I am soooooo losing it

[Mattsmom277]

I just gotta laugh. My MS is progressing and I'm learning to cope in my own ways. I have my pity me days, but I am working hard to just keep on keeping on. It helps to have easy child and difficult child to keep a smile on my face for!

Anyhow, I've laughed the past 2 years at things I would never have imagined. Its odd what happens to ones humor when your brain goes wonky and your body follows suit. I laugh when I can't walk? Or when I'm carried to the toilet and "aided in my functions" or in bathing etc. I even joked with the doctor while admitted a few days before Christmas to the Critical Care Unit and was completely deaf in my left ear with a face swollen like a monster and the worst pain of my life. My family doctor was alerted that I was admitted overnight and he came to see me before his office hours and woke me up from a drug induced sleep to speak to me. He and I laughed really hard at how I was his first cyclopse patient as my face was so swollen that I appeared to have one eye. Weird, that's me!

Anyhow, part of the progression is my memory or doing stupid things and not realizing it. Or saying wrong words and not realizing it. People will point out to me what I said instead of what I shoudl have said and I'll look at them like their nuts, I'm so certain the words were correct.

So this week in my chronicles. I'm ill for like the 5th time since January with another flu or bug of some type. From last time, only about a month ago, I had anti-diarhea pills in the house. (this is not MS related, except for my carp immune system from the MS is helping me catch EVERYTHING that goes around!)

So past 3 days I've taken these stupid pills and been sleeping and running to the bathroom, and not much else. I couldn't understand why the medications weren't helping and was planning to see my doctor today as I was heading into day 4 of this.

At 4a.m. I woke from a dead sleep, rushed to the bathroom and well, ya know.

So I couldn't sleep again and made a tea and went to take more of these not working medications. Imagine my surprise to realize that I was taking for 3 days straight .... ALLERGY medications!!! The drowsy type. 12 hour long acting, need only one tablet, types. I was taking two each morning and one again each time I had to use the bathroom, as is explained for diarhea medications!! Some days I was taking 7 or 8 of these things!! No wonder I've been a zombie sleeping away for days!! DOH!!!

So I'm now making my SO dole out all medications, over the counter ones, vitamins, and prescribed medications. I am wondering now what other medication errors I've been making??

The up side here??? I'm awake!!! Mid day!!!! I see SUN!!!

Okay so you may all not understand the humor in this, but boy we all laughed round here this morning. My defense is that both medications have similar packaging and are both blue/green tablets haha.

 

[DammitJanet]

I can understand the laughing because if you dont laugh you might as well just lay down and cry. We all got a ton of laughs at my expense when I almost died from meningitis last fall. It wasnt funny at the time but I was so delusional that everything I said was just wacky. One of the funniest things was I thought for the longest time that I was pregnant with twins! And I really was convinced of this and told everyone that I was and had names for the twins and was gathering help for after they were born...the whole works. I even thought I was going online to tell people online...including this board...to tell them about the twins. It took me quite awhile to figure out I wasnt pregnant...lol.

 

[eekysign]

I think part of having/surviving a chronic illness, especially a serious one, is the ability to laugh at the ridiculousness of it all. My best friend and roommate has a blood clotting disorder, and she's had two strokes in the last year. She now is called by her given name, and "Strokey McStrokerson", and "Weeble-wobble". She's back to mostly normal at the moment, but for a while she was "walking like a drunken toddler" (her words!), which gave her Weeble-Wobble ('cause she didn't fall down!).

If you don't laugh at the funny parts, you'll just cry. Laughter is always the better option, at least, that's how we see it around here.

 

[Star*]

The good news is - YOUR butt doesn't have the sniffles from air borne allergens. THe bad news is, well - you know.


I had Midol for - you know in the cabinet - and told Dude to take some Motrin for a headache - at the end of the afternoon I looked and saw the package of MIDOL on the counter and asked him "Is this what you took?" and he replied "Yeah why?" and I said "Is your headache better?" and he said "Yeah why?" and I said "How about the bloating, cramps and." before I could finish he yelled at me YEAH WHY.....and I said - because you took Midol. He blinked and said "WELL YOU TOLD me to take it." and I thought - well Midol does NOTHING for difficult child irritability."

Thats about as bad as when he called my pretty little houseplant Chlamydia - in showing off to his home bound teacher. I nearly croaked - it was a Cyclamen.

And he was 12 - so don't feel bad.

