Sick is the norm. Olivia gets through the day in pain, but with a smile on her face!
Unfortunately Olivia has to stop a medication that was very helpful because we simply cannot afford it. Between the medication and her braces we had to make a choice. She needs her braces finished and we are praying through fundraising we can end up being able to get her back on all the medication she needs. If you can help Olivia, that would be wonderful. Please share this page!
Thank you all!
Olivia is on a whole new treatment protocol now. She is on 3 hours a day of IV infusions and oral meds as well. This new treatment is causing a bit of a relapse as it is targeting a different co-infection. It is a tough thing to be 15, try to live a "normal" teenage life all while being very sick. She puts on a good face during the day, but crashes at home. She is in a lot of pain, has severe headaches, has a fever frequently, her hair is brittle and thin, her nails peel, and she is drawn and quite frail. She will not give into this illness willingly though! She has plans, dreams, and aspirations! She sets her sights high and gives it all she has and much much more. She truly is an inspiration!
Olivia has had to have her Picc Line replaced twice this past few months, and has had other troubles with it that have required another hospital visit. We still have weekly visits from her nurse. She still has her braces and there is no projected date anytime soon for getting a them off. We have some things that are covered and some things that are not and we fall quite short because of it. If you are able to help offset any of her expenses, we would be extremely grateful. We try as hard as we can to make it through, but this illness is very difficult to make it through on our own. Thank you all for your prayers and kind thoughts!
Olivia has been doing increasingly better every day! We are so thankful! She is still on her daily IV medications and several strong antibiotics that are very hard on her system. We go up to St. Paul MN to see her specialist at the end if October. They are long days as we leave early, spend a few hours at the doctor, and then turn around and come home in time to be back for her brother Darin when he gets out of school.
We are anxious to see if she is able to go off of a few of the meds. They will most likely give her different strong antibiotics that will focus on a different co-infection. She will continue to have the in home nurse for her Picc Line care for quite a while. She is a strong girl!!! We are thankful for the progress and pray it continues. She knows she will regress with the start of new medications, but she is seeing light at the end of the tunnel and she now has hope! Continue to pray for her and if you are able to contribute any amount for her continued treatment and care, we would greatly appreciate it. Thank you all!
We are thankful that Olivia is doing a lot better than she was just a few months ago. She is able to work a few days a week for about 3 hours, she isn't nearly as fatigued as she previously was, she is able to do a bit more now. She has really been enjoying being at work again. She will be doing online school this year as she is not recovered enough to be in school all day, 5 days a week. She also will be getting a med change within the next month or two so that is going to make a relapse. While the new med kills off a co-infection she will have major affects from that just as she did with the start of the medication protocol that she is currently on. We are so happy to see the improvement.
We have been experiencing some issues with the insurance refusal to pay for certain things recently. Right now we are in a battle to get the home health nurse paid for. We also will have a visit to her doctor in the future again. The trips require aproximately $350.oo. I recently had to sell my car because we found mold in our kitchen and bathroom. We have completely gutted the kitchen and had the mold taken care of. Now we are working on getting everything to replace what we had to rip down. Selling my car has provided some cash to buy some of the things we need. It certainly has happened at a bad time! I am not hiring things done as that is much too expensive. I have been doing this project with my sister and my mom! My younger brother put together a sub floor and I have learned how to use some tools I never thought I would!
Life can certainly be an adventure, some period are very difficult and some can be wonderful. I just have to find joy in even the difficult times! We may not have much, but together as a family, we have have everything!
Olivia has been having some very difficult times lately. She has had a lot of pain and discomfort. She does her best to stay hydrated and tries to eat what she can. She doesn't have much of an appetite at all, so she has become very thin and weak. We need to make another trip to her doctor in St. Paul. The trip will be costly and we need to pay the doctor up front, plus traveling expenses. Any donation is much appreciated, every little bit helps tremendously. We appreciate everyone's love and support.
Olivia had a busy week! She went to the doctor on Tuesday and things are looking good so far! She had some slight improvements that we are very happy to see. The doctor said it is still a long road a head, but we know the medications are working! Thank you God!!!!
