fatigued

Posted by boredsilly @boredsilly, Dec 15, 2017

After 3 stents, cardio inversion, pnemonia, pacemaker, nebulizer, various inhalers, I’m still fatigued-quit the nebulizer for a day as I thought it was not working, I went back to it today, Better than nothing. Any suggestions, as I’m going nuts just sitting around-good thing I have a caring spouse!!!

@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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My first name is Paula. I did apply for disability a few weeks ago. I have also had arthritis & fibromyalgia for about 20 years. My pulmonologist said he feels I have about a year or so to live after all of my tests and open lung biopsy and pneumonia twice in 30 days. I am going to Mayo Clinic in MN in a month just to see what options they may have. I am single with no significant other so I do work but have really struggled to make it full days due to fatigue and some days just feeling sick.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Paula, thank you for sharing your story. You are in a tough place. You do seem to be making some good choices. I hope your trip to Mayo Clinic will result in some new ideas for you. After two rounds of pneumonia no wonder you are super fatigued! Blessings to you and may you recover some energy in the days ahead.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Hi Paula:
I am glad that you are going to Mayo
Clinic for their opinion. The one thing I love about Mayo Clinic is the many brilliant teams looking and commenting on my tests and finding new paths to better my quality of life.
Lung disease is not glamorous and is a very lonely disease. But with that said, I have found the overall support at Mayo to be healing in many ways including the relationship between my mind, body and spirit healing capabilities!
I hope you will stay connected and continue to share your journey with everyone on Connect. I’m thinking of you and will keep you in my prayers.
Also, Dr Amit Sood has some amazing insights on healing and quality of life avenues we can take on our pulmonary journey.
linda

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Hello Paula
You will be in my thoughts and prayers. Prayers also that the doctors have the options that are best for you and a speedy recovery from your late pneumonia and fatigue. God Bless.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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I can’t say enough how much I appreciate all of your kind words and prayers. You have no idea how much it helps to know that the things I go through with this disease ire “normal”. I try very hard to keep a smile on my face and know that every day is truly a gift as i know without some sort of miracle my time will be limited. I will keep you updated on my journey.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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@ppeschke , Hi Paula. I am sorry that you feel so rotten. Most of us here have been in your shoes and have pulled out of it. Hopefully, you will too. May I ask why the doctor told you that you only have a year or so to live? And why was it necessary to do an open chest biopsy?

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Well i was initially diagnosed with heart failure & after 2 different cardiac caths and pneumonia 2 times in 60 days I had a 2nd pulmonologist say he thought I had a long disease but that there are several different types so I’m order for them to properly treat me he felt they needed to do the open lung biopsy to really get some answers. They then sent the biopsy to Mayo for further evaluation. I aIred 3 weeks for results.

When I want back to my original pulmonologist his nurse had called the week before and given me the general diagnosis so when I want to my pulmonologist a week later I had some a lot of ready and research and I had my head around things and we discussed in detail transplant and Esbriet. He said from Sept. to Nov. my lungs were progressing quickly and with my syptoms and weight loss and breathing tests I would not have 3-5 years. I point blank asked…is it not like a year or 2. He said he felt much closer to a year.

So…that leads me to now. I go to Mayo Clinic Feb. 12 and have no idea what they will do or tell me there.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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@ppeschke, Thank you for sharing that. I still do not understand why there had to do an open chest biopsy. Why couldn’t they do a bronchoscopy and get the biopsy that way?

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Well, here I am againwent off the wagon, ate 4 jolly rancher candies, nnext morning I thought I would pass out, lot of fatigue , deos this tell anybody any thing? Diabetes, maybe>

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@boredsilly Yes, it does tell us something. In spite of the taste, Jolly Ranchers can be a downer, even without diabetes. Get your A1c checked, and you will know what to do next. Probably, lay off the JRs.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Hi Paula,
My prayers are with you as you embark to Mayo Clinic. I have chronic pneumonia for 11 years and I completely understand your fatigue. I live in Ft. Lauderdale Florida and I can’t find any docs that have experience dealing with chronic pneumonia. I will read your messages as I have hope that you will get a treatment plan that is tailored to address your specific needs. I’m an RN, CCM (on disability at this point) It’s so hard to be the patient when you know more about your illness than a dozen docs. God Bless you and good luck. Remember no MD can predict with accuracy how long you or me will live. Only God knows
TDLYNNE

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Paula
I would think that you would be able to get disability. Another connect member made a good suggestion, your docs must be included and involved after all they sign the paperwork and write a brief letter on your behalf explaining why you need disability. I was able to get disability with my sisters help, I never hired a attorney but if you are denied hire a disability attorney. Best of luck to you.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Thank you so much for your words of experience and your advice. I truly do appreciate you sharing your experiences. At this point I am completely open to advice and suggestions. I have applied for disability and at this point ss had set up a phone call for and they are asking for W-2’s and income verification. I was taking that as a good aign? However, with the government shutdown that will be on hold.
I’m applying I didn’t have to go to my dr’s but rather give all the names and addresses of all of my dr’s and facilities. I’m told from others that they then get my records.
I guess we’ll see where this goea. I will post my disability claim status as it changes.
Thank you and I wish you peace. Blessings.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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Thank you for your words of wisdom and kindness. You are exactly right. Only the good Lord knows when it’s our time.
I have trouble daily getting out of breath just talking or sitting or laying down. I will keep you updated on my experience at Mayo.

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@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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I know very well how difficult it can be when we have difficulty breathing. Have you looked at Dr Amit Sood’s TED Talk about the body mind connection? Or any of his online free paced breathing apps?

After my lung cancer surgery my husband
stood by my bedside and said, “breathe””breathe”for 5 hours.

After returning home I was sent a Paced Breathing dvd & work book. It taught me how to breathe. It relieved my anexity and helped me relax my nervous system as it connected my body, mind and spirit.

Stress Free Living is a book that also helped bring me back from the Brink of my life and to this the lessons remind me to
slow down and reconnect my Mind Body & Spirit. I have better control of my breathing. I now clearly understand the value of taking time out in a constructive and helpful way.

All my best, I’m sending you a big cyber hug.
linda

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