My Docs Are Trying To Keep Me As Comfortable As Possible

July 17, 2010 at 10:47 am

With a prognosis of TERMINAL, they are trying to keep me as comfortable as possible.
For the spasms, I am on Baclofen 4 times daily, and with each dose of that, I take 6 mg of diazapam. If the spasms increase, the increase the mg of those meds.
For the pain, I am on Opana ES, 20mg every 12 hours, (morphine estended relaease), and Hydrocode 7/325 every 4 hours for when the pain gets too bad. I also have Lidoderm patches which I need on my Pelvis area, which help greatly, but only last for about 12 hours, and must wait until the next day before I can put another one on.
And for the neuro pain, I am on the Neurontin.
I also have for PRN, Marinol, but don’t like to use that, as I get high with that, (pill form of Marijuana).
To beat the great fatigue with CIDP, I take Ritalin at 6am and 11am, so I am not bed-ridden yet. I DOES work well, and I can make it to 4pm or 5pm before I have to ge to bed.
I have WONDERFUL doctors, who try to make me as comfortable as possible, giving me nerve blocks, as well as steroid shots. The CIDP increased my osteoarthritis and the joints have become more sore fastly.
And from being on Cytoxin for so long, gave me osteporosis in my spine with, (oh-I’ve gone blank here-can’t think of what the called it), but that is why the give me nerve blacks, as well as they give me shots in the nerves in my spine that dulls the pain in the nerves there.
Basically, if I develop more pain, they take care of it right away–they just have to wait for the two weeks to get the insurance approval, (I am on an HMO).
At this point, it doesn’t matter if I become addicted to anything, since I am dieing anyways. They want me out of pain, and as comfortable as possible.

But to mention to you, I have great pain in my legs when I wake up in the morning, from the CIDP, and must take the hydrocodone immediately.
And from the foley catheter I have, caused ulcerations in my urethra, which avery painful, and now next week, will have an operation for a super pubic catheter, which is a catheter directly into the bladder, so I won’t have the ulcerations anymore.
And since I have been losing at east 10lbs every month, and am down to 155lbs, my PCP said when I hit 150lbs, he is going to arrange foe a feeding tube.
And since the CIDP hit my autonomic system, it hit my phrenic nerve, which contols the diaphragm, so I must be on Oxygen 24/7, with the help of a BiPap as needed.
And the most embarrassing part, is the I must wear diaper, (depends), due to no feelling/control “down there”.
And the CIDP hit the nerves controlling my eyes, which gave me Strabismus, (seeing double), so I now have special glasses with prisms in it. But when I am too tired, I still see double, even with the glasses.

The worse part of this, is that I have a full mind, while I watch my body deteriorate.
No pain by way of all the treatments and drugs, as I say goodbye to this world. But I am fully of mind as I watch it all happen to me.
So, to those looking for help with the different problems:
-Spasms: I find the Baclofen helps very well. My doctor added the diasepam if they get worse, increasing the dose until the spasms stop.
-Pain: Being on the extended-release morphine (Opana ES) helps alot, and using the Hydrocodone for break-though pain is a good way to do this.
Using the Marinol makes you “forget” about the pain, but you cannot live being “high” all the time, so I don’t like to use it that much.
Using the steroid injections and spine treatments helps alot, too.

All the best,