Thursday, June 21, 2012
RX for Disaster
I have just gotten over endocarditis- (an infected heart valve)--for which I spent a week in the hospital and have been giving myself intravenous antibiotics through a PICC line in my arm for the past 5 weeks. I have one week left to go. Because of the series of infections I've had, (the last of which was the endocarditis)--I was taken off of my Enbrel (the medicine I take via injection weekly for the Psoriatic Arthritis I have). This medicine works by weakening the immune system --since the disease I have is one of the auto-immune system, when my body attacks itself , destroying joints and organs. And since it destroys the immune system I'm wide open to any germ that happens to pass by. So, for now, I'm off the med.
And because I'm off both Methotrexate (MTX) and Enbrel now, my arthritis is having a party. My hands and ankles and feet are very swollen. Every joint in my body is screaming. And in the morning I'm so stiff and in so much pain that I can't move but NEED to move in order to begin diminishing the stiffness.
My spine is very much affected by this disease also. I have Psoriatic Spondylitis which is similar to Ankylosing Spondylitis except that in the latter , the disks of the spine fuse from the bottom up. In Psoriatic Spondylitis, the joints of the spine fuse in random order. RIght now I have three vertebrae in my neck which are fused and I have 5 or 6 of my lumbar spine fused. I've never yet had an MRI of my T-Spine, so I'm not sure what damage there is in the thoracic spine. My rheumatologists had all told me that the arthritis in my spine was likely from Osteoarthritis and that meds like Enbrel wouldn't help it. However, as I'd suspected, the culprit seems again to be PsA, because amazingly, wonderfully, the Enbrel reduced the pain I've suffered with for YEARS down to a dull roar. If the med did nothing else but help that pain, to me it would be worth all the risk of taking it.
So that leads us to the decision I have to make.
Do I continue taking the biologic drugs (like Enbrel) or do I not, and let the PsA continue to destroy my body? Now, there is a note here worthy of consideration. The biologics do NOT cure PsA...they do not even stop the damage to the joints. But they do reduce symptoms and they are thought to maybe slow the disease process down. My Infectious Disease (ID ) doctor and my rheumy have both cautioned me that the biologics can and perhaps may kill me....as it would be so easy for me to pick up an infection, either bacterial or viral, have it go into my artificial hip joints, my heart (which is susceptible to it because of a congenital heart defect I have), or into my blood (sepsis)...and that would be the end of me.
I have told the docs that it is my intention to keep taking the drugs. You may think that is insane. But then you have never been in the pain I'm in. And my body is becoming so limited and I'm losing so much range of motion, that I can do very little except sit in my recliner or lie in my hospital bed. In horrible, unrelenting pain.
My daughter is opposed to my decision. She wants me alive at all costs, in any condition. I've told her that it will not be long until I will need a nursing home (which we cannot afford) or else she will have to feed, change my clothes and toilet me. I seriously think that death is a preferable state. There are others who advocate for life in all cases at any cost. I am for life too. A TOLERABLE life. And if I'm not going to have that, then I believe in the right to choose my treatment....even if it carries a risk of death. This disease can kill all by itself. It causes cardiac and pulmonary damage among other things. But even if it does not kill--it robs of life. It steals from life: pleasure, freedom, independence, freedom from pain, mobility, finances. and a host of other things.
If I can have a short time....months or years that are relatively free of pain...it would be worth it to me--I would prefer that to another 15-20 years of unrelenting agony. You must realize that I'm choosing LIFE. I'm not choosing death. I'm choosing life over a living death.
Then there comes another problem. I currently need both of my shoulders and both of my elbows to be replaced. The surgeries carry huge risks of infection for me. And not only that--they carry immense risk of permanent senility or confusion. I've experienced that following my hip surgeries and it has become more severe and longer lasting each time. There is quite a good chance that it will be permanent following any one of these impending surgeries.
Sounds like I should forego the surgeries, right? But I honestly do not know how I will live withoiut the use of my arms. I do not know how I will endure that pain
I don't know.
you know, I just read this whole post and I thought to myself, "What does GOD want you to do?" I KNOW what I want to do....but I'm not so certain about what God wants. I've got to pray about this and get into the Word for some of these answers. And I will do that before I make a definite decision.