Still Standing Needs Your Inspiration

//Still Standing Needs Your Inspiration

Still Standing Needs Your Inspiration

Still Standing graphic

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.

She writes:

“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. ###

POST SCRIPT* 

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.”

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By | 2018-10-24T14:53:37+00:00 September 18th, 2018|Your Turn|20 Comments

About the Author:

I’m National News Editor, Jane Akre and I began Mesh Medical Device News Desk aka Mesh News Desk (MND) in the summer of 2011 just after the Food and Drug Administration issued an explicit warning to the public that complications associated with surgical mesh used for prolapse repair (POP) and incontinence (SUI) are NOT rare! That was the starting point for the litigation you see today and thousands of lawsuits have been filed by women whose lives have been altered, some permanently, by the use of this petroleum-based product.

20 Comments

  1. daniees S September 18, 2018 at 12:45 pm - Reply

    Today the Lord says to you,

    Isaiah 41:10
    Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

  2. Anon September 18, 2018 at 7:24 pm - Reply

    SS! Daniees S and I are having a oneness of the minds.. Isaiah 41:10, 13 are one of my go to scriptures when I feel a bit anxious.
    The New World Translation of the Holy Scriptures states them this way;
    Isaiah 41:10 Do not be afraid, for I am with you, Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.

    Isaiah 41:13 For I, Jehovah your God, am grasping your right hand, The One saying to you, ‘Do not be afraid, I will help you.’

    I will keep you in my prayers

  3. Blindsided September 18, 2018 at 8:32 pm - Reply

    “And he hath said unto me, My grace is sufficient for thee: for my power is made perfect in weakness. Most gladly therefore will I rather glory in my weaknesses, that the power of Christ may rest upon me.”
    ‭‭2 Corinthians‬ ‭12:9‬ ‭ASV‬‬

    Still standing,

    May God’s power rest upon you now!

  4. Still Standing September 19, 2018 at 1:29 am - Reply

    Wow. Thank you. What lifting and comforting words. There are so many ways I have felt the hand of God just the past ten days. It has only been ten days since I was told it was urgent that I have the mesh removed from my rectum and vagina by, what else, removing my rectum and entire vagina. That was on September 7th. , yet I had to fly home, pack up my entire apartment, rent storage, u-haul , people to move it ( i live in rural area but had to get apartment in KC a couple of years ago because I couldn’t make the four hour round trip to doctors appts any more from my home ) , discontinue utilities, internet, all of that end your life as you know it stuff, and be back at Mayo on the 13th for pre op. Really, I’m exhausted and have one more day to be a bagless woman. I had two painful biopsies of my ulcerated vulva today, on top of everything and it hurts quite a bit. So tomorrow I have to do the full bowel prep, see one of my surgeons and deal,with the throbbing pain from the biopsy and stitches. God does not give us more than we can handle, but he never said we had to like it. Thank you again. I’m feeling held.

  5. Mary Dickson September 20, 2018 at 10:28 am - Reply

    Dear Still Standing,
    I am praying for you and I am saddened by what you are facing.
    My Moms mottos always came from the Bible. Her favorite, that she taught us kids, her grandkids, and great-grandkids, as well as her Sunday School kids, was the “10 Finger Prayer” from Philippians.
    “I Can Do All Things..
    Through Christ Who Strengthens Me”
    She was a positive person, and the strongest woman Ive ever known.
    I have a favorite verse, for myself, I want to share with you, because I have little patience, and tend to overthink and over-process…which is not healthy and robs the gifts and joy of the Present.
    It is, Be still…and KNOW that I Am God.”
    If you break this down, word by word, there is a powerful message in every single word, beginning with “BE”.
    Be, is a present-tense word meaning to apply NOW.
    STILL- means quietly, patiently, hopeful and alert
    And…means once you obey the 1st 2 words..
    Know- to me, means have no doubt.
    That-means whatever you are struggling with…
    I-is descriptive of God
    Am-is the comfort of “right now” and forever.
    God!!- All-knowing All powerful and JUST…and worthy of our trust in His Name.
    These are my perceptions of each word in the verse, and each person may have their own.
    That verse has helped me and inspired me in many ways, and I hope it will comfort you!
    I pray Jesus will hold you during this ordeal, and give you the strength and healing to recover!
    Sincerely and With Love,
    Mary

    • Jane Akre September 20, 2018 at 11:26 am - Reply

      Thank you Mary. Still Standing is undergoing surgery now. Let’s uplift her with positive thoughts! Thank all of you wonderful women!

