I'd like to talk about being on disability. It's forced poverty. I don't get enough to even pay my basic bills, especially considering my medical expenses. I try to hustle to make other money but I'm exhausted. And I know I'm one flare away from everything crashing down.
The disability system is terrible! I haven't ever qualified even though I do believe I should,but when I learned they wanted me to only have like $2,000 to my name, I knew it would an incredibly scary way to live. God bless you. I hope that things turn around and you feel better.
For those trying to get SSDI, do not give up hope. It took me 2 1/2 years, but I got approved. I had to go to court but it was all worth it. My advice to you is get a disability attorney. They only take a certain amount if you win your case. Otherwise you don’t pay. The other advice I have for you is to have a very strong medical record. Make sure you’re following your treatment plan and doing what your doctor wants you to do. Lastly, find a physician that supports you and disability or you probably won’t have much luck. If you have any questions about filling out paperwork, I am more than happy to help you fill it out.
There is also a limit of income you can make while receiving SSDI. Last year it was around $1090 per month of income you could make. But be very careful. If you start bringing in regular money, SS might start to question if you really are disabled or not. Then they try to get you to join the ticket to work program.
Having several chronic illness makes me feel like useless human sometimes. Not strong enough to work 8 hours of work, not passionate enough to complete many projects,etc. It is always challenge but we shouldn't give up, so yeah we should pool our ideas and resources together and help each other. Thank you for sharing and inviting others for this discussion.
Oh Gawd yes...please do a series about surviving financially while chronically ill. That is something I havent seen anyone else doing in the UA-cam space. (If anyone knows of someone who already is; then please do share)! Thanks!!❤❤❤❤❤❤
This is so relevant for me right now... I didn't start to get sick until my mid to late 20s, when I had already completed my bachelors and masters degrees and found a good job in my chosen field, and I had no plan in place for if I were to get sick. Over the course of 3 to 4 years, my life as I previously knew it disintegrated, and I've been on leave for six months now (I was very lucky that the job provided disability insurance) in an attempt to get myself able to work again. I'm having to re-evaluate my life and I'm realizing that I'm not sure that I can ever back to doing that job, and I may have to give up my career and (hopefully) find a job that I can do. For anyone reading this who is or has gone through something like this, all of the hugs! We're going to get through this
We definitely need more discussions on the financial plight of those of us with chronic conditions, especially “invisible illnesses”. I have a Eustachian tube disorder and vestibular migraine condition (both stemming from a viral infection, apparently) which affects my hearing, vision and balance. There’s always a baseline, but it’s made much worse by the use of computers and lights that flicker (such as fluorescents). If you were to see me on the street, you’d probably not think anything is wrong with me. People don’t understand why I’m exhausted after a few hours of computer work, but can ride a bike for a few hours with little problem. I’m of the impression that I have little hope of ever qualifying for disability, so I’m limited to working part time. I just wish I could find something apart from computer work that paid well.
I'm coming late to this thread, but i echo what many others have said. This is an essential discussion for the community. I've been immunocompromised for 41 years and have gone through all the stages: working, not working, working again, went back to school, working again, and finally being forced onto disability and retirement. Keep up the videos as you are able. T's and P's for all of us who struggle.
YES, YES, YES - I would love this series. Working OR being on disability was such a tough decision. I need to figure out what I can do to make money… just found your channel tonight. I’m excited to watch more vids.
This hits in so many ways. I’m financially strapped after having a medically mistake by a doctor that almost took my life. But in that blink of a moment my whole life was shattered. Lost my career and everything I had in order to even make it this far and now it’s getting worse and worse. I’ve tried to sell items that I make but haven’t found a good avenue for getting my things seen as most would be made to order and being sick and hooked to IV poles and feeding and drain tubes, visual loss to legal blind doesn’t get my out of house to even do craft fairs and things. How I spend every day fighting red tape, insurance and medical professionals to get what I need in an affordable way to stay alive. Especially fighting for life and being a single parent. It can be a lot and very daunting day in and day out.
IBD came on in my mid-forties. It was absolutely a difficult idea change. It interrupted my career and life path I had for myself. Working any job with a chronic illness is difficult.
I’m just starting to listen this. But this REALLY needs to be talked about more. The push/crash cycle has looked like… me building up my life and then watching it all slip away. Repeat. Very difficult.
Your idea for a new series is excellent. It would be so valuable for people living with chronic illness AND or a disability. I love your matter-of-fact manner. You go "girl"!
I just found your channel and what you said about nursing really hit me. I am an OR nurse and i really love it. I have a rare chronic disease that affects my energy level at work unfortunately. I am happy that i live in Sweden with universal healthcare and have regular contact with my neurologist and eye doctors. The last year I have been admitted to hospital, done MRI, lumbar punction, lots of blood work and numerous tests at eye department. I probably paid less than 200-300 dollars for all of my visits and medication. I feel so lucky that I live in a country with nationwide universal healthcare. I only work 80 procent now because of my illness and I do not do certain surgeries because of my illness. But on the other hand, I am able to have a better life outside of my job. Subscribed,
That’s great to have universal healthcare and to be able to still work as much as you can. Here it’s either disability (which is poverty) and that’s if you are lucky enough to get it, or you struggle to work and afford to live with insurance that fights to pay for nothing.
Hi Maggie, I hope you and Zak are doing well. I am 56 have been dealing with Crohn's since 1989 I had 4 surgeries I 1992 on botched bowel resection and was fairly lucky to have several years without pain. Another surgery in 2012. But in 2020 they did a total proctocolectomy and I have not been able to come back from this one. I have had to go on disability and Medicare doesn't start until April. My 12 year old son was diagnosed in July of last year of Crohn's, so anything dealing with finance would be wonderful. Thank you for what you do. When I first got my ostomy I was lost. The ostomy nurse I had in the hospital had really didn't know what she was doing, plus my surgery was during the pandemic so they really didn't spend time with you. What you do is truly appreciated. God Bless
I'm actually recovering from MECFS slowly and want to be a doctor. I'm going to drag myself through medical school even if it requires a wheelchair. But I agree that work is very difficult for most people with chronic illness and managing it is really hard. I'm pouring basically my entire life and resources into getting better and I know that I'm incredibly lucky because not everyone will experience the kind of remission that I'm experiencing.
Hey, doctor here hahahahaha I struggled my whole graduation years with MECFS, fybromyalgia and crohns disease (without knowing I had it), and only found out about my diagnosis when I got hospitalized (shortly after I graduated). It sucks, it's not easy, but it is possible. Get as many acommodations as you possibly can and have a support group, family and/or friends. UA-cam communities like these also help us feel less alone (i would sometimes feel crazy because everything seemed so easy to everyone around me, but hey, everyone around me were NOT fighting horrible disease symptoms all the time, so). Rock on 😻😻😻😻
Maggie, great suggestion for a video series. I have Crohn's. I was diagnosed at age 47 but had symptoms a long time beforehand. I worked for 32 years as an auditor. In 2010, I had surgery where a lot of my small intestine was removed as well as about .5 feet of my colon. Surgery was the best thing I could have done. I felt like I could work forever. I gradually had more fatigue, abdominal pain, and other symptoms. I was on Humira, then Entyvio. Lots of diarrhea. Thankfully, I worked in an office where my supervisors were not located. They had no idea how much time I was in the bathroom. In January 2018, I became eligible for taking retirement from my employer. I was so fatigued all the time and did not have the energy to carry my laptop, printer, etc, that I needed for our audits in the field. I needed to be near bathrooms while working in the field. It had become too much to handle, so I retired. I was 54 years old. I was not eligible for Social Security, so my income was cut to 60% of what I was earning while at work. My wife is also chronically ill. My income and my health insurance were very important to us as she is on Social Security Disability. Now it's 2023. My 60th birthday is this July. I'm still not eligible for regular Social Security for a few years. Inflation is going crazy, the house is not paid off, and credit card balances are maxed out. Medical expenses are killing us. My crohns is active, and I was hospitalized just before Christmas because of a blockage. I'm still waiting for that bill. I have applied for SSDI, but I expect to be denied and have to appeal it. My doctors both agree I should apply for it. To help with our cash flow now, we decided to apply for credit card debt relief. It will kill our credit rating, but the only other choice is bankruptcy. I hate doing this, but our medical expenses and inflation are killing us.
Took me several tries but I finally got SSDI with Crohn's. I'll be 53 this yr but I had hospital stays ever since I was 12. I was told having all of those in my background helped me qualify. But I hear ya! Fighting for disability is a nightmare. I hope things work out for you. Hang in there.
@Asher Rogers When I talked to my G.I. doctor about applying for SSDI, he told me that it makes sense to him because "your case is severe Crohn's. " I feel so good about having a specialist that is supporting this decision. I hired a firm (Allsup) to represent me in this process. I made that decision because, years ago, I prepared my wife's case for SSDI. She was diagnosed with multiple sclerosis. In my job, I prepared cases and represented the State of Utah in administrative law judge hearings. While I had never dealt with an SSDI case, I knew how to prepare and present a hearing. I also had the energy back then to handle it. This time, I am so physically fatigued I know I don't have the needed energy to handle it myself. Allsup is a disability representation firm. They charge 25% of the SSDI back payment, up to a max of $7,000.00., regardless of the number of appeals needed. There is no payment if I don't get awarded SSDI. I'm much less stressed out than with my wife's case.
I would also love to see more videos about the financial burden that chronic illness patients experience and what are the financial support options available, what kind of jobs, mostly jobs that can be done from home, are available for us. I have multiple chronic illnesses, the main ones being MS and CFS. Few years ago, when the extreme fatigue was too much, I was forced to quit my job as a research lab manager. Since then, I’m unemployed and on disability. My income doesn’t cover the bills, and my health is so unpredictable that I’m struggling to see how I could make money on the side or have a job in the future. I think it’s important to have discussions on that topic. Thanks for bringing it up and I’m looking forward for more videos on that, if you’re able to.
