Another Year of Wisdom

With each new year everyone is thinking of goals they would like to accomplish, bad habits they need to quit, and always that added holiday weight they need to lose. And for most people this motivation is heartfelt but short lived.

I myself am like everyone else. I have always been a person to make list and set goals usually to only avoid or forget them all later. I do it with the best intentions to improve myself in certain aspects. Sometimes the deadlines help ward off procrastination, other times once the timeline has come and gone I find myself disappointed. 

This is especially true when you are chronically ill. When your body and your life are completely unpredictable from one minute to the next it is incredibly hard to set goals and keep them. 

Every year I sit down and make a list of the things I would like to achieve in the forth coming year. The list usually in tells things along the lines of; get healthier, focus on and do more school, work on my art, socialize more, and go places. For the average person this probably sounds easy however for me it is completely unobtainable. 

Get Healthier; that is something I absolutely want to achieve but that is way too broad of a category to cover in one year. I should make it easy on myself and go for “Research and try a new treatment or work on being able to handle eating more food”.

Focus on School; honestly I should graduate from college this summer. I’ve only acquired a year’s worth of credits. And as much as I love school, I can’t physically go and the college I attend doesn’t offer the classes I need to finish my degree online. So I’m basically screwed there.

Work on My Art; that is probably the most likely to happen. Even though being sick has killed my imagination. Not to mention going without sleep and only feeling like laying in bed all day makes getting up and building canvas and working on art installations a challenge.

Socialize More; more? Haha. I should say just socialize. I’ve got Facebook though and my best friend that lives and hour away so we’ll say I’m rating mediocre on that one.

And Going Places; obviously I don’t mean the doctor’s office. I would love to be able to take a trip and not to go see a doctor across the country, but at this point I might settle for that. 

The intention of this was not to come off as depressing but simply to prove a point. Even though I’m not checking off goals doesn’t mean I’m not living. And just because I have learned to set my bar of expectations for myself lower doesn’t mean I’ve given up. I still have dreams. It’s all about realization and adaption. 

My world is a very different one than yours and I along with millions of other people who are chronically ill just have to learn to tweak the world to fit us. Our mountains may be a little bit higher but our spirits are also a little bit stronger. So when we win our wars, those hidden dreams and low expectations will be blown out of proportion when we achieve them tenfold. 

So cheers to the New Year! To living it to YOUR fullest and achieving your own goals, as grandiose are minuscule as they may be!

Miss Hollywood

A lot of people say to me that the fact that I can laugh at my situation makes me strong. That couldn't be farther from the truth. Some days I am a grouch and just need to be left alone and some days I want to have a sob fest for myself. Its just when you have had so much (I just have to say it) SHIT happen to you that I have you either learn to laugh or go mental. Some days I teeter on that balance beam but always try to stay on the humorous side. 

About a week and a half ago I went in to have my old PORT taken out and a new one put in. My mom went with me and we went in about an hour before hand, normal protocol. They did the usual blood work and all that jazz, and I laid in the bed accessorized with my dark sunglasses and mask waiting to go back. Then my nurse pops her head in the door; “The doc isn’t feeling so good, he’s been sick all morning. I think he’s going to call it off.” I was okay with this to be honest because I really wanted to go home and lay down. So the head nurse comes in and tells us that he is going to reschedule so that we can leave in a minute. As soon as she left the hospital room phone range. I answered and it was my surgeon’s receptionist at his office telling me he wanted me to come back two days later for the surgery. Great, so I can leave now? Nope. My nurse popped her head back in the door and said “Wait a minute, he feels better. Think he’s going to do it today.” My mother and I shared a glance and busted out laughing. Only to me would this happen. After they changed their minds two more times the surgeon finally decided he felt ok. 

My mother was not happy about this because she didn’t want me to be exposed to any more germs than possible. I simply laughed and just said “It’s ok as long as he doesn’t puke in one of my open wounds!” Ahh life! I go back to the holding room and one of my favorite anesthesiologist comes over to talk to me and greets me with my hospital acquired nickname; “Miss Hollywood!” Apparently my dark sunglasses don’t give me that hard rocker look but the hollywood glamour look. And I’m not sure if it’s reassuring or sad that everyone in the surgery ward of my hospital knows me by name. 

In the operating room it took the anesthesiologist quite a while to get me to sleep, and to their astonishment or embarrassment they made a joke at which I laughed only for them to realize I was still awake. Priceless moments I tell you! About an hour later I was good to go home. Minus one old PORT, plus one new PORT, plus 14 stitches later and PONGO was welcomed to my right subclavian. And the forever infamous PICC line number 8 was pulled! Scary thing about that was the lumen that wasn’t working had about an inch and a half long clot in it! Apparently that’s what you get when you are as sweet as me...blood as thick as maple syrup! Haha!

