MY LIFE: Things to do on New Year’s Eve at home

I am not going anywhere on New Year’s. Instead, my husband and daughter and I are staying home and celebrating. We’re getting steaks and lobster tails, playing some games, and watching the ball drop. That’s fine with me, but others need more excitement, and I have a couple of suggestions.

1. Make a meal out of appetizers. How often do you get to only eat the fun stuff? Pick out one thing for each person in the family and a couple of things everybody likes. Make pizzas or tacos or some other do-it-yourself dishes. Just do it up different, even if it means you order out. Don’t wait too long to place that order, though! You might get stuck in a long line of people wanting their food.
2. Do mocktails (or cocktails if you’re all adults). Kids, especially, love cool drinks, whether punches or other recipes.
3. Watch home videos if you have them. Or look through photos, if only on your laptop. Reminisce about the year that’s passing and what you want for the new year. Make a video while you talk so you can remember everything.
4. Celebrate the new year in different time zones. Every hour, pick a city where the clock is striking midnight. See if you can find footage online of that city’s celebration.
5. Don’t feel like you need to stay up if you’re tired. Go to bed and don’t feel bad about it.
6. Gather blankets, sleeping bags, pillows – whatever’s comfortable, and snuggle up. There’s no need to stay on the furniture. No one’s watching!
7. Make a list of the accomplishments of everyone in the family. Let each person decide what they want; don’t push them to add or subtract items. Hang it up on the fridge to remind yourselves of your collective awesomeness.
8. Use only candles and the lovely glow of the TV to light your way. Bonus if they’re scented (and the scents don’t bother you).
9. Plan a charity activity to do during the next year. My family is collecting goods and money for Operation Christmas Child so we can send a whole bunch of boxes to needy kids next Christmas.
10. Invite others in your life who are struggling, whether with illness, money, divorce, or one of the tons of other things that can make this time of year suck.
11. Make a “Game of the Hour”. Put different games in envelopes and open one each hour. They don’t all have to be board games. They can be video games, puzzles, trivia, or just making something up. This will help with the possible boredom factor.
12. Do resolution Mad-Libs. Print out some things like “The person I most want to be like is…” and hand them out. See what you and your friends/family can come up with.

What things do you like to do when celebrating New Year’s Eve? Tell me in the comments!

MY LIFE: Dealing with depression and anxiety

 

This, in my opinion, is a universal topic. Many people who don’t deal with chronic illness and pain DO find themselves struggling with depression and/or anxiety. I’m going to give some tips about things I do to try to alleviate my own depression and anxiety. Your mileage may vary, and I am by no means a doctor. Please, please do go see your primary care physician if you’re having trouble coping. Don’t go it alone.

By the way, I have a Pinterest board for Chronic Illness Depression and Anxiety. As I said above, you can feel depressed or anxious without experiencing a chronic illness. The pins may still help.

