Imagine You Are on a Beach

I was on death’s door this afternoon. With a lump on my tongue and swelling in my glands and a raging headache, I made an appointment with a doctor. 

I couldn’t get in to see my doctor so they sent me to another doctor in my network. 

The nurse brought me into a room and started to take me blood pressure and pulse. “I have white coat syndrome,” I whispered.

She stepped back. “Okay, don’t look at me, I won’t look at you. Imagine you are on a beach.” 

I tried to do what she asked because I really liked her and she reminded me of Niecy Nash’s character in Getting On.

“What, do you think you’re running a race?” she asked. 

“I told you I get nervous. What was my blood pressure?” 

“150 over 82.” (High, obviously.)

“If you take it in a few minutes, it will go down.”

“Have you felt depressed, down or hopeless in the last six months?”

“Yes.” As in, hasn’t everyone?

She handed me a questionnaire, to gauge my depression, downness, and hopelessness. I scored ones (occasional depression, not frequent or constant depression.) 

“I’m not suicidal or anything, I just don’t feel very good.” 

For some reason, good or bad, she moved me into the room across the hall, the only difference, the new room had a window with views of the Beverly Hills flats. If I squinted I could see the building that used to be Loehmann’s.

The doctor came in, skeptical. Since this was our first meeting, I tried to explain that I am a hypochondriac who is deathly afraid of doctors. I hoped this would be our ice breaker. It was not our ice breaker.

He asked me about my symptoms.

I told him about the bump or lump in my throat. I told him that my Dad had oral cancer twice. He looked at it and poked it with a tongue depressor. “This?”

“Yeth.”

“That’s a taste bud.”

“Oh. Well, my glands have been swollen.”

So he felt my glands.

“Your glands are not swollen.”

“Oh, can you look under my tongue? It feels like there are weird spots.”

“Looks fine. Nothing unusual.”

“I was thinking it might be oral thrush.”

“Oral thrush was white spots, you  don’t have oral thrush.”

“Long dormant oral gonorrhea?” 

“Unlikely.”

“What do you think is causing my headaches?”

“Has there been anything in your life that has caused you stressed lately?” 

“Yes, my job, you see—” 

“Well, work could play a factor.”

“You see, Doctor, I am a very sensitive person.”

He nodded. He told me I looked healthy.  I asked him if he could still write a doctor’s note since I missed work. He said he would.

“But don’t tell them nothing’s wrong with me.”

“Don’t worry, I’ll just tell them you have oral gonorrhea.”

I thought, he likes me, he really likes me.

He then checked my blood pressure. 120/80. Then he left the room. 

Niecy Nurse came back to take my blood since I needed that checked for my blood pressure medicine. 

“120/80, so I guess it was you all along,” I bragged.

“You’re really going to say that to me before I stick a needle in your arm?”

We laughed. Old friends laugh.

She drew my blood. I survived. 

I asked her my favorite question, “Say you go home today and there is an envelope with $10,000 that you must spend on a vacation and you must leave tomorrow, where would you go?” 

She told me that she just returned from where she grew up, in South America, and that she would love to take her three kids back there for another trip. 

I asked what country she was from and she told me Guyana and we talked about the massacre that happened there so long ago. 

“I’m surprised you remember, no one remembers.”

There is a silence, unacknowledged, but I know we are both thinking of what transpired this weekend. 

I also thought how could anyone ever forget the Guyana tragedy?  It was probably my first introduction to the evil that exists in the world. Nowadays, we have a Jim Jones or a Sandy Hook or a Columbine or a Virginia Tech or an Orlando, every few months.

Clearly, all this sadness takes an emotional toll, but perhaps there is something physical that happens too. And my connection to this particular atrocity is simply that I’m gay, just like most of the victims. That I am a person who has danced in a gay club, thinking, this is home, this is life. I didn’t know one person that was at Pulse on  Saturday night, but the stories that come forward, I can’t shake them. I don’t want to shake them. 

So I sit down and write a story about my trip to the doctor where I try to see the funny, because you know,  life can be funny.  And it’s important to laugh, especially when all you want to do is cry.

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Guest Blogger, Gretchen Meinhardt

10268534_10152910983861554_5398660021533019161_nI don’t wade into political topics all that often. I’ll just say it’s not my particular area of expertise and leave it at that. But I do want to share the story of a family. I’ve known Gretchen Meinhardt since we were in college. A few months ago, I shared a piece she wrote for CNN. Today, I am sharing a copy of the letters she has sent to her legislators chronicling her experience with the Affordable Care Act for her family. Primarily, I share this so that a solution might be found where all children, and adults for that matter, receive the best healthcare possible, regardless of where they fall on an income scale. I don’t really know who might read this, but maybe Gretchen might also connect with other parents who are in a similar situation. I have included her email, for this purpose. If you have a similar story, please feel free to share it.

