I saw this on a fellow Lupie's blog and I thought I would fill it out as well...
1. The illness I live with is: Lupus (SLE), Epilepsy, Polycystic Ovarian Disease, Gastro Esophagual Reflux Disease, High Blood Pressure + rapid heart rate, Bipolar Disorder, Raynauds Phenomenon, Fibromyalgia.
2. I was diagnosed in the year: 2010
3. But I had symptoms since: I started to notice minimal changes in my joints around the age of 13 starting in my hands. My severe symptoms didn't begin until around 2008. It has been an extremely progressive journey, each year, I am faced with a new and daunting challenge.
4. The biggest adjustment I have had to make is: The quantity in which I do things. I try to do minimal things to avoid stress, and flares. It's the quantity in which i do things that I focus on the most now. One thing you will learn, very quickly, is that each day, minute, and hour is never the same.. One minute you will be feeling okay, and the next you feel as if you've been hit by a truck. My sleeping habits have taken the biggest hit...
5. Most people assume: That because I have a full face of makeup on and I look okay, it must mean I feel okay. Wrong - inside, my body is deteriorating.
6. The hardest part about mornings is: waking up after a relatively okay day, to find that I can no longer walk on my own anymore. It's mornings such as those that are the hardest, it reminds me how sick I really am.
7. My favorite medical TV show is: I would have to say I have 3; Mystery Diagnosis because i can closely relate, ER, and Dr.G: Medical Examiner.
8. A gadget I couldn't live without is: It's a total tie. I don't think I could live without my laptop though. Second would have to be my blackberry.
9. The hardest parts about nights are: Falling asleep. Sometimes, I am in so much hurrendous pain, that the thought of falling asleep is discouraging. I can never seem to get comfortable. Some nights, even after taking my meds, and having a heating pad on my back, hip, and legs, I still find myself lying bed, awake, and in pain.
10. Each day I take: an entire "makeup" bag full of medicine..
11. Regarding alternative treatments: I think alternative treatments are a great idea as long as you work with your primary care physician and naturopath to create the perfect treatment plan.
12. If I had to choose between an invisible illness and a visible one I would choose: This is such a hard question.. I think about it often. There are days where I wish I didn't have an illness, especially one that doesn't show how sick I feel. A lot of people disregard you as being "lazy" or "unreliable" because of certain limitations you might have. But then, there are some days where I thank God, and truly believe it is a blessing in disguise that people can't tell how sick I really am. I hate when people stare because you look sick, I know they are just curious but it kind of hurts.
13. Regarding work and career: I am still at the point in my disease where I haven't begun treatment, it will be a journey to get where I want to be but I'm not giving up. I go to school part-time, and I am currently looking for a job that works for me, not a job that I work for. Ultimately, i want to be happy and I've come to the realization that it doesn't happen over night.. anything in life worth something takes time, and a lot of hard work.
14. People would be surprised to know: That i take 16 pills a day.
15. The hardest thing to accept about my new reality is: nothing is ever promised. Things that used to be so easy, and done without thought, are now as hard as ever, and have tons of thought put into it..
16. Something I never thought I could do with my illness was: To be a mom. It is something I have always wanted, however never thought I could have the opportunity to experience. When the reality of my disease was in plain sight, I thought that was it for my dreams about becoming a mom. From what my doctors have told me, it's totally possible!
17. The commercials about my illness: The only commercial I have ever seen is on Global, and it's been the same commercial for the last 8+ years.. to add onto it, it's only shown around Lupus Awareness month. It doesn't portray the disease at all, it's a celebrity talking about how her mother's Lupus effected her.
18. Something I really miss doing since I was diagnosed: I really miss sitting for long periods at a time, whether to watch a movie, or read a book. I usually can't sit for longer than an hour before starting to feel the pain really badly.
19. It was really hard for me to give up: Cooking. I love, love, love cooking. I used to cook every single night for my parents. They would come home every night to a home cooked meal. Since my disease has progressed, I have been unable to cook as I used to - my hands, back, legs, and hip hurt was too badly to keep up.
20. A new hobby I have taken up since my diagnosis is: Youtube :) it has become part of my daily routine... it's so much fun for me and I love being able to help people!
21. If I could have one day of normal again I would: Have a fun-filled day of old traditions; hiking, baking, bike riding.. Oh, how I wish..
22. My illness has taught me: There is always somebody worse off then you... sometimes you need to look at the positive in life and look for life's blessings - they ARE there.. you just need to look for them.
23. One thing people say that gets under my skin is: Maybe if you didn't take so many pills, you wouldn't be so sick.. they are what is making you sick! Oh, the best one is.. maybe if you went to the gym more, your joints wouldn't hurt so much.. really? who gave you your PhD!
24. But I love it when people: Acknowledge your fight. It makes me feel like I'm doing something right... we all need a little bit of encouragement sometimes.
25. My favorite motto, quote, etc is: "These things were sent to try us..." AND your biggest worries are the ones that don't happen.
26. When someone is diagnosed I would like to tell them: Learn to laugh. When you want to cry, learn to be silly.. eventually, things will get better.. life is a journey. It helps keep things interesting :) =
27. Something that has surprised me about living with an illness is: How fast life can change.. One minute, everything is fine.. the next, life is changed forever..
28. The nicest thing someone has done for me when I wasn't feeling well was: To come lay with me.. to keep me company. Usually when I'm really sick, just having company makes the world of difference.
29. I'm involved with Invisible Illness Week because: I'm not too sure what invisible illness week is so I'm going to go look it up after I finish this questionnaire.
30. The fact that you read this makes me feel: so honored. It is because of this that I do what I do. Not only do I love to educate people about my illness, I love to help people so they know they're not alone.
Thank you so much for taking the time to read this.. if you have any questions, don't hesitate to ask :)
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