You know you have a sustained lack of appetite if…

  • you forget what hunger feels like
  • you feel this deep pain in your body and your first response is to stop eating; after three to five days pass, you realize that what you feel is actually hunger and the correct solution is to eat; except now your body can only process small amounts of food at a time
  • after such a realization, you remember that this entire sequence has happened at least once, and one time, you and your psychiatrist just started laughing at the ridiculousness that is the observation that a person forgot what feeling hungry meant
  • you are best friends with your GI doctor whose number one metric is not your blood pressure nor your lab work but your weight, fair and simple
  • the best part about breaking up with the boy is that you no longer have to deal with his annoying habit of forgetting to eat lunch, which had meant that during several dates you had to sit in a cafe and watch him eat lunch while trying not to have a panic attack or throw stuff at him
  • when you were dating the boy, you let him take you out to eat a grand total of ONE time (in a two month period)… and you almost bailed from the ice cream shop because it was so overwhelming
  • your GI doctor found you formula to supplement your diet when you are in so much pain that thinking about food is off limits; it’s marketed for toddlers who suffer from “failure to thrive” (and you think it is a brilliant idea)
  • your GI doctor loves your teenage sister because when you lived at home, her favorite thing to do was knock on your door and ask you if you ate recently
  • your local friends know that you’re going through a hard time so they invite you over for dinner or take you out to eat; they let you ramble while they’re eating but they tell waiters to go away because it still looks like you haven’t eaten anything and part of being your friend means making sure you’re properly nourished
  • you go to church potlucks but half the time you just look at the food and don’t take anything
  • if you eat dinner at someone’s house and actually like the food, your friends hand you leftovers because it’s such a rare occurance
  • people ask you what your favorite dish is and you haven’t the slightest clue
  • eating is a chore like brushing your teeth; you’re supposed to do it on a regular basis, but technically it’s still optional
  • your doctors have categorized ice cream as a healthy food because it has calories and you need them
  • you make dinner but by the time it’s cooked it’s the most disgusting thing you’ve ever seen and there’s no way you’re even eating it
  • you look at the clock and realize that it’s bedtime and you haven’t even thought about dinner
  • sometimes you start to eat dinner and after an hour and a half realize that you’re never going to eat the food in front of you and throw it away; then you realize that while you’ve accomplished something (throwing away the food that you were supposed to eat), you still haven’t accomplished the original thing you set out to do which was to eat dinner
  • when people ask you what kind of cake or food you’re going to serve at your wedding, you tell them that (a) you’re not getting married yet and (b) you would prefer to skip the food altogether
  • when you tell your GI doctor that you have a new boyfriend and that means you need his help because food comes up a LOT when you are dating, he thinks about it and says that while usually he would encourage you to just avoid encounters with food, he could see how figuring out how to deal with it might make social interactions easier so we can brainstorm. He also recommends that I give the boy time to adjust (aka this problem will not just go away.)
  • people feel bad when they learn that you have food sensitivities and can’t eat food with gluten or dairy in them because now nothing they’re serving for the party is friendly; no problem, you think, it wasn’t like you were about to eat anything anyways; plus, eating is a need, not a want
  • Thanksgiving and Christmas are holidays where you listen to older folks tell you their life stories and when you volunteer to do the dishes (not holidays where you cook or eat or otherwise think about food)
  • people ask you what you like to order at a coffee shop and after the longest time you answer: water
  • when people invite you to happy hour, you kindly explain to them that you can’t drink alcohol while in your mind you know that any activity that lasts for an hour and involves food is the opposite of happy and why would you want to spend your free time doing that anyway?
  • people ask you what restaurants are good in the area and you have no idea but can point them to the good gas station, the local library, the best shopping malls, the local bookstore, and even the ideal backdrop for photos
  • the bottom line is that you think about food as little as possible and only as a problem that has to be tackled

So, yeah, I suffer what medical professionals properly term as “anorexia”, that is, a sustained lack of appetite.* My body does not digest food properly (yay! functional GI disorder). Therefore, food often leads to more pain, which leads to an inclination to avoid food altogether. Eating is the opposite of relaxing and is simply something I do only because I have to. I’ve been dealing with this since 2007 at least.

