My Mom...part 2

Also, I know many of my friends are reading this, and many of you have commented about it to me and some have only mentioned it in passing as if it's a secret of mine. Let me just say, I don't want this to be a secret anymore. Feel free to ask me questions! I don't mind.

It is Dec 17th: For 3 days now Jess’s attacks are increasing in number and severity and he won’t sleep in his room alone…he now wants to sleep on the floor in our bedroom. On that evening his heart is pounding so loud you can hear it. He says his fingers are tingling and he can’t breath. I am sure it is an attack, but what if it isn’t??? Jesse doesn’t know if it is or not, so how can I? We are again at Salem Hospital ER. They say it is anxiety. Buspar has been added to his med list. But nothing helps him. Every day is bad. On the 21st he moves to 2 Buspar a day (10mg each) and it does nothing for him. He is at a standstill in life. He is not even going through the motions. On Jan 4th Seroquel gets added, .25 twice a day. After 2 days of sleeping for 20 hours, I pull the Seroquel from him on my own. On Jan 7th he sees a new Meds doctor…Lisa D’Silva, who works out of Salem Hospital. She prescribes:

Prozac 10 Oh God...reading this... I know whats coming from this damn medicine
Celexa stays at 30
Buspar 10
Rispidal .5

And he starts the new ones one the next day, on January 8th. 2 days later on January 10th, Jess is not doing well at all. He is highly agitated and is very angry. Almost acting like a “mad man”. I call Dr D’Silva and it takes 3 days for her to call back, and I leave 4 messages for her! I tell her I think it is the Prozac doing this to him. He is out of control. He is sensitive to meds and I read on line some side affects of Prozac. I tell her he should come off it. She ignores that and says he might need to be admitted to the hospital to control him since he can’t be “managed”. Then she decides that we should up the Prozac to 40! She says he needs it. Let's take a minute to think about this. I am showing abundant KNOWN symptoms linked to a certain drug. I have suffered for a countless number of months trying medicine after medicine with every known side effect possible and this psychologist knows it. To push this knowledge to the side and consider this an adjustment period is being reckless to a patients health...TO MY HEALTH. The events to come are what happens when a physician or health care provider only looks at symptoms as an overly simplified statistic they put on the back of bottles.

I don’t know what is right or wrong, I am not a doctor. But Jess is losing touch on reality. I have to try it. The next day Jess is worse. He is getting angrier each day. He tells me he can’t spell anymore. I ask him to spell cat. He spells it correctly. I tell him so. He gets mad and tells me he didn’t spell it right. I said ok, spell it again. He again spells it correctly. I tell him so, even repeat how he spelled it back to him. He is yelling at me…telling me he never spelled it that way. He tells me he is spelling it wrong and why can’t I understand that. He wants me out of his room. He is angry and he is scared. So, this is an event I remember incredibly clear, however I don't remember this happening in my room but rather on the phone, but it very well could have taken place in both places. Before this happened, I was on the phone (I can't recall why...possibly ordering food) and I gave my fathers named, Harvey. They didn't understand so they asked me to spell it. The first thing out of my mouth was "hey-ch", a strange merging of the sound an H makes and the name for the letter. To me, in a completely deteriorated mental state, this wasn't right. I was losing it and kept saying the letter on the phone, slowly diving into a state of panic, worry, and confusion. I hung up immediately and continued to repeat the letter which I could not get to sound right. I immediately called my mother telling her somethings was wrong...I couldn't spell...It didn't sound right. Needless to say, I was just a tiny bit freaked out!

I call Dr, D’Silva again. She says to wait out the Prozac. Thanks doc! I spend the next hour doing what I had been trying so hard not to...I cried. On Jan 19th I call her and tell her I want him off of the Prozac. He is a zombie, yet a highly agitated one. He is not Jesse anymore. She agrees to bring him down to 20 mg. On Jan 24th he has the worse day ever. He won’t shower, won’t shave. He can’t be alone, but doesn’t want me or Harv near him. His is gaining weight although not eating very much each day. (He will end up gaining over 48 pounds in 3 months time.) (I grew from 150 to 198...I wish I had pictures to show but, to be honest, I'm not sure I want them on the internet. It was baaaddd) His face does not look like Jesse anymore. He starts hallucinating about the rods in his leg and tells me they are poking out. About 11pm Jesse tells me the rods are coming out of his leg and we need to go to the ER. He won’t stop repeating it. He is yelling. He is truly scaring me. I call Dr D’Silva, she is not on call but a Dr. Printz is. He says to take him to the ER. This was by FAR the worst traumatic event caused by the medication. I truly was hallucinating that the two titanium rods in my femur (Which I'm sure I'll talk about at some future time) were protruding from my bone and about to rip out of my skin. In my head, I could see them popping out and the blood spilling down my bed. I could feel my skin stretching and ripping. I could even see myself screaming for help with no one coming. I wasn't just afraid this was going to happen, I was convinced it was going to happen IMMEDIATELY. If I didn't get to the hospital, I'd be a goner.

