Tuesday, June 7, 2016
Saturday, April 16, 2016
Tuesday, July 7, 2015
Why hello there! :) I know, I know I’m that horrible blog owner that hasn’t updated in months. I kept putting off an entry on here, promising I would do it next week, well next week turned in months of not writing on here. Sorry!! I promise I’m alive and haven’t forgotten about you guys! I can’t even believe it’s been 3 solid months since I have written on here. The last post was definitely a hard one to write but the response has been so overwhelming and so very appreciated from not only families with someone that has Kabuki Syndrome but others that don’t and just read my blog for insight. Thank you to all those who reached out to me afterwards and allowed themselves to be just vulnerable as I was. Your courage, words, insight and most importantly your love all were sweet reminders that this is right where I need to be.:)
The question I have been asked over the month or so is when was I going do an update on my life on here. I really didn’t know if that was something worth reading for you all but the same questions get arising so I thought this would be a perfect opportunity to finally post on here. Questions that have been the most popular have been How’s life right now for me, How’s my Dog Aslyn, What does the future look like for Kabuki Unfiltered, How’s the weight loss journey and where I’m at now on that, Has taking off weight helped any with my knees, Do I still struggle with Anxiety and what I use currently to help through it, Am I doing more speaking engagements?
Life right now is pretty great. Staying busy with my job as the receptionist still for the church my Dad pastors at. Enjoying the warm weather and really for the first time in my life enjoying being able to be active and confident outside. My sweet puppy Aslyn continues to bring so much joy and help with my anxiety. Aslyn turned 1 at the end of May. She is full of energy and curiosity that makes you smile, well most of the time. ;) Samson my kitty is still annoyed with Aslyn’s presence as the day we brought her home and Aslyn doesn’t quite get that memo, lol. Maybe someday… ;) But not to worry Samson still gets all the love and attention that a kitty could possibly want. :)
My weight loss journey has continued on since I last wrote. I have lost a total of 83 pounds and now have hit the point where I’m learning the balance of maintaining my weight loss. I stopped doing Jenny Craig at 45 pounds and did the 35 pounds on my own of just watching my calorie intake and what I actually eat and keeping moving. Still trying to get used to and comfortable with my new body but slowly accepting the hard work that I have worked so hard to get. I am continually and honestly don’t think I will ever stop learning that true beauty comes from within and not from what I see when I look in the mirror. Accepting that food and my weight will probably be something I deal with all my life but it can be something positive just like it is right now. The most popular question I get asked when people approach me is “You must feel so much better and You must not struggle with your knees anymore” and that’s a tough on to answer back. Do I feel better absolutely I do, Do my knees feel better yes to extent, Are they still causing me trouble sadly yes. I still have to be careful when I do go out and do active things that I don’t overdo it, that just because my body is saying I can go doesn’t mean my knees are saying go. There is no cartilage left on my left and hardly any on my right, they are just worn out and I don’t blame them, I have been through a lot with them. Not gonna lie and say it’s not frustrating though because it is, here I am wanting to actually do these things that in the past before my weight held me back hugely but now that it’s gone I’m ready to do these things I have missed out on there is still something holding me back. But though it may be frustrating and confusing I am still able to look at the situation and be extremely proud at where I’m at, I mean that’s 83 pounds lifted off of me that I am no longer weighted down with and if that’s not something to celebrate I don’t know what is.:)
If there is one thing I am proud of for Kabuki Unfiltered is that I have kept my life pretty open for the most part. I have done it that way so that those who have questions would feel comfortable approaching with questions. Some questions I have mentioned on here, some more private but still was answered through email or phone. It has brought me so much joy more than you all could ever think or dream of to know and finally experience that I’m needed or wanted. That being said the question that has been raised a lot is “How is your anxiety today/Do you still struggle with your anxiety like you used to?”.The answer to that question is yes, it’s still something that is there every day and I have accepted that it’s just gonna be a part of my life. Are there days that I wish I could have a break from it or wonder why some people only struggle with anxiety for a season or from time to time and not every day, yes but you know there is so much worse things that could happen that I would have to deal with every day. . So things that have really helped me recently other than my medication when my anxiety is bad is prayer, reading, getting out and walking, I know this sounds dumb but little puzzle games on my phone actually helps calm me down lol, to even just putting in my earbuds and listening to music that speaks to my heart and that offer the words in the lyrics that I’m having a hard time finding to express. So days all I have to lean on is Jesus and the promise that He hasn’t given me more than I can handle and you know that’s enough for me so days. So I’m grateful each day for the opportunity I have to live another day and embrace it as best as I can with open arms and move forward.
