Hearing Loss, Masks & Ableism

Thursday I was craving some fries from McDonalds, which is one of my safe foods due to my gastroparesis. So I placed a mobile order, I did curbside pick up, but it wasn’t letting me check in for pickup. So I went inside. The cashier was talking to me and I couldn’t understand/hear her. So I told her. Then the manager started talking to me. I repeated I can’t hear them. She started again. I yelled “I’m partially deaf, I can’t understand you.” Then she laughs! The manager laughed! There were several guys in the waiting for their food, one stepped up to help me. When I walked away, she laughed again! I was so angry and embarrassed, I was almost crying. 

Masks have long been a challenge for those that are hearing impaired. Many have experienced horrible situations in being unable to communicate. This is NOT ok. This is stressful and honestly traumatizing. I have 30% hearing loss in my left ear and 40% in my right. I’m exhausted sometimes from straining to hear what’s being said to me by others.

Now you may think, what’s the big deal. Well the big deal is, for those in the hearing impaired community, reading lips is imperative to communicate. With lips covered, they can’t effectively communicate. Many won’t move their masks down, so their lips could be read. Many won’t write down on a pad of paper for the HI person, many make no effort to accommodate to provide effective communication. What is even more mind blowing is how often this is happening at doctors offices and hospitals. This happens way too often at doctors offices. I have told them, upon checking in for an appointment, that I am hard of hearing. I will not hear my name if called softly, or on the other side of the waiting room. Frustratingly it STILL happens! I had one appointment last year with an Ortho, I couldn’t tell you what was said. He wore two masks, and didn’t speak clearly. Again, this was AFTER telling him I’m hearing impaired.

 The sad reality is, this is happening at an alarming frequency. We, in the hearing impaired community have lost valuable, necessary ways to communicate. This has left us reeling. This has left us experiencing frustrating, even embarrassing situations. The amount of times we’re ridiculed, ignored or absolutely no effort is put forth to communicate in a way in which we need is astounding. There’s countless videos on Tiktok of this happening, countless posts on Facebook detailing the same thing. 

“The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller

In all honesty, it’s disheartening.This is honestly ableist. Having experienced this over and over is emotionally draining. Today’s experience was completely unacceptable. It should NEVER have happened. It SHOULDN’T be happening to anyone! Struggling to hear so I can communicate, is that really acceptable? Is that really where we are? This is NOT about politics. This is about a community being left in the lurch with struggling to communicate due to masks. We need to find a way that doesn’t leave an entire community struggling to communicate. If you see someone struggling, please help them. Offer assistance. Work to find a way to communicate with them. Whether it’s typing on your phone, or writing it down. Be kind. Choose kindness and compassion.

Body Positivity.. I’m a work in progress

Two years ago I hated my body. A year ago, I still struggled. I almost lost an amazing partner because of my insecurities. I struggled with my self esteem, my self worth. I worked so hard to find what I love about myself, to find me. To love me. It didn’t matter if he told me 1000x how beautiful I was, I had to see it. I had to believe it.

I struggled immensely after two urgent surgeries in 2019 that left me with feeding tubes and a 4” scar down my abdomen. I struggled so much with self esteem, confidence and loving my body. I couldn’t see past them.  Working with Emma and Lindsey from LuLi&Co, helped me to regain that confidence back. Thank you both for helping me to find myself, and to love myself again..

In January 2021, I had an urgent surgery to place a colostomy. I knew it was an eventuality, but it became a reality far sooner than I’d thought. After surgery I posted a photo of myself wearing a bikini (photo below) in an Ostomy Group. While most comments were supportive, quite a few were not. I was told I should be ashamed of myself for wearing a bikini. Ashamed for even considering wearing a crop top. That it was disgusting to wear such things and have my ostomy, or tubes on display like I was proud of them. In what should have been a supportive group, I was torn down. I was told I was disgusting, shameful. That it was the equivalent to having my butthole showing. Vulgar I know, but that’s what I was told. I was embarrassed for sharing a moment I was so proud of after spending years building the confidence to even wear a bikini. I cried. I let their words affect me. Being told by others in a group that was supposed to be supportive that it was disgusting, or something I should be ashamed of, is disheartening.

