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!

Things Not To Say To A Person With Migraines

My mom recently found an article on migraine.com called "18 Things Not To Say To A Person With Migraine". I found it to be very interesting and I thought I'd share a few of the things that really struck a chord with me.

I've had migraines that last for weeks and I've heard of people who've had migraines last even longer. This statement is just plain bullshit.

I can't remember the number of times a doctor has said this to either me or my mom (when talking about me). It disgusts me that medical professionals can be so quick to dismiss what they can't solve as "attention seeking" or depression.

UGH. No. No, I can't work through it. Just like you can't work through a broken leg, you can't work through a migraine. And if you say this to me, I will punch you.

Now, I don't mind if a close friend or family member says this. It's when near strangers, or worse, actual strangers, say it that I get kinda pissed. Because 99.9%of the time, yes, I've tried it. Believe me, I am constantly researching new migraine treatments and if you've heard of it, so have I. 

Those are the four that really stood out to me but the whole article is really good to read if there is someone in your life with migraines. Be sure to check it out!

21 Things (Part 2)

And now for the second half of the 21 Things!

11. Keeping up with your classmates or colleagues can leave you feeling exhausted. 

A few years ago, I was in school to become a sign language interpreter. Every time I had a migraine and missed class, I fell further behind. My anxiety skyrocketed and eventually, I had to withdrawal from the program. I simply couldn't keep up with my classmates and the demands of my professors. 

12. But a good support system can get you through almost anything. 

To quote a previous blog post, "I have friends and family backing me up. They're the reason I made it through my 20s with some sanity. They were the bright spots in my life when everything else seemed dull and grey. They never gave up on me, and for that, I'm eternally grateful. I don't know what I would do without them and I don't intend to find out".

13. Especially when it's your family. 

My family is extremely supportive of me. They never blame me when I'm in pain and can't do something and they do their best to accommodate me and make me comfortable. My mom tries to be there every day when I'm in the hospital and if she can't be there, my dad or my sister come instead. 

14. It's important to celebrate all of your victories, even if they seem small.

I celebrate all of my victories, big or small - getting my Bachelor's degree, restarting this blog, going a week without migraines...

15. It's easy to blame yourself, even though it's not your fault. 

As I mentioned in number 11, I had to drop out of school at one point due to my migraines. I felt like a failure for quite a while. It took a bit of time and a bit of perspective for me to make peace with it. 

16. Your normal may not make sense to others. 

My normal involves heavy duty drugs and uncomfortable procedures. My normal involves more doctors visits in a month than most people have in a year. My normal includes sleep and ice and meditation. My normal isn't your normal. 

17. You can try to hide an illness, but that doesn't mean it goes away. 

I fake it sometimes. I think everyone with chronic pain does. That doesn't mean my pain isn't that bad, it just means whatever else is going on is more important. Eventually, I'll pay the price for ignoring the pain, but it's usually worth it.

18. Keeping up with everyday tasks can be difficult.

Some days, I can't keep up with everyday tasks. Some days, I can only lie in bed. But those tasks will still be waiting for me and they'll be growing day by day until I'm well enough to try and tackle them again. So usually, even if I don't feel that great, I try to get some stuff done every day. 

19. No matter how strong you are, ignorant comments still hurt. 

I'm lucky, because I've encountered very few ignorant comments. But I have had professors doubt me when I ask for accommodations and people look at me funny when I use the elevator for one floor. Even though I'm stronger than I used to be, it still hurts. 

20. Illness can dash your dream of starting a family of your own. 

I'm not looking to start a family right now. But that doesn't mean I won't want one in the future. Unfortunately, a lot of my conditions are genetic. Do I get pregnant, and risk passing these things on to my child? It's a tough question, and one I don't have the answer to. 

21. But, despite all of the challenges, you still manage to come out a stronger, better person.

100% stronger, 100% better!

21 Things (Part 1)

Back in July, there was an article on Buzzfeed called "21 Thngs Only People Living With A Health Problem Know". I thought the article had some good points, so here are the first half of the 21 things listed, with commentary on how it applies to my situation (you can read the original article here).

1. When you're first diagnosed, there's a period of mourning. 

Each new dianosis does cause some mourning. Some caused more than others, but they all meant the same thing - my life is not going to be the one I pictured. It took a long time for me to be ok with that, and, some days, I still resent how different my life is from what I wanted. 

