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! 🙂

abstract, anxiety, art, batman, bipolar, chronic illness, chronic pain, comics, depression, dog, drawing, drugs, fibromyalgia, insomnia, mania, medical marijuana, mental illness, oakland california

still manic, still manic, still manic

i spent my day feeling too jumped up, a lot like being on meth. yes, i know a lot about being on meth. oh boy, i’ve never said that in public before. so yeah, i wish manic was like being on coke, but unfortunately it’s like being on meth.

i ate a big dinner which i am regretting because i haven’t been eating much so i feel bloated and gross. sometimes being really hungry for a couple of days makes me feel so clean inside. no, i’m not anorexic. my moods just throw me around a lot, and i’ve got that and all the meds i take and the fibromyalgia and spinal stenosis, and a nasty childhood all contribute to making me do, and feel, and act a little strange…a lot strange…  i do things that don’t make sense some of the time. i got hooked on meth because i was so depressed and it made me feel so much better, that i kept using it. untold energy, no appetite, no need for sleep, elevated mood, euphoria. sounds like being manic, too.  ahhh and delusions of grandeur, i hope i don’t get those, but maybe i’m not bill gates.LOL

i went to the comic book store today. alex the comic book guy was there, of course he was there, it’s his shop. hehehe actually, the only day i’m sure he is working in the shop is tuesdays, so i go about every other tuesday. he’s a cutie, deep, and really smart. not to mention he’s an incredible authority on comics! i bought two issues of batman all star, the rebirth reboot. i got an issue of jessica jones, but i really didn’t like the way it looked. bummer. i still don’t have money, so that’s all i got. i went to starbucks and only got an iced tea, but a cake pop was calling my name. but i averted my eyes and asked for no sweetener in my passion tea.

it was a gorgeous spring day, first one we’ve had this year. i actually drove around with the windows down in my car. a rare thing. i like to listen to music in the car, not wind noise. i am 100% out of mmj. i scraped up every bit, i used the kief in the bottom of the grinder. i am DRY. i hope it’s nice tomorrow because i’ll be driving up to Oakland to go to my dispensary. i call it “my dispensary” as though i owned it. it’s just mine cause it’s the one i’ve chosen to give all my business to.

i saw my psychiatrist today and she thought i might be manic partly because over the last couple days it got to be full blown and that when i had little or no marijuana. we adjusted the meds to, not take ritalin (that’s a no brainer), and to take less wellbutrin because it’s activating.

i saw a woman come home and greet her dog, who had been home alone all day, and they were both so happy to see each other. that’s the kind of thing that really makes me feel good.

Ant_Hills_by_merpagigglesnort

 

 

 

 

 

 

 

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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

chronic illness, chronic pain, diagnosis, disabled, drugs, fatigue, fibromyalgia, illness, insulin, spinal stenosis

spinal stenosis, why haven’t i written about this before?

i’ve written about fibromyalgia and diabetes and psoriasis but i’ve never written about spinal stenosis. i’ve never really talked about it to anyone before. it’s a bit hard to explain, or at least it takes a little while and not nearly as many people have heard of it.

spinal stenosis causes me more pain than any of my other ailments. it’s a narrowing of the spinal column, caused by a few different things, it’s arthritis in my case. the problems occur at  L4 and L5. the column narrows enough to cause the discs to bulge and pinch nerves. i also have the same problem at the sacroiliac joints.

i have a very hard time walking, i’ve talked about that a lot. people don’t believe it when i tell them about how long i can stand up and how far i can walk. more about walking in another post. i walk with a cane most of the time. sometimes i wish for a walker or that i could collapse  into a wheel chair. like fibromyalgia, the spinal stenosis has flares.

when it’s bad i have to drag myself around with my cane. trying to go upstairs makes me cry. laying in bed is better than standing or walking, but it’s far from comfortable. there is intense pain in my low back. pain in my hips and butt, weird inside pain in my pelvis. that pelvic pain makes me nauseated. i felt pain like that from endometriosis, too. i should talk about that, too (endometriosis, that is). pain from internal organs is different than any other. awful. nerve pain is also different than any other. then there’s injury pain, like broken bones, and the pain from pain in muscles and ligaments is all it’s own too. ahhh and arthritis pain. argh! and stomach pain. lol, i have it all!

