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!!

Guest Post from E- It Took Everything from Me

It took everything from me

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

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

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

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

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

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

-E

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

A New Blessing

Something New I am Grateful for

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Safety Circle

Familiarity
I have come to notice something else. Besides the fact that it seems tat I must constantly be analyzing myself, I noticed something new. It wasn't exactly new but it was one of those things where I had never put two and two together.
I stick in the same safe circle and rarely venture out, the times I venture out are the times I fall back into snow globe syndrome. Staring into a world I am not really a part of. In new environments or situations, even if I WANT to be there, I'm lost in space. I see whats happening around me as-if I am on the other side of a glass wall. Trapped. I can't speak. I can't act like myself. I can't reach out to others like I normally can. Im just stuck inside.

WHY??

I have familiar places which I do a better job of opening up and acting myself, sometimes just fine and other times still part way closed up. Work is a major spot where I am open and aware, it has been an everyday, familiar, and safe environment where I am very well liked. So its easy for me to be outside of my head.
These days I find myself talking to a smaller circle of friends, I just don't want to reach out like I used to. I don't really want to talk to just anyone or be just anyones friend like I used to, because usually that means I become someones else "safe person" who they can tell everything wrong about their life too, I can only deal with so much of other peoples lives. I am way too caring but also way to overwhelmed to take on a bunch of peoples struggles. In all honesty my best friend is the only one I really care to talk to and be around these days, he's my safe place. It doesn't matter how great or horrible I feel, we will find something to do and he doesn't care, because its okay. I don't have to strain for energy I don't have to maintain a conversation or get up from my seat to do an activity if I don't feel up for it. The problem here is he lives 13 hours away in another state. He is home this week for Thanksgiving break. Last night he came and stayed with me, he met me at work and I took him from there. He came and met my coworkers and saw my office for the first time ever! I was kinda proud to get to show that off. Then he came over and we spent time together watching netflix and talking, among other things. He stayed overnight and this morning I had to drop him off at his dentist office for an appointment around 8am, and thats it for my visit with him until Christmas break. He will be here for a few more days but his schedule is packed, I am however super thankful he made me a priority for this short visit.
I saw him three weeks ago when I visited him at his school, then in about four weeks he will be back for Christmas. So I don't have too long of a wait before my next visit (or at least I am trying to convince myself that isn't very long).
SO if you are still keeping track of my original topic, my familiar places are work and my best friend. Those are probably the two most comfortable.
Next I would say my other close friend who lives just down the road, their family has basically become part of mine. Then after that I would have to say my own home. In totally around 4-5 safe places/safe people in my life.
I find it very hard to create a new safe place, I just do not feel comfortable anywhere or with just anyone. I can't. I wish I could but I just do not know how to make it happen. Ive gone on adventures to new places where I would like to spend time enjoying life, but usually I fall right back into a snow globe. With the snow globe comes fatigue, brain fog, extra insomnia, and a few other extra cattle to weigh down the couch.
The current safe places aren't exactly the best. Work is work, its not my social place where I am out having fun and letting loose. I enjoy my job and all the people, we all share laughs upon laughs but in the end its still work.
My best friend is in another state, working very hard at school and multiple jobs. All that extra energy Im missing out on, he makes up for probably two fold with all the things he does every week. He is BUSY, we do not get to talk all that often and when we do its over text, rarely the phone. since August, I saw him for a weekend in October, and this weekend and November. Don't take this the wrong way, I am EXTREMELY grateful for this time. Because he's been gone our time together has been extra special. I cannot describe all of our moments together and how much they have meant to me. Last night before bed him and I prayed together, I miss my prayers with him.
It just leaves a lot of gap time for me, I need to have a safe person more than every so many months. And he doesn't need to be my only one either, there are people that care about me, problem is I just can't connect. I have another friend who I am super close to, she does her best to be there for me and she does a fantastic job. But again, I just dont always feel the same connection for some reason. I still go to her and she's an awesome friend. I love her to pieces. I just feel stuck in the outfield from society.

I want to go new places, I want to experience new things and meet new people. But truth is my cute little safety circle is where I am stuck. I sure hope my new psychiatrist can help me out, this isn't even like regular sick me pre-March 2017. Certainly isn't like non sick me, though that part of me is a vague memory these days.
I have searched and tried t find reasons on my own why I have such difficulty now. I think its depression related, I just dont get enjoyment like I used to. Its not easy for me to get into and absorb a conversation.