2. Accepting change is often the hardest part.

This rings especially true for me. I had an incredibly hard time coming to terms with the fact that I couldn't do what I used to be able to do anymore. I had to let go of my dreams of stage managing after college. I had to realize that each new treatment was only going to help, not cure. It's a hard pill to swallow (pun intended!). 

3. You never really get used to being sick.

For a while I thought I was getting used to things. Going to doctors, filling out forms, having procedures done; it all became routine. But somewhere inside, I was (and still am) angry and frustrated and not used to things at all. 

4. Not all disabilities are visible. 

If I could shout this from the rooftops, I would. Not a single one of my disabilities is a visible one. But that doesn't mean they aren't real. I've had professors who doubted me when I told them I needed accommodations and felt pressured to stand on crowded trains and buses just because I look healthy. 

5. Years of surgeries and treatments can change how you look at yourself. 

An mentioned in a previous post (which you can find here), I used to be ashamed of my scars. I would wear my hair longer than I liked, just to hide the biggest one on the back of my head. I have scars on my upper arms from PICC lines and scars on my stomach from getting my gallbladder removed. I used to hate all of them and I certainly looked at myself differently because of them. I still look at myself differently, but now it's a positive difference and not a negative one.

6. You often have to pick the lesser of two evils between side effects or treatment options.

One word - ketamine. Other, less extreme, examples of side effects I deal with due to my treatments and medications include sinus pain, anxiety, fatigue, nausea, stomach pain, and headache (yes, my headache medicine had a side effect of headaches), to name a few. 

7. A physical condition affects you mentally, as well as the other way around.

One time, in college, I attended an award ceremony held by the theatre department. There, everyone active in the department was given a silly award based on something memorable about them from the year. I was given the "hypochondriac" award because, apparently, I complained about being in pain too often. For several years after that, I hid my pain and struggled to pretend I was ok. This led to an increase in anxiety and depression, which led to an increase in pain. It was a vicious cycle. I eventually learned it was ok to admit when I was in pain, but only after my pain escalated to the point that I couldn't hide it anymore. 

8. You spend a lot of time waiting. 

Ugh, the waiting. Waiting for appointments. Waiting at appointments. Waiting for treatments. Waiting for pills to start working. Waiting for the pain to go away. Chronic illness = waiting. 

9. And a lot of time taking medications - sometimes for the side effects of your other medications. 

I currently take 7 pills every morning, 1 pill every afternoon, and 1 pill every evening. Also, I take a number of pills or injections as needed for pain, and then, I take pills for the side effects from those pills/injections.

10. Sex can be a real challenge. 

Yeah, so, my mom reads this blog. Hi mom! 

But seriously, I'm sure all of you can imagine the difficulties things like joint pain and headaches can bring to sex, not to mention anxiety/depression and medication side effects like nausea. 

Coming soon - 21 Things (Part 2)

Origins - Part Seven (or "The Time I Sneezed On My Doctor")

We've pretty much caught up to the present when it comes to the Origins series, which means this will be the last of those posts. As we covered in previous posts, I am currently going to Jefferson Headache Center and I'm on a combination of medications and Botox. However I still felt like there was more I could do to get my migraines and headaches under control. Luckily for me, my mom was on the case.

Unbeknownst to me, my mom had been researching treatments for chronic migraines and headaches. And she stumbled across one that might work for me - Sphenopaletine Ganglion blocks (or SPG blocks). An SPG block is basically introducing lidocaine to the Sphenopaletine Ganglion nerve, which resides in your naval cavity. SPG blocks have been around for a while but they used to be very painful (using a needle through the roof of your mouth) or inaccurate (using a long cotton swab to place the medicine up your nose). More recently, however, a new procedure has been introduced. It uses a catheter placed up the nose (with or without fluoroscope) to deliver the lidocaine directly to the nerve. Obviously, this tends to be more successful when done under fluoroscope. 

So when my mom told me about it, I was interested I trying it out. She found a company that specializes in the catheter used for the new procedure and asked them if there were any doctors in the area that I could see. The first one I went to see didn't go well. When I arrived, the nurse informed me I was supposed to bring any recent scans I've had done. When I informed her that I had none with me and no one told me about them, she insisted that I had to have known, because she makes all the calls and she always tells people to bring scans. Since the doctor wouldn't see me without scans, I left. I was very put off by the receptionist's attitude and didn't want to return to that practice. 

