fibromite

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GUEST Blogger Julia Wisnieski: Life With Fibromyalgia

Hi everyone and happy Wednesday! I was contacted by Julia a couple of weeks ago about guest blogging. I think it’s cool to share other perspectives so here she is sharing her experiences and life with FMS. Please give her a warm welcome and I hope you enjoy her posting. Please send in comments and as always… stay cool! Relax and enjoy a pain-free day.

Hugz,

Tamiko

My name is Julia Wisniewski. I live with Fibromyalgia and I blog for Bready, the gluten-free bread machine so I can share my experience with managing my pain with a less gluten-y diet.

Although I have been living with the pain of fibromyalgia for as much of my life as I can remember, I have never noticed a link between the pain and my eating habits. When I was younger, my parents thought that the fibro pain was growing pains. They told me to eat bananas because the potassium is known to aid muscle function. Unfortunately, I never noticed the bananas relieving my pain.

After the diagnosis of FM about a year ago, I emailed a friend of a friend who I knew lived with fibromyalgia. I felt really awkward because she was the older sister of one of my high school friends, but she was the only person close to my age who I knew could share her experience with me. She gave me a lot of spiritual advice as well as recommended cutting down on my gluten and dairy intake. I thought that decreasing the dairy in my diet would be impossible, what with my love affairs with chocolate and cheese and butter.

I have never really been one to sit around and mull over the possibilities, so I decided that I was going to start a less gluten-y diet. I made a list of foods that I was to avoid and posted them on the fridge in my house. My roommates made fun of me for a little bit, but when they realized how serious I was about this diet, they even helped me cut out some foods that are bad for me.

I wanted to manage my pain better. I began eating more rice instead of pasta and used gluten-free flour in my baking endeavors. I felt okay, but I wasn’t convinced that it was due to my new diet. I eventually abandoned my gluten-free efforts because I simply got busier.

I was fine until recently I have been noticing stomach pain. I would feel a brick in my stomach after eating any bread or products I knew were rich in gluten. So I’ve gone back to reducing gluten in my diet. I am hoping that it will help with my stomach issues.

It is so funny to me how out of touch I can be with my body sometimes. I even went back to eating gluten for a while and ignored my body long enough to think that I was okay. It is still a day-to-day struggle. I don’t exactly have time to be worrying about my body, but I know how important my health is.

Besides just trying to replace my pasta carbs with rice and potatoes, I have found that I can use a gluten-free bread maker and make myself breads instead of buying the bland gluten-free breads from the supermarket. It helps a lot to know that even though I have to cut down on some of my favorite foods, I at least don’t have to give up on my bread.

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2012, Here I come!

2012… Damn, how did it become 2012 so fast? Aren’t cars flying in the air now? Doesn’t everyone have robots that do everything? Do we all live in space? Oh wait, that’s the Jetsons. When I was growing up I really thought that stuff would come true in my lifetime. I gotta tell you, I’m glad it didn’t! Remember how people thought the world was going to end in 2000 and again in 2012? I’m very happy those predictions didn’t come true!

Life brings many interesting changes… smart phones and the quality of the picture in HDTV‘s much less these new fangled tv’s that are 3d? It is just insane! I watched Rise of the Planet of the Apes last night and I must say… it was really good. I also thought the first one years ago was pretty good at the time I watched it… I don’t necessarily believe re-makes are a good thing, but this movie, this change was good. Remember how you had to actually talk on the phone? Oh yeah, and the phone was connected to a wall so you also had to stand in the kitchen in most homes, unless you were lucky enough to have one in your room. I do wish many times that my children had to use those phones instead of the mobile phones… but I can’t complain about that, those mobile phones have saved me many times.

Where am I going with this? Well… like the world, like technology, like life… my conditions change. Sometimes it’s not so good, but these days I am doing okey dokey. I started back on an anti-depressant (I think I already told you), some things I have to accept. One of those is my depression is not something I am able to manage very well naturally. I felt GREAT being off all the drugs, but I started to feel really depressed. I know you all know what I mean. I talked to my doctor and we agreed it was time to get medical… I mean medicinal… you know…. back on a drug. Taking a drug, the simple fact I had to flippin’ take a drug, depressed me – but I had to accept it’s okay. It’s okay to take something to help make me not have those crazy ass thoughts that we all run away from. Okay we don’t run, most of us, because running is a bit challenging :). We all walk quickly away from (some of us have our own version of a quick walk which for perfectly fit folks may be considered a slow walk – but hey! We gotta be proud of what we can do). Let’s be real… if you have depression you just sink into these thoughts and they grow like a fog around you and it just gets thicker and thicker until you are completed consumed and you can no longer see blue skies and feel the laughter anymore. So! This is why I am taking an anti-depressant. I am taking the short life Wellbutrin and it’s all going okay. It wasn’t great when I first made this decision, I started by taking Prozac and that just made me feel like a slug with no obsessive thoughts. I switched and now I’m feeling alright. It’s all about managing and accepting change.