Hmmm the places Ill go when my body is ready

Emotions All Around

Greetings! I have good things to report this weekend!
I am spending the weekend with my bestest friend at his college with him. I haven’t seen him in two months! And it’s been a hard painful two months! I’ve missed him so much. Being sick for years made me realize that most people aren’t worth being friends with. People have no compassion, no real life goals, they lose their faith in God and become lukewarm. They just become so plain bagel, achieving so little in their life. Those people are so hard to be friends with, they aren’t real.

But not my best friend. He’s a human being with goals he’s working his tail off to achieve, he has actual feelings, he strives to be the best he can he doesn’t just settle for whatever is easiest. That’s probably why him and I get along so well! We are both hard workers and real thinkers!

I head back home tomorrow, which makes me sad. I like his friends here and I like being with him here at his school. I’ve only been here a night and I feel more at home here, in a strange bed and a strange place, than I have ever felt in my own bed in my own house. It’s hard to explain because I don’t know why. Maybe I just hate being away from my friend.

I don’t know when I’ll get to see him after tomorrow. Maybe thanksgiving.
I’m laying in his bed right now waiting on him to get off work. I have a special surprise for him, tomorrow is the 11th anniversery of his moms death. They call it Grape Day because synthetic grape flavor was her favorite. In commemoration they consume grape things that she loved. One of these things is grape soda, which my friend hates but because of his mom, he loves it once a year. So tonight at midnight I’m going to surprise him with some grape soda.

He’s stressed and upset out of his mind this weekend. Memories are hitting him hard. If I could take the pain away I would. I wish I could. I don’t want to see him hurting so badly. His mom was an awesome woman, she did it all. She loved everyone. And my friend has a lot of her qualities, which draw him close to the memories of his mom. It amazes me to no end.

So if you could all keep him in your prayers this weekend. He’s got the biggest heart I know, so when it breaks like this-it breaks.
I wish I could stay longer to comfort him.
I almost feel wrong for leaving tomorrow but I have no choice....

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.

My Own Little Corner

This weekend has been rocky and it isn't even over yet. My brain has been scrambled eggs. I spent last night feeling OCD and depressed. I cried in the shower because I didn't know what else to do. I still don't know what to do. My brain wants to keep upsetting thoughts in circulation and important thoughts forgotten. The sadness and loneliness was unbearable.
I started the intake process with the school councilor last week. I go back this week for something, I think i get placed with a councilor. Im not entirely sure how it works, I just know I have to go back.
Getting the process started was so uncomfortable to me, I had to explain to the intake councilor about lyme disease and why it causes me such hassles. I used to not mind sharing my story but with how I feel these days I feel like so...sick of sharing. It feels like my business, not someone elses. But I did it, nothing bad came of it. He didn't try to tell me anything about lyme, he did of course bring up the CD C and wondered why they didn't do anything about it. I didn't entirely appreciate how he asked me about it, im the patient not the doctor. Why on earth would I honestly care about the CDC, I have a long list of complaints about the CDC but lets be real, the CDC recognizes the Flu, HIV, Tuberculosis, and a ton of other diseases but can a person with HIV be cured? No. Would I ask a person with HIV about the CDC not being able to treat them? No, it probably get looked at like I had lost my marbles.
But its fine. Ive made it this far. I keep telling myself that its time to seek professional help, I have lost so much enjoyment in life that I know I would have if I could just think straight. At this point Ill even try anti depressants and/or anxiety medication, not long ago I would have said I would never take those meds unless it was an emergency. But its time. I think anxiety is part of the reason my eating has been so bizarre and why I never feel like eating. I think depression and OCD are why I can't enjoy anything and why I never feel like anything is good enough. Its gotta change.
Lately I have not been feeling that bad at all-if I discount my emotional turmoil. I have had some back pain, other than that I haven't been hurting much. Fatigue has been significant but because of the OCD and things I haven't been able to sleep...the last two nights, with the help of meds, I have been able to sleep deeper. Today I have for sure had more energy.
Heart and blood pressure symptoms have been an issue, they are probably the only ones I have that aren't related to anxiety or depression related. They could be indirectly though. I just know that if my mood was stabilized and normalized I would probably be feeling great right now, or even more often.
It is hard for me to go the councilor route though, I don't bond with just anyone, I don't feel comfortable speaking to just anyone, and my brain fog will keep me from being able to speak my thoughts clearly. I am going to try to push through it. Currently the only people who know I am trying to pursue this is you guys that have found this blog online, two friends, and my mom. Thats it, I don't think ill change that anytime soon either.

