Insomnia

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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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This Roller Coaster We Call Chronic Pain…

I have spent the last few weeks in a complete funk. I felt like shit. My flare kept me down. I had a difficult time overcoming my depression. Life was not fun.

Chronic pain is an interesting condition to live with… it’s like living on this ultimate roller coaster. Your life is literally going in these huge swings of ups and downs depending on the levels of pain you are in. YOU have to constantly be in control of your emotions. Everyone around you depends on YOU to constantly be in control of your emotions, your pain medication, your antidepressants (if you use them), your diet, your exercise regime, your sleep hygiene, basically every minute and second of your life. Let’s be real… this is just unrealistic. I know this… my chronic pain friends out there know this… but 99.9% of the people who live normal lives will never understand this. It’s incomprehensible to get this. Although they (folks without chronic pain) deal with it, they want a consistent “YOU”, not this sometimes  emotional, sometimes irrational/ erratic/ sensitive person. Sure we live in the straight areas of the roller coaster and we appreciate those times, but we all know that there are going to be the ups and downs.

Here’s the reality. The reality is, no one is perfect here. No one. Not us – the chronic pain people. Not them – the support people. We all have to understand this. So, there really should not be an “US” and “THEM” in theory, but in reality once again I challenge everyone to  think about this difference in groups. How do we bridge this gap? Is there a need to bridge the gap?

How do we better educate our family and friends around us? I still find it very difficult to talk about all the conditions I have. I don’t want people to feel sorry for me, I don’t want to get “that” look. I realize I need to be okay with how people react, their reactions are normal. I realize it takes time for people to accept and be okay with change. I want to educate people so they can understand the conditions that I have. I want people to understand that I am in pain everyday. Some days are better than others, but even though I look good on the outside (okay people I am not trying to say “I look GOOD!”, I’m saying I look healthy good), the pain I feel is real.

So, let me get back on track (good pun, huh? Sometimes I am pretty good! lol!)… I was on the down side of this roller coaster and I was falling fast. I had no sight of things getting better and I really felt like the pain was going to keep getting worse, my stomach has been upset, I’ve been using my cane, my depression has been bad… that dark cave was getting smaller and smaller. I was trying to find ways to get out, but I didn’t feel like I had options.

I have been praying and I pushed myself to spend the 4th with friends and family and you know what? That dark cave opened up and the light shined through. I allowed myself to just relax and my husband and my kids took care of me and I enjoyed time with old friends and family. I had a fabulous time! I am not a social bunny (understatement of the decade). I generally do not like to be around a lot of people, but I had a really nice time. When my pain got to be too much, I looked at my husband and he knew exactly what I needed and we said our g’bye’s. We came back to the house and rested for a bit and while I rested my husband took Tani out for a run and then we all went next door for the annual fireworks and then back home for the night. All in all a great day to bring some well needed light into my life!

Sometimes, it just takes the simple things in life. Some friends to light up your life. Say “YES” to the invitations to go out, even if you stay for an hour. You might be surprised by the smile on your face when you leave. Wear something easy and don’t be hard on yourself about having to look perfect, people want to see YOU! I have missed out on many opportunities and I am sorry for that. I can only hope to work harder at this.

Also, let’s find ways to better educate those around us, and remember we aren’t all perfect… it’s just not possible. Let’s find a way to bridge this gap. The responsibility is on us, we are the ones with the medical conditions and we have the knowledge. Let’s find better ways to share in a user-friendly way. If you have ideas, please share with me.

Thanks so much for stopping by! Stay cool!

Tamiko

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Maybe There Are Just Too Many Maybe’s… Making Decisions With A Foggy Brain

Let’s say, for instance, you have to make a life altering decision. How do you go about thinking through this decision? Do you talk to your friends? Do you go in a dark room and think, think, think? Do you sit down and make a list of the pro’s and con’s? Do you talk to your counselor? Do you talk to your significant other? Do you talk to your dog? parents? What do you do?

Let me give you an example. You have the option to make a change that will make a significant difference in your income, your social life, even your daily life and will cause you to go through some pretty major positive and negative stress. You can either make this change OR you can keep  going in the life you have. The life you have is not bad. You make a pretty good income, you work with some of the best people on earth, you have some pretty major stress.

So, what’s the problem? Well, that was just an example. My question still remains. What do you do when you have a problem and you need to think it through? I struggle with this all the time when I have issues. With a foggy brain, when I try to figure things out… well, let’s be honest… I don’t get to the “figuring out” part. I start to do the research, but I have a difficult time reading through the policy jargon. The stuff that used to be so easy for me… this is the shit that I used to read through and help OTHER people understand. Now I’m the one that can’t figure it out. What. Happened. To. Me.

