July 11, 2011 by MyFoggyBrain

From the depths of Hell, I am coming back to life.

Wow, time flies by when you aren’t blogging! I was doing good for a while and then I hit a real low with my pain and depression and life just seemed to stop. Of course there’s not much one can do when feeling like shit… except of course, obsess about how you are feeling like shit.

Meds can be the best thing ever OR they can just fuck with you, excuse my language. I was on the same med cocktail for years. I knew and know that it’s the integrative approach to managing Fibromyalgia that makes life… well, manageable. BUT, I gotta tell you, my meds were seriously making my life Hell. I didn’t realize how truly fucked up my crisis was until I started really contemplating suicide on a daily, almost hourly basis. I lived through about six weeks of the darkest time I have ever experienced. It has taken me a couple weeks just to really realize how close to the edge I was.

Thank God, and I do mean the big guy above, I had the sense of mind to call for help. I talked to my psychiatrist, I talked to my primary care doctor, I talked to the Pain doctor and nurses and I talked to my OB-GYN. Kaiser was awesome, they helped to save my life. Everyone was persistent in making sure I did something. It was frustrating trying to convey what I was going through, but I spent hours, literally four and five hours scouring the internet for information every day. I was obsessed about the latest news and information on Fibromyalgia, depression and the approaches to manage. I finally concluded I needed to change my meds and thankfully, working with my doctors I pushed hard until I got everyone on the same page with the approach I wanted to take.

You know, I am not sure if it was the pain that aggravated the depression or the depression that aggravated the pain during this crisis. I do know I have been under a ton of stress; the weather was constantly changing, it was raining and then sunny every other day; and Lord knows (as all of you do), that sleep was non-existent. All of this added up to not seeing any light at the end of the tunnel. I felt like I was a huge burden on my husband, family and friends and just couldn’t see how I could live out the rest of my life in that hell.

How could I communicate to anyone that I was feeling like I just needed to get out of my misery? It’s weak, it’s unfair, it’s hurtful… but most of all it’s SELFISH. I know all of this and I didn’t want to hurt anyone, most importantly my kids. This was the only thing that kept me going. I didn’t know how to talk to anyone, I am a very private person – and the thought of showing, what I felt was weakness, was unfathomable. I couldn’t bring myself to say it out loud. After days turned into weeks and the weeks just kept passing and things weren’t getting better – I finally talked to my husband. To be honest, it made me feel even worse. He was so devastated (and rightfully so), I just felt like an even bigger loser with a capital “L”. What the fuck was wrong with me? I know it’s not a weakness to commit suicide, you must have commitment and the strength to follow through with the act – but it is quitting, quitting on life, which is a weakness to me.

Well, I am happy to say, now that I am on the other side of that nightmare. This was not a case of suicidal depression. This was, in my mind, for the most part due to the meds (like 99.99%). I read a lot of reviews from people taking Topamax that they experienced the same thing I did. I felt so thankful to know I wasn’t the only one. Topamax was my savior drug when I first started taking it, and it worked for a long time. I was very confused as to why it betrayed me so suddenly without any indication. This drug has been used a lot for fibromites to help with the nerve pain. If you read up on it, it has all the side effects that are symptomatic of Fibromyalgia. I asked all my doctors how I would know if my issues were due to the medication or my FMS. Each doctor said, it was a great question, and that they didn’t know. What the hell? I wanted answers, instead I got confirmation that my concern and confusion was a “great question”. In the end, the mystery of whether or not the drug was making me worse, the many reviews and the way I was feeling were the basis for my decision to get off that drug.

I decided to take a different approach and manage my depression and my pain separately from a drug perspective. I was on Cymbalta for both and I chose to stop. Again, not sure whether or not that drug was an issue for me as well. Oh my Lord, have you seen all the issues people have with getting themselves off that drug? There is a website just dedicated to all the issues with going off Cymbalta. Thousands of people have provided their nightmares out there on the internet, I was extremely nervous about stopping the drug. But I know that after literally spending hundreds of hours researching options, the one that I have chosen is what I want for myself. The options I reviewed: going all natural and off prescription drugs, I looked at diets, I looked at medical marijuana, I read everything I could possibly find. At the end of the day I decided to go with new meds and a gluten-free diet.

