Well Spouse Journey

Swelling and pain

2010-02-09T05:41:00.000-08:00

While I realize that moving here was not a fix all for all of Chris's medical issues I had a big hope that we would not be getting any more ulcers. Even though he does not have any new ulcers, he does have a couple of spots that are causing burning pain that is keeping him up the past few nights. Although a visual inspection doesn't show anything other then slight discoloration on a few of points. He shows me the areas that bother him. On the ball of the foot, on the arc and one just under the big toe. There are slight darker colors but nothing else. Now his whole foot is swollen.

Down the Rabbit hole

2009-07-24T07:47:00.000-07:00

Wonderland is calling and everything there will be completely foreign to us.

Our plans are moving along. We have begun packing and I try to get a few boxes done everyday. We officially have a date drum roll please......August 10. Dh had been toying with the idea of trying to make it to work for another 2 years. I get what he is trying to do but it won't work. He knows that if we have 2 more years then we get about half his pay. He can support us on half his pay down there. Without it we need to look elsewhere to make up for the lack of income. This means I will be job hunting and Dh will be taking over our homeschool. For simplicity in the move we decided to go with an online virtual school this year-connections Academy.We toyed with the idea of leaving Austin here so he can go to his beloved Rock Show in September. His grandparents would take good care of him. In the end it was decided he needed to be with us as a family because we are moving as a family.

We have been getting updates from family as to what is happening on the property. The property has been virtually empty for years. Dh's father has gone down there about every other year to make sure the main upkeep is taken care of. But visiting and fixing things that you see need mending and living there and seeing things that need mending are two entirely different things. We had to hire someone to clear the property up a bit mostly just by all the buildings. Then we had a new well dug. We have a couple of them out there but they are only 200 ft. and have alot of iron in the. Plus I think only one still has a pump. Anyway our new well is 400ft. We also needed to put about 4 inches of dirt down, level it and compact it for the house site. Then it was ready for the House. Dh's relatives have been down there taking pic's of the progress for us. NOW have to figure out how to get them out of my email to my computer and I will share them with you. It seems all the changes after 20+ years caused much excitement down there. Everyone is coming down to our property to check out what we are doing. We got a great modular home, its simply gorgeous and has the added benefit of being on one level so it will be easy for Dh to navigate the entire home as opposed to just the upstairs that he can now. We are supposed to be getting a ramp for a wheelchair just in case. The house was put on the property last week. Again everyone went down and peeked in my windows. They all approved of our choice.

We are aware that our lives will be very different from what we are used to but that may not be a bad thing. We will definitely be growing as much of our food as we can. We do have two huge fields for just that purpose. I'm not sure all what we will grow but I will be sharing as we go.We will have chickens for eggs, a cow for milk, butter and cream, various animals for meat. I will be canning and although I have done that it was only that one time so there will still be lots to learn. We will take someone else's hard work from generations past and bring it up to speed to the modern world. One thing I am truly excited about is the possibility of living off the grid. Wouldn't that be awesome? Well we can daydream or we can get ready and that involves more packing and less computer time.

We have rented out both our houses here and it looks as if one may purchase in a year. We will see what happens. In the meantime dh has gotten diabetic shoes. He calls them old man shoes but looks fairly normal in them. Much better then when he is wearing those ugly hospital shoes. They are pretty dirty and there is no good way to clean them. Dh also got a walker. It is sleek and nice. There is a basket and a seat for you to take a break and really big wheels. He hasn't used it yet and I don't anticipate him doing so. I think it is a pride thing and he needs to be the one to use it.He has worn the diabetic shoes and was not so impressed. I think he needs to break them in.

It came off

2009-06-12T07:28:00.001-07:00

In a attempt to see if moving to a warmer climate will help dh's health issues we went to South Carolina for three weeks. One week driving there and back and two weeks actually there. Last year early in our diagnosis and health issues and before any amputations we went to South Carolina. One of his fingers had an ulcer although it wasn't as far gone as the ones we have now. But that finger was all healed when we returned. We wanted to know if it was a fluke.

