Meme for Invisible Illness Week coming up in September.

30 Things About My Invisible Illnesses You May Not Know

1. The illnesses I live with are: fibromyalgia, Lyme disease, irritable bowel syndrome, Hashimoto’s thyroiditis, Addison’s disease, osteoporosis
2. I was diagnosed with them in the year: 2005
3. But I had symptoms since: 2000
4. The biggest adjustment I’ve had to make is: pacing myself and taking lots of meds.
5. Most people assume: I’m lazy, antisocial, or that there’s nothing really wrong with me. Or they treat me like I’m going to break. Or I’m just a picky eater.
6. The hardest part about mornings are: getting up and moving if I haven’t slept well or if I’m stiff/sore.
7. My favorite medical TV show is: House, MD for the snark and (mostly) factual info. Grey’s Anatomy for the drama and interesting cases. Royal Pains for the MacGuyver-esque medicine.
8. A gadget I couldn’t live without is: my heating pad. I have one at home and one at work. And iCal to keep track of my schedule/dr’s apppointments/work/etc.
9. The hardest part about nights are: finding a comfortable position where nothing hurts.
10. Each day I take __ pills & vitamins. (No comments, please): 2 pills before breakfast, plus 10 drops of antibiotic in a 4 oz glass of water. 7 pills after breakfast, plus a drop of Vitamin D supplement in a glass of water. 1 tablespoon of fiber supplement with breakfast. 10 pills with lunch. 3 pills after lunch. 7 pills before dinner. 14 pills plus a drop of Vitamin D supplement in a glass of water before bed.
11. Regarding alternative treatments I: think some are viable and am willing to try, but have to research and consult your doctor first, especially with multiple illnesses and meds like me.
12. If I had to choose between an invisible illness or visible I would choose: invisible. I hate the pity looks and kid gloves when my illnesses are visible (when I use my cane or take my meds in front of people who don’t know me).
13. Regarding working and career: I love my lab and the area of research I’m in, but working one night a week is rough on me health-wise.
14. People would be surprised to know: it’s never something you get used to, though you learn to live with it. And I don’t miss eating meat.
15. The hardest thing to accept about my new reality has been: I will be taking meds and seeing doctors regularly for the rest of my life.
16. Something I never thought I could do with my illness that I did was: work full-time. Walk around the San Diego Zoo all day (over 20,000 steps according to my pedometer!) and not be in pain the next day.
17. The commercials about my illness: annoy me, since they’re all middle-age women and make the meds seem like magic cures.
18. Something I really miss doing since I was diagnosed is: eating out without having to scour the menu to make sure there is something I can eat first.
19. It was really hard to have to give up: dairy. I miss ice cream and cheese. Rice cheese, sorbet, coconut ice cream, rice milk ice cream, it’s just not the same.
20. A new hobby I have taken up since my diagnosis is: baking!
21. If I could have one day of feeling normal again I would: relish not taking any meds. Eat strawberry cream cheese on a bagel. Eat out and not look at the menu first. Eat cheese! Eat a salad. Have ice cream. Have a smoothie. Have a cappuccino with whipped cream.
22. My illness has taught me: how to be less type A personality and not be as uptight about everything. How to relax.
23. Want to know a secret? One thing people say that gets under my skin is: what do you eat? How are you healthy with all the things you can’t eat. Don’t you miss eating XYZ?
24. But I love it when people: don’t make a big deal about my dietary requirements.
25. My favorite motto, scripture, quote that gets me through tough times is: live, laugh, love.
26. When someone is diagnosed I’d like to tell them: make sure you have a good relationship with your doctor. It’s one of the most important relationships in your life except with your spouse and family.
27. Something that has surprised me about living with an illness is: how prevalent invisible illnesses are, and how supportive people can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: love me and take care of me. Invite me to things even when I’ve had to say no in the past.
29. I’m involved with Invisible Illness Week because: it’s something that deeply affects me and will affect me for the rest of my life. So people should be aware of it.
30. The fact that you read this list makes me feel: happy I took the time to do this meme

Day Zero list #66!

