I am absolutely fried today. I feel like a tangled ball of electrical wires. Anxious, sparking, unable to get my shit together. I’m in pain. I hate my body (for old and new reasons). I have cramps. I am angry (and which also means I feel guilty). And I feel incompetent. I don’t know why. I don’t know how to fix it. It just is right now. #realtalk#burnedout#struggling#anxiety#chronicillness#selfieaday
I’m still on a bit of a hiatus but felt up to popping in here and saying “hello” and giving a quick update on what’s been going on with me.
The autoimmune disease I have that impacts my liver doesn’t seem to want to quite down, no matter what we try. Most of my daily symptoms that make life difficult are linked to this dis-ease, so its impact on my quality of life is...dramatic to say the least.
I advocated for myself pretty loudly yesterday and am going to be referred for a living donor liver transplant. As some of you may know, I’ve been down this road before. In 2017, I was approved for a transplant only to have the physician cancel due to improvement in my condition which led to me no longer qualifying (his opinion). I’ve been so afraid. Afraid of dying, afraid of pain, afraid of leaving behind my daughter, partner, and those I care most about. While my fear is valid, it was pointed out to me, that it is no longer serving me. Most days I cycle through all the stages of grief and never seem to be able to find relief from the emotional pain I feel at the thought of leaving this life.
While I do believe that our emotions are sacred and gifted to us for the purpose of growth + evolution, I recognize that at this point, fear is/was stopping me from hearing intuition + guides + ancestors + spirit.
This is not to say that grieving must be rushed. In fact, I believe quite the opposite. There’s a difference though, in grieving vs wallowing in a pool created by my fear + sadness.
I am grieving. I’m actually in mourning. I’m acknowledging and honoring what I’ve lost and will lose. I’m crying a lot. I’m writing. Tending to an alter for my grief.
It’s not that I’m done. Because I am not. Yet, I need to acknowledge and get though this “I can’t breathe bc this is too painful” stage. I’m looking realistically at my symptoms and what I need to enhance my quality of life. What really matters to me and what can I let go of? What gives me the best chance of living a full life?
Continued in next post because I’m too wordy for Instagram today.
So grateful to have met these amazing people in our @writersvictoria Writeability Writers group out here in Gippsland.
Today was our last official day but we are looking into ways to keep our group going (hint hint any Gippsland businesses who'd like to sponsor our kickarse group of disabled and chronically ill writers!). .
I was so excited for the group to finally make it's way out here. To sit in a room of people who just get it. Where you don't have to feel self conscious or explain the nuances of life with illness or disability. Our group exceeded my expectations. A great mentor, fabulous fellow writers. All of us with different backgrounds, life styles and writing styles. Support even if we didn't always get the other person's style or it wasn't our area. Laughter. Friendship and a real boost to wanting to write. The others in the group have influenced my own writing process and made me engage with both creation and consumption of the written word in ways I would never have previously considered. Its been the highlight of my month.
While I wish we could have continued as part of the Writeability program I am excited to see what new direction and exciting adventures our writers group will take. .
Huge thanks to the other members and our lovely mentor, and here's to more stories of naval battles, vampires, space adventures, family, life, diaries, poetry, prose, and everything in between.
We were tiny and we were and are going to be fierce!
I’ve been kind of in love with “floral anatomy” pictures lately. ( especially ones of lungs.)
I love how it shows body parts I struggle with in a whole new light.
Instead of sick, instead of struggling, it shows those body parts as bright, alive, flourishing.. healthy, and beautiful.
This past week ( along with that dang stomach pain that never fully went away)
My hearts been really wonky.
( I’m wondering if my heart meds need to be adjusted)
I’ve been extremely short of breath with even the slightest exertion ( like putting on pants) and sometimes just out of breath for no reason sitting on the couch. I would feel tachycardic.. but I chalked it up to an asthma flare because my heart had been stable for so long.
But I’ve been wearing a fit bit, and I’ve realized that EVERY time I feel short of breath. My heart rate is tachycardic. Like sporadically climb to the 100s when im just sitting there talking. Completely knocking the wind of me. Or last night when I was laying in bed. I started to feel out of breath. And my heart rate climbed to like 130.
It’s been beyond frustrating.
I’ve been in contact with my cardiologist office. And will hopefully hear back from them tomorrow.
But today I found myself struggling HATING my body, and honestly hating myself a little bit.
But as I was working on this weeks vlog. ( all about the new movie 5 feet apart)
God kind of reminded me that my brokenness.. and well Humanities collective brokenness. All the heartache, pain , illness and Suffering has a greater purpose.
