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This topic contains 17 replies, has 5 voices, and was last updated by  Beverly 2 months, 1 week ago.

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  • #18908
     Beverly 
    Participant

    I would love to hear people’s experience with working after a diagnosis. How long they were able or are they still working? Did medication help with stamina?

    Thank you!

  • #18912
     Jen Cueva 
    Participant

    Hi Beverly, I didn’t work at all for a while after diagnosis. I am grateful now that I have a part-time job working from home. I write a column here.

    I do know many others here in the forums and who I’ve met online ( and in-person) who do work. We all react differently to the medications. We are all at different stages in our disease progression.

    This is something to discuss with your doctor when you go and also you have to pay attention to your body. Please keep us updated and I would love to hear more about your job. It depends on how physically demanding the job is as well. Wish you the best.

    • #18977
       Beverly 
      Participant

      Jen,
      I appreciate your response. I am feeling completely capable now, because it’s summer and I am off😊. I work with developmentally disabled students of varying needs. In the high school we work on functional academics and I like to take them out into the community as much as possible. Love my job, but it is stressful and at times I do have physically aggressive students. I would like to do it as long as I am capable.

      • #18982
         Brittany Foster 
        Keymaster

        Beverly,
        It really seems like you LOVE what you do and that is so important and really helps us to push through the harder days. I know that it is such a rewarding career and I think it’s amazing that you get your students out into the community. I know you will figure out how all of this works best for your health. Sometimes it requires us (as teachers) to come up with our own accomodations that are unique to our own needs. We can easily do it for others especially as special educators !

  • #18913
     Beverly 
    Participant

    Thank you Jen, it makes sense to wait and speak with my doctor. Today I feel like I could totally do my job, last week was another story. I am a special education teacher in the high school. Absolutely love my job and have worked so hard to get where I am at. There are extra things I could cut out, it’s either that or I won’t last very long.

    • #18915
       Jen Cueva 
      Participant

      Beverly, what a great career. It definitely requires compassion and patience. I hope that you can cut out some things as you mention and make it work. I hope that your meds are effective and will help you continue to work. I agree you worked hard to get there. Let us know what you and your doctor decide.

      I definitely can relate to one day feeling like you can do it and the next not too well. Have a great week.

    • #18923
       Brittany Foster 
      Keymaster

      Hi Beverly,
      I graduated with an elementary and special education degree and worked as a teacher for three years. TAXING on my body is an understatement. Honestly is was the most rewarding career for the three years that I did it working in a middle school with 8th graders and many of my students still reach out to me to this day. I had to leave teaching because I ended up getting meningitis from a stomach bug that I caught while there and was very ill for months. After that my heart and my health were just not the same. I had to choose to leave but still work with children as a private nanny. I also do online work for BioNews as a columnist and forums moderator so I try and stay busy and also am able to “educate” others in a way too ! So even though it’s not exactly the career and jobs I had planned for myself, I’m glad I ended up on this path too!

      • #18978
         Beverly 
        Participant

        Brittany,

        I have the same endorsement, thank you for sharing your experience. I think I will have to learn to be flexible and learn to adapt. Life throws curve balls and I will have to figure things out.

  • #18940
     Steve Sallee 
    Participant

    I still run my Auto/Light Truck Repair shop. Challenging to say the least. I try to adjust my work schedule as best I can. I put in for SS Disability and I was told to close my business in order to have “zero” income to qualify. They refused to look at my health issues until my income was “zero”. Unbelievable. Like I really trust the government to send a check in a timely manner (if they decided to). But it seems every deadbeat in the world can get it as long as dummies like me pay into it. I am amazed beyond words.

    • #18944
       Brittany Foster 
      Keymaster

      Hi Steve,
      I know that it is a struggle to apply to disability. I ran into a similar problem and had to be out of work and not making any money for 6 months before they looked into my file. I technically was out of work for that time and didn’t have to wait the 6 months, but waiting to “prove” that you aren’t earning and income and even more waiting to hear back with an answer can equal about a year or more sometimes without any pay. This is really difficult and sometimes impossible for people to wait on! I wish there was an easier way!

    • #18968
       Jen Cueva 
      Participant

      So sorry you’re having such a tough time with SSD, Steve! It’s definitely awful how we have to convince them how sick we are. I like for myself, it took a while to get approval. I doc have to have multiple doctors send in documentation. I also kept journals of how my PH, etc., affected my activities of everyday living.

      I hope that you’ll get help soon. I know mechanic work is labor-intensive. My hubby is a diesel technician, it is physically demanding work. I applaud you for that hard work and I hope that Joh can take care of yourself. Not being able to do the things we once could do is heartbreaking and frustrating, too.

      • #18973
         Brittany Foster 
        Keymaster

        I can only imagine how difficult that work is. My boyfriend is a store manager of a Firestone and has worked on cars as a mechanic before that and before getting a management position. I know that he still helps out the guys at work though and he comes home physically exhausted and doesn’t have health conditions anywhere close to what you do. I can’t even imagine. I know it is hard. Is there a position you could apply for or something that would be less labor intensive? Just thinking of your health !

    • #18979
       Beverly 
      Participant

      Steve,

      Thanks for sharing I am simply terrified of not having income, especially with my hubby in school right now. I am hoping that is very far off. I can’t imagine what you are going through, I am hoping you will be able to have things work out.

      • #18983
         Brittany Foster 
        Keymaster

        You’re right Beverly,
        It must be hard and stressful to think about. I don’t know what I would do if my boyfriend didn’t have the job he does and wasn’t able to support us financially. I am able to pay my share of things, but some months I just can’t make it work even when I have saved money. It’s so important to feel like you can be financially supported and if not, that is an added stress to the mix of everything !

  • #18991
     Bonnie 
    Participant

    Beverly, I know my experience isn’t typical but I wanted to inject a little bit of hope into this conversation. I was diagnosed with pulmonary hypertension 13 years ago. I had a good response to therapy and was able to continue to work mostly full-time until I chose to retire six months ago. My fatigue and shortness of breath improved on therapy but it was a slow, gradual process. I had to give up some activities that I loved, I became more protective of my time and I learned to pace myself. I am grateful to be doing so well. My suggestions are be patient and give your treatment a chance to work, discuss working with your doctor and consider filing paperwork for intermittent FMLA for those days when you need to take off.

    • #18995
       Jen Cueva 
      Participant

      Thank you, Bonnie, for sharing your experience. It seems like your treatment is working, I hope this continues so you’re able to continue your work.

      It is definitely stressful, I’m sure when you’re the one working, Beverly and Steve! I hope you both can adapt with your med regimen as you figure out what will be the best solution for you.

      Steve, do you have mechanics working for you? I was wondering if you could supervise or lighten your physical demands in some ways.

    • #18999
       Brittany Foster 
      Keymaster

      Bonnie,
      Really good decision! As a school teacher before, in my district teachers could “donate ” some of their sick days to teachers who had to be out for certain medical reasons for any extended amount of time. I was always pretty open with the teachers that I worked with and the administration so nobody was thrown off guard when I had to take sometimes a few weeks off at a time. I was lucky that they were so understanding and very supportive but I realize not all work environments are the same.

      On a happy note, I’m so glad that you found improvement in your symptoms even if that meant having to “stick it out ” in the beginning. It’s always hardest to adjust to different medicationd and therapies at the beginning but usually it does get better with time! Your suggestion of FMLA is a good one too!

    • #19043
       Beverly 
      Participant

      Thank you Bonnie for your insight and suggestions.

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