International Rare Disease Day

It’s International Rare Disease Day!! Please join me in raising your hands for support for those of us who have rare diseases.

In the United States, a rare disease is defined as one with an incidence rate less than 1:200,000. Rare diseases affect men and women of all ages and walks of life. Nothing about a rare disease is fair and convenient.

Having a rare disease makes you feel like you’re an alien that no one understands. But rare disease activism is doing away with that. Despite the fact that I’ve been diagnosed with this rare disease — Ehlers-Danlos syndrome (types 3 or 4) — I’m not alone. I’m part of a large community of folks around the world with rare diseases and their supporters. Somehow, not being alone in the fight? That makes a huge difference.

Most rare diseases are genetic, and one pretty cool thing about rare disease activism is that the awareness ribbon for rare disease is the blue jean (gene) ribbon. Like this:

Between the blue jean (gene) ribbon and the zebra ribbon for EDS, I think I’ve got some pretty cool ribbons.

A few months ago I received a package in the mail:

I've Got Mail!

Inside was a beautiful beaded bracelet made by Kylee of Cure-A-Cause and my very own blue jean awareness ribbon. I’m wearing it today in support of all those with rare diseases. Kylee: that means you too!!

thanks Kylee!!
thanks Kylee!!

so blessed to be part of a community,
Abigail

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Walk by My Side

It’s been a rough season for me. I’ve been stuck in bed a lot. I think I left the house 8 times in the last 11 days: church 3 times, 5 doctors appointments, and campus once. (I did two medical practitioners in one trip.)

Talking to Dr. Leo yesterday, I told him that based on my journals and our past conversations, it seems that I’ve been repeating the same cycle over and over and over again for the past ten months. It feels like I’m stuck in a vicious cycle and not getting anywhere. And it’s frustrating. Aggravating.

But the thing is, every time I have this conversation, I always have to issue the same disclaimer: I am beyond blessed that you’ve taken the time to share your ear, your heart, and your expertise with me. Even though the course of the illness is unbelievably hard to bear, it has made such a big difference to me to have someone(s) next to me through the journey. And I’ve had this same conversation with Dr. Mark and Dr. Samuel in the past week.

It’s the moment Taylor shared with me so long ago. It’s those conversations with Timothy and Aaron that assure me that they consider me to be one of “us”.

I’ve said it over and over again. I think I always will. It makes such a big difference to me that my physicians here not only don’t throw me out of their offices, but also they’ve invited me to become one of the team. My voice matters. When I suffer, the team suffers. That’s been incredibly validating. It’s helped me so much to continue to endure. To be sure, I’ve had terrible physicians. But they’re just a blip on the radar.

I saw this quote recently:

stand by me

As much as I want the cure, it’s so much more meaningful to me to have friends standing by me, friends who are not afraid to walk down a hard path with me. I know that they care about me in a deep and genuine way. They have to. Otherwise, they’d burn out really quickly. They’re not there because of what I do for them or how much money I (don’t) have. They’re not there because I’m a brilliant scholar or have a great future. They’re there because they care about me. Because it matters to them concerning me.

And I am grateful for God’s amazing provision. Even in the hard times, it’s so obvious that He’s there, caring for me in a particular way, in a way that no one can deny… or forget.

Ever grateful to my Savior,

Abigail

in which Molly is multi-talented

is the violin too big?
is the violin too big?
It’s been an interesting week. I’ve spent most of it in bed… or the phone. Sometimes I’ve been trying to relax… when I’m not going stir-crazy. I think I might start teaching Molly to play the violin if this goes on for much longer.

Abigail

Crying out to the God of my salvation

This song has been echoing in my heart recently:

Lord, my prayer is not for deeper suffering,
But that from each trial I’d be free.
Let the cup of bitterness be taken;
Yet, Thy will, not mine, dear Lord, must be.
Even now, though trials sore surround me,
Still within my heart there is a peace,
For the love of God outpoured within me
Floods my heart and bids my doubting cease.

