Monday, August 30, 2010

Okay today sucks but I am just gonna have to tough it out.

I have so much shit to do today! Unforunately, after a three day flare that kept me either in bed or on the couch I have to get it all done tonight. I did finally get my van floor mats steam cleaned and they are outside drying. I listed it and some of the other crap we came across while trying to organize on the yard sale. Hopefully that will generate at least a little bit of extra cash. Tonight I have to fold laundry, my least favorite and most painful chore, organize and clean both Alynna's room and my own, clean the kitchen, mop the floors, and vacumm everywhere. Honestly I still just want to go lay down with my heating pad. Mark is supposed to get our orders tonight so we can start scheduling everything. This morning Kojiki's new family came to pick her up. They are so nice and sweet and it feels good to know she will be loved and taken care of. I had to really struggle not to cry in front of the kids. After we got her to their car and got all of her stuff loaded Gavin didn't even make it to the porch before he was sobbing. It took everything I had not to join him. She is such a great dog and I am going to miss her so much! After I got Gavin inside and calmed down I went upstairs and balled my eyes out. I know I keep saying it but there is just so much to do and Mark is supposed to be at work until Thursday. I really need him here so he can help and we can get everything done but between work and trying to finish the display for the AF Ball I know he has as much on his plate as he can handle. We still haven't recieved the boxes we ordered for the speakers gift and they were ordered more than a month ago. I am also still waiting for the check to clear up everything on Mark's credit. We are getting close especially if we want to close quick with no problems with our loan. It doesn't help anything that it has been hot as hell all day. Looking back over this it is so scattered but that is pretty much how I feel. I can't get through an entire thought before I think of something else that needs to be done. I am gonna give myself another thirty minutes to sit on my ass before I get up and get started on the house. I think I am gonna start upstairs with the easier stuff so I don't wear myself out too fast. I know it is going to take a lot of drugs and I may not be able to do much tomorrow but I am gonna get all this shit done tonight...If it kills me :)

Saturday, August 28, 2010

Today should have been a great day but...

Today I woke up early and full of promise. Then I actually sat up in bed and between my hips, shoulders, knees, and even my fucking elbows my day pretty much ended right there. I hate how this sneaks up on me. I have laid around with the kids watching movies and trying not to whine too much. I managed to sew a ripped pillow but other than that I have been, and will probably continue to be, useless. I look at my piled up laundry, the dishes in the sink, and my messy living room and I just want to cry. I really hate this. I can't say that enough. I FUCKING HATE THIS!!!!!! I don't want to have to wake up and get out of bed to determine how productive my day will be. Don't get me wrong, Mark is home which is great, I have had fun with the kids but dammit I have too much stuff to do to be sitting on my ass desperately wanting to lay down with my heating pad. I am still trying to organize my to do list. There is a lot to do before we leave. Today I had planned on taking my van to go and vacuum it out. I have already pulled out all the mats and was going to steam clean them. I don't know maybe if I lay down for awhile and take a few more pills I will get up with a second wind and be able to do some of this stuff. My plan for today was to pull stuff out of the closets and decide what to list on the yard sale, get my van cleaned out, get my laundry folded and put away, get Kojiki's stuff ready for her new home, make dinner, and get my kitchen cleaned. It is 4:45 so I am seriously doubting dinner but maybe the rest of it isn't out of the question after a nap. I just don't know, and I hate not knowing.

Friday, August 27, 2010

So much to do, so little time, so little information to work off of.

AHHHHHHHHHHHHH!!!! I have so much to do and everything is happening so fast! I am a little sore, lot sore to be honest, today but feeling motivated so hopefully I can get some stuff accomplished. I am cleaning my furniture covers and have my minion (my son) is vacuuming my sofa. I am going to try to get some laundry done and Alynna's room organized. I slept well, thank you Lyrica! I am still a little shaky and hurting but like I said I have high hopes for today.
There is so much to do and we still don't have our actual orders yet. We know when are leaving but until the orders are actually cut we can't get TMO to set a date for our pack out or housing to set a final inspection day. I talked to a woman today who is going to come look at the house on Tuesday to do the PCS cleaning but it is expensive and we still have to clean the carpet. Ultimately it is probably just easier than trying to do it myself or having people help me. I am going to organize Alynna's toys so when they are packed up it isn't total chaos when we get it in the states. Same with our bedroom. Gosh, it seems like so much to do the more I think about it the larger it looms. I am still waiting for a check to pay off the last few things on Mark's credit report so our loan is ready to go. They said two weeks, its been two weeks and nothing. We are also still waiting on the shadow boxes so Mark can make the gift for the speaker at the AF Ball. Just one more thing to check off the list. He is also still working on the electronic display as well so AHHH come on already, get done with work so I can make you do all the things I want done and watch you do them while bitching about you not doing them right. His last day is next Thursday but hopefully we get his orders either today or Monday so we can start scheduling everything. I love that everything is moving so fast but I am starting to realize how fast. We only have 15 days left in Japan. I am alternately so happy and so sad about that. I talked to the my old Mok crew today and hopefully we will be able to go out on the 11th. I am going to miss them all so much. One of the hardest things about quitting work was leaving them. I have met some of the most amazing people here and I am going to miss them desperately when I leave. Right now I am focused on all that needs to be done but I know at some point it is going to hit me that I am leaving all those wonderful people behind and some of them I will probably never see some of them again. I hope we can stay in touch but you know how it is when you move. You get involved in your own stuff, you don't see them or talk to them on the phone, and you fall out of contact. Part of my heart just broke even writing that. I know I need to stay on track and get some of this stuff done today but now I am sad and just want to gather up all my friends and hug them to me.

