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.