Wednesday, September 30, 2009
I was seeing an orthopedic surgeon for an analysis of my scoliosis; just to see how if it had progressed since diagnosis, how it's effecting me, and whether I should be doing anything more proactive about it.
I'd never met this doctor before, but he was great. Friendly and funny (I really appreciate a sense of humour at the hospital. I know not everyone does, and so not all doctors joke around, but I like it when they do). We chatted about my rheumatologist, who he also knows, and her enormous family; about my job; about my arthritis and my HCM. He took a very thorough look at my back and at all my X-Rays. Since it was my first time seeing my ICD in an x-ray, we looked at that together for a few minutes - it was very cool to see it.
His conclusion was that my actual scoliosis curve is not very bad at all. My ribs have rotated more than he would have expected, which accounts for my pain and is likely also connected to some of my cardiac issues. But, no invasive procedures necessary!
This is the prescription I left with:
1) Start doing core exercises to strengthen my back. (Sigh. They're so boring.)
2) Keep my weight right where it is.
3) Get a shoe lift to make up my leg-length discrepancy.
It felt great to leave his office knowing I don't need to go back to him, nor do I need to be referred to anyone else, and nor do I need to undergo another pile of tests. Sometimes I leave the doctor's office feeling like I've had everything that's "wrong" with me thrown in my face. This time, I felt healthy and confident.
Before I left, he looked me in the face and asked me how I felt about my back. Not how it feels, not whether it's painful, but how I feel about the way I look. I was honest and told him I tend to be hyper-aware of it. I'm self-conscious about it and think I look hunched-over when I see myself in photos. He looked me up and down, carefully, and told me he disagreed. He said that when he first saw me, he didn't notice anything wrong, and that no one who didn't know about my scoliosis would see anything wrong. The conversation meant a lot to me, and I'm grateful that he picked up on my self-consciousness and decided to talk to me about it.
Then I came home and made a delicious Nigella Lawson dinner for a friend. Oh, and I also bought new shoes to fit the lift I'm going to get. Any excuse for shoes is good enough for me.
Friday, September 25, 2009
Shingles happen when the chicken pox virus, which, after you've had it, lies dormant in certain nerves, decides to wake up and greet the day in the form of a painful, blistery rash. Ouch. I had shingles when I was 19, presumably brought on by a combination of my immune system, which enjoys a good laugh now and then, and stress. It was a relatively mild case that disappeared after a few weeks, leaving just a little cluster of scars at the base of my sternum. But it was uncomfortable enough for me to know I would prefer not to experience a severe case (although it seems I have to wait a while before I'm eligible to be vaccinated).
The vaccine has been sold in the U.S. since 2006.
Thursday, September 24, 2009
And... oh, crap. There's me, facing away from the camera with my bum shoved out. Like a hooker, but not. A hooker would be far too modest even to attempt to emulate the attitude I have adopted in said photo. Maybe a cartoon hooker would do it.
It's my scoliosis, you see. My right shoulder bends forward, my ribcage thrusts out along my right side and squeezes in on the left, and, most unfortunately, my hip sort of swings to the left and takes my rear end with it. To be fair to myself, I was in some pain that day; standing around for hours is pretty much guaranteed to bother my back and exaggerate the already visible outward manifestations of scoliosis.
I have to say, though, I was not particularly pleased when I saw this. There are ten people copied on this email; ten people I envisioned squinting suspiciously at it and wondering who brought the escort.
My posture is the aspect of my physical appearance about which I am most self-conscious. It attempts to sabotage my love of choral singing and community theatre by telling me everyone will stare at the girl who doesn't stand up straight. Occasionally it injects itself into the moments when I feel good in a new outfit by reminding me I still look lopsided. It seems bent on weakening my resolve when I speak in front of an audience.
For the most part, I think I do a pretty good job of refusing to listen, but pictures like this sometimes startle me. And I don't really see myself getting to a point at which I am totally ok with the visibility of my scoliosis. But I think I am ok with that; with not being ok with it, if that makes any sense. It does to me.
