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.”