Monday, September 30, 2013

How Inadequate Health Care in College and Two Untreated Conditions Triggered a Cycle of Misery

Okay major update time! I know many of you have been concerned and worried about me so I wanted to update you all to let you know that I am now on my way to recovery. If you've been following my blog or facebook page you have probably seen many posts over the past two weeks or so that start with something like "It's 3 am and I still can't sleep", "I'm itching like crazy and I don't know why", or "I'm ticcing like crazy and it's awful and I need to find something to help it get better because it's just so bad right now that I can't function". Basically I started itching like crazy two weeks ago, my tics got really really bad, my OCD got really bad, I couldn't sleep more than a few hours per night, and I was highly sleep deprived and incredibly itchy and uncomfortable on a constant never ending basis , and in a lot of pain, and couldn't think straight for a solid two weeks.

I was on the phone with my mom crying at least 3 times a day telling her I was miserable, I went into student health services at my college about 4 or 5 times begging them for an solid answer or for some kind of relief, and got behind on my school work and was legitimately considering that the only option left was to take a medical leave of absence from college.

The sad thing is that the whole two weeks of suffering could have been avoided and would never have happened if I had had the legitimate medical care that I was denied by the student health center. All of this suffering and misery was the result of a type of common and a fairly harmless mite called Scabies which I became infected with when I visited a friend and slept on a scabies infested couch in her common room for three nights. Scabies commonly spreads through college dorms, child daycare centers, nursing homes, camps, and any other environment where there is close contact with a large number of people. It's just about as common as lice, although not many people know that, and although they cause a large amount of misery when left untreated, when treated properly they are harmless, easily eradicated from your system with the proper medication, and mostly all suffering can be avoided!

Student health services first misdiagnosed me with the scratch itch cycle, which in other words could be called "you're just itching too much for no real reason". When they did diagnose me finally with Scabies after I had been though a week or suffering already, they  gave me a non-FDA approved treatment for scabies, a very low dose or antihistamines, and told me I could not go on a higher dose and that there were no other options to relieve the constant and agonizing itching which would continue for another two weeks after treatment despite the fact that I went in about 4 times begging for some kind of relief and describing to them how I was pretty much non-functional.

In addition, I developed extreme bladder pain one week after the itching started. I had a simple bladder infection which I had gotten in the past as well. I also went to Student health services to ask them to test me for a bladder infection. They took a urine sample but once they had it they refused to test me for a bladder infection because they claimed that my symptoms were more indicative of cramps even though I was not on my period and had never had cramps like this before even when I was. So on top of everything already, I was left with an untreated and quickly growing bladder infection that went untreated for a week and a half.

The constant itching, pain from the bladder infection, deterioration of my daily functionality, helplessness, hopelessness, and the prospect of looking at another two weeks like this was too much for me to handle on my own with a limited ability to think clearly or think logically at all really due to extreme sleep deprivation, constant ticcing, and severe OCD resurfacing.  The extreme itching and sleep deprivation combined with with frustration and inadequate health care was the cause of the intense increase in tics, sensory processing difficulties, and OCD. And it all could have been avoided! Grrrr!

Basically on Sunday, I reached an ultimate low that I have only ever experienced one or two other times in my life. I called my mom crying, and she knew that the situation was deteriorating fast. Thank goodness for my mom's logical thinking skills when my own thinking and problem solving was not there. She told me she was coming to pick me up and that she was going to bring me to an urgent care facility.

The people at the urgent care facility were wonderful! They told me I did have Scabies, I had an extremely bad bladder infection, and told me that they could completely rid me of my itching within about thirty minutes and cure me of the Scabies for good in about 48 hours. And they were not lying! They gave me injection in my lower back that was very painful but I didn't even mind because I was willing to do anything to get some relief and completely rid me of all itching within 30 minutes. They also gave me the correct FDA approved Scabies treatment which is a cream that you rub all over your body and then in 24 hours you are no longer contagious. I did that last night so I should be Scabies free in another 12ish hours and then just to be safe I do one more treatment in 7 days to make sure all of them are gone. They also way upped my dose of anti-histamines (pretty much tripled the amount the student health services put me on) , gave me a large dose of Prednisone to take in the morning also for the itching, put me on antibotics for my bladder infection, and put me on Permidian to get rid of my bladder pain which took effect and made me pain free in 30 minutes. So with proper medical care, I was pain free, itch free, and free of all discomfort within 30 minutes of treatment.
I have been itch free, pain free, and free of all discomfit ever since and like I said before, this should all be over completely in 7 days, but I will experience very little to no discomfort at all from now on during the treatment. Thank goodness for the miracle of modern medicine! I slept thorough the entire night last night for the first time in two weeks and feel just like myself again. I'm playing a lot of catch up now in school and certainly would be in a better place if I was treated sooner, but I feel good again now and I am beyond thankful for that. My tics and OCD have also returned to their normal level as well. I am so glad about that! My tics are so much better and I don't feel that horrible feeling of not being able to get rid of the urge to tic no matter how many tics or how hard you do your tics. That feeling is just awful and I absolutely hate it.

