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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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Eczema, Fibromyalgia, Chronic Depression & ADHD? Anything Else Want to Join This Party?

Let me tell you something funny. I thought I knew pretty much all I needed to know about Fibromyalgia. I thought I knew all the pain and exhaustion and crap that I was going to know that came with MY Fibromyalgia. Pretty funny, huh? Obviously I was naive and completely missed the chapter about the skin and the effects that FMS has on it. I admit it… I’m a dumbass. I have spent the last 3 days… one, two, three and let’s count today so this is the fourth day… itching like a dog dipped and rolled in fleas. If you could see me now… I have hives all over.

Pain+crazy itchy=psychotic mom. My dog Tani, also has some kind of crazy itchy thing going on. I want to do what she does. She literally walks and randomly throws herself on the floor, I mean this, THROWS herself on the floor and “THUD!” rolls to her backside and vigorously wiggles back and forth to scratch her back. I’m jealous. I want to do this. I know I sound crazy, but she looks pretty content when she’s done.

I gotta be honest, I think I’ve been pretty okay to live with. I haven’t thrown things around the house or screamed for no reason or even cried like there’s no tomorrow (although I’m seriously on the verge). I have pretty much just sat on this couch and played Facebook games on my computer. Non-stop. It’s the only thing that can distract me enough to keep me sane. Thank goodness there’s a new game to play as well… I can’t read or Twitter or watch TV. I can’t sit still or barely write this blog post. I’ve been trying to write it for the past 24 hours. Idle time for more than 10 seconds and I am scratching like crazy. This seriously SUCKS. I mean, I am ready to take any drug offered to make this stop. I am anxious and stressed and frustrated and exhausted all at the same time… AND in pain. How is this even possible?

If you could see me now….

It’s Wednesday and I just finished this post. I hit save and the page exploded before my eyes.

The login page comes up and I login and I come back and … it’s all gone. All my edits are gone up to the point where I had last saved. What do I do? Do I give up and just scream? Do I say eff it and just leave the post yet again for another day? (yes that is EXACTLY what my first reaction is) or do I suck it up and just finish it?

This is me sucking it up… so be nice! hahahahahaha.

So! It is Wednesday (I know I just said that, cut me some slack here) and I am still itching away… I found out the problem, I’m just not sure I believe it. On Friday, like a good patient, I had sent an email to my chronic pain doctor. On Monday he gave me a call and we talked about what the issue might be. He decided it wasn’t a reaction to my meds (good thing). He also thought it would be  a good idea for me to see my Primary Care Physician (PCP). I had a feeling this was going to happen. I still find it super cool that he even calls me to check in with me. Kaiser has such a bad reputation, the fact that he calls me, and first thing in the morning, and then tells me why he didn’t call me on Friday?? Awesome! The people in the Chronic Pain group…. they are the best! I can’t recommend the Level II Pain Program enough!!

I went in to see my PCP and she figures it’s chronic hives… I’m not so convinced. She’s thinking and asks me if I want to go on steroids. Hmmmm, how about NO! Prednisone? Hmmmm… HELL NO! Then she tells me she is going to have this “Roving Dermatologist” check me out. Cool. I’m cool with that. Sounds interesting and a good idea. We wait. I have my husband and daughter in the room with me. We wait. She comes in the room with my PCP (I just like saying that… funny how that acronym just happens to be the same as, well…. you know). Anyway, the Roving Derm and my PCP start talking and the Derm starts looking at my hives and asking me the questions, “when?”, “how long?”, “anything new?”, she wants to see where all the hives are and then she keeps asking me … literally over and over and over again… “did you use any new lotions?” me: “no” okay, “but, have you used any new lotions?” me: “ummmm, no”. It was almost as if she didn’t believe me. I guess she gave up after she kept getting the same answer. She then does this doctor speak with my PCP and pretends my family and I are not in the room. Riggghhhhhtttttt. This 6 foot black man is not in the room. I am thinking… “I wonder if I pinch her, will she notice?” and then I think… I better not, the consequences of that are probably not very good… and just as I finish with my thinking, the doctor bubble breaks and “PING!” we are all in the same room again. My PCP gives me my prescription and we are on our way. I like my PCP, but it’s always kind of a strange visit to me.

Steroid lotion and cream and Atarax. I start day 2 of this lotion/cream twice a day schedule along with an Atarax pill and so far it’s not really working, but I’m giving it a chance… because that’s the sort of girl I am! I don’t like to take the Atarax during the day. I have to get my work done so I will wait until it’s time for bed. This means I’m itchy all day… all I’m saying is… you don’t want to irritate me… you don’t want to irritate the irritable, right? Pass it on.

Okay and here’s the thing… Eczema, Fibromyalgia, Chronic Depression and ADHD?? Good damn thing I’m married!! I’d never find a man with all that shit! What I’m sayin’ is anything else want to join in this party?? You better come quick!! I’m closing the door to this gosh darn party, I’m lettin’ the door hit ADHD in the ass as it closes! This is bullshit!! I did not sign up for this, but I’m handling it. I’m takin’ it. I’m living with it and I’m not going to sit down and cry my eyes out. Try me, damnit!! Okay, maybe some days I’ll cry my eyes out… but not EVERYDAY!! These things do not make for the end of the world… they cannot kill me and I won’t let them kill my spirit. Right? Are ya with me?? Good!

I will say this though!!! 2000+ hits to my blog?? That is WAY TOO AWESOME!! When I first started writing this blog I never ever in my wildest dreams (okay now I am going a bit overboard, I don’t really dream about my blog, but you get my drift) thought that I would have this many folk read what I’m talkin’ about. I love the fact that people understand and get what I am talkin’ about.

You all have a wonderful and blessed day!! Leave your comments, I love to read them!

Stay super duper cool!

PS. I was chicken, you would have pinched her, right? :)