Why do I have energy at times when I can rest, but when I rest I have too much energy?

 

Hello and Good Morning/Evening and Welcome to Afterthoughts, (WCMF).  Since I missed Manic Monday and was late with Sundays and Smalltalk, I thought that talking about chronic pain and fatigue would be a great topic, plus, some things I try to do to make my nights rest as comfortable as possible.

 

The last few days I haven’t been feeling that well, and after going grocery shopping on Monday, then by the time we were back, I felt like I ran the mile.  So exhausted, and also getting a little bit of house work, had me in bed, not just in bed, but passed out asleep.  Apparently, I was that tired and this lasted until today, just eating, restroom, sleep.  I don’t know what is happening, sometimes too much sleep is a sign of infection somewhere, but somehow both my appointments today canceled.  Gratitude, that is what I have to say is Gratitude.

My dad came from out of town to take me to the store, we talked over lunch and went to do kids back to school shopping.  I really was so tired, but spending that time with my Dad, was worth it all.  I am really grateful to him, my mother, and it was just a lot, clothes shoes, supplies, thank goodness I had my daughter there to help out.

When pain like this acts up, I feel so tired and lacking of any energy.  I mopped my kitchen and dining room, the day before yesterday.  So today, now really exhausted and my arms and shoulders, into my back hurt so much, but I am fighting to work through it, I can’t work out like I used to, but I am going to push through. Yes I have kids, however it sometimes easier to do the chores because I am picky, but I do enlist them for help all the time.

Now that my schedule is all out of place, I am going to put it back together.  Try to sleep a normal and reasonable amount of time, and just make some adjustments.  I have been cheating on my coffee limits, so I must go back to 2 cups a day and stopping by 3 in the afternoon.  When I worked I used to drink Coffee All day and now I can’t do that anymore..  I will be up all night and my pain is really bad.  By doing a couple of things at night, tea (relaxing) easy listening music or something to watch on the TV, doing things that relax me and not bring stress to me.

Before my Mesh Implant Complications, I had an amazing life, that I worked really hard for.  Now, I am struggling but I am not broken either.  I know that there isn’t anything that can be done now, so I just take things slowly so I don’t want to get hurt.  Everyday I get with my family is a blessing ; and I am going to beat this mesh, as long as I am alive, won’t let it beat me.

Finally when I took the picture (above: me) I really didn’t think anything of it, thought it was different, but the truth is I don’t have any teeth right now.  At my age, my teeth, they all just kept breaking down and now I have to get false teeth, in the process of it now.  I ended up with abscessed tooth and I have emergency surgery to have the rest removed.   Now I am seeing people around the world talking about how they lost their teeth after mesh was implanted. I don’t know for sure if mesh implants causes teeth decay, but if it does, just another thing to add to the list of side effects that we as patients, are suffering with.

Thank you to everyone following my blog.  After accepting that pain was going to be a part of my life forever, I started slowly changing things within a comfort zone, mental and physical.    Ex” I mopped both kitchen and dining, now I am going to declutter and start the remodeling.  Just to clarify, we are renting so nothing major than just redecorating with updated pictures.  I want my dining room to look like an old place friends can come and enjoy with us.

My Cat, Sassy, she likes to sit everywhere.  Most of the time when we have company over, my kitchen table becomes the heart of our home. This table belonged to my grandparents on my Dad’s side, and I would love to restore it, sometime in the future, but redoing my dining room will be fun, and  It will  keep me distracted from the pain hopefully, and maybe I can get some fun stuff done.  My pain is nuts, so hopefully I can get some relief and not have to go a hospital.  😦

I usually do my VLOG, Impromptu on Thursdays, so my plan is to be back a little earlier to bring you my VLOG, my readers and listeners, I would love to hear your idea’s.  This is if my pain doesn’t interfere again.  I know it’s not easy to talk about having a TVM, but I believe we are stronger together.  Transvaginal Mesh Implants hurt people both physically and mentally.  If I can’t get medical care from my doctor tomorrow, off to the emergency room.  If I go, it will be because I felt I had no other choice because of the pain, that’s usually when I have to go.  If that happens I will let everyone know if I can what is happening.