She had Grand this weekend, which is a for her service organization that she is a part of. She is a grand officer again this year. She has held up as best as possible. She is enjoying being with friends and doing something she would normally do so that is good, however, she has had a lot of pain that she works hard at masking when she is around people. I am sure she will be exhausted when she gets home, but she went and that is huge! This is the first thing she has been able to do in months.
She is going to be taking drivers ed soon so she will be able to get her license in April. We don't have a suitable car for her to practice driving as I had to sell my decent car a year and a half ago to get her braces, so her best friends dad said he could take her out driving to get some practice. She is so excited about driving:) I love seeing her excited about something, she has had to dealt with so much pain at such a young age and having something to look forward to is what keeps her going.
We appreciate all of your love and continued support! If you have not checked out her website yet please do: www.lymielivi.com
Summer is here! Olivia is doing her best to stay positive about the activities she is missing out on like shopping with her girls, movie nights, sleep overs, bon fires, days at the pool, and all of the typical teen life business. It makes her sad, but she is too sick to be able to attend and she understands that. Her boyfriend visits her a lot as do some of her little cousins so that usually keeps her entertained. She has had a really rough week which even included a trip to the Emergency Room in the middle of the night this week. It has been an exhausting week for her. The other issue she has is her liver enzymes have been elevated and her white count is off as well. Her doctor is monitoring that all closely. She is on so much medication it can get so scary. We know we are in for a long summer and are just trying to get through it the best we can.
She just went and had her eye exam on Friday and her new glasses should be done this afternoon hopefully. Her other ones completely broke a few weeks ago and trying to get along without any has been difficult. Her vision has become slightly worse since she has become so sick, but that is common. Please continue to pray for her. This is a very long and difficult road for such a young girl. Thank you all for your support and love!
Olivia has had some good days that she has been able to do a few things that she really enjoyed. I took Olivia, her best friend and Darin her brother to get pedicures. That was the first major outing she has had in a while. She loved getting a little pampering with her best friend. Olivia has been having some difficulties on her medications. Her liver enzymes have been slightly elevated so her doctor is keeping a close eye on that and a few other labs. She has been having a lot of chest pain and breathing difficulties which seen to hit her at night the most. The newest problem is how dizzy she is. She is extremely dizzy all of the time. I still don't leave her home alone for her own safety once she falls. This is a lot for such a young teen to go through, but she handles it well. One day at a time :)
Olivia's more intense treatment is going pretty much as planned. She is pretty sick, weak, and tired from it which is to be expected. We have made a decision about her schooling too. She will be enrolling in an online school to do classes through. She is too sick to go the necessary 12 hours for the current program. I think this is a good solution for her. It has been difficult for her lately because it gets old just being at home so much but she just can't do too many outings.
We are having different bills coming in and other things coming up that will be quite expensive including her braces. We appreciate any and all donations. Thank you for all of your love and support!
Olivia had a few good days this week :) It is wonderful to see her smiling and in a playful mood. She still has a really bad headache, but she deals with that...as long as she can be up and feeling good for a few hours then she is a happy girl!!!
Olivia has had a couple horrible days. Her new medication is a great one to treat one of the co-infections, however, it has side effects of stomach pain and vomiting. Olivia suffered horrible stomach pain for since Sunday night. Last night she began vomiting at 3:30 am and slept for a while, woke up at 7 and threw up until 11:00 am until I was able to get medication called in to the pharmacy and picked up to make the vomiting stop. She was sick approximately 15 times accompanied with horrible pain. Her doctor said to cut the dose and slowly increase it every 3 days. It was rough and unfortunately is not over, the first month of taking this medication is very difficult.
It is so hard to watch her in so much pain. I want so much to be able to help her and make it better and I can't, nothing makes it better. This is a long road, treatment will be long and very difficult. I wish it wasn't such a hard disease to treat, I wish there was more acceptance, more knowledge, I wish the insurance companies didn't require you to go into battle with them just to pay for the medications, but this is our reality and I am my children's only parent in their life. They need me and I will be the one who rubs her back while she vomits, I will be the one who lets her feel comfortable enough to fall apart in front of, I will be the one to be there because I am her mother and she not only needs me there...she wants me there. I just want Olivia to be better, but I realize it will be a long hard journey there. We appreciate all of the support we have received from so many different people. Please Share our page, we truly need any amount of assistance. Olivia is a sick, sick child. Please help her.
