Neurological Symptoms of Lyme Disease

The neurological symptoms of Lyme Disease can be frightening and maddening when they first occur.  I know for me  the worst neurological symptom out of this list is the overly sensitive hearing and then the next one would be sensitivity to light.  The hearing sensitivity can quite literally send me into rage, which is scary for those around me.   It is crazy how just a tick bite can do that to a person!  Does anyone else have these neurological sensations/symptoms?  This link is the link for the hearing sensitivity, but if you look on the website there a ton more neurological symptoms including things having to do with ears, eyes, touch, etc.  



http://www.tiredoflyme.com

Then go to articles
Next go to physical symptoms
Then click on Bizarre Hearing Symptoms of Lyme Disease 

This website has a lot of knowledgeable information that could be useful for Lymies, but I particularly found this article relevant to my situation.  



"When the root is deep....there is no reason to fear the wind."

What Comes Next?

This illness is sucking the living day lights out of me; I have never felt so depleted and lifeless in my entire life.  I just hope and pray that I get better soon.  I don’t have a ton of time so I am just going to give you a few brief updates on my life. 

You know how they say when you are at the lowest point in your life that you turn to God well I went to church about a week and a half ago and I can’t say that I hated it.  I actually felt comfortable there.  It was an unusual, but welcoming feeling.  I am going to go back. 

In addition, on the 20^th my arm with the PICC line in it had swollen and my instant reaction was to go to the ER to see if I had a blood clot because last time there were two blood clots.  They did run a Doppler ultrasound on my arm, an X-ray on my chest to make sure the PICC was in place and EKG because I was having chest pain, but all “appeared” normal the doctor in the ER declared.  He did say it was swollen but that could have just been from overuse and I am very good about not overusing my right arm so I was very surprised to hear that, but anyways ya know the drill! 

Then I went to my LLMD on the 23^rd, which was an exciting visit because I did not have my parents for the first time and instead I had my friend Taylor with me.  I had a list of concerns a mile long, not even an exaggeration.  Her main concerns were the blood in my urine, the ear infection that I have had all summer (which she thinks my body is not recognizing as an infection because there are more important things that need to be addressed), my Babesia symptoms, losing weight, not sleeping well, and pain radiating from my spine.  So, she kept me on the same protocol but added Bactrim for the ear infection.

Here is the protocol:

Week 1 + 2

            M,W,F : Lactoferrin 500 mg 1 daily and Xylitol 4 tsp once daily (8 days only)

·      Merrem 1g IV twice daily

·      Clindamycin 900 mg twice daily

·      Bactrim 1tab twice daily

·      Mepron 2 tsp twice daily

·      Artemisinin 200mg (4) twice daily

·      DURING WEEK TWO à FLAGYL 500 mg TWICE DAILY on Thursday and Friday

Week 3+4 OFF WEEKS

This is only my antibiotic regiment.  She increased my Ativan at bedtime to one full tab to help with nightmares that are frequent with this protocol and to help me sleep better overall.  Then she also increased my Neurontin to 900mg in the morning/ 300mg midday/ 1200mg pm to help with all of the pain radiating from my spine plus my “absent” seizures.  I am also going to begin dosing Marinol in the morning as well in an attempt to increase my appetite.  I never thought I would have the problem where I would not want food, but I am literally at this point eating to live not living to eat.  I only can taste spicy and all of my taste buds are thrown off.  Everything tastes so different and I just don’t want it; I push it away from me.  In addition, she recommended that I upped my Trazodone dose to 150mg, but I tried that and it gave me a MAJOR hangover effect in the morning so I think I will stick to 100mg.  Has anyone else ever had that affect with Trazodone?  Lastly for the ear infection I was given Astelin nasal spray to try and open my Eustachian tubes, so we will see how that goes!  Wish me luck!  Life is always full of surprises. 

