I'm gonna necro this, I guess? Is it even still a necro anymore? I feel like every year or so I come back to this thread to complain about my chronic illness issues, probably because it was my first real introduction to chronic illness in general, back in the halcyon days when I thought it seemed a little dare I say overdramatic to insist that chronic illness was so different from regular illness, or that the weariness you feel from chronic physical illness is different from just regular mental illness, ha ha, joke's on me I guess
anyway I am struggling, yet again, with trying to not eat gluten. because the latest news is that I definitely don't have celiac despite being diagnosed with it before. it was hard enough to not eat gluten when I had an actual diagnosis that said, absolutely, you should not be doing this! so now trying to avoid it when I'm being told "well there's no reason we can find why your body is so angry about it, so you should probably just stop eating it I guess?" is absolutely miserable. and since nobody knows why, nobody can tell me how much is safe, either. should I be avoiding anything even remotely possible in terms of cross contamination? will a shared fryer make me sick? what about shared equipment? what about shared facilities? is the reason that my specifically GF cereal is upsetting my stomach because it has oats, which can be close enough to trigger gluten protein reactions, or is it because it's high in fiber? why the fuck am I averaging 3-6 diverticulitis flares a year for the last six years, ever since my bowel perf and resection? why are half the doctors I see completely unconcerned about that and the other half are freaking the fuck out that I haven't had additional surgery yet?
and that's not even getting into the fact that even taking Skyrizi every 8 weeks instead of 12, all my inflammation markers are high every time I get a blood test, but since my psoriasis is mostly clear, the reaction is a big old shrug. same as all my joints hurting all the time - x-rays and MRI showed minimal to no joint inflammation or damage that would be consistent with arthritis of either type, and it isn't more painful on one side but is consistently awful on both, but since I've got psoriasis, it must be psoriatic arthritis, case closed. my body has decided that it will no longer absorb iron from dietary sources so I've had two iron IV infusions recently, and from the follow up bloodwork it looks like a large IV infusion of iron will last me a whopping six months before I'm severely anemic again, but the solution to that is to shrug and say okay we'll just repeat it every six months. 'you may have some uncontrolled minor internal bleeding that we don't know about that's causing this issue,' the hematologist said, 'but I wouldn't worry about it too much as long as you can keep up on your infusions.' oh, okay. sorta like the ER doctor who told me that pooping blood in large quantities is totally fine because that's just a thing that happens to people with diverticula, contrary to the one two months later who admitted me against my very strident objections for the exact same thing.
nobody can agree on anything about my symptoms or how concerning they should be, which is really great for a person who has a ton of medical trauma, partially caused by being blown off repeatedly for my abdominal pain until it turned out that oh yeah I had a perforation with sepsis and I lost 33cm of necrotic bowel tissue and three weeks in the hospital, during which time I got to spend 8 hours fully intubated and awake because my surgeons didn't expect me to wake up so soon and the ICU nurses couldn't find anyone who would agree to pull my vent until my primary surgeon came in. 8 hours! fully intubated and fully awake! not sedated, not sleeping, and lol at google suggesting that patients who are awake and intubated "have a nurse by their bedside 24/7" - I certainly didn't. at any rate. fuck it, I don't know. I have a little discord I made with a bunch of chronically ill people and that has been helping some but sometimes you just want to primal scream somewhere else, you know? and I'm in therapy to help me process not just my regular ADHD/ASD and abuse and family trauma but also my totally awesome medical trauma, which is helping me, but I'm just so tired! I just want to wake up one day and a magical unicorn comes down from the sky and is like, BAM all of your physical problems, healed. all of your trauma, healed. you can just live life like a normal person now and not have to do things like center your entire life around where you can consistently find medical care regardless of your income. you can live wherever you want! you can just go places! for fun! and eat whatever you want!
I was doing well for a while there. Lately I have been having a lot more finger pain, and dexterity issues. It really sunk in what I was possibly dealing with when I was trying to put on my son's choker and flubbing it hard. Waiting until Friday to see the doctor, and I suspect it will be just a bunch of referrals from there. Still, smart money right now is on rheumatoid arthritis finally kicking in. I got screened for it like a dozen times when I was in my twenties while working my way to a fibromyalgia diagnosis. One doctor broke down the many, many signs I apparently have that I will develop it which I guess is helpful?
I still mostly suspect they will run some tests, tell me everything cam back normal, and just say it will probably go away on its own. My current PCP is absolutely not the type to do that, but I have heard it so much in my life it is a reflex reaction. Hopefully some answers, and more hopefully some treatments this week though.
I was doing well for a while there. Lately I have been having a lot more finger pain, and dexterity issues. It really sunk in what I was possibly dealing with when I was trying to put on my son's choker and flubbing it hard. Waiting until Friday to see the doctor, and I suspect it will be just a bunch of referrals from there. Still, smart money right now is on rheumatoid arthritis finally kicking in. I got screened for it like a dozen times when I was in my twenties while working my way to a fibromyalgia diagnosis. One doctor broke down the many, many signs I apparently have that I will develop it which I guess is helpful?
I still mostly suspect they will run some tests, tell me everything cam back normal, and just say it will probably go away on its own. My current PCP is absolutely not the type to do that, but I have heard it so much in my life it is a reflex reaction. Hopefully some answers, and more hopefully some treatments this week though.
