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I have Lupus and Graves Disease/Hyperthyroid

illness lupus thyroid autoimmune disorders

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#1 hmschooling

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Posted 15 December 2011 - 09:06 PM

Oh my...Help?! I'm on lots of meds already. More on the way. Kids are suffering, marriage is suffering, Dh is suffering, school is suffering, house is beyond suffering.... I just got the more official diagnosis today. First thing is to get my thyroid levels down, then we will pinpoint the Lupus...it could be lupus or MS or Raynaud's or a few other autoimmune diseases. I have heart and nerve involvement along with the fatigue, muscle/joint pains, hair loss, etc.

I want my kids to get why mommy isn't Mommy right now. Why I have them doing so much of the house work, and helping with the 2yo so much, and that I'm quite sick but I don't want to scare them. I'm only 31 and have thought for many years that it was mostly heart issues, and the rest was in my head (according to many docs).

Now I know...and the Spoon Theory (AWESOME read) is great for adults, but my kids are pretty young. Any good books to help them comprehend?

Edited by hmschooling, 15 December 2011 - 09:27 PM.


#2 NicAnn

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Posted 15 December 2011 - 09:11 PM

I'm so sorry you are dealing with this.

I don't have any book recommendations..but wanted to share that my mother had MS and MANY other health issues growing up. It was hard on us kids for a while, but we quickly understood what was expected of us and got along fine. I often cared for the youngers and have a special relationship with them as a result. Our relationship changed with our mother, but it ended up being really wonderful.

On a side note, powdered magnesium and large doses of vitamin d3 helped when she was feeling particularly bad.

#3 transientChris

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Posted 15 December 2011 - 09:16 PM

It is hard to be homeschooling when you have chronic illnesses. It is so very hard to have autoimmune diseases since they take so much out of you and others don't understand. I will pray that you get some relief soon and that you get used to your conditions and still have a nice life. I have been living with my autoimmune diseases for 17 years diagnosed and probably 7 years undiagnosed. It does get a bit better when you get more used to the diagnosis.

#4 prairiewindmomma

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Posted 15 December 2011 - 09:51 PM

As someone in the trenches of autoimmune disease, I don't know that my kids (roughly your age) are going to get it from a book. My kids were/are craving stability. I suggest creating a new routine, even if that's you just running life from the couch.

Do you have a crockpot? One of those linchpin moments for us is supper. If you can put something in the crockpot in the morning (at some point), having a hot dinner (even if it's on paper plates with bagged salad) goes a long way towards having a happy husband and family....

Likewise, creating an end-of-week family bonding moment (netflix & icecream or popcorn) can go a long way towards ameliorating some of the strain that occurs when kids become a bit, um, resentful about having to take on more household stuff.

I've also learned to bundle things so that dh/oldest child doesn't feel overwhelmed....taking the laundrybaskets (folded, clean) to the bottom of the stairs so that dh just has to take a minute to take them up in the morning (and carry the dirty ones down in the morning)....I find that having them work 10 minutes solid twice a day is better than a lot of little things during the day.

Likewise, training your 2 yo (mine is newly 3) can go a long way as well. We keep a series of toys in rotation and having her on a routine goes a long way towards keeping her mischief making down.

HTH (and feel free to ignore it all if it's not helpful to you)...

#5 Lovin Learnin

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Posted 15 December 2011 - 10:10 PM

:grouphug: Another autoimmune sufferer here. My worst years were when my boys were young. It was HARD, and I wasn't even homeschooling then. I agree with the suggestion of using your crockpot to make sure there is something cooking most days. It will make them have a sense of normalcy and will make you feel productive. With any luck your doctor will soon find a way to put you into remission. I'm sorry you have to deal with this.

#6 TracyR

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Posted 15 December 2011 - 10:34 PM

So sorry to hear your going through this. I have hypothyroidism and just having a tough time with it all. I know how you feel. But your old normal is going to be replaced with a new normal. My husband now helps and tries the best that he can to eliminate some of the load from my days.

I know all to well the every day is a struggle feeling.
I suggest you check out the Stop the Thyroid Madness board ( www.stopthethyroidmadness.com ) and educate YOURSELF. Don't depend on the doctors to get it right because many don't have a clue as how to treat thyroid disease.

My suggestion is to start giving others some responsibility. My husband helps with cooking, cleaning up at times when I'm feeling icky, My oldest helps with my 5yr old in the morning because my starts to the mornings are a bit rough right now. My 11 and 8yr old help set the kitchen table, pick up their toys, and so forth.
Sadly your old normal isn't going to be right know. Just try and enjoy your family as much as you can and leave the little stuff alone for a while.

#7 elizabeth

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Posted 15 December 2011 - 10:40 PM

I also have an auto immune disorder. I have Rheumatoid Arthritis and they are trying to rule out a nice little overlay of Fibromyalgia...life was hell until I was diagnosed and treated. It was debiitating to have real symptoms , have an ortho order an MRI only of the neck and say that it looked relatively normal. I am on steroids and can live. Have hope that the Rheumatologist can diagnose you. My family has been amazing and my daughter actually prides herself on how well she can get me through a flare up. It gets better.

#8 BatmansWife

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Posted 15 December 2011 - 10:58 PM

I'm so sorry!

