By wendy, on August 18th, 2011%
 Ready to Bloom?
By Wendy Burnett
There are so many websites out there preying on the chronically ill by promising cures or a better life if you just pay them for their secrets or tips or herbal products, that now we view almost everything that requires money with a jaundiced eye. The latest thing is “life coaching.” There are career coaches, health coaches, wellness coaches, life coaches, relationship coaches and chronic illness coaches, all asking for your money and making all sorts of claims about the wonderful things they can do for you.
Is this just another rip-off? Another way of getting what little money you have without giving you what you paid for? Honestly, it can be, if the coach you choose is unethical or poorly trained. Even if you choose a great coach, if you go in expecting to pay your money and get “fixed,” you’re going to end up feeling disappointed and ripped off.
A lot of coaches make it sound easy, like all you have to do is come in and talk to them, and everything will automatically get better. Well, not exactly . . .
Coaching, like psychological counseling, can make a huge difference in your life. BUT (and this is a very big but,) it is definitely not simple or easy. Like anything else in life worth having, you have to work for it. You have to be willing to make changes in your life that may be difficult or uncomfortable, to look at the things you do that may be sabotaging your progress, and to do the work necessary to get where you want to be in your life.
If you want to have less pain, but the only thing you’re willing to do to reduce your pain is take a pill, coaching is probably not for you. On the other hand, if you’re willing to look for other ways that may help, and actually try them, a coach can be a useful “tool” to help you find options and keep you accountable.
In the past I’ve often said, “I’m going to do this or that,” and then life happened and I forgot, or I got lazy halfway through and stopped before I’d given it enough time to find out if it helped or not. That is exactly what a coach is for. They’ll check in with you at your appointments and find out if you’re actually following-up on what you’ve decided to do. If you’re having trouble figuring out what’s next; they’ll provide tools that can help you decide, or find options, or decide what’s the most important; but they WON’T do the work for you.
A coach won’t tell you what to do, decide what you should try, or talk to your family for you. (If they do, run in the other direction.) They won’t do the research for you, and although they may give you a list of options to check into if you’re totally lost, they’re more likely to give you homework that involves finding those options for yourself. The entire purpose of coaching is to give you the tools you need so that you can go off and do it for yourself.
As odd as it sounds, a coach’s real job is to put themselves out of a job . . . and an ethical coach will try to get you to the point where you don’t need their services any more.
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By wendy, on August 11th, 2011%
By Wendy Burnett
Change is difficult for anyone to deal with, but it can be terrifying when you have a chronic illness. There are so many things to be afraid of, so many “what ifs” to overcome, that making a decision becomes almost impossible. All the unknowns are paralyzing, freezing us in place, so we refuse to do anything differently because we’re so afraid.
What if adding a new medication makes me feel worse instead of better? What if my doctor refuses to write my pain prescriptions? Will having lunch with my best friend put me in a flare? Continue reading Coping with Change, Spoonie Style »
By wendy, on August 5th, 2011%
 Image via Wikipedia
By Wendy Burnett
On August 10th, FibroDAZE is excited to be hosting PFAM and the theme is “Your Happy Place.” (We’ve all heard the expression “Find your Happy Place.” That may be a tough thing to do as a chronic chick. So this edition of PFAM asks “Where’s your Happy Place?”)
There are things that help me feel better on bad days (most of the time,) but there are other days, like today, when it just feels like no matter what I do, I can’t win for losing . . . On days like that, it starts feeling like there isn’t a “happy place” because nothing works.
When that happens, I drag out the headphones and the set of nature sounds CDs, and pick out a CD with ocean sounds on it. (I’m landlocked, and can’t afford to take a trip to the beach every time I need the ocean, so I bring the ocean home. I swear, if I can ever afford to, I’m moving somewhere I can get to a beach in less than an hour.)
I get nice and comfy, with hot packs if I need them; crank up the CD, lay back and visualize being at the beach. I’ve had this “fantasy” so many times that I can literally feel the warm ocean breeze and the sun on my arms; I can smell the salty, fishy, organic scent of the ocean; and can see the seagulls flying against the deep, rich blue of the summer sky. I can feel the hot, gritty sand under my bare feet; and then the cool, salty ocean surf as it splashes over them and recedes, over and over.
