I have yet to find Christmas this year. Yes I've heard music on the radio and watched certain movies that Aaron and I always watched, but it's just not right. It just doesn't seem worth it without Aaron.
Christmas was his favorite time of year. We'd start listening to Christmas music in October! Every year I decorated the house from head to toe. I wanted it to be bright and colorful and full of the holiday because it made Aaron happy. Without him here, I just can't find a reason or point to do it. It's gone from something I loved to do for someone I love to something that's just another thing I'd have to clean up and put away if I got it out.
I feel like Cindy Lou Who from The Grinch
"Where are you christmas
why can't I find you
why have you gone away
My world is changing
I'm rearranging
does that means Christmas changes too
where are you Christmas
do you remember
the girl you used to know
You and I were so carefree
and nothing easy
did Christmas change
or just me"
http://youtu.be/tc7XixGmQt8
I know this is short. I just don't know what else to say.
Sunday, December 11, 2011
Thursday, November 10, 2011
Long time no blog
So. This past month has been quite a journey. Not only is the road hard to follow, not knowing where it will end, but it seems to disappear at points and reappear 30ft over under a rock.
Right after Aaron passed I felt this huge weight lifted. Relief. He was no longer in pain. I didn't have to worry about him being sick, falling, being in pain. I didn't have to worry about who was going to stay with him while I went out. I had lived with a fear of something happening to him for almost a year and nothing I could do about it. I had spent 2 1/2 years watching the one I love decline, helpless to do anything about it but try to make him comfortable. To have that worry, fear and stress no longer dictating my day felt great. Of course in the midst of that relief the most important person to me was missing. I no longer had my best friend. The one person who loved me as I was, thought I was sexy in sweats with bed head and always put me first.
November 2nd caught me off guard. Already one month without Aaron. The relief, while still there, is now significantly smothered with grief. So many times I have seen something or thought something and the first one that comes to mind to tell is Aaron. If we could take things with us when we die, I'd start a list so I'd remember everything to tell him. The hardest thing for me is I have yet to have a dream with Aaron is in and I so badly want to see his face and talk with him, feel his arms around me, hear his voice. I pray at night to see Aaron in my dreams, but all I have are pictures.
Aaron and I talked about many things that he wanted for me after he was gone. He made it very clear that he wanted me to be happy and live life. He wanted me to find something within myself and continue on. Remarry. Have kids if I chose to. Knowing what he wanted I have started to do some of those things. As promised, I purchased a kiln to do glass fusing. Aaron always wanted me to have my own kiln and pursue my glass fusing. I have made a couple other purchases and planned a trip. I've had mixed responses from people about me spending money after people donated. I want to be very clear that I did pay medical bills. I have not spent any money that I received as donations after Aaron's passing on these purchases. Although I also feel like I shouldn't have to make account to everyone on how I spend my money. I assume most of you know that I could take back everything I have bought and cancel anything I have planned and give back any money I received to have Aaron back. I greatly appreciate all the donations I have received, both before and after Aaron passed. There are many times that if it hadn't been for the donations we would have been able to pay rent. I know Aaron wanted me to be happy. He loved to give me things and surprise me. I share what I'm doing not to throw it in people's faces that I'm spending money, but because I'm happy and proud of myself for being strong enough to move on and I want to share that with people and have them happy for me.
I'll try to write more often. Things are really up and down for me. I am currently still waiting for a hearing on my disability claim. I have had to add one additional anti-anxiety med since Aaron passed away. I have difficulty sleeping. I have been having complications with my reproductive system. Some of you may remember I had a problem with an ovarian cyst on our way down to California a little over a year ago. I had an ultrasound done a couple weeks ago and had an appointment today to discuss the findings. The ultrasound showed a 4cm polyp in my uterus as well as 4 cysts on my right ovary each 2-3cm in size. So this explains the issues I've been having. I will have to have surgery to remove the polyp and cysts. Depending on how things look after they take the cysts my doctor may remove my right ovary as well. They will to a D and C to rule out cancer, although she does not suspect any due to my age and shape of the polyp. It's not something that needs to be done right away so thankfully it won't interfere with the trips I have planned. I most likely won't have the surgery till January and the recovery time should be short. I've never had a surgery and am fairly apprehensive so prayers would be appreciated.
Thank you all for continuing to read my blog.
Right after Aaron passed I felt this huge weight lifted. Relief. He was no longer in pain. I didn't have to worry about him being sick, falling, being in pain. I didn't have to worry about who was going to stay with him while I went out. I had lived with a fear of something happening to him for almost a year and nothing I could do about it. I had spent 2 1/2 years watching the one I love decline, helpless to do anything about it but try to make him comfortable. To have that worry, fear and stress no longer dictating my day felt great. Of course in the midst of that relief the most important person to me was missing. I no longer had my best friend. The one person who loved me as I was, thought I was sexy in sweats with bed head and always put me first.
November 2nd caught me off guard. Already one month without Aaron. The relief, while still there, is now significantly smothered with grief. So many times I have seen something or thought something and the first one that comes to mind to tell is Aaron. If we could take things with us when we die, I'd start a list so I'd remember everything to tell him. The hardest thing for me is I have yet to have a dream with Aaron is in and I so badly want to see his face and talk with him, feel his arms around me, hear his voice. I pray at night to see Aaron in my dreams, but all I have are pictures.
Aaron and I talked about many things that he wanted for me after he was gone. He made it very clear that he wanted me to be happy and live life. He wanted me to find something within myself and continue on. Remarry. Have kids if I chose to. Knowing what he wanted I have started to do some of those things. As promised, I purchased a kiln to do glass fusing. Aaron always wanted me to have my own kiln and pursue my glass fusing. I have made a couple other purchases and planned a trip. I've had mixed responses from people about me spending money after people donated. I want to be very clear that I did pay medical bills. I have not spent any money that I received as donations after Aaron's passing on these purchases. Although I also feel like I shouldn't have to make account to everyone on how I spend my money. I assume most of you know that I could take back everything I have bought and cancel anything I have planned and give back any money I received to have Aaron back. I greatly appreciate all the donations I have received, both before and after Aaron passed. There are many times that if it hadn't been for the donations we would have been able to pay rent. I know Aaron wanted me to be happy. He loved to give me things and surprise me. I share what I'm doing not to throw it in people's faces that I'm spending money, but because I'm happy and proud of myself for being strong enough to move on and I want to share that with people and have them happy for me.
