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General Discussion => Essentially Flyertalk => Topic started by: DaBigTrain on July 01, 2021, 12:24:17 AM
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Hey guys,
So I'm starting this thread because the core group of us are getting older, which sucks major ass.
I made mention a few weeks ago about a chronic disease I was diagnosed with. It's not contagious, it's not life threatening, but it is chronic, very painful, and takes a major toll on your overall health. So... I have Hidradenitis Suppurativa, a chronic skin disease that is extremely painful and has no cure, and extremely limited treatments options.
There is a better treatment that just came out a few years ago, Humira, that has been good, but it's super expensive. Hoping I don't get to that level.
I know this is a new kind of openness thread but I am tired of hiding this kind of thing.
More info: https://www.hsconnect.org/
So, my insurance doesn’t cover name brand drugs. My daughters neurologist prescribed her a medication that doesn’t have a generic yet. He gave me a coupon for 50% off. Take it in to be filled and the pharmacy says that will it be $537. Oh, but I have a coupon and they tell me that’s the price after the coupon.
So, the drug company has some program you can enroll in for discounted pricing. So, I ended up getting it for $340. So, $340 a month every month, forever.
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I was recently diagnosed with a pretty rare disease. I’m fine but it’s a chronic condition that could get worse over time, and there is no cure. I started the first kind of treatment for it, but if this doesn’t work there is a much better treatment, and really the only treatment. It’s $20k a year…..:blank:
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sorry to hear that you are suffering from it. sounds like a huge pain to go through. i don't know the economics behind it but pretty bullshit drugs cost that much. wishing you the best.
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sorry to hear, tbt
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that sucks tbt. hope you can find a way to treat it so it doesn't negatively impact your life too much.
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That's awful. I would probably look into immigration if I were faced with that.
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Sorry to hear, bud. What's it feel like?
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https://www.humira.com/humira-complete/cost-and-copay
From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked. One of these programs saved me thousands a few years back. I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad. Even when the insurance company finally approved it, it only knocked 30% off.
It's worth a shot.
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Sorry DBT
Any word on how much time is left before generics are available?
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Here is to you being able to keep it under control mainly thru dieting and exercise DBT. It sounds a lot like (but worse) than psoriasis, which is also treated by Humira and a host of other drugs.
Aside from the cost, many of the drugs used to treat these things have scary (imo) potential side effects.
I’ve had psoriasis for about 12 years, and have been lucky enough to keep it relatively mild, and relegated to mostly my knees and elbows w/out drugs. Adding the pain and lumps of HS is a whole other level that I hope you don’t or soon won’t have to deal with.
Here is to you keeping or getting this thing confined to being a mild annoyance thru the right mix of meds and healthy living.
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Thanks guys. I have been dealing with this for several months but finally went to the dr because I couldn't take it anymore. It has helped just telling people so they know what I'm actually going through. Don't feel like I'm hiding something in plain sight. Also has helped me mentally come to the realization that I'll probably deal with this for the rest of my life.
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Sorry to hear, bud. What's it feel like?
Like having an open wound and moving around with it. Best description is a very strong burning pain.
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https://www.humira.com/humira-complete/cost-and-copay
From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked. One of these programs saved me thousands a few years back. I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad. Even when the insurance company finally approved it, it only knocked 30% off.
It's worth a shot.
Sorry DBT
Any word on how much time is left before generics are available?
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Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.
As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.
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Sorry to hear, bud. What's it feel like?
Like having an open wound and moving around with it. Best description is a very strong burning pain.
Damn. :frown:
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imo unless it gets really bad, don't take the pills that could lead to an infection on the skin of the perineum
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https://www.humira.com/humira-complete/cost-and-copay
From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked. One of these programs saved me thousands a few years back. I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad. Even when the insurance company finally approved it, it only knocked 30% off.
It's worth a shot.
Sorry DBT
Any word on how much time is left before generics are available?
Sent from my iPhone using Tapatalk
Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.
