Monday, March 31, 2008
Tuesday night we found out that I was going in to surgery the next day (Wednesday). I have been recovering since then and it really knocked me off my feet.
Things around the house have been hectic and I am scheduled to get my port placed this Wednesday. We are hopeful that things will be on the upswing from here on out. I have noticed improvements in my health- little things here and there. Although I took a complete crash in the night last night and developed a fever today.
So we're praying the fever and flu-like symptoms are just a passing thing and my lungs that have been considerably weaker will be strengthened before I go through the more minor surgery on Wednesday. It is quite the ordeal but I am confident in the doctors that are treating me.
I am sure there are many things I have missed because I am quite tired but- the surgery was a major this week and we continue to hope that things are better soon...
Chuck is my spot-light person of the day... He is an IV therapist at Arnot and he has been very helpful along my journey. Today he put in my IV and was very quick which was impressive considering the fact that many nurses complain about how bad of a stick I am. He has treated me very nice and has been patient and shown his love for people through his work. He is as many say the "king" of IV therapy and although he's the best in the hospital he does not hold an ego and listens carefully to the people he works with. I couldn't ask for a better IV therapist and I am thankful that he shows his compassion... It's rare to find a person who works with his heart at the hospital and who takes time out of his day to understand the case.
Healthy days ahead!
Sunday, March 30, 2008
Health, and cheer. After staying at strong health in a baby is something I am amazed with so precious and so miraculous it's amazing that a single cell can become a working, thinking, functioning human. One thing that no one ever skips is being born. It amazes me when watching a little baby and them discovering each thing new to them in their life. New sounds, texture, colors, noises, and shapes they slowly develop their personality around what they have seen and experienced.
The love and bond between a mother and father and their child no matter what the age... It is something that impresses me beyond any measure.
The sprout of a new plant and the sign of a new beginning the thought that no one needs to tell the seed what to do it just grows and reaches towards the sun... Or like baby sea turtles that hatch away from their egg to crawl across a sandy beach to reach the ocean... So little and so insignificant yet such an amazing thing to see or experience.
Laughter- The ability to laugh and laugh with others is one of the greatest gifts you could ever receive or give. It is a healing mechanism that works far more efficiently than anything you could ever find in a medical book and lightens the heart.
And the last one for tonight- Rather controversial is a tick.
To me this is a miracle in itself and also brings great reality to life and purpose. If you take a look at a tick you can really only see it as shown above if you have a high quality microscope and are in a controlled environment. You will find that beneath this tick it is small as a pin prick but has the power within it to turn families upside down, change lives, and destroy communities. This little tiny insect if you will- has so much power brought within it... We are almost foolish to say we are inadequate in any way shape or form because we have so much more power and ability yet we let others restrain us and hold us back from dreams, hope, and faith. It's amazing something so simplistic and tiny can do so much be we has humans seem to do nothing.
Tonight's spot-light person is another group-
Tonight I spot-light the care-givers of the unhealthy and pray that strength is given to each of them in their darkest moments as they really are the behind the scenes that make the people who are fighting strong and seem powerful.
Enjoy your Sunday!
Friday, March 28, 2008
I am very fortunate that my father is home with me because although he and I can get a little upset with each other he stands up for me and he has helped me a great amount. He sticks by my side and tries to get as much as he can done in little amounts of time.
We're prepping for next Wednesday and I got some blood work done to check my levels and see how everything is going there today... So for the next few weeks I will continue to go to the hospital for my infusion and then hopefully after the placement of the port we will be able to just go once a week to get the needle changed... That's hopefully the new plan of attack will allow us to do the infusions at home like we were doing with the picc and give us a little more freedom so we aren't constantly at the hospital.
My body is weak and I can feel that but, I know that I can get through this and I am fortunate to have so many people to stand behind me...
Tonight- This goes out to ALL LYMIES everywhere and anywhere-
I have met some of the most miraculous people on my journey to good health and you know how they say in the US Army an Army of One? I visualize us all as an Army of one. For we must band together to be strong and carry on to support each other and help each other through the hardest of days. I hope that each lymie that reads this will take this and know each night, I pray for every lymie those who have been diagnosed and those who are yet to be diagnosed. This disease is not fun and has brought down families of many. And together we're standing strong to carry on and fight the disease that many doctors are ignorant of. So tonight I spot-light a large group of people my support system of other lymie's and I say here's to a cure in our future! I am doing my best to help the cure become a reality and you can too just by sharing a little bit of light about Lyme Disease and what you have learned.
Thanks so much guys!
There is one person especially and specifically I am choosing to spot-light that touched my life very deeply in the last 24 hours and deserves some glory and fame. Her name is Joy. Joy to me is a very wonderful woman on the inside and the outside and I met her my first time I did a play at church she played a character who was quite humorous and always bickering with our other "neighbor" in the play. Over time Joy and I have had limited contact and she and I haven't always been able to stay in touch. Although when we do see each other there is one thing Joy never lacks and that's a smile. She is so upbeat and she is such a wonderful woman. She amazes me with her faith in God and her sincere compassion towards children and her family. She continues to be strong even throughout all of the adversities she has spoken to me and not spoken to me. She really deserves to be a special spot-light and I am thankful for her. What an awesome woman. Thanks for bringing Joy to my life Joy!I hope this weekend is full of lots of rest and healing... For church is just around the corner!
Thursday, March 27, 2008
Although very sore... The surgeon felt it would be best to get me home quickly because I have to go back next Wednesday to get my other surgery although less invasive I will be getting a port placed.
For those of you who asked why not do both at the same time- We of were not sure of the condition of my gallbladder and due to the fact I ended up staying the night at the hospital and the time of the surgery was much longer than it was planned to be and waking me up from the anesthesia was very difficult and caused some light seizure activity. So therefore we're taking it one surgery at a time due to the fact he didn't think with my body being so weak I should be taking so much on. Which made sense to my family at this time.
I am slowly walking and making steps to recovery but this is going to be a long journey! What a last few days... I plan on only visiting the hospital from here on out.
Sarah thank you so much for spot-lighting me! :) I am really blessed with such wonderful friends.
