Super Exciting News!

I have been waiting to share this news for a loooong time. Now that I am doing well (migraine free for 9 weeks!) and I am eating healthier, I want to move forward in another aspect of my life.

I graduated with a Bachelor of Art back in 2009 and I never got to use it. Over the years, while I was in and out of hospitals and doctors' offices, I've done research about possible careers. It was always my intention to one day get off social security disability and reenter the workforce. However, I never figured out what I wanted to do. Then, on my 30th birthday, I went out to lunch with my best friend. Somehow, we got on the topic of careers, and she told me about all the different things she wished she could do. I thought for a minute and responded that there were only two things I ever really wanted to do. One was to be a stage manager, which was my concentration when I got my Bachelor degree. But stage management is a difficult and demanding career - it is mostly freelance and you can't take sick days. I would have no benefits and I would never be able to call out. With my medical issues it wasn't a realistic career option. 

The other thing I wanted to do was something in the social work/therapist field. I have always been the one friends and family came to for advice. I've discovered I'm good at listening and helping people with problems. That day, after lunch, I went home and decided to do some research. I discovered that I could get a Master of Social Work in two years. And I thought, "Why not try?". I contacted my caseworker at the Department of Vocational Rehabilitation (DVR) to see if they would help me and I looked into schools. I chose two schools to apply to: Stockton University (where I got my Bachelor degree) and the University of Southern California (USC), which has an amazing online school of social work.

I have already applied to USC and I am waiting to hear if I've been accepted. It would be a dream come true to attend, because their school of social work is one of the top ones in the country.  I will be applying to Stockton University next month. I am also applying for every grant and scholarship I can find, to help defray the cost of grad school. I am waiting for the official word from DVR but my caseworker is fairly certain they will be aiding me in this endeavor.

In the mean time, I have been volunteering at a school for disabled children, because, as a social worker, I want to work with children with disabilities. It has been an amazing experience so far, and very rewarding. 

I am very excited about my future for the first time in a long time and I am excited to share it with all of you.  I will keep you all updated!

PS - I have hit 30 lbs on my weight loss journey and I have an appointment with a bariatric surgeon on Friday!

Biofeedback (or Stressing Out On Purpose)

I just recently started biofeedback as another method of controlling my headaches and migraines, as well as my stress and anxiety. There is a great deal of research backing biofeedback as an effective tool to control migraines (more information can be found here and here).

At my first appointment, the doctor and I went over just went over my history. At my second appointment, I was hooked up to the machines. The point of this appointment was to stress me out and see how I reacted. The machines would monitor the way my muscles tense in my back, the temperature of my fingertips, and my skin conductivity. Then the doctor alternated stressing me out and allowing me to relax. I don't want to go into detail about the stressors because if one of you decide to try biofeedback, you shouldn't know what they are ahead of time. What I will say is that there were three types of stressors: mental, emotional, and anticipation. Afterward, the doctor and I went over the results. According to the data, I didn't tense much and my temperature remained relatively steady, but my skin conductivity showed my stress. As for the tests, I remained calm during the metal and anticipation stress tests, but reacted quite a bit during the emotional test. It should be noted that I didn't react to the anticipation test because I figured out what it was half way through. 

Also, during the relaxation break after the mental test, my stress went up. The doctor asked what I had been thinking of, and I remembered that I had been wondering what the next test would be. So while I didn't react to the anticipation test since I had figured it out, I did have stress when anticipating the upcoming tests. 

I am looking forward to seeing how biofeedback works for me. I will keep you all updated!

Negativity vs Positivity (Guest Post!)

This is a guest post written by my wonderful older sister. I hope you all enjoy it!

Negativity Becomes Positivity

A happy, positive life.  That’s what we all want, right?  

I see so many posts on Facebook and hear conversations in real life focusing on the negative.  Even though I am about to mention the “negative” I promise you there is positivity in the end.

You see, much of my adolescent life I felt that my family and I had been handed a very rough deal in life.  With me going through rheumatoid arthritis, my brother being born with cerebral palsy and my sister discovering she has Chiari Malformation, sometimes it was difficult to find the so-called silver lining.  I started to wonder how much one family can endure and then my mom got into a car accident that has pretty much confined her to a wheelchair. 