If you have Fibromyalgia, ADD, and/or Major Depression like I do, you should be a professional at managing change. Certainly doesn’t mean we enjoy or want change – it’s just a part of our daily lives. If we have plans and we wake up feeling like shit… well? We have to make the best of staying at home and enjoying some down time. We have tried every medical and natural cure, or better said, “fix all” out there. Each time we go through the expectations of taking something new and the outcome and reality that there is no cure today (notice I said “today”). This is managing change at its best (or worst as the glass is half full goes). Everyone with a medical condition faces these types of challenges.

I take each day as it comes and I do my best to appreciate my good days, be thankful for the awesome things in my life and accept change. This is certainly not easy. One of the awesome things I am most thankful for is my support from family (including the 4-legged ones) and friends. I have the most amazing group of folks in my life!! They are all going through their own trials, whether medical or emotional, and I only hope I can be as good to them as they are to me.

2012 is going to be another year of change. It’s going to be awesome because I am going to make it awesome. I hope you do the same.

Please let me know how you are doing, I love hearing from you!

Keep on reading and stay super cool. :)

Tamiko

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The Progress We Have All Made… Fibromites Unite!

I woke up this morning thinking about my blog. I cannot believe I started writing this 2 years ago. I realized, from reading my old posts, that I have come a long way. When I say “Fibromyalgia“, I don’t get as many blank stares, my doctors at Kaiser all “get it” now and I feel like my support system is pretty good. Not just pretty good… Damn good! I hope if you take some time to think back… you can see the progress you have made, that your support system is good, that you can see more blue skies days than dreary grey days.

I cannot believe that I have had over seven THOUSAND, seven HUNDRED hits on my blog!! WTF?? I mean, seriously, if you only knew. When I first started writing, I remember looking at other blogs and seeing how many hits they had and just wishing I could get someone to read my blog. I was so happy when I hit 100! To have had so many folks stop by and read for the last two years is truly amazing. I really appreciate it, I love to get comments and read what other people’s lives are like. It’s so important to me to know I’m not alone. I’m not crazy (okay, the jury’s still out on that), I’m not in this crazy painful world, going through these always new and UNexciting pains, on an island by myself. I am very sorry for you that join me in this world… wait, let me be clear… not sorry FOR you, just plain sorry. I wish none of us had this f’ed up thing we call FMS. But! It is what it is, and I, you, we …. are not alone, we are in this together. Fibromites Unite! (we need a good kick ass theme song  in the background when we say that)

I looked back in my blog and came upon this letter that someone else posted on their blog. It still holds true and I wanted to share it again. I hope you all are having a great day… foggy brain and all. It’s the last shopping week-end before Christmas, don’t overdo it. Take some time to reflect on the progress you made and give yourself a big round of applause and smile. Most importantly, smile. We don’t do it enough… find someone to laugh with today and think positive. Throw the negative shit out the window, hug you family, your four leggeds and be thankful that we have another day to face the world. Make it a good one!

Best holiday wishes to all of you!!

Hugz.

Tamiko

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome):

By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now –
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.

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My Pain. My Meds. My Pain. My Meds.

This vicious cycle of crazy ass pain and taking pain medication is never-ending. I often wonder what would happen if I stop taking my pain meds, but the fear of that excruciating pain is just too much to handle. Yes, I am one of the folks taking prescription meds. I am not taking narcotics on a daily basis, I was taking Darvocet and I have yet to find a replacement for that damn drug. I never took it daily, but it did help take the edge off on those days when the pain was at level 10+. Now I have nothing.

I have hated this process to get to where I am at, but at the very least, I know what to do and my doctors are willing to work with me. They don’t look at me like I am crazy and Kaiser believes in chronic pain and Fibromyalgia and has a program to work with you. That does not mean that it’s easy to figure out the meds, it’s absolutely not easy. I have a fundamental problem with putting this crap in my body. I don’t believe the long-term effects are clear and honestly, it’s scary. I’m watching TV and seeing these lawsuits going on and the meds they are advertising class action suits for? I am on today or have been on in the past! Seriously? It’s not cool! What do I do? I can’t afford the natural path, it’s just not in my current budget. I did try it, and it is a nice way to go. I believe in it, I support it – I just can’t afford it. I wish that it was part of my medical benefit, that would make a big difference.

