Hospital Update

Part way through 2014, I had a goal. Realizing I made it thus far without a trip to the hospital this calendar year, my goal was to make it the entire calendar year without. I realized this was mostly out of my control, but I was hopeful. It would have been the first calendar year since I don't even know, maybe since 2004? that I would have stayed out of the hospital completely.

I made it 11 months. November 30th, 2am. I woke up in the middle of the night with nearly unbearable stomach pains and nausea. I'll spare you the details but I remained awake severely sick through the night into the morning. Around 7am I just couldn't take it anymore and told my mom I need to go to the hospital. There was nothing left in me and I couldn't get anything to stay in me so in addition to the pain, nausea and sickness I was getting weaker by the minute. MG and POTS flare ups were just around the corner.

I was admitted and remained in the hospital for 3 days. My fever spiked, blood pressure dropped, head was hurting... but hey, with IV fluids IV zofran the stomach issue was improving. After about a day and a half I was able to slowly start eating again. Once my fever went down and food stayed in me, they sent me home.

So what landed me in the hospital? Well that's part of the problem. They are guessing it was a virus. Guessing. That's what aggravates me. They didn't do anything to find out what it was, nothing. All they did was make me stable. That's what aggravates me about the medical system in general. They want to drug you up and send you home. No thank you! I refuse pain medication and many other meds as much as possible. I don't want to mask my symptoms; I want to figure out the cause and treat it to the best of my ability! They did nothing to address the breathing issues that arose while I was there. And most concerning, my white blood cell count dropped drastically. Normal is typically above 4. When I was admitted it was 5.8. When I left it was 1.8! Your white blood cells are what protect you against infection. Mine are currently very low putting me at risk of catching anything. If they drop lower my own bacteria in my mouth can actually make me sick. That's insane. I want answers, not just an enormous bill for sleeping in an uncomfortable bed.

My MG and POTS are flaring now as that is what getting sick on top of sick does. I am weaker, vision unsteady, balance off, dizziness, lightheaded, still some come and go nausea, fatigued. Also, I had to stop my lyme meds since I couldn't keep anything in me so now I have this week off starting different meds for the lyme next week. So now my lyme is also flaring having nothing to keep it under control... joint pain, stiffness, brain fog, lyme rage/anger/mood swings. In addition I have a sore throat and don't know what that's stemming from.

So anyways, if in fact it was a virus that landed me in the hospital, this is what I often talk about. I must must must avoid people who are sick. My body does not fight things off like healthy people do. And when I catch something it affects me much stronger, risking other serious complications. I am thankful this stay was 3 days as opposed to my last stay of 6 weeks, but no hospital stay is fun or cheap. So please please if you are sick, don't be near me because it's a risk I cannot take. We with chronic illness really can't stress this enough and yet we often feel still people just don't quite understand or care to acknowledge that need unfortunately. I myself should probably do more to avoid this such as wearing a mask in public as I know some do but I haven't had the courage to do that quite yet. So many people don't even go out because of this. What I dealt with was extremely mild compared to what some others have had happen or what it could be. Bottom line: we cannot risk getting sick on top of sick.

Having chronic illness really is hard to deal with. It's hard when those around you don't understand that you look fairly normal but constantly feeling sick, constantly fighting inside your own body. It's hard when you get questioned and accused by doctors, friends and strangers. It's hard when you have to prove yourself because it's not outwardly visible. It's hard when you know it's never the end and it can always get worse, another hospital stay is years, months or days away. It's hard to realize THIS is your life and you can't exchange it for a new one. THIS is your body you are jailed within that prevents you from living life to the fullest you want to live it. It is extremely hard, feeling alone, isolated, down, defenseless, accused, attacked, forgotten.

So as I once again rest, I take a moment here to update those who care to be updated, but also a moment to say thank you. You, who are reading this, who care to know, who support and encourage me... you are the ones who help keep me going, who keep me wanting to fight the fight that never ends. Thank you especially to my parents who no matter how many days, weeks or months I am in the hospital, they are there. And when I'm not in the hospital they are still there, helping me whenever and however I need. They took me in when another threw me out. I don't know what I'd do if I didn't have them. And also another special shout out to someone I've grown so close to in a fairly short amount of time. Thank you for driving 2 hours just to come see me in the hospital. You are a bright light when my world goes dark. Your Godly encouragement, support and comfort have been such a blessing. To all who share my burdens and help keep me standing when the world beneath me crumbles, thank you.