A New & Terrible Fibro Symptom 

Okay, maybe it might not sound so terrible when you put it on the list of all myother fibro symptoms but since it’s new I have to whine about it. 

My freaking mouth! My teeth and mouth and jaw and my stupid tongue too. I’ve had issues with my tongue since I was a kid. I didn’t understand why it looked like it had scars on it when I was young. It wasn’t until I was pregnant with the boy that my fabulous Dr. Macaroni told me I had geographic tongue. Now I had grown up having an annual dental check up my entire life, only had one filling, had wisdom teeth removed- and no one had ever told me that! But it made sense – I periodically seem to lose my tastebuds, my tongue looks like a road map and most recently my tongue is super sensitive to spice, heat, etc.  

But since I’ve gone off the morphine my teeth, my mouth and my jaw are aching so bad! I don’t think it’s an infected tooth – it doesn’t feel like that – it feel like every nerve in my mouth is exposed and raw. It’s so bad that my sleep has gotten even worse – I’m sleeping about 2 to 3 hours at a time and then my mouth pain wakes me up! What the cuss?! (Or how about – what the cuspid?! 😉) It’s quite literally a pain in the mouth. Thankfully I’m going to the doctor on Friday. Hopefully this will calm the heck down so I can get some sleep!  (This post was written at 7am after about an hour of sleep since 4pm the day before – so if it doesn’t make sense – well screw it) 

Advertisements

I Read This Today

…and it spoke so clearly to me. Trying to explain this fibro garbage to anyone is just not easy – and I think this passage says it better than I have been able to. The focus is on trying to explain fibromyalgia to your spouse – on that point, I’m so grateful. I don’t have to share this with Andy so that he can understand what I’m dealing with. My husband likes to torture me with jokes (the same joke over & over which he seems to think is hysterical) but has supported me and taken care of me since all of this began. It’s not always a smooth road for either of us and we are a normal couple with normal problems but I honestly couldn’t ask for a more sympathetic partner in this life. With God’s help we had waded through a river of shit before I got sick, but because we had already made it through that mess I truly believe it prepared us to deal with my illness. 

So here’s what I read on Twitter today – thank you to@breezabeach & @fibrobloggers for posting it. 

On Being A Drug Addict

I have fibromyalgia. I have some other things that have come along with it, but fibro is the main problem. This is not a new story. I’ve talked and written about my journey many times. I’ve talked about how I had a whole different life four years ago. How a persistent, deep, burning pain started in my abdomen that no doctor – and I have had many doctors – could diagnose. How that pain started in one small area in my guts and over the course of a month radiated out to the rest of my body. How I have had almost every test known to mankind and have tried almost every treatment. How I’ve changed my diet, what chemicals I’m exposed to, what type of shoes and clothes I wear and the way I move my body. How I don’t work any more, sometimes I sleep alot and sometimes I can’t sleep at all. Some days I can take the dog for a walk around the block, and other days I feel like I’ve run a marathon just emptying the dishwasher. How sometimes my skin feels like it’s on fire and the slightest touch makes me wince and retreat and how other times I need a deep massage just to feel okay for an hour or two. How if I sit too long in the wrong position my feet go to sleep, how sometimes my hands are numb and tingly, how my mouth is so sensitive now that even pepper can sting or burn (and this is a girl who grew up in Central California where Mexican food is the main food group!). How I walk with a cane now because my vertigo is so bad – and that also means I don’t drive any more. How I’m forgetful and I swear I’m losing my hearing – but maybe that’s just old age. How some days are awful, and other days I just call unpleasant. I wake up with a migraine several times a month – sometimes there’s a reason (weather, hormones, sleep, etc) sometimes there isn’t – I know, I’ve had to track this stuff. I’ve tracked my sleep, my migraines, my regular headaches, my diet, my hormones, my exercise, my pain, my blood pressure, my bathroom activity, how much water I’ve drank, the weather and what the dog eats. Shockingly, not that last one. But the most important thing I track is when I take my meds and how many I take.

