By wendy, on October 24th, 2012%
 MARTA Bus Stop (Photo credit: Wikipedia) We’ve been in the new apartment for almost 4 weeks now, and I’ve discovered something important. . . It’s time to move on, not just in our living arrangements, but at work, too.
I didn’t want to change stores because I really like most of the people I work with (and the others I can deal with,) but staying at this store is going to be totally unmanageable. To be at work by 4PM, I have to leave the apartment by 1PM to make the connection to the bus at the other end. Then I spend an hour and a half to 2 hours and 15 minutes getting home, depending on whether it’s a weeknight or a weekend (and if the bus on either end is early or late, I’m screwed because I miss my connection.) Basically, I’m getting paid for 5.5 hours, and spending 11 hours to get it, and it’s playing hell with my fibromyalgia (not to mention the effect on my blood sugar from not being able to eat when I should, or what I should.) I just can’t handle 4.5 to 5.5 hours a day on public transit, so something is gonna have to change, soon.
Working with a chronic pain condition is difficult enough without this . . .
If you also figure in the physical costs (increased pain levels and flaring, fatigue that makes it possible to fall asleep standing up leaning against a post, fibrofog from hell, and a diet heavily weighted toward peanut butter sandwiches;) add the extra financial costs (multiple added bus trips because I can no longer just grab groceries before I leave work, buying cigarettes because I don’t have the time or energy to make them, and buying convenience foods because I don’t have time to cook;) then add in the money I’m losing because I don’t have time to write (anywhere from $150 a month and up;) it’s actually costing me more than I’m making to continue working at that store.
Luckily, I work for a major chain, and there are 12 stores within an hour’s bus ride of the apartment, so hopefully I can transfer to one of them (SOON!) If I’m really lucky, I’ll manage to get into one of the 3 that are less than 30 minutes away, so cross your fingers. (Tomorrow’s project is contacting all of the stores and trying to set up a time I can talk to the deli manager if they aren’t there when I call.)
Other than that, I haven’t really found any major difficulties since we moved. (There’s a noisy dog upstairs, but I’m not here enough for it to be that big a deal for me right now.) I’m loving the apartment, and we’re gradually getting everything organized and arranged. There are still some boxes that haven’t been emptied, but they’re all either in the bedroom, or stuffed in a closet because the things in them aren’t used often enough for them to be emptied. I’m even finding all kinds of stuff I haven’t seen in years because it sat in boxes under the bed from the time we moved to the cottage until we moved here.
I will admit, I miss “the boys” and Soxkitty, but it’s not like I can’t go visit, message them on FB, or call or text them whenever; and the advantages of the apartment over the cottage are worth it (mostly.)
Even better, hubby’s doing much better now. He’s seeing a different doc for his ADD, and this one a) has ADD herself, and b) actually recommended vitamin D instead of an antidepressant. I’ve been giving him vitamin D for the last few weeks, but she recommended a higher dose than I was comfortable with giving him without a doctor’s advice, and it’s really making a difference.
He’s also finding some folks to hang out with, which helps even more since it gets him out of the house. He even traded a second guitar someone gave him for guitar lessons. I hear a lot of growling and grumbling during practice sessions when he’s not getting the result he wants, but he doesn’t give up, he just b*tchs and keeps going.
Things have improved so much that I’ve even come home to find the dishes done and the living room cleaned up, and he’s volunteered to take over keeping the bathroom clean if I’ll buy some bathroom cleaner instead of making him use my homemade stuff. I’m thinking it’s worth the trade-off of a few extra dollars and the small amount of added toxins, since cleaning the bathroom tends to put me in bed for hours of recovery. I’m gonna have to think about this one – I’m not sure how comfortable I am with the idea of using a commercial cleaner again.
All in all, the move has been a very positive thing for both of us, and once I get the commute under control, I think I’m going to be very happy with the changes . . .
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By wendy, on July 3rd, 2012%
By Wendy Burnett
I wish I’d had this book years ago! When my husband and I met, I was in a period of remission and low stress, and even though I did my best to explain what it would be like if (when) that ended, it was still a shock for him when the flares started again.
I didn’t have the words (or the knowledge) to be able to give him a picture of what the partner of someone who is chronically ill goes through. This book is unique, because it’s the only one I’ve read that is co-written by the caregiving spouse (and even better, that spouse is the husband. Although that situation is actually pretty common, it’s much less common to find a resource that provides the perspective of the male caregiver.) It’s a great resource for BOTH partners; because it gives the patient insight into their partner/caregiver’s experience; as well as providing support, validation, and acceptance for the caregiving spouse.
