Hello all. I know it’s been a while since I lost wrote. Things are still incredibly stressful. Living here, at my dad’s has been feeling more like a prison sentence than anything. I just feel like there is no support here, and just constant stress and tension. Which causes my son to act up. I’m just so over it all. Receiving a new diagnosis was even more difficult. Now I have POTS, postural orthostatic tachycardia syndrome. I’m learning to accept this as well.
I’ve had good days, but mostly bad days. The pain and brain fog never really goes away. The heat intolerance and inability to sweat, I sometimes fear could kill me. Though here, living in Florida, what am I to do??? My boyfriend has found a bed that has a cooling system built in.. I’m currently working with my insurance to see if it could be covered by my durable medical equipment. If not, I’ll have to pay for it, but at this point I’d do it. I’m getting too hot to sleep at night, too hot to the touch. Though my boyfriend is always there calming me down, keeping me positive. I’ve learned that through all this, he’s a great man, and amazingly supportive boyfriend. I’m truly blessed to have him. He keeps me positive, he reassures me that when I end up in a wheelchair he’ll be right there. We’ve been told by doctors I shouldn’t be driving. Bye bye freedom
I pray things get better, if not, I have the love and support of my family, my boyfriend and my friends.