 

[flutterby]

I weeble, I wobble and sometimes I fall down. I'm pretty sure I messed up my medications on Monday. My lamictal used to be a diamond shape and this refill is round and about the same size as my phenergan. I'm pretty sure I took a phenergan instead which would explain the spaciness (from missing the lamictal) and the sleepiness (from the phenergan).

My brain is like swiss cheese. My kids will tell me something and it's brand new to me. They'll say, "I've told you this 5 times already." I'll respond, "Really? Was I there?"

What are ya gonna do?

 

[Abbey]

Ha, Star. Midol was made by the Gods. I'm sure of it. Now your son is enlightened.

Abbey

 

[DammitJanet]

I just had to check my medications to see if they had changed my lamictal...lol. Nope! They did hoover up and refill my warfarin though when I specifically told them not too. They told me I didnt have any refills left on that or the metoprolol so it wasnt going to be an issue anyway until I went to the doctor to get the metoprolol and my pain medications. Well I get home and there is warfarin and metoprolol in the bag!

 

[Mattsmom277]

YAY! I'm not the only one

An update: I'm feeling better! With just 2 wee PROPER pills! YaY for a SO who is making sure I"m taking the right stuff now lol.

I'm up to 13 daily medications plus over 15 vitamins/supplements. I feel like I do nothing but take pills. Sometimes I don't eat meals as I'm waterlogged and pill logged! At least now I'll take the right ones !

I love the nicknames thing. We call me Queen Gimpy or McGimp or MS.Thang. Quite a few things, whatever strikes as funny at the time.

I'm hoping I'm not McGimpy on Monday. I'm somehow hosed in by easy child into supervising 2 busloads of kids on their end of school year trip. We leave her school at 7a.m. and return at 8p.m. On our feet all day. It's cool, a science center. But dang. Thats alot of foot time lol. Hope I take the right medications that day

 

[DammitJanet]

Sheesh. I dont have a clue how you are gonna do that. I would have to take my chair. By now, my family is used to just lugging it along. 13 different pills? You have me beat. I take 2 lamictal, 3 topamax, 2 metoprolol, 1 klonopin, 1 ambien, 1 seroquel, 1 to 3 lorcet's, up to 4 either naproxen or ketoprofen, 1 cerofolenNAC, and now 1 biotin and something called clobetasol probionate foam that I rub in my hair. I just dropped warfarin about two weeks ago. Oh...I forgot the zanaflex!

I too sometimes think I am rattling after taking these pills. Tony swears my poop should be rainbow colored...lol. Only way I can keep up is I use a huge weekly pill box and I put everything in there on Sunday night. I have a special time that I do it every week and god help anyone who gets in my way.

 

[Mattsmom277]

I hear ya Janet. I've tried different methods to keep track, including the weekly boxes etc. Now my SO has sort of just voluntarily taken it over. He just pops up throughout the day dropping pills into my hand or beside my cup of tea lol. He always knows what I need when, what I've taken, whats left. I don't even look anymore, I just pop em in and down them and try not to dwell on how many or what lol.

As for rainbow colored, I do have have one lovely medication that is not a daily, just as needed, that makes me pee brighter than an orange creamsicle!!! I kid ya not! It's actually kinda neat. Except my tongue goes this weird brown color and you can't wear contacts because the lenses would be stained orange apparently?!?! I've given up on my not working right hands and contacts anyhow, sticking to my glasses. Contacts only for special occassions.

As for the trip, it's going to be a LOOOOONG day. Right now my legs are doing much better (knock on wood) and some new medications seem to be helping them. I do know I'll be on the couch for a few days after, but I"ll be able to tough it out (with breaks through the day, the teacher knows and understands) in order to enjoy the mini getaway with easy child. She gets really sad when I don't join her in so much that we used to do together. I try really hard to always "supervise" her school outings. Apparently this time her teacher said during the free time (in between organized things like lunch, IMAX film etc) instead of my supervising a group, easy child and I can just do our own thing in the science center together, then band back together for the group activities. So I have a group of one , my own easy child, for much of the day She's super excited. It feels good to do things with her when I can, she's not got the mama she once had. She loves everything we do together now. We've taken to short morning Sat. and Sun. walks to nearby garage sales. Little mom/daughter lunches or movie outtings without SO or difficult child. Just the girls. She's tending towards clinging to me with accepting the new me, it tends to be better when I find new ways to do stuff one on one with her.

So I'll couch it half the week, but darnnit come Monday, my feet be walking in my new New Balance shoes lol.

