Over a Year! No Problem!

images (1).jpg

I was asked the other day how I was doing and my usual response was I’m GREAT! I have been making sure that I give a better answer than good or okay. I want to give people the impression that you can be something other than the normal at any given time. But when I looked at this person and remembered they were someone who knows me a bit better than the average person and she gave me that look like really..how are you? I thought a bit more about it and said I really am amazing! I have not had a true MG episode that has hospitalized me in well over a year. My last MG hospitalization was January 2015. And it was actually due to a virus that quickly became way more in the form of an intubation and respiratory pneumonia in less than 36 hours. Truly one of the scariest moments of my life. So to think that this was the longest since having MG I have gone without hospitalization and that I can now go 3 months without treatment is really amazing.

I thought after my first few crisis moments. I would never be able to travel again or be able to have a really normal life despite what people said because I was glued to medication and treatments and hospitals. They said everyone was different and mine form of MG was so severe and did not follow anyone else’s trend that I was worried I would never have any sort of freedom. It still does not follow anyone’s trend which is still a tricky thing but it is fine because I have come to embrace that and enjoy that I still get to have a life. I am stable and happy!

Granted I still have days where I am super tired and I am definitely over-worked some days it’s just all about balance and learning limitations. When I am doing too much, my body tells me and I have to learn how to accommodate that and adjust or I suffer greatly and that can mean a huge setback that I am not willing to sacrifice. So before that can happen I will cut back on the unnecessary things. This may not mean no worries for the rest of my days but it’s as close to it as I can get!



images (1).jpg

So I still dream of Canada. I know it it ‘just’ our neighbor to the north says a lot of people who live up north in the U.S. It’s nothing new to them. However, people who live in the south do not regularly travel there. We are not use to the cold no matter how cold it has been in as of late in the last few winters here. So I have always dreamed of it like a magical kingdom. A place that is so day to our night. With bulking giant goliath wildlife and animals and historic moments frozen in time.

But I have always dreamed of places like Alaska, Russia, Siberia, Sweden, Norway, Iceland, and Canada. My earliest memories of Niagara Falls and Alaska because my mom has a small little velvet scroll of Niagara Falls that hung in my room from when they visited when my brother and sister were young. I would stare at it and wonder if it looked anything like that. I was fascinated with the aspect of all that water, of course. I’m obsessed with water.

However, unless you fly to Canada from NC it’s a long trip to drive. My mom always talks about taking the train to places because its serene and carefree and one can relax without having to deal with traffic and such. However, I am the type of person that once I am in a city I love to be able to navigate it and go when I please, but renting cars are so durn expensive and I do not know anyone in Canada so there will be no staying with anyone or borrowing a car, LOL. The only option is like what we did in Hilton Head if we can find places that are all close by are renting bicycles and doing that but if it’s heavy snow that’s a no go, lol. I will have to do more research because I really want to go but I have to a plan when I travel. I cannot be as spontaneous as I once was due to my MG. I have to make the actually travel portion less stressful on myself so that the adventure part (which may be more stressful but euphoric) can be endured. I will get there even if I only get to step a toe in it, LOL. I may have to do some roundabout way of getting there like a crazy layover on my way overseas, LOL. We will see!


Bucket List Heros

images (1).jpg

So recently others have been seeing my bucket list and apparently they have made comments about it and found it just as interesting. My younger brother made the comment that I was too young to have a bucket list. He was not aware of the more trendy phenomenon of people creating them just to be sure that they live life to the fullest so that they have no regrets. It’t no just for those of us who are sick and have chronic illnesses. I know when I first told him it alarmed him though because I do have a chronic illness and he probably thought the worst. But I explained that people with MG live LONG healthy lives and that I created my list to ensure that I do not allow myself to sit and wallow in my disorder. Bucket list are meant to inspire you to do these things not just before you DIE but just to get out and do something more than get up, go to work, come home, repeat!