After that disappointment, my mom located a different doctor, quite a bit further away from us. This would be Dr. B, with Fox Chase Pain Management all the way out in Trevose, PA. Visiting him was much more pleasant. His receptionists and nurses were kind, and he was wonderful. He took the time to answer all of my questions and agreed to try an SPG block. He did warn me that SPG blocks are only known to help with pain in the forehead and behind the eyes. While I do have pain in other areas of my head, the worst is in my forehead and behind my eyes, so I thought it was a good idea to try anyway. 

Getting an SPG block done under fluoroscope and with a catheter isn't terribly painful, but nor is it terribly pleasant. I was able to eat a small breakfast and take my medicine the morning of because this procedure isn't done under anesthesia. When I arrived for the block at the surgical center, I signed a bunch of forms and then waited to be called. When I was called, I was asked to give a urine sample, and then change out of all my clothing except underwear and put on a gown. I then had the option of sitting or laying on a gurney in a curtained off cubicle. Eventually, a nurse came and wheeled my gurney into the OR. I then had to move onto the OR bed, which is either tilted so your head is lower than your feet, or has pillows or towels to place under your shoulders to tilt your head back. 

Dr. B, who does the procedure under fluoroscope, inserted a catheter up my nose and sprayed dye inside my nasal cavity to detect where the medicine would land. If the dye doesn't show itself as landing on the sphenopaletine ganglion, then he would attempt to maneuver the catheter and spray dye again. This is the uncomfortable part, because the catheter usually ends up touching the sensitive insides of the nose. This is also the part where I had a massive sneezing fit and proceeded to sneeze all over poor Dr. B. Luckily, he has a sense of humor and took the whole thing in stride. 

A word of warning - the dye used for this procedure will drip down your throat and, while it doesn't necessarily taste that bad, it is thick and may cause mild choking. There should be a nurse standing by with apple juice, or something similar, to help you wash it down.

Once the dye shows it is reaching the sphenopaletine ganglion, Dr. B replaced the dye with lidocaine. It will be sprayed in the same manner as the dye, but the lidocaine has a bitter taste. Once again, apple juice will be your best friend!  

The whole thing is then repeated in the other nostril. After it was done, I needed to stay lying with my head back for about 5 minutes. Then, I was wheeled to a recovery room and given more apple juice.  Once the nurses were sure I was able to stand on my own with no dizziness, I was allowed to dress and leave. 

I had some minor sinus pain for a few days following the procedure, and after that - relief!  It really does eliminate (or at least lessen) the pain in my forehead and behind my eyes. I can tell when it's starting to wear off and, after a few more SPG blocks, discovered a pattern. It would begin to wear off after approximately 3 months (the length of time it lasts varies from person to person). So now, every 3 months, I make a trip to Trevose, PA and get another SPG block. I am very pleased with how this treatment is working for me and would definitely suggest trying it at least once to anyone who suffers from pain in the forehead and behind eyes.

Origins - Part Six (or "Ketamine!")

One year, during the winter, I had a really tough time. I tried both infusion and inpatient treatments, and neither worked. Dr. N informed me that there was a trial being conducted to see how headache patients reacted to treatment with ketamine. Since so far the results had been good, I decided to give it a try. I soon regretted my decision.

It started out fine. I was admitted to the Jefferson Gibbon building and set up in a room. I don't remember much of what occurred just before and during my stay, however. Ketamine is a very strong drug and, as it turns out, I can't handle it very well. It began with some mild hallucinations. That wasn't too bad, because it was common for me to have mild hallucinations during my stays in Methodist. However, as the amount of ketamine I received was increased, the hallucinations became more vivid and frightening. I don't remember most of them, but there are two that I do recall - that a pair of dragons were flying over my bed battling each other (which wasn't so bad) and that a very creepy doll was sitting in the corner of my room staring at me (I was not a fan of that one). 

Shortly after the hallucinations increased, I began vomiting. Constantly. Every time I ate, I threw up. It was extremely unpleasant. They tried turning down the ketamine for a while, which worked, but as soon as they turned it back up, I couldn't hold down any food. 

The last straw was when I became depressed. I must admit, this part is difficult to talk about. A couple of days of vivid hallucinations and constant vomiting would cause anyone to be a bit depressed, but this was extreme. I was crying inconsolably and I kept telling my mom I didn't see the point in living and that I had no purpose in life. A nurse was placed in my room to monitor me and make sure I didn't hurt myself. 

