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!!
Showing posts with label prayers. Show all posts
Showing posts with label prayers. Show all posts
Friday, July 26, 2019
Monday, December 24, 2018
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.
“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.
Saturday, October 27, 2018
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....
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....
Monday, October 15, 2018
October Update 2018
Updates 10-15-18
Hey you guys, I know im staying rather quiet these days but I promise its because im staying busy and feeling well enough to stay busy!
It has been a long while since Ive given an actual update as to how I am doing. Ive written several (ok maybe dozens) of emotional posts about this and that and how my emotions seem to successfully screw things up. But those posts are a bit misleading as to how I am doing overall. Yes, emotions of mine do get in the way a lot. Yes I believe they stem from something with some chronic illness of mine, possibly lyme or possibly due to a strep infection. But no, I do actually live. I work 20-25 hours a week, I go to school full time, I have some hobbies that take up a fair bit of time and energy (this blog being one) and I have a social life. I try my absolute best to never find myself bored, I find that if I get bored ill just spiral into depression (even if just for a matter of hours). Depression is one of the most horrible things out there in my opinion, if going out with some friends, reading, working on my car, working, or even-dare I say it-homework...keep me far away from feeling depressed than so be it!
Symptoms as of 10-15-18
Insomnia-this one is pretty bad. On a 0-10 scale, 10 being worst, Im a 6 on a fantastic night, 9 on a horrible night, and about 8 on an average night. Sleep typically lasts from 3:00am-8:00am. Sometimes more and sometimes less. Usually said sleep is rather broken and contains periods of waking up or just dozing.
Pain-not so bad, but its there. If I stretch my pain, especially in my back, will improve.But sometimes i just hurt.
Dizziness-2 on a 0-10, Ive had very few days where dizziness has been an issue. Sometimes its nonexistent for days or weeks.
Brain fog-4 on a 0-10. Its still there on the daily but im doing well in school, so it can't be that bad.
Emotions-A good day they're about a 4. A bad day they can reach a full 10 which includes (but not limited to) crying, arguing in my mind, bits of anger, segregating myself from human kind, and complete inability to be productive.
Cough-I have developed this cough due to a cyst on my thyroid. Some days its not bad but other days my throat is sore and I cough hard for several minutes at a time. More on this at a later date.
Exercise-Still very hard. I feel like im left for dead if I ever do any exercise of substance even for a few minutes. I walk though and I am trying to make that a part of my daily routine. At one point in time I walked most weekdays and felt very well doing so (this was years ago), Im going to make this happen again. One of my long term goals is to be able to get back into doing some hardcore stretching and strength building. The one sport I ever participated in that I miss is gymnastics, I may be a bit old for that now but I could still do some things in the sport. Just to say I can do it.
Hallucinations- I haven't mentioned this one in a while but I think its safe to say this symptom is a full 0 and has been for a while.
Stomach pain and lack of appetite-7 out of 10, I can eat and its rare I actually have pain. But I just cannot eat enough food. I eat tiny portions and a slim number of meals. Some days I can eat plenty compared to my average but its still no where close to the calorie count I should be consuming. If I was one of those people who posted pics of their food on Instagram, they'd be more like monthly posts instead of weekly or daily LOL
This has become a much shorter list than it once was. I used to have a couple dozen symptoms, thankfully im down to just a few.
One thing that I have benefitted from keeping this blog is the record of the last few years of treatment. It can really put things into perspective on how things can change for the better.
I will one day be as strong physically as I am mentally. I like to think I am a strong fighter against chronic disease. I dont take things sitting down, just waiting for something magical to happen. I may not take anything lying down but I do take many things on my knees. I thank God for all that he has taught me over the last seven, close to eight, years now. I have learned many invaluable lessons and id like to think ive been able to help other people with what they go through. My faith is strong, I know that only my earthly body is affected by struggles. My spirit does get afflicted and the stress of it all does wear on ones heart after so long, but in the end neither Lyme, nor any other illness can kill my spirit. I will always have my relationship with Jesus. No sleepless night or extreme pain or starvation can take that away. There is a special peace in knowing that I will always have the Lord by my side. I know that I will one day be 100% healed, whether it be in my earthly home or when I go be with the Lord. I know that suffering is never forever, even when anxiety tries to tell me that it is.
