Emotional Floods

Long Week
I love the holidays and I love getting to see everyone at Christmas, friends come home from school and I get to see some family.
Always great.
Except when Im worn out. Which happens. A lot. On top of being worn out, I have managed to have the sniffles and a sore throat all week. Which further depletes my limited energy.
When im worn out I loose all hope of enjoying whatever it was that I had planned. I get caught up in my head and I drown in my thoughts. My thoughts just spin like a whirlpool. That usually ends in my emotions getting the best of me and me spending my night with some tears on my pillow.
Tonight has been one of those nights.
Last night my best friend spent the night with me and it was SO SO nice having him back. I didnt have to sleep alone and I had someone fun around to keep my spirits up. I didnt feel so lonely even though I was terribly drained and didnt feel like doing anything but laying down. He helped me with my car, having him help was amazing. We did in a few hours what would take me at least a week to do. One stress off my plate and it was fun having an assistant.

But in the end I was an emotional mess. When it was closer for him to leave I started crying and pouring out emotions. He was there for me the best he could, part of it was that I missed him and part of it was I was disappointed that we didnt do more fun things because I felt crumby (to say it mildly). I love it when he spends the night and we stay up half the night watching movies and playing games, this visit was a bit more on the mild side and I was spacey for most of it.
After he left I walked back into the house and cried again. It was just too many emotions for my tired body.
Christmas and christmas eve were similar. Had lots of fun doing things with friends and family but at the same time I wanted to be at home in bed crying. I wanted to be enjoying the traditional games at my friends house, but I just couldn't get into it.
Then I get upset for not being able to enjoy things. I want too so bad. Its just so frustrating that I always feel like Im looking through a snow globe at the outside world. I want to jump in and join and be a part of the fun and games.
Not sit on the sidelines staring off into space.

E has been great talking to this week. He called me the evening of Christmas day and we talked for over two hours. Because I was laying in my bed, in my quiet safe place, it was easy. I didnt enjoy it like a normal person would but its okay because he has the same feelings I do. The things he enjoys, really isn't the same. Things are more...pleasant or nice...not exciting or joyful, sometimes its better to be doing an activity than twiddling our thumbs in the corner, even if we dont really feel the effects of it.
When im in my safe place like that though, I feel more at ease and its easier to get enjoyment out of things.

Im planning on going to church tomorrow, ive gotten really really bad at actually going to church anymore. Its a push to even do that. My best friend will be there, and another good friend whom I love needs a ride to church so I am picking him up beforehand , its good for me. I just wish I had the energy and stamina to enjoy it. and the brain to remember whatever the pastor speaks on.

It amazes me how one week I can be doing 85-95% normal and the next week feel like im dying. I wish some of these new supplements would kick in a little more. but the dr told me it could take 6 weeks or so...(i think. idk i can't remember)

Guest Post from E- It Took Everything from Me

It took everything from me

“What is happening to me?” I wondered, as I stood in the shower. 
I was cold, quite dizzy and generally didn’t feel good. After a day at work, the hot shower warmed me up nicely. 
I drove to my church, where I was scheduled to spend the evening. I didn’t feel like eating anything, so I just got some tea. As the evening progressed, I felt worse and worse, and got so cold that I was shaking and shivering....with a coat on.

Finally, I had enough and went outside to my car, turned the heater on high and cried myself to sleep. Eventually a friend came out and found me, and drove me home.
This was the first time anything like that had happened to me, and I really didn’t know what to think of it. Over the next few months, I began to get more and more tired, until the point that I am now continually exhausted, and sometimes can only collapse in bed. I have agonizing pain, and have developed an intermittent stu-stutter, along with other cognitive difficulties. Conversations in groups have become increasingly difficult, and any productive school work at times seems nearly impossible. I have started falling regularly, and I am at times unable to control my balance well.

Though I never had many friendships before, the ones I did have seemed to die as I have become unable to do the things I used to do. But none of these are as bad as the ever present, crushing depression. I wake up every day, cussing that I woke up and that it is once again time to try to get up and move. I feel like I have been hit by a freight train.

A few years after I first got sick, I was diagnosed with Master’s (essentially lyme) disease. That at least explains what has been going on. But knowing hasn’t made things easier in general. When I, in passing conversation, mention to someone that I have Lyme disease, the general response is “okay.” There’s no concern on their face, no understanding in their mind, and no care in their soul. People, in general, just don’t care. However there are a few people that care about me, and for those I am incredibly grateful; it means more to me than they know.

