My new reality…

 

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

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

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

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

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

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

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

Be+Empowered

What do I love about me??

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

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

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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!!

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
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
Day 3 of Conference
Day 3 of Conference

 

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.

Maria, Me and Amanda
Maria, Me and Amanda

 

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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Summertime..

Hello all. I’m sorry I haven’t written in a while. Things got busy and stressful. So much has happened in the last two months. The heat here is making things extremely difficult for me. I’m trying to stay cool, just not always easy!

My son graduated VPK!!!  I’m such a proud mommy! I’m not going to pretend that I didn’t tear up, because I did! It was such a special moment in my life. I rested for days, just so I could go. We had some rough moments during, but I made it through. He smiled so big when he saw me! He’s my biggest joy in life.

Mathew @ VPK Graduation 05/2014
Mathew @ VPK Graduation 05/2014

 

After school was out, we decided to spend some time with my mom in Tennessee. My mom drove the entire way in one day, 12 hours. It was so hard on me, and I ended up sleeping for nearly 2 days after to recover. It’s quiet and peaceful at my Mom’s. During that time we had an appointment with my Electrophysiologist in Virginia. I was diagnosed with POTS, and told that my HR is still out of control, and the my Atrial Tachycardia episodes are becoming more frequent. Yay! Though he did decide to start me on IV saline therapy to help.  After that we returned to my mom’s in Tennesse, to relax and just spend time together.  I ended up having to go to the doctor there for an emergency. My jaw had popped out of place, and the tendon was swollen and causing pain. The doctor expressed his concern over my TMJ, the severity of it. So I have to add another doctor to the ever growing team of doctors I see.

When we finally got back to Florida, I had a follow up with my neurologist. Yes, I went back to Cleveland Clinic. She agreed to do the infusions, and put the orders right in, even decided i’d get a picc line placed. Again.. Yay me… Not too long after that appointment I had to see my gastro. We had to change all my meds, and diet, again. My GERD is still uncontrolled, and i’m still getting sick when I eat. I’ve started the new medicine, but haven’t noticed any change. 😦 We are concerned I will have to eventually get TPN. I’m hoping to avoid that.

Finally the day came to get my picc line. Nervous doesn’t even begin to describe how I felt. I was terrified. I cried, was angry, and then resigned. I decided it’s just another thing i’ll have to adjust to in battling this illness. As long as I fight it, i’ll never give up.  The nurse that did the picc line was great. She really put me at ease with explaining everything. So without further ado… Here I am with the picc line! To say there was some pain and discomfort would be an understatement. It’s taken some time to get used to it. I’ve now had it for nearly 2 weeks, and sometimes I forget I even have it! lol We’ve decided to the the saline infusions at home. Which is comfortable to me. My nurse is amazing, the entire agency is amazing actually!! I’ve done one infusion already, and what a difference it made!! I’m hoping after the 4 week trial period we move to everyday, or a few times a week!! Unfortunately though, I’ll be getting a port.

Picc Line!!
Picc Line!!

 

We’ve had a few bumps in the last few months. I’m still trying to get answers on why all this happened. I know I may never get them, but i’m still going to try. I’m still working on being positive, and being the best mother I can be. I’m hoping to make a difference in the world. I want to inspire others. I want my son to know my love for him. I want my family to know how much their support means to me. How much my friends have helped me. I’m not losing focus on life, nor am I going to give up.

Stay fighting, and surround yourself with positives. 🙂proverbs 3125

Feeling anti-antibiotics!!

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!!

antibiotics-logo-final

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!

Smoky Mountains- Gatlinburg, TN
Smoky Mountains- Gatlinburg, TN

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!

proud

 

 

Holy H. Pylori

Hello Everyone!! Sorry I haven’t been around. I’ve been having some issues eating and taking in fluids. I had a Gastric Emptying Study done and according to my Gastro it is borderline. at 4 hours, only 72% of my food had left my stomach. Interesting to know. I’ve also finally gotten an endoscopy done. Turns out I have H. Pylori. Oh Joy!!! I also have white plaques in my esophagus, and gastritis. Very fun.. NOT. I was started on Antibiotics to get rid of the H. Pylori. Let’s hope it works.

I recently returned to Virginia to see my heart doctor. It was a very important and necessary trip.  I’m also spending the summer at my mom’s in Tennessee.

I’ve learned that not all doctors care about their patients. This is truly horrible!! My gastro is amazing, as is my internist. My neurologist is also amazing! I’ve had no medication for my migraines (that don’t interfere with my POTS), and my legs are getting even weaker!! I keep hoping though! I’ve also been considering the use of a wheelchair. The pain when I walk is becoming unbearable. You learn to hide it, but i’m starting to not be able to do that anymore!

Let’s all focus on the good, and think of our blessings in life. new day