Wednesday, May 16, 2012

How Can One Person Have So Many Medical Issues?

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

17 comments:

  1. Wow Jason I'm sorry all this is happening. You are such a strong person. My prayers are with you. God bless.

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  2. Jason, 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

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  3. I 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

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    1. I 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

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  4. Wishing you all the best ♥

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  5. Jason, 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.

    The 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.

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    1. 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!

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  6. It'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.
    Maurizio

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  7. I hate to hear this, Jason. But I'll be hoping for the best for you!

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  8. Jason, 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.

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  9. Hope 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.

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  10. Hi 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.

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  11. Just 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!

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  12. Hi Jason,

    So 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.

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