That med thing – that has been an issue from day one. There is so much medication out in the world and some things have multiple uses and other things have specific uses. You can’t take some if you take others and you can’t take others if you take some. Because I have migraines I can’t take a certain type of birth control or my brain will bleed. If I take one type of medication with a different one, I have a high chance for a stroke. And oh yeah, I’ve found out I’m allergic or sensitive to all sorts of meds. One made me break out in hives so badly last October that I still have the scars and a few itchy spots today in May. Another makes me break out in a rash and breath heavy – not good. One makes me sick to my stomach and throw up all night – not so good either. We’ve yet to find a blood pressure medicine that doesn’t make me break out into a rash. So it feels like the medication I’ve been on has been a constantly moving target. One thing for my migraines, one thing for inflammation, three things for the fibro, one thing for stomach issues, one thing for my anemia, vitamin D because I can never seem to get enough living here (that was not a problem in California) even when I’m taking high levels of it, one thing for the anxiety attacks that started happening after this began, one thing for depression because – well, let’s be real, I don’t think I was that emotionally stable BEFORE all this began. And two very potent opioid painkillers.

The funny thing about that name “painkiller” is that if you have chronic pain it doesn’t kill your pain at all. Yes, it may dampen it some, but “kill it” implies that it’s dead and does not come back to life. Maybe a better name for them is “pain walkers” or “pain zombie makers”  or possibly “pain distractors” would be best. Because the pain is still there – just lurking about, right below the surface, ready to pounce as soon as that wishful thinking painkiller stops doing it’s job.

When the pain first began, I took the meds without much question. The doctor said these will help and they did – for a time. But the worst thing about these would-be-killers of pain is that the longer you take them the less they work and the more you need – but the more you take, the more likely you’ll kill yourself. And hey, that’s just not so good. If Prince accidentally overdosed – and I don’t know if he did or not – but if he did, I understand it. I understand hurting so dreadfully and just wanting it to be a tiny bit better so you can get some relief or sleep, even if it’s just for an hour. I know, without having any scientific data to back it up, that this has happened to so many people. They have some type of chronic pain – back or leg or hip or, like me, whole body and they’ve taken one pill too many, too soon and never woke up. Maybe they lost track or maybe they didn’t, there are times you just never know.

Because of Prince and politics, medication use in the US has been in the news a lot lately. And what you most often hear about are the people who are taking pain meds not because of chronic pain but because of the pain from an injury or short-lived pain. They took the pain meds and instead of dulling the pain, the medication dulls their senses and gives them a short term high.   And what’s true for those of us who are legitimately in pain is true for those who just want to get high – you have to take more and more to make it work, and eventually – because they are chasing that ever-elusive high – they either overdose or go on to more horrible things like heroine – and then that bitch is never off their back. (Honestly, stick to pot, kids, it’s far more enjoyable.)

I wanted to share that there are different types of drug taking stories out in the world and it seems easier for the news to jump to self-prescribers rather than those of us under medical care. And that may be because no one really knows what to do with us. There are no good answers for chronic pain in this world where we have so many different pills we could build a city of skyscrapers with them. The one thing that may actually help is marijuana but it remains illegal even for medical purposes in the majority of states – including the one I live in now. And because it is illegal in a majority of places there is appallingly little data on the subject.

Last year I talked to my doctor about going off the two opioids I’ve been on. One is an extended release medication and the other is for the acute pain (another word I find hilarious – acute. Please. Aawful would be more accurate.) I’ve known the risks of them from the beginning but when you are dealing with pain you really don’t care, you just want something to relieve it. And even though I had always thought I was tough about pain – listen, if you know me, you know I had three natural childbirths – as an all natural, no drugs and I nursed those babies for well over a year – during which time I’d rarely take more than an advil. Tough girl jumped straight out the window and ran down the street and left hurting scared wimp in her place to deal with the all-over, constant body pain. But the pills just weren’t working anymore. Or at least it didn’t seem like they were. I was still having pain every day, almost all the time and I’m the type of person who knows when to call the game. I’m not a “narrow path Bernie” here – facts are facts and if something isn’t adding up, well, it’s time to try something new. And it’s been four years. And even on the meds my life is summed up in that first paragraph – it just is. On top of everything, some of the symptoms I’ve been having could be attributed to the medication that’s supposed to be helping me. There’s a reason Mary Poppins said to take your medicine with a spoonful of sugar – because otherwise it sucks. The side effects to the medicine that I’m taking for pain can actually make my illness worse … okay. Awesome.

