Hello and welcome to afterthoughts, stuck between two worlds living with a Transvaginal Mesh Implant and all the underlining conditions. Living with a mesh implant is really difficult. Emotionally I am getting stronger, although it’s been challenging and trying not to push myself into a full state where I cannot get out of bed. It’s fall now, which is my favorite time of year, going to spend time with family, gather with our loved ones, and enjoy life.
The last couple of days have been exceptionally hard to deal with. I deep cleaned my kitchen while our kids where on fall break. I feel like I worked out for a week straight and my body feels like it’s in shock. I am learning that I could be my own worst enemy when it comes to handling everyday life living with a faulty medical device that is partially still inside me, has my body really confused on how much normal I can do.
I really try to surround myself with as much calm as possible, it’s so overwhelming to think about everything my body deals with at one time. I want to share it so there is a better understanding of a day in my life.
(Please be advised that after this point in my blog post, there will be very private sensitive experiences that I am talking about regarding my battles with having a TVM).
Being awake or asleep. I can really say that the only time I feel no pain whatsoever is when I am asleep. According to my husband, while I am sleeping, I sometimes kick one of my legs onto the mattress really hard due to pain in my thigh into my abdominal area, I will sometimes moan as if I am in a lot of pain, toss and turn, however I am always on my stomach. When I wake up, I have to wait at least 5 minutes or more to see where my pain level is at so when I get up I don’t hurt myself trying to get out of bed.
After taking my morning pills, I sit and wait for some pain relief, because I am under doctor care with a Pain Management Doctor, I am now getting some pain relief. It does seem like I have my good days coming back little by little.
pictured above: This was me before my original surgery. I am at the Starbucks in Half Moon Bay, CA. Every summer I would take my kids & my mom and we would go Venice Beach, Half Moon Bay, CA. I was able to enjoy life despite having a POP, Pelvic Organ Prolapse. Having the surgery caused the pain and suffering to be almost unbearable to deal with. I have tried just about everything available to help with the pain. Today, nothing has changed since my first pelvic Botox procedure in August of 2013, which for me, my opinion, attributed to disabling me to a point of full incapacity. (please read my story on my blog page, it explains in a greater detailed manor, how having a TVM changed my life).
I really need to get back with my GI doctor, he was out of the country for 2 months, however he may be back now and I can schedule an appointment. Although I feel weak most of the time, I am trying to keep busy with projects at home, things that are easy to do and save the hard stuff for family to help with. Getting into more artistic fun projects, where I can relax my mind and body is helping me stay distracted from the constant pain. A heating pad, medication, and rest seem to really help with trying to overcome the pain for a while.
Going back to bed at night, I try to think of one positive thing I did that day, one deed to help my family at home, and prayer. I pray for everyone in my family and my friends whom I haven’t been able to hang out with, primarily because of where I live and also because I don’t have transportation right now. The sad reality has settled in and although it’s been hard emotionally and physically, to even try. I have mixed emotions about life in general. For me, this mesh condition is really difficult to understand. The worst feeling is that I haven’t found a doctor in over 7 years, who can tell me how to live with a partially defaulted Transvaginal Mesh Implant. I want to believe that if I can challenge myself everyday with one thing to overcome at a time, I just still have a chance to become successful again, even if it’s volunteering, helping patients when they feel no one else is listening or even cares. I don’t believe that it is, however finding that support system that the mesh will put you through, for those who have suffered, and even though who have lost their life, because a mesh implant caused infections, nerve damage, muscle damage, failed marriage, non believers that injury and side effects are a result of a mesh implant.
One thing I have learned is that even though I cannot work anymore, doesn’t mean life is over. For the longest time I really thought so, but experience has brought me this far and being on the brink of a deep depressive state, to where I am now. I know anything is possible, it might just take longer than I thought it would.
I want to blog a lot more and share daily accomplishments and hurdles. Experiences that I have over come, it really does help that I can write about it. Reading about Mesh Implant patients, their daily lives, they share their story, it give.s me inspiration, to know that I wasn’t alone in this and that maybe I am reaching someone, anyone, so they don’t ever feel alone, the way I did.
Thanks and Gratitude: Blogging has also helped in communication with my husband and children, so that they have an understanding just as I have been learning to live with. This really threw a wrench in my life “master plan”. My medical condition has affected my life so badly that I barely get to see my two oldest children, due to lack of transportation and now we live about 30 min apart. We keep contact on the phone. video chat, and through social media, they come and visit anytime they can. With all the experiences, I have learned that change happens whether we want it to or not. Nothing is promised or permanent, I have tried to chase the American Dream, not once, but several times. For a while, I really didn’t care about much of anything, because I couldn’t rationalize in my head, how this could have happened, why and what can I do to live with it all.
