The Winding Road

The past few days have been a mix of the good the bad and the ugly, but then again I guess that is how life is a mix of good and bad.  People always say you have to experience the bad to experience the good.  What does that even mean for someone who has had Lyme disease for years now and is about to turn 21.  I am struggling with my 21^st birthday just nine days away.  I have hated birthdays for the past five years now because in my mind they represent another year of struggling with my ongoing battle with Lyme disease.  For a few of those years I was fighting an undiagnosed battle, so at least this time the battle is diagnosed and I have a doctor that I have faith in.  It still doesn’t make it any easier in my mind that I am turning 21 and this is where I am in my life.  I would love to be your typical 21 year old, experiencing life this summer with an internship and going out with my friends on the weekends for drinks, but instead I will be doing daily infusions, praying that they work.

Recap of the past few days

            I was feeling super trapped at home with my parents and decided to drive to Harrisonburg where I still have my lease for the entire summer to visit some friends.  I get great joy in visiting with my friends; they always raise me up when I am feeling low and now that I am becoming more comfortable about my current situation I do not mind talking about my Lyme disease with them.  So, Sunday night my friend Craig took my friend Austin and I to a Mennonite family’s house to make pretzels from scratch and the family ended up playing guitar and singing songs!  It was so inspirational and uplifting; it was honestly just what I needed.  They were genuinely happy, never had I met people so welcoming and happy.  I left pondering if I would ever be that happy and if so when.

            Then, Monday I was able to see my friend Taylor who I also love talking to, I just wish our schedules weren’t so conflicting so I would be able to see her more.  Luckily, every time I see her it is as though nothing has changed, that is my favorite Taylor quality.  I am appreciative for having a friend like that!  *On Monday I noticed I was very fatigued I do think the Merrem maybe kicking in or having some effect now. 

            I also was able to celebrate my roommate’s birthday at midnight with her, which was awesome!  I am glad I didn’t miss out on that and isolate myself by not going out with her because usually I would have said no, but this time I decided yes.  The night ended up a little bit on the crazy side, but all in all everyone ended up alive in the morning!

            Tuesday I woke up at 7:30 to go with my new good friend Kelsey to have a mole removed and talking to Kelsey always puts me in a great mood!  She is a great listener!  Plus watching them remove the mole was kind of a cool process.  Tuesday morning though, I did notice both knees were swollen, I also had a pretty bad frontal headache and I just felt sluggish.  As the days progress I am beginning to feel worse, which concerns me.

            The best part of my day though was probably creating a happy list with my friend Linda while doing my lactated ringer drip.  She struggled to think of things that made her happy; she has been extremely pessimistic lately.  I was able to get her to list a few things.  Then at 6:45pm she texted me a list of things that make her happy and it was me, irises, cardinals, salsa, hula hooping, acupuncture, Mexican food, smiles, and thanking people.  I was overjoyed that she did this all on her own and sent it to me.  I draw a lot of my inspiration from this woman; she has sacrificed a lot of her own health for her sons and family and she has been such a trooper.  I am lucky to have met her.

            I went on a very long walk with my friend Megan last night just to destress and catch up!  It had been so long since I had seen her since our schedules are opposing.  She made me think of things in such a different way; she opened my eyes to solving problems in my life.  She made me realize that problems aren’t going to be solved by calling people out because everyone does things wrong, its innate, its about working through them together.  She used it in reference with God and sinning, but since I am not religious I just think of it that way.

            I did not sleep well last night I don’t know why, which is concerning because I need sleep to heal.  I woke up early to go take my techtest because I have a hold on my James Madison University account and I need to drop a class and of course the lab is closed for a few days!!!  That was extremely frustrating like beyond frustrating.  But it happens.  That just meant I was able to go on a long walk with my friend Rachel, which I was also grateful for.  I hadn’t seen her in awhile and she was graduating.  She filled me in on her life and vice versa; she isn’t moving far away from here so luckily I will be able to see her still!  I loved getting some sunshine today I think that is what kept my sanity until my phone call with my mom J it is 86 degrees!!!

My Mom called me at 4:30pm and I randomly just broke down when she asked me what I wanted exactly for my 21^st birthday.

Symptom update:

-appetite decreasing

-sleep is disturbed

-swelling in joints

-very spacey

-memory loss is becoming more noticeable

-word loss

-fatigue

Here is my ending quoteà “Each morning we are born again. What we do today is what matters most.”

