Challenge Accepted

I did it, challenge accepted.  I graduated college with an undergraduate degree in Psychology with a minor in Substance abuse prevention.  I can’t believe I did it even if it did take 4 and a half years.  I have accepted that everyone goes at their own pace and that is the beauty of life.  I honestly don’t know where to begin with how this past semester was for me, I guess I’ll start where I left off!

My family at graduation.

On the way to graduation.

My first day of kindergarten. It is crazy to think how much has occured in those 17 years. I don't think I would change any of it because the combination of experiences compiled togeter have created the strong woman I am today.

The gallbladder surgery went surprisingly well when I look back and think about it.  I didn’t have to spend the night in the hospital or anything.  The only problem I did have was waking up from the anesthesia, I was extremely nauseous and wanted to see my Mom but they said I had to walk before I was allowed to see her.  Eventually I stopped gagging from the anesthesia and moved from the hospital bed into a chair so that I could see my Mom.  When the doctor came in after the surgery to check on me he said my gallbladder definitely needed to come out.  It was very inflammed, that was reassuring to hear that I made the right decision in having it out.  The nurses also told me to use heat for my shoulders and to start walking as soon as possible to remove the air from my stomache.  Also, I started school ten days later so I really did not have much time to “relax”.  I needed to get up and get going.  My parents had my Aunt and Uncle’s wedding to attend the next day so my best friend came to babysit me since I was unable to be left alone.  Let’s just say I was grateful to have her stay with me!  She had to do everything for me… by everything I mean, walk me to the bathroom, cook me food, give me pain meds, and added bonus was she kept me laughing the whole time she was with me!  I must admit I am blessed when it comes to my family and friends.

When I went back to school, I was taking 16 credits including an internship at ASAP also known as Alcohol Safety Action Program.  I had to complete 150 hours during the semester.  In addition to the internship, I was taking biology, which for those that know me well know that I am not good at science, I was a teacher’s assistant for an undergraduate cognitive psychology course, and I continued my positive psychology research.  Needless to say I don’t think I know what it is like to not be busy.  I think I thrive on being busy and enjoy the high I get from always running around as if my head was chopped off.  When I sit still my head has time to actually process how my body feels and I lose it.  This is the reason I hate movies, hate watching TV, and any activity where I have to sit still or can’t multitask.

The semester started out great!  I was super busy, but I had a great roommate who helped with my puppy and cooked dinner for me most nights.  I loved living with just one other person vs. three other people; it was easier to communicate with one person and the townhouse was quiet which was great for my hyper sound sensitivity.  I had quite a few ear infections in September but I kept chugging along like I always do because I am a warrior.  The entire month of September I had been planning a substance abuse recovery panel with 4 panelists as a passport event for the freshman to attend as part of their health class.  I was the moderator for the event and it went very smoothly!  There was a high attendance rate of over 125 students and I think that the event increased students awareness for substance abuse in college. 

That night after I had finished the event successfully, my body gave out on me.  I spiked a very high fever and the next day went to the hospital.  They conducted 3 spinal taps because they missed the first two times and had to send me to radiology after the failed attempts.  The doctors said there was nothing wrong and everything was normal even with extremely elevated sed rate and WBC.  They discharged me with fever of unknown origin.  I even had a fever on the day of discharge, which seems kind of funny to me as to why they would discharge me if I still had a low grade fever of 99.8 at 1pm in the afternoon. 

Then for the next 3 weeks I suffered from fevers almost daily if I did not take Tylenol in addition to extreme body pain.  It hurt for someone to touch my body especially my back and legs.  I followed up with my primary care doctor in Harrisonburg and he said you have had every test done in the book what do you want me to do?  The nurse was laughing at me because I was crying in the office from the amount of pain I was in.  The doctor ended up doing a strep test because he said that was the only test I hadn’t had done yet and of course it was negative, leaving me more hopeless then ever.

That weekend I was going to visit my sister at Notre Dame to attend my first Notre Dame football game and to be her Naval ball date. Excited does not even justify the way I felt, leading up to this weekend.  I talked nonstop about going to Notre Dame, seeing my sister, and attending a football game.  I was even missing a day of school in order to have a tour of the field since my sister works for NBC.  Luckily my Dad, my Aunt, my Uncle and I all made it to South Bend, Indiana in time for the private tour on Friday given by my sister.  It was awesome!  Then I went to the Naval ball that night with my sister, but I felt my body beginning to fail on me.  I was fading in and out all evening and my sister could tell.  She offered to leave the entire night, but I didn’t want to.  The next day was the football game against UNC and it was much colder than I expected so we all headed to the mall to get sweatshirts so we wouldn’t freeze when we tailgated.  I was more achey than I had ever felt and my legs were failing me miserably.  I asked my Dad to feel my forehead as I leaned up against him for support.  I didn’t really need my Dad to verify that I was burning up, I knew it before he confirmed it.  He felt my forehead, grabbed my arms to hold me up, then looked into my eyes, and said you are not well, we need to get you to the hospital.  To this day I don’t know what would have happened if I had gone to the football game.  I sobbed the whole way to the hospital, I wanted to go to that football game more than anything and of course I was sick.  Once I had been seen by the doctor he ordered a chest X-ray, said it was clear, and wanted to run more tests but my Dad and I called my Lyme doctor’s office to talk to the doctor on call.  I did not want to be hospitalized in small town Indiana in a hospital that did not know much about lyme disease not to mention I was far from my Mom.  Luckily the Physician assistant on call called back very quickly and talked to the doctor who was seeing me.  The doctor was very receptive to everything she was saying; she thought it was a herx or an infection.  The doctor wrote me valium, Tylenol with hydrocodone, and ibuprofen 800mg; he wrote me a schedule for taking all of the medications based on the Physician assistant’s guidance. 

