Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.
There are creams that aren't steroids, I believe, It's what I used to use when I was a kid.
And basically every crohn's medication was originally a medication for psoriasis. I think my sister even takes humira now for it and it works fine for her, never even see it anymore.
Humor can be dissected as a frog can, but dies in the process.
The only non-steroidal creams I can recall are basically just super moisturizers, but I wouldn't be surprised if there were other things I just never heard about. I only ever really got support for any kind of treatment when the arthritis kicked in really bad, so that's always been the focus for me.
Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.
There are creams that aren't steroids, I believe, It's what I used to use when I was a kid.
And basically every crohn's medication was originally a medication for psoriasis. I think my sister even takes humira now for it and it works fine for her, never even see it anymore.
Fun fact, some folks taking Humira for ulcerative colitis end up with psoriasis even though they didn't have it before and it normally treats psoriasis. My doctor is current investigating if this might also happen to folks taking it for HS, like I do.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Dang, I heard about psoriasis meds causing stomach/colon problems despite being used to treat them at least some times, but never the reverse.
edit: although technically it's not causing the psoriasis, since it's only genetic iirc, it's just activating it.
It's an autoimmune issue, and since these things suppress your immune response the body can try to compensate for it and you end up in trouble.
Humor can be dissected as a frog can, but dies in the process.
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KetarCome on upstairswe're having a partyRegistered Userregular
The Sunday after Thanksgiving in 2002 I woke up with a rather irritating ringing in my right ear. Odd, because all I'd done the night before was hang out with friends and play video games for a while and then go home and bake a pie. When the ringing hadn't gone away two days later, I went to the employee health office at the hospital connected to my workplace. After some more time and trying various meds I ended up being diagnosed with sudden onset hearing loss by an ENT doc and was told that the constant ringing was a side effect of that hearing loss - something along the lines of my ear trying to compensate for the range of high frequency hearing that had disappeared. Tried a few more treatments, including some more experimental possibilities, but never recovered any of the lost hearing. I got pretty depressed because it made my physically ineligible for work that I had spent most of my life trying to get into, and that I was actually finally close to achieving (I had a conditional job offer pending some additional screening, and had to voluntarily withdraw from the process). I don't know that I've ever really properly settled into a new field since then, and have tended to try something for 1-3 years and then move on to something else in a never-ending pursuit of some level of job satisfaction. The hearing loss worsened a couple of times over the next decade, to the point that the last time I had it tested it was categorized as profound hearing loss and I was told that a hearing aid did not have a great chance of helping. No cause for the hearing loss was ever determined, but repeated MRIs over the years at least ruled out a tumor/neuroma.
This past Thanksgiving I eventually noticed that I was having to ask family members to repeat themselves quite a bit more than I usually do, but it was a crowded house with plenty of loud kids and I was in the kitchen most of the day with plenty of cooking noises going on. That weekend it felt like I was still asking my wife to repeat herself more often if she was talking to me from more than 10-12 feet away at all, so I started paying more attention to it. Over the next few days I realized that there was actually a quieter ringing in my left ear, which had never had any issues before, that I hadn't really noticed because the constant loud ringing in my right ear largely drowned it out. Also because the intensity of the ringing in my right ear has increased slightly in recent weeks.
Which leads to visiting an ENT doc today, having my hearing tested, and being told that I now have mild to moderate hearing loss in my left ear. The ear that had always had perfect hearing on all previous tests. Oh, and my right ear had gotten a bit worse yet again for good measure.
So now I get to start a 2 week course of prednisone and a diuretic in the hopes of recovering some of the lost hearing in my left ear, or at least stabilizing it. I did this twice when hearing loss was noted with the right ear, and it did nothing either time except force me to be very aware of bathroom locations and avoid long drives for 2 weeks. In the likely event that nothing improves I get to decide whether I'd like to try a hearing aid or hearing aids, or try some sort of tinnitus masking device and see if that at least helps with speech recognition and whatnot.
Hearing loss in my good ear has been my biggest self-related fear for, well, the past 17 years now. Having it happen almost exactly the same way that it did with my right ear - and especially having it also happen over Thanksgiving weekend - feels particularly cruel. It's not life threatening, and obviously things could be a lot worse, but that's not really much consolation at the moment, you know? I just...I just...fuck...
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KetarCome on upstairswe're having a partyRegistered Userregular
I'm in my office on the first floor of our house, about 2 rooms over from the front door, and I couldn't hear the doorbell just now. My kids heard it down in the basement and came up to ask me who was at the door and why I wasn't answering.
So this past Friday, I got a bit of scare from my ankylosing spondylitis. Had a flare up that caused inflammation in left eye. On Friday, I noticed my vision was blurred. At first I thought, maybe I need to give the glasses a thoroughly cleaning, but when I took them off, I noticed it might not be related to my eyewear. Then Saturday, woke up and could barely see out of my left eye. I figured it might have been related to my AS because every since I was diagnosed with it, I have let my optometrists know I had the condition and all of them have warned me that in addition to getting early cataracts, I was also at risk of getting uveitis. Also given that it seem to getting better after about two hours later, not completely because vision was still pretty shitty. Called my specialist and got told to go to the ER, but to not drive.
IMO the ER was a waste of time. The triage nurse completely wrote me off when I mentioned that it was strongly suspected it was related to my AS condition. They were insistent because they saw what might have been light scratches on my eye, that I must have gotten something it. The gel crap they gave me didn't really help and I had arranged for a trip to my optometrist on Wednesday, where they pretty much confirmed what I suspected and that it was related to the AS. Also told me not to take the gel crap because it wasn't doing anything for me. Now I'm taking steroid drops in my eye which is actually helping. Still a week or two out from know if this will completely clear up or if I'm going to have some slightly impaired vision. Vision is still blurred in my left eye, but there was a point where it was blurred and like I was looking through a consistently dirty piece of clear plastic.
The whole incident has made me despise the US healthcare system even more because I'm seeing all the ways my condition could prevent me from holding a stable job. If I don't keep it treated things can get really bad. It's absolute insanity that losing a job can really fuck me over and I shouldn't have to hope my current employer and/or insurer doesn't go down the psychopath right. I would like to have some of the stress reduce by having sane setup, where I'm not reliant on having work to make sure I can get proper care.
I'm in my office on the first floor of our house, about 2 rooms over from the front door, and I couldn't hear the doorbell just now. My kids heard it down in the basement and came up to ask me who was at the door and why I wasn't answering.
Cool. Cool, cool, cool.
That fucking sucks Ketar.
I'm sorry you're dealing with more hearing loss.
The fact it ain't fatal, don't make it any less of bummer. I hope the treatment and plan you got with your doc helps!
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KetarCome on upstairswe're having a partyRegistered Userregular
Thanks, Virgil. I had my follow-up appointment yesterday, and my hearing was the same as it was before the steroids. So, at least it hasn't gotten any worse, but it didn't go back towards normal either. Will have to schedule an appointment sometime after the New Year to try out hearing aids.
On a lighter note, the steroids improved my basic lung function just enough that I set personal high scores on every single song that I sang in Rock Band over the last week and a half or so, since I was able to sustain notes better than I ever had before :P
Good luck with everything, Mill. That sounds extremely stressful. I hope the steroid drops continue to help and get your vision back to normal.