I do, in fact, suffer from depression. I'm not afraid to admit it. But I am not suicidal. So it was obvious to my mom that, while what I was saying was distressing, it wasn't really me talking. It was the ketamine. Unfortunately, that didn't make it any less real. It was a very scary time and I hope I never have to feel that way again. 

To be fair, ketamine has worked for many people, including another patient who was there at the same time as me. But, I want anyone who is considering ketamine treatment to be prepared for the possible side effects. Like I said, it is a very strong drug, and even low doses can mess with you. I highly suggest that if you are considering ketamine treatment, that you have someone there willing to be your advocate, for those (possible) times that you may be too sick or too high to advocate for yourself. I was very fortunate to have my mom there with me, although I am sorry she had to witness my meltdown. It's not something I would have wanted anyone to witness. 

That's it for Part 6. Coming soon, Origins Part 7 (or "The Time I Sneezed On My Doctor")! I promise, it will be much more upbeat (if you couldn't tell from the title). 

Origins - Part Five (or "The One With All The Diagnoses")

My return to Jefferson Headache Center was marked with a ton of paperwork. Just like the first time I had gone, I was required to fill out sheet after sheet of paperwork detailing my pain, my medical history, my medications, and my psychological state. I met with a psychologist (Dr. K) and the person who would become my new neurologist, Dr. N.

Once all the routine questions were out of the way, Dr. N began telling me what Jefferson could do to help me. Unlike Johns Hopkins (to be fair, Johns Hopkins may have changed since I've been there, but at the time I left, these options were not given to me), Jefferson taught patients how to self inject certain medications, including DHE and Toradol. They also offered 3 day outpatient infusions (posts on my infusions can be found here, here, and here) and inpatient stays in Methodist (posts on Methodist can be found here, here, here, here, and here). I was given new meds to try, including the injectables and told to call the nurse's line if I had any issues (the nurse's line is open Monday through Friday from 9 am to 12 pm. You leave a message and they return your call within 72 hours). 

After a few visits, Dr. N reccommended I try Botox to help reduce the frequency and/or severity of my migraines. The first time I tried it, the injections were quite painful and I didn't notice any significant change. Dr. N told me it could take up to three tries to notice a difference, so I decided to try the three times. I went every three months and after the third round, I began to notice a difference. That was over three years ago, and not only are the shots less painful now that I'm used to them, but I can tell about two weeks before I'm due for my next round that it's beginning to wear off. 

Also during this time, I was given a tilt table test and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). During one of my stays in Methodist I developed a blood clot and was later disagnosed with Factor V Leiden, a blood clotting disorder. And after that, I was diagnosed with Fibromyalgia during a visit to my neurologist. Which means, all told, I have 12 different conditions, 6 of which are considered common (fibromyalgia, TMD, chronic migraines, anxiety, depression, and eczema), 5 of which are considered rare (Postural Orthostatic Tachycardia, Ehlers-Danlos Syndrome, Intracranial Hypertension, Factor V Leiden, and Halo Nevi), and 1 that some believe is rare and others believe is not (Chiari Malformation). 

Coming Soon - Origins - Part Six!

September is Chiari Awareness Month and IIH Awareness Month!

Chiari Awareness Month officially starts today! I urge everyone to check out the Conquer Chiari website for more information, including FAQs, guides, and current research in the field.

And the Conquer Chiari Walk Across America takes place on September 19th! If you would like to walk, please check out the list of walking sites here. 

If you would like to donate, you can do so here (you even get to chose the location and person you would like to sponsor with your donation!). 

Also starting today is Intracranial Hypertension (IIH) Awareness Month! For more information on IIH (including news, events, and research) please visit the Intracranial Hypertension Research Foundation website. And if you would like to donate, you can do so here.

Happy Birthday!

Today is my 30th birthday!  I remember, back when I was 19 years old, freaking out because I would be 20, and no longer a teenager. And if I had known what my 20s were going to be like, I probably would have been even more freaked out. Because my 20s weren't fun. Sure, they had their fun moments, but those moments were overshadowed by brain surgery, hospitalizations, gall bladder removal, and more diagnoses than I have fingers. That's why I'm so excited about my 30s - because I want to make them everything my 20s were not. That's not to say there won't be any medical problems in my 30s. I really can't prevent that kind of thing. But I can meet my 30s with joy and excitement instead of dread. I am determined to do the things that are traditionally done in your 20s: get a job, find an apartment, maybe date and find someone to love. And if I don't accomplish these things, that's ok, because I tried. 

