My new reality....

showed up today in a big brown box, delivered by UPS.  Yep, my drugs for the next 30 days arrived.  The Shared Solutions nurse is coming tomorrow to give me my formal instruction on how to give myself the injections.  Right now I have a bad attitude about this, so please keep me in your thoughts that I am at least civil to the nurse! It really is not her fault I have MS  .....

Goodbye Limboland, I wish I could say its been fun! Informative, yes but definitely not fun.  Any clue what the name is of the next destination for this journey now that I officially have RRMS?

Do any of your copaxone users have any final tips for me?

Be well,
Lulu

[Quixotic1]

yeah....that box and the FedEx person make it all sort of too, real.  I didn't like that first delivery either. After I got the stuff into the fridge - where it takes up room - I threw the box as hard as I could into the garage.  It landed at my feet.  Reality Check.

Good luck.  Don't beat up the nurse.  She's innocent in all this.

Well, I have always said that this forum is for the UnDiagnosed, the MisDiagnosed, and the Diagnosed, but P*ssed Off!  I think you're there.

Take heart.  This is the first step to challenge what has been tearing you down.

We are the Warriors

[Deb61]

Just don't start stabbing yourself in the leg when you get p*ssed off--it accomplishes nothing.  

Most of us go through this anger stage.  Believe me, I've been there!  I still revisit this stage every once in a while and have to place my head on straight.

One tip is that I'd have the nurse show you how to do manual injections as well as the AutoInjector (if you plan on using this). That way, you can manually inject yourself (when calm of course).  I do much better with the manual injections.  

Best of luck,
Deb

[GrannyJo6]

I've been self-injecting for 6 or 7 years now and it really will become routine. I tell myself I am doing something to slay the dragon even if I can't see any immediate results.

My neuro gave me my first shot and I took it from there. Scared half to death the first time, but survived obviously! It is absolutely normal, though to be afraid and angry!

You have lots and lots of support here and you will probably get some numbers to call for help with your copaxone, too.

Go out there and start slaying that dragon! (Not the nurse! Don't shoot the messenger!) Jo

[Wobbly]

I can see how that can really hit home... I'm not there and not dx yet so don't quite understand the whole thing..but I can imagine how it must feel...life changing eh.

well, take care and know you are not alone...

Hugs
wobbly
undx

[JENNIEO]

I'm just on my second box, and you are right, that first delivery was one of those surreal moments in my life - just as shocking as the death of my father and birth of my kids - just something you never expected to have to deal with.  I can say that honestly giving myself the shots has not been a big deal at all.  I have my computer and cell phone both programmed with an appt so I hear a chime when it is time to do it, and Shared Solutions is more than supportive - they call OFTEN!  It's like Jo says, I feel like I am at least taking part in some activity that may help slay the dragon.  Gotta believe it's doing something to help!

The nurse will probably suggest a heating pack (they sent me a gel pack) and I found that to be helpful, 5 minutes prior to injection.  It cut down on the sting that occurs shortly after inject (a bit of a delayed reaction there).  

Feel free to drop me a message if you have need to chat about this - and best of luck to you - just imagine that copaxone blocking the attacks on your myelin, like a martial arts battle taking place in your body (or whatever visual works for you!).

Smile!
-Jennie
dxd 8/4/08 - copaxone

[Lulu54]

Thanks all for the words of support/condolence/encouragement .... I especially like the metaphor of the dragon.  If you go back and read my journals - Stretching myself - you will see that dragon pops up in all of my writing.  In fact I think I may finally get a tattoo and have a dragon strategically placed.  Well, actually I won't, but in my fantasies I am thinking that would be the image I would select to permanently decorate my body! :-)

This is a new day for me!  

My best to you all,
Lulu

PS this still *****!

[cjacks]

L.

I hope you move out of this spot quickly. Maybe you could find some children's stickers, the ones they get wet and put on their bodied ... fake tattoo .. of dragons.  You could get funny ones, beautiful ones or scary ones depending on what kind of day you're having ...  I think I'm going to do this ( what a good idea :) :)   )  ..  It's been one though week for me too.!

Maybe we should have some kind of party tonight . You ,me, Rena,Sunny ..sorry  I've forgotten ( or couldn't read all the post) . I sure need a pick-me up.

I love Q's forth category  ' P*ssed Off '

Good luck and see you at the party.

Jo

PS Yup, it really does ****.

[essdipity]

Hey Lulu. This is a good discussion. Most of us have been focused for so long on just getting a diagnosis, just giving the monster a name, and just being validated, after years of being told there was nothing wrong. So the diagnosis is actually a relief. Your limboland residence was very short, but I'm sure you know what we mean.

