Life is changing Monday....
 

My stomach has been fluttering all day.....my eyes keep tearing....I know I will be fine, but I still can't get past the feelings of dreaded anticipation that my life is going to change forever on Monday. I start on my copaxone treatment that morning.

I have not been talking about this, because I am trying to put it out of my mind, but I can't. I've been avoiding the phone for a couple of days now, not wanting to answer questions and I certainly do not have the energy to pretend that am feeling strong because I am not, .....not at all. I feel completely drained.

I feel ripped off AGAIN!! I felt so ripped off for most of my 40 years because of being a victim to my sister's drug addiction. She will be 9 months sober on May 6th and I really felt that everything else was going to be so easy, because I had my sister back. I could not imagine anything could bring those painful "rippped off" feelings back. All I wanted was for her to be sober and back in my life, because those horrible feelings would end..... now I have to deal with this and I AM SO MAD!!!!!!! I don't want to be strong, I don't want this hand I've been dealt. Why couldn't I have had a chance to breath before starting on another crappy journey? I cannot be a victim to this!

Ughh. I am a blubbering and rambling on again...

I think I will make myself a cup of hot tea and try to relax :mad:

Bless Your Heart...
 

I'm keeping you in my thoughts. I hope you can find some comfort to help you during all these times when you have so much to deal with. You are not alone. :hug:

the first few times you inject the C is kind of scary. But, after a few days or weeks (depends on who you are I guess) it becomes normal...like brushing your teeth every day.

Are you going to inject manually, or with the autoject? I suggest that you learn to manually inject, easier and not as painful. (that autoject injects really fast!)

I'm a needlephobe. I cant stand getting shots when someone else is the one wielding the needle. Cant even watch, have to turn my head and close my eyes. But, injecting into myself, really freaking easy and it doesnt bother me to watch. (be kind of hard to do it with my eyes closed)

Whatever method you use, a good suggestion I can give you is to let the alcohol from the wipe dry before you inject...the alcohol can make it sting a bit more if it's still wet. I'm sure others will have their own suggestions.

Take a breath, and let it wash over you.
I feel like I've had a crap deal too. I feel really hard done by. But what can you do?
Start taking control, take the copax in your stride, and do what you can to maintain your health for as long as poss.
You'll cope.
I've never been one for 'one day at a time'. I was a worrier and a planner. Or at least I was until April 9. Now I'm so much calmer.
Our lives have changed. 'Nowt can change that.
Good luck. :hug:

One thing I did was name as many diseases and conditions I would rather not have. Most were more common than MS, and much scarier. So maybe this isn't so bad...

I agree, there are so many worse diseases than MS. I'd rather have MS if I have to have a weird disease that causes me all sorts of funky problems.

MS sucks, but cancer probably sucks a lot more.

I had gastro a few months ago which was so bad I passed out on the floor to the bathroom. That was scairy. I vowed I would stop smoking since the possibility of getting cancer and having chemo and the vomiting and nausea were too much for me.
I would SO prefer MS to chemo, cancer, treatments, surgery etc. I can deal with MS.
I haven't stopped smoking though... :(

Recalling my stint as an RN on Neuro, I was so inspired and moved by people who dealt with Guillian Barre syndrome. Hell, I can cope with this. (at the moment anyway :wink:)

and so can you...

Everyone deals with the hand they're dealt in their own way...in their own time. Yes, there are worse things than MS. And people with those "worse things" find their own way of coping. I try really hard not to compare my situation with others......each is unique in its own way.

Maybe try and look at Copaxone as a good thing....something positive you can do to slow the progression of your MS.

I'm sorry your sisters situation dominated so much of your life. It's time to concentrate on yourself now....and what you can do to make your life better and healthier. :)

We could be related! I feel exactly the same way.

My sister is still in the throws of drug addiction, and some pretty bizarre behavior. My mother will allow her to rip her off, steal, cheat, and treat her like garbage. This is NOT the sister I grew up with. I dont know this woman, I dont like this woman, and I have no intentions of allowing this woman back into my life to wreck it over and over again. I had to draw the line, and push her out of my circle. I feel ripped off! I see so many close families, and it breaks my heart all over again. its not fair!

but...I cant control her behavior. I cant make choices for her. she has to make the journey on her own. I was willing to walk with her for many miles, but she makes it too hard to stay with her. I will not allow myself to be abused anymore. I am standing right here when she is ready and able to come home. As much as it rips my heart out, that is the best I can offer. I raised her children for her so they were safe. I hid some of her child hood treasures so they were safe and not hocked. That is the best I can do for her until she can return home again.

