Anemia, And Hearing Loss you say?

Happy-December-7

I survived Thanksgiving! This year was my first year with my tubes!! It was hard, but we kept it small this year, just my mom, my son and I. My mom made a crustless pumpkin pie for me, which was great. Keeping it small really meant alot. I was invited to spend it with my dad and his girlfriend, but I didn’t want to spend it trying to navigate eating or not eating in a group of people. Hopefully next year I’ll be pretty well adjusted!

Now I’ve had some hearing loss, it’s mixed hearing loss. Meaning both conductive and sensorineural. We have a small idea why i’m losing my hearing, which is from a genetic mutation I have. My ENT is great and is recommending hearing aids at this point, due to struggles i’m having with certain situations. It’s overwhelming. I can say how many take hearing for granted. We never know when or how things can change for us. We always think, “Not me”.. Don’t think that way. Despite it all, and how overwhelmed I have been, I have confidence that it’ll be ok. One way or another.

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Now my tubes have been a bit complicated. It’s been a lot of ER visits. Last week my G tube nearly fell out!!! WHAAAT! Luckily I caught it right before it fell all the way out. I spent hours in the ER making sure it was in the right position (I pushed it back in), and having them secure it until Interventional Radiology could replace it the next day. It seems my balloon popped! Now idea how, and it’s so weird. Luckily IR got me right in the next morning and replace it within 5 mins. YES! IR is the best! I’m finally working my way up to continuous feed. Which means 24/7. I’m hoping to increase my rate so I can disconnect for a few hours a day! Being attached to a feeding pump or iv pump is frustrating, but the alternative is far worse. In time i’ll get back in to a routine. My intestines are being sluggish, which is creating a new set of problems. I’m also now anemic. More bloodwork now to figure out why, and to determine how we fix it. Hopefully it’s an easy fix. We decided if it’s low iron, we’ll do iv iron, so we don’t run the risk of my not absorbing it if taken orally.

We don’t realize just how much is affected by digestion, or lack thereof. Many don’t think of vitamin deficiencies or not absorbing the right amount through eating vitamin rich foods. With my gastroparesis, I have absorption issues, which in turn creates vitamin deficiencies. I’ve been experiencing extreme fatigue, hair loss, pale skin, and horrible freezing cold hands/feet. I’ve tried to eat regular food, it’s left me really sick each time. It’s just not worth it, but how do you give up food? How do you get to the point of accepting this is life? Tube fed, and applesauce and pudding are what you can safely eat? It’s left me angry, but again, in time i’ll adjust and accept it more and more.

Let’s talk beauty. Let’s talk self esteem. You’ve all seen my posts about how i’ve struggled with my insecurities. I currently have a few things in the works behind the scenes. I can’t announce just what yet, but hopefully soon I can! I will say, I aim to inspire, encourage and uplift others. Regardless of what you battle, YOU are beautiful and worthy my dear little warrior! Once my channel and videos are posted, i’ll link it from my site!

Feeling attractive, loved, and worthy is all so hard while battling chronic illness. Battling your body daily just to do simple function leaves you exhausted. Learning to love your body, which sometimes feels like a prison is hard. I urge you to not give up, find what you love about yourself, find your strengths, find you. Never give up. I know at times it feels like you can’t go on, or it’s not worth the fight. It is! You ARE worth it. When people compliment you, don’t question it, don’t scoff or roll your eyes.  Accept it, believe it. If you ever need an ear, shoulder or just someone to vent to, reach out to me. If you feel all alone, reach out. There’s a community behind you, lifting you up.

 

Check-it-outHere’s my latest project! It is now LIVE!!!  Tubie Photoshoot

 

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Post-Op from Hell..But I’m ok

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It’s been an absolutely, ridiculously difficult post op.. The worst ever. Sometimes things just go awry! How can we plan for them? The best we can.

 

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Sloth GP Shirt I made, available in my store.

I had a laparotomy September 19th. I had no real choice. My GJ was failing, I was starving. The plan was simple. Go in, clean scar tissue from my 7 previous laparoscopies, and place my J tube.. The surgery was scheduled for 150 minutes. My mom said I was out in under an hour, and it took an additional TWO hours for me to even wake up from anesthesia… What a complete shit show. It turns out adhesions had formed to my GJ, which I didn’t even know was possible. We’re currently trying to find out why it was cut so short. Which makes me nervous. I was in the hospital for 4 days. The pain was absolutely unbearable at times. Imagine a 4″ incision going down your abdomen that pulls every time you sat up, laid down, or even tried to use the bathroom. It was rough.

