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