Profound, huh? I know.
Tuesday, September 22, 2009
Before I got my ICD, I wore a 48-hour holter. It stopped working about 5 times, and each time I had to go back to the hospital and get it hooked up again. (We finally realized it wasn't me, it was the machine itself, so we switched it for another.) When I finally got to take it off, the tape was so stuck to me that I bled and had little scabs all over my chest.
This little patch looks like a simple, discreet solution.
Monday, September 21, 2009
I think many of us can relate to the frustration of constantly arranging our schedules to fit our medical appointments. I've always had three or four appointments with a rheumatologist every year, but while being diagnosed with HCM and super high blood pressure in early 2007, that number shot upwards at a rate that made my head spin. I also had ovarian cysts (one of which later ruptured) and kidney stones, which also required lots of appointments. I was in my first year of grad school and spending two or three days a week at Toronto's various hospitals - for a while, I spent more time in hospitals than I did on campus. And, since I was new to the city and a three-hour drive away from family, I went to all of the appointments alone. I think what made it all do-able was the simple fact that I was so busy I just had to keep my head down and get through it.
A few months ago, a potential date (which never turned into anything) announced to me that he hadn't been to the doctor in 5 years. I had no idea what to say to that. "Oh, I go all the time!" would have required some kind of explanation, which I really didn't feel like giving. I think I just kind of made a noise at him. (I am so smooth.)
I kept the date-book I had while I lived in Toronto, and I've opened it up once or twice to remind myself what that time was like. Since May (which is when I bought my current date-book), I've had 5 appointments, have another coming up next week, and should find out soon when they want to repeat my procainamide challenge. Too bad they don't make house-calls.
Friday, September 18, 2009
I always feel a bit odd when my medical procedure is performed by someone my own age. I realize that this is probably the norm for most of the adult population; when you're forty-two, it's unlikely you're going to have a ninety-year-old start your IV or shove a bedpan under you. But it's still something of a novelty for me when the person doing the prodding is someone I might, in any other situation, have been friends with.
The X-ray technician this morning looked about my age. As I wrangled with the bed-sheet-sized gown and arranged myself into the various requisite contortions, she more or less had a feel. At least, it would have been a feel, had we been anywhere else. Since I was lying on an X-ray table and she was wearing an ID badge, we'll say, instead, that she was examining my back in order to get the best picture of my curvature. It crossed my mind that, had we met in a book club or a class or any other non-medical situation, she would never have presumed to arrange my pelvis for me.
She was friendly and the process was easy, except for the fact that I was wishing I was still in bed (I'd shown up at 7:30 so I could get to work on time). But it might not always be so stress-free. Ever since a less-than-impressive date with a medical resident (all he talked about was surgery!), I've had a horror of actually running into him at the hospital (no, that's not where I met him).
Now that I'm so much closer in age to nurses, residents, even some of my doctors, the potential for social awkwardness (something to which I've always been highly attuned) has increased exponentially. I would, for instance, have no idea what to do if I ran into someone at a bar who had previously had an eyefull of boob during a cardiac exam. And living in a university town, with a fairly heavily populated med school, the possibility is not entirely remote.
I guess, if it does happen, it will make for mildly amusing blog fodder.
Thursday, September 17, 2009
Wednesday, September 16, 2009
...I said no. They're welcome to film me anywhere else, but I'm not ready to be that open about my health issues at work. She was very understanding, and we're going to find a way to film me elsewhere, but I'm wondering - would most other RA patients have said yes? Should I have said yes? I've always been a private person, and the idea of talking about my arthritis with my colleagues sitting close by makes me cringe.