Have you ever had an EMG? I had one recently to figure out why I'm having this ~mystery~ numbness, pain, and dexterity loss in my fingers that my PCP thought might be a pinched nerve and the people who administered the test were immediately like "oh wow do you have carpal tunnel," but I also apparently have really slow nerve conduction through my arms and hands now as well? regardless, I hope you get an actual answer and not just 'well that sucks'
I was doing well for a while there. Lately I have been having a lot more finger pain, and dexterity issues. It really sunk in what I was possibly dealing with when I was trying to put on my son's choker and flubbing it hard. Waiting until Friday to see the doctor, and I suspect it will be just a bunch of referrals from there. Still, smart money right now is on rheumatoid arthritis finally kicking in. I got screened for it like a dozen times when I was in my twenties while working my way to a fibromyalgia diagnosis. One doctor broke down the many, many signs I apparently have that I will develop it which I guess is helpful?
I still mostly suspect they will run some tests, tell me everything cam back normal, and just say it will probably go away on its own. My current PCP is absolutely not the type to do that, but I have heard it so much in my life it is a reflex reaction. Hopefully some answers, and more hopefully some treatments this week though.
Have you ever had an EMG? I had one recently to figure out why I'm having this ~mystery~ numbness, pain, and dexterity loss in my fingers that my PCP thought might be a pinched nerve and the people who administered the test were immediately like "oh wow do you have carpal tunnel," but I also apparently have really slow nerve conduction through my arms and hands now as well? regardless, I hope you get an actual answer and not just 'well that sucks'
I did a few years back now. Everything seemed perfectly normal except for my leg, apparently. A pinched nerve somewhere that the doctor was confused by. Considering the damage to my L3-5 though it was hardly a surprise. Fingers crossed for just carpal tunnel though. It would be a much nicer diagnosis considering.
cabsy, I suspect the 50/50 on docs being unconcerned or extremely concerned about the addition surgery is coming down to two things.
-How familiar they are with you condition. As I've found out and am still finding out with my ankylosing spondylitis there is a huge difference between. "I'm a specialist that can treat your condition because I meat the base criteria," and "I'm a specialist that has further specialized into being able to treat condition because each condition has it's own set of nuances."
-How risk averse they are. I'm not sure how it might impact their opinion on further surgery, but generally more risk averse doctors are squeamish about doing anything that they feel has minor benefits, while less risk averse ones are more willing to do something that might be on the borderline where the risks and benefits are roughly equal and it's something that might not be required.
As for me, I had fun with health related stuff for the past few months and by fun, I mean really frustrated.
First, I had to go into the ER earlier in July because of severe abdominal pain that was so bad that it made me nauseous to the point of vomiting. Went to an urgent care first and they sent me to the ER because while they were able to rule out it being an appendix issue, they had concerns I might have been having a gall stone attack. Well after having an ultrasound, they found that I wasn't have a gall stone attack, I just had a kidney stone that was 2.2cm in size in my right kidney.
Then I spend the better part of two weeks trying to get in to see a urologist. During that point I had to go in to the ER again because of the pain because Advil stopped working. Luckily, my mother thought to ask my brother that works as a paramedic if you knew an alternative to Advil, before I went to the ER again and got Toradol because I sure as fuck wasn't going to take Percocet, given how the timeline was going. I've got enough shit going on health wise, that I didn't want to risk adding pain killer addiction to the list because of how fucking long it was taking to get a urologist appointment. This ER ended up recommended the same urologist. After about another week of calling around everywhere and landing something in Richmond, which is over an hour away. Bugged my case manager with Medicaid about it, got one because I have a disability and suddenly the urologist that both ERs were recommended (well it's group at the hospital) called me up on the following Friday with an opening available on Monday of IIRC. Went and found that the guy was using the x-rays that my rheumatologist had ordered, which had been done the week before. This is where I learn that in addition the 2.2cm stone in my right kidney, I also had a 0.5cm in there as well.
Got a ultrasound lithotripsy done at the start of the the month, along with have an stent put in. It helped, but only a little of the stone fragments passed. Everyone figured it was a long shot at being a one and done thing; especially, since the other stone would have to be dealt with on another day. Urologist figured worth a try since least invasive is always better. Said surgery would have been one and done for the big stone, but the little stone was located far enough away that they'd only be able to get one. Went in early last week after getting more x-rays on that kidney and that was suppose to be the day they removed the stent, but the urologist I had that day was like "there is a ton of material still in your kidney and I don't want to take the stent out because I'm afraid you'll be in the ER later today. So I went in earlier today to get a laser lithotripsy and that urologist thinks he managed to get the little stone and the material left from the big stone. I'm hoping so. Also hoping it doesn't take two week to get the follow up, like it did after the ultrasound one.
Also since someone might ask, yes, there is a family history of kidney stones. Also wonder if the first rheumatologist I had done in the the Norfolk area didn't do her due diligence because the 2.2cm fucker was probably kicking around back then, likely much smaller, but would have shown up in the x-rays she ordered. Given that she didn't ask for an CD, the technician there would have told her in the report it was there.
