What Doesn’t Kill You

You know that thing that people often say to those of us with chronic illnesses??

What doesn’t kill us makes us stronger?

I hate that expression. Why can’t we just accept that this is a terrible set of circumstances that are sent our way? Of course,

When life hands you lemons, make lemonade.

is certainly always an option. But I’d just as soon throw them back.

This article looked like the typical treatment of the same idea that is needlessly repeated ad nauseam. But I liked the ending. The grandmother encourages her to be like the coffee bean. She endures the boiling water and becomes something beautiful and fragrant, adding value to the world. But that’s not the point. The point is that she changed the water into something life-giving. It’s not just that she emerged different, but that the situation was altered because of her. It mattered that she was there. The world, as it were, will never be the same.

Advertisements

the rest of that ER story

I realize that I left you hanging with that last post. I guess that’s what happens when you write blog posts at 4 am. Short Story: I’m fine. Long story:…

I haven’t been sleeping very well because I’ve been a lot of pain. (I guess so much for telling the doctors that I’d been in much less pain.) Anyhow, I woke up because I really couldn’t sleep, and I was in a really bad mood. I couldn’t decide if I was just hungry or actually in pain, so I tried eating some stuff which made things worse. In debating over whether or not to go to the ER, things got WAY worse. So I wrote a note to the family, put it on my bedroom door, and grabbed some stuff & Molly and headed to the ER. Fortunately, I’d done my research before and figured out which ER made the most sense for me. (There are three ERs that are basically the same distance from my house.) That was about 3:15 am.

The whole trip was kind of surreal. I was SO exhausted that I wasn’t thinking clearly most of the time, but I was feeling bad enough to know that I couldn’t leave. I spent at least two hours in the waiting room with a young couple and their 14 month old daughter. She was really cute, and we managed to lean on each other a little bit emotionally, so that was nice. Both the dad and I had a lot of abdominal pain but were trying to be really saintly about it. (Not sure how much we succeeded on that point.) So I was grateful for the company, and Molly made a new friend.

I would have to say that it was the one time in my life that I was jealous of someone with appendicitis and was heading to emergency surgery. It sounds bad, but I saw the dad in the hallway right when he was getting diagnosed (and then word travels around the ER pretty easily since there aren’t exactly real walls.) I felt bad for him and for what they were going through and was praying for them and everything. I was just jealous of the fact that his middle-of-the-night ER trip was totally justified, that he had an answer, and that he was given a solution. Unfortunately, I had none of those.

They were able to confirm that I do not have appendicitis nor an infection nor anything else life threatening. It wasn’t even immediately obvious if it justified an ER visit anyways. It could have been an entire waste of $700 and a whole bunch of “sleep”. But talking it over with Alana, I realized that there were some serious red flags. Like I measured my heartrate with my phone app and it was 136 beats/minute. (My resting heart rate is generally under 70 bpm.) I was so scared and so tense because of the pain that I was having a hard time breathing. So perhaps even if the ER doctor was confused why I went in, I think it’s a good thing that I got things checked out and that I got a few things ruled out right away. Otherwise, this girl who has to take care of herself all the time would have maxed out capacity-wise.

So yeah, I didn’t get back to my house until 9 am. And I taught two classes and tutored for an hour all after that.

I’m actually still up and down as far as pain is concerned. Dr. Leo has me on some formula that’s helped some when eating is just a nightmare. And I’ve been trying to rest a lot even when I’m not tired because I know my body is in mega temper tantrum mode still. I’ve been listening to this song (above) over and over again when I can’t fall asleep at night. I reminds me of great childhood memories, and it helps with the not freaking out & actually breathing. And I try to remember that my body tends to throw fits when it’s thrown new things. So I’m trying to take it all in stride.

Just another day in the life,
Abigail

Exhausted…

As Molly can probably testify, I’m emotionally exhausted. Now that I’m back home, I’ve been tutoring some and have even tried to go back to work. Given how many things I dropped in a four hour period and the fact that I started crying when a coworker asked how things were going, I’ve concluded that I’m not being lazy just sleeping all day. I really need the sleep and time to unwind. That’s why I’ve been incommunicado recently.

