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A post from my facebook page….please share:
I have to speak up today. I will be doing this on all of my pages as this is an issue near and dear to my heart. I do not agree with Trump’s decision to pull out of the Paris Climate Accord. Although there are many reasons to be upset by this decision by Trump, my personal concerns have to do with adenomyosis and endometriosis. As most of you know, I have written two books on adenomyosis. I have done a ton of research (numerous scientific studies through the NIH) and have learned that xenoestrogens (man-made chemicals) in the environment have been implicated in many reproductive disorders. This is not speculation – this has been shown through well-controlled scientific studies. There is great concern that these xenoestrogens, which raise estrogen levels dramatically, are one of the possible players in adenomyosis and endometriosis. Trump’s decision today will more than likely lead to more and worsening cases of these two disorders. Chemicals in the environment are already linked to increases in cancer – ovarian, breast, and endometrial are just a few. I was so disturbed by his actions over the past couple of days that I posted my concerns on his twitter account. Within an hour of posting, my comments could not be found. I posted again, and again they could not be found an hour later. I have since learned that people are being blocked from his twitter account if they post something that disagrees with his views. I also wrote a letter to my Republican congresswoman, Barbara Comstock, detailing my concerns over this administration’s environmental policies and explained in detail how these decisions could adversely affect women with adenomyosis – hoping that since she was a woman, she might be more empathetic. I did not get a response. So, I am posting this here and on all my pages to let women know that this administration does not seem to care one bit about women who are suffering from adenomyosis and endometriosis. They also don’t seem to care at all that there is science backing these concerns. They don’t want to hear it. I tried my best to get my point across, but they prefer to turn a blind eye to it. I am incredibly disappointed and upset that this administration has made it so much harder for women who suffer from adenomyosis and endometriosis by promoting policies that will increase xenoestrogen levels in the environment which may lead to an increased incidence of adenomyosis/endometriosis and worsening symptoms of those already suffering from these horrible disorders..
Fox News Lawsuit By Journalist Who Wrote Endometriosis Article, The Healthcare Bill, and “Whited Sepulchres”
I have tried my best to stay out of politics recently. In January, a long thread on my Facebook feed ended up in several heated arguments, and after that I decided to refrain from political commentary on my page. I just watched as Trump and his administration seemed to make mistake after mistake, and it seemed like every morning, I woke up to some kind of ridiculousness that left me shaking my head. At the same time, I watched as one by one, Fox News correspondents and management left the network due to sexual harassment claims. It was amazing to me to see a news channel that I watched religiously slowly fall apart. I was extremely disappointed.
Well, today I read something that crossed that big red line in the sand for me. A Fox News reporter is now suing the network because after she wrote a report on endometriosis, she was the victim of discrimination. Ms. Diana Falzone was slowly pushed out of her position at Fox News after she disclosed her uterine disorder in her report. You can read the entire article here:
I am the founder of Adenomyosis Fighters, an online group that helps women who suffer from adenomyosis. This disorder is closely related to endometriosis, and the two disorders have similar symptoms. Both have to do with abnormal menstruation – very heavy and prolonged menstrual bleeding, excruciating abdominal pain, sometimes as severe as the last stage of labor requiring narcotic pain medication, severe bloating that can resemble a three to four-month pregnancy, bowel issues, bladder issues, and even infertility. I have spent the last five years fighting for women who suffer from adenomyosis, so for Fox News to discriminate against Ms. Falzone for this article caused me to become extremely angry. I am livid about this and hope Ms. Falzone takes them for everything they have!!! These men who discriminated against her don’t have a clue. They have never, ever had a period and have never had a baby. They have ABSOLUTELY NO IDEA what it is like to suffer month after month – anemic from blood loss and with such horrible pain that a woman has to crawl to the bathroom for fear of passing out! Shame on you, Fox News. I will no longer watch your shows because of this reprehensible behavior.
