On a day that hot chocolate didn't even taste good

    All morning I kept telling myself, it's going to go smooth today, it's going to be okay. Dr G. (General) asked questions but after I left I think he should have asked more. He said that I have another neurological issue, occipital neuralgia, in short a pinched nerve in the back of my head. This is separate from the ATN. He gave me a referral to go to physical therapy three times a week for a month. Then I will go for more blood work and see him soon after to follow-up.
  
    I don't even know how to feel. I took M to Krispy Kreme and as much as I love hot chocolate and donuts, today I wasn't in the mood. The pain is flaring up and I don't want to use my head. I have no appetite therefore I am afraid to take a pain pill.

New Horizons

Much of what I feel I write is sad and whooaa is me. I don't know how else to express my feelings, pain and questions that I have. But again I need to be thankful that I have choices in my medical care that others may not. I will not settle for less, I want someone to to 'sell me', why should I pick them to be my doctor. It seems as if we choose a doctor from a list and that's it. Why can't we speak up and say "Hell no, I'm not putting my life into your non-caring hands".

Today I met with the new Neurologist (Dr. T.), she was what I needed right now. She was knowledgeable and took an hour to meet with me. I understood, like she said that most of what I am going through is not a guarantee. I got up this morning in a very somber mood. I missed my friends and I can't wait to see me parents. J and I are not really meshing right now. That's hard! The first time in 7 years and we don't see eye to eye. S is only a phone call away, but it's not enough.

Dr. T made some suggestions; that if I'm in pain the current medication isn't working. True. She knew exactly what I was feeling and going though. She wants to see me in 2 more weeks. We spoke about the Gamma Knife Procedure, I told her that I in general I didn't feel comfortable with any of the surgery options. But the only place that I received information was from the John Hopkins Web-nair. She said we could take it slow and see what happens.

In March I applied for Social Security Disability and was denied in May. She asked me if I was going to appeal it and I guess that's a hint that I should look as that that as my possible future. (Worst Case)

I have another appointment with a new General Doctor tomorrow. And since I'm here in Vegas I can only put all of my money on hopping he is wonderful also.

I cannot say enough how much that I miss all of my friends back east. They were so much more than friends they were my family there.

Looking for my place here

    This sure has been a railroad. I'm living in the city that I love. J has found the greatest job, only now could I see how unhappy he was at his last job in Delaware. I'm happy that he is happy. I do miss my friends. Being here alone is different. Harder I guess. M is a bit lonely too. I can't wait until my mom and dad come out to visit. I have had pain everyday since I have been here. It ranges from my lips and chin numbing, to the stabbing pain in my ear. I know moving is very stressful and it has been. The man who we rented the house from has not made it any better. I think he just wanted us to move in here and take care of everything, so he could just collect the rent. I mean it's a very beautiful newer home but I do not own the home, therefore I should not be responsible for things that should have been fixed prior to us moving in. Ok, there I got that out to the world. Whew! They say that stress can add to the pain and I think it has.
    I'm glad that my friends back east miss me too. We have been Skyping, so it's like I am outside with them still. :) Our neighbors seem very nice here, but I feel as if I'm alone more than ever. I have 2 doctor appointment this week. I meet with the neurologist and then I'm going to see another family doctor. Hopefully this one is better than the last.
    I still have so mush to do, after moving things. But I often forget, and I remember at a time when I do not have a pen and paper with me. So I'm slowly getting things done.
    The relocation company finally delivered my van. Yesterday I went to return the rental, and I forgot M's car seat in it. So we had to go back and thankfully they still had the car and it was in there. I feel dumb when I do things like that. I guess I still remember that I wasn't always like this so when I do things like that I am angry.

I don't even know whay happend to the color

Starting Over?

