Day After—We Survived!

 

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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! ūüôā ¬†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. ūüôā 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! ūüôā

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!

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Holidays..and the stress it brings

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So… it’s Christmas Eve…FINALLY!!!! I spent Sunday making Sugar cookies with my son. I was exhausted by the time we were done, but to see the smile on his face was well worth it! I sat in my walker and wheeled myself around the kitchen. We even made homemade frosting! Now..I’m not a great baker..I rarely bake..but these turned out pretty well!!! Though, I didn’t say they’re pretty..lol.

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The stress of Christmas shopping, wrapping the presents, dealing with family and then the cooking.. So much goes into it. Which in turn makes me feel worse health wise. Though I wouldn’t trade it for anything. Seeing the smile on my son’s face is all worth it.¬†¬†I’m falling a lot more, dizziness is worse. Had a really bad fall last night, I’m trying to recover from.

I’m trying to teach my son that Christmas is not all about presents, that it’s about family, faith, love. I remember as a kid, my dad got laid off from work just before Christmas. We lived in West Virginia, so it was wintertime. Imagine, December in the mountains. We had a choice, presents or food and firewood. My parents chose to put food on the table and keep us warm. On Christmas morning a knock came on the door, it was our neighbors, members from our church. They had a ham, casseroles, bags of presents, firewood. To me, that was still to this day the best Christmas I’ve ever had. It was the embodiment of what Christmas is. Family, Community coming together and celebrating our Faith, our love for one another, helping each other. ¬†If we did more things like that just for one person, it could mean the world to them. It makes a difference. The world needs more of that, in my opinion. More Faith, more compassion, more love.¬†

Yes I have something incurable, yes it’s taken so much from me, but it hasn’t taken my faith, or my strength, or my love, or my hope. These are all things that we should hold on to. Even if I do have a brain tumor, I’ll still fight. Because fighting is worth it, I have so much to live for. ¬†People often assume acceptance means giving up, to me it’s not the same. I’ve accepted this life, but in no way have I given up. My eyesight deteriorates, my hearing is going, my legs barely function, but I still fight. I’ve accepted this is my path, but I’ll fight like hell to live. I can still live while being in a wheelchair. I can be a mom, a wife, a daughter while in a wheelchair. ¬†Acceptance is not about giving up, it’s about letting go of the anger of why me, why this, and accepting life as it now is, and embracing it, and using your strengths in a positive way. ¬†We have to accept that our family will never fully understand what we go through, that no one will except those that suffer the same illness. Accept that they will never understand, let go of the anger, of the guilt, and be at peace. All you can do is express yourself to them, and educate them. My family doesn’t understand, but not understanding, doesn’t mean they can’t be supportive!!!

Christmas is about family, Faith, love. Take a moment this Christmas to let your family know how much their love and support have meant to you. For me, it’s meant the world.

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And the Results are in..Kinda

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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! ūüôā ¬†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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You found what, where?

 

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I was scheduled for an MRI and an appointment with an Electrophysiologist at Johns Hopkins on November 25.  This C-Spine MRI was important. They were checking for spinal lesions for MS. I arrived in Washington DC, Sunday night after a 2 hour delay due to a mechanical problem with my plane leaving Chicago. I was exhausted by the time I got in, as my flight was at 8am that morning. I had trouble in security at FLL, there were no female TSA officers on the floor to do a pat down, as I have a pacemaker and unable to go through metal detectors, so I waited, sitting on the floor for 20 minutes. I thought this was unacceptable.

¬†Once I got to DC, I was so tired I fell asleep pretty much as soon as I got to my hotel. The next morning, I was surprised with a trip through the capitol on the way to Baltimore to see the monuments. ūüôā Once arriving at Johns Hopkins we were prepared for the long day ahead. First was my MRI. Then my appt with my EP. Everything went well during the MRI. So I was off to see my electrophysiologist. He was apparently on vacation, but made arrangements to come in and see me. We went over everything. I show signs of pots, and NCS, but at intermittent times. I still have Inappropriate Sinus Tachycardia. We agreed to continue monitoring everything. If I worsen, then we will seek medication or if necessary another surgery. ¬†We also discussed the possibility of MS, and other possibilities that could be causing my symptoms. He wanted to meet with a Rheumatologist to get their thoughts on it. And possibly schedule a phone consult. ¬†I’m excited I have him in my corner! ¬†Before I left the hospital I was able to get a copy of my MRI disc, and request my report be emailed to me.¬†

The next morning the MRI report was in my inbox. I read it and cried. ¬†There is Disc Dessication from C3-C7, there is also a hemangioma on my C4. ¬†Degenerative Disc Disease and a benign tumor..not what I was expecting..AT ALL!!! But you know what??!! It’s ok. I’m strong enough.I have been in horrible pain for months in regards to my neck and back. Since I got back from Johns Hopkins the day before Thanksgiving, I’ve been basically bedridden. So, today I went to see and orthopedist that specializes in neck, and spine. And again, another shock. ¬†Today I learned I have Scoliosis, and A deformity of my femur in my hip socket, also there is a lesion on my left hip bone. He ordered CT Scans immediately. ¬†He seemed upset to learn that I’ve had x-rays recently by my other doctor and nothing was said or done. I’m still trying to remain positive. ¬†It’s all I can do. I refuse to let the darkness or whatever this disease is wins. I’m scheduled for CT scans Friday, and to see him immediately afterwards. ¬†My questions is this, how was any of this missed?? Or wasn’t it??? ¬†My family is trying to be supportive, but my dad is becoming increasingly frustrated and unpleasant. SO i’ve decided to stop telling him about any of it. If the scoliosis is as severe as my ortho fears, i’ll need surgery to help me, also surgery to help fix my hip. ¬†My dad informed me tonight that he has a curved spine, and that my uncle has scoliosis. He blames it on the way I walk. There is no way walking this way for barely a year could cause damage that way my back is now. The doctor said it’d take years. ¬†

So now we wait to find out how severe the curve is, what the lesion is, and we have to check bone density as well. One thing I do know. My friends, and family have been incredibly supportive. They’ve shown me such love and support throughout this past year and I’m so grateful.

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