I will be doing a another separate blog insert on how having a Mesh Implant, led to loss of certain family members, loss of friends, and how it’s affected my marriage and children. With respect for their privacy, I will only discuss certain situations, directly related to the mesh and it’s impact, negative and positive, with the understanding that their privacy stay protected as well. To my Children:
Since 2010, I have overcome many hurdles and there have been good times, great times, and even low and bad times. It’s because I experienced being degraded, called a liar, been judged for how my home situation is, somehow it has made me reevaluate just what kind of life I want to live now, even with my limited options. Change is enetival and it all starts with making changes, forgiveness, acceptance, and realizing that there is no magic book, or procedure, or written instructions on just how to do that. I know that I cannot get back the life I once had. Having gratitude for what I have and a special place in my heart for the close family members who continue to help us, as our family struggles through the hard times.
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Updates: I am currently up to date with all my doctor appointments, my dentures are not correct and they are rubbing against my gums and leaving sores, so back to the dentist for re adjusting. I am still waiting on benefits to be granted through social security, and just trying to rest when I can. I am trying to deal with the financial pressure, as it challenges us from one month to the next. Some how we manage to get through it, with all the negative hurdles, we keep on going.
I don’t want to sound like a negative nelly, but the length of time to get approved for social security disability, it’s long, really long, like years, and no one that, I have been able to find, actually talks about the struggle before benefits are granted, and after it’s creating career loss for you or even if they aren’t then there will be the why? It’s still in it’s early stages of getting benefits for this type of condition, so my best observation is there are reviewing years of medical records, seeing me in court, I felt so horrible that day, and my requests, history, and I keep journals that details my daily struggles. I will be blogging more often with new and updated information as I go.
To all my mesh brothers and sisters, I love how even though we live in different countries, we can share information, see what is going on and support each other through it. Unfortunately, there are a certain amount of people, who think they know about what is going on and they are not doctors, or professionals licensed to treat patients with serious side effects, from mesh implants, they are not even patients. They can even be someone or someone’s, that is really close to you. Even if they mean well, it can complicate and possibly injure an already delicate physical status and emotional state of mind. I always recommending talking over with your doctor everything on your mind. If they are a good doctor, they will listen to your concerns and treat you properly.
I am hopeful that my new stragty of getting a new team of medical professionals, making sure they all communicate together, is the best choice and also realizing, ” I have a faulty medical device and not all of it is gone, from the what my surgeon who did my revisional had advised me” it’s scary not to know exactly what is happening
I know that the stigma comes from more of a status of life. I will get into that in future blogs however I will discuss and highlight on how much money you make, I call it the Status Qou. I want to do more blog posts just on treatment and lack of real care, that I experienced up until I really took my medical care back and started to make major decisions regarding my health, in fact it may take a couple of posts, just because of the length of time I have been living with this. A lot has happened over the last 7 years and because so much has happened to me, I feel that a better understanding may come from them. A lot of my depression comes from just dealing with ongoing medical issues, doctors, being a mom and feeling that were not getting addressed. It’s really how you see yourself, realizing that status quo isn’t that important, if you are wanted in their life, they will make efforts to include you in it. That part of this Journey has really been hard to deal with, especially not being able to afford things like I used to. I miss being able to do things with my family, go on vacations, live in a better neighborhood, and just not having to worry about so much at once. I haven’t given up on the idea that I will own my own house, get another new car, and everything will all come together, just it will be a Journey of the unexpected experiences.
Passion: I know that what I live with, along with many other Mesh patients, that not everyone will share in trying to give/get you real help, and others will work above the challenges and over come them, one at a time. I know that any type of mesh reaction will affect everyone differently, however I experienced a lot of questionable things that I had encountered along the way, some that shocked me.
There is a stigma, someone who has a real condition, that can’t be seen, like ours, gets treated differently, it can make it hard to believe that this happens and it makes it harder for the patient needing help. If you should happen to run into someone who suffers from an invisible illness, or even a Mesh Injury, please remember that there is a real serious chronic debilitating condition that is a battle that we face daily.
I really want to thank everyone in the mesh community, but most importantly, My family, I am truly humbled with everything and I know that we are blessed despite the obstacles we face. Thank you all for your continued support.
God bless and Until next time…
co founder of westcoastmeshfighter, TVM Warrior and Survivor