Wednesday, April 30, 2008
Tuesday, April 29, 2008
heard the whimpering of my dog just on the other side of my door...
Seriously Heather. Am I the only person to let you out?
Oh well grab my cane slowly walk towards the door...
Turn the handle. Open the door slowly-
On the other end Heather is thinking
hi! hi! Oh my goodness hi! I didn't think you would ever turn the knob!
I was sure you were still in there! Oh hello! Now I will turn in circles to be sure you see me!
I look down to see my very large dog running in small little circles.
Okay circus dog out to the front door... She begins to run...
wait.... wait... Look back...
okay. phew! she's still there!
Look at me run I really gotta pee!
Ah! At last! We've made it to the door we're both in relief.
I let her out she takes her running start and I hobble back to my room.
What a team eh?
Today just like pretty much any other day- will have one doctors appointment.
So today in my normalcy I realized this isn't really normal at all-
Not many teens get to say they are getting a medical degree by proxy.
So I decided with the word Lyme I would say 4 things.
Lucky. I am lucky to be diagnosed with something and know what's going on rather than laying in bed each day with no answers or receiving the wrong kind of treatment because no one really listened to all of the symptoms.
Young. I have youth on my side. I can use this as an advantage so I can still go to college still go out and still have a voice- I have a lot of life left to live- I am not going to stop living now.
Me. I am learning constantly about myself. I am learning what I really love to do and what I really hate. I am learning how to take life one day at a time and most of all slowly I am learning patience. That's the hardest for me to accept is accepting to know I don't know.
Everyone's support encourages me beyond measure. I never thought that this little mind mess of emotions all tangled up would become a. my vent to the world. or b. the biggest source of encouragement for me. I am so thankful for people like you who read my story and go on with life hopefully with a little more knowledge than they came in with.
So although I could have said 4 negative things there is 4 positive things. :) Have a great day!
My mother gets the spot-light today. She is very deserving of such a title and so much more- as mother's day approaches I continue to think what I could I possibly get a perfect mother?! Not sure but only time will tell what she gets... I have many idea's. Why is she so perfect in my eyes? She comes home after working 12 hours a day reminds me throughout the day to take my medicine she has a genuine heart for others and she encourages me through the worst of times and the best of times. She's there when I am seizing she's there when I am throwing up heck- she has even caught my puke. She does anything. There is nothing more genuine then the love a mother gives to her child. She is such a wonderful person inside and out. I can only continue to be thankful for her because she really deserves so much more than she gets. So with that she is my source of encouragement.
Now if you're a faithful reader of this blog- I would ask you to pray for my mother and her strength- Also if you would like... I get many cards of encouragement but it's people like her behind the scenes that make things the way they are. If you would like to send my mom a card-
Send it to:
Attn: Denise Wilcox
P.O. Box 74
Big Flats, NY 14814
Thanks for your continuous support.
Monday, April 28, 2008
This post is a little insight on some stuff and more medical than ever not about my story- but information I got of the Lyme Disease Association's website. Hopefully to give you and your family some more insight on Lyme itself.
Since this hasn't been really done anywhere on my blog- I felt I should answer one major question.
What is Lyme disease?
things we wish we had known about Lyme disease
Protect yourself. Check yourself, family members and pets for ticks daily. Remember that ticks are carried by deer, mice, birds and other small animals found right in your backyard. Nymphal ticks are the size of a poppy seed in early spring and are particularly hard to find. They are active above 35 degrees. You can be reinfected repeatedly each time you are bitten by a tick.
Remove the tick properly and take it to a Department of Health laboratory or testing facility to have it tested for the presence of the organism that causes Lyme disease. Since infection can spread rapidly throughout your system, you may want to consult your doctor about prophylactic antibiotic treatment.
Observe. A person infected with Lyme disease can exhibit symptoms within days of exposure, but symptoms may appear eeks, months or even years after the bite.
Treatable. Lyme disease in its initial stage is often easily treatable; however, delayed diagnosis or inadequate treatment an lead to serious brain, heart or joint problems.
Examine/evaluate. Early symptoms can include headache, stiff neck, numbness, tingling, fatigue, swollen glands and igratory pains that may come and go. Late stage symptoms are generally multi-systemic and can be very serious.
Co-infection. A single tick bite can transmit more than 1 tick-borne illness, such as babesiosis, anaplasmosis or tulermia. o-infections can complicate Lyme diagnosis and treatment.
Testing. Since the diagnostic tests for Lyme are often inaccurate and therefore unreliable, a clinical diagnosis for Lyme disease should be made by a physician based on medical history and symptoms. The Centers for Disease Control and prevention supports this in their literature pertaining to Lyme disease.
