Where I’ve Been, What’s Up with this Blog, and Other Misc Questions You May Be Asking

Greetings!!! WordPress tells me that it’s been eight months since I’ve posted to this blog. That’s a long time not to write. Maybe you’ve been wondering what I’ve been up to. Maybe you’ve forgotten that I’ve existed. Either way, here’s a quick synopsis of where I’ve been, the new directions my life has taken, and where I see this blog moving.


What I’ve been up to:

Once I got that faculty job in Fall 2014, I stopped writing as frequently on the blog. Why? Blogging for me was always an outlet to figure out my journey with chronic illness. It was a way for me to chronicle how I felt and where I saw myself going. It was a place where I could write down memories I knew I would forget, and a place for me to return to whenever I needed to look at the past and try to ascertain progress. It also served as an amazing way to answer the question of how I got to where I am today. Once I started working that faculty job, things changed for me. Life got a whole lot busier because I was doing a whole lot better. Things were still weird with family, but I had found a good rhythm. Besides, I was working three jobs — teaching, retail, and tutoring — and those took a lot of time and energy.

Then in Fall 2015, I returned to graduate school and moved back to Beaverville. Life was a bit simpler except for the fact that I was trying to cram two semesters into one, including such herculean tasks as reading 60 books in one term, passing comprehensive exams, teaching, and taking three classes. Somehow I survived. And passed all the exams and the classes.

Enter Spring 2016: I was planning to defend my dissertation proposal, which by now was less amorphous than previously. However, life (or the universe) had other plans it seemed. First, my paternal grandmother got diagnosed with late stage ovarian cancer and given only weeks to live. I spent a lot of time on the road and visiting her, particularly because she kept telling people that she used to know me and I was someone special who lived far away but still took the time to come visit her. She passed away in early March which was really rough for me but probably good timing for her.

At the same time as her diagnosis, my new adviser suggested that I take a completely different angle on my dissertation project. He said that it would simply be a reorientation on my existing project. I knew that it would be a completely different project. At first, I was mad, but then I realized that he had identified a very finite, concrete project that I actually understood and knew how to accomplish. Plus I could get more training from him and could finish sooner. So I set aside my first proposal (maybe a second book?) and took on this topic. By now I have a working proposal that I’m planning to defend in the early fall, after I complete several months of research. (It’s a bit out of order, but nothing in this grad program has followed the beaten path, so what’s one more detour?)

Literally a few days before my grandmother passed away, someone new entered my life. The timing, as you could imagine, was not my idea of ideal. However, we started talking online, and he was genuinely supportive of me as I tried to navigate writing an obituary and helping my dad decide whether we were going to have a funeral or a graveside service and cleaning out all my grandmother’s possessions. Shortly after I got back to Beaverville, we had our first in-person conversation. And we’ve been talking (online and on the phone) and taking walks around the neighborhood ever since.

At this point, I’m not really sure what his role in my life will be long-term. I’m still pretty confused about where the Lord is leading me and why He arranged for all these things to happen at the same time. Some of the fellowship I’ve gotten is to just be open to the possibility that this is the Lord’s perfect arrangement even though I know in my head that there are too many things going on all at the same time. In the mean time, I’m praying and trying to just take things one day at a time.

Which brings me to the next point: where this blog is going now. I realized that one way I’ve worked things out in my life before has been to write on this blog. It was a good way to preserve memories without dwelling on them. I’ve been considering it for a while, but I’ve decided that this blog can become a place where I can write about “the boy” (that’s what I’ve decided to call him on the blog), the things that we’ve done, the emotions that I’m feeling, and the crossroads that we’ve come to. Some of the posts will be password protected. At some point, some of those posts may become public; or perhaps, they will only exist for me. Either way, I want a record for myself of how I’m feeling and the situations I’ve run into. Mostly so that I don’t have to hang on to the past and can live in the present. If at some point in the future I need to revisit the past, it will be there. And if life takes yet another turn and I don’t need a written diary any more, I’ll probably disappear again.

