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!
Sunday, March 31, 2013
Tuesday, March 26, 2013
In the hospital
Hi everyone! Well at this time yesterday, I was pretty much unable to function... but right now I'm doing alright. I thought I'd take the opportunity of feeling ok to let everyone know what's been happening. If you don't want to read all about it, then I'll just cut to the point and say I'm doing alright just in quite a bit of pain. But if anyone wants to know or any other MG patients who haven't been through line placement or plasmapheresis before, this will give you a good idea of what happens.
I arrived to the hospital yesterday around 7:30am, had to wait a little bit to get to my room but not nearly as hectic and stressful as expected. After arriving a billion different doctors kept visiting making it well apparent I was at a teaching hospital. The worst part was being unable to eat since dinner the night before. I get really weak really quick when I don't eat. But I wasn't allowed to until after the line placement. Finally they came to get me for the line placement shortly after noon but I laid down in IR for hours. Apparently it was an extremely busy day for them. I was told all along I could ask for sedation if I wanted it. Well I asked, and asked, and asked, and finally asked saying I didn't not eat this long for nothing and was told ok. So glad I was persistent. It was not exactly a comfortable thing to go through.
I didn't get the sedation until after all the prepping. Now I've not had a surgery since I was 4 or 5 years old so I've not been through all this. They laid me on this table, put on a sweet hat, had me turn my head, ultra sound the area, taped all these cloths and stuff around one exposed area of my neck/chest, cleaned it, had all the equipment out in site (scary) then made me feel claustrophobic with some machine just a few inches above my head. Then they gave me the sedation so that I got tired and loopy but didn't fall asleep. At that point I was half terrified half thinking it was funny (sedation). I told the doctor he had to tell me every single thing he did LOL. Injecting the lidocane multiple times in the neck wasn't pleasant. After that I felt weird sensations and swear I could feel the line moving through me but I don't know. The thing that made me most queasy was feeling him stitch me up after.. I didn't feel it like pain but just the sensation of threading or something like that.
So then it was over and I was still numbed up and out of it from sedation. I started laughing at basically nothing and was telling the nurse how to help me from the table to the bed and asked her to lift my head up for me. I do sometimes need that because my neck is so weak but I think at that moment I was just having fun with it because of the sedation lol. I got back to the room where the plasmapheresis doctor was talking to my parents. He said they could do it right away and I shook my head no. I kept telling him I was sedated. I really loved that sedation lol. So he said alright we'll do it tomorrow and I gave him a thumbs up and a smile haha. I told my parents not to pay attention to anything I say that seems weird.
Well then the numbing started wearing off and pain setting in. And the weakness was horrible. I think I got a little droopy eye for the first time... that's the one MG symptom I've luckily not had yet. Sedation can make MG worse so they have to be extra cautious. They had my meal waiting for me but I had no strength to eat. Now this I don't even want to say, as this hasn't happened since I was a kid, but my mom had to feed me :( And it took me forever. I remember the doctors coming in and asking if I was going to eat with the food still in front of me and I told them I had been, and it felt like I had been eating for an hour already. The pain got really bad. One thing I wasn't prepared for was this amount of pain after the line placement. If it's this bad for this I can't imagine what I'm going to feel after the major surgery. They have me on pain meds round the clock but it's still pretty bad.
I barely got any sleep, literally if any at all, last night. The pain, the new environment and the fact that the el blasted by what seemed like constantly kept me awake. I'm a light sleeper so I brought my ear plugs and eye mask and even that didn't allow me to sleep. This morning I was still in a lot of pain and weak. I definitely had gotten worse so far rather than better, but to be expected at that point. So then the big plasmapheresis machine came in. That by itself is a little nerve racking. But the doctor and nurse were awesome and went over the process in detail with all risks and explained everything every step of the way. Loved my plasmapheresis nurse! So she hooked everything up and before I knew it my blood was going out and already coming back in- minus bad MG part of the blood! I couldn't have asked for a better first plasmapheresis treatment. The only issues I had was tingling in my hands which is a sign of too low calcium so they just added more calcium into the blood going back in me. And 2 hours later (so much shorter than I expected since my IVIG treatments took foreverrrr like 9-14 hours!!) I was done!
I was told not to get up for a while after except being helped to the bathroom because you can get weak after treatment, so I had to rest most of the day. But I'm feeling better than yesterday for sure. I don't think I'm better than I was entering the hospital, but the pain from the line is really swaying the results on that. The pain is not just at the sight but going up my neck, down my chest, down my back and my shoulder and arm. It's also a stiffness feeling. So it's really affecting my movement and ability to tell how much this first treatment helped.
The treatments were supposed to be every other day but they only do them on the weekend in case of emergency so in order to still get 3 treatments in this week they are going to do another treatment tomorrow and then one Friday. It still depends on how I do and won't know for sure til the time comes, but right now they are talking about my last treatment being next Wednesday, with line removal on Thursday and probably being discharged (just in time to be home for my birthday!) home a few days before surgery. I'm torn on that though not worrying about it since I can't determine it. Getting to go home means I can get some decent sleep and shower normally without plastic covering my line and being extra cautious. But of course that means having to pack everything up then bring it back, and being readmitted, and of course my biggest concern of those extra days of making absolutely certain I don't come in contact with anything that can weaken me in any way. Only time will tell.
Overall, it's been fairly smooth. For a teaching hospital, it's a lot less crazy than I expected. I got my private room without any need to argue for it lol. Apparently they go off medical history and mine says it's a go! Yay! The worst is just this ongoing bad pain from the line. But because of this I know I want to be very clear with my surgeon that I'm ok with whatever pain meds he wants to give me for the major surgery. I hate taking medicine but I also hate being in pain to the point of being unable to eat on my own.
If anyone wants to visit just try to check in with me before. Just want to make sure I'm up for it and you aren't just sitting here watching tv. Thanks for reading! Writing takes my mind off everything for a bit. Hopefully I keep getting better from here! That's the goal!
