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? 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? Sometimes. 

3) Do you ever feel angry? If so, why? 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? 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 areSometimes I would prefer you to lie about the bad days, sometimes be honest. If you could give parents and kids new to this any advice, what would it be? 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?? 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? 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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Going Ghost..Don’t do it.

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

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

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

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

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

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

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

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

 

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Self Esteem Struggles

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

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

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

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

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

 

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

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

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

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

 

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From Dad’s Perspective…

I decided to do this post a bit differently! I know i’ve talked about my struggles with my health. I was curious about how my health has been a struggle for those closest to me. I sat down and talked to my dad, and really wanted to understand how he’s felt through all this.

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My dad holding me right after I was born. March 1986

He’s been my caregiver for a few years, prior to my fiancé coming into the scene. My dad is my hero. He’s a tough guy construction worker. He’s smart, funny, and a heart of gold. He’s always believed in me. My dad has been absolutely amazing through all this. He’s missed countless days of work to take me to countless doctors appointments, surgeries, and just to help me through the day. My dad’s unfailing strength has been a blessing. He’s been there to lend me legs, to help me eat, to just  listen as a I cry from it all, or from the pain. He’s seen the absolutely worst of this disease, and the days i’m semi ok.  So, I wanted to know how he’s handled all this, how he’s felt.

Prepare the tissues. Without further ado, He’s what he had to say:

1)      When I first moved down, and my health deteriorated, how did you handle or adjust to that?

I was upset and worried. I thought I could fix it. It was very stressful, I just tried to be supportive and help where I could.

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

Every time I access your port, every time we discuss what your doctors say. Lately I feel overwhelmed when you talk about making drastic changes to your life. I worry that you have a hard time now, adding additional things will just make things worse. That is not fair to anyone.

3)      Have you ever felt helpless? Being my dad and unable to fight off this monster of a disease. 

As a Dad, your job is to fix things. I am supposed to make things better for my children. I have to be strong for you and Mathew, it’s what Dad’s do.

4)      What is the hardest thing you’ve had to face in becoming my caregiver all over again?

The hardest thing for me is to admit I can’t fix this. Sometimes it makes me feel like less of a father.

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

It depends. I want you to be able to come to me if you really need to. I just have a hard time dealing with the constant negativity. It gets exhausting for me sometimes. You need to know I am there for you if you really need me though. I definitely want to know if there is anything I can do to help make it better.– (Author’s Note: i’m not always negative. I do have my days though.)

6)      What is your biggest frustration in ealing with my health?

Getting you to take care of yourself. Helping keep you positive. Making sure you make good decisions about now and the future.

7)      Being a caregiver to your adult daughter, have you ever resented the role? The sacrifices you’ve had to make to take care of me? 

Of course I have, I am only a man. That doesn’t mean I am angry or sad. We are all dealt a hand to play, How we play it is up to us. I have sacrificed everything in the last 5 years for you and Mathew. My wants and desires were not as important as making sure you two were ok.

8)      If you could give parents new to this any advice, what would it be?

All days are not bad. Enjoy what you can. Take the time to get to really know each other. One does not know how strong one is until they have to be strong.

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

You need to take care of yourself better. Exercise more, eat better (more consistently) keep what you have for as long as you can. Your son needs you.

10)  Do you know how much I love you, and all you’ve done for me? How your quest strength and your love have given me strength? 

I know you love me. I do not do what I do for the reward of your love. I do what I do because I can’t imagine doing it any other way. I was raised to take responsibility not shirk it. The love of you and Mathew is a bonus not the reason for my actions. The reason for my actions is my love for you and Mathew.

Reading his answers made me cry. His overwhelming love and support is immeasurable to me.  He does what he does, all he’s done for one simple thing, his love for me, for my son. Parents do what they have to because they love us. They guide us, challenge us, and lead us. They are who helps shape us. I am the person I am, because of my dad’s guidance. I’m a stronger person because of his strength and faith in me. My dad is quiet, he doesn’t shower us with affection or pretty words. He’s like a tree. He’s strong, unyielding, and helps us to grow. He’s the roots in my life, in my family.

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My dad and I, when I was 4 years old.

Whether you’re a parent, or a warrior of a chronic illness, share your emotions. Share how this has been for you. Open that line of communication with each other. Caregiver and patient, you’re a team. You rely on each other, for good or bad. Lean on each other, strengthen each other.  Most importantly, love each other.

It’s not always negativity, or sadness, or anger. There’s days of a plateau, days of good and sunshine and energy. Then theres the storm clouds, the thunder and rain of anger and sadness. Don’t lose yourself in the storm clouds. Don’t shut yourself off. Lean on each other. Remember, the sun always shines after the storm.

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With love,

A

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!

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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.

 

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-Much love to you all.

A.

 

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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I’m back… again!

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

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

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

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

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

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

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

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

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

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Hospital, Smoshpital

Hello all!! It’s been a bumpy few weeks, but i’m still standing! (Barely). First things first… My little boy started kindergarten Monday!! Such a bittersweet moment!! He’s growing up so fast! I may have shed a few tears! He’s my baby boy! 🙂

Mathew's First Day of Kindergarten 8.18.14
Mathew’s First Day of Kindergarten 8.18.14

I’ve been trying to stay ahead of my fibro and POTS flares, but not fortunate enough to do it. On Saturday, I became very ill very quickly. Around 11am I had a small low grade fever, by 6 pm, I had started vomiting, at 9pm my temperate had reached 103.9, and I was still vomiting.. I headed to the hospital. My PICC line was removed, and heavy duty antibiotics, Zosyn and Vancomycin were started. I was admitted before I even walked into the ER, thanks to my wonderful primary care doctor.  I still had a fever at 4am! Luckily it broke, and between that and the antibiotics, I slowly became better. I was still nauseous, but ginger ale and crackers helped. My amazing friend Amanda brought me oatmeal for breakfast! It was so yummy and just what my tummy needed!! I was luckily released later Sunday night!

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What a weekend!! I’m so glad i’m alright, the doctors are still trying to figure out what caused the fever and such. It was so scary.

On a positive note, I started my fall semester today, and hopeful it’ll be the best one yet!!

Being chronically ill can lead to feeling lonely or depressed. Surround yourself with loving friends and family. Remember you are a wonderful person, and deserve to be happy! Just because we’re sick doesn’t mean we’re less deserving!!

Stay sweet my readers!! Until next time!!