It’s August 30th and I have zero posts in the queue for September. This is very unlike me; I usually don’t feel okay unless there are thirty posts scheduled at a minimum. My assistant asked the other day, “Do you want to keep doing it?” My answer was yes, but. I do, but. But what? 

Let’s see. There is the dog, our Choux Choux cabbage-cabbage who in the space of 6 weeks developed a luxating patella in her right knee that went from “loose” to “permanently out.” In lay terms, her kneecap is now permanently dislocated. Initially we determined we’d put her down; we don’t have thousands of dollars to create a bionic dog. We don’t want to start down a road of surgery after surgery until the dog has been tortured to death. It is not her only issue; like many of those cute, pink Pits, she has very delicate skin. I should really be ready for either my Vet Tech or CNA certificate, there is so much medication management. We have spent a lot of money on vet bills, and I am now seriously a caregiver for this 11 month old baby. She’s on pain meds, Benadryl, Apolquell, Dasuquin, antibiotics (allergy related skin infection), fish oil and something else I can’t recall just now. Twice a day. 

Ultimately, as a family, we couldn’t—just couldn’t—put her down. She will have a patellar implant in two weeks (basically a knee replacement), in a small city two hours away, where a vet who is one of 23 in the country who does this will operate on her for far less cost than anyone else because he’s from New Mexico and wants to help animals more than he wants to get rich doing it. So while we are having a surgery for $2400 that would cost upwards of $6000 anywhere else, we are still spending money we don’t have lying around. Should I be sending that money to Houston? I worry about these things. But we are hopeful that we are saving the dog and giving her at least a good run of years before anything else goes wrong. 

Also, there is this perimenopause bullshit. I spend nearly every morning trying not to cry over, oh, let’s see, politics, hatred, stupidity, ignorance, how much I dislike other people, how touching some bullshit meme was, anything involving animals, etc. My body threw two periods in one month at me, I’m nauseated a LOT, I’m tired. I would like a word with the designer of this mess. It is the greatest proof available that there is no god. Or that god is a white republican man and like the rest of them he hates women. 

We are having the typical back-to-school crisis of “I can’t do this” and “I am failing” and “I could ruin my life” on the part of the teenager. I have assured him that there is zero chance that failing geometry will “ruin” his life. Lives are not ruined by such things. We put so much pressure on kids and it doesn’t result in success, it results in neuroses. He is 15. I remember the list of things my parents said would ruin my life. Sex. Alcohol. Drugs. Bad grades. Lack of school spirit. Television shows like Miami Vice. Music. 

I did all of those except bad grades, and did not ruin my life. Because: seriously. Let’s just calm the fuck down. 

I have been meditating daily for just over 30 days. I am using Headspace (they are not paying me to say that but if they want to, I’m in), and while I initially balked at the annual subscription cost (70 to 80 bucks) I then thought, “Didn’t you pay a game club $6.99 a month for YEARS so you could play hidden object games?” Oh, right. It’s not that much to pay for something that helps. And it is/does. Not as fast as I’d like. Which must mean it’s more legit than, say, cocaine. 

Speaking of drugs (I’ve never done any beyond some edibles that had no discernible effect) I have also cut back to one alcohol a day. The discovery of my allergy to sulfites coupled with reading an article about how women are drinking to escape their lives resulted in a decision to stop buying into what society wants me to think it great about booze. I never thought it did what it said it would do—in my experience being buzzed makes me even more worried about screwing up, adds to my health problems, limits my life and creates conflict. But the commercials and the movies and the world say that alcohol is how I can be liked, and normal, and FUN, and interesting, and cool, and awesome,  and relaxed and exciting….it’s a hard stream to swim against. But I am. Soon, the one drink will go away, too. I’m not stopping–Saturday afternoon margaritas are nice, frankly, but in terms of spending every night of my life in a stupor, I’m done. I will be present, I will look to address what I find unbearable rather than drinking to cover it up. 

