Friday, November 24, 2017

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!


Monday, November 20, 2017

Claustrophobic

Lately I’m just feeling trapped. Like nothing at all is going right and nothing will ever change. I’m just stuck in my own skin with my own set of issues that no one can seem to help me with. I don’t get it.
Everytime I try to find something to be positive about, something worse happens. Whenever I start to feel a little better something new comes up. I started skipping doses off my meds, instead of taking the anti parasitics twice a day I’m doing it once now. It was just getting way to overwhelming for me to handle, I’ve never done this before. I’ve always been able to power through feeing worse and herxes. But daily life is just getting too extreme and unenjoyable for me to handle. I’m only human and my human weakness is only showing brighter these days.
My depression has virtually gone away since I started reducing my meds, I wasn’t feeling too bad for a few days last week. I liked it, I praised God for the break. But now agitation and aggravation has taken the place of depression. I’m constantly annoyed and nothing ever feels good enough. At night I lay awake listening to all of my thoughts about why I’m not good enough and that if I tried harder I wouldn’t feel so sick. If I wasn’t so needy I wouldn’t be so discontent. If I was appreciative I would be happy and grateful for what I have. If I didn’t screw up so much good things would actually happen. Instead I attract bad things and failures because I don’t work hard enough and I don’t do everything like I should.

I can’t get away from all this. I can always find a reason for something not going my way. The biggest thing bugging me right now is my best friend told me he can’t come to Kansas to be with me during treatment. He’s getting his wisdom teeth taken out instead, not fun at all for him either. But out of all the times to schedule it had to be then...on top of that another friend of mine will be having foot surgery while I’m at the clinic next. So I’ll have two friends going under the knife while I’m in Kansas and I won’t be able to be there for them either. They’ll be knocked out while I’m getting sick from treatment so I won’t have anyone to talk to...and I won’t be able to be around them because I’m in another state. It’s just screwed up.
I’m not looking forward to more treatment...I can’t comtinue on with this herxing. Going back will mean new meds and more herxing. If I’m still herxing this bad from my last round of supplements I know I still have a ways to go...

It just bugs me so much how everyone else can do enjoyable things, or find enjoyment in anything...while I’m trying to enjoy anything at all. I have a fun job and I have great friends, even though these days they are rather hard to access. It shouldn’t be seemingly impossible to smile. Why do I have to be agitated all the time?
I don’t know what I could do differently...but I’m obviously doing it all wrong....

Sunday, November 12, 2017

Never Ending Frustration

The amount of pain that Lyme disease has caused me never ceases to amaze me. How? How can one little bacteria kill me like it has. Through and through parts of me have been killed. I don’t dream anymore, I don’t aspire for amazing things like I once did. It’s too painful, because I know that dream will probably get squashed by some physical limitation that I have. I can’t dream anymore...even if I wanted too, what’s out there still? I’m not even sure what I could want besides my health. I love peolle and my friends, I aspire to be the person all of my freinds can come too and lean on. I think I do alright at that. In the end though, it means more to me that I was there than it does to them. They don’t lie awake at night wishing there was someone out there to reach out too when something goes wrong.
I feel like this disease has broken me all the way to my soul. Every time I have hope and I can see the light at the end of the tunnel I get side swiped. Life throws a new wrench at me and I have to recollect my whole existence so I can once again learn how to live. I am very grateful I can work and go to school, with success. It is something that I enjoy. I don’t go to a special school by any means whatsoever and my work isn’t necessarily something astounding either. I love my job and I adore the people I work with, but I make 1/4 of what my friends make and I don’t work very much...there’s no where for me to be promoted to, so my job is about as unchanging as it gets. I want to strive for more,  a nicer school that is regarded a little higher. I would love to work more hours on more days and make some more money than I’m making, but right now my body can’t do one little bit more. There’s no open opportunity for me to do anything but what I’m doing so for now I am complacent with what I’ve been given. I just wish I was able to strive for more than the baseline.
Tonight has been a hard night. Lots of reminders of what Lyme has done to me have come to my attention, on top of all my meds over running my system leaving me overwhelmed. I am in a lot of pain, depression is eating me, and it is very hard to look up from where I sit...I just don’t know what to do besides pray..

