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TWAYGOH's Recent Blog Entries
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Saturday, October 15, 2011
Yeah, that would be the description of pretty much every aspect of my life that I have the capacity to monitor and manage. I have not been tracking, anything. Not my calories, not my exercise, or fluid intake, not my money. Nothing. And it shows. I'm fat and broke. A truly sad way to be.
What's got me thinking about it is a.) talking to a new guy, and I need to get cute and b.) Samir is getting rightly concerned about his weight, and I've been trying to teach him the basics of nutrition. He has no understanding. For example, he asked me, which is worse? A carb or a calorie? He has no clue. And he will not believe me when I tell him where his excess calories are. A lot of his problem is drinking his cals. He almost never drinks water, drinks almost exclusively juice and milk. He probably drank, while I was there for the evening, 700 Cal in milk alone.
But anyway, as I was going through his daily food intake, trying to calculate how much he's eating (which came out to be between 2100-2200 Cal, way more than even a 6'1" quadriplegic needs), it kind of got me back into the tracking mindset. I have not tracked in a long time, have been eating very unhealthily, and not exercising beyond work. Not good combo. And it definitely shows. I'm heavier now than I have been since this time last year. I just hit a threshold where everytime I look at myself, all I can think is "gross."
The schedule has also changed such that Samir has requested that I not stay the night anymore to help out, unless absolutely necessary. He says I'm welcome to visit anytime, but that it's too much stress on me to have a full time job and to be expected to come over and help him out too. Which is true. And it was definitely impacting our friendship. I was so stressed, and so tired, that I would snap over the slightest things he said or did, and we'd fight almost everyday. I felt trapped, like I couldn't ever be free to go see friends or family ever, since I never had a night off.
And I guess it's been good. I've definitely been spending a lot more time with my family. Went and saw Todd, since we're still friends. Took a couple days away required for work where his dad stepped in to deal with the morning biological needs, which I otherwise still care for every morning when I'm not out of town.
But I have not been using my time wisely. I've been watching a LOT of tv, and sitting on my butt. I've been sleeping, which is worthy, but not enough to catch up, cuz I'm reading stupid books too, or watching more tv. I wasted HOURS today, just chilling, not doing anything.
I definitely could've fit some exercise in today. But I didn't. I guess to get started though, I will start tracking food intake, which now I have time for again. I know I've been eating badly, but I haven't been marking the numbers down, so that knowledge has not been very impactful. I'm pretty sure it's going to be, starting today.
So, I'm off to track now. And then some sleep I think.
Friday, October 07, 2011
I took a break in the afternoon at work today. Am on it now. But went back and reviewed some of my old blogs.
It's amazing how much time I used to waste, in reflection. My life is in perpetual flux as I try and balance a heavy work load and taking care of Samir. He's moved out on his own, and he's set things up that in a pinch he can survive mostly on his own with his nurses if he has to. He gets 9.4 hours of care from In Home Supportive Services, but obviously that means he still requires a lot of care outside of that. They can take care of most of his phyiscal needs in that time, and he gets his phone calls and the like done, but he still needs some biological care first thing in the morning (which he doesn't have enough hours to cover) and there's also all the extras in life that make life worth living, that he needs help with in off hours.
We went through a strained time when I tried to be everything he needed in his non-help hours, but it was too much. I work too much, I wasn't sleeping enough, and I wasn't willing to give up all of my extra life things for him, like time with my family, or dating, or what have you. We had tons of discussions about how to fix the situation, and eventually settled on what we have now. It's not ideal, but it gets me a lot more sleep and at least a couple hours to myself a night on a workday. Previously I was getting 2-4 hours of sleep a night, and now I'm up to about 6, which does it for me. It makes me laugh to look back at one of my blogs, being all mopey because I only got 7 hours of sleep. It's interesting to figure out how far you can push yourself, and where your breaking point is. I reached it, but now I'm balanced at max capacity I think, where I can serve myself, and serve him, and get my work done, though there are still a lot of things that I don't get to that I'd like to.
I still don't spend enough time with my family, but I'm spending more time, and talking more on the phone. That was a big thing. I hadn't been spending enough time with my cats, but now they get time with me while I sleep, which seems to be enough for them. Haha, I slept on my belly last night with one cat purched in the middle of my back, and the other sprawled over my butt. They seemed content and we all slept well.