We arrived and spent some time with distant cousin's of dh. Said cousin has a friend that is a pastor. Said pastor came over and prayed over dh. The very next day dh and I have a conversation something like this.

DH: The skin on my toe came off.
Me: HUH? What do you mean?
Dh: It came off
Me: Huh? what do you mean it came off
Dh: (rolling his eyes by this time, although he is used to my craziness) It. Came. Off. The skin came off and it was pink underneath
Me: Show me
Dh takes off his wrapping and shows me his toe. It was nice and pink. Then he shows me the skin. It was like a scab and it had shades of green and black. Not pretty and I saved it. I figure I frame it and write something like "miracles really do happen" on the frame or something. I looked at dh and said
Me: You better be thanking God right now.

I most certainly did. I said a small prayer and am still astounded. We were going to amputate half a leg and now we have hope that it may not be necessary after all.

Dh: You know what this means right?
Me: Yup, sigh, I know

Dh wants to move to the sticks. I mean the STICKS. Dh's family has some 50 acres in a one horse town. Ok mabey two horses. We looked at modular homes as the home on the property burned down a few years ago. My Oh my how have these homes improved from what I remember of them. We picked this four bed/two bath 2300 sq ft. home. The kitchen is huge with a gorgeous island in the middle. There is a computer room which will house our homeschool. There is a family room and a living room with a wood burning fireplace. Wood burning? Modular homes have come sooo far. It also has a decent sized laundry and a sliding back door. Eventually perhaps we will build our dream home somewhere on the property. At any rate due to the frugal cost I am sure our plans of living debt free will be much more attainable in a much faster rate. I will miss my family very much but am hoping to come back to visit once a year.

We came back and Austin had a orthodontist appointment. He got new bands and chose red and blue. He said now I have red, white and blue for the holiday. He is so goofy. Dh went to get a check up with the doc and doc was amazed at the improvement. All the nurses and his assistant asked dh why he came back. We have a house to sell people. And it is so very not ready. So much to do. I will be checking up on all my blogs to see what everyone has been up to. I missed you guys.

Next.....

2009-04-08T21:14:00.000-07:00

The decision has been made for DH not to get the vein bypass surgery and instead we are going ahead and having his toe amputated. See this is exactly what I was afraid of. I truly felt like I overreacted when I broke down after DH had his finger amputated. I am sure some thought gesh it's only a finger. But it's a finger and my initial thought was to where this would stop. So it has happened and now we are on to a toe. Again it's only a toe. And again it's a toe!

I wonder just how much DH is taking in. He has such a wonderful attitude about it. He makes jokes and such but then those make me wonder. I wonder if he is masking his true feelings and how that may affect him in the future. He is seeing a shrink, after the amputation they made an appointment for him. I so desperately wish I could find something to make him better or lessen his pain.

A few friends have offered to watch the kids or bring us a meal. they are also praying for us. It truly warms my heart at their warm thoughts and kind deeds. Easter is also this weekend and I wanted to make a traditional meal but now I am unsure I will be up for it. I suppose I will have to do it cause of the kids, I hate to disappoint them.

I am having a terribly emotional week.

Vanessa

Disability and Second opinions

2009-02-02T06:56:00.000-08:00

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.

As the world turns

2009-01-24T07:39:00.000-08:00

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

Amputation

2008-12-05T15:30:00.000-08:00

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.

Vanessa

Intense Pain

2008-12-02T07:27:00.000-08:00

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.

Vanessa

Hope

2008-11-21T14:39:00.001-08:00

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

Vanessa

Testing

2008-11-17T08:04:00.000-08:00

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.

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

One month

2008-11-14T06:34:00.000-08:00

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.

Vanessa

What Buerger's looks like

2008-11-10T12:34:00.001-08:00

This is a bit gross but I am doing this to see if his ulcers get better over time. I finally talked him into taking pictures to document and see the progress. NO more guesswork if his finger or toe is looking better. Without further ado here here are the pictures of my dh's finger and toe.

