Anyone with a chronic illness?

[hsmom2011]

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[J9Mommy]

I'm sorry !

 

It's been hard for us too. We moved to a more isolated location and went from a house to an apartment. That alone has been L-A-M-E.

 

We have don't have any family around and hubby has odd hours. You add in the fact we have been broke a lot recently, the weather, parking issues etc...and the summer has not been that fun.

 

The reason I replied though was all 3 of my children have an autoinflammatory disorder. Right now the youngest is having more issues, and the heat seems to trigger flares. So, I feel you on that. It was just 111 out the other day. Running the air all day bothers my allergies, but opening the windows just does not seem to be working. Even with fans/windows it will be 85 in here. With his flares we have to keep it cool.

 

Do you guys have an local homeschool park groups ? Something you can do when you feel well, but it's not a "commitment."

 

I would not stress about it too much. Just do what you can, and let things fall into place. You will figure it out :)

[serendipitous journey]

Well, I have periodic horrid panic/anxiety attacks b/c of childhood abuse, which has limited what I can do in a different way. My children have a really stable life full of love, but it is definitely more home-centered than even most of our hs-ing acquaintances.

 

Remember that the chief thing for your little ones is that they are loved. If you are loving, firm, kind, consistent (as much as possible ;)) this is an enormous gift to them; and you have the very hard, though very important, work of modeling for them how a person's value is not related to the amount of Stuff They Can Do. (I have a hard time remembering that, myself)

 

:grouphug:

[hsmom2011]

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[hsmom2011]

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[PeterPan]

Well how old are your kids? I think little kids don't need much outside of the home, but as they get older they get really unhappy if they aren't connected. Btdt. When I started homeschooling years ago, I was still struggling with MCS (chemical sensitivities), so that made it hard to connect with people, as I was always having to check whether places were safe or going to make me sick. We got that much better, but over the years we realized I was also reacting to cell towers and wifi and other things. Well at this point they're pretty much everywhere. As far as how we handled that, we've done a mix of things:

 

-take advantage of other people willing to take them to the activity.

-invite other people over to your home for once a week classes or a playgroup

-invite kids over frequently

-send them to summer camps where they can make friends from a larger pool of kids.

-Give them email accounts to keep up with those friends.

-If *you* don't feel up to keeping them connected, you can help them take the initiative to make their own connections. As long as they ask permission, it's all cool. Let them be pro-active.

-Search harder to find things you *can* make happen. If the issue is you aren't up to driving, well find activities in the evening that Dad can take them to. Many sports have evening practice or lesson options.

-Take advantage of surrogates like Grandma. They can drive, take them on outings, teach them to cook or knit, etc. If you don't have a grandma figure, adopt one. ;)

 

Now on the boredom front, that's a mental thing. I have a runner friend who runs long races, including marathons, and she practices without an ipod. She said that hardest part of it is not being afraid to be alone with yourself. There was a long time where I went through the predictable emotions (bitterness, glib assumption it would change soon, blah blah). Now I've moved on to making my life. You might need to start making a list of what you want to do for *yourself*. You might need to take up some new hobbies or learn some new things. Almost anything you want can be delivered to home. There's really not enough educating to be done with littles to satisfy the intellectual abilities of a smart woman. You have to add on new hobbies. Landscape, take up sock knitting, work through a cookbook, learn to design websites and blogs, etc.

 

Knitting really flops for me, though I try. I'm much better at crochet. If you select books from the library and put them on hold, they're ready for someone else to go pick up for you. Send your kids once a week with that someone else and let them pick up all your hold books. Landscaping I only do once a year, because I always try too hard and get worn out and broken out all over in rashes. But I love thinking about it, and now my family is mature enough to keep up with the weeding for me. :D

 

Digital photography is another thing I've done. You can take classes at Clickinmoms (online) and get really good, really fast. It's a great pleasure to me. That can be a very consuming hobby if you let it, because you shoot in RAW, edit in Lightroom or Photoshop (software), then make photobooks. Actually, you can make really great photobooks in Lightroom now, or you can use Photoshop if you want to learn to digi-scrap. Honestly, there's so much for me to do AT HOME, it's a wonder anyone even has TIME to go out, lol.

 

I'm not unsympathetic to the plight. I'm just saying I've dealt with this for a long, long time, and it's a process. You won't feel the same way the whole time. You'll mature. It may help you to read spiritual books on suffering or grief. It's the loss of a dream, the vision of what you thought your life would be like, so reading books about that can help too.

