Living with Pain

I feel exhilarated this morning because I am back in my studio designing and making hats and head pieces and getting back to doing something I truly love has made me think of all the women who are still suffering because of their mesh implant and they don’t feel like doing anything. That is why I stopped working and began writing to share a few things with you today.

Last night my daughter and I watched a new movie called Prescription Thugs. It was a story about sports wrestling brothers who became addicted to drugs and one died from an overdose. We watched it with interest but the movie did not pertain to what has happened to the women of the world because of pelvic mesh. It was a story about people who chose to take prescription drugs and eventually, even with plenty of intervention, they don’t get off of them and some will die. Even if they don’t die, they don’t really live any more.

Because of mesh complications, I know there are many women who are now addicted to prescription drugs and without serious intervention, they hide themselves away from life and their families and they will die from these compounds much fast than their mesh complications. The movie mentioned that every eleven minutes in the United States, someone dies of a drug overdose and most are prescription drug overdoses. That is no surprise to me and I am not shocked one bit. Why?

When I had the implant surgery almost six years ago and my life went downhill quickly, I sat before the implant doctor, a woman who was quite willing to write a prescription for pain meds and antidepressant meds to get rid of me. Yes, I was sitting in a puddle of tears, but they were tears of frustration because I was in pain, had constant infections and couldn’t pee. Who on earth wouldn’t cry? When my problems were met with deaf ears, it was because I was supposed to have a simple surgery. What she hoped I would do, was walk out of her office and tell the world that whatever she had put in me, was wonderful and that would bring her more business. That did not happen after my implant and she was as frustrated with me as I was with her.

Many doctors cannot stand patients who don’t walk in their office and give them a huge pat on the back for saving us. In fact they take it as an affront and they want to get rid of you as fast as possible before you upset their whole apple cart. That makes your pain and anger worse because you have no way to react to them without more tears flowing. But I have never been a follower and when she reached for her prescription pad, I said “No”.

I have heard many women who say they are far worse than anyone else dealing with their mesh pain, when they post on Facebook support groups. That makes me laugh. Why? Because they have no idea how bad things can get but I do. So I never personally consider myself worse than anyone else because I have read and listened to hundreds of women’s stories and know things could be far worse. After removal I have also watched some women work at changing their lives and not get stuck in a hole that the mesh manufacturers wants you to. If you are on pain meds and antidepressants without cause, you are feeding their billion dollar business. How much money do they make? The movie we watched told us and I decided to find you a link to read. This is part of the link.

Big Pharma wields enormous influence over the prescription drug and medical device markets around the globe. In the U.S., the industry contributes heavily to the annual budget of the U.S. Food and Drug Administration (FDA), which is charged with regulating drugs and devices made by those same companies.

The industry demonstrates its power, political might and social influence over the nation’s governments and agencies, its health care systems, its doctors and hospitals, as well as the psyche of the American people.

The global market for pharmaceuticals topped $1 trillion in sales in 2014. The world’s 10 largest drug companies generated $429.4 billion of that revenue. Five of the top 10 companies are headquartered in the U.S.: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck and Eli Lilly.

With the help of staggering profits and 1,100-plus paid lobbyists, the industry has gained powerful leverage on Capitol Hill. From 1998 to 2014, Big Pharma spent nearly $2.9 billion on lobbying expenses — more than any other industry. The industry also doled out more than $15 million in campaign contributions from 2013-14.

Yes, when you are suffering and the lawyers except a few millions to share amongst many thousands of women especially the badly injured women, think about this as you read about donations to campaigns. Think about the fact that representatives of the people who are injured take money to fund their campaigns and they don’t give a crap about YOU or me. Here is the full link for you to read

Please do not mistake this blog as me putting any woman down for taking pain medications because it definitely is not. I know that with pudendal nerve damage, women cannot function without taking them. But the best way to try to get off of any medications is to first get the mesh out by someone who won’t make you far worse than you were. However after removal you may need medication to get you through the first stage of healing before you can wean yourself off of them.