The other round of bullshit I had to deal with is in regards to my Remicade infusions. Thought I gotten one lined up for early July, but the hospital down in Chesapeake managed to screw something up. Then figured, well I can maybe get it done at the new rheumatologist office, but I had to way for the insurer to authorize it.
Can I say that Congress needs to do something about that. Like I can see needing to reauthorize highly additive substances like opiates (which apparently you can easily get prescribe) because a common tactic of addicts and black market sellers is to burn through doctors to get multiple prescription orders. It makes no damn sense for something like Remicade, it is neither addictive or something that you could easily get to sell on the black market and probably no one that needs it, wants to get it off the black market. It has to be refrigerated, costs a fuck ton, you have to go to an infusion center and there are risks. Plus, those of us that need it have enough health issues, that we really want to make sure we're getting the right medication, not have to worry about it being adulterated in a way that creates more issues. I can't help but feel this is the insurers (not just Medicaid, trying to find a way to dick people over on expensive medications because boy, does it seem like the obnoxious obstacles only get deployed for pricy things like biologics and not really for the shit you want to keep controlled like opiates (first pain killer that seems to be an ER's go to for kidney stones despite Toradol being both better at managing the pain and not being addictive).
So that took longer than it needed and then I was further delayed in getting it until last week because the nurse found out that I had been in the process of getting it restarted after being off of it for a few years. So of course, it got further delayed because "you might have developed antibodies that will cause you to have a severe allergic reaction, despite the fact that I had gotten it in May, at the lowest dosage, with zero fucking issues." Interestingly enough there is no research that shows people are guaranteed to develop such antibodies, if they are are off of the Remicade for more than 3 months for any of the conditions it's used to treat. An interesting note, is that those with Crohn's disease are more likely to develop the antibodies (I figure a useful tidbit to keep in mind for anyone reading this that does have Crohn's disease. Both Ankylosing Spondylitis and Rheumatoid Arthritis, a condition closely related to Ankylosing Spondylitis, seem to have the least number of issues and the lowest dosage is rather effective for them. Also if people develop antibodies, rather than their asses needing an EpiPen, they usually just see the drug start working. Also the research on allergic reactions, seems to be more centered around concerns of people developing those because they gets switched between biosimilars. So seems like moving me off of Remicade to a biosimilar; especially, since I had restarted, is a bad idea.
Anyways, did manage to get the Remicade in last week and had no issues, what a surprise.
The only good news on the health front, is that my retina specialist is pretty sure that even though I've got some scaring in the left eye from the inflation. That the impact on vision should be very minor. I'll probably need laser eye surgery to clean some things up. The issue is that the inflammation needs to be solved, which is being delayed with all the fuckery going on that keeps fucking up my ability to get Remicade infusions. I'm hoping by October or November to get the health stuff stabilized and adequate vision in the left eye, that I can get back to working a job. The left eye is the big hold up here because the vision is crap and that does make driving on certain road particularly hazardous. Like when both eyes worked, there were roads that always worried me because of how this they were (be that the drivers and/or the road layout).
I'm pretty sure anyone in this thread already knows this, but just to put it out there one more time, here's a recommendation to anyone out there who's feeling a bit iffy about anything medical -- it may seem obvious, but go get it looked at.
Context: a while back I went in for a check under just such circumstances, and found out that I had colon cancer. They did surgery, took out the tumour, removed everything else nearby they didn't like the look of, and various scans didn't find anything suspicious further away, so that seems as resolved as it could be under the circumstances. (In the interests of thoroughness, though, they've started me on the first of 8 rounds of chemotherapy, which so far is, if not fun, at least tolerable.)
But, again -- had I just thought "oh, it's nothing, I'll wait and see if it goes away" back then before getting looked at, things could have become a lot more significant. And, yes, I know The Internet Always Says Your Symptoms Mean Cancer, but, sometimes, they _do_ mean that, and in that case it's worth finding out as soon as possible.
5 years ago, I lost my home and everything else after getting out of a bad marriage. I spent 3 years living in my car in LA. I've been off the streets and have an apartment/job etc. now, so we're good on that front, but while homeless I suffered from major circulatory issues in my legs. I ended up with major staph infections in my legs repeatedly, hospitalized more than once, almost lost my legs once. The results of all this is that now my legs swell daily even with proper cushioning, and the skin on my lower legs is essentially tissue paper. if I get an itch and absent-mindedly scratch it? fluid blister and then a wound that takes 2 weeks to heal, and that's with antibiotics and bandages. Take care of your legs. Elevate your feet. Especially anyone working in the Uber industry.
I also recently started having ocular migraines with kaleidoscope vision so that's a whole other barrel of fun.
I'm pretty sure anyone in this thread already knows this, but just to put it out there one more time, here's a recommendation to anyone out there who's feeling a bit iffy about anything medical -- it may seem obvious, but go get it looked at.
Context: a while back I went in for a check under just such circumstances, and found out that I had colon cancer. They did surgery, took out the tumour, removed everything else nearby they didn't like the look of, and various scans didn't find anything suspicious further away, so that seems as resolved as it could be under the circumstances. (In the interests of thoroughness, though, they've started me on the first of 8 rounds of chemotherapy, which so far is, if not fun, at least tolerable.)
