Timeline From Employment to Unemployment

[Mike Sturgill]

When my symptoms began, I was a full time National Park Ranger. I supervised an RV park and worked at the park’s visitor center. The job required me to walk through the RV park several times daily and allowed me to interact with people from all over the world.  As an extrovert , it was a perfect job for me and I loved it.

I took a few days off when I initially got sick. But then those few days turned into weeks and eventually 4 months. Fortunately my boss and the rest of the team were very supportive, just wishing me well and allowing me to come back on my terms. Initially I tried half days, which worked for a while, but with my shortness of breath,  talking to visitors became difficult. The constant cough was a great distraction also. As this was the peak of flu season, I could see the concern in their faces.

Once I was diagnosed,  and understood there was no improvement on the horizon, I decided it was time to hang up my ranger hat. It was not an easy decision to make but it was the right thing to do.  Working half days whenever I could meant others had to pick up the slack. Additionally,  my position in the government agency was full time, not part time and I knew I couldn’t stay much longer. After 4 months of sick leave it was time to let someone else have the opportunity.

I’ve only been officially been away from the Park Service for a few weeks so I’m still adjusting.  Leaving my perfect job was not easy, but a big concern was daily exposure to people from all over. Being in my position I could be exposed to any disease that they may be carrying.
In the long run it was the right choice, but I’m still learning how to adapt.

[Charlene Marshall]

Hi Mike,

Your words, story and attitude towards this disease and what we’re all dealing with is very inspiring. Keep up the amazing work, I am cheering for you!

I can relate with you re: the shortness of breath, cough and fear of flu season being a concern for both fellow colleagues and my employers. This is something I worry about, and I know it worries them as well. We’ve changed my role a few times at work to accommodate my needs, I just worry that the day will come when it becomes too much, and also too much risk for my health as well. Do you take any specific precautions or have any tips to help avoid illness, that you feel like sharing? I am always looking for more, as falling ill with IPF is one of my biggest fears.

I think I will refer to your story of courage re: giving up your ideal job due to your disease when my time comes. Thank you for sharing, and I hope your adjustment isn’t too tough. Are you picking up new hobbies with your time away from the RV park?

Take care and I look forward to chatting with you more.

Warm regards,
Charlene.

[Sandra Vanzyl]

greetings Mike Sturgill and Charlene….I must be some kind of wonder patient because I’ve been suffering with ILD over 15 years ago (well that’s when the nasty , gagging cough began ) then misdiagnosed for 7 years with asthma which I do not have and never did.  Things progressively got worse…then I’d have a few months of no coughing….fast forward to January 2018 when I was hospitalized and had contracted pneumonia.   I was in hospital for 10 days and have been on oxygen 24/7 since Jan 3rd.   I managed to get better from the pneumonia but have yet to return to work (I’m a liquor representative , loved my job…and probably should have stopped earlier ) …I’m still an employee there altho they have replaced me with someone who is on contract until I decide whether I will return to work after transplant .  Hubby and I are going to Toronto General soon for the assessment , I cannot imagine why I wouldn’t be accepted but then nothing is for sure.  I missed work terribly and now I don’t think about it much as I am trying to be strong and get strong for my upcoming Journey .   I’m so lucky to have such a Fabulous Husband who does so much for me.  I look forward to hearing back from you both.  CHEERS ….Sandy

[Charlene Marshall]

Hi Sandra,

Thanks so much for your reply and commenting on this topic – it is one I had almost forgotten about, but glad you reconnected to share your experience with us.

Wow, 15 years living with an ILD – you must be pretty amazing Sandra, although I am the first one to acknowledge that I know it wouldn’t always be good or easy times. Glad things were progressing slowly for you, and sorry to hear of your pneumonia in January 2018. That must have been scary for you! It is so tough for us to balance both a need (financially for me anyways) and desire to work, with the condition of our health. Not only is it hard physically to work while living with an ILD, it is also risky due to the germ exposure one might have if they work in an environment conducive to that. I do and I know both my colleagues and families I work with are mindful about not getting me sick, and let me tell you: do I ever feel guilty about that! I am so glad to hear your work is accommodating for you, until you decide what to do about transplant. That is wonderful news re: assessment at Toronto General Hospital. They are an excellent centre!