Yes, my family has been going through (and continues to go through) a lot.  I know my dad has tried so hard to be the strong one in our family so that we could cry and complain about our problems freely.  Sometimes I wonder how much pain my dad is hiding.  I know my mom continues to think of others before herself when she really needs to focus on getting better (or the most pain free she can be) and have a “normal” life.  I have seen my sarcastic, smart-ass sister go from not caring what anyone else thinks to wondering if she will ever have a normal life because of her debilitating migraines.  My family and friends often ask how my brother is.  I usually laugh and say that he is the most carefree out of all of us.  He gives us an attitude like a normal brother and is happiest surrounded by friends at his adult program.  More noticeable than that, I believe he is often the happiest in our family and feels he has a “normal” life.  This is all he has ever known and he not only makes the best of it, he embraces it.   

I am inspired by him and the rest of my family.  I have become more positive because of them.  As a matter of fact, you will hardly ever see negative posts on my Facebook or even talk about negativity in real life.  Sure, I feel it sometimes and even voice it to only those closest to me.  But there is so much negativity in the world that I don’t want to add to it.  Why would anyone want to ever contribute to pulling others down with them?  But it happens.  You will always hear there are others worse off than you but have you ever stopped and thought those that are worse off may have more positivity in their lives than you imagined?

Here’s the positivity I promised:

• My dad has created a relationship with my brother that probably would not have happened if he didn’t have cerebral palsy.  Yes, my dad would have had a great relationship with him no matter what.   But because of his disability, my dad spends so much time with him that their relationship is unlike anything I have ever seen.  

• My mom has been a strong-willed, beautiful person all of my life.  She advocated for my brother, my sister and I as we went through our disabilities and never took no for an answer.  I believe this has helped her in her life now.  Ever since the accident I have definitely seen her spirit in a dark place but never lost.  She always keeps going because this is her new “normal”.  I know she will continue to do things for others before herself but now it’s our turn to do what she did for us.  Her positivity during our hardships has inspired us to do the same.

• My sister and what she has gone through (and continues to go through) has affected me so much.  She is my best friend and she is the practical one that everyone goes to advice for.  I feel sometimes her giving, beautiful spirit has been taken advantage of, yet she continues to give.  Her migraines then began to bring her down but again, she still cared for others even if she was hurting.  I believe this has worked to her advantage though.  Now, she is taking control of her new “normal” life.  We no longer ask how her head is feeling because that is not who she is.  She will let us know if she needs to.  She is taking back her health in the way she can – by eating healthier and getting stronger.  She is focusing on finding a career and volunteering for those with special needs because she wants to help others the way she and our family have been helped.  I don’t think any of that would have been happening if it weren’t for her disabilities.  I believe it is her turn to focus on her and those that have tried to take advantage of her or bring negativity into her life will melt away behind her.  She is going to make a positive difference in the world.

• My brother, as you read above, is an amazing person who will continue to light up any roomful of people that is lucky enough to have him.

• And me?  In the past few years, I have become the most positive I have ever felt in my whole life because of my family.  How can I think negatively when there is so much good that comes from them?

So next time you are thinking of all those negative things, remember all the positive things.  That’s all anyone is going to remember anyway so why spend so much of the time you have on earth thinking of the negative that no one else will even remember?

As for that happy, positive life?  You are the only one who can make it happen…my family is living proof.

The First 20 Pounds

Pounds have more good news to share guys - I've lost a little over 20lbs and I'm super close to my first goal (losing 10% of my body weight)!

I found a great article online on the health benefits of losing weight and I thought I'd share the benefits I'm experiencing (you can read the original article here). 

0 lbs - even without weight loss, if you're active, you will benefit! To quote the above linked article, "A study published in an American Heart Association journal found that getting physically active - even without losing weight - is associated with a longer life span". 

2 lbs - your blood pressure drops! In fact, it drops 1 mmHg for every 2.2 lbs you lose.

10 lbs - you might live longer! A study published in the American Journal of Epidemiology showed that people who lost 10 lbs reduced their risk of dying from hear disease by up to 30%. And a different study, published in the Journal of Clinical Oncology, showed that losing 10 lbs (or 5% of your body weight if under 200 lbs), can reduce your risk of developing the most common types of breast cancer by up to 50%. 

14 lbs - say goodbye to diabetes! The Diabetes Prevention Program's research found that after people lost around 14 lbs, Those at risk for Type 2 diabetes reduced their chance of developing it by 58%.

18 lbs - your heart is healthier! According to a study by the Journal of the American College of Cardiology, mildly obese people with Hypertension who lost around 18 lbs had reductions in their heart-wall thickness (which is caused by strain on the heart and can lead to heart failure).

20 lbs - you can breathe better! Researchers in Ottawa studied obese women and found that a 10% loss in body weight improves lung capacity by 5%.

