How fucked was your day?

[chuckrh]

fairly crappy day yesterday. had a long meeting with rheumatologist. have an extremely nasty version of RA. they are giving me cancer drugs for it & had an all day infusion friday. still pretty sick from that. anyway, spine is being attacked now & the results from a MRI are in. looking like some major spine surgery in my future. future is very murky as in disability retirement looking likely in near future. been fighting that for over 5 years & am wore out. & also found out about new extra hoops for pain meds. i'm ok as i follow the rules & haven't abused anything. extra hassles & hoops of fire here or coming. the government & insurance companies involved now. of course, rather than take a look at the source of the problem, they go after the people who really need & aren't the problem. all the chemo does for me is slow down the progression of the disease & i live in constant severe pain. it never stops as all of my joints are slowly being destroyed. RA isn't cancer but it's within spitting distance. it just takes longer. sorry to vent. feeling pretty crappy & down.

[Swykk]

fairly crappy day yesterday. had a long meeting with rheumatologist. have an extremely nasty version of RA. they are giving me cancer drugs for it & had an all day infusion friday. still pretty sick from that. anyway, spine is being attacked now & the results from a MRI are in. looking like some major spine surgery in my future. future is very murky as in disability retirement looking likely in near future. been fighting that for over 5 years & am wore out. & also found out about new extra hoops for pain meds. i'm ok as i follow the rules & haven't abused anything. extra hassles & hoops of fire here or coming. the government & insurance companies involved now. of course, rather than take a look at the source of the problem, they go after the people who really need & aren't the problem. all the chemo does for me is slow down the progression of the disease & i live in constant severe pain. it never stops as all of my joints are slowly being destroyed. RA isn't cancer but it's within spitting distance. it just takes longer. sorry to vent. feeling pretty crappy & down.

I understand your frustrations. My mom has RA. I have peripheral neuropathy (very likely from chemo, spinal taps and full body radiation I had multiple times as a kid to defeat leukemia). It’s okay to vent. It’s hard being in pain every day and it’s not the most visible kind of ailment.

I’ve heard cryotherapy can be helpful for certain types of RA. Is that an option for you?

Back surgery is definitely serious business. I hope you come out feeling better.

[chuckrh]

I understand your frustrations. My mom has RA. I have peripheral neuropathy (very likely from chemo, spinal taps and full body radiation I had multiple times as a kid to defeat leukemia). It’s okay to vent. It’s hard being in pain every day and it’s not the most visible kind of ailment.

I’ve heard cryotherapy can be helpful for certain types of RA. Is that an option for you?

Back surgery is definitely serious business. I hope you come out feeling better.

Thank you. Everything is on the table as I've been through all the RA drugs. Rituxan is kind of the end of the road. All it is doing is slowing the progression a little & it gives me a bit of relief for 3 months. Then it is over the cliff. There is a brutal twist with it though, besides the side effects. I do 2 rounds every 4 months. Problem is that it lasts 3 months. The insurance companies will only allow usage every 4 months. So, in effect I'm totally fucked for 25% of the year automaticallly. & it suppresses my immune system, so now if I get a cold it tends to go to pneumonia. That happened with the NIN Vegas show. I booked the trip (with little notice if you remember). 3 days later I get a cold that quickly goes to pneumonia. By the time of the trip, I had started coming back a bit & said fuck all, I'm going. First 2 days of the trip, I was ok-ish. Luckily the show was in that period. Woke up the next day absolutely ill again. Getting home was an adventure. It was worth it though as it was a stellar show. I am going to 1 of the most highly rated rheumatologists in the northwest & he consults with other docs as my case is very rare. You never want to hear your case is interesting at the rheumatologist! I have 1 more round of poison, then will gut out the holidays. Have to change isurance end of year & after that we go into doc-a-palooza mode. I suspect big changes coming in 2018.

[allegro]

@chuckrh , sorry to hear that, it seems that we are from the same era, going into "retirement" with any physical problems just sucks.

I remember my late father-in-law telling me (God rest his soul), "the most IMPORTANT thing in life is your health" and he was SO right.

Hoping you can find a way to be happy and feel good, somehow, with this shitty medical "system" of crooked profits in this country.

I've been reading a LOT about self-healing and how that is SO powerful. My husband's cousin is on a medical marijuana Rx for a bad spinal injury, but it isn't transferrable to all states (he's a roadie for a blues guitarist). Ugh, NOT covered by insurance because it's Federally illegal.

[chuckrh]

@chuckrh, sorry to hear that, it seems that we are from the same era, going into "retirement" with any physical problems just sucks.