That My “sufferings” purpose is bigger than me.
And just that gentle reminder from heaven. Made it ( figuratively 😂) easier to breathe.
This 100%.🖤 The last 8 years have been hard as hell..Let alone the last 3. I have been through so much.. Too much for only being 23 but I know everything happens for a reason & it is all a part of a bigger plan. Life may be tough as all hell but it could ALWAYS be worse.. There are people who would give ANYTHING to be in the place you are now. I have learned many lessons over the years that have caused me to grow SO much in such a short period of time.. ➡️Tomorrow is not promised so give your best effort in EVERY aspect of your life.(Nutrition, fitness, education, career, relationships, etc)
➡️Just bc you are there for other people does not mean they will be there for you in your darkest times.. & Even if this is the case.. Never stop being your true authentic self because you would be surprised the impact you have on other people. Be kind always. Everyone is fighting a battle you know nothing about.
➡️Be thankful always & show loved ones how much you appreciate & care for them because they won't be around forever.
➡️As hard of a mental battle as you may be in.. NEVER give up. If you look at your life like it is always going to be shit, it will always be shit. You are full of potential & you were put on this planet to achieve great things and only YOU can get yourself to where you want to end up in life. It may be a challenge and a half to get there but it will be well worth the struggles.
➡️Your body is your HOME that you will live in for the REST of your LIFE. Take care of it. Watch what you put into your body, you can either fuel or fight disease. Take care of your mind & well-being as well. Get rid of anything/anyone who does not serve a positive purpose to your life.
☆"Never let the things you cannot do, keep you from doing the things you can do."☆ .
I spiked a fever of 103.9, my norm is 96.7 so it was quite worrisome. Thankfully it’s starting to come down now. I have been admitted to my hospitals ICU Critical Care Unit. Can’t say I’ve ever been there before, at least not for myself. Looks like I’ll be having a TEE (transesophageal echocardiogram) tomorrow morning. Basically it’s like an endoscopy but instead of a camera at the end it’s a tiny ultrasound. They’ll be checking my heart for endocarditis, to see if my heart is infected. That will be followed up by surgery 😕 hopefully things will start to improve after tomorrow. These haven’t been my best days or I guess I could say months and it’s definitely taken its toll. I’m so grateful for my loving and supportive friends and family, I can’t thank you guys enough. Tomorrow’s a new day and I’m keeping my spirits up. •
Different kind of booty pic.
Got an epidural steroid injection. First off, I hate needles. Like irrationally terrified of them. I can get through a blood draw now but any bigger and I have a panic attack. It took a lot of mental strength to get through this procedure and there isn't even a guarantee that this will help. The sound of puncturing the membrane still echoes in my brain and my nerves in my legs were on fire from the injection. 😭😭 Second, I forgot my boy scout training and got an ice burn. My back was still numb from the local anesthesia so it wasn't apparent until the next day. Serious eye roll.
Too soon to tell how this treatment will work. Just checking off boxes to rule out stuff at this point. My pain levels are increased. I always have to ask the question of "Am I hurting enough to go to the ER?" then convince myself that seeing some new ER Dr wont help anything and look like a "push for pills" even though that's not what I'm asking for or just being a dramatic person. It hurts to not be believed by a doctor and what's the point of telling you how I feel if you aren't gonna believe me anyways? Everyday I'm constantly aware of my pelvis and pain. It's not like you look down at your arm and are like, yeah my arm is still there, thanks for letting me know you exist.
Working towards peace, both body, mind and spirit on this tough journey.
Aquí está mi hija Arlensiu, recuperándose de la deshidratación y alegrandose por los apoyos recibidos...estamos preparando todo para buscar Visa para su anhelado viaje y ser evaluada y tratada por Especialista en Ehlers Danlos en USA. Apoyala, síguela, comparte su historia.... #Repost@mienfermedadinvisible
• • • • • •
"¡La buena noticia es que una Cebra me ofreció alojamiento en su casa con ascensor, es el primer gran paso!
Las cosas están saliendo luego de la consulta con el especialista 😍🎉 Hacer el viaje implica muchos gastos como:
1) Pasajes por avión para viajar a Caracas y de alli a Bogota con acompañante ( no puede viajar sola, ha empeorado y anda en silla de ruedas electrica) este viaje es para gestionar Visa en la oficina que hay allá para hacerlo.. 2) Manutencion en Bogotá.para ella y acompañante. Ya tenemos donde quedarnos en Bogota... 3) Pasaje para Miami desde Bogotá para ella y acompañante.