I arrived to the hospital yesterday around 7:30am, had to wait a little bit to get to my room but not nearly as hectic and stressful as expected. After arriving a billion different doctors kept visiting making it well apparent I was at a teaching hospital. The worst part was being unable to eat since dinner the night before. I get really weak really quick when I don't eat. But I wasn't allowed to until after the line placement. Finally they came to get me for the line placement shortly after noon but I laid down in IR for hours. Apparently it was an extremely busy day for them. I was told all along I could ask for sedation if I wanted it. Well I asked, and asked, and asked, and finally asked saying I didn't not eat this long for nothing and was told ok. So glad I was persistent. It was not exactly a comfortable thing to go through.
I didn't get the sedation until after all the prepping. Now I've not had a surgery since I was 4 or 5 years old so I've not been through all this. They laid me on this table, put on a sweet hat, had me turn my head, ultra sound the area, taped all these cloths and stuff around one exposed area of my neck/chest, cleaned it, had all the equipment out in site (scary) then made me feel claustrophobic with some machine just a few inches above my head. Then they gave me the sedation so that I got tired and loopy but didn't fall asleep. At that point I was half terrified half thinking it was funny (sedation). I told the doctor he had to tell me every single thing he did LOL. Injecting the lidocane multiple times in the neck wasn't pleasant. After that I felt weird sensations and swear I could feel the line moving through me but I don't know. The thing that made me most queasy was feeling him stitch me up after.. I didn't feel it like pain but just the sensation of threading or something like that.
So then it was over and I was still numbed up and out of it from sedation. I started laughing at basically nothing and was telling the nurse how to help me from the table to the bed and asked her to lift my head up for me. I do sometimes need that because my neck is so weak but I think at that moment I was just having fun with it because of the sedation lol. I got back to the room where the plasmapheresis doctor was talking to my parents. He said they could do it right away and I shook my head no. I kept telling him I was sedated. I really loved that sedation lol. So he said alright we'll do it tomorrow and I gave him a thumbs up and a smile haha. I told my parents not to pay attention to anything I say that seems weird.
Well then the numbing started wearing off and pain setting in. And the weakness was horrible. I think I got a little droopy eye for the first time... that's the one MG symptom I've luckily not had yet. Sedation can make MG worse so they have to be extra cautious. They had my meal waiting for me but I had no strength to eat. Now this I don't even want to say, as this hasn't happened since I was a kid, but my mom had to feed me :( And it took me forever. I remember the doctors coming in and asking if I was going to eat with the food still in front of me and I told them I had been, and it felt like I had been eating for an hour already. The pain got really bad. One thing I wasn't prepared for was this amount of pain after the line placement. If it's this bad for this I can't imagine what I'm going to feel after the major surgery. They have me on pain meds round the clock but it's still pretty bad.
I barely got any sleep, literally if any at all, last night. The pain, the new environment and the fact that the el blasted by what seemed like constantly kept me awake. I'm a light sleeper so I brought my ear plugs and eye mask and even that didn't allow me to sleep. This morning I was still in a lot of pain and weak. I definitely had gotten worse so far rather than better, but to be expected at that point. So then the big plasmapheresis machine came in. That by itself is a little nerve racking. But the doctor and nurse were awesome and went over the process in detail with all risks and explained everything every step of the way. Loved my plasmapheresis nurse! So she hooked everything up and before I knew it my blood was going out and already coming back in- minus bad MG part of the blood! I couldn't have asked for a better first plasmapheresis treatment. The only issues I had was tingling in my hands which is a sign of too low calcium so they just added more calcium into the blood going back in me. And 2 hours later (so much shorter than I expected since my IVIG treatments took foreverrrr like 9-14 hours!!) I was done!
I was told not to get up for a while after except being helped to the bathroom because you can get weak after treatment, so I had to rest most of the day. But I'm feeling better than yesterday for sure. I don't think I'm better than I was entering the hospital, but the pain from the line is really swaying the results on that. The pain is not just at the sight but going up my neck, down my chest, down my back and my shoulder and arm. It's also a stiffness feeling. So it's really affecting my movement and ability to tell how much this first treatment helped.
The treatments were supposed to be every other day but they only do them on the weekend in case of emergency so in order to still get 3 treatments in this week they are going to do another treatment tomorrow and then one Friday. It still depends on how I do and won't know for sure til the time comes, but right now they are talking about my last treatment being next Wednesday, with line removal on Thursday and probably being discharged (just in time to be home for my birthday!) home a few days before surgery. I'm torn on that though not worrying about it since I can't determine it. Getting to go home means I can get some decent sleep and shower normally without plastic covering my line and being extra cautious. But of course that means having to pack everything up then bring it back, and being readmitted, and of course my biggest concern of those extra days of making absolutely certain I don't come in contact with anything that can weaken me in any way. Only time will tell.
Overall, it's been fairly smooth. For a teaching hospital, it's a lot less crazy than I expected. I got my private room without any need to argue for it lol. Apparently they go off medical history and mine says it's a go! Yay! The worst is just this ongoing bad pain from the line. But because of this I know I want to be very clear with my surgeon that I'm ok with whatever pain meds he wants to give me for the major surgery. I hate taking medicine but I also hate being in pain to the point of being unable to eat on my own.
If anyone wants to visit just try to check in with me before. Just want to make sure I'm up for it and you aren't just sitting here watching tv. Thanks for reading! Writing takes my mind off everything for a bit. Hopefully I keep getting better from here! That's the goal!
Saturday, March 23, 2013
Great Article
I just read an article sent to me from a friend and it inspired me to write. Though the person who wrote this article has Lupus, not Myasthenia Gravis, the way she describes her day and her struggles is very similar. I have some friends who have Lupus and I know how hard it is for us to coordinate getting together because we both need to be having a good day. What a creative way to help others understand what someone with a chronic illness goes through! I encourage everyone to read this excellent article. Article
What this made me think about is the fact that when others see me, they only see me at that moment. They haven't seen what I've been doing, or should say, not doing the hours or days before that. 2 blogs ago I touched upon why it is I hide out if others are around that aren't specifically a visit for me, but I didn't go into what it takes if I don't hide out, if that visit IS for me. It very much relates to this article, but I'll give you my own perspective.
