Chronically Ill badass

I am a chronically ill badass (or so I tell myself).

I am also frustrated, exhausted and completely overwhelmed.

Hello everyone, I know it’s been a while but I’m officially back. I’ve got some great updates and some not so great updates so bear with me.

Last time I updated my blog was back in March and that was after one of my worst sick seasons yet. C diff absolutely ruined me. I lost so much weight, I wasn’t eating, I was barely functioning. I was in a hole I didn’t think I would find my way out of. But, April kind of turned my whole life upside down in lots of different ways. I met someone…an absolutely wonderful someone. For a very long time, everyone was baffled by my single status. I wasn’t though. I was single because I absolutely refused to settle for anything less than I deserved. I’d done that before and it wasn’t a road I was willing to go down again. That all changed when I met Anthony. He is warm and caring and accepting of who I am (even if it means being sick 50% of the time). He is what I’ve been holding out for. Once the school year ended and I had the summer to enjoy life and a new relationship - I felt GOOD. I felt GOOD GOOD. I started eating very small servings in the evenings (not all the time, but occasionally….and that is a huge deal for me. I haven’t had “dinner” since 2019). I didn’t live in fear of my body turning against me for a solid 5 months and I chose to enjoy the heck out of it. So that is why I disappeared for a brief period of time.

Now I’m coming at you from a whole different perspective. Anthony lives with me now, I started a new job in a new district. Lots of changes - lots of good changes. But in its true nature - my body is throwing wrenches at me.

In May, I started acupuncture and it has been life changing. It has significantly helped with my esophageal motility. I knew from the first appointment that it was going to be life changing and it really has been. I go every 2-3 weeks and it tends to be a big “reset” for me with a lot of my symptoms.

BUT as we all know…my body hates stress and change. And I made some really big changes this year. In September I started to feel some of my esophageal symptoms really flare. The pressure in my chest was raging - every time

I swallowed, I felt it get lodged and I needed mass amounts of fluid just to chase it down. I reached out to my doctor and we decided to go in and stretch my esophagus - which helped a ton. It almost immediately relieved the chest pressure and extreme pain from swallowing. I did well for a while with the stretch but the bottom line is - my entire digestive tract is paralyzed in one way or another and sometimes it just can’t handle life. From October to now - I’ve had random and sporadic episodes with symptoms ranging from lower digestive tract to upper digestive tract. My spasms have become significantly more painful when they do happen. One spasm knocks me on my butt - it sucks the life right out of me and the only thing I can do to help - is sleep. I always say this and I know it is sad but when I’m sleeping…I feel NO pain at all and sometimes it is just a relief for me to close my eyes. I sleep to feel good. When I have multiple spasms in one episode, I’m a goner. I can barely walk or talk or think straight. It’s pretty scary.

On top of my normal crazy digestive tract. I got a really horrific cold Thanksgiving week, then I got nailed with covid the week before Christmas. On top of that, I apparently also had strep throat while I had covid and I left it untreated because I thought it was just my esophagus being all crazy pants. They had to put me on an antibiotic for the strep throat and I straight up panicked because antibiotics are what caused c diff for me last year. My primary care doctor is amazing though and she put me on c diff medicine along with the antibiotics to prevent anything like that from happening.

The antibiotics didn’t give me c diff again but they created a battle of sorts in my body. Taking any new medicine is a huge gamble for me. It can either go well or it can go not well and when it doesn’t go well - it’s pretty bad. Amoxicillin and I are not friends. For the entire ten days that I was on them I was fighting exhaustion, pain, frequent and unpredictable trips to the bathroom, nausea, hot flashes, cold sweats…you name it.

In the midst of all of this, I had a follow up with my GI doctor for my procedure that I had in September. Yep - I had a follow up in January for a procedure that I had in September. The medical field is a joke right now. I explained to her what has been going on and told her that my upper digestive symptoms seem to be relatively in check but right now I’m experiencing a flare in my lower digestive symptoms. Extreme bloat (to the point where I look 8.5 months pregnant), unpredictable bouts of constipation and or diarrhea, and extreme abdominal discomfort. These are all trademark symptoms for a condition called IMO (intestinal methanogenic overgrowth) which I have had in the past.

With my diet being mostly processed food (as my stomach can no longer process food, the more processed something is…the easier it is for me to eat), no fiber, no red meat, basically nothing but carbs and coca cola…bacteria love getting up in there and living the dream life. My doctor thinks this is what is going on right now BUT because of my history with c diff…we can’t just treat this case with medicine. We first have to prove that I do in fact have IMO before we can treat it. If this happened to someone with a relatively normal digestive tract, they would probably just treat IMO because it is a beast to deal with. So I agreed to this, I was appreciative of the fact that she was being thorough. When I left my appointment - I went to schedule the test and the soonest they had was April. So I am currently having symptoms of something and the doctor thinks I could potentially have IMO again but I have to go from now until April…that is 4 months, 4 MONTHS!!! Without any clear answer as to what is going on inside of me. I have asked to go on a cancellation list, I’ve asked the doctor to move things up but I have had absolutely no luck.

In the meantime, I’m on the struggle bus over here. My sporadic episodes (combined with being sick in November and Covid in December) have caused me to miss work - I have no sick time left and it is a really, really scary position for someone like me to be in. January through March tend to be the toughest time of the year for me - it’s dark and gloomy and work tends to be heavy on paperwork and stress this time of year and that all negatively affects me. I had my first spasm at work today and it doesn't matter how many spasms I have had, they don't get any easier to get through. They are scary and painful and overwhelming.

I hate feeling like I’m unreliable. I hate not being there for my co-workers and my kiddos. I hate feeling like I'm letting friends and loved ones down when I have to cancel plans or when I refuse to even make plans in the first place because I fear having to cancel. I hate not knowing when I’m going to get sick, I hate not knowing what it's going to entail, I hate not knowing how long it is going to last for, I hate that no one will ever truly know what it feels like to have my body and experience what I am actually feeling.

I think I probably say this in all of my blog posts but it’s because it is important to me and to anyone struggling with Gastroparesis, ineffective esophageal motility, intestinal methanogenic overgrowth, IBS and any other chronic illness that exists out there: every single day is a battle with our bodies, we don’t have a lot of answers and we have to fight really hard for the answers we do have, doctors don’t truly understand everything we go through, the world doesn’t really understand what we go through. We may have a smile on our face but we are a mess on the inside most of the time. I have come to terms with my illness as I know there is nothing I can do to change it. Nerve damage is not reversible. But that doesn’t mean I have to be ok with how much it has changed my life and how much it has taken from me.

I’ll keep on fighting the good fight for now and I promise not to disappear for 10 months ever again 💚