Thursday, January 19, 2012


This to shall pass, really? How come it is so easy for me to say or write these words to someone when I am feeling okay but when I feel like shit, pardon the grammar, it isn't that easy for me to believe it is true for myself?

Usually that is how I feel okay. Okay is good for me! I appreciate okay, I really do. Great is never in my vocabulary but I have come to realize it may never be again but I am okay with that. Just when I think my okay is, well okay, I get slammed down for no reason at all. This week is not a good week and it is very discouraging to be in the middle of this hell. It has been five days now, isn't that enough? Really? It is for me, can you see the white towel waving? I feel I have paid my dues so today I was suppose to wake up in the okay mode and instead and still in the hell mode. I had plans today with my parents, not much but something. Now it seems there is no way I will be accomplishing any of them today. I was going to give my mom a perm and cut my parents hair. You see I use to be a hairdresser until these stupid autoimmunes stole that from me along with most of my life. I do not do much hair anymore at all but the few I do like my parents Rich and the kids gives me some connection to being the person I once was. It helps me to feel like I still contribute something to the world even though I am unable to work. But then I feel like this and on these days I can't even do my families hair, the people who understand and see the hell I am in, the people I want to help and do things for. It sure isn't easy!

So this week I sit. I don't mind, too much anyways. I get to do a few things I don't get to do a whole lot when I am sitting like art and tv. I try not to sit down during the day, on okay days, but when you are weak and ill  you are forced to listen to your body because there is no way you can do too much. I might fall or pass out so I just listen. Listen to the body that controls my life, for now at least until this hell passes.

The worst part about feeling like this is I never know if or when I should call the doctor or which one to call. Do I call my primary doctor because I wonder if I have anemia? Do I call my Neurologist and see if it is the MG? Do I call my Rheumatologist because it is the arthritis? It is so confusing. So what I usually do is treat myself. I know what they will say anyways so why not treat myself? Try the Mestinon for weakness, increase the steroids a little to see if that helps, just rest. So yes, I have become my own doctor. I will continue to try my own doctoring and see what happens. Today is increase the steroids so by tonight I might want to kill someone but hey I might feel better. It is such a give and take.

I am being forced to sign off because my vision is so blurry I can hardly focus. It is so annoying especially since my vision has been okay for the past few months. At least since the last time I saw my Neuro when I was seeing four lines on his test where I was only suppose to see one. This week the blur is so bad I can hardly make out Rich's face when I look at him. This is with my glasses on. I always try to remember what my Neuro, Dr Glisson told me. When your body is going through a lot of issues the brain is trying to process all of it and the eyes are the first thing to be affected. Your brain does not care about you seeing because it is trying to take care of all the issues going on in the body. Those few words from him encourage me to know my vision will get better, I mean okay, as soon as my body decides to get back to the okay state.

For now I push on. I try, as hard as it is, to stay positive and remember this will pass. Soon I will feel okay again. It is so funny to me because when I am bad I can't remember what is like to be good and when I am good I can't remember how it feels to be bad. For now, I push on, even if it is on the couch.

God Bless!


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