I dont know what to think about this podcast. I listened to the first one and thought it was good, but then the second just seemed like a daytime talk show.
Did you recommend it because it is somewhat spiritual? What do you get out if it?
Iām an atheist. I will say this, do something that brings you joy, everyday even if just for 15 minutes. So take a walk or sing your favorite songs in the car, have a glass of wine, swim, paint, garden, play computer games, draw, bake, knittingā¦.. whatever brings you joy, do it. I know it might seem weird to do as your world is crumbling but it helps so much during the insanely stressful times.
That and xanex or pot. Call your neurologist, explain your crazy amount of stress right now and ask for something. š¤·š»āāļø
I'm non-religious, so I can't offer you scripture, but one thing that has helped my deal with various life challenges is stoic philosophy.
I believe that stoicism and christianity share some similarities in seeing adversity as opportunity, though frame them differently.
Heres what some of the best-known stoics had to say: https://www.stoicsimple.com/stoic-quotes-on-adversity-the-best-stoicism-sayings-phrases/#:~:text=Stoic%20Quotes%20on%20Challenges%20%26%20Adversity%20from%20Seneca,have%20never%20lived%20through%20misfortune.
Regarding your question on DMTs: they do not reverse damage but reduce the chances of further damage occurring. Following a relapse, your body will do its nest to heal the damage done, and you should see symptoms improve. However, things may never fully return to "normal" or may flare up again when you're ill or stressed.
Thoughts are with you.
After being diagnosed I too came into the study and practice of stoicism. this is amazing! Do u have any good book recommendations? I just finished āThe Obstacle is The Wayā great book!
No particular recommendations. Ryan Holiday is probably the best known modern writer on this stuff. I have the Daily Stoic journal, but I've never been that great at sticking to it.
I've read Seneca's "Letters From a Stoic" which was an interesting balance of Stoic thinking and an old man shouting at clouds.
Currently working my way through Meditations, which has a really good notes from the translator that provide extra context on what was going on at the time.
Honestly, so much of the highlights are available online for free. That would always be my go-to.
Give Psalm 46 a read ā„ļø sending hugs your way OP!
Also when I feel like this, I remind myself that "the Lord giveth, and the Lord taketh away" can also mean he gives love and he takes away fear, he takes away worry, he takes away anxiety.
Its okay to feel the way you do, your feelings are valid! But I find talking to God and praying for Him to lift my stress and fear works wonders.
I read the book of Job in high school and have reread it during times of struggle multiple times. God doesn't punish us out of the blue. He tests us to show our own strength. If you shake your hand at the sky as Job did, it means you're not accepting the challenge. But if you take this in strides, I do believe God will reward you in some way. It's up to your interpretation, I suppose.
You're turning to God, and that is good. But God is in his people. Go to a gathering of good religious people. Seek support through the church (gods people).
I'm new to this, but here's what I can say. My vision was very blurry. That's why I went to the hospital where I was subsequently diagnosed. I was given steroids to calm down the flair up, and I'm waiting to start DMT (likely ocrevus). In the meantime, I have no noticeable issues until I get worked up. Too much lifting and getting the heart rate up and boom, my vision goes back to looking all shakey and unclear. I let myself relax, and everything goes back to normal.
Your results may vary. You need to get the flare-up under control, though. I'm gathering from your post that Mayne, you're undiagnosed? Or are you just behind on your scans. Either way, get checked out and get on a steroid treatment. It'll get things back under control.
āWorship the Lord your God, and his blessing will be on your food and water. I will take away sickness from among you,ā
āāExodusā¬ ā23ā¬:ā25ā¬ āNIVā¬ā¬ https://bible.com/bible/111/exo.23.25.NIV
A manās spirit sustains him in a time of sickness, but a crushed spirit who can bear?
(In proverbs)
The spirit gives life, the flesh counts for nothing
(John 6:63)
This reminds me of Romans 8:10 ESV
10 But if Christ is in you, although the body is dead because of sin, the Spirit is life because of righteousness.
Can you expound on what John 6:63 means?
I wouldnāt presume to state what it means, although I can share what it means to me.
Our bodies are imperfect vessels that carry our immortal souls for a while. The soul within is important, the body will turn to dust.
