If It Breaks

Broken Things
Send us a big message. Its taken me a while to understand this. As I am working on a degree in psychology, I have been taught more and more on how to notice what is going on inside of myself so that I can better understand what is going on inside of someone else world. When something breaks, that "thing" sends a very broad yet specific message, "time to make a new choice".

Choices are hard, or at least they can be. Humans naturally fear the unknown, why? I haven't taken that class yet. Theres gotta be a reason though, Im sure of it.
Choices can bring fun new things, like choosing to buy something that has taken a while to save up for. Or taking a trip to somewhere that you have always wanted to go too.
Choosing to live in a new town, or even a new state, can be very scary. In that instance, there is a lot of unknown that has to be processed, maybe thats why people tend to live in a more stagnant life.

In my experience, and I have mentioned this many times before, people with a severe chronic illness have been put through some sort of major trauma that played part as a catalyst in their illness.
That is part of the reason I have chosen to earn a degree in psychology, to better understand myself and to better advocate for those who have been through more than they could handle. It can be hard to choose to move on from whatever the trauma was. Personally, I am in the "rebuilding" stage of lyme. I no longer have an active raging infection, it may not be 100% gone but it is no longer tearing my body apart. I have to repair the damage. Over the last few years my doctor has been working on my adrenals and hormones, those seem to being doing well according to my last test results.
My immune system is not leveled out yet, I have been rotating through having a high positive ANA to a negative ANA. ANA is an autoimmune test, it shows if the body is destroying its own tissue somewhere(as I understand it). In March this year my ANA was 1:160, which is a very high + test. In July it was negative, July I was also feeling the best with the least physical complaints. This month it tested at a 1:80, which is a high + but not as severe as the 1:160. Meaning it could be worse, but somewhere in my body I have damage occurring due to my own immune system.

I had to make a choice, I had to choose to take initiative and figure out what I needed to change in my life to push my body in the right direction. I decided to try some high doses of some supplements I had been taking earlier this year when my ANA was normal. I had to choose to realize (and not ignore) that the biggest problem I have is that I just dont handle stress well. I know I dont. A good friend of mine has been telling me about how I need to meditate to calm my mind and I need to do it frequently to keep my body in the right pattern. Have I done that yet? No. Do I know I need to? Yes. I do. I have been doing some deep breathing when I think about it and when I am in the sauna I try to relax and get the world out of my mind. I am pushing myself in the right direction, eventually Ill get there.

Having things "broken" with myself has taught me that choices are important. And ignoring a choice, is by default making a choice. I have learned to ask myself "if it breaks, does it heal?" , because the important things in life that truly matter can either heal or be fixed. Think about it. The most important thing in my life is my relationship with God, do I make mistakes? All the time, always will. I try my best but in the end I am human and will make mistakes. (Anyone who cant see that they make mistakes just needs a new mirror to see themselves in). People we care about in life, we hold close and go out of our way to make a priority in our lives. Our hobbies, its easy to pickup a hobby and make it whatever you want to be. My hobby is my old car, I have done all sorts of projects on it to make it "better" and continue to make plans for more projects on the car. I make it a priority in my life because I enjoy it.  If my car breaks, I fix it, not because I "can" but because its an opportunity for me to learn something new.
Reaching the end of the year, I have looked back on some projects and people in my life and thought about how they could have gone different. But in reality I know whatever was suppose to happen, did. Nothing "failed" because I didn't work hard enough or because I "did it wrong". I made choices to move on, because my heart was no longer in it. I have had a few friends who may have been a bit toxic in my life that I pushed away (on purpose) and I have thought to myself, was that the right thing? Sure I could have done some things a bit different but, I made choices. It wont be the last time I have to make some space between myself and others. I had to abandon one of my car projects and sell it on to the next owner, because my heart was no longer in it. That project had morphed into a pit, and that pit sucked all the fun out of it.

Now that the year is coming to an end I am trying to make choices on what I want to do with myself for the next coming year. This time next year I should be graduated with a degree in Psychology and a minor in sociology. I will be facing some big changes then! Good changes! But I know that I myself, need to be a little more prepared than I am for some of the things coming in the future.

IV C

This morning 
Im spending the morning getting an IV of vitamin C, magnesium, and amino acids. In hopes that this will make me feel better. In the past the IV's have helped a lot, my practitioner has been unable to get the glutathione due to company backorder. Which is surprising to me that months later that it is still on back order, but anyway, here we are.
Yesterday at work i used the cold laser on my head for a few minutes to see if that would help, and it did. In the past when anxiety and ocd were severe the laser seemed like it would reduce the severity every time. It works by decreasing inflammation and increasing circulation, which apparently my brain needs.
PANDAS and lyme both cause inflammation in the brain, for one lyme insomnia can be inflammation related. Im wondering if maybe I am going through a PANDAS flair, judging by my symptoms I have been having it wouldnt shock me if the stress from school was causing me to have a flair.
I havent really had any full blown anxiety, but I have noticed I have had a lot of thought fixation, heart racing, fatigue, food tastes bad, low appetite, my stomach has been making weird noises, and I havent felt just right.

Yesterday morning I was feeling terrible, and I was dragging and didnt really want to work or do anything. In the afternoon I did the laser, and by that evening I was feeling much much better and I was able to have fun with some friends. Total flip. Back when I had full on PANDAS I did the laser therapy frequently, I think it may be time to get back to that, at least for the duration of the school year.

I tested myself on the biofeedback machine yesterday, its a machine that can find stresses in the body electronically, my body had stresses towards strep, lyme, chronic inflammation, respiratory virus, and a few other nasty things.
I have been around a bunch of sick people lately, who were diagnosed with a respiratory virus. All over the last two weeks, I partly wonder if maybe my exposure to the virus, could have flipped out my immune system. Instead of me getting a respiratory cough like they did, maybe maybe immune system response made me feel poorly and I ended up with inflammation in my brain instead.
I know in the past when I have had minor symptom flairs, usually it can be traced back to some sick people around me. I dont *normally* get regular sick, like a cold or anything like that. It does happen but not all that often.

I am going Monday to get some blood drawn, its been a while since I have had everything checked out.

Headaches

Ouch

I dont know what ive done, but headaches have been a frequent occurrence for me. Nothing seems to make them completely go away which is also unusual, ive had one all day today, 4 tylenol in so far. A few hours ago I started shaking, and its pretty bad its not just a tremor. Typing is kinda difficult.
Not sure what I did, but I did it!

Yesterday was a decent enough day, I got plenty done and hung out with some friends. It was alright, I wasn't terribly connected but it was fun being out of the house.
I am starting to wonder if I am in some sort of PANDAS flair, though mild. Because over the last few weeks I have been having the PANDAS symptoms. Friday in math class I was nearly crying i was in so much pain. I have been tearing up a lot lately and have been hurting a lot more. My mind hasn't been the greatest, depression has been terrible and I feel very disconnected from the rest of the world.

Ive been contemplating and praying on what I should do to try to fix it, but im not really sure. Ive been taking some natural antibiotics and antiparasitics, they have been giving me a big reaction, so ive dropped back on those. I cant handle a herx right now, but I have been getting in the sauna and I think its been helpful.

Depersonalization

Lets Talk
Ok so my four years or so that I have been writing this blog I have shared (overshared?) on my mental health, which was severely affected by the lyme.

People that know me in person who read this blog, know how secretive I am about all of my mental health issues. Its not that I dont like to talk about it, I just dont want to seem like A complainer. Its easy to over share to a listening ear.
At my worst, I was collapsing from panic and hiding it. I would feel it coming on and I would go hide in the bathroom or shower (if I was home) and wait it out. I was hellbent about letting anyone see my breakdown, Im a save your tears for the pillow kind of person. I think that it is great to have people to share with but I dont think its the greatest to share anything and everything, all the time. Plus I am afraid of letting anyone see me fall apart, why? Not sure.

Earlier this year when I had to do hyperbaric oxygen therapy, my brain began recovering and my anxiety began going away as well as my panic and other psychological symptoms. The game began to change and I realized I was beginning to feel like "me" again. I would wake up and I was me, I would go to bed and I was me, I would go to work and I was me. I had forgotten what that felt like, I still dont entirely know how to explain all of it. I dont know how to describe what "I" feel like vs. what "that" felt like. Cold? Dark? Watching from the shadows? Living in a dream? Watching the world go by in technicolor?

I began recovering during the summer and I am still learning to rediscover myself. One odd thing ive done (or at least odd to other people) is that I dont date. At all, ever. Never been on one, never tried. And ive rejected the offers ive gotten (and ive had offers from both genders, but thats a story for another day).
Its scary to look back and realize how much I have forgotten. Its like I can see blank spaces in my memory.
Before the PANDAS I had brain fog and trouble remembering and it was severe at times, but I dont think I felt like I had forgotten chunks of my life.\
Now I think I can say that, now that I have pulled out of the PANDAS nightmare its like I can look back and see myself in this bubble of an outside reality. Its hard to believe that I felt like that, and that my body didnt feel like mine and how I could go to work and function an entirely normal day...except I spent every single minute every day thinking about how I wanted to get out of my body. I wanted to get out of it, I felt cold all the time (emotionally) and I truly didnt enjoy anything.
I had some good days of course, but I had an overwhelming number of scary days where I know that I should have reached out to someone, a professional.

