blogging, chronic illness, comics, depression, diabetes, disabled, drugs, fibromyalgia, h.r. giger, illness, medicine, Movies, spinal stenosis

update on the state of my mind

i heard an audioslave song, one of my favorites, on a grunge station and i choked up, got tears in my eyes. i keep wondering what chris cornell was thinking during that time between the show, alone in his hotel room, to hanging himself. what pushed him over the edge? all these years i’ve seen interviews with  him and he always seemed so thoughtful and intelligent. i have depression too (i’m bipolar), so i can imagine those feelings pretty clearly. i understand being able to play a show without anyone knowing that you’re feeling like you just can’t make it anymore. (not that i’ve ever played a rock show in front of thousands, but i have had to put an “i’m normal and happy” face when i had to. he had to a lot.  i know you can hide even the worst feelings.  i feel for him so bad. i wish i could have talked to him in that time between the show and his suicide. i don’t know if i could have helped at all, but it seems like if there had been someone there, who got how he felt, it might have gone differently. although, someone who wants to die enough to actually do it, will do it sometime, no matter what you do. i just wish and wish and wish it hadn’t happened. i try to hear it in his voice, when he sings, and i think i might.

i’ve had a lot of pain these past few days. it’s my back i think. that and my knees. the injections in my knees have worn off. you’re usually supposed to get the injections twice a year. you get them in your knee joint (or in this case knees).  you take them in three set sets, both knees each week for three consecutive weeks.

the last time i got them was a year and a half ago. i was having problems with my legs because of my spinal stenosis. at first they thought it was diabetic (yup, got that too) neuropathy, but then decided my symptoms didn’t fit. i was also seeing many doctors on the way to being diagnosed with fibromyalgia. in the middle of all of this, i got two sets of the arthritis injections (the medicine is called Synvisc) and each time my legs became incredibly painful. i figured it was the shots, since it happened each time i got them. i refused the third set (but it still worked for all that time!).  the pain was insane. the second time i ended up screaming and going to the hospital in an ambulance. the EMT gave me iv fentanyl . the pain was still intense, but it made me stop screaming. at the hospital they gave me a couple of shot of dilaudid and that did the trick. they sent me home and the pain went down a lot, but was still feeling too bad to function. it was like that for several days. i don’t know how i got up the stairs but i didn’t go down for 3 days. the staircase was impossible. sitting down on the toilet made me cry out from having to bend my legs.

so! it’s time for synvisc again and i’m fucking terrified. but the knee pain it too bad to live with forever, or even much longer now. i have to try sometime! eep. gasp. panic.

i’m doing something that might be smart, or it might be stupid as hell. i’m getting the one shot synvisc injection. you get all three sets in one injection. it’s 3x as much medicine as i’ve been getting spread over three weeks. the doctor says things like, there will be a great deal of pressure. and the nurse says, the reason not very many people get the synvisc one is because of the pain.

the medicine is thick and the surgeon puts a hypodermic needle that seems like it’s a foot long into the center of your knee joint. it hurts. a lot. but i could deal with it, i’ve been through a lot of pain over the years, so i was ok. but i’m scared about this one. will it be three times worse? i can’t imagine that. the only anesthetic they use is lidocane on the skin where the needle goes in. it doesn’t do shit and it hurts like hell when she puts it on, burning cold. beyond that, and more importantly, than that is the aftermath. will it be 3x worse? i can’t imagine that either.

i decided have the one time shot so that i wouldn’t have to go through the pain afterwards 3x. fear fear fear.  i have a lot of trouble with mental pain, but physical pain is usually something i feel very brave about. but this time is scary.

my tablet died. i finished orange is the new black and it was sooooooo super good. i can’t wait for the upcoming season. my new show is breaking bad. i missed it when it was so popular and i hear so many people say they loved it, i have to watch it. i want to watch better call saul, too, so i thought i’d better watch breaking bad first. i’m reading a superman comic called “secret identity.” it’s a little different than a superman comic we’re all familiar with. it starts with a kid whose parents’ last name was kent. they thought it would be a laugh riot to name him clark.  he’s the laughing stock of the town. but things change. i’ve only read the first couple of issues within the trade paperback. but already he’s developing superpowers that he keeps as a closely guarded secret, hence the title.