When I was an event planner, I often felt unappreciated. See you put hours, days, weeks, sometimes even months into planning an event that may be as short as an hour. Everyone who attends that event only sees the event itself. They don't see what it took to make that happen. They don't see or even think about the amount of time, energy and effort it took.... to put together that slide show, to create and order the signage, to individually stamp and address each and every invitation, to repeatedly call the speakers, to determine set up for the room and then redo it when someone cancels, etc. Prior to the event I was the go to person. The day of the event, I was pretty much a nobody in the eyes of attendees. The best feeling was when during an event someone would recognize me for the effort that went on behind the scenes, to be thanked for making it all happen.
So anyways, think of the moment I spend with others as the event, and everything else as the preparation for the event (where all the work is but goes unseen). When I first wake up in the morning I am in so much pain and so stiff. Sometimes it takes quite some time to get my body moving. Sometimes I have to use the muscles that are working properly to throw myself in a certain direction to make up for the muscles not working properly. I keep a little snack by the bed so upon waking I can eat it to take my medicine without having to walk downstairs. I usually then sit up in bed a little longer and read or just lay there until my body feels ok. I go to take a shower and here at my parents they have one that has a switch on the top to turn from coming out the top or to come out the handheld one. If they forget to turn it, reaching up there and turning it wears me out a bit, sounds ridiculous but its true. So then I shower and I get cold so easily but heat makes MG worse so I try to find a good balance which seems to not exist. Oh and if I'm having a really bad day, a shower is not even on the list (don't worry I don't go out on those days either haha). So then I have to dry my hair and that's not the easiest because holding anything for a long period of time (long as in more than 10 seconds) is exhausting. If my arms aren't having a good day I don't dry my hair. When in Tx I would sit on the computer chair while doing all this but here I've lately had more energy and using a chair isn't as accessible here. So by the time I am finished getting ready, I'm really wiped. I have to take a few hours and do nothing pretty much to regain some strength/energy.
In the current status I'm in (as in how I'm doing healthwise) I have been picking one thing to do almost each day. As in yes, some days I don't get much of anything done. So that means after my long rest break, for example today I'm doing my laundry. I've cut it down to only doing 1 load a day because just putting the clothes in the machine, transferring them to the dryer, and taking them out is a lot of work for me. Someone else carries the laundry basket down the stairs and back up the stairs and my mom's been helping with hanging everything up. So that's my "activity" for today. The rest of the time depending on how I feel I will just lay around literally not doing anything because I can't or take care of a few things such as medical bills, or read. Whatever I do I need not be standing or walking for any extended period of time, but I also need to get up from being seated or laying because then I get stiff and in pain. Movement vs. rest needs to have a perfect balance. Another example was yesterday I went to lunch with a friend. Where we decided to go was determined by which restaurant had parking right by the door. Going out is no longer a hop in the car and go wherever. We could take the wheel chair but I hate having the extra hassle if not completely necessary. Well all morning I rested to do that and then upon coming back she asked what the rest of my day would consist of. Answer: nothing. It's somewhat funny but it's true. I used my "spoons" like the article says, to go out for lunch that day. And it was awesome to finally catch up with her! My days are also much determined by my body... some days my upper body is stronger and lower weaker and somedays reverse... so I'll make that days focus on whatever part of my body is working best.
The main reason I wanted to make a point of this is because of often hearing "you look fine." We already have talked about how look does not correlate with whats happening inside me. However, furthermore, perhaps the reason I look fine at that *moment* in time you see me is because I prepared for it. I have noticed more and more lately how wonderful I feel. Even as the person going through this, I had to make a point of figuring out why, and this article helped me do just that. It's because when I know I have something coming up- friends visiting, a doctor's appointment, etc. I take all measures I can to prepare to be able to do that one thing and I put a lot of my "spoons" towards it. But also keep in mind, MG is not always something you can prepare for so things change a LOT. Patience and flexibility is definitely being taught to me.
Yes I decorated my room here... but how long did it take? Forever! And I didn't even physically do anything in regards to placement of furniture, hanging things up etc. I have this to do list that seems to keep growing because everything takes much longer than it used to with rest breaks, and when it comes down to something on the to do list or seeing a friend, I may choose to see a friend.
So when you're at an event, watching a theatre performance, or hanging out with someone with a chronic illness... think about the behind the scenes effort that goes into it, think about the "spoons" that were used so that very moment could happen. And thank you for spending that time with me even if it has to be planned out a certain way, cut short on time or rescheduled.
As always, thanks for reading! :)
What this made me think about is the fact that when others see me, they only see me at that moment. They haven't seen what I've been doing, or should say, not doing the hours or days before that. 2 blogs ago I touched upon why it is I hide out if others are around that aren't specifically a visit for me, but I didn't go into what it takes if I don't hide out, if that visit IS for me. It very much relates to this article, but I'll give you my own perspective.
When I was an event planner, I often felt unappreciated. See you put hours, days, weeks, sometimes even months into planning an event that may be as short as an hour. Everyone who attends that event only sees the event itself. They don't see what it took to make that happen. They don't see or even think about the amount of time, energy and effort it took.... to put together that slide show, to create and order the signage, to individually stamp and address each and every invitation, to repeatedly call the speakers, to determine set up for the room and then redo it when someone cancels, etc. Prior to the event I was the go to person. The day of the event, I was pretty much a nobody in the eyes of attendees. The best feeling was when during an event someone would recognize me for the effort that went on behind the scenes, to be thanked for making it all happen.
So anyways, think of the moment I spend with others as the event, and everything else as the preparation for the event (where all the work is but goes unseen). When I first wake up in the morning I am in so much pain and so stiff. Sometimes it takes quite some time to get my body moving. Sometimes I have to use the muscles that are working properly to throw myself in a certain direction to make up for the muscles not working properly. I keep a little snack by the bed so upon waking I can eat it to take my medicine without having to walk downstairs. I usually then sit up in bed a little longer and read or just lay there until my body feels ok. I go to take a shower and here at my parents they have one that has a switch on the top to turn from coming out the top or to come out the handheld one. If they forget to turn it, reaching up there and turning it wears me out a bit, sounds ridiculous but its true. So then I shower and I get cold so easily but heat makes MG worse so I try to find a good balance which seems to not exist. Oh and if I'm having a really bad day, a shower is not even on the list (don't worry I don't go out on those days either haha). So then I have to dry my hair and that's not the easiest because holding anything for a long period of time (long as in more than 10 seconds) is exhausting. If my arms aren't having a good day I don't dry my hair. When in Tx I would sit on the computer chair while doing all this but here I've lately had more energy and using a chair isn't as accessible here. So by the time I am finished getting ready, I'm really wiped. I have to take a few hours and do nothing pretty much to regain some strength/energy.