Reflecting and Accepting

The past few months have been morphed into one big mess of memories; some better than others but with much reflection I am thankful for all of them. 

August began with the one month anniversary of me living out on my own and me coming to the desperate realization of how poor I was forever destined to be. The month was also marked by me being incredibly sick (what else is new?) and starting back on a heavy duty course of IV antibiotics for Lyme and the pneumonia. This left me in a somewhat delusional state from herxing horrifically, no sleep, and extreme inadequate nutrition. Thanks to Lyme I also missed out on a family beach vacation. Even though the beach is not at all my type of terrain, I don’t like the fact that it was the first and last family vacation that took place with all of our family members. 

September came and I was still sick with the dreaded pneumonia so my IV antibiotic protocol continued. And October quickly followed with the same. I had my birthday and celebrated by coming to my parent’s house and watching cable all day while infusing antibiotics and talking to the guy that came to install my parent’s internet. I must say he found my unique sense of humor comical and was intrigued by my substantial amount of medical knowledge. Halloween came and my third PORT quit working so I was forced to get a PICC line. That was just a bundle of nightmares waiting to bust open. 

November began in a hurried rush with lots of things to do. My doctor finally changed my antibiotics to a medication that I could inhale as a vapor through a nebulizer that began to help the pneumonia. My beloved grandmother that was battling cancer had taken a turn for the worse. So despite my usual mental and physical state of a person in an indisposed insomnious phase I spent as much time at my grandparent’s house as possible. I was shockingly surprised that my insomnia had finally become purposeful because numerous nights I sat awake in my grandmother’s room watching her sleep so that my mother could get some much needed rest. 

Thanksgiving was a monumental day as my brother and I cooked our traditional dinner for our entire family. The cooking went well with no flames, smoke, or detectors frantically beeping. The rest of the day was a success as well, but boy oh boy, that night I was burnt toast! There was not one part of my body that was not screaming with some sort of pain. However, I was very proud of myself that I was able to accomplish such a grand task...and survive! 

 

My grandmother sadly continued to decline and with the beginning of December she passed away and moved on to become one of heavens finest angels! Our families’ hearts were saddened but filled with numerous joyous memories. With many things to do related to a family member passing, stress was high and I was forcefully pushing my body to function on pure adrenaline and faith! A week of rest and then surgery was on my schedule. In my opinion the surgery to have my old PORT taken out and my new one put in could not come soon enough! The next day my infamous PICC line was pulled (YAY!!!) and two days later was Christmas Eve! After January third, when I go back to my surgeon to get my stitches removed I am here by allowing my body to take a great sigh of relief and function at the lowest state possible in order to stay alive. 

Even with all the stress, sickness, pain, and staying in one big perpetual rush I wouldn’t change the way anything took place. I was able to spend quality time with my grandmother and I surprised myself by achieving things I wouldn’t have otherwise attempted. 

Sending you all the best of wishes and having faith that you had a Merry Christmas! 

True meanings...

When the holiday season comes around I am always filled with mixed emotions. As a child, before I was sick, I loved the holidays! Thanksgiving was filled with rituals of getting up early to watch the parade on tv and going to my grandmother’s house for a wonderful feast with family. And the day after Thanksgiving was the day to break out the Christmas decor and deck the halls while blasting the Christmas music! Christmas was much of the same with an additional Christmas Eve dinner at my other grandmothers then waking up at 4 am and screaming for my parents to wake up so we could go see our presents. Now, even though I still love the holidays and the sense of joy they bring, they also bring stress. I have not been able to enjoy a holiday dinner for several years and for the past few years the sheer smell of meat sickens me. Now I lay in my dark cave of a room until the dinner is over then I join the party, most often clothed in my newest pair of pajamas. In the end however, thanksgiving is not about the fancy feast. Thanksgiving is about being able to spend time with your family, friends, and love ones while acknowledging the small things in life that usually go unnoticed. I am forever grateful for my family, friends, state of health (be it as poor as it is, it could be worse) and even the small things like my cozy pajamas, my homemade organic applesauce, and my dark sunglasses. So be thankful for whatever you have, as small or grand as it may be!

PORT’s, PICC’s, & Problems!!!

When it comes to things being inserted into your veins, such as PORT’s and PICC lines, I’ve been around the block a time or two... dozen. I first got a PICC line when I was 17 for IV antibiotic infusions. I should have known then when it took the poor vascular technician two hours to attempt to put one in, then fail, that my body didn’t like to cooperate with them.