I am also very glad to hear your husband is supportive in this journey, it takes a village, that is what I am realizing 🙂 Kudos to you for remaining so strong, and thank you again for sharing your experience with us. This is still a major dilemma I am trying to work through… physically and emotionally I want to stop working, but financially I can’t. It’s hard.

take care and connect any time!
Warm regards,
Charlene.

[Mike Sturgill]

No new hobbies but not going to work everyday allows me more time to work on the new renovations on the house we live in. There was some concerns that the work on the house may have led to my symptoms.  Air quality testing and 2 weeks away from the house without any change in my lungs ruled that out. I’ve always been diligent about wearing a mask when doing any work on the house so any exposure would be minimal.

I’m also planning a road trip cross country to visit some of our national parks while I’m still able.

[Charlene Marshall]

Hi Mike,

Nice to hear from you, as always!

I suppose renovations on your house could be considered new hobbies 🙂
When you say that there was concern about the housework causing your symptoms, was this something the doctor worried about in terms of mold exposure, asbestos, etc? Glad it turned out that it wasn’t related to the home you lived in. I know when I was diagnosed my Mom took it really hard and she was convinced it was something in my childhood home that caused this (there didn’t seem to be any other known explanation) and she wracked her brain about what it could have been. I couldn’t imagine the feeling of my disease being caused by where I live, the very place where I am most comfortable…

A road trip sounds wonderful! Any particular National Parks that you’re looking forward to seeing? My friend loves going to the National Parks and has a map she is following for each visit 🙂

Take care,
Charlene.

[Dulecia Lunde]

Hi Charlene the transition was tough and like you I loved my work and being with my colleagues. I went from full time to half days, to half day 3 times a week. Then even that got too much cause I still wanted to complete a full weeks work in 3 half days. I was rushed to hospital by ambulance and after being hospitalized and traumatizing my kids. I had to make the difficult but necessary decision and resign. It has given me an opportunity to pursue other passions. I write poetry, compose and sing gospel songs. I am currently working on releasing my first cd. Good luck!

[Dulecia Lunde]

Sorry forgot to add I was diagnosed in 2014 and resigned in 2017.

[Charlene Marshall]

Hi Dulecia,

Thank you so much for sharing your story with me. I really appreciate it as it seems as though we’re quite similar in our passion for working, and the timeline as well. I was diagnosed in 2016 so have been working full-time for just over two years, but I am noticing that it is getting difficult for me physically. I try to flex my days, and listen to my body but the bottom line is that a full-time job’s worth of work needs to get done, even if my body isn’t cooperating.

I am so sorry to hear of your experience with being rushed to hospital! Did this happen at work? That is one of my biggest fears as I know when and if that were to happen, it would be a long conversation with my employers about whether working full-time is still the best option for me. This would be out of concern of course, but if that happened it would really scare my Manager I think.

Amazing news on your musical success though, that is very exciting for you. I would imagine there is an element of therapy in writing and composing your own music as well. Kudos to you! Goodluck with the CD release 🙂

Charlene.

[Timothy Middleton]

I was diagnosed on 2010 which lead me to take 6 months off then I came back full time for 4 years and got pneumonia and was off another 5 months  I have the best work support on the planet! I have gotten nothing but support even now as I am still going. My lung capacity has been at 31% for eight years with dips in the low 20s with flu. My O2 stays at 95% at rest and light movement. My doctors are also the best with managing my illness and I take care of myself (rest)! I work in the biotech industry and love making life saving meds for people because someone is doing the same for me. I want to work as long as possible as long as I can do this job. If I had more physically strenuous job I would have to find a way to retire as I am only 45 years old.

[Charlene Marshall]

Hi Timothy,

Thanks for your contribution to this thread, and for sharing a bit of your story with us. It sounds like you have an amazing employer, which I am so glad to hear. It makes such a difference when our colleagues, managers and place of employment support us, doesn’t it?

