Today has been another Lyme-filled adventure. Let me tell you. I feel as if I got so much accomplished, and yet as I sit back thinking about the day I’m worried. Did I do too much today? It was a good day, so I obviously jumped at the chance to actually function instead of just going through the motions of another foggy day. I woke up early for an appointment with my eye specialist, finished and turned in a long-term art project, made lunch, did laundry and hung it outside to dry, and finished 2 lessons in math (which is a major accomplishment these days!). I did all of these things, and then I was up again, laughing and chatting away at dinner with only a short hour-long break in between. So I’m in a quandary. It feels awesome! But I have a nagging feeling as well that I’ll be paying for it tomorrow. We shall see.
On to my usual update however- I saw my eye specialist, and even got to take the “visual field test” again that I hate. It makes me so dizzy! You have to press a button every time you see a white flashing light in your peripheral vision while your head is in a box. Well, I always start seeing flashes that don’t look like the other other flashes, so I have to figure out which ones to press the button about! By the time they do both eyes I start wishing I had someplace to lie down. But, those test results were normal. They test to see if I’ve developed any blurry or blind spots because of the swelling in my optic nerve. So far, so good.
The rest of my appointment went so-so. I was also lucky enough to have to get dilated once again. She was disappointed not to see any further improvement in my swelling. But, there seems to be no more bleeding. So that’s at least a good sign that I interpreted out of the meeting. She’s not sure what to do with me at this point. We came to the decision (after she conferred with my LLMD) that the best route is to have me get another spinal tap so that she can see what my cranial/spinal fluid pressure is. If it’s still up, then we move on from there. If it’s going down, then that’s good news. One major complication however, I now have to stop taking my new medication that was keeping the pressure down.
I need to be off the medication for the spinal tap, as well as the spit test and the tilt table test my LLMD is ordering. It will skew the results. We’ve also recently discovered that it’s not recommended for people with adrenal dysfunctions to take this medication. It causes complications, and we believe it has caused those symptoms to flare up in me recently. So I’m not sure what symptoms will crop up again after I stop taking it now. The doctor told me though that it isn’t at all unusual for me to be experiencing disturbed vision side affects like I have been, and that they might increase. So far I’m seeing black spots, white spots, black sparkles, colored flashes, and increased eye floaters. Sometimes scary stuff, but so far they all seem to be coming and going. I’m just thankful nothing has been permanent, or long-lasting.
My LLMD called this afternoon just to check in with us and answer a few questions we had. She’s such a busy doctor, I always appreciate the time she’s able to take out of her day to address concerns. Sure, it takes days to get a hold of her, but she always seems to have sufficient answers for me. This time she wanted to let us know that she agreed with the spinal tap, and is aware of all that concerns that. She spoke with my specialist about it. She also suggested that she’d like me to see a neurologist that she refers patients to. I agreed that I’d be perfectly willing to do that, especially after I heard that he specializes in inflammation of the brain and has a specialized MRI that could be very beneficial to us at this point. So many of my symptoms are neuro that it just makes sense to me to see him. My LLMD also mentioned that right now she’s wondering if I need to get a port and get some IV meds into my system. If the neurologist finds anything, she’s counting that as fuel towards the fire to submit to the insurance company if the need arises. That’s far in the future for now, but it’s the first time she’s mentioned IV meds for me before. I’m not sure how I feel about it, it’s still sinking in.
One more important event to note- today marks 4 months of treatment for me! 4 long, busy, chaotic, and fast-flying months. As I look back there are times that went by so slowly: the horrible, painful herxs, and the 3 week long migraine that nothing could stop. Those times I could do without. But there have been some good times in the past 4 months as well. Some time of healing, and of recognition. Overall, I think it’s been an eventful start to my adventure. Please, keep visiting me as I continue following my path and blogging along the way!
Peace and healing, molly
“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” –Helen Keller