So after the past few days, I have so many people I am thankful for and blessed to have had such a wonderful amount of people come into my life. I cannot just choose one person to be the spot-light today. (Plus I have 2 days to make up for!)
We'll start with Kathy- I met her in the hospital elevator on the way up to same day surgery and I remember this clearly. She said "3 for us" and I said are you going to Same Day Surgery too? She was very calm and said yes. I was so very jittery and scared and flipping through the two booklets we had just picked up at the doctors office about getting your gallbladder removed. She said she wasn't scared seemed so at peace! I was very impressed with her. She acted as if it was no big deal and I admired her strength because to me, at any age... You're allowed to be scared of surgery! She was a really unique woman to meet and I am so thankful I got to!
The Same Day Surgery nurses and the various Pediatric nurses that were on shift when I was admitted were absolutely amazing and another blessing. It is so great to have a nursing team that is not afraid to hold your hand, rub your back... Ease you create less stress on you or pray at your bedside with you. It's amazing to see the talented ladies and how much knowledge they retain. What an awesome group of people. I am so very thankful that they were all there for me. They all root me on and continue to make me feel okay even though my pain was horrible and I wasn't very kind.
My surgeon and the OR team get the most credit! What an amazing group of people they were so calm and kind! I was amazed and put me at peace of mind right up to going into the surgery. I actually felt safe upon going under and was smiling and joking with the nurses until I was put out. And for all of you who didn't get to one while counting back- I would just like you to know.... I so got to one! :) And I even got to go to Ireland on a mini vacation while they took out my gallbladder in Elmira. :)
My friends also deserve an immense amount of credit because- those who have been there through all of this have been amazing. There are some who are just getting used to it and others who have been there for a long time. Like Sarah, since third grade to Josiah who is still learning about everything. They all are amazing and a wonderful support group to me. I am very blessed and thankful for them. Under friends, although I try not to double up I do believe I have the two stooges as pastors at my church. Pastor Chris and Pastor Tony are so amazing and I am so very grateful to have them in my life. They came to the hospital just in the nick of time to pray with me before I went off to surgery and then Pastor Chris came back to visit me today. They are wonderful people and are really living out God's will. I am so thankful for them especially because just having them there rooting me on... Calms my nerves.
My FAMILY is the most important and saved for the last. My aunts are very amazing... And so are my parents and my sister. They continue to show their love to me even at the most difficult of times and I am grateful for all of the people I have had brought into my life! What a wonderful group to have cheering you on.
Here's to a healthier and less painful night!
"The Lord himself goes before you and will be with you. He will never leave you nor forsake you. Do not be afraid; do not be discouraged."
- Deuteronomy 31:8
Post- Surgery, Thanks for the suckers Maddie! To the right is my faithful dog Buster and there's the lovely oxygen.... Yeah I was just waking up and everyone wanted a sucker from the awesome sucker bouquet and before sharing I wanted a photo of them.
So yep- now I am going to rest. Just thought you all might enjoy a few photos.
Wednesday, March 26, 2008
Also, a very good piece of news: Lis might be able to come home tomorrow also. This is super news. For those of you who don't know, Lis has been extremely helpful with the Lyme Walk and she is such a nice lady! Victoria profiled her below if you would like to read more about her.
And now, to follow in Victoria's tradition, I am going to spotlight someone of my own-her!
Victoria is such a nice person; it is so typical of her to include a spotlight person for every blog because she is always caring about others. Even though this is her blog, she wants to highlight others who she feels deserve the recognition. Even now, when she was in so much pain it was hard for her to breathe, she wanted to call me so I could update her blog to give information to all of you. When you were worrying about her, she was worrying about you worrying! It is so unfair that Victoria has to suffer like she does, but she does it with a smile and a determination that WILL someday change the world. There is no one else like her. Please take the time to post a comment to this message and let Victoria know that you were thinking about her while she was in the hospital!
Tuesday, March 25, 2008
I have to have my gallbladder taken out at 11 tomorrow afternoon at Arnot. I hopefully will be home by tomorrow night if all goes well.
They said they would also like to place a port within the upcoming week.
I am extremely tired but that's the update. So- no speaking for me tomorrow and please continue to pray for a quick and easy surgery and very quick return home.
My Spot-Light person today is-
The Volunteer at the front desk. I do not know this man's name but his devotion to his job and escorting people of all ages to their car is remarkable and I am very impressed with what he does. He's a great man and I am thankful to have such a caring compassionate person there.
Monday, March 24, 2008
Medical Monday- I have decided every Monday I will post a medical update on what is going on thus far.
First and foremost HAPPY EASTER- I hope every one's Easter was spent with loved ones and family. I know our Easter went well, and I hope everyone was happy and healthy throughout the day.
"Keeping looking up... that's where miracles come from."
Today I had an appointment with my PCP and I am just updating those of you who follow my journey medically with the past week-
We have been using my peripheral veins for IV's and they are going to continue to use them until we get further information from various tests that will be performed within the next few days.
I have been having increasing abdominal pain especially in my stomach cavity which brings concern to problems with my gallbladder. It especially increases with eating and is tender to the touch- after an evaluation from the doctor he feels it might be my gallbladder and wants to check it out with an ultrasound. He also is checking my liver function and depending on these tests depends on a lot of major things-
If getting a port is necessary
What the next action steps may be
If we choose to get my gallbladder out, to continue Rocephine or start something else...
If my gallbladder is going bad- we will probably discontinue the use of Rocephine but if all shows up well, we will be able to continue the use of it. Which is good because it seems to be working well. But a little scary for me since I am still not sold on the whole idea of the port...
Although we cannot rely on peripheral veins forever because many are shot due to increased usage and lots of pokes and have become corded veins which simply means scar tissue has built up around the veins causing it to be difficult to get into the vein. It can take up to 2 years for these veins to heal but they can heal over time. So with that after finding out the results of the tests we should know better if we will continue this medication or be switching and getting a consult with our LLMD about the action steps that should be taken next.
