Tonight, I have decided to write about a topic that has been weighing heavily on me lately and that is how important it is to surround yourself with people that love and support you know matter what. Having chronic illnesses can be a lonely and dark world so having those people in your circle that care and hear you out no matter what is so important.

When I was first diagnosed with my first set of spinal issues almost 4 years today. Most people thought it was no big deal because I was born with a disability and I am just used to powering on. But I was so scared because deep down I knew this was just icing on the cake and I knew something greater and more powerful was going on. It was during this time that friends truly rallied around me and supported me.

As, I was diagnosed with more and more illnesses like food and environmental allergies those friends slowly dropped away. I believe this is because people were scared of the unknown and how to help. But the fact of the matter was I just wanted someone to listen. I didn’t want them to solve the problem. These illnesses are no one fault they just happen. It is in the darkest of times when most people just need a hug and some encouraging words.

Fast forward to March 2014, I was officially diagnosed with EDS type 3 with some vascular symptoms. At this point and time I felt so alone and depressed. But, at the time I was relieved because my medical mystery was finally solved and 15 years of searching for answers and just to be told it was in head was over. When I told the few remain people I felt close to of this new development some people just told me that they had never heard of it but were interested in learning more, some just stopped talking to me all together and some people just listened.

Support is one of those things you don’t realize is important until its gone. People support the people you love and care about. When you see someone that is struggling please reach out to them with a text, phone call or offer to come and visit although that is difficult for those of us with chronic illness to muster the energy to have visitors. That support means the world to us while helping us feel less isolated and connected to the world.

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What is normal really?

October 24, 2014

It has been over a year since I wrote in my blog and I have been encouraged by many friends and family to start blogging again and share my journey with others. I have been very reluctant to do so. Those of you who know me these last 4 years have been extremely transformative for me. I graduated college in May of 2011 and was thrown into a the “real” world which has been less then kind to me. I also have been diagnosed with 35 chronic illnesses and have been on the hunt to make my life as “normal” possible.

Normal is such an odd term to me because what is normal really? We all experience different things and different emotions which cause us to frame our world differently. Being diagnosed with all of these illnesses has really changed my world because when you are living in a body that can turn against you at any moment. You really cherish all moments no matter what the circumstances because you are always learning and growing from each experience. Which makes you more equipped to handle the next success or hurdle.

Before my personal medical Armageddon I was a workaholic that was always on the go looking for the next project and new trend. But in reality I was missing out on so much life because I was worried people would think less of me because of my disability so I in a way over-compensated based on what I thought society believed.

Now, that I am diagnosed I know my limits and I do what I can and I do my best not to beat myself up emotionally if things do not get done because in the end I am doing the best I can. I am learning the art of self-care. Sadly, most people do not know the importance of self-care. You cannot be your best if your burnt out and exhausted.

So, this is my challenge to you as the reader. Don’t worry about what is normal we all have a different normal because we all have different life experiences. Also, treat yourself and indulge in some self-care. I highly suggest binge watching something on Netflix. It will allow you to re-charge your batteries and refocus.

Please check back later to learn more about my journey! Until later!

With fall just around the corners its time to start thinking about how to update your wardrobe. But with all trends it is important to make sure they fit your body type well. Because we all know just because its a trend doesn’t mean you have to go out and rush a buy it. The important thing with any piece of clothing or accessory you purchase is that you feel great in and it inspires confidence within you whether or not it is a classic piece or a trend.

My first favorite fall trend that works well on most body types is classic and eye-catching outerwear. Like faux leather, furs, and peacoats. For all body types it is important to experiment with length, colors and fits. For example for a pear shape body type it is good to have a coat that is belted to draw attention to the smallest part of you. Also bright colors like this season’s emerald green is perfect because it looks good on all skin tones and matches well with patterns if you so choose to mix and match prints with solids.

The 2nd top of fall that fits most body types is to embrace classic prints like menswear fabrics or houndstooth. These classic prints are timeless and never go out of style. These pieces can also be considered investment pieces so it ok to splurge and get a luxury brand of an item in such a print because you can use it season after season. My favorite way to use this trend is a skirt or cardigan because these are pieces you can wear for almost any occasion such a business meeting or just a casual lunch with friends.

The third and final trend of all the fall that works for most body types is layering. Layering a great option for the fall because it not only keeps you warm during the crispy fall season but it also adds an element of style to your day because you can mix textures and patterns. For example, a great way to style this trend is to mix a lightweight dress over some leggings that are full of pattern or texture. This allows you to be comfortable yet fashionable.

All and all these are some of the great trends that are coming up this fall! Have fun experimenting with fun outerwear, items with classic prints and layering. 

 

 

Hey Everybody,

It has been a very long time since I wrote on my own blog and I have had a lot of life changes! The biggest one being my Graduation from Holy Names University. So I wanted to share some of my top 10 lessons from college now that I have some free time to write!

