Hello and welcome to westcoastmeshfighter, just like in previous posts, I always post a disclaimer that I am not a doctor, lawyers, etc..(caption in blog further down) I am a patient who lives with a Transvaginal Mesh Implant and sharing my life experiences for the sole benefit to help others who may be suffering silently, so no one feels alone in this. I also want to say that I support all mesh groups, if I am not on your list yet, please send me a request. I support global connections and there are so many of us out there and just helping someone cope with the horrific side effects is so important.
It’s a beautiful thing to see such unity between us all, the love, support, and care, It’s Amazing. I am so very happy and grateful that I am a part of it. Thank you all truely from the bottom of my heart.
This post is a lot longer than I normally do, however I haven’t blogged in over a month or so and I have been dealing with so much, I knew it was time.. Grab a snack or your favorite drink of choice, and bear with me and Please join me by reading my blog and any feedback or questions, please feel free to comment below and I will do my best to find the answers to help you. Here we go….
It’s hard to believe it’s already 2018 and almost half way through January. I am not sure why, but to me, it seems time is flying by way to fast and I struggle to keep up with it. I have a long list of things to do and even if I get 1 or 2 tasks done, I am exhausted and feel so tired and fatigued. It feels like life is in fast forward mode and I just want to rest all the time. I forgot about an important doctor appointment yesterday, calling tomorrow to apologize and reschedule he day before I received my reminder call, I remembered it.
Even with my efforts to keep a organized calendar, I am forgetting that too now. It’s dealing with things like this and maybe if I can remember, I plan to mention it to my doctor on my next appointment, my husband is also going to talk to the doctor, so we can go over my new symptoms and start working on that. I am trying not to let that weigh too much on my mind.How days seems like minutes and my pain continues to increase and my medicine pill count has increased to 19 pills a day. I take, morning pills, around dinner time and then again at bed time. I can tell you that everyday is a different one, nothing ever is repetitive and it’s frustrating because I can never plan a day out completely, because I never know what level of pain I am going to have. I also am on medication that I take as needed.
Lately my muscles and nerves hurt so badly, I have been spending nearly everyday in bed. Also going completely organic, gluten free, low carb diet has my system confused, but I know as I keep at it, my stomach will get used to it. Back before my surgery in 2009, I drank coffee all day long, just to keep up with my lifestyle. I worked full time 40 hrs a week, plus raising kids, I was always busy.
Sadly, the new car I had financed on my own, repossessed, the home I was renting, I had to move from (owners sold), so around the time I had to leave my company, voluntarily resigned due to state law of running out of California FMLA time accumulated with the company. It seemed like a life snowball effect, one after the other, non stop, until I found my family in trouble financially. What amazes me is some of the hardest lessons I learned I learned in the last 3 years. I developed a very bad social anxiety disorder during this time and became extremely depressed beyond anything I thought I would ever face in my life.
I normally wouldn’t even talk about this subject in this detail, because of how delicate these cases can be, especially for those that are going through the social security process. Everyone’s case is unique, I didn’t know what I was doing, and I almost missed my appeal deadline with social security. If you don’t know what you should be doing to qualify for money you may have paid into the system, social security, you could lose possibly your opportunity for benefits, not just for you but for your family too. Otherwise you may have to refile. I fully recommend speaking to & retaining a lawyer if you have been denied and you have a doctor backing you up, that is so important. Get your attorney right after your 1st denial and expect at least a denial on appeal, a Administrative Law Judge may grant you a hearing. After, it can take (varies county to county, and state to state), 6-12 months to hear the decision. This is what I know…
I started my social security application process in the beginning of 2015, I was denied the first time, so I appealed and hired a lawyer, the appeal also came back denied, we requested a hearing with a Administrative Law Judge. It took 2 years and 2 months to get my hearing. I wasn’t nervous during my hearing, I answered the questions truthfully and left somewhat confused with no answers. Then my award letter arrived in December, I will never forget the feeling of knowing finally I can care for my children again without feeling like I can’t.
I talked with my attorney after my hearing and he said to me, because of my age (42 yrs), I am young, and my education past high school, (I have two college degrees), it could possibly cause a denial. Somehow I still didn’t feel any better, maybe a little worse. I told myself.. nothing you can do now but wait and pray, for guidance, for help with all of it. I gave it all to God and 7 months later, my award letter arrived, just weeks before Christmas. The feeling was nothing I had ever felt before, peace. Gratitude, all I can say right now, is Thank you, I am so grateful for the blessings for my family. I was able to give my children a wonderful Christmas for the first time in years.
Anyone who says that money isn’t important is wrong. It takes money to live and survive. The amount of money you get every month doesn’t come close to living a comfortable life. It’s used for housing, food, etc. However, it’s the ability to take care of yourself, and your family in this modern world we live in. The cost of things continue to rise, it’s becoming harder and harder to live. Change has to come if you are to just survive and any time you feel confused, don’t panic, it’s a natural feeling, most of us have never dealt with anything like this before and never thought we would have to make such serious decisions regarding our health and our life.
I cannot stress this enough, make sure all your medical questions are answered by your primary doctor and also make sure that your doctors are all talking to each other regarding your medical status. I knew that there are things I may never know in my lifetime. That the chances for any cure/or full mesh removal surgery are not available for me. There are questions that I will never get answered and I have come to terms with it, because it’s in an area that isn’t something you feel comfortable even talking about it.