I was again "ripped off" with MS. I survived breast cancer, and loads of other things, and I had done my time! I was in the clear! I was supposed to be able to get on with my life, and travel, and visit, and dance in the sun, and enjoy my hard won life. Too me MS meant a dragging leg, the constant need for rest, injections everyday. A life i didnt want nor would I chose for anyone

but...its here. My vision is more stable, the ON healed. I am working hard to not drag a leg, and have a wonderfully supportive husband. I am learning to look at the gift of everyday, and not the torture of having to endure another day. I didnt ask for MS, and I cant return this diagnosis, so I am going to try to do what I can with it. I will take my meds, I will do my exercises, and I will get up everyday, and put one foot in front of the other.

I know EXACTLY how you feel. I do hope you too can see the sunshine through the rain :hug:

No one gets out of this life untouched. But there are spurts of good. Really

Amy, you are going to be sooooooo disappointed! The shots are no more exciting than brushing your teeth, letting a dog out, doing the laundry, or shaving your legs.

Trust me, it will merely be one more of the mundane, daily pieces of your typical routine.

Look forward to the good stuff and don't sweat the small stuff, life is much too short! :hug:

—Copaxone 6 years.
—Beta 4 years

Just some :hug::hug: heading your way. Totally understand what you're feeling, so vent away. :hug::hug:

From a needle phobe, the copax injections became routine. Still ran from other needles, lol. but injecting oneself is easier after awhile. It was the wrapping my head around needing the injection that took a while for me.

Hang in there. :hug::hug:

I agree! With both of you. Dear Amy I also totally feel ripped of in the grand scheme of life. After a crappy childhood and working like a dog to get my life personal, professional and financial things in order along comes this miserable disease. :mad: Although if I'm totally honest I have also been blessed in many ways, shhhh don't tell anyone I admitted that.

As for the meds I look at them as the only postive here. Years ago people with MS had nothing! At least we have something. To me with every shot I give myself, 4 years now, I feel as if I have some power and am fighting the damn MS.

Hugs, good wishes and please keep us posted. Jules

Hey, you're one of us now, you'll make it through, just because..;) Whining, once in while also helps...we all do it.:)

I did the BIG Avonex needle and then the piddly little Copaxone needle..:D Copax was a cinch...I hope it goes as easy for you.:hug:

Thank you everyone for your support, it is really nice to have words of encouragement from those who truly know how I am feeling. My husband and family are so great to me, but they really just do not understand.

I know that I will be ok, I just need to get started on the treatment so these "weepy" tears of anticipation can take a hike! It is exhausting to feel this way, and I am going to enjoy this beautiful day darn it!

The first one is the hardest. The anxiety, the anticipation, the jitters, and the nerves! oh the nerves! I worried about being the only patient in history to have the dread immediate post injection reaction on the first try. The nurse assured me that she has never seen, nor read about ANY patient having it on the first go. That relieved my worried mind.

I will tell you it has a bite to it in the early days. it gets MUCH better! MUCH!

After the injection is over, doesnt matter if you use the injector or not, take your cotton pad or ball and PUSH directly into the center of where you injected. DONT RUB! copaxone is a sharp crystal style drug and rubbing fractures the crystals. Just push. Hold for 15 to 30 seconds. This pushes the drug from the upper layer of fat to the deeper layers where its more easily absorbed, and will help keep those lumps little ones.

Some folks say it itches for a day or two. Hydrocort of benedryl cream really helps. I used Zyrtec or claritin tabs for the first few months and those helped.

Have a treat ready. a popcicle, a good book, a saved or taped TV program. and give yourself a huge pat on the back.

A journey of a thousand miles begins with a single step. I have my shoes on, and will be waiting for you. Copaxone is pretty trouble free other than some minor things, like a lil itch, or a baby lump at the site.

