Live – Page 3

Annnnd.. We’re back!

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Hi all!!! I know it’s been a long time, unfortunately my actual website crashed, and I can’t retrieve anything from it! 😦 So, i’m starting over on here, while I rebuild a new one! So stay tuned my lovelies!

So, it’s been an eventful year!

Onto a quick medical update: It’s been a year of doctors, and revelations! I was diagnosed with Ehlers Danlos in May. The doctors are now fairly certain I have amyloidosis. So, we’re going through all the testing for that. They’re also pushing for an MRI to fully rule out MS. My gastroparesis is causing issues, but i’m trying to push through. My gasro is good, but now i’m searching for a motility specialist. Any suggestions for Florida, would be greatly appreciated.

One thing that’s been really heavy on my heart is the taboo topic of Mental Health. The depression and anxiety many with chronic illnesses suffer from. The way doctors brush off symptoms, and just tell us it’s in our heads. It’s unacceptable. I’ve heard some people, doctors even, say, ” Just be more positive”. Having a positive outlook isn’t going to cure an illness… This is why people who struggle with chronic illnesses, and mental health issues say; “I’m fine”. Because when we’re honest about how we feel and how we struggle, we’re told to think positive. It’s a bullshit statement. My thinking positively isn’t going to cure my autoimmune issues. So I’ll just continue on with saying; “I’m fine” because people don’t want to hear nor see the truth. I’ll hide behind the fake smiles, and carry on. Perhaps it’s because no one takes us seriously, no one lets us feel what we feel. We’re told to suck it up and be positive. #endthestigma

No, I’m not saying that being positive doesn’t help, however it is NOT a cure. It’s extremely condescending to tell people “oh just be positive, it’ll cure you.”, or “maybe be more positive and you wouldn’t be so sick.” Those are condescending statements made to people, by people that don’t understand nor care to. They make people feel ashamed for how they feel, they basically say, how we feel is wrong. That’s unacceptable.

I’ve had doctors, several in fact, comment on how positive I am. I don’t want others to feel down, or feel ashamed for how they feel and struggle, or brushed off because no one listens to how they feel. I’ve been there, I want to HELP them to share what they feel and how they struggle. We shouldn’t bottle up how we feel or struggle just so we don’t upset or offend anyone.

My motto is this: “Adjust, adapt, move forward”. That is what I choose to do when I face an obstacle. We need to be a voice, we need to find our voice. We need to stand up and say we’re not wrong, that our feelings are perfectly normal. We’re not something to be ashamed of, or to made to feel inferior. I’m working on launching a youtube channel, with blogs about this, and about my journey. I’d love to have collaborators. I’d love get this movement off the ground! I’d love to make this huge! YOU are not defined by what you have, you are defined by WHAT YOU DO and WHO YOU ARE!

Let’s be voice, let’s fight the stigma we face. Let’s be beacon of hope to those struggling to find their voice!

#findyourvoice, #beavoice, #letsbeabeacon, #dontbeashamedofyourstory, #beinspired, #endthestigma

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I’m back… again!

Hello my dear readers and friends! I know it’s been quite some time since I’ve written, and I’m sorry. I was not well, and had to take time to at least wrap my head around things surrounding my health.

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!!!

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!

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!

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

Day 2 of conference with custom cup by Jilly's Decals — Day 2 of conference with custom cup by Jilly’s Decals

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.

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.

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!!

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!

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!

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.

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!

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!!

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!!

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!!

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

End of the Year Review..

Hello my dear readers!! Tonight is New Years Eve. I’m home, ready for bed. LOL. It’s been a rough few days, this is not how I wanted to end the year. All I can say is, at least I haven’t landed in the hospital!

My goal for the upcoming year is to work on getting answers for my health, or as many answers as I can. I see my new neurologist next week, and I’m excited, yet nervous! I’m hoping things go well with him. I’m also working with University of Miami Neurosurgery Department to get an appointment with Dr. Green. They’ve been so helpful. I also hope to get a wheelchair. 🙂 And make it special, and just for me. I’m nearly completely unable to bear weight on my left leg due to the pain in my hip. I also have some silly goals I’ve set aside for myself:

1) Get the cooling bed so I can sleep!

2) Start crossing things off my bucket list, first is to experience the Northern Lights up close and personal.

3) Get special contact lens for my photophobia.

