MG ice analogy

Today, when I was getting water from the dispenser on the fridge, it made me think about something: Myasthenia Gravis. At first, that might seem quite odd, but what I thought was the ice maker in this fridge is the perfect analogy to describe what it’s like to have MG.

If you have an ice maker in your fridge/freezer, you know that as long as it is working right, you will have plenty of ice to use how you please. On a hot summer day, you keep refilling that glass of ice water. No big deal.

But what if the ice maker breaks? What if something is preventing that ice from being dispensed to you? What if you can’t choose how much ice you get? What if you never know how much you will have or how long it will last you? All you know is that the ice maker is broken and thus you have to conserve the ice you have to last you through that hot summer day. When you are in the heat, that ice melts faster. You have to pick and choose how to use it because when it’s gone, you may not get anymore until tomorrow, or maybe even the day after that.

That broken ice maker is like the auto-immune attack on our neuro muscular junction. The ice is like the acetylcholine going from our nerve to our muscle to make the muscle work. Some days we will have enough ice, other days we won’t. We don’t know exactly how much ice we will get, so we have to conserve what we have. We have to pick and choose what to use our ice for and designate only a certain amount to each glass. We have to be careful not to let it run out.

What does that mean in the literal sense? We have to plan our days and choose which if any activities we will participate in. Each activity including cooking, driving or merely talking on the phone all take a certain amount of ice. We have to decide what is most important and only do those things, even if we are still functioning ok or “look fine.” We must rest both before and after any activity to prevent a trip to the hospital. We must avoid the heat.

Now every time I refill my water bottle and dispense that ice, I will probably think of MG, and I hope you do too. I hope it serves a reminder of the need to conserve our use of muscle for the most important things in life. When our ice runs out is when we can have a crisis with the need for a ventilator, plasmapheresis or worse.  This is why those of us who have MG so strongly desire awareness and ultimately the hope for a cure, someone to fix our broken ice maker even though it looks “just fine.”

I got lyme AGAIN

Two weeks ago, I joined two others on a short walk, a very short walk. But pretty much as soon as I exited the car I was attacked by bugs- mosquitos and who knows what else. If only people could love me as much as bugs do. Getting back into the car upon ending our walk, I was still covered in bugs. I searched myself and killed or kicked off as many as I saw, but the damage was already done apparently.

Two days later I noticed a red rash appearing. I knew it looked all too similar. The classic bullseye rash. Lyme disease. Only this time I'm almost certain I got it from a mosquito. Yes, that is possible.

Since then my body has been in a lot of pain. My joints feel so stiff and inflamed. I've been weaker, especially my arms, which over night feel paralyzed. My mood is off. I'm so tired all the time. Not like I wasn't already dealing with all this, but now it's just hitting me harder once again.

I got lyme back in college which laid dormant in my system until I first got sick in 2010. It got diagnosed when I got lyme again last September, almost a year ago. I was hoping to soon switch from antibiotic treatment to herbals. But alas, I now get lyme for a third time, and pretty much have to start all over.

This makes me angry. It really does. I hate this battle I have to fight. But what is even harder is getting other people- family, friends, acquaintances and even doctors to believe and understand the seriousness of this battle I fight. Half the battle is having people on your side, but lyme disease often makes you feel quite alone. Because those in charge hide the epidemic of it. They say its arthritis or MS or chronic fatigue syndrome, or anything and everything other than lyme because of the political controversy behind it. It's not like cancer where everyone's got your back and the world turns pink for a month. No I wouldn't want to have cancer, but you know what, lyme is no better. Not one bit, told from people who have had both. The lyme disease battle isn't a few months or years fight. It's forever. I fight forever, and mostly an invisible fight to the outside world.

So when I say I can't do something, such as join you at a gathering that is in a wooded area, accept my words that I can't as your answer. I have a reason behind what I do and what I don't do. You may think I'm not living and restricting myself, but I do what I have to do to enjoy the highest quality of life that I can. I have to pick and choose. I have to control my environment as much as possible. I have to often say no in order to say yes to something else. You may not agree, but you aren't me. You aren't fighting this battle, and thank God for that.

I connect to God through nature yet every time I attempt to be in nature something bad seems to happen to me. No doubt the devil has his hands in this. So please join me in praying and rebuking the devil in the name of Jesus, that God's protection surrounds me, that God's healing fills me, and that God's peace lifts me. Thank you.

Differences in the lives of those with MG

Lately I've seen a lot of facebook posts from fellow MG'ers (others who have Myasthenia Gravis)... in and out of the hospital, blood infections, more treatments than expected, can barely breathe, etc.

But not too long ago these same people were seemingly doing so well. They were out and about, hosting parties, driving, on vacation, etc.

Then you look at me. I'm somewhere in between those two extremes. Constantly.

Why is this?


Well, for starters, we are all different. I have MG, POTS, Lyme, Bartonella, Adrenal Fatigue, a blood clot disorder, an immune deficiency, a back problem, who knows what else I'm forgetting. Others have a variety of other things. In addition to this, many of these things, especially MG, cause fluctuating symptoms especially fatigue and weakness. But there is something else I want to discuss today, the bigger reason this difference exists as I see it.

Those people I know first mentioned here are choosing to go through treatment. They are choosing to take potentially toxic medications, potentially harmful treatments, or fight hard for a set period of time... all for the hopes of short term remission or improvement. Sometimes it works, sometimes it doesn't. But the treatment period is very rough and the remission or improvement period is very rewarding.

As for me, I have chosen not to do that. There are several reasons. IVIG (one type of treatment for MG) is a huge risk due to my blood clot disorder. I cannot take immune suppressants due to my immune deficiency and lyme disease. I cannot take prednisone due to lyme disease. Plasmapheresis (another hardcore treatment) can only be used on me in emergency situations. Specifically for MG this really leaves me with nothing in regards to traditional treatment.

So what do I choose to do? I choose to eat organic, non-gmo, eliminating gluten, sugar, dairy, soy as much as possible. I choose to stay out of the sun/heat. I choose to control my environment in order to control stressors (stress sends MG'ers downhill fast). I choose to take a billion supplements and vitamins trying to treat things the natural way.

As a result, I don't have those highs and lows. I don't have monthly or sometimes weekly trips to the hospital. But I also don't have weeks or months of remission or improvement. For the most part I remain stable but at a very low level/quality of life. What I can and cannot do still fluctuates day to day or even hour to hour but it is within a range. I know my limits and there are a lot of them. And I choose to follow them.


Neither of these is right or wrong. It's all about personal choice. It's all about quality of life. Do you feel you will have a greater quality of life by choosing to aggressively treat and be in decline for a while and then have a set time of really good days? Or do you feel you will have a greater quality of life by choosing to just do what you can and remain stable enough to get by without these constant highs and lows? Sometimes it's not a choice because lack of options choose for you. And sometimes even if you do choose and go in with a plan, it doesn't work.

All we can do is educate ourselves of all the options and then make the best decision based on all we are presented with. Then we just have to take life as it comes and make the best of it. Sometimes that's in a hospital, sometimes it's at a party, and sometimes it's somewhere in between. Such is life with MG.