    Today started off VERY early. Since the relocation company has not delivered my car yet I had to take J to work at 6:20ish. He likes to be early. M and I came back and got ready for an appointment with a new doctor. I find the place and it has a Hawaiian name. Great, everyone has a catchy name here even the doctor. As I was getting ready to fill out the forms, I asked the receptionist/nurse if he wanted to make a copy of my lab results. He said it wasn't necessary. RED FLAG!! Why wouldn't it be necessary? The doctor comes in and he starts making comments about all of the medications and questioning me. I knew this was coming. I tell him on my list of medications the one from Dr.K.G. were the ones I need him to take care of. He starts questioning all of the Rx's that the other specialists gave me. I explain to him that I try to manage the pain at home. Also my past experiences, and why I do not go to the ER when I'm in pain. He seems to disagree. I should go to the ER when I'm in pain and get morphine or nerve blocks. I re looked at the degrees on the wall and do not notice anything for neurology. After glancing over my past lab tests he said well lets order everything to see where you are now. CBC, Vit D level, Tegretol Level, Liver and Kidney function. He wasn't concerned about the past tests, the doctors notes, or MRI results. As I was sitting in the hall waiting for him to print everything out, tears were in my eyes. I had asked him in the room, "Is this all too much for you?". Maybe he took it as a challenge. WHATEVER!!!! I cried all the way to pick J up. We had a nice lunch at Whole Foods, and J suggested that maybe I try somewhere else. I'm chalking this one up as a bad day. It's 2:21 Las Vegas time and I'm going to just lay my head back on my pillow.Today started off VERY early. Since the relocation company has not delivered my car yet I had to take J to work at 6:20ish. He likes to be early. M and I came back and got ready for an appointment with a new doctor. I find the place and it has a Hawaiian name. Great, everyone has a catchy name here even the doctor. As I was getting ready to fill out the forms, I asked the receptionist/nurse if he wanted to make a copy of my lab results. He said it wasn't necessary.

Monday...blah

     Yesterday was Father's Day and I felt horrible. J deserved the best and so we went to the Rio for their buffet. Yum!! I think it's all catching up with me, all of the moving. We have a house full of boxes that is slowly dwindling. For the past week I wake up in so much pain, I feel as if I don't even want to open my eyes because my teeth were aching again. Yesterday as we were walking through the casino to get to the buffet, the lights and the noise were adding to my already aching head and ear. When we were walking back, a man preforming an act was screeching and I held my ear closed to save myself extra pain.
    This morning I opened my eyes and closed them again. I couldn't even bring myself to get out of bed I was in so much pain. 2 hours later I heard my phone ring, it was J checking in. I needed to get up, I have so much to do. The sooner all is unpacked the sooner I can start into a routine. I have an appointment tomorrow with a new family doctor. I don't even know what to expect with these new doctors. I hope that they do not want to just up and change my medication. I understand that we are in a new climate and elevation, so adjustments may need to be made. Who knows?
    J loves his new job and with his hours 7:00am-4:00pm it works out great. When I went in to visit the facility everyone was so nice and welcoming. How refreshing. M is loving it out here. She looks as if she is a permanent tourist. I think she just like saying 'Las Vegas'.
    I'm hoping that we can make it out to Irvine, CA in the fall for the Facial Pain Conference. It sounds like they are going to hit on Atypical TN with ideas to relieve pain. That would be interesting.
    Right now I am just going to wait until my parents can make it out here. It's a 10 hour drive and they like to drive. I haven't seen my dad in 2 years and my mom in over a year. But I know that 1200 miles closer gives me some relief.