Besides, I'm a writer, and aside from the pain that can develop when I'm sitting at a desk all day, I generally do just fine at work. Apparently this person wants to film me going about my daily routine, but honestly, that would be pretty boring. After 24 years with RA, I've adapted to be able to do things in a way that I think looks pretty ordinary. Once, at work, I did have to go and throw up because my hip and back hurt so much (I get nauseous when I'm in a lot of pain - lovely). But when my back and my joints hurt, I usually just end up curled up on the couch, in bed, or in the bath. And after a while, the pain subsides to its usual dull, omnipresent throbbing. Boring.
For me, that's a good thing. For television, not so much. I'll let you know what kind of compromise we reach.
Tuesday, September 15, 2009
In part, I enjoyed it because my teacher was lovely, he has a funny, friendly wife, a sweet three-year-old girl, a gentle greyhound (I could not get enough of that dog), and a quirky old house, and he made me a fantastic cup of tea. He also said that when it gets colder, he adds Bailey's to the tea. No problems there.
But I left the lesson feeling good not just about my instructor, but about myself.
I hadn't expected singing to be such a physical exercise. I have major work to do to learn to breathe diaphragmatically. I told him right away that I have scoliosis, because the first thing he wanted to talk about was posture. He said I'm definitely not his first student with scoliosis, which was great to hear. The breathing exercises felt like a lot of work, and by the end of the lesson, I was a bit out of breath and also starting to feel twinges of pleuritic pain (which I still feel occasionally, even though my bout of pleurisy happened a year ago). I tend to breathe quite shallowly, which is perhaps due to the way my ribs have rotated with my scoliosis - there's just not a whole lot of room in there for my lungs to expand. I'm expecting this to help a great deal.
I didn't actually sing anything; I just did scales and spent a lot of time talking to my instructor, P., about what I can learn with him. But it felt amazing to have the possibility before me of being good at something so physical. This is all about my body; the strength of my lungs, the flexibility and relaxation of jaw and facial muscles, the ability to project my voice. All things I think I am up for - with effort.
Monday, September 14, 2009
It'll be an hour long, and my instructor has stage and choral experience, both of which I have been doing more of lately - on a very amateur level - and really enjoying. Although, that said, I have next to zero solo singing experience (at least in public) and might be a really, really dreadful singer. I hope he'll tell me if I am!
One of the reasons I am so looking forward to this is that it is, in some sense, a way of making up for the things I didn't get to do as a kid. Before my arthritis worsened around age 11, I did all sorts of things: piano, horseback riding, skating, even gymnastics. As my RA became increasingly severe, I stopped all of them on doctors' orders, and after that I always kind of felt like the kid who didn't have a "thing". Other than writing, about which I was very private, there was no talent or hobby through which I could define myself. I was awfully jealous of the hockey players, violinists, figure skaters, and guitarists I knew.
I still can't go out and get involved in a sport, and with my wrists and fingers, most instruments remain a no-go. But there's no reason I can't exercise my vocal chords. Who knows - maybe by this time next week I'll be warbling the soprano aria from The Magic Flute. Watch for me on PBS.
Thursday, September 10, 2009
(As you can see, I am still a grouch after yesterday.)
I have so many doctors it's a little overwhelming sometimes. I'm seeing a spine surgeon in a few weeks, and I hope to discuss the possibility that my scoliosis might be responsible for some of my cardiac symptoms; both my rheumatologist and one of my cardiologists have suggested this could be happening. But I feel overwhelmed at the very thought of bringing this up and setting in motion another inefficient chain of emails, faxes, and voicemail messages. Meanwhile, the doc I saw yesterday will be phoning, writing, and presumably sending passenger pigeons to the doctors I saw while I lived in Toronto.
It's not my doctors; in almost every instance, they have been wonderful. I value them and am grateful for them. But sometimes I feel like it falls to me to help everybody keep track of everybody else, and that is a lot of work.
Wednesday, September 9, 2009
But I left feeling rotten.
