Who Am I Now?

Who Am I?
I feel like I do nothing but struggle with my identity these days. Like I am stuck between a rock and a hard place. I have so so many things I would like to do with my life, I want to go on adventures, I want to meet people, I want to take on more projects, I want to take more classes in school, and most of all I would like to rediscover my faith. Its been so long since I have felt or acted like my old self. I often wonder whether I have changed because of growth or changed because Ive been taken over by grief and anger.

I miss writing positive things. I get to miss that a little less today, because today I am going to be positive. Life sucks. People are mean and self centered. I do not think I have found anything that I can actually rely on long term. Car? Breaks eventually. House? Things leak, break, or even get destroyed. Friends? They leave or change, or I change, sometimes moving different directions in life. Family? Oh don't even get me started, next! Church? Again with the people...
Okay Okay im going to be positive now.
I haven't posted at all this month because I have been doing well. If I hadn't become so pessimistic I would even say I am doing great. Fear is what stops me from saying I am doing great. Im going to change that. I am slowly going to get rid of my fears.

I bought a new project car last month. A completely sad and worn out old car. This poor car, its older than I am. It has not been loved well in a long while. Its a pretty blue, 1989 Maserati. I know what you are thinking, Maserati? As in Ferrari's little brother? Those expensive sports cars that are never actually spotted in the wild? Yep, its one of those.
This little car is a 4 seater sedan with just over 72K miles on it. I bought it dead, for a good price. No start, no lights on the dash, completely dead. But me and the sad little blue car have bonded. I know what its like to be the hidden gem in the crowd that just needs some extra attention. This car was one of the fastest cars of the 80's, especially for a 4 door. Its a cute car, I have been giving it my attention. A lot. A whole lot. In fact I think this car has successfully taken over my life.
On my first day of ownership I fiddled the little car back to life. I did something during my switch jiggling that struck a chord in the old thing. It lit up again. Here I was sitting in my driveway, in the driver seat, watching the rain come down. I thought ok, lights came on, lets start it. It took several tries and lots of encouragement and it started up. I put it in gear and we set off on our first journey together. I drove the car down the driveway, around the cull de sac, and back down the driveway. I thought whew! It runs after all! My life working on this car just became easy. Keep in mind this is still day 1 back in August. I was very wrong. I went to start the little blue car up again later, didn't go so well this time. I tried and I tried, I just could not get a start. So under the hood I go...straight to the oil. What I see? milky oil. My little maserati has a blown head gasket. Good news is I bought the car for a deal, so head gasket set was figured into the price.
The car is still parked in the very spot I first parked it in when I found out she wasn't going to start again without major engine surgery.

I have worked extensively on the car. I have put an extreme amount of energy in the car. I managed to make myself proud at how hard Ive worked on this project. My energy has held up for the most part, I am in an energy lull now but its because of some sleep issues going on. I think I have put over 80 hours of labor into the car, possibly more.
I have been successful. I took the engine apart! Never done anything like that before in my life. But I did it! I took it apart, replaced many worn out bits. I have even got it resembled, it'll even start up! The car is still protesting me though, she cranks up ok, but the massive coolant leak spraying under the car dictates that I must turn the key back and pull it out. *sigh*
But Im close. Next time I have a full Saturday to dedicate to this project, I may just get to drive her farther than the mailbox.

Lyme, at one point in my life, would have never let me think about A. Buying a car. B. Buying a broken car. or C. Buying a very broken car that needed a top end engine rebuild. This is part of my success story. I know that without a doubt my body couldn't have done this two years ago. In less than 6 weeks I have disassembled and rebuild the top of the engine, myself. Its hard labor, it requires may brain to work hard and it requires my body to have energy. Things I tend to run low on.
I am proud. I am thankful. I am going forward. Life is becoming real again.

If the car caught fire tomorrow and burnt to a crisp, id be ok. I have more satisfaction in myself than I have had in a long time. This car and I are working on discovering our lives in motion again together.  Actually this car has had more down time than I have, according to carfax it was off the road and unregistered from 2001 to 2014. 13 years off the road, sitting somewhere. Thats a part of the story that I dont know unfortunately.
I know that with enough attention and fine tuning, this car will be a roaring beast again. Today may not be that day but so what? Im not going anywhere and it can't go anywhere, ill get it going. It'll be fast, it'll be strong.

