Sunday, May 29, 2011


So I have finished my first four weeks on Avonex.  I did half doses so ease my body into the med.  Here's how I have reacted:

*I'm moody.  It comes and goes.  One minute I'm feeling optimistic and the next minute I feel like this ms is going to kick my butt.  I really don't like this.
*I have a rash on both my thighs.  Yup, about 2 inches all the way around the injection sites.  The doc is not too worried about it, and it seems to be getting better so we'll see.
*My legs ache.  This comes and goes throughout the week.  Not sure if it's the ms or the med.
*I think I'm more tired than before, especially a couple of days after the shot.

Well, that's about it.  Not too bad, I know.  I would really feel better about this med if the ms would just calm down.  I'm still getting new flare-ups.  A couple weeks before beginning the Avonex my feet got the numb/tingling thing.  I still have it, but it seems to have eased up on my insteps and is worse on the first 3 toes of each foot.  Lately my legs feel tired, also.  This scares me the most....

So I will try to stay optimistic, although it's difficult.  In a perfect world (well, we wouldn't have ms in a perfect world) but it would be good if I could just get symptom free and see how this Avonex will work for me.  In the past when I have gotten flare-ups, they were very minor and always cleared up.  I'm not sure what's different now.  I can't help but wonder if I am doing something different.  I'm eating better, so it's not that.  Could it be the stress of it all?  Any flare-up adds stress to our lives, so is it a viscous cycle...stress making the ms worse and the worse ms making us stressed?  Although I've dabbled in meditation, maybe it's time to really be serious about it.  Anything is worth a try....

Wednesday, May 11, 2011

Your body believes everything your mind tells it...

I truly believe this.  I think we can control a lot of what goes on in our bodies with our minds.  I was reminded of this when I was reading over a site that I recently found.  Here it is:

The creator of the site, Rebecca Hoover, has been living (and living well) with ms for many years.  She feels that diet, exercise and a positive attitude have been the key in keeping herself attack free for much of her life.  I stumbled onto some interesting research that found that people who resigned themselves to the fact that they would be limited due to their ms and worried excessively about their futures actually suffered with more physical issues than people who were optimistic about their futures.  Here's the article:

Ok, I do try to be optimistic, but what person with ms isn't worried about the future?  I guess the key is to keep the worry at bay and to not let it interfere with your hopes and dreams.  I have been trying to practice this the past couple of days and it does seem to help my emotional state.  I try to practice positive self-talk and so when scary thoughts enter my mind (like "what if I can't dance with my sons at their weddings") I realize the harm that the thought can bring to me (emotionally and physically) and turn it around so I am telling myself "I will dance at my son's weddings".  I even picture a healthy, energetic me having a great time.

We may not be able to cure ms, but we can beat it.  I will not lay down to this disease.  I will fight it every step of the way because it is not welcome here!

Monday, May 9, 2011

I did it!!!

That's right.  I did my first injection of Avonex.  Here's how it went....

I got a call from Biogen wanting to set up my delivery of Avonex.  I am still in the waiting process, but got a free month supply so that was being sent to me.  The representative asked if I needed a nurse to come and show me how to do the injection.  She caught me off guard, which was good, and I just "sucked it up" as my son would say and said, "yes".  The nurse contacted me and was able to come on Friday afternoon, which is when I thought it would be best to do the injection.  She was great.  She spent about an hour with me and it was finally time to do the injection.  She kept saying, "just do it... go ahead and do it..... just do it"..... and I did!  It really didn't hurt at all.  The needle went in easily and it was truly no big deal.

My doctor only wants me to do half a dose for the first 4 weeks so my body gets used to the med.  It did make me tired and gave me a headache, even with Alleve.  Nothing I can't manage.  I really didn't feel myself until about 24 hours after the injection.  Now I'm wondering if Thursday would be best for the injection.  I hate to spent half my weekend feeling poorly.  I think I'll give it a couple of weeks and see how I feel.

Monday, May 2, 2011

Stick myself with a needle where?

Well, it's almost time to begin long term treatment for the ms.  My doc feels that Avonex is the best treatment for me.  I did some research and I agree that Avonex seems like the way to go.  BUT..... the needle.  I REALLY don't like needles.  I know, I know.  Who does like needles?  No one.  But I REALLY DON'T like needles!  I can't even watch a nurse give me an immunization let alone give myself a shot.... in the leg.

My doctor agreed to let me come into the office and so the nurses could give me the shot and I thankfully agreed, but it's not sitting well with me for two reasons.  First, I'm a strong girl.  I always have been.  Not 'being able' to do this makes me feel weak.  Second, lack of control.  Now, if you know me, you know that I LOVE my control!  I would like to get the shot on Friday after work so I can get over the flu-like symptoms (if I get any) by Saturday.  If I get the shot at the office it would have to me mid week and that makes me nervous that I won't feel well for work the next day.

Right now I'm waiting for insurance approval and a NY state script approval.  After that delivery will be set up and once it's delivered, I notify the nurse and let her know I'm ready.  I know I should just buck up and do it myself, but the thought if it totally stresses me out!  I still have a week or two to decide so I'll continue to think (worry) about it and hopefully I'll make the best choice for me.