I’ve been in a bad place mentally the last few weeks
I figured here might be a better place to post about it
I guess I’ll spoiler the background story since it’s a lot of words
Over the years as an avid music lover I’ve done damage to my ears through concerts and headphone use, but I was more cautious than most peers really, headphones rarely too loud etc, and had been wearing hearing protection / plugs to shows for the last 5 years (though not in my younger 20s), and had a few instances where I forgot them though I keep them on my keychain
I had a few ear ringing inducing experiences in my time, and probably had the mildest tinnitus (which I would sometimes notice if I was maybe in a silent room in the countryside, but barely)
I had a stupid incident in 2017 when I was congested/sick and traveling and dealt with a a pressure change / stupid attempt to equalize that likely did some more damage to my right ear, didn’t get to a doctor until after I got home who didn’t see anything clearly wrong except that I had a sinus infection, but I dealt with ear fatigue and weird pressure things for a while after that on and off
Mostly fine though
Late 2018 after some struggles with work and life I decided to see a psychiatrist after several years of talk therapy
Had always been wary of medication after a bad experience as a kid for ADHD meds, and my dad being a physician was very much of the idea that you should be careful with medication and only take when really needed
Lots of things about the stigma of mental health treatment though had been lowered through public media and private conversations
So I figured I’d give it a shot
Tried adderall a bit, somewhat helpful, but kind of crashy and didn’t help with my lack of motivation and giving a shit
So warily tried Wellbutrin / bupropion starting Jan 2019
I asked lots of questions and googled a lot about side effects and peoples experiences
Felt comfortable then, since most things said it was safe and figured I could stop it if needed
At the 150mg dose it was helpful, like a nice pep, with some minor side effects like headaches and chest tightness, but manageable and eventually acclimated
It was helpful!
2 months later, in March, we moved to 300mg (which was the big mistake, turns out, though that’s apparently the standard dose - though a lot of people get a lot more side effects too)
Turns out I also got a lot more side effects too, more head pressure, chest tightness, buzzy energy, etc. I kept at it for the month, and then at the next appointment discussed and moved back down to 150
Then I slowly started noticing that my ears had been ringing a bit more than they used to
I hadn’t noticed it earlier, because NYC is so loud in general, between street noise and HVACs and the fan in my bedroom, but with my ear on a pillow I began to notice it / plugging my ears
Then I searched about the medicine and tinnitus, because I possibly had seen it in passing, though it didn’t come up as a major side effect in my initial research
Turns out there’s not an insignificant % of people that get tinnitus from Wellbutrin, and usually it happens when going from 150mg to 300mg! And a lot of anecdotal reports and websites where people say that the ringing never went away when they stopped the meds!
So I started freaking out and paying more attention, and reading a lot online. I messaged my prescriber, who said it was possible but unlikely asked if I had hearing loss (didn’t think I did)
Got a hearing test done, which said mild upper freq loss, but sitting in that sound proof booth my tinnitus was bonkers - I just hadn’t been anywhere quiet in a while
So after another phone call with the doc, I stopped the meds
And that was mid April
After that, I was traveling in Europe - the sound was driving me wild in quiet hotel rooms and apartments we were renting, but I didn’t notice it outside or with some light white noise
So yeah, that all sucked, but I was like okay, I’ll get by, it’s not too bad
Right ear worse than left
And I went about business as usual
Listened to music in headphones (at lower volumes), still went to shows (with earplugs)
Was mostly okay
Still had major moments of despair and frustration and regret, especially when I encountered a quiet space, or had my ears blocked by a pillow, or headphones with no music
Tried to avoid freaking myself out by reading too much online yadda yadda, but got by
Didn’t seem to be getting much better sadly, but also not worse, and it bothered me less
Eventually in September I went to a new ENT because it was still bothering me a good bit, figured it couldn’t hurt
At least this doctor was a lot nicer and more compassionate than previous ones I’d seen
He cleared out some earwax as ents do, and said it might be a multilayered problem, and that sinus stuff and TMJ might be making things worse (I was congested at the time)
Got a mouth guard to help with the TMJ
Ears still rang though
Then I went to Toronto in October for a wedding
Got sick and was congested which made things worse, also having nosebleeds at the time
And I foolishly forgot my earplugs for the wedding because I didn’t take my keys (because I didn’t need my keys)
And the wedding had a live band that was LOUD and I knew it was loud
In hindsight I should’ve left the wedding to find earplugs, or at least stuffed some napkins in my ear
I knew better!
But I didn’t do those things, for some stupid reason
And I had one moment where a loud note made me feel a high pitched burst and pain in my left ear, a big “oh fuck” moment
Since then, over the following weeks, my left ear got progressively worse - the high pitched sound was a hissing / whistle I could begin to hear over other sounds, over music, etc
And in hindsight I also should have then overprotected that ear and given it a chance to possibly heal
But I didn’t, I still listened to music and went to a few shows as before
Flew to Spain and watched movies on headphones
The tinnitus was making me go bonkers in Spain too and put a damper on my vacation
And yeah, since then I notice it more and more, over other sounds, when people are talking to me - and what was once “okay, I can manage” because “I don’t know how to manage” and also the fear of making it worse set in
It’s now sound reactive, so when people talk to me, I hear the high pitched whine go up in response
)
So basically, me trying an antidepressant for a few months earlier this year gave me full on chronic tinnitus (likely building on some underlying hearing damage)
And since then I had an incident at a loud wedding that’s made it noticeably worse for the last few months
The last few weeks I started looking more at resources, websites, forums, books
I started reading stuff about habituation, because there’s no cure, and was going to start working on that, getting back into mindfulness and using CBT to help me
But in the course of that I also read lots of horror stories and anecdotal advice
People who previously had milder tinnitus, and some loud noises, or even low volume headphone use, made it way way worse
And most people who had tinnitus from Wellbutrin didn’t seem to have it fade after years if it didn’t fade after a few months
So I started spiraling in fear and depression
Fear of possibly making it way way worse in the next 30-60 years of my life (and knowing how bad it can possibly get)
Kicking myself for ever trying the medication that I had done fine without before, for not noticing the ringing earlier and getting off it sooner, etc etc
Anger over the wedding stupidity, other times I hadn’t been careful before, continuing to go about listening to headphones and concerts and not giving my ears a chance to possibly heal (who knows, maybe it might’ve gotten better a bit)
Knowing there’s no real cure and the best anyone has to offer is basically getting used to it
Knowing my ears are now more sensitive and fragile, and I have to be more careful for forever - stopped listening to music in headphones now and going to stop going to concerts for the foreseeable future (guess that part of my life is kinda done) - and fear of even things like a fire alarm or a long flight making things permanently worse
Frustration that even though I was someone who was always super careful about things like medicine or ear protection, I got unlucky and made a few mistakes and now I’m boned
And so that’s how I spent my holiday time at my parents house
I feel bad because my parents want me to not be sad and not obsess over it I’m trying but it’s tough
I’ll see some audiologist the ENT referred me to, but I’m not super hopeful
If it had stayed at the level from this summer I coulda managed and gotten used to it, but knowing I could make it worse so easily (and already have from one single slip up) is the scary part
And sound is everywhere
And I love and have always loved music but I’ve been too scared to listen to any except at a low volume on speakers (and even then, the reactivity of the sound makes me not enjoy it very much for long)
So that’s where I’m at
Any words of support or how to deal with the mental aspect would be helpful I guess
Possible rambling:
I went into a coma with what turned out to be type 1 diabetes when I was 8. I am now 47. When I first saw this thread (several years ago), I thought I would come in and just lay down the truths on all y'all, 'cause no one but no one could have as much hardship as me.
