Becoming A Hyster-Sister

I have decided to join a special and strong group of woman who have had hysterectomies. My endo decided to rear its ugly head after four years of being somewhat pain-free and regular. The first part of this decision involved social norms and motherhood.

I was brought up in a Christian home where it was silently instilled in me that I would grow up and get married then have children. According to my mom, I would be cursed with a daughter like me. LOL But that is not how my story unfolded. Diagnosed with endometriosis at 21, I was urged to have children way too early. All I could say is NO. I was not married and didn’t have the financial means. As time passed, the doctors urges became louder yet my situation remained the same. It warped my mind. Every guy I dated was instantly inspected for daddy qualities. I am pretty positive that my messed up mindset had a nasty effect on my relationships.

Then I got married…I really thought that we would have a white picket fence life. I was still young enough to conceive and at this point still had one good fallopian tube. Plus, he was open to invitro fertilization or even adoption. But then he got sick. He contracted Lyme disease. At the same time, I was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia. He was a medical student and after researching Lyme he became very concerned that he would pass it to a child or me. We stopped having sex. We also discussed what it would be like to realistically raise a child. Two sick parents. That sounds like fun huh.

His Lyme made my endo look like a mere inconvenience. His doctors didn’t know if he would get better but chances were he would get worse. He did. He now resides in a wheel chair and is about to embark on brain surgery due to infection and lesions. My endo remained my monster under the bed. I had excision surgery in 2012 and that had helped until recently. But I still had issues with CFS.

I began to look at the situation from my unborn child’s eyes. Even if we had stayed together, dad would be wheel chair bound, in-and-out of the hospital and mom would struggle to get out of bed, walk upright or do anything without the assistance of pain medication. What fun!

So maybe I wasn’t meant to be a mother. That is a really though pill to swallow. But maybe infertility goes hand-in-hand with endometriosis because it is in the best interest of the child. We know there is a genetic component, making it highly likely to be passed down to female children. And, don’t they deserve a mom who has energy and isn’t in pain constantly? I am not saying that this applies to all women with endo or even any other woman other than myself. Situations and support systems vary from woman to woman.

So, step one? Kick my anxiety and depression’s ass. I started on medication about a week ago. I stopped crying nonstop. Then, I am going to find a counselor who specializes in this sort of thing and can mentally prepare me for losing my lady parts. Step 3 Find a doctor in Arizona who is well known and uses excision. Then do it! 

Becoming A Hyster-Sister

I have decided to join a special and strong group of woman who have had hysterectomies. My endo decided to rear its ugly head after four years of being somewhat pain-free and regular. The first part of this decision involved social norms and motherhood.

I was brought up in a Christian home where it was silently instilled in me that I would grow up and get married then have children. According to my mom, I would be cursed with a daughter like me. LOL But that is not how my story unfolded. Diagnosed with endometriosis at 21, I was urged to have children way too early. All I could say is NO. I was not married and didn’t have the financial means. As time passed, the doctors urges became louder yet my situation remained the same. It warped my mind. Every guy I dated was instantly inspected for daddy qualities. I am pretty positive that my messed up mindset had a nasty effect on my relationships.

Then I got married…I really thought that we would have a white picket fence life. I was still young enough to conceive and at this point still had one good fallopian tube. Plus, he was open to invitro fertilization or even adoption. But then he got sick. He contracted Lyme disease. At the same time, I was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia. He was a medical student and after researching Lyme he became very concerned that he would pass it to a child or me. We stopped having sex. We also discussed what it would be like to realistically raise a child. Two sick parents. That sounds like fun huh.

His Lyme made my endo look like a mere inconvenience. His doctors didn’t know if he would get better but chances were he would get worse. He did. He now resides in a wheel chair and is about to embark on brain surgery due to infection and lesions. My endo remained my monster under the bed. I had excision surgery in 2012 and that had helped until recently. But I still had issues with CFS.

I began to look at the situation from my unborn child’s eyes. Even if we had stayed together, dad would be wheel chair bound, in-and-out of the hospital and mom would struggle to get out of bed, walk upright or do anything without the assistance of pain medication. What fun!

So maybe I wasn’t meant to be a mother. That is a really though pill to swallow. But maybe infertility goes hand-in-hand with endometriosis because it is in the best interest of the child. We know there is a genetic component, making it highly likely to be passed down to female children. And, don’t they deserve a mom who has energy and isn’t in pain constantly? I am not saying that this applies to all women with endo or even any other woman other than myself. Situations and support systems vary from woman to woman.