Isolation

Although I make a conscious effort to get out of my house and surround myself with other people specifically my friends, I still feel very isolated.  Even when I am with my friends, I feel like a ghost.  I feel as though I am just going through the motions of being there and really I am only there in body, my mind is elsewhere.  I feel like a zombie, whom others cannot relate to.

With this being said, I did make a really big effort to get out of my house on both Friday and today to do something to get me moving, so I chose my all time favorite activityà hot yoga!  I was just gifted a Groupon to a hot yoga studio by my house, Friday was my first time going to this studio and I have to say the energy in the studio was very comforting to my mood.  I was able to relax and feel accepted.  Being able to sweat made me feel like I was releasing some of the toxins that the intravenous antibiotics were killing off.

Friday afternoon, the Goo Goo Dolls played at Pimlico racetrack and I found tickets for $13 on Living Social, which is almost a steal!  I convinced my friend Jordan to go with me and country singer Rodney Atkins played first!  It was such a great night; I had forgotten how many hit songs the Goo Goo Dolls had.  They have Iris, Black Balloons, Slide, Notbroken, Let Love In, and Better Days just to name a few!  This reminded me of the perfect summer night, perfect sunshine, good company, and good music!  While at the concert, we met these two women in their fifties who told us they were drunk which was very obvious, but the best part of the story was that they told us they were drunk and didn’t care what other people thought about them.  I could tell that they were very classy women, who were just best friends that wanted to let loose.  I looked at Jordan and said I hope one day we are like that.  I mean they were falling all over the place and laughing hysterically until they were crying!  They had that much spirit!

Anyways after the concert, I went to go over my best friend Jenn from high school’s house.  She was only home for the weekend because she has to stay at Clemson for the summer.  I was truly looking forward to some bonding time between the two of us.  Let me rephrase that… I needed some bonding time between the two of us.  I am beginning to lose my mind.  I can feel my body beginning to get weaker every day more things are beginning to hurt due to the antibiotics, the same thing happened last summer but I am going to put up one hell of a fight this year!  She watched me fade last summer and was one of the few friends that stood by me but I really needed to see her this time she came up for the weekend.  I arrived at her house and a few other people showed up and within one hour and fifteen minutes they had decided they were going to the bar.  I left her house at 11:43 fuming literally fuming.  I was crying, teardrops were just rolling down my cheeks.  How could I have not been hurt, she knew I couldn’t drink and I am not 21 and there was a bouncer at the door so I couldn’t even get in and sit at the table!  It was just ridiculous.

By the time I got home I was so angry, that I couldn’t sleep even though I was passed exhaustion.  I took 2 baclofen and an ambien and didn’t sleep.  By 2:30 I took another ambien and still woke up at 7:30 un-rested; I think I was still so angry that I physically couldn’t sleep.  Maybe that is all in my head.  Who knows.  I have also noticed air hunger coming back and chest pain coming back… à I know that is not good! 

Today though my Mom went to hot yoga with me, which was a nice routine.  I felt good knowing she was exercising.  As my health continues to decrease, her blood pressure continues to increase.  I hate knowing that I am a main contributor for her high blood pressure, she refuses to go on blood pressure medication for good reason but at the same time there is a line and she has reached it.  She did make it through the whole hot yoga class though!  Then, my lactated ringer today took over four hours; I was more than bored.  During the time it took for it to finish a drip I took a nap, took an online test, read a chapter for my online course, and watched a movie!  Next thing I knew my Dad was getting home from being gone all day, he must have hit a nerve in me because then all of a sudden he was rushing out the door and I felt like I was alone again.  Alone like I always am!  These IVs are very time consuming, boring, isolating, and at the end of the day when my family gets home I want to see them and have actual conversation!  I don’t want them rushing off somewhere else! 

I did confront them at dinnerà  They may say it was more of a snap, but it got the point across.  A lot has been building up and I didn’t mean to snap but I did, luckily after dinner we all ended up going on a nice walk together then went and bought Powerball tickets.  Wish me luck J

I am going to end on the quote of “ A good laugh and a long sleep are the two best cures for anything.”

Circles

Living with Lyme often makes me feel as though my life never is progressing forward; I feel like it keeps going in circles.  I keep dealing with the same problems over and over again; I just wonder when it all will go away.