It’s great to hear how you were able to work on the same nursing unit after you were a patient there & you were able to help the kids with their ostomies! I’m sure they loved all the advice & assistance you could give them! I once worked w/ a fellow RN who had spina bifida (& could walk with braces or use w/c). She was so instrumental with our patients who had spina bifida - they really loved her & it was so cool to see them progress in their independence bc of her encouragement. It’s really encouraging to me when nurses are able to use their health challenges to help their patients! I’m sad you weren’t able to continue in that job, but I know you have helped many here, including me! I watch your videos whenever I have a patient with an ostomy & have questions, especially bc I don’t get those patients often. Thanks for all the ostomy education & for all that you do here!
Hey Maggie, yes 💯 a series of videos on this topic would be fantastic! I’m single, in my 50’s, work full time, live alone & unfortunately my parents and my only sister have all passed. If I don’t push thru the pain every day I will be homeless. I have severe diverticulosis which resulted in a colostomy last year. My supplies aren’t covered which sucks. I also have hyperthyroidism that I can’t treat and C3 squamous cell carcinoma vulvar cancer that I’m also not treating because I simply can’t take the kind of time off work required to address it. There are so many people out there like me who can’t do all the copayments, deductibles etc in addition to being absent from work. And I don’t think there are nearly enough resources for us. It would be so helpful to hear what ideas and experiences everyone has! I hope you end up doing this, thank you so much! ❤
I’m a nurse too and my fibromyalgia cut that short thankfully here in uk my health is free and thankfully I didn’t need to work as my kids are all adults but it did change our lifestyle
Maggie, you’ve been a life saver for me recently. I’ve been dealing some painful rectal/anal issues (have an appointment with doc tomorrow). I’ve been binge watching your videos, because it feels like having a friend who understands what you are going through. I am thankful that I have flexibility to work from home with my job while managing my health. I empathize with anyone dealing with chronic illness who must be in the workplace to do their job or must be on their feet moving all day, especially if they are dealing with severe rectal/anal pain. Thank you for everything Maggie, you are a blessing to so many ❤
Melinda, in 2006/2007 I had anal cancer. Today they no longer do surgery but just chemo and radiation. I had surgery as well and suffer from radiation colitis. I never know when problems will arrive when eating out! I intend to live my life and go out; however, I can’t work. I pray you stay strong! This is hard to deal with! My close friends know my condition and are wonderful!
I can't work at the moment. My bowel condition disabled me, the problems I have mean I cannot eat and I need nutritional drinks. I need an ileostomy but the surgeons are not doing anything. I have been deteriorating since 2015 and suffer excruciating chronic pain on a daily basis. I have lost my life and do not go out. I had to cancel an appointment today because of pain. I would like to have my surgery, hope all goes well, and get my life back.
Maggie, thank you for your videos please keep them up! I’m a lot older when I had my surgery. I was in my 40’s and it just seemed like all of a sudden I was having to go to the bathroom 10-15 times a day and actually sleeping with the toilet! Went to the doctor and they did everything scopes included! They told me I had “pan ulcerative colitis “. I was on every medicine known to man in 2010. Went into remission a couple of times but then it was not going to remission at all. So went to my surgeon and they scheduled me for a total colectomy with jpouch. That lasted for 6 months but I started getting infections one after another. So then it was discussed about the proctocolectomy. I agreed , it’s been 4 years with the bag I’m so grearful! But it is hard to work sometimes , thank goodness it’s a 8-5 job and I sit most of the time. I am unable to lift heavy things but got laid off on 1/3/2023. Maybe I should work remotely?? Again thank you for your video’s LOVE THEM!!!!
I very much appreciated your video as an older adult who had their career unexpectedly sidelined by chronic illness. My mistake was not to listen to my body as I was getting sicker which wound up making the illness much worse and also spiraling off to create other health issues. The one thing I did do right was to start putting aside some savings as my illness progressed and before I finally had to stop working. I am burning through those funds quickly with all of my medical bills but at least it gave me a bit of a buffer as I come to grips with my new financial reality. Thank you for sharing and being so positive. It helps all of us immensely! 💙
I would love to hear about it. Most jobs you have to be able to lift over 35 lbs and I am not able to do that anymore plus you never know when your pouch may decide to leak.
Time and energy permitting, I think that series would help all of us. For me the focus I would be looking for is ways of earning money from home and handling insurance claims (especially those that get rejected for seemingly no logical reason).
@LetsTalkIBD: I am beginning to see that I'm not alone about needing advice on how to survive without a traditional income-- or maybe finding ways to get an income within the bounds that my health will allow. Thank you Maggie, I would love to watch a series on these subjects. I think that most people don't know even where to start. Hello from a new Subscriber in Colorado, USA, and a fellow Ostomate/Crohn's Disease survivor ~Peace!
I am 100% interested in this series. I was diagnosed with Crohn's when I was 24, I am 45 now. I currently work part time in a warehouse. I had to quit my retail mgmt job about a year & a half ago because it was so stressful. I know I will not be able to do physical labor type jobs for much longer because my health will not allow it. I have 3 kids to support, as a mom, I worry how I am going to be able to do this when inevitably I know my body is not going to allow me to for much longer.
I think what you've said is VERY valid. There was a time in my life where I was working just to cover my medical expenses, including health insurance and medications. Now that I'm on disability full time, I feel like it just let's me live my life as a sick person, focusing on getting the procedures I need to have some decent quality of life. I think it sucks, like why did I go to college/grad school to be successful?! Talk about frustrating!
@Stuff All I can do is wish you the best of luck and hope some peace and health is attainable for you. You're not alone in the battle for quality of life. Good luck to a fellow warrior!👊
Maggie, thank you for your videos. Yes, more videos on work/money as a patient would be great. As someone in college with Cerebral Palsy, I am trying to figure out how to do work that is meaningful after. Medicaid, my insurance provider here in North Carolina, makes this difficult with salary caps that are unreasonable for college educated individuals. Also, I was at an appointment today where I had to talk my doctor into looking deeper at an issue and it worked, but I was instantly reminded of what you said in a recent video about patients really having to stand up for what they feel is happening to their bodies. Thank you for what you do on this channel.
It would be great to hear about this topic I studied To get my bachelors in nursing. I then got sick and couldn’t work as a nurse, but went back to school. Got another degree and began a great career in Pharma. It was a dream job. I loved what I was doing, and actually always worked on teams in Pharma who dealt with biologics and IBD. This allowed me to be totally open about my illness and they were always unbelievably understanding. I could be presenting to 100 people , and if I had to run out mid sentence to the washroom, I could come back, pickup where I left off and it was no problem. The issue now is that after over 15 abdominal surgeries, I now have intestinal failure, and am on TPN 14 hours a day 7 days a week. My job involved 50%travel. Which is just too hard with TPN. I miss my work soooo much. I loved my job. It is probably my biggest loss from becoming so ill
We all have our own stories but I believe it's important to open that box. Not working for an employer does provide some flexibility a boss will rarely give. You still have deadlines that don't always line up with your health. Streamlining commitments and allowing wiggle room to offer a bit more can help. People take no matter what you feel like. Saying no is a master skill set. Being on your own, it's financially hard to do.
Yes, the commitments are hard because they are extremely unpredictable. Most jobs just assume you aren't making the effort to commit and it's unexcusable. I can barely make it to Dr. appts. & those are extremely important. But when you're hurting and sick ......I mean You Are Sick! Not much you can do.
Yes! videos like these would be so helpful. Being diagnosed so young and having things come up I quickly realized I could not work a normal job. Its always a struggle with medical + finances
Big YES to more on this topic, and thank you for sharing your experience. It was validating to hear that nausea and constant bathroom trips were work issues for you. Those have definitely been big ones for me. I wish I could magically give all the doubting and minimizing doctors and bosses the experience of how such common symptoms can destroy your life. I wouldn't make them feel it forever, just long enough to have the desperation and fear about how they'll support themselves etched on their souls. 😈
I would absolutely 100% love a video on financial stuff that you mentioned! I was literally just talking to my sister about this. My husband had no more leave or sick time (because I was always needing him to rush home from work because I was always sick) so when I had to have my first surgery (after 30 days of being hospitalized and he had to stay home with our child to take care of him) he had to be on FMLA a total of 18-ish weeks that year between my two surgeries and me being hospitalized. So to say finances have been a major struggle is defiantly relevant over here 🙋🏻♀️ I’ve wondered about starting a channel myself but worry about all the things that come along with it and if I could do it’s and I know it takes time and lots of patience for it to grow to where it’s actually profitable. Would peipel like what I have to say ? Could I deal with the negativity ? Would it add even more stress to my life ? Yeah …
this is great idea Maggie :) i would love to hear more about managing finances when sick. I have this blessing of working remotely, so whenever i feel bad i can just take laptop to my bed and it helps a lot.
Yup especially since a symptom of many chronic illnesses is chronic fatigue because your body is working harder under the surface. Having multiple chronic illnesses leaves you having a smaller energy level to begin with each day even if it's not visible. I want to work, care for my kid, keep my house immaculate, and keep a healthy social life. But, keeping all those expectations are hard to do in a healthy body let alone if you are 'sick'. I wish there was more education in the general public cus it's not laziness or apathy to better our lives. If I do everything I want to do in a single day, I'm going to struggle the next few days after no matter what I do to ease the burden on my body.
I feel like this came at the perfect time. I'm working part-time retail with a disability. It doesn't impact the type of work, but it limits me from certain tasks that aren't deal breakers, but would make me more "valuable." This time of year is notoriously slow anyway, and they've cut hours so drastically it's shocking. With most of the hours going to "full-timers (who have them guaranteed) and people who can do the register" which I can't, and half of our already small staff not even on the schedule, I would love to find a way to supplement, at least temporarily without having to take another job. I tried doing 2 jobs before and it was too much. My only other options are to get promoted, which I'm not qualified for, or quit, but I have the most amazing managers I've ever had (this is a directive from corporate, and management is distraught over it), and I'm not willing to give that up. They're saying it should only last a few weeks, but it's worse than I was expecting.
