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You have changed my life. You turned my life, and my parents life upside down. You know, it was very hard to diagnose you. It took 2 years. That’s 24 months- 730 days- 17520 hours- 1051200 minutes- 63072000 seconds of my life spent trying to diagnose. For a while, I was in a really dark place. The darkness comes and goes, because of the trials you’ve put me through, and continue to put me through. I have been through tortuous trials to diagnose you- countless amounts of blood work, scans, hospital stays, steroids, and doctors appointments. I also had to make arduous decision to put school on hold, stop working, and quit running half marathons (which were my passion). You’ve put me through a lot, lupus. I blamed you. I blamed myself, wondering what I ever did to deserve this. You have caused so much hurt and pain in my life. There were doctors who didn’t understand what you were, so they turned me away. I have had friends and doctors who gave up on me. You tried to break me down, lupus. You took everything from me. But you know what? I am a warrior, and a survivor. I have certain friends and family who have only rallied against me. I have learned who is there for me, when I’ve needed them the most. I have a stronger bond than ever with my parents. I have discovered my passion and love for writing, which I wouldn’t have if it wasn’t for you, lupus. I am stronger, because of you. At times, I feel like you have only broken me, but you’re only making me stronger. So lupus, you may have changed my life, but if I had the chance to go back and redo my life or change experiences, I wouldn’t. You have made me into the person I am today. So, I may hate you, and hate the pain you bring me- I am also very thankful for the mindset you’ve given me, the strength I’ve developed, and the bonds I have formed with those around me. I know you will be something I will forever have to deal with, I also know there are positive attributes to having you in my life. Just know, you will never break me.
This lupus warrior ♡
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Having several chronic illnesses, I’ve learned that with a positive outlook even during the hardest times you can still find the good in situations. Everyone endures a difficult trial, it’s the way you look at it, that determines how you will get through it. There are a million negatives of having a chronic illness, however,…
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The post Midweek Motivation appeared first on Life with an Illness.
The moment you hear your diagnosis for the first time, your breath that you lost, is something you try to find. You finally figured out why you’ve been suffering for so long, you try not to react, you just strive to stay strong. Tears unwillingly welt up in your eyes, all you want is a…
An invisible illness is not only difficult to deal with physically but it’s also mentally. An invisible illness is defined as not immediately visible. When you’re hurting and miserable the last thing you want to hear is “well, at least you look great, you don’t look sick”. Here is everything you need to know as…
So, you’ve just heard you have celiacs disease, or a gluten sensitivity. When you are told to cut out gluten it can become extremely overwhelming. You look in your cabinet and literally everything seems to have wheat in it. So, what do you do next? Here are tips for going gluten free. If you cut…
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My journey officially began 2 years ago. Wow, it’s truly insane to think I’ve been chronically ill for that long. It’s strange to think after countless amounts of tests, Doctors appointments, and trials of treatment; I have been going through this for 2 years. I have experienced more in 2 years, than some people go…
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Having a chronic illness, or a rare illness can be stressful. Not every doctor has heard of all the different types of illnesses, let alone knows how to treat them. In most cases, for instance, in my case I have to drive out of state to a Clinic for treatment. Unfortunately, going to an out…
Lupus is an autoimmune disease, where your immune system attacks your own tissue and organs, mistakenly. According to Womenshealth.gov, 9 out of 10 adults with lupus are women. Unfortunately, there’s no cure, but it can be managed by a doctor and medication. Lupus causes inflammation in the joints, and organs. It also comes with a…
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A hugeeeeee thank you to Tasha for nominating me for the mystery blogger award! My heart is so happy to be nominated! Please take a second to check out her blog! I always enjoy reading her inspiring and absolutely amazing posts, and you will too! Go and check out Tasha M.’s blog Painwarriorcode! Well, let’s…
I had the pleasure to be featured on -what you blog about. Thank you so much for asking me to share my story on your blog! Please make sure you click on his link below! Life with an illness blog My blog is about sharing my journey with others of having several chronic illnesses. I…
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A chronic illness brings darkness to your life. It brings a cloud of sorrow over you, and everyone around you. A Chronic illness changes your life. You have to learn how to shift your life, to fit this troubling illness into your schedule. Here’s how a chronic illness forces you to grow up too early.…
With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it…
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Your world feels like it is crumbling at your feet, All you want to do is climb in bed forever, and hide under your sheet. You know you won’t ever give up, But you just pray and wish the pain will just let up. You have a little piece of light in your heart,that the…
Originally posted on April 28, 2018 on Journey Into A.
