Blah, hurting and still having a really hard time getting any sleep.

I put in a call to my doctor this afternoon inquiring as to when my new meds will be in and expressing how uncomfortable I am. My doctor has an extreme aversion to using any kind of narcotics to relieve my pain because they are not part of the recommended treatment program for Fibromyalgia. On the one hand I understand, I don't want to become addicted to anything. On the other hand I am consistently frustrated by the fact that I am hurting and she refuses to give me anything to smooth this transition. This is the same woman that gave me 60 percocet while I was waiting for my blood test results. I have never asked for additional medication after my script has run out. When narcotics have been used in the ER I have never asked that they send me home with medication. I have shown absolutely no addictive or drug seeking behavior so I am having a really difficult time understanding why she refuses to give me something that would help my level of pain. Both times I have gone to the ER in a severe flare where I was having a hard time walking, and often was vomiting uncontrollably, I have been told that I could not have any medication to help me through what I was dealing with. It almost feels like a violation of the Hippocratic oath that they have the resources to help me but they won't. I recently had a complicated migraine and while I don't really remember it I was begging my husband to call the ambulance. He just kept trying to tell me that they wouldn't do anything to help me. This seems insane and almost an injustice that I have to suffer this way with no help. I am not asking for an open prescription for narcotics, I am just asking for something to help ease me through the worst parts. I don't think that request is unreasonable or a sign of some sort of addiction. I am really sore today and my body is aching. I want to just give up and lay down but that feels like cheating my children. So I am up, I have put my dishes into soak, I cleaned off my counter tops and made my son something to eat. I have no energy and really just want to sit here in front of the computer with my feet propped up and lots of pillows positioned around me to try and be comfortable and ignore the world. I know the weather coming in has increased my level of pain. I really resent feeling this way. I know I have only said it about a thousand times but this isn't me. I don't have the personality to sit on my ass and do nothing. It isn't that I don't have times of absolute laziness they are just tempered with days of action. I am done discussing this. Even I am sick of hearing myself talking about my level of pain. Okay, last time, I fucking hurt.

On an oddly positive/negative note we found out that the speaker at the AF ball is a really high up General. Mark is putting a lot of effort into putting together a really impressive electronic display and I am very impressed with what he has put together so far. He is receiving a lot of input from the committee and that is a very welcome change. We have been discussing the photos he will be using and even the possibility that I might spend a day or two with the new base commander trying to get some good photos to use. We don't know if that will happen but I am a decent photographer, I have a good camera, and I would love to be a part of this, even if it is a small part. We have also been discussing the shadow box that Mark will be making. They are wonderful as something to put on your desk or hang on a wall. He takes a simple shadow box, disassembles it, replaces the backing with fabric, generally uses coins, medals, or other Air Force memorabilia and attaches them to the backing. He is going to incorporate a Torii gate and an American flag but we have started to discuss what all he is going to add to it. He also etches the name of the speaker, the date, and the event on the glass front of the shadow box. I always love the way they come out. When he was younger Mark was a very talented artist. His tastes ran towards comic book style art and he still does a lot of that on the computer but his artistry has manifested in other areas that have really impressed me. In addition to learning how to use the photo and editing software online, by google video and youtube tutorials, he still uses his eye for symmetry and color disbursement for these projects. Honestly sometimes I am in awe of all he has taught himself and am very proud and grateful that he has found an outlet for his art in a way that benefits the military. I really hope he gets some recognition for his contributions this time.

On another front, we did find our copies of our tax returns for the year Colorado is trying to penalize us for. Our tax preparer converted our total taxable income, to include my income, onto his Colorado returns and that is what we are being taxed on. While getting in touch with the Colorado department of taxes we have manage to stave off any kind of garnishment. We have been in touch with H&R Block, who prepared our taxes, and they have opened a file to try and help us. I don't know how much help they will be but at least we have proof that it was filed incorrectly and can file an amended tax return so even if we owe them money, which we don't think we should, it won't be almost $1150. That has been a big relief. Now all we have to do is get Troy State to remove the money it says we owe and our home loan will be in the clear. Mark was taking a class through Troy State during hurricane Ivan. He spoke to his professor about the fact that we didn't even have a home more or less internet connection. His professor agreed to drop him from the class with no financial penalty. For some reason Troy state still says we owe them for the class so hopefully Mark will take care of that soon so we don't have any problems with our loan.

