Good Sunday Morning,
Dose one is in. It's been a whirlwind of emotions, and that's just me. The Hubs is okay. Thursday was a rough day. He slept some Wednesday night. It was a good idea to take the meds when he got home from work, he was able to sleep through some of the side effects. Unfortunately when he woke Thursday, he was in for the bad. His fingers and toes were fat little sausages and his pain had become something fierce. He slept most of the morning. I was grateful for that because leading up to this, he wasn't sleeping. He tried getting up around noon. It didn't work. His pain was much too intense to try to focus. Speaking of focusing, yeah, no. It's funny how quickly you become clouded. He was. He had major cold and hot sweats, but no fevers. He generally felt as if he had the flu. Friday was a tad better. I'm grateful for that. Saturday he went back to work. His biggest complaint was the lack of energy. I get it and understand.
Speaking of understanding. I get this. All of it, too much. The pain, the general feeling of crap, the tiredness, the fatigue and the loathing of everything while feeling all of these feelings. I personally, am doing okay. I'm struggling with watching him. Not because I'm selfish, but because I feel it. I remember these feelings all too well.
One week in, eleven more to go. Thank you for the prayers! xoxo
Sending Love and HOPE,
~Scar
Sunday, May 11, 2014
Monday, May 5, 2014
Chemo
Well Hello there. It's been a while. Hope you are all doing well. Here, we are dealing with some things. I have found I tend to introvert myself when things start going bad. It's been crazyhere lately. The Hubs is sick. Some of you may recall a few months back, he was seeing a doctor. I had posted that they were checking him for Psoriatic Arthritis. That particular doctor said he did not have it. It was likely he would develop it at some point in the future. At that time we went back to his Primary Care doctor and asked for some help. He had been in much pain. It was increasingly getting worse. About six weeks ago, his doctor said, "There's nothing more that I can do for you." I laughed at that, because they really didn't do a whole lot. Oh, wait. They made him feel as if it was all in his head. They put him on anxiety meds, which seemed to help a little. But that just fixed a symptom, it never got to the root of the problem.
When he came home from the doctor that day, I was livid. I live with this man, there's something wrong. His pain is real. You can't tell me when he's sleeping and kicking and thrashing around in bed, there's no pain. I picked up the phone called our insurance company and asked to see a doctor out of plan, for a second opinion. A week later we saw another doctor. We chose this doctor because he specializes in digging for answers. There's some fancy word to describe that, but I forget. :) He sat with us for over an hour. By the time we left, he was on a blood pressure med (which he needed, but no one ever addressed), he was scheduled to see a new Rheumatologist and he was to try a gluten free diet. They also took a multitude of blood tests to see if anything was abnormal there, including Lyme's and Thyroid, etc.
Fast forward to two weeks ago. It was time to see his new Rheumatologist. This one also listened to him for over an hour. He checked out almost every joint on his body. He measured his ability to breathe in and out. He measured the mobility of his spine. He also ran many blood tests. He viewed the past MRI films. We had an idea of what the doctor thought it was. But he wanted to see what the blood test showed before he confirmed it. Fast forward another week.
The Hubs has Psoriatic Arthritis and Ankylosing Spondylitis. Both are hard to treat and are not curable. The AS is arthritis in the spine. The doctor feels he's had this since sometime in his 20's and it has progressed to the point of his mobility is restricted. It's pretty bad. So this last Thursday when we saw him to get the diagnosis (for sure), we had to discuss treatment options. Well, it was more like a course of action.
This coming Thursday the Hubs will begin a chemo treatment to help alleviate his AS symptoms. It should also help alleviate the psoriatic arthritis. Every Thursday he will take a high dose of this chemo drug. The side effects are similar to any chemo drug. He will lose his hair, he will feel like he has the flu, with the nausea and vomiting and all over body pains, he will have joint pain, we have to watch his blood levels. I know I am missing side effects, but that's pretty much it. It's a chemo drug, and with a chemo drug, you have nasty side effects.
If this drug doesn't work, then he will have a stronger chemo drug delivered through an iv. This first round will last until August 1st. Then we will start the iv infusion, if needed.
So please, if you can, send some positive prayers /thoughts/ mojo our way. He is feeling pretty down about it. I think he has my chemo experience in mind, and it just makes him nervous. He also is the only one working, so he is stressed about missing work. Thanks guys for your prayers and understanding.
Until next time, Sending love and HOPE,
Scar
When he came home from the doctor that day, I was livid. I live with this man, there's something wrong. His pain is real. You can't tell me when he's sleeping and kicking and thrashing around in bed, there's no pain. I picked up the phone called our insurance company and asked to see a doctor out of plan, for a second opinion. A week later we saw another doctor. We chose this doctor because he specializes in digging for answers. There's some fancy word to describe that, but I forget. :) He sat with us for over an hour. By the time we left, he was on a blood pressure med (which he needed, but no one ever addressed), he was scheduled to see a new Rheumatologist and he was to try a gluten free diet. They also took a multitude of blood tests to see if anything was abnormal there, including Lyme's and Thyroid, etc.
Fast forward to two weeks ago. It was time to see his new Rheumatologist. This one also listened to him for over an hour. He checked out almost every joint on his body. He measured his ability to breathe in and out. He measured the mobility of his spine. He also ran many blood tests. He viewed the past MRI films. We had an idea of what the doctor thought it was. But he wanted to see what the blood test showed before he confirmed it. Fast forward another week.
The Hubs has Psoriatic Arthritis and Ankylosing Spondylitis. Both are hard to treat and are not curable. The AS is arthritis in the spine. The doctor feels he's had this since sometime in his 20's and it has progressed to the point of his mobility is restricted. It's pretty bad. So this last Thursday when we saw him to get the diagnosis (for sure), we had to discuss treatment options. Well, it was more like a course of action.
This coming Thursday the Hubs will begin a chemo treatment to help alleviate his AS symptoms. It should also help alleviate the psoriatic arthritis. Every Thursday he will take a high dose of this chemo drug. The side effects are similar to any chemo drug. He will lose his hair, he will feel like he has the flu, with the nausea and vomiting and all over body pains, he will have joint pain, we have to watch his blood levels. I know I am missing side effects, but that's pretty much it. It's a chemo drug, and with a chemo drug, you have nasty side effects.
If this drug doesn't work, then he will have a stronger chemo drug delivered through an iv. This first round will last until August 1st. Then we will start the iv infusion, if needed.
So please, if you can, send some positive prayers /thoughts/ mojo our way. He is feeling pretty down about it. I think he has my chemo experience in mind, and it just makes him nervous. He also is the only one working, so he is stressed about missing work. Thanks guys for your prayers and understanding.
Until next time, Sending love and HOPE,
Scar
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