A couple nights ago I was having some real nasty, dark thoughts and I just needed to refresh somehow and home decor is one of my facets that really helps me out of that trench. I love it, I’m inspired by it, I strongly believe that what’s in your environment is what’s basically in your head. So I started reworking one section of my room and the final look is about 90% different than it was prior.
Here’s a little of the “before” and I guess a bit of background. (Side note: I pulled these pictures off my Instagram so they’re not all edited the same- bear with me here.)
Now, I have enough furniture (minus a couch and bookshelves) to decorate a 700 sq. foot one bedroom apartment- which is what I lived in with my ex for 3 years. So moving into a smaller room (12’x11′), I’ve got to “store things” in it by maximizing the space I have. That wall has 4 pieces of furniture on it. One being a smaller little thin table, one is a (heavy) confessional chair from the 1800s, and the other two are larger pieces- a dresser and a rustic thin table. Two of those items I cannot move, one is just perfect for storing smaller things and housing things I like to look at- so those three are permanent. What is on top of them or added to them, however, is not (except for the TV, there’s no other outlets).
There wasn’t a whole lot I could do with this wall because of those doors and it doesn’t have any outlets. The piece that stuff is on top of is a big rectangle table- like the size of a set of drawers, but open inside with one prominent shelf (I’ve got a plastic drawer that houses my winter accessories on there, some journals, helmets, random knick knacks) and one that’s more hidden underneath it (perfect for things I don’t know where to put/cleaning products/old paperwork, etc.). This piece especially had to go here because on the other wall, there’s the only vent and if it were to sit there, it would cover it which is a huge no-no for me when this girl needs her warmth big time in the cold winters. I mainly made the top of this prettier because it would be something I’d see more often when I woke up in the morning.
I had those baskets under it to house more books. The bottom shelf had books lined up vertically. I went through more of my things under my bed (boxes) to sell some items I should’ve prior to moving from CA- books, DVDs, etc. I sold a bunch of books that I really didn’t need anymore- none that would inspire me again- and I pulled out more that I had had on my list for a while. So then this area became one where I housed the books I wanted to read and this way I could see them and have easier access to them. The remaining books under my bed are ones I’ve already read or ones that I’m not in a hurry to read. I added a bunch more books than there was before, which meant I needed to make them all fit- which is how the stacking variations came into play. Those stacking variations led to openings to fit vases or knick knacks I didn’t have a place for previously. Then on top of the table, I got a Himalayan salt lamp, and the rest were just some knick knacks I had to make it look nice.
This was mainly moving that round mirror over and removing/adding knick knacks. I also got some fake florals from Michaels that I made into fun, bright floral arrangements for pops of color. To the right, hanging on the door, I moved a picture hanging garland that used to be strung around the mirror. I felt it added extra color and love to an otherwise bland/normal area.
The main thing I wanted was to move that mirror over which meant I had to move a top table organizer (not the actual name for it, but that’s the best I can describe it as right now) and a bigger piece of artwork. Not a whole lot happened here, but it spruced it up, definitely. The left wall, however, didn’t feel right at all. I had to move the organizer (thing) on top of the dresser because it was longer than that thin tall table which then lead to the TV put on top of it.
Now there was a lot of added height to that space which I hadn’t originally expected. I didn’t think that organizer was longer than that table, but I wanted so badly for that mirror to go on the other wall and the mirror wouldn’t lean safely on that organizer’s smooth top (it could fall after the dog jumps off the bed). Having started this project 30 minutes before bedtime, I had to leave most of the (very) impromptu project for the next day.
Like I said before, I was having dark thoughts and I kind of threw my hands up (at how I was feeling inside) and thought “okay change something”. My environment is always a good one to change up because I have to live in it and if it’s not inspiring me or making me happy, I need to find a way that will. I wanted these two walls now to be more colorful and come alive again. This photo was after I had looked around in the morning sunlight at what I’d done which was the catalyst to my brain then reworking the puzzle and for the rest of the day I was coming up with ideas on how I wanted it to look and feel, how I could have even more storage space, how I could be further inspired in my day to day.
See the finished product and read the last 466 words here.