I learned a lot though. I learned that my mom is there for me when I need her even though I sometimes think she isn't supportive of me or of my health concerns. She even helped me deal with my OCD on the phone when I was freaking out. I also learned that although things like this really exacerbate my tics and OCD, I am resilient and as soon as the trigger is taken away, things will go back to normal and I will bounce back. That was one thing my OCD kept forcing me to think, that even if I did figure out why I was so miserable and what was wrong with me that my tics would never go back to their regular level and that my OCD wouldn't either. I kept thinking that I would never get out from underneath that emotional warzone, but now I know that that's just my OCD talking and that I will get better and I will bounce back as soon as I am treated!

My mom is going to call the student health services and formally make a complaint to the person who is in charge and I am never going to student health services again. From now on I will go off campus whenever I have a medical problem. Fool me once, shame on you; fool me twice, shame on me.

Thursday, September 26, 2013

Beware of the Itch-Scratch Cycle

Okay time for an update. Basically my huge increase in tics and inability to sleep at night was caused by the scratch-itch cycle. Be careful if you are itchy, have dry skin, or have sensitive skin, or sensory hypersensitivity not to scratch excessively!!!! You will regret it so much!!!!

The basics: I have very sensitive skin because of my sensory hypersensitivity so when I was exposed to some irritant I started scratching and scratching and didn't stop for about three days. The result= swollen nerve endings, overproduction of histamines,  and horrible horrible itching everywhere. At least that's what the Student health services people told me is going on. So they put me on 5 different types of anti-histamines all of which make me tired. So i'm pretty drugged right now, but the good news is that the medicine helps! When i'm on it, I get a reduction in the itchiness feeling by about 80-90% and then when it wares off I feel it again and take more meds.

Also the good news is that I slept pretty much all through the night last night! It was pretty great considering I hadn't slept hardly at all this week. After a long time without a good night's sleep, I really needed that. So for now i'm on the antihistamines until the itching stops. I've been on them now for almost two days and the itching continues whenever the meds wear off. I am hoping the itching will stop soon so I can get off these meds. They make me really tired and make parts of my body ache.

Tuesday, September 24, 2013

A Rough Night and Seeking Help

Last night was really rough for me. I think it was one of the roughest night's i've had, and i've had a fair amount of rough nights. It took me about two hours to fall asleep in the first place because my tics were so bad, then I got about an hour of really restless unsatisfying sleep and then I woke up because of my tics. 

For about two or three more hours I couldn't stop scratching and ticcing. At first I thought this itching thing was just a sensory reaction or possibly a tic, but now it's just getting worse and worse to the point where its pretty much constant. I am starting to think it's some kind of anxiety reaction, but I'm really not sure. I'm in the process of trying to figure that out now, but last night was really rough. The itching thing really made me frustrated and my tics got really really bad and wouldn't stop no matter what I tried. My entire body was jerking really hard and all of my muscles were contracting and locking up. At one point it was so bad that I felt like I was going to throw up. This was the first time I have ever felt like that because of tics, so I started panicking which made everything worse of course and it was just a vicious cycle of ticcing and panicking and frustration.....I am really hoping today my tics are going to be better but so far the itching isn't any better yet....

I've reached the point where I really do need outside help. First I am going to try to see someone to try to figure out what this itching thing is all about and then I'm going to try to get help from someone who knows more about Tourette's than I do. It's hard to think sometimes that I doctor or therapist would know any more about Tourette's than I do, but I have to maintain some hope that someone can help me. I want to try to avoid tic medication to see if I can get things under control without it first before I turn to medication.

Monday, September 23, 2013

The Waxing and Waning of Tics....

I've been having a rough couple of days with my tics. They weren't all that bad for a little bit, but with the waxing and waning of Tourette's you always know that with a period of time where your tics aren't all that bad you also get a period of time when your tics get bad again. Sorry if this post isn't very well written, my brain is just fried and tired but I still felt the need to post this.