Youngsters. Children ages 5-12 are at the highest risk for being bitten by ticks because they often play in tick habitats. Children often find it difficult to explain the subtleties of how they are feeling, and may often appear well and remain physically active.
Obvious. A person may have Lyme disease without presenting the most obvious and "classic" symptoms such as bull’s eye rash, flu, joint pain or swelling. Many people never see a tick or develop a rash.
Understand.There are over 100 strains of Lyme disease in the United States; therefore, length and choice of antibiotic treatment vary greatly. Standard treatment of 2-3 weeks may be insufficient.
Recurring. Many people who suffer from Lyme disease experience symptoms that come and go over time. Continued symptoms or the development of new ones after treatment may be a sign of persistent infection or a new infection. The medical community is divided over the existence of "chronic" or persistent Lyme disease.
Symptoms. The symptoms of Lyme disease, (also known as the Great Imitator) may mimic those of multiple sclerosis, lupus, chronic fatigue, fibromyalgia, mononucleosis, Alzheimers, Guillian-Barre Syndrome, ALS, rheumatoid arthritis, Parkinson ’s disease, ADD, or ADHD, GERD, or many other diseases.
Educate. The more you know and understand about Lyme disease and other tick-borne illness, the greater your chances are of avoiding infection and detecting illness if it occurs.
Lyme disease can affect behavioral and cognitive functioning. Memory loss, attention deficit and processing problems, mental confusion, slurred speech, disorientation, irritability, depression, anxiety and learning problems have all been reported as a result of Lyme disease.
Fact. A person living in a Lyme endemic area should consider Lyme testing if suffering from a chronic condition that does not improve with treatment. Examples include recurrent gastrointestinal problems, a chronically sore throat, or chronic ear infections.
TRUST YOUR INSTINCTS and PROTECT YOURSELF
Time For Lyme, Inc. affiliate of Lyme Disease Association, Inc.
Hopefully the information above has educated someone a little more about this disease, treatment and how to handle things a little bit better. I wanted to apologize for last week and no Medical Monday! I was actually at a doctors appointment out of town so I was not able to get to a computer. These last two weeks have been quite insane looking back upon them and I continue to be blessed with a wonderful support system of friends and family and total strangers. I started aqua therapy in Physical Therapy while they aren't accessing my port I am able to get in the water a lot so that's enjoyable and working many muscles all at once. Which is a major plus.
My walking continues to get better on a daily basis although some symptoms have been rearing their ugly heads more than ever. So I can't seem to win it all! Although I am confident that there will be a light I just don't know when and I keep it close in my mind that it may not be here for awhile- it's on God's time table- not mine. Today while feeling pretty crappy I listened to a song that really made me think- listen to the beauty of her voice and the lyrics she sings... (http://www.youtube.com/watch?v=vIMOdVXAPJ0) Interpretations are welcome. Comment as you wish. It hit me quite hard and it made me think- as I hope it does you too... She has a wonderful voice and each person with their own talent blesses me just knowing they're healthy!
The walk is coming along with great success and posters are up everywhere, in the hospitals and in local business windows. We have confirmed a T-Shirt company and continue to have things fall into place.
Here's to a good week!
I heard that some were a little bummed that I didn't update much last week due to my intense schedule so this upcoming week I promise to those of you who are avid blog readers- a post a day!
Jake- Now this boy is one impressive kid- after all he has the choice as all do to walk out at any time but he chooses to stand by my side and supports me through kind words and all the encouragement he can muster. He shows me each day what it's like to be a healthy teen without even knowing it and in return I show him a little glimpse of my life as a teen overcoming Lyme. He never ceases to amaze me with what he does or how he does it with simple actions or a little note left for me to read later... He has really made me so thankful for my life and he deserves a little credit as everyone does! :)
There are a few well deserving people that will go in the spot-light today (along with a request for prayer for them, I know they are complete strangers but- every prayer counts!)
The Hart Family-
This family has a love of God and each other they are amazing beyond words could ever tell and they are faithful with their prayer and love for others. Mrs. Hart has a dedication to the services for others and love for teens. They came to visit me in the hospital and have continued to pray and help encourage me every step of the way. I am very blessed to have them in my life and most of all I am very glad they have been there thus far. I ask you to pray for their family as Mr. Harts brother goes through a difficult time with prostate cancer levels.