On Halloween my 3^rd PORT started giving me major issues. It had been acting very finicky for a week or so, but by that Monday it had completely stopped working. After attempting to fix it three times throughout the next week with drain-o for human veins, my surgeon gave up. So Wednesday the 2^nd I had PICC line #8 put in. Luckily I got the same guy that had put my last PICC in so he knew I was trouble. After two failed attempts he finally got one in and working. Then the next day it quit. I know my blood is thicker than maple syrup and all my previous PICC’s have short life spans but this was ridiculous. Back to the hospital I went. When I got there they told me they knew I would be back because the chest x-ray showed that the PICC line was curled up at the end, but the stupid radiologist that read the x-ray said it was fine and they have to listen to him. Idiot radiologist! I really have a grudge against most radiologists I know. They did another x-ray and fixed it. Then the next day it messed up again. UGH! I was really annoyed by this point. So they assumed it was a blood clot and sent me to have an ultrasound of my arm. 

The guy did his thing, made my arm hurt like crazy then said “I didn’t see anything but I think I cleared it up for you. You can leave now.” I was confused. He didn’t see anything but he fixed it? I went and tried to flush the line to see if it would work and I got it to work. This was crazy! Went home did my nightly infusions, got up the next morning to do my morning infusions and bam... the dang thing had quit again! I knew it wasn’t me, so I came to the conclusion that this was the PICC line from Hell! I messed with it for a while and got it to where I could flush one of the lumens so I did my infusions anyway. Throughout my infusions my arm burnt like gasoline was being poured into my veins and started to swell. I kept it working even though it hurt. 

My nurse came a few days later and I told her and she said “You and me both know it isn’t supposed to burn and make your arm swell.” So I told her I thought the line was infiltrating some and she agreed. Thank goodness it wasn’t just me losing my mind. Even though it’s the most annoying PICC I have ever had (well except the one that would randomly ooze blood out of the insertion site all the way down my arm) I have to admit I am impressed it has stayed alive this long. 

Now I am trying to overcome the pneumonia so I can have PORT #3 removed and PORT #4 put in. Since I become attached to these things, in a literal sense, I usually name them. PORT #3 was Piper, therefore request of names for #4 will now be accepted. I’m thinking Paco or Charlie.We'll see how it goes. Hopefully I will be welcoming PORT #4 sooner rather than later!

My (Chiari) Story

... the short version

When I was 17 I started seeing a neurologist due to some of my symptoms. I believe it was a year after I began seeing him that he ordered an MRI of my head and neck after I had severe neck pain. It was then that he discovered that I had Chiari Malformation. He explained that it is a birth defect of the brain stem and that it could explain several of my symptoms. Baffled as I was to have yet another diagnoses added to my list I was somewhat relieved to have perhaps another answer to my problems. More answers more options to fix them, right? My mother and I were both however pissed off (to say the least) that no doctor before had discovered this in one of the previous 12 or more MRI’s I had had. My neurologist told us to seek out the help of a specialist, so we did. 

Back to New York, this time for a duo doctor visit, LLMD and Chiari Specialist. Previous to the Chiari appointment I had rigorous MRI’s and CT scans and one kind of scan that I have forgotten the name of but it took very realistic pictures of my skull and spine. It was very cool; I still wish I was able to have kept those pictures. We saw two specialists; the brain surgeon and the neurologist guy. The surgeon told me that Chiari was causing 90% of my symptoms and that surgery could fix them all. 30 minutes later the neurologist came in and said that the Chiari could be causing some of my symptoms but that he couldn’t be sure. He said that surgery could be somewhat beneficial or make the symptoms worse. So that visit was completely contradictory. I was more confused when I left than before I went in! So I basically put the Chiari thing on the back burner until a year later. Then I found a new Chiari specialist that I heard great things about, so I gave him a chance. Plus he was in Colorado, and even though I was going to spend my entire life savings on this doctor’s trip I was completely stoked that it was in Colorado! And this doctor was awesome, I loved him! He said that a large portion of my symptoms could be from the Chiari and that he felt that surgery would be beneficial. He correctly identified that I had syrinxes in my spine and that I also had spina-bifida and could possibly have tethered cord syndrome. However during his visit I also saw a nutritionist and with all of my digestion/ stomach issues the doctor said that I would have to be able to consume a certain amount of calories per day and keep them down before he would ok the surgery.