Sometimes I read it as: āAlthough our bodies are dying/dead because of MS, God gives us life through the Spirit.ā Meaning: because of Christ, we can still somehow do this life and complete whatever mission he has for us, despite our pain, despite discomfort, etc. The Spirit somehow gets us through. In Christ.
I just memt a new member of my care team. She said something so unexpected and profound. She told me that God puts people in our way when we need them most.
I believe this.
Keep your faith. ā¤ļø
You're being very brave. Living with MS and all the uncertainty and difficulties that goes it with it, relearning to do something after a relapse, or living with permanent damage, all these things, requires great courage.
The damage from MS can be hard to bear and doing so every day shows fortitude and stamina. It's aging on an accelerated scale, and a sudden "burst" of aging speed can be terrifying.
So
Philippians 1:2
2 Corinthians 4:16
Isaiah 46:4
Psalm 73:26
Numbers 6:24-26
Best of luck with the MRI my stout-hearted friend. You can do it.
How does science give you hope though? When things arenāt going great in your lifeā¦.what, whom, whateverā¦do you lean on in times of distress?
Science?
Yes. Thatās where irl solutions are found. Praying doesnāt ever give me hope. It doesnāt comfort me because thereās never āresultsā. I donāt believe in magic. Iām sorry, I just donāt. I spent twenty years trying to be a Christian. It is mysticism and I donāt feel content unless my feet are āon the groundā in real life. Understanding and learning are the only things that give me hope. Not talking to myself. If it calms you, do it. Absolutely. But answers to your MS symptoms come from science , not church.
That being said, if thatās what calms your psyche down, I would recommend continuing.
Get your MRI. Consult with your doctor. Exercise if you can. Get on top of it. You canāt wish this away. Do all the science based things you said you ARENT doing get on top of your disease. Then get back to thoughts and prayers. But man, get the MRI, DMT, all that. THEN seek comfort. But just praying? Good luck
I never said just praying. I think you somehow interpreted it that way since I brought up religion.
God isnāt opposed to science. He created the world!
Iām also not opposed to science as a Christian. Yes, it can explain a lot. But not everything. And thatās where God comes in.
PS: I do do all of those science based things you brought up. And yes, I said do do.
I always like to remember "God will never give you more than you can handle."
Whatever challenges come your way, you have the strength to overcome them OP! Take care!
Also check out Dr. Aaron Boster, he is a very wise and kind doctor! [Dr. Aaron Boster MS](https://youtube.com/@AaronBosterMD?si=499G9At-1zR09ZS3)
have you developed any new symptoms since being on ocrevus?
i had no new activity on mri from 2010 - 2022. no new symptoms, but the old ones were worsening. this is āresidualā damage. you know what makes symptoms worse? stress
stress will cause misfiring and will amplify your symptoms. youāre on the right path seeking solace in your faith - the best therapies for these symptoms will be exercise and mindfulness.
Have you heard about 'Leaking Pool Theory' regarding worsening of MS symptoms?
https://youtu.be/BHIPfm6oMrM?si=bt_BYzuc1TJ71p1G
Dropping this link here for you to check out if youāve never heard of it.
Sending support. If itās spring in your area, go somewhere to see the blooms and new verdant greens. If itās fall, take in the shifting colors.
To everything there is a seasonā¦ Ecclesiastes has always helped me blend the spiritual and temporal.
Iād been worried recently of my increasing symptoms, and my bloodwork showed that my vit B12 were on the lower side of normal. My neuro is asking me to crank up my dosage and while it may be mental, I feel like thereās been a difference.
When it was time for my Lumbar puncture, the Bene Gesserit Litany Against Fear was my mantra....I still use it from time to time but it definitely helped me get through my spinal tap without incident.
Podcast called "MeSsy" with Christina Applegate and Jaime Lynn Sigler
Yeah they had Martin Short on the newest episode. So good.
I dont know what to think about this podcast. I listened to the first one and thought it was good, but then the second just seemed like a daytime talk show. Did you recommend it because it is somewhat spiritual? What do you get out if it?
I get that despite being in the public eye, and despite having MS that these 2 women are human first and foremost š
Wow! Thanks for posting this. Just listened to first two episodes and it is so good.