Yesterday I went to physical therapy after a two and a half year vacation and once again my sacrum was out of place, which caused my entire many of my vertebrae to be out of alignment.  These are the same problems that I dealt with all of high school.  I went to Life Strength physical therapy once a week for pretty much all of high school for alignment issues and now I am re-circling.  When your back is out of alignment it can cause added pain and stress to other places that don’t really need it especially when I am trying to stay healthy and heal!!!!

I am so frustrated right now!  Another very touchy topic for me is home health care for my PICC.  When I was at JMU, I had a terrible experience with my first home health nurse and even my second nurse didn’t follow protocol as well as she should have.  I may sound anal about this, but if you had a central line in your arm that leads to your heart I bet you would be the same way.  I have read so many horror stories about people getting infections, blood clots, and sometimes-even death if people don’t pay close attention to these risks!  So anyways, yesterday my new nurse Doug, who by the way was a well-rounded older man with gray hair, came over to change my dressing and inspect the insertion site.  He had no idea what he was doing; when he was taking my current dressing off he didn’t even wear gloves and he was tearing the dressing off!  For those of you that cannot relate to this feeling, the skin under the dressing is so sensitive and rawà it is NOT meant to be torn off.  You are supposed to be gentle.  But, beyond that he did not wear gloves that just sent me over the edge and he didn’t even do the dressing right.  He didn’t clean the insertion site at all; he only cleaned around it!  Then he attempted to put the Tegaderm cover over the site, but he just butchered it!  He didn’t even cover the statlock up; I wanted to take a picture but I knew that would be inappropriate.  He had to open a whole other dressing kit to get out another Tegaderm cover out to cover it up again!  It was just ridiculous!!!!!!!!

Needless to say, my Mom had to call the home health agency and report that we were not happy with Doug.  They apologized and said they would send a new nurse out later that evening, but they never specified a time so I couldn’t even go anywhere.  The worst feeling for me is feeling trapped which is what I was beginning to feel yesterday.  I couldn’t go anywhere waiting for this nurse and that was a common feeling I used to feel freshman year at Elon because I didn’t have a car and I was so far from home.  Once again though reiterating that feeling of circling and not moving forward.

Finally, after much pestering from my Mom, who was very anxious because she missed her art class, Miranda, my new nurse, showed up at 8pm.  Miranda had a thick accent, which I could not decipher, got the job done!  I could tell she was extremely nervous, rightfully so though.  She followed all of the steps to a tee and even looked at the picture of what my PICC dressing looked like before Doug had messed it up.  She was also very patient with my Mom who was sitting in the room reading the instructions word for word that my doctor had typed up; I must admit it was helpful, but a bit much. 

I didn’t sleep well last night because I didn’t take the Remeron; I am afraid it is making me gain weight so I wanted to see if for a few days my appetite decreased.  I must admit though the Remeron does help me sleep because I was up at 5:45am and I just was lying there until 8:15am.

When I did wake up I wake up I was experiencing a lot of joint pain in my knees, pain in my back, and lots of muscle pain, overall negative outlook, pressure behind my eyes, irritable, angry, and anxious about the future which made me feel like I was circling too!

Ooooh! Something exciting did happen!  I was interviewed over the phone for an article to be published in the Harrisonburg newspaper on Lyme disease.  I fascinated the woman because I was a JMU student and she was a JMU graduate, so she interviewed me for 30 minutes asking me a bunch of questions about my specific story and about the overall controversy concerning the disease!  I was so happy to be able to educate someone and hopefully a bunch of people if it is published like she said it would be so I will definitely keep everyone updated on that!  That did give me a lot of hope!  J

My ending quote today is, “You will not be punished for your anger, you will be punished by your anger.”  

Never self doubt

I doubted myself making it through the Taylor Swift concert and I knew my family was doubting me the entire time.  My sister had already told my Mom that she was not leaving the concert at 10pm or before and that if I wasn't feeling well my Mom and I could sit outside of the Verizon Center, while my sister and her friend enjoyed the concert by themselves.  The Verizon Center is in the middle of Washington D.C., so that idea is literally outrageous.  Luckily I never had to use that option.  I made it through the concert.  I even got to rock my cute PICC evening wear that I ordered online when I had my last PICC to the concert.

