Thursday, July 28, 2011

The Sage and The Stork

My “story” is not very different from those of others. I’ve experienced happiness, heartache, and pain throughout my life. Fortunately, I’ve had more happy times and fond memories throughout my 38 years.

I am an only child and have been fortunate to have a large, loving family around me my entire life. My childhood prior to 11 was pretty typical, aside from the fact that my parents always argued in front of me. My father was more of a “buddy” than a father figure, leaving all of the discipline to my mother. My parents divorced when I was 11, the summer before I started sixth grade. My life changed forever at that point.

After the divorce I would see my father occasionally, and I remember him living at a different place at each visit – always living with a friend or girlfriend. When I was in eighth grade, I began asking my mother more and more questions about the divorce and my father. I believe at this time my eyes were merely beginning to open to the situation before me. I came to learn that my father was verbally abusive to my mother from early-on in their marriage constantly belittling and yelling at her. Until this point, my mother never talked negatively about my father to me. The more I learned of his affairs, drug usage, and abuse, the more troubled I became. Shortly after I learned of the “truth” of his behaviors, he called me on my 13th birthday. I told him that I never wanted to speak to him again. These were literally my last words to him.

You can imagine that middle school was quite difficult for me. Not only was I an emotional wreck, but I was an “early developer”. Unfortunately as I developed my figure early, my body also reacted to the hormone surges and I was overweight. I was teased quite a bit by others, primarily girls, which only compounded my emotional issues. I began getting involved in sports in the seventh grade, which helped me to slowly lose weight; however, I was not able to ever be as thin as I wanted to be. It took me years to realize that I will never be a size 6, merely due to the fact that I have a large frame.

I have always been a very outgoing, friendly personality, and for this reason, I have always had a lot of friends. Most of my friends were always older than me in high school. I attribute this to the fact that I was more mature than most people my age because of my experiences. I did not date much in high school because of two reasons: 1) I was consumed by sports, which took up the majority of my free time 2) I saw how all of my male friends talked about the girls they dated and slept with – which was rarely positive. So, as I got further along in high school, my closest friends kept graduating, which ultimately left me alone my senior year.

My first serious boyfriend was my senior year of high school, when I was 17. The boy was the cousin of one of my closest childhood friends. The relationship was a textbook case of codependency for both of us, which was interesting given that fact that he was in college and lived an hour away from me. Despite living in a separate town, we spent every weekend together and often saw each other during the week as well. A month into the relationship he told me that he suffered from bi-polar disorder. At the time I had a vague understanding of mental illness, but soon learned that I was going to get a crash-course in dealing with the disease directly. Our relationship was very intense for several months, but ended at the end of my senior year right before my senior prom. I learned recently that he came out of the closet in the last few years, after he divorced he wife.

In college, I dated often and truly came out of my “shell”. I chose to go to a top-rated private liberal arts university that was known for the diverse nature of its student body. My grades were less than stellar my first year as, like others, I partied too much. I joined a sorority (which I am still actively involved in at the alumni level) my sophomore year and held numerous offices in the three years of membership.

My exposure to the world and others heightened in college, as I learned of other cultures, religions, etc. This is when I became very liberal in my stance on social issues such as gay rights, pro choice and other controversial social issues. Never once, however, did I lose my belief in Christianity. I just believe that I became more tolerant, sympathetic, understanding and a less judgmental individual. These are values that I will hold for the rest of my life.

My last semester of college was quite difficult for me. My grandmother, a dear friend, passed away suddenly three months prior to graduation. Her death shattered me to the core. In middle school and high school, I would spend significant time with her and my grandfather during the summers while my mother attended graduate school or worked. My grandmother became one of the few people I would turn to about my troubles regarding my father. She was an amazing woman, and even 16 years later, I still think of and miss her almost daily.

The months succeeding her death were very difficult for me. I fell further and further into a depressive state. Shortly after graduation, I began seeing a psychiatrist in search of treatment for the depression. After just a few weeks of treatment, I was diagnosed with severe clinical depression and began a combination of treatment with medication and twice a week counseling sessions. After a year of treatment, we finally were able to begin addressing my pain and resentment toward my father and how it affected every relationship with a man that I had ever attempted to have. Psychiatric treatment was the most difficult thing I have ever experienced in my life because it was a sort of “death and rebirth” process. I have been under psychiatric care or monitoring for over 15 years now.

