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....
Monday, November 20, 2017
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..
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.
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.
Sunday, October 29, 2017
A Search for Prayer and Response
Hello all, I have yet another roller coaster post of the ups and downs as of late.
Today(technically yesterday the 28th) marks the 10nth anniversary of my best friends moms death from stage four breast cancer, which metastasized to her liver, and bones.
My friend invited me over for dinner tonight to be with his family, we had a nice time of remembrance and fellowship. You see, I did not know my friend during the time of his moms illness, so it was a bit shocking and different for me to be there for this time. Honored to say the least.
At the dinner table his second mom mentioned that she's been watching the celebration of life video, which I have never heard mentioned before. So when I got home this evening, I searched for it and found it. Then I searched the internet for the Obit, which I also found. In the Obit I found a link to a blog, written by my friends mom during her treatment. I never knew it existed. As of yet, no one else knows I have found it, I don't know if I was supposed to find it or not seeing as I have never been told about it. Maybe it was just old news and it never crossed my friends mind because it was ten years ago...
Ive read several pages of the blog thus far, learning tons of information I never knew. It is also very encouraging, even though I know how the blog will end... there are all kinds of positives laced in the posts. Positives that I can understand as a sick person, such as getting better results on blood tests-some of which were barely short of a miracle. One that stands out to me was upon diagnoses her blood test for tumor markers was just short of 3,000 points. after weeks of treatment it was down in the low triple digits, and did drop into normal range. Her liver went from a major issue, blood was going in the reverse direction in the main artery-to normal and functional. Completely healed with a minor side of scaring. I think all of us with a chronic illness pray for test improvements as quick and remarkable as this.
You see, over the last week or two I have been sad that I have never met this woman, so I have prayed a few times that I would get some kind of message from her. Nothing specific, this is actually unlike me...Its rather unusual to pray to God for information from someone who has passed. This blog written by his mom seems to be the answer for that, many of her posts hit home for me giving me a picture of what my friends life was like during this time period. They also shed a positive light on being sick, I mean she was told on day 1-go home and get your affairs in order you won't see Christmas. Hows that for bleak? How do you not become depressed from news such as that? You know what? She saw Christmas in good health, and then she saw it once more. Beat that depression.
I just cannot believe some of the things I have read, keep in mind these posts that I have read so far are 12 years old. Yet some things she said I feel almost like they spoke right too me. I wish I could have been there for my friend during this time, so so so badly. I can never change the fact that we weren't together then, but the writings of his mom make me feel like I was there, I feel more so like I knew her than never knowing her at all. Its not the same as being there, but just the fact that this was real, is much less foreign I guess you could say. She went through a lot and was put through a lot, but she held her faith like a rock. She lived a better quality of life than she was told, she lived much longer than she was told, and she had faith that no matter what the outcome was it would be okay. She knew there was a good chance was going to die sooner than the standard life span of a woman, but she made every bit of that time count. It wasn't wasted on feeling sad or the woe is me thoughts, thats the power of a woman who prays.
Now as I have said in the past depression has become one of my biggest enemies as of this year. I have never had to battle it significantly before. But now I battle depression, sadness, and feelings of total worthlessness daily. After my last visit to Kansas these issues have lessened, but this past week has been particularly rough. I have never stopped praying throughout this journey and I never intend too. Today was an answer to prayers, yet more proof I have no reason to stop praying.
There are many aspects about chronic illness that scare me. It is hard to believe I have been sick for almost seven years now. It is also hard to believe that I am just as afraid now as I was years ago, it seems there is almost always something around to give me a new reason to be afraid. Sometimes these reasons don't exist. Rooted in paranoia. Also a new symptom as of this year.
I often thank God for all of the wonderful people placed in my life, not everyone has this luxury. Some of these people are readers and commenters on this blog such as Rebecca Miller. She never fails to post something encouraging for me, until recently I never thought I needed that much encouragement. All of us who have been placed in a situation with chronic disease should be encouraging one another much more often than the current reality.
I would like to ask for some very specific prayer requests.
I would like for you all to pray that I can fully reconnect to reality, everything now feel dull and I feel distant even on a good day, that my depression will be banished-permanently. its hard to fight when you can't find a reason to, that my kidneys will begin to function normally, and that I will be able to eat and have an appetite like a normal teenage boy.