4) See my son graduate VPK (in May)

5) Write a book.

6) Make new and long lasting friendships.

These are just a few of mine! What about you?? Have you decided any resolutions for yourself??? This year has been very difficult, and at times i’ve wanted to give up, but I kept on fighting. Just as I will next year! Sometimes our trials seem so much, too much at times to handle, but we must remember, that we can overcome so much with our family and friends at our side. I want to help others as much as I can. To help others see that even though we battle this hell, we don’t have to let it consume us, we don’t have to let the darkness win. Let’s start this new year off right. With positive thoughts, and hope in our hearts! Hope for so many things, and people. Remember we are all battling something, who are we to judge others?? All we can do is be kind to one another, show compassion, and hope that our kindness helps someone else.

So my dear readers, as I mentioned in the last post, I’d truly like to make this more interactive. I’m working on making this an active site, and hopefully I can have that done!

Stay safe my dear readers, and Happy NEW Year!!!!!!!!

Day After—We Survived!

So, it’s the day after Christmas for those of us in the US..and guess what?? We made it, we survived the stress of the holidays! Maybe not by much, there may have been some falls, some passing out, some anxiety attacks, some arguments, but we made it! Lets all take a bow, or clap for ourselves! You know why? Cause dammit we deserve it! 🙂 This holiday was definitely hard on me, I was definitely a lot worse health wise this year than I was last year. I woke up Christmas morning, knowing it’d be a rough day, I was already exhausted from not sleeping well, and in a lot of pain. My son was already up and ready for presents, but first we had to have breakfast, and open our stockings from Santa, (he’s only 4). My dad made breakfast, our traditional Jiffy Blueberry Muffins, while my son and I opened our stockings. I got my cool gear cup, I’ve been looking for, in green! It seemed Santa didn’t want me to get sick since I got a lot of antibacterial wipes and hand sanitizer, he also got my favorite lotion, which is the only one I can use now, Cocoa Butter! Also Got some Hello Kitty Lip gloss, Yes Hello Kitty! LOL. Some other stuff as well. My son of course got all boy stuff, matchbox cars, batman figurines, tattoos, minions toys, finger skateboards, and candy..sigh.. candy and my son do not get along well, we limit his candy intake to the extreme. LOL. It hypes him up so much. So we finish our breakfast, while Pop (my dad) goes through his stocking, my son is literally jumping in his seat for presents. Telling us to hurry. And yes Santa did come and he had already gone through those presents. He got a remote control truck, an Iron Man toothbrush holder thing (haha like my description?), and an outfit for school.

Soo….finally Pop finished his breakfast, and it was present time, so we all head to the tree. My dad gets me a blanket in case I get cold and a pillow for my back. And we start handing out presents for my son..This kid made out like a bandit!! LOL he’s loved. He got clothes, Duck Commander PJ’s, TMNT PJ’s, another shirt for school, Skylanders game, Angry Birds Light up shoes, and Perry the Platypus shoe, a special book I made him of his Bible verses they memorize in school, a build your own bottle rocket, solar system model to build, a rocket ship clock that lights up the room and shows pictures of the moon or galaxy on the ceiling. So much science stuff for him. He loves science so much!!!! He was so excited! I got some sheep pajama pants, a Kinect for xbox, and a game for the kinect. My dad got some pictures for his picture frames, a journal for himself from me, and a very special gift from my son: a poem “Walking with Grandpa” we also included pictures of them together, and my son signed it. I converted it to a picture file, printed and framed it. He choked up with emotion. And hugged my son so tight. 🙂 It was all worth it.

After presents, I rested a little bit, then started an apple pie.. Yes ladies and gents, an apple pie..home made! It turned out so so delicious! My dad made a standing rib roast, rubbed with steak seasoning and horseradish sauce, it was so delicious. I also made mashed potatoes and green beans. My uncle and his girlfriend came for dinner. It was a wonderful day with family.