Fast forward to school, this semester. Abnormal psychology class with my favorite teacher ever!
Weekly, we are assigned a case study to read on different mental dissorders. This semester I realised I could relate myself and have a story to tell on probably 85% of the disorders that we covered. OCD, depersonalization, anxiety, panic +agoraphobia, narcissism, phobias, and a few im forgetting.
On the bright side, I did a great job writing and I got some amazing grades and some emails from my professor about how great of a job I have done. But I have talked to her and she knows about my health issues and I have written on them for school, all in all, I learned more about me and the seriousness of what some of what I went through was.
Depersonalisation was one that we covered towards the beginning of the semester, watching the assigned videos and reading the case study was an eye opening moment.
Depersonalization and Multiple personality disorder are related to eachother, usually depersonalsation will happen first and in the worse case scenario a persons personality will split and create "alters" to "protect" them from whatever the initial trauma was.
Multiple personality disorder is extremely rare, <1% of the US population. Often shows up in young kids, not necessarily adults (if I remember correctly).

The class really made me understand what kind of stress my body was under, for me to pull away from "myself" and feel so "gone" and distant, my brain would have had to have been under a heavy assault. I stand in awe today, that I am still here. I am for the most part, OK. Progress is still to be made but ya know what? Im alright.
I thank God. Once again man didn't have any answer as to what was wrong with me and they couldnt see the severity of what was happening to me. I prayed to die, a lot.
Suicide is something that gets covered extensively in any psych class, its a big deal and it is not as uncommon as it should be. I know for a fact that if I did not pray to God and have faith that everything was for a purpose, and that I did not pray for God to lead me through this stronger than when I first started, I would have killed myself. The professor talking about this subject was "triggering" it woke up a lot of thoughts and memories and stirred plenty of emotions. I put myself in the shoes of others, for the "what if" scenario and I did not want to walk that reality.
Thats not what I was put on this earth for.
I learned that if I had been truthful about my psychological stresses to my therapist when I was going, that I would have been put on high risk suicide watch because I met the criteria by 3 fold or so.
One of the questions during this particular lesson was, how many times a day / week do you think about death or suicide.
The "normal" number, was not a very big one at all.
The amount of times a "sick" person who either might or did commit suicide, was a fraction of my number. A small fraction.
In other words, I contemplated death and suicide by conscious thought way more than what was okay (not that any is okay, our thoughts can be sending us a message).
Depersonalization plays into a lot of psych issues including PTSD, depression, MPD, and severe panic or trauma. It is another psychological issue that does not just "happen" and "last", like (unfortunatly) depression or anxiety can.
Anxiety usually comes in a wave, may last minutes or hours, but then at some point it will end and may not happen again for a while. Depersonalisation is kinda like a cloud, it hovers and stays, lasting for days. Weeks. 2 years.
It alters reality and perception, self image and outlook on life.

I now understand why I did not handle lyme the same way as some of the other people I know who have been affected, it was due to PANDAS and severe infectious+autoimmune trauma to my brain and nervous system. I am grateful for my recovery, I am not done yet but I am "me"and I am thankful to God for giving me purpose and giving me the voice to help give others hope. I havent met anyone on this planet yet that hasnt been through SOMETHING that was in need of empathy and understanding.

Why do I bring this up?
Todays post has nothing to do with me, i'm doing alright and today was a good day. I was watching a video on youtube from a person I watch on a frequent ish basis, and this person was talking about why they havent posted anything in a while and it was due to depression, anxiety and depersonalisation.

This person has been on meds for depression for almost a decade, and this year they began to quit working and the replacement meds weren't working either. He talked about depersonalisation and how he felt like he was in a dream, he was talking on the phone with his mom and said it didnt feel like he was even talking on the phone or doing anything. He was just there.
I couldnt help but wonder if he tried alternative medicine like I have, would he be recovering or have answers as to why the drugs stopped working?
Watching him talk about what happened to him woke up some thoughts from class that I thought I should share with you guys. Offer some hope, life can and will get better. I am thankful I only had this for just a few years instead of decades.
I cannot stress enough that help is out there, it just takes a little time and patience to find. Dont ignore what your body is saying, whether it be joint pain from lyme, panic attacks from strep, PTSD from trauma, whatever it may be. Its a side affect of a problem that our bodies are trying to get us to pay attention to, they arent a torture sentence for punishment.

I can easily keep talking about this subject, working around sick people and lyme patients on a frequent basis has opened my eyes towards how common psychological suffering is...and how many different ways it manifests itself.
Its sad that we are all walking this earth together, each one of us fighting a personal battle either small or large, and yet we are all "good" whenever the shallow "how are you?" gets asked.
Love is free, we dont have to understand anything at all to show kindness to someone in need. I talk a good talk when it comes to seeming like I know a thing or two about disease and psychological things, but at the heart of it all I just want to be a caring human who wants to warm someones day. I do not understand what it is like to have cancer, to lose a spouse or a parent, or what it is like to fight in combat, but I can still offer someone a listening ear and the few thoughts I have to share (Im a guy I like to offer a solution, its how im wired).

Anyway, I havent written anything long in a while so I guess its been over due. I wasnt even planning on writing anything today, but thats usually how it goes.

"Give thanks in all circumstances, for this is Gods will for you in Christ Jesus" 1 Thessalonians 5:18

Ponderings

Anxiety Returns
In the last week my anxiety has not been so great, and it isnt the usual "stress" anxiety where my thoughts race and I cant stop thinking about whatever it is thats bugging me (usually school). Its the kind where I feel like nothing is good enough, food doesnt taste right, I dont talk much when Im out with my friends, and my muscles will tense up randomly. I mean tense up hard, not like a cramp, but my fingers and or toes may curl, my calfs and my arms will tighten up and maybe contort into an odd shape thats not exactly "resting".
I dont know how else to explain it, but my body hasnt been happy. School is stressful right now and I have had to get a tutor for one class, and I havent even been able to find a tutor for the other class I need help with. And that is a big deal, I thought that was the only thing causing my PANDAS type anxiety.

Yesterday was a crazy day, it was very reminiscent of how I felt last year when I was doing so terrible. I was tired the whole day, but my brain worked well enough for me to get a lot of homework done (and the homework seemed to make sense), then last night I started feeling worse. With one of my fish tanks, I had a small issue that ended in a wet floor and an annoying mess.
Usually that doesnt stress me out too bad but yesterday It made me mad, I dont normally get mad. I had three tanks set up, one saltwater, one freshwater with just plants (no fish), and then the tank my used to be best friend gave me that had his fish in it (he couldnt take it to college).
I have been way too busy to maintain the tanks, so I decided that the two freshwater tanks needed to go. I texted some pictures to some friends and said whoever can help move them can have them, an hour or two later I was carrying my old best friends tank out with his fish to take over to another friends house (she was friends with him too), and another friend got my plants.
I thought great, two stresses out of my way. I was sad to get rid of the fish, even if I don't talk to that friend anymore, I like fish. I made sure the friend who got the fish was a friend that wouldnt kill it, but still I felt sad.
I was borderline manic yesterday, it was a day I couldn't stop and sit down. I cleaned, I took down and moved a fish tank, I carried 18 gallons of water across my friends yard and up the stairs, in one trip (8.3lbs X 18=149 LBS, I weight 147LBS FYI). All day I constantly felt frustrated and like I needed to be accomplishing something, I couldnt just stop. Yesterday I also had tears in my eyes several times, not crying or upset, it just happened. Which is something else that happened a lot last year and the year before with the whole PANDAS thing.
When I carried the 3 jugs of water into my friends house, in one trip, with one jug handle in each hand and on hanging from my wrist, I knew something wasnt right. I cant normally lift my bodys weight for one, much less carry it around and up stairs, so that was my tip off that I must be having an adrenaline rush or something. The water was so heavy it left a bruise on my wrist where I carried it. Didnt hurt when I carried it yesterday.

Then today, I woke up feeling not so hot. I had math class today and I met with the teacher after for some tutoring, and it went well, stressful but well.
When I got into my car I realised I was about ready for a mental breakdown and I was worn out, not terrible like I used to have happen to me, but I felt it. I had tears in my eyes on my way back to work, again no specific reason. Same thing when I got to work, I had to wipe my eyes with a tissue a few times when I was working.
Then when it was all over and I went home for dinner, I got a notifcation on my phone and all of my emotions from the last week or two made sense.
It was a calendar notification, this day 3 years ago is when my old best friend and I became best friends, its the day we first hung out and I first went over to his house. Every year after we would always do something for fun to celebrate. Except this one. I had forgotten about it, by some miracle. It hadnt even occured to me that today was any other day. But here we are.