But, again -- had I just thought "oh, it's nothing, I'll wait and see if it goes away" back then before getting looked at, things could have become a lot more significant. And, yes, I know The Internet Always Says Your Symptoms Mean Cancer, but, sometimes, they _do_ mean that, and in that case it's worth finding out as soon as possible.
Yeah this is why I was glad my gi doctor finally decided to to the scope early because she found two large polyps that were thankfully not cancerous but I found out it runs on my father's side.
I had been having uncomfortable BMs for like two years at that point with occasional dark red to purple blood in the stool and they didn't take it super serious until I found out about my biodad having had cancer in his 50s.
Take unusual bowel symptoms seriously. For real.
Also I wish you the best and hopefully a full recovery djmitchella
Psilocybin and ketamine are still off the table so we're going to aim powerful magnets at my brain. Witch sounds significantly longer and more expensive than either of those first two.
I got a new job and the high of a new job combined with the fact that I am already friends with my new co-workers really beat my depression back as far as it has been in almost a decade. Over the weekend though it still managed to work it's way back in. I was hoping that I could go off antidepressants completely but it seems that is not the case for now. Maybe never. On the plus side I think my new company would be much cooler with me getting ketamine treatments and the are legal in my state. Going to talk with my psychiatrist about just maintaining things for now instead of tapering off my medicine.
Hi chronic stuff thread. I was just hospitalized and diagnosed with some heart stuff. One of the major things in my healing/management of it is a low fluid diet (2 liters a day), low sodium diet, and daily weight tracking. They recommend a physical 2-liter soda bottle to keep track of fluid intake, but that sounds goofy and like a pain in the ass. Does anyone know of any Android apps that can be used to keep track of things like this?
I don't, but my initial reaction is rather than a 2 liter, get 4 half liter containers. Easier to carry, can change the fluid for your assorted cravings throughout the day, and it's not the pain in the ass of a big ol' 2 liter bottle.
Hi chronic stuff thread. I was just hospitalized and diagnosed with some heart stuff. One of the major things in my healing/management of it is a low fluid diet (2 liters a day), low sodium diet, and daily weight tracking. They recommend a physical 2-liter soda bottle to keep track of fluid intake, but that sounds goofy and like a pain in the ass. Does anyone know of any Android apps that can be used to keep track of things like this?
Are you going to be using a heart rate monitor as well? The Fitbit app has water tracking in it too.
I'm not planning on wearing a heart monitor. I do have a Fitbit I hadn't been using, but they aren't asking me to monitor all day (yet). Currently I need to document weight and make sure I follow those two diets. I think I am going to buy a blood pressure reader though, because I worry about it being stable.
I know it sucks but a bottle with markings is probably the best way, especially when you're just starting out. Trying to guess and do the math with other stuff is way harder.
I wouldn't use a 2-liter one though, I'd go with a single liter and just make sure you only fill it up twice.
Edit: I'm a dialysis patient btw so I know what fluid restrictions are like
knitdan on
“I was quick when I came in here, I’m twice as quick now”
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webguy20I spend too much time on the InternetRegistered Userregular
Hmmmm.
Going through my insurance it shows my hospital stay charge of 82k from back in may was denied due to lack of information, but I haven't been billed or anything, and the hospitals billing portal just had the remaining $500 I had owed from the initial 2k charge. I wonder if I should call the hospital billing department and follow up on that.
I recommend against it. Probably, the hospital billing is going back and forth getting that info, but I don't see how it could help you to be in that discussion.
Maybe give yourself a reminder every month or so to check on it?
I recommend against it. Probably, the hospital billing is going back and forth getting that info, but I don't see how it could help you to be in that discussion.
Maybe give yourself a reminder every month or so to check on it?
Good call. Nobody has had any trouble billing me for anything else. They'll get me this one eventually, which better not be the full price.
I'm currently in the 'full stop' part of my duloxetine taper; jesus h are the brain zaps so much worse going from 20 to 0 than they were for any other step. I feel so disconnected from the world and so floaty and weird. Hopefully now that I'm on day 3 I'm reaching the worst of it and it'll all be smooth(er) sailing from here on out but god damn does this suck today.
on the other hand, the other two times I've managed to stop this med were because 1: I lost my insurance and therefore had to just suck up sudden discontinuation and 2: that time I was hospitalized for 3 weeks because I turned out to have sepsis and a bowel perforation and they accidentally cold turkey-ed me off all of my meds, so, y'know, I guess this is really an improvement
three days later I'm here to say 'lol fuck this' and I took a dose of duloxetine this morning so maybe in a day or two I'll stop feeling like I want to die
pro tip: never let a doctor casually put you on an SNRI "because we don't prescribe stimulants for ADHD," lest you spend the next seven years of your life in various stages of trying to taper off of it
My Psychiatrist has advised me in the past I don't have to stop totally when getting off stuff, that I could take a dose every 2 or 3 days for example to help with any withdrawals.