I did not know I could enjoy hard labor so much. Ive always enjoyed working hard with projects but I do not think I have ever undertaken a task that is as physically, mentally, or as financially taxing as I have until recently. I love it, many days I hate it but its only because I become impatient, I am learning to enjoy the ride. Its so important to learn how to spot progress in life. My sister and I were talking today, both of us are doing psychology based majors in college. She was telling me about how  learning delayed gratification young in life can create for a much high chance of success and happiness later in life. I don't doubt that one bit, I would say the things that have brought me the most joy in life are the ones I have had to work and wait for.

I always remind myself that life is a battle worth fighting. Lyme is what taught me to fight. I may not get up and throw punches or roll some heads, but I can work myself through a stressful situation. I can find a solution, I can think creatively and outside of the box. Many people my age can't think outside of the box, they are only followers, not thinkers.
I still on a daily basis still feel like I am fighting with my soul. Tonight I just couldn't sleep, not a chance, none. Wide awake over here. I have a lot of inner turmoil. Anxiety is the name of the game, not sleeping is what rattles my brain. I have a long list of things I would like to do, but I am not really doing them. I am doing the car, yes. But its temporary. Im trying my best to bring up the courage to live on my own. On the days I feel human the thought is easy, the how, when, why, etc-easy. On the days that I have to look past my homework stack and car keys just to take up residence in my bed...not so encouraging for moving out.
I need to move out, I needed to about a year ago. I know it and I feel it. Unfortunately life just has not worked out for me to sow my own oats
Every time I think about how it would have been nice to have moved out, I look back. Looking back over this last year...gotta say, Ive seen so many blessings in being where I am.
One of my teachers from last semester and again this semester, has been one of the greatest encouragements. She has really taught me how to see myself. On the bad days I may not see myself in a good light but now I know how to look. Some days I can see a little more positive than I did before,
This teacher has really just been one of those great lights in my life.
I have had a few people over the last year like that. Not necessarily people in my personal life but teachers at school, people who have become my friends even though I never thought of them that way, people I meet through work. Even if I don't see what Im supposed to be doing with my life right now to bring the most satisfaction further down the road, I know I will be okay. Just because I can't see it today doesn't mean I won't see it tomorrow.
Thinking positive is something I am pushing myself to do more of. Every time im around positive people or I accomplish something that makes me happy I find I feel better. I dont mean an A on a test gives me energy and cures my insomnia. I mean I feel more comfortable in my own skin.
Right now my soul feels like it wants to jump out and go for a long, strenuous run. Of course that isn't possible, I just feel claustrophobic in my own body. Like my body is what is holding me back from doing what I want and need in my life. I know the day will come that I am able to utilize my body to its full potential rather than giving it careful attention just to maintain status quo.

Just because that day isn't today, so what?

Seasons Changing

The time for seasons of my life to change has come once again. School is starting back this week. My best friend is leaving to live in Missouri tomorrow. Another friend of mine leaves the day after, then my sister leaves this weekend.
I will once again watch my life become engulfed in school assignments. Life will get busy and I won't be seeing my friends very often. My best friend moving 10 hours away has probably affected me the most. He is the person I go to for everything, he's my support, my encouragement, my safe place, and of course the person I have the most fun with ( I promise I have fun and do normal fun things with my friends). Now I will have very limited access to him. I don't handle big changes all that well, I am already a rather emotional person these days. My emotions run their own way without rhyme or reason more often than not, but with my best friend leaving...I have been a mess.

I am taking care of my best friends fish now that he's leaving. Last night he brought his tank and his one fish (Sherman) to my house about 11pm. We got it setup besides one of my tanks and I now have the honor of keeping Sherman for a long time to come.
My friend stayed a while at my house because we knew it would be one of the last times we could hang out, maybe even the last before he leaves. I felt horrible, this last weekend has been extremely stressful. I worked a full day. No sleep. The usual human complaints.
It was so great hanging out but we did reach the point where I had a breakdown. I just lost it and started crying and thats all I could do. I couldn't speak. All I could do was just cry harder. I felt so pathetic, why is everything such a big deal to me? But my best friend was there for me. He hugged me until I could finally speak again. I was so worn out I couldn't stand up anymore, I think the first words I spoke to him were something along the lines of "I have to sit, I can't stand any longer". At this point it was after 1AM, he needed to go home but I was delaying it with my emotional neediness.
He held onto me longer and told me he would walk me to my room to make sure I could walk up the stairs alright without blacking out or collapsing (that has been an issue this summer, which he has first hand witnessed).
And because he's awesome, he let me convince him into staying the night with me. So we both walked to bed and I got to keep him for the night. I felt horrible, I haven't slept well this weekend and ive been burning the candle at both ends, not a great combo for anyone no matter their health situation!
My friend stood by me and helped me through it. I couldn't have asked for anything more. It wasn't planned but hey, I needed someone and he wanted to be that someone. He dragged me on to bed so I could finally relax and get some rest for the first time in several days.