Even though I have been taking some of these meds for over a year, I still read the papers every single time I renew the prescriptions. Topiramate has the same side effects as Fibromyalgia! This is crazy to me. I think about this a lot. I believe the meds are helping me, but sometimes I have to wonder if the meds are also introducing their own issues. Foggy brain seriously sucks! Is the Topiramate helping or hindering?

If you read my last blog, you know Kaiser ran out of one of my meds. I didn’t end up getting that scrip for 2 weeks. Well, by the time I picked it up I had pretty much become used to not taking it. I decided to go without it. That medication was initially introduced for pain and to help me sleep at night. After being off the medication for two weeks, I believe my pain and sleep is the same as it was while I was on the medication. That was a great “pro” for Kaiser running out of the med, at least I was able to determine I don’t want to take it anymore. One less pharmaceutical in my body.

One of the other meds I am taking is Cymbalta. I am a believer of this med. I have chronic depression and this has definitely worked for me. If I have to choose between being in pain or being depressed, I’ll take pain. I have had depression for much longer than I have had FMS and it is a kind of pain that is unbearable for me and those around me. To be at my lowest point in depression and my highest level of pain and to have to choose between fixing one of those? Wow. That would not be cool. Both are so unbearable.

So… back to Darvocet. I have been having a lot of flares in the last six months. Darvocet was very helpful to me when it was available. Since it has been removed from the market, and for good reason, I have not been able to find anything that works. I have tried Vicodin – this less than mildly takes the pain away, so it doesn’t really feel like it’s worth it. Tylenol with Codein – this does less than zero, feels like I am taking a placebo. The only other alternative my Dr. could offer was Methadone. Hmmmm, at this point I pretty much am not really feelin’ that drug. It just feels wrong, I don’t know. Anything else interacts with the stuff I already take. Very frustrating. Especially with the number of flares I have been having. I need your advice Fibromites and fellow chronic pain mates!!

Well, that’s all I’m thinking about today, thanks for stopping by! I could really use your comments on this one, I would love to hear how you are coping on your meds.

Stay cool!

Tamiko

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Do You Dream?

Are you are dreamer? With the amount of sleep I don’t get, I end up in that dream state a lot. I doze, I nap, I am in REM state…. I just don’t sleep-sleep like normal people. What I do … is DREAM …  in HD … vivid color!! It’s super crazy. I have been dreaming like this since I was a kid. I have dreams that have been going on, continuous or the same dream over and over again. I have these places in my dreams that I have visited many times at different ages. It is to the point where there are things that I honestly don’t know if it is real or a dream. These are moments that I will think about in a blink of an eye and then forget again (who the hell are we talking about here?). I have nightmares. My mom had an angel that she would put over my bed when I was growing up to help me sleep at night. I really loved that angel. I don’t think she realizes how much that helped me. Nightmares are the enemy.

In my dreams I visit people that have passed on. I have conversations with my friends and family about what is going on in my life today. I share ideas and life experiences like they are still with me. I wake up and I forget that they have passed on and I experience the loss all over again. I am a little better than I used to be, if I can tell myself that I am dreaming, I can sometimes prepare myself or even use my time in my dream to my advantage. Really strange, right? But there are times when I just want to lose myself in that dream and just let go… it’s dangerous. I don’t want to wake up. The pain of waking up is so deep, it will take days to recover. I know I will relive that dream over and over again. The pain from that experience, visit, unforgettable dream… one so vivid that it sometimes haunts me forever.

In my dreams I can do anything, I can go anywhere, I can see anyone.

I can fix anything, I can mend any relationship, I can overcome any challenges.

I also see myself struggle and I see others struggle and I feel and it’s not easy. It’s uncomfortable and it’s awkward and it’s real life. It’s not “dream” in the sense that it’s all nice and beautiful and wonderful and perfect. It’s a dream because I have my eyes closed and I am not awake. If I could write it out as it happens, I would do it. I would love to analyze it every day as I dream it. It’s difficult to do as I have too many of these short stories going on at the same time.