Just showing off on the Notre Dame football field!

My sister and I at the Naval Ball

I somehow survived another night in Indiana and a 10 hour drive back to Harrisonburg, Virginia because I thought I was going to magically get better and go back to class on Monday.  Boy, was I wrong.  My Mom had drive down and get me because I literally lost the ability to walk.  My roommate had to carry me down to the car from my room because my Mom wanted to take me to the hospital at home in Baltimore, Maryland.  I think that was the longest 3 hour drive of my life.  I felt as though I fading in and out of consciousness waiting to arrive at the hospital and I somehow made it to Greater Baltimore Medical Center.  On Monday, October 13^th 2014 I was admitted to the Intensive Care Unit  for being septic secondary to pneumonia.  In the ICU I was not given any pain meds, anxiety meds, or sleep meds due to my low blood pressure (69/49) and high fever.  Every time I would scream out in pain the nurse would tell me that if they give me medication it could kill me and she would ask me if I want to live.  I had to undergo another spinal tap, it was deemed tramatic because they claimed I moved.  I don’t know how they think that was possible when someone was literally holding me in a C-shaped position on my side.  The concerning part is there were RBC and proteins in the sample and it was “slightly bloody” in appearance and yet I was told that it was normal!!!  I didn’t find all of this out until I received the report after discharge.  What the doctors did find was a Mycoplasma infection in my right upper lobe and a Chlamydia Pneamoniae infection.  Double whammy.

My spirometer which to is used to prevent my lungs from collapsing. Not my most flattering photo.

I only spent one night in the ICU, but 5 days in the hospital in total.  Then I missed an additional week of school because I was so week!  As you can imagine, catching up from missing two and a half weeks of college is nearly impossible.  It is not the same as missing two and a half weeks of high school especially when you plan on graduating in December.  Most of my professors were understanding and allowed me to make up my work at my own pace as long as I finished my work by December 12^th since my graduation date was December 13^th.  However, there is always the one professor that has to be difficult and this time was no different then any other time.  He insisted everything get done on his time and on deadlines that at times seemed unrealistic, but I proved that they were realistic because I got the assignments done and made up the tests that I had missed.  I ended up with a B+ in his class for the semester and a 3.465 for the semester.  Not too shabby.

Most importantly though I am alive.  All too often, we take this simple gift for granted; we assume that it is a right to live until old age.  Losing my right to walk, my willpower to live at times, and going through unbareable pain has taught me to truly cherish every day.  A test is just a test, in five years will that test really matter; am I going to remember failing?  I have began making an effort to tell people how much they mean to me and how they impact my life because what if I never have the chance to again.  I am realizing how precious life is and how short it can be.  As strange as this may seem, this life changing incident has helped me lose some of my insecurities that I had about my life.  I am realizing I don’t have time to put up with unhappiness, fake friendships, or petty fights. 

My roommates from last year and I- tailgating homecoming weekend.

My Dad and I on top of Reddish Knob.  Feeling alive after nearly dying.

"Where there is a will, there is a way. Fight for what you believe in." I guess there was a reason I felt compelled to write this on the top of Reddish Knob with my Dad.  Never stop fighting, especially for what you believe in.  

“Whatever you want to do, do it.  There’s only so many tomorrows.”

Isn't it ironic?

Although I hate birthdays, I did have an enjoyable day on May 31^st, which was my 22^nd birthday.  The day began with my roommate Meghan and I going on a sunrise hike somewhere off of Skyline drive; it was spontaneous and fun.  The hike didn’t go as planned, probably because of our lack of planning but I think that comes along with turning 22.  We had more fun trying to find a hiking path and trying to see the sunrise, then actually seeing the quote on quote perfect sunrise.  After my birthday hike, I was fortunate enough to enjoy breakfast at one of my favorite local diners that has mostly organic food including the coffee!  I, of course, indulged because it was my birthday and I was with one of my closest friends!  Following breakfast, I had a bit of down time, which wasn’t really even down time because my phone was blowing up with people wanting to wish me a Happy Birthday.  After talking to my sister on the phone, who was in California at the time, I headed to Crosskeys Vineyard to truly embrace being 22 with two of my roommates!  We did a wine tasting and then did an additional glass of wine; I must say I was truly “feeling” 22 after that.  You would probably expect the day to be over by now, but nope I decided to go downtown and have pizza at a local pizza shop that opened with my two roommates and then the girl that got me through the year with the PICC line!  I couldn’t have been more excited to that she attended the dinner; she would change my PICC line dressing weekly and sometimes more than that if I had sweat too much or had gotten it wet.  She was a blessing.  The day as a whole was picture perfect with people that have helped me bridge the gap from 21 to 22.

Meghan and I on our sunrise hike

I somehow found this ironic that I saw this deer on my 22nd birthday and I was able to find it magestical and peaceful even though this animal has caused me such pain and devestation.  Isn't it ironic?  Life can just be so strange sometimes.

Birthday dinner with the girls

In terms of how things are going since my last blog post, I would say okay.  My summer has had its ups and its downs, but isn’t that life!  Someone broke into my house last month, but luckily my lease was up at the end of July so I just moved into a different townhouse in a different development.  So far I really like my new roommate.  He has a dog named Angel, who really gets a long well with my dog Kona, which is a huge plus for me!  They run in circles all day and tire each other out; it’s great!