Dr. Leo and I have put our heads together and decided that we can be a little bit more proactive about managing the situation. I’m already on an antispasm medication (dicyclomine) that’s specific to the GI tract. That’s helped a little bit. The formula has been a lifesaver for when I’m really busy or when I’m emotionally exhausted but still need to eat. But like the rest of my disease, there are seasons. Some months I struggle with one thing more than another. And food is currently a big issue for me. I can’t take more medication because I weigh so little to begin with, and my body doesn’t digest medication very well either.

Dr. Leo has given a big thumbs up to all my local friends who have been having me over for dinner and dropping off snacks and just generally making sure that I’m doing okay and that I’m still eating. We’ve resigned ourselves to the fact that sometimes that means that I’m using the formula, which isn’t ideal but will work for now. And he’s also enrolled me in a psychotherapy program specifically targeted to anxiety related to eating and digestion. It won’t make the underlying problem go away, but perhaps there are some techniques that I could learn that would help in those moments when it all gets overwhelming and I hit fight-or-flight mode.

They say what doesn’t kill you makes you stronger. I’m still not sure that I believe them. But I do want to gain a semblance of control over my life again. And not panicking because there’s an activity involving food would be a nice change. Dr. Leo calls it better quality of life. And as long as someone else is helping me fight, I can see myself taking this on.

With hope for what the future can bring,
Abigail Cashelle

*In medical parlance, “anorexia” refers to a sustained lack of appetite. A specific type of anorexia known as “anorexia nervosa” is commonly abbreviated as “anorexia” by lay persons. Anorexia nervosa specifically describes an eating disorder characterized by excessive weight loss and unusual concern for body image.

Was there any warning?

It was just another Lord’s Day morning meeting. Well, maybe not just any meeting. I have to admit, I was sort of having a panic attack again. So during the sharing, I wasn’t really paying attention. Until Grandpa stood up to share. He got really excited. He had different sections stand up and repeat what he was saying. It was all really exciting… until he fell over onto the floor. Yeah. Dramatic.


I went to the ER to keep his wife company. I guess I feel pretty comfortable in medical settings these days, and I figured that it can be helpful to have someone young there who can get food from the vending machine or track down a cup of water, etc. Mostly I just didn’t want her to be alone. I know that sitting in an exam room waiting for things to happen is the loneliest feeling.

At one point, an ER doctor came by and asked Grandpa if there was any warning sign that he was going to pass out. His wife said, well, she heard the defibrillator kick in at the same time that he passed out. (He has an implanted one. It probably saved his life.) And Grandpa said, No. One second he was talking in church, and the next second he was on the ground.

No one asked me anything, but I couldn’t help but add to the conversation. Actually, there was about five seconds notice. He put his hand on Joseph’s shoulder. And then he fell. Backwards. Everyone looked at me and suddenly remembered that that had happened.

Which meant that he felt lightheaded. Which means that he passed out because his heart rate went to zero (not because he became too agitated.) That one little piece of information gave the doctor enough data to check a few additional things. And later when a resident read the data off the defibrillator, it confirmed my observation.

The boy says that I have a knack for observing small details. Perhaps I do. I like to think that that’s what a historian does all day — make sense out of nonsense by keeping track of details and optimizing them. But I think part of it is also those days and years spent in doctor’s offices. That gave me the courage to speak out. Just in case that additional information mattered. Because every piece of data is important… even something contributed by the designated “silent” friend in the room.

So grateful that my patient experiences are being put to good use and that Grandpa is going to be okay,
Abigail Cashelle

I Hear Hope

It was another visit with Dr. Mark. That pesky breast inflammation had come back to haunt me. It was so painful that I was desperate for a solution, not so much for the pain, but for the fact that the inflammation was getting out of control. I also wanted to make sure that my heart was doing okay.

We had the typical exam and talked about options. What about this medication for pain? no. What about exploring an anti-inflammatory medication? maybe. What about something topical for pain? no.