Friday, November 10, 2017

NP Cancer, Urgent Care talk, and GI RX

This week has been full of doctors appointments. Lots and lots...and it went as pretty much expected, no for sure answers and mostly guesses as to what the problem is.
Monday-nurse practioner. My goal here was to see the NP of my old doctor(who was great) to see if I could get some insight on my stomach problems. I am in almost constant pain and it’s difficult to even drink water, not good. So I took my handful of past labs to the appointment with me. She spent a fair bit of time talking to me and looking over the blood work. She told me she was going to run some more labs and check for h.pylori. Great, I figured I probably have it but this could confirm the suspicion. 1+ point for her. She said by looking over my labs and seeing my history of high iron and high ferritin her opinion was I probably had too much blood in my system. The way she explained it made sense, it could be causing my headaches, joint pain and stomach pain. I thought great, this sounds like an easy fix. +2 points for her. The words she used for this condition was polycythemia Vera, never heard of it but sounds good to me. She’s sending me to a hematologist for further evaluation. Works for me.
She also gave me a script for mebendazole for my parasitic issue, I’ve taken this before with seemingly good results. So I welcomed it. When I finished up with my appointment with her I went into the infusion room to get IV’s of magnesium, vitamin C, and glutathione. Again, very much welcomed because my system must be toxic.
I was there just sitting in the chair, I thought I’m gonna google polycythemia Vera. I know nothing about it and now I may have it, time to educate myself. It’s a cancer! I didn’t get a great understanding of it, but it’s a bone marrow disorder. I thought oh my gosh, I have yet another major health issue...among other things I thought.

So naturally I start speaking to other doctors I know for their opinion of this. I call over to my Kansas doctor and let them know I’ve sent an urgent email. He responds a little later and says that’s a bit of a stretch, that’s a major condition to be diagnosed with and I don’t entirely fit the bill. And 3 other doctors I know said the same. Another thing, polycythemia is mainly only found in people over 60-not even close to me. Even in the elderly it’s very rare. So again, I don’t exactly fit.

Wednesday-ultrasound and urgent care.
The nurse practitioner ordered for me to get an ultrasound of my absomen. Again I thought this was a good idea, maybe it would reveal what is wrong with my stomach. No, ultrasound can’t see the stomach. This was only to look at my gallbladder, which is fine. Well, assumed to be fine because ultrasound doesn’t entirely rule out gallbladder issues either.
So Wednesday afternoon I broke, I was in pain and I was starving. Something has to give here. 
Urgent care was easy, no wait and a super nice NP worked with me. The problem is they couldn’t really do much for me besides give me a nausea medication, they were only capable of doing what the original NP did Monday-ultra sound and h. Pylori test. I refused the nausea med because it’s not a solution...just a band aid, no thanks I want to actually fix the problem. 
But, I did get a referral for a GI doc. This is good I thought.

Thursday-GI Doctor day. One again, I went in and there was no wait. Super nice and easy to work with PA. She called over and was able to get my ultrasound and h.pylori results, I appreciated how quickly they worked to get me some answers here. The good news slash bad news, the h.pylori was negative and so was the ultrasound. The GI PA said I could take Prilosec for the pain and see if that works, again no thanks it won’t fix it. She said my problem was most likely an ulcer, okay I’ll go with it. Sounds good I guess. 

So now that’s where I am, it’s assumed that my stomach issues are because of an ulcer. I am not entirely convinced just because there’s no test or anything to prove it, but after this week I’m sick of tests. I went by the office I work at and picks up some supplements for ulcers and I also stopped by the vitamin store for some aloe juice.
My current protocol is marshmallow root tea, peptobismol, mastic gum, Gastro ULC by apex energetics, and aloe juice with chamomile and other herbs. 
In a few days or so I hope to be seeing some change! 