  6. Jane Akre September 25, 2018 at 4:00 pm - Reply

    this is a test……

  7. Still standing September 26, 2018 at 5:47 pm - Reply

    Jane, I wanted to do a short update and a long thank you to those of you who stepped up to offer comfort I’m still in the hospital at Mayo. My colostomy just has not produced anything yet and they will not let me leave until my stoma works. I’m hoping that happens soon.it has been a week tomorrow and I’m getting impatient. One of the surgeons today told me the microscopic findings today and the mesh had eroded completely through the recital skin layers. He said the mesh had concreted itself to the colon. The surgery time was 10+hours. From the time they toqok me from or prep until .I was in recovery was 16 hours. That is a long surgery. Post operative pain is s pretty intense. They had to remove anal tissue and just sew it up. Agonizing. I keep thinking it will get less sore but it is just pure visceral pain that nothing helps much. It will get better but none too soon for meme. Agajajane, thank you for reaching out on my behalf. This is the hardest psychologically and physically demanding of anything I have ever done.

    • Jane Akre September 26, 2018 at 9:18 pm - Reply

      I wish there was something we could do to relieve your pain…….bastards who did this. Special place in hell!!!

  8. Still Standing September 29, 2018 at 1:02 am - Reply

    Hello friends. I’m finally discharged from Mayo. I am hopeful for a a good recovery. Although it will be a slow process, I’m grateful to have gotten this far into my healing, minus body parts, but still have my brain and communication tools. I’ve decided to practice what I preach and devote the next two weeks to optimize that by lots of walking, good nutrition and rest. My goal is to regain enough physical and emotional strength to finally reach a personal goal next summer. I had planned to hike Hadrians wall in Northern England when I turned 60. It is 83 miles, some sloapy terrain with quaint B&Bs along the way.it is all foot traffic. I was two years into mesh then and it was impossible to do. Then, I put my goal to 65 but I was still in no way able to make the trip. So, next summer I will be 68 and time to work toward a renewed goal. Nothing will get in the way, not my colostomy bag, my altered body, or fear of “what could happen”. ,
    .

    • Jane Akre September 29, 2018 at 9:52 am - Reply

      I would love to join you!!!

  9. Still Standing September 30, 2018 at 6:34 pm - Reply

    Hello friends. I’m finally discharged from Mayo. I am hopeful for a good recovery. Although it will be a slow process, I’m grateful to have gotten this far into my healing, minus body parts, but still have my brain and communication tools. I’ve decided to practice what I preach and devote the next two weeks to optimize that by lots of walking, good nutrition and rest. My goal is to regain enough physical and emotional strength to finally reach a personal goal next summer. I had planned to hike Hadrians wall in Northern England when I turned 60. It is 83 miles, some sloapy terrain with quaint B&Bs along the way.it is all foot traffic. I was two years into mesh then and it was impossible to do. Then, I put my goal to 65 but I was still in no way able to make the trip. So, next summer I will be 68 and time to work toward a renewed goal. Nothing will get in the way, not my colostomy bag, my altered body, or fear of “what could happen”. ,
    .

    • addison October 9, 2018 at 1:40 am - Reply

      What an awesome hike that will be, SS. 🙂

      You and your family are in our thoughts and prayers. How are you doing? Is there anything we can do for you at this time?

  10. addison October 9, 2018 at 1:34 am - Reply

    Thinking of and praying for you, SS.

    How are you doing? Is there anything we can do for you right now?