Here's why: He suggested that, if I had originally been seen at his hospital, rather than in Toronto, I might not have been encouraged to get my defibrillator. He admitted that my Toronto doctors are experts in the field of congenital arrhythmias, but he said they tended to err on the side of caution, whereas he tends to be more restrained in his approach to treatment. He did 3 types of EKGs and did tell me that they were abnormal (electrical impulses coming from an unusual direction, or... something? There was a lot to take in; I'll make sure I learn more the next time I see him), but he didn't want to connect that abnormality to Brugada. It could be a result of HCM, or something else (and now I wonder if it's related to scoliosis, and I didn't think to ask that at the time - I hate thinking of the important questions once I'm already out the door.)
He encouraged me to repeat the original test which produced the positive result - a Procainamide challenge - and I have agreed to do so. It will be done as an IV infusion with an EKG hooked up.
I had a fairly long talk with him, and told him I feel a bit frustrated with the lack of positive knowledge.
I didn't tell him, I guess because I hadn't fully thought it out, that what's really bothering me is the idea that all of the tests, procedures, the surgery, the getting-used-to-it that I've gone through over the past two years, might have been pointless.
My Dad reminded me that I was seen by some of the top North American experts when I went to Toronto, and that they weren't in the room with us to defend their decisions. This new doc is going to talk with them about me, hopefully soon. And my uncle did die.
I keep reminding myself of my original electrophysiologist - well-known in his field, an award-winning professor of medicine and no idiot, I am sure - phoning me at home the day after my surgery to make sure I was doing well, and telling me he thought I had made the right decision. But I'm still a bit glum.
Friday, September 4, 2009
1. The illness I live with is: Rheumatoid Arthritis, Scoliosis and Hypertrophic Cardiomyopathy
2. I was diagnosed with it in the year: RA - 1985, Scoliosis - 1994, HCM - 2007
3. But I had symptoms since: Always!
4. The biggest adjustment I’ve had to make is: Arthritis requires constant, small adjustments, but, because I was only two years old when I was diagnosed, I never had to make that mental leap from "healthy" to "sick". Although my HCM diagnosis came much later, I think the fact that I already had a chronic illness has helped me start to accept it. I'm still adjusting to the way my implanted defibrillator feels, though, and to the fact that I'm always going to have one.
5. Most people assume: That arthritis is a disease of the elderly.
6. The hardest parts about mornings are: Getting my stiffness and occasionally my shortness of breath under control.
7. My favorite medical TV show is: House - mostly because Hugh Laurie is dishy. And I love Doc Martin, from the UK; it's a great comedy/drama about a small town GP with a fear of blood.
8. A gadget I couldn’t live without is: My electric can opener; without it, no cans would ever be opened at my house.
9. The hardest part about nights are: Getting comfortable enough to sleep.
10. Each day I take __ pills & vitamins. (No comments, please): 7 on a regular day including vitamins and supplements, and 13 on Thursdays, plus 1 injection per week.
11. Regarding alternative treatments I: am all for living the healthiest life I possibly can, with whatever tools are at my disposal. I respect the choices of those who opt to go the alternative route, but we each need to choose what works best for us, on our own terms. Drugs work for some and not for others. For me, the best treatment includes conventional medication, together with a healthy diet and lots of exercise and relaxation.
12. If I had to choose between an invisible illness or visible I would choose: To stay just the way I am.
13. Regarding working and career: I work full-time and am planning to go back to school. Eventually I want to work from home, so I can arrange my own schedule to fit the way I'm feeling.
14. People would be surprised to know: That I have arthritis, scoliosis and HCM. People don't usually figure it out unless I tell them.
15. The hardest thing to accept about my new reality has been: Arthritis has always been my reality, although I have found my cardiac diagnosis more difficult to accept. If my uncle J was still alive, I might never have been diagnosed, and sometimes it's hard to know what to feel about that.
16. Something I never thought I could do with my illness that I did was: Backpack through Europe, and have a wonderful time - just a few months after my ICD implant. I was even more energetic than my healthy travel companion.
17. The commercials about my illness: I rarely see any, but when I do, I find they sometimes feed into popular generalizations that arthritis means nothing more than achy joints.
