Wednesday, December 5, 2012

Prayer Request

I am blessed to have SO many prayer warriors! You all bring me to tears with your comments, prayers, emails, and support. I know you are always there for me and pray for me.

Today I come asking for prayers for one of my dear friends, Alisa, and her husband, Jaime.

I've been so blessed to get to know Alisa, even though it's been through our shared journey with Lyme. She is incredible and is such a light to everyone! Alisa was told that she most likely wouldn't be able to get pregnant (like many with Lyme), but earlier this year they found out that they were expecting!

But around their 12 or 13 week ultrasound, they found out that their baby boy would not survive long outside of her womb because of Anencephaly, and that God would take him home shortly after birth. The doctors said that most mothers terminate the pregnancy after this diagnosis, but Alisa and her husband, Jaime, put their trust in God to see them through this journey, however long they might have with their baby boy. Their strength is incredible. Here is what Alisa said,
"I decided we are going to carry this baby. That this beautiful handsome little boy deserved everything any other baby would get. The only difference is, im gonna have to cram all the memories with this child into the next few months while he's still inside. So my agenda is quite full. We've got soccer games to go to, swimming, video games, stories and bedtime songs to sing, teaching him to pray and who is
wonderful maker is. Telling him all the stories of who is his Parents are, and 
the wonderful extended amount of family and friends we are so blessed by and 
now He is so blessed to have. And what kid doesn't want to go to Disney 
World?!?!?! Like I said, we have to a lot to do and were going to make every
moment count with him."

They didn't know how long they would have with London, but he has kept fighting, and this friday, December 7th, sweet London will be born through c-section. 

Because of all the complications with Lyme, Alisa will have to be put under general anesthesia for the surgery, and because of this might not be awake in time to hold her sweet boy before he goes to be with Jesus. Please pray for her husband, Jaime as he holds their precious son and waits for Alisa to wake up. Please pray for peace and comfort that only God can give through this difficult time. Please pray that Alisa will get to hold her precious baby London before God calls him home. Please pray for Alisa's recovery from the surgery, as surgery is hard on anyone with Lyme,
but she needs to be strong to spend time with London, and then will have to continue to recover after he goes home to be with Jesus. Please just pray for peace for them. 

If you want to read more about their journey, you can read her note at this link

Thank you so much for always praying!

Monday, December 3, 2012

4 years

I had intended to have a bigger post ready for today, but I have been sick with bronchitis and a sinus and ear infection. I've never had an ear infection before, isn't that crazy?! I had all of this for about a week before I made it to the doctor, so it's taking a while to get over. I've been on antibiotics for about 3 days now, so I'm starting to feel better. However, I didn't realize the antibiotic they put me on (Zithromax) was also used to treat Lyme. It's making me a little sicker as it's killing off some of the Lyme. When the bacteria is killed, it causes a herx reaction. Here is a link if you want to know more about that

Thankfully, the herxing isn't too bad right now. It's just causing more pain and fatigue, but thankfully my pain medicine is helping some. The pain is just really bad once the pain medicine wears off and when it's almost time for another dose. But I'm getting through it with lots of rest and meds. Finals are next week and I'm way behind on things so I need to get over all of this!

So back to's a little bit about what I wanted to share today. I am working on a more detailed post like I usually do on diagnosis day every year, so hopefully I can get that done soon. 

4 years ago today I was diagnosed with late stage, neurological Lyme Disease, as well as at least 3 co-infections. I was finally diagnosed at a clinic in Reno, Nevada after being sick for 2 years and finding no answers here in Oklahoma. I've suffered brain problems, heart problems, and problems with literally every organ now. I have a port (permanent IV) in my chest that goes to my heart that allows me to receive IVs at home. I certainly didn't think that at age 19 I would have already spent 4 years traveling across the country to
my doctor, missed 3 years (and more) of school, be on continuous morphine just to get out of bed each day, and most of all, I never thought that I would consider all of this as a blessing. I've grown closer to God in these 6 years that I've been sick than I ever have.

But this year, I've grown even more closer to God during the hardest time of my life. Last fall, I was able to take 2 classes in college and live in the dorms after missing 3 full years of high school! But this past spring, I got too sick again to go back to the dorms and take the classes I had planned to (I did take one class on campus). When I realized I couldn't go back, I was mad. So very mad. How could this be happening again? I was supposed to only be getting better from here on, but now I have another setback. I was very upset.

