Needless to say doctor’s appointment didn’t go well, I have to go back to Boston for some more test, my blood pressure is high again for no reason and they believe it’s because of my kidneys even though I had a test last year and they ruled it out they want to take another test because people with my illness had a tendency to have a thinning of the renal artery, also when I explained about my hearing problems they brought up my last MRI (the one after my surgery) to tell me something they never told be before, In my left ear which is the one I am having the issue with there is some soft tissue which they believe is a plexiform neurofibroma ALSO that I have more neurofibromas on the top of my spine and the sides of my neck, so that could also be the cause of my problems because there are on my nerves. So honestly I don’t know what to think at this moment I won’t know anything till the tests are taken I am just sick of all this happening to me. I thought my blood pressure would be lower this time, I have been working out and eating healthy so I just don’t get it.

I have another appointment to see my surgeon, take an invasive hearing test, see the kidney specialist and get an MRI. Guess this means I will be back and forth from Boston again. It’s always something.

Since no one I really know in person can read this I will say even though I have said I am not worried I actually kinda am, I really don't want to have to get another surgery and be stuck all alone in the hospital overnight, I don't say this or admit this often but I am scared, I don't want to have to take pills everyday for the rest of my life, I really don't understnd why my blood pressure is so high, I work out 4 to 5 days a week drink lots of water I don't drink that much and their is not a lot of sodium in my diet this scares me cause what if my renal artery is thinning? I don't even know what they would do for that put a stent or whatever it's called in there? All I know is I wont know anything till the tests are done and looked over it's just the waiting I hate. I know high BP runs on my Dad side of the family but my sister has normal blood BP, why me? I know that I have been really lucky for far for someone who has NF1 only having to get one surgery for it in my lifetime but still why all of a sudden all the issues, I was fine for 17 years than once I hit 18 I started having problmes with it.

I was fine after the surgery my BP went down to normal all the neurfibromas I have on my back got smaller and no longer hurt me, Now I am 21 and the problmes are getting worse again, I am back getting horrible headaches, and now this with my hearing and my BP is back to being high? This really sucks big time,

I am about to sound really lame right now but I wish I had someone to cuddle with tonight I am being such a needy bitch but I want someone to just hold me I am feeling really lonely a moment of weakness and all I want is for someone to hold me in thier arms and tell me everything will be ok. It would be nice to have someone to sleep next to night so we could cuddle I would feel so much better and would actually would be able to sleep tonight, to just help me clear my head from all this.

I also don't admit this often but I am a girl I don't like sleeping alone I miss that about being in a relationship, I miss falling asleep next to someone and being in their arms or just next to them, laying my head down on their chest listening to thier breathing which always helps me fall asleep, I'm so short and small and just laying next to a big strong guy just I don't know it makes me feel safe, I miss that a lot, I miss that when I am cold like I am now being able to sunggle up and how fast I get warm from their body heat, ok well thats enough of me being a winey bitch.