Update!!

Hello everyone.

I would like to take a few minutes to update you on my health. My last MRI and appointments brought up a few questions that my doctor felt needed to be address further by a few specialists: 1) the pain in my right hand due to the tumors growing in the palm on the pinky finger side and 2) my vision as I was (had been at that time) seeing colors frequently during the day. Of course we all see colors, but this was like going from being outdoors in the snow on a sunny day with no sunglasses on to going indoors–that funny green color when your eyes are trying to adjust back to the dimmer light. That is the best I could explain it, but they knew what I was talking about. So appointments were set on November 1st to see a doctor on the Pain Management team (for my hands) and a neuro ophthalmologist about my eyes.

The doctor concerning the pain was very nice. He reminded me of Mister Rogers. 🙂 He listened to all my pain problems and the conclusion came to that there is not much that can be done about the tumors in the hand, except keeping the pain down so that way I can still use my hand as normally as possible without cringing in fear of huge pain every time I go to open a door or pull out a chair or squeeze my shampoo bottles. I have already been on a pain medicine for a while now to help with the pain spasms, but I was given another prescription for a different pain medicine to help with these new different pains. The plan is to see how well this new medicine works on helping my pain (I mean it won’t all go away, but if it keeps it down so I can function that is good) and see how tired it makes me (I also don’t want to be a walking zombie. Been there before, not fun!) Next time I have doctor appointments, if I am not satisfied then there are two other pain medicines to try. So that is all very hopeful. 🙂

At my eye appointment, there were several things that we discussed. For one, my eyes were extremely dry and scratched. So I started eye drops to help with that. 🙂 And two, after they dilated my eyes, they found that my optic nerves were swollen. So, considering my case, the doctor said it is a possible many things, but most important: there is extra fluid in my brain and something is putting pressure on my optic nerves. Then it all gets complicated from there…you don’t know what tumor(s) are pressing on the optic nerve–it could be from the any tumors in the brain or if it could be from the tumor in the spine at the C-3 to C-7 area that is causing pressure and maybe blocking the fluid flow…many different causes. The most important thing was to get the excess fluid out so my optic nerves go back to normal and thus, I stop seeing excess floating colors throughout the day.

I started this medicine that helps soak up the extra fluid in the brain. I already notice a big difference! My eyes are doing much better! I have not seen much color since I started it–only one or two times compared to seeing it everyday all day long like before. The main side affects of this medicine is that it would effect the way carbonated drinks taste…they would taste more metallic. I totally forgot that at lunch last week and pulled out a Cherry 7Up to go with my lunch. I took a sip and about spit it out. I was like “Ugh this is so nasty! Tastes like metal!!!” LOL. I had to throw it down the sink and drank chocolate milk instead. Not drinking any carbonated drinks for a while is not that bad for my diet anyway, so no harm done. 🙂 I go back December 5th for an eye check-up.

And lastly, something that has come up that I have not discussed fully yet with doctors, but I am having much tenseness and pain in my neck and shoulder areas of my back. I think it is due to the extra pressure on the spine from the tumor that had more fluid shown in the last MRI. The new pain medicine has been helping relieve some of that pain. I have to watch my posture as I have been bending more like a person with osteoporosis with my neck strained out as standing up straight causes pain. My parents and I sat down and got a few things from different websites to help with different issues I am struggling with in maintaining independence. All these things are for people who live with chronic pain and weakness. Mom found a rice pad jacket, and it has been so helpful. All I had before was a little 4×6 size pad that I used. The jacket helps release some pain and tenseness in my shoulders. It is comforting. We found some silverware to help me for when I have to cut things, as gripping silverware now really hurts my right hand. Dad helped me find soap dispensers that I can use for my shampoo/conditioner when I shower. We found a device that helps me open my gas tank (right now I use a pair of pliers), a device to help me squeeze my eye drop bottle so I can put my own eye drops in, and I found big pens to write with at the Dollar Tree. All these things out there and available to help maintain independence and I never realized it.

I told my mom the other morning that I felt this time with these changes in my body, we did something about it. Not like we didn’t before, but this time, we took action to find ways to help get around the obstacles. And it was exciting. 🙂 And just the thought to know that I am not alone in this. I may be one of few that has NF2 but there are so many different factors and diseases that lead to the same side effects or weaknesses. Someone has been down this road before me, because these things are available for my use. That is such a blessing. My ten years are coming up in just a few days–ten years ago when I first found out the news that I had NF2. And I thought I was going to die. Now I see, God has only made me so much stronger by His strength. I really can’t explain what I am feeling right now about it–I’ll let you know in a few days. 🙂

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