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.

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.

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.

Baby Steps

I found myself saying those words quite often with my Twitter friends, my support group. I've never been good at taking baby steps, I used to be the jump in with both feet and take off running kind of girl. Not anymore.

Fibromyalgia has forced me to slow it down, for awhile I think I've had it in reverse but that's ok. After my diagnosis came more depression which landed me on the sofa, too tired and just not giving a shit. I was not going to get on the treadmill or do yoga. I was focused on the pain and getting rid of it.

Here I am 2 years in and I'm finally getting to the place where I want to do what I can to get my strength back. And if I'm going to be completely honest my visit to the doctor last week really pushed home the fact that I needed to do something. I had 2 high blood pressure readings at the doctor and while she wasn't all that concerned considering I don't normally have a problem, something clicked. My father had high blood pressure, my sister has high blood pressure, it runs in my family and I don't want it to if I can help it.

Of course the lovely weigh in didn't help either but I can't focus on that. The scale is just a number, I don't want it to be how I measure if I'm healthy. I have spent years and years doing that and it's gotten me nowhere. I don't want to follow fad diets or even be a certain size.

I just want to be as healthy as I can.

So last Wednesday morning I hopped on the treadmill that was dusty and had a spider web two hanging from it and I walked. For ten minutes. At a rate that I used to consider warming up. It was all I could do and I got off the treadmill happy in the sense that I had actually done something but frustrated because I remembered when I could do much more. I brushed off the frustration, reported to my friends on Twitter what I had done and went on with my day.

I have walked everyday since then. I've worked up to 15 minutes at a little faster clip. I find myself worrying about the distance, then I think of trying to jog/run again, then I think of the 3 day breast cancer walk, then running a 5K. And while all those things are just fine, I can't go there. I have to remind myself, baby steps. Baby steps.

I will only do what I can do with just a little push past. Gone are the days of not listening or honoring my body. I can't afford that anymore. If there's a day I can only do 5 minutes, that's all I will do. If there is a day that all I can manage is getting my children off to school, that's all I will do.

I think if I continue to show myself compassion and care, I will be able to do more. Beating up on myself, focusing on what was or used to be can't help me today. I guess it's called living in the moment, taking it one day at a time. I call it baby steps.

My Silver Lining

I was going to participate in that blogging thing that I can never remember the name of but you're supposed to blog everyday during November. Well, as you can tell it's the 3rd day of November and I haven't blogged until today.

Oh well, I have never been good with doing group things.

Last night my daughter, Abby, the youngest one had field hockey practice and I completely forgot. Granted she made no attempt to remind me but I even had it written on my chalkboard, in my kitchen that I walk by at least 50 times a day and yet, I still forgot. Honestly I didn't even know what day it was so even though the chalkboard read Tuesday-Abby-field hockey practice-5:15pm, it meant nothing because I thought it was Monday or even Sunday.

I remember when I was one of those moms that NEVER forgot an appointment, practice, party. I was ALWAYS on time. And this is when my children were smaller, when it should've been harder. Of course this was before fibromyalgia.

I do miss always being on time but I've learned to settle for 90% of the time. I do miss being able to remember my schedule for the week without writing it in on 5 calendars and a chalkboard. I miss being able to go and go without having to rest or worry that if I don't rest I will be on the sofa for 2 days unable to do anything but watch tv and tweet. I miss not being in pain even though I barely remember that now.

But to be honest there's a lot that I don't miss. I don't miss trying to be supermom, I like knowing that I don't have to be room mom, have my kids in 15 different activities, be part of the PTA, snack mom, in order to be a good mom. Now that I have to be very choosy as to what I do, I realize that none of that makes me a good mom. What it did was make me crazy, burnt out and unappreciated. I don't miss always feeling like I have to say yes.

I don't miss the rat race, the craziness of trying to keep up, the competitiveness that happens between adults. I guess now I see that none of that matters. I don't care if I'm driving a 6 year old van with 150,000 miles on it, hell it's paid off that's one less worry for us financially. I don't care that I don't own a Coach purse, or a boat, or a camper. Not that I begrudge anyone else those things, if you want them, go for it. I just remember the pressure I used to feel trying to keep up. I don't have that today and it's awesome.

Over the last 2 years my view of life, what's important has changed. Chronic illness has given me that, forced me to slow down and make changes. At first I balked, I fought it, now I am thankful.

I'm normally a negative person but I'm trying to find the silver lining that is always there, just sometimes it takes a little while to notice it's shine.

How I'm Managing

It will be 2 years in November when I was diagnosed with fibromyalgia. Over time I have tried different medications, looking for that magic fix. You know what I mean, like what the Lyrica commercials show. Take this pill and you can garden again. And maybe for some people it does work but in my many conversations with my support group on Twitter, most of us have had side effects that did not make taking it worth it.

I started out on Lyrica and Ultram (tramadol) as well as an antidepressant. After several months and more than several pounds later, I weaned off Lyrica and just stayed with the Ultram. I developed irritable bowel syndrome, actually IBS-C. I became so ill that I had to do a massive clean out if you will (sorry, TMI) and then I started Amitiza. Amitiza worked very well but gave me horrible headaches but I felt the headaches were worth the relief I had.

My pain was progressively getting worse, I tried muscle relaxers along with the Ultram. And they worked on the low pain days which were getting farther and farther apart. I could barely function, I was getting more depressed so back to the doctor I went asking for stronger pain medication.

I was given Vi*co*din and I still take it. I was also given Fe*nt*anyl patches which completely took my pain away but made me zombie like, unable to think, form sentences or stay awake. Then I started having suicidal thoughts. 