With your lung function consistently at 31%, do you suspect you will be assessed for transplantation at any point? Feel free to answer only if you’re comfortable. Mine is a little higher than that, but not much and also decreases with bacterial or viral infections, like a common cold or the flu. I do my best to stay as healthy as possible, although I should follow your lead a bit more and rest when needed.

I’m so glad you like your job, and to be living with a chronic illness requiring a specific anti-fibrotic medication, I bet it feels rewarding to work in the biotech industry! 🙂

Thanks again for sharing, and I also hope you can continue to work for many more years to come.

Warmly,
Charlene.

[Roger Mills]

Hello Charlene, I was diagnosed in April 2016. At the time i was working at a branch library as a part time non benefited aide. I was fortunate to have worked for 30 years in the same system and to have retired in 2003 at age 50 when my son was born. I went back to work in 2006 in the my current job.

My workplace, supervisors and coworkers have been wonderful to me. I still do the same job as always. They have told me that they will work with me and have been super supportive. I do work some of my shift on a public service desk and around the public. So, i will probably have trouble with illness at some time in the future. I am using oxygen therapy at night because my level has dropped below the safe level when i sleep.

I cope with the risk of exposure to illness by trying to use hand sanitizer and washing my hands frequently. Other than that, in a public job, there’s not much i can do.

I am feeling the disease start to wear me down. I really need the wage i earn to make ends meet, but when the disease gets to a more significant level i will have to resign and rearrange our budget. Thankfully i am on medicare and have supplemental insurance from working for 30 years. I know that won’t be of help to younger folks as yourself. That is my story. I lost my wife of 20 years in June 2017. My son is 15 years old, so my circumstances are far from normal for someone my age. I hope this information helps you.

[Charlene Marshall]

Hi Roger,

Thank you so much for contributing to this thread and sharing a bit of your experience with me. I appreciate the time you’ve taken to do that 🙂

I am sorry to hear of your diagnosis, it sounds as though the timeline was very similar to me as I was also diagnosed in April 2016. I am so glad to hear your workplace has been supportive, and is willing to work together on keeping you at work as long as possible. That is wonderful news, and it makes such a difference to our coping doesn’t it? I do worry eventually about the financial implications of this disease (when it comes time that I will no longer be able to work) but I try to keep my mind as in the present as possible. And, right now I am thankful to have an employer that is as supportive and accommodating as possible.

Do you ever wear a mask at work, particularly during cold and flu seasons? I use hand sanitizer and avoid illness as much as possible, but I’ve started to wear a mask when people are really ill around me and coughing a lot. I don’t like doing this, as I worry it makes everyone uncomfortable but I feel like it is the best thing for me right now.

Thank you again so much for sharing your story Roger, and I am so sorry to hear of the loss of your wife. That must be so hard, to also have to deal with a cruel illness such as IPF and support your son as well. Hang in there, and please feel free to write any time.

Warm regards,
Charlene.

[Brenda Snell]

Hello Charlene. I was diagnosed with Invasive Ductal Carcinoma in April 2017. After surgery I was scheduled for 8 rounds of chemo. I completed 5 of them before being hospitalized for what they thought was pneumonia in August. I was discharged with O2 and referred to a pulmonologist. In October he diagnosed me with ILD. Though not confirmed yet it was his opinion this was a result of chemotherapy received for breast cancer. My treatments were stopped. I was blessed to be able to work at the same medical clinic for 28 years. My position was Practice Manager which required me to travel to different clinics and do a lot of walking. I continued to work full time during chemo, but it was getting more difficult with each treatment. I had exhausted all my FMLA and was having difficulty working enough hours to build up PTO. Working part time required taking another position and coming in contact with every patient coming through the doors. I knew I couldn’t do that due to my comprised immunity. So I finally made the agonizing decision to resign. I worked so long and hard for my position and giving it all up was heartwrenching. I did have employee disability benefits. Looking back on my decision, I know I made the right one considering my prognosis.

[Charlene Marshall]

Hi Brenda,

Thank you for your contributing to this thread, and sharing a bit of your story with us. I’m glad you’ve joined the PF forums!

