Sunday, October 31, 2010

Quite the journey but I thought it was time for catch up

So we made the long trip from Japan to Phoenix. The transition was certainly difficult and it took several days for me to recover but overall I love it here. Phoenix is a nice area, the weather is great, the majority of the people are friendly, and I love the area we live in. The weekend after we got here we went house hunting with my awesome realtor. We looked at seven houses and the when we walked into the last one I knew we had found our home. It is about 2000 square feet and in a nice established subdivision. It is a little far from Marks work but the school district is nice and there is a park at the end of our row of housing. The house itself is on a big corner lot and has a HUGE backyard. It has a nice pool in the corner of the property that is completely fenced in. The yard itself is pretty much a blank slate. It is huge and almost completely dirt but I look at it and saw a lot of long term potential. The house is pretty plain on the front but has a nice sized two car garage and a small front yard that is all rocks so easy to maintain. When you walk into the house there is a huge space that is completely open but has a wall towards the end. I am going to make an adults only living room with a tv and a couch. On the other end I am going to put my formal dining room. I am going to paint an accent wall on the wall in the adult room and on the wall where I am going to set up my formal dining space. On the other side of the wall is a small but open kitchen that has an eat in area and a low wall that opens to a good sized family room. There is a tv niche and I am going to paint it the same color as the living and dining room. There is plenty of room for us to put our couch, Marks desk, and storage for the kids toys. On the other side of the wall in the family room and formal room is our four bedrooms and main bath. The flooring is all tile except for the bedrooms which has carpeting. It has four bedrooms so I am going to be able to have a spare bedroom. The main bath needs a lot of work. The lighting in the house is outdated but I think we are going to be able to update it over time. If you can't tell I am really excited about the house. It was a foreclosure and that has made my VA loan a pain in the ass. On top of that we have a lazy loan officer that hasn't been staying on top of things the way that we need her to. We were supposed to close on the 5th of November but it has been delayed because our loan officer didn't supply the necessary information in time so now we are going to have to stay in TLF for a few more days. It isn't that big of a deal but it is another $200 that I could have put toward the house. If you can't tell this is a major area of stress for me. For the most part my health has been up and down to even include something that was similar to a seizure. I have had several flares and have felt like crap a lot of the time. The doctors here have been very polite and helpful giving me the medication I need to deal and giving me referrals to the appropriate facilities. The hospital here is really just a clinic but my doctors in Internal Medicine have been very helpful. I spoke to my PCM and he believes I also have osteo arthritis. He gave me a referral to a reumatologist and I should be able to set that appointment soon. I also have an appointment for physical therapy and hopefully they can help me regain some mobility. Overall I am really happy with the attention my doctors have given me and am hopeful that I can get the care I need and possibly the medications that will help me.
The kids have handled the move pretty well. Alynna has taken it harder than Gavin and has been confused about why we don't have our things and where our house really is. Gavin has done really well and has been a huge help with Alynna. I waited quite a while to enroll him in school because we had to have the documentation to show we would live in that area. I didn't want to enroll him in the school that services the base and then have to move him again. He just started school last week and so far is loving it. Thankfully between what we did in transit and how far ahead the DODDS had him he is comfortable with his curriculum at school even though he missed a full quarter. He is making friends quickly and already has a crush on a girl named Rachel. Hopefully once we actually get into the house he will be able to make friends in our subdivision so he can ride his bike and play. Our subdivision is in a big U shape and only has two entrances so I feel safe letting him play outside once we get moved in.
Mark is doing really well. He started as assistant shop chief and is now doing a computer job in the flight where he is overseeing the training of the troops. His new flight is huge! There are more than 500 troops so his job is keeping him very busy. He is also having to repair the damage the person before him did. It is a lot to handle and I am trying to keep his stress at home to a minimum.
As for me like I said, I have felt like crap off and on and even had to take a trip to the ER because I had a severe muscle contraction on my right side. Thankfully there was no bleeding in my brain and Mark believes my Fibro and other problems may be related to a car accident I was in several years ago. It is certainly possible that I may have aggravated or re injured myself and that is what started all of this. There are days when I really struggle to get up and about but I am trying my hardest to maintain normalcy. I am really looking forward to moving into our house so we can settle in and stop living out of suitcases. Just in general between the upcoming doctors appointments and getting moved into our house I am really hoping my medical issues become more manageable. I am in a positive frame of mind even though Mark and I both have colds. I just can't wait to finally get into our house and get settled. I am really loving Phoenix and can see us happy here long term. There is a lot to do and hopefully once we get settled I am can get Alynna in a day care and find something to do with my time. I hope everyone is happy, healthy, and living a good and positive lives. I miss my friends in Japan but I am sending my love out to everyone reading this.

Sunday, September 5, 2010

Getting started and finishing up...

