Saturday, July 31, 2010

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.

Friday, July 30, 2010

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.

Thursday, July 29, 2010

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.

Wednesday, July 28, 2010

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.

Tuesday, July 27, 2010

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.

Monday, July 26, 2010

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?

Sunday, July 25, 2010

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.

Saturday, July 24, 2010

Started out early and I figure a nap will be involved somewhere but it has been a good day.

Alynna and I stayed busy last night until around 8pm then she passed out. My husband got home a little before that with a migraine so I pretty much just left him alone in our room with the promise to help if he needed anything. Gavin stayed over at a friends house and they slept outside. He got home a few minutes ago and looks dead tired. Alynna finished her nap around 1:30 am and woke me up. I had laid down on my sons bed. We have been up since then and been pretty productive. We made breakfast. We had banana pancakes, bacon, and scrambled eggs. I left the kitchen for Mark but left everything soaking and the counters clean so I don't feel too bad. Alynna and I practiced her ABC's on the computer and read books all morning. She finally crashed out on the floor about an hour ago. After taking my morning meds my energy level is high but I don't actually feel motivated to do anything with it. This heat is wilting me pretty quickly. I think I am just gonna lay about in bed watching movies and hopefully eventually taking a nap. I am hoping when I get up and about I can get some of the house picked up but right now I am just enjoying laying here. Don't get me wrong, my body aches and I am shaky as always but so far the day/morning/night has been good. I hope this feeling of "yeah, okay, whatever..." continues.

Friday, July 23, 2010

Last post I was in full on poor me whiny bitch mode!

Please excuse my recent pity party. I am frustrated by what is going on and the waiting is making me nuts, but it certainly isn't killing me. I am going to attach a link about the myths of fibromyalgia done by the Mayo Clinic and then a quote I think is appropriate.
"Many of the people who come to our fibromyalgia clinic are perfectionists who have very high expectations for themselves; likewise they can't adjust to more realistic expectations after they develop fibromyalgia symptoms. These people have difficulty learning to relax. They may push through the pain and keep doing activities to the point they crash and burn and need extra time to recover."
Throughout my life I have been a lazy perfectionist. Sounds funny, but I have basically expected things to go my way simply because I show up and do my best to make them that way. Unfortunately right now I can't do that. I am trying to learn to live within my limitations but it is difficult to go day by day feeling like I have accomplished so little. Really, who cares if dishes got done if the bathroom floor needs to be scrubbed and laundry is still piling up. I try to do these projects that say...Look, I'm not useless. Then I end up in bed or on the couch in pain and really what is the point. Mark and I talked more last night when he got home and his point of view is that after being married so long I have already proven what kind of person I am. I have worked two jobs, several times, I have made personal sacrifices so my family could be healthy, I have kept a clean house and a (mostly) straight bank book. I have already shown that I am not the kind of person that lets things get in their way. Anytime we have been faced with a shitty situation my response has always been...Alright, how are we gonna deal with this. That is the mindset I am trying to keep now. I get really discouraged when I imagine living the rest of my life this way. I am hopeful that something, be it simply going back to the states, getting new doctors, trying new meds, something is going to help me get back to a point where I feel like I am accomplishing something with my life. Maybe it is college, maybe working part time, who knows maybe one day I will be able to work full time again and go to college. All I know is sitting on my ass moaning about how hard it is right now does not pay a proper respect to all I have left in me.

Thursday, July 22, 2010

Good day but damn I am tired!

Got up this morning after sleeping for quite awhile. Was slow and achy at first but started feeling better as I kinda laid about. Amanda called and said that her husband, who is awaiting deployment, was off running around and that if she wanted me to come over to help me organize and clean. Talk about a huge help! She came over and folded my laundry (my eight loads of laundry.) I would like to say that I helped but I think I mostly just stood there bitching about my doctor and trying to figure out if I have made the right decision. She brought all of the laundry upstairs and we got it put away. THEN, we tackled my closet which looked like a tornado had hit it. A friend of hers is having a garage sale soon so I gave her like three bags of random stuff that we don't wear or use anymore. I felt bad for her, I kept trying to tell her that it was all clean and in decent condition but I was really loading her up. We got my closet done which was such a huge relief! I have taken a fair amount of meds today and am dying out quick but I am making the kids pasta for dinner and I am hoping Mark can come home too. I have started spliting up my fat burner and acai cleanser so instead of taking two pills of both at once I am taking one pill in the morning and one in the afternoon of both. It is helping my energy level. During dinner I kept getting vertigo and it finally got bad enough to make me get sick. After laying down for a few minutes with one foot on the floor I was feeling a little better. I was on the phone with Stephanie when it happened and I felt so stupid. She had to talk to my son until I could finish throwing up and get the energy to get up off the floor. Tell you the truth, dinner was the last thing I could do, I took it out of the food and laid down. I am finished. My body is aching, my head hurts, and my co-ordination is shot. Mark was pissed that I had overdone it again but it felt so good to get stuff done. I know he is mad at me but one part of me is feeling so useless just sitting here, and the other part of me just can't get what that fucking doctor said. Maybe if I do more everyday I will develop some kind of tolerence to the pain. The reality, and I hate to say that my husband is right here, is that I am driving my body into the ground. I can't stress enough how hard I am trying or how much my body is hurting. My husband will be going to the conference with the doctor with me. If that is what paitent advocacy decides to do seeing as how I haven't heard back from them anyway. Bringing my husband made me feel more secure because it was like bring a bulldog on a leash. I don't think he is going to let me hold the leash anymore. I really do want to be active and stay busy but my body hurts so fucking bad and it isn't like I am sitting on my ass focusing on my pain. I haven't talked to a few of my friends in awhile and I feel like maybe they are just sick of listening to me whine. I don't know. Everyone has their own lives and the things that keep them busy but I am feeling lonely. Stephanie has been awesome about calling me but, I know I have said it before, I am sure she is tired of hearing me bitch. My husband doesn't even listen anymore, as far as he is concerned if I am going to push myself then I should expect to feel this way. I just feel so lost. I have nothing to focus on so maybe if I pick one thing a day to do it will help the time go by faster. I hate this feeling of uselessness. One day I get up and do something and then I pay for it. Why can't I just be normal? My house looks so much better without all the laundry but I have no energy to clean it. AHHHHHHHHHHHHH I fucking hate this. I am laying here hurting trying to get Alynna to watch tv but everytime she moves around on the bed my body cries a little. Gavin is going to Kenji World tomorrow and he is trying to get everything ready but I have no energy to help him. I have to be up at 7 to take him to the bus. Right now I am just focusing on getting through this minute, this hour. My husband has said several times that I should stop letting that doctor get in my head but I just can't.
This was long and repetitive and I am sick of hearing myself talk about how much my body hurts so I can only imagine how anyone else reading this feels. For all those out there that actually listen to my bullshit rambling thank you. I swear I really am trying.