As far as events where I am speaking, I just had the opportunity to talk with families that attended the West Coast Kabuki Syndrome Conference in Torrance, California. It was such a beautiful event put together by Rick and Jodie Esponda. What made this conference so special to myself was that both my parents along with my best friend Amanda where able to attend this year with me. This was my Dad and Amanda’s very first encounter meeting someone besides myself with Kabuki Syndrome. It was such an eye opener for them and we all walked away talking about how special it was. It was such an honor to be able share my heart and my journey with families that are on similar paths as I am. Every time I attend an event where I am able to share or post a blog entry it makes me even more passionate about spreading the word about Kabuki Syndrome. If there is just one person in the audience that didn’t know something it’s one less person to add to the list of those who didn’t know. That’s what keeps is me speaking, writing, advocating, etc… So as long as there are people asking, discovering and talking than Kabuki Unfiltered will be here until the day comes where people stop asking “What is Kabuki Syndrome”. Another question is people asked when I am speaking next, there are some opportunities that are still being worked out but I will keep you all in the loop. People have also asked where I would speak, I always say I am open to share my story anywhere Conferences, Retreats, Schools, Churches, really anywhere. If you have desire to set up something feel free to message me and we can see if we can brainstorm together.:)
As I’m preparing to wrap things up with this entry I can’t help but think about the two year anniversary that just past of getting that phone call with the official news that I indeed had Kabuki Syndrome. Some of you are follow me on social media and saw the post I posted on the anniversary date. I had no idea what kind of journey I would be entering in that day, nor did I ever dream I would be public about it. Kabuki Unfiltered was not even a thought in my mind that afternoon but would eventuallybe born 5 short months later. The little blog that wasn’t supposed to have more than 100 views now is past 17,000 and now heading to 18,000 views before its 2 years anniversary start date. Just blows my mind that a broken, lost, lonely girl that was really considering her existence on this earth before that phone call receiving the news that should have wiped her out completely. I mean a disease that right now has no cure and that would lead her to finding hope, happiness and acceptance that she had never experienced and was desperately longing for. That right there is a miracle of God Himself folks. God truly uses our weaknesses to show Himself. If anything because I walked through those very dark moments I have more of a heart for those that are lonely, hurting and are label outcast because I have been in their shoes and I have found what they are searching for, a place of belonging, we all want to belong. I am so happy to tell you that girl found her place and its right where she belongs.
Until Next Time-- Be Blessed!
If anyone has topics that they would like to see discussed on here email me I would love to hear your input. email@example.com
Thursday, April 2, 2015
Sunday, January 25, 2015
Let’s start 9 years ago when I got my very first job at Chuck E. Cheese. I worked the kid-check right when you first come in. I was in charge of stamping the numbers on everyone's hand and making sure all the numbers matched with the kids and their guardians before they left the building. I enjoyed filling in at the prize counter where the kids would turn in their tickets they won from the games they played. I also got dressed up as Chuckie (to those who don't know who Chuckie is; he is the mouse mascot) that appears at birthday parties and greets the kids when requested. After a couple months of working there and I was not moving up in positions like I wanted. I started feeling a little like they were using me to do the jobs that no one else liked to do. I didn't know how to speak up for myself so, I just did them.
One day after a frustrating day working, I got off 30 mins early and walked over to the Target that was in the same parking lot and filled out a application. I had no idea they would interview me right then and there! I did the interview in my Chuck E. Cheese uniform which the interviewer got a good chuckle! I was hired on the spot and started the following week.
I did really well with working at Target where I worked as a cashier. I had a hard time with the timer that would show how fast you could ring up the person checking out. I would come up over the time limit. I never hit the goal that was presented to me weekly. I would get overwhelmed if people were in a hurry, most people that came through my line where understanding. I loved when it was slower and I got to take back all the returns in the store because I always remembered and knew where the item belonged. I loved organizing the displays in the make-up isles. That was my favorite part of the store and still is today.
One day during my shift I was asked if I could ring up the orders in the little Starbucks chain in the store for 15 minutes while one of the workers took their break. I learned of a open position that they had for a Batista in the little cafe and that day I ended up transferring over from my job as a cashier and taking position. I was quite happy over there. I had simple tasks and it was never really too busy. I stayed there until I left for bible college in the fall.