Last night something really triggered me. I was speaking to my best friend and he told me he probably won't be able to go with me to Kansas again this year. I am trying to go back to the clinic in either August or December, so theres time to plan out ahead. Or so i thought. I don't want to keep going through treatment alone like I am. I want and need a friend with me. It takes a lot out of me by sitting in a hotel room listening to the world around me go round while I watch some tv show that I don't enjoy. It makes me feel so small and worthless knowing my friends and family are at home living their life, making money at work, hanging out with other people, and all I can do is keep the hotel bed planted on the floor.
I hate it. It made me feel a billion times better having my best friend with me last visit. I wasn't uncomfortable and I didn't feel so alienated from the living world. I had a friend with me, someone there just for me to see that I was okay. I was much more stable and well feeling having him with me....
I don't want to go back to my doctor at all if its just going to be me staring down the four walls between clinic visits.
I don't even have the energy to go off and go walking or anything after seeing the doctor usually, otherwise I would try to find things to do but its just not that easy....

Its hard for me to find encouragement. Its hard for me to get out of my own head. Its hard for me to trust anyone. Its hard to feel the love from those around me. Its hard to enjoy anything. Day to day activities have just become a distraction between sleeping.

I sure hope that hamster is enjoying its vacation from the wheel....

I Miss My Old Lyme-Wait What?

Tonight the stress of this whole week has finally caught up to me. I miss the beginning of the week when I had some energy and brain power. I miss sleeping beside my best friend and having a companion. I miss having new test results to cheer me up about my future. I miss the peace I had.
I am back home from Kansas, we flew back home this afternoon. Flying always makes me tired no matter how long or short it is. I kept myself well entertained on the plane with Amazon Instant video, I think I have watched every episode of Top Gear UK ever at this point.
I held up fairly well but now that I am home and done for the day I am fried and emotional. I don't want to be alone. I am tired. I need to eat but I can't which means I can't take one of my new supplements, I don't want to skip doses so soon on a new protocol.  just can't do it tonight though. I am too tired to do anymore.

Whats ridiculous is that I am always too tired to do what I want to do but I am never so tired that my brain cannot run wild. I have never been so tired that my brain would stop being paranoid, stressed, or alone feeling. I spent days this week with my best friend, the only time he was more than 5 feet away from me this week was when I was in massage. He was beside me through everything else, my dr knows him now and knows how important having him there with me was. In my life right now, going to the clinic and meeting my doctor is about as personal as you could get with me. 
Having my best friend there kept me sane. I never went stir crazy in the hotel room or felt alone or trapped. We kept ourselves fairly entertained with netflix and movies. 
We even went to the junkyard on tuesday and found parts for my Volvo. I wouldn't have done that without him being there. PS if you own an old Volvo parts for them are few and far between. This was the only junkyard out of the 9 i called that had one car with two parts on it I could use.
In the evenings we would go to Happy hour in the hotel lobby to get out of the room and be around other people. He would get a soda and I would ask for a soda still in the can, then I would keep it so my friend could drink it later. 
We kept from getting bored while just sitting around for most of the day. We even explored Target for a little bit once. 
This made all of the difference in the world for me, I really needed a friend with me. The last few visits to the clinic I have gone stir crazy from sitting around the hotel room but having no energy to do anything. I was relaxed this week. All was well in my world.
When my friend left yesterday morning and I was back to the usual routine, the stir crazy came back. During the evening I was alone in the room for about an hour. I packed, cleaned the kitchen, and paced the room because I just could not just sit down with my thoughts for another second. I finally gave up and found something to watch that worked good enough as a distraction. But it was hard. 
This morning I had to keep moving because of the tight schedule of checking out of the hotel, going to the clinic, then catching an airplane, so I have not had time to think until now.

