Well I have been on this medication for over a month now. The good news is that I have secured enough help to pay the co-pay until next December.
However, I have noticed something that I'm not sure is caused by the meds, or me.
I don't really care about anything.
That's it. I particularly noticed it last weekend at our local IPMS meeting and have noted that it's been going on for the past few weeks. I was listening to one of the guys talking about his build and I thought "I always wanted one of those, but what's the point? It'll just sit there and do nothing after I'm finished, what a waste of money" I never thought like that before. In fact I look at my builds on the bench and I'm not interested in working on them.
I noticed I don't sleep well which makes me a little irritable and maybe that’s the cause of this apathy, but I don't like it. If this continues I will stop the medication. I would rather enjoy my time than have a year or two extra and not care.

I have tried an over the counter sleep aid which makes me sleepy until I lay down, then I'm wide awake. I’ve tried a little shot of something adult, but that makes me feel odd and the same thing happens after I lay down. Now I'm on Ambien which at least for now, is not helping.
Starting next week, I have 3 weeks off without pay (not my choice…..and merry Christmas by the way) so maybe I can catch up on some sleep and see if that’s the cause.
I don’t like it, I don't like it one bit.

Hey Steve, at least that's some good news. Hopefully this medication will help. 

glad to hear this Steve.

sun? i have heard of that but we modelers tend hang out with a lot of artificial light. now if side effects included a bad reaction to plastic cement....

glad top here this Steve. sun? i have heard of that but we modelers tend hang out with a lot of artificial light. now if side effects included a bad reaction to plastic cement....

That's great news Steve...."Keep on - Keeping on!"

Tha's great news to hear Steve!

Don't feel bad about the sun issue. I have been in Florida for most of my life (just turned 60) and now I have become sensitive to the sun too. Kind of hard to avoid in the "Sunshine State" .

Modelcrazy Steve, my prayers are with you. I was so sorry to read about your disease, and pray to our Lord above that He will heal you. I will pray that He sends His grace to you, and that you receive it soon. Hang in there, Steve, and don't give up.

Gary Mason

Ron....I hope your CT scan came back clear. 

 Steve....I am truely sorry to hear this. Not only am I going to pray for you, but I will make sure my fellow church members do so also. I hope the foundation you are going to contact will help you cover the expense of the medication needed to help you FIGHT this. As BrandonK stated....PLEASE don't hesitate to drop me a PM and I will mail you a "Stash" package every month. Stay strong Steve, you will be thought of daily. 

Steve, I am so saddened to hear this.  I always think of when I first joined FSM... You were one of my first buddies when I joined this site.  Your kindness, encouragement and willing to get the new guys joining builds, talking, and chatting about whatever.  I really cant tell you how much I appreciated that.  It made things much more comfortable to start out and try new things.  

100% in my families' and my prayers.  All the best wishes and I really hope that new medicine will work and good news comes from here on out!!!  Keep fighting through it.  You have all our support my friend!

Cody J

Steve, we'll keep you in our thoughts and prayers.  Hang in there.

Jim   

modelcrazy

Thank you guys for the heartfelt support.

I have an update. Yesterday I received a free month of the medication. Our insurance will cover %50 and the manufacture will write off $24,000 per year. This will give me with 6 months’ supply. I either have to come up with $20,000 to cover the next 6 months, or just take 6 months of meds per year. Either way, I’m ahead. I’m applying with Caring Voice Collation to see if they can help out with the remaining.
I’m taking this as good news. 

 

 

 

Steve

 

Ouch, well at least that's something. My thoughts and prayers Steve.

Thats good to hear Steve. Hopefully you can get some help with the remaining months.

Thank you guys for the heartfelt support.

I have an update. Yesterday I received a free month of the medication. Our insurance will cover %50 and the manufacture will write off $24,000 per year. This will give me with 6 months’ supply. I either have to come up with $20,000 to cover the next 6 months, or just take 6 months of meds per year. Either way, I’m ahead. I’m applying with Caring Voice Collation to see if they can help out with the remaining.
I’m taking this as good news. 

So sorry to hear of the worsening of your condition and I do hope you get some respite from it soon, I wish you well, and good luck I hope you are feeling more positive soon, it must be a real downer having something incurable, I take my hat off to you sir for living with it.

Oh man Steve, that is just awful. You are such an upbeat positive guy on the forum. My thoughts go out to you. Let me know if there is anything I can do.

Best wishes to you, Steve!

Thanks for the kind words Wayne.

for those of you who don't follow EVERY forum check out what Steve just finished. more details in the armor forum too.

http://cs.finescale.com/fsm/modeling_subjects/f/29/t/166280.aspx

Hi Steve,I wish you the best and am influenced by your wonderful attitude.  Hope there is a way to overcome the financial burden,  you don't need that stress.

Damned Steve;

 I think we all should stand back and be thankful for what we have , and what we have experienced .

 Remember there are advances being made every day . Maybe , just Maybe .

 Don't give up hope . I didn't . I have a heart condition that snuck up on me . Hereditary too . But I've made it to 72 . Diagnoses Twenty five years ago .Now have a Defibrillator/Pacemaker . Hasn't gone off since the implant date .Two years ago !

    My prayers and thoughts will always be with you and we will enjoy your presence .Gees man ! Get mean LOL.( mean folks seem to live longer , right ? ) LOL LOL    Tanker - Builder      P.S. Besides you're too young ain't ya ? Besides , You need a shoulder or two ? We all have big ones , man ,  feel free .

Steve, you are in my thoughts and prayers.  Good luck, and God speed.

John

This suks big time and you are way too young for this sh... Never give up as there is always hope. My dad had it some 35 yrs ago, lost 1/3 of his lungs. He was in a hospital coughing like crazy for 2 or 3 months. I don't know what the docs did but the whole thing just stopped. He is still around, age 85. We are thinking of you...