I think he's going for an all time record of being my spot-light person. From my bedside at Arnot to my side at Victory praying with me and offering words of comfort... He really has opened my eyes to realize that if God has a vision anything can happen and the most inadequate words in my eyes become adequate for so many. It's amazing to see the work he has done for us as a student ministry and if I haven't mentioned it yet- we're all sad to see him go as he continues on his way to plant a new church in North Carolina. I ask for a few prayers for him and his family as he goes through this transition-
- That a name is formed for the church- there is still no name for the church and they cannot do tax things, etc. without a name for it.
- That Pastor Chris is at ease as he shares his story of life this upcoming Sunday and those who hear it have an uplifted heart about what he shares.
- That as a family they find connection and love through one another as they grow to know God and are able to continue to rely in his faith.
Last but not least and certainly the most important-
The Students that came to my testimony last night-
I hope they all have went to school today taking with them a new perspective on life with a new love for others and they continue to seek God and find what they need through the troubles that they face.
- Pray for each student and that they will be blessed and find love where they need it most.
Thanks for supporting me this far! (go ahead pat yourself on the back :))
I am very thankful for all those who have supported me and continue to support me. What a great thing it is to have in my favor.
Hope this is the beginning to another wonderful week-
Saturday, April 26, 2008
Once you get out though things kind of change and time moves quickly and you can't seem to get enough done in that day. Yes that is how it has been lately- maybe not busy with things like homework but busy with things like doctors appointments and did you know that just feeling sick actually takes up time? I have noticed my productivity level lessens when I feel worse. So therefore sitting trying to read the AP study book I have becomes a lost task at times as I become confused and stay on the same page for hours at a time not realizing I am positive I've read it before but am surprised each time at it's content.
When Dory the fish portrayed short term memory loss in Finding Nemo- She did a fine job at it because there are some days I feel just like that!
Seems almost instantaneously I have no idea what is going on and I am lost in a sea of people and confused with my train of thought of what I was thinking- or was I thinking? I can laugh it off most of the time but it becomes rather frustrating when you're writing out an e-mail and you had something to say but then when you open the document to respond it's almost as if you forgot even why the person needed a response!
Days have been rather painful as of late- my muscles ache and my joints throb... Hopefully soon I have faith that there will be a new leaf turned.
People ask me how I am feeling or what they can do for me-
Honestly- I feel horrible. Each day coming with it's own challenge.
What can you do? The only thing I can ask is to pray for this is truly out of my hands at this point.
On the lighter note mentally the week went by very smoothly things were very nice and I was extremely grateful for those around me. It's encouraging to know people care- and I continue to believe something is happening here.
Anyone who hasn't read this yet... I am giving my testimony tomorrow at Victory Highway Church in Painted Post, NY for Senior High students and I encourage you to come out for a good night of praise and the story of what exactly is going on! :) Hope to see you there.
Have a good weekend,
Today the spot-light person is my father. No matter how many times I get confused or I ask one to many questions, forget my medication or bother him with something he doesn't want to spend time with... No matter how often I frustrate him or how deeply I annoy him he still has his own way of encouraging me. He has shown me many different things in life and is basically the old fashioned way of looking up a song by lyrics! You can start humming a tune and he will tell you the artist and can usually sing at least the chorus. He is quite unique and I am thankful he's in my life to remind me of all of the little things I commonly forget. Not on purpose but just because I don't remember!
Sunday, April 20, 2008
Lord You seem so far away. A million miles or more it feels today.
And though I haven't lost my faith, I must confess right now that it's hard for me to pray.
But I don't know what to say and I don't know where to start.
But as you give the grace with all that's in my heart.
I will sing.
I will praise even in my darkest time through the sorrow and the pain.
I will sing.
I will praise.
Lift my hands to honor You because Your word is true.
I will sing.
Lord is hard for me to see all the thought and plan You have for me.
But I will put my trust in You.
Lord will meet Your guide to set me free.
But I don't know what to say and I don't know where to start.
But as you give the grace with all that's in my heart.
I will sing.
I will praise even in my darkest time through the sorrow and the pain."
I will sing.
I will praise.
Lift my hands to honor You because Your word is true.
I will sing. (2 times)
Psalm 13:1-2, 5-6
How long, O LORD ? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?
But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing to the LORD,
for he has been good to me.
I have noticed answered prayer over these last few days although there is still so much going on I continue to have faith! What a wonderful Sunday and the wonderful weather surely has brightened the spirits!
Have a wonderful day,
Thursday, April 17, 2008
Stepping out of the door
feeling the heat against my skin
chirping and wings flapping as birds fly above
the vibrant color of the flowers that everyone loves!
We take these days of warmth for granted-
Until the days of summer pass and we're in for the winter feeling a little down cast
Bzzzz to my right and the sound of children laughing...
A kick ball game is just down the corner and bee's and gnats are in the air.