But, I still haven't picked up exercise, and my diet has been complete and utter crap. Like, complete and utter crap. All I've eaten today is soda and potato chips and a piece of pizza. This is not abnormal for me these days. I don't know why. I could definitely do better. If nothing else Samir always has good food at his house and he says I'm free to eat from it. But I don't. This is the first week that we've tried the new schedule that is allowing me more time. As I settle into it, i hope to be able to find time to exercise. But, sleep is still massively important to me, especially on as little as I usually get, and taking into account the bad nights that I still only get a 2-3 hours, I'm hesitant yet to give ANY of my free time to exercise.
But, I'm definitely regaining weight. I haven't weighed myself, but I can see it around my waist. Not pretty. And how am I supposed to find a boy with this pudge growing around my belly? Everyone always says, "oh honey, wait for the right one, he'll love you for you." Pshaw. That may be true, but he has to notice you first, see you, and that's a lot easier if you have a form that draws the masculine eye. Blah. It's not horrible yet, but if things continue as they are, it will be.
I think I can manage a lot of that with diet. Which means good food really needs to be my focus. But I hope also, somewhere, I can fit in exercise as well. I need to be strong for myself, and for my mom who is also going through a tough time managing her habits. It doesn't help when I draw her down the path to perdition with the temptation of splitting a pastrami sandwich (though they're so good!)
I wish I could take time off in the middle of the day. I definitely get these strong energetic urges where I just want to get off my butt and move, but can't because I'm at work. And it's gone by the time work is done and have to go home to sleep. Blha blah blah.
This is not the right attitude to have about all this. I've noticed when I get really tired I think only in terms of problems, and almost never in terms of solutions. But then, in better times, I have tried to think in terms of solutions of care of myself, but have come up with nothing. I just don't have enough time. He's not like a toddler that you can put in a jogging stroller and go. He can be left alone for a couple hours, but again, its' different than with say a kid because he just has to lay there, not being able to entertain or apply himself at all. He will be getting tools through State Rehab to get him back to school, and that will open up his activities, but until that point, everything has to be done for him.
Perhaps it's just a waiting game, until a) he heals more and b) he gets the right tools. He keeps making steps in the right direction. As things progress, he'll need me less and less. And I'll have more time for myself. The question is, do I push myself even farther, and work on my health now, or do I wait, try to maintain, and focus on getting enough rest to meet the rest of my commitments? I don't know. We'l lsee how it goes, how Ii ffeel in the moment, I suppose.
In any case, no time tonight I don't think. Going to go shopping for him, then dinner with the fams. I usually try to be there with him in the gap between caregivers in the evening (7:30 pm to 10:30 pm he's on his own). I could exercise after 10:30, but that gives me very limited time to sleep before I have to be up and ready to go over there at 6:30 am to deal with his biological needs.
Tired just thinking about it. Think I'm going through a sugar crash from all this soda. Gonna close this out now. No solutions yet, just rambling I guess.
Wednesday, June 15, 2011
So, got side tracked with the Samir situation last blog. This one is about me.
Obviously, if you read my last blog, you know that life has been seriously impacted by Samir coming home. Which is not unexpected. But things are getting into enough of a routine with him, that I could be fitting in time to execise, if it wasn't for my work, which is heinously hardcore right now. Way too many hours, not enough time. Last Tuesday I worked a 22 hour day, and I had to work Saturday as well on a different project. I did have Thursday and Friday "off" but ended up working at home, trying to catch up with the paperwork side of things.
But, I should be able to exercise on the weekends at least. That's not much, but it's better than nothing. Sadly, Todd and I broke up. Which I'm honestly not too broken up about. Things were just getting worn. I'm more peeved that now I have to start looking again. I just don't like dating. But, I have a couple other prospects, so we'll see if they pan out. The point is, not driving 1.5 hours to the south every weekend to see him, so that'll save time.
My weight has not been raising too much, despite the lack of exercise. It could be that because I'm so strapped for time I just don't eat much these days. Of course, what I do eat is crap, so I'm still surprised. We'll see. I just got home, at about 8:30. I have to leave for work at 7:00. It's not too bad, ifI can get to sleep tonight. I'm tired. Worn out. Maybe if I start exercising again I'll have more energy.
We'll see. Probably not tonight in any case.
