I've debated posting this for a while now because I don't want anyone, especially newbies, to think this is in their future. It certainly is not. Please don't compare yourselves to what's happening to me. This is NOT the norm. I'm posting this for support only.
I've been sick with CD for almost 40 years. Inside of those years, I have taken everything available to me, and failed it all. My drug of choice was Humira. Humira gave me my life back for years. I felt great. I traveled, and I led a normal life. Unfortunately, I failed it, too. Through a series of Divine Intervention, we found out I had developed the brain lesions and demyelinating disease from Humira, and I had to stop using it.
Then came Entyvio. HUGE fail, and that was my last line of defense.
So now. Palliative Care only. I've also developed cardiac problems, in addition to the now flaring COPD, Lupus, RA, Sjogren's, MS-like demyelinating disease, Spinal Stenosis in my neck (with spinal cord flattening) and in my lumbar area, (+) titers for Scleroderma, multiple fistulae. All of these things were covered by Humira, so everything is in a huge flare. I feel worse and worse every day, and I have no alternatives. My RA factor is 168 (norm is 12-14), so my body is racked with inflammation. Add to that, Cipro ruptured my Achilles Tendon, left foot. When I tried to stand, my foot rolled, I tore the ligaments, and I fell. Insult to injury.
I've decided no more invasive anything. I have drawn a line in the sand and said, 'no more, I'm done'. My GI said I won't see the next thing coming down the road. That's fine. I have no NO quality of life, no good days.
I saw my Palliative doctor today who is concerned I'm not taking enough of my pain med. I cannot take more than I am because I have a wee dog who depends on me, I have no bathroom on the main level of the house, and navigating stairs, especially with an air cast on, well, it's impossible to take more.
I'm a bit depressed, for sure. So, that's what prompted me to finally post this. I have zero family support, but do have a couple of good girlfriend neighbors. They and you guys are my only support system. Oh, and my doctors. I love my doctors. My GI doctor said, "I will never forget the crazy woman who personified courage". My Palliative doctor said today, "You have worked so hard for so long, and your body is so full of inflammation, no doubt there aren't many good days. You're exhausted and your body is playing out, and I'm so sorry. You're one of the most courageous people I've ever known."
See? How can I find any fault with doctor like those two, and my other doctors are just as sweet. They all validate me, and that's important.
After I post this, I'm likely to go to bed because I am tired today. This has taken a lot out of me just to put it all in writing.
Thanks for your support, dear people. :ghug:
I've been sick with CD for almost 40 years. Inside of those years, I have taken everything available to me, and failed it all. My drug of choice was Humira. Humira gave me my life back for years. I felt great. I traveled, and I led a normal life. Unfortunately, I failed it, too. Through a series of Divine Intervention, we found out I had developed the brain lesions and demyelinating disease from Humira, and I had to stop using it.
Then came Entyvio. HUGE fail, and that was my last line of defense.
So now. Palliative Care only. I've also developed cardiac problems, in addition to the now flaring COPD, Lupus, RA, Sjogren's, MS-like demyelinating disease, Spinal Stenosis in my neck (with spinal cord flattening) and in my lumbar area, (+) titers for Scleroderma, multiple fistulae. All of these things were covered by Humira, so everything is in a huge flare. I feel worse and worse every day, and I have no alternatives. My RA factor is 168 (norm is 12-14), so my body is racked with inflammation. Add to that, Cipro ruptured my Achilles Tendon, left foot. When I tried to stand, my foot rolled, I tore the ligaments, and I fell. Insult to injury.
I've decided no more invasive anything. I have drawn a line in the sand and said, 'no more, I'm done'. My GI said I won't see the next thing coming down the road. That's fine. I have no NO quality of life, no good days.
I saw my Palliative doctor today who is concerned I'm not taking enough of my pain med. I cannot take more than I am because I have a wee dog who depends on me, I have no bathroom on the main level of the house, and navigating stairs, especially with an air cast on, well, it's impossible to take more.
I'm a bit depressed, for sure. So, that's what prompted me to finally post this. I have zero family support, but do have a couple of good girlfriend neighbors. They and you guys are my only support system. Oh, and my doctors. I love my doctors. My GI doctor said, "I will never forget the crazy woman who personified courage". My Palliative doctor said today, "You have worked so hard for so long, and your body is so full of inflammation, no doubt there aren't many good days. You're exhausted and your body is playing out, and I'm so sorry. You're one of the most courageous people I've ever known."
See? How can I find any fault with doctor like those two, and my other doctors are just as sweet. They all validate me, and that's important.
After I post this, I'm likely to go to bed because I am tired today. This has taken a lot out of me just to put it all in writing.
Thanks for your support, dear people. :ghug:
) I don't swim in the ocean because I'm afraid of what's down there in the water. *shudder* But it is beautiful to look at.