Nothing taught the little seeds to grow.
Nothing taught the children to laugh.
It's a response to a stimulus and today miracles filled the air!
It's funny how many of my friends complain about going to school, homework, friendship drama, long distance walking, and all of these other little things. That to me are HUGE- I never dreamt there would be a day I would strive to be back in the hallways of school and that I would love to have the understanding of information to actually sit down and understand a large piece of literature. It's interesting how life unfolds- how things you never would've thought could happen DO happen and how much you really learn through your day to day contact compared to your text books. I am amazed at how life is and how things unfold each day is just another thing unexpected or completely expected it- is always not exactly how I thought it would be.
After my Question and Answer post was posted- I received 2 more questions...
Q: Are you still walking with a cane/ walker?
A: Yes, I walk with a cane still. My walker has been ditched for now but I rely heavily on the cane. Sometimes the walker comes in handy especially late at night. My muscle tone right now is very poor and through this we have learned the importance of Physical Therapy. After taking a month off from Physical Therapy and recovering from the two surgeries I have started it up again and we're hoping slowly- I will be able to get back on my feet even more in the days to come.
Q: What do you plan on doing as a career?
A: I have always wanted to go into the medical field since I was a small child but the dream has become a little more realistic with the hands on experience that I have gotten through this disease. My first hope was to become a Psychology major but more recently I have been looking into Pre- Med programs. I am hoping to potentially become a doctor but in what field I am not entirely sure. There are many options and I would like to explore them all a little more before thinking about exactly what I would like to do!
Hope these Q&A periods help those who are a little confused about what's going on or curious to be aside from the disease! If you have any more questions feel free to e-mail me or leave it in a comment.
She is the leader of a teen chat for people with Chronic Illness mainly geared towards teenagers with Lyme. She has suffered greatly from the disease but has pulled through none the less she is a wonderful teenager and has kept in touch with me greatly throughout this whole ordeal. She has inspired me with her way she has approached this disease and taught me that nothing is impossible and a little determination can go a long way. She is just as unique as her name and she continues to support those who suffer as she gets better and stronger each day. She's still on IV antibiotics but she's doing increasingly better as time passes. So with this I would say she is definitely inspirational in her ways and a teen activist.
Keep registering for the walk and please mail in your pre-registration's by May 16th to our P.O. Box at-
P.O. Box 74
Big Flats, NY
Thanks for all of your support and enjoy the spring weather!
Wednesday, April 16, 2008
Q: What is a Port vs. a Picc line vs. Peripheral IV?
A: A port is a surgically placed device that can be used up to years. It is good for patients that have resistance against IV's or bad veins for IV's and are on continuous of frequent IV therapy. A picc line is an IV that is placed in a large vein in your upper arm and is strung through that vein to just above your heart. Although Picc line usage is only at the maximum used for 4-5 months. Peripheral IV's are placed in small veins and can only be used at maximum 5-6 days. They require a little more care and are placed in smaller veins such as your hands and arms. They work well for short term IV use and are perfect during hospital stays. All three IV types are good in what they can be used for. Although for a more continuous IV use the Port and picc are better devices are good for continuous IV treatment and various different situations will depend on which is used. In my case, the port was placed due to the fact my body was rejecting the picc lines.
Q: Why are you using a cane/ walker?
A: Right now my balance and strength in my legs isn't the best so it's easier to get around with a little assistance of a cane or walker depending on my strength rather than falling. Although even with the walker I have managed to fall... So it's not completely fool proof. Also, sometimes I can go quite quick with either and it appears I do not need any assistance but they're good to keep around because I can lose my strength quickly and end up relying on them more.
Q: What does Lyme do to you?
A: Lyme is a spirochete infection that can attack any muscle tissue, cell, or organ it chooses usually going for the weaker and then weakening others. So it basically attacks your body and it can also mimic the DNA of other cells to appear to be a healthy cells to help the duplication process.
Q: Have you thought of doing alternative treatment along with antibiotics?
A: That's exactly what we're doing! Through our chiropractor we're getting the herbs to keep my body somewhat healthy as well as trying to fight off the infection through herbs and using antibiotic therapy. Although, I am currently treading water as I am not on any antibiotic therapy at the moment due to the fact I have developed many allergies to different medications and I the doctors have to essentially come up with a plan- between my PCP and LLMD.
Q: What exactly is going on with your lung?
A: Since the gall-bladder surgery I have had severe pain on the edge of my lung with hard breathing, laughing, etc. It has also caused difficulty with my lung capacity measurements. Which is the little breathe in and have the blue disc go up thing... Forgive me for I do not know the correct term for this thing. I suck in on that around 60-70 times a day now trying to exercise my lungs. Although the capacity stinks and isn't great and I have been around 500 ml mainly. It does get higher sometimes. I continue to do that and work hard at it soon I hope to see a higher result. Since my dad who smokes constantly is beating me!