Fox News is known to support the Republicans, many of which are evangelical Christians. For crying out loud – if you are going to support evangelical Christianity, at least TRY to live by Christian teachings!! Compassion is one of the main teachings of Christianity, so why do these executives at Fox News discriminate and treat Ms. Falzone so badly when she opens up about her struggles with endometriosis?? Is that what Jesus would do? ABSOLUTELY NOT!! Why do evangelical Christians support this network when the execs have been involved in sexual harassment? Who the hell knows!! Sorry to say this, but based on what I’ve seen, I think lack of education plays a role. Or maybe it’s just ignorance.
Yesterday, the controversial health care bill was passed in the House of Representatives. This bill will basically gut Medicaid and will give states the option of a waiver regarding pre-existing conditions. This will hurt millions of Americans. So many people are now worried if they will have sufficient coverage since they have a pre-existing condition. Then, last night, the Republicans in the House decide to bring in a bunch of Budweiser beer to celebrate. Millions of people are now worried about their healthcare and these buffoons are having a huge party up there at the Capitol? Is this Christian?? Didn’t Jesus say “Love your neighbor as yourself”? How does this insensitive behavior say that you are “loving your neighbor as yourself”? Cutting medical benefits to the poorest of the poor – how is this “loving your neighbor as yourself”? And yes, the Democrats should not have sung after the vote. I don’t excuse their behavior either.
I am a Christian and see right through what Fox News, Trump, and Congress have done. Why can’t these so-called Christians who are die-hard Trump supporters see through it?? I have my thoughts on this. I think they are the Pharisees, the whited sepulchres, that Jesus talks about all throughout the gospels.
The official definition of a whited sepulchre according to Merriam Webster dictionary is a person inwardly corrupt or wicked but outwardly or professedly virtuous or holy.
Trump has a long history of non-Christian behavior. He has made disgusting remarks about women. He had affairs. He has lied over and over again. He pushed this healthcare bill which will hurt the poorest of the poor. He made fun of a disabled reporter (Yes, he actually did….I saw the video and no one is going to tell me differently, so don’t even try).
But then, he shows up to events with a Bible. Melania says the Lord’s Prayer at a rally. He talks about his “Christian values”. Do these acts automatically make him a Christian? NO! Some Christians praise him for doing this – I think it is a form of sacrilege. To me, I see a whited sepulchre because his actions are opposite of his words.
Jesus warns of whited sepulchers in Matthew 23:27 (King James Bible):
“Woe unto you, scribes and Pharisees, hypocrites! for ye are like unto whited sepulchres, which indeed appear beautiful outward, but are within full of dead men’s bones, and of all uncleanness.”
Remember – NO ONE fools God. You can’t raise your hands to heaven and praise Him and then turn around and cut healthcare to the poor, talk trash about women, discriminate against minorities, etc. and still expect to be in good standing with Jesus. He sees through it all. Our God is a God of justice, and He will see to it that all the scales are balanced. Don’t be deceived by these “whited sepulchres”…those that are really good at talking about God but then live a life that is diametrically opposed to what Jesus said in the Bible.
You know, strength is not just physical. Someone can be physically strong but emotionally and mentally weak. I know people who fall in to this category. However, today I am going to talk about emotional and mental strength…something that is not recognized very often. Going through rough times make people beautiful by strengthening their resolve. You know you can rely on these individuals as nothing will bring them down. I have been through it myself, and I have persevered due to the love and help of God. I want you to know that you can persevere as well.
It’s been a while since I have written a blog, and there is good reason for that. I have been dealing with some medical issues again. After receiving some disturbing news yesterday regarding my health, I thought back on everything that I have been through in my life. I truly believe that everything happens for a reason, so I decided to write this blog to let all those who are suffering know that there is always hope.
My health story begins in 1986 when I suddenly came down with an acute case of appendicitis. I was brought into emergency surgery in the middle of the night, and it turned out that my appendix had ruptured. I stayed in the hospital for six days and was told that I was lucky to be alive.