These are my current biggest roadblocks. I am already on a strong supplement protocol that is showing benefit but I honestly feel that these issues are more spiritual than chemical. I can't explain how, it just is what it is. I have full faith that I becoming sick was no accident and that many great things will come from it. But I do fear what my quality of life and residual damage will be like when my fight with disease is over, what will be permanently gone and what will be recovered.
In honor of my friends mom
Because of my depression, I have learned to appreciate the moments in life that are truly and timelessly special. The one of a kind, never to be repeated again moments.
Today(technically yesterday the 28th) marks the 10nth anniversary of my best friends moms death from stage four breast cancer, which metastasized to her liver, and bones.
My friend invited me over for dinner tonight to be with his family, we had a nice time of remembrance and fellowship. You see, I did not know my friend during the time of his moms illness, so it was a bit shocking and different for me to be there for this time. Honored to say the least.
At the dinner table his second mom mentioned that she's been watching the celebration of life video, which I have never heard mentioned before. So when I got home this evening, I searched for it and found it. Then I searched the internet for the Obit, which I also found. In the Obit I found a link to a blog, written by my friends mom during her treatment. I never knew it existed. As of yet, no one else knows I have found it, I don't know if I was supposed to find it or not seeing as I have never been told about it. Maybe it was just old news and it never crossed my friends mind because it was ten years ago...
Ive read several pages of the blog thus far, learning tons of information I never knew. It is also very encouraging, even though I know how the blog will end... there are all kinds of positives laced in the posts. Positives that I can understand as a sick person, such as getting better results on blood tests-some of which were barely short of a miracle. One that stands out to me was upon diagnoses her blood test for tumor markers was just short of 3,000 points. after weeks of treatment it was down in the low triple digits, and did drop into normal range. Her liver went from a major issue, blood was going in the reverse direction in the main artery-to normal and functional. Completely healed with a minor side of scaring. I think all of us with a chronic illness pray for test improvements as quick and remarkable as this.
You see, over the last week or two I have been sad that I have never met this woman, so I have prayed a few times that I would get some kind of message from her. Nothing specific, this is actually unlike me...Its rather unusual to pray to God for information from someone who has passed. This blog written by his mom seems to be the answer for that, many of her posts hit home for me giving me a picture of what my friends life was like during this time period. They also shed a positive light on being sick, I mean she was told on day 1-go home and get your affairs in order you won't see Christmas. Hows that for bleak? How do you not become depressed from news such as that? You know what? She saw Christmas in good health, and then she saw it once more. Beat that depression.
I just cannot believe some of the things I have read, keep in mind these posts that I have read so far are 12 years old. Yet some things she said I feel almost like they spoke right too me. I wish I could have been there for my friend during this time, so so so badly. I can never change the fact that we weren't together then, but the writings of his mom make me feel like I was there, I feel more so like I knew her than never knowing her at all. Its not the same as being there, but just the fact that this was real, is much less foreign I guess you could say. She went through a lot and was put through a lot, but she held her faith like a rock. She lived a better quality of life than she was told, she lived much longer than she was told, and she had faith that no matter what the outcome was it would be okay. She knew there was a good chance was going to die sooner than the standard life span of a woman, but she made every bit of that time count. It wasn't wasted on feeling sad or the woe is me thoughts, thats the power of a woman who prays.
Now as I have said in the past depression has become one of my biggest enemies as of this year. I have never had to battle it significantly before. But now I battle depression, sadness, and feelings of total worthlessness daily. After my last visit to Kansas these issues have lessened, but this past week has been particularly rough. I have never stopped praying throughout this journey and I never intend too. Today was an answer to prayers, yet more proof I have no reason to stop praying.
There are many aspects about chronic illness that scare me. It is hard to believe I have been sick for almost seven years now. It is also hard to believe that I am just as afraid now as I was years ago, it seems there is almost always something around to give me a new reason to be afraid. Sometimes these reasons don't exist. Rooted in paranoia. Also a new symptom as of this year.
I often thank God for all of the wonderful people placed in my life, not everyone has this luxury. Some of these people are readers and commenters on this blog such as Rebecca Miller. She never fails to post something encouraging for me, until recently I never thought I needed that much encouragement. All of us who have been placed in a situation with chronic disease should be encouraging one another much more often than the current reality.