Q: What keeps you going?
God is huge driving force in me just because of what he does through me that I can see and we think without him I wouldn't be here today. I also would satisfy too many people by giving up at this point in the game and as one quote says- "When you feel like giving up; remember why you held on for so long". I refuse to live by possibilities because many said it was impossible that I was having those seizures but come to find out I was and quite frankly I probably wouldn't be here today if we went by the possibilities of the situation. My family and friends are also close reminders that life really is worth it to keep going when it comes to the youngest of my cousins just calling to say hello to my grandpa calling to have a deep talk with me or my mother or father reminding me to take medications, or a friend dropping off a get well soon card... They all have their place in my life and continue to keep me going. I keep going because I honestly believe that I will get better if I continue to fight against what is going on in my body. There is no sense in not giving it my 100%.
Q: When are you speaking at Church?
A: I am speaking this Sunday April 20, 2008 at 10:30 AM for Overdrive- The Junior High Youth group at church and then again Sunday April 27th at 5:57 in the PM at the Mix which is a Senior High based Youth Group. Both of these are at Victory Highway in Painted Post, NY (http://www.victorystudents.com/) Both of these events will have a different presentation and I will be presenting my testimony to the youth of our church and other youth in our community!
Q: When is the Walk?
A: Pre- Registration has begun! Please visit our website at www.lymewalk.org and go to the registration page for more information about registering or go to the Lyme Walk 2008 Info page for more information about the walk itself. We're reluctant to finally get the registration packets out and excited to have many interested in the cause.
There is one extraordinary man that hasn't been spot-lighted yet and most definitely deserves it more than anyone today. My grandfather and I were never really close until a few months ago and I am so thankful that we are now. He has been through a lot in his day from encephalitis that was potentially contracted on a missions trip to double knee replacement. He's my driving force. He continues to inspire me through his words and wisdom and astonishes me with his wit. He's a wonderful man and he lives his life for God which makes me amazed. I love how much faith he has and how he instills it upon me without even really saying much at all. My grandpa can even TEXT! It was funny I sent him a goofy picture of me and he sent me a text back that said good. Let me tell you that had me amazed! He's a wonderful person all around and he's inspired me to do missions work. One of my dreams since I was a small child was to go on a missions trip with my grandfather to Haiti. Ever since I saw him come back one time and how happy he was I knew this was something I wanted to do. It wasn't so much the stories he told but how he radiated from doing good for others. I think this is where I really saw that I wanted to help others. Seeing his love and compassion for other people. This year he will be making that trip and I never once thought I would have to tell him I wouldn't be able to make the trip because I was too sick. I always worried that it would be the other way around. Although he promises me if I am healthy enough to go in the future- he will be at my side to go along with me. My grandfather has instilled something in me that no one else could have ever done for me and has really helped me understand more about who I am and why I am here. He's a wonderful man and I am thankful to have him in my life.
As Bugs Bunny would say!
That's all folks!
Have a wonderful night!
Monday, April 14, 2008
I have stayed out of the hospital all week PTL!!!!!
Although I haven't been feeling great all week many things have happened and I have been getting out a lot more than I have in the past. Although upon this I pay the price through pain and other things.
The week started out with a bang- Speaking to a Senior High English Class about Lyme and my story of Lyme disease. Along with the prevention of the disease and basic knowledge about the medical world I live in these days.
Tuesday I got re-aligned at the chiropractor after 2 surgeries I sounded like Rice Krispies!! I also got my hair washed and got to meet a wonderful lady who really impacted me with her words and I got to talk with just I don't even know how to describe it other than- it was- "A God moment" As we have been beginning to describe them.
Wednesday was another very eventful day with speaking I spoke for Fortuna Energy assisting Lis with a presentation and sharing my own personal story. Which was quite the experience speaking to 70 adults about my personal story and having the room be absolutely silent. I was a little nervous not going to lie.
Thursday I took some letters for the walk to the dentist office on behalf of my mother and we got another potential sponsor. Which was totally awesome.
Friday- I had an appointment that was forever and a year long but all turned out well. Most of the time was spent waiting.
For the teen generation-
A father was texting his son
and the lady with him took his phone and texted the son saying hey baby
The text in response was- WTF Dad?!
Needless to say the woman said it said whatever dad
He said what?
She said- I don't know it says w-t-f dad?!
