Monday, September 19, 2011
30 Things About My Invisible Illness You May Not Know
Last Week was Invisible Awareness Week. I know I'm a few days late, but I am participating in this simple blog post meme to help spread awareness, not only into the public eye, but because there is still so much even my closest friends and family do not know.
It took me a long time to be able to talk about my disease. Fear, denial, confusion and shame all played a part in my life. This year is definitely a turning point for me. I have accomplished so much, despite my condition.
A few months ago, the Eastern Pennsylvania Arthritis Foundation asked me to be their 2011 Annual Jingle Bell 5K Run Honoree. I proudly accepted and decided it was time to open up about my silent disease. Over the next few months, I hope to blog regularly about my condition – my struggles and my accomplishments.
For now, here are my "30 Things About My Invisible Illness You May Not Know":
1. The illness I live with is: Rheumatoid Arthritis.
2. I was diagnosed with it in the year: August 2007, a few weeks before my youngest turned one.
3. But I had symptoms since: It’s hard to say. I definitely had days when I was in pain prior to that summer, and exhaustion (a symptom of RA) had been present for a long time.
4. The biggest adjustment I’ve had to make is: Asking for help. I had always been an incredibly independent person (some may even say stubborn...) Realizing I could not do many things was a huge blow. I still have trouble asking for help – it’s a daily adjustment.
5. Most people assume: I’m fine. They hear arthritis and think I can pop a couple of Tylenol and be on my way. They don’t realize I have to carefully plan out every day: plans, errands, vacations, work schedule, everything. In fact, most people don’t know I have RA.
6. The hardest part about mornings are: Getting out of bed. You know the tin man from the Wizard of Oz? That’s me for a good half hour.
7. My favorite medical TV show is: I used to watch ER & Grey’s Anatomy, but haven’t watched a medical TV show in years.
8. A gadget I couldn’t live without is: My heating pads! I have a wide variety – I have the plug in moist heat pad, a variety of different shaped microwavable heating pads and my favorite - the disposable Therma-Care 8 hour heat wraps... can we say heaven?
9. The hardest part about nights are: Finding the energy to get things done.
10. Each day I take: more Tylenol then I care to admit. I also take zyrtec/sudafed 365 days a year for allergies and prednisone as needed. Once a month I go in for an IV treatment for my RA med, but often I have to skip it due to illnesss.
11. Regarding alternative treatments: I have nothing against it if it works for you. I’ve read studies where alternative treatment is effective for immediate relief, but does not stop the progression of the disease. To me the long term treatment is most important.
12. If I had to choose between an invisible illness or visible I would choose: I’d prefer invisible. I’m learning to be more vocal when I need to be, but I also like the fact that I can hide it at my discretion.
13. Regarding working and career: It is difficult. I have had to cut back my schedule. I work part-time now. I write and blog when I can. I often don’t stop when I should, and I pay for it later. Live and learn.
14. People would be surprised to know: I need to take a nap almost everyday. People don’t often associate arthritis with exhaustion, but it is one of my biggest symptoms.
15. The hardest thing to accept about my new reality has been: The Unknown. When will I have a flare? What will I be like five years from now? Ten years from now? Next month? Will I have to cancel tomorrow’s plans? Will I have any long-term side effects from my meds? The list goes on.
16. Something I never thought I could do with my illness that I did was: Walk a 5K! Last year I decided I wanted to participate in the Arthritis Foundation’s Jingle Bell 5K run. I joined a gym & started to “train.” I didn’t care if I could only walk 15 minutes on the treadmill at very slow speeds. I worked hard and managed to finish. I came in last place – but it didn’t matter. I’m planning a repeat performance this year.
17. The commercials about my illness: I’m laughing. Whenever I tell people about the drug I take, they say, “Oh that’s the commercial where the list of warnings takes up almost the entire time.” Yup – that’s the one.
18. Something I really miss doing since I was diagnosed is: Knitting. I’ve been knitting since I was a little kid. I can still knit occasionally, but I have to use big fat needles so my grip is not tiny. It’s just not the same.
19. It was really hard to have to give up: Control. This goes back to the whole independence and asking for help thing. I’m still working on it.
20. A new hobby I have taken up since my diagnosis is: Writing! Who knew this accountant had a creative side? But I love to write! Of course, my hands don’t always cooperate, but I manage to squeeze in a little writing time everyday. I’ve even published a novel (Nate Rocks the World) and have two more in the works!
21. If I could have one day of feeling normal again I would: Play on the playground with my five year old. It is the one thing I have really missed, running around and playing with the kids.
22. My illness has taught me: Acceptance and patience – with myself. I used to get angry that my body was failing all the time. I had slipped into a depression. I was miserable. But as time went on, I realized this was the card I was dealt, and it wasn’t fair to anybody, including myself to feel this way.
23. Want to know a secret? One thing people say that gets under my skin is: when people compare RA to their sprained ankle or broken toe or pulled muscle. I get it... you are in pain – a lot of pain. I’ve had my share of bone & ligament injuries over the years before I was diagnosed. Yes – they hurt! But guess what? The pain goes away. There is an end in sight even though at the time it may not seem that way at the time. Until there is a cure found for RA, I have no end to my daily pain in sight. Do I say this out loud? No, I try to be sympathetic (and I truly do feel bad for you), because I know how bad the pain can get. But please don’t tell me you know how I feel.
24. But I love it when people: Include me in things. I have a condition – I am not contagious, you will not catch it I promise! I may or may not accept your invitation. I may accept your invitation and then cancel at the last minute. But just the fact that you invited me puts a smile on my face.
25. My favorite motto, scripture, quote that gets me through tough times is: It is a writing called The Spoon Theory. Everyone who either has or knows someone who has a chrinic condition must read it regularly.
26. When someone is diagnosed I’d like to tell them: First off – gather all of your loved ones together and have them read The Spoon Theory (see above!) Make sure you have a doctor that you feel comfortable with – don’t be afraid to switch! You are your best advocate when it comes to your own health care.
27. Something that has surprised me about living with an illness is: How amazing my family and friends are. You quickly learn who is in your support system and who is toxic.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband and children are constantly doing.. there are too many things to list – even small things like helping to carry in groceries mean a lot ... I could not get through this without them.
29. I’m involved with Invisible Illness Week because: It’s important to educate people. Millions of adults and children suffer daily.
30. The fact that you read this list makes me feel: loved. grateful. hopeful.
To help support me in my fight against Arthritis, please visit my Jingle Bell Run Donation Page -- we would love to have you walk or run with us. Even the smallest donation can make a difference!
xoxo - Karen