Wednesday, April 16, 2008

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 ( 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 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!




Anonymous said...


Another reason I feel you continue fighting this disease is for all of the Lyme victims and their family members. Some day we will see a better test for Lyme and better treatment and better knowledge in the doctors we so trust to help us.

Thanks so much for fighting so hard,

Rob P.

M Levin said...

You mentioned needing to use a cane or a walker for your problems with balance and strength in your legs. I know someone with multiple sclerosis who has the same kind of problem. I'm wondering if this is a problem of the brain, spinal cord, nerves, or muscles, since I'v heard their are tests that can narrow down where the problem is. It might help you since for my friend there were other things her doctor found that helped find a diagnosis so they could put her on the right drugs. Her multiple sclerosis doctors are great. Maybe a neurologist could figure this out.

Best wishes,


Anonymous said...

HI Victoria,

Great post, I learned alot about the IV, pic and port I didnt know. Your grandfather sounds like someone I could sit with for hours and just listen to, thank God for the people of faith he plants in our lives as sourses of strength and examples of faith in the Lord regardless of circumstance!
I have an "adopted" Grampy Glen. He's my spiritual grandfather. He too is very ill right now and could use your prayers. He has asbestosis, a lung disease, and recently got a chest flu; he nearly died. Yet in all this when he could speak it was encouragment that flowed from his lips and you can feel his love for God...what an awesome prensense!
My eyes are pretty much all better now, and Im still improving slowly with Lyme and babesiosis. I think my headache, one that I've had for over 4 years now despite all meds, is getting better.....I'll be so glad to see this one go. God is faithful.
The sale of our house didnt go through and we dicided to rent it out for a year. We've been landlords before....I think I'll enjoy it more this time.
Prayer: God our Heavenly Father, in the name of Jesus we come before you, the king of kings. You know know us so completely, so intimetely. Lord continue to heal Victoria and Glen, You know thier need and you also know what purpose this serves in our lives better than we ever will. Give Victoria strength in body and spirit, we thank you in Jesus name...AMEN!

As I wrote this your music was playing in the background: "Holy,holy holy is the Lord God almighty" it was beautiful, I love to worship God. I was a song leader in our church before I became too ill to sing....I can sing now again Victoria! Im not up in church doing it yet but soon, God is so good. Talk soon.