Now enough talk about doctors, time for a funny story so I had this goal before the end of summer to do a split and I finally was able to do it!!!! For about a second when I heard a crack on my left side and of course I pulled my adductor maximus according to my physical therapist.  But I still was able to do it!!! I know I am crazy, but I did my end of the summer goal and that proved to me that I can do anything I put my mind to.  That may not be the best example but still. 

In a previous post I have mentioned my friend Linda being very sick and not having a ton of options left, well I saw her yesterday.  We ran into each other randomly she was in the car and I saw her husband first then I saw her, just lying in the car…looking weaker then ever.  I hopped out of my car even though it was not in a place where I should have just hopped out of my car it was kind of in the middle of the road, but I did not care I just knew I had to do this.  She slowly began to get out of the car and as soon as she saw me she began to cry then I began to sob.  No words had been spoken at this point it was just holding each other and sobbing.  Her husband had stepped a good distance away because it was scary.  We did that for a little while then she told me she was going to Vassar to drop Clancy her son off at college.  “She was being a Mom.”  But what happens after that is what I wonder.  I am scared to death.  I had never seen her so weak; I think of her as my Harrisonburg Mom and can’t imagine her not in my life.  And that solidified a lot of me.  I am asking anyone and everyone that reads this blog to please pray for her.

I feel like I never know what to expect anymore, things just keep catching me off guard. 

“Please don’t judge me, You don’t know what it took for me to get out of bed, look as presentable as possible, face the day & face the world.  You know nothing of my daily struggle.”   

The Entrenched Fight

Scratching on the walls that compose my body,

From the inside out

Pounding on the walls hoping someone will save me,

Just one person.

Year after year the fight becomes more entrenched in my soul.

Meanwhile my soul begs to be freed.

How much longer?

That is the question that longs to be answered,

I need answered as I pant, sob,

And lose my mind,

Do I even have much more time?

-Jamie


"Every test in our life makes us bitter or better, every problem comes to break us or make us.  The choice is ours to become VICTOR or VICTIM!  

Perfect Day Gone Downhill By Evening

Yesterday was an amazing day until the evening.  My sister and I were able to share an experience that I do not think many others are able to say they share.  Now that she is a pilot, she was able to take me up in Bill’s plane (the man who financed part of her getting her pilot’s license).  She was so official; she knew exactly what she was doing and there was not what second where I was nervous or remotely scared.  I was very proud to call her my sister not that I am usually not proud to call her my sister.  She was so relaxed flying; it was her element.  I could tell that was her hobby and that was way where she was happy and in her zone.  She read me all the rules before we took off, and did all the precautionary measures before we took off and before I knew it we were in the air and it was so smooth compared to Southwest!

Me getting ready!!!

My sister and I in the air

We were able to fly over my house, my grandparent’s house, my Uncle’s house, my Aunt’s house and my cousin’s house all of which were in Pennsylvania!  I couldn’t believe what usually takes an hour drive was about a ten-minute flight and the views were gorgeous.  I would take flying over driving any day now.  I wish I always had that option.

One of the views from the plane

The view of my house from the plane

My Uncle's house from the plane

After flying, my sister and I did a quick bonding trip into Old Navy; we literally spent probably 13 minutes in there and wracked up quite a bill.  It was funny running around asking each other if we thought it was a good buy or not; I was honest and so was she.  I think we got some good items that I am excited for fall.  Since I have the PICC line I personally like to wear a lot of shirts that come to my elbow and Old Navy had a ton so I lucked out!

Then after that I headed to get my blood drawn and then to lunch with Susan always a treat.  Lunch with Susan was inspiring; she brought me to tears because she does not even realize how much she does for me.  She was telling stories of her really sick days to remind me that I will get through what I am going through what I am going through right now.  We talked about coffee enemas, spending thousands on unnecessary clothes, taking Mepron until you gagged, and the list goes on.  She is going back on treatment next week and we decided to be treatment buddies that will support each other through anything and in a weird way that gave me reassurance and hope.

