Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

Sorry to hear that. I have alot of pain and weakness with my left hand which was my dominant hand and it makes me so tired sometime trying to use my right hand now . My left hand pain and swelling but some days I dont like being ask how I feel becasue I have always been over energetic to now I have no energy

Hi Becki. I had wanted to respond sooner, but I have been working some long hours this weekend. First let me say how sorry I am to hear of your mom's passing. The stress of this grief is no doubt making your health worse. I can relate. I had a tough couple of years taking care of my disabled parents while my spine was getting worse and all the while I was searching for a surgeon to help me and none would. I hired caregivers when I could find them, but I always had to trade shifts with them and be there when no one showed. I had to be responsible for everything. My parents were both in wheelchairs and my dad became an invalid and passed away. I was taking care of them at home because my dad didn't want to be in a nursing home, but he couldn't do anything for himself and it was really exhausting for me and I was in a lot of pain with my spine at that time. I had to get a Hoyer lift because I wasn't strong enough to help lift my dad. That would be hard for an able bodied person, let alone me who needed surgery. That last month was hard. I had trouble sleeping knowing that my dad was dying, so I put on music that helped me sleep. I cried myself to sleep every night. I just let the feelings of grief flow and found some peace in that. There was beauty there is the sadness. There was a particular song that was speaking to my feelings, so I would play that and just cry. That's also when I adopted a silly cat who could make me laugh on the hardest days. After my dad passed, I created an hour long video documentary telling the story of his life and that became his memorial service. It was very healing for me to do that and I had some closure. We grieve in our own ways, so give yourself permission to do what you need to do to process the feelings. It was neat to discover pictures I had never seen before of my dad as a kid with his mom.

I also wanted to say that as humans, we tend to think that other people think like us, but that's not always true. Other patients who read your story might think your situation is just like theirs and respond from that viewpoint, and that might sound like they are judging. I think they are just looking for common ground. We are patients and all we can really do is relate what we know from our own experience. No one here can give medical advice, but we all can learn something from each other. If something connects for you with someone here, that's good, but if not, that's OK too. It's up to you what you take from the conversation.

As hard as it was for me during those two years, there was also a gift there. During all the time I spent with my dad, I became closer to him, and I had more time with him. During that time, I was able to talk to my dad and he told me how proud he was of my artistic ability and that was what I was meant to do. My parents had never said that to me before and it gave me validation. They wanted me to pursue a career in medicine. I decided against it, and worked in research instead. I eventually left the lab and went to art school. It was right after my dad's passing and service that I got the call from Mayo to come for a neurosurgery appointment. I think it was just supposed to happen that way, and the compassion of the specialists at Mayo gave me the comfort to go forward with the surgery that I needed. I was also able to advocate for myself as a patient because of my biology training, and that definitely helped me understand medical literature and figure out what the other surgeons were missing. I found that literature because I looked up a term in a paper that my Mayo surgeon had co-authored and I found literature with cases similar to mine. I had an answer and I sent that case study in with my letter to this Mayo surgeon, and he took me as his patient.

Let me know if I can do anything else for you. I saw a counselor too and wrote down a lot of my feelings on paper. This all takes time and you will get through it if you let it happen. It's hard, but somewhere in all of it, you'll find your way again.