Hi everyone it's been a while since I've posted an update of what 's been going on. I hope everyone is doing well, and life is treating them right. In my last blog posted I mentioned an MRI of my lumbar indicated a rare condition called Epidural Lipomatosis. This is when masses form around the spine compressing it. In my case it is severely compressed from my T-12 down to my Thecal Sac (which is nearly completely compressed). The nerves are damaged to the point that the compression has effected the part of my spine that controls my leg muscles; my legs have become severely weakened and can no longer support weight. I have been wheelchair bound now for about 3-3.5 weeks. It was an incredibly fast change, but I am adjusting. It has actually made life easier because before the wheelchair I was using a walker, and basically dragging the lower half of my body. This was putting an immense amount of pressure on my back, and left foot - causing excruciating pain. The downside to all this is I need to now look for wheelchair accessible living. The condo I live in now I am restricted to the main floor - which only has one half bathroom. All the bedrooms and full baths are upstairs - while the washing/drying is downstairs. My dad and I are currently looking into places to live. On top of all that it just isn't safe where I am living now, plus my loved ones are concerned about my safety. My doctor also insisted on a nurse who comes to the house and monitors my health situations, since I have so many serious medical issues. I have also started physical therapy and occupational therapy so my muscles do not atrophy. It has been tough but the way I look at it is if I get better that would be amazing...if not then I adjust and life keeps moving forward; either way life must keep moving forward.
As far as the severe rigidity I was experiencing an Endocrinologist discovered my calcium levels were critically low, and my vitamin D was undetectable from a blood draw. Getting infusions and taking mega doses of supplements has incredibly helped. I hope to soon be on maintenance doses which I will probably be on forever. It is wonderful though to not feel like I am turning to stone. The muscle contortions and seizures though have continued. The doctors feels it is related to the nerve damage I have in my back, as most of the contortions are mostly lower body.
I know quite a few of you have been reaching out to people and asking how I am. I am incredibly touched and grateful - but please respect these people as they have a lot going on themselves. If anyone ever has any questions you can also always email me at CrohnsDiseaseSN@gmail.com It would greatly be appreciated if you take these methods instead of reaching out to others.
I can't think of anything else going on - but it definitely has been a long strange trip .... and my life has taken many changes in a short amount of time. I don't handle change well - so it has been challenging at times, but the support and outreach from many has absolutely made it a lot easier; I can't thank you all enough. I will update more as I reintegrate back into the normalcy of life, but it is going to be a slow process. I really am so grateful and wish everyone nothing but the best. More to come soon .... - J
The view from my hammock .... rough eh? :-P
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Thank you for sharing Jason. I think a lot about you and I'm hoping that they can piece together a proper treatment to help you find some kind of stability in your condition. You have many ppl thinking of you and caring about how you are doing. Your strength and attitude is a true inspiration. I cannot begin to imagine going through all this. Keep fighting my friend!
ReplyDeleteJason, as always, you are a marvel. I'm in awe of your courage and strength, and I wish you better times ahead. You surely deserve them!
ReplyDeleteSo glad to hear from you! Keep fighting and know that we're rooting for you.
ReplyDeleteSo glad that you are on the mend. Sorry you have to go through so much but at least the doctors have some answers know. I can't imagine what you have been going through, but stay strong. You have a lot of people behind you to catch you if you fall on the way to recovery.
ReplyDeleteI am so sorry to read you are battling so much, but I love how you keep on keeping on. It is inspiring.
ReplyDeleteI too have myriad health issues and they just keep coming. It's gotten to where I am afraid to say..."I've got plenty." It is like God says..."no you don't, not yet." So thank you for your strength and courage. Thank you for sharing the highs, the lows. Thank you for being an inspiration!
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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 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,Lyme Disease,Epilepsy, fibromyalgia ,ALS,Hepatitis,Copd,Parkinson disease.Genetic disease,Fibrodysplasia Ossificans Progressiva,Factor V Leiden Mutation ,Fatal Familial Insomnia ,Dupuytren's disease,Fibrodysplasia Ossificans Progressiva,Fluoroquinolone Toxicity Syndrome,Inflammatory bowel disease ,Huntington's disease ,Diabetes,Fibroid...
ReplyDeleteIt 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...
ReplyDeleteIt 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..