A Husband, A Wife, & An Illness: Living Life Beyond Chronic Illness
by Dr. William July and Jamey Lacy July is a must have resource for any couple facing a debilitating chronic illness. Not just a “feel good” book, it’s full of practical tips and advice for both the caregiving spouse and the ill partner. Part 1 is written by William, and is full of chapters like: Continue reading A Husband, A Wife, & An Illness – Review »
By wendy, on May 26th, 2012%
By Wendy Burnett
The terrors of living with chronic non-cancer pain in this climate of opiophobia and prescription drug crackdowns are horrible and constant. Patients are never sure when their doctor will reduce the amount of pain medications he’s willing to prescribe, or when the DEA will come for a doctor who is willing to prescribe adequate amounts of medication and leave them scrambling to avoid the torture of having no medication at all.
I understand the torment of living with chronic pain and having no medication available to ease it; the hopelessness of knowing the pain will ALWAYS be there; and the times when the agony is so bad, so totally unbearable, that you desperately search for a way to kill yourself that won’t torture the people you love with guilt and regret. I’ve lived through all of those things, and much more.
I also understand the misery of having an addict in the family; the fear of the call telling you they’ve overdosed, the belongings that disappear into the local pawnshops to pay for drugs, the mood changes and rages. I’ve been there, I’ve lived with addicts and violent alcoholics; and I know what it’s like. My heart breaks for all the people who are still in that situation, who are desperate to keep their loved one from being able to get the drug that’s causing them so much pain, who think that if the drug was just not available, things would be okay again. Continue reading Opiophobia, Restrictive Laws, and the Torture of Chronic Pain Patients »
By wendy, on February 29th, 2012%
By Wendy Burnett
Have you lost friends because of your chronic physical or mental illness? I have. Actually, I’ve lost quite a few friends since I got sick, for a lot of different reasons, but the only ones I really regret are the ones I’ve lost to chronic illness burnout. Those, I could have prevented, if I’d known back then what I know now.
 Chronic Disease (Photo credit: tamahaji) I used to have a very small group of friends that I talked to, and everyone else got the “everything’s fine” act. There’s not anything wrong with giving people the act, if they’re only acquaintances or coworkers, and they don’t NEED to know what’s going on with you, the problem actually comes in with the people you really talk to. We all need someone to talk to when we’re having a high pain day, or the depression is so bad that all we want to do is curl up and die, but loading it all on just a few close friends can be a bad thing for them and for you.
Whether you have a physical illness, a mental illness, or some combination; if you only share your pain and negative feelings with a few people, there’s a danger that it will be too much for them. Overloading your support network can cause them to have to pull back so that they can take care of themselves, especially if that is all you ever talk to them about. This is not selfishness on their part, it’s self protection. You HAVE to deal with your chronic illness every day, but your friends can get burned out if you lean on them too heavily. (We can get burned out ourselves, too, but it belongs to us, and it’s a lot harder to step back from when it’s yours.)
Don’t freak out!
I’m not saying you can’t tell your friends how you feel, or that you’re having a hard time. What I AM saying is don’t depend only on one or two close friends for all of your emotional support. Everyone has their own crap to deal with, and sometimes they can’t deal with your stuff too; Continue reading How to Avoid Burning Out Your Support Network »
By wendy, on November 30th, 2011%
By Wendy Burnett
Do you do everything you can to ease your fibro symptoms, and wonder why you don’t feel better? If you’re being exposed to the following substances, you may be undoing all the good you’re doing with your diet, medications and alternative treatments.
- Aluminum Hydroxide – An adjuvant added to vaccines to increase antibody production, aluminum hydroxide is a neurotoxin that has been connected to Gulf War Syndrome; as well as cognitive dysfunctions and motor neuron disease, which is virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) except for the age of onset. It has also been linked to the destruction of, and damage to, motor neurons; which are responsible for telling your muscles to contract or relax, thus controlling movement; as well as for receiving sensations from the body.
- Aspartame – Aspartame (Nutra-Sweet) has been linked to headaches, including migraine; higher pain levels, cancer, brain tumors, tinnitus (ringing or buzzing sound in the ears,) noise sensitivity; decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision; decreased night vision; pain in one or both eyes; dry eyes; dizziness and unsteadiness; confusion and memory loss; severe drowsiness and sleepiness; Continue reading 8 Things You Didn’t Know Would Make Fibromyalgia Worse »
By wendy, on November 26th, 2011%
 Image by librarygrrrl via Flickr By Wendy Burnett
Day 26 – The prompt for today’s Health Activist Writer’s Month Challenge Prompts (#HAWMC) is: “I still remember… Free write a post that starts with the line “I still remember…””
I decided that since this one is so general, I’d narrow things down a bit to keep it relevant to chronic illness. Since I mostly focus on my fibromyalgia, or chronic illness and chronic pain in general, I thought I’d put the focus on one of my other issues this time, so this post is going to focus on my migraines.
