I had my bi-monthly pain appt. It went as it always does. Spent a bit letting Stacy know life is as usual, she asks the standard "How have things been?" question that I know answering with "fine" will get me the look. I don't know exactly how to describe that look either. It's almost one of those Mom looks that we use when we know there's more to the story than what we're being told. But it's not quite as maternal as the Mom look. But it's a look that says she KNOWS there's more to it than what I am telling her. I told her that there's nothing more than the normal ups and downs of life with chronic illness. That I couldn't complain....to which she replied, "Yes you can." I had to laugh at that because we've discussed in the past how complaining about the normal stuff that can't be changed does me no good. I told her about my new meds. We discussed my request to change how I take my Neurontin and Robaxin. If I took meds as they are supposed to be scheduled it'd go a bit like this:
- 6 am: Neurontin, Robaxin, Prednisone, Vesi-Care, Provigil, Plaquenil, Omeprazole, Calcium, a Multivitamin and then 2 ea. Methadone and Guaifenesin.
- 9 am: Oxycodone Technically it's PRN and I don't take it if I don't need it, but when I am up early, I am usually getting myself cleaned up and dressed around that time of day and need it then. At the nursing home, most of my nurses didn't ask or make me ask if I wanted it since they knew I always wanted it.
- 12pm: Neurontin, Robaxin, Metoprolol ER
- 2pm: 2 Methadone
- 6pm: Neurontin, Robaxin, Acyclovir, Oxycodone (PRN)
- 10pm: 2 Methadone
- 12am: Neurontin, Zanaflex, Plaquenil, Folic Acid, Arava
- 3am: Oxycodone (PRN if I am awake and need it, which is many nights)
That's a bit much. 4hrs at most between doses. And that list doesn't include any Salagen, which I can have twice a day or anything for headaches. It's a lot better than one of the nursing home med schedules they had me on. It was wacky. I didn't have but 2 hrs between a doses a couple times a day. I took meds at 6am, 8am, 9am, 12pm, 2pm, 3pm, 6pm, 8pm, 9pm, 12am & 3am. That didn't last long and thankfully Dr Wilson was great when I told him it was driving me nuts. He sent the unit mgr to work out the schedule I wanted. I don't know if that happens with too many people. But he was also the doc that if I asked for a med and a nurse backed me, I definitely got it. It didn't always take a nurse to back me either. Many times I asked and he said sure. But then again, I am not the type to just ask for meds just to get them. If it were up to me, I'd not need meds. But unfortunately, I do. So I have no choice. I've learned my lesson about leaving RA untreated. It causes more problems than it solves.
Stacy said that I could adjust the timing within limits. If I wanted to go longer than 6hrs, I could. Not shorter of course but that's not what I needed. She changed both the Neurontin and Robaxin scripts to read PRN, that way if I didn't need them a month after my fill date, the pharmacy didn't hassle me about not properly taking meds. I appreciated that. She said I didn't HAVE to take all 3 Robaxin and all 4 Neurontin if I didn't need them. But I know I need them most of the time. Now when I am in one of those major fibro flares where I am doing nothing but sleep 12-18 days then I may not need them. But I usually do because I definitely notice when I miss em. Especially the Neurontin. The neuropathy gets so bad that I just feel as if my hands are burning and tingling. And anything touching my feet, including socks, has me in that amped up pain state. So because she said I could make changes, I am gonna. What I am doing is dropping the Zanaflex and taking 3 Robaxin a day. Or if I get to where it's not letting me sleep, I have 2 other options. I can double up on Neurontin at bedtime if the neuropathy becomes an issue. The other thing I can do is drop to 2 Robaxin and take Zanaflex at bedtime. That may be what I end up doing. IDK yet. Now with the changes, my med schedule looks like this:
- 6am: Neurontin, Robaxin, Prednisone, Plaquenil, Provigil, Vesi-Care, Metoprolol ER, Prilosec, and 2 each of Methadone and Guaifenesin
- 10am: Oxycodone PRN
- 2pm:Acyclovir, Neurontin, Robaxin, and 2 Methadone
- 6pm: Oxycodone PRN I only take this if I really need it, although many times, I don't need it.
- 10pm: Neurontin*, Robaxin, Folic Acid, Arava, Plaquenil, and 2 Methadone. *I am allowed a second Neurontin if I need it.
She was glad I had success with Candyce. We were discussing the addition of acyclovir to my med list because of shingles. That got us discussing the shingles vaccine and whether people who have had shingles can get the vaccine. I thought I'd read that they could but didn't know for sure. (I looked again when I got home. And that is what I'd read. So I left her a FB msg about that.) Then as she walked me out to the desk I told her again how glad I was to be back in her care. She hugged me and thanked me for saying that. Then I just had to wait on Gar to finish up with his 2 runs. He had 2 ppl at appts and needed to run them home, then he switched vehicles and got his paperwork for today so he could just come home when he picked me up. I kinda crashed for a bit, then looked up the info I wanted to find for Stacy and sent it to her and called Mom and that was it. I was wiped out.
Now I have NOTHING appt wise until 9/25 when I see Stacy at 2 and then labs at 3:30 and I see Candyce at 3:45! That will be interesting!