Dh went to our private Doctor, through insurance, and updated him about what all was happening. We try to keep this doctor in the loop because he has been so good to us. When we had problems with our insurance paying for a medication he gave us enough samples to last a week and we were able to see if it worked. Anyway the doctors are still surprised dh is still working and this doctor is no different. He thinks that the toe will need to be amputated and that dh needs to get going on Social Security.
This is the cross roads isn't it? This will change our lives for sure. Well ok the disease has changed our lives in minute ways across the board but dh being disabled for the rest of his life when he is just now 33 that is life altering right. Not to mention that I would have to go out there and make up whatever we loose in income due to this change. How will I continue to homeschool the boys if I am working outside of the home. I enjoy being with my kids. Yes they can be trying at times, alot of times, but all in all I recognize I only have a little time with them so I am trying to enjoy it while I can. Now I realize that dh has already re submitted his case to the V.A. to see if he can get his disability upped but we have no idea when they will come back with an answer and what type of answer they will give.
I think the worst part about all of this is the being in limbo, kwim? It's the not being able to plan your life because you aren't sure how long things will be the way they are. I suppose this is the part where I give some great notion that I have finally learned to live in the moment. But I am a mom to three boys that are homeschooled. If I don't plan some part of my life homeschool and the house would be in chaos. There needs to be a certain amount of planning you need to do even if it is based on the ideas that you think will happen. Not to mention what will dh do if he is home for the rest of his life? Will it make him worse? Have you ever heard of people being in good health till they retired and then they started getting sick after they retired. This is what I worry about. Dh is not in the best of health to begin with what happens if being able to go to work and have that distraction and need of you is what is keeping him from getting that much worse?
Then there are all the little ways in which I know he is holding on to the notion that he needs to put on that brave face. I see him all day during weekends shudder throughout the day. I know it is a jolt of pain going through him. The cold weather has become a real issue as well and he truly does avoid it at all costs. Including not going to the door of a friends house when picking up one of our boys. It was too cold out so he sent one of the other boys. I explained it to my friend and I hope she understands that dh was not trying to be unsocial or rude. I can see him concentrate from moment to moment and I can tell he is trying to deal with his chronic pain.
Dh has made an appointment with another surgeon to get a second opinion on whether he needs the bypass surgery on his legs to improve the circulation in his right leg. I hope that I can go with him to the appointment.
Monday, February 2, 2009
Saturday, January 24, 2009
As the world turns
I feel like I have stepped into some sort of soap opera. I don't like drama one bit. I have a friend who has alot of drama and well I just cringe at seeing her number on my phone knowing full well I will be on it for an hour listening to the latest and greatest. I would be so happy with a boring life where nothing ever happens. Alas that is not what was intended for me and I have seen some things about myself that I do not like and others that I didn't realize I had and did like.
Hubs is doing better. After getting the amputation he has been sleeping better and in quite a bit less pain. Although I still think it is gross that he brought the finger home. I was so grateful that he was finally getting some rest that when he started getting less sleep I noticed. Now his toe is acting up. It looks as if half of the tip is gone on one side and looks all yellow and white like it has been soaking in water. The doctors want to do an bypass operation on his legs where they harvest veins from one to put into the other to improve circulation. This was told to us with the toe in mind. The doctor feels if it were to become necessary to amputate the toe that dh would not have enough circulation to let it heel and therefore they may need to take the entire foot. So that means they are doing the surgery in hopes of saving his foot but not necessarily his toe. I hope that made sense because the first time dh told me all this I had to have him explain it 3 different times. I wish I had gone to the appointment.
Dh doesn't want to have the surgery which adds even more drama. I mean why not they are talking about saving his foot. He hates the idea of the "cutting on him". His words. I get that it is scary but if someone told me that it could possibly save my foot I would do it. He is also concerned because he would have to stay at the hospital for a week and at home for about 3 weeks. He only has at most 3 weeks leave. I should say paid leave. He could take the whole month but for one week he would not be paid. I figured it out to be at about $1000 short on our pay. We have that in savings and well that is what savings is for right? Even if I had to charge our credit cards to make it up I would still be willing to do it in the hopes that he wouldn't have to loose his whole foot. kwim? The surgery was supposed to be done in January. Yup this month but dh has procrastinated the whole thing. The longer we put it off the more I look at my calendar and I count if he has the surgery this day he would be on a sort of bed rest till this day. And here is the part that comes out of me where I feel totally selfish about it. Our anniversary is in March and if he continues putting the surgery off I bet you anything that he would be on " bed rest" during our anniversary. It'll be 15 yrs this year so I really wanted to celebrate a bit. As it dawns closer I need only to wait and see what will happen . The bottom line is that I just want him around even if he is going to be missing a few body parts.