My Psychiatrist has advised me in the past I don't have to stop totally when getting off stuff, that I could take a dose every 2 or 3 days for example to help with any withdrawals.
yeah it depends on the half life - that's one of the options for coming off of duloxetine, is to switch to something with a much longer half life and ride it out that way. duloxetine has a half life of 12 hours and is considered 99% out of system by 2.5 days, so the discontinuation hits extremely hard because there's no real taper as far as your body is concerned. I've had discontinuation symptoms start up in a very serious way just from missing one dose, it's why I didn't want to go back on it in the first place but when I went to stay at the grippy sock hotel that's what the psychiatrist there put me on after hearing I had been on it already, and grippy sock hotels are not known for wanting feedback on medication and dosing from the patients
gonna contact my psychiatrist (who, thank god, is much better than the one I had before!) and ask about maybe cross titering to something that I can then reduce, because the idea of counting out single balls after splitting open a capsule is just... not for me
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I have been feeling like shit all week. Persistant cough, headache, nausea. Feeling dehydrated but drinking a ton of fluids. Negative PCR test so it is not likely to be COVID. Went to a doc in the box, got an antibiotic and a cough suppressant but it hasn't done much so far.
I am miserable
Humor can be dissected as a frog can, but dies in the process.
Duloxetine is a medication that does double duty to address mood problems and neuropathic pain. Any druflg that addresses the latter will be hard to discontinue, since the brain and nerves adjust to the calming effects through neuroplasticity, so they will then have to unlearn the medication once it's taken away.
There are nonpharmacologic mechanisms to help graduate from withdrawal induced parasthesias depending on the symptom, most of which are known by physical or occupational therapists. If you're taking it for neuropathic pain and not just mood, there are other medications less likely to be discontinued by insurance, but they carry their own side effects.
Marty: The future, it's where you're going? Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
When I was put on it I was put on it solely because "that's all we will offer you to treat ADHD," and then the last seven years have been various attempts to switch off of it or discontinue it. I had some mild anxiety symptoms prior to going on it but nothing I had been on a long-term SSRI or SNRI for; my attempts to quit smoking all involved bupropion and they all made me have extreme negative reactions, though I did successfully quit smoking and did not actually kill or assault anyone, so a win there. I think meds are a great option for a lot of people, and my partner is on both duloxetine and bupropion! it's just EXTREMELY frustrating that something I have so many negative side effects from is something that shouldn't have been a first line treatment to begin with when I have well-documented ADHD, and especially because "well stimulants are bad" thanks Jan I've spent seven years hoping that someday I would have a sex drive again, or feel joy
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I hated duloxetine and like you was prescribed it before shit like Prozac (which actually works for me!) and was extremely frustrating getting off it. I feel you, Cabsy, and I hope you can get on the other side of this.
Humor can be dissected as a frog can, but dies in the process.
+1
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
edited September 2022
Does VA not help provide for bills while you are unable to work? Do you have any other supplemental insurance?
Edit: Val, lemme know what state you’re in. I have family that works for a nonprofit that helps ex-military get employed, someone there might know of an org in your state that can help with this.
Edit2: I don’t want to get your hopes unnecessarily up, just that I will pass this along and hope something comes out of it.
Munkus Beaver on
Humor can be dissected as a frog can, but dies in the process.
ADHD Online, just fyi, is a huge scam but my only option given everyone else either won’t take my insurance or diagnosis adults.
So have the followup meeting and they give me three months refill to see how the new dosage works. But the refill doesn’t just happen when I put in the request at my pharmacy. They want me to call in each month to refill, which is not how fucking refills work. And I wasn’t fucking told to call them during the meeting. So reach out to complain, and they tell me I need another meeting for another refill. Which is $99 to do jack shit because point of the meeting is to see how I’m doing after three months on the new dosage. Which I don’t fucking have.
Well things seem to be getting better now that I'm back on regular remicade treatments. I've now gotten two in without any interruptions and up to four back to back ones now. If the early BS hadn't put things off in a way that resulted in a gap of a few weeks between the 2nd and 3rd infusion, I'd probably be in even better shape. Seems to be helping the left eye as well. It sounds like I'll have to get some form of laser surgery done on that eye to fix some of the vision loss, but most of it is from it being inflamed, but it still looks like there hasn't been any real permanent vision loss from it being inflamed for so long.
Also looks like I'm clear of my kidney stone. Had the last of removed with lasers and will find out next month if any of it is still in my kidney or if it all got evacuated once it bot cut down to a ton of small pieces. I guess the upside to this is that I've finally managed to stop drinking soda, which will be good for keeping the grocery budget low. Sure juice costs money, but not nearly as much as soda. Can get pretty good quality brands for a little more than it would cost me to get store brand soda. Also got to learn just how bad my preferred sodas are for me, mainly colas. It's not just the sugar and caffeine, but the whole package as well.
Now I just got to work physical therapy in and try getting back into the workforce at this point, while hoping that medical science finds new ways to solve some of the issues that I have work around. Mainly a safe way to reverse some of the joint fusing that I have. Also as an added bonus, my infusion center was doing flu shots, so that's out of the way. Just got to squeeze the covid booster in during the two week window I have for getting shots like that done and hope I can squeeze shingles vaccine in, assuming the docs can get the paperwork in for that.
After about five weeks of magnets I was shown one of my brain scans and the graphs indicate what the doctor tells me is increased activity in parts of my brain.
