Author Topic: Chronic Illness and FIRE?  (Read 4755 times)

ObsessedFIer

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Chronic Illness and FIRE?
« on: September 03, 2017, 01:59:07 PM »
Hey everyone, so I'm not sure where this thread will go but I wanted to see if there are others out there in the same situation as I.

I currently exercise daily and am in great physical shape. I do have an autoimmune disease that peeks its nasty head out from time to time, reminding me that it's there. The main cause has typically been stress from work. It has knocked me down from benching 300lbs at 175lbs to barely being able to hold my cell phone. I've been able to control it and put it back into remission but I feel a sense of urgency to FIRE as quickly as humanly possible because of the uncertainty of my health in the long run. I'm projected to reach FIRE in 3 years and will then spend my time intentionally, doing whatever makes me happy. My goals and aspirations have fallen by the wayside and have been replaced by my joy of reading, learning new things, being creative, hiking, finding my flow state, and doing anything active. I also would love to help people better their lives and live more intentionally.

I will say that this has been a wake up call and has totally changed my mindset. Most of us look to the future as some "perfect" state that you will be happy, competent to read/learn, healthy and active. I do believe that removing the stress from work, eating 100% clean (tough when you're a road warrior), and staying fit with meditation and yoga will keep this affliction in remission for many years to come. Also, advancements in medical technology should help as well.

I'd really like to hear other stories from people in the same situation as I. Has a chronic illness or health scare changed your mindset toward FI and what you want for your future self?
« Last Edit: September 03, 2017, 02:02:09 PM by ObsessedFIer »

joonifloofeefloo

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Re: Chronic Illness and FIRE?
« Reply #1 on: September 03, 2017, 02:06:28 PM »
I had a similar situation. I wrote all my experience and tips in a book presented here:
https://brainquirkcash.com/book/

Yeah, I think experiencing disability (including severe, chronic or intermittent symptoms) is a real gamechanger. During that (and for some of us that's a lifetime), we orient differently to life. Also, few of the same "life rules" apply.

Yes, the impact of stress (whether from work or another source) can exacerbate disability symptoms. I think you're so smart to aim for FIRE ASAP. If you're eligible for disability supports, including payments, I encourage you to apply for those. That can help buffer you.

With such an issue, you might also look at strategies specific to disability, such as additional options for legal tax shelters, deductions, etc.

I'm so glad you're focusing on that fun stuff too! :)

wenchsenior

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Re: Chronic Illness and FIRE?
« Reply #2 on: September 03, 2017, 04:43:44 PM »
I'm in great conflict over this right now.  I was diagnosed with an endocrine disorder at 29 after several years of worsening illness.  I figured out how to manage it and felt bullet proof through my 30s. Then, right after I turned 40, my whole body started to fall apart and I became increasingly ill with a multitude of symptoms...new ones every few months it seemed.  Digestive problems, skin rashes, huge bald patches, vision problems, nervous system problems, heart palpitations, soft tissue/ligament/tendon inflammations, severe migraines, chronic fibromyalgia like pain, muscle weakness, etc etc etc.  Quite frightening, to be honest.  I did a huge long tiresome post on it in Off Topic a few months ago.

Now it's 6 years and a shitload of tests later, and I still have no real concrete answers. I have two new confirmed autoimmune diseases (meaning three total confirmed chronic diseases/disorders, but none of the three should be causing the vast majority of my symptoms according to doctors).  So I'm assuming I have something else lurking undiagnosed.   I'm considering going to Mayo, but I've spent so damn much money the past few years I have to save up for the co-pays.  My doctors are tired of me, and are starting to just shrug and offer anti-depressants, which would be fine if my main problem was depression, but it's not.  The doctors' attitudes come off as dismissive (and sexist, I strongly suspect).

The worst thing was how my ability to do all the things I used to do just dropped away.  It felt like pieces of myself were being killed off.  Chronic pain made traveling into an ordeal rather than something to enjoy. Sitting at my desk all day to work became problematic and I started falling behind on my workload.  Pain and uncertainty wore at my mental state and made me crabby (normally I'm pretty even-keeled).  Even gentle exercise was incredibly challenging because I would get 'rebound pain' far beyond normal DOMS.  Flares of neurological symptoms made even daily functioning like cutting food for dinner difficult.  I gave up field work (which I'd been doing for years).  My voice hoarsened and would go out after a few minutes of talking, so even conversation with family and friends has become difficult.  I often feel 100 years old, not middle aged.

Bitch bitch bitch. 

I'm in a bit of an upswing this summer, symptom-wise, so I'm feeling more optimistic than I have in a couple years...and most notably I'm trying to mull over longer term decisions/plans than I am able to when symptoms are flaring up and I'm just trying to get through each day.  During the bad periods, it's hard to even see why I should look forward to a retirement if I'm always going to feel shitty, and potentially keep feeling shittier.  Then during better periods, like now, I wonder if I should just STOP WORKING RIGHT NOW.

It's a dilemma. DH makes enough money so that I wouldn't have to work to pay bills, and I am certain that constant desk work is exacerbating some symptoms (mainly pain).  Also, if I stopped, maybe I could take better care of myself and also just hit all the remaining specialist doctors that I haven't seen/Mayo, and try to get some answers once and for all, cost be damned.