I would like to give a special Thank You  to everyone for your concerns & support, A Special Thank you to my family, the support helps m  Hello to my new followers on social media and here on Word press, I am happy that I can share my TVM Mesh Journey.  I couldn’t do this without everyone on social media and having my blog, please share it, if you know anyone who suffers with the side effects from a Transvaginal Mesh..  When I started this, it was just a Facebook page, then I decided to do a blog on my mesh Journey, from there oh man, everyday the numbers keep going up and I am so grateful for you all letting share with you my stories, which isn’t finished, I think I am just getting started.  I have been through so much and I want other patients to know they are not alone.

I love you all and blessings to you,

You can find me social media and Google +.  Going to try and get some answers on my insomnia and until tomorrow night, thank you all for reading.

Michelle Hedgcoth, Co-Founder of westcoastmeshfighter, graphic designer, writer, Transvaginal Mesh Warrior & Survivor,

 

 

What kind of healthcare should I expect now that I am on Medi-Cal?

Hello and Good Evening/Morning to everyone and welcome back to Afterthoughts, westcoastmeshfighter.  Stuck between two worlds living with a Transvaginal Mesh Implant.  The last few weeks have been tough, I personally felt like my heart strings were being pulled so hard, that maybe I couldn’t take it, also dealing with my conditions and trying to be a mom to five teens.  The worst was not being able to do things that I used to do.  I have been trying for 4 years now, to try and rise above what was happening, so  it starts multiple PCP’s and 4 Urogynocologists, many blood tests, IV Antibiotics, pain meds in hospital out of the hospital because abdominal pain was so bad and had a responsible record with my prescriptions.

Neither My Primary Care Physician and Gynecologist that was treating me at the time had explained why, my new doctor left the women’s department I had a mesh implant surgery, I believe they were acting in my best interest and this happened.  I accept that because I really agreed with it, with the exception that more investigating should have went into the mesh devices and they should have been conducted first and Now Look at the Mess they have Made of Us and our Lives as We Knew It.

Our Healthcare, now I can’t give to much about what I found regarding laws, because I am not a lawyer, however at the end of this blog will be web info on my sources.  I feel that as a Patient, I investigate so much, we are not getting told anything, No letters with explanation and  we should have a lifetime life coach or a class on loving yourself, helping yourself and doing what makes you happy right???

Patient Rights, I found the info on Patient rights, from local, state to federal.  There are advocate representatives that are supposed to help family’s due to a family member becoming disabled.  I also reread the ADA and nothing has changed there, I will makes some calls and see where that takes me.

Onto our Healthcare, I started Medi-Cal when I had to leave my employer. That part was difficult and I knew that I would be forced to go onto it What is missing here is justice, Some have been robbed of their enjoyments, life, etc.  I don’t go to the store alone and because of lifting, I usually have a family member with me to help, I just started to do things that are less strenuous., so that overwhelming feeling doesn’t come on to strong.   I still am getting Anxiety Attacks and can’t figure out why.   At first, I used to go to county clinics and the experiences worse than good.  I was always seeing a different doctor and 2 different gynecologists.

With every doctor appointment, came more procedures, more tests, and physical therapy, more this paper says this and this paper says that and it’s acknowledged that I am permanently and physically disabled and must have a care giver.  This pain I experience is nothing good, it’s pain, so painful I go to a hospital and then treated like nothing is wrong with you.  I was forced to file appeals with my healthcare insurance company and after I received my letters that they were investigating and I never received nothing back, no letter of explanation the doctor was blaming insurance and vice versa.

