ASK ME ANYTHING ABOUT MG

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.

 ellen degeneres ask questions ama ask me anything GIF

A Breakdown for A buildup & I Want EGGS

Everyone always says how strong I am. Both physically and in spirit. I always think to myself maybe physically but I am not that strong spiritually surely not! They say we mean to say you are resilient. I say I guess. I believe them in hindsight, but as I am going through things it is always a bit harder to see. I always have to give myself a bit of a self-talk and say yes I have been through this or that and I can get through this now. However, when it comes to Myasthenia Gravis…to me there are days I think of it like a cancer. I just want to be like my friend and say F Cancer. He use to say it all the time when his brother was living. His brother was strong and a fighter and even when he was on the Up swing he would say it. His brother was famous and was all over the t.v. and I never got to meet him but my father worked with him and I met his brother while working at my current job before he left.

Well last night I said it…I said F Myasthenia Gravis. I was tired of feeling like a slave to it. I usually am so mild about it. Not just in front of ‘audience’ but behind the scenes too. I have to stay strong for my family and never let them know how much it hurts to feel inferior. To feel WEAK. Someone who felt like a athlete who has to feel side-lined. I am not sure get that back and I want it so bad. I have to get back my swimming. I have to get my life back. I have to get ME back.

I said F Myasthenia Gravis because I am tired of having moments when I am not sure why this or that is happening. I cannot always track why something has happened to me because I am an anomaly among fellow myasthenic people. It’s always a mystery to the doctors what is happening to me. I never blame them just work around it.

I saw F myasthenia because it makes me cry. It makes me break down when I want to be happy. It makes me scared where I had no fear. It makes me wonder if I am going to die from something as simple as the inability to clear my throat. Something most people take for granted. You all probably do it without thought often. But when I am symptomatic I do not even have the strength to do that. So then the mucus forms and gets stuck and I am choking. If I cannot calm myself and relax and gain enough strength or get to my suction machine in time, I am in deep trouble. Yes anxiety which I suffer from makes MG worse! YAY me! And believe me calling an ambulance does not help because they will NOT suction you unless they see an object so they just keep talking to you and asking you questions (it has happened). Being certified in CPR/FA I get it but they do not understand MG and they honestly have no idea what it is. They had to keep asking what it was and how to spell it. I had to keep pointing to my bracelet.

I say F Myasthenia Gravis because no matter how much you want to forget you have it because you are stable and things are going well, it always reminds you that you have it. You have a flare up, you have to fill out a questionnaire at the doctor’s office, you do an activity that just manages to overdo a muscle, or someone who hasn’t seen you or know your situation reminds you by asking something like when you guys going to have kids!

So yea last night was another night that I broke down and just cried about things. I was sitting in the car on the way home from my part-time job and had the mucus issue and not enough strength to cough. I panicked. Then I calmed myself and said I can make it home to use my machine and I knew I could relax enough to clear my throat. Many people would say why not take your portable machine with you. I totally forgot. I am not used to carrying it everywhere because when I as sick as I was 2 days ago I could not. I was too weak to carry it anywhere. If it was in the car as everyone suggests I keep it (with my husband at work) I would have died trying to get to it just to use it. I could barely walk let alone lift it (though it does not weigh much). Some people also ask why I do not have 2 of them…I was ‘given’ this one by the hospice of the hospital and that was over a year ago and I have no idea who contact as my insurance paid for it and I have not seen a bill since, even though it is supposed to be paid for monthly…It does not seem to show up on my insurance and I can see everything that comes up on my insurance (charges). So i’m stuck as to who to contact to get another.

If I could just buy another straight out I would, but like oxygen, I think it requires a prescription or something since they ‘train’ you on how to use the unit and what have you. I also need additional supplies soon and so I have to contact someone so… we will see how this all goes.