I got home September 22. That night. We sent a text to my nurse the next day, as I was supposed to have wound care and my port accessed.. No reply. It turns out I was discharged by my home health agency with no word. No conversation, letter or anything. This set into motion so much stress. I’ve unfortunately had 5 post op ER visits due to possible infection, wound dehiscence, tube dislodged (twice), and pain post tube exchange.

 

I’ve suffered a wound dehiscence, which is when a wound opens up. My entire incision split open, even sections that were already healed. It’s been 6 weeks of strict cleaning, and routine to get it to close back up. 6 weeks of bandages, which sucks when you have an adhesive allergy. It’s finally looking better and like it’ll actually close up soon!!!

So since my agency let me go, it’s been weeks of trying to find a new agency, i’ve and no luck. I now have to travel 45 mins on Mondays to be accessed, so I can run my iv fluids. How utterly ridiculous.

I need things to go a little more smoothly. 🙂 Halloween was fun! We dressed up, took my son trick or treating. Just had a blast. He was a Ninja, I dressed as a devil! lol  I was in pain, but determined to not ruin my son’s Halloween!

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Halloween 2019

So it’s been about 6-6.5 months since I had my GJ placed. I’ve lost nearly 30lbs. We’re trying to stabilize my weight, which hasn’t been easy. I’m supposed to be connected to my pump 24 hours a day, or AT LEAST 18 hours a day. I’m supposed to be getting 1600 calories a day.. I’m barely connected 9 hours a day, and getting maybe 500 calories a day. This isn’t good at all. So I’m working really hard to increase my calorie intake and stabilize my weight. I’m currently about 158lbs now. Went from size 14, to about size 10. While my body looks amazing from the weight loss, I’m exhausted and constantly hungry. All this has left me malnourished, which isn’t helping me heal from surgery.

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Just a small snippet of the significant weight loss.

 

Through all this I’ve battled insecurities, my body, and stress. It’s been really heart wrenching. It’s really hard to go through all this, and not have the one person you want more than anything at your side. If you have someone that loves you flaws and all, don’t lose them. Don’t let your insecurities take over. Don’t lose sight of yourself or your relationship. Communicate your fears and feelings to each other. Don’t lose that.

I taught myself to convert bags to use for my feeing pump! That’s been fun! Below is a video of the bag I converted!

 

I’m working with a local photographer to get some projects done. I’m excited to show you all the final product! There’s more to come. More to say. More to do.

This post op has been difficult both physically, and mentally. Seeing the changes in my body has been really difficult. Realizing my GI system is slowing and we have no clue why, is scary. Dealing with a chronic illness is hard, dealing with multiple ones is so incredibly difficult. I’ll persevere. You are not your diagnosis. You are not your port, picc, or feeding tube. You are so worthy. You are so worthy of love, happiness and joy. Go after your dreams, most importantly Live… Don’t give up on life.

I’m always here you you guys. Always reach out to me if you need me. Much love to you all..

 

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I’m a unicorn…

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It’s summer time!!! Time for heat, beaches and pool! Summer is probably the worst time of the year for me due to the heat. It’s been quite the summer! So much as happened! Who else has a hard time during the summer? Anyone have any special plans this summer?

My son has been battling a post viral rash for the last two months. He actually tested positive for a past Epstein Barr Virus infection. Like Whoa! However, his rash, It’s finally gone!! Yay! Just in time for his surprise vacation! I can’t wait to post pictures from out trip! It’ll be so exciting.

It’s been a rough few months. My feeding tube has been problematic, or more my body has been. I’ve had reactions to the formula, bandages, gauze. It’s just been alot! Finally we’re doing pretty good. I’m still about 800-1000 calories short a day, but i’m slowly improving, however I still keep losing weight. My GI team is fairly positive I also have intestinal-paresis as well. Which just makes things even more fun..Not! Lactulose and I are buddies now! LOL  I got my Mic-Key GJ button last month, it’s been alright, the only thing is, I can’t vent my G-tube. Which really sucks. I’m also pretty much tube fed at this point. My body simply can’t tolerate any foods! I do try to get some ice cream a night though, as it’s one of the only things I can semi handle.

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Mic-Key GJ
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Weight Loss

As you can see, i’ve definitely lost a good amount of weight. I think i’m down 15-20lbs. And sadly still losing it. I’ll get it sorted, i’m determined!

Now, here’s a bit of good news!!! Living With Dys, has been nominated for a WEGO Health Award!! How exciting?! I, myself have been nominated for three, so that makes 4 nominations for me. I’m amazed at it all. I feel so honored and blessed. If you’re interested, check out my nominee page: https://awards.wegohealth.com/nominees/18307. IMG_0738

How great is this? What are your thoughts on it? What would you like to see more of?