Pure Pain from Treatment Video
Fell asleep after being sick from meds
With May just around the corner, Olivia has been working hard to do her part to help raise awareness for Lyme Disease. May is Lyme Disease Awareness Month, but to Olivia, every day should be an opportunity to raise awareness.
Olivia recently appeared on the local 5:00 news for a story on Lyme Disease and how it is affecting her. She also was interviewed by our local Waverly, Iowa newspaper and they ran a story on her and Lyme Disease.
The lives of our entire family have been drastically affected by Lyme Disease. Olivia is not able to be a "normal" teenager and do the things teens are out doing. She is home alone unless her friends visit her and her visitors are quite limited as her friends are too young to drive. I have had to put my entire education on hold, I had to pass up an opportunity to get into my program of study this year as my name had been moved up on the waiting list, I can't leave Olivia home alone because of her neurological problems so even a trip to Wal-Mart for the necessities is tough unless her boyfriend happens to be over or if she can go there for a couple hours, her brother has to try to be quiet while she is asleep which is a lot, he has to try to be helpful to his sister who he wants to be mean to, and he has had to learn that we have to go without a lot of things because some medications are not always paid for and our trips to the specialist are not covered by any insurance at all so traveling out of state and paying all out of pocket really adds up. He is slowly learning there are a lot of expenses all together.
Insurance and Lyme Disease is a confusing thing. The problem is that, the CDC has not put out accurate information about Lyme Disease and the treatment of it. Because of this, the insurance will generally only pay what the CDC recommends, which is appropriate for someone who has just been bit. They have not recognized Chronic Lyme or admitted to co-infections which also need to be treated which creates a huge problem for Olivia and many others. We are all at the mercy of the insurance companies. We just pray it covers so we can struggle with other areas because we know soon enough, it will be the medication again. It is even more difficult for our situation because Olivia's father refuses to speak with us and the insurance company cannot legally talk to me either. This makes things so hard to try to get insurance problems taken care of.
We are just praying to somehow sail through these next 5 months of treatment with some positive results!
Please check out the links below to see Olivia on the news and to see her news article!
5:00 News Story:
Things have been touch and go with waiting for insurance to come through on Olivia's new prescriptions. They are quite costly and the doctor has sent off a full report of our visit as she said this will be the first of many we will be doing like this. We just cannot go through this every month because once Olivia begins this treatment she cannot miss a single dose or a single day for 5 straight months or we have to start back at day 1. We just keep praying that everything will come together smoothly and that she will be able to be back in school next fall. She is such a strong girl! It amazes me to see her determination and strength. She really tries not to let things get her down, if its nice out she will take our little dog Meika outside and she will sit on the steps and enjoy the air, she went on a few errands with her grandma and out to lunch with her the other day and that was such a treat, she had her cousin come visit her for the afternoon on Saturday and they enjoyed hanging out together, and her best friend stopped by the other morning and hung out for a while and had a lot of fun too. She has been doing a nice job of getting her website www.lymielivi.com
put together and she has been working on more blog entries, which is good for her to reach within to express herself.
She still continues to have neurological symptoms that I cannot help but worry about. The other day she asked me how to spell "catch" then she asked if it started with a "c" or a "k" and I spelled it out and she looked at me bewildered and said, "you mean it has 2 T's in it?" Also the other day she was really thirsty and she looked at me asked me for a drink and while fanning at her mouth she said, "oooh, I am parched.....or is that something you do to an egg?" It is just things like that and they seem to be happening more and more along with the clumsiness. Please continue to pray for Olivia and continue to share this as she needs all the help with her expenses as she can get. We appreciate everything everyone has done to help her and our family. We could not get through this without all of the support we have received from everyone. Thank you!
Olivia did a fantastic job talking with the news reporters yesterday. She looked so at ease during the segment they showed.
She did a little online shopping last night with her birthday money that she received since she can't really venture out to the malls. Her boyfriend had a great idea of getting an inflatable baby pool for our yard this summer, since she won't be able to swim for many reasons including the Picc Line in her arm. So that is a fabulous idea because she loves being outside in the summer time, but she will be to sick to do the activities she normally would. We are coming up with ideas of keeping her occupied at home so she isn't too bored or lonely :)
Olivia recently had an incredibly generous offer from a new friend. Kent Larsen is donating funds from each volunteer fire station that he is working with in his Insurance business! He has already raised $400 thanks to Jesup, Shell Rock, and Fredrika!!! If you would like to participate, please call him at 319-322-8334. Thank you Kent!!!
