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.
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.
Merry Christmas readers!! This month, I asked my fellow spoonies what their thoughts were on the holiday season. If they could ask for anything (without being worried about offending someone), here’s what they came up with:
Leslie at Getting Closer to Myself came up with a Christmas wish list of items that she’d love for Christmas. Like my own virtual shopping lists, these include both things that she’s admiring and things that help her as a chronically ill woman, reminding us that while someone is ill, that isn’t their entire identity, so not all their holiday wishes are illness-related!!
Rachel at Fluted Cups and Ampersands reminds us that just because thinking about illness makes you uncomfortable or feel guilty or anything else, it’s okay to talk about it. Part of coping with illness is helping other people around us cope with it. We need people to lean on, and we also understand that you are not superwoman. (That’s part of the miracle of illness; we learn our own mortality but we also become sympathetic with others’ mortality.) Let us help you; allow us to make this a two-way street where you give but you also receive.
Duncan of Duncan Cross points out that holidays can be stressful for those with chronic illnesses. Just because we recognize our mortality doesn’t make us immune to the stress of the holidays. Duncan says that holidays (1) destroy routine, (2) require (physical & emotional) work, and (3) are in the winter. All of these are especially taxing on the ill. So please cut us a little slack. (And Duncan: I didn’t beg; I inspired.)
Elizabeth of The Girl with Arthritis gives a tutorial on how to hug someone with a chronic illness, particularly one with inflammatory arthritis. If we somehow summoned the strength to make it to a holiday event or even to crash on your couch, we’d prefer that your gratitude not make our condition worse. Learn from Rachel on how to safely hug someone who’s physically hurting. And think about waving or shaking forearms (instead of hands) to reduce the amount of germ-spreading. We’d be eternally grateful.
Ms. Rainbow of RARainbow quotes the Dalai Lama saying: “Our prime purpose in life is to help others. If you can’t help them, then at least don’t hurt them.” Instead of bullying someone whose life is different than yours, learn more about their situation or just smile. Even the smallest act of kindness can mean the world. (Ms. Rainbow, great quote by the Dalai Lama; I’ll have to file that away with my memory of meeting him!!)
Rihann Louise of My Brain Lesion and Menotes that “Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.” It’s so true. I’ve started writing holiday cards to the people who have been the most supportive. Just writing a note saying why they’re so valuable to me as friends has been profoundly therapeutic to me and also fits right into the spirit of the holiday. Because really that’s what we need the most: your support. (At least that’s my holiday wish.)
That’s all, folks, for this month’s round of Patients for a Moment. Look for some new and exciting things happening in the new year. Among them, Duncan Cross, founder of PFAM, is starting an online book club for patients. Every three months, the book club will read, review, and discuss a book about illness and disability. If you would like to participate, or suggest a book, get in touch with Duncan at firstname.lastname@example.org. (Note that both I and Leslie already have book lists, so if you’re looking for some “light” holiday reading, here are some suggestions.)
I have a penchant for taking personality tests. Partly because I’m just curious & I like having external validation. Partly because I’ve noticed that this journey of having a chronic illness has had a significant impact on my personality. I’ve definitely mellowed a lot, but other subtle things have changed as well.
Sensitive Doers are gentle, modest and reserved persons. They cope well with everyday life and like their privacy. With their quiet, optimistic nature, they are also good, sought-after listeners and other people feel well in their company.
All in all, this type is the most likeable and friendliest of all personality types. Tolerance and their regard for others distinguish their personality. They are very caring, generous and always willing to help. They are open to and interested in everything that is new or unknown to them. However, if their inner value system or their sense of justice is hurt, Sensitive Doers can suddenly and surprisingly become forceful and assertive.
While I’m not convinced that I’m either a gifted artist or a very good craftsman, it is true that I tend to avoid conflict & politics, preferring team work that capitalizes on people’s strengths. I may be terrified of live animals, but I am good with small children (when it doesn’t interfere with illness!)
I know that I’m woefully behind in posting this month’s PFAM blog roundup and just updates in general, but I have an honest-to-goodness excuse.
I interviewed for, got offered, trained, and started a cashiering job all in the past week.
I’ve already worked four days, and they have me on the schedule working 40 hour weeks. Since I already have two part-time jobs that want me to work more hours than usual, this has been kind of ridiculous. Mostly I go to work and then I go home & figure out what I need for work the next day and then I go to sleep. But it should be less crazy next week once midterms are over and no one wants to hire a tutor!!
Other exciting news is that I signed up for my first virtual quilting bee!!! I had forgotten that I had applied for that, but it should be exciting. I’m looking forward to it (and hoping that I find the time & energy to come up with an idea for my month, which is February!!)