He has also started seeing a psychologist. The V.A. signed him up due to the amputation. The doc thinks hubs is depressed so he now also takes some antidepressant among the other wonderful meds he is taking. I swear my bathroom is being overtaken by meds and herbal remedies galore. They are everywhere and I had to get him baskets because it was driving me nuts having to make a gazillion trips to clear the counter so I could clean it. I suppose it is sort of humorous.
Dh has also come up with all sorts of elaborate stories to tell our grandchildren about his finger. He has had me rolling several times about the stories he comes up with. One would be he got into a fight with a shark and the shark bit it off. Another was he was picking his nose as a child and it got stuck up there so they had to cut it off. That one would be told as we see a grandchild picking their nose. I wonder if that would scare the crap out of them and make them cry. We may need to rethink that one. Another involved pointing the finger at someone else as doing said crime. This came about at our frustration that no one ever does anything in our house. When someone drinks the last bit of tea "no one did it". I suppose it's all in good fun but part of me watches dh to make sure he is okay.
A week ago or so dh came home with flu like symptoms. He went straight to bed and stayed there till the next day. Then he was fine. We talked about it and he thought it was due to the fact that he wasn't getting enough sleep....again. He did this a few months ago where he got really sick feeling for a day and layed down and slept for about a day and was fine after. So if I see him sleep I leave him alone. Even for church I feel horrid waking him because he simply isn't getting the amount of sleep he needs.
That's about it for our craziness. I hope your New Year is doing good.
Vanessa
Hubs is doing better. After getting the amputation he has been sleeping better and in quite a bit less pain. Although I still think it is gross that he brought the finger home. I was so grateful that he was finally getting some rest that when he started getting less sleep I noticed. Now his toe is acting up. It looks as if half of the tip is gone on one side and looks all yellow and white like it has been soaking in water. The doctors want to do an bypass operation on his legs where they harvest veins from one to put into the other to improve circulation. This was told to us with the toe in mind. The doctor feels if it were to become necessary to amputate the toe that dh would not have enough circulation to let it heel and therefore they may need to take the entire foot. So that means they are doing the surgery in hopes of saving his foot but not necessarily his toe. I hope that made sense because the first time dh told me all this I had to have him explain it 3 different times. I wish I had gone to the appointment.
Dh doesn't want to have the surgery which adds even more drama. I mean why not they are talking about saving his foot. He hates the idea of the "cutting on him". His words. I get that it is scary but if someone told me that it could possibly save my foot I would do it. He is also concerned because he would have to stay at the hospital for a week and at home for about 3 weeks. He only has at most 3 weeks leave. I should say paid leave. He could take the whole month but for one week he would not be paid. I figured it out to be at about $1000 short on our pay. We have that in savings and well that is what savings is for right? Even if I had to charge our credit cards to make it up I would still be willing to do it in the hopes that he wouldn't have to loose his whole foot. kwim? The surgery was supposed to be done in January. Yup this month but dh has procrastinated the whole thing. The longer we put it off the more I look at my calendar and I count if he has the surgery this day he would be on a sort of bed rest till this day. And here is the part that comes out of me where I feel totally selfish about it. Our anniversary is in March and if he continues putting the surgery off I bet you anything that he would be on " bed rest" during our anniversary. It'll be 15 yrs this year so I really wanted to celebrate a bit. As it dawns closer I need only to wait and see what will happen . The bottom line is that I just want him around even if he is going to be missing a few body parts.
He has also started seeing a psychologist. The V.A. signed him up due to the amputation. The doc thinks hubs is depressed so he now also takes some antidepressant among the other wonderful meds he is taking. I swear my bathroom is being overtaken by meds and herbal remedies galore. They are everywhere and I had to get him baskets because it was driving me nuts having to make a gazillion trips to clear the counter so I could clean it. I suppose it is sort of humorous.
Dh has also come up with all sorts of elaborate stories to tell our grandchildren about his finger. He has had me rolling several times about the stories he comes up with. One would be he got into a fight with a shark and the shark bit it off. Another was he was picking his nose as a child and it got stuck up there so they had to cut it off. That one would be told as we see a grandchild picking their nose. I wonder if that would scare the crap out of them and make them cry. We may need to rethink that one. Another involved pointing the finger at someone else as doing said crime. This came about at our frustration that no one ever does anything in our house. When someone drinks the last bit of tea "no one did it". I suppose it's all in good fun but part of me watches dh to make sure he is okay.