What I learned at the Clinic of St. Jude (briefly):

  • I have Ehlers-Danlos syndrome, (type III or IV). It’s not an absolute diagnosis, but I’m convinced. And I’ve decided that that’s good enough. It’s probably the cause of everything that I have.
  • I suffer from hyperdynamic circulation. This is a direct result of EDS, and I now have scientific measurements for this.
  • I suffer from extreme hypermobility. Not only do I meet most of the Beighton criteria, but I also have sacroiliac joint dsyfunction and have winged scapula. In essence, my body is simultaneously falling apart and holding itself together. My sister says that I’m a living jellyfish.
  • I suffer from a central sensitivity disorder. My body is sensitive to things like sound, light, food, dust falling, who knows what and sends out major alarms. Some of these things are internal (like the GI symptoms) and some of them are external; some of them physical, some of them not. It belies simple logic.

The doctors have suggested physical therapy and moderate cardiovascular fitness (while wearing tight-fitting garb) to help with some of this. There’s not a good treatment for EDS yet, and they don’t know a whole lot about it.

I have several consultations scheduled over the next few months, so it remains to be seen what comes of those.

It’s been rough because they messed a lot of things up with scheduling and records transfer and the like. Half the time I felt like I was banging my head against the wall or trying not to throw a huge temper tantrum.

But it’s liberating to have a solid diagnosis and to know that I’m not making this up or that I just need to try harder. I did end up becoming more bossy that I prefer, but everyone agreed that that was to my absolute benefit. And Dr. Leo pulled through for me, advocating for me from afar. My coordinating physician at the clinic mentioned that he had talked to Dr. Leo over the phone and that he seemed “really on top of things”.

That’s the short story. When I’m less exhausted, I’ll probably write more.

Thanks for the continued prayer and well wishes. And happy rare disease day.

Abigail Cashelle

PFAM: Holiday Wishes

Merry Christmas readers!! This month, I asked my fellow spoonies what their thoughts were on the holiday season. If they could ask for anything (without being worried about offending someone), here’s what they came up with:

Leslie at Getting Closer to Myself came up with a Christmas wish list of items that she’d love for Christmas. Like my own virtual shopping lists, these include both things that she’s admiring and things that help her as a chronically ill woman, reminding us that while someone is ill, that isn’t their entire identity, so not all their holiday wishes are illness-related!!

Rachel at Fluted Cups and Ampersands reminds us that just because thinking about illness makes you uncomfortable or feel guilty or anything else, it’s okay to talk about it. Part of coping with illness is helping other people around us cope with it. We need people to lean on, and we also understand that you are not superwoman. (That’s part of the miracle of illness; we learn our own mortality but we also become sympathetic with others’ mortality.) Let us help you; allow us to make this a two-way street where you give but you also receive.

Duncan of Duncan Cross points out that holidays can be stressful for those with chronic illnesses. Just because we recognize our mortality doesn’t make us immune to the stress of the holidays. Duncan says that holidays (1) destroy routine, (2) require (physical & emotional) work, and (3) are in the winter. All of these are especially taxing on the ill. So please cut us a little slack. (And Duncan: I didn’t beg; I inspired.)

Elizabeth of The Girl with Arthritis gives a tutorial on how to hug someone with a chronic illness, particularly one with inflammatory arthritis. If we somehow summoned the strength to make it to a holiday event or even to crash on your couch, we’d prefer that your gratitude not make our condition worse. Learn from Rachel on how to safely hug someone who’s physically hurting. And think about waving or shaking forearms (instead of hands) to reduce the amount of germ-spreading. We’d be eternally grateful.

Ms. Rainbow of RARainbow quotes the Dalai Lama saying: “Our prime purpose in life is to help others. If you can’t help them, then at least don’t hurt them.” Instead of bullying someone whose life is different than yours, learn more about their situation or just smile. Even the smallest act of kindness can mean the world. (Ms. Rainbow, great quote by the Dalai Lama; I’ll have to file that away with my memory of meeting him!!)

Rihann Louise of My Brain Lesion and Me notes that “Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.” It’s so true. I’ve started writing holiday cards to the people who have been the most supportive. Just writing a note saying why they’re so valuable to me as friends has been profoundly therapeutic to me and also fits right into the spirit of the holiday. Because really that’s what we need the most: your support. (At least that’s my holiday wish.)

