This is a new song called Even If by Kutless. It talks about praising God even in the bad times. Even when the (earthly) healing doesn't come. Even when we don't see God's plan. Even when His plan doesn't match our plan. Even when we just don't understand or see how this can be God's plan.
We pray for healing for so many people. We pray for physical healing. We pray for spiritual healing. We pray for emotional healing. We pray for marriages to be healed. We pray for relationships to be healed. And we just pray for every situation to be healed.
But as I'm learning more and more, sometimes earthly healing isn't God's plan. Sometimes He has a plan much bigger than healing on this earth. But when someone or a situation isn't healed, it is still so hard even if we believe that it's God's will and that He has something better planned. We are human and we still question God's plan sometimes when the healing doesn't come. My best friend Rebecca didn't receive earthly healing. She received eternal healing on March 10th, 2012 when she went to be with Jesus, and that's the best kind. But that doesn't mean it doesn't still hurt. But even if the healing doesn't come, we will praise God. I have a lot of friends with Lyme (and other diseases) who are praying for healing, including myself. I believe 110% that God has the ability to heal us on this earth, and that He will heal us forever in Heaven one day. But, earthly healing is sometimes not in the plan. We have to learn to praise God even if that is the case, as it is so many times.
"Sometimes all we have to hold on to
Is what we know is true
Of who You are
So when the heartache hits like a hurricane
That can never change who You are
And we trust in who You are
(Chorus)
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
Lord we know Your ways are not our ways
So we set our faith in who You are
And even though You reign high above us
You tenderly love us
We know Your heart
We rest in who You are
Chorus
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing your praise
Chorus
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come"
Monday, November 12, 2012
Sunday, November 11, 2012
Why I haven't posted lately
I know I have been absent from posting the past few weeks, maybe even months. There are a lot of reasons why I haven't posted. I've actually started quite a lot of posts, but I haven't finished most of them. Hopefully soon I'll be able to post more regularly.
Before you read this post, please know that I am starting to do better! It's been a rough several months (okay, well if we're being honest here, rough several years, but specifically the past couple months), but I am getting through it, and am starting to get out of the low point I've been experiencing. Everyone has ups and downs, and lately it's been a down time for me, but I am doing okay. God is faithful and seeing me through this season as He always has!
When I first started this blog in the summer of 2009, about six months after I was diagnosed, I thought it was only to keep my family and friends updated when I went to Reno, Nevada to my Lyme doctor. My mom and I were fixing to go to Nevada for a month when I started this blog. Since we live in Oklahoma, I thought it would be nice to have a place where people could get updates on me as I went through treatments across the country whenever they wanted.
I really never imagined that my blog would be read worldwide, and from what I'm told, be helpful to so many people. It's only through God that that has happened. He is able to use anyone in any situation if they are willing to be used by Him, no matter how bad the situation might be!
Now, since my blog is not just read by my family and friends and is read by
so many people in so many different situations, I try to spread awareness for a disease that is 100% preventable. I also want to share how I get through this with God so that hopefully others are encouraged and can see that they can also get through anything with God. I never planned to sugar coat anything, and I don't think I have, so I'm not starting now.
Everyone struggles in life. While it's good to be positive and upbeat, it's also good to share your struggles so that you can encourage someone going through the same struggles, just like the Bible says God enables us to do.
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. – 2 Corinthians 1:3-4
Obviously I haven't posted every detail of this long journey, but I've tried to show what it's like to live with this disease to encourage others going through the same illness, or to help family and friends of those who are sick better understand what we go through on a daily basis. Unless you have this disease or are really close to someone who does, it's hard to totally understand the reality of what it's like to live with a late stage, chronic, neurological disease everyday, for years and years. Having a chronic illness is enough to deal with already, but with this disease we also deal with the politics. I have a post that I'm in the process of writing that shows what happens when I go to the ER and the doctor doesn't believe in Lyme and treats me so bad that we file a complaint. So that on top of the illness makes this disease very, very challenging and complicated.
So as I mentioned, there are several reasons I haven't posted lately.
A lot of days my brain is worn out just from going to class and doing homework. It can barely handle that, and then to try and blog after that seems almost impossible some days (I've been working on this post for over a month). Since the disease is in my brain, it causes a lot of problems. For example my concentration and memory have been the things that have suffered the most. My brain gets overwhelmed very easily since I was out of school for so long (on and off since 8th grade and then the last full three years of high school), and there is so much I don't remember. My memory is terrible. Just a couple weeks ago I hung out with a friend from out of town, and the next day, I knew I had hung out with someone and talked to them about certain things, but it literally took me hours to remember who it was. It's hard to admit that it's that bad. I want to deny that this happens a lot, but it's very noticeable when people bring up things that we did or that I said and I have no memory of it.
Not remembering the Friday that I hung out with my friend also had to do with the fact that I had gone to the ER on Thursday night, the night before, so I still had lots of medicine in my system. Unfortunately, that's another reality right now. The bacteria in my brain and the medicines I have to take both cause memory problems, so when you put those two together (especially IV medicines in the hospital), I don't remember a lot. I also went to my one class on that Friday, but I don't remember much of that either. Apparently I had the hiccups and they were REALLY loud during class, but I have no memory of that. For some reason, sometimes after getting certain IV medications, I get really bad hiccups the day after. It doesn't happen every time, but I've noticed it more frequently. I'm told it was really funny in class, but again I don't remember it.
