One Tough Spoonie

@one-tough-spoonie | contributor
Just a girl trying to spread awareness about chronic illness while helping people know that they are NOT alone.

Living With Multiple Chronic Illnesses

I just received yet another diagnosis. It hurts. It feels as if my heart has been ripped from my chest and stepped on right in front of me. I feel hollow, confused, lost and devastated. I never knew it would just keep adding up. That my life would become a game of whack-a-mole. There was a point in my life where I was told it was “all in my head.” Since I got my first diagnosis it seems the rest are just rushing through. And I can’t seem to stop it. I cannot help but think, “how could there be this much wrong with me?” I end up crying because I feel like I can’t grasp all that has been given to me. I am truly overwhelmed. When my journey with my health first started, I kept being promised “if you do this, you will feel better.” I was told to eat a certain diet, try meditation, exercise, drinking more water, yoga, and a million more things that have yet to help me. What happens when you try all these things and do everything they tell you to do and you still get worse? I wasn’t prepared for that possibility because I was so focused on taking every step to finally feel better, to feel “normal.” As time goes on, I’ve gone from pills to injections to infusions. Would you believe me if I told you I still don’t feel all that much better? And my list of issues keeps growing. It’s a difficult place to be. I am thankful for answers because I know how devastating it feels to not have any! However, it is a lot to take in when your medical file feels like a novel. When I meet medical practitioners or new people in general, they look at me in shock, puzzled and dismayed. I am not searching for pity. I don’t expect anyone to feel bad for me. What I am looking for is some understanding that right now I am going through hard times. And it’s OK for me not to be OK. I am scared of the reality and fragility of my life due to living with multiple chronic illnesses. I wasn’t given a “how-to-guide” or “chronic illness for dummies” at the time of diagnosis to help me navigate through this new life. I keep trying to build myself back up every time I get knocked down. I keep learning a new normal only to have it change again. I am exhausted. I’m spent. I could really use a break. I never could have imagined my life would have turned out this way, living with nothing but limitations and rules. I see doctors, medical staff, labs and imagery more than family and friends. I try not to live in fear of what is or could be coming my way, but it’s harder than it looks. All I can do is hold on to hope that one day it won’t be this hard. That all this “work” to get better will actually pay off. That all that has been taken from me will eventually come back. In the meantime, I would appreciate it if people would allow me to feel the feelings I need to feel, because life is throwing punches at me, but I still haven’t backed down.

Community Voices
Community Voices

When the ER Cannot Help You and Your Autoimmune Disease

Where do you go when you feel the worst you’ve ever felt in your life? Where do you go when you feel like you need immediate medical attention or something bad is going to happen? The last resort when you just can’t handle it anymore? Most of us would answer, the hospital!

Well that is where I went… and they couldn’t help me. I don’t know why, but I was surprised this time. I really shouldn’t have been, because for many years I would end up in the ER with all different reasons prior to my diagnosis. I thought since I know or at least my doctors think they know what’s wrong with me, it would somehow be more helpful and I might get help. But even when my husband was driving me to the hospital we both said, we wouldn’t be surprised if they didn’t find anything but it’s better to go and make sure than to ever put your life into jeopardy.

I went because for almost a week I felt like my body was going to give out, like I couldn’t hold on. I felt like my body was being invaded and there was nothing I could do to stop it. The weakness that came over my body was something I’d never felt before. I was petrified.

When I got to the hospital I told them my symptoms and told them I have an autoimmune disease and basically all the fun details of which ones I have and what I’m currently being tested for. Once I got to my room, a nurse came in and I told her the story again. She looked at me with sorrow on her face and said to me, “We are only as good as our tests, and you’d think here in the ER we would be able to figure out anything, but that’s not true – and I’ve seen many people come and go through here with no answers and I’m so sorry.” She went on to even tell me about her friends who have autoimmune diseases and their same experience.

Next the doctor came in, the person I am hoping is my savior at this point. To myself I’m like, “Please find what’s wrong, fix me, make this feeling go away!” He was sincere, nice and seemed like he wanted to help. He told me a similar story as the nurse but said we would search high and low to see if I had any hidden infection that maybe my chemotherapy could be masking. Since I felt faint they even checked my heart. I did a series of blood work, throat swab, EKG, chest x-ray, urine analysis and was monitored for hours. The strong feeling would come over me while in the hospital bed. I was praying to God saying, “Please save me,” something must be terribly wrong. I was even telling my husband how much I loved him and how I had never been more scared in my life with this feeling.

Hours later the doctor came back in the room, he said the most bittersweet words I have ever heard in my life… “Everything looks fine, all your tests came back normal.” My face dropped and my heart fell into my stomach. I said… “Are you kidding me?” Why do I feel like my body is shutting down, why are my vitals acting like this? This isn’t “normal” for me! He went on to say he could see there was something wrong but he could not figure it out. He turned to me and said he didn’t know much about rheumatic diseases nor autoimmune but his best guess was that my own body was causing me to feel this way. He couldn’t see any other link at this time. He apologized and genuinely felt sorry. He stayed in the room brainstorming with me, offered me all these options, told me I could stay and be admitted but then I could put myself at risk for other issues that live in the hospital. I told him I agreed. The doctor went on and said get into your rheumatologist immediately and take steroids. He wished me well and told me if I needed to come back that was OK. I asked him if there was any way he could do more testing to see if my body was the culprit and he said unfortunately you must follow up with your rheumatologist and they couldn’t do that…

I felt broken, helpless, hopeless and scared. How can I feel so bad and no one in an ER can tell me what’s wrong? Though this wasn’t my first time with this experience, this wasn’t pain, this was my body feeling like it was going to shut down, and no one could help me.

