Whoa! It’s been a minute since my last blog post. I checked the date. The last post was dated September 2023. It’s time to mention what’s been going on. First, i turned 60 years old. A huge milestone especially living with a disease that has no cure. Second, I think I posted I stopped taking Kesimpta injections. The constant migraines and nausea was getting old. After no support given from the neurologist, I made the decision to stop. The migraines and nausea have been less, but it’s more than what it used to be. I am wondering if there’s something else wrong. Will be discussing this with the doctor.

Finally, in October after a long thought process I relocated to South Carolina to live with my sister. The lack of support from my healthcare team, transportation and wheelchair repair failures, the constant battle with finding help, and government resources have caused my mental well being to be very unhealthy. I’ve been advocating for myself for many years and it has taken a huge toll on me. The last resort was from my PCP mentioning she was concerned because of my being alone and struggling and I am not resting any easier. The move was costly and the drive was beautiful, but exhausting. I am proud of myself having survived it in spite of the pain sitting in the car for over 14 hours. My feet swelled and after 2 months they still swell up. I will be talking to the doctor about this as well.

My mental health has improved. It is really nice to be around my sister. Nice to talk to someone face to face opposed to video chat. Many family and friends ask or comment how much better I look. I think I look the same. I just hope people understand that my physical wellbeing may never improve, but my mental health is better. My sister makes a huge effort to take me out around where we live. It is beautiful here. I thank God I was able to do the move despite the challenges. My physical health is still the same. I am lifting weights now. I hope that will improve my strength. I am able to stand holding a fitness pull-up equipment for 20 seconds, huge improvement just trying to stand up straight 5 seconds from a sitting position. I am not able to walk without my left leg dragging. I hope that changes as I do more exercises.

Setting up resources for myself is still a huge challenge. I do not think it matters where you live, people that work in healthcare or the local government or resources just do not think very good or outside of the box. I will be seeing a new physician this week and I’ve thought about how to handle this. I have had so many doctors and neurologists over the course of 33 years with this disease and I have decided that nothing will change in healthcare. I have to change my mindset and be firm in the direction of my health. Struggles are still there in terms of explaining my needs and the concept is extremely hard for people to understand. Some examples: I had to get a new state ID. I wanted the ID to indicate that I am Deaf. If something was to happen, at least whoever could check my id and see that I am Deaf. At the DMV, there were 5 people including the agent hovering over the computer for 30 minutes trying to figure out where to type I am Deaf on the id card. I told them to forget it. I brought my recent audiogram to show proof, but was told it was not acceptable because they needed a doctor’s signature on their form, even though their website says the audiogram is acceptable. Yesterday, I received a call from the doctor’s office to confirm that I was still going. However, the call and text said, Pamela Fine instead of Groth. I thought here we go again! The doctor office did not understand the request for an ASL interpreter. I had to take a few minutes to educate them. Even after I explained, the assistant still did not understand what I needed. Sigh.

I have to find a new neurologist. I am hoping the doctor I’m seeing can refer me to a holistic neurologist. At this point in my life, I’m more interested in just staying healthy instead of being put on meds to prolong the Multiple Sclerosis symptoms. I’m tired. I want to enjoy my time doing art, writing my book, researching stuff (my favorite thing to do), enjoy the beautiful SC weather and sites. We shall see how things go after my doctor appointment this week.