After lunch with Susan, I headed to my friend Heather’s to start baking and creating sides for her engagement party tomorrow.  After dating her finance for several years and now having little Stevie she is finally engaged and is having an engagement party!   I am happy for her and cannot wait for the wedding next September!  I am a bridesmaid and can’t wait to start helping her with anything she needs.  Heather is a great listener and has always supported me and listened to me whenever I needed it.

State of the art cupcakes :)

Finally after my work with Heather was complete because I did end up helping her create a registry at Macy’s, I headed home to have a goodbye dinner for my sister since she was leaving in the morning for Notre Dame.  I was actually really excited to get dressed up and go downtown to the inner harbor for dinner, but as soon as I got home and saw that my Mom had taken my clothes out of the washer and put them into the dryer, I became enraged.  Literally enraged.  I couldn’t go to dinner.  I shut down.  I was screaming and crying.  She shrunk one of my favorite new dresses and I do all of my laundry for a reason.  The worst part was she didn’t understand why I was so upset; my Dad and sister understood that I can’t handle certain things whereas my Mom after all these fucking years still doesn’t get it.  I think that was the biggest wound out of everything.  I was so disappointed in myself that I couldn’t go to this dinner for my sister, but I had to miss it.  I was a wreck and I couldn’t pull it together.  I sobbed and panted until I gagged myself to a vomit then still continued to cry as I held the scrapbook my best friend Paige made me.  I had never felt so lonely, disgusted, hurt, upset, angry, etc.  I punched the wall.  It was a disaster; I hyperventilated until I passed out because I apparently was asleep when my family got home and I never went to sleep.  I hadn’t been like that in forever, what a setback.  I couldn’t even do it for my own sister.  Lyme rage.  How do people control this?

“As with any journey, who you travel with can be more important than your destinantion.” 

Detox, Detox, Detox!

Detox, Detox, Detox.  I am trying as hard as I can to detox, but I feel as though my body is not detoxing as well as it should be.  Yesterday I took over a 2 hour nap on the couch and then last night by 10:30 I was exhausted.  I was so tired I needed to go to bed I could not stay up another minute; luckily I slept until 7:08 with only one interruption at 4:30 where I needed to eat something.  I think that is a direct result of me not having enough in my stomach before I go to bed and then also my sleep medication because I know I am not fully awake when I am doing these activities, which could definitely freak someone out if they witnessed it.  It used to happen a few times last year when I had roommates in college, they would see me do bazaar activities in my sleep.  Hopefully it won’t be as big of a problem this year as last year!

Also, I have been doing lactated ringers every day since it is my off week, just trying to flush out my body of all of the toxins since I know that I am feeling toxic.  I keep crying or becoming emotional when a thought pops in my head, it is hard for me to talk to me.  I feel like I am embarrassing my family or myself.  Hopefully these lactated ringers, which are composed of sodium, chloride, potassium, and lactate, will help contribute to detoxing my system.  I do understand that it is not just one thing that helps detox your system and that it is many things that detox your system, which is why I ordered a coffee enema kit!!!  I am definitely losing my mind if I am becoming that desperate.  My friend has tried them and has found them very beneficial especially for disposing of parasites and for brain fog, memory, and MOOD!  I will do anything for mood literally anything so here we go trying coffee enemas; I am out of my mind.  I ordered the kit yesterday!

School starts on August 26^th and with each growing day I become more anxious and more on edge about how the semester will end up.  For me, I need school to keep going; I have been advised numerous times to not go back to school by my doctors because of my health because the stress is not good for me.  School gives me a purpose; it gives me something to wake up for every morning and look forward to.  I may hate the stress at midterm time, but at the same time I thrive on it.  I need it.  No one understands that.  I have thought about taking the semester off so many times, but for some reason I can’t; I am afraid of dying.  Staying home is an invitation for death in my eyes. 