What bothers and hurts me the most, is how women are tearing each other down. There is so much negativity, judgmental and just harsh comments. Why tear someone else down? Why? If you don’t want to wear a bikini, don’t. however why tear down someone that is?? I am so immensely passionate about body positivity. Our young women see these comments. They see the judgment.. We’re letting them down, but shaming those that are confident, comfortable and accepting of their body. I want a young women with a feeding tube to feel confident in herself. to NOT fear what others will think, or say.

Emma posted about a project she was working on about body positivity. I jumped at the opportunity to be part of it. To show my vulnerability, share my story.. These photos below are a product of the project. The message is clear…

I have never hidden my struggles with my insecurities, I have been open and vocal about my journey to regain my confidence, to accept and love my body as it is. While wearing a bikini, or crop top to some might be weird or uncomfortable due to having a tube, or ostomy, I’m going to live my life for me. I will never hide who I am. I have fully embraced myself, and my body. I’ve become a fierce advocate for body positivity. I have worked to accept my body as it is. To accept me as I am. My tubes, scars and ostomy do not take away my worth, nor do they define my beauty. They are part of me, and yes I’m proud of them. Simply because with them, it means I’m alive. Words have power, but ultimately we are the ones that decide their power. I refuse to let the words of others impact or tear me down any longer. I may still have my moments, but I am not letting anyone dictate my beauty, or my worth. Neither should you.

To LuLi&Co, and Andrea Shea Photography, you have helped me to accept myself as I am. To see myself as beautiful. As strong, as amazing. Thank you so much. You have no idea what’s meant to me.

Freedom in Body Acceptance

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Body Positivity, Self Worth, Depression, Insecurities, Counseling.. Why are these words, these phrases so taboo in the chronic illness community. Why are these barely talked about? Is it supposed to help us by not acknowledging these happen? That these can affect us? It doesn’t. It actually hurts us. Positivity in general seems to be ridiculed in our community. Why? 

I’m in my 30s, I struggle with insecurities and body image issues. I’ve been very vocal about my struggle. Yet so many still hide theirs. So many still don’t acknowledge it. Some ignore it or think they’re taboo to talk about. I have struggled tremendously for the last year. Since getting my feeding tube, i’ve struggled to accept my body as it is. Scars, tubes and all. So many others have tubes, central lines, ostomies, scars, medical devices. So many others struggle with insecurities, yet it’s rarely ever discussed? Why? Why is this so taboo? Why is there not more of a network, more of a community lifting each other up? 

If we as grown women struggle, what is this doing to our young women in these communities? What is it doing to them to see absolutely no one speaking about these struggles? Seeing no one like them out there blasting beauty standards to raise awareness and empower others? Why is there really NO ONE out there doing these things? Showing their body acceptance, showing their vulnerability? I’m not sure why, but it’s motivated me and empowered me to be that someone. Someone has to speak out. Someone has to start something to show body acceptance and positivity. Someone has to show body positivity to these young women, young men, anyone struggling that feels alone in their fight. 

 

There seems to be a struggle with body positivity. We are letting others define us, define beauty, define our worth. We are letting our diagnoses, tubes, ostomies define us. Letting them define us as unworthy, unattractive. Body positivity is so important. It’s so important to lift each other up. It’s so important to acknowledge these topics, these struggles and discuss them. We have let what society has deemed “beautiful” affect us in such a negative way. We have let others decide whether we fit into a mold or not. Guess what, we don’t. That’s ok! We don’t have to. We’re not made to. Our beauty and worth shouldn’t be based on what fits a mold. Let’s break that mold. 

I’ve struggled with this so much. It affected me deeply, it affected my relationship immensely. Counseling helped, friends helped. What really helped was someone told me: “Who cares what others say is attractive? Who CARES?! If you feel it, then you feel it! Stop trying to fit into society. Stand out. Stand up for yourself.” I remember sitting there, taken aback. Then i thought about it. They were right. I had let others’ words, others’ views affect me so much, I couldn’t see my own beauty, my own worth. My self esteem didn’t improve overnight. Goodness no. It took months of work. Months of positive self affirmations. Months of talking about my insecurities to really start to shed them. Start to being the key word. It’s a process, and ongoing process. Every day is a small step forward. 