I always associate the PANDAS symptoms and that friend together, because I got the PANDAS a few months after I first got to know him and hes the one I always talked to about it (and the only person I felt safe talking to about it because he seemed to get it). So to me it makes sense that those symptoms would coincide with thinking about that friend...
I cant believe that my body is still so...reactive? Im not sure how to word it. I have never been one to be all that attached to people, I have my set people I like and the ones I feel comfortable with, and thats good enough. I dont really strive to make friends with everyone I can at school (in fact some of those people I avoid because I think theyre gross, because well...some college kids are gross).
I dont understand why I cant get over this one person, its been months since Ive spoken to them, I have much better friends that wouldnt ever just drop me off the face of the earth. Im about to facetime one of them in a little bit, and I was facetiming one of them earlier from work.
Im telling myself its related to the PANDAS because of the OCD factor. Not sure if its true or not, because truthfully I dont know.
I even have dreams where I see that friend, usually in the dreams we are just hanging out doing something we used to do. I had two dreams or so last week. I didnt do that when we were friends, like ever at all.

I guess I need to keep on praying. God has gotten me through everything so far and he has placed some amazing people in my life who I love. One day, if its still bugging me and I find myself with free time, maybe I will talk to a counselor about it. I just hate to feel like I have made that big of a deal about this one person or let this person control that much of my life in some way.

It will be interesting to look back this time next year and see whats happening. Ive thought about last year a lot, and I like this one a lot more than the last several. By a ton. Next year is gonna be even better, Ive already decided it.

Now if you'll excuse me, I have a calendar notification to permanently delete.

Teaching Class

This Week

I helped teach my abnormal psychology class. It was a ton of fun! I had no idea that I would be teaching a portion of the class! So heres the story.

Yesterday morning in class, the teacher wasnt feeling so great. She said "okay, who actually wants to listen to me talk about this powerpoint today? Its not that interesting." Which is highly unusual. So she spent a few minutes talking with all of us and then one guy said "ill teach from the powerpoint". She handed him the projector remote and off he went, using the teachers powerpoint! He spoke for a few minutes, then another girl wanted to jump in so the two of them switched.

5-10 minutes later she asked the class if anyone wanted to take her place, I raised my hand. Next thing I knew I was talking in front of a classroom!

After 5-10 I asked the class who wanted to jump in next? No one raised their hand. The two people before me said "you're doing great this is interesting". I tried a few more times, but before it was all said and done I had taught the class until the very end! I stood in front of a classroom for around an hour going off the teachers power point, talking away! Asking students questions! The teacher had a few videos in the power point for us to watch, so I played those (with a little help from the teacher). At the end of each, I would slide back the video and hold it at a still of the main character from the video and ask the class "okay what'd you notice", which is exactly what our teacher asks when shes teaching. And for the most part the regular talking students played along and made their commentary and pointed out their observations, it was great! (normally our class is very quiet, only a few people are brave enough to speak for some reason)

When I ran out of slides and had no more to say, I asked the students to turn in their attendance notecards and let them know they were free to go.

And then they did it.

I couldnt believe I had just spent my morning teach an upper level psychology class. The class was on ADHD, autism, and Aspergers. 

Because of my work, I have one on one experience with children with all of the above. So I was able to put in my own experience into the class and add to the teachers power point, and I was surprised at how much attention they all payed to me. The teacher is a fantastic teacher, one of my most favorite ever, its easy for her to keep the classes attention (which in any class may not be easy), but I kept them awake LOL

The teacher had a slide labelled "vaccines do not cause autism", I said oh look, we arent going to be talking about this subject in todays class-then I skipped to the next slide.

That is much too complex and deep of a subject to speak on from just one slide. After the class I spoke to the teacher and asked her if she had actually planned any bit of this, and she said nope it was all on the fly and because the first guy offered to teach.

I told her she was brilliant, she was able to sit and watch class while the students taught eachother LOL

I asked her her thoughts on how I did, she told me I did great and she laughed about the vaccine slide. I talked to her briefly on some of the cases ive met where children have gone non verbal after their shots and we both agreed that their are a lot of factors involved.

All in all it was a fun experience, the other two students that taught first, would chime in and help me out and add their thoughts and what they noticed (which was very much appreciated). The first guy at one point went online to find out more information on one of the ladies we watched a video on, who was an adult with Aspergers who was on the X Factor(i think). So he jumped in and informed me and the rest of the class of who this lady was in a bit more detail.'

The second teacher, she would jump in and share some of her experiences during different parts, especially if I asked any questions. She kept the crickets silent for me! I think the three of us made a great team.

Looking Back

Okay so sure, teaching people is cool but WHY is this really all that interesting?

A year ago my anxiety was so bad that I could barely talk to other people, and I almost couldnt talk to strangers at all. Talking to a big group for one would have been out of the picture, for two doing it as a surprise and impromptu without preparation-double anxiety.

PANDAS/strep changed my psychological and social life big time. I stopped connecting with people and I became very anti social, and social anxiety was crippling. You might could even say nightmare inducing. Something big like public speaking would have left me a shaking nervous, stuttering mess last year and the year before. And I probably would have left after class, gotten into my car, and reclined while my body shook and cried until I could drive home. 

But no, I did it without thinking twice and I enjoyed it! For me, this is a big personal victory.

It helped that this was a subject that I have personal experience with. OCD plays a lot into people with Autism spectrum, they tend to have a lot of fixations. Well heck I know what thats like! So it made it easier for me to talk about and put into my own words instead of just reading it off the slide.

Adrenal Test

Hormones and Adrenals
This last month has really been up and down, ive had some decent days and some not so hot. A couple nights ago I slept terrible, I woke up a bunch of times and dragged through the whole day.
Last night I fell asleep early around 11;30pm. I remember being awake listening something car related on youtube, and then I remember waking up at some point to close my laptop. Then I woke up for the day and today was a decent day!
I woke up without my alarm, even fell asleep before setting my alarm actually. Why I fell asleep at a decent hour? No idea. I felt worn out yesterday and dragged further down as the day went on.
Then today I felt decent.

The full moon was the day before yesterday, that had something to do with it im sure.

I got my saliva adrenal and hormone results back today! I think I mentioned in my last post that I was having those checked. My adrenals are only beginning of phase 1 fatigue, meaning only very mildly worn out. Morning, daytime, and afternoon cortisol is good, night time is a little bit low.
Low cortisol at night can disrupt sleep and blood sugar, which is why I sleep better when I eat at night, especially my protein shake before bed. This was pretty exciting news. Turns out my body is working and my exercise isn't wearing me out!
Not that I am exercising this deep into the school year, only my patience is being exercises really. But. I did a lot during the summer and I will be getting back to it! Just gotta pass chemistry.

My hormones were also normal, my estrogen was in the normal male rage, same with progesterone, and the ratio between the two was fine. Testosterone was mid normal range, a little higher may be beneficial for someone as young as me but its normal none the less. Plus I take a supplement to help with testosterone. I notice it really helps my mood over time.

I have some blood tests I need to get done, but I just havent had the time to get it drawn since Im in school 5 days a week. At some point soon I will have that checked too.

A few years ago I was at stage 3 adrenal fatigue, which is the worst it can be. I didn't have much room to work with because they were so severe, but progress has been made.

In Other News
One of the doctors I work with was bitten twice this summer by ticks.
The first time she thought it was a mole, so she put a bandaid on it and kept it for 10 days. (OUCH!)
She took supplements and saw her acupuncturist, and she said she thought she was fine. Towards the end of the summer when she was bitten again, she started to go down hill. She cut back her work schedule and had to call out of work a few times, went to the hospital once. To us with lyme and who get it, we see someone like this and say "been there done that".
The hospital did exactly what you would expect with someone with lyme, "you have what?" "we cant find anything wrong with you"
let me pretend to put on my shocked face.

Well on this last friday, she went to an ILADS LLMD,I went with her for the first 30 min of her appointment (but had to leave for school).
I loved the doctor, this lady for sure knows her stuff and sounds like she is the real deal. She works with pharmaceuticals and supplements, she even said that the gut must be made right first if you want the rest of the body to heal. Gut first brain second, I thought that was interesting but it made sense. A lot of our immune system comes from our stomach.
During the appointment my friend (the sick one) said "I didnt really actually believe that people really felt this sick when they complained about lyme, or that they actually had all of these symptoms"
and she looked at me when she said that.
I thought "woman youve known me since I was 10 years old and you question how ive felt the last almost decade????" but I was good and kept my mouth shut. I knew this woman was about to get antibiotics and discover what a real herx felt like, in which I would probably feel really bad when I see how terrible she feels. Shes been taking some herbs for lyme but shes continued down hill, so obviously its not enough. The LLMD, who works with dr. Horowitz in NY, prescribed her malarone, LDN, and hydroxychloroquin. Which is primarily for bartonella and babesia.
She picked up the meds today, Im waiting to see how she does on them. Or if she really even takes them, doctors usually make the worst patients.
I love the woman to death and she has good reason for her apprehension of the prescription medicines due to some of her past health issues, but sometimes you have to bite the bullet and hope for the best. Or as I like to put it, have some faith.
Im not a fan of prescriptions, but this is the doc that we in our area have access too and shes reasonably affordable and reasonably local to drive too. Most people cant say that. Plus this doctor has a decent education in the alternatives it seems and said herself that antibiotics without probiotics can be a death sentence. Which I would thank could be true if you end up with chronic gut issues from too many drugs. I didnt get to stay for all of the conversation, but she said the drugs arent a cure all.