YOU CAN DO IT! We are cheering for ya.! :cool:

Copaxone was the first DMD I tried. Before I did that first shot I was soooo anxious. Felt just like I did as a child when I knew I was going to get a shot at the doctor's office! :o I worried and fretted over it for days before I did it. Once I did it I felt so silly......this was what I was all worked up about?! I almost thought I'd done it incorrectly at first because there was really nothing to it. It's so small. But I'd done it correctly. I even called the nurse and she got a good chuckle from it! She said "yep, the anticipation is the worst part of it all". She was right!

You'll do just fine. And you'll be proud of yourself. Give yourself a treat 'cause you earned it! :)

:hug: Amy! Some of the events in our lives are hard to look at sometimes. Allow yourself to feel what you're feeling, then keep on going anyway. The shots will empower you to do something about your illness. Make MS the victim in your thoughts every time you give yourself a shot...And remember you have a lot of people in your corner!

Amy when I started my Avonex I saw that needle as a sense of empowerment that I had OVER this disease! I am an RN and was afraid. But it does get better. I'm sure if you came on here as you are preparing to give yourself your shot there would be someone here to go through it with you.

MOnday is here! woo! come on back and tell us how proud of yourself you are.


The first one is the hardest. After this one, it gets better and better. :cool:

Ok, you were all right ! I got through the first shot this morning with only a couple "weepy, I feel sorry for myself" moments. The nurse was fabulous! After a few "practice" times, I just went for it and I hardly felt the needle either.....:yahoo:

My arm did have some weird feelings for the first 15 minutes or so, I wouldn't describe those as painful, but more of an ache.

Now I feel a bit silly about being so anxious about it, but I got through it, just like you all said, and Yes....I am proud of myself!

Thank you everyone for your support, it really means so, so much to me!

:Thanx:

WOO HOO !!! you rock star!

We have ALL had those first time jitters. its really scary to poke yourself with a needle full of who knows what.

Congratulations! way to go! :hug:

:You-Rock: That's great news!! I'm sure we all did the same thing with our first shot. Getting the dx of MS is scary enough.....then to have to give yourself a shot, too. It's alot to get used to. I'm so glad the first one went smoothly for you. Getting past that first day is a great relief and a reason to be proud of yourself. :)

i'm glad your first shot went well amy. i'm proud of you.
i've been on C since '03 and it's gone very well. it does get easier. i had shot reactions (locally) at first but that has subsided very much. and, my MS has been pretty stable.

it will be come routine after a while.
once you get into a system it'll fall into place.

it's ok to be angry. any emotion is normal. i understand. feel free to come here to unload. we get it. :hug:

CONGRATULATIONS! I was really nervouse the first time too. I have never been afraid of needles untill I had to poke myself. Tha twas hard to do, but it didn't hurt and I got through it.

Amy, sending you (((HUGS))).

Hello again! So I did my first "at home" injection by myself this morning and I chose my left thigh. :yikes: That hurt so much worse than my left arm and it is still swollen tonight. I sat on the floor with my legs stretched out, so my muscles wouldn't be engaged, however I stood up right away because it really hurt and I wanted to get an icepack on it and of course, the ice packs were upstairs in the freezer. Do you think it hurt and then swelled up because I got up too fast....or is just an injection sight reaction and something to get used to?

Arm = didn't feel the needle, hurt as meds were settling into my arm and I have a small black and blue bruise.

Thigh= didn't feel the needle, hurt way more and swelled, but no bruising....... I just think it's weird.

Now I have to decide where to choose where to do it tomorrow...I just know that it's not going to be my right thigh!

Where on the thigh did you do it?

The tummy and the hip were my fav spots. Hated the arm and the thigh.

Better luck tomorrow..:hug:

I did it right in the middle of my "lap", and off the top and a little towards the outside of my thigh...does that make sense?

I figured that my stomach would be my next try, thinking that since there is absolutely no muscle there that maybe, just maybe it won't hurt so bad? :Hum: :D

Well done. You're doing great!
I've just stuck myself with Beta and it hurt like hell into my thigh. I bruise so badly after them all that I'm running out of space.
I prefer belly and saddle. Belly was hard to put the needle into first time. Ended up resting the needle tip and breathing in deep. My belly rose to meet the needle as it were. :)
I've lost 30lbs recently. I wasn't fat before, but now there's not much to stick into.
I hope it continues to go well for you. :hug:

Amy,
I've done about a month and a half of C, and I find that my thigh is the worst place of all! I have more pain/reaction with it. I see nary a reaction from my belly as far as bruising/welts/etc. But my thigh will stay hot for 5 days, and be itchy and sore.

