From a Spouse’s Perspective

 

b3146938140004a7891313a9ac866e49

Last night as I sat reading an article on The Mighty, about partners of those that are chronically ill, I was hit with curiosity.  We hear so much of how being chronically ill affects us, but how does it affect our partners? How do they feel? What is this like from their perspective??   I quickly sent a text to my boyfriend, I explained I wanted to write a piece, essentially from his perspective. He said he’d love to help me. So, I sat down, typed out some questions and emailed them to him late last night. By 7:30am I had his replies.

Let me preface with this, we met in September 2011. He was there from day 1 when all of this started.

Without Further Ado,

From a Souse/Partner’s Perspective:

1) When at first when my health deteriorated, how did you handle or adjust to that?
I handled it like every other day and I don’t feel like I had to make any adjustments that I didn’t want to make on my own.
2) Did/Do you ever feel overwhelmed? If so, how did you deal with it?  
I never feel overwhelmed personally, but I do feel bad that you get stuck, probed and prodded regularly by nurses, and doctors. You’re shuffled from specialist to specialist, all while hoping for answers. 
3) Have you ever felt helpless? Being my partner and unable to fight off this monster of a disease.
No I don’t feel helpless because you’re the strongest person I know and if anybody can get through this, you can. 
4) What is the hardest thing you’ve had to face in dealing with my health?
I would say the pacemaker scared the living hell out of me. That’s dealing with the heart, so many risks with that. It was kind of hard to handle but you amazed me with how you handled it like a champ.
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?
I want the truth about how things are, no matter what, your love and well being are my first priority.
6) What is your biggest frustration in dealing with my health?
My biggest frustration in dealing with your health is that sometimes your attitude on life gets to me. The eating/drinking issues, you won’t do it some days because you know how sick you’ll be after. So you don’t want to do it. That you won’t do the feeding tube, even though you need it. You let your family talk you out of doing what your doctors suggest. You also don’t see yourself as beautiful, you feel like the feeding tube, will make you less beautiful to me.  Scars, or a feeding tube won’t make me love you any less, or see you any less beautiful and amazing. That’s really frustrating for me. 
7) Being a caregiver to your girlfriend, have you ever resented the role?
I never resented the role. It’s a role that I choose to be in, because I love you. 
8) If you could tell me anything about how you’ve seen my struggle with my body, what would it be??
Nothing, your body is flawless. Scars tell stories and you have a lot of stories to be told. Your never ending strength is amazing to witness. 
9) What’s the most vivid memory you have of dealing with all this?What memory sticks out the most?
The day you got your walker. I felt you used it as an excuse to give up on physical therapy, of getting better, stronger.. You have problems walking yes, you tire easily, but I could see that you wanted to give up, instead of pushing through to overcome it. That was hard for me to see. 
10) What’s the hardest thing you’ve had to deal with in regards to watching me struggle with my health?
When your self esteem drops. You’ve grown stronger in who you are, you’ve found your inner strength, your voice. You inspire people with your words, and your realness.  However, Nothing about YOU has changed, you’re the same person you were when I met you. You don’t see the beauty I see when I look at you.  That’s hard for me, that you don’t see what I see, what others see. 
11) If there was anything you could change about my health or how I see things, what would it be?
Your health does not bother me, but how you see things does. Open your eyes, look around, you have a lot to live for. You have a lot to be happy about. 
12) Have you ever wanted to walk away, leave? 
I didn’t think that was an option. A real man or woman would stand next to their partner no matter what.  
13) If you could give spouses/partners new to this any advice, what would it be? 
Work hard with what you got, and above all find happiness and peace within yourself.
Reading his replies, it really put things into perspective. It made me see myself with different eyes. This man, he’s loved me unconditionally for 7 years. He’s held me as I cried, he’s calmed my fears. He was there through cardiac ablations, my passing out, losing strength to walk. He’s seen the good, the bad and the hell. He’s seen me angry, cry, and grieve over losing my healthy body. He’s talked to me as I had convulsion like episodes, he calmed me when I was upset. He reassured me when I was scared. He was my strength when I wasn’t strong.  Most of all though, he’s loved me when I couldn’t love myself.  He’s watched me as I slept to make sure I was still breathing. His never ending strength and love have really helped me grow as a person, it’s helped me grow into myself. He’s encouraged me, embraced me, challenged me, and loved me. He has pushed me to do things I love, to do things i’ve dreamt of. He’s my steadfast rock, my cheerleader and my biggest supporter.
It’s not easy being with someone that has many health issues, but as he said, nothing about that person has changed. Love is love. Love them wholeheartedly. Love them despite it all. Love them through the good and bad. When they feel like giving up, lend them your strength, cheer them on. I assure you, your love, strength and encouragement mean everything to us.
So to my amazing, loving boyfriend, from the bottom of my bionic heart. Thank you for all you’ve done for me, all you do for me, and all you will do in the future. Your encouragement and love mean the world to me.
Grá Go Deo,
A