 

The other really obvious thing is to take advantage of your time and RESEARCH what you think is going on. There was a point when I was really sick where I was researching HOURS every day. I joined all kinds of yahoo groups and read on boards. I think for a lot of this stuff the answer isn't really found in books. Those hours paid off, because I got connected with a practitioner in another state who WAS able to help me and make a big difference. What she did was totally different from anything most books say, and yet it worked amazingly. So it's definitely another place worth putting your time.

 

As your kids get older, you'll be increasingly able to drop them off, etc., so it gets easier to make things happen. You'll just have to see what you can do.

[MerryAtHope]

My husband was disabled from chronic Lyme disease back in the summer of 2000, and yes, it has greatly impacted and changed our lives. At times our schedules have needed to revolve completely around his needs. He has sensitivities to light, sound, motion, chemical and natural smells. There was a time I couldn't cook in the house. We have to shower immediately when we return from church and many other places because of the perfumes and other scents. People who visit us have to watch shampoo, deodorant, hair care products, lotion, cologne & perfume...it's so easy to miss something that will make him pass out, have an all-day headache, make his face swell up or his skin burn, or other such symptoms.

 

My kids have certainly had an unusual childhood in some ways...and yet normal in other ways. You wrote:

 

My kids seem happy enough, but I feel so guilty.

 

I want to encourage you that this is a false guilt. You love your children, and they are happy. This is beautiful, this is what family is about!

 

They will probably grow up with more compassion and take more notice of others and their struggles because of the subtle lessons learned growing up. That may not have been on your curriculum list...but I like to think that sometimes God's curriculum list is different from ours, and that's ok. Sure, it's fun to run around to lots of play dates and activities, and there's nothing wrong with that--but it can also teach children to be self-centered and entertainment-focused, and that's not a realistic picture of life at all.

 

Don't think of their growing up years in terms of what they don't have and what you can't do. Think of it in terms of what you have and CAN do. Relationships are precious gifts. Activities are just...activities. They are not the real stuff of life.

 

(((Hugs))) to you.

 

BTW, shot in the dark, but have you looked into Lyme Disease? My dh went undiagnosed for several years as well, and a false-negative test result led us down the wrong path until we learned how common they are. Anyway, worth looking into if you haven't already.

 

Your children are lucky to have such a caring mother. Merry :-)

[Hunter]

I have suffered with an undiagnosed illness (probably autoimmune disease of some kind) for the past few years, and it has greatly limited the number of outside activities my kids participate in. I have limited my driving, so we spend way more time at home than I would like to. I was wondering how others in this situation handle this? My kids seem happy enough, but I feel so guilty. I also feel so bored and lonely being home so much. They do get out on weekends with Dad, or we will all go out as a family, and to church. They get along well with each other and play together, but I'm concerned they need more socailization especially as they get older. This summer has been absolutely horrible with the heat, I'm hoping thigs will improve some as we move into fall.

 

I had a string of undiagnosed and incorrectly diagnosed ailments throughout my sons' childhood. I know all about the guilt.

 

This topic is so huge I don't even know were to start saying something. I'll dwell on it a bit, to see if I have anything worth contributing to the thread. For now, I just wanted to let you know you are not alone. :grouphug:

[CupOCoffee]

My husband was disabled from chronic Lyme disease back in the summer of 2000, and yes, it has greatly impacted and changed our lives. At times our schedules have needed to revolve completely around his needs. He has sensitivities to light, sound, motion, chemical and natural smells. There was a time I couldn't cook in the house. We have to shower immediately when we return from church and many other places because of the perfumes and other scents. People who visit us have to watch shampoo, deodorant, hair care products, lotion, cologne & perfume...it's so easy to miss something that will make him pass out, have an all-day headache, make his face swell up or his skin burn, or other such symptoms.

 

My kids have certainly had an unusual childhood in some ways...and yet normal in other ways. You wrote:

 

 

 

I want to encourage you that this is a false guilt. You love your children, and they are happy. This is beautiful, this is what family is about!

 

They will probably grow up with more compassion and take more notice of others and their struggles because of the subtle lessons learned growing up. That may not have been on your curriculum list...but I like to think that sometimes God's curriculum list is different from ours, and that's ok. Sure, it's fun to run around to lots of play dates and activities, and there's nothing wrong with that--but it can also teach children to be self-centered and entertainment-focused, and that's not a realistic picture of life at all.

 

Don't think of their growing up years in terms of what they don't have and what you can't do. Think of it in terms of what you have and CAN do. Relationships are precious gifts. Activities are just...activities. They are not the real stuff of life.

 

(((Hugs))) to you.

 

BTW, shot in the dark, but have you looked into Lyme Disease? My dh went undiagnosed for several years as well, and a false-negative test result led us down the wrong path until we learned how common they are. Anyway, worth looking into if you haven't already.