A week ago or so dh came home with flu like symptoms. He went straight to bed and stayed there till the next day. Then he was fine. We talked about it and he thought it was due to the fact that he wasn't getting enough sleep....again. He did this a few months ago where he got really sick feeling for a day and layed down and slept for about a day and was fine after. So if I see him sleep I leave him alone. Even for church I feel horrid waking him because he simply isn't getting the amount of sleep he needs.
That's about it for our craziness. I hope your New Year is doing good.
Vanessa
Friday, December 5, 2008
Amputation
I guess you can guess what this post is about. On Thursday Chris went to see another specialist. This one was to give him another opinion as to his finger, he is the best plastic surgeon in the area. At first he had a mid morning appointment but they had an opening earlier so I got a call at 8:30. Chris said they moved his appointment up and he would be seen soon. He called a bit later before 9 and said that they would cut his finger then and there. I couldn't believe it. I had said to this point that the doctors wanted to amputate but we were seeking alternatives. We were seeing an herbalist to get toxins out of his body. Chris had said they are going to cut it for at least a week. Do you see the difference in frame of mind here?
I say they want to but we are trying other ways first
Chris says they are going to (implication just a matter of when)
I hadn't come to terms with the reality that was staring at us. Chris had.
I really wanted to go over there to be with him but he insisted on me staying home. Maybe because he knows how squeamish I am or maybe because he didn't want the kids there as well I don't know but my feelings were definitely hurt. I wanted to be there for him for him to know he can count on me. So about 10:30 ish Chris calls back to let me know he was done. Just like that he had had his finger amputated. They didn't take it all but left about a quarter of it. Chris stayed awake during the procedure which didn't really last all that long considering. He watched and heard the whole thing and explained it like clipping your toenails. He stopped off at the V.A. to get more medication. The doctor did say that he would experience some pain in the days to come but it may actually be less then what he had been going through for months now. I am glad of that for sure. It seems like he was going through so much pain and all I could do was sit idly by and watch.
He came home close to lunch. He brought his finger with him. I have not and have no need or want to look at it thank you. I think I would hurl. He had a few ideas on it. One was to put a pack of cigarettes on it with a no smoking sign. That was by far my favorite. The kids seem to think it would be a great conversation starter. I think it would not. So no it will not go onto the living room table. Chris finally managed a look at it and said that the black reached his bone so he is glad that he had the amputation because the last thing we need is gangrene in his bloodstream or his bones. That would be a worse situation then loosing a finger. No way am I looking at it. It was attached to Chris only a yesterday and I'm so squeamish. The boys showed their friend who was rightly grossed out.
Today I took the kids to their co-op. Two people knew what had happened and during lunch with no sort of warning and no one saying anything to me I broke into tears. I felt so dumb and embarrassed. I mean these people don't know what is going on and here I break into tears? I excused myself to go to the bathroom and straighten up.My friend Randi came over to me and told me I didn't need to hold it together and that she wanted to make sure I was okay. Then she did such a wonderful kind and generous thing She prayed with me. Another friend came by and we prayed for a bit. It was so nice, comforting and well I'm not sure how to describe it. Let's just say I have an great appreciation for my friends. I still don't know why I cried and am still a bit embarrassed but I guess it's okay now. I think and hope anyway.
The kids seem to be handling all this very well much better then me for sure. Perhaps kids are as resilient as the doctors always say whatever the reason for now I am happy they are not upset by this. I do think though that they will think twice about smoking. At least I hope so.
I say they want to but we are trying other ways first
Chris says they are going to (implication just a matter of when)
I hadn't come to terms with the reality that was staring at us. Chris had.
I really wanted to go over there to be with him but he insisted on me staying home. Maybe because he knows how squeamish I am or maybe because he didn't want the kids there as well I don't know but my feelings were definitely hurt. I wanted to be there for him for him to know he can count on me. So about 10:30 ish Chris calls back to let me know he was done. Just like that he had had his finger amputated. They didn't take it all but left about a quarter of it. Chris stayed awake during the procedure which didn't really last all that long considering. He watched and heard the whole thing and explained it like clipping your toenails. He stopped off at the V.A. to get more medication. The doctor did say that he would experience some pain in the days to come but it may actually be less then what he had been going through for months now. I am glad of that for sure. It seems like he was going through so much pain and all I could do was sit idly by and watch.