I can only imagine how difficult it was for you to resign from what must have been such a rewarding career role, especially due to the unfairness of an ILD and cancer treatment. Kudos to you for continuing to work as long as you did, I can’t imagine how difficult it was physically to work throughout your chemotherapy protocol. Has your ILD since been confirmed, and/or the cause of it? I know another wonderful woman who’s PF was caused as a direct result of her breast cancer treatment. Just seems so unfair. This disease is just so cruel, not only does it steal so much from us physically but emotionally as well when we have to give up the things we worked so hard on. I am glad you feel confident in knowing your decision was the best one for you. I think this is important 🙂

You’re very brave Brenda, thank you again for sharing this with me. How are you doing now with your ILD? Have you picked up any new, quiet hobbies while you’re not working? The things I’ve been able to re-initiate (scrapbooking, DIY projects) have been a real gift, despite the reason why I am able to do them now. I try to remember this….

Take care,
Charlene.

[Brenda-Hal Sisk]

Hi Charlene. I am fortunate to still be working 5 yrs after diagnosis. I celebrated my 5 yrs in May 1st.  I have a great employer and am blessed to be able to work from home. It’s a desk job with lots of computer work but a lot of phone calls too.  Coughing is an aggravation, but I just hit mute on my phone. Everyone I deal with understands.  I do my fair share of travel with work as well. I fly a lot. Getting ready to leave in a week for a 2 week trip to Europe for work where I will be doing a lot of walking. I’m on supplemental O2 when I exert myself so on trips like this I travel with my POC.  I’ve not had to use it in flight before, but this time may be different. I have my 6 month PFT next week before I leave and having a CT as well. We’ll see how things are going there. I’ve been hovering around 50% lung function since diagnosis. I’m curious to see how my lungs look now. I do use a mask in public on occasion and will try to use one on my flights too. This flu season has been horrible around us and I’m not taking any chances. I also use essential oils and EO based whole food supplements to boost my immune system. So far between God, these natural blessings, exercise & trying to eat healthy I have stayed well without any other meds, except for the IPF of course.

Take care.

Brenda

[Charlene Marshall]

Hi Brenda,

Wonderful to hear from you, thank you so much for sharing a bit of your story re:employment and IPF on this thread! I am very inspired, and filled with hope from your comments and hope that I can still be doing as seemingly well as you are at 5 years post diagnosis.

Your employer sounds wonderful, and very supportive. Did you always work from home, or was this something you started doing post-diagnosis? Please keep us posted on how your UK trip turns out – I am planning to go this September, and will also have to bring my POC with me. My experience with flying and IPF has not been “textbook” that is for sure. For example, I believe my lungs are worse this spring but when I flew last week to Vancouver, I didn’t need my oxygen on the flight. However, when I went to NYC in December, I did need it but I would have thought, based on my symptoms, that my lungs were a bit better then. Who knows, so I do hope your flight goes well and that you enjoy Europe. How exciting! Are you going for all work or some leisure as well?

Yes I agree, this cold and flu season has been brutal so I am glad you’re taking your masks with you. I use a VOGmask in public and on the plane, as my respirologist said that the circulation of air on a plane is one of the worst environments a patient with compromised lungs and a weakened immune system can be in. Therefore, better safe than sorry for me 🙂

Goodluck with your appointments this week, I hope all goes well and that you can enjoy your time in Europe! Glad to hear you’ve also managed to stay so well – sending best wishes that this continues on for a long time.

Warm regards,
Charlene.

[Brenda-Hal Sisk]

Hi Charlene,

It’s been a while since I touched base with you.  I pray you are doing as well as we all can hope for.  Have you taken your trip to the UK yet?  How was it?