There are marital issues. I am the person who will have to save it, and I am trying. It’s really hard work. I want to be married to the person I am married to, but things have to change. I am, currently, the one most able to force those changes, if they can happen. Because that’s not stressful. 

I am still wearing clothes, and we are still mostly taking pictures….but I haven’t really gotten the posting up to speed. Switching to iPad didn’t help that; there are conflicts with how I’ve done it all in the past that have caused me to sort of mulishly stop short and refuse to forge ahead. We’ll see what happens. 

EDS is flaring up, too, just for fun. My wrists were terrible yesterday, so bad that I taped lidocaine patches to each before going to bed. The lidocaine helped, but because my skin is also malformed, I have blisters and sores along the edges of where the tape was on each wrist. Awesome. The main thing we do for EDS is splint, which I did all day yesterday, but even that hurts my skin. I could never wear splints daily–I’d have the equivalent of bed sores all over me within days. So that which helps also hurts. It’s frustrating in the extreme. 

So, maybe there will be pictures for September, maybe there won’t. Maybe there will be more writing. Heck, anything could happen. It’s kind of “one day at a time” around here, at the moment. 

Reflecting on a Life Long Mid-Life Crisis

I will turn 48 this month and while I hate being typical, I am being typical in that it’s eating my lunch. In part, this is due to realizing that I will be less than 7 years from the age at which my father died. That’s a shocker, although really it is only math. I am no more or less likely to die at my father’s age than any other–and the women in our family live into their 90s. On my mother’s side. Which is the side I am counting. Still, my tendency to the morbid makes me wonder what it would mean if I had only 7 years left. 

On second thought, let’s not think about that. Delete file. 

There is a great deal of patriarchy-inspired baggage that comes along with aging as a female. On the surface, a trifecta of concerns: Loss of sexual attractiveness, becoming invisible, looking old. I spend a lot of time lately disliking my body for various and sundry reasons that include being “fat” (don’t freak out, I’m coming right back to that to explain), being “ugly”, being “old”. 

On “fat”….I am not fat. I know this. I am bigger than you think I am because I don’t show you the bits that are large. As I have delved into this consciousness-raising that is body positivity, I have found a secondary trap: I can, really, truly, completely honestly love just about anyone else’s body. But not mine. It’s a situation of “growth:but”. Does your belly bother me? No. Your ass? Your cellulite? No and no. Your varicose veins (Okay, let’s be honest, mine bother me and yours bother me because they bother me in general)? I am bigger than I would like to be is what I want to say yet, if I unpack it a bit more, what I come up with is that I don’t feel healthy or strong. I feel soft and weak and therefore, old–but not wise and wonderful. “Fat” is just a stand-in word for “I don’t like myself.” 

I compounded this by going to see Atomic Blonde this past weekend. That is a fantastic movie, btw, met and exceeded all hopes and expectations in terms of every possible quality.  It also, though, brought up that feeling that much of entertainment does: I cannot possibly ever be that impossible combination of skinny, flawless, strong, bad ass, warrior superhero female. (Wonder Woman, I am sorry to say, did not make me feel this longing at all, and I entirely blame the costume and the decision that she never once got dirty no matter what she was doing). How much do I want to be Charlize Theron in that film? So much it hurts. Which exists right alongside the reality that even Charlize Theron can’t be Charlize Theron in that film. 