But a few days after I realized I couldn't go back to school, my family and I were called over to my best friend, Rebecca's, house. Rebecca was diagnosed with cancer a month after I was diagnosed with Lyme. We had been through everything together those past 3 years that we were sick. We had "parties" while everyone else was in school. Yes, we had so much fun, even when hooked up to countless IVs and monitors in the hospital. We were the only ones who really understood what each other was going through. Most of all, we were able to talk to each other about our faith in God and His plan through all of this. Neither of us were ever mad at God. I learned so much from her, and I hope she learned from me as well.

So on February 2 when my family went over to her house, they told us that the cancer was everywhere and that she would be going to Heaven soon. They said they would do everything they could to keep her comfortable until God called her home. I was speechless. Here I was, so mad that I couldn't go to school, and then I realized that God needed me for something SO much more important than what I had planned. So from February 2nd, until God called Rebecca home on March 10th, I was able to sit with her almost every day. God didn't need me to go to school this spring. He needed me to be with my best friend every day as He got ready to take her home. I feel so blessed to have been able to be with her until her final breath, when she was safe in the arms of Jesus. I felt God's presence like never before on March 10th when Rebecca went to be with Jesus in Heaven. God was there in that hospital room with us. He was there to take Rebecca HOME and give us peace and comfort.

God needs us for more than we can see right now. We might not see it until we see Him face to face when He calls us home. I may not understand a lot of what has happened, what is happening, and what is going to happen, but I do know that it will ALL be made right one day. God is so faithful and will never leave us.

Rebecca and I's favorite verse is Psalm 73:26, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion FOREVER."

I can't thank you enough for your prayers, support, cards, and words of encouragement these 6 years that I've been sick, and especially these past several months. Please don't stop. Please keep praying and encouraging me and my family as we continue to fight. We still have huge battles in front of us with my health. We will never be able to thank you enough for all you've done for us. Won't it be a glorious day when we are all whole and just how God made us to be, together in Heaven one day?! But until then, we must stand strong together as the body of Christ does. You have been doing that, and I can't thank you enough!
"Till He returns or calls me home, here in the power of Christ I'll stand!"

I love you all so much!

Monday, November 12, 2012

Encouraging Songs - Week 6 - (Even If)

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 

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 


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 


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"

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!

Tuesday, November 6, 2012

I got to vote for the first time today!

Wednesday, October 24, 2012

I will post soon!

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.

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

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

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

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!

Thursday, September 13, 2012

National Invisible Illness Awareness Week 2012

This week is National Invisible Illness Awareness Week!
The theme this year is "Have an invisible illness? Share your visible hope"! I love this theme. Hope is one of most important things you need when you have a serious illness, especially an invisible illness. 

"We have this hope as an anchor for the soul, firm and secure" Hebrews 16:9

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

There are so many people who have invisible illnesses. What does having an invisible illness mean? It means that you get told...

"You look great!" even when you're feeling terrible. 
"I can tell you feel better because you look good!"
"I'm so glad you could be here. I'm glad you are finally getting some relief".
"You look better so I'm so glad you're well now!" 
While we appreciate that we look good, it's so hard to get people to understand how sick we are when we look normal. Of course I want to look great and love when people tell me I do, but sometimes I wish my illness was visible because maybe people would be more understanding. There are times when my illness is visible because I'm pale, have gray skin, am hooked up to IVs, look in pain, park in handicap parking, or have to use a wheelchair. But most of the time I look normal.
People don't understand how you can look normal but claim to be so sick. Many times you will lose friends because they think you are faking it. I have lost friends because of that. Doctors will send you away because you look "okay". I have a handicap parking permit because I can't walk very far, and I need to save my energy for actually doing whatever needs to be done, and not use my energy walking in from the parking lot. Just walking in the parking lot will wear me out. I can't even count the number of stares I get because I don't look like I need to park in handicap. People judge you a lot. 
When you finally get up the strength to leave the house because you feel like you've been hit by a truck, the last thing you want to hear is how good you look. We just want someone to validate how bad we feel and how hard we worked just to leave the house. When you look good all the time, people assume you are better and feeling okay. That's not how it works with invisible illnesses and it's so hard to get people to understand how hard it is. Just because I am out of the house or say that I feel better, doesn't mean that I am better. I might be feeling better that day, but I still have good days and bad days. Good days to me still involve chronic pain, fatigue, brain fog, nausea, and weakness to name a few symptoms. There isn't a day when I don't hurt somewhere despite the pain medicine. Most times you wouldn't know that from looking at me. 
That is what living with an invisible illness means. What is horrible is that there are so many people who suffer silently because people don't believe that they can be so sick and still look "normal".
This questioner came from the invisible illness website and I've posted it before, but I've updated my answers. 
30 Things You Might Not Know About My Invisible Illness
(I have a problem with just picking one answer for each question, so I give more than one!)
1. The illness I live with is: Late Stage Neurological Lyme Disease, Fibromyalgia, multiple co-infections (Babesiosis, Bartonella, Ehrlichiosis, and other infections)

