Tag Archives: narcolepsy

Rare Disease Day 2014

rdd-hd-banner2

Today is Rare Disease Day

What is a rare disease?

  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases touch children.

(Statistics from RareDiseaseDay.org)

While Lyme disease is NOT considered a rare disease, on my journey back to health, I’ve met not only other “Lymies” but those who struggle with many different chronic illnesses, including rare diseases. How many of you have heard of Neuromyelitis Optica (also known as Devic’s disease) or Cyclic Vomiting Syndrome (CVS)? I had never heard of these before I met individuals with them. Hearing their stories gives me hope and strength to push forward as I admire how they can do the same despite the odds.

I personally do suffer from a rare disease called Idiopathic Hypersomnia (IH) (or Primary Hypersomnia), which is believed to be caused by living with Lyme disease and other tick-borne diseases for many years without being diagnosed or properly treated. Of course this is very controversial and not known for sure. I also suffer from other sleep disorders like narcolepsy; narcolepsy is not considered a rare disease but affects about 200,000 Americans, which is close enough to be a rare disease. Whether or not these sleep disorders were caused due to being treated with tick-borne diseases years after initially being infected or for some unknown reason, it is extremely frustrated when so little are known about them. There is more information out there on narcolepsy than Idiopathic Hypersomnia but we don’t know what causes them.

So today, in honor of Rare Disease Day, take the time and learn about a rare disease.

Learn more about the cause too and visit rarediseaseday.org

“Rookie of the Year” Finalist!

I am SO excited to announce…

I am 1 of 10 finalists up for “Rookie of the Year” in the 3rd Annual WEGO Health Activist Awards!!!

(WegoHealth.com)

(WegoHealth.com)

First, I would like to say congratulations to all nominees and finalists! 

Thank you for all your hard work and dedication to helping others!

I am truly honored that I was even thought of to be nominated, not only for Rookie of the Year, but Best in Show: Twitter AND Health Activist Hero! Now I’m a finalist!?!?

I’m still pinching myself!

Thank you, thank you, thank you to each and every single individual who not only voted for me, but for being an essential part of my support system! Without all of you, I wouldn’t be here. I would have given up my fight a long, long time ago!

As I mention on my WEGO Health Activist Profile, I started Fight Lyme to help educate others by sharing my story, helping prevent the spread of Lyme disease and all tick-borne diseases. Not only did I not want to educate those through my website, social media, as well as going out into my local community, but to help individuals who are fighting Lyme to connect with one another. Helping people, I believe, can be some of the best medicine. Little did I know that they would be the ones who helping me.

I would also like to thank all those who make the WEGO Health network possible, creating an amazing online community to help others, as well as recognizing individuals for their hard work, and organizing the 3rd Annual Health Activist Awards! I know I would have a very hard time selecting finalists because every person nominated, deserved to be. There are so, so many great causes out there!

Thank you again so much again to everyone who nominated and voted for me!

Congratulations and good luck to all finalists!

 

Scars

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” – Rose Kennedy

Scars from 2 PICC lines and a midline

Scars from 2 PICC lines & midline

I’ll forever have these three scars on my arms

PICC Line vs. Midline

PICC Line vs. Midline

Two are from PICC lines (Peripherally Inserted Central Catheter) and the other, a midline.

Someone recently asked me what was on my arm, pointing to one of the scars. I casually responded, but today, I sat and reflected on not just the scars, but how they got there.

It is sad that sometimes I feel the need to justify being sick to others; hearing, “But You Don’t Look Sick…” is never something I like to hear, but at the same time, it’s nice to know I don’t look as horrible as I feel.

All that’s changed over the past 2 years, is that I no longer have an IV in my arm. When I had it, I “looked sick,” and didn’t need to explain to people that I didn’t feel well. Now that I don’t have it, I struggle with “the need” to prove to others I am sick; I don’t need to justify that I suffer from debilitating fatigue caused by Idiopathic Hypersomnia, a rare sleep disorder, as well as others like, Chronic Fatigue Syndrome, Excessive Daytime Sleepiness & narcolepsy (without cataplexy).