I'm glad you finally got an official diagnosis. But....I wish the news would have been better. I hope that now you know what it is, that you can get some treatment and begin to feel better soon. Hang in there!!!

:grouphug: :grouphug:

#9 Mom-ninja.

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Posted 15 December 2011 - 11:06 PM

:grouphug: It is hard when you feel sick almost all the time. I'm just now starting to feel like my presick self.

I've been diagnosed with 2 autoimmune diseases(within weeks of each other), and I'm being tested for a 3rd.

The good news is that I know my symptoms are not in my head. I also am learning what to do to make myself healthy again.

I tried to look up the book you mentioned, and I find nothing. Do you have a link?


I found that my kids want to help when I'm not feeling well. I also don't want my kids to grow up with memories of having a constantly sick mom.

I don't feel guilty at all for shortening lessons to do fun activities when I feel good.

#10 JessicaLady

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Posted 16 December 2011 - 12:06 AM

I would think your kids would get more from you talking to them than from any book. Every family has it's own 'normal'. Some are more normal than others. But, we deal with the one we've got. My very good friend has CF and 3.5yrs ago had a double lung transplant. Her children were ages 12, 8 at the time. They talked a lot about being hopeful (while she was on the transplant list) and how much better it is to be positive. She talked about how that hope for a new chance was a big part of helping her make it through each day.

Her children did receive counseling (for about 2yrs) b/c it was difficult for them to watch their mother's health deteriorate prior to her transplant. There was a lot they felt they couldn't talk about w/ mom/dad and was good for them to have a nonbiased person to share their feelings. In addition, they have all these great tools to better help them deal with normal teen stuff and they've even stated how much it helped them.

I'm very sorry it is all such a trial. I have my own chronic health conditions but it's been very helpful having my husband come along to my appts. It helps him see that my symptoms are in fact part of a medically diagnosed disease and not that I'm 'lazy' or whatever. Perhaps this would help you (if he was willing). Also, he can remember stuff I miss. It's always nice to have an extra set of ears, particularly when visiting specialists.

#11 HiddenJewel

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Posted 16 December 2011 - 01:18 AM

I was diagnosed with Graves with a hyperthyroid about 14 years ago. I finally went with the radioactive iodine after about 6 months of searching for answers. Hyperthyroid was solved (now hypo without meds) but I have learned so much about thyroid and how missing nutrients affect it, I wish I could have a redo to at least try something different.

#12 Lizzie in Ma

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Posted 16 December 2011 - 07:16 AM

Oh my...Help?! I'm on lots of meds already. More on the way. Kids are suffering, marriage is suffering, Dh is suffering, school is suffering, house is beyond suffering.... I just got the more official diagnosis today. First thing is to get my thyroid levels down, then we will pinpoint the Lupus...it could be lupus or MS or Raynaud's or a few other autoimmune diseases. I have heart and nerve involvement along with the fatigue, muscle/joint pains, hair loss, etc.

I want my kids to get why mommy isn't Mommy right now. Why I have them doing so much of the house work, and helping with the 2yo so much, and that I'm quite sick but I don't want to scare them. I'm only 31 and have thought for many years that it was mostly heart issues, and the rest was in my head (according to many docs).

Now I know...and the Spoon Theory (AWESOME read) is great for adults, but my kids are pretty young. Any good books to help them comprehend?


I am so sorry you are so sick. :grouphug::grouphug:
I have to ask, did they also check for Lyme? It can cause all of that too. It can really mess with your thyroid.
There are some amazing folks on chronic illness support groups, they've been a lifesaver for me though it is my kids who are ill.
Hope and pray you will be on the mend quickly.

#13 Mommyfaithe

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Posted 16 December 2011 - 07:23 AM

Oh my...Help?! I'm on lots of meds already. More on the way. Kids are suffering, marriage is suffering, Dh is suffering, school is suffering, house is beyond suffering.... I just got the more official diagnosis today. First thing is to get my thyroid levels down, then we will pinpoint the Lupus...it could be lupus or MS or Raynaud's or a few other autoimmune diseases. I have heart and nerve involvement along with the fatigue, muscle/joint pains, hair loss, etc.

I want my kids to get why mommy isn't Mommy right now. Why I have them doing so much of the house work, and helping with the 2yo so much, and that I'm quite sick but I don't want to scare them. I'm only 31 and have thought for many years that it was mostly heart issues, and the rest was in my head (according to many docs).

Now I know...and the Spoon Theory (AWESOME read) is great for adults, but my kids are pretty young. Any good books to help them comprehend?


:grouphug::grouphug::grouphug:
I am so sorry you are feeling so sick. I have Hashimoto's, PCOS and Fibromyalgia( neuropathy ). Yep, it was in my head too...until my blood work and a lost baby proved otherwise.

There were many days last year where I could not even get out of bed...dh would literally pick me up and get me moving.....

It gets better. Once you get your thyroid in control, you may feel much better. Also, you need ultimate nutrition....no gluten and low carbs. It will help your bodies immune system to work properly. The body can view gluten as an invading force.

Figuring out what is wrong is the hard part of the battle. Now, your enemy has a name, and can be fought.
:grouphug::grouphug::grouphug:

When you need a shoulder ....we are all here for you.