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Depression is also another struggle. I have struggled with depression for a while. Sometimes it goes hand in hand with my insecurities. However, this isn’t discussed much in support groups. It’s almost like we should be ashamed of it. Absolutely NOT! Never be ashamed of your story. Never be ashamed of your struggle. I refuse to be ashamed of it. I refuse to hide it, ignore it, or pretend it doesn’t exist. I can’t. Why lie? Why is this such an issue to discuss? I don’t understand it. Depression happens, it happens when dealing with chronic illness. How could it not? It’s hard to adjust from one life, to this “new” life. It’s like grieving. You’ve lost who you were, now you’re struggling to find who you are, and who you’ll become. It’s ok to be angry, hurt, upset, depressed. It’s ok to feel emotions. My only advice, don’t let them control you. Don’t get so lost in them you give up living. Please, if you feel that anger, that hurt, that overwhelming sadness, reach out to someone. Reach out to me. I’ll listen as you vent.  Reach out to others, reach out. Just know there’s someone struggling similarly. 

 

It’s become my mission, my motivation to help others. To empower others to see their beauty, their worth. I’ve posted several blogs on this. I took it a step further and have participated in photoshoots. Creating powerful images that show my strength, my motivation, my beauty. These photos weren’t easy to do, it was scary and nerve wracking. What kept me going and motivated was that I was determined to LOVE MYSELF. I was determined to see MY worth, my beauty. My tubes don’t take away from it, they don’t take away from my strength, from my worth or my beauty. They do not change who I am at a fundamental level. What they’ve done is give me strength I didn’t know I had. They gave me courage. They gave me passion, and desire to help others. They gave me purpose. They have motivated and empowered me to do that for others. To show others their beauty, their worth. My tubes in a way gave me freedom. Freedom to knock down beauty standards and create my own. Freedom to strive for goals, freedom to find my passion and help make changes. Freedom to love me.

These “taboo” topics need to not be so taboo. These topics need to be discussed, need to be acknowledged. We as a community deserve more. We deserve love, happiness, goals, hopes and dreams. We are worthy. We are absolutely beautiful. You are warriors, you are fighters. Never give up. If you feel like giving up, know you have a community of warriors behind you to lift you up, to lend you strength. We won’t let you feel alone in this battle.

This post was also published on The Mighty: What Helps Me Overcome My Insecurities as Someone With Chronic Illness

 

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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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!!!!

You are not a burden…

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I’m sorry I’ve been absent for the last few months. A lot happened and I’ve been trying to process and deal. My gastroparesis has become a complete nightmare. On top of that I had to move unexpectedly. All this caused some major emotional distress and resulted in a depression/anxiety flare from hell. Lots of therapy sessions, crying and talking it out has gotten me back to a good place.

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In March my gastro team decided a feeding tube was necessary. I wasn’t getting the nutrients i needed, and was becoming malnourished. I was barely eating anything. I couldn’t tolerate solid foods, nor liquids. I was averaging maybe 1000 calories a WEEK!!! This wasn’t good, not at all. My gastro team had suggested a J-Tube in November 2018, if things worsened. I wasn’t ready for that. I was scared. However, I knew I needed help, I needed something to help me get the nutrients my body so desperately needed. So, it was decided March 11th, I’d get my J-Tube. I was going to travel to my gastro team in Tampa. I discussed it with my dad, and made the plans. We talked Thursday, I explained to my dad how my levels were dropping, and I was becoming malnourished. He said he didn’t like the idea of a feeding tube and it wasn’t able to him until I was 105lbs. What, 105lbs, i’d be dead or nearly dead at that weight. However, he said he’d help and watch my son for the two days for me…

Unfortunately things changed drastically that weekend. Things changes as such that I had to move unexpectedly and within that week. I  called my best friend Emily on the way home. She came and talked to me, leant me her shoulder. I had days to move. I needed to coordinate packing and moving in just a few days. I can’t lift furniture, I can’t over do it.. Yet I had no choice. My friends Chelsea, Emily and Aly rallied around me that weekend. Chelsea spent two days with me, just days after she had surgery. She was there, helping me pack. Sorting through everything. By Sunday, I had a lot done. We had help to move my furniture into storage. I moved as much as I possibly could into storage. I called my mom, we coordinated my move there.