Wednesday, July 21, 2010

Talked to paitent advocacy.

By nature I am not a confrontational person. Don't get me wrong I can be a total bitch when it is called for. In general confrontation ultimately feels like a lack of diplomacy. That said, this time I don't think I am the one lacking diplomacy. After my recent doctors appointment I have really struggled. Could I try harder? Am I doing enough? Is this just in my head? I just don't know anymore. I do try, I do the best I can, but my body just gives out. I got up the nerve to gather some information from reputable sources about both Fibromyalgia and Myasthenia Gravis. I then wrote a three page letter outlining our conversation and what specifically I felt about it that was inappropriate. I went down to patient advocacy but the person I needed to speak to was not available. I left my name and number. I came home and was getting Alynna's pool blown up so we could sit outside in the sun and she could play. I got a phone call from a PA rep and explained what had happened and how frustrated I was. After listening to my concerns she said that she would discuss it with her supervisor. I explained the package I had put together, including the research. I asked her if she would like to me to email my research and letter to her and she said that she really didn't need the research because this really wasn't about my medical problems. This was about what I felt he did that was inappropriate. She asked me what I would like to have happen, if I just wanted them to talk to him, if I wanted to file a formal complaint, if I wanted a call back or what. I told her that I really wasn't sure, that I wasn't trying to get him into trouble, that I just feel like he was extremely insensitive. I finally asked her if we could set up an appointment with me, a patient advocate, and him so we could discuss some of the things said that I felt were so problematic. Honestly just discussing the appointment gave me a headache and made my body start hurting worse. Stress kills me. I don't want to talk to this guy again, he really upset me and I know he will try to justify everything he said. He will say the reason he told me how much they have spent on testing was to illustrate that they have tried everything they could. Doesn't change the fact that it felt like he was trying to put some kind of price tag on my health. I am sure he will say the reason he suggested more anti-depressants is because I am at the point where I need Klonopin. That is for the anxiety associated with the escalation of my pain, which is still not under control. These are just a few examples of what I know I will be facing and yet I invited this. Am I an idiot to go through this again? I know I will have to defend my feelings which is one of the most difficult things to do. He is going to walk in there with his years of education and experience and I just know I am going to be reliving this over and over again. I have to discuss and defend all the things that upset me. Honestly, this entire experience has been almost as traumatic as the original appointment.
So I got off the phone, finished blowing up Alynna's pool and started filling it up. While I was waiting Mark came home. We discussed what had happened and I asked him what he thought. He was kind of ambivalent. When I asked him what he thought about it for the 8th time he finally turned to me and asked what response exactly I was expecting. I told him that I just needed someone to tell me that I was doing the right thing. He said that of course I was...with his back to me. I don't know how he really feels about it. Am I making a big deal out of nothing? Does he think I am wasting my time, or his? Of course, he finally said that he would have just filed the complaint and burned his house down. That he was just and arrogant asshole that thought he knew it all based on seeing me for an hour. I wish that made me feel more comfortable with my decision. Mark had to leave to go to PT and Alynna's pool was filled so I took her outside and let her play in the water while I sat in the sun. My neighbor came over with her girls and they all played for awhile while we visited. Alynna had a blast and it was nice to sit in the sun. We were getting ready to clean up and go inside to shower when Mark came home. We got everything drained and put away and honestly I was just exhausted. I came inside thinking Alynna would crash with me but I couldn't get her to lay down so I finally called Gavin in and asked him to watch her. I can't believe how much this whole thing has stressed me out. I slept for a few hours but it wasn't very restful. My body is hurting and I feel like crap. I am still waiting on fucking orders, which might take for fucking ever, I am confronting the only doctor that can perform the botox treatments, we are starting to miss my income, my husband has been oddly distant, and both my kids have had attitude problems. Fuck, I just want to crawl into bed and pull the covers over my head.

Tuesday, July 20, 2010

This sucks!

