A Tuesday At Home

After listening to Hilary Weeks posted video (she posted it to facebook) this afternoon, (Chelle's morning), I felt a pep in my step to move forward and get out of bed. I decided I was going to make myself cute and put my makeup on, do my hair, and dress in cute but comfy clothing. And I must say I am proud! I didn't have the worst night last night with my sickness ailments but I was up until 2 a.m. and my tummy has been super angry at me since I ripped my Jejunostomy tube out of my Gastronomy tube about a foot. Yikes! I pushed it back in and now am having cramping and nausea when I start feeds but it's complicated and I still am getting my feed in. I truly hope nothing is wrong with it. Yes, I am tired and achy today, my tummy hurts, I have a heavy case of allergies, my head is throbbing. But I live with pain and symptoms so today they are not going to keep me down. At home? Yes. They will keep me in my house today but it's okay because the wind outside is atrocious!  Thanks Hilary Weeks you have me looking at the positives today! So after makeup and putting my hair in a bow, yes not putting a bow in my hair.... but my hair into a bow. (I love bows) I am still waiting for the doctor (neuro) to call me back, my neuro Dr. Saperstein, is on medical leave. I pray multiple times a day he is healing well and coming back to save me! (I know a little selfish there!) you see, I have lost 2 doctors and it has been very hard on me. The other doctor in his practice is filling in for him so I assume since they are busy as it is... I maybe will get a call today or tomorrow. My POTS "flared" 2 weeks ago and is not getting better....lots of irritating symptoms and even more pain. My biggest worry though is at night I might (we think) be having seizures. I started this a few years ago but it only happened in the e.r. when I was super sick with my undiagnosed at the time POTS. Now it is happening regularly and it scares me. What happens is; I am alert but very spacy and brain foggy. I can talk but it's messed up and I can't think of regular everyday words. I am in a lot of pain always. My eyes roll backwards not on my command and my tongue goes to the back of my throat. While I tremor uncontrollably. I also seem to be very anxious but it is because I feel so out of control of my body .... see unusual to do that... it is scary. It always happens at night unless something brings it out. but I need to know why my body flops around like a fish... uncool! So I am nervously waiting to see what the doctor has to say and think... Today I will post a picture of my bow bun... I love them. and I decided to take a picture with my friend IVY. She doesn't get enough attention for all the hard work she does ( yes I am speaking about  my IV pole and yes I am joking) Happy day, Bright thoughts-Chelle