SO with that said I have a master bucket list that will not change but will slowly grow over time as I see fit an accomplish things and I have an annual list that I will create around the 3rd quarter of each year and have from that time to the end of the following year to complete. It will give me great joy to complete the list because I enjoy creating to do list and crossing items off of them as I tackle them. I also enjoy planning and organizing events.

Anyways, I have been enjoying finding new ways to tackle the list and when I can get them done. Some of them have been harder than others due to time management. I have found that I am not the only one who wants to see me accomplish these goals and that feels great too. I always tell people I do not want anything for Christmas or my birthday. It’s not because I do not feel worthy or I feel people cannot afford it, it is because I honestly feel blessed enough and would rather give than receive. I also feel that my family has given me so much already that I could want/need for anything. However, my dad saw my bucket list and he decided to scratch one of the items off of it for me and I even more grateful.

My dad bought me my go pro. I can take it with me on my adventures now. I am ecstatic. My mom said he was really looking for it. I’m proud of him because he really went above and beyond. Usually he defects to my moms for what all of us want for different events and this time he knew. Handy detecting dad, lol. I shall call it my PRECIOUS. Can’t wait til our trip overseas!


Annual Bucket List: 2016

Do a local bike race
get yoga mat/basic training
Visit wizarding world of Harry Potter
Read 50 books — at 22 books almost halfway
Buy a Go Pro
Go Sky Diving
Go to a State I have not been to before
Go to 5th Cirque Du Soliel Performance
Paint Pottery
Throw Pottery (as in make my on pottery)
Decorate my house for fall
Decorate my house for Christmas
Take a romantic trip with my husband
Volunteer with a charity monthly
Take a culinary class
Go swimming (you would be amazed that since being diagnosed with MG I have not swam once because I have started to have fear that it would become over exterted and not be able to get out of the water….says the former lifeguard and scuba certified person)
Be sling shot (it a weird bungee course thing that looks like a giant sling shot)
Go to Canada

Master Bucket List

Write a book
Have a baby/ adopt a child
Create a Charity
Run a business
Travel overseas like a nomad (England, France, Italy, etc)
Go to Disneyland
Go to a bioluminscent bay
Have my music music produced and perform it
Help Find a Cure for MG
Go to Alaska- see the Northern Lights
Pose for a sexy calendar


Change Happens Regardless


Yes I do enjoy some things to be routine but I prefer to shake things up often because being stagnant causes me to get comfortable, bored, and complacent. Now don’t get me wrong some things require routines and organization and I do love this as well. I love having a planner and I love organization. But I also love to shake things up and make changes and adapt. I like to be flexible.

When one is too comfortable and complacent we tend to ignore and miss truly amazing things in life. We go the same route to work and miss the new restaurants, stores, and other miscellaneous places that have opened because we just do not go this way. When we eat the same foods we get bored with out selections but have no idea what we want because we have yet to discover it. We have yet to try new things.

It is only when we branch out and try to explore and try new things that we can truly appreciate the changes and wonder all around us. I enjoy it. It is always my goal to try new things. I use to feel like I had to go go go! But now I have learned to relax and enjoy the things around me and take a break. During my breaks I slow down. I may read or sleep. Once I have refueled, I find new and exciting things all around me. I have found so many new things around me lately that it is ridiculous.

My husband laughs at me. I do not have to just go on groupon, living social, or coupon books (go.play.save) to find these things though they definitely help when I seem stumped sometimes. I have learned to make my own fun. I have learned to create trips, enjoy myself, and even throw darts if you will at random locations, activities, and experiences online to try.

Sometimes my husband looks at me like you go right ahead…I will catch you when you get back.


Other times he’s like you go first and uh I guess I will try it…I’m like come on man up you got this, as I secretly laugh maybe even a bit evilly.

images (1).jpg

Sometimes I may even be a bit nervous but I will never tell him which is which, LOL.

download (1).jpg

Then there are the times I have to make him let me try it first because He is trying to run me down to try it first. I’m like hey what happened to ladies first and he’s like that’s antiquated woman, LMBO.