My Mom, Payton (sister), Kasey (her friend), and I took the metro down to the concert which wasn't as bad or crowded as I had expected and the concert was awesome!  I didn't enjoy her new songs near as much as I did her old songs though.  I still love her song Love Story; it is such a fairytale like song.  I also loved her new song 22 that she described as embracing the unknown, which I related to my life with Lyme disease and about how so many things in my life are unknown right now and that is all I keep thinking about.

I keep thinking about, how long will I be on intravenous antibiotics?, will I be able to go back to school in the fall?,  will these antibiotics be strong enough this time?,  is it worth going through this all over again or should I try to just live a healthy lifestyle?  Who knows what the best option is?  I always feel guilty for the amount of money the treatment is, for the uncertainty of how the treatment is going to react in my body, for how I act when I get angry or don't feel well, and for just how much I have put my family and close friends through in general.  I can't explain a lot of what happens to me and that can be very isolating if people don't ask questions to better try to understand me and aren't patient with me.

Then yesterday was Mother's Day and my Mom's only wish was that the house be cleaned.  Let me tell you that wasn't a small request, our house was messy, not dirty, but messy.  We have a cleaning lady, that comes once a week, so cleanliness isn't the issue.  The issue is the accumulation of stuff everywhere because Payton just moved back into the house from the dorms and I have temporarily moved home for the summer, so needless to say we have stuff everywhere!  We had a blender sitting on the floor, supplements scattered all over the house, dirty clothes in the hallway, and thats just to start the list!  I sorted all of my pills for the next two weeks which is an ordeal in itself, then picked up around the house, and began hardcore cleaning my room.  When cleaning my room, I became quite nostalgic.  I have a big box of old birthday cards, letters, accomplishments, you name it and I probably saved it if it meant a lot to me.  I was filled with mixed emotions looking through the box and putting new letters and cards in the box; part of me was happy and felt loved my so many people.  But then there was another part of me that was sad and missed some of the people that had been apart of these memories.  I know that there is a reason these people aren't currently in my present and that the world has a weird way of working itself out.

After I cleaned my room I was exhausted, lately I have been very sore and keep getting fatigued quickly.  I feel like I have a three hour window then I need a two and a half hour nap because that is exactly how Mother's Day was I needed a nap after a few hours.  It is so frustrating; I get jealous of watching other people go all day long and not fatigue as quickly.  But, it is what it is while I am healing.  It was nice because my grandma was able to come out for dinner which my sister cooked so that my Mom had a break.  Everything was running really smoothly until my Mom brought up my 21st birthday and drinking.  I guess we had two very different ideas of how it was going to occur.  I have been picturing my 21st birthday since I was 16 and had my first drink with my best friend Jenn.  This Lyme disease has already taken so much from me, I just am not letting it take my 21st birthday from me as well.  And my Mom just doesn't see it that way.  I think what scares her most is knowing how many antibiotics I will be on around my birthday because that does lower your tolerance and I do not drink often so I will already have lower tolerance.  I just really did not expect her to freak out as much as she did because in my opinion drinking on the night of your 21st is a given and something I have talked about since I was probably 16!!!  She reacted so immaturely as to say that the rest of my family was going to go out to dinner on the night of my birthday without me since I clearly had other plans.  I am sure she will warm up to the idea and come around though as it gets closer to my actual birthday.

Anyways, last night I actually slept a surprising 10 hours!  This Remeron and Marinol combination is working quite well for me; I think my body was getting to used to the Ambien and Xanax so mixing it up is working!  I am just thankful I am getting sleep.  Today was my first antibiotic day through the IV. At first my Mom and I couldn't figure out how to mix the 1 gram of Merrem with the Saline so we had to call the doctors office and be connected to an infusion nurse, who kindly walked us through the process.  Then for some reason as soon as the Merrem was finished running dripping intravenously, blood started traveling back through the PICC line.  Here is a picture in case you can't imagine what that would look like:

I luckily have a clip on my PICC line that I can clip and that reassures me that no more blood can come out of me!  Then, I just did my ususal saline and heparin flushes and locked it again!  I was tired after that process, but went to my friend Heather's house to get out of the house I was tired of sitting around.  I keep feeling very trapped at home.  I was there for a few hours but then I headed home, when I got home I went on a 3 mile walk, which as you can imagine exhausted me so I needed a 2 and a half hour nap!  When I woke up it was almost time to do my second dose of Merrem after I went on a short walk again, I just can't get enough fresh air!