Around 1990, my whole ordeal with adenomyosis began. The severe pain and extremely heavy bleeding lasted for seventeen years before I was finally diagnosed at hysterectomy. You can read my other blogs for more details on my adenomyosis journey.
In 2009, I woke up and was unable to stand as my right leg gave out from underneath me. It turns out that I had a herniated disc in my lower back and a broken vertebrae. This led to my first spinal fusion. Five months after surgery, I learned that two of the screws broke, and I needed a second surgery.
In 2010, I had my second spinal fusion. Sadly, this fusion also failed, and a third surgery was done in 2012.
In between my second and third back surgeries, just by chance, I learned that I had a brain aneurysm. I had no symptoms. The aneurysm was picked up when I had a head CT scan that was needed prior to a CT myelogram for my back. I was stunned! I had surgery, and the doctor placed a coil and stent to block flow to the aneurysm. Thankfully, the aneurysm is now stable.
While recovering from the coil and stent surgery, I found out that my husband was having an affair. I was an emotional wreck as we had been married for almost twenty years. One month before my third back surgery, we separated and he moved out. We are now divorced.
After my third spinal fusion, my left hip began to hurt. I was unable to sleep on my left side at night. This was the beginning of hip bursitis which plagues me to this day. I get occasional cortisone injections to help ease the discomfort.
Although the third surgery resulted in a fusion (yay!), I still live with chronic daily pain in my lower back. The pain still sometimes radiates down my right leg. Not a day goes by now that I’m not is some degree of pain.
In the last year, I began to have severe upper back pain. An MRI showed four bulging discs in my neck along with a couple of pinched nerves. I haven’t had surgery for this yet. I decided to go to a pain management doctor, and I have had many shots – epidural, facet joint, medial branch nerve blocks, etc. These have all given me minimal relief, so my doctor suggested I try radio-frequency. This procedure deadens the nerves that go from the spinal cord to the brain which block the pain signals. I had this procedure done, but it deadened the feeling in the middle of my back while the pain continued in my shoulders and upper neck. I actually am in more pain now than before the procedure. Sigh…
In the meantime, I have had knee, shoulder, and ankle pain, and at times, my knee and hip lock up and give out. Since so many of my joints were hurting, my family doctor suggested I see a rheumatologist. On my first visit with the rheumatologist, they took eight tubes of blood from my arm.
Several weeks later, I had my follow-up. I was shocked to learn that I had a positive ANA test. This test detects autoantibodies which means that there is an autoimmune process of some sort occurring in my body. I couldn’t believe it. So, the doctor ordered more tests, and I had eight more tubes of blood drawn.
Last week, I had yet another follow-up with the rheumatologist. This time, the blood work showed that I had high levels of cardiolipin and beta-2 glycoprotein. This means that I have a clotting disorder! She told me to start taking an aspirin a day for now, and I have to repeat the blood work in several months to see if the levels are still elevated. If they are, I will be diagnosed with antiphospholipid syndrome.
The most shocking thing about antiphospholipid syndrome/high levels of cardiolipin and beta-2 glycoprotein has to do with pregnancy complications. Apparently high levels are associated with a high incidence of miscarriage. While I was married, there were times when I was quite sure I miscarried. Until now, I thought it was a result of adenomyosis, but now I wonder if these high levels played a role also. By the way, I have no children. I wish I had this information thirty years ago! It doesn’t really apply to me now as I have had a hysterectomy. However, these levels put me at an increased risk of stroke or heart attack, so I definitely need to address it, and the rheumatologist needs to keep an eye on it.
My rheumatologist believes that my aches and pains may be due to fibromyalgia, and I have been put on Lyrica. So, for now, I live with chronic pain…pain in my lower back, pain in my upper back, pain in my shoulders, pain in my hip, and sporadic pain in my knees and ankles. I hope the Lyrica will help.
