Fuck you, lupus!!

ARRRRGGGGGG!!! Just have to vent! I have lupus, and part of it is that I'm sensitive to sunlight. As in, I get itchy rashes if I'm in the sun without heavy sunscreen. Anyway, I forgot to put sunscreen on yesterday and was outside for about 3 hrs. doing gardening.....and now my shoulders and upper back are covered in itchy little blister bumps and they're driving me fucking MAD!!! I'm trying not to scratch. It's like stinging nettles and fire ants. 😛 😱 😢

My brother passed away 5 years ago from Lupus.

You should be more careful

~hugs~ I'm sorry to hear that, Eleventh. 😢

Mine isn't systemic, yet. I have discoid lupus. I've been focusing on finding an alternative way of getting the immune system to stop attacking self, because the current, western medicine way of treating lupus isn't really a treatment, and it does nothing to stop anything. Immune suppressing medication is counter productive, IMO, and I hate the side effects (it's been almost 2 yrs since I last took mine). It's been a little over 3 yrs since I was diagnosed. It took 7 yrs to get a diagnosis.

Me right now.....

All that sunscreen... and you in cali.


Hope you take vitamin D. 🙂


Take an aspirin, and be more careful... hope you

feel better, moon.

Posted by starlover
((((Moon)))))

That is sad to hear 😢

Have you tried going to a natropath or even a chinese herbalist...both could help?

Haven't tried those, yet. I'm currently trying reiki.

Posted by Montgomery
All that sunscreen... and you in cali.


Hope you take vitamin D. 🙂


Take an aspirin, and be more careful... hope you

feel better, moon.

I know....the land of perpetual sunshine, and I'm allergic to it. 😛

I do take vit D but need to up the dose, maybe.

Posted by starlover

Posted by MoonArtist

Posted by starlover
((((Moon)))))

That is sad to hear 😢

Have you tried going to a natropath or even a chinese herbalist...both could help?

Haven't tried those, yet. I'm currently trying reiki.

Chinese herbs can work like magic Moon....🙂

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It's worth a shot, and certainly safer than what the pharmaceuticals want us to take.

That they do....and why I'm pissing my dr. off by not taking them. lol

Thanks

Posted by starlover
Take a read of this Moon...if you scroll down there is a section on fish oils etc...I also did a bit of *channeling* for you and going to see an acupuncturist came to me..they may also help with remedies, herbs etc

http://www.naturallyproven.com/lupus-symptoms-and-natural-treatments/<BR>

(((hugs)))

Ok, reading that now. Ooo, thanks for the channeling! Hmmmm.....I've always dismissed acupuncture because of the needles (I know it works...I'm just a needle-phobe). Is acupressure as good?

I'm sorry it's so. Maybe one day there will be a cure. 😢. But you've endured and that takes a lot of strength 🙂

Sure hope the doctor doesn't want to put you on prednisone that stuff is bad sh**. Go with the natural remedies first, big pharma are always pushing their f**king drugs it is more about money than finding a cure.

They use immune suppressing medications for all autoimmune diseases. First the mild stuff, like Plaquinel, and eventually on to higher doses and heavier meds. Eventually they put people on chemo drugs. This is why I want to find a better way to treat, manage and reverse it. They aren't looking at it from the right side, they aren't looking at it as a whole. When I got pregnant with my first child, that's when the lupus started (wasn't diagnosed then, though). Stress is a huge trigger for a flare. So it stands to reason that stress management and finding a way to get the immune system to go back to it's default normal setting is the thing that should be looked into.

Interesting

Posted by starlover

Posted by MoonArtist

Posted by starlover
Take a read of this Moon...if you scroll down there is a section on fish oils etc...I also did a bit of *channeling* for you and going to see an acupuncturist came to me..they may also help with remedies, herbs etc

http://www.naturallyproven.com/lupus-symptoms-and-natural-treatments/<BR>

(((hugs)))

Ok, reading that now. Ooo, thanks for the channeling! Hmmmm.....I've always dismissed acupuncture because of the needles (I know it works...I'm just a needle-phobe). Is acupressure as good?

Moon, the needles are so fine, you won't even feel them.....my ex has a huge needle phobia but he had it done with no prob. Acupressure could help too. I keep getting that you need detoxing and to cleanse the energy in your body

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Well, if I can go through 2 c sections, I should be able to handle tiny needles, so long as I don't have to look at them. lol

Any ideas on detoxing and energy cleansing?