My ending quote is "Take pride in how far you have come and take faith in how far you can go."

Verizon Center here I come

Yesterday I attempted my first shower post-PICC procedure and let me tell you that is always a production.  How do people take showers and not really use their arm?  Especially their dominant arm! I have a drycorp cover that I use and then I have a cast protector that goes all the way up to my shoulder that I use too!  I had been procrastinating this shower for two days, but I have been walking 3 miles everyday for a little bit of exercise since my PICC procedure until I can get back into the yoga room so I think it was time for a shower.  Plus my hair was a bit greasy!  Yikes!  It is interesting because since developing Lyme and co-infections, I have become obsessive about working out.  I ususally never miss a day of some form of working out unless I really cannot move my body; I never had this obsession with working out before Lyme.  I was talking to a boy my age with Lyme and the two co-infections that I have too a few days ago and he has the exact same obsession!  I had never met anyone who was like that before!  I think in talking with each other we were both shocked that this compulsion to exercise existed in other people; for me it was almost a relief to know that I wasn't alone.

After my shower I had decided not to sit in the house for the entire afternoon like I had the previous two days because it wasn't healthy, plus my friend Josh from college was super bored at home and was wondering if I wanted to do something.  I had also told my sister if I was feeling up to it that I would do something with her since I know she is leaving for college soon and I haven't spent much time with her over the past 7 years due to me being sick and spending a lot of time at the doctors.  I decided to combine my time with Josh and my sister and see if they both wanted to go see the Great Gatsby because there is no way I could handle much more activity then that without getting too exhausted.  Both agreed and within two hours I was sitting in the theatre watching the Great Gatsby!  I must admit I had no expectations for the movie because I never read the book; I can't say if it was good or bad in comparison to the book.  I thought it was pretty good a little long in some parts, boy did they party hard in the 1920's/30's!  I was impressed!  I also really enjoyed the soundtrack.  After Josh and I talked about his 21st birthday, I always forget he is only 6 days older than me!  He has a lot of ideas of what he wants to do, but a lot of the people he is close to currently are from college so he, similar to me, is out of luck with the summer birthday dilemma.  He can't ask every single one of his friends to come in from out of town to stay with his family for his birthday because that is also a lot to ask of his parents.  I told him I would help him plan his birthday a day next week, that will give me something to do!

Going to the movies was exhausting even though I didn't even drive, I ended up falling asleep on the couch from 7-9 and then waking up for some frozen yogurt with fruit!  After I woke up I was afraid I wasn't going to be able to go to bed since it was already 9, but surprisingly I was still exhausted once I took the Remeron and the Marinol I slept from 10:45-8:30, so I can't complain.  I think my body is adjusting to the trauma of having a foreign object in it aka the PICC.

When I woke up I was pretty down today, my joints feel swollen and I just don't have a high tolerance for noise at all.  My parents were yelling to each other from upstairs and downstairs and I just couldn't take it; they don't understand how my brain interprets them yelling.  Plus one of my dogs is very whiney and he whines and barks until you let him inside or outside or he scrates on our screen door; I just don't have the tolerance for that this morning.

I probably do not have the tolerance because I know that the Taylor Swift concert at the Verizon Center is tonight and I would like nothing more than to be able to go like a normal 20 year old.  But since I am not your normal 20 year old and I have severe sound and vision issues, would it really be fair to myself or others to go?  I have not made it through a full concert in the past 3 years because I just can't do it with all of the sounds and lights; I get way too irritated and enraged!  I hate that. It pisses me off.

Well, after a 2 hour nap and a super late lunch, I have decided I am going to this concert.  I don't f***ing care anymore, (sorry if that is vulgar).  I am tired of missing out on amazing opportunities.  Taylor Swift tickets do not come around very often and I do not want to pass them up.  I know my family is waiting for me to drop out and say that I am not going, but not this time.  I am going to get dressed, go this concert, and have a great time.  I will make it through it; I know I can and I will.  Taylor Swift here I come.

I survived!