i saw Aliens: Covenant yesterday. a lot of the movies at my favorite theater play before noon. all of the movies before noon are half price! so i saw it at 11:30am. it wasn’t very  good. but that’s not to say i didn’t enjoy it. there were some jump out of your seat moments,  and some interesting new additions, but a lot of it was the same thing i’ve seen in all the aliens movies. people see pods and get right over them and look in, well surprise! an alien jumps out and plasters itself to their face. that never happens in an aliens movie! there were running down tunnels or hallways that are sealed and the person running gets locked in with the monster.  that’s an old aliens favorite. it was fun to watch, especially if you’re a die hard aliens fan, like me. one of the things that bothers me the most is that there isn’t any Giger art. i know why, he always battled makers of aliens, maybe ridley scott, or who knows else, used his art for almost nothing and i think they even used things of his after he left the job because they were screwing him over. (this might be quite flawed, but i saw a documentary about giger and that’s what i remember.) i know he was very bitter about it. in this film there were a couple of piles of drawings that you see that look or are giger’s work, but there are vast areas of things like columns with nothing on them when i can imagine them covered with carved giger art.

that’s about it for now, but i think that’s more than enough!

bye!

 

anxiety, bipolar, chronic illness, comics, fatigue, fibromyalgia

the lie or the cold shoulder

today when i went to get my coffee the clerk asked how my day was going. i couldn’t help but answer with the truth i told him i was really really tired. he asked why and i told him, i have this disease and it makes me tired. how long have you been sick? it was clear he thought it was a cold or flu. i was embarrassed that i said it to a total stranger.  i just mumbled that i had a disease that was forever. there! i said it in public, even if i did mutter it!

it’s so hard to deal with situations like this. one option would have been to just say, oh i’m fine, thanks. that’s what i say when i’m nervous, or i’m actually doing really badly. i hate it. why does everyone have to ask. sometimes if it’s an internet person that i only know a little i say, do you want to know the truth or do you just want to hear i’m fine? i suppose that’s kind of rude, but that’s exactly how i feel. if you must ask how i am, be prepared for a lot of complaining or the cold shoulder.

sometimes i wish i didn’t have an invisible illness, that i had something you could see, or at least something people know about, but who knows anything about fibromyalgia? spinal stenosis is even worse. even fewer  people know what the hell that is. it’s not as invisible as fibro. i limp and walk with a cane. but the pain in my back and those awful flu-like symptoms of fibromyalgia don’t show, not does the awful nerve pain in my legs, not to mention the arthritis in my knees which doesn’t really affect my walking, it just hurts a lot.

i really wanted to explain fatigue to the guy i bought coffee from. of course he’d never get it, and in truth, i’d never actually say it, but it’s tempting. fatigue motherfucker, try it sometime! sometimes when i’m getting into to bed, for a nap,  or for the night, i have to sort out the covers, arrange the dog. get myself comfortable, etc. part way through all that, i’m hit with a flare of fatigue. i just fall back on the bed, none of those things done, i was just overwhelmed by frightening tiredness. sometimes i want to cry when i feel like that, but i’m too fatigued to even do that. i just laying bed for a little while and slip into sleep very easily.

i want to look fuss with my tablet and maybe even watch some Arrow, but my arms hurt too badly to hold it up. i have to sit at a table to do it. sitting up at a table or desk is hardly  comfortable with my ouchy back and hips.

i’m almost desperate to communicate. my sweet  husband is a very quiet introvert, he really doesn’t like hearing about things like my chatter when i’m nervous, or manic like right now. he’s not like my best friend; we don’t sit around and discuss problems or advice or support. his favorite thing right now is Planet Money podcasts. i shouldn’t complain, but sometimes i wish for a warmer, fuzzier partner.

i read the the first volume of Wonder Woman in the rebirth series (DC). it was really good. in terms of the art, most of it was great, showing her as the Amazon she is, tall, ready to fight at anytime. her costume is a little more stable, lol, it doesn’t look like her boobs are about to fall out at any moment and you wonder, how can she fight with a metal bustier on? she has a regular human lover! she’s been with Superman in the past, but this is intriguing and new.  the thing that i liked in every drawing of her was her hair. they (there are different issues by different artists contained in the volume i was reading.) all drew her with gorgeous flying and floating and curling hair in a great wavy, black and massive mane. i wish my hair looked like that! 🙂

anxiety, chronic pain, comics, corgi, dachshund, depression, diabetes, disabled, dog, dogs, dorgi, fibromyalgia, oakland california, pets, pictures

My angry toe.

