The Life You Save May Be Your Own

DID, knitting, sci-fi, and strong opinions

Sick. Again. July 7, 2013

Filed under: Uncategorized — weordmyndum @ 1:57 am
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Uck. Sick again. I’ve spent a lot of the afternoon in the bathroom with a novel, which is what I did at Sheppard Pratt. But hey, at least here I have my bathroom. There we had two bathrooms and twenty people. You do the math. It’s even more fun when you have to go SRSLY RITE NAO and the only bathroom is clear on the opposite end of the unit. I have no TMI filter, but I’ll try not to be too graphic. I’m sure you guys have good imaginations.

To add insult to injury, my computer appears to have fried its poor little brains. My google-fu informs me it’s a common problem with this model and probably requires a new motherboard. Like I can afford that.

I’ve got to find a gastroenterologist here. I guess I need to slow down with adding new foods back. At SP, I was basically eating the same four meals: peanut butter and jelly on white bread, Amy’s red beans and rice burrito, pasta with marinara, and Amy’s teriyaki bowl. I could eat cooked vegetables without seeds, and bananas were the only fruit I could eat. (The dietician told me I could have apples without the peel, and she got really confused when I asked her how I was supposed to peel them with plastic spoons or forks. She was not a brain surgeon.) I got so excited about real food that I added in a bunch of things. Now I don’t know which one I’m reacting to. I guess I need to back off. 😦

At least I’m not in pain anymore. I have a high pain tolerance (yay dissociation), and that is the worst pain I’ve ever felt. When I first got to the ER, I refused pain meds. Five minutes later, I was saying, “Give me ALL THE PAIN MEDS.” They gave me dilaudid, I think, but it did almost nothing. At several points while I was in the hospital, it got so bad I was crying. I don’t think that’s EVER happened. I’m very glad that’s better. But I do need to find a GI doc here so I can avoid that happening again.

I just hate feeling so out of control of my body. Right after the diagnosis, I was really struggling with it, having lots of flashbacks and body memories. There was excruciating pain that I wasn’t causing and couldn’t escape. It felt like I was once again suffering the consequences of other people’s crimes–UC is strongly linked with stress. I knew it wasn’t the same as the abuse, but it FELT the same. My therapist had me write out some past v. present stuff, but it didn’t change the feelings, either. Some of it comes from parts, but I haven’t been able to get much communication going about it.

It just feels like another legacy of abuse. My parents aren’t the ones suffering. If what happened wasn’t my fault, then why am I the one who has to deal with it for the rest of her life? It’s not fair.


Owww: The Next Generation January 15, 2013

Filed under: Uncategorized — weordmyndum @ 6:24 pm
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Diagnosis: peroneal tendinitis

Prescription: rest, exercise to tolerance, and this thing that I swear to god is called an ankle corset


It does help some. There’s still some pain, but it’s better than with the ankle cast. The orthopedist also said I could use just one crutch, which is still cumbersome, but less so than with two crutches.

He said to come back if it’s not better in a few weeks, but I’m hoping it heals by then. I may try to go to kung fu Wednesday night. I probably can’t do a lot of running around, but I should at least be able to hit things. I hope.


Hypermobility January 10, 2013

Filed under: Uncategorized — weordmyndum @ 1:54 pm
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Still rockin’ the air cast, and more awesome hand-knit socks.

I couldn’t get an appointment with the orthopedist until the 15th, which is frustrating. Meanwhile, being off the foot helps a lot, as much as I hate crutches. I’m pretty fast on them–lots of experience from when I was a gymnast–and I’m gonna be awesome at push-ups after this.

I had an appointment with a chiropractor yesterday, and I really like him. He had some trouble fully evaluating because I can’t stand normally, but he still figured out way more about my back pain than anyone else I’ve been to. Apparently when I stand or sit, I tend to hold my rib cage forward more than I should, which creates a backward bend in my lower back. Over time, that wears on those facet joints and causes pain.

My hypermobility is also part of the issue, which doesn’t surprise me. Because my pelvis and spine move more than most people’s, I lack core stability. He said I have plenty of core strength, but I have to start engaging it more actively than most people (i.e., consciously tuck my rib cage back). He gave me a bunch of exercises that make way more sense than the ones the physical therapists gave me–I think the PTs weren’t properly trained to account for my degree of hypermobility.

