We made is through 2020!! I feel like that is such an accomplishment! We’ve faced things we’ve never before experienced. We made it through. We made it to 2021.
My 2020 was riddled with appointments, treatment decisions, ensuring my nutrition was stable, and virtual school for my son. Which was an absolute disaster. So much happened, so much to work through, process and cope with. My son struggled immensely with the lockdown, he struggled with doing school virtually, his OT appointments stopped. It was hard. We always say how hard it’s been for us adults, but it’s been hard, if not harder for our kids. He’s back in school and thriving!
My 2020 rounded out with back to back procedures and prepping for a major surgery in January. Back to back port replacement surgeries.
2020 was the year that was trying to us all. Especially those in the chronic illness community. We struggled for care, we struggled with mental health. Some had procedures rescheduled, some had emergency surgery. Despite our trials, despite everything that tried to knock us down, we’re still here. We’re still standing. Recognize the accomplishment. Recognize how far you’ve come. Be proud of you, as i’m proud of you.
2020 was difficult. It tried to break us, it tried to take so much from us. Yet, we’re here. Standing. You are amazing, strong and brave.
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.
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.
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.
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.
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!
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.
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..
Insecurities are a real bitch. They suck. They suck the love, joy and happiness from you. They can destroy you, your relationship and your happiness. “Just be confident”.. People say.. Don’t you think i’ve tried that?? Do you think I like being this insecure, scared person?? 5 years ago I was so confident. I knew who I was, what I wanted, and I wasn’t holding back. Now, I’m terrified, scared and emotionally fragile.. What happened you ask… well i’ll break it down.
I left someone I loved and whom loved me unconditionally, and wholeheartedly. Simply because I felt I wasn’t worthy. I felt I didn’t deserve this amazing person that loved me so fiercely. I was told i’d be wheelchair bound, I ignored the doctors, I was determined to walk down the aisle to him, come hell or high water. In the end, I left. The fear, the uncertainty, the unworthiness I felt, overpowered his love. At what point would he grow tired and leave? At what point would he finally realize I dragged him down, that I embarrassed him?? So, I left first. Defense Mechanism. I didn’t stop to think what this would do to him, or me in the long run. I didn’t think how this would affect him emotionally. I buried myself. Locked who I am deep inside. I was this vibrant, confident, headstrong, sexual person. I locked her away… I became unsure, quiet, reserved… Why?? Because That me, wasn’t his me… That me, wasn’t the me he brought out and encouraged. If I lost sight of the other me, the real me, it wouldn’t hurt so bad, not being his. This new, reserved me… the repercussions are immense. I lost me. I lost my confidence, my strength, my vibrant self. For what? I lost love, for what? Fear?? It’s bullshit in all honesty.
One of my good friends tried to tell me, she tried to warn me. I shut her out…. Years later she and I have reconnected, just as He and I have… This fear… I wanted to shed it. I was slowly embracing the real me again. The me I used to be. Loud, vibrant, confident, secure in who she was and in her relationship…… Then it all came crashing down.. So so hard. In March, I had my life rocked. Words spoken by people I trusted, people I leaned on. This had a rippling affect… So many ripples.
This feeding tube.. .this device that is essentially keeping me alive is destroying my confidence. Why?? Why am I letting it?? Why am I losing sight of everything again? Why is the fear so prominent?? Today, today I nearly lost him. Today he told me to have a good life, because he’s obviously not what I want… I screamed, I yelled, I cried. Because for 7 damn years he’s who i’ve loved. He’s who I imagined walking down the aisle to. He has been my cheerleader for years. He has been there for every step along the way, even when we were apart. Just him. He and I are like Yin and Yang… Peanut butter and jelly… We’re Us… We always have been. We’re like Noah and Allie finding our way back to each other…. Today…today was almost the end. Today my best friend Aly tried to soothe me, calm me and reassure me. I couldn’t be soothed. I couldn’t be calmed. I was heartbroken. I think everyone saw the cracks forming. Everyone warned me of what my insecurities would do… That was the one thing he said he couldn’t handle, the constant negative talk about myself… the constant putting myself down… comparing myself to other women… women without tubes, ports, limps… healthy women, pretty women, skinny women… All that I’m not… Would he get tired and want that?? Would he see me and just not want me anymore?? Would he rather one of the “barbies” from before me?