And I burst out laughing... Soon they caught on
Friday night we also had a Lyme Walk meeting that was a tad stressful but a success overall. The walk is coming together greatly and I encourage you all to visit the walk website: www.lymewalk.org. Pre- Registration began the 11th.
Saturday I had my friend Ashley over then two gentleman joined us for a great evening of laughter and talking. It was quite the low key night but if you were on the other side of the wall you might have wondered what was so funny! Ashley my friend and I were quite full of laughter!!
Sunday was also wonderful- I got to go to church and I also made it to my friend Marissa's 18th birthday party which was awesome! I was so happy to be able to do two teenage nights in a row. It felt so nice to just be as close to the old me as possible. I wasn't judged for who I was or for having a cane we all just had a good time. It was really nice.
Today I had another appointment with my PCP and I had a decent appointment- we're starting to look into alternative treatment plans for me. I have been dealing with lots of allergies to medications and such and this is just a stepping stone. Today I definitely felt the last two days and I wasn't feeling as good as I usually do but it was overall a good day...
My inspirational person for today-
Marissa and I met through the article Sarah and I had written in the Star-Gazette. She was very kind to me and has been a very good friend. I can't say enough good about her. She has impressed me with her skill of writing and her acceptance of others. She's a great friend and I was truly honored to be invited to her birthday party- she is a very great person! I am very blessed to have her in my life as I am all of the people that I have come in contact with thus far in my life! :D
Hoping this week continues to bring good days ahead!
Spring break for all of my friends! :)
Hope Spring is shining through all of your windows these upcoming days-
Wednesday, April 9, 2008
I wait for her word to see if she's okay with no response I can only fear the worst.
This morning I wake up a little less rested than usual
Tuesday, April 8, 2008
Hey! Slow down don't take her away! I am laying here on the floor!
Don't forget me!
Nurses shouting orders doctors walking at a fast pace.
Monday, April 7, 2008
click the photo to see it larger!
Starting tomorrow I am kicking off this upcoming week. As of the next 7 days I will be doing a different twist and starting the "perspective project". Check back tomorrow as I go through with creative writing and adding a personal twist to the blog!
The spot-light people have been getting letters in the mail this week!
Sunday, April 6, 2008
I live each day the same I go through the same movements and in a crowd of people I would not stand out for who I am. Perhaps the walker would give away I was sick or maybe a tired face but I am not all that different. I still laugh, cry, and love just like everyone else. I am not very social with certain people and I can be really goofy. I have a lot about me that's just completely normal. I love art, photography, painting, pretty much any art. I enjoy movies but I don't sit still long enough to watch one. I have a weakness for children's movies and can always go for a thought provoking book. I don't like things to be quiet and when they are I think there is something wrong. I hate it when I see people giving me wierd looks because my walker isn't that scary... I don't know. I am just normal. That's all.
Dare to be different is what they always say but differences seperate you... So why would anyone dare to be different if they get condemned for doing so.
This is just random. Not ordinary. And kind of just here. Take it or leave it.
Saturday, April 5, 2008
Ashley and I kind of met through a Lyme support group online. Through that time she has shared her story and her courage and shown me things I didn't ever notice. Her grace about life and her faith that is subtle but very powerful is amazing to me. I find it so hard to read stories of people's struggles because I know that they suffer from the same disease I do- so I limit reading stories that I don't know the end result and know they got better. Just the other day I read her story and it touched me deeply because although I have been hit hard with this disease my mis-diagnosis was far different than others with mis-diagnosis. So I read her story with tears filling my eyes knowing where she is today and only imagining how she felt then.
I share this excerpt from her blog because it's powerful. It says a lot and it conveys a message about something I think many of us "lymies" face. A daily thing for some perhaps a less frequenting message for others. But never the less what we face on a daily basis can be a struggle and it's not always easy. We don't understand what is going on and for many of us we are placing our faith into hands of doctors who although they are experts really are only human too- they only know so much and truth be told: they don't really understand it either. This was written before Ashley was diagnosed with Lyme but some of the things she touches really portray some real feelings that I have personally felt and I think today is the perfect day for this to be posted.
Without further a due-
I don't feel real anymore.
I feel like a zombie.
I feel like my life was drained out of me, but then my body was left to see how well I could continue so-called living.
I feel like I'm 123 years old; not 23.
I feel, nearly every day, like I've been hit by a ton of bricks.
These are only SOME of the ways I can describe the way I constantly feel...
I've always believed in God. Sure, I've had my doubts, but nothing has made me doubt more than this happening to me. I've never prayed so hard in my life to feel something more, something BETTER than what I feel nearly every day due to whatever it is this is that has taken over my entire being.