Faithe

#14 Mommyfaithe

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Posted 16 December 2011 - 07:26 AM

I am so sorry you are so sick. :grouphug::grouphug:
I have to ask, did they also check for Lyme? It can cause all of that too. It can really mess with your thyroid.
There are some amazing folks on chronic illness support groups, they've been a lifesaver for me though it is my kids who are ill.
Hope and pray you will be on the mend quickly.


Do not want to hijack, but can you post links for these boards. I am Lyme exposed, ds is post Lyme, dh was treated successfully....Lyme disease really s*cks!!
Faithe....who usually does not like to talk health issues...but is face to face with them these days. I'd much rather be talking new curricula...:D:auto:

#15 JudoMom

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Posted 16 December 2011 - 07:37 AM

Oh my...Help?! I'm on lots of meds already. More on the way. Kids are suffering, marriage is suffering, Dh is suffering, school is suffering, house is beyond suffering.... I just got the more official diagnosis today. First thing is to get my thyroid levels down, then we will pinpoint the Lupus...it could be lupus or MS or Raynaud's or a few other autoimmune diseases. I have heart and nerve involvement along with the fatigue, muscle/joint pains, hair loss, etc.

I want my kids to get why mommy isn't Mommy right now. Why I have them doing so much of the house work, and helping with the 2yo so much, and that I'm quite sick but I don't want to scare them. I'm only 31 and have thought for many years that it was mostly heart issues, and the rest was in my head (according to many docs).

Now I know...and the Spoon Theory (AWESOME read) is great for adults, but my kids are pretty young. Any good books to help them comprehend?


:grouphug::grouphug::grouphug:

I have autoimmune hepatitis and possible lupus or sjogrens. I'm also hypothyroid. I'm still not completely normal, but am doing so much better after a year of medicine adjusting--last Christmas I was in too much pain to even address Christmas cards, and I just mailed 25 this week that were hand addressed mostly legibly :001_smile:.

We've just talked with the boys over time. It was hardest when we didn't know what was going on (the dx I have is one of the best I could've gotten out of all the stuff they were looking for), and I was sick and scared and sleeping for hours each day. But once I got a plan of attack and mostly knew what I was dealing with, it was easier to talk with them.

:grouphug::grouphug::grouphug:

#16 Lizzie in Ma

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Posted 16 December 2011 - 07:40 AM

Do not want to hijack, but can you post links for these boards. I am Lyme exposed, ds is post Lyme, dh was treated successfully....Lyme disease really s*cks!!
Faithe....who usually does not like to talk health issues...but is face to face with them these days. I'd much rather be talking new curricula...:D:auto:


I was going to PM this as to not hijack the thread but then thought perhaps someone else might need them too.
The most wonderful support has come from the boards at Lymenet and a group of wonderful folks on a FB group called Lyme Disease Awareness
I am in the middle of hell with our girls. After 6 years of getting more and more ill our 15 year old was finally diagnosed with it. After 6 months of treatment she is worse off than ever, especially cognitively and mentally. And now the little one has it too but she isn't as ill thank God. Our lives today are completely different, our days revolve around alarms for pills and supplements and pain levels. I have said very little on these boards but I will share that I have felt totally estranged from this board lately, which is sad because it has been part of my day for 10 years. I don't like to complain here so I have not. Anyway, if you are on FB, please do friend me. Look under Liz McGann Borden. Lyme is hell. Having kids with Lyme is it's own special hell. Support it absolutely critical.

Sorry for the hijack OP. I will be in prayer for all of you with chronic conditions. And I am grateful for all of you.

#17 hmschooling

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Posted 16 December 2011 - 11:15 AM

:grouphug: It is hard when you feel sick almost all the time. I'm just now starting to feel like my presick self.

I've been diagnosed with 2 autoimmune diseases(within weeks of each other), and I'm being tested for a 3rd.

The good news is that I know my symptoms are not in my head. ABSOLUTELY amazing to know this now :) I've been accused of having conversion syndrome a few years ago. I also am learning what to do to make myself healthy again.

I tried to look up the book you mentioned, and I find nothing. Do you have a link? You can find the Spoon Theory article here.


I found that my kids want to help when I'm not feeling well. I also don't want my kids to grow up with memories of having a constantly sick mom.

I don't feel guilty at all for shortening lessons to do fun activities when I feel good.

.

Edited by hmschooling, 16 December 2011 - 11:18 AM.


#18 hmschooling

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Posted 16 December 2011 - 11:29 AM

I would think your kids would get more from you talking to them than from any book. Every family has it's own 'normal'. Some are more normal than others. But, we deal with the one we've got. My very good friend has CF and 3.5yrs ago had a double lung transplant. Her children were ages 12, 8 at the time. They talked a lot about being hopeful (while she was on the transplant list) and how much better it is to be positive. She talked about how that hope for a new chance was a big part of helping her make it through each day.

Her children did receive counseling (for about 2yrs) b/c it was difficult for them to watch their mother's health deteriorate prior to her transplant. There was a lot they felt they couldn't talk about w/ mom/dad and was good for them to have a nonbiased person to share their feelings. In addition, they have all these great tools to better help them deal with normal teen stuff and they've even stated how much it helped them.

