Chronic Illness Support

Did you read about the Medtronic defibrillator lead recall? Guess who has a Fidelis lead implanted in her heart?

Oh yeah, baby.

Luckily, I have an appointment with my cardiologist next week. There's not much that can be done, really. There's a 2.5% chance the lead might fracture--setting off inappropriate shocks or no shock if I need it--but as one of my online support group members said, if we didn't have the ICD, there would be 100% chance we'd die if our hearts stopped.

Apparently there's some jiggery-pokery that they can do with programming to mitigate potential problems. Replacing the lead is not recommended, and I'm not really thrilled at that idea anyway. My heart was jumpy and irritated for a year after implantation and the last thing I want is to go through the cath lab and implantation and healing all over again. It is hell.

I am a very light sleeper. Very light. The last three nights, right around 1 am, an alarm has gone off in our bedroom. It was a high-low tone, like a European police siren, but soft. There was only one thing that I knew of in my room that would produce a sound like that:

My ICD/pacemaker.

It was supposed to alert, if it needed to, at 10:10 am. But the way my medical care has gone, WHO KNOWS. Oh, I ransacked the room to make sure. The first thing I checked was my iPod, which coincidentally I'd brought up stairs three nights ago from its usual spot by my chair. I couldn't find an alarm clock on it.

So finally after I heard the tone again last night/this morning, I tried to find a sample sound at Medtronic (the ICD maker), but only found a note saying if you heard that sound to call your doctor IMMEDIATELY. So I did, and they said to call in when the clinic opened to have my unit tested.

I freaked out about what could have caused my unit to malfunction. The thought of going back into that hospital and having them screw around with my implant--it was more than I could bear. It's just too soon. I remember it all too well.

Finally John said, look, search on iPod alarm and see what you can find out. I just don't think it's your ICD. I found a tutorial on using your iPod alarm clock. Yes, it has one. Went through the steps. Found it, and discovered that the damn thing had somehow been programmed to give a soft, European police siren-y sound at, you guessed it, 1 am. I burst into tears of relief, and turned off the alarm.

I have successfully resisted the urge so far to throw the goddamned thing out the window.

I've figured out what the heck's the matter with me these days.

I've been depressed and exhausted. I'm exercising 30 minutes a day but haven't dropped a pound contrary to past experience. My skin and eyes are very dry. My hair is thinning. I'm menopausal (germane only in terms of timing). And I'm cold all the time.

Hello! My thyroid is acting up again!

So now I have to find a doctor who'll listen to me. My main practitioner, Dr. Pete, is sympathetic but can only go by the approved tests (I'm seeing him next week anyway). My naturopath, Dr. Marty, has the right tests to show the problem and will help me, but isn't covered by insurance.

(Side rant: WHEN will insurance companies figure out that naturopathic is cheaper for them than allopathic and make naturopaths the first line of defense against illness? sheesh.)

Stay tuned, we'll figure this thing out. I feel better already just knowing what's probably going on; I was starting to lose hope there for a bit.

I just haven't wanted to write lately, I'm sorry. I feel cramped in the brain, cramped in the fingers, but not cramped where I should be cramped. I blame menopause. I'm in the "pause" part of it, if you know what I mean, and it makes me antsy. One gets used to a monthly rhythm, and when it breaks off, one starts eyeing the pg tests. One of which, in fact, I took, and no fears; I'm just having an extra-extra-extra long "pause."

Leaving cardiac rehab has thrown me for a loop. I no longer have that three-times-a-week external structure and I am notoriously, chronically bad at structuring my life myself. The first week after, I walked on the treadmill religiously. The second week, I was sporadic; I didn't feel well and I was just wanting to curl up in bed or in a chair and not do anything or go anywhere or move, really. Not because I physically felt bad, I just didn't wanna. But I have a treadmill, and we got a resistance band set and a set of hand weights. I'm outfitted but was having a hard time getting past some psychic inertia.

I haven't talked about it yet, but I've hired a professional organizer, someone who's good at working with chronically disorganized people with ADD/ADHD (all four of us) and who's worked with homeschoolers to boot. It's already helping, though it's tough sledding. I wrote her for help and she came up with the following solution:

Make my treadmill workout part of Josie's school time.

Josie brings whatever we're wanting to work on upstairs and sits on the edge of the bathtub while I walk. She reads aloud to me and we talk about what we're studying. At first it was Greek mythology; Jo is a fan of the Trojan War, as it happens. Today it was Egyptian and Sumerian history (from "Story of the World"). I'm able to help her with her pronunciation, of both weird proper nouns like Telemachus and Euphrates and more commonplace English words, and our discussions always end up ranging far afield of the topic, because it's me, and I can't help getting from A to B via Z and Josie takes after me, the poor thing. For instance, today's discussion of the Great Pyramid of Cheops and the Sphinx led to the Napoleonic Wars, since his men blew the nose off of it in cannon practice.