But we shall see I still have two more weeks to get organized, figure out my schedule, detox, go to the doctors, and decorate my house!  All I know is that I am doing the best I can given my situation in my mind and that is all that matters.  It may not be what others would do, but no one can judge me unless they are in my situation and have been through everything I have. 

“Enjoy the little things in life…for one day you’ll look back and realize they were the big things.”

Crafting, Symptoms, Emotions, Oh My!

My crafting has gotten out of control; I find it so therapeutic that I can’t stop.  Journaling, crafting, and working out are the only activities where I am distracted enough to not think about other issues in my life, mainly health issues.  My mind goes numb while I am doing these activities and nothing else seems to matter, it is truly the best feeling. 

My glitter clothes pins!

I am growing more anxious for school to start and for the social scene at school because I have truly isolated myself this summer.  I deactivated my facebook, I don’t always respond to text messages, and I haven’t made an effort to stay in contact with my friends because of my current state of health.  I needed the summer to focus on myself to be able to return to school in the fall and to be honest I am just hoping I’ll be able to make it through the school year.  I can’t have any of the episodes that I had over the summer during the school year and the protocols are only going to get worse; they do not get easier.  Since I have not spoken to many people over the summer I hope I am able to reintegrate myself back into the social scene and if not to be honest I am more of the study hard person not the go out person.  I am a very determined person that does not need distractions.

On Sunday, I was able to visit a good friend of mine from JMU who graduated and now works for the Marriott.  I think we both needed that night to be honest; I know I hadn’t laughed that hard in forever.  We went out to dinner at Uncle Juan’s and had our waiter and the general manager running circles around our table.  We even got a free dessert out of it because the general manager just thought we were so beautiful (that is me getting a little cocky), although he did think we were charming and had a lot of potential in the real world.  It was nice to laugh, to have guys flirting with us, and just to be with Rachel.  I love northern Virginia; it’s so different from anywhere I have ever lived or been exposed to.  I hope I can visit her more; I know she has a busy schedule but I am fine with coming up to visit her to literally have dinner, spend the night, and leave early in the morning; that is what friends are for!!!

Now things have been strange for meà I can’t seem to express my emotions properly.  They aren’t coming out normally.  I have been getting overly angry, but not overly sad and I am trying to express sadness because that is what I am feeling and I don’t know how to reverse it.  I feel so backwards!

Symptom differences in the past few days (add to the list)à

-More zoning out for longer periods of time

-More electric shocks down my arms

-Not sleeping

-Very tight neck muscles and mid back muscles

-Knee, hip, and ankle pain (knees are the worst)

-Extreme fatigue

-Still have the ear infection

-Air hunger

-Hurts to breathe sometimes

Yesterday I was able to see my friend Heather for a few hours and catch up with her and little Stevie to see how both were doing!  They are doing great and she is already well on her way to planning her wedding; I am so happy for her; here is a little photo on how big Stevie is getting!  He wasn't a happy camper because I was trying to feed him a bottle and he just wanted his Mom :(

Also, yesterday I got a lymphatic drainage massage because I felt toxic and I knew I needed to detox; it is an off week of antibiotics so I want to detox as much as possible and what better way then to stimulate the lymph system!  It was a great massage now I just have to see how today goes.  After the massage I came home and napped for an hour and 10 minutes then got ready for a special dinner for my sister for earning her pilot’s license.  At the dinner, I felt out of my mind; I was completely overwhelmed by the 20 people and I felt so sick.  I was itching to get out of there; I didn’t want to talk to a soul.  I couldn’t even make eye contact with people and I was super exhausted and felt nauseous.  After the dinner I came home and ended up going to bed at 9:45; I had a splitting headache and had to take a Vicodin just to help ease the pain a little so I could fall a sleep.  Luckily though I did sleep from 9:45 to 6:30 which for me is a lot of sleep believe it or not!  I know doesn’t sound like a lot but it is. 