I'm very sorry it is all such a trial. I have my own chronic health conditions but it's been very helpful having my husband come along to my appts. It helps him see that my symptoms are in fact part of a medically diagnosed disease and not that I'm 'lazy' or whatever. Perhaps this would help you (if he was willing). Also, he can remember stuff I miss. It's always nice to have an extra set of ears, particularly when visiting specialists.


That bolded part...HUGE. I've been more and more "lazy" over the years and DH wants a rather clean home...it's a standard that's difficult to reach even totally well. He does help some, and my kids help a lot.

10yo did 7 loads of laundry start to finish in 2 days. The 8 &10yo unload/reload the dishwasher, three biggest have table jobs after meals, 2yo JUST turned 2 and is learning some very small things, but that training is more tiring that just doing it myself, but he does enjoy helping.

We've cut out Sunday evening community group and kids choir during the comm group even though I really need to connections I'd build there and the kids have no other group activities they do besides AWANA. Other than church, we don't really do anything else. Occasionally meet with the homeschool group when we feel like it.

Since I have hypERthyroid, I'm very thin and being that I have an autoimmune issue, my muscle mass is so, so low...So I'm just puny! I'm 31 and a whopping 108lbs. I've had 4-5 miscarriages as well, and I have the cognitive and memory issues as well right now. My anti-thyroid med is starting to work some, but my beta-blocker to control my heartrate until the meds knock out the thyroid hormones are making me so very sleepy and make my BP low.

As sleepy as I am, the thyroid gives me insomnia so I start ambien tonight hopefully (waiting on insurance to approve it!)

HOW in the world do you get school done when you feel like all you want to do is sleep and your body is puny so much at times that your arms are too heavy to hold up, or you feel like one big giant bruise? I know I want them home..in fact, I couldn't do it without the big ones home b/c they help with the two littles who aren't school age yet.

We are praying our landlord will let us out of the lease if we find someone else to rent our home b/c we really need to be closer to town and doctors and sanity savers and DH's parents who could help. We live out in the middle of no where.

You know what to blame the lack of cohesiveness on in this post. LOL Thank you all so much for offering advice and words of encouragement.

#19 KathyBC

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Posted 16 December 2011 - 11:48 AM

I have Graves Disease/hyperthyroid. I can remember being breathless walking up the stairs; how shaky, weak and scattered I was. Fortunately my doctor caught this condition right away - apparently the longer it is left undiagnosed, the longer it can take to get it under control. I explained things to the kids roughly the same way the endocrinologist explained it - there was a gland that wasn't working properly. It was telling my brain to pump hormones through me all the time, when I didn't need them. So I was taking medication that would help my body ignore those messages.

I just want to encourage you - once the beta-blocker got my heart rate under control I felt So Much Better. I've been on propylthyracil for over 11 years, and have been able to manage my thyroid levels fairly well. It's amazing how much more can get done once one's metabolism is closer to normal.

#20 Parrothead

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Posted 16 December 2011 - 11:53 AM

I have Grave's too. I'm currently in my 5th year with it and am unmedicated.

I would urge you to do all the research you possibly can before making any kind of permanent decision (surgery/radioactive iodine).

Once you get your meds regulated to the point you can function fairly normally again you'll feel better.

If you have any questions you can PM me. :grouphug:

#21 hmschooling

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Posted 16 December 2011 - 12:13 PM

I have Graves Disease/hyperthyroid. I can remember being breathless walking up the stairs; how shaky, weak and scattered I was. Fortunately my doctor caught this condition right away - apparently the longer it is left undiagnosed, the longer it can take to get it under control. I explained things to the kids roughly the same way the endocrinologist explained it - there was a gland that wasn't working properly. It was telling my brain to pump hormones through me all the time, when I didn't need them. So I was taking medication that would help my body ignore those messages.

I just want to encourage you - once the beta-blocker got my heart rate under control I felt So Much Better. I've been on propylthyracil for over 11 years, and have been able to manage my thyroid levels fairly well. It's amazing how much more can get done once one's metabolism is closer to normal.

I'm also on PTU (prophylthyracil)...It's helping a little so far, and more quickly than normal, b/c as the doc said, my levels are high enough any tweaking makes a noticeable difference. I can't wait to feel normal again! I can't take a high enough dose of the beta blocker to keep me totally normal there...it lowers my BP too much. Been on beta blockers for so, so long. They thought I had heart condition first. Didn't realize it was this that was causing it.

#22 hmschooling

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Posted 16 December 2011 - 12:17 PM

I have Grave's too. I'm currently in my 5th year with it and am unmedicated.

I would urge you to do all the research you possibly can before making any kind of permanent decision (surgery/radioactive iodine).

Once you get your meds regulated to the point you can function fairly normally again you'll feel better.

If you have any questions you can PM me. :grouphug:


Not doing ANY permanent treatments at all. Just anti-thyroid meds (PTU) and other symptom control meds until it's under control. Doctor said there are multiple nodules and those grow to a goiter. Eventually, my levels will level out and my thyroid will burn out basically...then I'll start thyroid medication b/c I'll be hypOthyroid instead. My TSH was practically 0. Hormone levels were quite high, so I guess I went too long misdiagnosed to just level it out and be ok. I've gone 9years thinking it was just my heart and the rest was "just in my head".