  11. Mary Dickson October 9, 2018 at 1:25 pm - Reply

    Hi StillStanding!
    I just want you to know I have prayed for you, (a lot) and I am amazed to hear from you, during the horrific pain you must be going through! As I read what your Dr described from your surgery, it felt like the “elevator experience” when it begins to move.
    I am very moved by your strength and your goals, and I have no doubt you will achieve them! Hiking and exploring have always been my favorite activity.
    I hope you are giving yourself TLC and I pray you heal completely. I have always believed, as long as we have the capability to think, and dream…then our God-Given-Gift of Free Will provides the ability to overcome bad days and bad things we face in our lives. We cannot change where we have been, but we can choose the way we think about it, and the path we take in the future. The “curves” and upward trails hold promise for surprises, and at the end of a “good day” never forget…
    The Best is Yet to Come🈂️🌟🏹Mary

  12. Still Standing October 11, 2018 at 9:23 pm - Reply

    Thank all of you so much. I had a bit of a bump last weekend and ended up back at Mayo for the weeken. Developed a large abcess (about 7 invh diameter at the surgical sie and had surgery to drain it and place a drain. I went home Sunday night thinking I just couldnt keep doing this at all but CT scan yesterday showed it is much smaller. Whew. Today had appt with surgeon and he removed the stitches. I cant tell you how much that helped. Just FYI, when you rectum and anus are removed, they sew up everythung from perineum almost all the way up the butt crack ( sorry, but there is no delicate way to say that). Just that was overwhelming. It is brutal, so to have those stitches out was a victory for sure. My surgeon told me two months is kind of the ascent to recovery phase. It was only three weeks today. Then I saw my stoma nurse today and she said she would have never believed I had a 10 hour surgery only three weeks ago. She taught me a lot about how to care for this new part of me. Knowledge truly is power. They helped put things in perspective. Im a good teacher about caring for your body and mind but not very good at doing that for myself. Im very hard on myself. But we actually stopped at a Target after that appt. and I bought some Halloween cards and other things to send my two granddaughters for Halloween. It felt, well, normal and even though Im a bit overtired tonight, it was worth it for sure. Ladies, we just have to keep tilting our windmills however and whenever they come. We CAN do all things through God, who strengthens us…Amen

    • addison November 4, 2018 at 4:15 am - Reply

      Good morning, Still Standing. I don’t know if you’ll see this, but I’ve been thinking of you and wanted to check in this week. How are you, especially since the abscess development? We continue praying for you and your family.

  13. Nannyj October 12, 2018 at 4:53 pm - Reply

    Does anyone know if the J & J latest round has been settled yet. My deposition was taken this
    Spring and I was told to expect this to be over in a few months. Also, some items I’ve read led me to believe those of us who had ‘trial-like’ depositions with video, etc will realize decreased settlements due to increased cost for the attorneys, court reporters and assistants. I’ve even read that some of us refused the settlement offers due to reduced amounts. I just wish this would all be over soon.

  14. Still Standing October 16, 2018 at 1:32 am - Reply

    Yes, Nanny. Any cost that were paid by your attorney on getting your case trial ready will be deducted as part of your total case costs. It is just the luck( or unluck) of the draw. In the wave cases, remember that the plaintiff attorneys got to pick half of the cases and the defendants got to pick half of the cases to be worked up for trial. It was good while thinking our cases would see a courtroom, but it does unfairly cost us in settlement process. But that is not the only unfair thing. Most people with three or mord surgeries get the same as us with nine surgeries or more. None of the process is “fair”, but we learned that a long time ago.

  15. anonymous October 26, 2018 at 11:54 am - Reply

    Nancy you will get about 40% or less by the time they take all the fees out. What sounds like a great amount of money will look very sad by the time every one is paid. You will be the last one to be paid. There are no options if you have agreed to the settlement. And then if you owe anyone for helping you out they get their share too. So by the time payments are all made you may have to live a very different life style. It is a damn shame what happens to mesh victims and how little we really get out of these settlements.

    Still Standing I am sorry you have had to go through this. I know God counts a woman’s tears and one day he will make it all better. I always tell people I am getting closer and closer to the jumping off spot with each year that passes. I can’t wait to meet Jesus But until then take heart and know that he is holding your hand every step of the way. No matter the hell we go through now I believe and angel is there holding on to you. When the days and nights are dark you are not alone. Sometimes I have yelled at people that I need a human flesh and blood person to hold me. But when I cry out to Jesus he is there I know. Hang on to him and his angels. It may not make things all go away but I know he is with us until always. He is watching and taking notes. We may endure hell here but we will be in paradise one day. Hang on Jesus is watching. Just know lots and lots of people are praying for you. Someone as beautiful as you deserves the happiness you will find one day.

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