Chronic illness aka Q&A edition 2.

Okay, well I told Amy B. she could ask some questions because she didn't know I was back in blog land. She is the only exception because I have a huge soft spot in my heart for her son Philip. So here are her two answers.
Amy asks:
As a young adult the same age as my Philip... How do you make it through the harder days when you just wanna feel like WHY ME? Or What if?

Honestly, this might sound cliche- however my hard days are gone through with either reflecting on worse days or worship music. I love worship music with all of my heart and soul. When those don't work I have a select few people that I can go to and cry or talk to. There are actually two girls I know of off the top of my head and one guy that I have called and they have listened to me cry for far too long. I feel really bad about that sometimes, however that's how I get through those moments. I love them forever, I wish I could tell them about how much I love them. The What if days... Those are far and few between for me, but it seems like when they hit the idea doesn't leave fast. It scares me sometimes especially when I know there is something off. Even something slight, I am on my toes and scared. I wish people knew what it was like to have a stabbing pain and within two days have surgery. I think after getting my gal-bladder out last year I realized that things could get serious fast and that scares me sometimes. Although being with Jesus is going to be awesome I can only imagine.

"Philip rarely has those days but when he does they are so hard for me as his mom...I would love to know better how to help him."

I feel like the best way to help, is to listen. Support him even if it is screaming right along with him, there is no promise for tomorrow for anyone, that's the truth. However the days we are here should be spent loving each other. Show him love and let it be known he is loved.

Do you have any idea how special of a young lady I think you are? I just am so glad you are back. I have worried about you when you left a while back.

Honestly- with two people saying this now. I really don't know if I do know how special people see me. I don't think I will ever know because I have learned when God is in the picture, somehow the unthinkable always happens.

This Question and Answer time has gotten me to notice how people feel and what they wonder when they look at me. If you have other questions even if they are trivial. Leave them around, I might do another answer time with them if there are enough. I really wonder sometimes what people think when they're looking at a teen that's really sick. However I look at them now and I feel like it seems more normal to me. There are a lot of very sick, very hurting teens and I mean physically hurting not mentally but mentally hurting too. Okay so both. I feel like it's something that is actually pretended to be little but I know quite a few.

I feel that the dealing with a Chronic illness isn't talked about a lot. I also feel like when you're a teen it's an awkward time to be sick. Right now I feel like I am trying to figure out who I am as a person like every other teenager that is going through this period in their life. They experiment with things they go crazy they sneak out they, well- they do a lot of things. I see my peers do things a lot and I think wow that's awesome or I am glad I am not doing that. However at the same time I am taking on the responsibility of calling doctors and making decisions. Decisions that could quite possibly affect me in major ways the rest of my life. No, I don't mean college. So for those things it's stressful. I also think that sometimes those things are ignored among my friends and sometimes adults that I associate with. I think I overreact to little things because I feel like one day I am going to wake up and that person might be gone. Yes that is a real fear I have.

This article made me feel a little more normal about some things. Although I don't agree with some of the topics on the list and could bring it down to like 30 some of them really hit the nail on the head.

The two below hit me personally because in the last few weeks I feel like both have happened and I feel really bad about it now. I am praying about a certain situation because I feel at peace about it now, but it felt like a huge deal a few days ago.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

This is The End of my Question and Answer and Answer time! Hope you enjoyed.

Question & Answer

Your homework is in: Here are the questions with Answers of course.

From BoufMom9

How old were you when you were diagnosed?

It was the summer of 2005, so I was 14 years-old.

Were you relieved or upset to have a name for your illness?

When I was first diagnosed I didn't know what to think. I didn't know what Lyme disease was, and I was just like "oh". I wanted it to be treated soon and I figured within the next month I would be fine. I never really knew much about Lyme disease until like last year. I didn't know about anyone elses stories really anyways. I just kept in my personal life with what was going on with me. I did know it stunk though. I remember Halloween my Freshman or Sophomore year, I went with my friend Melissa... We came back early and I got home and had a break down and cried and told my mom how sick I felt all the time and how horrible it was. She was so confused... We both were. I am sad now that I have been sick this long, however I have met some amazing people and for that I wouldn't trade it.