Yes Maggie...please talk about finances! 😌 I'm a 56 yr old woman, had my stoma remade last March after 20 yrs of having a Jpouch from UC. Was married (now divorced) have adult children and live contentedly alone. Have other health issues (back, neck) that yrs ago required me to be on federal and provincial disability after being a hair stylist since I was 18. Now my ostomy is permanent so my provincial disability went up (kinda like insurance but we get it paid to us) to pay for supplies including extra groceries which now have to eat more just to maintain healthy weight or else will be sick again, have high output and short bowel syndrome Anyway, ya, for any Canadians reading this, there are some loop holes getting extra but still, I'm not living it up or anything like that....barely make my rent, get groceries pay normal bills but can't have any extras like I was used to...have buy used clothing and depend on my friends and family who graciously help me out. So yes....let's talk about this on here! LOVE you, your story, one of my daughters are your age, and was just " showing you off" yesterday when she came over...she's my hair stylist now haha...SO grateful for this day and age where we can turn to the internet for guidance, hope and encouragement...20 yrs ago when I had my original surgery, a bag, then take down, didn't have all this so this time, even though it's permanent, my confidance and positivity levels are much higher. Been wanting to reach out since I 'met' you on here so "HI"🙂. Totally get everything you're saying about not being able to work and our issues. Going to be looking into making a little extra $ by doing DIY and selling on Marketplace or Etsy since all who know me are pushing me to make, then sell because they know what I can do and it has to be something I can do at my own pace...nauseousness, pain...you know it comes and goes so when I'm feeling good...full steam ahead! Get er done!! Thankyou for bringing this up and keep up the good work! You're awesome, a pleasure to listen to and beautiful! Hope this message isn't too long but wanted to let you know me and my story. Have a great week!
I needed this video so much. I feel like I’m going crazy trying to live a normal life. The unpredictability of symptoms and scheduling doctor’s appointments and surgeries, on top of everything else… making it all make sense is so hard. People don’t get it. Even people with their own health problems don’t always relate. It can be different from case to case but it makes you feel so alone. Thank you for making this video.
I was an RN and I have endometriosis. I pushed through many shifts being in severe pain and bleeding heavily. Maybe TMI but I would just put in a tampon and use an overnight pad (maybe even stack multiple pads) so I could get through without bleeding through my clothes. I’d be handing out medications and (TMI WARNING) a massive blood clot would push my tampon out. I ended up having a right hemi colectomy because the endo got into my colon. My boss harassed me via phone until I came back to work. I was out for 6 weeks on short term disability. A couple months later my dad went on hospice and I had no options for taking time off so I just quit on the spot and never looked back. Now I work for the state processing Medicaid and food stamps. Huge pay cut but the benefits are good and I can take time off when I need it. I can also work from home if I need to. Luckily I am doing much better now that I’m on medication to stop my periods entirely.
I'd be interested in hearing more about the topics you mentioned, especially medical insurance. Thanks for taking the time to share your journey with us.
I was diagnosed with mild/moderate Crohn’s in November 2020. The pandemic was in full swing and I had been working my paralegal job remotely most of the year. My first symptom was rectal bleeding. At first it was relatively easy to work and go to medical appointments. My illness progressively got worse and didn’t respond to any of the medication that was prescribed. Over a six month period of time I lost 86 pounds due to malnutrition and lost a lot of muscle/strength. It got harder to work as I was weak, tired, had infusion appointments and frequent MD appointments/procedures. Three years later I now have moderate/severe Crohn’s, am classified as a complicated patient, have parastomal Pyoderma Gangrenosum, a large (thankfully not painful) parastomal hernia and a colovesical fistula from my bowel to my bladder. I have been hospitalized 6-7 times, have a loop ileostomy (to allow the inflammation in my bowel to reduce and decrease fecal matter from entering my bladder), am working part time and using sabbatical time to hopefully get me to a late summer surgery and recovery from a bowel resection to remove the fistula, repair any bladder damage, reposition my stoma, fix the hernia and possibly remove my uterus and ovaries if they are involved with the adhesions/scar tissue created by the fistula. There may be other complications or hopefully fewer, but they won’t know for certain until the surgery. I hope that I have enough time to make it through recovery and that once recovered can return to normal work schedule again even if I continue to work from home due to immunodeficiency. If not, I will see if I qualify for the long term disability insurance as I will probably lose my job..,😢
Great idea! I've spent 20 year's navigating working with my chronic illnesses (mostly part time) until now where sadly it is impossible & in my country I am my husband's problem now... It's's hard for him to earn money as he's my full-time carer.... So a very pertinent subject matter for sure Maggie. Thanks for starting to tackle it ❤ Love, Nicole from New Zealand
There's a huge variation in chronical illnesses. Both between the illnesses themselves - and also the severity of even the same illness. And what your job is. It is easier to continue some than others. And then between societies and how they take care of you.
I'm the father of a child (now 20 years old) that was born with profound disabilities and diagnosed failure to thrive. Early in this video you stated "you're sick...what do you do?". That was an eye opener for me as continuously contemplate how to articulate my family's position in life (relative to normal life): financially, and having another child (sibling) to raise along side. You can say that I struggle to understand how I'm going provide for all things. Struggling to understand how I will be able to remain employed, and employable, is also always top of mind. The comment "you're sick...what do you do" provided me with suck clarity of mind relative to better understanding my family's position in life. I wish I would have said to my wife, 21 years ago, that our disabled child is if one of us (her parents) has just been diagnosed with a chronic illness. I wish we would have approached "life", from a strategic standpoint, as if one of us were living with a chronic illness and yet still had to balance all of the responsibilities that come with life in general. Instead, we operated according to our preconceived notions about "normal" life, changing very little (if any) of our long term expectations and simply "ADDED" the disabled child to the overall profile. What's also interesting to me is that I have lived with a diagnosis of Multiple Sclerosis for the last 29 years, and have recently received a diagnosis of Celiac. To best of my knowledge, I believe that the initial presentation of symptoms for Celiac started 11-12 years ago with weight loss (which I simply attributed to stress). As of this writing I realize that I still view our adult disabled child as the long pole in our family tent in terms of illness, and none of my own. I am more mindful as of the (9) months that my wife and I need to understand what our true "life" picture is, and determine a strategy of what it needs to be; one that is built on being realistic and being brutally honest with ourselves about who (and what) we truly are. Apologies for sounding somewhat negative in that last sentence, but I have learned that truth, and accepting truth, is the foundation for positive growth in all areas of life. Blessing to all who have commented, some of your comments are soul crushing. Thank you, Maggie, for the work that you do (in life) in making these videos. You have been a blessing to me this morning as I just encountered your channel for the very first time, today. You are "the real deal" as they say.
I just found your channel as I was searching for inspiration to do with topics that align with my channel which is about my own chronic illness journey but also is meant to serve as a resource for others. I'm sorry that you've had this experience, I have worked all throughout my illness even right after going into heart failure - it's not easy on either side. Well, I'm off to see what you're up to on here now and you've gained a new sub!
Loved this video, thanks for talking about a difficult topics. I live with Lyme/MECFS and Mental illness and I haven't been able to work in like 10 years, since I was in my early/mid 20's. I have done a crap ton of part-time online graduate school in order to keep myself afloat financially with student loans. Over the last year and half I've had slightly better health. Now I'm in a full-time graduate program to become a counselor. My thinking is that I can do that work part-time and probably support myself, plus make my own schedule. But it does mean I'll have to go into private practice most likely, as counseling agencies and community mental health places usually only hire full-time counselors. But at least I've got more options than I've had before!
I'm new to this channel, but not new to Crohns and plaque psoriasis. I'm now 52 and I'm struggling every day. Sometimes every second of every minute. I would love to see more on this topic. Thanks, young lady!
Thank you for this, just watched it and as I am about to start a new job as a counselor, taking courses online has been relatively easy, but I am hesitant as I consider starting work. Thank you for the reminder to honour my limitations! 💕
Absolutely! Might I suggest talking about how inflation has impacted people with chronic health issues. I myself have to eat a gluten free diet. Gluten free foods have always been more expensive than the stuff with gluten. Lately though, it has gotten much worse. I know there are other people who also have to be on special diets like diabetics and people that are on chemo or radiation. From what I’ve seen lately, people that I’ve spoken to have become shell shocked at the cost of food. I feel like people who are recently diagnosed with various illnesses and diseases are kind of being blindsided by inflation.
This video sure reminds me how lucky I am to live in the Netherlands. I am unable to work at all due to my health and live off of our version of disability (Wajong). I have good health insurance and I am fine financially, despite having been to college and not having paid any of that off. Of course there are some things outside of my means I would like, but I think that's pretty universal. Things aren't perfect, sometimes it takes a lot of time and energy to work the systems, but overall I am okay.
Would love a video on making/saving money. I’m a stage 4 rectal cancer patient who is no longer able to work in the rehab world. Side effects from surgeries, radiation make working a scheduled job and being productive very unrealistic. Ostomy reversal has been a nightmare. Any great ideas would help us out ❤
I just found your channel and I've been binge watching. Such great content!! I am VERY interested in watching your upcoming videos about working with chronic illness. :) I'm an occupational therapist, a health writer and a small business owner. I sadly had to leave clinical practice & close my business because of chronic illnesses. Then last year (with long covid), after an entire life of GI symptoms & no answers from the medical community, I was finally diagnosed with Crohn's Disease during the worst flare of my life. I lost 30+ lbs. in 7 months plus I have muscle atrophy & weakness of course. And it goes on. Wishing you well! Jeanne
Girl thank you so much for this, I would love any advice you have to give. I just wanted to add,etsy is so amazing! If you have a talent to make something, you can usually find someone who would want to buy it.(If you have internet access) The same thing goes for selling on amazon or ebay. Take care!
Hi Maggie...Always interesting to hear your story...I too am a nurse and work 12hr shifts and prefer nights for same reasons as you...I've been working full time for 40 years with Crohns and have a few more to go to get to retirement...I worked through many shifts in so much pain due to strictures, I'd have to go lie on the bathroom floor to not pass out...then when the flood gates opened then many hours in Bathroom for that...since my resection surgery I've been doing better...more energy because I can eat again...Everyone's case is different...I consider myself lucky to have been able to work but I would have preferred to have been more healthy...Shift work and 12 hour shifts are extremely difficult as you know...I like my job but I am ready to retire.