Wednesday, June 15, 2011
I guess it's been almost three months since I last blogged. Unfortunately, personal fitness has not been a big priority for me these days. Luckily I seem to be at a comfortable point for my body, so though I've been fluctuating between the same three pounds, (156-159) I haven't as of yet regained much weight.
A lot has happened in the last three months. One of the most impactful is that Samir came home. He moved in with his father. It didn't work. They've always had a strained relationship, and the pressure that the other members of his family were putting on him because of the upset to their lives made things miserable for everybody. It ended up that I was going over to take care of him every evening, usually until about 1:30 in the morning, getting up to go to work at 7:30, coming home to take care of my animals, maybe visit my grams a bit, then doing it again. Basically, it got to the point where the family had pretty much cut Samir off, and weren't providing for his care at all, so it was just his day nurse and myself. The reason that I wanted him to move back in with his family was so that we could share responsibility, because there's a lot of work that goes into his care.
But their willingness to be available was not satisfactory. They helped with the necessary body stuff, at first, but were perpetually groaning about it, which made Samir feel even worse about the whole situation. It's not like he chose it, and he already felt like an obligation without them constantly harping about the unpleasantness of some of the required tasks. The more they slacked or moaned about it, the more I stepped up. And anything beyond the basic necessary functions was a definite no-no. I remember one time his dad and his brother both telling me I shouldn't baby him by putting his fleece on him (as dressing him is something of a task). I should just pile on blankets. But I DID put his fleece on him, and three blankets, and his temperature was still 95 degrees for three hours. The spinal injury does that, messes with internal temp control. And 95 degrees is the start of hypothermia. Putting his fleece was NOT babying him.
Anyway, it got to the point where they had pretty much shut him away. They didn't invite him out to sit with them anymore, didn't ask if he wanted anything when they went out to eat, and eventually stopped poking their head in to even say goodnight or goodbye. I remember Samir at one point talking with his dad (he'd been in the kitchen eating). He said goodnight, and "I love you" to him, and got no response whatsoever. Ugh. I'm getting pissed off again just thinking about it. This all came about within a month of him moving home. Way to go team.
Basically it became intolerable. I couldn't even count on his physical health being cared for anymore, let alone his emotional. He's supposed to have catheterization every 4 hours. If I wasn't there to do it in the night, the last time it happened was about 9 o'clock when his nurse left, and then again at 7 when his dad came in to do it. That's way too long and poses a serious threat to him if urine backs up into his kidneys. At least one day his dad, who had been at least taking care of catheterization and meds in the morning, didn't come in. I had to do it then, which, as I hadn't planned on it, it being out of the normal schedule, made me late to work by 45 minutes.
The point is, I was already giving all my time to him with no help to speak of. So I ended up moving him in with me, where at least I can take care of my responsibilities to my home as well. He has a live-in nurse, and we've recently acquired a back-up nurse to give her two full days off so she doesn't burn out. We'll see how it goes.
In more practical news, there hasn't been much physical improvement, other than his breathing is doing better. When he first came home he was getting a lot of secretions building up in his throat from the tracheotomy. This required either cough assist (someone pressing hard on his stomach to help him cough stuff up cuz his diaphram strength isn't great), or suctioning it out directly. But, I personally haven't had to suction him more than once since he came home to my house, whereas before it was everynight about. His primary care physician here talked to the doctor in LA that gave him the trache. He says now, despite saying it would be in for probably 6 months originally, that it should probably stay in for life, that Samir's "quality of life will be so much better." I don't know how that would be. The trache is constantly paining him and is susceptible to infections (despite constant cleanings). If you bump it it jars his whole body. And I just don't know how that doctor can make that call. He hasn't seen Samir in over a month, nor has he spoken to him about how he's doing, just to his primary care physician. He hasn't seen his health, or heard him yell across the house (which I have), which exhibits definite increase in lung strength. Samir was seriously bummed to hear that the trache shouldn't come out, but honestly, I just think that it's not a justifiable assessment. Even the LA doctor said that other doctor's would disagree, which means to me that his answer is not the end-all be-all. We'll see. Unfortunately Samir can't get in to see the local ear-nose-and-throat guy for three months. There's only one in Del Norte and Humboldt counties, and he's obviously booked. I wonder if he's trying to put a medi-cal patient off too. I know the urologist in Del Norte, where we live, won't take medi-cal at all.