Posted by starlover


I only go to docs when i need a diagnosis (even then, not that often). The last time i saw mine she was worried cos she found a lump in my breast..i treated it with Frankincense oil and it went away. They like to put the fear of God into us, because they make money out of it...ugh. One thing i cannot tolerate is when they say *it will get worse*. How the fuck do they know. I have gotten better results through natural healing and yoga and not taken any meds the recommend

The saying... as a man thinks, so he is.

I think there's a lot of truth to it.

:/

You need to take care of yourself girl, after all we have nobody else who will run around mafia town tearing shit up or burning it down. Really hope you feel better soon.

Posted by starlover
Close your eyes and dont look Moonie .....yes c-sections can be tough on the body so you will sail through the skinny needles 🙂

Will do some meditating on the detoxing but do chakra balance/cleanse at least once a week......loads of them on YouTube to guide you through the process.

Do you eat parsley at all.....that just came to me


Back later xxxx

I just stumbled on a good chakra cleanse vid the other day. Funny timing!

No, other than cooking with it now and then, I don't go out of my way to eat much parsley. Why?

Posted by Montgomery

Posted by starlover


I only go to docs when i need a diagnosis (even then, not that often). The last time i saw mine she was worried cos she found a lump in my breast..i treated it with Frankincense oil and it went away. They like to put the fear of God into us, because they make money out of it...ugh. One thing i cannot tolerate is when they say *it will get worse*. How the fuck do they know. I have gotten better results through natural healing and yoga and not taken any meds the recommend

The saying... as a man thinks, so he is.

I think there's a lot of truth to it.

:/

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Yeah, they do love to give the worse case scenario. Or, they completely ignore what you tell them and then get pissy and condescending when you try to get help.

Posted by kane48txboy
You need to take care of yourself girl, after all we have nobody else who will run around mafia town tearing shit up or burning it down. Really hope you feel better soon.

Yes I do, and thank you. Don't forget the nudity! lol

Posted by Rabbit

Posted by clooneyyears
i thought this was dxp drama... don't we have a user named lupus or sth?

Yeah at first I thought she meant that Libra girl Illalupus.

I was like WTF Moonie is getting mean.

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lol NOOOO! Not dxp drama.....my body hates me drama....

Posted by Rabbit
MOONARTIST....YOU NEED TO DRINK MORE FRUIT JUICE:

I think you're right! That one is perfect 🙂

Posted by Rambunctious76
@MoonArtist,

I'd like to know what the early stage symptoms of lupus are. Just wondering cos over the last few years my skin has gotten allergic to sunlight too.

8 years ago I was diagnosed with rosacea - but that was when it was just my face...now it seems it's spread to my whole upper body...smh

While it was taking 7 yrs before I was diagnosed, the symptoms were so oddly disconnected that no one figured it out, not even myself. I was losing more hair than usual, had weird, random rashes that would crop up, but they were confirmed to not be fungal, bacterial, or anything else, and the drs. didn't know what to say about it, I would get "sick" alot, like I had a mild flu with a raised temp and muscle aches, but no one else would get "sick", fatigue.

Finally, it was the famous butterfly mask that caught a friend's attention (she's a nurse practitioner). I thought it was rosacea, and she asked if I had noticed it. I told her my thoughts. She had her dermatologist hubby look at it, and he said, "that's not rosacea". Then she wanted me to get some blood tests done. All total, about 25 different ones. Long story short, and a couple of stubborn, uncooperative drs. later, my ANA test came back with a titer ratio of 1:1280, and the normal range is 1:80 or less. Got sent to a rheumatologist who ordered some more tests, and she diagnosed me with lupus.

Stress triggers a flare. Stress can be emotional, working out too hard, getting sick. A flare can cause rashes, fatigue, muscle pain, hearing sensitivity, muscle weakness and trembling, temperature spikes, joint pain, hives, etc. Rashes can be small, isolated, or in clusters. They can resemble crusts like cold sores, cigarette burns, ringworm, psoriasis, etc.

Google what tests to get done. Also, I was vit. D deficient when they ran those tests.

Posted by MoonArtist

Posted by kane48txboy
You need to take care of yourself girl, after all we have nobody else who will run around mafia town tearing shit up or burning it down. Really hope you feel better soon.

Yes I do, and thank you. Don't forget the nudity! lol

click to expand

Yes Ma'ma I can't...........

Posted by kane48txboy

Posted by MoonArtist

Posted by kane48txboy
You need to take care of yourself girl, after all we have nobody else who will run around mafia town tearing shit up or burning it down. Really hope you feel better soon.