“In a perverse way, I was glad for the stitches, glad it would show, that there would be scars. What was the point in just being hurt on the inside? It should bloody well show.” ― Janet Fitch, White Oleander

Every day I continue to learn how to battle my invisible illnesses and let go of the fact that, people will believe what they want to believe; I don’t owe anyone an explanation.

When someone asks about my scars, I tell them I received antibiotics but then continue ask if they are aware of ticks and tick-borne diseases.

What I don’t say, is that the scars on my arms remind me, that I am brave, relentless and that I am a much stronger person than I was a few years ago; I’m stronger than I was yesterday.

They never have to know that, but I do.

“30 Things About My Invisible Illness You May Not Know”

The month of September is Invisible Illness Awareness Month and one week out of the month is Invisible Illness Awareness Week! Yes, I am aware it is now November, but I wanted to share this with you! We can spread awareness anytime of the year! Due to my invisible illnesses, I was not able to write this post, until now!

I learned about answering “30 Things About My Invisible Illness You May Not Know” through Christine Miserandino, the founder of But You Don’t Look Sick and The Spoon Theory!

Here are 30 things you may not know about MY Invisible Illness:

1. The illness I live with is: Lyme disease (and many more)

2. I was diagnosed with it in the year: 2002 (when I was 12) & was re-infected around 2008 (when I was 18 years old)

3. But I had symptoms since: Age 9

4. The biggest adjustment I’ve had to make is: Accepting and living with all the other illnesses/conditions I’ve developed from living with Lyme disease- worst of all my sleep disorders

5. Most people assume: You take antibiotics for a month and you’re fine. No one considers what happens when you have lived years with an infection in your body without it being treated- and that doesn’t mean more antibiotics will get rid of it either

6. The hardest part about mornings are: Staying awake/getting out of bed

7. My favorite medical TV show is: I don’t really have one, but I’d have to say House- because he can fix everything; Law and Order SVU is one of my favorite shows; even though it’s not considered a medical show, I love studying abnormal psychology, which is a big part of the show!

8. A gadget I couldn’t live without is: My nutribullet! I’m never hungry (as a side-effect of the medicine I take to stay awake) so breakfast, lunch and snacks throughout the day are usually in liquid form! Also my HEPA filter!!

9. The hardest part about nights are: Falling asleep, staying asleep; but more the fact that I’m not a normal 24-year old. I used to go out on weekends, now if I make it out to run errands is an accomplishment.

10. Each day I take: I’ve been able to cut down and only be on 4 prescriptions meds (at one point I was taking about 15), I take a lot of herbs/supplements/vitamins

11. Regarding alternative treatments I: I am a huge believer of alternative medicine, when it’s done right. I’ve had more positive outcomes from acupuncture, homeopathy, going to an herbalist/taking herbs, vitamins, supplements- but I like a combination of both worlds

12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. I have both, both come with their own struggles

13. Regarding working and career: I’m glad it’s more acceptable in society to be 24 and living at home with mom & dad. I’m not able to work or go back to school…yet!

14. People would be surprised to know: I’m in constant pain 24/7. I think I hide it pretty well. Also, I do not have a circadian rhythm

15. The hardest thing to accept about my new reality has been: eating healthy/following a strict diet! I haven’t had the best eating habits, but now I have to follow a strict diet; no sugar (maybe 1-2 servings of fruit a day), low carbs, high protein, no white flour (whole wheat, whole grains are okay); It’s complicated and confusing! Also not comparing myself to others- someone may be able to get up early, work all day, then come home, have energy to go out, go to the gym, or whatever, sleep for only a couple hours and be ready to do it all again the next day- I will never be that person!

16. Something I never thought I could do with my illness that I did was: Graduate college

17. The commercials about my illness: I don’t see any on TV (living in NY/NJ) but when I visit my boyfriend in Massachusetts, I sometimes see commercials there- but only advertisements about pest control for your home, not about Lyme disease.