I'm SUPER interested in hearing any and all tips on managing finances. I had to quit high paying jobs and now I'm even struggling to do a 9-6 customer service job.. the flexibility is NOT something employers understand, and it's not enough money to live off of anyway.
Thank you. I am a veterinarian, and I am a single income household. I am feeding tube dependent with many chronic conditions. I have been looking at FMLA or disability and these ideas scare me.
Veterinarian with a complex medically disabled food pump dependent adult child. I have RA myself. Still manage to do vaccination clinics at night and wellness centers on weekends. Relief vets can make a decent money and with chronic illness less stress is helpful.
I could of made this video myself. I had to leave bedside nursing due to illness. Please please please take off with this topic, I would love 5:42 to watch a series on jobs.
Im a school psychologist, so I work in a school. I was recently diagnosed with Hodgkin's Lymphoma at 26. I'm so thankful that my district will work with me and I don't need a sub, but missing a day (or two) every other week for chemo and half a day on the other week for bloodwork is rough.
I could of made this video myself. I had to leave bedside nursing due to illness. Please please please take off with this topic, I would love to watch a series on jobs.
Your videos are a blessing. Yes I would be interested in patient advocacy helping people while generating multiple streams of income. I have ulcerative Colitis and had My surgery at age 60 in 2019. I have a pension and social security but could use the extra money.
I’m sort of freaking out here. I searched for DIL videos and found you. You showed in your video a camera pan of the Phila zoo and pulling into UPenn and realized we are local local to each other. When you started talking about CHOP??! I almost fell over. I spent 8 days there w/ my then 7 y/o in full DKA and a T1D dx. His nurse? T1D. So, the more I watch, the more we have in common 😱 you’re so endearing I have a feeling I’m going to be binging your videos today!
I'm not sure when you were there, but I worked on that floor at CHOP :) I mainly talk about my GI experience, but so fortunate to work on 5S/5WB with diabetics too! I was there from 2016-2019! At the time we had a few T1D nurses, all so lovely to work with and really kind people. I learned so much from them!!
We have totally different illnesses I have an ileostomy because of colorectal cancer and hereditary 🧬 called FAP but I do got you been helpful and if it wasn't for the wonderful survivors on UA-cam I would have given up. Thanks and stay blessed 💕
Hi. If you talked about finances for disabled people I would totally watch and share. Almost everyone in my life has some kind of chronic illness: from daily migraines, chronic pancreatitis, chronic pain, low vision, and autism etc. I personally have gone through waves. I have Bipolar, Chronic Fatigue, Pre-Diabeties, Anemia, and in the past I have had extreme chronic pain and intense GERD. I have had to shift my jobs around a lot. In the last 4 years especially I would quit a lot of jobs and work a lot of part-time cafe jobs that I could easily leave if I needed to rest. I'm actually currently on a short leave from work because of my health. I currently work a mostly remote 9-5 desk job because I have almost no strength. I return in another week. Anyway I would be very interested in your thoughts.
Yes! I am definitely interested in learning about ways otherw work with something like Crohn’s Disease. I’d be interested in hearing your view and how you incorporate ways to make $$ when living with an unpredictable disorder.
I ignored my illness which I've had since I was nineteen. Every 4 to 5 years I would have a major crash and was off work for months. I would go back to work not fully recovered just pushing my way through. The trouble was every time I had a major crash it was worse than the last one. When I reached age 47 I had my worst crash which made me paralysed in my legs and what would have seemed like a stroke at the time. What started as Glandular Fever at nineteenth, turned into ME/CFS, then a vestibular disorder, Crohn's disease and finally a rare form of thyroid cancer. As much as I would love to have a career again and tried to, my illness has forced me into early retirement. I'm lucky because I had income protection insurance. It is nice to have but I still worry about meeting the requirements every month and how I would survive if I didn't have it since I am mostly bedbound now.
I work part-time for my neighbor. I am so fortunate if my bag leaks, I can come home shower and change, and they have no problems with it. I always return to work. I have even leaked with them there. I was mortified they were ok with it. She told me to go home she would clean up.
I'm on SSI. If I could find a non scam work from home job that could accommodate me, it would be amazing. Some days I just cannot work at all. Other days I could put in a few hours. I'm just not consistent enough and I need a lot of breaks. That all got me approved me for disability. It just sucks that my past work credits expired, so I'm on SSI which is below poverty. It's hard surviving.
I'm a LPN passed my NCLEX in 2012. The only chronic illness that effects my work is moderate social anxiety, which I struggle with because nursing is very social. Nursing for me was my second career, as I was laid off from my electronics job I had for over 16 years working in data communications as an electronic technician. I enjoy helping people but being around people is a huge stress for me, and I firmly believe it has caused uncontrolled hypertension I take a diuretic, beta blocker, ARB, calcium channel blocker and it's still high. I tried to find a job in nursing outside of direct patient care, but nobody wants a LPN. I have about 6 years of college and I don't want to go through any more school which is why I have not gone in for RN... Social anxiety has ruined my life, destroyed my chances of finding a wife or even a girl friend. I'm 54 will be 55 this year and I've never even kissed a girl. I say this not for sympathy but to help others understand how severe it is for me. For me to interact with patients is challenging and at times I feel like a deer in the headlights, which is why I chose to work in home care, because in home care I take care of only one patient for 42 hours a week three 14 hour shifts and my patient is a non verbal pediatric case so it makes it easier. Been through all kinds of therapy from talk therapy, prescription therapy even tried EMDR therapy which is used for PTSD, have not found anything that works... All therapy did was made me even more poor than I already am.
Hello! My name is Ruth Ann and I've had an ileostomy for 50 years. I will be 70 in just a few months. My bag is probably older than what you are used to but I change my bag every 7-10 days...unless I have that rare leak. I worked at an ice cream shop, I had a day care for 20 years, I was a nanny for 8 years, I had a cleaning business and was a caregiver for an elderly woman. Oh...I had my daughter when I was very sick with crohns, my son was born 2 years after I had my ileostomy. Unless I tell someone that I have an ileostomy, no one knows. My bag is never over my clothes. My stoma is so well placed. It is inside my panties, so under my jeans. I don't understand why so many people have such high stomas. I was asked before surgery where I wanted my bag to be... so I had that choice. I know this is a hodge podge of info but there is hope for those who worry about life after surgery. My husband is so awesome and never makes me feel that there is anything different about me. My hobbies are sewing and shooting handguns. I enjoy your videos. Keep up the good work!
As a midwife in the UK I had cancer at 4 yo and it affected a lot of my body following treatment. My realisation was when I was delivering a baby. I had my hand on the babies head, because once the head is visible you need to have your hand on it to control descent. This poor woman was pushing for 2 hours, yet I was the one silently crying due to the pain. My back and hips were so sore. I called the reg on call, hoping he would step in and use forceps. But he came in and said “give her another hour of pushing then call me back”. I really had to put my big girl pants on and (excuse the pun) push through. I had a hip replacement not long after!
I was diagnosed with Ulcerative Colitus over 3 years ago and I’m the primary income earner in my family. I struggle but so far have been able to work. Not saying it’s easy but I have a husband and kids to support.
I was raised to believe that if you are sick or in pain, you "pull yourself up by your bootstraps" and still go to work, school, or whatever else is required of you. Then, in my early 30s, I was diagnosed with ulcerative colitis and learned that I am also neurodivergent. I continue to push myself because I don't know or understand where these invisible "check points" exist: when is it appropriate to go part-time? When is it appropriate to ask for time off for extended flairs? Should I start looking into disability? Etc. I wish there were like health counseling or someone who could help guide me through this. I feel like I'm just going to keep pushing until I am either fired or wind up in the hospital because I don't know when to stop. I understand this can be different for everyone, but any guidelines would be helpful. If you continue this series, please try to include some information or resources on this. Thank you!
Very interested in this topic of coping with chronic illness and finances. Affording ostomy supplies is a big one too, and finding a reliable online supplier. Thank you for your videos!
I think this is a great topic, however, it's more something that feels specific to the US than it does chronic illness. It could really be a productive conversation maybe if it was a collaboration with other people globally with chronic illness. Systems work so differently in regard to health care and the way society views chronic illness and disability from country to country. It is tricky because regardless of what chrones looks like the symptoms and how it presents vary from person to person but not country to country.
I'd like to talk about being on disability. It's forced poverty. I don't get enough to even pay my basic bills, especially considering my medical expenses. I try to hustle to make other money but I'm exhausted. And I know I'm one flare away from everything crashing down.
The disability system is terrible! I haven't ever qualified even though I do believe I should,but when I learned they wanted me to only have like $2,000 to my name, I knew it would an incredibly scary way to live. God bless you. I hope that things turn around and you feel better.
I tried to get disability. Wasn’t approved.
For those trying to get SSDI, do not give up hope. It took me 2 1/2 years, but I got approved. I had to go to court but it was all worth it. My advice to you is get a disability attorney. They only take a certain amount if you win your case. Otherwise you don’t pay. The other advice I have for you is to have a very strong medical record. Make sure you’re following your treatment plan and doing what your doctor wants you to do. Lastly, find a physician that supports you and disability or you probably won’t have much luck. If you have any questions about filling out paperwork, I am more than happy to help you fill it out.
Elle, SSDI does not have an income limit. If you apply for SSI, yes, you need to have limited assets.
There is also a limit of income you can make while receiving SSDI. Last year it was around $1090 per month of income you could make. But be very careful. If you start bringing in regular money, SS might start to question if you really are disabled or not. Then they try to get you to join the ticket to work program.
Having several chronic illness makes me feel like useless human sometimes. Not strong enough to work 8 hours of work, not passionate enough to complete many projects,etc. It is always challenge but we shouldn't give up, so yeah we should pool our ideas and resources together and help each other. Thank you for sharing and inviting others for this discussion.