Let me pause for a commercial break about my primary doctor here – he’s been all in for me. He’s suggested pretty much everything we could try, he tells me the benefits and the risks and helps guide me into a decision. He has sent me to every specialist and made sure I’ve had two other opinions besides his own. I just want to make it clear – he is doing his job. He’s not just handing out medication to me like candy. He knows all the meds I’m taking or anything that’s been prescribed by other specialists. He was definitely in favor of me going off the opioids to see what we were dealing without the meds, and suggested I slowly wean off of the medicine.

I started gradually decreasing my extended release meds at the end of November and three weeks ago I had to make the final plunge and go off of it completely.

I’m not going to lie – it sucked. I’m sorry, let me say SUCKED in capital letters so you understand I’m yelling. Even though I had gone as far down as I could beforehand, going off completely was misery. And there were several times I thought I wasn’t going to make it and almost gave up. But once I had gone through even a little bit of suffering the idea of having to go through it all over again at some point would stop me cold and helped propel me through. All of my regular symptoms were heightened. If I’m normally at a 7 or 8 on the pain scale, I was pushing a good 11. Even my hair felt like it had the flu. I couldn’t sleep, I’d roll around and thrash in pain. My stomach started acting up almost immediately. My internal thermometer was broken, hot, cold, hot, cold again. I would alternatively want to curl up into the smallest ball I could make and then want to stretch out every inch of my body. I was short of breath, having panic attacks and weepy as could be – I was either crying over a baby on Chicago PD or because I was watching animal videos or because as loathsome as all of this is for me – can you imagine how hard it is on my poor, long-suffering family? It seemed like all my internal systems were shutting down to reboot my hard drive. But the reboot was taking far longer than I expected. I have no other good explanatory words to use other than it sucked. And even though now, every day is a little better than the day before, I’m certainly not at the point I was three weeks ago while I was still on the medication – so I just have to wait and see if this is my new normal or if I’ll continue to get a little better or what. I honestly don’t know what to expect.

And let’s not forget, I still have another med to stop using which will probably take at least six months to wean down, just like the first one did. 2016 – the year of the withdrawal. Great job 2016, you are an ass hat. But by having a really crappy 2016, I will no longer be dependant on the pain medication and then 2017 can be something else – dealing with this in a different way and there’s something extremely freeing in that, even if it’s also quite scary.

I wrote this today for a few reasons – first and foremost, it’s Fibromyalgia Awareness Day. And bringing any kind of light or voice to that is important so that maybe some day there will be a better answer than the none we have now. Second, this is probably the first time in the last three weeks I’ve been able to keep much of a thought in my head, let alone type it out on paper. I did most of this typing from my bed, but, hey, at least I was able to type. And third, I hope that I’ve given any person that reads this an alternative perspective on what being a drug addict looks like – 42 year old housewife (this implies I clean house, I don’t, so maybe just wife), mother, sister, daughter, aunt, friend, knitter, plant killer, sick girl who could use a smidge more understanding in the world and a whole lot less judgement and condemnation.

Touchdown! 

16 months! That’s how long it’s been since I’ve seen my home turf. Get me off this crowded hot stinky plane and let me get my feet on the ground! I need to breathe some good old fashioned smoggy air.  Bump bump bump. Creak crack snap – that’s this plane. I can feel the wheels going up and down – I can hear people walking up and down the little aisle. It’s a silly plane. It should be for kids to play on – after it’s been scrubbed – it would make a great playhouse. Or even a tiny house if there were no other people in here.  But for me right now? I’m over it. There’s a tiny newborn baby on this plane. Can’t be more than two or three weeks old. Poor baby – her ears must be miserable. Mine are popping just think of her little ones. She’s beautiful but I’m guessing there must have been a pretty good reason to put her on this plane with all these sniffing coughing sneezing people. 

Down go the wheels! I’m going to see you soon Mom! YAAAAAYYYYY!!!