I think soon I will have to make a huge literal dart board or wheel and start picking my activities at random. I like the whole game of chance and mystery behind it all.

Philly Trip

The fast pace life of the north is not hard for me to adapt to; however, doing so with my husband who is not used to the type of ‘wing-man’ I need in this environment is hard, LOL. When we drive I have play navigator no matter who drives. He tries to gives ten steps ahead of time. I only want 2 maybe 3 tops. Moreover, I prefer to have it on my cell, with my headphones playing like ‘atmosphere’ while I pay attention to the flow of traffic and signs.

When my husband has the GPS he starts trying to over talk the GPS and then he will tell me to turn before the GPS says so and causing me to need to look at it more than I prefer. I would rather hear it and only glance occasionally, not stare at it. At that point I might as well be texting and driving, LOL.

ANYWAYS, aside from that, once I was able to relax on the longer stretches of road, I was able to take in the truly old and romantic places of Pennsylvania. The amazing bridges and waterways and cliffs were both beautiful and haunting. They felt like they could make you want to take your mate there for an amazing marriage proposal or be the scene for a morbid horror movie depending on the weather. You may say geesh this is crazy but I actually say it in both ways in one while winding down the snake like road beside the Schuylkill River.


(though the above picture is not my own it looked just like this to me as we were coming around the corner on this winding road) It was so tall! It was almost foggy/ misty at the larger bridge that was so breath taking to me. I have no idea what it was called but it was like something that should have been in a Shakespearian play. But then it was also like something I would have seen in some horror movie as someone walked across it late at night and was thrown over it or plunged to their death in an act of utter despair. Like a haunting melody that was almost a romantic gesture. I know that seems crazy! Moreover, there is such history in the art, libraries, and museums there. Of course I had to see the Rocky statue. They moved it due to some holiday celebration they were setting up but I did get to see it.I have a video which for some reason I cannot get to upload on here but I also have a still to show where they moved it, lol.


While I was there my husband said I also had to enjoy the taste of a real Philly Cheesesteak; This coming from the man that does not eat cheese. He always says that the reason there are no good ones where we live is because of the bread. But I ate more than one and I will tell you I have had a few of these really good ones in North Carolina as well. I am all about the meat and the fixin’s as we say in the south. Moreover, I have had some wonderful bread in the south if you know where to go.

I did finally get to see all the lovely smiles on my husband’s face that I had anticipated though! He got to see family he had not seen for 15 years. He was ecstatic. He was deep down memory lane. They talked for nearly 10 hours straight and texted the whole weekend long, LOL. Needless to say they will probably never lose touch again and we will be making more trips from now on and have a place to stay next time we come up. Though I am still never one to impose! My husband took me to see his old schools and house and the famous roads where things happened in his child hood. He even showed me the road where Teddy Pendergrass became paralyzed. He also showed me the longest ‘naturally occurring’ cobblestone street that still exists here called Germantown. I’m not sure how true all this is, but he was so happy and proud! You let a man have all the dreams and pride they can when they beam like that just like fishing tales, lol.


Then I went to a place called Miller’s. They are scattered about the country but mainly in Florida and a few other places including here. They are amazing. We have a place similar called Carolina Ale House but it pales in comparison. This place has so many more menu options and not just because of their location near the water with seafood but also with their creativity with daily specials, pricing, and the sheer amount of choices. I was pleasantly surprised and now I need one of these in my life.


We also ate a wonderful place called Tonelli’s that had junkyard fries. They were amazing they had 3 cheeses, bacon, onions, and old bay, and ranch dressing. They were amazing. I think the only thing that could have made that better would have been some sour cream, LOL.


