Tag Archive | life with a chronic disease

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

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

It’s a Sign…

I was at Dr. Bill’s office today (the doctor with the duck). I had asked the receptionist to make a note on my chart that I was losing my voice. So naturally, when Dr. Bill came in today, he asked me about my voice and whether I thought I had a cold. I started answering his questions, and then rapidly backtracked and said, Well, that’s not why I’m here though.

Thinking back, it’s kind of hilarious. I think I have a cold of sorts, and talking constantly at work is not helping. Plus coughing sometimes gets scrambled into choking (stupid tissue refusing to work properly?) but whatever. It’s just a cold. It’ll go away. I have bigger things to worry about. Like random bruising for no good reason. And blood appearing in places it should never be.

So I showed Dr. Bill my list of things that I needed to talk to him about, and he went and got his reading glasses so he could read them. We talked about them a bit, and he went ahead and had blood drawn to do a CBC. He advised me to go ahead and see a specialist that I had tentatively made an appointment with already. He said that that could also provide useful information. So we shall see. But he agrees with Ken that it’s probably not the meds that is causing this.

In the grand scheme of things, what’s losing one’s voice? At least temporarily?

only a chronic illness sufferer,
Abigail

That time I gave him a ride

Note: I think I’m catching a cold; downside of working a job is that you come into contact with lots of germs. So I’m fleshing out unfinished posts for a change. This one should have come out last month.


In the course of spending a lot of time with Grace and at the church, I wound up giving a ride to a man that was living on the church grounds (literally.) During the course of the five minute ride, he told me his life story. This is what he said:

Yeah, I’m not actually from this area. I came up here a while ago to get medical treatment at the big hospital. I have cancer, like really bad. I was doing chemo for a long time, but now they said that it can’t be treated any more. So I’m just waiting for a few more days for my last doctor’s appointment at the clinic and then my brother is picking me up and I’m going home.

I made some comment about the fact that his doctor’s appointment was at 9 am. And he said quite simply, “That’s not early. When I was doing chemo, I had to be at the clinic at 6:30am and then had treatment from 7-7. That’s early.”

And I was humbled. I realized that here was a man who had been through much more than I had. (After all, he was much older than me. Just because I have an illness and have been through a lot doesn’t make me older and wiser than everyone!!) He was being sent home to die because the doctors “couldn’t help him any longer.” In the mean time, he was living outside in the (literally) freezing weather.

I was happy that taking one minute out of my day made a difference in this man’s life. Mostly, I was grateful that he took the time to share his story with me.

Abigail

Enjoying the Holidays?

Dear Readers,

I hope that you are enjoying the spirit of the holidays and all the festivities that go with them. Or at least that you aren’t buried under too big a mountain of self-pity.

Alas, I have been negligent with regard to this blog. However, I am happy to report two things:
1) I am planning on visiting a medical clinic early next year for a round of diagnostic consultations. Hopefully that will clarify some things regarding my long-term care.
2) I have been working a lot, which means that I now have money for room and board and whatever else I need when I’m at the clinic. I think it’s also time for new glasses since the finish on the ones I have has started shriveling up. (Plus they’re 3.5 years old.) It’s nice not to be spending savings for once.

Besides that, I’m on a different muscle relaxant now. I’m bruising much more easily, which makes me very nervous to wear anything other than long sleeves and long pants.

I’ve made it through almost the whole month of December with only 7 doctors/medical practitioners visits, including three sessions of psychotherapy. That’s actually a slow month for me. I did have quite a few sessions with Ken the pharmacist talking about the bruising and what to do about it. I need to go back and see my primary care doctor about it, but I’ve been lazy/busy with other things and it doesn’t seem life-threatening. (It’s weird when you start weighing your health like that.)

I saw an ex-best friend at work the other day. I got dumped by three people in college, three years in a row. It was pretty awful, but fortunately it only lasted for three years. Anyhow, I was pretty mad to see the ex-best friend after all that had happened. But, you know, he’s really the one who pushed me to get psychological help and was there for me when I first started taking anti-depressants. I know that I wouldn’t be where I am today without him. He forced me to believe in myself in a way that no one else had before. And I’m grateful. I’ve always wondered how I might be able to tell him that. So after he left and I was done being mad about the whole encounter, I realized that that might have been sufficient for him to know that I was doing okay and that I was doing better (at least from that perspective.) And that made the whole thing okay. Or at least okay-ish.

That’s all the news for now. Or at least, all that I can think of.

Peace until next time,
Abigail