Also, dealing with all of these new changes has coincided with some health issues flaring up again. Which, if not anything else, means more scenes playing out in doctor’s offices. So don’t be all that surprised if you see some of those again.

Thanks for tagging along for the ride. Feel free to read selectively. I may post some retroactive posts before this one just to keep things in order (since I am a historian after all.)

See you around,
Abigail Cashelle

It’ll Make a Great Story Some Day

It’ll make a great story some day. One of my professors mentioned that I seem to be juggling a lot this semester. That’s how I responded to him. Well, at least that was the conclusion. Allow me to elaborate.


Setting: Professor’s Office. Abigail and Professor are talking. Context has already been established that Abigail is trying to reach ABD status by the end of the term and that includes mastering sixty books. At the moment, this meeting is about the final paper due at the end of the term for the professor’s class, which Abigail is trying to figure out how to fit into her schedule.

Abigail: Yes, definitely. This conversation helps me a lot to figure out what it is that I’m trying to do. At least how I can meet your expectations while also accomplishing something helpful.

Professor: Yes, well, that’s the goal. It’s good to get started now.

A: Yes, well, you see, I wasn’t planning to come back to school. So I’m still wrapping my mind around the fact that I’m here. Now I’m right in the middle of all of this.

Prof: Wow. You certainly have a lot of things that you’re trying to accomplish in one semester.

A: (thinks about trying to learn a language, take this class outside her field, read 60 boxes, and TA a class) Yes, well, it’s certainly a lot. It’s going to a whirlwind and a LOT of work, but I’ll get through it. And then, it’ll make a great story!

Prof: Uhhh, yeah, I suppose that it will.

A: Oh, it most definitely will.

Curtain


Yeah, so it is a ridiculous amount of work. And I’m already behind. But I’m happy (when I’m not overwhelmed). And it’s going to be a great story. Not just because I can finally laugh at the ravenous lion. But because it will be my story. And showcase who I’m becoming. And that, dear reader, is exciting!!

Abigail

Act III, Scene 1

Vaughan pharmacists 1954Scene: a typical grocery store with a pharmacy counter. It’s dinner-time so the store is fairly peaceful. There’s people walking around but it’s not a hectic atmosphere. Center stage is the pharmacy counter and to the left is the entrance to the grocery store. As the curtain rises, patient enters the store and walks toward the pharmacy counter. Pharmacist looks up through his window & waves to patient.

Patient (at the counter now): Hi, I’m here to pick up a prescription for Cashelle. C-A-S-H-E-L-L-E.

Tech (at the computer): Let me look that up. [pause] It looks like we haven’t filled it yet. Can you give us a few minutes? Then we can have it ready for you.

Abigail: Ok. Sure.

[Advance clock by 15 minutes. Abigail is now sitting in the waiting area. Pharmacist now waves at her to come forward]

Abigail (approaching the counter): Hi.

Tech: We filled that prescription for you. Can you verify your street address?

Abigail: 1234 Any Street.

Tech: Thank you. Your total comes to —- amount.

Pharmacist (leaning over from his computer to the counter): Hey, how are things going for you?

Abigail (ignoring tech): Lots of ups and downs. I’m just trying to hang in there. It’s been rough recently.

Pharmacist: Yes?

Abigail: You know that I was on that muscle relaxant metaxalone, right? (pharmacist nods) Well, I have this connective tissue disorder called Ehlers-Danlos syndrome that affects the collagen in your body. And the muscle relaxant seemed to help with a lot of the symptoms. Except that it made me really nauseous. Like I stopped eating. And that became its own problem. So they switched me to another muscle relaxant. I picked that up yesterday but I haven’t started taking it yet. My first dose is tonight.

Pharmacist (to tech): Can you look up what that prescription is for? (Tech clicks away on her computer while pharmacist looks on.) Oh yes.

Abigail: Does that look familiar?

Pharmacist: Yes, definitely. I can see what they’re thinking. I mean, I can’t really tell you what to expect because, well, you know, you never react in a way that people expect. But keep coming in and we can figure this out, okay?

Abigail: Okay. Do you see this often? I mean, people with connective tissue disorders & muscle relaxants?

