Be Empowered – Page 3

From a child’s eyes…

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Hope you all are well!! I’ve been busy with summer break and had a few health issues. Hopefully we’re heading into right direction now!

This post I wanted to do something different. My son is super excited to be a part of this! He has such a heart of gold. He’s so compassionate, understanding and just amazing. He is a big help. When we go out to eat, he asks the waiter about peanut oil, and such due to my severe peanut allergy. He makes sure it’s safe. He’s my little big helper. I see he gets upset sometimes when I can’t do things other moms can. I can’t walk through Disney, or go play soccer with him. I can’t go sit at the beach all day due to my heat intolerance.

As much as I know he’s a happy child, I really wanted to know his view on all this. How he sees it. So I sat him down and did an interview with him. He’s super excited to be apart of this. He’s also wanting to record a video, which we will be doing today or tomorrow and uploading. Without further ado, here’s his answers.. Here’s what it’s like from a child’s eyes..

From a child’s view..

1) When I first got sick, and had to adjust to doing things, how did you feel about that?

Mathew: I got sad, because you couldn’t do fun stuff with me anymore.

2) Have you often felt overwhelmed? If so, how do you deal with it?

Mathew: Sometimes.

3) Do you ever feel angry? If so, why?

Mathew: Yes, Because you’re always tired, we can’t ride bikes or play soccer.

4) What is the hardest thing you’ve had to face in having a mom that is chronically ill?

Mathew: That you’re always tired. That we can’t go to Disney or the beach. That you can’t walk around fun places. Even if you use a wheelchair, I don’t care, I just want to go to fun places with you.

5) Do you prefer when I shield you from the bad days? Or do you want the truth of how things are?

Mathew: Sometimes I would prefer you to lie about the bad days, sometimes be honest.

Me: If you could give parents and kids new to this any advice, what would it be?

Mathew: For kids: Journal your feelings. Be honest about how you feel. Adjust to doing things at home. We play board games on bad days, we read together, watch. movies. We do what we can together.

For Parents: Your child will get angry, but understand their feelings, and talk them through it. Find things to do at home together that’s low energy. Make memories together. You don’t have to go somewhere to make good memeories.

6) If you could tell me anything about how you’ve seen me struggle with my body, what would it be??

Mathew: You’re a good mom, you do everything you can for me. You make sure i’m happy. And You need to use your walker more, dad says so too.

7) Do you know how much I love you?

Mathew: Yes, I do.

Well, that was enlightening. He’s wise beyond his years. He’s honest, and understanding. We trying to hide things from our kids, to protect them, but maybe that’s leading to more anger, more resentment. We should open a dialogue with them about it. Explain what we can and can’t do. Most importantly, make memories together. He’s right, you don’t have to go places to make memories with them. We do movie days/nights. We play silly games on the iPad. We play board games. We find ways to create those memories that we will both cherish.

I know our health can take a lot from us, but it’s not just us that it’s affecting. Often times we push our bodies to exhaustion, pain and till we simply fall. We need to stop doing that. That does more harm than good. We need to listen to our bodies, we need to adjust what we do to be within our limitations. We need to adjust and adapt to what we do to have spoons to make these precious memories with our kids. I know it’s not easy, I know there will be trial and tribulations. There will also be laughter and joy. Our kids don’t need expensive things, or expensive trips. They need us, they need our attention, and time. Simple things can make great memories.

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Self Esteem Struggles

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

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

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

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

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

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

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

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

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

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Life, Insecurities and Strength

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.

-Much love to you all.

Annnnd.. We’re back!

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Hi all!!! I know it’s been a long time, unfortunately my actual website crashed, and I can’t retrieve anything from it! 😦 So, i’m starting over on here, while I rebuild a new one! So stay tuned my lovelies!

So, it’s been an eventful year!

Onto a quick medical update: It’s been a year of doctors, and revelations! I was diagnosed with Ehlers Danlos in May. The doctors are now fairly certain I have amyloidosis. So, we’re going through all the testing for that. They’re also pushing for an MRI to fully rule out MS. My gastroparesis is causing issues, but i’m trying to push through. My gasro is good, but now i’m searching for a motility specialist. Any suggestions for Florida, would be greatly appreciated.

One thing that’s been really heavy on my heart is the taboo topic of Mental Health. The depression and anxiety many with chronic illnesses suffer from. The way doctors brush off symptoms, and just tell us it’s in our heads. It’s unacceptable. I’ve heard some people, doctors even, say, ” Just be more positive”. Having a positive outlook isn’t going to cure an illness… This is why people who struggle with chronic illnesses, and mental health issues say; “I’m fine”. Because when we’re honest about how we feel and how we struggle, we’re told to think positive. It’s a bullshit statement. My thinking positively isn’t going to cure my autoimmune issues. So I’ll just continue on with saying; “I’m fine” because people don’t want to hear nor see the truth. I’ll hide behind the fake smiles, and carry on. Perhaps it’s because no one takes us seriously, no one lets us feel what we feel. We’re told to suck it up and be positive. #endthestigma

No, I’m not saying that being positive doesn’t help, however it is NOT a cure. It’s extremely condescending to tell people “oh just be positive, it’ll cure you.”, or “maybe be more positive and you wouldn’t be so sick.” Those are condescending statements made to people, by people that don’t understand nor care to. They make people feel ashamed for how they feel, they basically say, how we feel is wrong. That’s unacceptable.

I’ve had doctors, several in fact, comment on how positive I am. I don’t want others to feel down, or feel ashamed for how they feel and struggle, or brushed off because no one listens to how they feel. I’ve been there, I want to HELP them to share what they feel and how they struggle. We shouldn’t bottle up how we feel or struggle just so we don’t upset or offend anyone.

My motto is this: “Adjust, adapt, move forward”. That is what I choose to do when I face an obstacle. We need to be a voice, we need to find our voice. We need to stand up and say we’re not wrong, that our feelings are perfectly normal. We’re not something to be ashamed of, or to made to feel inferior. I’m working on launching a youtube channel, with blogs about this, and about my journey. I’d love to have collaborators. I’d love get this movement off the ground! I’d love to make this huge! YOU are not defined by what you have, you are defined by WHAT YOU DO and WHO YOU ARE!

Let’s be voice, let’s fight the stigma we face. Let’s be beacon of hope to those struggling to find their voice!

#findyourvoice, #beavoice, #letsbeabeacon, #dontbeashamedofyourstory, #beinspired, #endthestigma

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Saline and me..we’re friends :-)

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

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

First night of Dysautonomia International Conference

Day 2 of conference with custom cup by Jilly's Decals — Day 2 of conference with custom cup by Jilly’s Decals

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

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

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

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

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