Let’s Talk Endometriosis..

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March is Endometriosis Awareness Month.. So let’s talk about it. What Exactly is it?

Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.  Mayo Clinic- Endometriosis

Now that we know what it is, let’s talk about it. I was diagnosed with it at 15/16. I was told I would probably never have kids. I remember sitting in the doctors office, the doctor telling me at 16, I’d probably never have children. I remember feeling so heartbroken, angry and confused. Why? Why was this being told to me. I didn’t understand at the time. No one really explained any of this to me. Soon i’d find out just what it all meant.

I had been rushed into emergency surgery in 2003, I was 17 years old. I had an ovarian cyst that had ruptured. While in surgery they removed my appendix, since most doctors were dismissing my pain as appendicitis. This surgery started what would become the “norm” for me. Another surgery revealed I was at Stage 4 at 18 yrs old. Unfortunately this wasn’t documented well by the doctor then. All we knew was that it was “everywhere”. We tried Lupron Depot, birth control. Various treatments to manage my symptoms and pain. Which just seemed to worsen each month. Lupron depot made it so I no longer had a menstrual cycle. This way they could manage the pain a bit better, unfortunately this led to other side effects from this medication, which is actually classified as a Chemotherapy medication. Here I was 18-20 and in menopause, on “chemo”. My life consisted of painful periods and doctors appointments.

My mom and I began to research. We found an amazing team of doctors in Atlanta at the Center for Endometriosis. I submitted a lot of medical records, and received word I would be taken as a patient. So off we went. Another appointment. Another doctor. This time though, we had hope. I was going to the best of the best. Little did we know just how things would go.

The consultation was overwhelming. I was basically informed i’d need another surgery. We prepared, we made plans. Traveling back and forth from South Florida to Atlanta wasn’t easy, but my mom made it happen. I was 20 years old, supposed to be in college and my periods were so bad I couldn’t function during that time. I remember my mom and I having the discussion. Me saying, “don’t let them take everything. I want a chance to have a baby later in life.” We expressed this to my doctors, Dr. Sinervo and Dr. Albee. They were aware of my fears, my anxieties, my desire to be a mom. They assured me they would do all they could. That day… that day is forever etched in my mind. Waking up in my hospital room. My mom sitting there, waiting for me to come out of the anesthesia. I looked at her, saw that she’d been crying. I asked her, “I lost them didn’t I? You took them out?”. I screamed, yelled and cried. Not only out of pain but heartbreak. She held me as I cried, as I mourned the loss. It may sound silly to some, but to me it was heartbreaking. She told me my entire right side was covered in endometriosis. The worst case they’d seen in someone my age. I had it on my right ovary, fallopian tube, intestines, pelvic wall. It was in a sense everywhere in my pelvic area. My mom had to make the decision for me, she had to make the decision to remove organs. Make the decision for her 20 year old daughter about her future. She agreed with my surgeons, remove the right side. So at 20 years old I had a unilateral salpingo-oophorectomy. This means, my right ovary and fallopian tube were removed. They did this to remove the endometriosis, to buy me time.

I then had to have a LEEP procedure due to pre-cancer cells found on my cervix.. Then.. then a miracle happens.. I end up pregnant in 2008. It was a shock, lots of crying. For 9 months there was no endo pain. No hellish periods.. It was glorious!

My son is now 10, he’ll be 11 in April. I’m 33 and I still battle endometriosis. I’ve battled it for 18 years, I’ve had 6 surgeries in total for it. My last one was in May 2018. They found two endometriomas in my left ovary. Once again my doctor did all he could to give me a chance to have another child. I’m once again at Stage 3. We’re considering reaching back out to the Center for Endometriosis Care. I need another surgery, however after 8 abdominal surgeries, they’re waiting until it’s absolute necessity.  I’ve had severe scar tissue. Scar tissue and adhesions on various organs, in various places. Scar tissue that made placing my feeding tubes, very difficult. It turns out the severity of my endometriosis has created quite the problems in my pelvic area. Intestines are fused together, bowel issues, bladder issues. Things you wouldn’t think about endometriosis affecting, but it has far reaching consequences. Even with my J tube, there’s damage from my endometriosis. They’re saying “frozen pelvis”. It’s horrific to realize just how damaging endometriosis is, and how little it’s explained.