Until last year when I broke I never needed constant support. I never needed my hand held. I was strong. I was lyme strong. I had lived through burning and searing pain, nightmares, days without sleep, days without friends, nausea, I fought it and I would win. 
Now I never want to be alone, I can feel alone in a crowded room, I want someone to hold my hand and walk with me through this. I do not connect with just anyone, theres very very few people I feel all that close to or I trust. 
I miss how I used to be sick. I would be tired but calm, so no matter how horrible I felt I could just stay in bed watching tv. I could go get an IV and life would somewhat improve for at least a short time( i just had to make it through the die off period). In the hotel at the clinic I used to be okay with just loafing with the tv remote because I did not feel like doing anything. 
I would find something to do, text, read, blog. It was all good. I didn't necessarily enjoy how I felt or anything like that but I could make life happen with how I was then.
I can't always make life happen that easily when my brain goes out. The last month I have lived through pretty well. I mean school is going well, I bought a project car to fix up myself and sell(previously mentioned Volvo), sleeping hasn't been the hardest thing ever, paranoia has been on the low. 
I have had a few not so good moments where I over did it. One afternoon when I was home alone, I walked down to the kitchen to get a snack. Somewhere between getting food from the cabinet and walking to the counter I lost it. I cried and tears were rolling down my face, I was upset and angry, I felt alone and wanted help, it all came out of nowhere. I just fell apart in the middle of the afternoon on a regular day in the kitchen. That was a hard day. Since then I haven't had any major breakdowns until this evening.

Reading and blogging is not easy anymore. I have more thoughts to share than ever but I can't get them out because I am stuck in my own head. I have more energy to do physical things but I am still scatterbrained sometimes. I still slur things when I speak, sometimes I jumble a whole sentence into one messed up word. I don't like not being myself completely. Life has gotten a lot better but not yet normal...or at least a predictable equilibrium.

I still need someone to help me through this. Unfortunately everyone I know has their own life to live which often does not include me, so I find myself alone with my thoughts. Or alone with my Volvo, I had no idea a 1999 station wagon was capable of being such a good companion. 
I keep praying that I am nearing the end of the lonely journey. It has gone on so long and just seems never ending. 

Those are my two feet. I will stand on them.

I hope you all have had a great thanksgiving week! During this season we get time to spend with friends and family. It’s a shame that we have to wait for a holiday to be around our friends and family, but that just makes it all the more special.

I have had a better week this week which I am glad to report. I like to say something positive every so often, I hate feeling so negative all the time. I do not like negativity one bit. That’s something that I miss the most, being positive and looking forward. Hard days have only gotten harder. Fear has only dug deeper. Fear...fear has grown in me in more ways than I ever knew possible. I always have had faith that I will be okay one day, whether it be that I live a healthy life on earth or in heaven. Suffering isn’t forever and I have never doubted that. 

What I have learned is how many different types of mental suffering one could experience-all at once.  I have become so afraid of others judgement and opinions, I have become so paranoid of everything around every corner, paranoid that my friends are just being sympathetic towards my cause and they are just temporary, and most of all afraid that I will never get “me” back in one piece. I don’t like the idea of never exactly being myself again, I know that my body will be healthy again but I do fear that I will have “battle scars” I guess you could say. I used to feel like being sick had built me up in many ways. I have lost this feeling, I am sad to say. I feel like the events of this year have turned me bitter and pathetic. 

I don’t know where all of these thoughts came from. I don’t know when they started. I know I never purposely welcomed them in, but maybe I did by accident ? Sometimes I wish I did have a twin, someone right beside me every minute of the day who knew what I was supposed to be like and could see when something was turning south. I used to catch it, like oh no this ain’t right I need to be working on these thoughts and these emotions. Something broke in me and I lost that too. I lost my personal monitor for keeping up with what’s running through me. Seeing as I am a chronic insomniac I spend a significant amount of time awake at night thinking(I know that’s the worst time to think). Seeing as I sleep alone also means that all this thinking that leads to my fears and rampant emotions means no one is around to see that I am torturing myself by accident. My quiet time at night used to be spent reading and calming my mind. Oftentimes my reading would be other Lyme blogs, those are always so encouraging to read. Well, brain fog said no to reading for about the last eight months. So my quiet relaxing time has diminished and anxiety moved right on in and took its place. If anxiety had a face it’d be a smiling, greedy little devil. It just showed up one day and started stirring the trouble that it causes-also unwelcomed. 