Anyway, things are working, if not satisfactorily. Regardless of whether he's living with me, or on his own, things will have to be worked out. There's no other option, as odds are very good he'll be like this for life, though I'm still hopeful for him getting some arm movement back. I still get these fits of being so pissed off about it I can't breathe. I hate that my boy is so physically broken, and that his life has become so hard. I hate that every moment I spend with him almost is me caretaking him, and there's not time to just be friends and hang out. I hate that he recognizes that as well, and it makes him sad that his life is now so utterly focused on just keeping his body healthy that getting anything else done is absurdly difficult. I hate it. And I know that these blogs are supposed to at least touch on our physical journey. And I had planned on this one doing so, because obviously having him in my home and caring for him is impacting my personal goals. But I got sidetracked. I guess I'll write another blog, and focus it on my journey instead.
Friday, March 25, 2011
Samir has a voice :)
Due to the trache he's had in his throat, helping him with his breathing and such, he hasn't had a voice because it blocks his vocal chords. I'm not sure why he needs it anymore, because he's breathing on his own, but...whatever. At this point he's got a sort of valve, or so they call it, that allows air through the vocal chords.
So, I get a couple of picture messages from his dad, showing that he's eating solid food, which is apparently a new thing as of today. And then I get a call from his dad. I say, "Hey Jim, how's it going?"
He says "Hey, hold on just a sec."
Blam!
Soft, and not in his normal voice, but with his intonation, I hear "Hello?"
Totally made my day. Will probably have made my week. Makes me want to be down there even more than before, but makes me happy nonetheless.
Mostly he wanted to know how things were going up here. All I had to report was that I was working long days and was tired and that I wanted to be down there. Apparently they're doing a lot of "stretching" as he put it. Not much else they can do at this point he says, I guess unless he actually gets sensation down into his arm? He's only been at the rehab center for three days now. I'm anxious. I really hope that things improve.
And apparently he's been assuming that he's going to move back in with me. He broached this by asking me if it was okay if he bought a different bed for the back room, since that water bed is not going to do. He'd mentioned moving in to my house before, to his GF Victoria. That was back in the early days, when he was a lot more fragile. At that time Victoria said, "Well, I think the plan for now is to move you back into your dad's, which is closer to the hospital." Which has been the plan. He seemed to accept it at that time, but now he broaches it again.
I love him, but...I don't know about that. My life will be drastically altered if I let him stay with me. Obviously I still wouldn't be responsible for his primary care, because he's going to need care 24/7. But I WOULD have to change my life around. As things stand I'm hardly home. I go to work, often for long hours, I come back and spend some time with grams, or go exercise, or go see Todd, or maybe go and do Roller Derby, or go to Church on Sundays, or whatever. If he lives with me, I think I would often feel the need to be at home, to give him the company of a constant friend, which is seriously going to impact the rest of my life. If I have Todd over, probably means I abandon Samir to his own devices, and does that leave me feeling guilty? And what would Todd, or any other guy I get involved with, think of the situation? Would definitely limit our time together. There's also likely physical care that I'd have to give him. This last doesn't really bother me, so long as it's not solely on my own responsibility, and it's something I was prepared to do anyway, but it's a change.
And what about children someday? Can I take care of children, and Samir? What if I never marry? I'm perfectly content to adopt, but I can't be a single mom and take care of Samir. I don't know if he realizes what he asks. But I don't want him to think that he's not important to me, because, obviously, he is very much so. This is a subject that has to be approached very carefully. If Victoria had her own place, he'd likely have asked her, but she's honestly still immature. A sweetheart, and I like her, but she's 19, unemployed, without a car, without a high school diploma, though she's almost there, and she smokes weed 4 or 5 times a day, seriously limiting her ambition.
I'm going to have to pray that I make the right decision on this. My logical inclination is to say no, that's not going to work. That's the logical side of me thinking things through like I know I should. On a fundamental level, in my heart and first instinct of my mind, I have no issue with him moving back in. Which is totally illogical. *sigh*
In any case, I need to go to bed. I did not exercise today, and it's now past 10:30. Perhaps if I go to bed now, I can do a workout in the morning. Psh. Like that's going to happen. But in any case, going to try and get some sleep.
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Member Comments About This Blog Post:
But I agree with Vamanos I think that a lets cross that bridge when it gets here approach would be best for your stress and his. Maybe away from him you can talk to his family about your concerns for now and the future. Good luck 
