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

End of the Year Review..

NYeve 2013

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!

 

keep-calm-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!

focus-on-the-light

And the Results are in..Kinda

results

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.

Never-give-up-hope-..

Vanderbilt- At Last

2013-11-12 15.28.08
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

Dog and Sunlight= Laughs and Crawling

Here’s a laugh for ya! So I was inside relaxing, since I leave for  Vanderbilt tonight and I hear my dog barking like crazy. I  go outside not realizing how sunny it is. I’m instantly blinded, dizzy and just dropped to my knees. Now i’m crawling through the backyard on my hands and knees, to get her with my eyes closed because of the sunlight.. I had no idea what she was growling and barking at. So I finally got her!  30 minutes later she’s whining at the door to go out, I let her out thinking she has to go potty, but noooo not my Lillie Belle!!!!!.. Then, what do I hear????  The barking and growling again:  This time I went out prepared for battle..I had sunglasses and shoes,  and was prepared to crawl again if I had to dammit!  I heard hissing and the bushes were moving like crazy all down the fence WTH!!! ..She wasn’t backing down, I’m screaming for her, telling her to come, she wasn’t backing down. She was like “This bitch is mine! Mom”  LOL . I finally got her away from it, and in the house.  Then she starts pacing the living room whining to go back out and get it. So i’m assuming it’s a raccoon by her actions. lol. Our good little hunting dog!  I called my dad and he got a good laugh, though he was glad I’m alright. He said maybe a opossum. Maybe it’s a honey badger?! (for those that got the joke, good on you!)  Whatever it is, she wants it!  Hope this added some laughter to your day, because it sure did to mine!

Moral of the story: Just laugh, even if it’s at yourself. 🙂 I could have gotten angry, but what’s the point?

So..Who would win??? LOL 🙂

Lillie Belle     2013-11-09 20.22.02    Vs          raccoon The Raccoon

I’m back!

Hello All!! Sorry for the delay, I was going through a rough time. I’m working on bringing more positive actions and feelings into my life. This blog helps with so many things. I don’t want it to be all negative. I have bad days, but I am trying to work through them.

For my first new blog I’m taking it into a new direction!

Something I really love to do is write. I love writing. I also love reading, and cooking. Though cooking is sometimes difficult, I refuse to give it up! My goal from now on is to write about everything, and focus more on the positives in my life, than the negatives! 🙂  I have worked towards finding my faith again. I find it helps me find peace, and calmness in dealing with this disease.  In recent days I’ve taken a trip to Colonial Williamsburg with my son. He had so much fun! It was incredibly challenging, but you know what?! I did it!  We went for two days. I took my walker, and we sat whenever possible. We had so much fun. It was a very needed trip for us. I also spent time with my boyfriend, and it was so special. .. I feel so blessed that this man loves me so thoroughly to take that step with me. We’re also working on purchasing a house together! We’ve also been thinking of a few ideas for him in regards to work. He’s excited about future changes as am I. Together we’ll make it happen.

Most wonder how I stay positive. It’s not always easy, but I find it necessary to try to think as positive as I can. Yes I have this debilitating disease, it’s taken my independence, my legs, and some of my hearing, but it hasn’t taken my faith, my strength or my love. I’m still here, still living and that’s what I need to focus on! A friend of mine told me a huge surprise. Her mom has a few electric scooters, and they have offered to give me one. I was in shock, I cried. I told her I couldn’t repay her. She said my friendship, and love is all I need to give her.  So now I will be able to go on walks with my son! Go to theme parks, and do so much more! I’m truly blessed with my friends and loved ones.

As for you my dear readers. When life seems dark, light will always shine. You must simply look inside yourself, or a loved one for that light. Don’t let darkness overcome you!

focus-on-the-light

Ups and Downs

The past few weeks have been difficult. I’ve had my ups and downs. My biggest up being working things out with my boyfriend. I’m happy, and hope things continue on the path that they’re on. He’s been extremely supportive of my treatment and going to see new doctors that can help.

Today I had a consultation for physical therapy. It was a let down. The Physical Therapist felt at this time, aggressive therapy would not benefit me, and could potentially hurt me. As we don’t know the exact cause of my muscle weakness, how can we treat it? He gave me some home exercises to try, and see what happens. I will give it a go!!! I’ve finally accepted the fact I may be wheelchair bound, but what hurts me the most is my parents refuse to accept it. They push me and push me, i’m tired of just pushing myself so much to the point i’m in constant pain and constantly exhausted. I’ve begun having major trouble eating, and going to the bathroom, but not once did anyone suggest going to the hospital, after my doctors had mentioned it to be necessary. I just sometimes feel so alone, and upset. My friend Stephanie has been absolutely amazing through it all, as has my boyfriend. They both have truly been blessings. They are there to talk when I need someone, and to just be a friend, or confidant. I’m truly lucky for them.

I was referred to Vanderbilt, my dad was annoyed, he thinks i should take time away from the doctors to see if I get better… NEWSFLASH I’m not getting any better!!! I’m getting worse!!!! I can’t get into Vanderbilt until November, but I am on the waitlist. I just hope something opens soon. I hope my family becomes a little more supportive, because lately they really haven’t been.

I’ll stand strong though. I’ll keep fighting on, because i’m not going to give up.

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.

 

New Day

new day

 

 

Today was a new day. A new day for anything to happen! I’m currently visiting my mom in a small town in Tennessee. I’ve been here since the 14th. It’s been eye opening. I’ve been able to relax, and let go of the stresses and make decisions. I’m at peace. I’ve been working on not keeping everything bottled up, instead I call my one person, I know she’s there for me. I’m lucky to have her, and my family and friends. Their support is so appreciated.

I’ve been trying to get strength back in my legs, without having to use my walker all the time. I don’t necessarily need it, but It helps balance me on my bad days. I’ve been alright for the most part without it. Though it is tiring, and painful, i’m working through it. I’m determined! My hands are cramping more often, I no longer write unless absolutely necessary. My stutter comes and goes. But one thing that doesn’t is my strength and courage. My positive outlook on life has truly helped me with this. I have made a vow to myself to not dwell on the bad, but to look at the positives in my life. I’m alive, I have an amazing son, supportive friends and family. In all words, I’m blessed. Truly blessed.

There are days i’m feeling down, and sad. They don’t last, because despite it all, i’m a fighter. I’m a believer that though this disease is terrible, it’s something I was chosen to go through for my strength, and I will not fail.

Love is something I dream of, yet i’m terrified of it. Why would someone want to deal with all this, that’s what I ask myself. Then I think, I’m a great person! I’m an amazing woman. This doesn’t take away from that. I’m still me. I’m still strong, courageous, beautiful, caring, positive, full of life! Someone will see this, and I will have my happy ending.  I’m sure of it, though scared.

To you my dear readers. Love, life, and laugh. Be happy, and positive. Make everyday a new day!