Family is pushing medication..

[Pres19]

I just need to rant and maybe get some advice on how to get my family to understand.

Some of you know and some may not know that I have a bone disease. "Osteogenesis imperfecta (OI)"
Pretty much it is a genetic disorder that causes my bones to break easily, I could do something very little or nothing at all and I manage to break something. I've already broken 300 and something bones. I've honestly lost count. What most people don't understand is that it effects so much more than just your bones. It can affect your growth, eyes, teeth, hearing, muscles and plenty of other things. I was told that I wouldn't make it to age 16. But I'm still alive and thankful God has had mercy on me. I understand it's only a matter of time until this disease takes my freedom or my life. I've accepted that fact.
There is medication I can take to make my bones stronger, take for the pain and that I can take for my muscles. I refuse to take any of them! This is my choice.
But my parents, family and my friends are all pushing me to do it. Saying that I'm just wasting my life away by not taking them. And that I'm being selfish because eventually this disease will take me and I won't be able to take care of my son.

Now here is why I do not take them..

For years my parents made me take medication that was supposed to slow down the effects of the O.I and make my bones stronger. I was on 10 different pills a day. I was pretty much a zombie. I never moved, I barely slept, couldn't eat, could barely walk, was practically dead, I didn't enjoy my life and while I was on these medications all I wanted to do was die. There was nothing else for me to do, I couldn't get up, I couldn't do anything so why not end my life since I couldn't live it anyway.
Eventually the doctors cut me down to 4 pills but I was taken them 5 times a day and I only got worse.

Finally when I was 15 my parents told me I could make the choice for myself. I chose to quit taken them. Actually, I just quit going to doctors all together.
NOT because I have something against doctors but because I don't care for medication. I don't agree with medication. I'm NOT saying by any means people shouldn't take them but I PERSONALLY do not want to take them and all doctors do is push medication on me.
Plus I feel healthier and happier just leaving it in God's hands.

I stopped taken them for years and even stopped going to the doctor for years. Until I got pregnant with my son.
I went to the doctor and I took medication for the sake of my child because it was no longer about me. It was about my unborn child. I was hospitalized for 12 days. I took all the medicine they told me to. I didn't argue, didn't go off on nobody, I kept my mouth shut and I did what I was supposed to do to take care of my son.
My son was born premature and he is on medication currently because some of the effects of the prematurity.

My family calls me a hypocrite because I make him take medication and I do not take it for myself. The reason why I allow him to take medication is because he is not old enough to decide for himself whether or not he wants to take them so until then it is my job as a mother to continue to take him to the doctor and get medical treatment for him until he can make the choice for himself.

Now..

My body is slowly getting worse. I knew it would over time. But now my family is going off on me because I stopped seeking medical attention 2 months after having Eli. I stopped all medication as well not even tylenol for a headache. Nothing at all.
My family says I'm being selfish, stupid and unreasonable.

I've explained to them..
I'm doing this because they will put on 15 different pills again. I would rather live the rest of my life in pain, knowing that without the medication my body will get worse faster, rather than take the medication and go back to being a zombie and not being able to take care of my child because of the way the medication makes me. I want to live my life to the fullest and on medication I can not do that. Either way my body is going to get worse and I would rather enjoy my life and let my body get worse then take medication that sucks the life out of me while my body gets worse.

I just don't know how to make them understand my choice. I don't think it makes me a bad mother or a selfish mother. I don't understand why its so hard for anyone to understand I want to feel alive and not dead.
I love my son. If I take the pills, I know for a fact I wouldn't be able to be the mother I'm suppose to be. I want my son to look back on his life and say "My mother did everything with me." Not say.. "My mother was so pilled out she never did anything but sit there."

How can I make them understand?
Am I really being a selfish mother?
Any advice would be greatly appreciated..

 

[BarlyGurl]

>>>>How can I make them understand? Am I really being a selfish mother? Any advice would be greatly appreciated..<<<

I feel so sad for your problem!!! The answer to question #1 is YOU CAN"T MAKE THEM UNDERSTAND, I stinks but it is true, they have their own idea and value about the situation which is in conflict with yours and they want YOU to do it like they would. I understand their perspective and I understand YOURS... and I also give you a great deal of credit for being firm about your decision in the face of opposition. You are NOT being a selfish person or a bad mother, choosing to give your son YOUR WHOLE PRESENT SELF vs a drugged-zombie mom is loving and AUTHENTIC to the Christian faith walk and I commend you for that too. The only suggestion I would make is perhaps you could tell them... If they continue to attempt to vilify and manipulate you about the matter in NOT accepting your acceptance of the situation, they might no longer be a part of your quality of life you are attempting to give and live. That is pretty harsh... but only you (with the Lord) can decide when it really time to sever the ties... and if that is required. Be encouraged... you are doing a good job.