Second Flight

oh this is a tiny plane! 2 seats on either side of a 6 inch aisle. Thankfully it’s just Phoenix to San Fran and I’m home! So they had a wheelchair waiting for me when I got off the plane and I was the first one on the next plane. Honestly, it was a good thing I did have a “driver” otherwise I’m not sure I would have made it from one side of the terminal to the other. I felt ridiculous getting wheeled around but it did help and for that I’m thankful. The poor lady who was pushing me had moved here from Iraq 3 years ago and the only way she makes money is from the tips from pushing wheelchairs all day – I didn’t even know I was supposed to tip a wheelchair pusher! Good thing I asked her a bunch of questions – I tipped her good. That’s a crummy job and she has 3 kids and goes to night school to improve her english so she can get a better job! How can I complain?  

I have a talker next to me on this flight. Should be interesting. Here we goooo!!!

Where am I today? 

Right now flying somewhere over the state of Indiana or Missouri or somewhere middle America. I’m on my way home! Yay for me! California here I come, right back where I started from! I’m singing in my head – thankfully for the rest of the passengers on this flight. Although the two men I’m sitting between may actually be able to hear the thoughts in my head – that’s how close they are sitting next to me. I usually only allow family members to sit this close but welcome to air travel in the 21st century – pack em in like sardines! And I’ll mention here on my blog since I can’t yell out in the middle of the plane – whoever is ripping the awful silent farts please stop now! I’m about to vomit on my tray table!  I’m afraid it might be the guy to my left. And where is the flight attendant? I need a coffee filled with whiskey please – pronto! (Yes, I do know it’s before 6am – see me? Yeah, that’s my I don’t care face.)

Before I got sick I used to love to travel. Planes, trains or automobiles. You name it, I was down. Growing up a rainbow girl (don’t know what that is? That’s another blog for another time) I started traveling the state of California on a regular basis. There isn’t much of California that I haven’t seen. Also less frequent trips to Oregon, Washington, Arizona and Nevada. We drove everywhere and occasionally took a plane. I’m an adventurer at heart. When the kids were younger and Andy was working weekends the kids and I would go on little day adventures. I think at times it stressed my two oldest out – not knowing where the final destination was going to be. And admittedly we did find ourselves in both East LA and Compton – but hey at least we can say we’ve been there. My ideal retirement is for Andy, Sam and me to sell the house, buy an airstream and travel the country. We can visit the kids wherever they live and then go on our merry way seeing the world. 

*side note. The flight attendant seemed flummoxed with the idea of whiskey in coffee. Here on US Airways I just mixed the drink I paid for. No tip for you dude.* 

Anyway, before the pain I could travel without having a drink at 6 in the morning. Now, not so much. Now these plane seats seem even smaller than normal (doesn’t help that my own seat is bigger than normal – oh dear Father, please, no more release of gas by whoever is in my area!) and every bump and jiggle of the plane is shooting pain. Honestly, it’s kind of sucky that my body is fighting my enjoyment because I am SO STOKED to be heading home to see my family and friends – and one poor broken into pieces, smashed up by a car friend in particular. I have to hit her with my cane for scaring me half to death. (I’ll try to hit a not broken spot). I have so many people to see and yet I know I’ll go home sad knowing I didn’t have a chance to see everyone. When you don’t get to come home very often, it’s hard to get everything and everyone in. People are busy! And I totally understand that. And I have a lot of family! I’m sure that’s understandable as well. 

Well, Irish coffee on an am flight before I’ve eaten anything is certainly smoothing out the edges some. I may hurt a bit more later and I may look at this post later and think – what an asshat I am! – but for now if I’m achy, I care a little bit less. 