my legs are very weak. i trip and fall too often. it bothers me. i see stairs and i imagine falling down them  and just feel terrified. every once in awhile i wipe out at home and end up on the floor. it’s no fun! standing is very difficult. if i am in the kitchen and i want to use my phone to control my stereo, instead of being able to just stand there and do it, i have to sit down just to do that. i don’t go to stores very often because i can’t trust my legs to survive it without buckling, or getting a stab of pain down my leg or in my back and making a grunty ouch noise, lol, cause sometimes i just can’t help  it! leaning on things like shopping carts helps a little but not nearly enough.

the stenosis is bad enough that my huz has to do 99% of what needs doing to keep things going well in our lives and home and meals and shopping, laundry, etc. my  jobs are to make his lunch before he goes to work and taking the dog out to pee (he takes doggy out to poop 2x a day) 6 or 7 times a day. he’s getting older and i want to make sure he’s comfortable. i have to make sure i take all my meds and my injection and blood sugar, take care of myself (it can be a challenge because of the fibro fatigue.. we hire people to clean.

it didn’t take too terribly long to diagnose this. an MRI shows everything they need to see. it’s cool to be able to look at the MRI pictures with the doctor and have him show me exactly where the problem is and what’s going on.

there are drugs to take to make it easier. in general you don’t take narcotic pain relievers for it because it’s chronic. i take a prescription NSAID, use hot and cold packs, do stretching (i could be a lot better about doing that on a regular basis!) and unfortunately, bed rest.

i have degenerative disc disease, which means things will just get worse.

one day at a time!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

chronic illness, diabetes, disabled, fatigue, fibromyalgia, stress relief

self care for the chronically ill

as you know i am chronically ill and i n chronic pain, and  because of that there are lot of things that are harder to do as it is for people who are healthy. i get tired easily, things like standing and bending over, are really painful. i spend a lot of time sleeping and resting because i don’t feel good. because of fatigue it seems impossible to take care of your body.

for a very long time i didn’t do much of any self care. my body was getting dried and ashy.because my diabetes, my feet were awful. the skin on my face needs a lot of  help. my hands were stained with paint and other art supplies. i have psoriasis in visible spots like my elbows. it’s gross and itches and hurts. i have cream for it that works really well by i wasn’t put it on there and all the other places i have the skin problems. i change tense here because things are under control, some haven’t started yet, some are i n process, etc.

i saw my rheumatologist yesterday, for my three month check in. we were talking and he told me how well i was doing. he made a list on the computer and turned the monitor towards me. he typed all the daily self care things i had to do, it was a lot. really a whole lot. the only thing i wasn’t doing was exercise. heh. t he doctor is a gem. he’s cute, too!

i got a pedicure! i ordered some products, which inspires me to practice self care. i got salt hand scrub. kiwi sugar cube scrub for the body in the show. lip exfoliation. mask (two kinds), cinnamon tooth paste (i hate mint and this is the only flavor i  i’ve been able to find that wasn’t mint), facial moisturizer, body lotion, under anti aging creme, and gentle facial cleanser.  (i didn’t buy that all at once!) it’s really fun to buy new products and start a skin care routine. i learned a lot from reading @flzmrtnz ‘s blog post about her skin care routine. check it out  https://flzmrtnz.wordpress.com/2017/03/03/my-skincare-routine-tips/

the rheumatologist was kind of blown away by the amount of weight i’d lost since the last time i saw him, 3 months ago. it’s 40lbs! i keep having to buying new clothes. i just buy jeans once in awhile. lol. now *that’s* self care. i used to binge and i stopped and i just stopped eating so much!

exercise would be self care, but i hurt too much. i try take my dog on little bitty walks. my pain doctor told me to join a gym. i almost laughed. she she sees that i walk with a cane! she also took me off my prescription NSAID, which is awful because it’s so much painful without it. the rheumatologist gave me a different prescription NSAID and i’m feeling better already.

thanks for reading! if you have any questions about any of this, let me know, i’m happy to talk about my illnesses and anything related.