He thinks my foot is probably a cumulative tendon or ligament injury–again, due at least partly to my hypermobility. I over-supinate–when I walk or run, my feet roll to the outside. This is uncommon; most people with step issues over-pronate (roll to the inside of the foot). The mobility of my ankles and my high arches contribute to this. I may end up needing ankles braces, and he said I definitely need more flexible walking/running shoes.

It’s just so nice to finally get a comprehensive explanation of what’s going on with my body. I don’t like having all these problems, but I feel hopeful that this new chiropractor can help me sort it out.


Owwwww January 8, 2013

Filed under: Uncategorized — weordmyndum @ 6:45 pm
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I’ve done something unpleasant to my foot. It started hurting Thursday, but I thought it was no big deal. I spent the weekend resting (read: too depressed to do anything but sit on my couch and watch Grey’s Anatomy). I thought it was better, so I went to kung fu last night.

Bad call. Hurt like a bitch any time I put weight on it, along the outside edge of the top of my foot. It’s a mile and a half walk back home, and I had tears in my eyes.

I soaked it in a bath and then iced it, which helped temporarily. But it was still excruciatingly painful this morning. My PCP’s office couldn’t get me in until Friday, so I went to urgent care.

They think it’s either a stress fracture that didn’t show up on the X-ray (apparently it can take a week or two to become visible) or an injury to a ligament or tendon. They referred me to an orthopedist, and in the meantime, I’ve got an air cast and crutches.

And awesome socks. But I already had those.

I also saw my psychiatrist this morning.

He suspects I might have something called cerebral folate deficiency, which is sometimes linked to MTHFR polymorphism, especially in people who also have a dairy allergy. I have both. There’s a test for CFD, but it’s not available in the US. *headdesk* However, there is a treatment, and it won’t hurt me if I don’t have CFD. He’s starting me on Leucovorin (folinic acid), which is usually used in cancer patients with dangerously low folic acid levels. He’s using it way off-label, but insurance will cover it.

He’s also starting me on Viibryd to see if that does anything for my depression. I’m not hopeful–I’ve been on literally every other SSRI on the market, and none of them have helped. But it’s worth a try. He has to get a prior authorization with my insurance, but he said there shouldn’t be problems getting it approved since I’ve tried so many other meds. In the meantime, he’s giving me samples. We’ll see if either of these new meds do any good. I hope so.


Unbearable November 30, 2012

Filed under: Uncategorized — weordmyndum @ 3:48 am
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I need to see a doctor.

I went off birth control in February or March. I’d been on it for around three years for PMDD, but I went off it because it stopped helping.

First, it was just that my periods were irregular. No big deal. That happens when you go off birth control, and it’s just an annoyance.

But then the pain. I’ve never had painful periods–I hardly even had cramps, and when I did, a couple Tylenol took care of it. But it’s been getting worse and worse for the last 4 or 5 months. I’ve been using a stash of flexeril that my PCP gave me for my back months ago. It mostly helped.

And tonight is just unbearable. I’ve taken flexeril AND. Vicodin, and it’s still all I can do to keep from moaning and/or screaming. I’m nauseous and dizzy, and I’m alternating between hot flashes and cold sweats. I might even belong in the ER tonight, but I won’t go.

I won’t go because I can’t deal with anyone poking around at my privates. Because it will trigger panic and flashbacks. Because I’m 99% sure I would switch, and I don’t know if I’d end up with someone who’d scream hysterically, someone who’d kick the doctor in the face, someone who would try to beg her way out of there…no idea. And mentally/emotionally, I feel good. I don’t want to deal with abuse and trauma stuff. The pain will go away in a few days.

I know something is probably wrong. You don’t get pain like this if the plumbing is working right. I hate the pain, and I don’t want to be alone with it. But if I tell anyone on my team, they’ll make me see a doctor. And they should–it’s the right thing to do. But I won’t let them do it. Apparently I’d rather be alone with the pain than be alone with the trauma memories.