I have long (since the age of 6) relied on a serious fantasy life that I discuss with no one but that has allowed me to steal away from reality and become something I am not. It’s intensely private, and I mention it here only because it’s a way of pretending to be the thing I am not and can never be. The person I pretend to be in my fantasy world aged along with me from about 6 years old until around 30, 35, hell, maybe she’s 40, but not in the way that *I* am 40. She is now sort of ageless (for a fantasy, I tend to be very hard on myself for some of my continuity issues, this is my cosmic ability to ruin something for myself for no reason other than to continue the process of criticism I was raised with–I can interrupt a whole pleasant episode by getting concerned that I haven’t attached an exact age, and am I being true to myself by imagining a younger woman, etc). I remember when I was little, I worried about the normality of this fantasy life, this serial pretend story that I “wrote” in my head constantly and tried to obliquely ask my mother about it (whatever “oblique” is for an 8 year old) and wound up being told it was fine to “play pretend”. This was not satisfying, and I worried and still do that I am utterly WEIRD and probably pathological. I have never raised it in therapy because I don’t want to ruin it with analysis. But. It’s those times when I find myself mourning the fantasy and finding fault with reality that I feel, well, like I’ve been poisoned by the false expectations and requirements for being The Right Way and am just perpetuating that with my fantasy life. I mentioned I overthink things, right? I do that. 

No one is Charlize Theron in that film. No one is my fantasy self. Nowhere are we taught to be satisfied with what we are right here in the world. I try to say to myself that my body, it’s doing a damn good job of just keeping me alive, especially since I’ve got a lot of extra damage since I didn’t even start out with a complete set of collagen–from the get go 35-55% of my body’s protein is flawed. I should be celebrating every day that I get up and walk around, right? Yet, there rises the image of Charlize Theron, gritty, bruised, injured, raising her perfect body out of a tub of ice cubes and then her body double (guessing) naked at the mirror and I feel exquisitely not enough as the reality of, say, throwing up because my bath was too hot last week tries to run alongside that. 

So, maybe, 48 will be the year that I get closer to closing the gap between who I think I ought to be because of a toxic culture and who I *am* despite it–and find a place to feel okay about it. To remember that no one is what we are shown we should be. To grasp that it’s okay, more than okay, it’s fantastic to be right where I am. The year I stop worrying what people will think of my (gross weak eww) body and just go forward, unapologetically, with the packaging I’m in. To look at my body without thinking gross, weak, eww, and to not even care if that’s what someone else (a 20 year old who fears aging and fights it with savage critique, for example) might be thinking. That’s a tall order, I know. I sense in myself, though, a growing weariness with buying into not being enough. I suspect that means I am getting wise, even as I worrry it means I am getting old and will soon start wearing orthopedic shoes and sweat pants. I’ll save them for 50; although that may be only to burn them on a pyre made of birthday cake candles. 

This, That, The Other Stuff

I haven’t written about me, or my IBS, or my EDS, or my anxiety or any of that in awhile. Don’t worry though, we’re all still here, hanging out at home all day. It’s cool. Choux Choux is here, too, so she takes the edge off.

Seriously, though, I am coming out of a massive…flare? Disaster? Large Scale Attack? on the IBS front. First things first, I realized that each time I would have a surprise diarrhea attack, I would immediately, and somewhat seriously consider suicide.

This is bad.

So finally I came clean (ha ha ha) to my spouse, from whom I hid most of my problems with a Victorian level of secrecy, because naturally if he even knew I had a colon and that it malfunctions he would of course immediately leave me. I said all the words I vowed never to say, like “diarrhea” and “suicide” and “cannot live this way.” My shrink was very proud of me. It was exactly like they say in every stupid Lifetime feel-good release your secrets kind of thing in that I immediately felt better. My gut didn’t, it’s resistant, but I did.

So much better that, while I was waiting at the vet to have the cat seen for her most recent Fight Club adventure, and my lunch notified me that it was leaving the building post-haste, I did not wish for death. I said to myself, “I am actually really fucking glad that I have the cat with me right now, since she’s in the Box of Meow and I can walk away from her” and “They have a bathroom and it’s clean and available and that’s good.”

Guys. This is like maybe I won’t have to be reincarnated again and can go on to whatever it is instead of coming back here to earth and doing this shit all over one more time.

