fatigued

@boredsilly Hi, again. As I said before, I suggest you switch to a hematologist, one who is either with Mayo or Sloan Kettering or such, or will arrange to have their labs do the testing, and do a full protein deposit workup, including a Bindings SERUM FreeLiteChain assay, a 24 hour proteinuria collection and assay, and whatever else the Big Clinic doctor, such as Martha Grogan at Mayo MN requests. Unless you have one of the more experienced and equipped labs do the work, you might as well stick yourself with a straight pin, lick off the drop of blood and see how it tastes. It is either have your doctor work with the Big Lab, or go to the Big Lab yourself. It is your choice.

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?

Dr. prescribed amox/k clav 875-125mg & furosemide 20mg, so far no good results

@ppeschke It is hard to say if your would be granted disability. But there are two comments I would make. First, you will never get it unless you ask, with your doctor's support. And second, if you are denied, ask again with the support of a good attorney. The WH has said they want to kill disability, so go after it now.

@ppeschke , Hi there, do you have a first name? If you have not applied for disability, I'd advise you to do it today if you have not already done so. You can do it online. Once active, they will instruct you what to do next. The sooner you do, the sooner you will get it. But, you do want to be in the system ASAP. I was approved back in 2007 and had no trouble getting it. Fortunately, the breathing test is pretty cut and dry. You either ARE bad enough to get approved or you are not. Plus, what you have is a progressive disease, meaning it has the propensity to get worse over time. My doctors encouraged me to quit the workforce as to not expose myself to other people's germs, i.e. colds and flu. My doctors said I would last longer in life if I did not add job stress to my disease. I was fortunate that I had a husband to help with financial cost of living, plus, I was lucky enough to inherit a home owned free and clear which I made into a rental for added income. You are allowed to work part time, but the pay cannot exceed your monthly benefit.

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.

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.

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

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.

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.