I will blog more in the future because things are constantly changing.  I requested a new Nurse Case manager, Gynecologist and Internal Medicine 1st call.  I have decided that I need to be able to do certain things just to make things a bit more comfortable for me.  I will be making an appointment with disabilities advocate for California residents.  My family has been torn apart and as they continue to get older, I pray there is a way I can get us all back together.

If you need help, you can file a grievance and switch doctors until you find someone who wants to really treat you instead ignoring the issues, and refuse to treat because they can’t see what is wrong and they had me doing injections.  I have been always from the prescriptions for a long time, the county clinics have done away from, the,/

Ok so here in California, if you are not working you may qualify for food stamps, medical insurance and cash, also we have plenty of food banks where you can go and get some food and clothes for you and if you  have a family they may be in need too. I can’t even imagine the emotional roller coaster, my heart goes out to you with everything you are already dealing with.

I often wish that we could ban together , however time, location and distance places a part as well.

When u have to the doctor for 10 years of appointments, (when I was with private insurance) tests, conversations about life and what I wanted to do and after that I was referred to another urogynocologist and do all follow-ups, when I first received this info, I was shocked because  I really had no help, no ideas and everyone I had called said they programs but many of us don’t qualify due to credit, so if have someone helping you, I don’t know about all of you. but I really thought my some of my relatives would help us out however, everything worked out.  It’s interesting and puzzling that the answers are right of me, but I get so stressed.  Anyways, I contacted my insurance options and then I received treatment for this at least, Mesh Still a ??  This weekend is coming and I may do another video on different ways to comfort our selves.  #pamperyourself

 

If you are interested in getting your insurance to help you with your treatment, give you the information and you need to get yourself some love, we all deserve it,  call your insurance and request a Nurse Case Manager for takes about a month or too before you are, so patients is going to play a big role, but it’s worth it in the long run.

As always I want to remind everyone that I am not a lawyer, doctor, medical professional, however I am a patient living with the underlying side effects from this product.  Everything I share with you is just information and my Personal Journeys living with a Mesh Implant in your body your rep should walk you through the process.  We have rights as patients for care.

Thank you all for reading until next time… stay strong, for your Mesh Family is rooting for you.

Michelle Hedgcoth, Co-Founder of westcoastmeshfighter, #tvmwarriorandsurvivor

Below are some important facts along with their information, for Californians I hope these public resources are available to you.

Disability rights for CA
California’s protection & advocacy system
For legal assistance call 800-776-5746. For all other purposes call 916-504-5800 in Northern CA
or 213-213-8000 in Southern CA. TTY 800-719-5798.

Home About & Contact Us Services Donate In the Legislature Press Publications & Resources
CALIFORNIA OFFICE OF PATIENTS’ RIGHTS
Disability Rights California
1831 K Street
Sacramento, CA 95811
Telephone (916) 575-1610
Fax (916) 575-1613
COPRinforequest@disabilityrightsca.org

WHAT IS PATIENTS’ RIGHTS ADVOCACY:
Advocacy is the process of promoting and representing patients’ / individuals’ rights and interests through direct assistance, monitoring, training, and policy review. California has a legislatively mandated Patients’ Rights Advocacy system made up of three components:
California Office of Patients’ Rights
State Hospital Patients’ Rights Advocate’s
County Patients’ Rights Advocates

WHO ARE THE PATIENTS’ RIGHTS ADVOCATES:
The Patients’ Rights Advocates (PRA) in the state hospitals are employees of Disability Rights California.  The California Office of Patients’ Rights is contracted by the Department of Mental Health to ensure that the treatment and legal rights of people receiving mental health treatment are maintained.
Disability Rights California is a nonprofit agency that provides legal and other advocacy assistance to people with disabilities.  Disability Rights California began protecting the rights of Californians with disabilities in 1978.
Under the contract with California’s Department of Mental Health, Disability Rights California operates the California Office of Patients’ Rights (C.O.P.R.) to provide support to Patients’ Rights Advocates in the counties and employs a Patients’ Rights Advocate at each State Hospital to directly advocate for the rights of people with psychiatric disabilities.