Last night I had a dream that I went to see a doctor. I checked in and wait to be called. The nurse who calls me back looks at me in an disapproving way. You know the look, the one that says “you look fine, why are you here”.  This female nurse tells me to come around and meet her at the door and she’ll take me to the back, so I walk to the other side of the counter and stand there and wait for her to open the door. As I’m standing there waiting for her to open the door, I start to feel strange. I can remember I’m holding some papers in my hand along with a book and my purse that my cousin gave me is on my shoulder. The next thing I know, I start to fall – in slow motion. I am fainting. I am falling to the ground, but I have no control, I cannot stop myself. I am going to seriously just fall on my face. This is what it feels like to faint! I can hear the people in the waiting room gasp as they hear me falling. THUD! I hit the ground. My head hits the floor and I feel sick. This is so surreal. I can smell the carpet, I can feel how hard the floor is. There is an older lady sitting in a chair just directly in front of my face, but she doesn’t know what to do. I am just embarrassed. I just fell flat on my face.

The nurse comes out the door and sees me on the floor and calls for help, “Someone call a Doctor! Damn, she fainted!”. I can feel her moving me around, but I’m not sure what she is doing. I am really not well. I recall nurses around and a man with a gurney at this point. I remember feeling the light from the windows coming in. The windows have dark brown wood around them. I am laying on the floor on my stomach and I am not able to move at all, I can feel the scratchiness of the carpet and I can smell the office. I felt really light headed and sick to my stomach. I could hear the nurse talking about getting me cleaned up… and then? I woke up.

I woke up. I was awake for about ten minutes and then it was off to another dream about visiting a girl I was best friends with when I was about eight-years old. I often dream about her and for some reason we are always going to the beach.

I wouldn’t mind dreaming so much if it would allow me to feel RESTED in the morning! My mom and my Godmother are/were dreamers. This is the gift they have both passed on to me.

Crazy, right?

Well, I can’t help what I dream. Do you dream? How do you journal your dreams? Does it help you get through your pain?

Apparently the pharmacies ran out of my pain meds in the bay area so I can’t get them until tomorrow. A week without them, how much fun am I having? Trying to be a good sport, that’s all I’m saying!!

I think my next blog will be about meds. I could use some advice on meds. Hopefully you’ll comment.

Thanks for stopping by. Look forward to your comments.

Take care and stay cool!

Tamiko

PS. The picture was taken by my daughter… pretty awesome, right?

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To those who are family and friends of Fibromites

To those who are family and friends of Fibromites –

I am a Fibromite. You don’t know me, I hope you allow me this moment to share with you how it feels to be me. I am not here to complain. I am not here to vent. I am here to help you understand.

I have Fibromyalgia.

It is a diagnosis. It is not a life sentence. It does not define me.

When you ask, “How are you?”

My honest answer is, “I am in pain.” but I will no doubt say, “I am fine.”

Invisible Disease.

Look at me. I appear fine on the outside.

Come closer, I walk with a cane. I am in extreme pain. If you talk to me, I have a hard time finding the words to form a sentence at times. My memory, well I don’t rely on it. Look at me.

I struggled for 5 years before I was diagnosed.

5 years. Back doctors, foot doctors, Internal medicine, Scans, X-Rays, doctor visit after doctor visit… and feeling frustrated, alone, helpless, desperate.

What does it Feel Like?

It is different for everyone. My arms and legs are heavy and when I try to move them it’s like they have been beaten to a pulp. They shake at will. My feet at times feel like they are asleep, but multiply that nerve pain x 100. My shoulders and neck are sore, just really super sore – like they are saying “please whatever you do…. don’t move” and the side affects from my meds are making my vision go awry. My jaw is sore. It feels like I went through a cycle in the dryer… got hit by a car… did a flip on a trampoline and landed on cement… I’m thinking you get my drift.

What’s that? You ask if I am available for dinner? When?

I hesitate. Planning is never easy for me. How do I know if that damn flare will appear or not? How many time times have I had to cancel? Too many to count.

Where Am I?

I am home. I like to pretend I am “relaxing”. I sleep and I rest. I am safe at home. I don’t have to pretend I am not in pain or have energy. I don’t have to hold my head up. Sometimes it’s lonely.

“I worry about you”

I hear you. I do not want you to worry about me. I do not want you to feel sorry for me. I want you to support me. Exercise with me. Push me to do the right thing for my health and when I’m down, laugh with me.

All Good Things Come in 3’s

I haven’t met a Fibromite who only has Fibromyalgia. I also have Major Depression and ADD. I have my down days and I feel like someone stole my palm tree away from my beach. I can get distracted while, wait a minute did you see that? I hate taking my meds twice a day… every single flippin’ day. Don’t ask me to do the same thing over and …. oh what a pretty butterfly! I am tellin’ you, what a trio of conditions God has gifted me with!

Although life is not always easy, this is the life I was gifted. I accept it and so must those in my life. I have a great support system and those around me are wonderful.

I hope you have learned something from my thoughts today. Please leave your comments and thank you for stopping by!

Stay Cool!

Tamiko