 

[Willie-T]

I think you are right, and it is your life. I just prayed for you at 6:00 this evening.

 

[blondieindahouse]

I admire your convictions. It is your choice. I can understand you wanting your mind to be clear for your son. The only thing I dont understand is the tylenol thing. Wouldnt that help with some of the pain? Are there some of the pills you could take that would not make you a zombie and prolong function ?

 

[Pres19]

I admire your convictions. It is your choice. I can understand you wanting your mind to be clear for your son. The only thing I dont understand is the tylenol thing. Wouldnt that help with some of the pain? Are there some of the pills you could take that would not make you a zombie and prolong life ?

Thank you.
Tylenol is still medication. I just prefer not to take any kind at all. Tho I know there is nothing wrong with it, I don't want my body getting use to it being in my system. I don't want to depend on it to help with pain.

As far as other medication goes there are some others but they are stronger and higher doses than the ones that they would be putting me on and I have a feeling they'll do the same exact thing as the others. It just goes back to me not wanting to take medication and not wanting to risk being "zombified."
Sorry, I know I'm not good at explaining myself.

 

[Pres19]

I think you are right, and it is your life. I just prayed for you at 6:00 this evening.

Thank you so much!

 

[Pres19]

>>>>How can I make them understand? Am I really being a selfish mother? Any advice would be greatly appreciated..<<<

I feel so sad for your problem!!! The answer to question #1 is YOU CAN"T MAKE THEM UNDERSTAND, I stinks but it is true, they have their own idea and value about the situation which is in conflict with yours and they want YOU to do it like they would. I understand their perspective and I understand YOURS... and I also give you a great deal of credit for being firm about your decision in the face of opposition. You are NOT being a selfish person or a bad mother, choosing to give your son YOUR WHOLE PRESENT SELF vs a drugged-zombie mom is loving and AUTHENTIC to the Christian faith walk and I commend you for that too. The only suggestion I would make is perhaps you could tell them... If they continue to attempt to vilify and manipulate you about the matter in NOT accepting your acceptance of the situation, they might no longer be a part of your quality of life you are attempting to give and live. That is pretty harsh... but only you (with the Lord) can decide when it really time to sever the ties... and if that is required. Be encouraged... you are doing a good job.

Thank you! I cried reading this. (Good tears) I really appreciate it.

 

[BarlyGurl]

Thank you! I cried reading this. (Good tears) I really appreciate it.

Aww... your saying that made me cry back... THANK YOU!

 

[tourist]

I have said prayer for you and your precious child. God is with you always.

 

[Pres19]

I have said prayer for you and your precious child. God is with you always.

Thank you

 

[shotgunner]

I can't tell you to take the medication but personally I would try to make the choice that had the greatest benefit. In other words, could I take just enough or the right kind of meds to still be functional but at the same time possibly give me more years with my son.

Whatever your decision I strongly encourage you to learn how to get in faith to receive your healing. That means a lot more than just saying you are putting it in God's hands. It means getting in full agreement with everything the Word says about your healing.

 

[Pres19]

I can't tell you to take the medication but personally I would try to make the choice that had the greatest benefit. In other words, could I take just enough or the right kind of meds to still be functional but at the same time possibly give me more years with my son.

Whatever your decision I strongly encourage you to learn how to get in faith to receive your healing. That means a lot more than just saying you are putting it in God's hands. It means getting in full agreement with everything the Word says about your healing.

I understand what you are getting at but the just enough or the right kind of meds to still be functional in the doctors eyes are all the pills they have had me on. They don't believe lowering the doses would help me in anyway. They are pretty much set on the same thing.
However..

I do workout, eat right, and take physical therapy classes. I do what I need to in order to keep myself healthy. I'm healthier now than I was on the pills.

Thank you for the advice.

 

[tenderhearted]

Dear heavenly father, I pray for Pres... I pray that you would give her strength to care for her son. I pray that you would touch her body. I thank you that you have carried her all these years and that you have always been with her. I thank you that you gave her this precious baby. That you have a plan for their lives. LORD your glory is being revealed through her-- I am inspired by her story. Thank you for reminding me that you are a God that can be trusted. May others be encouraged to trust you, even in the difficult times. In Jesus name, Amen.

 

[blondieindahouse]

Amen...................

 

[zoii]

Sometimes I'm tempted to feel sorry for myself over certain things... then I read a story like yours. Your choices are yours to make. They are rational. I support your choice simply because you have obviously looked into and understand your options. This is no ones life but yours though obviously it affects those closest to you n you have already taken that into account.