I’m in pelvic floor physical therapy to help with various symptoms from my endo. I have trouble going to the bathroom, both #1 and #2. This is being attributed in part to my endo. Horrific menstrual cycle pain. Every month i’m out of commission for a few days. I’ve tried birth control, sadly they just make my cycle last for weeks, which I can’t cope with. Pain with intercourse, pain with bowel movement, pain with movement in general at times.. These are things rarely discussed or acknowledged by some doctors. Things that are often dismissed. I’m hopeful that Pelvic Floor PT can help, if anything, may be it can help with going to the bathroom. Or help with the pain. Even in some small way would be appreciated.

Knowing i’m running out of time, knowing that each month my pain and periods are absolutely horrendous, knowing I need more surgeries for my endometriosis, it gets to me. Sometimes I debate if it’s time for a hysterectomy. I begin to accept that fate, then it becomes too overwhelming for me. Too much, too soon. I know that’s my eventuality. I know that is what I will end up needing, but how do you mentally prepare for that? How do you mentally prepare for no longer being able to conceive? It’s not easy. In 2019 it was discovered I have a hydrosalpinx. Meaning my only remaining tube is blocked. I have to see a fertility specialist to see just how blocked. I haven’t prepared myself for that yet. I can’t determine which would be easier, just doing the hysterectomy and giving up, or trying with the fertility doctor, and having hope. How do you make that decision? It’s incredibly difficult to make.

The emotional damage from my salpingo-oophorectomy was immense.  I felt like less of a woman. I felt broken, damaged. I wanted to be a mother, and here i’m facing that I would probably never be a mom by natural ways. Depression, anxiety it was there. I had to work through the pain, not just physically, but emotionally as well. That’s what no one tells you about endometriosis. Yes physically the pain is unbearable, but emotionally, it’s unbearable at times. No one talks about the mental and emotional aspect of living with endometriosis. I’m not sure why, is it taboo? It needs to NOT be. It needs to be discussed. Women struggle with both aspects of pain. Let’s be there for them. Endometriosis is hell. It’s physically and emotionally painful. It robs women of their joy, their lives, even motherhood.. their hopes of motherhood are dashed at times due to their pain, or severity.  It can affect relationships. It can damage them. We feel inadequate. We wonder why our partner stays, we wonder how a new partner will feel when they find out you may not be able to conceive. Don’t push your partner away. Communicate your feelings, your fears with them. Lean on them. Let them help you face this.

The feeling of being unworthy due to being infertile, or due to the struggle and pain with your endo. The feeling can be so overwhelming, so soul crushing you can’t breathe. You scream; “Why”, you beg and plead. You try to grasp this, try to grasp how this happened. You feel alone, broken, scared, angry. I assure you, you’re not alone. You’re not broken. You’re not less than, you’re not inadequate. You’re not unworthy. It’s ok to be angry, it’s ok to be scared. You’re worthy of love. So damn worthy. Just know you have a community of women behind you lifting you up in your time of pain. We are here, we will help you shoulder this. We are a sisterhood. We are a community. We are fighters with hope for a cure.

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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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From a Spouse’s Perspective

 

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Last night as I sat reading an article on The Mighty, about partners of those that are chronically ill, I was hit with curiosity.  We hear so much of how being chronically ill affects us, but how does it affect our partners? How do they feel? What is this like from their perspective??   I quickly sent a text to my boyfriend, I explained I wanted to write a piece, essentially from his perspective. He said he’d love to help me. So, I sat down, typed out some questions and emailed them to him late last night. By 7:30am I had his replies.

Let me preface with this, we met in September 2011. He was there from day 1 when all of this started.