Yes I do, and thank you. Don't forget the nudity! lol

Yes Ma'ma I can't...........

click to expand

I'm willing to be you haven't found the boob thread, yet. 😉

*bet

Posted by starlover
I think parsley may good for detoxing.......I just get things coming in and then usually research after

The docs won't tell you this cos they just want to stuff everyone full of meds but you are probably best to change your lifestyle for a while. Look at your diet.l am guessing no dairy but again will check that

The other thing that came to mind is juicing.....do you have a machine? Maybe do this with fruit and veg as much as you can. Drink loads of Lemon water and take measures to reduce stress. I find deep breathing often and medition work well

I decided to do the anti cancer diet after my family passed with it. I was having severe pains in the solar plexus and sacra Chaka areas and my doc said I had a hernia....I thought 'no I don't ' lol.......looked at my diet.....took more exrcise, drank the water and now no symptoms. I also do lots of affirmations which seem to work

It takes some discipline but worth it. I now live like it all the time

Posted by starlover
Try testing the ph levels in your body too....if the body is too acidic, disease will thrive ... If balanced it won't. Sadly booze is very acidic so not a good ideas to drink too much when you are sick. I can let you know where to get the test strips if you want to do this

Btw I am a complimentary health practitioner so love all this stuff

Health is wealth


🙂

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That makes sense about parsley. That would be a good one to add to a veggie smoothie/drink. No, I don't have a juicer, but I have a ninja blender (pulverizes anything you put in it). Does it have to have the pulp and fiber removed, like with a juicer?

I hope I don't have to go no dairy. I don't drink milk (hate it!), but I love yogurt, and cheese (more so the soft goat cheeses than the harder, aged cheses). I also love eggs.

I've been thinking about taking turmeric in big doses, and ginger, too. Both are anti-inflammatory.

I'm so glad you went on an anti cancer diet! I'm sorry about your family, though. That's heartbreaking. 😢

How does one test body ph? And I know alcohol is acidic. I don't drink it often or much, because sometimes, depending on the type of drink, it gives me acid reflux.

I didn't know you were a complimentary health practitioner! That's awesome! 😄
And thank you

Posted by starlover
www.walmart.com/ip/Phresh-Products-Ph-Test-Strips-80-count/29356220

??

That answers my question on ph 😄

I feel for you. My mom has it and she goes through the same thing, she also lost some of her hair, but she is just fine, still very healthy and happy. She was always very on top of it, follows the doctors orders very well, she has had it since HS and she is about 57 now. I think with proper care you will do great, good luck 🙂

I would look into holistic healing tho, that is more my speed, Id hate all those chemicals, if you can find a holistic doc even better.

Posted by bkbella86
I feel for you. My mom has it and she goes through the same thing, she also lost some of her hair, but she is just fine, still very healthy and happy. She was always very on top of it, follows the doctors orders very well, she has had it since HS and she is about 57 now. I think with proper care you will do great, good luck 🙂

Posted by bkbella86
I would look into holistic healing tho, that is more my speed, Id hate all those chemicals, if you can find a holistic doc even better.

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I'm so glad your mom is doing well with her's. I'm in agreement with you on the holistic approach. I tried the medical approach and it wasn't a match for me, it only created a different source of problems.

I'm trying reiki. The gal who does the work says that her reiki master (who taught her) is in her 60's and has lupus, but through reiki she has been symptom free for over 20 yrs. That's my goal! To have this under control.

Posted by starlover
Aaaarrghhh ......... Typed a long post and lost it

Back later. 🙂

GAH! I hate when that happens! I'll be back later. I'm going in for a steroid shot. The rash has spread, my ears itch, it's up to my chin and down my whole torso....sort of like hives. The last time I had full body hives without a known reason for it (just before I was diagnosed with lupus), a steroid shot was the only thing that helped.

Posted by Reincarnation

Posted by MoonArtist
ARRRRGGGGGG!!! Just have to vent! I have lupus, and part of it is that I'm sensitive to sunlight. As in, I get itchy rashes if I'm in the sun without heavy sunscreen. Anyway, I forgot to put sunscreen on yesterday and was outside for about 3 hrs. doing gardening.....and now my shoulders and upper back are covered in itchy little blister bumps and they're driving me fucking MAD!!! I'm trying not to scratch. It's like stinging nettles and fire ants. 😛 😱 😢

Heal the microvilli with butyric acid and glutamine.

Avoid gluten and phytic acid.

Manage with astaxanthin and prednisone.

click to expand

Butyric acid is found in stomach for digestion, and also in dairy, and is what gives spoiled milk and vomit the nasty odor. How does that one heal the microvilli? Glutamine is an amino acid and essential to our body, so that I can understand. I do have some, I think, but haven't taken it in a long time.

