Personal Stories - Jessica

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30 Things About My Invisible Illness--Updated

Updated by Jessica on 11/20/10

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Cushing's Disease. I had pituitary surgery on March 6th, 2009 and again on 11/20/2009.

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: Birth, 1976

4. The biggest adjustment I’ve had to make is: Having to depend on other people, especially when there were times when NO ONE was available to be there for me in person! I like to be independent, I really do. But it's hard to accept help when you want to be on your own.

5. Most people assume: that if I would "just exercise more and eat less" that I could lose the weight the Cushing's put on me, and that my muscles would get stronger, and then I would be all better. The truth is, everything is backwards for a Cushie. Eating less causes the body more stress. Exercising more destroys muscle and bone more quickly.

6. The hardest part about mornings are: moving any part of my body, when those body parts won't move or if it hurts too much to move until my meds kick in. This sometimes takes several hours. My mornings can flip flop, which makes it harder to have a morning!

7. My favorite medical TV show is: ER, I really loved the human interaction. Having worked in an ER, it was a reminder of what I used to do before Cushing's really grabbed me. We're all people with baggage and our own health issues and we need to respect each other for it.

8. A gadget I couldn’t live without is: my computer or my phone... It's very surreal to have more computing power in my pocket now than I did 15 years ago on my desktop!

9. The hardest part about nights are: wanting to go to sleep and have a restful sleep, but having insomnia and hot flashes and panic attacks that wake me from sleep. I can wake from a dead sleep with a panic attack that makes me feel like someone shot a gun off right by my head. It's not a pleasant feeling. I can lay in bed all night long and stare at the ceiling, or I can try and be productive as a night owl.

10. Each day I take __ pills & vitamins: Between 10 and 20. It's more like 10 now because I don't have insurance and medications are expensive.

11. Regarding alternative treatments I: am interested in learning about them, but need to put my trust in the proven treatments that are currently keeping me from going into a coma or dying. I'd love to try acupuncture and a regular massage to help move the toxins from cortisol's aftermath would be nice!

12. If I had to choose between an invisible illness or visible I would choose: Probably visible. I'm tired of people just calling or thinking of me as a lazy overweight person when I wish they could see what I do and what I try and give to the world. Just the other day I heard someone thought I was fat and lazy and not a good person because of it. It really hurt my feelings that people pass such judgments and never really get to know me and what I'm about.

13. Regarding working and career: I miss working, I really do. I'm starting to gain more stamina, but not sure I'm able to do a 40 hour week just yet and be a mom. I may just end up a part-timer for a long while. I'm also tired of looking for work, but I still do it. I'm tired of being told I'm overqualified for jobs when it shouldn't matter.

14. People would be surprised to know: that I have already heard any advice that they might be tempted to tell me to help me "get better". Be my friend. Ask questions to understand my disease. But don't tell me your HCG diet plan or weight loss surgery will cure me.

15. The hardest thing to accept about my new reality has been: that I PHYSICALLY CANNOT do some of the things that my brain still thinks that my body can do. My brain said "Hey, jump onto that bench!" today at Disneyland... and my body said "Like hell you can do that!" If I plan ahead and conserve energy, I can do just about anything I want, but it has a cost. Physically I take out loans that I have to repay to function. I have to choose what's worth it and what's not.

This goes for mental things, too. Stress is stress. Everything adds up at the end of the day to equal stress. I may feel good several days in a row, but guess what? Then I have to crash because I've used any reserves I might have had.

16. Something I never thought I could do with my illness that I did was: survive the ostracism that comes with an invisible chronic illness and the emotions that come with this disease. Going alone to surgery and not having any support system was almost the end of me. I am thankful that friends have stepped up and blessed me with support when I have needed it most.

17. The commercials about my illness: do not even exist. I wish there were commercials... I saw no less than 4 women with full blown Cushing's at Disneyland today, and my heart broke for them.

18. Something I really miss doing since I was diagnosed is: I miss being SuperMom -- the lady who could work 10 hour days, cook meals, clean house, and still have time for Scouts... Now I'm just Mom who has trouble staying upright 3 days in a row.

19. It was really hard to have to give up: my can-do attitude. Now it's a "I'm not sure I can do that, let me get back to you in a few days to see if I have enough spoons."

20. A new hobby I have taken up since my diagnosis is: Naps. Napping is a good hobby. My concentration is mostly shot because of this disease, so I've not been able to pick up anything new or old. I just don't have the mental stamina to do most things I used to. I still love making movies and reading when I can, though.

21. If I could have one day of feeling normal again I would: OMG what would that be like?! Just one day?! I get excited thinking of that day, and then depressed because that day is still a long ways off.

22. My illness has taught me: to do the things you dream of while you are able to and don’t put them off, because you never know what might happen to prevent you from fulfilling those dreams if you wait. I want to do as much as I can, sick or not, cured or not.

23. Want to know a secret? One thing people say that gets under my skin is: People judging my decisions. Yes, I chose to dedicate a large part of my life to Scouting. I DO NOT have the energy to do all that other people can do. So my fun, my service, my religious observances, my hobbies are wrapped around Scouting. It's not that I don't want to do those other things, it's just that I get more return for my investment in this one. So what my house isn't up to your standards. When I feel well enough to do something, it's better for my well being to choose something uplifting than standing in the kitchen cleaning for 3 hours and then being ill for a day after. I face a lot of hard choices you don't even have to contemplate, so cut me some slack.

Yes, I do a lot for other people. It brings me joy. But I can't always do everything I want to do. I've been scolded now for doing too much. Some things have to give, and I'm sorry. With the additive effects of stress, I have time to argue things that aren't in my control. Let's move on and do some good.

Yes I do a lot for scouting. It's a worth while hobby. Yes I have awards on my shirt and cool patches. So what? Is Scouting my identity? What if it was? Helping boys and young women become better citizens? What's wrong with that as a life goal?

24. But I love it when people: listen to me, tell me about THEIR lives, and do fun things with me when I have the energy, and help me out with everyday things that are physically difficult for me to do now. Thank you, Carey and Scouters and all my lovely friends who understand! Thank you to the people who remember my short term memory is crappy, and I need an extra hand sometimes to get things committed to long-term memory. Your patience is appreciated!

I love it when people treat me like a regular joe, one of the guys, a friend.

25. My favorite motto, scripture, quote that gets me through tough times is: Joshua 1:9 -- Have I not commanded you? Be strong and courageous, do not be dismayed or afraid, for the LORD, your G-D, is with you, where ever you go.

26. When someone is diagnosed I’d like to tell them: LEARN EVERYTHING POSSIBLE ABOUT IT AND HELP TO EDUCATE OTHERS ABOUT IT!

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

28. The nicest thing someone did for me when I wasn’t feeling well was: Cleaning for me, helping me pay for my trip to surgery, calling to talk with me and not in a hurry, seeing past my illness and doing something with me at my pace instead of theirs, sending me a real life spoon, crying with me, offering me a chance to do what I could to better the lives of others, despite my illness.

29. I’m involved with Invisible Illness Week because: I want to do whatever I can to make sure that non-ill people are made aware of Invisible Illnesses and the people who suffer from them are REAL PEOPLE WITH REAL FEELINGS, and are NOT just inconvenient burdens who can be set aside out of sight and therefore out of mind.

30. The fact that you read this list makes me feel: like you care.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com