It's one thing to lose the weight (which is hard enough!) and quite another to maintain it. According to this article, "'We don't know exactly why, but when you lose weight, the various hormones that control your hunger and desire to eat seem to kick in more, encouraging you back to your own set point.' In other words, Dr. March says, if you want to maintain your new weight of, say, 140 pounds, you will probably need to eat fewer calories than somebody who is already 140 poinds and just wants to maintain her weight."

In case you didn't get that - if I lost 10 lbs and now weighed 140 lbs (I wish!) and I wanted to maintain that weight, and I had a friend who has always weighed 140 lbs (she has not had to lose weight to get to her current weight) and wants to maintain as well, I would probably have to eat less calories than her. Completely unfair, right? Unfortunately, studies are showing this to be true. People who is have lost weight and want to maintain need to eat less than people who just want to maintain at their current weight. So, it's still a long and tough road ahead, both losing and maintaining. But I'm determined and I will succeed!

The (literal) Dark Side of Intracranial Hypertension

Today I'm going to talk about a part of my journey that haven't touched on very much - Intracranial Hypertension (IH).

PC, or Pseudotumor Cerebrii, is another, older, name for Intracranial Hypertension

I am lucky in that I don't have a shunt to control my IH (for info on IH and how a shunt can help, click here). I've heard stories of the multiple surgeries often being needed due to shunts clogging or breaking and I'm glad I've avoided that. I seem to be able to keep my IH mostly under control through the use of diuretics (see previous link for more info). And for a long time, I dismissed IH from my mind as just another diagnosis, one to keep in the back of my mind but not one ghat I needed to be concerned about. It turns out, I was wrong. 

You see, I am quite a bit overweight, and I have been for quite some time. And the more you weigh, the more cerebrospinal fluid you produce. For people with IH, that means there is more fluid putting pressure on their brain and their eyes. Since my IH seemed to be under control (I didn't need a shunt, nor did I need frequent lumbar punctures to relieve pressure), I didn't worry about my weight. I continued to eat what I wanted and I continued to gain weight. This continued until a few months ago, when I was in the hospital for migraines (again), just before my 30th birthday. 

It had been mentioned before by one of the other doctors at my neurologist's practice that perhaps my IH was what is kept landing me in the hospital, because I wasn't responding well to the medications that typically help migraine patients. That same doctor entered my room this time, to see me eating a meal my mom had brought me, upon my request, from the Cheesecake Factory. He also spotted candy on my bedside table. After speaking with me, he found my mom in he hallway and informed her, quite brusquely, that if I maintained my weight or, worse, gained more, I ran a high risk of going blind from my IH. 

That day, the candy in my room was removed and the leftovers from my meal were tossed. I was terrified and immediately began trying to eat healthier. I failed, because I had no idea what I was doing or what exactly eating healthier entailed. 

But just about a month ago, a new weight management clinic opened near me. I have consulted the doctor there and begun a weight loss program called New Direction; so far, I've lost over 18 lbs. I have also been given the information for two bariatic surgeons to discuss the possibility of having the sleeve surgery done. I haven't met with them yet, but I intend to. Because I want this to be a long term success. I've lost weight before, only to gain it all back and then some. I don't want that to happen again. And if surgery is what I need to prevent that, then that's what I'll do. 

So I'll be sharing my journey with you guys. Most, if not all, of my posts, will have a small update on my weight loss journey, and I'll have individual posts on bigger news, like meeting the surgeons. 

And in case anyone is wondering, yes, I've also been exercising. And, surprisingly, I enjoy it! 

As I mentioned in my (Good) News! post, I'm moving on to bigger and better things. This is one of them and I'm excited to share this with you!

Mental Illness Monsters

I stumbled across a post on The Mighty called "Artist Who Lives With Anxiety Reimagines Mental Illnesss As Monsters" (which you can read here). I loved the article and I thought I'd share my two monsters here.

(Good) News!

I have some news guys. Don't worry though, it's all good! I've been doing really well lately. I've had three days this month where my head pain reached above a 4 on the pain scale (on a 1-10 scale), which was early this month. Since then, it has been 21 days straight of my head pain being at a 1 to 2. I haven't felt this good in years! So I think it's time for me to stop dwelling on the pain and start living my life. 

I will still be writing this blog, and I will still be writing about chronic illness. But I will also be writing about my new adventures as I attempt to move forward. I have some exciting things in the works and I can't wait to share them with you. I will also be cutting down on the frequency of my posts, from twice a week (every Wednesday and Sunday), to once a week (every Sunday). Unless, of course, something major happens, in which case I will post as soon as possible. 

I look forward to sharing my journey with you!