February 5, 2020 at 3:21 pm #22850
Many of us strive to hang onto the parts of our lives outside of our idiopathic pulmonary fibrosis (IPF) diagnosis because it helps us remember that we’re more than a “chronically-ill patient”. Or at least, this is how I feel. I want the other aspects of my identity to shine through, and never want to be defined as the young adult who is sick with a fatal lung disease. I recently wrote a column on who I am outside of IPF and it is really important that these other identities remain intact while I battle IPF.
One of those identities is “colleague”, and I am privileged to enjoy my career role which involves helping families through difficult times. Sadly, working full-time was getting difficult before I recently fell ill with pneumonia, influenza and strep throat. Right now it is impossible, and I’m not working as I continue to recover so it feels like an important part of my identity is missing.
Knowing when to stop working with a chronic illness is a struggle that many of us share. I’ve heard it discussed on the forums before, and I don’t know what the right answer is as to when to stop working. There are many things to consider when thinking about this: financial stability, mental stimulation, social aspects of working as part of a team and routine. For me, none of these are easy to let go of. I recently read an article on TheMighty about ceasing to work as a patient who is chronically ill and wanted to share it with our forums community.
What were some of the factors that helped you decide it was time to stop working full-time?
Was that decision difficult for you? If so, what made it easier?
February 8, 2020 at 3:04 pm #22889Andrew (Randy) HicksParticipant
This is a very interesting topic for me since I am still working full time. I love my job teaching electronics for the Navy and so far I have been able to tolerate being tired when I come home and the loss of breath when I go from the car to the second deck and back to the car at the end of the day.
I have my portable oxygen with me when I am at work, however since I work with electronics and all, I can’t wear it in the lab. I have compensated by not roaming around the lab and classroom as much as I used to and I try and slow down my delivery while teaching.
The folks I work with are great. They get on my case when I do something dumb like carry test equipment around or try and lift stuff.
I know it won’t last forever though and I think knowing that I have to get up in the morning a have those responsibilities actually helps me fight this disease.
My doctor is very happy with me. We just got all my comparison results from all the tests when I was diagnosed about 7 or 8 months ago and results from the last couple of weeks and the disease has not progressed.
I just constantly have the thought in the back of my mind, that some day I will have to hang it up. Before this disease came along I thought I would be phased out due to changing technology, but I have kept up to date with the advancements in technology and can teach some of the new systems as well as the old ones.
Now I just fear either catching something from a student or even my grand children that might set me back.
I guess all I can do is keep right with the lord and follow the doctors directions.
February 9, 2020 at 5:57 am #22890Mark KoziolParticipant
Hello Randy, thank you for sharing you for experience. It is always nice when you can have an occupation you love. In the future you may have to make some modifications but that is ok. I was on 8 lpm when I had to walk and I would still have coughing episodes. My insurance company purchased an electric chair for me that I could use for work. It was wonderful. I worked up until the day I received the call for transplant. It was important for me to keep working because it took my mind off my disease. I also had a lot of assistance from my colleagues. They were wonderful and still are. I can no longer work in education because I would put myself in a predicament because of my low immune system. Randy, stay active and do what you feel you need to do. It sounds like you have great colleagues, don’t be afraid to ask for help when you need it. Take care, mark.
February 11, 2020 at 2:13 pm #22929Sara TannerParticipant
Thank you so much for this post about you continuing to work! My husband has improved greatly after hospitalization with a bad bout of pneumonia & shocking diagnosis of IPF while there. This was 4 1/2 months ago. He had been working full time & wasn’t ready for retirement, but was forced to due to 02 dependency after being released. He now can go hours without 02 at rest. We are in the process of trying to get poc & he is determined to go back to work at least part time. This will give him Hope as we haven’t heard of anyone still working with 02 dependency!!
February 12, 2020 at 5:46 pm #22945Virginia CurrieParticipant
I am still not fully diagnosed of IPF but I was debilitated by the thought of it. My MD is trying to differentiate IPF with hypersensitivity pneumonitis.
I am sad because it seems like nobody cares at work. Thank God I take Neurontin to stop the chronic cough, otherwise, I will be forced to leave work.
I need to work to support myself and be able to afford the medical insurance. Not having a belief in God, I will not able to stand this curse bestowed on me. I am trying to be as strong as I can so I can be productive. All I need to do is to be positive and rely on Jesus that HE will not forsake me. My faith keeps me on.
