Thursday, April 6, 2017

Zzzzzzz

     I have found myself sleeping a great deal more lately and I haven't been able to put my finger on just why that is. Rather than do research and freak myself out I reached out to my homies around the country who have ALS and asked them what their sleep schedule looks like. One dude is apparently Superman because he goes to bed late and gets up early. If I did this my poor caregiver would be mobbed by obscenities. Another buddy was completely different. He said he goes to bed when he feels like it and might not even get out of bed the next day until dinner. Mind you, these dudes are similar to me, relying solely on their caregivers for essentially everything.
     The last week or so I'm ready for bed at 7pm. It's definitely disheartening because the sun is still out and I know beautiful evening weather is just around the corner. Once in bed I rarely pass right out. My body stretches out fully, pressure points change, and I put on my space mask (aka my bi-pap). Once my space mask is on I usually get my cuddle on with the wifey, either watching How I Met Your Mother, Teen Mom, or MTV's: The Challenge, all awesome shows so don't bother hating. Once Michelle calls it quits we set up something for me to watch that will stream without needing to touch any buttons on my phone and will eventually time out around midnight when I fall asleep. Now in the morning, I'm typically awake by 9:30, so I clock about nine hours of sleep but sixteen hours of wearing my space mask that gives my lungs a break and chance to recuperate. Then, depending on the day, Emily or Michelle give me morning meds in bed, followed by leg and arm stretching leaving me in bed streaming something again for at least another 90 minutes.
      As I read that back that's a hell of a long time in bed. I wish my body didn't need that kind of recovery time. However, the moment I pity myself I think about the thousands of people with ALS who are confined to their beds all day, or who don't have a wheelchair equipped like a James Bond car to get around in. That's when I talk to God and ask him,  "how I can make an impact today?" As I've stated before in this blog, by the Grace of God I will use my wakeful hours to advocate for others with ALS and the less fortunate, I will raise money for a cure, even if I don't get to reap it's benefits, and most importantly I will spread love and joy through God's word, loudly and tenderly right before I close my eyes.


6 comments:

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  2. MY HEALTH IS RESTORE
    i am so happy to share this testimony with the world because generally there are so many doubts about the cure of hpv and cancer This is real take it serious, i am so happy that today i can give this testimony to the world and also help in saving life of people who has been condemned for death just as i was ,who will believe that herbs can cure hpv and cancer completely from the body, i never believe that this will work, i have spend a lot of money getting drugs from the hospital to keep me healthy, it got to a time that all i was waiting for is death to come because i was broke and i already have strong outbreaks from the hpv, one day i was going through the internet asking questions online just to know more about the latest development in the medical sector to see if there is still hope then i stumbled on a post about about this great man called Dr. Ehiagwina through a publicly made a testimony on how she was also cured of ALS by this herbal doctor who is well known for his strong ancient herbal practice at first i doubted both the woman and the doctor just as so many that see's this post would doubt because medically it has been proven impossible but later i decided to give him a try so i emailed him I did not believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepare herbal medicine and sent it through Courier Service for delivery, he gave my details to the Courier Office. they told me that 3-5 days I will receive the package and after receiving it, i took the medicine as prescribed by him at the end of 13days that the medicine lasted, he told me to go to the hospital for a test, and i went, surprisingly after the test the doctor confirm me hpv negative and cancer disappear i thought it was a joke, i went to other hospitals and was also negative the doctors were speechless and i said it was a miracle, thank you sir for saving my life even if you cannot see this post i shall never stop testifying the impact you made in my life by restoring back my life when i was being stigmatized and even avoided by family and friends , I promise I will always testify of your good works. Dr. Ehiagwina contact: ehiagwinaherbalhome@gmail.com OR call +2348162084504 you can also add him on whatsapp.

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  3. It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through living with Herpes but once again, God is bigger than my stubbornness and broke through that outbreak cold sore and all I had Genital Herpes. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I was just waking up like is this how life going to end this temporary herpes outbreak “fuck everybody with herpes if you know what I mean” but let's be honest here...It is a cowardly to say no to herbal medicine. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of herbals made or taking a bold step especially when it's come to health issues and getting cure. So many young men/ women tell me over and over that Dr Itua is going to scam me but I give him a try to today I feel like no one will ever convince me about herbal medicine I accept Dr Itua herbal medicine because it's cure my herpes just two weeks of drinking it and i have been living for a year and months now I experience outbreak no more, You can contact him if you need his herbal medicine for any such diseases like,HIV,Epilepsy Infertility, Herpes, Hepatitis, Schizophrenia,Cancer,Fibromyalgia,Fluoroquinolone Fibrodysplasia Ossificans Progressiva.Dupuytren's disease,Desmoplastic,Diabetes ,Coeliac disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic, Love Spell,. Email..drituaherbalcenter@gmail.com then what's app.+2348149277967.... My advice to any sick men/women out there is simple... Be Always an open book. Be gut wrenching honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one..

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  4. My little princess is so beautiful) I underwent using Dr Itua Herbal Medicine. I had a miscarriage 7 years ago. I still can’t hold back my tears when I remember that horrible period of my life. After my loss I couldn’t get back to life for a long time. I’m glad I have my husband. He gave me support I needed the most. Together we can do everything! We wanted to have kids for a really long time. We’ve gone through a lot, but if you want something badly, you’ll get it! I had to search online on how i can use herbal remedy due to my infertility then i came across Dr Itua how he cure all kind diseases and helped a lady from Kansas City to get pregnant so i contacted him on email,He gave me some guild lines to follow he also send me his herbal medicine via courier service which he instruct me on how to drink it for two weeks really i did and after 7 days of having intercourse with my husband few days later i noticed my period didn't come then i decided to go for check up i was pregnant with a baby,Dr Itua is a genuine miracle man..I've got pregnant from first attempt. We were over the moon! Our girls were born in May 2015. We've just celebrated their first birthday. Finally joy and peace came to our family.Here his Email/Whatsapp Number...+2348149277967/drituaherbalcenter@gmail.com He cure the following...infertility Liver/kidney Inflammatory,Diabetis,Fribroid,

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  5. Good day viewers , my name is Jessica Campell ,Am here to let the whole world know that I was diagnose of herpes 7years ago were all hope was lost and I had nothing to do about it,I just accepted the faith that one day I will cure of this disease and I just pray everyday for a helper and one day my sister introduce me to a great herbal man called Dr. CHUKWU MADU HERBAL HOME that she saw on internet,well, I gave him a try on his email. dr.chukwumaduherbalhome@gmail.com, I was not fully convinced until he sent me the herbal medicine which he ask me to take for two weeks I took it with faith and i went for a retest in different hospitals and today am cured of this virus and am also using this medium to let all those having STD,like herpes and the rest not to give up,their is a man who can cure you,his name is Dr CHUKWU MADU , contact him on  dr.chukwumaduherbalhome@gmail.com  or  contact him on his WhatsApp mobile number . +2347030936239.

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  6. I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
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