myasthenia gravis

Stupefy

Posted on by Lady CAS

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‘What’s the name of the spell that paralyzing people in Harry Potter?’, asked Philly. We were laying in and he randomly asked me this.

I sat for a moment, caught off guard, said huh and then responded stupefy! I have no idea why I said huh first it seems to be a reaction at times because it hits my ears or maybe even my brain late.

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I don’t know if his mind was still reeling from earlier that night or what but he seemed to be pulling one of my numbers and making the punchlines for me. Earlier that night I had the most intense cramps in my calves I had ever experienced in my life. They were so bad that I could not walk, could see the muscle spasming, and literally took my breath away each time it jumped. I thought we might have to go to the hospital because unlike the first time I experienced blood clots in my legs this time I was nearly certain that I might have some.

I have NEVER felt this sort of pain in my legs before. I screamed in pain and the pain lasted for well over 30 minutes. I could not ever touch the area to begin with. Philly was beside himself. However, he would not show this of course. He tried to massage the area which hurt, then he tried to massage my feet which helped at first. Then that didn’t work. Then he tried to get me to sip water. We realized immediately I was severely dehydrated. Moreover, he he was trying his best to calm my breathing which has suffered greatly from the stress of it all going on about an hour at this point.

He sounded like my Lamaze partner,

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coaching me through deep breathing exercises and giving me encouraging words and rubs on my back while holding me. Ok maybe he wasn’t that intense but he was quite soothing after I was able to relax

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It was like a combination of the 2 in my mind

But eventually he also remembered I probably needed some magnesium after a bit of research and got me some dark chocolate. I was a bit reluctant at first since I thought part of the reason I was in that mess was because of the dehydration from salt and sugar and sweating all day with little water. We had a state fair extravaganza and my poor body had been through the wringer.

I even spent the rest of the weekend so afraid of those cramps again I barely did much else. I will say this, I will be stocking up on gatorade and pedialyte pops ASAP to replenish what was lost since I let myself get so run down. This is not like me.

I have to be careful I am too close to my surgery to sabotage it and I do not want to jeopardize me in general nor scare Philly like that again. My MG scares or health scares seem to come out of no where. We are having a good time watching t.v. or eating and then boom. Poor thing.

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It was Fair

Posted on by Lady CAS

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Bells, whistles, ferris wheels, cotton candy, funnel cakes, and tons of walking. Yes its that time of year. When the weather turns a bit chilly and the state fair comes to town. I went today with Philly and had a ball. It was his first time going to the fair in North Carolina. He actually enjoyed it.

We went before it got to packed. Less people children and annoying sounds, I guess missing the point of the fair. Philly was like, wait so people pay $10 to come in and people watch and walk around and then pay more money to do everything in here? His face like we were all stupid

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And I was like no, there are free concerts, shows, galleries, meet and greets with local celebrities and regular celebrities (sometimes), and demonstrations. But yes, there are MANY things here that you have to pay for. His face then

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I only do amusement park rides because I dont trust rides that are thrown up in a few days and taken down just as quickly.

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So I’m one of those people that just goes for the food.

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But before you judge me

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Know that i only really eat like this once a year. I know you make be thinking yea right but hear me out. Fair foods only come once a year and the funny part is that i do not even get all things that are traditional fair foods. But i have to have these items each year at the fair and i have specific vendors I will only go to and get them.

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I must have an Italian sausage with peppers, a gourmet funnel cake (each year i get a different one but always at the same vendor- this year it was a turtle brownie funnel cake), and vanilla ice cream with rainbow flavor burst (gel piping around the curves). As usual the cone was bigger than my head!

Philly enjoyed the sounds and smells too. We even went to enjoy one of my favorite games beat the guesser. Where the person guesses your age, weight, or birth month. They have to be within 2 years of your age, 2 months for your birth month, and 3 lbs for your weight. I always do my weight because they are never anywhere  near it. The man looked did a complete assessment was spot on with everyone else that came near him and when I walked up was under by over 30lbs. It always happens. It makes me feel better for sure.

Philly was tempted to try his age but didn’t I think he should have. No one ever gets it right! I won a purple rabbit, only because there were no blue ones (I love blue and I love rabbits).

I saw this look on Philly’s face.

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He said so what (as a chef) people can charge whatever they want at these booths and no one questions that 2 booths down it’s the same thing? How do I get into this?

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Next year Philly has learned that the earlier the better. And he just may have a booth next year so be on the look out for him!

It was an awesome day.

 

Blogger Habits

Posted on by Lady CAS

You are sitting in bed thinking about how you grew up and nicknames and how you got them and how crazy these names sound and how you have basically named everyone around you. How these are badges of honor.

Or the rant about people at work cannot just say certain things and to you they way they do or do certain things with certain expectations and you had some whimsical witty punchline.

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Then there is the ever comical/ or serious moment that happens to you that you have been meaning to tell your blogger community and has just been slipping your mind or you have not had time for and you have wrote or re-wrote the story a million times in your head and yet to actually put it to paper (typed it).

