Fibro

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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

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What Would It Take To Make A Change In Your Life?

“I can’t WAIT for this week to get over!”… I hear myself saying that during the work week a lot. The week-end comes and I spend a lot of it in laying down trying to relax and get re-energized for Monday. I sleep, I sleep a lot over the week-end so I can be ready for Monday. What happens on Monday? I work and spend that time wishing for the week-end. Does this make sense to anyone? It’s crazy. I spend Monday thru Friday waking up at 5:30 or 6, sometimes 7 if I’m lucky, roll out of bed, quietly creep down the stairs, make some coffee and start working. I don’t usually stop working until 6 or 7 at night. I may take a few minutes to eat lunch during the day and a few minutes at night for dinner with the family. I will then work until 8 or 9 some days and then watch t.v. and go to sleep around 10 or 11 depending on my pain and just doze for hours off and on until the morning when I do it all over again. During the days Monday thru Friday I am in a lot of pain. By Friday I am in a lot lot of pain, but that’s what I do I, I work.

Yesterday I started thinking, if I had a year to live, what would I do differently? I mean, seriously… what would I do differently? What about 6 months? A month? What would it take to really make a change in my life? ? I always say tomorrow is not promised, so why do we always live like it is promised?

Right now my life is all consumed with working to pay the bills and I work, work, work. I work all the time. I work so much that nothing else happens in my life. I have fibromyalgia. Wait, let me say that again. I have Fibromyalgia with a big “F”. I don’t let this condition rule my life, but let’s not take this lightly. It does make a statement and it does affect my life and that of my family, so I should make sure I give it some respect here. Back to what I was saying. I have Fibromyalgia and with that, at the end of the day between work and being a Fibromite, there’s not a lot of me left to go around. The energy has been spent and there is definitely nothing left.

Is it possible to work and still have a life, while living with chronic pain? It is not easy. I have it easier than a lot of people. I work from home on most days. I go in the office 15% of the time, maybe 20% in a busy month. I work a lot of hours, which is challenging, 12-14 hour days. So let’s talk about this… Balance is the key to a content life, right? Getting there and staying there probably means being organized – not so easy when you are a fibromite or me (“I’ll take some foggy brain whipped up with a little bit of ADHD to go please“). I love [read hate] those people who are so TOGETHER with their “checklists” and their “tote bags” always on time. Let me stop, I’m not hatin’ on anyone. I keep trying to be together, it just never works out that way. It does, however, give me a reason to buy a new tote bag! But, seriously, I do believe that in order to get through the day, you need to have a serious amount of focus and stop working at a reasonable time and focus on your family life or your health or your personal life. Whatever it is that is important to you. Focus, is not easy when you have foggy brain, it is something that is a constant challenge – I do create my check list and it does help keep me focused (for awhile anyway!).

Live your life as if you only have 6 months to live or whatever amount of time it takes to create a change. I need to really spend some time thinking about this. I think we get complacent and just live. There is so much going on that I just go from one crazy day to another and I need to carve out some time to be still and have time to myself. I have been in a flare for weeks, I need to get on my flare plan and exercise and eat better. Take one thing at a time, not overwhelm myself. What about you? What can you do to manage your pain better?

If today was your last day and you look back on your life, are you happy with all the decisions you have made? What changes would you make? Now’s your chance!

Stay cool! Hope you enjoyed your visit to my blog and come back again. Leave a comment and tell me what you think.

Tamiko

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What Would You Do? Stand Up For Your Pain!

The cameras are rolling…. All eyes on you…. You have probably seen the TV show, “What Would You Do?” I was going to blog about a situation I was in a couple of weeks ago. A truly, stupid situation that I needed some time to get through, mellow out and say to myself, GET THE HELL OVER IT! I wanted to vent and get that shit out of my system, but it would not have helped and it would not have helped any of you! I have to keep reminding myself every hour, every minute of the day to stay positive these days. It’s a challenge, but sometimes that’s what one has to do. Right now, that’s what it is. Prayer and giving my cares and worries over to God is what I’m doing.

My life has been seriously out of balance. Work has been crazy busy – way too many hours. Family and friends close to me are in need of God’s healing hands. The weather has been crazy, mostly rainy and cold. I’ve been in a constant flare for what seems like forever – it’s only been a few weeks. For the first time in a long time I have increased my dose on one of my meds. It sucks, I don’t know if any of you feel this way, but increasing meds makes me feel like a failure, like I’m not managing my pain like I’m supposed to. I agree to a certain extent that I shouldn’t feel that way, but at the same time, I also feel I should be in control of my body. FMS is a crazy place to live. Depression has stolen a lot of my mind the past few weeks and I really want it back. I have fought and fought and fought, I FINALLY feel like I may be starting to come back, it’s so damn hard. It’s like climbing up hill through quicksand (because I have done that before, right?). Trust me, my family really, REALLY prefer the not deeply depressed mother/ wife over the scary/ ugly mean lady that’s been living in the house lately. She scares me too.

