Brave

I am 18 years old, struggling with this disease that has taken over my entire life. And I try to be as positive as I can be, but some days it is hard. Like today, for example. I feel overcome with anxiety and OCD and depression. Most of all, I feel scared – the opposite of brave. 

I am scared of this disease.

I am scared I will never overcome it. 

I am scared I won’t ever go to school or get a job again. 

I am scared of every ache and pain I get.

I am scared every time I tick. 

I am scared of leaving the house. 

I am scared of losing this battle. 

I am scared of what comes after winning it. 

I am scared of dying. 

I am so scared I want to give up but I am also scared of what happens if I do. 

I don’t feel brave or strong. 
I feel scared and weak. 
I am tired. I am sick. I am angry. I am sad.

 But I realized, just because I’m scared doesn’t mean I’m not brave. And just because I feel weak doesn’t mean I’m not strong. 

So to every child, teen, and adult who has this disease, and to every parent whose child has it, we might all be scared. But we are still brave. 

“I have seen nearly every city from a rooftop

without jumping.

I have realized that the moon

did not have to be full for us to love it,

that we are not tragedies

stranded here beneath it”

 ~ We Were Emergencies by Buddy Wakefield 

  

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What OCD is really like

Countless times I have heard the lines, “Ugh I am so OCD.” Or “Sorry, I am just really OCD.” First and foremost, OCD stands for obsessive compulsive disorder. It is a disorder, not an adjective. Secondly, you cannot self-diagnose because these pictures annoys you. 

   
 
Those pictures would annoy most people. That doesn’t mean you have OCD. While some symptoms of OCD do include things like cleaning and organizing, things like counting and then recounting or checking the doors, windows, the stove, and all the switches in your house are also symptoms. But even that is just one side of OCD. Being germaphobic and agoraphobic are two common symptoms. And hating germs doesn’t mean you have OCD, because let’s be real, who wants to get sick? Washing your hands doesn’t diagnose you, but washing repeatedly or avoiding situations altogether because you could could get something is a sure sign you might have OCD. 

Some of my obsessions include – agoraphobia, hypochondria, fear of allergies, fear of taking medicines (because it may cause a reaction) – some of my compulsions include – avoiding crowds and public places at all costs, refusal to eat and take meds, constant picking (nails, nail polish, glue, skin, etc), washing my bed sheets, pillows, and comforter way too often. These are just some of them. My anxiety is through the roof at almost all times. I need constant reassurance about things, I Google everything, but I cannot push these thoughts and obsessions out if my head. 

So to every child, parent, or teen out there that says “I’m so OCD” when they see one blue sprinkle in a mix of red ones, think about what you are actually saying. OCD is a life consuming and terrifying illness that should not be talked about so lightly or ignorantly. 

(OCD: Obsessive-compulsive disorder is characterized by unreasonable thoughts and fears (obsessions) that lead to compulsive behaviors.)

Tourettes 

My entire PANDAS journey started when I was about 11, although I didn’t get diagnosed until I was 16. Tics were the first thing we noticed. It started with eye blinking which I wasn’t aware I was even doing. I started to develop throat clearing and my mom mentioned it to our pediatrician who said, “Probably a transient tic, don’t worry about it.” It continued on and turned into a full blown cough. By then, I was fully aware I was doing it. It wasn’t too debilitating through middle school or my Freshman Year. But by Sophomore year (when my anxiety and depression set in) the coughing fit louder and more frequent and was accompanied by a head toss. That’s around when I got diagnosed with Tourettes. Currently, I have the cough, I sniff, and twitch. The twitch is something strangers, peers at school, and people at work would so kindly point out to me with, “Oh my God you look like you’re having a seizure, what’s wrong with you?” I’ve had s few other tics that come and go: gagging, humming sounds, grunting, and playing with spit in my mouth. The cough and twitch have been the two constants. And since my illness has been worse, so have the tics. 

Growing up with Tourettes has been extremely difficult. People constantly staring in public, people at school saying “Can you stop coughing?” Or “stop sniffing and just go blow your nose”. Oh thanks, that is sure to help me. And the, “Just try to breathe and calm down.” Because I haven’t given that one a try yet. (a little hostile, I know, just because I’m frustrated by this!)

I understand that some people aren’t aware of what is is but that doesn’t give anyone an excuse to make fun of it. Most younger kids aren’t aware of what it is, most teens only think that Tourettes is shouting and swearing and for some reason that has proved to be hilarious to them. What shocks me, is being out in public and seeing an adult, staring at me like I am an alien when I twitch. People look at me with disgust when I cough as if I am passing some illness to them. And all I want to do is scream to them that I can’t help it. 

I can only imagine this how most kids with PANDAS an Tourettes feel too. It’s like having an itch that will not go away until you scratch it. And even if you try to stop yourself from doing it, it’s all you’ll think about until you do. I can remember sitting in class at school and 45 minutes later I would think, “Wow I barely ticked that entire class. I held it all in. But I didn’t retain anything we just learned, I have no idea what we talked about, and I feel like I am gonna explode.” And that was on a good day where I could try to hold it back. 