1. Accept that some days you’ll feel nothing, and others you’ll feel everything. That’s how it is with depression and anxiety. You may even feel everything and nothing at the same time. Your brain is playing tricks on you. The more you fight it on this, the worse it will get.
2. Try not to feel bad about how you perceive others feel. This is an incredibly hard thing to do. But remember this — you’re not in anyone else’s shoes. Don’t project your own feelings of inadequacy on them.
3. Someone else, no matter how much they love you, can bring you out or talk you down from your feelings. We all wish they could, but the fact is, they’re YOUR feelings, YOUR experiences. You may or may not be able to change your feelings, and don’t rely on others to either.
4.  Accept that your depression and anxiety are rooted in the rational, and at the same time, that they’re not. More than that, even, we can’t turn it off, no matter how irrational. Depression and anxiety aren’t intermittent things — at least, not usually.
5. Don’t expect others to understand, show patience, etc. They don’t get what you’re going through. It’s not that they don’t want to, they simply can’t. People may think you’re lazy, a hypochondriac, or something else. That’s their problem, not yours.
6. Your decisions will waffle, depending on the day, hour, or even minute. What does this mean? An example: there’s a holiday party coming up. All your friends will be there. You know you’ve had a good time in the past so you’re looking forward to it. Then — BOOM — you’re not. Instead, you’re looking for excuses not to go. Remember, it might not be rational and you might know it, but that doesn’t change the fact you feel it. Some people say you should force yourself to do things you don’t want to, but I say — listen to your body (or brain), at least to a point.
7. Related to number six, there will be times you have to be heartless. This is necessary to protect yourself. You might miss an important event, like a wedding, bt consider this. If you went and then lost it, as we all know we could, what would happen then? Again, people wouldn’t understand. They won’t understand you missing such an important event, either, but you need to come first.
8. Understand you’re battling your own mind every waking minute. Now accept how awesome you are for keeping going. Is there anything more difficult than fighting your own mind? Fighting your body, but that’s another post.
9. If you’re feeling up to it, set a goal to get even one thing done. If you don’t make it, don’t beat yourself up over it. The laundry doesn’t ALL have to be done now. You are allowed to hightail it to the checkout registers even if your list isn’t completed. The world will not end if you can’t do it. But if you CAN do it, give yourself credit. Be proud of your accomplishments, no matter how small you or someone else may think they are.
10. Eat and drink. This sounds elementary, but how many times are you lying on the couch or in bed, hungry or thirsty, and yet not wanting to get up even for the five minutes it would take to reheat a meal? One of the things I do is go somewhere to get food. Yes, it’s not the least expensive way to handle this problem, but at least you’re eating. And getting out of the house to boot, even if it’s only for fifteen minutes. To a depressed or anxious person, drive-thrus are awesome. We have five places within ten minutes of my house that have drive-thrus. I have my favorites, but anything will do in a pinch. Just make sure you keep eating and drinking. (NOTE: My husband just brought me a homemade breakfast sandwich. Sometimes they really do understand. I didn’t ask for it, but he knew I needed to eat.)
11. Snuggle with a child, a spouse, a pet — whoever is willing to cuddle (though I don’t suggest strangers, lol). Even a fairly brief, twenty or thirty second hug releases endorphins. And this is going to sound weird, but if no living thing is available, find a nice big pillow and wrap yourself around it. In my experience, that still helps.
12. Remind yourself that you are enough, in whatever form you take on any given day. You don’t have anything to prove, even if those around you make you feel like you do. Repeat after me: I. AM. ENOUGH. You can even expand on this. I am a good spouse. I am a good mother. I am a good (whatever occupation you have, if you work).
13. Figure out what you need. Why are you feeling sad today? Is there something you’re missing? If you can put your finger on it, do it/get it if you can. Watch a movie. Read a book. Get some ice cream. Go to the mall. As long as it matters to you, it’s right. By the same token, where’s all this anger coming from? Do you need to rail at the world? Then do it. What other emotions are weighing you down? Identify them and how to help yourself, or ask someone to help you.
14. Do something you’re good at. You might be able to fight back against yourself if you have a fabulous cake you baked or a pretty piece of art you created. It doesn’t matter what you’re good at, and even if you don’t succeed, give yourself credit. You did it. You tried.
15. Don’t bottle all your feelings up. Even if you scream at no one in an empty house, you might feel better. It doesn’t help you or anyone else to keep it all inside.
16. Forgive yourself and those around you. You’ll feel better if you let things go. It’s extremely difficult, I realize that, believe me, but holding onto bad feelings or grudges isn’t good for anybody, least of all you.
17. Get rid of toxic relationships. This goes back to the “heartlessness” thing. You can avoid contact with almost anyone, even if you have to work extra hard to do it. It’s worth your mental health to not let toxic people interrupt your well-being.
18. Recognize that shame is a big part of your life. Guilt, shame, whatever you want to call it, will bombard you every day. Acknowledge that, but fight it. Know it might be irrational, know it may not go away. Just do what you can and that’s good enough.
19. Identify easy things that make you feel better. Maybe it’s listening to music, or eating a piece of your favorite candy. Again, it doesn’t matter what you do. If it helps, you’ve won. Even a tiny battle helps win the war.
20. Lastly, when all fails, watch cat videos. Seriously, how can you not like this?