I have also been consulting with our homeopathy chiropractor in Owego and he has given me some supplements that will help with yeast problems and help with other things that my body seems to be lacking. We are all keen on him helping us and thus far he has helped me greatly. I wish we had went to him sooner! A few days ago I complained of my elbow bothering me, come to find out my whole elbow was out of alignment! Needless to say now a few days later my elbow is feeling much better!
Physical Therapy is helping me feel steady progress I am pushing myself a little to use the cane more and the walker less... Not only is it more convenient but it's also giving my muscles more of a work out. Although I think the walker might be used a little more tomorrow around the house because I have used the cane so much I have been a little weaker. Due to my lack of scheduling I was not able to get into Physical Therapy this week with my usual 3 appointments but will be called if there are any cancellations.
On the Spot-light-
Today the spot-light person is Abbie. Abbie has been in my life since I was a little girl and after having Spanish 4 together we started hanging out again. She has a sincere heart and is very kind and loving. I am very glad she is in my life not only does she come to the hospital but she is always trying to cheer me up and she has had me over to her house a few times, given me rides to school early in the morning (when I was still going hehe), taken me to sparkle, and most of all helped me feel a little less abnormal. She's an awesome person and I am so very grateful she is in my life. She can always make me laugh and she even tolerates me when I insist we look up what the names were of the baby spiders on Charlotte's Web! For all of you who care they are- Joy, Aranea and Nellie. :) She is an awesome girl and a wonderful athlete and totally rocks at dying eggs! hehe.
Friday, March 21, 2008
Larry- Today I visited one of the various units I stayed in at Arnot and ran into Larry, one of the nurses who took care of me. From what I hear he was a very kind and compassionate man and he dealt well with my situation. After only being in the hospital for a few hours he experienced with us one of the worst seizures I have personally experienced. He seemed like a really nice guy when I got to meet him and it's so nice to meet the nurses past being to the point of being super sick and not being able to remember a thing!
Kelly- Kelly has been a really good friend to me and has shown me a lot about true friendship. She wears the lime green bracelet proudly as she helps me continue to walk along this "unbeaten path". She is a remarkable friend and has stood by me through various ups and downs she is an awesome person and an amazing musician. She is one of my major supporters and always is there when I need her and tries to come visit me as much as her schedule allows. She has taught me some things that I would've never known and through our friendship I truly cherish her as a person. She is probably one of the most unique people I have ever met and I am so thankful for her friendship. She has stood firm since the day I met her and I can't imagine not having her in my life.
Makenzie- Kenzie has been a wonderful cousin to me and she is quite the strong 7 year old. She might look like a typical kid on the outside but on the inside she really has quite the personality and is quite a spit-fire. She has always wanted to come visit me at the hospital and spent countless nights at my house. She and I don't always get along but she is a really great kid! She witnessed a seizure, saw me go through multiple IV pokes and still remains a faithful cousin and still sticks around. I picture her as fearless and I think someday she will be a really big medical person! Maybe if the cure for Lyme isn't out by then... She will cure it for good! She is such an inspiration to me because I have seen her grow and aspire to be such an awesome girl. She is very intelligent and I am proud to be her cousin.
Chris- Chris is quite the character and an amazing person who has a very amazing story in his life. I am so thankful he has kept me in his life and he has taught me some major things. Through our time chatting and talking in person he has really made me think a lot about life and it's amazing to see how much change I can see in him through the past 2 years. Although we distanced our relationship and didn't see each other for 2 years it has helped us appreciate the things we have and we have become closer. He is a really neat guy and I am thankful for all of the conversations he has had with me and all of the aspects of life he has helped me think about from politics, to best friends he has always been a really neat person to talk to and someone who I have learned a lot about.
Lucy- On the outside Lucy might look like a typical teen but on the inside she is indescribable. She has taught me so much about myself and about making myself feel better even when I felt like I was never going to be happy again. She has helped me see that Lyme is a battle I can face and she is an awesome girl. She is very artistic and has an awesome ability to paint. She has really amazed me with the power she has behind her and I am amazed as we talk at what she has been through. She continues to tell me a story of her past that still can effect her future. She is really remarkable and another person I can be nothing but thankful for.
Sarah- Sarah is an awesome person and she is pretty much my teammate. Although for posting this photo I will probably be shot. It's the only photo I have of her alone. She has helped me and been there for me since wow about the third grade. Although we have drifted we have always maintained some sort of friendship. She has helped me a BUNCH with the Lyme Walk and she updates everyone when I am too sick to do so. She is pretty much the brains of the operation. She has worked out a lot of the logistics and I am really really blessed to have her on my side. Even though she is strong minded and I am strong minded she really works with me and together we work as a team. Her family all together has been a blessing to us and they work daily to help us especially with the walk and getting things done... Since lately our family has been focused souly on making me better! Sarah is really a one of a kind and I am so glad she is in my life. And this photo was taken at my birthday party and she was eating birthday cake- She got the first piece! It was quite a laugh and that's why I even have a photo of her eating.
Lis- Okay. So I cannot say anything short of amazing about this woman. She has encouraged me and pushed for me since day one and is actually one of the reasons I was re-diagnosed with Lyme. She provides so much for our area and has been a huge advocate for awareness and prevention of Lyme Disease I am very thankful she is in my life and she's an awesome woman. Just getting to know her and her family she feels like she is part of my own family. She is such a wonderful person and has a very generous heart. Most of all I ask for prayer for her throughout her battle as she is suffering the most out of this whole group at the moment and needs extra prayer and support through the upcoming days. She truly an amazing person.
There are so many more people I could list! This is only a fraction of my support that stand behind me but, these are a few of the amazing people who keep me going on a daily basis. They keep smiling and keep pushing forward and make my courage all that much more worth it. To everyone else I had to save some for the upcoming days! Since I am sure there will be many more people that will need to be spot-lighted. :)
First off are you positive you aren't out seeking attention?
The purpose of this blog is not to get attetion and I am not seeking attention. The purpose is souly for information for family and friends who I don't get to call on a nightly basis and tell them my progress.