Never feel useless were all here for a reason much love!
💜 @@Phantomstories1831
Oh Gawd yes...please do a series about surviving financially while chronically ill. That is something I havent seen anyone else doing in the UA-cam space. (If anyone knows of someone who already is; then please do share)! Thanks!!❤❤❤❤❤❤
This is so relevant for me right now... I didn't start to get sick until my mid to late 20s, when I had already completed my bachelors and masters degrees and found a good job in my chosen field, and I had no plan in place for if I were to get sick. Over the course of 3 to 4 years, my life as I previously knew it disintegrated, and I've been on leave for six months now (I was very lucky that the job provided disability insurance) in an attempt to get myself able to work again. I'm having to re-evaluate my life and I'm realizing that I'm not sure that I can ever back to doing that job, and I may have to give up my career and (hopefully) find a job that I can do. For anyone reading this who is or has gone through something like this, all of the hugs! We're going to get through this
You're so right being a commercial pilot i got to fly with a major airline then in my 30's developed an autoimmune disease 😢😢😢😢😢.
You can do this! Good luck and keep fighting! ❤❤
We definitely need more discussions on the financial plight of those of us with chronic conditions, especially “invisible illnesses”. I have a Eustachian tube disorder and vestibular migraine condition (both stemming from a viral infection, apparently) which affects my hearing, vision and balance. There’s always a baseline, but it’s made much worse by the use of computers and lights that flicker (such as fluorescents). If you were to see me on the street, you’d probably not think anything is wrong with me. People don’t understand why I’m exhausted after a few hours of computer work, but can ride a bike for a few hours with little problem.
I’m of the impression that I have little hope of ever qualifying for disability, so I’m limited to working part time. I just wish I could find something apart from computer work that paid well.
I'd love to hear about that. Making ends meet while being chronically ill is soooooo hard! Thank you for talking about this
I'm coming late to this thread, but i echo what many others have said. This is an essential discussion for the community. I've been immunocompromised for 41 years and have gone through all the stages: working, not working, working again, went back to school, working again, and finally being forced onto disability and retirement.
Keep up the videos as you are able. T's and P's for all of us who struggle.
YES, YES, YES - I would love this series. Working OR being on disability was such a tough decision. I need to figure out what I can do to make money…
just found your channel tonight. I’m excited to watch more vids.
This hits in so many ways. I’m financially strapped after having a medically mistake by a doctor that almost took my life. But in that blink of a moment my whole life was shattered. Lost my career and everything I had in order to even make it this far and now it’s getting worse and worse.
I’ve tried to sell items that I make but haven’t found a good avenue for getting my things seen as most would be made to order and being sick and hooked to IV poles and feeding and drain tubes, visual loss to legal blind doesn’t get my out of house to even do craft fairs and things.
How I spend every day fighting red tape, insurance and medical professionals to get what I need in an affordable way to stay alive. Especially fighting for life and being a single parent.
It can be a lot and very daunting day in and day out.
Prayers for you
Was the doctor ever held accountable? The hospital?
I’m sorry
IBD came on in my mid-forties. It was absolutely a difficult idea change. It interrupted my career and life path I had for myself.
Working any job with a chronic illness is difficult.
I’m just starting to listen this. But this REALLY needs to be talked about more. The push/crash cycle has looked like… me building up my life and then watching it all slip away. Repeat. Very difficult.
Your idea for a new series is excellent. It would be so valuable for people living with chronic illness AND or a disability. I love your matter-of-fact manner. You go "girl"!
I just found your channel and what you said about nursing really hit me. I am an OR nurse and i really love it. I have a rare chronic disease that affects my energy level at work unfortunately. I am happy that i live in Sweden with universal healthcare and have regular contact with my neurologist and eye doctors. The last year I have been admitted to hospital, done MRI, lumbar punction, lots of blood work and numerous tests at eye department. I probably paid less than 200-300 dollars for all of my visits and medication. I feel so lucky that I live in a country with nationwide universal healthcare. I only work 80 procent now because of my illness and I do not do certain surgeries because of my illness. But on the other hand, I am able to have a better life outside of my job. Subscribed,
That’s great to have universal healthcare and to be able to still work as much as you can.
Here it’s either disability (which is poverty) and that’s if you are lucky enough to get it, or you struggle to work and afford to live with insurance that fights to pay for nothing.
Hi Maggie, I hope you and Zak are doing well. I am 56 have been dealing with Crohn's since 1989 I had 4 surgeries I 1992 on botched bowel resection and was fairly lucky to have several years without pain. Another surgery in 2012. But in 2020 they did a total proctocolectomy and I have not been able to come back from this one. I have had to go on disability and Medicare doesn't start until April. My 12 year old son was diagnosed in July of last year of Crohn's, so anything dealing with finance would be wonderful. Thank you for what you do. When I first got my ostomy I was lost. The ostomy nurse I had in the hospital had really didn't know what she was doing, plus my surgery was during the pandemic so they really didn't spend time with you. What you do is truly appreciated.
God Bless
I'm actually recovering from MECFS slowly and want to be a doctor. I'm going to drag myself through medical school even if it requires a wheelchair. But I agree that work is very difficult for most people with chronic illness and managing it is really hard. I'm pouring basically my entire life and resources into getting better and I know that I'm incredibly lucky because not everyone will experience the kind of remission that I'm experiencing.
What treatments have you tried, (if you don’t mind telling!)
Hey, doctor here hahahahaha I struggled my whole graduation years with MECFS, fybromyalgia and crohns disease (without knowing I had it), and only found out about my diagnosis when I got hospitalized (shortly after I graduated). It sucks, it's not easy, but it is possible. Get as many acommodations as you possibly can and have a support group, family and/or friends. UA-cam communities like these also help us feel less alone (i would sometimes feel crazy because everything seemed so easy to everyone around me, but hey, everyone around me were NOT fighting horrible disease symptoms all the time, so). Rock on 😻😻😻😻
Maggie, great suggestion for a video series. I have Crohn's. I was diagnosed at age 47 but had symptoms a long time beforehand. I worked for 32 years as an auditor. In 2010, I had surgery where a lot of my small intestine was removed as well as about .5 feet of my colon. Surgery was the best thing I could have done. I felt like I could work forever.
I gradually had more fatigue, abdominal pain, and other symptoms. I was on Humira, then Entyvio. Lots of diarrhea. Thankfully, I worked in an office where my supervisors were not located. They had no idea how much time I was in the bathroom.
In January 2018, I became eligible for taking retirement from my employer. I was so fatigued all the time and did not have the energy to carry my laptop, printer, etc, that I needed for our audits in the field. I needed to be near bathrooms while working in the field. It had become too much to handle, so I retired. I was 54 years old. I was not eligible for Social Security, so my income was cut to 60% of what I was earning while at work.
My wife is also chronically ill. My income and my health insurance were very important to us as she is on Social Security Disability.
Now it's 2023. My 60th birthday is this July. I'm still not eligible for regular Social Security for a few years. Inflation is going crazy, the house is not paid off, and credit card balances are maxed out. Medical expenses are killing us. My crohns is active, and I was hospitalized just before Christmas because of a blockage. I'm still waiting for that bill. I have applied for SSDI, but I expect to be denied and have to appeal it. My doctors both agree I should apply for it. To help with our cash flow now, we decided to apply for credit card debt relief. It will kill our credit rating, but the only other choice is bankruptcy. I hate doing this, but our medical expenses and inflation are killing us.
Took me several tries but I finally got SSDI with Crohn's. I'll be 53 this yr but I had hospital stays ever since I was 12. I was told having all of those in my background helped me qualify. But I hear ya! Fighting for disability is a nightmare. I hope things work out for you. Hang in there.
@Asher Rogers When I talked to my G.I. doctor about applying for SSDI, he told me that it makes sense to him because "your case is severe Crohn's. " I feel so good about having a specialist that is supporting this decision. I hired a firm (Allsup) to represent me in this process. I made that decision because, years ago, I prepared my wife's case for SSDI. She was diagnosed with multiple sclerosis. In my job, I prepared cases and represented the State of Utah in administrative law judge hearings. While I had never dealt with an SSDI case, I knew how to prepare and present a hearing. I also had the energy back then to handle it. This time, I am so physically fatigued I know I don't have the needed energy to handle it myself. Allsup is a disability representation firm. They charge 25% of the SSDI back payment, up to a max of $7,000.00., regardless of the number of appeals needed. There is no payment if I don't get awarded SSDI. I'm much less stressed out than with my wife's case.
I would also love to see more videos about the financial burden that chronic illness patients experience and what are the financial support options available, what kind of jobs, mostly jobs that can be done from home, are available for us.
I have multiple chronic illnesses, the main ones being MS and CFS. Few years ago, when the extreme fatigue was too much, I was forced to quit my job as a research lab manager. Since then, I’m unemployed and on disability. My income doesn’t cover the bills, and my health is so unpredictable that I’m struggling to see how I could make money on the side or have a job in the future.
I think it’s important to have discussions on that topic. Thanks for bringing it up and I’m looking forward for more videos on that, if you’re able to.
It’s great to hear how you were able to work on the same nursing unit after you were a patient there & you were able to help the kids with their ostomies! I’m sure they loved all the advice & assistance you could give them! I once worked w/ a fellow RN who had spina bifida (& could walk with braces or use w/c). She was so instrumental with our patients who had spina bifida - they really loved her & it was so cool to see them progress in their independence bc of her encouragement. It’s really encouraging to me when nurses are able to use their health challenges to help their patients! I’m sad you weren’t able to continue in that job, but I know you have helped many here, including me! I watch your videos whenever I have a patient with an ostomy & have questions, especially bc I don’t get those patients often. Thanks for all the ostomy education & for all that you do here!
