Now I choose to live…

**Trigger warning. **

 

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The past month and a half has been incredibly difficult. I was supposed to get married, but things were called off. They should have been months ago… Ending a 2 year relationship and engagement wasn’t easy. However, the warning signs were there. The red flags were waving. I ignored them till i couldn’t anymore.  I made the best decision for myself and my son. I will not crumble or yield. I will not apologize for making the decision i did. I didn’t ask for emotional abuse or manipulative behavior, and I sure as hell won’t put up with it.   At first I was angry.. Now, I’m ok. I’m at peace with my choice, it’s been months in the making. I shouldn’t have let it get so far. My choice was the only one to make.  I know there’s anger on his side, but I needed to do what’s best for my son and I. I won’t apologize for that.

Emotional abuse is hell. Manipulative behavior is hell. Being made to walk on eggshells day after day so you don’t set them off, is hell. Suicide threats when things go south, or not getting his way.  I can’t live like that, I shouldn’t feel guilty for my feelings. But I was made to feel guilty. Constantly apologizing, constantly on edge watching what I say. I couldn’t be honest, because it turned into an argument, all the time.  Not to say we didn’t have good times, because we did. We had a lot of them, but those don’t outweigh the red flags. They don’t outweigh the potential for things to go so bad, so quickly. Sadly, they did. It was toxic. There was no fixing it. Lies and Deceit, and anger have no place in my life.  I put on a fake smile, and on facebook everything seemed perfect. Everything seemed fine… However a few were able to see past the facade I had in place. They saw behind the mask I wore.

His actions, and the stress led me to having a drink, then another. The first time in 10 years.. That night a phone call gave me a wake up call. (no one was injured. Just a blast from the past) That person knows me better than anyone else. He immediately understood my struggle, he understood my pain. He made me realize that this slip..it’s not me. I allowed someone else’s actions to break me. To break my strength. And that is utter bullshit. Two more nights, one drink each night.. Two more nights… I realized, while staring at my wedding gown that this..this relationship had been toxic. That I hid who I was. I let my strength die. My inner light dim. My friend caught onto it all. He reminded me of my strength, of who I am. Who and What I can be. He reminded me of the Phoenix within me. The power I always held. The dreams and hopes i’d always had.

My life has been difficult the last few years. Between my health, and other personal issues. My health has led to insecurities, and fear. It’s led to anxiety and depression. Through it all, I forgot to live. I just merely existed. I tabled my dreams, my goals, my ambitions, my faith and my hope.. Why?? Why did I do that?? Why did I hide part of myself? Why did I feel the need to?? There’s so many reasons. Reasons i’m not ready to share yet. Perhaps soon. I’m at a point where i’m almost ready to share it.. To bare that piece of my soul.

For now though, now i’m tired of just existing. I’m tired of not living!! I’m tired of being prisoner to my body! I’m tired of tabling my hopes and dreams. I’m tired of hiding who I am, so I don’t intimidate anyone. No more, More more will I just merely exist. I’m choosing to live. I’m choosing to travel. To love..oh to love fiercely… To smile.. Most importantly, to be happy! I’m choosing to not just exist. I’m going to live life to the fullest. I have faith, and hope.. With those anything is possible.

 

#imaphoenix, #spoonie, #emotionalabuse, #imstronger #iknowmyworth, #dontignorethesigns

 

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Going Ghost..Don’t do it.

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

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

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

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

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

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

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

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

 

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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!!

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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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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

Words are powerful..

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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!!

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