Have a blessed Easter!!!!
These are difficult to watch and hear, but these are not even the worst moments we have had. This is the sad reality for Olivia several times a week.
A more difficult day in Lyme
Audio only: After Prom for Liv
To my beautiful, intelligent, loving, talented, and so very very strong daughter Olivia Camille: HAPPY 15th BIRTHDAY!!!!! I love you more than words could ever express. I am amazed at your strength and grace as you get through each day of this, I love that gleam in your eyes when you pick up your little baby cousin Nora and love her so much, it's like all your pain for that moment disappears! I love that you feel so deeply for things in this world and other people, you are the person that wants to beat this not for yourself, but for others and that so you can help them! It takes a special person to have such depth at just 15, Olivia, you are that person! You have a gift from God....You are always the Olive Branch of Peace and Goodwill! Happy Birthday my sweet Olivia!
Olivia's 15th birthday is on Monday! She is happy because she got her gift early from me. I was going to resign our phone plan and I could do it 4 months early with using my "belief points" so that was yesterday. I had enough points to get my phone for free and her an iPhone 5c for only $50!!! Can't beat that! So Happy Birthday to Olivia! She is happy:)
She has had an extremely difficult week and has not been doing well. She has had a lot of pain and discomfort which brings me to my next point. We have some home modifications that need to be done. I have a close friend whose husband has volunteered to do all of the construction work for us. We need to make a few things more safe for Olivia and are needing funding for the supplies to do that. We need some newel posts and and spindles to build a safe banister, we need green treated wood for a small front platform area, 2 pieces of the moisture resistant drywall, and rails for outside steps that come up my small hill. All of these things are to make things in my new home more safe for Olivia and her condition. She also would like to have a little porch swing that hangs from an A-frame type swing for the yard as she can not go out for walks and she enjoys being outside with Meika. :) Thank you all for all of your love and concern
We have had a lot of people ask about Olivia's father during all of this. I had a difficult time deciding weather or not to really answer any questions regarding him, but I feel as if we are pretty much baring our souls here anyhow.
I left my children's father 12 years ago after a a very difficult marriage that contained much turmoil. We basically had to leave when he was gone at work with the clothes on our back and start from scratch.
Since that time he had seen the children regularly up until almost 4 years ago. Then he stopped seeing the children all together even though he lived 20 minutes away and went to church a few times a week about 3 blocks from our home. My kids went without a phone call, birthday card, Christmas card, or any contact initiated by him that entire time until last October. October of 2013 my son,Darin, reached out to him. They began seeing each other a little, although their dad never tried to contact Olivia other than to take her to dinner once. They got Christmas gifts this year. Olivia's dad has made not one inquiry about her illness when I have tried to inform him of it, she has told him and he has asked no questions, Darin has even filled him in a little but still no comments or questions from her father. Recently their dad backed out of some plans Darin had made with him for about the 4th time, and Darin has very high anxiety about his relationship with his dad, so Darin expressed his upset with it (probably said things he shouldn't have) and his Dad told him he no longer was welcomed to their house and now he refuses to take his calls. Olivia sent her dad a text at that time expressing how her dad hurt Darin's feelings and that she couldn't believe he has ignored them for so many years, she told him she was extremely ill and asked him if he even cared, she told him she has had frequent episodes where she cannot walk and she is forced to use a wheelchair. She let it out, which is very rare for her, he never replied!
He pays child support because it is automatically garnished, he is supposed to help me pay for her braces, but told me she wouldn't die without them so they are not medically necessary. So I sold my decent car and bought a junker so I could pay for them. He is supposed to pay part of their medical costs, but that requires taking him to court and that costs money that I don't have to do that and not to mention, it is stressful to be in a court battle.
It is easier to just go with Olivia's term for him, "The one who shall not be named"
As I Reflect on the week I know God is leading us in the right direction, I can feel it. Olivia see's the cardiologist in a week, she will see a Lyme Specialist in the Twin Cities on Tuesday, and has prom on Saturday
Just being them!