 

Your children are lucky to have such a caring mother. Merry :-)

 

Very wise words here! Print this out and put it on your fridge!

 

Both my husband and I have chronic illnesses that keep us very much at home. My husband is a stay at home Dad (always has been, even before illness) and has Crohns Disease. I have Rheumatoid Arthritis.

 

We cannot "make plans" we have to go day by day, because usually one of us is not having a good day. Merry has said all that I would say to encourage you, so I won't repeat it, I'll just ((hugs))!

[LizzyBee]

I have chronic leukemia. Even though it's manageable and I will probably die from something else, I struggle with fatigue. I work outside the home and used to also do the homeschooling. At this point, dh has taken over the homeschooling and most of the housework, and I just work and sleep. My homeschooled dd is dyslexic, and I am still doing her reading tutoring, too. It's hard when we make plans and then I can't follow through. Today I had morning and afternoon plans, but I had to cancel the afternoon plans because I was wiped from the morning activities. When we're on vacation, I sometimes can't participate in all the activities, and it's hard to send dh and dds off to have fun while I rest alone at the hotel.

 

Our circumstances are not quite the same, but I completely understand the frustration and guilt you feel. I agree with others that it's a false guilt; your kids love you and are happy, and that's what matters. :grouphug:

[Mom-ninja.]

It's hard.

 

I hope you find a diagnosis and are able to get treatment.

[TracyR]

"-take advantage of other people willing to take them to the activity.

-invite other people over to your home for once a week classes or a playgroup

-invite kids over frequently

-send them to summer camps where they can make friends from a larger pool of kids.

-Give them email accounts to keep up with those friends.

-If *you* don't feel up to keeping them connected, you can help them take the initiative to make their own connections. As long as they ask permission, it's all cool. Let them be pro-active.

-Search harder to find things you *can* make happen. If the issue is you aren't up to driving, well find activities in the evening that Dad can take them to. Many sports have evening practice or lesson options.

-Take advantage of surrogates like Grandma. They can drive, take them on outings, teach them to cook or knit, etc. If you don't have a grandma figure, adopt one. "

 

Your not alone. I suffer from thyroid problems and whatever else. I'm miserable and tired yet some how we get things done. I find that we don't do as much as we used to but we figure things out as they come.

My youngest also has medical problems from a rare condition so life revolves around medical stuff here.

 

We live day by day that's for sure. And honestly my girls aren't the worse for wear. I know they have learned to be more sympathetic to those with medical problems and for that I am greatful.

 

I too have pangs of feelings of guilt. But after having my girls in school the last few years and them asking to come back home let's me know we are doing just fine.

I do find that getting the girls involved with things forces me out and I feel a little better just for a little bit.

I agree its a false guilt that you don't need to dwell on and know that they love you regardless of what you do or do not do.

[Peaceful Isle]

I have suffered with an undiagnosed illness (probably autoimmune disease of some kind) for the past few years, and it has greatly limited the number of outside activities my kids participate in. I have limited my driving, so we spend way more time at home than I would like to. I was wondering how others in this situation handle this? My kids seem happy enough, but I feel so guilty. I also feel so bored and lonely being home so much. They do get out on weekends with Dad, or we will all go out as a family, and to church. They get along well with each other and play together, but I'm concerned they need more socailization especially as they get older. This summer has been absolutely horrible with the heat, I'm hoping thigs will improve some as we move into fall.

 

Yes, my husband and I both have a chronic autoimmune diseases. He has MS, and it has recently gone into remission, though. Praise God.

 

Please don't feel guilty. You are doing the best you can. Sounds like you have a great family. If nothing else, your children will grow up to be compassionate adults, understanding how chronic disease can affect people.

Do what you can to have fun activities for them when you feel well, take breaks when you are the sickest. That is what I do.

Hugs to you ! I am so sorry you are suffering. I pray you find answers to your illness, and maybe start on the road to recovery soon!!:grouphug:

[hsmom2011]

:grouphug::grouphug::grouphug: Hugs to everyone! Thank you so much for your responses. It feels so good to know there are so many here who care so much. :grouphug::grouphug::grouphug:

[heritagelearningacademy]

I have fibromyalgia. While it isn't so much a chronic disease, it has some major affects from time to time. :(

 

I have to nap a couple of times a week or I end up in great pain and sick. terrible immune system for me goes hand in hand with it. I have kids 5, 8, and 12 who can let me rest so that helps.

 

Some days we don't get everythign done for school, but when I am having a good day, we crank it out. It varies.

