Oh my gosh, I am so tired but I did a lot today!

Got up late this morning and had to scramble to get all the supplies for Keri's babyshower. Got there just in the nick of time and it was wonderful! Food was incredible and Muriel did a fantastic job decorating. Had lots of fun painting onesies and dang we have some super creative girls in our group! I hope Keri got most of the stuff she needed, seems like she got a lot. By the end I was wobbly on my feet but came home and managed to force Mark to go to the commisary even though he thought I should lay down for awhile instead. For some reason grocery shopping is a big deal for me. I like to get the stuff I want and use and even though Mark offered to do it I knew exactly what I wanted and I wanted to be the one to get it. It was a huge help to have him there though, especially with Alynna. Ran into Ross and Andrea which was nice. She is due with her third boy soon and looks fantastic! They have been so nice and helpful and I know Mark likes working with Ross. Also ran into Richelle and her family. Talked for a minute but had to shut her up so Mark wouldn't realize how shaky I was :) It was so nice to see everyone today! Tomorrow I am gonna go running around with a new friend to show her around Misawa and I am excited. I think stuff like that is so much fun and I am looking forward to hitting the 100 Yen store to get some stuff for my Mom since her Birthday is tomorrow. She will be getting her presents late but hopefully I can send her some cool stuff. I am hoping Renee will be up for Ramen, I want some gouza! I am exhausted and with all the walking around my hips are screaming but at least I got a lot done today. I always feel better, even when I am hurting, if I get a lot done during the day. Got to see my friends, my fridge is stocked, all my bills are paid, and I am ready to crash for a few hours. I have a feeling I will be up and down all night but it was worth it. I am looking forward to meeting with Maj Wanker (feel a little sorry for his name :).) He is one of the hospital directors and between meeting with him and the help we are getting from Mark's flight I am really hoping for orders soon. I am switching meds so hopefully that will provide some relief in the meantime. It has already been six weeks so I am really thinking that we should hear something soon.

Tired and achy but it has been a productive day.

Didn't get a lot of sleep last night. Alynna and I are on weird schedules so that doesn't help. Was up and down all night with her and felt so bad about cancelling plans with a new friend this morning but I was actually able to lay down and sleep from about nine until around two. Had to get up and get ready for Alynna's dentist appointment. Went as well as it could I suppose but I am afraid she will have some of the same problems with her teeth that Mark does. Ran down and got blood drawn and picked up a prescription in just the nick of time. Ran to the BX which was madness. Went a little crazy getting Keri stuff for her baby shower tomorrow but I hope she likes it (all :).) Got Gavin's hair cut and have a feeling we are going to start having some battles there. Let him keep it longer in the front but made him go short in the back and around the ears. Paid Mark's softbank bill. Went by and got junk food for the kiddos and ate for the first time in awhile. My stomach isn't too sure about that decision. Came home, Mark got off work early. Was lucky for me because I was able to run to the Bunny Store with my neighbor and grab some more baby stuff. Now I am at home, laying on clean sheets with no plans to move until I have to get up tomorrow morning. Honestly, I am worn down and I have lots of plans for this weekend so I hope I can stay on my feet and keep running. Kids are both being bratty and Mark seems a little distant but I am hoping it is just because it was a long night and day for everyone. After grabbing stuff for drinks and trying to help decorate for the babyshower am gonna come home and try to hit the commisary though I am sure it will be insanity. Sunday I am gonna take a friend running around Misawa just to show her around a bit. Then I plan sitting on my butt recovering until I have the meeting with the hospital director on Monday. Jeez, that doesn't seem like that much but I know by Sunday evening I am gonna be useless.

Feeling pretty good about the direction of things today. Still sick of waiting for orders...

Met with both my doctor and patient advocacy today. I will be meeting with one of the hospital directors on Monday to discuss my concerns. I am glad that there will finally be some resolution to that. When I saw my doctor we decided to try to switch out my Gabapentin to Lyrica. I will be weaning off my Gabapentin and I am a little worried about that making me feel worse but I am really hoping Lyrica will help my overall level of pain. I am sore and achy today but a long nap with Alynna helped a little. We are still waiting for a response from the EFMP program but one of Marks superiors has written a few emails that have become more and more strongly worded. He is asking where we are in the process and he has access and authority to talk to program supervisors that we don't. Still sick of waiting and still sick of hurting but I am really hoping we get some answers soon. I also spoke to my doctor about getting a wheel chair to use so we can go different places as a family without the horrendous crash I usually have after I am up walking around for a long time. She said that she would look into it and get back to me. If I can get a wheel chair maybe we can do more family stuff that will help pass the time until we leave. I am excited about getting home and seeing everyone though I am going to miss the friends I have had here tremendously! Even if our time here was cut short I have had the opportunity to experience things that a lot of Americans never will. There will be things I take home from this experience that have changed the way I look at things from a world and cultural perspective that you could never put a price tag on. I am feeling pretty positive about the future and hoping that some of the things I have done today will help us in this process.

Another day, waiting...

