purplewingedwarrior

[purplewingedwarrior]

WHOO! The next topic will be How Lupus Can affect your Mental Health. I have SO much to say about this subject. So, i will be splitting the response into multiple separate posts. The will begin being posted shortly. I cannot wait to chat about all this!

What should my next blog post be about??

[purplewingedwarrior]

What should my next blog post be about??

[purplewingedwarrior]

Happy Lupus Awareness Month.

Yes, May is Lupus awareness month. If you are anything like myself, chances are you were probably a bit confused about when the heck Lupus awareness month actually is.

Some people post stuff in May, others in October. With a disease already so complex and confusing, couldn't at least our awareness month be simple? Alas, No. But don't fret because I am here to help provide clarity!

So why do people post stuff in both months? Well, May is the true lupus awareness month. This is because world lupus day is recognized as being on May 10th. So May makes the most sense to actually raise awareness for this disease. The Lupus Foundation of America uses May as a time to raise awareness and help educate the general public about Lupus. Therefore, May is the time most Lupus based organizations are actively attempting to spread awareness or raising money for research. October, while not recognized by orginizations, can be celebrated as Lupus awareness month depending on different cultural or regional impacts. Some regions that celebrate Lupus Awareness month in October include the UK and Australia.

I am from San Diego, and here our annual lupus walk is held in October, not May. So we are regionally one of the places slightly impacted by this difference. Though, if you are to ask any San Diego based Lupus Warrior I am sure they would also say May is the Month of Lupus awareness.

At the end of the day, both months can be ours to raise awareness and funds! With all we struggle against and go through, it is only fair that we would be able to have more than one month of awareness. So grab your purple clothes, butterfly jewels, and sunscreen and get out there to raise some awareness! And if you flare, call on all of your friends and family to come help support you in your efforts.

Lord knows, some days even walking feels like it is requiring every bit of effort we have. I have already signed up for a half mile walk in October, but jokingly told my friends and family they may have to carry me if my body decides to be non-compliant. They all immediately said they would bring a wagon to pull me in, or help me rent an electric scooter. To make sure I could finish. Which made me feel so supported and seen. Getting out to these events not only helps to give us reminders of how many people truly do love and support us (because I know all too well how easy it is to feel isolated due to this condition), but it also allows us to connect with others that have this condition too.

Other Awareness months to be aware of:

-March: Autoimmune diseases in general.

-April: Sjorgens

-May: Spondylitis

-May: Arthritis awareness (but only in the U.S.)

-May: Vasculitis Awareness

-June: Systemic Sclerosis Awarenesss (Scleroderma)

-August: Autoinflammatory diseases awareness month.

-August: Psoriasis Awareness month.

-September: Arthritis (Only in Canada)

-September: Rheumatic Disease Awareness (U.S.)

-September: Chronic pain awareness

-November: Nerve conditions awareness

-November: Diabetes awareness month.

Chron's Disease does not have a full month of celebration in the US, Instead it have a week combined with Colitis. It is December 1st to December 7th.

I hope this post was helpful! Please comment below any topics you want covered in future blog posts. I want to make sure I am writing things to help as much as I can.

[purplewingedwarrior]

Welcome!

Hello,

If you are here, I feel it is safe to assume either you or someone you are close to have had to fight against a chronic illness. This page is a safe space for you. A place to ask any questions or vent any feelings you might have. I am new to tumblr so I am not entirely sure how all of this works. But, as I approach 1 year of diagnosis with SLE Lupus, I knew it was important to create a space where people can have the outlet I so desperately needed at the beginning. The outlet I still need occasionally. Together we can all heal and grow on this journey together!

So, a little bit about me. About 1 year ago now, I was diagnosed with SLE Lupus at the ripe age of 23 years old. Although I have only been diagnosed for a year, the symptoms of my Lupus have severely impacted my life for the past three years. During undergrad I slowly began pulling out of more commitments in an effort to create more time. I was constantly exhausted. Feeling like I took a sleeping pill every day. I had to quite my part-time job (and luckily, was in a position I could do so between savings and my families help) in order to make it through my courses with a high GPA. I was constantly looking around me and wondering why I couldn't do everything so many other kids my age could. I blamed myself, time management, and an inability to manage stress. When in reality, it was not something in my control at all.

After my diagnosis, I didn't think life could change much from what I was already facing. In college, I had lost numerous friends due to my inability to hang out enough (both for financial and energy reasons). I Sacrificed the typically college experience to work towards my career (a career I now will not be able to pursue with my condition). After graduating I immediately got to work at a full time job. I loved everything about my job. The people I worked with, the job I got to perform, the things I was learning in terms of my future career. And yet, once again I was faced with the reality of having to give up everything in order to preform at a basic level. By the time I got to the weekend I would be tucked in bed. Often crying out of pain, or attempting to get over whatever viral illness wanted to wreck further havoc on my immune system. I never saw friends, and often barely had to energy to stay in touch with them through text. Simple household chores felt like laborious tasks. I spent most of the time sleeping, and the time I was awake feeling absolutely trapped in pain and discomfort. I kept returning to the same thought over and over again, "it shouldn't be this hard."

And I was right. It's not supposed to be that hard for people to simply exist. When I finally received diagnosis I was expecting for somethings to change. But nothing could've prepared me for what was actually waiting for me. Turns out, my lupus was intense. So intense, I was immediately put on cellcept and tests were run to see what the state of my kidneys were. It was terrifying. Suddenly, I was advised to avoid alcohol (I chose to stop drinking completely), recommended to go out on disability (I tried to keep working part-time until my body literally could not take it anymore), and told all of the different ways I could accidentally trigger a flare. It was overwhelming. Nearly 8 months into the process, I received the news that my lupus is so aggressive I might not ever go into complete remission. That my providers goal was to get me as close as possible. With that, it was likely I could not work more than 2-3 days a week without causing a full-on flare. I felt defeated. It was not longer just alcohol or social energy being affected, I now was literally facing the dilemma of giving up the very career and life I had worked so hard towards school. It was rough at first. But following the realization that my body and organs would be negatively impacted I knew the choice I need to make.

A year out, I have learned how to adapt to the circumstances and build new dreams and a new life that was attainable for me. But that doesn't mean my journey is done or that I have learned everything. There is still so much I do not know.

Throughout this process the hardest realization for me was how little people understand what it is to live with chronic illness. I see people commonly joke or make light of what many of us go through. Because of it's invisible Nature. I often had my symptoms or instructions compared to that of those who had friends and family with Lupus, who didn't understand how severe my case was. I was asked "when" I could drink again. Told everything would be fine "when" I get better. Asked what I can do to stop a flare, or know when it's coming. All things I do not have answers to. The misunderstanding of chronic illness is enough to drive you up a wall on it's own. Having to deal with it while also trying to grapple with a diagnosis that effectively changes everything about your life as you know it makes it ten times worse.

This space is for us. To vent. To ask questions. To feel seen. To share our story without fear that we will be shamed or judged. I have given you a brief glimpse into my story today. I cannot wait to share even more with you all. Feel free to message me any questions or topics in relation to lupus or chronic illnesses you would want answered in the future.

Thank you for reading.