I know that each prayer and each pill bottle completed is one step closer to full healing. There is no "magic number" to how many prayers are said or how many pills are taken, but whether we realize it or not one day we will pray "please heal my XYZ" or "please take away this pain" for the last time. Again, whether it be because healing was physical or spiritual, healing from the Lord is healing.
I am thankful for my illness and thankful for my suffering. I have never in the last seven years said-this was a mistake, I was never meant to get sick. Because I was, take it as you wish, but suffering is a part of this life. No one lives a pain free or illness free life. I personally believe that my illness was due to the Fall of Man in the Book of Genesis. Due to the sin of man, by choice, we will all be destined to a less than perfect life until Christ's return.
I will take the path I am given in stride. I will make mistakes, I will be negative, and I will get angry. But once I stop throwing my tantrum I will take ever measure that I can find to fight back against whatever the struggle may be.
What can I say, fighting is in my blood?
Here is my most recent picture of pill bottle empties-
Its been a while since I posted a pic, but for those of you who are new readers here. I save all of my empty pill bottles. I want to see how many bottles, capsules, and oz's of liquid it takes before I can say I DID IT! This collection is still growing. I like to think of all my empty bottles as proof of fighting. Each pill, one step closer to beating Lyme. I also view them as encouragement, I can look back and hold a pill bottle that I once needed for a symptom that left months or years ago and say-this battle was a success. Or I can look at how many bottles ive used for fighting a particular symptom and say-one step closer. I like tangible proof, I like the things I can see with my eyes and hold with my hands. Saving my bottles gives me a way of looking back, and viewing how ive changed things for the better going forward. They show that I didn't quit. If I had skipped out on treatment I wouldn't have any bottles and id sure have a whole lot more symptoms. Or worse, if I had given up on life altogether and quit in the most tragic of ways, there would be fewer bottles or even no bottles.
Id like to ask each one of you to pray for someone you know is in need. I always covet prayers from others, for healing, support, for a healthy body, and pray for encouragement. But maybe make it part of you're routine to pray for your friends and family who are going through some things in their life.
"For where two or three are gathered together in my name, there am I in the midst of them"
Matthew 18:20
Hey you guys, I know im staying rather quiet these days but I promise its because im staying busy and feeling well enough to stay busy!
It has been a long while since Ive given an actual update as to how I am doing. Ive written several (ok maybe dozens) of emotional posts about this and that and how my emotions seem to successfully screw things up. But those posts are a bit misleading as to how I am doing overall. Yes, emotions of mine do get in the way a lot. Yes I believe they stem from something with some chronic illness of mine, possibly lyme or possibly due to a strep infection. But no, I do actually live. I work 20-25 hours a week, I go to school full time, I have some hobbies that take up a fair bit of time and energy (this blog being one) and I have a social life. I try my absolute best to never find myself bored, I find that if I get bored ill just spiral into depression (even if just for a matter of hours). Depression is one of the most horrible things out there in my opinion, if going out with some friends, reading, working on my car, working, or even-dare I say it-homework...keep me far away from feeling depressed than so be it!
Symptoms as of 10-15-18
Insomnia-this one is pretty bad. On a 0-10 scale, 10 being worst, Im a 6 on a fantastic night, 9 on a horrible night, and about 8 on an average night. Sleep typically lasts from 3:00am-8:00am. Sometimes more and sometimes less. Usually said sleep is rather broken and contains periods of waking up or just dozing.
Pain-not so bad, but its there. If I stretch my pain, especially in my back, will improve.But sometimes i just hurt.
