Well I have to say I'm very frustrated, a bit depressed, and honestly getting angry. As I broke down in my last blog of all the issues going on - yet another has popped up. I had am MRI of my lumbar (lower back) because of the findings the EMG indicated of my leg. The MRI definitively indicated a very rare disease called Epidural Lipomatosis (EL). EL is actually so rare there is hardly any info to be found on it via the internet. What is happening is a 1/4 of my spine (section T12 Vertebrae to Thecal Sac ) are masses of tumor like fatty tissue compressing the nerves and narrowing the Thecal Sac. This is causing painful back pain, leg pain, and unfortunately weakness. The main treatment for this is spinal surgery - something I can't have due to my paralyzed diaphragm and liver failure. I see the neuro muscular doctor again on Tuesday May 21st, and then a spinal surgeon/specialist upon referral.
I truly am having a problem wrapping my head around all this. I just do not understand how ONE person can have so much fraking wrong with them; it seems like a big cosmic joke. My father and I are currently looking into an adjustable bed, a chair that rises up so I can get out of it, and home nursing care. I am also facing a motorized wheel chair, as the nerves and narrowing worsens from the masses. Eventually my legs will be so weak I won't be able to use them.
I know I've said it numerous times but thank you so much to everyone for the supportive, sweet, caring comments. The outpouring from people has truly been moving - and thoughtful. I will continue to make updates as I can. I say goodbye for now ... wishing everyone the best. -J
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Good bye.
4 years ago
Wow Jason I'm sorry all this is happening. You are such a strong person. My prayers are with you. God bless.
ReplyDeleteJason, I genuinely can't fathom what you're going through, the fact that at the end of the blog you thank everyone for their support shows how much of a kind heart you have. I'm sorry that all this is happening to you. I hope that some good news passesyour way x
ReplyDeleteI am so sorry Jason, I know this is daunting, You are still Jason, albeit it may seem like you are ever losing touch with who you are. You ultimately will not, lose yourself. You are NOT your diagnosis, you are you. Jason Leitman. No matter what happens physically, you are at the core Jason, and will always be. Do not allow your symptoms and diagnosis to take over your identity. I know this is hard. I have severe hemorrhagic Crohn's and oxygen dependent emphysema, due to premature birth of 1 lb 11 oz in 1975. The technology available at the just opened NICU at our regional hospital and God's grace saved my life, but also caused massive lung damage, as did the next few years of constant pneumonia based intensive care hospital stays. I first having life altering symptoms at the age of 27, breathing wise. And official diagnosis came at age 30. I have had Crohn's since 19, I am 36 now, and I lost my mother to a severe Crohn's hemorrhage that ultimately took her life, far too quickly at age 65. Both illnesses, are difficult and life altering. I at times am limited to my bed, for days, and not much farther otherwise, due to the tether of my oxygen. I can't climb stairs without being absolutely winded and having to completely rest and nap after climbing roughlhy 6 steps. I am 24/7 oxygen dependent, since the age of 33, and am now as of this past year able to use it at night, and get by in my day without it, for a few hours. If I have a cold, I am 24/7 oxygen dependent, and most likely hospital bound, as they morph quickly into pneumonia that takes weeks upon weeks to recover from. And causes me to have to start from scratch in breath therapy, and to build up some stamina as I go back to zero. But after all of this, that is completely incurable. I will am grateful. I am still Becky. My personal self and essence is still the same. I have lost sight of myself during some rough physical times, but I have made an effort to find myself. Who I am without illness. That and God's grace is what keeps me going. It's easy for me to lump and equate my esteem with my symptoms and illness. But I am not, a disease or a symptom. I am a person. I am Becky, and Becky has to continue despite everything else. Otherwise, I would never have the gumption to want to move into the next part of each and everyday. Becky Connell
ReplyDeleteI am going to reply to your comment - I just haven't been able to - but I fully intend on it. Thanks so much for sharing your story - it really hit home. -J
DeleteWishing you all the best ♥
ReplyDeleteIWY <3
DeleteIWY 2 <3 :)
DeleteJason, could the EL be related to the Crohn's in some way? Crohn's is one of those systemic, immunological conditions with lots of weird effects. I looked up your case in NIH's pubmed (I do research in science). Here's a report of an 8 yr old girl who had Crohn's disease from 1.5 yrs old, and then developed EL after steroid treatment for the Crohn's: pubmed abstract here.
ReplyDeleteThe second thing I want to bring up is that I appreciate your need for an adjustable bed as I went through the same. Aim for one that is not too expensive (less than $1K I hope), but has enough articulation to relieve the pressure and make it easy for others to give you a hand. Something like the short list of beds on this page here.