Ive been really pushing her to do her research, and she really has started to get education on lyme and its co infections. Im impressed. I can see that shes having brain fog and memory issues, im not so sure she can see it. Ive noticed her mood has changed and shes been a bit more sassy and short tempered with people on occasion (nothing extreme. just not her normal). I just hope that she realises that lyme is complex and some people really do struggle a lifetime with it. Her sister in law also has it and has to change clothes 1-3 times a night due to sweating (SOAKING) them during her sleep. And my friend didnt realise the severity of that, even though ive been waiving the big red flag for her sister in law telling her about how terrible her sweating is at night. I swear one day someone will listen to me LOL. The same LLMD told her sister in law that she has a long journey ahead and its going to be a while before she gets better. Her sister in law and I are two peas in a pod when it comes to talking about fatigue and not sleeping and all the peculiar symptoms, I can tell she gets it (which I knew, that meant she had it!).
My friend was DX'd with lyme, babesia, and bartonella. The sister in law was DX'd with RMSF (per + on blood), lyme, and bartonella. Im very interested to see their futures unfold with treatment.

Its been unreal how many people I have met who have lyme this year, some just infected. It must have been a very very severe year for vector borne disease...

Thinking

Im Not Sure Where To Start
Hey you guys, been a month now and im trying not to go too long without longing life here on the blog.
This school semester is killing me, psych and sociology are going awesome, chemistry and pre calc are knocking me out. Me and numbers and memorizing and focusing....not so great! I love psychology, I think I have the best teacher in the world, I really do. Today after class I spent almost half an hour talking to her about my experiences in the clinic I work in, compared to what I had seen in today lecture. Today we talked about alcoholism and alcohol use (earlier this week was drugs and controlled substances), so I talked about how we see so many people who use food or drugs as their way to cope with life and most of that is because its socially acceptable to eat a lot for comfort.

We also talked about how many clients will lie to your face "oh no, im not doing that anymore" then follow up and say "except for... four times yesterday, then today for breakfast, plus when I was on the way here". I asked my teacher, "so when will we cover the stats on how many clients will never even try to get better or how they will just get more creative at hiding from their problem" and thats how we got onto the subject. It was very enjoyable, she is someone who definitely gets it, who sees life through their own eyes and not someone who hides behind rose glasses (or at least does a good job at appearing that way). That was probably the highlight of my day, could even be my week.

As far as my actual health goes, I dont want to say it and I dont want to claim it, but I have had a bunch of rough days in the last few weeks.
Monday morning I woke up at 5am, after a demonic nightmare (very rare for me. very) and I was wide awake, so I functioned that day on 3 hours of rough sleep. Tuesday was similar, I was up at 5 after a weird dream but managed to fall back to sleep. Then at 6:30am I woke up and that was it, but I did sleep around 7 or so hours this time so it was better than the day before. Tuesday night I was asleep around 11:30pm, and then i slept until 10:30am wednesday. I would call that pretty solid, but still I was worn out. And allll of that leads us up to today, which is still rough and I cant think. My brain and focus checked out.

Emotionally, except for the last couple of weeks where Ive felt worn out, Ive had a LOT of really good days. Days  that I can ride around the car and enjoy my time listening to my music and having fun. No complaints. I have been very grateful for the reminder of what that all actually feels like. Even now, im not feeling great physically or emotionally, but its not so bad compared to a year ago. Its rough and I need to get this figured out sooner rather than later, I know part of it is stress and overworking myself.

I have been getting back in the sauna again, last week I got in for 45-60 minutes 5-6 times. That helped me a lot, but for whatever reason it didnt stick to this week. I got in again today for the first time this week, im praying that tomorrow will be a great day. If I can make it through work and some studying, thats all I ask.
I have been taking more time off work, I took nearly all of today off work to get some homework and rest in.

One personal thing has been weighing on me a ton and Its something I do wish would just go away. But I know better than that, and theres no lessons to be learned if my problems disappear into thin air. The end of October is the anniversary of the death of someone who used to be my best friend, and I was always involved with that with my friend every year. Now, nothing. He doesn't talk to me anymore and won't answer my calls, texts, emails etc. so I know better than to try to send him another message of any sorts. Its just odd, being so close to someone and being a part of special times in their life (though this one is rather tragic, not sure special is really the right word, maybe I should say meaningful instead ?), then just being gone from their life. But, for now, it just is what it is.

This coming week I am going to get some blood work done to checkout whats going on in my body. Its been several months since I have had anything checked out, I may find a cause to why I haven't been feeling so hot.

Back to School

Math Class
Its the end of the first week of September and school is completely back in action and in full swing! I kept doing some classes through the summer, so I never took a full break per say. But doing a couple of scattered classes over the whole summer is still so much easier than a full load, which, yet again, I somehow managed to forget.

Today for the first time I had to admit what I would refer to as defeat. I had to talk to my boss at the end of the work day and for the first time EVER in my rather short working career, cut my hours. I just cant do it. Im overwhelmed and my body is tired. I honestly think I did better at getting things done when I felt like crap than I do now, I think the adrenaline from being afraid of falling asleep in class and falling short may have been needed to keep me running like I was.
I just had to stop. Five college classes and 30 hour work weeks, and about 25 hours of homework at home every week. I cant even go to the gym or hang out with friends at ALL because i'm always staring down a book like my life depends on it.
Im taking abnormal psychology, Chemistry +chem lab (3 hours long, twice a week, whose jealous ?), Pre Calculus, and Globalization. I spend so much time doing math and chemistry, I forgot I was taking Globalization. I barely have time to even take the other classes. On Wednesday I spent the time after I got up, all the way until after 9:15pm or so, doing math and chemistry. I could barely move I was so tired, my only breaks were eating and going to math class(ok so that wasn't a break).

Cutting down on going to work is my LEAST favorite thing to do. I enjoy the people and the job itself way too much. I don't have to "act" a certain way and I don't really worry about if I'm being talked about behind my back, unlike some other crowds of mine.
Plus working of course, provides funding for my hobbies which is my escape from stress. Kinda a catch 22, working to be able to pay to de stress or not working to de stress. Hm.

Today, what broke me and made me wave the white flag, I completely bombed my first math test for the semester. It was 100% because I just didn't have the time to study, I spent all my free time doing homework. I knew this stuff, this was a repeat from last semester, I aced the homework. It wasn't even a long or particularly hard test. I was just so tired and I hadn't been able to study, which is something I have to do for math because I am not wired to do math.

Needless to say. Im a bit depressed. 90% is probably due to just being worn out, this is the busiest school schedule ive ever had, chemistry should really be considered two classes instead of one. I knew this was going to be a rough schedule, I just did not realize how bad. Only three more months to go. The first month went by quick. Thats good right? I just have to redo the first month three more times, then the semester is over LOL

Ive been thinking a lot lately, Ive fallen into a very anti social mood these days. Well. Most of this year I haven't really wanted to be around other people, its not just lately. Ive been paying attention to the people who I most enjoy being around and the people that stress me out.
One "friend" of mine, that was a classmate, who liked to call or text me with ALL of her complaints whenever she got frustrated with life. Which, she may have earned a Guinness world record for, I don't think she's even capable of having something right in her life. But don't worry, she was a very capable young woman, because nothing was EVER her fault. (read the sarcasm here). She was always nice to me for the most part but after a while, I realized she really drove me nuts.
Theres another two or three people that fall into this category, that were close friends and known for years. And I cant help but wonder, what should I do? I already avoid them and don't really talk to or see them in person...but they're my friends (i think). I feel like i'm doing something wrong. But I also feel like when I'm not in the room, I don't want to know what they actually talk about.

On the other side. The people at work are usually my favorite people to be around. Is it because they're that much different than the other people I know, or am I just more comfortable at work than I am around people outside of work. These are the things that keep me awake at night LOL.