In America, we have this game we call “Twister“. I’ve played it once I think. It involves colors and placing your hands and feet on the appropriately colored spot when signaled to. Usually someone winds up attempting some impossible position and falls down. The goal is to be the last man standing.
Well, lucky for me, I don’t have to get out a board whenever I feel like playing Twister. In fact, I don’t even have to feel like playing it. My life is one giant Twister game. Or so it seems. Allow me to clarify.
One time I was visiting Tabitha and exploring her town on my own. I met up with one of my college friends, and he and I decided to tour the sites. Somehow, we managed to go in and out of a lot of buildings which had stairs but no railings. I kept reaching out for his shoulder to use as support every time we went down the stairs. He knew about all my health issues (being my classmate and all), but finally I just blurted out, I fall so easily. I’d rather not risk falling while I’m on vacation because it takes SO long to heal. He said that it wasn’t a problem and that he was glad I had told him so that he could be sure that I didn’t fall while we were out. Fast forward about three months and I was emailing him to tell him that I hadn’t been paranoid and that I had actually fallen and twisted my ankle walking in my own house. I think it took about six months to recover from that. And that was three years ago!
Well, unfortunately, my life continues to enjoy the game of Twister (it seems.) Over the weekend, I was playing with a little girl and somehow my knee started killing me. Come to find out that I had tried to use my knee as a ball and socket joint instead of a hinge joint and wound up twisting the tissue all in there. I’m sure the chiropractor thought I had done something super amazing but I’m fairly certain that all I did was stand up from the couch.
The problem with having a connective tissue disorder, especially one with a collagen deficiency, is that your muscles just don’t bounce back the way that they’re supposed to. One could get used to it except that the failure isn’t consistent. Most of the time it’s somewhat wrong, but occasionally it’s really, really wrong. And you don’t have any control over when that happens. Suddenly you go from just walking to scrambling to find your balance and not trip over ten other things on your way to the ground. Add a muscle relaxant in and you’re asking for trouble.
I’m forever grateful that my parents signed me up for gymnastics back in the day. I can’t stand being upside down (which is about half of gymnastics), so I never got very far, but I did learn a very valuable skill that I use all the time: how to fall without hurting yourself. We practiced “falling” off a balance beam and landing in a neat tuck position. We practiced swinging off the bars and landing on our feet. We ran up to the vault, jumped on it, and then practiced jumping off of it and landing in the perfect position. And it turns out, if your life is a constant game of Twister, knowing how to land is very important.
Hypermobility == a lifetime of playing Twister, with yourself, for no points whatsoever. Since I have no desire to be an eternal couch potato, I’ve resigned myself to being careful and sometimes just being in the healing era. Oh, and owning up to the problem occasionally, especially if it’ll help prevent injury.
Scene: 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.
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.]
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!”]
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.
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.
The highlight of my day was at my doctor’s appointment. I found that my doctor is not only a twin (fraternal, not identical) but that when he was young, he and his siblings had a pet duck named Penelope. (Not a furry, cuddly one, but a real live one.) Apparently, she was pretty cuddly though because she was in the sibling photo.
It might be a sign that I’ve spent too much time in doctor’s offices or that dealing with the mundanity of having a chronic illness is finally getting to me. Or I’ve just truly come to terms with the fact that doctors are human.
Anyhow, I have a new family doctor and his duck was named Penelope.
Someone is paying me to make 5 dozen holiday cookies for them. Now they’re not paying me very much, and it’s not a full-time job or anything, but it’s a big deal for this spoonie. Why?
Because someone is paying me to get out of bed. That’s big. And, this gluten-free, dairy-free girl can just follow a recipe for once & actually just make something the way Martha Stewart intended. And I can experiment and do something wacky & sophisticated just because.
At this point, that’s a gift. And I’ll take it. I’ll take any gift someone is willing to give me. Especially if they’re willing to pay me for it. Even if it is a perfect stranger.
Calling all chronic patients, spoonies, caregivers, medical professionals, and human beings!!! I’m hosting this month’s Patients for Moment carnival, and I want YOU to participate!!!
Each month, Patients for Moments hosts a blog carnival where we ask each participant to write a short blog post (or even a comment to someone else’s blog post), contributing their thoughts on a given topic. The more thoughts (and perspectives) the better, so come on in and join the party. Loyal participants, novice writer, or long-time silent reader: you are welcome.
In the spirit of reflection and gearing up for the holidays, this month’s topic is your holiday message. What is it that you would tell your Aunt Sally when she says, I really wish there was something I could do to make your life better? Is there something you wish you could say to that friend who says Call me if you need anything?
If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what is that you would ask for or want people to know? Do you have a message of encouragement for our community? A request for support or encouragement or even basic understanding?
To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by December 12. Please include PFAM in your subject line. OR if you don’t have a blog, feel free to comment directly on this post.
The final edition will be showcased here on December 15.