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anyway I am struggling, yet again, with trying to not eat gluten. because the latest news is that I definitely don't have celiac despite being diagnosed with it before. it was hard enough to not eat gluten when I had an actual diagnosis that said, absolutely, you should not be doing this! so now trying to avoid it when I'm being told "well there's no reason we can find why your body is so angry about it, so you should probably just stop eating it I guess?" is absolutely miserable. and since nobody knows why, nobody can tell me how much is safe, either. should I be avoiding anything even remotely possible in terms of cross contamination? will a shared fryer make me sick? what about shared equipment? what about shared facilities? is the reason that my specifically GF cereal is upsetting my stomach because it has oats, which can be close enough to trigger gluten protein reactions, or is it because it's high in fiber? why the fuck am I averaging 3-6 diverticulitis flares a year for the last six years, ever since my bowel perf and resection? why are half the doctors I see completely unconcerned about that and the other half are freaking the fuck out that I haven't had additional surgery yet?
and that's not even getting into the fact that even taking Skyrizi every 8 weeks instead of 12, all my inflammation markers are high every time I get a blood test, but since my psoriasis is mostly clear, the reaction is a big old shrug. same as all my joints hurting all the time - x-rays and MRI showed minimal to no joint inflammation or damage that would be consistent with arthritis of either type, and it isn't more painful on one side but is consistently awful on both, but since I've got psoriasis, it must be psoriatic arthritis, case closed. my body has decided that it will no longer absorb iron from dietary sources so I've had two iron IV infusions recently, and from the follow up bloodwork it looks like a large IV infusion of iron will last me a whopping six months before I'm severely anemic again, but the solution to that is to shrug and say okay we'll just repeat it every six months. 'you may have some uncontrolled minor internal bleeding that we don't know about that's causing this issue,' the hematologist said, 'but I wouldn't worry about it too much as long as you can keep up on your infusions.' oh, okay. sorta like the ER doctor who told me that pooping blood in large quantities is totally fine because that's just a thing that happens to people with diverticula, contrary to the one two months later who admitted me against my very strident objections for the exact same thing.
nobody can agree on anything about my symptoms or how concerning they should be, which is really great for a person who has a ton of medical trauma, partially caused by being blown off repeatedly for my abdominal pain until it turned out that oh yeah I had a perforation with sepsis and I lost 33cm of necrotic bowel tissue and three weeks in the hospital, during which time I got to spend 8 hours fully intubated and awake because my surgeons didn't expect me to wake up so soon and the ICU nurses couldn't find anyone who would agree to pull my vent until my primary surgeon came in. 8 hours! fully intubated and fully awake! not sedated, not sleeping, and lol at google suggesting that patients who are awake and intubated "have a nurse by their bedside 24/7" - I certainly didn't. at any rate. fuck it, I don't know. I have a little discord I made with a bunch of chronically ill people and that has been helping some but sometimes you just want to primal scream somewhere else, you know? and I'm in therapy to help me process not just my regular ADHD/ASD and abuse and family trauma but also my totally awesome medical trauma, which is helping me, but I'm just so tired! I just want to wake up one day and a magical unicorn comes down from the sky and is like, BAM all of your physical problems, healed. all of your trauma, healed. you can just live life like a normal person now and not have to do things like center your entire life around where you can consistently find medical care regardless of your income. you can live wherever you want! you can just go places! for fun! and eat whatever you want!
anyway, how y'all doing
I still mostly suspect they will run some tests, tell me everything cam back normal, and just say it will probably go away on its own. My current PCP is absolutely not the type to do that, but I have heard it so much in my life it is a reflex reaction. Hopefully some answers, and more hopefully some treatments this week though.
Have you ever had an EMG? I had one recently to figure out why I'm having this ~mystery~ numbness, pain, and dexterity loss in my fingers that my PCP thought might be a pinched nerve and the people who administered the test were immediately like "oh wow do you have carpal tunnel," but I also apparently have really slow nerve conduction through my arms and hands now as well? regardless, I hope you get an actual answer and not just 'well that sucks'
I did a few years back now. Everything seemed perfectly normal except for my leg, apparently. A pinched nerve somewhere that the doctor was confused by. Considering the damage to my L3-5 though it was hardly a surprise. Fingers crossed for just carpal tunnel though. It would be a much nicer diagnosis considering.
-How familiar they are with you condition. As I've found out and am still finding out with my ankylosing spondylitis there is a huge difference between. "I'm a specialist that can treat your condition because I meat the base criteria," and "I'm a specialist that has further specialized into being able to treat condition because each condition has it's own set of nuances."
-How risk averse they are. I'm not sure how it might impact their opinion on further surgery, but generally more risk averse doctors are squeamish about doing anything that they feel has minor benefits, while less risk averse ones are more willing to do something that might be on the borderline where the risks and benefits are roughly equal and it's something that might not be required.
As for me, I had fun with health related stuff for the past few months and by fun, I mean really frustrated.
First, I had to go into the ER earlier in July because of severe abdominal pain that was so bad that it made me nauseous to the point of vomiting. Went to an urgent care first and they sent me to the ER because while they were able to rule out it being an appendix issue, they had concerns I might have been having a gall stone attack. Well after having an ultrasound, they found that I wasn't have a gall stone attack, I just had a kidney stone that was 2.2cm in size in my right kidney.