That’s all, folks, for this month’s round of Patients for a Moment. Look for some new and exciting things happening in the new year. Among them, Duncan Cross, founder of PFAM, is starting an online book club for patients. Every three months, the book club will read, review, and discuss a book about illness and disability. If you would like to participate, or suggest a book, get in touch with Duncan at dx@duncancross.net. (Note that both I and Leslie already have book lists, so if you’re looking for some “light” holiday reading, here are some suggestions.)

Best wishes and happy holidays,
Abigail

Twister

image from original patent application
image from original patent application

In America, we have this game we call “Twister“. I’ve played it once I think. It involves colors and placing your hands and feet on the appropriately colored spot when signaled to. Usually someone winds up attempting some impossible position and falls down. The goal is to be the last man standing.

Well, lucky for me, I don’t have to get out a board whenever I feel like playing Twister. In fact, I don’t even have to feel like playing it. My life is one giant Twister game. Or so it seems. Allow me to clarify.

One time I was visiting Tabitha and exploring her town on my own. I met up with one of my college friends, and he and I decided to tour the sites. Somehow, we managed to go in and out of a lot of buildings which had stairs but no railings. I kept reaching out for his shoulder to use as support every time we went down the stairs. He knew about all my health issues (being my classmate and all), but finally I just blurted out, I fall so easily. I’d rather not risk falling while I’m on vacation because it takes SO long to heal. He said that it wasn’t a problem and that he was glad I had told him so that he could be sure that I didn’t fall while we were out. Fast forward about three months and I was emailing him to tell him that I hadn’t been paranoid and that I had actually fallen and twisted my ankle walking in my own house. I think it took about six months to recover from that. And that was three years ago!

Well, unfortunately, my life continues to enjoy the game of Twister (it seems.) Over the weekend, I was playing with a little girl and somehow my knee started killing me. Come to find out that I had tried to use my knee as a ball and socket joint instead of a hinge joint and wound up twisting the tissue all in there. I’m sure the chiropractor thought I had done something super amazing but I’m fairly certain that all I did was stand up from the couch.

The problem with having a connective tissue disorder, especially one with a collagen deficiency, is that your muscles just don’t bounce back the way that they’re supposed to. One could get used to it except that the failure isn’t consistent. Most of the time it’s somewhat wrong, but occasionally it’s really, really wrong. And you don’t have any control over when that happens. Suddenly you go from just walking to scrambling to find your balance and not trip over ten other things on your way to the ground. Add a muscle relaxant in and you’re asking for trouble.

DSC00411
one, two, three, practice landing!!

I’m forever grateful that my parents signed me up for gymnastics back in the day. I can’t stand being upside down (which is about half of gymnastics), so I never got very far, but I did learn a very valuable skill that I use all the time: how to fall without hurting yourself. We practiced “falling” off a balance beam and landing in a neat tuck position. We practiced swinging off the bars and landing on our feet. We ran up to the vault, jumped on it, and then practiced jumping off of it and landing in the perfect position. And it turns out, if your life is a constant game of Twister, knowing how to land is very important.

Hypermobility == a lifetime of playing Twister, with yourself, for no points whatsoever. Since I have no desire to be an eternal couch potato, I’ve resigned myself to being careful and sometimes just being in the healing era. Oh, and owning up to the problem occasionally, especially if it’ll help prevent injury.

Abigail

Vindicated, yet Frustrated

I’ve been dealing with a swollen breast for the past 15 months. It’s been incredibly annoying. And it gets in the way of everything. When you have people at the grocery store pointing out that your clothing hangs weird, you know that things have gone too far.

The problem is I’ve seen a lot of health professionals about this. In between many, many episodes of the XXXXL gown, Dr. Mark and I tried to sort through what the condition could be and how to fix it. When I saw him last week, we lamented how I had already tried (1) steroids, (2) non-steroid anti-inflammatory drugs (NSAIDs), (3) topical NSAIDs, and (4) antibiotics. He didn’t have anything left to offer. And the problem is that no one besides him had ever taken me seriously.

