Came back from leave about a week ago. Trying to get back to my volunteer related activities and other endeavors. I don’t know how often I will be on and won’t be available for all things. Living with Narcolepsy on top CRPS and the rest isn’t easy either and I don’t take medication to wake me up, so I do the best I can with that. It’s extremely hard to have so much going on and it seem so unreal to outsiders looking in, listening, reading my posts. I wake up at times and it’s takes me a few minutes to realize it’s not a bad dream, but soon enough I know it’s the ongoing reality. As some of you know, I’ve been sharing some of my daughter Kharisma’s story under blog posts “Taking a Break” and a little on FB. I just haven’t yet given any specifics. When she seen the Specialist yesterday, we were left confused. He stated he believed the hospital assumed the previous diagnosis due to the size and placement of the lesions on her liver, especially the largest which is resting at the side of the liver wall. He seems like a good doctor. I’m glad he’s reviewing instead of jumping right into invasive pokes. I will go ahead and reveal the first believed to be diagnosis now as he thinks it may be another type of cancer instead. The first was Epithelioid Hemangioendothelioma. I had a hard time with it.
For more information,
Towards a Proper Diagnosis and Understanding of the Pathogenesis of Epithelioid Hemangioendothelioma
Now he is reviewing her Biopsies, MRI, CT, Blood tests, X-ray’s and all records before ordering the repeat Biopsies. Now he thinks she may have Colon Cancer. What, how? I research everything I can get my hands on. While people can have Colon Cancer and not even know it and even perhaps have no symptoms, she doesn’t have any symptoms of Colon issues. Only the pain. Pain I know because of my own liver issues and removal of lesions with my second Gall Bladder surgery just 15 months ago. We’re still left without definite answers so treatment is still in the future. Many more appointments. She’s 26, our oldest and the mother of our 8 year old Grandson.
2 days after the injury to my right hand our 17 years old son Kurtis finally had his appointment at Shriners Children Hospital in Sacramento. We learned that his Degenerative Disk Disease was not the results of his brain injuries when he was 15 and diagnosed with DDD at 15, but instead Congenital Defects of the Spine. He was born with Spinal Stenosis and Spondylosis. We’ve known for 2 years that his 2 of his disks have thinned greatly and now we know they’ve (L2 and L4) deteriorated further with Neuropathy and that he also has a tear at S1. Yep, my heart broke again. He’s a 4th year Sheriffs Volunteer. Many awards. Even from Senator Steinberg and the California Legislature.
All I could do what tell him/post to him –
“Kurtis, You never knew you were born with it,
Go on like you still don’t. ~Mama”
I was born with Arthritis, too. I went on through life as if it wasn’t apart of me. I’m not saying it didn’t hurt, but the more you dwell on pain, aches, what you can do, might do, or have to rest from the more you give up on life.
I didn’t. I still played 8 years of softball and made sure that when I began working it was on my feet. Moving. All Kurtis needs to do right now is protect his back and spine by moving it or losing it. There are no options for surgery at this time and he will not be placed on any pain medication. He is strong and he has goals for the future.
Kharisma, while going through all this has been promoted at work and is seeming doing well. It’s always ‘seemingly” isn’t it?. We are fighters! We just hide most of it that’s how we go on. Emotions.
And then there’s Erykah, our daughter who is getting ready for her and her other half to move into their first home next week. A beautiful home. How can I not feel bad for her, I know she’s pained too, getting lost in all the medical health chaos of her family. She was our Army girl.
The human body when it reaches a certain point in pain will pass out, shut down, the human psyche will either hold on, break, come back, attempt, or kill itself. It’s emotions that take control of the mind. It really hurts to hurt. None of the above includes my husband, or myself. Not really. Not any of his medical appointments, PT, etc. And me, I’ve put mine on hold, I had to, my 5 lights will always come first.
So here we are the ride isn’t over, there’s still another story I haven’t shared yet, not in its entirety. When I do, I want it to help others. It may be later down the line.
That injury I sustained was without a single pain pill. I’m not saying it didn’t hurt or it isn’t hurting, I’m just saying (for me) I didn’t have to go there. #StrongerThanPain I still haven’t and on the 15th it will be a month. Vitamin C, Ibuprofen, deep breathing, meditation, focal points and going to my happy place in my mind where there is no emotional pain. Where there are no mis diagnosis’, and delayed help. Those lesions were found on my daughters liver 16 months ago, but she was dismissed due to no insurance (assumed). Or maybe just because it didn’t seem important enough at the time. My happy place where we’re all camping at Rumsey in Yolo County. Our spot for several years.
Change the direction of your mindset and you change the direction of your pain. ~T