Tyra Creates

Deserve

I've been struggling lately with some things that I thought I had accepted and put to rest. For the past several weeks I have been feeling conflicted and upset about my fibromyalgia, my arthrisit, my pain and my medication.

I'm 39 and I hope I have a lot of years left to live. On the days the pain is bad, I think about that. How I have potentially many years left of living just as I am now and honestly, there's a part of me that isn't sure how I feel about it. Of course I want to live to be an old woman. I want to know my grandchildren and my great-grandchildren. Some days when the pain is in my face, not giving me a moments peace, I don't know how I will manage it.

I keep thinking there has to be more than this, a better way if you will. I've been beating myself up trying to come up with things I can change, try or stop doing. Basically, I'm trying to come up with a different way to deal with my illnesses and their changes, different than how I'm dealing with them now.

My biggest area of conflict is medication. I take a prescribed narcotic 3-4 times a day in order to go about my day. I've never hidden what I take from my family and friends, thinking that full disclosure and honesty was the best way to go about things. Now, 2 years later I wonder if I should've just kept my medications between my doctor and me.

When most people hear the word narcotic, they think of drug addiction. Prescription drug addiction is an over growing problem, I won't deny that. However, there are people who need narcotics for pain relief so they can have some semblance of a life. Those of use with chronic pain are kind of lost in the cracks, overshadowed by the pain and chaos caused by drug addiction.

Addiction and dependence are two totally different things. Am I addicted to my pain medication? Absolutely not. Is my body depedent on my pain medication? Yes, I've taken it daily for over 2 years. Just as I've taken an antidepressant, my body is dependent on it as well.

I'm not here to explain the difference between the two. I know my truth, I just wish certain people in my life would rest easy in that. I'm not against people being concerned for me, I'm even ok when someone tells me they worry about what the medications I take are doing to my body. It's a valid concern, one I have myself on a daily basis. But I have to weigh the pros vs the cons and go with what I feel is the best choice for me.

I get hung up in where concern ends for me and worry for the other person comes into play. By that I mean, how much of it is concern with my health and well being or concern that "others" may find out I take prescription pain medication? The medication you hear about on the news and documentary shows. How much of it is my husband worrying that other people may think his wife is a drug addict?

I don't want anyone in my family to be ashamed of me or shamed by me. That people pleasing part of me kicks in and immediately decides that they are right and maybe I need to find another way. Then the other more sensible side of me very quietly, starts to list all that I have tried. It wasn't that I got diagnosed with fibro and went directly to strong pain medication.

I need to start following the advice I would give to any of my friends, advice that they have given me. I deserve to have the best life possible, not one full of physical pain so overwhelming that I can't get out of bed. This is the life I've been given and I need to work within it. I can only continue to educate my family so they won't worry as much. I can't stop what I need to make them feel better. Somewhere along the line, they will come around and if they don't, that's their issue not mine.

It's Better To Be Thankful

Today I was struck by the green monster. Jealousy. Envy. I know that nothing good comes out of jealousy. Jealousy breeds discontent, anger and bitterness. Those emotions are exhausting and I'm tired enough.

Since I hate when people are evasive with me, I'm going to suck it up and be honest about what me jealous.

I read someone's status on Facebook. Yes, I'm jealous over what someone posted on Facebook. I promise I'm not shallow.

That person was talking about spending the day out with friends, visiting a yarn store and having a leisurely lunch. I was immediately struck dumb with jealousy. I started thinking all kinds of snarky things like "I wish I had the time to spend all day out with friends, doing what I want, spending money and not having to rush!"

If I get honest though, that's not why I was jealous. I was jealous because her status didn't end with a statement of how exhausted or in pain she was from her day out with friends.

I'm jealous of her health.

I can't sit in this long and the only way I know how to change how I feel is to be thankful. Thankful for where I am in my life right now. I can't live in the if onlys, the why me, the unfairness.

I need to be thankful that if I want to I can go shopping with friends because I'm alive. Yes, I will be exhausted and most likely in a lot of pain for several days. But I can do it. I'm thankful that my husband has work which requires me having to work because that means we have a paycheck. I'm thankful to have three healthy, busy children who need me. I'm thankful for my sweet bulldog who needs me even more.

No one ever promised me life would be easy and I've learned that life isn't always fair. I've also learned a lot of life is what you make of it. You can choose to stay in the self pity, anger, jealousy or not.

Believe I'm not the type who spouts rainbows, kittens and unicorns. I'm a realist, lots of time a pessimist and sometimes a down right grump. And that's ok. I just don't stay there long. Life is just plain better when you can be thankful.

 

False Advertising? Not Really.

Nothing irritates me more than Lyrica and Cymbalta commercials.

