May 31st Update
It’s been a minute. A lot has happened. Buckle up, it’s gonna be a long one.
Still dealing with the steroids
I’m witchy. I’m definitely wayward. I don’t feel like much of a Warrior. The steroids I was given to reduce the inflammation caused by Multiple Sclerosis are still having a negative effect on me. I am still a bit more aggressive than normal when things don’t go my way. Normally I’m more docile, more easy-going. Lately, I’ve been ready to bite someone’s head clean off if they cross me. So watch out, 😉 I have to say the muscle pain did diminish quite a bit, but it seemed like the nerve pain increased a bit, too. It was a trade-off: less muscle pain for more nerve pain. Which is worse? I’m not sure because I need less of each to function. I am still having spasms in my legs due to Multiple Sclerosis, too.
MRIs! Yay!
I finally had my MRIs to diagnose Multiple Sclerosis done! Woo freakin’ hoo! I even got my results. Let’s start with the lumbar spine: L5-S1, where I had my fusion in 2013 and 2016 is intact and looking good. L4-L5 not so much. The disc is disintegrated with a cyst on it. All the way up and down the rest of my spine, including my neck, the MRI showed disintegration of the discs and narrowing of the spinal canal. My brain showed that there were slightly prominent cerebral spinal fluid flattening the posterior globes of the optic nerve sheaths, affecting my vision and may become permanent. This is because I have idiopathic intracranial hypertension, otherwise known as a pseuotumor cerebri. The MRI also showed that I had white matter lesions and demyelination in my brain. These things are indicative of MS.
Not sure how to feel…
I felt validated that my brain MRI showed that I had Multiple Sclerosis because there are certain people my family knows that say Multiple Sclerosis is not real if it is only on a lumbar puncture and not on an MRI. This was almost my situation. However, any doctor or nurse worth their weight in salt will tell you that you can have MS if your lumbar puncture indicates it, but not your MRI, or vice versa. But now, both tests of mine indicate that the MS is real.
I am not sure how I feel about this. Relieved, in a way? I have been dealing with dozens of smaller maladies that cause pain, etc. for over a decade. Now, I finally have a diagnosis. A name to put to the pain. But…this is the rest of my life. Things will never get better. This is ground zero. Things can only get worse. There is no going back to a better quality of life. From here on out I have to make the best of what I have and make my quality of life the best it can be.
Witchy Healing
This is where being a witch comes in. It’s not all spells and magic. Sometimes it’s meditation. Centering myself to handle the pain and emotions. 
Receiving (and sending) positive energy from the Universe. Aromatherapy. Self-healing baths. Journaling. Therapy. Listening to my doctor.
New Pain Management Idea
Speaking of, my pain management doctor, Dr. G, has been thinking about changing the cocktail that is in my pain pump. Multiple Sclerosis is already doing a number on me, and my doctor is doing his best to help me out. He decided to add baclofen, a muscle relaxer, to calm my legs down. He explained that it would take about 24 hours before I would really feel the effects, as the old mix would have to cycle through the tubing in my back, and my bolus would not be any good during this time. A bolus is like a bump of meds when I am in extraordinary pain.
He also told me that if I find myself feeling too incoherent, confused, or fatigued that I should stop taking my oral baclofen. I take oral baclofen at night for the same reason as it was put in my pump – to calm down all my muscle spasms and to help me sleep. I was told I could also take it during the day, but it did make me too incoherent to function, so I declined. It worked enough to help me sleep a little, but not being functional during the day was not worth it. Again, another trade-off.
It did not work as expected
Well, by dinnertime, I was in significant pain. I had pain at the disc above my fusion in my lumbar spine and everything thing below it. My muscles were so weak and my back was on fire. I could not even bend down to get the bowls to feed my dogs. It was like I did not have a pump at all. The bolus only made things worse. This went on for days.
I gave the situation the recommended three to four days to see if it evened itself out. It most certainly did not. On Thursday morning I called my pain management doctor’s office, hoping to catch him before the long Memorial Day weekend. I was informed by his medical assistant, A, that all the providers were already gone for the holiday. I explained the situation and she said she would try to get a hold of Dr. G. Later that day, I was told that no one was available to see me, so to basically suck it up, not use the bolus, and come in and see the Physician’s Assistant on Tuesday, June 1.
Only time will tell
We’ll see what happens there. I understand that this is not really Dr. G’s fault. He is trying to find the best cocktail of meds to put in my pain pump to give me the most relief. He said he changed the concentration and I don’t know if that means he lowered the amount of Dilaudid and bupivacaine that I receive throughout the day, but I do know that whatever he did is not working. In the meantime, I cannot do chores, I have to sleep/sit/rest between my recliner and my bed, and I am pretty cranky in a big way.
Support system sent by the gods
Thank the gods for my loving, patient, giving support system. My family tolerates my temper tantrums, me flying off the handle at the stupidest conflicts, and then being full of regret and over-apologizing for being too emotional. Friends listen to me rant and rave about these crazy outbursts, blaming everyone but myself, then realizing that I am totally out of control. All of these angels deserve a month-long vacation far away from me. If only I could give them that.
I was given a new family member
Then there’s my big sister, who I’ve only come to know recently. Long story short, my Pop didn’t know he had a daughter. She found him and after a while, she and I became sisters. This woman is a wonderful person and a very talented artist who makes the most amazing jewelry. You can check out her creations at www.heidisparkles.com. 
She has two other family members who also have Multiple Sclerosis, so she created a line of jewelry that when sold all proceeds go to the National Multiple Sclerosis Society. I was so touched when she created this line. She created a keychain just for me to lift my spirits and give me hope. I took the keyring off of it and wear the charms on my necklace with my pentacle. The large piece is a seed, representing new life and hope. You can see this line of beautiful and creative MS jewelry on her website and make a purchase to support the cause. Thank you, H, for all the hope and support you’ve given me. Having a big sister is turning out to be pretty great!
Phew! That’s Enough for Now!
Future plans: going to see the neuro-ophthalmologist about the psudotumor cerebri this week. Otherwise, that’s the latest update, bumpy ride and all. Thanks for sticking with this Wayward Witchy MS Warrior on my journey – there will be lots more updates and lots more stories to tell. Trying to keep it upbeat is tough, but being a Pagan in the Wild Wasteland, I’m used to desert highways and byways that take me down tangents to find that little nugget of gold to light up my day. Take the road less traveled and find your gold, then tell me about it in the comments. Blessed be!