Media
Ive payed more attention to some of the things I really enjoy to watch on tv. Tonight I was watching an old Joan Rivers clip on youtube, it was about this time five years ago that she was killed by some doctors. Joan was talking about how she originally had to work hard to reach the level that she reached. She was a woman, a jew, and said things that not just everyone wanted to hear (read men didn't like female competition 60 or so years ago), she had to work harder in some ways than other people in the business at the time.
Then when she was in her 50's, her husband killed himself and she lost her TV show. She lost her best friend, and all that she had worked for over her whole life, all in days of each other. I think a lot of people can sympathize, who have chronic disease. One day you have your life, wherever the milestone be that you've reached, and then one day its gone. Or one day you feel so horrible that you couldn't care less for what you do or don't have.
Joan said she had to go back to the bottom of the totem pole, she ended up back in regular night clubs with the kids who were trying to become someone. Here she was, in her fifties, had her own national tv show and prior career with Johnny Carson, and she was back at the starting point. To me, thats like graduating college with a doctorate then being sent back to Kindergarten to start over from the very beginning.
Later in the interview she talked about how some people are offended by her sense of comedy, and she listed some things that had upset people that she ended up changing. She also made a point that I agree with, if someone has a life that others could only ever wish for and they make $25 million a year. Its not a big deal to talk about their outfit.
On the surface its obvious that this is a joke, especially if you see what some people on TV wear . BUT looking at this a bit more seriously. What do we ourselves look at in ourselves or others, that we take too harshly? At the end of the day some things really don't matter. We can all make mistakes, sure, and be too critical about them. But some things we should just get over it, because tomorrow it wont matter. Easier said than done.
I appreciate Joans sense of humor because it makes some of the hard subjects lighter and she doesn't limit herself to a "box" that only certain people fit in. She even says, many times, that she is her own biggest critic.
Makes you think doesnt it?

No?

Okay so just me then.


One day its my goal to motivate myself to keep going with whatever the project or assignment is, without criticizing myself or others. I wonder, for real, that if one day this is how I will really work in my daily life.

Reflecting on The Waves

Reflecting on a Week of Changes
This week has been a unique time in my life. One, because some things in my work/personal life are changing. Two, because I am headed back to Kansas this weekend. Heading to Kansas is always a guarantee that my life will change, I go in feeling one way and come out on the other side feeling different (usually worn out). Then weeks and months later my life continues to change.

Ill start elaborating. Personal life-
An amazing coworker of mine, that is a cross between a mom and a best friend to me, is leaving our office to move to Virginia. This woman came in only a year ago, and cleaned house. She changed our entire work environment. She streamlined all of our systems, wrote protocols, held people accountable, increased business, and most importantly brought a smile to everyones face.
It is nothing short of a God send that this woman was placed in our office and our lives. She managed to remove all of the toxic personalities from our office and environment, so all this posts from the last two years or so about issues with coworkers-she solved six months ago. Thanks to her, I am able to go to work and enjoy it. My heart is back in it, life is good. I also gained confidence and value in myself, I have been shown how much I am worth to the business. I have held the position of professional multitasker for four years now, thanks to this woman my benefit has been recognized and I can see a higher value in myself in the office.
The amount of smiling patients that come into our office has increased, many came by today or this week to say goodbye We even had a surprise party earlier in the week and managed to surprise her, I was honored to be a big part of that. I like making sure people feel special, I think that day we all did a good job.
This person has actually been special enough to me, that today I gave her a link to this blog as a going away present. For those of you who have been reading for a long time, you know that this blog is a very secret safe haven of mine, that I have only given to a small handful of people. The first being a coworker last year, then E and one other girl friend of mine, and now this coworker. Thats only 4 people (unless I forgot someone).

Personal life Pt. 2
I have been thinking lately on how much my life has been on a continuously changing spin cycle for the last few years, especially since the strep infection in my brain. The anxiety and depression has subsided substantially since March. Looking back into October 2018, anxiety was hitting an all time high and I was collapsing. I was scared big time and answers were scarce. I wanted to crawl out of my skin, so many nights I was awake in bed praying that I could just stand up right out of my body and leave it behind. My body and I are on better speaking terms, it still has some catching up to do, but I thank God every day today for the body I have been given. The good, the bad, and the ugly. A few years back I had zero understanding of anxiety, now I get it.

Ya know, they don't say you "get it" until you GET IT. Thankfully, I GET IT now. I understand.

Anxiety is a complete and total change in mental capacity and functions, immediately. Sometimes its triggered and sometimes its a surprise. Ive had a few minor surprises lately with it, but all very minor and all very related to staying up too late or not sleeping. A year ago I couldn't stand to be in my own skin, good day or bad. I wanted out. It didnt feel right.
Two years ago I remember having plenty of vegetable moments, all too often just being too tired to do much. Hobbies weren't in the picture. Depression was made, and anxiety showed up.
Three years ago, I was only a few months into treatment with my doctor, and that was my first taste of feeling human again. Depression was frequent but not severe, anxiety was very mild or maybe non existent (I would have to check my notes).
Six years ago, I had to take time off school because I just couldn't function.
Seven years ago I had to recognize that my life had changed, from an event the year prior, and I would have to recognize my new life style of feeling unwell all the time "for no reason". All sports were dropped and any activity I could live without was left to the dust and never thought of as a possibility. Life had changed and the future was a scary place.

The future is happening, life has been ever changing. More scary changes than I care to think about, but all the changes have led to the person I have become. In the last few months, since my last visit to Kansas, I have come to appreciate the man I am becoming. I am flawed, my body is faulty, things still scare me, sometimes I dont know what Im doing. But this is the life God gave me, it wasn't an accident, it all has a purpose for his glory. Ive made it this far, if I was doing something that wrong God would have taken me out of the picture. I will be here to serve my purpose until God decides my time has come.

Personal Life Pt. 3
I have removed a lot of toxic people from my life in the last few months. I used to fear that I was being antisocial, and that I should be conforming to other peoples quirks and habits otherwise I was doing something wrong. Now I am realizing that those behaviors put me in situations that allowed me to be walked on and taken advantage of, and a lot of those "friends" may serve me better from a distance rather than on my speed dial. Some of these friends have known me for  along time, they may come back around and this may be a temporary change, or it may be time to forget about them. My "best" friend that I used to mention on a frequent basis has been MIA from my life since February. One day he didn't text me back, and I never heard from him again. Very long story short, I sent him an email asking for forgiveness for whatever I may have done, and I apologized for some of my own faults that I knew bothered him. That was the end of that. Sending that email hurt, I had to pour a lot of emotion and thought into it and I knew in my heart that nothing would come of it physically. I knew no matter what I said, was he going to respond. God has given me very strong intuition in my life, sometimes I "just know". But I said my piece, I put it out there, I got it all of my  chest, I asked for forgiveness, I asked God to forgive me for my mistakes-known and unknown.
After this event my life began to clear in a way, I started getting him off my mind. It hurt. It burned. Intuition says its not over and come the end of this year I need to be prepared for something, what that is-I dont know. I just know I should take note of what my intuition said.
I removed 90% of the things that kept my life anchored to this person in anyway, which consisted of deleting pictures from my phone, texts, and taking of the friendship ring that he gave me. One day I will dump that last 10%, which will be when I delete all of the pictures and messages, throw the ring away (turns out it cost like $10 on eBay, I found where he bought it on the first search, he probably put very little thought into it and it probably isn't worth keeping in my drawer), and take the one last picture off my dresser. Its just hard for me to part with memories that during a hard part of my life, brought me a lot of joy and relief from some painful realities. I havent decided if its intuition telling me to hold onto these things a little longer, or just sentiment.

This isn't the only friend Ive had incidence with this year, probably the most dramatic. One "best" friend started dating another " best" friend, then the two of them starting treating myself and others rather poorly. Another "great" friend of mine started dating a new guy, then said new guy got a bit handsy with the girls cousin in the pool. "Great" friend says it didnt happen, cousin gets upset. Lo and Behold, house divided on a rather serious matter there. I voiced my opinion and stepped out of the picture. Anyway, ill stop there with the drama, drama doesn't need to seem like its being glorified.
This year, I realized how much healthier and happier I was when I didnt go out with friends or spend an evening with certain people. I noticed that I was happier stressing over car parts, than I was being caught in drama which began to seem endless. Maybe right now I am feeling a bit antisocial and I am being a bit snobby about what quality of people I want to spend my time around. I think it may be time I start treating my social life with a little more respect, even if it means staying home and not being social.

Lyme-
I guess I could mention a little bit about the topic that gave me the reason to write my blog. Life is going well in the disease department. Sleep has struggled painfully this week, but I have had a lot on my mind. I have had some extremely severe leg cramps all day everyday for the last several days which have made it painful to walk, I'm blaming this on working on my car. Fatigue and motivation are a bit of a struggle, probably related to sleeping.
If I could sleep well, and wake up early, then maintain a consistent schedule indefinitely, I think my symptoms would continuously improve. The one thing that  does remain a struggle is my personality, I still do not feel like im as "awake" as I was pre strep, sometimes it is still very difficult to talk. My brain just stays at flatline. I used to talk a lot more and joke around a lot and everyone thought I was hilarious (which is still there, but not at all like before. I used to keep track of my jokes I had so many). Its coming back, maybe after this coming visit to Kansas this will begin to take a large turn for the best. Im praying for my body as an entirety to heal and function properly (not just function "enough"), Im praying that my brain fog will be lifted, that I will feel completely like myself again and not just a "part" of myself that survived a war, and Im praying that I will be given the energy and stamina to feel GREAT after this coming week all the way through the school year (or further). Last time, my doctor told me I had near miraculous results with how quickly and significantly my test results improved for the better. I am praying that this will be gloriously repeated.