 

We do sports in the evenigns and a co-op during Friday mornings. I drive to sports and hubby meets us there usually and then I come home sometimes. It depends on how I am doing.

 

Let any guilt you have go. Your kids have you with them and that is a blessing. When you are feeling well enough, that's when you do extra special things. Or, it is when you sit and cuddle more. Kids don't remember all the things they did...they remember the parent who was with them. For example, I played softball growing up. Don't remember my teams so much, but remember my dad helped coach and my mom ran the concession stands. She would always have a licorice rope for me after the game. Those memories warm my heart...not the fact that I played a sport! Hugs!

Edited August 12, 2012 by heritagelearningacademy

[happycc]

IgA Nephropathy (a systemic and kidney autoimmune disease) and Fibromyalgia.

 

 

It has been very very hard over the years with very minimal family support. Whatever family support I have been given has been given with lots of grief and unsupportive comments and such. I have had numerous emergency visits, hospital stays (even on Christmas day and on my birthday and on my children's birthdays), and doctors visits galore. I have been told not to have anymore kids since my 3rd child but I am having my 5th now. My only issues is just kidney stones this entire pregnancy and all of my births are uncomplicated.

 

So all you can do is take one day at a time. Your children are fed, cared for medically and physically, and have a roof over their heads. They have two parents who love and care for them.

 

They will grow up and learn that you did the best that you could and that truly is what happens to most of us when we finally grow up and have kids of our own. We forgive our parents and realize that they did the best they could and really they weren;t that bad of parents.

 

There is no perfect or ideal way to raise and homeschool your kids. Some kids are homebodies anyways. I have a friend whose family did all kinds of camping trips and outings and she married a man who was adopted by an older couple who did not take him out and about much at all. He is pretty much a homebody and doesn't have regrets or resentment about the way he was raised. In fact while his wife was pregnant he told her that he would be ok should they have a special needs child and they do. They have a son with spinal bifida and he is a stay at home daddy and he is a great father. I am sure that being raised by older invalid parents helped become patient, loving and accepting of his own family and their limits.

 

Take that guilt and throw it far far away.

 

I am sure that the kids are playing with the toys that they have and coming up with really interesting and creative ways to play and be imaginative. I did not have a driver's license all last year and my kids have learned to do so much. They have learned to cook, play with all their toys and come up with all kinds of interesting games and play all their board games. I very very rarely hear them say "I'm bored" since this all has happened. They don;t rely on outside activities to entertain them. They have their minds and their own imaginations. I can say the kids are even closer as a result.

 

You are raising kids who will be tolerant and compassionate of those who suffer. You are raising kids who will learn to be flexible and that life is full of disappointments but it is how you deal with the disappointments that matter. They will learn to make the best of life's frustrations and disappointments. Plus you may be raising future doctors who want to find a cure for whatever ailment you have.

 

HTH!

Edited August 12, 2012 by happycc

[Sue G in PA]

My friend, Maggie, at Bright Ideas Press just posted this on her FB page a few days ago. I thought it might encourage you. When I was deep in the pit of depression (yes, it can be a chronic illness, lol) the guilt I felt at not being able to really "engage" with my kids, go out, have fun, etc. was often worse than the depression itself. Anyway, :grouphug: and I hope this post encourages you:

 

http://brightideaspress.com/2012/08/homeschooling-when-mama-has-a-chronic-illness/

[PeterPan]

There were a few years there where we planned a "Mom's Day Off" so we had actually *planned in* a day where I wouldn't be available. We put it in our schedule for once a week, and it was stuff I knew she could do independently at a time when she wouldn't have been able to do her whole regular schedule independently. (too young to do it all the time but ok to do it one day a week with the right things) It gives you a plan for those days when you're really not up to your regular stuff.

[Mommyfaithe]

:grouphug:

I have been homeschooling with chronic health issues for a long time.

 

I write about it in my blog....sometimes....when I have the energy:tongue_smilie:

 

:grouphug:

 

I am not great with advice, but I share my experience.

[Susie in MS]

I do have chronic illness, but it doesn't have me on my back all of the time. Good thing too, because I provide our entire income of $140, or less, a week. My dh has been disabled for years, but because we have no insurance and no money we have not been able to provide the mountain of proof the disability office requires. Simple proof is not enough for them.

 

I have been blessed that my employer (I am currently doing care giving for the elderly) allows me to bring my dd over to his house to hs.

 

But there is not a week that goes by that I don't wish my dd could be part of a hs support group like my older 3 used to be. Not only is she stuck home because we have no money for anything, she is practically an only child as her 3 siblings are all grown and living their lives at college or married.