This week I have tried to get back to calming my brain down a bit. Since I started skipping some of my meds every day my brain is starting to allow reading again. While this window of opportunity is open, I’m getting back to reading some old blogs that have traditionally been encouraging. So the one I’ve been flipping through is Ticks and Trust by Shannon Goertzen. Yesterday I sent this post to several friends of mine, who I share Lyme things with. It was recieved well, as you can imagine with fear and anxiety being an issue sharing personal things is something that I am wary about. The post just explains so well what I am feeling and what everyone with chronic Lyme probably feels. I can’t not share it, it’d be a disservice. Reading through Shannon’s blog has certainly helped me to gain some of my confidence back. It’s reminded me that I’m not just hurting and suffering, I’m fighting and digging in my heels. I may be out of sorts constantly, in pain, and foggy but I am fighting and I am winning. 

I am still here am I not?? I don’t have any reason to not be here anymore. This disease isn’t going to kill me, it doesn’t have my permsion to do that. I am not in that bad of shape, my brain isn’t itself whatsoever and my body is right behind it. I still work and I still go to school, I have never had to call in sick to work. Never. So I can’t be doing that bad. At least physically. 

I just have to keep digging in my heels and reminding myself of the things I have to be thankful for. When I first started going south earlier this year I quickly became thankful for what I had. This time of year, however, everyone is talking about what they are thankful for and that does my dusty mind some good at being grateful. It gives me excuses to tell people why I’m thankful and it also inspires me of what I have to be thankful for that I may not have noticed. Something else that comes with this season is time off from work and school that I can spend with my family and friends. So I have something new to be thankful for right now. My friends are my number 1 support system, they get me through the worst of days whether they even know it’s a bad day or not. Usually all that’s visible is how much I talk out loud, the worse I feel the quieter I am. Other than that it’s not always very visible that I’m floating south. 

I can say this also, since I started to rethink my school decisions for next year my depression has disappeared. Last week I decided maybe I should follow my best friend to school next year, him d I have talked about it and he seems to love the idea. Allowing myself to even think about going off to school and unleashing myself from the teather that Lyme has kept me on has been very freeing. I’d be with my best friend so I should be safe, he’s been with me sick before. Even so, by the time I would be leaving for school next year I should be out of this funk. Some of the stress that has been a contributing factor to the severity of my health decline is gone and will stay gone. So now I am in a recovery period of sorts. Stress isn’t what put me in decline, or at least as a whole. But it’s been a major contribution I believe. 

Naturally, thinking about following my friend and going off to school has sparked a couple dozen fears about the situation. #1 being that I am only going off to school because people will think I can’t let go of my friend. The school in question was actually my goal way back when I thought I would be  100% healthy when I entered college. So it would be like going back to an old dream, opening a box that I thought had long been closed and locked. Now the box has been opened and this time I have a best friend to go with it, I didn’t when this was my original plan. Actually I wouldn’t have ever met him most likely if I left for this school my first year of college. 

So I am trying to use these thoughts to encourage myself, if this is meant to be, that I am making a good choice. 

Like I said, since I started playing around with this my depression disappeared. Remnants still poke around, but I haven’t had any for real depression since. That was more than a week ago now. 

Fears of being judged are at an all time high but this too shall pass. I figured all I can do right now is apply to the school and wait. Either I’ll get in or a I won’t and that’ll be that.

I just keep on praying. I am praying for guidance and healing. I am praying for others that are suffering(Rebekah Miller and the Goertzen family among those), I am praying for my uninvited house guests-depression, anxiety, fear, and sadness to be banished without a trace
I have faith that all of these prayers will be answered, I don’t know how or when they will be answered. If I did I guess that would be a wish, not a prayer. I’m not much into the wishing business...now that’s something I don’t have faith in.

I am also praying that this week has inspired thankfulness to be in your heart this week. I have found many things to be thankful for that my issues have prevented me from seeing. Being around others of a like mind tends to make the old wheels turn and new thoughts appear!