fibromyalgia

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Pain and Parenting

We have a son in college and a daughter in middle school. Both of our kids are amazing. I thank God every day for keeping them safe and healthy. I know that there is only so much I can do in the short time I have with them before they go off on their own, only so much advice I can attempt to give.

My life as a parent is challenging living with the illnesses I have. The best I am able to do is to share my experience living with depression and ADD and try not to feel guilty for the disabilities I have with my pain (both physical and mental).

Guilt is like stress – it’s a killer. I have a lot of it when it comes to being a parent.

B.F. (Before FMS), I was a serious work-a-holic. I worked 14 sometimes 16 hour days, 7 days a week. I would literally roll out of bed and start working, drive to the office and work until late at night and drive home, check my email again and then just barely make it in the bed… sleep a few hours and do it all over again. I did this until my body broke. I went from crazy, insane drive myself to exhaustion on a daily basis to never being able to recover again because I was broken. Years later to be diagnosed with Fibromyalgia.

My children have… suffered is a strong word, but they have had to adapt to me being unavailable due to my work and then unavailable due to my pain. When I say there is guilt there, that’s an understatement. There are a lot of times when I feel like a failure simply because I can’t drive. Those people who complain about “taxi’ing” their children around have no idea what I’d do to provide that service. I see that time as a good opportunity to have 1:1 time with the kids, my husband has learned a lot in the times he has driven the kids around.

It takes a lot to work full-time and manage this crazy illness. I know a lot of people do it, this definitely helps me to have hope. But, I’m telling you – by the time Wednesday rolls around I’m starting to get very tired. Thursday? Counting the hours and on Friday! Just forget it! By late morning I can barely hang on. The week-ends are about trying to relax and not over-do it so I can start all over on Monday.

How does this work with parenting?

It’s definitely about teamwork. Although sometimes I get very jealous. My husband does it all… he cooks for the family, he transports, he does the shopping, he is the “go to” guy in the house. I know I shouldn’t be jealous, but I want to be that person… I want to be the “go to” gal. The problem is, I’m in no condition to do what he does. I’m unreliable. I’m inconsistent. At the end of the day, literally, my husband really IS the guy. If it wasn’t for him this family wouldn’t function.

Reconciling these emotions that I have is tough. How can I be upset when everyone is being taken care of? I should not be complaining, I should be happy. It’s a blessing. At the root of all this, I want to contribute. Practically and emotionally. Not being physically or mentally able to do this kills me. I feel guilty that I am not able to do more, that I didn’t make the choice to do more when I was working all those hours. Like I said… guilt is a killer. I can’t let it win.

I know, in my heart, that my children love me. I know that my working provides for the family. I know that I can’t do it all or, a lot of the times, even more than what I do. It’s up to me to accept who I am today and constantly strive to be a better and good person. I know God has a defined plan for all of us. All of this, I know. But still, I struggle with the constant roller coaster of feeling okay, feeling great, feeling okay, feeling like shit, feeling okay, feeling great! That roller coaster creates a lot of frustrating emotions and wreaks havoc on any kind of planning in my life. This makes it tough to be an active participant in the family, hell it makes it tough to be an active participant in LIFE.

The pain, mental and physical, is not a small issue in parenting. I can’t expect my kids to know what I’m going through and how it affects my behaviour and communication. It’s not their responsibility to figure it out, they have their own lives to lead. It’s up to me to do a better job of communicating and work on patience and mastering mindfulness thoughts.

Don’t let the pain win, right? Mindful meditation, prayer, yoga… all these things are helping me make it through. We have all had and will continue to have challenges that we face, it’s all in how we face them to get to the other side.

As always, I’d love to hear your comments. Thanks for stopping by!

Stay super cool!

Tamiko

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How clear is your head? My fibro life post-detox.

