- Jul 21, 2021
- 50
- 51
- 53
- Country
- United States
- Faith
- Lutheran
- Marital Status
- Married
Greetings everyone! My name is Anne, I'm 50, a wife and mom of 3 young adults. Unless I'm missing something (new here), this forum doesn't seem to be very active, so I'm really hoping I can get something started here that will help edify others and give and receive encouragement, prayers and support among each other. Regardless of what our individual health challenges are, having chronic illness just in general is a tough, exhausting and often demoralizing road to travel, and I know anyone here can relate.
Since 2011 I've had Mixed Connective Tissue Disease, formerly mostly featuring Rheumatoid Arthritis, but that's been stable for a few years, and now for the first time most recently it's looking like Lupus is taking on the "starring role" - I'm on a steep learning curve about this disease.
I've been referred to a new rheumatologist who specializes in this that I have an appt with in August. Praying it's a "good" appointment - anyone at all who's dealt with autoimmune issues of any sort can probably relate to having a really mixed bag with rheumatologist visits. It's hard to explain unless you've been through it yourself and I don't think I'm alone in this.
Starting in January of this year I started feeling very ill with issues that didn't at all seem related to autoimmune "stuff." Long long story short, after 6 months of medical testing and multiple doctors, I was very recently diagnosed with a neuromuscular disease called Myasthenia Gravis - I'd never heard of it, didn't even know how to pronounce it, lol. Another steep learning curve!
It's basically a disorder that affects your nerves and muscles, to where your muscles weaken significantly with activity and improve with rest. So, my mornings are fine but I rapidly get weaker as the day goes on.
Additionally, I developed chronic respiratory failure in January (basically my oxygen goes down any time I stand up and start moving), not Covid (multiple negative tests) and months of testing has (frustratingly) not revealed a cause. I'm on 24 hour supplemental oxygen at this point, and in August I have an appt with the head of the pulmonary clinic in the amazing medical center in my city. I'm praying so hard he will help me figure this out!
Since January 2021 my body has been falling apart - just one health blow after another, to the point where I'm 99 percent homebound at this point. As a mother and wife (even though my kids are 18 and up now, my 21yo lives at home with us due to his special needs/autism but goes to a day program he loves) I've been feeling massive guilt and like a failure. I've been a homemaker for many, many years and now I'm totally helpless and to the point where I can't do anything at all except rest, rest, rest.
Here's the upside! It's becoming clear as day to me that the Lord is using this season of affliction (for lack of a better term) to bring me closer to him, to strengthen my faith. I've found myself spending my days reading my Bible, doing Bible studies and devotionals, and reading inspiring Christian books. Not because I'm some "goody goody" Christian - far from it lol - it's just I've become 100 percent dependent on these things to "keep me going," and that cannot be coincidental in my mind.
I'm so blessed to have a wonderfully supportive husband and kids. I pray daily not for healing ("thy will be done") but for strength to get through this all. Sometimes in my prayers I cry, rant, and feel really sorry for myself, but at the same time I thank God every day for my family.
Well, geez this got really really LONG, lol, sorry! I've been searching for months for a Christ-centered online support forum for those struggling with chronic illness, and the only one I found (Rest Ministries) has been totally inactive for years now (I was so excited to find it only to be crushed to see that their last post/activity was years ago, and no explanation given for the abrupt end).
So here I am, really hoping to connect with other Christians who deal with the unique daily challenges of living with chronic illness - any kind, not just my specific ones of course! - to support, pray for and encourage one another in our journeys.
I hope I'm not talking into the void, seeing that this forum is not active that I can tell - but maybe, just maybe, my post will bring some of us together. I pray it does. God bless anyone reading this.
Since 2011 I've had Mixed Connective Tissue Disease, formerly mostly featuring Rheumatoid Arthritis, but that's been stable for a few years, and now for the first time most recently it's looking like Lupus is taking on the "starring role" - I'm on a steep learning curve about this disease.
I've been referred to a new rheumatologist who specializes in this that I have an appt with in August. Praying it's a "good" appointment - anyone at all who's dealt with autoimmune issues of any sort can probably relate to having a really mixed bag with rheumatologist visits. It's hard to explain unless you've been through it yourself and I don't think I'm alone in this.
Starting in January of this year I started feeling very ill with issues that didn't at all seem related to autoimmune "stuff." Long long story short, after 6 months of medical testing and multiple doctors, I was very recently diagnosed with a neuromuscular disease called Myasthenia Gravis - I'd never heard of it, didn't even know how to pronounce it, lol. Another steep learning curve!
It's basically a disorder that affects your nerves and muscles, to where your muscles weaken significantly with activity and improve with rest. So, my mornings are fine but I rapidly get weaker as the day goes on.
Additionally, I developed chronic respiratory failure in January (basically my oxygen goes down any time I stand up and start moving), not Covid (multiple negative tests) and months of testing has (frustratingly) not revealed a cause. I'm on 24 hour supplemental oxygen at this point, and in August I have an appt with the head of the pulmonary clinic in the amazing medical center in my city. I'm praying so hard he will help me figure this out!
Since January 2021 my body has been falling apart - just one health blow after another, to the point where I'm 99 percent homebound at this point. As a mother and wife (even though my kids are 18 and up now, my 21yo lives at home with us due to his special needs/autism but goes to a day program he loves) I've been feeling massive guilt and like a failure. I've been a homemaker for many, many years and now I'm totally helpless and to the point where I can't do anything at all except rest, rest, rest.
Here's the upside! It's becoming clear as day to me that the Lord is using this season of affliction (for lack of a better term) to bring me closer to him, to strengthen my faith. I've found myself spending my days reading my Bible, doing Bible studies and devotionals, and reading inspiring Christian books. Not because I'm some "goody goody" Christian - far from it lol - it's just I've become 100 percent dependent on these things to "keep me going," and that cannot be coincidental in my mind.
I'm so blessed to have a wonderfully supportive husband and kids. I pray daily not for healing ("thy will be done") but for strength to get through this all. Sometimes in my prayers I cry, rant, and feel really sorry for myself, but at the same time I thank God every day for my family.
Well, geez this got really really LONG, lol, sorry! I've been searching for months for a Christ-centered online support forum for those struggling with chronic illness, and the only one I found (Rest Ministries) has been totally inactive for years now (I was so excited to find it only to be crushed to see that their last post/activity was years ago, and no explanation given for the abrupt end).
So here I am, really hoping to connect with other Christians who deal with the unique daily challenges of living with chronic illness - any kind, not just my specific ones of course! - to support, pray for and encourage one another in our journeys.
I hope I'm not talking into the void, seeing that this forum is not active that I can tell - but maybe, just maybe, my post will bring some of us together. I pray it does. God bless anyone reading this.