Then I saw posts from Munkus and Stale and others, and wisely, I think, kept my mouth shut.
That doesn't really have anything to do with anything, just wanted to say it.
Anyway.
I recently got on a Continuous Glucose Monitor (CGM) and insulin pump for the first. I am using the Medtronic 670G and I fucking hate it. The attention the pump demands makes me feel more like a victim of disease than the disease ever did; I feel like I work for the pump. The pump is my job, and the rest of my life can go get fucked. So there was frustration leading into last night.
Last night I refilled the pump reservoir, and I made a very fucking stupid mistake. I was raised in a fairly cheap household, always re-using things and splitting up my blood sugar testing supplies to make them last longer. So I took the last insulin pen that I had, and used it to refill the reservoir. After opening the pens, you're supposed to use or dispose of them within 28 days.
It had been longer than that.
So my blood sugar went really really high last night, over 500 (mg/dL, for those of you unfamiliar with the measurements). The normal range is 100-120, so I was way over that.I got up, and have spent the last 10 hours trying to bring it back down. At some point, I realized what my mistake had been, and made moves to correct it.
I know that I could go to the ER or urgent care and get some insulin and be monitored, but I also know what the problem is and have taken steps to correct it. It's just taking time to come back down. It's still up over 400, but that is in no small part because I spent several hours pumping ineffective insulin into myself.
I just needed to vent that I have been dealing with this fucking disease for 40 years and I fucking hate it. There's a fair argument to made that as far as complications of the disease, I've done very well. It's still the worst thing that's ever happened to me and after my own fucking stupidity last night, I'm just super frustrated and angry and, well, needed to vent.
I don't need any advice, I don't think, and will probably be fairly embarrassed at any responses (shame at being diseased is a big thing for me, I really hate talking about it and hate the fact that I had to get this all off my chest -- don't ask me how that jibes with thinking I knew it all as earlier stated; I couldn't explain that if I tried). So. You know. Feel free to let this slide by.
I don't have a snappy conclusion for this. I guess that's what makes it a ramble. I probably won't die today, I think that's the best I can do.
UPDATE: While my mixing of older medicine may have been really really stupid, it doesn't seem that was the issue. I got my blood sugar to come down quite a bit, and then it started going back up. I did some research, and it seems that the tubing that delivers the insulin can get kinked subcutaneously. Which means I didn't know how much medicine I was getting. I have changed out the tubing, and log it on to another thing to hate about this machine.
I went into a coma with what turned out to be type 1 diabetes when I was 8. I am now 47. When I first saw this thread (several years ago), I thought I would come in and just lay down the truths on all y'all, 'cause no one but no one could have as much hardship as me.
Then I saw posts from Munkus and Stale and others, and wisely, I think, kept my mouth shut.
That doesn't really have anything to do with anything, just wanted to say it.
Anyway.
I recently got on a Continuous Glucose Monitor (CGM) and insulin pump for the first. I am using the Medtronic 670G and I fucking hate it. The attention the pump demands makes me feel more like a victim of disease than the disease ever did; I feel like I work for the pump. The pump is my job, and the rest of my life can go get fucked. So there was frustration leading into last night.
Last night I refilled the pump reservoir, and I made a very fucking stupid mistake. I was raised in a fairly cheap household, always re-using things and splitting up my blood sugar testing supplies to make them last longer. So I took the last insulin pen that I had, and used it to refill the reservoir. After opening the pens, you're supposed to use or dispose of them within 28 days.
It had been longer than that.
So my blood sugar went really really high last night, over 500 (mg/dL, for those of you unfamiliar with the measurements). The normal range is 100-120, so I was way over that.I got up, and have spent the last 10 hours trying to bring it back down. At some point, I realized what my mistake had been, and made moves to correct it.
I know that I could go to the ER or urgent care and get some insulin and be monitored, but I also know what the problem is and have taken steps to correct it. It's just taking time to come back down. It's still up over 400, but that is in no small part because I spent several hours pumping ineffective insulin into myself.
I just needed to vent that I have been dealing with this fucking disease for 40 years and I fucking hate it. There's a fair argument to made that as far as complications of the disease, I've done very well. It's still the worst thing that's ever happened to me and after my own fucking stupidity last night, I'm just super frustrated and angry and, well, needed to vent.
I don't need any advice, I don't think, and will probably be fairly embarrassed at any responses (shame at being diseased is a big thing for me, I really hate talking about it and hate the fact that I had to get this all off my chest -- don't ask me how that jibes with thinking I knew it all as earlier stated; I couldn't explain that if I tried). So. You know. Feel free to let this slide by.
I don't have a snappy conclusion for this. I guess that's what makes it a ramble. I probably won't die today, I think that's the best I can do.
UPDATE: While my mixing of older medicine may have been really really stupid, it doesn't seem that was the issue. I got my blood sugar to come down quite a bit, and then it started going back up. I did some research, and it seems that the tubing that delivers the insulin can get kinked subcutaneously. Which means I didn't know how much medicine I was getting. I have changed out the tubing, and log it on to another thing to hate about this machine.
This might be a really stupid question, but... if you hate the pump that much, and you were doing well without it, can you go back to managing your insulin yourself?
I need to transition off, and as numbers and delivery has changed, I'd really be more comfortable doing that under a doctor's -- an endocrinologist's -- care and supervision. I have an appointment with a new regular doc this month, and will need a referral to a new endo. It'll be a while, but yeah, that's definitely the plan.
I probably could have gotten off of it on my own early on, but now that it's been a few months, yeah. Definitely want someone else involved. Not the least for prescriptions for other delivery methods.
not that I'm sure anyone in this thread would think otherwise, but jesus I need america to get it together on the socialized healthcare front. through a series of bullshit, mental and physical illness, and frankly believing someone I really shouldn't have, I find myself stuck in Kentucky - which we moved back to in large part because it is an expanded Medicaid state - and my treatment options here have been abysmal. so far they have denied every single medication I've been prescribed, including omeprazole. I haven't been able to find a psychiatrist within a reasonable distance that even believes in ADHD, much less treats it. my husband and I have had repeated conversations about possibly going inpatient for a mental health hold, but the primary psychiatrist at the nearby hospital doesn't believe in ADHD, and it's hard to believe I'll get useful treatment from someone who doesn't believe in my primary diagnosis. I've been trying to get stelara approved since September and my dermatologist finally gave up in January and put me on Enbrel because it was all medicaid will allow me access to as a biologic, despite years of treatment history and failure on other meds. I FINALLY got my first dose today. I've had multiple ovarian cysts since we moved here, 3cm or larger, and the obgyn hand-waved it away as "well, periods can be painful." I'm insanely isolated here on top of it all, which I guess is why I'm here venting about it. I guess I just... needed to reach out socially to somebody? try to force myself to engage with other human beings? ones who would also find it absolutely appalling that my doctor's office will only work on prior auths on Wednesdays and no other day of the week?
