Homeschooling while bedridden with chronic horrible back pain, anyone else?

[Mosaicmind]

I'm wondering how many others, like me, are out there homeschooling while pretty much bedridden and in chronic bad pain? I've had back problems almost my whole life and have been diagnosed with several spinal/vertebra diseases. Two years ago on January 21st my back gave out, my knees buckled, and my pain shot thru the roof. The diagnosis wasn't a surprise because I had been on narcotic pain meds and only controlling the pain because I didn't want another surgery. I was rushed to ER and then saw a spine surgeon to find out that I have SI Joint Dysfunction. The MRI showed my joints very messed up and needing surgery. This diagnosis is the 3rd worse disease for pain and quality of life behind ALS and Parkinson's disease.

 

Now, I'm over 2 years out from that day and I'm unable to walk or sit up so I remain in bed 24/7 365. I'm still homeschooling but I have to admit there are days like today where I've been awake since last night at 10pm. The pain gets so bad I can't sleep despite pain and sleep meds. I feel guilty for not being able to do a better job of schooling my boys.

 

I have zero friends here so the only adults I talk to are my hubby, 20 yr old dd, and 23 yr old ds. I just found out yesterday that my surgery appeal has been denied for the 9th time. I'm a mess today and very depressed. I wish I had someone to talk to who knows what I'm going thru or even a friend who will listen to me whine every so often. Oh, the reason for the surgery denial is because insurance deems SI Joint fusion surgery investigational/experimental when done for pain and mechanical reasons. It's just carp!!

 

Anyone else out there homeschooling thru chronic illness and pain?

[happi duck]

(Hugs)

[TravelingChris]

We have a social group here- homeschooling with a chronic illness- that I welcome you to join.  Go up to the top of the forums  choice screen and click on social groups.

 

If your insurance is denying surgery, what are they suggesting to get you more mobile and able to live life?  If you can't walk, have you considered using a wheelchair or scooter?  Mobility is just so important to having a better life. 

 

Have you gone to a pain clinic?  They have all sorts of procedures including pain pumps to help control pain.  If you haven't gone, I would urge you to go to one.  Your life seems miserable and not sleeping well just makes the pain worse.  The pain clinic I went to had a multifaceted approach with PT, medications, procedures if needed, and psychological help for dealing with pain. Hopefully there is something like that in your area.

[fraidycat]

:grouphug: :grouphug: :grouphug:

 

I've got no advice, but I wanted to give you a hug and let you know how incredibly angry I am on your behalf. Our medical/insurance system is a joke. Except it's so not funny. Farce is probably a better word. Absurd buffoonery.

Edited February 24, 2016 by fraidycat

[Mosaicmind]

We have a social group here- homeschooling with a chronic illness- that I welcome you to join. Go up to the top of the forums choice screen and click on social groups.

 

If your insurance is denying surgery, what are they suggesting to get you more mobile and able to live life? If you can't walk, have you considered using a wheelchair or scooter? Mobility is just so important to having a better life.

 

Have you gone to a pain clinic? They have all sorts of procedures including pain pumps to help control pain. If you haven't gone, I would urge you to go to one. Your life seems miserable and not sleeping well just makes the pain worse. The pain clinic I went to had a multifaceted approach with PT, medications, procedures if needed, and psychological help for dealing with pain. Hopefully there is something like that in your area.

I've been using a wheelchair since Jan. 21,2014, I use it even in my home so I don't walk at all. Insurance gives no suggestions because that isn't their job. They haven't given me any alternate surgeries or other things that might help because there is none!

 

I've been going to a pain clinic since 2007, before my first surgery. I can't do PT because it will cause more damage than help, PRP doesn't help with bone spurs, rebuilding bone, injections last less than 24 hours, and I'm on 2 different narcotic pain meds and have been on various ones since 2007. I've been in counseling for years and I have a counseling degree myself.

[TravelingChris]

I am so sorry about how bad your insurance is.  I don't have any other suggestions but I am glad you are using a wheelchair to help you though I know that must be tough.  Once again, I urge you to join our homeschooling with chronic illness group since we listen to whines and complaints all the time.

[mamiof5]

Hugs and prayers your way!!! Unfortunately I have no suggestions, but I just wanted to let you know I am so sorry you are in so much pain and your surgery was denied. Insurance is such a rip off, and all they care is about money, not the health of their members :(

[TravelingChris]

The social group is actually called Chronic Illness Moms.

[Guest]

I don't have the kind of chronic pain you have...not as debilitating.  But I have some, and it is back pain.  I don't know how much help I can be to you, but I do feel for you.  

 

Last spring, when I was at my worst (so, like a year ago), I could barely get out of my chair.  However, I found something I *could* do from my chair that made me so happy, that contributed to a good cause, and sort of redeemed the situation for me.  It's a long story, and maybe I'll tell it later, but my point right now is that you are not measured in worth or value by what you can do...you are valuable and lovable and worth a LOT just because you ARE.  And your current disability might be the path you have to finding that out.  If you can get help, get it.  But if you can't, then maybe there is something else of value to be found here.  There was for me.  

 

(((MM)))   I'm not unacquainted with your over-time story, and I respect you very much.  You are most certainly an overcomer.