Last night my sleep was really broken. I was out by 2, up at 6, back out at a little after 10 and then had to be up for a doctors appointment with my therapist at 11:45. I woke up tired, bitchy, sore, basically everything I was feeling last night. It was like I didn't feel any better. I went to my doctors appointment in a pretty miserable mood. I told her that on the positive we shouldn't be waiting to much longer for our orders and that my husband and I had been communicating better. On the negative I started to tell her about my appointment with Dr Bowes and all the things he had said. Honestly, it just brought back all of the feelings I felt when I left that appointment. It made me doubt myself all over again. Between that and the fact that my body was hurting I cried for the last half hour. I sucked it up, and made the decision to write a formal complaint against Dr. Bowes. I left feeling like at least that was something I could focus on and deal with, even if I felt a little overwhelmed with life in general. On my way out the person that handles the EFMP paperwork was there and so I asked her about our status and if there was anything I could do, any letters or emails I could write, anything. She said no, that she wasn't actually expecting a response anytime soon that it typically took more like 60 days to get them processed but it could take longer. First they had said 48-72 hours then next week, next week, now we are at a month and even the EFMP website says 4-6 weeks. So we have no idea when we will be leaving. I have no idea when I will be able to see competent doctors that have any real knowledge of my condition, whatever it is. I was so looking forward to just getting out of here and having the chance to start from ground zero with doctors that knew what tests to run and what medications could be the most effective to help me. In addition what changes I needed to make personally that would be the most helpful. I am so tired of waiting. I put on this mask for my friends and family about how I am happy and thinking towards the positive but when I am alone or when I talk to my therapist that mask comes off and the truth comes out. My body hurts, every second of every day, and I am just exhausted. Tired of waiting for decent doctors, tired of waiting to find out where we are going, tired of pretending to be okay when I am just not. I don't want to play the victim or have people get tired of hearing me say how miserable I am. I am just not that kind of person, even when things have been at their worst I have always tried to present a positive front. By the time I left that office I just couldn't do it anymore. I came home and went straight upstairs to lay down hoping my family would just leave me alone until I could get myself under control. Of course that didn't happen. Mark came upstairs and just wouldn't listen when I asked him to give me a few minutes. I tried to tell him how I felt and he just started blaming people. My therapist because I come home feeling like this, I can be completely honest with her, of course it is depressing but at least it feels good to tell someone. My doctors because they haven't helped me. His flight because they didn't sign off on the paperwork. The EFMP program because they were obviously just lazy and didn't care. Misawa because he thinks something here is making me ill. I just started crying. He wasn't hearing me. He didn't get that it didn't matter where it came from, I am just so exhausted of trying to pretend everything is okay. It's not. I am tired of pretending it doesn't hurt to pick up my daughter or walk around the store. I am tired of living in a messy house because I don't have the energy to clean it up. I am tired of going to see doctors that just kind of shrug their shoulders because they don't know what to do. I am just so tired of it all. I love my friends and they are wonderful but they all have their own struggles and obstacles, they don't need to carry mine. Even the other day when I felt okay I still hurt, it is endless. It never stops. I keep trying to hold onto hope that things will get better when we get back to the states but I just don't know. Right now I don't know anything except that I am hurting and exhausted. I spoke to Mark a little while ago on the phone and I think he actually understood where I was coming from. We had a good talk and I think he had calmed down enough to really get what I was trying to say. He told me that after twelve years of marraige he knew when I was faking it. That it was just one more thing that was making him feel like he wasn't doing enough. I explained to him that none of this was his fault and that I didn't expect him to do anything he wasn't already doing. I hate that he feels like he has failed in someway too. That is what really makes me crazy when I think about it. I have a good life. Good marraige, great kids, terrific friends. But my body is keeping kme from enjoying any of it. I am so tired of trying to pretend like I can enjoy any of the great fortunes I have in my life because I can't seem to get past this pain to take any joy in any of it.

Stephanie I am sorry if you are reading this and feel upset that I am not being fully honest with how awful I feel. I know that you would carry the burdens of the world if people would let you, matter of fact I think you should be nicknamed Atlas. I get sick of hearing myself say the same things over and over again, I can't imagine how you feel. You are one of the most incredible people that I have ever met, but you don't deserve to have all this dumped on your shoulders. It certainly isn't like you don't have enough to deal with on your own. Two more paychecks Babe.

Monday, July 19, 2010

Today is a good day, yeah, really...

So I got next to no sleep last night, I was up until 8:30 and then back up by 11:00. I am a little woozy but at least I am up and about and that is something right. I litterally have mounds of laundry that need to be folded but have NO motivation to do it. I did do the dishes yesterday and after a kool-aid accident mopped part of the kitchen but it was mostly a lazy day. Hung out with the fam and watched movies in the master bedroom last night. I think we were all a little wilted from the heat, but maybe that is part of why I am feeling better. I haven't had a good appetite for weeks but drinking all this water has completely killed it. One part of me hopes I am losing weight, the other part of me desperately wants my sodas back. I snuck two yesterday and the caffiene almost killed me. I am feeling pretty good, I know our orders have to be coming soon, the water has helped and I think so has the GoChi, Acai, and fat burner. I am planning on going to the dog park here in just a little bit with a friend I haven't seen in awhile and I am excited. I am still sore and achy and a little stiff but I really am having a good day and I am going to enjoy every second I can.

UPDATE: So before leaving I had to take a quick shower and get Alynna scrubbed off too. I used cool water hoping that it would help me a bit. I don't know what did it but between the shower and trying to put on my make-up I kept getting vertigo. It would come in spurts, sometimes it only lasted for a few seconds and sometimes a few minutes. I had decided to go to the dog park and then the BX and dammit I was going to go. My body still felt okay for the most part, my shoulders hurt from trying to wash my hair and then pull it back but other than being a little shaky I was okay. Amy and Shino, who are the sweetest, cme over to hlp me finsih getting ready and give me some time to settle. I was still a little shaky but the vertigo was coming for less time and for shorter periods. It was so much fun to watch the dogs run around and there is a small park attached. Shino was kind enough to watch the puppies play while Amy and I took Alynna over to the apark I was getting worse so I mostly sat and watched Amy play with Alynna. It was getting hot so I had decided to take Jiki home, cool her off and try to let myself settle a bit. The vertigo was still coming and going and I was shaky, my legs were hurting but sitting and talking to a neighbor with the windows down and the cool breeze blowing on my face helped a bit. I got to the store and was weak and getting worse but I was determined to finish my plans for the day. I got in the BX and could not remember why I had come. I got a few small things and headed out. By then the vertigo was back full time and I struggled to get Alynna out of the cart. I ran to the post office, which only took a second then I came home. Alynna was crashed out when we got home. getting her out and upstairs was a tricky but we both laid down and I took an hour and a half nap. Alynna is still crashed out. I am still feeling really shaky and the vertigo is back full force. Typing this had been tricky :) I am still determined to have a positive outlook but I think my laundry is going to continue to sit there for awhile. I am hoping sitting my lazy ass on the computer amd possibly doing some more yoga will help. We can't wait for ever for orders right???