That's completely and utterly fucked, @cabsy . I'm really sorry you're being put through all that garbage, it's completely unfair and unreasonable. It should be criminal! We have such a terrible system.
not that I'm sure anyone in this thread would think otherwise, but jesus I need america to get it together on the socialized healthcare front. through a series of bullshit, mental and physical illness, and frankly believing someone I really shouldn't have, I find myself stuck in Kentucky - which we moved back to in large part because it is an expanded Medicaid state - and my treatment options here have been abysmal. so far they have denied every single medication I've been prescribed, including omeprazole. I haven't been able to find a psychiatrist within a reasonable distance that even believes in ADHD, much less treats it. my husband and I have had repeated conversations about possibly going inpatient for a mental health hold, but the primary psychiatrist at the nearby hospital doesn't believe in ADHD, and it's hard to believe I'll get useful treatment from someone who doesn't believe in my primary diagnosis. I've been trying to get stelara approved since September and my dermatologist finally gave up in January and put me on Enbrel because it was all medicaid will allow me access to as a biologic, despite years of treatment history and failure on other meds. I FINALLY got my first dose today. I've had multiple ovarian cysts since we moved here, 3cm or larger, and the obgyn hand-waved it away as "well, periods can be painful." I'm insanely isolated here on top of it all, which I guess is why I'm here venting about it. I guess I just... needed to reach out socially to somebody? try to force myself to engage with other human beings? ones who would also find it absolutely appalling that my doctor's office will only work on prior auths on Wednesdays and no other day of the week?
That is 100% garbage having to put up with all that. You sound like you're dealing with a lot of the major things my wife and I are, only not split between two people and WA State Medicaid is much nicer.
She's had Poly-Cystic Ovarian Syndrome for a long long time and got fuckall response from people for a long time besides a shrug, brushed off over being a whiny baby since most people don't even feel it, or told the only recourse is removal which gets immediately shutdown by Christian Patriarchal policy calling it a cosmetic choice and "I know you have a kid already and don't want more but what if you change your miiiiiiind I mean really!"
It was exceedingly debilitating pain for her, very often and for long stretches of time. That being said, she's now pretty much entirely pain free after getting a new OBGYN who was willing to push for removal but wanted to try physical therapy first, since surgery can cause worse scar tissue and just make the pain worse indefinitely. Sometimes the pain experienced is from the cysts directly, but very often it's either the scar tissue left behind by them, or as in her case, it interfered with a ligament from the hip to groin. Both of which can be treated by physical therapy through a pelvic floor physical therapist. Unless you've already ruled that out as a possibility I highly recommend asking about it, for her all it took was a fairly simple strain-counterstrain release technique, for scar tissue it may not be so simple but should at least help. Even if it didn't work for her, it would have been nice to have someone think to mention it in the 15 years she's dealt with it, it's not a high cost to try out.
I just started Stelara earlier this month after getting no response from Xeljanz. In the months I had to try it out I discovered hooooooly hell my baseline psoriasis and arthritis are waaaay worse than when I started trying to find treatment. The best I ever felt was taking methotrexate, which being very cheap was the first time I had to try. Elevated liver enzyme tests ruled that out pretty fast, though. Seeing how much worse things are untreated now, I wonder if any of the ones that worked moderately would even do that any more. I'm running out of meaningful options after failing so many. It sure was great hearing my doctor talk about how most of the meds being designed for RA means they don't always work well for PA, and for lucky maybe %15 the ones intended primarily for PA also just don't work well. Not feelin' great about my future prospects.
In fact, things are hurting quite a bit after doing the dishes so I apologize if that's rambly and unclear.
Just got (it came in the mail Friday or Saturday) a letter saying that I have permission from my insurance to get some medical testing done within a specific set of dates. That's good to know, because I had those tests two weeks ago, which is also the time they gave me permission for.
Good timing, guys. Maybe next time spring for the express service.
not that I'm sure anyone in this thread would think otherwise, but jesus I need america to get it together on the socialized healthcare front. through a series of bullshit, mental and physical illness, and frankly believing someone I really shouldn't have, I find myself stuck in Kentucky - which we moved back to in large part because it is an expanded Medicaid state - and my treatment options here have been abysmal. so far they have denied every single medication I've been prescribed, including omeprazole. I haven't been able to find a psychiatrist within a reasonable distance that even believes in ADHD, much less treats it. my husband and I have had repeated conversations about possibly going inpatient for a mental health hold, but the primary psychiatrist at the nearby hospital doesn't believe in ADHD, and it's hard to believe I'll get useful treatment from someone who doesn't believe in my primary diagnosis. I've been trying to get stelara approved since September and my dermatologist finally gave up in January and put me on Enbrel because it was all medicaid will allow me access to as a biologic, despite years of treatment history and failure on other meds. I FINALLY got my first dose today. I've had multiple ovarian cysts since we moved here, 3cm or larger, and the obgyn hand-waved it away as "well, periods can be painful." I'm insanely isolated here on top of it all, which I guess is why I'm here venting about it. I guess I just... needed to reach out socially to somebody? try to force myself to engage with other human beings? ones who would also find it absolutely appalling that my doctor's office will only work on prior auths on Wednesdays and no other day of the week?
That is 100% garbage having to put up with all that. You sound like you're dealing with a lot of the major things my wife and I are, only not split between two people and WA State Medicaid is much nicer.
She's had Poly-Cystic Ovarian Syndrome for a long long time and got fuckall response from people for a long time besides a shrug, brushed off over being a whiny baby since most people don't even feel it, or told the only recourse is removal which gets immediately shutdown by Christian Patriarchal policy calling it a cosmetic choice and "I know you have a kid already and don't want more but what if you change your miiiiiiind I mean really!"
It was exceedingly debilitating pain for her, very often and for long stretches of time. That being said, she's now pretty much entirely pain free after getting a new OBGYN who was willing to push for removal but wanted to try physical therapy first, since surgery can cause worse scar tissue and just make the pain worse indefinitely. Sometimes the pain experienced is from the cysts directly, but very often it's either the scar tissue left behind by them, or as in her case, it interfered with a ligament from the hip to groin. Both of which can be treated by physical therapy through a pelvic floor physical therapist. Unless you've already ruled that out as a possibility I highly recommend asking about it, for her all it took was a fairly simple strain-counterstrain release technique, for scar tissue it may not be so simple but should at least help. Even if it didn't work for her, it would have been nice to have someone think to mention it in the 15 years she's dealt with it, it's not a high cost to try out.
I just started Stelara earlier this month after getting no response from Xeljanz. In the months I had to try it out I discovered hooooooly hell my baseline psoriasis and arthritis are waaaay worse than when I started trying to find treatment. The best I ever felt was taking methotrexate, which being very cheap was the first time I had to try. Elevated liver enzyme tests ruled that out pretty fast, though. Seeing how much worse things are untreated now, I wonder if any of the ones that worked moderately would even do that any more. I'm running out of meaningful options after failing so many. It sure was great hearing my doctor talk about how most of the meds being designed for RA means they don't always work well for PA, and for lucky maybe %15 the ones intended primarily for PA also just don't work well. Not feelin' great about my future prospects.
