The Lion on the Stairs

I have a few memories from my early childhood years. The problem with a few of them is I'm not sure if I'm remember the event itself or the photo of the event. For instance, I remember my parents looking for me all over the neighborhood, frantic, thinking I was lost. I was upstairs in my room having a tea party. I saw them, heard them, looked out the window, but for some reason the thought to say "hey, I'm up here" wasn't something that dawned on me. I don't believe I was being malicious, just I heard them and went oh ok, and back to my business.
Another memory is one of those photo memories. We had a dog, a toy poodle. Pierre, or Lucky Pierre as my dad called him. I believe mom had other names for him as he preferred to pee on the floor in our back room rather than outside! I remember being in my white confirmation dress and Pierre being in the pictures. So, it's not really the event I remember. I remember the photo.
I wonder what a shrink would say if I told them I still remember a recurring nightmare I had when I was 5-6. You realize this was over 35 years ago, right? We had a two story house and in the dream I was on the stairs spying on my mother and her friend in the dining room. And somehow there was a lion crawling up the stairs to pounce on me, my mother oblivious to me, the lion or to my imminent danger. Talk about a prelude. My mother.
One of my earliest memories is me asking my Grandmother why my mom hated me. Mother has never been good with honesty and she's not going to like me writing this, but these are my memories. She says I was jealous of my brother. In one way I've never felt a moment of jealousy towards my brother. In another way maybe, but not in the way she means. She means that he was brought home from the hospital, became the center of attention, and I was jealous. No. On the other hand, anyone who was ever close to my family can and will tell you Brian is her favorite. To this day, he is her favorite. My dad repeatedly said "it doesn't matter what Michele does, from the moment she enters the house till the minute she leaves, it's wrong. her hair, her clothes, her friends, nothing is right". If I was jealous it was because he did everything right in her eyes (no matter what he did wrong), and I did nothing right.
Many would say my dad had a favorite, daddy's little girl. I'd have to disagree. I'd say he had to compensate.  He had to play peacemaker, keep her away from me. My uncle told me one time that all parents have a child they pick on, for him it was his daughter. I don't know if this is true (whether he picked on her, or whether all parents have a kid they pick on). What that statement meant to me was her actions were visible to others, they were confirmed, not just in my head. A few years ago I realized in a way my brother needed her more. Sometimes I think parents have a six sense about this, I've seen it in other parents. They favor the weaker child. I'm very independent, I needed my mother sure. Don't we all, but not in the way my brother did. Trust me I'm not excusing this behavior, it's just something I have witnessed.
I want to say some things changed for me when I went away to college, but more after that when I moved across the country to California. One day I was on the phone, I called the house to talk to my dad and she started yelling at me. I hung up. How liberating was it to realize I was several thousand miles away, I didn't have to listen to it anymore!
I'd had other realizations in the past. Maybe the first one was in high school I was assigned a paper in lit class on mental abuse. Suddenly the remarks "you're fat (all 114 lbs of me) no boy is ever going to like you", and more became all too real, I can't tell you other comments, I don't remember others. What I remember is having a private meeting with my teacher because I didn't think I could finish the assignment. My tears, and her understanding, what a wonderful teacher. True, mother used many of dad's belt buckles, and broke enough wooden spoons she eventually bought a pine paddle and used that and plastic spoons. Trust me plastic hurts even worse.
When I was about 16 I ran away. I'm not sure exactly when. It had to be during my senior year of high school. The summer between my junior and senior year I had gone to a summer immersion Spanish program at Eckerd College. I was going to my friend Debbie's to hang out, my mom was giving me a ride. Now Debbie lived a few miles away, and she didn't really know the name of the streets and neither did I. She gave me directions like "take the second left, then turn right at the first road". I hung up the phone and my mother said "you didn't get the names of the streets" and backhanded me across the face, bruising my cheek. This was a first. Her signature move was digging her fingernails into your arms until they bled, but punching in the face was new. I was hurt and shocked but didn't run away.
Two days later I came home from babysitting. I tried to go straight to my room and avoid her but she had other plans. She stopped me and said "Debbie called, and Jordan called". I started to walk away. She called me back "I'm not through with you yet. Your father and I are getting a divorce and it's all your fault". My fault because she hit me across the face, because she was out of control. I went to my room, afraid she would come to my room I climbed out of the window and walked about a mile to the nearest pay phone. I called my best (and still best) friend to come pick me up. She did. Her parents had me call my dad at the bowling alley and tell him where I was. He picked me up, I'm not sure where we went, but we went to some little diner and talked. He said they were getting a divorce, but it wasn't my fault. He said my mom had mental issues.
I don't know what happened but they did not get a divorce.I spent the night at Debbie's. The divorce was never mentioned again.
My parents met New Years Eve, got knocked up circa Valentines Day, engaged Easter, and married Memorial Day. I think my mom blamed me for her life. She married someone she barely knew, at age 22. A life that wasn't easy, my dad drank in those early years, and she blamed me. She took it out on me. If not for me she would not have had to get married and would not have been stuck in that life. They fought, mostly about me. Eventually, after I moved out of the house, they came to be in a happy loving place, and had a happy marriage. My mother and I, we've never come to that place.
We don't speak now. In fact, my family doesn't speak to her. I've spent my entire life trying to get her to love me, to accept me, to get her approval. Eventually you have to come to the realization that this is not going to happen. I don't think I'm there yet, don't tell my husband but I think deep inside me there is a little flame of hope that refuses to go away. For him, it's simple. The last time she hurt me was the final time for him. He said "that's it! we are not doing this anymore. I am not coming home to find you in tears over her. We've done everything we could. When she was evicted from her house my mom, and I, plus our entire moving crew (plus my cousins) packed her house and moved her stuff into storage, it's never enough for her. I won't see her hurt you anymore. She will not email you, call you, or even facebook you. I'm done". So we're done... for now.