It means so much to me to have someone there for me like that when  I get sick. I hate being alone when my mind and or body decide to plummet into a black hole. Just having a friend there for support takes a lot of the pressure and loneliness out of the picture. Having my best friend there for me is even better. That meant more to me than anything I could dream up, its not easy being the outsider in a sick persons life but he knows he to help me out.

One of the things that made this weekend so stressful was the death of my grandfather. Friday morning my grandmother called my mom to inform her that she found my grandfather on the bathroom floor, dead. It was a total shock. He was not in bad health. They were supposed to be going on a cruise tomorrow for their 60th anniversary.
This last weekend instead was used to plan his funeral, which was today. His death was hard for all of us to deal with. I think we are all still in shock that he is gone.
We had some awesome friends help us out and bring us all a meal for after the service. The family came back to our house after the service and our friends had all the food and tables setup and ready to go, I don't think we could have asked for anything more.
Nonetheless, this has been a weekend of sudden and lasting changes. Emotionally I am worn out, physically I need rest. This time, its not just me but the whole family thats in the same boat as I am.

Upon Exiting Kansas

My most recent trip to Kansas was one of the best and unique visits ever. Some good and some bad.
The good- I gained progress, I never felt absolutely drained dead of energy. I even went to the zoo! It was freaking hot so I did feel rather ill after that, but only for a little while. I have never had the energy to even think about going to the zoo or anything of the sort, this is monumental.
My doc didn't need to put me on a boatload of supplements this go round! I am on what an average person would call a lot of supplements, but to another lyme patient, not bad at all. I am also on a lower dosage of supplements, most of them are once a day! Im praying this does not change.

I was even more social than I have been in a while. Usually I am in and out of the clinic and I don't spend much time socializing, the siren song of the couch back in our hotel room is too strong.
One woman I met this last week I had met before. She complemented me on my shirt then said- Hey I remember you from last year, you are the one who was getting sicker and sicker instead of getting better. Then she spoke to me about what all had happened to me. She met me the week last March when I was at the clinic that I became so ill and went downhill, without ever fully recovering. I was impressed she remembered me, I remembered her face but that was about it. I was so sick that week...all I remember was the misery and bone crushing pain.

The bad-
My doctor and a few others left the clinic. I had no idea that this would be my last visit with my doctor! I got the email from the clinic about my doctor not too long after arriving back home. I was assured my doctor will continue in practice with the same level of care, just not at the Hansa Center. I am very grateful that I am feeling as well as I am feeling, because I do not want to have to go back for treatment anytime soon with such changes taking place. If I choose to go back to the clinic ill be assigned a new doctor, or I may wait a while and see if my doc shows up at another practice. For now, im gonna float in limbo.

Finishing the Week

Im sorry I never followed up on the following visits like I usually do day to day. I just didn't feel like putting energy into writing, but I did feel very well the whole week. Pretty much for the first time ever.

Day 2!

 I did not sleep so great the night before, i was awake most of the night because I just couldn't sleep. OCD and negative thoughts were racing through my head, sleep just doesn't happen on those nights. Plenty of crying yes, sleeping? nah.

So I talked to the doctor about those things and sleep and brain issues.
First off he put me right back on several things he had taken me off. So my break off of a ton of supplements was short lived.
He replaced 3 things I was taking with 1-2 things instead, this new stuff should work better than what I had been taken before. They also should not be permanent, they should be working to fix the problem whereas the few items before were as needed (which became as needed everyday).
We also worked again on neurotransmitters to replace something else I had been taking. Neurotransmitters are used for brain power, sleeping, waking up, thought control, concentrating, basically anything and everything your brain does. My neurotransmitters aren't in the greatest shape which could also lead to me not feeling hungry like a normal person would and it would also leave me awake at night.
We primarily worked on dopamine, serotonin and GABA plus one of the adrenal hormones called norepinephrine.
Dopamine is your brain power, no dopamine = no energy to think or become motivated. GABA is what turns the brain off at night to sleep ( chances are if you have racing thoughts at night or even all the time, not enough GABA in your system). Then Serotonin which is for mood control and its the natural anti depressant your body makes, at night your body turns serotonin into melatonin to sleep.
Since I don't sleep, I have racing thoughts, brain fog, and sometimes absolutely zero motivation I thought these things matched my symptoms rather well.