I hope I don’t sound like a big fat complaining baby! I’m just being real about the pain but I don’t want anyone to think I’m ungrateful or didn’t want to make this trip. I wouldn’t have cared if they had to wheel me in on a stretcher and have stewardesses seranade me like in the movie Airplane. I would have come and suffered through no matter what! It’s been over a year since I’ve seen my family, my home town and the Pacific Ocean – there’s no way I would miss it. No. Way. Plus, the most amazing thing is this trip was a gift from my lovely, beautiful girlfriends. They are the most genuine, kind hearted, loves Jesus, care-taking group of women that I could possibly hope to have in my life. Janelle, Jill, Kelly, Sara, Andrea and my dear, sweet Kristin – thank you, thank you, thank you from the tips of my tippy toes to the top of silver haired head. I thank you for sending me home when you could see how much I needed it. I know you knew how homesick I’ve been feeling, I know you know how much pain I’ve been fighting. Thankfully I’m going to find a sandy sunny spot on one of my favorite beaches and plop myself there. When I see my mom and dad today, I’ll be thanking the Lord for each of you. And when I see the Golden Gate Bridge today, I’ll be thanking the Lord for all of you. And when my feet hit California soil, I’ll be thanking the Lord for each and every one of you. 

*another side note the guy on my right who I think is deaf and very considerate is falling asleep all awkwardly in the asile. Wish I could offer him my neck pillow but that would be weird and he would then have to keep said neck pillow because then it would be all other person germy.  Gross!*

You know what sucks on a plane? Being able to hear the earphones of the dude in front of you the whole trip. Seriously. Turn that crap down. I feel like doing him bodily harm with my purse. But I also feel like that’s something one of my own kids might do so I’m going to show some restraint. Oh no! Poor right side guy just jerked awake. Doesn’t that suck? I hate that feeling of where am I? Which is probably more disconcerting on a dark airplane. 

Here are three perks to being disabled on an airplane that have happened so far or are going to happen. 1. At TSA check in they let me go through a “special” easy way. No peek a boo at my body parts. Heck, they barely checked me.  2. They boarded me early before most of first class so I didn’t have to fight the nutbars squishing in to get to their seats. 3. They are going to have an agent meet me when I get off this plane to take me to my connecting so I can get right on and not miss it – because I only have about 30 minutes between flights. So woot woot on that! I’m also thankful there is no one sitting in the seat in front of me. I don’t need anyone reclining back in my lap!

Okay. Whiskey has officially kicked in. Taking a nap – hopefully I don’t snore and take in the whole plane. And hopefully this will post. Catch you later! XXOO z

* left side guys arm is hot and he keeps hogging the arm rest! And he started snoring.  Then. I heard a snuffly snort. I don’t know if that was him or me! Yikes!!

** this was typed in my iPhone. No edits were made. So I apologize if my autocorrect changed Molly to milky or Kelly to jelly. It’s a strange thing! 


I Believe In You

Those are four exceptionally powerful words. Separately, not so much – but when brought together like that, “I believe in you” they can change your life course. It’s not, “I love you and I think you are fabulous” – obviously, you love me, you should think I’m fabulous. It’s not “whatever you do, you do great” – that’s not my favorite line because that feels like it almost voids out everything – if everything is great, then nothing really is. When great teachers prove this phrase to a student – that they believe in who they are, that they can achieve, a student’s whole life can venture into a new direction.

If you who are reading this are one of my friends or family following me, you’ll notice that there has been a definite uptick in my posts. It’s a bit hard not to notice – I posted back in January of 2014 and then didn’t post again until my Breaking Up With Facebook post. If you’ve read that post you’ll know that I typed the entire thing on my phone (which resulted in a migraine – that could have been from the small screen or the emotional vomit or a combination, or the weather, or just because, honestly, who knows with me? I have like five migraines a month!) There was a part of me that I really hadn’t been accessing for awhile that broke free after writing that post. And after reading that first post, my husband said to me, “you have to keep writing”. I truly appreciate his support but he’s my husband after all – shouldn’t he support me? I guess he doesn’t have to, but he’s great like that. And once he said it, I could feel the tug in my gut to write more … just a bit more.

Later, after my sister read that first post, she texted me, “you should keep writing”. Now, just like with my husband, I truly appreciate the support – but both of these people love me dearly, (at least they seem to! ;)) they aren’t particularly objective. But what I do know about my sister, that is different than my husband, is she would stop me from embarrassing myself if I looked like an ass! And as she doesn’t want to be the sister of an ass – she would do that for both of us! My husband just doesn’t care what other people think so he would never think I was embarrassing myself. With a nudge of support from both of them, my brain started to write a little more often – my version of prewriting.