In the current status I'm in (as in how I'm doing healthwise) I have been picking one thing to do almost each day. As in yes, some days I don't get much of anything done. So that means after my long rest break, for example today I'm doing my laundry. I've cut it down to only doing 1 load a day because just putting the clothes in the machine, transferring them to the dryer, and taking them out is a lot of work for me. Someone else carries the laundry basket down the stairs and back up the stairs and my mom's been helping with hanging everything up. So that's my "activity" for today. The rest of the time depending on how I feel I will just lay around literally not doing anything because I can't or take care of a few things such as medical bills, or read. Whatever I do I need not be standing or walking for any extended period of time, but I also need to get up from being seated or laying because then I get stiff and in pain. Movement vs. rest needs to have a perfect balance. Another example was yesterday I went to lunch with a friend. Where we decided to go was determined by which restaurant had parking right by the door. Going out is no longer a hop in the car and go wherever. We could take the wheel chair but I hate having the extra hassle if not completely necessary. Well all morning I rested to do that and then upon coming back she asked what the rest of my day would consist of. Answer: nothing. It's somewhat funny but it's true. I used my "spoons" like the article says, to go out for lunch that day. And it was awesome to finally catch up with her! My days are also much determined by my body... some days my upper body is stronger and lower weaker and somedays reverse... so I'll make that days focus on whatever part of my body is working best.
The main reason I wanted to make a point of this is because of often hearing "you look fine." We already have talked about how look does not correlate with whats happening inside me. However, furthermore, perhaps the reason I look fine at that *moment* in time you see me is because I prepared for it. I have noticed more and more lately how wonderful I feel. Even as the person going through this, I had to make a point of figuring out why, and this article helped me do just that. It's because when I know I have something coming up- friends visiting, a doctor's appointment, etc. I take all measures I can to prepare to be able to do that one thing and I put a lot of my "spoons" towards it. But also keep in mind, MG is not always something you can prepare for so things change a LOT. Patience and flexibility is definitely being taught to me.
Yes I decorated my room here... but how long did it take? Forever! And I didn't even physically do anything in regards to placement of furniture, hanging things up etc. I have this to do list that seems to keep growing because everything takes much longer than it used to with rest breaks, and when it comes down to something on the to do list or seeing a friend, I may choose to see a friend.
So when you're at an event, watching a theatre performance, or hanging out with someone with a chronic illness... think about the behind the scenes effort that goes into it, think about the "spoons" that were used so that very moment could happen. And thank you for spending that time with me even if it has to be planned out a certain way, cut short on time or rescheduled.
As always, thanks for reading! :)
Friday, March 22, 2013
Plan to not plan
Hi everyone! Well it looks as if, God willing of course, this is finally going to happen! Once again I had to coordinate my own admission and pre-certification, but whatever, I'm used to it now. Is God preparing me to become knowledgeable in a billion different jobs so that when I'm able I have my choice of any?? Hey why not. Anyways...
Admission to [name removed] at 8am Monday, March 25th. They said they will probably do the minor surgery for line placement that day and plasmapheresis treatments starting either Monday or Tuesday. The plan is to get treatments every other day estimating 10 days, 5 treatments. But as I titled this, plan to not plan because I've learned by now plans don't actually happen as planned.
The purpose of plasmapheresis treatments is to prep my body to tolerate surgery. Surgery is set to take place April 9th.
We will not know until I get going on treatments exactly how many will be needed, how long it will take, or if I'll be discharged home or stay there up until surgery. We also won't know how well my body tolerates all of this. I've heard of other MG patients doing absolutely fine and feeling like they used to before MG and I've also heard of other MG patients who have flat lined out. Hey, let's pray for the best here, ok?
I would LOVE to have visitors if I'm feeling up to it unless of course you don't mind sitting next to someone laying in a hospital bed too weak to talk... that's cool too. Talking on the phone isn't my favorite especially if my arms are weak. I'll be on the computer as soon as and as much as I can.
I've been back in IL 2 months now. I thought this surgery would have been over and done with by now. But again maybe this is for the best. The first month was filled with doctor appointments and I was still really weak. But this second month I've had only a few doctor visits but seen more friends/family and had more time to myself just to take time with my own thoughts. It's been fabulous honestly. Who cares if it could be better? I've done everything I can to make it the best it can be, I can't control others nor am I going to put any effort into trying. It's time for me! I don't want to sound selfish but guess what, until I take care myself and get my health better, I can't possibly have enough in me to focus on others as much as I'd like.
In the past week or so I started getting really nervous about this admission. But I talked to a friend who's had his fair share of hospital visits and surgeries, and he told me to focus on the end result, and that's what I've been doing ever since. And I'm pretty actually very excited for the end result because I'm being optimistic in thinking remission will come my way! And in all that I've been through not only with my health but other stuff some of you know all about, oddly it has filled me with this intense joy... not what it was or what I'm going through and struggling with, but the fact that I'm still pushing along! The fact that I am doing it and I feel happier and happier each and every day, and I'm growing each and every day. God is absolutely amazing! I want to go on and on but I'll save it for another day. For now, know this:
God is my strength. He will carry me through this and everything else I am going through and will later go through. We are given free will but if in our free will we choose His will we will be given so much more than our own minds can even fathom. I hope to one day share my full testimony to this.
Please keep me in your prayers for successful treatment and surgery with no complications, little pain, and leading to full and permanent remission... with those who mean much to me staying in or coming back into my life full of support and love. I know it's a lot to ask but we must not limit God because what He can do is limitless. If you have any intentions you would like to ask, please let me know as I would love to raise you up in prayer... especially with the many many hours I'll have laying in a hospital bed giving me much time alone with myself and God. God bless everyone who is taking the time to read my story. Thank you.