As I was preparing for their arrival I decided to shower..of course I fell in the shower and seemed to have hurt myself pretty badly. I have a stiff neck, and weird numbness/pressure along my spine, along with tremendous pain in my neck, spine and hips. Of course unbeknownst to me, my uncle and his girlfriend arrived just in time to hear me scream and fall. Oh joy. But I brushed it off and made the best of the evening! I was determined not to let it ruin the day. I found a new friend in my uncle’s girlfriend. I’m glad to have met her. We ended up talking and sharing stories of our horrible experiences with doctors. She loves my uncle very much and I’m so happy to see him so happy! We exchanged numbers and hope to stay in contact with each other! 🙂

So my dear readers, while some of us are suffering through the pain, remember there is always someone there to help you, to love you. It may be someone you least expected. Instead of focusing on the bad, let’s start looking at the good. We’re alive, we’re loved, we’re supported. In many ways we’re blessed. We may not have good health, or be rich, but we’re rich in love, and support. To me, those things are worth more than money!

Let’s start thinking about our New Year’s resolutions! I want to start making this site more interactive! I want to interact with my readers! Let’s start working together and reaching out to each other and focusing on good, not all the bad!

And the Results are in..Kinda

Ahh..Welcome back everyone! It’s another sunny day here, though a bit Chilly! So last time we were awaiting results from the CT scan…and boy did we get them!!! But before I get to them…like that..leaving you in suspense??!!

First things first.. this week my dad has had off, and he’s taken me to appointments, and Christmas shopping (much to my dismay), yes i’ve been the Grinch this year. I’ve just not been in the Jolly mood. But I’m slowly getting there. We’ve gotten some good presents for my son! He’s going to have a great Christmas! One thing I’m excited to give him is an old Musical Keyboard my sister found for me. I know some may be shocked that’s it’s used, but you know what? He’s 4! So I’m excited to give it to him. He has one at my mom’s and always plays it, so I’m thinking he’ll love this gift! I also got him some Duck Dynasty pajamas, because I’m just that awesome! 🙂 Ok ok. Enough gushing about the Christmas presents. My mom had knee surgery yesterday, and made it through alright. I’m so happy! I’ve been trying to stay active, but the pain isn’t really allowing it. The pain in my head, neck, back, hips, legs, hands is just becoming so much . To find out half of your Femur head is missing…wow that’s a lot to take in!!

Alright my lovely readers, now i’ll lift the suspense! Below are the results:

CT-Hip: Mixed Sclerotic Lesion in Left Iliac Wing measuring 2.8 x 2.1 x 1.8 cm in greatest dimension. Appears Benign, possibly enchondroma.

CT-Lumbar: Mild Multilevel loss of intevertebral disc height. L2-3 broad based posterior disc bulge more prominent at the neural foraminal with mild neural foraminal stenosis; L3-4 mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis; L4-5 mild circumferential disc bulge more prominent at the neural foraminal with mild canal stenosis; L5-S1 mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis. Non obstruction 2mm calculus in midpole of right kidney. Additional adjacent 1mm calculus cannot be excluded. Punctate calculus is also seen in midpole of left kidney. Mild Sclerosis at sacroiliac joints, limited visualization of iliac bones.

Bone Scan Whole Body- The Thoracic-lumbar junction has a mild convexity to the left. There is increased tracer activity to the right side of skull.

So… I had my CT scan done December 9th, and was sent for a Bone scan which was done December 16th. Tuesday morning my ortho’s office calls me to come in. So I go in, wondering what’s wrong. When my doctor comes in, she’s talking to me, and says. “have you ever had surgery to your head, or a head injury.” I tell her no. That’s i’ve been complaining for months to my neuro of these weird headaches and pain. She takes my films and puts in on the screen and shows me right there in my brain is something, and they don’t know what it is. She said due to what the bone scan looks for and my symptoms I need a neurosurgeon, and sooner rather than later. I ask her point blank what she thinks.. She says the words I feared the most. She doesn’t believe it to be cancer because it’s not showing up that way, but she said it could be a tumor that the tracers are picking up. So, she referred me to University of Miami Neurosurgery, as it’s one of the Top neurosurgery departments and it’s an hour or so away. Problem is, I lose my health insurance Midnight Dec.31. So I sit here and wonder..If the neuro had followed up on my complaints, or given a damn would this have been found? If it is a tumor, can anything be done??? As it is now, I’m losing my hearing, and my eyesight its worsening as is my speech, and other things. So.. How was none of this found by the renowned Cleveland Clinic??? Simple, they didn’t give a shit! I should be angry, but I’m not. Anger gets me know where. I’ve been set on this path for a reason, and I’ll continue on it. With my same strength and courage, with the love and support of my family and friends. This journey is far from over. Giving up isn’t an option.

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