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 I started having a difficult time, and just became withdrawn for a while.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

Vanderbilt- At Last

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My son and I before leaving to the airport

 

I am home from Vanderbilt. It was a long appointment, and a very difficult one for me.  The travelling was one of horrible experiences to date. Leaving Ft. Lauderdale airport,  I was refused a wheelchair because I refused to check my carry on bag. By the time I made it to the gate I had nearly fallen 3 times, and was completely exhausted.  The lights and sounds made my headaches excruciating.  Being in an upright position for so long, affected my spinal headaches, so that gave even more joy to my travelling. The travelling had worn me down, and I was at my worst by the time I got to Vanderbilt Thursday morning. I stayed positive, rather them see me at my worst, than my best! Because of the cold, I was seizing even more than normal, I was also falling a lot more than normal. I arrived at  Vanderbilt  at 8:30 am, I was tired, nauseous, shaky, and just feeling like crap. We headed up to the 5th floor, my appt was at 9:30, but due to not knowing the area or traffic we left our hotel a little too early! We checked in, and sat down to wait. I was called in for the autonomic testing. They were to do the Valsalva testing, breathing testing, and a tilt table, minus meds.

AFT Testing at Vanderbilt
AFT Testing at Vanderbilt

The nurse shut off all the lights for me, due to my sensitivity to them.  As the nurse finished hooking me up to the heart rate monitor, I started seizing. The pain was horrible, and my mom was trying to comfort me through it. Apparently I stopped breathing during it, so that scared her. According to my mom, who is a nurse, and the Vanderbilt nurse my heart rate went from 67 to 156 during the seizure.  After that I was out of it for a few minutes. The nurse continued hooking me up to the monitors. She couldn’t get a reading on the continuous bp cuff on my finger as my hands were so cold, she had to use hand warmers and then use a baby cuff. LOL.  As we started testing She was patient and comforting. We did the breathing test, where I had to breath against resistance, my goal was to hit 40, I didn’t even make it to 20. OOps. I became dizzy, it was awful. The other test was breathing in through nose and out through my mouth, I kept mixing it up and getting confused, and dizzy. This got me frustrated and near tears. After that was the tilt table. She tilted the bed up and almost immediately my nausea worsened, my chest pain worsened, and my dizziness increased. I kept saying I feel like i’m in Alice’s rabbit hole, according to my mom. I became very disoriented and confused, lethargic really. The test was finally over!  After that we could eat and wait for my appointment with Dr. Robertson.

 

Post Tilt Table
Post Tilt Table

So the moment we had been waiting for, for 6 months was finally here!!  We were taken back around 2:15, pm to meet with Dr. Robertson. I immediately liked him. He listened as I explained everything, how I felt, my daily routine, my limitations. He genuinely cared. He then asked me questions, and my mom questions. I tried so hard to keep up, but I kept getting confused and repeating myself. He was very patient with me. He then started his exam of me. He paid very close attention to my hands, in particular to my fingers, checking for inflammation. He also was interested in the severity of my photosensitivity. We spoke of my symptoms and how they affect my life. What’  I’d like to change. I explained I want to walk down the aisle, I want to dance with my husband for the first time. I want to be able to have a conversation with someone face to face without getting confused. I want to me able to go into the sun without feeling pain or passing out. He looked through the records I had with me from Cleveland Clinic. He was very interested in my case. He says I definitely have an autonomic dysfunction, but that’s not the only thing going on. We asked about MS. We waited with bated breath. His response was what i’ve known in my heart. That it’s a huge possibility. He suggested I get my MRI of my spine, he feels that’s where the lesions would be considering what is affected in my body.  I still don’t know if I’ve processed everything. He wanted my records, since Cleveland Clinic did not send updated copies prior to my appointment. I told him I will make him copies, and send to him. He said he really wants to go through my records page my page, and really read them and make his conclusion. I walked out  numb, not knowing to feel. He wants to stay in touch, and keep him updated on what we find.  He was so wonderful. By the time we left it was after 4:30pm.  I made the copies Saturday, and sent them via fedex, they will arrive tomorrow. I’ve already called his office and told them.

Mom and I at Vanderbilt
Mom and I at Vanderbilt

My Cervical MRI is scheduled for Next Monday, as well as seeing Dr. Tandri at Johns Hopkins. Finally, i’m getting closer to answers. I’m scared of what the MRI will show, I’m scared that in my heart I know what it will show, and you know what?? It’s ok!! If it is MS, I still won’t let it beat me down!!  My mom was so supportive through this trip. My dad has been amazingly supportive at home. My boyfriend worries so much and supports my fight every single day. My son loves me. Despite this illness I have a lot to be thankful for. I’ve accepted I may never know my true illness, while it will be awful, and could be dangerous, I have faith. I have the love and support of my family and friends, for that I thank you all. Those that have been on this journey with me, cried with me, laughed with me, I thank you from the bottom of my heart! My journey isn’t over. I still have a ways to go, and I’ll continue this fight as long as I can.