Through all this I had to cancel my surgery, no J-tube for me. I had no time, I needed to move and get things settled here at my Mom’s.  The emotional toll was heavy. This sent me into a flare, this made me feel unworthy, a burden. This made me feel so low and unloved. This affected my relationship with many people. If my dad could turn his back on me, who else could??? Sadly this affected my relationship, and still is to this day. I’ve been doing therapy weekly, working through my emotions, feelings and everything.

While settling at my mom’s my gastroparesis just wasn’t cooperating. I couldn’t tolerate much of anything. It was bad. My mom saw first hand how I was suffering. I was scared, I was so so so hungry but eating caused such horrible pain, bloating and nausea. I couldn’t handle it every time I ate. I was so tired of feeling sick. Finally I caved. I called my gastro, I explained how things were. Bloodwork showed I was deficient in a lot, I was becoming malnourished. My weight started dropping. I was so weak and tired. My mom’s support meant the world to me. We finally rescheduled my J-tube placement for April 11th. We showed up that day, prepared for surgery. Finally i’d be getting the nutrition I needed. Oh how wrong we were. Sadly my surgery failed. They couldn’t place my tube. My doctor said it was like someone glued my intestines together. What he didn’t know was that I had stage 4 endometriosis years ago. I had it on my bowels. I had so many surgeries to deal with my endo. I cried, I was so confused. I felt so defeated. This failure led to my needing a surgical team to place it. My gastro was able to get me into the surgeon within days.

I met with the surgeon. I wasn’t prepared for that appt. He feels my entire GI system is failing. I’m having swallowing issues, and issues with my bowels. He’s concerned if my system is failing, what do we do?? He said my nerve damage/EDS/Dysautonomia has caused this massive storm within my GI system. I couldn’t even process it. We discussed feeding tubes, possible colostomy.. How, how could this be my life now?? It’s not fair. From that appointment, within one week we had rescheduled my GJ placement. April 25th… what a lot to process from that appointment. Feelings of being a burden popped back up, feeling abandoned. Just so many emotions to process. When we arrived to the hospital, i started getting nervous. Was I making the right decision? Do I really need this? I cried, my mom reassured me I was doing the right thing..We finally got my GJ placed, and sadly within a week, the ER broke it. This resulted in a 4.5 day admission to the hospital. It was ridiculous. The good though, getting the nutrients I need, finally was an amazing feeling. To use my tube, to realize this tube literally saved my life. It’s eye opening just how bad things were. Another few weeks and where would I have been?

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Through all this, I missed the comfort and support of my dad. He had no idea I was going through all this. I felt like a burden. All this, the lack of support, it takes a toll on you, both emotionally and physically. Not having the support you once had, it’s heartbreaking. It leaves you reeling, trying to figure out what YOU did wrong. I realized, this wasn’t on me. I did nothing wrong except try to let my parents know what was going on. I just wanted their support, compassion and understanding.

 

One thing that remained constant, my mom’s unending support and love. She rallied behind me, went to my appointments with me, we asked my team questions and made the best decisions for me. She’s been with me for every surgery, major diagnosis and through this entire journey. Her being a nurse has helped immensely. She’s helped me navigate this crazy stressful world of healthcare. She’s held me as I cried. Reassured me i’m still me, still loved and still beautiful. Each time I cried after surgery, she was there holding me, hugging me, lending me her strength and love. Having her in my corner has really helped me through this. She’s always been unwavering in her support of me when it comes to my medical care. Her here, holding my hand as I was prepped for surgery, then told it failed, was a godsend. Really, there’s nothing like the unconditional love of Mom. I’m thankful everyday she opened her home up to us, and has rallied around my son and I through this. I know with her, and my close friends in my corner, I can get through this. Je T’aime Maman.