 

Threads like this one are a blessing. I like what one of you said about God's curriculum not always being the same as ours. I may not be able to buy fancy this or that, but my dd is learning about loving and caring for those who are not able to do for themselves. I also like what was said about too many play dates teaching one to expect to be entertained too much and self centered. I have never thought about that.

 

So OP I can relate in some ways (though we have different circumstances), and to those who offered wisdom, thank you!

[Tanikit]

I have diabetes type 1, hypothyroidism, chronic major recurrent depression, PTSD and asthma. In general I get by and manage to live a fairly full life but we do do more when I am feeling well and know how to pack everything away and concentrate on the priorities when things are not going so well - my sugar levels can give problems especially when they drop too low rapidly and can cause us to lose many hours at times. The depression can mean that for a few weeks to months at a time we run slower than normal but I actually find when I force myself to go out more even when I do not feel like it that things are better - the same with the PTSD. We do a lot of balancing of priorities in our family - to make sure that things work best for everyone in the house - one or other of us may have to compromise at times.

[hsmom2011]

Thank you all for your wonderful words of encouragement. :grouphug::grouphug:

[CupOCoffee]

Thank you all for your wonderful words of encouragement. :grouphug::grouphug:

 

You are very welcome! I am also glad to see that our family is not alone in the struggle to home school and live a decent life dealing with chronic illness. I wonder if we could make a side "social group" within WTM board? Does anyone know how that is done?

 

I know they have them for lots of things, so I can't imagine it's that difficult...would you all be interested in having such a group? Let me know, and I will find out how to go about it.

[lillehei]

You are very welcome! I am also glad to see that our family is not alone in the struggle to home school and live a decent life dealing with chronic illness. I wonder if we could make a side "social group" within WTM board? Does anyone know how that is done?

 

I know they have them for lots of things, so I can't imagine it's that difficult...would you all be interested in having such a group? Let me know, and I will find out how to go about it.

 

I would be interested in such a group. I have so many medical problems there are too many to list. My major problems are autonomic neuropathy which includes gastroparesis (paralyzed stomach) and postural tachycardia (heart rate too fast upon sitting or standing) and DM. I haven't been upstairs to our homeschool room in about a year. We have adapted and do together work downstairs on the couch. I just went yesterday to get a conversion van because I am now in a wheelchair. It has been hard on my kids since 2009 when most of this started but they have become resilient, compassionate, caring and independent (they are now 9 & 11). I am so proud of them and we have so much fun together. I have rides for them to a co-op but we have had to scale back drastically. I hope the wheelchair and van give me more mobility. I hope all of you with chronic illness take heart that homeschooling can be done with chronic illness with some tweaking. I would love to talk about this more.

 

Jen

[hsmom2011]

I would be interested in such a group. I have so many medical problems there are too many to list. My major problems are autonomic neuropathy which includes gastroparesis (paralyzed stomach) and postural tachycardia (heart rate too fast upon sitting or standing) and DM. I haven't been upstairs to our homeschool room in about a year. We have adapted and do together work downstairs on the couch. I just went yesterday to get a conversion van because I am now in a wheelchair. It has been hard on my kids since 2009 when most of this started but they have become resilient, compassionate, caring and independent (they are now 9 & 11). I am so proud of them and we have so much fun together. I have rides for them to a co-op but we have had to scale back drastically. I hope the wheelchair and van give me more mobility. I hope all of you with chronic illness take heart that homeschooling can be done with chronic illness with some tweaking. I would love to talk about this more.

 

Jen

 

:grouphug::grouphug:

Edited August 12, 2012 by hsmom2011

[hsmom2011]

You are very welcome! I am also glad to see that our family is not alone in the struggle to home school and live a decent life dealing with chronic illness. I wonder if we could make a side "social group" within WTM board? Does anyone know how that is done?

 

I know they have them for lots of things, so I can't imagine it's that difficult...would you all be interested in having such a group? Let me know, and I will find out how to go about it.

 

Sounds good to me! I think you click on community at the top of the page, then social groups. I don't know how to set it up from there though.

[fiddle]

My DH is home with an undiagnosed neurological condition and I work full time and share homeschooling duties including a SN dd. I would love to have a group here for us! Last year wasourfirst year homeschooling and it was a tough transition.

 

Paula

[Pen]

Yes. I am another such, and compounded by being a single mom. Would also be interested in a side forum since parents' "special needs" seems as important sometimes as the children's--and sometimes they seem to go together also.

 

Meanwhile, :grouphug:, and I agree that you need to think about what you can give (and are giving) more than what you cannot.