Finally, do you have any idea what an inspiration you are to others?

This is something I hear from people a lot. However personally, I have a pretty low self-esteem. I don't feel how I take what is handed me is any different than it should be taken. It is nothing special and I am not trying to be a big deal. It is just how I have to get through my life. Everyone has a story behind their skin, some just aren't as open as I have been with mine.

Melody asks:

What sort of activities/hobbies do you enjoy that help you cope with being chronically ill?

Well a. I am having trouble believing this is chronic because I fully believe God will heal me one day. So therefore I don't think I will be sick forever. Even if that's what the doctors say... Things that help me through the day are painting, and art, ah there are a few things. Well I love to paint and I love artwork. I have taken a liking onto making this book, it's kinda cool, just me experimenting pretty much. I also am a chronic dreamer so that is an activity in itself. I love to dream about things like jumping in mud muddles, laughing till my stomach hurts or twirling in dresses. If you know me in person and have known me for awhile- you know I will daze off once in awhile, I swear I am off in an awesome dreamland. I love to help others as well. If I could do anything in the world for the rest of my life it would be give back to the community. If everyone did that we would be free of a lot of un-happy people. OH and good mail. I LOVE MAIL. Giving and receiving. It's the best stuff in the world. It literally can make me SO happy. I think it's the best. I like to send packages too. Lots of them. So, some of these don't seem like they could make me happy- or deal well but hearing about the joy things bring others makes me feel like I count for something, as selfish as that sounds and sometimes remembering that makes me remember that being sick doesn't have that big of a strong hold on me. Oh, and I love to talk to my grandparents. It's something new I am enjoying that helps me remember I am still young and they give me advice, especially on college. My grandpa has had some really interesting points of view on it. I am thankful for family the most.

Ladies, Since you're the ONLY two people who responded to my post I have a little surprise for you, some good mail! Please e-mail me with an address to send it to! :)

See? Maybe if you responded to my posts you would be getting good mail too!!

Medical Monday

Now ordinarily Monday's are reserved for Medical Monday's so of course- I felt you all deserved some normalcy in my not so normal life.

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?

Lyme disease is caused by a spirochete (Borrelia burgdorferi) that is transmitted by ticks and can attack every system in the body. A bull’s eye rash may occur 50% of the time and often, a flu-like illness including fever, joint pain, and headache may occur. If left untreated, the disease can result in cardiac, central nervous, musculo-skeletal and psychiatric manifestations. All 50 states have reported cases, and it is found in 65 countries worldwide, including Canada. Lyme disease can mimic other conditions such as MS, ALS, chronic fatigue, Lupus, Autism and Fibromyalgia.


Protect yourself-
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!

Love,

Victoria

Spot-light

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! :)

Spring Has Finally Sprung!

Since today was the first day I actually felt like it was spring! I am writing in green! :) I was very happy to get to spend some time outdoors for the first time in what seems like eons. I got to take some photos of the flowers around our house and spend some time swinging. It's wonderful to finally have some warm weather to go along with the title spring! It's very exciting for me because I hope to be taking walks and doing other things in the upcoming days! I also got a a chance to use the photo shop on my computer and generate a little more artistic photo of the flowers along the back of our house! They are beautiful. Hope you enjoy them as much as I did and for those of you who can't make it outside here's a little spring for you-

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.

Silver is my spot-light person today.
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-

Lyme Walk
P.O. Box 74
Big Flats, NY
14814

Thanks for all of your support and enjoy the spring weather!

Love,

Victoria

Question & Answer

After receiving multiple different questions I decided to post a Q&A post for all of those who are a little confused.

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.

Spot- Light!

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!

Love,

Victoria