I am having a difficult time today because my pain has been bad. I have a decent size split in my big toe. It has something to do with dry skin, but it seemed like it was much better since I was getting pedicures and doing the lotion and socks thing regularly. Now it’s open and slightly bloody. it doesn’t seem red or swollen. It’s throbbing and is super ouchy to walk on. Good thing I already use a cane!

The part that worries me is that I’m diabetic and this is a cut on my toe that hasn’t healed. I don’t have diabetic neuropathy, but if I did, I might get wounds on my feet that I wouldn’t feel until they were in really bad shape. It can lead to foot or leg amputation. You have to have regular tests, very simple, that check to make sure you have feeling on the bottoms of your feet to avoid all that. I’m going to the doctor tomorrow, just to be sure. That, and because it hurts so damn bad.

I went to the dispensary at last!!! I bought good stuff, buds and pre rolled joints (actually, cones). I smoked one of those joints when I got home. Such pain relief and relaxation, huge improvement in my mood, too. I managed keep my munchies to fruit. I smoke now and then, actually most of the time when i’m hurting this much.

I walked Mackie a bit since I was feeling better and being outside in the bright warm sun was joyous.
We played more inside. Mackie barked his happy bark several times. I answered him and we had tehe most bonding happy dance!

mackie_rolling_in_the_grass

 

I ordered a wonder woman comic as well as a volume of daredevil and a one of the most recent justice league books and the sandals that I lost one of (how the fuck can I have done that??!!),again. That’s a testament to how much I like them! They were going to be my all the time shoes.

addidas sandals

I got dropped from my car insurance after getting in two accidents on a week. I don’t think that will ever be funny.

dent in hood

The drive to Oakland, home of Harborside Health Center, was nice. It’s the only place I can go on the freeway without having a panic attack. it’s a 40 mile drive from here! I’ve done it so many and been so scared that I’ve conquered it! But I can’t get off course at all ever. lol

Have a great night!🐸

anxiety, chronic illness, chronic pain, depression, disabled, dogs, fatigue, fibromyalgia, medical marijuana, Movies, stress relief

taking a hard fall

the huz and i went to Beauty and the Beast. it was all about dresses and dancing. it was visually fantastic, but that’s about all it did for me.

as i was coming in the house i tripped on the first  step into the living room i tripped and feel on my face. the mega huge soda that i refilled when we leaving the theater and went flying all over the room. i hit the floor with my hip and hand. now i have a sore wrist, a really sore hip, and a sticky floor. the floor is wood, which made the fall delightfully hard. grrr! gahhh! hopefully it was no more than some soreness. i fear this might bring on a flare (just like any kind flare up is like other kinds of flare ups, but in this case, the flare is increased pain) of my fibromyalgia symptoms.

i may spend the evening in bed or maybe one of my prescription NSAIDs. they help quite a bit. ice packs and heating pads will feel good and my pjs and of course, Mackie.

remember those adidas sandals i was stoked about?  i left them together and after the cleaners  came, there was only one. i hardly think they stole it. what would they do with it? lol i trust them anyway. i have looked and looked looked for it and can’t find it. sometimes they put things in odd places that i’d never think to look in or take it away with all their bags of stuff. now what, right? i suppose buy them again, but it just makes me want to scream. the huz will look. he’s good at finding things.

i guess i’ll just smoke a lot of medicine. of course that makes me worry about running out because i  think i really am going to. that’s only happened once before.

so the day sucked. the evening hasn’t happened yet, it might get better.