I'll try to write more often. Things are really up and down for me. I am currently still waiting for a hearing on my disability claim. I have had to add one additional anti-anxiety med since Aaron passed away. I have difficulty sleeping. I have been having complications with my reproductive system. Some of you may remember I had a problem with an ovarian cyst on our way down to California a little over a year ago. I had an ultrasound done a couple weeks ago and had an appointment today to discuss the findings. The ultrasound showed a 4cm polyp in my uterus as well as 4 cysts on my right ovary each 2-3cm in size. So this explains the issues I've been having. I will have to have surgery to remove the polyp and cysts. Depending on how things look after they take the cysts my doctor may remove my right ovary as well. They will to a D and C to rule out cancer, although she does not suspect any due to my age and shape of the polyp. It's not something that needs to be done right away so thankfully it won't interfere with the trips I have planned. I most likely won't have the surgery till January and the recovery time should be short. I've never had a surgery and am fairly apprehensive so prayers would be appreciated.
Thank you all for continuing to read my blog.
Saturday, October 1, 2011
An extreme makeover: the God edition
I'm sitting in Aaron's hospital room looking out the window at the sun attempting to break through the gray clouds and remind us it's still there.
I know God is there doing the same thing. While there's all this gloom covering right now I know that God is right on the other side, not only reassuring me but also waiting to welcome Aaron into his kingdom and show him to his mansion. I know this isn't how it happens, but I imagine God yelling, "Move that bus!" Aaron seeing the mansion and God saying "welcome home Aaron Jamison. Welcome home". Aaron is about to get an extreme makeover of Godly proportions. He will be cancer free, pain free, no diabetes, able to run, jump, sing, do all the things that have been slowly taken away from him.
Over the past 24 hours he has become more and more unresponsive. This morning I thank God that he was alert enough for him to respond when I said I loved him and for me say goodbye and tell him it was ok to go home when he was ready and that I would be ok. I really believe that. I know God will take care of me. While I will miss him and still go through grieving for the loss of my husband and best friend I have peace.
As I'm writing this I'm listening to Pandora online singing "Blessed be the name of the Lord. You give and take away. You give and take away. My heart will choose to say, Lord blessed be your name." Aaron seems to be more peaceful with music playing. Yesterday was the Gaither Vocal Band, today it's Mercy Me Radio. There is something in Music that God has always used to speak to me. It never fails that just when I need it, the perfect song comes on the radio. I know Aaron used music as a prayer language to God.
I want to thank everyone for the overwhelming response in comments, prayers and well wishes. Aaron is an amazing man and I know he touched alot of people through this journey and before. While it doesn't seem fair at times, I know God used Aaron to reach so many people that otherwise may have never had a seed planted in their life. While I knew God before I married Aaron, he still made a huge impact of my relationship with God as well as opening my eyes to other things. I became a more open, accepting Christian. I learned through Aaron that It doesn't matter what race, gender, sexual preference, living situation, mental status, emotional status, financial status, God calls us to love them, not judge. You will never reach someone for God or plant a seed if you are judging or condemning them or telling them God doesn't love them because of who or how they are. God looks at everyone the same, in love, and he's the one who will be the judge in the end. We are called to love in Jesus' name in the mean time.
Thank you Aaron for being my best friend. You love me more than I though any man ever could. You always made me feel beautiful, loved and accepted as I am. Even when I was depressed, in sweats with bead head. I couldn't have asked God for a better mate. You were an answer to prayer. I pray for you now that you would rest, have sweet dreams and run into our Father's arms. With all the elderly people who pass, I'm sure he's looking forward to some young blood and better jokes. I imagine your Comedy Sportz jersey and ref shirt will be waiting for you in your mansion's closet.
I love you beyond what I can express.
Love always,
Your Monkey
I know God is there doing the same thing. While there's all this gloom covering right now I know that God is right on the other side, not only reassuring me but also waiting to welcome Aaron into his kingdom and show him to his mansion. I know this isn't how it happens, but I imagine God yelling, "Move that bus!" Aaron seeing the mansion and God saying "welcome home Aaron Jamison. Welcome home". Aaron is about to get an extreme makeover of Godly proportions. He will be cancer free, pain free, no diabetes, able to run, jump, sing, do all the things that have been slowly taken away from him.
Over the past 24 hours he has become more and more unresponsive. This morning I thank God that he was alert enough for him to respond when I said I loved him and for me say goodbye and tell him it was ok to go home when he was ready and that I would be ok. I really believe that. I know God will take care of me. While I will miss him and still go through grieving for the loss of my husband and best friend I have peace.
As I'm writing this I'm listening to Pandora online singing "Blessed be the name of the Lord. You give and take away. You give and take away. My heart will choose to say, Lord blessed be your name." Aaron seems to be more peaceful with music playing. Yesterday was the Gaither Vocal Band, today it's Mercy Me Radio. There is something in Music that God has always used to speak to me. It never fails that just when I need it, the perfect song comes on the radio. I know Aaron used music as a prayer language to God.
I want to thank everyone for the overwhelming response in comments, prayers and well wishes. Aaron is an amazing man and I know he touched alot of people through this journey and before. While it doesn't seem fair at times, I know God used Aaron to reach so many people that otherwise may have never had a seed planted in their life. While I knew God before I married Aaron, he still made a huge impact of my relationship with God as well as opening my eyes to other things. I became a more open, accepting Christian. I learned through Aaron that It doesn't matter what race, gender, sexual preference, living situation, mental status, emotional status, financial status, God calls us to love them, not judge. You will never reach someone for God or plant a seed if you are judging or condemning them or telling them God doesn't love them because of who or how they are. God looks at everyone the same, in love, and he's the one who will be the judge in the end. We are called to love in Jesus' name in the mean time.
Thank you Aaron for being my best friend. You love me more than I though any man ever could. You always made me feel beautiful, loved and accepted as I am. Even when I was depressed, in sweats with bead head. I couldn't have asked God for a better mate. You were an answer to prayer. I pray for you now that you would rest, have sweet dreams and run into our Father's arms. With all the elderly people who pass, I'm sure he's looking forward to some young blood and better jokes. I imagine your Comedy Sportz jersey and ref shirt will be waiting for you in your mansion's closet.