This disease has taken everything from me. It took all of my energy. It took my ability to even have enjoyment. It took my emotions. It took my memory and my capability to think clearly. It even took my ability to have moving prayer time or serious devotions. It took me....and left me for dead, as a skeleton of my former self. A self that my friends, family and acquaintances don’t know, a self that I don’t know; a self that almost no-one knows. It took my youthful inspiration and replaced it with a wish for the sweet release of death every single day.

Even with the impressive amount that the bacteria has been able to accomplish, it hasn’t taken God from me, or me from Him. Nothing can separate those in Christ from his love for us. And I know that, and I firmly believe that. Nothing has escaped His attention, and I know that this immense suffering is for my good. It is helping me become the man God wants me to be; it may feel most of the time like a dagger in my heart, but I know that when I get better, if I get better, I’m going to be unstoppable. I’m going to be infinitely more compassionate towards those with depression, mental and physical disabilities, the hurting, the outcast, the unwanted and the untouchables of society. I’ll have a much greater understanding of what these people go through, and perhaps be able to help them. And for that I’m thankful.

-E

I asked E to write a post about his story for me to share on my blog, and I am impressed at how well he captured what he is going through. His brain fog and focus issues are a fair bit worse than mine (or so I think), and mine are fairly severe. For him to write this much and do such a coherent and clear job at writing, im super proud. 
One of the things he asked me after we began talking was "how do you describe what lyme has done to you"
I responded back with " I feel like I was murdered, then I never left my body."
Its fairly safe to say we both feel very dark now, which I for sure never felt like before lyme. Its hard to fight the crushing depression that has come on with lyme, the lyme takes over the body and the depression on top of it helps take over the brain and its thoughts. Together the two of us have more support to encourage the other through the dark times, which are more often than either of us would like to admit to anyone else.
Im sure that this will not be the last post from my friend that you will see posted on this blog, as he progresses with his treatment and his life and symptoms change im sure Ill be able to convince him to write a little more to share!
He started zithromax today, so I have a feeling he's not going to be feeling to great over the next few days. 

A New Blessing

Something New I am Grateful for

This week I am going to (sorta) lean away from the lyme aspect of my life. I mean this loosely because lyme ties into this, but maybe in a more positive than typical way. 

My best friend introduced me to a hall mate from his school, who also has lyme. This guy is only a little bit younger than I am, he's been sick for 2-3 years. Only recently diagnosed though, just found out in August. He's found an LLMD within a few hours from him (thankfully!) who is now treating him with antibiotics. 

This guy though, he's still new to the lyme front. He's done some research and he's learned a lot about the trickiness of the whole disease, that it may not be as simple as a few months of meds. Plus he's learned about the whole controversy behind it, so he's done a great job educating himself on the Ins and Outs of lyme disease. Which is great considering his brain fog and except for his doctor, he's flying solo here. He doesn't have much of a support system. 

Well, My friend gave me the guys number and we ended up talking on the phone for..oh..about 3 hours and 45 minutes give or take. Which for me is a LONG time to talk on the phone. A long time. Im usually a 30 seconds or less type of person when it comes to talking on the phone. But we had a whole lot to talk about! It turns out me and him have very similar lyme symptoms and very similar upbringing, we also think very similar and have a similar outlook on the whole disease fighting deal.

I feel special for being one of this guys (lets call him E for now) first people to talk to about lyme. Its been fantastic for me also, ive met a ton of people with lyme over the years between my own work and going to the clinic, but this is the first person whose around my age. He's also the first GUY, usually I meet girls who are sick. Usually guys bottle everything up and aren't much for being friendly with other people, just from what ive noticed.

Me and E have really hit it off. Him and I have yet to stop texting for more than a few hours at a time, we have FaceTimed for hours on several occasions. 

We go back and forth talking about some fun stuff, like work, cars, school(well almost fun lol) or talking about lyme things. We will text each other and ask a question like-hey do you ever get depressed out of nowhere? or-Do you ever go from having plenty of physical strength for work then all of the sudden have none to work with?

