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.