How am I doing on making up for the lost time I was in hiatus?? I told you, thoughts are in there!!

Long Hiatus

I Forgot
Ok so I am guilty of what many bloggers all do at some point in life. I forgot to sit down and write on my blog.
Ive been writing this blog for years, Im a bit shocked it was so easy for me to just disappear like that. E texted me this evening and asked me if it was a good thing that it has been 5 months since my last post. I had NO idea it had been that long! Not in the slightest. A whole lot of things have changed since February. Mostly for the better!

Okay so first things first. I finished another semester of school successfully. College Algebra included. That alone is a gift from God LOL.
I decided to do two summer classes this summer, Theories of Psych and Social Problems. Both have been rather fun and light classes to do during an online summer semester. I like the 1 class per month setup, im not so rushed to get things done. I just have my dedicated amount of time to spend on each class 6 days awake, but short amounts of time so I can actually ENJOY the class a little! I remember when reading was rocket science a few years ago.
Sitting down to read a book is still difficult, but for school I can do it.

Second! I went to see my Kansas Doc in March. WOW. Life has changed a lot since then. He started me on some new things for sleep which have made a significant difference in the quality of my sleep. We did the standard work up, I have it all written down and I will post specific details on it all soon.
My quality of life sky rocketed after this last visit to my doctor, like record breaking. Before I went to the clinic I was really starting to wear down again, feeling very flatline and tired. Not necessarily depressed or anxious, just run down. But I was going to the gym every so often and pushing myself, trying to get into the rhythm of exercising and exerting physical energy. My body had all forgotten what intentional exercise was after all these years, 13 years old was when all my formal exercise of any sort ended. Now I am 21 and I can do it again. Some days I can some days I can't, but what has made life different is the days that I can are out numbering the ones where I can't. I do still have limits, I am really pushing getting to bed earlier. I HAVE to recover and not over do it in my daily life if I want to be able to feel well and be able to exercise.
The first  two months after my March visit with my doctor I felt GREAT. Sure I still had bad and sucky days, but I was going to the gym 3-4 times a week for the most part and I finished the last half of the school semester. School, gym, and work. Never thought I would see the day.

Quality of life is doing much much better than in the past. Depression creeps in every so often, when it does usually I can take a look at something I had done in the last 24 hours and pick out the cause. Chinese food and MSG, WAY over doing it with working too hard and not resting, under eating-depression guarantees for me. Every time without a fail.

Anxiety. Heres a word that I, at one point in my life, had no understanding of. No comprehension of the effects that this little disorder could have on somebody's life. I had no idea anxiety held the mold to completely reshape a persons life and personality into a form previously unknown. This anxiety thing isn't for sissies! I had no idea how anxious and on edge I was all the time until it disappeared...
Thats right. I dont think I have had anxiety in months now. After the last visit to my doctor the anxiety and unhinged stress slowly started melting away and releasing. Like a wound up rubber band slowly popping itself free until no tension was left.
Who remembers when thats all I had to talk about?
If anxiety does NOT return with the onset of the new school semester, I think we will have truly witnessed a miracle. Even if it does return, I don't think severity will ever reach what it once was. Looking back about two summers ago when it was in its peak, I think I should have seen a psychiatrist and gotten some strong medication or something. I dont think I even almost recognized how severe it was. OR how strong I was to resist it during that time. I am so thankful that God kept me strong and I never fell victim to feeling sorry for myself or giving up.

Work! I am still at the same office working the same job. During the summer I work full time, which my dear bank account is so grateful for. Come this very full semester of college next month, my bank will shed a few small tears when my hours cut back.
Some things even at work have changed, Ive become much more social and have had much more bonding time with my co workers. I love them to pieces.
Earlier this year the problematic coworkers that all of us were bothered by (11 employees, 2 problematic, not kidding when I say EVERYONE) are now GONE. They are still employed by they are working from a distance, out of our space and out of our way! They're happy not being in the office being social (one of the two has a social disorder and regularly ticked people off) and we are happy having the space back.
I had forgotten how much I enjoyed my job. Some evenings I dont even want to go home, I actually think I rather be at work with my work family than with some of my friends from school. I must be growing into an adult LOL.

I go back to my Kansas doc in just a few weeks, two I think. I have already gotten my blood drawn for the lab work. Just waiting to fly out. I am still taking a crap ton of supplements and I pray that soon I will be able to reduce things, I am not on as many pills as I have been in the past but I am still choking down a fist full morning and night. I dont even ask that I have to discontinue them all. Just some. Pretty please
I have begun to slide down again on energy compared to what it was after my visit in March. I changed one of my adrenal supplements and it made a big difference and progress started coming back. I am looking forward to my upcoming visit, my baseline now is a mile higher than ever before. I have never gone into a week in Kansas, not anxious and in pain, never ever exercising, never working hard. Its almost always a downward spiral my doc has to pull me from.
The only symptom I would say is truly "returning" is my brain fog, which I have fought with and fought with for almost a decade. Again, if I could sleep am 8 hour night every night, my brain health would probably be out of this world. Sleep quality has gotten great, amount of hours is still rather lacking and not ideal. Ive noticed lately Ive been garbling my speech a lot more and I lose thoughts and sentences, so I know its coming time for a tune up again. I am glad this coming visit will be more of  strong jump start or maybe even a slingshot into feeling normal again, rather than my doctor pulling me up by the Grace of God from the pits of disrepair. He's going to be so shocked when he sees me next time.

I am still trying to push my fitness even though my energy has been waning a bit. I have gone to the gym twice this week. I am really trying to eat more, I haven't eaten a satisfactory quantity on a regular basis in years (probably the whole time I've been sick). Its time I quit starving myself and I make food a higher priority. I still don't enjoy food a whole lot or enjoy eating. I notice I can trick myself into eating a lot more at work when Im busy compared to when Im home doing other projects (read, I forget to eat at home). I have found a protein shake called Vega that I can tolerate, so I have been mixing it with some frozen fruit and ACV, creating what is now my breakfast and dinner. I learned protein shakes before bed drastically help my sleep quality. With these results, doing the shakes has become second nature. I mix them with fruits I like plus some kale or veggies, then heavily dilute with coconut milk to thin it out. If I make the smoothie very thick it will hurt my stomach, I still have to watch it with food. Hard to digest solid food makes my stomach feel full and painful for a while. MUCH better than it was in the past but it is still an issue. If I dilute my smoothies down and take digestive enzymes, the problem is better. Maybe my hunger (lack of) issue will be what begins to improve next time I go to my doctor.
My goal is to begin gaining weight, 6'4" and 136 or so LBS. Its time I look less anorexic and have more reserves. People who have a healthier body weight have a stronger immune system and are less likely to get sick. Thats mah goal here!
Since starting with the gym I have gained zero pounds since February. I took a look at my diet and realized how little I was eating (realized...again) and how lacking in protein it was. This week I started the Vega instead of the other vegan protein I was doing, the Vega is a bit higher in proteins. I still need to bring up the calories and nutrients as a whole. But this eating thing isn't easy. I have noticed a difference since I started doing protein shakes 1-2 times a day a month or two ago, my energy has become more consistent and holds out for longer.

In my more fun side of life, I bought a 74' Alfa Romeo Spider, it has become my baby. Its a cross between a project car and my own daily driving car. It was a solid driver. At first. I decided to drive the car to work one day, the thermostat stuck and overheating the engine...blowing the head gasket. This wasn't a bit deal, it was easy to fix this. While I had the engine torn apart I replaced a lot of other things while I was in there, thinking I was making my car more and more reliable (in theory I did). Well once the head gasket was replaced I took the car on some test drives around the neighborhood, honing in the carburetors and getting them adjusted (look, I know im supposed to be  millennial but I want to learn how this stuff works LOL). Aaaaaand a little 10mm nut came off a carb bracket, and went right into the engine. Thats bad. Whats worse, I did not realize that had happened. I eventually figured out the reason I couldn't adjust the carbs was because one cylinder had sucked in the nut and had become severely damaged in the head. I discovered this had happened when I took the spark plug out and saw the tip had been crushed, I knew this had to be bad. LONG story short. The head of the engine has been back and forth the the shop many times, with failed attempts to fix it. Now another head is being built for my car (I know most of my readers arent car people and this is just rocket science...BUT)and will hopefully be ready soon. Its taken about two months to get this far on this issue. The "new" head being built has taken almost a month to be refurbished from what it was, the shop hasn't been in what you call a hurry to get the job done. But if they do a good job, I can be patient. Im thankful it only hurt the head of the engine and didnt ruin the WHOLE engine. For this we are thankful.

I think this about brings everyone to where my life is now. Major symptoms-fatigue(could be worse), brain fog, insomnia, digestion.
Life problems-my car is broken.
But hey, all these issues are fixable and will be fixed in due time. Step by step progress gets made!