Another reason that I haven't posted is that I just haven't known what to say. I'm struggling. I'm tired. Not just tired, but exhausted. Physically and mostly emotionally. Lately I've also been mad. I'm not mad at anyone in particular, I'm just mad about what's happened and what's happening. I miss my old life. The life where school came easy to me. The life where I performed in musicals and took voice lessons. The life where my biggest worry was memorizing lines for a musical. The life where I was active in school and church. The life where I hung out with my friends everyday. The life where I could get up early in the morning and go until late at night and even be up a lot of the night at sleepovers. The life where I was able to be my age. I've had to grow up so much since I got sick and at times it feels like I'm 80 years old because of my memory and how weak I get.
One of the things I've been most frustrated about are the brain problems I mentioned earlier. My brain is just not the same as it used to be. A lot of times, I feel bad for mentioning it or getting upset because it's not like I'm getting bad grades. I'm really not. It's the fact that I now study for 7 hours for a test and still make a letter grade below what I used to make without studying much at all. I don't think I've missed my old life as much as I have this semester. I'm ready to be well and be able to do things normal people my age do. I've missed out on so much because I got really sick at the beginning of high school and missed the rest of it. And it's so frustrating that at age 19, I have little memory of what are supposed to be the best years of my life because of the bacteria in my brain, and all the medicines I've had to take over the past 4 years. It's frustrating to say the least.
I started counseling about a month ago and that has been really good. They give free counseling here at school! Everyone has told me that I should have started going to counseling when I got sick, but I never did. I now realize why I haven't wanted to until now. Every single one of the doctors who thinks Lyme doesn't exist, or thinks I'm making things up for attention has told me that all I need to do is go to counseling because all my physical symptoms are in my head. So why would I want to go to counseling when from the stupid doctor's perspective, that's all that's wrong with me? I felt like going would be giving in to them. But, this semester has been very rough and so I decided I needed to go. It's NOT giving in to the stupid doctors, and they are NOT winning by me going. My counselor is helping me see that.
Another thing that I've been struggling with is that one of my best friends isn't here like she should be. It's been about 8 months since she went to be with Jesus. In one way, I am so thankful that she is safe in the arms of Jesus in Heaven. I am so thankful that she is not in pain. That she doesn't have cancer anymore. That she has no tears or fears or pain. She's exactly how God made her to be and is in the best place for eternity with God. And one day, hopefully after I've lived a long life, I'll join her in Heaven and see her again. So I really am very thankful that she is safe with Jesus, perfect and whole.
But I miss her so much. She's supposed to be here. We were "sick buddies" as we called each other. We had gone to church together for as long as I can remember, but she was a grade ahead of me so we weren't close friends. But we were diagnosed within a month of each other, and immediately became best friends since we understood what each other was going through. No one else could really understand. She was diagnosed with Ewings Sarcoma in January of 2009, and I was diagnosed with Late Stage, Neurological Lyme Disease on December 3rd, 2008 (but I had been sick for 2 years before that and no one could really figure out what was wrong). So since we were diagnosed and became best friends, we hung out while everyone else was in school, whether it was in the hospital or one of our houses. We texted almost constantly and shared our frustrations with what (well meaning) people said to us that made us mad when people don't know what to say. We talked to each other about what it was like to be sick for so long and just the frustrations that went along with it.
But the most important thing was that we talked to each other about was our faith in God. I can honestly say that neither of us ever got mad at God. A long time ago we realized how much we needed God to get through our illnesses. We both trusted God's plan no matter how hard it was and how much we didn't like it. Most times we didn't understand what God was doing, but we never got mad at Him. We were able to talk about everything because we were the only ones who really understood. No matter how hard you try, you just can't understand what it's like to be sick every single day for years unless you've been through it. Even the closest friends and family can't completely understand because they aren't sick every single day.
So when I've been having medical problems, or when people say things that just shouldn't be said, I want to talk to her about them. One of my other best friends is in Europe on study abroad. She's been gone this whole semester and will be gone for another month. Another one of my best friends is at another college in another state. And so yes, even though I have other great friends here, several of them are not. Obviously the hardest one is not having the friend who really understood what I was going through here. So now when I want to talk to Rebecca about medical things or my frustrations, I talk to God. And that's been great for me to talk to Him more, but I still miss her. I'm just so thankful that she's safe with Jesus.
Physically, I've been struggling, but as always, I'm doing the best I can no matter what! I have an appointment with a rheumatologist on December 6th. By then, we will have been waiting for this appointment for over two months.
There are either two things going on with me. Either I have a new auto-immune disease/disorder, or the Lyme has come back very rapidly and severe. My hands are constantly swollen now, in the mornings I'm not able to close them into a fist for a while until they become unstiff (is that even a word?), I have at least 6 swollen lymph nodes in my neck and head that have been that way for a couple months now, my hands at times stop working (I'll be holding something and my hands will go limp), I have fever almost every day, I am having more fatigue, more nausea, more trouble sleeping, some breathing problems (which is why I went to the ER a couple weeks ago) and many other symptoms. Some blood work came back indicating an auto-immune problem, so with the fast onset of my symptoms, my primary care and Lyme doctor said I needed to see a rheumatologist. Once we go see him, we'll talk to my Lyme doctor (in Nevada) and see where he thinks we should go from there.
