Fibromyalgia

Bipolar – Fractured

/ Robin / Leave a comment

I don’t like to talk about the spin, the time when I free fall and cannot make myself stop. When anger and grief and pain explode in my life… not just my brain. What I think, this is what and who I am.

For the moment. Sometimes these moments can draw on for the proverbial eternity and we try to think, if we could, that we’re coming near the end, that we cannot stand this anymore.

I didn’t have more than brief moments of these things. Most of the time I have been so manic that I thought my brain would implode from shear spinning. You see my friend, I’m a mixed Bipolar 1. Those of you who aren’t familiar with this condition, congratulations. Today you win the lottery. This last few weeks have been terrible. I have been very depressed and unable to see it or deal with it. When it was suggested that this might be where my massive irritation was coming from I had a difficult time admitting that it probably was. (See how I did that? I still skirted around it.)

I have exploded, with my kids present, too many times. Recently, too many times. Okay, not exactly always at them. Sometimes just when they’re around. When I’ve considered my past I worry for the times they’ve been exposed to my insanity. Being a single mom and going ballistic for what seems now like for no reason at all leaves a mark on kids. They say it’s worse than divorce. I’m both. Bipolar and divorced. I worry for they scars they carry… because of me.

I’m a mixed state depressed and yet manic Bipolar 1. I have two kids still at home. I am alone. I have no friend to speak of accept one and we met on line and don’t speak of these things. I’m glad for that. I can be normal with her. She knows I’m Bipolar and she doesn’t care. I act rationally if a little meanderingly with her. And yet, I fear I’ll say something and she’ll walk away too. So many have that I’ve quit trying to find friends.

My family doesn’t (beyond my kids) understand. Not at all. When they care to try to… they… well they don’t. Recently I learned that when my mother took home stuff to read about Bipolar she never read them. She’s never looked it up on line. She’s now 72. She has no excuse. She knows how to use Google.

Yet we all know that even the great Google cannot explain this that we are. We are ourselves. We are great in mental volume, if not in order. We excel in emotion, if not in control.

I spent a lot of time this last few weeks in grief, anger, fear, irritation and depression. I suppose, don’t understand why I avoid that. I think it seems to my fractured mind that admitting depression means loosing the last bastion of my mind. Confusing, I know. New meds sedate me too the point where I simply cannot not sleep. This frightens me as well. You see, as my med provider put it, “We need to get your nerves calmed down.” Now, when I’m not so calm as to sleep, I’m not calm. There must be a middle ground. I must give my mind time to heal. Be patient.

My kids suffer I think. They are afraid they may have inherited my genes too much. But you know, after all of me, all of living with me, they still believe in themselves. They have ego. EGO. All three believe in themselves.

See you thought I’d never finish the “pride” letter didn’t you? Ha! They have pride in themselves that is good. It isn’t forced. It’s part of who they are. Part of their hardwiring. I asked them how they each manage to be so sure of themselves. This is what they said, each one said this:

“Mom, you taught us to believe in ourselves. You drilled it into us. You, you did this.” I did. I made them who they are. (Give this wording to me for now. I deserve it.)

I have my own ego. Ego born of an accurate estimation of ones abilities is a good thing. I’ve struggled with this thinking I’m really stupid because I never finish anything. But I have. I’ve successfully raised three amazing kids (young adults). I know what I’m good at and they are many things. I finish things when my brain lets me. One thing.

I’ve raised three amazing kids. I’ve been a wreck this week. But, I started on Lyrica for some of my physical pain. I should be scheduled soon for a shot in my spine and that should alleviate a lot of my other physical pain. My additional meds should mitigate some of my mental pain. Even though I’m up in the middle of the night again, I feel restless, but hopeful. For the moment. These moments will grow longer, this much I know from experience. I must stay the course and take all my meds every single bloody day.

I have one thing to say to you and I hope you will listen.

I’ve raised great kids. Awesome kids. I love them beyond words. I… have raised awesome kids despite myself.

My friends write to me and comment on my letter. I wish to read your thoughts. You too are important to me. Till the nest time, be well and be patient with yourself. Give yourself a chance to heal.

(Oh, and there are now 23 pot shops. (Oy veh)

Bipolar – PENS & Oxycodone

/ Robin / Leave a comment

I love pens. I really, really want to get one of those very expensive jobbies. I saw some in a gift boutique downtown Wednesday afternoon. They were 2013 models and at a bargain 50% off the normal $450 and $300. Oiy! Maybe not today. I’d love to get one for myself and one for my eldest daughter. We both love to write.

Writing can be a passionate thing. It is with me. Always with me I’m investing something of myself when I write whether it’s something blatantly obviously personal or if it’s something going on in my head that I want to talk about.