Even more important, I have friends and family backing me up. They're the reason I made it through my 20s with some sanity. They were the bright spots in my life when everything else seemed dull and grey. They never gave up on me, and for that, I'm eternally grateful. I don't know what I would do without them and I don't intend to find out. So if you're a friend or family member reading this, guess what?  You're stuck with me!

My Present and Future

Since I'm already writing posts about my past (the Origins series), I thought I'd write a little something about my present.

Currently, I'm on social security disability, which means I am not working. But that doesn't mean I do nothing aside from running this blog. Things I have going on this week (August 17-23) include:

Monday ( 8/17; today) - take morning medicine, balance checkbook, take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine

Tuesday (8/18) - take morning medicine, morning appointment for Botox, take afternoon medicine, get brother off the bus and set up his enteral feed (if feeling well enough after Botox), spend at least one hour writing or doing writing prep, take evening medicine

Wednesday (8/19) - take morning medicine, take afternoon medicine, get brother off the bus and set up his enteral feed, go out with my best friend (in the evening), spend at least one hour writing or doing writing prep, put new post on blog, take evening medicine

Thursday (8/20) - take morning medicine, go to supermarket, exercise for at least 30 min (Move! Bollywood via DailyBurn), get allergy shot, take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine

Friday (8/21) - take morning medicine, morning appointment with weight management doctor, exercise (Move! Club via DailyBurn), take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine

Saturday (8/22) - take morning medicine, exercise (Move! All Stars via DailyBurn), take afternoon medicine, spend at least one hour writing or doing writing prep, take evening medicine

Sunday (8/23) - take morning medicine, clean bedroom and bathrooms, do laundry, take afternoon medicine, put new post on blog, spend at least one hour writing or doing writing prep, arrange schedule for next week, take evening medicine

This is just a general overview of things I have scheduled to do weekly. Throughout the week I also watch tv (or Netflix or YouTube videos), read (A LOT. Like, excessive amounts of reading), spend time with my pet sun conure, hang out with my sister and brother-in-law, etc. 

To be honest, I used to be angry and bitter that my life wasn't working out the way I had envisioned. I had no job, I lived with my parents - things I saw as a sign that I was a failure. I was ashamed of myself. But someone very wise once told me I was getting something that many other people don't get: time. Time to explore my interests. Time to find out what I'm really passionate about. Time to learn about myself. Time to take care of myself. Time to learn how to be an adult slowly, rather than all at once. While I don't know what my future holds, I know I'm much more prepared for it than I would have been otherwise. And while I'll never be grateful for my medical conditions, I am grateful for the time they have granted me. 

Methodist Days 4-8

Not much happened on day 4. I was able to sleep a little bit after taking an ambien. I also had trouble concentrating and focusing my eyes. Between the meds and the ambien, I slept more during the day, which screwed with my sense of time. At 11 pm, I called my dad because I though it was 11 am!

On day 5, I woke at 3 am. I tried going back to sleep and woke again at 7 am. The only other notes I have that day were that I hallucinated a bug on the floor and that I dropped my cell phone and it fell under the bed. The nurse had to get it for me. Oh! And I took another ambien and ended up writing the letters ALR in my notes. I have no idea what they were supposed to mean but I guess I thought they were important because I made them really dark.

My notes (with the random letters). As you can see, my handwriting became sloppier as the days went by

On day 6, it was the 4th of July. I took a lot of walks this day. At night, I walked to a large window at the end of a hallway and stayed there to see if there were any fireworks in the area. I saw a few, but I also saw a group of people wearing black robes and horror movie masks. They travelled in groups and some of them scaled the walls of nearby buildings. Obviously this was a hallucination, but at the time I thought it was real and I was very freaked out by it. 

On day 7, a steroid was added to my collection of medications. The doctor also increased one of my daily meds (mexiletine, which has an off label use for treating migraine pain).

Finally on day 8, I was released. While I was waiting for my discharge papers and for my PICC to be removed, I took some pictures of my telemetry monitor. 

