Tag Archive | life with a chronic disease

the tables have turned (in a good way)

Now that I’m on faculty at a university (can we just pause and reflect on how amazing that is??), I have a student in my class with a significant chronic illness. She came up to me with some paperwork from the Disability Office asking for some specific accommodations. Now accommodations are annoying to teachers, and I get why. You have some great plan and vision for your class, and all of a sudden some random person comes up to you and says, Sorry. Mandatory change of plans.

But I looked at her sheet and listened to what she had to say and realized that she wasn’t asking for a whole lot. In fact, she was asking for exactly what I asked the ravenous lion for on my very first encounter. She asked for a flexible attendance policy. Attendance is mandatory in my class. You can miss up to 3 classes penalty-free, and attendance counts as 10% of the grade. That’s bad news if you have an unpredictable chronic illness.

What made me really happy was that I was able to sit down with the student and talk through some of the logistics with her. I told her that I was more than happy to give her the full 10% as long as she realized that she was fully responsible for all the content in the class. If she missed a lot of classes, it would be a huge challenge to pass the class. (So it doesn’t really give her much of an advantage.)

But mostly we just talked about life with a chronic illness. I asked her if there was anything she wanted me to know about her illness, anything that I could do to make things easier or intervene in the case of an emergency. I told her that I myself have a chronic illness and am familiar with how scary that can seem to other people. And that secret made her really happy.

She said that most people are freaked out when they find out that she’s not healthy and immediately want her to vanish. And so she spends a lot of time thinking about accidentally making other people feel uncomfortable and how she can avoid that. She was really happy to meet a teacher who felt comfortable talking to her about it and who was immediately on her side. She said that she felt so much safer in the class.

I’m so happy that she found me approachable and understanding. I’m still really nervous about my illness and my lack of a Ph.D. in the department and haven’t told anyone at this university about my illness besides her. I know exactly how she feels because I live in that exact same world. But I’m glad that I could make her feel a little more at home in school. And it gives me a comrade too. Someone else who knows that I’m also struggling some and that sometimes, things are not what they appear.

Abigail

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

CPBC: The Fault in Our Stars

Molly and I snuck out tonight and saw a movie. I’d been hoping to do something really grand for the 4th like go to a waterpark or visit some friends. But my hip is majorly hurting me, it was supposed to be storming, and my friends are (mostly) out of town. So a movie it was.

We saw The Fault in Our Stars based on the novel by John Green. It was beautiful, very heartfelt with really amazing acting.

The premise goes something like this: a teenage girl has been diagnosed with terminal cancer… in her lungs which makes it difficult to breathe. She’s convinced that the only point to life is to make her parents happy because if she dies, the meaning of their life will die with her. Her mom forces her to go to a cancer support group meeting week after week where she meets this teenage boy. She falls for him because he’s handsome and smart and kind of dangerous (and oh he also has cancer but he’s in remission.) The story follows them as they fall in love and are destined to live happily ever after until cancer gets in the way of destiny. Something like that.

I like movies about characters struggling with illness because it’s something I spend a lot of time thinking about. The Fault in Our Stars has some amazing jokes about being a chronic patient that are really relatable, like how people always tell you that you are brave for living with illness (is living with an illness a choice?) and you’re strong for saving that this pain is only 9 out of 10 (when all you’re thinking is how is pain quantifiable? and there has to be something worse than this even though you really wish there wasn’t.) The problem is that they tend to have cheesy endings. And usually someone ends up dead. Like A Walk to Remember or The Sisterhood of the Traveling Pants. And it’s all about survivor guilt and the legacy that people leave when they succumb to illness. Or Dear John or The Vow where the premise seems to be about letting go of the past you can’t change and holding on to the hope of the future. They make for great movies but rather cheesy realities. Even though some of them are based on the lives of real people.

TThe Fault in Our Stars has its fair share of movie stereotypes. But it has sufficient redeeming moments to make it worth watching.

