Life With Sarcoidosis Is A Nightmare

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Life with sarcoidosis is a nightmare” – Six words that describes most people’s experience on a daily basis with sarcoidosis. Those are the words posted as a comment on my Facebook page by one of my Facebook compatriots, and they speak so much of the frustration she feels having this disease.

And although I do agree that for many, that is how their life feels on a daily basis living with a chronic illness, it’s not that way for me at all.

Don’t get me wrong, life with sarcoidosis is no bed if roses for me either, but I won’t allow it to become a nightmare. So I wrote a one paragraph reply to her statement, which I hope will resonate with some of you out there living a daily nightmare.

“Yes, it can be a nightmare, but you have to wake yourself up from that nightmare and turn things around at some time or continue to sleep through it. The choice is totally yours. The harder you push against something is the harder it pushes back. Sometimes the only way you can get the uninvited guest to leave you alone is to realize that they are not leaving, and leave the door open for their departure, but step out of the doorway and continue to live as best as you can, and hope that eventually they will eventually leave. We don’t realize that when we stand at the door arguing with them, not only are we blocking the way out for them to leave, but we stop living our lives. So try stepping aside for a bit, go clean up the house, and approach them from a different angle and when they aren’t looking, shove them out the door.”

 

4 Comments Add yours

  1. Diane Favier says:

    I am trying to get out of the nightmare by God’s help but I am not there yet and it has been a nightmare for me because I was misdiagnosed for almost a year despite that I had a lung biopsy that proved I had it in the lymph nodes of my lungs. I became sicker and lost my job and had to go on long-term disability and than I developed neuropathy in my legs and I fall and finally a doctor recognized I had pulmonary sarcoidoisis and put me on the strong drugs. I have been eating healthy and I saw a neurologist for the neuropathy who put me on the meds and sent me to a physical therapist and I did everything she suggested so I could go on small walks when she said I was ready I went on one and I fell and fracture both arms. I still have walked five miles but than my lungs started acting up again and I have to see if I need oxygen. I am working on having a better attitude and I am determined to walk trails again and work again so I have not stopped fighting this disease but having the fracture arms with everything else has been a nightmare to me!

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    1. dannysarcoid says:

      So sorry Diane – I to was diagnosed with Neuro-sarcoidosis in 07 of the Brain and spinal column – After years of drugs that had more side effects then the help it gave me – My wife found a company whose supplements gave me the strength and clarity and energy to fight this disease – I on oxygen at bed time and have a spinal cord simulator inserted for the horrific pain I have 24-7 in both legs – But you do what you have to do even if it means not being the person I was but BEING alive and doing whatever I can to fight this terrible disease – I found that taking a few products from this website ( Pharmanex ) – beyoungnhealthy.nsproducts.com – They are Cordy Max for lung function and. Lung strength – Vitality for energy clarity n sexual libido for men and women and Life Pac Nano for Anti-oxidants which is vital in fighting all disease and vitamins and supplements taking these products gave me my fight back and that’s so important in this struggle we face every day – God Bless you and You will be in my prayers

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    2. Basil Rene says:

      Diane, you are really having a hard time with this and I admire your perseverance. Keep your head held high. You are in my thoughts and prayers.

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