Another holiday in the hospital

Happy Easter! I'm used to being in the hospital for holidays by now... really its kind of a tradition haha. Might as well pull some positive out of it right?

Well since Tuesday there's been ups and downs.

Wednesday I had an unexpected treatment so I had treatments 2 days in a row. That was because they wanted 3 treatments this week but because we didn't start until Tuesday they decided to double up to fit them in (they don't do them on the weekend unless of emergency). I was nervous about 2 days in a row but Wednesday I did feel better! Better as in better than coming out of sedation. Aside from the still constant pain from the line placement. It kicked me back to where I was coming into the hospital (because line placement set me back). Thursday I had a day off and probably overdid it. By overdid it I mean take a shower, walk around the room a few times, have my first visitor in addition to my parents. Then I started declining a bit. Friday I got another treatment and that one didn't seem to do much. I seem to be at a stand still since Thursday still pretty much at the point I was entering the hospital- can only do so much with lots of breaks and sometimes flair up really bad and other times a little better.

Today was definitely a weaker day. I didn't do anything differently, I know it's Easter but it's not like we did an egg hunt... ok just kidding we TOTALLY DID! lol Just a little one in my room and I was only able to find about 7 eggs hidden easily before I had to lay down. But that's no different than my daily walking around the room. So I'm not sure what it was... perhaps my Dunkin Donuts iced coffee. That sounds weird but here's the thing. Back in Chicago I had a DD iced coffee and a donut and that day I became much weaker. A few days later I thought hey I wonder if it was DD... because too much sugar does make my MG bad. So I thought next time I won't get a donut, just coffee- and I never get sugar in my coffee. Well a while later I had DD coffee, no donut and again- had a weaker day! I thought it definitely just must be by coincidence. Now today I wasn't even thinking about it, just had my DD coffee and then I started rapidly going downhill. I said what did I do differently today? Then like a lightbulb in my head... I had DD coffee!! Could there really be something in it making MG worse?? Who knows. I think I'm off it though just in case... hasn't been quite as delicious as I remembered anyways. I also needed my first breathing treatment since being in the hospital today. My airways totally tightened up on me. Kinda freaked me out a bit because that partnered with the weakness made me think they might have to do that emergency plasmapheresis treatment. But the breathing treatment opened up the airways and the rest brought me back to stable condition with just typical weakness... as long as I didn't get out of bed. Man my butt hurts this bed is SO uncomfortable! LOL

But thank you God, so far the plasmapheresis has been alright. I was expecting to jump back to pre-MG because that's what I heard from other MG patients. But I have to remember this is the snowflake disease because no two MG patients are alike. So it hasn't done that much for me so far but I'm thankful that it hasn't caused much side effects! Thank you God!!! Seriously since I get just about every side effect! The only thing that I've gotten is tingling in my fingers/hands and face. That's a known one and when it happens they up your calcium. So all was ok. Another thing that's happened is this flashing little lights/stars type of thing... it's happened once before when I was on plaquenil but it's known to happen on plaquenil. No one can tell me why its happening this time. It started after the first plasmapheresis really bad then tapered off. And lastly, my blood pressure started dropping and heart rate rising again. This happens every time I am in the hospital or not in the hospital but not feeling well. The lowest this time is 80something over 50something... thankfully not in the 40s like once before. But that's still concerning. My heart rate goes from normal to jumping to 130. I'm on the heart monitor again. I don't think I've been in the hospital without it.