Having Tourettes made me feel stressed, depressed, and alone. It’s gotten worse for me, but I am comfortable with myself and my illness. I am grateful to have a diagnosis and doctors, family, and friends who understand and accept my illnesses. To all parents who have a ticking PANDAS kid, I hope this helped you. I know some of you have young kids who can’t exactly explain how they feel. Just know that pointing it out and telling us to stop hurts and makes us feel bad (though I can’t speak for all). Because as much as we want to stop and just turn it off, we can’t. And it annoys us just as much if not MORE than it annoys you. 

Staying Positive! 

I wanted to write this not just for the parents but for the kids too! I know some of the parents reading this don’t give all the information they take in to their kids and that is totally okay! But if you want to share this with your children who are suffering, feel free. 

For the Parents:

I don’t tell my Mom enough how grateful I am for everything she does to help me get better. And I know some of your kids are so young they don’t really know better. But you are all amazing parents for everything you do. All the time and money and effort you invest in your child’s well being deserves to be noticed. Staying strong must be awfully hard for a parent of a PANDAS kid. You try so hard to fix your kid and you feel so helpless when you don’t see improvements. That has got to be a downer everytime. You hear of this new treatment that people have said work for them and then you give it a try and your child is just as sick as they always were. You feel so defeated. But let me tell you, as children we feed off your positivity. I’m not sure if this applies to me anymore, since I am 18 so I am much more in the know about my illness then some of the younger kids suffering are. But I can promise you that your child sees your positivity and thrives off of it. Keep doing what you’re doing, parents! Even if your kids can’t pick up on what an amazing job your doing, I sure can. And you’re all kicking butt! 

For the Kids:

Being sick is so no fun. And sometimes your brain is telling you to do things like twitch or cough or sniff when you don’t need to. And it’s hard to understand. How can you tell people what you’re feeling and thinking wen you don’t even know how to describe it? Your mom and dad are doing everything they can to help you. And I just want to tell you it’s okay to feel bad. I know some days you feel worse than others. And something that didn’t bother you yesterday, bothers you today. But just believe that one day you will be healthy again! You and your family will keep fighting and being strong and one day you’ll be okay. 

Stay positive! I know it’s hard and sometimes everything is going wrong and you can’t see how it’ll ever get better. But together, we can fight and defeat PANDAS/PANS/PITAND. Thoughts and prayers out to anyone and everyone suffering! 

Faith

One thing I am so grateful for is my faith. During these types of situations people can either grow closer to God or leave him. I 100% understand the feeling of abandonment you feel when none of your prayers are being answered. And even though I have had my share of angry and brutally honest prayers, I haven’t lost my faith. I truly believe the only reason I ask still here today is because of my faith. Because I trust in God and trust that no matter what, he is going to take care me. Millions of people have illnesses that go undiagnosed and I am so lucky to have doctors, family, and friends that are helping me through this time. 

I believe that a truly angry and honest prayer is sometimes what you need. And even though I get angry and can’t understand why this happened to me or anyone else that’s going through this, I know there’s something beyond me that I can’t see. 

March 17th 2014, my Aunt passed away. She helped my parents raise me along with my other Aunt. Losing her was hands down the biggest loss I experienced and the hardest thing I ever had to face. But sometimes, when I am totally lost and feel so alone, she pops into my head. Whether it be through a song, a sunset, a garden, she is all around me. I truly believe she is watching over me everyday and that even though God took her from here, she is watching over all of her family from up there. 

God works in mysterious ways. Little things, like on my birthday when I was really missing my Auntie Mary, I put on her song “Lasso the Moon” and the clouds dissapeared and the sun came out. I knew she was there with me even though I couldn’t see her. About a month after she passed I had a dream about her. She was leaving our house and I was begginging her to stay and crying. She kept saying “I have to go.” And then she left. I woke up in a panic, crying. However, a couple months later, I had another dream. She called me and asked me how I was. Then she proceeded to tell me how amazing and happy she was. She was laughing with me and telling me that she was doing so well. I believe she came to me to tell me she was okay and that I shouldn’t worry for her. 

Even though I am still so saddened by the loss of my Auntie Mary everyday, I know she is watching over me and my family and she loves us so much. And even though it’s hard to see why God does things like this, we have to keep our faith strong. Because in the end, he makes sure we are safe and happy. So to anyone who feels like they are losing their faith, try to hold on to it. Everything feels hopeless, but I feel myself filled with the Holy Spirit through every prayer, every Eucharist, every miracle, every beautiful thing I see. And I am so grateful. 

4 Months Post-IVIG

Around April, which was 4 months post IVIG, we were losing hope. I was getting worse. Much worse. Not only had Tourette’s taken over me, but my anxiety was so debilitating that I was missing a lot more school. My second semester consisted of two classes at school and four classes online. I was down to only making it in for one class, and that was only when I had enough energy to climb out of bed and go. Eventually I stopped going completely. I was doing the two classes from home as best as I could, and trying to keep up with my online classes. 

