Lupus Never Looked So Good

I posted a while ago about certain holistic treatments that have stigmas attached to them.  (here)

I wanted to point out that certain alternative treatments that people look down on have actual science behind them, and are not just placebos or hokey guess-work. 

I never mentioned meditation in that list because I sort of felt that the science behind meditation seemed flakey.  But I’m a jerk, and I was wrong.  I mean, I felt personally that meditation was a valid treatment, but I assumed that most people would assume that I was some hippie with an agenda. 

Check this shyte out though! Here, they’re saying that even the smallest amount of meditation (that’s 28 hours spread over 8 weeks! Hardly anything substantial) can actually change the structure of your brain! 

In small amounts, we’ve basically found a lot of change in the parts of the brain responsible for anxiety and depression.  With more study, I’m sure there’s more that can be affected.  But isn’t that enough to validate this as a helpful medical tool? 

For people with Chronic Illness, I think it might be.  Chronic Illness can often lead to higher levels of anxiety and depression (for obvious reasons), but it’s a self-servicing cycle!  Your anxiety and depression levels increase, your physical symptoms increase due to the emotional stress, you get more anxious and depressed, and the loop continues! 

I have Chronic Anxiety (due to PTSD) and Depression (Lupus symptom) and I have used meditation as a long term treatment.  I used “conventional” medications when I was first diagnosed and I needed immediate relief in order to continue my daily life (paxil, klonopin), and I generally keep Klonopin on hand in case of an emergency situation (i.e. meditation fails and I need to be able to calm down quickly).  But my anxiety and depression are less severe in general now and I can control them mostly with meditation and relaxation techniques. 

Here are some breathing techniques that work well:

http://www.chinese-holistic-health-exercises.com/anxiety-breathing-techniques.html

And there is also a technique that I’ve found EXTREMELY effective called Hook-ups.  I can’t find a simple description online, so here’s my best shot. 

Stand up straight.  Take your foot on your dominant side and cross it over your other foot.  (So now my right foot would be on the ground to the left of my left foor)

Put your arms out in front of you, and cross your dominant arm over your other arm.  Make your palms face each other, and clasp your hands together.

Then you want to bend your elbows so that your arms fold in to your chest, with your clasped hands resting under your chin. 

The last step is to, with your mouth closed naturally, place your tongue on the roof of your mouth. 

it shouldn’t be an uncomfortable position to be in, but if you feel like you can’t keep your balance, sit, and cross your legs (dominant over).  Then do the rest the same.  Hold that position for a few minutes, focusing on your breathing.  You should start to feel less anxious/stressed the longer you remain in that position. 

When I was young, I admired and was infatuated with tattoos.  I still am, but the difference is that back then I had a much higher disposable income.  Now, I’m pretty broke most of the time.  The genius that my mother is, she told me that if I had Lupus and got a tattoo, I could die. 

I seriously believed her for like, four years.  All along she was just brilliantly tricking me out of getting tattoos. 

I posted a little while back saying that I was having a “bad day”.  It sort of turned into a bad couple of days.  One symptom of Lupus I notoriously experience is hair loss.  I’m extraordinarily lucky because I’ve got a seriously thick head of hair on me, so the only time I’ve ever had *noticeable* bald spots was when I was younger and newly developed Lupus.  But if, during a flare, you were to part my hair, you’d see the patches missing. 

But good news for me, it seems my symptoms have mellowed, which is great.  And in addition to less severe arthritis, milder anxiety, and less digestive pain, I haven’t seen any hair on my pillow or in my clothes (not more than a few strands) in the last two days.  woohoo!

But I also want to write about Alopecia because it’s one of the more visual symptoms of Lupus, and can be one of the more emotionally distressing especially in younger girls. 

We all lose a bit of hair every day, usually 50-100 strands of hair even.  That might seem/look like a lot, but it’s totally normal and essential to healthy hair growth.  The kind of hair loss I’m talking about it excessive, pulling out clumps of hair, and is related to your immune system attacking the skin on your scalp.  That is called Alopecia Areata.  The good thing about this type of hair loss, in comparison to Androgenetic Alopecia, is that once the immune system has suppressed itself, the hair will start to grow back.  

Alopecia can manifest in Lupus patients either as a symptom, or as a side effect of Prednisone or other immunosuppresives.  Ah, the fun in heavy drugs.

I go through Lupus related blogs online from time to time, and I can’t help but make observations as to why we gather the way we do on the internet.  There are a few blogs out there that are geared toward awareness, spreading information to anyone who might need or want it, as well as attempting to familiarize the general population with our ‘invisible’ and misunderstood illness. There are a few of us on Tumblr doing just that. 