 

I cried for days after my tube was placed. Every time I saw it I cried. Would I still be attractive? Am I still loved? Why? Why is this my life. I cried so much, I got so depressed. I decided to order a new bathing suit. Looking at myself, my body with this tube. Realizing this is my life. This is what is essentially helping keeping me alive. I’ve been through hell with my body. I’ve been through countless surgeries. Countless scars, 2 medical devices in my chest. Now I have one in my stomach.. This, this is alot to process. But you know what?? I’ve learned just how strong I am. I’ve learned i’m still me, I’m still a fighter. My scars tell a story, my body shows my journey. My fight for life. My fight and will to not let this illness destroy who I am. I’ve decided to embrace my tube, to live, to truly live.

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Me, with my GJ Tube.

 

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Rocking my new Tankini

 

This is the new me. The me that has to be tube fed due to gastroparesis, and intestinal dysmotility. It seems my entire GI system is malfunctioning. My Ehlers Danlos and Dysautonomia are wreaking havoc on my body. My levels were dangerously low, and I was malnourished. my weight was dropping rapidly. I fought hard to not get the GJ tube, unfortunately I had to make the best decision for myself and my health. I’ve struggled emotionally with this. I cried for two days every time I looked in the mirror. I struggled with the insecurities of this. This hasn’t been easy for me. I’ve lost friends, I’ve had family turn their back on me. I fight, I stand tall. The new me will rock this, I won’t be ashamed of it, for it doesn’t change me. It allows me to live. To get the nutrients my body so desperately needs. Without this, I’d be starving to death. And that isn’t an option. I look at myself and realize how strong I am. How hard I fight to never give up. This is Ehlers Danlos, this is Gastroparesis. Gastroparesis is a horrible disease, but i refuse to give up. My feeding tube saved my life. I’m going to embrace it.

I’m unstoppable. Most importantly, i’m NOT a burden. I’m not an inconvenience. I’m hoping to go back to school. Get my degree in Interior Design. I want to specialize in Handicap Accessible homes/businesses. All inclusive. I dream of having my own firm. I’ll get there. Some day. I’l do it, for i’m not giving up. I’m just getting started.. This phoenix will continue to rise from the ashes. My darlings, I want you to rise too. I want you to believe in yourself. Go after your dreams.  Don’t give those up!!!

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End of the Year Review..

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Hello my dear readers!! Tonight is New Years Eve. I’m home, ready for bed. LOL. It’s been a rough few days, this is not how I wanted to end the year. All I can say is, at least I haven’t landed in the hospital!

My goal for the upcoming year is to work on getting answers for my health, or as many answers as I can. I see my new neurologist next week, and I’m excited, yet nervous! I’m hoping things go well with him. I’m also working with University of Miami Neurosurgery Department to get an appointment with Dr. Green. They’ve been so helpful.  I also hope to get a wheelchair. 🙂 And make it special, and just for me. I’m nearly completely unable to bear weight on my left leg due to the pain in my hip. I also have some silly goals I’ve set aside for myself:

 1) Get the cooling bed so I can sleep!

2) Start crossing things off my bucket list, first is to experience the Northern Lights up close and personal.

3) Get special contact lens for my photophobia.

4) See my son graduate VPK (in May)

5) Write a book.

6) Make new and long lasting friendships.

These are just a few of mine! What about you?? Have you decided any resolutions for yourself??? This year has been very difficult, and at times i’ve wanted to give up, but I kept on fighting. Just as I will next year! Sometimes our trials seem so much, too much at times to handle, but we must remember, that we can overcome so much with our family and friends at our side.  I want to help others as much as I can. To help others see that even though we battle this hell, we don’t have to let it consume us, we don’t have to let the darkness win. Let’s start this new year off right. With positive thoughts, and hope in our hearts! Hope for so many things, and people. Remember we are all battling something, who are we to judge others?? All we can do is be kind to one another, show compassion, and hope that our kindness helps someone else.

So my dear readers, as I mentioned in the last post, I’d truly like to make this more interactive. I’m working on making this an active site, and hopefully I can have that done!

Stay safe my dear readers, and Happy NEW Year!!!!!!!!

Day After—We Survived!