Pharmacist: Well, not really. I mean, that condition is pretty rare, right? But now that I know, I’ll keep an eye out for it.

Abigail: Oh, right.

Tech (who has been ignored the whole time lifts her eyebrows and pharmacist steps away): That will be $—-.

Abigail: Oh sure. Sorry. Here’s my card.

[They complete the transaction and the tech steps away from the window. Abigail goes to pick up all her stuff and leave. When she looks up again, she realizes that the pharmacist has come back and is now leaning over the counter with this confidential look on his face.]

Abigail: Hi.

Pharmacist: Ummm, what did you say the name of that condition is?

Abigail: Ehlers-Danlos syndrome. Do you want me to write it out?

Pharmacist: No. Can you spell the first part? Is it I-L-…?

Abigail (shaking her head): No, no, it’s E-H-L-E-R-S. It’s named after someone.

Pharmacist: Oh, okay. They always are. Can you tell me a little bit more about this condition & how it affects you?

Abigail: Well, it’s a connective tissue disorder that affects the collagen in your body. Usually, people discover that they have it because they’re very hypermobile, like double-jointed and stuff. In the United States, it’s typically considered benign, but in Europe they’re realizing that it also affects things like your digestive tract & your neurological system because they’re composed of connective tissue as well.

Pharmacist: Oh, so this is a collagen deficiency?

Abigail: Yes, you got it. It’s rare, and they don’t know a whole lot about it, but it seems that people with that condition tend to respond to muscle relaxants especially when they don’t respond to much else. Physicians have started noticing patterns like treatment-resistant depression. It’s genetic dominant, and we think it runs in my family. Perhaps my uncle Eddie had it.

Pharmacist (gears in his head churning): I see. Well, thanks for sharing all this information. I’ll definitely keep my eye out for you. And come back if you’re having trouble. We can get to the bottom of this.

Abigail: Thanks so much.

Pharmacist: Sorry I can’t do more.

Abigail: No, this is amazing. It’s so hard for me to keep track of all these things myself. There’s so many different medications, and tons of stuff for me to keep track of. All I want to do is feel better and not have to deal with this. Plus, I studied history in college. It’s not like I’m prepared for all of this. It’s helpful just to know that I have someone else on my side, someone who’s an expert who’s looking out for me.

Pharmacist (smiling): History! Okay, well, I can definitely do that. We want that for our customers. Thank you again.

[As curtain is closing, you see Abigail picking up all her stuff (again) and leaving while pharmacist walks back to his computer muttering “history!”]

CURTAIN.


That’s pretty much how the scene played out between me and my pharmacist yesterday. Ken has always been really thoughtful and caring and approachable, so I feel like there’s plenty of reason to go back (besides the fact that I keep getting prescribed meds.) It’s certainly been helpful to be able to talk to him about what has been going on over the past few months and to try to sort through things and discern the difference between side effects and symptoms and try to ascertain that fine line between suggestions and warnings on the drug information sheet.

Angela At Work
what the average pharmacist looks like: doing 17 things at once

I’ve had my fair share of bad interactions with pharmacists, pharmacists who think counseling means pointing to the information sheet and saying, “Read this.” Mostly, it’s been pharmacists who have a huge backlog of work or are used to fielding complaints on insurance or the location of the bathroom. Retail has got to be a tough environment. (I bet they feel a lot like librarians in this sense.) Over the years, I’ve had pharmacists who have recognized me from previous visits and know my name & what I’m taking. But Ken’s been the first pharmacist who’s consistently sat down with me to talk about my case and how I’m doing, why I’m taking these various meds and what is actually going on in my life medically. I know he’s lucky because his grocery store chain emphasizes care & smiles foremost and the particular location that he’s at is rarely swamped with people (or at least I never shop at those times.) I know he gets excited to actually put his pharmacist degree to good use.

But even more, I feel like I matter to him. Not just because I’m a paying customer and I come in multiple times a week. (Hello, having brain fog means not being able to coordinate that all my meds have refills at the same time!) Not just because I make all of his schooling relevant. But because I’m a person, and he cares about me and wants me to be well. And so, finally, I have someone here on my side and who’s willing to be on “the team”. And that’s why Drs. Samuel, Leo, & Mark have all heard about Ken.