I would like to ask for some very specific prayer requests.
I would like for you all to pray that I can fully reconnect to reality, everything now feel dull and I feel distant even on a good day, that my depression will be banished-permanently. its hard to fight when you can't find a reason to, that my kidneys will begin to function normally, and that I will be able to eat and have an appetite like a normal teenage boy.
These are my current biggest roadblocks. I am already on a strong supplement protocol that is showing benefit but I honestly feel that these issues are more spiritual than chemical. I can't explain how, it just is what it is. I have full faith that I becoming sick was no accident and that many great things will come from it. But I do fear what my quality of life and residual damage will be like when my fight with disease is over, what will be permanently gone and what will be recovered.
In honor of my friends mom
Because of my depression, I have learned to appreciate the moments in life that are truly and timelessly special. The one of a kind, never to be repeated again moments.
Thursday, October 5, 2017
Hansa Round 5 days 1-2
I am going to go ahead and post about my doctors visits from today and yesterday, I know I still haven't posted my 4th visit to the clinic. Ill get to it one day.
Day 1-
Day 1-
OK so on to today's visit, #1 among all things from the doctors testing and my blood work-parasites. So again, we are at it treating those with new things, so far he hasn't said if they were digestive or blood parasites. As far as their effects, they are causing issues in my whole system not just something here or there.
Something unique that muscle testing can find is "attachments" or "entities", that's what he found on me today, negative energy attached to the parasites. The remedy he made for me was to clear the negativity from my system and disconnect the connection it had on me. This surprised me, yet didn't surprise me. I have been so dark and depressed...much more than ever before. After he gave me the remedy I felt happier, for the rest of the day I was able to laugh and have fun even though I felt garbagy still.
I have never had anyone tell me this before. Something interesting, last week I visited my friend who does muscle testing, shes been helping me out some since I have not been able to see my doctor. She couldn't figure out what was wrong with me, we ended up down meaningless rabbit trails, no answers, and I was completely untestable. We tried for two hours to figure out what was up in my system, nothing. We didn't check for attachments though, and thats what the test block was.
He made a new remedy for those today, once again this is a completely new and different treatment than before. In other words we are treating a different aspect of the whole parasitic, its not necessarily anything new as far as infections go. Parasites take a while to get rid of because they are very unique, bacteria and virus are hard but in their own separate aspect. If you have a strong functioning immune system, you wont pickup a virus or bacteria, and if you do they wont be capable of sticking in your system for long.
Lyme disease is a bacteria and it is hard to get rid of because it is capable of disarming and destroying immune cells, infecting the entire body but nonetheless it can be killed.
Here's what makes parasites unique, they are a living breathing multicellular organism just like an animal. They are capable of harboring their own set of bacteria, virus, metals, just like people. Parasites have their own brain, blood system, and digestive system unlike bacteria and virus. So when a person becomes infected with parasites and takes a treatment, the parasites are killed but then they release whatever pathogens or toxins they were carrying. You can take a standard X drug for Y parasite for years, you will never be able to kill every single one of them with a drug and you will have strong side effects from the dying parasites.
In the way I am being treated, the side effects, the parasites, and the communication between my body and the parasites are being addressed.
That's another thing that makes parasites unique, they have to have a host to survive. When they infect a person or an animal, they release chemicals that stop your body from recognizing them so they can fly under the radar. So the communication aspect has to be addressed as well, you will never find a standard doctor or naturopath capable of treating this. It takes a specialized doctor like mine who can do specialized testing to see what the pathogens are doing and what will stop them, there is no set protocol for this. Its mostly homeopathic treatment to disconnect the connection of the parasites to my system, herbs and drugs will mainly just kill. The thing is, you cant just kill parasites, they become resistant and they hide. They can even incase themselves in cysts which can't be killed.
So that was the majority of todays appointment, he made one remedy to cover everything involved with the parasitic ordeal, tomorrow he will test again to see what else needs to be done. My body actually tested at saturation today, which means we covered everything possible for the day-no more. My doctor said that is a pretty big deal because that means this new treatment is powerful enough to negate everything else.
Lyme disease is a bacteria and it is hard to get rid of because it is capable of disarming and destroying immune cells, infecting the entire body but nonetheless it can be killed.