I love you beyond what I can express.
Love always,
Your Monkey
Saturday, September 24, 2011
Pain meds, Paramedics and Prayer
So it's been a while. It's not that I don't have things to write, it's more of I don't know where to start.
I'll go back a couple weeks.
About three weeks ago we noticed Aaron's abdomen was getting larger. We knew he couldn't be gaining weight as his appetite had gone down quite a bit. After talking with our nurse it was decided that he had developed Ascites. This is the accumulation of fluids as the liver gives out and isn't able to process everything anymore. That Monday he went in for a paracentesis where they use an ultrasound to see where the fluid is versus where the organs are and use a needle to go in and drain the fluid. They took off four liters of fluid (two soda bottles for those that need a visual). There was more than that there but they only take a maximum of 4 liters the first time to see how the body handles it. He seemed to be doing ok on the trip home. When we got home he made it up to the font door but was too weak to get up the front step and fell doing a belly flop on the front step. He came down on his knee, abdomen, chest and hit his head. With no strength to get up and me unable to lift him we had to call the paramedics. So we had the big fire truck pull up and the three guys were able to get him back up and into the house where he could get in his hospital bed. As a couple hours went by he said his port was starting to hut more and more. He finally pulled back the dressing to find that the needle had completely bent and come out of his chest all except for one little hook at the end of the needle. He he hadn't been getting any pain meds for a couple hours. The on-call nurse for hospice came out and put a new needle in but at this point we had to play catch up with the meds. He sat with the kitchen timer set for 20 minutes so he could hit his button to get additional meds as often as possible.The next few days were rough. He slept a lot as the drain had not only taken out fluid, but electrolytes and proteins. That Friday the nurse raised the dose of his pain meds.
We didn't make it to church Sunday. Honestly, after the week before, I was terrified to take him out of the house. I didn't want him to fall again. Especially out in public, where we'd still have to get him home and hope he could get up the front steps without another fall. It's not that he's clumsy, but so strength or stamina left.
Monday the nurse came out to hook up a new bag of pain meds. Aaron was still hurting pretty bad so they raised the dose again. Everything was pretty low key for a couple days till Thursday morning.
Aaron decided to sleep in our bed for the first time in a quite a while. Having a pillow top mattress the sides of the bed don't have a lot of support. Aaron rolled over to get get up and go to the bathroom and slid off the edge. He wasn't all the way to the ground but had no strength left and I wasn't able to help him up so he went down to the ground. We tried using the walker, the shower chair, anything that he could use to get up but it wasn't happening. So at 5:30 in the morning we called the paramedics and they came out to get him up. They sat him in a chair to rest for a bit before he tried to do anything else, made sure he wasn't hurt and left. Aaron sat in the chair for a good 25 minutes and was feeling like he had gotten some strength back. Seeing as he still hadn't gone to the bathroom, which was the whole point of getting up in the first place he used the walker and moved from the chair to the bathroom. When he got up from the toilet he was too weak and fell again, with his ribs landing across the toilet seat, ripping it off the toilet, the corner of the counter in his arm pit, his chest and port hitting the counter as he was wedged between the counter and the toilet and his foot going through the wall behind him. I hear him yell and fall from outside the door and went running. There was no way I could get him up myself and he was in such an awkward position that he couldn't get himself up so at about 6:15 I called the paramedics again. The same three guys came out. They were awesome. Very nice, not perturbed at all, even realized they recognized our last name and knew Aaron's mom from when she worked at the city. They got him into a more comfortable position and while he was resting before the next move talked about how great Jan was. When Aaron had fell on the front step we had given the guys our cancer sucks bracelets. Two of the same guys were there now and told us how the third guy had also made the connection of Aaron and Jan and at his wedding that following weekend he, and his bride, wore the bracelets in the wedding. It was a wonderful feeling for Aaron and I that someone would be so supportive of someone they hardly knew to wear the bracelets at their wedding.
The guys eventually got Aaron up and in his bed. They talked a bit more. One of the guys said that when he had come back from his tour of duty in Afghanistan that Jan had been the first person to give him a hug and say welcome back and how much that had meant to him. After they left, and with Aaron settled, pills taken and him dozing off I also went back to bed for about an hour. When I woke up I heard beeping in the living room. It was Aaron's pain pump saying it was out of meds. Of course it couldn't have been worse timing as Aaron had just fallen twice, bruising everything and possibly breaking ribs, and needed the pain meds!! Aaron said the alarm had been going off for about 45 minutes which meant it had been that long since he had had anything. I called hospice. His nurse was scheduled to come out that day anyway, just had to bump up the time. We didn't have an extra bag of meds at the house so she got on the phone with the pharmacy and both the meds and the nurse showed up in about 25 minutes. She got him all hooked up again and once again raised the dose of meds he would get both continuously and when he hit the button for an extra dose. She also changed the program so he could hit the button for an extra dose from every 20 minutes to every 10 minutes.We spent the next couple hours with the kitchen timer again playing catch up trying to get his pain under control.
Since the three falls last week, he is getting weaker pretty steadily. He's gone from taking a shower by himself, to using a shower chair and after today's shower will be doing sponge type baths with my help. He is still able to get up to the bathroom using the walker, but hospice brought in the portable commode for us to have access to when he needs it.
He has an appointment to have more fluids drained off on Tuesday as things have built back up again and are causing more pressure and discomfort.
As for me, I went to my doctor a couple weeks ago and was put on an additional medication to help with anxiety. So I am now on three medications and at about a 14 month wait for my turn at a hearing for disability. While the new med is helping, I still have times of panic.
Thank you all who have been praying for us and have been able to help financially. As of now we are going to be able to pay rent through November. If things continue as they have been, this should provide for me till I receive Aaron's life insurance check which will hopefully get me through till my hearing. Of course that's contingent on NOTHING unexpected happening and we all know how that usually goes.
Our friend has been working on a story about Aaron for quite some time now and it will be in this Sundays Register Guard paper in the Oregon Life section. Please check it out. It's months in the making. Thank you Serena and Ivar for working so hard and spending the time with us to put this together.
