Sunday, September 7, 2014

30 Things About My Invisible Illness(es) You May Not Know

It's Invisible Illness Week!

1. The illnesses I live with are: systemic juvenile idiopathic arthritis (SJIA or Still's Disease), psoriasis, fibromyalgia, general anxiety disorder, depression, and patellofemoral arthralgia of both knees (yeah, the last couple are newerish)
2. I was diagnosed with it in the year: SJIA - 1994; psoriasis - 2010; fibro - 2012; GAD, depression, and the knee thing - 2014
3. But I had symptoms since: SJIA - Nov 1993; psoriasis & fibro - 1995ish?; GAD, depression, and the knee thing - who even knows, but since I was pretty young.
4. The biggest adjustment I’ve had to make is: having to look at my electronic medical record to remember everything I have!! Nah, but really the biggest thing has been to take care of myself and put other things on the back burner.
5. Most people assume: that my problems are because I'm overweight, but I'm overweight because of my problems!
6. The hardest part about mornings are: waking up. I could hit snooze forever.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: I used to say my laptop, but now it's my phone. I have so many apps on there, from anxiety calming apps to snapchat and instagram to tumblr, twitter, and facebook to keep my advocacy up on the go. It also helps me connect with and talk to the most important people in my life, so that's pretty baller.
9. The hardest part about nights are: the inconsistency in my energy levels. Sometimes I get home from work just half dead and can't do much. Other days, I can't sleep because of too much energy. Other times, it's because of too much pain.
10. Each day I take 10-14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: embrace those that have scientifically been proven to help my various conditions, but also don't follow those a lot (read: I need a massage y'all).
12. If I had to choose between an invisible illness or visible I would choose: invisible. The problem with the invisibility issue will not go away if I just had a visible disease, but only is us invisible peeps band together to raise awareness. Also, as frustrating as it is, I am privileged to not constantly be inspiration porn for people.
13. Regarding working and career: I don't even know what to say. I'm good at my job and I like it, but I don't love it. There are definitely more advocacy related fields/positions I wish I could go into. It's just a matter of getting those people to bite.
14. People would be surprised to know: that I grew up in an abusive home. Abuse is actually one of those things that's been studied and found to increase likelihood of having fibro, so it shouldn't be that surprising, but I'm nice haha.
15. The hardest thing to accept about my new reality has been: the shifting parameters. Look, I've been sick since before I had the chicken pox, so there isn't so much a new reality... but I've learned to do more self care. The frustrating thing with that is that my body's definition of okay and shitty consistently change, along with my energy and pain levels. I just wish it was more predictable.
16. Something I never thought I could do with my illness that I did was: to be otherwise healthy. I've been able to have some great role models lately, and I'm definitely working on it.
17. The commercials about my illness: are total BS. I don't go golfing. The good news is that pharma is listening to patients say that, and is trying to make changes.
18. Something I really miss doing since I was diagnosed is: coloring all day? Really though, I think one of the toughest things is not being able to go and do what I want without thinking about it.
19. It was really hard to have to give up: running. I was told by my physical therapist earlier this year that I'm not allowed to run for a while. I love the feeling of pushing myself to do more than I could before, and I'm feeling a little bummed about this. However, my knees are getting stronger and we can soon start running rehab.
20. A new hobby I have taken up since my diagnosis is: I'd like to think my music stuff is a good hobby, but I also consider my advocacy work to be a nerdy hobby.
21. If I could have one day of feeling normal again I would: use it for my wedding day, and I did. I'm so glad. If I had another one though? I'd want to go on a long hike or run or go be super active without bringing the cane just in case.
22. My illness has taught me: to fight for what I need.
23. Want to know a secret? One thing people say that gets under my skin is: when they give me advice on what herbs to try or give reiki healing a shot. Y'all, I've been sick for 21 years now. I know what works for me and what doesn't.
24. But I love it when people: do thoughtful things like ask if stairs are okay today when we're walking or when someone walks slower than the group to match my pace or when I get texts from people to check in on me while I'm flaring.
25. My favorite motto, scripture, quote that gets me through tough times is:
"When we are no longer able to change a situation - just thinking of an inevitable disease such as inoperable cancer - we are challenged to change ourselves. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end." -Victor Frankl
26. When someone is diagnosed I’d like to tell them: to do their research. Learn as much as you can as quickly as you can about your illnesses. Doctors aren't unable to make mistakes, and being an informed patient may just save your life - and it'll connect you with others.
27. Something that has surprised me about living with an illness is: how much more of a family I have in the chronic illness community than with my large extended batch of relatives. I feel there is less judgment, less frustration and agony over decisions. There's an understanding there that other people often cannot have.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hold me while I cry and assure me that my feelings are valid - and that everything will work out.
29. I’m involved with Invisible Illness Week because: all my illnesses are invisible to people who don't know them. We have to raise awareness.
30. The fact that you read this list makes me feel: good. Somethings have changed since the last time I did this, both for the better and for the worse. I think it's interesting to track those changes.