My biggest fear as I went to college was she would start picking on my brother. She had begun to before I left. My father told her if she did he would leave her. I think this may have saved my brother.

Addiction, My Brother, My Family...

Funny, I don't remember a lot from my childhood. I'm assuming this is because I have blocked it out. I know we all have issues stemming from our childhoods Mine are better than some, worse than others. Some people were abused less, some more.
My actual first memory is of my brother when he was brought home from the hospital. My mother had him on the changing table in his room and as little boys do, he peed on me! Ah prelude to what follows, lol! A few years later I paid him back by accidentally burning his leg. I was about 5 and he must have been 2. I decided it was a good idea to make my parents breakfast in bed. My brother wanted to be helpful and put a paper towel over the pan. ON A GAS STOVE. The problem wasn't that I was trying to make breakfast, the problem was I talked him out of telling our parents about the third degree burn on his leg for quite a while.
Until recent years I have had a good relationship with my brother. Even now, we really don't speak, but this is not borne from a disagreement or problems between us. The separation is entirely induced by me. You see my brother is an addict. Alcoholic, drug addict, whatever you want to say. He's not into crack or heroin, more like xanax type drugs. Frankly, I miss my brother. However, I miss the brother I know, not the homeless looking addict he has become. This person is a stranger I don't want to know, and can't have in my life, it's too painful.
The addiction started in his teenage years, smoking pot. I'm not for or against pot. I've been known to partake once in a great while myself. Honestly, if you have fibromyalgia a single puff or two stops muscle spasms immediately, and helps you sleep. The problem is it can be what they call a "gateway" drug. I hate to say that. Because it's not for me. Still, I know other people who smoking pot has lead to harder drugs, and we've had a lot of issues with drugs in my extended family with drugs, both in the past and in the current tense. I don't have a problem with a little smoke once in a while, but the other stuff, it just takes control of your life and ruins it.
So my brother was brought home once by the cops, busted smoking pot. I think he had to go to counseling then. What I don't understand is why he started. Maybe it just seemed cool. My dad never abused us and he was mom's favorite, he never did anything wrong in her eyes. Bad grades, busted for pot smoking, whatever, he was still mom's golden boy. She never abused him, what did he have to escape from?
After high school graduation he attempted junior college, but it really wasn't for him. He started out young as a telemarketer in my dad's business and eventually worked his way to manager. Groomed by my dad. I know he and dad would go to lunch and Brian would have 2 or 3 beers. Mom and I begged dad to talk to him about this, as he'd go home after work and drink another 6 pack. I think dad did talk to him a few times but my dad had his own drinking demons from his own youth.
I don't remember much about those times. My mother always says I think my dad was perfect. I know he wasn't, I remember being young and being drug out of bed in our pj's to go with mom so she could drag dad out of some bar. I don't know when he got smart, and straightened out, but the point is eventually he did. My brother is almost 40 and he never has.
