You might’ve noticed that there was no post last week…Last week was a bumpy ride for my health and a ride that I don’t care to get back on, anytime soon!
Our week of traveling went well, we survived and even managed to kidnap my Grandmom in Virginia and bring her back with us while we were at it.
We spent a little time in Nashville where mom and I tried to eat our weight in fried green tomatoes and mom got to relive some memories as we visited the Grand Ole Opry.
But, we all know the heart of the trip revolved around my appointment at Vanderbilt Hospital. In all honesty, after some discouraging pre-visit phone calls, we weren’t expecting much from the visit, but we were happily surprised. The appointment went better than expected. So far nothing mind-blowing has come from it, but we still await the results of different tests they ordered.
We were able to gain little nuggets of information and more confirmation that we are indeed on the best treatment route for my POTS. The doctor decided to discontinue one of my meds and offered up some suggestions of potential medications to try down the road.
I guess this was a little mind-blowing for me, but the doctor I saw decided that my weekly infusions are a must for the time being and should not be messed with. Although, not a mind-blowing realization for those who know me and know me with and without infusions, but mind-blowing to hear coming out of a Vanderbilt’s doctor’s mouth. They don’t normally agree with IV hydration as a treatment for autonomic dysfunction, but then there was me…. I like to think I broke the Vanderbilt mold!
The visit itself went well, but the consequences of traveling and stopping medicines and infusions in order to get accurate test results, made my body…let’s just keep it PG and say my body was mad. Yeah, mad. Reallly mad. My body didn’t just hit a wall, it hit a brick wall while running 60mph with no protective gear on…guess what happened?! I crashed… like someone had to come and scrape me up off the floor crashed. Matter-of-fact my brother and dad carried me up the stairs to my bedroom a few times last week.
Monday morning the 8th brought a migraine the size of Texas. The intense migraine lasted Monday through Wednesday. It involved, dry heaving, pain unbearable, sweating, nausea uncontrollable, the dark was too bright and the silence was too loud. Thankfully my neurologist had a plan in place and we were able to combat it with an oral cocktail of 5 medicines and by increasing my IV hydration. Wednesday morning brought a wave of relief as my migraine broke.
Wednesday night I woke up with severe nausea, stomach pains and sweating. I rode it out for a few hours with my best friend aka my heating pad and some nausea meds. I eventually fell back asleep and then later woke up to go on with my day, but Thursday night after dinner it started again and began to intensify.
Here’s the thing, when you have a screwed up GI system, like mine, you can not, I repeat, you can NOT mess with your normal: diet, exercise, sleep, fluid intake, and medications! Ya just can’t…but I did.
So, Thursday night I found myself in a fun position of dry heaving, convulsing, sitting on the toilet, losing feeling in my legs and going in and out of consciousness. It was a fun time. Friday brought an exhausted girl, but a much better day. I’m on the road of recuperating, but my body is tierd. Yes, I said tierd.
Now, I’ve spent all this time talking about myself and I haven’t updated you on mom and dad yet! Dad went to the surgeon last week and he is running some more tests before he tells us his plan of action.
Mom is now back in the spotlight this week as she heads into surgery this Thursday. In typical Johnson fashion and in particular Sherrie fashion, the doctors let us know on Thursday of last week that they would like to proceed with surgery this Thursday. They will be doing a type of eyelid surgery.
Because her myasthenia effects all of her muscles, her eyes are affected just the same as the rest of her body, if not worse. They plan on putting a rod above mom’s eyelids in order to attach the muscles to them and to prevent her eyelids from drooping so severely.
Mom has had a few strokes in the past, one of them actually caused her to lose all vision in her left eye, so she relies on her right eye for sight. But, when your eyelids droop constantly, then, vision is significantly impaired. We are VERY hopeful that this surgery will be a corrective measure in order to bring sight back to her right eye.
I’m thankful for already a better start to this week, the sun is out, I can stare at a screen long enough to actually write and post my blog and Easter week is upon us! We have a big week ahead of us with mom’s surgery, but we know that no matter what God’s got this! We are thankful and hopeful for better days ahead!
This brought a smile to my face and warmed my heart this morning as I read it…
“For the Lord God is our sun and our shield. He gives us grace and glory. The Lord will withhold no good thing from those who do what is right. O Lord of Heaven’s Armies, what joy for those who trust in you.”
Psalm 84:11-12
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