Wednesday, September 3, 2014

Wedded Bliss & A Crazy 2014

I can't believe I've been married over a fortnight. It's all a little weird. Aside from feeling more comfortable in my relationship, I didn't think anything would really change. And yet, here I sit feeling like a very different me than I expected. Some of that, no doubt, comes from the fact that I spent so much time thinking about and planning this wedding that I feel a little empty now. I'm not sure what to do with myself, other than to mother our new guinea pigs Gus Gus and Jaq... which means they're kind of possibly spoiled piggies.

The wedding went so much better than I could've ever expected. There was no drama. Things did actually stay pretty close to our schedule. I got to spend time with each of the important people in my life, and those people all got to meet each other. I danced most of the night, but what can you expect when they send a DJ who could be your musical twin and teaches you how to do the dances? I got to dance with my sisters, even the ones who aren't related to me at all, and with the awesome men in my life. I also got to spend some time with some of the cool spoonies I know, for which I'll always be grateful.

One of my favorite parts was being able to dance with my dad, even for a short time. For most girls, that's a no-brainer. Personally, I wasn't sure that would ever happen. You see, up until the beginning of August I had never gotten to meet my dad, and I had only talked to him a few times. I feel like I share an awful lot with you guys, but I haven't been able to share everything lately. One of the big things I learned this year was that there was a reason my little family seemed askew, and it's definitely been a part of the lack of new posts here. I really don't want to go into too much detail, because it's hard and I'm still recognizing a lot of it, but I learned that abuse comes in many forms. Dysfunction and abuse are different. Unfortunately, most abusers do not change and we have to cut off contact to live our lives safely and happily. My dad didn't even know I existed until I was five, until this disease had hit and brought with it too many bills to handle. A custody battle ensued. They were told I was fine and happy where I was, while I was told he only wanted custody so he didn't have to pay child support. I was told growing up that the lack of insurance was why I couldn't try new things or get hurt, when dad had to keep insurance on me the whole time. I didn't see a doctor or dentist from the time I was maybe eight until I was a senior in college, due to that supposed lack of insurance, and now have spent a very large amount of time and money to try to fix those things... which I'm still working on. My dad gave us money so I could get a hot tub to do water therapy daily. The money was spent elsewhere, and that was always a dangling promise *if* I did well enough or acted nicely enough. I've already talked a little about the abuse I've gone through due to people outside of the family too, and I've realized a little more about who knew things about that and didn't do anything. I could go on, but I won't, mostly because it's hard. I don't want to be a bitter person or focus on the past, as much as it seems it would be good to get a lot of it out.

I won't lie - I'm having a hard time dealing with everything. Dealing with coming to terms with how I grew up is being very difficult, and part of me is so very angry. I feel like I'm having to discover who I really am now too, and that's not an easy thing to do when you're in the middle of living your life! It's a lot to take in a very short amount of time, especially when I'm physically feeling okay. I wish my physical pain matched my emotional turmoil. It usually does, and the fact that it really isn't is both great and unsettling since I'm so used to it.

I think one of the most comforting things to know is that I am not alone in anything I do now like I felt I was growing up. I'm so grateful to have a sister I've known since she was born, and now to add a brother and another sister onto that is amazing. I have a dad and a stepmom who are more amazing than I could've hoped for. I don't know that I could be their kid more than I am if they had raised me. I have T's family, who are so caring and so helpful. I have some of the best friends in the world, including other spoonies and the person who helped me to really open up my eyes to the abuse I've gone through and has really and truly helped me get through all this without going bonkers. And, of course, I have T too.

All these great people make up my FOC, or Family of Choice. I couldn't be happier to have them as a part of my life going forward.