2. I was diagnosed with it in the year: 2008. I was 15 years old and a sophomore in high school. I had been sick since I was in 8th grade. I was diagnosed in Reno, Nevada (remember I live in Oklahoma) where we found a clinic that specializes in hard to treat diseases such as Lyme, MS, Lupus, Arthritis, auto-immune diseases, and even cancer. So I have to travel across the country to see my doctor. 

3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: realizing that this is a chronic illness and being taken out of the fun teenage world and thrown into the adult medical world. 
5. Most people assume: that if I'm out of the house I feel good. And if I'm having a good day, that means I'm completely better and can do everything again. That's not how it works though.. One step forward, three steps back. When I'm having a "good" day it still means that I'm in pain, exhausted, nauseous from the pain, weak, and taking lots of medicine. 
6. The hardest part about mornings are: waiting for the strong sleep medicine to wear off and dealing with unrestful sleep through the night. Also feeling like you've been hit by a truck because you don't have any pain medicine in your system. 
7. My favorite medical TV show is: Too many. A couple are House and Saving Hope (but unfortunately it's being cancelled)
8. A gadget I couldn’t live without is: Computer and phone. If you're not feeling well, that's the only way to keep in contact with people! And, I get medicine reminders on my phone which helps a lot!
9. The hardest part about nights are: being so exhausted and still not being able to sleep from the pain.
10. Each day I take: actually right now not many medicines. We've been working on pain management currently. So I'm on lots of pain medicines, sleep medicine, nausea medicine, and other medicines. Most of medicines right now are "comfort" medicines if that makes sense. I still do IV fluids at home through my port sometimes and occasionally do shots. When I'm on treatment to kill the bacteria, I take over 20 pills a day (or more, I lost count a long time ago), several shots, IVs, and lots of liquid medicines.
11. Regarding alternative treatments I: completely believe in them. I am on alternative treatments because I can't handle regular treatments.
12. If I had to choose between an invisible illness or visible I would choose: Something besides Lyme that is so politically split, has no recognition, and that doctors will actually treat. 
13. Regarding working and career: I am now able to take three classes in college! After missing three years of high school, I was still able to graduate from the homebound program. I started college last year and just took a couple classes. I lived on campus first semester last year, but moved home second semester because I was having some set backs. I live on campus again, and am taking 8 hours which is the most I've ever taken! It's very difficult still, but I'm hanging in there. 
14. People would be surprised to know: I secretly laugh when people tell me how strong I am. So you're telling me I'm strong for fighting for my life? I'm just trying live, not be strong. It's something that has to be done and there's no way around it. I also laugh because I'm not strong. My God is strong and through Him I am strong. ONLY through Him. I do appreciate being told I'm strong, but it's not me, it's Him.
15. The hardest thing to accept about my new reality has been: the unknown and controversy about my disease. We have to make medical decisions because most doctors won't treat me. It's so hard to have a disease that the government says doesn't exist, therefore we have to stay under the radar with it. But that doesn't mean we don't spread awareness. It's so difficult to have your doctor across the country and not within driving distance. Also, that this disease is in the late stage and neurological. It's hard to accept that when I'm only 19 years old and got sick when I was in 8th grade.
16. Something I never thought I could do with my illness that I did was: help give others hope and give advice about treatments to people literally all over the world through my blog. 
17. The commercials about my illness: Don't exists where I live.
18. Something I really miss doing since I was diagnosed is: Singing, having energy, being able to remember things. My memory is so bad because of the disease being neurological. I don't remember most of the past several years since I got sick. 
19. It was really hard to have to give up: Everything. My independence. So much has been taken away.
20. A new hobby I have taken up since my diagnosis is: Blogging and trying to spread awareness for this disease. Through my blog, God has used me to listen to others and help them since I've been through it. 
21. If I could have one day of feeling normal again I would: Do normal teenage things with my friends, not worrying about being too tired or in too much pain. Also, not having to worry about if I'll be too out of it from pain and nausea medicine to do anything. 
22. My illness has taught me: to cherish the small things like being able to get out of bed and walk. That God really does have a plan for me, even if it is way different than what I had planned for me. He knows my past and most importantly my future, and eternal future, so He really does work all things out for good even when I can't see it. 
23. Want to know a secret? Even though I hate this disease I wouldn't change anything. I'm so much more aware of my blessings and helping others. I've grown so much more closer to God and can really see why He put me here when He did. 
24. I love it when people: visit me or send me encouraging messages to show that they support me.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: Do research for yourself and trust God. If you trust Him and His plan you can get through anything.
27. Something that has surprised me about living with an illness is: How many things we take for granted.
28. The nicest thing someone did for me when I wasn’t feeling well was: actually tell me how sick I look. Thank you for validating how horrible I feel!
29. I’m involved with Invisible Illness Week because: I don't want anyone to have to go through what I've gone through. But, I wish everyone could learn what I've learned without having to go through what I've gone through. 
30. The fact that you read this list makes me feel: very, very blessed. I hope you understand how many people are silently hurting. But, I hope you know that we will not let this disease overcome us!

