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.

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.

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. http://www.mayoclinic.com/health/fibromyalgia/AR00056
"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.

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.

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.

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.