Hey Maggie, yes 💯 a series of videos on this topic would be fantastic! I’m single, in my 50’s, work full time, live alone & unfortunately my parents and my only sister have all passed. If I don’t push thru the pain every day I will be homeless. I have severe diverticulosis which resulted in a colostomy last year. My supplies aren’t covered which sucks. I also have hyperthyroidism that I can’t treat and C3 squamous cell carcinoma vulvar cancer that I’m also not treating because I simply can’t take the kind of time off work required to address it. There are so many people out there like me who can’t do all the copayments, deductibles etc in addition to being absent from work. And I don’t think there are nearly enough resources for us. It would be so helpful to hear what ideas and experiences everyone has! I hope you end up doing this, thank you so much! ❤
How are you doing these gays? Are you finding help with paying for your medical needs?
I’m a nurse too and my fibromyalgia cut that short thankfully here in uk my health is free and thankfully I didn’t need to work as my kids are all adults but it did change our lifestyle
You're lucky to live in a civilized country here we deal with savage capitalism and corrupt legislators getting kickbacks from big pharma
Maggie, you’ve been a life saver for me recently. I’ve been dealing some painful rectal/anal issues (have an appointment with doc tomorrow). I’ve been binge watching your videos, because it feels like having a friend who understands what you are going through. I am thankful that I have flexibility to work from home with my job while managing my health. I empathize with anyone dealing with chronic illness who must be in the workplace to do their job or must be on their feet moving all day, especially if they are dealing with severe rectal/anal pain. Thank you for everything Maggie, you are a blessing to so many ❤
Wishing you the best with your appointment. Hope they can provide some answers and plan. Take care
🙏🏻💗
Melinda, in 2006/2007 I had anal cancer. Today they no longer do surgery but just chemo and radiation. I had surgery as well and suffer from radiation colitis. I never know when problems will arrive when eating out! I intend to live my life and go out; however, I can’t work. I pray you stay strong! This is hard to deal with! My close friends know my condition and are wonderful!
I can't work at the moment. My bowel condition disabled me, the problems I have mean I cannot eat and I need nutritional drinks. I need an ileostomy but the surgeons are not doing anything. I have been deteriorating since 2015 and suffer excruciating chronic pain on a daily basis. I have lost my life and do not go out. I had to cancel an appointment today because of pain. I would like to have my surgery, hope all goes well, and get my life back.
Maggie, thank you for your videos please keep them up! I’m a lot older when I had my surgery. I was in my 40’s and it just seemed like all of a sudden I was having to go to the bathroom 10-15 times a day and actually sleeping with the toilet! Went to the doctor and they did everything scopes included! They told me I had “pan ulcerative colitis “. I was on every medicine known to man in 2010. Went into remission a couple of times but then it was not going to remission at all. So went to my surgeon and they scheduled me for a total colectomy with jpouch. That lasted for 6 months but I started getting infections one after another. So then it was discussed about the proctocolectomy. I agreed , it’s been 4 years with the bag I’m so grearful! But it is hard to work sometimes , thank goodness it’s a 8-5 job and I sit most of the time. I am unable to lift heavy things but got laid off on 1/3/2023. Maybe I should work remotely?? Again thank you for your video’s LOVE THEM!!!!
I very much appreciated your video as an older adult who had their career unexpectedly sidelined by chronic illness. My mistake was not to listen to my body as I was getting sicker which wound up making the illness much worse and also spiraling off to create other health issues. The one thing I did do right was to start putting aside some savings as my illness progressed and before I finally had to stop working. I am burning through those funds quickly with all of my medical bills but at least it gave me a bit of a buffer as I come to grips with my new financial reality. Thank you for sharing and being so positive. It helps all of us immensely! 💙
I would love to hear about it. Most jobs you have to be able to lift over 35 lbs and I am not able to do that anymore plus you never know when your pouch may decide to leak.
Time and energy permitting, I think that series would help all of us. For me the focus I would be looking for is ways of earning money from home and handling insurance claims (especially those that get rejected for seemingly no logical reason).
@LetsTalkIBD:
I am beginning to see that I'm not alone about needing advice on how to survive without a traditional income-- or maybe finding ways to get an income within the bounds that my health will allow. Thank you Maggie, I would love to watch a series on these subjects. I think that most people don't know even where to start. Hello from a new Subscriber in Colorado, USA, and a fellow Ostomate/Crohn's Disease survivor ~Peace!
I am 100% interested in this series. I was diagnosed with Crohn's when I was 24, I am 45 now. I currently work part time in a warehouse. I had to quit my retail mgmt job about a year & a half ago because it was so stressful. I know I will not be able to do physical labor type jobs for much longer because my health will not allow it. I have 3 kids to support, as a mom, I worry how I am going to be able to do this when inevitably I know my body is not going to allow me to for much longer.
I think what you've said is VERY valid. There was a time in my life where I was working just to cover my medical expenses, including health insurance and medications. Now that I'm on disability full time, I feel like it just let's me live my life as a sick person, focusing on getting the procedures I need to have some decent quality of life. I think it sucks, like why did I go to college/grad school to be successful?! Talk about frustrating!
I’m in the same boat.
@Stuff All I can do is wish you the best of luck and hope some peace and health is attainable for you. You're not alone in the battle for quality of life. Good luck to a fellow warrior!👊
@@alli_went_bonkers ❤️❤️❤️🙏🏻 thank you so much
@@stuff1784 You got this! 💜
Yesss! Please share more about this topic. It eats away at me constantly!!
Maggie, thank you for your videos. Yes, more videos on work/money as a patient would be great. As someone in college with Cerebral Palsy, I am trying to figure out how to do work that is meaningful after. Medicaid, my insurance provider here in North Carolina, makes this difficult with salary caps that are unreasonable for college educated individuals. Also, I was at an appointment today where I had to talk my doctor into looking deeper at an issue and it worked, but I was instantly reminded of what you said in a recent video about patients really having to stand up for what they feel is happening to their bodies. Thank you for what you do on this channel.
A much needed conversation as working with chronic pain/illness is A LOT!!!
Yes I'd be interested. I work full time with several auto immune diseases & its hard most days
yes, that makes a lot of sense to talk about. I like your idea of talking about finances as a chronically ill person.
It would be great to hear about this topic
I studied To get my bachelors in nursing. I then got sick and couldn’t work as a nurse, but went back to school. Got another degree and began a great career in Pharma. It was a dream job. I loved what I was doing, and actually always worked on teams in Pharma who dealt with biologics and IBD. This allowed me to be totally open about my illness and they were always unbelievably understanding. I could be presenting to 100 people , and if I had to run out mid sentence to the washroom, I could come back, pickup where I left off and it was no problem. The issue now is that after over 15 abdominal surgeries, I now have intestinal failure, and am on TPN 14 hours a day 7 days a week. My job involved 50%travel. Which is just too hard with TPN. I miss my work soooo much. I loved my job. It is probably my biggest loss from becoming so ill
We all have our own stories but I believe it's important to open that box.
Not working for an employer does provide some flexibility a boss will rarely give.
You still have deadlines that don't always line up with your health.
Streamlining commitments and allowing wiggle room to offer a bit more can help.
People take no matter what you feel like.
Saying no is a master skill set.
Being on your own, it's financially hard to do.
Yes, the commitments are hard because they are extremely unpredictable. Most jobs just assume you aren't making the effort to commit and it's unexcusable. I can barely make it to Dr. appts. & those are extremely important. But when you're hurting and sick ......I mean You Are Sick! Not much you can do.
Yes! videos like these would be so helpful. Being diagnosed so young and having things come up I quickly realized I could not work a normal job. Its always a struggle with medical + finances
Big YES to more on this topic, and thank you for sharing your experience. It was validating to hear that nausea and constant bathroom trips were work issues for you. Those have definitely been big ones for me. I wish I could magically give all the doubting and minimizing doctors and bosses the experience of how such common symptoms can destroy your life. I wouldn't make them feel it forever, just long enough to have the desperation and fear about how they'll support themselves etched on their souls. 😈
I would absolutely 100% love a video on financial stuff that you mentioned! I was literally just talking to my sister about this. My husband had no more leave or sick time (because I was always needing him to rush home from work because I was always sick) so when I had to have my first surgery (after 30 days of being hospitalized and he had to stay home with our child to take care of him) he had to be on FMLA a total of 18-ish weeks that year between my two surgeries and me being hospitalized. So to say finances have been a major struggle is defiantly relevant over here 🙋🏻♀️ I’ve wondered about starting a channel myself but worry about all the things that come along with it and if I could do it’s and I know it takes time and lots of patience for it to grow to where it’s actually profitable. Would peipel like what I have to say ? Could I deal with the negativity ? Would it add even more stress to my life ? Yeah …
Yes more about this topic please 🙏
this is great idea Maggie :) i would love to hear more about managing finances when sick.
I have this blessing of working remotely, so whenever i feel bad i can just take laptop to my bed and it helps a lot.
Yup especially since a symptom of many chronic illnesses is chronic fatigue because your body is working harder under the surface. Having multiple chronic illnesses leaves you having a smaller energy level to begin with each day even if it's not visible. I want to work, care for my kid, keep my house immaculate, and keep a healthy social life. But, keeping all those expectations are hard to do in a healthy body let alone if you are 'sick'. I wish there was more education in the general public cus it's not laziness or apathy to better our lives. If I do everything I want to do in a single day, I'm going to struggle the next few days after no matter what I do to ease the burden on my body.
Howdy Maggie, hope you both are doing great, Keep smiling, I just reached my two years with an Ileostomy. Your videos have really helped, thanks.
I feel like this came at the perfect time. I'm working part-time retail with a disability. It doesn't impact the type of work, but it limits me from certain tasks that aren't deal breakers, but would make me more "valuable." This time of year is notoriously slow anyway, and they've cut hours so drastically it's shocking. With most of the hours going to "full-timers (who have them guaranteed) and people who can do the register" which I can't, and half of our already small staff not even on the schedule, I would love to find a way to supplement, at least temporarily without having to take another job. I tried doing 2 jobs before and it was too much. My only other options are to get promoted, which I'm not qualified for, or quit, but I have the most amazing managers I've ever had (this is a directive from corporate, and management is distraught over it), and I'm not willing to give that up. They're saying it should only last a few weeks, but it's worse than I was expecting.