Right now I want to say something that I think is very important so sit up and read carefully. I’m putting this in terms of applying to myself so I know this from personal experience.

I have chronic pain. I have something wrong with my L4 and L5 disks, degenerative disks all the length of my spine, osteoarthritis, and fibromyalgia. I have a twice replaced right knee (replaced twice in two years, the first time it didn’t work) known as a TKR. I am 51 years old and I must say I do not appreciate needing to go to a pain management specialist and taking narcotics… every day.

I’ve been having what i can only label as nightmares now that I’m taking closer to the prescribed amount each day. (I also take Tramadol but that gives me migraines after a few days use). I don’t normally have nightmares. I was having trouble discerning reality fro dream when I would wake up in the morning.

Tonight I woke after another “nightmare” and remember something quite startling. When I was “incarcerated” in a facility to recover for my TKR the second time because my parents were moving and my kids wouldn’t be around to care for me giving me meds and such. It was a horrible experience. Besides generally feeling like I was incarcerated I was on Oxycodone at my maximum dosage every single time I could take it. The staff were only too happy to let me have it.

Unfortunately I had several nights in which I had terrifying and convincing hallucinations. It has taken me a long time to admit they didn’t really happen. Add to that, that I don’t remember my eldest daughter calling me daily from the MacDill Air Force base where she works as an air traffic controler. We live across the country from each other and that eats at my heart. We’ve always been close and the distance is difficult. But I don’t remember her calls and I know that bothers her. She took care of me during my first recovery and had to go through my even having two blood clots below my surgical knee. That was also a nightmare.

Last night and tonight I’ve been about at the level of Oxycodone that I was at in the rehabilitation center (read: nursing home) and I’ve started having hallucinations, not nightmares.

I suspect my use of pain medications is on the way down. We’ve tried a number of things and nothing seems to help.

I have an idea that I am sure will help. Ever hear of neuroplasticity? I’m sure you’ve heard of Luminosity, that’ s neuroplasticity. For me, this will mean using mindfulness to “remap” my brain and in doing so enable my actual brain structure to interpret pain differently. It won’t seem painful to me.  I guess I could put it like that without going into detail right now. I will soon though.

Neuroplasticity is becoming my key to dealing with my much of my troubles. Think of it, how awesome it will be to control my chronic pain, Bipolar, FM and OA… at least to a degree. Many advanced meditation practitioners are known to change their brains in a manner like the mindfulness I’ve mentioned.

Mindfulness. Neuroplasticity. How great to have the possibility of using these disciplines to help myself!

I’m not likely to be drug free… but I’ll get as far as I can.

I’ll talk about Mindfulness and Neuroplasticity in depth soon. They are very important disciplines that science backs up. I mean they are both proven scientifically to work in the areas I need. They impact many other things too.  After all, they are not confined to “topics” the brain considers. They do however, change the brain in ways we cannot comprehend considering the vast expanse, the last frontier as they say. At night I’ve taken to listening to Pandora. I searched and found a Mindfulness station to listen through the night. It’s playing right now. I finally decided to subscribe. Know why? The commercials were scaring me as I slept. Ew.

Watch your consumption of drugs like Oxycodone. You could have side affects you would think would anticipate.

Be cautious. Be ever vigilant.

Catch you later.I’m trying to stay awake for a while. Those hallucinations were getting very weird. Scary.

Robin

I’m in such pain…. I’m a BP1, ADHD, PTSD, FM, OA, MOM

/ Robin / Leave a comment

Seriously though… I’m in an extraordinarly dismal pain deep in my bones I think. I’m not certain. It starts somewhere around my swollen and annoying disks down around the L-something-or-other.

Restless legs? Perhaps. Runs in the women on my mom’s side of the family.

Anxiety encouraging psychosomatic (maybe) spinal pain to radiate through Restless Legs and deep to the ass of the leg with the double times new knee.

Translation… My equal isn’t ibriumating. Get it? Equilibrium. Equal. Equal-ibrium.  New knee as in “not using it much for years and am lopsided and out of synch.)

What?

Seriously though… From my lower back down past my toes especially in my right leg and alien beastie is trying to pull the bones out of my flesh. Meat. Oh my.

Seriously though… Hurts like a “$(%*& ”   of  a    ” )(*&#_ ”   If you know what I mean.

Sitting on my bum on the floor is a feat of unsurpassed hilarity. Translation: I’m either laughing madly – or – crying with great abandon. Take your pick.

Tonight the pain started about 1:15 in the afternoon PST.   Not EST.   PST.