Without Further Ado,

From a Souse/Partner’s Perspective:

1) When at first when my health deteriorated, how did you handle or adjust to that?
I handled it like every other day and I don’t feel like I had to make any adjustments that I didn’t want to make on my own.
2) Did/Do you ever feel overwhelmed? If so, how did you deal with it?  
I never feel overwhelmed personally, but I do feel bad that you get stuck, probed and prodded regularly by nurses, and doctors. You’re shuffled from specialist to specialist, all while hoping for answers. 
3) Have you ever felt helpless? Being my partner and unable to fight off this monster of a disease.
No I don’t feel helpless because you’re the strongest person I know and if anybody can get through this, you can. 
4) What is the hardest thing you’ve had to face in dealing with my health?
I would say the pacemaker scared the living hell out of me. That’s dealing with the heart, so many risks with that. It was kind of hard to handle but you amazed me with how you handled it like a champ.
5) Do you prefer when I shield you from the bad days, or disease progression? Or do you want the truth of how things are?
I want the truth about how things are, no matter what, your love and well being are my first priority.
6) What is your biggest frustration in dealing with my health?
My biggest frustration in dealing with your health is that sometimes your attitude on life gets to me. The eating/drinking issues, you won’t do it some days because you know how sick you’ll be after. So you don’t want to do it. That you won’t do the feeding tube, even though you need it. You let your family talk you out of doing what your doctors suggest. You also don’t see yourself as beautiful, you feel like the feeding tube, will make you less beautiful to me.  Scars, or a feeding tube won’t make me love you any less, or see you any less beautiful and amazing. That’s really frustrating for me. 
7) Being a caregiver to your girlfriend, have you ever resented the role?
I never resented the role. It’s a role that I choose to be in, because I love you. 
8) If you could tell me anything about how you’ve seen my struggle with my body, what would it be??
Nothing, your body is flawless. Scars tell stories and you have a lot of stories to be told. Your never ending strength is amazing to witness. 
9) What’s the most vivid memory you have of dealing with all this?What memory sticks out the most?
The day you got your walker. I felt you used it as an excuse to give up on physical therapy, of getting better, stronger.. You have problems walking yes, you tire easily, but I could see that you wanted to give up, instead of pushing through to overcome it. That was hard for me to see. 
10) What’s the hardest thing you’ve had to deal with in regards to watching me struggle with my health?
When your self esteem drops. You’ve grown stronger in who you are, you’ve found your inner strength, your voice. You inspire people with your words, and your realness.  However, Nothing about YOU has changed, you’re the same person you were when I met you. You don’t see the beauty I see when I look at you.  That’s hard for me, that you don’t see what I see, what others see. 
11) If there was anything you could change about my health or how I see things, what would it be?
Your health does not bother me, but how you see things does. Open your eyes, look around, you have a lot to live for. You have a lot to be happy about. 
12) Have you ever wanted to walk away, leave? 
I didn’t think that was an option. A real man or woman would stand next to their partner no matter what.  
13) If you could give spouses/partners new to this any advice, what would it be? 
Work hard with what you got, and above all find happiness and peace within yourself.
Reading his replies, it really put things into perspective. It made me see myself with different eyes. This man, he’s loved me unconditionally for 7 years. He’s held me as I cried, he’s calmed my fears. He was there through cardiac ablations, my passing out, losing strength to walk. He’s seen the good, the bad and the hell. He’s seen me angry, cry, and grieve over losing my healthy body. He’s talked to me as I had convulsion like episodes, he calmed me when I was upset. He reassured me when I was scared. He was my strength when I wasn’t strong.  Most of all though, he’s loved me when I couldn’t love myself.  He’s watched me as I slept to make sure I was still breathing. His never ending strength and love have really helped me grow as a person, it’s helped me grow into myself. He’s encouraged me, embraced me, challenged me, and loved me. He has pushed me to do things I love, to do things i’ve dreamt of. He’s my steadfast rock, my cheerleader and my biggest supporter.
It’s not easy being with someone that has many health issues, but as he said, nothing about that person has changed. Love is love. Love them wholeheartedly. Love them despite it all. Love them through the good and bad. When they feel like giving up, lend them your strength, cheer them on. I assure you, your love, strength and encouragement mean everything to us.
So to my amazing, loving boyfriend, from the bottom of my bionic heart. Thank you for all you’ve done for me, all you do for me, and all you will do in the future. Your encouragement and love mean the world to me.
Grá Go Deo,
A

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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My new reality…

 

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I’ve been dealing with health issues. My gastroparesis has flared to a hellish point. It’s become extremely problematic, to the point i’m hardly able to eat, and i’m living in constant severe nausea. I’ve lost weight, most haven’t noticed because i’m wearing baggy clothes to hide how much I’ve lost.