As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.
Do you have a phobia of needles? Unless you do, I think you'll find that giving yourself the bi-weekly injection is nbd.
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https://www.humira.com/humira-complete/cost-and-copay
From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked. One of these programs saved me thousands a few years back. I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad. Even when the insurance company finally approved it, it only knocked 30% off.
It's worth a shot.
Sorry DBT
Any word on how much time is left before generics are available?
Sent from my iPhone using Tapatalk
Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.
As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.
Do you have a phobia of needles? Unless you do, I think you'll find that giving yourself the bi-weekly injection is nbd.
No I don't. I used to give plasma twice a week for years in college. I have to watch any shot I get too.
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use an insulin needle and it'd be no sweat.
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Sorry to hear bud, hoping you find some comfort and relief.
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Maybe gE can chip in for one of those pain med masks bane wears in the dark knight rises? I think tbt could pull off that look.
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Sorry to hear, bud. What's it feel like?
Like having an open wound and moving around with it. Best description is a very strong burning pain.
crap.
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Yikes, sorry TBT. Here’s hoping for better and cheaper treatments on the horizon.
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Guys, it hasn’t been good recently. Have a dr appointment a week from today and hoping can move forward with something else.
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What will you be trying next? How many more steps to humira? Hope bitcoin is easing the pain.
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What will you be trying next? How many more steps to humira? Hope bitcoin is easing the pain.
There is some steroid treatment that I had at my last DR appointment that helped, but they can only do it about once a month. It is literally injecting the whole area, mm by mm with a steroid, it's very painful but it did help a lot last time. So maybe do that again but I'm not sure next steps, hoping to find out at this appointment.
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Damn. Is there any part of this that doesn't sound completely awful.
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Very sorry to hear about this. I will continue to vote for free medical for all, just like the rest of the Western World.
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Is THC an option for discomfort?
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Is THC an option for discomfort?
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I’m not sure. I know people use it for other types of pain but would have to do more research. I’ve found some high percentage lidocaine creams that have helped a lot but they are just masking the pain. Anti-inflammatory meds like Aleve help but I don’t want to pop those every day.
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Mercy. I know the pain of steroid injections. Had a set of them once for alopecia. Once. I lived with the bald spot a few months until the hair finally returned. Eff. That crap brought tears to my eyes.
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Hey guys I've obviously been around but just wanted to give an update after 2 months. I have been doing a lot better. After my last update I was doing research that led to a Ted Talk and it referenced a book. That book is below but it was written by Tara Grant, she has been a long time sufferer of HS and dealt with it for a long time. Through her own experiences, research and trial and error she has made great strides in the area and has been in remission for years. Her secret, fighting the root cause(best that we know) of HS which is what is called a leaky gut. It's probably responsible for a lot of autoimmune diseases.
Through dietary changes alone she has been able to heal herself. The book does a good job of going through what HS is and how a leaky gut can cause it. It also has so many horror stories of other people that have this awful disease. I have made some dietary changes and still working through it but have seen some improvement. The more and more I research Humira, it is a great drug, but it just makes your immune system suck and not attack itself as much. That also is a terrible scenario during a time like this.
The thing that struck me the most about this book and approach is she isn't selling anything, isn't saying to take any "miracle" medicines or anything like that. Just simply taking control of your diet and healing yourself. Now the diet and approach is pretty extreme but if you want to solve the root cause that's what it is going to take. So anyway that's the update, thankful that I am doing better because let me tell you, this disease rough ridin' sucks.
https://www.amazon.com/dp/173267454X
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DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.
I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes. The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet. Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.
What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.
My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.
Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.
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Hey guys.
Long time no update but it’s bad, real bad now. Probably a lot of factors including a lot of stress. The past month and a half I have barely left my apartment. Can barely walk, can’t sit anywhere comfortably and if it wasn’t for grocery home delivery I might have had to have someone stay with me to help.