The legislative mandated duties of the Patients’ Rights Advocate are:
To investigate and resolve complaints received from individuals about violations or abuse of their rights and/or to cause the investigation of such complaints.
To act as an advocate for individuals who are unable or afraid to file a complaint.
To monitor facilities for compliance with patients’ rights, laws, regulations, and policies.
To train staff in areas regarding patients’ rights, laws, regulations, and policies.
To assist staff in ensuring that all individuals are notified of their rights, including the right to contact the Advocate and the California Office of Patients’ Rights.
To act as a consultant to mental health professionals in the area of Patients’ rights.
To act as a liaison between the facility’s advocacy program and the California Office of Patients’ Rights.
In addition to the legislatively mandated functions above, the DMH contract delegates to the California Office of Patients’ Rights the responsibility for coordinating the hospital patient complaint process, to include the intake and tracking of all complaints, identification of patients’ rights issues for advocate investigation or response and the referral of all other complaints to appropriate program/department staff for response and/or resolution.

Our main office is located in Sacramento (address above)

Main Office Staff
Michele Mudgett – Director
Ann Coller – Patients’ Rights Specialist
Agnes Lintz  – Patients’ Rights Specialist
Jame Chang – Appeals Coordinator
Griselda Alvarez – Office Manager
Atascadero State Hospital
Manuel “Lucas” Campos, Patients’ Rights Advocate
Kathy Kalem, Patients’ Rights Advocate
Coalinga State Hospital
Daniel Wagoner, Patients’ Rights Advocate
Nayeli Estrada, Assistant Patients’ Rights Advocate
Metropolitan State Hospital
Warren Rogers, Patients’ Rights Advocate
Maria Garcia, Patients’ Rights Advocate Assistant
Napa State Hospital
Kelli Hagstrom, Patients’ Rights Advocate
Melina Llamas, Assistant Patients’ Rights Advocate
Patton State Hospital
Priscilla Torres, Patients’ Rights Advocate
Paula McCord-Watier, Supervising Advocate Specialist
All Rights Reserved © 2012 | For legal assistance call 800-776-5746 or complete a request for assistance form. For all other purposes call 916-504-5800 (Northern CA); 213-213-8000 (Southern CA). TTY 800-719-5798. | Disclaimer

office of patients rights sacramento
office of patients rights california
mental health patients rights california
patients rights advocate mental health services
state of california patient rights
patients rights phone number
california patient advocate
california patient rights and responsibilities

UNTIL NEXT TIME… ENJOY LIFE FORE, YOU CANNOT GO BACK TO RETRIEVE IT!

 

 

How learning how to rediscover loving and appreciating little moments living with a Transvaginal Mesh Implant.

Hello and Welcome to Manic Monday, I hope everyone is having a great Monday so far.  My Monday reminded me of times that when I had the ability to take our family on trips and enjoy life.  Now everything has changed, from how we spend our days, to life in general.  Going through a severe depressive state with extreme anxiety to starting to let go of things and remember it’s ok to enjoy life, even with a disability.

I have been really fortunate to have been able to take my family on trips and spend time with them just going out to dinner or shopping with them for new clothes, supplies for school, shoes, fun things that is popular.  At one point all my kids with the exception of my youngest, a little to young yet, but yes, I did so much with them.

Living with this disability is the biggest challenge I have ever experienced in my life.  Sacrifice has been so hard, my family and I have suffered in ways that the mesh companies couldn’t possibly imagine, while they are sitting there able to live a rich life, Anger and Sadness doesn’t even come close to how I am feeling.  I have always believed in what goes around, comes around and I am hopeful that justice will actually come in and see what is going on with how we as patients are being treated, lack of medical care and not anywhere enough on the amounts of settlements for the rest of our life.