 

anxiety, bipolar, chronic illness, chronic pain, comics, depression, disabled, fatigue, fibromyalgia, Uncategorized, weather

Fibromyalgia Life

i have fibromyalgia. it has an insane number of symptoms. i’m not here to educate you about fibro, i just want to tell you about my experience.

yesterday i was so sick. i had a toothache, totally not related to fibro, i’m having a lot of dental work done right now, but the pain from that and from the pain in my joints and muscles and skin. those are all from fibro.  they all contributed to making me feel like i had the flu. i might as well have.

i had the chills and a fever. the chills are just awful. i rapidly switch from boiling hot to freezing. i kept having to wash my face because i was pouring sweat, both hot and cold. i was shaking and shaking. i got dehydrated because i was distracted from drinking water and eating food.

i was nauseated and exhausted. my  husband comforted me and my online friends gave me support.

this lasted from about 10am to midnight. mostly i was  wrapped  in a long sleeve shirt, a thick hoody and a big down comforter, and pillows! i threw it all off when i got hot. i sat in my nest on the couch and smoked medical marijuana which helped a lot. it made me more comfortable, mainly relaxing my muscles which were so tense from the chills.

i took my temperature and i had a low grade fever. i had a headache that was starting to turn  into a migraine. luckily it didn’t. my joints hurt a lot because i have arthritis but also because it started raining again in Northern California. Ouch! and swelling!  my poor ankles.

i managed to eat dinner because the warm food felt so good on my teeth, i guess because it was warm and of course cold air or water, ice cream, whatever, make them hurt like hell.i ate salmon and rice. it was good! Food is so good when you haven’t eaten for 12 hours!

today i woke up  to my normal pain level (about 5ish to 6ish). i got up and got ready. i felt like i was going to collapse. fatigue!  i’ve started taking the ritalin my psychiatrist wants me to take so i don’t sleep all day everyday. that’s partly from the depression and also an escape from my daily pain. so here i am writing my second post today!

hopefully i’ll have some energy to read comic books and if i could get past my art block and my tv block, things would be a lot easier. sleeping all day so frequently, you get get to feeling like your life is just slipping away. i don’t want to give into that, so i take the ritatalin even though i don’t want to, i want to sleep all day!  i’m awake and doing something productive. i’m listening to the groovy rock by The Small Faces.

expect more posts!

anxiety, art, art block, artist, chronic illness, chronic pain, comics, depression, disabled, fatigue, feelings, illness, Life

art block and life with chronic illness

i have an art block! these are always scary because as soon as it happens you worry that you ‘ll never paint or draw again. my days are so fickle, between the pain, which is different every day and my moods (i am bipolar)swinging.. thanks fibromyaia and thanks to my stupid spine not to mention my  ! since it’s nerve pain, accentuated by one’s emotions and stress levels, how much sleep you get, your anxiety, everything you can think of can cause a flare (an increased amount of pain and other symptoms of fibro, lasting for a few minutes to a few days. some days aren’t too bad and others are miserable.i’m sad to say my diabetes is out of control; i’m doing my best to  get it down, but i can’t seem to do it. i’m trying and i won’t give up.

the art block really sucks because i rely upon art therapy as part of what i need everyday. i see the art supplies and i feel a panicky need to get going on  painting. i sit down at the table  with all my painting supplies around me.

it’s useless. total fail. i get up from the table and got to the living room to read comics. i have a lot of new ones, so it’s pretty exciting. i went to the comic book store 3x this week!  i’ve been buying single issues rather than trade paperbacks, which are collect quite a few issues and are considered graphic novels. i’m trying to figure out what series i want to follow. there are so many different batman series going on and they’re all based on the batman story, tons of variations.

i’m so tired, i’m going back to bed. 😦 fatigue. so much more than  being tired. it feels like your limbs are lead and you have to sleep or you will have a panic attack.