So you'll figure it all out in time, and avoid those places that aren't any fun!

My thighs have a huge muscle strip along the top front. I try to avoid that area. I lean off to the side wall and find MUCH more fat pat to shoot. You dont have to stick to the chart. I use upper outter thigh, and just outter thigh. I almost never use the top sides, and if I do, its manual at a 45 degree angle.

Sounds like you smacked the muscle. As time marches forward, you will learn your body, and where the best picks are for poking.

hang in there. Tummy days are great! no muscle, all fat! woo!

Yeah, figured I hit a muscle. My "recovering" sister thought so too...I find it so ironic that she did it on purpose every day and when she finally stops after years and years, then it's me that has to start "shooting" up daily! Hey, have I been Punked? (Sound familiar?)

I was just wondering today what was so special about the "designated" areas for the shots.... would it really matter if I alternated between 4 areas instead of 7? I am a "by the books" kind of gal too and tend not to deviate...but I'm feeling a bit snappy today and might just break a rule someday!

So far I found the thigh to be horrible, my inner left arm is still bruised from Monday, tummy was no big deal at all and neither was the hip. Today I tried my right arm...more on the bottom side and only see a light bruise. I am a bit gun shy to try the thigh again but I think I am going to go to the "outside" to be adventurous :D

Amy, be careful with the depth of your injections, after much trial and error (and bummers), I learned that I was going just a tiny bit too deep.

Forgive the question, it's strictly pragmatic: Are you very lean or do you have some "insulation"? I'll defer to advice of the lean ones, I'm well insulated and for the last two years, I stuck with the hip/butt and belly. The belly are the easiest for me.

Watch out on that outer thigh idea, it hurts!

Are you using the auto injector? or going manual? it makes a difference.

Injector rules
If you can pinch at LESS than an inch go for 4
If you can pinch an inch go for the 6
If you can pinch a fat inch with a nice pad go for 8
If you can pinch 2 or more inches go for 10

If you cannot bring up that inch, or keep smacking muscle in that area, you may have to shoot manually, and use a 45 Degree angle.

I go long periods of time without using my arms. They stay quite painful for a long time days/weeks after using them. I just do a double bum bum shot. Lots of real estate there.

I am 98% manual now. I only pick up the auto inflictor when the husband isnt home to help on bum bum days.

I dont stick to that chart. I stick to MY body, and where MY fat lives. There is NO fat on the front part of my thighs, only sore thighs if I poke them. I lean way off to the side, sometimes headed towards the back, cause that is where MY fat lives. On my hips/bum area, I use the full side wall. I dont just stick to that small area indicated on the chart. I go from the love handle all the way down to the upper thigh area. Tons of fat parts to pick on.

If you stick your thumb on your hip bone, swing your fingers around towards your bum, or pointed backwards. Spread out your fingers. That is a great fat area, with a solid fat pad to pick on. I go as far back as those finger will stretch, but wont go further. I have a friend who shoots her whole bum, upper, lower, middle and it scares me!

As time marches forward you will learn about your body and what works for you.

Hang in there. :hug:

I am using the Autoject, however when I was "learning" how to do that I asked the nurse about doing it manually too. She showed me how to do that, however I found that I am certainly not coordinated enough to do it that way since I proceeded to immediately poke my thumb and hand when I removed the cap off the needle! I think my tremors might give me some troubles doing it that way, however I will try again once I get a bit more comfortable.

When using the autoject, would it help if I "pinched" the skin(fat) before I hit the release - and then let go once the meds are pumping in?

They have a syringe grip. Call Shared Solutions and ask for yours. it slips over the needle/syringe body and provide nice wider wings at the top end to grab onto. It has saved me from having to use the auto inflictor several times. I have also found that once buried in my bum I can let go of the needle and it doesnt fall out. that gives me a chance to re grip.

There is plenty of time to learn both ways.