Sunday, July 18, 2010

Sleepy and feeling lazy today.

Got next to no sleep last night but after a two hour nap I am up and about. Mark and I talked about trying to go somewhere today but I think the last few days have caught up with me. I am not feeling bad exactly, just worn out and a little achy. Had lots of fun at Lorah's Bday party yesterday though all the noise and the sun coupled with a trip to the still under construction BX did me in. I came home and napped for a few hours which probably explains why I couldn't go to bed last night. The water really does seem to be helping and I stopped taking my tramazadone and indocin since I never really felt like they did anything anyway. I am going to see my therapist on the 20th and talk to her about the way Dr Bowes, yeah, I said his name, he's lucky I didn't just say "the prick", talked to me and how unprofessional I felt his attitude was. Maybe see what her perspective is and if she feels like it would be a good idea to file a formal complaint. We are still waiting on orders, Mark just ran downstairs to check but I am not hopeful. If they aren't there yet then we have to wait until Tuesday to check again. I really am starting to feel like we will be here forever. As horrible as it is to admit I don't even care about all the things I still want to see and do. I just want to get home, see family, get settled at our new base and hopefully buy a house. As much as the regimen I am on has made me feel better it hasn't been a cure all and I am afraid Mark is still looking for that magic thing that is going to fix everything and I still think this is gonna take some time and review from medical staff that actually have some experience with my concerns.
You know, on a side note, I took forever to sign up for Facebook or Myspace because it seemed so self involved and narcissistic. Then I finally did and I love it. Getting to talk to people I went to high school with, staying in close contact with family and friends that are far away. It's fun and it is nice to be able to celebrate or be pissed about something that happens to someone that doesn't live here. Same with blogging. I thought,"who wants to read about your pathetic life?" Then I started doing it and has actually turned out to be very cathartic. It really has helped me to sit down everyday and form my thoughts and then reading back on them see how I have done well in some areas and how I might need to take a different tack in others

Saturday, July 17, 2010

Don't know what happened between last night but I am in raging super bitch mode today

Ugh, I don't know what my problem is. Went to sleep feeling a little sore and pissy. Woke up every hour on the hour on the hour either needing to pee or having my kid laying on top of me. Got up exhausted and feeling seriously bitchy and hurting. I am trying so hard to get out of my funk,as I have a bday party to go to in about an hour and don't want to scare any of the kids. Yesterday I felt so good, running around. It wasn't pain free but it felt like I was taking some of my life back. Thia morning I have thrown everyone out of my bedroom, including the dog and am just thinking mean hateful thoughts. Not about anyone in particular just generally mean, unjustified, poor me thoughts. I hate that I have days like this and worse I never know when they are coming. I don't care of it is a stupid bitchy and pointless thing to think. I fucking hate that I have days like this.
Update. I slept for another hour and woke up feeling better. I am headed with the fam to a birthday party that is guarenteed to rock so that is probably helping. Man I woke up this morning seriously ready to bitchslap someone for no reason except it might have made me feel better. Hoping that feeling doesn't come back.

Friday, July 16, 2010

Started off slow this morning but I am getting a lot done.

Okay first, fuck my doctor from yesterday. I am doing what I can to make my situation better and I don't feel this way because I am depressed. Mark and I have both started drinking bottles of unflourinated water by the truck load and I am doing a system cleanse with Acai and a fat burner. I got up this morning feeling sore and stiff and bitchy. I got up and got the kiddos ready and Mark and I went to the grocery store. I am about to leave to go grocery shopping off base with a friend for produce and if the kiddos are good to the 100Yen store. Feels great to get out and about even if I am still feeling a little stiff and sore. Now I just need to spend some time with Stephanie, Muriel, and Keri and life will be good. I am trying to make plans to go see Komaki Onsen koi and some other things with Heather. Richelle is the best! She called me out of the blue recently to ask if I wanted her to take the kiddos for a few hours. I ended up turning her down because my day was so crappy but just the fact she asked was so awesome. That is who I am going shopping with and I am excited. I am determined to make more time for my friends. Mark being home until 3 can make it tricky sometimes because I like to spend time with him but I am hoping to use that time to reconnect. Then after he leaves I am gonna try to make more time to see some friends. I am still angry after my doctors appointment but I see my therapist on the 20th and I am gonna wait and get her perspective before doing anything about my doctor. I feel so scattered and it is probably coming across in this blog but I am loving getting out of the house and being a little more active.

Thursday, July 15, 2010

Today was a pretty good day, until an asshole ruined it.