This is a front view because we wanted to catch the amount of swelling his finger is having and if it is getting better. The black part on the forefinger side is what is an ulcer and what they are unsure of if it is gangrene. He still has feeling in this finger so I tend to think it's not gangrene. Isn't gangrene that part is dead. If it is dead you wouldn't be able to feel it, right?

Here is a closeup of the ulcer. The doctors have been having him put iodine on this part to dry out the dead skin and let the skin underneath grow. As you can see it's not all that nice. Two things to note here. One is there seems to be a chuck missing on the front of his finger and that the swelling seems to stop at the knuckle before the ulcer. Can you see why my hubs may be in some serious pain here?
This is his toe. Doctors are not quite as concerned about this as it isn't black. It is causing a discomfort, itching and shooting pain but overall at the moment his finger seems to be bothering him more. I can see why they don't want him walking on this all that much.
Here is an overall shot of hubbs foot. Can you see the ulcer on the third toe? His other skin seems to be drying out as well.

We didn't take pictures of the one on the ball of his foot as it does seem visibly much better and on the way out the door.

Vanessa

Handicap

2008-11-08T06:43:00.000-08:00

It is truly amazing at how we say "how cool it would be to have this or that", some obscure sort of thing that sounds neat but really isn't once you have it. The handicap license plate or hanger that goes on your mirror is just one of those things some people occasionally say Hmm wouldn't that be nice. You'd be able to park near the entrance and be only steps away. You wouldn't drive for 20 min. trying to find a parking place..... you get the idea.

Thursday dh had to visit the wound care clinic. There are two wound care clinic's in our area. We had been trying valiantly through the V.A. to get approval to go to one of them that was "the better one" according to doctors. We have been turned down 5 times now. The lady at the clinic was very apologetic as she said she had verbal approval but dh got word that it is not approved after all and we would be on our own if he went. This clinic also didn't take our insurance but the other less approved clinic did so that is where we are at now. Dh really feels the clinic helps at leas the good one. Thursday was his first visit to the "not as good" clinic. They looked at his toe and finger. Now his finger has been doing much better lately since he had been visiting the good clinic. This has made us both very hopeful. So three different doctors "needed" to look at his ulcers and each time they wrapped him back up so when the next doctor would come in and want a peak they would have to unwrap him again. This sounds ok right? Except that they use iodine and these particular nurses didn't let it dry before wrapping the gauze around his finger so the gauze stuck to his finger. This led to some ripping of already very sensitive skin. Needless to say it wasn't pleasant and he was feeling the pain when he came home.

Also he passed a sort of milestone that day. For a while now the doctor's have been trying to talk him into getting a handicap license. He, feeling there were people out there that needed that much more then him turned it down for about a month or two now. This time however due to the fact that he realizes that when he doesn't walk alot his ulcer on the ball of his foot was getting better, he chose to let them give him the license. Well he actually got the hanger that you put on your rear view mirror.

He came home all jokes and look how cool we can park so close now. This went on for some time and then I looked him in the eye and said "how are you really handling this?". He saw I really wanted a honest answer and told me "well it sort of sucks being 33 and having a handicap license". He isn't as happy about it as it would first seem. I remember not too long ago(about two months or so) he purchased a cane so he could relieve his foot from as much pressure as possible. He did the same joke bit and the whole family joined in at how cool dad looks and maybe he should get coordinating outfit and we all had a good laugh. mostly he started these or the kids did. I noticed he didn't take it to work with him and asked about that. He said something along the lines of if his boss saw that he would turn into a liability and he was worried what that would do to his job. Another week went and I asked about it again and just flat out asked "are you embarrassed about the cane?". In all seriousness I could see the hurt in his eyes, the questions of how far this thing will go and of course I saw how worried he was at the opinions of myself and others around him. Would we look at him as less of a person and the provider or our family. That was a powerful moment. He turned visibly upset and said " yeah it sucks I don't like looking like this and having people judge me". He also seemed to somehow link this with how much of a man he is or at least how much of a man everyone else thinks he is.

