Okay, so you all probably know what ‘biting my tongue’ means… usually, it means that you’re trying not to say something that you know might not be taken well by someone else, or else, someone has upset you and you’re biting your tongue so you don’t snap back at them. Well, both of these are probably true for me at some point or another through this health ordeal I’m going through, but in this instance, I intend to talk about biting my tongue quite literally.
When I first started writing about my health issues, I knew that it was either going to be an all or nothing type of thing. I was either going to be honest about what was going on with me and share most everything (barring others privacy along the way), or I was not going to share much at all. So that means that sometimes the things I have to share are a bit ugly, embarrassing or awkard. That’s what I have to share today, some awkward and slightly embarassing things, but I think that it will help others who are also experiencing these things to realize they are not alone, not crazy, not gross, ugly, nasty or whatever else you might attribute to these awkward things.
Death and life and health are all messy things. There is no dignified way to die and there’s no real dignified way to live. We all have to shit and spit and sneeze and pee and snork and more. We all do it. Even that super model you see on TV, or those much too skinnt painted on tanned models who do the Victoria’s Secret commercials, they all have to sit on the toilet and piss and shit too. Seriously, they do. Think about THAT the next time you see one of those commercials. While I’m on that side note, just exactly who are the Victoria’s Secrets’ commercials trying to target? The commercials are most definitely made for men, but men don’t buy that kind of underwear, even as gifts, for their women. And the women really aren’t going to be foolish enough to think that they will look like that if they buy the undies… I really, really think the advertising firm for that Angels collection needs to be fired, because that entire campaign is a complete waste of money. Seriously.
Now that I’ve digressed, let’s move on to the ugly awkward stuff….
BITING MY TONGUE
I don’t know what’s causing it, but the past month or two, I’ve been biting my tongue, a lot. Mostly, it happens at night. I catch myself in the middle of the night waking up with pain and realizing I’ve thrust my jaw out and my tongue is pushed onto either side of my teeth, and I’m biting down on it. The right side of my tongue is torn up from the constant biting and it hurts. This morning, it was bad enough that my mouth and tongue was swollen so badly it was affecting my talking. I catch myself doing it once in a while while I’m awake too. I’m not sure if it’s because I’m thrusting my jaw out some because I’m wearing the oxygen cannula or if it’s something else. I do have a seizure disorder from when I was a kid, and I stopped taking medication for that when I got pregnant with my son. We’ve wondered if there’s a sleep disorder going on here, that causes mini-seizure that are causing me to bite my tongue at night. I’ve got some jerkiness in my hands recently too, so it’s possible. Doc is sure I have some sort of sleep disorder, and I’ll be tested for that soon.
Because of the existing blood clots in my lungs, my oxygen is still low–that is, my perfusion–and that means any sleep test for oxygen perfusion would be inaccurate right now, so they are waiting until the clots are completely cleared to do the sleep study, which can be months from now, perhaps as much as a year from now, even. Until then, we can’t know about that for sure, but we can test for other things, so it looks like I’m going to have a sleep study done the end of December. Thank goodness I have insurance now that will be paying for that 100% Yay!
Here’s the embarrassing part, but like I said, I promised to be honest with everyone, right? Well, since I’ve been home from the hospital, I’ve been on very high doses of Lasix (water pills, diuretics). I’m on 60mg, three times per day, but at the same time, I’m supposed to limit my fluid intake to two quarts of liquid per day, maximum, while keeping my sodium below 2 grams per day. I’m trying. I have been going over my liquid allotment just a little bit, by maybe 10 ounces or so, but not a lot, and I’ve been doing okay with the salt. Everything tastes so much sweeter without salt, which isn’t good for me, since I’m a salt nut. I love salt, and I’m not a sweets eater, but I’m adjusting to it. Mrs. Dash is my friend.