Since I can remember, I’ve been writing. Not always writing on paper – many did make it to paper, lots and lots of poems – but the writing in my head has constantly been there. Stories and stories have always gone through my mind. I’m a people watcher who makes up crazy worlds about strangers’ lives – this is great entertainment when I’m stuck in traffic, the other drivers are unknowingly living exciting adventures or have really messed up home lives that they are running away from. I make up the most bonkers of stories about my animals and what they are thinking and who they are when no one is watching. I think I’ve watched too much Toy Story or read far too much fantasy because in my mind anything can come to life and have a life – and it tends to be a dramatic one. This is the way I’ve always been. And, yes, I do know there is a very fine line between insane and creative.

When I was little my stuffed animals lived fabulous sagas in my mythical kingdoms. With all this “prewriting” and creating going on in my head, it also produced in me a very specific talent. I became a consummate liar at a very young age. I’m not joking when I use the word consummate – I looked it up just to make sure I was using it exactly the way I wanted to. I was a master liar, I was pretty fantastic. And let me tell you, for someone like me to say I was fantastic at anything – I promise you, I had to’ve been. I was quite convincing. Let me share with the blogverse one of my first really tall tales – I had already told much smaller ones at this point, but this was one of my first more elaborate ones.

When I was in the first grade I told my first really significant outside of my family “story” (lie – just depends on how you look at it). I was just six years old in first grade. I think of my own sweet children and how open and candid they were at six – it just makes me want to go back and appreciate each of them even more than I did when they were that age! They were so guileless and winsome. But I wasn’t.

In first grade we ate lunch alphabetically. I’m sure there was a good reason for this – easier for the attendance lady to check our names off, didn’t cause such a slow down as you were being checked in for lunch … something that made reasonable sense to adults. But in my six year old mind that was a bunch of baloney. You see, my last name started with an M. Normally that worked in my favor because my best friend from preschool to sixth grade was Sarah Maracini. M & M. We worked well together – and best of all we were in every class together for those first seven years of school. But Sarah lived across the street from the school, and her mom was one of those typical 70’s/80’s moms who liked us to eat natural peanut butter – she was into lots of natural stuff… but, that’s a different story.

Anyway, every day, she had Sarah walk home from school to eat her lunch, so instead of Sarah, I was forced to sit by Eddie Martinez! Now Eddie Martinez** grew up to be a great guy, but in first grade – I wasn’t haven’ him at all. Nope. Eddie Martinez called me Curtis Mathis on a daily basis. I already had identity issues because my mom thought all three of her daughters were better off having a haircut that was, in her words “cute”, in my words “boy”. Proof of this is when my brother looks at pictures of the four of us when were little, he refers to us as his three brothers. <sucker> Eddie would call me a boy’s name – Curtis Mathis and I would say back Eddie Spaghetti your meatballs are ready. This was our daily routine in the lunch line. It went on like this through elementary school because, like Sarah, Eddie was in almost all of my classes and Sarah always went home for lunch! Eddie got on my nerves.

My first grade mind decided to put a stop to this torture. I wanted to sit by my second best friend at the time, Amy Bennett. So I told my teacher that my parents were getting a divorce, my dad had moved to Hawaii and my mom was changing my last name to Apkins. Now, I had never seen the last name “Apkins” but I do remember thinking (and the fact that I remember this scares me since I can’t even remember yesterday) if I just took the “n” off napkin, I would get apkin – add an “s” and it sounds like a viable first name. My first grade teacher, Mrs. Starr, believed me hook, line, and sinker. Why wouldn’t she believe a first grader? Most of them are not big fat liars! Besides that, I had already learned to give some facts, but not too many because that would give away the lie (you see, I had been lying to my parents for years by this point, I had some major skillz).

Mrs. Starr sent me to the attendance office and I retold my story. The office staff said they would make a note and change my name but my mom would need to call and make the change herself. Here was the gaping hole in my plan – and it taught me a valuable lesson – you see, I wasn’t a long term thinker at this point. I learned you really need to look at the big picture and see where down the line you could get busted. This knowledge helped quite a bit when I was in high school. 