Needless to say, my time in therapy was very confusing at many points. I actually experienced some of my most self-destructive behavior during those first five years. I was quite promiscuous, used drugs and often kept friends at an arm’s length distance. Finally, a breakthrough occurred when I was 26 and everything began turning around for me. Within a year of my turnaround, I met my husband. I know now that we were meant to meet at the exact moment we did, which is why my turnaround happened when it did.

We have been married for over ten years now, and have experienced many trials during that period. The largest test of our marriage and of my sanity in the ten years has been infertility on my part. After numerous years of extensive infertility treatment and surgeries, we learned in 2007 that I would never be able to conceive a child. During the years of treatment, I battled with my depression off and on, despite still being under treatment for the disease.

In late 2007, we received a telephone call about an unborn little girl needing an adoptive family. We dove into the adoption process hearts first, and let our heads never fall from the sky. After three months of doctor visits with the birthmother, planning a nursery and getting ready for the delivery, the birthmother vanished. I learned of the birthmother’s change of mind when her doctor told me that she was no longer interested in putting the child up for adoption. We never received word from the birthmother, nor did the attorney that we were working with. We – especially me – were devastated. I slipped into a deep depressive state, starting drinking a lot, having affairs and doing everything I could to escape the pain. The months afterward I began looking for jobs out of state and also told my husband I wanted to leave him many times. I had officially hit rock-bottom by the end of the year.

I began therapy on a more intensive level again in 2008 after the adoption fell through. It was helping me some, but I was never quite able to move forward. My psychiatrist changed my medication again, and we started to finally see improvement. In early 2009, I was still trying to figure out where my life and marriage were going. The pain of not having a child had consumed me to a point that I didn’t know what to do with my life, except for dive into my career. All I could do was ask for a sign from God or whom/whatever on what I was supposed to with my life. Within weeks of essentially throwing my arms in the air in “giving up”, we received a call to adopt an unborn boy.

My husband and I discussed for hours the possibility of adoption and the state of our marriage, and if adoption was even a decision we needed to make at that point. In the end, we decided to pursue the adoption. The boy was born five weeks after we received the call, and the adoption was finalized with no difficulties in the summer of 2009. I can admit that this child has essentially saved my life, and there is nothing I wouldn’t do for him. We love him as if he were biologically our own, and our marriage has never been better.

I thank God every day of my life for my husband, my son, and most importantly, all of my experiences. My experiences, whether they were happy or sad, have made me the amazing individual that I am today – and I am THANKFUL for them all.

be thankful for the experience

Thursday, July 21, 2011

Wonderful Life II

Well I’m not exactly sure if those were his exact words, but it does sound good. It’s funny how things happen when you least expect.

Fate brought us together. I was forced by a friend to venture to a new happy hour venue. John decided to frequent the same place after vowing to never go there again. It just so happen to be the same day. How cute is that? Eleven years later, this Chicagoan native, John, and I still share 'moving on'.

I always wanted to return to school someday and match my siblings with a college degree. Actually, it was more like making my mama happy. She was born and raised in Mexico and worked her entire life to provide her children with the opportunity she never had growing up. You see, I was the rebel of the family and thought a paycheck after high school looked more inviting to me than another diploma, so I took a different avenue and kept going.

Graduation, this special achievement, was a difficult one for me because it had been twenty plus years since I had sat in a classroom, but I did it. It was very rewarding seeing my mama’s joyful face at my college graduation as well as knowing that I had the ability to accomplish whatever I set myself to accomplish.

During my working career, it always bothered me to report to someone and watching someone else enjoy the profits of my hard work. I vowed that one day I would become my own boss. I had to return to work, become self employed with a prosperous business that I could feel good about managing.

I knew the consequences of returning to the workforce might not be beneficial to me while entertaining side effects of my medication. “Damn if you do, damn if you don’t” type thing.