However, things have come to a head. My kidneys are struggling, my POTS is out of control, and i’m beyond exhausted. I’m malnourished and not absorbing what I need from the food I am eating. Last Monday I saw a specialist 3 hours away. My best friend Jen was with me. She held my hand, and rubbed my back as the doctor told me, I need to accept this particular procedure I need done..a feeding tube. A J-Tube to be exact. I cried, I immediately had a moment of panic.

The doctor said I’m basically starving…. Now you may ask, how did no one notice? How did no one close to me realize this?? Simple, I’ve kept just how bad things have gotten to myself. My family didn’t know, my best friends didn’t know. Only one person had an inkling, he knew something was wrong beginning of November, but I tried to seem fine, I tried to brush it off. Until I couldn’t. Now things have come to a head. Things are bad, but we can still salvage it. There’s hope, I just have to push like hell to turn it all around.

Today as I sat in my local gastro’s office, we made a plan. A new Gastric Emptying Study, another endoscopy, then we do the J-Tube. I need it done soon, before I land in the hospital. I’m scared, i’m angry, I feel so alone. My family hasn’t been very supportive the last few months. I’m basically coping with all of this and more on my own, and a few, select friends. I texted my best friend telling her this is why I walked away 5 years ago from a relationship. I didn’t want to be a burden, I didn’t want to drag him down this hell with me. 5 years ago I walked away from someone that loved me unconditionally because I didn’t feel worthy. Today, I had the momentary panic of doing it all over again. We came full circle 5 years later, and here i’m facing this hell. I’m facing my body failing me, but I can’t make that decision for him. Not this time.

Why did I panic? I felt unattractive. Realizing i’ll have this tube sticking out of my stomach, and an iv in my chest, it was too much. Why would someone want to deal with all this? Why would someone put up with all this? The answer is so simple..Love. However, I am still so scarred from  the abusive past I had, i’m still insecure in moments, I get stuck. Now though, i’m tired of it. I’m tired of letting my insecurities rule me. I’m fierce, i’m strong, i’m witty, I have amazing eyes. I’m beautiful. I’m me. No one can build me up, but me.

“You will be sexy and beautiful no matter what.”….. thats the text I got when I shared my concern with him. I’m so stuck on seeing it all as bad, he’s busy seeing me a a warrior, a fighter. He’s busy seeing PAST it all.
So, while I fear living with a feeding tube, i’m determined to own it. I’m determined to rock it like a damn pin up model. I’m determined to let go of my insecurities and live life, and love life. More importantly, to love myself and my body. I’m determined to find a photographer to work with me, and rock some pictures. Some might find it odd. Me? I find it empowering. This feeding tube is literally my lifeline right now. I need this, I need to let go of my fears, my insecurities and do what I need to feel confident. Having a feeding tube doesn’t make me unattractive. It doesn’t make me less of a person. I think as patients we can’t see the good, we can’t see our beauty. We’re too focused on the bad, too focused on what makes us feel bad, unattractive.  Let’s break the cycle. Let’s silence those thoughts. Let’s lift each other up, lets build ourselves up. We’re worthy, we’re beautiful and amazing. We’re so much more than our health. We’re warriors, we’re strong. We deserve all our hopes and dreams.

So dream, love and live!! Let’s work together to let go of the negative and embrace what we do love about ourselves… Lets create a community of being empowered.

Be+Empowered

What do I love about me??

  • Fierce
  • Strong
  • Independent
  • loyal
  • Caring
  • Supportive 
  • Witty
  • Funny
  • Inspiring 
  • Ambitious
  • Hopeful
  • I’m beautiful.
  • I’m me.