I saw my geneticist Wednesday. I was not prepared for the results that I received. We did complete genome testing. It’s been about 5 months waiting for the results. Well, boy was I surprised, well kind of not really. My results showed I have a genetic mutation in the COL4A4 gene, which controls the Collagen Type IV basement membranes. I don’t just have a genetic mutation, I have the ONLY documented case of this variant. Literally the only one. I’m not even a zebra anymore, i’m a darn Unicorn. 246x0w My geneticist point blank told me, as of now, there is NO ONE to help me. No one knows what this mutation can cause, or what it can do. They’ve never seen it before. He’s advised me to seek out Duke and Johns Hopkins Research Department if they’d take me on as a patient. I did reach out to them this morning. It’s terrifying. Being told there’s no way to help you, that we don’t even know what’s going on or what can happen. It’s just overwhelming and so scary. I have low frequency hearing loss, and hearing loss is common with other variants of this gene. I’m being fitted on July 24th for hearing aids. I’m 33 and getting hearing aids… It’s just wow.  My rheumatologist, whom I absolutely adore, felt so bad that there’s nothing he can do to help. He still feels somehow MS is involved, he also mentioned Duke or Johns Hopkins is where I need to go. So if that’s where I have to go, that’s where i’ll go. What’s scarier to me, is it looks like I’m a carrier for this genetic mutation. My first question to my geneticist was,”How does this affect my son?” My son will have to be tested, as does my mom, to see if she has a milder version of a variant, or nothing at all. The change my son has this is overwhelming to me. It’s scary. I’m determined to become the absolute best advocate I can possibly be. I’m going to make noise, and i’m going to be heard. Someone has to be willing to listen and help me! Be ready y’all. It might get loud!

Yes.fit… who’s heard of it? They do virtual races. You do them on your own pace. It’s great. Cycle, walk, swim. Any steps or movement counts! I did one recently, and completed it. It was nerve wracking, and I did it completely at my own pace. We should definitely do one together! Motivate and empower each other! Who’s with me?!

Alright… Now I want to do a few live events, talks or chats. Who would like that?? My etsy store has also expanded. How exciting? New shirts, i’m focusing on empowering and positive messages!

In the midst of all this, I’ve been really struggling with my insecurities. It’s been very hard to see past them, and overcome them. My friends have been os supportive, it’s meant the world to me. My counselor has helped me to focus on positives and do thought stopping exercises. My tube doesn’t define me, it doesn’t change me. I lost sight of that. I’m slowly finding my way again. We often can lose sight of this when struggling, it’s important we focus on ourselves and self care. Feeding tubes, ports, Piccs, mobility aids don’t define us. Using them, having them doesn’t change our identity. Our identity is not rooted in our diagnosis. So many lose sight of that, so many let their diagnosis become their identity. Hope… we’ve lost it, let’s find it! join my facebook group, “Finding Hope”. Let’s lift each other up, and encourage each other!

 

Now my beautiful readers, Go Shine. Don’t let your sparkle dull. Be the absolutely best you, that you can be!!!!

End of the Year… Reflection

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I’ve spent the last week or so reflecting on my year. My 2018 started out promising..it seemed to have spiraled a bit!

January was interesting. It was probably when I first started having doubt about getting married. By March, I was thinking of my ex boyfriend, dreaming of him more often, and really started second guessing the wedding. Though I pushed forward. My health was up and down. Dealing with Emergency laparoscopy in May, then a HUGE HIPPA violation at the hospital post-op. Which left me reeling, and extremely upset. May brought me un June, and my proteins levels in my urine were climbing, thus an emergency renal biopsy was done! This led to the discovery of my  having Thin Basement Membrane Disease. My nephrologist put me back on iv fluids, lactated ringers to be precise, 3 times a week.

The summer was busy with wedding stuff and keeping my son entertained. Dealing with my health and exhaustion. Spending time with my son. August prepared us for Back to School. August was the start of the spiral. I ended up canceling my wedding. Ending my engagement. So much has happened since then.  In, September I reconnected with someone from my past, someone whom I’ve loved for 7 years. October, November led to may seeing him for the first time in 5 years. What an emotional moment that was. It had to happen though, we both needed to see each other, say what we both needed to say to the other that we never got the chance to.  December led to health concerns, reconnecting with love, but most importantly time for reflections. It also led to my starting therapy. Therapy has been a godsend for me. It’s allowed me to really work through my emotions, and process it all. It’s a safe place for me to just unload my concerns, emotions and everything.