As far as health goes, I was doing quite well in the beginning of the summer besides my gallbladder issues, which are a setback, but in terms of Lyme I felt like I was making progress!  I ended up getting a HIDA scan and an ultrasound of my abdomen to check out the gallbladder; the results lead the radiologist to believe that I have biliary dyskensia.  Pretty much all biliary dyskensia is, is a big fancy word to say that my gallbladder doesn’t contract when I eat fatty foods.  It sounds like it would be great because then I would avoid the fatty foods and everything would be swell, but it isn’t that simple.  For my stomach, nuts are considered fatty foods at this point.  The discomfort that many foods are giving me isn’t worth it, I ended up going to see the surgeon and he says that surgery has a 70-75% chance of taking my symptoms away.  My symptoms are pain after eating, abdominal discomfort, severe bloating, gas, shoulder pain, nausea, etc.  I would say those are pretty high odds.  This surgeon wants to do the surgery robotically, which I am a bit skeptical of because there is more pain initially after the surgery.  I guess we will see though, the surgery is scheduled for August 14^th. 

As for my current protocol, it hasn’t changed since I got my PICC out; the only thing that has changed is that we added another day of Diflucan in my protocol.  Oh, I am also taking Activated Charcoal to aid in detoxing as recommended by the Biotoxins doctor that I have been seeing for a few months now.  I just started taking that, so as of now I have nothing to report on if I think it is working or not.  I did try the Protandim and I did not think that helped me.  It was worth a shot, I read so many things on the Internet and on support group websites that I end up trying these supplements if people say it helps them and if/when it doesn’t help me, I feel such a personal defeat.  I know it is not the end of the world, there is always another pill, another doctor.  But more importantly there is another day; I have to remember I am only 22.

“There are years that ask questions, and years that answer.”

Looking at a shadow

Once again I do apologize for the large time gap in my posts, but I grew so busy with the end of the school year that I wasn’t able to focus on my blog and that isn’t fair to my readers. 

Anyways, I will finish where I left of and then give you an update on my life!  After I arrived in Baltimore after having sat on the plane ride WITH MY MOTHER thinking that I possibly had gonorrhea; my mom had a voicemail on her phone from my LLMD that my blood culture had been contaminated possibly.  I was extremely aggravated at this point because the next blood culture would take 24hrs, then 48 hrs, and then 72 hrs for further results.  Regardless of what my blood culture said it was decided I needed to get the PICC out so I had decided I would get the PICC out the next day at the clinic and I would just do the cultures there since we know and trust the staff.  

Pre-PICC pull

My PICC!

Had to post this!

Could you imagine what it was like waiting for those results?  I had to wait around on my Spring Break thinking that I may have gonorrhea.  The worst part was my mom thought I had gonorrhea too!!!  She would ask me repetitively and she would bring it up when we wouldn’t even be talking about how I was feeling.  We could be talking about the weather and then all of the sudden she would be like “I promise I won’t get mad if you slept with a random stranger, but did you?”  Then to top it off the blood culture took forever to come back because it was hard to determine the specific species and it took about 5 days!  Luckily they started me on Omnicef and Cipro because it was determined that the bacteria was gram negative pretty early on but they still wanted to verify the species.  The bacteria was pseudomonas putida, which is an opportunistic infection and because I had the PICC line in my arm I was considered an opportunity I guess.  I did two weeks of oral antibiotics and those two weeks were actually kind of rough surprisingly because I hadn’t taken those orals in awhile.  My stomach wasn’t used to it and because I had an active infection in my blood, I definitely felt the die off of the bacteria. 

  Shit happens and life goes on, that is what I have learned.  Mentally that was a set back for me, I have a tendency to think that bad things only happen to me.  I am beginning to realize that they happen to everyone, but usually you only hear everyone else’s highlights not their lows.  I did finish the semester with a 3.63, qualifying me to make the University’s deans list, which was a very satisfying feeling because I do work very hard for my grades.  I also presented two of my Psychology research pieces at conferences, one being the Virginia Psychology Association in Norfolk.  

Me presenting my poster at the Virginia Psychology Association

When I look back I feel like I am accomplishing a lot, but when I live day to day I don’t feel fulfilled.  I feel like I am missing something and I don’t feel “better”.  I guess I keep trying all of these supplements or more naturalistic approaches and I haven’t seen the results I want, which also contributes to my feelings of dissatisfaction.  I have begun dry needling for my neck pain/back pain/headaches; I have seen some relief sometimes and I guess that is better than no relief.  I also tried protandim, which is a supplement but I didn’t see any relief with that.  I have been reading a lot about the cannabis oil and I am tempted to ask my LLMD about it at my appointment next week.  I think they are studying its effects on killing Lyme and helping with symptom relief.  Also, I discovered that I have biotoxins, whatever that means.  I went to a biotoxin illness doctor last week and I failed the vision test so badly; I got blood work done to try and target which systems the biotoxins are effecting like my cardiovascular system, my endocrine system, etc.  The doctor seemed promising.

Another weird reality in my life is that many of my friends have graduated this past year and I still have another semester, which I am fine with; it is just weird and causing me to reflect.  I have recently met another student at my University, who also suffers from Lyme disease and many coinfections; she is a spitting image of who I was a year ago.  She was over last night and when I opened the door I felt like I was opening the door to a shadow that was me a year ago as creepy as that sounds.  She has delayed speech, lost so much weight, one side of her face droops a little bit, she goes on tangents, and she thinks just like me!  She is at a time in her life where she can’t be happy for other people because she is struggling so much herself; she is extremely bitter.  I could relate, a normal person would think we were crazy; but I understood every single thing she said.  It made me realize how far I have come in a year.  I may have a ways to go, but it is nice to realize where I was at one time.  