Take Lyrica and you'll be out gardening and making jewelry. You'll have your old life back. When the commerical comes on, I have this overwhelming urge to throw the remote at the television.

I guess I get irritated because I didn't have a good experience taking Lyrica. Actually, I regret to this day that I ever took it. There are many who benefit from taking it but I don't know very many. Most people that I've talked to feel the same as I do.

Having an invisible illness is hard enough without the misconception that just taking a certain medication will make everything all better. Even those who take the Lyrica and do well, don't have their lives back.

As for Cymbalta, I have been taking it for quite some time now. For my fibromyalgia. Not depression. I tried taking it on it's own for depression and fibro but unfortunately, it was just not effective enough to control my depression. I will say it does help with my fibro pain.

It comes with it's own set of side effects. Weight gain and fatigue are the ones I have experienced. I take it at night because it makes me too drowsy to take during the day.

Also, if you've taken it for awhile, stopping it isn't so easy. It will be a longer process of titrating down and it's not fun. I also urge anyone with clinical depression to talk with your doctor about taking another antidepressant along with the Cymbalta. My pharmacist told me that the literature even states that it should be used in conjunction with another antidepressant.

I understand that drug companies have to make their products sound appealing and wonderful. It's all about making money. I just want to put out the reality behind the medications. The thing with invisible illnesses is that they are in fact, invisible. On the outside we look fine but truth be told, our bodies have betrayed us. We fight pain, so much pain that no pill can fix.

If it was only that easy.

Self Care

Taking care of ourselves is important yet so hard. As a wife and mom to three kids, I've put myself last on the list of everything I take care of. It's a common theme among most women I know. It's easier to put yourself last. You promise yourself that one day you will take the time to do the things you like to do. If you wait too long, like I have, you don't even know what you want to do, what you like or sadly, how to even care for yourself.

After many years of putting myself last, I've realized that I need to love myself enough to practice self care. That my children and husband will actually survive if I do, even if they think they won't. If anything everyone in my life will benefit if I'm taking care of myself.

The whole idea of self care is overwhelming. At first, I went the "normal" route, thinking self care was about diet and exercise and to some degree it is. However, I look at the diet aspect as eating good food that makes your body feel satisfied and healthy. That means different things to everyone. I personally feel best when I eat gluten free, dairy free. Exercise is different for everyone as well. I have chronic pain with fatigue so my activity needs to be gentle. I can't run, I can't even walk fast. But I love yoga, pilates and short walks.

I have also made the decision to dress comfortably. I absolutely refuse to wear clothes that are too tight or shoes that kill my feet. I have IBS and being a woman, I get bloated so I make sure I have comfy clothes for those times too. I buy colors that I like and fabrics that feel good.

I'm trying to carve out time everyday to do something I enjoy. I crochet, read, take pictures, spend time on twitter or pinterest.

I try to listen to my body and rest when I need to even when my to do list is a mile long. That's a hard one for me and I don't always do it. However, sometimes I do and it's not about being perfect. Self care includes being nicer, more accepting of yourself. I am my own worst critic, always thinking I should be doing more or doing it better.

There's more ways to take care of yourself like seeing your doctor regularly, yearly dental exams, having your hair cut, treating yourself to a mani/pedi or massage, calling a friend, snuggle a purring cat.

What are ways you practice self care? Is it something you're good at or are you like me and working on it?

Stromboli Recipe

Ingredients:

2 tubes Pillsbury pizza crust
16 slices provolone cheese
16 slices genoa salami
24 slices sandwich pepperoni
1/4 cup olive oil
1/2 cup parmesan cheese
3 tbsp italian seasoning

2 jars/cans favorite pizza sauce

Preheat oven to 425 degrees. Cover a cookie sheet with aluminum foil, preferably the non-stick variety. This will make for easy clean up.

Sprinkle corn meal or flour on a clean surface. Open a tube of pizza crust, spread it out using your hands and cut into 4 equal pieces. Put 2 slices provolone, 2 slices genoa salami and 3 slices pepperoni on each piece of pizza crust. Roll each piece on a diagonal and place on cookie sheet.Do the same with the 2nd tube of pizza crust.

Brush each stromboli with olive oil. Mix parmesan cheese and italian seasoning together and sprinkle over each stromboli.

Cook for 12-15 minutes. Heat pizza sauce in the microwave or on stovetop and pour over stromboli when served.

This is a family favorite, hope you enjoy it too!