So, overall staying here has been FAR from fun. I thought the hospitals I've stayed at in the past were bad... this tops them... or I should say bottoms them... however you want to look at it, it's not cool. I keep reminding myself I am here for the surgeon. The doctor team does seem knowledgeable, the plasmapheresis team is very good... but everything else, yikes. Maybe I'm a rare occurance, maybe it's because of the holiday, or maybe it's true since the reviews I read aren't good at all about being inpatient here. First, the food is horrible! I'm not talking it tastes bad, I'm talking it is SO unhealthy! It's a hospital and they are giving us all this prepackaged, sugar loaded, processed nasty stuff. I'm actually craving a super healthy meal. It's disgusting eating this stuff. I want organic, hormone/antibiotic free, fresh food! Uggh. I've felt sick 2 nights from the food here. Anyways. Then there is the problem with my medication. HOW many people do I have to talk to to straighten this out? It is absolutely ridiculous. I take my MG med every 3.5 hours. It needs to be spaced out like that in order to "keep me working." I told them this, I even gave them a print out of all my info in very clear detail. Yet they started it at 3 times a day... umm do you want me to go into a crisis scenario? So then they changed it to every 3 hours. Ok taking it too often is just as bad as taking it not enough. Then they went back to 3 times a day. Then every 4 hours but they were never on time. Now hold that thought for a minute. Add an additional problem. Waking me up at night. I'm not talking normal wake up at a hospital. I'm talking more times than I could count for unneccesary reasons. I can understand vitals and neccesary meds. However, I do not require any meds at night. I ONLY take my MG med at night if I wake up and need it. If I set an alarm every 3.5 hours over night I wouldn't get any deep sleep. They woke me up for meds I was not supposed to take over night, in addition to meds I don't even take at all but they were trying to give me, woke me up for vitals more than once or twice, woke me up to come in the room to clear the garbage- in the middle of the night!!, woke me up to INTRODUCE THEMSELVES! Are you kidding me!!?? Ok so a couple nights ago I couldn't take it anymore. I was nice, I asked repeatedly, I explained, etc. Well when the other night I got woken up 3 times in 3 hours, enough was enough. Let's just say that nurse will probably try to avoid me at all costs. I yelled, I definitely yelled... because she was trying to give me codeine in the middle of the night something I've never taken and absolutely would not take without food especially when I have GI issues, and she forced me to take my MG med at 3 hours which not only do I not take at 3 hours but I don't take overnight, and she turned on all the lights and started questioning me on what I told her. That was IT! I asked for a supervisor and she kept arguing me. I said I am the patient not her, I know my body, I know when I take my meds, I am luckily coherant enough to know you are giving me wrong meds at the wrong time. I said do NOT wake me up again and go get me a supervisor. Well she left and I called my mom super angry with the situation I just encountered. Yes my mom stays up later than I do. Well some lady came in, and I highly doubt it was the supervisor, I looked at her while talking to my mom and she then walked out.

The next morning there is a sign outside my door in large letters stating not to wake this patient up over night! haha So the past 2 nights I've gotten more sleep and the nurses have gone over my med times with me and have listened to me. Hopefully it stays this way. It only took some yelling, a call from my mom, asking for a supervisor, and explaining the craziness to my doctor. Goodness. But really, how is an MG patient supposed to improve without sleep? Short of a miracle, it's impossible.

So that's that as far as my progress and my stay here. The next treatment is scheduled for tomorrow and then  probably Wednesday and they are still thinking I'll be well enough to stop there, line removal Thursday and then discharged home a few days before coming back for the surgery next Tuesday. We shall see.

Overall, Easter was good. The saying "It's not where you are but who you're with" has been proven true over and over. I am so blessed for the family and friends in my life who have shown such support and altered their schedules for me. My parents have visited almost every day and spent their second holiday in just a few months with me in the hospital. I had friends visit every day since Thursday- which was the first day I said people could visit because I was too weak. I've received cards, emails, flowers, Easter baskets, decorations, coloring books (so fun when in the hospital!), and so many treats! I just want to tell everyone who has provided support or love of any kind, THANK YOU! A very huge loving Thank you! It is very much appreciated for everyone making my stay better than it would be without you and for making my Easter as normal as possible. I mean come on, I was given an Easter egg hunt today! How cool is that! I haven't gone a year without one by the way... they are just too fun. I had some awesome bunny ears to wear. But I must say the highlight of the day today was my dad making himself at home in the room. He took off his shoes and reclined on the recliner... normal but when he had to walk down the hall he didn't put his shoes back on. The funny part was seeing him walk out of the room, having a nurse walk by look down at his feet, look at him and do a double take with the oddest look on his face. Ok that doesn't sound too funny, I guess you had to be there, it was pretty funny lol. I mean what visitor takes their shoes off in a hospital?? LOL Oh and then my mom put on some of the hospital gloves to clean my dad up after eating dinner. Awesome. Yes, I took a picture hahaha.

Alright, I'm tired, I think that's all for now. Happy Easter everyone! Remember the reason for the holiday. God bless!