Dizziness-2 on a 0-10, Ive had very few days where dizziness has been an issue. Sometimes its nonexistent for days or weeks.
Brain fog-4 on a 0-10. Its still there on the daily but im doing well in school, so it can't be that bad.
Emotions-A good day they're about a 4. A bad day they can reach a full 10 which includes (but not limited to) crying, arguing in my mind, bits of anger, segregating myself from human kind, and complete inability to be productive.
Cough-I have developed this cough due to a cyst on my thyroid. Some days its not bad but other days my throat is sore and I cough hard for several minutes at a time. More on this at a later date.
Exercise-Still very hard. I feel like im left for dead if I ever do any exercise of substance even for a few minutes. I walk though and I am trying to make that a part of my daily routine. At one point in time I walked most weekdays and felt very well doing so (this was years ago), Im going to make this happen again. One of my long term goals is to be able to get back into doing some hardcore stretching and strength building. The one sport I ever participated in that I miss is gymnastics, I may be a bit old for that now but I could still do some things in the sport. Just to say I can do it.
Hallucinations- I haven't mentioned this one in a while but I think its safe to say this symptom is a full 0 and has been for a while.
Stomach pain and lack of appetite-7 out of 10, I can eat and its rare I actually have pain. But I just cannot eat enough food. I eat tiny portions and a slim number of meals. Some days I can eat plenty compared to my average but its still no where close to the calorie count I should be consuming. If I was one of those people who posted pics of their food on Instagram, they'd be more like monthly posts instead of weekly or daily LOL
This has become a much shorter list than it once was. I used to have a couple dozen symptoms, thankfully im down to just a few.
One thing that I have benefitted from keeping this blog is the record of the last few years of treatment. It can really put things into perspective on how things can change for the better.
I will one day be as strong physically as I am mentally. I like to think I am a strong fighter against chronic disease. I dont take things sitting down, just waiting for something magical to happen. I may not take anything lying down but I do take many things on my knees. I thank God for all that he has taught me over the last seven, close to eight, years now. I have learned many invaluable lessons and id like to think ive been able to help other people with what they go through. My faith is strong, I know that only my earthly body is affected by struggles. My spirit does get afflicted and the stress of it all does wear on ones heart after so long, but in the end neither Lyme, nor any other illness can kill my spirit. I will always have my relationship with Jesus. No sleepless night or extreme pain or starvation can take that away. There is a special peace in knowing that I will always have the Lord by my side. I know that I will one day be 100% healed, whether it be in my earthly home or when I go be with the Lord. I know that suffering is never forever, even when anxiety tries to tell me that it is.
I know that each prayer and each pill bottle completed is one step closer to full healing. There is no "magic number" to how many prayers are said or how many pills are taken, but whether we realize it or not one day we will pray "please heal my XYZ" or "please take away this pain" for the last time. Again, whether it be because healing was physical or spiritual, healing from the Lord is healing.
I am thankful for my illness and thankful for my suffering. I have never in the last seven years said-this was a mistake, I was never meant to get sick. Because I was, take it as you wish, but suffering is a part of this life. No one lives a pain free or illness free life. I personally believe that my illness was due to the Fall of Man in the Book of Genesis. Due to the sin of man, by choice, we will all be destined to a less than perfect life until Christ's return.
I will take the path I am given in stride. I will make mistakes, I will be negative, and I will get angry. But once I stop throwing my tantrum I will take ever measure that I can find to fight back against whatever the struggle may be.
What can I say, fighting is in my blood?
