I'm having a near-perfect day. It's cold and overcast, but the BSU-Wyoming game is on TV, and both sons are here watching it with me. Go BSU! A big roast is in the crock-pot for supper. A new catalog arrived in the mail. I am a happy lady today!
Here's a free Halloween image for personal use, compliments of Dover.
It's been a wonderful week. My youngest has been home on break from college, but heads back to the dorms tomorrow. My oldest son has had some time to drop in and visit this week, which has been fun. They're both spending the night. and I'm loving it.
I started sorting through some old photos, earlier in the week, I thought had been lost forever. They were safely in an album, in a storage box, that I'd shoved into the back corner of a closet. I definitely need one dedicated space for photos, but I have so many that it's very hard to do. My son suggested scanning all of them and putting them in the internet "cloud" so I'll always have access. But, what happens if that "cloud" disappears or malfunctions? Yes, I'm a skeptic! I may have to give it a try though.
I haven't been able to do any creative writing for a while. Just have a mind-block I guess. I read about a well-known author who took a long break when that happened to her. She just spent months reading every book she could get her hands one, enjoying the journey of other people's stories. Afterwards, her head cleared and she was able to get back to her writing. I thought it was worth a try, so I've finished two and a half books this past month. One is a collection of short mysteries, and the other two are the most recent Agatha Raisin mysteries by M. C. Beaton. I'm still not ready to write, so I'm splitting my reading time between The Perks of Being a Wallflower, Treasure Island, and another light mystery called Crunch Time by Diane Mott Davidson.
It's been wonderful being able to read again. I'm still doing the eye meds and drops, and still delaying the start of the new drug with the vision/heart risks. I just have too much living to do right now, so I'll think about it later on. For now, I'm just enjoying each day as it comes!
I'm very close to making a decision on medications for my MS. I'm thinking of moving forward with the Gilenya. There are risks, but there are very few options at this time. I saw a marvelous Doctor this past week. She is a neurological ophthalmologist. She feels that the risk to my eyesight, from the medication, is minimal. The risk to my eyes, from the MS itself, is actively happening. I have something going on called Optic Neuritis, mostly in my left eye. I'm having a lot of trouble with my vision. I'm spending very little time on the computer because of it. Thankfully, computers allow us to make the lettering very large. That way when I do check in, it's much easier to read. My eyes just tire very quickly. This condition happened back in 2006, but after a couple of months I recovered almost all of my vision. The doctor is also watching for something called macular edema, so I'm using medication in both eyes every night, as well as drops every two hours. I see her for another evaluation in a couple months. This is a lot of boring information to most, but hopefully is interesting for those of you who have been following my journey with the MS. (By the way, I should edit this for run-on sentences, etc., but my computer time is running out for today... sorry...)
As for the rest of my life... excellent! My husband participated in the Alzheimer's Walk and Vintage Car Show yesterday. He walked in memory of his mother and grandmother, who both passed from Alzheimers, as well as for an aunt who currently has it. Today he is honoring his dad, by participating in a Veteran's Vintage Car Show/Benefit. My sons are happy and enjoying their classes.
I'm trying to remain positive, but having MS is really getting old! So, if you came here today looking for something cheery... well, you may want to move along, right now, to some happy decorating/cooking/gardening type blog, because I'm getting "beat up" by MS again, and I have to talk about it!
I have been in a downward spiral for some time now. The pain in my lower back and legs was unresponsive to medications, but now that pain has gone. Instead, I have lost feeling in the lower back and most of both legs. My left eye is again swollen, vision blurred, and is being treated with steroid drops.
They (the great "they" of the medical world) are offering me Gilenya. A disease modifying drug, which also happens to have death, heart problems, loss of vision, compromised immune system, etc., to it's short list of "side effects" and I don't have the time, or the stomach, to read any more...
Pray you say? Yes, I have done that, and also have many friends and family praying for me. Awesome! But, God does not always choose to heal people. Even really nice folks like me. I can accept that... sort of. I do believe He loves and understands me... I never doubt that!
Where to go now? What to do? Say "NO" to this drug, and live with the certainty that this disease will continue to tear my brain and my body apart? Say "Yes" and take the risk of leaving my family way before my time... or going blind, which steals my favorite activities from me. Choices. Choices. I do not like these choices, but after this brief "pity party" I will dry my eyes, put my "happy face" back on, and try to pretend that life would never give us way more than we can handle. I'll be back soon, hopefully with a big attitude adjustment and a more optimistic view of life. Till then, be well dear friends!