Hello Good Evening/Morning and welcome to Sunday’s and Small Talk but this isn’t any small talk! Warning it’s quite long and you may want to read it all.
Thank you for stopping by to read my blog. I did a lot of posting today on my Facebook page and it started with the thought of how I could help someone. To understand everything we go through as patients is a very complex thing. Only because have a TVM is not only a sensitive issue, we all probably had no idea just how bad the side effects could be.
spoiler alert, sensitive medical and personal information please share if you want to it.
I focused a lot of awareness and sharing local resources along with some controversial subjects on how Patient cases are being dropped, with little to no explanation as to why. I know recently the Judge that is handling a large amount of cases just dismissed a lot because the patient has not had a 2nd or more surgeries to repair or remove the mesh implant. I really can’t understand this seeing as the mesh itself is considered high risk and people are having chronic pain, infections, hospitalizations, doctors who listen and doctors who don’t believe them. (been there myself). Its really easy to get discouraged when dealing with such a sensitive issue.
saw this today and wanted to share…..
I know personally how hard this is to not just live with, having to deal with how others see you with their judgements. doctors not believing you or blowing you off because either they don’t want to take liability for prescribing, treating, or even helping patients or they (from medical staff to doctors, to even family and friends who have completely stopped contact with you, no concern for your welfare, and are cruel by talking about your fake illness to each other. It’s really hard to feel support from people who never believed you to begin with.
Do you ever find yourself wondering why you were constantly running around and going above and beyond in your life? I was doing this all the time. I found myself exhausted with the Keeping up with the Jone’s syndrome people pleasing to try and give my kids a good life and now everything is in chaos. I know I will have to blog more about more specific examples in later blogs, however there this little thing called people pleasing that really hit me with a hard emotional punch. Metaphorically speaking!!!
After I had my original surgery, I was ok for the 1st 1 1/2yrs.until the stiches were discovered inside my vaginal wall and then from there I was doing everything and I carried so much on my plate, I was trying to work, be a single mom and go from multiple doctor appointments, in office surgeries, out patient surgery on a revisional, continued pain, Pelvic Botox, to a 7 year on opioids prescribed by doctors based on my symptoms, to back injection surgeries (4) of them.
I have never been addicted to illegal drugs or used them for that matter and finally living daily with inhumane pain, suffering, and your own family thinks your faking an illness or thinks your acting like a hypochondriac. In the end it seems they all want to follow me on social media, try and find out what is going on, but can’t seem to pick a phone. It shows the big picture in the skeem of things.
Pelvic pain, rectal pain, abdominal pain, muscle pain, nerve damage, cannot regulate stool passage, or control when you have to use the bathroom because you have had two surgeries in that sensitive area, which can put you in bed in severe pain, hospitals, migraines, .feels like razor blades passing stool, so I have to take laxatives which leads to severe diarrhea for days and days or it’s extremely constipated and now change my entire diet because most of everything I can no longer enjoy or eat, and more but I think you understand what I mean. physically I cannot do anywhere near what I used to be able to do.
These mesh implants are considered high risk, dangerous, and lists all the side effects, almost every one of my symptoms were listed and it’s nothing to joke about or even to gossip about. I mean, who does that? No one (that thinks they are informed but aren’t) bothers to try to understand with compassion, love, and support which I thought that is what your family and friends are for right?. I guess I didn’t make the list, but it’s ok. I have my husband, who cares for me full time, and through all the up’s and down’s, my step son and my daughter. I always have someone with me on trips to the grocery store, but other than that I am homebound not able to drive my vehicle because the tags are behind.
Another Mesh Angel inspired this blog post… M.Hedgcoth
I am going to say this: because it’s the truth, no one outside my dad, mom, and one of my cousins, who lives in the bay area. A close girlfriend comes to have coffee with me on Sundays, and my Mesh Angels, I love you all thank you so much for your support, I can’t do this without you all. Other than that, no one has bothered to reach out to me from my family/friends and just ask how I am feeling, or even come by to see me. I have a huge family, it was really hard to deal with it without knowing what to do, do u you stay home in bed because of your pain: saying anything because I believe that it can make you look like you want pity or money or anything really.