#23 transientChris

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Posted 16 December 2011 - 12:39 PM

I got diagnosed at age 30 so close to your age. I never used a book for my kids. I just explained things as they were able to comprehend and they learned a lot by watching.

#24 annandatje

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Posted 16 December 2011 - 12:51 PM

...HOW in the world do you get school done when you feel like all you want to do is sleep and your body is puny so much at times that your arms are too heavy to hold up, or you feel like one big giant bruise? I know I want them home..in fact, I couldn't do it without the big ones home b/c they help with the two littles who aren't school age yet. ...


Could your husband homeschool the 10 and 7 year olds in the evening so that their education does not suffer?

#25 HiddenJewel

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Posted 16 December 2011 - 02:23 PM

Not doing ANY permanent treatments at all. Just anti-thyroid meds (PTU) and other symptom control meds until it's under control. Doctor said there are multiple nodules and those grow to a goiter. Eventually, my levels will level out and my thyroid will burn out basically...then I'll start thyroid medication b/c I'll be hypOthyroid instead. My TSH was practically 0. Hormone levels were quite high, so I guess I went too long misdiagnosed to just level it out and be ok. I've gone 9years thinking it was just my heart and the rest was "just in my head".


Research using iodine and see if it would fit for you. It really helps some and others can't use it. But the hyper, the nodules, the goiter can all be linked to low iodine levels.

#26 eight_gregorys

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Posted 16 December 2011 - 02:35 PM

I was diagnosed with autoimmune thyroid disease (Hashimotos) 7 1/2 years ago at 23. Two years later, I was diagnosed with Lupus and Fibromyalgia. So far I have had renal, hepatic, and lung involvement. Plus of course the joint pain, muscle pain, and hair loss. I'm starting to show joint deformities as well, so my rheumy at this point suspects I have an overlap of rhematoid arthritis as well.

My biggest advice would be to get a rheumatologist you trust and that LISTENS to you. I have complained about my hands bothering me for 3 years. It wasn't until this year with a new rheumalogist that x-rays showed joint erosion and he states that now I have the beginning of ulnar drift. My last rheumatologist consistently told me it was just par to having lupus. Well it wasn't, and I have irreversible joint damage and I just turned 30.

With small children I think it is difficult to have them grasp that something is wrong. A lot of the problem I have had is that I don't "look sick" on the outside. It is so frustrating to hear people say that. I have learned the hard way to just let things go. The house is a mess.....oh, well. Do what you can and let the rest go. It was so hard for me....but it really came down to prioritizing things. I have had always been one to go, go, go and do, do, do. Obviously, I am just not capable of that anymore. Just know that you will feel better....I know it probably doesn't seem like it right, but once your doctor helps find the right treatment...you will feel better.

If you have an specific questions, feel free to PM me. I'd be happy to help, if I can.

Blessings,

#27 Mom-ninja.

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Posted 16 December 2011 - 03:33 PM

The "don't look sick" is what is hard. It makes people not take you seriously.

Everyone, but my sister and dh, doesn't understand just how careful I have to be to avoid gluten completely because I have Celiac Disease. Also my reaction to gluten is not immediate. I don't begin to vomit violently the second gluten hits my mouth. It's not until an hour or so later that I'm reduced to a puddle on the bathroom floor. Only my dh (and kids) have seen me in the middle of a reaction. Many people don't understand how bad or serious it is for me.

I hear all the time, "Can't you just have a tiny bit? It's not like you'll actually die from eating it."

Actually, gluten could kill me but it would be a long, slow, and painful way to go.
When I told my dad that he just rolled his eyes, and said he would not put up with my exaggeration. :001_huh:

Have you tried a bit of yoga? I have Hashimoto's (due to celiac) and I experience hypER at this point. Yoga give my muscles low impact strength training. My Dr. also tells me that the yoga breathing should help my racing heart and shakiness,but so far that hasn't been the case for me.

Thanks for the link. I'll read that tonight.

#28 Mommyfaithe

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Posted 16 December 2011 - 03:54 PM

As someone in the trenches of autoimmune disease, I don't know that my kids (roughly your age) are going to get it from a book. My kids were/are craving stability. I suggest creating a new routine, even if that's you just running life from the couch.

Do you have a crockpot? One of those linchpin moments for us is supper. If you can put something in the crockpot in the morning (at some point), having a hot dinner (even if it's on paper plates with bagged salad) goes a long way towards having a happy husband and family....

Likewise, creating an end-of-week family bonding moment (netflix & icecream or popcorn) can go a long way towards ameliorating some of the strain that occurs when kids become a bit, um, resentful about having to take on more household stuff.

I've also learned to bundle things so that dh/oldest child doesn't feel overwhelmed....taking the laundrybaskets (folded, clean) to the bottom of the stairs so that dh just has to take a minute to take them up in the morning (and carry the dirty ones down in the morning)....I find that having them work 10 minutes solid twice a day is better than a lot of little things during the day.

Likewise, training your 2 yo (mine is newly 3) can go a long way as well. We keep a series of toys in rotation and having her on a routine goes a long way towards keeping her mischief making down.

HTH (and feel free to ignore it all if it's not helpful to you)...