It has been an extremely tough couple of weeks for Olivia and I. She started falling, then having blurred vision at times, occasional slurred speech, convulsions, more intense chest pain, more intense heart palpitations, and she has had a headache for 4-5 straight days. She wears sunglasses in the house with the lights off. We went to the one specialist and had several tests ran that we are waiting for the results on and he presented us with a treatment plan that would require us to travel to and from Chicago twice a week for 2 treatments a week that would cost $1400 a piece. He has an excellent success rate and a good turn around time. However, I don't have reliable transportation nor do I have the ability to pay $2800 a week plus the cost of travel. We Plan to see another specialist to see what they recommend for treatment. At this point I have handed it over to God and I feel He will lead me in the right direction and I will know when we are there. Because of her neurological problems we don't leave her alone for her own safety. I do everything I can for both of my children and it is hard! Please pray for us! I know that God will help us through! Thank you all!
We have a whole new batch of medication that is coming tomorrow... Please help us raise enough money to pay the total amount due! Please share this!!! Olivia needs to raise $250 per day. Challenge all of your friends to donate at least $15 ....If even if 1/4 of my friends donated $15 each that would pay for over half of her weeks worth of treatment. On top of that I just picked up her new oral antibiotic at the pharmacy and that was $55. Please help my daughter in any way you can! Thank you all!
Feeling really rotten tonight:(
Treatments are becoming more intense for Olivia! She needs all the help possible! Please share her story and help if possible!
Medication cocktail....$250 a day!
Olivia had a nice night! Her boyfriend came over to visit after he got done with school and then she went out to dinner with her best friend! This has been pretty much her first real outing in days and even though her chest hurts, she really enjoyed spending time with her friends! Thank you Aria and Isaiah for being there for Olivia and caring about her so much!
Olivia has reached the end of the 28 days that her insurance paid 80% of the daily $250 for her IV medications. We are now responsible for 100% of the cost plus all of the other mounting medical bills. We are also trying to get a tudor for her as she is only able to attend school half days and only about 4 days of the week. We appreciate all donations and all of the wonderful support from so many wonderful people! Olivia is an amazing child with a beautiful outlook on life, I am so very proud of her. Thank you for all of the continued prayers and positive thoughts!
Olivia is hanging in there. She is getting daily IV treatments that have been really hard on her. We have decided it would be best for her to attend school just half days for now. The whole school day was just way too much for her to get through. She is remaining positive and keeping her head held high. She was recently asked to prom by a sweet boy from school so she has that to look forward to as well as her orchestra trip to New York!!! Keep her in your prayers!
Olivia is home today. She has been pushing herself very hard and she decided she needs to rest today. It is so hard to give in to that and it makes her so sad to not be able to push forward, but she needs to let her body heal. Please keep her in your thoughts today and if you have any words of inspiration for her, please share as she really needs her spirits lifted today! Thank you!!!
Olivia is taking everything one day at a time! Here is a moment of serenity at her favorite place
Olivia on the dock at Briar Lake
This is Olivia's mom- Olivia took some pain medicine and spent a lot of time resting and went to a movie night at her friends house! This has been her first movie night since this summer:) She was so excited to go! I am sure she will be feeling it tomorrow, but she needed some girl time! Loven Livi!!!
I am so happy school was canceled for today! My best friend Aria came over in her pajamas to spend the day with me! I really miss seeing my friends and hanging out with them, since I have become so sick I haven't been able to do much of anything so I have missed my friends so much! Aria and I can have a scary movie marathon!
Hanging out in our jammies!
This is one weeks worth of my medication (this does not include my pain meds, heart med, vitamins, supplements or any of that) this is what costs $250 a day...Yikes!!!
My sweet puppy give me lots of love when I am so sick:)
Meika and Me
Lots of Love for Livi tonight! She is having such a bad night. Every part of her body is in screaming agony, she is aching hear to toe, her skin feels like it is on fire and her eyes even hurt:( I had to help sit her up in bed, undress her and put her pajamas on for her because she cannot move. Please keep her in your thoughts and prayers tonight, she needs as many prayers as possible tonight!
