Believe in tomorrow

http://www.cbn.com/tv/2736238685001

"Believe in tomorrow. For tomorrow holds a range of possibilities."

First Dose Tige Done!

I survived my first dose of tige last night, so that can only mean good things to come hopefully!  While I did survive my first dose of tige, I think I have been pushing my body too much because yesterday I got a vitamin C IV drip, I worked out, and got a lymphatic drainage massage.  My body can only handle so many new things at once, today I feel hung over and nauseous.  Luckily, I only saved a small amount of last minute shopping to do today so I should be able to grab a nap this afternoon. 

While on the phone with my Dad yesterday, I suddenly began to sob when I realized what I was doing for New Years Eve in comparison to last year.  Last year I spent New Years Eve in Los Angeles with Paige and it was the perfect night.  We got dressed up, ate dessert first, had a glass of wine, and just laughed!  Anything I do with that girl is a good laugh.  I just grew depressed thinking about how much I miss her and how this year my plan was to just go downtown with a very good friend to a bar.  Although I am excited to be doing something with a good friend, I know nothing will compare to what I did last year.  The sobbing that began on the phone with my Dad has now initiated a downward spiral in my mind because I realized how to people heal from such a significant wound, (Lyme disease and coinfections).  I can get better physically, but after being sick for a 1/3^rd of my life when I am only 21 is a hard emotional battle to overcome. 

Last year with Paige starting with our dessert!

I am sure it is a battle that I will overcome with time.

“She believed she could so she did.”

Happy Holidays!

End of Fall Semester 2013!

With the completion of my fall semester, many exciting things have happened.  For one, I finished the semester with a 3.4 GPA; although I was hoping for Dean’s list, which is a 3.5 GPA I am extremely pleased with pulling off a 3.4 GPA.  It is not easy trying to balance a 15 credit hour semester with being sick, but I would say I managed just find in the end. 

In addition, my best friend Taylor graduated from James Madison University and that was the first friend I physically watched graduate from college.  I have to admit it was a little sad especially considering how close Taylor and I are; luckily Taylor is staying for her Master’s at JMU.  I guess you can say that I am spoiled in that sense.  One thing that I have had to keep confronting this past semester that will only continue to grow worse is the fact that all of my friends are graduating next semester and I am not.  I am staying for an extra semester and I know a handful of people staying if that.  I am going to be devastated when all of my friends graduate and I am the only one left.

One new thing in my life to help with all of the change is that I got a puppy!  Two weeks ago right before the semester ended my parents told me that after much debate they finally had decided that they were going to get me a mini Labradoodle for Christmas.  He is currently 15 weeks and with every day he gets better and better with listening to directions.  He is a great companion.

As far as being sick goes, the last protocol was okay in the beginning until I got to the CoArtem.  The CoArtem always hits me hard and gives me the worst night sweats, which means my Babesia is still active and strong.  I still have a list of symptoms a mile long, but the doctor was optimistic at my appointment on Friday.  They were happy with my improvements and while I still have a ways to go, it is always nice when someone else is able to see the improvements in you.  I am still really struggling with neck/back pain, headaches, sleep, night sweats, chest pain, difficulty breathing, memory, word retrieval, rib pain, and REOCCURING EAR INFECTIONS!  The reoccurring ear infections in the right ear has got to be the most annoying symptom I have because I have had it since June and my ear is just so raw right now.  Sometimes wind can blow and irritate my ear to the point where I cry because of how sensitive my ear is.  Also, I didn’t follow my last protocol to a tee because I forgot to take the xylitol and I feel like that is pretty essential for the protocol. 

On Friday I test dosed Tigecycline and I tolerated it well; I did dose Zofran before and after for nausea.  While I did tolerate Tige in the office, something tells me this next protocol will kick my ass!   Luckily I am home on break and really my only job is to treat this disease and it is easier while at home because I don’t have any real stress other than what I put on myself.  This will be a great month for getting better and de-stressing! 

Since I have had some spare time I was fortunate enough to get together with some friends in DC who were all in town to go to the clinic.  One beautiful thing to come out of such a nasty disease are the friends that I have met along the way:

Anyways until next time: “Attitude is the difference between an ordeal and an adventure.”

