30 Things About My Invisible Illness You May Not Know

During September, Invisible Illness week came and went. I had other things on my mind in September, so I’m talking about it now. While cerebral palsy is a disability and not really an illness, I still feel that it fits the bill in my case.

If you’re wondering how it’s invisible, the reasons are these:

  • I don’t ‘look’ disabled. I really don’t like this one, because I feel like nobody should be labeled that they ‘look disabled’ or ‘don’t look disabled’. But out in the world, people like labels.
  • When I’m walking around in public, or even in my wheelchair, nobody knows that I’m in a lot of pain. I look happy (because I am happy, based on things that have nothing to do with my physical circumstances). I think that, at least for me, walking (or rolling; mostly rolling) around with a sad face, or being angry all the time, would be detrimental to my life and to the people around me. Especially my kids.
  • Still a lot of my friends and family, even doctors, have a hard time understanding it. I’ve been a lot more open about the pain lately, and losing my mobility, but sometimes I still get the feeling that a lot of people don’t understand it’s more than just a limp.

Anyway, I found this survey on another blog, and reading her answers was interesting, so I thought I would post it too 🙂 Surveys are a fun way to learn things about other people, and even yourself, while your searching your insides for the answer to a question you had never thought to ask yourself. Here goes!

1. The illness I live with is: Cerebral Palsy

2. I was diagnosed with it in the year: 1987 I think? Maybe ’86. I was a year and a half or two.

3. But I had symptoms since: I was born I guess, just nobody really recognized them for a while. CP symptoms are similar to regular newborn/baby characteristics.

4. The biggest adjustment I’ve had to make is: Not being able to do whatever I want, whenever I want. Having an A-type personality and losing your mobility is hard!

5. Most people assume: Oh… where do I start with this question… Most people assume that I’m fine. That limping is my biggest problem.

6. The hardest part about mornings are: Everything. The pain is worst in the morning. It wakes me up before the sun. Which is good anyway, because I need a good couple hours to get it under control before the kids wake up.

7. My favorite medical TV show is: TV is boring. Turn up the radio. Or X Factor. X Factor is good.

8. A gadget I couldn’t live without is: My iPhone. Same answer as the last girl. But it’s oh. So. True.

9. The hardest part about nights are: Falling asleep when my legs are aching. Also, same answer as the last girl, who has Spina Bifida. I would add that staying asleep while things are aching is also a big challenge.

10. Each day I take at least 7 pills & vitamins. Lately it’s in the 20’s (Don’t judge me, a lot of ibuprofen for swelling and inflammation. And it’s OTC because I don’t wanna pay $100 plus to get and buy a prescription)

11. Regarding alternative treatments I: Have tried them all.. To help with pain and overall health and wellbeing. Again, same answer as the last girl. I would add that nothing seems to really help.

12. If I had to choose between an invisible illness or visible I would choose: 10 years ago I wouldn’t have changed it. Now I would. Well, maybe not, because I would have to choose a visible one, which has it’s advantages, but I don’t know if its a good trade off.

13. Regarding working and career: I miss working, and making more money than I recieve on Social Security, but I’m not going to let it bother me because I can’t change it. And some of the things I get to do now are pretty awesome.

14. People would be surprised to know: I feel like I fell/am falling through the cracks, medically speaking. I didn’t have any medical care from the time I was 13 until I got my first job with insurance at 23. And now, they don’t know what to do with me. I keep hearing about other people that are having surgeries that are working wonders for them, and I think a few of them could really help me, but I don’t have insurance right now 😦

15. The hardest thing to accept about reality has been: Losing my mobility, resulting in not being able to raise my kids or live my life the way I really want to. I don’t know that I’ve really even accepted it. I have for right now, but I still have hopes that it can be better.

16. Something I never thought I could do with my illness that I did was: Wear flip-flops. Stupid I know, but if you only knew…
Thank you, Old Navy, for making cheap flip flops that stick to my feet so I can wear them.

17. The commercials about my illness: Are always about suing doctors for medical malpractice.

18. Something I really miss doing since my disability has progressed is: walking, running, exercising, not being in pain… it’s a long list.

19. It is really hard to go without: prescription drugs! Same answer as the last girl. But seriously I couldn’t get out of bed without them. Or stay in bed, so that’s a problem. But most of all I wouldn’t be able to take care of my kids.

21. If I could have one day of feeling normal again I would: Go on a hike with my family. Climb a mountain or something. Fit in as much as I possibly could.

22. My illness has taught me: You can never truly know, or judge, what another person is going through.

23. Want to know a secret? One thing people say that gets under my skin is: You’re faking it. You don’t really need that wheelchair. You’re in a handicap spot. You could work if you really wanted to. Basically any kind of doubt that I have the trouble that I have. I think that stems from having some actual family members and friends say things like that.

24. But I love it when people: Recognize that despite my disability, I’m just another person, mom, etc. When they make the effort to get to know the person in front of the disability (I don’t think I’m behind it, it’s behind me), instead of being prejudice.

25. My favorite motto, scripture, quote that gets me through tough times is: “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy” James 1:2, and “Pray about everything; worry about nothing. Tell God what you need, and thank Him for all He has done.” Philippians 4:6

26. When someone is diagnosed I’d like to tell them: Don’t let anyone tell you what you can or can’t do.

27. Something that has surprised me about living with an illness is: Getting worse. I was always told it wouldn’t get worse. What they meant was that the brain damage wouldn’t progress.