I believe it was April 10th. I had a haircut and then ran some errands with my mom. We grabbed some a TBell for me since I had to go to work straight after. I walked in and was there for about 10 minute when they anxiety kicked in. I started having a full blown panic attack. Too nervous to tell my manager, I went to the bathroom to try to calm down. However, my ticing was out of control. My anxiety was through the roof, and I couldn’t stop the crying. I told my manager I got sick and had to leave. I raced home to the comfort of my bedroom and caught my breath. From that day on, something in me had changed. I was unable to go out in public. Although a doctor never said it, I basically developed agoraphobia. I had always had issues with big crowds but now it was too the point that I didn’t want to go anywhere. School, work, the mall, the grocery store. All of it sent me into a full panic attack and a heavy bout of ticing. To avoid that, I avoided going out all together. I stopped eating at the table with my family and started taking the food to my room. I started refusing my medicine for fear I was allergic to it. My insomnia increased to the point that I wasn’t falling asleep until about 7 am. I could no longer sleep in my bed. I couldn’t be anywhere other than my room for too long. 

In the mean time we started seeing an integrative doctor who ordered about 24 blood tests, a urine test, and a saliva test. From that, we discovered I had low cortisol levels in the morning and high levels at night. I had an under active thyroid, high iron, and another test that indicated two things. Either I had mold toxicity or I had lymes. 

My mom tested our house for mold but it came back negative for any harmful mold. We had always wondered if I had lymes. In 4th grade I had a tick bite but I was put on antibiotics as soon as we found the tick. I have all the symptoms of lymes – joint pain, muscle acges, fatigue, headaches, and insomnia. My leg has the strange marks that indicate Bart’s. I have tested positive for myco which is a common co infection of lymes. I still need the Wester Blot to confirm but we are pretty positive I have lymes. 

I am on doxycycline and azithromycin. I take supplements – magnesium, vitamin B, C, and D, L-theanine, 5HTP, zinc, and probiotics. I also take prescription cortisol and thyroid medicine. I have made diet changes – no MSG, no aspartame, low sugar, no artificial flavor or colors, and no fast food. I have managed to start falling asleep around 2 rather than 7. 

Unfortunatley, the tics are the worst they have ever been. The anxiety is through the roof. I still have aversions to medicines and foods for fear I am allergic. I still can’t go anywhere without having a panic attack. I am at a personal all time low as it’s taking a huge toll on me and my family. 

PANDAS Diagnosis and IVIG

My parents and I drove down for our cobsultation, where I would learn about something that would change my view on mental illness forever. My doctor told us about PANDAS/PANS. He was pretty sure I had it but wanted to do some blood tests. So back home, we went to the doctor to get my blood taken. While I was free of strep, I did test positive for mycoplasma. This pretty much confirmed that I had the illness. The suggested treatment was about two weeks of Augmentin, followed by a steroid burst. When that didn’t work, he advised IVIG(intravenous immunoglobulin). This terrified me to no end, but if there was a chance at it curing me, I was willing to try. The main issue was that I was a 17 year old girl who had been showing symptoms since I was 11. Most kids responded well to IVIG, but that was the problem. Most kids. I was past the age of puberty and I was almost an adult. This meant I had a smaller chance of responding to treatment. However, we decided to go through with it. 

On December 11th and 12th, 2014, at age 17, we went to the surgical center to get IVIG. My anxiety was high but my parents tried to make me as comfortable as possible. We got to the surgical center around 6:30 in the morning, I was exhausted having only slept about an hour the night before. After signing some papers, I was in the hospital bed. My nurse took my vitals and hooked me up to the IV – thankfully needles are one of the few things imm not afraid of – and started me off with fluids. And man, those felt fantastic. I even told my mom, “Why would anyone want to do drugs when they could have fluids?” they gave me about 250 mLs of it and also gave me some Benadryl, on the off chance I have a reaction to to the IG. Then began the IG. Thee started slow and gradually increased how much I recieved per hour. All in all, giving me the immunoglobulin took about 6 hours. The nurse was amazingly helpful and sweet. She made sure I was comfortable and okay. She checked my vitals every 30 minutes or so. Everything was fine, only my heart rate was way high, though that’s normal for the life of anyone with anxiety. I had a small panic attack at one point, but I was okay. 

After they 6 hours of pure boredome, they gave me more fluids and sent me on my way which was back to our hotel. I had a bit of a headache but I had taken some ibuprofen before so it wasn’t too bad. I tried eating some noddles and was a little nauseas so I didn’t eat much. We relaxed in the hotel since we had another day of it tomorrow. 

The next day was easier in my opinion, because I knew what to expect. However, it was just as boring. The child in the room next to me slept the entire time, but I was on high alert and couldn’t fall asleep. Once we finished, we headed back home. The two days following IVIG my mom couldn’t help but notice I seemed to be doing pretty good. After that, I fell right back into my old habits. The doctor told us seeing ups and downs was a good thing. Uqnfortunatley, I only had about one up in Febuary and everything else was pretty much consistently bad. We kept up with the doctors instructions, I kept up with the medicine he had me on and continued seeing my psychiatrist. But I wasn’t getting any better.