End of the Year… Reflection

cooltext307994895026427

 

I’ve spent the last week or so reflecting on my year. My 2018 started out promising..it seemed to have spiraled a bit!

January was interesting. It was probably when I first started having doubt about getting married. By March, I was thinking of my ex boyfriend, dreaming of him more often, and really started second guessing the wedding. Though I pushed forward. My health was up and down. Dealing with Emergency laparoscopy in May, then a HUGE HIPPA violation at the hospital post-op. Which left me reeling, and extremely upset. May brought me un June, and my proteins levels in my urine were climbing, thus an emergency renal biopsy was done! This led to the discovery of my  having Thin Basement Membrane Disease. My nephrologist put me back on iv fluids, lactated ringers to be precise, 3 times a week.

The summer was busy with wedding stuff and keeping my son entertained. Dealing with my health and exhaustion. Spending time with my son. August prepared us for Back to School. August was the start of the spiral. I ended up canceling my wedding. Ending my engagement. So much has happened since then.  In, September I reconnected with someone from my past, someone whom I’ve loved for 7 years. October, November led to may seeing him for the first time in 5 years. What an emotional moment that was. It had to happen though, we both needed to see each other, say what we both needed to say to the other that we never got the chance to.  December led to health concerns, reconnecting with love, but most importantly time for reflections. It also led to my starting therapy. Therapy has been a godsend for me. It’s allowed me to really work through my emotions, and process it all. It’s a safe place for me to just unload my concerns, emotions and everything.

December also led to my son being diagnosed with Autism Spectrum Disorder, High Functioning. We suspected it, having some answers has been amazing, but learning and navigating things with him is hard. I’m determined to learn all can, and find ways to help him be the best him he can be!!! We attended a football and hockey game! He’s starting soccer, he’s excited, but he’s also well aware of how overwhelmed he can get. We’re trying to find techniques for him, to make things a bit easier. It’s a learning process, we’ll get through it.

I’ve spent the last few months reflecting so much. Reflecting why I made the decision I did all those years ago. I’ve thought that maybe I should leave again, maybe he deserves someone worthy, someone not sick.  I don’t want to be a burden. I’ve struggled with depression the last few months, especially the last month. Christmas was hard, for emotional and financial reasons. There’s days I feel like a failure as a mom. There’s days I cry at all I have to deal with. Days I feel like a failure as a girlfriend. My biggest biggest thing, is my self esteem. it’s such a struggle some days. There’s times I feel absolutely stunning, and others I’m like “WTF, what does he see in me?”… He tells me every day i’m beautiful, but he said this: “It doesn’t matter how much I say it, until YOU believe it for yourself”. How right he is, no matter how much he tells me i’m beautiful, it won’t matter unless I start to see it and believe it! My depression is sinking, it’s swirling around me. I sit here and cry wondering how I left 5 years ago, how I walked away from someone that loved me so unconditionally. I’ve become stuck in that loop. Instead of seeing he’s here, he’s still loving me, i’m stuck in the why, i’m stuck on the feeling like an annoyance, feeling like a burden. I know i’m not, but sometimes, in that moment it’s hard to see past it. It’s a struggle lately, a struggle sometimes I can’t overcome.  I refuse to walk away again, no matter how string the fear is, no matter how scared I am. I can’t walk away from him again. If I do, i’ll lose him forever, i’ll lose my heart.