So I am still trying to fix my gut issues first. Even though I am now experiencing new Chiari symptoms and am leaning more towards having the surgery I have to get my gut in working order first. So just like my Lyme journey, the Chiari journey continues on as well. Just another adventurous chapter to add to my life book, that will hopefully one day in with a ‘happily ever after’ ending.... and not a huge cliff hanger. Dun dun dun!!!

My (Lyme) Story

...the short version

In September of 1998 my mother noticed that I was not acting like my vivacious self. I was the type of kid that ran outside the minute I got home from school and played in the woods until I was forced to go inside. I never noticed myself, until my mother told me many years later, that I had begun being much more fatigued and experiencing flu like symptoms. I injured my right knee in gym class one day and from then on I have experienced severe knee problems. That was just the beginning.

I went through doctors telling me I had Juvenile Rheumatoid Arthritis, Lupus, Fibromyalgia, to being crazy and having countless other diseases all to go through the treatments for each aliment then when it didn’t work the doctors would simply say ‘well I suppose it isn’t that’.  

After traveling up and down the entire east coast seeing doctors perched on ivory towers for 8 years, spending thousands upon thousands of dollars I finally found a doctor that was willing to give me a chance. 

I vividly remember my first visit with him. I went back into the exam room with a white board on the wall. He told me to tell him every symptom I had as he wrote it on the board. Once he was finished he stepped back to look at the cluttered board and said “You can’t have all of these.” My grandmother that was accompanying me on the visit said “But she DOES!” Then my doctor said words that he has surely lived up to over the past 5 years; “I won’t be able to figure this out on my own, but between me and God I will find out what is wrong with you”. And he did! Not a month later he CORRECTLY clinically diagnosed me with Late Stage Lyme Disease.

Oral antibiotics were my first route of treatment. I did those for about 6 months until my stomach completely shut down and I was no longer able to keep anything down, pills or food. This was the time I met several people my age on Facebook that also had Lyme. They were genuinely concerned about my declining and encouraged me to see an LLMD. Then the next summer, after being off of Lyme treatment and not eating any solid food for months I was forced to be put in the hospital due to severe malnutrition and dehydration. I ended up getting a feeding tube to give me long term nutrition. Three surgeries, one J-tube, one PICC line, and 21 days later I got to leave the hospital. It was certainly not the way I had planned to spend my summer. I guess blessings do come in disguise though because due to the infections I obtained during my first surgery I was put on high dose IV antibiotics, which was killing two birds with one stone, the infection and the Lyme bacteria.

After convincing my parents that seeing an LLMD was the right thing to do and finding a Lyme doctor I could afford, my local doctor agreed this would be the best next step. 

Off to New York I went. The trip itself was a treacherous two day drive but even in my state of crappiness I couldn’t help but to be excited to see New York for the first time. As I lay on top of pillows and comforters in the floor of our car I looked out the window up at the top of skyscrapers. The first appointment with my LLMD was not that encouraging, although I did find relief in the fact that he was convinced I had Lyme. He told me it was essential to eat food even though it caused me discomfort. Easy for him to say I thought. He ordered blood test through Igenex, which came back confirming that I indeed did have Lyme, plus some nasty co-infections to go with it. A few months later I got Mono and became even more ill. 

Now...3 PORT’s, 8 PICC lines, and 4 years later I am still continuing my IV antibiotic treatments along with IVIG treatment.  I am unfortunately no longer seeing my LLMD simply because I became too complex for him to handle. In these past 5 years since I was diagnosed with Lyme I have also been diagnosed with POTs, tachybrady-cardia, Gastroparesis, Chiari 1 Malformation. Hashimoto’s Thyroid disorder, polymyositis, dermatomyositis... oh crap, there’s other stuff I just can’t remember, I guess that shows that memory loss should be added to the list. 

Right now I'm kind of at another dead end as far as finding a new treatment plan that I can withstand and afford. Hoping another open door will be presented to me sometime soon. As of now I'm doing my best to get ride of all my secondary infections (pneumonia, kidney infections) and treating 2 of my new diagnoses that can benefit my Lyme as well. 

So my Lyme journey continues on and although there may be deep valleys to travel through I will journey on to find health and greater happiness in life.

Still Alive

When I first began creating this blog I wondered how long it would be before my inconsistency kicked in. Obviously it didn’t take too long; however I feel I have the right to blame some of my wavering procrastination on my Chronic Illness. After all, everyone who has ever been sick knows that feeling like death warmed over is an automatic excuse to neglect the living world and rekindle your friendship with your bed and television. 