I was supposed to attend a class with a friend on herbal remedies and such and I stayed home to be with him. He didn't say it but I felt I needed to be there.

Vanessa

The Beginning...I just didn't know it

2008-11-06T20:53:00.000-08:00

About a year ago my husband got a sore on one of his fingers on his left hand. I say about a year ago because at the time it didn't seem like it was going to be this crazy hiccup in my life. It just seemed like my hubby had a sore. Then it wouldn't go away. For months. He had also been having Raynaud's type symptoms where you get blue or white finger tips when you are cold. This wasn't all that surprising since his mom has the same thing.

The sore didn't go away and he started to experience pain. Fast forward to June and we went on Vacation in South Carolina. The weather was sunny and warm and we had a blast. The thing that struck us the most was that his sore went away. I just shrugged this off with a sort of hmmm well he is all better now. I honestly didn't think anything else and I don't think that I was in denial. I just thought he got an infection and it healed.

We came back from vacation and in August he got a sore on the third toe on his right foot. He went back to the doctor. They refereed him to several specialist. All these specialist didn't have any clue and just referred him to another specialist. We got very disgruntled with the V.A. and the doctors so we went through our Insurance doctor. The first thing he said was that we should be prepared to loose the digit. Wait now it's a digit you can't even call it a toe? Really. Anyway one day dh(dear husband) was at work and was talking to a doctor that works there. After talking to dh for about 30 minutes and looking at his sore he said that dh had Buerger's disease. Dh looked it up on the net and found that he had all the symptoms and all the signs or markers or whatever to stipulate he had this disease.

He continued to go to his doctors, through the V.A. and they were like oh yeah that is what you probably have. Ummmm hello what am I paying you for? Ok so you don't pay the V.A but that is not the point here. These guys went to college for medicine. Isn't a bit outrageous to diagnose yourself when you have never been to college for medicine? Ok that is a whole nother post.
What is Buerger's disease? Well it's strongly linked to smoking, ALOT. Essentially you can get this if you smoke alot and what happens is you get Raynaud's and then the sores. The sores are actually called ulcers, who would've known. If you don't quit smoking you have an 80% chance of loosing a digit. If you do quit then that is reduce to 30%.

Dh had quit smoking March of 2007 so it has been about a year and a half. But apparently he still had a few here and there. Since we were dating he knew I didn't really like his smoking habit so he didn't smoke around me all that much. Plus since I didn't like the habit I didn't pay all that much attention to how much he did smoke. Bad choice on my part because I don't feel he smoked that much but apparently he did and I am wrong. Upon hearing that he may loose a digit if he continues to have a cigarette here and there he decided that he would not do that and also let anyone know not to smoke around him, please. Second hand smoke can have the same effect on him and have him loose a digit as well. Everyone was fine with it and understood why.
September brought another ulcer on a finger. Then one on the ball of his foot as well. This was very discouraging.

Now we had traveled a road where we knew something was wrong but didn't know what. Now we think we know what he has but there is no cure. Although Buerger's disease is not terminal it is life shortening in most cases. FANTASTIC. What did this all mean to us? What did that mean for my children, for us growing old together, for our grandchildren that will come one day looong long time from now? I was at a loss. Actually I was in denial. I stuck my head in the water and pretended not to care or be very very angry at my husband. Why would I be so angry at him? I knew I was angry but I couldn't see the source of the problem, I was too close to see it. I did figure out the problem, you know those stages it's like denial is first then anger then acceptance then oh I don't remember them all, I am only human after all. I was in denial and I was trying to distance myself from my dh so that I won't hurt or anything.

