Day 365

As the last few hours of 2018 wind down I must say thank you. Thanks to all that have stayed for this bitch of a ride. Since the last I wrote a lot has happened. I became really sad and didnt want to write or do anything for that matter. Once I got over it, the procrastination started, then the worrying. I just became lost. The transplant evaluations were put to a hault. Well the Friday before Christmas i was told I wouldnt be put on the list. Why? Well because i dont have a working esophagus. The transplant will make ne more sick that i am. Sucks but in a way I’m relieved. I was always scared it wouldn’t take. Then that would be tragic on my end. Ive realized that it’s going to be ok though. I look at it as i was denied because it wouldn’t have worked. I have found that i have mixed connective tissue disease as well.

All 2018 I’ve been stopping myself and punishing myself for choices and overthinking and just being too concerned with the consequences thay I forgot to live. 2018 tried to take my spirit. But guess who is still here.

For 2019 I am living. I am walking away from deception, fear, self doubt, procrastination, and self sabotage. I am walking with God by my side, angels cheering me on, and love for myself.

Tales of a Lupie 5

Today I went out and enjoyed life. Not just for me but for Asha. I enjoyed the sun rays, the breeze, being able to drive again, the company of my sister, and food! For those that don’t know Asha was a wonderful woman who blogged about her daily life via YouTube. She shared her daily struggles with lupus and pulmonary fibrosis (same condition as me), as well as makeup and fashion tips. As she waited for her lungs she ended up spending the last 8 months in the hospital.

As I went through the day my mind kept wondering back to Asha. She will be missed so much. I really looked forward to her posts everyday. She gave me hope and kept my mind at ease. Asha had the best spirit and knew how to make you stay positive minded and grateful for every minute of the day.

Like I’ve stated at first i wasn’t sure if I wanted my transplant. These days have proven to me I must go through with it. I have so much to live for. It’s an honor and a gift to even make it this far. I can’t stop fighting. Life is really precious and I can’t see myself giving up on it. It’s going to be a process and a lot of difficult work but my support system i great. I have nothing to fear.

Though i can’t do much now im vowing to do something different everyday. Make the most of my day. Ive been doing a really good job lately but i can do better. Take a chance everyday and enjoy the minutes. Enjoy every aspect im able to do until the day im blessed with my new lungs. Evaluation Week I’m ready for you!

Also! HAPPY BIRTHDAY MICHAEL JACKSON! 😍😍

Life Free. Pray. Drink Wine.

Tales of a Lupie 3

Hey Y’all! So things have been so crazy. I have so many rollercoaster days I’m starting to wonder. Lately its been up and down, up and down. My feelings go from happy and content to annoyed and not wanting to be bothered. Bothered by anyone but a few. That’s only a handful of people. It could be a number of things that cause me to feel this way. The medicine, stress, or just cause I’m human.
My good days have me feeling so invenceable. Makes me feel like i can do everything in One sitting. Then im knocked back into reality when im gasping to catch my breath. My bad days i just stay to myself.
Today i had more ups than downs. I had a whole list of things i wanted to do. Unfortunately my energy didn’t match the amount of ambition i had. I ended up just laying down and thinking. Maybe tomorrow ill have enough energy to do what i had planned. Ive slowly starte ed to learn just to do wht my body tells me. Maybe had i started doing that earlier i wouldnt be so sick now. Oh well. Cant dwell. I just know better days going to come. Cant wait for this evaluation so i can know if i qualify for a transplant. If i do ill be one step closer to my blessing. At first i wasnt sure if i wanted to do it. But then i prayed about it and realized i have to have faith and stay positive. Though its a gamble, either way, i have to remember whatever happens happens.

Like always, remember:
Live Free. Pray. Drink Wine

Tales of a Lupie 2

These past two days have been good. Ive had very good reports from my doctors. My primary doctor said everything checks out as well! Kidney and liver function is great. No diabetes. Blood levels are good. Iron is lower than it usually is so I have to take iron pills again at some point. He isn’t rushing me to do those though. Lungs sound good. Ima a perfectly healthy sick person if you ask me lol.

My Mayo Clinic appointments are still set to start Sept 10th. Im extremely nervous about everything. So far i have my schedule but they keep sending revised schedules so what i have may change again. I am also suppose to be filling out paperwork once they send it. This evaluation will take a lot out of me but I’m here for it all. Its amazing how literally everything on a person can be healthy but one thing. I look at it as the Lord preparing my body for my new lungs. Its a wonderful feeling.

Ive been noticing society really does still have hope. You know at times humanity will have you second guessing based on certain human interactions. I was called beautiful at random yesterday by a Youtuber named AVIVA_Films. Her words were like right on time because I was feeling like i wasn’t. You never know what someone is going through, but you also never know how a person is feeling either. Just a random positive comment can put someone in a better mood. Its great.

Everyone stay positive and rememebr to smile.

Live Free. Pray. Drink Wine.

Tales of a Lupie

Heeeeyy y’all!!! So today was a good day. I had a doctor’s appointment with my rheumi (rheumatologist ). Eveything is checks out. I will be starting a new treatment soon. Fingers crossed this one works. I have faith that it will though. I will be closely monitored so that relieves some of my anxiety. As always they had trouble getting blood from me. I was drained… literally. One vein ran out of blood and they had to stick me again. It was crazy! Another doc visit tomorrow and hopefully all checks out then too.

Today i have been thinking a lot about starting school again. I have a lot of time on my hands when i’m not at the doctor or having therapy. Even though im still in the early stages of trying to get a transplant, i still need to plan my future for when i get new lungs. I really want my masters, but I have an issue. Im not sure if I still want it in cybersecurity. Ive started realizing i have an interest in graphics and photography but i also love animals (mainly dogs) too. Do i continue with a goal I’ve had for 5 years or start a new journey? Feeling a little lost on that aspect. It’ll all work out but for now let’s live free, pray, and drink wine lol.

Random Thought

SEXUALITY

Why is it women tend to feel like a whore because they are sexual but for a guy he can feel confident and masculine. Me being the person i am im very open minded and feel like if a woman loves sex so what. Just do it safely. You shouldn’t have to hide or suppress it. Its ok.