Its been nice to see a little more into how lyme has affected us and what isn't normal. January 26 next month is my 8 year anniversary of being sick, at this point I remember very very little of what normal feels like. Its been nice to have someone to compare to who has been sick for a shorter amount of time.

E went from having plenty of energy and being a full work horse, started working at 14 years old, long hours outside! To being able to do a small tiny fraction of what he used to be able to do, at a much much less intense level. He has even fallen asleep at the steering wheel and has had all sorts of scary things happen to him that were not at all his normal pre-lyme. 

I had him write a post for me to post on this blog, which he has done and it will be my next post after this one. I really wanted him to share his story and begin finding his voice. I know it took me a long time to be able to find my voice for what I was going through, I knew I was tired but it wasn't so easy to explain or understand. Now I can.

On our first phone call, one of the things we talked about was the fatigue. It was nice to talk to someone who knew what bone crushing fatigue meant, fatigue that starts at the skin and permeates through the muscle and bone all the way through. We joke about all of the other people who whine about "being tired" that we hear at school, and we both laugh about. They just think they are tired, or they should try a little more sleep and a little less alcohol (more so the case at my school than his). I know I feel less alone now when I feel like the fatigue and other symptoms set in now that I have a friend my age who gets it.

We both talk about how we hate that the other is sick and that we both have this journey to battle through, but that its so nice to have the other now. 

I shared more about myself and my illness with him on our first phone call than I have with anyone else right off the bat. Usually I only share little bits of personal information and I focus more on the other person, but we both just right off were fairly comfortable with the other. I even shared this blog with him, I have NEVER shared this blog with anyone so fast. To date, counting E, I have shared my blog with three people in total. This is one of my safe places, to keep it safe for me to share and reach out to other people with lyme (looking at you Rebecca :), I have to filter who I share this with in my life. I dont want to be judged for what I write, I dont want to be critiqued by my 3rd grade writing level, and I dont want to be gossiped about behind my back. I write a lot of RAW material about myself on this blog, which is beneficial for others going through a similar battle. I know I have an astounding appreciation for people like Yolanda Hadid who put her entire life in a book about her lyme battle, to which she faced a lot of judgment and ridicule, but in turn lifted people like me up in encouragement. 

I was put on this earth for a reason and it has been made clear to me that at this moment Lyme is part of my life, lyme itself isn't so big anymore so much as reversing the damage left by the little bugs. But I have accrued an amazing amount of research and knowledge  over the years from all of the books ive read and people ive spoken to, I feel wrong for not at least giving a shot to helping someone else out.

My best friend has never even seen my blog, and its probably the only secret he doesn't know about me. I did share to him its existence a while back but I didnt give him a link or the name, he just knows I write one somewhere on the internet. I share a lot online to the people in the lyme community who care to read, but in person I am actually very private except for a very very small select few people who I feel safe sharing with. 

So meeting a nice fella like E who is fighting the fight like I am and holding his self together with prayers and pill bottles, I can only thank God for placing this person in my life. 

We have yet to meet in person but its going to happen in the next few months one way or another, since he goes to the same school as my best friend I will now have two amazing people to visit every few months over in Missouri. We *almost* managed to pull off a visit at this end of this month, a very short one, but it didnt work out. Its gonna happen though.

Him and I have spent a lot of time relating over the rather messy aspects of being chronically sick, such as how friends disappear and family doesn't appear to care, or the emotions we dont share with just anyone, or some of the other darker scarrier parts of the whole deal, but we also encourage each other. Its easier to encourage someone when you deeply to the core understand the rough waves they are going through, I know for me its encouraging just to share the frustrating parts of being sick and having someone else get it or tell me they understand because they have gone through the exact same thing. Lyme isn't a disease that comes with much encouragement, its not as simple as going on the internet and finding all sorts of positivity as it is with some diseases such as cancer ( not bashing cancer patients at all, but there are many more cancer foundations etc. to help out and encourage them). So him and I both have an appreciation for the other for what we go through.

