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

Vanessa

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.

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

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

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

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

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