The good news is, I start Humira tomorrow. I was supposed to start 2 weeks ago but because I got covid like 3 days before I was supposed to start I had to wait. The whole “making your immune system suck” delayed me starting until I was all clear of any infections.
So, I’m really hoping this is the start of getting better. It’s really starting to wear me down. Chronic pain is the rough ridin' worst.
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Oh yeah, also, I thought Humira was gonna be $20k a year…. :lol:
Thankfully insurance is covering everything but ~$66k a year. This is the cost for a 1 month supply.
(https://uploads.tapatalk-cdn.com/20220614/ef6ff3a1d2ad3d2f14985beb1910acc1.jpg)
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Ridiculous, T's&p's tbt
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fwiw you might want to look into AbbVie Assist if you haven't done so already.
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fwiw you might want to look into AbbVie Assist if you haven't done so already.
Is Humira considered a specialty drug? You'll probably hit your out-of-pocket max soon, and the cost will come down. I second BAC's suggestion, too. For expensive drugs, a lot of pharma companies will help you hit your out-of-pocket max so that they can just collect from health insurance.
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fwiw you might want to look into AbbVie Assist if you haven't done so already.
Is Humira considered a specialty drug? You'll probably hit your out-of-pocket max soon, and the cost will come down. I second BAC's suggestion, too. For expensive drugs, a lot of pharma companies will help you hit your out-of-pocket max so that they can just collect from health insurance.
Yes Humira is a specialty drug. I even got it from the specialty pharmacy. Also, I posted that cost and my obligation for that is $0. So I already won’t pay anything.
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oh man, that's a relief. I thought you'd have to pay that yourself. hoping you get better quick tbt. sounds like an awful thing you are dealing with.
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T's & P's
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DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.
I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes. The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet. Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.
What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.
My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.
Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.
i heard that carnivore diet really reduces inflammation just because it cuts out plants, which all are inflammatory. could be another bullshit diet fad. googling carnivore diet and HS has few but positive results though.
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I think Jordan Peterson did that diet and just based on the fact that Jordan Peterson has mumped up his life more than almost anyone on the planet I cannot recommend it.
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DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.
I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes. The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet. Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.
What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.
My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.
Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.
i heard that carnivore diet really reduces inflammation just because it cuts out plants, which all are inflammatory. could be another bullshit diet fad. googling carnivore diet and HS has few but positive results though.
grats on the first step waks.
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i'm just trying to be a bro and give dbt an excuse to eat fatty steaks for bl&d
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damn tbt, i’m sorry to read about this. really hoping humira is the answer to this.
crap like this can have a terrible effect on your state of mind, be sure to get help up top as needed, you need to be clicking on all cylinders to fight this. hang in there.
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Thanks guys.
Had my first dose this morning. Had a shot in each leg, wasn't that bad. Hoping for positive results.
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Thanks guys.
Had my first dose this morning. Had a shot in each leg, wasn't that bad. Hoping for positive results.
good luck friend
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Good luck bud. Hoping for the best
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Sorry to hear that this crap is back tbt. I hope you are able to get some relief from the Humira.
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Hey guys!
About 2 weeks ago, like 2-3 days after my first dose I started to feel marginally better. Each day has been a little bit better since then. I just had my second round yesterday and gave myself the shot and it was super easy actually. They told me that I probably wouldn't see anything in the first 2 weeks and it's usually between 1-3 months before you really start to see results. It's already working and just the difference from where it was to now is substantial. I can walk almost normal now and the pain has gone down dramatically.
Hoping to continue getting better as time goes on but early results are this is just a miracle drug. My outlook is so much better already and I've really had no side effects of any kind so far. I have a long way to go but really encouraged this is going to give me a second chance at life I didn't think I would have to be able to live a more normal life.
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That's super promising news
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That's awesome dude, Ts & Ps for continued improvement!
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hell yea! :driving: :driving:
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Awesome news!
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Great news DBT, kick whipping it’s ass
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Hey guys!