1. Work Hard but Play Harder

2.  Don’t be afraid to try new things

3. True Friends will always be there

4. Speak your mind

5.  life is complicated, you lose people you love , but you will always find other people, never let go of the past but leave enough room for the future.

6. Stand up for what you believe it

7.  “laugh often, smile much, love always” ( A personal life motto)

8,. Do what makes you happy. Be with who makes you smile. Laugh as much as you breathe. Love as long as you live! ♥

9.  Stress is not fun but the finish line of graduation is amazing!

10. Learn to say no! (Something I am still learning as I am a work aholic!)

Enjoy and Check back soon for more on my exciting post grad life! 🙂

Spatula signing off!

Busy Busy Week….

August 21, 2009

Been an insane week…. Monday and Tuesday was spent dealing with SSI issues. So far I have not been deined but I am waiting for an agent to call me back. The guy on the phone was so rude when I had trouble speaking and it make it so much worse. So, I again explained to him that I have a stutter and then he automatic assumed that I was retarded. Then he decided that my case was closed and he needed to call us back. I needed to go to HNU in the evening for our first ASHNU meeting so I was quite upset that we would have to wait around all day. So, I spent the day working on a new SEO campaign for my website and getting ready for fall semester. 2:30 came and went no phone call my mom called and left a message for the SSI guy and then it was off to HNU for the ASHNU dinner.

Had a great time at the ASHNU Dinner and cannot wait to start this semester and do some awesome stuff for the HNU Community especially the commuters. Got home and saw the message light and the SSI guy left a message that we needed to call him at 7 AM because he wanted to process my claim. I was like 7 am that so early. I also had an appointment 10 AM with my department of rehab counselor. So, 6:30 am my mom gets up and says time to get up for the SSI guy. I decided to sleep instead of get up because this time the guy just wanted to speak to my mom. 7:15 AM no call my mom leaves him a voice mail no answer… Ok it’s now 8:45 am still no call. Got to get up for my rehab meeting. My Mom call again and no answer. Got to hop in the car and go to meeting. The meeting went well with the department of rehab I am now in plan and will have some help finding a job once I finish my undergrad.  We get back from the meeting and running some errands and the message light is blinking big as life the SSI guy calls and says call me back… Not I am sorry I made you get up at the crack of dawn for nothing. So, I call him back and he ask for my mom… I promptly give the phone to my mom but keep it in conference call mode so I heard the whole thing… basically you cannot have any money or assets but the ironic thing is that they still expect you to pay bills and god forbid you actually save your money like I do because you get punished. The kicker of the whole interview was do you have any money is your pocket… I was like what so my mom asked him to repeat the question and he was asking how much cash I had on me! I had none because something prompted me to place my purse on the kitchen table. 2.5 hours later we are finally done with interview only to be told he can not process the claim because he is not an SSI agent that someone else will call us! STILL WAITING 😦

Wednesday: Was more meetings at HNU to discuss orientation and all that. Had a great meeting about transfer orientation which will be on Saturday… I will be doing double duty for orientation because I will be speaking as a transfer and a commuter student. So, on Saturday I will be on a panel answering questions about my transfer experience which for me was quite difficult because it was hard for me to leave my CPC friends…. By the way shoutout to them I hope your enjoying your last few days of summer I ❤ you guys! 🙂 and secondly it was such an adjustment for me it that it was very lonely because I was so used to having a large group of people around me. On Monday I will be speaking as a commuter and my position as the commuter student rep in ASHNU. I really am excited to introduce myself to and explain my goals for the year because the commuters are very under represented. Once the transfer meeting was over I had a meeting with my advisor to see when I could graduate looks like maybe Spring of 2011 or Fall of 2012. 😦 Guess it will take me a little longer because of transferring.

Finally done with meetings time to test out motorized chairs… Then its off to skype into the 2nd ASHNU meeting. Testing out chairs went well no crashes or accidents… I just got a demo chair that is sort of like mine… the horn is so dumb it is a low beep. The only thing that is scary is hills and inclines I still have quite a bit of fear from flipping my chair and break my arm in the 4th grade. I practiced today and gained enough courage to go down the driveway.

2nd ASHNU meeting went well but the skype quality sucks…. Finally got to go to dinner around 9 pm Wednesday night and this was too late because I had not eaten since breakfast around 9 am…. ugh such a long day!

Thursday… Was more phone calls with lawyers about setting up a trust for me and hanging out with my mom because she has to go to work tomorrow!

Gnite all! Project Runways on! *the golden spaula is channeling Tim Gunn and says make it work!*

Errands and Money Worries

August 14, 2009

Today has been an interesting day again… Was running errands with my Mom and was almost run over by people in Target and then got ugly looks when I said excuse me. On the brighter side of life I am getting used running errands and holding several items in my hands while pushing my chair with one hand. Also, I have found some creative ways to grab items off  high shelves because when you ask employees they seem like they are bothered to help people with disabilities.  I cannot wait to get my motorized chair because this will make errands so much easier because I will have a tray to place items and my wrist will not get strained because I will not have to propel myself for and stop on a dime because people run in my way.