Also, I figured out two things about my recent bout. Thing one is that I think I have been poisoning myself for years with red wine, which has sulfites, which I am allergic to (and which I knew, because I have asthma). Why didn’t I think it was an issue? Because up until I found out that my preferred wine retailer voted for Trump and I therefore boycotted them and switched to boxed wine from Walmart, I was not drinking AS MUCH sulfites as I assume are in box wine. Thing two is that I was once again (for the JILLIONTH time) hoodwinked into believing that something in the world of supplements (swindler’s world) would help, and started taking something called, horrifyingly, Intense Bowel Support (which had to be hidden and taken secretly because I was a freak). It is supposed to be taken with food, and has a digestive enzyme component.

Want Dumping Syndrome? Take that when you eat. Digestive enzymes do their job just a bit too well, it turns out.

As anyone who is chronically ill knows, it is tempting to think that you have found THE THING THAT FIXES EVERYTHING. In reality, what you end up doing is finding Some Things that Fix Some Things Some Times. More Often Than Not is really your best case scenario, and if you can accept that, and not go back to “It’s back I must kill myself” and instead say, “Oh, well, yes, this one time in 20 days, which is way better than every third day when the Immodium wore off” then you will actually be happier.

So, things I am doing:

No red wine. I switched to Vodka. Not only did my gut respond, some of my flushing issues got better.

No Swindling Supplements. None. My body can make what it needs ffs.

Chia seeds. Chia are my front line bullet sponges, hanging out in there, doing border security and slowing things down. Skip my daily 2 tablespoons in cherry juice and things go wrong.

Hypnosis. YES. WOO WOO to the fucking WOO. I don’t care. It’s 25 minutes, it has no side effects, it makes me relax, and I feel a little bit more like I can handle my life. Is my gut getting the unconscious hypnotic suggestions? Dunno. Aside from having to say to one’s teenager “I have to go do my self hypnosis for IBS and I CANNOT be disturbed” it’s pretty painless.

So why am I telling you this? Because maybe you are searching and searching and asking the Dr Google Oracle to help you with something you are so embarrassed about you have to open an incognito tab just to do it, and maybe you find me, or you find some other blog ( is WONDERFUL) and maybe you feel less alone? Less like you are never going to be okay? Less like a freak? And maybe I feel better for letting go so some shame–which, honestly, why do we shame ourselves about our bodies? How weird are we? We are weird, man, pretty fucking weird.


The Incompatibility of Christmas and Chronic Health Issues

A few weeks ago I visited my PCP about trying that new IBS-D drug Viberzi. He gave me samples and called in a prescription. But the RX would cost me $100 a month, and the drug warnings included that it is not for people who drink.

I drink.

I also prefer my pancreas to be healthy, so I decided to forgo the new drug. Instead, I thought I hit on a genius solution. One Immodium at night. Initially, it seemed perfect; slowing my system enough that I felt like I had control over my wayward innards and wasn’t spending a fortune or risking other organs to do it.

Ah, but–the bitter pill (seriously, it tastes like shit if you don’t swallow it fast enough) was that it slowed things down too much. I got heartburn like the Devil. If I ate a normal sized meal, it sat and sat and sat until I offered a name placard and formal office space. I stepped down to half of a tablet at night. But, then, it was Christmas Eve. For us, Christmas Eve means posole and tamales and all that. I LOVE posole. This year, however, posole did not love me. In fact, posole caused me to feel like the Hindenberg but without opportunity to explode. Every time the puppy stepped on my gut I thought I might literally burst. I kind of hoped to burst.

Up and down all night, I (surprisingly wisely) forwent the Immodium that night. So things got a little better, but I still spent Christmas Day with nausea and heartburn. I fucking ate posole for lunch anyway, dammit, because I’m not ready for my old age and plain oatmeal for every meal.

That kind of thing is just normal stuff for me. No one but me knows I am suffering at all, and I was pleased that at least I didn’t get a migraine like I did last year on Christmas Day. I had my usual back pain, wrist pain, and thumb pain (puppy-wrangling takes its toll as she gets bigger). I spent a lot of time on the floor fetching presents and redirecting Choux-Choux and playing with my granddaughters who are 6 and 2.