But it's hard for me to adopt a 'cost be damned' mindset.  I have been spending a ton on healthcare for very little gain, and my income covers that, as well as about half our savings rate, AND it helps support both our mothers.  So losing my income would definitely be a major hit to our FI plans (currently slotted for ~5-6 years from now).

On the other hand, if things continue to worsen, with or without answers as to why I'm ill...I won't be able to do much to enjoy FIRE in another 5-10 years anyway.  And I could potentially run our FIRE bills up hugely, which means I should really keep working as long as possible.

I'm honestly not sure what to do. 
« Last Edit: September 03, 2017, 04:45:57 PM by wenchsenior »

hops

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Re: Chronic Illness and FIRE?
« Reply #3 on: September 03, 2017, 09:05:08 PM »
I've been sick since I was a toddler, and have had several brushes with death since then, so the idea of financial independence has always appealed to me because I wasn't sure I'd make it to a traditional retirement age. Besides, when I'm in remission, even if it's just for a few months, I want my time to belong to me.

As an adult I've stuck with a low-paying job because of the amazing health insurance and a flexible schedule that lets me take lots of time off for medical appointments. So far this year I've cost my insurance company almost six figures, but all I've paid is a $1,000 deductible and the cost of office visit and prescription co-pays.

When contemplating my financial future, nothing worries me as much as medical expenses. I used to be interested in ERE, but even if my fiancee hadn't put the kibosh on that, anxiety about the cost of illness would have. If any of you have retired early and use expensive treatments like Tysabri, Remicade or Humira, what have your experiences been with the money side of that?

snacky

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Re: Chronic Illness and FIRE?
« Reply #4 on: September 03, 2017, 09:30:40 PM »
I got sick all of a sudden in early 2016, and flunked out of the working world. It's been a year and a half and it feels very much like i'm not getting better. Maybe I will, but I can't plan for that. So I plan a future with limited abilities. Not what I expected...

Anyways, there are a few of us here.

azure975

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Re: Chronic Illness and FIRE?
« Reply #5 on: September 03, 2017, 10:55:35 PM »
I have some mental health issues and that is one of the driving forces behind my desire to FIRE. I'm not so much motivated by the desire to do fun and interesting things after FIRE as much as making sure that I'm provided for if I ever get to the point where I can't work or where it becomes very difficult to. Having a plan helps a lot with my anxiety.

LateToTheParty

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Re: Chronic Illness and FIRE?
« Reply #6 on: September 04, 2017, 05:47:18 AM »
Stopping in to say hello. I can relate completely. I went from 100% healthy, marathoner/executive to developing an autoimmune disease which brought me to my knees about 5 years ago.   I had to reevaluate my priorities. I discovered MMM about 2 years ago when googling early retirement since the work demands were/are exhausting me; I knew I could not sustain much longer.
DH and I have made considerable changes, and are positioning ourselves to have me move into a part time, direct contributer position and move away from management.  I can receive full benefits at part time status and plan to work mainly for the healthcare benefits and allow the stash to grow. Healthcare in retirement is my main worry bead.

mancityfan

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Re: Chronic Illness and FIRE?
« Reply #7 on: September 04, 2017, 07:18:13 AM »
I had cancer 9 years ago, made it through that. New cancer diagnosis this spring, now in remission. A complete game changer. I am 53, if I should ever relapse, next treatments would cost in the $500-600K area without insurance. I had been hoping to look at retirement within 3 years, but will go to 60 at least as I will be eligible to get retiree health benefits at 90% coverage. Whole outlook has changed to enjoying life more day to day, rather than looking off into the future.

ElleFiji

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Re: Chronic Illness and FIRE?
« Reply #8 on: September 04, 2017, 07:26:25 AM »
Chronic illness also led me to look into FI. Knowing that full time work might not be an option and being too independent to rely on family, I started to look at my choices.

It's complicated - I want to be FI because of my health, and my health increases my spending and decreases my income potential. So the attractive 5-10 year early retirements aren't an option for me. But I can do 15, or 10 plus part time or some weird combination. Quite a few people here are in the same boat, and more have kids with disabilities.

thriftycanadian

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Re: Chronic Illness and FIRE?
« Reply #9 on: September 04, 2017, 07:41:01 AM »
Hi all,

Working at the moment, close to FI.  Support a family of 5 on my income and been going hard for 20 years in sales, sales management.  Had a few health issues that are directly job/stress related in the last 5 years - thankful to have a cushion in case I need to bail out of the work world - even just to take a break or go back to school to retraining something new.  Knowing I can do this helps.

The nice thing about the MMM lifestyle is that it teaches lifestyle cost efficiency which allows for flexibility in terms of part time work instead of full time and mini retirements sabbaticals etc - even if one is not yet FI.

Sun Hat

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Re: Chronic Illness and FIRE?
« Reply #10 on: September 04, 2017, 09:06:04 AM »
Hi OP and others in the same boat,

I was high-achieving before being injured at work. Prior to my injury, I wasn't Mustaschian, but I did have a ~50% savings rate and was aggressively paying down my mortgage (had I invested more of it instead, I'd be LOADED now, but as far as bad ideas, it's not the worst I've had). Releasing earlier than I had anticipated means a smaller pension, but with a paid off house and savings, I'm FI.  Had I not been careful with my money before retirement, I'd be in a disastrous position now. Instead, I have the luxury of being able to focus on my health.