I feel a lot of the attention it has gotten is souly because the people who come want to be here. If you don't want to read the blogs then don't come to the site it's as easy and simple as that.
For those of you who feel this is something that is ridiculous, ask the many who it has helped because there are people who come here and it has helped.
So Anonymous- There is a place for your name and use it or else your comments will no longer be published on this site. I am not going to go through and read your rude and bashing comments and furthermore no one else should have to. I am not doing this for attention and I don't want attention. So why the heck since you have a blog now written about you- face your fears and write your name.
Thursday, March 20, 2008
I am officially half time cane half time walker. And I am just going to leave it with glorious Physical Therapy today because the rest of the day has been crappy and I am sick of being sick. But that was most definitely the highlight of my day.
Is the spot-light person today. She has helped me overcome many hurdles and she also keeps me thinking of a bright future. She has overcome Lyme and is in remission I guess you could say and is working on building up strength to become a normal teen again. She's a very positive person and has helped me notice things in myself and helped me feel better even when I have been completely down at the bottom of my bucket. So she deserves some credit and definitely deserves the title to be yet another inspiration.
Jenn if you have issues with the wonderful photo of us you can tell me about it tomorrow in Physical Therapy. :P
Wednesday, March 19, 2008
The winter days are quickly passing and I can only hope that warm weather will be here soon to ease the aching joints and bring spring delight! I can't wait to see the tulips bloom again and soon the pot garden we are beginning will be able to sit outside in their pots and bearing vegetables of all sorts. For those of you who don't know- as a symbol of new beginning I have started a salsa garden and let me tell you the Roma tomatoes are growing like nobody's business. I hope to add some herbs and other veggies to our little indoor garden but right now I do believe we're working on 7 different types of seeds and they seem to be growing well. I will post pictures in another few days.
Physical Therapy was yesterday- and get this: I ran out of sweatpants!! So I couldn't really go with my work out gear in jeans so I decided that I would wear super cool socks instead and that's just what I did. Although I have some plans for the upcoming session tomorrow and it has been confirmed that I do have clean sweatpants for the event. Although I am improvising a bit due to the fact that I don't have a head sweatband but oh it shall be good. I also finally gave my physical therapist my blog site so she could check it out... So now she's probably reading this either approving or disapproving of all I have said about her. I am sure I will hear about it. :) We may even have to take a photo of the get up from tomorrow's session. That's just how good it's going to be. I have been progressing well- she has taught me how to walk with a cane and yesterday my dad took me to the store and we got a pretty fancy blue cane with white flowers on it. So I can practice around the house. Although I am noticing when I get tired that the walker is very handy to have because the cane isn't giving me enough support. But I am getting stronger which excites me.
We have yet to hear back from the doctor... He is trying to create a plan for us and we were told we should have it by Tuesday night- here we are it's Wednesday and we do not have a plan. So I am not sure about the IV things but I am going to the infusion center now and they have set it up to go through there rather than Pediatrics. So that's the plan at the moment since I do not have an official one I think that's the plan anyway. :-P
Things have been so chaotic I have been overwhelmed with my own life and any friends that are still talking to me I am amazed... Because it has just been so up and down. ER visits, hospital time, doctors appointments, Chiropractor appointments, and Physical Therapy. I am at the hospital every night now, I have to go to Owego 2 times a week right now for the Chiropractor, and I have Physical Therapy 3 times a week, plus my PCP throws in appointments at least every week or every other week it seems... So for those of you who thought it was a lot of sleeping being me- it's becoming more and more car rides and lots of appointments.
More than ever in my life I miss my old life and being sick is just kind of wearing on me... Mostly I think because I have lost contact with a lot of friends that I was talking to to frequently because I used to be the first person to contact them and now that I rely upon others to contact me... They don't really do it as much. And I don't have the time to sit down and actually think about calling people plus the service in the hospital is horrible. I guess you're not even supposed to be using your cell phone in the hospital but no one has ever said anything to me...
S0 that pretty much sum's up what has been going on lately. I am preparing to talk to a class the 26th (next Wednesday) as a favor for one of the teachers at school. Which I am excited about plus it will get my butt out of bed a little earlier.
My Spot-light Person for the day-
is continued from the other day. Jessica Stevens- This girl deserves two days of being spot-lighted and also needs lots of prayers. She has helped us immensely with my walk with Lyme and has become a close friend of mine. She is very confident in her faith with the Lord and despite her being so sick she has been able to continue with a positive attitude... She just had her 20th birthday this past January and she continues to fight on despite doctors saying she probably never will walk again and she is probably the worst case of Lyme I have ever heard of. She has so many problems but they don't stop her and she has kept on no matter what. And she gives me even more of a reason to fight for awareness and gives me a reason to keep getting better. She is such an awesome girl I can't say enough good about her! But most of all please pray for her- she is in the hospital and she's going through some very very complex procedures that are rarely used. Thanks for your support!
Hope everyone is enjoying the sunshine and have a wonderful day,
Monday, March 17, 2008
- I have learned that seeing friends in school is really important and really does help with motivation... Even though I didn't always love school.
- Nurses probably have the hardest job on the planet.
- Parents actually really do have the hardest job and I am amazed at how well my parents parent sometimes even though it's really frustrating.
- That nothing is impossible and allergies are always able to form.
- That social contact is REALLY important and I am not going to miss church this next weekend even if it means bringing me in on a hospital stretcher. (I need that refueling that I get when I go.)
- That really everything happens for a reason and that I have met some amazing people that I never would have met if it hadn't been for this disease- so I can't complain and that in itself is a gift.
- I have learned more medical terms and more about picc line's than many nurses will ever know or understand. And I am getting to know a lot about many different things that I never dreamed of and can use big words and know what I am talking about like Fibrin.
- Many people walk REALLY fast and that no one ever gets used to a teenager being sick and using a walker.
- How much 'normal' life really is taken for granted.
How important my family is to me even though I can't always show it. And how much I miss my dog when I am not home in my own bed. She's always there for me.
(I don't want to go into details but- I need some major prayer. Things have been crazier...)
My spot-light person is Jessica Stevens and I will post more about her later. For now it's just important you pray for her as well.