Thursday, August 26, 2010

It is all starting to sink in and I have SO much to do!

Reality struck this morning and DAMN I have a lot to do! I am trying to sell off most of our winter stuff since we won't be needing it. I have made tentative plans to organize the kids toys so when the movers get her it doesn't all just get dumped into boxes I have to organize when we get to Luke. Depending on when our pack out date gets set for I am going to start packing what we are actually taking with us and what will be shipped in our smaller shipment. Honestly right now I am just making plans because the timing is still so uncertain but I see a lot of laundry in my future. I have sent out a message looking for someone to come help me clean the house for our out processing. I got the list of specifics today and it really isn't that bad, it just needs to be clean. The fridge, oven, bathtubs, and blinds are all gonna suck but the rest of it is kinda common sense stuff. Feeling oddly frantic because I woke up this morning and realized it was actually happening. Feeling a little sore, I think the weather is changing and between that and the stress of all that needs to be accomplished I am going to try to spend today just relaxing and organizing my game plan. We should know our pack out date soon and I don't care if I have to spend extra they are not moving FMO furniture in here for us to sleep on, I am going to the Misawa Inn. My meds are helping but I still have to make a doctors appointment before I leave and I am dreading it. I am really hoping I don't have to go all super bitch but I am going in prepared either way.

Excited but intimidated by all the changes.

So, even though it will sound melodramatic, I am standing at the edge of this yawning abyss. I am about to leave behind all the good and bad things that Misawa has and take a leap of faith that Arizona will be better. I keep psyching myself up saying, oh well, there is this thing and that thing, and it is gonna be great. In reality I wake up in the middle of the night in a cold sweat thinking what if. In so many ways I am so happy about this. The first, obviously, is having access to a real doctor that might actually give a shit and help me. We are looking at houses and shouldn't have a problem with getting a loan and actually owning property for the first time in our lives. Of course that means additional worries like property taxes, broken water heaters, and how much does pool maintenance really cost? I am looking forward to being back in the states but I will miss Japan and all the wonderful people I have met here so much! It sounds like Mark's work situation will change for the better but there are no guarantees. All of this is happening so quickly yet somehow I feel like I am moving in slow motion. Mark has been so busy out processing while I have spent a lot of time on the couch or in bed. I keep trying to organize my thoughts and develop a good game plan but even though we are leaving very quickly there is still so much that is unknown that it is difficult to make plans that I know I can follow through on. My new medication is really helping. I am a lot less sore and achy but the tenderness and tension in my shoulders is worse now then it was with my previous medication. It makes me feel sluggish, like I am moving through water. I also think it effects my concentration because I find myself asking the same questions over and over again. I am still debating putting Gavin in school since he would only be there for about ten days before we pulled him out again. It would be nice to have him occupied with that so he doesn't get stressed about the move but at the same time he really is helpful. We should find out soon when TMO will be here to pack us out, and we are trying to decide the best day to do that. I am also trying to find someone who can do a PCS cleaning but since we don't know the days that has been difficult too. I know I have to see my doctor one more time to get a refill of a prescription and because she told me that she would give me medication that would help me travel. After the four days of misery I experienced and her absolute refusal to give me anything for relief I am not sure how that appointment is going to go. I do know that if she denies me any help I am going to demand to see her supervisor immediately and if necessary scream down the walls of that hospital until I get what I need. I am still so angry at her and I am really hoping it doesn't come to that. It is funny the more I have tried to be a polite and positive person the more I think people have tried to take advantage of me. Just because I choose not to be a bitch certainly doesn't mean I can't or that I am afraid to. Mark is irritated with me because he has so much on his plate right now and my sleeping schedule has not been very accommodating. We did have a really good discussion last night about our fears and trying to keep our relationship close and hold on tight to our sense of humor. It made me feel a lot better even though I don't think it was a conversation he wanted to have, especially at 3 in the morning. Even as I am sitting here writing this I am still trying to make a plan on how to go about everything. What are we getting rid of, what goes in our smaller shipment, what can I sell, when should I get my cars ready for sale and will they sell? Ugh, there is so much to do, so little time, and I am so overwhelmed by it all. I know it is a good thing but it just all seems so huge. I am going to go back upstairs and crawl into bed hoping that instead of laying there thinking of all the things I need to get done I can actually get some sleep.