I'm still seeing my pain management team about once a month! They are incredible and are so supportive. I think we've found the right pain medicine for right now so that's great. It definitely helps and I'm so thankful to have them!
Despite all of this, I am still going to my classes! It isn't easy, but I haven't missed very many lately! I'm also still living on campus and I'm so thankful for that! I really am so thankful.
So as you can tell, the last few months have been challenging and rough. But I can honestly say that God has never left me, and that I've never been mad at him. Never. He is the only thing that is constant in this life. I can never count on anything anymore. One minute I'm fine, the next I'm doubled over in pain and in the hospital. But God is always the same through every season of life. He is my hope. My joy. My peace. My comfort. Have I questioned His plan and timing? Probably every day of my life to be honest. But that doesn't mean I question HIM.
A couple weekends ago, they had a seminar at church called "Hurting with God: learning to lament with the Psalms". It was incredible! There is a book that goes along with it, and I am working on a post about it! I know that it will encourage you no matter what season of life you're in.
Like I said, I've been working on lots of posts even though I haven't published them, so hopefully soon I will be able to finish them! I usually have to sleep several hours before and after my classes (I'm taking 3 classes) right now because I'm so exhausted, but hopefully I'll be up to posting more now that I got this huge update done!
Before you read this post, please know that I am starting to do better! It's been a rough several months (okay, well if we're being honest here, rough several years, but specifically the past couple months), but I am getting through it, and am starting to get out of the low point I've been experiencing. Everyone has ups and downs, and lately it's been a down time for me, but I am doing okay. God is faithful and seeing me through this season as He always has!
When I first started this blog in the summer of 2009, about six months after I was diagnosed, I thought it was only to keep my family and friends updated when I went to Reno, Nevada to my Lyme doctor. My mom and I were fixing to go to Nevada for a month when I started this blog. Since we live in Oklahoma, I thought it would be nice to have a place where people could get updates on me as I went through treatments across the country whenever they wanted.
I really never imagined that my blog would be read worldwide, and from what I'm told, be helpful to so many people. It's only through God that that has happened. He is able to use anyone in any situation if they are willing to be used by Him, no matter how bad the situation might be!
Now, since my blog is not just read by my family and friends and is read by
so many people in so many different situations, I try to spread awareness for a disease that is 100% preventable. I also want to share how I get through this with God so that hopefully others are encouraged and can see that they can also get through anything with God. I never planned to sugar coat anything, and I don't think I have, so I'm not starting now.
Everyone struggles in life. While it's good to be positive and upbeat, it's also good to share your struggles so that you can encourage someone going through the same struggles, just like the Bible says God enables us to do.
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. – 2 Corinthians 1:3-4
Obviously I haven't posted every detail of this long journey, but I've tried to show what it's like to live with this disease to encourage others going through the same illness, or to help family and friends of those who are sick better understand what we go through on a daily basis. Unless you have this disease or are really close to someone who does, it's hard to totally understand the reality of what it's like to live with a late stage, chronic, neurological disease everyday, for years and years. Having a chronic illness is enough to deal with already, but with this disease we also deal with the politics. I have a post that I'm in the process of writing that shows what happens when I go to the ER and the doctor doesn't believe in Lyme and treats me so bad that we file a complaint. So that on top of the illness makes this disease very, very challenging and complicated.
So as I mentioned, there are several reasons I haven't posted lately.
A lot of days my brain is worn out just from going to class and doing homework. It can barely handle that, and then to try and blog after that seems almost impossible some days (I've been working on this post for over a month). Since the disease is in my brain, it causes a lot of problems. For example my concentration and memory have been the things that have suffered the most. My brain gets overwhelmed very easily since I was out of school for so long (on and off since 8th grade and then the last full three years of high school), and there is so much I don't remember. My memory is terrible. Just a couple weeks ago I hung out with a friend from out of town, and the next day, I knew I had hung out with someone and talked to them about certain things, but it literally took me hours to remember who it was. It's hard to admit that it's that bad. I want to deny that this happens a lot, but it's very noticeable when people bring up things that we did or that I said and I have no memory of it.
Not remembering the Friday that I hung out with my friend also had to do with the fact that I had gone to the ER on Thursday night, the night before, so I still had lots of medicine in my system. Unfortunately, that's another reality right now. The bacteria in my brain and the medicines I have to take both cause memory problems, so when you put those two together (especially IV medicines in the hospital), I don't remember a lot. I also went to my one class on that Friday, but I don't remember much of that either. Apparently I had the hiccups and they were REALLY loud during class, but I have no memory of that. For some reason, sometimes after getting certain IV medications, I get really bad hiccups the day after. It doesn't happen every time, but I've noticed it more frequently. I'm told it was really funny in class, but again I don't remember it.