This year was full of struggles, full of hard decisions I had to make. Full of trials and tribulations, tears of pain, tears of laughter, tears of love. Ending my engagement, but finding my way back to someone I loved so fiercely, it’s scary.  I’m working to let it all go. I can’t control everything, I can’t control the future. What I can control, is myself, my feelings, my reactions. I control me. I am choosing to let go of my insecurities, to let go of my fears. I’m ending 2018, i’m ready to let it all go. Let all the hell of this past year go. Let the self esteem struggles go. I’m choosing to wake up tomorrow, Jan. 1, refreshed, and on a new page for the next chapter of my life. I’m choosing to live, to be happy, to be loved! I’m choosing to let go of negativity, to let go of those that don’t bother in my life. I’m choosing to surround myself with supportive, loving, understanding people. I’m writing my story, i’m sharing my soul. For I have so much I wish to do, I refuse to be held back any longer by my fears or my insecurities.

RELEASE-POSTER-300x206

2019 is going to be my year. My year for laughter, for friendships, for love, for inspiring others, for travel. 2019 is going to be the year I decide to move past the fear, and fully embrace who I am, fully embrace the past that I can’t change, fully embrace the future that is yet to happen. I am choosing to end 2018 by letting it all go. I choose to follow my path, be positive, happy and loved! I am choosing to let go and let God. If I don’t let go of the fear, I won’t live. I won’t accomplish anything I wish to, for the fear is holding me back.

I’m loved, i’m blessed, and without a doubt, you all are loved as well. You’re never alone. If you ever feel that way, reach out to me, I will listen. I will be here. Together we can build each other up.

Be you! Be Fierce, but most importantly, be true to yourself. Never give up your hopes and dreams. Lets all start 2019 off full of hope, full of dreams.  My story is just starting…stay tuned…

 

The-Key-to-Change-is-to-Let-Go-of-Fear-e1422087356103

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!

1486068-Eleanor-Brown-Quote-Rest-and-self-care-are-so-important-When-you

 

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.

 

proud

 

-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.

Im-Back

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!
1623632_10153097568405760_4978793239682675346_n
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!

ab5da8ca611fb6a6514f646ef03e46bc

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!

hospital5

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.

cherish-every-moment-of

Words are powerful..

words

 

Since I’ve gotten sick I’ve heard my fair share of judgement and criticism. It’s never really bothered me before.

My family is divided on my illness. My mom wants me to move near her so she can help with me. My dad thinks I should stop all my medication and exercise, knowing I can pass out at any minute. I’ve completely changed my diet, lost weight, and have difficulty tolerating food. But to my dad this is just something exercise can fix…How? How would it help if I can’t even get the nutrients I need?

Words..people use them knowing the power they hold. I’ve been to Vanderbilt, I’ve been to Cleveland Clinic, Johns Hopkins. They all agree something is causing my problems, they all agree I have abnormal test results. That I have small fiber neuropathy, autonomic dysfunction, chronic migraines, fibromyalgia, IST, NCS.. But you know what?? Those don’t define me.  I’m more than my illnesses. If he became too angry, or depressed in seeing that, that’s his problem. I could only fight his darkness for so long on my own.

So I say to you. Watch your words, for they are powerful. They can bring love, sadness, and anger. Love.. happiness. Let’s focus on our words bringing those out in people around us.

proverbs 3125

Feb to March….CRAZY!!!

Hello my dear readers!!! I’m sorry for the time in between posts!! I started having a difficult time, and just became withdrawn for a while. Never fear though, I’m back!!!

February was a difficult month. I was sick with bronchitis for what felt like forever! My son became sick, My energy levels were non existent. Just rough. Then we eased into March…and it hasn’t been much better!!! LOL But that’s like for those of us that are chronically ill, isn’t it??!! So here’s some updates!!!

On February 10th I had my disability hearing…..And the judge ruled completely favorable for me. He was very thorough and understanding. I was incredibly bad that day, having already fallen twice at the Social Security Office, and cut my leg as a result of landing on something. I had a migraine, and it just wouldn’t go away!! The pain was also at it’s peak. I was in tears by the end of my hearing, which lasted 1.5 hours. My lawyer was great at helping me stand up and sit when I needed too. I nearly fell a few times, but he caught me. So I walked out of the hearing, well more like limped and half falling, with a sense of victory!!! The judge said I would get Medicare starting June 2015. That’s a relief, because my insurance payment every month is awful!! So that’s one good thing out of February!!!

