"On A Scale of 1 to 10"

Doctor: "What is your pain on a scale of 1 to 10?"

Me: "Honestly, 47!"

Doctor: "Let's not be dramatic."

Me: ".....That's really an understatement...but I guess on your scale an 8."

          I hate when people ask me to rate my pain. Why, you may ask? First of all I think all chronically ill people that have constant pain hate this question and the vagueness that people associate with the irrelevant charts they show you with the smiley faces ranging from smiling to crying. On a doctor's scale of 1 to 10 my ten is not me crying with a frowning face, my "ten" is me blacking out because I'm in so much pain. So when people ask me to "rate my pain" I always answer "On your scale about an 8." I say 8 because to people who have not experienced pain, and don't deal with it daily they don't understand that what they may call an 8 or 10 is my 1, my constant. So to them an 8 is pretty bad. When to me, it’s an everyday, all the time, consistent annoyance.

          Secondly I find the answer that people are looking for much more complex than the broad question.  So what's the correct way to ask this question?

Doctor: "So we will go from head to toe. What type of pain are you having in your head and how bad is it?"

Me: "Let's see, the front of my forehead feels like someone is hitting me with a hammer, that's about a 6. Then there is the pain at the base of my skull that feels like a session of acupuncture that has gone horrible wrong and the needles are stabbing my brain. I'd say that’s a 7. Oh and the vibrating and the feeling like my brains been put in a blender, that is about an 8. Then there is my light sensitivity where everything looks like I’m starring into a flashlight, then the pressure and tightness in the back of my eyes like someone is squeezing my eyeballs as if they were stress balls, that’s an 8. Then there is the phone in my ears that no one will ever answer and the feeling that I’m scuba diving underwater, that's an 8 too."

Doctor: "......Umm, okay. Any neck pain?"

To go through the whole body, this process takes about 45 minutes on a good day. I know because I have literally thought through every part of my body that hurts and what I would rate it (on a doctor’s scale). Trust me, it takes a while. It is much faster to think about what doesn't hurt. That list is pretty short. Finger nails, eyebrows, eyelashes... some day’s that sums up that list.

Another question that I was recently asked related to the 1 to 10 pain scale is what is my Pain Goal? I had a new nurse that asked me this question and to her it was very routine but I had never been asked before and had difficulty answering. Me, either suffering severely from Lyme brain that day or just being completely oblivious had to ask her what she meant. She replied that if I could have my pain be lower than what it usually is what would it be? I said, which to me is an obvious answer, zero! Clearly my pain goal would be to be pain FREE. This was apparently not the answer she was looking for. She explained to me again that if my pain could be lower what would be a level I could tolerate. Well to this my immediate answer was; I am tolerating my pain level now otherwise I would be screaming and going insane. By this point I was clearly confused by the question and the nurse was not finding my answer sufficient so after about a 3 minute conversation of trying to explain to me what the term “Pain Goal” meant I gave up and said well I guess I five, just because I have no idea what you mean. So maybe this just isn’t a question for people who deal with chronic pain or maybe I am just endlessly confused. However my pain GOAL is zero... I find that logical! 

A much more realistic pain scale!

Riding the Dragon

January 1, 2012

In the Chinese zodiac the year 2012 is the year of the Dragon. I hope that isn’t any indication that this year is going to be a ‘monster’ to deal with. However, I believe in the phrase, “what will come, will come”! We just have to take everything for what it is and move on as best as we can!

May this year bring us all what we need, to each our own wish come true! To better health, happiness, and more love!

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!