Anyway yesterday I was having a sensory reaction/ tic, i'm not really sure what it is truthfully, where I just scratch everywhere on  my body really really hard. I will just have this horribly uncomfortable feeling where I feel like I need to climb out of my own skin when this is going on too, so its really not very fun at all. So i've been itching and scratching everywhere and ticcing A LOT too. Its like my body has been having a meltdown the past two days. I've ended up falling on the floor and writhing around quite a few times between yesterday and today because of my tics. It makes me feel really silly to be laying on the floor ticcing and squirming around. Right now my neck and head really hurt and feel uncomfortable from all the tics i've been having and all the scratching too.

When my tics are this bad and when I feel like I constantly want to climb out of my own skin, I feel like I just can't be very productive because every time I go to write or do homework or read I just start ticcing more, start scratching more, and get really frustrated and end up having a meltdown. I just turned in an essay that I had to write over the weekend and I feel like the essay is just pure junk because I had such trouble writing it and getting my thoughts onto the paper. I usually am a good writer and take a lot of pride in my academic work which is why it upsets me so much that I am turning in an essay that I couldn't feel any less proud of. This is one of those times where I really hate having Tourette's. Most of the time I don't hate it. Most of the time I live with it and go on with my life and try to think about all the good things Tourette's has brought to me like my amazing camp twitch and shout family, my work in the Tourette's research lab, and my involvement in the TSA.

Right now though I'm just feeling down and like my brain is scrambled and like I can't think straight. It's hard to think straight when you feel like your entire body is filled with itching powder and like you just want to go and get a new body, a body that doesn't move and make noises and feel so uncomfortable like this one. A body that can handle the sensory stimuli of the outside world without shutting down and throwing a temper tantrum like a 5 year old. Guess trading in this body for a new one isn't going to happen, but at least I know i'm not the only one who has to deal with this. I have much love and support from the people around me who don't have Tourette's and much love and support from my camp twitch and shout family and others I know who do have Tourette's. In the mean time i'm using my strategies to try to calm my tics down like trying as much as I can to stay focused on other things, trying to keep my stress and frustration level down, and trying to get enough sleep, food, and water in my system. I also do some random things that I have found sometimes helps like laying under my weighted blanket, putting on comfy and loose clothes whenever possible, drinking milk to help me calm down, and putting cold compresses on my head.

Sunday, September 15, 2013

So much for a recovery from my sore throat

Just when I finally am starting to get over my cold, Tourette's decides to throw in a loud sqeaking vocal tic that's already starting to make my throat sore over again....gotta love Tourette's. So much for my short lived recovery from having a sore throat. This video made me feel a bit better though. It always helps to know i'm not alone. Times like this make me miss the environment of camp though for sure because there everyone understands what it's like and what I go though.  

Living with Tourette's Syndrome Short Documentary by Olivia Matlin:

Thursday, September 12, 2013

"Woof", "Um Woof" and "No!"

Hey everyone! So I haven't posted about this yet, but this has been something that has been going on for about a solid month now so I figured it's time to post about it! I wanted to make sure this was going to stick before I posted about it, but its pretty clear that it's sticking I go!

For the most part in the past, my only vocal tics have been sounds. Some of them were louder and some of them were quieter. In high school I had a few tics that consisted of multiple syllabus like one that sounded like "reh" and one that sounded like "wuh" but I've never really had word tics....until now. The two tics that seem to be taking center stage right now are vocal tics where I say "woof", "um woof", and "no". It's a very new experience for me having tics that are words, but i've gotten used to it pretty quickly and so have my friends!

When I say "woof" "um woof" and "no" as tics they sound distinctively different from when I am just normally talking so most people can usually tell that they are tics. They are usually said in a voice that is louder than my normal speaking tone and they sound very "tic-like". The "woof" and "um woof" tics are usually louder and more high pitched than my speaking tone and can sound playful or "sassy" and the "no" tic is also said in a louder and different tone than my normal speaking voice and I tend to turn my head down and to the right when doing that tic.

Life is going on and pushing forward as normal though even with these new tics! They have created some amusing situations and have elicited some interesting comments from my friends but everyone who spends time around me is getting very used to them pretty quickly.