On a different note, I am trying to build questions to ask my doctor when I go in a week and a half.  Here is what I have so far… I am open to any suggestions or other blood tests that I should have or medications or cremes or anything I should ask about!

·                               Arterial venous blood gas test

·                             Quercintin and Voltaren gel

·                            DHEA blood test

·                           Ask about the chronic ear infection in my right ear

·                          Phosphatidylserine -->Should I begin taking this?

·                           Other detox measures

·                           Bentonite clay

“The pessimist sees the difficulty in every opportunity; the optimist sees the opportunity in every difficulty.”  

Lyme controversy

This article depicts the disease to a T! Very informative article that everyone should read!

http://www.sheamedical.com/the-battle-for-the-truth-about-lyme-disease

My Sister is a Pilot!

I have been up and down for the past few days. I got another ear infection which in my opinion was a major set back. At my last doctors appointment they mentioned the term neuritis for describing my ongoing ear infection problem and to be honest I have no idea what that term means! Each doctor that sees me for an ear infection is like oh wow this is definitely inflamed...and the unfortunate part is that I always follow protocols to a T! 

Sorry for that rant it was just on my mind. On Thursday I was always on my way to my therapists house because she didn't har fixed space and I really needed a visit and this just so happene to be a Flagyl day as well and I had never been to her house, AND the worst part of this saga is that I got pulled over for speeding. I literally hyperventilated I was running late and I had taken an alternative route because a train had stopped the road and the speed limit was apparently only 35 how was I supposed to know! I could have easily just taken the ticket and asked when my court date was and apologized from the bottom of my heart, but boy I acted as though my life was over in that moment. I am still alive; I don't know why I hyperventilated. The officer had to ask me if I was safe to drive myself to therapy and if not he could drive me myself. I was so bent out of shape over a ticket there is so much more to life than a ticket.

Speaking of which I ran a 5k yesterday, how ill never know; I think it was a miracle. I ran it in honor of my friend Catie who passed away September 1st 2010. The race was to raise money for juvenile diabetes and I did it last year every time I do it I feel like I must run it and I have to run the entire thing. I feel like Catie is with me and pushing me. This time though I felt my heart over working which concerned me considering I had my heart problems in the spring. I go back to the cardiologist this week and will tell her about this. I ran it with my friend Jen and I was glad to have her support.

Catie's mom and I 

Pre run

Post run

Also yesterday my 18 year old sister got her pilots license and I could not be more proud. Tears are pouring out of my eyes as I type this because I wish she knew how proud I was of her, sometimes I thin she thinks I am mocking her or am super jealous and yeah I am jealous but I am also incredibly proud to call her my baby sister. She passed with flying colors. Tuesday a man that payed for a portion of her flying lessons and allowed her to use her plane is throwing her a huge party. I am very excited for my sister she deserves recognition for being a female pilot now she is one of 30,000.

My sister leaving for her test with the examiner!

First photo after she passed!!!!!

After my sister received her pilot's license I headed down to northern Virginia to see my friend Rachel who I hadn't seen in a while. I have missed her so much ad we had a great night; I hadn't laughed that hard at dinner in awhile. I need to come and visit more often because I realized how much she does mean to me and how much I value her friendship. She isn't that far from my drs, my home in Baltimore, or JMU so this shouldn't be a hard friendship to maintain. She graduated from JMU last year so I love hearing about her adult world adjustments and how it's been having to so everything herself because she moved there not knowing a soul, her family is in Richmond. She took a leap of faith and it's been an adjustment, but I also think she doesn't see how much progress she has made. But them again no one ever is able to see it in themselves!

