Kay,

One thing that would work for me is to make a tally mark on a calendar
or piece of paper that I taped to the fridge or notebook or white board.
Twenty Tally T-Shirt | Spreadshirt

For example if I already made a check mark for a.m. meds I would know that
I took my meds.


A friend of mine had a system of turning the pill bottles upside down after
she took them.

Or a fridge magnet that one could turn upside down or move from the right to
the left side of the refrigerator.


Also, consider a phone app:
Medisafe Meds & Pill Reminder - Android Apps on Google Play

You already have figured out that color and space would help.
I am simply sending these ideas your way in case they are helpful.


M

I am going to be SO ****ING BUSY, I really could have done without the accidental OD yesterday... I feel okay today though. I usually take my pills around 7am, but I'm waiting until around 11am to take them today just to be safe.

I was supposed to go grocery shopping, but I was so ****ed up, there was no way I could do it yesterday, so I will have to do that today.
My appointment with the nephrologist isn't until 3pm tomorrow, so I will do the laundry earlier in the day.
That way, I will have both of my nasty errands out of the way early in the week and can make the most off my down time later, when I'm grouchy and tired from running around.

I thought I would have my blood drawn while I was out today, but since I took so much medication yesterday, I think that's a very bad idea. I may even wait until Wednesday to see if the nephrologist orders blood work, too. I don't want to admit that this is like at least the 5th-or-so time I've done this.

I think just splitting the pills up and putting them in two different places should do. I'll keep my am pills in the coffee table draw, and put my pm pills in one of the bathroom drawers. I think I would actually forget to perform any added security measures.

I just added up my copays for the upcoming week: $120
I hope my cough doesn't get worse, and I don't have to spend another $20 to see my PCP :o

how much can you take?
love
bobby

We have met our deductible for the year.
So now we pay 20% of the bills.
GP, PT and maybe new PDOC.
and I am going to see an ophthalmologist, see if his visit is covered.
I have not seen an eye doctor in many years.

I hope you get done the things that you have to get done with out having any difficulties, traffic, no falls, or complications.
(((((HUGS))))
bizi

How much of what?

I just rescheduled my Friday pdoc appointment to next Friday at 7:20am. I'm not too worried about the time, as I'm up very early every morning anyway...

My schedule for this week was just TOO MUCH. Now I'll have 3 appointments each week vs. 4 this week, not including getting my fingers and toes done on Wednesday. Now I will have Friday completely to myself.

I looked up a couple of significant dates:
I completely discontinued lithium on 8/30
I had the kidney ultrasound on 10/6

What that means I don't know.

all the things you have to go through
love
bobby

I forget what the results from the kidney ultrasound were and why they were taken in the first place?????

you have so much to keep straight....
heavy sigh
bizi

I have urinary retention (difficulty emptying the bladder) from the MS and have to catheterize. Sometimes urinary retention causes damage to the bladder, kidneys and ureters, and sometimes catheterization can damage the bladder, so that's why they did the ultrasound.

I have calcium deposits in my kidneys. It's different from kidney stones. It's called nephrocalcinosis, caused by high levels of calcium in the blood (hypercalcemia)... I'm 99.99% sure mine is caused by long-term lithium use, which is fairly common.
It's linked to a condition called hyperparathyroidism (they are 4 small glands on your thyroid that control the levels of calcium and potassium in your blood stream).
My thyroid is already permanently fried from lithium.

Sometimes the hyperparathyroidism can be cured and the calcium deposits in the kidneys go away. And sometimes kidney function returns to normal. That's what I'm hoping for (fingers crossed).

---------

I'm very, very nervous about the nephrologist appointment today. I know I will likely have to have more tests, and won't get all the answers I want today, but I will get more information, so that will be great... because I'm scared s**tless right now and very anxious.

I woke up around 6am, and the appointment isn't until 3pm, so that's a long time to wait. Doing the laundry will be a surprisingly good distraction, but it will only eat up about 2 1/2 hours including the travel. I suppose I will clean the rest of the time, but I already cleaned the whole bathroom yesterday...

-----

I bought the new pill cases yesterday. They are completely different in size, shape, and color, so there is no mistaking them. My am pills are in the drawer in the coffee table, and my night pills are in a drawer in the bathroom. I am hoping, and think, that will be enough to prevent future med errors. I would really have to go out of my way to get my night pills, and that case locks, as another security feature.

:(:(:(
Thank you for explaining that.
I hope you get some relief/answers after the more testing that you have to do.
hugs for you today, seems inadequate.....
(((((HUGS))))))
Sorry this is so hard for you, it would be hard for anyone....
bizi

The nephrologist (kidney doctor) was very, very nice.