Another reason that I haven't posted is that I just haven't known what to say. I'm struggling. I'm tired. Not just tired, but exhausted. Physically and mostly emotionally. Lately I've also been mad. I'm not mad at anyone in particular, I'm just mad about what's happened and what's happening. I miss my old life. The life where school came easy to me. The life where I performed in musicals and took voice lessons. The life where my biggest worry was memorizing lines for a musical. The life where I was active in school and church. The life where I hung out with my friends everyday. The life where I could get up early in the morning and go until late at night and even be up a lot of the night at sleepovers. The life where I was able to be my age. I've had to grow up so much since I got sick and at times it feels like I'm 80 years old because of my memory and how weak I get.
One of the things I've been most frustrated about are the brain problems I mentioned earlier. My brain is just not the same as it used to be. A lot of times, I feel bad for mentioning it or getting upset because it's not like I'm getting bad grades. I'm really not. It's the fact that I now study for 7 hours for a test and still make a letter grade below what I used to make without studying much at all. I don't think I've missed my old life as much as I have this semester. I'm ready to be well and be able to do things normal people my age do. I've missed out on so much because I got really sick at the beginning of high school and missed the rest of it. And it's so frustrating that at age 19, I have little memory of what are supposed to be the best years of my life because of the bacteria in my brain, and all the medicines I've had to take over the past 4 years. It's frustrating to say the least.
I started counseling about a month ago and that has been really good. They give free counseling here at school! Everyone has told me that I should have started going to counseling when I got sick, but I never did. I now realize why I haven't wanted to until now. Every single one of the doctors who thinks Lyme doesn't exist, or thinks I'm making things up for attention has told me that all I need to do is go to counseling because all my physical symptoms are in my head. So why would I want to go to counseling when from the stupid doctor's perspective, that's all that's wrong with me? I felt like going would be giving in to them. But, this semester has been very rough and so I decided I needed to go. It's NOT giving in to the stupid doctors, and they are NOT winning by me going. My counselor is helping me see that.
Another thing that I've been struggling with is that one of my best friends isn't here like she should be. It's been about 8 months since she went to be with Jesus. In one way, I am so thankful that she is safe in the arms of Jesus in Heaven. I am so thankful that she is not in pain. That she doesn't have cancer anymore. That she has no tears or fears or pain. She's exactly how God made her to be and is in the best place for eternity with God. And one day, hopefully after I've lived a long life, I'll join her in Heaven and see her again. So I really am very thankful that she is safe with Jesus, perfect and whole.
But I miss her so much. She's supposed to be here. We were "sick buddies" as we called each other. We had gone to church together for as long as I can remember, but she was a grade ahead of me so we weren't close friends. But we were diagnosed within a month of each other, and immediately became best friends since we understood what each other was going through. No one else could really understand. She was diagnosed with Ewings Sarcoma in January of 2009, and I was diagnosed with Late Stage, Neurological Lyme Disease on December 3rd, 2008 (but I had been sick for 2 years before that and no one could really figure out what was wrong). So since we were diagnosed and became best friends, we hung out while everyone else was in school, whether it was in the hospital or one of our houses. We texted almost constantly and shared our frustrations with what (well meaning) people said to us that made us mad when people don't know what to say. We talked to each other about what it was like to be sick for so long and just the frustrations that went along with it.
But the most important thing was that we talked to each other about was our faith in God. I can honestly say that neither of us ever got mad at God. A long time ago we realized how much we needed God to get through our illnesses. We both trusted God's plan no matter how hard it was and how much we didn't like it. Most times we didn't understand what God was doing, but we never got mad at Him. We were able to talk about everything because we were the only ones who really understood. No matter how hard you try, you just can't understand what it's like to be sick every single day for years unless you've been through it. Even the closest friends and family can't completely understand because they aren't sick every single day.
So when I've been having medical problems, or when people say things that just shouldn't be said, I want to talk to her about them. One of my other best friends is in Europe on study abroad. She's been gone this whole semester and will be gone for another month. Another one of my best friends is at another college in another state. And so yes, even though I have other great friends here, several of them are not. Obviously the hardest one is not having the friend who really understood what I was going through here. So now when I want to talk to Rebecca about medical things or my frustrations, I talk to God. And that's been great for me to talk to Him more, but I still miss her. I'm just so thankful that she's safe with Jesus.
Physically, I've been struggling, but as always, I'm doing the best I can no matter what! I have an appointment with a rheumatologist on December 6th. By then, we will have been waiting for this appointment for over two months.
There are either two things going on with me. Either I have a new auto-immune disease/disorder, or the Lyme has come back very rapidly and severe. My hands are constantly swollen now, in the mornings I'm not able to close them into a fist for a while until they become unstiff (is that even a word?), I have at least 6 swollen lymph nodes in my neck and head that have been that way for a couple months now, my hands at times stop working (I'll be holding something and my hands will go limp), I have fever almost every day, I am having more fatigue, more nausea, more trouble sleeping, some breathing problems (which is why I went to the ER a couple weeks ago) and many other symptoms. Some blood work came back indicating an auto-immune problem, so with the fast onset of my symptoms, my primary care and Lyme doctor said I needed to see a rheumatologist. Once we go see him, we'll talk to my Lyme doctor (in Nevada) and see where he thinks we should go from there.
I'm still seeing my pain management team about once a month! They are incredible and are so supportive. I think we've found the right pain medicine for right now so that's great. It definitely helps and I'm so thankful to have them!
Despite all of this, I am still going to my classes! It isn't easy, but I haven't missed very many lately! I'm also still living on campus and I'm so thankful for that! I really am so thankful.
