Family is pushing medication..

[Pilkington]

I respect that you have taken a decision not to take any meds. I do not believe you are being selfish and you are trying to do the right thing for both your son and yourself. I also think psychomom is right about your family and friends. They will hate to see you in pain and want you to be around as long as possible. I am really pleased that you are trying to live healthily and look after your health to the best of your ability.

However please don't give up on there never being a new and effective treatment for your genetic condition and rule out ever taking medication. God can use doctors to help people. Medicine is continually advancing. I don't know anything about OI. However I wanted to share something in regards to another genetic condition I am more familiar with Beckers Muscular Dystrophy which is similar to but less severe than Duchene Muscular Dystrophy (DMD). In Europe now there is the first licenced drug treatment for DMD Ataluren (Translarna™). In Duchene Muscular Dystrophy there is a problem with the Dystrophin gene meaning that dystrophin is not made or not made properly. If there is a premature stop codon caused by a point mutation Ataluren makes the body ignore the stop codon and make a more normal copy of the dystrophin protein. This drug is also suitable for certain types of Cystic Fibrosis. It is so new NICE in the UK have not approved it yet. Also my interest is that it may be suitable for certain types of indivuals with Beckers Muscular Dystrophy which my husband has. The reason I am mentioning this is that I strongly believe there is going to be a proliferation of treatments for genetic conditions.

 

[atwhatcost]

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.

Oh, okay. Cool. (As if you ever needed me to agree with you, but that "cool" was I get it now. lol) I feared you were sticking your head in the sand. You're not. Just protecting yourself from the traveling I-can-fix-you show. As long as you can keep up in the field to see if anything does come along, that's all I was saying. Well, not really, because I can't keep up with the field with what's wrong with me. I'm not bright enough to understand medicalese language to know what they're talking about. So, I am mighty impressed you do understand, and so very glad you haven't given up. The don't-give-up is what I was suggestion, knowing full well the timing might be wrong for you, but it's not wrong in God. So, that "Cool!"

As for family? I can't remember the last time my family agreed with me. I'm not sure they have since I became a believer. They don't take to heart what I try to tell them and I don't take to heart what they try to tell me. Doesn't mean we don't love each other. When the chips are down, we really do know where we can turn. (In my case, that's not my full family, but it is some. I won't give up on them though.)

So family? Meh. Know they love you enough that they're going to keep pushing you to stick around as long as possible. That doesn't mean they'll hate you when you ignore the advice. I could already tell you're a strong-headed woman. They have had more years to learn that lesson. I wouldn't be surprised if that's a family trait. Let them be strong-headed too. You're strong enough to take it and you know how that can be a good thing.

 

[Angela53510]

I am going to disagree with both the OP and pretty much everyone else on this thread.

I am right now on 23 meds for my RA, Asthma, Hypothyroidism, fibromyalgia, etc, etc. I tend to forget what illnesses I have, I have so many. Now, I am not happy about being on this many meds, and I think I may be able to get off 4 or 5 of them. About 6 years ago, I was down to 10. But med failures have wrecked that for me.

I take those meds because they enable me to live a closer to normal life But more important, they allow me to be there and live for my grandkids. Last week, it seemed like the Fosadvance was making my RA worse, so I quit it. After all the prednisone I have been on, I have probably moved from osteopenia to osteoporosis. But I am regretting that decision, and I am going to stick it out and get the bone density back up.

Now I realize you have a genetic illness, but mine are too. Mine hurt severely daily, and my life is not worth living without the meds, the pain and deformities are so bad. So for you, you are probably thinking "But I feel better OFF the meds!"

Except something that no one seems to have mentioned, is that without treatment, you are going to get worse, and then who will care for your child? In 5 years, or 10 or even 15 years - your child needs you to be healthy not just now, but in the future.

So it seems like you are sacrificing your health to be a good mom now. But you are sacrificing being a good mom in the future, particularly if you become so disabled you cannot care for him anymore.

I would go back to the specialists, and find out what the minimum drug dosage and number of meds you can be on to reap the maximum benefit, with the fewest side effects. And educate yourself about the side effects of the meds. In Canada, we have the doctors manual on drugs and side effects and interactions. It is called the CPS. Very expensive, but at one point, one of my doctors told me I was too complex for him and gave me an earlier year edition. He told me to look up my drugs and carefully see what the side effects were.