Tomorrow is my birthday and I absolutely hate birthdays because for some reason I think of it as celebrating one more year I skated past death.  I think of me surviving one more year of the grim reaper reaching his hand out, trying to grab me, and me somehow surviving yet another year but I don’t know how I did it this year.  When I reflect back, I literally had stopped taking my medication for 5 days last July, I was skin and bones in September, I had sepsis in January, I had another bacteria in my blood in March, and yet I am still here!  HOW is all I want to know?!  I guess that is the definition of resilience.  There were days I swear I saw death especially last July, but I did it.  One more year down.  22 tomorrow. 

“I want to meet myself from someone else’s point of view.”

Vacations-Never Again

Let’s me just begin to say, I am sorry for this long overdue blog post.  I know people enjoy reading my blog posts and I do apologize for not getting this post out sooner.  My family and I made it to Florida on Saturday because we stopped Friday night somewhere in South Carolina, I believe if memory serves me correctly.  Almost every hotel was booked when we pulled off the exit around 10:30/11 because all of the spring breakers were crashing for the night.  We didn’t care where we stayed all we needed was somewhere to crash too, however, we weren’t willing to risk our safety for a night’s stay.  After pulling up to 3 or 4 hotels and my Dad hopping out of the car, running in then running back out into the car, only to tell us that the hotel was full like the rest, we finally found a hotel.  We stayed in a pretty crappy room for $119 dollars; my Dad is a man of reason and he tried to bargain his way down.  We have AAA, but these people know that this is their season and bottom line is they could charge whatever they would like and we would pay because everywhere was booked!  She essentially said you can pay or keep driving.  How nice.

We paid and enjoyed our night’s stay.  The rest of the drive wasn’t bad except for the fact by the end I think we were all ancy and wanted to get there to enjoy the warmth especially my poor sister.  The Indiana winter ate away at her; it’s lonely there and it doesn’t help that her roommate situation isn’t ideal.  She is a night owl and has a lot of family issues.  She doesn’t know how to communicate appropriately and things are worse since my sister told her they weren’t living together next year.  Needless to say, I think my sister needed the sun more than any of us did.  By the time we got to my grandparents house, I threw on my bathing suit and darted towards the pool.  I didn’t waste any time, I felt bad not visiting with my grandparents long especially since they weren’t staying more than a night with us but I NEEDED the pool and a tan.  I don’t think I have ever appreciated 4 hours more in my life and that isn’t an exaggeration.  The sun was warm, but not island hot where you feel uncomfortable; I was surrounded by all of the people I love and I was away from school.  After spending the day at the pool, I went home to nap and that is when I received the dreaded phone call.

The microbiologist had left me a message saying he needed me to call him as soon as possible.  It was a Saturday, if a microbiologist tells you to call them on a Saturday as soon as possible that isn’t a good sign.  I stepped outside the house because I didn’t want to make a seen and I called, only to have my stomach drop the lowest it has gone in awhile.  He told me he had found an unusual amount of bacteria in my blood, which would explain why I am not feeling better.  I took a deep breath, not crying, I was too numb for tears.  How could this happen on my vacation?  I never go away.  I will never go away again because clearly I am not meant to go away.  Bad things happen when I go away.  All I wanted to do was enjoy a few days with my family.  In my head the rationale I was experiencing was that I had just tasted a bit of heaven and it was just snatched out from under me again.  I asked a few more questions like what bacteria was it?, should I go to the hospital to get my line out?, could he call my dr?, etc.   He didn’t have any answers at this stage in the game.  He said let me identify the bacteria which should be by tomorrow then we can move from there.  I was freaking out, what am I supposed to do in Florida knowing that?  I don’t even have a doctor there.  I don’t know where the hospital is. 

I calmly went back in side and I asked if I could speak to my Dad before we ate dinner in the other room.  I explained the entire situation to my Dad.  He asked me if I needed to leave Florida.  He said we could go home.  I thought I needed to fly home but my parents had a point, with the information we knew at that point what were they going to do for me at home.  I couldn’t do anything at home differently than I could in Florida until we at least had different information.  I said okay fine I understand.  I tried to enjoy the rest of the night, but how could you with information like that.  I kept thinking I had a fever too, maybe out of paranoia but still! 

The whole time I was in Florida I laid out in the sun and I slept entirely too much, an unhealthy amount of time.  I would be concerned for the average person had they slept as much as I did.  Skip a few days and it is Tuesday morning, my Mom is waking me up telling me we are flying home.  She wants me to get my line pulled out and I wanted to too.  No one should have bacteria in their blood, which is by definition another round of Sepsis!  On Sunday the bacteria still hadn’t been able to be identified and same with on Monday, which was very aggravating, but they thought gram negative.  Scary.  While in the airport waiting to board the plane, my doctor called my Mom’s cell phone with an update on the blood culture FINALLY.  My doctor told my Mom that the blood culture came back as cocci bacteria, for those of you that are reading this and don’t know what cocci bacteria are, it is usually gonorrhea.  It can be two other types of bacteria, but in most cases it is gonorrhea; however, I knew that it wasn’t gonorrhea, but convincing my doctor and Mom this while in the airport was quite the task.  My doctor straight up asked me if I was having sex currently and if I was at the risk for STD’s because then this would be a concern.  She said as my healthcare provider she needs to know especially considering I am on IV medication, which I completely understand but I wasn’t lying!  Then I asked if I had gonorrhea wouldn’t they have caught it when I had sepsis in January and was hospitalized; they answer was yes.  Plus I wasn’t sure if gonorrhea was one of those STD’s that you could get from a toilet seat and have no idea or if it had to be sex.  The worst part wasn’t my mother’s reaction actually; the worst part was I couldn’t really ask questions because I was in the airport.  There were people sitting all around me and I couldn’t ask direct questions; I would say “it”, “this”, “contracted”, etc.  And I had to sit on a plane with this news. 