Here is my most recent picture of pill bottle empties-
Its been a while since I posted a pic, but for those of you who are new readers here. I save all of my empty pill bottles. I want to see how many bottles, capsules, and oz's of liquid it takes before I can say I DID IT! This collection is still growing. I like to think of all my empty bottles as proof of fighting. Each pill, one step closer to beating Lyme. I also view them as encouragement, I can look back and hold a pill bottle that I once needed for a symptom that left months or years ago and say-this battle was a success. Or I can look at how many bottles ive used for fighting a particular symptom and say-one step closer. I like tangible proof, I like the things I can see with my eyes and hold with my hands. Saving my bottles gives me a way of looking back, and viewing how ive changed things for the better going forward. They show that I didn't quit. If I had skipped out on treatment I wouldn't have any bottles and id sure have a whole lot more symptoms. Or worse, if I had given up on life altogether and quit in the most tragic of ways, there would be fewer bottles or even no bottles.
Id like to ask each one of you to pray for someone you know is in need. I always covet prayers from others, for healing, support, for a healthy body, and pray for encouragement. But maybe make it part of you're routine to pray for your friends and family who are going through some things in their life.
"For where two or three are gathered together in my name, there am I in the midst of them"
Matthew 18:20
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.
Tuesday, March 1, 2016
I Would Like to Ask for Something
As you all have seen I follow many blogs, at some point I think I've mentioned most of them. A few months ago I posted about one blog in particular, Ticks and Trust. This blog is written by a Canadian mom who also battles Lyme disease and several co-infections. Several years ago her son Parker was also bitten. Shannon has since been able to better than when she had a full blown set of infections constantly. Parker however has not been able to become assymptomatic. He reached remission once, but the pain never fully went away. Now he is doing worse and nothing seems to be making him well.
The faith and confidance in of this family has been challenged so hard. I think many of the people who read my blog understand what it's like to he chronically ill because most of them probably are. But this family, nearly all of them have been Lyme positive at some point. Nearly all of them have been through Lyme treatment. They have all had to deal with trying to find a doctor to treat them, which has turned into multiple doctors and multiple treatments. Shannon's oldest and youngest are doing well how, but her middle child Parker only knows suffering at this point.
I would like to ask for prayers for the Goertzen family. I know what it's like to be the sick kid whose just held back by everything, thinking about other kids like Parker who are much worse than I ever was just makes my heart break.
I wish I had some other way to help them in addition to our prayers, but this time all I have to offer is my own hope in God that one day he will he ok. Parker will be a new person and when he comes out of this darkness he lives under he will be able to look back and find the positive things that happened in his long journey.
I am personally praying he will never lose faith that he will be okay and all of this happens for a reason, it's not God trying to torture him in any way.
Here is a link to the most recent post.
Psalm 23:4
Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.
The faith and confidance in of this family has been challenged so hard. I think many of the people who read my blog understand what it's like to he chronically ill because most of them probably are. But this family, nearly all of them have been Lyme positive at some point. Nearly all of them have been through Lyme treatment. They have all had to deal with trying to find a doctor to treat them, which has turned into multiple doctors and multiple treatments. Shannon's oldest and youngest are doing well how, but her middle child Parker only knows suffering at this point.
I would like to ask for prayers for the Goertzen family. I know what it's like to be the sick kid whose just held back by everything, thinking about other kids like Parker who are much worse than I ever was just makes my heart break.
I wish I had some other way to help them in addition to our prayers, but this time all I have to offer is my own hope in God that one day he will he ok. Parker will be a new person and when he comes out of this darkness he lives under he will be able to look back and find the positive things that happened in his long journey.
I am personally praying he will never lose faith that he will be okay and all of this happens for a reason, it's not God trying to torture him in any way.
Here is a link to the most recent post.
Psalm 23:4
Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.
Sunday, October 25, 2015
Babesia Symptoms
Earlier this week I posted about how I have stayed more tired than usual. I am generally tired but I can stay functional...well most of the time.
This past week was different. It was like, I would trade anything for sleep. It was like nothing was worth getting out of bed and using my valuable energy.
Yesterday something occurred to me. I noticed my abdomen was beginning to feel sore, around ribcage. Turns out this is the spleen area. The spleen processes blood cells, which babesia infects. So I think I may be going through a babesia flair...