He thinks that instead of lithium-> hyperparathyroidism-> calcium deposits, there is something else directly causing them (it could be a million things), but I'm not so sure. He wants to see old lab tests that were drawn at a private laboratory. I requested they be faxed yesterday, and I hope that they sent him ones from far back enough. I will have to call his nurse/secretary and ask.

Either way, he doesn't think that the damage is reversible. But he said that it will probably be a long time until I will have any serious problems, because my kidney function tests (measured by eGFR) have been poor for a long time, but I've been holding my own.

I have to have A TON of blood and pee tests today, and a CAT scan sometime soon. When he gets the results and studies them, I will get an appointment for a follow up.

I haven't had a nap in I don't know how long, and wouldn't have been able to take one after that appointment if you dropped an anvil on my head...

I'm more confused than before. And more anxious.

----

In other, better, news...
I went to BJ's because they were having a designer frames sale in a last ditch effort to find something before paying a mint at my eye doctor's office today. I found the PERFECT pair of glasses for about 1/2 of what I would have paid for a pair at the doctor's office using my insurance. I paid for them, to hold the frames, but have to drop my script off after my appointment today.

I also treated myself to a new broom and dustpan :)

-----

I'm headed out to get my nails done now....

VERY, VERY BUSY DAY TODAY

Kay

Sending you thoughts .

Donna :hug::grouphug:

Thank you Donna :hug:

I ran around all day yesterday!

From 9-11 I was at the nail salon getting my fingers and toes done. I got something called a powder dip done (instead of a gel manicure) last time and my nails never chipped or broke, so they didn't have to be cut down. They are bright red, long, and look very nice.

My neurologist sent me a message that the letter I need to get my medical marijuana card was ready to be picked up, so I drove about 20 minutes away to get it.

Then I drove another 20 minutes to donate pee and a TON of blood (including some for my PCP re: the high lymphocytes).

Next, I went to my eye exam, where I got a copy of my prescription. I drove about 1/2 hour away to drop it off at BJ's so they can get started on my glasses.

When I got home, I called a clinic, and got an appointment for this morning to see a doctor so I can get certified so to get my medical marijuana card. I don't know how long it will take before I actually get my card tho. There is an online application process that is notoriously difficult... if they offer to do it for me for a fee, I will pay it.

Anyway, I didn't get home until 3, it was A LOT for me, I was exhausted, and took a 3 hour nap once all my errands were done.

My appointment at the clinic is at 11:30am, and I'm having the injection on the right side of my neck at 2:45pm.

I may need to pick up containers at the hospital because the laboratory called me to let me know the nephrologist ordered a test that requires a 24hr urine collection without realizing it. They are going to contact him, and his office will call me if I have to go through with it.

you were a busy gal!
That sounds exhausting!
a 24 hour pee collection is really the best way to see how your kidneys are doing, I know it will be a PITA....
I am excited that you have an appointment for the clinic today! That was fast!
I sure hope that the injection helps this time and that it is placed exactly where it needs to be.
glad that you got a nap in!
(((((HUGS)))))
bizi

Kay,

You made a good plan for your meds.


M

The appointment at the clinic went well. The receptionist was exceedingly nice, but totally stoned (lol) and the doctor was that really creepy kind of weird. The "normal" office manager provided education about the laws and marijuana in general, including the types of weed, what they were good for, and delivery methods. The appointment cost $200.

They filed my certification with the state, and I'm free to apply online now (and pay another $50), but not until after noon today because the site is under construction, which will drive me nuts because I'm so impatient. Apparently they're very particular about photos, so I messed around with those and think I'm all set there. I may encounter a problem because the address on my license doesn't match the address on the application. I moved and alerted the DMV, but never got a new license since I didn't have to. If I end up having to, it will really delay things, and of course, cost more money. I will check out how much it will cost to do that.
About a week after I submit my application and it's approved, I will be emailed a temporary card (good for 1 month), which I can start using immediately until I receive my plastic one (good for 1 year) in the mail.

The injection in my neck really hurt this time. I don't know why. I could tell when he put the needle in that he got the right spot, so I am hopeful that this one will work, especially since THERE IS LESS PAIN THERE THIS MORNING !!! :):):)

I contacted the nephrologist's office, and I DO have to do the 24 hour pee collection, and I start this morning. So, I'll be home doing that today :o
I pee a lot, so I hope that container is big enough! I'll have to drop it off at the hospital tomorrow morning when I'm done.
He received all of the results of the blood work I had done years ago at that private laboratory, so I don't have to worry about making anymore phone calls regarding that.
My CAT scan isn't until Friday, and my follow-up with him isn't until Tuesday the 7th, so I will have to wait a while for answers. I hope I don't need anymore testing.