Unfortunately this wasn't as easy to correct as the eosoniphils on the first day. He added in 6 new things for me to take, two of which replaced 3 things I had been taking. So a little bit of consolidation did happen, just not as much as I would have appreciated....

Day 3!
I slept extremely hard last night and have felt pretty well all day today, which is unusual while im here. This evening I even spent some time out by the pool which I have only ever done once before, usually in the evening I'm too tired to get off the couch. 

In my doctors appointment today we actually ran short, we ran out of problems to work on so I was finished with the doctor early. Not the worst problem to have!
My doctor spent most of our appointment doing chiropractic work, adjusting this and torquing that. I am much less tense after all his beating around.
As far as treatment goes, only 1 new thing today. Through his testing he found an issue with my gut+brain connection.
He found an issue in my amygdala, which is the part of the brain that stores trauma. In my gut he found an infection called toxoplasmosis, which is typically carried by ticks and cats. It can be opportunistic.
In this he determined what was happening between my stomach and brain was that the infection in my gut was setting off a traumatic reaction in my brain, working as a signal to tell my stomach to not accept food. He made a homeopathic remedy to get rid of the infection and to balance out the disconnect, so in theory this could also be a big game changer as far as how i get to eat.
When all these new things start working and getting into my system I may finally be able to eat again. 

Day 4-5

Yesterday and today were both easy doctor visits. Both were a bit on the shorter side.
Yesterday he used something called neurophotonic therapy. He's used this therapy for me before on my first and second visit to the clinic two years ago.
Basically this therapy is a test and a treatment mixed into one. The test is to check how money body processes different wavelengths of light, he used red, blue, green, yellow, orange, and pink. While my body body is processing the light, the doctor runs his tests to see which nerve signals misfire. He finds the misfires and treats them with homeopathics, single doses in office.
This is one of those things that sounds much more complicated than it is, but it does have a profound effect on the nervous system and how it functions. I do not know enough about it to give a detailed explanation, I may have posted about it on visit number 1-2 a few years ago.
So yesterday I did not receive any more remedies to take home.

On the last day we did neurophotonic therapy again along with some more work on my gut.
He found that my spleen was not functioning up to par, which could also affect digestion. He found a couple other minor imbalances with my brain and stomach on top of the spleen, nothing terribly profound though. He gave me two new supplements to take home this time but these are chinese medicine herbals. So for anyone who knows about chinese medicine you'll know these are very strong and very different from standard homeopathic medicine and regular over the counter supplements. Any one whose taken them before can also tell you, they don't taste so great either. Kinda like mixing dirt and alcohol, add in some bitterness, pretty close to what this stuff taste like.
The neurophotonic therapy today was mildly different from yesterday, today he focused on neurology for sleep. So today when he did this therapy he focused on balancing out brain waves so that I will sleep deeper. He had me take a bunch of single doses of homeopathic to correct these imbalances, nothing to take home though.

I have a long list of supplements to take for the next two months but once again, even though its a lot everything is at a lower dose than in the past. Most of my supplements are just once a day instead of twice a day and at they, most are either 1 dropper or 1 tablet instead of multiple. Even though I still have a lot to take it definitely is not in the same way it has been in the past.
Our goal is for me not to need to go back to the clinic until March next year. My doctor thinks I can make it that long with how I have been progressing. 

Overall I am feeling much much better than I have been after my last few visits. I actually had energy to use once I made it home this evening, I normally have none left after a long week at the clinic.

I had a lot more energy to work with this week and I have felt more stable than I normally do after treatment. I still had to rest a lot but not as much as in the past.
I am pleased with the results from this visit. Very pleased!

First Day

Im back at the clinic! It was a strenuous process to get here but hey we made it.
Yesterday was my first day seeing the Doctor again. We did the usual, going over blood work and test results then following up with some kind of plan. It’s all become rather routine at this point.