I still remember . . . the worst migraine I ever had. It’s something I’ll probably never forget. (My hubby probably won’t either, it scared the shit out of him.) I woke up at my usual time and called in to work to remind my boss that I had a doctor’s appointment that day. My head was aching a bit and I felt kind of sick, but I went through my usual routine of showering and washing my hair anyway, feeling worse and worse as I did.
By the time I got done, I felt bad enough to lay down until time to dress, so I curled up with my sleep mask, until suddenly I was violently nauseous. I barely made it to the bathroom before I lost it (thank goodness there was a throw rug I could just roll up to toss into the washer later,) and I was in there so long, making such awful noises, that hubby actually came to check on me.
It got worse from there, because I’m a stubborn bitch, and was determined I wasn’t going to miss an appointment with the rheumatologist that was always booked solid for 6 months ahead.
Hubby had to help me dress, with several interruptions to run worship the porcelain goddess, and eventually we emptied a small trashcan that I could just carry around with me. By this time, my head felt like it was going to explode, even with all the shades drawn and the lights off I could barely stand to open my eyes, and every time hubby whispered a question I nearly screamed from the pain.
Needless to say, the 45 minute drive to the doctor’s office, hugging my trashcan all the way, was a nightmare for both of us. Every bump in the road felt like someone was jabbing a railroad spike through my head, every time I had to open my eyes the light felt like razor blades slicing through my eyeballs, and every sound was like sharp knives inserted into my brain. Poor hubby wasn’t that much better off, either. He has a weak stomach, so every time I heaved, he gagged and choked.
I must admit though, it’s the fastest I’ve ever been taken to the back . . . the second time they had to rush to unlock the door so I could get to the bathroom before I shared my technicolor yawns with everyone in the waiting room, they stuck me in an exam room. I guess they wanted to get me seen and out of there before they had to clean up after me, because the nurse went ahead and started the intake stuff, mostly while I was hanging over their trashcan.
By that point, I couldn’t stop heaving, and within 5 minutes the nurse had rushed out the door and was back with a needle full of something. She kept waiting for the heaves to stop long enough for her to give me the shot, but it just wasn’t happening, so finally she had to poke me while I had my head stuck in the trashcan. (I have NEVER been so glad to be jabbed with a needle in all my life. LOL)
I don’t know what was in that syringe, but it was some damn good stuff. It was only about a minute before the vomiting stopped, and by the time I rinsed my mouth out I was so groggy that hubby had to pick me up and put me on the exam table (I don’t actually remember that part, the next thing I remember is waking up about 2 hours later.) Hubby said later that the nurse had been in there checking on me about every 15 minutes; and as soon as they found out I was awake the doctor came in, we finished the appointment, and I was GONE. (With scripts for Phenergan, Maxalt, and some narcotic pain-reliever in addition to my usual double handful of stuff.)
I’ve had other bad migraines, including ones that lasted for days of wishing someone would chop my head off for me, and others where I threw up several times. I’ve had lots of migraines where I wished I could just die and get it over with, but that’s the only one that ever made me wonder if it was actually possible to die of a migraine.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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By wendy, on November 26th, 2011%
By Wendy Burnett
Day 24: Today’s Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?”
 FibroFighter's secret weapons When I first saw this prompt, it freaked me out a little . . . Me, create a mascot? Oh no, I couldn’t do that. After all, I’m not that creative, am I? Well, maybe I am, because the idea kept sort of sloshing about in the mush that is my brain; bumping into all these other ideas about fibro, and coping, and pain. Some of the ideas stuck together, a picture started forming in my head, and suddenly there she was. FibroFighter, the fibromyalgia mascot, waving a hot pad and shouting “I can do it!”
FibroFighter is just as much a superhero as a mascot though. She has to be to do even part of the things that a “normal” (read “not sick”) person does every day while coping with constant pain, exhaustion so deep it feels like it pins her to the bed, and fibrofog that turns her brain to mush.
FibroFighter’s “secret weapons:” Continue reading Introducing . . . FibroFighter! the Fibromyalgia Mascot/Superhero »
By wendy, on November 19th, 2011%
 Pain Flares Image via Wikipedia
By Wendy Burnett
Day 10 – The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today: “The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?”
The face of online activism changes constantly, with new causes and people appearing and disappearing like the flicker of lightning bugs on a warm summer evening. I think that health activism is even more fluid, because many of us became activists because of our own heath issues, and when those issues flare we sometimes have to take a break to deal with them.