Abigail

in a better place

So.. I moved out of the Catholic worker house completely. I am back in my apartment living with all my possessions in boxes, hoping that all of it will fit in the two cars that I’ll have to drive back to my hometown in a few weeks after I finish all my doctors’ appointments in this state!!

Moving out of the house was hard. And to be honest, I was really angry with how it went down. I guess I kind of spontaneously stopped living at the house. I’ll admit that it wasn’t logical; it was emotional. Still, after talking to Aaron and Timothy & Grace, I called my housemates and asked to talk about what was up and the fact that things weren’t working out. By the time we actually had a conversation two days later via text, I got a text that said (essentially), We’d love to have you here but since you’re not sleeping here any more, we have other people who want the space asap. You have 24 hours to move all your stuff. It made me mad. I mean, I guess I wasn’t living there any more. But seriously? We can’t talk about anything? It’s all my fault?

So, ummm, in between being very angry and extremely stressed out, I convinced a friend to help me with lifting boxes, and I talked Joseph into driving his van out to move my furniture. It was a stressful 24 hours, and I didn’t think that I’d have everything packed in time. None of those boxes are labeled; or, rather, I should say that they still have the labels from my move into the house and also from whoever used them before (and before that, too, for some of them!) But I didn’t put things back in the same box they came. So if it says “bathroom”, it’s probably either Bibles or dress clothes. Let’s hope I won’t need anything for a few weeks because I do NOT want to unpack and then pack very many boxes!!

I learned a lot of things from living in that house. A lot of things about myself. Some stuff about other people. One lesson I don’t think I’ll forget really easily: if you have a digestive health problem, you probably want to have a semi-private bathroom.* You can share it with other people. It doesn’t have to be a connecting bath. But a bathroom in the kitchen?? Across the entire house?? A nightmare waiting to happen. If people aren’t looking at you weird because “you were just in the bathroom 30 minutes ago”, you’re tripping over all the bikes in the hallway because you’re sleepily making your way to the bathroom in a very dark monster of a house and it’s the second time this night and you thought you had the geography embedded in your head already. You better believe that I’m looking for an apartment with a semi-private bathroom.

I was really, really angry. Especially since all the packing and the stress aggravated the breast inflammation/pain and woke up the costochondritis monster. The last thing I needed. I’ll be paying for it for a very long time. And really upset for not being heard. Do you know what helped? I wrote goodbye cards to every single person that lived in that house. I couldn’t really honestly write “thank you for your hospitality” cards. But I did get to know each of them a little and get to know what they’re each currently struggling with. So I wrote little notes that said I hope that you find peace in ____ and that God brightens the coming months for you. Something to that effect. Everyone got a different card, and I said something a little different to everyone. It gave me the closure I needed without me pretending that the whole experience was just fine and dandy. Because it wasn’t. (Some things like the bathroom situation weren’t exactly their fault. Other things probably were.) But I feel that I found a way to say goodbye and best wishes and to let them know that even though I needed to move out because it was best for me, it didn’t mean that I hated them or wanted them to be miserable. Because I really don’t.

The bottom line is, though, I’m in a better place. I am finished moving (for the moment). I still get to hang out with Timothy & Grace. Plus, I’m currently on a vacation from my real life and visiting a high school friend and her husband. They’ve got an awesome apartment. It’s really quiet. It has a semi-private bathroom that connects to the guest room. They have a piano. And, they live really close to some of my other friends. I’m happy.

Just the news for now from the person whose life never seems to have a dull moment,
Abigail

** Is this true for people who have permanent colostomies? Maybe there is an upside to that situation. Duncan, can you advise?

Act Two, Scene Two

Scene: Doctor sits at his desk. In front of him is a computer. Next to him is a telephone. In his hand is a pen. When the scene opens, he is on the phone, listening and writing. Position should be so that the audience sees the doctor and his face and his writing (not the computer screen).