February 13, 2020 at 3:09 pm #22968Mark KoziolParticipant
Hello Virginia, I am sorry to hear your colleagues are not giving you support when you need it most. After your diagnosis you will be considered disabled. Hopefully your employer will be able to modify your work to help you with your disease. If they have the ability to do this, then they are bound by ADA law to accommodate your disability. Take care, mark
February 14, 2020 at 10:54 am #22987
Thanks so much for writing and contributing your thoughts on this topic – it is a really tough one for me, so I appreciate hearing from others! It is also so reassuring to hear your husband is recovering well since pneumonia and reducing his oxygen dependency. I’m really hoping I can do this as well. His story of returning to work gives me hope, many thanks for sharing and wishing you both nothing but the very best.
February 14, 2020 at 1:23 pm #22993NanParticipant
I too have not had a full diagnosis yet, well I have but they now are not sure lol so I wait and have tests. I was off for 3 weeks from work because of the SOB. I was bored. I had a meeting with HR, union and management. They were wonderful and we came up with a plan for me and for them as I can still be productive. They gave me a desk job, a parking spot on main level and let me lie down if I get tired ( haven’t had to do that yet). The coughing is a pain and sometimes co worker will say something like ” you are coughing a lot today” but they are very supportive. I hope it is not too annoying for them. I am very happy because I like this desk job they gave me and it is good for me to go to the office rather than be a home all day bored and doing way too much googling!
February 14, 2020 at 1:58 pm #22995
I am so happy to hear that your employer is accommodating of your needs for modified work. This is so important, and many agencies don’t do this with a willingness to help their employee. Glad you can still be in the office and contributing to a sense of accomplishment, though I know the role is different than before. Thanks for writing and sharing your experience with this topic – it is a tough one for me to navigate, especially as I continue to recover and am uncertain about what my return-to-work plan will be.
December 17, 2020 at 7:56 pm #26562LauraParticipant
I’m newly diagnosed and start OFEV tomorrow once it arrives.
I was hospitalized for pneumonia for almost 3 weeks and since discharge, I have had constant chest pain, pressure and shortness of breath.
I don’t want to stop working. I need to work. I am the only one working in my family currently and this morning frightens me. I have no nest egg. I have no retirement or savings .. it’s all gone.
I will be 50 in a month and I’m terrified. When I’m not able to work, what happens to my treatments.. I won’t have insurance.. the costs ..
I am so very overwhelmed. I got short of breath sticking my leg through my pants .. 🙁
December 19, 2020 at 11:12 am #26576
Thanks so much for writing and sharing your thoughts on this topic. It is one of my greatest fears as well! I’m actually off right now, though unplanned and I’m trying to take this opportunity to rest and reflect on what’s next. It really causes a lot of mental anguish though, I completely understand.
With a confirmed diagnosis though, you should qualify for disability in your state, right? I know it is less than the earned income with work but its better than nothing.
How is it going with the Ofev so far, have you started it?
December 18, 2020 at 12:34 am #26565Virginia CurrieParticipant
Hang in there. It’s everyone’s fear.
December 18, 2020 at 1:36 pm #26570Guy EnglishParticipant
I was diagnosed with IPF 8/2016. I too have no health insurance. I gave up my health insurance in 10/2018 due to some misinformation from SSA. But that’s a long story for another day.
As I said I was diagnosed 4 1/2 years ago and am still working as a long haul auto transport truck driver spending many weeks at a time away from home and my family. Aside from loving my job I am the only bread winner in the household and very much need the income that SSD would not afford me.
In some ways I’ve found it more financially beneficial not to have my health insurance.
You see I was paying almost $1000 a month with a total out of pocket deductible of $5200. At years end my total expenses including premiums and out of pocket expenses were around $17,000.
Without any insurance I’m forced to pay it all out of pocket. But what I’ve found out is that services, IE. cat scans, doctors appointments, breathing tests, supplemental oxygen, are all much cheaper as a self pay patient. With my two or three doctors appointments and all the tests, I’m averaging less then $3,000 a year.
Because my income for my wife and myself fall under six times the poverty level threshold of around $83,000 the pharmaceutical company Boehringer Ingelheim is wonderful enough to gift me my OFEV for free every month.
Please don’t misunderstand me. I’d much rather have really really good health insurance. If for nothing else but just the opinion of receiving a lung transplant someday. But for now I keep plugging along and working as much and as long as I’m able because I really do feel working keeps me going and feeling as good as I can be.
So when someone asks me how long am I going to keep working, I give the same answer I’ve given for the last 40 years. “Till my boots are pointed towards the sky”
December 22, 2020 at 4:22 pm #26599Sam GilmoreParticipant
I had been working full time but since IPF got worse and I could not climb stairs or talk to customers with out coughing I decided to stop work. For me it was felt defeating But I know I could no longer work. Fortunately I am at retirement age so the financial part did not hurt me but I just felt like I was of no use any longer, but with the help of my family I do not feel that way now. Thannk for the post
December 22, 2020 at 9:24 pm #26603
Thanks so much for sharing Sam! I’m glad the feelings of defeat are no longer there, and that your family has been helpful. Take good care and happy holidays!
