I've been on the medication for about 2 weeks now...upping the dose so so slowly. The goal is a whole pill twice a day. I was able to cut the pill down to 1/8 pill twice a day to start. The first night was REALLY rough. It's a miracle I didn't crash to the ground at 2am. I woke up feeling so incredibly sick and about to pass out any second. I got up to change the battery on my heart monitor (oh yeah I'm wearing a 30 day heart monitor- but don't worry I can take it off to shower lol) I immediately just about fell back into bed and laid down. The next day still felt pretty sick, but then it was ok. I think it was that initial effect of my body saying "no!" By ok I mean I've been feeling weaker than usual, more stomach aches/nausea and dizziness than usual, but not to the point of preventing me from doing the things I absolutely have to do... until today.
Yesterday I felt kind of sick. I had aquatic therapy and didn't think I would make it. Well it just so happened I had an open cut or something on my leg so we only did massage therapy. Exactly what I needed, laying there getting a massage. Except, it wasn't. It was exactly what I didn't need. There were two patients there before me and them and the two that work there were talking away SO loudly- you know how women get when they are excited about something- that's what it was. And what was it about? Food. The last thing I wanted to hear about as my stomach was not at all feeling good. Sensory overload was in effect and I probably looked really rude but I had to completely tune them out. Side note- we are ending aquatic therapy. When I just recently saw my neurologist we decided it doesn't seem to be helping much if at all. My thought- duh, exercise makes MG worse, but I did it to prove to him it's not "just POTS" affecting me right now.
Anyways, back to my story. Today I woke up so much worse. Oh my goodness. I'm typing this now feeling pretty sick... and I say pretty sick as opposed to really sick because as long as I sit or lay and barely move and don't eat or drink anything then I don't reach the point of really sick. But that's pretty difficult to do. I have to get up about once an hour if even just to pace the room because of the whole blood clot risk. And I have to attempt to eat and drink something because of course not eating or drinking is not good for you, but it's especially not good when you have MG and POTS. My body is so weak. My low grade fever is back but higher than my normal low grade fever. I took zofran which helped a little but not enough to allow me to eat or do anything normally. Oh and my brain isn't working very well either. I can tell my thoughts are coming out scattered right now but when I was typing to someone earlier I couldn't remember anything. Anyways, about all I have in me right now are some carrots and celery. I'm going to try to eat a few more later and add some peanut butter to it. I've lost 5 lbs since starting the medicine which is ok since I gained some since my return to Chicago (darn you pizza and beef!) but if I keep losing that wouldn't be good. This is so not fun.
Right now I just pray and pray and pray that these symptoms subside in time for Thanksgiving. Last year this time I was in the hospital for 6 weeks. I don't want a repeat. I thank God I'm at home, or my parents home, as opposed to the hospital. I pray that I can continue to get in enough fluids here that I don't need IV fluids in the hospital. I pray that the medication making me worse before it makes me better only happens this once and doesn't last long. I pray that I can eat enough to not pass out. Please God hear my prayers and help me through this. And I thank You Lord for staying with me and carrying me through it as You have been! You are my strength and my everything.
I keep telling myself I can do this. I keep reminding myself I am more than the symptoms that try to bring me down. I keep thanking God for strengthening me through it all. I need to stay focused on getting healthy and remember this is just a short term thing that is happening in order for me to get healthier. I forget the fact that their are no promises when it comes to your health and I forget the idea that remission is not in my future. I can do this! I can do all things through Christ who strengthens me. Philippians 4:13 I keep repeating that verse because I literally live by it these days.
Either last night or this morning (when you're half a sleep it all blends together) I thought about something. So many people say "don't let your illness/disease/condition/sickness/whatever define you." I disagree. Let it define you! Just don't let it defeat you. My illness does define me. Why? Because I fight through it every single second of every single day and due to the fact that I'm still here I can say I'm beating it. It's not something I can walk away from like those who define themselves by their job or even other people, that they can walk away from. If you can't beat them, join them sort of thing... I took what I was given and I turned it into a passion of writing and an enjoyment of designing. The devil may be trying to use this illness to knock me down, but with God I will use it to keep on stepping up. If I didn't have MG or POTS or candida, I wouldn't be the person I am today. I wouldn't have opened my eyes and see the value in each and every single thing and person. I wouldn't have lost so much anxiety and fear and gained so much trust in the Lord. I wouldn't have known that I could do this completely on my own (with God of course and my parents and support of friends but you know what I mean). So yes, I let this illness define me because I'm a better person because of it.
Fall down seven, stand up eight.... or in my case fall down 4572543754, stand up 4572543755.
Praise God! Amen!
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