MMM has a lot of value for me because in my day to day life I see the real value of an attitude of badassity/resilience, and the liberation that having a stash of money provides.

« Last Edit: October 01, 2017, 02:59:00 PM by Sun Hat »

RedmondStash

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Re: Chronic Illness and FIRE?
« Reply #11 on: September 04, 2017, 09:26:48 AM »
All this really resonates for me too. I've dealt with mystery chronic illness symptoms (mostly fatigue and digestive issues) for more than a decade. Recently, I've come to realize they might have been caused by taking Cipro, a fluoroquinolone antibiotic that causes permanent damage in some people, in 2005. (If you want to read about other folks dealing with fluoroquinolone toxicity, you could start on https://floxiehope.com/.)

I feel like I'm in this weird race between fatigue and FI; every month I make it to the end of at work feels like a triumph, and one step closer to retirement. I've negotiated for part-time hours at almost every job I've had in the last decade or so, and I currently have a great job I really like, but I'm honestly never sure I'll make it through the next week or month. It definitely makes reaching FIRE feel more urgent, which can lead to stress, anxiety, and an unhealthy level of frugality.

I'm in the best physical health I can be; I know exactly how many minutes I can manage on the treadmill or stationary bike, I eat well, I rest a lot. I've seen countless doctors and tried dozens of supplements without much benefit. It's frustrating.

And I don't know what retirement will look like for me. I have dreams of travel, really taking in the world, but since it's hard to be on my feet, they don't seem realistic. Retirement for me may mean some isolation, a lot of quiet time, books, comic books, video games, and TV, just because I don't have the physical or emotional strength to be more active in my own life.

I'm still looking for answers that will return some energy to me, but I can't count on that.

So yeah, I'm in a hurry to reach FIRE because I'm not sure how much longer I'll be able to work, but I worry I'll lose even more function if I'm not working. It's a double-edged sword.

Good thread, OP. I'm sorry to see so many of us in this leaking boat.

wenchsenior

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Re: Chronic Illness and FIRE?
« Reply #12 on: September 04, 2017, 09:40:37 AM »
All this really resonates for me too. I've dealt with mystery chronic illness symptoms (mostly fatigue and digestive issues) for more than a decade. Recently, I've come to realize they might have been caused by taking Cipro, a fluoroquinolone antibiotic that causes permanent damage in some people, in 2005. (If you want to read about other folks dealing with fluoroquinolone toxicity, you could start on https://floxiehope.com/.)

I feel like I'm in this weird race between fatigue and FI; every month I make it to the end of at work feels like a triumph, and one step closer to retirement. I've negotiated for part-time hours at almost every job I've had in the last decade or so, and I currently have a great job I really like, but I'm honestly never sure I'll make it through the next week or month. It definitely makes reaching FIRE feel more urgent, which can lead to stress, anxiety, and an unhealthy level of frugality.

I'm in the best physical health I can be; I know exactly how many minutes I can manage on the treadmill or stationary bike, I eat well, I rest a lot. I've seen countless doctors and tried dozens of supplements without much benefit. It's frustrating.

And I don't know what retirement will look like for me. I have dreams of travel, really taking in the world, but since it's hard to be on my feet, they don't seem realistic. Retirement for me may mean some isolation, a lot of quiet time, books, comic books, video games, and TV, just because I don't have the physical or emotional strength to be more active in my own life.

I'm still looking for answers that will return some energy to me, but I can't count on that.

So yeah, I'm in a hurry to reach FIRE because I'm not sure how much longer I'll be able to work, but I worry I'll lose even more function if I'm not working. It's a double-edged sword.

Good thread, OP. I'm sorry to see so many of us in this leaking boat.

Holy shit.  I've taken maybe 5 or 6 rounds of cipro in the past few years, for utis...I  have some in my cupboard right this minute, to take in in case I get one while traveling. 

Rachel_the_Lark

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Re: Chronic Illness and FIRE?
« Reply #13 on: September 04, 2017, 10:27:31 AM »
Had my hospital stay ending with a handful of diagnoses back in January.  I'm having success with the meds I'm on now (even if it's more than I'd like) so now it's all about focusing on better managing the stress and all to see if I can start dialing them down.

DH and I have made considerable changes, and are positioning ourselves to have me move into a part time, direct contributer position and move away from management.

How have you felt about making this shift?  I know my career goals need to change, but I just got my MBA with goals of staying on the fast track.  Realistically I know that good health is the bottom line...but man it stings.

Imma

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Re: Chronic Illness and FIRE?
« Reply #14 on: September 04, 2017, 10:50:53 AM »
I've been sick since I was a toddler, and have had several brushes with death since then, so the idea of financial independence has always appealed to me because I wasn't sure I'd make it to a traditional retirement age. Besides, when I'm in remission, even if it's just for a few months, I want my time to belong to me.

As an adult I've stuck with a low-paying job because of the amazing health insurance and a flexible schedule that lets me take lots of time off for medical appointments. So far this year I've cost my insurance company almost six figures, but all I've paid is a $1,000 deductible and the cost of office visit and prescription co-pays.

When contemplating my financial future, nothing worries me as much as medical expenses. I used to be interested in ERE, but even if my fiancee hadn't put the kibosh on that, anxiety about the cost of illness would have. If any of you have retired early and use expensive treatments like Tysabri, Remicade or Humira, what have your experiences been with the money side of that?