What triggered this spiral… a simple request from him…. Complete and utter trust… Trust with my heart. I trust him with my life.. trusting him with my Heart… Knowing he is the one person that would have all of me, mind, body, heart and soul…The ultimate power to emotionally hurt me..Holding it back, not giving all of it, it protects me. It gives me “control”…Trusting him so completely, trusting him so fully, and immensely with the one treasured thing, my heart. How do I do that? How do I open that up to him? How do I let go of the fear, of the absolute terror? Do I think he’d hurt me? Never, not intentionally. The thought of opening up, of letting him in completely, what if he proves me wrong? That I AM worthy? That I AM deserving?? That I AM this amazingly beautiful and so full of life person?? What if all these things i’ve thought of myself for years are proven wrong?? I’ve spent so much building up and saying what i’m not, that what if I am these things? What if I am this beautiful, and loving person? What if I am this sexy, confident person?? Can I still be that, with my feeding tubes, with my port, with my cane?? The only person saying I can’t, is me… My insecurities.
That’s my life.. For three days a week, I run IV Fluids for 4 hours, and Every day I run feeds for 16-18 hours… This is Me….This is what I see. This is what he should see, but doesn’t. How can he see all this, and still love me? How can he see it and still think i’m beautiful and sexy? I want to see what he sees. I want to see what everyone else sees.
On the other hand, what if it doesn’t work? The fear, the absolute heartbreak is crushing. Am I so afraid that I can’t trust completely? Am I so scared that i’m willing to lose love? I have a chance at love, a second chance at a really great love. Not everyone gets a chance at love like this, and here I have a second chance… And what am I doing? I’m letting it slip away. I’m slowly losing myself, I’m losing everything. I’m working so hard to stop, i’m trying to rebuild myself. The fear, it’s so there. How can I let it go? How can I love me again. How can I do this??? One day at a time… That’s how. Through the love, support and encouragement of friends, that’s how. I need to see myself as everyone else does. I need to realize my worth, realize how worthy I am of this love. Of all the good in my life.
Insecurities are a bitch. We all have them. We all struggle, just varying degrees of it. Some of us let it control us, let is shape us, affect our relationships. It’s so hard to be strong enough to resist, strong enough to overcome it. Trust.. It’s such a word we toss around, but when it comes down to it, do we have that in our lives? Do we fully trust people? Trust them with all of us?? Do we take that leap? The leap of faith and trust. The trust isn’t given freely, the ultimate trust is treasured. We hold back because we want to protect ourselves. Protect ourselves from potential heartbreak. But what if we didn’t? What if we put our trust in them? What if we took that leap? It could be epic, phenomenal.. Amazing. I know it’s not easy, I know we’re scared, but maybe, just maybe it’ll be worth it. I sit here, tears in my eyes, pouring my heart out. Please, don’t let your insecurities win, please face the fear, please find love and hold on to it. It’s ok to be afraid, it’s ok to be scared, but don’t let it ruin your relationship. I’m trying not to, i’m trying to overcome them.
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.
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.
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. 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!!!!
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.
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?
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.
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!!!
Hello my beautiful and amazing lovelies!!! I know i’ve been missing in action, but now i’m focusing more on writing, with the support of my family and friends!!!
OK!! Lets get down to it! So, i’m not sure any of you know, last year I signed on to be a Community Leader with Dysautonomia Support Network . This was so important to me. I want to connect other patients, other caregivers, I want to work together and get doctors involved in learning more about dysautonomia. This is a passion of mine. This I do, for all of us, for you, your wife, sister, mother, friend.. Anyone that suffers any chronic illness, we need to build that support system together! I’m working on projects, still learning the ins and outs of things. It’s been an amazing time learning and volunteering with so many amazing people. 🙂
Now I know i’ve touched on it in a few older posts. I walk with a limp, with an unsteady gait. I usually use a walker. Well, my rheumatologist is sending me for Aquatic Physical Therapy. I had my first consultation this past Tuesday. It was interesting, long and tiring. I have motor control and planning issues. My joint instability also lends to issues. I have major balance issues. My goal is to walk down the aisle at some point, and dance my first dance and dance with my Dad! She recommended a wheelchair for distances and anything that involves a lot of walking. This, unfortunately I know was coming. We’re now at a safety thing, a wheelchair will give me a bit more freedom, and allow me to do things with my son/family. When I got home, I was upset, I cried, and just didn’t want to acknowledge she was right about the wheelchair.Two amazing friends, whom I met through DSN, also were amazing at reassuring me of things, and how it does’t have to affect my life as a mom or wife negatively unless I let it. Between them, and my family, they really eased my mind. I know it’s not an easy thing to accept, but we need to acknowledge our body’s limitations, we need to listen to our body, not push it till we fall, or are utterly exhausted. We need to take care of ourselves too!