I woke up a little early so I could go take care of our car insurance before my doctors appointment. I was shaky and a little weak but for the most part I felt pretty good. I finished up with the insurance place and had enough time to run to the bookstore before my doctors appointment where I found my favorite series newest book. Man, I was on a roll, I was feeling okay, I had gotten stuff done, I was up before noon, and my doctor was gonna give me botox which I had heard good things about. I get there and we start talking about me going back to the states and how I would really appreciate him adding a letter of support to my package to try to expedite it. He leans back in his chair, clasps his hands together and asks me why I think going back to the states is gonna help. First I just thought WTF? I explained that having a team of doctors that were experienced in their fields would be able to better treat my conditions. He leaned back a little farther and started to tell me that he thought my problems came from depression. They had already done about $50,000 worth of blood tests that all came back normal and that the botox we were about to use was another $1,000. My eyes just about bugged out of my head and I could feel my inner super bitch seriously starting to claw her way out. I asked him if he was basically saying that all this was in my head. He leaned forward with his "concerned face" and said no, of course not. That adjusting to a foreign country could be very difficult. I told him that yeah, it had been so hard getting my son into a great school, finding a job I loved, making some of the best friends imaginable, learning (at least conversationally) a foreign language, and being able to travel a foreign land that most people will never have or take the opportunity to. That basically, I loved it here but my body didn't. He then went onto ask why I though I felt so poorly. The inner bitch was screaming,"Aren't you the fucking doctor??" I said I didn't know that I had been researching all these different things that caused auto-immune responses. Like flouride toxicity, misotoxions, and conditions associated with my graves disease, and myastenia gravis. That I was not only trying to figure out how these conditions could be causing the problems but how I could treat them personally, without medications. He then went onto tell me that my test for myastenia gravis had come back negative. My inner bitch was seriously having a temper tantrum at this point. The testing for myastenia gravis is a test for a certain immune communicator, not having it doesn't mean I don't have the disorder and having the disorder explains a lot about my symptoms that are not unheard of but are rare in fibromyalgia. I explained to him that I was not a depressive or negative person that living the in pain the way I was forced to was what felt isolating and difficult. He tells me,"Well, you got to get out there and stay active." My response was so that I could crash for three days after? He told me that he was sure if I just made an effort to get out and do more that I would start to feel better. My response was that I try but I can't control it when my body is hurting, my head is throbbing, and my muscles are weak. He asked me if I had been trying to do the things that seemed helpful to fibro sufferers. I said yes, I do yoga for 30 minutes a day even when it was very painful, that I tried to sleep when I could, do things when I couldn't to keep myself distracted from my pain, eating healthier, and I had just started a water cleansing process with Acai. He then went onto criticizing my list of meds. Klonopin, which has been extremely helpful in helping me through my worst times, was the one he wanted me off of. Baclafor, my muscle relaxants that I believe help were another. He also discussed taking me off my indocin, which I have never felt like really helped anyway was another. Okay buddy, no problem there, and my tramazadone which is supposed to help me sleep but I don't think really helps much anyway. He suggested putting me back on Pamalor but at a higher dosage since it did obviously help me reach a deeper level of sleep, even though I quit taking it because it made me fuzzy headed and feeling heavy and clumsy. But, of course, at a higher dose my body might handle it better. Higher dose than the one that ultimately made me quit my job?? At this point my inner bitch was out and ready to let loose. THEN, he told me that he personally didn't want to change any of my meds but he would talk to my general practitioner about it. Some of these changes I have no problems with but once I get back to the states I will be seeing a team of doctors that can adjust my meds based on an entirely new approach to my pain. Why are we switching things around now?? He also recommended me seeing my mental health provider more often so she could make suggestions that might help. I have been seeing her since Nov of 2009, usually twice a month. What else exactly did he think she was going to do? She understands and agrees with me quitting my job and taking it easier. At least while that is what my body is telling me to do. At that point I just asked him to do the Botox and I would stop wasting his time. Then the whole time he was doing it he kept reiterating that fibro is a depression disorder. I just tried to stay quiet because fibro is not a depressive disorder. It starts when your body begins interpreting sensation as pain, goes onto sleeplessness or light sleep, which triggers more pain, which triggers more sleeplessness. Most depressive disorders are about brain chemistry not about auto-immune responses. What kind of fucking doctor are you? You think I haven't done my research? That I don't understand the condition I was diagnosed with. I have even been researching unknown and difficult to test for neuropathic conditions. FUCK YOU! Thankfully he shut up and finished my botox explaining how long it would take to go into effect and how long it would last. When we were finished he told me that he would write a supporting letter for my EFMP file. I hope I get it first because with the way he feels about my condition no fucking thank you. He did emphasize that more pressure might send me back to the states without my husband. That is when I finally looked at him and just let go. I told him that both of my other supporting letters had specified that going back alone was not an option, that I would need my entire families involvement and support to deal with this and hopefully start to feel better. His response was well, his flight is really what is holding all this up. ARGH, I can't make them move any faster and my husband is already planning his rampage about the lack of help he has received from them. To include taking this to the flight Commander. Basically I left feeling so much worse about this. What if it was all in my head? What if I was making it worse with all my meds. I have been trying so hard to go against my own grain and accept that this isn't my fault and that I am not doing anything wrong. He basically told me that I was depressed, not trying hard enough, and taking to many medications. Yeah, thanks prick. I left for the house pissed and at the same time feeling so unsure. I got home and just went straight to bed. A really sweet friend had offered to come get my kiddos and let them play at her house for a few hours but I called and told her not to bother. Instead tomorrow we are going to go grocery shopping off base and possibly to the 100 Yen store which always cheers me up even though I know it will wear me out. The more I think about it fuck that idiot doctor and yet I can't help but wonder....

