Why me?

Back in August, I was asked by a psychologist if I ever asked myself “why me?”. He made it sound like a bad thing and I don’t think about it much and when I do it doesn’t change my feelings towards my disease so I said “not really”. It didn’t bother me that he asked me this, as some of what he asks does, but it stuck in my mind. When I got home, I got hit all of a sudden with increased symptoms, mainly rage and anxiety in the pit of my stomach as well as increased sound sensitivity. I went up to my room to try and sleep it off but I couldn’t fall asleep so I did the next best thing for me, I went on a bike ride. Riding my bike generally can calm me down. I can be alone and it is quite and the exercise lets me get out my aggression. But it wasn’t helping. All of this got me thinking about the day. I woke up feeling alright and I couldn’t think of anything that would lead me to feel this bad. This thinking lead me to the appointment with the psychologist and I began thinking about his question, “Why me?”.

Every once in a while, I think of this question and a few others again. Why me? Why now? Could I have done something differently? I always land on the same answer. It was nothing I did or didn’t do now or before. There is no reason that I or any other PANDAS/PANS/Lyme kid got sick that we could have changed. If there is a reason, it is a bad immune system in our genes and that is not our fault.

Everyone tries to give fault to something or someone when something bad happens. They could blame their own wrong doings, blame another person as if they were a villain, they could blame god or the government or the world but no amount of blaming can automatically fix it. Even if there is something to blame, you can’t go back in time and change it. If there isn’t something to blame, you are just trying to put a face on evil and evil doesn’t have a face.

Accepting this and the problems you face is the hardest part. I spent years blaming myself. I never blamed my parents, who gave me my DNA, or the doctors, who triggered my immune system and have yet to get me fully better. I saw that it wasn’t their fault but I couldn’t see that it wasn’t mine. In the past 2 years, I have slowly figured it out but every once in awhile I will think, “What did I do to deserve this?”.

Searching for something to blame isn’t all bad. Because of it, I kept searching and researching for treatment and a cure. It has allowed me to get better at times. My doctors want to help but they don’t have all day to just research online for new ideas. I did and it greatly helped but if all you are doing is blaming yourself or something else and not using that blame productively, it is getting you nowhere. So blame with caution and know that it’s not bad to ask “Why me?” personally, I think it is healthy.

Brave

The word brave can be either an incredible compliment or a horrible reminder. To me, it’s a horrible reminder that I always have to be brave. It is meant as a compliment but more often comes out sounding like they think I can be braver and I should be better than I am just by sheer willpower, but that’s not how it works.

I have a lot of willpower and I am brave and I know it. If I wasn’t as strong as I am, I would not still be living. I know several people with PANDAS just as bad as mine that are not as strong as me and worry about them because of that.

You can’t have PANDAS or any long term disease without being brave and strong but there is only so much that strength can do. Strength can’t cure any disease even the ones that are supposedly all in your head. Strength helps but it isn’t the solution.

I can’t just force my immune system to work properly and not fight itself. I can’t push the lyme out of my body. I can’t choose to have sound not be deafening. If I could do any of these things, I would but I can’t.

Telling me I am brave or strong or telling me to stay strong isn’t helpful unless you actually understand how tough it is to be this brave and strong for this long. Tell me life sucks, tell me you don’t know, tell me anything that doesn’t give false hope that I know isn’t true or words that imply you know how I feel because you don’t.

Tell me the truth, it means that you are listening and understand how tough it is. Don’t give me sympathy because it is an empty gesture. If you can, give me empathy and know the difference between sympathy and empathy. Give me comfort but not some generic babble that means nothing. If you don’t know what to say, tell me, it means a lot more than saying something you got from a motivational speaker. If you don’t understand, ask me to explain.