 

proverbs 3125

Down Days

Never-lose-hope

I have had a few good days then a lot of bad days recently. Yesterday I spent pretty much in bed or on the couch. I just had no energy, and the pain was hell. I saw the Rheumatologist on Wednesday, she is now checking for Sjogren’s Syndrome. Joyous..Another possibility to add to the list. She was great, and put me at ease. She was very thorough and explained as much as she could to me, and answered all my questions. I even broke down with her.. “Is this my life now?” I asked her. She held my hand and said “Sweetie, it could be, it could get worse, could get better. Just remember your amazing strength and beautiful son. Never give up.” I couldn’t help but cry. How many doctors would help a patient like that? How many would take the time to truly care???? I felt honored to have her as my doctor. The next day was spent with the Electrophysiologist in regards to my pacemaker. He confirmed my biggest fears… That the previous surgeries were not necessary in any way, and I’m not completely dependent on my pacemaker. He referred me to a specialist. One that is an expert in POTS and Dysautonomia. He put me at ease, and helped me to not be so scared. It just means more traveling, for more doctors. 

Yesterday I woke up in an awful mood. I was jittery and just on edge. I just couldn’t shake the feeling. I was so tired, I wanted to just sleep the day away. I pretty much did. Between that and the pain, I didn’t want to do anything. Though I always push myself, i’m learning when to push and when to back down! I’ve still not accepted this. Accepted that I now have limitations, and I can’t do everything I used to. That I am, as a person, changing. I’m scared of losing who I am, the woman I’ve always been. I don’t want to do that. I’m terrified of it. I’m so scared of accepting things that i’m just avoiding, ignoring. I know it’s wrong of me to do. I know in time, I will finally accept things, but right now, I just can’t, I refuse.  I want love, a partner, someone special. What if I never find that?? I’m scared of that. I’m scared of being alone through this.

It’s a learning process. I’m still new to all of this, and I will continue to search for answers and continue to do what I can to keep my independence. I will not let this control me. I will not let it beat me down, I will not let it take the woman I am. I’m learning.. The woman i will become, she will still be me..a stronger me, a fighter. That’s what I am.. That’s what i’ll do. Fight, Remain Strong, and through it all, never lose faith in myself, God and my family.

 

Painful Day

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Today I woke up and was in tremendous pain in my hands and legs.. I had problems speaking. Which is a new problem. It’s as if there is a disconnect between my brain and mouth. I just speak gibberish sometimes. It lasts a few minutes, then i’m fine. Today feels like it’s going to be one of my really bad days. I’m hoping not. I have way too much to do.  I’m visiting my mom in Tennessee for a week, but before that I’m spending a few days with my best friend in Tampa, Fl, (I live on East Coast, FL).  I spoke to someone recently, very dear to me. Like a second mother to me. She told me chronic illnesses are awful, and that I’m refusing to accept it, she’s right. She knows me so well. I’m terrified of accepting that this could be my new normal. Is this truly how my life will be from now on?? Medications to control different things???  She listened as I cried, and screamed out my anger and frustration. She has always been my rock. She’s right, right now, i’m going through every emotion I can regarding this disease. It’s alright for me to be angry, for me to feel lost. I feel as if i’m losing the person i’ve always been. I’ve tried to remain strong and not show the emotions i’ve felt, the anger and grief over this, but I couldn’t keep them bottled forever.

Doctors appointments are insane. I see the Rheumatologist the 24, the Electrophysiologist (special heart doctor) the 25, My EMG Nerve Test the 30, and see the GI May 3, since I have gastropareisis.  Gosh, I never thought i’d have to see this many damn doctors.  The good thing is, if something happens while i’m out of town, i’m an hour and a half away from the Autonomic Dysfunction Treatment Center at Vanderbilt. 🙂  

How can I accept that this is the new normal for me??!!!!! HOW??? How do I go from the independent, always on the go woman, to barely able to walk through the grocery store, need help getting in and out of a car woman I am now??? I can’t….I can’t accept this, not yet.. Then I get so angry that i’m so alone in this. Where is my partner? Why isn’t he here! Will I have to suffer through this alone? Will I never marry? Silly questions to think about, but I think about them. I want to marry, I want to walk down the aisle towards the man I love and become one. I want to find a man that loves me despite this disease. Does such a man exist? Will I be in a wheelchair by end of the summer this year??? So many unanswered questions for my Type A mind.

This I do know. I’m strong, I’m loved by my family and friends. I have an amazing support system. I have a beautiful son. I have my faith. I will be fine. I will accept this in time. I will have to. For I have no other choice.  

Don’t take the small things in life for granted. You never know when things can change, and how much they change. Love with all you have, all you are.. And you know what? It’s ok to be sad, angry or frustrated!! We don’t have to be strong all the time. We can cry! We can lean on our spouse. I’m always here for those that wish to talk, share stories!

Be safe, and be free my readers! Until next time!