Needless to say I was quite impressed by Pennsylvania/ Philadelphia and their British influenced world. The city names, culture, and architecture is so heavily influenced by it there that I felt transformed into a British lifestyle in some areas and having never been there but reading about it heavily it was great. I will be going back!

To Infinity and Beyond…

So I have a million updates to give YAY! So as I promised I would do, I am keeping you all abreast of my bucket list as I get close or complete them. I feel pretty accomplished so far as many time when they say you make these list you should or will only accomplish 3 things right away and may not do more than that or look at it anymore…BUT I AM DETERMINED after failing so many times in the past. I have put more realistic goals and a time on these as well as become more specific with them. Yes I have made more S.M.A.R.T. goals. BUT before I give you all the bucket list updates I also wanted to let you all know I am 9 weeks without plasma exchange treatment…WHOO HOOO. We have 3 more weeks to go to prove I am strong enough to try something NEW. Keep me in your prayers! Now, drum roll please……..The bucket list has started with 3 completed items and one nearly halfway completed! And I still have a whole year left to do the rest But I wanted to give myself some time to start and I couldn’t just make this list and not start, LOL. So since Sept, 18 I have been planning and chipping away at it. I know when some of the other things will happen but I will not check them off until they officially happen! I am uber excited though! More updates to come!

Annual Bucket List: 2016

  • Do a local bike race
  • get yoga mat/basic training
  • Visit wizarding world of Harry Potter
  • Read 50 books– I am on book 17 ( will provide a list in case anyone in interested in perusing what I like to read I have a record on my library website as well as on my bookshelf, lol- quite nerdy I know)
  • Buy a Go Pro
  • Go Sky Diving
  • Go to a State I have not been to before   Just came back from Pennsylvania
  • Go to 5th Cirque Du Soleil Performance
  • Paint Pottery
  • Throw Pottery (as in make my on pottery)
  • Decorate my house for fall
  • Decorate my house for Christmas  happening slowly over a 2 day period as we speak/ type Christmas music blaring
  • Take a romantic trip with my husband  Enjoyed a vacation w/ my husband
  • Volunteer with a charity monthly
  • Take a culinary class
  • Go swimming (you would be amazed that since being diagnosed with MG I have not swam once because I have started to have fear that it would become over exterted and not be able to get out of the water….says the former lifeguard and scuba certified person)
  • Be sling shot (it a weird bungee course thing that looks like a giant sling shot)
  • Go to Canada


Varied Sameness…Excitement Erupts!

images (1).jpg

I love mind games even more so when people try to play them on me. It keep my skills sharp. I tend to enjoy it when people attempt them on me in effort to believe that perhaps I too gullible/ naive know that they are trying to fool me. Sometimes I give them so much hope before snatching it all away. There are even times I let them believe they have won only to later in life realize that I always knew they were trying to get over on me but it only makes them realize how ashamed thy should be or how naive they really were.

It’s like when you were little and your parents let you believe that you were smarter than them and you thought you were really getting away with things. However, in actuality they knew exactly what you were doing, they were merely picking their battles or letting your think you were a genius to stroke your ego when you needed that extra bit of confidence. Parents are smart like that, LOL.

Recently, I enjoyed a bit of ‘varied sameness’ as I deal with many routine processes though they change slightly. I don’t mean the random driving adventures of people stopped in the straight lane to run left (thinking they were at the red light lane to go left at 5am), or the the person who goes from the left lane to turn so wide that they just ended up in my right lane and then goes 2 lanes to the left to get back on the highway again at 5am. Nope. I mean the person who stares at me blankly like I cannot see them, as if they have on the darkest shades, but only have on glasses, LOL. So I smile and even give a wave. My parents taught me to never be rude.