Yes Maggie...please talk about finances! 😌
I'm a 56 yr old woman, had my stoma remade last March after 20 yrs of having a Jpouch from UC. Was married (now divorced) have adult children and live contentedly alone. Have other health issues (back, neck) that yrs ago required me to be on federal and provincial disability after being a hair stylist since I was 18. Now my ostomy is permanent so my provincial disability went up (kinda like insurance but we get it paid to us) to pay for supplies including extra groceries which now have to eat more just to maintain healthy weight or else will be sick again, have high output and short bowel syndrome Anyway, ya, for any Canadians reading this, there are some loop holes getting extra but still, I'm not living it up or anything like that....barely make my rent, get groceries pay normal bills but can't have any extras like I was used to...have buy used clothing and depend on my friends and family who graciously help me out. So yes....let's talk about this on here!
LOVE you, your story, one of my daughters are your age, and was just " showing you off" yesterday when she came over...she's my hair stylist now haha...SO grateful for this day and age where we can turn to the internet for guidance, hope and encouragement...20 yrs ago when I had my original surgery, a bag, then take down, didn't have all this so this time, even though it's permanent, my confidance and positivity levels are much higher. Been wanting to reach out since I 'met' you on here so "HI"🙂.
Totally get everything you're saying about not being able to work and our issues. Going to be looking into making a little extra $ by doing DIY and selling on Marketplace or Etsy since all who know me are pushing me to make, then sell because they know what I can do and it has to be something I can do at my own pace...nauseousness, pain...you know it comes and goes so when I'm feeling good...full steam ahead! Get er done!!
Thankyou for bringing this up and keep up the good work! You're awesome, a pleasure to listen to and beautiful! Hope this message isn't too long but wanted to let you know me and my story. Have a great week!
Yes I would love to talk more about this!!!❤
I needed this video so much. I feel like I’m going crazy trying to live a normal life. The unpredictability of symptoms and scheduling doctor’s appointments and surgeries, on top of everything else… making it all make sense is so hard. People don’t get it. Even people with their own health problems don’t always relate. It can be different from case to case but it makes you feel so alone. Thank you for making this video.
I was an RN and I have endometriosis. I pushed through many shifts being in severe pain and bleeding heavily. Maybe TMI but I would just put in a tampon and use an overnight pad (maybe even stack multiple pads) so I could get through without bleeding through my clothes. I’d be handing out medications and (TMI WARNING) a massive blood clot would push my tampon out. I ended up having a right hemi colectomy because the endo got into my colon. My boss harassed me via phone until I came back to work. I was out for 6 weeks on short term disability. A couple months later my dad went on hospice and I had no options for taking time off so I just quit on the spot and never looked back. Now I work for the state processing Medicaid and food stamps. Huge pay cut but the benefits are good and I can take time off when I need it. I can also work from home if I need to. Luckily I am doing much better now that I’m on medication to stop my periods entirely.
I'd be interested in hearing more about the topics you mentioned, especially medical insurance. Thanks for taking the time to share your journey with us.
I was diagnosed with mild/moderate Crohn’s in November 2020. The pandemic was in full swing and I had been working my paralegal job remotely most of the year. My first symptom was rectal bleeding. At first it was relatively easy to work and go to medical appointments. My illness progressively got worse and didn’t respond to any of the medication that was prescribed. Over a six month period of time I lost 86 pounds due to malnutrition and lost a lot of muscle/strength. It got harder to work as I was weak, tired, had infusion appointments and frequent MD appointments/procedures. Three years later I now have moderate/severe Crohn’s, am classified as a complicated patient, have parastomal Pyoderma Gangrenosum, a large (thankfully not painful) parastomal hernia and a colovesical fistula from my bowel to my bladder. I have been hospitalized 6-7 times, have a loop ileostomy (to allow the inflammation in my bowel to reduce and decrease fecal matter from entering my bladder), am working part time and using sabbatical time to hopefully get me to a late summer surgery and recovery from a bowel resection to remove the fistula, repair any bladder damage, reposition my stoma, fix the hernia and possibly remove my uterus and ovaries if they are involved with the adhesions/scar tissue created by the fistula. There may be other complications or hopefully fewer, but they won’t know for certain until the surgery. I hope that I have enough time to make it through recovery and that once recovered can return to normal work schedule again even if I continue to work from home due to immunodeficiency. If not, I will see if I qualify for the long term disability insurance as I will probably lose my job..,😢
I would love a series like that.
Great idea! I've spent 20 year's navigating working with my chronic illnesses (mostly part time) until now where sadly it is impossible & in my country I am my husband's problem now... It's's hard for him to earn money as he's my full-time carer.... So a very pertinent subject matter for sure Maggie. Thanks for starting to tackle it ❤ Love, Nicole from New Zealand
I'd love to see a video series about it! I'm struggling rn with working and illness and symptoms and disability and finances. It's all so much.
There's a huge variation in chronical illnesses. Both between the illnesses themselves - and also the severity of even the same illness.
And what your job is. It is easier to continue some than others. And then between societies and how they take care of you.
I'm the father of a child (now 20 years old) that was born with profound disabilities and diagnosed failure to thrive. Early in this video you stated "you're sick...what do you do?". That was an eye opener for me as continuously contemplate how to articulate my family's position in life (relative to normal life): financially, and having another child (sibling) to raise along side. You can say that I struggle to understand how I'm going provide for all things. Struggling to understand how I will be able to remain employed, and employable, is also always top of mind. The comment "you're sick...what do you do" provided me with suck clarity of mind relative to better understanding my family's position in life. I wish I would have said to my wife, 21 years ago, that our disabled child is if one of us (her parents) has just been diagnosed with a chronic illness. I wish we would have approached "life", from a strategic standpoint, as if one of us were living with a chronic illness and yet still had to balance all of the responsibilities that come with life in general. Instead, we operated according to our preconceived notions about "normal" life, changing very little (if any) of our long term expectations and simply "ADDED" the disabled child to the overall profile. What's also interesting to me is that I have lived with a diagnosis of Multiple Sclerosis for the last 29 years, and have recently received a diagnosis of Celiac. To best of my knowledge, I believe that the initial presentation of symptoms for Celiac started 11-12 years ago with weight loss (which I simply attributed to stress). As of this writing I realize that I still view our adult disabled child as the long pole in our family tent in terms of illness, and none of my own. I am more mindful as of the (9) months that my wife and I need to understand what our true "life" picture is, and determine a strategy of what it needs to be; one that is built on being realistic and being brutally honest with ourselves about who (and what) we truly are. Apologies for sounding somewhat negative in that last sentence, but I have learned that truth, and accepting truth, is the foundation for positive growth in all areas of life. Blessing to all who have commented, some of your comments are soul crushing. Thank you, Maggie, for the work that you do (in life) in making these videos. You have been a blessing to me this morning as I just encountered your channel for the very first time, today. You are "the real deal" as they say.
I just found your channel as I was searching for inspiration to do with topics that align with my channel which is about my own chronic illness journey but also is meant to serve as a resource for others. I'm sorry that you've had this experience, I have worked all throughout my illness even right after going into heart failure - it's not easy on either side. Well, I'm off to see what you're up to on here now and you've gained a new sub!
Loved this video, thanks for talking about a difficult topics. I live with Lyme/MECFS and Mental illness and I haven't been able to work in like 10 years, since I was in my early/mid 20's. I have done a crap ton of part-time online graduate school in order to keep myself afloat financially with student loans. Over the last year and half I've had slightly better health. Now I'm in a full-time graduate program to become a counselor. My thinking is that I can do that work part-time and probably support myself, plus make my own schedule. But it does mean I'll have to go into private practice most likely, as counseling agencies and community mental health places usually only hire full-time counselors. But at least I've got more options than I've had before!
I'm new to this channel, but not new to Crohns and plaque psoriasis. I'm now 52 and I'm struggling every day. Sometimes every second of every minute. I would love to see more on this topic.
Thanks, young lady!
Thank you for this, just watched it and as I am about to start a new job as a counselor, taking courses online has been relatively easy, but I am hesitant as I consider starting work. Thank you for the reminder to honour my limitations! 💕
Definitely interested in a series! Any tips on easing the financial stress of being chronically I’ll would be awesome.
Absolutely! Might I suggest talking about how inflation has impacted people with chronic health issues. I myself have to eat a gluten free diet. Gluten free foods have always been more expensive than the stuff with gluten. Lately though, it has gotten much worse. I know there are other people who also have to be on special diets like diabetics and people that are on chemo or radiation. From what I’ve seen lately, people that I’ve spoken to have become shell shocked at the cost of food. I feel like people who are recently diagnosed with various illnesses and diseases are kind of being blindsided by inflation.
Just going to add to the stream of comments saying your videos are invaluable, thank you! Much love❤
Yes, yes, yes, definitely something worth talking about. Especially when you add in kids or other family members who also have health issues!
Yep,. You are so right...having chronic illness is alwaY a cost, For me, I'm lucky to work at home, but I support myself...
All your videos are helpful ❤️
I think any advice is appreciated.❤️
I'd love to see a video, or series of videos, about finances and work and insurance as a disabled/chronically ill person.
Love this idea!!! Yes please!
This video sure reminds me how lucky I am to live in the Netherlands. I am unable to work at all due to my health and live off of our version of disability (Wajong). I have good health insurance and I am fine financially, despite having been to college and not having paid any of that off. Of course there are some things outside of my means I would like, but I think that's pretty universal. Things aren't perfect, sometimes it takes a lot of time and energy to work the systems, but overall I am okay.
Would love a video on making/saving money. I’m a stage 4 rectal cancer patient who is no longer able to work in the rehab world. Side effects from surgeries, radiation make working a scheduled job and being productive very unrealistic. Ostomy reversal has been a nightmare. Any great ideas would help us out ❤
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I would love more videos on the financial side of things!
She is very open and very wonderful for sharing
I need that so much! Financial advice, help, etc..