So I just want to send you my heartfelt love n best wishes. Your a very brave n strong person. - hugs - Zoii

 

[Pres19]

Dear heavenly father, I pray for Pres... I pray that you would give her strength to care for her son. I pray that you would touch her body. I thank you that you have carried her all these years and that you have always been with her. I thank you that you gave her this precious baby. That you have a plan for their lives. LORD your glory is being revealed through her-- I am inspired by her story. Thank you for reminding me that you are a God that can be trusted. May others be encouraged to trust you, even in the difficult times. In Jesus name, Amen.

Thank you..thank you so much.

 

[Pres19]

Sometimes I'm tempted to feel sorry for myself over certain things... then I read a story like yours. Your choices are yours to make. They are rational. I support your choice simply because you have obviously looked into and understand your options. This is no ones life but yours though obviously it affects those closest to you n you have already taken that into account.

So I just want to send you my heartfelt love n best wishes. Your a very brave n strong person. - hugs - Zoii

Remind yourself everyday that the life you live, choices you make and things that have happened brought you to where you are now. And made you who you are.
It always helps me.

Thank you, Zoii.
You are a very sweet young woman. I love reading your post. You're always so kind.

 

[psychomom]

Pres, honey, you're doing what you believe is right for you and for your son.
no one can ask more of you than that.

my guess is your family is frightened of losing you.
i'm not saying what they're doing and saying to you is right, just offering an explanation as to their behavior.
(which you prolly already know... but if you put yourself in their shoes it might help mitigate the frustration and pain of their words)

i have prayed for you, and will continue to do so.
you're my hero! ♥

xoxo

 

[atwhatcost]

I just need to rant and maybe get some advice on how to get my family to understand.

Some of you know and some may not know that I have a bone disease. "Osteogenesis imperfecta (OI)"
Pretty much it is a genetic disorder that causes my bones to break easily, I could do something very little or nothing at all and I manage to break something. I've already broken 300 and something bones. I've honestly lost count. What most people don't understand is that it effects so much more than just your bones. It can affect your growth, eyes, teeth, hearing, muscles and plenty of other things. I was told that I wouldn't make it to age 16. But I'm still alive and thankful God has had mercy on me. I understand it's only a matter of time until this disease takes my freedom or my life. I've accepted that fact.
There is medication I can take to make my bones stronger, take for the pain and that I can take for my muscles. I refuse to take any of them! This is my choice.
But my parents, family and my friends are all pushing me to do it. Saying that I'm just wasting my life away by not taking them. And that I'm being selfish because eventually this disease will take me and I won't be able to take care of my son.

Now here is why I do not take them..

For years my parents made me take medication that was supposed to slow down the effects of the O.I and make my bones stronger. I was on 10 different pills a day. I was pretty much a zombie. I never moved, I barely slept, couldn't eat, could barely walk, was practically dead, I didn't enjoy my life and while I was on these medications all I wanted to do was die. There was nothing else for me to do, I couldn't get up, I couldn't do anything so why not end my life since I couldn't live it anyway.
Eventually the doctors cut me down to 4 pills but I was taken them 5 times a day and I only got worse.

Finally when I was 15 my parents told me I could make the choice for myself. I chose to quit taken them. Actually, I just quit going to doctors all together.
NOT because I have something against doctors but because I don't care for medication. I don't agree with medication. I'm NOT saying by any means people shouldn't take them but I PERSONALLY do not want to take them and all doctors do is push medication on me.
Plus I feel healthier and happier just leaving it in God's hands.

I stopped taken them for years and even stopped going to the doctor for years. Until I got pregnant with my son.
I went to the doctor and I took medication for the sake of my child because it was no longer about me. It was about my unborn child. I was hospitalized for 12 days. I took all the medicine they told me to. I didn't argue, didn't go off on nobody, I kept my mouth shut and I did what I was supposed to do to take care of my son.
My son was born premature and he is on medication currently because some of the effects of the prematurity.

My family calls me a hypocrite because I make him take medication and I do not take it for myself. The reason why I allow him to take medication is because he is not old enough to decide for himself whether or not he wants to take them so until then it is my job as a mother to continue to take him to the doctor and get medical treatment for him until he can make the choice for himself.

Now..

My body is slowly getting worse. I knew it would over time. But now my family is going off on me because I stopped seeking medical attention 2 months after having Eli. I stopped all medication as well not even tylenol for a headache. Nothing at all.
My family says I'm being selfish, stupid and unreasonable.

I've explained to them..
I'm doing this because they will put on 15 different pills again. I would rather live the rest of my life in pain, knowing that without the medication my body will get worse faster, rather than take the medication and go back to being a zombie and not being able to take care of my child because of the way the medication makes me. I want to live my life to the fullest and on medication I can not do that. Either way my body is going to get worse and I would rather enjoy my life and let my body get worse then take medication that sucks the life out of me while my body gets worse.