I survived my PICC line procedure yesterday!  Here is a picture of the finished product:

 

The drive to George Washington Hospital wasn't bad at 5:30 in the morning and surprisingly my Dad, grandmother, and I found it okay.  My Mom was unable to come with me because she was in California on a business trip, which is why my grandmother took her place on this hospital trip.  I was checked in and finished with registration by 7:10 and then I was waiting in the crowded waiting room for a man named Garrett to take me back to where the procedure was going to occur.  At around 7:30 he finally approached us and told us that the nurse was still prepping the room and that it shouldn't be more than 15 more minutes, I thought it was really nice for him to come down to tell us that.  I was growing more anxious waiting in the waiting room with sick people and hearing all of the different noises so I decided to take 1 of my 2 valliums that were prescribed to me for my procedure.  Then, I was going to save the other until he was taking me back to the room because usually they still have to take my blood pressure, temperature, etc before they can do the actual procedure anyway, which is exactly what I did.  Except the only difference was I am not used to vallium at all and was completely out of it for not ONLY the procedure BUT the rest of the day also.  You could definitely say it served its purpose.  

When the vallium I took for the procedure had at least worn off enough for me to become lucid I asked the nurse how come the PICC was purple and looked so thick, she said that is because I had actually been given a PowerPICC, which has the abilitiy to have constrast injected directly into it for a CT scan if I ever needed one.  I guess that is always a plus, one less IV!  But, let's hope I never have to have one in the near future!

I just realized I never explained what exactly a PICC line was for anyone reading this blog that is unfamiliar with them.  Well, a essentially a PICC is a peripherally inserted central catheter, which is a long, flexible tube inserted in a vein to provide intraveous access to treatments.  My PICC was inserted right above my elbow crease, threaded through the right branchial vein, and the tip is touching the superior vena cava. What most people do not understand is how long these PICC lines are, mine is 38 centimeters long!  

When I got to the doctors office, I had an appointment with an infusion nurse and I had my first dose of antibiotics in my PICC line.  The antibiotic they chose to start me on was merrem; I do not know that much about merrem yet other than that I did not have an allergic reaction to it in the office!  My infusion nurse Erica was extremely detailed with my Dad and grandmother handing them a green booklet labeled "Patient Infusion Handbook" with detailed instructions on how to care for you and your PICC.  She taught all of us how to administer my antibiotics and how to change my dressing.  Unfortunately I am not going to be able to change my dressing because of where the PICC is located on my arm, but I can verbally walk someone else through it which is much nicer than relying on a home nurse to do it once a week in case I need it changed sooner than she is able to come out to my house.

I must admit I was fuming that I was only starting with one antibiotic intravenously; I did not get this PICC in for nothing.  Plus, in my mind merrem is similar to rocephin and like I have previously mentioned I have already done 14 weeks of rocephin and it didn't work so I am fed up!  When Erica told me that I was starting with merrem I had her go ask my doctor if she made a mistake because I thought surely this had to be incorrect and that may seem childish or immature, but I am so exhausted with this process.  I am tired of being in pain.  I am tired of suffering because of this disease.  I am tired of giving up opportunities because of this disease.  When Erica spoke to my doctor and came back to the room she told me there hadn't been a mistake and that this was the protocol that the doctors wanted to start me on.  Frustration + pain never mix well together.  By the time I finished my IV and the doctor walked in I was angry and I expressed that, she saw it across my face.  She asked me what I wanted and I told her ideally I would be on two antiobitics intravenously simultaneously.  It is what it is now though.

Based on my current symptoms, my doctor decided I needed to prioritize sleep before I could move on to a harsher protocol as I would call it.  With that being said, I am going to try 15mg of Remeron for sleep for five days and if that doesn't work I am going to try 30 mg.  In addition, I am adding Marinol 2.5-5mg at bedtime which can also help with nausea and pain.  I found out that Marinol is essentially medical marijuana in a pill form!  I was shocked when I googled it like I do to all my meds and found that out!  I can't say my Mom is too happy about that one, but if it will help me then she said we my as well try it, that seems to be our family motto now adays.  My doctor also added mobic 7.5mg twice a day to help with joint swelling.  Then in terms of antibiotics this is the protocol, plus on my off days I will be doing 1000ml lactated ringers containing sodium, potassium, chloride, and lactate:

This will be interesting to say the least especially that last week because that is my 21st birthday,  May 31st!  Luckily I was able to get Flagyl, the blue antibiotic on the right moved to May 30th, but still Lyme sucks!  I am upset nonetheless.