Once everyone left, I was feeling pretty good about the whole thing, but I stepped on a rawhide on the kitchen floor and being the tremendously graceful creature that I am, I fell down, smacking my knees then hands to the tile floor. In front of my husband who was….wait for it…..looking at his phone so he didn’t see it happen. I have some lovely bruising starting on my knees as fond mementos. So, that’s the other side of photos of great clothes, style, hair and makeup. If he had taken a picture, we would have had a great “I Hate Sundays” post but no, he lacks dedication. -eye roll-


An Ode to Lyrica

My PCP and I had agreed, some time ago, that once the heart madness settled down, we would pursue finding a drug that would potentially work on generalized anxiety, the gut issues and migraines. The theory was that since the gut and the heart are very dependent on one another, medication that soothed the other issues would also benefit my heart. It was solid reasoning.

We already know that Cymbalta is not our friend (serotonin syndrome, up for two days clenching my teeth and wildly anxious). We know that Effexor is an enemy (19 day period, folks, NINETEEN DAYS). So, we tried Lyrica. After about 2-3 days at 50 mg a night, I was having migraines that were back to easily aborted with Fioricet. So we went up to 75 mg at night, while still carefully weaning off the Xanax–and I haven’t had a migraine since.

The first issue were the dreams. They are nearly hallucinatory in nature, and they go on all night long. I wake up, I am mostly aware that I was dreaming, I go back to sleep and it picks right back up. Sometimes I would think that a conversation that happened in a dream had actually happened, and have to then try to figure out what was real and what wasn’t. As usual, I wanted to be a good patient and not quit too soon. I could handle weird dreams,  told myself, even if they were more than just dreams and disrupted my sleep and emotions and I was starting to fear them.

Last week, I noticed that I was having small, random thoughts of suicide. They didn’t even seem to be my own thoughts, they were just there, briefly intrusive, then gone. I texted this to my PCP but he was on his way out of town and trying to finish my FMLA paperwork and I think he didn’t see it. So I mentioned it to my spouse (who is sometimes not so well equipped to respond to these things emotionally and immediately asked if I was saying I wanted to quit my job–the thing is, when people say they aren’t sure they are thinking rationally, it doesn’t help to ask questions that demand rational answers).

A few more days of monitoring my intrusive thoughts (“you could just take the whole bottle of Xanax”) and I texted my PCP that Lyrica is, along with so many others, not the option for me. Backing down to 50 mg last night the dreams were so hallucinatory and weird that I really feel I didn’t sleep at all. I’ve advised the spouse that in a week, he may need to be in charge of dispensing Xanax if I begin to crash and my brain is not my own for awhile. And, of course, that means the migraines may very well return.

Back, as always, to the damn drawing board. I hate the drawing board.


The first weeks of each year, my intro lab class learns how to measure an actor for costumes. This is what we do; we cast a show, we measure actors, we make costumes for them and pull shoes and such for them, and it’s all based on those measurements. There’s a lot involved–how do you best approach a person you may never have met before in order to measure their bust and hips and inseam? What is proper etiquette? How do you efficiently wrangle a 60″ vinyl measuring tape so that you can see the numbers and not pull anyone’s hair or get tangled in your own web?

Measuring physical attributes is much easier than measuring less concrete things. I am trying to measure less tangible stuff right now, like, “How hard do I push to have a wrong corrected that is actively impacting my job?” or “How disabled am I?” or “How sick is chronically ill? What level of chronically ill am I?” My FMLA paperwork came back today granting me up to eight days a month of leave. Last year it was four, and I never took them. I took an hour or two here, or there, a couple of half days. An entire day a week? Unthinkable. Thus, TWO DAYS a week? Ha!