So I have been tearing the house apart the last few days and trying to get things cleaned and organized. There is still so much to do but I am working on it slowly, but consistently. There is this heightened sense of stress, excitement, and total chaos in our house. None of us are on a normal sleeping schedule. The kids have started to really push boundaries. Mark and I are having fun spending time together but I don't know if we are focusing on the same things. Like I said, there is so much to do and I am sure a bunch of the stuff that needs to be done is stuff not even on my radar. I am trying to get up and clean and organize in twenty minute spurts but so far I haven't managed to accomplish much. I got the downstairs bathroom, vacuumed the living room and rolled up my rug, and got my dishes into soak. The motivation is there but my pain level is pretty high today and the more I do the more I hurt. Mark is out cleaning his car so it looks good for the person coming to look at it. When he gets back into the house, which will probably be a few hours, I am going to get started on the window sills upstairs and then close all the windows. That might suck tonight so I am debating between that and doing the fans instead. I don't know that me standing on a chair reaching up is a great idea today:). Other than that I need to touch up and finish organizing the bathrooms so they are easy to pack and easy to clean. I don't know what all we are going to take with us in our luggage but I do have the stuff I want in our 1000 pound shipment in my head so at least that part is figured out. I still need to empty our my big planters out front but those suckers are like sixty pounds when they aren't full of dirt so I think I will need help with that one. I also need to replant my aloe plants so I can take my pretty planters with me and give my friend some pretty plants. Trash comes Monday and I don't know how we are going to get all the rest of the "trash" out of the house. I have stuff set aside for people but if they don't start showing up soon I don't know what I am going to do with it. I still need to pull down the drapes in the kitchen and put the blinds back up. Fuck, every time I think of one thing I need to do I think of two more. I try to keep reminding myself to take it slow that we have plenty of time but really we don't. The movers come on the ninth. That is Thursday, it is Sunday afternoon now. AHHHH. On the other hand, there is so much that is coming to a close now. As I set things aside to get packed and throw things away I reflect on our experience here. Living here has reinforced my desire to travel overseas. Between the wonderful people and the astoundingly beautiful things I have seen here Japan will always have a place in my heart. Dammit I should have made the time to go to Korea for a weekend or Guam. There is still so much of this world I want to see. I can only hope I can find the right treatment plan that will let me. I am trying to take this move as philosophically as possible. This is my life right now but it doesn't mean it will always be this way. I don't know what Phoenix will bring but I face it with an open mind and a hopeful heart. I know that everything will get done because honestly Mark and I are the kind of people that always get it done. I know that things will happen as they will and the only thing I can do is respond to them as positively as possible. There is so much in my head right now and I know I am going to leave one set of worries for another. I still have to make a doctors appointment and that is definitely a source of anxiety for me. I wish I could do more for the people of this base that are suffering under the same lack of quality care that I am. Honestly that is just one more I wish of thousands that are running through my head. Today I am going to focus on doing what I can and trying to be proud of that. Tomorrow will bring it's own set of worries and rewards so I am going to keep my head down and focused on that. Like an alcoholic, one day at a time. I was going to end this there but I can't help but hate that I have to think that way.

Wednesday, September 1, 2010

I felt like I got a lot accomplished today but their is still so much to do!

So today I finished getting my van ready for sale because I had someone coming to look at it. Yeah, I called him and he found another car already, he just apparently didn't feel the need to let me know. Mark is going to clean out his car and we are going to get it listed for sale shortly as well. They come to move us out on the 9th and our final check out is the tenth. They are trying to say that they will bring us FMO furniture since ours is going to be gone but between trying to clean and everything else I think we are just going to get a hotel room offbase. I think it is pretty dumb that we can't just have a room at the Misawa Inn after our pack out but until our final out in housing they won't approve it. The guy I talked to that canceled our car savings account was supposed to be sending me a check for the amount in there and I was going to use that to pay off the remaining stuff left on Marks credit crap so we wouldn't have any problems getting our loan. Well I still haven't received it so I called them today and they haven't sent the check yet so they are going to wire it but they want to wait until the tenth. I was expecting that money to be here any day so that I could get everything finished but nope, again, something got screwed up. Ugh, I just wish I had more cash on hand to take care of everything. I am getting so frustrated. The movers are coming tomorrow to look at the house and estimate how long it will take to get everything packed up. I still have to make a doctors appointment which sucks because I really don't want to talk to her. Ugh, again. I am just pissy. Mark has to be up and out the door before five tomorrow for PT. Why the fuck is he even still working?? He is going to finish up our finance paperwork tomorrow but I have no idea when that money will come in either. I know we are supposed to get five days in TLF but since our final check out isn't until the 10th we can't move in until then and I would assume Marks perdiem doesn't start until them either. Dammit, basically nothing is going the way I want it to right now.

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!

Saturday, July 31, 2010

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

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

Friday, July 30, 2010

Tired and achy but it has been a productive day.

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

Thursday, July 29, 2010

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

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

Wednesday, July 28, 2010

Another day, waiting...

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

Tuesday, July 27, 2010

Complicated Migraine

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

Monday, July 26, 2010

Blah, up and down, up and down

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

Sunday, July 25, 2010

Up late and slept the day away.

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

Saturday, July 24, 2010

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

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

Friday, July 23, 2010

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

Please excuse my recent pity party. I am frustrated by what is going on and the waiting is making me nuts, but it certainly isn't killing me. I am going to attach a link about the myths of fibromyalgia done by the Mayo Clinic and then a quote I think is appropriate. 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.

Thursday, July 22, 2010

Good day but damn I am tired!

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

Wednesday, July 21, 2010

Talked to paitent advocacy.

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

Tuesday, July 20, 2010

This sucks!

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

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