Don’t say I am brave, I hear that enough from people who don’t understand. Don’t tell me to stay strong, I can only hold on so long. Don’t tell me it will get better, unless you are psychic. Don’t apologize for how life is, it is nobody’s fault. Speak from your heart and you should be fine. I can handle dark truths; I face them every day, it is worse when you try to paint a picture that will never be real. Stick to the truth and don’t hold me on a pedestal, I am brave because I have to be, not because I want to be. I am brave not by nature but by force. You would be brave to if you were me because there is no other choice.

Getting Mad

Every time I get the slightest bit annoyed with my family or something, they automatically assume my PANDAS is flaring up and I didn’t take my medicine. Why does PANDAS have to be the source of all my anger?

Sometimes people do things that make me upset, sometimes I do things that make others upset. Sometimes it is on purpose, sometimes it is accidental. Sometimes we show that we are upset, sometimes we bottle it up. Sometimes PANDAS is the source but don’t assume it is because sometimes it is not. Why is it that because sometimes I have disease that can make me upset, that is always why I am upset? If that is the case, why does the rest of the world without a disease like PANDAS get mad?

I get mad, you get mad, the whole world gets mad and that is okay. Once in a while, it is okay to let your anger out, as long as no one gets hurt. So why do I get blamed.

They blame me for not taking my medicine, which I have taken. They blame me for getting mad if it is PANDAS, thinking that I should be able to control it. They blame me for getting mad if it is not my PANDAS, basically saying I should never get mad.

I shouldn’t feel sorry for having emotions and needing to let them out once in a while because everybody does. You should be happy that it isn’t my PANDAS because that means I am getting better not worse. You should be happy that it is just typical getting anger and not something more complicated. I am not saying that you should be overjoyed by the fact that I am mad at you but understand that there is nothing more to it than that.

I’m back

Sorry I haven’t posted in a long time. It has been a really rough past couple of months but I am back, at least for a while.

I recently started Abilify. It has been helping quite a bit and I have only been on it for a month. The question in the back of my mind whenever I start improving is “how long will it last?”. I have tried many things to get better and every single one has eventually stopped working or made me worse. They may be able to be used again later but they always fail at one time or another.

The abilify has greatly reduced my tics, ocd, and anxiety. My sleep and sensory sensitivities remain the same. It caused increase in fatigue and mood swings towards the beginning but they have gone away with time. I have hope for this medication but I don’t think it will fix everything. Sometimes you just have to treat each symptom with its own medication.

To help me with some of my other symptoms, I have a PANDAS/Lyme recovery plan. It looks like this.

1. Continuing on Abilify, Augmentin, Amoxicillin, and supplements
2. Taking oxytocin
3. Getting Rife therapy
4. Getting LDA shots
5. Getting a tonsillectomy
6. Using ERP for lingering OCD and tics
7. Going to Neurocore to help regain my cognitive functioning.

Hopefully this all helps. If it doesn’t, I have some other options to explore, like IVIG.

I will post again soon.

Brain On Fire: My Month of Madness

“Brain On Fire: My Month of Madness” by Susannah Cahalan is an autobiography about a young woman, Susannah Cahalan, who had a mysterious illness. The book talks about her search for proper treatment as well as her recovery and regaining herself. I highly recommend it as reading for anyone who has or knows someone who has PANDAS, PANS, or Lyme.

I don’t want to give away too much information about the book and spoil it for you but I will say this, I found it very relatable. Susannah does an excellent job describing her experience and when she can’t speak about it herself because she doesn’t remember, she gathered all the information she could from doctors, nurses, family, and friends in order to tell the complete story. Their were many parts that explained exactly how I have felt, especially in Part Three: In search of lost time.

The following are some of the parts I found especially relatable. In chapter 39, Within Normal Limits, she discusses how her life revolved around her medications. She had limited independence which made her want to rebel by not taking her medications which caused friction between her and her family who were just trying to help her get better. I have done this in the past. When your life consists of taking medications multiple times a day, it gets tiresome, annoying, and frustrating for both the patient and the ones who care about them.