My son experienced his first Valentine’s Day at school. He was so excited!! We did the little Valentine’s Cards and I made him write out the names of his class mates. Also picked on him for liking a girl. lol He got so much!! The kid did well!! Haha

I submitted my records to Johns Hopkins for second opinions with neurology, headache center, and was denied due to the dysautonomia. How can they just decide not to see me. I keep explaining I want a second opinion on MS and Lupus.  I was however able to schedule with Rheumatology and my Heart doctor!!! So there’s a positive, on June 9th, I’ll be in Baltimore…again…

March came and with that my Appointment at the Spine Center at University of Miami with a neurosurgeon. My mom decided to fly down here to go with me. So on March 10th we headed down to Miami. It was an awful drive, and my back and hips were hurting so badly from being in the car for so long. When we saw the doctor, I was very open and honest with him..which I don’t think doctors want at all!! I didn’t even get to see the neurosurgeon, I only saw a neurologist, who knew nothing of Dysautonomia. He dismissed our concerns about the spots on the Bone scan saying they’re nothing. Dismissed my Dysautonomia diagnosis, and questioned me relentlessly about things. I was in tears by the time I left. I couldn’t lift my legs up, and flex them they way he wanted, he acted as if I was just pretending to not be able to do it!! He then checked the trigger points and I was screaming from the pain!! He agreed with Fibromyalgia..Really?? Out of all my diagnoses that’s the only one you agree with??? My hip was out of alignment, which it often is these days, my back is in excruciating pain, as is all my joints..I hate walking because of the pain..What does he suggest??? Savella…and behavioral therapy and biofeedback….I nearly slapped him. I’m so tired of doctors labeling those that are chronically ill. I’m so tired of being treated as sub-human!! I’m a person, with a real disease and real pain!!!!  I left not any closer to an answer as to why my hearing is so affected, or anything else.

My internist is absolutely amazing!! He was upset at how I was treated. He is educating himself on Dysautonomia so that he can help me! He referred me to his colleague, a neurologist. He said they spoke, and she feels she can help me. So I see her March 25th. I was also referred to a hematologist due to some abnormal bloodwork. My internist really wants to figure all this out!! The hematologist was just as great, however the two hour wait was not. He ordered extensive bloodwork that day, and it was done right there!!! He suspects a platelet dysfunction.. like I really need anything else??!!!! LOL  He is also concerned with the hemangioma on my c4 and the Sclerotic lesion on my hip.  He’s curious why these things are happening.  I go back in a week for the results! Should be interesting!!

On a more positive note I registered for the Dysautonomia Conference that’s being held in Washington Dc July 11-14th!!! I’m so there!!!  I’ve also decided to spend the summer with my mom at her house in Tennessee. My son is extremely happy!!!

My son…oh bless my son… He’s reading!!!!! I’m so proud of him!!!!  And his birthday is coming up so I’ve been planning that.

I turned 28 yesterday..My dad took me out to dinner. Luckily I was able to eat. I got a cute new shirt , The Avengers, and a Hello Kitty bank from my son. According to my son, i’m now a cool mom for having that shirt! So I wore it to dinner. 🙂

My AVengers T-Shirt and Hello Kitty Piggy Bank!! Yes my puppy photobombs!!
My Avengers T-Shirt and Hello Kitty Piggy Bank!! Yes my puppy photobombs!!

It’s been a crazy few weeks, but such is life!!!

I’m really going to try not to get so withdrawn again and stop writing!!! I love to write!! Have fun and be good, till next time!!

I-am-stronger-than-you-ever-thought-Id-be

A cold..Turns into…UGH!

 

Hello my dear readers!! I’m sorry for the lapse in posting. I became ill with Bronchitis, and it is just kicking my butt! I ended up in Urgent care on the 24th, and then a week long battle to get antibiotics occurred! I finally ended up going back to Urgent Care this morning. They got me right in, and gave me a shot of antibiotics! At last!! The Nurse Practitioner I saw was great. She really listened and wanted to help me!