Be Fierce..Be Strong, Be YOU!!!

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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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Down the Rabbit Hole..

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This post is going to be raw, unfiltered, and real. This is me being laid bare.

Devastation, anger, betrayal, relief… those are the emotions i’ve felt in the last week and a half. Watching my future plans just fall apart. I’ve been so strong for so long.. When will someone be strong for me? When will I be held and told it’s ok? I’m angry, i’m SICK of being stronger. I’m so damn tired of it all. I’m damn tired of battling my body. I’m tired of battling doctors for help. I’m tired of not being able to eat. I’m tired of wanting another child, and seeing my hopes and dreams fade away. Most of all I’m tired of my self doubt. I’m tired of worrying i’ll be a burden to someone.  I’m just tired…

No one understands my anger, my fears, my insecurities. I don’t want to be a burden. I want to be a wife. I want to be someone that my spouse is proud of to have as a partner in life. I want to inspire others. I want that, and I deserve it. However, in my lowly depression I CAN’T see that. I can’t see I deserve it. I can’t see how others see me. I can’t see myself as inspiring, or real. I am so scared of not being enough for someone. I’m so scared that years into a marriage or relationship my partner can’t handle it anymore. Will it be when I can’t give them a child? Will it be when i’m dislocating my hip during sex? When i’m hooked to an IV multiple days a week? Will it be when i’m in a wheelchair? I am so terrified of NOT being enough. I want to be enough.

I call my depression my rabbit hole. Falling down the rabbit hole.. It’s never good. Sometimes it’s a quick visit… sometimes it’s longer: days, weeks, months. I feel it swirling around the edge of me. The darkness becomes soul crushing. The depression yearns to take over. I’m stronger than this.. but at the moment, the darkest is tempting. This rabbit hole, this spiraling blackness, we all have it, just varying degrees. Some are masters of their depression, while some succumb to it. It’s our character, our strength that decides that.

Strength…we all have it. Control…we all want it. What if we submit the control? What if we submit the control to acceptance? Acceptance that this battle will not end, but that this battle will not END us! We yearn for control of our life, our emotions, our everything. Really though, we have no control. When I feel out of control of my emotions, I get scared, I tend to “run”.. I tend to become so seized up with worry, and fear I can’t handle and process these emotions. I simply shut down..It’s a defense mechanism. I can’t help it. I try, I try not to shut down, but that swirling darkness… that old peaceful friend of mine.. yeah it’s tempting. The silence, the peace I find there by embracing it is a welcome reprieve from my overwhelming emotions.

Ahh… that swirling darkness, with the taste of yearning, longing, peace.. but it’s fake peace. I know it. You know it. Everyone with depression knows it. However we still welcome it like a comfort blanket. Why? Why do we do this??  Perhaps it’s because we feel no one actually cares how we are? No one wants to hear us yell, scream and cry our feelings out. We need to do that though. We need to purge them. We need to stop faking that we’re ok. It’s ok, to not be ok. We’re so afraid of someone seeing the crack in our armor, we hide it. We’ve become masters at hiding it. I’ve mastered that skill. I’m so tired of hiding it. I’m so tired of faking it. I’m so tired of the lonely darkness swirling around.  Our partners don’t understand, our family doesn’t understand. We do though, we as warriors understand each other’s battle.  That taste of peace we find in the darkness, it calls to us. It sings the song of a siren. It beckons us. Resisting it, it’s not always easy. It’s not always to see the light in the darkness. We can’t see the wonderland through this darkness of a rabbit hole. We, in our swirling peaceful darkness can’t see the light. We need to always remember, light will ALWAYS come. Light will always shine. The sun will always come after the storm.

We all go though ups and downs. We overcome them. We go through relationships, friendships and family issues. How we handle it is what builds our character.  We can fall apart, we can break down, but from that we need to find our strength and rise again. Stronger, and wiser. For we are The Phoenix. 

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Going Ghost..Don’t do it.

