Numbers Don’t Lie

So it’s been five weeks that I’ve been on the Mavyret now. I went in last week to have blood drawn so they could check my viral load and see if the meds are doing their thing. In true specialist fashion, the labs were drawn last Tuesday and my appointment to get the results isn’t until tomorrow, because if you don’t have to wait at least a week, it takes some of the magic out of it all, right?

I go in tomorrow morning to see the P.A. and hear if anything’s been going on under there besides migraines and liver cramps. Cross those fingers!!!

Speaking of migraines, I still haven’t had my appointment with the neurologist about these pesky migraines because his wait was so long. My appointment is June 10th. Until then I get to just keep curling up into the fetal position a few times a week. Tuesday, I was fine all day and then around 3:00, I heard that low rumbling off in the distance of the Migraine Freight Train headed my way. Literally within an hour I was down for the count in a dark bedroom. It stuck with me the rest of the night. I sure wish I could wait even longer to get help! Golly!

I’m hoping tomorrow is a positive visit with good news that I’m halfway done with treatment and responding well. Even more hopeful that the neurologist can figure out how to kill off whatever evil critter is tap dancing on my medulla oblongata. I could be finished with all this mess by late June, with just enough time to get a nice microderm facial and some ‘angel kisses’ before my birthday in July so I’m really feelin myself again for a change!! Snaps!

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Just a Little Cramp

I had to fly for work this past week, a late evening flight into Houston followed by another hour and a half drive to get to the small town I was doing work in for a couple of days. It was a quick trip that was pretty much on the go the entire time, so by the time I got home Friday at 6p, I was fried.

We had plans to go over to a friend’s house for dinner yesterday evening, and I noticed that my right side up under my ribs was a little achy but that’s happened before, so I just kind of brushed it off and went on about getting ready to go out.

My side kept aching throughout the evening, and when we got home, as I went to get into bed, I must’ve torqued myself just so about the abdomen, because I had the most breathtaking cramp/Charlie horse/liver spasm/whatever EVER that stopped me dead. I laid in that weird position taking shallow breaths and clutching my side as tears rolled down my face for about 10 minutes.

After about 10 more minutes I was able to roll the rest of the way into bed and lay flat on my back, and after about 20 minutes more, I was able to fall asleep. It’s still tender today.

I have no clue what set that off. I’ve had sharp pangs before, but they were like a quick electric shock that was gone before I’d fully processed what was happening. This one was more like a taser shock. Not cool. If that could never happen again, that’d be great.

For now, I’m gonna keep lying here in my recliner, very very still, so as not to attract any attention from any of the internal organ demons running amok.

Good Sunday,

Tessa’s Angry Bum Liver

Truckin’ Along

It’s been a minute since my last post, sorry y’all. I actually feel like I may (knocking on wood) be acclimating to the meds and the headaches may start to abate. The neurologist I was referred to is booked out 6 weeks in advance, so I won’t see him until mid-June to find out what’s kicking around in there, but I do feel like it’s been a little less violent lately…

I haven’t noticed a change in my energy levels just yet. My sleeping patterns have been pretty rando, actually. Some days I sleep like it’s my job, and other days I go to bed at midnight and am wide awake at 2:30a doing crafts in my office. I will say that when you’re a midnight crafter, nothing beats a good diamond painting. The repetition of placing thousands of tiny plastic discs on a sticky color-by-numbers mat does wonders for shutting down pesky brain activity.

So I’d previously mentioned being diagnosed with Aplastic Anemia at 13. I had weird bruising and bleeding that tipped us off that something was up, and the initial standard lab tests showed that my platelets were at 81K; normal is between 150K-400K. Over the span of two to three months, while doctors did numerous tests to try to figure out what was wrong, my platelet count dwindled, plummeting to a terrifyingly low 2K, wherein I was told to lay in my hospital bed and not move while the platelet transfusion was on full throttle.

They tested for all kinds of leukemias, cancers, ITP, HIV, AIDS, etc., finally settling on the rare Aplastic Anemia, which occurs in only one to two people per million each year. There are a variety of causes of aplastic anemia, but as was the case with my diagnosis, in about half the cases the cause is unknown. Growing up in a rural farm community, pesticides and insecticides were common, which can be a cause. Certain drugs can also cause it, such as chloramphenicol, which is an antibiotic I was prescribed as a child to treat Rocky Mountain Spotted Tick Fever (I’m telling you, I’m a drain trap for weird health issues). We never really knew for certain.