Brian really went off the deep end after my dad passed. I don't know if he blames himself for losing the business, or if that is just the excuse he uses. I can tell you though, the business closing wasn't his fault. The home improvement business was on it's way downhill when my dad passed, who knows the stress could have even added to my dad's stroke. This was a crucial time for my brother though. He started drinking heavily, then he started working for a guy he met in a bar who introduced him to drugs. During this time he was diagnosed with depression and anxiety, given his first prescription and introduction to xanax. Sure, xanax is helpful, trust me I've been in the throes of an anxiety attack many times. But xanax isn't helpful when taken 3 or 4 at a time with alcohol! This is the addict.
Eventually he lost his family. He's not allowed to see his kids, and if they were my kids I wouldn't let him see them either. My niece doesn't remember him, he's been gone from her life since she was about 2. My nephew hates him. I can understand that. As a kid I would feel abandoned. I would feel like he made a choice, and I believe he did. I know addicts will tell me it's not a choice, it's an addiction. But don't you make a choice to get help? Doesn't a cancer patient make a choice to get help?
My mother took him to AA, she's still heavily involved in al-anon. My husband and I took him him several times. One time he had been living on the street, sleeping under bushes, eating at soup kitchens. Another time I found him on my doorstep. He asked me to take him to jail to turn himself in for a dui. He spent 3 months in the local jail. When he was released my husband and I took him in again. The rule was no drinking. The first thing he did was sneak a 6 pack of beer in the window of his bedroom. Not too much time before he started getting slightly abusive with me. Not hitting, and I don't remember specifically what he did, my husband probably does. I do remember Steve picked him up by his shirt and threw him out.
Now a days I haven't seen him in a few years. I have friends who have run into him though and they tell me he's still super skinny, and still looks like a homeless person. I wish I could say I have hope for him to realize he has a problem but I don't. One of these days I will get a phone call that he is gone.

I’m a Spoonie, are you?

First I want to apologize to everyone for not writing in so long. I’ve been saving my hands for other ventures, mostly watercolor painting.

Today, thanks to Twitter, I discovered a brilliant mind. Christine Miserandino is the author of The Spoon Theory. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Daily we deal with the “but you don’t look sick” or “why can’t you?” or even worse “you’re just lazy”. Christine’s best friend asked her to explain how she feels on a daily basis. Christine thought for a while and handed her a bunch of spoons. Everyday those with illness start off with so many spoons each day. Some days we may have more spoons, some days less, but each day we start with “x” amount of limited spoons. Spoons = capabilities = tasks = energy. Today, I got up. This cost me a spoon. In fact, I didn’t get much sleep as I was awaken after only five hours. This costs me another spoon. I got up, went to the bathroom, threw on some clothes, brushed my teeth, and made a bowl of cereal. This cost me a spoon. I hung out with my neighbor and painted a picture, this cost me a spoon. I made dinner, another spoon. I may only have one spoon left, I’m saving it in reserve as I’ve been sick all week. After all, I don’t want to borrow from tomorrow’s spoons.