Being sick for prolonged periods of time certainly takes its toll on you in several ways. The frivolous luxuries such as going out with friends are retired and you become very aware of what is truly important. Then you separate what is truly important (family, friends, health) from what is absolutely necessary in order to survive day by day. Some days the to do list is as simple as; take medicine, drink water, pee (if a must). Procrastination becomes your worthy companion that you become dependent on, and that is perfectly ok with you. So here’s to surviving while fighting for a healthier self... and attempting to revive my deteriorating blog in the process!

Keep wishing for those stars, and one day one will fall just to make your wish come true.

The Show Must Go On!

Act: 1 Scene: Infinity

When it comes to playing the role of a lymie the curtain is never called. The show is never over because this is no show, this is life. Living with Lyme is a 24/7 job, definitely not a part time gig. Living with Lyme does involve acting sometimes, for me at least. Before I was correctly diagnosed doctor after doctor after psychologist told me straight to my face I was faking being sick for the attention and that I needed to stop doing “this" to my parents. Well obviously they were all idiots. However this caused me to become a very introverted person and I forced myself not to show how bad I felt or how much pain I was in because I didn't want my parents to be mad at me or think I was making myself sick.

Still today I have taught myself to deal with my pain so that I don't cry (after all crying only makes you hurt worse) and I put on a smile and silently grimace through the pain when I have to act like a living human being. Sometimes the show just has to go on! This isn't always the best thing to do because pushing yourself usually leads to a huge crash and burn, in my experience at least. 

In my opinion all chronically ill people are award winning actors! The fact that we get up and take a shower some days without a huge dramatic sobbing and screaming in anguish scene is us acting our asses off. And to think that some lymie’s still keep full time jobs and take care of their families is amazing! Other people may not see how hard it is and appreciate our small accomplishments, but for us every mile stone is a big deal! We may complain from time to time but trust me, and I think all my other lymie’s would agree, if all we do is complain sometimes about how crappy we feel that is a huge accomplishment of not letting the disease and pain take over us! If we were perfectly honest about how we truly felt all the time we would be running around screaming bloody murder, then we really would get locked up in the crazy house. 

So to all my chronically ill actors and actresses, take a bow because you deserve a standing ovation! Keep fighting your fight because one day the curtain will draw to a close and the lights will be shining down on you to reward you for your great performances! You are all true stars living in the lyme light.

Ode to Friends: Friends Through Sickness and Health

Part 2

Younger people with a chronic illness often lose a lot of their friends after becoming ill. When you are no longer able to keep up with your friends at the same pace and take part in the things they do you begin to see less and less of each other. This is hard for a young person who is sick. Not only are we dealing with the physical and emotional stress of being ill but we also have to deal with our routines and environments rapidly changing. For those that become sick to the point that they are no longer able to go to school or work, they lose all social contact with the outside world. And I’m sure the friends do not intentionally neglect or ignore you, but they have busy lives and have to carry on. This is just life. 

So most often we turn to social networking to find new friends. I think this is a great thing because we are able to find people that are dealing with the same disease and issues through support groups. I highly recommend this! Some of the people I have met online that have Lyme Disease are now some of my closest friends. When you are young and going through a disease it is very reassuring to have a friend that is going through the same thing, it kind of reminds you that it’s not just you that’s this way. One possible bad thing about completely converting to social networking is that you tend to become emotionally invested in your computer and the people that live in it. (Trust me I’m not saying that’s entirely bad, nor do I mean that in a hypocritical way because that statement includes me.) I think it is important to get out and stay in touch with your ‘normal healthy’ friends as much as possible to give you a since of normalcy and stability. But for those that can’t get out of bed and are house bound the computer becomes your world. 

And when people begin to get better and are able to socialize more I think it is important to remember that you are different than your ‘normal’ friends. They haven’t been through an illness and they may not understand how to cope with that. So give them some time to get readjusted to the idea of you being back to normal. I think when we get so close to our Lymie friends we tend to forget that most people don’t understand what we mean when we talk backwards or blurt out a list of supplements we are on or how we can’t tell if we are herxing or dying. 

So don’t completely give up on your ‘normal’ friends if you kind of part your ways once you get sick, there are a few good ones out there. And if your friends have stuck with you through thick and thin, sickness and health, keep them around because they are few and far between. And if your friends have parted ways with you, don't worry. It may hurt for a while but they obviously weren't worth the effort. It's important for all friendships to be two-sided and not one. Everyone needs emotional support from friends at some point, so if your friends aren't willing to give you that in the time that you need it most (when you are sick) then heck with them. Don't let their negativity drain you, just move on to better and brighter friendships. 

To new and old friendships, may they always keep you bright and happy hearted and always reaching for the stars.