So as you can tell, the last few months have been challenging and rough. But I can honestly say that God has never left me, and that I've never been mad at him. Never. He is the only thing that is constant in this life. I can never count on anything anymore. One minute I'm fine, the next I'm doubled over in pain and in the hospital. But God is always the same through every season of life. He is my hope. My joy. My peace. My comfort. Have I questioned His plan and timing? Probably every day of my life to be honest. But that doesn't mean I question HIM.
A couple weekends ago, they had a seminar at church called "Hurting with God: learning to lament with the Psalms". It was incredible! There is a book that goes along with it, and I am working on a post about it! I know that it will encourage you no matter what season of life you're in.
Like I said, I've been working on lots of posts even though I haven't published them, so hopefully soon I will be able to finish them! I usually have to sleep several hours before and after my classes (I'm taking 3 classes) right now because I'm so exhausted, but hopefully I'll be up to posting more now that I got this huge update done!
Tuesday, November 6, 2012
Wednesday, October 24, 2012
Wednesday, October 3, 2012
Update 10/3/12
(If you don't want to read this huge long post, scroll down to the bottom where I've listed the blessings in my life right now, and what to pray for specifically)
(I hope this all makes sense. I'm a little worn out! So bear with me)
I have so many posts about school and random things almost ready to post, but things keep coming up to where I haven't been able to finish them. I know I've been terrible at updating lately! There's just a lot going on as usual.
School is going well! I'm really enjoying it! I love my three classes, and I love hanging out with my friends. I'm very thankful to have a little bit of normalcy. I have several posts about school to share hopefully soon!!
Right now, I'm dealing with a lot of acute issues. For a little over 3 weeks, I've had lots of painful, swollen lymph nodes in my neck (and the doctor found them in my head) and a couple other places. At first the lymph nodes would swell up on and off. They are just big lumps under the skin. But soon after they started swelling, I began having other symptoms too. With the swollen lymph nodes, I've had fever, severe fatigue, on and off headache and sore throat, more nausea and pain than normal, and I'm not able to sleep well.
I finally went to my primary care doctor yesterday about it because it's gotten worse lately. I thought the swollen lymph nodes and other symptoms would have gone away by now, so I was just planning to wait it out. But these symptoms have been keeping me from being able to do things. I've missed some classes here and there and when I am able to go to class, that really wears me out and I'm not able to be out much besides that. It's not terrible, but it could be a lot better.
I also had a couple other things to discuss with my doctor.
As if having a virus and possibly arthritis issues aren't enough, this past Saturday, I had a fun little trip to the ER because of what feels like another kidney stone. The ER doctor was the one who I saw this past spring when the bone pain I have started. It was the first time we went to a new hospital because our insurance covers more there. In the spring, he decided he didn't like my diagnosis of Lyme, and wouldn't do anything for me. Even the head of the ER and the nurses tried to convince him to help me because they could see how much pain I was in and they thought it was RIDICULOUS that he wouldn't do anything. One of them was tearing up because of how much pain I was in, and how badly I was treated for no reason other than the doctor's personal opinion, not medical reasons.
When I had the first kidney stone a little over a month ago, we went back to this hospital because it was an acute issue and that's where our insurance covers the most. We had a different doctor, and he was wonderful! He even offered to admit me for pain control. But once the pain was under control, I wanted to go home. I was fine for several days, but was woken up with worse pain and went back to that ER and it was the same great doctor. He once again offered to admit me, but I once again decided to go home. But, two hours later, I realized I needed to be admitted, so we went back to the ER and I was admitted. That turned out to be good because the kidney stone on the way out caused damage, and I was very sick. I was bleeding a lot and was in so much pain, couldn't keep things down, and my heart rate was very, very high. The doctor did the right thing by having me admitted. I went through lots of tests and it took several days to get better. So, that hospital was great for an acute issue, just not for the whole "Lyme debate".
This Saturday morning when I woke up at 4:30am with vomiting and abdominal pain that felt like the other kidney stone, we decided to go back to that ER since I had another acute issue, and it's the cheapest hospital (which really doesn't mean that much since it's still really expensive, but hey, it's a little help).
So Saturday morning, I was in the ER for an ACUTE issue, not Lyme related. Unfortunately, it was the doctor we had the first time we went to that hospital for the bone pain. He was not helpful and once again, I was not treated like I should have been. He didn't get the pain under control, and didn't want to really do any tests besides blood and urine tests because "you've had many tests before and nothing has showed up, and it would be cruel to subject you to more radiation". Oh, and judging me from the last time I was here, deciding you think I was making up the bone pain, and now this kidney pain but won't do any more tests because when you find something, you would actually have to treat me is NOT cruel?! I know he remembered me from last time, and he didn't want to deal with me. I have a whole post I'm writing on what happens when doctors decide they don't believe you, so be watching for that. It's a huge part of having Lyme, and it will help people understand the controversy more and what we go through with doctors.
So, we think I have another kidney stone, but don't know where it is, how big it is, or anything at all since the doctor was so very rude and judgmental. He didn't want to help me since he had decided a long time ago that I make things up. Thankfully, we got some supplements and homeopathic medicines to help with kidney/bladder problems and stones and it's helping a lot.