Thank you for taking the time to read this and catch up. Please continue to pray for us as I know from this point out thing will not get easier.
I'll go back a couple weeks.
About three weeks ago we noticed Aaron's abdomen was getting larger. We knew he couldn't be gaining weight as his appetite had gone down quite a bit. After talking with our nurse it was decided that he had developed Ascites. This is the accumulation of fluids as the liver gives out and isn't able to process everything anymore. That Monday he went in for a paracentesis where they use an ultrasound to see where the fluid is versus where the organs are and use a needle to go in and drain the fluid. They took off four liters of fluid (two soda bottles for those that need a visual). There was more than that there but they only take a maximum of 4 liters the first time to see how the body handles it. He seemed to be doing ok on the trip home. When we got home he made it up to the font door but was too weak to get up the front step and fell doing a belly flop on the front step. He came down on his knee, abdomen, chest and hit his head. With no strength to get up and me unable to lift him we had to call the paramedics. So we had the big fire truck pull up and the three guys were able to get him back up and into the house where he could get in his hospital bed. As a couple hours went by he said his port was starting to hut more and more. He finally pulled back the dressing to find that the needle had completely bent and come out of his chest all except for one little hook at the end of the needle. He he hadn't been getting any pain meds for a couple hours. The on-call nurse for hospice came out and put a new needle in but at this point we had to play catch up with the meds. He sat with the kitchen timer set for 20 minutes so he could hit his button to get additional meds as often as possible.The next few days were rough. He slept a lot as the drain had not only taken out fluid, but electrolytes and proteins. That Friday the nurse raised the dose of his pain meds.
We didn't make it to church Sunday. Honestly, after the week before, I was terrified to take him out of the house. I didn't want him to fall again. Especially out in public, where we'd still have to get him home and hope he could get up the front steps without another fall. It's not that he's clumsy, but so strength or stamina left.
Monday the nurse came out to hook up a new bag of pain meds. Aaron was still hurting pretty bad so they raised the dose again. Everything was pretty low key for a couple days till Thursday morning.
Aaron decided to sleep in our bed for the first time in a quite a while. Having a pillow top mattress the sides of the bed don't have a lot of support. Aaron rolled over to get get up and go to the bathroom and slid off the edge. He wasn't all the way to the ground but had no strength left and I wasn't able to help him up so he went down to the ground. We tried using the walker, the shower chair, anything that he could use to get up but it wasn't happening. So at 5:30 in the morning we called the paramedics and they came out to get him up. They sat him in a chair to rest for a bit before he tried to do anything else, made sure he wasn't hurt and left. Aaron sat in the chair for a good 25 minutes and was feeling like he had gotten some strength back. Seeing as he still hadn't gone to the bathroom, which was the whole point of getting up in the first place he used the walker and moved from the chair to the bathroom. When he got up from the toilet he was too weak and fell again, with his ribs landing across the toilet seat, ripping it off the toilet, the corner of the counter in his arm pit, his chest and port hitting the counter as he was wedged between the counter and the toilet and his foot going through the wall behind him. I hear him yell and fall from outside the door and went running. There was no way I could get him up myself and he was in such an awkward position that he couldn't get himself up so at about 6:15 I called the paramedics again. The same three guys came out. They were awesome. Very nice, not perturbed at all, even realized they recognized our last name and knew Aaron's mom from when she worked at the city. They got him into a more comfortable position and while he was resting before the next move talked about how great Jan was. When Aaron had fell on the front step we had given the guys our cancer sucks bracelets. Two of the same guys were there now and told us how the third guy had also made the connection of Aaron and Jan and at his wedding that following weekend he, and his bride, wore the bracelets in the wedding. It was a wonderful feeling for Aaron and I that someone would be so supportive of someone they hardly knew to wear the bracelets at their wedding.
The guys eventually got Aaron up and in his bed. They talked a bit more. One of the guys said that when he had come back from his tour of duty in Afghanistan that Jan had been the first person to give him a hug and say welcome back and how much that had meant to him. After they left, and with Aaron settled, pills taken and him dozing off I also went back to bed for about an hour. When I woke up I heard beeping in the living room. It was Aaron's pain pump saying it was out of meds. Of course it couldn't have been worse timing as Aaron had just fallen twice, bruising everything and possibly breaking ribs, and needed the pain meds!! Aaron said the alarm had been going off for about 45 minutes which meant it had been that long since he had had anything. I called hospice. His nurse was scheduled to come out that day anyway, just had to bump up the time. We didn't have an extra bag of meds at the house so she got on the phone with the pharmacy and both the meds and the nurse showed up in about 25 minutes. She got him all hooked up again and once again raised the dose of meds he would get both continuously and when he hit the button for an extra dose. She also changed the program so he could hit the button for an extra dose from every 20 minutes to every 10 minutes.We spent the next couple hours with the kitchen timer again playing catch up trying to get his pain under control.
Since the three falls last week, he is getting weaker pretty steadily. He's gone from taking a shower by himself, to using a shower chair and after today's shower will be doing sponge type baths with my help. He is still able to get up to the bathroom using the walker, but hospice brought in the portable commode for us to have access to when he needs it.
He has an appointment to have more fluids drained off on Tuesday as things have built back up again and are causing more pressure and discomfort.
As for me, I went to my doctor a couple weeks ago and was put on an additional medication to help with anxiety. So I am now on three medications and at about a 14 month wait for my turn at a hearing for disability. While the new med is helping, I still have times of panic.
Thank you all who have been praying for us and have been able to help financially. As of now we are going to be able to pay rent through November. If things continue as they have been, this should provide for me till I receive Aaron's life insurance check which will hopefully get me through till my hearing. Of course that's contingent on NOTHING unexpected happening and we all know how that usually goes.
Our friend has been working on a story about Aaron for quite some time now and it will be in this Sundays Register Guard paper in the Oregon Life section. Please check it out. It's months in the making. Thank you Serena and Ivar for working so hard and spending the time with us to put this together.
Thank you for taking the time to read this and catch up. Please continue to pray for us as I know from this point out thing will not get easier.
Thursday, August 18, 2011
Help me to help you to help me
Alot of people have told me, "Let me know if you need help." Well I need help. I don't do well asking for help. When I was a little kid, my phrase was "self do it". I still have this mentality. So, this is a blog meant to help you help me.