Today was exceptionally hard with pain, hopefully it won’t be a long night.  I haven’t been able to shake it and it could be a number of factors, however I go to see my Doctor this next month.  One thing I have done is Journal.  I have journals for everything that has happened since the beginning of all this and if I know I am going to a doctor any doctor, I take my medical files with my journal and ask questions.  I see my doctor every 3 months, and since my pain is really bad, I just have to relax and realize hey, it’s ok.   I am doing my best and that is good enough.

Yesterday’s blog post was really deep and although it was really difficult to type about, I believe that the truth will set you free from things and letting go of that disappointment and anger, it was hard to do, but now I want to live happy and see what else I can do to try to bring myself to a reasonable, low pain level.  Goals.. Every week I give myself realistic goals to achieve and it helps me to get through the week.  Since I am still trying to make sense of everything, I will keep tonight’s blog post short.

My new case manager called this morning, so half asleep I kept our first conversation fairy lite.  Just deal with a couple of easy things is up first and then we will take it from there.

In conclusion I wanted to share this with everyone because it’s touched my heart so much, I really am having a hard time not crying because with the recent passing of my cousin for some reason my outlook on everything changed.  I am a firm believer that when u put out positive energy, it comes back and we have had that happen for our family with clothes, food, etc.   I am so blessed and grateful for all of our family and friends supporting us emotionally and their help.  These are the important things to realize and anything too big emotionally, I give it GOD and I will touch more in detail in future blogs, but for now.  Gratitude!!!!  It wouldn’t be Manic Monday without a Dream Bedroom… Goals!

Thank you all for reading and Thursday will be a new VLOG.  I haven’t been able to post on here due to restrictions with the free account for WordPress and would love to do more, but until I start to pay, I have found other ways to share videos.  Please feel free to find me on social media. YouTube is westcoastmeshfighter, yes we have a channel and I vlog once a week right now.  Thank you all for your love and support.

Michelle Hedgcoth, co founder of westcoastmeshfighter.   #tvmwarriorandsurvivor

 

 

How do I create a new happy adjusted life living with Transvaginal Mesh limitations?

Hello Good Evening/Morning to everyone and welcome to Afterthoughts, for Westcoastmeshfighter.  Tonight’s subject is about your self worth and work.  Most of us were different people, with different outlooks about our life and what we wanted it to be.  Then the mesh implants started to cause severe pelvic pain, constipation, infections, auto immune disorder, mesh revisional, physical Therapy for my Pelvic Floor.

Cool graphic I found online., Coffee in my favorite color.

So here begs the question:  How can we live an enjoyable life living with chronic pain?  Well if I had the entire answer, I probably would be living a whole lot better than our family is living right now,  being able to feed my kids without worry, have money pay for a place in a good neighborhood with a good school and just to live the life I used too.  At some point I had to admit that I was human and get some help to deal with all the stress.

Ok in reality, just having a place to live is a blessing and constantly we make it through situation that could have avoided if I never became injured.  I have prayed and prayed for guidance from god.  One you awaken your inner soul your truth will guide you to better things, but change always has to happen.  Unhealthy decisions will never get you to a place where you can say you earned it.  I can’t do that anymore, but I know I can help others.

 

First and foremost I wanted to say is I am catholic and I want to thank God for the many blessings he has given our family as we continue with the journey.  I thought to myself, so you lost your life everything.  I really thought about this and there are a couple of ways of approaching this controversial  issue.  I know I have made mistakes along with way regarding medical decisions, however I cannot go back and change anything, so I choose to move forward.  My pain is really bad so I will wrap this u.

End after Graphic.

Cont…

Living with chronic pain isn’t easy, it seem that as my pain is getting worse, the more I want stay in bed.  I am working on changing these behaviors that are not healthy for me or my family.  I have already made the appointment to go to my internal medicine Doctor and I received a letter indicating that my urogynocologist isn’t’ going to treat patients in our dept. anymore@ UC Davis,,  They did offer alternative doctors and will have to call later this morning to deal with that.