Now for a medical update! I  finally on my two off weeks!!! Woohoo!  I have still been bruising like crazy...sounds like Babesia to me! I keep not sleeping well even when heavily medicated and on the go for the day. It's very frustrating and when I do sleep I am getting nightmares so maybe I am actually afraid to go to sleep I have no clue I just know it is a problem! In addition my joints specifically my knees have been hurting something terrible. My mood is still not remotely controlled... I have anger outbursts and tears at the drop of a dime! It makes me not want to be around people because who knows what could happen and I end up embarrassing people. 

Other symptoms 

-electric shock down my arms

-nerve pain right calf

-uncontrollable hand/finger movements

-tendon pain

-heart palpitations

-memory is getting worse

-then all the other usual symptoms that I talked about in the past two weeks like headaches, muscle pain, focusing issues, zoning out, etc.

Blood work from last week!

 Luckily I have been finding peace in crafting. When I am crafting nothing else matters.

For the dishwasher at my house!

Affirmation stones

Mailbox for the house at JMU

"Even a disease is an experience to remind us the value of good health."

The Marathon Not The Sprint

Lyme disease is a marathon and anyone who has it or any of its coinfections or is even a caregiver to someone with it can attest to that statement.  I am always looking for the quick fix and with Lyme there is no “quick fix”; it is slow and steady wins the race.  I am tired of this marathon and tired of people telling me that it is a marathon.  I like 5 k’s.  I have been overly emotional recently due to the die off reaction of the spirochete; I can’t seem to stop crying.  Everything sends me into an emotional outburst of tears that just pour out of my eyes.  It makes me want to resist being in public because I never know what is going to send me over the edge or whom I could be around when I am going to start to cry.  Plus, my memory has been really bad not just Lyme bad, but over the top bad.  I can’t seem to remember anything and I hate it.  Even when I write things down I can’t remember it; I have a calendar and a journal and I still miss appointments!!! 

My newest concern though is that my Babesia is taking control of my body.  I was at physical therapy yesterday and just from light manual stimulation from my physical therapist’s hands I had a bruise on my back from his thumb and I have been having some blood in my urine, not to be confused with a UTI.  I am going to message my LLMD and see what they suggest I do because I know that this cannot be a good sign.

The bruise that is literally a thumb print

In addition, I did bikram yoga yesterday as a detoxification mechanism to try to sweat out the toxins in my body and boy did I sweat!  It kicked my ass and in a way I attribute that to me being sad about Paige being gone.  I am still trying to cope with her being back in California; I know I will see her soon but still it is a hard loss for me because she was keeping me going with her positive, supportive energy.  After though I felt great, way more alive after I got all of the toxins out of my body.

This is the second week of my protocol then I get two weeks off; thank the Lord!  Almost there!  This Clindamycin makes me so nauseous!  Also I am going to try to get a massage this week to help push some of the toxins out of my body because I am beginning to feel toxic again and I cannot afford a toxin build up again similar to last time.  Everyone else believes in me now it is time for me to truly believe in myself. 

One of the hardest things I have been wrapping my mind around was seeing my second Mom, Linda on Sunday in the arboretum and her telling me that she was close to death.  I could see it in her eyes and in her body; I could sense it.  I am afraid that after her two sons leave, that she too will leave but not for college like them.  I am afraid of losing her; she has been such a supporter in my life and I love her deeply.  She always introduces me as her daughter; she always did want a daughter.  She has two sons and I love having a family in Harrisonburg that I can go to if I need anything or if I just need some peace and quiet or someone to talk to.  I have never been taken in like the Green’s have accepted me.  I am going to do anything I can to try and help her.  She has Lyme, Bartonella, Babesia, Mycotoxicity, and many other chemical sensitivities.  Maybe I am wrong and she will pull through; I will pray every single day for her and if others can too it would be greatly appreciated.  I can’t afford to lose her. 

 

Linda and I

 "Don't let your struggle become your identity"

Letters and Moving, Two Different Emotions

As some of you may know, my summer goal was to write hand written letters to people to because I have realized that is what matters and that is what is appreciated.  A text or phone call does not mean near the same as a hand written letter that is received through the mail.