I remember my late father-in-law telling me (God rest his soul), "the most IMPORTANT thing in life is your health" and he was SO right.

Hoping you can find a way to be happy and feel good, somehow, with this shitty medical "system" of crooked profits in this country.



I've been reading a LOT about self-healing and how that is SO powerful. My husband's cousin is on a medical marijuana Rx for a bad spinal injury, but it isn't transferrable to all states (he's a roadie for a blues guitarist). Ugh, NOT covered by insurance because it's Federally illegal.

ya, something needs to be done about the medical marijuana. i live in washington state but my employer doesn't have to follow state law regarding that & doesn't allow medical let alone recreational. it is a big horrible multinational in the military industrial complex. i'm a ghost in the machine. i was in the music biz for 25+ years until it went away. was quite the culture shock. the only good thing is the medical insurance (getting worse every year) & the family medical leave act.

[Mantra]

Chuck, I'm so sorry to hear about your struggles. A former co-worker of mine ended up leaving his job due to this. He and I still have lunch once in a while and his stories are really similar to yours, particularly dealing with our sometimes the less-than-welcoming health care system. My heart goes out to you. Chronic pain is an terrible thing to have to deal with.

[chuckrh]

Chuck, I'm so sorry to hear about your struggles. A former co-worker of mine ended up leaving his job due to this. He and I still have lunch once in a while and his stories are really similar to yours, particularly dealing with our sometimes the less-than-welcoming health care system. My heart goes out to you. Chronic pain is an terrible thing to have to deal with.

thank you. i've put up a pretty good fight. the docs are amazed that i've operated at a high level for as long as i have. things have definitely taken a turn for the worse this year. i've been preparing for it mentally for quite awhile. i've worked hard my whole life & it will be an adjustment. my friendgirl thinks i should write. is something i've thought about for a long time. wasn't possible while working as that took all my energy & more. i have a lot of time off (some good, some bad) in december so hopefully i'll be able to recharge during the holidays. i usually go to vegas for christmas but not going to do that this year. in frugal mode, haha. i splurged on the NIN trip & was glad i did. some will think this is heresy but i think it is quite possible that trent is in his best zone ever right now. the partnership with atticus ross is an excellent one. i watched atticus fairly close at the show at times & he is an intense musician. in fact, the whole live band was stellar this year. glad i got to a standalone show rather than a festival. was worth the pain, haha.

[Boots]

I ended a relationship. I was tired of him flirting with other girls. And I have to go to physio because my back is killing me. I think I'll just hang out at ETS from now on. Everyone else in my life has let me down.

[eversonpoe]

sunday - credit card got cloned at a gas station, didn't find out until monday afternoon (after one fraudulent charge had already gone through, they flagged the second one). new card will hopefully be here by tomorrow, because i use my card for work all the time and it's the only one i have.

monday - go to the doctor for a general checkup for the first time in 12 years (i know, i know). the nurse who puts me on the scale has no knowledge of my history with eating disorders and thus sees no reason to hide my weight. apparently i'm the heaviest i have ever been, and it took all my effort not to freak out. thankfully, my doctor took note and will no longer allow my weight or BMI to be displayed in front of me or on any of the paperwork that i would normally see. also found out i may have hashimoto's, which causes the thyroid to be under-/over-active and can fluctuate between the two states, which may explain my complete lack of ability to relax, as well as why i've gained quite so much weight.

tuesday - about to leave for work and i get struck with a near-debilitating migraine (second tuesday in a row; last tuesday i spent the whole day on my couch and could barely function). my mom (a massage therapist) tried to help by rubbing my neck, but accidentally hit something that made it even worse and caused me to have light-sensitivity for the first time ever. needless to say, i spent the whole day on my parents' couch trying not to barf. hoping my doctor comes up with some solutions soon.

[Mantra]

sunday - credit card got cloned at a gas station, didn't find out until monday afternoon (after one fraudulent charge had already gone through, they flagged the second one). new card will hopefully be here by tomorrow, because i use my card for work all the time and it's the only one i have.

monday - go to the doctor for a general checkup for the first time in 12 years (i know, i know). the nurse who puts me on the scale has no knowledge of my history with eating disorders and thus sees no reason to hide my weight. apparently i'm the heaviest i have ever been, and it took all my effort not to freak out. thankfully, my doctor took note and will no longer allow my weight or BMI to be displayed in front of me or on any of the paperwork that i would normally see. also found out i may have hashimoto's, which causes the thyroid to be under-/over-active and can fluctuate between the two states, which may explain my complete lack of ability to relax, as well as why i've gained quite so much weight.

tuesday - about to leave for work and i get struck with a near-debilitating migraine (second tuesday in a row; last tuesday i spent the whole day on my couch and could barely function). my mom (a massage therapist) tried to help by rubbing my neck, but accidentally hit something that made it even worse and caused me to have light-sensitivity for the first time ever. needless to say, i spent the whole day on my parents' couch trying not to barf. hoping my doctor comes up with some solutions soon.

