Were not alone

Sorry I have not updated lately, this past weekend was rough!! I'd stand up and feel like I would pass out and my heart rate would sky rocket and I'd lose my breath and then tell Wonder Woman yeah not moving for a second. I found out friday night when my neighbor knocked on my door. I haven't had an episode like that in YEARS. Lasted the weekend. Then I was on pinterest, and I found thru Dysautonomia Internationl that putting your hands above your had CAN trigger you. Well guess what I had been doing?? Arm work outs and lifted my arms over head 36 times. Because I found another website how to exercise with PICC lines and that was of the moves. Why Superman always tells me to STAY OFF THE INTERNET when it coms to my disease. I see my friends reading this and going really?! And then going yep thats my girl!! lol I started feeling better then I reacted to the air and was way to much benadryl. Then took a prednisone with a shot of benadryl while my nurse (read Wonder Woman) just looked at me like "Really" I was doing a treatment still not doing well and NEEDED more and getting up for water was asking to much. But the good news is, it never progressed and I am ok. Which leads me to my next story.

I needed my oxygen when I was out today, bad lungs last night with the heat of today... When I was out I had stopped by starbucks like I alway do. And the girls that were there yesterday (yes I am there that often) saw me with my oxygen and made sure I was OK. They were actually concerned why I had oxygen and what was wrong. I explained last night, my lungs, and explained I just needed it to function today though most days I do not. Its nice to see there are people out there that truly care about me. Even if they do not really know me. I am sure most are like its there job to be nice to me. And know it really is not. I have walked into places and people refuse to work with me because I have oxygen on or I have a PICC line. I have people treat me as though I have the plague because I need oxygen or IVs to survive. I mean really?? I need a LOT more then that to survive its just not that visible. Sif has seen it more often then not, I am oblivious to it now a days. She's not so much anymore.  I've had people stop talking to me cause of all this before. STOP TALKING TO ME. So when a stranger shows concern about my health its just beyond amazing to me.

It makes me realize that I am not alone in all this. Some days I feel like I go through this alone, and those around me do not even so much as comprehend what I go through, that no one can possibly go thru this "with me" because they do not live with the symptoms that I go thru. But that is the most inaccurate thing about all this. They have to watch me go through all of this. They see me one day and I am ok and the next I am not. Or they see me be OK one minute and barely functioning the next minute. They have seen me fight for my life in ways most never even think about. Struggle daily to common daily things. They have seen my in the hospital struggling to just walk across the room, when they knew the girl that worked and went to school all of these years. Its just as hard on them as it is for us who are chronically ill. There are people that don't "get it." They haven't been there with us when we think its a huge accomplishment to walk with an IV and oxygen, to seeing us walk the mall with just a small tank of oxygen and not collapse after words. The ones that here your sick and make you laugh because they know you are hurting. Call you for hours just to make you smile, or FT you to  play with the puppy in a first person gamer type way. That is going thru it with you. They see what you go thru, they feel your emotional pain and want to move mountains to make it better for you. That is when you know you are not alone in all this. You have people by your side fighting with you to get better.

But I must get off here, I for see fresh Teal hair in my future...
Love Y'all
Poppet~