I am now on my last few days of Cymbalta and I am feeling markedly better than at my lowest point. I am off Topamax and I went through one cycle of PMS without feeling like I was in the pit of Hell (for the first time in at least a year). I have taken five weeks to cycle off Cymbalta, I decided to take it much slower than the doctor advised based on everything I read. I went down 20mg a week and I don’t think I felt any major side affects. At the same time I slowly started and increased my new anti-depressant. I am also on my third week of being almost 100% gluten-free. (I am still learning what it means to live a gluten-free life.)

Due to the interactions, I have had to wait to start taking my new pain medication until I am off the Cymbalta. It hasn’t been easy but, trust me, I would much rather have pain than the depression I was experiencing. It’s been a worthwhile process. I am starting to see friends again, which is a sign for me that life is becoming bearable. After months of living in greys and black, I am starting to see shades of color.

The lesson I learned is that I should never feel suicidal. No matter how bad things feel or seem in my mind – suicide is not an option. I need to review my meds on a regular basis and make sure that they are working. I know that I have clinical depression and that I need to manage it. I am responsible for my own health, I need to take it seriously and continue to make it a priority.

I’ve been reading FibroWHYalgia, (an excellent book, if you haven’t picked it up I highly recommend it), the author Sue Ingebretson says that making “I am” statements is not good for your psyche. I have really thought about that lately and I notice that I say “I am in pain” almost every day. If I am going to manage my thoughts, understanding that what you think is what you are, saying “I am in pain” dooms me to be in pain. It’s a great point! Changing the mindset is another new challenge for me.

This is a long blog, but it’s so important for me to share with you that you need to monitor and manage your health as diligently as your highest priority. You need to watch for signs that something is wrong and not assume it’s “you”, that it may, in fact be due to your medication. I urge you to journal your daily pain and mood levels, in addition to your exercise and what you are eating as well as the medications and supplements you are putting in your body. Keep in touch with your doctors (don’t let them forget who you are!), make them listen to you or get a new one. YOU are responsible for your health and no one but you can determine if what you are experiencing is “normal” to you.

I am a very private person, but I feel strongly that if this can help someone, it’s important to share. Thank you for reading. Take some time to relax, meditate and breathe.

Stay cool!

Tamiko

My Pain. My Meds. My Pain. My Meds. (myfoggybrain.wordpress.com)
To those who are family and friends of Fibromites (myfoggybrain.wordpress.com)
Depression: Coping With Anxiety Symptoms (webmd.com)
Depression: A Common Fibromyalgia Symptom (everydayhealth.com)
Questions to Ask Your Doctor About Fibromyalgia (everydayhealth.com)
Fibromyalgia Medications (everydayhealth.com)

April 16, 2011 by MyFoggyBrain

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

December 16, 2010 by MyFoggyBrain

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!

August 27, 2010 by MyFoggyBrain

Fibromyalgia and Creatively Finding Your True YOU…

Image via Wikipedia

Post #500 My Foggy Brain… take 5… annnnnnndddd ACTION!

Yeah right! It’s not really my 500th post, but it is about the 5th time I have tried to write a post for my blog. I don’t know what’s wrong with me, every time I start/stop, start again or even finish… something doesn’t feel right. I’m just not feelin’ it. The vibe is not all good. You get what I’m sayin’… it has to be right, to actually push the “Publish” button! Once the content is out there, I need to feel good about what I’m sharing. I am always honest and give my best when I write and I don’t want to start half assin’ things now…

My world has been topsy-turvy, I always wanted to say that… topsy-turvy… Seriously, my life as a medically disabled on-leave full-time person is very different. It took three weeks just to realize I actually wasn’t working. One week to transition my work away, the second week to recover from the prior week of transitioning and the third week was the last week of the summer before school started, in addition, we had some getting ready to do for a family wedding. Let me just say this past week was the fourth week and I experienced a full-on flare for a few days and then recovery mode. Life definitely does not stop for anything.

I will say this… and this is not easy to say. I have chronic depression and I have had it for a very long time. Shortly after going on this medical leave I fell into a major depression. I have been doing a lot of creative journaling and prayer and listening to my Joyce Meyer podcasts everyday. I can feel myself coming out of it, it’s been almost a month. With the journaling to get clarity about some things about myself and my faith exercises along with my physical exercises and the support of my family it has helped to bring me to a better place.

The reason I shared that with you is to show you that it is possible to go from the crappiest place to a better place … but it definitely takes work. As I sit here and type I realize I actually did do some work to get here. As I smile I CAN say, “I didn’t just sit on my ass for the last 30 days.”. Not that I really did believe I sat on my ass for the last 30 days, but it is so far removed from working 12 hours a day that I didn’t actually realize what I had accomplished until right now.