More to come soon be patient.

“Who I am and what I am capable of doing has always managed to surprise me.”

Doctor's Visit 3/7/14

After I had my last class of the day Thursday evening, which lets out at 6:15, I hurried home to once again finish packing!  By this time I had found out that I had received a 93% on my Cognitive Psych test and couldn’t be happier.  I had literally screamed with excitement when I had received the email from my professor, what a great way to start my Spring break.  But, I still had to pack, which for the average person shouldn’t take a super long time; however when you are packing IV tubing, dressing change kits, heparin, saline, lactated ringers, 10 days worth of medication, and then clothes, it takes a long time.  I have to triple check every bag because I can’t buy heparin or a dressing change kit at the local convenience store in Florida.  Needless to say, traveling is very stressful for me, but by the time my Dad had come to pick me up at around 8pm I was ready to go.

After he questioned if I needed everything that I had packed, we loaded the car and hit the road for the three-hour drive home.  In the car my Dad told me some very exciting news, I found out that I was going to have my blood looked at by a microbiologist we know that owns a lab; he was going to be looking to see if there was still Lyme bacteria, any other bacteria, or just to see if there was anything else of concern.  My Dad had gone to talk to him on Wednesday because I had been off of Tigecycline for two weeks at that point and was not seeing the gains that I should have been seeing.  I still had severe neck/back pain, headaches, cognitive issues, and I was feeling very discouraged as were my parents.  My Dad informed me that before my Lyme’s doctor appointment we were going to stop by this man’s lab and have my blood drawn for him to look at.  It was very generous of him to agree to. 

We made it home before my sister got home from the airport, so I decided to wait up for it; I was too excited to see her!  Plus I knew that I was getting up super early in the morning to head to DC for the doctor, then after that my Dad and I were going to meet my Mom and sister somewhere off of 95 for them to hop in our vehicle for the road trip!  By the time Payton got home from the airport it was late, almost midnight, and she went right to bed.  She didn’t want to stay up and chat; I guess that is what road trips are for, at any rate it was nice to just see her.  I have been talking to her a lot but nothing makes up for seeing someone.

I didn’t sleep well, Thursday night even though I was exhausted; my guess is it was my nerves talking.  I was very anxious for my appointment with my Lyme doctor since I haven’t been feeling well.  After my Dad finished packing the car, he and I began the drive to the microbiologist’s lab to have my blood drawn.  I am very grateful that he was able to draw my blood because he also sat down and talked with my Dad and I for a solid twenty minutes about my situation.  He shared his opinions on long term antibiotics, which many people feel strongly against; a friend of his, who is a Lyme doctor, says if you do not respond to antibiotics within three months then you won’t respond at all.  He also said that Tigecycline kills everything in your body, so that it would be hard for many other bacteria to survive in my system at this point.  He thought that I need to let my system heal at this point and eat foods with lots of fiber such as swiss chard to naturally detox my system.  He then drew my blood from the arm that doesn’t have the picc line.  He said he would send the results of my blood test to my Lyme specialist and that it usually takes 24 hours, then another 48, and a final report is created at 72 hours.

After seeing him I sobbed hysterically, while being so grateful for him being willing to help me; I felt so defeated at the same time, talk about not knowing what to feel.  The rest of the car ride to D.C. I whimpered just not knowing what to feel, but feeling disappointed, feeling like my months of IV treatment were a waste.  Most people can’t imagine the frustration I feel when I am constantly asked when are you going to be better?, is Lyme disease curable?, how come I had Lyme disease and I was better in two weeks?,  how many more weeks of antibiotics do you have?.  I know many of my friends are only trying to help and usually they are doing the best of their abilities.  That doesn’t change the fact that sometimes I wish I could teach a class on the art of being a better friend to a chronically ill individual.  There are a lot of do’s and don’t that people should be aware of.  Here are two blog posts from two different bloggers that I think are useful in helping to describe how a Lyme patients feels and what they wish others knew about them:

http://lymelessandlovely.blogspot.com/2014/01/top-10-things-to-know-when-someone-in.html

http://todayifeelexceptionally.blogspot.com/2014/01/deceitful.html

 By the time I arrived on M street in D.C., I was exhausted and a little bit car sick.  I hate my Dad’s driving in D.C., it is very stop and go; I bet a person could end up with whip lash from that kind of driving.  After we parked in the parking garage, took the elevator to the 2^nd floor, and waited briefly in the waiting room, I was greeted by the new infusion nurse, Riley, who I had been conversing with in my patient portal for the past few weeks.  I must confess she was much older than I had been expecting; I had painted this whole picture in my head of this lady who was about 28 maybe.  Let’s say Riley was at least twenty years older than that, however she was very nice.  After Riley had taken my blood pressure lying down, sitting, and standing, and had taken my temperature, I was hoping I would be able to get a magnesium IV like I usually did.  She told me she had to ask Tara before she could even think to set anything up; I should have guessed that.  Of course my magnesium level this month was a 2.1 and the cut off for being able to have a magnesium IV was a 2.0 so I was unable to have a magnesium IV; instead I was offered a Meyer’s cocktail.  A Meyer’s cocktail consists of magnesium, B vitamins and vitamin C; it has many benefits and in hindsight is probably better for me than the magnesium when I look at the all around benefits. 