In fact, things are hurting quite a bit after doing the dishes so I apologize if that's rambly and unclear.
this is why I'm extra stressed about having to switch off Stelara to another med - once you move away from one, there's no guarantee that going back on it will be as effective, so they really like to reduce the amount you're jumping between treatment methods and medicine types. but hey, it's critical that we follow the rules of the insurance company, not actual medical best practice!
I hope stelara works for you! it did very well for me. I'm fat, and it is one of the few biologics that has weight-dependent dosing. my only issue was between weeks 8 and 12 I started to have a little return of symptoms, nothing compared to no treatment at all, but apparently they can up the dosing to every 8 weeks if it is a substantial problem? it's one of the few things that I see as a positive about having to try the Enbrel - it is twice a week for me, so I'm hopeful that I won't have any of the lag period where it isn't as effective. who knows.
someday when I have the energy to shop around for another OBGYN, I will look into physical therapy! that's an interesting idea that I have literally never heard of. you'd think they'd want to encourage it, on account of after the bowel perforation I now have to visit the ER for any substantial lower abdominal pain, which means any time I have a gnarly cyst I'm headed to the ER. when we first moved to Texas, I scared the shit out of a radiology tech by casually saying it was my tenth CT in less than a year. apparently they worry about things like "radiation".
uhhh I do hate to be a paranoid asshole and possibly rule out treatments that could work for others, but I will mention (since they're moving you around on meds) that they put me on remicade for my psoriasis and PA and I have been told by multiple providers, across multiple specialties, that it was very likely the contributing factor in my bowel perforation and septic abdominal infection. which I had at 34. which is insanely young and probably why it went untreated for as long as it did and got as serious as it did - I kept getting brushed off every time I went to the ER, until the time that the ER doctor thought I was going to die. if you end up having no other options and they move you onto remicade, by all means try it, but pay serious attention to any lower abdominal pain and do not let people brush you off about it. if I'd been more assertive about it, I might still have those 30+ centimeters of bowel and not had a 17.5 centimeter hernia. end rant.
I have long been impatient and pissy with doctors who don't listen to me. I have only grown more bitter as I grow older since I have gotten better diagnosis from different doctors. I guess I shouldn't be surprised that the super rare genetic condition I was born with wasn't caught earlier since it is a near one in a million. On the other hand, my current primary care nurse practitioner kept pushing me into specialists that told me nothing was wrong because she knew something was up even if she didn't know what it was. That seems pretty simple to me? Like, just trusting what I am saying is a real thing that I need help with. Between her and a nurse who stopped to explain why the doctors were confused I have made tremendous gains in my life. Maybe the lesson here is nurses are better than doctors? I dunno.
The lesson I have taken from it on a more personal level has been to just listen to people. It's something I have had occasion to make use of as a therapist if I can be indulged for a bit of bragging. I met with someone who was getting out patient hell for suicidal and homicidal thoughts but was very cagey about it. Long story short the last several doctors decided the best treatment for what was clearly postpartum depression was to hospitalize the woman. I couldn't confirm until later that yeah apparently postpartum depression last for years untreated.
Just listen to people! It's not hard! They do the work for you!
I get mild but chronic dermatitis and recently got a prescription for a stronger steroid cream.
Doctor: This will almost certainly clear it up, but you might need to give it a while, like eight weeks or so.
Pharmacist: Do not use this stuff for more than a week, two weeks absolute maximum. PROMISE ME YOU WON'T GO OVER (okay they didn't say that bit but they were pretty emphatic).
This isn't the first time I've noticed this disparity between pharmacists' and doctors' recommended use for drugs. I usually just smile and nod and go with whichever time is longer.
I've developed an allergy to cold! I've been told I shouldn't drink cold things or my throat may close up!
fuck you, body, I needs my bubble tea.
What the hell, that sucks.
Oh, and that reminds me, I've apparently developed an allergy to something in wine, which gives me a right-behind-the-eyes headache if I drink even one glass. I'm not a big drinker anyway, but dammit, I fucking liked wine.
There's probably someone crazy enough to do a warm boba tea in the Bay Area.
oh you can get hot boba everywhere, I just don't like it very much.
tbh while the iced-drink related itchy mouth/throat/hands/fingers sucks, I think the worst manifestation so far was breaking out in hives in the surf the other week. I may have to pull the full-body wetsuit out of storage.
@Butler my sister has an autoimmune response to wine and can now only drink gin. She's very upset and refuses to be consoled.
There's probably someone crazy enough to do a warm boba tea in the Bay Area.
oh you can get hot boba everywhere, I just don't like it very much.
tbh while the iced-drink related itchy mouth/throat/hands/fingers sucks, I think the worst manifestation so far was breaking out in hives in the surf the other week. I may have to pull the full-body wetsuit out of storage.
@Butler my sister has an autoimmune response to wine and can now only drink gin. She's very upset and refuses to be consoled.
Yikes. Is she gluten intolerant too or are beers an option?
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Hmm.. While most distilled spirits won't have the same residual sugar in wines, nothing stops you from shaking in a little syrup and calling it a cocktail. Or maybe go with aged rum, the secret being most of those are dosed with sugar.
I get mild but chronic dermatitis and recently got a prescription for a stronger steroid cream.
Doctor: This will almost certainly clear it up, but you might need to give it a while, like eight weeks or so.
Pharmacist: Do not use this stuff for more than a week, two weeks absolute maximum. PROMISE ME YOU WON'T GO OVER (okay they didn't say that bit but they were pretty emphatic).
This isn't the first time I've noticed this disparity between pharmacists' and doctors' recommended use for drugs. I usually just smile and nod and go with whichever time is longer.
What they mean by 2 weeks maximum is likely don't use it more than two weeks continuously, if you do stop for a week then do it again if you need.
That's what I've always been told to do with the fairly strong topical steroid ointments I've been prescribed for my psoriasis.
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Is cognac/brandy a no go too? Might be more to her taste than whisky.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Beer is often from being allergic to barley, my father can't drink it for that reason (he uh....overexposed himself to it in college)
Humor can be dissected as a frog can, but dies in the process.
It’s been almost a year since I first took the dosage of meds that gave me the tinnitus (tho I was on that dose for a whole month and then down to the lower dose a few more weeks before I noticed and made the connection and stopped - which sux also because I’ve read some anecdotal cases of people who were on it for < 2 weeks and stopped and then it faded)
But it seems to be permanent for me
And it’s been ~4months since it started getting way worse post loud wedding where I forgot earplugs, which is what took it from annoying to scary / life impacting
I’m out of my acute depression and despair about it that I had at the start of this year but it still sucks, though I’m doing better
It sucks that now it’s always there and I notice it constantly, and I’ve been avoiding headphones and concerts and etc
Or anywhere that could be too loud really, though I carry my earplugs always - but it’s sometimes just scary to be out in the world
I miss having music in my life in the same way I used to because it was a super big part of my life
And I still just fear it getting worse and miss my life before, just one year ago, and know that my future is changed permanently primarily as a result of a dumb medication
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Hmm.. While most distilled spirits won't have the same residual sugar in wines, nothing stops you from shaking in a little syrup and calling it a cocktail. Or maybe go with aged rum, the secret being most of those are dosed with sugar.