Physical Therapy tomorrow!
Friday, March 14, 2008
The beginning of the day I stuffed envelopes for the walk and lined things up for the meeting that night.
Physical therapy went very well today I did very good and learned to walk with a cane! It was exciting and I even added some wrist band sweatband thingeys to my Physical Therapy wardrobe. I worked harder than I had ever worked before on the bike and I worked with all I had. I did a lot of different things and it was exciting.
I felt a little better after physical therapy and was noticing improvement. I was noticing little things and I felt like finally after so many days of not feeling myself I was beginning to notice a step in the right direction perhaps a glimmer of hope.
I began to become a little weary and soon I was teary... I was not feeling so hot and I had a meeting to run for the walk that night. My IV was taking a little longer and everything started to spiral out of control. Soon I didn't know if I could be on time to the meeting- I was supposed to be there at 6:15 to meet Sarah so we could talk. Being worried about the picc line my mom was to change my dressing and she was and as she changed it I saw something that made my heart flip. There was puss coming from the site and I was scared to death. Infection in a picc is not something to mess with. My mom called the hospital did everything she could and I was worried that this picc would be out quick and a port would be the new form of treatment.
I am scared to death of getting a port- I am scared of every aspect of getting a port and no matter how much good people tell me about the port's I am probably still going to be scared.
My mom covered my dressing but upon covering my dressing we noticed a little ghostly looking airplane shape on my arm where the white airplane had just been.... We noticed wherever that was placed it was killing the skin beneath it and causing fluid to seep from the skin. My mom and I both began to think I was allergic to the line itself.
I was overwhelmed and for the first time I couldn't be strong I couldn't tell my mom I was okay and I began to cry and cry. I was so upset and so frustrated why can't anything just seem to go well? After all the hospital has told us that there was only one other case like me and come to find out after they figured out what was wrong with her picc she died! I was so overwhelmed with emotion yeah things weren't going smooth and I had a meeting to do and I was not ready for it at all.
I was frustrated with everything and an emotional wreck and I didn't really even want to go to the meeting but, I had a lot of stuff to deliver to the meeting so I had to go. So coming late I went and I didn't plan on staying long...
I handed out what needed to be handed out. I was in tears yet again and man there was no stopping them for the first time in my life I wasn't able to be strong and I felt horrible and my picc line was scaring me and yeah I didn't know what to do or who to turn to and I was crying in a room full of people! I was embarrassed to say the least and yeah tonight just wasn't turning out to be such a good night.
I wanted to disappear and then my mom got a phone call from the hospital and I had to go to the ER and let me tell you that's my least favorite place to go and everyone in there is so sick! Thank God they worked with me and got me a room quickly I was loosing my patience and loosing control of my calm quiet attitude I can usually obtain through these ER visits. I was stressed to the max and at any given moment I would just burst into tears. I just want to be a normal teen I wish my health was better and why the heck do I have to be back in the ER once more? I didn't understand and I couldn't figure it all out I was so sick of all of this medical junk. I just wanted out of that place out of the hospital and I wanted to be free of my IV and on with life.
Of course this isn't what was going to happen and the IV therapy lady had to come down and yes, it was one of them I knew come to find out I know all of them now and all but one has put a picc in me. I was so overwhelmed with everything by the time she got there I didn't even recognize her but she recognized me. I am a one of a kind patient with so many allergies and different problems and after all I have now been labeled a "complex case". So yeah everyone in the ER can know me by name they know my story and they can tell when I am not having a good day. I begged to keep my picc in over the weekend and they're doing all they can to do just that.
They cultured the puss and they put a special cream on it (something we know I am not allergic to!) they are going to re-evaluate the situation tomorrow morning and see if it has changed for the better or if it's heading for the worse and depending on the sightings from tomorrows evaluation depends on if I get the picc pulled or it stays in. Although since the IV team believes that I am allergic to the line they will probably have to take this picc out and I will probably end up with a port.
My life has been spiraling out of control and yeah there is no stopping it because when life takes over- all you can do is take it as it comes.
I had texted a few friends and I find it's even hard for them to keep up with my constant changing situation and it's hard for me to constantly update everyone. I don't know what to do and I feel completely lost. I keep praying and I know that God will pull through. I just don't know why this isn't working out better. I have seen many of my friends take the easy route out and they have drifted off and kind of are on a touch and go basis we talk a little here and there and a lot of the contacting is done by me. I miss all of them so dearly but my medical life is sincerely taking over!
I feel like I am in over my head. I don't know it's just an extreme thing and this just goes to show you that an ordinary day can be changed so quickly into a trip to the ER and a fast paced slip down hill. You can think you know what's going on but really there is truly never a dull moment. I miss my friends and it hurts me to know that they are all going on with their lives they are all going on with what was meant to be and all I can sometimes think is- that could be me too... If only I were healthy.
It's hard for me to understand or even comprehend what is going on in my life right now and yeah tonight is a real deep reality check for me and there were not many inspirational things said or happy moments as the day progressed. Things weren't easy but I got through them. One thing was said today that made me cry and that is that one of my Lyme mothers told me I was going to find a man and someday be married to a guy who cared for me and loved me and really genuinely cared about me and what I wanted to do. She told me what an amazing girl I was and comforted me and let me tell you sometimes that's all I need because I am so hard on myself I don't see the things others see. Yeah I was at the bottom of my bucket tonight and to be honest- I am only sharing this to you because-
beneath the surface of a happy face is a hurting child and I am not 100% happy and cheerful and even though I am not in the hospital my life isn't a perfect puzzle.
I am struggling each day and some days it's difficult to even get out of bed. I just miss being who I was before this disease even happened and I can't wait to be better. I want to make a difference and I am sick of being stuck home due to some medical condition or having plans ruined because I got too sick or having people fear me because I have had some not so ordinary things happen to me.
I would normally apologize for being such a mess, but I am not sorry because this is really what it's like and it hurts a lot. I don't know what the next minute or hour holds for me but I do hope it's peace and sleep because it's been a long day and I have a feeling the next few days won't be easy.