We still don't have orders yet but one of the girls involved in the EFMP program said she had received an email asking if we had family support in New Jersey. Yeah, that would be a big no and a bigger no thank you. I try to be a patient and positive person but I could see myself really losing it in Jersey and either getting shot or beating the crap out of someone, possibly both. Mark spoke to someone in the actual program and they removed McGuire from our list of possibilities but that really leads me to believe we will be sent stateside. Like I said, I don't care where we go. If it is stateside we may be able to buy a home and that is exciting, if we stay overseas we can continue to save money and pay off my vehicle to be in an even better financial position when we do return stateside. I just hope we get a response soon. We already know that it will be a 60 day process and Mark has asked that we stay at least until the AF ball so he can finish his work here and make sure it goes well. I have no problem with that, I just hope I am on my new medication and it is helping by then. I am actually excited to go. Several of my friends will be going and I would love to get some photos of us all dressed up.

Overall, I am still just trying to deal with the way my body is feeling and just get through each day as it comes. There are a lot of things that are positive in my life and I try to remind myself when I am hurting the most to be grateful for that.

Painful day today

So we still don't have orders. I know SURPRISE right? Mark is still so angry. I talked to him last night about needing him to be my cheerleader because right now I just can't do it. Even though it goes against his nature and when he is angry he tends to withdraw I really need to feel a connection with him. Like we are both working in the same direction and even though it sucks we love each other and like each other. Usually I am the one that provides the positivity and direction, right now I just don't have the energy. Then he came home this morning and told me he is taking on another project. He is going to be doing the electronic display and gift for the AF Ball. I am happy for him and know that he enjoys doing those things but between work, the help and connection I need, and this project I know something is going to have to be put on the back burner and I am pretty sure I know what it will be. He says it won't and we did discuss it but we have done this dance before.

I am hurting today. I think it is all the different things going on. Stress, changing meds which means I am weaning off one of my most helpful meds, and the changing weather. I feel like I am carrying around weights. Some on my shoulders, some on my hips, some on my back, and overall like I am just walking through water. It seems like it takes so much effort to do anything.

I had to take my meds close together yesterday and got a burst of energy. I cleaned my kitchen. By that I mean I CLEANED my kitchen, I took everything off the counters, scrubed everything down, did my dishes, and cleaned all my back splashes. I cleared off the computer desk and wiped it all down and put away all the computer components Mark had left out. I murphy oiled my dining room table and reorganized my center piece. I had fresh flowers, which I love but they left pollen on one of my mats so I had to change things around a bit. I also cleaned my downstairs bathroom including the toilet, which really needed it. I stopped when I really started to get shaky and started hurting but of course by then I had already pushed too much. Mark came home and was angry that I done so much but really it seems like so little to me and it needed to be done. He told me he was tired of me pushing myself so hard but it had to be done and I actually had the energy. Even though it doesn't seem like much it made me feel like I had accomplished something with my day. Mark really just wants me to laze about, and there are plenty of days that I have to do that, but I can't just lay here in a dirty house when I have the energy to do something about it. I think a lot of what he gets angry about is because he watched his mother do the same thing but she had a terminal condition, I don't. He said that after all the things this hospital has screwed up and knowing that I have abnormal branching in my brain they could have missed it and I could cause a bleed or an anuerism when I over do it or, I could hurt myself in an irreversable way and be crippled permanently. I understand where he is coming from but I don't think he understands that my personality will not allow me to just sit here if I have the energy to do something. Having the days just blur together makes me feel crazy. I have to feel like I accomplished something with my day. As an atheist I believe that this life is all I have. It is my responsibility to make the most of it. I only get one shot to love and live and take joy in everything I can. If that is having a nice dining room table arrangement or a clean kitchen that is enough to make me feel as though I have honored my life. I slept for a long time but it wasn't very restful sleep. I had a really hard time getting comfortable even though it was cooler in the house.