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I know I am not the only one who has this habit. I do this at least once a day when I do not actually blog. I actually talk out loud or nearly talk out loud the blog that I would have written that day. I think sometimes, what a missed opportunity to share with you all. Sometimes I get mad that I cannot remember that awesome punchline that seemed so great and I had perfectly in mind just moments before and could not get to my computer or paper in time. It just leaves me. I give it to you universe.

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It’s like the novelist or poet. I just get so annoyed.

I know this can get better when I am not as stressed and when I just allow this to happen but I also know that with more regular practice like when I first  started blogging this is less of a frequent occurrence. I must get my mojo back.

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ASK ME ANYTHING ABOUT MG

Posted on by Lady CAS

So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.

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Easter in November

Posted on by Lady CAS

I finally did it. I finally have a date for my thymectomy set in NOV.  In 2.5 months I will be doing something that nearly terrified me to hear when I was first diagnosed back in October 2013. I thought since I did not have a thymoma there was no need and that they should try all non-invasive methods first. I mean I had just been diagnosed for Pete’s sake. I had barely even been on any medication and had hardly felt informed enough to make an informed decision at that time.

Fast forward 2.5 years.

I barely heard more talk about a thymectomy until I brought up the subject of children. Then It was on the table again. I then had to wait what seemed like an immensely long time on a waiting list to see a specialist  neurologist in Myasthenia Gravis just to talk about how I could safely bare children with this disorder.

That wait took 8 months. August 2016.That’s when the thymectomy came back on the table.

I was all for it this time because I had been through nearly every treatment they had for MG now. They had told me what would and would not work for me over the last 3 years and what I was a candidate for and so forth. The doctors all knew me and has seen me countless times and knew, just as I did what my body could handle. My meds had been adjusted numerous times and after being on a cocktail that seem to keep me stable along with maintenance plasma exchange I still am only getting by.

The doctors believe that this surgery could definitely improve my quality of life and they have successfully performed it many times using the Davinci robot. I am both excited and nervous.

Having gone through a divorce recently I had already decided before that divorce that I still wanted children even if it was not with that man. I wanted them in the future even if I had to be artificially inseminated, ask a friend, find a new relationship, or even adopt. But my goal and hope was to try and have one of my own.

Going into this surgery, I am doing it completely for my own quality of life! However, we all need some additional positive things to hold on to going into life changing moments…Sometimes it’s the idea that a loved one/ family is waiting for you when you come out of the surgery, an event (like a wedding is coming up), or that you need them. Whatever the reason you hold on to those moments because it makes you feel safe, calmer, distracted, and gives you a reason to fight is somethings dare I say goes wrong.

I call those moments Easter eggs because they are the happy moments you plan or want to get back to in life. It’s like knowing on Thursday knowing you are going to your favorite restaurant with your best friend whom you haven’t seen in months due to your schedule for lunch. On Monday no matter how crappy the week you look forward to your little hidden gem because it may be buried under leads of stress, negativity, traffic, paperwork, bosses yelling, babies crying, missed flights, and marital spats, but that is a breath of fresh air in the midst of your week.

I am looking for a few Easter eggs right now for my surgery. I feel like I need more than one.

I BLEED PURPLE & GOLD

Posted on by Lady CAS

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The game this upcoming weekend is sold out! Normally I would have been like OMG what but then again you guys know the planner I am…this would have never happened to me because I would have had my tickets the moment they went on sale, LOL. No I knew I would not be able to go months ago due to this being the weekend before my trip and having to house sit, dog sit, and work on Saturday, LOL. So yea wasn’t gonna happen. But I will be blasting the game and cheering right along side my team!

We are the UNDAUNTED!

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Get ‘EM Boys!

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Someone Cried Foul

Posted on by Lady CAS

It seemed like everything I did or said went sour yesterday and it spilled right into today no matter how much I tried to prepare for today ahead of time. I tried to have things ready in advance for today since I get up before dawn on Wednesdays and this week I am house sitting further from my job.

I was not amused by the little invisible mischievous creatures wreaking havoc on my life yesterday and this morning. Making everything go haywire. It was like there were gremlins mucking up the hardware of my tech systems or something. Yesterday started with my parents trying to leave for their trip and I was uber sleepy because I went to bed late and then woke up early with them (I sleep really light). As I was getting dressed I kept staggering and swaying…Lack of nutrition (no appetite for 3 days, sick to my stomach).

Then I got up and went to work in traffic that I usually do not drive in and thought I was going to die. Not because it was traffic but because I had not been in that sort of traffic in so long that I almost forgot how to drive in it and felt like I was going to DIE. People kept trying to merge on me and then I almost cowered and lost it. Mentally I was not prepared for it.

I got to work and wanted to kiss the ground. I started working immediately head down. My boss sensed something was off but said nothing. I knew he sensed it because he kept asking if I was good. He kept assigning me stuff and I would knock it out in less than an hour and ask if he needed anything else, I was a machine! I just wanted to keep my mind off my durn stomach screaming at me and the black spots before my eyes.