December also led to my son being diagnosed with Autism Spectrum Disorder, High Functioning. We suspected it, having some answers has been amazing, but learning and navigating things with him is hard. I’m determined to learn all can, and find ways to help him be the best him he can be!!! We attended a football and hockey game! He’s starting soccer, he’s excited, but he’s also well aware of how overwhelmed he can get. We’re trying to find techniques for him, to make things a bit easier. It’s a learning process, we’ll get through it.

I’ve spent the last few months reflecting so much. Reflecting why I made the decision I did all those years ago. I’ve thought that maybe I should leave again, maybe he deserves someone worthy, someone not sick.  I don’t want to be a burden. I’ve struggled with depression the last few months, especially the last month. Christmas was hard, for emotional and financial reasons. There’s days I feel like a failure as a mom. There’s days I cry at all I have to deal with. Days I feel like a failure as a girlfriend. My biggest biggest thing, is my self esteem. it’s such a struggle some days. There’s times I feel absolutely stunning, and others I’m like “WTF, what does he see in me?”… He tells me every day i’m beautiful, but he said this: “It doesn’t matter how much I say it, until YOU believe it for yourself”. How right he is, no matter how much he tells me i’m beautiful, it won’t matter unless I start to see it and believe it! My depression is sinking, it’s swirling around me. I sit here and cry wondering how I left 5 years ago, how I walked away from someone that loved me so unconditionally. I’ve become stuck in that loop. Instead of seeing he’s here, he’s still loving me, i’m stuck in the why, i’m stuck on the feeling like an annoyance, feeling like a burden. I know i’m not, but sometimes, in that moment it’s hard to see past it. It’s a struggle lately, a struggle sometimes I can’t overcome.  I refuse to walk away again, no matter how string the fear is, no matter how scared I am. I can’t walk away from him again. If I do, i’ll lose him forever, i’ll lose my heart.

This year was full of struggles, full of hard decisions I had to make. Full of trials and tribulations, tears of pain, tears of laughter, tears of love. Ending my engagement, but finding my way back to someone I loved so fiercely, it’s scary.  I’m working to let it all go. I can’t control everything, I can’t control the future. What I can control, is myself, my feelings, my reactions. I control me. I am choosing to let go of my insecurities, to let go of my fears. I’m ending 2018, i’m ready to let it all go. Let all the hell of this past year go. Let the self esteem struggles go. I’m choosing to wake up tomorrow, Jan. 1, refreshed, and on a new page for the next chapter of my life. I’m choosing to live, to be happy, to be loved! I’m choosing to let go of negativity, to let go of those that don’t bother in my life. I’m choosing to surround myself with supportive, loving, understanding people. I’m writing my story, i’m sharing my soul. For I have so much I wish to do, I refuse to be held back any longer by my fears or my insecurities.

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2019 is going to be my year. My year for laughter, for friendships, for love, for inspiring others, for travel. 2019 is going to be the year I decide to move past the fear, and fully embrace who I am, fully embrace the past that I can’t change, fully embrace the future that is yet to happen. I am choosing to end 2018 by letting it all go. I choose to follow my path, be positive, happy and loved! I am choosing to let go and let God. If I don’t let go of the fear, I won’t live. I won’t accomplish anything I wish to, for the fear is holding me back.

I’m loved, i’m blessed, and without a doubt, you all are loved as well. You’re never alone. If you ever feel that way, reach out to me, I will listen. I will be here. Together we can build each other up.

Be you! Be Fierce, but most importantly, be true to yourself. Never give up your hopes and dreams. Lets all start 2019 off full of hope, full of dreams.  My story is just starting…stay tuned…

 

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Facing my Past, My Heart

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My last post I mentioned about the story I wan’t ready to share…Today i’ll share that story.

Seven years ago I met a man that would unravel my world. This man, He awoke a part  of me that I didn’t know existed..

He was there every step of the way.  From the very beginning of my health failing, he was there. We grew closer, we grew to love one another. We always laughed, we always touched. We always had to touch. He was everything to me. Our love was on a level I’ve never witnessed or felt before.  I opened up in a way I never had, just as he did to me. He held this aura about him. He took care of me in a way i’ve never experienced. My last relationship, i’d been so used to hurtful words, insults. This caring, and loving, I wasn’t used to it. I didn’t know how to act, how to handle it. (This is important). I loved the way he was there, he was my partner in all ways. See, everyone knew of the love we had, everyone knew what we had was on a level rarely seen. We were “Noah & Allie”.. we were a perfect match, in every way. He challenged me, encouraged me, supported me in every way.  It was him that convinced me to write my journey. It was him that encouraged me to go back to school.  

