Once we had an Autoimmune thread going...

[Jan Lyn]

Ladies,

 

A while back we had an autoimmunde disease thread going and there were a couple of women that had spoke up who had Sjogren's Syndrome.

 

I'm wondering if they are still here. I was definately diagnosed last spring, but just this September initiated treatment finally and seem to be getting worse in many ways, not better.

 

I've gotten through a major tweaking of our homeschool, which I usually don't do until after the holidays in that drab time of year, but feel the need to change how we hs even though I do not want to change, in order to save it as my voice pain is such a major issue as are my eyes.

 

Just curious if any Sjogren's people have pointers or ideas on how they pace themselves and keep hs working for them. I also began a blog on my chronic illness experience as I've really been ill for about 18 years now with fibro and other things prior to sjogrens. The blog is on my journey, hs and a bit of faith. Thought I'd leave the URL if anyone is interested in communicating.

 

Bless you all who carry on......I love to read when I am able as you all are so encouraging and have a wealth of ideas to share.

[Jan Lyn]

Please forgive me as I am bringing my own topic to the current page again hoping some autoimmune disease moms will be around over the week rather than the weekend.

 

Thanks!

[newbie]

I might be added , I have to see a rheumatologist to get a definitive diag. for Scleroderma.

 

Stress is really affecting whatever I have lately, so I am having to pace myself, which is hard since I am a type A plus.

 

I am trying to find a chef or cooking class to get me started on diet change and I have to start yoga again.

 

I am trying EFT tomorrow, to lower stress, hope it works. Onward and up w/the journey, just trying to walk in the light.

[Mrs. Readsalot]

Sorry I missed first post. I have been away from the board a bit. I was diagnosed with this 4 years ago but have had it longer than that. Here is a list of things I do.

My eyes are my biggest problem. I try to stay on top of them by keeping them moist and never letting them feel dry. This requires drops every hour for me. I also have tear duct plugs.

Drinking mostly water has helped me alot.(I treat myself to one cup of anti oxident rich tea a day)

Chewing sugerfree gum and sucking on suger free lifesavers helps alot with the voice problems

I have an only child so I our schedule alternates activities that require my voice with ones that don't.

Exercise - I walk 5 miles a day - this give me more energy to get through the day and also helps with my joints and keeping my weight at a healthy level.

Use a humidifier in the house in the winter (or whenever it is dry. This will also make your home feel warmer. It is amazing the difference this made in my comfort level.

Buy books on tape (the Henry ones are some of our favorite) I had to accept that I just can't read aloud as much now as I used too.

Take lots of sips of water. I always have a water bottle with me.

Please feel free to e-mail. I am so sorry you are having to deal with this. I really understand what a pain it is. I have days where I just want to feel normal again for just a day.

Karen

[Marsha]

I have just recently been diagnosed with Multiple Sclerosis.

 

I know of a woman who was diagnosed with Scleroderma and they gave her 2 months to live. Her husband was having to do everything for her, even brush her teeth. She started taking MSM-methyl sulfonyl methane.

That has been 6 years ago and she is even able to drive. We called and confirmed the story with her husband.

 

I think MSM will help other autoimmune disorders too.

I have started taking it.

[newbie]

I have just recently been diagnosed with Multiple Sclerosis.

 

I know of a woman who was diagnosed with Scleroderma and they gave her 2 months to live. Her husband was having to do everything for her, even brush her teeth. She started taking MSM-methyl sulfonyl methane.

That has been 6 years ago and she is even able to drive. We called and confirmed the story with her husband.

 

I think MSM will help other autoimmune disorders too.

I have started taking it.

Is MSM all natural, methy and methane just dont sound good to me. I am so glad to hear the doctors were wrong about her.

[Marsha]

Yes,

MSM is foun in foods. It is used with Glucosamine alot.

 

 

Here is a link with some info:

http://www.all-natural.com/msm.html

 

http://www.falconblanco.com/health/msm/faq.html

[newbie]

Thank you Marsha.:001_smile:

[Marsha]

You are welcome.

I'm very glad to be able to help.

 

:D

 

Marsha

[Ria]

I have Crohn's Disease which is another autoimmune disease. I have been in remission for the past 10 years. Luckily I responded very well to the first line drugs and haven't had to go to anything stronger. I almost died right before I was diagnosed - my intestine perforated and I had peritonitis - so I know how serious CD can be. I don't take my health for granted.

 

One thing that I'm very careful about is my stress level...I think stress can play a huge roll in autoimmune flares.

 

Ria

[eight_gregorys]

Hi, everyone.

 

I think I posted in one of the previous autoimmune threads. I have Lupus and autoimmune thyroid disease. Most days are a challenge. Some of the things that have helped with the way I feel everyday.