When people ask me what can I do to help? or what do you need help with?, the question is so overwhelming to me that my mind literally goes blank and the anxiety begins to build. So what would be more helpful to me is if people who are willing to help called me and stated what they would like to help with.
The easiest way I can think to describe what I need help with is put yourself in my shoes. Think about what needs to be done in your house on a daily basis. Dinners, some house keeping, yardwork, dog walking, etc. Any help is much appreciated.
If you are able or willing to do any of the above or something else beyond what I mentioned please let me know. If you aren't able to do any physical help, but have some extra you can donate to help with bills that's great as well. You can email me or call or use the button at the top right to donate.
kristinjamison@gmail.com
541-337-4129
Thank you all for your support and prayers.
When people ask me what can I do to help? or what do you need help with?, the question is so overwhelming to me that my mind literally goes blank and the anxiety begins to build. So what would be more helpful to me is if people who are willing to help called me and stated what they would like to help with.
The easiest way I can think to describe what I need help with is put yourself in my shoes. Think about what needs to be done in your house on a daily basis. Dinners, some house keeping, yardwork, dog walking, etc. Any help is much appreciated.
If you are able or willing to do any of the above or something else beyond what I mentioned please let me know. If you aren't able to do any physical help, but have some extra you can donate to help with bills that's great as well. You can email me or call or use the button at the top right to donate.
kristinjamison@gmail.com
541-337-4129
Thank you all for your support and prayers.
Tuesday, August 9, 2011
How much pain can a patient take if a patient can take pain?
I know it's been a while since I've written. There are many things to write about. The problem is picking one or two things and trying to pull them out of the mass of thoughts going through my head on a daily basis. I don't do well with change and that's all my life consists of these days. Let me see if I can back up my thoughts and try to catch you up.
Aaron's parents came out to visit at the end of last month. They were here for 10 days, and in that 10 days we watched all of the Harry Potter movies and ended it by going to see the final one in the theater. That was fun since it had been a while since I had seen the first ones. Also while they were here Relay For Life happened. It was something we had been preparing for for months. We had an awesome team of friends who helped up have someone on the track for all 24 hours of the event. I, along with four of our friends stayed the full 24 hours. Our team raised just over $1,800 for the American Cancer Society. Aaron was able to be at the event for quite a few hours. He participated in the survivor lap, for those who have beat cancer as well as still have cancer, along with his caregivers, me, his mom and dad and our friend Tim.
Right before Aaron's parents came to visit, his pain started to increase in both his liver and colon. The Dr.s and hospice nurse raised his pain medication by 10mg at each dose (3x a day). Again, just this last weekend, his pain level increased greatly. We called late at night on Thursday and talking to the on call nurse who told up we could increase the dose of his secondary pain med, which we did and it helped somewhat that night. The next day had really no change. We were able to go to the first get together for Aaron's 20 year high school reunion and stay for about an hour before he had to come home. Saturday his pain increased again. Of course being the weekend we got the on call nurse and not his regular nurse who knows him. There was a very frustrating conversation and after 20-30 minutes it was decided he could once again up his pain meds by another 10mg at each dose which brought it to a total of 50mg on Methadone 3x a day as well as using the 50mg of Oxycodone every hour as needed. At 20mg per ml, we successfully used up 60ml bottle in three days. We are currently still at that dose and it seems to keep his pain level at a constant 6 out of 10 on the pain scale, with some increases on and off.
Since the last increase I, as well as Aaron, have noticed a significant change in his vision, stability, thought process, ability to communicate, as well as increased sleeping. I feel like I'm watching him, bit by bit, fade away. Aaron is no longer able to play his XBOX 360, which used to give him a great distraction and way to deal with pain. Not only is he unable to see the screen or read any directions, he falls asleep before he's able to play. He is now dizzy often with any movement and has taken several falls in the last couple weeks. He has started to hallucinate more when he's really sleepy and talks about things that he's dreamed about or seen in a brief moment of closing his eyes. He's still at a point where he knows those things haven't happened, but I know it has to be frustrating. I've seen him struggle and get frustrated that he's unable to draw cards for friends anymore. I have seen this disease take away almost everything that played a part in making Aaron who he is. Most days he sleeps the majority of it.
After a visit with his nurse today, he will be put on a portable pain pump. This will replace his methadone and oxycodone with a constant stream of pain meds as well as give him the option to his a button every 10-15 minutes for an extra push of the medication. The hope is to have it in place and have working for at lease 24 hours before the weekend starts. Hopefully all the paperwork gets processed in time.
I know, logically, that the increase of the pain meds and the effects it's having, means that things are starting to wind down and the end of the road for this journey is coming up. While I am nowhere near ready to loose Aaron, I do look forward to the day that he's no longer in this horrible pain, not only physically, but emotionally.
Sunday, May 29, 2011
Who put the granade in the snowball?
So I have started several blogs over the past couple weeks but never get far. There are so many things I want to say and are feeling but there are just no words to describe. The past few weeks have been an emotional roller coaster and I feel like not only will my seat belt not latch but the lap bar is stuck in the upright position while I'm about to go over the tallest drop.
I say the past few weeks, but looking back it's only been 10 days. Ugh. I did not need that realization.
On the 18th Aaron's parents left for their move/roadtrip to New York. It's something we knew was coming and Aaron had talked about alot with his parents (side note: he wanted the knowledge that his parents had a place to go and would be taken care of when he was gone and they wanted the security of a home to come back to rather than trying to start a move when all was said and done) it has been hard without them. Even though we encouraged them to go and get settled, then come back, I did feel a bit abandoned. It's hard to be the soul caregiver 24 hours a day. Let me make it perfectly clear that I love Aaron and do all of this out of love and respect, not obligation, but even then it makes for a long day.
After the pizza fundraiser, on the 16th, Aaron's back started to hurt terribly, along with the already new and bad liver pains. With the help of hospice, multiple phone calls and nurses visits, his pain meds were raised to a level that makes him comfortable which is now three times a day instead of two.
