Truth

Happy June! June is Myasthenia Gravis awareness month. I would love if you could all pass this website on to friends and family to promote awareness. If they have no idea what MG is all the better that you pass it on! Hey, one day not too long ago I had no idea what MG was. I went over 2 years un/mis-diagnosed. Think about how we can shorten the time frame of un/mis-diagnosis if more people are aware this exists and what the symptoms are.

I am involved in several Myasthenia groups... a community of MG patients I can relate to and discuss concerns together. It's hard when so many of my own family members and friends just don't "get it." I appreciate everyone who reads up on it to try to understand. That REALLY does help. But, there's still something to be said for a group of people in the same situation. So anyways, within these groups lately there has been much more discussion about how much incorrect information is out there about MG- on websites and even from healthcare professionals! We are all concerned and upset about this because it gives all of you- our family and friends- the wrong idea about MG, and that makes it all the much harder for us. So for the month of June, a lot of us are trying to promote awareness ourselves as we believe this disease can best be learned by the patient him/herself.

One thing you will often hear or read is how MG patients can live a "fairly normal life" or worse yet, a "normal life." Really? Can we? No. Yes there will be the exception to the rule of those few MG patients who still work full time or can exercise. But even they do still have their moments/days that are no where near "normal." Those patients aside, most of us agree that we are very far from living a normal life. Our life is completely altered from what it used to be. Most of us cannot work, and those who do are usually part time.  This is because MG can hit at any moment and the majority of those moments are not well enough to hold a steady full time job. A lot of us went from being very active to not at all. I LOVED sports- basketball, softball, dance so on and so forth... now just to throw one ball to the basket would exhaust me, if I could even get it that high. We can't go out and party like we used to, we have to cancel or cut activities and outtings short. We are far from living a normal life.

It was said by a patient who asked their doctor why doctors and websites say this that the doctor responded that it is to keep patients and families hopeful. Hopeful or not, a lie is a lie. I'd rather know the truth and learn how to adapt. I think this has a big part in others acceptance of my disease. So often I am asked "are you doing better yet?" or "did the surgery work?" or "you'll be fine" or "when you are better." Guess what, we can hope, but the facts are the facts. All of these comments and questions just make me think that person is either not educated on my illness or in denial of accepting this is my new life. Neither is helpful to me and they tend to remind me that the answer is usually no I'm not better, I'm not in remission, I'm unsure if surgery did any good... I don't want to constantly be reminded of the negative I want to live in the positive. The positive is I'm here and I'm doing the best I can! I started 2 blogs, opened an online store and have another plan in the works that I am even more excited about!

Another thing you will often hear and read is that it is not fatal or rarely fatal. Well, being in these groups at least once a week maybe more, I hear of another who has lost someone to this battle. It has been listed as the cause of death for many. I don't mean to get gloomy here but if I'm promoting awareness people need to be fully aware and informed properly. That's why it's SO important to limit my stress, stay out of the heat, not overdo it, take many rest breaks, space things out, avoid people who are sick... basically live in a bubble. Just kidding. Had to lighten it up a bit right? Really though if you want to do one thing to help me stay out of the hospital don't bring on a stressful situation with me or around me. That is THE biggest help personally I think.

Though there are many out there, I'll name one more... the impression that treatments make everything better. This is so far from the truth it's astonishing. Even if a treatment or medication works for someone that in no way means that person can live as if they don't have this disease. All it means is that it lessens their symptoms. That may mean instead of being in a wheel chair constantly they use it only long distance, or instead of not working at all they can volunteer a few hours a month. Again, yes there are those few that will go into remission. It may or may not be caused or helped by the medication or treatment. But there are still many of us who are far from remission and have never seen remission. Treatment does not at all mean cure. Even with remission it is not a definite permanent thing. Many people who go into remission one day, unfortunately, come out of remission and MG is really bad again. The key is that a treatment is a treatment- it is temporary and a chance at helping.

Treatment for me hasn't been very successful. I can only tolerate a low dose of Mestinon because of severe side effects. This means it doesn't help my MG very much. Prednisone rarely makes MG people worse but can. I was one of the ones it made worse, along with absolutely horrible side effects, so I can't use that treatment at all. IVIG made me worse also. Plasmapheresis seemed to have a delayed effect at helping me but all that did was get me through surgery (but thank God that it did). I currently can't get normal plasmapheresis through a central line because of my blood thinners. They would have to try doing it with lines in both arms- which they rarely do and more rarely on smaller people. None of these are very long lasting. They say IVIG and Plasmapheresis can last 3-6 months. Any patient I talk to gets these treatments much more frequently than that. So my next option is immune suppressant drugs, which have extremely serious side effects including the increased risk of developing cancer. And yes there are people who have developed cancer after being on these drugs. But we decided not to start me on that yet since I got the pulmonary embolisms and am on blood thinners. Since I tend to react poorly to so many treatments and medications we didn't want to add another risk in there on top of what I'm dealing with. Doctors and medical websites won't often tell you the bad stuff. I think its so patients and families don't get scared. But personally I'd like to be properly informed so that's what I'm providing to you too.

Lastly, every MG patient is different- very very different. Some patents may have ocular MG so it only affects their eyes, others have generalized MG like me so it affects the entire body. Some patients respond well to one treatment and not another. Some patients have trouble talking, others trouble swallowing, others double vision and can't drive, others in a wheel chair... on and on and on. Just remember what one MG patient is going through isn't exactly the same as the next. But what we are all the same in is fighting this horrible yet rare disease. We wear our teal with a smile because we're fighting this battle with a smile. Teal is the color of MG, and just so happens to be my favorite color. So if you do nothing else to promote awareness this month, I'll end in asking that everyone dedicate at least one day in June and wear something teal. If anyone asks you, and better yet even if they don't, let them know what you are wearing that color for and direct them to my website or another good source of information.

Thanks for reading! Thanks for helping spread awareness! If you'd like to take it a step further, please visit my shop and purchase an item and wear it with a smile www.cafepress.com/fightmg Thank you!