I walk down the beach, with the surf washing over my feet, and every time it recedes, it draws some of my stress and worry with it. Continue reading My “Happy Place?” Some Days I’m Not Sure I Have One! »
By wendy, on June 23rd, 2011%
 Image via Wikipedia
By Wendy Burnett
If you take more pain medication than your doctor has prescribed for you, on a regular basis, you have a much bigger problem than you think. Whether the doctor is under-prescribing or not, if you’re constantly calling and asking for more meds, you are labeling yourself as an addict.
Even if you legitimately need a higher dose, taking matters into your own hands will only make it harder to get. The more desperate you seem when you ask for more, the less likely your doctor is to even renew your existing prescription, let alone increase it. Continue reading Do You Take More Pain Meds Than You’re Supposed To? »
By wendy, on May 6th, 2011%
 Image via Wikipedia
Are you living in the future? In the time when there will be a cure, or a treatment that will make everything better? Or do you live in the past, rehashing old trauma; remembering all the bad things that have happened to you? Or maybe you live in the past, dreaming of the days when you felt GOOD; when you could work all day and still cook dinner when you got home.
I’ve been in all those places, over and over; and you want to know what they taught me? That I’ve spent a big portion of my life missing out on my “now.”
My past is over. The good and the bad are gone, they live on only in my head and in how they’ve shaped me. The only power the painful times have is the power I give them to affect my present. If I obsess over the wrongs that have been done to me in the past, or the things I’ve lost; it prevents me from being able to enjoy what I do have.
The future? There’s no guarantee that there IS a future. If I’m walking home from work worrying about what I have to do when I get here, I don’t see the roses blooming, I don’t smell the sweet honeysuckle that grows beside the sidewalk or hear the beautiful bird song.
I can walk home focused on what I’m going to do when I get here, or focused on how tired I am, or how much my back (neck, hip, knee) hurts; and the more I focus on the pain, the more I hurt; the more I focus on all the things I have to get done, the more stressed I get.
My other option is to acknowledge the pain and what needs to get done, then focus on how good the sun feels on my skin or how sweet the honeysuckle smells. I can choose to focus on the beauty of the roses, or the pain of the thorns. It seems such a small thing, that choice; but it’s actually huge. It’s the difference between having a good day, or a painful one; the difference between being stressed out or relaxed. The pain is going to be there anyway, it’s always there; but if I choose to focus on the beauty I will be happier than I will if I focus on the pain, and in the end, isn’t that what life is all about?
The biggest thing I’ve learned in this journey is that positive thinking won’t cure my illness, but it sure as hell makes it easier to live with.
By wendy, on April 13th, 2011%
Of all the symptoms of fibromyalgia I have to deal with on a daily basis, FibroFog is absolutely the worst for me. I can deal with pain and stiffness, I’ve adjusted to always being exhausted, anxiety and stress are a constant undercurrent, but feeling like I’m losing my mind? THAT one bugs me.
I have to use lists constantly, or I’ll walk out of the house without my head one of these days. (Of course, a list does a lot more good if I can actually find it.) I have to laugh most of the time, because some of the things I forget are just SO ridiculous . . .
Have you ever gotten half way to work and realized you forgot to put on your bra? I have. Funny? Yes. Irritating? Even more so. I probably could have gotten away with it, considering it was in the winter and I was wearing three layers of clothes, but still . . . not appropriate. Besides, try explaining to your male boss that the reason you’re half an hour late is because you walked halfway to work before you realized you’d forgotten your bra and had to go back and put it on. NOT fun. Funny, yes, even hilarious, but definitely not fun. Continue reading FibroFOG – The WORST Symptom Ever? »
By wendy, on April 3rd, 2011%
Have you tried herbs or supplements for your chronic illness? I’ve had to find “other options” for treating my fibromyalgia and bipolar disorder because of my financial situation, so I’ve been doing a lot of research and collecting some tools for working with the herbs I like to experiment with.