He came home close to lunch. He brought his finger with him. I have not and have no need or want to look at it thank you. I think I would hurl. He had a few ideas on it. One was to put a pack of cigarettes on it with a no smoking sign. That was by far my favorite. The kids seem to think it would be a great conversation starter. I think it would not. So no it will not go onto the living room table. Chris finally managed a look at it and said that the black reached his bone so he is glad that he had the amputation because the last thing we need is gangrene in his bloodstream or his bones. That would be a worse situation then loosing a finger. No way am I looking at it. It was attached to Chris only a yesterday and I'm so squeamish. The boys showed their friend who was rightly grossed out.
Today I took the kids to their co-op. Two people knew what had happened and during lunch with no sort of warning and no one saying anything to me I broke into tears. I felt so dumb and embarrassed. I mean these people don't know what is going on and here I break into tears? I excused myself to go to the bathroom and straighten up.My friend Randi came over to me and told me I didn't need to hold it together and that she wanted to make sure I was okay. Then she did such a wonderful kind and generous thing She prayed with me. Another friend came by and we prayed for a bit. It was so nice, comforting and well I'm not sure how to describe it. Let's just say I have an great appreciation for my friends. I still don't know why I cried and am still a bit embarrassed but I guess it's okay now. I think and hope anyway.
The kids seem to be handling all this very well much better then me for sure. Perhaps kids are as resilient as the doctors always say whatever the reason for now I am happy they are not upset by this. I do think though that they will think twice about smoking. At least I hope so.
Vanessa
Tuesday, December 2, 2008
Intense Pain
All night long dh had intense pain. It kept him up all night and put him in tears and trust me that doesn't happen often. I feel so helpless just sitting there watching. I rubbed his back for a while but other then that there was nothing I could do.ON top of that he thinks he may be coming down with the flu and he has been on antibiotics for over a month. He had the chills all night which made him miserable then he would get overheated. And he threw up, alot. I dozed a bit when he did manage to get a bit of sleep and I got up to it again about 4 in the morning.
We have been seeing an herbalist over the past week. She uses a blue light on his ulcers and has added to his growing pill bottle collection. Luckily this is all natrual stuff so I am not as worried that he is so heavily bedicated. We are unsure if this will work but I am certainly willing to try. Chris on the other hand has stated he is willing to try but then he gets there and he makes these little signs and says these little things under his breath and well it makes me wonder how much he is really willing to try. I hope to update the list of meds he is on in the hope that perhaps someone else may get use out of it.
Lastly dh and I have had to seriously think about amputation. We have had more than enough doctors tell us so and dh is in so much pain that he seems more willing just to make it stop. My question is will it make it stop? We were supposed to get an appointment with the hand surgeon yesterday but their computers were down so perhaps today we will get the appointment and I tell you what I am going with him. I am tired of asking him questions when he gets back from these appointments and he doesn't have the answers because God forbid he ask questions.
Anyway that is where we are for now. I sure hope you guys had a great holiday.
We have been seeing an herbalist over the past week. She uses a blue light on his ulcers and has added to his growing pill bottle collection. Luckily this is all natrual stuff so I am not as worried that he is so heavily bedicated. We are unsure if this will work but I am certainly willing to try. Chris on the other hand has stated he is willing to try but then he gets there and he makes these little signs and says these little things under his breath and well it makes me wonder how much he is really willing to try. I hope to update the list of meds he is on in the hope that perhaps someone else may get use out of it.
Lastly dh and I have had to seriously think about amputation. We have had more than enough doctors tell us so and dh is in so much pain that he seems more willing just to make it stop. My question is will it make it stop? We were supposed to get an appointment with the hand surgeon yesterday but their computers were down so perhaps today we will get the appointment and I tell you what I am going with him. I am tired of asking him questions when he gets back from these appointments and he doesn't have the answers because God forbid he ask questions.
Anyway that is where we are for now. I sure hope you guys had a great holiday.
Vanessa
Friday, November 21, 2008
Hope
Dh went to see yet another specialist. Honestly I should keep better track of this but somehow the names of these doctors just don't seem all that important to me especially if we only see them once as is the case here. He had got the test for blood pressure on all his digits and went back for the results as the techs aren't allowed to say. This doctor told us the same thing we already knew which is dh get very little blood to his extremities. Then he told dh that he would give the finger a week not a month before wanting to amputate it. Seriously? One week. This upset dh understandably so. It also had us at a loss for any hope of the finger as this will be the third doctor to want to amputate. What does all this mean? It is such a significant thing to say. When I tell people my husband has ulcers or he gets cold or he is sick or whatever they really don't get the whole gist of it. If I say well they are considering cutting his finger off then people are like OHHHHH. I'm not trying to be mean or anything it is just how it is. They can't really know unless they live it. Of course I don't think badly of them either its just when someone tells me to keep dh warm I'm like "ummmm thanks?(dripping with sarcasm)"
For example my dad called the other day and was trying to be helpful. He said things like well keep him warm, put more clothing on, wear gloves ect. I felt like I was on page 50 and he was stuck on page 2. We talked for some time where he gave me more pointers till I finally said "dad they are talking about cutting his finger off" he took a moment and I could tell he didn't realize that it was this bad.