Sunday, August 22, 2010

I feel like poop but we have gotten a lot accomplished.

Ugh, I am feeling so lazy and weighed down. My medication is helping my pain but I am glad I am going to be escalating them soon because my hips, shoulders, back, and arms are hurting. I like this med but it makes me feel like I am walking through water. I am hoping when I get more accustomed to it I won't feel so heavy. Between Mark and I we managed to get the house steam cleaned. The kitchen and upstairs bathrooms need to be done and I need to sweep and mop downstairs. I am getting excited about leaving but it is happening so fast! We are trying to finish off our checklist and get out of here as soon as possible so we can get stateside, pick up my truck, visit family, and try to find a house. We are considering taking a six month lease or base housing so we can look around a little but the fact that we are going to be losing a lot of money scares me a bit.

Friday, August 20, 2010

A letter to the healthy world...

I read this recently and thought it was a good illustration of how difficult chronic pain can be and a good way to communicate my condition.

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

An additional note is that this is a couple years old and now they know that our pain is based from our Central Nervous System, it sends out pain signals in a similar pattern to that of an epilleptic seizure, which is why things like Neurontin work on a fair number of us. It is an anti-seizure medication. They also know that once the pain signal reaches our muscles that our muscles seize it and start to reproduce the pain locally as well as stemming from our brains. So we get a double whammy of pain, just because our brain stops sending the signal it doesn't mean the pain will stop yet, now we know we have to wait for our muscles to agree to it as well. I sincerely hope that you all will take heart from this letter and share it with those you are close to. It made a big difference in my life. When I grasped who and what I had become, I wanted everyone to know and understand. I wanted everyone to have a fair shot to be in my life but to understand that if I make plans with you and cancel them at the last minute, it isn't my choice, it isn't an option. If you can't handle that or me forgetting important things, then we should end the friendship now, because this is me...for better or for worse. This IS the NEW me.

Finally turning the corner...

So pretty much nothing but good news right now. After the med squadron denied me any assistance in transitioning meds I finally got my Lyrica. It is really helping but it makes me sleepy, itchy, and hungry. I am feeling better though and I am still ramping up. Eventually I am supposed to be taking 12 pills a day but right now I am only up to five. I feel bad though, even though I feel better I have NO energy. The first pill I took knocked me on my butt big time! Also, WE GOT ORDERS!!!!! We are heading to Luke AFB in Phoenix Az. We are really excited and Mark is moving through our check out list as fast as possible. We are hoping to be out of here by the middle of September but we will see how that goes. I feel so bad being so lazy, there is so much to do! Two cars to sell, a house to purge, getting everything packed up, getting all of us checked out of the med squadron (dicks) and our info sent to Luke, getting the house cleaned, deciding what to take with us on the plane, dealing with the plane ride itself is a huge worry for me! AHHH!! Just thinking about it makes me want to take a nap, or maybe it is the meds? Happy and excited and sad all at once. I think right now I am just so overwhelmed by everything that I don't even know where to start. That doesn't even take into account all the things we need to do when we actually get back to the states! We are hoping to buy a house but we might end up taking a six month lease first so we can look around and aren't rushed. I don't want to end up buying a house in a bad area or school district just because I don't know better. I am also worried about how long Gavin will be out of school for. Like I said it is good news but oh my gosh there is a lot to think about and do!