I sort of mostly avoid gluten....and then I fall off the wagon and cave to eating something with wheat. I didn't realize phytic acid was in grains (especially wheat). ok, this just confirms I need to avoid the crap out of wheat products.

Urgent care gave me oral decadron and vein injected solu-medrol, plus a prescription for prednisone. I'm already not glowing fire engine red with leopard spots (thank goodness! The itching was spreading and getting bad!) Had a 99.8 temp while there, too. Oh the inflammation!....it was rampant.

Posted by Reincarnation

Posted by MoonArtist

Posted by Reincarnation

Posted by MoonArtist
ARRRRGGGGGG!!! Just have to vent! I have lupus, and part of it is that I'm sensitive to sunlight. As in, I get itchy rashes if I'm in the sun without heavy sunscreen. Anyway, I forgot to put sunscreen on yesterday and was outside for about 3 hrs. doing gardening.....and now my shoulders and upper back are covered in itchy little blister bumps and they're driving me fucking MAD!!! I'm trying not to scratch. It's like stinging nettles and fire ants. 😛 😱 😢

Heal the microvilli with butyric acid and glutamine.

Avoid gluten and phytic acid.

Manage with astaxanthin and prednisone.

Butyric acid is found in stomach for digestion, and also in dairy, and is what gives spoiled milk and vomit the nasty odor. How does that one heal the microvilli? Glutamine is an amino acid and essential to our body, so that I can understand. I do have some, I think, but haven't taken it in a long time.

I sort of mostly avoid gluten....and then I fall off the wagon and cave to eating something with wheat. I didn't realize phytic acid was in grains (especially wheat). ok, this just confirms I need to avoid the crap out of wheat products.

Urgent care gave me oral decadron and vein injected solu-medrol, plus a prescription for prednisone. I'm already not glowing fire engine red with leopard spots (thank goodness! The itching was spreading and getting bad!) Had a 99.8 temp while there, too. Oh the inflammation!....it was rampant.

Glutamine and butyric acid are preferentially used by the epithelial cells of the gut for energy.

80% of your immune system is located in the gut. Healing it will have an adaptive effect on the inflammation.

Ghee has butyric acid.

click to expand

I didn't know that about ghee. I'll pick some up at Trader Joes.....plus research what else is high in it. Thanks! I learned some new and interesting stuff. 😄

Posted by Reincarnation

Posted by starlover
Would vitamin c be more suitable than I wonder? That seems to be more gentle maybe?

C is fine.

Orthomolecular amounts recommended by Linus Pauling are mostly beneficial.

Some ascorbic acid is derived from corn, which isn't always clean. It can also increase iron absorption - which leads to oxidation.

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In other words, find out the source, and go for high quality.

Hope you're feeling better Moon.

Thanks, PR. The steroids are working. I also found out today that you're not supposed to be in sunlight while taking antibiotics. Lupus plus the moxi made for a whamo when I was in the sun. DOH

So are you born with Lupis? how does it originate in a person's body? Sorry I've never heard of it till now.

Posted by starlover
Thanks munchykin.....I like to help others ..... Drugs are so damaging to the body and during my studies I learned that for every synthetic drug there is a natural one to match it. It works very well if you adapt to that way of life 🙂


(((Moon))) so sorry for what you are going through. It sounds so fough for you. If you can get the juicer machine and start having them every day along with lots of purified water, it will help. As you know any drugs you take will damage the immune system which is what you are trying to heal. Vit C, Garlic, Echinacea, Aloe Vera juice are all good as is meditation. I guess it comes down to a drastic life change. Xxx

Ack! I missed this post somehow! I agree, the drugs used for treating this are nasty. That's why I stopped taking them and decided to find other ways to manage this. I love echinacea! I try to use it when someone around me is sick....and I load up on it!

Posted by Rabbit

Posted by Reincarnation

Posted by starlover
Thanks munchykin.....I like to help others ..... Drugs are so damaging to the body and during my studies I learned that for every synthetic drug there is a natural one to match it. It works very well if you adapt to that way of life 🙂


(((Moon))) so sorry for what you are going through. It sounds so fough for you. If you can get the juicer machine and start having them every day along with lots of purified water, it will help. As you know any drugs you take will damage the immune system which is what you are trying to heal. Vit C, Garlic, Echinacea, Aloe Vera juice are all good as is meditation. I guess it comes down to a drastic life change. Xxx

Echinacea is powerful.

