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.

 

Ode to a Best Friend: Friends Through Thick and Thin

Part 1

In a lifetime one meets and forms bonds with quite an eclectic group of people. You may even be lucky enough to have several best friends throughout many years. But for some, friends are somewhat disposable as we grow older. I on the other hand have been abundantly blessed with a best friend that the word amazing is just not sufficient enough for. 

We met in the 3^rd grade through another friend one day after school and quickly clicked. Ironically enough we actually lived right down the street from one another. Through the years we have become more than friends, we are like family. Even though we didn’t always go to the same school, or live in the same town we always stayed friends. Connected at the somewhat sappy heart and overly witty sarcastic mind, we just couldn’t be separated. Today, over 12 years later we are still two peas in a pod. 

When it comes to true friends no disagreement, distance, or length of time will weather a real friendship. My best friend is a testament to all of that. We met just after I became sick, and through all the years of doctors and me being sick, she was always there. I think it is safe to say she is the only person that would come visit you in the hospital on your birthday, throw you a surprise party in your hospital room, and make you a play-doh cupcake because you can’t eat real cake! That’s a true friend right there! 

She has an amazing understanding of my situation and doesn’t judge or put me down because I can’t do all the things that other people my age can. Plus the fact that she is willing to drive an hour to come visit me, sometimes to just sit and talk to me says just how great she is. Most ‘friends’ wouldn’t go through the hassle of lugging a wheelchair in and out of a car and pushing me through a store, but her, she does it without saying a word. She is the one person that gets me being sick and doesn’t make me feel bad. She knows the sickness but she also knows me and never forgets that those are two different things! To say thank you for her friendship would never be enough.

So when you are having a down day in the dark always look toward your friends to lend you a shining star!