18. Something I really miss doing since I was diagnosed is: Every day activities; being able to do them every day

19. It was really hard to have to give up: my independence

20. A new hobby I have taken up since my diagnosis is: social media; connecting with others who have Lyme disease and educating the public!

21. If I could have one day of feeling normal again I would: I would spend time catching up with family & friends

22. My illness has taught me: So, so, so many things! But overall, it’s taught me how to be a stronger person

23. Want to know a secret? One thing people say that gets under my skin is: “Oh you’re tired? You just need to get up, walk around, get some fresh air, drink some coffee, etc.” It doesn’t work like that and yes I’ve tried all those things! I’ve now been trying to manage my fatigue/sleep disorders for 5+ years!

24. But I love it when people: Understand what i’m going through- or even if they don’t, they try to understand, plus are honest that they don’t. It’s great when people listen and of course, when they are supportive!

25. My favorite motto, scripture, quote that gets me through tough times is: I have so many and always love finding more because they are so helpful to me! Some of my favorites are, ”The journey of 1,000 miles, begins with a single step” and…

The true miracle quote

26. When someone is diagnosed I’d like to tell them: It’s a long road. You can’t look ahead to see how far you have left to go because that will only exhaust you. Focus on today, but I also try to look back and see just how far i’ve gotten; also that they have overcome one of the hardest parts, being diagnosed/figured out what was wrong!

27. Something that has surprised me about living with an illness is: It’s possible to live with a chronic/invisible illness

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a card to let me know they were thinking of me; also, just listening and learning more about my invisible illness is so nice!

29. I’m involved with Invisible Illness Week because: My invisible illness, Lyme disease, is a growing, silent epidemic.

30. The fact that you read this list makes me feel: Happy!

Plato quote

Apple picture

My Story

When you’ve been fighting Lyme disease for over a decade, there’s a lot to tell;

This is my story…

My name is Stacie and I am 24 years old.

When I was 12, my life was radically changed by the single bite of a tick.

Thousands of people every year become infected with the Borrelia Burgdorferi bacteria, better known as Lyme disease. Many people are lucky and the disease is detected in its early stages, where it can be treated effectively with antibiotics. Others are not so lucky, living with the bacteria in their bodies for months, even years before a symptom appears. I wasn’t one of the lucky ones.

Read the shorter version here

I’ll never forget that morning in February 2002. When I awoke, I found my left knee extremely swollen and hot to the touch. I felt achy all over and overall not well. I told my mom that I must have gotten hurt playing basketball, which we both knew wasn’t true; I hated going to the doctors and was terrified of needles. After one week of limping around, my mom had to bribe me to go to the pediatrician; I think I had gotten the “BeaDazzler” and was able to leave school early to see the doctor. I remember arguing the doctor, even contemplated just making a run for it out the door, because he said he had to draw blood! Thankfully, it didn’t hurt!

I had seen the doctor on a Thursday or Friday afternoon since I remember them saying I would have to wait until Monday for the results- and to me that meant forever! That Saturday, the doctor left a message on the answering machine saying I had Lyme disease and some antibiotics were called into my local pharmacy. My dad was angry that the doctor had left this as a message on my answering machine, scaring the hell out of me (and him as well)- and of course being the weekend, there was no one at the doctor’s office to answer. (This was also before HIPAA was strictly enforced-you will never get these messages on your answering machines today; doctors will now give you [or if you are under 18, your guardians] a form where you can choose which phone lines they can call (ex. home, work and/or cell phone), if they can leave a detailed message or simply say to call the office back, etc.)

After hearing that message, I instantly broke down. I didn’t really know what Lyme disease was, I knew that you got it from a tick-but all I knew was that I had a DISEASE. I thought I was going to die; my dad has had Kidney disease my whole life and he was always very sick; He’s had some close calls too. But he is by far one of the toughest people I’ve ever known, so he could handle having a disease-I knew I was not nearly as tough as he was.