Unfortunately, most people have experienced the excruciating pain of a migraine. The agonizing feeling when your head throbs, and pulses. Light and noise can cause a piercing pain. The pain is so violent that you feel sick to your stomach, and maybe even throw up. It’s absolutely horrendous, and terrifying. Due to the excessive amount…
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Life will always throw trials and tribulations your way. There are times where you just want to give up, and go back to bed. It’s a lot easier to just say I’m done, I can’t do this anymore. It takes a truly strong person to pick themselves up, and continue the fight. It takes a…
Originally posted on April 21, 2018 on Journey Into A.
My top artist. I think they just may be my favorite band of all time (which is huge for me to say). I could listen to them all the time… in fact, I did for months just this past year. Only them on repeat.
I’m not entirely sure why, but they literally make me happy. I listen to them and my mood gets better, I feel relaxed. Any anxious feelings go away. Perfect for the car before I go to do something that makes me feel anxiety. Even writing this post now makes me really happy.
The song I’ve probably listened to the most is “Sabbra Cadabra”. It’s upbeat and just fucking great. If I were a runner, that’d probably be the one I’d start out my run with. It’s definitely high energy and gets me moving.
My next most listened to is “Killing Yourself to Live” which is really one of my current theme songs. It’s about the way people are living their lives in misery. I see it as that end goal of “if I work hard enough now, I’ll get to live my life after” whereas life should be lived now and you’re dying already.
Read the last 135 words here.
Infusions are used for several different illnesses.When your doctor tells you that, you will now be receiving infusions, it tends to make you feel very overwhelmed. There are also several different types of infusions. Infusions can also range in how long they will take. I had to get an IVIG infusion for lupus, and now…
Originally posted on April 20, 2018 on Journey Into A.
It’s been a few weeks since my last post (part one) and honestly it’s because that one brought up a few things that rocked me a bit. It was also a post where more people read it from my Facebook page, meaning a lot of family or family friends read it, and seeing those numbers kind of freaked me out. This time, I’m just not going to look. It’s all memories that I’d like to get out of my head for my well-being and I can’t get anxious about those I know reading it.
Moving on, let’s dig up some more.
How about the relapses?
There were a few that I had witnessed. It was quick and rapidly terrifying. Most of the times were at a hotel where there would be a fully stocked mini fridge. Other times, she’d bolt to the local liquor store. Usually prompted by a fight between her and my old stepdad or otherwise it seemed to just happen out of the blue.
You knew before seeing her or smelling her. The energy of the “break” was always palpable. It was a certain kind of energy that I don’t wish to feel ever again. It was a downward shift mixed with shame, guilt, and a crazed excitement (for lack of a better word). It was disgusting and it clung to you and filled your whole body.
Then when you saw her, she was flighty, impulsive, and grasping desperately onto pretending everything was fine. I couldn’t hide my facial expressions so the moment she’d see my face, she always realized I’d known what happened and that I was scared. She then couldn’t hide so then she would try to pick fights with my old stepdad to make it seem like there were reasons within reality as to why she relapsed.
– This is only with alcohol, by the way. I couldn’t tell you much about the drugs because I wasn’t aware of them until much later. I also am only speaking about the times I was around. –
She’d tear around the room, spinning this wild energy around until I couldn’t breathe. There was nowhere to go and I had no clue what to do. I’d hang on the outskirts of the room and try my hardest to pretend I wasn’t there. I’d watch TV or listen to music. It helped a little, but never enough. When her attention would come to me, I’d pretend I hadn’t been listening or that I didn’t see what she’d just done and she would turn away again and I’d be invisible all over.
Read the last 211 words here.
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Having a chronic illness, is honestly brutal. We are always faced with hard trials, and dealing with intense pain. It’s like constantly living in a nightmare, that you can’t wake up from. It’s extremely hurtful, and a huge letdown for someone to call those with a chronic illness lazy. Unfortunately, it’s common to hear. A…
With having several chronic illnesses, my medication list is extrmely long. It can often become overwhelming looking at my list and trying to organize it. It’s also very easy to forget I took a pill, or take a pill and forget I took it. Here are easy ways to organize your medication. Use a pill…
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With having a chronic illness you are constantly being thrown difficult trials. Having several chronic illnesses myself, its been the hardest thing I have ever been through. Even though I struggle, I always get asked how I stay so positive and how I have a great attitude through all of this. Everyone has their bad…
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Bright colored eggs everywhere, Love and sunshine fills the air. Laughter and hugs are being exchanged, Kids sneak around switching the eggs, so the original hiding spot is being changed. You hope your chronic pain won’t ruin the day, But you hide the pain at your family gathering so you can stay. Hug your family…
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Originally posted on Journey Into A on March 26, 2018.