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This is going to be raw, deep, and i’ve held it in for so long, I need to tell it.

Two years ago I went “ghost” as my best friend calls it. She had just been through hell, she needed me, and I just fell of the radar. I wasn’t the friend that I should have been for her.  I was going through such a dark time emotionally and mentally. Instead of leaning on my friends, I just pushed everyone away. “Going Ghost” caused me to lose one of my closest friends, and nearly lose my best friend. It’s now 2 years later, and I’m still recovering from losing my friend, and from my friendships changing..

I had been dealt a blow with my health, told i’d be an idiot to have another child, that I need to get a hysterectomy. That i’d eventually end up in a wheelchair. That my immune system was weaker than we thought. I shut down. I became angry, bitter, depressed. It was probably one of the darkest moments in my life.  My family rallied around me, told me not to shut them out, not to shut my friends out. They all tried to get me to see the light, but I couldn’t. I was in a never ending battle with anger, grief and feelings of being a burden. The darkness was soul crushing. Constant drowning in emotions I couldn’t understand or even verbalize.

Being a burden..i’ve said that more times than I can count to my family, my friends.. I’ve thought they deserve so much more than this sick person, draining them mentally. They didn’t need a burden. We’ve all thought that in this journey. This diagnosis, whatever diagnosis you have, we’ve all felt that way at some point. We’re not a burden, never think that. My biggest piece of advice, take to your spouse, your family, your friends when you start to feel that way. Listen to them. Share your worries, fears, goals. You are NOT your illness. It doesn’t define you.

Grief… We all deal with grief differently. We all grieve different things. Those of us that can’t work, we grieve that, or not being able to walk, have children, that extreme changes in our lives. These are all life changing things, these are all things we can experience grief over. Don’t let it consume you. Please. I did, and it caused so much damage.

I put up a front, I pretended i was fine, my dad saw right through it, so did my boyfriend. Finally everything came to a head. I missed important things in my best friend’s life. I can’t ever get that back, I can’t ever get a do over. That’s something that sticks with you. I decided to seek counseling. Through my sessions with my counselor, I learned so much. I learned coping skills, I learned that leaning on your friends is an amazing thing, friends are there, they love you. I learned I can’t control everything, I can’t shut people out like I was. More importantly, I learned it’s OKAY to grieve your old life, grieve who you were, and what you could do, but that you should rise from the ashes like a Phoenix.

We always try to protect others from our moods, our bad days. That doesn’t help, that in a sense can make things worse. Shutting people out hurts not just you. I look back and realize had I let my friends in, let them know the darkness swirling, they would have cared! They would have been there. Instead I acted like I was a burden and shut them all out. I can never apologize enough to those I hurt during that time, to those I lost their friendship over it, it’ll always be something etched in my heart. All I can say is that I wish I could have done it differently, but when you’re in such a dark place, you see NO OTHER options.

Depression, anxiety, anger, grief.. We in this community experience these. We need to not shut people out. We need to not feel ashamed for feeling these emotions. Going thought the motions won’t help, it’ll drag you further down. Lean on those closest to you, reach out to me if you need to, but please don’t bottle it all up. It will eat at you, it will hurt you. It’s ok to feel broken, it’s ok to feel pain, anger, bitterness. Let it strengthen you, let it transform you from the ashes into a beautiful soaring Phoenix. You are a warrior, you are beautiful, strong, amazing. YOU are YOU!

 

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Self Esteem Struggles

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  As I scroll through the many dysautonomia groups i’m in, I notice a recurring thing.. Quotes, concerns and just venting about relationships, self esteem, sex. So many of us go though relationship break ups, marriages, fertility issues, hard decisions regarding dating, or just to have children. We all look to each other for support and guidance. However, i’m noticing a distinct lack of community for these topics, and it’s disheartening.

Lets really delve into this. Being chronically ill, we deal may deal with fatigue, wheelchair use, mobility aids, allodynia, hair loss; many others things that affect our self esteem. We may have had horrible dates, or our partners leave us. Guess what? It’s their loss! You’re a warrior, you’re stronger than you think! Most importantly, you are NOT alone. We’ve all been there.