I had hinted to my friends that dh was having some problems but I was so blase about the whole thing I'm sure no one thought anything of it. One day a friend asked what is up with your husband? I guess I made too many references. This was after we found what we think he has and so I told her the gist. Sometimes I wish I could take it back or at least I did at first not really now though. Then it became a real thing. Something I had to face and look in the eye and say "yup it's happening to me". Don't be disillusioned. When someone gets a bad medical diagnosis like this or worse, their spouses might as well have it too. It is something that is for sure happening to them as well. Perhaps not the symptoms and extenuating circumstances but they are living with it day in and day out. They see it in the morning, at night, in the middle of the night. They see it everywhere. They feel it everywhere.It's in the tiny things like waking up and seeing your spouse look like they haven't slept(cause they haven't) and them in pain to the bigger things like how you are going to pay for all the medical care involved in a chronic illness. They feel it in the things that the "sick spouse" can no longer do so they must then do. It smacks them in the forehead and says here I am in a mocking tone.

After telling my friend I told a few other souls and boy oh boy, I wished I hadn't. I had to face it and the ramifications that surrounded it. I was angry, so very angry. I also cried at the dumbest things. Here is a great example. For Halloween our Church was participating in the Great pumpkin chase. This is a scavenger hunt around the city where teams have to go to 10 stations and do weird things. It's fun. I was supposed to help man a station. I get in my car and I head to the station and I just start crying. I was so angry and scared. I was stopped at a red light and momentarily a thought came into my mind. What if I just pull my car into traffic, bam no more me. Then I thought that's nuts and wrong. No way I could do that to my family. Plus it scared me that thought came to my head. I felt I was going crazy. I was being mean to my husband and my friends and I honestly didn't give a crap. Why didn't I care, what was wrong with me. On and on it went. I was mad , then felt guilty for being mad and then mad again. I was raw from having to face the fact that my husband was very sick and the future was uncertain. I did make it to my station where I was quite mean to the other helpers. These wonderful women, awesome women of god, were talking to me and I told them(they did ask, it wasn't like I spill my guts to everyone) what was going on and they made me feel ok about it. They listened and told me their take and let me cry for about 45 minutes at the unfairness of the world. They hugged me and told me they would pray for me. They made me feel ok. It was a good moment. Unfortunately I had to go back to my real life. I came back rejuvenated till I saw my husband and he was hobbling or wincing in pain or something . I rolled my eyes and said"whatever" and was angry all over again. I was really mad that he could do this to me. How dare he screw up my life, it was doing just fine thank you very much. Why did he have to smoke so young and continue to smoke? Why did his parents let him continue to smoke after they found out he did ? On and on the why's they went.

One night we finally were able to talk, really talk. I let him know all my feelings and he did the same. It was a turning point. I stopped being angry. It was great because to be honest I was feeling like I was such a horrid person for being so mad all the time and so horrible to people especially my dh. I felt like scum. I also started to think i was depressed, that one still lurks a bit. The thing is that very early in our marriage dh started to drink. This was okay at the time, until it became not okay. He was an alcoholic for about 3 yrs, the same 3 yrs he was in the military. Our life became horrid and I really had moments when I hated what alcohol did to him. I didn't leave him because I still loved him. He was under there somewhere and I wanted to find him and pull him out. Then came a moment when our children where in danger under his care and I left. That was his turning point, he went to a detox facility and got "dry". He begged me to come back and after some marriage counseling we slowly put the pieces back together. His illness has brought about some very familiar feelings and I can't help but remember that time. That may have been some of my anger because when you are drunk you don't really care how miserable everyone else is. Dh doesn't understand this but that is okay because I am the one that needs to deal with that. Our talk helped us understand each other and reach each other. Dh saw why I was so mad and understood and I understood better what was happening with him. Dare I say we grew closer but that is exactly what I think has happened.

This is where we are now. Accepting and moving forward. This is my life and so many others out there. I hope that this reaches those that understand, please feel free to leave an email if you don't feel comfortable leaving a comment. Mabey I can help or vice versa. To all you Well Spouses out there I hope this is a place of compassion and understanding that you desperatly need.

Vanessa