:iagree: so much with this post. Also, I find bedtime is a BIGGIE here...time where I just sit and cuddle my kids and read to them, talk about the day, etc. Sometimes I am so spent by the end of the day that once we are finished with dinner, I want to throw myself on my bed....Lately, I have been doing just that, and I am finding it is not good for my kiddoes....
We have to go back to our nighttime routine. I have written a few posts on my blog about homeschooling through chronic illness. It can be done...and done well, but it takes a strong commitment, and a large amount of flexibility.

Faithe

#29 LG Gone Wild

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Posted 16 December 2011 - 05:36 PM

I'm also on PTU (prophylthyracil)...It's helping a little so far, and more quickly than normal, b/c as the doc said, my levels are high enough any tweaking makes a noticeable difference. I can't wait to feel normal again! I can't take a high enough dose of the beta blocker to keep me totally normal there...it lowers my BP too much. Been on beta blockers for so, so long. They thought I had heart condition first. Didn't realize it was this that was causing it.


Blech! I HATED that medicine. HATED it! I ended up switching to tapazole.

In the end I got the iodine treatment. Having an overworking heart was really scary.

#30 helena

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Posted 16 December 2011 - 08:01 PM

:grouphug:
I'm starting to realize that talking to my kids about having Lupus is an on going conversation. We talked about it when I got diagnosed, and I can sense that it's time again. I don't mean in a casual way. I don't pretend that I don't have it. Our lives are affected by it on a daily basis. I can't be in the sun or really drive, so... unfortunately it's a bit of a pain for everyone sometimes.
I mean an actual talk about what Lupus is and what it means for me... and them. The kind where mom cries like a baby and everyone laughs at me. :D I also want to make sure they don't have any scary misconceptions about Lupus. They can see that I'm in pain, ill, and confused. I'm sure they've heard me talking to my husband and crying. I just want to make sure they don't think that I'm going to spontaneously combust. Sometimes my girls come up with strange ideas about things... :001_smile:

I definitely think your husband should (if he hasn't already) call a housekeeping service. For some people a messy, dirty, or chaotic home is more than they can bear. Especially with 4 kids and an ill wife, I think he ought to make this need be met. No guilt for him, everyone deserves to be cozy in their home. No guilt for you, no brainer, it's too much and sets you up to feel bad about yet another thing. Even once a month to have someone come in and do deep cleaning. Maybe a family member or friend would be willing?

I once had a massive Lupus freak out here... :001_smile: This can be a very loving and resourceful place. Have you searched old threads here? There are some good ones on homeschooling with chronic illness.

Also, I think you're awesome for teaching the kids to pull together with housework and family responsibilities. That's something good out of a bad situation in my opinion. Let your little family rally round you. I know how many things a mom can feel guilty about when she's ill. Especially when days turn to years...
I highly suggest doing a search here. Lot's of us have worked curriculum for all it's worth, to make it work while at our sickest.

:grouphug: Love to your whole family. You're not alone. :grouphug:

Edited by helena, 16 December 2011 - 10:00 PM.


#31 hmschooling

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Posted 16 December 2011 - 08:55 PM

Research using iodine and see if it would fit for you. It really helps some and others can't use it. But the hyper, the nodules, the goiter can all be linked to low iodine levels.

Actually, doc said no iodine. My hyperthyroid is autoimmune.

#32 hmschooling

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Posted 16 December 2011 - 09:01 PM

Could your husband homeschool the 10 and 7 year olds in the evening so that their education does not suffer?


I wish! No, he actually can't really...he works an awful shift. 12hr night shifts as an RN in the ICU...he's sleeping in the day. He's home 2 days that's he's not recovering and I can't possibly imagine leaving him to teach Singapore math. :lol:
He is still trying to work in the time to read to the kids at night and take part in different routines of our day/night. baby steps. ;)

#33 hmschooling

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Posted 16 December 2011 - 09:04 PM

I was diagnosed with autoimmune thyroid disease (Hashimotos) 7 1/2 years ago at 23. Two years later, I was diagnosed with Lupus and Fibromyalgia. So far I have had renal, hepatic, and lung involvement. Plus of course the joint pain, muscle pain, and hair loss. I'm starting to show joint deformities as well, so my rheumy at this point suspects I have an overlap of rhematoid arthritis as well.

My biggest advice would be to get a rheumatologist you trust and that LISTENS to you. I have complained about my hands bothering me for 3 years. It wasn't until this year with a new rheumalogist that x-rays showed joint erosion and he states that now I have the beginning of ulnar drift. My last rheumatologist consistently told me it was just par to having lupus. Well it wasn't, and I have irreversible joint damage and I just turned 30. Do you know if spinal issues can result as well? I have cervical spine reversal and some scoliosis. Lots of neck and back pain that is growing worse.

With small children I think it is difficult to have them grasp that something is wrong. A lot of the problem I have had is that I don't "look sick" on the outside. EXACTLY! Even hard for me to get it right now when I don't look ill. It is so frustrating to hear people say that. I have learned the hard way to just let things go. The house is a mess.....oh, well. Do what you can and let the rest go. It was so hard for me....but it really came down to prioritizing things. I have had always been one to go, go, go and do, do, do. Obviously, I am just not capable of that anymore. Just know that you will feel better....I know it probably doesn't seem like it right, but once your doctor helps find the right treatment...you will feel better.