 

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So, it’s the day after Christmas for those of us in the US..and guess what?? We made it, we survived the stress of the holidays! Maybe not by much, there may have been some falls, some passing out, some anxiety attacks, some arguments, but we made it! Lets all take a bow, or clap for ourselves! You know why? Cause dammit we deserve it! 🙂  This holiday was definitely hard on me, I was definitely a lot worse health wise this year than I was last year. I woke up Christmas morning, knowing it’d be a rough day, I was already exhausted from not sleeping well, and in a lot of pain. My son was already up and ready for presents, but first we had to have breakfast, and open our stockings from Santa, (he’s only 4). My dad made breakfast, our traditional Jiffy Blueberry Muffins, while my son and I opened our stockings. I got my cool gear cup, I’ve been looking for, in green! It seemed Santa didn’t want me to get sick since I got a lot of antibacterial wipes and hand sanitizer, he also got my favorite lotion, which is the only one I can use now, Cocoa Butter! Also Got some Hello Kitty Lip gloss, Yes Hello Kitty! LOL. Some other stuff as well. My son of course got all boy stuff, matchbox cars, batman figurines, tattoos, minions toys, finger skateboards, and candy..sigh.. candy and my son do not get along well, we limit his candy intake to the extreme. LOL. It hypes him up so much. So we finish our breakfast, while Pop (my dad) goes through his stocking, my son is literally jumping in his seat for presents. Telling us to hurry. And yes Santa did come and he had already gone through those presents. He got a remote control truck, an Iron Man toothbrush holder thing (haha like my description?), and an outfit for school.

Soo….finally Pop finished his breakfast, and it was present time, so we all head to the tree. My dad gets me a blanket in case I get cold and a pillow for my back. And we start handing out presents for my son..This kid made out like a bandit!! LOL he’s loved. He got clothes, Duck Commander PJ’s, TMNT PJ’s, another shirt for school, Skylanders game, Angry Birds Light up shoes, and Perry the Platypus shoe, a special book I made him of his Bible verses they memorize in school, a build your own bottle rocket, solar system model to build, a rocket ship clock that lights up the room and shows pictures of the moon or galaxy on the ceiling. So much science stuff for him. He loves science so much!!!! He was so excited!  I got some sheep pajama pants, a Kinect for xbox, and a game for the kinect. My dad got some pictures for his picture frames, a journal for himself from me, and a very special gift from my son: a poem “Walking with Grandpa” we also included pictures of them together, and my son signed it. I converted it to a picture file, printed and framed it. He choked up with emotion. And hugged my son so tight. 🙂 It was all worth it.

After presents, I rested a little bit, then started an apple pie.. Yes ladies and gents, an apple pie..home made! It turned out so so delicious! My dad made a standing rib roast, rubbed with steak seasoning and horseradish sauce, it was so delicious. I also made mashed potatoes and green beans.  My uncle and his girlfriend came for dinner. It was a wonderful day with family. 

As I was preparing for their arrival I decided to shower..of course I fell in the shower and seemed to have hurt myself pretty badly. I have a stiff neck, and weird numbness/pressure along my spine, along with tremendous pain in my neck, spine and hips. Of course unbeknownst to me, my uncle and his girlfriend arrived just in time to hear me scream and fall. Oh joy. But I brushed it off and made the best of the evening! I was determined not to let it ruin the day. I found a new friend in my uncle’s girlfriend. I’m glad to have met her. We ended up talking and sharing stories of our horrible experiences with doctors. She loves my uncle very much and I’m so happy to see him so happy! We exchanged numbers and hope to stay in contact with each other! 🙂

So my dear readers, while some of us are suffering through the pain, remember there is always someone there to help you, to love you. It may be someone you least expected. Instead of focusing on the bad, let’s start looking at the good. We’re alive, we’re loved, we’re supported. In many ways we’re blessed. We may not have good health, or be rich, but we’re rich in love, and support. To me, those things are worth more than money!

Let’s start thinking about our New Year’s resolutions! I want to start making this site more interactive! I want to interact with my readers!  Let’s start working together and reaching out to each other and focusing on good, not all the bad!

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