Then I spend the better part of two weeks trying to get in to see a urologist. During that point I had to go in to the ER again because of the pain because Advil stopped working. Luckily, my mother thought to ask my brother that works as a paramedic if you knew an alternative to Advil, before I went to the ER again and got Toradol because I sure as fuck wasn't going to take Percocet, given how the timeline was going. I've got enough shit going on health wise, that I didn't want to risk adding pain killer addiction to the list because of how fucking long it was taking to get a urologist appointment. This ER ended up recommended the same urologist. After about another week of calling around everywhere and landing something in Richmond, which is over an hour away. Bugged my case manager with Medicaid about it, got one because I have a disability and suddenly the urologist that both ERs were recommended (well it's group at the hospital) called me up on the following Friday with an opening available on Monday of IIRC. Went and found that the guy was using the x-rays that my rheumatologist had ordered, which had been done the week before. This is where I learn that in addition the 2.2cm stone in my right kidney, I also had a 0.5cm in there as well.
Got a ultrasound lithotripsy done at the start of the the month, along with have an stent put in. It helped, but only a little of the stone fragments passed. Everyone figured it was a long shot at being a one and done thing; especially, since the other stone would have to be dealt with on another day. Urologist figured worth a try since least invasive is always better. Said surgery would have been one and done for the big stone, but the little stone was located far enough away that they'd only be able to get one. Went in early last week after getting more x-rays on that kidney and that was suppose to be the day they removed the stent, but the urologist I had that day was like "there is a ton of material still in your kidney and I don't want to take the stent out because I'm afraid you'll be in the ER later today. So I went in earlier today to get a laser lithotripsy and that urologist thinks he managed to get the little stone and the material left from the big stone. I'm hoping so. Also hoping it doesn't take two week to get the follow up, like it did after the ultrasound one.
Also since someone might ask, yes, there is a family history of kidney stones. Also wonder if the first rheumatologist I had done in the the Norfolk area didn't do her due diligence because the 2.2cm fucker was probably kicking around back then, likely much smaller, but would have shown up in the x-rays she ordered. Given that she didn't ask for an CD, the technician there would have told her in the report it was there.
The other round of bullshit I had to deal with is in regards to my Remicade infusions. Thought I gotten one lined up for early July, but the hospital down in Chesapeake managed to screw something up. Then figured, well I can maybe get it done at the new rheumatologist office, but I had to way for the insurer to authorize it.
Can I say that Congress needs to do something about that. Like I can see needing to reauthorize highly additive substances like opiates (which apparently you can easily get prescribe) because a common tactic of addicts and black market sellers is to burn through doctors to get multiple prescription orders. It makes no damn sense for something like Remicade, it is neither addictive or something that you could easily get to sell on the black market and probably no one that needs it, wants to get it off the black market. It has to be refrigerated, costs a fuck ton, you have to go to an infusion center and there are risks. Plus, those of us that need it have enough health issues, that we really want to make sure we're getting the right medication, not have to worry about it being adulterated in a way that creates more issues. I can't help but feel this is the insurers (not just Medicaid, trying to find a way to dick people over on expensive medications because boy, does it seem like the obnoxious obstacles only get deployed for pricy things like biologics and not really for the shit you want to keep controlled like opiates (first pain killer that seems to be an ER's go to for kidney stones despite Toradol being both better at managing the pain and not being addictive).
So that took longer than it needed and then I was further delayed in getting it until last week because the nurse found out that I had been in the process of getting it restarted after being off of it for a few years. So of course, it got further delayed because "you might have developed antibodies that will cause you to have a severe allergic reaction, despite the fact that I had gotten it in May, at the lowest dosage, with zero fucking issues." Interestingly enough there is no research that shows people are guaranteed to develop such antibodies, if they are are off of the Remicade for more than 3 months for any of the conditions it's used to treat. An interesting note, is that those with Crohn's disease are more likely to develop the antibodies (I figure a useful tidbit to keep in mind for anyone reading this that does have Crohn's disease. Both Ankylosing Spondylitis and Rheumatoid Arthritis, a condition closely related to Ankylosing Spondylitis, seem to have the least number of issues and the lowest dosage is rather effective for them. Also if people develop antibodies, rather than their asses needing an EpiPen, they usually just see the drug start working. Also the research on allergic reactions, seems to be more centered around concerns of people developing those because they gets switched between biosimilars. So seems like moving me off of Remicade to a biosimilar; especially, since I had restarted, is a bad idea.
Anyways, did manage to get the Remicade in last week and had no issues, what a surprise.
The only good news on the health front, is that my retina specialist is pretty sure that even though I've got some scaring in the left eye from the inflation. That the impact on vision should be very minor. I'll probably need laser eye surgery to clean some things up. The issue is that the inflammation needs to be solved, which is being delayed with all the fuckery going on that keeps fucking up my ability to get Remicade infusions. I'm hoping by October or November to get the health stuff stabilized and adequate vision in the left eye, that I can get back to working a job. The left eye is the big hold up here because the vision is crap and that does make driving on certain road particularly hazardous. Like when both eyes worked, there were roads that always worried me because of how this they were (be that the drivers and/or the road layout).
Context: a while back I went in for a check under just such circumstances, and found out that I had colon cancer. They did surgery, took out the tumour, removed everything else nearby they didn't like the look of, and various scans didn't find anything suspicious further away, so that seems as resolved as it could be under the circumstances. (In the interests of thoroughness, though, they've started me on the first of 8 rounds of chemotherapy, which so far is, if not fun, at least tolerable.)