The only downfall is that after all these new things for my gut, the mebendazole, and all my other supplements...my body is overloaded. Which unfortunately means I have uncontrollable anxiety that is absolutely driving me up the wall. Not sure what to do about this but I’m loosing my ever living mind over here....but I guess now....we wait...

Sunday, November 5, 2017

Standing in an Empty Room Full of People

Have you ever been talking to someone and thought” wait, the person in front of me is talking and I haven’t heard a single word.” Or maybe felt that you just don’t connect with certain people. That’s what life with my new brain has been. It doesn’t matter who I’m around or where on this earth I am,  I feel totally alone. Like a dark black hole of sadness yet desperation. Who could feel alone with a dozen or more people around? Why is this even possible? Why can’t anyone help me?
This, this has become my reality. I can’t totally escape it. The last few days have actually been much better and less anxious for me, smiles and laughing have happened. While I am grateful for it all, why can’t this just end?

Yes I have a chronic disease called Lyme. Yes it does cause damage to my body and beat down my immune system allowing opportunistic infections into my system. I get that, it’s not fun and games and not for the faint of heart. But I was chosen to learn from the experience, cool great. I can do all things through Christ who strengthens me, I wholly believe that. Hey I’ve been sick since January 26, 2011. Almost seven years ago and I’m still here, obviously I’ve done something right and I am here but by the grace of God. I’m not going to quit, I’m gonna fight. I’m gonna win. I may not win every single one of the battles that will be thrown at me but I will win the war. If I leave my house tomorrow and get hit by a bus, I won as far as I’m concerned. I never quit being me, I never quit being alive, if doesn’t matter if a bus or an illness kills me tomorrow-as long as I don’t choose to drop out of this fight I win.

Okay, now that I’ve said all that. Let’s be real.

Being sick is hard. Crying all the time is hard, trying to find positivity when the whole universe appears to be crashing down around you 24/7. No no, 24/7 isn’t an exaggeration, I have had many nightmares related to something to do with my health. Even then, some nights I don’t sleep. Again no exaggeration, full consciousness all night long and through the whole next day. It happens people
*and all the sick peolle say amen*

I have cried more tears than I ever felt possible. I have found more reasons to be afraid than I knew existed. I have felt more alone than ever, when I’m in a crowded room full of friends. I have taken more pills, supplements, oils, detox baths, you name it-with the end result being the world just crashing down faster. Why? Why can my body only find new ways to be unhappy and sick? All the time? I have done everything I can to fight and scratch just for a little bit more progress. At one point I was taking a supplement comparable to Xanax two or three times a day, in a high dose each time, just to function. The first dose was right after waking up, sometimes I didn’t even get that 5 seconds of twilight where the world was okay. It was straight to conciousness with a big fat side dish of depression and anxiety. This fortunately only last a few weeks, I found a homeopathic patch that calmed me down and I totally stopped the supplement. I have never reached normal, but I have gotten closer. I don’t even use the patch much these days, every so often I do pull the pack out of my nightstand and put one on. But even when I do, it’s not anywhere near what it was.
For this we praise Jesus. I’ve made it through the worst, I had faith I would make it. I still have faith that one day I will be 100% symptom free 24/7, especially in my sleep. God isn’t a magic genie, just because I prayed a request doesn’t mean I’m gonna get it right here right now.