One day I was driving home from work, struggling to stay awake and crying. I came to the conclusion that I was taking medicine that was supposed to be helping me but it wasn't. It was hurting me and it was up to me to change that. Once I was home, I ripped off my patch and decided over time I would taper down the pain meds.

That being said, I am not going to suffer needlessly. I have kids, a job, a home and I want to live life to the best of my ability, not just exist. I still take pain meds, just the Vi*co*din. However I have started with some holistic/natural choices as well. And there are two that I swear by.

First is Corvalen which I read about in the book From Fatigued to Fantastic. I use it 3 times a day, I mix it in natural, organic orange juice. It does help my muscles and I can tell now if I've missed a dose. It's relatively inexpensive on Amazon which is where I buy it.

Last but not least is my favorite thing. Ever. I went to my local health food store asking for something to help with my leg cramps and I was told to try this and I swear to you within 3 days no more leg cramps.

I stopped taking it for a time, why I don't know but now I take it faithfully. Every single day and I'm up to 3 teaspoons a day which I break down to 3 times a day. It helps with my back spasms, it helps with my muscle fatigue and aches and it as it's name says, it has a calming affect. It's a fast acting magnesium that you mix with water. 

And it not only helps with my pain, it has completely rid me of constipation. I no longer take Amitiza because I don't need it. Following a gluten free diet and using the magnesium, my IBS symptoms are gone. You have to go slow with this product, start out with a half a teaspoon or 1 teaspoon for several days and build up until you have very loose stools or diarrhea, once you've hit that point you know you've reached the max your body needs and you need to back it down a little.

I'm also taking vitamins C and E, COQ10, ginseng. I'm also on a quest to eat real food, nothing from a box or a mix and I'm slowly making that transition. I'm learning to listen to my body, eating intuitively. I just feel like my body needs love and caring, something I've never shown it before.

Now if you're my friend on Twitter (waving hi) you know that I have my down days for sure. Some days the pain totally wins but my outlook is better. I know I have to have the bad days to appreciate the good. I just have to persevere, put one foot in front of the other and hold on.

Once I get the hang of this blog thing, I will post the books I have read and the ones I'm currently reading. Like we discussed on Twitter last night, I could be 2 months getting through one book, thanks to good ole fibro fog but I promise to pass on what I learn and where you should go to learn it too.

And just so you know, I am not a spokesperson for any of the products I talked about here. I'm just a regular girl trying to get well. Take what you like and leave the rest. 

   

How I Feel

I was diagnosed with fibromyalgia almost 2 years ago, I've had for years but when undiagnosed because I refused to acknowledge how I was feeling. I had too much going on in my life-grieving the deather of my mother, raising my kids, taking care of my ill father. I was raised to just suck it up and to never complain.

I spent years trying to be supermom and the perfect wife. Pushing, pushing, pushing myself regardless of how I was feeling. I refused to take a moment for myself and used to look down on those who did.

I burnt the candle at both ends for years. I took care of my dying mother which was the most traumatic thing I've ever had to do. I was broken after her death with a pain inside me that I never knew could exist. I didn't want to be here without her, I didn't know how to.

I'd like to say that I'm ok now but I'm not. Losing my parents changed me, in some ways good in others not so much. Probably the worst thing is my fear of losing someone else. I have pulled back from those I love because I just can't stand it. Even my children who I love more than anyone or anything else. I regret it, I don't want to but yet I'm terrified to get too close.

After my diagnosis I was relieved because I thought I was going crazy with all my symptoms. I had heard of fibromyalgia but only in the negative sense, that it was fake, just something the doctor throws out when nothing else makes sense. 

I carried that belief even after diagnosis, telling myself it's not that big of a deal, suck it up, you're not dying. For God's sakes, you could have cancer! I didn't look sick, not really. I looked a little tired but who doesn't these days. And yeah, I limp around some, especially in the mornings.

I'm here to say today, as much for myself as for anyone else out there, fibromyalgia is real. My pain is real. So real that there are days where I wonder if I can continue to live this way. So real that I can't even talk because the energy it takes to form words is painful.

I could easily fall into all the negative things that come with a chronic illness because there are plenty. I do it more than I should. I'm trying now to change up my thinking, look at the positive things that have come out of being ill.

I have learned to not sweat the small stuff. I used to get my panties in a wad over every little thing. Now I just let it go, it's not worth the stress which can result in a flare. I love that I'm not like that anymore. I've become a much more understanding, compassionate person. I'm learning to listen to my body more and more. I love that too because I've never been one to check in with how I'm feeling. I'm learning to appreciate little things like having the energy to go shopping with my girls, talk to new people at the field hockey games, the love from my dog.

I no longer burn the candle at both ends and I am so damn thankful. Sure there are times when I wish I could just clean the house in a couple of hours rather than taking a whole day, sometimes two. I don't miss for a second being so stressed that I act like a crazy woman, flipping out over dumb things. I don't miss feeling like I have to keep up-work more for that fancy vehicle, to go out to eat 2-3 times a week, designer shoes and purses.

I've learned to be simple, to be satisfied and it's so much easier. No, I no longer get manicures every 2 weeks or pedicures ever 6 weeks. I don't get my hair cut every 6 weeks. I drive a van that I've had for 6 years that has almost 150,000 miles. We rarely eat out anymore. It was an adjustment for all of us but we've come to a place of acceptance. Our small business is struggling a bit (like many others) and because I physically can't work 2 jobs, we've learned what matters most. It's not things.

If you are my friend on Twitter, you know I have my down days. Some days the pain wins but yet I hold on. I'm strong, I'm able and I will live my life.