1. I graduated from a magnet, gifted, college-prep high school with above a 4.0 GPA.
2. I was a founding member of said high school’s robotics team.
3. I was the student leader of the robotics team for 2 years.
4. I was a mentor for the robotics team for a year.
5. I was a volunteer for FIRST Robotics for 10 years.
6. I did over 300 hours of community service in high school.
7. I was in the honors program in college.
8. I got my first (and second) co-op jobs on my own, without the help of the college co-op office.
9. I double majored in biomedical and electrical engineering.
10. I graduated from college cum laude.
11. I graduated with a masters degree in neuroscience.
12. My freshmen design team and I won best undergraduate presentation at the Southern Biomedical Engineering conference as sophomores.
13. I married my best friend who is the love of my life.
14. I am financially independent of my parents.
15. I have a job in the field of research I love.
16. I am a moderator on BYDLS.com, and have been for several years.
17. I was a co-host of a successful bicoastal all female tech podcast (Girls Gone Geek).
18. I am the city organizer for a successful non-profit, all volunteer fundraiser (Twestival).
19. I have lived with/fought/survived chronic illness for over 5 years.
20. I was the photographer for the Virginia Orchid Society for a little over a year.
21. I have a great relationship with my mom.
22. I’ve traveled to Turkey and London.
23. I’ve fired a gun.
24. I took 5 years of Latin between middle and high school.
25. I took 4 years of German in high school.
26. I took a year of American Sign Language in high school, and it’s been the most useful language besides English I’ve learned.
27. I was on the Battle of the Brains team in high school.
28. I was on the German Battle of the Brains team in high school as well, and we won at German Convention one year.
29. I’ve met Dean Kamen and Woodie Flowers.
30. I’ve volunteered with Dave Lavery.
31. I’ve had a letter published in the editorial section of the newspaper (Richmond Times Dispatch).
32. I’ve been on the local news (for FIRST Robotics).
33. I’ve been a judge for FIRST Lego League.
34. I maintain my own blog (quasi-self-hosted).
35. I maintain my own website.
36. I have seen a show on Broadway.
37. I had a wedding that was reflective of my husband and I and our beliefs.
38. I’m a card carrying member of MENSA.
39. I’ve been to an amusement park and ridden roller coasters.
40. I’ve witnessed kittens being born.
41. I’ve gone to a drive-in movie theater.
42. I’ve ridden a horse.
43. I’ve helped out family members expecting nothing in return.
44. I’ve helped out friends expecting nothing in return.
45. I have friends I can count on in the good times and the bad.
46. I can sew using a sewing machine.
47. I can also sew by hand.
48. I can cross-stitch.
49. I can bake.
50. I can cook.
51. I was in a co-ed performing arts fraternity in college.
52. I was elected chapter representative and secretary (in two different years) in said fraternity.
53. I won an alumni scholarship for my last year of college.
54. I witnessed my grandmother almost die from her liver shutting down due to alcoholism when I was 14. It changed me, but for the better.
55. I’ve done a poster presentation at an international conference.
56. I’ve attended the Society for Neuroscience meeting, the largest scientific meeting in my field.
57. I’ve traveled by myself.
58. I’ve taken a medical school class (Intro to Neuroscience).
59. I’ve seen a show at The Globe.
60. I have two healthy, happy cats.
61. I’ve had a boa constrictor around my neck.
62. I’ve lived on my own, without roommates.
63. I can ice skate.
64. I can roller skate.
65. I take great pictures of kids.
66. I have more than a basic knowledge of carpentry.
67. I also have a pretty decent knowledge of hardware and power tools.
68. I can play a few basics on the harp.
69. I can do multivariable calculus.
70. I’ve been to the Apple campus in Cupertino.
71. I’ve taught a range of kids, from kindergarten to freshmen in college.
72. I’ve survived having my life plan completely changed by failing my prelim exam twice.
73. I’ve seen all 6 Star Wars movies.
74. I designed my own save the date cards, invitations, and programs for my wedding.
75. I’ve designed handouts for a few tech/entrepreneur events in Philadelphia.
76. My master’s thesis.
77. I know how to solder.
78. I also know how to wirewrap a breadboard.
79. I’ve been a vegetarian for 10 years.
80. I’m one of the organizers for Podcamp Philadelphia.
81. I can write an IRB submission by myself in a few days, given that I know the study parameters.
82. I can perform most of the duties of the studies my lab does from start to finish myself, from (some) grant writing and study design to IRB submission to recruitment to running the study to data analysis.
83. I can and have made my own holiday cards for family and friends.
84. I’ve learned how to deal with working overnight and managing my illnesses at the same time.
85. I’ve been to therapy and learned that I actually deal with problems in my life relatively well and normally.
86. If I have the free time, I can read an entire book in a day.
87. I’ve seen the extended editions of all 3 Lord of the Rings movies.
88. I’ve read all 7 of the Harry Potter books.
89. I’ve read all 3 of the Lord of the Rings books, plus The Hobbit.
90. I’ve read all 7 Chronicles of Narnia books.
91. I’ve seen the ruins at Troy.
92. I’ve been to Disney World (twice).
93. I’ve been to Sea World (in Orlando).
94. I’ve been to Johnson Space Center.
95. I’ve figured spiritually what I believe in (and didn’t take into account what the rest of my family/friends believe).
96. I’ve been to the world’s oldest zoo (London Zoo).
97. I’ve been to the nation’s oldest zoo (Philadelphia Zoo).
98. I’ve been to both Busch Gardens (in Williamsburg, VA and Tampa, FL).
99. I’ve been to 3 POTUS houses – Mount Vernon, Monticello, and Ashlawn.
100. I’ve been to Jamestown, Colonial Williamsburg, and Yorktown historical landmarks.
101. I’ve learned to let myself be happy.