Doing you.

How does one cope when only 21 and feels like everything around her was taken from?  The holidays are a hard time to continue to smile and keep my chin up when things feel like they are slipping out of my fingertips.  In just a few short days I will have completely another semester.  I can hardly believe it.  I continue to amaze myself and it does feel good to make strides and progress in everything that I do, but the holidays are nonetheless a difficult time.  Despite my illness, I manage to get great grades (well hopefully), score internships, and still be an active member of the community.  But, it is not enough if I don’t have my health.  The worst thing response a parent can get when they ask what you want for Christmas, is your health.

Going home for Christmas shakes up my routine every year and this year I have an entire month off.  I love going home do not get me wrong.  But, I am so used to living on my own and doing what I want, when I want.  Don’t get me wrong, my parents are pretty good about not babying me when I come back home, however I think I just associate my house with terrible memories.  High school was very rough because I was sick and did not know what was wrong; I think I have flashbacks when I am home.  As dramatic as this sounds, it is almost like PTSD, probably a lesser form.  

In addition, the holidays can be very stressful and as it is I am already someone who is under constant stress, so my body can only handle so much before my mind and body snaps.  I once was told, a coping strategy whether it be healthy or unhealthy is something your body adopts to help you survive in that moment and I know that seems very basic but if you ACTUALLY think about it, it is so true.  I have had some unhealthy coping styles before, but they have survived some purpose for me or I would not have kept it.  I am trying to be as proactive as possible this year because I know the effects I can have on others.  I can hurt people; I can hurt myself (emotionally).  It is not healthy for anyone. 

This year I will probably be on one of the most intense antibiotic regiments you can be on for Lyme on Christmas and there after, so I think in a way that will allow me to focus on my health.  I am usually burnt out after breaks because I feel like I have to fit so much into a small amount of time but this break I really want to focus on my health and myself.  It is not that I am being selfish, it is that I am taking care of myself; there is a fine difference and I hope others can see that as well. 

“Do your thing. Do it unapologetically.  Don’t be discouraged by criticism.  You probably already know what they’re going to say.  Pay no mind to the fear of failure.  It’s far more valuable than success.  Take ownership, take chances, and have fun.  And no matter what, don’t ever stop doing your thing.”  

Only 13 days

I can’t believe Thanksgiving is just two days away!  I feel like just days ago I was starting my fall semester at James Madison; but here I am spending Thanksgiving break sleeping an ungodly amount of hours, instead of wasting it studying my life away.  This semester, by far, has been the most challenging Lyme semester I have ever faced in my life.  I have faced the inner black holes of Lyme through and through and am still waiting to see the light.  Often times I wonder if the light is ever going to come.

Since my last update, the second round of that protocol was much harsher than the first round of that protocol for some reason.  I contribute that to temperature changes, more stress, not eating as much or as well as I needed to be, and getting attacked by numerous small infections.  So, it made all of my Babesia symptoms worse.  About half way through the protocol I completely switched to green smoothies and eating all clean with the exception of chicken once a day.  I saw dramatic improvements in my energy levels and overall coloring in my face.   I have been able sustain that since.

When I went to the doctors, last time I was given a completely different protocol it is only 13 days long with 15 days off. 

Days 1,2,3- artimissinin, septra ds, daraprim,

Days 1 &3- Mepron, Merropenom and Cipro by IV

Day 4- Flagyl and Diflucan

Day 5- off antibiotics

Day 6,7,8- 2 X daily Merropenom and Cipro by IV

Day 9,10 off

Day 11-13-- CoArtem  

Like I said, short, sweet and to the point.  Right now I am on day 5 and feel very high/spacey.  I feel like other people cannot connect with me and like I cannot connect with them.  I often feel like this but it is exasperated now.  I am sick of everyone; I am sick of no one understanding what it is like to be me or go through what I have to go through every damn day.  It is becoming exhausting to try to please other people; I hate putting on a show.  I am very thankful to have a couple of people that do listen and try to understand.  How do others deal with their emotions?  What have been people’s reactions to Daraprim?  Also how do people deal with herxing?  

This time I will actually keep everyone posted on how I am feeling throughout the protocol since it is only 13 days!  

