I took these pics of myself just so I could share the affects of Myasthenia Gravis and what other Neurological Diseases can do to a person. The main reason I took these pictures is to show my doctors so they can see what I am like at my worst. It seems many times when I go to the doc I am never at my worst so they never actually see what my worst is. It is like I can show them and say nanananaana this is what I am talking about. A person couldn't make this crap up if they tried!
When I took the first picture I was in the dooms of hell. You can see what I mean when I say my right eye droops. I was so weak that day that I could hardly hold my head up. Taking a shower or bath was nearly impossible. I even skipped a few days of washing my hair and doing my makeup because I was so weak. You know I was sick then!
The second picture was after I started on the steroid increase. As you can see I was able to wash my hair and do my makeup. Although I was still not doing well at least I could see out of my right eye and I could take a bath, wash my hair and do my makeup. Granted that is all I did that day but at least I was able to do that. If you know me I rarely go a day without doing my hair or makeup. I made a deal with myself that no matter how sick I am I will do at least those two things every day. Well, I had to break that deal when I was this ill. It is funny when you are feeling okay you can make all the deals you want with yourself but when you are in the dooms of hell all those deals can be broken in a flash. But like I always say, this too shall pass, and it did, to some degree!
Now I am back to the stage of asking myself, will I wake up like that again? It seems it is so easy to forget the bad days when you are in the okay days and when you are bad it is hard to remember the okay days. It is such a struggle and probably makes no sense to you unless you are ill. All I can compare it to is if you have the flu but you never really recover then add ten other things on top of that, not very much fun to say the least. I am truly happy for the people I know who are healthy! I would never wish this on my worst enemy.
As I continue to recover from this past three week blow I look around me and know how blessed I am. I hear of a kind heart woman/friend whose cancer has returned. I watch my daughter struggle as she has had some unwanted medical news this week. I hear of children being beaten and killed by boy friends. I see people argue about the stupidest things that are meaningless. I see negative comments on facebook or in the newspapers and I realize there is no reason for me to be down. I am one of the blessed. I press on, I pray for those who need it, and I appreciate this thing we call life! I hope you are able to do the same!
God Bless!
Dianne
I hope you know how you help me to better relate to those who struggle as you do - don't stop sharing Dianne, it has a purpose!!
ReplyDeleteI'm glad you pointed out that you're often not at your worst when you see your doctors. I just had the pain guy look at me and refuse to write me a note for work because "I looked fine" to him. That was AFTER taking an hour to get ready for an appointment only 1 mile from home at 11 in the morning. I didn't know how to tell him how much work that was for me to get ready. I cannot imagine trying to put that much effort into getting ready at 5 AM. And then driving 30 miles to work and actually working 8 hours before driving 30 miles home.
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