Tuesday, May 24, 2016

Where did you go?!

Where have I been at? I know I have not posted in a while. Here is why... My nights (when I usually write) have been full of horrible chronic migraines. I usually have them for a week every single night in a months time. This month has been two weeks... It's been such a struggle and I don't have the proper medications to control them. I'm not getting good sleep either because I am up with painsomnia. But oddly (and this part I am so very grateful for and feel so very blessed) I am having good days! So my days are pretty good overal. So I have been enjoying myself and getting things taken care of during my good day strike. I have another new symptom that has been around for about a week now. My eye is spasming it is the right eye and it's not just a little spasm it's like the muscle and it's on the eye lid but deeper and then higher up to the eyebrow. I assume it's Dysautonomia. But will be bringing this up at my neurology appointment this Friday. The Iv hydration continues to help and I am after 6 long months of feeling so low, humiliated, and hurting I can now excersice like a normal person I hit a mile a day. Which is like a super big milestone. Have not seen any improvements with my POTS necessarily but my stamina is so much better. And I am of course stronger! I will take it! Because we all know in an hour, a minute, or by tommorow I could be in bad shape. This probably looks like wow I am so much better and healthier... but I still can not function at a normal level. I am still pretty darn ill. With this particular syndrome I can workout but I am still sick. Boo! I started my new medication to help with my starvation (that comes from being tube fed into the small intestine. My stomach remains empty. Of course on purpose because otherwise the food sits in there for hours or days past what it should and I throw up. So by putting formula into the small intestine we are bypassing the stomach and putting right to the source of absorption. And that way no vomiting food. Which keeps me alive. But my stomach gets confused because it's empty so it signals my brain hey I need food you aren't eating... To you are starving! (Even though I get my nutrition through my tube and my intestine) my brain thinks hey we are starving here people. And that leaves me with that feeling and I give into it and 'eat' leading to making me throw up constantly and it's bad news) so this new med I started today and I am not hungry and I woke up this morning thinking I want a cookie and I took my meds and an hour later I'm not hungry. I feel like I can relax for the first time in months! Not fixated on food I can not digest. It really is tortuous. We hope if this medicine works I will have a break and be able to go off of the medicine in some time after my body gets used to not eating again. Time will tell-Chelle      
         I made a new YouTube video on how us Tubies get a drink:https://www.youtube.com/watch?v=KdZcDV_8nUc