 

What coping methods do you use? Tell me in the comments!

MY LIFE: 5 things I deal with every day regarding chronic illness

There are universal truths when you battle a chronic illness, and I’m no different. Not everyone reading this blog is a chronic illness warrior – some are part of a warrior’s support system or even a person looking for information on chronic illness for a variety of reasons. It’s because of this that I decided to write a post about everyday things chronic illness warriors need to understand and deal with.

1. Sleep is different for me. Other people who don’t battle a chronic illness can yawn and decide it’s bedtime, then go to bed and fall asleep quickly, sleeping through the night. They wake up refreshed and are able to hop out of bed to begin their day. Then there’s my situation. I typically wait until it’s almost guaranteed I can at least fall asleep, but even then I can only count on sleeping four or five hours without waking up.
   Sometimes I can go back to sleep, sometimes I can’t. Because of this, I can’t count on a certain number of hours of sleep every night. I can’t count on my sleep being refreshing. All in all, I can’t count on anything. For instance, last night I slept three hours and thirty-seven minutes. It’s really hard to be productive on so little sleep, I assure you, especially when this happens day after day.
2. I’ll wake up in pain, but I never know what kind. Most of us with chronic illnesses deal with pain most every day. We all realize that’s a part of our illness. What’s harder to come to terms with is that every day is a surprise, and not in a good way. I can’t ready myself physically or mentally for what will happen, and the pain is like a never-ending rain cloud over my head. Every morning, I wake up and my brain registers where the pain is and what kind. Then I need to decide how to deal with that day’s problems.
3. My body has betrayed me and continues to do so. It’s incredibly difficult to know your own body is making you miserable and there’s little you can do about it. People without chronic illness/pain can’t even begin to comprehend what this feels like. I’ve done nothing to deserve this. And I can’t go to the doctor or take a pill to get rid of it. Instead, I battle my own body every day and come out on the losing end, which can be incredibly depressing.
4. Everything I do is based on my illness and how I’m feeling. I can’t make plans or promises because there’s a good chance I won’t be able to fulfill them. Sometimes I have to make plans and hope I feel well enough to follow through on them. I feel undependable and wish things were different. It’s difficult to accept. The idea that I constantly let other people down (even if they tell me they understand), niggles at me day and night.
5. I can’t realize my dreams. I’m an author. I had an established name before everything started to go wrong. But I’ve hardly released anything in the past two years and readers are forgetting me. My royalties are decreasing every month. To add insult to injury, my medical and other costs associated with my illness increase every month. It’s a vicious, never-ending cycle.

I want to note one thing: I didn’t write this to garner sympathy. My aim was to help people realize the particular challenges chronic illness warriors face. I know it’s impossible for healthy people to understand, but hopefully dealing with chronic illness warriors, combined with this kind of information, will help them help us.

Are there things you deal with every day as a chronic illness warrior that I haven’t mentioned? Tell me in the comments below!

MY LIFE: I finished a book! (Sort of.)

On Thursday, September 29th, I’ll be part of a multi-author launch in Carly Phillips’ Kindle Worlds. The reason I said “sort of” above is because it’s not a full-sized novel, it’s a novella. But hey, it’s a release, and since I haven’t had one since January of this year, that’s a pretty big deal!

Here’s the cover:

Pretty, isn’t it?

INSERT BLURB HERE

Kindle Worlds, as expected, are books only available on Amazon. We’re having a Facebook party to celebrate the launch. If you’d like to join lots of awesome authors giving away some very cool prizes, here’s the URL:

INSERT URL

I hope to see some of you there!

 

MY LIFE: Shouldn’t I be writing?

I ask myself this question at least once daily. All too often, the answer is “I don’t have the mental energy to write.” For someone who once wrote over a million words in a year, this feeling cuts deep. It’s hard not to feel useless when you have a chronic illness. My body betrays me daily.

But I still have responsibilities. And I want to do things, and to get better. I realize my chronic illness is not one that will ever go away.