We grew so close, so quickly. We became so important to each other. We needed each other. We loved one another in a way that’s once in a life time. In December 2011, I collapsed while at work. Something was wrong with my heart. I was scared. I remember calling him as I was being loaded into the ambulance. Something was wrong, and I didn’t know what it was. We found out, I had SVT, and I had hit nearly 200 bpm.. My life now consisted of doctor appointments, tests, and medications to control it. In January nothing was working. I was rushed into surgery, a cardiac ablation. He held my hand as I waited to go back. He and my mom were with me. He was always there. Waking up in recovery, seeing him still there, was a relief. We hoped the surgery would be a success. We prayed. By middle February I was collapsing, I was short of breath. It turned out, the surgery didn’t work. I was rushed back in for another surgery. This time, I was getting a pacemaker. As a result of missing so much work, I lost my job. I didn’t know what to do. My mom lived 6 hours away. My dad was in Florida, and here I’m in Virginia. Unfortunately we couldn’t move in together at that time. What was I to do???  My guy, He thought of a plan. His plan, I should move in with my dad. Better doctors for me, better medical care. I didn’t want to. I was so scared… Losing him, it wasn’t an option. Losing him would be like losing part of myself. Though, I knew he was right. If I stayed in Virginia, I’d deteriorate. With a heavy heart, I packed my apartment, hired a moving truck. Started the long drive to my dad’s house In March 2012. Moving back in with my dad was hard. I was 25, with a child. I shouldn’t be back here.

The next year and a half we traveled to see each other. He always made time for me. Our last trip was life changing. That trip led to me making a decisions that affected us both. There was no discussion. There was nothing. There was me making the decision..  As I recall the memories, my heart aches. Sadly, my decision was that I walked away.. 5 years ago I walked away from someone that meant the world to me. 5 years ago, I ripped my heart in two. The pain, the heartache was soul crushing. Losing him, through my fears, my insecurities was hell. He had no idea why I walked away. He didn’t know the last time I saw him would be the last time. He didn’t know the fear that was in my mind, in my heart. Instead of talking to him, like we always promised to do, I simply turned my back and walked away. Destroying both myself and him in the process. He reached out to me repeatedly, for months, for years.. I ignored him. I didn’t listen. I couldn’t cope. Instead I buried it all. I buried all my emotions for him. I buried my confidence, my strength, my personality. Essentially, I buried myself.

Did it work?? Somewhat.. every day I thought of him. Every day it ate at me. Every night the dreams, the memories haunted me. The regret i’ve held is immense. He reached out to me a year ago in June 2017. I was at my best friend Jen’s house.. I got an email from him, read it and couldn’t cope. Jen tried to get me to email back, to listen to him, to talk to him. I couldn’t. I refused.

I tried to move on. I tried to bury my love for him. I tried to bury myself. I did a good job too, until it all blew up in my face. After ending my engagement, I thought of him. I needed to talk to him I needed him to know I almost made a mistake. I felt this overwhelming need to talk to him.

On what would have been my wedding day, I finally typed that reply to him… after 5 years. My heart pounded. Would he reply? Would he ignore me, as I ignored him. It took nearly 11 hours for a reply. After that reply, 3 hours after that we were on the phone. When I answered that call, it was emotional. It was instant tears.  There’s no way to describe what I felt. There’s no way to describe what I felt for him. “Hey you”..was all it took to unravel the carefully constructed walls around my heart… “Hey you” was all it took, for every memory to flood me, for every emotion to pour into me, for every “I love you” to fly back into my mind. My world unraveled that night. But really..it unraveled 7 yeas ago when we met.. 7 years ago when I said “I love you” after he brought me donuts to my office, and I said it for the first time. 

That night.. We talked, I mean really talked. Losing me nearly destroyed him, just as my losing him nearly destroyed me. That phone call shook my entire foundation.  I cried, yelled, raged once we hung up. My mom held me on the ground as I cried, letting 5 years of anger, betrayal, longing, regret and love out.. The rage, the resentment, the regrets I’ve held. I still hold. He asked me why.. why did I leave? This answer isn’t an easy one, but here it is.

I let my health be a part of the reason I walked away. How do you walk away from someone that means so much to you?? Let me tell you, it isn’t easy. It’s painful. It’s emotional, it’s rage it’s overwhelming fear. I knew my health issues, weren’t an issue to him. He cared about me, and wanted me, regardless of whatever health issues I had. He was caring, loving, supportive. I’d never experienced that. It scared me. I didn’t know how to cope. This love, this supportiveness, this encouraging partner, I didn’t think I deserved it. I didn’t think I was worthy. I didn’t want to be a burden to him, I didn’t want to hold him back. So, I simply walked away. Hurting both of us in the process.