Yesterday was an exhausting, overwhelming day; I could barely take in all of the information.  Thankfully last night I slept 11 hours, my body needed it, when I did wake up though I woke up to a very swollen/bruised arm where the PICC was inserted, so I just ate some frozen yogurt and took my morning pills and went back to bed for 3 and a half hours!  If my doctor wants me to sleep, sleep is what I will do!

The Last Supper

Today felt just like the last supper since I am getting my PICC placed in the morning.  It poured rain all day which reflected my mood, but I still despite the rain decided to walk outside in my neighborhood just because it didn't matter today if my arms got wet.  Tomorrow it will be an issue because the PICC is not allowed to get wet.  Summer is approaching and I will once again not be allowed to swim in the ocean or in swimming pools unless I wear my cover and even then I am not supossed to, that would be a very rebellious day for me!  Last summer I only immersed my arm in water one time and that was the ocean because I truly do believe that salt water is a natural healer, which is based off of one of my favorite quotes, "The cure for anything is salt water- tears, sweat, and the sea."  I was lucky that nothing happened that one time I did immerse my arm under water; don't get me wrong it was completely covered by a drycorp but still!  I shouldn't take such big risks when it comes to something so serious, a PICC line.  I also practiced yoga today and made sure I put a lot of pressure on my arms and shoulders since I know after tomorrow that will be limited for quite some time again.  I know I will be able to still practice yoga it will just be modified.

My epsom salt bath and then 20 minute long shower was what made the day truly feel like the last supper.  I think that is what I miss most when I have my PICC in, a normal shower without having to worry about getting it wet or water in my dressing.  I was very paranoid last time, some could possibly argue too paranoid, that bathing would be a complete ordeal for me and that is one thing I am dreading again.  It is so hard to shampoo/conditioner/wash your body/shave your legs with ONE ARM!  I challenge you to try it sometime especially opening the shampoo containers and such that is where the real challenge lies.  I wanted to make sure I made this bath and shower as relaxing as possible for me; I even played all of my favorite songs while I was in the bath just relaxing and thinking about all of the things that were going to change, but how I was going to make the best out of it.  I have a much stronger support system this summer and I am ready for whatever challenges I may face!

Today I made a summer contract with myself to hold myself accountable for things that will be necessary for me to continue doing or start doing to not isolate myself over the summer and remain as healthy as I can be given the course of treatment I will be undergoing.  I recognize that it is hard to hold myself accountable especially whild undergoing treatment so I sent the contract to my cousin as well asking for her constant love and support with me through this.  Her encouraging words have helped fuel me to want to never give up.  I was talking to her one day in the spring as I was breaking down and I was talking to her about giving up, and she said something along the lines of don't give up, you never know how close you are to the end.  This was said in the context of fighting Lyme disease and continuing with treatment and she was so right; I am so glad I did not give up because I am feeling a huge turn around point once I start IV antibiotics tomorrow!

One closing remark before I go to bed considering I have to get up in 5 hours to drive to DC to get my PICC placed, I have the first procedure time 7:30!  I must admit I am growing anxious; I have already had it done twice, it shouldn't be a big deal now.  Because I have had one bad experience my mind automatically associates a PICC procedure with that one bad time even though the second time I was much smoother, at least it is a different hospital!  The point I am trying to share though is that I have never felt so empowered sharing my Lyme experience than I have through just one simple blog post.  I have had numerous people tell me that his or her story is similar and that they wish they could share their story or their feelings like I am right now and my words of wisdom for you is everyone gets there at their own pace, it is just like Lyme treatment.  I didn't tell anyone I had Lyme last other then a few close friends, family and my roommates, but now I want to help other people by sharing my story and letting other people know they are not alone in their feelings or experiences.  I just want to spread awareness for this disease that has taken so much from me, my family, and from many people I have become blessed to have met along my journey and for the thousands of other people suffering in silence.


H-->Have
O-->Only
P-->Positive
E-->Expectations

May 6th, 2013

This blog was created to document my journey with Lyme, Bartonella and Babesiosis.  I am not your typical 20 year-old college student or should I say almost 21 year old!  I have been sick for almost seven years now, but went undiagnosed for over four years allowing the spirochete to entrench deeper into my muscles, joints, and unfortunately my central nervous system.  I also have created this blog to help myself remember my current symptoms, protocols, feelings, to help myself ultimately heal.

