I apologize...this post is way over due. I've been completely bed ridden with the most awful migraines these past few weeks. It's something that I have never experienced before and it's rather frightening given my recent diagnosis with Alice In Wonderland Syndrome. Matt and I have been to appointment after appointment asking questions and getting tests done. We are both left feeling uncertain and afraid. We have even went as far as to give myself B12 injections in hopes that it would make me less lethargic and boost my energy. (Well Matt administered the shots. I think he liked it.) Narcotics only seems to numb the pain for a short time but then it comes right back again. I literally go to sleep with a headache and wake up with one... it never ends. I had a spinal tap yesterday but my spinal pressure was normal. That's good news of course..... but it doesn't give us an answer to our mysterious headaches. They are sending my fluid out to be tested and we will hear about that later. I really want another MRI because I haven't had one in over a year now and don't understand why my Neurologist hasn't ordered one yet. You would think that would be the first thing that one would do..... I'm frustrated because he didn't seem concerned at all that I had a headache when Matt called him and told him that I had had one for several days and it wouldn't go away. (Matt is such a dear, he calls and makes all my Doctor's appointments and talks to them for me because he knows it stresses me out and because I work at a call center and I can't just pop off the phone whenever I want to make calls). Anyhow, my Neurologist didn't even seemed concerned that I was having these headaches..... he didn't even care to see me. All he did is prescribe me a mild pain medication called BUT/APAP/CAF 50-325. Which seemed to work as well as Advil. So as the headaches continued they got more intense.... at this point we can call them migraines. They are so debilitating at this point the only thing I can do it lay on the couch with an icepack on my head and shut my eyes. I couldn't even bare sound or light. I was taking Advil/drinking a few glasses of wine because it seemed to work better than what the Doctor prescribed. Seriously it did! It finally got to the point that I started t get paranoid that I was going to die. I was sure that I was going to have an stroke or an aneurysm. I still am scared. I still haven't had a fucking MRI. I could have a flesh eating organism eating at my brain little by little for all I know... that would explain the short term memory loss. Oh and here's the Cherry on top of the cake. My little Asian Neurologist (I love Asians don't get me wrong) told me I was over weight. WTF! Medically speaking OK maybe.... but aren't you a neurologist? Is my head over weight? Let's just stick to my bloody headaches then. Random.... you should have seen Matt's face. I think he was scared I was going to sock him one. Truth is I wasn't surprised.... tell me something I don't know Doc...... like why I'm having these headaches. Maybe if I didn't have epilepsy and wasn't having seizures and wasn't so lethargic and having headaches like a son of a bitch I could work out like a normal person..... but I'm not normal. Ugh.
Sorry for my rant. I haven't lived a normal life for about 2 years now. I don't even know what a normal life is. It's not all bad, I still have fun with my girls and have a very loving husband and our little fur child Lucy. I'm lucky to have a very supportive family even if they are very far away in Ohio. I miss them and can never afford to make trips up to see them because of all my medical bills. Poor Matt, he didn't know that he was going to be marrying a sick wife. I used to be so full of life and energy. I was so tiny and petite... like a little ball of fun. I miss those days. I would bounce around the room and Matt's face would light up, now I'm just a sad sack of shit. I'm working on it though. I want those days back so bad.... everyday I try. I get up, get dresses in a cute outfit even though it's tight as fuck because I gained weight from this whole ordeal. I go to work and I see Mandy and we have a laugh and I go home to Matt. I crochet and make things to sell, I still do things to make myself happy. I have this blog and that makes me happy. It's just hard sometimes.... to keep up with life and to always be on top of it when you just want to give up. This is totally a page in my Diary now...... yes this is very personal. I figure I already told you that I stuffed my underpants as a child and that I'm a perv because I used to draw Sailors pissing on Mermaids and I'm a super perv because I adore the book "Lolita". I thought you mine as well know the whole Taylor. So this is it. I had the Radiologist take a picture of my spinal fluid but I'm on a Mac and have to upload it through a PC so I'll have to do that from work but I will update you on everything. Feel free to ask questions.... I'm all about questions if you are curious.