Now the only choice I am left with is going on a search with my rheumatologist. I am not even sure if they can help me. I wonder if this terrible feeling will ever go away. If it doesn’t will I ever get an answer? I just want it to go away and never come back because this feeling is scary and the thought of trying to find another invisible illness is even scarier.

Community Voices

How Chronic Illness Makes Me Feel Insecure With My Marriage

Have you ever thought that one day you’d wake up and your life would completely change? Did you ever think that you might lose the person you once were? I know, I didn’t. I always saw myself as fun, spontaneous, and happy. If someone asked me to describe myself today, I couldn’t imagine using any of those words.

I was never ‘normal’, but I wasn’t this bad either. Though I would have to give myself credit for coming as far as I have since my official diagnosis. I couldn’t even imagine going back to where I was both physically or mentally.

But there is this other new feeling that has accompanied my diagnosis, it’s called ‘insecurity’. I can’t say I was ever 100% confident, but lately its almost down to zero.

I would say my biggest worry is my marriage. Not because he makes me feel that way. Its the way my mind makes me feel. Then I see other people’s experiences and I worry; a lot. For right now he seems content. But what if I can’t be that girl I once was? What if I won’t be able to be the girl of his dreams? What is the girl of his dreams is jumping out of an airplane and not someone who is “sick”?

He married me before my diagnosis. Before the bad got ugly. So far, he’s still around. But if one day he’s not? I find myself wanting to push more than I should just, so I don’t seem too ‘boring’. I think it’s good to have a push, but why do I have this fear?

When I met my husband, I was 16 years old. He was 18, and he loved being outdoors and never stood still. He wants to live in Colorado and all I can think of is how much pain that might cause me. I am scared of holding him back from his true potential and happiness.

Not only am I not as fun as I used to be… a part of me is gone. And I can’t say if she will ever come back; I’ve changed for better or for worse.

The pit in my stomach when I see another girl who in my eyes is ‘perfect, kills me that maybe one day I won’t be enough anymore. That all that is broken inside me will finally take its toll. That his answer to when I say, “Your better off without me, a girl like that, is what you need”, that his dreaded answer might be a “yes, you are right”.

I think my biggest fear is that I wouldn’t be able to breathe ever again. But I wouldn’t ever want him to settle or stay with me out of pity. He deserves his true happiness, even if it’s not with me. He deserves that tanned, beauty, adventurous girl who will hold his hand when jumps from that airplane in Colorado. The girl who can give him the children and family he has always wanted with no problem. A girl who is a whole, not broken.

I worry about the day, when this just isn’t enough anymore. When he might just turn around and walkaway. The day that my mind makes up each and every day, my nightmare comes true. I have loved him since the day I met him. He’s the only person I’ve ever really been with. I truly believe he holds my heart and soul. But he also holds the ability to break me into a million pieces. And I have absolutely no control over this. This is a scenario that plays in my mind. Its #Anxiety. But in the end what can I do? He hasn’t done anything wrong, I don’t have a reason NOT to trust him. All I have is, I know I have a fear and I hope that is never comes true.

Community Voices

How Depression And Anxiety Has Made Me Better

My life is a mess. I literally don’t know if I am coming or going… The problem is I can’t ever think back to a time where my life was anything but a disaster. As I’ve grown up, I truly thought I wasn’t affected by certain things in my childhood. Standing here today, I can tell you I was wrong, extremely wrong.

I am a strong believer that just because you didn’t have a “perfect” life growing up, doesn’t mean that your future can’t be. I don’t believe in blaming anyone else for my failures besides myself. I am an adult and I’m responsible for my own actions and my happiness.

The problem is, the past very much affects you today. Whether it’s made you stronger, wiser, or even messier. No, I don’t blame my parents for my anxiety and #Depression; but I can say the events in my childhood did bring out some of these issues. I have the choice to be happy, that power is within myself. But in those hard moments in life, it’s not easy to dig that out under all the rubble of my past.

I want with every bit of my body and soul to be strong minded, depression and free. I worry if I will ever be 100% free of it all. I am working towards this goal every single day of my life. Another valuable lesson I’ve learned is, one of the best investments you can do is – always work on being the best version of yourself; however that might be.

Ever since I was a child, I always felt so much. I always cared too much. Then I began to worry too much. From there I ended up crying too much. Everything simply became too much.

Because of this I see the world much different than most. My past has 110% shaped me into who I am today. Both my anxiety and depression have shaped my character today.

