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
7 comments:
Vanessa I read all the posts on here. You are one brave woman to put yourself out there like this. I cannot imagine going through what you and your dh are experiencing. All your feelings are only natural. We all would feel some anger and unfairness if we were in your shoes. My heart just goes out to you! Remember we all love you!(((((hugs))))
And do keep writing this story. I am going to follow it closely.
Thank you Mrs. D.
It was hard to have a blog about it. It has been very therapeutic and I have managed to work through alot because of it.
I will keep it up.
Vanessa
Although not a "well spouse" (I am a woman with Buerger's Disease/Raynaud's), I wanted to let you know that your feelings and fears are similar to what I think (and maybe your dh too) all the time.
Even without ulcers, I have constant pain in both hands and feet with "flares" during the night. It's hard to imagine what the pain feels like, but think of being barefoot in the snow for a few hours. Pain medicine helps a little. Having ulcers does make it worse. I hope that your dh's clear up...amputation is not something anyone would want. The one I had on my toe cleared up extremely well with Aquacel and Rooke boots prescribed by the Wound Care doctor. May be worth looking into.
I wish you both luck and pray that you can beat the odds with the ulcers.
Pixiegirl,
Oh my. Thank you so much for this I will immediately look into it. Dh sleeps very little if he gets four hours he thinks that is amazing. It saddens me so. He describes his pain as burning although I can see the similarities.
Did your ulcers go away?
I feel like I want to ask you a million questions but that wouldn't be nice. Thank you for your words they help so very much, Im sure you know.
Vanessa
Vanessa,
Four hours of sleep is probably about right....most I usually get. Sleep patterns are all messed up.
For now my ulcers are gone, but have to keepo a close watch on them (since you usually can't feel them).
You may certainly ask me anything. There is not a lot of info on rare diseases as it is. Feel free to email me anytime (pixie1235@comcast.net).
Pixiegirl
Pixiegirl,
thank you so much. I will do take you up on your offer. I am so happy for you that your ulcers are gone. That is supposed to be a good sign.
Vanessa
Not a problem. It can only help to know what symptoms other people have and what treatment has helped. Even when I was in the hospital and diagnosed, the doctors didn't quite tell me how things would be. I spent a lot of days both in the hospital and when I got out researching. Mostly clinical info available (luckily I have a medical background to decipher lol)....but I had never heard of it.
The most definitive test that can be done to confirm Buerger's is a biopsy of the skin (usually the area of the ulcer) or biopsy of the vessel. It is rarely done due to people already having wound healing issues....why add to it.
My ulcer did finally go away, but then I found the very beginning of a sore on another toe. Luckily that went away without developing into something more. I have to check daily...especially since I most likely wouldn't feel it. When the ulcer healed, it certainly did help with the pain.
Pix
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