Shortly after that he started having hallucinations. Not of bugs on the wall or scary things around him but of travel. Like sitting in a train and viewing our entertainment center as an antique cabinet while he composed a text message on an old fashion type writer. It may sound funny now but it was quite scary and confusing at the time. It turns out this is related to the fact that his liver is loosing function and starting to create a build up of ammonia in his system. So once that was figured out another medication was added (twice a day) to, in essence, bind the ammonia and flush it out of his system. At some point the ammonia will overpower what the medication is able to do and the cognitive issues will return.
On Tuesday Aaron's lift chair broke. It had been such a blessing that our friend Karen gave to him to use after her husband had used it. It looked to be more than we could or had the patience to fix. Two separate screws were broken off, a screw on the other side was bending and some wood had been splintered. This may not seem like a huge thing to overcome but it was almost my breaking point. It just seemed to be the icing on the cake.
Wednesday morning I found a new lift chair on craigslist for $75. That is almost unheard of being that they cost around $1300. That was truly a miracle. A friends son was able to pick it up and deliver it as well as haul off the old one to St. Vincent DePaul where they can hopefully fix and resell it.
Wednesday afternoon was Aaron's first day out of the house since the fundraiser. We had to go to the doctor to have bloodwork done to get a pre-authorization for his insulin. When we got home Aaron got light headed getting out of the car and fell on the sidewalk in front of our house. We tried for a while to get him up, just the two of us, but there was just no strength in his legs. After a while we decided to call the paramedics. Of course they showed up in all the fire truck and ambulance glory.(at least no sirens). The men were able to help Aaron up and he used his walker to get back into the house. Of course somewhere in the process of getting up he separated a rib on the right side.
So to recap, in the last 10 days, extreme back pain after fundraiser, Aaron's parents moved, hallucinations and realization that liver is failing, chair breaks, fall and separated rib. No wonder the last few days all I've wanted to do is sleep.
After things happen so close together my depression usually gets worse. I go through so many ups and downs and anxiety having to make decisions, solve problems, come to grips with the newest "normal" that I just crash when there's a lull.
The last three days all I've wanted to do is sleep. Aaron's very good at letting me do what I need when I can. Of course I still need to make sure that he gets his meds at the right times, has something to drink, doesn't need any breakthrough pain meds and figure out what's for breakfast, lunch and dinner. With his new med regiment he has to have his first dose at 7am and has to have something to eat before he can take it. Then again at 2:30, dinner time and the last dose at 10pm. This is even harder to do when I'm depressed and don't want to get up. I don't list everything I have to do for Aaron to complain. But people don't know what our life is like on a daily basis.
Today I feel indifferent about everything. I want to sleep, but I don't want to leave Aaron alone. I'm hungry but I have no appetite and nothing sounds good. I'm tired of watching tv, but I have no interest in doing anything else. I feel restless and agitated. I also feel like I could cry at any moment. And there's nothing I can do to fix or change any of it. That's the hardest part.
When I was a little kid and didn't want help with something I would say "self do it!" well. Now I'm in a situation where so much is going on and there's nothing I can "self do"! I am completely helpless to be present while Aaron's body slowly fails, then just stops working. Sure I can make sure he has pain meds and is as comfortable as possible but that doesn't actually fix anything.
Our next hurdle is going to be finding a roommate and fast. We have to have someone move into our second room in order to make it financially. On Aaron's disability alone there is no way we can pay all our bills with the $300 that is left after rent. It's hard to find someone that's willing to move into the mess that is our life and be willing to pay to do so.
The only way we could get by with not having a renter is if my disability appeal comes through and I am granted disability for my anxiety and depression. Honestly I think if they lived just a day or two in our house they would practically throw the certificate at me! But instead they go by notes and the amount of money they would have to pay out to me over my lifetime if I never go back to work. It's so easy for someone who's never dealt with this illness to look at you and say " I hope you feel better soon." It's not like a virus that goes away. While some days are better than others, it is something that I'll have to deal with constantly and will probably always be on medication for.
So that's my update. If you have any extra or are willing to help us out there's a donation button at the top right on my blog. Things are going to get ugly real fast for us we don't get something to bring in that extra money we need.
Thank you for following and reading both mine and Aaron's blogs. It is nice to know that people care even when we feel so alone.
I say the past few weeks, but looking back it's only been 10 days. Ugh. I did not need that realization.
On the 18th Aaron's parents left for their move/roadtrip to New York. It's something we knew was coming and Aaron had talked about alot with his parents (side note: he wanted the knowledge that his parents had a place to go and would be taken care of when he was gone and they wanted the security of a home to come back to rather than trying to start a move when all was said and done) it has been hard without them. Even though we encouraged them to go and get settled, then come back, I did feel a bit abandoned. It's hard to be the soul caregiver 24 hours a day. Let me make it perfectly clear that I love Aaron and do all of this out of love and respect, not obligation, but even then it makes for a long day.
After the pizza fundraiser, on the 16th, Aaron's back started to hurt terribly, along with the already new and bad liver pains. With the help of hospice, multiple phone calls and nurses visits, his pain meds were raised to a level that makes him comfortable which is now three times a day instead of two.
Shortly after that he started having hallucinations. Not of bugs on the wall or scary things around him but of travel. Like sitting in a train and viewing our entertainment center as an antique cabinet while he composed a text message on an old fashion type writer. It may sound funny now but it was quite scary and confusing at the time. It turns out this is related to the fact that his liver is loosing function and starting to create a build up of ammonia in his system. So once that was figured out another medication was added (twice a day) to, in essence, bind the ammonia and flush it out of his system. At some point the ammonia will overpower what the medication is able to do and the cognitive issues will return.
On Tuesday Aaron's lift chair broke. It had been such a blessing that our friend Karen gave to him to use after her husband had used it. It looked to be more than we could or had the patience to fix. Two separate screws were broken off, a screw on the other side was bending and some wood had been splintered. This may not seem like a huge thing to overcome but it was almost my breaking point. It just seemed to be the icing on the cake.
Wednesday morning I found a new lift chair on craigslist for $75. That is almost unheard of being that they cost around $1300. That was truly a miracle. A friends son was able to pick it up and deliver it as well as haul off the old one to St. Vincent DePaul where they can hopefully fix and resell it.