It’s been exactly one month since I last posted to my blog. I haven’t been here. I haven’t checked my blog, I haven’t been on Twitter, I haven’t been social networking much at all. I have just been trying to live and take every day as a new day. My new life without meds. This is very new and uncharted (honestly I thought the word was “unchartered”, but it’s apparently not a word) territory for me. I have been on some type of medication for as long as I can remember. Meds for depression, meds for pain, meds for insomnia, meds for migraines… Lordy! There is definitely a prescription for every ailment. It’s super crazy when you think about it. The pharmaceutical companies definitely make money off us chronic pain / depressed folk!

Since going off my daily meds, I take Flexeril for muscle pain every 2-3 days. I like it because I don’t have to take it everyday and there’s no side effects if I DON’t take it, and the big benefit for me is it knocks me out at night. Not having that requirement to take a pill every day and multiple times throughout the day is incredibly important to me. I have had so much crap in my body for so long, it’s nice to only take pills when things get really really bad.

My head is so much more clear since going off the meds. There’s the good and the bad with this. I have reality in my face at all times. Who wants that? LOL! Honestly, my reality NOW, is so different than it was on those meds. I am doing a hell of a lot of self-talk, let me tell you! It takes a lot more to maintain a stress-free life in this new world.

… and did I tell you? Oh my gosh!! Stress is the daily devil I fight. Now, when I get stressed, my body retaliates like nobody’s business. Instant pain or instant headache or instant upset stomach… or my very favorite – instant emotional breakdown (ya gotta love those), etc. This stress stuff is no joke. Living and thinking like those professional “be happy” people is not easy. “Don’t sweat the small stuff!”, really? Live my life and let’s see YOU not sweat the small stuff. Sometimes the small stuff just gets me flippin’ frustrated and yes, I stress (I am human y’know). I am not saying it happens everyday, but it only takes ONE TIME and my body is like, “eff you! I’m retaliating!”. Don’t even get me started about what I would define as the “big stuff”. I think we can all agree, stress sucks.

Where was I… oh yeah, my head is clear – let’s not go crazy, I’m not ummmmm, “normal” like I once was pre-FMS (as is evident by my ADD writing you are reading right now). This is my new “normal”. I can do my job and feel pretty good about it vs. doing my job and wondering if I was making any sense a lot of the times. Towards the end, the drugs seriously, and I mean SERIOUSLY (in caps and super duper bold) fucked. me. up. (excuse my language but I need to be aggressive with this)! It still scares the crap out of me to look back on those last couple of months. I know I have harped on this, but I cannot imagine how many people are on drugs and the side effects are doing more damage than the actual illness they are trying to treat. That was definitely the case for me (can ya tell?).

I am ready to start with a different regimen. Exercise, good healthy food and targeted vitamins and supplements. I know this is not some crazy new idea – but for me those first two have always been challenging for me. It’s time I stop screwing around and really make a go of this.

I have noticed lately sugar definitely effects me nowadays. This is not cool. I mean seriously, I have the world’s craziest sweet tooth these days and every time I try to eat something sweet – BANG! upset stomach and a headache. Really, really, REALLY uncool. Fibromyalgia, depression, ADD and now sugar is a problem. Awesome.

I also tried the gluten-free diet… annnnndddd as my God-daughter says, “I think Godmommy needs the gluten back”. I actually was feeling worse… weird, right? I never said my stuff made any sense. It’s damn confusing to me all these different diets, vitamins, supplements, approaches, eat this-not that… ARGH!

Well, I would love to hear what you are going through and please share your experiences. It always makes me feel better to know I’m not the only one.

Thanks for stopping by! Stay cool!

Tamiko

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Detoxing – I thought I was okay… I actually had a migraine!