Just Waiting

    A funny thing that I never noticed before about Casino Hotels, even though you cannot smoke, they smell like smoke. M and I tried to busy ourselves, but the noise and the smell was killing me. We would have gone other places but they aren't delivering my car to me until the 23rd-28th. So as said before J and I decided to get what we needed to and stay in the empty house.
    My 1st doctors appointment is next week then 1 each week after. I hope to get some new answers. Surprisingly it wasn't hard to get into any doctor out here, not like Delaware. Thankfully! I forgot to take my medication one morning while staying at the hotel and could feel the effects. Even here in the house I still feel out of my norm. This sounds so stupid but, as I walk upstairs in this big house I start to walk down the wrong hall to get to my room. I joked with J and said I will have to find some arrows to hang on the walls pointing me to the right direction.
    Like I have always said my long term memory is still there. We went to dinner last night at a place I went to 11 years ago and was able to tell J right were it was. So here in the city I'm not lost. I know the streets and will just have to work my way around with a map in the new areas. But unlike DE I love to see the mountains. I don't want to go there, but to see them makes me feel good. The roads are wider, the streets make sense, and we belong out west. Sadly, I woke up this morning in a panic, I couldn't remember how to get into the neighborhood. Or out of the house. I hope this feeling will end once we get all of our furniture. The pain has been showing it's creepy little head again, and I blame it on stress.
    I love it here and I feel as if this was a GREAT move. My parents are already planning a trip out here! YEAH!!!!!!

New Time Zone

   It is it, we are here. Not our furniture or my car, but M, J and I are. It's been a tough week. I like to be in my safe realm, and having to go out of it has been hard. I guess I'll bring my blog up to date.
   Last week when the moving truck pulled up and 4 guys jumped out I thought to myself at that very moment 'It's really happening'. There was no turning back. J's new company went above and beyond to make sure everything happened as smoothly as possible. I received a call from the HR Manager in Long Beach to see how I was doing with the big move. How nice! The guys that came and packed were great. They were patient with M running around, being on the loading ramp, and in the truck. That helped me too! On Thursday I spent the time with S who had become more than a best friend, like a sister to me. Yes I can make friends easy, but to have everything that we did in common, plus for her to be there when I wasn't feeling good I may not find that again. The guy who came and got my car was the same guy who picked up J's car the week before. So it was real laided back. When the guys finally left with all of my belongings in Friday afternoon we hugged it out. I mean they were just THE nicest. My final night was spent with S again, we stayed the night at her house so that she could take us to the airport in the morning. Our other neighbor came over and we watched TV. We did not talk about me leaving the entire night. In the morning S's daughter came down and said "Miss Ali the sun is up". But all that that meant was that I was in my final hours of being in the East Coast. We all got in the car and headed to the airport. We talked about everything be me leaving. We finally arrived at the airport and my eyes were welling up in tears. We  must have hugged then hugged a couple more times.
   Now I was feeling good physically, but stressed that being alone on the plane with M for 5 hours was going to be tough. We were able to get seats 8A and 8B. The guy in 8C was already sitting down. So we scooted over for the longest flight EVER!!! Started out good and then 'I have to go to the bathroom, I have to go to the bathroom', every 45 minutes for 5 HOURS!!!!!!!!!!!!! Now the poor guys sitting next to us was flying home to Vegas from NJ. He has lost his mom and was pretty upset the whole flight. I thought we were prepared, we had snacks, games, her MP3 player. She choose the bathroom game and I spy. I was so tired I wanted to rest, but she wanted to play Look at how the ice can go through the straw. It didn't help that the pilot kept giving us the countdown. 4 1/2 hours, 4 hours, 3 1/2 hours....Finally we are in the last stretch and 15 minutes before we land she falls asleep! Are you kidding me?!? I was done, I wanted to just get off of the dumb plane.
   J met us and by this time I was starting to feel like crap. My head was pounding. It was hot but without the humidity it was nothing. The Hotel and Casino he had been staying at was not to far down the road. But STOP the car, Coach Factory Outlet? We stopped in and then went to the new house. It's a cute neighborhood, very clean and I loved it. It looks huge inside. We'll see once our stuff gets here. Finally we went back to the hotel. All within a 15 miles radius. The room was nice, but confining. M and I made the most of it by swimming and playing at the arcade. By Monday night I wanted to get out of there. I need to have a place for Madison to run around and play in without driving me crazy. On Monday all of the utilities were to get turned on. J and I had talked about it and we went to the store and got stuff so that we could stay there as of Tuesday .  
    I'm not finished with the story...just too tired.