We’ve talked every day since we reconnected. He knows me better than I know myself. Even after all this time. I wondered, If we saw each other, will it have fizzled, or will it all still be there, but stronger. Well i’ll tell you… It’s still there. Stronger than ever. Seeing him after all these years was emotional. Being in his arms again, was liking coming home. Hearing him tell me what losing me did to him, made me sob. This big, strong man loved me sooo fiercely. He stills loves me. This man, even after I left, continued to love me, continued to have hope that i’d come back.  It took me a while, but I came back.

I don’t know what the future holds. What I do know, is i’m not running again. I’m not walking away this time. I’m standing firm, facing him and all these emotions head on.. I know what we had..what we could have.. It’s something others dream of.. He was my one… 5 years later, we’ve found our way back… As much as losing each other hurt, I think we needed that time.. We needed to grow as individuals, before we could grow as a couple..I needed to know my worth.  I think it was the right person, just the wrong time. We faced so many obstacles at that time.. He’s never been far from my mind, he’s never been far from my heart.

I’ve spent the lat two months doing so much reflection. So much thinking. So much realization. Realizing I hid my dreams, my goals.. I hid myself for the last 2 years..Well technically the last 5 years. Why?? Why did I bury myself? Why did I lose myself? The fury, the rage took hold of me.. I gave up so much of myself. I lost so much of who I am.. Who I was.. I want me back. I want to be me again. Bright, confident, happy. I’m working on rebuilding who I am. Rebuilding my strength, my confidence. I’m going to rebuild myself stronger. I’m chasing my dreams, my hopes. I’m not giving up. Not this time.

I am beautiful, I am strong, I am a warrior. I won’t ever lose sight of myself again, for i’m rising from the ashes of who I was, to become who i’m meant to be. Stay tuned, for this warrior is just rising from the ashes and will be stronger than ever.

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Now I choose to live…

**Trigger warning. **

 

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The past month and a half has been incredibly difficult. I was supposed to get married, but things were called off. They should have been months ago… Ending a 2 year relationship and engagement wasn’t easy. However, the warning signs were there. The red flags were waving. I ignored them till i couldn’t anymore.  I made the best decision for myself and my son. I will not crumble or yield. I will not apologize for making the decision i did. I didn’t ask for emotional abuse or manipulative behavior, and I sure as hell won’t put up with it.   At first I was angry.. Now, I’m ok. I’m at peace with my choice, it’s been months in the making. I shouldn’t have let it get so far. My choice was the only one to make.  I know there’s anger on his side, but I needed to do what’s best for my son and I. I won’t apologize for that.

Emotional abuse is hell. Manipulative behavior is hell. Being made to walk on eggshells day after day so you don’t set them off, is hell. Suicide threats when things go south, or not getting his way.  I can’t live like that, I shouldn’t feel guilty for my feelings. But I was made to feel guilty. Constantly apologizing, constantly on edge watching what I say. I couldn’t be honest, because it turned into an argument, all the time.  Not to say we didn’t have good times, because we did. We had a lot of them, but those don’t outweigh the red flags. They don’t outweigh the potential for things to go so bad, so quickly. Sadly, they did. It was toxic. There was no fixing it. Lies and Deceit, and anger have no place in my life.  I put on a fake smile, and on facebook everything seemed perfect. Everything seemed fine… However a few were able to see past the facade I had in place. They saw behind the mask I wore.

His actions, and the stress led me to having a drink, then another. The first time in 10 years.. That night a phone call gave me a wake up call. (no one was injured. Just a blast from the past) That person knows me better than anyone else. He immediately understood my struggle, he understood my pain. He made me realize that this slip..it’s not me. I allowed someone else’s actions to break me. To break my strength. And that is utter bullshit. Two more nights, one drink each night.. Two more nights… I realized, while staring at my wedding gown that this..this relationship had been toxic. That I hid who I was. I let my strength die. My inner light dim. My friend caught onto it all. He reminded me of my strength, of who I am. Who and What I can be. He reminded me of the Phoenix within me. The power I always held. The dreams and hopes i’d always had.

My life has been difficult the last few years. Between my health, and other personal issues. My health has led to insecurities, and fear. It’s led to anxiety and depression. Through it all, I forgot to live. I just merely existed. I tabled my dreams, my goals, my ambitions, my faith and my hope.. Why?? Why did I do that?? Why did I hide part of myself? Why did I feel the need to?? There’s so many reasons. Reasons i’m not ready to share yet. Perhaps soon. I’m at a point where i’m almost ready to share it.. To bare that piece of my soul.