Gluten Free Chocolate Chip Cookies

Recipe from:  Gluten-Free Baking Classics by Annalise G. Roberts

1 cup vegetable shortening (not butter or margarine)

1 cup granulated sugar

1/2 cup dark brown sugar (I use light brown sugar)

2 large eggs

1 tbsp pure vanilla extract

*2 cups plus 2 tbsp Brown Rice Flour Mix

1 1/2 tsp baking soda

1 tsp xantham gum

1/2 tsp salt

12 oz chocolate chips

Preheat oven to 375 degrees. Position rack in center of oven. Lightly grease cookie sheet with cooking spray.

Beat shortening and both sugars at medium speed in large bowl of electric mixer. Add eggs and vanilla; beat until fluffy.

Add flour, baking soda, xantham gum and salt; mix at medium speed until well blended. Mix in chocolate chips.

Drop heaping teaspoons of dough onto cookie sheets 2 inches apart. Bake in center of oven for 8-10 minutes until light golden brown. Transfer to a wire rack and cool. Store in airtight container.

*Brown Rice Flour Mix

2 cups brown rice flour

2/3 cup potato starch

1/3 cup tapioca flour

These are delicious and you can't tell they are gluten free. Gluten-Free Baking Classics is a great cookbook and helped me cook things for my daughter that I didn't think she would be able to ever have again.

 

Powerless?

 The past few days have been rough, the fatigue has been relentless. Fatigue like this is overwhelming and after a few days of it, I become weepy and sad.

I feel powerless.

Yesterday I went to a couple of stores with my husband and it was all I could do to walk. I found myself clinging to the cart, willing my legs to move, each step feeling like I was dragging my feet through mud.

I was nauseous, sweating and worried I wouldn't make it. I didn't say a word. I was too afraid to speak. I think it was one of those times where you just can't say how you're feeling because if you put it out there, it becomes real. If you say nothing, if you don't let anyone else know, then maybe you can even fool yourself.

As we were standing in the check out line, I started wondering where my life is heading. Will I eventually not be able to go shopping without the aid of a wheelchair? Will I spend more and more hours alone in my house while the rest of my family is out enjoying their lives?

The word powerless came to mind.

I don't like feeling powerless but then who does? I'm all about power, strength, pushing through, moving on. Since my fibro diagnosis, I've learned that having power isn't just about physical strength, it's more a thought process.

The most powerful people I know are the ones I've met in the chronically awesome community. These are hundreds of men and women who deal with debilitating daily pain, some are bedridden, some use canes, wheelchairs or walkers. Some take enormous amounts of medication to do what "normal" people take for granted.

It takes power to get through each day facing the hurtles of the chronically ill. There's no greater power than pushing through when part of you just wants to give in because you're so damn tired of hurting and struggling.

When the feelings of powerlessness come over me, I remind myself that in a lot of ways I am powerless. Everyone is. I've had plenty of situations in my 39 years that I had no control over and some sucked. I can say I came out on the other side having learned my most precious lessons.

I have power. Power to change my thoughts, reach out and help others, make the most of everyday. It doesn't matter if I am in bed, on the sofa or at work. I can do all these things and more.

I get scared, I worry about my future and my health. I worry about my children and their futures. There are numerous things a day that I worry about because I can't control them which pushes me right into feeling powerless. Sometimes I cry and feel sorry for myself for awhile. Then I reach down deep and put one foot in front of the other. Slowly I start to feel better, I've found my power.

Things I Love

Things I Love:

Photography

Crochet

Embroidery

Cross stitch

The sound of the ocean

Summer sunsets

My children's laughter

The feel of my husband's hand in mine

Sometimes it's easy to take for granted the things you love. You get caught up in life and all that comes with it.

Take a moment and think about what you love. Make a list. Let's be thankful together.

 

 

 

 

Look Back But Don't Stare

For some reason (hormones)this week I've spent time thinking of life before my fibromyalgia diagnosis. You know the saying hindsight is always 20/20, if only I had known before fibro what I know now.

I took my health for granted. I struggled some before I was diagnosed with hypothyroidism and for a couple of years after. Once the correct dosage of thyroid medication was found, I started to feel better.

That's the key, I eventually felt better. As long as I took my medication and watched my levels, I was fine other than having very dry skin and cold feet.

I wasn't thin but I was strong. I walked 3 miles a day, took early morning exercise classes and even worked up to running/walking on the treadmill. I had good balance, felt healthy and my strength was amazing.

Then I got injured during exercise class. I had something pop in my lower back which caused me to limp for weeks. I quit going to exercise class because I could barely walk on the treadmill let alone run. Around the same time my father became ill and my world became all about getting to know him. Finally. And then it became all about letting him go.

I had lost my mom to cancer 4 years before I lost my father. I found myself at the age of 34 with no parents and depression took over my life. I self-medicated for a few months, I was tired ALL the time but chalked it up to being depressed and hungover. The body aches I chalked up to my sedentary life. I had an excuse of some sort or another for my symptoms.