Finally, I asked him. I know you listened to my heart with a stethoscope. Did it sound healthy? I don’t think I’ll forget what he said:

Dr. Mark: Abigail, your heart sounds happy. And… what’s the word? Hopeful.

Abigail: You can hear hope with your stethoscope?

Dr. Mark: I don’t need my stethoscope for that. I can hear hope in your voice.

And that’s a moment I never want to forget. Even though my life is more crazy than I would prefer, I am hopeful, and he heard it.

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

Severely Depleted Currency

I had an interesting phone call today with my physical therapist. (Did I mention that I started physical therapy??) He was following up from an email I had sent him earlier this week, so his call wasn’t surprising. But it put into spoken words one thing I’ve been struggling with for the past few weeks: having to blindly select from a bunch of options.

The current issue is whether or not I should continue physical therapy and if so, why. In other words, what is the goal of physical therapy for me specifically?

I think my therapist became pretty defensive about how therapy could help things get better and that change could take a while. Perhaps he thought that I was concerned that therapy was making things worse.

But after a lot of time thinking through it, I think I’m grappling with a totally different issue. Is physical therapy really a priority for me right now? Time, energy, and money are all limited for me. Some of those variables I control; most of them I don’t. My question is not whether or not physical therapy is contributing to the problem, but whether it’s the best use of my resources at this point.

Right now, I’m only able to go to work. All the rest of the time I spend in bed, mostly asleep. If I’m lucky, I get to watch TV, do laundry, eat meals, read my mail, etc. I do get out to weekly counseling and now physical therapy once a week. It’s a major goal of mine to make it to at least one church meeting a week, but it doesn’t always happen. And it sucks because that’s really important to me; even in graduate school, I made it at least once a week.

So if we think that the long-term benefits of physical therapy are barely measurable and I can’t get out of bed for almost anything, is it really that important for me to be in physical therapy right now? My youngest sister would argue that it’s more important that I actually eat three full meals a day and that I eat those meals on a regular schedule. (Otherwise, it’s 4 pm and she’s knocking on my door wondering why I haven’t eaten yet.)

I think that’s one thing the doctors at the Clinic of St. Jude haven’t picked up on yet. Lack of proper stamina is a huge component of this. They’re very cognizant of a central sensitivity syndrome, which implies that pain is a big factor and that things cannot be done in a jerky fashion. What they seem to be missing though is that there is severely depleted currency. And that is a determining factor in everything. As much as outsiders might be tempted to ignore it, for the consumer it’s a real limitation.

The nurses and staff at the Clinic of St. Jude encouraged me very much to take ownership of my treatment and my illness and not to let professionals boss me around. They told me that a patient knows what is best for him and his needs. Only you can know that. That was very helpful.

The tricky part is that I’m being thrown a lot of options. Most of them are being proffered by people who aren’t sure what will be useful but are trying to be helpful. And my limited currency forces me to choose. I feel like I’m making these decisions in the dark, and I’d rather make informed decisions since many people (including medical professionals) will be demanding explanations for the decisions I make. I’ve learned to ask a lot of questions and seek out as many resources as I can. But sometimes it’s helpful to have practitioners talk to each other about what’s really going on. Because they’re trained in the vocabulary and think of things that I don’t even know about. It’s been tricky though having to convince people that I’m trusting and relying on their expertise, not questioning it.

All in a day’s work,
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

In Which Molly Goes to the Clinic… and We Learn Some New Vocabulary

Alana and OceanBurning have been accompanying me to clinic all week, and I didn’t realize until yesterday how valuable a role they played. Yesterday I was by myself and had two consultations(!!) back to back at the clinic. I hadn’t asked anyone to come with me, so I took Molly with me instead. At first, I was a bit self-conscious about it, but then I figured that anything beat crying on the floor in the bathroom while throwing my cell phone at the wall because Aaron lost his phone and I don’t have any way of calling him (which is my typical recourse for crying on the floor in the bathroom.)

faithful MollySo I brought a bag big enough to fit Molly into, and then I brought Molly with me to the Clinic of St. Jude. I got some strange looks from people, but no one said anything. Most of the strange looks were people thinking, oh, that’s different rather than there goes the weirdo (fortunately.)

