September 28 – October 4th is Invisible illness awareness week. Below is the official 2015 30 things meme. Read mine and then make sure to check out the other participants here!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Psoriatic Arthritis. Not many people know what PsA is, but have often heard of rheumatoid arthritis. PsA is very similar to RA, in that your immune system attacks your joints and organs. PsA is a psoriatic disease and is related to psoriasis. Because of this, most PsA patients also suffer from psoriasis. My primary joints that are affect are my left knee and my right wrist… but autoimmunity is a systemic issue and actually affects my whole body. Because of this, I often feel like I have the flu or feel like I partied WAY too hard the night before. Many people don’t understand that one of the worst parts of the disease is truly the malaise and fatigue that you get from the inflammation.
Avascular Necrosis. I have AVN in my left femur bone. Basically what happen was that my bone had a stroke, the blood got cut off and part of my bone died. There were 2 parts that died at first, but through different therapies I’ve actually revived one part of my bone and I’m working to regenerate the bigger part with stem cells currently. The problem is that since it died, my bone started to collapse. That’s why I had to be on crutches for 3+ years. Imagine feeling like your knee was on fire, that every so often you got really sharp shooting pains in you knee and that your bone just ached 24/7… then you’d start to know what having AVN feels like 😉
I’ve been diagnosed with many other things along the way, but PsA and Avascular Necrosis are the ones that affects me on a daily basis.
2. I was diagnosed with it in the year:
I was officially diagnosed in 2012, but was told back in middle school that I probably have psoriatic arthritis.
3. But I had symptoms since:
In 5th grade I had my first inflammatory attack.
4. The biggest adjustment I’ve had to make is:
Learning to live a life that was much more calm and relaxed than the one I used to live. I was go-go-go, 24/7 before. Working, traveling, going out with friends – I never sat sit. Right before I had to go out on disability I was actually even living up in Manhattan. Monday mornings I would get on a plane to fly out to my client and wouldn’t return until Thursday or Friday. Having to go out on disability, I was stuck in bed for months upon months, when all my friends lives kept moving forward. I truly felt like my life was moving backwards and it took me a LONG to time figure out how to not resent everything that was going on with me.
5. Most people assume:
I just have a knee problem.
6. The hardest part about mornings are:
Getting up! Haha! Your body heals when it’s sleeping and chronically fabulous patients need a lot of sleep. I used to have really messed up sleep when my AVN was bothering me constantly, but since getting that under control it’s definitely helped that. If I’ve eaten something that has caused my body to be inflamed my hands won’t want to work right off the bat in the morning, I feel nauseous/tired/dizzy and can be extremely stiff and achy. The good thing is, I’ve been able to identify a lot of triggers that will cause this and I can help to avoid waking up like this ALL the time.
7. My favorite medical TV show is:
Probably Sex Sent Me to The ER hahaha
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
My nights aren’t too bad. I used to be absolutely exhausted by dinner time, but my fatigue has steadily been getting better and better. I can’t stay out as late as I used to so that’s probably the thing that bugs me the most. I feel like I’m an old lady because I want to be in bed by a certain hour.
10. Each day I take __ pills & vitamins.
At one point I was up to like 9 pills, 2 daily injections and a weekly injection. Now I’m down to a 1/4 of a pill and I’m almost completely off of that one! I’ve really been lucky to be able to identify triggers. I do take a shit ton of supplements though. It may not seem like a long list, but the dosages I take are pretty large. I take probiotics, multi-vitamin, glutamine, n-cystine, doterra deep blue complex (curcmin, green tea and a bunch of other important supples), fish oil, and I take digestive enzymes eat time I eat. I’ve seen a HUGE HUGE HUGE benefit in taking these pills. You don’t want to know how much money I spend on supplements – but hey, they seriously make a huge difference.
11. Regarding alternative treatments I:
Rely heavily on alternative treatments. Chiropractor care, massage, acupuncture, reiki, physical therapy, yoga, meditation, lifeforce therapy, essential oils, herbs – you name it, I probably do it. I really believe that you must look holistically at your problem and whole healing only happens when you work to make every system in your body healthy. Only ever targeting your symptoms isn’t going to help you in the long run – it’s only putting a band-aid on the problem.