I actually haven’t been able to write for 10 days or so because of a major flare of my own, caused by a horrible confluence of triggers all happening at the same time. Changeable weather, the two busiest weeks of the month at work, and running out of a couple of the things I use to keep my symptoms under control several days before my check came so I could replace them, all sent my pain levels through the roof. Throw in even higher stress levels than usual and painsomnia keeping me from sleeping more than 5 or 6 hours a night, and I’ve been pretty much screwed for the last couple of weeks. (And let’s not forget the cranky husband who isn’t getting what he needs. He doesn’t complain, but it does make him a lot more irritable.)
Okay, back to the point of this whole evolution, how fluid health activism can be. People appear, disappear, and reappear on a regular basis because of these personal issues; unlike activists that focus on other areas, who (usually) don’t have to deal with random flares of illnesses that can put them in bed for days.
Although it makes it more difficult to plan, I think having an illness is actually a big advantage for a health activist. (Don’t shoot me yet, this is actually going to make sense . . .) Continue reading Online Activism – Learning, Growing, & Evolving »
By wendy, on November 14th, 2011%
 Image by Big Grey Mare via Flickr
By Wendy Burnett
“Shit Happens” – I know you’ve heard the expression somewhere. There are lots of other ways to say it, but it happens to all of us. Things go wrong. They just do. You can’t prevent bad things from happening sometimes, but you CAN stop them from destroying you when they do.
There have been lots of bad things happening around here in the last several months, and we’re all stressed out about them, but I’m not totally freaked like I would have been a few years ago.
Instead of freaking out, I’ve been looking for other options like ways to bring in more money and ways to save on things I use all the time. Instead of becoming paralyzed, I’ve used the “shit” as motivation, and as fertilizer for the flowering of new ideas. Continue reading Shit Happens – Use it to Fertilize the Flowers »
By wendy, on November 7th, 2011%
 Image by ParkerSav via Flickr
By Wendy Burnett
The Health Activist Writer’s Month Challenge (#HAWMC) continues with the day 7 prompt: “Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.”
Mondays for me come more than once a week. Actually, I have a “Monday” anywhere from 3 to 6 days a week, because every day I have to go to work at the “awful place” is Monday.
If you haven’t already figured it out, I hate my job. I would literally prefer that someone shoot me than have to go into that place, but I’ve missed a grand total of one day in the last 18 months. I don’t have a choice, I have to work, or we don’t eat . . .
I work retail, part-time, because retail stores won’t hire full-time workers any more (and I couldn’t survive working full-time at the awful place anyway.) I spend my evenings standing on my feet slicing meat in a deli for anywhere from 4 to 8 hours at a stretch (usually after walking about a half mile to get there,) then walk home. 
I actually don’t mind waiting on customers and doing the cleaning when I close. Honestly, on the nights I actually have time to get all the stuff I’m supposed to do done, I enjoy the job. My customers are mostly nice, the regulars will come by and just kind of “hang out” for a few if I’m not busy; and the people I work with are pretty cool, too. Even my department manager is a sweetheart, and does all he can to not give me a schedule I can’t handle.
The issue is corporate, as usual. They demand more work than any THREE people could do in the amount of time they give us to do it in, then raise hell if it doesn’t get done. (I swear, I think it must be a requirement to get a lobotomy to be promoted to corporate. If it wasn’t, those people would have to know it’s not physically possible for one person to do what they expect.)
Let me give you an example. We’re allowed one person on duty at a time, and are expected to put out stock, wait on customers, make party trays, slice meat for the sub sandwiches another part of the department makes (on busy days, we go through about 40 pounds of ham and 60+ pounds of turkey, which all has to be sliced and weighed out into individual half-pound packets,) help out in bakery and making prepared food, put away deliveries and rotate stock, mark down things that are approaching the last day of sale, scan out outdated food, keep everything cleaned, set up new displays and reset all the stock every time they decide to move things around, and make sure we always have samples out.
We’re open 13 hours a day, and we’re allowed a total of 13 hours a day labor, so they expect us to also do all of the “closing” cleaning while we’re actually open. Now I don’t know about you, but I haven’t figured out how to be in two different places at the same time. Continue reading Moody Mondays – The Worst of It . . . »
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"The moral test of a society is how that society treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadows of life . . . the sick, the needy, and the handicapped."
---Hubert Humphrey
Welcome to the new home of Sick and Tired of Being Sick and Tired. I hope you'll enjoy the changes, and the new resources I'll be adding as I have time to work on the site. Things will look a bit odd while I learn where and how to modify the appearance, so please bear with me.
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