It’s hard to love yourself, I know not everyone can shut down their emotions or pain, so it’s a trial and error.  I have been through so much and I am living life day by day instead of planning every little thing. Now I have started to have memory loss and I can’t remember some of the things that has happened in the last two week, this has been going on for a while now.  Some of my days are good and some are terrible. Each person has different disabilities and we can no longer work.  What I don’t understand is how can this be.  I haven’t gone to work since September 30, 2013 due to medical reasons, so I am rehire able, however my problem isn’t fixed and I don’t know if it will ever be.  I am really trying to make the best of it all.

it doesn’t stop me from trying.  I just go with the flow with things, I have a  bag packed just in case I have to leave my house in a hurry or go to the hospital.  I try not to plan things that I can’t over come.

 

It’s hard for anyone to understand chronic pain unless of course you live with it everyday.  I Encourage everyone to make sure you have a support system like family and friends to help you.  I also encourage that you have a plan just in case, It’s not easy but a lot of towns have food banks know that catholic churches gives you two nice bags of food and fruit and breads and deserts and they have clothes..  I encourage everyone to check for that in your home town, it helps that they can help out families in need.  I hope you all  have a wonderful week and I will be back tomorrow with Manic Monday… Hugs and Blessings Mesh Warrior.

Thank you for reading and until next time mesh warriors..

Mrs. Michelle Hedgcoth, Co founder of WCMF, advocate for patient rights and Humanitarian for chronic pain patients.  Thank you again. #westcoastmeshfighter, #tvmwarriorandsurvivor, #wearestrongertogether

 

Hot Summer Friday Nights living with Transvaginal Mesh?

Hello and Good Evening/Morning and Welcome to Afterthoughts, West Coast Mesh Fighter. 

After a long week, I am happy to blog and talk about this heat wave we are having here in California.  It is ridiculous hot and staying in a temperature controlled room is imperative now because when I get too hot or too cold, everything seems to hurt more???   It’s now been three years since I have been able to go the beach (2hr) drive from here.  The Beach is my favorite place to relax and unwind.  I am not sure about everyone else, but my pain levels are really high and I almost had to go to the hospital a couple of nights this week, but thank you God, I am home. I really love the summer time because it’s so calming and relaxing that I can really get into dealing with my Chronic Pain.  Once I figured out how my body adapts to weather changes, I really had to make major changes.

Hard Steps, but I work on this everyday.  It’s really easy to get into a mood where my pain and emotional state end up running me and it should be the other way around.  I spent almost 3 years in a deep depression.  I cut off all family and limited my contacts with friends, because I can’t do a lot of things the way I used to anymore, also it was assumed that I was addicted to drugs either prescription or recreational drugs (which I have never had an addiction problem) and that I was somehow making it all up to avoid working.  I have worked from the time I was 15 1/2yrs old and I actually am irritated because I can no longer work.  One thing I have come to realize is that having a mesh implant it has given me more patience and forgiveness for myself.

I was trusting my gut instinct and because I didn’t really know what was happening to me then,  I knew I couldn’t really explain to my family and friends exactly what was going on and that alone was a lot of anxiety and stress.  I feel really disconnected from my prior life as I knew it, now.  I did a lot of crying and a lot of soul searching, praying to God for guidance, then I knew what I needed to do.  Having a Transvaginal Mesh Implant has caused a lot of side effects.  My auto immune condition, fibromyalgia went from being manageable to completely out of control

Foods to avoid this summer and Foods to love

Anything that can cause Gas pains:

1. Broccoli, beans, cheese, dairy, whole grains, Brussels sprouts, broccoli, cabbage, asparagus, and cauliflower are known to cause gas.  I definitely would talk to my doctor or nutritionist about what foods you should illuminate.
2. Fruits such as apples, peaches, pears, and prunes contain the natural sugar alcohol, sorbitol, which the body has trouble digesting. Many fruits also have soluble fiber, which is a type of fiber that dissolves in water. Sorbitol and soluble fiber must both also pass through the large intestines, where bacteria break them down to create hydrogen, carbon dioxide, and methane gas.  I was really taken back because prunes help pass things along.
3. Sodas and other carbonated drinks can add significantly to the amount of air you swallow. When air gets into your digestive tract, it has to pass through somehow. This causes burping and may also increase how much gas you pass. Swapping soda for juice, tea, or water (with no carbonation) may help you reduce gas.
4. Processed foods are packaged goods, such as breads, snack foods, cereal, and salad dressing. These contain a variety of ingredients, including fructose and lactose. This combination can lead to increased gas.

Summer time includes so many things, flip flop weather, and having family bbq’s to water/theme parks and having to watch what I eat is tough, but for my digestion system I am willing to make the sacrifice’s.  I love salads with fresh vegetables and organic dressings nothing too heavy.  Watermelon, oranges, grapes… I have it on a schedule where I can eat some things and take it easy like every other day, but it varies.

We digest food differently so it’s really a process of trial and error to see what food affect you and how they affect you.  I changed my milk products to Lactaid and most Coffee Creamers are being made where these ingredients are not in them anymore.  Finances have really played a role in all of these things that I do to make life a bit easier.  I am looking forward to a trip to the beach soon.  Most of my pain comes from the rectal side, I get inflammation in my Colon, the pain is unreal when it acts up which is everyday.

A new video will be coming soon, it is a new project I am working on continuing it and It’s a lot of fun to do.  If there are any questions, or comments, please ask away.  I will always do my best to either get answers or investigate further.

I will definitely be blogging on Sunday’s and Smalltalk, Manic Mondays and with all the stress that comes with battling this complicated condition, there is room for some happy.  Without happiness, misery will surely take over.  We are here and it’s ok to live our life’s as best as we can.  Good is good enough and forgiveness within my self helps me to walk through this journey with purpose.  Thank you all for reading tonight and I hope everyone has a wonderful weekend.

Yes it’s time for Meme of the Week.   I did two this week.  I hope you like them.  If you have any suggestions on mesh meme’s please comment with your ideas. 

Ref:  free images, meme creator,

http://www.healthline.com/health/foods-that-cause-gas

 

M. Hedgcoth, co founder of WCMF.  Transvaginal Mesh Warrior and Survivor. God bless you.  Dedicated to John Aguilar, Rest In Peace Cousin, you will be missed everyday.  I love you. 

John John Aguilar…

 

 

 

How Do We Shake Sensitivity Living with Transvaginal Mesh????

Hello and Good Evening/Morning to everyone and thank you for stopping by and reading tonight.  I wanted to talk about sensitivity and trying to cope in the world we live in.  We all know what is happening worldwide.  I have seen a lot in my 41 years however it seems like with everyday that goes by something worse than the day before happens.  Humanity is really so important, caring for others and giving us the right to be who we are has definitely become a huge issue.  I know what it is having a disability people cannot see and how challenging it is to live with it, but I still have fight in me so bringing awareness regarding Depression and Anxiety is a key in helping patients to feel supported.  I have my TVM, ADHD, Depression, Anxiety, Dyslexia, OCD, Fibromyalgia and I am a nervous wreck (diagnoised in 07, before my tvm surgery), and now I am a big mess, but working on it.

I never thought I would be disabled at my age, but I am.  Living with TVM has my defensive and sensitive triggers going off in different directions all the time and I have to stop and remember that we are all made up differently and what it seems to one person, may not seem so to another.  I have experienced being bullied, lied to, attacked emotionally, not believed, and so on… (another future blog I will get into real stories that I experienced as a child), but what I want to say is to please remember that we all have feelings and most importantly we are all not perfect.  Be kind to each other and we all don’t know what each of us are dealing with on a day to day basis , but I am grateful that I know I am not alone.  Thank you Mesh Warriors and Angels.