As for my mental state I am a little calmer. I really resent that I don't have more control or at least a more proactive role in all that is going on. I was sure we would be out of here before Gavin started school so I have put off getting school supplies so I am sure there will be things they are out of. I hate that I am going to have to make him switch schools during the middle of the year again. He did fine last time but it still concerns me. We got a letter from the state of Colorado where Mark is still a resident saying that we owed them a little over a $1000. H&R block misfiled our taxes in 2006 to include my income even though I am not a resident. We shouldn't owe them anything but I am afraid we are going to have to pay it anyway since we haven't been able to get a copy of the actual returns from either place. I have our records all the way back to 2007 but I don't have the one we need. It scares me because they are threatening to garnish his wages and if they do that I think we will lose our loan. Good bye savings. It won't wipe us out but it will definitely leave a big dent. Because we no longer have my income it has been more difficult to save anything. I am just worried about our finances in general. I know we won't get a lot back on our cars, and when we moved here we lost money on our allowance because of misinformation from Marks last squadron commander. I am just worried in general and I know that is adding to my stress and level of pain. I got an email from the person I got into the big argument with and am trying to decide how to handle it. I want to be honest but I don't want to hurt her or damage our relationship anymore than it already is. She said things that really hurt and made me doubt myself and worse she said them in anger and now says she didn't mean them. I don't do that, I don't say things in anger that I don't mean. Don't get me wrong, you probably don't want to piss me off enough to where I get real honest because I can say things that hurt, I just don't say things I don't mean, and that makes them hurt that much more. Gavin and I had to have a conversation yesterday because he has become disrespectful and started to neglect his chores. I had to explain that if he wants to enjoy all the freedoms we have given him then he has to fufill his responsibilities and maintain a good attitude at home or I can't trust him to give him those freedoms. I don't know how much it sunk in and I am afraid I am gonna have to put down the law there. I hate to think I am going to have to punish him right at the end of summer, I really want him to enjoy every second he can but he still has to listen and do what he is supposed to. Alynna is doing very well with the potty training but she still won't go poop and she has become such a drama queen. Especially with her brother. If he has something she wants or if he doesn't let her do things the way she wants to she has a breakdown that is just silly. She knows that Mark and I won't tolerate her fits but she is taking advantage of her relationship with him. She is becoming very independent and I want to foster that but at the same time there are days, well, there are days :) Overall, I am just exhausted and hurting. It doesn't matter why, I just hate the restrictions my body has placed on me. Even if it pisses Mark off I am going to continue to do what I can when I can and right now that is going to have to be enough.

AHHHHHHHHHHHHHH...Pissed at the world in general.