 Capsule Machine and Completed Herbal Capsules In other words, I’ve been learning to make my own herbal treatments for my various symptoms. I ordered an “encapsulator” for making my own herbal capsules, and have been playing with that a LOT. Instead of buying bottles of herbal supplements, I’ve been making my own. Continue reading Making My Own “Medicine” for My Chronic Illness »
By wendy, on March 10th, 2011%
(Disclosure notice: Links to product pages in this post are affiliate links, and if you make a purchase using one, I will receive a payment. If you enjoy this blog and intend to make a purchase, I would greatly appreciate your use of my links to do so. It will not affect the price you pay, and will help me keep this blog online.)
Chronic illnesses tend to wreak havoc with family finances. Between the cost of treatment, and the reduction in the ability to work; having an illness like fibromyalgia, bipolar disorder, myalgic encephalitis (chronic fatigue syndrome,) lupus, migraines, or any of the thousands of others out there can destroy a family’s financial security and severely limit the ability to provide traditional healthcare.
My illnesses have put me in the position of not being able to afford the several hundred dollars a month I was spending on medications with my insurance (and with the insurance we have now, the more than $1000 a month they would cost would take pretty much our entire income,) so I’ve had to find other options.
It’s been an interesting journey, and there have been times when I’ve seriously considered just killing myself and getting it over with (mostly during the forced withdrawal from the psychiatric meds I used to be on for my bipolar disorder.) I’ve reached a point now where I’ve found enough other options to manage fairly well, and I’m actually happier without the prescriptions than I was with them. (Even if I hit the lottery tomorrow, I wouldn’t go back to taking all the stuff I used to be on.)
It’s more work than just popping a handful of pills several times a day, but using herbs and aromatherapy to treat my symptoms is also very satisfying. I have much more control of what I’m putting into my body, I’m supporting the natural processes my body uses to heal itself rather than subverting them, and I’m not dealing with multiple side-effects that have to be treated with yet another expensive medication that comes with its own set of side-effects.
Natural treatments do take longer to “kick-in,” and I sometimes deal with slightly higher pain levels than I would if I could just take a heavy-duty pain-killer, but I don’t have to worry about becoming dependent on most of the herbal treatments I use, either. (Which also means that I don’t have to worry about withdrawal symptoms if I switch things around or run out of something.)
There are several herbs that I make certain I always have on hand, and as I promised in part 1, those are the ones I’m going to focus on in this post.
Disclaimer: I am not a doctor, and nothing I say in this post is intended as medical advice. If you find the idea of using herbs in your treatment plan intriguing, be sure to do the research and discuss any changes or additions with your healthcare provider to ensure your safety.
 Making Skullcap Capsules Skullcap: I use this one for pain reduction (it has actually helped more with my sprained shoulder than the Lortabs the doctor prescribed,) stress reduction, and help sleeping. I try to get it online, from Mountain Rose Herbs, because it’s half the price that I pay at the organic grocery down the street. ($15 a pound, as opposed to $30; so even after I pay for shipping, I save money.)
It works well for headaches (especially tension headaches,) and muscle pain; and in combination with other anti-inflammatory herbs like ginger and turmeric, it also helps with my arthritis/fibromyalgia pain. Continue reading Making My Own “Medicine” – Part 2 »
By wendy, on December 8th, 2010%
 The Main House Tips for Surviving the Holidays with a Chronic Illness
Whether you celebrate Christmas, Hanukkah, Kwanzaa, Winter Solstice, or some other midwinter holiday, this time of year is the worst for those of us with chronic illnesses. Pacing goes out the window as we push ourselves to “get it all done” and not “ruin the holiday for the rest of the family.” (Some have even heard that from family and friends. “If you don’t ______, you’ll ruin the party for the rest of us.” “We can’t leave now, we’re not finished with the shopping.” “You can’t lay down and rest, everyone expects us to ______.” “It’s not Christmas without a tree.” “You’re ruining it for all of us.”)
Family and societal demands double and triple, insisting that we must decorate, shop, cook, attend parties for every social group we belong to; and give, give, give. We’re expected to give our time, give our money, and give our energy; and after it’s all over we pay dearly in higher pain levels, more exhaustion, and fewer financial resources to apply to treatment.