So yes, I have an invisible illness. I've had symptoms for 7 years (and I'm only 19) and will most likely have symptoms for a while since it is chronic and neurological. That doesn't mean that I don't believe that God can or will heal me. He may choose to heal me on this earth, but even if He doesn't, I know that I will forever be healed one day in Heaven. 

I have an invisible illness, but I pray that my hope is not invisible. I have the greatest hope there is! God promises us so much through His son if we believe in Him. He is my hope and that's all I need! 

I pray that you don't just look at these verses under this as just another list of verses, because they aren't. This is where I get my visible hope. I've seen what God can do and I want other to see God when they look at me. I want them to see my life and see that I live differently, even when I'm sick, because I have hope and joy and peace through Christ! If you want to know more about this hope, I would LOVE to tell you!
"Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11

"With that same spirit of faith we also believe and therefore speak,  because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 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 4:13-18

"Therefore my heart is glad and my tongue rejoices; my body also will live in hope" Acts 2:26

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow withhope by the power of the Holy Spirit." Romans 15:13

"We have this hope as an anchor for the soul, firm and secure" Hebrews 16:9

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

Thank you for reading and for your support and prayers!!
Check out the invisible illness website to see how you can help.

Monday, September 3, 2012

My dorm room and school!

I had planned to move into the dorms the Saturday before classes started, but since I had just gotten out of the hospital, I moved in the day classes started. So that was a week ago today. Here are pictures of my dorm! I love it. It's so much nicer than the freshman dorms I lived in last year. This is the newest dorm on campus. I'll explain the pictures under them.

From the main door to our suite. My suite mates room is to the left of this picture and the bathroom is to the right. 

Our little living room! My room is off the living room to the right. 

Our little kitchen area! The door to the right is my suite mates room. 

The door straight ahead is the main door. Bathroom is to the left in the hall behind the kitchen area. 

From our bedroom door! This is my bed and desk. 

My desk

There is so much storage under the bed. It's perfect. 

Our room from the door. 

It's so nice to have a sink in our room. 

My closet is the one on the right with the tv on top. 
School started last Monday! Monday morning we had the inauguration of the new president at Oklahoma Christian. That took place of chapel which we have everyday. Chapel is every morning for 20 minutes where we stop what we're all doing and worship God together and have a short lesson by different speakers. The inauguration was an hour and a half on Monday, so my Psychology class was only about 20 minutes. I have one class on Mondays, Wednesdays, and Fridays. Then on Tuesdays and Thursdays I have two classes. So I'm taking 8 hours this semester which is the most I've taken since I got sick!

School has been going well. I'm taking it slow and still resting a lot. I'll update more this week about everything!