Here's what makes parasites unique, they are a living breathing multicellular organism just like an animal. They are capable of harboring their own set of bacteria, virus, metals, just like people. Parasites have their own brain, blood system, and digestive system unlike bacteria and virus. So when a person becomes infected with parasites and takes a treatment, the parasites are killed but then they release whatever pathogens or toxins they were carrying. You can take a standard X drug for Y parasite for years, you will never be able to kill every single one of them with a drug and you will have strong side effects from the dying parasites.
In the way I am being treated, the side effects, the parasites, and the communication between my body and the parasites are being addressed.
That's another thing that makes parasites unique, they have to have a host to survive. When they infect a person or an animal, they release chemicals that stop your body from recognizing them so they can fly under the radar. So the communication aspect has to be addressed as well, you will never find a standard doctor or naturopath capable of treating this. It takes a specialized doctor like mine who can do specialized testing to see what the pathogens are doing and what will stop them, there is no set protocol for this. Its mostly homeopathic treatment to disconnect the connection of the parasites to my system, herbs and drugs will mainly just kill. The thing is, you cant just kill parasites, they become resistant and they hide. They can even incase themselves in cysts which can't be killed.
So that was the majority of todays appointment, he made one remedy to cover everything involved with the parasitic ordeal, tomorrow he will test again to see what else needs to be done. My body actually tested at saturation today, which means we covered everything possible for the day-no more. My doctor said that is a pretty big deal because that means this new treatment is powerful enough to negate everything else.
He also worked on the hernia, he felt around my stomach and said that my diaphragm was swollen to the point that it was covering my stomach. In a regular hiatal hernia the stomach get stuck in the bottom of the diaphragm, so by pulling the stomach down you correct the hernia. In my case its the reverse, my diaphragm is swollen and veering my stomach. He adjusted it and did some facial release using the percussor, then he used hyssop oil on it to bring down the inflammation. Again he will check it tomorrow, but after all he did today it may finally be a done deal. He told me I need to continue using the hyssop for a while to prevent it from coming back, so that will be something I do once I get home.
As far as blood results go, this round is fairly different than before in how they've changed. For the first time vitamin D is good, cholesterol is closer to where it should be, white blood cell count is higher meaning my immune system is actually beginning to work on its own, but I did hit a new extreme on easonifils which is the parasite marker. He said its rare to see it as high as mine is, so we know for sure that we are chasing the right rabbit trail. My kidneys are showing some stress also, other than those two things I don't have a bad report.
With as bad as I have felt the past couple of months I was expecting worse for my blood scores, and the parasite markers are pretty bad. But that's it, Lyme itself is not showing up so far, that's a big positive. Neither are any other tick borne infections that I have, doesn't mean they aren't there it just means they aren't a problem right now.
Tomorrow ill find out what else we can find to correct, I'm fairly satisfied for today's visit because it was entirely new stuff as far as what's actually happening in my body and new treatment.
Day 2-
Today was another productive visit at the doctors office. We worked on parasites again, this time with focus on the side affects of the parasites themselves. He found that the parasites are disrupting my mitochondria, causing me to be tired all the time. Plus he found some tie ins to my stomach and hormones.
He found I need a dopamine, serotonin, and pregnenolone booster to counteract the side affects. Plus he added something for me to take to support my adrenals during this time. The adrenals are what make a significant portion of your hormones, plus they make energy. By supporting my adrenals in addition to treating the other issues it adds a boost to my body as a whole.
He also added a neuro anti-inflammatory supplement, because the parasite toxins are setting off my brain and nervous system. So this tied with the dopamine and serotonin, this will help with my terrible brain fog.
The pregnenolone is tied into the adrenal pathway, so that is what the purpose of this hormone.
He found I need a dopamine, serotonin, and pregnenolone booster to counteract the side affects. Plus he added something for me to take to support my adrenals during this time. The adrenals are what make a significant portion of your hormones, plus they make energy. By supporting my adrenals in addition to treating the other issues it adds a boost to my body as a whole.
He also added a neuro anti-inflammatory supplement, because the parasite toxins are setting off my brain and nervous system. So this tied with the dopamine and serotonin, this will help with my terrible brain fog.
The pregnenolone is tied into the adrenal pathway, so that is what the purpose of this hormone.