She also discusses, in chapter 39, that a doctor found it reassuring that she was able to identify and define what was wrong with her. She states ” Often those with neurological issues cannot readily identify what is the matter. They don’t have the self-awareness to understand that they are ill.” She says, “Paradoxically my ability to recognize my own weakness was a strength.” This stuck out to me. It made sense but it is an awful feeling. Knowing you were once able to do something such as write and now you are no longer able to.

In chapter 47, The Exorcist, she talks about how the medical system is flawed by forcing doctors to spend a limited amount of time with patients and diagnose them without getting the whole story. Many cases including PANDAS, PANS, Lyme, and Anti-NMDR require “time, patience, and individualized attention”. Not all cases fit the mold and doctors need to know that. On the other hand, if doctors spent hours with each patient, no one would ever get diagnosed and the simple cases may be turned into complex ones.

In chapter 48, Survivor’s Guilt, she asks, “Why me? Why did my antibodies decide to attack? Why was I able to then recover?”. She states that she didn’t ask these questions through self-pity but instead she really wanted to know the answer to why specific people, including herself, are affected by their body attacking itself while other people are perfectly fine. She then asks the big question, “Why does this happen to anyone?”

I related with all of these things in a different way. Even though the cause of our autoimmune encephalitis is different, many of our symptoms, feelings, and thoughts are the same especially throughout recovery. I find it amazing that I can connect with a story as much as I did with this one. I had never connected like that before to something I had read.

 

Relearning How To Feel

When your life is filled with bad feelings, sad feelings, hopeless feelings, anxious feelings, painful feelings, and uncomfortable feelings, you start to cut the connection between those feelings and you. In theory, cutting the connection to feeling is good. You feel less depressed, anxious, terrible, and hopeless but you also cut the good, the funny, the love, and the hope.

At my worst, I didn’t have any good feelings. They were all bad, so I cut the connection because there was no reason not to. That left me feeling empty which at the time was better than being filled with the bad feelings. As I gradually started getting better, I started letting more feelings in because they were good feelings. However, this also lets the bad feelings sneak in. Leaving me feeling worse than before, when I wouldn’t let any emotions or feelings in.

When you cut off feeling and start to bring it back, it is never the same. I still love my family and friends but it’s different. I am not as open with my affections. Hugging, no matter how much I want a hug or not, always feels awkward. It never used to.

I was also friendly to everyone. I saw strangers as innocent and never judged a book by its cover. Everyone was good at heart, until proven otherwise, and even then there was always hope for them to be a better person. I still feel this way but it seems forced, like I am forcing myself to be the person I was before because I don’t want to have lost her. All emotions feel forced, even the ones that are not as complicated and confusing. Love is complex and confusing. Why do we love? What makes us love certain people? What does love feel like? These questions don’t’ really have an answer. Other emotions are simple, like laughter. Laughter just happens when you find something funny whether it was meant to be or not. The way laughter feels, it is clear that it  is laughter, even if it looks, feels, or sounds different than when other people laugh. For me, laughing, even at a joke or something that I find funny, seems forced. It just doesn’t come naturally to me anymore. Maybe it is because I spent years without it? Maybe it is because I used to force it to fit in and not seem like I was as miserable and bad off as I was? Maybe it is because the wall between me and my feelings has not completely fallen down? Maybe it is because I want to be in control of my feelings because I don’t control much of anything else and they used to control me?

Slowly but surely, I have been getting better. Getting better allows me to do some of the things that I wanted to do when I was sick but was too sick to do them. This forces me to open up the doors I shut so long ago between me and my ability to feel. Because the door was shut for so long, I have to relearn how to feel. It is like physical therapy for the mind.

Feeling is kind of pre-programmed into our brain since we are born. We already know how to feel we just add to that along the way through learning. Relearning how to feel, however, is a very difficult and long process especially since I have had to start over several times. I am not even quite sure how to relearn how to feel or if I will ever be able to feel things the way I once did. All I know is that it is very complicated and something you must learn along the way because there isn’t a guideline or set of steps that will help me relearn. I just hope that it will come back to me over time because feeling is something all of us need in order to survive.