Harv and I start driving there but I am trying to convince Jess to wait until morning. I hate the ER at night (Let me just point out the irony of this statement, considering my desire to go into Emergency Medicine...But I digress) and think maybe he will lose the idea by morning. He agrees not to go, but first thing in the morning he is on the idea again. He looks very sick. We go to the ER and the doctors there agree he should come off the Prozac. On Jan 27th he is given by Dr. D’Silva, Klonapin .5, to be taken 3 times a day. He sleeps all day for 2 days. I take him off that myself. On Feb 5th he goes up on the Celexa and gets Serequel added again…25. He again sleeps 20 hours. I call Dr D’Silva and it gets cut in half. On Feb 11th he is still sleeping 20-22 hours a day, He can’t function at all. I call the doctor again and she says just to continue it. I decide I have to take control and I give him a fourth of the dose. It doesn’t seem to change his sleeping much. The next day I stop it completely and call and tell her so. She does not seem pleased. He begins staying awake at least now that he is off all the meds. On Feb 16th Jess is having severe stomach pains and has constipation, so we are again at Salem Hospital ER. While there, one of the nurses observing Jess’s behavior and listening to my frantic cry for help, suggests the day program the hospital has. Jess can come daily for x amount of weeks and be monitored. The best part it is run by the woman who prescribes Jess’s meds!! I am wondering why she, Dr, DiSilva, did not recommend this herself, but what a great idea!! He can be watched! They can see what meds he really needs and how he acts and maybe can get a direct insight into how to help him!!! I am excited!!! There is a waiting list, but they will call me after they contact Dr DiSilva. We meet with her for our regular session. She likes the idea of his being in this program. I feel like there is hope!

Sadly, my mother was naive in this case, and I was right behind her. This program turned out to be one of the most disgusting abuse of psychiatric authority and waste of government funding I have ever seen in my life. The events that occur never left me, and I am still angry to this day at the staff involved. From putting a psychologically fragile child into an environment with drug dealers and abusers to illegally holding me against my will... That one day was one of the worst days of my life.

Guest Entry 1!

This next entry, as I alluded to in some other posts, is a lot harder for me to write than anything prior. The problem is: I don’t remember a lot of this. I don’t have the ability to understand the chronology of the following events due to the mass amounts of medication I was on at the time. At this point, I was constantly on and off various medications and had yet to find anything to work, so the side effects included memory loss, which I had during this time.

To continue telling the story, I did the only thing I knew I could do…have my mother write it. The next few entries will be written by both my mother and I. The majority of the text will be directly from her, as it would be almost impossible for me to have any chronologically accurate information to tell. In red will be my commentary regarding the events she’s writing about. Without further ado, the continuation of my story!

In Oct 2004, Jesse is not doing well, but not at rock bottom yet. He is not in school, what should be his first year of high school, but still trying to go everyday. Some days he gets into a classroom for 5 minutes here and there, but most days he doesn’t. He instead spends time in the nurses’ office, but he tries to stay in the building as much as he can but never makes it to lunch time. The call comes to me to come pick him up. The anxiety exhausts him. He needs to sleep. But each morning he tries. He gets up and showers and walks down to the car. Sometimes he can’t even get in it. He needs to turn around. I know before he does. I see it in his face and body language. Day is done. He won’t leave the house other than doctors and trying school. Won’t go out for meals, just won’t leave the house, and eventually, won’t even leave his room. Everything is too much for him. On Oct 30th he has a stomach flu and forgets all about his Celexa that he takes daily. He just stops it but doesn’t realize it, doesn’t remember that he has forgotten it for days.  