PS. I hear ya with the chair. I have so far resisted all attempts for me to have a cane or a walker or a chair. Nope. Nope. Nope. One day it will come. But it is not today for me. I'm stubborn and I'm not giving in to it lol. It helps to have a strong SO to just heft me up and carry me about if need be Come to think of it, I could probably fake my legs being worse from time to time just so he'll lift me about and I can feel those back muscles. I'm soooooo bad

 

[Mattsmom277]

Oh and Janet? I know you'll appreciate this!! My SO was laid off a few months back. So .... drumroll .... he's joining the Air Force We're nearly done the process of applications, he's done the interviews, medicals etc. They are just proving he isn't a terrorist or anything now lol. And he should be signed shortly, hopefully in a week or two. He begins a 2 year training program in avionics to work aircraft radar systems this September. We'll be able to stay here where we are for those two years and then we'll get posted who knows where. There's a possibility of Colorado which I'm totally psyched about!!!! Anyhow, I know you and your military family and figured you'd think its groovy

 

[DammitJanet]

I resisted on the chair too until last september. I had a walker and a cane for a few years. I had the walker that they call a rolator with the seat and a little basket. It comes in handy if I am just going to be walking around say a small store or maybe even a mall because I can sit if I get tired. And if I get really tired...they can push me around.

Keyana likes my walker...lol. She used mine almost as much as hers when learning to walk...lol. Now she just pushes it around the house and climbs up and sits down.

I got my chair just a month before I really needed it which was when I lost the use of my arms and legs due to the meningitis. Little did I know just how much I was gonna need it! I really had to learn all over again how to use it though. I couldnt even push it with my arms at the beginning. Heck, I couldnt feed myself.

 

[DammitJanet]

That is great! I am sure you will enjoy it. Jamie is completely out now. He was due to leave for Iraq when I got sick. He had actually served his 4 year active tour of duty and been out of the Marines and serving his 4 year inactive reserve years. He had already served over 2 and a half of those years when they recalled him to active duty! He had a new job, new baby, new wife, and a new house. It really was bad timing...lol. But the military doesnt really care about timing. Jamie tried to get out of it because he worked in law enforcement but they didnt give him that deferrment.

Anyway...Jamie got all his ducks in a row and got military leave from his job, got everything set up on the home front, and came down to our house so he could spend two weeks with us before he shipped out. He, his family, and his Dad all went to visit their paternal family in SC - about 6 hours from me. Billy and I stayed home because he had to work. I ended up getting meningitis sometime over that friday night...the day they left. Billy couldnt wake me up early that Saturday morning. I was talking weird the night before and Tony called me early that saturday morning and I didnt answer my phone and Tony had Billy go check me. They had me taken by ambulance to the ER.

Jamie and the crew turned around and came back home that same day. I didnt know nothing else for about 10 days. I was in a coma.

Jamie had to report to the Marine base at Camp Lejeune on 11/4 to ship out to Iraq but the kids (Billie and Billy) had got ahold of the Red Cross and they had sent paperwork to the commander at Lejeune about me and they met Jamie at sign in and told him that he was being released from the Marine Corps early. As of that day, he was no longer in the Corps. That they felt he was more important to his family because the doctors felt that I might not live and that if I did live I could very well lose the use of parts of my body. It could also take over a year to completely recover.

So it was mighty nice of them to give me back my son...and it only took me almost dying...lol.

 

[flutterby]

The pill that makes you pee orange is pyridium. I find it really helpful from time to time, too. And I know it's going to make my pee bright orange, but it still manages to surprise me every time.

I'm always worried that I'm going to get caught off-guard by a sneeze and not get my legs crossed in time. Would hate to be in public with an orange spot on my pants.

I got my cane last summer. It wasn't an easy decision, but I need to be able to get around. Thankfully, I don't need it all the time.

 

[FlipFlops]

Your stories were so funny. I got a real giggle. I think my fave was the chamydia (sp?) plant though... I need a bigger smiley face for that.
I have a funny story about the orange pee. When I was 4 we found out my bladder or kidney (don't recall which) was not shaped correctly and would need to be dilated. I had been having recurring urinary tract infections. Either before the dilation or after, I was put on the medication that makes you pee that flourescent orange. I also had a major problem with when I had to go, I had to go right that very second! I was playing at a friend's house and one day and didn't make it. I made it to the bathroom but didn't get my pants down fast enough. I wet myself and it made it to the carpet or rug. It stains and the mom had to throw her bathroom stuff away. My mom knew it was an accident of course but was still embarressed. We had just moved there a couple of months earlier too.