 

1. Gave up ALL types of processed food. Including anything sweetened with artificial sweetners. (Like Diet Soda....which was VERY hard for me.)

2. Exercise. There are days I don't want to get out of bed at all, but I have a DH who makes sure that I do....and that I get in some exercise. Pain and fatigue are my number one issues daily. Exercise always helps even when I feel like I can't do it.

3. Know when to stop or say NO. Again very difficult for me. I have the worst time saying no to others when they ask for my help, but sometimes I just have to. There have been times when I've had to leave the grocery store in the middle of shopping because I just can't go anymore. If you feel the need...just do it and don't worry about the crappy things that other people will say. Not that all people do or think this, but some do. Those that knew me before I was sick know that when I say I have to stop...I have to.

4. Avoid stress as much as possible. Stress seems to contribute to most autoimmune diseases. This goes back to not overtasking yourself and not feeling guilty if you have to say no. If this means passing the buck....do it.

 

I just want others with these issues to know that these diseases change your life. I'm 27. I certainly feel way older than I am. It took me a few years of stressing myself out and being hospitalized way too many times for me to realize a lot of these things. I simply can't do what used to be so easy sometimes.

 

I guess what I'm trying to say is keep life as simple as possible and if you need to take a step back...do it and don't care what others think about it. HTH.

 

Blessings,

 

Andrea

[newbie]

How do you impress on dh, who works like crazy and when health issues come up he buries head in sand and thinks it will go away, that you need help.

 

I cant seem to get msg across, w/o sounding like nag.:glare:

[eight_gregorys]

Newbie,

 

That is a hard one. I think one of the biggest issues you will find is making others understand that you are sick even though you don't LOOK classically sick. My DH didn't truly understand until I was hospitalized the first time. Even I didn't realize how sick I really was because I looked fine on the outside, but on the inside I was falling apart (and felt like it, too).

 

I would say educate your DH because he won't understand what is going on with you unless you implicitly tell him. It may take more than once. It took my DH a while before he understood completely.

 

While I was pregnant with DD...I slept 15 hours a day...everyday. I would just fall asleep wherever I was at. He asked my doctor what was wrong with me and she told him that I was chronically ill and pregnant and that I should sleep as much as I found necessary.

 

If you can, ask your DH to come to your doctor's appointment with you. Have the doctor, instead of you, tell him about the disease. This will probably help him see the bigger picture.

 

Blessings,

 

Andrea

[newbie]

Newbie,

 

That is a hard one. I think one of the biggest issues you will find is making others understand that you are sick even though you don't LOOK classically sick. My DH didn't truly understand until I was hospitalized the first time. Even I didn't realize how sick I really was because I looked fine on the outside, but on the inside I was falling apart (and felt like it, too).

 

I would say educate your DH because he won't understand what is going on with you unless you implicitly tell him. It may take more than once. It took my DH a while before he understood completely.

 

While I was pregnant with DD...I slept 15 hours a day...everyday. I would just fall asleep wherever I was at. He asked my doctor what was wrong with me and she told him that I was chronically ill and pregnant and that I should sleep as much as I found necessary.

 

If you can, ask your DH to come to your doctor's appointment with you. Have the doctor, instead of you, tell him about the disease. This will probably help him see the bigger picture.

 

Blessings,

 

Andrea

 

Thanks Andrea.

[Ria]

How do you impress on dh, who works like crazy and when health issues come up he buries head in sand and thinks it will go away, that you need help.

 

 

 

Jet, is there any way that your dh could go to a dr appt with you? When I was first diagnosed w/ Crohn's my dh was with me when we talked to the docs (of course, the first time we met them was when I was severely ill in the hospital...my disease was a total surprise until it nearly killed me). He went with me several times to follow-up appts, and even now talks to my docs when I have colonoscopies.

 

Maybe it would help if your dh talked to your doc?

 

Ria

[Jan Lyn]

Ladies,

Wow, I just got a minute to check back today and was shocked at all the responses. Thank you all so very much. I guess I just hit a really low point over the weekend. I had to whisper due to my voice and had to close my eyes a lot they were so painful. I began to think about how I would cope with this and continue homeschooling and really just needed to touch base with a few others.....which really helps me.

 

I know every day is not the same, so I need to keep that in mind. It's really frustrating not to be able to carry on conversation, answer the phone some days or read. We really have done a lot of tweaking of homeschool that I would never have dreamed that I would consider a few years back! But, I gain hope from others continuing in this/similar positions. We do have a good private school nearby---well practically in my backyard, but is too costly and considering what happened in sending my son to public highschool I'd like to avoid that for now. I think it can work, but just wasn't a good thing for him. My daughters SO want to remain together at home, so I am fortunate even though it feels too much some days, like one of you posted about your husband making sure you get out of bed, my daughters sure do!