I took my Oxycodone and heating pad and lie down (lay down… well I wasn’t “sitting” down) on my bed while my puppy (Australian Shepherd/Heeler named Bailey, a little girl) snoozed at my feet. Literally. She slept temporarily where my feet could go on my queen sized bed. Then she slept where they also could have been. And then again. Add. Spin. Rinse. Repeat.

Where was I? Right. Bloody bleeding sickly . . . agony. Pain. Unrelenting, mind blowing, consuming… pain.

I don’t watch American Idol. Did once, when it all first began. Still have a fondness for Kelly Clarkson. The queen upon the Idol throne. I sat tonight not watching the 13th season with my son (Kyle, 19. He’s a boy.). I think I must have been doing it louder than I noticed because suddenly he sideswiped my attention from my ass to, well, to my whining. I was whimpering and whining.

I never allow myself that luxury while my kids are about. At least, not before this. Today, I’m in such pain… And it started well before bedtime.

Oh damn!  I just want to sleep.

I think, I think I’ll go soak my ass. Okay, I’ll soak everything that will fit in the tub too. Maybe some soothing heat not floating around my body will help some. Oh great bird of the universe I hope so. Damn I do hope so.

My car is in the shop. Again.

My phone is stupid and dead.

My knee is still new.

My weather is nice. Just right today.

My belly is too big.

My kids are amazing. And my puppy too.

I can see my feet again.  When I move my boobs out of the way. I’m short you know.

I’m in so much pain.

Good night.

Tomorrow is going to come whether I’ve slept or not. As it always does and always should do. I would do well to remember this.

Come on pain, time to have a bath. Pain, would you consider going down the drain? Please. No? Screw you. I’m having that bath anyway.

Again. Good night.

What’s Wrong with Me?

/ Robin / Leave a comment

All right then…. early on in my adventure in this thing called “me”… things were really rough. Actually, things have always been rough for me.

STOP!

Wow, that was horrible. I cannot relive all the horror that I’ve been through just to tell you this thing I’ve discovered.

When my kids were young and I was coming apart at the seams I struggled against myself to find peace. Some days the darkness wanted me too much it seemed. God was nothing and I was all alone. Alone in my head with myself.

The thing about me is I’m never ready to stop. Even when that’s what I’m screaming that it’s what I truly wish for.

I came across an idea, a lot of ideas. Things written and spoken that gave me the beginning of control. Control of myself… stopping.

Think about this. . . I am the only one in my head, controlling what I think and who I am. Yes, I may be admitting I’m bonkers and I’ve chosen to be bonkers… but I’m not. I’m not!

Youch! Bipolar is . . . my brain dancing to a private tune. When I’m off my meds or on something that just isn’t working for me my blessed brain runs amok. Everyday I enter into negotiations with myself to see if I’m going to cooperate. Cooperate with myself.

I am the only one who can control what I think.

Just me.

Yes there have been and will times when I don’t believe that. But it is true. My strength comes from within myself. I had to be on medication after medication and so much pain… when the drugs started helping me begin to hold on to myself, I was finally able to find an idea that would see me through this day.

I am the only one who can control what I think.

Okay, I need a little help with that from drugs, but what’s a girl to do when her brain runs bizarre?

I am the only one who can control what I think. Just me.

I won’t say I’ve been saved, because that’s not what this is about. It is about mental health, about my brain dancing Bipolar, ADHD, PTSD and always some new alphabet soup. I’ve been trying on OA and FM. We’re not on great terms just yet. And then I saw the Neurologist last week and he told me basically I’m mental. This facial tick I’ve developed over the last six months or so is my brain trying to get my attention.

Let me get this straight. My often out of control brain wants my attention so it, my brain, thought it would have a party on my face? Seriously? Sucks. He suggested I see my mental health professional. Wow. Show stopper.

My brain, with a “mental” disorder… is mental. Super sucks.

I am the only one who can control what I think. Just me.

Maybe that’s what my mind has been trying to tell me. That I need to listen to myself, that I need to learn and teach myself. I need to find whatever helps me handle me (good and healthy things) and pursue them with great vigor.

I must always remember that I am the only one who can control what I think. Just me — with a little help from my meds.

Confused yet? You are? Good. Me too.

You Can’t Have My Leg!

/ Robin / Leave a comment

It would seem that I’m not done with me yet. I’ve paralyzed myself for a long time, not willing to write, telling myself that I don’t know where to start. So many odd and terrible things have happened to me… are happening each day… that I rationed that I was waiting for a lull in the storms that are me so I could present you with a neat package all polished and not like I am now. If I were a color book I would never have drawing inside my lines.

Here I am. This is what I’m thinking tonight:

My right leg is going to fall off.

