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.

2019 Resolutions

I know, we’re almost half the way into the year, so a post about resolutions may seem a bit tardy. Thing is, I don’t actually believe in setting resolutions. I believe in learning lessons. I started writing about the lessons I’d learned from 2018 earlier this year, but never finished because of all my health stuff. Rather than let what I had down go to waste, I figured why not throw it against the wall here and call it an A for effort. So here goes…

• The capacity to disappoint and/or devastate the people we care about is innate in every single one of us. It’s a matter of choosing each day to give others as much respect and grace as we give ourselves. No one knows this as well as a parent. Kids will break your heart, man, and because you’re hardwired to love them, you take it on the chin, forgive, and keep it moving. Think before you speak, pause before you act, and consider the ripple effect that what YOU say and do will have on those around you. Make a conscious choice to take the high road.

• Family and friends are an absolute necessity. At the end of the day though, no matter how solid your support system is, there are experiences in your life that you will have no choice but to go through literally by yourself.

My health problems have always been a glaring example of the dichotomy of having a huge, caring network of family and friends encouraging me and simultaneously feeling alone…no matter how much they want to be there or how much I want them there, there comes a moment where nurses physically won’t allow them to come any further as they wheel me away on my gurney.

There are about five to ten minutes between when my loved ones are told they have to stay behind the double doors and when I finally get the happy gas or sleepy sauce or whatever, and I’m alert and keenly aware that I am all by my lonesome in a room full of strangers and implements of torture.

In those moments, I wonder what other people who don’t have a relationship with God feel like. It’s hard enough for me and I’ve been knowing God since I was little. If I’m in there having a moment while I’m having a nite-nite chat with God and I still have one or two sad tears roll down my face, how does someone without that relationship deal??? I’ve just learned that I need to draw nearer to God in those moments so that I have less time to feel far away from my earthly family, because even when I’m by myself, I am never alone.

• How you came up in life has a very real and very powerful impact on how you develop as an adult. Half the population will use their youth as an impetus to do better. The other half will use it as an excuse. Each of us comes to a point in our lives when we get to make a choice: rocket ship or crutch. And if you wake up one day and find that you’ve made the wrong choice, there’s good news…each new day is a new chance to choose the rocket ship. Always try for the rocket ship.

• As long as I live, there will always be more stuff I haven’t fixed about myself yet, and new stuff I didn’t even realize was broken. There’s no shortage of work to be done on myself. As such, I really have no business mucking about trying to fix anyone else. And vice versa. So I’m respectfully not interested in anyone’s opinion of how I can be a better me. I’m already on it, thanks. We’d all do better to focus our “helpfulness” on ourselves.

• Invest more in experiences and memories, and less in stuff. Give more, hold onto less. Cluttered physical space can equate to cramped emotional quarters and inadequate mental boundaries. Create room for healthy living on all levels, for everyone sharing your physical, mental, and emotional space with you.

That’s as far as I got, but it’s more than enough for me to work on this year. Oh, and tomorrow completes one full week on the Mavyret! So far so good…(knocking on wood) no crazy side effects, haven’t noticed that I’ve been more fatigued or headachy than normal. I’m not sure if side effects kick in after you build up like two or three weeks in your system though, so who knows. I could have a violent attack of gastrointestinal issues in the middle of the night tonight for all I know. If I do, I’ll be sure to post about it in great detail tomorrow. 😁 Hehe…

-Tessa’s Bum Liver

Grand Mal Headache

I missed posting yesterday because I woke up with a righteous headache and it stuck around allllllll day making me miserable. Now, I know headaches are one of the main side effects of the Mavyret, but even I am not willing to blame it on the ONE dose I’d ingested at that point. So like Milli Vanilli, I was blaming it on the rain. (Turns out my uterus also had a lot to do with it. If that’s TMI for you, get outta here. We’re all grown.)

Luckily, I got up today and all was right with the world. Since I don’t have anything medication-related to report, I figured I’d take a quick five to talk about how I came to find myself with Hepatitis C in the first place.

Four score and seven years ago, back in 1991, I was a chubby young thirteen year old nerd enjoying the summer before my 8th grade year. We started noticing that I was huffing and puffing more than usual from physical exertion, I was paler than normal (like Twilight level but without the glitter), and that I had some weird looking rashes. We didn’t think much of it at first, other than that I needed to get off the couch and get outside more.

We went to the state fair in the Fall and I remember as we pulled into the parking lot, my leg itched and I was scratching it through my jeans, but couldn’t quite get the itch to stop. We stopped at the bathrooms on our way in and I was grateful for the chance to get at the itch unimpeded. When I got in the stall, no more than 5-10 minutes from getting out of the car, my leg had four ugly crimson striped bruises where I’d just scratched it in the car. I was so startled by it, I had my mom come into my stall to look at it. She told me to stop scratching so hard, and we brushed it off and went on about our day.

