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, chronic pain, comics, diagnosis, disabled, Uncategorized

trials and tribulations

i wish i was more active on here. i rarely use my pc and i think wordpress has given up on their mobile app. so, i can’t do much on here. at the moment i feel shitty but i have time to kill, like time i really need to kill and i got a notification that my site was having a lot of activity. whatever! so, those two things led me upstairs to the PC.

i now have Achilles’s tendonitis and i have to wear the dreaded boot…

punisher-boot

as you can see there are two patches with the Punisher (a comic book character) patches. he’s one of my favorites. it’s the strangest, i mean strange, thing ever! my husband shops for little electronic components on AliExpress (chinese version of amazon, super cheap and super unreliable.). we get little tiny packages from china all the time. we got one, right after i got the boot, and these patches arrived in one of those packages. it’s one of my favorite characters and i just so happened to have something to put two velcro patches on. we just keep saying, but but what? how? wtf???? so i call it the punisher boot. i have two punisher t-shirts, so i’m super stylin’ now.

the ankle was sore for six months and i thought it was just pain from my fibromyalgia so i didn’t go to the doctor until walking was almost too much, even with my cane. the podiatrist said there was a big lump on the tendon and my ankle was very swollen. i have to wear the boot “indefinitely.”i have to go t0 12 sessions of physical therapy.

i also have a sinus infection! i had two of the most epically  bad nights last week. i felt like i was having extreme cold and hot flashes. i was panicking because it was so painful when cold(that’s because of the fibromyalgia) and then i was intensely uncomfortable when i was too hot. it was worse than nights with stomach flu or coughing all night.

i had a hysterectomy years ago and have been on hormone replacement therapy, so usually hot flashes aren’t too bad and i’ve never had cold flashes except when i get very low blood sugar (i’m diabetic), but i kept checking my sugars and they were fine. i was convinced it was crazy hormones.

finally i went to urgent care and after a two hour wait i saw a doctor who said that it was a sign that i was getting a bad infection. since my nose and eyes were runny and i’d had a couple of bad headaches she said it was a sinus infection. she gave me antibiotics which worked wonders! no more hellish nights and they caught the infection  almost immediately. i had a stuffy nose and sore lungs for two days and now i’m fine! i’ve got a lot more antibiotics and you can bet i’m going to finish them.

this isn’t what i expected to write, but i guess i didn’t know what i was going to write! it works best for me to just jump in.

diagnosis, disabled, illness, Uncategorized, writing

journey to a diagnosis, part 1

two years ago i started a journey that i’m still on. it began with a pain my  left hip. i went to my GP and she said the problem was bursitis and that my  orthopedic surgeon. should give me a cortisone shot. when i when i went the surgeon she said it wasn’t bursitis and so she wouldn’t give me the shot. i was starting to get frustrated because as it went on, the pain in my leg (it was starting to spread)  was really getting to be a problem in moving around.i started wearing compression bandages on anything that hurt. i still do that. i also wear ankle braces and compression socks. i wear compression gloves for the pain in my hands.

my hands hurt because i had four surgeries on them, some a bit unusual, for i had trigger finger in all ten fingers. highly unusual. the doctor said it was genetic (my father had it in one finger as did his brother and one of his sisters. the other reason is because i’m diabetic. the surgeries were years ago but my hands will never be the same. they swell regulary and hurt like hell. i think the surgeon was  too quick to to do the huge surgeries. but whatcha gonna do? i put ice on them all the time.g

the orthopedic surgeon sent me back to my GP who then said it was sciatica. i almost cried. she then sent me to a pain doctor. i was glad because i thought i knew what it was. was.the GP sent me to a  pain doctor. he told me to have an  MRI to see if anything is going on with my spine. he found that i have spinal stenosis. L4 and L5 were pinching the nerves, which caused the pain in my leg and my low back . my pelvis and hips hurt deep inside. they found that i had arthritis in my pelvis as we in several  parts of my spine, not to mention the severe arthritis that i have in my knees. the knees get synvisk injections 2 times a year. they help a lot.

the pain doctor prescribed medicine that would help. the pain was spreading to my whole body.he gave me a big dose of gabbapentin, cymbalta, a strong NSAID called Sulindac and norco. they helped a lot,  but not nearly enough. he decided a procedure would help. i had an epidural steroid injection in  L5.

