30 Things About My Invisible Illness

1. The illness I live with is:  Budd Chiari Syndrome(liver disease) and Prothrombin G20210A(blood disorder).
2. I was diagnosed with it in the year:  I was diagnosed in 2008.  I was pregnant and the ultrasound showed that my liver and spleen were enlarged.. 
3. But I had symptoms since: 2004.  I was pregnant(sensing a routine here!) and had gone in for the same big ultrasound.  The tech told me I had a fallen kidney.  He said that I had 3 kidneys and one was way down in my pelvis.  I didn't have any pain though.  However when I was diagnosed in 08 it was found that it was actually my spleen in my pelvis that had been pushed out by my growing liver and uterus.  
4. The biggest adjustment I've had to make is:  Asking for help.  And accepting it too!  And I still struggle with it.  I want to be able to do things for myself and my family.  Then on some days I just can't.  Letting people see me so incapable and having things done for me that I could normally do on my own is hard.  It hurts.  But I"m learning to look though the help and see it for the blessing that it is.
5. Most people assume:  I'm not sure what people think of me.  I could try but I think it would all be negative and that's not good.  I guess most people would assume that I was perfectly fine.  The probably assume that I am not being honest about being sick because I don't look sick.  
6. The hardest part about mornings are:  The insomnia from the night before.  This week I have been averaging 4-5 hrs a night.  Tossing and turning and trying to get comfortable.  It doesn't help that I am so fatigued that I am in bed for 5-6 hours during the day.  
7. My favorite medical TV show is:  I don't watch a lot of medical shows.  Unless Greys Anatomy and the old school ER count. Oh and Dr. Quinn Medicine woman reruns!  I have a weird taste in TV, I know!
8. A gadget I couldn't live without is:  With out a doubt, my phone.  I live off of it.  It is my connection to the outside world since I am stuck here at home.  It is my diet tracker, my mile counter. My camera, my alarm, my flashlight.  And I am also a text addict.  
9. The hardest part about nights are:  Trying to fall asleep.  I have horrible night anxiety.  I have medication for it. But at the moment I am out.  And I have to go back to the therapist to get my refill.  I really need to do that.  But after such a sad summer, I don't think I am ready to face it all.
10. Each day I take __ pills & vitamins: Between 4-6.  My doses change quite often.  Sometimes we add vitamins that I am lacking.  Or I get infections and the # goes up.  Nothing stays the same for long where my medication is concerned.
11. Regarding alternative treatments I:  Wish there was one. I'm just here waiting to get sick enough to receive my transplant. 
12. If I had to choose between an invisible illness or visible I would choose:  Invisible.  I only have to choose what and with who I want to share it with.   While I seem to share like the wind here on my blog, there are many people in my life that don't know the whole story.  And that works for me.
13. Regarding working and career:  I can't wait to get back to work.  To be well enough to work.  And to not have to take the medications that are preventing me from working.  Mostly I just want to contribute to my family.  The hardest part about not working is feeling like we are struggling because of my illness and there is not much I can do to help that.
14. People would be surprised to know:  that I am just waiting for the other shoe to drop.  Some people with liver disease get sick quickly and get their transplant fast.  My body is taking its time.  The shock on peoples faces when I tell them I am not sick enough for a transplant is hard to swallow.  Mostly because I am shocked myself.  Mostly I am scared.  Just waiting for my body to fail me. 
15. The hardest thing to accept about my new reality has been:  That my family will watch me get sicker.  It was easier when my boys were younger and didn't understand much. I was hoping that by the time they really understood I would be better.  My boys are loving boys and I can already see their compassion and caring.  I know if they see me sick, they are going to hurt for me and that is the last thing I want.
16. Something I never thought I could do with my illness that I did was:  Make real friends.  Not the ones who just feel bad, but the kind that love you back completely!  I am blessed.
17. The commercials about my illness:  There are none.  The day I turn on the TV and hear "Do you suffer from Budd Chiari Syndrome?"  I might pass out!
18. Something I really miss doing since I was diagnosed is: not second guessing myself.  Or not having to keep tabs on myself in my head so that I don't forget anything.  It has made me a tad paranoid.  Its mentally exhausting trying to keep up with myself some days.
19. It was really hard to have to give up: Honestly....Spinach.  Silly I know.  I can eat some greens with out throwing my blood into a frenzy, but high Vitamin K foods work against the blood thinners that are keeping me from clotting again.  Spinach was my favorite and its been 4 years since I've had some. Maybe this is a silly answer...
20. A new hobby I have taken up since my diagnosis is:  I've become a more active blogger.  Its how I have connected with so many who are also living with a chronic illness.  Things are growing around here!
21. If I could have one day of feeling normal again I would:  Spend hours playing with my boys.  To do that and not get so tired, would be the best day ever!  We could run for hours, stay out in the sun, eat what ever we want.  And Id have an ice cold beer at the end of the day.  
22. My illness has taught me:  That no matter what you do, how good you are, how healthy you are, how religious you are, it can happen to you too! Never in my life did I ever imagine I could end up on the liver transplant list.  
23. Want to know a secret? One thing people say that gets under my skin is:  "to much drinking?!"  Not all liver diseases are caused by drinking.  And drinking actually thins the blood, so who knows, maybe if I was a big drinker my blood never would have clotted?  And yes I know my I said on a normal day I would end with a beer.  Just one!  I was never a hard core drinker.  But I think because alcoholism is part of my family, people just assume that is the cause.  Its not.
24. But I love it when people:  Tell me how well I am doing despite being sick. They acknowledge that it isn't an easy thing to do and that is nice to hear every now and again.  Or when I get random emails, texts and letters in the mail.  Being sick can get so lonely, so when people reach out, it's the best!
25. My favorite motto, scripture, quote that gets me through tough times is:  "When the world says give up, Hope Whispers, Try one more time."  That is how I named my blog!  There is always a little hope.
26. When someone is diagnosed I’d like to tell them:  That they are not alone.  I had such a hard time finding anyone to talk to about my condition with because there aren't a lot of people with it or talking about it.
27. Something that has surprised me about living with an illness is:  The impact you can make on people.  If I were to ask friends to be organ donors before I was sick, they probably wouldn't.  But seeing me sick and knowing more about it has convinced many of them to register as donors!   
28. The nicest thing someone did for me when I wasn't feeling well was:  Watch my boys so I can rest.  Its the little things.  My MIL has been taking my 3 yo to her house while my older one is at school.  Its amazing how good a little bit of silence and rest helps me.  I get a lot of foot rubs too.  When my husband or sister make/buy dinner so I don't have to...love it!
29. I’m involved with Invisible Illness Week because:  There are so many people out there suffering with out anyone acknowledging  them.  Far to many people have the mindset that if they can't see how sick you are, you must not be that sick at all.  To many of us suffer alone because of it. 
30. The fact that you read this list makes me feel:  Loved!  Its nice to know that you take a few minutes to see what the heck I'm talking about now.