When I came home from bible college I applied at another Starbucks right by our house. It was perfect walking distance and it was my first job that I had where I could take myself to work and not ask for rides since I don't drive. Working at this Starbucks was different experience than the one I worked at Target. This store was very fast paced. No matter what they had me doing I just couldn't keep up and I would get flustered. I was noticing my co-workers getting impatient when I wasn't understanding my training. The one thing I really enjoyed was organizing the shipments in the back. I loved refilling the cups,lids,etc...Although it was hard I stuck out my time there for a couple months until I left to go to Mexico for a couple months where I helped start a extension campus of the college I went to.
When I came home from Mexico I applied at another retail store. I really struggled with keeping up with everyone. I was taking too long ringing up people and I wasn't getting anyone to sign up for a in store credit card. For the first time in my working career I realized something was different between myself and my co-workers so I than slipped into my fantasy world that I had at home where I was just like my family and not dealing with reality and brought it into workplace. I really struggled and ended up leaving my job. I realize now that it probably would have been a different story and would probably still be with the company if I had an advocate for me and helping me. I didn't know I had Kabuki Syndrome and that it effected my day to day life.
Like I have said before in previous blog entries that church is one of the places that I never doubt that I wasn’t safe, that even though at times my anxiety takes over while I am there at church, I know that I am surrounded by those who truly love me and want to help me through whatever it is that I am struggle with. So the fact that I get to work in environment that in my case makes feel comfortable and safe is beyond fantastic. The staff I work with is so supportive through everything I do.
I was at the church office when I got the call confirming that I indeed had Kabuki Syndrome and they have seen the whole story unfold and still is unfolding today. I really couldn’t think of more supportive work staff to work with. The church has been really supportive working with me when I have harder weeks than others.
I landed the job as the church receptionist during the start of a 3 year journey to see if I did indeed have Kabuki. When the retail job wasn't working out with that job that I had so I started helping out with the church and eventually was hired by the church. Some of you have asked if I have had help with SSI and disability. We have been battling for disability for help for myself for the last 6 years have kept getting denied. We will continue to fight until we win the battle but as of right now I don’t have any help. So no haven’t been in extra classes to prep myself for the work force.
I have come a long way since when I first started working at the church. Some of areas that I really do well is greeting when someone comes in, I am one of the first faces that they see when they step into the office. Something I don’t realize but others do is that I am constantly smiling even when I get overwhelmed I’m always smiling. That’s part of the reason why people are so shocked to hear that I struggle with anxiety and depression almost daily because looking at me you wouldn’t never guess I did struggle with those issues.
I really like to clean the kitchen at home so I have taken on the duties of keeping the back kitchen/break room clean and tidy. I am really fast typer so I do really well transferring things into the computer. I remember names and people that come into the office really easily one of things that I can blame on my fabulous Kabuki memory works in my favor. My love for music even plays into a part of my position at the church. I get to have the opportunity to help pick out new worship songs and find musical guest to come play at the church. I am really comfortable with keeping the routine task the same. I get really easily overwhelmed when something is new or changed. Even if it’s the simplest thing that would make my job much easier; it’s really hard to make myself to relax and accept the new change. I may need the instructions repeated for the new project several more times than it would normally take to get the new task down. There have been many moments in tears just being overwhelmed. I can get really nervous talking on the phone and making phone calls. I am afraid that people on the other end of the line won’t understand me or that my anxiety will kick in and I have trouble getting my words out. I am so fortunate to have several ladies in the front office that are near. I can transfer the call to when I am having a hard time communicating. I always have issues with giving directions to places because I am not driving and I am not confident with the street names.
There are days that my anxiety is hitting me harder than other days. The office staff allows me to take a day off or the ability to go home earlier than planned. There is also times that one of my knees will go out and that will take me out of the office for at least a couple days. They understand on both accounts that it’s out of my control and have given me grace in that area.
All in all I really enjoy my job and the people I get to work with daily. That I also get to work with people that understand my condition, allow me the grace that is needed and love me for who I am.
Looking back at all my previous jobs it has shown me that if you want something go out and get it. Nothing is just handed to you; you have to go out there and earn it.
These job experiences have helped shape me for the job i have now. I have learned that I really do well in a position that allows me to go at my own pace. I'm thankful for all the lessons I learned along the way and am still learning.
To those of you who have young Kabuki Kids: I hope my story in the working field gives you encouragement and gives you hope that your child can grow and experience the rewarding effects of having a job and that it is possible for someone with Kabuki Syndrome to have a job and be successful and thriving in it.
"I can do ALL things through Christ who gives me strength." Philippians 4:13
Before i sign off i wanted to let you all know about the opportunity to get a Kabuki Unfiltered shirt. They will be available till February 24 do it your today.:)
Until Next Time-Be Blessed!