Then we noticed the “rash” around my ankles where the elastic on my socks would be, or if I had a pair of tight pants on, the rash would show up around my waist as well. We thought it was heat rash, until I went in for a hair appointment. When my mom picked me up from the salon, the back of my neck where I’d laid at the shampoo basin was dark purple with bruising. We made a doctor’s appointment as soon as we got home. I remember driving home, asking her if I was dying. She scoffed and told me of course not. How could we possibly have known?

I’ll tell the story of how I came to be diagnosed with Aplastic Anemia another time, but all of the bruising was the result of a rare blood disorder where the bone marrow stops producing platelets, which is what causes your blood to clot. I had numerous red blood cell and platelet transfusions during the months we waited for a diagnosis and when I was hospitalized for treatment. In 1991, the medical community didn’t know that there was such a thing as Hepatitis C yet, so blood transfusions weren’t tested for the virus before they were administered to patients like me.

Because I was being treated for a blood disorder, we knew almost immediately that something was wrong with my blood. Back then, they called it “non-A non-B hepatitis” until enough of us had it (and until type D popped up) that they finally named the puppy.

Treatment for Hepatitis C back then was unsophisticated and a lot of the time caused more harm than good, so I waited. Then I saw more specialists, and they said I wasn’t that sick, so I waited some more. Then I saw more specialists and there weren’t really many good choices for my specific genotype, which only 9% of Americans with Hep C have, so I kept waiting.

I basically waited myself right into cirrhosis, but I believe all things happen for a reason and in His time, and at some point, I’ll also tell you the stories of all the ways the pieces fell into place perfectly for me to start treatment at this point in life with this team of practitioners. It’s a mind bender y’all.

Until then, I’ll be over here watching The Dead Files and having some Chef Boyardee.

– Tessa’s Bum Liver

BYOM / DIY

It’s D-Day! Today is the day I will start Mavyret. I’m supposed to take it with a meal, so in honor of this momentous occasion, I’m heating up a frozen pizza right meow. More on that later.

One of the unusual quirks about the specialist I’ve been going to is that they like to have all of their patients’ medication delivered to their in-house pharmacist to dispense so that they can provide counseling, education, and support. I’m assuming there are insurance companies that don’t have a problem with that, but my insurance company hasn’t played well with others throughout this experience.

They rejected five separate claims for Mavyret before my specialist was finally able to schedule a conference call to discuss the specific details of my medical history that were the impetus for his request that I be covered to take Mavyret instead of Epclusa. When doctors file an appeal after the insurance company rejects a claim, the insurance company hands the appeal over to a board certified MD to review. What that MD reviews is the boilerplate form that everyone fills out. It doesn’t have extra spaces for the requesting physician to write in the fine details that take me from being writing on a page to an actual human being. The system is a mess, y’all.

I digress. Insurance finally approved the medicine, but they weren’t giving in to the specialist’s whims. Oh no. In one last act of defiance, they called me and asked me what address they should use to ship the medication. LOL. Now, if my experiences with the specialist’s staff had been all roses and sugar, I probably would’ve had insurance send it to them. However, I was kind of feeling the whole defiance thing, so I went with it and had them send it to my house. I knew if I called the doctor’s office and said, “Yeah, hi…so I have this medicine here, should I just go ahead and take it?” that I’d get in for an appointment a WHOLE lot faster. Like, within two days. Good stuff.

A month or so back, the nurse had told me I needed a couple of vaccines, and that if I just called them the next time I was coming in for an appointment about 20 minutes ahead, they’d get the shots ready and just hit me on my way in or out, no big. So I called ahead as Hubs and I were on our way, and you’d have thought I had called to arrange for my personal helicopter to land on the roof and drop me off. And my helicopter was Air Force 2. And riding along with me for the day was Trump, live tweeting the whole scene. Like, what??? It’s two vaccine shots, homey, and y’all are the ones that told me to just phone it in 20 min ahead of time NBD. While I waited on hold for the nurse to check with a variety of people about what she should do with this unruly psychopath on the phone demanding vaccines, I joked to Hubs that since we already had to BYOM to the Medication Therapy Appointment, maybe I could just have them leave the syringes on the front desk and administer the shots myself as well and make a whole DIY Day of it.

When I checked in, I did actually offer to DIY my own vaccines, which is when they curtly told me they’d handle it. Lol. Yo, if I suddenly stop posting and you find out I died randomly, have the cops check out the staff at the specialist’s office. And tell them it was probably just like some kind of manslaughter, because I can be a lot to take. Just sayin.