This is what the cords and strap look like at first

This is what the cords and strap look like after about five minutes - hopelessly tangled!

PICC line removal is pretty easy. You turn your head to the opposite side while laying down, take a deep breath, and then while it's being pulled out, you blow your breath out. The breathing trick distracts you so you don't even feel the PICC line being removed. 

And that completes my stay at Methodist! Coming soon - continued Origins posts!

Methodist Story Time!

This post isn't actually about my last stay in Methodist (which was in June/July). This is about my previous stay (which was in March). 

When I was admitted in March, I was considered an emergency. I had gone in for infusion and two days later, ended up in the ER with severe pain. I saw a nurse practitioner the next week and they admitted me to Methodist on the same day. Unfortunately, they didn't have a bed available for me right away, so I spent most of the day waiting and in pain. Finally, a room was made available and I settled in. Among my belongings were two chargers - a white iPad charger and a black Samsung phone charger. 

I later found out the person who had the room before me was a man. I know this because he came back and tried to break into my room. It turns out he had left his cell phone charger behind when he left. He called the hospital and was informed that the charger had been found and was placed in a locked office. The woman the office belonged to had already left, so they told him to come back the next day and pick it up. 

However, that night, after visiting hours were over, he showed up. He arrived as a nurse was exiting my room and saw my chargers. He then began shouting in the hallway, insisting that my black cell phone charger was his. He tried multiple times to get past the nurse and into my room. I sat there in my bed terrified that he would get in and hurt me. 

The nurses were eventually able to get into the locked office and retrieve his phone charger. After he left, I told my nurse that I had been afraid and she told me she would have tackled him rather than let him in my room. I had always liked all of the nurses who work the headache unit, but she became my favorite. She later called the security desk, furious, to find out why they had let him up. I don't know what they told her, but an investigation was launched and I was questioned about what happened by security the next day. I don't know if anything ever came of the investigation because I never heard any more abut the incident after that. 

And that's the most exciting and frightening thing that ever happened to me at Methodist. I would like to reassure anyone going into Methodist that this is not a common occurrence at all. I had been in Methodist at least five times before that incident and nothing like it had ever happened to me or anyone else (that I know of) during my stays. I hope that since this occurred, security has been tightened and it will hopefully never happen again.

Coming soon - Methodist Day 4!

Methodist Day 3

I slept not a wink the night going into day 3, so at 4 am I gave up. I asked the nurse if I could have a shower, since I knew she'd be busy later in the day. She disconnected my meds and telemetry monitor and wrapped my PICC line in plastic (it isn't supposed to get wet). Also, you only have 15 minutes before you need to be hooked up to your meds again, so you need to shower quickly. While I was in the (tiny) shower stall, the nurse changed my bedding. After I was done, she decided to change the dressing on my PICC since it had bled some the day before. This occurs in the room, but they try to make it as sterile as possible, so you and the nurse both wear masks. There is little pain when it's changed - the only thing that hurts is when it's cleaned and that only burns a little bit.

A couple of hours later the lab technician came to draw my blood again (they do this every morning to make sure you aren't getting too much lidocaine. They were unable to get a vein so they told me to drink more water and that they would come back later. When they did come back, they were able to get the blood.

Speaking of lidocaine, I realized that I never actually said what other medications I was getting. Here's the list:

DHE (I was getting a very low dose. They tried to increase it but it made me very nauseated, so they lowered it back down again). 

Toradol

Magnesium

Haldol (it has an off label use for migraine treatment)

Benadryl (by mouth)

Cogentin (by mouth, to counteract the side effects of Haldol)

Xanax (by mouth, as needed)

Ambien (by mouth, as needed)

Plus the meds I regularly take on a daily basis. 

I also had more classes this day. First was MAPS, which is hard to explain, but it's a good class. And afterward was Nutrition, which I only vaguely remember. My meds had been increased and I hadn't slept so I was very sleepy by that point and spent most of my time trying to stay awake.

Later in the day I requested some miralax. Just a heads up for anyone going into Methodist - you will get constipated. I highly suggest you request miralax and walk as often as you can to prevent this but only request the miralax every other day, other wise you'll get stomach pains. I speak from experience!

Coming soon - Methodist Story Time!  I explain about how during my previous stay, a man tried to break into my room!