As soon as we had a diagnosis, the doctors told us the only course of action with any real promise was a bone marrow transplant, so they started out by testing my older brother to see if he was a match. Despite my misfortune when it comes to random health problems, God definitely had my back on the BMT, because it was One & Done with my brother – no other testing needed, he was a match. Everything happened so fast after that…it seems like within days, we found out he was a match, I had surgery to insert a Hickman catheter, and then I was wheeled up to the BMT Unit and shown the room I’d be in for the next two months. I’m still annoyed that they let me walk into the room, with its’ full length Laminar air wall, without telling me that once I went in, I wouldn’t be allowed to come back out. If I’d known that, I’d have given my mom and dad one last hug without the gowns and masks and gloves and regalia before I walked in. That’s how they get ya…

I walked into my room on December 3, 1991 and started a course of chemotherapy to kill off my immune system. On December 10, 1991, I received my brother’s bone marrow (if you’re curious, it looks like blood and is administered through an IV…when I asked the doctors how it got from my veins to my bones, they said, “We don’t really know…it just does.”). On Christmas Day in 1991, my blood counts showed the first signs of bouncing back from the illness, and on January 28, 1992, I was released from the hospital and allowed to return to my hometown two hours away. The day I got home and we pulled into our driveway, our house had banners and balloons and flowers along the garage door, my bedroom windows, the light in the front yard, and all over the front porch from neighbors, coworkers of my parents, friends from school, people from our church, etc.

Throughout the transplant, my mother stayed with me in the city during the week, and my dad and brother would be back home working and going to school. Mom stayed at the Ronald McDonald House, and would have frequent visits from my Grandparents during the week, and from my dad and brother every weekend. When Mom ran out of personal leave, the teachers in the school district back home donated their own personal days to a pool for her so she could stay with me and continue to get a paycheck.

My dad’s job was our primary insurance provider, and the insurance company started sending a rep to check on me at the hospital during the transplant, and long after I got out…not just because I was a huge investment for them, but because they actually cared how I was doing. While Mom was in the city with me, our church and my parents’ jobs organized food delivery so that not a single day passed that my dad and brother didn’t have a home cooked meal provided for them in Mom’s absence…for two straight months!

After we got home and Mom was comfortable going back to work, I was still at home because being around people was too risky with my weakened immune system. Mom’s friends who didn’t work took turns stopping by to check on me, picking me up and taking me for a drive just to get me out of the house, going to the Sonic for a Vanilla Coke, or taking me back to their house with them to hang out while they did chores.

All of those experiences were like being able to see the face of Jesus each day in the people around me, and showed me that God truly is everywhere. He has a plan for each of us, and while there are times when gross stuff happens, He is always there to walk through it beside us. That has given me the comfort and strength to face each subsequent random health crisis I’ve encountered head on. That doesn’t mean I don’t still get scared or worried or anxious or sad, it just means in the end, I know that He has plans for me…plans to prosper me and not to harm me, plans to give me hope and a future. (Jeremiah 29:11)

Much Love – Tessa & Her Bum Liver

My Brain Skull

These migraines, y’all. Sigh. So far, I’ve lost two days each week in misery, unable to function because my brain skull feels like it’s about to crack open and a baby dragon is gonna crawl out. I called my doc earlier to ask if there’s another med we can try…she’s sending me to a neurologist. My Top 3 Predictions for what they’ll see when they look inside there are as follows:

  1. Doozers from Fraggle Rock building far more elaborate, modern sugar structures than they did back in the day
  2. Tiny Martin Short a la Inner Space trying to figure out how to get out of there, which involves intermittent welding on his busted 1980’s ship
  3. Empty space that’s full of billowing clouds of glitter, and one mother wolf spider with all her babies on her back

I’m really hoping it’s the Doozers. I’ve always loved those little dudes.

Yelly Belly

So I’m supposed to take the Mavyret with food to avoid upset stomach. So far, I’ve taken it with my evening pills within 30 minutes or so of eating, and I haven’t had any issues. Yesterday, I did the same thing, except maybe an hour had passed between eating and taking the meds, and my guts were not pleased. Could be unrelated to the meds altogether but I just tells it like it happens. I had to lay down when we got home from dinner/errands, but I’m back to “normal” today!

Now I’m gonna go finish assembling the Ikea nightstand I got like a month ago. Ikea…….so affordable…..such a whip putting it all together. Sigh.