Inspired by Jamie/ Lupie Cover Video

Hey followers! I hope you're all doing well. I've had a tough few weeks. I've been feeling pretty badly. 

As you all know, I try to find the good in things whenever I can. I started this blog a long time ago and I don't really share a lot of stuff because honestly I guess I just thought it was pretty ineffectual. I started this up because I try to write the truth about my life, whether it's good, bad, or ugly. I thought if someone else saw it and it helped them to see they weren't alone, it would be worth putting myself, my feelings and my experiences to the world. I've only been posting here every once in a while because although it's therapeutic for me to write, I didn't feel like it was really necessary to share it because nobody was really seeing it. Well, as I often am, I was wrong. 

I have a new friend named Jamie because she saw my blog and felt connected to it. She reached out to me on Facebook and told me how she felt about my writing and it filled up my heart! I couldn't believe that I had reached someone and helped them feel less alone. That has always been my intention from the start. I was so honored and touched that she felt like my writing was so powerful. We ended up having a 2+ hour conversation about the things we've been through and the trials we've faced. It helped me again to connect to someone who has faced a lot of the same trials I have. I never cease to be amazed by the strength of the people I've met. So this blog is for Jamie. She has encouraged me to write more and put my life back out there again. So, this is what I'll be doing. I'm going to go back to my notebook and catch up on the things that I've been writing and post them here for you to see. 

One of the things I did a while back, was rerecord a "lupie" version of the song Royals. My friend Falanya at A Lupie Existence has done several cover songs and I thought they were such a cool idea. I've sang and written dumb things like this before, but I never really thought to post it until she encouraged me to.

So, I hope you enjoy this goofy song I call "Normal". Also, you can expect more posts in the next few weeks. I'm going to post as much and as often as I can thanks to an inspirational woman! Thanks Jamie! Be well!! 😀💜💜💜💜

You can check out "Normals" here hope you have fun watching. I had fun making it! Lol

http://youtu.be/SNzPw8YULpU

Lupus Rash Discoveries

Hi guys! I just wanted to update you all. I've had some wicked flares lately and I wanted to share something with you all. I get the typical, textbook but extreme malar rash every time I have a flare. I'm lucky enough to have a mother in law who's an esthetician. So, during my last flare, she wanted to try to help. I was definitely skeptical because usually nothing helps the rash. It feels like my face is on fire and it looks insane! But she's an amazing woman and as you know from my past posts, she bends over backward to try to help in a any way she can, even if it's small. 

You all probably know where I'm headed, IT WORKED! And I do mean worked! It helped that heat that we all know and hate and it looked much better! So, if you need some release from your skin, talk to a person who does facials. A lot of cosmetologist a do it, but there are also people like my MIL, who are trained just for skin. I know it goes without saying, but I feel I should anyway, tell them you have lupus.(it can limit some of the services they can do and will help them determine the best product to use.) 

I don't know about you, but when I'm having a flare, something as "simple" as helping alleviate the rash can do a lot to make me feel better. If you find a good one, they can work wonders! Also it's relaxing! Which you all also know, can help with the length and intensity of the flare. Stress can trigger and amp up a flare easily! The photos attached were taken the same day. As you can see the results are kind of amazing. Also, that one treatment from her seemed to fend off the rash for the entirety of the flare. (I had to do normal skin care myself, but just cleanser and moisturizer.) some of the products can be pricey, but again if you find a good skin care professional, they'll provide you with samples to help you find what works best for you! I'll try to include more information later, such as products and such. The thing I do want to add is to read the product labels on your skin care products. For example, because I get the rash so badly and easily, (literally 30 seconds of sunlight turns me into tomato head) I bought and was using a neutrogena moisturizer that had SPF in it. I didn't think to look any further because I'd made a good choice is choosing a good moisturizer that also had sunblock in it, or so I thought! Upon further inspection of the ingredients and warnings (by my MIL lol) it turned out that the product actually had a warning that it can cause your skin to be more suseptable to the sun and cause sunburn and hyper pigmentation! So please be aware of that and of the word "fragrance" in skin care product ingredients. I've researched this on the advice of several skin professionals. It turns out the word "fragrance" in an ingredient list on products is basically the word they use if they don't want to list a product. I just always thought the word "fragrance" was just the ingredient to give the product it's scent. However, it turns out skin care (and other) companies get by, by listing potentially "harmful" or less than desirable ingredients to the trained eye, by simply listing "fragrance". I know this is kind of boring, but I thought it was pretty enlightening. Just be the judge of the photos. Just a small side note, these photos were taken in February and I had NO sun exposure!! 

These were taken with no filters or editing. I tried to use the same pose, lighting. Etc. so the differences could be seen! 

Psychological Illness

When you live with a chronic illness it's stressful in so many ways! It's easy for other to watch and judge our lives. Almost everyone I've talked to says the same thing. They've been called, lazy, fakers, drama queens, attention seekers, drug seekers or just flat out overall worthless. Why or how anyone could think we could choose this life is crazy to me. We deal with that kind of judgement EVERY DAY! Most people couldn't handle it once. Does that make us better, or stronger? No it doesn't. We just don't have a choice. It's the hand we were dealt!  It's a financial, emotional, physical, and psychological struggle! The physical is difficult and so is the financial aspect. What I wasn't really prepared for were the psychological changes. 

Financially, we all know how ridiculously high the expenses can be. Between actual, so called, medical care and just logistics it gets expensive. I don't know how people with lupus, that don't have insurance are able to survive! For example, if you lupus is, for the most part "under control", and you have a good rheumatologist, the "norm" for is, is insane for most! Every 3 months means, a rheumatologist appointment, lab work, and whatever prescription costs you have in that time. Not only that but we typically have to also have a family doc on the side, which is generally at least an appt. every 6 months. God forbid, your lupus or symptoms aren't under control! I'm in that situation now. This means I need prescriptions every month at least. I also realized earlier that because things are so tough physically, I'm hard pressed to think of a month where I don't have to visit a medical appointment. That's not to mention, urgent care, ER, or extra prescriptions I might need. (Ie. steroids, nausea meds, etc.) so the physical and financial strain is pretty significant. Those issues are however tangible to a certain degree. Although bills seem bottomless and pain seems to persist, those can be dealt with to a degree. I can work on paying down my medical bills. I can take medicine or do different things to manage my pain.

How do I explain the emotional and psychological problems? It's hard to believe that I'm only 30, but I've been living as if I'm in my 60s or above for 5 years. How can I explain, that I have a hard time relating to people my age? They're busy with their children and friends and family and I'm busy with meds and doctor and hospital visits! The inspiration of this post cane from speaking with a friend and realizing how often I truly have to see doctors . I have a doctors appointment tomorrow, (routine appointment) and I'm trying to remember when a period of time has gone by that I haven't. It's a struggle just to maintain tasks that people do every day without thinking. Isolating yourself from others, whether it's intentional or not, is NEVER a good idea. How can you stop it? The life we are forced to live does it for us! Doctors appointments are the majority of my outings. Most of my money goes to doctor bills and meds. Being chronically ill, to the point of disability has caused me to fight with the person I want to and truly am, and the person the disease seems to be trying to turn me into. I'm clawing at the personality I have and how I want to be. 

The basic question that I'm trying to ask is simple, but I have yet to find or be given the answer. How do you remain your "normal" self, when you feel like everything that was normal about your life has been stripped away? How do you keep the "spark" in your eye when you feel like you're drowning in the ocean??Please feel free to offer any advice you can, or just feel free to vent if you need to. That's kind of what I needed. If you're reading this, thank you and I'd love to hear from you! :-) 

Who would choose this????