Methodist Day 2

I woke up often the first night in Methodist because people kept coming into my room for vitals. Then around 6 am, I was woken up for a blood draw followed shortly by someone stopping by to clean the room.

My bracelets and bandage for blood draw

Breakfast was served not long afterward. The food was bland, but edible. You do get options, which often change day by day. I had a little trouble eating because my hands were slightly stiff and swollen from all the fluids I was getting through my PICC.

Breakfast - french toast, sausage, and an apple

Later on, I had to go to class. Yes, there are classes and you are highly encouraged to go unless there are some extenuating circumstances (for example, you are sick from the meds). They are held in a small conference room in the 6th floor.

Class schedule

As you can see, I had Posture Training class first. It was a good class. The instructor went over the negatives of having bad posture and the positives of having good posture. She also gave some tips and tricks to improve your posture. 

Next was Biofeedback class, which was awesome. First the instructor went over what biofeedback is, then she led us through an exercise, which was very relaxing. 

At noon, we had a break during which we returned to our rooms for lunch.  Again the food was bland, but edible.

Lunch - chicken, mashed potatoes, and carrots, with diced pears for dessert

After lunch, we all headed back to the conference room for Yoga class. Yoga was good. The instructor went over the benefits of yoga and then lead us through some simple exercises that could be done from a chair. 

WARNING - both myself and another patient had our PICC lines start bleeding during the yoga class. Her's was much worse than mine, and she had to leave class to get it fixed. Mine only bled a little and it stopped on its own, so I didn't have to have anything done.

After class I alternated sleeping and watching television. Dinner arrived and, at risk of sounding repetitive, it was bland, but edible.

Dinner - macaroni and cheese (with a random orange garnish) and orange sherbert for dessert

The only other thing that happened this day was that my IV pump kept beeping, so I had to repeatedly call the nurse to fix it.  Eventually it calmed down and I was able to (attempt) to go to sleep. I say attempt because I didn't actually sleep, but more on that in my next post. 

Coming soon - Methodist Day 3!

Methodist Day 1 (Part 2)

And now for my least favorite part of going into Methodist - getting a PICC line. This time was even less fun than normal. It started when the transport person came to my room with a bed to take me to the surgical suite. He took my down a few floors on the elevator and then delivered me to a large room labelled "Prep and Recovery". I was left in bay 3. At this point I assumed I was waiting for the surgical suite to be open, because they usually do it in there, under fluoroscope.  It turns out that the surgical suite was unavailable, however, so a woman came in to place the PICC where I was.

I've had it done without fluoroscope before, so I wasn't too worried.  Getting a PICC normally isn't very painful, just uncomfortable. First, the person doing it will get all of their supplies ready. Then they will place a sheet over the area and then, if under fluoroscope, search for a good vein. The woman doing mine decided to use my basilic vein in my right arm (the last time I had a PICC they used my left arm and had trouble placing it, even with fluoroscope. They said I had some scarring in my veins that caused the problem and to avoid having a PICC placed in the left arm for a while). She then cleaned the area and injected my arm with lidocaine (not gonna lie, it burns, but it isn't too bad and it doesn't last long). Then, normally, you would only feel some pressure as they use a needle to place a wire guided catheter in the vein. The wire keeps the catheter stiff enough to place correctly (you can find out more about PICC line placement here).

This time, however, I felt pain, despite the lidocaine. The woman doing it said the vein was a little deep and that might be the cause of the pain. Once she had the PICC line placed, she left to call mobile x-ray. I noticed at this point that every time I held my arm in a certain position, I would get a sharp pain just under where the PICC entered my arm, which had never happened before. Then, the x-ray technicians arrived and took an x-ray of my chest, to make sure the PICC was placed correctly. Unfortunately, it wasn't. Instead of going down, toward my heart, it had gone up, into my neck. So she had to pull the PICC line I had in (which doesn't hurt but does feel weird), and place a new one. 

Also unfortunately, she had to push on the area that had been hurting to place the new line, which made things quite painful this time. Eventually it was placed though, and the new x-ray showed it was placed correctly. All that was left to do was apply the dressing and send me back to my room.

My PICC line dressing

There were only a two other things that happened that day. First, my telemetry monitor was brought in and attached to monitor my heart.  

My telemetry monitor

Then an IV pole and pump was brought in and I was hooked up to my meds.

My IV pole

And that was it for my first day. Coming soon - Methodist Day 2!