I am seriously thinking about…

the days when I never thought about being sick.

when I was young and everything new seemed so “cool”!

the days when my most difficult decision each day was, “What the hell am I going to wear today?“

what it would be like to live in a beach house and hear the sounds of the ocean as I go to sleep and wake up in the morning.

what my life would be, had I made different choices.

what choices I have at my age… seriously, what choices do I have?

without prescription drugs, what are the chances I can survive?

could I go a week without sugar?

what life in my house would be like without tv.

if I could reverse 3 choices in my life, what would those be?

what is love?

do I even know what “normal” feels like anymore? Is there such a thing? Will I ever feel it again? Did I ever feel it to begin with?

are dreams attainable?

is there such a thing as a perfect relationship?

are we defined by what we do? how we live? what we believe in?

does pain push me to depression or does depression push me to pain?

All these random thoughts come and go. Obviously not in any kind of logical way… let’s not forget “MY FOGGY BRAIN” is my name. They are all just random thoughts. Tonight is the first time I have actually thought about anything other than being sick in a long time.

I have been really sick. I didn’t even know it until this week. From my last post, I thought I was doing so well. I didn’t realize I had a migraine – and one that seemed to have lasted for weeks. I have been detoxing from Topiramate and Cymbalta and I took weeks to taper off the both of them. I noticed immediately the benefit of getting off the Topiramate since the suicidal thoughts and feelings went away immediately, suddenly, as if someone snapped their fingers and my brain just woke up – SNAP! Suicidal thoughts? GONE!

The Cymbalta on the other hand has given me way more problems, I assume this is why so many folks have found ways to provide their feedback – one way or another.

This past Sunday, and up until last night, I had this pounding headache, dizziness, nausea, sensitivity to light — I never put together that it all pointed to migraine. I just assumed it was a side effect from the tapering off of the meds and it would go away. I was completely WRONG on the “going away” assumption. Four days of this shit and finally I contacted my doctors. Last night I ended up at the doctor’s office receiving a Toradol shot in one thigh and a shot of Phenergan in the other thigh…. ummmm…. ouch! But let me tell you! The “ouch” from the shots was well worth the end result!

For the first time in months, I was able to actually SLEEP. You heard me. I finally slept for the first time in months! You fibromites out there know what I am talking about. Sleep? This is an enemy on most nights when we all want it to be our best friend. The best part of the deal? Let me say this really, really loud because I need to scream it from the roof tops… “NO FUCKING NIGHT SWEATS!” Whew! Glad to get that off my chest. I did NOT wake up 4 or 5 times in the middle of the night drenched in sweat and wondering what the hell just happened! I slept right on through. I didn’t just feel like I ran a marathon, no adrenaline filled dreams… I actually slept. Miracle! Apparently the night sweats I have been experiencing are related to the migraine I had? Very strange, but whatever. I’ll take it. As long as it stops or has stopped, I am ecstatic!

Here’s the thing… I was so used to having headaches, upset stomach, dizziness, completely active/ vivid dreams, night sweats… you get the picture. I didn’t think that it was anything more than the side effects of my illness(es). When I talked to the doctor last night and he was like “I believe what you are experiencing is a trigger migraine. You’ve had it for weeks.” I thought to myself… “NO WAY!” How could this be? So, it’s not specifically a side effect of Fibromyalgia, but it is a side effect of detoxing from the meds.

I took a leap and went in and tried the shots and it worked!

Of course it’s almost 3:00 in the morning and I can’t sleep now, but I’m okay with that since I don’t have all the rest of the shit going on inside me. There’s always a good and a bad to every life experience, right?

If you are having any of the symptoms I had and you aren’t getting treated for it … take it from me, see your doctor and push for help. I didn’t have to push, the doctor believed I needed help. Yours should too. If your doctor doesn’t help you or acts like it’s all in your head — GET A NEW DOCTOR! Do not let your doctor bully you or make you feel stupid. This is your health you are managing, not his/hers. I have said it before and I’ll say it again, “Take control of your health!”.

Thanks for stopping by, leave me a comment, I absolutely love to hear from you!

Stay cool.

Tamiko

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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

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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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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