Sunday, September 16, 2012

An Update, a Return, and a THANK YOU!


Hello Everyone ...
I wanted to first off say thanks everyone for all the continued support, and kindness. It is the amazing people in my life (my amazing father, and incredible friends) who have helped keep me positive, and helped keep (if not increased) my strong drive to fight. Since discovering I was in end stage liver failure in Oct 2010 it has been a tough road of up's and down's. While being worked up for a liver transplant some issues, and eventually (finally) some diagnosis's happened. It became harder and harder to breathe so the doctors thought it was a syndrome related to liver failure. After many (MANY) procedures and tests it was discovered the nerve to my diaphragm (phrenic nerve ) was no longer working - causing a paralyzed diaphragm. This causes pressure on my lungs, and de-oxygenation from the diaphragm not allowing them to inflate properly. I am on constant oxygen along with an external breathing device called an AVAP machine. It pushes pressure into my body forcing the diaphragm up. It has a very delicate sensor in it that changes pressure depending on my breathing. I only have to use  it when I feel tight, short of breath, and always when I sleep. After three sleep studies the results were disturbing - showing I stopped breathing around 130 times a night. I was also never entering REM sleep causing extreme fatigue.
As time went by I started developing other symptoms of what seemed like nerve issues. I was getting contortions along with muscle seizures. They tested my leg which showed a great deal of abnormalities; an MRI was then performed of my lower back. The MRI showed an incredibly rare condition called Epidural Lipamatosis (EL). EL consists of many hard tissue masses which form in the body - but extremely rarely in the spinal region. The masses are crushing the nerves in my back from the T-12 (mid back) all the way down to my Thecal Sac (right where the spine ends at the hip/pelvis). Due to the nerve damage it became incredibly difficult to walk, since the nerves in my spine which control my legs can not support weight anymore w/o buckling. I have been wheel chair bound a few months now. I also moved into a wheel chair accessible apartment; something that has made my life much easier as I have access to everything.
The kicker unfortunately is due to the paralyzed diaphragm surgery of any kind is out of the picture. The transplant team and other doctors agree that being int-abated during surgery would lead to very bad results. I would either never have the tube removed, and in the case of the transplant not survive the surgery. I have been taking care of myself, and the doctors follow me closely via blood work and frequent check ups.
The time will eventually come where a serious decision will have to be made ...but I am nowhere near there right now. As I mentioned earlier I have good days and bad days ...but truly the good outweigh the bad. I refuse to roll over and give up which has helped keep me here. I am just grateful that through all of this I have some truly great experiences, and I know it could always be worse.
I have returned slowly to The Crohn's Disease Support Network (CDSN) on a regular basis...something I am very excited about. I also have been offered some truly amazing opportunities (more to come on this at a later date...once everything is cemented). It has been fantastic to return to CDSN! The warm responses have been incredibly humbling, sweet, kind, thoughtful and so much more!
I hope this message finds everyone well! I have rambled on for so long you probably all need a nap after reading this haha. Thank you again from every fiber in my body!
Always - Jason

16 comments:

  1. Jason you are such an inspiration; no matter what you are dealt, you keep fighting.
    I am so happy to see you writing again and back in with your baby CDSN-how awesome!
    I am so happy that you have so much support and I know from first hand experience, that there is nothing more divine than the joy, prayers and support of others.
    Bless you Jason....

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  2. lots of hugs and love pumpkin :* ♥

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  3. I am new here and have been getting to know you through your blog, it is truly inspiring. I am sorry for what you are going through and am humbled. It is so nice to know how many people care, that there are still so many good people in the world. We all need to support each other. Best of everything to you, my new friend.

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  4. Jason, thinking good thoughts for you. I'm sorry you've had to go through this. Crossing my fingers for you, and hope things go up from here soon. Wishing you the best, Sean.

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  6. Jason, you and your dad are very brave. I am so sorry to hear that your dad have had to undergo liver conditions. However, now every thing is OK. Bless you forever.

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  7. Thanks a lot, Jason, for your max effort on your blog!
    Jon
    http://goneglobal35.com/crohns.html

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  8. Hi Jason,

    That's my son's name, too! Hope you are feeling better. Everyone I have researched has seemed to battle this is so many different ways.

    I know what Crohn's Disease was like as well.

    I hated the non-stop vomiting which caused me to DIE in an ambulance in 1998. Fortunately, the EMT's restarted my heart, which is how I am able to comment here.

    In all honesty, I did not have to use prescription drugs or have surgery. I had a foot and a half of irritated small intestine that I had to get back to health real fast.

    So I used the Vegan Diet, juicing fruits and vegetables and worked my way back to eating solid foods again. Along with using some other supplements which totally strengthened my digestion.

    You can read about my story at :

    http://www.CureCrohnsDisease.net

    I hope and pray that your body is starting to heal itself and you are feeling better. I will remember you in prayer.

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  9. this is my blog about crohn's disease http://meumundocrohn.blogspot.com.br/

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  11. You are so strong to be going through all of this! It can't be easy, but I'm impressed by your good attitude and your way of keeping moving forward! I don't know very much about Crohns disease, but you seem to doing fairly well considering. I hope you continue being the upbeat person I see in your blog posts!

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    1. Thank you! I am fighting the good fight. I certainly have my bag days (who doesn't?!), , but I'm still here. I took some time away, but I'm back. I hope you and everyone continues to share my journey with me.
      All My Best,
      Jason

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  12. Hiv disease for the last 3 years and had pain hard to eat and cough are nightmares,especially the first year At this stage, the immune system is severely weakened, and the risk of contracting opportunistic infections is much greater. However, not everyone with HIV will go on to develop AIDS. The earlier you receive treatment, the better your outcome will be.I started taking ARV to avoid early death but I had faith in God that i would be healed someday.As a Hiv patent we are advise to be taking antiretroviral treatments to reduce our chance of transmitting the virus to others , few weeks ago i came on search on the internet if i could get any information on Hiv treatment with herbal medicine, on my search i saw a testimony of someone who has been healed from Hiv her name was Achima Abelard and other Herpes Virus patent Tasha Moore also giving testimony about this same man,Called Dr Itua Herbal Center.I was moved by the testimony and i contacted him by his Email.drituaherbalcenter@gmail.com OR info@drituaherbalcenter.com. We chatted and he send me a bottle of herbal medicine I drank it as he instructed me to.After drinking it he ask me to go for a test that how i ended my suffering life of Hiv patent,I'm cured and free of Arv Pills.I'm forever grateful to him Drituaherbalcenter.Here his contact Number +2348149277967...He assure me he can cure the following disease..Hiv,Cancer,Herpes Virus,Hpv,Pile,Weak Erection,Lyme Disease,Epilepsy,Glaucoma.,Brain Tumor, Cataracts,Macular degeneration,Cardiovascular disease,Lung disease.Enlarged prostate,Osteoporosis.Alzheimer's disease,
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  13. 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, Herpes, Schizophrenia,Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity Syndrome Fibrodysplasia Ossificans Progressiva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic,Diabetes ,Coeliac disease,Creutzfeldt–Jakob,,Lyme Disease,Epilepsy, ,ALS,Hepatitis,Copd,Parkinson disease.Genetic disease,Fibrodysplasia disease,Fibrodysplasia Ossificans Men/Woman infertility, bowel disease ,Huntington's disease ,Diabetes,Fibroid. disease,Lupus,Lipoid Storage diseases( Gauchers disease),Polycystic Disease.,Cerebral Amyloid Angiopathy, Ataxia,Cirrhosis of Liver,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic,HIV, Epilepsy, Infertility, 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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