{"id":581,"date":"2011-11-29T01:41:14","date_gmt":"2011-11-29T01:41:14","guid":{"rendered":"http:\/\/michelledevon.com\/?p=581"},"modified":"2021-01-03T01:42:05","modified_gmt":"2021-01-03T01:42:05","slug":"biting-my-tongue","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/11\/29\/biting-my-tongue\/","title":{"rendered":"Biting My Tongue"},"content":{"rendered":"

Okay, so you all probably know what \u2018biting my tongue\u2019 means\u2026 usually, it means that you\u2019re trying not to say something that you know might not be taken well by someone else, or else, someone has upset you and you\u2019re biting your tongue so you don\u2019t snap back at them. Well, both of these are probably true for me at some point or another through this health ordeal I\u2019m going through, but in this instance, I intend to talk about biting my tongue quite literally.<\/p>\n

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\u2019s 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.<\/span><\/p>\n

Death and life and health are all messy things. There is no dignified way to die and there\u2019s 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\u2019s 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\u2019m on that side note, just exactly who are the Victoria\u2019s Secrets\u2019 commercials trying to target? The commercials are most definitely made for men, but men don\u2019t buy that kind of underwear, even as gifts, for their women. And the women really aren\u2019t going to be foolish enough to think that they will look like that if they buy the undies\u2026 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.<\/p>\n

Now that I\u2019ve digressed, let\u2019s move on to the ugly awkward stuff\u2026.<\/p>\n

BITING MY TONGUE<\/p>\n

I don\u2019t know what\u2019s causing it, but the past month or two, I\u2019ve 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\u2019ve thrust my jaw out and my tongue is pushed onto either side of my teeth, and I\u2019m 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\u2019m awake too. I\u2019m not sure if it\u2019s because I\u2019m thrusting my jaw out some because I\u2019m wearing the oxygen cannula or if it\u2019s 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\u2019ve wondered if there\u2019s a sleep disorder going on here, that causes mini-seizure that are causing me to bite my tongue at night. I\u2019ve got some jerkiness in my hands recently too, so it\u2019s possible. Doc is sure I have some sort of sleep disorder, and I\u2019ll be tested for that soon.<\/p>\n

Because of the existing blood clots in my lungs, my oxygen is still low\u2013that is, my perfusion\u2013and 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\u2019t know about that for sure, but we can test for other things, so it looks like I\u2019m 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!<\/p>\n

INCONTINENCE<\/p>\n

Here\u2019s the embarrassing part, but like I said, I promised to be honest with everyone, right? Well, since I\u2019ve been home from the hospital, I\u2019ve been on very high doses of Lasix (water pills, diuretics). I\u2019m on 60mg, three times per day, but at the same time, I\u2019m supposed to limit my fluid intake to two quarts of liquid per day, maximum, while keeping my sodium below 2 grams per day. I\u2019m 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\u2019ve been doing okay with the salt. Everything tastes so much sweeter without salt, which isn\u2019t good for me, since I\u2019m a salt nut. I love salt, and I\u2019m not a sweets eater, but I\u2019m adjusting to it. Mrs. Dash is my friend.<\/p>\n

So while I\u2019m 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\u2019t really \u2018rush\u2019 much of anywhere without suffering. So I finally make it to the bathroom, sit down to pee, think that I\u2019m done, then stand up and gush a whole \u2018nother round of peeing! It\u2019s been a real pain, but there\u2019s no urgency or feeling that I still NEED to pee or anything. It\u2019s been embarrassing, even though no one else has seen it or anything, but it makes me feel\u2026 I don\u2019t know. You know what I mean? So yeah, sometimes being \u2018sick\u2019 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\u2019t take away the shame feeling of it for me. I know it\u2019s silly to feel that way, but I\u2019ve lost so much.. peeing on my leg isn\u2019t something I want to add to the things I\u2019ve gained, yanno?<\/p>\n

HELP! \u201cI\u2019ve fallen and I can\u2019t get up\u2026\u201d (This is a trademarked phrase, so please don\u2019t sue me\u2026I intend to be humorous here!)<\/p>\n

Okay, full disclosure. I\u2019ve gained a bunch of weight while being sick. I\u2019ve done nothing to hide that, in that I\u2019ve told you guys I probably have about 100 pounds of water weight on me, so you can venture to guess I\u2019m at least 100 pounds over what might be an ideal weight for me. I\u2019m tall, 5\u201910\u201d, so I carry it very well, but that means I\u2019m still a pretty big girl right now. I hate that. I\u2019ve 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.<\/p>\n

