I need thought I would do this, but there was a question raised in the comment section regarding the baclofen pump. This comment wasn’t meant to harm, but it hurt. For me, there is no alternative. Taking the baclofen orally was not working for me. I had no quality of life. I was existing. As for the access and availability in poorer countries I can’t speak of. Which brings me to something more pressing. I can’t speak to equity of most anything in the developed world versus the developing world. Does it anger me? Yes. Does it sadden me? Yes. I’m realizing that I can’t internalize the struggles of the world of which I have no control. I do my best each day to make the most of my blessings that is pleasing to God. The most difficult questions to answer are above my pay grade. When I share my experiences, I do so in hope. That you have hope. And that you fight a battle that is not mine. I’ve harbored too much guilt trying to reconcile why some have access while others do not. I’ve fought that battle. It got me nowhere, but to a therapist’s chair. I’ve asked why of God regarding my condition that will not leave me. I believe in God, but Cerebral Palsy is not leaving me. It’s acceptance. It is what it is. In an ideal world, disabled people wouldn’t feel compelled to always explain something that has no explanation or one I want. I would apologize for this post, but for once I’m not. Explanation done. I hope this ends this conversation. Blessings my friends.
People need to do what works for them and the rest of us need to respect that. I find so many folks so ready to judge others and they have no idea what they are going through. It's all about them.
ReplyDeleteI love it that you share what's going on in your life.
Have a blessed day and weekend, Regine. ♥
Excellent!
ReplyDeleteStay strong we support you.
ReplyDeleteWhy does the world, social media in particular, feel the need and that they have the right to criticize others? The anonymity of it?
ReplyDeleteI'm sorry you had to write this post and I apologize for whatever was said. I enjoy reading your words every day and being encouraged by your courage.
Praying for you and your day.
Blessings,
Betsy
I appreciate your truth. I think of you in a prayerful way every day. I have said before, your courage inspires. Delete and ignore naysayers. Hugs.
ReplyDeleteYou are so brave, Regine! It's not your faulty, or my fault that many people in other countries have no access to comparable medicine. We have to accept this, and be thankful for the good treatment. Don't get wound up by critics! Hugs, Valerie
ReplyDeleteAll you can do is do your best. The guilt is hard to deal with you, but you have to take care of yourself and it sounds like that's what you're doing. Praying for you.
ReplyDeletewww.rdsobsessions.com
If it was my comment which hurt I am so very sorry. It certainly wasn't my intention. I apologise profusely.
ReplyDeleteIt wasn’t you
DeleteIt wasn’t you
DeleteDo not feel you have to apologise or feel guilty for whatever medical treatment you are receiving
ReplyDeleteCarol x
Que a força, a Paz, A saúde, o amor, nunca saiam do seu coração.
ReplyDelete.
Feliz fim de semana.
.
Pensamentos e Devaneios Poéticos
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Dearest Regine,
ReplyDeleteYou alone can judge the miserable feeling you lived through when taking the baclofen orally! For the very reason I've declined for years a treatment that made me want to die rather than live like that. It is our personal right to do so.
No, we cannot change the outcome for lack on medical treatment for millions in this world but if it only sparks just a tiny bit of gratitude for living here and now. Our ancestors didn't have the treatment offered now...
Knowing that we never are walking the road we have to walk alone; however difficult and painful at times. There have been and are others that walk it as well.
With God's support and our Hope, we will manage!
Hugs,
Mariette
You have the privilege to use medical advances to help life be better. If only the world could too, but for now that is not in the cards. Every person born soon needs some type of medical help in so many forms, and each person should never be criticized for use. I am learning of your life and I find you brave and very grateful to God the Father. We should all be so, world wide. I add you to my nightly prayers for ones who need most support. Lynn XX
ReplyDeleteIt is your decision to make regarding what works best for you! I send along my continued thoughts and prayers of encouragement! Love your writing, though I seldom comment! Your words are a blessing! Special hugs to you!
ReplyDelete...much if life concerns me, but too often there is little that I can be to change things!
ReplyDeleteI am so sorry that you have to deal with comments like this. You are doing the best you can my friend and I appreciate all you share. You are changing hearts and that is beautiful.
ReplyDeletehttps://www.kathrineeldridge.com
You are an inspiration with your posts and words every day. I'm really glad that you can get what you need to be comfortable. At times it can be unpleasant but you have a very strong and healthy vision that you share with others who visit here. Then there is God who watches over each and every one of us. Strong faith for a strong woman is a blessing and you are blessed. I, for one, truly enjoy your words of inspiration. The best always to you and I hope you have a wonderful weekend.
ReplyDeleteYou are so inspiring. I love your voice. All the best to your writing. Stay well, stay safe, stay you!
ReplyDeleteDang, I hope it wasn't mine, I thought I was being very supportive. Please take care and ignore comments that shouldn't be there.