So, step one? Kick my anxiety and depression’s ass. I started on medication about a week ago. I stopped crying nonstop. Then, I am going to find a counselor who specializes in this sort of thing and can mentally prepare me for losing my lady parts. Step 3 Find a doctor in Arizona who is well known and uses excision. Then do it! 

My Inner Beast - MY Anxiety and How I am Dealing

I’ve had anxiety for almost half of my life. It started when I was 18. I would have sporadic, sudden panic attacks. They sent me to the floor like a baby. Now, it is like a monster that I battle constantly. The more I have learned about It, and myself, The better I manage it.

Today, I had planned on going to a career fair after submitting a resume to a pharmaceutical company. I have wanted to start a career in pharmaceutical sales for quite some time, but getting your foot in the door is hard. I procrastinated getting business cards made because my current financial situation is just becoming stable. The money I made last night would pay for the cards, plus printing 20 copies of my resume, references and recommendations.

I spent about an hour crafting the cards, I even found a high-resolution head shot so they might remember me later. But the printer would not let me pick them up in the store, and the store could not retrieve my order. So, I picked up a shift at the restaurant.

For whatever reason my anxiety fades for the most part when I am working. I am too busy to worry. Waiting tables or bartending is like being in a play for the millionth time. Occasionally there is some adlibbing, but I rarely hear something, or come into a situation, that is new in any way. The uncertainty is managed. I know what to do, what to say and when.

Sometimes I let my customers get to me. But for the most part I understand that I can’t go back and change anything or force them to tip me more. I simply move on to the next table. I keep my anxiety medication in my pocket, but rarely need to take it at work. Just knowing it is there for me is usually enough.

I am constantly going over potential conversations in my head. It’s really very annoying. But, when a situation arises when I need to think or speak fast, I freeze. If I am speaking with a male or a woman with a strong alpha male personality, it’s even worse.

I know a part of this is confidence. I am my own worst critic, best friend and enemy. I tell myself the meanest things. I wonder if that is so if someone else says them it won’t hurt as bad. I break myself down all the time, every day, every hour for no reason. Overcoming that is hard. I have gotten a little better and tell myself to be nice and am self-aware. I shut those voices down as quickly as possible. I know this will take time.

Sometimes my anxiety gets so bad that I can’t leave the house, sometimes my bed. I’m afraid of people seeing me. Maybe it’s because I’m so anxious that I have let myself become disheveled. Maybe it’s because I don’t want to talk to anyone. I’m worried they might say hi. I have gone without eating and in certain living situations, urinating. It’s absolutely crazy.

I think the agoraphobia kicks in when I am so overwhelmed with anxiety that I just can’t deal with it. So, I try not to let it get that bad. Writing has really helped. Giving these thoughts a new home, so they are no longer bouncing around in my head is cathartic. I can only write a little at a time, but the thoughts I have released are barely coming back to mind. It’s like therapy but we can skip the getting to know you part, and the payment at the end. LOL

I am also trying to get back into Yoga and Pilates. I did a 20 minute class that focused on weight baring for people with carpal tunnel syndrome. I need to practice that one until placing my hands in a certain alignment becomes second nature. Then I did a 10 minute Pilates video. My wrists hurt a little. I plan on doing this every other day and upping the time and energy spent. So that’s my plan. Writing, exercise, vitamins and self-awareness. We shall see if I can cure/treat myself.  

July 2011

Hi All,

Good News! I met my husband and through my deep love I got a great benefit - Insurance!

He is in the military and although the insurance is not steller...it works.

My endo is under control. I for some reason cannot handle birth control, but its ok. I noticed some comments that I have not seen because I had not been on in a while. My apologies. Thank you everyone for your support.

On a less than great note, they think I have Chronic Fatigue Syndrome. Not fun, but my new hubby is very savvy and has been helping me find great books and go to a specialist next month. My attitude remains positive and I thank everyone for their support.

Endo Under Control – Insurance Not so Much

I know it has been about a year since I have written. My apologies. It turns out that the treatment or Lupron may be working to keep my condition under control. Yay! However, my attention is redirected once again to health insurance. After a job change recently, I am faced with the monetary challenge of being insured when you work for a small company. We only have three employees - my boss, his wife and me. His wife is a survivor in every sense of the word. She has battled and one a fight against pancreatic cancer and is now facing Lupus. These unfortunate events have made the organization’s insurance policy a very expensive one. Add endometriosis to the mix and the cost rises.