Our lyme symptoms are fairly similar, which is not necessarily super common with lyme because it can cause SO MANY different symptoms. The only major differences for us are-he can sleep at night and take naps during the day and he doesn't get panic or anxiety attacks, he has to take naps some days (especially work days) because he gets flat out worn out. Whereas its rare that I actually take a nap, when I get up for the day I typically keep going (I may have 0% productivity and accomplish nothing besides breathing oxygen, but I can stay upright longer than he can). I think he has more pain than I do, I still have pain and aches but its improved a lot. He has yet to gain any actual noticeable improvement with his medical protocol, I was the same with antibiotics, but he is on a very strong protocol ( I was never on a super strong ABX regime). A lot of our emotional aspects are very very similar, which is like a breathe of fresh air for me to have someone to talk to about all of this. Especially with it being a guy, usually its a girl that I end up talking to about emotional things and as bad as this is going to sound, talking to a girl-friend my age about emotional issues usually comes with strings attached in some way or another. With a guy, not so much, we are both fairly easy going people and we just talk about whatever we need to. We may be talking about something serious and something fun in the same conversation, just because we can.

Okay okay, Im rambling again which is one thing I can usually do all too well. I just dont like sharing only sad or depressing things all the time, its needed for me to share uplifting and positive things such as this every so often.

I have been praying for another guy friend who gets it for a long time, especially since my best friend moved away. Meeting E has been an answer to my prayers. I had this post practically written a few days after I met him a month ago, but do to busy christmas schedule and brain fog I couldn't get it all out onto paper like this.

I hope you all enjoy reading his post about his story :)

Introducing-Dr. Psychiatrist

I Did the Thing I Never Wanted to DO

I did it. After years of needing something I finally did it. I went and saw an actual, MD Psychiatrist, mentioned in my last post. I pushed off ever seeing a psychiatrist because I never wanted any of my health issue to actually "be in my head". Lyme is so often referred to as being a fake illness and its "all in peoples heads" and I never wanted my head to need formal examination.

I found the compromise though. I went to a special clinic which does more than ask me about depression and has more to offer than self help questionnaires( i.e. are you sad? Do you feel the whole world is against you? Do you have a problem with drugs? Have you ever smoked marijuana? Do you want to kill yourself? OK ill stop there)

This new clinic is a fairly newer discovery for me. Especially considering its almost considered local even, only an hour away. This clinic takes a more comprehensive and wholesome look at the psychiatric situation, they take into consideration thyroid health, infections (lyme being an infection they're familiar with), hormones, traumas, brain injuries, allergies, diet, exercise, supplements.
I feel more comfortable being evaluated by someone who is familiar with more tools than just the hammer, if you will. They also use a specialized brain scan to see the brain itself, they did an active and a resting scan on my brain.
With these results they can see which parts of my brain are over active and which are under active.

It was all a very fascinating process, ive never done anything like this before. Truthfully I never thought Id need to either.
The patient coordinator (or whatever her title was) spent a significant amount of time with me getting more details on my symptoms, even the lyme symptoms. It was a very thorough yet comfortable evaluation. She asked me to explain some of my symptoms, like what is brain fog for me, in which I said - Its hard for me to retrieve thoughts, very hard to focus, difficult or impossible to remember things, and hard to string together thoughts.
Ive never really had to refine the definition of a symptom like that before, I appreciated how well they were paying attention to detail.

On day 1 they had me come to the clinic, and do the first brain scan. They gave me an IV of some sort of dye then they had me play some computer game with letters. Man was that hard, I am so glad I didnt get a grade for that because it would have been really sad LOL. The point of this activity was to activate my brain, get the circulation flowing.
Then I went in to be scanned.
After the scan I met with the patient coordinator for my story and health history.

Day 2 (final day). They had me relax in a room alone comfortably for 10-15 minutes to get my brain to wind down and go to its resting state.
Following this I was scanned.
A few hours after the scan I met with the Doc. She was very friendly and again, thorough.

The first thing the dr. said to me was So you are actually making A's in school? I said I do, its hard but I do.
She was surprised and commended me for being able to do that.
She proceeded to explain more about the scans and what the process was, and what a normal scan looks like.
Then came my scans. My results. The things that determined what was actually, legitimately going on in my head.
She told me I have a severe amount of brain inflammation throughout and this needs to be corrected ASAP. She said this is part of my cognitive impairment.
She showed me the relaxed scan first.
On this, I had an overactive basal ganglia (fight or flight part of the brain) and a very overactive thalamus.
The inflammation created a diamond pattern.
The basal ganglia is a survival part of the brain, its what kicks into gear when you are in trouble.
Now keep in mind this is my RESTING scan. When im supposed to be calming down or getting ready to sleep-my brain goes into survival mode-red alert-whats happening
Then the Thalamus is related to post traumatic stress, I do not remember all this was associated with.