Wednesday afternoon was Aaron's first day out of the house since the fundraiser. We had to go to the doctor to have bloodwork done to get a pre-authorization for his insulin. When we got home Aaron got light headed getting out of the car and fell on the sidewalk in front of our house. We tried for a while to get him up, just the two of us, but there was just no strength in his legs. After a while we decided to call the paramedics. Of course they showed up in all the fire truck and ambulance glory.(at least no sirens). The men were able to help Aaron up and he used his walker to get back into the house. Of course somewhere in the process of getting up he separated a rib on the right side.
So to recap, in the last 10 days, extreme back pain after fundraiser, Aaron's parents moved, hallucinations and realization that liver is failing, chair breaks, fall and separated rib. No wonder the last few days all I've wanted to do is sleep.
After things happen so close together my depression usually gets worse. I go through so many ups and downs and anxiety having to make decisions, solve problems, come to grips with the newest "normal" that I just crash when there's a lull.
The last three days all I've wanted to do is sleep. Aaron's very good at letting me do what I need when I can. Of course I still need to make sure that he gets his meds at the right times, has something to drink, doesn't need any breakthrough pain meds and figure out what's for breakfast, lunch and dinner. With his new med regiment he has to have his first dose at 7am and has to have something to eat before he can take it. Then again at 2:30, dinner time and the last dose at 10pm. This is even harder to do when I'm depressed and don't want to get up. I don't list everything I have to do for Aaron to complain. But people don't know what our life is like on a daily basis.
Today I feel indifferent about everything. I want to sleep, but I don't want to leave Aaron alone. I'm hungry but I have no appetite and nothing sounds good. I'm tired of watching tv, but I have no interest in doing anything else. I feel restless and agitated. I also feel like I could cry at any moment. And there's nothing I can do to fix or change any of it. That's the hardest part.
When I was a little kid and didn't want help with something I would say "self do it!" well. Now I'm in a situation where so much is going on and there's nothing I can "self do"! I am completely helpless to be present while Aaron's body slowly fails, then just stops working. Sure I can make sure he has pain meds and is as comfortable as possible but that doesn't actually fix anything.
Our next hurdle is going to be finding a roommate and fast. We have to have someone move into our second room in order to make it financially. On Aaron's disability alone there is no way we can pay all our bills with the $300 that is left after rent. It's hard to find someone that's willing to move into the mess that is our life and be willing to pay to do so.
The only way we could get by with not having a renter is if my disability appeal comes through and I am granted disability for my anxiety and depression. Honestly I think if they lived just a day or two in our house they would practically throw the certificate at me! But instead they go by notes and the amount of money they would have to pay out to me over my lifetime if I never go back to work. It's so easy for someone who's never dealt with this illness to look at you and say " I hope you feel better soon." It's not like a virus that goes away. While some days are better than others, it is something that I'll have to deal with constantly and will probably always be on medication for.
So that's my update. If you have any extra or are willing to help us out there's a donation button at the top right on my blog. Things are going to get ugly real fast for us we don't get something to bring in that extra money we need.
Thank you for following and reading both mine and Aaron's blogs. It is nice to know that people care even when we feel so alone.
Monday, April 25, 2011
How does one grow a money tree
This morning I'm panicked, scared, feeling hopeless.......We are soon going to find ourselves living beyond our means. It's not that we're splurging or being frivolous, income is just not enough to cover necessities.
Next month Aaron's parents will be starting the move to New York. This has been the plan for quite a while and something Aaron wants, because he knows his parents will be taken care of there and able to move on with a good life. While this is something we all have discussed and want to happen, the reality is that once they are gone we are financially unable to make it from month to month.
Last night Aaron did the thing no one wants to do and went over the budget. Listing out our income (is social security), and all of our bills. Thanks to finding assistance for our prescriptions though manufacturers and hospice our Rx cost per month is down to about $28 a month. After his parents move we will be dropping cable, Netflix and lowering Aaron's phone plan. We were finally approved for enough food stamps that we don't have to budget for food. After dropping things and not having to pay for food, we're still about $600 in the hole each month.
I called our property management today and was told they do not accept any rental assistance programs from the government. I feel extremely blessed that we got the place we live. There is almost no chance of finding another place with a garage, washer dryer hookups and a fenced yard for $550 a month. I consider our rent to be very inexpensive.
We have talked about getting a roommate and after that help with rent and utilities that brings us down to about $250 over each month.
I am currently still waiting to hear back about my disability denial appeal. That could be anywhere from 3-4 months of waiting. If the appeal is denied it could be up to a year for a hearing.
It is so frustrating. Not only do I feel helpless in everything Aaron is going through and the fact that I can't fix anything, now I am unable to cover monthly needs.
Please pray for us. I know things are tight for everyone but if you have any extra there is a donation button to help us on the right side of this post. I'm just at my whit's end. That's all for this post. I'm off to take a Xanex and find some chocolate.
Next month Aaron's parents will be starting the move to New York. This has been the plan for quite a while and something Aaron wants, because he knows his parents will be taken care of there and able to move on with a good life. While this is something we all have discussed and want to happen, the reality is that once they are gone we are financially unable to make it from month to month.
Last night Aaron did the thing no one wants to do and went over the budget. Listing out our income (is social security), and all of our bills. Thanks to finding assistance for our prescriptions though manufacturers and hospice our Rx cost per month is down to about $28 a month. After his parents move we will be dropping cable, Netflix and lowering Aaron's phone plan. We were finally approved for enough food stamps that we don't have to budget for food. After dropping things and not having to pay for food, we're still about $600 in the hole each month.
I called our property management today and was told they do not accept any rental assistance programs from the government. I feel extremely blessed that we got the place we live. There is almost no chance of finding another place with a garage, washer dryer hookups and a fenced yard for $550 a month. I consider our rent to be very inexpensive.
We have talked about getting a roommate and after that help with rent and utilities that brings us down to about $250 over each month.
I am currently still waiting to hear back about my disability denial appeal. That could be anywhere from 3-4 months of waiting. If the appeal is denied it could be up to a year for a hearing.
It is so frustrating. Not only do I feel helpless in everything Aaron is going through and the fact that I can't fix anything, now I am unable to cover monthly needs.