I missed blogging, truthfully I just havent sat down or really NEEDED to vent like I have in the past, but no that does not mean I will stop writing!

One Month Count Down

Back to Kansas! Spring Break 2019!

I have officially booked my next visit to see my Kansas doctor. This is the longest breaks in between visits I have ever taken since beginning treatment for Lyme. Some new things will be happening this go round.

For one, I won't be going to the Hansa Center anymore. I am going to miss that place, I thought it was one of the friendliest, warmest environments on earth. But its time for a change, my Dr. along with a few others left the clinic and moved to a new one of their own creation. Why? I don't know. I just know that even good things must come to an end and change doesn't mean for the worst. I am excited to see this new clinic and what sort of environment it has. I know the doctors have been hard at work to make their creation something to brag about and that there will be new therapies involved. 

When I spoke to my doctor on the phone a while back, he told me about some of the new therapies that they will be offering. Some sound similar and some are a new idea to me altogether. I can't wait until I can report back on my progress. Unfortunately, as far as I know, the new clinic does not have a completed website. So I can't exactly share too much about the new clinic, but my doctor assured me that they will be offering next level service. Im not too worried, my doctor has gone above and beyond for me from day 1 and whenever I get frustrated he does his best to come up with a solution. 

I haven't seen my doctor since the beginning of August, that'll be seven months in between doctor visits!!

Granted I had other things going on to support my system in the meantime. Like the clinic I visited in December, I'm sure that offered some benefit, though it was focused more so on brain than anything else. Plus the hyperbaric oxygen this month, but except for herbs and stuff I have put myself on I have stayed on the same protocol since August. Ive held rather steady at that. Some days I do feel miserable and I do hate the world, last week had a handful of those days. Other days I have some nice conversations with people and it all seems worth it. I try to keep my outlook positive. Not everyone gets to overcome Lyme Disease, some people dont even get to live with it. I have, through a lot of effort and tears and screaming and reading, have made it eight years. I want to be one of the ones to get rid of the disease altogether and never let my body feel this type of sick again. I plan on leaving my fragile and finicky constitution behind and rebuilding it for good. 

Last week I was talking to a friend of mine who I see about every week or two, she's had lyme and fibromyalgia for a few decades now. Her and I were talking about how we feel bad for the people who aren't able to seek any treatment or who dont know whats wrong with them, then end up killing themselves out of desperation to reach freedom from the misery. We agreed that it would be nice if we could just sit up and walk right out of our body, leaving it behind. I said it would be nice if I could sell my body, then buy a new one like you would do to an old car. She advised me not to tell to many people that I think its a good idea to sell my body LOL. Turns out that one sounded better in my head than out in the real world.

But there are some nights, the usual sleepless ones where my thoughts go round and round like a broken carousel, where I do think-what if I could just leave my body. Im very grateful for the body and life ive been given, but sometimes I dont really feel like im living in my own body. Its more like sharing an apartment with a few people, each one with a different mood. Too Tired to Care is my favorite roommate, Angry for No Reason is the one I try to avoid. On the good days when I feel happy and energetic-I feel totally different. It feels like my body is my own and I can do with it what I want. I dont feel so invaded or like im sharing my body with whatever deck of cards I was dealt that day.

This last week I started something new. I, of all people, got a gym membership for the first time in my life. I can't remember the last time I seriously thought I could start exercising, even if its just walking on the treadmill. Before the strep two years ago I was beginning to exercise again, but the strep knocked that one out for me and took my brain and my personality with it. God willing, maybe we are finally starting to get closer to the end of that. 

Its been a while since I've cried without provocation. I do still get set off easily and fall into depression, but it really only lasts a day or two then turns into frustration instead (or fades away altogether). It used to take days to get out of a dark place, or weeks. Maybe my next visit to the clinic will help launch my personality back into my head and out of the ditch its been sitting in. My joints haven't been in terrible pain either. My muscles do have their days, but overall minimal complaints, same with dizziness. Fatigue can still be a battle but I suspect that before long we will be able to get this turned around again. 

So really, fatigue, emotions, and insomnia are what are really holding me back. I think if I could sleep, my fatigue would dissipate. Maybe even disappear altogether. My emotions may be less finicky too. 

I am about to try a new sleep medicine, I am hoping that it will work. Its been a while since Ive tried a new drug for sleeping. Ill update on that when something comes of it. 

I haven't been back to counseling in a few months. I got tired of telling some man about my personal issues and then being told to draw pictures. I know its good and it does help. Ive even recommended it to other people. Its just not my thing. Sometimes it feels better to think about slapping the person that caused my emotional issue (that day) rather than draw out whatever Im feeling. I mean I dont ever slap anyone. Just the thought seems a bit more fun LOL

Numbness

What Would the Dr.Order?

One of the things I was hoping to accomplish with the psychiatrist I began seeing in December was getting out of depression. I know its not necessarily a fast process and I'm not done yet, but I was hoping I would notice a change on their protocol. I still feel numb all of the time, unless I'm upset. I can still feel sympathy and feel upset or grief, but I never feel like myself. Lately I haven't really felt like talking to anyone. Some of my friends I have just kinda blown of altogether. I don't feel like myself and its so frustrating.
Ive talked to Dr.psychiatrist about this. Her biggest concern is my irregular sleep patterns. Which I do agree, need to be fixed and they are causing issues of their own and probably making this depression or whatever it is worse. But Ive had sleep issues for over a decade, I almost don't even care anymore. I mean I do care, I would love to sleep and relax at night. But so far I've failed several sleep drugs and a dozen or so sleep supplements. Im not sure what magic results she thinks she's going to get. She talked to me about Belsomra, which my insurance denied. I said I might would try a sleep drug if it was different from what Ive already tried, but Belsomra being $500, not happening. Especially considering it has a strong possibility of being useless and ending up in the trash.
She's holding out on the HBOT as being a big deal and potentially solving a bunch of issues. Its made a difference, so I'm holding out that she's right.
I had a bit higher hopes that this brain specialist would be able to help a little more than it all has. Im not done yet, but I was expecting a bit more benefit to the cost$

I have had some stresses lately. A friend of mine (unsuccessfully) attempted suicide the night of the superbowl. I stayed on the phone with her during the matter trying to bring her down, I dont know if she even remembers it now. But it took a toll on me that night and the next day. I feel for her, I know what its like to be miserable. But...she would rather take her stress out on others than actually resolve the situation. And I can be one of the people she takes her issues out on...

Januar 26 was my 8 year anniversary of getting sick. That weighed on me a little bit but in truth I dont know what to feel, so I just didnt. Last year I was extremely emotional on the 7 year anniversary. I remember crying for at least a week or more, before and after the day. I just flat out could not believe that I was still sic, even with treatment, and still feeling like death. I think I feel better this year than last year, a lot of it is a blur so I dont really remember. I was doing the best year before last. I thought I was almost out of it.
Can I repeat that year??
What magic was I doing then?? I want to do it again.

Some days I do very well and I can pretend that theirs nothing wrong with me. Other days, I leave school, get in my car, and have to stay there a bit before driving. Some days I wake up and I feel like I have the world in my hand, others I don't even want to get out of bed.

I decided to add in Collagen powder to my daily supplement routine, helping address any leaky gut issues. Ive done a lot for leaky gut over the years but...thought this may have some benefit. Im also taking some lyme and parasitic specific supplements right now and I have for a few weeks. In the past I have felt worse when treating parasites, so maybe this is doing something? Walking blindly right now....

Slow New Year

My Mantra to Life-Just Keep Swimming

Well it so seems the beat goes on, im still here even though I haven't posted in a month. Theres some good to that.
I started hyperbaric oxygen three weeks ago, I have one more week remaining. This has been every day, for an hour or more. Its not one of my favorite therapies ive ever done, but I think I am getting results from it though. I have been a bit more alert since starting. A few other people have told me that my color looks better and that I seem more involved in what I do. So my prayer is that the results I get stick and they aren't temporary.

Ive had what I think is a fairly uneventful month. Running the same regular school and work schedule, running it on caffeine that is. I used to never drink caffeine of any sort ever. These days caffeine is whats driving me to function, I don't feel all that bad I just have no energy or motivation. I feel like Ive had my battery drained and life drained out. Yesterday was a coffee and stevia energy drink day, at that I had energy for half the day then went back to my normal steady crash. I still fell asleep at my normal time.
I attribute my recent worsening of fatigue to my lack of sleep. This weekend was especially rough for some reason. I just kept rolling even though I had no energy to roll with, I only do caffeine during the week so it shouldn't have been any residual in my system.