 

We have found things that we can do and that work out reasonably well--like a lake where ds can play with friends and I can watch from under a shade tree. If there are other parents to talk with, it is a chance to do that too.

 

We will try the county fair later this week--I am planning to limit my walking as much as I can--things like staying put in one spot in a reasonably cool building and letting ds go wherever he is in sight. That does not always work, but at least sometimes it does. I will try for a cool weekday for less heat and less crowdedness, but, if it feels like too much anyway, we will just have to leave. That is life.

 

We have easy to prepare food available for if I am not up to cooking--and it tends to be things like Mac and Cheese which is both easy and "special" Ds if needed can even prepare that or oatmeal or other simple foods for himself if need be. If I am not up to a part of Homeschool, it gets rearranged. We use more programs and workbooks and curricula with DVD components than I might have used if I were more able to make up my own curricula for everything from scratch.

 

I had to drop out of a local area hs group though which was just too much doing, and also as with the Lyme disease people, too much exposures to problem substances for both myself and my child who also has problems with such things. Luckily there are other children in the neighborhood--probably not more than in OP's own family, but enough to not be totally isolated as to ds's socialization needs. I figure it is more like a childhood might have been in the country back in Rose Wilder's childhood where she was an only child, with a certain number of others to play with, sometimes--but not a ton of activities and play dates etc. I am not even sure that all that is actually good for children, as in The Hurried Child or Simplicity Parenting.

 

Maybe less is more. Maybe some sense of boundaries and limitations is a good thing. For people with things like autoimmunity who have children who may have the same susceptibility, it may even be teaching a lifestyle that will help keep them from getting sick themselves.

Edited August 12, 2012 by Pen

[Made Unfit]

This thread is an extraordinary blessing. It's wonderful to find other mums in similar situations.

 

I have myasthenia gravis, lupus, rheumatoid arthritis, and ulcerative colitis. I have made it a priority to choose curriculum that's easy for me to implement - next school year we're going Galore Park.

 

I do struggle with guilt and lonliness at times. I'm lucky to have a supportive network around me, but it's been a rocky road.

 

I'll keep my eye out for the social group! That sounds like a lovely idea.

 

Each of you are in my thoughts today.

[MerryAtHope]

I know they have them for lots of things, so I can't imagine it's that difficult...would you all be interested in having such a group? Let me know, and I will find out how to go about it.

 

Looks like it's easy to do. I'd be interested too. We could do a weekly check-in type of post as an option too, if that might be more readily seen (I confess I forget to check social groups often!)

[CupOCoffee]

OK, it seems as though there is enough interest to do this, and I think it would be a great place for us to gain the special support that we need...

 

(off to check into this)...be back laters!

 

EDIT: well that sure was easy! I've just created a Social Group called "Chronic Illness Moms" (really couldn't think of anything more clever), come on over an let's start supporting and encouraging each other -- as ones who "get it".

Edited August 14, 2012 by CupOCoffee
new information

[Myeightkiddies]

I have Fibromyalgia, Rheumatoid Arthritis, Hypothyroidism, Asthma, Planar Fasciitis, Sjogren's Syndrome, and they are testing for something else. My heart goes out to you all. :grouphug::grouphug::grouphug:

[hsmom2011]

OK, it seems as though there is enough interest to do this, and I think it would be a great place for us to gain the special support that we need...

 

(off to check into this)...be back laters!

 

EDIT: well that sure was easy! I've just created a Social Group called "Chronic Illness Moms" (really couldn't think of anything more clever), come on over an let's start supporting and encouraging each other -- as ones who "get it".

 

Great! Thank you for setting this up. :001_smile:

[hsmom2011]

n/m

[hsmom2011]

I have Fibromyalgia, Rheumatoid Arthritis, Hypothyroidism, Asthma, Planar Fasciitis, Sjogren's Syndrome, and they are testing for something else. My heart goes out to you all. :grouphug::grouphug::grouphug:

 

And to you also :grouphug::grouphug:

[hsmom2011]

Yes. I am another such, and compounded by being a single mom. Would also be interested in a side forum since parents' "special needs" seems as important sometimes as the children's--and sometimes they seem to go together also.

 

Meanwhile, :grouphug:, and I agree that you need to think about what you can give (and are giving) more than what you cannot.

 

We have found things that we can do and that work out reasonably well--like a lake where ds can play with friends and I can watch from under a shade tree. If there are other parents to talk with, it is a chance to do that too.

 

We will try the county fair later this week--I am planning to limit my walking as much as I can--things like staying put in one spot in a reasonably cool building and letting ds go wherever he is in sight. That does not always work, but at least sometimes it does. I will try for a cool weekday for less heat and less crowdedness, but, if it feels like too much anyway, we will just have to leave. That is life.