She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Is cognac/brandy a no go too? Might be more to her taste than whisky.
Y'all, tynic is perfectly capable of figuring out how to get someone hammered, especially a member of her own family.
Posts
There are creams that aren't steroids, I believe, It's what I used to use when I was a kid.
And basically every crohn's medication was originally a medication for psoriasis. I think my sister even takes humira now for it and it works fine for her, never even see it anymore.
Fun fact, some folks taking Humira for ulcerative colitis end up with psoriasis even though they didn't have it before and it normally treats psoriasis. My doctor is current investigating if this might also happen to folks taking it for HS, like I do.
Guess why I know he's looking into it.
edit: although technically it's not causing the psoriasis, since it's only genetic iirc, it's just activating it.
It's an autoimmune issue, and since these things suppress your immune response the body can try to compensate for it and you end up in trouble.
This past Thanksgiving I eventually noticed that I was having to ask family members to repeat themselves quite a bit more than I usually do, but it was a crowded house with plenty of loud kids and I was in the kitchen most of the day with plenty of cooking noises going on. That weekend it felt like I was still asking my wife to repeat herself more often if she was talking to me from more than 10-12 feet away at all, so I started paying more attention to it. Over the next few days I realized that there was actually a quieter ringing in my left ear, which had never had any issues before, that I hadn't really noticed because the constant loud ringing in my right ear largely drowned it out. Also because the intensity of the ringing in my right ear has increased slightly in recent weeks.
Which leads to visiting an ENT doc today, having my hearing tested, and being told that I now have mild to moderate hearing loss in my left ear. The ear that had always had perfect hearing on all previous tests. Oh, and my right ear had gotten a bit worse yet again for good measure.
So now I get to start a 2 week course of prednisone and a diuretic in the hopes of recovering some of the lost hearing in my left ear, or at least stabilizing it. I did this twice when hearing loss was noted with the right ear, and it did nothing either time except force me to be very aware of bathroom locations and avoid long drives for 2 weeks. In the likely event that nothing improves I get to decide whether I'd like to try a hearing aid or hearing aids, or try some sort of tinnitus masking device and see if that at least helps with speech recognition and whatnot.
Hearing loss in my good ear has been my biggest self-related fear for, well, the past 17 years now. Having it happen almost exactly the same way that it did with my right ear - and especially having it also happen over Thanksgiving weekend - feels particularly cruel. It's not life threatening, and obviously things could be a lot worse, but that's not really much consolation at the moment, you know? I just...I just...fuck...
Cool. Cool, cool, cool.
IMO the ER was a waste of time. The triage nurse completely wrote me off when I mentioned that it was strongly suspected it was related to my AS condition. They were insistent because they saw what might have been light scratches on my eye, that I must have gotten something it. The gel crap they gave me didn't really help and I had arranged for a trip to my optometrist on Wednesday, where they pretty much confirmed what I suspected and that it was related to the AS. Also told me not to take the gel crap because it wasn't doing anything for me. Now I'm taking steroid drops in my eye which is actually helping. Still a week or two out from know if this will completely clear up or if I'm going to have some slightly impaired vision. Vision is still blurred in my left eye, but there was a point where it was blurred and like I was looking through a consistently dirty piece of clear plastic.
The whole incident has made me despise the US healthcare system even more because I'm seeing all the ways my condition could prevent me from holding a stable job. If I don't keep it treated things can get really bad. It's absolute insanity that losing a job can really fuck me over and I shouldn't have to hope my current employer and/or insurer doesn't go down the psychopath right. I would like to have some of the stress reduce by having sane setup, where I'm not reliant on having work to make sure I can get proper care.
battletag: Millin#1360
Nice chart to figure out how honest a news source is.
That fucking sucks Ketar.
I'm sorry you're dealing with more hearing loss.
The fact it ain't fatal, don't make it any less of bummer. I hope the treatment and plan you got with your doc helps!
On a lighter note, the steroids improved my basic lung function just enough that I set personal high scores on every single song that I sang in Rock Band over the last week and a half or so, since I was able to sustain notes better than I ever had before :P
Good luck with everything, Mill. That sounds extremely stressful. I hope the steroid drops continue to help and get your vision back to normal.
I’ve been in a bad place mentally the last few weeks
I figured here might be a better place to post about it
I guess I’ll spoiler the background story since it’s a lot of words
I had a few ear ringing inducing experiences in my time, and probably had the mildest tinnitus (which I would sometimes notice if I was maybe in a silent room in the countryside, but barely)
I had a stupid incident in 2017 when I was congested/sick and traveling and dealt with a a pressure change / stupid attempt to equalize that likely did some more damage to my right ear, didn’t get to a doctor until after I got home who didn’t see anything clearly wrong except that I had a sinus infection, but I dealt with ear fatigue and weird pressure things for a while after that on and off
Mostly fine though
Late 2018 after some struggles with work and life I decided to see a psychiatrist after several years of talk therapy
Had always been wary of medication after a bad experience as a kid for ADHD meds, and my dad being a physician was very much of the idea that you should be careful with medication and only take when really needed
Lots of things about the stigma of mental health treatment though had been lowered through public media and private conversations
So I figured I’d give it a shot
Tried adderall a bit, somewhat helpful, but kind of crashy and didn’t help with my lack of motivation and giving a shit
So warily tried Wellbutrin / bupropion starting Jan 2019
I asked lots of questions and googled a lot about side effects and peoples experiences
Felt comfortable then, since most things said it was safe and figured I could stop it if needed
At the 150mg dose it was helpful, like a nice pep, with some minor side effects like headaches and chest tightness, but manageable and eventually acclimated
It was helpful!
2 months later, in March, we moved to 300mg (which was the big mistake, turns out, though that’s apparently the standard dose - though a lot of people get a lot more side effects too)
Turns out I also got a lot more side effects too, more head pressure, chest tightness, buzzy energy, etc. I kept at it for the month, and then at the next appointment discussed and moved back down to 150
Then I slowly started noticing that my ears had been ringing a bit more than they used to
I hadn’t noticed it earlier, because NYC is so loud in general, between street noise and HVACs and the fan in my bedroom, but with my ear on a pillow I began to notice it / plugging my ears
Then I searched about the medicine and tinnitus, because I possibly had seen it in passing, though it didn’t come up as a major side effect in my initial research
Turns out there’s not an insignificant % of people that get tinnitus from Wellbutrin, and usually it happens when going from 150mg to 300mg! And a lot of anecdotal reports and websites where people say that the ringing never went away when they stopped the meds!