So this is a glance of what it's like to be me. It's not fun but I try to make it fun as much as possible and I try not to dwell on the horrid things that happen but tonight that's all can do because I am a mental mess and I cannot stop crying because I am so sick of being the sick kid.
More positive days to come,
P.S. There are a few people I would like to put on the spot-light but because my mother said she didn't want lies on here (even though they aren't and she really is an amazing woman) I will not include a bio but tonight- My parents are my spot light people and they are truly amazing because there are very few people who have been able to stand by me for the last 3 years of my life and they continue to support me and love me.with all they have and without them I would be nothing. So they are the spot-light people.
Thursday, March 13, 2008
She isn't even my spot light person but she's a really fun physical therapist. She has slowly been helping me get on track and helping me re-gain muscle tissue. We have done all sorts of things and it's quite a work out! Physical therapy is my favorite place to go and I am not just saying that- it really is the only place that you can go and actually feel and see your improvement from each time you visit. Right now I am going 3 times a week and we have a good time.
We have a good time because of course nothing in my life cannot be a little fun and she's also got a sense of humor. One of my first days I went to physical therapy I walked into the room to see a man wearing exercise gear. I laughed and said that I too wanted exercise gear for physical therapy.
My last session I went with sweats and a t-shirt and each time I go one more "exercise" item will be added. It's funny for us and I can't wait to ditch the walker.
Although going in my sweats this time made me feel a little different walking into my Youth Pastor's office because usually I am a little more dressed up than sweats and a t-shirt. So I just said I had physical therapy! DUH. hehe.
These last few days I have been doing a lot of thinking trying to find the real me. I have been doing a lot of different things and doing a lot of listening and a lot of talking.... I really feel the future that I have in store for me is very exciting and I cannot wait to see what happens next. The unknown can be one of two things- For most the unknown is something we fear and are uncertain of but I choose the other choice and I am excited to burst through the unknown doors.
I mean what is honestly so scary about the unknown? Maybe we can't predict it but it is definitely something we can find out about very soon. I am starting to have more confidence and more excitement and I am really excited to see what the future holds.
Lately I have been sleeping a ton which is part of the reason my blogging has slowed down I sleep almost all the time it seems. I slept last night from right after my IV til 10PM then was back in bed at 1AM then was up at 7 AM then went back to bed and slept til 2PM. All other days have been filled with sleep too. I hope this is my body's way of healing itself and soon I will be back on my feet (without a walker!)
Now I guess this blog wouldn't be complete without sharing the news as of yesterday- As you know I went to meet with my Youth Pastor while I was there I told him about what had been going on in my life what God was doing... He was amazed and I do believe a little teary eyed at points but hey that's okay I have been in the same place sometimes. Now this is where the heavy load was placed. He asked me to speak to our youth group. Now as you may not know I am not very familiar with our youth group so speaking with them makes me a little uneasy but I agreed. Then to top it off he asked me to speak TWICE!
Within the next few weeks I will be speaking to the Junior High kids on Sunday morning then-
All of my friends, and other teens that read my blog mark your calendars- I am also speaking at the Mix: April 27th at 5:57 in the PM at Victory Highway Wesleyan church. (http://www.victoryhighway.com/index.htm) I am a little antsy but I have a presentation ready to go. So all Senior High Students mark your calenders and come on out. The Mix is a really neat teen driven night at church and even though due to my health I can't go as frequently as I would like it's a lot of fun. There also will be lots of other teens there! Who knows you might even make a friend.
My spot-light person for the day-
This one took some thought. But I believe that Fahris Wyand is my spot-light person for the day. This little girl is 4 years old and has battled more than many 40 year olds. She is a great kid and probably one of the most beautiful children I have seen in my life. If you can get her to smile you will see she a brightened little face and to be honest when I see her smile I can only smile back. We met in Rochester when I was going through the Long Term Monitoring on my brain and Fahris was recovering from heart surgery. I had made all of the kids on the unit get well soon cards and her parents were one of the few that came by to say thank you. Fahris is an inspiration because on the outside she is absolutely perfect 10 fingers 10 toes beautiful blonde hair a cute little giggle and a bit of an attitude. On the inside however she has- Subaortic stenosis, dextrocardia (heart is on the right side of the chest), hypoplastic right heart(underdeveloped rt. ventricle), pulmonary atresia (lacking a pulmonary artery to take blood to the lungs),VSD (a hole between the pumping chambers of the heart, and as if that's not enough her blood return from her lungs was carried to the wrong side of her heart... After I met her family I quickly signed onto my computer and looked up her story and over time I have began reading every journal entry as soon as it is posted excited to see her improvements, and sometimes in tears reading a set-back. Her story gives me hope because despite being so small she has had a huge impact on my life and she is an amazing child. The latest journal entry left me thinking and made me want her to be the person I placed in the spot-light. This girl needs prayer like so many other children and I hope you will add Fahris to your nightly prayer because this girl sure does need it! Below I have placed the journal entry her mother most recently posted:
"Another week is passing and I again finding myself searching for that little glimmer of good this week. How I so desperately wish I could say....Fahris is still doing really well!! She is eating better than ever and slowly gaining back weight and she looks more like herself. Our hospital trips are less and less frequent and everyone is so overjoyed with the progress she is making.
So far from the truth that yes I have tears..a lot of them.
It's Morgan's birthday tomorrow and how hard to believe my "baby" will be 8. She is planning to have a few friends over on Saturday for a sleep over and we will take her out to dinner tomorrow night. We have been very stressed that Fahris is again showing all the signs we so recognize by now. Hoping she feels better by tomorrow or Friday I will have to have her seen again before the weekend. On Monday there were no surprises. Fluid building up again blah blah blah. We are most concerned that a cardiac catheter is in the near future. As I said it will give the doctors exact measurements of the pressures in her heart and chest which ultimately are the reason we are still dealing with this. We are really struggling..while the doctors want the information this test can give Kevin and I are only agreeing to it because we know Fahris can NOT continue like this. It would be so irresponsible of us not to continue this fight to try to make her better. Kevin said the other night that it's not fair to her to not keep trying...I said What of any of this IS FAIR TO HER!