December 22, 2020 at 4:39 pm #26600
Good afternoon everyone . Looks like we’ll have a 2nd Randy here today. Hi other Randy. This is a good conversation for me about work. I was raised on a farm in South Dakota back in the 50’s. Seems I have worked my whole life. Not only on the farm doing farm work, but at the age of 8 I drove my grandfathers truck on a mail route and drove about 150 miles/day. My grandfather did carpentry work in the summer and my grandmother was to drive the mail route, but she was sick a lot, so I did.
From there I worked till I thought I was retiring in 2012. But you know, after working all those years, you cannot stop. So I have been working part-time jobs for the past 8 years, then this came along. After 4 months in the hospital and being told what I have, I was shocked for awhile and not knowing what to do. I really wanted to go back to work. My last job was working with a dozen other retires moving cars around western Colorado. It was great. We were all the same age and had some things in common. Now I have told I cannot work because of only 1 lung and cannot go up in altitude. You really don’t know what to do. You have to have oxygen and there isn’t enough coming out of your machine to go up high in altitude. Cannot get a job around town because of the oxygen problem, have to have at least #6 when doing anything. So, you stay around the house and go nuts. I do get around a little running errands but that is it.
I have been doing a lot of studying of the different drugs that are being put into trail for us. I have been writing up the ones I think have a chance of helping us. There are some that look promising and others…..
If anyone has answers on how to keep yourself from being bored to death, would like some thoughts .I used to make model cars, but now I am to shakey to do the fine detailing that is required. If you would like some info on the drugs I have been studying, let me know and I’ll pass the info to you.
December 22, 2020 at 9:26 pm #26604
Thanks so much for sharing. Aside from the obvious financial implications of having to stop working from IPF, the boredom and having to be home all the time is my second greatest fear. I’m always someone who appreciates being busy, always on the go and having tasks to do, so not being able to do that worries me. I do have a quiet hobby which I enjoy, it is crafting and it keeps my mind and hands busy. However, it won’t be long enough to sustain me. I’d love others’ thoughts on how to keep yourself engaged at home after having to stop work, as well.
December 24, 2020 at 4:08 pm #26633Andrew (Randy) HicksParticipant
Hi Randy, this is the other Randy.
I am still working though I do have to use my oxygen a lot more. Even with the Covid I have been able to work since the military folks where I work are exercising a lot of care an procedures to keep things safe. We have our temperature taken upon entry to the building each time we enter. If anyone goes out of town or has visiting relatives they stay at home for two weeks. Also my co workers keep an eye on me as sometimes I get excited when teaching a subject and have a tendency to turn a little blue.
Keeping busy and exercising my body by working is definitely helping me keep things in check and though I get more aches and pains, and I sleep more, my disease has not progressed much according to my doctor. When my time comes to hang it up, I am now 65, and I know I can’t keep up with things as they are forever, I will try and find a hobby of some type to at least keep my mind occupied.
You said your hands are a bit shaky, but maybe you could find some things to do online. I love to read up on history, and I also play a few online games like Farm Town which don’t require quick moves and such. I also like to do jigsaw puzzles and Sudoku. I still do small projects around the house that do not take a lot of energy or effort, but do keep me busy. I recently replaced all the smoke detectors in the house. I just replaced on a day so I would not over do things.
Just try and find something you like that will keep you occupied, and go with it. It doesn’t matter if it takes you a week to get something done, that you used to do in a day.
I hope some of this helps and wish you good luck finding something to keep you occupied in the future.
December 24, 2020 at 5:44 pm #26634
Hello Charlene and Randy Hicks and all fellow readers of our blog. I am trying to find things to do that don’t take alot of oxygen to do. My used to be hobby was working on our lawn and wood working projects. I have always loved working with wood making different things. I had a wood shop with every tool you could imagine. I built things for my family and rebuilt furniture.It was going to be my business when I retired from full time work. That had to go by the wayside with the shaking, the oders of stains and power saws. I also did some interior house remodeling, rebuilt the inside of a travel trailer and built a storage shed or two. I have always been busy. Now with winter, it’s too darn cold out. My air line freezes and the Inogen doesn’t like to work if the temps are under 32 degrees. So, I am inside. My wife bought me a coloring book and a puzzle to give me something to do besides helping her with house work. I just cannot get excited in doing either one. I also have built models cars since I was 8-9 years old. I have had over a 100 in my life. I have tried to do them still but I start shaking and cannot get things right. Dang drugs. So, hopefully I will still be in motion this spring so I can get out and do things again. I bought an older car that I want to get all ready to give to my granddaughter when she turns 16 next fall. I also want to do some traveling in non-mountainous areas. Going to look into renting a motorhome with a generator to power my oxygen concentrator. Will see how things go.