Going through this has made me learn and appreciate even more, and I say even more very seriously, about what I’m life is important and what is optional. I learned early on in this disease that some things in life you need to enjoy to the fullest because the moment is unrepeatable and it really is worth something. Other things not so much, that shirt that may have been left on my floor and forgotten for a few weeks...no big deal. Believe it or not, a perfectly clean room, a perfect test score, a perfect exercise routine, scoring in sports-optional. It can all be replaced. You will always meet someone with a cleaner and more organized living space, you will meet someone with better test scores, and you can start exercising at any point in life and get gains worth bragging on. You just have to know what to do.
You will not ever be able to repeat learning to drive for the first time, personal conversations at 4:00am with your best friend, or that random person that came into your office and made your day that time. Those are the moments you have to fight for, you’ll always have a shirt to pickup off the floor. Best friends are few and far between. Family is few a far between. Pets that love you, few and far between.

Every so often, I’ll come home from school and my dog will be waiting for me on my bed. She doesn’t do it often but you know what? She’s not gonna be here forever and I won’t be going home and heading straight to my bedroom forever, I appreciate having a little surprise waiting for me. Like I said  it’s not often,  but it’s special to me.

Yet still, just me and the dog...no never. Try this on for size, me and the dog plus a black hole stopping me from being able to feel the moment that is happening. I consciously know what’s going on and know that I am living through a special moment, but I can’t feel it. I can’t feel it. I pray to God that this black hole will shrink and disappear sooner rather than later. I am taking things for depression yes. Things are improving, yes. But...not there yet.

Sometimes my mind will find things for me to be upset about...other times life throws me a curve ball that just seems like more than I can handle. This coming weekend my best friend, the one I said deserves a medal, is taking another visit to a college he would like to go to next year. Said college is several states away...far out of my reach. It’s his dream to go to this college because he loves the programs they have to offer. This weekend he is going to be talking to someone about potential scholarship options so he can afford the school.
I hate it, I hate it with all the hate my tired body can muster. He has been my absolute best friend I have ever had, and he’s gonna leave me...
I barely see him now because of his school and work schedule, at the beginning of the summer he is going on a trip for a month, so the amount of time I get to spend with him has been very little and is projected to stay very little. Even text messages are few and far between. I hate it.
My best friend has never known me as a healthy person, I was doing well when I met him and he knew me for a few months before he found out about my illness. I want to actually do fun things with him as a healthy person, but if he leaves that won’t happen. No I don’t think he’s gonna replace me, but life changes and in a few years the two of us could be living totally different lives than we had now.
I have been trying my best to strive to be happy and healthy so I can do fun normal people things with my friend but it’s seemingly impossible. He’s probably seen me cry more than he’s seen me laugh, he’s the best support system I could ask for. But I grow weary of only throwing the negative things into his life...I don’t want to be his personal black hole. If he leaves, we may never get to do the things I dream about.

I have been going rounds with myself about this. I want him to go to school and enjoy it, if he has a dream school that’s in his near grasp-that’s great! I just can’t take the loss...I thought being sick for so long had made me a stronger person. It has, but the problem is now I am recognize the worth of the things I do have...so when I see one of these things disappear is devastating. Not everyone has a best friend to support them when they are sick. He gets it, none of my other friends get the whole sick thing. He makes life better and more fun, the pain shrinks and the smiles grow, that’s what my best friend can do. Not everyone gets one of these.

On top of that, my best friend has had a lot of struggles lately. A lot, so he’s not so perky and happy, or even much like himself right now...and seemingly hasn’t been for a while now. That worries me the most, something is always stressing him out and it’s never anything small potatoes. It’s taken a toll on him and I really hate to see that, he’s not like me, he doesn’t talk about it when something isn’t right. So it’s hard for me and his other friends to figure out what’s going on, which further scares me. I do not want to see him stress himself into depression because he just burned his system up. I think that’s part of why I am where I am right now, I stressed and burnt out some things.  It’s a big fear of mine to see one of my close friends live through what I’ve lived through. I know he will come around he’s got this, I just want to still be around when it happens and not several states away.
If he goes, I’ll be back to having no one who gets it...I won’t be friendless but I will be without my brother.

In this crowded room I stand, alone as always.