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.

 

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!!

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!!

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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!

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