This brings me to my next topic.. Self Care! What do we do for ourselves? To relax, refresh our mind, and body? Self care is so so important. The below quote is all too true. We must take care of ourselves! 🙂 What’s your favorite thing to do?? Leave a comment, lets start a discussion (I may create a facebook page for my blog), and maybe give each other ideas!
Alrighty, someone asked me how can I be disabled, sick, and date. I talked to my counselor, and she helped me to see myself for who I am. I’m strong, i’m independent, i’m compassionate, passionate, loving and caring. I’m a silly in the car singer, dancer, and goofy person, I love meme, and jokes. Why WOULDN’T anyone want me?? My physical limitations don’t have an impact on WHO I am. They DON’T define me. I think that’s what we in the chronically illness community deal with. It’s become a part of us, our life, and we’re so quick to just dismiss the chances of life, or really living life. I think we need to always remember, we’re people. We’re not our illness. We’re not our dysautonomia. We’re not our Ehlers Danlos, Our Lyme, or anything else. We’re ourselves. We are who we are. We’re people with dreams and goals. You deserve all the love and happiness. Don’t let your illness define you.
I can’t stress this enough, always be true to you. Always be a voice, always know you’re beautiful. you’re strong, you’re a warrior. Most importantly You’re not alone, there’s a community standing behind you. There’s always someone there to listen, just reach out. If you’re new to a diagnosis, reach out to a group. If you’re new to being a caregiver, reach out. I will be here to listen. For now my beauties, stay who you are. Continue being the warriors you are, be proud of who you are.
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.
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!!!
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!
Hello all!!! So I had a few days of feeling great..Then BAM relapsed!! I feel so weak, nauseous and just in so much pain. My friends are so understanding and I truly am blessed to have them in my life!
I’ve been on my antibiotics for the H. Pylori for about a week or more. I unfortunately had to stop them. I getting so sick from them, and It was too much. I’m calling my gastro to find out what to do in the mean time. I’m starting to wonder if I’m allergic to them, or just too sensitive for them!!
I’m spending the summer in Tennessee with my mom and step dad. In the country, with so much less stress!! Mathew is so excited. I’m looking forward to it as well!
I’m also so tired of using hypoallergenic laundry detergent!! I miss the wonderful smell of freshly cleaned sheets!!! It’s silly, but its at times like that when I feel angry over my illness changing so much of my life. I’ve also had to decide to go back to my neurologist at Cleveland Clinic. It took serious discussions with my family, but we feel that maybe she’s the best to help with my migraine treatment. My internist is also concerned about my constant bronchitis. So I’m now on allergy medication, and flonase! Let’s hope I don’t have to go onto an inhaler, but he’s pretty sure i’ll end up on that too!! I have such a crap immune system!! The new neuro I saw also wants to do Mitochondrial Testing, but I’m going to see if I can get my neuro at Cleveland Clinic to do it. My internist says it would explain a lot if I do have Mito. So we’ll see!!!
Things have been good and bad, but through this journey i’ve learned who my true friends are, and made even more life long friends. I’m truly blessed to have the support system I have. We coul be negative about being disabled, sick, and in hellish pain, but what does it solve??? Nothing!!! I chose to live the best I can, to be happy despite my illness. I choose LIFE!! Yes I’m disabled, chronically ill, walk funny, will end up in a wheelchair, but you know what?? It’s alright! I’ll still continue to fight to live. To be a mom to my amazing son. We should focus more on the positives than the negatives. When I start to worsen, I’ll know that no matter what, my family will be there to help me. I know now, that things are worsening, and not many people know. I put on a show, but now I no longer have the energy. I’m tired of hiding the true me. The pain, and the way I am.
Be proud of who you are, no matter what!! I am who I am, and I’m proud to be me!! Never let anyone take that from you!