T Minus 3

    This will be my last blog for a couple of days. I'm getting ready for the packers to come tomorrow and then the movers on Friday. I shall soon be back with J, finally!
    Yesterday I felt bad. I woke up and my head was aching. I had so much running around to do, but I got it all done. Today I woke up and my face is numb. It's better than than the pain. I have to pack today and plan for not having any of my things until at least the 17th. I've tried to make a million notes, but I know I'm going to forget something. Hopefully I won't even notice. LOL!
    Last night I got a call from a credit card company. I have never been late and they called to remind me that I missed my payment. J and I had done all of the bills before the 1st of the month. I used to do it all on my own, but I have made so many mistakes over that past months that I need help. I wrote it in the checkbook, on my bills worksheet, and on the statement that it was paid. But I must have forgotten to click on the final button. Thank goodness they called. It makes me feel so dumb. How could I do this. I was always right on the exact penny!! J always is supportive and tells me that everything will be ok. It's not a hardship but just the fact that I made the mistake. I look everywhere and am convinced that I did something. My mind is convinced of what I believe I've done. How can you argue that?
    I have over 400 people that choose to keep up with I write. It's amazing, and I hope this helps someone going through a similar situation.
    Until Vegas...

A Couple More Days

   I'm in the final stretch...Before it seemed as if it was all moving so fast and now it's inching along. Everything that I have to do is a bunch of little stuff, go here, drop this off, pick this up. Since the guy from the moving company came last week and changed the dates they won't start until Thursday.
   On Monday I got the lab results back and I'm barely back in the green with my vitamin d, I'm surprised. I really thought with all of the sun and the pills I would be good. Then my cholesterol went up. It's quite high, but with the pills it doesn't help. I admit my diet is bad and I need to work on it. Soon!!! I need to go and pick up the results from my last MRI to take with me. So that's something I have to do today. Then I need to start calling and making some appointments in Vegas with new doctors. I can't wait to see what the new elements change how I feel. I'm thinking positive so that's the direction I am setting myself up for.

Without J

   I have been waking up during the night in pain. Throughout day the pain is handled by Advil. Today I seemed to have more numbing on my left side. I have alot to still get done but I do not have the choice to be in pain. I have got to get stuff done.  It  J's first day. I can honestly say that I am too tired to write tonight.

Hot, Hot, Hot!!!

   "This humidity is killing me!"  I want to scream from the roof tops. How the freaking, frick is anyone supposed to deal with this? Well I will soon to be off to higher altitude and lower humidity. And everything is moving, literally moving really fast. Tuesday morning started off as usual. The nurse from Dr. K.G.'s office calling me. She said that she called in a couple of new prescriptions to the pharmacy. But again I need another blood test. Half awake I jumped in the shower, then M and I went to pick up the lab slip from the doctors office. Once again we headed off to the lab. Okay, NOW I am a regular. Then to the pharmacy. The weather has made my head hurt more often again. If I expand my lungs, I can feel the pain in my ear and head. My left molars have been throbbing since I've gotten my teeth cleaned. Tuesday morning I woke up around 4am and felt so sick. Why was I feeling this way? Did I get too hot on Memorial Day? Is is the medication? Is it my head? This drives me crazy, and I hate feeling bad, but I guess doesn't everyone?
   J is flying away this Sunday. I've told my friends and neighbors that I'm theirs for a week. I'm stressed and I know that doesn't help the pain. The movers will be here next Wednesday and have us packed and loaded by Friday. Wow! My Delaware experience is almost over...I will take everything I have gained from it. The good and the bad. I am excited that I am moving to the very place that is mine and J's. I do not like flying and 5 1/2 hours, I feel nervous with just that. I'm already setting myself up for a bad flight. I have to stay calm and remember that if I don't I will be in more pain.