Living with Chronic Pain
About a year ago I was diagnosed with Fibromyalgia. Since then I have also been diagnosed with myastenia gravis, an auto immune disorder that gives me severe muscle weakness. Hopefully keeping a blog will help me keep my struggle in perspective.
Tuesday, January 11, 2011
Playing catch up...
So it has been awhile since I have done this but I have been very busy. So we survived the fourteen hour plane ride with a lot of medication on my part. We arrived on the fourteenth and it was a beautiful but HOT day. I guess the one thing I can say with certainty is that the weather is always pleasant here. My in laws were kind enough to ship our truck to the airport parking lot and that made life a lot easier. My first impression of Phoenix was positive. The people at the airport were very friendly and helpful. We had to drive through the city to get to the base and while there are areas that are a little shady most of the city are very clean and well set up. We got to the base and they gave us a house to stay in instead of the traditional hotel room. It was a big relief to have our own space. Don’t get me wrong it is a small two bedroom house but it has a TV in the living room and master bedroom and the kid’s room has two beds so no one is sleeping on a couch. We also had a kitchen and washer and dryer.
I had a difficult and painful transition. The plane ride was really rough on my body and it took quite a while to recover. It took a few days for me to sober up enough to really look around but once I really did I was impressed. For the most part the area around the base is great. It is a little spread out but the road system is easy to understand and there are a lot of stores. One weird thing about here is that there aren’t a lot of malls. It is all strip malls where you walk outside from store to store
We had contacted a realtor prior to leaving Misawa and met with her the weekend after we arrived. We met at her office and did an area search with our criteria and came up with seven houses that met our standards and budget. We went house to house and each one had their good points but there was always something that I didn’t like. The last house we visited was IT. It is in a nice subdivision, a great layout, and a HUGE backyard. The flooring is mostly tile and it is about 2000 square feet. There is a formal living and dining room and then a big wall. On the other side of the wall are a small kitchen and a large family room. It has two bathrooms and the master bathroom and bedroom are nice and big. The backyard is enormous but mostly unfinished. In one corner it has a nice fenced in play pool that is in great condition and even has a nice waterfall feature. We are planning on developing an area for the kids to put up a trampoline and probably a swing set. As for the rest of the yard I don’t have any idea what we are going to do with it but there is a lot of space and a small shed. It was a foreclosure and we made an offer the next day. We expected to have to wait for quite a while to hear back and for them to counter because even though we offered full price we asked for closing costs, a two year warranty, and a lengthy closing date. We were surprised when they came back a few days later and accepted our offer. The only condition was they wanted an additional $1000 in earnest money and they wanted us to pay the HOA transfer fee. We accepted their conditions on the 25th of September and then wait for the signed contract to be returned so we could begin the process with the VA and our bank. I was so excited and ready but it took forever. We didn’t actually close until the middle of November.
We finally got a second vehicle this it is a nice Nissan Sentra with low miles. Until we got another vehicle we waited to get Gavin enrolled in school. We were worried about him being behind since he missed an entire quarter but he slid right in with no problems and has been making friends and annoying his teacher.
For the most part the kids have handled the transition well. Gavin enjoyed being out of school and spending some extra time with me. Alynna, on the other hand, keeps asking when we are going to go home. She seems okay for the most part but every now and then you can see how confusing all of this has been for her.
A good friend we hadn’t seen for several years had a layover at the airport here so we got a chance to go up and visit with him for awhile. I really missed him and I think Mark did too. He introduced me to someone here and she has been really sweet and helpful. We hope we can see them all again soon. Being me, I noticed one of our “neighbors” while we were in billeting had a son close in age to Alynna. I said hi and went over and interrogated them. They are both reserve and he works the border for four days and comes home for three. We have stayed in touch and they were our first visitors in the house. It has been lonely and challenging to make friends here because I don’t work. I agreed to be a key spouse but haven’t really followed up on it. I love the military but I am hoping we can stay here a long time and I can get to know some non-military families that won’t leave in three years. I have missed all of my friends in Japan so much! I don’t know if I realized how wonderful they were until I left.
My medical care here has been awesome. I have a case manager and my PCM is in internal medicine. All of my other doctors are off base. I am seeing a pain management specialist and we are trying to find the right combination of meds. To be honest I went through a pretty long period of depression right after we moved into the house and I am just now starting to come out of it. I guess between the stress, loneliness, pain, and tempo it was probably unavoidable. I was so excited to move into the house and get started making changes then I got here and became completely overwhelmed. Mark finally got irritated with me because I hadn't done anything. My mom is coming to visit tomorrow and I am really excited to have her here! She is so creative and we work well together so I am really hoping we can get the house painted, pictures hung, and get this place feeling like a real, warm, comfortable home.
Unfortunately, I am at the point where I know I couldn’t work so I think I am going to apply for disability. Between the pain, the lack of sleep, and the confusion between fibro fog and my medications it is just not possible for me to function in a professional environment right now. I haven’t ever used any kind of public assistance other than taking an SBA grant after hurricane Ivan. I don’t know, I still feel like I should be able to do something. I am trying to be realistic because I know if I did go back to work I would end up pushing myself way to hard and my family would be the ones that really suffered. Again, I just don't know...
Since we have gotten here it has definitely been a roller coaster ride but I think for the most part my family has their arms up and are all smiling.
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.
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.
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.
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