I’m not sure how many times I saw my mom pass out drunk. A handful of the times, she just fell to the floor. I was so little, I didn’t understand what was going on, but I knew it wasn’t good. I’d cry and wail.
Luckily, it never happened (as far as I can remember) when I was alone with her. My old stepdad (he was her boyfriend/fiance for the majority of time that he was in our lives, this story mostly contains bits from before they were legally married, but I call him “my old stepdad”) would always be there. He’d pick her up, wake her as best he could, and move her to the bed or couch.
One time that comes flashing back to me is the time where she decided to leave him. Wasn’t the first time. This time, she’d gotten an apartment not too far from our house. My old stepdad and I went to visit her (why I was with him and not her, I’m not sure of) and they got to fighting again. I think now the reason they fought was because she was drunk, but I’m not entirely certain.
Read the last 182 words here.
Wow! I am speechless!♡ I just want to take this time to thank you. Thank you, for reading. Thank you, for your support. Thank you, for helping me spread awareness, and helping others. Two years ago, I got sick. After countless amounts of tests, doctors, trips to clinics, and hospital stays I still am fighting…
Originally posted on Journey Into A on March 24, 2018.
Time for another series.
With this one, I want to be clear that these are actual secrets. They’re things from my childhood that I witnessed that I never told anyone about. Not my dad, not my therapist, no one. If I had told them about it, it was years and years later when nothing could come out of it.
I was extremely protective of my mother and knew if I told anyone these things, they’d take me away from her. I was terrified of that. I thought it was the right thing to do. If I had spoken up sooner, maybe I would’ve been able to save myself from the things that pop into my mind now before I go to sleep (that’s mostly because I’ve been releasing things that used to keep me from falling asleep – look up my things that broke me series), but at the same time, I wouldn’t have known I was saving myself from anything at all and instead I would’ve most likely been resentful that I was taken away from my mother.
If I’d spoken up sooner, who knows who I would be. I seriously doubt I’d be the strong person I became through those experiences. I try not to wonder about those things. The point is, these experiences shaped a lot of my life and the decisions I made.
Read the last 79 words here.
I decided to get into the holiday spirit with this fun and colorful wreath! Having POTS and several chronic illnesses, I always have to battle extreme fatigue, and my hands become numb after awhile. There are a lot of things I am not able to complete but I decided to get involved in the Easter…
Originally posted on Journey Into A on March 23, 2018.
For some reason, I crave watching The Godfather (and The Godfather Part II) every once in a while. In the past, it’s usually been when I do a deep cleaning or something- I’d have it on in the background. This time, however, I watched for the love of it… three times in one week.
I couldn’t help myself! and I couldn’t stop. I think it could possibly be because I hadn’t watched it in a couple years? Or I’m just making up excuses for no reason. I enjoyed every minute of watching those two movies over and over. It never gets old!
Read the last 67 words here.
Originally posted on Journey Into A on March 22, 2018.
I have been listening to Lesley Gore a lot lately. “You Don’t Own Me” has been played about 20 times which probably isn’t all that surprising since all my recent changes have been shedding away things that have had “power” over me. I can’t get enough of it. It’s like my theme song of the moment.
My favorite part about her music is that it’s bubbly with lyrics that are sometimes a punch to the face. She’s a badass! “Don’t Call Me, I’ll Call You”… *insert heart eyes emojis here*. She gives women power and strength!
There’s pain, angst, absolute beauty, and total strength in her voice. It’s empowering. I can definitely say that I am in love with her! Look her up!
Thanks for listening 😉
Midweek Motivation is here to inspire you, to get you through the week! ♡
Originally posted on Journey Into A on March 20, 2018.
I believe an update is warranted since I’ve made all these life changes…
It honestly feels like I have taken felix felicis, aka liquid luck (for all you non-Potterheads out there). It feels like every single move and decision and thought I make is the right one preparing me for the future I so wish to have. It’s incredible.
I haven’t felt this type of motivation in years. Solely because I had no idea what the hell I was doing or what the hell I wanted. Now, though, each day is it’s own step toward a greater goal. I am first and foremost bettering myself as a human. I’m changing the way I think and how things make me feel. I’m changing how I react to things and the way I talk about things.
Read the last 109 words here.
Originally posted on Journey Into A on March 19, 2018.
First and foremost, I cannot stress enough that my ex had nothing to do with breaking me.
The breakup, however, did.
Let’s start with the beginning and get to where I broke….