Wednesday, July 14, 2010

Jeez, another crappy day, I amost wish these didn't need a title

Went to bed late last night pretty warn out. Had some friends over and had fun but it did wear me down a bit. Mark came home pissed off and oddly indifferent. I know he is already struggling at work again. He keeps coming to me with these different possible reasons for me being sick. Everything from floride poisoning, to an auto immune response to mold, to drinking too much soda. It isn't that I don't appreciate him trying to find a reason but now he says he wants to send me home the second we get orders and maybe getting me out of here will help me feel better. He is talking about either leaving the kids here with him or having his family fly over to help me get them back. I really like that he is thinking about me but all of those options make me feel like a fool. He also wants to get rid of several of our furniture because he is afraid it is contributing to my medical condition. I see the point but after moving how are we going to purchase a house and our new stuff? Basically, I am going to leave my husband, who is working a demanding job, to pack out our stuff and prepare everything to move? It just seems unfair that he is taking so much of this on himself. Worse, I can't do anything but let him.
Originally I was told we should hear back from our EFMP program within a week. Since then it has been next week, next week. I just called them to check our status and the girl told me not to expect an immediate response and that I probably still have some more waiting to do.
At this point I can't lie anymore or hide it. This is progressive. I spend my days trying to find the motivation to do simple things like the dishes, getting laundry folded, or just getting off my ass. My incredibly intellegent daughter spends her days watching tv and I know there is so much more I should be doing to facilitate her interests and her experiences but I shake so hard sometimes that even writing the alphabet is too much. I don't worry as much about Gavin because he has so much freedom, and lots of friends to play with. Our fabulous neighbor took him to two different beaches yesterday with her own three boys. One part of me was so excited that he got to go and experience that, another part was jealous that I wasn't the one taking him. I brought up taking some trips to close by places and my husband told me he didn't think it was a good idea since I got so easily warn down. I just want to experience as much of Japan as I can before I have to leave this beautiful country, probably forever.
I got up this morning aching really badly, especially in my hips. I still have cookies to decorate, more laundry needing to be folded, and dinner that needs to be made before my meat goes bad. I know it is repetitive to mention it but these are simple things and they seem so overwhelming. What almost makes it worse is that I have so many wonderful friends that would come and help me but they all have their own responsibilities and asking them to take care if mine makes me feel like I am taking advantage of them. I know that if I was feeling better I would make the same offer to them. I just don't want to leave them with empression of some needy and broken girl they knew that asked them to do everything for her. I want to be the one who helps, not the one who needs help. I guess it just feels like one more thing that was stolen from me. UGH! Fuck the way I feel dammit, I don't want to be this person.

Tuesday, July 13, 2010

Today has been a pretty good day but...

Last night I went to be around 12:30 with a problematic migraine. At it's worst I was really just swallowing pills in the hope that something would help. I fell asleep feeling really nauseous but luckily I was able to get ahead of it and fall asleep. I woke up several times throughout the night with pain especially in my hips and shoulders and my head was still aching. My husband slept on the couch which made me feel really guilty. I hate that he has to pay for this too. I didn't wake up until almost 3 when my husband had to go to work. I was still really sore and shaky so I took a shower with my daughter but I had to do it sitting on a stool and had a hard time getting my arms above shoulder level to wash my hair. I have been shaky all day but my husband finally did the dishes so me and my daughter made cookies. Later on we are going to decorate them. She wants to go outside so we can water my flowers but I am still a little too shaky so I keep blowing her off. Good grief I feel like I am shorting everyone I love. I wish I felt better but it is almost time to take my meds again and I am hoping they help. Hate that I feel so guilty all the time. My family deserves so much better and sometimes I wonder why they love me considering how much I am unable to do. On a positive note my wonderful neighbor took my son to a beach this morning to look for sea shells. After bringing her two youngest home for a nap they left to take another trip to a beach where the kids can really get into the water and play. She is so terrific, I wish I was more like her. Her husband is deployed yet she gets up with three boys to take care of and still does stuff with them. I can't imagine not having my husbands help, more with three busy boys to take care of. Fuck, I feel so useless.

Monday, July 12, 2010

Today, another sleepless night

So I have been in pretty severe pain the last few days and spent a fair amount of that time in bed. Because of the time difference we won't hear anything back about our orders until tomorrow but I am holding out hope that we will have an answer soon. I just brought out all the laundry that still needs to be folded, roughly five loads and cleaned out our lint trap. Now I am shaking, sweating, and exhausted. I think part of it was carrying the laundry, and part of it was just standing there cleaning the lint trap. That is right, that's all I did and I am aching like crazy. Every now and then I just think WTF? This shit isn't fair. I think for the most part I have been a good person. I donated money to Katrina and Haiti. I welcome our neighbors and invite them to stop by if they need anything. I help those that I can. I welcome everyone new to Japan with information and usually my number so they can call me if they have any questions. Why is this happening to me? I am not even 30 yet. Why is my body so broken? What could I have possibly done to deserve this? I know none of the answers to these questions really matter. I am trying to focus on the positive. I have a terrific husband and wonderfully normal children. I am still alive, this isn't terminal. Sometimes it is really hard to be grateful for all I have and not focus on how miserable I feel. I can't say it enough...This isn't me, I am not this person. I am going to lay down for a bit and try to get this under control and then I an either going to try to do dishes or fold this mountain of laundry. It hasn't been the best day but I am desperately holding onto the hope that tomorrow will be better.