There’s also a TON of forums, blogs, websites dedicated to community support.  Bringing people with Lupus together to talk, vent, share advice etc.  I think the internet is a great and accessible resource for that need we have to know others are going through what we are going through, and to feel less alone.  But I’m also of the belief that the internet simultaneously fills that need while somehow making it greater.  And I feel that there is no replacement for actual live, in-person support.  

Live support for people with Lupus is not exactly as easy to find as, say, cancer support groups or alcoholics anonymous.  But they are out there.  And I can say from experience that the positive energy and strength found in support groups is unmatched by anything you can find on the internet. 

Here’s some information on Lupus support groups. 

Official Groups through Lupus.org

Additional Groups plus Information on starting your own group

I’ve seen a lot of shocking misinformation floating around, not just on the internet, but on television and in the mouths of my peers in relation to Lupus and what causes it.  I’ve heard a Doctor on a daily news program say that a person cannot develop Lupus.  I’ve had lovers freak out because my genetics are too risky for breeding.  I’ve had much less educated people confuse it with a type of HIV or sexually transmitted disease.  These are pretty drastic cases of misleading facts, but it is true that the cause of Lupus is a varied and blurry subject.  So, I thought it would be nice to do a run through on the truth of the matter, not just for you guys, but for my own reference points to my friends and family as well. 

Genetics:

The most common belief I have personally encountered is that Lupus is entirely genetic.  Meanwhile, although Lupus seems to *sometimes* run in families or appear in two identical twins, there has been no discovery of a gene or group of genes that is linked to Lupus.  There are plenty of people with Lupus who have no history of it in their families before or after.  There are also people with Lupus who have history of *other* autoimmune disorders in their families.  Then there’s the interesting fact that Lupus affects a greater number of people from African and Asian decent.  The theory for why this is so far is that whatever genetic make-up puts a person at risk for Lupus might also render the person more resistant to Malaria.  Still, the genetic research for Lupus has a long way to go.

Lady-bits:

Lupus affects both men and women, but it is found FAR more often in females.  There is also reason to believe that estrogen directly affects Lupus, as many women suffer an increase in symptoms during times where estrogen production is high (pregnancy, or the week before a period).  Women also tend to experience Lupus symptoms for the first time around the onset of puberty.  There is a lot to be said about the way estrogen affects our immune systems as well, for instance:

• Estrogen production can make B cells live longer than they should, and as those cells are responsible for killing germs, perhaps estrogen production can trigger this immune system “overreaction”.
• Estrogen production can cause your Cytokines (molecules that deliver messages to your immune system) to kick start your defense system when they are not needed.
• It is possible that Estrogen might prolong apoptosis, the process in which dead cells are disposed of.  The longer dead cells stay in your system, the longer your immune system will stay in action.

We know Estrogen greatly affects Lupus, and may be a contributing factor in autoimmune function, but we have yet to pinpoint it’s full role. 

Your Environment:

Yes, there is cause to believe that Lupus might be-at least in some cases-brought on by harsh, extreme environmental factors.  Maybe these factors will only trigger Lupus in someone who is already genetically susceptible, or maybe Lupus is something that can manifest in a person due to these triggers.  It’s not 100%.  Some recorded triggers are:

• ultraviolet exposure
• Sulfa drugs that increase sun-sensitivity
• tetracycline drugs
• penicillin or other antibiotic drugs
• a bad infection
• severe emotional stress (trauma)
• severe physical stress (accident, surgery, pregnancy)

There is little official information as to whether or not Lupus can be triggered by stress.  I can’t imagine how that is debatable, as if you ask anyone living with Lupus they will tell you that symptoms and stress have a direct relationship.  Maybe it just hasn’t been documented enough.  I don’t know.  

I have a whole ton of faith in the idea that once we pinpoint the cause (or causes) of Lupus, that will lead us directly to our cure (or at the very least a treatment that actually makes sense).  But I also have a suspicion that drugs have a lot more to do with causing Lupus than certain people with lots of money would like us to find out.  And if my totally extreme conspiracy theory is correct, then we won’t be finding the cause until we have more money than them!  So like I say, donate.  Ya dig?

I’ve been reading a lot about Gluten intolerance lately, because, well…

Hold up.  Let’s start over.