I found myself up late with my thoughts. In a surreality that takes me back to many years of staring out the window at the moon during the late hours of the night. I remember when I used to sit on my nightstand looking up at the moon dreaming of reaching for the stars. I also remember the less than pleasant nights when I would look down at the ground bellow instead, because it would be a much easier place to find myself landing rather than floating through the clouds.
The night is my peace time. I (usually) take my life off work and school and anything else I have going on. I used to read until I was too tired to keep my eyes open. Now my mind just wanders into its own realm. I think of goals id like to accomplish and the dreams I once had. I wonder which ones will become a reality and which ones ill regret never chasing. Its so easy to worry over things that are only relevant right now even when they seem to make up our entire universe. Afterwards is when I can look back and see how minute the subject was.

In this state of fatigue and frustration I have fallen into I have found solace in encouraging others. In my work I can help people and reach out. I can show someone that I can care for them and make them feel special. People in special circumstances appreciate it when you go the extra mile for them, they see it and they feel it. Making someone smile for real, not just a sympathy smile but a genuine smile, is one of the things that keeps me going. I know I am doing at least 1 thing right in my day, after all kindness is free
Though seeing how some people act you would think kindness came with a price tag only the wealthiest and most privileged could afford. I don't understand it.

I made one woman very happy a few weeks, I left her a surprise of encouraging words in her notes for her to find when she got home. I heard from her when she found it and she told me how much she appreciated it and how much she loved how caring I was.
I appreciated her reaction, I knew I was doing something that actually mattered. It wasn't mindless chatter or some material thing that would whither to the dust in a short time. This is someones life, someones presence on this earth. To me, that has a lot of value..
One thing I do not appreciate about this world is how much we are required to immerse ourselves into earthly material things, but we have to. Its our culture. Its our distraction from ourselves. Material is what creates the common bond to create a society.
Maybe if we had more hearts walking around and fewer price tags, we would place value on our friends, family, and neighbors. We all struggle with things in our lives. It just so happens to be that my struggle is my health, which seems to be an endless battle but it isn't. The end will come. Until then, I keep on working.

Even with how "well" I have felt over the last month I have still been weathering some personal issues, as I always feel I am. Im not sure why I can't move on so quickly or why I hold myself back, but I do. And as long as I do some of these things will continue to be an issue for me.
I used to cry a lot. Daily. Multiple times a day. In the car on the way to work. Lunch break. I haven't been anywhere near that type of emotional in a long while. I do wonder, if its because im over the things that made me cry or if its because Im too tired to cry.

Scrambled Eggs

I Had Great Weekend!
This weekend I flew to Missouri to see E and my best friend. E picked me up from the airport and helped me surprise my best friend friday night.
For two guys with chronic fatigue and brain fog we did pretty great I would say! He brought me back to the dorm from the airport and we dropped my stuff on his room. We went down to my friends room and he wasn't there, but another friend of theirs was.
So the other friend called my best freind and said he had hurt his foot and needed some help, that he would be waiting in his room for him. I waited behind the door and E sat in the middle watching for them to show up.
It didnt take too long for him to show up, E warned me he was about to walk in so I tucked myself further behind the door. My friend walked over to the guy pretending to be in pain and looked at his foot. I waited for him to start paying attention to the foot, then i yelled across the room "so what do you think is wrong with it??" and he freaked out! He couldn't believe I was standing there in his room, 600 miles from home. He knew I was coming, but he thought I would be coming a day later. The surprise was priceless, should have gotten it on video!

This was also my first time meeting E in person, making this weekend just that much better. I stayed in his room with him both nights, the second night my best friend joined also. We had our own little party going. Two sick guys pretending that life is good and another one whose just going with the flow. I miss them already.

Last night at one of the school events I had a massive panic attack. We were sitting in an auditorium, after standing in line surrounded by people for a long time. My nerves were frayed further than I realized. After we had sat down and the show started my mind went haywire. I tensed up and couldn't speak, my mind was running at warp speed, I couldnt communicate, and tears welled up in my eyes.
I was sitting between E and my best friend, and couldn't even tell them. I couldn't do anything, it was just all stuck in my head swirling around.
It calmed down eventually and I texted E, trying to be quiet. We had a conversation over text, then I passed my phone to my best friend and let him read what had happened. I was too fried to actually talk and the show was going on in front of us. They managed to help me a little bit and they offered to leave and take me somewhere quieter. I opted to stay because I didnt want them missing out on anything with their school and I didnt really want to acknowledge that I wasn't okay.

I am getting very tired of anxiety or panic or brain fog disrupting my ability to be around other people and enjoy life. I dont understand why I can't just talk to my friends around me. I dont get why I can type out emails and texts when Im alone and be fairly cognizant, but when im in a crowd my mind turns to scrambled eggs. I dont want this to continue. It has been going on almost two years now.
I want to be able to feel excitement again and enjoy life. I feel like everything do is just a short trip away from the bed, with the bed being the most enjoyable place I have. I like being out with my friends and doing activities, but its become harder to do that. This is normal for the wintertime.
I hate this trapped feeling. I want to get out and go on adventure, I dont want to spend my life doing what im doing. Its getting old and I want a change. Im praying the change is sooner rather than later.
I know right now part of the problem is that I am tired and sleep deprived, but I never recover when I do sleep so it almost doesn't feel like it even matters.

UGH. I had done well for a while, I had some strength last summer. I was still an emotional mess but I had more strength. I told myself I could go longer without seeing my doctor. I think that may have been a bit too optimistic. I think my protocol at current is helping prevent too much of a backslide but I dont think im gaining progress.

In other news I should be starting the hyperbaric oxygen soon, which was recommended by my new psychiatrist I saw last month. She believed that it would make a big difference. I sure hope she's right.
Everyday in an oxygen chamber, thats dedication I tell you!

What Will 2019 Behold?

In A Search
I often lay awake at night dreaming of the future. I am constantly searching for something, I feel like I am working hard with minimal satisfaction. I cannot find what I am looking for. I love other people and spending time with other people when I feel well. I love helping other people, that cn bring me satisfaction but even in the end I ask myself, was I missing something? What could I have done better?

I spend 98% of my life thinking. Work, school, and friends are the primary things on my mind. I love my job and the people I work with. I love how I can be involved in these peoples lives and I learn so much. But sometimes I ask myself, am I missing out on something because I have become too comfortable?
School. I constantly dream about what going to another school farther away from home would be like. All the time. I hear people talk about how their time in college was the best part of their life and they made great relationships and learned so much by living on campus, all these great things that I am looking for
And I wonder, where should I be searching? What should I be doing? I ask God almost daily-what next? Am I doing what I need to do or am I becoming stagnant?
In the moment I usually feel stagnant, looking back usually leads me to see what the positive in the stagnancy can be.

Lyme has created so much indecision in my life because I cannot gauge if I will be able to do what I need or not. Im doing well in my current schooling and work but towards the end of the semester I am worn out. Its hard. I have to really push myself to do as well as I do in my schooling. I am doing alright in work but I am not exactly excelling like I want, there some further courses I could take and move up in position but I cannot bring myself to do it. I just can't and I dont know why.
Its a very delicate balance to maintain what I do and I KNOW if I do that 1 extra little thing that was just too much for my body to handle. My body tells me about it, sometimes for days.
I want to branch out. I feel like I need to branch out. I want new experiences in my life.
But when I crash its always hard. When I crash I usually regret everything and I feel as if I am being suffocated by stress. I want to do SO much. I push myself to do a lot, I hate being bored. But sometimes my body can't take it and I am afraid to play around with changing schools for fear of failing.
Its one thing to fail at work for a few days. They know me and they know if im not doing well, its ok, I will be back to normal soon. School isn't so forgiving. Either you pass or you dont. Theres no leeway.
And I just can't bring myself to take myself away from a place where I am (slowly) succeeding.

Tonight I did apply to a new school. I am waiting to see what happens with the application. The school is a bit on the exclusive side and at this point I would be a transfer not a new student, I do not know how great the odds are in my favor. This school is smaller and it is a Christian environment and I feel like I have potential for success here. I do not know that. I could be entirely wrong. I dont know but I felt pushed enough to apply. Cant hurt.

I visited a college a few months back. I had been accepted and I could have chosen to go this January. I could be preparing to move right this minute and start a new life. I just couldn't do it, I didnt like the school. I didnt meet anyone I clicked with and I wasn't really impressed with much. The school was very very nice and clean. The food options were also plentiful which is good for someone like me..but I just..didnt feel led. I didnt see, hear, or experience anything that made me say THIS IS IT. No.
And it frustrates me because I do not know where to search. I pray often but usually it ends in my mind just spinning in circles on what I want to be doing or what I would like to feel like. My dream isn't to stay up late every night writing down my frustration because I can't sleep. I want to feel like I am progressing and excelling, and I just dont get that feeling....

Earlier this week I felt so rough...I just stayed in bed all day. I got up to take the dog out and make a sandwich, that was it for the whole day. I felt so lazy, even though I had things I could do but I was just too worn out. Its been a long time since I have felt that bad, where I just couldn't get up and do anything.
This happens during the winter. Its cold, raining, and dark. How can anyone be motivated in this?? Surely there is a way to work around this and we just haven't figured it out yet. I dont know, these are just the thoughts that keep me up at night.