We've both come to look forward to this time; she enjoys the attention, the workout goes quickly for me, we are guaranteed at least some formal school time, and Jo is there if I have a problem--even though I don't think I will have a problem. I know not to exercise when I don't feel well, and my heart troubles don't just turn up out of the blue. Just so no one thinks I'm putting a big burden on poor Josie, she doesn't know I'm reassured having her there.

Last week I managed maybe one day on the treadmill; this week I did Monday, Thursday and Friday, and I know I'll be on it tomorrow as well. I only missed Tuesday because we spent the afternoon in the ER after a heavy mirror fell off the wall onto Josie's foot (contusions only), and Wednesday I was just pooped. So, on the whole, it works!

I've been struggling this week with two things, one of which I have control over and one of which I really don't: The server, and my heart.

The server, I think I've got it more or less in shape now. It was a hard struggle, and it kept me from blogging here much, but I've stopped things from constantly crashing and I think we're now in pretty good shape.

My heart? It's not so much that I've had heart trouble as I've had heart control trouble. I know that makes no sense. Bear with me. I've had a tough week--not enough sleep, PMS and stress over the server (the downtime has cost us a lot of ad $$). I've been having really bad PVCs lately, to the point of being in pain. I'm not entirely sure I can explain my thought processes on this, but the more I try to keep myself from having heart trouble the more discomfort and anxiety I experience. My long-suffering uncle the doctor finally told me a few days ago, "Lynner, if you're really going to get sick you can't stop it. There's nothing you can do about it."

Last night talking with my therapist it's as if I finally found the boundary between what I can control--basically, whether I'm hungry, angry, lonely, tired, cold or dehydrated--and what I can't control--whether my heart is really going to go into spasm. Weeks ago, working with her, I discovered that I had tightness in my chest from literally trying to "hold myself together"; I was tensing up in an attempt to physically keep myself from having a spasm or even showing discomfort, which of course was causing me great discomfort. So this isn't an entirely new discovery. It's just like layers of an onion, peeling away.

It makes me wonder about how much I can apply this to other areas of my life--I mean, you'd think I hadn't been in recovery for 20 years, for crying out loud. --read more

Since I often share my sorrows it's only fair I share my good times.

I got up, and I felt pretty good. I went to the rehab gym, had a good workout, and felt pretty good. Came home, did knitting circle, got tired, but still felt pretty good. Did therapy, came home, had a really tasty dinner (made by John), watched a little telly, did a little work here, and went to bed still feeling pretty good.

Yesterday I had a good day. Just a plain old good day. I cannot tell you the last time I had a good day. I'm almost afraid to jinx it. Perhaps--just perhaps--I'm turning a corner.--read more

This cardiac rehab thing is really getting me down. Yesterday was an absolute disaster. I think I did too much. I'll spare the details but suffice it to say that I felt so crappy after I finished working out yesterday that it took me two hours to get home, most of it waiting until I felt fit to drive, and I spent the rest of the day on the couch. I took a long nap, too, and today I feel like a wet rag--a very sore and tense wet rag. In short, I'm flaring.

John thinks I'm not exercising enough on my "down" days, but I thought you were supposed to be able to exercise three times a week and have it mean something. I'm progressing; I started out doing 20 minutes of aerobic activity, and now I'm doing 40 minutes, and that was in the span of 3 weeks. I'm wondering if I'm pushing myself too fast, but then there's always that nagging voice in the back of my head: "You're just a lazy no-good malingerer looking for attention." I'm going to talk with the gals at the clinic.

I don't know if it's menopause or the heart stuff, but I am so cold all the time these days. Sometimes it's just my hands, but lately it's been my core--my torso--to the point that I sorta pull in, round my shoulders, gather myself to myself. Then my chest starts to hurt and I think, "uh oh," but working with my counselor on Wednesday we realized I was just COLD and my chest hurt because I was all hunched in.

Right now I'm thanking my lucky stars for my huge kitchen window. It's a sunny day here, cool but sunny, and the light and warmth is just streaming into the kitchen. I've got my back to it, and I'm just soaking up the heat. I've even turned up my shirts to let my bare skin get the sun (no worries, nothing naughty exposed). aaahhh. At night I've been sitting in the TV room with my "Warm Up Lynn" blankie over my shoulders and another over my knees. And in the shower I am practically bathing in the hot water tank.

It's weird. Why am I so cold? I thought menopause was all about the hot flashes, and I've had a couple of those, but this constant chill...

Suffice it to say I've ramped up my knitting efforts. I'm surrounded by wool, so there's no excuse for me to be cold.

