Who's behaving & keeping to their DMD schedule?

[sllowe]

Are you sticking to your schedule?

I've not been good. I've missed injections -  have become complacent. Am I the only one who needs hollaring at?

Shame on me -  I'm ashamed and throwing myself under the bus.

For those not on treatment, go ahead and fire away! I very much deserve it!

-Shell

[meg321]

You mean I can take a week off, wow, i didn't know that.

I also wondered if anyone missed an injection.  I am on copaxone and inject everyday and I have missed 3-4 times. One time I forgot to take it with me.  The first time I freaked out..but I seemed okay.  And sometimes i just forget to take them on time.

But I just found out that my MS is stable, so I guess its working.

Shell, you are too funny !!

meg

[Fluffysmom]

So far, my 9 months on Avonex have been totally compliant.  It really helped when I found out there was a little wiggle room, like I moved this last injection to Monday night instead of Sunday since I got back from my trip on Sunday evening and needed to let my meds sit out overnight.  I'd taken one dose with me, but forgot to take a second one so it could be at room temp for Sunday night; no big deal.

It's not always easy, as sometimes I have a muscle spasm that stops the 1 1/4" needle for a bit, or other stinging or pain issues, but it has been better since I found out I could use thinnner gauge needles.  Oh, I forgot to take my thinner needle on vacation so I had to use the huge one in the kit when I was at Lake Tahoe!  Yikes!  Aw, it wasn't that bad.

I'm having more trouble with my allergy shots!  5 little needles sub-cutaneous once a week, or every other week.  I didn't do them on vacation, so I should have done them yesterday, but it was my birthday, so I put it off until today.  Now I just dont wannna!  

I guess I can make it into a ritual like I do my Avonex.  With Avonex, I put on my noise-cancelling headphones with my I-pod playing some meditation music.  I sit and breathe, and think about how I'm taking care of myself, protecting myself, my body.  Then I open my kit (I use the powder form) and prepare the Avonex for injection, close my eyes and breathe, listen to my music, open my eyes, breathe in, and inject.

Maybe that will work with the allergy shots.

Shell -  you might not have time in your life to do a whole meditation routine out of your injections, but maybe you could give yourself a gold star for each one completed, like in elementary school when you did your homework, lol.  

No corporal punishment here, just please try harder to work up to your abilities (that's a comment I received on early report cards).  You deserve the best out of life, and if it takes poking yourself to get there, then please do it.  

Kathy

[jean_619]

Kristi --

Thanks for the reminder about how we should all be so grateful to have the DMDs!  With just you saying that, now I'm even more inspired to keep up my almost perfect compliance.

=)

Jean

[twopack]

I'm glad to see there are others out there as OCD about their meds as I am.

Does anybody remember the game on Sesame Street (I watched it with kids and grandkids) where they show four items and sing a song that starts, "One of these things is not like the others..."  Three things had a commonality and one was the oddball.  Like three veggies and one fruit.  I was starting to feel like the fruit.

Hey Jean, I only do the warm and cold packs on my thigh injections cause they had been the most reactive and painful.  It works but I don't find it necessary for the other sites.  I was so tired last night that I just warmed for 5 minutes, injected, wrapped my cooling collar around the site and went to bed.  I was asleep in seconds. Worked real well until I woke up thinking my bladder was having a personal relapse.  Not even really wet but my brain read the now warm pack that way.

Mary

[doublevision1]

I've been on Copaxone a little over two years; in that time I think only twice I didn't take it at bedtime - once I forgot, and once I remembered after going to bed and was to tired/lazy to get up.  I did my shot the next morning, 6 or 7 hours after when I usually do it, so I don't think it was a big deal.  I don't document my injection sites like I did during the first year.  I move around the sites regularly and always make sure I'm not injecting into a lump from the day before.  The nurse at the MS clinic who checks my sites once a year seemed flabbergasted that I hadn't missed more shots in that time, like really genuinely surprised.  I guess a lot of her patients don't do the same???  

I think I've had one call from Shared Solutions when I first started Copaxone.  They asked me if I'd like a call from them from time to time or would I prefer to call if I had any questions.  I chose the latter, I've never had a reason to call them, and they leave me alone which suits me fine.

[starryeyes1]

I have been on Copaxone for a year and have never missed a shot. I am sooo paranoid of; missing one. My dad has had MS for about 30 years and is in a wheelchair. and his left side is basically paralyzed. It is a constant reminder that I should feel so lucky to have the option to take something that might slow this disease down. When he got diagnosed, they didn't have DMD's.  I will do anything!

Kristi

[Lulu54]

I was so darn compliant the first year or so, and only forgot a few shots.  Now it's a different attitude - I've started to get lumps with the injections and a few times it's back to smarting pretty good.  My relapse is telling me I have to be more diligent.  - L

[jean_619]

I'm on Copaxone and I've been pretty good at taking it -- I've missed a couple of times over the last 2 months.  But like Julie said, sometimes I'm just exhausted at night and don't want to do it (since it is 1/2 hour routine when you do the hot and cold packs) -- but I feel the guilt and force myself anyway.

Plus, Shared Solutions calls me *at least* once a week to see how my injections are going and if I've taken all of them.  I'm a really bad liar, so I have to take them or admit my sins!

Jean

[twopack]

OK, so you helped me find the good thing about already having a routine established that involves taking a handfull of pills at bedtime.  The Copaxone bag sits there next to my weekly med dispenser.  It gets taken along with everything else.  

I've missed one dose in the four months since I started on Copaxone.  That was when I worked a 7pm to 7am shift and forgot to take my meds with me.  I did have to drag my settled body out of bed a few times after forgetting the whole batch.  That left an impression on my lesion riddled brain.  Guess I'm too prone to guilt to not get back up.