Above the doctor (or perhaps off to the side of the stage) is a projected image. These images change to reflect the Voice.


Voice (from the phone): I’m sorry my life is not straightforward.

Winding roads
this sign depicts my life for the past many miles (and probably many miles to come)

Doctor: Umm, you know that’s not your fault. You don’t have to apologize.

Voice: Yes. Well, I can just make observations. And tell you them. I don’t know if they’re useful or not. I definitely don’t know what they mean.

Doctor: That’s okay. It’s a tricky situation. What’s going on?

ATM Machines in Panama
let’s keep trying cards until something works!!

Voice: Well, I’m in a lot of pain: here, there, and everywhere. And I’m really exhausted all the time. Like I sleep from 11pm to 7am. Then I eat breakfast. Then I’m back in bed until at least noon. It depends on my school schedule. And, oh, did I mention the chest pain? That bothers me. It makes sleeping difficult. Not in a dangerous way. Just in an annoying way.

IMG_8534.JPG
the doctor is probably rolling his eyes now

Doctor: Yes. Ok. Let me think. Well, it could be a lot of things. Have you thought about medication W? Because it could help with sleep. Or medication WW? Because it could also do something good for you. You know, if you tried it over the weekend when you don’t have to worry about school.

Voice: Well, I guess I could try medication W over the weekend. I want to maintain things at a plateau for the most part so that I can focus on reading and studying.

Doctor: I still can’t believe how many books they expect you to read this semester. That’s… amazing.

Hanging books detail
studying, studying, and more studying

Voice: Yes, it is. But I’ve spent a large part of my life preparing for that. So at least I know I can meet the challenge. Not like this medical stuff. That wasn’t part of the plan.

Doctor: Yes. Well. Yes. Definitely. Ok. So how about you try medication W just for the weekend…

Curtain.


So went my conversation with Dr. Leo yesterday. Frankly, I’m impressed that he didn’t hang up the phone or start rolling his eyes at me. (Well, I can’t say for sure that he wasn’t rolling his eyes, but it didn’t sound like it.) Even when I didn’t know how to describe things or I just wasn’t ready to try a new treatment plan, he was patient and listening, wanting to help me however he could.

We ended up having a fruitful discussion about diagnostic options regarding the small intestine bacterial overload. We talked about the treatment so far, what we could hope for in the future, what the “typical” patient response is, and what my options are looking toward the future. I think we have a concrete plan based on my life at the moment, his knowledge and understanding of the situation, and what my body is attempting to tell us (and I’m trying to observe.)

All in all, it was a very useful conversation. That moment when he told me not to apologize for my non-straightforward life? That set the tone for the whole conversation. Dr. Leo acknowledged the reality that my life is not where it ought to be and that I might need some help rectifying that. But he was quick to assure me that I’m not at fault for that. It made it so much easier to give him information even if I didn’t know it was useful. I felt at peace that he wasn’t sitting there marking a tally for how many pointless things I said and how many actually useful things I noted. Rather we were problem-solving together.

Just another day in the life,
Abigail

Act III, Scene 1

Setting: Classroom. Lights are off, window is open so the breeze is blowing in (and the chimes can be heard loud and clear.) The teacher and his students are seated in a circle in student chair-desks. The scene opens with the professor talking.

Professor: Ummm, your proposal is great, Abigail, and you ask a lot of intriguing questions. Your topic definitely has a lot of promise.

Alert the press!!!!!!!!! A professor in Abigail’s department read something dissertation-related. And, more importantly, he liked it!!!!!

Professor: However,…

[Aside: you knew there had to be a “however”.]

Professor: However, this proposal is sketchy at best. It’s not really clear what you’re doing or how you’re going to do it.

Abigail: Uh huh.

Professor: You need to talk more about x and y and z (which incidentally will probably show up in other sections of your proposal.)

Abigail: Yes.

Professor: I’m excited to see where this will go [thinks/mutters to himself] once I know what “this” is.