So while I’m not literally peeing in my pants, I am having to really rush to the bathroom when the Lasix kicks in, and because of my oxygen issues and the heartrate and the deconditioning, I don’t really ‘rush’ much of anywhere without suffering. So I finally make it to the bathroom, sit down to pee, think that I’m done, then stand up and gush a whole ‘nother round of peeing! It’s been a real pain, but there’s no urgency or feeling that I still NEED to pee or anything. It’s been embarrassing, even though no one else has seen it or anything, but it makes me feel… I don’t know. You know what I mean? So yeah, sometimes being ‘sick’ causes messy awkward things. This is one of those things. We did mention it to my doc and she seems unconcerned about it, but that doesn’t take away the shame feeling of it for me. I know it’s silly to feel that way, but I’ve lost so much.. peeing on my leg isn’t something I want to add to the things I’ve gained, yanno?
HELP! “I’ve fallen and I can’t get up…” (This is a trademarked phrase, so please don’t sue me…I intend to be humorous here!)
Okay, full disclosure. I’ve gained a bunch of weight while being sick. I’ve done nothing to hide that, in that I’ve told you guys I probably have about 100 pounds of water weight on me, so you can venture to guess I’m at least 100 pounds over what might be an ideal weight for me. I’m tall, 5’10″, so I carry it very well, but that means I’m still a pretty big girl right now. I hate that. I’ve never been heavy during my life, full figured some, perhaps a little bit chubby after my son was born, but never heavy. I never had to work at losing weight or keeping weight off. I always had a nice curviness to me. Now, I feel like a big, jiggly, wiggly blob full of water and I even slosh when I walk. Literally, I can feel the fluid in my legs sloshing as I move one leg in front of the other.
That also means I’m not easy to pick up and toss over your shoulder anymore either, and with the back being twisted from the scoliosis, I don’t move fluidly or easily and I don’t twist or turn at all without excruciating pain and cracking. So you can imagine my horror when, not long ago, I decided to ride my electric wheelchair out the front door without bracing my legs, and the chair decided to get caught in the door frame and dump me hands and knees first onto the front porch, that I was not too happy about things. The falling part wasn’t so bad, I skinned one knee and bruised them both, but I was mostly okay (wounded pride is all). The problem was, there was nothing to pull up on, nothing to turn around and slide up on, no bars, nothing to grab a hold of… nothing. I sat on the cold concrete, unable to stand back up. My legs were not strong enough to push me up. My back was not strong enough to twist so I could slide back into the house.
I asked my son for a pillow, and he brought me one, and I curled up in a ball on the front porch and lay there, whining like a little baby (mostly pretending) and telling my family I had no intention of ever moving, I was just going to sleep on the porch.
Well, with some concern that the neighbors might see me and call an ambulance or something, we finally decided I needed to get up off the ground. Rather than risk everyone trying to pull me up and injuring me more or injuring them or them falling on me or anything else, we got the hydraulic lift from the garage and I sat on it and they pumped me up to a standing position–easy as can be.
However, do you know what that did for my self esteem? I kept thinking, “Man, I’m so fat that I have to be picked up by a lift…” but the reality is, it had nothing to do with my weight, but rather my safety and that of my family who was trying to help me. Still, my ego took a hit. It took such a big hit, I almost didn’t mention it here… but I did say mostly full disclosure, right? So embarrassing? Yeah. But I guess it won’t kill me.
FALLING AGAIN… YES, I’M FALLING AGAIN!
Well, yesterday, I fell again. This time, not so badly. It was more I was trying to get up from a seated position, and because of my back, I could not fully feel one of my legs. So when I pulled up, my leg bent, and I tried really hard to recover, but instead, I slowly, very slowly, kept going down, down, down… until my knee finally hit the floor softly. Fortunately, it wasn’t a ‘fall’, but it did end up with me on the ground again, at least, this time, inside on the rug. The problem was, remember earlier when I talked about using Lasix and needing to run to the bathroom with urgency? The reason I was getting up was to go pee! I need to be pee badly!
So here I was, on the floor, needing to pee, and completely unable to get up!
If finally managed, with the help of a pillow and the couch, to slide up on the couch and push myself up. I still rushed to the bathroom after and then my poor back killed me the rest of the evening… it was not fun, but I was proud that I was able to get up on my own, even if I did have to pay for it later.