From the Department of Random November 25, 2012

Filed under: Uncategorized — weordmyndum @ 7:03 am
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Ex-Housemate, the food police and passive-aggressive extraordinaire, emailed me today to see if I wanted to have dinner since she’s moving to New York soon. LOL WUT. Strangely, there’s a part of me that wants to say yes. I don’t get that.

Today’s been a switch-fest. No particular reason, wasn’t triggered or anything. Just everybody trying to do different stuff at once: watch Stargate, sing Christmas carols, knit a hat, play with Winston, play iPhone dragon games, check email, write, eat leftovers, cuddle the baby doll. It was pretty weird. Sometimes having DID can be pretty comical.

I really need to fucking call the list of possible therapists. Things are going well and I’m happy, but I feel myself itching to process stuff that’s happening. I keep thinking I have therapy tomorrow, and I feel relieved until I remember I fired NT. It’s not even that I want to talk to NT–I just want to talk to somebody whose entire purpose is just to sit there and listen.

But I haven’t made a single call, and I’m frustrated as hell with myself. I have a script and a list of questions, but I know no matter what I say, I’ll feel like it’s wrong. I’ll feel stupid and ashamed and panicky, and I might very well end up cutting or purging to shut those feelings off. But for god’s sake, I’m 26. I should be able to make phone calls.

I also need to call the back doctor’s office and see if I can get a follow-up sooner than four weeks. The last two days have been bad pain days, and that’s unusual considering I haven’t been on my feet much. I’m hoping it’s just taking longer for the cortisone to kick in than the last two times, but I should see him sooner if I can. If nothing else, I need to talk to him about pain meds. I may have to ask for something stronger than the Vicodin.

Also, I want snow! All the meteorologists have been saying we’re in for a bad winter, but it’s been fairly warm for November, and no snow yet. As a reformed Southerner, I still think snow is awesome, mainly because I don’t have to shovel it or drive in it. One of my favorite things in the world is to walk down the street at night when it’s snowing. I love the way the snow swirls in the streetlight beams. And last year, I hiked up a mountain in the snowstorm (not my best idea ever) and climbed up to the top of a fire tower. I could actually hear the snow falling. You think it’s silent, but it’s got its own indecipherable whisper.

Right. That’s it for now from the Department of Random.


Peace November 21, 2012

Filed under: Uncategorized — weordmyndum @ 4:16 pm
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I’ve been feeling peaceful the last couple days, which is a nice change of pace.

Since the election, I’d been feeling empty and anxious in all the free time I have now, but I haven’t been all that motivated to actually do anything. There’s a rumor that Obama might name John Kerry to his Cabinet, which would mean we’d have a special election and Scott Brown would get another chance to get into the Senate. If that happened, I’d get involved with the campaign for whoever the Democrats nominated. But as of now, nothing is really motivating me to find more stuff to do with my time.

And there’s a lot of free time around the holidays. No kung fu tonight or Saturday, and Windhorse is closed for Thanksgiving on Thursday.

I think part of why I’m feeling peaceful is I feel more connected to people. It surprises me, in the wake off the incident with NT. but my team has really been supportive above and beyond their obligations. When I fired NT, I called Team Leader, and she listened to me freak out/cry and then calmed me down. Nurse has been giving me rides to places of normally walk because the pain has been bad. Counselor is taking me out to brunch on Sunday with his wife and his adorable baby. Hell, I may even go to the Windhorse Thanksgiving thing, since one of the hosts went out of his way to invite me personally.

It probably also helps that my pain is a lot better today. I had another cortisone injection yesterday. This time he did the sacro-iliac joint instead of the facet joints at L4-L5 and L5-S1. The last two times, I had about a day-long lag between when the lidocaine wore off and when the cortisone kicked in when I was really sore from getting a big needle stuck into my spine, but this time that lag doesn’t seem to be there. The real test is whether I can be active (walking everywhere, doing kung fu) without pain, but right now I’m just happy not to be in pain.

Oh, and I made cookies! Oatmeal-chocolate chip-cranberry vegan cookies, and they’re YUMMY! Cookies make a lot of things better. And I made a big batch of treats for Winston that he loves. Now I just have to get on top of my Christmas knitting! I think I need some new DVDs for that–I’ve seen all the ones I have a dozen times.


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