Going to the ER on Monday after my little "drum solos" was actually good for me. Nothing was wrong, yada yada. I got through without dying and without getting bulldozed. John and I repeated "NO BETA BLOCKERS" so much that finally a nurse said, "OK! We got it! No beta blockers!" I got my new MedicAlert bracelet listing "no beta blockers" today too, so I feel a lot better about my chances under unfamiliar care now. Plus also it's two tone gold and silver titanium! ooooh!

At therapy last night we talked about why I came back from the dead--why, if I was happy being dead, and I was, I came back, and how did I feel about that. "I imagine you feel meaningless," she said. I initially said no, not at all, but when I thought about it further--yeah! I did, and I didn't really even know it. Why DID I come back? I mean, I have all kinds of reasons to live; my husband loves me deeply, I have two little girls who need me, I haven't buried my parents yet (not that I'm looking forward to that) and I'd never put them through burying me before them if I could. But people in the exact same circumstances die all the time. That's not all it takes to stay alive.

So why did I come back? I don't know. I imagine it'll become clear as time goes on, and in the meantime, there are my children, my parents and my husband, and my readers. And myself.

My therapist got me to commit to one daily physical self-care thing for the week; when I'm depressed I forget to eat, I don't shower, I wear the same clothes for days, etc. All of which I'm having trouble with at the moment. I committed to walking around the block. Did it first thing this morning after I took a shower.

I've been diagnosed with post-traumatic stress disorder (PTSD) as a result of the "spring unpleasantness," as I've started to refer to my death experience in May. It became clear that something was wrong last week when I got flamed at my other website.

Now, I've been on the Internet more than a decade. Flames I'm used to; I've been flambée'd, barbecued and generally abused over the years. That's just what happens when you put your opinion out there. It's really no big thing.

This time, though, I had an overwhelming physical reaction I could not control. My heart started beating so hard my pacemaker took over. I started shaking; I felt nauseous. It was as if someone was chasing me around the house with a hatchet. John said, why are you taking this so hard, this isn't like you! I said, honestly, I'm not. Emotionally and intellectually, this is no big thing. But I cannot control this reaction; it's physical. It took me three days to get myself under control, and more than a week later my adrenalin system is still on a hair trigger. In heavy traffic, for instance, I have to close my eyes (I can't drive any more, don't worry, I'm a passenger); otherwise John ends up peeling me off the roof of the car.

One of my best friends dropped by late last week; she's a survivor of stage IV ovarian cancer. She's not supposed to be here, but she's been in remission for 12 years or so. I told her about what had happened and how disturbed I was about it and she said, "Oh that's easy, Lynn, you've got PTSD. I do too. We fought for our lives and our bodies are still fighting." My cardiologist agreed, and so did the therapist I saw this afternoon.

For the first time I was able to tell the story of what happened to me--thinking my heart troubles were behind me, suddenly ending up in the CICU, the pain-filled week of unstable angina, and then the cardiac arrest, where I called and called for help and NO ONE CAME, and then dying--without having to hold it together. When I talk to my family and friends about it, I have to contain myself; I can't really let it all out. They're so fragile themselves, we've all gone through so much with this.

So today, when I finally let it out...man. Here it is hours later and I'm still shaky. I cried so hard my voice is hoarse. I didn't think I could yell that loud. The depth of my emotion took me a little by surprise.

I'm totally wiped out now. I've been having trouble sleeping, and I'm hoping that now that I've finally had a good cry--if sobbing your guts out is a good cry--I can sleep a little. I'm going to try to sleep in, that much I know for sure.

Mehmet Oz is a cardiologist who gets why heart patients are so pissed off (finally!), and understands where alternative medicines can help. This is a great interview from the great public radio show Speaking of Faith.

Right now I'm seeing a Traditional Chinese Medicine (TCM) practitioner, who I'll call Dr. K. My cardiologist recommended him, which blew my little mind. Dr. Matt and I are on a first-name basis now, after four years, two heart attacks and a cardiac arrest. We have achieved a state of clear with each other.

He knew as soon as I got out of the hospital that I'd be hitting them Internets looking for supportive/complementary therapies, if only to mitigate the side effects of the allopathic meds I'm on, which are not trivial. (Biggest problem: I'm absolutely exhausted a lot of the time.) He said, look, I know you, I know what you're going to do, and I just beg you, please do this with supervision. He said Dr. K understands drug interactions, please go see him.

So I'm seeing Dr. K. While his English is way better than my Chinese, which is limited pretty much to "ni hao!" and "xie-xie!", his accent is really thick. I find that it makes me listen harder, interestingly, and I remember what he says without taking notes. He did some acupuncture on me (immediately got the blood flow going in my compromised arm) and prescribed some Chinese herbs and also tai chi practice.