28. The nicest thing someone did for me when I wasn’t feeling well was: A lot of things. Carry me, raise money for a wheelchair so I wouldn’t have to keep walking, accomodations and days off at work…

29. I’m going to get involved with Invisible Illness Week next year because: People need to be aware of what other people around them might be going through, and that they shouldn’t be quick to judge.

30. The fact that you read this list makes me feel: Funny way to end, but I’m glad you took the time to get to know me a little better 😉

Advertisements

For My Uncle Kreg

“At least I don’t have cancer.”

That’s what I always told people who asked how I could have such a great attitude about my medical problems. That was before my uncle was diagnosed with cancer. I had no idea how true those words would ring.

I always thought he would win. I always thought he would beat it. I never once thought “What if he doesn’t?” I think I was doing it to be strong. Strong for my aunt. Strong for my daughter. Strong for my uncle. Strong for myself. But now I wish I would have asked “What if the worst happens? What if he doesn’t make it?”

I would have gone to see him every day. I would have called him more. I would have sat and listened more. Instead of being afraid to talk to him, afraid to disturb him, I would have asked. I would have thanked him for everything. All the times he just sat and had coffee with me, or dinner. Thanked him for his guidance. For listening to me. For treating me like another adult family member; like my view and my opinion mattered. I would have told him just how much he mattered to me.

It’s not very often that I question the way God works, or why He allows things to happen. But this is one of those times. I still needed him here. I needed him to talk with me and have coffee with me. I needed his guidance and his outlook. My husband needed his guidance and his example. Who is going to mentor him now? Who is going to sneak candy to my kids in plain sight? He won’t be there to see Cruz grow up. He hasn’t really even gotten to notice all the cute things Cruz does now. You know, if it weren’t for uncle Kreg, Cruz probably wouldn’t even exist. Sure, my husband always wanted another baby, and every only child wants a baby brother or sister, but it was my uncle’s constant “So when is the other one coming?” That finally broke my grudge against pregnancy. But he never really got to know him.

And then I think about how selfish that is of me, because if I still need him that much, I can’t imagine what my aunt and my cousins must be going through. 25 years. They’ve been married for 25 years. They’re best friends. I can’t imagine what it must be like, after all that time, to look down the road without him. His oldest daughter’s baby is younger than Cruz. If I’m this torn over him not being able to see Cruz grow, I can’t imagine what she is going through. Or my middle cousin. 19 and going through college. He won’t be there when she graduates. He won’t be there to walk her down the aisle. Or watch her kids grow up. Or my youngest cousin. He’s only 16. He won’t even see him graduate high school. He claims he’s never having kids. Uncle Kreg won’t be there to change his mind like he changed mine.

But we know where he is now. There is no questioning it. He is in heaven. He is with Jesus. He has no more pain; he is healed. He has a joy that we cannot even fathom. And he will be waiting when we get there.

Uncle Kreg is still with us in some ways. Whenever the Oregon Ducks play. Whenever someone gives Promise, or Cruz, or his little granddaughter a cookie. Whenever we help someone, just because they need help. When I look at my kids, or my aunt, or my cousins, and remember how much he loved all of us.

During his fight with cancer, uncle Kreg told me about a book he wanted me to read. A book about one young man’s struggle with the same cancer. I am reading the book now, and I feel so sorry that I never really knew what it was like when he was here with us.

Many times, he told me that if he made it through, his dream was to spread awareness of this cancer. To speak in high schools and colleges and hand out this book that talks about the pain and loneliness of cancer in such detail. Such detail that it gave me nightmares.

You see, my uncle had testicular cancer. A cancer that none of us had ever heard of, yet it is the most common cancer among men ages 15-35. It is also the most curable cancer – if you catch it early. By the time my uncle was diagnosed – because he passed out and went into seizures one night – it had already spread to his lymph nodes, lungs, and brain.

It makes me angry to think that it is the most common cancer in young men, yet most people have never heard of it. Why isn’t there more awareness of this cancer that affects so many people? Awareness can save lives. It could have saved my uncle’s life.

So I intend to help carry out my uncle’s plan. I intend to spread awareness. If he, one of the least, maybe THE least deserving person that I know, had to die, I will help make sure that it was not in vain. That it does not go unnoticed.

Talk to your sons about testicular cancer. One awkward talk could save their lives.

http://testicularcancerawarenessfoundation.org
http://togetherwewillwin.net

Dedicated to my uncle Kreg, who read my blog posts from the very beginning.
2/14/65 -8/31/13
You are greatly missed.

Aunt Brenda and Uncle Kreg at my cousin's wedding, 2 months before he was diagnosed.

Aunt Brenda and Uncle Kreg at my cousin’s wedding, 2 months before he was diagnosed.

Uncle Kreg holding my son, Christmas 2012, almost 1 year after being diagnosed.

Uncle Kreg holding my son, Christmas 2012, almost 1 year after being diagnosed.

Us at Relay For Life 2012. Uncle Kreg is in front.

Us at Relay For Life 2012. Uncle Kreg is in front.

Testicular Cancer Awareness bracelets in orchid, the color of its awareness ribbon.

Testicular Cancer Awareness bracelets in orchid, the color of its awareness ribbon.