mental health to see my life in this pessimistic light all the time. So I think my new goal is going to be to remember that just because this is where I’m working now doesn’t mean that this is where I need to end up. I’m not stuck here and it’s time to stop being so  bitter about what I’ve lost and start thinking about what I can still achieve DESPITE the lupus. It sounds so simple in theory, but I think it’s going to be even harder than I can possibly imagine. But all I can do is to try to keep steering myself towards the attitude that I want not the one that comes so easily right now. I may have started my job a couple of months ago, but I think the true fresh start is happening now.

Loving Pride with a Side of Wistfulness and a Dollop of Frustration

Last night I attended a law school graduation ceremony. Not just any law school graduation – one of my very closest friend’s graduations. She’s been one of my absolute best friends pretty much since the day we met. We were 12. We’re almost 26 now. You can do the math. She’s essentially family. So when she asked me to attend her law school graduation, saying no never really occurred to me. How could I not go if she wanted me there? The fact is, I know how hard she’s worked to get there and I’m incredibly proud of her. Of course I am. How could I not be?

One thing I’ve realized about living with a chronic illness: it invades and taints every last aspect of your life down to your genuine pride in your friends’ accomplishments. As I sat there and listened to the keynote speech about all the things the graduates could achieve, I couldn’t help but think about the fact that my lupus and fibromyalgia took away my own professional degree. There is no longer a med school graduation in my future (despite the fact that I’m still paying loans for the time I was in med school). I wonder if that reality is ever going to stop stinging…

It can be so hard to watch as other people’s lives move forward while mine seems to be stagnant. It isn’t, not really, since I do have a job. But it makes me irritatingly repetitive as I try to emphasize the couple of impressive things about my job because it feels so inadequate compared to what other people in my life are achieving as their lives move forward and I’m stuck in a regressed career time point that I thought I was well beyond. One, in fact, that I specifically didn’t want and pointedly moved away from.

Of course, I didn’t say any of that. I hid it as well as I possibly could. I didn’t want my pain to take away from her big day. That wouldn’t be fair to her. I couldn’t bear the idea of her worrying about my sadness at the loss of my life plans when she should be celebrating the accomplishment of hers. There’s no reason why her mind would drift to the idea that i would be anything but happy for her, after all. And while it is inarguably not fair for me to have to hide my true feelings either, I felt it was the lesser of two evils.

Alas – (Ok so maybe that word choice is a little excessively melodramatic, so sue me.) – this is a problem that never really goes away as the lives of the healthy tick ever forward while we sit around in some, inaptly named as it is rather slowly sinking, quicksand.

The Time Has Come, the Walrus Said, to Explain What “Mostly” Means

This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.

 

Today’s topic:

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

One of the questions that I get quite a lot since I switched over to this blog address (and title!) is “What is up with the ‘mostly’ in your title??” (Or some variation thereof.) Today’s HAWMC topic opens it up for me to write a post about it, and I think it’s been put off because a lot of people might take offense. So let me just say that I am just being honest and speaking only for myself.

One of the lessons that I’ve learned the hard way is that I need to stop when I suspect that I need to stop.  By that I mean that I often push myself beyond my limits – knowingly. And that is really want I’m talking about. It’s not the accidental overstepping, but the knowingly disregarding my limits.

There are times when I refuse to accept that I can’t do something that I want to do. So I go ahead and do it anyway. So I push myself to keep going even though I’m in a world of pain or I’m practically holding my eyelids open. I know that this is a bad idea.

This is why I say “mostly” blameless. We certainly aren’t to blame for the illnesses that we have, but I do think that I am sometimes to blame for how terrible I feel one day if I really pushed too hard the day before. I’m well aware when I’ve reached my limits, after all. I just don’t always know where that limit is going to be until I hit it.

But this is part of living with a chronic illness. Sometimes you push too hard because you want to attend an event or complete a project or go on a trip. It’s unreasonable to believe, at least in my life, that it’s possible to go through life skipping ALL those things that I want to be a part of. So sometimes I suck it up and go. And I pay for it. But, to me, it’s worth it.

My illness takes a lot from me, but there are some times when I’m just not willing to compromise. On those occasions, it’s my own fault that I’m feeling to downright nasty the next day. It’s a choice I make willingly, and I am the only one to blame for that.

Hmm.. on second thought, perhaps this is a bad example of a lesson learned, since I clearly haven’t quite learned it….