It’s hectic and exhausting, but there ARE ways to ease the strain, so here are my favorite ways to save myself time and work during the holidays.
Christmas Cards:
- There are several options for this one. Sending “ecards” is quick and easy, especially if you don’t personalize them much. Choose your favorite, and email it to everyone.
- For a more personal touch, you can use one of the programs for making your own cards, then turn the card into a .pdf file and email that. (I know MS Publisher allows you to save files as .pdf, or at least they did the last time I did cards.)
- Eliminate cards entirely. (I worked my way up to this one over several years.)
- For those who have a family member who insists that individual paper cards MUST be sent, tell them, “okay, you want paper cards, go right ahead and do it yourself.” (This is tough, especially if you have problems with setting limits, but stick to your guns, it’s worth it.)
- The “family newsletter.” This can actually be fun to write, and if it’s something you’ve been doing, some small changes can save you some work. Traditionally, the family newsletter includes the dreaded “holiday photo,” either as an insert, or as part of the newsletter itself. Instead, why not use pictures taken throughout the year to illustrate your stories? It’s easy to use a template in most word processing programs to create a newsletter, and inserting a photo into documents is easy. For real savings in time and effort though; don’t print it out and go to all the work of folding, addressing envelopes, and mailing it. Most word processors now either include the option of “print to pdf” or have a plugin you can get. Turn your newsletter into a pdf and email it. You’ll save yourself some time, energy, and expense; and you may even save a tree or two. After all, most of these get read and thrown away anyway.
Shopping:
- Simplify, simplify, simplify. I know you have computer access, if you didn’t, you wouldn’t be reading this. USE the computer. Do your shopping online. If you’re nervous about using a credit card on the web; buy yourself a prepaid card the next time you’re in the grocery store, load it with your gift budget, and shop to your heart’s content.
- Take advantage of the extra services available on many shopping sites. Have the gift wrapped and shipped directly to the recipient. (Yes, it costs a bit more, but think about how much it costs you to buy all the wrapping paper and supplies, do the wrapping, repackage and ship it again. Then add in the cost of the extra pain medication you have to take after wrapping it, taking it to be shipped, and standing in those long lines. Believe me, it works out.)
- Gift cards. (I know, some folks call it the “lazy” way out, but I LOVE them whether I’m getting them or giving them. What could be bad about knowing I’m going to actually get something I want or need, or that the person I’m giving it to will actually ENJOY whatever they get?) You do have to be careful with this one though. Cards for specific stores can be problematic if it’s not somewhere they shop on a regular basis, so if you want to make certain your recipient gets to use it, get something for a store you know they’re in all the time or that they can use online. Otherwise, get something like a prepaid credit card that can be used anywhere. (Please, please, don’t buy them a card that’s only good in one place if they never go there. You’re wasting your money, and they aren’t getting a gift at all; or they’re being forced to go somewhere they don’t want to be, and what fun is that?) Oh, one more thing, check expiration dates, you don’t want them to try to use it only to find out it was only good for 30 days from the time it was purchased, and you bought it 25 days before you gave it to them.
Decorating:
My choice for decorating was to opt out entirely, but that doesn’t work for everyone. Especially if you have younger children, you’ll at least want to do a little decorating, but keep it simple and you’ll thank yourself later.
- There are a lot more options out there than there used to be, like pre-lighted trees, and using a small tree to minimize the need for bending and stretching to hang decorations ( a 3 foot pre-lighted tree set on a tabletop will cut the pain and fatigue to a minimum, since you can easily reach the whole thing to add garland and decorations.) There are also small ceramic trees available, if you just want a little something to look at without having to do more than set it out and plug it up.
- With older children, you can “delegate” the decorating chores as long as you’re willing to allow it to be “not quite perfect” and can supervise without being drawn into the decorating process.
- Outdoor decorating should be left strictly to someone else. If the outside HAS to be decorated, and you don’t have someone to do it for you, hire someone. Outdoor decorating is much too physical for most of us, and really isn’t worth the risk. (I have the best of both worlds actually, because we rent, and the landlords decorate the main house.)