Because of all this, I didn't even consider the anger aspect, and now I will start to. Guess it's about time. I hated limbo and I hate this disease. My fridge has a med supply too, but I shove it to the back so I don't have to deal with it except on Monday nights.

ess

[Lulu54]

Ess,
I have the knowledge of limboland from my heart problems - almost 7 months of chest pain trying to figure the cause and get it under control is pretty intense and frightening.  One missed beat there and its all over, you know?  We threw the MS into the mix in early July just to make my doctors have to work for their $$ .  So this limboland just felt like a continuation of my medical nightmare for 2008. :-)

Jo, I'll be at the party, but coming late. We have tickets to see The Capital Steps, a comedy troop that lampoons everytthing political - no one, no party is safe.  I plan on laughing a lot this first day of being peeved (hope the censors don't have to bleep that one too!).

Thanks all, I'm off to get my flu shot at 11:30 and then the SS nurse comes at 1.

Lulu

[Janette2836]

I can only imagine (isn't that a song  ?  :)  Since I am still in the "nothing is wrong with you stage" I have not thought about how it would be to finally get a name attached to the things that have been happening.  Thanks for being so honest with your feelings  - it sure gives me something to think about.

I will pray for this phase to pass quickly!

Janette

[OperaMBA]

Thank you for those of us who still possess a nameless, faceless affliction.   You help us to realize that more than just a name comes with a diagnosis.

My prayers are with you ma'am.

Richard

[sllowe]

Hey! She comes today! I'm a day late to say go ahead and get pssy w/those meds! Durnnit!

Mine sat in the fridge, while I put the nurse off for about a month.  Then, I wouldn't even take them out and look at them.  I didn't even want to see the needle.  Not that I was afraid of it.  Just, well, I was just stupid, etc....

Anywho, I saw it when the nurse arrived.  She was lovely.  Very, very nice.  Sat with all of us and explained everything.  She had a lot of MS patients under her belt and not only gave me the ordinary info, but info from her patients on techniques that worked for them.

Here's to your future Laura-Lu - may this disease be modified for you from here on out!

All the best today,
See you soon,
Shell

[Rena705]

Best of luck with this new step...I certainly hope it works our for you!  I know you are not wanting to face it but knowing you have MS and being able to have access to the drugs is very fortunate...it's just another way to look at it.  Good luck and keep us posted ok?

Lots of Hugs,
Rena

[spastic]

Another page is turning for you...  I understand the feelings you are feeling right now.  It does seem to enhance the colors of reality.  

Now about the tattoo....  A tattoo can literally open up a door to possibilities, I have thirteen of them and all of them symbolize an important step I have taken in life, my wedding ring is tattooed, (so I never lose it), an anniversary, my sleeve is the journey I have made in life, I have two Viking dogs symbolizing strength (the dogs is what the Vikings used to tattoo before a battle) it is so fitting for me now, fighting this arthritis.  

I think a dragon is suits you.......

Love,

Ada

[Lulu54]

It's done! I am officially working to alter this disease.  My daughter sat in on the training so I could zone out mentally and also be kind and not create any bad karma for myself.  :-)  

The SS nurse was kind, but probably already on social security and supplementing her income with this day job gig - beats being a greeter at WalMart, I guess. That's all I will say publicly.

The first shot went fine - it still stings a bit so at least I know something is working in my body.

Here's the news the SS nurse did tell me that is worth while sharing - she says Teva, the mfg. of Copaxone, is working on a generic version to make it affordable to everyone. They just purchased a major multi-$$$$ production facility to make the drug.  Wouldn't that be wonderful?  I am lucky to have good insurance and this will "only" cost me $50/month ($600 a year for one drug, and I'm on a few others for my heart that cost this much too!) She told me a patient recently said they were billed $3,400 for their month of Copaxone.  She may have the stories somewhat muddled (think WalMart greeter!) but if it is even partially true a Copax generic would be a blessing for so many out there.  


Anyway, I have survived this trauma and am moving on..... thanks everyone for supporting me today with your kind words and gentle thoughts.

And I will consider that dragon tatt again .... you can't inject into a tattooo !!!  

Stuck,
Lulu

[Sarahsmom46]

OK, now I have an incentive to start doing my own injections.  I told you last week that if you have to learn to do your own injections that I will learn to do them too. My next injection is Tuesday and I WILL ask the nurse to show me how to do it myself.  If you can do it so can I.  

Julie

[GrannyJo6]

Doing your own injections gives you the power - you are doing something positive for your own body! Give it a try! There! Ha! One for the home team! Hurray for me! (Something like that, anyway!) Be strong! Be brave!

[Lulu54]

All,
The injection, especially since I have one of those nifty one-size fits all autoinjection pens was not particularly difficult or bad.  The injection was relatively painless (I started with my stomach) and I have no red spots from the first one so I take that as a good sign.  

my 85 y/o mom does her own Enbrel injections with a similar type device and also has not problems.  

So any of you hesitating, please give it a try and reclaim that power like GrannyJo says..... You don't have to like it, but you can do it!!!

My best,
Lulu