On Nov 4^th he is physically sick and very agitated and acting very strangely. He realizes that day he has not taken his pill in 5 days, and thinks he may not even have even be taking it on a regular basis before that. He can’t remember. He looks so confused. (This day is something I remember very well. It was possibly one of the scariest moments of my life. I was sitting in my room at my desk while my mother was in the shower. At that point, no one else was at home and it was just us. I was sitting in my chair at my desk, surfing the internet before getting ready. All of a sudden, I get a very faint feeling unlike the feeling I get when I have my panic attacks. My body feels numb and I fall out of my chair onto the ground. Everything is spinning and I am completely unable to get up. I yelled as loud as I could, but I knew she was in the shower. I ended up crawling out of my room to her bathroom door, and banged on it until she heard me and said something was wrong...I couldn't get up)

 I call Dr Hart, the neurologist, who says to start him back on the Celexa. Jesse worsens during the next 2 days. He is unable to make coherent sentences and is jitterier than ever. He doesn’t want me leaving the house, but doesn’t want me near him either. On Nov 7^th Jesse comes to me panicked. His hands are numb and it is spreading down his arms. (Another of my finer medicine induced traumatic experiences. I remember the feeling, which I could only liken to your feet going numb after sitting on them for hours. It was one of the most intense and terrifying feelings I have had. It started at my fingers, like the feeling you get if you are hyperventilating, but I wasn't! I was breathing normally. It then slowly started traveling up and up my arms until I couldn't recognize the feeling of my own limbs.) We go to the Salem Hospital ER...it is anxiety and withdrawal from the medication. 

On Nov 22, Jesse began the generic form of Celexa, per the insurance company's request. His condition changes back to what he was like when he missed the pills within 3 days of starting them. His anxiety level is higher than ever and he can’t even leave the house to try and go to school. On Nov 29^th he is the worse yet, and almost asking me to help him without saying the words, so Harv and Jesse and I spend the day at Mass General ER. (We ended up here after going to my pediatrician presenting with some of the most severe anxiety I have ever experienced. When I went, my heart rate was peaking around 130 and my physician thought I had either a thyroid issue or my condition was deteriorating. I remember laying on the exam table and being unable to sit still, my heart feeling like it would beat out of my chest at the rate it was going! The physician suggested I head to the ER immediately based purely on my symptoms and especially my heart rate)  They believe he is having a reaction to the non generic Celexa and he goes back on the real Celexa (after a doctor override for the insurance company) and the ER doctor there, a psychiatry resident named Dr blablabla decides he should also go from 30 to 40mg. (This was also a fun experience because they thought I may be under the influence of drugs so they did a tox-screen. I'm surprised with how I was when I got there they didn't pump me full of Narcan! Even while in the waiting room, I was unable to sit. I was actually walking through the halls outside of the ED waiting room, pacing outside at every chance until my mother called me to say they called my name. The symptoms are the same I used to see when working in the ER of the patients on crack cocaine or hallucinogens. To reduce the symptoms, I remember they gave me Ativan, a drug I would later use to treat my anxiety.)  He gets better, but the panic is increasing and he is not functioning well. His short term memory is disappearing. (No no...really. It went away. Remember that whole thing about not remembering this in chronological order? Yup.) He has not been able to attend school at all, makes me turn around on the car ride there (though he tries to go every day) and the school rules say if 3 weeks of school are missed in a row, he is eligible for home tutoring, 

So on Dec 16^th that begins, and on the 15th he starts seeing a therapist at Salem Children’s Hospital. Neither goes well. The therapist, Renee Sacks, is having a problem diagnosing him and never sees the attacks, only the anxiety. She keeps mentioning his personality doesn't fit the mold. The sessions with her are quiet. She seems stumped, and sometimes says as much. I talk more than both of them put together, and when we leave her office, he has little memory of being there. (I actually don't remember her much at all from this. At this point my mind shut off I believe and I was just far too overwhelmed. I remember many of the faces of physicians I saw, but hers alludes me.) He is all over the room while there, his body is there, but I know his mind is not,  but Dr Sacks was recommended and I have no one else I know of to see. The home tutoring is a waste. He can’t concentrate, can’t think, can’t remember, can’t retain. The tutor, a woman, leaves and Jesse asked me hours later if she is coming today. He has no clue she was already with him for 90 minutes. She complains to me he is not concentrating, and isn’t doing his homework. I explain what his problem is many times. Why can’t anyone understand what he is going through. He can’t do anything. It’s not her fault I guess...if therapists can’t help him or see the problem, how can she? It seems if one can’t see it, that it doesn’t really exist. I am frustrated.

Overwhelmed

I created this blog with the single intent of telling my story to allow others to see what I have gone through, and hopefully act as encouragement for individuals going through similar circumstances. I honestly had no idea anyone would read it, let alone read the updates I post. I've had a huge response from family, friends, coworkers, and even individuals just searching the web in regards to my story so far...and I haven't even gotten into half of my story!!! It's amazing to have this vehicle to allow people to understand what I have been through, regardless of how hard it has been for me to write it, and I plan on continuing until the day I get my MD (Hopefully not when I'm 40).

