Flare-up!

     Well it looks like I am getting another flare-up. It's been almost a year since my last, but I'm certainly not looking to start a new one! I don't have health insurance and there is a list of medications and procedures I need to have to help me feel better. I can hardly function when I get sick. My migraines get so out of control that I can hardly get out of bed. I can't keep food down, sometimes for months at a time. I get seizures in my temporal lobe, sometimes multiple times a day. Most of my body hurts. I am always exhausted, even if I don't get out of bed. It is ridiculous!

    I have a life to live! I work all day then go to school at night. At the end of the summer I will be going to school full-time once again. I need to be able to do all the things I need to do. My schooling has already been greatly affected by this disease. I barely graduated high school, I missed so much! I'm going to cosmetology school and it has taken me almost twice as long to finish because of my illness. I'll be moving in with my boyfriend soon. I don't want him to see me sick and miserable all the time. Thank God he is so supportive! 

    I kinda just needed to vent a bit. I'm doing all the research I can to find some things that may help me feel better since I don't have access to the medicines I need. Through this I have found so many support systems for Lymie's like me. I even discovered that there is a support group that meets once a month just ten minutes from my house!  I'll definitely be checking that out. It can get very frustrated, and it's tempting to just give up, but I'm going to fight to stay on top of this. No matter how had it is.

Until next time...

     

    

Living with Lyme

     When I was five years old I went camping with my mom and her friends in Connecticut, where we lived. At some point during the trip I was bit by a tick in the back of my neck. After returning home my mother was bathing me when she noticed only the tick's little tiny feet sticking out. She quickly removed it with the burnt end of a match and kept her eye on it until it healed.

     Fast forward 14 years. I am now 19 yeas old, I live in Utah, and I have finally been diagnosed with Chronic Lyme Disease. I have had various health problems over the years that never seemed to make sense to anyone. Lyme Disease really is not a common illness in the west. A couple of months before I finally sought out those doctors, there was a small outbreak in Spanish Fork Canyon. Many physicians were emailed a list of symptoms and what to do if a patient was showing them. Had that outbreak not taken place, who knows if they would have finally figured it out! A definite blessing is disguise. 


     When I was a little girl, I always had bladder troubles. Embarrassing, I know. I seemed to ALWAYS have Urinary Tract Infections (UTI). Eventually my family sought out a Pediatric Urologist. Unfortunately there is only one of those in the state of Utah, and he was not of great help to me. I am almost 20 years old and I still live with bladder infections and my bladder is different than most.


     When I was just about 17 years old I had not started my menstrual cycle and did not understand why. I knew many girls stated later than others, but 17? I went to a doctor to find out why. After some tests they discovered that my uterus and ovaries were atrophied (a wasting or decrease in size of a body organ, tissue, or part owing to disease, injury, or lack of use). The doctors weren't sure if they stopped growing at some point in time, were very slow at maturing, or if they were shrinking. They started me on birth control to try and kick start my cycle. All the birth control did was make me feel icky all the time. Luckily, I started about a year later, which is a good sign that they aren't shrinking.

     A major sign of a flare up is not being able to keep any food down. In the beginning, I always felt sick after eating anything. Eventually, it got to the point where I would throw up everything that I ate. Gross! Honestly, I'm not quite sure why that happens, or what makes it better, but it eventually subsides.

     During one of my many doctor's appointments (I'm not sure which one, they've kind of all morphed together) they were performing the usual tests and discovered that my heart beat was not quite normal. They performed an EEG and I was diagnosed with a Heat Arrhythmia. Nothing serious, my heart beat is just a little bit different than the Average Joe's. http://www.mayoclinic.com/health/heart-arrhythmias/DS00290


     A major issue that brought me to the doctor's in the first place was migraine headaches. I go through periods of time where they will just not go away! The day they did the test that diagnosed my heart arrhythmia, the doctor looked behind my eye to see if he could figure out the cause of the migraines. He didn't really say anything and moved on to other tests. He called me later that night with a concern he had had throughout the remainder of the day. Apparently I had quite a bit of swelling and he was worried about what was causing it and advised me to go to an E.R. to get it checked. Hearing that it was bad enough to go to a hospital definitely scared me, so I went. I waited for quite some time, but was finally seen. The E.R. doctors were quite skeptical about me needing to be there in the middle of the night, but still called in a neurologist. After testing they discovered that I have Pseudotumor Cerebri. It is basically a build-up of pressure in the brain that causes migraines, vision problems, nausea, hearing problems, etc. Luckily, it is not actually a tumor. After it was confirmed by MRI, I was sent for a Lumbar Puncture (Spinal Tap) to relieve the pressure. It was definitely the most painful thing I have endured in my life, but the migraine's have stopped! Also, I no longer have to wear glasses since all that pressure has been relieved. A definite plus! http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001391/


     Another problem I have with my brain is Temporal Lobe Epilepsy (TLE). I always thought I was crazy. Since I can remember I have always had the strangest episodes of what I thought was Deja Vu. Out of nowhere the scene around me would change. I felt very strongly that I had experienced that moment before. My vision was almost blurred, I would become very nauseous, I couldn't breathe well, my ears would start to ring, I would hear voices and I couldn't speak. After a few seconds it would just stop. It always bothered me greatly. Is that what everyone experienced when they had Deja Vu? Not at all. I was actually having a seizure in my brain. I still don't know a lot about TLE, but I now know that I am NOT crazy. It's just yet another part of my body that has been affected by Lyme Disease.
http://www.epilepsy.com/epilepsy/epilepsy_temporallobe


     It has been almost 15 years since I was bit by that tick, yet I am reminded of it every single day. Although the Lyme is no longer "in" me, it has changed my body for good. I am still no expert, but I will still do what I can to educate myself on this horrible disease and make sure that I stay healthy.


Until next time.....

     
     


     

Life at the Moment

Where to begin.... There is rarely a dull moment in this life of mine. 


I live in Riverton, UT. Why? Good question. 

At the moment I live with my mother and four little sisters. Yes, they are all girls. Yes, there are four of them. And yes, we all squeeze into a three bedroom townhouse. It is never boring! 

 Mom

 Brynn, 13

 Charly, 11

 Cara, 6

 Ali, 4

My dad lives in Las Vegas with his girlfriend, Ester. I didn't meet him until I was 17 years old. It's ok, because now we're really close! Just recently I met his mother for the first time. She was super sweet! As soon as I can, I would love to meet his other daughter/my half sister, Sam. Isn't she beautiful?

 Me, Dad and Nana Rose at Hoover Dam.

 Sam, 13

I go to Paul Mitchell the School in Salt Lake City. I definitely go to the best cosmetology there is. I love everyone there. As soon as I am finished I'll go to a different school with more of a focus on makeup. That's where my real passion is!

I have the greatest boyfriend! His name is Nick and we met in a high school astronomy class. I guess you could say it was in the stars! ;) 

 Nick and I at Grillfest 2011

I suffer from Chronic Lyme Disease. I was bit by a tick when I was five years old. I have had various health problems since I was a little girl, but the Lyme Disease was not diagnosed until I was 18 years old. Things have definitely been difficult, but I'm alive so that's all that matters! 

I'm not sure how great I'll be at keeping up with this, but until next time...

PEACE & LOVE!