UGH! Mark is walking around pissed at the world and I can't say I blame him much. The house has been 90 degrees inside for the last few days and even after some very inventive, and expensive, explorations there is nothing we can do to cool this damn house down. I feel like total shit. My body is aching like crazy and it feels like there is a ton of bricks on my shoulders. I don't know if it is the decrease in meds, the weather, overdoing it, or what but regardless I am feeling pretty miserable and probably not the most fun person to be around. I honestly think that we are running to much electrical crap through our house because our stupid sling box doesn't work, only one of our tv's actually gets AFN, and we have had computer problems on and off for the last few days. I see my therapist on Wednesday and I think I have kind of regressed. I don't know if I have the patience to be resigned anymore. I am just sick of all of this shit. The unbelievable heat in the house, the fantastic medical care I have received, and the fact that two months later we are still waiting on fucking orders. AHHHH...Can something just fucking go right please? I have so many thoughts and worries outside of what we are dealing with currently. Where are we going? When are we moving? Is it Kadena or another overseas base or is it in the states? If it is in the states will I actually be able to purchase a house? What is my son's and soon to be my daughter's next school going to be like? Am I going to find doctors that can actually help me and answer my questions? I am ever going to get answers to any of these questions, and more intimidating,will I be happy with them? I know that things will come as they will and Mark is working as hard as he can to fix everything for everyone. That is probably part of why he is so pissed off. There is no fixing me, there is no way to get better medical care here, there is no way to cool off the house, and he is still struggling to find a way to find out where we are going and when. I think he is getting really angry at the Air Force and Misawa specifically. Thirteen years in the service and this is how we are living. We were joking and referring to our house as indentured servants quarters. I can't even discuss my doctors visits with him because as far as he is concerned he has seen enough of the way things are ran at that hospital to want to file some kind of complaint against them. The kids are driving Mark nuts when he is home. Alynna has started that adorable game---read sarcasm here---where she repeats whatever you say three hundred times. She has been doing really well potty training but she won't poop in the potty. She fell asleep on the bench at the dinner table with no underwear on, wakes up and says she has to go potty. Mark walks into the kitchen and she had crapped on the bench. I don't know if she did it in her sleep or if she just really doesn't want to do it in the potty. Funny as hell but at the same time...GRRR...Gavin doesn't know if he is coming or going. Mark and I have been so pissy that he probably feels like he is walking through a mine field when he has to talk to either of us. Also, all he knows is the rumors he has heard us say and that is what he is repeating. Only difference is he is repeating them as though they were fact. First he was excited about going to Vegas or Luke because we might be able to have a pool. Translated...He says to people we are gonna have a pool at our next house. Now that he has heard us discussing Kadena he is talking about how the weather at our next house will probably help my pain. I don't know what the fuck to do. I know the real answer is just to sit back and wait but that answer sucks.

Still resigned but feeling more positive about it.

So we were supposed to get orders on Friday but that didn't happen, color me surprised. I am still pretty much feeling the same as my last post. Resigned. I will continue to just try and be patient until we have something solid to move on and then I will have something to focus on. We may be able to go to Kadena in Okinawa and I am really excited by that possibility. Either way there are positives. If we go back to the states I can buy a house. If we go to Kadena I already know the language (mostly :)), Gavin will be in a good school in a safe neighborhood, we will have A/C (hallafreakinglua), and I can save some more money with COLA. Also if we go to Kadena my stateside vehicle will be completely paid off with low miles and in good condition.

Overall it has almost been liberating to relinquish control for awhile. Usually I am the one trying to stay on top of everything but right now I am just along for the ride and for right now I am okay with that.

On the negative side I got into a huge argument with someone I love recently and she said some hurtful things that made me doubt myself much the way Dr. Bowes comments did. I am trying really hard to remember that I can only examine my own feelings and control my own responses to others actions but sometimes it is hard not to wade in and try to make them see your side. I want to have healthy relationships with my friends and every now and then when one of them is acting in a way that hurts me I have no choice but to distance myself from their painful actions. I realize that they are not doing what they are doing to hurt me but they are making their own choices based on their personal situations and sometimes their own frustrations.

I can only be who I am and I am trying to make peace with that. Sometimes I am able to get up and around and do things around the house or with my kids. Other days I swallow a lot of pills and spend most of my day on the couch. Life brings what it will and all I can do is hope for the best, make the most of what I can, and accept it when my body won't allow me to do anything. I am still hurting but between switching meds and hopefully getting a wheelchair soon maybe I can go out and do a little more. Japan is so beautiful and I hate that I feel like I am missing out on experiencing it because of the limitations of my body.