In the past, there were a couple of times when I had to take pain medication because my pain was so severe. But I have never taken anything unless I truly needed it because I refuse to buy into the myth that I can’t handle many things on my own. Yes, after these surgeries I have been grateful for the IV meds they gave me to settle down the pain. But as soon as I was able, I did not take any more. Why? Because the more you take the more the body gets used to them and the more you need.

I noticed when I went to the E.R I was asked what my pain level was on a scale of one through ten. My first thought was “How the hell do I know?” This was because it was bad, but how bad was impossible to truly ascertain. Yes once I had to have IV pain medication at the ER because I could barely breathe or talk because of pain. Funny thing though, no one asked me to give them a statistic number. That was because they could see I was in serious trouble. But once I was able to settle down and a catheter had been reinstated to stop the agonizing bladder spasms, I did not need it any more. Was there any more pain? Yes there was, but I decided it was not too much and I could handle it without drugs. I thought about this a lot and I found a good chart that gives a definition of what they are asking you.

I honestly had to smile at this chart because when it gets to 10, I don’t think anyone needs to ask you as your blood pressure either rises or falls rapidly and it is hard to concentrate on anything. Everyone is different and we each handle pain differently. However, many of us can handle more than we do without reaching for pain medications when it is not too bad. If you want a quick fix, it is possible that quick fix will work wonderfully and then you will need yet another quick fix, far sooner. I found this chart on an interesting link about how much pain can we handle. This is a paragraph that really struck me because I have been saying that we have to learn how to live again and find something that makes us happy. Then the pain becomes less and we can live with it without dangerous drugs. This was also on the same link.

One study showed that when subjects were instructed to think of a particular thought (either a neutral activity, a sexual fantasy, or no instructions), those imagining a sexual fantasy had a higher reported pain tolerance than those thinking of neutral activities. This is another insight into the psychological nature of pain; if we can focus solely on pleasant or pleasure-inducing thoughts, we can legitimately dull our sensitivity to pain.

That leads to the final aspect of pain measurement, genetics. There is a particular enzyme (COMT) that is able to metabolize and break down dopamine, the neurotransmitter in the brain that can spread information (and pain) through the central nervous system. If the COMT enzyme is highly active in a person’s natural chemistry, then less dopamine is present, and the body’s natural painkillers (endorphins) are able to bind where those pain-bearing dopamine transmitters would normally be. If there is a depleted level of COMT enzyme in the body, then dopamine occupies those receptors and the body’s natural pain relief system isn’t as effective.

Now obviously when dealing with pelvic pain, a sexual fantasy is the last thing any of us think of. However, inflammation is huge with mesh in the body and surgeries. A long time ago my daughter bought some bromelain capsules for me. Yes it is really good for these common problems and you can read all about it here

I also found a link for you to read because many women tell me they are being mistreated when they go to the ER when in pain. I agree this happens a lot. But it is not surprising with all the abuse of pain medications and remember there are always two sides to any story. This was written by a doctor in an ER.

In the movie we watched, the director interview a woman rep who used to work in the pharmaceutical business. She was a rep for fifteen years but a death in her own family made her realize she was a legal drug pusher. Here in a YouTube video she is telling about the drugs and why they are pushed on you. She explains how the clinical trials work for these medications

How do you know if you have a problem? You may think you don’t because you go for pain management but it is possible you do have a problem. I found a good link for you to read to learn more to find out the warning signs.

I have never been on any opiates for any length of time because I am afraid of them, or at least have a healthy respect for them, so therefore I did not have to try to get off of them. Honestly I don’t know what this addiction does to the human body because I have never experienced but I did find a link for you to read about someone who got themselves off of them.

How do we process pain? This is a very good article that explains

Not every woman lives on pain medication and you may wonder how they do it. Well I have spoken to women who do yoga and I found a good article about how it helps the brain. Read it here

What can you do to control your pain? Here is a link to help

Why is ‘no pain’ dangerous to our bodies? I found such a good article on endorphins and how we can deal with pain and here is part of it.