When I was 14, along with being diagnosed with Lupus, Rheumatoid Arthritis, Raynaud’s Phenomenon (oo00oo0o0o0o!), I was also diagnosed with a Gluten Intolerance.  My doctor (as I mentioned before, she is a brilliant woman and I am so grateful) decided to test me for food allergies after my diagnosis to kick start her plan to turn my life and my health around.  I came back as having some mild allergies to certain nuts, and other things here and there.  But I had a strong allergic reaction to Gluten. 

There is a disease, Celiac Sprue, that is a serious disease that involves a severe deteriation of the digestive tract as a reaction to Gluten consumption.  It is hereditary, and is not just a food allergy or symptom of something else.  I did NOT have Celiac.  I have known others who were diagnosed with Celiac and went through unnecessary worry and treatment when what they really had was a Gluten intolerance.  Point being, Gluten allergies and Celiac are two very misunderstood and confused conditions.  

Hence this post.

Basically, my first point is do not be afraid to question your doctor (as always) when it comes to frequently misdiagnosed ailments such as Celiac and Gluten Intolerance.  Stand up for yourself, it is the information age and Doctors are just people. 

Since I was lucky enough to have a questioning doctor, she looked into the differences between Celiac and Gluten Intolerance and we came up with a treatment plan.  With Celiac, consuming Gluten products adds more and more permanent damage to your digestive tract.  There’s no miracle pill.  There’s no cure.  But an intolerance is just that.  So we decided to play with my diet and build up a tolerance. 

For a few years, I detoxed.  I cut all gluten from my diet entirely.  I was in high school at the time and believe me, it was the Pitts, in combination with all my other new medical restrictions.  Then after a few years, once my health had stabilized (Lupus symptoms subsided, and my digestive tract was no longer on fire), we introduced Gluten slowly back into my diet.  First, I would have a small portion every week.  Maybe a sandwich or something.  Then a few months down the line, I’d have it twice a week.  A few months later, three times.  Eventually, after a long while of this I was eating Gluten normally.  And we retested my allergies and Gluten wasn’t even on the list.  I haven’t had a problem (related to the allergy) in over four years.

*This will NOT work for patients of Celiac Disease*

I bring this up because a friend of mine just told me she was retested by a new doctor who questioned her old diagnosis for Celiac.  She was diagnosed almost eight years ago.  And now she has learned that she doesn’t have Celiac at all, but a Gluten Intolerance.  On one hand, this is a huge relief.  But…she is frustrated with all the worry she has wasted over the last years. 

So this is what inspired me to sit down and read up a little bit on Lupus, Gluten Intolerance and Celiac and see if things have progressed at all.

And then I see this article.  The article is about new research showing that some cases of SLE diagnosis might be the cause of a Gluten Intolerance.  Thus explaining the rare cases where someone is diagnosed with Lupus and then are retested and it’s miraculously gone.  Honestly this is great research because it allows some new insight into new approaches to treating Lupus and other chronic illness by testing to see if allergens are aggravating your symptoms.  Honestly, it’s something I’ve been saying from the beginning but it’s about time the rest of medical science caught up, don’t you think? 

That being said, I wanted to put this out there before this kind of news starts to circulate.  This news does not mean that anyone with Lupus can now just go ahead and chalk it up to a Gluten Intolerance.  We don’t want to hear people saying things like,

“Oh, you know what, you just need to cut Gluten out of your diet, that’s probably what’s causing all of this.”

To those who may say this in the future I’d like to reply, “Go to Hell, misinformed hippies.”

SLE is still a disease, and while researching Gluten Intolerance and the effect it has on symptoms, diagnosis and treatment is very enlightening and important, I am weary of this being an excuse for the medical community to dismiss us. 

fuckyeahmedicalstuff:

What is Raynaud’s phenomenon?

Raynaud’s phenomenon (RP) is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature (cold or hot) or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. Initially, the digit(s) involved turn white because of the diminished blood supply. The digit(s) then turn blue because of prolonged lack of oxygen. Finally, the blood vessels reopen, causing a local “flushing” phenomenon, which turns the digit(s) red. This three-phase color sequence (white to blue to red), most often upon exposure to cold temperature, is characteristic of RP.

 

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I am reblogging this mainly because it is a common symptom of SLE, and one that I have been diagnosed with.  Also, I reblog this because I sort of think it’s awesome that I have something that is actually called a “phenomenon”, and I always use my *mysterious* voice when I mention it to anyone. 

OOOOoooOoooOoOoOooOoooooOOOOooo…..It looks like I’ve got the PhEnOmEnOn!!!!! ::dun dun duuuuuun::