the clinic i go to for all my doctor, built a surgery center right next to the clinic. my procedure was only a couple of months after they’d opened. it was lovely! they put me in a room for prepping me for the procedure. the nurses were so nice. there  were three of them fussing over me. it actually  was really nice. i felt well taken care of. after kind of a  long wait they wheeled me into the operating room. i layed on my stomach on the operating table. it was a conscious sedation but you could have fooled me because i was close to being unconscious. they were giving me iv versed and fentanyl. that part  was  great! lol i could feel the doctor giving me little local anesthetic around the area he was going to go in with the needle. i didn’t feel much of anything other than my legs my legs went kind of numb and jumpy. when he finished i was taken to post op where i was given after care   instructions and got dressed. it didn’t help at all.

i’ll going to stop here because it’s a very long story. i meant for these sections of the story into approximately 500 words. i went over quite a bit this time!

stay tuned for the second installment!!

abstract, abstractexpressiomism, anxiety, art, artist, chronic pain, disabled, Life, painting, stress relief, Uncategorized

damn that app!

there are so many posts i would have written if i’d been using my computer (like i am now) rather than the app on my phone or tablet. obviously there’s the typing issue. i can type pretty quickly on a real keyboard, but on a touch pad… it’s the same for everyone. more than that though, there are so many things that are broken or simply never worked in the first place, it’s extremely difficult to navigate and about as opaque as can be.

i usually am in bed or on the couch because of my fibromyalgia and spine problems. i’ve written some about some of that, but nothing about the fibro and nothing about the illnesses at all in months. a lot of things happened and i learned things, am still learning things, and finding way to deal with my new-ish (it’s been leading up to here for about 2 years)issues. that’s mainly what i wanted to talk about over these months, but i couldn’t face typing all that out on a touch keyboard. being in places like bed that are so unstructured, even with a lap desk, and a bluetooth keyboard, really doesn’t work for me. i’ve tried just about everything.  nothing compares to a PC at a big desk and a good desk chair. i’ve got that, and i’m lucky, i know.

i haven’t used this desk first because my pain was such that being on the couch was the most comfortable place to be for a very long time. the main things i do are internet, art, and sleep (and complain). i moved all my art stuff and general desk stuff downstairs (and there is a LOT of it) downstairs. i was living down there almost entirely.

i came upstairs, these last few weeks, but i have to be in bed most of the time, the pain is bad enough that even the couch is too painful to be on for long. the bed and this desk are upstairs. so i spend most of my time in bed, during bad spots, like what most of the days have been like, lately. since the computer room, where i am now (aka the red room…yes, the walls are painted dark red….)

workspace_2013_by_crazyruthie

{as i was writing i remembered this photo. that’s what it was like in 2013 before all this pain started.}

…..is on the same floor as the bedroom i come in here to do computer things or draw or just sit in the desk chair which, i forgot, has a special lumbar support feature, so it makes my back quite happy.

i’m veering off topic, not that i was on topic before, cause the only topic was supposed to be about why i hated the app and i finished that up in the first paragraph. i just kept going! and so i guess i can say anything! i’m not very good at doing things in order.

so back to where i work, spend my time, get whatever or nothing done, etc.

this is where i work now looks like..

 

{aren’t those circles hilarious?}

basically i’m using half the dining room table. i clear it all off sometimes, like the top pic or stick everything in one corner and try to take up as little room as possible, like the bottom pic. (those are my japanese watercolors, i wrote most of a post about them a couple months ago. if you want to read about them i’ll  show you.)

you want to see more workspace photos, you say? no problem, i answer!

 

i have an appointment with my new dentist today. i wasn’t going to see him until 2017 because i used up all our dental insurance for the year with 2 root canals at $1500 a pop. one of the temporary crowns got damaged and it didn’t hurt, so i was going to wait to get  it fixed. well, now it hurts and i’m not doing thanksgiving without being able to chew properly! i had a big disaster at my last dentist, they couldn’t understand my new, disabled person, needs and so i got mad and found a new dentist! so, i’ll be meeting him in 2.5 hours. i’m scared to death cause i have no idea what it will be like there, but it’s a big practice and i have a feeling they’ll be a lot more professional and they’ll have a much more modern office. still…  i’m also really worried about how much i’m hurting now, because it’s very hard just to get around the house. boy oh boy i better not get lost!!!!!!!

bye for now!