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Anyone else manage a chronic disease and HS?

multiple sclerosis chronic disease lupus fibromyalgia

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#1 cholderby

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Posted 05 August 2013 - 03:53 PM

ah..."chronic disease"...it sounds so glamorous... :coolgleamA:

 

I was diagnosed with MS last March.  Things have gone pretty much straight downhill for me since.  My hands are pretty iffy nowadays, they go in and out with feeling though I still have pretty good movement.  My eyesight is getting worse too.

 

I'd love to connect with someone else who is health-challenged and homeschools.  We can't afford private school, don't live anywhere near a Catholic school, and are completely afraid of the local public schools.  I've always wanted to homeschool but, even if I didn't love it, we really don't have much of a choice.



#2 Jean in Newcastle

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Posted 05 August 2013 - 06:31 PM

Yes, there are many of us here who have chronic illness.  I've had fibro for over 25 years.  We have a social group here called "Chronic Illness Moms".  If you PM me, I will give you an invitation to the group.  It is a private group since so many of us share private details about our health.  If you want to make a more public "shout out" to moms with Chronic Illness, I would repost this thread on the Chat Board or the Education board where more people hang out.  


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#3 ThatHomeschoolDad

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Posted 24 September 2013 - 07:18 PM

I'm HSing with Stage IV cancer, which, hopefully, I can manage long term as a chronic, rather than fatal illness.   HS started 6 years ago; cancer started 4 years ago, so DD has spent her share of time in waiting rooms, etc.

 

One memorable time was several weeks after I had major abdominal surgery/chemo two years ago.  it was in late August, and I was still on pain meds as we started the year.  I still remember nodding off as DD did math, and she'd periodically say "DAD!" when she needed to check an answer.  That was interesting, but survivable.

 

Fatigue has been my symptom du jour this fall, but we still work through it.



#4 Mommyfaithe

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Posted 24 September 2013 - 08:01 PM

Yes. I am in remission right now, and doing all I can to stay there, but you never know. I have Hashimotos, fibromyalgia and a long grocery list of other autoimmune issues. Mainly, I try to be nice to me. I push myself HARD....but I also know when I need rest. We have been know to bed school. I had several years where I was bed bound but we still managed schooling. It can be done. It takes commitment and an iron will.

#5 ThatHomeschoolDad

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Posted 29 September 2013 - 10:30 AM

Bed school -- now that I haven't tried, although I probably should.   Radiation is so weird -- I'm fine most days, but then WHAM -- hit by a dump truck.  It also seems to be cumulative, so I might be fine all week and crash and burn Sundays.

 

I have done recliner school, so that's similar.



#6 Finnella

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Posted 04 December 2013 - 03:37 PM

I was already ill when I had to start homeschooling. I have fibromyalgia, along with a list of many other things. 

 

We can't afford Catholic or private school either, so it was a choice between bringing our younger son home or having him continue in a horrible situation.

 


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#7 TheRoadLessTraveled22

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Posted 25 January 2014 - 03:03 PM

Although I haven't been "labeled" chronic. I am fighting Dysautonomia, which is a dysfunction in your nervous system. It can attack all areas of your health, for me I have had Mono, Tachycardia, Fatigue, Pneumonia, Migraines, You get the point...Not fun :glare: I am not a Mom yet, I am a stay at home daughter so it is a bit different for me, but I have been finding it hard to continue with normal day to day tasks. I think a support group for long term illness would be a great idea.



#8 Jean in Newcastle

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Posted 25 January 2014 - 06:35 PM

If you send me a PM I can invite you to the Chronic Illness Moms subforum (which is not just for moms).  



#9 Sadie

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Posted 26 January 2014 - 08:52 PM

Hello. Just wanted to say one of my best friends has MS and home schools her two boys, 10 and 7.

I have a chronic lung disease or two - ABPA and bronchiectasis. I was diagnosed 7 years ago. It hasn't always been easy but we've managed to home school through multiple exacerbations and hospital stays. It's similar to cystic fibrosis in its effects but without the digestive component.

I have cataracts and pre-osteoporosis as side effects from my meds as well.

Things that help me - plenty of sleep, pain relief, good food, gentle daily exercise, anti-anxiety meds, meditation.

Specifically in regards to home school - know my health boundaries well and work within them. This means our life errs on the side of routine.

I also think it's good to have an open mind about the possibility of school. There may or may not be a time when health deteriorates to the point of school being the best decision. So I choose not to trash talk school, just in case.

You are definitely not alone!

