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!!

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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!

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taking care of my health

i slept so well on our new bed last night! it’s such a change; a couple of years ago i was manic and sleeping about two hours at night, maybe one or two during the day. day after day after day. i had such cold lonely mornings before the sun came up, know that my husband and dog were soundly asleep. ANYWAY now i rarely wake up earlier than 7 (going to bed at midnight). i’m grateful for it.

my husband told me the truth i didn’t want to hear, i got mad, i panicked, and then i decided to open up my mind a little bit. i’ve had all these aches and pains, bursitis, arthritis blah blah blah. i kept going to the doctor and they didn’t find anything. my husband made me realize that since i sit at my desk all day everyday, hunched over a keyboard or painting 10 hours a day was ruining my body. i kept myself from getting any better by going  down the stairs very slowly and carefully. i did everything like i was made of glass because i hurt so much.  i rarely left the house. ha! i rarely left the room i make art in.

he said, it’s all on you, you’re the only one that can turn it around. i huddled in bed on monday, crying.

then he suggested a plan of what i could do. stretching. my muscles are tight and gnarled up. so, yesterday i watched a couple yoga videos on youtube and stuff about stretching if you’re sore. it was hard to start at first but when i realized it helped a bit, i started doing stretches frequently. i can tell how short and tight the muscles are, but wow it feels good to be able to move around more! i get up from my desk and walk around the house every 15 minutes or so. it’s like my body is thawing out.

this makes me see that my depression is still going strong. has been all this time. i guess i knew that. maybe this will help. i’ll still suffer chronic pain, but it doesn’t have to be crippling.

i worry that this will only last a couple of days, i hope it’s not mania. all i want to do is relax. i don’t even know what it’s like to relax. people always say they spent the weekend “relaxing at home” or whatever. i don’t relax even after i’ve taken my klonopin, not in my sleep, not after a long session of crying.

i can’t do a yoga class because it’s too hard to leave the house, let alone be around a bunch of people. but i think i can learn a lot at home.

i’m tempted to go the chiropractor because part of the treatment is a sports massage. omg it hurts but that’s definitely the closest i’ve gotten to relaxing!

it’s scary to take responsibility for keeping your body well.

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yay! and boo!

most of my meeting with my psychiatrist was talking about the pain and that i am having a depression relapse.

i went to whole foods again and bought some incredible cookies. i ate them sitting in my car at the clinic parking lot. the appointments were too close together to go home (and the doctors are both at the same clinic) so i just hung out freaking out.

the yay is that i really do have bursitis and not something super scary. the boo is that bursitis is a much bigger deal than i thought. she gave me a big shot of anti inflammatories  and  told me to have my  orthopedic surgeon  give me a shot of cortisone in my hip and….more painkillers.

eep!

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bursitis or worse?

today is not going to be a good day. that’s a terrible way to start off the day, it’s a terrible way to approach anything. i’m feeling depressed and scared, though, so it seems like i’m beaten before i even wake up. getting out of bed is awful. when i put my feet touch the floor the pain starts. when i put my weight on them my caves hurt so bad that i have to grab the wall not to fall down. when i take a step my hip hurts so much i can hardly start walking. bending while getting dress is horrible. reaching down to tie my shoes hurts. sitting in a chair hurts.

you get the point. i made another doctor’s appointment for today. it doesn’t seem like bursitis could cause this kind of pain. the painkillers help, but they don’t make me feel like i can stand the pain. i’m scared. i have to hear what a doctor has to say. i don’t know if this has any basis in reality, but my first thought is rheumatoid arthritis. i had a good friend who had it and her pain was at this level all the damn time!

i painted something decent today, i think. it will be dry pretty soon and you can all see for yourselves. 🙂

if time permits, i’m going to make a card for my sister in law. her birthday is this weekend. she has aspergers and is very low functioning. she’s also a paranoid schizophrenic. i don’t have much contact with my inlaws and my husband really doesn’t like being around his dad.  she’s  sweet, but is the kind of person that makes others feel nervous around; she acts very differently from the social norm. she always sends birthday cards and tiny christmas gifts. we usually forget her until after her birthday. sometimes we send her amazon gift cards.

this year i decided she deserves more, more effort and more love. i’m painting some watercolor backgrounds to draw on for her. i did a few , so we’ll see.  i have a lot of gel pens, metallics and iridescent, wild colors, etc.  i think she’d really appreciate something drawn with those. i also bought some neon envelopes and i’ve got some rubber stamps. i’m going to make her something she’ll really like, and see that i put time in on it. yay!

i have to see my psychiatrist today, too. that’s not such a big deal, i guess. i don’t want to go, but who does? that’s at 11:30 and the appointment with the other doctor is 1pm. fun fun. luckily they’re in the same clinic.  wish me luck!

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this is the latest photograph in the ‘neighborhood’ series.

this series has been really good for me. i am just taking shots at places in my neighborhood (who would have guessed? lol)

that are close enough for me to walk to. that’s a big deal for me. my agoraphobia has lifted enough that i can go outside in public places. i have a purpose to be out there…getting a shot for everyday’s neighborhood photo. it’s getting to be a bit of a ritual.

it makes me feel good because i have a goal i can reach. i haven’t had a day yet that i couldn’t get a picture i liked. some are better than others, but i think that’s just how a project like this works.

it’s important for me to get out and moving around because my bursitis and arthritis (let’s write a musical!) keep me in the house, stuck in one spot, all day. i didn’t walk far, but it was enough to find a new picture and enjoy the sun and the flowers all over people’s porches. yay!

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chronic pain spreads

welcome  to chronic pain central!

i’ve been dealing with chronic pain for 20 years. lately when i get out of bed in the morning i can barely walk, i ache all the time. i thought it was because my blood sugar isn’t so great (though it’s much much better than before) or anxiety. it finally got bad enough that i made an appointment with my PCP and saw her today. she had me lay on the exam table and moved my body around. she pushed my hip back a bit and omg i yelled! pain went shooting, like a blast of lightening, from my hip to my ankle.

she says i have bursitis in my hip. she gave me A LOT of painkillers, good ones, too. you know you’re not doing well when they shove narcotic pain medicine  at you. i’m supposed to take  4 a day now.

she prescribed some topical gel that acts as an anti-inflammatory since i’m already taking tylenol and even ibuprofen if my stomach is feeling strong.

i had a feeling that the pain was too bad to be something unimportant. i started to get scared, wondering if i had rheumatoid arthritis.

the treatment options are pretty much the same as for my knees…stretch, perform certain exercises, ice it, try not to move it too much, take the pain meds. sometimes surgery is recommended.

i don’t think it’s really hit me yet, but it will seem so awful that i have a new pain that won’t go away.

i want to ask the stupidest question there is is…why me? why do i keep getting new things wrong with me?  it’s hard not to wallow in it.