Blest assurance! God has fully ordered
Every matter by His sovereign hand;
Every person (though we see so dimly),
Every thing’s according to His plan.
Every trial is but the Father’s answer
To the groaning of the Spirit’s prayer;
May He gain in every tribulation,
Until we Christ’s glory fully share.

My mom sent me a CD a few months ago that has this song on it. I’ve been playing it over and over again in the car on the way to and from doctor’s appointments (since that feels like all I ever do nowadays.) Somehow it comforts my heart.

Abigail

I’m Sorry, What did you say?

There’s a line in 27 Dresses that I really like. Kevin says, What about you? You don’t have any needs? Jane responds:

No. I’m Jesus.

In other words, his question is ridiculous. Well, I had a moment like that yesterday.

I was in Dr. Mark’s office. Not in the XXXXL room, but a regular-sized room. (Still with the elephant-sized gown though.) We were talking about all the pain I was in. And options: none of them were very good. And he asked me this:

Do you ever get frustrated that we never are able to help you?

I think I gave him this blank look like Did you just say what I think you said?

I try so hard to be the perfect patient. His nurse was complaining to me about how the other nurse got stuck with a schedule full of “time-consuming patients, to put it nicely.” I’m polite. I try to be reasonable. I try not to annoying. I try not to complain about things that aren’t the doctor’s fault. I try not to yell and scream and throw things at people just because I feel terrible.

experience my grief

But the reality is that I’m in a LOT of pain. And I very desperately want not to feel this miserable any more. And of course I feel frustrated when I pay people to help me and they don’t. Not because they don’t want to. But because they don’t know how.

What happened in Dr. Mark’s exam room?? Well, tears started streaming down my face. And I told him that it helps me a lot to talk to him about this stuff instead of lying in bed at home wondering if it’s serious.

It’s also so much better than the previous place where I lived where I kept getting kicked out of doctor’s offices. Nothing crushes your sense of worth like having the validity of your illness questioned over and over again by professionals who supposedly see “real” patients with “real” pain all the time.

But the reality of the matter is that no amount of looking on the bright side changes the fact that having a chronic illness really sucks. It’s hard and scary. When it happens to someone else, it’s easy to lose sight of it. But sometimes, the best thing you can do is to acknowledge it, to offer to experience it with the sufferer. That’s the mistake those other doctors made. They didn’t stop to think that disregarding the patient actually made things worse.

I like God’s promise of His presence here

Abigail

in which Diana points out my productivity

There was a day last week when I did not get out of bed until 3:30 p.m. This is bad news for Abigail. Especially for the stacks of books piling up for me to read. Nor does it bode well for the amorphous blob. (Nor for a lot of other things for that matter.)

Anyhow, there was a day I did not get out of bed until 3:30 p.m. And I was supposed to be at Diana’s apartment at 5 pm for a knit/crochet movie night. Seeing as how I couldn’t just roll out of bed into her apartment, I figured by 3:30 p.m. I ought to get out of bed if I still wanted to go.

When I got to Diana’s at 5:30 p.m., we were comparing notes on what each person had done that day. I said that I had done nothing. Because I didn’t get out of bed until 3:30. Well, that is, I got out of bed for both breakfast and lunch and then went back to bed. I also finished running the three loads of laundry I had started the night before. Oh, and I actually cooked lunch. And I graded 10-12 papers while I was eating lunch. I’m pretty sure I also put away some books that were in the middle of the floor because I kept tripping on them on my way back to bed.

This was Diana’s response: For a person who spent the whole day in bed, you certainly found a way to get a lot done! I think you’re one of the best skilled people in being productive while spending all day in bed.

Yes, it’s true. I have a lot of practice. And I know that laundry won’t do itself. But as long as the clothes are clean, they can still be worn even if they’re in a gigantic pile on the floor. Which means that I do laundry, I just hardly ever have the energy to put it away. Things like that: I know how to get stuff done that absolutely needs to get done…. And apparently, I know how to do that from bed.