Currently, I am home from college for the summer!  I don't know how I survived this past semester at school with living in a college apartment, taking 16 credits, being 3 hours away from home, and 2 hours away from my doctor.  It is very isolating when you have Lyme disease and don't know how to describe how you feel or what is happening to you to other people.  Bazaar things would happen to me and I wouldn't know how to or quite frankly want to tell other people at first.  How could I begin to explain to people that my vision would go blurry in the library and I would need a ride back to my apartment?  That is such an embarassing thing, I felt like I was losing control of my life, which is something I so desperately try to hold on to.

Anyways, my symptoms continued to get worse all through the semester and I could tell they were getting deeper into my nervous system and that oral antibiotics just were not cutting it, so intravenous antibiotics were going to be necessary again.  I was nervous that if it hadn't worked the first time why try it a second time, but I had not done the full IV antibiotic protocol that this specific specialist would recommend based on my current symptoms and at this point I am desperate.  What do I have to lose?  Last summer I had done IV antibiotics for 14 weeks, but it was only rocephin and I did not see a dramatic improvement with it.  Plus, the PICC line ended up causing me more problems then benefits.  It coiled and had to get removed, then got a blood clot and had to get removed.  Needless to say, I am petrified for this summer and getting my PICC line inserted, which is on Wednesday!  I am going to be taking two classes for my major, so that I have something to focus on during the day other than being sick, while I go through treatment.  I need a distraction to keep me alive, without it I don't know what I would do and that seems to be a weird concept for most.

I also am hoping to spread more awareness with my blog about Lyme disease and about the different "faces" of Lyme disease.  Please feel free to comment and share your experiences or ask questions!

My current protocol that I was just on for the past 3 months was:
Omnicef 300mg twice daily on M,W, F (Week 1,2)
Septra 11/2 tab twice daily on M,W, F (Week 1,2)
Mepron 750 ml twice daily M,W, F (Week 1,2)
Artemisinin 800mg twice daily M,W, F (Week 1,2)
Minocin 100mg twice daily every day (Week 1,2)
Tindamax 500mg twice daily Th, F (Week 2)
CoArtem 20/120mg 4 tabs twice daily M,T, W (Week 3)
Then rest of week 3 and week 4 was always off of antibiotics then I would repeat.

Gaba- 750mg
Deplin-15mg
Biotin-5000mcg
MultiVitamin
B12
Fish Oils
Nattozyme
Niacin-500mg
Probiotics
Saccharomyces Boulardii
Vitamin D3- 5000Ius
Magnesium Citrate
5-HTP-200mg
Zonegran-75mg twice daily (focal seizures and headaches)
Topamax- 100mg twice daily
Neurontin- 600mg twice daily
Trileptal-150mg twice daily (focal seizures)
Baclofen
Tramadol HCl
Xanax
Adderall

I knew I took a lot of medications/supplements, but seeing it all listed never ceases to amaze me!  I go to my specialist right after I have my PICC inserted on Wednesday so I am sure I will have a completely different protocol then.  The doctors said this time I will be on an accelerated IV track this summer because I have already done intravenous antibiotics before so they are not starting with their normal antibiotics; they are throwing the hardcore stuff at me first!  Although that scares me I am ready, I am tired of dealing with this day after day, year after year.  Plus, I have dedicated all summer to getting better so I would rather be at my sickest now and have a chance of going back to school in the fall compared to being very sick for the rest of my life.  This disease is going down!

For those of you that will be reading my blog and either do not know me or are not familiar with the symptoms of Lyme disease and the co-infections that I have here are the ones that I currently have and can remember:

-headaches daily
-muscle aches (thighs, back, neck)
-chest pain
-hurts to breathe sometimes
-hand tremors
-nerve pain on my right side
-shooting nerve pain in my back
-vision issues
-sound sensitivity ****
-concentration problems
-thinning hair
-vivid nightmares
-digestion issues
-muscle twitches
-cold hands and feet
-sometimes will get freezing for no reason and cannot warm up my body(random chills)
-very low blood pressure
-severe anxiety
-panic attacks
-dizziness
-numbness in my arms and hands
-out of breath for no reason
-joint swelling
-sensitivity to light
-"zoning" out (focal seizures)
-horrible sleep problems
-memory loss