About 2 weeks ago, like 2-3 days after my first dose I started to feel marginally better. Each day has been a little bit better since then. I just had my second round yesterday and gave myself the shot and it was super easy actually. They told me that I probably wouldn't see anything in the first 2 weeks and it's usually between 1-3 months before you really start to see results. It's already working and just the difference from where it was to now is substantial. I can walk almost normal now and the pain has gone down dramatically.
Hoping to continue getting better as time goes on but early results are this is just a miracle drug. My outlook is so much better already and I've really had no side effects of any kind so far. I have a long way to go but really encouraged this is going to give me a second chance at life I didn't think I would have to be able to live a more normal life.
hell yeah buddy!
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Hey guys.
So it's been a while since I last gave an update here. My last big update was after a few weeks on Humira and I was doing a lot better. Well, that lasted until about the end of July. At which point my symptoms came back with a vengeance sadly. The start of August I was back to barely being able to leave my apartment and I had to do grocery delivery again. At the end of August my dad came down for a few days and went with me to my follow up appointment with my Dr. They said that sometimes it takes a while for the medicine to really start working again and we should wait a little longer.
I was still working but not as much and my boss kind of let me slack a bit because he knew what I was dealing with. Eventually tho he convinced me that I should go on FMLA/STD since that is what it is for. So since about the second week of Sept I have been off work and my mom came down at the same time and has stayed with me the past 2 months. I wouldn't have been able to take care of myself without her help. I have been back to being almost unable to walk or sit normally, sleeping can be rough getting comfortable too. I had been talking to my Dr and since it had been almost 4-5 months and seeing no results, we decided it was time to move on to something else. Humira is the ONLY approved medication to treat my condition, but there is another treatment that has seen positive results and is in the same class of drug as Humira. Through a lot of hoops and stuff I was finally approved for this new medication a few weeks ago. The medication isn't a new drug but treats a lot of the same things as Humira.
Tomorrow, finally, I start my new medication called Remicade. When I was using Humira it was just a shot I gave myself every 2 weeks, with Remicade it is done by infusion. So tomorrow I go to the infusion center and will get my first dose via infusion (IV). My mom left on Saturday morning, but my dad flew in Saturday afternoon and is taking me to get treatment. Then we are headed back to KS for a few weeks until I have to come back to Texas for my next infusion. I am so hopeful that this works better than Humira and keeps working. Dealing with chronic pain just takes it out of you and getting a glimpse of what a new life could be, and then having it taken back again has been very rough.
There are other drugs in the pipeline, but Remicade is the last line until then, so this needs to work. Anyways just thought I would give you guys an update. This is a terrible, terrible disease and I just want to get better and back to a semi normal life.
Go Cats
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You can handle this, and obviously have been doing so admirably.
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That sucks, but hopefully you can keep getting the help and relief you need.
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Hoping for the best with the new drug
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Best of luck to you, DBT.
Crazy that I never saw this thread before. Update on my daughter from the opening post ITT. She had a pretty major setback last March. She had 3 seizures on a flight from NYC to DFW. Dr had to increase her dosage and so far, so good. Price of her meds has not gone down but we have an HSA account to help with those costs.
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Damn, hang there!
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You are stronger than I could ever hope to be.
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https://twitter.com/captainjag31/status/1625377994813349889
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:thumbsup: :thumbsup: :thumbsup:
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I'm glad you found something that works for you. Are you still getting it via infusion?
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So happy for you, bud!
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Thanks guys!
Yeah I’ll get it via infusion every 6 weeks now. Its a forever drug or switch to something else if it quits working or a new better treatment comes out.
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This week June 5-11 is HS awareness week. Oddly enough I got my official diagnosis 2 years ago during HS awareness week.
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So this time last year I basically couldn’t leave my apartment. It would be another 4 weeks that I officially went on short term disability at work.
I’ve been struggling a lot lately with what I assume is PTSD from everything. I recently upped my dosage of Remicade. Can still increase the frequency if needed.