On many occasions, my mind wants to write, but my body doesn’t. Or my body wants to write, but my brain isn’t cooperating. Chronic illnesses can be like that. You never know when or if you’re going to feel good that day, or even something as simple as how high your energy level remains.

Should I push myself more? Not according to my myriad healthcare providers. The answer – at least for now – is that I need to take it easy and to realize I won’t always get to do what I want to do.

This is me, far too often for my liking. Even if I want to write, many times I can’t. But I’m trying, and that’s the best I can do.

 

MY LIFE: My new adventure!

As you may know if you’ve been reading this blog with regularity, besides being a mom, a wife, and a chronic illness sufferer, I’m also a writer. And while I enjoy writing, I don’t always have the energy it takes. When I don’t, but have some time, I’ve started making jewelry. My daughter has also learned how to do some pretty fabulous designs, like the one below.

We opened an Etsy shop a few months ago, and we’d love to have you check it out! Here are some other pictures of our designs:

 

One of the worst parts of chronic pain and illness is feeling useless when you’re tired or flaring. I like making jewelry, because even when I don’t feel well I can do something beautiful. And as an added bonus, I get to spend more time with my daughter!

We can customize almost anything, so please don’t hesitate to contact us with any special requests! Hope to see you out in cyberspace!

One of the hardest parts of dealing with chronic illness is knowing when to stop. When you’re feeling well, it’s as if you can conquer the world. But you can’t, and in the back of your mind, you know that.

So what happens if you’re having a great day? Unfortunately, you still need to monitor yourself as the day goes along. If you don’t, you can crash within a matter of moments. Sounds grim, I know. With a little due diligence on your part, though, you can recognize the signs of your energy flagging.

Your particular signs may vary from someone else’s, but there are usually some in common. For instance, you might be walking along outside and see a bench. You’ve already gone by several without noticing them, but this one looks very inviting. It may be your body’s way of telling you to rest. Maybe once you have stopped walking and sit down somewhere, whether at a playground, a ballgame, or any number of places, you aren’t eager to rise again.

Perhaps your vision starts to blur a little, you begin feeling dizzy, or you develop a headache. Your balance wavers. Muscles start cramping. There are many different things that can happen.

It’s necessary to figure out what your particular “tells” are, so you can recognize them when they happen. And in the event they do, you need to be willing to cut short events, or at least take a break somewhere. It’s difficult to do that. Believe me, I understand. You have to do it, though, or you’re inviting a flare.

One of the worst parts of fibromyalgia is how it robbed me of energy. I was used to being an on-the-go woman, always doing something. Then I wasn’t sleeping (at least, not at night), WAS sleeping during the day, and didn’t have energy to get out of bed, much less clean my house, write, or take care of my husband and daughter.

Chronic illness can rob you of the most important to the mundane. But you can fight back.

I still don’t have full energy. I don’t know if I ever will. I’ve made huge strides, though, and I’d love to share my experience with you.

First, I got off every medication I could – prescription medicines, anyway. I still take a bunch of supplements every day. This method won’t work for everyone. It worked for me, though.

Second, I try my best to eat right. I learned a lot about nutrition, and especially about “leaky gut” and alkaline diets. Inflammation is one of the worst parts of chronic illness, leading to a lot of pain, and it’s made worse by eating certain foods. Here’s a chart of foods that cause or decrease inflammation and one of alkaline vs acidic foods. You want to keep your body on the alkaline side.

Third, I forced myself to get up. Even for fifteen minutes a day, even to do one thing. You may have to fight through pain – a lot of pain. But it will be worth it, especially if it means you don’t miss an important event in your family or friends’ lives.

There are no doubt many more things someone with a chronic illness can do to increase their energy. We’ll leave this post with these three points. At some later date I’ll deal with more. In my experience, though, little steps are what’s needed to fight back. Good luck, and let me know if you have any questions or need more information. I’d love to hear what works for you, too. Tell me in the comments!

