Vent in Progress
Sep. 19th, 2014 01:21 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
alee_grrlThis post is mostly going to be a bit of whinging and venting re: my own health. I just needed to get the frustrations/feelings out. Please feel free to skip if low on spoons.
So I have reached the point in my treatment where overall I feel better than I've felt in pretty much as long as I can remember. Still not well, but better. This is actually problematic for me because it makes it much harder for me to understand that I am still sick, and that I am still disabled. Both concepts I've had a hell of time with anyway. It is also problematic because it has become harder and harder to push myself to do the needed increases in antibiotics; to move forward with treatment.
There is a part of me that just wants to be done. That is tired of the dietary restrictions, of the roller coaster ride of treatment, and that part whispers that how I feel right now is fine, that I better enough and I could just coast this way. I listened to that voice more than I had realized and put off increasing my antibiotics for months. And thus learned just how dangerous that whisper was.
I started to get worse again; not because of dietary indiscretions or reactions to other meds or stress (though I happily blamed all of those things). I kept saying that it wasn't a good time for an increase--work was too stressful, I have to be strong to help my dad and brother, etc.. I just didn't want to face the reality of being sick and of needing to move forward with treatment. A perfectly understandable reaction as I would tell anyone else in my place. But I couldn't dodge the fact that I had held off too long and now have to move to catch up.
So early last week I managed to increase to half of each of the Plaquenil and Biaxin every morning after breakfast. By Wednesday of this week I was over the worst of the herx and while not feeling great, was not feeling horrible. Even had a bit of energy here and there. So yesterday I called my Lyme doc to check in and we decided to increase again. This time adding a half of each of the antibiotics after dinner every evening. I wanted to scream. I wanted to cry. I wanted to say no. But in the end I sighed and agreed to try the increase. My doc has done good by me, and I do not want to loose the gains I have achieved.
But gods damn it all, I am sick of Lyme disease.
In other news, my father is doing as well as one can.
There are signs of his deterioration, but other than Wednesday (a result of missing a switch off his Fentayl patches), we have been able to keep him comfortable. He is starting to jaundice, and the pain is slowly increasing and spreading. His feet have started to swell (thankfully his favorite nap spot is the recliner). Overall, he is still pretty lucid and able to do many things for himself. We (he, my brother, and I) have mostly just been enjoying each others company: reading in companionship, watching movies, sitting outside. Travis and I have also tried to do some sorting and cleaning (very little was gone through after my grandmother passed last year). Mostly, we're just trying to just enjoy the time, spoil him as much as we can, and let him know he is loved and we are happy to be here with him. I think he may be holding on to be as coherent as possible to be able to spend a bit of time with his granddaughter who is coming to visit with my sister-in-law next week. He hasn't seen her since she was two. After that I have a feeling he will probably go down hill relatively quickly. But this sort of thing is very hard to predict. So we'll just have to wait and see.
So I have reached the point in my treatment where overall I feel better than I've felt in pretty much as long as I can remember. Still not well, but better. This is actually problematic for me because it makes it much harder for me to understand that I am still sick, and that I am still disabled. Both concepts I've had a hell of time with anyway. It is also problematic because it has become harder and harder to push myself to do the needed increases in antibiotics; to move forward with treatment.
There is a part of me that just wants to be done. That is tired of the dietary restrictions, of the roller coaster ride of treatment, and that part whispers that how I feel right now is fine, that I better enough and I could just coast this way. I listened to that voice more than I had realized and put off increasing my antibiotics for months. And thus learned just how dangerous that whisper was.
I started to get worse again; not because of dietary indiscretions or reactions to other meds or stress (though I happily blamed all of those things). I kept saying that it wasn't a good time for an increase--work was too stressful, I have to be strong to help my dad and brother, etc.. I just didn't want to face the reality of being sick and of needing to move forward with treatment. A perfectly understandable reaction as I would tell anyone else in my place. But I couldn't dodge the fact that I had held off too long and now have to move to catch up.
So early last week I managed to increase to half of each of the Plaquenil and Biaxin every morning after breakfast. By Wednesday of this week I was over the worst of the herx and while not feeling great, was not feeling horrible. Even had a bit of energy here and there. So yesterday I called my Lyme doc to check in and we decided to increase again. This time adding a half of each of the antibiotics after dinner every evening. I wanted to scream. I wanted to cry. I wanted to say no. But in the end I sighed and agreed to try the increase. My doc has done good by me, and I do not want to loose the gains I have achieved.
But gods damn it all, I am sick of Lyme disease.
In other news, my father is doing as well as one can.
There are signs of his deterioration, but other than Wednesday (a result of missing a switch off his Fentayl patches), we have been able to keep him comfortable. He is starting to jaundice, and the pain is slowly increasing and spreading. His feet have started to swell (thankfully his favorite nap spot is the recliner). Overall, he is still pretty lucid and able to do many things for himself. We (he, my brother, and I) have mostly just been enjoying each others company: reading in companionship, watching movies, sitting outside. Travis and I have also tried to do some sorting and cleaning (very little was gone through after my grandmother passed last year). Mostly, we're just trying to just enjoy the time, spoil him as much as we can, and let him know he is loved and we are happy to be here with him. I think he may be holding on to be as coherent as possible to be able to spend a bit of time with his granddaughter who is coming to visit with my sister-in-law next week. He hasn't seen her since she was two. After that I have a feeling he will probably go down hill relatively quickly. But this sort of thing is very hard to predict. So we'll just have to wait and see.
no subject
Date: 2014-09-19 11:49 pm (UTC)I have fond memories of reading in companionship with my dad when I lived at home. I'm glad you've got a chance to do more of that together.
*offers hugs*
no subject
Date: 2014-09-19 11:58 pm (UTC)It's been really nice to just sit and enjoy music together, or read, or watch a movie. I'm just glad I get to spend time with him.
Hugs are super welcome. ::hugs::
no subject
Date: 2014-09-21 10:24 pm (UTC)*sends all the hugs*
no subject
Date: 2014-09-20 01:03 am (UTC)It's good to hear that you, your brother and your Dad are all getting to spend a lot of time together and enjoying each others company. That likely means more than pretty much anything at this point. I hope the visit with your sister-in-law and niece goes well and that your Dad can maintain his level of comfort through it, and some while afterward.
*lots of supportive vibes and virtual hugs to you and your family*
no subject
Date: 2014-09-20 01:28 am (UTC)no subject
Date: 2014-09-20 05:17 am (UTC)As for your father: I'm glad you are getting to spend a good bit of time with him. <3
no subject
Date: 2014-09-20 04:13 pm (UTC)