Mesh Medical Device News Desk, September 18, 2018 ~ Still Standing has helped many of you with her insight into the legal process, the medical management of pain and life post implant and removal. Now she needs your help!
Still Standing, a lovely lady from the midwest, is undergoing surgery this Thursday, it’s very serious.
“Jane. Thank you so much for touching base. Yes, surgery Thursday. Scary but as my granddaughter who is nine years old said, Grammy you can do this. I can. Met with the ostomy nurse today. It helped. I had prayed for an older nurse. Just didn’t want a 30 something telling me everything would be ok. My nurse has been ostomy nurse for 30 years.
Wow, answered prayer. I left there with a great sense of peace about whatever happens. Just full peace.
Haven’t been there for a long time. My psychologist and I had a phone conversation this morning. She said you are idealizing the past ten years. You have not had a lot of good days, yet you are hanging on to them as if they were the best you can get. She told me to look at this ad a way to have a better future. She was right so onward to a better future.
Jane, I accept your prayers. I have a favor to ask you. I decided the other day that I was swimming to much in the well of sorrow. So, I am asking people to send me an inspirational quote or story that had meaning to them. I am going to print each one and focus on one every day. Would you send me one of your favorite inspirational quotes? Then, would you ask your readers to post their most inspirational thing? I think that request would be better coming from you. Then, we can look at them and feel supported by strength instead of bound together in weakness. It would mean a lot to me.
I appreciate your concern so much and, I will be talking to you soon about how we can encourage so many women who feel hopeless. There is always hope, we just don’t look hard enough when we are swimming in the darkness. We have to be thankful for the life we have right now, not lamenting the life we had before.
I firmly believe that where our mind goes our body will follow. ###
Update from Still Standing October 20, 2018 referring to a commentor on another story who said her life was ruined:
“Lorna, my heart breaks for your pain.. It is just such a tragic trail of suffering for all of us. I want you to know that you deserve to have your pain and sleep issues addressed. That doesn’t mean that you have the right to have the prescriptions you want, but your doctor has an ethical responsibility to address your pain and your sleep and come up with a therapy or combination of therapies that work. Lack of sleep is directly related to more pain in study after study. You need to go to your doctor and ask for a patient-centered plan of care that addresses your pain+sleep problems with you as an active participant. Be open to different ways to reduce your pain. This may seem counterintuitive, but walking every day, even short distances can release natural endorphins in the brain that reduce pain. Mindful abdominal breathing is also beneficial. When we hurt, we brace our muscles. They become shorter and then more painful and a vicious cycle ensues. Just lying on the floor or even the bed with your arms stretched out helps open up the diaphragm and those pelvic muscles. I try to do this for 30 minutes every day. Figure out if these or other things you do to reduce your pain. I have had to come to terms with the fact that I will always have pain. I have told my doctors I can live with a level 6 pain, but anything above that limits my quality of life. Have this conversation with your doctor, telling him or her what steps you are actively taking and ask for help to get where you need to be. Insist on it. I haven’t used narcotics for pain management except right after surgery. I have found that gabapentin works well in combination with muscle relaxers and sometimes amitriptyline. I also have a prescription for sleep medication. These things keep me functioning. I was helped a lot with pelvic floor therapy at different times. I have been at Mayo since August and had a ten hour surgery on September 20th that took my vagina,part of my colon, my rectum and my anus, all because of the posterior and anterior mesh implant I had in 2008 for prolapse. The mesh had cemented around my rectum and colon and was eroded into it. The same with my vagina. My doctor told me it was one of the top 5 most tragic cases she had ever worked on. I have a permanent colostomy. My life has drastically changed and I cant ever go back to the old me. It is an emotional struggle every day. But, I will go home the middle of November and will be able to wrap my arms around my two granddaughters and be thankful for that . It will be enough to make all of this worth it. There was a period of time this summer that I wanted to die. I’m so glad my attempt did not succeed.
That said, coming from my 10 year battle with mesh, I don’t think returning to your pre-mesh health is realistic. We all get stuck thinking about that time. However, at some point, we have to move from what happened to thinking what happens now. This is more a change in how we think, the things we say to ourself, and setting up realistic expectations for friends and family. We wear ourselves out trying to ‘be strong” and pretending we are ok so our family doesn’t know how bad things are. I was the number 1 great pretender for almost 10 years. My silent pretending, however, really didn’t help at all because there was not honest communication between us which increased stress and dysfunction.
This time, I had to have a very honest talk with my son and daughter, both in their 40s. It was hard to say the words vagina, rectum, anus to them, but I had to let them know everything that was going to happen. My husband as well. I was surprised by how they responded and showed up for me physically and emotionally during this time. My daughter helped the nurse change my colostomy wafer and bag. This would have never happened before. I had to become as vulnerable as I have ever been and because of this, I felt as supported as I have ever been during 9 mesh surgeries.
So, dear woman, do what you must to reduce your suffering. Sometimes we CAN change how we experience pain even though we still have pain. You deserve to have this happen. Bring together everything you can to get there.”