This post is however not about my past, but my present. Through everything I've gone through, with my lack of a formal education, and even my struggle to become a functional member of society after being drugged up on SSRIs for 4 years, I still wasn't able to see the big picture of where I am now and where I have been. Things have changed in my life in a way I never thought possible. It's bizarre to think 5 years ago I was in bed, just hoping I could find the enthusiasm to continue with yet another medication that failed to improve my quality of life.

But now...now I'm in awe. Words aren't able to describe it. Right now, I'm sitting awake at almost 3 am not able to sleep with my head spinning just thinking about it. I'm doing things that I NEVER thought I'd do. Getting a GED was like climbing the top of a mountain and screaming "I did this. They said I couldn't but I did." Shortly after that getting an Associates in Science at a community college trumped any achievement I had prior... Yes, just an community college degree but I was beyond proud.

Then the ultimate goal...UNC. I can't put this into words either! I NEVER thought I'd make it this far after going through what I had gone through, and despite the many road bumps while here, every day was a gift. This amazing institution has opened doors I didn't know were there for me. After this summer session, I'm actually 4 classes from graduating with a Bachelors!!!! I still don't believe those words are coming out of my mouth but it's that close!

And now, the icing on the cake came this week. The privilege and honor to be working with the Center for AIDS Research working with community based projects to educate about HIV and AIDS. My passion to help individuals and love for medicine are combined into an amazing organization with some of the most helpful, supportive, intellectual, and just overall amazing people I have met in my life.

Even this Saturday I have the pleasure and honor to be speaking at an event organized by a community based organization, "The LaStraw, inc.", to help education their community on HIV myths and the resultant stigma. Never did I think I'd have these opportunities after everything... And I am so thankful for everyone that has helped me along the way. I wouldn't be able to do any of this if it weren't for you guys. So thank you all. For everything. And I promise to update this blog, but I just needed to get this out!!!!

Jesse

Long Time Coming

So I've been putting this post off for far too long. The main reason, is my memory of this time period is less than hazy due to the plethora of medications that I was put on to "help" the anxiety and panic attacks. The entirety of what should have been my high school is foggy, and at many points my memory is completely gone, but I will document as much as I can with what little information I remember. I will ask my parents for details to fill in but expect many unanswered questions here that you can feel free to ask me either in the comments or by email OR in person if I know you. The following is from the beginning of freshman year up until the beginning of October.

I left off with a lame cliff hanger and I apologize for the long delay but here we are. I've had my first panic attack in over a year and I was scared. I ended up going home that day early from the nurse and thought about other factors that could have happened...Was it maybe just something I ate or some virus I had gotten causing a trigger for a panic attack? Doubtful. I went back to class the next day and the same thing happened. Things only got worse from there and the panic attacks became more severe and occurred every day shortly after arriving to class. There was no doubt the anxiety and attacks were back, and far more severe.

After about a week, we called my neurologist, Dr. Hart, and tell him everything is back and the medication no longer works. He advised I see a behavioral therapist to treat me in addition to the medication. The theory here was that my medication WAS still working and that the proper treatment in this case would be to treat what was left over with behavioral therapy. Now, I understand what behavioral therapists do is incredible and can help people in amazing ways. I completely support them for this reason and please don't let my following story set a negative opinion in your heads.

I met with the therapist a few times discussing my history, attacks, and treatment up until that point. It took around 3 weeks to inform him of everything up to this point and discuss a treatment plan. He decided, as he had agreed there was no apparent trigger other than subconsciously, to develop skills to become comfortable with the symptoms and sensations that occur during the panic and anxiety attacks. He thought that, since during my panic attacks I became extremely dizzy and felt like I was going to pass out, by making me experience these sensations I could trigger a panic attack. We started by putting me in a chair and spinning as fast as possible and then stopping. When this failed to cause an attack, he tried again multiple times to no avail. We next tried to caused a sensation similar to being about to block out; standing on ones head. This is where it gets ridiculous. He put me against a wall, had me do a handstand, and held my feet up against the wall without letting me get down. He kept me there until I told him it was starting to hurt my head and neck, but didn't allow me to get down. After complaining more about this failing to work and only causing me physical pain, my mother intervened and demanded he let me go.

That was my last visit to that doctor...and I can only hope he was removed from the practice.

It was the beginning of October and I had still not been able to stay in school for more than an hour without heading to the nurse. I would never give up the hope that I could go to class and learn, but it always ended up with me excusing myself and going to the nurses office. I don't believe I ever lasted more than 5 minutes in a class. I'd always just go to the nurse, sit in the back room with the blue couch style beds, and lay there hoping the symptoms would subside so I could go back to class and at least try. All I wanted was to sit in class for one whole session and learn. All I wanted was to stay in class and learn...