I just found your channel and I've been binge watching. Such great content!! I am VERY interested in watching your upcoming videos about working with chronic illness. :)
I'm an occupational therapist, a health writer and a small business owner. I sadly had to leave clinical practice & close my business because of chronic illnesses. Then last year (with long covid), after an entire life of GI symptoms & no answers from the medical community, I was finally diagnosed with Crohn's Disease during the worst flare of my life. I lost 30+ lbs. in 7 months plus I have muscle atrophy & weakness of course. And it goes on.
Wishing you well!
Jeanne
Girl thank you so much for this, I would love any advice you have to give. I just wanted to add,etsy is so amazing! If you have a talent to make something, you can usually find someone who would want to buy it.(If you have internet access) The same thing goes for selling on amazon or ebay. Take care!
Yes! I’m very interested in the finances. Thank you for all that you do!
Yes I am very much interested I am chronically ill and in chronic pain for 12 years now. But I love to help other and feel a void not working
Hi Maggie...Always interesting to hear your story...I too am a nurse and work 12hr shifts and prefer nights for same reasons as you...I've been working full time for 40 years with Crohns and have a few more to go to get to retirement...I worked through many shifts in so much pain due to strictures, I'd have to go lie on the bathroom floor to not pass out...then when the flood gates opened then many hours in Bathroom for that...since my resection surgery I've been doing better...more energy because I can eat again...Everyone's case is different...I consider myself lucky to have been able to work but I would have preferred to have been more healthy...Shift work and 12 hour shifts are extremely difficult as you know...I like my job but I am ready to retire.
I'm SUPER interested in hearing any and all tips on managing finances. I had to quit high paying jobs and now I'm even struggling to do a 9-6 customer service job.. the flexibility is NOT something employers understand, and it's not enough money to live off of anyway.
Thank you. I am a veterinarian, and I am a single income household. I am feeding tube dependent with many chronic conditions. I have been looking at FMLA or disability and these ideas scare me.
Veterinarian with a complex medically disabled food pump dependent adult child.
I have RA myself. Still manage to do vaccination clinics at night and wellness centers on weekends. Relief vets can make a decent money and with chronic illness less stress is helpful.
I could of made this video myself. I had to leave bedside nursing due to illness. Please please please take off with this topic, I would love
5:42 to watch a series on jobs.
Im a school psychologist, so I work in a school. I was recently diagnosed with Hodgkin's Lymphoma at 26. I'm so thankful that my district will work with me and I don't need a sub, but missing a day (or two) every other week for chemo and half a day on the other week for bloodwork is rough.
I could of made this video myself. I had to leave bedside nursing due to illness. Please please please take off with this topic, I would love to watch a series on jobs.
Your videos are a blessing. Yes I would be interested in patient advocacy helping people while generating multiple streams of income. I have ulcerative Colitis and had My surgery at age 60 in 2019. I have a pension and social security but could use the extra money.
I’m sort of freaking out here. I searched for DIL videos and found you. You showed in your video a camera pan of the Phila zoo and pulling into UPenn and realized we are local local to each other. When you started talking about CHOP??! I almost fell over. I spent 8 days there w/ my then 7 y/o in full DKA and a T1D dx. His nurse? T1D. So, the more I watch, the more we have in common 😱 you’re so endearing I have a feeling I’m going to be binging your videos today!
I'm not sure when you were there, but I worked on that floor at CHOP :) I mainly talk about my GI experience, but so fortunate to work on 5S/5WB with diabetics too! I was there from 2016-2019! At the time we had a few T1D nurses, all so lovely to work with and really kind people. I learned so much from them!!
We have totally different illnesses I have an ileostomy because of colorectal cancer and hereditary 🧬 called FAP but I do got you been helpful and if it wasn't for the wonderful survivors on UA-cam I would have given up. Thanks and stay blessed 💕
Hi. If you talked about finances for disabled people I would totally watch and share. Almost everyone in my life has some kind of chronic illness: from daily migraines, chronic pancreatitis, chronic pain, low vision, and autism etc. I personally have gone through waves. I have Bipolar, Chronic Fatigue, Pre-Diabeties, Anemia, and in the past I have had extreme chronic pain and intense GERD. I have had to shift my jobs around a lot. In the last 4 years especially I would quit a lot of jobs and work a lot of part-time cafe jobs that I could easily leave if I needed to rest. I'm actually currently on a short leave from work because of my health. I currently work a mostly remote 9-5 desk job because I have almost no strength. I return in another week. Anyway I would be very interested in your thoughts.
Yes! I am definitely interested in learning about ways otherw work with something like Crohn’s Disease. I’d be interested in hearing your view and how you incorporate ways to make $$ when living with an unpredictable disorder.
That would be a fantastic playlist
I ignored my illness which I've had since I was nineteen. Every 4 to 5 years I would have a major crash and was off work for months. I would go back to work not fully recovered just pushing my way through. The trouble was every time I had a major crash it was worse than the last one. When I reached age 47 I had my worst crash which made me paralysed in my legs and what would have seemed like a stroke at the time. What started as Glandular Fever at nineteenth, turned into ME/CFS, then a vestibular disorder, Crohn's disease and finally a rare form of thyroid cancer. As much as I would love to have a career again and tried to, my illness has forced me into early retirement. I'm lucky because I had income protection insurance. It is nice to have but I still worry about meeting the requirements every month and how I would survive if I didn't have it since I am mostly bedbound now.
I work part-time for my neighbor. I am so fortunate if my bag leaks, I can come home shower and change, and they have no problems with it. I always return to work. I have even leaked with them there. I was mortified they were ok with it. She told me to go home she would clean up.
I would DEFINITELY be interested in learning any tips and tricks to surviving with chronic conditions.
Yes to all of your suggested topics.
I'm on SSI. If I could find a non scam work from home job that could accommodate me, it would be amazing. Some days I just cannot work at all. Other days I could put in a few hours. I'm just not consistent enough and I need a lot of breaks. That all got me approved me for disability. It just sucks that my past work credits expired, so I'm on SSI which is below poverty. It's hard surviving.
I'm a LPN passed my NCLEX in 2012. The only chronic illness that effects my work is moderate social anxiety, which I struggle with because nursing is very social. Nursing for me was my second career, as I was laid off from my electronics job I had for over 16 years working in data communications as an electronic technician. I enjoy helping people but being around people is a huge stress for me, and I firmly believe it has caused uncontrolled hypertension I take a diuretic, beta blocker, ARB, calcium channel blocker and it's still high. I tried to find a job in nursing outside of direct patient care, but nobody wants a LPN. I have about 6 years of college and I don't want to go through any more school which is why I have not gone in for RN... Social anxiety has ruined my life, destroyed my chances of finding a wife or even a girl friend. I'm 54 will be 55 this year and I've never even kissed a girl. I say this not for sympathy but to help others understand how severe it is for me. For me to interact with patients is challenging and at times I feel like a deer in the headlights, which is why I chose to work in home care, because in home care I take care of only one patient for 42 hours a week three 14 hour shifts and my patient is a non verbal pediatric case so it makes it easier. Been through all kinds of therapy from talk therapy, prescription therapy even tried EMDR therapy which is used for PTSD, have not found anything that works... All therapy did was made me even more poor than I already am.
that is great that even with your struggles you find a way to keep going and a career that you can adjust as needed, so you feel safe and stay active
Hello! My name is Ruth Ann and I've had an ileostomy for 50 years. I will be 70 in just a few months. My bag is probably older than what you are used to but I change my bag every 7-10 days...unless I have that rare leak. I worked at an ice cream shop, I had a day care for 20 years, I was a nanny for 8 years, I had a cleaning business and was a caregiver for an elderly woman. Oh...I had my daughter when I was very sick with crohns, my son was born 2 years after I had my ileostomy. Unless I tell someone that I have an ileostomy, no one knows. My bag is never over my clothes. My stoma is so well placed. It is inside my panties, so under my jeans. I don't understand why so many people have such high stomas. I was asked before surgery where I wanted my bag to be... so I had that choice. I know this is a hodge podge of info but there is hope for those who worry about life after surgery. My husband is so awesome and never makes me feel that there is anything different about me. My hobbies are sewing and shooting handguns. I enjoy your videos. Keep up the good work!
As a midwife in the UK I had cancer at 4 yo and it affected a lot of my body following treatment. My realisation was when I was delivering a baby. I had my hand on the babies head, because once the head is visible you need to have your hand on it to control descent. This poor woman was pushing for 2 hours, yet I was the one silently crying due to the pain. My back and hips were so sore. I called the reg on call, hoping he would step in and use forceps. But he came in and said “give her another hour of pushing then call me back”. I really had to put my big girl pants on and (excuse the pun) push through. I had a hip replacement not long after!
I was diagnosed with Ulcerative Colitus over 3 years ago and I’m the primary income earner in my family. I struggle but so far have been able to work. Not saying it’s easy but I have a husband and kids to support.
Of course! Make the series…I was a bedside nurse in acute care for 20 yrs plus. Then burn out happened!
I was raised to believe that if you are sick or in pain, you "pull yourself up by your bootstraps" and still go to work, school, or whatever else is required of you. Then, in my early 30s, I was diagnosed with ulcerative colitis and learned that I am also neurodivergent. I continue to push myself because I don't know or understand where these invisible "check points" exist: when is it appropriate to go part-time? When is it appropriate to ask for time off for extended flairs? Should I start looking into disability? Etc. I wish there were like health counseling or someone who could help guide me through this. I feel like I'm just going to keep pushing until I am either fired or wind up in the hospital because I don't know when to stop. I understand this can be different for everyone, but any guidelines would be helpful. If you continue this series, please try to include some information or resources on this. Thank you!
Very interested in this topic of coping with chronic illness and finances. Affording ostomy supplies is a big one too, and finding a reliable online supplier. Thank you for your videos!
I think this is a great topic, however, it's more something that feels specific to the US than it does chronic illness. It could really be a productive conversation maybe if it was a collaboration with other people globally with chronic illness. Systems work so differently in regard to health care and the way society views chronic illness and disability from country to country. It is tricky because regardless of what chrones looks like the symptoms and how it presents vary from person to person but not country to country.