Friday, September 18, 2009

"You are so strong...."

I love it when people tell me this. It reminds me of how I have overcome so much at a fairly young age... I mean how many 24 years olds can say that they have had 2 brain surgeries, 7 1/2 weeks of radiation, and an adrenalectomy? But the truth is I am not really as strong as people think... I would not have chose this, I got given this. I believe that it has made me a stonger person than I would have been if I did not have this disease, and I like who I have become. Maybe I am strong... but trust me.... it is only because I HAVE to be!

Wednesday, September 16, 2009

I am not who I was Six years ago

"The person that I am now is not the person I was 6 years ago"

This is the truest statement I think I have ever made. Six years ago I had just graduated from high school, dating who I thought was the person I was going to be with for the rest of my life, going to school full time and working full time. I was busy, I was happy, I was healthy.... or so I thought..... in May of 2005 it felt as if my whole world had fallen apart.... Clayton and I broke up, none of my "friends" wanted to hang out, and I was FAT.... it seemed as nothing more could go wrong....

My life has become one that consists of everyday struggles and challenges, the struggle to find answers for the illness that has taken its toll on my body. I have to struggle through endless doctor’s appointments where I am met with cynicism and arrogance, and have been told several times that the treatments they have said would work to cure me have failed miserably. I struggle daily to put on a “happy face” so that my family will not see my pain. I have come to realize that the biggest struggle is within me. How do you keep a positive outlook when you are so angry because your body and mind are letting you down? My story is one I hope that others don’t find themselves living one day but if they do maybe by sharing my struggles it will help them realize that they are not alone. This disease is not a fairytale so there will not be any “happily ever after” but with knowledge and determination there will be a “getting better everyday!” Remember that you may stumble along the way and there will times you want to give-up, it has happened lots to me..... but when that happens take some time for yourself.... talk to those who listen without judgement and don't give up, because if you give up then the disease wins.... if you fight hard and do research and find something that works for you, you can win the battle.....

30 Things About My Invisible Illness You May Not Know:

I have "met" alot of "Cushing's Buddies" and other people that have suffered through what I have or are going through what I have and they have been a GREAT support! One of my "Buddies" had posted this and I "stole" it from her.... thanks Susan Kate.....

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Cushing's Disease before my Adrenalectomy/Adrenal Insufficiency (Addison's Disease) after my Adrenalectomy. My Adrenalectomy was performed on May 8th, 2008

2. I was diagnosed with it (Cushing's Disease) in the year: 2005

3. But I had symptoms since: When I look back I guess the sysmptoms started to show in 2003.

4.The biggest adjustment I’ve had to make is: accepting the way I look, I still have not done so
but I am getting better

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, however this is not true, I am on steroids that make it almost impossible for me to lose weight.

6. The hardest part about mornings are: getting up... I never feel rested.... I can never seem to get more than 6 hours of sleep per night.... most times its less

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my cell phone

9. The hardest part about nights are: hmm.... getting to sleep early

10. Each day I take __ pills & vitamins. (No comments, please) now I am down to a total of 3 pills per day

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.

12. If I had to choose between an invisible illness or visible I would choose: neither....

13. Regarding working and career: It has been hard but I have gone back to work after each surgery and radiation treatments.... I am now working 1 full time job and 1 part time job. I am tired ALOT but I push myself to do it....

14. People would be surprised to know: that I believe I got this disease for a reason and it has made me who I am and I like who I am

15. The hardest thing to accept about my new reality has been: That I am fat... oh and after my last surgery (adrenalectomy) I was told I am not allowed to go to Brazil like I had planned.... but you just wait.... I will.....

16. Something I never thought I could do with my illness that I did was: I am not sure.....

17. The commercials about my illness: there are none... YET!

18. Something I really miss doing since I was diagnosed is: being as physically active as I used to be... playing hockey, baseball, etc.

19. It was really hard to have to give up: I haven't really given anything up.... just have to do it in moderation... I am not as active but I try.... ok thats a lie..... I am not as social as I once was, I can't get over the idea that I am just a fat slob and thats what people see when I go out.... I am working on it tho... I am starting to go out more.......

20. A new hobby I have taken up since my diagnosis is: starting a Cushing’s support group on facebook, researching Cushing's and Addison's, writing a blog....

21. If I could have one day of feeling normal again I would: MAKE THE DAY LAST FOR ABOUT A YEAR! Then I would do EVERYTHING POSSIBLE!

22. My illness has taught me: Not to judge people by their looks, that God will only throw at you what you can handle (even if at the time you think you can't), and REAL friends and family are all that matter, and they will love you know matter what you look like

23. Want to know a secret? One thing people say that gets under my skin is: "Have you taken your pills?".... sorry mom but it drive me CRAZY!

24. But I love it when people: listen to me and want to learn about my disease (s), when they treat me like I am normal... not sick,

25. My favorite motto, scripture, quote that gets me through tough times is: I have 2... God will only throw at you what he knows you can handle, and "If God leads you TO it he will lead you THROUGH is"... I am not religous but I do believe in a higher power.....

26. When someone is diagnosed I’d like to tell them: Research..... do as much as you can, talk to different doctors, people who have had it or have gone through it..... get as much information as you can before deciding on treatments!

27. Something that has surprised me about living with an illness is: How some family doesn't care enough to become informed.....

28. The nicest thing someone did for me when I wasn’t feeling well was: my mom and Dad (Jim) have done lots for me.... done my chores when I was tired, helped me out financially when I wasn't able to work, listen to me when I am scared/sick/tired.... they have been there through EVERYTHING and I love them very much!

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.