I love with all my heart, I don’t give up on people, I believe in those who don’t believe in themselves, I want to help the world, and I just feel so deeply. I am both sympathetic and empathetic.  I see every person important and see their value.  I am aware of feelings and seeing beyond what’s on the surface. I see the good, bad, and the ugly. I am way more gentle of a person and understanding of both sides of stories.

My mind is not black and white, it is all the shades and colors in between. Even though my #MentalHealth might not be the greatest; I am working on it! But I cannot go without saying I am thankful for person it has shaped me to be. Because without it, I am not sure who I would be today.

Community Voices

My Playlist For When Chronic Illness Gets Me Down

Ever since I was a little girl, I always loved music! Whether you could imagine this or not? I was in my middle school band and I could actually play several instruments. I was always so proud that I could read music and follow along. Even at the young of an age I was always moved by music. As I have grown and life has decided to chew me up and spit me back out a couple of times, I find myself even more drawn to music.

Maybe, its just me. But I truly feel this connection to songs and the lyrics of them. It sounds weird… but it is like I can actually feel the words. I can tell you so many songs make me feel all different types of emotions, while many make me cry.

As someone who suffers greatly from #ChronicIllness and #MentalHealth issues, some days I find myself struggling to want to keep going. I face challenges that make me question why I keep showing up to get pushed right back down?  This is not something I like to admit, but this struggle is one I see more often than I ever care to say.

I will be honest and let you know that some parts of my life can be scary! That I am pretty much scared most of the time… I mean, who wouldn’t be? It is constantly something, doctors visits, exams, scans, tests, ER visits, medications, side effects, reactions, waiting, being poked at, and more. Days turn into weeks, where the weeks turn into months of pure chaos in which there is basically no break from this pain. When times get really hard I find myself in darkness with no relief.

Although, I am here to tell you that when there is literally always something wrong with you, its frightening, you don’t even get finished with one obstacle before another comes crashing down! Specifically with my #Lupus, it is so hard to figure out what is exactly the problem. It messes up your body completely and brings its not-so-friendly friends with it.

I run into days where I need a reminder to find the strength within myself. I need to find ways to pick myself up even when I don’t want to. A reminder that I have come this far and I am not giving up. One of the greatest things I could ever have done is — make a playlist.

I know the sounds silly, but it helps me. This play list helps me find my strength and gives me a good cry when I need one. Believe me, I have to cry. If I don’t, its not good for me. We all have to let out the hurt, keeping it bottled in is not something I would recommend.

So here is my list, this is me sharing it with the world…

I hope this helps you keep fighting!

I pray it helps you get through whatever obstacle you are facing!

I want you see you get through this!

And I wish you could see how strong you really are.

Most of all, I hope when you face darkness, that you may also find the light.

If you have any songs that help you,  I would love to know! I would love to add some of your songs to my playlist! Let’s help one another out!

2 people are talking about this
Community Voices

My Open Letter To Lupus

Dear #Lupus,

I am writing to tell you that I want you out of my life! I am sick and tired of you interfering and wreaking havoc in my body. I hate the way you’ve changed my entire life! I hate the way I no longer do many of the things or activities I used to. I would really appreciate if you would stop preventing me from getting out of bed in the morning!

Could you be so kind and stop giving me pain in my joints that makes me feel as if I was 3 times my age? You really piss me off when I actually attempt to do something, and while I finally got brave enough to do it, you come in and hit me like a ton of bricks! At this point, I am completely over the constant fevers.

It breaks my heart when I see my body with more and more rashes. You make me cry when I see all the hair stuck in the shower drain so quickly. You make me feel depressed when I have to say “no” to my husband often because I don’t feel good. I have missed out on so many great things in my life because of you!

You embarrass me because there are times that I cannot hold a conversation or that I have been in car accidents due to the brain fog you give me. You really broke me down when I found that I probably won’t ever be able to have children. I no longer can enjoy the sun or have a drink.

Because of you I can’t stay awake during the day, yet I can’t fall asleep at night! You are making my family and friends think I am lazy, when I am not! I want to be able to walk without any trouble. I would love to spend more time out of my bed than in it!

There is just so much that you are doing wrong and I simply don’t know how much more I can handle. This is a battle that seems it can’t be won. I am trying to so hard to not give in. You are breaking me at my core!

You have become my worst enemy. I am not sure what I did for you to treat me this way…

But if I say, “I’m sorry”, will you please just leave me alone already? I know I am strong, but sometimes you make me insecure. Some days you even fool me and let me believe I’m winning. That’s what makes you so cruel.

P.S – I’m not giving up.

Sorry not so sorry,
Bianca Miranda

Community Voices

I’ve been really good with my anxiety for some time now... these past fee weeks have been SO bad 😰 new dx and new meds got me all freaked out. I’m hoping I can get it under control soon.

7 people are talking about this
Community Voices

I’ve been really good with my anxiety for some time now... these past fee weeks have been SO bad 😰 new dx and new meds got me all freaked out. I’m hoping I can get it under control soon.

7 people are talking about this
Community Voices

I’ve been really good with my anxiety for some time now... these past fee weeks have been SO bad 😰 new dx and new meds got me all freaked out. I’m hoping I can get it under control soon.

7 people are talking about this