I figured I could motivate and assist my partner to start his own business and have something for us to fall back on, a side job working from home. It was a good thing I did. The economy being in it's hardship status today, the company where he worked closed their doors after 13 years. He is currently forced to utilize his broker license to the fullest now just to make ends meet. Now, I can at least help when I can and as much as I can while doing things

Being a gay man, it was always a known fact that marriage or children would probably never be a possibility for me; I still had the parenting urge and hope that one day I would have my own family. Today, we have two wonderful little boys, Oliver and Bailey, our pride and joys. Oliver is the smartest Wire Fox Terrier you will ever know and a wonderful big brother to Bailey, our soft, cuddling and loving Bedlington Terrier. They are six and seven years old and bring us so much joy every day. They have the run of the house and love their big yard and especially the swimming pool. Yes, one of the major priorities of finding a home was having a pool for the boys. Oliver is my diver. Bailey is my “Michael Phelps,” the fastest swimming dog I have ever seen.

They may not be human, but they are our loving children and remind us every day of that fact. Finally, like everyone else, I wanted to someday own my dream home. Three years ago, we accomplished this dream. A home just perfect for our comfort and a large yard for the boys, plus the fact that we are both in our 50’s and do not need any stairs at this point in our life. It is our very own paradise to grow old together with our boys and a place large enough to accommodate our family and friends visiting from the Midwest. And believe me,
our revolving door is always in use as everyone loves to visit us as well as San Diego. It has been a wonderful ride getting to this place in my life and I will continue to achieve as much as I can. I will admit that with all accomplishments in life there can be some challenges along the way, but with motivation and a strong mind, if there is a WILL one will find the WAY.

As I said before, I continued to live a healthy life and will always keep a positive attitude about any and every thing around me. The key is staying focused and not utilizing any energy on the past, but work on the current issues of my life. I cannot change the past, but only take the positive of it to work for in my favor today. A good example is dealing with numerous medications on a daily basis. My thought is to take them and move on. The downside is dealing with side effects from them that challenge me all the time. I will never let them succeed with forcing me to surrender my most powerful medication, my mind.

Shortly after meeting my partner John, I was diagnosed with AVN (a vascular narcosis) and spent the next three years going through hip replacement surgeries on both sides. Actually, it was more like three hip replacements. At age 40 my doctors thought I was too young to have one until this miraculous doctor offered me a partial hip replacement. I found his enthusiasm in my case interesting as it benefited both of us in one way or another. The hope was that was supposed to last me eight years, but I wore it out in three. My energy level was higher than he expected and three years to the day, he was performing a total hip replacement on the same hip.

AVN is a joint decease caused by a medication I took in my earlier years battling full blown A.I.D.S. Again, this is where I realized it’s “Damn if you do and damn if you don’t”. Without this only steroid medication doctors recommended for me at the time which is the culprit of my disease joints, I probably would not be writing this story today. Full blown A.I.D.S. is where your entire Acquired Infectious Deficiency Levels are none. By the time the doctors were performing my third surgery, I became a champ on recovery and showing physical therapy my own routine.

I was soon becoming very well known at the campus of UCSD (University of California San Diego) Medical Center, first at the Owen Clinic with constant visit to my incredible primary physician, who monitors my medication and overall health issues then at Thornton Hospital Orthopedic Center where I am sure was one of their most profitable patients. No wonder all the “red carpet” treatment. It did not end there, soon thereafter, it was time to make myself known at Shiley Eye Center just to add to the list.

My Retinitis was starting to affect my vision drastically to the point where my only hope of vision survival consisted of numerous surgeries recommended and performed. While back in Chicago, I was made aware of CMV Retinitis setting into my eyes and that there was a great possibility of vision loss. The doctors at Illinois Masonic Medical Center performed necessary surgeries then to help save my eye sight for as long as they possibly could. Today, I have slowly lost vision in my right eye due the CMV Retinitis, but I still have one 20/20 eye vision in with my left eye.

It might mean for me to move my head a little to the right most of the time. Hopefully, one day I can be the first candidate for a Retinal transplant when available. Or maybe even the second, but I have hopes of being able to see out of that eye again. If not here on Earth, then I’m sure up in heaven when I reunite with all my peeps. Either way, it is what it is and I can still smile and hold my head up high.