After several months of feeling like hell, I hit a wall. I could barely get out of bed, I avoided having conversations because at times I wouldn't be able to recall a word or I would forget what I was talking about mid-sentence. I had to make lists of lists, write every appointment on several different calendars in order to remember where I had to be and when and I would still forget. I was so damn tired but unable to sleep. There wasn't a part of my body that didn't hurt. Walking up or down stairs I would have to hold onto the railing and go slowly because I felt like I would fall.

I finally went to the doctor, I couldn't ignore how I was feeling anymore. I was afraid that I was losing my mind, that I would be told that it was all in my head. Thankfully I have a great doctor who took the time to listen as I listed my symptoms and yes, I did write them down because I knew I would forget some. She believed me and said that she was positive that I had fibromyalgia.

Here I am now, 2 1/2 years after diagnosis. I take narcotics daily just to function. I am tired everyday all day. I have insomnia more nights than I don't. I'm lucky to sleep a solid 4 hours. It amazes me how I can be so damn tired but not sleep. I have kids and I work part-time so I push myself. A LOT. Eventually I push to the point of utter exhaustion and for a day or two I can do little to nothing.

I do wish I had enjoyed my health more, done more, listened to my body more. Shoulda woulda coulda. I'm still grieving my "old" life, sometimes more than others. I can't say having fibromyalgia has been all bad. I've made some great friends I've never even met in person but get me more than most who see me daily. I've learned the value of slowing down even when I don't. I've learned to prioritize and say no.

I fight guilt more than I admit. That is something I need to work on. I need to follow what I tell my friends. I can only do what I can do. Don't be so hard on myself. Find joy in the little things. Stay connected to those who understand. Sleep when I can. Read a book even if it takes forever. Watch mindless tv. Keep my phone charged. Wear good shoes. Have comfy pajamas.

Don't live in the past.

Put Yourself First

 Most women I know have a horrible habit of putting their needs and wants on the backburner. I will admit I am extremely guilty of it.

I have cooked dinner when I was in so much pain I could barely stand at the stove. I have sat at sports practices exhausted, its not uncommon to find me sleeping in my car.

Guilt drives me to do things that aren't good for me, to put my needs last.

Slowly I'm learning that I'm not doing anyone any good, especially myself by standing at the stove in tears or driving a kid to practice so exhausted I'm forcing my eyes to stay open. I'm learning to let go of the guilt.

It's not easy. Everyone in my life is adjusting to hearing the words "No, I can't. I'm sorry." They aren't always happy about it which makes my mom/wife/sister/friend guilt kick into high gear. In the past I always caved, now I cave about 30% of the time. It's progress not perfection.

My family and I spend every Easter at my in-laws. We have a big dinner, one of the bigger kids which is one of my kids dress up in the Easter bunny costume and the little kids have an Easter egg hunt. It's a fun day but a long day. A very long day.

This Easter was unusually hot and humid. My in-laws who are wealthy never turn on their air condition. Ever. Their house is big but you cram 30 people, 2 ovens cooking plus a stove top and it's damn hot in there.

I don't do cold too well and I don't do hot too well unless I'm sitting by the pool or the ocean. So as soon as I realized how hot the day was going to be, I planned to drive seperately from my family. That never goes over very well. The kids don't really care but for some reason my husband hates it. And yes, with the price of gas today, driving together would have been the most fuel efficient way but this is one of those situations where I need to place my health and my sanity first.

I managed four hours and then I had to leave. I was sick to my stomach from the heat, developing a bad headache and getting shakey. I said my good-byes and home I went with the A/C in my car blasting. Part of me worried what everyone was saying because this is the first time I've ever left a family dinner early and alone no less.

When I got home, put on some comfy clothes and snuggled with my puppy all those worries slipped away as I started to feel better physically. I sat in the silence, rubbing Mack's soft ears and knew that for once I had put myself first and it had been the right thing to do.

I'm writing this from the perspective of someone with a chronic illness but putting yourself, your health, your sanity first doesn't just apply to us. It applies to ALL women who put themselves last because most do. It's not easy, sometimes you will even make people angry but that's more their issue than yours.

It's taken me years and a chronic illness to get here. I wished that I had reached this place way earlier. I wish that I had learned to stop burning the candle at both ends. I wish I had taken more naps when my body was tired. I wish I had said no to some things so I could say yes to others.

Start today, don't wait. Take the time to enjoy the sunset, sit outside and watch your kids ride their bikes or just run around being kids. Have your husband put the kids to bed so you can enjoy a bubble bath or go to bed early with a good book.

You deserve it.