And now putting $10 in my savings account now that this goal is finished!

As I’ve mentioned in passing several times, I have quite a list of chronic illnesses. At the end of my junior year of high school, I was bitten by a brown recluse spider, one of the only two types of poisonous to humans spiders. I had a hard, purple indentation on the outside of my upper left thigh; I thought nothing of it originally. I was a busy student, and it didn’t hurt. My bus driver saw it the next day, since I was wearing shorts, and she recognized it as a brown recluse bite. My mom took me to Patient First that evening, and the doctors there didn’t quite know what to do with me. I ended up with a tetanus shot, giant antibiotic pills, and instructions to call a plastic surgeon immediately the next day. The plastic surgeon the next day said the antibiotics were like hitting a fly with a sledgehammer, so I stopped taking those. I spent the summer going to the plastic surgeon to have the necrotic tissue scrapped out every few weeks. I have a small round scar on my leg, that occasionally hurts because of some slight nerve damage.

When I started back at school in that fall for my senior year, I started having digestive problems. I’m not a big fan of doctors, so I just kind of dealt with it for several years. By the end of my freshman year of college, I was down to 85 lbs, and couldn’t keep much food in me. So I finally went to a gastroenterologist, who told me I have Irritable Bowel Syndrome (IBS), did some blood tests, and gave me a prescription for an anti-spasmotic for my intestines. About a year later, I was back up at college in Philadelphia, and was having horrid abdominal pains, and once again wasn’t able to eat much. I went to another gastro doc, who ran all of the invasive tests this time – abdominal and pelvic CT, endoscopy, and colonoscopy. She ended up diagnosing me with IBS again, and tried me on several different meds, each one just giving me nasty side effects. I got online, did some research, and started treating myself with peppermint oil capsules, soluble fiber supplements, and watching what I eat. I’ve still had flare ups, but I’ve pretty much been able to handle my digestive system ever since.