Wow, what a shitty week you're having. That's terrible. Hang in there! Your luck will turn around soon, I'm sure of it.

Re: the thyroid diagnosis. This may actually be good. There seems to a genetic tendency towards thyroid problems in my family, because a number of my relatives, including my mom, have been diagnosed with it. But once the meds have been sorted out, it's always turned out to be a positive development for them. Hopefully this will be a good thing for you in the long run.

[allegro]

I’ve been getting migraines for 30 years and I’ve never had one where I DIDN’T have extreme light (and sound and smell) sensitivity; it’s REALLY typical with migraines. My Mom and Grandma got migraines, and both of them had light sensitivity. It’s called photophobia, I have it even when i am not suffering from a migraine. On the other hand, I worked next a woman who got constant terrible headaches and I talked her into finally going to the doctor; she was diagnosed with Hashimoto’s and went on meds and her headaches stopped immediately. FWIW.

[Louie_Cypher]

I’ve been getting migraines for 30 years and I’ve never had one where I DIDN’T have extreme light (and sound and smell) sensitivity; it’s REALLY typical with migraines. My Mom and Grandma got migraines, and both of them had light sensitivity. It’s called photophobia, I have it even when i am not suffering from a migraine. On the other hand, I worked next a woman who got constant terrible headaches and I talked her into finally going to the doctor; she was diagnosed with Hashimoto’s and went on meds and her headaches stopped immediately. FWIW.

i know the feeling i wasn't born with enough pigment in my eyes so i had a huge problem with lights of all kinds, was bad enough that i had to wear sunglasses indoors until 3rd grade. it eventually sorted itself out. but did help with a practice of meditation and visualization for pain management that i still use to this day. I hope you can find some peace.
-Louie

[allegro]

i know the feeling i wasn't born with enough pigment in my eyes so i had a huge problem with lights of all kinds, was bad enough that i had to wear sunglasses indoors until 3rd grade. it eventually sorted itself out. but did help with a practice of meditation and visualization for pain management that i still use to this day. I hope you can find some peace.
-Louie

Thank you! ALL of the lights in my house have dimmers, the south side of my house has blackout blinds, and I can’t be on our boat without the Bimini (a sun shade for the open areas of the boat). We all have blue eyes, too, which I guess doesn’t help. And now my Mom has AMD and glaucoma, so whenever she’s here she needs BRIGHT lights to see. GAH.

At my office jobs, they’d remove a few fluorescent bulbs from each fixture in my area, I think of it as a disability and offices are really accommodating.

I’ve had to do trips to the ER for migraines and they really handle it well, they immediately adjust lighting so they aren’t shooting through my head.

I sometimes have to wear sunglasses in the supermarket, though, omg wtf.

Migraineurs (people who get migraines) have been determined to have “sensitive” brains. I didn’t know there was a name or reason for a lot of my symptoms for most of my life. I had “Alice in Wonderland” syndrome sporadically up until I was 6 years old.

http://www.migrainedisorders.org/wha...s-and-symptoms

FWIW, I tried weekly deep tissue massage therapy and I felt worse, not better.

[chuckrh]

MIGHTY FUCKED

[Louie_Cypher]

again, some visualizations things that have helped going from sharp red to soft blue. starting with a square and adding as many more sides as you can. First fifteen tarot cards.
-Louie

[allegate]

I hate migraines. I get them rarely but when I do I always go blind.

https://www.webmd.com/migraines-head...raine-basics#1

Oh and most of the time (thankfully not every time) I get pain that hits hard enough that it makes me vomit.

The only benefit I have is that I know what causes them about 90% of the time so as long as I avoid blue lights and flickering halogens I'm good.

Oh wait, it's Christmas you say?



Fuck.

[allegro]

I hate migraines. I get them rarely but when I do I always go blind.

https://www.webmd.com/migraines-head...raine-basics#1

Oh and most of the time (thankfully not every time) I get pain that hits hard enough that it makes me vomit.

Last year, the vision in my left eye suddenly got SO blurry that I couldn’t see - even with my glasses - for nearly 48 hours. I messaged my ophthalmologist and she got me an emergency appointment with a “neurologist ophthalmologist” and he said it was related to my migraines. My own neurologist later disagreed, so I have no idea wtf it was. It sucked, though, lol.