Problem for Abigail: I’m not really sure what I’m going to study. I feel like my project is an amorphous blob that sits out in a specific location. I know where I want it to be and a few characteristics that it has to have, but mostly I’m not sure how to be painfully specific about describing an amorphous blob. Maybe I should put a disclaimer on my dissertation proposal like this:

DISCLAIMER: This dissertation is in its early stages. It can be likened to an amorphous blob. I know how to calculate the volume and the surface area and the magnetic flux through the volume but I cannot punch it into my calculator because I have not yet determined numerical values for anything. AKA this is a project in the works. Please do not ask me why I do not have a book contract yet.

The upside???? This is an actual graduate student dilemma… not a why-is-the-school-bureaucracy-making-my-life-extremely-difficult-AGAIN?

And you know what? I think I’d much rather deal with the tricky issue of figuring out how to specifically describe an amorphous blob than argue with yet another university administrator over course registration. At least, I actually signed up for this task!! (And, at the end of the day, I’m the only person who can really describe the amorphous blob anyways; after all, it’s the one in my head.)

Another day in my life,
Abigail

Almost there!!!

It’s been finals season here in the land of graduate school, and I’ve been buried under an avalanche of papers to write and papers to grade. I’m still asking big medical questions, my chronic illness is still forcing me to spend most of my time in bed staring at the ceiling, and the pile of clean laundry is still sitting in a giant pile on the floor because I haven’t had the energy to put it away.

The good news is that I’m finally seeing the light at the end of the tunnel. All I have to do is to write a ten page paper on a topic I haven’t even begun to think about yet. And I have to finish that by the end of the week. And then I’m done (for the term)!!!!!!!!!!!!!!!!!

Catch up with you soon,
Abigail

I can’t help it

https://i0.wp.com/media-cache-ec4.pinterest.com/upload/16044142394282701_Tg0FXasY.jpg

I’m truly thankful for all that God has done in my life, particularly this year. But sometimes, I can’t help it. I wish it would all just go away.

Having a chronic illness is hard, folks. You can’t take a vacation from it. You can’t say, This is beyond the scope of my practice (or interest or time). You can’t even protest and throw things at the person or thing responsible for it all starting because (at least for me), there isn’t really a solid cause or moment it all started.

When people ask me what I want for the holidays (or my birthday or graduation or any occasion for that matter), slaying of the monster of illness still tops my list. Here’s the beginning of my wish list for the year:

0. feel soooooo much better permanently

1. get answers as to the root cause of what I have and make headway on a treatment plan

2. to be surrounded by good friends and amazing support through everything, the good and the bad

Abigail

Vintage Crafting

Reading and reflecting on living with a chronic illness, I realized that I need other things to focus on besides the drama-laden stuff in my life. One thing I have definitely enjoyed very much has been vintage crafting.

A few words of definition for the uninitiated:
vintage: something that belongs to a different era; (note: people who study history tend to be obsessed with this)
retro: something for which an aspect of it is vintage but it has been recreated with a modern twist
repurposed: something that had a particular use and has been made to function in a different way
crafting: any creative venture that involves imagination and materials

Here’s a glimpse of my most recent project. It’s a Christmas gift for Tabitha.

the beginning stages: cutting fabric with a pattern from 1975
I’m making view B, which is all the way on the right
the main skirt body; nice and twirly
Greetings from Paris! (in Spanish of course… what other language would you use?)

I’m guestimating Tabitha’s size. She says that she wears a size 4, which in 1970s sizing would be close to a 26.5? We’ll see. That’s why I haven’t added the waistband and the hem yet. If I need to drastically alter it, I want it in a stage where that’s still relatively easy. Next time we meet up, I’ll let her try it on. And then, I’ll finish it in time for the holidays!! Because, naturally, what screams “Merry Christmas” better than a skirt that says “Greetings from Paris” in Spanish.

Just a glimpse of my life when I’m taking a break from the rest of my life.

Abigail Cashelle

Act Two, Scene 1

Setting: New scene. Doctor’s office: very narrow, very crowded. To one side is a book case filled with books on chronic illness & childhood. There’s just enough space for the door to open, a patient to sit, a doctor to sit (at his moveable computer podium), an air vent to be on the floor behind him (usually with his briefcase covering it) and then a window to let in some light.