So there it was, the lie was set and I had a few amazing weeks – sitting not just next to Amy Bennett where I wanted to be, but also at the front of the line, where I always thought I should be. The front of the line seemed much, much better than the middle – let me tell you. I did not like to be in the middle, far too middlish. I’m a first born and folks, this girl feels she should be in the front of the line! No more Eddie Spaghetti. No more Curtis Mathis. No more middle. No more misery. 

But then one day, as I was sitting in my Brownies troupe that I went to after school sometimes. Happily doing whatever it is Brownies do, my mom showed up unexpectedly. I knew immediately – she was not happy. Actually, she was in a towering rage. And from my present perspective, I can tell you, my mom is a little lady – especially compared to me. I have at least three or four inches of height on her. But when I was six – she was towering. Angry energy was emanating from her every pore. And like most kids, I learned very early how to gauge my mom’s moods.

She tried to call me out of Brownies, and no, I’ll sit right here thanks. But she was insistent and even told my troupe leader that I wouldn’t be back that day. The tirade started as soon as we were out of earshot and continued all the way home and into my bedroom. I don’t remember every word, I don’t remember anything I really said to defend myself. But I remember the tenor and the gist of it all. The school had finally called to confirm my name change story. My mom was shocked. Of course I couldn’t really explain my reasons at that age. All of it is clear now, I knew what was going on in my head – but to tell her all of that – that would be too much insider information! I wasn’t into that at all. For someone who now is akin to an emotional nudist – at the very least, a flasher, as a child I didn’t want anyone tapping into my brain! I had way too many stories in my secret inside life. 

At one point, I remember her asking, “don’t you love your dad?” What? What the crap does that have to do with anything?? Of course I love my dad, I just wanted to get away from Eddie Spaghetti – and let’s be honest, Eddie was probably just as happy with the temporary name change as I was. My mom was thinking I had some deep-seated emotional issue against she and my dad and she was probably going to have to take me to a shrink. Actually, this lying thing wasn’t exactly normal, and maybe she should have sent me to a shrink, but she didn’t. I think she grounded me – I got grounded a lot (surprise, surpise) so that all blends in together. I do remember my teacher calling me up during “rest” time – yes, in the 70’s, first graders got “rest” time, lucky first grade teachers! I remember her whispering at me in the dark classroom in quite a frenzied way. I don’t remember at all what she was saying, but I remember her spit sort of stuck to the roof of her mouth when she talked. That sounds gross – but that’s all I got out of it. Looking back, I think poor Mrs. Starr was nonplussed having a child like me in her class. That wasn’t the last time Mrs. Starr was on the wrong end of one of my  “stories”. But I’ll save those, and maybe the time I sent out invitations for a make believe birthday party and kids showed up at my front door much to my mother’s chagrin, for another time – this particular story kind of got away from me. 😉

Back to the point of this entire post (if you’re still with me). A few days after I posted my first post back, my husband bought me a new laptop. After 8 years, our old one had decided to take a powder and I couldn’t write on it anymore. I have stacks of journals, but this format allows me to process in a different way than a journal does – and besides, I get to invite my family and friends into this world of mine for good or bad. And what’s great for my friends is they can choose if they want to come along on this journey or not. My husband gave me this new tool and said “I believe in you.”. My seriously introverted husband will hate that I’ve put this in a post – he doesn’t like me giving him internet attention, social media, blogverse, etc. – and I know what he’ll say. “yeah, yeah, hero to zero.” But he really put his money where his mouth was this time and that’s a big freakin’ deal in this family! And a big freakin’ deal to me.

Because of his faith in me, because of the constant encouragement from my very accomplished and extraordinary baby sister and also from my always supportive parents, I’m finding my voice again. I’m shaking out the kinks – which is probably very obvious if you’ve been reading – I’m different than I was a year ago. So currently, writing and sharing is back on the agenda. (Look’s like meat is back on the menu, boys!) And for the time being, my fibro is still the main topic – but you’ll have to excuse me if I just can’t stay on topic. I’m really bad at coloring inside the lines, and maybe at some point, I’ll start sharing some of these stories in my head. 

**To Eddie Martinez, if you ever read this – I’m sorry for calling you Eddie Spaghetti in elementary school.