Of course financially we are all getting hit, some harder than others and people are dying from this, like becoming homeless. All because a mesh implant ruin their life. I have never asked any of my family members for anything. (my parents are already counted and Guardian Angels in our family. When you get an injury like mine and so many other mesh angels, you can’t do nearly as much as you used too and most of the time, unless your family or friends are directly involved, then of course they wouldn’t understand which leads to unconfirmed third party info and that is how Judging others and rumors start and spread, and it gets you no where.
You either have compassion from family and friends or bias judgments about you, or even expecting you to come to them knowing you don’t have a car. I was watching how my world goes round, sat back and watched for over 3 years dealing with this, along with all the extra stress and watched what the true meaning of family is, that you find out who is with you when you end up with a physical and emotional disability. New global mesh alliance, one the mesh groups I am in, and even though I started this, it’s like I disappeared from my former life and I have been released from it, and now it’s time to focus on the future and helping as many Mesh Patients, their friends and family as best as I can and I am finally ready to say that it’s OK. Even though I am going through all this pain and suffering, I really miss having all my kids together. I pray God keeps all 5 of them close to his heart.
Spoiler Alert: Highly sensitive information..
(took awhile to get to it’s ok) I am happy to say that I have been opioid free for over a year now, it’s a lot harder to do certain things. I am really tired a lot and I am under specialist doctors care regarding the left over mesh they cannot remove, I was never addicted to anything that I couldn’t stop immediately based on patient care, I don’t use recreational drugs or abuse alcohol, but a glass of wine is probably ok, . Every part of what I do for home care is watched over by a medical team and I was never an addict or labeled an addict by my regular doctors and/or specialists and I continue to have medical care, If anyone read this blog post, then maybe understanding is more of the emotional support needed by family.
I found out through the grapevine that someone (a family member) told some of my other family members that I had a drug problem. I have never, I mean never done any illegal recreational Drugs, I have had doctor authorized medical plan which I cannot disclose, however so I think it’s because a rumor was spread. It’s been going on for months now. At my age you take a long good look back and I tell myself in a mirror right after I wake up and say “you are worth it” in my bathroom mirror, remember who you are, so this is who I am now, you either love all of me or don’t and it’s ok!. I love my family but things are different now. I have changed, still the same, but stronger for my kids, who I miss ever minute we cant see each other.
I have to have blood drawn every 3-6 months depending on how my first round of blood work is reviewed It’s poisonous and I feel like I am getting weaker. I plan on calling doctor later on today.
I almost deleted all my social media because why have it, if no one cares? Then I got to thinking, did a lot of praying, and I just woke up one day and decided helping other patients and connecting with other Mesh Angels was something I wanted to do. This is giving me constructive purpose since I cannot work anymore.
I want to hear about Mesh Patients and their journey’s because I don’t want anyone to feel the way did, Alone. That Mesh Patient always would have support, even from a stranger, because I know now, I am not alone, and I am still fighting for Patient Rights, Transvaginal; Mesh Angels, Family and Friends to show support for us. We all have each others support and every day we reach more mesh angels.
I am eternally grateful to God for showing me what was no longer needed in my life, for giving me the wisdom to break away from my people pleasing bad habits, and started to take care of my self, (medically under doctor care and prescription help with my doctors monitoring my progress to a quality of life I can live.. My road is a long journey of feeling like I am not worth it at time, but I shifted my cares to Mesh Angels. I truly believe that you can’t understand something you have never experienced and maybe that is what they need to remember when someone says something bad about Mesh patients and how we are making it all up.
A Special Thank You to my Husband for always standing with me, even through the up’s and downs, he is still here and to my kids who know things are tough, but we are still family no matter what. To my Mom and Dad, for always being there for me, even when things were tough. It’s take some time for me to reflect, but these works are true, you find out who your friends and family are, when something this devastating happens to you. I am doing fine, but with this mesh crisis, mental health and more than 12 sessions of Physical Therapy is most important because you are trying to help your pelvic floor which is more than likely recollasping.
Thank you for stopping by and reading my post. I am truly humbled! Please comment, Like, and Share if you would like. If anyone has something they want to add or ask, please let me know. Thank you again and a wonderful Monday.