I am lucky that at least one parent is always around, so I am never alone during an attack. I take my medication as soon as I can swallow, which I try to do as soon as I feel it coming, to try to prevent it from getting too severe. It is a problem that I only get about a minute or two warning. It is not enough time for the medication to start working, but at least I get to swallow it before the choking/fainting begins.
Yesterday was an example of how these attacks are unpredictable. My Mom and I went shopping for pajamas with buttons on top, because I am going to be admitted to the hospital next week for a three-five day seizure study (complete with video EEG/cardiac/pulse-oxygen monitoring), and I was told that I could wear my own clothes as long as the tops had buttons or zippers (nothing over the head). I was glad they allow me to be comfortable! We found some very comfy pajamas at Kohl's and got great deals with coupons.
My Mom and I then decided to stop for some lunch at one of our favorite local deli's. As soon as we sat down she asked if I felt alright...I told her I was kind of tired and sore from trying on clothes, but was okay. I should have listened to her. She knew by looking at my eyes that something was wrong. Right after eating I started feeling my "aura"...my head started to tingle and I got VERY tired and fuzzy feeling along with muscle spasms in my back. I immediately took my medication and my Mom went to pay the check. I was LUCKY to make it to the car before I fainted and went into spasms.
My Mom has video recording of my attacks, and has shown my neurologist, and other doctors, which is why I am going in for the study. The neurologist does not think it LOOKS like a seizure, but he said he has been wrong before from just looking at a video, and the same has been true when he looks as a video and thinks it IS a seizure and it turns out NOT to be one. He said that any neurologist will say the same thing, since there are so many different types of seizures and brain activities they look at during the study. If it is NOT a seizure, then he will do an MRI of my cervical spine and possibly my thorasic spine (with contrast), to see if there are any lesions or demylenating issues. This made me feel more comfortable because he is not giving up if this one study comes up normal (which I think it will).
I was upset that I was unable to attend the Walk to End Lupus Now 2014, which was last weekend. I had flu like symptoms/high fever/spasms/fainting/ I also fractured my 9th and 10th ribs from coughing and being "sick", along with having such severe osteoparosis. I am just happy that I did not have to up my prednisone to get through the illness. I think that is a first...
Although I did not attend the walk, my team did manage to raise about $1,000. I am VERY proud to have donated that amount to The Lupus Foundation of America, Florida Chapter. We are an incredible chapter that is reenergizing with new, incredible board members, that I was fortunate enough to meet last night. My parents were wonderful, and took/stayed with me to my board meet/greet. I know it is not their forte to share their feelings and story with groups of people. That is MY thing, and yet they did it for me. My parents stayed the whole time, listened and shared...and their support means more to me then they will EVER know!!
I know my Mom wants the Board to be something "just for me"...and I appreciate that, but I also love that she involves herself whenever I ask. My Dad is not a "sharer"...and yet he did that for ME...it is the little things like that keep me strong and keep me moving forward when I just want to throw my hands up.
This video by Christina Aguilera, Fighter, has become my new anthem...I am a FIGHTER because of what is going on in my body. I will NOT forget what has happened, but I will allow it to make me a STRONGER person...I am trying very hard to not allow my illness or fear to run my life, so I keep this song in the back of my mind, and play it often as a reminder. I AM A FIGHTER! I have been through so much and I keep going...
You ARE a survivor, can I say, a THRIVEr. Your body may not feel stronger and growing in the way you would like right now, but you, dear woman, are a force of strength and inspiration to me. Keep us posted.
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