For now though, now i’m tired of just existing. I’m tired of not living!! I’m tired of being prisoner to my body! I’m tired of tabling my hopes and dreams. I’m tired of hiding who I am, so I don’t intimidate anyone. No more, More more will I just merely exist. I’m choosing to live. I’m choosing to travel. To love..oh to love fiercely… To smile.. Most importantly, to be happy! I’m choosing to not just exist. I’m going to live life to the fullest. I have faith, and hope.. With those anything is possible.

 

#imaphoenix, #spoonie, #emotionalabuse, #imstronger #iknowmyworth, #dontignorethesigns

 

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I’m back… again!

Hello my dear readers and friends! I know it’s been quite some time since I’ve written, and I’m sorry. I was not well, and had to take time to at least wrap my head around things surrounding my health.

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On August 19, 2014 I sent my sweet baby boy to Kindergarten!!! He’s such a big boy now! He tells me that he is, and loves “big boy” school. He started school the day after I was released from the hospital for the picc line infection. I refused to miss his first day of school!! Yes, I’m a proud mama!!!

First Day of Kindergarten!
First Day of Kindergarten!
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My baby boy and I

In September my cardiologist in Virginia had another one placed, my doctor in Florida removed it feeling it was a serious risk. At that point I was so overwhelmed and angry that my neuro would no longer order the saline, that I was ok with it. I started physical therapy to help with my strength, it helped slightly, but mainly left me exhausted and in pain. I sprained my MCLs at the end of August, which required me to wear two knee braces, the sprains were so severe I have to wear these braces ALL THE TIME! I hated them, and didn’t really wear them. Bad girl, I know! this led to bursitis around my knee and required me to get the corticosteroids in my knees. Unfortunately I had to get it in my SI joint as well due to major issues there. Such is life! lol  I also had an Echo done, and it showed an enlarged heart, as well as mitral, tricuspid, and pulmonic regurgitation. My cardio in Virginia is keeping it monitored very closely.

October brought it’s own set of issues, as well as fun Halloween time!! I didn’t do so well in school because I wasn’t feeling so well and couldn’t keep up with the course work. It’s awful, but it’s not exactly a shocking development! My son decided to be Flash for Halloween, which meant I had to be Batgirl…… Oh yes, I’m THAT mom! lol We went trick or treating with friends, and had an amazing time.  Which makes it all worth it!!

November brought some difficulties with me getting around and keeping my energy up, but I was ok. Thanksgiving sucked. I unfortunately had full body tremors and was passing out… again a wonderful holiday ruined by my health. I cried, and had to be carried to my couch, and to the bathroom. Dysautonomia, you suck! But dinner was yummy!! I also had the Mirena IUD placed.. boy was that painful!

December is when things fell apart. I started having major pre syncope, and passing out. I became unable to keep my blood pressure up. It crashed more often than not. Eating became a bigger challenge. My mom flew down and drove us to her house in Tennessee. I basically slept the entire way. I couldn’t rally do anything else.

January, my life crashed. I could no longer control my blood pressure, and was constantly dizzy. My energy was non existent. I slept nearly all the time. And I still wasn’t really eating. What I did eat, didn’t stay in me for long. My neuro here in Florida didn’t know what to do with me. She pretty much threw her hands up and told me that I DID NOT have dysautonomia. Which I found interesting because TWO other hospitals confirmed the diagnosis, and why didn’t she say anything in the last TWO year she was treating me for it?!  I found a neuro in Tampa that knows dysautonomia. I saw him at the end of January, and he ordered all new tests.  My sister drove me to my appointments, and for that i’m so grateful. My appointment for testing was last week. The tests confirmed that I do indeed have dysautonomia. He also said that my neuropathy is so severe in my legs that it’s affecting the blood flow to my feet, which is why they’re always freezing cold. He decided not to even try the Florinef or midodrine again as I had such bad reactions to them… He decided to go straight to IV saline… which means, another IV, which means a picc line or a port. I’m opting for the port. He has hope that this will help tremendously. I know it will help some.  This month has been incredibly difficult as I have no energy, and no appetite. I’m rarely hungry and when I am hungry I barely eat anything. My dizziness is so bad. My mirena has cause extreme pain. Today I learned that I have several ovarian cysts and pelvic fluid. The doctor ordered a CT scan, which is being done Friday. I’m hoping this is nothing major. I’m hoping it’s not Endometriosis rearing it’s ugly head again. I’m hoping for so many things.