Most of this is new for me, several years ago I did a dopamine booster and it didn't help me much. This is the first time that my body has tested well for any direct neurotransmitter(brain chemical) support, in other words this is a new layer being corrected that we haven't been able to reach.
Pregnenolone is also new for me, I am interested to see how this makes me feel before long.
Pregnenolone is also new for me, I am interested to see how this makes me feel before long.
I feel pretty worn out today, my brain fog is just making everything difficult.
I see the doc again tomorrow, then I will be headed home.
When Time Stops
I am back at the clinic for part of this week and I had a realization today. I was laying on the couch in the hotel room, thinking about all the homework I needed to get done and also how alone I have been feeling.
The TV was going but I was hardly watching it, I was so tired for most of this afternoon that I have been lost in space. Whenever I get like this I tend to just flip through my phone, flipping from one page to another. Opening an app then closing it, until I decide I need to do something better with my time. I realized that time had stopped, minutes felt like hours, I wasn't talking to anyone, TV was just noise, I didn't want to read, I couldn't do anything. I was so tired and foggy I couldn't make myself do any of my normal activities.
On top of that I realized I wasn't talking to anyone because time has not stopped for my friend, they are all either in school or at work. They don"t have the time to talk to me right now, too much life in the way. I haven't heard from my best friend since 6:30am yesterday, he hasn't seen any of my messages about whats going on with me here at the clinic, School and work dictate otherwise. Its sad for me, because he's one of the very few people I feel like I actually connect with, but he isn't sick-his life cant just stop because of me. Same with the rest of my friends and family.
Add that to the list of chronic disease symptoms that others just do not understand, being alone because the disease even infects our time. Our day, Our week, Our year.
I would so much rather have been at work today, joking around with my co workers and working on a new project I have been assigned to overhead. It would be easier to do my homework at home, in my own bed or on my own couch. The hotel room is nice and plenty comfortable, but it ain't home. You cannot beat being at home when you don't feel well. All other environments feel so cold and absent when the world is crashing down around you, only the chronically ill will understand what I just said. Its just not an option right now, I cant be home and honestly I don't feel well enough to be at home. Coming to see my doctor is what I have to do right now.
Today, after a whole morning and afternoon of trying to muster the energy and motivation, I finished reading my history book for class. Next I have to write a paper on it, but lets not think about that right now.
My doctor visits have been going very well, I can see progress in my future. I do have a little bit of peace, but too much brain fog to let me hold onto it.
The TV was going but I was hardly watching it, I was so tired for most of this afternoon that I have been lost in space. Whenever I get like this I tend to just flip through my phone, flipping from one page to another. Opening an app then closing it, until I decide I need to do something better with my time. I realized that time had stopped, minutes felt like hours, I wasn't talking to anyone, TV was just noise, I didn't want to read, I couldn't do anything. I was so tired and foggy I couldn't make myself do any of my normal activities.
On top of that I realized I wasn't talking to anyone because time has not stopped for my friend, they are all either in school or at work. They don"t have the time to talk to me right now, too much life in the way. I haven't heard from my best friend since 6:30am yesterday, he hasn't seen any of my messages about whats going on with me here at the clinic, School and work dictate otherwise. Its sad for me, because he's one of the very few people I feel like I actually connect with, but he isn't sick-his life cant just stop because of me. Same with the rest of my friends and family.
Add that to the list of chronic disease symptoms that others just do not understand, being alone because the disease even infects our time. Our day, Our week, Our year.
I would so much rather have been at work today, joking around with my co workers and working on a new project I have been assigned to overhead. It would be easier to do my homework at home, in my own bed or on my own couch. The hotel room is nice and plenty comfortable, but it ain't home. You cannot beat being at home when you don't feel well. All other environments feel so cold and absent when the world is crashing down around you, only the chronically ill will understand what I just said. Its just not an option right now, I cant be home and honestly I don't feel well enough to be at home. Coming to see my doctor is what I have to do right now.
Today, after a whole morning and afternoon of trying to muster the energy and motivation, I finished reading my history book for class. Next I have to write a paper on it, but lets not think about that right now.
My doctor visits have been going very well, I can see progress in my future. I do have a little bit of peace, but too much brain fog to let me hold onto it.
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