Unfortunately no - the EL in my case is not caused by Crohn's. I have never really been on steroids cause of such adverse reactions for the few days I was on them back in 1999. Most likely it is a genetic mutation, or unfortunately cushing disease (syndrome). Thanks for the tips on the bed. I found 2 stores locally in Cincinnati that supply beds for a reasonable price. Plus both stores take medicare and medicaid and my doctor has supplied an order so it shouldn't be an issue. I am also working with a patient advocate to help with the process. If not - the prices are reasonable enough to pay out of pocket. Thanks so much for the thoughts though!
DeleteIt's bad enough having Crohn's... All the other "weird" maladies/problems stem from the "remedies" the doctors give us. This I am fully convinced about. I am so furious at the Pharmaceutical organization. I really wish you, Jason, all the best from my heart.
ReplyDeleteMaurizio
I hate to hear this, Jason. But I'll be hoping for the best for you!
ReplyDeleteJason, I am so terribly sorry that you must go through so much suffering. I too cannot fathom this. I will be praying for and I mean that. You are truly in my prayers. Stay strong, keep fighting, and know that you are cared for and loved by many.
ReplyDeleteHope you feel better soon dude. I know I joke quite a bit in my own blog about Crohns but it really does hit home at certain times just how damaging it can be.
ReplyDeleteHi Jason, do you think it's possible you have Lyme disease with co-infections? It might explain your different symptoms since it does attack all the body organs. Lyme is a clinical diagnosis made by a LLMD (Lyme Literate Medical Doctor) and many people get false negatives when tested. I have Lyme and had many of the symptoms you have. I'm in treatment and am improving.
ReplyDeleteJust stumbled on your Blog. I have had Lipomas in my legs, and have Crohn's as well. Is the relationship strictly related to steroid use or is it due to the Crohn's? I am so sorry that you are having back pain on top the Crohn's issues!
ReplyDeleteHi Jason,
ReplyDeleteSo sorry for all that you have gone through.
I suffered with Crohn's Disease for over 10 years until I crushed it by juicing, eating a plant based diet and not eating anything that did not give me the highest nutritional food value for my body.
I learned that "you are what you eat". And I discovered how to go about getting rid of this nasty Crohn's Disease.
It takes practice and sheer determination, but it can be done. It only depends on the person's willingness to change. To look outside themselves and just do it.
I hope that you have found out how to ease your medical pain. And that you are getting healthier each day.
I hear you, I have so many problems with my body, from chronic pain in my right side which I call my hip into my pelvic. I have pain in both my knees and on top of that I have pins and needles in my right leg most of the time. My feet swell when I'm sitting not crossing my legs and it doesn't take long for them to swell when I stand.my back hurts and I recently went to the hospital because my spine hurt so much I couldn't take the pain anymore. Of course they could find anything wrong with it they did 3 test and nothing. I have pain in my neck in my shoulders in front of my chest I touch it hurts in my arms in my wrists I get cold feeling and in my hand pins and needles not coper tunnel they said I don't have that. I have migraines and then some. So I understand your pain I can't understand why they my doctors don't know what's wrong with me I've had chronic pain for 6 years and nothing they don't know what's wrong. It's even worse seeing I live in flordia and medical insurance here sucks. But I have myfaith in God. God bless us and take care of yourself
ReplyDeleteHiv 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...
ReplyDeleteUnfortunately there are a lot of AIDS/Herpes denials on Herbal cures still out there. I did research on them after I was tested HIV/Herpes positive I was so worried am I going to die soon. I continue my search again on herbal remedy for Std, then I found lots of testimony on how Dr Itua Herbal Medicine Cured HIV/Aids, Herpes Virus,Copd, Hepatitis,Shingles, Diabetes,Epilepsy,Infertility, On websites sharing their testimonies, which made much more sense to me. All the authors pronounce Dr Itua As a man with Good Heart, I pick interest in their testimonies and I contact him about my situation then he gave me procedure how it works, I proceed after one week he courier his Herbal Medicine to me and instruct me on how to drink it for two weeks to cure. I receive His Herbal Medicine so I drank it for two weeks as I was told then after 2 days I go for a test I found out I was cured from HIV/Aids & Herpes Virus, I pay homage to him 2 months ago to his country to celebrate with him on his African festival which he told me it usually happens every year. I know there are lots of (HIV)/Aids&Herpes Virus denials of Herbal Remedy movement the same few doctors and they represent a very small faction of the community. I could have died because I refused Natural Herbs Cures for so long, but luckily, by the grace of God I am alive to tell my story. Contact Info...Whatsapp Number...+2348149277967,Email...drituaherbalcenter@gmail.com/My Instagram Username...avat5634 Just in case you need someone to talk with.
ReplyDelete