Parties:
On this one, you have to prioritize. There are likely to be more parties than even a healthy person should try to attend, so pick the most important ones. It’s more than reasonable to limit parties to no more than one a week, or to do one “work” party and one family party (if you’re in a long term relationship, you may have to do two family parties, one for your family, and one for your partner’s family.) The response to all other invitations should be a polite, “I’m sorry but I already have an obligation on that day.” (They don’t need to know that the obligation is to take care of yourself so that you can survive the holidays.)
Cooking:
This one is especially tough, since no matter what else is going on, you still have to eat, and many parties will be a potluck style where you have to bring a dish. Whenever possible, purchase a prepared dish from the grocery store, put it into your own nice serving container and relax.
In some cases, this isn’t possible because you’re responsible for a particular item that isn’t available in a prepared version, but don’t lose hope. Check out new recipes for it and choose the simplest, or get someone to help. Older children can peel potatoes or eggs, can use a potato masher, can stir things and open cans, and can do the post-cooking cleanup. Even smaller children can do things like hand you things, get things out of the pantry, reach into the lower cabinets for pots and pans, and just generally fetch and carry to save your back and legs. If you have a child that’s old enough (and responsible enough) to learn to cook, let THEM do the heavy lifting while you simply show them how to do it and supervise.
For your own meals, this is definitely the time of year to keep it very simple. Take out is a lifesaver, but if it’s a bit more than your budget (or your body) can handle, there are tons of quick and easy recipes online for you to choose from, as well as a wide array of heat and eat or prepared meals available at the grocery store. (A frozen dinner may not be the best meal in the world, but when you’re exhausted and in pain; it’s better than not eating or having a package of cookies for dinner.)
Religious Observances:
Sorry, I wouldn’t touch this one with a 10 foot pole, so you’re on your own here. Religion is too personal, too intimate, for me to try to tell you how to manage. My only advice is to do the minimum you are comfortable with.
Finally, even with the extras, be sure to maintain medication schedules and stick as close to your usual schedule as possible. Adding all the additional activities of the holidays is hard enough on your body, don’t make it worse by skipping meds and neglecting necessary personal care.
By wendy, on September 19th, 2010%
This time, the ChronicBabe Carnival asks “how do you handle a crisis?” No matter how hard we try to take care of ourselves, there are times when things go horribly wrong, either with our health or some other personal issue. how do you prepare for such a turn of events? how do you cope in the middle of it all? and how do you recover?
This is a tough one for me, because I don’t handle crisis well any more. There has been so much crisis in my life in the last four years that I live with a constant sense of doom, waiting for the next thing to go wrong, and when it does, I plunge back into depression.
Ask any of my friends and family, and they’ll tell you that I’m normally calm and laid back, that I don’t panic easily, and that I’m very rarely cranky or irritable. On the surface, I seem okay; but on the inside, my stress and anxiety levels are so high that I constantly want to scream at someone; my hair falls out in double handfuls; and every time I think about it, I realize I’m grinding my teeth AGAIN. (And this is with multiple stress reduction techniques in daily use.)
How do you prepare for a financial crisis when you barely scrape by; how do you prepare for a health crisis when you suffer from multiple chronic illnesses and can’t afford a doctor; and how do you prepare for random equipment breakdowns, weather damage, and all the other unpredictable things that can go wrong when you’re just plain out of emotional resources?
I’m not sure how to explain it, but somehow, I manage. Mostly, I “tough it out,” putting one foot in front of the other, doing the next necessary thing until I’ve gotten to the other side. I’ve found a great network of online friendships with others that actually understand what it’s like to live with illnesses that make it difficult to plan ahead, and that know how it feels to sleep for hours and wake up more tired than you were when you went to sleep. I’ve finally learned to reach out, and although it’s rare for me to let anyone know just how bad it really is, I’m learning to set aside my pride and accept the support that these wonderful men and women offer.
My major coping mechanisms involve meditation; relaxation exercises; medicinal teas; aromatherapy; and talking things out with my hubby, roommates, and online friends. It’s amazing how many new options can be found by just TALKING to people with a different perspective on an issue, and even when the particular solutions they suggest don’t work, they usually lead to a solution that will.
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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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