Once Back from errands I decided to start pricing out cars and the conversions that I may need. I still have to do the DMV stuff and interview with a driver safety officer and then the most scary part is the behind the wheel test at DMV. The lessons alone are 250-750 an hour. I believe I need about 30-40 hours of training with an instructor that specialize in teaching people with Cerebral Palsy and this does not even include the skills evaulation that I have to do even before getting behind the wheel. So at 250 dollars X 30 hours that would be 7,500 dollars (That is the cheapest) that is so expensive. I have no idea how I will able to afford this and pay for college. Then once I pass the behind the wheel test I either have to rent or buy a car then pay for the conversions. I found cars as cheap as 20,000 and 50,000 but these cars only have some of the conversions I need. Conversions for hand controls are as little as 850 up to 2,000. Here’s a link to the hand controls I would probably get http://www.amsvans.com/Equipment/Hand-Controls-for-Handicap-Accessibility I also found these transfer seats that may or may not be helpful to me because I would just probably take the driver seat out and just use my power-chair as the seat. These transfer seats start at $1,995.00. Here’s a link to that as well http://www.amsvans.com/Equipment/Transfer-Seats-for-Wheelchair-Access

As for the car itself I found a few companies that do cars for the disabled but they are all out of state. I am hoping to get something different then typical van. I like this van http://www.amsvans.com/Wheelchair_Van/Access_Power_Ramp/Volkswagen/Routan/Minivan/544951.vehicle but it cost a shocking 44,582 and it still does not most of the conversions I would need. My dream car would be a red scion http://www.fminow.com/index.cfm?fuseaction=ViewInventory.default&Car_ClassID=1&Car_TypeID=1&Car_Make=Scion not sure how much those are.

So, needless to say I am a little down because it looks like I will not be driving anytime soon because it cost too much and in this current economic situation its just not practical to ask my parents for over 40,000 dollars to pay for lessons and a car. I think it time to start playing the lotto!

*Golden Spatula waving goodbye with a frown face*

Today was another busy day! Went out early in the morning with my Mom and some of her friends for breakfast… Came home and did some work on my portfolio redesign then it was time for Matt from Wheelchairs of Berkeley to come over to discuss what kind of motorized chair I will get. There are so many options that it was almost overwhelming but Matt was there to guide me every step of the way. It was decided that my chair would have many drive settings but only 3 main ones that will have many subsets. My concern is will the chair have a enough power to go up the hills at HNU. Luckily for me there is a drive setting that has a lot of torque to accommodate me. I will even have hydraulics to keep me from tipping and be able to ride 20 to 25 miles on one battery charge. I will hopefully be able to test drive a chair on Friday or Monday at the latest… I am really excited because this will allow me to be more independent and hopefully my left wrist will finally heal! Yay!

Most importantly the chair will relieve some pain in hips, knees and back because the chair will actually fit me much better. Because my current chair is over 8 years old and I have grown since then!

More later! Time for bed! *Golden Spaula waves goodbye* 😉

Hi All,

I have been thinking about blogging for a while… But a particular conversation with a friend today has insipired me to actually do so. For those of you who do not know me I am 20 years old and am a college student at Holy Names Univ in Oakland. I have Cerebral Palsy and use a wheelchair to get around.  I have always been considered a high functioning person with CP so I never really needed help in school and all that. But now that I am in my Junior year of college and have the support of some amazing people in my life I have decided to embark in a life of independence.

This has proved to be so challenging because everything is based on your involvement with the department of Rehabilitation but most importantly most everything is based on your approval for social security. I was denied recently for having over than 2,000 dollars in my name. I am sorry but that is such a odd reason to be denied because it is impossible to live on 2,000 dollars a year. Especially in CA I was looking at rents in the Oakland/ Berkeley Area and it was more than 2,200 a month and that is without the modifications like a grab bars in the bathroom and modifications to the kitchen. Also, I would need to hire a 24/7 care person as well to assist me. (If anyone knows of a good service that helps you find a care person please let me know) So, with all that is needed how does the government expect someone to live on 2,000 dollars a year.

I will be reapplying soon but on average most people are denied 3 or 4 times before they are accepted. I feel this is a little insane because its hard enough to be a person with CP and the extra stress of all this is not helping. I have been told by so many people that I am an over-achiever and all that. What is wrong with someone with a disability wanting the best out of life and wanting to make something of themselves.

More later!!! time for some dinner after a great day with friends! I miss you guys and thanks so much for making today so much fun!

Signing off for now! *Golden spatula waves bye* Andy that was for you! 😉 LOL!