I wasn’t happy for a while in my relationship, but thought for so long that it could work itself out or there would be some moment where it just fizzled easily apart. Obviously, neither of those options happened, but what did was a wake up call that I had never anticipated.
I was sitting at my work station on a Friday, just doing what I did everyday. Then, bam! Old Alex appeared in my mind. And she was mad. She’s the girl I had left behind almost 4 years prior, strong and independent, badass. She began listing all the things I had sacrificed and would sacrifice in the future. All of it was true.
Now, she wasn’t entirely mean, but she definitely woke me up. I’ll yell ya, she was definitely scolding me. I could see clearer then than I had for a very, very long time… and I was horrified. I couldn’t believe what I had done and who I had let go of. I had lost who I really was… and for what? Nothing. Nothing in the world was worth giving up that person.
On top of that, I had given up many facets of my life that gave me joy and was going to continue to accept less than what I deserved. So I had not only lost myself, but I had stopped doing things I loved doing and would continue to accept less in my future than what I had previously always wanted. It would be sacrifice after sacrifice made by me and only me (hint: he wasn’t doing any of the sacrifices).
So. Obviously we know what happens next.
I got terrified and absolutely panicked after I broke up with him the first time. Yes, it took two times. After the first time, I told him specific things that needed to change. He tried for a few days, but still it was just one or two things on the list (a list of things very, very easy to do, I wouldn’t ask someone to move mountains if I knew it were impossible). A few more weeks go by and I can’t take it anymore. Old Alex was still in my head keeping me on track. I tell him I had to go and stay with my friend, if you read part one of this series you’d know, he said he loved me out loud for the second time, and I left.
Less than a week goes by and I met with him in our apartment and I ended it. He just sat there and shrugged.
It was 100% the right thing to do and I don’t regret it for a second.
Here’s where I broke…
I had thought I was going to marry this person and have kids with this person and be with him forever and always.
Read the last 283 words here.
Hey there everyone!
Another change has happened within the last few weeks… I post a positive message (image) to my Instagram account every day! It’s typically a message that I will take with me through my day and I hope that seeing it helps others during their day. Check it out here!
Originally posted on Journey Into A on March 17, 2018.
Sometimes I don’t really even know how it happens, but I pretty often have amazing conversations with my passengers (I drive for a rideshare app). Those conversations make it all worthwhile, work and, truthfully, life itself (shows humanity in a kind light). No matter how I’m feeling, I know that any day I go out driving, I will still have one of these awesome conversations. Those conversations sometimes help me make sense of the world, or they let me see joy in small things, or they teach me new ways of thinking and seeing. It’s nothing I’ve experienced in any other job.
So, a couple of weeks ago, I had a passenger for about 40 minutes (traffic). He started off by asking me if I like Black Sabbath because I had their playlist going, to which I replied that I love them. Then it branched off into how I only really listen to oldies classic rock and how that originated and how it’s been 90% of what I’ve listened to for the past 5 years, yadda yadda yadda. Well, it turns out a lot of our music “origin story” was the same. I’ve never met another person that had such similar experiences! It was wild!
We both were raised listening to oldies classic rock. My dad would always have it on and so would his dad. We both didn’t know there was anything new for a chunk of our childhoods because all we heard was classic rock. Once we figured out there was a lot more music out there, we both explored, but as we got older, all we wanted to listen to anymore was oldies classic rock. Sometimes, we listen to newer stuff, but it doesn’t last long and we revert back. Put on a classic rock station in the car and we can sing along to any song, like a human jukebox, BUT we have to hear the first few seconds of the song to have the lyrics spring to mind. More often than not, we won’t know the title of the song or the artist.
I felt so normal. Not like it was ever a major negative with my life, but I haven’t met anyone else with such similar experiences. Those experiences are usually anecdotes when talking about how my taste in music came about. Apparently, it’s a little unusual what I like to listen to so I tell them those things which usually brings about a laugh. I like to think those experiences made me special because I’m proud of my music taste- a lot of it took deep exploration (thank you internet) and lots and lots of listening time.
Read the last 179 words here.
Originally posted on Journey Into A on March 16, 2018.
Here is one of my playlists (via Spotify, I hope you have it). It has songs that make my mornings a whole lot easier! Anxious? Depressed? This playlist makes me feel at ease and joyful.
It includes songs from George Harrison, Donovan, Paul Simon, Carole King, Townes Van Zandt, Sandy Denny, and more! I hope you get the same feelings from it as I do!
Happy listening 🙂