I think we have the same illness. I'm in Europe, so I can't help you with the cost of medication but I know I am enternally grateful I was born in a country where I pay €1600 plus 5,4% of my income in taxes (but never more than €2900) and in return get unlimited health care. I have had Remicade and Humira in the past, I'm now on Entyvio. I've never had the remission-relapse type, I'm just reasonably ill most of the time. My main problem is being tired, I am able to work etc. so in that way I'm kind of lucky. I never have any pain. I'm currently on a liquid diet as that's a lot more effective than medication. 

I got ill at a young age too, and it defined my life in many ways. It gave me a positive mindset, I have learned to live intentionally and to enjoy the small things in life, but realistically, I've also missed out on many opportunities. I know what I can and can't do in my physical condition and I have made sensible choices. I chose a boring degree in college and I now have a boring job. It's parttime and flexible and the pay isn't bad, but I never would have chosen this career path. I have been actively thinking of alternative careers, but parttime jobs that pay well are hard to come by and self-employment is a huge risk. I live a totally non-adventurous life. While I'm the domestic type and I like being home and watching Netflix, I would have liked to see and do more. My s/o is a musician and is away from home often. I know his work is boring 90% of the time too (just waiting and driving)  at least he got to choose his career and sees a bit of the world. My days are filled with work, medical appointments and domestic chores and very little fun.

Even though FIRE is not realistic in my situation (my income is just too low to be able to save a lot, even while living quite frugally) I am planning to retire as soon as it's financially possible. I don't enjoy my job, the only reason I work is so I have money to pay the bills. It takes away a lot of energy and it's not bringing anything back. I too think I might not make the conventional retirement age, so if I don't at least try to FIRE I might never retire at all. FIRE'ing in my country is also more difficult, because the government limits the use of tax-friendly retirement accounts. You can only access the money in those accounts at the conventional retirement age (67 right now). We have a wealth tax so having investments in accessible accounts means your ROI is much lower.

The biggest thing my illness is taking from my is the chance to have a family of my own. This is something that's getting more painful. I'm 27 now and and most of my friends have families. For 10 years I've had the strict advice not to get pregnant at all. I know that's for good reason, but it hurts a lot to think I might never even get to the stage where I'm medically allowed to try to get pregnant. I know there's still some time, but as my health has barely changed for the last 10 years and I'll likely have low fertility, it feels like that door is closing slowly and there's little I can do about it. I struggle with purpose sometimes.

hops

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Re: Chronic Illness and FIRE?
« Reply #15 on: September 04, 2017, 01:27:46 PM »
The biggest thing my illness is taking from my is the chance to have a family of my own. This is something that's getting more painful. I'm 27 now and and most of my friends have families. For 10 years I've had the strict advice not to get pregnant at all. I know that's for good reason, but it hurts a lot to think I might never even get to the stage where I'm medically allowed to try to get pregnant.

That's something it has taken me a long time to come to terms with. I always knew fertility would be a long-shot, thanks to extensive abdominal operations I had pre-puberty, but I allowed myself a sliver of hope that one day all the stars would align (lasting mega-remission and surgery to clear out scar tissue could've possibly paved the way for IVF) and the choice would at least be mine to make.

As it is, a coterie of specialists have told me to abandon that line of thinking. I'm in my early thirties. The funny thing is, I've always wanted to adopt. Then I ended up with a same-sex partner who would like at least one biological kid, but shouldn't carry it herself for medical reasons, and here I am with a uterus that will be of no use to her in realizing that dream. The money we'll save by not pursuing IVF will go toward adoption fees instead.

Have you noticed any benefit at all from the Entyvio? My gastroenterologist wanted to prescribe it in the past but my rheumatologist and dermatologist prefer treatments that also help with extraintestinal complications. The worst part of starting an expensive medication is waiting to hear what my insurer will cover and whether copay assistance is available. In the U.S., pharmaceutical companies might cover most (sometimes all) of your copay if you're covered by commercial insurance. If you're on Medicare or Medicaid, you're usually ineligible for some of those programs but alternate assistance might be available. It can add layers of paperwork headaches for patients who don't work due to disability.

Imma

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Re: Chronic Illness and FIRE?
« Reply #16 on: September 04, 2017, 03:03:01 PM »
The biggest thing my illness is taking from my is the chance to have a family of my own. This is something that's getting more painful. I'm 27 now and and most of my friends have families. For 10 years I've had the strict advice not to get pregnant at all. I know that's for good reason, but it hurts a lot to think I might never even get to the stage where I'm medically allowed to try to get pregnant.

That's something it has taken me a long time to come to terms with. I always knew fertility would be a long-shot, thanks to extensive abdominal operations I had pre-puberty, but I allowed myself a sliver of hope that one day all the stars would align (lasting mega-remission and surgery to clear out scar tissue could've possibly paved the way for IVF) and the choice would at least be mine to make.

As it is, a coterie of specialists have told me to abandon that line of thinking. I'm in my early thirties. The funny thing is, I've always wanted to adopt. Then I ended up with a same-sex partner who would like at least one biological kid, but shouldn't carry it herself for medical reasons, and here I am with a uterus that will be of no use to her in realizing that dream. The money we'll save by not pursuing IVF will go toward adoption fees instead.