  • Like the moment when Hazel confronts her parents about their motivation behind her positive prognosis. It turns into a conversation about how her mom is going to continue to live a purposeful life even after she dies.
  • Or when Hazel tells her dad that it’s not fair to Gus to be his girlfriend, and her dad tells her that it’s not fair to be her parents either and that they’re thinking of abandoning her on the sidewalk outside an orphanage and just walking away so they can live the life that they were supposed to live. For reals. Not even kidding.
  • Or what it means when two (or three) broken people support each other and lean on each other and face their fears together.
  • Or what happens (spoiler alert) when someone dies, and it’s not the person that was “supposed” to die. What does it mean to walk in the shadow of death? How does a dying person survive?
  • Why is it that the simple platitudes that are all around us never seem to bring us any comfort? At “that person’s” funeral, Hazel makes a comment that funerals are really to comfort the living, not to speak to the dead. And sometimes that means ignoring the truth and sugarcoating the past because it’s easier to swallow.

Oh, and the best part, egging the car!! Because I’ve definitely like shattering something. (But the stupid chronic fatigue syndrome keeps me from ever actually getting out and being destructive.) And because the last I thought of when he said, Do you have $5? was that that they were going to egg a car. Plus the line: Between us, we have five legs, four eyes, two and a half pairs of working lungs, and two dozen eggs. So I would suggest you get out of the way.

There were definitely parts of the movie I didn’t understand. And parts of the movie that I would have left out. But I could feel that the movie (or the storyline at least) was written by someone who had passed through the loss that comes with chronic illness and comes before death. And now that I think about it, it makes sense. John and Hank Green are a working example of two brothers supporting each other, making up for each other’s deficiencies, and supporting each other’s curiosities. Hank’s been very frank about his long journey with Crohn’s disease and the way in which society affects us and we them. It’s lovely to see John’s perspective on the issue, particularly in the form of entertainment.

I might just have to start reading the book! Molly, I sense a visit to the library or the bookstore in the very near future.

Abigail

In Honor of Robert & Heather

It’s interesting how citizenship in the kingdom of the sick works. Almost always you get inducted without permission (or even your knowledge) and citizenship is irrevocable. With time comes knowledge that only an insider can gain. As time passes, one becomes more and more connected to other citizens even if your journey to citizenship is vastly different.

I write today as part of the effort to give a voice to those who have fallen victim to asbestos poisoning. Heather asked me to spread the word about mesothelioma, a rare and deadly cancer caused by exposure to asbestos. What she didn’t know was how close to home this hits.

As a young high schooler, it was my first real connection with death and mortality. I remember visiting my friend’s house one summer and spending a lot of time with her family. I remember being there every day for a week, and laughing and making fun of her dad who was so tall that he had to duck to come through a doorway. We even have pictures of our two families together.

I later learned that he got diagnosed with mesthelioma that week. It was the beginning of a very difficult journey for this family. Robert was given only months to live and deteriorated very rapidly. At his funeral, hundreds of people talked about his service to the church and to the community. I knew him as a hilarious father and a Sunday School teacher, but I realized that there was a whole other side of him that I never even encountered. I remember learning that he was exposed to asbestos as a high school graduate when he spent one summer working in a warehouse. I remember wondering what he did to deserve this. Did God not reward those who were hard-working and God-fearing? How could this illness so insidiously break up this family? How could someone who wasn’t even “old” die?

I wish I could tell my young self that that’s not how life works. Doing good and being pious don’t guarantee immortality. As humans, our days are numbered. It’s more about making the days we have count than the quantity of days we have. Citizenship in the kingdom of the sick doesn’t come by choice. We don’t have control over when we are naturalized and why. Sometimes there are things that could theoretically be controlled (like exposure to asbestos). Sometimes deficiencies are in our genes.

Today I choose to remember Robert for who he was and for what he did for me and for my friend. I encourage you to take a look at Heather’s story and become familiar with the continued presence of asbestos in our life. Most of all, know that illness strikes all kinds of people in many different ways; every one of them could use the support & encouragement of community.

From my heart,
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