That also means I\u2019m not easy to pick up and toss over your shoulder anymore either, and with the back being twisted from the scoliosis, I don\u2019t move fluidly or easily and I don\u2019t 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\u2019t 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\u2026 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.<\/p>\n

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.<\/p>\n

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\u2013easy as can be.<\/p>\n

However, do you know what that did for my self esteem? I kept thinking, \u201cMan, I\u2019m so fat that I have to be picked up by a lift\u2026\u201d 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\u2019t mention it here\u2026 but I did say mostly full disclosure, right? So embarrassing? Yeah. But I guess it won\u2019t kill me.<\/p>\n

FALLING AGAIN\u2026 YES, I\u2019M FALLING AGAIN!<\/p>\n

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\u2026 until my knee finally hit the floor softly. Fortunately, it wasn\u2019t a \u2018fall\u2019, 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!<\/p>\n

So here I was, on the floor, needing to pee, and completely unable to get up!<\/p>\n

Shaking head\u2026<\/p>\n

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\u2026 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.<\/p>\n

FEAR OF DYING, ANXIETY<\/p>\n

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, \u2019cause she really pissed me off)\u00a0 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\u2026 well, let\u2019s 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\u2019m 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\u2019s scary stuff!<\/p>\n

Then I read this book called\u00a0Success With Heart Failure: Help and Hope for Those with Congestive Heart Failure<\/a>\"\", and that book has made me feel a whole lot better about some things. First, the author says clearly that it\u2019s 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\u2019s how I\u2019ve 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\u2026lol I know it sounds strange, but it\u2019s how I felt. I didn\u2019t think I would die as long as I stayed awake!<\/p>\n

Just knowing from reading that in his book that this is normal to feel made a big difference to me. Maybe that\u2019s why, in part, I\u2019ve decided to share so openly about the awkward, embarassing things that come with being sick with a chronic, life-threatening illness\u2026 because my reading that this was normal made me feel less abnormal, and more than that, it made me feel better to know I\u2019m not alone, not crazy, etc.<\/p>\n

OTHER ISSUES<\/p>\n

As many of you read on Facebook the other day, the central tunneled line they put in my chest fell out. It just\u2026 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, \u201cAre you sure the tube is all out, that it didn\u2019t break or tear?\u201d 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.<\/p>\n

Well, we weren\u2019t so sure and I left with this feeling that maybe they were leaving this tube inside of me. It didn\u2019t seem long enough to have been where it\u2019s 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\u2019t do one. But I was still not so sure.<\/p>\n

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\u2019s hard to the touch, moveable and palpable, others can feel it, and there\u2019s some bruising that\u2019s appeared that is new. It\u2019s dark bruising, but it\u2019s new. Also, it is tender and a little swollen in that area, and I can\u2019t move my arm forward without feeling that tenderness. So once again, I\u2019m wondering if they left a small part of that line that broke off inside the vein and now it\u2019s inflamed. I\u2019m nervous about it. Maybe it\u2019s just pain and tenderness from the procedure, but why would the pain get worse AFTER they removed it and it\u2019s healed for a couple of days? Wouldn\u2019t it have hurt before now if it was just normal healing? So I\u2019m 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\u2026 I don\u2019t know.<\/p>\n

I hate feeling like I\u2019m crying wolf and running for every little thing, but I don\u2019t want to miss something big either\u2026 it\u2019s a fine line, and the pain isn\u2019t bad, but this is a bit scary\u2026 what if there\u2019s a tube stuck in my vein? They\u2019d have to cut into me and retrieve it, and that scares me\u2026 been there once and it was a bad experience (again, will share that blog post as soon as I\u2019m emotionally able to finish writing it).<\/p>\n

Anyway\u2026<\/p>\n

That\u2019s all for tonight. I\u2019m tired and I\u2019m going to take my nighttime meds and try to relax and go to bed at a halfway decent hour. I\u2019m sorry it\u2019s been so long between updates, but there are days I\u2019m having trouble holding my head up, much less typing a blog post, then there are good days where I\u2019m pushing to get caught up on life in general. It\u2019s getting better\u2026 I plan to overcome this, but it\u2019s hard. It\u2019s very hard, and I don\u2019t think I give myself enough credit sometimes for just how hard it is for me.<\/p>\n

I love you all!<\/p>\n

Love and stuff,
\nMichy<\/p>\n

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\u2026 good times, good food, good fun!<\/p>\n","protected":false},"excerpt":{"rendered":"

Okay, so you all probably know what \u2018biting my tongue\u2019 means\u2026 usually, it means that you\u2019re trying not to say something that you know might not be taken well by someone else, or else, someone has upset you and you\u2019re biting your tongue so you don\u2019t snap back at them. 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