I've prayed so much and, yet, I really haven't gotten an answer.
Sure, this doctor I'm going to now seriously seems to think it's the vitamin deficiency, but I really have a hard time seeing how that would make me feel so deathly ill. And the scary thing is that NO ONE knows what is wrong with me... not even doctors who should be competent in what they are doing.
They are paid entirely too much to sit there and tell me stupid things, like "it's your spirit" or that it's a vitamin deficiency. And yet, doctors get away with telling patients this crap all of the time.
Don't get me wrong, I understand that a person can have problems with their "spirit", but it wouldn't cause them as many problems as I'm having.
It just doesn't make sense.
I have no idea what I'm going to do if I get tested for Lyme and that's not it. I'm basically standing at the edge of a cliff, wearing a blindfold, waiting to see if I'll be allowed to step away or if I'll be pushed over.I don't feel like I'm controlling my life anymore.
And it's MY life.
And what's scarier is I have no idea who or what is controlling it.
It almost feels as if a monkey was given the remote to me AND my life, and is just sitting there pushing whatever buttons it wants and sometimes pushing all of them at the same time.
I thought that after half a year of this, I'd be all cried out, but I'm not. And it amazes me that I'm not. I've never felt this ill, nor have I ever cried so much in my life.I just wish I could go back a half a year, so I'm feeling "normal" again.
Plus, I have no idea if I'll ever get better and I'm starting to really doubt I will.
If doctors don't know what's wrong with me, and they've had half a year to find out and haven't, then why should I continue to be hopeful?
This week has been one of my worst weeks since becoming so mysteriously ill. And I've been on the vitamins the doctor wanted me on. Are they supposed to make you feel like shit before they actually help? I know some medicine is known to do that, but these are vitamins; not medicine.
God, how much longer must I suffer because I'm really afraid I can't take much more.I don't see how I deserve this, but more importantly, I don't see how Matthew deserves this. He's such a good man and husband. And I can't even be a decent wife anymore.
I don't have the energy to do anything.
Even if I have the energy to put the clothes in the wash, I don't have the energy to put them in the dryer or fold them after they are done drying, which is ridiculous because that really doesn't take much energy, but obviously, it takes more energy than I have. I haven't cooked since before I got sick.
I'm really having a hard time understanding what God's plan in this is?
It's always said that God doesn't give a person more than they can handle.
But it's getting to the point where I can't handle this anymore. In ways, I believe it's already past what I can handle.
It wouldn't be so bad if I knew what it was that was making me so sick, but I don't, and that's what's making it even more unbearable. And I really have no idea how much longer I can bear it.
All I know is the wick is becoming increasingly short.
A little peak into another mind- a different perspective
Tomorrow is church! Off to bed. Hope this has brought you some thought as it did me- Although this has been edited the complete entry is on Ashley's blog.
Friday, April 4, 2008
Hm. Now there are so many angles I could take this blog from today that I am not quite too sure where to take things. I will start with updates from Tuesday to today... Friday. In one day of my life it seems to be that I live what most people would live in ten! I feel so much like my life is literally like a novel with the pages ripped out... I don't really know what to expect anymore and I really don't know where I am headed. Things have been insane these last 3 days of my life and looking back on them I am in disbelief, astonishment, and amazement at what all has taken place. I can only continue to be encouraged by each road block that is placed before me because through this I really am feeling like I am becoming something a text book never would've showed me a parents guiding hand never could have taught and a classroom would've found boundaries through. I can only hope that "normal" is coming soon. But let this not be for the glory of me but for the glory of a greater spirit and I can only place my confidence in him for I am as my surgeon prayed with me just moments before going into surgery to get my port put in- we are only vessels and we are all just minorities compared to his greater plan. Without further a due- the past three days of horror, fear, encouragement, faith, and prayer.
Started off normal enough with getting around and heading out to the hospital for my infusion. I actually was feeling really good. I was talking up a storm with another lady in the infusion clinic and was pretty strong. Although still using the cane for balance and coordination. By the time I made it home I was dragging my feet to get to the door and slowly feeling worse and worse. I wasn't sure if I was going to be sick to my stomach or what was wrong but felt as though I was losing my ground quickly. So I felt I should go to the bathroom. I made it there and sat down feeling drained of energy and very weak. I called my mom and pleaded for her to come home. I was feeling horrible. Upon taking my temperature my temp was too low for the thermometer to read but I was feeling feverish. I laid down and within a few hours my mom came home. She laid down with me in bed and we slept. I was experiencing pain down between my hips and I wasn't sure what it was but it was very uncomfortable and I couldn't pin point it. Upon waking up I got my mom to get out of bed and made it to the bathroom. Upon going there- I took a turn for the worst. I was starting to get extremely dizzy and yelled to my mom to come to me everything was going grey and there was static in my ears and I couldn't hear well. Within moments from that I passed out. My mom said I turned yellow and my color wasn't good. She called 911 and the EMT's arrived in seconds applying oxygen. I was unresponsive and very hazed over. I felt horrific and remember only bits and pieces of that night.