But, again -- had I just thought "oh, it's nothing, I'll wait and see if it goes away" back then before getting looked at, things could have become a lot more significant. And, yes, I know The Internet Always Says Your Symptoms Mean Cancer, but, sometimes, they _do_ mean that, and in that case it's worth finding out as soon as possible.
I also recently started having ocular migraines with kaleidoscope vision so that's a whole other barrel of fun.
Yeah this is why I was glad my gi doctor finally decided to to the scope early because she found two large polyps that were thankfully not cancerous but I found out it runs on my father's side.
I had been having uncomfortable BMs for like two years at that point with occasional dark red to purple blood in the stool and they didn't take it super serious until I found out about my biodad having had cancer in his 50s.
Take unusual bowel symptoms seriously. For real.
Also I wish you the best and hopefully a full recovery djmitchella
We really need to deschedule a lot of drugs.
PSN:Furlion
Are you going to be using a heart rate monitor as well? The Fitbit app has water tracking in it too.
I wouldn't use a 2-liter one though, I'd go with a single liter and just make sure you only fill it up twice.
Edit: I'm a dialysis patient btw so I know what fluid restrictions are like
-Indiana Solo, runner of blades
Going through my insurance it shows my hospital stay charge of 82k from back in may was denied due to lack of information, but I haven't been billed or anything, and the hospitals billing portal just had the remaining $500 I had owed from the initial 2k charge. I wonder if I should call the hospital billing department and follow up on that.
Origin ID: Discgolfer27
Untappd ID: Discgolfer1981
Maybe give yourself a reminder every month or so to check on it?
Good call. Nobody has had any trouble billing me for anything else. They'll get me this one eventually, which better not be the full price.
Origin ID: Discgolfer27
Untappd ID: Discgolfer1981
on the other hand, the other two times I've managed to stop this med were because 1: I lost my insurance and therefore had to just suck up sudden discontinuation and 2: that time I was hospitalized for 3 weeks because I turned out to have sepsis and a bowel perforation and they accidentally cold turkey-ed me off all of my meds, so, y'know, I guess this is really an improvement
pro tip: never let a doctor casually put you on an SNRI "because we don't prescribe stimulants for ADHD," lest you spend the next seven years of your life in various stages of trying to taper off of it
yeah it depends on the half life - that's one of the options for coming off of duloxetine, is to switch to something with a much longer half life and ride it out that way. duloxetine has a half life of 12 hours and is considered 99% out of system by 2.5 days, so the discontinuation hits extremely hard because there's no real taper as far as your body is concerned. I've had discontinuation symptoms start up in a very serious way just from missing one dose, it's why I didn't want to go back on it in the first place but when I went to stay at the grippy sock hotel that's what the psychiatrist there put me on after hearing I had been on it already, and grippy sock hotels are not known for wanting feedback on medication and dosing from the patients
gonna contact my psychiatrist (who, thank god, is much better than the one I had before!) and ask about maybe cross titering to something that I can then reduce, because the idea of counting out single balls after splitting open a capsule is just... not for me
I am miserable
There are nonpharmacologic mechanisms to help graduate from withdrawal induced parasthesias depending on the symptom, most of which are known by physical or occupational therapists. If you're taking it for neuropathic pain and not just mood, there are other medications less likely to be discontinued by insurance, but they carry their own side effects.
Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
Edit: Val, lemme know what state you’re in. I have family that works for a nonprofit that helps ex-military get employed, someone there might know of an org in your state that can help with this.
Edit2: I don’t want to get your hopes unnecessarily up, just that I will pass this along and hope something comes out of it.
So have the followup meeting and they give me three months refill to see how the new dosage works. But the refill doesn’t just happen when I put in the request at my pharmacy. They want me to call in each month to refill, which is not how fucking refills work. And I wasn’t fucking told to call them during the meeting. So reach out to complain, and they tell me I need another meeting for another refill. Which is $99 to do jack shit because point of the meeting is to see how I’m doing after three months on the new dosage. Which I don’t fucking have.
So transparently trying to drain every last cent,
This is so much more boring than I make it out to be.
Also looks like I'm clear of my kidney stone. Had the last of removed with lasers and will find out next month if any of it is still in my kidney or if it all got evacuated once it bot cut down to a ton of small pieces. I guess the upside to this is that I've finally managed to stop drinking soda, which will be good for keeping the grocery budget low. Sure juice costs money, but not nearly as much as soda. Can get pretty good quality brands for a little more than it would cost me to get store brand soda. Also got to learn just how bad my preferred sodas are for me, mainly colas. It's not just the sugar and caffeine, but the whole package as well.
Now I just got to work physical therapy in and try getting back into the workforce at this point, while hoping that medical science finds new ways to solve some of the issues that I have work around. Mainly a safe way to reverse some of the joint fusing that I have. Also as an added bonus, my infusion center was doing flu shots, so that's out of the way. Just got to squeeze the covid booster in during the two week window I have for getting shots like that done and hope I can squeeze shingles vaccine in, assuming the docs can get the paperwork in for that.
I still remain skeptical.