All my spoons are in all the right places, if you know what I'm talkin' about...

 

Mother and Daughter fight Lupus as a team

Fighting both discoid and systemic lupus, they use the support from their church congregation and family to keep their spirits positive.

Lucky With Doctors

So I realized recently, thanks to the recent heart monitor and diagnosis, that disregarding the first year of my illness, I have been extraordinarily lucky when it comes to doctors.  I am so grateful to these people and all the work they have done to be amazing at their jobs, really.

Yes, the first year I had terrible luck with a shitty drug pushing Rheumatologist and an ignorant Dermatologist, both of who gave me terrifying and blatantly incorrect diagnosis.  But since then?

When I was 14 I found the woman who saved my life.  She diagnosed me instantly, treated me without heavy drugs, taught me about my illness as she was treating me. She brought me back from an utterly dismal state.  When I moved out of state several months ago, she cried.  I mean, we’d been together 11 years in our doctor-patient relationship but still.  No one expects their doctor to cry saying goodbye to them.  

She introduced me to an incredible team of people.  A Chiropractor, Acupuncturist, Physical Therapist, and all these people who all had so many different angles and perspectives that they looked at my illness from.  The Chiropractor helped repair some of the damage that stress had done to my body during diagnosis.  The Acupuncturist gave me an herbal tea that rapidly repaired my highly dysfunctional menstrual cycle and was the first person to notice that only the left side of my skin was being affected by lesions, a pattern that linked eerily to my neurological symptoms.  The Physical Therapist helped me learn how to continue in my exercise and dance in the least harmful way possible, to live my once active life without aggravating my symptoms.  All of them wonderful people.

Then I moved to South Carolina and, albeit after a long procrastination period, I finally met with a cardiologist.  And he was…So gung-ho and amazing.  After all the time I spent seeing cardiologists in ER’s and confiding in my family and hearing about how it’s all being caused by anxiety…speaking to this man was a huge relief.  He listened to my list of symptoms and didn’t skip a beat.  He had a plan of action, a few hypothesis’, and more than a few encouraging words.  He set me up with the most thorough of tests without even suggesting that it could be in my head.  Upon returning for results, the first words out of his mouth were, “Hey, Let’s talk about this, but first I want to say that none of this has been in your head.  I see it, and I see why the doctors before me let it past them.”  

I feel so overwhelmed by these people and their goodness.  Their intelligence.  Their ability to have so much personalized empathy after hundreds of sick people crossing their desks.  

And I guess I just really hope that this is something you guys have some stories to share over.  What doctors have you had that are completely inspiring and make you feel safe and taken care of?  What doctors have you completely failed with or regretted?

Some Changes to my Blog

I’ve recently gained several new followers (Hey y’all!  You’re the best!)  And so I just wanted to reintroduce myself and also I just wanted to point out some recent changes to this blog that I thought you all should check out!  If you look to the left sidebar on my page you will see that I’ve added several links: one is to a Lupus FAQ, and one is to a page I made dedicated to keeping track of all the most useful and directly Lupus-related posts I have made here.  I’ve also added a link to my new YouTube channel, which I have been and will continue to be updating regularly over the coming months, so please subscribe if you can!  You will also notice that I have added a “Register to Vote” application on my homepage.  Your vote directly affects your future health care decisions so PLEASE make sure you are registered!

If any of you have suggestions for the FAQ, or questions/concerns/topics you think I ought to cover either here or on YouTube please do not hesitate to shoot me a message and I will definitely always respond.

But as a quick “hello”, my name is Diana, and I live with SLE, RA, Raynaud’s and Generalized Anxiety Disorder (I am officially diagnosed with PTSD, but have sort of self un-diagnosed.  I truly believe that I no longer fit the description and that, while my GAD is the result of trauma, it stands on it’s own now).  I believe in the age of information, of patient education and safety, and I firmly believe that so much of our health and well being as chronically ill individuals can be regulated by natural means and healthy living*.  I also love Doctor Who, the internet, Coheed and Cambria, slam poetry and so many other things that you will often see pop up here!

Please send me questions anytime, or if you feel I have misrepresented any information feel free to correct me!  I’m also available if you are in need of some external emotional support, especially regarding your illness.  Please do not hesitate!

Thank you all for reading/watching and I hope you are feeling so well today!  It’s so good to meet you all!