Everyday I had to just go on trying to rise above the monthly challenges of being on public assistance to support my family, after I swore I would never do just that. What was interesting now, is that, somehow I felt ashamed. Here I was standing, in the Welfare line with an application request for Food Stamps, and Medical for me and my family, as I lost my health insurance after my last day of employment at the end of September of 2014. I later had to add Cash Aid. I have found that Procrastination is a form of avoidance/within depression, in a way that impacts ones life and as such can be viewed as a way of coping under high levels of stress.
Only after I had used all my state disability, and I missed my appeal time for my benefit through prudential insurance. I had long term disability benefits from my job, but I let my depression cause such procrastination issues that it caused more stress, this was on my own part I guess, I missed my deadline to get the doctor certification done and prudential insurance closed my claim and they stopped my benefits. I was fully disabled, but I was in a very vulnerable state. I am dealing with all my medical conditions from the Mesh, with a new medical insurance, new doctors, and struggling to get fair medical care, trying to remain strong for my family, and so much more. Just not wanting to do it became the normal for me. Also, My alternative source of income was my daughters child support and once I started receiving cash aid, all my child support went to the state and I only received $50 a month. It was a very confusing time for everyone, and my depression just worsened from there.
My mesh side effects has really been hard on my family, I really didn’t know what I was dealing with regarding my physical mesh injuries, even now, I don’t completly know what I am living with, chronic pain really limits what I can do and right now, even where I go. Being in public, it can be overwhelming, just going grocery shopping can give me stress. I also went through, yet again, a second custody hearing regarding my son’s, 1st one was in June of 2004, while our divorce became final.
My older boys’ father filed and also a separate hearing was held regarding child support for the boys, regarding a $150 a month CS order for his father to pay me every month, Judge ordered this back in 2004, $150 a month. I put in a request for that case to be closed back in 2004, because I let my ex husband talk me into it. Once that happened I thought ok, done. Then I was told that the old case had been reopened by the state. There was a hearing for that and because I wasn’t contesting child support, I didn’t go. However I still had shared custody legal/physical.
I filed for cash aid, (welfare), the state trys to figure out how to recoup the money I receive for the kids & myself every month, while all this is on, I am going through the long social security process. The judge that handled our Original divorce case was the same one that had done our divorce in 2004 and choose not to change the custody order, even said if he wanted to come back in 6 months she would relook at it, but felt there was no reason to change it and kept it at 50/50 shared legal and physical custody. I feel like I won again and already all of this has been a big adjustment on us all. (future blog for complete update on family dynamics and how mesh has really affected it).
2017 was a very emotionally involved year for our family. I know for those of us who are active on social media for mesh groups and conversations I have seen in 2017 the loss of life has increased. It saddens me because there is suffering going on. We must take a stand and say no to mesh.
I lost 4 family members, I say family members because they are, (3) not mesh related, but very close to me. Two of my cousins, John Aguilar, he was like a big brother, I grew up with him. The second cousin was married to one of my cousins, but I have known her since my late teen years, our family is close. A close family friend, who had in the recent years became close to our family, along with his sisters, Christina and Kayla. His name is Nicholas too, he passed away by getting hit by a car, around 10:30pm at night while riding his bike in the crosswalk, it’s right at the intersection of a busy area of town. These passing’s sadly happened back to back, one month after another and then one of the biggest heartbreaks was at the end of the year losing one of our Greatest Mesh Awareness Warrior, and part of our mesh family/community, Christina Lynn Brajcic (Chrissy TheFab).
The moment I saw the first post about it, I started crying uncontrollably, I just talked to her not that long before that. Just when I thought ok, 2017 can we be done, and then my son was hospitalized with kidney problems and now he is under medical care with kidney specialist and has to have a Kidney Transplant it could be in a year, maybe two. We are waiting on a referral sent in for a kidney biopsy, as soon as we know more, I will update everyone. With this going on, My oldest son Kenny, has moved back in with me, as we approach the next steps on this journey.
Christina Brajcic has inspired so many mesh patients, including myself. Her courage to tell her story was the inspiration for me to start to talk about my mesh medical condition through my blog, YouTube, social media and I know she inspired so many on facing living with these side effects. Her medical status spoke volumes as we watched live streams videos. She never quit and I hold onto that everyday when I want to tell myself I can’t, I think of Christina and so many other mesh fighters I talk with and have been getting to know. I know I can’t quit, I won’t stop raising awareness and will continue sharing my experiences. There could be others who have similar experiences and can also help me too.
I slowly started to come out of my shell I had emotionally trapped myself in. I knew if I didn’t make self changes than I could expect nothing to change. I just started to change how I see things, react, and started slowly re introducing myself back into certain places that could possibly trigger an anxiety attack, just to see if I could get through without one. Some worked and some didn’t. I still have a lot of anxiety, and suffered anxiety attacks in some public places. I never go anywhere alone, and I knew something has to change. I am not a quitter, and I want to have some quality of life and enjoy it with my family.
My family went from barely making it, to, we are going to be ok now
I can understand really what it’s like to struggle. Some Doctors look at us like liars, as drug seekers, even denying us proper healthcare to manage all of the side effects. I had family that believed nothing was even wrong with me, that hurt, confusion with doctors trying to treat my symptoms. I go to the hospital more often because of chronic pelvic pain, infections, iv antibiotics and severe rectal pain. I know that firing my previous medical team and trusting my gut was the best “decision” I ever made regarding my health and medical status.
I had to take control of my life again and after everything I have been through, I am so humbled, grateful, and blessed. Blessings to everyone and Until Next time… stay safe, my thoughts and prayers are with everyone and to the California Residents affected with the mudslides, fires, and floods.
#wearestrongertogether, #meshawareness, #westcoastmeshfighter