Seriously. That’s it. Oh sure, with my alphabet soup (Bipolar 1, ADHD, PTSD, FM, OA… for now) crowding me for more undeserved attention. They annoy me. Like a flock, a gaggle of Canadian Geese launching themselves at me unreserved and underrated. They scare me. They are impossible to reason with. No matter where you are if they decide you need to be chased, you’ll be chased as long as they can chase you. No lie. Your heart will pound excitedly when the medium sized birds take after you on the ground like a Disney movie gone terribly wrong.

My leg. I had my right knee totally replaced in January two years ago. By the following year it was clear that the surgery had failed. The prosthetic that was implanted in my leg bone failed to graft with the bone it was supposed to graft to which would, had it worked, have given me a working and reliable new knee.

Wrong.

August 2013 a surgeon specializing in replacing messed up knee replacements replaced my replaced and prosthetic knee. Both times I suffered terribly (differently each time). I suspect that no surgeon would appreciate me talking with any of their patients and telling them how the whole sordid mess went. (To clarify – Sordid meaning: involving ignoble actions and motives; arousing moral distaste and contempt, sleazy, dirty, seedy, seamy, unsavory, tawdry,cheap, debased, degenerate, dishonorable, disreputable, discreditable, contemptible, ignominious, shameful, and abhorrent. The exact opposite of: respectable.)

The up-to-the-minute report is this: Friday I showed my MD that my entire surgical leg (right) was bigger than the left. No sense in studying it to see if I was imagining it. It obviously belongs on some other person’s body. This is a problem. I don’t even know what the problem is and already I realize it’s a problem. I think my name must translate in some language to “problem”. I’m certain of it.

I exposed the bare and big leg to my doc on Friday last. He sent me back to my surgeon, but not till after we get another and new authorization to see the fella. Seriously. Same leg. Obvious connection. Gotta have that new authorization. I called his office and explained the situation. The woman at his office agreed to request one for me from my MD. (Yes, I’m saying “MD” and not PP, PC or any other ridiculous set of the alphabet… again with the alphabet. He’s my doctor, my medical doctor. That’s Medical Doctor. MD.

What I didn’t realize was that my MD had that very day put in an order for me to have a vascular study done on the affected leg. They would take me as soon as today (Tuesday). Getting an appointment that fast freaked me out. (Just a little FYI.) Since my doc referred me to my surgeon I assumed he was done with me regarding this particular medical happenstance (coincidence).

That last sentence looks strange to me, but my brain refuses to use any other word.

Anyway, the surgeon didn’t order the imaging before he even saw me. I wondered if maybe he had so he would know ahead of time what might be going on. But.. no. My MD ordered it. When he starts a process that really should probably be ordered to the specialist I was being sent to I hit the “worry” button and all hell breaks loose. Again.

Today the resounding thought that pestered me like the rain does every time it soaks me when I take the puppy potty was: “They are going to take my leg off.”

Seriously. “They are going to take my leg off.” That’s what my brain has been saying all damn day.

Just to show you how badly I freak myself out living inside my head with my alphabet soup, my MD has ordered me to have a service/companion dog. This, is our puppy, my service/companion dog in training. She’s so awesome. But more about her at another time.

I’m going to jump now through the rest of the day to now. I’m having considerable back pain which has kept me from sleeping. I began to write this. I got half way through it. Suddenly I see my bedroom door open, but I see no one opening it. Ahh. It’s Maks. Maks is one of our awesome cats. Throughout all my ailments Maks has been my healing kitty. Cat. He’s too old to be a kitty. Just don’t mention that to him and we’ll all get along just fine.

Whenever (most of the time) I’ve been doing particularly terrible, like today and taking my leg off, he comes to me and loves me up. Right now he’s purring and clawing, I mean needing, my right hip. This isn’t where he normally lays. He usually takes up station keeping on my left side somewhere but since we got the puppy (Bailey) he hasn’t been up to see me very often. I’ve been having my son bring him up to me when I retire for the night so he can get used to puppy smells and sounds. It’s working. He’s beside me doing his magical cat thing. How the hell do they know when we need them? Of course I’ve heard about the cats and dogs that can smell/sense impending death or various illnesses. He thinks he’s one of these special and extraordinary furry companions. I agree with him.

He’s been urging me to pet him and love him up stabbing me gently and now snoring at me. The look of love on his face is wonderful. (I know what you’re going to say. Cats don’t make that kind of face and they don’t feel like that you bozo. And then I would tell you to shut your trap. It works for me.) I’ve been alternately petting him and waving his loose fir away and writing this. I like it. I feel better. He knows my alphabet is haunting me. I do… feel better now.

Tomorrow afternoon I’m having the vascular imaging done of my entire right leg. It’s weird and cool to watch. Stay tuned in to this same bat time, this same bat channel.

Wow, can this cat snore.