Am I selfish or just plain stupid?

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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 4/18/2008 9:00 PM (GMT -6)   
Hey all,
 
  I have been doing alot of thinking.  And my husband and I talked everything over and I have decided that I am going to stop taking rx'd medicine.  I have had ALOT of people weigh in on this topic.  I have been told that I am stupid for doing this, and I was also told that I was being selfish because this is gonna impact my childrens lives.  I am doing this because I think it's what best for my family.  I realize what this can do to me, but taking the medicine is getting to be close to an addiction (again).  For those of you who don't know....I was addicted to rx'd pills in my teens and early twenties.
 
  Jay (my hubby) says that he doesn't see any difference in my sypmtoms with the meds.  The pain pills have become a more than occational thing. And when I do take them, they don't help.  The betaseron is making me sick again and still leaving huge red marks at my injection sites.  It's getting to where I am sitting down and falling asleep while my children run wild and destroy my house.  With my children being so young (10, 6 & 3) I can't afford to be dozing off at a moments notice.
 
  I have been debating this for a couple of months now.  I have even made a pros and cons list and the cons far out weigh the pros for continuing.  I understand the consequences of my choice.  I also know what this could do to my MS, and I still think it's the best option.
 
What do you all think?  Am I wrong?  Should I just suck it up and keep doing what everyone tells me to do? Am I wrong for letting nature take it's course, so to speak?
 
Any input would be wonderful.
 
Love,
Heather 
 
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 4/19/2008 1:50 AM (GMT -6)   

Hi Heather,

 

First, I just want to state that the following are simply my opinions, and I hope I don’t offend you or anyone else on here with them. Personally, I don’t think you are being selfish or stupid, as you are trying to do what’s best for you and your family. I think it is always healthy to carefully consider what meds you take/choose not to take. As you know the ultimate decision must lie with you not anyone else including your docs, as you are the one that will have live with the consequences. You are so right that all of these meds have side effects. You must figure out if the potential risks outweigh the potential benefits, and it sounds like you have been considering these things carefully. I do however hope you will talk to your docs before discontinuing any meds.

 

 I would just like to point out that this decision does not have to be an “either or” thing; you do not have to take all the meds currently rxed to you or none at all…there can also be a happy medium. For example, you could taper off of your pain pills but stay on betaseron. The progression meds for ms are not addictive, so that isn’t an issue. If you are not able to tolerate the interferons, you could also look into trying Copaxone (although you would almost certainly end up with irritation at the injection sites on this med too).

 

Basically, you are discussing two different types of meds in your post. The pain meds are for symptom control, and the betaseron is for progression. If you discontinue your pain meds you may feel more discomfort. If you stop the betaseron it could potentially have negative long-term or permanent consequences. I am sure you are well aware of this as you make your decision, and will do what is right for you at this time.

 

I think you are relatively newly dxed and new to betaseron? If so, I also wanted to mention that there can be quite an adjustment period (both physically and psychologically) as you start these injections. It is fairly common to struggle with taking these meds in the beginning and to want to go off of them. If you haven’t already, I would suggest you talk to your docs (neuro? pcp?) about your concerns.

 

I don’t know how much my middle of the night ramblings will help you, but I figured I’d put them out there. These are really tough decisions, and sometimes it is hard to clearly see the best path to take. Best of luck to you!

 

Sunny


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/19/2008 4:26 AM (GMT -6)   

Have you talked through your decision with  your doctor?  Does he know about your past addiction problem?  There is also the possibility that Betaseron is causing some depression in you (which is treatable), and once you get through that, you'll be able to think through your decision more clearly.  It's also possible that he'll talk with you about switching to Copaxone, for example, which has much fewer side effects than the Betaseron, and might be better for you.

The falling asleep all the time - are you attributing that to the Betaseron, or to one of the other medications you're on?  MS-related fatigue will happen with or without medication, so if that is the cause, you'll not do much for it by stopping your other meds.  You'll liklely still fall asleep -- and need to let your doctor know about this, so he can work with you on ways to treat that, or work around it.

You say you and your husband don't see much difference in your condition whether you take the medication or not. You do understand that the Betaseron (or the other disease-modifying drugs, Copaxone, Avonex, Rebif) won't "change your condition" at all..but may slow the progression of the disease?  Multiple sclerorsis isn't like a disease where you can take medicine and feel better, see improvement -- it's medicine designed to slow the course of the disease so you don't worsen, not necessarily improve.