 I Ended up in the Emergency Room Last Thursday due to a migraine, my right eye was completely swollen shut, my left eye would barely open! That was even less fun! The doctor treated me like an idiot, and wouldn’t even listen to me about my having dysautonomia or what medications are dangerous to me! Needless to say I will not be going back to that hospital. While I was at the hospital, I was given Toradol and Zofran. I was more nauseous after receiving the medications than I was before! Not only that I seemed to have some reaction to the Toradol and ended up staying awake for over 36 hours!! I was so tired, but I just couldn’t fall asleep!!!

insomnia-1

So in my journey to help with my congestion I decided to take Nyquil the other night.. No… Bad Idea!! I had a horrible reaction to it. I was so scared. Oddly enough I only took barely half a dose! I became so hot, and uncomfortable I couldn’t sleep. Terrible! The doctor this morning said that I shouldn’t take any decongestants because of my Dysautonomia and my arrhythmia. So I stored that in my  memory bank…Nyquil Bad!!

Nyquil...Bad!
Nyquil…Bad!

So, I’m home resting, eating crackers, drinking gingerale..craving some actual food!! Hopefully these antibiotics knock this out of my system. Tomorrow I see my new neurologist for the first time, and an Internist I’m hoping to make my PCP. I’m hoping to make it a great day, or at least a so so day. My migraines are awful, and I feel like I always have a headache! Maybe someday I will be pain free and headache free!

Have faith, and never give up!!

Never-lose-hope

First Post, New Year!!

Hello My darlings! I know I’ve broken my promise about updating more often, and I’m sorry! Though I have good news! I’ve been busy working with my financial aid office at my school to get my financial aid back. I was on academic probation, and thanks to a dis-compassionate professor I lost my financial aid last fall. Luckily I was able to get it back, after contacting the Disability Services and working with them to document my illness and get a Memorandum of Accommodations. Once that was turned into financial aid, I was approved right away! I’m so happy I can finally continue with my education! Eventually I’ll have my Masters, or even PhD!

So.. what else have I been doing?? Well, I baked bread, yes home made bread! I was my first time, and I was nervous but excited. I used my wonderful Kitchen Aide mixer and let it do all the hard work! I do have to say for a first try it turned out alright! I need a bigger pan, and to cook it slightly longer, but it was delicious!

Home Made Bread
Home Made Bread

We also went to the park and launched my son’s bottle rocket! I know, what was I thinking?! Not to worry it was a little rocket powered by vinegar and baking soda! My dad was a big help, seeing as how I can’t really pour anything into a small little bottle, so he did it! I sat down and watched my son run around after the rocket and laugh! It was a very happy time for me! I’m not able to get out much, but it wasn’t a sunny day, or very hot, so I was able to get out, and enjoy the day with them!!

Mathew and His Rocket
Mathew and His Rocket

 

Mathew and Grandpa
Mathew and Grandpa

 

After that we got a bout of chilly weather, which just made things horrible with my pain, and I couldn’t regulate my body temperature! I went from freezing to burning up! Seizures a few times a day, it was just awful!  So I ended up staying wrapped up in my jammies and Dysautonomia hoodie, and laying on my couch with my puppy!!

Me and Lillie Belle
Me and Lillie Belle

I’ve had falls, quite a few, and one really bad one, to where i’m not so sure I didn’t break a rib! Such is life for me! I’ve got my health insurance finally straightened out! I’m working on being happy and working on my book! I’ve also developed huge problems with eating. I’ve been unable to eat more than a few bites for two days now. I have only been able to drink about 2-3 oz of my meal replacement drinks too. So.. I’m starting to worry about it a little. I’m so hungry, and thirsty, but every time I eat I get so nauseous, and the pain is horrible, and no it’s not gas! LOL.  So I’m guessing it’s time to see a GI! Oh the joys of Dysautonomia!!

My Meals!
My Meals!

 

 

That’s it for now my dear darling readers!!! Until next time, I bid you a wonderful day!!

Well Done My Friend!
Well Done My Friend!