What I actually cared about more than dying (looking back on it I try and laugh), was that I was an awkward 12-year old girl in elementary school and kids were going to make fun of me. I suppose I could have approached it a different way, but I was young and scared; the kids teased me and stayed away from me-even though Lyme disease isn’t contagious; but I had a DISEASE and that made me weird. Another fear I had to face was taking the medicine; I never had taken any medicine except ones in a liquid form and was dreading having to take this massive size pill multiple times a day.

After 2 weeks on crutches, my knee finally went back to its normal size; I conquered the battle against the antibiotics ( I was taking Amoxicillin, however most people are prescribed at least one month of Doxycycline- except younger kids) and Children’s Motrin, fallowed up with my pediatrician, plus an infectious disease doctor & orthopedic specialist. They said I could have been bitten as early as age 9-all my symptoms pointed to the third stage of Lyme disease, often referred to as “Late Stage Lyme”. However, the doctor assured my mom and I that, “Lyme disease wasn’t serious and I had nothing to worry about.” The only repercussions I could experience was needing physical therapy for knee, maybe at 30 or 40 years old and some other aches and pains. I was relieved. I thought, when I’m 30 or 40, I’ll be old! Looking back on this of course, I laugh, thinking that these were old ages!

The pediatrician, however, had forgotten to mention (most likely because they didn’t know) that this was only the beginning.

Most doctors believe, that I would be bitten by a second tick and re-infected with Lyme disease & other tick-borne diseases. However, there is no way to tell if it was in fact a new infection or the same one, bringing back both old and new symptoms…

I was 18 years old and starting my second semester of college freshman year. Like any other day, I woke up and started to get ready for school— but when I looked in the mirror, I realized that this wasn’t going to be an ordinary day. I had bells palsy, which turned out to be bi-lateral bells palsy, and is not very common. I thought, “Could it be possible I had a stroke at such a young age- and it happened during my sleep?!” Before going to the doctor, I turned to the Internet and social media, tools I did not have when I was 12. After some research, I found many stories where other people had Lyme disease, were treated with antibiotics, but had developed complications years later. This would be where I started the long, uphill road back to health.

I took a medical leave from college and for the next 6 months, I went to every “ologist” in search of an answer;

I went to a pediatric neurologist, then an “adult” neurologist, cardiologist, rheumatologist, infectious disease specialists, and the list goes on. Along with the bells palsy, I had developed temporary paralysis of my arms & legs that would come and go, burning, numbness & tingling throughout my body, and many other neurological symptoms.

I was told by every single doctor nothing was wrong with me and that I should see a psychiatrist—most of all, they all emphasized, “IT IS NOT LYME DISEASE!” I figured if this many doctors are telling me I’m crazy, than I must be crazy! I started seeing a psychiatrist, started getting myself “back together” and managed to get accepted into Syracuse University and started in the Fall of 2008; (At this point, some symptoms had subsided, but many didn’t- but I kept telling myself they weren’t real); What’s ironic is that this doctor would save my life-after going to all these specialists who told me nothing was wrong, I had convinced myself every thing I felt was just anxiety; this doctor realized I not only had to learn how to acknowledge neurological and physical symptoms I felt, but I wasn’t crazy; I had Lyme disease whether it was a new infection or it was never properly treated in the first place, I needed treatment.

Shortly after I started school, I was hospitalized with bacterial meningitis

Only later would I find out that it was Lyme encephalitis and I had been exposed to Rocky Mountain Spotted Fever & other tick-borne illnesses. Within a week or two, I was released from the hospital and worried about catching up with my school work. The next few years I would struggle to stay in school, since I was sick all the time and constantly in and out of the hospital.

It was senior year of college and I had become even sicker. I should have taken a medical leave, but due to money (and the fact that I was worried the school would not let me return if I had left), I pushed myself to stay in school. I was now 22 years old and the only reason I got through school was that my psychiatrist help me find a Lyme Literate Medical Doctor (LLMD) over the summer. In June, I started receiving IV antibiotics and things were starting to look up; I was a senior in college, with a Peripherally Inserted Central Catheter (PICC).