I did, and I found two particularly bad drugs, for allergies and for migraines. The allergy med was putting my liver into distress, the migraine med my mind was just gone! No memories. So I went off of them. I won't take a new drug unless I check it out myself, and find out what is really going on. And no, I don't understand all of what they say, but side effects and drug interactions are pretty easy to find out.

I will pray you will reconsider your no med decision. In the end, it is your decision to make. But try to remember your family cares about you, and they are concerned about the long term consequences of not taking these meds!

 

[Pres19]

I respect that you have taken a decision not to take any meds. I do not believe you are being selfish and you are trying to do the right thing for both your son and yourself. I also think psychomom is right about your family and friends. They will hate to see you in pain and want you to be around as long as possible. I am really pleased that you are trying to live healthily and look after your health to the best of your ability.

However please don't give up on there never being a new and effective treatment for your genetic condition and rule out ever taking medication. God can use doctors to help people. Medicine is continually advancing. I don't know anything about OI. However I wanted to share something in regards to another genetic condition I am more familiar with Beckers Muscular Dystrophy which is similar to but less severe than Duchene Muscular Dystrophy (DMD). In Europe now there is the first licenced drug treatment for DMD Ataluren (Translarna™). In Duchene Muscular Dystrophy there is a problem with the Dystrophin gene meaning that dystrophin is not made or not made properly. If there is a premature stop codon caused by a point mutation Ataluren makes the body ignore the stop codon and make a more normal copy of the dystrophin protein. This drug is also suitable for certain types of Cystic Fibrosis. It is so new NICE in the UK have not approved it yet. Also my interest is that it may be suitable for certain types of indivuals with Beckers Muscular Dystrophy which my husband has. The reason I am mentioning this is that I strongly believe there is going to be a proliferation of treatments for genetic conditions.

Thank you so much.
I understand where my family and friends are coming from. I really do. I won't give up. I'll continue to keep up with new info and meds but for the time being there is nothing that can help me. Maybe someday soon. But bit now.
Thank you

 

[Crustyone]

I don't know if alternative treatments will work for a genetic bone problem, but since medical treatments are supposed to work, I will give you some of the supplements that will help with bone depletion and breakage. The first, in no particular order is magnesium(helps calcium bind to bones) 1000 mg., Vit. D3 5,000 IU, Silicon(not silicone and makes bones more pliable), Boron(thickens bone), L-Lysine(helps "glue" bones together). There are others that I read of, but don't really know what they do. They are copper, manganese,Orthosilic acid,Strontium and chelated zinc. If you want to try any of these I don't know of any ill affects from any of them if taken in amounts that come in the manufactured dosages. Maybe there is something in these that God has meant specifically for you.
There are a lot of nutrients that we no longer get from standard grocery products because our soil is 85% depleted. Most of the nutrients that plants used to get from the soil and then transferred to our bodies are no longer there. Magnesium and boron are two of them along with most other minerals. If you are eating organic, you are probably good to go on these minerals, otherwise you may be needing them.
I don't know what the genetic disorder does, but maybe it makes it difficult for the bones to absorb these minerals and an increase in them may allow the bones to take in a sufficient amount of what they are now missing. Just a thought. I can't imagine dealing with 300 broken bones. Two I have had were terribly painful. I really pray that you can find the help you need, either earthly or miraculously.

 

[passing_through]

Imprint on your child what a loving and tender mother you are and make a video for your child.

We'll all be around the banqueting table soon. hugs

 

[zeroturbulence]

Don't take this the wrong way and I totally understand why you don't want to take any medications, but I can't help but wonder where is your son's father in all of this?

 

[Pres19]

Don't take this the wrong way and I totally understand why you don't want to take any medications, but I can't help but wonder where is your son's father in all of this?

It's okay, we aren't together anymore. Two years together and a lot of mistakes pushed us apart plus we just shouldn't have been together in the first place. We weren't married and our relationship started off because of one night lust. He is still apart of Eli's life. He wasn't really there at first but he is finally starting to grow up and be there.