Day 22- 30

Because i have not been feeling well lately i am going to combine my last days on one post

22. How do you feel the medical system has treated you?

Very unfairly! I have had to prove myself time & time again that i am not a drug addict EVEN after my diagnosis!! I also am tired of being a number and not a patient.  Just because we have a chronic and or terminal disease does not make us less of a human. Another issue i am having is finding the right rheumy doc as many of them want to fit me in a box with others and News Flash, we are all different!  But with all this said, i am confindent the more we educate these doctors, nurses etc the better the “health” world will be .


23.What do you tell yourself when you need a pep talk?

That i may not know what time i have left or the quality of life i will have while alive BUT i am a good person! I love with everything i am. I can get through todays trials just like yesturdays, and if God calls my name, its great news because i get to go home where there is no more pain or sickness!!

24.How do you juggle your social life through your illness?

I do what i can when i can and my friends understand that. I also plan my meds around special occasions. 

25.  Name 5 activities you do now since you found out you were sick?

Photography, church activities, health website, walking/mild hiking, outdoor activities like motorcycle traveling

26. What impact has this had on others like family and friends?

I have watched some people leave while i was experiencing symptoms but had not been  diagnosed  yet. I knew something was wrong with my body, i would share the symptoms not only with medical professionals but with my fiancee at the time. I know it was frustrating but when Mr.Rossi said he loved me and would always be there for me, i believed him.  That was tough knowing something was wrong and watching the one person who made promises to you walk out the door. But he wasnt the only one, also a few family members have had a hard time accepting my diagnosis and have chosen to not be a part of my life. My daughter is super loving and supportive as is my dear best friend Rhonda. Others like my church family have embraced me. A few other special people are also supportive.  I am ever so grateful to anyone who can stand by myside through it all. Watchingme deteriorate  right before their eyes can’t be easy. I am very blessed by the ones who stay:-)

27. What has been the most valuable advice you have received? 

Don’t be afraid where we are going, there will be no more pain!

28. Name 5 things you have achieved while sick. 

1. I have been able to do one long ride on our motorcycle 2. i have been able to set monthly goals and complete them 3.i have done some traveling in Some statesi have never been  4. tyrone wells helped me go to a special part of his tour 5. Forgiveness

29. What helps you cope with your illness?

My website, traveling, finishing school, helping in my church

30. Name each part of your body & how it affects your health.

My toes and heels swell & bleed and lumps grow on them sometimes, calves and knees fill with fluid, bruise and hurt, thighs and hips hurt so much I scream, my spine is almost always swollen and causes me a lot of grief. I get headaches and pain in my jaw. My bones are brittle.  My hands swell and hurt. I can barely open things incouding jars and makeup. I walk with mobility aids. I internally bleed and sometimes throw up for days. I always have pain!! I also habe severe fatigue and sleep most days away. My skin is changing color and I get rashes so bad i have to wear medicine on my skin. My hair is falling out due to the chemo meds i take. I know i have not covered everything, some thingsare embarrassing   and private but i am sure you get an idea on what i deal with. 

Day 20

Have you met anyone with the same illness/disease and did it help?

No i have not personally met anyone wIth my disease. But i have talked to several people online. Many people online have been very helpful to me. Because of them i do not feel as alone on this scary journey. I hope one day to be able to meet up with some others in my community and or at a convention. I became an advocate so that i can help others and myself.

Day 18

Do you think you have become a better person due to your illness?

I would have to answer yes not to say that i wasn’t a good person before but now i have grown. There has been changes in my life. What has changed is how i see the world and myself.  For example i used to take simple things for granted like walking, talking, picking up things, the trees, the wind blowing through my hair etc.

Now all of these are special BIG things to me because sometimes i cant do/enjoy these things. Now i see life and all it has to offer.

When i look in he mirror i see a warrior, someone who can survive through anything(well most anything).  I try to be more positive, i watch what i say because words do grow legs.  

This all has been a reminder that life IS short, chose wisely how you use every second!

Day 17

How would things be different if you weren’t ill?

I would be done with my bachelors in criminal justice. Working with youth and trying to keep them out of trouble so they do not spend their lives in prison. I would be happily married to my partner. Taking vacations and traveling as much as we can. I would continue to do charity work as i did even before i became sick. I guess to sum it up, i would be doing all i can to enjoy life healthy.

Day 15

What would you say to people newly diagnosed with your disease?

I would say learn everything you can about it. Read books,blogs etc. The more knowledge you can  equip yourself with the better. Find a good Dr, one who you can really trust and talk to. Never stop advocating for YOU! This is your disease , fight for what YOU need. If your frustrated talk to someone, blog about it BUT get it out so it doesn’t define who you are

Day 13

Has your physical illness affected your mental Health?

Definitely YES!  When you are diagnosed with a chronic/terminal illness you have to go through the five stages of grief. Your life changes a lot. You can be depressed, angry, frustrated etc.  With my disease suicide is over 60% so yes it definetly affects your mental health and that is why its important to ask for help and if you need to scream…..scream!!! Its healthy to be angry!!! Give me a holler if you need someone to chat with.