I know at times we all feel helpless, angry, grieving, depressed. We must not let these feelings consume us. I know it’d be easy to let them, but we need to remember our fight, our inner strength. We’ve made it this far, we can make it even farther and face all  that comes toward us. Remember you are loved, you are worth it, and you are beautiful and amazing, but most of all remember you are not alone in this fight!! We’re all warriors, we’re all a family!

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Saline and me..we’re friends :-)

So a month has gone by without an update… Don’t be mad my loving followers!! I went to a conference in Washington DC hosted by Dysautonomia International. I met so many people, and learned a lot.

It seems the “experts” are against saline therapy, fearing addiction to it… Seriously?? My electrophysiologist laughed at this, as did many of us POTS patients at the conference. It was an informative conference, however they really only focused on one type of Dysautonomia. I was told by an “expert” that I needed to have my picc line removed as it’s offensive to people, and that I needed to cover it up for Lobby Day. I took an immediate offense to this. When morning dawned for Lobby Day, I was completely bedridden. The weekend of the conference was so full of informative sessions, it was hard on me to keep up, it was hard on a lot of us to keep up. I couldn’t attend Lobby Day because my body had had enough. I flew in on a Friday, and left on the following Tuesday. Two days of flights, and two action packed days of sessions. My body was exhausted. I ended up having to do a saline infusion just to get myself to the airport on Tuesday! lol

 

First night of Dysautonomia International Conference
First night of Dysautonomia International Conference
Day 2 of conference with custom cup by Jilly's Decals
Day 2 of conference with custom cup by Jilly’s Decals
Day 3 of Conference
Day 3 of Conference

 

Once I got home, it took almost two weeks to recover. When my neurologist decided to extend out my infusions over the next 6 months, things happened that should never have happened. My nurse was changed, so I was assigned to a new nurse. The new nurse, when meeting me for the first time, decided to make her thoughts known on my saline treatments. She stated that I need to force fluids down my throat and have my picc line removed. On top of that I was allergic to the bandage she was using. I told her as much. She used it anyway, this was on a Monday. By Wednesday the bandage was falling off. When she came to check it, she didn’t even change the bandage. I had to tape it to my arm for another 5 days!! She also didn’t use gloves when changing my bandage, this set me off. I called the office to complain. When I experienced pain over the weekend, I had to call the on call service. I was told my the on call nurse to deal with it or go to the ER.. Seriously? When I called Monday to file a complaint, the lady that answered the phone told me that the nurse I spoke to on Saturday evening would never tell me that. That’s how they handle the situation? The nurse came Monday, and proceeded to make snide remark after snide remark! Saying “Oh are you going to report me for that too?” Unacceptable!!! I didn’t even call the agency again, I called my insurance company and filed a complaint. Upon speaking with my insurance company, I was told the agency was sending a new nurse. She came on Friday evening. She asked personal questions that she had no business asking. She pushed the subject. Made comments about my having a son and not being married, saying I’m a single mom with a tone of disgust to her voice. She told me “You need to make better choices for yourself and your son young lady!”  WHO THE EFF does she think she is to speak to me that way?! To say this in front of my son?! Hell No!! My dad overheard this and said it’s time to leave. He was in shock!!  The agency will be fired in the morning!!

On a lighter note, I’ve been blessed with two amazing friends for the last few months. My friends Amanda and Maria, have become such amazing friends to me. They’re truly been there when I needed a swift kick, or when i’m just feeling down, or when I need girl time!! I’m so glad we met, and formed such a friendship.

Maria, Me and Amanda
Maria, Me and Amanda

 

My saline therapy has been helping, unfortunately having an allergic reaction to the bandages isn’t helping. My EP is going to consult with my Neuro to do a port. I’m scared, but this is my life. This is what I need to stay hydrated and have less palpitations! I’ll do it! I’ve been having presyncope more often, as well as horrible vertigo and getting car sick. I’m trying to find things to help combat them both. 🙂  I’ve also been diagnosed with arthritis. My scoliosis is also worsening. I’m pushing through to stay positive about life!

Love, isn’t that something we all want? Those that have it are truly blessed. Loving someone so completely and without judgment is a beautiful thing. You never know what tomorrow holds. You never know if you’ll hear their voice again, or see them again. Cherish them. Cherish every memory you make together, for that love is so precious, and so rare. Look back on the memories, not with sadness, but with joy, and love. Joy that you experienced that, love that you had for that person. Sorrow can also be present, but don’t let it overwhelm you. Don’t drown in the sorrow, and memories. Live, love and cherish your time together, for you never know when you could lose it.

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