A FB and real life friend posted something the other day asking at what point does one measure their job as too much? When they cry once a week? Have to start taking anxiety medication? Have panic attacks at work? Another friend posted that she once found herself driving to work in a snow storm, and thinking that if she just let the car slide a little ways into the guardrail, she’d be able to call in sick due to having had an accident. I have an extremely talented friend who said to me, about her job, “Part of the time I think I’m just really important to this job and then, suddenly, I think I need to resign immediately because it’s so awful to be here.”

Stress and a chronic disorder play off one another, and it becomes hard to manage. My facade gets better and better the more stressed I am, a trap I designed for myself long ago and have spent a lot of time trying to undo–sometimes with more success than others. Coming out of this particular summer with less than zero emotional resilience in the tank, it’s hard to measure which things are temporary and which are indicators that I am taking on too much and remaining in a toxic environment long past when it’s worthwhile. I can’t, yet, measure the distance between this and the next thing—which is why I’m stuck, at least for the moment.

Women Are Anxious So It Doesn’t Count

Right? I am lucky that my spouse and my PCP know that I am not anxious because I have labia/ovaries/a uterus, but the rest of the world? Good luck.

I had a shrink tell me once that worrying is like wishing for something bad to happen, which gave me a complex on top of my complex (a duplex? Complexi?) because now I was worried that by worrying I was making the thing I was worried about happen and I didn’t want it to happen that’s why I was worrying! Job security for one of us, there.

I also know that worrying is a form of wanting to be in control of things. WHAT? Yes. I have anxiety because I feel responsible for things I am actually not responsible for, and nothing gets me stuck in that head space like medical stuff. The next heart procedure is scheduled for August 5th in Austin, Texas. Here’s some things I’m worrying about:

  1. Long have I monitored my blood pressure and pulse with a machine I felt I was too young to have to buy, but now it has become a very unhealthy, possibly abusive relationship as I check it 50,000,000 times a day. The last few days have not shown the numbers that indicate the PVCs so yesterday I panicked over that because what if I spontaneously healed and we go to Austin and I waste our money being told to go away by the surgeon? And IF that happened what if then the PVCs returned mid-semester and we had to go back to Austin and it would be more complicated and probably ruin Christmas and I am sure you are really, really glad they haven’t come up with a home EKG machine, I know I am because I would do nothing else all day long. This particular thought spiral truly has no end, so today I have checked it once and am going to try to take a break (but not see other bp machines) from that relationship. It can only show me one thing which is how fast my pulse is and while the low numbers are often indicators even if they aren’t showing up that doesn’t mean anything at all, let it go let it go let it go…..
  2. I will likely have to take FMLA and miss the beginning of the semester because of recovery time, but I can’t get that ball rolling right now because the medical assistant in Austin (whom I emailed with questions first thing Monday morning) hasn’t replied. My anxiety thinks it’s because I have already annoyed her and she hates me and will order an extra IV because I am bugging her so how much worse will I make things if I call to follow up so that I can actually PLAN AHEAD so that my workplace can figure out what to do without me for what is currently an unknown period of time? Yet, until I know how much time to amend my FMLA for, I can’t do anything at all. Except play that fucking Match 3 game (Wizard of Oz, very addicting).
  3. I think I have an ear infection, but my brain has decided I have some flesh-eating bacteria and I am really sitting on my hands not to text my husband and give instructions for what to do if the only way to save my life is by lopping off appendages (send me to hospice, dude, I need hands to live) and such. Because: my crazy is self-aware.

I could go on, but you surely get the picture. I am not asking for advice, really; Xanax and I spend our evenings together with a glass of wine so that I can take a little brain-break, and it’s thought that once the heart thing is controlled, the anxiety will ease off. My PCP and I have further plans to try medication for generalized anxiety that also stabilizes the gut once this cardiac thing is resolved. Right now, though, all I can do is white-knuckle it and try to laugh at what my brain comes up with to trip my trigger with.

Just Gonna Slip a Little Update In Here….