On the active scan-
I had an underactive frontal cortex, which is the part of the brain that does the thinking. Its part of the Here and Now, taking in whats going on and responding, focusing, concentrating.
The left temporal lobe is also underactive, which is related to memory.
So the thinking and memory parts of my brain are missing a lot of function.

When im at rest, my brain goes on red alert. When im active, it shuts off. The basal ganglia is over active on both scans, but less over active on the active scan.
Which is why I enjoy keeping busy so much, it tones the stress in my head down. Working long hours on my car-its like im literally helping my brain hide from itself. OR other activities.

I was also told by something showing up on my scans and by symptoms that I may have a vision disorder called Irlens Syndrome (also called scotopic syndrome). Which is a processing problem in the brain for vision, not in the eye. It can in some cases be caused by infections causing damage.
This disorder is related to how the brain intakes colors, and with this problem it can cause issues with reading, skipping lines, and remembering what you read (very condensed version of symptoms). The treatment for this is to wear special colored glasses or contacts. I would need to see someone trained in this to be evaluated and figure out what color filter I would need. Im not sure when I will be pursuing this....

I was also told I most likely had PANDAS based on the severely overactive basal ganglia and by what we believe may have been a strep infection last March.
She told me the sudden onset of anxiety and OCD is a huge, huge, indicator for PANDAS. She did say she didnt really see it in adults but it was hard to argue with the symptoms and tests.
(ha, guess im special!!)

I had a strong strong feeling I was about to be diagnosed with PANDAS. Ive been pursuing that for a couple months now, trying to learn more on tests and treatments for it. I did not however know that PANDAS turned on the basal ganglia like that though (im sure ive read it, but I dont really understand the brain all that well. and I forget things that I dont understand). I thought PANDAS was really only visible through symptoms and strep tests.

I was told I may have had a little bit of ADD judging by my frontal lobe, it may not have been severe enough pre-lyme to have caused me any noticeable issue. The stress and damage from the lyme could have brought about its presentation.

Treatments-
#1 she emphasized that I do, hyperbaric oxygen. Ive never done this before. She said its vital for neurogenesis and bringing circulation back in my brain. She said I need to do 30 treatments.
Currently attempting to figure out the logistics of that.

#2, she gave me two supplements to take. One is a mix, high dose fish oil, strong memory booster and multi vitamin. The other supplement is for sleep, it has GABA, L Glutamine, Taurine, Tyrosine, and phosphitadyl serine in it.

Ive started the supplements. Hasn't been long so I do not really have much to report. The first supplement actually covered/replaced some thing I had previously been taking. Thankfully I actually came off some things by starting this. Thats a very rare occurrence in my world!!

All in all
Ive been told I have severe inflammation in my brain and whole body, I have brain damage, possibly Irlens syndrome, and I have PANDAS. Ill be darned. The dr actually managed to impress me with what they did and what they found. It isn't all that often a dr actually makes me say wow.

I was told 6 months on the supplements and 30 treatments on the hyperbaric.

The reason it took me so long to post on it (a week!), it took me a bit to digest all of this. I know I was expecting them to find something wrong ( I would have been mad if they didnt!) but just the fact that things were found and they do have significance.
On top of that, I still am learning about all of this. Im still reading through all my reports and understanding all the information ive been given.
And still checking out what options I have to help me out as far as symptoms. Im taking herbal anti depressants, GABA, L-Theanine, and some hormonal supports which have all helped with anxiety over the last several months. I think that last time I had a full breakdown was the end of October/beginning of November. The crying and severe anxiety has improved.
Im hoping this new protocol with get rid of the anxiety altogether and bring back my brain function.
I just feel so apathetic and empty, id really really like to see that disappear and get replaced with the old me
Maybe thats a big request, but surely with enough time and patience??'

One last thing. The best explanation as to how I feel was said by Shannon Goertzon on her blog four years ago in this post called Finding My Brave
Her blog posts were the main reason I searched out PANDAS, her symptoms match mine to a T, she seems much worse though. I highly suggest Shannons blog, she's been through the wringer more than once!! Very intelligent and endearing woman to read from!