I’ve struggled with self esteem issues for years, i’m not ashamed to admit that. I struggle to like my body, weight or smile. I’ve struggled to see what others see. In the last year, through counseling and the amazing support of my family, I’m starting to see what others do. I used to worry I wasn’t skinny enough, or pretty enough for some. I always felt I had to overcompensate for it. I hated dating, and the inevitable questions like: “Do you work out?”; “Do You work?”, or my personal favorite “So you just read all the time?Like you sleep all day? That must be nice.”   No, no it’s not nice to be so bone tired all the time! It’s not nice to take a shower and then feel like you need to nap!

Dating was anxiety ridden hell at times. You know what though? I had faith that at some point, it’d be worth it. That there is someone out there that was willing to be my cheerleader, rock and partner through all this. It didn’t happen overnight for that realization to come to me, it took a while. That shift in outlook isn’t overnight. It takes time. Time to realize that you, my darling reader ARE worth it. You  deserve all the happiness. Your health doesn’t make you worth less!

Sex… yes sex.. We can all chuckle at that for a minute! With our lack of energy, self esteem, and health greatly affects our sex life. Let’s not hide, or not discuss it. We need to discuss it. We are all adults here (at least I hope everyone is). We want to feel that intimacy with our partners, the desire. Though, I can guarantee you, that there’s times you feel it’s a chore. No! Don’t think that. This is a way to increase intimacy snd strengthen your bond with your partner. It’s important to find ways to do this. Difference positions, are important. Communication is key. Communication is vital in a relationship. We’ve all felt less desirable at some point due to our health, don’t hide it. I’m a firm believer, though I know not everyone is, that sex is important in a relationship and maintaining intimacy. Communicate this with your partner, more importantly, listen to them. Adjustments, trial and error are vital in finding what works best for you as a couple!

 

Kids.. some want them, some don’t. I have a son. I’ve always wanted one more. Learning that your illness is so debilitating, that having a child would be difficult is heartbreaking. I’ve been there. Some choose not to have a child due to their health, some choose to try for one. Some experience heartbreaking fertility issues. It’s not easy. These aren’t easy decisions to make, easy things to experience. I’ve had 6 laparoscopies for endometriosis. One oophorectomy-right side. 4 cardiac ablations,. I have mobility issues, GP, POTS, OI, endo, IST/SVT, migraines, fibromyalgia, neuropathy, EDS and Nephrotic syndrome.  I’ve spent the last year with my doctors, discussing everything about a pregnancy, the what ifs, plans, good, bad and ugly. I’ve been told brutal truth, to where i cried. I was in therapy to help in the event I made the decision not to have another child. I was in therapy to process my emotions. To process feeling like a failure as both a woman, and future wife.

I’ve wondered, and cried thinking about my son having a disabled mom. There’s times i’m upset that I’m not a soccer mom, but honestly I still feel blessed and happy to have him. I know my limitations, and I do what I can. We have a very open communication with him about my health. He loves our movie days. He actually pushes me to use my walker or wheelchair more. Though I know some wouldn’t agree, but I think my son growing up as he is, is learning to be more compassionate, caring, empathetic and understanding. He has a heart of gold, and is such a helper. As much as I struggle, I wouldn’t trade it for the world.

I know i’ve made comments about feeling fat, or ugly. My family hates when I put myself down. The self deprecating comments, we’ve all said them. We’ve all dealt with all these issues at some point in time. We feel there’s no one to talk to about all this. That no one understands,. You’re wrong. There’s so many just waiting on a community to forge this support! There’s men, and women that struggle. This isn’t just a woman problem. We’ve all struggled. Living with an illness that affects us so much, that has us disabled, or not, we all experience these issues. It’s up to us to build that comity with each other. I see on facebook, people tearing each other down. That’s unacceptable. Be the light! We, as a community should be lifting each other up, not tearing each other down.

Personally, I absolutely refuse to let dysautonomia destroy my goals, hopes and dreams. I won’t let it control me, I won’t let it rob me any more than it has.

 

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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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