Letter to My Dad

my dad, my hero

 

The past year has been very difficult. I currently live with my Dad, as it’s easiest right now. Yesterday was his birthday and well, I decided to write him a letter expressing my thanks, love and gratitude to him. I want to share it with you all.

 

Dear Dad:

Happy Birthday!!!! I know this past year has been incredibly difficult. Something you never thought you’d have to deal with, me either. I just want to take this moment to say how truly thankful I am for all you have done for Mathew and I. You’ve been amazing. I know I don’t often show it, but I try to.

I try to shield the pain, and the worse of the disease from you, so you don’t have to see it. You shouldn’t have to, but you’ve still seen through it and known when I’d needed a break, or to simply lie down for a few minutes. This past year has not been easy on any of us, but you’ve stood up and been such a huge help.

You’ve always been the one I’ve gone to for support, for advice. You’ve always been my Hero, but the last year you’ve also became my advisor, mentor and caregiver. Things you shouldn’t need to do for an adult child. You though, you stepped up, and do what needs to be done. You worry like I’ve never seen you worry. I hate worrying you. I hope someday you won’t worry. This past year, you’ve been my rock, I’ve leaned on you more than I’ve ever had to, thank you for letting me, thank you for being there.

You, are the definition of an amazing dad. You have been then to lend me strength when I need it, motivation to push myself, and not give up. You’ve been there to love me, despite my frustration and anger at the world right now. You’ve taught me to accept what I can’t change, but to not give up the fight. You’ve taught me the true meaning of what it is to be a parent. I thank you from the bottom of my heart.

I couldn’t have asked for a better Father, a better Dad.

I hope to beat this someday, but if I don’t, know that even if I’m bound to a wheelchair. You’re still the best Dad in the world and you help me every single day, whether you notice it or not.

I love you Dad!

Ambre

 

My dad has been amazingly supportive, especially the past few months. I can’t imagine what I’d have done without him there lending me the strength I needed. I’m blessed to have such an amazing Dad.

A Jittery Day

ShakyGuy-Shakiness

Hello Fellow readers! Today dawned a new day, bright, sunny, crisp day! I knew upon waking it would be one of my “jittery, and difficult” days.  It’s been a busy few days, so I knew it would happen, so I set today aside to rest. Saturday was an Easter Egg Hunt with my Son; Sunday, Church Services and Easter dinner; Monday was my son’s birthday; and yesterday was my dad’s birthday! Like I said busy days!! Life has hit me in so many unexpected ways. So many things I’m experiencing I never thought I’d go through. I’d never wish them on anyone else.

On a good day I still struggle to walk, and tire easily, and stumble through a conversation. However, on days such as today, I have trouble walking, trouble talking, headache, brain fog, pain in my arms, legs, and hands, and dizziness. Days like today, I just rest. It doesn’t make me lazy, it makes me aware of what’s going on, aware of what could happen if I were to push myself. The shakiness in my entire body sometimes becomes too much and all I can do is lie down and rest.

Some people told me to get over it, to exercise, to stop making it up.. It hurts to be told that. Just because they don’t understand, doesn’t mean it isn’t real. What I suffer with, and what others that have what I do suffer with everyday is very real and very painful. Educate yourself before being judgmental. I’ve been stared at, gawked at, and pushed over by people while out.. It’s amazing to me how they treat that which they don’t understand. I’ve become kind of reclusive due to this. But why should we hide ourselves for their ignorance??? We shouldn’t! We should stand tall and proud at our strength and courage in how we handle and live with this disease everyday!!

So my readers, stand tall, be proud of who you are, no matter your limitations, or disabilities. For you know your strength and courage. For we are warriors in battle of our every day lives!!! I proudly call you friend, proudly call you by my side as a fellow warrior. We’ll fight this together, lean on each other. Support systems are a necessity when dealing with this disease. We will become our own system!

difficult day

Welcome

iWelcome1

Hello! Welcome to my blog! I have decided to blog my  trials, tribulations and journey in dealing with this my everyday life.

For starters, Let’s answer:

What is Dysautonomia:

         

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain upright) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can be life threatening. Each dysautonomia case is unique and treatment must be individualized and may include pharmacological and non-pharmacological methods. Patients should be evaluated by a physician who is well-versed in the recent treatment modalities.

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The afflicted child may visually appear to be as healthy as those around him. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after a stressor or a physical activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions.

Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families. Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, despite the betrayal of an uncooperative body, these young individuals face life with profound courage and incredible strength.

Many that deal with this suffer in silence. We can be silent no longer. I’m 27 years years old and this has affected my life so deeply, so much that I’ve had to learn to do simple tasks differently, to make it easier for myself. 

I will share my struggles with the world, in hopes of raising awareness for this. In hopes that more will see that those who suffer in silence, need a helping hand as well. We are strong, because we don’t want to shoulder the pain with anyone else. We take it on ourselves.

Join me, on this journey, as I battle this disease. As I refuse to let it beat me.