My lymphocytes were high again, but in the same range. Instead of someone in the office calling me, my PCP posted my lab results and sent me a message via the patient portal saying he wants my blood tested AGAIN in another month. I'm happy that the results aren't worse, but I don't know how comfortable I am with the fact that he's comfortable with them being abnormal for so long and not wanting to know why. My results are not off the charts, so I just set a reminder on my phone to have my blood checked again. I have plenty of other things to worry about.

After next week, my doctors appointment should start to spread out a lot more, and hopefully I will have more time to rest.

I have today all to myself, and anything I decide to do would be strictly voluntary, but I don't know if I will be able to relax, since I have been on the go all week. I'm sure I'll do some cleaning, but there's not much to be done since I did quite a bit of cleaning on Monday. I suppose I will find something to do with myself...
Maybe I will watch that Robert Redford movie? If I can figure out Netflix!!!

Good morning Kay!
I am so glad there is less pain!!!!!!!
I hope you can relax and rest/nap this afternoon.
You have been through a lot.
Good luck with the 24 hour collection, and when you are finished time wise, collect one more cath so it will be precise and your bladder will be empty.
I hope it is not too much of a PITA!
I hope you have a good day!!!!!!
(((((HUGS)))))
bizi

I called the nephrologist's office and spoke to the nurse to ask if the doctor wanted to add on any tests while he had the change for 24 hour urine tests. I'm waiting to hear back, I may not.

The online registration for the pot card won't accept my license since my addresses don't match, so I went online and pid $25 to have a new one sent to me. They say they arrive in 7-10 business days, but in my experience they arrive sooner. Anyway, it's just more waiting :mad:

Kay,


I follow your appointments and phone calls but sorry that I do not always reply.

I wonder how you do so much except that you run high.


Are you organized about keeping track of the paper work that is generated?
What kind of calendar do you use for the appts? I use my phone's calendar but I also write notes to myself.

I like that your docs do some of this electronically it seems.


M

I can't wait to hear what you think about the movie!

I am hoping you are able to distract your self while you wait for the cards, etc. I am sorry you have to wait!
Did Medical MJ just get approved in your state? or did you not think you needed it?:confused:
bizi

Yes, I do run high.
TBH, I am TOO HIGH right now, but I'm afraid of changing my meds with everything going on. My mood is good, and I need it to stay that way right now. I see my pdoc on Friday.

I am high functioning outside of episodes, but I need a lot of help because of cognitive problems. I ask for appointment cards for everything and carefully put them into the calendar on my phone when I have the time and can concentrate, and I set up alerts. I also keep written lists of appointments week by week, and usually have to write them over and over again.

I have a pretty big hardcover notebook with an elastic closure (I can find you a link if you are interested) that fits in my purse, where I keep notes on EVERYTHING. I'm always reorganizing and rewriting those, too. Everything I get from the doctors gets folded and stuck in that book and occasionally gets sorted out.

I'm big on LISTS. Part of that, and the rewriting is OCD.

The system is working for me for now.

I forgot to mention that in Massachusetts, that they don't issue regular licenses/IDs at the DMV. They give you a temporary paper one and send the real deal in the mail, so going to the DMV would be pointless. Hopefully mine will arrive in the mail soon so I can finish the application process.

Medical marijuana has been around for a few years here. Obviously I could have gotten a hold of some if I really wanted to, but I haven't smoked since 2015 when I stopped drinking. No drinking… no drugs. But my pain has gotten so bad that I'm waking up repeatedly during the night in severe pain because of spasticity, and it's interfering with my ability to take naps at times. It's time to let go and accept a little help. I won't be able to smoke unless I'm sure I'm staying home, and will only be starting out using it at night.

I finished my 24 hour urine sample, and will have to go drop it off at the hospital when outpatient services opens. I'm happy it's over with because it was a PITA. What do people who work have to do? Take the day off?

I watched La La Land yesterday, and it was very good. It's a musical, but not too much so.

My neck still feels a lot better :):):)

can you wrap a warm towel around your neck or it probably is a different sort of pain

Because of all my past neck problems, I have a heating pad wraps around the neck. It doesn't help with the pain I'm having because it's neurological.

But you've given me an idea…
I should be using the regular heating pad on my shoulder. I never thought of doing that.

oh great! the pain must be so bad on your neck!
love
bobby

We will wait with you while you wait for your licenses, cards etc. I am glad that you are seeking MJ for some help. We all want you to have better pain control.
So glad that the injection seems to have helped with your neck.
Yes a heating pad could help your shoulder, good suggestion bobby.

have a good day!
bizi

The pain in my neck is a little up and down, but it's nowhere near as bad as it was before, so I am encouraged that maybe this time it will provide lasting relief :):):)

A lot of the results of my blood and urine samples have been posted on the hospital's patient portal, but some are still pending because I just dropped off the 24 hour urine sample yesterday and some of the tests are "fancy" or require calculations. Many of the results don't have reference ranges, but I have looked up what they should be...
A lot of them are off, but it's all way over my head, and some of the results were a surprise to me.