Meyer's cocktail

My doctor finally came in after I had decided to have my Meyer’s cocktail to discuss my symptoms and discuss how I had been since my last visit, which had been quite some time ago.  I hadn’t been to D.C. since before my sepsis infection in January and I had also completed another round of Tigecycline, plus had 2 and a half weeks off of antibiotics to detox the Tigecycline to see how my body would respond to being off of antibiotics.  Needless to say it had been some time since I had sat face to face and spoke to the doctor about my long list of symptoms.  As soon as we began speaking I began crying, I couldn’t hold it in.  I had too many concerns that I felt weren’t getting better for having completed as much intravenous antibiotic therapy as I had; my line was placed May 8^th.  Let me remind you that, I had a previous line that I did 5 months of straight intravenous antibiotic therapy with, so I have had my fair share of torture!  Okay maybe torture is an exaggeration, BUT long-term antibiotic treatment is not an exaggeration for me. 

I voiced my thoughts about my high ferritin levels, severe back/neck nerve pain, constant cracking of my hips, knee pain, inability to process material, how I misspell everything, how I say the wrong word in social context, headaches/migraines, not sleeping well, feelings of being overwhelmingly hot, poor memory, deep hopelessness, anxiety, and dizziness—blackouts.  I told the doctor that I felt like after 2 weeks my body began to crave antibiotics; I feared that I wasn't going to be able to ever go a long time without antibiotics.  When I say I craved antibiotics, I mean that my symptoms began to worsen, just for the record.  After I was finished my show, I was told I was too toxic to go back on antibiotics and I needed another 2-3 weeks off.  The doctors told me that they couldn’t keep hitting me with antibiotics if I had too much inflammation and no way too detox; the inflammation was evident by my high ferritin levels and high CRP. 

I asked for more ways to detox, actually I begged for different ways to detox because clearly the ways that I was detoxing were not working!  I asked if I had the choice between getting a massage, going to physical therapy or getting acupuncture done, which should I do, I was told without hesitation to go with acupuncture.  I must state I was pretty shocked because I would have thought massage, but really massages stir up everything and can actually do more damage in the long run.  If you are going to get a massage though I was told to get a lymphatic drainage, never a deep tissue.  Then, I was told to juice, which I already do because that is a great way to provide nutrients to the body.  I was also told to dapple in trying pinella, burbur, or parsley; I was told some patients have great success with these products while other patients have absolutely no success.  You can find these products at www.nutramedix.com

I was told my next protocol would begin in 2-3 weeks as I had said much to my disappointment.  It would be as follows:  

First week:

MWF: Omnicef 300mg (2) twice daily

           Rifabutin 150mg      twice daily

           Minocin   100mg     twice daily

Fri &Sat  Flagyl 500mg twice daily 

               Diflucan 100mg (2) once daily

Then second week 

MTW:Omnicef 300mg (2) twice daily

         Rifabutin 150mg      twice daily

         Cipro       500mg    twice daily

I was also given Tramadol 100mg ER to take as needed for pain, then for sleep I was given a script to try Remeron 15mg (2) at bedtime, or Restoril 15mg (1-2) & Atarax 25mg at bedtime and I was also told to try oil of oregano.  As you can imagine, lots to take in!  After my Meyer’s cocktail was finished, we were told that I would go through this antibiotic cycle 2-3 times then return and I guess that was that!  My Dad and I drove to meet my Mom and sister in Chevy Chase which was relatively close to my doctors but took forever to get to because of traffic.  By 3 the Erlemeier family road trip to Florida was beginning, but so was the 95 traffic! 

  

"Patience is not the ability to wait, but the ability to keep a good attitude while you wait."  

Week before Spring Break

College students, myself included, dread the week before spring break because all we see are dead lines with schoolwork.  This year was no different especially with four snow days thus far in the spring semester.  I had two snow days the week before spring break, which would seem picture perfect any other week.  This particularly week I had more deadlines than finals weeks, okay that was an exaggeration but you get the point.  I had two tests, a paper with an ambiguous topic, two phone calls, I had to run research participants, I had to drop off dog food for Kona, and I had to pack for spring break!  Usually I have a four-day week (no Fridays) but this week due to the snow I only had a two-day week, which left just Wednesday and Thursday.  I was going home Thursday night because I had my Lyme specialist on Friday at noon in DC; it made more sense for me to drive home, then drive to the doctors and then from there I was going to just go to Florida via 95.  Plus, my sister was flying in on Thursday night from Notre Dame and any added time to see my sister was a huge bonus because we never get to see each other anymore, but I must admit we are talking more on the phone.  In high school my sister and I were extremely close, I would drive her to school in the mornings when I got my license, but then when I went to Elon for my freshman year of college our relationship fell apart.  When we did speak, our conversations were surface based for all practical purposes they contained no meaning.  Now I feel like we are rebuilding our relationship, piece by piece; people weren't kidding when they said Rome wasn't built in a day, that is how I feel with our relationship.  