Amber (Olivia's mom)
We just received a statement about for the IV medication... $250 a day until deductible is met and then $50 a day because INS will pay 80% for 28 days total and then will not pay anymore, so we will be responsible for 100% of the $250 a day. This is only for the IV medication and doesn't include home health nurse, regular prescriptions, hospital bill for Picc Line procedure, regular lab work, regular doctor visits and her braces. Picture of statement below:
IV medication statement
Olivia had her Picc Line procedure done today, she did great! She is exhausted which is to be expected. We have the home health nurse scheduled to come tomorrow to give her the next infusion. It has been a very stressful day. Pictures below!
Lymie Livi once was bit
on her tiny little tooshy
by a creepy little tick
Poor Lymie Livi
was sick for years
always in pain
no doctor could dry her tears
Lymie Livi's uncle said one day,
I know what is wrong
What the doctors wont say
Lymie Livi now knew
was caused her to be sick
and it all came back
to that creepy little tick!
This is Olivia's mom
This is what I will be getting tomorrow! I am so scared. They have to string a tube in my arm, through my chest and down into my heart AND that thing has to stay in for months! I am getting really freaked out! My appointment is at 12:30 tomorrow :(
Picc Line Diagram
My mom sneaks pictures of me when I have passed out from being in so much pain. It is mentally, physically and emotionally exhausting...I get mad when she takes these pictures:(
These are a few pictures I had banned my mom from posting...actually she is forbidden from taking pictures like these, but she says it "breaks her heart" when she see's me passed out from pain and exhaustion. So this is a small glimpse of a bad day for me. I fall asleep sitting up and usually with my glasses still on. I can relax to sleep when I am in so much pain if Meika, our Min Pin, comes and cuddles with me. She helps me relax.
By 4:00 on any given day
I am so excited to go to All Star for Rainbow this weekend! I just don't want to over do it. I had a pretty rough week so far and haven't felt too great, in fact my friends little 6 year old sister could tell I didn't look ok yesterday, it broke my heart that she could tell. I want to have a great time so I am going to rest as much as I can today and tomorrow! Wish me luck...plus, I need to memorize my whole part (it's a lot like a speech competition.)
Me and Aria at Rainbow a event!
I cannot thank everyone enough for their generosity! It just amazes me to see such loving gestures from everyone...even people I have never met! Thank you all so much
I keep my smile on, my head held high and tell myself it will all be ok! I like the pictures from my good days:)
Living with Lyme....on the good days!
Trying to hang in there:( It's been a difficult couple of days. I have to rest up for All Star for Rainbow! I will not miss it!!!
I am not feeling so great today:( I had to stay home from school which I absolutely hate to do....so I am attaching a picture of happy times! This is me with all my Rainbow Girls!
Olivia made a "go fund me" page to help with all of her medical costs as they are adding up very quickly. We appreciate all of the kind words of encouragement during this difficult time. She is very nervous about the Picc Line:(
To all parents: How far would you go for your child if you had to watch them beg you in tears not to give you their treatment because they were already so sick from the others (keep in mind they are like chemo?) How far would you go for your child if you watched them become pale and utterly exhausted from an outing that consisted of getting a heart monitor hooked up to her? How far would you go for your child if you had to carry her to the bathroom and to bed at age 14 and then undress and redress them? How far would you go for your child if you held her in your arms looked in her eyes listened to her tell you in slurred speech that she was in so much pain that she couldn't handle it? How far would you go for your child if you held her head in your lap, stroking her hair as she had convulsions? I would go to the ends of the earth. If you would be willing to help me in that process I would be so grateful to you. Please help my daughter
Hi, my name is Olivia Evans-Whiteside and I have late stage Chronic Lyme Disease. I am only 15 and my bills are adding up very fast. I have to see my doctor very frequently, I have several prescriptions that have been costing a lot. Many of the medications don't agree with me and it is just money down the drain. I also have to take several vitamins, supplements and some special food that I can get down. I have a Picc Line (a catheter that goes up my arm and to my heart to deliver medication straight into my heart) and I get daily IV treatments. I have an in-home nurse that visits weekly to change the dressings on my arm, check on the Picc Line, sticks my other arm to draw my blood, and monitors my health. We also have my braces that cost a lot every month as well and my insurance isn't very good so we have high co-pays. Because my dad refuses to help pay his 75% of my braces, my mom got rid of her Jeep Liberty and bought a really old junky car that doesn't run well (no wipers, bad brakes, makes noises like a dying cat) so she could put a down payment on my braces and make the payments.