My blood work made some excellent improvements in some areas, Iron and ferritin are both back in range for the first time(maybe ever), vitami. d is great, blood cells are normal, and a few other good things.
Albumin is high, alt is high, easoniphils haven’t budged, and cholesterol still doesn’t want to improve .
We think we may have an answer to some of my gut issues though. My doctor thinks I may have easinophilic esophagitis, which would be an over abundance of easoniphils in my throat and stomach. Which would be why swallowig, eating, and all of that is very difficult. We believe it may have been strep induced at some point in time. Causing an autoimmune type reaction.
So yesterday he took me off all of my supplements and put me on just one thing. It’s a homeopathic for correcting easoniphils specific.
We’ve done parasite treatment in the past and allergy treatment, which are usually the causes of eosinophils being elevated. This time we are trying something different, treating the response instead of a potential cause.

In other news, I am not showing any signs of parasites this go round and I didn’t last round either. So seems to be I may have made some standing progress in the wormy department.

Cellular hydration was something else we talked about yesterday and will be working on throughout the week. Something showed up on my blood work and I’m my symptoms that made my doctor think I may not be absorbing water like I’m supposed to, even though I drink like a fish.
This could also be contributing to my dizziness. Cellular hydration isn’t something I’ve spoken about too much, it’s not necessarily an everyday sort of thing. But in the event of an auto immune disease, hey anything goes.

Into the Valley

Hi all, im sorry for being so quiet lately. So so so much has been going on in my life over the last few weeks.
Work has been crazy busy, which is great. My energy has held up and I've been able to stay active through this time. I love being able to do that, this week I've even worked through lunch all 4 days this week. I don't do that often and usually I appreciate having the break but this week, the opportunity was there to keep going and I wanted to take it.

Tomorrow is the day for me to fly back to Kansas so that I can see my doctor on Monday. I think this week will bring great results. I have high hopes. But, as the usual goes...I will feel worse before feeling better. This thought is always daunting, I never know the severity of whats to come. Ive been doing so well the last few weeks I almost hate to mess with it, but at the same time...on a scale of very sick to normal human function, I'm still below normal human function. Dizziness, heart palpitations, nausea, headaches, and even nearly blacking out have been normal symptoms lately. Ive dropped to my knees many times over the last few weeks because I all the sudden become too weak to stand anymore. Not good. So without a doubt I need to see my doctor.

The uncertainty does scare me though. I don't like being able to look at my calendar today and say 3 days from todays post I will feel significantly worse than I do right now. It just seems wrong that I am literally planning for myself to become sick, because treatment will have begun.
I don't like being able to look on my calendar and say from Tuesday on, ill feel sicker than normal and its just gonna stay that way. Same for Saturday, the day after flying home I always feel worse and end up in a funk. I just...I don't like that feeling.

I have had several tests performed recently. Full autoimmune panel and a full adrenal and hormone test, all came back well. Adrenals are just barely out of range upon waking and my DHEA is a little high, other than that I passed everything with flying colors. Only if my body knew how well I was doing, that would be great.

I have a lot more to post, but unfortunately I also have a lot more to pack so I have to sign off for now. Ill be posting more this week to keep you all updated on my week with the doctor.

Snow Globe Syndrome

Do you guys ever feel like you are living in a bubble? I sure do. All the time, more so lately than ever. I just cannot figure out when I walked out of reality into my own little bubble for one.
I feel like I can only see whats going on around me, never actually touching the outside world. I know others can see me but its like no one can get any closer than just out of reach.
I call it Snow Globe syndrome. I can see out into the real world from my own bubble and every one else can see in, but theres this thin layer that creates a divide between the two world. Each world just barely out of reach from the other.

I often find myself on the sidelines watching others. I watch what everyone else is doing. I know whats happening its right in front of me after all. I don't understand it though, its a world out there that I no longer comprehend. Its just me in my own little snow globe, watching my friends and family do regular human activities bringing them enjoyment. Ive reached the point where I don't even understand how some activities can create enjoyment, like whats the point?

People have tried to reach into my little bubble and I always reach out. I hope that this will be the time that someone rescues me from my own little world. Unfortunately it usually ends in me getting dropped back into the snow globe even rougher than the time before. Its like I can reach so far and just start to feel the other side, what its like to be normal, then I slip and fall. Back to the bottom.
I don't know what to do, Im not sure who to reach out to. Im sure other people out there feel like I do, I couldn't be the only one. People feel alienated all the time, why can't we all understand each other better instead of pushing each other farther apart.

What will it be like to leave the snow globe? It has to happen one day, but when and how? Thats the question I ask.
These days I feel like I am just a sideline listener just trying to make it through the day. It hasn't always been like this and it won't always be like this. I just want to know how long it will be like this.