Admission to [name removed] at 8am Monday, March 25th. They said they will probably do the minor surgery for line placement that day and plasmapheresis treatments starting either Monday or Tuesday. The plan is to get treatments every other day estimating 10 days, 5 treatments. But as I titled this, plan to not plan because I've learned by now plans don't actually happen as planned.
The purpose of plasmapheresis treatments is to prep my body to tolerate surgery. Surgery is set to take place April 9th.
We will not know until I get going on treatments exactly how many will be needed, how long it will take, or if I'll be discharged home or stay there up until surgery. We also won't know how well my body tolerates all of this. I've heard of other MG patients doing absolutely fine and feeling like they used to before MG and I've also heard of other MG patients who have flat lined out. Hey, let's pray for the best here, ok?
I would LOVE to have visitors if I'm feeling up to it unless of course you don't mind sitting next to someone laying in a hospital bed too weak to talk... that's cool too. Talking on the phone isn't my favorite especially if my arms are weak. I'll be on the computer as soon as and as much as I can.
I've been back in IL 2 months now. I thought this surgery would have been over and done with by now. But again maybe this is for the best. The first month was filled with doctor appointments and I was still really weak. But this second month I've had only a few doctor visits but seen more friends/family and had more time to myself just to take time with my own thoughts. It's been fabulous honestly. Who cares if it could be better? I've done everything I can to make it the best it can be, I can't control others nor am I going to put any effort into trying. It's time for me! I don't want to sound selfish but guess what, until I take care myself and get my health better, I can't possibly have enough in me to focus on others as much as I'd like.
In the past week or so I started getting really nervous about this admission. But I talked to a friend who's had his fair share of hospital visits and surgeries, and he told me to focus on the end result, and that's what I've been doing ever since. And I'm pretty actually very excited for the end result because I'm being optimistic in thinking remission will come my way! And in all that I've been through not only with my health but other stuff some of you know all about, oddly it has filled me with this intense joy... not what it was or what I'm going through and struggling with, but the fact that I'm still pushing along! The fact that I am doing it and I feel happier and happier each and every day, and I'm growing each and every day. God is absolutely amazing! I want to go on and on but I'll save it for another day. For now, know this:
God is my strength. He will carry me through this and everything else I am going through and will later go through. We are given free will but if in our free will we choose His will we will be given so much more than our own minds can even fathom. I hope to one day share my full testimony to this.
Please keep me in your prayers for successful treatment and surgery with no complications, little pain, and leading to full and permanent remission... with those who mean much to me staying in or coming back into my life full of support and love. I know it's a lot to ask but we must not limit God because what He can do is limitless. If you have any intentions you would like to ask, please let me know as I would love to raise you up in prayer... especially with the many many hours I'll have laying in a hospital bed giving me much time alone with myself and God. God bless everyone who is taking the time to read my story. Thank you.
Wednesday, March 20, 2013
Just a thought
Over the past few days I've realized something and wanted to share. When people come over that are not directly a visit for me, I tend to hide out. The reason for this is not to avoid anyone but because of how my body tolerates everything. If you've read my blog, you know stress makes MG worse. What people don't think about though is that stress can be both good or bad and ways that you tend not to think of stress... perhaps we should replace the word stress, but I don't know what would be an appropriate word to replace it. So let's just talk by example...
Example: Someone who is very high energy. Why do I hide out? Because it drains me. I can't really control this, I could tune them out but that wouldn't be very nice. I don't understand it or know why it happens but it does. There are days I need people to talk slower (even though sometimes I talk a billion words a minute). There are times I can't tolerate sensory things- too many lights, sounds, motions, etc. that most people don't at all notice all seem to fly at my brain at once and it's too much to handle. Whether or not the sensory thing is an MG thing or not I don't know, but it makes my MG worse.
Example: Someone I've never met before. Why do I hide out? Because meeting someone new is slightly stressful sometimes in general, but then I have the added part that they may or may not know I have MG and even if they know they may not know what that means or how it affects me. I either let them think I'm disinterested even though I'm just tired and/or weak and not bring up the MG, or I bring it up and feel like I'm talking too much about myself and/or answer a ton of questions. Whereas someone you already have a solid relationship is mainly comforting, getting to know someone takes effort and that sometimes is enough to make me feel weak.
Example: Anyone but I'm already having a weak day. Why do I hide out? Because even talking is difficult when I'm feeling weak. Focusing is an effort. Walking or standing isn't easy. Again you typically can't see all of that but it's happening inside me.
On top of the MG, around people I don't know I am quiet in general. Though once I get to know you and feel comfortable around you, watch out if I have the energy! haha
So what's a good solution? Well I have yet to have a definite answer on that. I've found it's easier when people understand the situation, if they've read about it or myself or someone else explained it to them. My mom always says, if you need to go lay down or go in another room do it, they will understand. My issue is I hate walking out on someone so if I'm already there I might stay and then be really weak after the fact, or if I'm not there and don't need to be there I might not go there. So if I stay you will probably notice I start fading out. It's not because I don't care or don't want to listen or hang out, but because my body is going downhill and I need to use my energy for what's necessary as opposed to conversing. But I'm trying to find a balance of being able to hang out/converse/visit with others even on weak days while not overdoing it. This is another reason I love emailing/chatting online. Getting to know people or catching up with people from the comfort of wherever I want to sit or lie down, no talking needed.
My hope is that either surgery or medicine or a miracle will put me in remission so that I can do everything without these concerns. But until then, know that if I'm not around a lot, leave or just sit there and don't talk that it's probably not anything to do with you but because I just can't at the moment. Don't take it personally. If you find out a way to telepathically communicate and thus retain my energy, let me know :)
Example: Someone who is very high energy. Why do I hide out? Because it drains me. I can't really control this, I could tune them out but that wouldn't be very nice. I don't understand it or know why it happens but it does. There are days I need people to talk slower (even though sometimes I talk a billion words a minute). There are times I can't tolerate sensory things- too many lights, sounds, motions, etc. that most people don't at all notice all seem to fly at my brain at once and it's too much to handle. Whether or not the sensory thing is an MG thing or not I don't know, but it makes my MG worse.
