“Creating the Cure for Dystonia Awareness”

I’m going to take a minute to boast about the lovely Lori Raines. This strong and hard working woman has worked so hard for the last several months to launch Neuronauts Now – a non-profit organization that helps to boost awareness and advocacy for the Dystonia community! 

http://www.neuronautsnow.org

This website has so much helpful information on Dystonia and those who suffer from it. I cannot begin to explain how excited I am about this launch. Lori and the rest of the Neuronaut community have been there for me and Saydi since the beginning of our Dystonia journey. Not only did their generous support help to boost my spirits, but their tips and personal stories also helped me to understand this neuromuscular disorder even more than Saydi’s doctors have. They have encouraged me to continue fighting for proper treatment for Saydi – they also helped me to understand how Saydi must be feeling. With her being so young and not knowing life without Dystonia, it is hard for her to describe what she is going through. Communicating with these inspirational people, I have a better understanding of what her body is doing as well as how to handle the many stressful situations that Dystonia causes. I will carry this knowledge as time goes on – This is Saydi’s reality. I am determined to raise her to be strong and accepting of others, even though she was never given the chance to understand life from a different point of view. 

Friends, please take the time to explore this website. Share it far and wide, make donations to keep this dream alive if you can! Awareness and advocacy are two extremely beneficial components for those suffering with Dystonia. Without knowledge, the desperately needed understanding, proper treatment, and compassion are hard to come by. 

Long Time, No See

Hello my friends. Again, it’s been a long time since I last posted – since then, I found out that on top of degenerative disc disease, I also have sciatica and arthritis in my back. My primary doc didn’t want to do anything as far as pain management until I saw a specialist – that appointment was supposed to be in May, but thanks to a mistake from Medicaid, we were dropped from our insurance. That forced me to not only reschedule my appointment, but I also had to reschedule Saydi’s last neuro appointment and she was, unfortunately, dropped from her therapy group.

That has been a headache for quite some time, but luckily it’s back up and running now. We still have to wait until August for our appointments, but it’s better than not having an appointment at all. I still have to get her back into therapy, but for now I’m taking baby steps.

Saydi was fortunate enough to get an appointment with a movement disorder specialist in Albuquerque! We’ll be heading up that way at the end of next week. While I have no idea what to expect from this appointment,  I truly hope this specialist has some answers for us. Her Dystonia is still as present as it ever was… if not more. Her heart rate has been abnormally fast and she constantly stops breathing, but lately she’s been better at communicating with me about what she feels.  Her legs are constantly twisting and her back contracts and spasms so far back that I’m afraid it’ll break. Even though there’s nothing substantial that I can do to help her at the moment, it helps that she knows I’m here for her… This appointment is the only hope I have right now. I have NO IDEA what else to do! Her medication (Sinemet) helps sometimes, but it mostly just makes her sleep now….I’m still unsure if that’s a side-effect of Sinemet or just the outcome of her muscles being so relentless.

Aside from all of that, my brother and I traveled to El Paso to go before a judge on June 12th to discuss the future of our mom’s disability case with Social Security. We found that they were missing vital pieces of medical records… The judge granted us 30 days to obtain those records and send them to him before her case is closed. Digging up these medical record worms has been making me quite the emotional mess lately. These records make me remember what the last few years have been like with my mother’s alcohol abuse and her deteriorating physical and mental health. They have also been helping me to remember the mama I grew up with. Random childhood memories, things she used to say, things she WOULD say if she were here. I wish I could take this time to properly grieve, but I feel that if I didn’t finish what she was trying to work so hard on, her energy spent would have been for nothing. I owe this to her, at least.

I have been in constant pain and my brain has been full to bursting with things I still need to do, but I feel like things are finally falling into place. School has been a hassle but I’m still working away at it. I’m really hating year-round online universities at the moment, but I know it’ll be worth it in the end.

I’m helping to prepare for some SERIOUS Dystonia advocacy/support soon. Please keep an eye on my Facebook, Twitter, and Pinterest for more information!