Continuing my courtship with John, amazingly he has not run away, nor do I think he would. With our similar backgrounds, he too has dealings with side effects that are different in appearance, but yet just as severe. He amazes me with his ability to take on this adventure with me while suffering his own issues, but I truly believe we inspire each other to just keep moving on. That just makes me love him so much more. Especially when I’m forced to entertain yet another challenge God has put in my path.

As if UCSD did not know me enough, I was forced to make acquaintance with doctors at the Cancer Center. Well hold the tears, it was not as bad as you might think it would be, but the signs were there and the doctor has so far managed to perform the necessary surgeries removing any evidence of the big C. Currently, I am on a yearly “surveillance” treatment.

I can very well be a good candidate for the worse, but so far so good. All of these side effects continue to make their appearances whenever they chose and without my control. If it is not one thing it is another or like they say in Spanish “si no son tomates son chiles.” It is just something I have to deal with every day of my life and I still to this day will not let it get the best of me especially taking over my mind. My mind is the strongest medication I have and I will not surrender it to medication, illness or anyone. I am powered by the fuel that keeps me going. And John is the major motivating force of my life.

John and I recently added a new goal to my list that I never would have dreamed coming true.On December 27, 2008, my 50th birthday, our family and friends witnessed our commitment to one another at our fabulous wedding ceremony. Thanks to the wonderful State of California we were able to make our dream a reality. Now I can scream out those infamous words of Sophia from one of my favorite movies, the Color Purple, and mean it, “Look y'all I’ze married.”

As I continue to accept to live with challenge after challenges in my life, I am ready for whatever comes my way. I will not allow anything or anyone prevent me from happiness.

I have always lived by my own philosophy, “You are the only someone in this world that can make you happy. Others in our life only enhance it." This can easily be done with a strong mind and a loving soul. We all were blessed with the same tools; we just need to know how to make them work in our favor. God gave us the tool; we need to use it wisely.

Recently this year, I had both my shoulders replaced due to the AVN making yet another appearance. Not like the hip replacement recovery, this one a little bit more challenging. I’ll get through this one as well. Together with my husband we make a good life for ourselves in spite of challenges that cross our path. We continue to keep utilizing our most valuable tool and most powerful medication we have. While keeping control of our own minds, there just AIN’T NO STOPPING US NOW.

-Marc Medina

you control your mind

Thursday, July 14, 2011

Yundi Li plays Chopin Nocturne Op. 9 No. 2

The Wonderful Life I

I am not really sure anymore about what time of day it is, but as I lay in bed weak, nauseated, and attached to an IV that has become like a third arm in the past few months, I can barely keep my eyes open. So far the only medication available for me at this time is working a double whammy on me. Supposedly it helps to keep me alive, but killing me softly at the same time.

I can hear very well. I hear all the crying in the other room. God forbid they do it in front of me for fear that I fall apart as well. I can also hear everything else going on around me near and far. I can feel this illness taking everything from me little by little. First my hunger then my weight and now experiencing other organs not working like they should or use to anyway, but I still have my mind and that is the one organ I know for sure is still working and I am trying so very hard not to surrender it.

As I have no choice but to allow A.I.D.S. to take over my body, all I can do is think night and day about the childhood friends it took from me in recent years and especially the one right from my arms. Rolando, Peter, and Michael, my buds, I am so proud to give recognition to the world. They are in heaven just waiting for me to join them.

For some Godly reason, and I would hate to think that I am the true meaning of, 'only the good die young', I was forsaken and fortunate to meet with the much awaited prolonged medication to provide a self defense toward A.I.D.S. to fight for a chance to stay alive. To this day, I miss them with all my heart even more steadily than the desserts miss the rain. I think of them daily and feel them, my guardian angels, watching over me.

Today, I am ten years plus H.I.V. undetectable and living a healthy life with some major side effects of course, but hey, at least I still have my mind and I am alive. It has always been a wonder to me as to why I survived and what exactly the meaning of this second chance of life is. As I live and breathe today, I continue to work my mind to the fullest and do as much as I can in life for myself and especially for others.

Somewhere deep in my heart I feel the call to help others. On a much larger scale as it has become a passion for me to achieve. Many wonder where my enlightening energy comes from and I simply reply, it is fueled by all the love and support of my friends and family, especially my parents. It is constant.