First, there was Dr. Voluble who was absolutely no help whatsoever. (I still wished I had walked out on him.) Then I saw a bunch of other specialists, all to no avail. They told me that I was young and skinny and female. And that things fluctuated. Of course, I also got a lot of lectures about not drinking caffeine, but I don’t anyways because (1) I never have and (2) that’s bad for my sleep architecture. And I also got lectures about wearing sports bras, which seemed to only magnify the problem & are terribly impractical for someone who’s trying to be a professional. Mostly, I’d gotten thrown out of a lot of practices.

Of course, Drs. Leo & Samuel were sympathetic and made various suggestions, but it is WAY outside their scope of practice. Dr. Harold and Mr. Eric also made observations and kept track of how things were progressing. But all my doctor allies keep reiterating how much this needed to be brought under control, especially since I was having to buy a new wardrobe and was really self-conscious about going out. Plus, as Joseph pointed out, it was anything but normal, so it needed to be addressed. That’s a great consensus but what’s a girl to do?

So today, I finally saw a specialist in my new area. After 2.5 hours in her office (!!), she said that yes, there definitely is a lot of swelling on that one side. Unfortunately, given everything that I had already tried with Dr. Mark and given the fact that the imaging came out totally normal, she had nothing to offer me.

Finally, someone who deals with this didn’t just kick me out in the first five minutes. But still. She didn’t have any solutions for me. She just said to keep an eye on it and to come back in three months if it wasn’t better. She said that sometimes people with fibromyalgia get this kind of thing and that it takes forever to clear up. (At least that’s what she’s seen from her patients.)

I’m not sure what Dr. Mark is going to think. I kind of wish I was back in that area already, so we can rehash everything. I also just realized that the medication that I had been taking recently and had seemingly helped a lot is probably also responsible for the massive nausea that I’ve been feeling. So, it’s all back in one massive circle. And I still have to buy asymmetrical winter clothes.

So I’m vindicated, yet so very, very frustrated.

Abigail

PFAM November 2013: When You Feel Like Giving Up

This month, Leslie at Getting Closer to Myself asks, What do you do when you feel like giving up?? Funny you should ask Leslie. That’s come up a lot lately.

Like Leslie, I’ve just moved to a new state and left graduate school to start a new chapter in my life. It’s been a really hard transition. Aaron asked me earlier this week how my life is going, and I could only think of one response: hard. I’m pretty sure that someone else in the chapel scoffed when I said that, but I don’t care. It’s true. It hasn’t been easy. It’s been hard.

So Leslie, I feel like giving up a lot more than I did before I got sick. In fact, I prided myself on never giving up before I got sick. Now I’m much, much more aware of my own limitations and my own mortality. Here are a few things that have been helpful to me:

1) Being honest with myself. I’ve found that it’s been helpful to own up that things are hard or that I feel like giving up. They say that acceptance is the first step to recovery, and I think in a real sense, it’s a prerequisite to all the other things. Be careful that you don’t fall into the trap of self-pity or making excuses. You’re being honest, not giving yourself a get-out-of-jail-free card.

2) Lean on friends. Seriously, that’s what friends are for. When God told Adam in the Garden of Eden that it’s not good for man to be alone, He was on to something. Reach out to people who can sympathize. Reach out to other people who can empathize. Allow people to be with you in your hardship. Ask your doctors for support, especially if they know they can’t really help you.

3) Cut yourself some slack. Ask for help with the little things: laundry, meals, returning books to library, checking the mail, taking out the trash, delivering gifts to people. Allow people to pray for you. Tell God how difficult it is for you and how you hate how things are.

4) Make me-time even if it means not doing the little things or taking days off work or skipping chapel. (That’s what #3 helps with.) Sometimes this means sleeping. Or watching lots of TV. Or picking up a new hobby. I’ve made quilts. I’ve read lots and lots of Christian fiction and Jane Austen fan fiction. Sometimes I even go on virtual shopping trips. It doesn’t really matter what it is. Just take some time to take care of yourself, to take the phone off the hook, to check out of all the problems of life, and just tune in to yourself and what you really need. Most of the time I feel like giving up, it’s because my needs aren’t being addressed by other people. Well, step #1 means that you need to take time to address them or even listen to them. It’s hard to do that when you’re tutoring your baby sister in calculus or unloading the dishwasher or whatever. (And then, of course, step #0 is acceptance.)