And it turned out that Molly was a great friend to have yesterday. I spent over one hour waiting for my PMR consult. During that time period, I would have paced the waiting room floor except that I was really exhausted, and I didn’t want everyone else in the waiting room to have to endure my nerves. Molly and I worked on browsing the internet, reading books, eavesdropping on conversations, skyping my sister who lives in Europe, and periodically bothering the receptionist and asking her random questions. We learned (from eavesdropping) that retired truckers who enjoy driving to Alaska can also be really loud and that grown men who are separated from their wives (but not yet divorced because they’re too lazy to get around to it) tend to also have mothers who are very loud and nosy and accompany them in the waiting room. We would have been more sympathetic if they had not fed our growing insecurity about being in the clinic for (seemingly) pointless consultations. Oh, and by “we”, I suppose that I actually mean “I”. Molly is pretty chill about everything and everyone.

Molly did enjoy the fact that every consultation room at this clinic has a private sofa. (Seriously, some doctors’ offices (like the XXXXL exam rooms!) should pick up on this feature. Anyhow, during the actual consultations, she just sat on the sofa, patiently waiting for everything to be over until I needed her again. The PMR doctor did ask me at the end of the consult if I bring my pink teddy bear with me everywhere. I said, Only when I’ve been in clinic for far too many days in the row and I just can’t handle it any more. He was cool with that, and we were cool with him!

We learned some interesting things in our visit to the clinic. Pieces of the puzzle started falling together yesterday. It seems like we had all the pieces already (or most of them). But we just needed the right people to all put their heads together sequentially to notice that some things actually went together. Dr. Leo was a big help with that, as St. Jude’s coordinating physician kept going back to him to review things and ask more questions about my previous care. I’m really, really grateful for his help with that.

More details in the coming days as I continue to process and think about long-term implications of new ideas. I’m driving back home on Monday, but I’ll still be on leave so I’ll have some time to think, some time to rest, some time to be on vacation, and some time to have wifi without driving around town trying to track it down! (Abigail vacationing without wifi does not a good combination make.)

Until next time,
Abigail

Getting Nervous…

I just got the patient itinerary for my first week at the Clinic of St. Jude. I’m really nervous now. Actually, I’m freaking out. My coordinating physician down there already has me booked for the first five days with lots of testing and consultation. (Well, I knew that was going to happen but now it’s in solid print.) I can’t believe that I’m going down there all by myself and am going to have to deal with this 24/7 for days on end. I can’t believe that I’m going to be in a new place with new doctors doing all this stuff. I feel overwhelmed already.

I’m trying to remember that I have friends there that will support me. Alana lives there, and so does Bethany and her husband. Other friends live close by. One of my best friends from elementary school(!) is doing her medical school rotation in town just for those three weeks!! And I know my coordinating physician personally.

I can do things like tell them that fasting from midnight to 4:00pm two days in a row is just not going to happen. I can make people actually read my records and not just endlessly rerun tests that have already been done (just for the sake of doing them again.) I can (and I will) decline certain treatment “options”.

The thing is though that all of that takes a lot of energy: physical, emotional, and mental. I’m not even there yet, and I’m already overwhelmed.

It’s so ironic that I have to be this involved in the management of something that’s out of my control.

Please pray. A lot.

Thanks,
Abigail

Medical Records (Part III)

In thinking about gathering medical records and keeping track of everything, I realized that I have found one program that’s really intuitive and that’s become second-nature for me.

If you’re female and have menstrual cycles, I’ve found “Monthly Info” to be a very useful website for keeping track of that information. You can register for free, put in the beginning date of each cycle, and it conveniently calculates the average and range of your typical cycle and predicts when your next period will start. And, importantly, you can export or print this with you and take it to your next doctor’s appointment. All of this is completely free. It takes about one minute to register and about 30 seconds to update every month.