I have a lot of days where I feel weird being able to walk, sit, drive, even going outside. What I went through is still very real and present. It’s been very hard working through. Add in other things and it’s just been rough.
I have and am doing better since I started my Remicade in November but the lasting effects of this rough ridin' awful condition linger every day.
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So this time last year I basically couldn’t leave my apartment. It would be another 4 weeks that I officially went on short term disability at work.
I’ve been struggling a lot lately with what I assume is PTSD from everything. I recently upped my dosage of Remicade. Can still increase the frequency if needed.
I have a lot of days where I feel weird being able to walk, sit, drive, even going outside. What I went through is still very real and present. It’s been very hard working through. Add in other things and it’s just been rough.
I have and am doing better since I started my Remicade in November but the lasting effects of this rough ridin' awful condition linger every day.
Have you considered going to a counselor to deal with the mental side of things? Sounds like it could be a benefit to you. My sister is a counselor and there are definitely techniques that can help you process and integrate the trauma you experienced.
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So this time last year I basically couldn’t leave my apartment. It would be another 4 weeks that I officially went on short term disability at work.
I’ve been struggling a lot lately with what I assume is PTSD from everything. I recently upped my dosage of Remicade. Can still increase the frequency if needed.
I have a lot of days where I feel weird being able to walk, sit, drive, even going outside. What I went through is still very real and present. It’s been very hard working through. Add in other things and it’s just been rough.
I have and am doing better since I started my Remicade in November but the lasting effects of this rough ridin' awful condition linger every day.
Have you considered going to a counselor to deal with the mental side of things? Sounds like it could be a benefit to you. My sister is a counselor and there are definitely techniques that can help you process and integrate the trauma you experienced.
Yeah I have. I did for a bit earlier this year and recently started again. I might switch up my therapist because I don’t feel like I’m getting the benefit I need from it. When I was still very sick I was basically just in survival mode. Now that I don’t have the pain anymore my mind still goes back to it, it’s weird and just a lot so I need to make it more of a priority.
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So this time last year I basically couldn’t leave my apartment. It would be another 4 weeks that I officially went on short term disability at work.
I’ve been struggling a lot lately with what I assume is PTSD from everything. I recently upped my dosage of Remicade. Can still increase the frequency if needed.
I have a lot of days where I feel weird being able to walk, sit, drive, even going outside. What I went through is still very real and present. It’s been very hard working through. Add in other things and it’s just been rough.
I have and am doing better since I started my Remicade in November but the lasting effects of this rough ridin' awful condition linger every day.
Have you considered going to a counselor to deal with the mental side of things? Sounds like it could be a benefit to you. My sister is a counselor and there are definitely techniques that can help you process and integrate the trauma you experienced.
Yeah I have. I did for a bit earlier this year and recently started again. I might switch up my therapist because I don’t feel like I’m getting the benefit I need from it. When I was still very sick I was basically just in survival mode. Now that I don’t have the pain anymore my mind still goes back to it, it’s weird and just a lot so I need to make it more of a priority.
Have you considered just stuffing the mental pain down a hole so deep you'll never be able to find it again?
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So this time last year I basically couldn’t leave my apartment. It would be another 4 weeks that I officially went on short term disability at work.
I’ve been struggling a lot lately with what I assume is PTSD from everything. I recently upped my dosage of Remicade. Can still increase the frequency if needed.
I have a lot of days where I feel weird being able to walk, sit, drive, even going outside. What I went through is still very real and present. It’s been very hard working through. Add in other things and it’s just been rough.
I have and am doing better since I started my Remicade in November but the lasting effects of this rough ridin' awful condition linger every day.
Have you considered going to a counselor to deal with the mental side of things? Sounds like it could be a benefit to you. My sister is a counselor and there are definitely techniques that can help you process and integrate the trauma you experienced.