Three weeks post op, the Cardiac Electrophysiologist (EP) has deemed the ablation a failure. I had about a week where, for me, my heart settled into a pretty good rhythm, then a week ago last Sunday we were at the movies and I almost fainted. I wrote it off to a horrible scene (we were watching a documentary, ffs, and there was no warning that we might suddenly be treated to some ISIS type cutting a living person’s hand off in grainy footage) that was the sort that will live in my brain forever.

Later in the day, though, I got fainty again. By that Monday I was back in the bad PVC rhythm, and it was clear from the EKG I had on Friday that it is the same PVC they had hoped to have ablated. I spent the week a) feeling very unwell due to heart weirdness and b)feeling extremely anxious about what the EP would say. And what he said was that the Ablation failed. On our way out I had to go sit in the pubic bathroom stall and cry before I could get it together enough to get in the truck to go home. It’s beyond disappointing and frightening.

Now there are a bunch of unknowns. Tomorrow the EP will call to let me know how soon they can send me to Austin to see the Numbah Won Guy in the country or the world (the EP debated this a bit as my mind murmured, “This is internal dialogue, sweetie, internal.”) who will do an Epicardial VT Ablation. This is rare enough that the internetz and Dr Google have little to offer me beyond technical journal articles. There’s no
“What to expect from this procedure” or “What IS this procedure exactly” or “How soon can you have it after having the catheter abalation?” etc. Also, I have developed a really unhealthy relationship with my blood pressure monitor.

In the meantime I feel worse than I did before the first procedure. My pulse yesterday ranged from 137 to 46. There is no way a person can feel good with that going on. We don’t have a savings account for “have to fly to Austin for heart surgery” nor do I know how it will affect my job. I suck at unknowns and that adds to the anxiety I already have because of my heart not working correctly and my brain’s conviction that I am dying.

That said, it’s a holiday, so I’m just going to have to Xanax my way through it and try to have fun. Fortunately I am wearing an outfit I made for today, so at least I look good.

A Few Things No One Told Me….

…..about heart surgery.

  1. It is known to cause mood disturbances, particularly anxiety and/or depression. In other words, at least for a period of time, I apparently find everything overwhelming, worth crying about, and/or terrifying. im-not-anxious
  2. It can trigger ocular migraines and regular migraines. I had an aura 3 hours post-op, and took my Fioricet (which, for me, if taken as soon as the aura hits, will allow me to dodge the pain–but keep in mind the same process is still going on, so take it easy anyway). Three days later, I had another one–Fioricet again dodged the pain, but for at least two more days I had trouble locating words in conversation (that feeling of searching for a word you know, with a noticeable lag before finding it like it was right there the whole time). The night before last, at 12:35 am, I woke up with the worst headache I’ve had in my entire life. I thought I was having an aneurysm, but I’m alive so I guess not. I had residual headache and nausea all day yesterday. Normally I have a migraine not more (and frequently less) than once a year. 938991
  3. While they did say it would be awhile before my heart could settle into a normal rhythm (IF the ablation worked, which we won’t know for 4-8 weeks), they didn’t say, “It will be like an amusement park in there” and my heart will be unable to settle on any specific activity any more than a toddler can. Also, although I called the Electrophysiologist’s office when my heart returned to the PVC rhythm we were trying to eliminate, the receptionist just said, “It will be that way for 2 weeks.” I said, “But my blood pressure is still all over the place as well” and she said, “That’s for your cardiologist to address.” Um. A) No receptionist is qualified to answer my medical questions and B) how can these things be viewed independently? if-you-are-yzznlw
  4. Appetite changes. No one can answer my concerns about weight gain, although sometimes my fingers are too swollen to remove my wedding ring and sometimes they aren’t, so I am still convinced I am retaining fluid even if no one else is. I gained about 2 lbs SINCE the ablation, yet, I have ZERO appetite. Yesterday I forced myself to eat two scrambled eggs, one piece of birthday cake (grandbaby’s birthday) and had a cup of gross microwaved mashed potatoes. That’s it. I promise you, I weigh as much if not more this morning.