Yesterday my primary care doctor did an abdominal X-ray to see if she could see the stone, but it didn't show up, which isn't surprising. Apparently only a certain kind of stone shows up and there are several different kinds. But the pain is currently better so I'm very thankful. Saturday was a very hard day because honestly, I'm so tired of dealing with how doctors refuse to help me because of assumptions that they make without even knowing the whole story. They won't listen when you try to talk because they have already made up their minds. Again, I'm working on a post about that.
Yesterday I had six X-rays on my hands, two X-rays on my abdomen, and they tried three times to get blood. Well, twice in my arms and hands, and once in a finger stick which was still unsuccessful. They told me to come back tomorrow (which was today) to try again for blood work.
I went into the lab for blood work today, and it was crazy. There were two lab technicians helping because they knew it would be hard to get blood. They needed 9 or 10 vials of blood. I'm so used to needles, IVs, and blood draws that they really don't bother me. Yes they hurt and aren't comfortable, but I'm way past the point of them bothering me. I'm able to laugh and carry on conversations while being stuck with so many needles. Today the technicians acted like THEY were the ones being stuck with needles like crazy. So yesterday they tried for 30 minutes and didn't get anything with two regular sticks and a finger prick. Today, I was there for 50 minutes and 5 sticks later, they had the minimum amount of blood that they needed. Each person is only allowed to stick you three times which is why there had to be two people drawing my blood. They kept saying things like, "I hate doing this, are you sure you want me to continue sticking you, I don't want to do it there because it will hurt a lot". I was like oh my goodness you are being so dramatic. I'm sitting here TELLING you that I don't care where you try, or how many times you try because I need these tests done. Don't keep acting like I'm inconveniencing you when I'm telling you to keep trying, and I'm still laughing and carrying on conversations while you stick me in every vein possible. Most people would be done after stick number one, and I let you try 8 times in two days, 5 times just in the past 50 minutes. One lady acted so annoyed that it was taking so long. Most people would be so mad and not let them continue, so she needs to be thankful that I was so patient and willing to let them keep sticking me. I was enjoying talking to them so I didn't care how long it took or how many sticks it took! I just wanted the tests done so we can find out what's wrong and I can start feeling better soon!
So between all these symptoms and trying to keep up with school, it's been crazy! I'm not behind in my classes, and I'm actually doing really well in them even with everything going on! I feel like I'm able to balance things a little better than last year. I do ask that you pray for peace and rest for me. I'm a little frustrated that so many things keep coming up that I'm having to deal with. It's just one thing after another, and I never seem to get a break. But that isn't stopping me from going to my classes or fighting this battle! Yes, I might miss more classes than most people, but I'm staying caught up. I'm very thankful for being able to take three classes this semester, and as I said, I have several posts to share about school! It's just taking me a while to write posts because I'm so worn out and a little out of it from all the medicines I'm having to take.
Here are some great blessings lately despite all that's going on:
Here are some specific things to pray for. People always say that they want to know specifically what to pray for, so here you go! I can't tell you how much I appreciate the prayers and encouragement.
I love these verses and they are so true all the time, but especially right now.
"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
2 Corinthians 4:8-9
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 16-18
Thank you again for the prayers and encouragement!!!
(I hope this all makes sense. I'm a little worn out! So bear with me)
I have so many posts about school and random things almost ready to post, but things keep coming up to where I haven't been able to finish them. I know I've been terrible at updating lately! There's just a lot going on as usual.
School is going well! I'm really enjoying it! I love my three classes, and I love hanging out with my friends. I'm very thankful to have a little bit of normalcy. I have several posts about school to share hopefully soon!!
Right now, I'm dealing with a lot of acute issues. For a little over 3 weeks, I've had lots of painful, swollen lymph nodes in my neck (and the doctor found them in my head) and a couple other places. At first the lymph nodes would swell up on and off. They are just big lumps under the skin. But soon after they started swelling, I began having other symptoms too. With the swollen lymph nodes, I've had fever, severe fatigue, on and off headache and sore throat, more nausea and pain than normal, and I'm not able to sleep well.
I finally went to my primary care doctor yesterday about it because it's gotten worse lately. I thought the swollen lymph nodes and other symptoms would have gone away by now, so I was just planning to wait it out. But these symptoms have been keeping me from being able to do things. I've missed some classes here and there and when I am able to go to class, that really wears me out and I'm not able to be out much besides that. It's not terrible, but it could be a lot better.
I also had a couple other things to discuss with my doctor.
Several weeks ago, or right before I started having lymph node swelling, I noticed that when I woke up in the mornings, my hands were very stiff and I couldn't close them into a fist for a while after I got up. I also started experiencing a lot of pain in my hands. Just in the past couple of weeks, I noticed that my knuckles are swollen. So I have stiffness when I wake up, it's hard to use my hands first thing in the morning, they are swollen all the time now, and they are painful most of the time. My algebra class is in the mornings, and a couple of times I have had to tell the teacher that I can't write anymore because my hands were hurting so much and were still too stiff.