Have you noticed any benefit at all from the Entyvio? My gastroenterologist wanted to prescribe it in the past but my rheumatologist and dermatologist prefer treatments that also help with extraintestinal complications. The worst part of starting an expensive medication is waiting to hear what my insurer will cover and whether copay assistance is available. In the U.S., pharmaceutical companies might cover most (sometimes all) of your copay if you're covered by commercial insurance. If you're on Medicare or Medicaid, you're usually ineligible for some of those programs but alternate assistance might be available. It can add layers of paperwork headaches for patients who don't work due to disability.

I'm sorry to hear that both of you are unable to carry a child :( But I hope you are able to adopt in the future. In here, you need to pass a health check to be allowed to adopt and sadly I'll never pass that.

For me, Entyvio works very well, but only in combination with Lanvis. You can't take either during pregnancy. But I haven't had any surgery and I don't really have extraintestinal complications. I am experiencing side effects (mild liver failure) from the Lanvis so I've recently stopped taking it and no one really knows what's going to happen now. For me, Entyvio has been the best biological so far because it doesn't suppress your entire immune system. I used to have constant colds and strep throats and a serious infection nearly every year. I don't have that at all with the Entyvio. In some ways it has given me my life back because for the first time I'm able to hold down a steady job. I used to lose jobs every time I was hospitalized. I've had my current job for a year and I haven't called in sick yet.

I can't imagine how bad it must be if your insurance company decides which meds you are allowed to take and not your doctors. I know my consultant has to answer to her department head if she chooses to prescribe expensive medication, but in the end she decides if it's a medical necessity. It must be really difficult for someone to decide they're really too ill to work if that means they loose their access to vital medication. You have to choose the lesser of two evils, but how do you decide which one is the lesser one?

hops

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Re: Chronic Illness and FIRE?
« Reply #17 on: September 04, 2017, 05:14:36 PM »
I'm sorry to hear that both of you are unable to carry a child :( But I hope you are able to adopt in the future. In here, you need to pass a health check to be allowed to adopt and sadly I'll never pass that.

For me, Entyvio works very well, but only in combination with Lanvis. You can't take either during pregnancy. But I haven't had any surgery and I don't really have extraintestinal complications. I am experiencing side effects (mild liver failure) from the Lanvis so I've recently stopped taking it and no one really knows what's going to happen now. For me, Entyvio has been the best biological so far because it doesn't suppress your entire immune system. I used to have constant colds and strep throats and a serious infection nearly every year. I don't have that at all with the Entyvio. In some ways it has given me my life back because for the first time I'm able to hold down a steady job. I used to lose jobs every time I was hospitalized. I've had my current job for a year and I haven't called in sick yet.

I'm glad Entyvio has worked so well for you, but that's terrible about the Lanvis. One of my current meds (methotrexate) can cause liver problems but so far my blood work is normal. It was great to hear about Entyvio reducing your number of colds and infections; the infections you pick up when immunosuppressed can be just as scary as the original illness. But I cannot imagine how awful it must be to know your ability to adopt is restricted due to the severity of your disease. Here, if an adoption agency is concerned about illness interfering with your ability to parent, your doctor can write a note assuaging their fears. It is tremendously unfair that other avenues to parenthood can be cut off to you.

(Edited because I'd skimmed this at first and missed the part about discontinuation.)
« Last Edit: September 04, 2017, 10:00:46 PM by hops »

LateToTheParty

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Re: Chronic Illness and FIRE?
« Reply #18 on: September 04, 2017, 06:53:35 PM »
Had my hospital stay ending with a handful of diagnoses back in January.  I'm having success with the meds I'm on now (even if it's more than I'd like) so now it's all about focusing on better managing the stress and all to see if I can start dialing them down.

DH and I have made considerable changes, and are positioning ourselves to have me move into a part time, direct contributer position and move away from management.

How have you felt about making this shift?  I know my career goals need to change, but I just got my MBA with goals of staying on the fast track.  Realistically I know that good health is the bottom line...but man it stings.

I have not made the shift yet, but am putting the pieces in place to do so.  It will be interesting to be sure - staff are used to coming to me to make the decisions or to facilitate the solution to challenges.
Dilemma with your shiny MBA - perhaps you can implement reasonable work boundaries and make it work?

Cheers to good health.

RedmondStash

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Re: Chronic Illness and FIRE?
« Reply #19 on: September 04, 2017, 07:10:36 PM »
All this really resonates for me too. I've dealt with mystery chronic illness symptoms (mostly fatigue and digestive issues) for more than a decade. Recently, I've come to realize they might have been caused by taking Cipro, a fluoroquinolone antibiotic that causes permanent damage in some people, in 2005. (If you want to read about other folks dealing with fluoroquinolone toxicity, you could start on https://floxiehope.com/.)

Holy shit.  I've taken maybe 5 or 6 rounds of cipro in the past few years, for utis...I  have some in my cupboard right this minute, to take in in case I get one while traveling.

Fluoroquinolone antibiotics don't affect everyone in the same way, but for some people, they're horribly damaging, and the effects apparently are cumulative. I only found out about FQ issues a couple of years ago; before that, I just had mystery symptoms with no idea why. If you're dealing with chronic symptoms without a clear diagnosis, you might want to do some online research about fluoroquinolone toxicity.