I am frustrated because I thought that after facing the issue of having a chronic illness and no insurance was not going to be a reoccurring theme in my life. Now if this was 2014, pre-existing conditions would not be an issue and the price would be reduced dramatically. Bad news – that is four years away. And with the 2012 elections, that may change too. So do I leave a job I love, that has room for growth, and find a job that is OK, but has affordable health care? And, will this nightmare ever end?

More Healthcare Debate - A response to recent propaganda

Yesterday, my brother sent me a text message with a picture of OUR President with the text “Guess he can’t.” The picture also seemed to have a negative racial element to it, as well. I asked him not to send me that sort of propaganda and he began a debate. He told me that reform would kill Americans. I laughed because that is like saying the black cat is white.

I told him he needed to turn fox news off and get his facts straight. That according to a Harvard study, 44,000 people die each year because they have no health coverage. He told me that it would only benefit people who make under $30,000 a year and would cost everybody. I asked him two questions: Why are people who make less than $30,000 annually health’s less important than his? And, if he is angry about paying taxes for benefits in which he does not receive, like social security and Medicare, so important now.

I am 27 and will most likely won't see social security, He is 29. I know that people like my grandparents do benefit and I have no issue being a part of a system that helps them live. I would also not mind helping those without insurance get the coverage they need and deserve.

He then said, “Don’t be a Communist!” I am not a communist, but as car insurance is mandated to protect drivers from each other. I think there needs to be a safety net for all of the possible health care issues that could kill someone or make them bankrupt.

I wanted to remind him of when he was a teenager and needed brain surgery after numerous strokes. Had our parents not had quality medical insurance, he would not be here to debate this issue. I knew it would only fuel more pointless debate, so I said nothing.

I wanted to remind him that he has a sister with a chronic disease who has been denied health coverage for being “sick.” And that those health insurance companies willing to insure me, while I was a student, wanted more money than budgeted for rent. That I went without because it was not a financial option. I also cried myself to sleep in pain and agonized myself knowing that my body was eating itself alive and having children was becoming less and less of an option for my future, his possible nieces and nephews.

I also, but didn’t, wanted to point out that studies show those in favor for reform are either the uninsured who would benefit and those that are “intellectuals” and could see the big picture and how it would affect our society. Once again, I kept silent because he would fall into the middle and feel like I was using my education against him.

I love my brother and other members of my family and friends that do not agree with me. I am happy to hear their opinion if they will remain calm and hear mine. But too many people are buying into super conservative propaganda pushers that only seem to yell their opinions that are not backed up with legitimate facts from legitimate sources. Just because they yell the loudest does not make that nonsense true.

As I mentioned, expressing my views to my brother would fall on deaf ears, but I had to vent my opinions. Thanks for reading.

Feel free to discuss the issue, but be prepared to back up your opinions with facts from reputable sources.

October Update

Sorry I have been despondent recently. Sometimes I find my condition too much to bear and have to stop thinking it about it. But then the pain comes back and I am forced to confront it.

I have been off lupron for about six weeks now and just finished my first cycle since March. It was painful and although the normal indications are gone, the pain has remained. Such as life. I do not think the lupron helped, although I think it does help some people, just not me.

What angers me more than my pain, is the pain of others who are not as fortunate as me to receive superb care due to lack of insurance or having their endo deemed "pre-existing." I think if every American went without health insurance with a medical condition, the healthcare debate would not be a colossal screaming match, If we could just care about our neighbors the way we do after a natural disaster or terrorist attack, paying a little extra so your neighbors that may not be as well off as you, would not be a problem.

Keith Oberman has urged Americans to support health care clinics in the states in which there is much opposition from statesmen. Therefore, proving that there is a need for healthcare that helps the poor and underserved. So many of our politicians turn a blind eye to those that they see as of little importance. BUT WE ARE ALL IMPORTANT. Who am I to say that I deserve healthcare and you don’t? It is our generations' fight for civil rights. And people are dying because they do not receive adequate care. They die every day, every hour. But that could be stopped with proper healthcare regulations. Please do not conform to the republican boogeyman and do your research before deciding that reform would end all healthcare.

