Julia is another North Carolinian Lymie. At 22 years old, people ask her all the time what it is like to live with Lyme Disease. She usually says, "Oh it's nothing really, just some joint pain and short term memory loss." The reality of it all is that it's hard to have a life with Lyme Disease.
Julia usually doesn't ever truly answer the infamous question of, "What are your symptoms?" Its' too hard to explain to someone that doesn't have it.
Some of Julia's symptoms are:
-Rashes all over body depending on time of year and current therapy
-facial muscle paralysis
-Arthritis in both hips, and hands/fingers
-tendinitis in arches of feet, and ankles
-severe depression, thoughts of suicide
-brain swelling, mostly in frontal lobes causing short term memory loss, and impaired speech
-dizziness, fainting spells
-blurred vision aka 'floaters'
There is a big portion of Julia's Lyme Disease symptoms. She doesn't always show those symptoms every day. Some days are good and some days are bad. Her biggest problem is her cognitive brain issues caused by Lyme Disease. She has many other symptoms that she didn't list because her list is so extensive the post would be extraordinarily long.
Since Julia was about 13 years old, she was extremely depressed. The mixture of Anti-depressants would spin her into a manic state when she was 16. At that time, she was diagnosed with Bipolar and ADD. She switched medications every 4 to 6 months because they would work for a while, but then they would stop. Julia was often threatened with "Holly Hill" (our local um .. crazy hospital) because of her cutting problem and how much she hated her life.
Finally during Julia's senior year of High School, her mother's friend suggested that Julia had Lyme Disease. This friend's husband and children had all been diagnosed with Lyme Disease and the friend swore that Julia had Lyme Disease. So after all the years of difficulties, they took a trip down to see the infamous Dr. J for blood tests. This was in August of 2004 and the blood test showed that Julia had Lyme Disease.
Julia says, "At this point, I was in utter shock, but at the same time, I was extremely glad to know what was really wrong with me instead of having doctors guess, and guess, and guess. I was still cutting, having stomach issues, and having to leave school early because I felt so awful."
A few weeks later, she found out that she would be getting a PICC line placed. She had to drop out of high school her senior year and Julia was on IV therapy for over 9 months. Her PICC was pulled out in May of 2005 and Julia felt wonderful. She was on no anti-depressants or anything related to a mood disorder. Julia was genuinely happy for the first time in probably her whole life. She would get sick and throw up after lunch for about 3 months, but that too passed.
She spent the summer, happy, and started back at a different high school and ended up graduating in 2006.
At the end of 2005, Julia began to feel that she was slipping back into Lyme since she wasn't taking oral antibiotics during that time. She went to Meredith College for 2 years and during those two years she still wasn't taking her oral antibiotics. She didn't know that not taking the antibiotics would wind up slapping her across the face. The summer of 2008, after withdrawing from 3 semesters at Meredith, her parents were fed up. Her mother took me to a specialist in New York City, who dealt with mood disorders and Lyme disease. He would be able to tell if Julia was really bipolar or if it was really Lyme Disease. She remembers talking to Dr. R, but it was kind of all a blur.
Three weeks later, her mother, grandmother and she flew back to New York to get some testing done. She was tested for two days and was told that she showed no signs of a mood disorder, an average IQ, good at reading, but bad at memorizing. She also got a SPECT scan done to see how much oxygen is reaching certain areas of the brain. Dr. R. called two weeks later saying that Julia had brain swelling especially in the frontal lobes. He suggested that she return to Dr. J and that she needed another PICC Line.
She did not want to get another PICC, but on September 12, 2008 she got her 2nd PICC line put in. She named it Trixie and she was only supposed to have Trixie for 4 months. After 6 months of IV therapy, Trixie was removed. Julia felt better, but it wasn't as big a difference as she had hoped.
There's Julia's story, her Lyme story. She's forgotten some parts. Julia used to think, "I can't do that because I have Lyme Disease." Now she's changing her point of view to "What can I do with Lyme Disease?" She's taking her oral antibiotics as best as she can. She still feels symptoms, but tries to ignore them and move on. Pretty much every friend Julia has knows that she has Lyme Disease, but none of them truly understand what it's like to live with Lyme. She doesn't expect th em to either. She usually hides her feelings and emotions to stop them from worrying too much. She says she can fake happiness like it's her job.
But the one thing Julia knows for sure is that even though she has bad days and good days, Julia's friends and family stick by her. She is thankful every single day for her family and friends. Without them, she probably wouldn't be here. So, even though she hides emotions and symptoms, Julia knows that she can talk to her friends and family when ever she really need to.
Please pray for my friend Julia and her mother. Her mother also has been diagnosed with Lyme Disease.
3 days ago