Anyways, I wrote my friend Susan a very detailed letter about how I am thankful for her friendship and how I am thankful to have her support each and every day with my Lyme disease.  She is the person who got me to my current doctor and who has continually checked up on me during my harshest protocols; she understands  what its like to go through hell and still be alive.  She texted me last night saying, “I got your book and card today… that was so incredibly sweet!!!! Know that I am that the lucky one that somehow you found your way to me.”  This was just a portion of the text but sometimes all you need is a little pick me up after such a long week!

Then I had mailed one of my best friends Taylor a letter!  I had finally found her address when I was cleaning out my room and she too has been going through a rough time and her response was,” eeeeeeps! You sent me a card! I love you!.... I just got it cause we had our mail held while we were gone.  My Dad still has his letter!”  Taylor and her family are extremely strong and I know they can get through anything, but sometimes cards are a nice reminder that there are better things ahead and that people are thinking of you!  <3

Now those were my pick me ups for the week, in terms of how my actual week has been it has been rough.  After crashing my car, starting a new IV protocol, and moving into a new house for school that isn’t ready I have been overly emotional.  I can’t seem to make my eyes stop crying and sometimes I feel like people judge me based on how emotional I get, but how can I not get emotional when I walk into a house that I am paying a ton of money for and it is not remotely finished.  There was no bed or desk in my room.  There were no couches or TV in the living room or table in the kitchen.  There were a ton of construction errors all through out the house like a whole in my wall in the bathroom because there was no doorstopper, a whole in my roommate’s bathtub; these are all things that should have already been fixed.  PLUS, the house was absolutely filthy, the carpets were brown. 

A normal person could have handled this, but not someone who is battling a chronic illness, trying to dose antibiotics properly, figure out her life, just crashed a car, and on top of all of that realized her best friend is leaving in a few days.  What is normalcy?   Will I ever get there again?  My mom is really hard on me about expressing my emotions and crying, but what happens if I hold it all in… Will I eventually explode?  Will I get to a point of giving up?  In my opinion it is better to express my emotions, I’d rather have my emotions in then out, but that is my opinion.  Paige can’t express emotions normally so our deep bond is a weird one considering I overly express emotions and she can’t express emotions properly.

Thank God my good friend Eric and his brother helped me move into my new house because without their help I don’t know how I would have handled things and I don’t know how my Mom and Paige would have been able to handle all of the lifting.  They are too kind; I am lucky to have them in my life.  Plus my good friend Kelsey came over for dinner to meet my mom since Kelsey lives in Harrisonburg and her husband Tyler changes my dressing and the two of them have been so instrumental in my life if they know it or not.  Although I am sick as hell I have met the most incredible people along the way.  It was nice to have Paige, Kelsey, John, and Eric all at the dinner table with my Mom for my first meal in my new house; it felt very special.  I love being surrounded by such a supportive group of people.  Plus, it was not a IV antibiotic day THANK THE LORD or I would have been more sluggish than normal, nauseous and cranky.  I still did not feel great, by the end of the day my friend Eric told me I had to sleep that my eyes were rolling around and I was faling asleep standing but still I am stubborn and I wanted to finish sorting my closet; eventually he won and I did fall asleep and I had 4 missed calls in that 1 hour that I did fall asleep!!!  I needed the sleep though I felt like shit no doubt about it.  My muscles hurt and I was having severe nerve pain, but I was still pushing through it!  

Not a great photo but you get the idea!

The first night in the new house was great with Paige; I wouldn’t have wanted to spend it any other way.  We did some yoga, went for a walk, had some frozen yogurt, chatted, and then said goodnight to each other.  Seeing Paige everyday reminds me that I can and will do this; I find strength in our friendship to persevere.

“There comes a time when you have to choose between turning the page and closing the book.  I am turning the page, over and over again until I beat this disease.”