Example: Someone I've never met before. Why do I hide out? Because meeting someone new is slightly stressful sometimes in general, but then I have the added part that they may or may not know I have MG and even if they know they may not know what that means or how it affects me. I either let them think I'm disinterested even though I'm just tired and/or weak and not bring up the MG, or I bring it up and feel like I'm talking too much about myself and/or answer a ton of questions. Whereas someone you already have a solid relationship is mainly comforting, getting to know someone takes effort and that sometimes is enough to make me feel weak.
Example: Anyone but I'm already having a weak day. Why do I hide out? Because even talking is difficult when I'm feeling weak. Focusing is an effort. Walking or standing isn't easy. Again you typically can't see all of that but it's happening inside me.
On top of the MG, around people I don't know I am quiet in general. Though once I get to know you and feel comfortable around you, watch out if I have the energy! haha
So what's a good solution? Well I have yet to have a definite answer on that. I've found it's easier when people understand the situation, if they've read about it or myself or someone else explained it to them. My mom always says, if you need to go lay down or go in another room do it, they will understand. My issue is I hate walking out on someone so if I'm already there I might stay and then be really weak after the fact, or if I'm not there and don't need to be there I might not go there. So if I stay you will probably notice I start fading out. It's not because I don't care or don't want to listen or hang out, but because my body is going downhill and I need to use my energy for what's necessary as opposed to conversing. But I'm trying to find a balance of being able to hang out/converse/visit with others even on weak days while not overdoing it. This is another reason I love emailing/chatting online. Getting to know people or catching up with people from the comfort of wherever I want to sit or lie down, no talking needed.
My hope is that either surgery or medicine or a miracle will put me in remission so that I can do everything without these concerns. But until then, know that if I'm not around a lot, leave or just sit there and don't talk that it's probably not anything to do with you but because I just can't at the moment. Don't take it personally. If you find out a way to telepathically communicate and thus retain my energy, let me know :)
Monday, March 18, 2013
Thankful
Well I finally got my computer and so far so good! So now I can get on here and post just in time before being admitted 1 week from today (if the plan is successful this time of course). Real quick to give an update- there really is no update- everything is still supposed to happen as it was last time I posted about it... admission March 25th for surgery to put in central line, plasmapheresis treatments every other day for approximately 2 weeks, robotic surgery/thymectomy scheduled for April 9th.... all at [name removed].
So today I wanted to write about my past. There's a reason for this. First, you all would probably get bored if I only write about how my day goes and how my body feels. Second, I'm trying to stay positive and though I've been doing well and it shows in person and on my facebook posts, I noticed it doesn't quite show on my blog posts. So here we go.
When you get diagnosed with a chronic/lifelong illness, one that changes your life upside down, you have two ways of going about it. You can be depressed and sulk in your own misery longing for pity, or you can be happy and feel blessed for what you had before, what you have now and what you'll have to look forward to. I'm not saying it'll be one or the other, it will most definitely be some of both and some you can't completely control BUT overall, your attitude on it will eventually fall on one side or the other. I choose the latter and I want to inspire others to do the same.
Looking back on my life it would be REALLY easy for me to be depressed that I can no longer do much of that. Instead, let's take the other approach. I did a lot, I mean I really did a lot when you dissect it. And that makes me so very happy because I had the opportunity to live, I had the opportunity to do so much in such little time, and most of all, looking back I have no regrets. I choose not to have regrets, because really there is no point. You can learn from your past but you can't change it, so don't regret it.
Starting way back when, I have my parents to thank for getting me involved from the very start, for allowing me to receive life's offerings from so many different angles. Throughout my life I've experienced so many active things that I can't do at the moment but have the memories to hold forever. I did dance, gymnastics, softball, basketball, cheerleading, cross country, track, soccer... of course I was never really good at any of them but that's besides the point, I enjoyed it! The one thing I was really good at but didn't quite enjoy was golf, but hey I can say that I tried it. I loved to rollerblade and ride my bike, I went horseback riding, I scuba dove in a pool, I tried tubing and road a jet ski. I even had the opportunity to surf! And then fairly recently I had started playing tennis for fun, tried out zumba and jazzercize. I'm probably missing some stuff, but gosh I really did a lot in regards to being active.
I've been a lot of places also. I am blessed to have visited both countries of my nationalities. Germany was my absolute favorite, what an amazing trip that was. I went with other classmates over spring break for business credits when most of my friends went to the beaches. I'd choose that trip over the beach any day. Then my family went to Italy and explored much of the country. I discovered I'm much more German than I am Italian (sorry mom). haha. I've also been to Mexico and technically France for a plane transfer. Thanks to my parents I've also been to Hawaii and many other states. And then there have been the road trips with my husband together visiting or passing through 27 states. In addition I've been to a few more on previous business trips. My goal is to see every state during my lifetime... I think I have about 10-15 left, mainly the NE but the hard one will be Alaska and I'm going to try and make it happen. And if my time comes before I make it to every state, I ask that someone finish it out in my honor. The point is, I've traveled and I've traveled a lot while able and what a joy it was.
I am blessed that this illness hit me after completing much of what I wanted to complete in life. I was able to get through school completely healthy for the most part. I didn't ease in, I jumped in and made it my own. I experienced what the saying says "You get out what you put in." In college I was President of 2 organizations, VP of Event Planning for another... I double majored with a double concentration, I completed an internship and an independent study, and I still had fun probably too much fun sometimes, yet still graduated with honors. After college I got my entry level dream job traveling the country planning and executing events. One of my favorite moments was when one of the higher ups couldn't make it and at the very last minute I was able to host. You should have seen my coworkers. They were shocked that quiet little me jumped at the opportunity and stood before these executives speaking at the podium. It was awesome!
And then I got married and we moved 19 hours away. The struggles are irrelevant to my post today because my focus is a positive one. We did it! We lived away from everything and everyone we knew and built a life on our own. I bought a car. I learned to cook. I gained more knowledge of the medical industry than I ever thought I'd know. I made friends, went to groups and meetings completely on my own not knowing anyone. And of course what it all comes back to is that I came to know God and because of Him I am able to look at all of this in a positive light.