18. Something I really miss doing since I was diagnosed is: I haven't done a cartwheel in 15 years, since my wrists fused when I was about 10.
19. It was really hard to have to give up: I had to give up most of my hobbies as a kid - horseback riding, gymnastics, and piano, because my joints were too painful and puffy to do anything.
20. A new hobby I have taken up since my diagnosis is: Blogging, apparently.
21. If I could have one day of feeling normal again I would: Probably nothing very different than what I do now - feeling "normal" would be brand new to me!
22. My illness has taught me: That you never know what's around the corner, but you can always handle it better than you could have imagined.
23. Want to know a secret? One thing people say that gets under my skin is: "You should just try _____; it cured my friend's cousin's babysitter!"
24. But I love it when people: Discreetly offer to help me with things.
25. My favorite motto, scripture, quote that gets me through tough times is: I can't pick any one specific quote -- I'm always reading and always drawing inspiration from what I read.
26. When someone is diagnosed I’d like to tell them: Things will get better than they seem now.
27. Something that has surprised me about living with an illness is: I don't remember not living with an illness, but I am continually surprised by the small kindnesses of strangers, friends, family and health care workers, and I am often just as surprised at my own ability to handle each new challenge. When I was younger, I could never, ever have imagined I'd receive a defibrillator at 24. But I did, and I got through it, and I'm ready for my next challenge.
28. The nicest thing someone did for me when I wasn’t feeling well was: My parents took wonderful care of me after my ICD implant, and my Mom sat up with me in the middle of the night when I had terrible pain from pleurisy.
29. I’m involved with Invisible Illness Week because: Invisible illnesses are everywhere, and it's important that we recognize the effects they have on people's lives.
30. The fact that you read this list makes me feel: Well, I hope you read it!
Yesterday, Rheumatoid Arthritis Guy posted a link to a wonderful children's book entitled Taking Arthritis to School, and I spent some time thinking about my own childhood with JRA.
My life with arthritis began when I was 2 years old, and I have no memory of what it was like not to have this disease. I do have lots of memories of what it's like to grow up with it, though, and when I meet parents of kids with arthritis - usually at Arthritis Society events - I sometimes get asked if I have any advice for bringing up young children with JRA. Here's what I think all parents should know:
As scared as you might be, it's important to approach your child's illness with confidence - not only in doctors and treatments, but in your child himself. Let him know that you believe he is strong enough to live with JRA.
2. If your child is at school, make sure everyone involved in your child's education is aware of, and understands, his or her illness. Teachers, principals, assistants, everyone. This is important not only to your child's safety at school, but also to his or her self-image. Your child's teacher must understand that there may be certain things he is unable to do, and should not be asked to do. I used to absolutely dread being asked by a teacher to open a classroom window; I always tried and failed, in front of the entire class. It sounds minor, but I found it humiliating - and it happened more than once.
I had some wonderful teachers who knew exactly what was going on, but there were others who, though they had been told, just didn't get it. Do your best to make sure your child's school is as safe - from both physical and emotional harm - as it can be.
3. Make sure your child's classmates are also aware of his or her condition. To put it bluntly, kids can be mean, and it's not unlikely that your child will experience some teasing, or even bullying, at some point in his life. I did. But if you can educate your child's friends and classmates about JRA, you can create an environment in which your child is more likely to be accepted and understood. And if your child is teased, kids who know the truth about his illness might just be more likely to come to his aid.
I used to insist on running about in the schoolyard at recess with all the others kids, playing baseball, soccer or whatever happened on be on the go that day. I sucked, big time. I think I've mentioned here before that as I ran I often heard taunts of "Arthritis!" in the background. But there was one boy who always shouted louder than the rest, whose cries of "Good try, Helen! You can do it!" always rose about the taunts. I will never forget him as long as I live.