Anyways, after breaking down I found myself apologizing to my husband who had to witness me come through the door crying. I apologized for crying and being upset as I came through the door saying how I hated having MG. I was just fed up of being afraid. I do not like not having control. I explained that I was just tired of feeling that was and feeling like I was always running out of energy at the worst times. An he told me not to worry and just rest. I said well I would like to and he took my coat off and can you make me some eggs, LOL.

Day 22 of the #loveme Challenge…What makes me unique?

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Man what makes me unique? BWHAHAHA! I feel like that is a loaded question! I am unique in so many ways. I strive to be unique I love being part of #teamweird. As my mom calls me her honey child running wild. So it doesn’t say one thing, in that spirit I will name a few things. For one and the reason I started my blog I have Myasthenia Gravis a rare neuromuscular and autoimmune disorder and many days I forget I have it because God makes me feel awesome (though I do get tired more easily). I enjoy education, like I seriously learn to learn! I know that sounds crazy! Obviously in things that I am interested but if it’s about psychology I’m all ears and can listen to someone drone on forever. I love music from EVERY era and in EVER genre (I haven’t found something in an era or genre that is likable). I strive to be me and that is unique, but more importantly that encompasses being me no matter where I am! I enjoy trying to be different and think differently about every situation and how I can bring a different ‘something’ to every situation, circumstance.

Better treatment could be on the horizon for Myasthenia Gravis and possibly other autoimmune drugs!

So I was going through my google updates and saw this nifty little posts. I am apparently a bit behind. This is definitely giving me hope as it is quite annoying to have your immune system even more compromised due to meds you take and to have to wait 1-2 years for them to kick in to see if they are even compatible/ effective for you. So I am praying for the better treatments!

Myasthenia Gravis (MG) is a debilitating and potentially deadly disease that can afflict anyone, characterized by severe muscle weakness, affecting control of facial expressions, arm and leg movements, chewing, swallowing, coughing and breathing. There is no cure, only treatment.

Source: Better treatment could be on the horizon for Myasthenia Gravis

Motor Mouth VERSUS MG…FIGHT

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I feel like I am in an old school capcom game like street fight when it comes to MG sometimes. I love to talk and it reminds me that my throat, tongue, and lips are made of tissue and muscles. My illness being a neuromuscular illness these areas are affected. In fact for me these areas are affected FIRST. I am a VERY talkative person and so when you give me a disorder that can limit me or cause me to shy away from that, well you have definitely put me down…(for a bit). This has definitely helped reduce my anginophobia as well.

I start to slur and have trouble swallowing and have to sit and rest my mouth for a bit on my weaker days. But luckily I have not had to much of that in the last 2-3 months. This is a first since getting the disorder.Though with stress if I get upset enough in a day I can actually cause slurring and some tightness in my throat after relaxing for a 30 minutes it goes away. Whereas in the past I would be stuck like this for a a day or more or until I took my next does of medication. Sometimes if I was really weak I would be stuck like this for several days and know it was time to call the doctor and ask for a treatment before I needed to be hospitalized. Right now those treatments have gone from every 3 weeks, to 4 weeks, 6 weeks, to now we are trying every 8 weeks. Our goal is 12 weeks minimum.

I have faith this can happen!

The Good, The Bad, and The Hilarious: Part 3

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And here is another riveting edition of the dramedy that some would call my life, LOL. I call it an action drama! I find it jam packed full of action and comedy. I do not find much on the front of drama but I I’m not sure they have a catchy name for action and comedy yet!

Anyways, if you have been following my blog you know I struggle with Myasthenia Gravis (MG) an autoimmune and neuromuscular condition. If you are new to the blog…Welcome, LOL. It It weakens me at times but it doesn’t stop me and herein lies the problem sometimes, LOL. Sometimes I underestimate what I can do because I believe I can do more than I can or I push harder than I should. I am so used to being super strong because I work in a profession that has embodied such and I will not falter in that thinking that I forget that I will have weak moments physically, LOL. (I’m a Sr. Health Fitness Specialist and I have degrees in psychology as well).