 

We have easy to prepare food available for if I am not up to cooking--and it tends to be things like Mac and Cheese which is both easy and "special" Ds if needed can even prepare that or oatmeal or other simple foods for himself if need be. If I am not up to a part of Homeschool, it gets rearranged. We use more programs and workbooks and curricula with DVD components than I might have used if I were more able to make up my own curricula for everything from scratch.

 

I had to drop out of a local area hs group though which was just too much doing, and also as with the Lyme disease people, too much exposures to problem substances for both myself and my child who also has problems with such things. Luckily there are other children in the neighborhood--probably not more than in OP's own family, but enough to not be totally isolated as to ds's socialization needs. I figure it is more like a childhood might have been in the country back in Rose Wilder's childhood where she was an only child, with a certain number of others to play with, sometimes--but not a ton of activities and play dates etc. I am not even sure that all that is actually good for children, as in The Hurried Child or Simplicity Parenting.

 

Maybe less is more. Maybe some sense of boundaries and limitations is a good thing. For people with things like autoimmunity who have children who may have the same susceptibility, it may even be teaching a lifestyle that will help keep them from getting sick themselves.

 

:grouphug:I can relate to so much of this, thank you for sharing.:grouphug:

[ThePW]

This thread is an extraordinary blessing. It's wonderful to find other mums in similar situations.

 

I have myasthenia gravis, lupus, rheumatoid arthritis, and ulcerative colitis. I have made it a priority to choose curriculum that's easy for me to implement - next school year we're going Galore Park.

 

I do struggle with guilt and lonliness at times. I'm lucky to have a supportive network around me, but it's been a rocky road.

 

I'll keep my eye out for the social group! That sounds like a lovely idea.

 

Each of you are in my thoughts today.

 

That's a lot of autoimmune diseases! :grouphug: Have you ever been tested for celiac disease, is there a history of celiac or other AI diseases in your family?

[ThePW]

I have Fibromyalgia, Rheumatoid Arthritis, Hypothyroidism, Asthma, Planar Fasciitis, Sjogren's Syndrome, and they are testing for something else. My heart goes out to you all. :grouphug::grouphug::grouphug:

 

Oh my, another mom with AI diseases, they seem to be so common! I hope you are coping ok with all that :grouphug: At risk of sounding like a broken record, but I'll ask the same as I asked the other mom, have you ever been tested for Celiac disease?

[ThePW]

So, yes, I also have a chronic illness and it can be a challenge, fatigue is a big problem, I have only started to homeschool this year though.

 

It's a long and tedious story, but the short version is that I *believe* that I have Celiac disease.

I started having episodes of severe diarrhea about two years ago, think the worst food poisoning you've ever had and that would be somewhere close to this, they started happening about once a week and I was then unable to get out of bed or function normally for two days afterwards, and then would still be severely fatigued for up five days after that.

 

I had celiac blood tests, they were negative but I should have also had an endoscopy with biopsies to rule it out. My gastroenteroloist failed to do this and instead did a colonoscopy (which cannot diagnose celiac) , "you have IBS" the doctor said, and sent me home.

 

So I went home, scoured the interwebs as I was still having these severe symptoms and was losing a lot of weight rapidly. I started on a gluten free diet and then also ommitted dairy. That helped a lot and the episodes of diarrhea reduced in frequency significantly, but they still would occur every couple of months or so.

 

I read and read and read all about celiac and gluten intolerance for the next year or so. I realised that I have several family members on one side of the family with rheumatoid arthritis which is also an autoimmune disease, that was a red flag for me. I also read that it is widely underdiagnosed and the symptoms are many and varied.

 

about 6 months after all that, my seven year old started to complain of very occasional sore tummies and also a little diarrhea. It was very infrequent and mild though and I didn't think too much off it until I realised that although he was very well outwardly, this had probably been going on for a long time with him.

 

I took him to the doc, pushed her to do celiac bloods (she was not keen) and they came back positive. We went to a super GI Doc this time (I did my homework!) and had the endoscopy, his biopsies were all positive for celiac and he had quite moderate damage to his GI tract.

 

I went on the GAPs diet about 10 months ago and that stopped all my horrible symptoms. I find if I deviate from it too much then I have a tendency towards being ill again.

 

Thankfully my son is very well and did not have to endure a protracted illness before he was diagnosed. :001_smile:

[sandst]

Several Chronic conditions here. Would be interested in joining a group like this.

[Made Unfit]

That's a lot of autoimmune diseases! :grouphug: Have you ever been tested for celiac disease, is there a history of celiac or other AI diseases in your family?

