A cold or a life threatened?

It's flu season. To many that means maybe a flu shot, maybe not. It means more kleenex, perhaps a couple days off work, not feeling good.

To those with MG, or POTS or many other chronic illnesses, especially immune system related it means worse. Much worse. It can mean the difference between life or death.

My guess is at least half of the people reading this just read that and thought "yeah right" or "she's exaggerating." Am I? No, not one bit. You don't have to believe me but I ask that you at least listen before you make up your mind on that. Please take a moment and read this full post. What I'm about to talk about will be specific to MG for the most part.

Some MGers and I were discussing what getting sick means to us, the already chronically sick... and it was suggested I write a post about it. I may have talked about this before, but it's a VERY important topic and especially important at this time of year.

First, our systems are already sick. Remember that. So if we "catch a cold" we are adding sick on top of sick. Second, many are on immune suppressant drugs. You may not know what that means since I didn't before MG, so I'll explain...

It's exactly how it sounds. Immune suppressant drugs are very powerful, usually pretty dangerous/can be very harmful (as in more at risk of cancer) drugs that suppress your immune system. Your immune system is what keeps you healthy, fighting off the bad stuff such as a cold or the flu. When you are on these drugs, you don't have that working for you. These drugs stop your immune system from working. You really don't have a defense then against a cold or the flu or anything including things much more serious. So every little germ is a risk... a HUGE risk.

Why would we take immune suppressant drugs then? Well if you had the choice of taking this risk with the chance of it helping you, or not taking it and struggling to breathe and move to the point of sometimes being bedridden or on a ventilator, what would you choose? We choose this choice because we don't really have a choice. Those who take these drugs have usually already tried just about everything else... less harmful medications and usually many different ones, IVIG, maybe plasmapheresis, and yes trying things "the natural way" too... and having none of it work or work well enough to allow us to function.

How then is an immune suppressant drug good for us? It's good because anyone with an auto-immune disease, like MG, has an immune system that isn't working right. In normal people the immune system fights off the bad stuff like I mentioned. With us, our bodies are fighting our own bodies! Constantly! Our bodies decided to see something inside us as a "bad thing" and fight it. There is a battle going on inside our bodies every second of every day that you can't see... but we can feel. So the immune suppressants say STOP! Stop fighting yourself!! And thus we can regain SOME normalcy in life... if the drugs work for us, if we don't get the serious side effects, and IF we don't get sick.

Yes there are many who are not on immune suppressants. I am one of them. This doesn't always mean it's because we are well enough to not go this route. In fact for myself, it's completely opposite. My doctors are scared to put me on an immune suppressant because of the risk and how sensitive my body is. But guess what else there is? Deficiencies. I just recently found out I have this. For me personally, I have a deficiency in the "stuff" that protects you against pneumonia, strep, sinus infections and ear infections. Well, hey, that explains a whole heck of a lot in regards to my getting pneumonia twice in my 20s! And then the constant circle of infections or misdiagnoses treated with antibiotics that landed me in the hospital numerous times... so on and so forth. So anyways, yes, some of us can have deficiencies of this nature. What does that mean? In simple terms, our bodies are doing the same thing they would do being on an immune suppressant. So go ahead and place us in that grouping as well.

And now you have left those who aren't on immune suppressants and don't have a deficiency. But you know what we do have? Bodies that are already physically weak due to our disease. Bodies that sometimes don't know which end is up with all the trial and error of medications and treatment. Bodies that have been through more in a few months than some people ever go through in a lifetime.

Add a "simple little cold" to any of that, and can you see how this can lead to the difference between life or death for us? No? Not yet? Well that simple little cold with a runny nose turns into a chest cold which quickly causes breathing trouble, head to the hospital, MG is affected as breathing is already compromised with MG, now we need plasmapheresis but oh no you're not supposed to get that if you are already sick, debate what to do but now it's too late, emergency need for a ventilator. You can take it from there. There are actual, real stories from real people with MG that have almost lost their life after exposure to one of these "little colds."

PLEASE help us prevent this from happening. PLEASE. Us with MG beg you to listen to us. We know you get tired of hearing it. We know it can be annoying. We know you sometimes question how sick we really are when we look healthy. We know you are confused when we are out and about one day and can't even answer a phone the next. We know you can never really understand unless you are in our shoes, and God forbid we don't ever want anyone else to have to go through this. But we need you to know that this is real, this is serious, and YOU can help us.

If you are sick, in any way, shape or form, as simple as a cough, the sniffles, a sore throat... anything... please stay away. We would love to see you but unless you provide a hazmat suit, it just can't happen until you are fully healthy. Understand we are always going to request this, and we have to. Understand that we are always going to ask and then ask again if anyone is sick before we come over or invite you and your family over. Understand that kids usually carry more germs and that's not to be mean, but us and kids have to be very careful together. Understand that if there is a party, yes we would LOVE if we could go but even if we by chance have the energy to go we still probably cannot because of the risk of germs. Understand that we have to give up so much and be so careful everywhere we go and this is not at all personal against you in any way.

And so again I bring up, many of us love to enjoy what we can do and appreciate when you are able to accommodate our needs... such as chatting online in order to maintain friendships in a way that won't get us sick, picking up items we may need from the store but can't risk it in flu season, hiding out if you yourself are sick especially if you live in the same house. And another thing many don't think of but can easily do... be proactive. If you don't have a chronic illness but know someone who does, especially if you live with them or see them often- take vitamin C, vitamin D, probiotics. Other things that sometimes have helped people- green tea, echinacea, Airborne, garlic, lemon. Notice these things are basically all natural, healthy things to do anyways. (Disclosure- do not take any of this as medical advise and always first talk to your doctor.)  But really, just realize that our bodies don't work the way we wish they would and what is no big deal to you is a HUGE deal to us.

Thanks for reading and thanks for helping us not get sick on top of sick.