So…I know what it is like to hurt physically. I know what it is like to hurt emotionally. I know. I get it. I’ve been at that place where you think there is no way things are going to work out. I’ve been at that place where I ask God, “Why me?” But I’ve made it this far with God’s help, so I know I will make it in the future. No matter how bad things get, you will make it. Ask God for His hand, and He will guide you. With His help, you can move mountains. Nothing is impossible with God!
A great quote to start 2016! You are strong, you are courageous, you are a WARRIOR!!
Yes, these do actually exist! They can be purchased at your local CVS pharmacy. You will understand as you read through this blog.
It looks like I am turning into a Patient Advocate with my history of health problems and working in a medical lab. I saw the report today about a man who traveled to the U.S. from Liberia and fell ill after he arrived here. When I saw this story on FOX news, I decided to sit down and write a post even though I am dealing with my own health issue right now. This news story today goes along with the idea I had for this next blog, and I think now is a good time to publish on this subject.
For those of you who don’t know the news story, a man from Liberia boarded a plane last week, flew through Brussels and Washington D.C. and finally arrived in Dallas. He felt fine during the flights. However, several days after arriving in Dallas, he began to feel ill. He went the the ER where he told the nurse that he had just traveled to the U.S. from Liberia. Now, a red flag should have gone up in the nurse’s mind immediately, but it didn’t for some reason. This information was never forwarded to the treating doctor. As a result, he was given some medication and released. He came in contact with quite a few people while he was symptomatic. His conditioned worsened and he returned to the hospital where it was finally determined that he had the ebola virus!
Clearly the nurse dropped the ball on this one by not putting two and two together. Liberia is being ravaged by ebola, and this patient should have been put into isolation immediately. Of course, he should have never been allowed to leave the hospital in the first place.
Now, let me tell you the story of my medical nightmare over the past several weeks. As I said in a previous post, I have been dealing with some back pain. It turns out that I have what appears to be a urinary tract infection. During my first visit to the ER (I went three times…..yes, three!), they talked to me, assumed I pulled my back during a workout and sent me home with pain meds and a muscle relaxant. About a week later, I notice cloudy urine, and I was feeling worse. I went to CVS, bought some AZO test strips, tested at home and found out that I had a urinary tract infection.
Commentary: First of all, this was a misdiagnosis in the ER. I diagnosed myself by going the the store and using an over-the-counter test. So, I spent probably several hundred dollars to go to the ER and get a wrong diagnosis, and I went to the store and spent $10.00 to get the correct diagnosis.
Continuing with the story….I went to my doctor’s office and a urinary tract infection (UTI) was confirmed. I was put on Cipro. I took that antibiotic for a week and didn’t improve. In fact, I was having worsening back pain and extreme weakness. I took another AZO test strip which was strongly positive, so I went back to the ER. This time, I had a very young doctor who talked to me about my symptoms, pushed on my back and lower abdomen a few times, and determined that I needed to change antibiotics. So, she put me on Levaquin. She left, and a few minutes later, the nurse came in. She gave me a Levaquin to take and made the remark “Even if your urine comes back normal, she wants you to take this Levaquin now.”
Commentary: First of all, Cipro and Levaquin are in the same class of antibiotics. Both are fluoroquinilones. If the infection is not responding to Cipro, would it be the best choice to switch me to Levaquin? Probably not. If the bacteria is resistant to Cipro, there is a pretty good chance it’s going to be resistant to Levaquin. That’s not for certain, but a better antibiotic could have been chosen. Second, the nurses remark about if the urine “comes back clean” was absurd. It was strongly positive about an hour prior to this remark, and it had been positive repeatedly for about a week and a half. Does she think it’s just magically going to disappear into the sky somewhere? Or does she think I’m lying? When she came back into the room, she told me that “yes, you do have a bladder infection.” I responded, “I know.”