Pain is important….it is very important and you couldn’t survive life without it. So you shouldn’t be doing things to try to “kill” it. Pain is helping you and when you feel pain it is trying to motivate you to change your behavior. If it hurts your back…for example…to bend forward … then… you should not bend forward…your pain will let you know what is your limit. Pay attention to it…it’s protecting you. If you have chronic pain…it is not because your pain system is malfunctioning…as is commonly thought in the medical profession…it is chronic because you have a chronic problem in your body that warrants the pain. Treating your pain with drugs or other pain “killing” strategies does not treat the problem.

Pain killing treatment, without identifying and correcting the problem, is a seduction (definition : to lead astray)  and is irrational and will only lead to future health disasters.

Your perception of pain is ultimately determined by your endorphin system. Endorphins are your body’s only pain blocking chemicals. They are always playing a part in your experience of pain…24 hours a day. You might be able to say that they are your “pain regulators”. They are very powerful. They are at least 200 times more potent than morphine, which is the most potent pain killer drug known today.

Here’s how they regulate your pain. Pain is what keeps us from destroying our bodies. Our bodies are fragile and can be easily injured. If we didn’t feel pain as the result of our injuries we would never avoid injury producing behaviors and eventually this would overwhelm our body’s reparative capacities and facilitate our death. If you broke a bone in your leg and it didn’t cause any pain, you would continue to walk on it unaware of the injury and eventually your leg would become a bloody stump. You can read the entire link here

Bladder spasms are a huge problem for many women because of constant infections, or a removal doctor who literally ripped the mesh away from the bladder, or does a woman serious injury while performing a cystoscopy. I know for a fact that at UCLA if you are in too much pain when they try to do this test, they stop and only do it under anesthesia and they are experts in doing it. However women have told me of their horrendous experiences at the hands of some doctors in their office while being given this test. Permanent damage can result by someone who has no clue what they are doing.

Can acupuncture help with bladder spasms? I have never tried it so I cannot say but here is a good article for you to read

Now I did talk to a woman last night who has pudendal nerve damage and she tried all of these things, like many women who have this kind of nerve damage, but nothing worked for her. In this case, you don’t have a choice but to take them. But this blog is written for those who could take less pain medications than they do and I am writing it to raise awareness so that the pain medications do not kill anyone who could survive without them. It is NOT an admonishment for anyone who really needs them.

After my surgeries I began thinking about how I could get myself back into life and live again. I am restricted by things my body does not allow me to do, but I am never restricted by my mind. Ototoxicity from an IV drug is really hard to live with, but it has never stopped me from retraining my brain so I can do the things I love such as designing and making things. It took me a while to use a sewing machine the way I always did, with precision and skill. But I did it. I have made tiny miniatures and loved every minute. I find concentration on making things stops me thinking about my own pain and I can enjoy my life. Back in February 2014, I was still training my brain and I wrote a blog about finding your happiness. Here it is

Moving forward is not simple and every day can be a challenge. But small baby steps will finally help you reach a goal. As you achieve whatever makes you happy you will find euphoria in those achievements, just as I do. I learn so much from watching our rescue dogs because they never give up regardless of dragging a leg around that is injured. We do help them by giving them important supplements that can help them recover sooner because we learned this for ourselves. It is not a quick fix but it does work.

The thing is many of these drugs can have very serious side effects and can restrict your life. So first get the mesh out by someone who has experience. Then slowly bring yourself back to life and find a way to live with the life you have now. I wrote this blog about how dangerous some of these medications are and now you can read it and assess your type of medication to see what you can do. Here it is

Just remember, whatever you take, be sure you really need it. Don’t let your family find you dead……………… That memory can ruin their lives too.

If you want to see the movie I just watched, it is at movie theaters now and you can
see the trailer here

2 Comments

  1. Anonymous

    The new CDC guidelines for doctors restrict opiates for ANYONE OTHER THAN CANCER PATIENTS. Who in the Name of God can decide that mesh-related pain isn’t as BAD as cancer pain? Another nutty decision by an irresponsible government.
    I watched a documentary about a woman who could not stop eating her foam mattress. Should we now outlaw foam mattresses?

    Reply
  2. Sugar Sue

    Linda. Thank you for info.

    Reply

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