Without the bad feelings, how would we appreciate the good. But when the bad feelings make it impossible to survive, shutting them down is the only option and overtime, reopening them, is the only option. When you open that door, be prepared to have all the feelings that were locked in flood through you, and know that there is a long road ahead until it feels natural.

“I Don’t Want to Be Crazy”

In the past year or so, I have been very interested in reading about and connecting with other people who have PANDAS, PANS, Lyme, or something similar. I started my reading with a book called, “I don’t want to be crazy”. It is about a girl starting college who starts to develop panic attacks.

In the book, the cause of the panic attacks is not PANDAS, PANS, Lyme, or something similar but I wanted to read it because it was about having a mental disorder and getting comfortable with and coping with that fact.

The author writes about her experience and it is an autobiography. I was also curious as to what one goes through when their mental illness is not due to PANS, PANDAS, or Lyme.

Even though the cause of her issues were different from my own and panic attacks were never one of my symptoms, I found the book very relatable when it came to dealing and coping with the mental aspect of illness. The way she felt different, alone, scared, worthless and uncomfortable with herself and the panic attacks was similar to how I have felt over the years. She felt like she had no control and wanted to find a reason or cause for the panic attacks.

I found it was a good read for teens with PANDAS, PANS, or Lyme. The title really captures the theme of the book. No one wants to be “crazy” and when you have an illness whether it is mental, physical, or both, you have to find a way to be comfortable with it and yourself for having it. You have to know that it is not your fault and it is not a consequence to something you did. Illness happens. You have to find a way to accept it in order to recover from it.

Here is the link to the authors website with the book. http://samanthaschutz.net/site/?cat=3

All I Have Lost

Two weeks ago, I went to my best friend’s school performance of Hairspray. It was an amazing show filled with laughs and joy but in the middle of it, I almost cried. Not because the story was touching but because I realized what I had lost and what I had had before P.A.N.D.A.S.

Two years ago, I was doing okay and I wanted to take electives at the school again. I took acting and movement classes and I auditioned for the shows and got into both. I was as happy as I could be being a girl filled compulsions and anxiety. That March, my sleep fell away and I had little memory and  concentration so I had to drop my electives at the school. That one tiny thing that brought me a shred of joy and normality was gone. I spent all day and night at home, usually alone, sleeping at different times each day.

In less than a week, I went from a girl performing in a school musical to a girl who never left the house.

It was hard and painful watching my life get taken from me but at the moment, I was so impaired that I didn’t really care. Looking back, it feels much worse.

Without P.A.N.D.A.S. and Lyme, I would probably still be taking electives at the school and participating in the plays and musicals. I would be in some kind of sport either gymnastics, volleyball, or soccer. I would probably be taking college classes and finishing up my high school classes. I would probably have a boyfriend and hang out with my friends more than once every two or so months. I would still celebrate my birthday and holidays. I would still play piano, bass, and sing. I would go to all my friends and siblings performances and shows. Most importantly, I would probably be happy.

None of those things would for sure be a part of my life without PANDAS and Lyme, but based on who I was before and what I did, those things are pretty likely.

Since age 11, when I struggled with PANDAS, I have quit sports, piano, and bass. I don’t do as much school and have had 2 full years of little to no school. I barely go out and rarely see friends. I have stopped celebrating my birthday because I don’t want time to be passing while I stand still. I miss most of my sisters’ and friends’ performances. I have tried going to school full time in order to feel normal but it always ends up failing. I have done some of these things, here and there throughout the past 5 years but not nearly as much as I would like or even need.

The worst thing though, that PANDAS has ever taken away, seems very insignificant to the outside observer: Camp.