So to update you on my Europe trip.  It was long and I didn’t realize how worn out I would be.  Everyone was very accommodating, but just the nature of my work during the 2 weeks was very tough on me.  We didn’t get to have much leisure time, but it was enough for me that’s for sure.  So much driving and walking.  As you know, with being on O2, walking is just not as fun as it used to be.  Luckily I had a co-worker with me to do all the cross-country driving.  I was also glad I purchased extra batteries for my POC; they have come in handy several times since the trip in May.  I also noticed it took me longer to recover from this trip than I had expected.  I was glad that I had a full 3 months before I took a fun trip to Salt Lake City in September.  It took every bit of that time to recover so I could enjoy myself.  Now I’m just going to take it easy for the rest of the year as I continue to work from home and only make short trips to our corporate office (2 hr. drive away) when needed.  To answer your question about working from home, I’ve pretty much been working from home for over 10 yrs. now, pre-diagnosis.  It’s worked out well for me and especially now with my IPF.  Yes, my employer is great!  They really are more like family to me; they are the best!  The owners even traveled with me to Salt Lake City last month; we went for an essential oils convention.   I love that technology has made it so I can work remotely.

Well, take care, Charlene.  Let me know how your trip went.

Continuing to keep you and everyone else in my prayers.

Brenda

[Charlene Marshall]

Hi Brenda,

It is so nice to hear from you, thank you so much for writing and for all of your kind words! I can’t believe you remembered my planned trip to the UK — people on this forum always amaze me 🙂

Unfortunately my medical team didn’t approve me to travel outside of Canada at this time due to my IPF, however, I did take a trip in September and I loved every minute of it. I met friends back in June who stayed with me for a wedding (they are in-laws of a colleague of mine) and I had no idea how much we’d “click”. After 5 days it was devastating to see them go, as they live in Nova Scotia so I went out to visit them in September! We had the most incredible time, and spend most of the time in Cape Breton visiting the Cabot Trail and the Cape Breton highlands which were absolutely stunning. I was gone for 5 days and did a lot of preparations ahead of the trip just in case something happened but it didn’t, and I came home feeling so rejuvenated. Thank you so much for remembering, it really means a lot to me!

Thank you for updating me on your Europe excursion, although I’m sorry to hear it was tougher than you anticipated it to be. I remember this feeling the very first time I travelled to Australia with my oxygen after being diagnosed; it was hard to admit it but I was so tired that I needed to come home. You’re very right about walking with oxygen being difficult, and I remember someone telling me that there is so much walking around in Europe. Kudos to you for giving yourself that much-needed time to recover. Did anything in particular help with your recovery after such a big trip? I ask because I plan on continuing to travel – I am going to NYC in December – and feel myself getting a little more worn out after each vacation.

That sounds like an amazing workplace you have, very lucky and I am so glad they have given you the chance to work from home, especially since your IPF diagnosis. Which oils convention did you go to, was it DoTerra by chance? My cousins are wellness advocates and I think they were maybe at the same convention as you in Salt Lake City! Isn’t the power of technology amazing? Contrary to my manager liking this, I’ve actually been able to do some work while in the hospital (there is nothing else to do sometimes anyways…) by using my laptop in my room. It can be a great way to pass the time, not fall behind on work and not lose out on a bunch of sick hours.

Thanks again for sharing, and I’m so glad to hear from you. Continuing to think of you all as well, and sending much love your way.

Charlene.

[Tracie Shollenbarger]

Hi Charlene,

Well these inspiring stories make me a little sad.  This is so new and raw for me.  I absolutely love my job as a pediatric home health nurse, caring for medically fragile children with mental and physical disabilities.  I was diagnosed finally after almost a year of being sick and missing alot of work. So Jan.  2018 to July 2018 things got so bad and I was hospitalized in July and have never been able to go back.  I’m home on o2 and can’t maintain 90% with any exertion.  My company has extended insurance as long as possible.  My FMLA ran out last week.  The main thing is that I just can log around o2 and do the job needed.  Special permission would have to be granted by the patient’s families just to have o2…they basicly don’t know what to do with me.  All the kids or the families also exposes me to illness…. Etc.  I’m not really well enough to work without restrictions, but may not be ill enough for social security insurance.  I’m in limbo.  I have 20 thousand dollars in student loans for nursing,  and was registered for classes this semester to continue my education… Which I had to cancel back in August because I knew it would be so much walking it would be too much.  I don’t know what I’m doing.  But I am thankful to find a group of people to talk to about this.  Thanks for reading.