4. Let your child be independent. This is related to my first point, but I think it's particularly important. Camp, birthday parties, sleepovers, class trips? Certainly, make sure your child will be safe, but if she wants to go, encourage her. It is also often possible to modify certain activities so that your child will be able to have fun with her friends without hurting herself. I had a great time on a horseback-riding class trip, even though my inflamed wrists prevented me from actually riding any horses. My teacher made sure I had a full, fun weekend grooming a very sweet-tempered pony, walking trails and doing crafts, and I enjoyed it all thoroughly.
Bottom line: Your child will be in pain. Your child may have physical limitations. But your child still can, and should, experience and enjoy life for herself. There is still much fun to be had.
5. I know not everyone will agree with this one, but it's probably the most important point I'm going to make. Treat your child's rheumatoid arthritis agressively, from the outset. There are treatments that can minimize and prevent permanent joint damage if administered early on.
I have quite a lot of permanent joint damage. Wrists that don't move, fingers that can't make a fist, knees that don't straighten or bend as far as they should. But as time goes on, I'm hearing less and less about permanent joint damage in children and teens, and in people diagnosed with RA in adulthood. Thanks to drugs like methotrexate, the new biologic response modifiers, and others, joint damage can often be slowed or even prevented altogether. In my case, all of my permanent damage occurred before I started taking methotrexate in the eighth grade.
You might hate the idea of your child having to take medications, and I've had quite a few people ask me what I think about treatment approaches based solely on alternative methods. Quite honestly, and with respect to the many people who incorporate alternative treatments into their own approaches, I think this is a bad idea. If you want to supplement your child's treatment plan with alternative medicines - that your child's rheumatologist has APPROVED, because "natural" treatments can still interact with other medications and can still cause adverse reactions, even on their own - go ahead. But please, please don't ignore the incredible advances that are being made in the treatment of JRA. Your child deserves your awareness and your action.
The last thing I will say is that JRA is not the dire sentence it will at first appear to be. Full lives can be lived and wonderful things accomplished by people with JRA and RA. The most important thing you can do for your child is believe that.
Wednesday, September 2, 2009
There is nothing quite like the knowledge that there is a little metal box inside you with the power to deliver a 35 J shock, and you have absolutely zero control over it.
I like being in control. I feel best when I do things for myself; I like knowing all there is to know about what I'm doing and what's being done to me. So during medical procedures, I like to see what's going on -- I watch the needle disappearing into flesh, the incision being made (if I happen to be awake). It's not that I think anybody's going to do anything wrong; I simply like to be aware of what's happening to me.
That's the shitty thing about illness, though. I can be as eagle-eyed as I like when I'm at the hospital, but I have no idea what my body is going to feel like next year, next month or next week; whether I'll lose more range of motion in my knees, when I'll need that beta blocker my cardiologist talks about, whether the spine surgeon I'm seeing will be able to do anything to help my scoliosis. Even when we're treating our illnesses aggressively, we are still forced to relinquish some of our control over our bodies. I know that to some extent, this is true of everyone, but illness taunts us with the knowledge, and the experience, of what we might be. There are innumerable sufferings about which I know nothing, but I do know what it's like to be unable to cut my own food or button my own shirt. And, all things considered, I'm happy to leave those experiences in the past.
I suppose the comfort is that we humans somehow continue to put one foot in front of the other no matter what we're facing. So if my ICD had decided that last night was the night to initiate me into the ranks of the defibrillated, well, I would have handled it, as so many others have, and do. If, in three years, my arthritis medications aren't doing the trick and I'm reliant on others to get me through the day, then I'll handle that, too. My beat-up body is pretty good at that.
Tuesday, September 1, 2009
Eventually, my doctors showed up and got to work (but not before showing off their catch). It was quite pleasant, lying there on the table with the sun beating down and the Hawaiian-shirted doctors hovering above me, voices buzzing quietly like drowsy summer bees.
The only explanation I can come up with is that I'll be seeing a new cardiologist next week, and I ate some mahi mahi last night.