anxiety, bipolar, disabled, feelings, fibromyalgia, Life, medicine

snapshot

i usually get coffee, about 7:30. i get my coffee at 7-11. i can make better coffee at home, but i like getting up and going somewhere. the guy working smiled and greeted me, and i him. he knows i like the hazelnut coffee, so if it’s gone or not fresh he’ll make a pot for me as soon as he sees me. 🙂 so the coffee is always really hot and fresh. sometimes, ok, i’ll admit it, most of the the i get a donut, a chocolate long, bar shaped one. it has custard inside. ahhhhh…when i’m feeling strong about losing weight i don’t get a donut. yesterday and today i didn’t get one, yay! i sit in my car and eat my donut, drink my coffee and drive around or go  to a store and buy something under a dollar.

i never want to be around the house when people are getting ready. it makes me wonder what it would  be like to be able to take a shower everyday.it makes me wonder what it would be like to look nice with my hair looking nice and jewelry on. it makes me want to be able to socialize with my co-workers and enjoy it.i’d love to have NO MEDICINE to take before, during, and after work.

i have a lot of things most people with jobs never have, good things. not working, can be as much a bad thing  as a good. you enjoy it for about the first six months and then you start to feel bored and useless. and you have to accept you’ll never work again. i was politely asked to go on disability. that was in 2000. gaaaaaaaaaaaaah i expected to be successful, not shuffled out the door. i felt like i was fired. i never dreamed that it could happen to me.

as i was saying i was there are bad things about working and i miss having to  have something to do with my life, but c’mon, i get up when i  feel like it, at least by the time my huz gets up when his alarm goes off. that’s at 8. when i worked we had to be there and bright and shiny, between  5:00am and 7:00am, depending on the schedule.i’ll never miss that job, except for the stock, but that’s an entirely different story.

now i  only have appointments like taking my dog to get his claws clipped, or for  my manicure, very very low stress.i don’t have to have short lunches where i run around and try to get errands done.i don’t have to deal with rush hour. i have a dog that’s getting older and i can take him out every two hours, i can’t imagine the poor thing shut out on our balcony having  having to wait desperately for 8-9 hours. he wouldn’t get enough  play or exercise.

weekends still excite me! i think TGIF! or have a good weekend or it’s gonna be great to have some time off. all my time is free time. the huz is home on the weekend.and i’m really glad about that!

mind you, that’s all great but i’m chronically ill. the only time i leave the house is that trip for coffee. i’m in pain, i have limited mobility, fatigue,  on and on.

so maybe i should say, i wish i had somewhere to go in the morning, to have a point to my day and be able to do a good job. but all that hinges on my being healthy. and i’m not.

but i try to make the best of it. i still do thing  things as though i was getting ready. but on fresh clothes, brush my hair or and do zillion things to my face, make sure my nails are ok; put on psoriasis cream, put lotion on my legs and feet. and then i have to carefully clean up after myself because we share the master bathroom double sinks and the huz is a nazi about that counter. it has to be completely bare except for our electric toothbrushes and some hand soap. i had to fight just to get the hand soap on there, too. jeez.

so, it’s complicated, and i think i won’t think about it anymore! Shame on you fibromyalgia, spinal stenosis, and diabetes. there is nothing good about any of you!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Life, Uncategorized

complaining

i’ve been wanting to write all day but my head is in a weird place and i know i can’t organize my thoughts, i can’t come up with an  interesting subject and i probably can’t write very well tonight.

so, i’m just going to have a brain dump. i dump everything that’s on my mind and you can read it if you want to. and you always have the option to like or comment. you totally don’t have to.

i made an alcohol ink painting today, 2 in fact. this time i wore gloves so the ink wouldn’t stain my fingers  and ruin my manicure! one of the paintings was utterly  boring, looked like there were  only three colors, just sitting there, not interacting with each other. the other i worked on was bigger and it just turned out shit. i’m certainly letting you know i’m feeling grumpy!  OMG I CANNOT TYPE

the huz is installing a new light fixture in the hall way to the master bath and it just goes on and on and on and on…earphone time! i’m listening to Queen. what are you listening to?

i went to the grocery store, that’s right, i went on a tiny little shopping trip. that’s more than a tiny little victory! not only do i have trouble with having the endurance to go to the store, but i used to go there a long time ago, before i was sick. people i used to know sort of recognize me and try to talk to me. i wish these overly curious people would mind their own business. i keep wanting to say they were only trying to be nice, but they’re not. if you listen to what they say and they tone they say it in, there’s always an undercurrent of feelings of disbelief. when i don’t have my cane, people give me dirty looks when i park in the handicapped spaces (i have a handicapped parking placard).