If you wish to no more about Keith Oberman's campaign to bring healthcare to those underserved in states that are fighting regulation, click here.

Letter to Oprah

Oprah,

I enjoyed your show last month on innovative ways to live longer. It gave me hope, hope that someday the disease that afflicts me will be better understood.

Seven years ago, I had intense pain in my pelvic cavity. After going to the emergency room, and eventually an OBGYN, I was told that I had a tumor or cyst on my ovary. I promptly scheduled surgery for the following week. The first thing I remember coming out was my mom telling me that it wasn’t a tumor, it was endometriosis. My heart dropped because I knew the type of tumor suspected was benign and had little chance of returning, but endometriosis has no cure and could mean a lifetime of pain, both emotionally and physically.

Endometriosis affects me almost every day. I recently underwent my third laparoscopy and have just started my second round of an experimental hormone therapy, Lupron. And, I’m not alone. According to the Endometriosis Association, Endometriosis “affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide.”

I could tell you about the immense amount of pain that I have been in most of my life, or the psychological damage of thinking that you are infertile and defective as a woman. But I won’t, because I’m one of the lucky ones. I recently gained health care to assist in the massive amount of medical bills. I don’t have any of the autoimmune diseases that tend to accompany endo like chronic fatigue syndrome, fibromyalgia and lupus. And probably the biggest reason I feel thankful, I still have my reproductive organs and a positive outlook for their future.

There are so many out there that are not as fortunate as myself. They suffer in ways that most couldn’t imagine or understand. One of the hardest obstacles we have to overcome is explaining to our family, friends and most importantly, ourselves the parameters of the disease. There are many theories including: Metaplasia—a form of embryonic tissue that transforms into reproductive organs, retrograde menstruation, genetic predisposition, immune system dysfunction, and environmental offenders. I believe that the truth lies in a combination of these theories.

As with their patients, most doctors don’t seem to completely get it either. The first group of doctors I went to only seemed to be concerned with me having children. I understand they meant well, but I was still in college, single and not ready to bring a child into this world, who I frankly couldn’t care for in the way they deserve. I now have an innovative set of doctors that have made my life more livable. My surgeon, Dr. Rakesh Mangal, was able to remove all of my endo and my appendix, which was suffocating in scar tissue. The doctor who I was referred to, Dr. John Mathias, is amazing! He has conducted his own research and discovered a course of treatment that both prevents the disease from returning and reduces pain through diet versus pain killers.

He believes that the colon is the “brain” of the endo and contributes to the growth as well as pain levels. Through his primary research, he found that women with endo have mini-seizures in their colon that aggravates and furthers the condition. He hooked my stomach up to a machine that measures seismic activity and let me listen to my tummy as it crunched each time it seized. He also found that woman with endo are insulin resistant and that sugar aggravates the condition and raises pain levels. I was completely amazed by his theories and his research.
He started out by providing a diet that I would consider a mix between a Mediterranean diet and the South Beach Diet, which basically includes fruits, vegetables, poultry, seafood and olive oil. He also has his patients take minerals and Omega-3, In addition, to medication to control the seizures and daily Lupron shots.

Lupron is an experimental hormone that tricks the woman’s body into artificial menopause with the intent to stop the production of estrogen and ovulation. Typically, it is administered monthly or every three months for a 3-6 month course of treatment. Dr. Mathias prefers daily because it cuts down on the intense side effects like mood swings, headaches, night sweats and hot flashes. I underwent this treatment before but in the traditional manner, one shot every three months for six months. My side effects were so bad, moodiness being at the forefront, that my mom said she would disown me if I tried it again.

While speaking to health insurance agent to get the Lupron covered, I met a girl in South Dakota that has endo. She was helping me through the red tape and realized we have the same condition. She commented that her doctor said it was rare for both her and her sister to be afflicted. I almost screamed because I know that women are a great deal more likely to have endo if their mother or sister do as well.

Awareness needs to be increased by leaps and bounds, not only within the general public, but between the woman who suffer and doctors who treat them. With the 5.5 million endo-afflicted women in the U.S. and Canada, “Endometriosis (is) more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility,” according to the Ohio State University Medical Center.

With those statistics, one in ten of your female viewers have endometriosis. And many, many more care about someone suffering with this disease. I belong to an online support group and every new friend I have talked to has asked me to write you, so that you may tell our story and shed some light on a misunderstood condition that effects so many.