Anyway I am quite sure you can tell what rare form I am in tonight..It's just been a tough few weeks in particular.
Please continue to send us your messages. I know I might not even know half the people reading this but it means a lot just to know you think of us and Fahris and say a prayer.
It's amazing how close you can become to complete strangers through sharing stories. I am so grateful for her in my life and thank you all for your support.
I can only hope there are more good days ahead,
Tuesday, March 11, 2008
Sunday- God taught me a lot and yes I know just who it was it was him. I am a firm believer he is out there and yeah he is answering prayer! Maybe just MAYBE yes isn't the answer to healing me quite yet. Which got me thinking even more. I had a very powerful Sunday but writing it on this blog- is something I don't feel comfortable doing. (don't worry for all the worriers out there- it was nothing bad I did not go into the hospital, didn't disappear, or any of that.)
Monday- Another busy day we had to get up early to go to Physical Therapy and let me tell you I am not a morning person when it comes to getting up and going out into the cold weather. I was pretty cranky and tired I haven't still now (Tuesday) recovered from the lack of sleep I got on Saturday. If you haven't been to a concert it takes a lot of energy sitting there with all the lights and stuff especially after a busy day.
I am not really sure there is much more to update I have a lot of thinking to do and I meet with our youth pastor on Wednesday. He is a great man and I have a few things to discuss with him. Things are insane in my mind and I may not be around for a few days because I have to simply have to sort things out. Nothing bad, but I have God tugging on my heart and if I need to listen because I have ignored it for many months.
The Spotlight Person? There has been controversay on my mere little blog here spoken to me of who my spotlight person should be.
I have not chosen a person that you can see but only a person you can believe in someone of greater standard but also a man that is my father.
“So whether you eat or drink or whatever you do, do it all for the glory of God.” 1 COR 10:31
This story that you read of my up's my downs- yes they are all part of his perfect plan. The affliction I have faced is not really affliction at all but a testing of my faith and I believe that Sunday after 2 weeks of praying I wanted things black and white he gave me just what I was praying for and perhaps that was my first mistake. I took it though and he gave it to me. He is working on me for the glory of Him. "But even if you should suffer for what is right, you are blessed. "Do not fear what they fear ; do not be frightened."Take Courage. "1 Peter 3:14
"being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.: Philippians 1:6 Or as Proverbs 3:5-7 states- Trust in the LORD with all your heart and lean not on your own understanding. in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. So as I live my life as I understand what is going on I have no idea what the future holds but, it is for the Glory of God I live my life and I am his to make his own. I will continue to live each day as I did before but knowing that it's part of something perfect. He has a plan and I believe that and it's perfect to no end he will empower me and as one man said- "just because you are walking with a walker does not mean you don't have mobility. You are not completely helpless." I surrender on to him. As a card I recieved in the mail states -
"Isn't it good to know
there's a Great Physician
who still does things
He makes house calls,
He's available 24/7,
and He cares for you
more than you can ever know."
I felt it was most important and completely correct that I did today and actually the last few day's spotlight person as God- the constant provider for us and the only person who will always be there. I live this life not for the glory of man but for Him.
So with one's thoughts I might offend someone with using him but I do not fear because if this offends you I have chosen him then perhaps you should re-adjust your favorite blogs.
I am signing off now to get ready for the doctors.
Sunday, March 9, 2008
Prayers are being answered. I was able to get in to the hospital and get a new picc line placed in only hours after the 3rd one fell out. So I did not miss any treatment and did not fall behind. Thank you for your prayer.
I was so inwardly focused so inward in thoughts I was overwhelmingly outward with my feelings of abandonment. Where I should not place my trust in man but to a greater spirit and not feel betrayed but to feel a greater lesson is learned. Difficult for me because never in a million years if you had asked me in 2004 would I tell you I planned to be walking with a walker, isolated from friends, at the hospital almost daily, receiving an IV and giving it to myself. No this isn't where I would like to be but yes, this is where I am. It has brought me to the bottom and now and only now can it go up. God has really touched me in some VERY big ways in the last few days and it really is all in his hands. The glory is not for me but for him and in a greater way his glory of using me as his vessel. "Yet, O LORD, thou art our Father; we are the clay, and thou art our potter; we are all the work of thy hand. "- Isaiah 64:8
In the morning we had a book meeting for the illustrations of the book that I am doing. It went well and we came up with some brilliant ideas for the book and I am excited to see what is in store. The girls I am working with are really awesome and very talented so I am excited to have this book published and see the finished piece. It is also nice to see the book coming together piece by piece photo by photo.
Then my mother had a jewelry party at the house and we got the necklace and earring set for my prom dress! I am really excited about prom all of a sudden! I think it will be another fun night and it will be nice to be a teen for the evening no thinking about medical things... Little did I know during that jewelry party I wouldn't only be making decisions on what to wear to prom but about going to a concert... We got a phone call that there were about 3 free tickets left to see the tour Boomin' Beyond Measure with- Jeremy Camp and Toby Mac at the First Arena. First of all I knew nothing of the concert and was a little leery but I thought it would be fun and heck it was free! (kinda ironic the local ambulance that takes me when I end up going in the hospital donated these tickets to a local church.)
Not only would this be my first official concert it was also kind of very last minute and I was contacting people just hours before the concert would be beginning! I didn't know who to call or who to turn to... I decided to text Josiah just kinda like hey I am going no matter what now but if you would like to come I have free tickets for the event and since he introduced me to Jeremy Camp I thought he might enjoy it. It was the last thing on my mind he would say yes. But he did and I ended up going to the concert with him. Josiah is my spot-light person for Saturday... (his bio is below)
The evening ended up being extremely moving to me and impacted me in a way beyond words could ever begin to speak. I was truly moved and inspired by the words of each artist. Through the Season of Silence- a testimony by Matthew West to the short words of Jeremy Camp about hearing stories and receiving letters. Everything seemed to fit so perfectly into my life many of the songs were very moving and one was even emotional to me although I had heard them all before seeing the man on stage was quite an experience. I was amazed. This also put me back into the realm of things I felt like a teen for those few hours and although the medical world didn't completely disappear it was almost gone and I was thankful for that. I felt like a teen and there is no word to describe the happiness and joy I felt in my heart. I felt complete and I felt like God had fulfilled my one and only request these last two nights, if he couldn't heal me could he make me feel a little more normal in my situation?