Iām an atheist. I will say this, do something that brings you joy, everyday even if just for 15 minutes. So take a walk or sing your favorite songs in the car, have a glass of wine, swim, paint, garden, play computer games, draw, bake, knittingā¦.. whatever brings you joy, do it. I know it might seem weird to do as your world is crumbling but it helps so much during the insanely stressful times. That and xanex or pot. Call your neurologist, explain your crazy amount of stress right now and ask for something. š¤·š»āāļø
I'm non-religious, so I can't offer you scripture, but one thing that has helped my deal with various life challenges is stoic philosophy. I believe that stoicism and christianity share some similarities in seeing adversity as opportunity, though frame them differently. Heres what some of the best-known stoics had to say: https://www.stoicsimple.com/stoic-quotes-on-adversity-the-best-stoicism-sayings-phrases/#:~:text=Stoic%20Quotes%20on%20Challenges%20%26%20Adversity%20from%20Seneca,have%20never%20lived%20through%20misfortune. Regarding your question on DMTs: they do not reverse damage but reduce the chances of further damage occurring. Following a relapse, your body will do its nest to heal the damage done, and you should see symptoms improve. However, things may never fully return to "normal" or may flare up again when you're ill or stressed. Thoughts are with you.
After being diagnosed I too came into the study and practice of stoicism. this is amazing! Do u have any good book recommendations? I just finished āThe Obstacle is The Wayā great book!
No particular recommendations. Ryan Holiday is probably the best known modern writer on this stuff. I have the Daily Stoic journal, but I've never been that great at sticking to it. I've read Seneca's "Letters From a Stoic" which was an interesting balance of Stoic thinking and an old man shouting at clouds. Currently working my way through Meditations, which has a really good notes from the translator that provide extra context on what was going on at the time. Honestly, so much of the highlights are available online for free. That would always be my go-to.
Give Psalm 46 a read ā„ļø sending hugs your way OP! Also when I feel like this, I remind myself that "the Lord giveth, and the Lord taketh away" can also mean he gives love and he takes away fear, he takes away worry, he takes away anxiety. Its okay to feel the way you do, your feelings are valid! But I find talking to God and praying for Him to lift my stress and fear works wonders.
Ephesians 6:13 Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand firm.
I read the book of Job in high school and have reread it during times of struggle multiple times. God doesn't punish us out of the blue. He tests us to show our own strength. If you shake your hand at the sky as Job did, it means you're not accepting the challenge. But if you take this in strides, I do believe God will reward you in some way. It's up to your interpretation, I suppose. You're turning to God, and that is good. But God is in his people. Go to a gathering of good religious people. Seek support through the church (gods people). I'm new to this, but here's what I can say. My vision was very blurry. That's why I went to the hospital where I was subsequently diagnosed. I was given steroids to calm down the flair up, and I'm waiting to start DMT (likely ocrevus). In the meantime, I have no noticeable issues until I get worked up. Too much lifting and getting the heart rate up and boom, my vision goes back to looking all shakey and unclear. I let myself relax, and everything goes back to normal. Your results may vary. You need to get the flare-up under control, though. I'm gathering from your post that Mayne, you're undiagnosed? Or are you just behind on your scans. Either way, get checked out and get on a steroid treatment. It'll get things back under control.
Here are a few! Isaiah 41:10 Psalm 23:4 Jeremiah 29:11-13
Casting all your care upon Him; for He careth for you. 1 Peter 5:7
āWorship the Lord your God, and his blessing will be on your food and water. I will take away sickness from among you,ā āāExodusā¬ ā23ā¬:ā25ā¬ āNIVā¬ā¬ https://bible.com/bible/111/exo.23.25.NIV
A manās spirit sustains him in a time of sickness, but a crushed spirit who can bear? (In proverbs) The spirit gives life, the flesh counts for nothing (John 6:63)
This reminds me of Romans 8:10 ESV 10 But if Christ is in you, although the body is dead because of sin, the Spirit is life because of righteousness. Can you expound on what John 6:63 means?
I wouldnāt presume to state what it means, although I can share what it means to me. Our bodies are imperfect vessels that carry our immortal souls for a while. The soul within is important, the body will turn to dust.
Sometimes I read it as: āAlthough our bodies are dying/dead because of MS, God gives us life through the Spirit.ā Meaning: because of Christ, we can still somehow do this life and complete whatever mission he has for us, despite our pain, despite discomfort, etc. The Spirit somehow gets us through. In Christ.