The rest of the results should be posted sometime Monday. I can look at them as many times as I'd like, but they're not going to mean anything to me until I see the nephrologist on the 7th. I will still obsess about them tho.

I have been consistently at 2mg of Klonopin for a couple of weeks now, and have been as high as 2 1/2. It's rare for me to be that high for so long outside of an episode. I don't think I can taper just yet tho.

I did light food shopping yesterday, and decided I was done for the day. The floors need to be cleaned, but I earned myself a break.

The Pats play this afternoon. I hope it is a good game. I wish I had my new glasses to enjoy it!

I am definitely hypo.

I’m racy and can’t sit still. It’s a big bump up.

I’m going to have to change my meds. I’m sure the dose of Rexulti needs to be reduced (for starters). I will call my pdoc tomorrow, but I’m cutting it in half tonight.

I am glad that you are self aware.
(((((HUGS)))))
bizi

Is Rexulti the Same as Abilify?


There is a law suit on this medication.

No, Rexulti is for bipolar depression, and Abilify is more of a standard mood stabilizer, but most mood stabilizers can be used up and down.

Drug companies are famous for altering and remarketing drugs to maintain profitability, but all meds still have to pass the FDA smell test for particular use, safety, and effectiveness.

We had a really strong storm here last night with 40mph winds and gusts up to 65mph (but little rain). Corey said ALL the street lights are out and there are downed trees everywhere. He said a bunch of transformers blew up, too.

Of course we have no power. I think it will be a long time before we get it back, and the sun won’t be up for another 1/2 hour or so. It usually takes the city a long time to get the traffic lights sorted out, so I’m going to reschedule my 10am Tysabri infusion.

I made myself a double cup of crappy instant coffee on our gas stove, but doing that makes me nervous, so it will be the last.

Because I can’t sit still, sitting here alone in the darkness and quiet is torture

did they say when they would restore the power? How is your neck? I have been making a mess of my kitchen using my old filter cone to make coffee.
I really like the taste of maxwell house. I hope those empty things I bought for the machine work with not too much mess. I am afraid marci will kill me.

I have no idea when the power will be restored. I didn’t call because NOBODY had power, so they probably have no idea.

Maxwell House comes in k-cups. I wish you had bought the instant for emergencies cuz Regular coffee pots can be very messy to use, so I hope you get your new Keurig soon :hug:

My neck pain is on and off... not better like when I first had the shot, but I will give it some time to work.


I just called my pdoc to let her know I’m hypo and cut the Rexulti in 1/2. I left her a message, but she’s out of the office because of the storm. I guess she will get it anyway.

I used the melitta filter and filter papers for years

I am sorry you are with out power. I guess You are doing everything on your phone? Using data? no wifi right?
maybe the power will come on quickly, hope so for you.
bizi

I was using my phone and cellular data yesterday. It was my only source of amusement.

There was no way I could sit here alone all day, so I went out looking for coffee, but EVERYTHING in town was closed due to power outages. I ended up going to a Walmart (Walmart is ALWAYS open), and bought a couple of bottled coffee drinks because I can't survive on 1 cup of coffee a day.

I lingered in my car for a while when I got home so I could listen to the radio, charge my phone up, and smoke a couple of cigarettes "indoors."

I cleaned the hard floors, and put down carpet powder to vacuum… it never occurred to me that the vacuum runs on electricity. lol.

We had no power until 2 this morning. I hope the stuff in the fridge and freezer are okay. We are lucky because we have a gas range and were able to reheat leftover chili for dinner. But apparently not everything here runs on gas, and we had no heat or hot water. I had to take an ice cold "shower" yesterday morning, but it's nothing I'm not used to after living in the old s*** hole for so long where I hardly ever got a hot shower. I can't wait to take a good shower this morning.

-----

I see the shoulder guy this morning at 10am. I'd rather not go because It hasn't been causing me severe pain for a few days, but I decided to keep the appointment because it's an ongoing issue, and I could wake up tomorrow unable to lit my arm again. I just don't know what will do it.

I didn't hear back from my pdoc yesterday, so she must be okay with me cutting the Rexulti dose in half. I see her Friday at 7:20am. Maybe I will hear from her today tho.
I also have the CAT scan of my kidneys Friday, but not until 2:15pm.
I don't like the big chunk of time in between the two appointments. Maybe if I come down enough, I will be able to take a nap.

I just got an automated phone call saying my appointment with the shoulder guy has been cancelled (I'm sure due to the fall out from the storm). They said they would call me to reschedule.