It would strengthen the immune system and increase the inflammatory response - making the condition worse.

Garlic falls in the same camp.

Agreed on the echinacea.

When I tried taking it, I would break out in canker sores.

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I've never had a bad reaction with garlic or echinacea.

Posted by Stihl46
So are you born with Lupis? how does it originate in a person's body? Sorry I've never heard of it till now.

It's an autoimmune disorder, which means the person's immune system goes nuts and attacks self (healthy, human cells in the body: skin, heart, organs, etc.), as well as functioning to protect against viruses, etc. Lupus is just one of many autoimmune disorders, and the way western medicine treats it, they act as if each autoimmune disorder is a different disease. They're all part of the same big beast, they just attack different things. Lupus can be whole body attack. Rheumatoid arthritis attacks joints, Chrone's attacks the entire GI tract, from espophogus to the intestines, MS attacks muscles.

Currently no one knows why or how it happens, but there's big evidence that it is genetic. My dad's side of the family, both of my uncles, my aunt, and 2 cousins have an autoimmune disorder. Technically, I'm born with it. It first started, lightly, when I got pregnant with my first child. Stress is a HUGE HUGE trigger for it. Stress can be an illness, surgery, pregnancy, excessive exercise or exertion, emotional stress, etc.

Posted by Rabbit
Canker sores are an autoimmune response. Lupus is an autoimmune disorder.

The last thing you want is to kick your immune system into overdrive if you have an autoimmune disorder.

Unless you are keen to have excess white blood cells feasting upon your own body.

I thought canker sores were from some cold virus.

Thanks for the explanation, so you never know you would have it until something triggers it, you would have to look through your family history to get an idea if you may have it.

Posted by Stihl46
Thanks for the explanation, so you never know you would have it until something triggers it, you would have to look through your family history to get an idea if you may have it.

Exactly. And if family history proves you have higher odds than others, that's when one should do all in their power to decrease stress and eat low inflammatory foods. Sort of like if you know cancer is a trend in a family.....live to prevent.

Posted by MoonArtist

Posted by Rabbit
Canker sores are an autoimmune response. Lupus is an autoimmune disorder.

The last thing you want is to kick your immune system into overdrive if you have an autoimmune disorder.

Unless you are keen to have excess white blood cells feasting upon your own body.

I thought canker sores were from some cold virus.

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Herpes simplex aka cold sores I get them occasionally they are triggered by stress.

Posted by MoonArtist

Posted by Stihl46
Thanks for the explanation, so you never know you would have it until something triggers it, you would have to look through your family history to get an idea if you may have it.

Exactly. And if family history proves you have higher odds than others, that's when one should do all in their power to decrease stress and eat low inflammatory foods. Sort of like if you know cancer is a trend in a family.....live to prevent.

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It is why I finally walked away from the job I had the stress was getting beyond my limits. I have changed my diet I don't eat sh** food anymore I drink gallons of water. Crab men are known to be a little portly I was one of them not anymore. Diabetes is in my moms side of the family.

Posted by Rabbit

Posted by MoonArtist

Posted by Rabbit
Canker sores are an autoimmune response. Lupus is an autoimmune disorder.

The last thing you want is to kick your immune system into overdrive if you have an autoimmune disorder.

Unless you are keen to have excess white blood cells feasting upon your own body.

I thought canker sores were from some cold virus.

Cold sores and canker sores are totally different things. Canker sores usually result from an injury to the mouth tissue. The immune system begins attacking the tissue.

Cold sores occur outside the mouth and are viral.

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Cold sores are basically an STI. I've never had them. I didn't realize canker sores were from the body attacking the sore. Basically everyone has had an immune attack on self, then.

Posted by Rabbit
Mine were triggered by the sodium laurel sulfate in toothpaste.

SLS is a detergent used to create foaming action. It's also used in shampoo and dish soap.

As you know detergents allow oil and water to mix...the SLS was actually minutely breaking down the fatty acids in my mouth tissue, causing my immune system to attack the tissue.

For a long time I brushed with just baking soda and Listerine.

I had no idea! I've gotten canker sores on rare occasions, but usually when I was fighting something, and that was the first sign of impending doom. I think if I had them because of toothpaste I would have them more often. It's pretty rare for me to get them. Now a lupus rash in the mouth....I do get that more often, and they're different than canker sores. Usually on tongue or roof of mouth. Also in nostrils. Only connected to a flare.

Posted by Rabbit
Yeah. But some people get severe cases. I had a dime sized sore once.

HOLY SHIT!! That's huge! Mine were always....rice grain sized or smaller.