I completely wasted my Monday away; I couldn't even tell you what I did.  I think I slept most of the day and cleaned my room.  I was exhausted and my body ached; plus I felt very frazzled for some reason, perhaps because I had numerous deadlines this week and I had a snow day, which meant I was trapped in my house with my 3 other roommates.  Granted I love my roommates to death, but I have to get out every day.  I hate being stuck inside and there was the dreaded possibility that there would be another snow day the next day too!  If there was another snow day, that would mean there would be no Cognitive Psych review in class and we would be missing an important lecture before the test; I know she would put the information online, but it is not the same as an in class lecture.  To my dismay, there was another snow day, my roommates were ecstatic, all I saw was work piling up in my head and my throat was beginning to tighten when I received a text message from one of my roommates about free pancake day at Ihop.  I decided I had to get out of the house to be able to clear my head, then come back and begin my to-do list.  However, the day did not go as I had planned. 

By Tuesday night I realized I was not prepared at all for this little vacation to Florida or for any of my upcoming work due Thursday!  The most successful part of my day was going out to brunch with my roommates and friends to eat Ihop pancakes for St. Judes Hospital.  The place was packed, but completely worth it in my opinion.  I even saw my friend Brie there, which I was shocked that I was able to recognize anyone amongst the crowds of people.  I must admit I did enjoy my omelet and my stack of pancakes, but what I did not enjoy was the time I wasted waiting to be seated (over an hour) and then the time I wasted waiting for my food.

It does look kind of worth it, doesn't it?  Not the gluten part though :( !

My anxiety was growing rapidly after I returned home from Ihop and realized the time, but one thing that does make me smile when I am anxious about my to-do list or when I don’t feel well, is my family group chat on the iPhone.  Thank goodness my Dad got an Iphone or else he would be hating life right now with the amount of texts we send in the group chat now.  I do give my Mom props as she always knows how to make my sister and I laugh when we need it.  Here are two photos that I received during the week before Spring break; not only did I get a good chuckle, but my roommates did too!

Who wouldn't smile at Teddy (my dog from home) laying in my Dad's half of the bed ?

Clearly placed by my Mom

Teddy my dog from home

Come Wednesday I did not feel well at all.  I hadn’t been sleeping well, my muscles were contracting and I had nerve pain in my back/neck (pins and needles).  Plus recently I have been having pain when I breathe in; I feel the pain on the right side of my ribs and then I also feel pressure on my sternum.  Not that any time is the ideal time not to feel well, but this certainly was not the ideal time.  I began to panic and cry, when my body regresses to previous states before antibiotics I begin to feel like all of my cycles of antibiotics were worthless.  I got into this vicious thought process and then before I knew it, I had wasted a few hours; wasting a few hours then made me more anxious because I hadn’t even had time to study for my Cognitive Psych test, do laundry, or further write my paper on “What made me who I am”?  What makes me normal/abnormal?.  I quickly realized I had to get the ball rolling if I wanted to do well on my paper and my test; I threw a load of laundry in and started studying for my test because the paper was due Friday night by 9pm.  I knew that I didn’t want to take the paper home with me when I left on Thursday, but if worse came to worse I would do that because I needed to do well on my Cognitive Psych test. 

The worst thing a teacher can do is psych you out and tell you that in the past this is the test most people fail, this is precisely what my teacher did for my Cognitive Psych test.  With that being said, I did not allow that to affect my mentality too much; I still studied like I normally would have.  I had music on in the background and chewed my Orbit flavored mint gum, which I personally think helps me retain my information better.  I always chew gum when I study and then when I take a test I chew that same flavored gum to jot my memory, some say that doesn’t affect your memory at all, but it is actually scientifically proven to enhance your memory.

After finishing the test, I was in full panic mode, I thought I got a B and quite frankly I wanted an A.  Many people think that sounds selfish and greedy but you know what I work hard for my grades and I am not satisfied with B’s; I earn A’s.  The test is composed of 30 multiple-choice questions and there were a few multiple choice questions that I had to guess on; as you can imagine I was anxious about it.  I didn’t want to have to leave for break not knowing my grade, but my teacher reassured me that she was going to go have the tests graded and then she was going to email us our grades because the tests were scantron, which makes it easy on her. 

I hurried back to my house to write another page of my paper, trying to scan my head for ideas of what made me who I was because to be honest that was a loaded question to try to answer in 3-4 pages, right before spring break.  How would you define normal?  How would you define abnormal especially after being sick for seven years or actually how would you define abnormal in general?  I don’t like the terms normal or abnormal; in my opinion it is just another way for society to categorize people.  Here is an excerpt from my paper for my child psychopathology class:

Over the past seven years, while dealing with college, relationships, and jobs, I have also been struggling with my Lyme disease. On the outside, I look like any other blue-eyed, dirty blonde hair, social college student. Many people, including some of my closest friends, do not realize that I have shifted from the loud, outgoing extrovert to a quiet introvert. It pains me when I have to talk in front of others. These are all new developments as a result of my Lyme disease. I am now self-conscious and very susceptible to judgment. I am also always worried about how people will react to my choice of treatment of my Lyme disease. I chose a controversial method, as not much is known about it yet. I currently have a PICC line in my left arm that delivers antibiotics intravenously to my central nervous system. Most people, though, would not even notice my PICC at first glance; I hide it because I do not want it to handicap me. I struggled at first to find “normalcy” while living a life so unlike that of my peers, but I have learned how to adjust to life with it and realize how much benefit it adds to my health, which significantly outweighs the costs.  I may not be able to exercise the way I would like, swim, get my arm wet, etc, but I am not bedbound!  In addition, my close friends and family have been able to help me make light of the situation; in my family, we say I have a “Nemo” arm and it actually does make it something to smile about!  It is finding joy in the little things. 
I may not be able to control things that happen as a result of my Lyme disease, so I try to control what I can. I focus on my strengths and try to overcome my weaknesses. When I was at my sickest, my weakest, I would cry to my mom that I just wanted to be normal. She constantly reminded me that there is no “normal.” Everyone is different and unique in their own way; everyone has different strengths, values, and experiences. I have learned that we all want to fit in with the “status quo,” but being different is just as important. While I do not define myself as “normal” or, on the other hand, “abnormal,” I am still trying to find where I belong.  I try to let my values, my friends and my abilities define me. Since becoming sick, I have realized that everyone’s differences can be utilized in different ways to try to attain the highest level of personal success.  “Normal” and “abnormal” are our societies way of labeling people and then isolating them into their specific categories where some people are welcome and others are not.  I am not going to define myself in those terms; I would rather be defined by my values, my friends and my abilities. 

