Invisible Illness Week 30 things

1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (POTS)
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 1989
4. The biggest adjustment I’ve had to make is: not growing up and being able to have a carer and family like i always thought i'd have
5. Most people assume: People who don't know me assume i'm perfectly fine and don't understand why i'm not in school/working/living on my own
6. The hardest part about mornings are: waiting for medications to kick in. Because none of my systems that should work automatically without me thinking about them work correct (heart rate, blood pressure, body temp, breathing, digestion, ect) mornings are hard until the medications that regulate those things kick in
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop 
9. The hardest part about nights are: not being able to sleep and loneliness 
10. Each day I take 20 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have always been open and have tried what i can afford
12. If I had to choose between an invisible illness or visible I would choose: i don't think it matters no matter what people who don't know me would stare either because i don't look like i need a handicap sticker or because my illness would be visible. people who know me are all pretty awesome and it really wouldn't matter. however, i do wish i looked at sick as i feel sometimes just do i wouldn't have to hear how "good" i look 
13. Regarding working and career: i always thought i'd work with animals or a pediatric nurse. i've tried a few job and baby sat for years but i'm just not able to hold down anything full time... or even part time for that matter
14. People would be surprised to know: how truly lonely i am
15. The hardest thing to accept about my new reality has been: i've always been sick but the hardest thing since being older has been knowing i can't be a parent
16. Something I never thought I could do with my illness that I did was: take a cruise and go on roller coasters (shouldn't do the roller coasters but i don't land myself in the hospital like i thought i would lol)
17. The commercials about my illness: don't exist 
18. Something I really miss doing since I was diagnosed is: i've always been sick so there wasn't a big change once i was diagnosed 
19. It was really hard to have to give up: it was hard for me to finally realize no matter how hard i push myself i can't keep up with people my own age
20. A new hobby I have taken up since my diagnosis is: i've always loved puzzles. it's something i'm able to do alone since i spend so much time alone and it's something i can do no matter how sick for the most part anyway
21. If I could have one day of feeling normal again I would: if money wasn't an issue i would fly to california and hike the red woods or take my nephew to the zoo without making sure i didn't have anything the next few days in order to recover
22. My illness has taught me: that not only can i not do it all... it's really not necessary to try and people who care about me don't expect me to
23. Want to know a secret? One thing people say that gets under my skin is: i know they mean well but it's hard to hear how good i look when i feel so horrible
24. But I love it when people: take the time to ask how i am and actually want an answer or take the time to send a text or give a call or best of all visit or give a hug :)
25. My favorite motto, scripture, quote that gets me through tough times is: Zep. 3:17
26. When someone is diagnosed I’d like to tell them: please don't give up hope and there ARE good doctors who know what they are talking about when it comes to POTS... it just takes time
27. Something that has surprised me about living with an illness is: how sometimes people outside my family can be more understanding then those inside it
28. The nicest thing someone did for me when I wasn’t feeling well was: taking the time to just spend time with me in the hospital
29. I’m involved with Invisible Illness Week because: so many people just don't understand
30. The fact that you read this list makes me feel: happy you took the time to try and understand

rough night, stable day

after a pretty rough night in winston and a nap when i got home i headed out to mow the lawn. i always listen to music when doing yard work and it's usually something that keeps me going. Rent is usually a top choice. Tonight i picked something totally different. i have two different "comfort" types of christian music i listen to when i need comfort (that's usually hospital stays not yard work!) One type is God loves you and is there for you kind of stuff and the other is an "i feel like the world is caving in on me but God is there" types of songs. Tonight i listened to my three watermark albums. Watermark was the first album i had been given after attending a church regularly (and later joining). Up until then besides a half of a school where i lived with a family who went to church my only exposure to God was my mother telling me there is no God and then my irish catholic family ( NOT NANA) and all of the catholics around me telling me that i was sick all the time because i was paying for the sins of my mother. I was always afraid to get in trouble because my birth mother could snap at anything but what made me more afraid of getting in trouble or doing badly was the thought of my future children having to pay for my sins. i'm glad Nana had many talks with me when i was young about how i was sick because i was sick that God wasn't making me sick to make me pay for the sins of my mother while still letting me think and question on what i thought about God. She said she knew there was a God but told me she wanted me to make that statement and understanding on my own not just because it's what she believes. By body did feel pretty beat up today so i guess maybe i needed those "comfort" albums to get me through or maybe i just needed a reminder of how i felt when i first heard them when i started attending a church. Who knows i just soaked up the music and came in feeling pretty renewed. POTS can't keep me down!

so on wednesday i went to the ER. I was severely dehydrated. After three sticks an IV was placed she was a really sweet nurse. I got two bags of fluid but probably could have used two more but the idea of 4 more hours (after 7) there was just too much. During the abdominal CT was done i was notified that they found a 3mm spot on my right lung in the lower lobe. I go to Cone on monday morning to have a chest CT with contrast. i should probably be worried about this but i'm strangely at peace about it.

May 2nd in 2001 my adoption was finalized after four long years in the court system! Then on may 2nd of 2007 i got my first tattoo that Nana and i has always talked about me getting but never did before she died. Here is to 11 years of being a Ruch and to all the hard work it took to get there!

Pain level is better today :) and this time around while i'm not eating much what i am eating and craving has been total junk food lol so this time around i might actually gain weight ;) LOL

It's really amazing what the human body and mind can handle, even more so with the right attitude and more importantly a solid support system! I have no memory of feeling healthy, feeling good. None. For me this is a normal part of life. There are people who are born with a chronic illness that handle it gracefully and then there are those that become very bitter about their situation. Please don't judge those who become bitter, because i've always been sick i know that the "world" of gracefulness and the "world" of bitterness are so close that they over lap just a tad bit in places. Its easy without the support of those around you to step into that bitterness world. If ever you come across someone that has found themselves stuck in that world show them grace and compassion it may be the only time that day they get anything like that. I feel lucky to be in the gracefulness world but that doesn't mean i've not gotten mad, broken down, lost hope, or even faith and slipped into bitterness. After all we are all only human! I'm in a bad flare up right now and the one doctor in the state that treats my condition is too sick herself to practice medicine anymore so i'm left in the hands of doctors who are trying to learn the ropes. I thought i'd be frustrated about this but instead i've been amazed at the willingness of these doctors to learn as much as they can and to ask me what has worked best in the past. I don't know how this flare will end. It could end as fast as it came on, i may need a day in the out patient hospital for a quick tune up or this may end up needing a hospital stay to get things under control. Only time will tell so for now i'm holding strong to my support and being lifted by prayers!