[Charlene Marshall]

Hi Tracie,

Thanks so much for joining us on the forums, and for writing about such a difficult topic for you. I admire your courage and the vulnerability it took in sharing what a difficult time this is for you. Please know that you’re among some amazing people here who truly “get it” and we’ll do our best to help as much as we can!

I vividly remember that feeling of being ‘raw’ as you describe, or numb from all the emotions and thoughts circling my head following my diagnosis. Not only was I angry that physically this disease was going to take something away from me that every takes for granted (breathing); it was also going to rob my career from me as well, which I worked so hard for. Like you, I absolutely love my career and it actually kind of parallels with yours – I work with children and families some with a developmental diagnosis, others going through trauma/grief and mental health as a therapist and IPF has made this so difficult. I am actually just now in the midst of considering my resignation and accepting full-time disability. It pains me to no end though. I know my situation is a little different than yours, because your o2 has prevented you from going back to work at all so I don’t mean to discredit how difficult this time must be for you.

As hard as it is to say this, it has to be time to prioritize your health and needs, is there anything you could do in your line of work while protecting your lungs? You are totally right about the exposure to illnesses and actually, this is one of the factors that is making me think of resignation; the exposure to all the germs from the families that I meet. Unfortunately I’ve seen patients with IPF get ill quickly and never recover and that really scares me. Could you ever do consultant / mentoring in your line of work? What about teaching, are there opportunities for students or new staff to join your company where you could teach/instruct them on their new role? Just trying to think of possible ideas to keep you engaged in something you love so much but also keeping you safe and conserving your energy as much as possible.

Feel free to write us any time, and I’m curious to know if any of the options above might be a possibility for you. Thinking of you so much, and so glad you’ve become part of our forums community.

Warmest regards,
Charlene.

[Timothy Middleton]

Tracie, just stay strong. I know this is tough but it will get a little better I ended losing my home back in 2010 because I was unable to work. It took them 10 months to diagnose me. My lung capacity it 31% but some how I am able to work daily. I truly believe you will qualify for SS if you need it. Your doctors will write whatever document they need to get you approved. Just get the process started online and don’t be intimidated by it because you aren’t lying about your condition. You’ve paid into that system so please get your money so you can live and feed yourself. I pray for all people with this horrible disease, I hate it but I have to keep fighting. God bless and goodluck.

[Charlene Marshall]

Well said Timothy, thank you for your kind words to Tracie and to all of us! As always, it is wonderful to receive your input 🙂

Did you get many responses about the lung transplant question you posted awhile back? Good suggestion about starting the process of SS and not letting it intimidate you, I certainly understand why this would for people.

Hope you’re doing as well as possible!
Regards,
Charlene.

[Tracie Shollenbarger]

Thanks Timothy for the encouragement.  God Bless.

[Brenda-Hal Sisk]

Tracie, I agree with Timothy, stay strong and fight for what is rightfully yours.  We all have to do what we must to preserve what we have.  You may have already thought of this, but you should check into getting a deferment or even forgiveness on your student loans due to your health and financial hardship.  Just a thought to help take some pressure off of you.

Take care, I’ll be praying for you.

Brenda

[Charlene Marshall]

That is a really good idea too Brenda!
Tracie, did you purchase insurance on your loans when you opened them for your nursing degree? I’m not sure if it works the same in the US as it does here in Canada, but I opened insurance on my line of credit for school as well, pre-diagnosis. I’ve never looked into it, but now I will when I go on full-time disability as I’ve paid for that insurance and I know they will cover my payments upto 24 months worth if I am not working. Maybe your loans have this option, or a forgiveness opportunity due to your health issues? Something to think about for sure 🙂

Charlene.

[Tracie Shollenbarger]

Thanks guys.  I wish the best for you as well and will keep you in my prayers.

[Steve Dragoo]

I’ve decided to become a dar.e-devil in the time I have left and fly to the Philippines with no O2 onboard and live in the hot humid environment until I can’t.  Laser therapy may change that dare-devil to a regular citizen. – Time will tell… – Steve

[Charlene Marshall]

Really eager to hear how your consult on Wednesday goes Steve. Keeping my fingers crossed for you and hoping it all goes well! I’ll be thinking of you 🙂

Charlene.