Yeah I have. I did for a bit earlier this year and recently started again. I might switch up my therapist because I don’t feel like I’m getting the benefit I need from it. When I was still very sick I was basically just in survival mode. Now that I don’t have the pain anymore my mind still goes back to it, it’s weird and just a lot so I need to make it more of a priority.
Have you considered just stuffing the mental pain down a hole so deep you'll never be able to find it again?
That's what she said
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I've been going thru something but it pales in comparison so maybe I'll take it the "shame yourself" thread.
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Today marks 1 year since I went on short term disability. Crazy.
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Hey guys.
So it's been a while since I last gave an update here. My last big update was after a few weeks on Humira and I was doing a lot better. Well, that lasted until about the end of July. At which point my symptoms came back with a vengeance sadly. The start of August I was back to barely being able to leave my apartment and I had to do grocery delivery again. At the end of August my dad came down for a few days and went with me to my follow up appointment with my Dr. They said that sometimes it takes a while for the medicine to really start working again and we should wait a little longer.
I was still working but not as much and my boss kind of let me slack a bit because he knew what I was dealing with. Eventually tho he convinced me that I should go on FMLA/STD since that is what it is for. So since about the second week of Sept I have been off work and my mom came down at the same time and has stayed with me the past 2 months. I wouldn't have been able to take care of myself without her help. I have been back to being almost unable to walk or sit normally, sleeping can be rough getting comfortable too. I had been talking to my Dr and since it had been almost 4-5 months and seeing no results, we decided it was time to move on to something else. Humira is the ONLY approved medication to treat my condition, but there is another treatment that has seen positive results and is in the same class of drug as Humira. Through a lot of hoops and stuff I was finally approved for this new medication a few weeks ago. The medication isn't a new drug but treats a lot of the same things as Humira.
Tomorrow, finally, I start my new medication called Remicade. When I was using Humira it was just a shot I gave myself every 2 weeks, with Remicade it is done by infusion. So tomorrow I go to the infusion center and will get my first dose via infusion (IV). My mom left on Saturday morning, but my dad flew in Saturday afternoon and is taking me to get treatment. Then we are headed back to KS for a few weeks until I have to come back to Texas for my next infusion. I am so hopeful that this works better than Humira and keeps working. Dealing with chronic pain just takes it out of you and getting a glimpse of what a new life could be, and then having it taken back again has been very rough.
There are other drugs in the pipeline, but Remicade is the last line until then, so this needs to work. Anyways just thought I would give you guys an update. This is a terrible, terrible disease and I just want to get better and back to a semi normal life.
Go Cats
Today marks 1 year since my first dose that has given me a second chance at life. Crazy that it’s been a whole year. The day after I was in a wheelchair going through the airport. 4 days after I was able to turn over in bed for the first time in ~4 months. Spending Thanksgiving with my mom in AZ this week but my flight home Sunday will be my 30th flight this year, all but 4 have been vacations/trips. Lot to be thankful for this year, guys.
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You think going gluten free and dairy free is helping too? I know I feel a ton better when I eat that way but damn it's hard.
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You think going gluten free and dairy free is helping too? I know I feel a ton better when I eat that way but damn it's hard.
Yeah I think so, it's frustrating not really knowing if that's a trigger or not tho. Yes it is extremely hard, even ordering is hard because some stuff is just implied and not listed. An example being at a Mexican restaurant with a dish coming with rice and beans, it doesn't say it but the beans always have cheese on them. It's also frustrating because I know how much better something COULD taste with either of those added.
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You think going gluten free and dairy free is helping too? I know I feel a ton better when I eat that way but damn it's hard.
Yeah I think so, it's frustrating not really knowing if that's a trigger or not tho. Yes it is extremely hard, even ordering is hard because some stuff is just implied and not listed. An example being at a Mexican restaurant with a dish coming with rice and beans, it doesn't say it but the beans always have cheese on them. It's also frustrating because I know how much better something COULD taste with either of those added.
I know firsthand the difficulty of avoiding gluten while dining out. It's hidden seemingly everywhere.