Tuesday, August 17, 2010

Been awhile but nothings really changed

So it's been awhile since I have posted but honestly I have just felt like total shit and nothing else has really changed. I can't get a call back from my doctor to see if my Lyrica is in yet and we still don't have orders. Weaning off my meds has been really hard. I feel like I am wearing around a 40 pound vest that is just dragging on my back, hips, and shoulders. I can't sleep for shit but I can't seem to get out of bed or off the couch either. I cancelled my appointment with my therapist this morning. I feel like crap and I am still holding out hope that my doctor will call me back. My house is a total pit. By that I mean TOTAL pit! Everything needs to be done but I just don't have the energy to do it. I don't feel like I have energy to do anything. Mark has been gone to a AF Ball committee meeting since around 10:30. I am glad he is involved but damn I wish he could just stay home for a few days. We got our grocery shopping and Gavin's school supplies this weekend but honestly it wiped me out to where I couldn't do anything else so I ended up in bed. I stayed there most of Saturday night and Sunday morning. Don't get me wrong, I don't actually get any sleep, I just don't have the energy to get out of bed. Honestly I am feeling a little sorry for myself. This sucks. I have a girlfriend leaving really soon that I don't know if I am gonna get to see again, and another whose husband is coming home soon and her parents are flying in. They are gonna take her kids to Disney but she has been running non-stop for several months now and I really wish I could help her in some way. My mom and I haven't talked in awhile. I did get a chance to have a long conversation with a great girl I went to school with. She is so wonderful and positive even though she is facing her own struggles. I love her positive attitude and talking to her was wonderful! The heat has returned to Misawa with a vengeance but there is all this pressure in the air like it could rain at any second. I know the weather is contributing to my misery. That sounded so self-centered. My life could be worse in so many ways but I just have a really hard time remembering that sometimes. My kids have been in the middle of some sort of sibling battle royalle and have both been testing the limits of my sanity. My son is doing things on principle and Alynna just thinks he's being a dick. I kinda agree with both of them. Gavin is getting ready for school but I don't think that it has quite kicked in that his summer freedom is about to end. We are all covered in bug bites and that is just adding to our irritation. Ugh, in general I feel like shit, my house is a mess, my kids are debating killing each other, we still don't have orders, and I just want to pull the covers over my head and hide.

Friday, August 13, 2010

Long day and I haven't even really done anything.

I finally took a pill last night around 4:30 because I just couldn't fall asleep. Between Alynna sneaking into bed with us and just being uncomfortable I didn't sleep very well. I finally got some comfortable sleep when Mark and Alynna got up but I didn't actually get out of bed until almost 2. I laid around on the couch and screwed around on the internet until almost 5. I took a pill to help pep me up a bit and managed to pick up a little. A good friend is planning on coming over this evening to help me tackle my mountain of laundry. I swear, nothing would ever get folded if she didn't come over every now and then. I am still feeling like crap. My body is aching and sore and I am just hurting. I made several trips up and down the stairs and I don't know how many more of those trips I have left in me. I know at some point I have to get dishes done because they are seriously starting to take up counter space and one sink is completely full. They have all been soaked so other than unloading and reloading the dishwasher it won't be that hard. To be honest the idea of standing on my feet long enough to do it is enough to make me want to lay back down on the couch. How silly is that? The thought of doing something makes me tired. Overall even though I feel like shit my mood is actually pretty positive. Gavin had a really bad day today and I am struggling to find the right way to handle it. His friends at the park wouldn't talk or play with him today and he says he doesn't want to ever go back outside again. I told him that sometimes people are just jerks or they don't realize how much what they are doing hurts our feelings. I advised him to play for himself and if they want to play with him great and if not he can still have fun on his own. He is sticking to never going outside again but I think he will come around and I am trying to just be patient and let him come to that decision on his own. Is it wrong that I want to go outside and make some little kids feel really bad about themselves? My mother bear instincts came out watching him cry but I know the best way to learn from this experience is to let him handle it on his own terms. I have to go get school supplies and groceries tomorrow and I am not looking forward to it. I am really hoping I feel better tomorrow but I am going to take Gavin with me and in exchange for him cleaning my room and organizing his sisters room I am going to give him some money to buy something. I choose to look at it as paying him for helping me but I am really hoping he buys something that he wants to show his friends and will encourage him to go back outside. With everything that is going on in this house I know it is all adding to his level of stress and I am really hoping it will make him a stronger person in the long run but that doesn't mean I don't wish I could carry the burden of growing up for him. Both the kids are showing response to the stresses that permeate this house. I wish it was different but I really am doing the best I can. I really hope we get orders soon and that it gives us all some reason for excitement and motivation. We are still considering leaving before Mark but I can't imagine trying to travel with both the kids on my own. I am still waiting for a call back from my doctor about when my new med will come in and whether or not I can get a wheel chair. Hopefully I hear back from her tomorrow but it isn't like there is any hurry. Between bills, groceries, and school supplies our budget is going to be pretty tapped. I am really wishing this day and tomorrow were just magically over. It would be so nice to wake up tomorrow with a clean house, a full fridge, with school supplies ready to go. Never hurts to wish right.

Thursday, August 12, 2010

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.

Tuesday, August 10, 2010

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.

Monday, August 9, 2010

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.

Saturday, August 7, 2010

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.

Thursday, August 5, 2010

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.

Tuesday, August 3, 2010

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.

Monday, August 2, 2010

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!