As the scene opens, the physician opens the door and motions the female patient to walk into his office. As they’re getting settled into their assigned spots, the conversation opens:

Doctor: I really like your bag. What’s on it? I don’t usually notice bags, but I really like yours.
Patient: Thank you. (Holds book bag up.) It’s pictures of old sewing patterns.
Doctor: Very interesting. I really like it.
Patient: Thank you. I made it myself. (thinks to self: This is the first time anyone’s noticed it even though I made it three months ago!!)
Doctor: Wow. Impressive. You have a second career right there if history doesn’t work out. Not that it wouldn’t or that we would need to talk about that… but very nice.

As conversation continues, move spotlight to stage left where another doctor sits at his office, sifting through information regarding the same patient’s case. (Be dramatic and use creative license.) On his computers are emails from the patient regarding inflammation, depression, fatigue, lack of appetite, together with his replies of suggestions of medical follow-up and symptom management. On his desk are papers from Australia regarding a new diet interspersed with papers on his main research topic: the esophagus. Throughout the scene, he continues to glance at the clock and the calendar, wishing that healing didn’t require quite so much patience. And, is there anything else he’s missing?

Move spotlight back to center stage:

Doctor: You’ve been diagnosed with Ehlers-Danlos syndrome, right?
Patient (looking confused): Yes?
Doctor: Given your symptoms… Other patients of mine who have this… There’s this paper that I was looking at earlier today… You have the diagnosis, right?
Patient: Yes, but it’s one of those that’s contested. Some people think I have it, some don’t.
Doctor: Either way, it might be helpful to have a term that connects all your symptoms together. And Ehlers-Danlos is systemic. It might explain the aggregate of your symptoms. But it definitely would be something you could give to disability services or other people at the university and they would understand as a tangible disease. It make might it easier for them to “understand” and then accommodate you.
Patient (not convinced): Ok?
Doctor: Let’s see. Here are some of the suggested lifestyle amendments: be active, proper sleep hygiene, hydrate often, high-salt diet.
Patient: Yes, those all sound familiar. They’re all things I try to do (in between all the other things I’m trying to do!)
Doctor: Why don’t I print this paper out? We can each read it, and if it’s applicable to you, if it resonates with your experience, then maybe we can use it as a way to deal with disability services. Plus, it might help with an actual treatment plan. Sound good?
Patient: I think so.
Doctor: I can write a letter (if we decide we need that) that says you have this disease. Of course, they may want a letter from a rheumatologist who actually specializes in connective tissue diseases, but I’m more than happy to say that you have this disease.
Patient: Thank you very much. I’ll read the article and be in touch.

Curtain.

This is more or less how my visit with Dr. Samuel went down today. I’ve been really depressed lately what with family visiting, church drama, fighting for anti-discrimination with the university (and losing), traveling, etc, not to mention medical stuff!! So we talked through all of that (it took forty-five minutes!) and then talked about bigger issues like treatment plan and advocating for myself.

Talking about sewing and hobbies at the beginning calmed me down a lot. It’s been really hard to juggle all the different things that I’ve been thrown this past month, let alone figure out what to do about it. It was nice to talk about something straightforward, something I already succeeded at, and something that was about me as a person. I love the feeling of connectedness that comes when I talk to someone about things I love (and when they truly listen), and I really want that in a doctor-patient relationship because I feel safe and cared for, just on a human level.

It’s a bit amusing to have homework from a doctor where I’m reading a medical paper on symptom management. But it reminds me that as a chronic patient, you become a member of the team. You’re not a layperson visiting a magician. You’re a team member contributing data and observations in a group setting where the medical professionals listen and assess. All members ask questions, all members suggest diagnoses. All members tap into their experience (whether personal or professional.) All members have work to do outside team meetings. And it all works a lot better if we know each other, just a little bit. Because we’re all in this for the long haul.

~Abigail Cashelle

P.S. I have to pick up Tabitha from the airport right now, but hopefully I’ll post a picture of the awesome book bag soon. 🙂