What My Days/Nights Look Like

8 Aug

1746-custom-ribbon-magnet-sticker-lyme+disease

What My Days/Nights Look Like

Here is my brief but true day in the life of Bryan (Lyme Inside).

  1. Wake up around 5-6pm
  2. Take my “wake up meds”
  3. Go to the living room and sit in my recliner
  4. Eat dinner
  5. Take “after dinner meds”
  6. Watch TV and get on social media or text back friends
  7. Take “nightly meds”
  8. Go back to bed and watch more TV, take more meds then hopefully fall asleep (sometimes I sleep 30 min to 2 hours)
  9. That’s pretty much it. I rarely leave the house maybe once a month for doctor appts and to get meds.

 

For my newer followers; I have been disabled since 2009 and haven’t driven a car in 5 years. Lost my good job due to being bedridden and went bankrupt 5 years ago. I have been in a wheelchair but currently and thankfully I can still walk. I get sicker in the sun so I stay indoors and don’t go in the backyard much to see nature. I have very little human interaction in person mostly from the fact I will get ill from someone since my immune is so low and I feel sicker when there is too much noise and stuff going on. I have been treating my chronic late-stage lyme for 3 years and tried almost everything except stem cell or highly-expensive treatments. I was misdiagnosed for 28 years and my Lyme and co’s are 31 years old as of May. I have not progressed much and still have hundreds of symptoms. I have seen numerous well-known lyme literate doctors including LLMD, holistic, nature-path, specialists and PCP’s. I have many other illnesses and my spine is a mess due to lyme. But over the years I have learned not to take anything for granted and enjoy the little things in life. I use my illnesses to try to educate others and inspire others going through their own battles. Life is short so try your best to smile even through all the madness and pain. One day the truth about lyme will open the worlds eyes and maybe we can get some better treatment and be treated better at doctor offices.

 

 

 

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6 Responses to “What My Days/Nights Look Like”

  1. JB August 8, 2014 at 2:25 am #

    Have you read this book regarding Lyme and treatments ? – why can’t I get better – http://www.cangetbetter.com
    I hope you can get some improvement from your symptoms

    • 49er Bryan August 9, 2014 at 11:55 pm #

      Yeah I think I own it but I am unable to read anymore. I haven’t read a book in 5 years so I kind of looked through it. I have tried pretty a lot of the stuff they recommend in the books but no luck. My body is all messed up lol. Thank you for the link I will look it over

    • 49er Bryan August 9, 2014 at 11:55 pm #

      Yeah I think I own it but I am unable to read anymore. I haven’t read a book in 5 years so I kind of looked through it. I have tried pretty a lot of the stuff they recommend in the books but no luck. My body is all messed up lol. Thank you for the link I will look it over

  2. Christine August 8, 2014 at 12:30 pm #

    I really appreciate the insight into your day.

    You inspire me, with all you’ve been through.

    • 49er Bryan August 9, 2014 at 11:38 pm #

      Thank you. We have to stay strong and keep on going or life will go on without us. We are still relevant and worthy although most of us hit a wall and lose hope. Hope you have better days.

  3. Brian August 17, 2014 at 10:45 pm #

    Well 49er, my llnd prescribed me gammagard at my Saturday apt to take care of my low immunoglobulins. I need to call the pharmacy tomorrow morning to make sure it is ordered. I am doing the Sub Q, but I am going to do the first dose in office to make sure no bad reaction. I hope it helps. Feeling better past few days, taking saccharomyces boulardii for my c diff, start dificid tomorrow (the most expensive abx on the market) and I hope that works well to kill the germ. Vanco didn’t work and metronidazole only worked once. I am trying to find somebody to be donor for c diff transplant in case it comes down to that. My new GI doctor says I will be a good candidate if dificid fails.

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