Fuck it. Things suck but I love my life anyway

So basically I don't give a shit. Things are going to happen as they will and nothing I do or whine about is going to make one single goddamn difference. It is what it is right? My body hurts but that is what it is too. We are waiting for orders but they will come when they come and they will send us wherever they want to. I am so fortunate that I am married to a man that loves me and is willing to role with the punches. Even when my crap is what is punching him. Our children are beautiful and surprisingly well adjusted for kids that have so much to deal with. I am trying, and it is against my nature, just to shut the fuck up and let things happen as they will. It isn't like anything I have done up to this point has changed anything. I am no longer sad or depressed but I am resigned. Resigned is not necessarily positive but I am trying not to be negative anymore. It isn't easy, I think I am still walking that fine line between depression and optimism. Optimism seems a lot harder to grasp and depression seems like a lot easier to sink into. Right now I am resisting but every now and then I feel that sinking sensation.

Melancholy

Melancholy, what an odd word. Dissatisfaction, loneliness, uncertainty, intimidation, isolation, and helpless hopelessness. It is a word that means a lot to everyone in a different way. That is the best word to describe where I am right now. Whatever your interpretation of the word probably fits some part of how I am feeling. I try really hard to be a positive person but right now I feel so...I don't even know the word for it. For those of you who know me well that says a lot in itself. The sun is shining, the birds are singing, my children are happy, yet I feel completely disconnected from it all. I know that I am walking a delicate line between my normal optimism and this endless well of self-pity and despair. I keep trying to tip the scales the way I know I need to go but there is this conflicting pull just to bury my head and avoid it all.
Today is not a good day for my body. I am hurting and aching and moving slow. Mark said that he had someone from the EFMP program confirm that we would have orders by Friday. I don't have any faith in that. Even if we get orders it is just the beginning of the process. I have so many doubts and insecurities that I don't have anyway to assuage. My attitude has always been that whatever it is we just need to find the best way to deal with it that has the least impact on our children. Right now I am the obstacle. How do I deal with the way I feel and keep it from impacting my family? Right now I am really struggling to be everything to everyone that needs me. I can't help but look back over my day and feel like I have failed in every way possible. I haven't done dishes in days, there is another mountain of laundry to be folded, there is no way I can run the vacuum right now, and my kids haven't had a real home cooked meal in a week. They have been living on sandwiches, spagetti O's, frozen pizza, and chicken nuggets. My husband is so frustrated with the way I am acting but I can't seem to make him understand that it isn't a choice. He says get mad, get determined that there is something better coming. I don't want to feel this way or act this way but I can't help but be who I am right now. This second will pass and I know I will find my way back to the right path. My personality won't allow anything else. But, this second, this minute, of this day I am just so exhausted of all of it. Even the idea of getting orders is depressing because that means there is so much I have to do. Every task, every emotion just feels overwhelming. I can't help but to dwell on the negative because I feel so negative. Right now I feel like I have no purpose. All I am doing is bringing my family down. That is such a ridiculous thing to say but that is how I feel.

What did that accomplish?

So I feel like shit. I don't know if it is the weather change or another sleepless fucking night but my body is aching and right now I just don't give a shit about anything. Was mistakenly excited about meeting with one of the hospital directors about my concerns with Dr. Bowes. What a waste of fucking time. In the ten minutes I was in his office he explained that sometimes providers just need to be reminded that they are treating people not disorders. Yeah, thanks. Isn't that in a manual some where? He told me that he would speak to his practioners at their monthly meeting about being more sensitive to a paitents needs. I don't need someone to hold my hand or kiss my ass but I don't need someone being a dick because he thinks I am an uninformed idiot either. That meeting accomplished nothing, it was merely a way to make me think they give a shit. They don't, they haven't, and they won't. I just wonder if it is really gonna be any different when we get back to the states. I asked the director to look into my EFMP status and he told me he would make some calls and get back to me but there was really no way to expedite it. I bet if I was some Generals wife with a fucking hang nail we would already be back in the states. GOD DAMMIT I FUCKING HURT! What am I supposed to do about it? How the fuck am I gonna live my life like this? Creeping up and down the stairs, dirty dishes in the sink, laundry that never gets folded, cringing everytime Alynna jumps on the couch next to me, depending on Gavin to help me with household chores and his sister. How the fuck do I be me in this fucking body? FUCK!