My second chance at life, as I like to refer it to, started in the late 90’s. I was forced to leave the corporate world due to the constant re occurrences with my illness and all the side effects. It was also recommended for me to leave the cold climates of the Midwest. A.I.D.S. had taken its toll with my lungs and another pneumonia hospital visit could very likely be the big one. I took everyone’s advice very seriously and got the heck out of dodge and headed to the West Coast.

I was very fortunate to have a loving brother who opened up his home to me for the winter months in beautiful San Diego. He had no hesitation, and as a matter of fact insisted on me being there to help me with my recovery in a much better climate.

I come from a large family with five siblings. They have all shown much support before, during, and to this day. Without ever questioning my life style, they have always been there for me. It is the greatest feeling in the world. It is no wonder why I have always been able to just be me. We all live in different states. Through the wonderful upbringing of our parents, we all stay in constant touch with one another as if we lived next door.

After several years of sharing my life with the Midwest and the West Coast, at the age of 40, I made a decision to make San Diego my permanent home. It was a perfect opportunity for me to take advantage of regrouping and doing the things I had not accomplished while working and playing hard in Chicago. Now don’t get me wrong, I loved Chicago and it loved me, but San Diego opened it arms to me and showed me that the rest of my life starts here.

Still wondering why me, why was I fortunate to be granted a second chance of life. I figured out that this would also be a good place for me to begin setting some positive goals for myself to accomplish before the age of 50. That is how optimistic I was about being around for a long time. I was not going to let anything get in my way of making a much better life for myself.

With my new cocktail medication, that took a while to work on my recovery progression, I slowly started to inherit a strong sense of positive thinking that made me realize that I could never go back to change anything that has happened to me. I only strive on looking at the positive side of everything around me and use my mind to the fullest.

Eventually, the perfect cocktail designed amazed the doctors, but had to be changed constantly just to keep up with my speedy recovery.

First on the agenda of my goals was to finally allow a relationship in my life if the right man was really out there just waiting for me. Working two jobs and partying like a rock star never allowed me to really focus on a relationship, nor did I allow it to happen either. I was living in the fast lane and loved every minute of it.

Some ask me if I ever regret any part of my past and my answer is simply yes. I do not regret any of my past, but do wish that during the past ten years of my recovery, I could have been an inspiration to others who fought A.I.D.S. and lost. Today, I hope to make that a reality and show them as well as the world that life goes on and one living with H.I.V. can have a normal life with a little motivation and support. I have a persistent personality and will give it all I have to acquire whatever I set my self to do.

Getting back to my agenda, after exactly one year of living in San Diego and almost to the day, there I was minding my own business as I always do.

When I heard a voice from behind that said , “Excuse me, but do you come here often.” I turned around and said to myself, are you kidding me, and there, to my surprise, stood the love of my life.

Well, I’m not sure if those were his exact words...

live and breathe today

Wednesday, July 6, 2011

The Glutinous Gremlin

I knew something was wrong with my physiology, as I slowly hiked up the remote South Bass Trail in the Grand Canyon in late May 2008. This was my thirty - fifth hiking trip in the Canyon since 1979 and I was having significant difficulty keeping up with my wife, Cathy (a good hiker). As we hiked up one steep switchback after another to the canyon rim to the finish of our seven day backpacking trek, I found my legs lacking any energy and I simply had no endurance. In retrospect, the day before we left Austin to begin our trip there was a foreboding sign: I had to leave work early and go home to my bed because of severe abdominal pain.

Fast forward to Dec. 2008 and I’m rejected as a blood donor for the first time because my hematocrit is too low. A visit to my PCP confirms I have iron-deficient anemia, and a referral in Feb. 2009 to my gastroenterologist leads to a colonoscopy and EGD with duodenal biopsies to determine the etiology of my anemia. After the anesthesia wore off, Cathy tells me that the gastroenterologist found mucosal damage to my small intestine consistent with an autoimmune disease called Celiac Disease (CD).