I could go on and on, but my point is, I lived! I experienced so much! I was blessed to fit so much into such little time in case, and I do say in case, I may not be able to do it in the future. And even if I can, I want the focus of my future to be on giving to others- thus I am happy to have already received so much in life. I still don't know what my calling or purpose is, but I know I want to help others. When I get through this surgery and recovery and go into remission (hey there positive thinking) I will still be listening to what it is God wants me to do in life and I will do it. So in a very minor way I will start today, by encouraging you all to do some soul searching. Take some time away from the craziness around you, go into a peaceful place, and just be thankful. Be thankful for all that you've done and all that you've received. Be thankful for the people who surround you and encourage you. Be thankful for the positive aspects you can pull from the hard times. Be thankful for life, for love, for you. I could go on and on about turning your focus from the bad to the good but I'll leave that for another day. For now, no matter how hard life seems, no matter how angry you are with someone or something, no matter how unfair it is, no matter anything- be thankful. And on that I'll end with saying thank you- to all of you who are a part of my life in any and every way.
So today I wanted to write about my past. There's a reason for this. First, you all would probably get bored if I only write about how my day goes and how my body feels. Second, I'm trying to stay positive and though I've been doing well and it shows in person and on my facebook posts, I noticed it doesn't quite show on my blog posts. So here we go.
When you get diagnosed with a chronic/lifelong illness, one that changes your life upside down, you have two ways of going about it. You can be depressed and sulk in your own misery longing for pity, or you can be happy and feel blessed for what you had before, what you have now and what you'll have to look forward to. I'm not saying it'll be one or the other, it will most definitely be some of both and some you can't completely control BUT overall, your attitude on it will eventually fall on one side or the other. I choose the latter and I want to inspire others to do the same.
Looking back on my life it would be REALLY easy for me to be depressed that I can no longer do much of that. Instead, let's take the other approach. I did a lot, I mean I really did a lot when you dissect it. And that makes me so very happy because I had the opportunity to live, I had the opportunity to do so much in such little time, and most of all, looking back I have no regrets. I choose not to have regrets, because really there is no point. You can learn from your past but you can't change it, so don't regret it.
Starting way back when, I have my parents to thank for getting me involved from the very start, for allowing me to receive life's offerings from so many different angles. Throughout my life I've experienced so many active things that I can't do at the moment but have the memories to hold forever. I did dance, gymnastics, softball, basketball, cheerleading, cross country, track, soccer... of course I was never really good at any of them but that's besides the point, I enjoyed it! The one thing I was really good at but didn't quite enjoy was golf, but hey I can say that I tried it. I loved to rollerblade and ride my bike, I went horseback riding, I scuba dove in a pool, I tried tubing and road a jet ski. I even had the opportunity to surf! And then fairly recently I had started playing tennis for fun, tried out zumba and jazzercize. I'm probably missing some stuff, but gosh I really did a lot in regards to being active.
I've been a lot of places also. I am blessed to have visited both countries of my nationalities. Germany was my absolute favorite, what an amazing trip that was. I went with other classmates over spring break for business credits when most of my friends went to the beaches. I'd choose that trip over the beach any day. Then my family went to Italy and explored much of the country. I discovered I'm much more German than I am Italian (sorry mom). haha. I've also been to Mexico and technically France for a plane transfer. Thanks to my parents I've also been to Hawaii and many other states. And then there have been the road trips with my husband together visiting or passing through 27 states. In addition I've been to a few more on previous business trips. My goal is to see every state during my lifetime... I think I have about 10-15 left, mainly the NE but the hard one will be Alaska and I'm going to try and make it happen. And if my time comes before I make it to every state, I ask that someone finish it out in my honor. The point is, I've traveled and I've traveled a lot while able and what a joy it was.
I am blessed that this illness hit me after completing much of what I wanted to complete in life. I was able to get through school completely healthy for the most part. I didn't ease in, I jumped in and made it my own. I experienced what the saying says "You get out what you put in." In college I was President of 2 organizations, VP of Event Planning for another... I double majored with a double concentration, I completed an internship and an independent study, and I still had fun probably too much fun sometimes, yet still graduated with honors. After college I got my entry level dream job traveling the country planning and executing events. One of my favorite moments was when one of the higher ups couldn't make it and at the very last minute I was able to host. You should have seen my coworkers. They were shocked that quiet little me jumped at the opportunity and stood before these executives speaking at the podium. It was awesome!
And then I got married and we moved 19 hours away. The struggles are irrelevant to my post today because my focus is a positive one. We did it! We lived away from everything and everyone we knew and built a life on our own. I bought a car. I learned to cook. I gained more knowledge of the medical industry than I ever thought I'd know. I made friends, went to groups and meetings completely on my own not knowing anyone. And of course what it all comes back to is that I came to know God and because of Him I am able to look at all of this in a positive light.
I could go on and on, but my point is, I lived! I experienced so much! I was blessed to fit so much into such little time in case, and I do say in case, I may not be able to do it in the future. And even if I can, I want the focus of my future to be on giving to others- thus I am happy to have already received so much in life. I still don't know what my calling or purpose is, but I know I want to help others. When I get through this surgery and recovery and go into remission (hey there positive thinking) I will still be listening to what it is God wants me to do in life and I will do it. So in a very minor way I will start today, by encouraging you all to do some soul searching. Take some time away from the craziness around you, go into a peaceful place, and just be thankful. Be thankful for all that you've done and all that you've received. Be thankful for the people who surround you and encourage you. Be thankful for the positive aspects you can pull from the hard times. Be thankful for life, for love, for you. I could go on and on about turning your focus from the bad to the good but I'll leave that for another day. For now, no matter how hard life seems, no matter how angry you are with someone or something, no matter how unfair it is, no matter anything- be thankful. And on that I'll end with saying thank you- to all of you who are a part of my life in any and every way.
Friday, March 8, 2013
Time
Sorry for the long gap without a post. It's been a crazy week, not that that's new, but since nothing else is that's what I'll post about.