Dh gets very little sleep, honestly I haven't the foggiest how he is walking around on the little sleep he is getting. The intense pain he experiences causes him to stay awake alot. Lately I have taken to letting him sleep all weekend because he is finally sleeping. The bad thing then is he is not being part of the family and we all miss him so much yet he is right here. Its such a weird way to live. I am saddened at how much this has taken from us. We can't walk anywhere, we are stressed all the time, we don't enjoy family things that we used to. Heck we don't even kid around nearly as much as we used to cause he is in pain or asleep it doesn't exactly lead to an terrific evening or day. Its very disheartening.
For a couple of days I was making pumpkin puree. This involves alot of work and there is a part where I squeeze the juice out of the puree with cheesecloth. My hand was starting to hurt and got a bit swelled. I was starting to complain about it to dh but stopped almost as soon as I started because compared to him my pain is nothing. This is how I feel all the time. I feel my problems aren't really problems at all when I think of all that dh is going through so I internalize alot and that has gotten me back to having migraines....ALOT. I don't want to stress my husband out any more then he already is because stress affects this disease as much as the cold weather. He is a fairly laid back guy so I don't think he stresses alot but with this comes alot and I can't phanthom that he isn't stressed to some extend on the things that this disease is affecting. Just the other day I had a problem with a new friend and I didn't feel I could really talk to him because it really felt silly when compared to his issues. I then almost didn't talk to the people I had issues with because again it felt silly so I am projecting this everywhere. I am glad I did though because it cleared the air and I felt so much better after and I also felt my friends understood as well. Anyway that is not what I am talking about here I am just trying to make a point on the fact that I am stressing alot. I am feeling any problems I have don't even come close to the problems dh has so why am I whining. Kwim? I mean really a silly misunderstanding vs getting a finger amputated? hmmm which do you think wins. It's such a lonely place to be.
People are kind in asking about my husband and I appreciate it so much but sometimes I want to scream because really no one seems to realize that I am not okay. I feel myself falling apart. I cry at dumb things say like writing a post on my blog. It's all so overwhelming. Our sensai the other day asked me "how are you?" I felt like hugging him but it didn't feel appropriate. I told him thank you for asking and that I am hanging in there. Not even my own family asks me that. My in laws certainly don't. I guess I am being a bit selfish or am I. I don't know. I think back to a sermon a couple of weeks ago about the self and how to put God first and then others and you went last. At the time it made sense the way our pastor had explained it all but now sitting in that last spot it doesn't feel so good. I must be doing something wrong because it shouldn't feel bad right at least that was the way the pastor had explained it.
I am also tending to not have any drive lately. I mean what the heck is it all for anyway? I mean why should i care if my house is clean all the time? Isn't there more important things going on than that? Or should I try for normalcy, which I have but sometimes I just find myself looking at say cleaning the bathroom or the dishes and I'm like"why" why do I need to do this. What is the point. Day in day out we do the same things because they need to get done. Meanwhile dh is slowly but surely heading down the road to complete disability. I think it's all about hope. Do I still have that picture of dh and I when we are old and grey or did all this make it fuzzy in my mind because now Im not even sure he will be there. I really want him there.
Sorry for the random thoughts but sometimes when I type it just seems to flow and I put it out there and figure I can edit on preview or spell check or something. I think I will leave it though becuase that is why I have put the blog here in the first place for just this sort of thing to get it out of my system if nothing else.
I hope you guys are doing well and enjoy your weekend thanks for stopping by
For example my dad called the other day and was trying to be helpful. He said things like well keep him warm, put more clothing on, wear gloves ect. I felt like I was on page 50 and he was stuck on page 2. We talked for some time where he gave me more pointers till I finally said "dad they are talking about cutting his finger off" he took a moment and I could tell he didn't realize that it was this bad.