But yes, the decision does have to be yours, and your husband's, and your family.  They're all stake-holders in this, not just you.  If they all agree -- and you are sure you understand the possible consequences, then stopping the meds isn't life threatening (like it is with some other disorders). Just has the potential of life-changing.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 4/19/2008 6:48 AM (GMT -6)   

Hey Heather,

I want to address this more deeply but I am running out the door this morning.  I think you have gotten some excellent advice here.  Please know that we are NOT here to judge you.  Taking medication of any kind is your decision and we will certainly allow you that.  I would really like you to talk to your doctor too.  You need to consider another med for progression.  I know that copaxone was mentioned.  It has many fewer side effects and for the most part does not need any sort of med to reduce its side effects.  I don't think you are being selfish at all.  This is you thinking about what is best for your family and for your kids.  More later - hang in there.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/19/2008 12:49 PM (GMT -6)   
Hey Friend

Wow...what a decision to be facing. I see that u'r really weighing this and looking for sound advice and i think u've gotten some really sound advice here. These ladies have done an excellent job (Sunny!) laying all things out and clearly addressing them all. I agree that u really do need to talk to u'r doc (s) before just stopping them all. I have to say this tho...there is a diff in quantity of life and quality of life. U have a young family and i know u want to be involved in every aspect of their lives. U seem to be quite young too. U have a lot of life to look forward to. Weigh this heavily. As Sunny said, the betaseron isnt' addictive, but the long term affects of unbridled ms can rob u of so much. U have the chance to really fight this disease and to win those little battles that can add up to winning the war in the long run...but u have to use the tools u have to get there. Yes, u may have a less aggressive experience with ms, but do u REALLY want to take that chance and find out the hard way?? I so understand u'r fears and the past creeping into u'r current world. Keep all that in check as u are and eliminate the meds that are or can cause u probs...but maybe keep those that are helping u win the long term war. My heart goes out to u friend. I am so sorry u'r facing this, but as Gretchen said, we are here to support whatever decision u make. Please do let us know how u are and what u decide. Please also do speak to u'r doc about this.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 4/19/2008 4:14 PM (GMT -6)   
Hey all,

i don't really have a choice about giving up the beta. I don't have the option to keep going with it. My husband had to change jobs and we can't afford the insurance anymore. I can't afford to pay out of pocket for the meds and social services won't help with medical cuz we make $50 more than they allow for coverage. I looked into all the assistance programs through the pharmacy companies and I still don't qualify for help because my husbands work offers insurance. I don't want to stop the beta, but I just don't have a choice anymore. My husband only makes $300/week and we have $1200 a month in house payments and other bills. It's bad enough I had to swallow my pride and get food stamps to feed my children.

And believe me, I know what this is gonna cost me in the long run but I can't afford to pay for it anymore. I already owe my home delivery place money and I can't afford to go into debt any further cuz I can't lose my house and end up homeless with 3 children. I am stuck in that place where nobody can help me and I can't afford to do what needs to be done for lack of money.

And yes I understand that beta is not addictive, and it won't help my symptoms, but I have to put my children and their well-being before my own. The fatigue is more than the MS.  I also have Fibro fatigue to go along with it.  I have taken medicine for so long that I am begining to lose days.  I can't remember what day of the week it is or even what I was suppose to do that day or the next. I have gotten so tired that if I work 2 days in a row, I have to take 3 off just to recover from 5 hours of work over a 2 day period.  I walk and exercise as much as I can and chasing my 3 year old is a workout in and of itself.
 
I also know about depression.  I have suffered from depression on and off for about 10 years.  I know what I am like when I get depressed and this is me being realilistic (sp?).  I am only 30 years old, and I am happy and as active as I can be.  I wish I had more choices, but I honestly have exhausted all of my options with the execption of Social Security, and I am still working on that one as we speak.

Heather
 
P.S. sorry this one is so long.


Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro

Post Edited (Heather H.) : 4/19/2008 4:55:55 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 4/20/2008 8:48 AM (GMT -6)   

Heather,

You have a lot going on here.  I am truly sorry.  You need to talk to your doctor and see what he has to say about all this.  He may have some resources for you to try as well.  The other thing you could do is contact your local chapter of the National Multiple Sclerosis Society.  They have have all sorts of programs that can support you both emotionally and medically. 

I have read and re-read all these posts and I cannot think of anything to add that is really helpful.  I the only thing I can think of is that I would like you to remember that any decision you make in the near future does not have to be a permanent one.  Circumstances sometimes change.  If in the future your financial situation is better, you could go back to meds you opted to drop.  I know that addiction is one of your conerns but none of the progression therapies is addictive.  I would also think that you could check with the major drug companies (Rebif, Copaxone, Avonex, and Betaseron) and see if any would offer you support in receiving meds at a discount or grant type program.  They are all different and may have different ways to support someone in your situation.  If there is one company willing to help you, then see if you can get your doc to write a script for that med.

Your post is tragic and admirable.  Please know that you are in my prayers.  Please keep us posted as to how you are doing. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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