I have my good days when I can be a Lawyer! Of course these are my husband’s worst nightmare days. He should really pray these are the days he doesn’t get into an argument with me… because if I’m feeling good, I’m probably going to really want to use my brain! (God help him!) These are the days that I will willingly work 16 hours to get through as much email and paperwork as possible. I can process stuff very quickly vs. the normal time it takes. Quickly. This is how I used to work in the late 80’s and 90’s and early 2000’s bcp (before chronic pain).

I can remember those days. I used to work 16 hour days… everyday. I used to work 6 days a week… every week. My life was work, work was my life. Hmmmmm, I don’t think I should look back on those days and say “those were the good ‘ol days!”. There were definitely some GREAT days! I had a lot of fun working, I learned a hell of a lot… but I gave up a hell of a lot as well. I am certainly paying the price now. People still expect the same output or I should say, people would still like the same output. I also expect myself to be able to work like that. I still push myself to work those hours. I don’t know how to work an 8 hour day, stop working and then figure out what to do the rest of the time. Well, let’s be real here… after those 8 hours, I’m pretty much useless. BUT, IF I had energy after 8 hours, what would I do? I have no idea. There is so much to do… where would I start?

My problem is… I have so many things I want to do, I am overwhelmed. If I wasn’t working at all, where would I start? Where would I stop? How would I prioritize? The thing is… why think about it at all if there’s no chance at the moment?

So… again, I have this question about how to make this big life altering decision. I have this damn foggy brain. I have all these questions in my head. I am completely overwhelmed. I know there are all these processes you can use to make decisions… and well… I think when it comes down to it… maybe I’m just not ready to make this decision. Maybe I’m afraid. There are just so many Maybe’s.

Maybe. Maybe. Maybe. Maybe. Maybe I’ll figure out what I want to do soon.

But for tonight… I think I’ll go to sleep… and maybe, jussssttttt maybe, when I wake up I’ll have an idea of how to think through this decision!

Y’all stay cool! Thanks for reading…

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A Simple Post: My Fibro Journal Template… Use It & Track Your Daily Progress… YES I SAID PROGRESS!!

Hi everyone!

I created this template based on the 10 week Level II Pain Program I took at Kaiser and I have used it every day for a month. It has helped me remember to take my meds, really understand my sleep (lack of sleep), how my pain goes up and down, when and how often I flare and… when I talk to my dr… I can actually speak factually (what a concept)!

Try it, tell me what you think… these are just pictures. I posted it a couple of weeks ago, but I thought if I showed you what the pages looked like, you would be more apt to try it out. :) You can download the template in my Awesome Resources tab.

If you are not tracking your progress… if you don’t use my template… create your own or buy one or do something! It’s important so you can see your PROGRESS!!!! Even if it’s small, you do progress. Even if it doesn’t feel like it… you are making progress. You will have bad days… but you will have GOOD days. Journaling forces you to see the GOOD!!

Okay, I’m off my soap box. :)

Thanks for reading and have a super cool and pain-free week-end!

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

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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? :)

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I am Flare Free!!! This and my Journey with Fibromyalgia the Last Few Weeks

I have to tell you… I have started this post and others many times. It is now May 16th and I am happy to say that I am flare free. Did you hear me??? FLARE FREE!!! Uh-uh. No. Don’t just read that sentence like it’s nothing. Read it again… Say it out loud with me. Wait a minute, Let me make it easier for you:

I   A M   F L A R E   F R E E !!!

I actually feel good. I can’t believe it. What the hell is going on? I’m not complaining or anything, but seriously, what the hell is going on? I like it! The timing is great! I need the energy to get through the next few weeks to get shit done. I hear you, PACE. I know. I am learning. Every day I am learning.

What I’m saying is… it can happen, I went from excruciating pain to feeling good. My medication is working. My exercise is working. It’s not magic. It’s not a miracle. It’s work, it’s what I learned from Physical Therapy, Counseling and research and most  important it’s about being consistent! Don’t give up. Each and every day I have to remind myself that it takes positivity and work to create change. Some days it takes more positivity than others… “This too shall pass” are the words I meditate by on those days. I deep breathe and on the in and out, I say those words and with each breath I get a little bit calmer.

This last 6 weeks has been a super-duper challenge for me. I thought I was going to lose the ability to walk and was starting to wonder about the use of my hands. Very scary. Noone can understand the fear this creates in the brain of a fibromite. I am feeling really blessed to be able to walk without my cane for an entire day.  I’m excited to be able to go to my son’s High School graduation in a couple weeks and not have to worry about being completely out of it. I can walk without everyone asking me what happened! This. is. awesome.