ReplyDeleteYou are so right ~ We can not save the world ~ we can only take care of ourself and then hope the best for others ~ In order to anything for anyone else we need to take care of our Self first and that is not selfish ~ You are a treasure ~ sending lots of distant reiki healing energy hugs to you ~ Xo
ReplyDeleteLiving in the moment,
A ShutterBug Explores,
aka (A Creative Harbor)
I'm sorry that someone made a comment that hurt you. It is a blessing to be able to receive the medical treatments that are needed; it is something to be grateful for, but, not something to feel guilty about. May you be blessed with all the health care you need and with good health.
ReplyDeleteIt is so hard to be the type that takes on the world's problems/be a people pleaser/try not to offend. Ultimately, we have to do the best that we can to see that we get the best care for ourselves. People will not always agree with us or will make remarks. But, God is our defender and Judge. He is the ONLY one we are accountable to! Praying you are feeling better soon and the pump helps you. Here is a link to one of my posts that might provide a little encouragement: https://encounterswiththedavisfamily.blogspot.com/2021/11/why-me.html
ReplyDeleteSome people don't try to understand others or they are blunt. Blogging is a weird thing, because we assume people will understand, but they don't always. I enjoyed reading both of these truth posts, even better I read them back to back. Take care, and follow your heart. hugs-Erika
ReplyDeleteStay strong.
ReplyDeleteAdmiring you, praying for you, cheering you on, supporting you. That's what we do, that's who we are.
ReplyDeletexo
Sharing your feelings. You are a strong person.stay that way..
ReplyDeleteSo sorry that you are hurting. It is good to share your feeling so others may understand you better. Stay strong.
ReplyDeleteYou are strong and I admire your strength in sharing how you feel. Too often, we speak without realizing how it affects others and we should all realize that each one of us is fighting a battle no one knows anything about. Stay strong and enjoy each blessing you are given! There is a lot to be grateful for.
ReplyDeleteSo saddened that someone would inadvertently hurt you by his or her comment, Regine. Your explanation is beautiful and justified. Let us all continue to pray for one another because each of us has needs and issues with which we have to deal on a daily basis.
ReplyDeleteI am so sorry that you have to deal with comments like this.
ReplyDeleteStay strong, R.
Sending you lots of positive thoughts.
A dear friend of mine has a 2 year old grandson who is testing for CP. They've been told they can't clinically diagnose until he's older. Thank you for sharing your heart and your story with us. God bless you!
ReplyDeleteIt helps reading posts like this to understand what you experience. And I'm sorry you had a comment that hurt you. I suspect whomever wrote it did not intend to do so but that doesn't always help. Having heard more than my share of "Why don't you try this?..." regarding medical treatment, I understand the choices you must make to do what is best for you. But until you've been in that position, it can be difficult to wrap your head around. I applaud your willingness to bring your thoughts into the open.
ReplyDeleteAnd my take-away line from this today -- "The most difficult questions to answer are above my pay grade" -- brilliant.
You have nothing to apologize for. I think people who haven't lived with a chronic illness sometimes just cannot understand what it is like, so they end up asking questions or making comments that are hurtful. On the other hand, some people are just mean.
ReplyDeleteAs someone who is chronically ill, I do come across hurtful comments or unsolicited advice. Sometimes people don't know any better and sometimes they are being cruel on purpose, just because they can.
Everyone has to work out what's best for them and their health. You shouldn't feel bad for doing that or for having access to medical care. I am grateful that I was born into a privileged country and I know it's only by chance. I think on that and pray for others who do not have the opportunities available to us. This doesn't make it wrong to take advantage of those opportunities. Thank you for sharing. :)
ReplyDeleteStay strong.
ReplyDeleteContinued good thoughts coming to you.
All the best Jan
Some wise words from Dr. Seuss: Those that matter don't mind. Those that mind don't matter. Be well and stay strong.
ReplyDeleteYes do not take on the burden of wondering why some people are less fortunate and think of all the worlds problems it can be overwhelming. I am sorry you are struggling, I have chronic health problems so I understand. And I too have thought of things you have and indeed it can be overwhelming. I am glad you are being more open here on your blog.
ReplyDeleteAllie of
www.allienyc.com
Oh Regine - how horrible to have to explain your treatment. There are too many issues this side of eternity that we don't have answers to, but acceptance certainly brings us a measure of peace, and God gives us the rest, and the best.
ReplyDeleteStay safe
Blessings
Maxine
You are so strong and you inspire me everytime I stop by. I know sometime we hear things that upset us and only we know own own selves. I think at times many people try to help and do not realize they can not. I can pray and will do so always. God will stay with you through all of this and Jesus always walks alongside of us no matter what we are going through. I know we need to clear our minds and I hope you can have some downtime to just breathe and rest. I am so very sorry you have had so much suffering.Sometime it is good to share our sadness as well as happiness. I think you were brave choosing to tell your story. MUCH LOVE, PEACE, PRAYERS
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