Friday, May 3, 2013

May: National Lupus Awareness Month


 For the month of May, in honor of lupus awareness month, I will be doing a weekly posting about lupus. Hopefully spreading the word of this silent and wacky illness and my journey with it. 

Without further ado... 23 Things About My Illness:

1. The illness I live with is... Systemic Lupus Erythmematosus (SLE), otherwise known as "lupus"
2. I was diagnosed with it in the year... February 2013
3. But I've had symptoms since... I was an infant.
4. The biggest adjustment I've had to make is... learning to say "no" in order to put my health first. I'm always one to jump up to help someone else, even if it means sacrificing my time or energy. These days my energy is short lived and sometimes it's painful to help others.
5. Most people assume... that I'm ok. I look and act like your normal 24-year-old, but on the inside I'm dealing with a whirlwind. I try not to let my pain or fatigue show, but sometimes it slips through.
6. The hardest part about mornings are... getting rid of that morning grogginess. Fatigue has been a big player in my lupus. Even with medication I still need about 9 straight hours of sleep at night. With school it's hard to get that so getting my head on straight in the morning can be rough. Sometimes I'm groggy all day, other times I'm groggy for the first 2 hours of the morning.
7. My favorite medical TV show... it's not on TV anymore, but I really liked A Gifted Man. I love the brain!
8. A gadget I couldn't live without is... my bathtub. Soaking in the hot water gives my joints such relief! A gadget not related to health, my laptop. Everything's on it--school work, pictures, notes, addresses.
9. The hardest part about nights are... getting comfortable. Finding that "just right" position when your normal sleeping position causes your joints to hurt. I usually sleep on my left side curled up in a ball, but if my joints are achy, I can't be curled up and I've never been able to sleep on my back or stomach.
10. Each day I take... 7 pills, 2 of which are vitamins/supplements.
11. Regarding alternative treatments... I'm a big believer in alternative treatments. Everyone is different, but I know massage and hydrotherapy help me. The anti-inflammatory diet has done some wonders as well.
12. If I had to choose between an invisible illness or visible, I would choose... invisible. I tend to hide my stress, emotions, and pain as it is. I like to appear "normal" to others because I don't like those pity faces people tend to give you when something's wrong.
13. Regarding working and career... I'm still working on that. Nursing school has been rough. The stress from school put me into a flare that I haven't been able to get out of. Being on your feet for 8-12+ hours a day is a killer on my joints, but I love nursing so far. I just push through and take breaks as needed.
14. People would be surprised to know... that I have lupus. I keep it fairly quiet, but I've noticed that many people think if you have lupus, you have to have the "butterfly rash." Only 50% of lupus patients have the butterfly rash. I'm one of those with an atypical case.
15. The hardest thing to accept about my new reality has been... thinking about the future. It was really hard to have plans dreamed up and now have this unpredictable illness that can change those dreams and plans in a heartbeat.
16. Something I never thought I could do with my illness that I did was... I'm still working on my goal, but I'm trying to graduate nursing school with a 4.0 GPA. It's hard, but so far I'm doing it!
17. The commercials about my illness... there aren't any.
18. Something I really miss doing since I was diagnosed is... nothing. Thankfully lupus hasn't taken anything from me yet. I try to live every day normally. I do miss having some of the energy I used to, but that could just be me getting older.
19. It was really hard to have to give up... sugar! I started an anti-inflammatory diet upon my diagnosis. Sugar causes and worsens inflammation. For someone with a sweet-tooth, that was really hard!
20. A new hobby I have taken up since my diagnosis is... reading. It's not a new hobby, but I've been reading more now than ever. I take a daily 30+ minute relaxation break. I relax the best when I'm reading and journeying into another world with my imagination.
21. If  I could have one day of feeling normal again, I would... go sledding in a blizzard. Sledding all day and coming in soaking wet and having hot chocolate, just to go right back out again. The cold makes it hard on my joints so I only get the hot chocolate part.
22. My illness has taught me... to listen to my body and be my own advocate. I ignored my aches and pains for years, especially when I was a teenager and refused to get tested or see a doctor. When I finally did see a doctor, I was brushed off as having a "virus". I had to demand to be tested and it's a good thing I did, the tests were positive. Our body's know what we need and we really have to listen to what they're saying and advocate for proper care.
23. My favorite motto, scripture, quote that gets me through tough times is... "Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." (Joshua 1:9).

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