If I stay up to late watching tv I will be nauseous, and hurting, so I might lose my spoon yet.

I think I’ll look for a silver spoon ring on ebay to remind me to always count my spoons, how about you?

Technorati Tags: spoonie,@bydls,Christine Miserandino,lupus,fibromyalgia

Dazed and Confused - In the GROCERY STORE

To be totally honest I’m not sure if I should be sharing this with you, or why I am, but I gotta let it out somewhere. I went to the grocery store tonight, my typical Friday night event, grocery list in hand. Remember that, grocery list in hand because it’s important. When suddenly I’m just confused. Confused about what I’m supposed to be doing. I mean in the grocery store, with the grocery list, and totally lost and confused as to what I’m supposed to be doing. I wander around for about half an hour trying to figure it out, panic starting to burble up inside of me like acid reflux.

I decide to call my husband for a rescue, mind you I’m all of a mile from my house and it’s straight down the road. But, my cell phone is in the car charging so I decide to just leave. I paid for the two measly bags worth of stuff I did manage to grab before totally losing my marbles, and maybe a few things during the mental state I can only refer to as extreme stupidity.  I walked out, threw the stuff in the trunk and hesitated for a moment about driving home. But, I was feeling lucid and like I said it’s only a mile straight ahead.

I came home, left the two bags in the trunk. Opened the door to my husband asking me questions and wondering why I’m mad at him for some reason. Babe, not everything is about you. I ignored him and just crawled in bed, pulled the covers over my head and cried.

I know this is what fibrofog is all about, but damn, it doesn’t make me feel any less stupid.

Mystery Continues

I went to a new rheumatologist on Wednesday, Dr. Youngblood. She seems good and bad. Bad because she doesn't believe in fibromyalgia. But, in a good way. I know that makes no sense at all. She believes that there is always an underlying reason and that doctors are too lazy to dig. I hate going to the rheumy. I mean who with fibro doesn't? Getting poked and prodded and asked "does this hurt?" Um just count the "OW"s. Who knew my ribs were so tender? or, my right hip? Apparently, not me. I don't need all my fingers and toes squeezed to see if they hurt, I told you that. Damn, the toes on my right foot still hurt! Actually, I am just finishing my second cold of the season and it's set off a massive flare so everything hurts. Back, shoulders, arms, down to my fingertips aching. Hips aching. Left back (I always say shoulder because it's the area that surrounds the shoulder blade but the doctors keep telling me this is my back not my shoulder) is just throbbing incredibly through to the front and down the left arm.
Back to the doctor. She seems thorough. She ought to, she had both feet, both hands, lower spine and t-spine all x-rayed. I swear it was at least 12 x-rays, plus the blood. Seven vials of blood. With my veins that took a while. Three hours and six prescriptions later. Granted, the prescriptions were all refills of my diabetes, thyroid, blood pressure, muscle relaxers, plus some topical thing. She thinks this is all due to some inflammatory arthritis, possibly lupus, but more likely an inflammatory arthritis. I go back in two weeks for the results. Right now though, I've got to see if a sleeping pill will help, as you know it's near impossible to sleep in this kind of pain.

I WON!!!!