When people stare like this, my husband would totally lose it. He cannot stand such things. I have learned to ignore it or relish in the thought that people are curious, nosy, ignorant, or plain rude, LOL. So I just give them a nod to speak if you are going to stare so long. I figure let’s match wits. Let me practice my storytelling abilities on you. Is it possible that I can intrigue a total stranger and make them believe something about me that makes me memorable. Not necessarily untrue just memorable. Moreover, can I play a mind game with them. Make their lives more interesting because I was in it, LOL. I mean that should be a given but can I do something that will make them go home and talk.

So my goal this particular day was to interact with a total stranger and see if I could work in certain words and make people tell me what fascinated them most about where they most wanted to go in the world. It was a fun game to play that day. You would think most strangers would never tell you something like this but you need only find the right environment like a long wait/ line and find a place that has a television commercial that can run as an a ice breaker. I did just that while waiting on my car, LOL. It was pretty fun. Though some people may not have rushed home and planned their next vacation, they probably had a better than normal waiting experience (passing the time faster than normal) and everyone was participating almost interrupting the other to interject their ideas out of excitement.

I know I should not always find life as an experiment as people are well humans and not play things, but I saw this as a social experiment of sorts and a way to pass the time for me as well. Moreover, I also find that people truly enjoy things like this as do I. I do not go and write these findings in a journal or formally conduct these experiments, they are purely for my observation to try engage people in more friendly interactions in the world. I do not conduct ill-intended interactions and if one seems to go this way I terminate it immediately. However, this was pure delight and I am sure many went home and enjoyed a leisure conversation that was sparked about a place that they may not have talked about in a while with friends and/ or family to distant places that they have dreamed of going to and the significance it holds and 1 good deed they could do while there, 1 life changing adventure while there, and 1 person they wish they could meet there!

images (2).jpg

The Hunt Is On…Sugar High Freedom!

images.jpg…But WHY

We have all done it! Looked in the pantry, every cabinet, and opened the fridge 3 times as if magically something will appear in it and then really pondered what it is we are want! Knowing that no matter how full (or empty) the pantry, cabinets, and fridge are, that what we want is not in them.

I am in this boat right now. I need something sweet. In the last few years I have toned down on sweets so much that we don’t keep any in the house. My sweets are usually things like bananas I may have a cup of lactaid milk. I know boring. I do not really crave sweets like that. If i do like I said these things actually take the edge off.

However, lately they are not working. I need a serious fix. Some people say I need something so good it makes you want to slap yo mama. Well I say I need more I need something so good that I temporarily loose my grip on reality and almost forget eating that item much like Patrick star.


Though I will not be this bad I will make no promises if I find such a food!


I want to be transported to a world of bliss filled that is transcendant and trippy.


I have yet to figure out what this amazing sugar filled treat is yet and I hope to find it on my trip this week! I am going to eat my way through the travel channel’s Man v. Food, Bizzare Foods, Diners Drive-ins and Dives, Sugar High, and so. I hope that I find that melt down mellow out lose myself treat that just allows me to throw all my cares in the wind if only but for a second. Can’t wait ti take a picture and blog about that one! Ready to give my food porn it’s spotlight!

Waiting for His Eyes to Light Up!


I love to to plan trips and do things with my husband! It’s not an easy thing to do because he is not big on planning or doing much of anything because he just thinks about going to a place and that’s IT. He thinks about these grand places to go in or out of the country and then never thinks of when he wants to go, how we are going to get there, how much it will cost, where we will stay, or what we will do once we are there. He does not plan one detail at all. He just knows he wants to go or there may be one thing in particular he wants to do there such as the casino and then he has no other idea of anything else, LOL. Planning usually helps reduce anxiety for me…but when it comes to planning with or for him…sometimes I wonder if it does, LOL. I sometimes get a knot in my tummy because he I know his reaction because he is so against things. But I am hoping this is different because this is one he really wants to go on! We both need this vacation! We haven’t had a vacation since our honeymoon and it was okay, but I was near critical with MG and was hospitalized a day after returning if that was any indication of what sort of condition I was in. so back to planning!

