So…I fired him and found another doctor. This new guy, so far, has been a 180 degree change. Yes, I still have to be on medications, but the difference in his work ethic and ability to care for my needs has made all the difference.
My hope and wish for all doctors is to take note:
- We are all people-not just sick patients.
- We are scared and are looking to you for help in hopes that you can help us feel better, not use us as a tool to poke and prod.
- We need to know that you care and are not just an appt. to fit in your schedule.
- A lot of us with auto-immune diseases are not understood or cared about in the surrounding world and situations that we are in day-to-day, please be that exception. Please show us that what we are feeling is realer that real. Please show us the compassion that we need.
- Don't dismiss our pain. Our pain is real. It hurts A LOT!
My new GI was so nice! I instantly saw that he was compassionate to me and my needs. He didn't just throw medications at me. He examined me and asked me a lot of questions about my history (all in which the first had not asked or done), he explained options that he would like to take, but also took into consideration my needs and wants. Because of this he put me on Uceris instead of prednisone. He also explained that he, himself, wanted to do a colonoscopy to see where my inflammation is and he needed to rule out Crones (which is something that in my 12 years of symptoms no one ever has done).
So, I have started my new medication regimen. It has only been 2 days of the Uceris, but I am hopeful that I am going to get better soon. I am looking forward to working with this new GI. I feel he cares and is looking in my best interest.
Now…just to let you all know, in the last few weeks, I have been so sick that I have very low energy or interest in doing anything that I usually enjoy. I have done a lot of research and I have joined support groups. I have come to new terms with the severity of my disease. I am no longer in denial with what I have, and I realize that I may actually have to take medicine for the rest of my life. BUT…I am okay with that! If I can have a normal life without this horrible pain and suffering that this medication can give me, I am all for it! I am tired of being sick and tired. I miss being energetic and spunky. I miss being fun for my kids and creative in my writing and art. I miss being helpful for my husband. I miss running and getting exercise. If medication can help me be "MY NORMAL", I am ready for it.
I have tried the "all natural" route. I am not against natural remedies, but for me they are more of a supplement that anything. I will still be looking to nature for my health, but for this, I need something more.
I'm hopeful that soon I will stop living in the bathroom, that I will stop the painful cramps and spasms, that I will stop bleeding, that I will soon have the energy to actually live life.
I must keep hope and look to positive thoughts. If not, I make my healing ability harder.
Advice:
- Surround yourself with things that make you happy. Watch comedies, read funny stories, surround yourself with compassionate people that make you laugh. I have been a comic junkie. I just love funny posts and pictures…especially the ones that I can relate to with my UC. (I will post some of my favorite ones below that I have found).
- Rest. Take a nap if you can. This one is hard for me with kids and a messy house. But I realized that the kids are happy when I'm happy and the house and the mess are not going to go anywhere. There will always be tomorrow. Yesterday I took a nap and it was great! I put a movie on for the kids and took a 15 minute nap.
- Do all things in the mindset of relaxing. Play relaxing music. Find a hobby that makes you feel good and relax (I have been knitting-super relaxing).
- Finally, pray and meditate. I, myself, believe in God and his wonderful healing power. I believe that he gives us the wisdom we need to take the steps to heal. I believe in the power of prayer.
I will continue on this journey of healing and let the world know. I am hopeful that I will not always be posting of my pains and sufferings with this "invisible" disease. I am hopeful that this road to recovery has found me.
