Patient's Story: Joyce M.

I have lived with pain since 2004 when I had my gallbladder removed. I lived through 12 major surgeries and several minor ones. From that point forward, I have felt nothing but pain since. The pain has kept me from doing work like not being able to dust, run the vacuum cleaner, or mop my floors.

There is too much pain to even sleep. I lie awake for 4 days and 3 nights and sometimes more. I sleep with a heating pad on my back and ice packs on my neck and God help me if during the early morning hours, I turn on one side or the other, it’s like 40,000 volts of electricity going through my body. I cry in my sleep and, recently, I wake myself up crying. I have to make it stop and find a positive way to handle it. PainScale app does help me with this, from guided meditation to just reading the material. It has been a lifesaver as most people say that it's one day at a time, it is literally for me a nanosecond to nanosecond at a time because of the pain involved.

I am cleared to begin the first phase of getting a pain pump inserted. It seems as though this is my last and final option as I don’t have any other choices now with the degree of the disease progression and the pain I have from all the previous surgeries. With that said, I am grateful for my husband, fur-babies, and friends that I have here by my side. I am grateful that I have survived this long and have lived long enough to see the future in the eyes of my grandchildren. With my prayers, I hope that with the pain pump, I will have enough quality of life left to be able to keep a stiff upper lip, live a more normal life, and be a good wife to my husband whom I love and adore. Though I miss my family, they do not know of my issues, as there is nothing they can do about it anyway. So why worry them with something out of their control. I love them too much for that.

I really do appreciate how the tracking of my pain has lead to a better understanding of it and has helped me with my issues. I also agree with all the different levels of advice about pain, even those I cannot use, as I understand their importance for others. Unfortunately, the sarcoidosis that I have has been very aggressive and despite chemotherapy for years, the treatment has only made the pulmonary sarcoidosis go into remission while it’s continued up my spine and neck into my brain. I have a rare form of the sarcoidosis that only .09 to 1.02% of the population has with my condition. Operations will not help, the disease has already invaded my major organs and has spread to my spine, hips, sacrum and C-1 to T-1.

I am grateful for this app and I have recommended it to hundreds of people, literally. I am grateful for the accountability of it. Thank you PainScale for all that you do and making me feel not so alone and normal rather than a freak of nature. I am now ready to move forward with what lays ahead of myself. Thank you PainScale team!