  • So when you decide that you are going to go shopping and until you drop and you actually DROP… WELL all you can do is laugh in the irony! At least I do!
  • Or when you decide I have worked out and your muscles are nice and sore (because I love that feeling) and you go to foam roll and you can barely lift your body onto the roller and then get up and stagger like your favorite scene out of NAT GEO WILD and die laughing but no one else knows why you are laughing…images (1)
  • OR the final moment of FUNNY… you go to do your hair and your arm gets tired and you refuse to rest because you are almost done and you know you can fight the fatigue and have one pin left to do and WHAM you arm drops and slaps you right in the face! A true slap of reality that all you can do is laugh until you cry real tears doubling over until your belly hurts. (I could not even get the words out to my husband of what happened because I was laughing so hard)

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Though these things improve with rest and treatment, some people ask me how I could laugh! I say I have a great sense of humor and I know that God will be there to catch me. I also say I am still alive and it could always be worse. I have been worse and I know that this is just me being stubborn and silly! I prefer to laugh as I have always done in life because laughing is better than and in the end if I can laugh, it means that I can heal faster! I really and honestly felt the laughter in those moments, it wasn’t forced, and people may say I was sick for the thoughts in my head at those times, but it is what helps me get through my life, why focus on the bad all the time? I prefer not to be a sourpuss all the time!

FIND YOUR FUNNY!

MG as autoimmune?- Hilarious Moments

Some health professionals still do not see MG as being an autoimmune disorder. However it is defined as an autoimmune neuromuscular disease…We do have a weakened immune system. Moreover, with the medication that we take our immune systems become even more compromised. I was someone who never got sick before this disorder. I have found that I am more susceptible to colds and flu now than I use to be. It is quite annoying. It is so bad that I have to wear a mask at work during cold and flu season to help prevent getting sick. I also avoid large crowds during this time of year such as going to church and sometimes packed restaurants because people tend to be more closely seated and if they are sick and ‘hacking’ everywhere I am likely to get it.

I have become something of a germ fighter, LOL. I have been hospitalized due to how severely my body breaks down after getting the flu and I cannot take the flu shots. I got the flu shots the first year after being diagnosed and it put me in the ICU. So no more of that. I have just learned I cannot do hospitals when I am healthy or be around kids.

I also prefer not to go places like this where I will have to wear my mask because people are ignorant!!! They step away from you as if you are contagious when I am trying to prevent myself from getting sick because they are coughing uncontrollably. The following things have been said to me while wearing my mask during cold and flu season at my job ( and not by people who were my friends):

 “I hope you get better soon”- I say you too…because I am not ‘sick’ in that nature and you shouldn’t assume so especially when we work at an Asian company (based in the US) and you guys travel there often and know they wear masks based on air qual

“Watch out for ebola over there!“- Seriously why would you make a comment like that when you have no idea why I am wearing a mask.

Why would you come to work if you could get sick?– Well just like an ADA law you cannot tell someone they cannot come to work if they can be accommodated and still do their job. However, why would come to work if could get in a car accident?

How long do you have to wear that thing?– Well it’s a mask and until cold and flu season is over…as you’re coughing and your nose is running in my face…

You should draw a face on your mask because we can’t see your expressions!– Believe me you don’t need to see my expression, it would give away the dumb look I have that says you are an idiot! After wearing them for 3+ months I had to learn to stop muttering under my breath and stop making certain faces since I no longer had a mask to hide behind.

Do you wear the same mask everyday? No I have a disposable sterile masks because that is sanitary other wise is defeats the purpose.

Will you have to wear again next year?– Yes for the millionth time yes! I explained this when you asked about the mask in the first place when you were trying to gauge if you should run and realized I was safe. I will have it on each year during this time unless I find another job where there are less people to interact with on a daily basis.

I will tell you I can laugh now but when this was going on I was very self-conscious and my husband was livid! I wonder how I will feel next year! I think I will have some quips ready!