“I have come to believe that caring for myself is not self indulgent.  Caring for myself is an act of survival.”  

Babesia attack!

Sorry it has been so long since my last blog post!  I do miss blogging, so I am going to try to give you the most thorough update on my life now that school is back in full swing, but it may be very brief.

Since September 20^th, 2013 I have been on an intense protocol of:

-IV Cipro in the morning for the first two weeks M,W,F

-IV Azithromycin at night for the first two weeks M, W, F

-Mepron 2 tsp twice daily for the first two weeks M, W, F

- Septra DS 1 tab twice daily for the first two weeks M, W, F

- Artemisinin 800mg twice daily for the first two weeks M, W, F

- Lactoferrin and Xylitol first 8 days of antibiotics

-Flagyl twice daily on the second week just Thursday and Friday

-BUT then CoArten twice daily on M,T, W of my third week

And I am finally on my 10 days off.  I am exhausted mentally, physically, emotionally.  Being at school has taken a tremendous toll on me and my parents in addition to others have suggested I take next semester off because it is almost unrealistic that I am at school from time to time.   Luckily I do not have to make a decision right now.

I went home the last weekend in September to go to the cardiologist, where I found out I have mitral valve prolapse.  This could be where I get increased anxiety, I met Mandy Hughes from the documentary Under Our Skin the last weekend of September and she looked amazing.  She is no longer on antibiotics and she is currently a nurse at Hopkins, meeting her may have saved my life.  She was able to point out all of my current symptoms just from looking at me, she could tell I twitch and was fidgety, my balance is off, my central nervous system was going crazy, my speech was delayed, and the list is endless.  She restored my hope.  I cannot reiterate enough that she looked amazing; here is a picture of us below:

Inspiration 

The hope only lasted so long when I began to truly regress cognitively, be in more physical pain, and barely be able to keep food down.  I had to fight with all of my will power for two hours after I took my antibiotics to ensure that my pills would be effective.  I remember calling a good friend of mine Wednesday night the second week of that protocol at 12:30ish sobbing asking her if it was okay if I didn’t take my oral antibiotics because I was going to throw up from the IV.  She comforted me until I began puking my guts out; I saw her that weekend at a PAL event Partners Against Lyme at George Mason University and she commented, as did everyone else on how much weight I had lost. 

Beautiful Lyme Ladies

My doctor was the keynote speaker at the event, so after I asked him to feel my neck because my ear was killing me and I was going to go to Urgent Care on Monday if he didn’t think it was too much of a concern, but he agreed to and as he pressed on my neck and hit this one spot he told me the nerves of my carotid artery were inflamed causing the ear pain.  I have had this ear infection like pain since June!!! It drives me crazy and as you can imagine cold, rainy weather doesn’t make it much better.  The good news is he saved me a trip to the doctors that I didn’t need and I met amazing people at this forum that were very similar to me. 

The protocol was vicious in general but especially with CoArtem; I did not react well to that by any means.  I had very vivid dreams, heightened anxiety, a hot burning skin rash and so much more.  As a whole I still have a lot of neurological problems such as dyslexic like issues, severe memory impairment, hand malfunctions, muscle aches, nerve pain in my back and head, headaches, chest pain, air hunger, nausea, chest pain, anxiety, just to name a few but I do know that it does get worse significantly worse before you get better. 

I went back to the doctors on Friday and I am sticking with the same protocol because my Babesia symptoms aren’t going away which is concerning.  The only difference was that on the same days I take Flagyl I am going to add Diflucan; oh the joys!  My body was treating 50 degree weather as if it were 25 degree weather; I can’t regulate my body temperature at all and my blood pressure has been super low at the doctor’s office it was 82/47.  I did IV magnesium while in the office and am going to start juicing or shall I say making as many green smoothies as I can to bring myself back to life!  In addition, I have been doing IV iron, which I think was the only way I made it through this protocol because it restored some of my fatigue; I hope I can do more of it. 

Now for the good things that have happened in my life, I was accepted for field placement for the spring of 2014.  It was a competitive process that at first I had to submit an essay then I had be chosen for an interview then I had to be accepted to the actual field placement after everyone has been interviewed and considered.  I also went to the tattoo shop that I want to have my tattoo done at and I got it stenciled on, it gave me something to look forward to.  I took a ton of photos!  Once again I am sorry for not writing in forever!