Alynna got up at 4:30am which means so did I :) I didn't get much sleep but other than being tired and achy I was up and down anyway. Mark got up around 9 and I was able to lay back down. Now it is 1 and I am up again. I am hurting but I just took my meds and I am hoping they help. It is already hot as hell and I have a fan pointed right at me. Things today are as well as they can be I guess. I am still just sick of waiting. I have an appointment with my doctor tomorrow and I had an appointment with my therapist yesterday. They give you these forms to fill out when you get there and one of the questions was do you feel suicidal. I marked yes, in the lowest way possible. I told my therapist that I don't want to kill myself sometimes I just want to die. Especially after my migraine and begging Mark to take me to the ER and him telling me that they wouldn't do anything. He was right, they wouldn't have. I don't think that it is right that I live in pain. I am not asking for narcotics but it just doesn't seem fair. I am a little worried about my doctor appointment. After what Dr. Bowes (prick) said I have a feeling she is going to want to change my meds again. Right now I am taking a drug for panic attacks for my pain. They do help slow down my escalation of pain but then by the time they wear off I am in full blown pain, and what is my option? To take another pill? I want to talk to her about Lyrica and see if I that doesn't help me. My frustration is that they just don't want to deal with me anymore. I have a 20 minute appointment slot and the first five minutes she spends getting her computer up and running. The next fifteen she spends looking online and through a book to determine drug interactions to see what else she can give me. I know she doesn't have any idea what to do with me. It isn't like Dr. Bowes who just thinks I am melodramatic, I think she really wants to help, she just doesn't know how. I am going to get off here and call paitent advocacy again to see what is going on with my concern about Dr. Bowes. He is such a self rightous prick, and after all he has a medical degree and I am just some uninformed idiot so I don't know what I expect.
I talked to a friend recently and she reminded me how dismissive I used to be about both Facebook and blogs. I use to think that only sefl-absorbed assholes would think anyone cared about them enough to use them. I love facebook! I have been able to play catch up with people I thought I would never hear from again and it has been nice learning where they are in their lives. This blog isn't about garnering sympathy and I don't think everyone gives a shit. This is more like a journal that I decided to make public. I hope it helps people understand where I am in my life. Maybe someone from one of my forum groups can take comfort in the idea that they are not facing this daily struggle alone.

Complicated Migraine

So after everything this afternoon, I wasn't feeling great but I wasn't in horrible shape either. I laid down on the couch to nap with Alynna and the phone rang. By the time I got to it my vision was blurry and it felt like someone was crushing my skull. It was my girlfriend Amanda who wanted to drop some stuff off. Honestly the exact context of the conversation is a little fuzzy to me but I did ask her to come over. Next thing I know I am in the bathroom throwing up. When Amanda got here I was having a really hard time walking or talking but I did manage to get her to call Mark. I wanted Mark to call the ambulance because I felt like I was dying. Everything hurt, my head, my body, any kind of sensation made me start to vomit. At this point it was just dry heaves and bile so at least I wasn't making a mess. Mark did manage to get me picked up off the floor and babystepped me up the stairs to bed. I took a Klonopin and laid here for awhile hoping for death. Fibro hurts, this kills. Finally the Klonopin helped me get to sleep and I slept for awhile. Now I am up and can't get back to sleep. My head is still hurting, though not near as bad, and my body aches everywhere. Obviously sitting up in bed writing about this isn't helping anything but I am getting leg spasms when I lay down so at least it is something to do. I am sorry Amanda and Mark, I know I ask a lot of you.

Blah, up and down, up and down

Today was well, today. I got to see a few friends and take the kiddos swimming which was nice. I didn't feel great when I got up today and the water kind of wore me out even though I didn't really do anything but walk around with Alynna. Gavin was upset because there weren't enough goggles to go around and sat and pouted the last hour. We had to talk about that when we got home about having fun just because your friends are but I wonder what kind of example I am giving him. Fuck, I don't even know if anyone is reading my bullshit anymore. It is always the same. I always hurt. I talked to Mark today about wanting to act like we were friends every now and then instead of both of us being absorbed in whatever is going on. I really don't even know what to say. I am tired of waiting. I think I might not be friends with a friend anymore. I don't know how it happened. We used to spend time together all the time but now we never see each other and while I miss her I am not sure the feeling is mutual. I thought we had fun together but maybe she is just sick of my crap. Everyone has their own thing going on and I understand that but I am lonely. A co-worker of Marks wife is going to start coming over. I think she is kinda in the same place. Her husband has medical problems and I think she feels isolated too. It is difficult to understand what chronic pain and medical problems do to a person and their family unless you are experiencing it. I am on support groups online but honestly I am a social people person and I miss people. I miss my job, even if it was just because I got to talk to people and feel like I was accomplishing something. Now dishes or practicing ABC's are accomplishments. It just isn't the same. I feel like I am just floating through some kind of abyss with no beginning or end. No direction, no clear destination in sight. Just floating. I always hurt, the pain is always there. My doctors either don't know what to do about it or they just don't give a shit and are looking forward to me being someone else's problem. I know everything that can be done is but right now where does that leave me?

Up late and slept the day away.

Feeling a little pooish today. I couldn't sleep last night so I ended up taking a pill and it knocked me out for most of the day. Woke up stiff and sore. Took my meds and they helped my energy but I am still kinda hobbling around, okay, I'm lying, I am mostly laying in bed. Sucks that I missed out on the festival this weekend but honestly I think I just sort of missed the whole weekend. We haven't done a damn thing. I suppose that could be considered a good thing but I don't really feel great and you would think that if I took it easy all weekend I would be feeling better. I am a little scared. Mark has started to have problems that are similar to the same way my own started. What if it is something in this house? Or just here in Japan? I can't tell you how much I want orders! On another note a friend of mine was hospitalized this weekend due to her MS and there is very little they have been able to do and they are sending her home. As much as my own condition worries and bothers me I am concerned for her and hope she gets to feeling better soon.