I shot of a silly text, it was met with a mixed (seemingly frustrated reply). Hmmm. I texted BFF about how I physically felt (black spots, stomach, maybe I should go to the doc…) She nearly yelled at me. I was more talking out loud with no intention of going because I felt like if got more sleep my body would have handled this better (forget food, I was hydrated) I know, stupid! But I have been too stressed to eat and 1000 calories in 3 days was still sustaining somehow.

I went to the locker room and blacked out and scared the crap out of myself. I knew it was bad. So I came out, and told the staff what they need to know…I would go eat a banana, LOL. Not that I blacked out. I went and got a yogurt instead with fresh berries and granola 6oz. It was all I could stomach. This was 1:30p. It helped. Then at 8:30p I ate a chicken 60z of chicken salad wrapped in lettuce.

My doctor will not be happy that I lost 9lbs in a week today. Not this way. It was not intentional. They do not want me to swing drastically before surgeries. UGH. Due to not eating I’ve been extra moody and sensitive…We’ll call it HANGRY! Then when you are already dealing with other stressors in your life that I would rather not talk about but are pretty harassing yesterday I had no shining light and was fairly ignored. So I read my books, played with my dogs, and as usual entertained myself. Sadly it was the first time in a long time I can say I have had a really bad day!

Then this morning it was bad from the moment I woke up and look at my phone and realized I could hardly see it. My durn eyes were swollen from allergies, I forgot to take my allergy drops before bed last night. I could go on and on about all the small bad things that happened that I noticed but the good things are there and will continue

THE DIFFERENCE BETWEEN YESTERDAY AND TODAY

I WILL HAVE A GOOD DAY…Because I never ALLOW 2 days in a row of BAD!

Twinkle in Your Eyes

Posted on by Lady CAS

There was always something in there

Though others may not see it

Shining like diamonds

Sparkling brighter when you are up to something

That smile so contagious

That laugh seems to be the most…

entertaining and

limitless weapon in your arsenal aside from the

magnitude of love you possess;

owning all that you are in stride

 

 

 

Dream me a little dream

Posted on by Lady CAS

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Everyone has dreams that they wish they could just live inside of, even those dreams that they feel guilty they had but still did not want to end. I can honestly say the only time I feel guilty about my dreams now are because I of what was suppose to be and did not come to pass and where I want to be.

However, I am honestly (as I said just a few days ago) getting back to happy. I just cannot keep allowing others to make me feel so trapped and closed in, stifled and suffering while they somehow get pleasure and I don’t.

My dreams have always been both an escape and a warning/lesson. they tend to passively remind and teach me the things that I do not want to see or learn when I am awake. Moreover, my dreams are an escape into the great possibilities that can be when I just let myself drift and stop fighting.

Even if sometimes they do get a little weird…that just makes it more interesting because usually it doesn’t even seem weird until I really think about it a few days later. Usually weird seems perfectly normal to me. I enjoy a weird life! #teamweird

Charging the Creative Mind Back Up

Posted on by Lady CAS

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What do you see in the picture above? Is it an alien life form? A strange light or substance out in space? Some new life form found in the vast depths of our oceans? Or a child’s drawing perhaps?

You would be wrong on all counts!

It’s the neural synapses within the brain magnified greatly to show the activity within the brain. So let’s literally charge the brain!

So I consider myself very creative and imaginative. I have always found myself to be a big dreamer and over the years I have let that become a bit muted. I think sometimes that adulthood and corporate life can do that to you. The dull humdrums can do that to anyone, but it is our duty as dreamers and creative believers to find ways to break from that reality and shake things up. To keep ourselves from feeling chained down and ready to burst.

I get overly anxious and feel as if I am stuck too often and think why is this happening and I know it is not because I have a disorder that is ‘holding me back’ but because I have allowed excuses to form on why I cannot enjoy new and alternate forms of things in my spare time that my disorder has nothing to do with. I let people and thoughts hold me back.

This is not who I am, but what I have become because I started ‘caring’ what others thought of me. Thinking, ‘what will he/she think if I go and do this?” or “wear that?” or “if I just what if I went to this event?” But I just do not care anymore! I am who I am and here to enhance my learning, love, excitement about life and love for myself, family, and live. Just because people do not think it is “Christian enough” for them tough cookies because I that is between me and God and honestly people twist the Bible so much that most of the things they say I shouldn’t do over the years I learned was a crock! I was just missing out for no reason at all.

I must do what makes me happy, I have a pretty good moral compass and if I feel bad, guilty about it chances are that it is wrong and I should stop it or will repent for it. I know when too much is too much. Until then I have got to begin anew. For me the ‘new’ started with all my great news Monday at my doctor’s visit and will continue with my Trip to Europe in 2 weeks. As well as the much needed days off I hope to have sprinkled in here and there since I have vacation accrued that I must take before the end of the year since we are moving to a new PTO structure next year within my organization. Again, change is good, I refuse to think of it any other way. As I eat with my 4 prong for that just became a 3 prong one, LOL. At least I didn’t suck it down my throat!