I'm brushing up on my tai chi forms--it's been years, I can't even do cloud hands properly any more--and taking these really disgusting herbs. I mean, wow. I thought I'd taken some foul Western herbal medicines. Valerian comes to mind. Valerian is almost palatable compared to powdered snakegourd rind (gua lou pi) and cordyceps mushroom (ling zhi). It got me wondering: Is this Dr. Matt's revenge?

I'll let you know how the treatment is going. So far, I'm a bit worse (ache-y mostly), but that sometimes happens at the beginning of TCM treatments as the liver clears out.

Snakegourd. *shaking head* the things I get myself into...

This has been an up-and-down week. I have had some of the suckiest days EVER this week--repeated server/political troubles, getting the news Thursday that I would have to keep giving myself shots of Lovenox in the stomach through Monday, etc etc. And yet, on the whole, I am bouncing back from all this MUCH faster than anyone thought I would, especially me.

I am taking the stairs nearly as quickly as I did before this last bout of trouble. I am napping only an hour or so a day. I can shower unassisted, and standing up; usually after a trip to the hospital this long I'm sitting on an overturned bucket for close to a month. My color is good. The swelling and discoloration in my left arm (from last weekend's blood clot) is down to a very very dull roar, as is the discomfort in that arm from the surgery. I'm nearly used to having a THING in my chest and not feeling the corners of the box quite as acutely. My surgical wound is healing well. John thinks it's because my heart is finally working well.

Having said all this, I think I need to go pound my head against a plank for a while; nothing like tempting fate.

Just got back from yet another hospital stay. This time I had a blood clot over the ICD (defibrillator) site. I'm drained and exhausted but I'm home.

Walked to the southern corner and back. Longest I've walked since the 6th and the first outing I've had. It felt good.

Well, I'm recovering. I'm getting a little stronger every day. I still need a nap every day and I'm still taking extra-strength Tylenol (and yes I'm being careful about the dosage) for my incision pain. But overall, the trend is up. We've already dropped two of the eight medications I'm on as I've stabilized. I'm up more than I'm in bed. I haven't lapsed back into congestive heart failure. No angina. So far, so good. Thanks for all your prayers and good wishes. They mean more to me and my family than we can say.

JJ Again.

We always watch dr. who together. Actually, I watch it, and she kinda watches it and does blogging at the same time. I think she humors me.

Today, i worked. Not from home, i worked at work. It was odd, and I felt empty, but it was important to me to reconnect and get back to what I know and love.--read more

There's an organization called Warm Up America where volunteers all across America knit and/or crochet 7" x 9" squares that are then sewn or crocheted together into an afghan. --read more

Lynn had a mild heart attack last night and is back in the hospital. Her mother is flying up today and her knitting circle friends are circling the wagons to help out, too.

Don't know anything more than that right now. So let's keep those prayers going and the candles lit for our Lynn.--read more

I spent the weekend in the cardiac unit at the hospital. It's been two years since I've been in there. I'm okay; it was another coronary spasm, but no damage this time. I'm depressed that this happened and very tired, but okay.

This is my first blog ever, so it should be interesting to see how it works. I just found this site, and am glad about it. I'm a new wife, homemaker and mother of a 5 year old stepdaughter. I'm trying to learn how to adjust to married life, household management, motherhood, and managing a chronic illness in a new environment where I have less time to myself to rest.--read more

DIY electrocardiograph (EKG) kit. So tempting to get one.

Now that medical science has figured out that my anxiety, stress and fear of dying comes from having had a heart attack and two years of angina--by the way, thanks guys--I've resolved not to have any more heart attacks or angina. I should also thank medical science for having caused the heart attack in the first place, resulting in all this personal growth. (I wish there was a sarcastic smiley. I'd wear it out, though, so its absence is probably a good thing.)

Part of the plan is to get more exercise. The problem is, the aforementioned fear of pain and dying. More ranting on the flip. --read more

I made killer wheat-free pancakes today. I'd put this in recipes but it's really kinda amorphous for that. I'm a notorious dibby dabby cook. But those of you out there with wheat problems may appreciate this, even with its inexact nature.--read more

does anyone have any good mattress suggestions. i was told by a friend that simmons brand is great or tempurpedic (idea developed by NASA). I was hoping to help my back and get some good sleep for once.--read more

I know that someone here is has chrons and I was curious if you had heard of this drug they have recently put dh on. Its called pentasa? The dR put him on it a week ago and now he has to go in for a ct scan then in a month they will do another scan to see if it is helping.We finally after 3 years have a doctor that is doing more than saying here have another pain med.He had stopped even going to see any doctor for a while and I was worried he was making himself sicker by not getting any treatment.--read more

So, last summer I got my diagnosis of symptomatic PVCs. I was given two kinds of medications, and really, I was doing much better. I had a couple weeks of very noticeable PVCs back at Easter time, but that passed with a little caffeine control.--read more