12. If I had to choose between an invisible illness or visible I would choose:
Definitely invisible. It does suck getting weird stares when I use my handicap pass to park in a handicap stall, but I’d rather be able to parade around as a normal healthy person 🙂
13. Regarding working and career:
My health has had to completely make me rethink my career. And I couldn’t be happier for that. Now working with other chronically fabulous patients, I truly have found my path in life and I love love loveeeeeee it. Now, if I could only get my IT consulting paycheck that would be perfect 😉
14. People would be surprised to know:
I’m the happiest I’ve ever been in my whole life and I have the least amount of “things”.
15. The hardest thing to accept about my new reality has been:
That my friends will probably never understand. Because I visibly look the same (except for when I had my crutches) and because most people don’t understand how my illness affects my whole body. Most people are shocked to know I was on chemo for a while. Patients are always happy if they’re not diagnosed with cancer, but people with autoimmune disease actually have to take forms of chemo for their ENTIRE LIVES.
16. Something I never thought I could do with my illness that I did was:
Travel around the country speaking at different conferences, receiving a scholarship from Stanford Medical and even getting to interview celebrities! Some of the opportunities that I’ve been afforded because of my illness have seriously been the most amazing experiences of my life.
17. The commercials about my illness:
I basically ignore them haha either that or I think I should be the star of them 😉 haha!
18. Something I really miss doing since I was diagnosed is:
Eating anything I want and drinking beer 😉 haha And dancing. Going out with my friends, having a few drinks and dancing.
19. It was really hard to have to give up:
You know, it took me awhile to accept things, but there’s nothing that I seriously miss enough to dwell on it. I’ve realized that I’ve had to cut things out of my life, but it’s been for the better. Why dwell on things that would make me feel sick or worse?
20. A new hobby I have taken up since my diagnosis is:
Card making 🙂
21. If I could have one day of feeling normal again I would:
I feel very fortunate because with all the changes I’ve made in my life, I’m really starting to have “normal feeling” days again!
22. My illness has taught me:
To appreciate everything, to take nothing for grated and to be so grateful for what I DO have.
23. Want to know a secret? One thing people say that gets under my skin is:
“Oh just have a little bit. One bite won’t kill you.”
Yes, yes it will. Maybe not kill me, but it might make me spend the rest of my week in bed. No, I haven’t changed my diet to lose weight. No, having that isn’t just going to make me have “gas”. Food can be either poison or medicine and I choose to use it as medicine.
24. But I love it when people:
Reach out to me to just let me know they’re thinking of me. It’s hard because most people don’t know how to react to what you’re going through. Just knowing someone’s there really means a lot. A phone call can go along way 😉
25. My favorite motto, scripture, quote that gets me through tough times is:
It’s just a bad day, not a bad life 😉
26. When someone is diagnosed I’d like to tell them:
Realize that you need to take your health into your own hands. Become as knowledgable as you can about your disease, try your best to make changes on your own to help manage your symptoms and don’t ever let doctors push you around. You’re in control of your health and you need to do what’s best for YOU.
27. Something that has surprised me about living with an illness is:
It’s the biggest blessing I’ve ever received!
28. The nicest thing someone did for me when I wasn’t feeling well was:
Wow, this is a really hard one. Honestly, I’d have to say how my parents really gave up everything for a while to help nurse me back to health. I was 100% reliant on them and needed their constant support/attention/help. They’ve seriously gone out of their way for me and I truly could never repay them for everything they’ve done for me.
29. I’m involved with Invisible Illness Week because:
The majority of people live with problems. Most of our problems aren’t visible. Just because your problem isn’t visible doesn’t mean it’s not there. It’s imperative that we spread awareness and let others know!
30. The fact that you read this list makes me feel:
Cared about, loved and respected. Thank you for that <3
Wishing You A Pain Free Day!