My childhood and the values that my parents instill in me radically shaped my life. Unfortunately my Lyme disease has also played a big role in my life, but I try not to let that negatively impact me. I have learned that if I can understand myself, how I view my strengths, my weaknesses, and myself, I can undertake any challenge. 

Quite an impactful excerpt if I do say so myself and on that note I will end this blog post.  Coming soon in the next post will be my doctor’s appointment, my trip to Florida and like always a little plot twist! 

 

P.S. I realized that I sound OCD when I talk about my grades needing to be A’s and how I am not satisfied with B’s, does anyone else have this symptom as a result of Lyme or coinfection?  I have heard of other people that have developed OCD; the doctor says it is not uncommon with Bartonella. 

“Don’t allow your wounds to turn you into a person you are not.”

New Tick-Bourne Disease Found!

"Tufts researchers show that in some cases, what looks like Lyme could be a completely different illness transmitted by the same bug."  Ticks are capable of more then what we think to be capable, please be careful!  Click the link to learn more about the other illnesses the tick can transmit in addition to what we know as Lyme disease!  


http://now.tufts.edu/articles/new-tick-borne-disease-found



"Hope, it is the only thing stronger than fear."

When you feel defeated...

Everyone has times when they begin to wonder why they have held on as long as they did, I am at that point.  This has been an extremely rough week and a half off of antibiotics; my body is not detoxing and I feel very toxic.  My pain seems to be worse off of antibiotics and that concerns me and makes me think that I will need antibiotics for the rest of my life.  I know that is an irrational thought, but sometimes it is hard to think rationally when I feel this way.

Does anyone else ever feel worse off of antibiotics?  If so, what do they do?

I found this quote and then edited it to give me a little project to distract me from worrying about other things.  All I can say is hang in there.  Things will get better.  I am speaking to everyone and myself.  

Plot Twist

My new year started off with a bang to say the least!  I went to my LLMD at the beginning of January and found out that I would have ANOTHER round of Tigecycline.  I was able to do Tigecycline before but I was exhausted and nauseous, in addition to every Lyme symptom being exacerbated.  That round was doable because I was home and I could rest and do nothing at all for days at a time if that was what I needed, that’s what winter break is for a college student anyways!  

Before I was even able to begin this next round of intense IV treatment and oral antibiotic treatment, I began to feel very sick.  If this was a Herxheimer reaction, this was one I had never felt before.  It was Martin Luther King Monday; I woke up with a fever so high that I couldn’t get out of bed.  I had texted two of my three roommates just waiting for them to wake up to devise a plan.  By the time my roommate Megan had woken up, I told her I had to get to the hospital.  I was very thankful that my other roommate Jackie took me to the hospital and waited with me all day until I was able to be seen by a doctor and had the appropriate test ran to figure out what was going on.

By this time the doctor had decided to pull my PICC line, because my fever was 104.3 and told me I would be staying overnight to be monitored.  I was in complete panic mode.  I was not ready to have my PICC line pulled, I still had another round of IV treatment left, was my thought process.  That first night my blood pressure dropped to low 70’s/over low 30’s, scary experience to say the least; ironically it did that the second night as well.  I had to stay in the hospital for three nights, four days.  They did culture the tip of my PICC line and found out that I had a gram-negative rod, so the consensus was that I had sepsis based on a few of my other symptoms as well!  I was given Vancomycin every 8 hours and then Rocephin twice a day.  When I was discharged I was instructed to take Cipro twice a day for 10 days. 

Sepsis, septic shock, gram negative rods, picc lines -->  These were words I never thought I would know the meanings of, but now they are part of my vocabulary.  In some ways I feel like I was robbed of part of my innocence by having to deal with such uncertainty and illness at such a young age.  Then on the other hand I am much more mature then a lot of my friends and I do attribute that to my illness because I never would have had that driving force to grow up until many years later. 

I thought I was done with my IV antibiotic therapy since my PICC line was out, but my doctor had decided to put one back in after I finished my sepsis antibiotic treatment.  SO I am not without a PICC currently.  I did just finish my Tigecycline round that I was supposed to start January 27^th; I started it February 3^rd and just finished my CoArtem on Wednesday.  Now I am just trying to detox; I am experiencing some of the most pain I have experienced in awhile including nerve pain in my back/neck, frontal headaches, swollen glands, cognitive confusion, word retrieval issues, and more.  But I know I will get through this, plus I now have something to look forward to, I am going to Florida for spring break! 

“Take vacations—go as many places as you can—you can always make money, you can’t always make memories.”