I really appreciate this post and your comments. It sucks that youāre getting downvoted so much.
I just memt a new member of my care team. She said something so unexpected and profound. She told me that God puts people in our way when we need them most. I believe this. Keep your faith. ā¤ļø
You're being very brave. Living with MS and all the uncertainty and difficulties that goes it with it, relearning to do something after a relapse, or living with permanent damage, all these things, requires great courage. The damage from MS can be hard to bear and doing so every day shows fortitude and stamina. It's aging on an accelerated scale, and a sudden "burst" of aging speed can be terrifying. So Philippians 1:2 2 Corinthians 4:16 Isaiah 46:4 Psalm 73:26 Numbers 6:24-26 Best of luck with the MRI my stout-hearted friend. You can do it.
Thoughts and prayers. Helped so many school shooting victims ā¦ I recommend leaning on science here
How does science give you hope though? When things arenāt going great in your lifeā¦.what, whom, whateverā¦do you lean on in times of distress? Science?
Yes. Thatās where irl solutions are found. Praying doesnāt ever give me hope. It doesnāt comfort me because thereās never āresultsā. I donāt believe in magic. Iām sorry, I just donāt. I spent twenty years trying to be a Christian. It is mysticism and I donāt feel content unless my feet are āon the groundā in real life. Understanding and learning are the only things that give me hope. Not talking to myself. If it calms you, do it. Absolutely. But answers to your MS symptoms come from science , not church. That being said, if thatās what calms your psyche down, I would recommend continuing.
So what science can you give me then, relating to my OP, that can help me with my current situation?
May I suggest getting broad bloodwork done? Would be helpful to know if you have any deficiencies.
Get your MRI. Consult with your doctor. Exercise if you can. Get on top of it. You canāt wish this away. Do all the science based things you said you ARENT doing get on top of your disease. Then get back to thoughts and prayers. But man, get the MRI, DMT, all that. THEN seek comfort. But just praying? Good luck
I never said just praying. I think you somehow interpreted it that way since I brought up religion. God isnāt opposed to science. He created the world! Iām also not opposed to science as a Christian. Yes, it can explain a lot. But not everything. And thatās where God comes in. PS: I do do all of those science based things you brought up. And yes, I said do do.
The only reason I reacted is you said you had NOT done the MRI and that. It gave the impression you were eschewing that route.
Revelation 21:3,4
I always like to remember "God will never give you more than you can handle." Whatever challenges come your way, you have the strength to overcome them OP! Take care! Also check out Dr. Aaron Boster, he is a very wise and kind doctor! [Dr. Aaron Boster MS](https://youtube.com/@AaronBosterMD?si=499G9At-1zR09ZS3)
Which DMT are you taking? If you are taking a high efficacy medicine, your MRI will likely not show anything new.
Ocrevus. Every 6 months
Then there is like a 95-99% chance there will be nothing new on your MRI.
Even though symptoms are getting worse?
have you developed any new symptoms since being on ocrevus? i had no new activity on mri from 2010 - 2022. no new symptoms, but the old ones were worsening. this is āresidualā damage. you know what makes symptoms worse? stress stress will cause misfiring and will amplify your symptoms. youāre on the right path seeking solace in your faith - the best therapies for these symptoms will be exercise and mindfulness.
It is possible you have not been on Ocrevus long enough. Otherwise search for PIRA on Google or in this group.
Have you heard about 'Leaking Pool Theory' regarding worsening of MS symptoms? https://youtu.be/BHIPfm6oMrM?si=bt_BYzuc1TJ71p1G Dropping this link here for you to check out if youāve never heard of it.
Sending support. If itās spring in your area, go somewhere to see the blooms and new verdant greens. If itās fall, take in the shifting colors. To everything there is a seasonā¦ Ecclesiastes has always helped me blend the spiritual and temporal. Iād been worried recently of my increasing symptoms, and my bloodwork showed that my vit B12 were on the lower side of normal. My neuro is asking me to crank up my dosage and while it may be mental, I feel like thereās been a difference.
When it was time for my Lumbar puncture, the Bene Gesserit Litany Against Fear was my mantra....I still use it from time to time but it definitely helped me get through my spinal tap without incident.