If you have an specific questions, feel free to PM me. I'd be happy to help, if I can.

Blessings,


Thanks for sharing. My thyroid is autoimmune too....according to the doc, there is so often an overlapping "other" or two as well when it comes to autoimmune disease. Thanks for your encouragement!

#34 hmschooling

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Posted 16 December 2011 - 09:07 PM

:grouphug:
I'm starting to realize that talking to my kids about having Lupus is an on going conversation. We talked about it when I got diagnosed, and I can sense that it's time again. I don't mean in a casual way. I don't pretend that I don't have it. Our lives are affected by it on a daily basis. I can't be in the sun or really drive, so... unfortunately it's a bit of a pain for everyone sometimes.
I mean an actual talk about what Lupus is and what it means for me... and them. The kind where mom cries like a baby and everyone laughs at me. :D I also want to make sure they don't have any scary misconceptions about Lupus. They can see that I'm in pain, ill, and confused. I'm sure they've heard me talking to my husband and crying. I just want to make sure think don't think that I'm going to spontaneously combust. Sometimes my girls come up with strange ideas about things... :001_smile:

I definitely think your husband should (if he hasn't already) call a housekeeping service. For some people a messy, dirty, or chaotic home is more than they can bear. Especially with 4 kids and an ill wife, I think he ought to make this need be met. No guilt for him, everyone deserves to be cozy in their home. No guilt for you, no brainer, it's too much and sets you up to feel bad about yet another thing. Even once a month to have someone come in and do deep cleaning. Maybe a family member or friend would be willing?

I once had a massive Lupus freak out here... :001_smile: This can be a very loving and resourceful place. Have you searched old threads here? There are some good ones on homeschooling with chronic illness.

Also, I think you're awesome for teaching the kids to pull together with housework and family responsibilities. That's something good out of a bad situation in my opinion. Let your little family rally round you. I know how many things a mom can feel guilty about when she's ill. Especially when days turn to years...
I highly suggest doing a search here. Lot's of us have worked curriculum for all it's worth, to make it work while at our sickest.

:grouphug: Love to your whole family. You're not alone. :grouphug:



Your post really made me smile. So much good stuff in there :) Especially the HOUSEKEEPER part. LOL I wish we could but it's not in the budget right now...praying there's a job out there soon that'll make that possible. We want to get me into Crossfit or something like that and also move soon to be closer to doctors and support. Lots of expenses coming our way, plus a move and more reasons to get off track yet again for school.
Thanks for the advice!

#35 hmschooling

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Posted 16 December 2011 - 09:08 PM

Blech! I HATED that medicine. HATED it! I ended up switching to tapazole.

In the end I got the iodine treatment. Having an overworking heart was really scary.


It taste AWFUL doesn't it?! The bitter taste is almost like it messes with your taste buds. Lemon juice helps...like straight lemon juice and a lick of salt. All I've found to help at all.

#36 HiddenJewel

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Posted 16 December 2011 - 09:57 PM

Actually, doc said no iodine. My hyperthyroid is autoimmune.


Ah! That can be a problem.

#37 HiddenJewel

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Posted 16 December 2011 - 09:57 PM

It taste AWFUL doesn't it?! The bitter taste is almost like it messes with your taste buds. Lemon juice helps...like straight lemon juice and a lick of salt. All I've found to help at all.


I didn't make it past a couple doses!

#38 TracyR

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Posted 17 December 2011 - 12:48 AM

Actually, doc said no iodine. My hyperthyroid is autoimmune.

"Myth. Yes, iodine helps many with autoimmune diease.
Just check out the Iodine group on Yahoo. They have lots and lots of info about it."

I think I misunderstood. Didn't realize you ment RAI. That stuff is BAD news. Not only is it nuclear fall out. It also puts you at an extremely high risk of getting cancers in other parts of your body. Being that when they starve your thyroid of iodine, it not only starves your thyroid but other parts of your body that take in a high amount of Iodine such as your breasts , ovaries, prostate (if your a guy), colon, lungs, pancreas and stomach to name a few.

But the mineral, or is it a vitamin? Iodine CAN help you with your thyroid. I suggest going to this group : http://health.groups...m/group/iodine/ and read all you can about it. The owner of the board had thyroid cancer, had it taken out, three rounds of RAI only for it to still be there. They were going to to the External Beam Radiation on her and she was at a point that she knew if she went through with it it was literally going to kill her. So she began to educate herself. Found a Naturopathic doctor that actually had a clue as to how to treat thyroid and cancer problems and she is now cancer free, and her thyroid levels are 'normal'
for the first time in her life. She has become a Naturopath herself as well now.

I know that many doctors will say that you can't use Iodine when you have an AutoImmune problem ( not talking RAI here). But its not true. Some people DO have a reaction to it. But its not the Iodine but the fact they are Bromine and Flouride domminant. Once you detoxify yourself of those two elements then your body can and will utilize it like it should.

Edited by TracyR, 17 December 2011 - 03:59 PM.


#39 hsmom2011

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Posted 17 December 2011 - 01:30 AM

n/m



#40 Jean in Newcastle

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Posted 17 December 2011 - 01:38 AM

:grouphug:
I'm starting to realize that talking to my kids about having Lupus is an on going conversation.