4) Estadía y manutencion en Miami para ella y acompañante.
5) Exámenes, pruebas y tratamientos que le indiquen.
Este viaje hace la diferencia entre seguir viva con alguna calidad de vida, que en Venezuela es imposible, o el deterioro progresivo hasta morir.
POR FAFOR AYUDENLA APOYENLA! NECESITA SALIR RAPIDO DE VENEZUELA
Sus cuentas: en instragam mienfermedadinvisible para ver su historia
Paypal : mienfermedadinvisible @gmail.com
Banesco 01340447084472084378 Arlensiu Daza ci 17285065
correo: mienfermedadinvisible @gmail.com .
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Perfect for summer! Medicate discreetly with Lemon Bites. 20mg each bite 🍋🍋🍋
“It has officially been two years since my hair began growing back. After losing so much of it, it was so hard for me to imagine a time when it would be long again.
This milestone feels very special to me because many of you have been following along with my journey since I first received my wig, to when I decided to embrace my growing hair, both moments were very emotionally challenging and I will never forget the pain that came with losing my hair. In fact, out of everything that has happened the last several years, seeing clumps of my hair falling out remains one of the most vivid and painful memories.
I get a lot of questions about what I have used on my hair to help it grow back. I love the Renpure Biotin and Collagen Shampoo, but in all honesty, it just takes time. That is the hardest part and perhaps the hardest lesson to come from something like this: patience. Losing my hair taught me so much patience and also how to appreciate myself for exactly how I was- with or without hair.
I hope my journey with hair loss and hair growth can provide hope to someone going through this right now. I know it’s not easy, but I know you can get through this. Be honest with yourself about your feelings and never ever be afraid to talk to someone about what you are going through. Much love always 💜” -Kristen Cosner, #patientcoach
Have you experienced hair loss from a chronic illness? If so what happened?
Wow! I love this young lady so much..she is a bright light and I had so much fun getting to spend time with her today. She absolutely has that spark! Thank you @haleyluhoo for joining us today and sharing all of your experience filming Five Feet Apart 🤗🙌❤ You impressed the hell out of me and I am so excited about all of the attention and awareness you are helping to raise in our CF community 🙏🎉🤹♂️ #clairewineland#cysticfibrosis#cfawareness#grateful
I often have to take it easy and let my body catch up with what my mind wants and I am always amazed that my Charlie girl will be extra loving and comfort me. Dogs just know. 🐶🐶🐶
Take advantage of some puppy love... have it be just for self care or for chronic illness like myself, self care and the comforts of life are what feed the soul. 🐶🐶🐶
𝓨𝓸𝓾 𝓶𝓲𝓰𝓱𝓽 𝓼𝓪𝔂 𝓘'𝓶 𝓪𝓭𝓭𝓲𝓬𝓽𝓮𝓭 𝓽𝓸 𝓵𝓸𝓿𝓮. 🥀
The Love Witch, 2016
This was fun to do on a whim after work yesterday 🖤 I am tossing around the idea of a pop culture witch series.
@milkmakeup Blur foundation in porcelain, kush mascara
@anastasiabeverlyhills brow definer in ebony
@nyxcosmetics jumbo eye pencil in milk, epic ink liner
@morphebrushes 8W warm master blush palette, James Charles palette
@limecrimemakeup velvetine in Utopia mixed with @marykayus nourishine gloss in pink parfait
This is NOT for sympathy at all but just an update for those who were asking! •
• I had a set back this weekend. I wound up in the hospital due to a major kidney infection that flared my CRPS. I’m so swollen still 5 days later that I can only wear leggings. My pain level has gone down but the problem remains that my remaining kidney is now fairly scarred. Scarring on the kidney can lead to failure and I’ve already lost one kidney. My nephrologist put me on a second antibiotic to prevent anymore scarring. And hopefully it works to keep me from having to be put on the transplant list and having dialysis at some point. He told me that while my blood work isn’t great and the scarring isn’t great my kidney is still okay which makes me feel better! As for now prayers would be appreciated! Thank you! •
• But you know what my sweet kid brother bought me an Ed Sheeran Funko POP with the rest of his spending money because he knew that this set back is hard on me and he’s honestly the sweetest person. I’m so lucky to have him in my life! 💗 •
• Also this top is from @shopthemint and the necklace and shoes are too the top comes in like 20 different colors! My jeans are rock and republic from @kohls and my denim jacket is from @tommyhilfiger 😍