Dh gets very little sleep, honestly I haven't the foggiest how he is walking around on the little sleep he is getting. The intense pain he experiences causes him to stay awake alot. Lately I have taken to letting him sleep all weekend because he is finally sleeping. The bad thing then is he is not being part of the family and we all miss him so much yet he is right here. Its such a weird way to live. I am saddened at how much this has taken from us. We can't walk anywhere, we are stressed all the time, we don't enjoy family things that we used to. Heck we don't even kid around nearly as much as we used to cause he is in pain or asleep it doesn't exactly lead to an terrific evening or day. Its very disheartening.
For a couple of days I was making pumpkin puree. This involves alot of work and there is a part where I squeeze the juice out of the puree with cheesecloth. My hand was starting to hurt and got a bit swelled. I was starting to complain about it to dh but stopped almost as soon as I started because compared to him my pain is nothing. This is how I feel all the time. I feel my problems aren't really problems at all when I think of all that dh is going through so I internalize alot and that has gotten me back to having migraines....ALOT. I don't want to stress my husband out any more then he already is because stress affects this disease as much as the cold weather. He is a fairly laid back guy so I don't think he stresses alot but with this comes alot and I can't phanthom that he isn't stressed to some extend on the things that this disease is affecting. Just the other day I had a problem with a new friend and I didn't feel I could really talk to him because it really felt silly when compared to his issues. I then almost didn't talk to the people I had issues with because again it felt silly so I am projecting this everywhere. I am glad I did though because it cleared the air and I felt so much better after and I also felt my friends understood as well. Anyway that is not what I am talking about here I am just trying to make a point on the fact that I am stressing alot. I am feeling any problems I have don't even come close to the problems dh has so why am I whining. Kwim? I mean really a silly misunderstanding vs getting a finger amputated? hmmm which do you think wins. It's such a lonely place to be.
People are kind in asking about my husband and I appreciate it so much but sometimes I want to scream because really no one seems to realize that I am not okay. I feel myself falling apart. I cry at dumb things say like writing a post on my blog. It's all so overwhelming. Our sensai the other day asked me "how are you?" I felt like hugging him but it didn't feel appropriate. I told him thank you for asking and that I am hanging in there. Not even my own family asks me that. My in laws certainly don't. I guess I am being a bit selfish or am I. I don't know. I think back to a sermon a couple of weeks ago about the self and how to put God first and then others and you went last. At the time it made sense the way our pastor had explained it all but now sitting in that last spot it doesn't feel so good. I must be doing something wrong because it shouldn't feel bad right at least that was the way the pastor had explained it.
I am also tending to not have any drive lately. I mean what the heck is it all for anyway? I mean why should i care if my house is clean all the time? Isn't there more important things going on than that? Or should I try for normalcy, which I have but sometimes I just find myself looking at say cleaning the bathroom or the dishes and I'm like"why" why do I need to do this. What is the point. Day in day out we do the same things because they need to get done. Meanwhile dh is slowly but surely heading down the road to complete disability. I think it's all about hope. Do I still have that picture of dh and I when we are old and grey or did all this make it fuzzy in my mind because now Im not even sure he will be there. I really want him there.
Sorry for the random thoughts but sometimes when I type it just seems to flow and I put it out there and figure I can edit on preview or spell check or something. I think I will leave it though becuase that is why I have put the blog here in the first place for just this sort of thing to get it out of my system if nothing else.
I hope you guys are doing well and enjoy your weekend thanks for stopping by
Vanessa
Monday, November 17, 2008
Testing
This week dh is having alot of testing done. He is getting another cat scan one each of his hand and arm, leg and toe and his other arm too. Our co-pay for these tests are $150 per body part so in one day we will accumulate about $500 in medical bills. That is not to say anything of the other appointments dh has this week. I can barely keep track. He is at an appointment right now but he was unsure of what type of testing they wanted to do. He did know they were doing testing though. I think this part aggravates me so because I like to have information and my hubs is a sort of go with the flow person. I am afraid to even see what will happen. Sometimes I which I could charge the doctors for our time. Dh drove about an hour one way just to have pressure cups attached to the ends of his fingers to see the blood pressure. Ok I can see the value in the test, I do really, but he has had this done already. To drive that far for something like that makes me upset. He is not getting much blood to his fingers. Really no kidding(dripping with sarcasm).
Last night he was cleaning up and re bandaging his ulcer on his finger. He came in and said there is puss. What ? In all this time when we thought he had infections in his finger not once did he have puss come out of any of the ulcers. The other thing was that some of his skin came off when he took the old bandage of. A pretty decent sized chunk. I was dismayed to say the least. It is so helpless to not at least be able to help him out. I asked if he pulled the skin off on purpose because I know it is dry and bothering him. He said no it just came off with the gauze. I am scared of not knowing what will happen and all these terrible visions of worst case scenario dance through my head. This has led me to some interesting thoughts.