#10 Sadie

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Posted 26 January 2014 - 08:55 PM

Oh and bed school is awesome! I bed school through pneumonia and such like. My youngest loves bed school :)

#11 Zookpr

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Posted 24 March 2014 - 06:03 PM

My "disease" is a bit different, but I am bipolar.

When I am having a bad day, we go easy or tsle a vacation day.

#12 Kerileanne99

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Posted 29 March 2014 - 12:35 AM

So glad I caught this thread. I have a very accelerated dd4 for whom we strongly believe homeschooling will be the only viable option. I guess we have actually been homeschooling for quite some time given the levels of work she is doing, but I see this as different than 'technically' homeschooling for one reason alone- there is no true pressure right now. If I am having a bad day it isn't a big deal (other than to her when she wants 'school') to bag it and curl up in bed with books and the IPad. I worry that when she is officially of school age this will change.

My (and hubby's) only concerns about homeschooling continue to center around my health. I was in a serious accident in the military and am confined to a wheelchair. I have several chronic conditions that are immune and neuromuscular in origin. I see a pain management doctor who has helped me tremendously with an internal pain pump, but there obviously good days and bad days.

I am glad to hear that there are others who have managed to make it work. Thanks for sharing your stories...

#13 Mystiekm

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Posted 29 March 2014 - 11:17 PM

I have lupus and have been dealing with bad headaches after having meningitis. Its hard enough having a cleαn house while homeschooling but throw in a chronic illness and that makes it very hard.

#14 Elizabeth in MN

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Posted 30 March 2014 - 12:04 AM

I have a laundry list of chronic diseases. Mainly it's Chronic Fatigue Syndrome followed up by Fibromyalgia.



#15 happycc

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Posted 25 September 2016 - 01:06 AM

IGA Nephropathy here

#16 Hedgehog

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Posted 20 April 2017 - 10:28 PM

I've had sarcoidosis for nearly 10years. Right now I'm in remission which is fantastic ❤️ No steroids!!

I also have patches of severe sciatic pain, in fact I'm coming to the end of a two month bout of that now. I can feel my body healing oh so slowly every day and find it hard to be patient.

When I'm sick we reduce the amount of schoolwork that gets done and the kids take over most of my chores. They are fantastic and I'm super proud of how they manage. Dh has a demanding job and a long commute but he's emotionally supportive, if not practically so.

One thing I do find is that it's hard to talk to most people about the realities of family life when a parent has a chronic illness. You can see them struggling to comprehend what it means for you on a daily basis, and how stressful and tiring it can be. It's truly wonderful when you find someone who understands and doesn't judge.
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#17 morgan

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Posted 29 April 2017 - 04:21 PM

I started homeschooling my oldest over 15 years ago and didn't give a lot of thought to homeschooling my youngest (now 10) until dad became chronically ill and now on permanent disability. He is a disabled veteran with a lot of chronic symptoms/syndromes and unexplained neuromuscular issues. I have had to go back to college and try to start up a career after a nearly 20 year stint as a stay at home mom, now dad is homeschooling (something he never dreamed of) and is ill to boot. Not the ideal situation, but our daughter wants to keep homeschooling. He will be glad to know others teach from the couch, recliner, bed, etc on bad days. 

 

We are actually trying to find some more independent options for next year, so she can work mostly on her own if necessary. I appreciate his efforts homeschooling, and I know my daughter appreciates the time she gets to spend with her dad. Overall, we are just taking it one year at a time. 

 

 



#18 Hedgehog

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Posted 30 April 2017 - 12:29 AM

He will be glad to know others teach from the couch, recliner, bed, etc on bad days.


Oh, definitely! It simply wouldn't happen otherwise! Some days I'm laid down all day, other days I start out like that and gradually get up, and on really good days I can be up all day. It varies a great deal and we just take it as it comes.


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#19 cintinative

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Posted 01 May 2017 - 07:45 PM

I have Transverse Myelitis and they are still watching me for MS development.  From the 50,000 foot view, it has not changed a lot but I do get fatigued more easily than I used to and I need a lot more sleep.  So I have had to adjust my schedule to account for those things, and the house is pretty much a mess all the time. My husband is also battling chronic disease--Sarcoidosis (inactive at the moment), possibly the return of kidney cancer and an unknown ailment that is causing pain in his mid-section. Honestly it has been challenging to navigate my own health issues while also dealing with his.  Sometimes I just white knuckle it to get stuff done and exhaust myself.  I think I might need to join that group also!





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