Just the other day in fact, I was sitting with some of my close friends in the college dining hall and a girl who I had met briefly but who doesn't really know me very well yet asked if she could join us. I said sure because I am pretty much always up for meeting new people and making new friends! She sat down with us and it wasn't long before I started doing my "woof" tic. The girl who I didn't know too well asked if I was okay because she didn't know that I have Tourette's and I told her that yes I was okay and explained to her that I have Tourette's. When i'm explaining I have Tourette's I usually like to add in something personal at the end to let the person know that i'm okay with having Tourette's and it's not something that we need to be super serious about all the time. The more relaxed I am about Tourette's, the more relaxed that the people around me will be about it. So this time I ended with saying "Most of the time, my friends actually find it pretty amusing". My friend Sarah responded to this by saying "yeah....but not all the time". In a joking way I said back to her "Oh yeah? Well what is it the rest of the time then?". And to this she said "No! Haha I didn't mean it that way! I just meant that sometimes it's funny in certain situations when we see a dog or something and you're saying "woof" because it sounds like you're trying to communicate with the dog! But most of them time its just....its just....Normal."

It made me really happy to hear her say this because that's all I want most of the time. I just want my friends to be used to my tics and feel like they are just something that's normal. I want people to get used to my tics so they just blend into the background so that they aren't something that the people around me really pay attention to. I sometimes worry that my tics are annoying or are bothering my friends, so hearing Sarah say that they are just normal for her made me feel really good. Having my tics be "normal" for other people to hear, see, or to be around is really pretty much all I want most of the time in terms of my Tourette's. I do like it when people joke around with me about every now like when I do my "no" tic after someone has asked a question and one of my friends says "well she doesn't agree!" is a friendly joking kind of way or when one of my friends says "I wonder how I knew she was in here!" when they hear my tics from afar because it lets me know that they are comfortable with my tics and feel comfortable enough to joke around with me about them! But most of the time, I just want them to be something that no one really draws attention to that often because they are just something that's normal for me.

So long story short, i'm getting the best of both worlds right now! My friends just ignore my tics most of the time because  my they are normal for them to be around and then also know the right times to joke with me about them or to talk about Tourette's with me :)

Monday, September 9, 2013

Sophomore Year and Tourette's :)

Hey everyone! So I know I haven't written a blog post or really done an update on what's been going on with me for a few weeks now, so I figured it was time! 

This is my third week of classes as a sophomore in college and although I have been super busy with classes, friends, extra-curriculars, etc, it is for sure a good type of busy and I have been enjoying these first few weeks so much! 

Everything has been going really great for me. I'm enjoying all my classes, am loving my new living situation this year (since i'm living with my three closest friends in a 4 person suite in which we all get singles but share a common room and a bathroom and have more of my close friends living very close to me!), and even though my tics have been hyped up due to all the excitement and activity going on everyone around me has been super accepting and understanding as soon as I explain myself.

At camp twitch and shout I felt so comfortable and was able to just be myself. After camp, I was so upset that I had to leave that wonderful environment but I soon realized that I had the power to make my environment in college as close to the accepting and understanding environment of camp as possible even though i'm the only person with Tourette's that I know of in this environment.

So it took a lot of educating, and explaining, and showing my friends that if I was comfortable with my Tourette's, they could be too, but I have finally gotten to that point which I have pretty much been aiming to get to for a long long time though. I am at the point where everyone who is a part of my life at college is comfortable with my Tourette's, knows when to ignore the tics and when to laugh with me about them, is comfortable and able to chime in with their own comments when I feel like talking about Tourette's or need to get something off my chest about it.

My tourette's is something that is out there and that people know about, but at the same time it does not define me in college 

Wednesday, September 4, 2013

Disapproving Stares....

Today I was in the bathroom doing my typical OCD hand washing ritual where I wash my hands for the exact amount of time it takes me to sing the abc's and count to 23 in my head. The sink wasn't draining very efficiently and the soap bubbles were starting to get a bit high. The problem was, I couldn't stop washing my hands yet to turn off the faucet. A girl walked in while I was still washing my hands and while the soap bubbles were still high and stared at me first with a look of confusion and then gave me a look of utter disgust.

This is the stare I hate the most of all. It is even worse than when someone turns around to look at me when I tic. This is the look that happens when the person who has encountered me in a situation where my behavior differs from the norm has decided to judge me in a highly negative way and then chooses to let me know they have judged me.

I am not a horrible person and I am not crazy. I just have OCD and Tourette's. Please Please think before you give someone you don't know a look of disgust. You do not know the person, you have no idea what battles they are fighting, and you have no idea what they are going through.

That stare of disapproval today hurt a lot. I will no doubt feel that stare of a good while. It is so hard to let it go. I know I should let it go but I just hate when I am judged for something that I can't control, something that I did not choose, and something that I struggle with every day.