I never realized that that was a skill. I never give myself credit for anything when I lie in bed all day. Maybe I should start. Because that’s a pretty impressive list of things accomplished on a day when “nothing happened”.

So fortunate to have friends with perspective,
Abigail

Amorphous Blob 2.0

My dissertation topic is coming together. I have a much better idea of what it is that I want to study. I’ve written a 15 page proposal, (which is quite the accomplishment because this girl is all about brevity!!) I’ve started doing research on primary documents and am stumbling on treasure troves.

The big thing I need now is to be able to stay awake for more than 10-12 hours a day. I’ve been needing a lot of sleep. I’m hoping that doesn’t mean that I’m battling an infection or a cyst. I’m hoping that I don’t have to see Dr. Mark again to talk about this again. Mostly, I’m just sleeping. And reading. And writing. And grading. And repeating.

Abigail

PFAM February 2013: Medical Literacy

This is the February edition of the “Patients for a Moment” blog carnival.

Literacy (noun): the ability to read and write; competence and knowledge in a specific area

How much should a chronic patient be expected to understand about his own medical condition? How much information are medical practitioners expecting him to bring to the table?

I’ve had conflicting opinions on this. I’ve had extremely fruitful conversations with doctors like Drs. Leo and Samuel where I’ve attempted to talk in their language. Gregory helped me put together a medical resume of my medical history that I’ve faithfully carted around to medical appointments for the past year or so. I find myself calling Dr. Bryan or Elliot when something comes up and I’m confused. At the same time, I’ve also worked in a hospital before. I remember those patients who thought they knew what they were talking about… but really didn’t. We had a name for them: annoying.

Barbara of In Sickness and In Health discusses the importance of researching your own condition. She deals with the fine line between being informed and being paranoid. It’s useful to know what the key terms are and what signs one should look for. At the same time, it’s awfully easy to fall into medical students’ disease where one thinks one experiences the disease currently being studied!!

Toni at Turning Straw into Gold talks about the ways in which one can approach internet research and how to bring up issues to your physician or medical practitioner without being snobby. I found her concept of diplomacy helpful.

Aviva of Sick Momma discusses why she started becoming mistaken as a medical professional. Simple knowledge of what has already been done gives command of the situation, which can save chronic patients from going around and around in circles, repeating the same (pointless) diagnostic tests.

Lydia of A Path through the Valley talks about medical literacy as a way to embrace your own identity. As a chronic patient, chances are that you’re the one who has to live with the consequences of it day in and day out. Maybe it’s a good idea to have a clue what it is you’re living with??

From the opposite perspective, Emma at Your Doctor’s Wife tells how the assumption of medical literacy can lead to some interesting conversations.

And Dr. Bryan shared on a social networking site a fantastic story about how medical literacy isn’t always everything. Medical professionals are trained to look for certain things and ask certain questions. If you’re coming at a problem from a different perspective, chances are that not only will you miss something they’d see but that you’d also see things they’d never think to take note of. And that can be important in the field of medicine, especially if you’re facing a disease that you’re going to be dealing with for a long time.

All in all, I gather that the consensus is that being an informed citizen can be useful. If nothing else, it can give you confidence in an immensely confusing situation (when it’s not making you quake in your boots.) I’ve found that finding information and asking questions can be useful; I like being able to have conversations with medical professionals about this new info and new questions. I also find that having a medical resume and being in command of your care makes sure that you don’t get swept under the rug in the 5 minute check-ups. And, it’s always fun to have a laugh at the ridiculousness of the medical profession. Not that any other profession doesn’t have its weaknesses… but it’s good to laugh every now and then.

Abigail Cashelle

Disclaimer: I didn’t get very many submissions, so I was expansive in what I considered to be submissions. I hope that this paints a fuller picture and also is helpful to those of us who, for reasons out of our control, have to face this issue fairly often.