5) Think about your life’s purpose. I decided a long time ago that I wanted every day of my life to count before God, and I wanted to bring a smile to someone’s face almost every day. (Some days I never get out of bed and therefore never encounter anyone. I cut myself some slack.) Some days it’s something big like volunteering in a local community or helping someone with their homework. Other times, it’s just smiling to the person in the car next to me or saying “thank you” to the clerk at the post office or making a friend smile over the phone. (I think I’ve become adept at hearing someone smile.)

I’ve found that hardship has little to no correlation with purpose. When things get hard or seem impossible, there’s always still a reason to press forward. I know that it matters to someone every single day that I’m here. And that makes it all worth it.

A few things that I’ve also learned not to do:

1) People who are worse off than you: This is incredibly subjective and isn’t that helpful. It’s true that there are people who are “worse off” than you. For example, I ran into someone after prayers yesterday who was asking for a sleeping bag because he was sleeping outside in near freezing temperatures. Those are definitely shoes that I don’t want to fill. But, you know, I think hardship isn’t a one-dimensional scale. Just because our hardships are different doesn’t mean that they aren’t exactly that: hard. I’ve learned not to discount my own reality.

2) Spending time figuring out what you did wrong or how you deserved this reality: This also isn’t helpful. It becomes a trap and a vicious cycle. Not everything in life is this straightforward. Plus God doesn’t work this way. His ways are mysterious and are not always straightforward and simple. We shouldn’t presume to understand what He’s doing.

3) Letting other people tell you that you’re sick (or your life is difficult) because of _____: Again, not helpful. When I was struggling very much with depression, one group of people told me that I was sick because I didn’t pray enough and another group told me that it was because I wasn’t making a sufficient effort to be well. It took me a long time and the insight of a very astute friend to help me realize that those comments weren’t helpful. Even if those comments were true (which is debatable), they don’t help someone get out of a funk. Now when people tell me that I should pray more, I ask them to pray that God would give me the strength and desire to do that. I know that God only answers prayers that match His heart. I’ve learned to say “no” to some people. The people who tell me that if only I exercised more I would stronger? I tell them that that’s how I got to be as sick as I am now. Sometimes I ask people to help me out with their own suggestions. The former classmate who wanted me to sue the ravenous lion? I asked him to figure out what steps I would need to take to make that happen because, while that makes sense (maybe), I didn’t have the energy to do it AND be in graduate school all at the same time. Then he understood. And sometimes I just smile and nod. Like the guy who pulled me aside after church to tell me that I needed to try protein shakes because I was unhealthily skinny. I used my former professor’s advice. Just smile and nod and say that you’ll think about it, you’ll consider their suggestion. Then walk away and forget about it. You just spent the past five seconds thinking about it.

These are just some notes on what has worked for me. I would never presume that these would work for everybody. But I hope they might be helpful or encouraging to someone.

All the best,
Abigail

What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like

For the PFAM carnival, Duncan wants to know what my illness feels like. Well, Duncan, since you asked, my illness feels like ASDLKHGA[OYI2(&^#!$LJBFAPDGI09*^@~(*^{KLJAHSDGO[YAWEGFB;L. Got it? Oh wait, that’s how I feel about my illness.

imagine being the pea (rather than the princess)

What does my illness feel like? Well, it’s awful. There are no words to describe it. It makes you feel like you’re buried under a mountain of mattresses and like you can’t get out. In order to do anything (like walking across the room and putting your laundry away), you feel like you’re a robot trying to learn how to walk while waist-deep in an ocean of molasses. Things like light, smell, food, and inpatient people stress me out and stress causes pain which causes fatigue which causes me to lose weight (but also have something to talk about in therapy.) Illness numbs my mind so I easily lose my train of thought or just can’t think because wait, WHAT are we talking about again? That’s what chronic fatigue syndrome feels like.

Plus the pain. I don’t have any way to adequately describe the pain. Except that a pain scale of 1-10 is just WAY too simplistic. I can tell you about persistent, throbbing, intense, background, fluctuating, numbing, stabbing, and localized pain. I can tell you about achy pain, about the feeling that you can’t use your eyes or ears correctly & you guess that can be called pain too?