About six months later, I started having muscle pain in my shoulders and legs. I thought it was just because of my backpack and walking so far from my apartment every day. However, nothing I did made it go away, it just kept getting worse, and I was exhausted all the time. The message boards I was on for my IBS had several people who also have fibromyalgia, a frequently comorbid condition. They suggested I get checked out for fibro as well, as my symptoms sounded very similar and weren’t getting better. I went a rheumatologist who told me I couldn’t have fibro because I wasn’t depressed, which I knew was not a diagnostic criteria for fibro. Doing my own research online again, I found a fibro clinic just north of Philadelphia. I started seeing the doctor there the summer of 2005, and have been going there ever since. Even with all the blood tests other doctors had done, diseases had been missed. I was shortly diagnosed with fibromyalgia, chronic fatigue syndrome, chronic viral infections causing viral arthritis, Hashimoto’s thyroiditis (autoimmune hypothyroidism), Addison’s disease (low functioning adrenal glands, probably autoimmune), and a serotonin deficiency. I take a large number of bioidentical hormones, vitamins, and prescription pills, as seen above. The above picture is 1 day’s worth of pills for me. I have my blood tested every 4 months, when I can afford it, to check my levels of hormones, etc to see if my pills need to be adjusted.

I wear a medic alert bracelet every day, I have a collapsible cane when I’m having a bad flare, various braces, and heating pads to help with the pain. I don’t take any pain meds, they don’t work. I occasionally end up having to take a day off of work because I’ve done too much and I literally can’t get out of bed. I have to get 8 hours of sleep as many nights as I can, or else I get ill and flare up. Unfortunately, this can limit how much I can do sometimes. I’m usually pretty bad at saying no, and love doing as much as I can. Blogging, podcasting, and freelance voice work are all very illness-friendly tasks for me, which helps immensely.

A website I love, and am a moderator on is But You Don’t Look Sick. This wonderful website and forums is for people with chronic illnesses and their caregivers/family members, offering a wonderful, caring community of people who understand the frustrations of having a chronic illness (or multiple) and dealing with doctors and people who don’t think you look sick or think you’re too young to be sick, etc. Sunday, July 27 is the 5th anniversary of the site, and I took this photo in honor of it! One of the major cornerstones of BYDLS is The Spoon Theory, written by the site’s founder Christine Miserandino (now Donato) to help explain to other people how chronic illnesses like lupus, fibromyalgia, etc. affect a person and what they can and can’t do. So spoons are a big topic of conversation over there.

I have multiple chronic illnesses, and have had my fair share of adventures with doctors to get diagnoses, as well as having people tell me I don’t look sick or I’m too young to be that sick. I’m better than I was a few years ago; I have a wonderful doctor who has helped me treatment-wise tremendously and a wonderful boyfriend who cares for and supports me in any way he can. However, that’s no substitute for the fantastic men and women at BYDLS, who are some of the most caring, kind, understanding people I have ever had the pleasure of interacting with.

A website I love, and am a moderator on is But You Don’t Look Sick. This wonderful website and forums is for people with chronic illnesses and their caregivers/family members, offering a wonderful, caring community of people who understand the frustrations of having a chronic illness (or multiple) and dealing with doctors and people who don’t think you look sick or think you’re too young to be sick, etc. Sunday, July 27 is the 5th anniversary of the site, and I took this photo in honor of it! One of the major cornerstones of BYDLS is The Spoon Theory, written by the site’s founder Christine Miserandino (now Donato) to help explain to other people how chronic illnesses like lupus, fibromyalgia, etc. affect a person and what they can and can’t do. So spoons are a big topic of conversation over there.

I have multiple chronic illnesses, and have had my fair share of adventures with doctors to get diagnoses, as well as having people tell me I don’t look sick or I’m too young to be that sick. I’m better than I was a few years ago; I have a wonderful doctor who has helped me treatment-wise tremendously and a wonderful boyfriend who cares for and supports me in any way he can. However, that’s no substitute for the fantastic men and women at BYDLS, who are some of the most caring, kind, understanding people I have ever had the pleasure of interacting with.