Twitter – @RebeccaElaine23

Facebook – https://www.facebook.com/r3b3cc4.3l41n3

Pinterest – http://www.pinterest.com/rebeccaelaine23/

 

Life Goes On

Image

It’s been a while, friends. A lot has happened since I last posted! Ryan and I got married on March 10th. We had an amazing couple of days out of town, which I think we both needed. Luckily, my sister in law was able to watch Saydi, so I am so thankful for that. Saydi was sick for our wedding, so that made it a little difficult leaving 😦 

I was also so thankful for the family and friends that were able to join us on such a momentous day. It means a lot to have so many amazing people in our lives, supporting our marriage and our family. 

I turned 23 on the March 20th. My closest friends were able to make it to celebrate and that night was too fun! 

Not much has changed with Saydi’s dystonia, but she’s been awfully moody lately. She is back to her energetic and stubborn, super long days but then spends a day or two just inescapably exhausted. That is pretty hard to keep up with.

I decided to see a doc about my chronic back pain, resulting from a car accident in 2009. After an MRI, my doctor told me I have Degenerative Disk Disease (DDD) and referred me to a specialist. Unfortunately, that specialist can’t see me until May (a feeling I know too well from getting Saydi help). The pain meds my doc prescribed aren’t helping much, but it’s better than what it was.

School is back in full-swing and I’ve also been working on completing my mom’s disability case through Social Security. I’ve felt pretty tired the last few weeks. I hope things start to look up once I figure out what to do about my back.  

Progress = Hope

ImageHello my friends. It’s been a while since I last posted – I’m sorry for that. Life has been a little crazy lately. 

Valentine’s Day turned out to be a great day. Sure, we had to be at an appointment at 8:45 in EL PASO (about an hour away) that morning, but I made it there with a few minutes to spare. I really don’t know what I was expecting out of this appointment. The last few times we saw her Neurologist, the most that happen was a dosage change. While the Sinemet has been working wonders, Saydi still has new symptoms associated with her Dystonia. She now walks on the tops of her toes from her feet curling under more often than not and her eyes cross or go opposite directions when she’s tired sometimes. The only reason we increased her dosage this time was to see if her new symptoms can be controlled like her previously existing ones. I am feeling pretty hopeful with this. She has been on the new dosage for a few days now and it seems to be helping so far. Her Neuro is also pushing for genetics testing, even though the geneticist wasn’t interested enough. Specifically, he wants to test for Dopa-Responsive Dystonia. 

Ryan got off early that day and we spent the whole day laughing together. It was really a great day and I really need that. 

Wedding plans are coming along nicely. I am ready to send off save-the-dates, even though I meant to last month. We have arrangements for our reception made and it feels like it’s finally coming together! 

Saydi has been doing so well in speech therapy lately. She has been using “ch” to end a word (like “couch”) more and more now. She has been getting lazy with “k” but is actually filling a sound for “s” which is usually a “th”, but this is new and good for her. OT and PT have been hit or miss, though. I think her body is just over-stimulated and tired due to her new Dystonia symptoms.

She has been waking up with pain in her legs and feet a lot the past few days. It just breaks my heart because even with all of the massages, warm baths, epsom salt, and essential oils, it’s still not enough. Her Neuro says to use Children’s Tylenol, but anyone who knows Dystonia knows that this is a joke. 

On a happier note, I saw my dad today. He and Carmen are in town for a night, so I decided to invite them to dinner. It really was great to see them and I hope to see them again tomorrow before they go home. 

I have to finish an assignment for school that was due yesterday, but I seem to be having trouble with my mom’s old computer. I decided to use that one for school, but something is seriously wrong with it. I am having a hard time getting it to open Microsoft Office (which is essential for my assignments) as well as my school textbooks which are a pdf. I hope to get this assignment done tomorrow, as long as I can plan my day around potential computer troubles.

That’s pretty much all that’s new… Saydi is asleep, safe and sound. I love to see her in such a state of peace. I’ll say goodnight for now – Netflix is calling my name. ❤ 

 

9:53

ImageMy mother passed away at 9:53 pm on January 16th, 2014. I planned to write a memorial post for her, but for once in my life, I am at a complete loss for words.