In “finding” myself (I just laughed when I typed that because a girlfriend and I just discussed this phrase last month and “finding myself” in our discussion meant having an affair to a lot of other people…. so if that’s your definition… let me interject… NOT my definition!!)… okay pay attention, back to what I was saying. In my creative journaling to get to know myself better and find out what I really want out of life I bought a blank journal book and a whole lot of color pencils and asked myself some questions… in case any of you are going through this, I thought I’d share some of them with you, as well as a cool website I am using:

I just started with blank pages and wrote out “I Am…” on one page filling in the page with colorful descriptive words that I kept to less than 15 and all positive, on two pages I drew out a big heart and wrote out “I Love…” at the top and listed everything inside the heart… you get where I’m going with this – you can make your own lists to get to clearly define your own YOU.
creativity 101: discover, explore+empower your creative genius. This e-course is free and it’s pretty cool so far. Check it out, for all you creative types, there are weekly courses, meditations and you work at your own pace. for a free course, it’s pretty well done. http://www.abccreativity.com/creativity-e-course/
My big winner this week was finally, after a year of procrastinating, taking the integral tai-chi class! Why did I wait?? I loved it! It was two hours and it was relaxing, challenging, spiritually uplifting, mentally uplifting, physically I felt better when I left and I’m looking forward to the next class… oh and did I mention it was FREE?? These classes are offered through the local libraries so they are always free. With all the hype about Tai-Chi and Fibromyalgia, now is the time to try it out… you won’t regret it!

To finish my post, I went for a walk tonight with my two beautiful children and my crazy dog. It’s the first time I have done this in a very very long time. In fact, I cannot remember the last time I have gone for a walk like this. I really have to cherish these moments, in a few weeks my son goes off to college and soon I fear I will be “invisible” to my daughter. I can feel it coming… It was really nice to get out of the house and be able to walk for 30 minutes. My crazy, funny dog loved every minute and she kept us all entertained (as usual). I really need to give that Caesar Milan a call… I love my dog, but she has that psycho thing goin’ on whenever she sees another dog on a leash…. off leash she is pretty awesome… well… she has her moments… as long as everyone is off leash she is really awesome… honest, she is. look at her pictures, you know she is! she is totally submissive when she goes psycho… she just has this crazy bark that sounds like she is kujo-dog… all the while wagging her tail and as soon as she gets close to the dog, she rolls over to her back… but how would the other owner KNOW that?? They have to be a true dog lover to know that…. and not everyone is, sooooo anyway… how did I get on this?? oh yeah, I am easily distracted…. anyway… I love my dog and you would too if you met her! :)

Hey, thanks for stopping by and please let me know how you are doing today!

Stay cool

Tamiko

PS. The links and that picture are brought to you by this new fancy function in WordPress that I’m trying out… so I may have gone a little crazy with it… what do you think?

PPS. I am having a difficult time finding a theme that I like… hence the constant changing of the themes… still not loving this one… waiting for one to get published that makes me go WOW!

Tai Chi May Help Ease Fibromyalgia (nlm.nih.gov)
Fibromyalgia and Exercise (webmd.com)
Fibromyalgia: Living a Balanced Life (webmd.com)

August 8, 2010 by MyFoggyBrain

Who is Your Lighthouse? Every Fibromite Needs At Least One…

sometimes life is not what it seems. these days, every day feels that way to me. i am not working right now due to my medical situation, my blogger friends will know without a doubt why… but i feel guilty. i can’t quite work out my emotions. this is not a vacation, this is not time to work, this is time to heal. wow. time to heal. i say it out loud and i still can’t believe it. if i do things that i believe are healing for me, i still don’t feel right. this is crazy. i am a grown adult. i am lost.

i can remember the moment the words came out of my mouth. “my doctor has taken me off work.” from that moment on, there was no turning back. i was both scared shitless and relieved at the same time. so many questions going through my head, i couldn’t turn the volume down.

would i be able to heal?
would i have a job to come back to?
what does this mean?
how is this going to effect my friends at work?
what will my children think of me?
can i make this change?
how will my husband handle yet another burden on his already heavy load?