Speaking of my family, well specifically my husband… I am not CO-dependent, I am SOUL-dependent (and yes I meant to spell it that way) on (on? of? to?) my husband. I have been blessed with a husband who takes wonderful care of me. He does everything for my children and me. He literally does all the cooking, cleaning, driving, care-taking… this man does my hair, when my daughter isn’t doing it! He also deals with all that comes with chronic pain and depression, oh yeah and let’s not forget – throw in a little bit of ADD. What an effed-up combination! After almost 25 years together he has to be wondering what the hell he signed up for!! There is no return policy here. He had 30 days, but those days have passed and he’s now stuck with me. Thank God!

So! I started out talking about a TV show that puts folks in really awkward situations. A show that ultimately pushes those same to people make uncomfortable decisions. Now I ask you, when you are in a situation where you need to stand up for your pain, do you? Do you stand up for your pain or do you end up suffering? I made a decision to stand up for my pain and I also ended up suffering because I stood up. I am happy I made that decision because I was able to really see some true colors come out.

At the end of the day, most of us can barely stand up for long periods of a time, so why suffer any more than you have to, right? I mean, c’mon! Please do yourself righteous and STAND UP FOR YOUR PAIN!

Thanks for reading! Please tell me what you think, leave your comments and, as always, stay cool!

Tamiko

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This Too Shall Pass… I Am Blessed.

Wow… Where have I been? It’s been over two months since I have written something… and to be totally honest, it’s been over almost that long since I have even visited my blog page. Six months ago, if someone would have said I would let that let that much time pass without viewing my page, I would have just ignored them because I would have thought to myself “NO Flippin WAY!”. Well, it’s true. Now that I’m here, that old familiar feeling is back. It’s the middle of the night, I’m sitting in the dark, on the couch with just the dim light from my laptop…. except this time… same couch – different house.

Where do I start? My life, my life, my life… Lord, I know You do not shoulder more than one can bear… I. Just. Am. So. Very. Tired. I really do try not to complain, I know there are people so downtrodden and their lives really suck, I know I have no right to complain…

Here’s the deal… let me bottom line it for you… I feel like I am starring in a country song where you play it backwards to figure out everything that has been lost (I should win an award for this one!)… I am just not mending… I don’t even know how to mourn anymore. I know hospital emergency rooms and intensive care units up and down the west coast and unfortunately so do my children. What started out as a good learning situation for my children when they were young, has turned out to be a continuous cycle of “Whose Funeral Are We Going to This Month?” … Scarred for life.

Where the hell was I going with this? Oh yeah… I was bottom lining it… let me get back to it…

So! Important in a Chronic Pain Patient’s life… Truth. Honesty. Well in anyone’s life, but more so in a chronic pain person’s life because you spend your entire life explaining your pain to people who do not believe you!

Shortly after the passing of my very close friend Steve’s passing, I lost my Godfather which seemed “suddenly” to me (way too soon as I just really wanted more time!)… Very close after that… we had a traumatic experience with a dog that we were really hoping to adopt (all of my 4-legged blogger friends would totally relate to my experience but Lumpy is in a happy home now!) Well, my son entered college and turned 18 and then my husband and I found out we needed to move out of our house we had lived in for over 10 years. We had less than 2 weeks to vacate. So! I found us a house to rent and we packed up our memories and our furniture and moved to our new “home”. That was the 1st week of November… and did I tell you I was on disability and went back to work the second week of September?

For those of you that were around my blog last year… I was blessed to get out and help pick the tree this year and my husband and I trimmed it this year!

I have this horrible feeling there is a big ass dam inside my body somewhere secret stored up and it’s just going to open up one day… God help the folks that are around on that day. Poor souls… I have a huge smile on my face right now… because Lord knows, all you can do is smile when you think about the poor souls who will have to deal with my ass when I unload on them!

So, now that you are caught up with where I have been and what I have been up to since the last time I blogged….

After all I have been through…

my family still makes me laugh at least once or five or ten times a day.

My parents are still with me and I thank God every single day for this.

I am blessed.

I still have my brothers, sisters and their families and my friends and their families around me.

I am blessed.

I still have my five senses.

I am blessed.

(Ummm I did not say I HAVE sense, don’t get crazy here).

My husband still wakes up every morning and goes to sleep to me.

I am truly truly blessed.

I have fibromyalgia, ADHD and chronic depression and yes…

I am blessed.

For me, it is important to remind myself to remember what I have and to do my best to stay positive. Please be positive with me. There’s enough negativity out there…

Thanks for reading! Stay cool…. and God bless all of you and Happy Holidays!