Josiah is a kind and compassionate kid. That's the first word that comes to my mind when I think of him. He puts many in front of his own obstacles and is a wonderful image of a Passionate Christian. We have known each other for years and within the last few months have become closer friends and kind of have tried to learn more about each other. He has helped me with my walk with God and helped me be able to put more faith in God when everyone else was asking why God? Last night, he showed his true colors being kind and attentive as any friend should be and being himself. We kind of got to know each other past IM's and it was nice. I don't think Josiah will ever truly know what the feeling of complete isolation feels like and no, I don't really either because at least I have this computer to keep somewhat in touch... Although I was really down and just being with another teen and being able to be out of the house different scenery and a completely different twist than visiting or your typical hang out setting I was overwhelmed with how nice it felt to be a teen to be freed of that feeling of being left out or missing out on life. It's so hard to see your friends call you or your friends lives seem as though they are passing in front of you as yours seems to stop. He truly made me feel like a teen despite my walker and saw past my "disability" making sure my parents came even though we ended up waiting around 20 minutes. He has helped me over many different obstacles and things that I feel it is only appropriate he is acknowledged for his efforts and I am thankful for this friendship and is well deserving of the title an "inspirational person- living an inspirational life."- Even if he did learn about my short term memory loss! :)
Another post will be posted later on today and today's inspirational person. Thank you for your prayers and support throughout this. Something that is not so much a battle but a journey of faith.
Friday, March 7, 2008
O.K. God you have my attention!
Sometimes you do wonder how much one can take...
Thanks for your continued prayer and support.
Good News! I did not cry yesterday after getting my hair done. It was a
relief. Today I feel quiet don't want to say much but do have a few things. Awhile ago my youth pastor shared with me how he disliked people trying to sell him things over the phone. He was like soon you end up in 20 minute conversations with them over their product. It frustrates him... So I got an idea I was intrigued by his disgust and like all of us usually are... Out for a
So I decided I was going to be Gretchen from a pencil company. I called his number and he answered right away."Hello this is Gretchen from the pencil company we would like to help you share the message Jesus has in your heart and speak to your youth through our pencils"Pastor Chris started laughing and laughing... He had no idea who it was! Although he knew it was a joke... Every other kid would be in school. It was great! Soon I told him who I was and he thought it was even funnier. So yeah a sick kid can have a little fun once in awhile.
Today is my first official Inspirational Person... I thought long and hard about this and decided it would have to be someone who was noticed within the last 24 hours of my life upon doing something.
Today is Pastor Chris & his wife Ashley:
Okay so I remember Pastor Chris' first year at Victory youth group was on Wednesday nights and we did some pretty crazy stuff and sometimes got really messy. I almost think messy is an understatement when coming to the one kick off Sunday when they covered the new youth room with tarps and we did all sorts of relay races. I thought that he was crazy. To let us Middle School and High School students run through jello, run with eggs, pretty much it was A LOT worse than 100 finger painting 4 year olds. I was like wow. This doesn't even feel like youth group. I started going regularly on Wednesday nights and I really enjoyed it. I had never had a pastor touch me on such a deep level. He spoke with a southern accent yeah, but that didn't compare to the messages he shared with us about God and he really hit home almost every time I heard him speak. Soon youth group was moved to Sunday nights and I was unable to come as frequently because of schedule conflict. Although I did and still do go once in awhile. He has been an amazing pastor at our church and brought in teens by what seems to be bus loads to our church. He has reached so many and is a wonderful man. He also always finds time in his schedule to come visit me while I am in the hospital. EVEN when I was way up in Rochester he came. He is a very devoted person and has really changed my life.
Now, I wouldn't be able to tell you about Chris without telling you about his wife Ashley. I don't know her well actually I do believe we have only been together on one occasion for worship and that was at a girls night out function for church. I went we made journals and the journal I made was the first journal I ever kept. I wrote prayers and prayer requests and that was as simple as it was because I was against journaling. Through that night she taught us a lot. A lot about being women through Christ and we did a lot of different but fun things. Her journal led me to journal on and now I have a new journal that I write in a lot. Through that one note she left in the journal she gave each of us it inspired me to reach out and see Christ on a different level.. Now I will admit I didn't take a leap and poof I was spiritual and I still have issues with faith every now and then but she was a big stepping stone to where I am today. I will close with her note to us and then a poem.
"A journal is not only a record of events that touch our lives
and change us, it is a private space in which we can meet God and see His hand
touch our lives through answered prayer. My prayer for you is that you will seek
the Lord daily and allow him to mold you into the person
He would have you be. I believe in you. Stay Faithful!"
In His Strength & Joy,
Now the poem:
DON'T GIVE UP HOPE
Hope gives you the strength to keep going when you feel like giving up.
Don't ever quit believing in yourself.
As long as you believe you can, you will have a reason for trying. Don't let anyone hold your happiness in their hands; hold it in your own, so it will always be within your reach.
Don't measure success or failure by material wealth, but by how you feel. Our feelings determine the riches in our lives.
Don't let bad moments overcome you.
Be patient, and they will pass.
Don't hesitate to reach out for help; we all need it from time to time. Don't runaway from Love, but towards love; because it is our deepest joy.
Don't wait for what you want to come to you.
Go after it with all that you are; knowing that life will meet you half way.
Don't feel like you've lost when plans and dreams fall short of your hopes.
Anytime you learn something new about yourself, or about life, you have progressed. Don't do anything that takes away from your self-respect.
Feeling GOOD about yourself is essential to feeling GOOD about life.
Don't ever forget how to laugh or be too proud to cry. It is by doing both that we live life to the FULLEST.
This is all for today. Enjoy the video! Hope you had a wonderful day.