I started going to a 2 week, sleep away, fine arts summer camp when I was 10. It is and was one of my favorite places on earth. I loved the fresh air, the music in the background, the beautiful forest, even the cafeteria food. It is my happy place. I had gone 2 summers before I got PANDAS. The summer when I was 12, I had gotten an IVIg 6 weeks before the first day of camp. I was still really impaired by the time camp came around but I really wanted to go, so I did. My sleep was better but all my other symptoms were worse as the IVIg was flushing it out of my system. In the 2 weeks of camp, I almost fully recovered. I was able to enjoy camp the way I had before PANDAS and I was able to play the piano, which is what I went to camp to do, even though I hadn’t even touched the piano or read music in months.

Every year since, no matter what shape I was in, I have always gone to camp. I have always been able to perform, or make art, or do whatever I went there to do. Some years it was harder than others, and some years I didn’t get to participate in the hour and a half of free time because I needed that whole time just to shower. But every year, I still went. Last summer, PANDAS took that away too.

I had gotten an IVIg the summer before, after camp, but it didn’t work. By the following summer my sleep was so bad and unpredictable that I knew I was not going to be up in order to complete the daily tasks, My OCD was also so bad that it took me several hours just to go to the bathroom. I knew in my heart that camp was out of the question but it was still the toughest decision to make. Not going to camp meant that PANDAS had taken the last thing that I held dear. What made me me was gone and what remained was a cavern that the OCD and all my other symptoms filled.

Coming back from this will be much harder, take much longer, and be much more painful. In the end, I don’t think I will regain all that I have lost but I am hoping, I will regain myself.

Miracle Cocktail

I have recently started to receive Myers’ Cocktail infusions and they are amazing. Myers’ Cocktail infusions are a vitamin and nutrient mixture with vitamin C, magnesium, calcium, and various vitamin Bs. It is supposed to boost your immunity and overall health and boy, does it work.

I started getting them on the November 4th and have had 2 since. Shortly after the 1st one, I got sick. It was a sore throat that turned into a head cold. I got sick Saturday night, got a Myers’ Cocktail Tuesday and Thursday and was completely better by the following Saturday.

My grandparents took me to get the infusions, my grandpa on Tuesday and grandma on Thursday. Both said that I got noticeably better during the infusions. The phlebotomist at the doctor’s said that I didn’t even look like the same person from Tuesday to Thursday.

It was amazing how effective vitamins and nutrients are in boosting your immune system the proper way. This is why I call it miraculous because it is.

I am almost glad that I got sick because it showed me how helpful Myers’ Cocktails can be. They won’t help as fast with my PANDAS and Lyme symptoms but I am very hopeful that they will help me get better overtime.

Getting Sick

At the first sign of sickness, I freak out. Whether I have a sore throat or someone around me coughs, my body immediately goes from this is an okay day to HOW COULD THIS BE HAPPENING? When you get sick you think, “Ugh, I will crappy for a couple of days but then I will feel better”. When I get sick I think, “This is the beginning of the the end. I will feel worse then crappy because when I wasn’t sick I felt like crap and then I will go into a downward spiral of worsened symptoms until I can’t take it anymore.”

Once the denial and anger go away, I do everything to get better faster and not fall down the rabbit hole. I load up on supplements, emergen-C, and elderberry syrup. I take Tylenol and ibuprofen. I alert my doctor and switch to the proper antibiotic for whatever I have, mere minutes after the first symptom.

Once I have taken every precaution and medication in the book, I begin to think. How is it even possible to get strep while on augmentin or an antibiotic? Could I get a break?

No matter how bad I feel or tired I am, I cannot sleep. Sleep is the number one treatment for getting better but god forbid I actually be able to get some sleep, let alone restorative sleep.

I can barely do anything when I am “well’ so when I am sick it is nearly impossbile. Just taking my medicine, eating, drinking, and going to the bathroom is a long, tedious process when I am at my “best” so how am I supposed to do any of these when I can’t swallow because my throat is so swollen or I can barely keep my eyes open or breathe.

All I can hope is maybe, just maybe, I will come out of this at the same or better level of wellness.