I understand tomorrow is not promised. I understand tomorrow I could wake up and not be able to walk. I have not lost my marbles (well that can be debated, I know! :)). Today is a great and awesome day. I am going to enjoy it. I am going to appreciate what I have. If tomorrow is completely different, I will deal with it when it comes. For now? I can walk and I can do what I want and I LOVE it!!

You all have a beautiful week and thank you so much for stopping by! Please leave a comment and let me know how you are doing.

Stay cool!

PS. I started and stopped the two posts below and never got around to posting them, I thought I’d include these posts with this one since it’s all a part of my journey…

Wait Do I Really Have Fibro?

It’s May 13th… April 9th is when it started. That is the day I woke up to the most horrible FLARE in a long time and I am praying tonight that it is finally coming to an end. Today was the first day that I woke up and felt human. I had one of those days, you know what I’m talking about — you wake up and you think “Wait, do I really have fibro… I’m feeling really good right now!”.

I felt so good I didn’t want to admit it to anyone. I didn’t want to say it out loud. I didn’t want to even whisper it. I did, however, say to myself “Today’s going to be a good day!” over and over in my head. I believe in the power of positive thinking.

You have to understand… stay with me for a minute.

  • For the last month I haven’t been able to stand up in the shower, wash my own hair and to get really personal, on most days I needed help to wash my own body.
  • I haven’t been able to walk without my cane. Walking with my cane, making it around the block would be an amazing feat!
  • I haven’t driven myself anywhere in so long, it’s amazing I even know how to drive anymore!
  • Just this week… I was in a wheelchair on Tuesday so I could participate at a conference with my colleagues at work. A wheelchair. Let me say that again… a wheelchair. Once more, a wheelchair, and let me say I was the first one to use it AND I borrowed it from a woman in her 90’s who is in WAY better shape than I.
  • Just yesterday, I was in tears I was in so much pain before going to the office.

All of a sudden today, I was able to walk without my cane and I was able to get through most of my restorative yoga class and it’s the end of the day and I now definitely feel the pain, but I’m still okay. This pain stuff is just crazy. So, all I’m sayin’ is… the FLARE better be gone! It visited for over a month, it’s definitely time to go!!

Things are about to get really crazy around here… and I mean crazy. PACE is going to either be my best friend or my enemy. I guess that’s the real definition of FRENEMY. Lord have mercy. Did I really just say that? Seriously. I need help. I mean mental help, I’m starting to lose it. Okay, so I already lost it… so that just means I don’t have to worry about losing “it”, right? If anyone finds my “it” anywhere… just send “it” back to me. I don’t know what you’d want my “it” for anyway, you can see by the way I operate, my “it” is not in very good condition!

See how easily I am distracted? FOCUS! Okay so! I have a lot coming up in these few weeks, I don’t have time for a FLARE.

Day 25 of My Very Intense Flare…

I will apologize now. I am not the most upbeat today. It’s Day 25 of a very intense flare. One of the most intense flares in, wow, SIX months! Just looking back through my posts, I thought it had been much longer, but it’s only been six months. I am now feeling just a little bit worse. I am going to allow myself to feel like shit for just this moment so I will hopefully feel better by the time I get done writing this post. It’s getting very difficult for me to keep it together minute to minute, hour to hour, day-to-day as this flare continues.

This flare is different from before… very different. For the first time in the history of my flares, I cannot get enough sleep. I am tired all the time. I mean, I am exhausted when I go to sleep, when I wake up, when I eat, when I work, when I breathe… just when. On Monday when I went to the dr., he got it. Exhaustion from pain. This time is different. I am in level 8-10 pain 24 hours a day, 7 days a week… every second of the day… and it makes me tired. It makes me frustrated and it’s starting to make me really angry. I am really, really, really trying not to let this shit take over my life.

Today was the day I hit the wall. If I had the strength I would have beat the shit out of the wall. I have taken a vacation and not been able to walk, I have been to a wedding and not been able to dance, I have been to the beach twice and not been able to walk to the ocean… for me? not walking to the ocean is actually a first… I should not whine, it’s a blessing that I can walk at all. It’s a blessing that I am able to go to the beach and I was invited to a wedding… a beautiful wedding with some great people and I got to watch my son dance all night, it was the best night ever! What the hell am I complaining about? I’m not complaining… I’m not.

I believe what I am trying to say is… I am tired. I am in a lot of pain and it is hard to deal with. Some days are harder than others and today is one of those hard days.