Subsequently, the pathology report reveals my duodenum had scalloping and a severe mucosal lesion with villous blunting (consistent with malabsorption), crypt hyperplasia, increased intra-epithelial lymphocytes, epithelial injury, and increased lamina propria inflammation. Post-op serology tests are positive for CD-related anti-tissue transglutaminase and anti-endomysium antibodies, which correlated with the mucosal damage to my small intestine.

I’m now advised to maintain a strict gluten-free diet (GFD) for the rest of my life. And I also receive a surprise phone call from my gastroenterologist sincerely apologizing for his presumed diagnosis of irritable bowel syndrome (IBS), as the cause of my chronic abdominal discomfort for the past decade. Soon thereafter, I’m also diagnosed with osteopenia secondary to my CD and, per my gastroenterologist, if I hadn’t been so physically active it more than likely would have progressed to osteoporosis.

In July 2009, on a hunch, I see an endocrinologist because I still wasn’t feeling as well as I had expected despite having eaten “gluten-free” for several months. The endocrinologist checks my thyroid and diagnoses a second autoimmune disease: Hashimoto’s thyroiditis. A rheumatology consult follows because of the onset of chronic symmetrical joint pain and lab results reveal positive ANA titers and low C3 complement, so I’m now being followed for periodic evaluations of my CBC, chemistry profile, and urinalysis and an annual Lupus auto-antibody panel.

Because of the hereditary nature of CD particularly among first-degree relatives my sister and brother and their children are also screened for CD—and my sister’s youngest daughter, age 16 (asymptomatic) and my brother’s youngest daughter, age 15 (symptomatic) are also confirmed by small intestinal biopsy as “celiacs.”

How could a harmless piece of bread, the staff of life, be “toxic” or pathogenic to a celiac? Surprisingly, the environmental trigger of CD is the gluten in the bread, which turns on the autoimmune response because it’sperceived as a toxin in susceptible individuals. Gluten, which gives bread its chewy texture, is a composite of storage proteins found in wheat, barley, rye and related grains within the tribe of the grass family Triticeae. Even a trace amount of gluten can trigger a response in some celiac patients and have an injurious effect absent any symptoms.

According to the U.S. Department of Agriculture, gluten is a ubiquitous staple in the American diet as white bread, white flour, and white rolls are among the top nine foods eaten by Americans. In fact, many processed foods contain gluten and even “wheat-free” products are not necessarily gluten-free (GF) because they may contain other prohibited grains such as barley or rye. Gluten is also found in cold cuts, sandwich spreads, canned meats, salad dressings, soups, condiments, and in flavorings, seasonings, preservatives, emulsifiers, thickeners, and stabilizers. Hidden sources of gluten are common in non-food products too such as prescription and OTC drugs (as a filler or an inactive ingredient), cosmetics, toothpaste, and even in envelopes (that you lick to seal).

Permitted or non-toxic grains for celiacs include wild rice, corn, buckwheat, millet, amaranth, quinoa, teff, and oats although oats remain controversial because some celiacs react to oats and/or because of cross-contamination with non-permitted grains during the processing and harvesting of oats.

Celiac disease is now considered a common autoimmune disease and it goes by other names such as coeliac disease; celiac sprue; non-tropical sprue; gluten intolerance, and gluten-sensitive enteropathy. It’s found in people of nearly all ages throughout the world and it can develop at any time in an at-risk individual. There is no cure for CD and children tend to present with the more classic signs of CD, including failure to thrive, chronic diarrhea/constipation, recurring abdominal bloating and pain, fatigue and irritability. The most common symptom in adults is iron-deficient anemia that does not respond to iron supplementation. But more often than not, particularly in adults, the symptoms of CD may not present as a one might expect: they can vary from no gastrointestinal symptoms (silent CD) to severe malnutrition or they can resemble an extra-intestinal (atypical) disorder.

I was born in Germany, but grew up in N.J. where I developed a love for good Italian food, subs, and later an assortment of baked goods and energy bars. I never paid much attention to how much gluten I ate—it was a lot—or to my immune system and how fundamental it was to just about every facet of my health, until I was diagnosed with Celiac Disease (and later Hashimoto’s thyroiditis). And despite not receiving my CD diagnosis until the fifth decade of my life, I now feel fortunate to have finally learned what was causing my chronic abdominal distress.

i knew something was wrong