I recently reconnected with my former Rheumatologist who offered me some sage advice about my liver/pancreatic condition. She had been my clinician for about 25 years and when she retired she gave me her address/contact information as we had become friends.
In any event, while discussing my liver/pancreatic condition this week, as well as discussing autoimmune disorders that she had previously diagnosed me with, I had forgotten about the Raynaud's syndrome as well as Sjogren's and the ulcerative colitis. Her suggestion was that I get on the waiting list to see a rheumatologist, and I have asked for a referral to the same. While she agreed that seeing a liver specialist at UC Davis is important , I also need the help of a rheumatologist as all of my conditions could be related to some kind of autoimmune process. I have only a layman's understanding of autoimmune disorders, but understand now that everything I am experiencing could be related to various underlying conditions. I have recently asked for and received a referral to an opthamologist because I had noticed some vision changes as well as that feeling as if there is sand in my eyes, Lubricated eye drops have been helpful, as are the lozenges for dry mouth. Naturally, all of this is overwhelming, and with my recent experience of losing my therapist has only added to my distress over my current medical condition(s). I recently reached out to a therapist I saw over 25 years ago, and I anticipate a response from her soon. For what it is worth, the company which employed my tele-therapist has opened an internal investigation into her termination therapy with me, as well as the misinformation she gave to me about the company's platform and services. This too has added to my distress because it was never my intention to have this therapist face any punitive consequences; however, I see now that she did me a great disservice, especially by telling me that "video" or "FaceTime" visits were not available, when in fact they were. She also kept advising me I needed to be in a group because of my good coping skills and things of that nature, but because of my hearing impairment and the fact that I read lips would have created communication barriers. She did not understand anything about living with a hearing impairment, so I suggested she go on YOUTUBE and watch a video, POWER OF SILENCE, which I saw during the summer at my local public television studio along with my hearing aid dispenser who is also a close friend. In fact, I highly recommend this documentary to anyone who is deaf or hearing impaired or to anyone who wants to gain better insight to those with hearing impairments. My hearing aid dispenser is in this documentary and is a kind and compassionate human being. I am continuing to lose weight and have now developed other symptoms related to the dilation of my bile and pancreatic ducts. The itching is awful as is the chronic diarrhea which is now bright orange, telling me that the bile from my liver is not flowing as it should. While I remain patient until my referral to a UC Davis hepatologist is accepted, the waiting period to see a specialist of any kind is having an enormous effect on my anxiety/stress. All of this causes me to wonder how best to cope during the waiting period while my body undergoes tremendous changes that I have no control over at this point. It is no wonder to me that so many people with chronic medical conditions begin to lose hope, as I am beginning to experience. While I understand the changes in our medical system as a result of Covid-19, knowing this does not make the wait any easier.