I used to keep track of all of this in my planner. (Where “all” means circling a date every month.) But that’s hard to show a doctor, right? Now I just print it out. My gyn loves it. It’s there if anyone needs it. And I put in all my records dating back to 2010!!

Just some thoughts on the topic,
Abigail

P.S. About 200 pages of records were sent to the Clinic of St. Jude & my half-inch binder is filled to the brim. And I still have to pick up records from one more doctor and one more radiology center!! One of the clinics asked if I had a large file. She said that a “large” file happens when someone has a lot of tests or is hospitalized. Well, meet the girl who challenges that definition. My file was 128 pages at that clinic and it’s all from clinic visits and labs. No lab that was done there took longer than 30 minutes. (The ones that were hours long took place at a different clinic.) Abigail buck tradition AGAIN. Of. Course.

Medical Records (Part II)

Following my first post about medical records, I have made some progress. I’ve also discovered how much work I have to do. For example, I have images stored at no fewer than 8 facilities (and that’s only the ones that I remember!)

1) my records my way: I decided that since these are my medical records and they are going to dictate how I am treated, I get to make all the big decisions. I got a green half-inch binder (because I love half-inch binders and I’ve never seen a green one before.) I also got divider tabs that you can write directly on. I had them in elementary school and I LOVED them, but my dad never let me buy them again. He said the ones that you can print out labels were better. And I put everything in sheet protectors. Because I love sheet protectors.

2) paying for records? I’ve also successfully gotten around paying for records but putting down “for continuing care at the Clinic of St. Jude*” and no one has questioned that. Plus I carry around my intake letters from the Clinic of St. Jude that say that they want you to bring your own records (as opposed to having your records transferred.) {St. Jude is the patron saint of hopeless causes, and I’m giving the clinic I’m visiting the code name of the “Clinic of St. Jude”.)

3) sorting: I’ve decided to sort the records by anatomy because I’m fairly certain that no sane doctor is going to confuse the foot with the heart. (And he does, we have much bigger problems.)

4) prescription records: for some reason, I’ve never had a consistent way of keeping track of which medications that I’ve tried and why I didn’t like them. This has resulted in me retaking medications only to remember why I stopped talking them before! Somehow keeping track of it is stressful, so I’ve just been lazy and kept every single receipt and medication brochure from every prescription that I’ve ever filled since 2005. (It’s a huge mountain of paper, and no sane person wants to tackle that.) Well, I asked and Ken’s colleague was able to pull up every prescription I ever filled at his pharmacy since 2009 in about 5 minutes. And it’s an easy to read table of information that has most of the pertinent information on it. I started looking up how to get records from other pharmacies (namely the pharmacies I went to in graduate school), and it turns out that it’s not that hard. Just two more stops to make.
5) in person: Everything has to be done in person. It’s annoying, but it’s also kind of better. That way, they check your identification, and only certain people can pull up your entire medical record. Plus, they do it while you wait, so you don’t have to worry that your chart is just going to be out for every random passerby to see.

6) electronic records: the beavers and armadillos actually use electronic records; (I was there when they switched over!!) and so I can actually walk away with a CD that has everything on it. No more requesting records from every single department I ever went to. (which would be ridiculous.)

All this is to say that I’ll go to the Clinic of St. Jude with a green binder full of records in sheet protectors plus a stack of CDs with images and electronic records on them. It’ll still be cumbersome, but that’s the reality of having a mysterious chronic illness for almost a decade. And it definitely beats trying to request them while I’m at the Clinic. Because that could take forever, and there’s no way that I’m voluntarily repeating some of those tests. Those were once in a lifetime experiences, thank you very much.

I have a list of places to stop by when I visit Grace & Timothy this weekend. There’s six locations plus I have an appointment with Dr. Mark to talk about visiting the Clinic of St. Jude. I still have at least one hospital, possibly two, to visit in my hometown to pick up records. But I’ve already pulled together images from four facilities plus pharmacy records. I just need to remember to call Dr. Bill’s office and have them send me the recent blood test results!!

It’s still a bunch of work, but I’m seeing the light at the end of the tunnel (I think).

Abigail Cashelle