I just don't know how to make them understand my choice. I don't think it makes me a bad mother or a selfish mother. I don't understand why its so hard for anyone to understand I want to feel alive and not dead.
I love my son. If I take the pills, I know for a fact I wouldn't be able to be the mother I'm suppose to be. I want my son to look back on his life and say "My mother did everything with me." Not say.. "My mother was so pilled out she never did anything but sit there."

How can I make them understand?
Am I really being a selfish mother?
Any advice would be greatly appreciated..

If I took every medication my doctors through the years would have me taking, I'd be broke and something only fairly representative of who I am. I take what works for me. I don't take what changes nothing. Right now I'm trying to work with my doctor to see if I can cut back or get off medication for high triglycerides. He's finding out (if I can ever sleep at night to get the blood tests, yeeesh!) if those could be causing my memory problems and my hand tremors. He's the first doctor I've seen since 1994 that doesn't slap a medication as the knee-jerk reaction of something-wrong-with-her. (New doctor.)

But that's the thing. Many doctors will slap us on all sorts of pills. It's still our decision to take them. We're supposed to get information from them to find out if the pills have any affect so we can make up our minds. It's not their life. It's ours. So why would you think someone is putting a gun to your head to force you into 16 medications?

Cool thing about doctors. If we tell them that didn't work, it's not worth the side effects, I can't afford it, or simply no thanks, that's that. At worse they might roll their eyes one or two more times, but my experience has been they don't even roll their eyes once. They listen. (If they don't listen, that's the last time I see that doctor. lol) They serve us. We don't serve them.

So 15 pills makes you a zombie? Don't take those 15 pills. That doesn't mean one or two of them can't help you live longer. It means 15 pills turn you into a zombie. That little zombie girl in you is telling the grownup you things that she doesn't understand. Don't give her so much voice, but give her some voice. You know what is acceptable to you. Don't go past that. If one pill helps AND doesn't turn you into a zombie, what's wrong with taking that one? If two help AND doesn't turn you into a zombie, then take those two. If the third pill turns you into a zombie... well, you know? You do have a trash can! You seem stuck on all-or-nothing, when some may well be a viable alternative. It may not be, but you won't know unless you get the evidence.

In September 1971, Mom set us down individually to tell us the worse thing we could ever hear. She had cancer. Her words still haunt me. "Three weeks, three months, six months, who knows?" Being the eternal optimist and forever naive, at first I thought she was telling me how long she'd be getting radiation and chemo. How long she'd be dreadfully sick, before she got better. That wasn't it. There was no cure for her form. She wanted to live as long as she could for her kids. For us. Got to admire her for that. We saw much of what she was going through, but she also sent us to live with her brothers so we didn't see the worse. At the end, she sent word that we couldn't see her anymore. She didn't want to scar us. I ignored her order and went to see her. I saw her. I saw her cancer. I literally saw the cancer all over her and it wasn't originally skin cancer. It looked like a bad case of freckles -- so much so, if someone met her then, they wouldn't know if she was black or white. I do remember that. I also remember her eyes. They were 100% Mom's eyes. (Always, always passion and compassion in her eyes.) It left an impression.

I admire her for sticking it out for us. I wouldn't have made the same choice, so I see where you're coming from, but it's not an either or proposition either. Not for you.

In 1971, Mom was the first non-Asian to get that form of cancer. 0% chance of her being cured. (She went on a clinical trial because, "Even if it doesn't work, at least others won't have to go through this drug again." Not sure I'd make that call for myself either.) 2015 and it's still likely a person will die with that form a cancer, but some have lived. Research advances and it advances quickly. How do you know if research has advanced since you quit doing as doctors told you? How will you find out if it has, unless you see a doctor to find out? You always have the option to say no thanks or to go on some pills but not the ones that turn you into a zombie.

I think you're selling yourself short because the little girl in you never got the life she would have preferred. She has a point. I'd rather have a shorter life without being a zombie than a long zombie life, except she doesn't know there is another choice. You don't either.

 

[Pres19]

I think you're selling yourself short because the little girl in you never got the life she would have preferred. She has a point. I'd rather have a shorter life without being a zombie than a long zombie life, except she doesn't know there is another choice. You don't either.

I appreciate your advice but I have been on 1-2 pills before. They still do the same thing. Pills don't do me any good. I've been on plenty of different kinds and it always ends the same way.
I doctored for 2 months after having my son. While he was in the NICU I went out looking for new doctors, specialist and any new information they may have come out with. Nothing has changed. So I stopped going again.
I've made up my mind to NOT take medical treatment. I will not take any more pills.
I've kept up with new info and treatment plans over the years thanks to my friends aunt who specialize in O.I and treatments. There isn't much that has changed. At least not for my type.