 

[Marguerite]

I"m currently taking a vitamin supplement (one of those effervescent ones) to try to give my body a chance against all the chest infections. And it makes the pee orange.

As for the lack of control (especially when coughing/sneezing) - I've been wearing those incontience pads for some years now. VERY glad of them lately!

Pills - I've cut back on them over the years, I hate taking more pills than I actually need. But one strong painkiller I take is in a sustained-release form in a capsule. It looks like tiny white beads inside a clear gelatine capsule, and it rattles. YOu can hear it rattle asit goes down the throat - it feels/sounds freaky!

I used to use a wheelchair but these days I use an electric scooter (one of those litte old lady mobility aid thingies). It gives me independence of movment. Where possible I walk these days, but I have my limitations.

I used to try to do without my crutches and instead hobbled everywhere, but one day I was organising a conference at which my specialist was guest speaker, and he was taking mental notes while he watched me hobble around. Next time I saw him, he told me off for not using my crutches. "You'll wreck your knees & hips too fast, at this rate. Use the aids, you walk more naturally with them and in fact it looks LESS obvious."

He's right. So these days, I do. Around the house and on familiar ground/short distances, I can generally manage. But in a crowd, on unfamiliar ground, in the dark - I use the sticks. I do occasionally get people who don't know me saying, "Oh, you poor thing - what have you done to your leg?"
My usual reply is, "Don't worry, it's how I am, it's been like this for a long time."
If they persist I say, "It's not my leg, it's my whole body. The stick just makes it a bit easier for me. Honest, I hardly think about it these days. I just get on with things."

The funny thing is when I hear it form people who have met me several times before, but who just haven't noticed.

So it's not always obvious. Using the aids makes my movement much more natural.

Marg

 

[Hound dog]

If we don't laugh, we cry.

When I had the nephrosotmy tubes in the kidneys I had to wear a bag on my leg to collect the urnine when I went out. I had to get uh rather creative about what I wore. lol Discovered quite quickly that using the bag in the house wasn't practical. If my moved my leg just so........I'd suddenly find myself on the floor in horrid pain from urine backwashing into the kidney. So I'd use the bag they use with catheters, it also had a longer tube. While cleaning.......I'd hang it on the counter. But I'd always forget and walk to far.

I used to call it my leash. lol

And I hope never to have it again.

I've messed up medications before. But husband is worse than me. When my shoulder was broken and he was supposed to be despencing the pain medications (head injury too) I couldn't stay awake. Which is weird as pain medications I'm used to thanks to the kidney issues. I finally asked for a clock by the couch.......come to find out he was giving them to me every 2 hrs!!! When they were dosed for every 6! I did it myself after that.

(((hugs)))

 

[Marguerite]

Lisa, I had a catheter bag for a few days. I was supposed to have it for 6 weeks, including while on holiday in the snow. The whole assembly was very impractical, the bag position kept sliding down my leg down to my ankle! I remember going to the loo - I was in a wheelchair, walking with this bag was agony - and all I had to do was put my foot up on the edge of the loo, get the end of the nozzle which was beside my ankle and turn the tap. No undressing at all, I thought it was very funny! I anticipated that on our holiday I'd be able to write my name in the snow better than the boys, and without getting cold from undressing!

But it got too painful, I was at the doctor a day later begging him to take the thing out.

Marg

 

[Mattsmom277]

Wow, so many people using the pee orange medications lol. It is ironic on here how many have similar issues.
I'm working up the guts to be 33 years old and have times using a cane etc. I always get looks when I see people out one day and I'm limping and my body is crinked and then next they see me I'm strolling leisurely by the lake or something. Its strange having a disease that one day can mess you right up and another day you look perfectly healthy. People are so prone to judgement, and I hate explaining myself (so I don't).
Janet, sorry it took you being so ill for your son to get his discharge! But I'm glad to hear that he did get it. Sounds like he'd really gotten on with his life and serving again would have really messed that up. Not to mention once you decide you are getting out, you really are just ready to be out!!!! I wasn't sure of my login info for here when you were ill but I was reading daily and praying and checking for all the updates. I'm so glad to see you recovering so well!
Marg, you are a trooper and you always make me smile in your posts lol.
As for laugh rather than cry thing, defintely my motto, although sometimes I can't manage it lol. I do what I can do
As for today, I'm having one of the good days

 

[DammitJanet]

Glad you are having a good day. Im having a not so good day. Think they changed a medication...well one came from a different generic maker. Argh. Its a different color this month. I asked about it when I noticed and they double checked it. Same medication but different manufacturer. Blah. I feel different.