 

Some times I think stress really aggravates my symptoms, even the physical stress of cleaning house in little increments, let alone emotional stress. And, besides my stretching and a bit of yoga I am not exercizing like I used to by walking our property each day. Perhaps you all have encouraged me to start. I seem to rather sit and eat as it eases the pain of sjogrens in my throat and keeps my weight on which is a battle.

 

I will certainly think on all of you as I go about pressing on with teaching here each day....and thanks again for sharing.

[newbie]

I had big scare four yrs. ago and almost died, was in hospital for three wks. He was not a good advocate, he pretty much zoned out and now when I ask questions about than, he says he does not remember.

 

I am the loud mouthed advocate in family, he is passive and quiet.

[newbie]

Btw. anyone do endoscopy, I had a GNT, that was god awful. I cannot imagine them sticking tube down throat, I do not want to be awake. Help.

[Ria]

Btw. anyone do endoscopy, I had a GNT, that was god awful. I cannot imagine them sticking tube down throat, I do not want to be awake. Help.

 

I haven't had it done, so no help there, but do ask your doc if he can prescribe something for you to calm you down beforehand. That might take the edge off your anxiety. I know it's done all the time for people getting MRIs.

 

Ria

[Jan Lyn]

Karen.....

 

I was wondering if you use a warm or cold air humidifyer in your home and if it is a large one? I have a small unit next to my bed at night, which is cool and I was told to use that as to not encourage mold growth in the home, but it is getting really uncomfortable at night. I am assuming you are using a warm one, but thought I'd ask. Also we have stopped using our wood stove for a year now, but I am wondering since it is an air tight stove, perhaps I could get an iron steamer pot and fill with water to be able to enjoy that again. My family is really upset that they miss their fires.......you know, as I sit and try to swallow some what normal and put those drops in my eyes every hour like you. Amazing what you can give up easily if it make you better, but others just do not adjust as well.........

 

Anyways, curious about that if you don't mind.

[TravelingChris]

I started homeschooling because of my Sjogren's. That was about 14 years ago. One thing that I soon learned was that I couldn't do some of the curriculums that others did because of my limitations. For example, I had to stop Sonlight because it relied a lot on read-alouds and my voice couldn't stand up to that. My arthritis is usually my worst symptom and my hands were greatly affected. That meant that any artsy-craftsy things were going to be done by someone else or by the children themselves. One very important thing I am still trying to learn is to plan to do less than I want. I tend to want to get lots of things done and if I work too much, I get extreme fatigue and often catch something. If I catch something, I get a lot sicker than healthier people. My dh complains about some things but usually he wants me to not do so much and save my energy. This year has been very hard for me stresswise and it has definitely negatively affected my health. I am hopeful for better things soon when we move.

[Mrs. Readsalot]

Karen.....

 

I was wondering if you use a warm or cold air humidifyer in your home and if it is a large one? I have a small unit next to my bed at night, which is cool and I was told to use that as to not encourage mold growth in the home, but it is getting really uncomfortable at night. I am assuming you are using a warm one, but thought I'd ask. Also we have stopped using our wood stove for a year now, but I am wondering since it is an air tight stove, perhaps I could get an iron steamer pot and fill with water to be able to enjoy that again. My family is really upset that they miss their fires.......you know, as I sit and try to swallow some what normal and put those drops in my eyes every hour like you. Amazing what you can give up easily if it make you better, but others just do not adjust as well.........

 

Anyways, curious about that if you don't mind.

Our humidifier is a large cool mist unit purchased at Sams. We clean it every week and put drops (bought a Wal-Mart) to keep mold from growing. I use ointment in my eyes at night and reapply it when I get up in the middle of the night. I also keep a bottle of drops and a bottle of water at my bedside. The stress thing is a huge factor. The more calm and relaxed I am the better I feel generally. I am considering trying Yoga to help with this.

Karen

[Jan Lyn]

Thanks so much, Karen, I will check into that and I'll try not to stress out quite so much too. :) I only do very gentle yoga but I do find that and stretching to help me, especially in the neck area which is so effected. I sip water all night long too......ugh. I had much hope for Evoxac that I began last week, but am coughing like crazy and feel as if I am drowning in the night propped up high. I just read the side effects and one seems to be increased coughing and infections. More stress, right? Trial and error I guess, along with a big heaping of trust.

[newbie]

I could just scream. I know someone stated it might take six wks. to get in w/a rheumatologist, but February is out of the question.

 

What makes them think that having an autoimmune disease and not seeing them for three mos. is going to help their sit.

 

I am at a loss, if I change docs it wont go into effect. So I am sitting here not knowing if I have scleroderma, but the doc is almost sure.

 

If my hair was not already falling out I would be pulling it. My next question is it really beneficial to go to a specialist, or should I just manage w/diet and lifestyle. I am so anti medicine anyway.

 

Help HIve.