I can tell you that most doctors have no clue how dangerous they are, and will tell you that they can't possibly be the cause of your problems. But they can. Doesn't mean they are, of course. It's just one potential avenue to explore.

Good luck to you.

Captain Cactus

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Re: Chronic Illness and FIRE?
« Reply #20 on: September 04, 2017, 07:30:24 PM »
Chronic, autoimmune disease here:  Addison's Disease.

Life is short, could end with a stomach bug. 

Gotta buy my freedom ASAP.  Think I've got 4-5 years left.

Hang in there.

ObsessedFIer

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Re: Chronic Illness and FIRE?
« Reply #21 on: September 04, 2017, 08:44:46 PM »
Wow, thank you all for sharing your stories, it's nice to be able to relate to so many others in the same situation (not that I'd ever wish it upon anyone). I'm also on a biological drug called Enbrel, and it scares me every time I have to inject it. The immunosuppression is really terrifying and I have experienced all sorts of strange ailments since starting it. Trying a few alternatives now as I just don't feel right about using this long term. I think of it like antibiotics, when you have strep throat you don't take the antibiotic and continue using it forever. I know that a chronic condition is different but the side effects come in waves, so why not treat them so. I found an awesome D.O. who believes in minimal medication, so, pushing out doses as far as possible and drug holidays to see how things are going.

Looking down the line at age 60+, and typical retirement just doesn't make ANY sense to me right now, who knows how things will be then, and if I'd even enjoy free time. Just the thought of spending my healthiest years behind a desk, pushing someone else's dream makes me queazy. I feel that I'm slacking in a sense that I haven't gone after any side hustles in years. I've been relying on my pay and investments. If I could put together something that pulled $20-30k a year in passive income, I'd be out right now. I'm going to start scrapping the Netflix and using the time to find my side hustle. I know there are a few threads around here on the topic.

Hardest thing for me right now is figuring out how to build a somewhat normal life as I feel like a black sheep (currently in my late 20's). Alcohol doesn't agree with me, and I have some funky diet restrictions. It makes dating difficult, to say the least. Trying to find someone understanding is definitely a challenge.

Imma

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Re: Chronic Illness and FIRE?
« Reply #22 on: September 05, 2017, 08:49:06 AM »
I get the black sheep feeling. I have a supportive partner and some close friends that I'm really happy with, but my family isn't supportive. They don't really believe I'm ill at all, let alone the extent of my illness. They avoid talking about subjects like work because they have the feeling I'm not living up to my full potential. I don't work fulltime, but I have a perfectly reasonable boring office job like millions of other people. It's not exciting, but it pays the bills and I do get the opportunity to learn new skills all the time.

Some of them don't really believe I actually have a job and that I'm secretly on disability benefits or welfare, others believe I'm in some sort of subsidized employment scheme because "who would employ you?". Now, I don't believe there's anything wrong if that's anyone's situation because life can throw shit at you and sometimes you need help to get to a better place, but it hurts that my own parents and siblings can't believe anyone would employ me. I've always tried hard and put in a lot of effort and I have a degree.

I don't drink either and I have to call off plans frequently. I don't have a lot of friends, but I'm close to the ones I have and most of them suffer from some sort of chronic condition, too. They understand because they go through the same.

I'd like a side hustle as well, but I'm not sure if that's realistic. My illness is unpredicatable. I'm mostly focused on investing and maybe in the future I'd like to invest in a rental property.

RedmondStash

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Re: Chronic Illness and FIRE?
« Reply #23 on: September 05, 2017, 09:26:18 AM »
Holy shit.  I've taken maybe 5 or 6 rounds of cipro in the past few years, for utis...I  have some in my cupboard right this minute, to take in in case I get one while traveling.

Oh, and btw, wenchsenior, new medical recommendations say doctors should not prescribe Cipro (or other FQs) for simple UTIs, because FQs are so dangerous. They should be an antibiotic of last resort only. You might want to chat with your doc about finding a different antibiotic for UTIs. I can tell you that I would not take an FQ again unless my life was at stake and there were literally no other options. And possibly not even then.

joonifloofeefloo

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Re: Chronic Illness and FIRE?
« Reply #24 on: September 05, 2017, 09:38:40 AM »
Imma, I can relate to the people not believing part. In my case, there are two common scenarios:

1. Some people have a hard time believing I get money for what I do (because my disability-friendly work seems too weird, niche, etc).

2. Others are certain I have no disability (because they only see me when I'm out and about, and engaged in the few things I'm capable of).

These days, I'm in a phase of being more acutely aware of the impact of my disability, and hovering somewhere right between acceptance of that impact and sadness about it. I often prefer when I'm not aware of it (because I've worked things out so well).

I also find that I want to plan for two selves: one the gregarious, robust self and one the...not. It's tricky to create a life that magically supports both "versions" of me. I'm required right now to do some planning re: housing, and am quite lost because of this discrepancy.

wenchsenior

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Re: Chronic Illness and FIRE?
« Reply #25 on: September 05, 2017, 10:56:53 AM »
Holy shit.  I've taken maybe 5 or 6 rounds of cipro in the past few years, for utis...I  have some in my cupboard right this minute, to take in in case I get one while traveling.