Written July 1, 2010

Throughout my life I have had my fair share of struggles and strife. For the most part I think I have handled my life's difficulties with as much strength, grace, and dignity as possible. Almost a year ago I was diagnosed with Fibromyalgia. I accepted that much the way I try to accept everything. Okay, this sucks, but there are medications we can try. I can make changes in my personal life to help, and this isn't the end of the world. I can't live in pain forever, right? Honestly anymore I am not so sure that is true. For the last year I have lived with chronic pain. Anyone who has not experienced this cannot possibly understand what that truly means. Every night, when I can fall asleep, I wake up every twenty minutes to an hour because my body aches. It is this odd mixture of a ripping, crushing, grinding pain. That never fully stops. Sometimes is less severe but it is always there. The headache that never fully goes away. The back ache that is always nagging. The feeling like I have weights strapped to my body, especially my shoulders and hips, that is constantly dragging me down. To add to the insult of my bodies rebellion is that I am exhausted. I never feel fully rested. I generally wake up even more sore than when I went to bed. Everyday, day after day. I have started doing yoga, eating healthier, having someone come in and help me with house work, cut back to working part time in an office job that allows me to stay off my feet, having painful deep tissue massages that help my flexibility, and seeing a therapist to talk about my pain and to develop a vocabulary to express my pain to my family and friends in a non-threatening way. I have tried several medications, some of which have really helped, and some that have made things more difficult. I have come to the point where there is no easy answer. When I originally contacted the doctor about my pain I was sure there would be a simple fix. I am coming to the unfortunate realization that there isn't. Sometimes I wonder who that person in the mirror is. The one that has gained twenty pounds. The one that struggles to finish the dishes or climb the stairs without sweating and shaking because of the pain in her body. The one that hesitates to pick up her three year old daughter because she knows she will pay for it over the next few hours. The one who doesn't want a hug from her ten year old son because she is afraid it will hurt and he will know. Who is this person? Could she possibly be me? My nickname used to be the "I got it girl." Whatever it was, don't worry, I'll get it. Somehow this has been transformed into "can you get that for me please?" I hate this. I am not this person, I refused to believe I will feel this way for the rest of my life. What kind of life could that be? What started all this was work this afternoon. I have started a new medication that helps me reach a deeper level of sleep. I have even dreamed for the first time in months. However, this medication drags me down, it makes me tired during the day, scatters my thoughts, and I end up feeling clumsy and heavy. Like it takes even more effort to do simple things then it did when I wasn't getting as much sleep. I have an office job and I work with wonderful people, both of whom have seen me in a severe flare when my pain is at it's worst. Today as I sat counting our daily deposit my vision kept blurring and I kept losing count. My job is very simple and straightforward. I have the experience necessary to make this easy for me and yet I struggle. I could see the looks passing between my two co-workers as to how they could take it away from me and just do it so it could be submitted on time. I was so ashamed and embarrassed. They didn't say or do anything wrong I just knew that they could see me struggling and wanted to help. Dammit I don't need help, this is simple, why can't I just do it? Why can't I make it work? I did finally finish and as I was leaving to drop it off one of my co-workers asked if I wanted them to double check it. I don't know what was worse wanting to say yes and admit what an idiot I felt like or if I was offended that she would doubt me. When I returned I started filing personnel information. I caught myself twice filing something under the wrong name. Again, simple but I couldn't even do that. When I finished filing I moved onto processing the monthly tips. This requires going through our schedule and marking down who worked during a certain period and how much each shift made. I kept losing track of where I was and what I had already done. That is when I finally just laid my head down on the desk and allowed the first tear to fall. I wiped my face, straightened up, and called my therapist. I could feel this darkness sneaking through my soul and stealing all of my ambition and self-worth. My therapist was with a patient and I was told she would return my phone call. I told my co-workers that I had something I had to take care of and left. I drove to an empty parking lot and cried until I felt like I couldn't possibly shed another tear. This isn't me, I am not this person, no matter what the problem in my life I have found a way to deal with it and focus on the positive. In this situation I just can't find the positive anymore. After I came back, trying to be discreet even though everyone knew I had been crying, I cleaned up what I had been doing and put everything away. I was invited to a lunch with my two co-workers and a girl that used to work with us that I think is just wonderful. I was sure if I went I could find that will to just pretend everything was okay. They say if you fake a smile it can actually make you smile for real so it was worth a shot. Honestly, we didn't even make it out of the parking lot before the darkness returned. I couldn't focus on the conversation and even though my companions are lovely people that I was sincerely interested in I couldn't help but think about how broken I was. My person, my body, my soul, they are all broken. I couldn't seem to get past how happy they all seemed. These are my peers, my social equals. They all have struggles and problems of their own but they put a smile on their faces and make the best of everyday. This day, this time I just couldn't. I couldn't smile through my pain, the loneliness of being the only person in the group that knew how much I hurt and how hard I was trying, and how miserably I was failing. We returned to work and I left and came home. I had no intention of telling my family how unhappy I was. I planned on just saying hi, then going upstairs and crying myself into a nap. Shortly after I got home my husband brought me the phone with a worried look on his face. My therapist was on the phone. I pretty much pushed my husband out of the kitchen and shut the door. I laid my head down on my kitchen table and let it all spill out, the ugliness, the hopelessness, the anger, the frustration, and the loneliness all combined to make me feel like there was nothing left of me. Who I was, who I still want and try to be. I am going in to speak with her further in the morning and have a doctors appointment to discuss my newest medication. After getting off the phone I had to try to explain to my husband how I was feeling. You know the expression "still waters run deep?" That is an understatement of my husband. He told me that right now I should just stop working and stop pushing myself so hard. In my mind I was thinking doesn't he know that is who I am? Isn't that part of why he loves and respects me? I understand where he is coming from. Not only is he scared for me now he is afraid that because I am pushing myself I am going to do something truly irreparable. All in all, where does that leave me? How do I pass the days? Sitting in the house afraid to go out because I know it will make me sore? Or continuing on the way I have been, pretending it doesn't hurt and I can still do everything I used to? Which person do I want to be and is there an option in the middle? Right now the only thing I am sure of is that I don't have the answers. I took tomorrow off work and am going to try to do something fun with the kids this weekend but I really just don't know how I am gonna feel. Tomorrow, the day after, the week after, the month after. I just don't know.
We are a military family stationed in Japan and because they can't treat my conditions here we are anticipating new orders sending us to a base that has a pain clinic. I don't know what to think. I don't want to get my hopes up because we are giving up so much to accommodate my medical conditions. What if we get there and they can't help me either? What if I uproot my children, force my husband to change bases, leave all the wonderful friends we've made, and give up the experience of living in a foreign culture that most people will never experience for nothing? I have no answers and I am still searching for my hope and my optimism. I know they are somewhere inside me I am just having a really hard time finding them. You know, the expression,"tomorrow is another day" is one I have used a lot in my life. Now I don't know what tomorrow will bring but my body assures me that I will still be exhausted and in pain. I hate that I feel this way and I think the worst thing about it is the confusion. What do I do? Who am I? Who do I want to be? How much can I do? As of now I am sitting in bed waiting for the answers to come to me. All I can think is that it is going to be a long night.