I have several health problems directly related to the Chronic Lyme. I get hives almost everyday and Benedryl does nothing, I get covered in other rashes that itch so bad, I have terrible insomnia but sleep aids make me hallucinate, I am in constant pain everyday all day, some days I cannot walk, I have collapsed and my mother and brother had to carry me to my room, I get migraines almost daily, I have blurred vision, I have heart palpitations and am just starting a med for that, my chest always hurts as if bricks were dumped on my chest, I am starved for air and nothing helps it, I get confused, spaced out, I can't always get the words I need from my brain to my mouth, sometimes I don't understand simple things, my mood is up and down and I am sad a lot, I don't want to miss out on the normal things of being a teen so I push myself pretty hard and that also pays a toll on me. I haven't been able to be in school since February, I had to take a leave of absence at my job that I love so much, Dairy Queen, I can't take a simple walk for more than a block because I become too tired and my joints hurt too bad to go any further. I watch people walk by my house and it makes me so sad that I can't do any of that. Even a trip to the movie theater is difficult. I volunteer time for a service organization I am in and hold a Grand Officer position , I have played the violin for 5 years and I have been active in Speech at school.
I realize my mom is very dedicated to me and my health as well as my brothers and she is trying to finish her education so she doesn't have a lot of money for all of the things it takes to try and kill all these nasty little bacteria buggers. She has had to stay home with me because I am so sick. Since I have neurological problems she can't leave me home alone. She does everything possible for us, but since she is unable to work because of my illness it makes it very difficult on our family.
I am thankful my mom is so dedicated to me and has fought to get me all of the medical care I need. She searched high and low for the great doctor we are currently seeing. We have to travel up to St. Paul Mn to see her. We always have to borrow my grandmas car or my cousins because our car isn't road worthy to go that far.
This illness has been very emotionally, physically and mentally trying and I am doing everything I can to keep it together. Thank you so much for reading and considering. I appreciate it! XOXOXOX
4/7/2014- Well, things have really changed since I first wrote that :( I am no longer able to go to full time shcool, now I do a 12 hour a week program to keep my core classes so I don't lose those credits. I haven't been able to work at DQ in quite a while, I had to take a leave of absense which makes me really sad because I love it, I haven't been able to work at the dome, go to a Rainbow event, or pretty much even go on a walk. I am lucky if I can even walk! I started having nuerological problems. That means the Lyme is affecting my brain. I have been occassionally falling, having blurred vision, slurred speech, I sometimes have convulsions, I have days I can't walk at all and have to use a wheelchair at home. I have been having really bad brain fog too and I can feel it, I don't like that at all. I don't like feeling trapped in my house with my mom all the time.
4/13/2014- I went to prom with my sweet boyfriend Isaia and it was fantastic! We had so much fun. We had a fabulous dinner at the Water Street Grill in Waverly! My moms friend Christine at Photography by Christine did a whole fun photo shoot of us the the day before!!! We stayed out only until 11:30 because I couldn't handle any longer. I did end up in severe pain by 2:00am and my mom stayed up with me all night long, took care of me, and rubbed my back. I am still glad I went even though I had all the pain.
We have found a great Lyme Specialist who we are very happy with! The office visit is $300 for the first visit (because of a sliding scale) and $100 for follow ups. We will need $780 very soon to send off necessary lab work that insurance does not cover. Luckily my grandma drives us up because my moms car is not reliable for a trip like that at all. We also need to make some changes to our house to make it a little safer for me since I have been falling down the stairs or just unable to walk at all . My moms friends husband is going to do all of the construction work for us, but we just need to get the supplies. Currently we are trying to raise donations to support my lab work, some medications, and the construction supplies. Its not a lot of contruction supplies luckily:)
And.....TOMORROW IS MY 15th BIRTHDAY!!!!!! Going to the cardiologist for my 15th birthday,wonder if he will get me a cake. hmmmm....
Hey...check out my website! I am working on it a little more!!!
*I have it linked to my mom's facebook page since she can answer questions better, plus she knows way more people than I do.
*Please "like" our family facebook page: http://www.facebook.com/thegreenribbonfamily