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.

cherish-every-moment-of

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

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..

words

 

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!!

I-am-stronger-than-you-ever-thought-Id-be

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

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!

Home Made Bread
Home Made Bread

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!!

Mathew and His Rocket
Mathew and His Rocket

 

Mathew and Grandpa
Mathew and Grandpa

 

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!!

Me and Lillie Belle
Me and Lillie Belle

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!!

My Meals!
My Meals!

 

 

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

Well Done My Friend!
Well Done My Friend!

 

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!

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Holidays..and the stress it brings

keep-calm-it-s-christmas-eve-9

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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