This week I was reminded of just how precious time is because one of my closest family members is really sick and is getting ready to go meet God, anytime now, he is in hospice with a lot of our family around him, he is comfortable.  It’s been such a rough week emotionally and it has made me a bit more sensitive than normal, which for me I am already really sensitive.  I grew up with my cousins being more like siblings, so this is really hitting me hard.  He is the oldest of 10 of us and I really looked up to him.  He went to UOP to be a teacher.  He is one of the smartest people I know and did so much volunteer work on his off time, from fundraising to coaching sports teams.  Father of two beautiful children and I am sorry I am feeling really numb right now and I want to say I saw this coming but I didn’t, and it doesn’t make it any easier to cope with.

By nature I am already a very sensitive person and it took a long time to be brave enough to go public with my story.  I have found there isn’t a lot online regarding Social Anxiety Disorder but because it goes hand in hand with depression and chronic pain I want to discover more about this disorder and the coping support.  My cousin John John battled everyday with his own things but was always volunteering, or working and still continued to show us that no matter what we can overcome and rise above the obstacles.

I know we all deal with our issues separately, however one thing I learned is no matter we are facing we can still make a difference in someone’s life, he did.  Below is a photo of me and him, it was at my cousin’s (his sister) 70’s & 80’s family birthday party a few years ago, he was Michael Jackson and was our DJ.   My cousin was the type of person to celebrate life and with that I want to wish everyone a safe and wonderful weekend.  Be good to each other and Sunday’s and small talk will be back tomorrow night.  Life is too short, tell your loved ones how much they mean to you, you may never know when it will be the last time you see them again. 

 I love you John John (Johnny Aguilar), so much….. ok where is my tissue box.

God bless you all and thank you for coming by!!!  Mrs. M. Hedgcoth, #westcoastmeshfighter, #tvmwarriorandsurvivor

Coffee Break for Writers,

Hello everyone,

I have never been a writer, but I have always wanted to.  After about 5 plus years of darkness, I have emerged a different person.    As I am sitting here listening to Tina Turner, what’s love got to do with it, drinking an amazing cup of coffee and smoking a cigarette.  I think to myself “can I approach writing the same way as the song I am listening to?, in thought, love has everything to do with why I am starting this blog and then again, no love at all.  I think to myself… How can I address the public on a very turbulent private journey in my life, and in the spirit of helping others.

I have been silently coping for the last almost 6 years, 7 1/2 since the surgery.  Now, I know there are thousands of us out there possibly feeling the same way.   In this afterthought, because I can’t possibly put them all on one post, I am not even close to writing a memoir yet, but seeing as this medical subject isn’t being talked about enough, I want to courageously, compassionately, and honestly with empathy to the many patients, family members and friends, help deal with, and attempt to cope with severe chronic debilitating pain and suffering from the underlining side effects of a Transvaginal Mesh Implant to attempt to fix POP, Pelvic Organ Prolapse.

I have been through, what I would call an awful way to live, pain everyday without interruption unless I am sleeping and this is the only time I don’t feel pain.  Before my surgery, I was a normal person, working full time, full time wife and mother, and had a social life, on top of the world.  That all seems amazing right?  When you think to yourself, it can’t happen to you, nah, well guess what, it can happen to anyone who had this procedure done.  I would rather we help each other.  Emotional support is just as important as the physical limits.

Until I do more research on disclosures etc.. I will not be naming the manufacturer or mesh kit type.  I can tell you, I have already been through the manufacturer settlement process.  (other subjects can be discussed in later blog posts).  I think tonight, hot tea, heating pad and a good movie is in order.  Please comment and feel free to ask me anything you like, I will do my best to respond promptly.  To my mesh family and friends, good night, thank you for reading.  Hugs and God Bless you.  Mrs. M. Hedgcoth.