Last night he was cleaning up and re bandaging his ulcer on his finger. He came in and said there is puss. What ? In all this time when we thought he had infections in his finger not once did he have puss come out of any of the ulcers. The other thing was that some of his skin came off when he took the old bandage of. A pretty decent sized chunk. I was dismayed to say the least. It is so helpless to not at least be able to help him out. I asked if he pulled the skin off on purpose because I know it is dry and bothering him. He said no it just came off with the gauze. I am scared of not knowing what will happen and all these terrible visions of worst case scenario dance through my head. This has led me to some interesting thoughts.
His toe on the other hand seems to be doing better. It has decreased in size and we think we can see some skin under there. I wonder how much we are projecting onto him getting better and are we really seeing that improvement or not. This is the main reason I have begun to take pictures, they don't lie and I can honestly compare one time period to another. Looking at the pictures that I posted I can say that yes his toe does seem to be getting better. I will have to take a picture to show you . Dh was so very happy about it. I could see it in his eyes. I saw tangible hope something he could see and grab onto and hold.
Vanessa
Friday, November 14, 2008
One month
Dh went to the wound care clinic again and the doctor looked at his toe and finger. He said he wasn't that worried about the toe and that he felt it was on it's way to healing. The finger they have been unsure about for a while now. He said he wanted to give it a month and if it still wasn't getting better then he wanted us to think about amputation. He said the swelling that has been happening around his finger is not a good sign.
I did the math and if I am right a month from now would be right before Christmas. Ummm I don't think so. I will not have my holidays ruined for the rest of my life. Here is my thinking. If he does this in a month then for the rest of my life Chris will remember oh it's been five years since they amputated my finger. I don't want that. I don't want those hard feelings or sorrow at that time of year. Call me selfish but I don't. No there is no good time to amputate anything but lets not do it right before Christmas. It would most definitely ruin this and possibly future Christmases.
The fact that we have to think about this seems absurd to me. He can still move it. Why can't we wait and see if it gets better? I mean once it has been amputated that's it it's gone. No going back. No changing your mind and seeing if it will improve after all. Maybe I'm not being realistic. What do you think? I don't know. I don't want this to happen to him. I think of all the worst stuff. Like ruined holidays, phantom pain and even worse then that it won't stop there. I am terrified. How will this affect dh? I mean really not just on the surface as everyone else sees it but underneath there as we who live with him will see it or at least I will. He has said that if this is the worst of it and it will stop there he considers himself lucky. LUCKY really? yes it could be worse this I know.
Just a couple of days ago he got a new prescription. I went to pick it up and the pharmacist said that our insurance didn't cover it. Ok is there a generic brand? Nope this is a fairly new medicine so there is no generic yet. Well how much is it. Are you ready for this a one month supply of my dh new pain medication is $215. My first thought was wow that's alot. My second thought was how my dh had not been sleeping hardly at all because he is in so much pain. So then I'm thinking we need to try the medicine. So I bought a weeks worth and we are asking our Physician for samples and to see if it can be pre-approved. After taking it for about a day and a half he said that his finger didn't seem to burn as much. I still haven't seen all that much improvement in his sleeping though and I am concerned about that as well.
There are so many thoughts going through my head at the moment it seems like overload. Hs'ing has been on the back burner as I just can't seem to concentrate on what I need to do as a result the boys have been very lacking in history and science. Ok not science as every other week they get three hours of it and science is around us all the time anyway. I worry about all the things that dh is feeling or thinking about that he is not telling me so I don't have an even heavier burden. But that is what marriage is I am of course willing to help carry this, we made those vows and I am trying to live them. We do okay financially but with this came so many trips to specialists and so many different meds and all the stuff that surrounds one that is trying to figure out what the heck is wrong that we are feeling ever so stretched that I don't really know what will happen. My savings is so low now that I feel if something went wrong that we would be in serious trouble. I think about what I should take away from all this and right now I can't see it yet. I know that I will learn from this but my thoughts are more centered around How dh is, How we are going to pay for it all, and how this will effect our children and marriage.