Yesterday when I saw my doctor, she noticed the swelling in my hands before I even told her that I was having problems, so she wanted to do X-rays on them. She said her first thought after seeing the X-rays, the swelling, and my symptoms, is that it looks like rheumatoid arthritis. This does NOT mean I have rheumatoid arthritis for sure. She cannot diagnose me. But, something is going on with my hands, and rheumatoid arthritis was her first thought, so we will see what the next step needs to be in figuring out the cause of these problems.
She agrees with my pain doctor that the swollen lymph nodes and other symptoms are from some sort of virus, and her first thought was mono because of my symptoms, and the swollen lymph nodes point directly to that. Mono can be caused by several different viruses. Once again, this does NOT mean I have mono for sure. She is running lots of blood tests to figure out what's going on. My flu and strep test was negative which is great!
As if having a virus and possibly arthritis issues aren't enough, this past Saturday, I had a fun little trip to the ER because of what feels like another kidney stone. The ER doctor was the one who I saw this past spring when the bone pain I have started. It was the first time we went to a new hospital because our insurance covers more there. In the spring, he decided he didn't like my diagnosis of Lyme, and wouldn't do anything for me. Even the head of the ER and the nurses tried to convince him to help me because they could see how much pain I was in and they thought it was RIDICULOUS that he wouldn't do anything. One of them was tearing up because of how much pain I was in, and how badly I was treated for no reason other than the doctor's personal opinion, not medical reasons.
When I had the first kidney stone a little over a month ago, we went back to this hospital because it was an acute issue and that's where our insurance covers the most. We had a different doctor, and he was wonderful! He even offered to admit me for pain control. But once the pain was under control, I wanted to go home. I was fine for several days, but was woken up with worse pain and went back to that ER and it was the same great doctor. He once again offered to admit me, but I once again decided to go home. But, two hours later, I realized I needed to be admitted, so we went back to the ER and I was admitted. That turned out to be good because the kidney stone on the way out caused damage, and I was very sick. I was bleeding a lot and was in so much pain, couldn't keep things down, and my heart rate was very, very high. The doctor did the right thing by having me admitted. I went through lots of tests and it took several days to get better. So, that hospital was great for an acute issue, just not for the whole "Lyme debate".
This Saturday morning when I woke up at 4:30am with vomiting and abdominal pain that felt like the other kidney stone, we decided to go back to that ER since I had another acute issue, and it's the cheapest hospital (which really doesn't mean that much since it's still really expensive, but hey, it's a little help).
So Saturday morning, I was in the ER for an ACUTE issue, not Lyme related. Unfortunately, it was the doctor we had the first time we went to that hospital for the bone pain. He was not helpful and once again, I was not treated like I should have been. He didn't get the pain under control, and didn't want to really do any tests besides blood and urine tests because "you've had many tests before and nothing has showed up, and it would be cruel to subject you to more radiation". Oh, and judging me from the last time I was here, deciding you think I was making up the bone pain, and now this kidney pain but won't do any more tests because when you find something, you would actually have to treat me is NOT cruel?! I know he remembered me from last time, and he didn't want to deal with me. I have a whole post I'm writing on what happens when doctors decide they don't believe you, so be watching for that. It's a huge part of having Lyme, and it will help people understand the controversy more and what we go through with doctors.
So, we think I have another kidney stone, but don't know where it is, how big it is, or anything at all since the doctor was so very rude and judgmental. He didn't want to help me since he had decided a long time ago that I make things up. Thankfully, we got some supplements and homeopathic medicines to help with kidney/bladder problems and stones and it's helping a lot.
Yesterday my primary care doctor did an abdominal X-ray to see if she could see the stone, but it didn't show up, which isn't surprising. Apparently only a certain kind of stone shows up and there are several different kinds. But the pain is currently better so I'm very thankful. Saturday was a very hard day because honestly, I'm so tired of dealing with how doctors refuse to help me because of assumptions that they make without even knowing the whole story. They won't listen when you try to talk because they have already made up their minds. Again, I'm working on a post about that.
Yesterday I had six X-rays on my hands, two X-rays on my abdomen, and they tried three times to get blood. Well, twice in my arms and hands, and once in a finger stick which was still unsuccessful. They told me to come back tomorrow (which was today) to try again for blood work.
I went into the lab for blood work today, and it was crazy. There were two lab technicians helping because they knew it would be hard to get blood. They needed 9 or 10 vials of blood. I'm so used to needles, IVs, and blood draws that they really don't bother me. Yes they hurt and aren't comfortable, but I'm way past the point of them bothering me. I'm able to laugh and carry on conversations while being stuck with so many needles. Today the technicians acted like THEY were the ones being stuck with needles like crazy. So yesterday they tried for 30 minutes and didn't get anything with two regular sticks and a finger prick. Today, I was there for 50 minutes and 5 sticks later, they had the minimum amount of blood that they needed. Each person is only allowed to stick you three times which is why there had to be two people drawing my blood. They kept saying things like, "I hate doing this, are you sure you want me to continue sticking you, I don't want to do it there because it will hurt a lot". I was like oh my goodness you are being so dramatic. I'm sitting here TELLING you that I don't care where you try, or how many times you try because I need these tests done. Don't keep acting like I'm inconveniencing you when I'm telling you to keep trying, and I'm still laughing and carrying on conversations while you stick me in every vein possible. Most people would be done after stick number one, and I let you try 8 times in two days, 5 times just in the past 50 minutes. One lady acted so annoyed that it was taking so long. Most people would be so mad and not let them continue, so she needs to be thankful that I was so patient and willing to let them keep sticking me. I was enjoying talking to them so I didn't care how long it took or how many sticks it took! I just wanted the tests done so we can find out what's wrong and I can start feeling better soon!