I'm sure if I felt good enough to forget I had this nastiness I could forget the DMD too!  Willing to try :-}

Mary

[sllowe]

It feels so good to not be alone in this hall of shame (good one Frank), doesn't it! It's so much of what we all enjoy here.

Thank you all for sharing that you do this too. I do procrastinate and this is something i/we just can't put off.

I took my Monday on time last night. Took it out early and left it there on the counter to stare at me just like the geico commercial - you know, "always feel somebody watching me." lol

ttys,
shell

[HVAC]

I quit the Copaxone in January. I got sick of fighting with the pharmacy and Copay assistance. Bad reason I know, but since I have PPMS I am not that worried.

Alex.

[Csativa]

Hi Shell,

No you are not alone.  I just started in early June w/ Copaxone.  I couldn't wait and was so impatient because the darn prescription plan was taking their "sweet time."

Thus far, I have missed 3 injections.  And there is reall no reason because it's not like I am having bad reactions.  I just plain forget.  So I guess you can include me in the hall of shame.  I'm not sure if I am complacent or just in such a fog that I just plain ole forget???

I thought I was alone in this and so thanks, I guess for being honest and prompting others to do likewise.

Yours in shame. lol

Frank

[Sarahsmom46]

You just stole the post I was going to throw out there a few days ago.  That's ok, I forgot to do it and then it seemed silly.  But....

I have daily injections and you would think they are hard to miss except for one thing, I wait till the end of the day and more than half asleep and in bed when I finally remember I hadn't done my injection.  

There have been a few occassions, problably more than I admit to SS where I just rolled back into bed and decided I wasn't going to do it.  

So, chickie, you are not alone.  Call it complacency, laziness, forgetfullness or just needing one day break, but we missed the dose.  I'm sure in the big scheme of things it is not a horrible thing but then I start thinking of all those people who need this drug too but can not afford it.  When I think of it that way, I get my behind back out of bed and go do it.  

Thanks for stealing my thoughts.  You can do that any time.  

Hugs,

Julie

[Guitar_grrrl]

I'm on Tysabri, and I just have to show up at the infusion center every four weeks.  They schedule my next appointment right there with me, and since I'm more or less self employed, I LIVE on that calendar!

[sllowe]

Lu - My mind does get the best of me w/it I've found. If I miss, in my head I shift my week to make sure I'm still getting in the 3 w/in the 48 hr schedule. In the back of my mind, I know I have 1  72 hr break that I can back into and then before you know it I end up w/2 shots for the week - not good at all - I know.

Ess - I'm not catholic, but sure have been working on a couple resolutions and this one I've broken more than once for nonsense the past couple months. Thank you for not letting me go under the wheel, lol

LA - everyother day leaves you at 4 - one more than me and I get no itching so I'll not complain and behave and do what I'm suppose to.

Ginosmom - I'm proud of you too! I don't know where this is coming from with me. Did you send that reason over to my door or what? lol

Thank you ladies. Today is Monday and I've always followed my M W F or Saturday schedule in the past, and I'm going to work on my committment to this beast and hit it hard.

Thank you all much,
-shell

[Ginosmommy]

I am pretty proud of myself in the month since diagnosis I have actually kept on tract. Like LATW I used to mark it on the calendar then I started marking that wrong or forgeting that also so now I am just on the remember if it's a M-W-F-Su Week or if it's a T-Th-S Week and just keep repeating it to myself!

I have found myself getting up at 2am doing the shot also, thank goodness I am on Extavia because if I had to take it out of the fridge and wait for it to get room temp I would be a mess! One of the reasonings I picked the non-fridge ones, I was forgetful enough before being diagnosed!

I have to give you ladies credit after being on it for so long, if you miss a dose here or there I can't say I blame you in the least. I have had those times where one bad dose and the next injection is the one I would like to give up on also, but I forge on (the reason is usually banging on the door though!)

MeLissa

[LATW]

I am on Beta and my injections are every other day and that gets so confusing sometimes.  I keep track on the caladar but if I forget to mark it then I really get messed up.  

My one big problem is even though the injections them selves really are not a big deal the injection site is.

I get very painful red spots and they itch.  I have reported this and it has all been checked out and they tell me to stay on the injections.  

The sore areas does make it tempting to stop taking the injections but my MS doctor will not see me if I stop.  He said ALL of his MS patients are on DMDs.  Probably why he will not call my situation anything other than RRMS even though he has explained to me I have gone past the full remission stage.  

LA

[essdipity]

Shell, we're NOT throwing you under the bus!!  So stop that talk, N0W!   Silly girl.

My avonex is only once a week, so I don't have a lot of excuses. However, I've found at that there's a 2-day leeway, so if I really don't feel like doing it on Weds, there's always Tues or Thurs. A bit of wiggle room helps, and I take advantage of it.

I spose it's human nature to mess up on this sort of thing at times, but we need to get back to the straight and narrow as quickly as we can. We don't want to jeopardize all the effort we've put in to manage our MS.

So take a deep breath, make a firm resolution of amendment, and get out there. Can you tell I was raised Catholic?  ;--))

ess

[Lulu54]

Wow, Shell.  I hope you put the flack jacket on today because I think you are going to take some hits here.

What part of class were you sleeping through when the importance of being compliant with treatment was discussed?  Maybe it was during the time we both raised our hands to be excused to the  girls' room because I've been a bit lazy recently, too.  LOL

Vacation schedules have thrown me off, but I'm still getting 6 out of 7 days right.  

doing these injections really is a state of mind more than a physical thing for me.  Each time it reminds me that I live with this MonSter.  

c'mon Shell.  Get with the battle plan here and back into the trenches with us.

hugs,
Lu