Last Thursday night, my laptop dies. Here's the story behind that. I got a new laptop in November 2011. Summer-Fall 2012 it started acting up. I went on chat for the store it was from and the person I was chatting with told me bring it in to the store and they will fix it, the warranty covers that. I thought to myself "wow, that's almost too easy." So before driving to the store I called to confirm. I was then told I was given wrong information and unless I have their store protection plan, I would have to pay for repair. I decided to argue this one. I was clearly told they would do it and had the emailed chat convo to prove so; whether or not that is their policy is besides the point. I called corporate to basically be told sorry but they can't do that. Well my mom is a pro at this stuff so she said she would take it from there. Long story short, she reached some man at corporate who said he would be willing to take back my computer and send me a new one. Wow. All I wanted was it to be fixed like they told me they would do, but going above and beyond that alright you'll save me as a customer.
So he was going to replace my laptop but the same one was out of stock because they were coming out with all the new Windows 8 laptops. He said if I can wait I'll get the newer version. Well alrighty. I waited, but then I landed in the hospital, so then he waited. Then there was the commotion of my returning to Chicago, so he waited some more. Finally back here we got it set up to send back my old laptop and have him ship me my new one.
I set everything up, uploaded all my files and programs, and attempted to get used to Windows 8 (not at all a fan! but beggers can't be choosers). I noticed the battery wasn't lasting anywhere near the 7-8 hours it was supposed to but didn't think much of it. So now back to Thursday night. The battery was near 10% and it said to plug it in, so I did, but it didn't start charging. Wonderful. So I tried everything I could think of, a different outlet, taking out the battery, restarting the computer, nothing worked. Called the store and they were nice enough to say bring it over and they would take a look. Well, turns out it is shorting out at the laptop... a new plug wouldn't fix that. Great.
Friday morning, call our man at corporate. He said he would ship another one. But I decided I no longer want this brand since I now had 2 bad computers from it. So he said look and see what I would want. Well next to everything on their website was sold out. On top of that I needed to find a 13 or 14" because that's the size my case is that I received as a gift and didn't want it to go to waste. And unless I wanted to spend more money, I had to stay around the same price. He would even-out the price but I'm guessing not if it were more than $100 over what was originally spent. I only had 2 choices. So I made my decision this week and my new laptop is supposed to arrive next week. I certainly hope this one's a winner! So thankful there are such kind people in this world willing to go above and beyond to help others out.
The reason I say all this is because since my last post I haven't had my laptop so its not as easy to get on and post. And just as I was getting past the stress of everything falling through with the surgery, the computer problems happened which caused more stress. For a few days I was out due to MG flair from the stress. Then I started feeling better and went outside to make a snow angel when all that snow hit, and once again I was out. Apparently snow angels use a lot of muscles. So for the past week I've had to take it quite easy. I'm sure a lot of people are thinking, if stress makes MG worse, don't let it stress you out. Guess what, that's easier said than done. I tried my best to contain it and redirect it, but that doesn't mean it's not a stressful situation and that doesn't mean it won't affect me.
But guess what? That rescheduling of my surgery turned out to be a blessing in disguise if I want to look at the positive side of it, which I do. Because of it, I was able to see about 10" of snow and make a snow angel! Haven't done that in years and wouldn't have been able to if I were in the hospital. Because of it my 2nd laptop crashed within the first 15 days return period so I was able to exchange it and not only that but I'm ending up with a Windows 7 (sounds like a downgrade but I really really don't like Windows 8). I've been trying to "create" my room here at my parents since returning mid January. I've had paint supplies to make wall hangings/decorations sitting around for a couple weeks but never got to it. Because of the extra time and since my laptop crashed I decided that would be a good time to paint. I'm still in the process because lately my arms have been much weaker than my legs, but I've started. I've also been doing more reading, but that also has to be kept to a minimum because my eyes start losing focus. But one thing I found I can do no matter what, listen to music, and what a joy that has brought to my life! I used to listen to music when I was younger, and when I ran, but ever since not being able to run I just kind of left it behind. Well when you lose a lot of options, old options start to reappear and new options start coming into view. Music is now my escape and I'm so happy to have rediscovered it. And... because of the delay I will now be home when my brother is home for spring break, which overlaps a few days that my cousin is home for spring break, which just happens to be the same weekend another Aunt and Uncle will be in town visiting another cousin... so hopefully I will get to see everyone on my mom's side of the family all together for the first time in years!
But guess what? That rescheduling of my surgery turned out to be a blessing in disguise if I want to look at the positive side of it, which I do. Because of it, I was able to see about 10" of snow and make a snow angel! Haven't done that in years and wouldn't have been able to if I were in the hospital. Because of it my 2nd laptop crashed within the first 15 days return period so I was able to exchange it and not only that but I'm ending up with a Windows 7 (sounds like a downgrade but I really really don't like Windows 8). I've been trying to "create" my room here at my parents since returning mid January. I've had paint supplies to make wall hangings/decorations sitting around for a couple weeks but never got to it. Because of the extra time and since my laptop crashed I decided that would be a good time to paint. I'm still in the process because lately my arms have been much weaker than my legs, but I've started. I've also been doing more reading, but that also has to be kept to a minimum because my eyes start losing focus. But one thing I found I can do no matter what, listen to music, and what a joy that has brought to my life! I used to listen to music when I was younger, and when I ran, but ever since not being able to run I just kind of left it behind. Well when you lose a lot of options, old options start to reappear and new options start coming into view. Music is now my escape and I'm so happy to have rediscovered it. And... because of the delay I will now be home when my brother is home for spring break, which overlaps a few days that my cousin is home for spring break, which just happens to be the same weekend another Aunt and Uncle will be in town visiting another cousin... so hopefully I will get to see everyone on my mom's side of the family all together for the first time in years!
I describe things in detail hoping it will give all non-MGers an idea of what a day is like for an MGer, and how little life stressers can bring on crisis situations (thankful that didn't occur this time). Things are different. Things are hard. Things take longer. But things are things. All that I've had to leave behind has opened the door to so much more. God needed to take away some of my abilities in order to redirect my focus onto what matters. Him. I've been and will continue to be a work in progress, but I now have what I didn't have before, Him. And therefore, I now know wherever I go, however tough it is, whatever is thrown at me, I have Him. God is bigger than anyone or anything. He will remove the obstacles, guide me around them, or walk with me through them. God is my strength, and my hope is that anyone who doesn't know God comes to know Him... and does so before something major, like an illness, forces that relationship into focus. God is good, and since God created life, Life is good! Smile!
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