So then that’s where I come in raining on his little parade, LOL. I hate to say it this way but he sees it this way until we get there and he is having fun. He hates all the hard work I put into it until then. I badger him to find out when it the best time to take off or I tell him when I have off and that he needs to take off then and give him about 2-4 months advance notice. Then I begin looking at hotels in areas near the area (if he happens to know the area better I ask for input). I am the deal finder so I work my magic to get us all the best deals. Then I find groupons and trip advisor activities and start annoying the snot out of him asking him about the local things there to find out what he might like to do. I know he hates it when I do this but I try to give us a few things to do we have never done before on every trip we have ever been on so we have some really cherished memories. I always try to NEVER pack our itinerary so that we really have down time to nap, relax and surf the net, go for a walk or find something new if we are driving and just go there if we want instead of something else we may have planned or after something we have planned.

Then comes packing for the trip. He always wants to KILL me! I have it down to a science. I have excel spreadsheets  created based on seasons of the year (fall/ winter and spring/summer) and then I simply can change the amount of stuff I need to add based on the length of the trip. I know it’s sad but I usually don’t have to buy things once we are at our destination. Plus I pack some extra things for the beanhead I’m married to who happens to leave things or things he won’t need something because he refuses to pack until just before we leave. MEN! I’m so excited I pack days beforehand. In a total emergency I may pack the day before and that means I’m stressed to the max, LMBO.

Then we hit the road with 3 gps’s (the regular one and both phones) and a printed turn by turn directions. Believe after one horrid trip of failed proportions driving one year going whitewater rafting due to miles of construction on a highway I will never again go without this many back-ups again, LOL.

Once we get there to our destination, I will all be worth it! My husband gets this glow about him that is so hard to explain. He just lights up like a child on Christmas. I believe for our trip in 2 weeks it will be seeing his family and showing me all the places he use to frequent when he was a child. Telling me a million stories! But I also believe it will be sharing new experiences with him. Taking him to places that he did not know existed in a place he lived for so long. He moved before he was an adult, so I’m sure there are places he did not get to see and you age and your interests change and grow now he gets to experience things that fit those desires. I can hardly wait to experience moments through those eyes!

I enjoy having firsts with my husband! I enjoy being the one who he says opens his horizons and takes him to places and experiences that he has never had! It makes me proud!

Across the Pond I Go!

download (1) images (5)

In the summer of 2016 I am planning a trip to London and France. I am going with my parents, my sister, and my aunt. Right now we have not set a definitive date, but I am hoping for May as it will be cooler but not super cold and not super hot according to normal trends. People with MG do not do well in extreme conditions.

Right now I am looking into all the blogs and tips I can get about both locations. I am not new to traveling but I am new to traveling overseas. I have been out of the country but only on cruises so it will be new to fly out and stay in another country for a week.

I will actually have to master jet lag for once, really pay attention to laws and rules, and though I know French people know English I want to really be away from the Touristy areas so I need to brush up on my French. I am nowhere near as great as I use to be as I cannot ‘hear’ it as fast as I can write it and speak it but I will try to get back to it. You never know when you will need to ask a local something because they pretend NOT to know English yet you know from your high school French classes it is a requirement of learn the language of the neighboring countries (in school) around them and they bordered by 6 countries, LOL.

I also want to take a flight that will take a stop in another country for about 8 hours or so, this way I can see another country for a few hours and eat foreign food, see some sights, and take some pictures. Of course I would plan this beforehand so that it would only be 4-5 hours of playtime, giving me plenty of time to get in and out of the airport so that I do not miss my connecting flight.

I am already creating a list of all the sights I want to see! Some of them are cheesy and touristy and some of them are off the beaten path such as the restaurants. That’s the only way to get the most authentic foods and shops! I am super excited. I’m crossing off so many things off my bucket list this year coming up! I’m going to make it happen! I have to start lining up some guides…any takers? LOL!