In the past I have taken Cumanda and Quina from Nutramedix, and the herb cryptolepis.
The Cumanda and Quina seemed to work a little, but they just weren't what I needed. The effects just didn't last for me. That's when I tried the Cryptolepis tincture. It was like a magic bullet for my fatigue! The results were almost miraculous. Within a few hours of the first dose (15 drops) I felt better. I walked the dog for fun and did some other stuff I enjoy doing on good days.
I started at 15 drops 3x daily and quickly moved up to 1/2 tsp 3x, I did this for 5 months.
I stopped taking it in August because I was no longer feeling the affects. I wasn't having the same fatigue I was having before either. I haven't taken any anti-malarials since then...Maybe its time to give it a shot again.
I've never tried red root, I think I will order some of that also and report back!
On another note, I follow this blog- http://victoriawilguess.blogspot.com/ by Victoria Wilguess. She has suffered from Lyme Disease also. Like me she went several years without an answer or any treatments. Another thing that hit close to home was that she was also a teenager when she got sick. This is harder than most people can understand, unless you have been in the situation personally.
True friends to support you and family members to understand you can be scarce. That alone can bring someone down, on top of that she was a teenager. That is a stressful time for everyone at some point. She somehow stayed positive. I believe its because of her faith in God. I know that's what she will tell you.
Victoria has been going through some new treatments lately. Included a stem cell transplant, that she will have to go to Germany for.
Having a chronic illness is hard. There is uncertainty, pain, and a distancing from the reality previously known.
Victoria (and myself) had to grow up, just to learn to cope. This is not easy for kids who were used to running around and playing games. You cant explain to another 12 year old your sitting out of tag because your tired or in pain.
Victoria has been on my mind and in my prayers the past few weeks. It would be great if you could keep her in your prayers, she is going through a lot :)
This past week was different. It was like, I would trade anything for sleep. It was like nothing was worth getting out of bed and using my valuable energy.
Yesterday something occurred to me. I noticed my abdomen was beginning to feel sore, around ribcage. Turns out this is the spleen area. The spleen processes blood cells, which babesia infects. So I think I may be going through a babesia flair...
In the past I have taken Cumanda and Quina from Nutramedix, and the herb cryptolepis.
The Cumanda and Quina seemed to work a little, but they just weren't what I needed. The effects just didn't last for me. That's when I tried the Cryptolepis tincture. It was like a magic bullet for my fatigue! The results were almost miraculous. Within a few hours of the first dose (15 drops) I felt better. I walked the dog for fun and did some other stuff I enjoy doing on good days.
I started at 15 drops 3x daily and quickly moved up to 1/2 tsp 3x, I did this for 5 months.
I stopped taking it in August because I was no longer feeling the affects. I wasn't having the same fatigue I was having before either. I haven't taken any anti-malarials since then...Maybe its time to give it a shot again.
I've never tried red root, I think I will order some of that also and report back!
On another note, I follow this blog- http://victoriawilguess.blogspot.com/ by Victoria Wilguess. She has suffered from Lyme Disease also. Like me she went several years without an answer or any treatments. Another thing that hit close to home was that she was also a teenager when she got sick. This is harder than most people can understand, unless you have been in the situation personally.
True friends to support you and family members to understand you can be scarce. That alone can bring someone down, on top of that she was a teenager. That is a stressful time for everyone at some point. She somehow stayed positive. I believe its because of her faith in God. I know that's what she will tell you.
Victoria has been going through some new treatments lately. Included a stem cell transplant, that she will have to go to Germany for.
Having a chronic illness is hard. There is uncertainty, pain, and a distancing from the reality previously known.
Victoria (and myself) had to grow up, just to learn to cope. This is not easy for kids who were used to running around and playing games. You cant explain to another 12 year old your sitting out of tag because your tired or in pain.
Victoria has been on my mind and in my prayers the past few weeks. It would be great if you could keep her in your prayers, she is going through a lot :)
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