Oh, and btw, wenchsenior, new medical recommendations say doctors should not prescribe Cipro (or other FQs) for simple UTIs, because FQs are so dangerous. They should be an antibiotic of last resort only. You might want to chat with your doc about finding a different antibiotic for UTIs. I can tell you that I would not take an FQ again unless my life was at stake and there were literally no other options. And possibly not even then.

:Sigh:  I'm allergic to the two other common ones, sulfas and Keflex etc.   

RedmondStash

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Re: Chronic Illness and FIRE?
« Reply #26 on: September 05, 2017, 02:52:25 PM »
2. Others are certain I have no disability (because they only see me when I'm out and about, and engaged in the few things I'm capable of).

I get this. I can "pass" for normal at work; only a few people know I have chronic health issues, and I kick ass at productivity, so no one has any complaints about my work. I don't go to evening or weekend social events, so they may think I'm standoffish, but whatevs.

I'm grateful that I can pass because I'm pretty sure that's how I get jobs, but it can get tricky when someone doesn't understand why you aren't attending their (evening, weekday) birthday party.

I actually suspect that lots of chronically ill people are extremely good at managing their time and skills, and make stellar employees because they know and protect their boundaries in such a way as to guarantee high productivity. But I doubt it would work to walk into an interview and say, "I have chronic health issues. Hire me!"

Imma

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Re: Chronic Illness and FIRE?
« Reply #27 on: September 30, 2017, 02:19:57 PM »
2. Others are certain I have no disability (because they only see me when I'm out and about, and engaged in the few things I'm capable of).

I actually suspect that lots of chronically ill people are extremely good at managing their time and skills, and make stellar employees because they know and protect their boundaries in such a way as to guarantee high productivity. But I doubt it would work to walk into an interview and say, "I have chronic health issues. Hire me!"

I think that's absolutely true. I think I'm just as effective as any other employee, except I do it in less hours. I know quite a lot of super effective people who also happen to be quite ill. I definitely see the pattern.

I'm actually going through a rough patch in coping with my illness right now. I don't like my work at all, even though I'm pretty good at it and get paid well for what I do. I don't dislike my coworkers, but they are older men (50s, 60s) and enternally grumpy. I'm a normally cheerful young woman in her 20s.  They are courteous to me, but I do notice that their negative attitudes are catching. We don't talk much, they don't really like me being cheerful, I get the work done and go home feeling down.

When I get home tired I don't have much to cheer me up either. There's my share of the housework that never seems to get done, no matter how much effort I put into it. I exercise two nights a week after work because it works wonders for my energy levels, but I don't ejoy it and I get home exhausted and jump into bed almost straight away. My fiance is a wonderful guy and he's extremely understanding and the only real family I've ever had, but he's almost never home. He's a musician with a regular job on the side, whcih means he works about 6 days a week, is sometimes gone for days at the time and when he's home he's usually tired.

Socialising is difficult too because our friends and family are spread out across the country and I often lack the energy to visit them. I have definitely lost friends because of my illness. I don't want him to lose friends too, so I encourage him to visit people even when I can't, but I hate having to stay home and watch Netflix instead. Friends have less time now, too, because they all have kids (we can't). My only frequent social contact outside of my fiance is a weekly local sewing bee.

We are decades from FIRE because in our country with our tax system it's quite hard to achieve. As my health is getting slowly worse, no matter how much time and energy I put in looking after my body, sometimes it feels like this disease is stealing all possible fun from my life. Most of the time I can cope, but I go through times where coping is hard. I struggle with finding a sense of purpose sometimes.

InquisitiveMind

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Re: Chronic Illness and FIRE?
« Reply #28 on: September 30, 2017, 03:44:07 PM »
I was diagnosed with muscular dystrophy at age 12, and have been living with that disease for the last 3 decades (age 40). I realized early on that if I didn't become very well educated and acquire high earning potential, my standard of living in my adult years would likely be unacceptable, with the cost of assisted living being so high. I earned a PhD in a technical field and now have the luxury of having an entirely remote job, so that I don't need to waste time and energy on commuting. I love remote work so much that even if I were able-bodied, I think I would need to insist on a job that allowed me to work remotely; I don't miss the years I spent sitting in a cubicle farm...

To echo others' thoughts, yes, I have also thought about money differently since I was diagnosed... I regard each dollar saved as a small lease on additional time alive with a (by my definition) high standard of living (that is, freedom to pursue intellectual inquiry and to be selective about which job I hold, without having to worry about where my next paycheck is coming from). Accordingly, I have typically always been frugal. Since I can't travel and rarely leave the house, expenses that others consider useful such as vacations, concerts, and nice clothes are not on my radar, and I live a very simple and work-focused life, enjoying visits with friends and collaborative work with colleagues who are at the top of our field and a joy to work with.

Actually, I will say that as I have become more disabled over the years due to this degenerative disease, I have actually become *more* happy, because I'm no longer a disabled person trying to survive in an able-bodied world, but now have my own little sphere of existence that works for me, and that doesn't require me to conform to the expectations of able-bodied people. Freeing myself of that need to conform has been very rewarding, and I often work 70+ hours per week immersed in creative, challenging, mind-expanding tasks... I can't imagine having a more enjoyable existence, even if I were to regain my ability to walk and to function in the external world. If nothing else, this chronic condition has forced me to focus on what is really important to me (learning, discovering, and creating) and to let everything else fall away.

pbkmaine

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Re: Chronic Illness and FIRE?
« Reply #29 on: September 30, 2017, 03:52:40 PM »
InquisitiveMind, I have a good friend with Parkinson’s who is facing a future where leaving the house will be difficult. How do you take care of things like food shopping?