Please pray for us. I know things are tight for everyone but if you have any extra there is a donation button to help us on the right side of this post. I'm just at my whit's end. That's all for this post. I'm off to take a Xanex and find some chocolate.
Sunday, April 17, 2011
Palm Sunday
Mark 11 (NIV)
Jesus Comes to Jerusalem as King
1 As they approached Jerusalem and came to Bethphage and Bethany at the Mount of Olives, Jesus sent two of his disciples, 2 saying to them, “Go to the village ahead of you, and just as you enter it, you will find a colt tied there, which no one has ever ridden. Untie it and bring it here. 3 If anyone asks you, ‘Why are you doing this?’ say, ‘The Lord needs it and will send it back here shortly.’”4 They went and found a colt outside in the street, tied at a doorway. As they untied it, 5 some people standing there asked, “What are you doing, untying that colt?” 6 They answered as Jesus had told them to, and the people let them go. 7 When they brought the colt to Jesus and threw their cloaks over it, he sat on it. 8 Many people spread their cloaks on the road, while others spread branches they had cut in the fields. 9 Those who went ahead and those who followed shouted,
“Hosanna![a]”
“Blessed is he who comes in the name of the Lord!”[b]
10 “Blessed is the coming kingdom of our father David!”
“Hosanna in the highest heaven!”
11 Jesus entered Jerusalem and went into the temple courts. He looked around at everything, but since it was already late, he went out to Bethany with the Twelve.
This Morning church was amazing. Listening to our pastor talk to the kids about the Triumphal entry and hearing the children yell "Hosanna! Hosanna!" as loud as they could gave me such joy. I can only imagine what it would have been like to be there for the real thing. When I was a kid The church I grew up in did a big passion play every year. I remember singing and waving huge palm fronds as the man playing Jesus rode down the isle on a donkey. I used to run up the isle with all the other kids yelling, "Jesus, Jesus!", to have the man playing Jesus say “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” (Matt. 19:14). I remember how much joy I had being there in that moment sitting at his feet knowing that we were chosen and loved.
Today I was reminded that I am still chosen and loved. I can still run to him yelling, "Jesus, Jesus!" and when people try to hold me back or discourage me he will still answer them, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”
Several years ago I wrote a poem that with the help of a friend was turned into a song:
To be a child when you walked the earth, what would my eyes have seen?
The comfort of your simple touch, your words making dead people live
Looking into your face not knowing all you'd do for me
To walk beside you and sit at your feet as you spoke your fathers words.
Then to see your body hanging there. Giving your final breath to save the world.
You saw me stand in front of you. Knowing all that I would to, to break your heart and bring you joy.
Then looking past all my sin and all I would do to mock your name, you knew that I would come to bless the Lord.
The people laughed and they called you names. You were bruised and beaten down.
But looking at you I saw your loving eyes beneath that crown.
You were not angry, you did not fight back, or show your infinite power.
You just kept walking down that road toward your darkest hour.
But in your pain I did not see. You were buying my life and liberty.
You saw me stand in front of you, knowing all that I would to, to break your heart and bring you joy.
Then looking past all my sin you knew that I would come to bless you lord.
Thank you God for sending your Son to save us.
I hope you all take this week to think about everything Jesus went through this week and the upcoming triumph over death for our sins.
Tuesday, March 29, 2011
Dear Uncle Sam, Stop the insanity...or at least help me pay for it.
It's been a while since I have written. Unfortunately the task of writing and searching my brain to remember what I wanted to write at one point has also become something that causes anxiety. Then there is the thought that nothing I write matters anyway so why bother.
The last few weeks have been very difficult for me. I have had to take Xanex on an average of 5 days a week, some days more than once. Things have been so overwhelming to me that I have gone over different ways "to end things", though I could never go through with it. I do have an appointment, after payday, to go to the Dr. and talk about adding a medication along the lines of Welbutrin since my current daily medication, clearly, doesn't seem to be strong enough to deal with the anxiety and depression level I am currently at.
I was able to get approved for a patient assistance program through Pfizor to get my Effexor for free. I am also seeking help through the Community Counseling center which charges based on income. Hopefully I will be able to start counseling there soon.
As mentioned in my last post I applied for disability and as expected for the first application I was denied. Yesterday we met with an attorney to appeal the decision. At some point in the meeting he said I would probably be denied again. This kind of threw me into a tailspin. The thought of being denied again means that it could be a year or more for a hearing. If that happens then it means that it's a year or more before we have a second income and if Aaron passes away before then it leaves me with no income. I cried for most of the appointment, and that was WITH a Xanex. I was absolutely drained by the time I got home and just went to bed. Sometimes going to bed is the easiest way to cope. I can just go to sleep and pretend nothing is happening.
Today I slept till noon. Then this afternoon we will go re apply for food stamps. Here's hoping for more than $16 a month. I called the counseling center again and hopefully I will hear from someone tomorrow to get this ball on a roll.
So that's as much as I can manage to get out today.
The last few weeks have been very difficult for me. I have had to take Xanex on an average of 5 days a week, some days more than once. Things have been so overwhelming to me that I have gone over different ways "to end things", though I could never go through with it. I do have an appointment, after payday, to go to the Dr. and talk about adding a medication along the lines of Welbutrin since my current daily medication, clearly, doesn't seem to be strong enough to deal with the anxiety and depression level I am currently at.
I was able to get approved for a patient assistance program through Pfizor to get my Effexor for free. I am also seeking help through the Community Counseling center which charges based on income. Hopefully I will be able to start counseling there soon.
As mentioned in my last post I applied for disability and as expected for the first application I was denied. Yesterday we met with an attorney to appeal the decision. At some point in the meeting he said I would probably be denied again. This kind of threw me into a tailspin. The thought of being denied again means that it could be a year or more for a hearing. If that happens then it means that it's a year or more before we have a second income and if Aaron passes away before then it leaves me with no income. I cried for most of the appointment, and that was WITH a Xanex. I was absolutely drained by the time I got home and just went to bed. Sometimes going to bed is the easiest way to cope. I can just go to sleep and pretend nothing is happening.
Today I slept till noon. Then this afternoon we will go re apply for food stamps. Here's hoping for more than $16 a month. I called the counseling center again and hopefully I will hear from someone tomorrow to get this ball on a roll.
So that's as much as I can manage to get out today.
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