So a few days ago I was out walking the dog, and grabbed my mail from the box. A typical day, right?? NO! I received a letter from a return address of SSA ODAR. I almost dismissed it as junk mail. Upon further inspection I found several pages of legal jargon of which I understood few words. I thought I understood the following words though..."Fully Favorable". Now, this couldn't mean what I think it means, could it? I mean I ONLY applied 2 years ago and I haven't even had my court date yet. However, I do remember my lawyer saying something in October about asking the judge for a directed decision. Before I start assuming what this means, and jumping up and down, as obvious as the meaning seems, I decide to call my lawyer.
The lawyer's assistant confirms this does indeed mean I won, and without ever stepping inside the courtroom, yay me! Next, I conference called my husband and best friend to tell them. I could barely speak, I was crying so hard! Relief, affirmation, mostly relief.
In reading the judges ruling I kind of felt like the judge was saying "WTF are u wasting the courts time for?" and not to me. He cites my doctor's opinion, of course. And, he also cites the opinion of the medical examiner Social Security sent me to. Their own doctor "indicated that while there were some conflicting examination findings with regard to the claimant's neuropathy, the results of the nerve conduction study were compelling and highly reliable. Because Dr. Freeman reviewed all the available medical evidence of record and provided a detailed explanation with references to the evidence in the record to support his opinion, and he is a medical expert who is familiar with SSA policy and regulations, the undersigned grants significant weight to his opinion".
See, doesn't that reek of "your own freakin doctor said she is impaired, why'd you deny her in the first place???" LOL If that doesn't say it for you maybe this will... "The State agency medical consultant's (the people who read over your paperwork (or more likely DON'T read it) and deny you) physical assessments are given little weight because other medical opinions are more consistent with the record as a whole and evidence received at the hearing level shows that the claimant is more limited than determined by the State agency consultants." :) I love that. Other than the two words "fully favorable" those are my favorite words in the entire ten pages.
Don't you love getting your medical records and learning new things about yourself? For example, one of the specialists I saw said to me "what are they (as in my other regular doctors) doing for your B12 level being so low?". I said "it's low?". end of subject with that doctor. But, I did notice in all this legal mumbo jumbo of paperwork it mentions "the undersigned finds that the claimant's impairments medically equal listing 11.14 and 11.16." Of course I had no idea what this meant so I used my favorite search engine, Google, and, well, Googled it. These are listed in what they call "disability pararegs". 11.14 is for peripheral neuropathies. 11.16 is for Subacute combined cord degeneration (pernicious anemia). So nice for my doctor's to tell me about this, LMAO. I am not worried about it, it doesn't sound like anything big deal, although it is listed in the pararegs as a condition for which you can get disability, so that implies it might be something I want to mention next time I go to my doctor.Right now though, I am just to happy.
I'll have to expound on this more later as my fingers are really starting to not only ache but have bad sharp pains, and my knuckles are really swollen. I am so going to pay for this post, but to tell you I won, it is almost worth the pain.

When All Else Fails There's Always Twilight

I caved. I finally made an appointment with the psychiatrist my doctor recommended three months ago. I can't turn off my brain to sleep unless I am exhausted. Other times it's not my brain, I feel like my skin is crawling or I'm uncomfortable in my own skin. I'm up and down 3, 4, 5 times. I will lay in bed with my eyes closed, sleep mask on, snuggled up to my dog (she's a living breathing teddy bear)for hours. Then I get up and watch a half hour, 45 minutes of tv, lay back down. Next time I grab a book and read for a little bit, then try again. Last night while the world slept I vacuumed the air vent for the air conditioning unit, trimmed the cat's claws, sketched two pictures, watched a couple of youtube videos on how to paint flowers, practiced those techniques. I laid down and decided I had to work on my Christmas shopping list. Then, I laid down and decided I needed a better way to keep track of our bills. I tend to forget to pay something and then get a late payment and all of the sudden we are behind, which is what we are doing right now... playing catch up.
Plus, when I'm manic like this the house is a disaster. I'm in creative mode so EVERYTHING else is... well, forget about it. The coffee table in my chick den is covered in water bottles, paints, sketch books, etc.
Another thing, I put on Twilight because it's the one movie I can sleep to. In fact, it puts me to sleep. Something about the background music just lulls me. But, then I put my Twilight on and it blocks out my brain and my fingers start twitching. Now I am up again writing this and watching my soaps. It's 11 am and I'm so exhausted, feel sick from no sleep but wondering if I should just try to stay awake till at least 6 p.m. so maybe I will get turned back around or if I should try to sleep again.