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An update to how I feel about all this now…

I haven’t posted much lately. Mainly because I haven’t felt the best. I have been weaning off my neuroton that I’ve been taking since 2006. This is nerve pain medicine since they said I have neuropathy. Well…I apparently don’t.

My numbness and tingling is from my MS. Last Sunday, March 9th, was my first day without it. It was rough. I was incredibly tired and in a bad mood. Poor timing on my part since it was spring break too. The good thing was that the kids were home to keep me moving, but the bad thing was the kids being home and needing me to keep going. I just wanted to sleep!! Anyways, all is good now. Friday night a little incident happened that reminded me that I need to slow down and take care of me mentally and physically. This is when Randy bought me beautiful flowers.

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My shots are still going good. They are still giving me the same site reaction of hot, red, and super itchy. I’ve tried lavender oil, cortisone cream and preparation h. I’m not sure they do much, but I still put it on. Next month I get to try the 40mcg dose!! That’s only three days a week that I have to do it!! I’m super excited. I hope it helps with the site reactions. I have had improvement with my eyes not being as sensitive to the sun, I’m off the neuroton, and my tingling is a little better. I really think this is all related to my MS. I’m hoping that my eye blood serum with end too!! Not that it’s bad, its rather soothing when I put them in, but the cost is there. I’ve read the blog posts that Randy posted in 2006….I’m frustrated. Here’s a couple posts Randy wrote:

“July 27, 2006
Thursday – Post Op
Becca is out of surgery. The great news is it was not a tumor in her spinal cord. If it had been, it would have meant that the tumor in her tail bone was spreading and they would have only given her six months to live.

The not so good news is that it was a lesion and it’s a degenerative type of disease. We don’t have a lot of answers right now which is very hard, but hopefully soon we will know exactly what it going on. She is in ICU and on a ventilator tonight to help her breath. Becca will need to get a LOT of rest. They aren’t saying it is MS, but they believe it’s something in that category. They are starting some other therapy’s with the blood by taking out the antibodies that are basically attacking her nervous system. They aren’t sure if it’s connected in some small way to the tumor in her tail bone or the spots on her brain. They might still do a biopsy of the brain sometime in the future.

I’m holding on and it’s a tough night for me. Please keep praying, He can help.”

“Friday PM August 4, 2006
So what do we have behind curtain #1?

Get out your pens: chongrogenic (it is not chondrogenic you google fans) chongrogenic osteoblastic sarcoma. It’s a level two tumor. Good luck finding it, it’s not out there. It’s a very rare tumor that is low-medium grade and malignant. So where does that leave us? Not sure yet other than the doctors are compiling information from library’s that specialize in cancer. The good news is it’s a very slow cancer and can be treated. From what we know they will wait a while (weeks) for Becca to get better and more strength before they start the treatments. It should be radiation, but chemo is not out yet.

So, that leaves curtain #2… a separate issue for now, a type of demyelination inflammation. MS is in this same group. MS can usually only be determined after multiple breakouts. This could be a one time issue, or it could happen several times. Only time will tell on this one. The treatment for this has been done with the steroids and blood therapy.

So, we will get more results from the MRI from tonight and the one of her head that will be done in the morning probably on Monday. But the current thing we are doing is working on getting her strength back and working with psychical therapy. We have to keep her spirits high and make her want to get better. The good news is we are talking about Becca. I know she has a huge team behind her and I know she can do it.

Thank you all so much and please keep praying… we are hoping the tumor hasn’t had a chance to spread yet and that she will get better quickly. We love you all!”

Why couldn’t I have read this sooner??!! I was diagnosed with MS, but no one told us after my chemo was done. I get it that they probably didn’t pass on that information, but come on. I could’ve been taking this medicine a lot sooner if I would’ve known!! I probably wouldn’t of had Adam though. That is the only reason I’m not beating myself up about it. I think Adam completes our family. There’s not much I can do about it anyways. I’m just glad Randy wrote it down in our blog.

During spring break we did get yard work done!! The kids were saying they were bored:)

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We also went to the movies. We saw Mr. Peabody and Sherman. It was super cute!! I’m so glad that Adam and Cameron are getting a little easier at the theater.

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Now onto getting my appointment with the MS specialist that met me at the Clay Walker event. She is leaving in June, but wanted to see me before she left. They called today and need to get special permission from her to schedule me. I can’t wait to learn more about this MS. I’m grateful for the answers I’ve had. I’m extremely grateful for patient family and friends who listen to me and put up with me:) Thank you!!!

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