Why are we on a sinking ship?

It has been 28 days since I had my catheter put in for maintenance PLEX …. something tells me that when the doctor calls for the conversation tomorrow with my dad … they aren’t going to get nice papa but mean papa bear …. thank god I have a dad so amazing to go to bat for me when doctors won’t listen to a word I say ….. and come on … how many vacations do you really need? This whole process has been nothing but a struggle and half of me wonders if it is even worth it …. though the answer to that was with me all morning. Obviously Aurora is the whole reason for me being here and fighting, but I am human and it gets frustrating …. especially with the care I have been receiving and the runaround my doctors are getting from ‘the big guy in charge’ and not to mention the actual care that I have been getting for my catheter line … it’s less than adequate … I have had a total of two dressing changes in 28 days. I have had zero flushes in 28 days. I am terrified that when we eventually go to actually use the line that it wont be useable and I will have to have another put in and be in pain all over again. But what if it is worse? What if something happens to me because they are doing so little with patient care?  But it’s frustrating and brings me to tears …. why did we all have to be lucky to be on this ship together as NMO patients? I am so frustrated. Tears spill constantly and I feel like people don’t understand. This isn’t easy. The only people I know that truly understand are those that have gone though it, and I know that they are all rooting me on but it is so difficult. I feel, at times, like the world is pressing down on me. It’s frustrating and I know I drive my family crazy but to be honest I just don’t know what to do anymore. This doctor who is supposed to be doing the PLEX treatments decided he doesn’t feel that they are necessary that the initial one wasn’t necessary. Then I had this (pardon my French) B*tch at the hospital at his office tell me that it’s like this “it will all come down to whether or not you want to have money or if you would rather be healthy”. What the hell? Obviously I would rather be healthy and poor if it came right down to it. I can do without material possessions I can’t live without my sight. What if I get optic neuritis again? Each time I loose more and more of my sight and I just can’t take it. I feel the need to vent but come on … who wants to loose their sight? It’s bad enough when you are left with damage after one attack but I have had so many on my eyes … both eyes. What if next time it’s my good eye and it goes completely black and I am left in the dark? I don’t think I could handle that.


As always I fight on, as I must, and always will.


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