Ehlers-Danlos syndrome or a connective tissue disorder (if that’s what I have). Well, pretty much that means that anything is more dangerous, so you’re constantly having to be alert. Try doing that at the same time as battle brain fog. There’s no point in trying to have energy for anything else. Anyways, I have to be really careful when I walk or reach for things or lay down or write or whatever, because my body is super flexible. That means I can sit in some really awkward position and not even realize it until six months later I’m trying to figure out what that stabbing pain is in my hip. Oh? Sitting with your legs double-crossed isn’t normal??? Ooops. My left elbow gets pulled out of joint pretty easily, so I have to make sure I don’t slam that elbow against the wall while I’m asleep or try to lift things with just my left arm. It means that I fall really easily so I have to wear tennis shoes all the time, and even then I’ve fallen on flat surfaces and had to spend months in physical therapy. It means that I can’t wear fun shoes like all my friends and they like to make fun of me for it. It means that I have to wear long sleeves and leggings if I want to be outside at night in the summer; why? Because I bruise really easily and mosquito bites turn into bruises and then I look like a victim of child abuse or maybe domestic violence now that I’m older. It also means that I don’t have a typical response to almost anything, so add a huge amount of frustration to everything.

in case you forgot what Oscar the Grouch typically looks like

It means that I come across as a very cynical person. Abigail, are you sure you need to wear leggings to watch fireworks? I mean, why are you so worried about people thinking you’re a victim of abuse? That’s ridiculous. Everyone can see that you’re happy. OR Abigail, why don’t you ever want to have a good time? Maybe things will just be fine this time. Mostly, I’m just very practical. I’ve discovered things like if I’m around loud noises for an hour, sometimes I’ll be in bed for four hours recovering. So guess what? Going to that church service just isn’t worth it. Or it takes forever for those bruises to heal, so I’m not taking my chances. Because people do ask.

I’ve become an Eeyore. He’s cynical and doesn’t look at the bright side of anything. But, he’s still pretty happy. He’s not like Oscar the Grouch. He has friends, and he cares about them. He likes the color purple and knows that going to a birthday party is important. He just looks at life differently. Because that’s who he is. And so, most of the time, I have Eeyore days. I’m being honest & transparent. That might come across as Eeyore the cynical. And that’s okay. Because I like Eeyore.

In fact, I’ve decorated my bedroom with an Eeyore theme.* Just a little bit. And more in a sophisticated way than nursery decor. It’s not super obvious because I didn’t want to overwhelm my friends with doom and gloom. But seeing him makes me happy. Because he gets me. That life is hard. And painful. And exhausting. So he’s peeking out of various nooks and crannies.

And to give you a glimpse of what my room could look like, I compiled this treasury on etsy. It’s a bit much, especially since I have nowhere near that many light switches to cover. But it’s the general sentiment.

with love (and honesty),

Abigail Cashelle

___

*I gravitate towards smiling Eeyore though. He’s surprising not that hard to find. But you do have to look. And that’s the Eeyore I know.

Random Symptoms: Ear Pain

So, my left ear has been killing me. For. No. Good. Reason. And I’ve been working on a new quilt but apparently I can’t add any more. (When your queen size quilt is 35% smaller than it should be, we have issues.) And so life has been exciting.

But this ear thing? Seriously. It’s driving me crazy.

Half the time I think it’s a jaw thing. Because my 13-year molars are still emerging on the left side, and the gum is swollen. Plus if I don’t open my mouth for a while, it hurts more.

But the other half of the time it feels like an ear thing. Like WAY deep inside the left ear. And it hurts to hear. And to think. And to sleep.

The ENT I saw removed a bunch of ear wax from that ear, which relieved a bunch of the pressure, but it still hurts a lot.

I’m secretly convinced that there’s something wrong with the left side of my body. Okay, it’s not really a secret. And it doesn’t take all that much convincing. It’s more of an observation.

Anyhow, I remember having bad TMJ pain when I started graduate school two years ago. But somehow this feels different. Maybe I need to go find the notes from the doctor that I saw back then.

So much to do. Somewhat overwhelmed. And out of spoons. Do you think reading The Ear Book would just make this all better? Because I used to love that book. And it would be so much easier.

Just another day in the life,
Abigail