Keep in mind, my procedure was far more complex than the average ablation for PVCs, which certainly suggests that the recovery will also be longer and more complex. But if you have had something similar, and are wondering if you are crazy, you probably aren’t—they just didn’t lay it all out for you as clearly as they could have.

We’ll Call It “Busy Monday”

In between all the fashion, sewing, drawing and such, Artful Blasphemy is also always dealing with a chronic condition–Ehlers Danlos Syndrome (EDS). There are a myriad of co-morbidities (conditions that appear along with EDS, sometimes for reasons unknown beyond that they do) and also there is a certain amount of unpredictability, as collagen is present in 90% of the body’s structures, and if your collagen is flawed, then…shit happens.

After a year of increasingly debilitating arrhythmia, I had an Electrophysiology Study and Abalation on Friday, June 10th. Yeah, just. This involves the patient being sedated while a catheter is inserted into the big vein in the groin, through which leads are fed to the heart. The doctor watches for the offending electrical impulse and then burns it for 2-3 seconds to stop it. It is generally the only curative option for arrhythmia. Naturally, my particular form of Premature Ventricular Contraction was rare and interesting. Oh, how my heart (ha ha) plunges when a specialist uses those words. My hair is interesting, my clothes are interesting, please; let us leave the body to be dull, predictable, average.

The surgeon who did my procedure is one of two in the region who work with my interesting type, and he flies into El Paso from Austin once a month. When he spoke with me pre-op (as the cocktail of valium and benadryl did absolutely nothing to calm my ass down), he asked, “When do you notice the PVCs the most? What are you doing when they happen?” I said, “I have them all the time. They wake me up at night, they are really bad in the morning, they never go away.” He was surprised. He said that the use of general anesthesia often suppresses them which is why they use lighter sedation (something I was beyond, beyond terrified about for a week ahead of time). By then I had been assured by the kindest anesthesiologist I’ve ever had that I would feel nothing, no matter what they were doing, and even if I were awake enough to answer questions. He told us it would take not more than 2 hours, 2.5 at the outside.

It took 3.5 hours. Instead of going just through the vein in the groin, they also had to go through the artery as well, because they had to access it from both sides of my heart. He told us that the PVCs were constant, my heart was never beating in a normal rhythm. (That makes me feel a lot better about how badly I have felt the last several months, and how overwhelming so many things were becoming, like work, which became extremely stressful and not just because my heart was completely off kilter, but one feeds the other) Whereas normally, once the offending impulse is located, it takes 2-3 seconds of burning to eliminate, mine took over 30 seconds, from both sides. Which means I have an angry heart that needs some time to heal now.

I have never in my life met a surgeon who was as kind and warm as mine was. He dismissed nothing–no concern of mine was too small. I asked if he understood EDS, and he said he had researched it and would be sure to be as gentle as possible with my vessels, and would be using smaller wires to avoid stressing them. He hugged the team after the procedure, he knocked on my hospital room door and didn’t come in until invited, he called when he was running late to let us know and to apologize. He explained to my husband that I would have chest pain following the procedure because so much had to be burned, and that it would cause anxiety (NOT because I am a girl) because my brain would interpret that as a heart attack.

These days, hospitals don’t release you because you are recovered, they release you as soon as they suspect you won’t bleed out or anything. I’m told to expect it to be 10 days before I feel 100%. He said I would have periods of fatigue because my heart is inflamed and swollen from being burned. I cried all the way home from the hospital, mainly just out of response to big physical trauma, emotional depletion and exhaustion. There’s a series of gross, large holes in my groin, with a lot of bruising. I’m supposed to press down on it if I sneeze or anything. I’m recognizing that when I start to have that sensation that I am going to start crying, it’s time to stop whatever activity (reading, sitting on the couch, playing Match 3 games on my phone) and go take a nap.

Being forced to slow down is difficult, but if this did, as they believe, fix the problem, I may start to feel better than I’ve felt in about a year’s time. That would be nice, to say the least.