What can I possibly say to bring myself out of this numbed daze, this auto-pilot feeling? I find myself wanting to call her or text her, to tell her about the most mundane things like what I ate for dinner. It seems that with everything I still have to do to close out her accounts and situate her retirement funds, continue her disability case, I SHOULD be feeling anxiety or stress… I feel neither. I am certainly not unfeeling.. I feel pure joy and happiness with my fiance, overwhelming pride in my daughter. Love and appreciation for my family and friends and everyone else who has expressed beautiful words of condolences, support, and prayers for me and my family. Excitement for our wedding on March 10th, celebrating also 5 years of happiness and love with Ryan.

Now, more than ever, I feel relief. Copious amounts of relief that help me get up every morning. I am relieved that my mama is no longer suffering, no longer confused. I am relieved that my brother and I do not have to witness further cruelties of dementia, depression, and liver disease. I feel relief that she has finally found happiness and peace in the arms of The Lord and our papa, her daddy. She may also be with Kathie and Violet. I know she is not alone and I know she is no longer struggling and for that, I am eternally grateful.

On to what we have been up to lately: We got our marriage license yesterday! That was a very nice feeling of “this is definitely happening!”

Saydi has been doing so, so much better with Sinemet. Her Dystonia rarely shows it’s ugly face these days and this is another thing that I am completely and utterly grateful for. She is growing like a weed and eating everything in sight. She is sleeping much better. We have had a hard time getting back into the swing of things with her therapy and our schedule due to scheduling conflicts (or puke) this past week, so we will try again next week.

I am due to start school up again next week, too. Luckily, I passed my last class with a B-… This is considering the fact that in the craziness of my mom being in the hospital and our long journey to Tucumcari, I still worked on homework. Turned my final in the day after she passed away.

I think my body is blocking out my grieving process or something… I can’t describe it other than saying it’s “auto-pilot” to make sure I get everything done that needs to be done. I keep expecting my grief to hit me like a train, but it hasn’t yet… I feel an overwhelming amount of emptiness and I miss her more than I’ve ever missed anything or anyone in my life, but some force is keeping me going. I have seen so many signs that my mother is here with me, but that will be content for another blog on another day, I’m afraid. I am not ready to type it all out yet.

One accomplishment I do know that she helped me achieve is singing at her memorial with my brother. I have never sung in front of anyone before, not even Ryan. It was such an emotional thing for me – The song was Hallelujah and it is the last song we listened to with her before we said our final goodbyes. The song I was listening to as I cried on my mama’s shoulder for the very last time.

A Letter to my Mama

A Mother's Love

A Mother’s Love

Mama,

It has been a while since I spoke to you last. I have heard your voice since then, but I am missing my mama. The mama who taught me right from wrong; the mama who taught me how to love with my heart instead of my head. The mama who taught me that knowledge and passion have no limits and that no matter what happens, family will always raise us up when we are down.

For the last week, I have been remembering your lesson of family. During this (what seems like) impossible circumstance, my first instinct was to surround myself with family no matter where they came from. Natalie, Trysh, and DJ came from Rio Rancho, Dawn, Lexi, and April came from Las Cruces. Aunt Sheryl came from Texas. Catherine got here tonight. Desi, Destiny, Alyssa, Uncle Corky, Aunt Laura, Heather, and Chris have been here every day, too. Sean and I are taking care of Gramma while we are waiting for the hospital to find you a comfortable and safe new home in Las Cruces.

I miss our lunch dates at Village Inn, clothes shopping for the hell of it, raiding bookshelves at Coas, going to Sonic for blended floats, or even just being lazy in our comfies, eating cake and watching TV. You always knew exactly how to make me feel better.

I am surrounded by family and have a huge amount of support from friends, but I feel so empty. There are still so many words of wisdom and comfort that I need to hear from you, especially now, and those words were stolen from us before they could be heard. I treasure every word that comes out of your mouth even now, even if they don’t make any sense; the fact that you still choose to share your words with me  means you still know I hold some significance. I don’t want to feel forgotten.