So between all these symptoms and trying to keep up with school, it's been crazy! I'm not behind in my classes, and I'm actually doing really well in them even with everything going on! I feel like I'm able to balance things a little better than last year. I do ask that you pray for peace and rest for me. I'm a little frustrated that so many things keep coming up that I'm having to deal with. It's just one thing after another, and I never seem to get a break. But that isn't stopping me from going to my classes or fighting this battle! Yes, I might miss more classes than most people, but I'm staying caught up. I'm very thankful for being able to take three classes this semester, and as I said, I have several posts to share about school! It's just taking me a while to write posts because I'm so worn out and a little out of it from all the medicines I'm having to take.
Here are some great blessings lately despite all that's going on:
- Being able to take three classes
- Being able to live in the dorms (I do go home a lot to rest)
- Living so close to home so I'm able to go home to rest when I need to! Living 8 minutes from campus is such a blessing
- Having such a great, supportive family who fights for me
- Having such a wonderful church family who prays for me constantly
- Having such great friends literally all over the world
- Getting encouraging comments, emails, and facebook messages from people all over the world who have found my blog
- Being able to get medicine that helps keep me more comfortable
- Being able to encourage others with chronic illnesses because of what God has taught me through my illness
Here are some specific things to pray for. People always say that they want to know specifically what to pray for, so here you go! I can't tell you how much I appreciate the prayers and encouragement.
- Answers about the virus I have, and that if it is Mono, that it will go away soon since I've already had it for at least three weeks
- Answers and directions for us to figure out what is going on with my hands, and that if it is Rheumatoid Arthritis, that we are able to find a great rheumatologist, since you know how hard it is to find supportive doctors
- Peace and rest for me- I'm physically and emotionally worn out from this journey, and am ready for a break. But God is giving me the strength to continue!
- Peace and rest for my family and friends, but especially my family- it's so hard for them to see me hurting and sick, and that they aren't able to immediately fix it. They also deal with so many medical bills and have to fight the insurance company so much because they don't pay for a lot of my treatments because "Lyme doesn't exist".
- Complete healing- God has the ability to heal me from all these problems if that is His will on this earth, no matter what the doctors say! He is so much bigger than anything we face.
I love these verses and they are so true all the time, but especially right now.
"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
2 Corinthians 4:8-9
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 16-18
Thank you again for the prayers and encouragement!!!
Saturday, September 29, 2012
I'm not into politics, but this REALLY caught my attention. Romney has vowed to fight Lyme Disease and get funding for it since it's an epidemic and has absolutely NO funding at all. Here's what he said. "Clearly this disease is spreading throughout the nation. More needs to be done," We are left to pay for treatments out of pocket, travel across the country/world for treatments because doctors are getting their licenses taken away for treating it, we are having to research for ourselves and educate doctors, we are not even treated like human beings, and there is no funding to find a cure, or even a standard protocol. There is NO protocol at all. So we are left to make life saving decisions on our own. Decisions that will either save our lives, or make us sicker. Lyme is found in every state, and people that I know are dying from it because they can't afford treatment, and like me, we were diagnosed too late, and now it's neurological and has gotten into every organ, tissues, bones, joints, and even our heart, and brain. I also have at least 4 co-infections which sometimes are more dangerous than the Lyme bacteria. You almost always get more than one disease from a tick. This is all 100% preventable, but if it's not caught early, it is devastating and life threatening because it affects every part of the body. I'm so thankful that Lyme is starting to get attention, but please pray that people start to become aware of it and start to help get the funding and awareness it needs to find a cure and save lives.
Sunday, September 23, 2012
Encouraging Song - Week 5 - (One Thing Remains)
I know I missed a week or two of encouraging songs because things have been crazy with school, but here is another one of my favorite songs! I recently heard this song on the radio and it immediately spoke to me.
One Thing Remains by Kristian Stanfill
"Higher than the mountains
That I face
Stronger than the power
Of the grave
Constant in the trial and the change
One thing remains
One thing remains
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love
Because on and on and
On and on it goes
It overwhelms
And satisfies my soul
And I never, ever,
Have to be afraid
One thing remains
One thing remains
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love
In death, in life
I'm confident and covered
By the power of Your great love
My debt is paid
There's nothing that can separate
My heart from Your great love
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love"
I will post soon about school and how things are going! I know I haven't been good about that, but I will update soon!
One Thing Remains by Kristian Stanfill
"Higher than the mountains
That I face
Stronger than the power
Of the grave
Constant in the trial and the change
One thing remains
One thing remains
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love
Because on and on and
On and on it goes
It overwhelms
And satisfies my soul
And I never, ever,
Have to be afraid
One thing remains
One thing remains
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love
In death, in life
I'm confident and covered
By the power of Your great love
My debt is paid
There's nothing that can separate
My heart from Your great love
Your love never fails
It never gives up
It never runs out on me
(x3)
Your love"
I will post soon about school and how things are going! I know I haven't been good about that, but I will update soon!
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