lability issues again
Bluebottle ... I'm glad they have figured out the problem. Hopefully, this will be taken care of now. I'm going really slow on the feedings ... tried to take in more than I usually do, and I paid for it with lots of gas pains. My theory is to work with your body as much as possible and listen to what it's telling you.
Speaking of listening to what your body is telling you: Had my next-to-last clinical trial visit Friday, and tried to convince them that the open label meds are not affecting my lability problems.
And apparently I did.
The previous trial meds had SUCH a good benefit, in energy and mental focus, along with controlling (eliminating!) excess emotional displays, The current trial meds are doing very little.
So I had a meltdown in the exam room Friday when the doctor in charge (not Dr. Graves, a resident, I think) was telling me how good I have it, and why I shouldn't want to take a med that actually works. I'm in the open label phase, so they know what I'm getting now.
She said it would be at least a year before they could definitly tell me what dosage worked so well. And I lost it. I don't have *a year* to play around with paperwork games. You tell me it will be a few weeks, or even months before I can get it, OK, but when you start talking years to wait for me to get a proven med I wonder what planet this doctor got her degree at. What part of ALS is it that she doesn't understand?
So, as she kept patting me on the head and saying how lucky I am because I can still walk, and murmuring while I was sobbing, "I understand" I started screaming at her "You don't freaking understand. Stop saying that and listen to me." (Of course, she couldn't understand my speech, either, let alone my meaning.)
Anyway, I'm afraid I lunged at her screaming and I'm afraid scared her a bit. Or even a few bits. She edged over to the door and opened it saying "We need some fresh air, it's really stuffy here" and went running to get Rebecca, the woman in charge of the trial. When Rebecca saw me sobbing and scream she was really shock up, poor thing, and was shaking for about the next hour.
Anyway, the episode lasted 40 minutes. (I timed this one, since there was a big ol clock on the wall.) In the midst of my wailing, I started screaming at Juliana another four times, with J opening the door and looking like she was ready to bolt each time.
After the first lunge at her, I was able to start typing again and told Rebecca via light/writer (Rebecca's one of the sweetest people on the planet and I'm sorry she had to see this) ... "Don't worry about this. It's just the lability. I'm fine." Of course, I was still sobbing and screaming at the time.
Anyway, it ended, and I continued my attempts to communicate: "The lability meds are not working." And Rebecca said, "Uh, yes, I can see that." She is the one who translates my trial diary. She said, "When you put down emotional meltdown, this is what you're going through?" I said, "You got it." And she said, "Holy ..." (I translate loosely)
So, in my own little way, I continue to spread awareness of ALS symptoms. :twisted:
They paged Dr. G. out of a meeting, and I continued my campaign with him to get lability meds that work as well as the first trial meds did. It may take another month till this trial ends, but they want me to continue to the end. (It's probably a question of getting paid by the Zenvia manufacturer ... I'm sure if I drop out, UCLA won't get paid, and financial considerations are OK with me. Everybody's got to make a living, and as a PALS, it is very much in my interest to help ALS clinics survive.)
On another note ... when my home-visit RN arrived a couple days ago and was filling out her paperwork, she asked, "Do you have a fever?" It is a blessing that my higher power took away my speech first ... I guess she hasn't figured out how thermometers work. She probably missed that day in nursing school. :razz:
Onwards and upwards ...