Being Sick is Stressful

It just is. There’s no two ways around it.

It’s even worse because I’ve been chasing my insurance company around in circles.

I’ve also been trying to sort out medications because the one medication that helped made me really nauseous but now that I’m not taking it, all the problems that it was helping me with came rushing back!!

The brain fog makes everything hard to sort out. It’s like… uh, what are we talking about again??

Being kicked out by doctors and told by other people that if you just worked harder, everything would be better sucks too.

Having a chronic illness is stressful. And that’s how people get depression from having a chronic illness.

QED

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

A Few Words of Encouragement

From last night’s Evening Prayers:

Nevertheless I am continually with thee: thou hast holden me by my right hand.
Thou shalt guide me with thy counsel, and afterward receive me to glory.
Whom have I in heaven but thee? and there is none upon earth that I desire beside thee.
My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
(Psalm 73:23-26)

This Psalm speaks much of the hardship and unfairness of life. But I was impressed by how it ends. It ends with the psalmist’s trust in Jehovah and in His promise. Even when our flesh & our heart fail, God is the strength of our heart. In the end, His people are vindicated and receive the blessing. In the meantime, He holds us by our right hands.

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

Introducing… the Octopus

I took another personality test today. And apparently, I’m the equivalent of an octopus (INTJ). And you know what? I like it. Mostly because I saw this cake floating around on facebook. And I feel like I’m always working on 6-8 things at once. (Having 8 arms definitely helps with that.)

The authoritative test has this to say about octopi:

INTJs are independent types, wildly intelligent and creative — but rather un-interested in what anyone else is doing. They are often considered the most independent of all the personality types, and they work best when given freedom. They are acutely aware of their own intelligence, as well as what they don’t know, and their passion often lies in conceptualizing ideas and processing complex theories.

While I’d like to think that I do spend time thinking about other people and listening to their stories, it might explain why I make a terrible tutor. And it also goes along with the fact that I am very aware of what I know and what I don’t know, what I’m doing and what I’m not doing. And I like to conceptualize and process complex theories, even just for fun.

Another day in the life,

Abigail the octopus

P.S. I just remembered the EDS is sometimes shown as an octopus disease because octopi don’t really have bones. So that fits as well!!

Teaching Epiphany

I have this problem: I keep getting kicked out of doctor’s offices. They tell me that either I’m perfectly healthy or they don’t know how to help me. Or, there are some who don’t have the time or patience to help me. And it’s frustrating. It costs a lot of money and a lot of spoons to go to the doctor. And I’ve reached a pretty intense burnout. I do have a physical illness that has a huge impact on my life. Why won’t anyone take the time to understand and figure it out???

Today I found part of the answer. I was tutoring a student on the graphs of trignometric functions and she just was not getting it. No matter how many times I explained it, how many different ways I tried to put it, or how many examples we went through, she was just as confused as ever. And I found myself thinking, Could she just go away already?? If she left the tutoring room, I could help someone else. I could actually be accomplishing something. And I wouldn’t be banging my head against the wall over and over again. Could she just leave already or get un-dumber or something????

And I realized that I was making the same mistake that I was critiquing the doctors for. I wanted to create an excuse to get rid of this student. Either she just didn’t have a problem any more or I was better off investing my time in someone else because I didn’t know how to help her. And the thing is that I excused myself by making it about me and maximizing my potential. Or, she’s better off with someone else. Or, she’s never going to get help so I might as well move on.

And there it is. I made the same error as the doctors. And the ravenous lion actually.

I don’t know how to change my attitude. I know I’m working on my patience. But it was eye-opening to be on the other side of the issue.

Still a lot to learn,
Abigail

Quilting in Public

the hexagon quilt I was working on
the hexagon quilt I was working on

I did it!! My first time quilting in public.

I’ve been working on a hexagon quilt, and I’ve been piecing the whole thing together by hand. I brought a portion of it with me to my therapist’s appointment. I knew that I would have some random downtime (10 minutes here, 15 minutes there) and so I figured that I could make some progress on the quilt. And I had a really grand time.

Because I was quilting in a public space where most people just sit there waiting for their turn, a number of different people came up to me and asked to see the quilt. My therapist wanted to see it, and I got to show her how I incorporated different fabrics that held different meanings for me. Other patients and some of the staff stopped me to take a look. I even got to show the project to a little girl.

All in all, it was really cool experience. I definitely plan to continue hand quilting projects so that I can craft in public. I finally figured out what Future Girl is always raving about!!

I’m really excited about the opportunity. I feel like there’s this whole part of me that hasn’t really emerged outside my room and maybe the internet. I read a lot of blogs and books to get ideas, but I’m mostly making things up as I go. It’s awesome to get validation for what I do. But it’s even nicer to put that creative side of me out for the public to see. I think it’ll be a while before music really emerges again for me, at least from a performance perspective. But this is something totally new. Something I only picked up because of my illness. (Well, I always wanted to learn to quilt. But illness finally created the time and the patience to teach myself.)

A pretty happy day overall,
Abigail Cashelle

when I learn what needle gauge is for

so I’ve been working on a major quilting project. (Actually, I’ve been working on 6 different projects, but what’s new?) Anyhow, I discovered today that if you want to sew tightly woven fabric like vintage sheets, you should use a smaller gauge needle. Because the diameter of the needle is smaller and then sewing is less like punching holes in the fabric and more like going between the fibers of the fabric!! Who knew?

Abigail