I puked through migraines for about 15 years, then that part went away. I only vomit once in a while, now, not every single time. The vomiting ones were the ones that sent me to the ER, though. Which is the LAST place you wanna be with a migraine.

Christmas lights, thankfully, don’t bug me ... EXCEPT FOR THOSE BLINKING AND FLASHING ONES GAAAAAAHHHH FUCK OFF.

[Boots]

I'm post (insert man's name). He just doesn't know it yet. Moving on. Other fish in the sea.

[playwithfire]

My uncle passed away today. He had a rare disease called IPF, but he'd just been transferred to the city where he'd be able to receive a lung transplant. Things were looking promising, he was doing well, considering he had a terminal illness, tests to determine eligibility and all of that had gone well. He was hopeful, and I'm really glad he was hopeful. My whole family was just him and my mom and me and he was in his sixties. If he'd been able to get the transplant he would have possibly had years and years ahead of him. My mom is down in Alabama and I'm in NYC (I offered to get on a plane) and I'm obviously in a really weird headspace right now because this is sudden. I consider myself so lucky to have gotten to grow up with him as an uncle and have him around, but this is so sad.

[allegro]

My condolences.

My stepdad died of IPF, two days after Christmas in 2011.

Other people who’ve died from pulmonary fibrosis:

* Marlon Brando
* Evel Knievel
* Peter Benchley
* Robert Goulet
* Jerry Lewis

Every year, IPF kills just as many people as breast cancer. It’s the terminal illness nobody has ever heard of.

https://www.prnewswire.com/news-rele...169169026.html

http://www.dailymail.co.uk/health/ar...causes-it.html

[elevenism]

Yeah, damn @playwithfire . I'm sorry to hear that.

[Boots]

I freaked when I opened a present from my sister-in-law. A large sweater and hoodie. I'm actually a medium.
I may not be a skinny supermodel, but I'm not fat. I eat healthy and work out twice a day every day.

[elevenism]

I freaked when I opened a present from my sister-in-law. A large sweater and hoodie. I'm actually a medium.
I may not be a skinny supermodel, but I'm not fat. I eat healthy and work out twice a day every day.

Shit, I usually get everyone large or xl, especially with hoodies.
I hope I haven't hurt anyone's feelings. But I LIKE baggy clothes and kind of figure others do too (especially people who are around my age.)

[eversonpoe]

Shit, I usually get everyone large or xl, especially with hoodies.
I hope I haven't hurt anyone's feelings. But I LIKE baggy clothes and kind of figure others do too (especially people who are around my age.)

i hate baggy clothes and, despite the fact that i've gained a fair amount of weight in the last couple years, i somehow still fit into small t-shirts/sweaters

[elevenism]

i hate baggy clothes and, despite the fact that i've gained a fair amount of weight in the last couple years, i somehow still fit into small t-shirts/sweaters

you realize you are basically UNdoing something nice that I said, right? That, you know, a lot of people buy large as a default and the large hoodie likely wasn't meant to be a commentary on @Boots ' size?

[eversonpoe]

you realize you are basically UNdoing something nice that I said, right? That, you know, a lot of people buy large as a default and the large hoodie likely wasn't meant to be a commentary on @Boots ' size?

i was just giving you a little anecdote as that issue relates to me. sorry!

[kel]

i've been pushing my 71-year-old mom to adopt a pet. she lives alone in a huge house. she finally did last week, a 10-week-old kitten. she named her betty after my grandma. betty was okay and adjusting until tuesday when she had a seizure. by the sounds the little kitty was making, it was obviously painful. the seizures kept coming and within a few hours her little heart stopped. she died in my mom's lap.

i doubt she'll ever adopt again. my mom can't catch a goddamn break.

[Shadaloo]

i've been pushing my 71-year-old mom to adopt a pet. she lives alone in a huge house. she finally did last week, a 10-week-old kitten. she named her betty after my grandma. betty was okay and adjusting until tuesday when she had a seizure. by the sounds the little kitty was making, it was obviously painful. the seizures kept coming and within a few hours her little heart stopped. she died in my mom's lap.

i doubt she'll ever adopt again. my mom can't catch a goddamn break.

That is fucking horrible and I am so sorry

[chuckrh]

dilly dilly

[Shadaloo]

We came home from an NYE celebration in the small hours to find that our beloved ragdoll kitty, Percy, could no longer move his rear legs. My SO took him to an emergency vet; blood clot and saddle thrombosis.

He would never have regained the use of his legs. He was put to sleep this afternoon; I rejoined them in time to say goodbye.

He was almost ten years old.