So I started freaking out and paying more attention, and reading a lot online. I messaged my prescriber, who said it was possible but unlikely asked if I had hearing loss (didn’t think I did)
Got a hearing test done, which said mild upper freq loss, but sitting in that sound proof booth my tinnitus was bonkers - I just hadn’t been anywhere quiet in a while
So after another phone call with the doc, I stopped the meds
And that was mid April
After that, I was traveling in Europe - the sound was driving me wild in quiet hotel rooms and apartments we were renting, but I didn’t notice it outside or with some light white noise
So yeah, that all sucked, but I was like okay, I’ll get by, it’s not too bad
Right ear worse than left
And I went about business as usual
Listened to music in headphones (at lower volumes), still went to shows (with earplugs)
Was mostly okay
Still had major moments of despair and frustration and regret, especially when I encountered a quiet space, or had my ears blocked by a pillow, or headphones with no music
Tried to avoid freaking myself out by reading too much online yadda yadda, but got by
Didn’t seem to be getting much better sadly, but also not worse, and it bothered me less
Eventually in September I went to a new ENT because it was still bothering me a good bit, figured it couldn’t hurt
At least this doctor was a lot nicer and more compassionate than previous ones I’d seen
He cleared out some earwax as ents do, and said it might be a multilayered problem, and that sinus stuff and TMJ might be making things worse (I was congested at the time)
Got a mouth guard to help with the TMJ
Ears still rang though
Then I went to Toronto in October for a wedding
Got sick and was congested which made things worse, also having nosebleeds at the time
And I foolishly forgot my earplugs for the wedding because I didn’t take my keys (because I didn’t need my keys)
And the wedding had a live band that was LOUD and I knew it was loud
In hindsight I should’ve left the wedding to find earplugs, or at least stuffed some napkins in my ear
I knew better!
But I didn’t do those things, for some stupid reason
And I had one moment where a loud note made me feel a high pitched burst and pain in my left ear, a big “oh fuck” moment
Since then, over the following weeks, my left ear got progressively worse - the high pitched sound was a hissing / whistle I could begin to hear over other sounds, over music, etc
And in hindsight I also should have then overprotected that ear and given it a chance to possibly heal
But I didn’t, I still listened to music and went to a few shows as before
Flew to Spain and watched movies on headphones
The tinnitus was making me go bonkers in Spain too and put a damper on my vacation
And yeah, since then I notice it more and more, over other sounds, when people are talking to me - and what was once “okay, I can manage” because “I don’t know how to manage” and also the fear of making it worse set in
It’s now sound reactive, so when people talk to me, I hear the high pitched whine go up in response
)
So basically, me trying an antidepressant for a few months earlier this year gave me full on chronic tinnitus (likely building on some underlying hearing damage)
And since then I had an incident at a loud wedding that’s made it noticeably worse for the last few months
The last few weeks I started looking more at resources, websites, forums, books
I started reading stuff about habituation, because there’s no cure, and was going to start working on that, getting back into mindfulness and using CBT to help me
But in the course of that I also read lots of horror stories and anecdotal advice
People who previously had milder tinnitus, and some loud noises, or even low volume headphone use, made it way way worse
And most people who had tinnitus from Wellbutrin didn’t seem to have it fade after years if it didn’t fade after a few months
So I started spiraling in fear and depression
Fear of possibly making it way way worse in the next 30-60 years of my life (and knowing how bad it can possibly get)
Kicking myself for ever trying the medication that I had done fine without before, for not noticing the ringing earlier and getting off it sooner, etc etc
Anger over the wedding stupidity, other times I hadn’t been careful before, continuing to go about listening to headphones and concerts and not giving my ears a chance to possibly heal (who knows, maybe it might’ve gotten better a bit)
Knowing there’s no real cure and the best anyone has to offer is basically getting used to it
Knowing my ears are now more sensitive and fragile, and I have to be more careful for forever - stopped listening to music in headphones now and going to stop going to concerts for the foreseeable future (guess that part of my life is kinda done) - and fear of even things like a fire alarm or a long flight making things permanently worse
Frustration that even though I was someone who was always super careful about things like medicine or ear protection, I got unlucky and made a few mistakes and now I’m boned
And so that’s how I spent my holiday time at my parents house
I feel bad because my parents want me to not be sad and not obsess over it I’m trying but it’s tough
I’ll see some audiologist the ENT referred me to, but I’m not super hopeful
If it had stayed at the level from this summer I coulda managed and gotten used to it, but knowing I could make it worse so easily (and already have from one single slip up) is the scary part
And sound is everywhere
And I love and have always loved music but I’ve been too scared to listen to any except at a low volume on speakers (and even then, the reactivity of the sound makes me not enjoy it very much for long)
So that’s where I’m at
Any words of support or how to deal with the mental aspect would be helpful I guess
Like, if it's painful to be in the performance space then you're over-amped, seriously people wtf
I went into a coma with what turned out to be type 1 diabetes when I was 8. I am now 47. When I first saw this thread (several years ago), I thought I would come in and just lay down the truths on all y'all, 'cause no one but no one could have as much hardship as me.
Then I saw posts from Munkus and Stale and others, and wisely, I think, kept my mouth shut.
That doesn't really have anything to do with anything, just wanted to say it.
Anyway.
I recently got on a Continuous Glucose Monitor (CGM) and insulin pump for the first. I am using the Medtronic 670G and I fucking hate it. The attention the pump demands makes me feel more like a victim of disease than the disease ever did; I feel like I work for the pump. The pump is my job, and the rest of my life can go get fucked. So there was frustration leading into last night.
Last night I refilled the pump reservoir, and I made a very fucking stupid mistake. I was raised in a fairly cheap household, always re-using things and splitting up my blood sugar testing supplies to make them last longer. So I took the last insulin pen that I had, and used it to refill the reservoir. After opening the pens, you're supposed to use or dispose of them within 28 days.
It had been longer than that.
So my blood sugar went really really high last night, over 500 (mg/dL, for those of you unfamiliar with the measurements). The normal range is 100-120, so I was way over that.I got up, and have spent the last 10 hours trying to bring it back down. At some point, I realized what my mistake had been, and made moves to correct it.
I know that I could go to the ER or urgent care and get some insulin and be monitored, but I also know what the problem is and have taken steps to correct it. It's just taking time to come back down. It's still up over 400, but that is in no small part because I spent several hours pumping ineffective insulin into myself.
I just needed to vent that I have been dealing with this fucking disease for 40 years and I fucking hate it. There's a fair argument to made that as far as complications of the disease, I've done very well. It's still the worst thing that's ever happened to me and after my own fucking stupidity last night, I'm just super frustrated and angry and, well, needed to vent.
I don't need any advice, I don't think, and will probably be fairly embarrassed at any responses (shame at being diseased is a big thing for me, I really hate talking about it and hate the fact that I had to get this all off my chest -- don't ask me how that jibes with thinking I knew it all as earlier stated; I couldn't explain that if I tried). So. You know. Feel free to let this slide by.
I don't have a snappy conclusion for this. I guess that's what makes it a ramble. I probably won't die today, I think that's the best I can do.
UPDATE: While my mixing of older medicine may have been really really stupid, it doesn't seem that was the issue. I got my blood sugar to come down quite a bit, and then it started going back up. I did some research, and it seems that the tubing that delivers the insulin can get kinked subcutaneously. Which means I didn't know how much medicine I was getting. I have changed out the tubing, and log it on to another thing to hate about this machine.
This might be a really stupid question, but... if you hate the pump that much, and you were doing well without it, can you go back to managing your insulin yourself?
I need to transition off, and as numbers and delivery has changed, I'd really be more comfortable doing that under a doctor's -- an endocrinologist's -- care and supervision. I have an appointment with a new regular doc this month, and will need a referral to a new endo. It'll be a while, but yeah, that's definitely the plan.
I probably could have gotten off of it on my own early on, but now that it's been a few months, yeah. Definitely want someone else involved. Not the least for prescriptions for other delivery methods.