Life isn't so rosy at the moment. I have gotten over being angry at the world at it's unfairness. How did that happen? I haven't the foggiest. But I'm over it. I have to think of my husband, our children and how the heck I am going to find the finances to help dh out. I can't be bothered with unfairness. It is what it is and I need to make the best of it. For our children they have been given very basic information. We don't want to keep them in the dark but we also don't want them to worry either. We deal with each situation as it comes. Right now I need to deal with the fact that the holidays are coming full steam ahead and I am not prepared. I will need to make a much smaller budget for the holidays this yr. Austin's birthday is four days after Christmas so I also need to figure that out. In the meantime dh has a bunch of appointments next week with vascular care. They want to do cat scans and I think MRI as well. If they find corkscrew veins then it is just another indication he has Buerger's disease. I wish there was a definitive test but there isn't one.
I am feeling resigned to what we are going through. I can't do anything about it though and that is so helpless. But I can do something about my children's homeschool, I can try and fix our budget a bit to allow more room for the ever expanding medical expenses. I can clean the house and organize. Those things I have control over so I am looking to do these in the near future.
I did the math and if I am right a month from now would be right before Christmas. Ummm I don't think so. I will not have my holidays ruined for the rest of my life. Here is my thinking. If he does this in a month then for the rest of my life Chris will remember oh it's been five years since they amputated my finger. I don't want that. I don't want those hard feelings or sorrow at that time of year. Call me selfish but I don't. No there is no good time to amputate anything but lets not do it right before Christmas. It would most definitely ruin this and possibly future Christmases.
The fact that we have to think about this seems absurd to me. He can still move it. Why can't we wait and see if it gets better? I mean once it has been amputated that's it it's gone. No going back. No changing your mind and seeing if it will improve after all. Maybe I'm not being realistic. What do you think? I don't know. I don't want this to happen to him. I think of all the worst stuff. Like ruined holidays, phantom pain and even worse then that it won't stop there. I am terrified. How will this affect dh? I mean really not just on the surface as everyone else sees it but underneath there as we who live with him will see it or at least I will. He has said that if this is the worst of it and it will stop there he considers himself lucky. LUCKY really? yes it could be worse this I know.
Just a couple of days ago he got a new prescription. I went to pick it up and the pharmacist said that our insurance didn't cover it. Ok is there a generic brand? Nope this is a fairly new medicine so there is no generic yet. Well how much is it. Are you ready for this a one month supply of my dh new pain medication is $215. My first thought was wow that's alot. My second thought was how my dh had not been sleeping hardly at all because he is in so much pain. So then I'm thinking we need to try the medicine. So I bought a weeks worth and we are asking our Physician for samples and to see if it can be pre-approved. After taking it for about a day and a half he said that his finger didn't seem to burn as much. I still haven't seen all that much improvement in his sleeping though and I am concerned about that as well.
There are so many thoughts going through my head at the moment it seems like overload. Hs'ing has been on the back burner as I just can't seem to concentrate on what I need to do as a result the boys have been very lacking in history and science. Ok not science as every other week they get three hours of it and science is around us all the time anyway. I worry about all the things that dh is feeling or thinking about that he is not telling me so I don't have an even heavier burden. But that is what marriage is I am of course willing to help carry this, we made those vows and I am trying to live them. We do okay financially but with this came so many trips to specialists and so many different meds and all the stuff that surrounds one that is trying to figure out what the heck is wrong that we are feeling ever so stretched that I don't really know what will happen. My savings is so low now that I feel if something went wrong that we would be in serious trouble. I think about what I should take away from all this and right now I can't see it yet. I know that I will learn from this but my thoughts are more centered around How dh is, How we are going to pay for it all, and how this will effect our children and marriage.
Life isn't so rosy at the moment. I have gotten over being angry at the world at it's unfairness. How did that happen? I haven't the foggiest. But I'm over it. I have to think of my husband, our children and how the heck I am going to find the finances to help dh out. I can't be bothered with unfairness. It is what it is and I need to make the best of it. For our children they have been given very basic information. We don't want to keep them in the dark but we also don't want them to worry either. We deal with each situation as it comes. Right now I need to deal with the fact that the holidays are coming full steam ahead and I am not prepared. I will need to make a much smaller budget for the holidays this yr. Austin's birthday is four days after Christmas so I also need to figure that out. In the meantime dh has a bunch of appointments next week with vascular care. They want to do cat scans and I think MRI as well. If they find corkscrew veins then it is just another indication he has Buerger's disease. I wish there was a definitive test but there isn't one.
I am feeling resigned to what we are going through. I can't do anything about it though and that is so helpless. But I can do something about my children's homeschool, I can try and fix our budget a bit to allow more room for the ever expanding medical expenses. I can clean the house and organize. Those things I have control over so I am looking to do these in the near future.
Vanessa
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