 

*((I do not, and will not ever advocate for Homeopathy, or any other baseless and dangerous method of “alternative medicine”, the natural remedies and life changes I refer to in this blog will all have evidence and support for their effectiveness behind them.  Please do not replace medications with natural methods without proper research and a discussion with your doctor!))

I always hear and read these stories about people with Lupus who get all of these amazing charity events thrown for them and shit

And I’m like, hey y’all.  What the crap?  Like I saw this one girl get her whole room remodeled on some HG show and, and some girl got some ridiculous Disney experience from the Make-A-Wish Foundation.  The *Make a Wish Foundation*??? Really?  

I guess this is weird to me for two reasons:

One reason is that I have Lupus, so associating it with the MaWF seems odd to me because my perception of the illness is distorted by being so affected by it.  In other words my brain is thinking, “psh, well I’m just over here dealing with it and working my butt off to do so, why is everyone freaking out over this random girl’s Discoid Lupus with no organ involvement??”  That would be my jaded opinion.

The second reason is that I’m secretly insanely jealous and am like, “UH EXCUSE ME HGTV COULD YOU PLEASE COME GIVE ME THINGS, OTHER PEOPLE HAVE LUPUS YOU KNOW.”

But this got me thinking, and I realized the reason that people in adulthood don’t qualify for the Make-A-Wish-Foundation.   

It’s because of shit like this:  If I were approached by the Make-A-Wish people right now and they were like, “oh we’re so sorry about your Lupus and shit, what’s your wish?  We will make it come true!”  

I’d have to answer with something so adult-ish and depressing like, “Oh if you could just take whatever money you were going to spend on something cool and just put it towards my student loans please?” Or, “Well, no thanks on the Disney trip but I would really love a weekend at the spa.”

Like, kids ask for cool stuff that makes for inspiring stories and heartwarming photo-ops.  Adults, we have such depressing needs.

Sex Is Seriously Good For Your Health

As sort of a supplement to my latest video [see: HERE] I thought this would be a good follow-up article.  Sex is demonstrably a life-improving exercise AS LONG as it is done safely and consensual.  

The risks involved in sex with a chronically ill individual DO NOT contradict the enormous health benefits that we can unlock by having healthy sex lives!  Done right, the endorphins can help act as a pain killer, and the activity can boost your immune system activity and your metabolism as well as encouraging your self-esteem and overall emotional health.   

((The definition of safe sex varies from person to person but generally involves communicating with your partner(s) and adhering to their boundaries.  Are both parties unattached and just looking to hook up or explore a friends-with-benefits situation?  Then one or more methods of protection are best (barrier + hormone).  Are you in a committed monogamous relationship in which both of you have been recently tested but still don’t want kids?  Then go ahead and ditch the barrier, single method should do you fine.  Just be honest with each other and don’t expect your partner to read your mind!))

New video about Sex and Lupus, particularly answering the often asked question: Is Lupus sexually transmitted?

I don’t care if we are best friends, or if you are family.  If you ever say this to me you will be in a world of hurt.  Or at the very least, you will be silent-treatmented to death.  
I find this to be one of the most insulting and arrogant sentiments ever invented by human imagination.  And I’m pretty sure that even if I believed in any sort of god or gods, it would STILL piss me off.  
The chronic illness “community” at large is very religious, so there’s a lot of “god talk” that I smile and nod through.  But this is unacceptable.

I don’t care if we are best friends, or if you are family.  If you ever say this to me you will be in a world of hurt.  Or at the very least, you will be silent-treatmented to death.  

I find this to be one of the most insulting and arrogant sentiments ever invented by human imagination.  And I’m pretty sure that even if I believed in any sort of god or gods, it would STILL piss me off.  

The chronic illness “community” at large is very religious, so there’s a lot of “god talk” that I smile and nod through.  But this is unacceptable.

LifeWatch ACT heart monitor video.

I’ve been wearing this thing on me 24/7 for the past three-four weeks and it’s been an annoying, but kind of cool, experience.

Hey Tumblr Followers!

Specifically those of you who have YouTube accounts and MOST IMPORTANTLY those of you who are following me for Lupus or Chronic Illness content.  Please subscribe to my new YouTube channel where I will be posting videos once every few days about Chronic and Invisible illness, as well as treatments, products, and equipment that might be of use to you.