And the cysts? How hard would it be for them to do an ultrasound, fucking seriously?
I'm sorry @cabsy; that entire situation is fucked and you should be mad :sad:
That is 100% garbage having to put up with all that. You sound like you're dealing with a lot of the major things my wife and I are, only not split between two people and WA State Medicaid is much nicer.
She's had Poly-Cystic Ovarian Syndrome for a long long time and got fuckall response from people for a long time besides a shrug, brushed off over being a whiny baby since most people don't even feel it, or told the only recourse is removal which gets immediately shutdown by Christian Patriarchal policy calling it a cosmetic choice and "I know you have a kid already and don't want more but what if you change your miiiiiiind I mean really!"
It was exceedingly debilitating pain for her, very often and for long stretches of time. That being said, she's now pretty much entirely pain free after getting a new OBGYN who was willing to push for removal but wanted to try physical therapy first, since surgery can cause worse scar tissue and just make the pain worse indefinitely. Sometimes the pain experienced is from the cysts directly, but very often it's either the scar tissue left behind by them, or as in her case, it interfered with a ligament from the hip to groin. Both of which can be treated by physical therapy through a pelvic floor physical therapist. Unless you've already ruled that out as a possibility I highly recommend asking about it, for her all it took was a fairly simple strain-counterstrain release technique, for scar tissue it may not be so simple but should at least help. Even if it didn't work for her, it would have been nice to have someone think to mention it in the 15 years she's dealt with it, it's not a high cost to try out.
I just started Stelara earlier this month after getting no response from Xeljanz. In the months I had to try it out I discovered hooooooly hell my baseline psoriasis and arthritis are waaaay worse than when I started trying to find treatment. The best I ever felt was taking methotrexate, which being very cheap was the first time I had to try. Elevated liver enzyme tests ruled that out pretty fast, though. Seeing how much worse things are untreated now, I wonder if any of the ones that worked moderately would even do that any more. I'm running out of meaningful options after failing so many. It sure was great hearing my doctor talk about how most of the meds being designed for RA means they don't always work well for PA, and for lucky maybe %15 the ones intended primarily for PA also just don't work well. Not feelin' great about my future prospects.
In fact, things are hurting quite a bit after doing the dishes so I apologize if that's rambly and unclear.
Good timing, guys. Maybe next time spring for the express service.
this is why I'm extra stressed about having to switch off Stelara to another med - once you move away from one, there's no guarantee that going back on it will be as effective, so they really like to reduce the amount you're jumping between treatment methods and medicine types. but hey, it's critical that we follow the rules of the insurance company, not actual medical best practice!
I hope stelara works for you! it did very well for me. I'm fat, and it is one of the few biologics that has weight-dependent dosing. my only issue was between weeks 8 and 12 I started to have a little return of symptoms, nothing compared to no treatment at all, but apparently they can up the dosing to every 8 weeks if it is a substantial problem? it's one of the few things that I see as a positive about having to try the Enbrel - it is twice a week for me, so I'm hopeful that I won't have any of the lag period where it isn't as effective. who knows.
someday when I have the energy to shop around for another OBGYN, I will look into physical therapy! that's an interesting idea that I have literally never heard of. you'd think they'd want to encourage it, on account of after the bowel perforation I now have to visit the ER for any substantial lower abdominal pain, which means any time I have a gnarly cyst I'm headed to the ER. when we first moved to Texas, I scared the shit out of a radiology tech by casually saying it was my tenth CT in less than a year. apparently they worry about things like "radiation".
uhhh I do hate to be a paranoid asshole and possibly rule out treatments that could work for others, but I will mention (since they're moving you around on meds) that they put me on remicade for my psoriasis and PA and I have been told by multiple providers, across multiple specialties, that it was very likely the contributing factor in my bowel perforation and septic abdominal infection. which I had at 34. which is insanely young and probably why it went untreated for as long as it did and got as serious as it did - I kept getting brushed off every time I went to the ER, until the time that the ER doctor thought I was going to die. if you end up having no other options and they move you onto remicade, by all means try it, but pay serious attention to any lower abdominal pain and do not let people brush you off about it. if I'd been more assertive about it, I might still have those 30+ centimeters of bowel and not had a 17.5 centimeter hernia. end rant.
The lesson I have taken from it on a more personal level has been to just listen to people. It's something I have had occasion to make use of as a therapist if I can be indulged for a bit of bragging. I met with someone who was getting out patient hell for suicidal and homicidal thoughts but was very cagey about it. Long story short the last several doctors decided the best treatment for what was clearly postpartum depression was to hospitalize the woman. I couldn't confirm until later that yeah apparently postpartum depression last for years untreated.
Just listen to people! It's not hard! They do the work for you!
Doctor: This will almost certainly clear it up, but you might need to give it a while, like eight weeks or so.
Pharmacist: Do not use this stuff for more than a week, two weeks absolute maximum. PROMISE ME YOU WON'T GO OVER (okay they didn't say that bit but they were pretty emphatic).
This isn't the first time I've noticed this disparity between pharmacists' and doctors' recommended use for drugs. I usually just smile and nod and go with whichever time is longer.
fuck you, body, I needs my bubble tea.
What the hell, that sucks.
Oh, and that reminds me, I've apparently developed an allergy to something in wine, which gives me a right-behind-the-eyes headache if I drink even one glass. I'm not a big drinker anyway, but dammit, I fucking liked wine.
oh you can get hot boba everywhere, I just don't like it very much.
tbh while the iced-drink related itchy mouth/throat/hands/fingers sucks, I think the worst manifestation so far was breaking out in hives in the surf the other week. I may have to pull the full-body wetsuit out of storage.
@Butler my sister has an autoimmune response to wine and can now only drink gin. She's very upset and refuses to be consoled.
Yikes. Is she gluten intolerant too or are beers an option?
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Hmm.. While most distilled spirits won't have the same residual sugar in wines, nothing stops you from shaking in a little syrup and calling it a cocktail. Or maybe go with aged rum, the secret being most of those are dosed with sugar.
What they mean by 2 weeks maximum is likely don't use it more than two weeks continuously, if you do stop for a week then do it again if you need.
That's what I've always been told to do with the fairly strong topical steroid ointments I've been prescribed for my psoriasis.
Is cognac/brandy a no go too? Might be more to her taste than whisky.
LoL EU West nickname: Irridan
Beer is often from being allergic to barley, my father can't drink it for that reason (he uh....overexposed himself to it in college)
But it seems to be permanent for me
And it’s been ~4months since it started getting way worse post loud wedding where I forgot earplugs, which is what took it from annoying to scary / life impacting
I’m out of my acute depression and despair about it that I had at the start of this year but it still sucks, though I’m doing better
It sucks that now it’s always there and I notice it constantly, and I’ve been avoiding headphones and concerts and etc
Or anywhere that could be too loud really, though I carry my earplugs always - but it’s sometimes just scary to be out in the world
I miss having music in my life in the same way I used to because it was a super big part of my life
And I still just fear it getting worse and miss my life before, just one year ago, and know that my future is changed permanently primarily as a result of a dumb medication
But
I’m doing better
I guess acceptance takes time
I didn’t know that was a thing!
Y'all, tynic is perfectly capable of figuring out how to get someone hammered, especially a member of her own family.