Update... Mark is watching me like a hawk after some scary experiences including blacking out in the shower. Gavin has been tremendously helpful. I hate to steal this innocence from his childhood but he often helps me up the stairs or when my legs give out. I am trying to compensate by giving him as much freedom as I can. He goes to an awesome youth center that keeps him really busy and when he isn't there he outside playing with his friends. He checks in every hour or so to see if I need anything. Alynna is so smart! She has learned that it is really hard for me to pick her up and to sit next to me instead of on my lap. We are still waiting for orders. They keep saying next week, next week. I really think it would help my motivation and focus to know where we are going and when we will be leaving. In the meantime I am just waiting, my days are blurring together. Mostly it is just pain, guilt, sleeplessness, and more waiting

written November 2009

I have always had problems with pain. In the last six months to a year it has just escalated. My hips and shoulders, my neck and back, even my elbows and my knees ache. It's like I have overextended everything. If you have ever played tennis and gotten sore elbows that is pretty much what it is like, just everywhere. It isn't so bad that I can't do things, it is just bad enough to where I don't want to. I get up in the morning and it takes me an hour or so before I am not hunched over and moving slow. I had gotten to the point where I was sleeping in shifts. I could sleep for three or four hours, get up, and then go back to bed 8-12 hours later for another three or four hours. When I was still trying to sleep through the night I would hit two or three am and then spend the next four hours tossing and turning just getting more and more pissed off and uncomfortable. Let me tell you waking up with me is a nightmare. My husband says it is bad enough to lay next to someone that flops around like a fish out of water but having to get up in the morning and go somewhere with me is a horrible. I nag him all the time that we never go anywhere. We are fortunate to live in Japan and yet we don't go exploring that often. After talking honestly with him recently I finally realized how hard I make it for everyone. I nag that we never go anywhere, so we make plans to take a trip. I am a bitch while I am packing things up and preparing because my body aches. Then we get into the car for an hour or two and by the time we get there I am so miserable that I am a bitch to be around. By the time I arrive at our destination my body aches and I don't want to walk, I don't want to carry our daughter, all I want to do is sit. I swear I try to make the best of it and push through it but I ended snapping at everyone. I bitch at my daughter for wanting to be carried, I bitch at my son for running ahead because I can't keep up, I bitch at my husband because he isn't talking to me (maybe because I am being such a bitch??) I am not a depressive person. I don't sit around feeling sorry for myself. I do want to do things. I want to keep a nice house, and then the thought of having to carry a full laundry basket up the stairs makes my eyes well with tears. I want to go places, then when we get there I can't muster the energy to enjoy myself. I want to play at the park with my kids, then after the walk over there I can't lift my daughter up or push her on the swings. I fucking hate this! I am sitting here right now in front of my computer with dishes in my sink, laundry that needs to be folded and put away, and a floor that hasn't been vacuumed in a week. Basically I am hiding from everything that needs to be done. I finally went to the doctor and he tells me that I probably have fibromyalgia but before a formal diagnoses he wants to run a bunch of tests. I asked him what I am supposed to do between now and the next time I see him (more than 30 days from now in the beginning of December.) He gives me a prescription for Elavil and a referral to mental health. He says maybe I am depressed. Look folks I know my body, I don't hurt because I am depressed. I start taking the pills he gave me and they do make me sleep...For 14 hours at a stretch, after which I wake up twice as sore as I was when I went to sleep. Then I walk around like a zombie because I feel all drugged up. I have no idea how to handle this. I am so lucky, I have a great husband, who loves me for me in spite of being such a bitch lately. We have two beautiful, charming, and intelligent children that are being completely being short changed in the good mom department but still manage to act pretty well adjusted and happy. My husband has a stable job that provides a decent income and we have a nice house. I just don't know how to deal with this. My husband has suggested we get a mamasan to come in and deal with the bulk of the house work but honestly I feel like I should be able to handle it. I work part time at a cafe and I have the best job. I get paid really well, the job is easy, and I work with some of the sweetest people. I have been cutting my hours more and more because I can't even do that. I can't stand for eight hours and make coffee and put in food orders. How pathetic is that? I don't even know why I am writing all this I just feel like I have to get it out. I hate feeling like this! I am going to call my doctor tomorrow and tell him that I am not going to take the pills anymore, they are just making things worse. I don't know what to say to him. I feel so stupid. I am going to go and fold laundry and try to clean up my house a little. My husband has started working nights so he is going to get up in about three hours and I don't want him to see how little I have accomplished today. I feel like I am such a disappointment to everyone. I don't know how to end this except to say that there has to be something I can do to not feel like this all the time.