Back to the story. As I talked more with the nurse, she proceeded to tell me that she had never heard of AZO test strips. I had to explain to her that you could test your own urine at home with these strips. This conversation started to give me a headache. Later, as I was being discharged, she decided to tell me how to deal with back pain. She asked about my mattress, and I told her I had a tempur pedic. She looked at me with a blank stare and told me she “didn’t know what that was”. I explained to her that it was one of the best mattresses on the market today.
Commentary: Now, I can understand the average person not being aware of AZO test strips. But for a nurse in a hospital ER to not be aware that you can test your urine at home is scary. Secondly, if you are going to give out advice on back care, it is a really good idea to know what you are talking about. I left the hospital that day with all the symptoms I had plus a migraine headache.
I woke up the next day feeling the worst I had felt during this whole ordeal. After talking with the doctor on call, I once again returned to the ER determined to find the cause of my problem. This time they took me a bit more seriously, and I finally received care from some exceptional nurses and an excellent doctor. First of all, they took me off Levaquin as the doctor noted that both Cipro and Levaquin were fluoroquinilones. “Thank God,” I thought to myself. “I finally got a good one!” A bunch of blood work was done along with a CT scan. It was determined that I had an infection confined to the bladder (thank goodness) that was resistant to Cipro and Levaquin. I was put on Macrobid, which is in an entirely different class of antibiotics. I am still struggling with this infection, and I will see a urologist in the next few days.
Commentary: I have to give my kuddos to the team that worked on me during that last visit. That is how patients should be treated! But, I couldn’t help but think how much money and time was spent on me during this whole ordeal. Being a microbiologist, a thought came to my mind that made my laugh, although it is actually sad. I know how to grow microorganisms just like they do in the lab. And believe it or not, it can be done at home. All the materials needed can be purchased at your local grocery store. The only problem that I can see is in the actual identification of the microorganism. So, I thought to myself, “Even though insurance will cover quite a bit of this, I have probably spent a couple thousand dollars trying to get a diagnosis here. But I could have done almost the entire thing myself for about $50! After all, I diagnosed myself with the AZO test strip. It would probably cost about another $40 to get the plate, gelatin, sugar, etc. needed to grow the culture. I really would just need a microscope and a few other items, along with a doctor’s signature after I go into the office, tell them what bacteria it is and what antibiotic I need.” I shared this story with a few friends, and we were laughing so hard…..I mean belly laughing!!
OK, so my point is this: We, as patients, have to weed through some of the bad doctors/nurses to finally get to the good ones. Book smarts are great, and thank goodness that we have smart people around to help us. But what really makes an exceptional doctor/nurse is his/her ability to think outside of the box and to really listen to the patient. Don’t think that since someone doesn’t have the “classic” signs of a disease, then they aren’t sick. I have seen more missed diagnoses than correct ones. Here are a couple of examples. Thirty years ago I went into the ER extremely ill with nausea, vomiting, severe abdominal pain in the center of my abdomen. I was diagnosed with the flu and was about to be sent home when the doctor went on his gut instinct and ordered some bloodwork. Turns out I had a ruptured appendix – not just inflammed, but ruptured! If I had been sent home, I wouldn’t be here now. And then there was my dad who went to the ER for back pain. He was given pain meds as they assumed he pulled his back. It turned out that he actually had lymphoma. But the worst was that it took 17 years to finally be diagnosed with adenomyosis…..yes 17 YEARS! According to the Endometriosis Foundation of America, the average time for a diagnosis of endometriosis is 10 YEARS!
Pay attention to your patients. LISTEN to them and write everything down, even if it sounds unimportant to you. If that nurse in Dallas had done this, we wouldn’t be looking at multiple people being possibly exposed to the terrible ebola virus, and panic wouldn’t be setting in across the nation right now. Think outside the box. Do the necessary tests the first time around, and don’t make the patients return over and over again to the ER. By doing this, we actually can reduce the cost of medical care….and I am quite sure you will be hard pressed to find someone who is against that idea!