When they tell me you are still refusing to eat, it breaks my heart that I won’t hear you say you’d rather eat pie instead. At least I know that you are still as stubborn as you always have been.

Two weeks ago, I was looking at mother of the bride dresses. I couldn’t find one that you would love because I know how you hate dresses. I was planning for you to come to Las Cruces and help me find the perfect white dress to make me feel beautiful on my big day. I never once thought I would have no choice but to send you to Las Cruces to get you settled into a nursing home instead.

Every time I think about it, I have to suppress tears through a lump in my throat. All I want is for you to see me in my wedding dress, see Ryan and I devote our love to each other in front of God and everybody. Including you. It seems like such an impossible thing to not share that moment with my mama. I know you’re still in there somewhere, but I wish I could experience you fussing over me and gushing about how proud of me you are.

I wish I would have told you more how much I appreciate you. Everything that I know about being a mom, I learned from you. I fully intend to pass on to Saydi what I have learned from you – lessons that I hold very close, never to be taken away from me. I always wanted you to know that all of my triumphs as a mother couldn’t have been possible without you; all of the obstacles I have encountered in motherhood were made smaller when you were by my side, helping me come to terms with it all.

This situation is impossibly cruel. At this moment, it is so hard to see your face but not your spirit. You’re there, but you’re not you and that seems completely ridiculous.

Alcoholism, depression, and dementia stole something from me that I will never get back. Even after their damage has been done, they continue to rob me of things you never think about losing until they’re ripped away from you with no mercy and no way to go back and try again. I have already had to get to know a new you in the last few years and I am not sure how this time will go, but please know I will never give up on you. I will be there – even if it seems like you don’t see me standing right in front of you. I will never stop loving you and I will always carry your love for me and my brother everywhere I go. I will never forget our good times, our bad times, our happy times, or our sad times. Those are memories that I will always treasure. I will remember them all for the both of us.

I am praying every minute that you find peace… that you can escape from this suffering and confusion that have barged in, uninvited and hateful. We still have a long road ahead of us, Mama, but I will be there every step of the way – loving you and missing you at the same time.

Wishing you were here,

Bec

Anything Can Happen

ImageTragedy has struck our family so soon in 2014. My cousin Matt experienced something no one should – he returned home from a hard day’s work to find his wife and unborn baby girl had passed away very suddenly. The cause is not official yet, but a blood clot or aneurysm is suspected. 

I didn’t know Kathie for long, nor have I ever met her in person, but we spoke quite a bit through Facebook. I remember vividly when they found out baby Rinka was a girl… she messaged me, too excited to keep the gender a secret from EVERYBODY (since she had planned for a gender-reveal baby shower). She made me promise I wouldn’t tell anybody to keep it a surprise. Baby Violet. We would talk about motherhood, pregnancy, growing up and instilling important family values into our children’s lives. Our very last conversation was about how healthy Violet was and how excited about labor Kathie was – she went on and on about how her hospital was going to have a jacuzzi for her to relax in to help her through contractions. “I’m trying hard to keep her healthy” “She is big, but that’s normal 🙂 I feed her well lol” were the last things she ever said to me. She was 7 months pregnant. 

It is clear how much of a wonderful mother she would have been. She was such a loving wife and a true woman of God. Only God knows why such a beautiful woman and precious baby girl were taken to Heaven so soon – It is so important to appreciate those in your life today.

Friends, family, old friends…I love you. I love every single one of you and appreciate the many ways you have influenced my life. We take for granted what is right in front of us. 

Please, today, take a moment to say a prayer for my dear cousin Matt. I can’t even begin to imagine the loss and grief he is feeling, in an unfamiliar city with a brand new job – away from all of his family. Today, please take a moment to look into this fund raiser, set up by his grieving family. Every little bit can help Matt with finances and anything else he may need during this extremely difficult time. 

https://www.giveforward.com/fundraiser/rxq3/kathie-rinka-fund

The LORD is my shepherd; I shall not want. 
He maketh me to lie down in green pastures: he leadeth me beside the still waters. 
He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. 
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. 
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. 
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.