PICC line surgery

The picture above is from 2011, where I’m getting one of a series of several PICC lines for IV antibiotics. I had one of the nurses take pictures for two reasons. First, I needed to document for insurance purposes (since Lyme is so controversial and there is no scientific evidence supporting that more than 28 days of antibiotics is beneficial for Lyme patients). Second, my school was extremely strict about absences, no matter how many doctors notes you had–so I figured a picture would have a bigger impact, showing what I was going through while in school.

Unfortunately, things did not go as planned. After 4 months, I developed contact and allergic reaction dermatitis; I now had become allergic to rubbing alcohol and all adhesives, (even paper tape), from the constant exposure. I had no choice but to remove the PICC line so I did not develop complications, specifically endocarditis (infection of the heart). I was devastated but convinced I could finish my treatment of IV antibiotics.

Just me & my PICC line

I waited for my skin to clear up, gave it time to heal and about a month later underwent surgery to have another PICC line put into the opposite arm. To my surprise, I developed the same allergic reaction, this time it only took 3 days. Again, I knew it was not worth the risk, and had it removed. I was only able to complete 4 months of my estimated 8 months-1 year of treatment. However, I did feel better and my lab work did show improvements.

A few months later, however, my labs showed that I was (once again) positive for Lyme. In fact, I still met the CDC standards for the diagnosis of an active Lyme infection and always have since I was first tested over a decade ago. Many people do not test positive but still have Lyme disease and/or other tick-borne diseases, since the testing is inaccurate. I decided no more antibiotics, which I later found out was a good decision, since they only killed the good bacteria and made my immune system weaker (in my case).

Once I somehow made it through school, even though it meant pushing myself to the extreme, causing me to become physically ill and mentally drained…that was it. I was sicker than ever because my body could only compensate for so long; it took a long time for me to recover from the 4 years of stress I endured to graduate from Syracuse University, never having the summers to rest because I went to summer school (being sick, I always took the minimum amount of credits each semester, which I could barely handle)!

So here I am. I’m a college graduate, unable to go back to school to fulfill my dream of becoming a Nurse Practitioner, or have a job because the illnesses and conditions I’ve developed from the bacteria affect my everyday life and are often debilitating. Over the years, doctors have diagnosed me with everything from Lyme Arthritis, Fibromyalgia, Hashimoto’s Disease, neurological symptoms such as anxiety, “Brain fog” but worst of all, Excessive Daytime Sleepiness (EDS), Chronic Fatigue Syndrome (CFS), Idiopathic Hypersomnia (IH) and narcolepsy (without cataplexy). I’ve lost count of how many antibiotics, medications and therapies I have tried over the years, all of which have been largely unsuccessful. With my father being a kidney transplant recipient & fighting cancer, my mother working to support the family, but in constant pain after two hip replacements, the cost of medical expenses has had a significant impact on our family. I’m not eligible for unemployment, disability, temporary disability (which is funded by the state), you name it-I am completely dependent on my parents. I began to lose hope of ever being able to live a somewhat “normal,” healthier life, but deep down inside, I knew I was not ready to end the fight against Lyme.

My goal, is not only to be Lyme-free, but to be able to share my story. While my story has been extremely personal and difficult to talk about, my only regret is not sharing it sooner; there are thousands of other people who have their own story and millions more are at risk. It is essential to bring attention to the need of educating the public about this growing epidemic. Not only do I want to educate others about Lyme disease, but to also remind each other we cannot judge others, especially when it comes to apperances. I continue to struggle with being told, “…But You Don’t Look Sick,” because even though I may not look sick, doesn’t mean I’m not- this led me to become a strong advocate for all invisible illnesses too.

 Spreading awareness by publicizing my story, I feel, is the greatest contribution I can give.

Helping others can be some of the best medicine