i fell asleep just then lol. i woke up having typed the letter “a” bizillion times.i haven’t been sleeping with my CPAP mask on, well for one reason my face and mouth have been hurting so much, and also cause i am finally admitting i really really don’t like that damn thing. you have to lay your head on the edge of your pillow so most of your head is sorta sideways on the mattress to keep from having the mask smashed into your face, which makes me panicky and eventually really pissed off that i can’t sleep comfortably. it’s bad enough that the rest of my body hurts, i have to strap that torture device on my face.

my huz is playing the new Zelda now, i’m doing this, and mackie is back in his hidey hole behind my desk. i can’t tell for sure, but i think he brought a bunch of paper back there for a nest. i can hear him back there sounding like he’s nesting. domestic bliss!

 

chronic pain, medicine, surgery

my hands

my hands are ruined. i don’t talk about it nearly as much as i do with my other ailments, it’s kind of complicated, especially because it’s a bit weird. plus it’s an emotional pain that can be hard to talk about because, i said in the title, i feel as though 4 surgeries made my hands worse than they were before. they feel ruined because i think the surgeon wasn’t open with me, and i don’t think she even knew what it was going to be like. she was so casual about doing more surgeries. as things went downhill i listened to her because she was the surgeon and i felt so intimidated and out of control. i wish i had thought about it more. there was nothing to research because i really don’t think anybody has done this before. also, i had the problem so much worse than worse than most people ever get.

most people are familiar with trigger finger. it’s a problem when a ligament catches on  something as you bend your fingers the get stuck and you have to straighten out the joint with your other hand. it’s painful and makes it very hard to do normal tasks.

most people who get it have it in one finger  i had it in all ten. when i told my GP about it and she sent me to an orthopedic surgeon. the first step is is getting cortisone shots to diagnose the problem. the doctor shoots you up with the steroid in the joint that’s affected. i get injections in my knees, 12 per knee per year. they hurt, a lot. but try getting an injection in your hand! the first one i got was in my right thumb. i said (and i’m sorry but i have a terrible potty mouth) FUCK! when the needle went into the joint. later i got one in my pinkie and that was even worse.

it didn’t respond, so she decided i needed surgery. i was ok with that, it was a small surgery and i’ve had surgery before. it was really easy, i chose to do it with general anesthetic because i have a horror of waking up on the table and conscious sedation didn’t seem like enough.

to speed things up (it’s a long story!)  other fingers  in that hand started manifesting trigger finger symptoms. more cortisone shots. the surgeon decided the best thing to do was to fix the other four fingers because she didn’t want me to have several surgeries. ha! so it was four fingers at once. when i got my bandage changed the nurse couldn’t believe i had so many  fingers done at once. my hand was huge and black and blue there were four deep cuts on my palm. that one was not easy. the healing took a long time and the stitches were not ready to come out when they were supposed to. my fingers wouldn’t close all the way, so i went to a hand physical therapist. omg she was hardcore. lisa. she had no mercy!

that sort of healed. then the problem showed up in my left hand in several fingers, so she operated on all five fingers. the nurses at the surgery center kept asking me over and over, all five? all five? that surgery was scary and miserable to heal.

i was horrified when the trigger finger  showed up in the left hand again. it was in three fingers, so she decided to do all five AGAIN. i ask  myself why i did it, but i have to remember that there was actually a valid reason. the trigger finger that came back in those three fingers of my left hand. it hurt, just like before. i was unable to do much with that hand without my fingers caught and becoming useless.

i think the doctor was getting a bit horrified herself because she sent me back to lisa the *day after surgery.* she had me on a really high dose of percocet because the physical therapy was really tough. i was going three times a week from then til forever it seemed like. lisa told me to ice it and tape it up tight when it hurt in the future; she knew it would.

so four surgeries later, my hands, especially the left, hurt a lot and swell a lot on a regular basis. i’ll never be able to wear my wedding rings again.i have lots of ice packs, self adhesive bandages and compression bandages on hand. when it’s really bad, i wrap it up in sports tape. lisa  was really into taping things as tight as  possible.

i feel like my hands are ruined.