question after question just kept coming up and before i could answer another question would come up… and then all the forever questions… oh shit what will i do if something happens to my husband? i can’t take care of myself, much less my children… why the hell did this happen to me? why now? why did my friend just pass away without giving me the chance to talk to him just one more time to hear his crazy ass laughter? why can’t i pick and choose when i want to be in pain? why can’t it be obvious that i have a medical condition so people will know i am not okay? (i mean… seriously, i much prefer to look anti-social at parties… that is so much better! [btw, i just told my daughter that sarcasm is bad] i always end up sitting in one place or better yet even… like today, having to take a nap because the pain was so bad… nice!) i know this is why many of my chronic pain friends do not go out, but that is not the solution. i want to go out and be with friends and family…

warning – i digress here….

i am watching my children, nieces, nephews, and their friends grow up and what a generation we have coming up around us! these. children. amaze. me. their determination, assertiveness, independence… they have it all. they have grown up with so much technology and knowledge compared to what we grew up with. they have access to so much more information at their fingertips… and they access it and use it with ease… we have raised some strong-minded youth. they know what they like, what they want and by the time they can vote … they will not hesitate to make their opinions known. it’s an interesting time. for me personally, sometimes i just want to scream, i get so frustrated trying to raise my children. they know what they want, have so much knowledge, i can’t battle them – don’t have the energy to fight them. most the time i just want to hold them so tight and not let go. i know they will leave me soon and i will only see them when they want to visit. my time with them will be solely on their terms. their time with me so far has been on my terms. the rest of their life will definitely be on their terms…. how did i get to this topic? hmmmmm…. just typing and this is what came off the top of my head.

and now back to my original post…

as you can see, i am having a very difficult time focusing in one area. i am struggling to wade through this quicksand of emotions. i am trying to journal again. i thought that it would help me “find myself” so to speak. so far not a word on paper in my new pretty journal. zip. nada. nothing. the big zero. “How to Find the Inner You”, “How to Redefine Your Life”, “Where are You?”, “The Map to the Real You”, “The True You”, “This is Your Real Life”, “Your Life Begins Now”, “Life After Chronic Pain”, “Redefining the New You”… etc. all titles of books that would really help me now… if they existed (and they probably do, i just don’t want to pay the price for them, i mean, after the title, what the hell do I want with them?) i have no patience to read a self-help book… i am just really trying to find a way to get myself to stop! write what i’m feeling down! and listen! and really… is this possible? i have journaled all my life, but for some reason, it really is asking a lot of me. you’ll just have to take my word on this one. (by the way, if you are thinking of writing a book and you were planning on using one of those titles above… ummmmm…. go for it. i’ll just take a one time cut. :) i know God has a path for me already written, i just need to stop! and listen! to Him. i never was very good at listening… my husband can definitely vouch for this. (oh man! did i really just put that in writing?)

so… why the lighthouse image for my blog this week? i’ll tell you why. two beautiful women celebrate their birthdays this week. i look to these women to provide safety in the dark for me and they have no idea how much they save me on a continual basis. one beautiful woman because she is and has been my best friend for the past 20+ years and has been there for me through thick and thin and even though i know i don’t call as much as i should… just knowing if i ever need anything i know she is there. she gave me the very very best gift of all, my beautiful goddaughter. i would never have made it to this point in my life, if not for her love and strength… i would not be who i am without her in my life. she taught me how to be a professional, how to know and appreciate God, how to be a parent, how to be a girly-girl and without her in my life i would not have been so honored and blessed to know and love her Mother (and yes that is with a capital “M”!)… it would take a lifetime to just say how much she has blessed my life.

the second beautiful woman because through the friendship of our children, i have been blessed with the friendship of this woman. she has given of her heart over and over and over again and always ever so quietly. there is no way i would have survived the last six years without her friendship. she has a calming effect on me the moment i know she is around. her thoughtfulness, sense of humor, no bullshit attitude is so awesome! i look forward to strengthening our friendship with each birthday we celebrate.

they are my lighthouse in the storm that can be my life. dependable, steady… always there. i celebrate them. i hope that all of you have a lighthouse in your life. there are definitely a few other folks who are in this category who i will celebrate in a later blog…

thank you for reading! stay cool… please let me know how you are doing, leave a comment and let me know what’s on your mind.

take care and here’s a gentle hug for all my chronic pain readers.

tamiko

PS. Thank you so much to everyone!! I just passed 3000 hits to my blog this past week… that is too amazing… THANK YOU!!!