When I was diagnosed with fibromyalgia in May 2015, my doctor and I discussed my options for medication. As anyone with fibromyalgia and several other chronic illnesses can attest, few medications exist to treat our condition. The two major ones for fibromyalgia are Lyrica and gabapentin.

Lyrica has myriad side effects, many of which are downright frightening, including increasing your chances of being diagnosed with lymphoma. Well, I’ve already had lymphoma (yes, my health is a fascinating story), so I wasn’t eager to try that medication out. That left gabapentin.

I started taking gabapentin in June 2015. At times it seemed like the medication was helping, but another disconcerting thing started happening. I gained weight. I was 127 pounds in May 2015 and 160 in June 2016, when my husband and I decided together to stop me taking gabapentin. My husband has done a ton of research into fibromyalgia and chronic illnesses in general, and found some disturbing things about gabapentin.

So I ramped off the medication over the course of a month. You can’t just stop taking any of these medications – the withdrawal is often horrible even if you end the medication slowly. But, around the end of June, I was off gabapentin completely. Traces of it should have left my system by then too.

Brain zaps stopped, weight gain seems to have halted. I don’t feel any different; in fact, I believe I’m feeling better. And I’m taking one less medication.

A win for all.

Lately I’ve grown weary of explaining my chronic illness and how it affects my life. I’m sure those of you out there who have dealt with this situation for years are far more frustrated by how few people understand or seem to have sympathy for those of us struggling every day to live some semblance of a normal life.

So I’m fighting back, harder than I ever have before. Want to know what I’m doing? Maybe something I talk about below resonates with you. One of the goals of this blog is to make those with chronic illness feel less alone. I hope I’m succeeding.

1. Walking on a consistent basis: I’m finding a way to be more active, but in a way I can go at my own pace and have measurable goals. My father, at 69 years old, runs a 5k about once a month during good weather. I’m going to try walking in some of them. For many healthy people, this doesn’t seem like much of a “thing”, but we all know how challenging any kind of exercise can be for someone with a chronic illness. Can I walk a 5k (3.2 miles)? I’m not sure. I need to test my current abilities, and then I need to assess how I feel the next day. I won’t put pressure oh myself to try to get the distance. If it doesn’t even happen this year, that’s okay.
2. Taking control of my meds: I was on a bunch of prescription meds last fall and winter. I don’t think any of them were helping me. So, together with my doctor, we’ve made a schedule to slowly ramp off everything I can. When I’m done, I’ll be taking Synthroid, which I have been since 1998, Wellbutrin, which I’ve been taking since 2005,  and birth control pills. No “fibro” drugs, no extra antidepressants, no drugs to help me sleep.
3. Watching the amount of sleep I’m getting: Since I’ve gotten off Effexor the amount and quality of my sleep has risen dramatically. Mostly gone are the endless days of four or five-hour nights; of not being able to sleep at all. Now, as long as I’m not dumb and stay up too late, I can get between six and eight hours of sleep a night. Those aren’t all awesome sleeps that make me wake refreshed, but like I said, far better than before.
4. Looking into “partner” autoimmune diseases: Most autoimmune diseases seem to come with “friends”. I’ve already asked for testing to see if I have Hashimoto’s Thyroiditis, which it appears I don’t, and I plan to push for more testing to eliminate others. Part of that push will include a trip to the Cleveland Clinic, which will hopefully yield some answers. My husband and I did extensive research on where the best doctors and researchers for autoimmune diseases were, and Cleveland Clinic, about three hours from my home in Buffalo, seems to be a good choice.
5. Not letting anyone but me make the biggest decisions: Yes, my husband is obviously very involved and invested in the choices I’m making, but ultimately, there’s no one else who can or should be the last word on my health. I’ll talk to doctors, gather research, confer with other chronic illness warriors, and whatever else I think I need to do to improve my situation. But no matter how badly someone else wants me to do something, if I don’t think it’s right, I won’t. That doesn’t mean I never will. I might change my mind and decide to try a certain treatment or drug or lifestyle change, but it will be my choice.

What steps are you taking to fight back? Big or small, they all count. They all matter and can make a difference. Tell me about them in the comments!