 

Yeah, sometimes I think my body is out to get me! My immune system and I are not really on speaking terms at this point... I just visited a colorectal surgeon and they're now thinking it may be crohn's rather than UC. So a colonoscopy it is. I hope it's not celiac - I love me some gluten!

[eight_gregorys]

I homeschool my six and have been suffering from numerous chronic illnesses over the past 7 years. I have lupus, rheumatoid arthritis, hashimotos, fibromyalgia, chronic fatigue syndrome, and meniere's (an autoimmune ear disease that causes awful vertigo at times).

 

My biggest issues are fatigue, dealing with pain, and dealing with people. Mornings are always tough....even when I'm not flaring. My biggest complaint is probably that people claim, "But you don't look that sick." It is so frustrating because they don't see the infusions I have to get or the numerous injections I have to give myself every week.....that make me sick....just in hopes that I will feel better. It is a tough journey....that I actually don't share with others much because when I've tried, people....even family.....just don't get it. Its not a matter of whether or not I want to do something. Its a matter of I absolutely cannot do it. I'm sure most of you can relate to this unfortunately. Thankfully, I have a very supportive husband and really awesome kids.....so that definitely makes things easier.

[hsmom2011]

I homeschool my six and have been suffering from numerous chronic illnesses over the past 7 years. I have lupus, rheumatoid arthritis, hashimotos, fibromyalgia, chronic fatigue syndrome, and meniere's (an autoimmune ear disease that causes awful vertigo at times).

 

My biggest issues are fatigue, dealing with pain, and dealing with people. Mornings are always tough....even when I'm not flaring. My biggest complaint is probably that people claim, "But you don't look that sick." It is so frustrating because they don't see the infusions I have to get or the numerous injections I have to give myself every week.....that make me sick....just in hopes that I will feel better. It is a tough journey....that I actually don't share with others much because when I've tried, people....even family.....just don't get it. Its not a matter of whether or not I want to do something. Its a matter of I absolutely cannot do it. I'm sure most of you can relate to this unfortunately. Thankfully, I have a very supportive husband and really awesome kids.....so that definitely makes things easier.

 

:grouphug: I totally understand. I don't share my problems with anyone, so I'm sure there are many that wonder why I choose not to participate in this and that. My husband and children are really the only ones that know the extent of my problems. Early on I tried to share with some extended family members, but quickly realized it wasn't a good idea. They started treating me like a mental patient - lol. :confused: :grouphug:

[Guest peggy6e]

I have late-stage Lyme Disease. Before I was diagnosed a year ago, I had seen so many doctors and been told I have AD/HD, Bipolar, Anxiety, Depression, Fibromyagia, and Chronic Fatigue. I also have a spinal fusion and rods. This has prepared me exponentially for having a special needs child with a rare genetic disorder. But I am a weary caregiver. If I had the energy, I would dive into doing the GAPS diet....

 

:grouphug:to all of you. I admire you all as you move on your journeys in finding health, healing and some sort of continuity in your homeschool days!

 

I too wish I could find a curriculum that does not take my limited energy in excessive gathering and prepping time. I frequently comment to husband I can only do two of the following three things: care for myself, care for my children, care for my home. I cannot do all three.

 

Last year, I used a preschool-in-a-box called Mother Goose Time. Fun, consistent, but still required preparation that could overwhelm me. I also supplemented with Joy School. But that is intended as neighborhood coop. It is not meant to be prepared by one mother. But I compromised by using the music and book lists and some of their visuals. What we used was a hit! They loved all of it.

 

I take solace in the peace and rhythm of family work and reading aloud. If my energy wanes or anxiety hovers, I know that preparation of simple meals and participation in simple stories have just as much impact as anything else.

 

Peggy

 

DH, married 12 years: active-duty Coast Guard engineer

DD, 6: Rare Genetic Disorder (Spina Bifida, Hydrocephalus, and more), globally delayed, medically homebound, read more at www.esrastrust.org

DD, 4: advanced and energetic

Working together at CC Cycle 1, Math-U-See Primer, Lamp & Quill Year 1, Let's Play Music (Red Balloons), Speekee, Explode the Code, DoorPosts and Book of Mormon Little Books

[TGHEALTHYMOM]

8 children and severe endometriosis (widespread)

I suspected it over 6 years ago. Suurgery last August confirmed it.

hitch hikers are candidiasis, IBS, and Chronic fatigue as well as allergic reactions to food.:grouphug:

 

I have had Shingles in childhood and Lyme disease 3 times also.

 

No one seems to understand me.

Edited October 4, 2012 by TGHEALTHYMOM