Meanwhile, I wish everyone a Merry Christmas and have a great family get together. Yak at you all later.
December 28, 2020 at 10:43 am #26659
Thanks so much for writing and sharing a bit about your former hobbies with us. I can imagine how frustrating it is not to be able to do the wood-working you once loved or the interior remodelling. This disease is so cruel and unfair! Hopefully when the weather warms up, you can spend some time outdoors doing things you enjoy. Let us know how the motorhome rental goes, that sounds like a lot of fun! Is there any particular area of the country you want to travel to/explore?
I hope you had a great Christmas and wishing you all the best in 2021!
December 30, 2020 at 3:15 am #26676
Hi Randy – I hope you are able to go RVing we went to as well if we ever get stateside again. But beware, campsites usually have restrictions running generators evening and early money so you will need a battery pack or two and hopefully, they recharge via USB while driving.
December 29, 2020 at 3:16 pm #26668Cheryl thomasParticipant
I would like that info on some of the trial drugs he has researched. I am going to be in a clinical trial in January.
December 30, 2020 at 10:06 am #26687
December 29, 2020 at 8:17 pm #26673
A peaceful, joyful, healthy, and prosperous new year to you friend. I am doing better and even cooked a few strange things and no one got sick from them…
When I went to the USA in March 2018, I quickly found an outside sales job which was ideal for exercise but my knees stopped me. The boss said to come back when I could, however, I found another outside sales job to businesses with a lot less travel but my lungs stopped. My church hired me as a Bible worker but my car and my lungs stopped me. SO I returned to the Philippines.
From March 2013 through 2018 I worked a bunch of short term jobs on Upwork and it fitted nicely but I can’t work in the middle of the night over here. Sooo my wife will retire in April from 35+ years of teaching and we have casually looked at online teaching (tutoring) jobs and that might work for us.
I am still able to do limited work but cough a lot more these days. I want to work because stimulating my brain helps me a lot and my memory usually seems pretty good. Hope that holds up…
January 1, 2021 at 10:06 am #26725
So nice to hear from you, thank you for writing! Happy new year to you too, wishing you all the very best for 2021… thanks for being such a great member of our forums community 🙂
Best wishes to your wife’s retirement in April, and hoping you can find some meaningful work as you feel you can do. I agree 100% re: the stimulating of the brain and helping with working memory. I also find it helps me maintain an “identity” outside of just being a patient, giving me something to do and focus on. Hope this year is kinder to all of us!
Take good care and so glad to hear you’re starting to feel better!
December 30, 2020 at 2:26 am #26674gastonParticipant
Dear, the conversation has been very useful in relation to when to stop working and also what to do to continue doing when you already have to change your routines due to lack of oxygen. I thank you for that information. I just retired from my job at the age of 63 and I am undergoing OFEV treatment. I have been retired for 3 months from my job and I have taken care of some housework at home, I think this is the beginning of my life change but I am wondering if I can take part-time jobs. It is a developing issue.
For my part, I will follow the conversations of this blog and I send you from Chile wishes for a good year 2021.
December 30, 2020 at 9:56 am #26684
Thank you so much for writing, and I hope starting Ofev has gone well for you. I’m really glad to hear this conversation has been helpful! So many of us rely on our work for much more than the financial implications, it is part of our identity too so not being able to work and/or looking for other work that is just as meaningful is important for all of us. Steve shared some online writing gigs, which have been a saviour for me and allows us to do this safely, and while tethered to oxygen. Take a peak at those and I hope they help 🙂
Best wishes for 2021!
December 30, 2020 at 3:41 am #26675
I’m not sure what you did do for work but a couple of ideas you might look into are Upwork.com (charges a fee only from work you do), freelancer.com (charges a fee upfront). I signed up for a newsletter free daily in my email and lots of times they have work at home / senior job ideas; MoneyTalksNews.com.
I have worked through Upwork since April 2013 but really slowed down since returning to the Philippines in May 2019. A few years ago I hired a sales rep from Brazil to help develop that market so Upwork is truly international. Hired workers from several other countries as well.
Hope something helps you…
December 30, 2020 at 7:15 pm #26697
Cheryl, hi. This is Randy Thornton. Please send me your email address at the email address Charlene posted. I will be happy to send you some info.Make a note in the heading why your writing. If I don’t know who the email is from, I just delete so I get no problems. What drug are you going into trial on? I can send you info on that drug. I basically have a list of RX’s for IPF with a short posting of what it does and what stage of trial it’s in. The ones I really think could do us some good, I have written up and can send you a copy. I’ll be glad to help as much as I can.
Good luck, Randy
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