FEAR OF DYING, ANXIETY
Okay, so this fear of sudden death thing is getting to me. I had an anesthesiologist get in my face in the hospital (that blog post is coming soon, ’cause she really pissed me off) and tell me all about how PEs can cause sudden death. Then the stuff on the internet says the same thing. Then my doc said I was lucky to be alive, and then… well, let’s just say a lot of things happened that caused me to realize just how lucky I really am to be alive, but then that gave me some anxiety about dying too. I mean, I’m not out of the woods yet. You read that one post that said tha 3t8% of people with my condition die in the first year after diagnosis. That’s scary stuff!
Then I read this book called Success With Heart Failure: Help and Hope for Those with Congestive Heart Failure, and that book has made me feel a whole lot better about some things. First, the author says clearly that it’s not unusual for people with heart failure to worry about dying, and that those newly diagnosed to not be able to sleep for fear they would not wake up. I started crying when I read that. That’s how I’ve been feeling. I might not have been fully aware of it, but it was there, behind everything, that fear that every morning I might not wake up and at least if I stayed awake, I would know if I died, rather than being asleep and not knowing, or some other silly nonsense as that…lol I know it sounds strange, but it’s how I felt. I didn’t think I would die as long as I stayed awake!
Just knowing from reading that in his book that this is normal to feel made a big difference to me. Maybe that’s why, in part, I’ve decided to share so openly about the awkward, embarassing things that come with being sick with a chronic, life-threatening illness… because my reading that this was normal made me feel less abnormal, and more than that, it made me feel better to know I’m not alone, not crazy, etc.
As many of you read on Facebook the other day, the central tunneled line they put in my chest fell out. It just… fell out. We ended up driving to the Island and getting it unstiched and removed. But the nurse there said that the tube was all there was, that it had fallen out completely, and only the small clip used (called a cuff) to hold it in place was left stitched to my skin, so she removed the stitches and the cuff and I was free to go, easy peasy. But we asked, “Are you sure the tube is all out, that it didn’t break or tear?” She said she contacted the doctor who performed the tunnel and that it was all one piece and it had come out on its own.
Well, we weren’t so sure and I left with this feeling that maybe they were leaving this tube inside of me. It didn’t seem long enough to have been where it’s supposed to have been to do the IV meds it did. So we thought they might be wrong, and they suggested they would do an x-ray, until they talked to the doc, then they didn’t do one. But I was still not so sure.
Well, the Steri-strips from the IVC filter came off last night, and tonight, I can feel with my fingers an inflamed large vein from my neck down to the hole that is where the tunnel line was. It’s hard to the touch, moveable and palpable, others can feel it, and there’s some bruising that’s appeared that is new. It’s dark bruising, but it’s new. Also, it is tender and a little swollen in that area, and I can’t move my arm forward without feeling that tenderness. So once again, I’m wondering if they left a small part of that line that broke off inside the vein and now it’s inflamed. I’m nervous about it. Maybe it’s just pain and tenderness from the procedure, but why would the pain get worse AFTER they removed it and it’s healed for a couple of days? Wouldn’t it have hurt before now if it was just normal healing? So I’m trying to decide whether we need to go to the doc tomorrow, go to the ER tonight, or wait until my next appointment or wait until home health is here on Wednesday… I don’t know.
I hate feeling like I’m crying wolf and running for every little thing, but I don’t want to miss something big either… it’s a fine line, and the pain isn’t bad, but this is a bit scary… what if there’s a tube stuck in my vein? They’d have to cut into me and retrieve it, and that scares me… been there once and it was a bad experience (again, will share that blog post as soon as I’m emotionally able to finish writing it).
That’s all for tonight. I’m tired and I’m going to take my nighttime meds and try to relax and go to bed at a halfway decent hour. I’m sorry it’s been so long between updates, but there are days I’m having trouble holding my head up, much less typing a blog post, then there are good days where I’m pushing to get caught up on life in general. It’s getting better… I plan to overcome this, but it’s hard. It’s very hard, and I don’t think I give myself enough credit sometimes for just how hard it is for me.
I love you all!
Love and stuff,
PS: How was your Thanksgiving? Mine was good, lots of food, my mom and her husband came, the kids did most of the heavy hitting cooking… good times, good food, good fun!