Sun Hat

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Re: Chronic Illness and FIRE?
« Reply #30 on: September 30, 2017, 04:50:04 PM »
InquisitiveMind - your outlook on life is inspiring. Since I'm still coming to terms with my limitations, I struggle with creating meaning and enjoyment. Were there any philosophies or books that you can recommend that helped you to identify your abilities and plan an enjoyable life around them?

InquisitiveMind

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Re: Chronic Illness and FIRE?
« Reply #31 on: September 30, 2017, 09:41:15 PM »
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InquisitiveMind, I have a good friend with Parkinson’s who is facing a future where leaving the house will be difficult. How do you take care of things like food shopping?

So far, my family has been helping me, so I live a quite privileged life where I don't have to worry about shopping, preparing food, doing chores, etc. However, in coming years, that situation is going to change, and when they are no longer available to assist, I plan to move into an assisted living facility, where food preparation and chores can be done for me, as I'm unable to do any of these tasks myself. I had also investigated the option of buying a home and having paid assistants come in as needed, but for my particular situation, where I need short periods of help across an 18-hour span per day, it's not economically feasible to hire nearly round-the-clock help just for my sporadic needs for assistance; instead, I recognize that moving into a place where the assistants are already present and available for all residents is the way to go. My research to date has indicated a price range for assisted living in my region in the range of ~$4k-$6k per month, which is steep, but not beyond the realm of reason, as compared with skilled nursing facilities, the annual costs for which often run into the 6 figures...


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InquisitiveMind - your outlook on life is inspiring.
Thank you! :)


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Since I'm still coming to terms with my limitations, I struggle with creating meaning and enjoyment. Were there any philosophies or books that you can recommend that helped you to identify your abilities and plan an enjoyable life around them?

Yes! Personally, Ayn Rand's The Fountainhead and Atlas Shrugged have been the most meaningful books in my life; regardless of how difficult a physical struggle might be, those books have always inspired me to continue working to my maximum capabilities and to seek out others who also aspire to excellence. Keeping my mind focused on lofty goals has opened many doors to work on exciting projects with esteemed colleagues, which I don't think would have been within my realm of imagination had I not been in this aspirational mindset.

I will admit that I read those books as a teen, and at the time, I found them both inspirational as well as profoundly frustrating. The books are filled with heroic characters who all seem flawless, and the issue of disability and other sorts of challenges isn't addressed in Rand's works. I aspired to be like the heroes in those novels, but felt deeply lacking at an existential level.

I subsequently read Viktor Frankl's Man's Search for Meaning, which I would say rounded out my perspective. Frankl was a WWII concentration camp survivor who addressed the issue of finding meaning even in seemingly hopeless situations. He described the camp survivors who were able to maintain hope even in the face of brutal physical abuse, and I realized that I needed to stop feeling sorry for myself, and recognized that as a middle-class American, I had significant advantages that would enable me to succeed, given my willingness and effort.

Regarding identifying my abilities, I've just tried to keep an open mind and have been in the habit of learning a wide variety of skills; the availability of massive open online courses (MOOCs) has changed my life, allowing me to explore dozens of topics, and my participation in one of them actually established the connection that ultimately earned me my current job. Being open to new experiences and being an eager volunteer who is willing to fill in gaps in projects has taken me far, with many opportunities presenting themselves after I stepped up and was the proactive person who offered to take control of a task that needed doing. :)

Good luck with coming to terms with your limitations; the most difficult periods of my life involved being semi-disabled and trying to determine my proper place in the world. Regardless of the level of your disability now or in the future, understanding your own interests and talents, and filling your time with activities that you love doing and that you find valuable, will be essential in establishing the life you're seeking. :)
« Last Edit: September 30, 2017, 10:29:01 PM by InquisitiveMind »

Sun Hat

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Re: Chronic Illness and FIRE?
« Reply #32 on: October 01, 2017, 10:36:06 AM »
Thank you!

I know a number of people whom I consider heroic, as I used to work with extraordinary people. While they can seem flawless, the best of them were open about their struggles while carrying on. The hardest thing for me is comparing myself to them (they were able to continue working, I was not).

Today will be a good day to re-read Frankl (certainly one of the best books that I've ever read)!

InquisitiveMind

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Re: Chronic Illness and FIRE?
« Reply #33 on: October 01, 2017, 11:12:17 AM »
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I know a number of people whom I consider heroic, as I used to work with extraordinary people. While they can seem flawless, the best of them were open about their struggles while carrying on. The hardest thing for me is comparing myself to them (they were able to continue working, I was not).
I agree that comparing oneself against others is never a good strategy (I regularly remind myself of the advice that "comparison is the thief of joy"). My career trajectory is very modest compared with others my age who are superstars, but ultimately, it is about doing what you love to the best of your ability, and being satisfied with your choices. These are my consolations...


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Today will be a good day to re-read Frankl (certainly one of the best books that I've ever read)!
Cool, enjoy!