“Every test in our life makes us bitter or better, every problem comes to break us or make us.  The chose is ours whether we become victim or victor.”  

School has Officially Started

Wow it really has been a long time since I have blogged and I apologize for that!  I hate the saying when did life become so hectic, that you no longer have time for the things you enjoy.  I have a flexible school load, but I always find myself accepting other little projects because I am such a curious person.  I can’t stand being sick and having to watch from the sidelines.  Most weekends I have to watch from the sidelines, but when it comes to school that is one area I do not have to watch from the sideline because I can push myself; where as with alcohol I really can’t. 

Anyways, the first two weeks of that protocol were pretty viscous.  I had no appetite at all and most smells made me want to throw up, I only actually threw up a few times because I know how important it is to keep that medicine down.  I think that may be the hardest part battling the urge to throw up with knowing that the pills have to be absorbed first.  I also felt very “high” this protocol or shall I say spacey.  It is as though I am in my own world and no one is in there with me.  It is an isolating feeling; I continue to reach out to all of my Lymies but none of them are here with me experiencing college with me.  In addition, I am very misunderstood because of how emotional I can become at any given point during the day; my little Lyme spirochete and who knows where the coinfections are, are located in my Limbic system, in my brain.  I do become extremely angry or extremely upset and cry over little things that do not matter; sometimes I am actually crying for something that is bothering me and I just overreacting to something else.  I still have a lot of the same symptoms so I am not going to bore you with them, but the bruising seems to be getting worse, which is of a concern.  I also had a new symptom develop swallowing is becoming hard.  I don’t know what that means….  If someone such as touches me I bruise; I couldn’t handle physical therapy.  It was harming me not doing me good.

AND I STILL HAVE THE EAR INFECTION!!!! What is this!  It is not a joke; I guess I will hear what they have to say when I go back in a week and a half.  Now that I am on my off week, I am sleeping ridiculous amounts of sleep and feel terrible.  I am also catching a cold.  It makes me think that I need antibiotics all the time because I have been off antibiotics for 4 days and I am already catching something, how crazy is that!  The one thing that kills me is the one thing that I need; that sounds something a drug user would say.

Here is this weeks lab work: 

 

I don't like the neutrophils being so low and the EOS levels and the lymph levels for that matter! 

Some of the highlights that have taken place since my previous blog post:

My cousin/roommate turned 21, so me and the other 2 roommates got dressed up to the extent where we were wearing wigs and went to a restaurant that had giant fishbowl drinks so that she could celebrate being 21 the right way.  Although I did not drink, I did enjoy celebrating with her on her special birthday and dressing up!

The Roommates outside of the house

 Me and the Birthday girl

Next highlight was that a professor confronted me after class and asked if I wanted to be part of her lab team because I seemed as though I was prepared every day, very engaged, and motivated to be there.  I was completely flattered especially having to deal with everything I deal with.  I met with her today and I signed on to help out just as a 1 credit course this semester and hopefully more next semester, but I could really only devote 1 credit this semester.  She wants people to savor their time at James Madison and not rush around from place to place.  For example, she wants people to watch sunsets, go to Reddish Knob, hike at Old Rag, and notice more around them.  She says that freshman get to JMU and they are so excited to be here and then my middle of sophomore year it wears off and they go into an automatic mode where they stop noticing the little things and then when graduation comes they are crying wondering why they never did any of the things on the JMU bucket list or noticed the sunset from the balcony of their apartment.  Needless, to say I am excited for this! 

Lastly, I spoke to Linda.  There aren’t enough words to say how relieved I am just for that phone call.  It meant the world to me; she is at a dr. in Martha’s Vineyard that is finally giving her the answers she has needed for years and is making improvements.  I have tears rolling down my cheeks just thinking about Linda and her improvements that she is making there and just the fact that she is getting answers.  She needed this so badly, when she left I thought she was going to pass away.  I was afraid I was going to lose one of the most important people in my life, my Harrisonburg mom the one that understands me.  I honestly don’t know what I would have done. 

“The only limits in life are the ones you make.”

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.”