I think of you often, Helena. I don't have Lupus, but my chronic illness has been an ongoing conversation too. We approach the fact that my kids have to pull my weight too at times as being part of a team.

#41 hmschooling

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Posted 17 December 2011 - 09:51 AM

Myth. Yes, iodine helps many with autoimmune diease.
Just check out the Iodine group on Yahoo. They have lots and lots of info about it.


He said no RAI mostly b/c there is no way to know how I'll react to it and no way to know how much of the thyroid it'll destroy. I'm more into controllable methods we can tweak and tailor! Maybe I'm chicken...but I'd rather just level it out without killing it and let God decide when it's time to burn out. I'm in no rush to go to hypo from my hyper and lose even more hair from the meds...my hyper causes enough hair loss and Synthroid is what I'd switch to..and that causes hair loss. Not my cup of tea. I have a chance of leveling out and being in remission and not needing meds...though mine is bad enough that the chance is less, but it's there.

#42 hmschooling

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Posted 17 December 2011 - 09:52 AM

I didn't make it past a couple doses!


I've found it's gotten less awful these last few days...the first day was HORRIBLE and I thought I'd die. I am sure to take it AFTER meals and not before. And take it with acidic juice. If I take it before eating something, I lose my appetite b/c it alters the taste so much. Nastiness.

#43 LG Gone Wild

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Posted 17 December 2011 - 09:53 AM

It taste AWFUL doesn't it?! The bitter taste is almost like it messes with your taste buds. Lemon juice helps...like straight lemon juice and a lick of salt. All I've found to help at all.


I tried putting the medecine in gel caps. Didn't work. I tried taking it with ice cream. Didn't work. I kept burping it up. Finally, like a naughty child, I just refused to take it.

I was also put on heart medication. The hyper part was hard to control so in the end I had my thyroid killed off.

#44 HiddenJewel

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Posted 17 December 2011 - 03:22 PM

He said no RAI mostly b/c there is no way to know how I'll react to it and no way to know how much of the thyroid it'll destroy. I'm more into controllable methods we can tweak and tailor! Maybe I'm chicken...but I'd rather just level it out without killing it and let God decide when it's time to burn out. I'm in no rush to go to hypo from my hyper and lose even more hair from the meds...my hyper causes enough hair loss and Synthroid is what I'd switch to..and that causes hair loss. Not my cup of tea. I have a chance of leveling out and being in remission and not needing meds...though mine is bad enough that the chance is less, but it's there.


I meant researching iodine as in the supplement iodine, not radioactive iodine. I've been the RAI route and really wish I had known more about my nutritional options for thyroid balancing before I did.

Synthroid is not your only option if you have to go on replacement.

#45 hmschooling

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Posted 18 December 2011 - 12:08 AM

I meant researching iodine as in the supplement iodine, not radioactive iodine. I've been the RAI route and really wish I had known more about my nutritional options for thyroid balancing before I did.

Synthroid is not your only option if you have to go on replacement.


Ah! Gotcha! I'll ask about that. I think we're going to get in with a specialist, although this doc has been fantastic and before I can even tell him what we researched and the route we'd like to take, he's already going that route. I think first thing is to QUICKLY get my thyroid levels stable, then we can talk more options. My heart was suffering greatly and it's finally calming. My insomnia and pains and all that...still working on it. No fun.

#46 eight_gregorys

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Posted 18 December 2011 - 04:33 AM

I just wanted to throw this out there. The hair loss you have may not necessarily be from your thyroid levels. Although they probably are right now, if your levels are out of whack. However, I have had more hair loss in the years since I was diagnosed with the Lupus then I ever did with the thyroid issue alone. So while thyroid levels are important, I would want to investigate the lupus as well. I only say this because for a year, with normal thyroid levels mind you, I was told that my hair loss was my thyroid. It wasn't until I had spots that were almost completely bald that the doctor I was seeing thought to look elsewhere.

Losing my hair has been really difficult. Even with "normal" levels it is not luscious and thick like it used to be. Every rheumatologist I've ever seen just shrugs their shoulders and says there isn't much that can be done. If anyone has ever tried anything that has helped with this, please share. :)

#47 hmschooling

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Posted 18 December 2011 - 09:53 AM

I just wanted to throw this out there. The hair loss you have may not necessarily be from your thyroid levels. Although they probably are right now, if your levels are out of whack. However, I have had more hair loss in the years since I was diagnosed with the Lupus then I ever did with the thyroid issue alone. So while thyroid levels are important, I would want to investigate the lupus as well. I only say this because for a year, with normal thyroid levels mind you, I was told that my hair loss was my thyroid. It wasn't until I had spots that were almost completely bald that the doctor I was seeing thought to look elsewhere.

Losing my hair has been really difficult. Even with "normal" levels it is not luscious and thick like it used to be. Every rheumatologist I've ever seen just shrugs their shoulders and says there isn't much that can be done. If anyone has ever tried anything that has helped with this, please share. :)

YIKES! As soon as thyroid levels are normal, we are delving into this other whole new world for me. I so hope my hair grows back...it was already naturally fine and thin and I already had a higher than normal forehead...now it's really bad... receding hairline and thinning all over. So sorry you had to deal with bald spots. I can't imagine!!
Thanks for letting me it could be caused by lupus as well.