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.