The Prayer Chain Request for that night:
The following request is from Debbie Connett for Victoria Wilcox: **"Please pray for Victoria She has not felt good in the last 24 hours. As I write this they have called 911 and she is on her way to Arnot Hospital. She is trying to have a seizure but the anti seizure medicine is preventing it, this is a good thing I think. Pray for wisdom for her Doctor's that they will be able to come up with the right plan of treatment. Debbie"
The Big Port Day I was able to get my port placed! (If you click the link on "The Big Port Day" you will be able to see the exact port of which is placed in my chest. Well not really but a photo of one like it and actually that port is about the same exact size as the one I can feel in my chest! It's kind of crazy having this port because I can see the bump. I got two incisions to get the port placed one about a inch and a half and another small one. You can feel the catheter and port very distinctly below my skins surface which is very interesting and a bit un nerving. Especially for those who are weak stomached. The surgery ended up being done late but it was successful and done under local anesthesia. So I was able to wake up quickly and out of the recovery room in a record half hour compared to the gall bladder surgery last week! Although we did discover another allergy- to a pre-cautionary antibiotic they used in order to decrease the risk of infection during surgery. Although it ended up being a hindrance to me rather than helpful and I was an itchy mess. Before the surgery the surgeon took the time to pray a very heartfelt prayer with me and my parents and it was very impressive. I was thankful for his prayer because just upon going into the OR I was scared and began to cry after holding it together all morning. It was all of a sudden too much and he calmed every last nerve. It's amazing how prayer can do that sometimes. That night passed quickly as I slept quite a bit and was very tired due to the fact I stayed up the entire night Wednesday night because I was in a large amount of pain.
Thursday was an awesome day- although I noticed my legs were considerably weaker I walked the halls... Began eating and the pain had dwindled for the most part. And big news I had gotten my breathing doing a lot better! (For those of you who didn't understand the problems that were going on with my lungs- we do believe it was because of the gasses used to blow my stomach up for the gall bladder surgery on Wednesday of last week.) Overall Thursday brought a very positive light and that night I was visited by the little girl Shannon who I shared a room with a few hospital stays ago when she got her tonsils out. She was there with her brother who also had his tonsils removed! Her courage and little joyful spirit brought me a new found hope and I was encouraged by her vibrant smile.
Today I got to go home! Of course this was the happiest day out of all of them because I feel much more at peace in my own home in my own area. It is nice to be back where I have a little more control of things and I don't have to rely so much on nurses and things. I also have a little more encouragement since I am able to receive and send out e-mails and text and IM. The computer has become my contact so I am not in complete isolation. Although I do have to say everything is about perspective. What a week it has been!
I am very encouraged and finding new strength each step of the way and although I do not know what is in store for me next I am continuing to be faithful. "We love him because he first loved us." 1 John 4:9-10
The Spot- light:
There are two very special families in my life right now that I believe have both been spot-lighted or had members of their families spot-lighted but have not been given the 100% attention they deserve.
The Lynch family is the first family- as a family they have been extremely supportive and kind and compassionate to our family. Their ongoing love to me and my family is very amazing and each time I call their house whether I speak to one of Sarah's sisters or one of their parents you can sense their compassion and concern in their voice as they talk to me. It's very uplifting for me to have the support that they have given to me. They also have taken over a lot of work with the Lyme walk that I had been kind of doing myself but as of late have had to give up due to dealing with my own health complications. They as a whole are just remarkable and I am very touched to have them there to cheer me on as I continue to get better.
The Vernon Family is the next family I would like to spot-light. I have had their son Caleb in Sunday school and Chris is our youth pastor currently at our church. Although Pastor Chris is taking a leap in faith this year to start a church in NC. Which if you knew Pastor Chris it would seem uncharacteristic of him. He has taught me a lot and deeply touched my life through his faith. Their whole family brings me courage and it's always wonderful to see them running down the hall of the church to wrap their arms around their parents and to see the bright glimmer in his children's eyes. They are very inspirational and I ask of you to join me to pray for their family as they are taking a step into the unknown and they are going completely by faith alone to start this church. Beginning in the living room of their apartment and hopefully growing to a congregation. They most definitely will have a testimony to share and have shown me so many things.