Guest Blogger: Gretchen Meinhardt

Perhaps the Affordable Care Act has helped some people, but it has been devastating for families like mine who struggle to care for a child with disabilities. When we adopted our newborn son Raef in 2001, we had no idea what we were in for, not only as new parents, but also as caregivers for a baby with significant, lifelong healthcare needs. Our joy as new parents soon turned to fear as he began having seizures – 200 to 300 a day – that were impossible to control. At only 8 months old, he had radical brain surgery (a right hemispherectomy), which was scary, but such a blessing because he has been seizure-free for 13 years now. The seizures and surgery left him partially blind and with limited use of the left side of his body (cerebral palsy), but he is an active eighth grader, with a delightful sense of humor and zest for life. The seizures and subsequent disabilities are not Raef’s only challenge, however. He also has Neurofibromatosis Type 1 (NF1), a genetic condition which causes tumors to grow on the nerves. At just 2 years old, he endured 14 months of chemotherapy to treat a tumor on his optic nerve. That tumor has remained stable, but Raef faces ongoing NF-related challenges, including learning disabilities, ADHD, sleep issues, and fine motor difficulties. In spite of all of these challenges, we wouldn’t trade Raef – or his younger sister Gwyn, his biological sibling whom we also adopted – for the world. We love them with all our hearts and delight in being their parents. The thing that breaks my heart and keeps me awake at night is that now, thanks to the Affordable Care Act, we may not be able to afford the medical care our son needs. For many years before the ACA, we were blessed to have excellent health insurance through my husband’s work as a safety manager with a large international company. However, when the country was preparing for the implementation of the ACA, that company chose to reorganize in order to afford the increased health care costs and requirements resulting from the ACA. My husband was among the “middle management” that was laid off to pay for these increased costs. And there went our health insurance, right along with his job, because we could not even afford the COBRA premiums. Since he was laid off more than a year ago, he has been actively searching and interviewing for jobs. But like many in his position, he has struggled. Although he is working temporary contract jobs in safety management, he has been unable to find a full-time position, with benefits, in his field. In addition, I work as an adjunct college instructor, and while it is relatively easy to find part-time positions, it is becoming increasingly difficult to find full-time college teaching positions that offer benefits. So far we have managed to piece together health coverage for our family, but only because my husband is a veteran and can get VA healthcare, and because we reluctantly put our children on state health insurance (Medicaid) until we could find employment with benefits. However, it was next to impossible to get state coverage for the children, even though we qualified based on income after my husband lost his job. Now we live under the constant threat that we will lose the children’s Medicaid coverage before we are able to find permanent, affordable health coverage. During Medicaid’s latest notice they would be dropping coverage (which we are appealing), I once again priced health coverage through the ACA marketplace. If we go through the marketplace for health insurance, the medical costs in 2015 for my children and me will be between $16,000 and $30,000. This includes premiums, prescriptions, and out-of-pocket medical costs. (We always meet the out-of-pocket maximum with our son by about Valentine’s Day.) It’s hardly “affordable,” but with a child like Raef, health coverage is hardly optional. As the New Year and a new session of Congress approach, I ask that you take a serious look at the ACA and consider whether it is truly ensuring “affordable” health care for Americans. If you would like to know more about my family’s experience, please feel free to contact me. I am happy to help in any way, even if it takes meeting with legislators or testifying before Congress. Thank you for your careful consideration of this important issue.

Best regards,
Gretchen Meinhardt
Kansas City, Missouri
cliffmein@hotmail.com

Guest Blogger, Michael Patrick Gaffney: I Hadn’t Had a Bath in 20 Years!

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My friend and frequent guest blogger Michael had a medical emergency this week. I’ll let him tell you. But even before the situation passed, so to speak, I asked him if he might want to write about it. Tonight he sent me this. I do believe that when we are processing life’s challenges, it can help to sit down and write about it. And if we decide to share what we’ve written, who knows, it might help the people who read it too. I’m glad you are feeling better, my friend. You are loved!

“I Hadn’t Had a Bath In 20 Years!”

Like most people in the world today, I’m often stressed out and always carrying around a certain amount of anxiety. I’ve tried yoga and meditation but I just don’t have the patience, I guess. But I do find my peaceful place in walking. I love to walk! I just love it! I am a self-proclaimed Power Walker. I love to walk my dog, I love to walk to the store, but most of all I love to take long walks up into the canyon where I live. I call it my church. I love to power walk up to the top of the hill, with my arms swinging back and forth like Oprah as Sophia in “The Color Purple”, and look out and watch the hawks glide past me. Tuesday was a typical day on my power walk and just as I was about start my way down I felt a slight pain in my right testicle. Hmmm…Weird. 10 minutes down the hill I started to feel a shooting pain in the middle of my back. Ouch! Really weird…By the time I arrived home I was moaning and groaning, deciding if this warranted calling 911. Instead I called a neighbor and asked her if she would take me to the E.R. A drive that should have taken us 20 minutes took over an hour in rush hour traffic. I screamed and cried and prayed out load. I took my seatbelt off at one point and got on all fours in the front seat. I couldn’t stop moving. I was like a terrified Pekingese heading to the vet. Then the nausea started, “I think I’m going to be sick”, I screamed! We were at a dead stop so I opened the car door, but it was a false alarm. But now all the people in the cars around us knew there was drama going on and kept staring, waiting for me to blow!

When we finally pulled into the Emergency Room drop off point my neighbor stopped the car and I jumped out and power walked through the front doors. There were about 20 other people sitting in the waiting area waiting to be seen. I knew enough about how these places worked, that I knew I had to act fast and not hold anything back. “Um…Hello. I’m here. What do I do?! I’m in a lot of pain. Please help me, HELP MEEEEEEE!!!” I was spinning around in circles swinging my murse around me. I think somebody must have called a code: CRAZY, because the next thing I knew I was in a wheelchair sitting at a desk with a woman asking for my I.D. Just as I pulled it out, I announced to the entire ER, “I’m going to be sick!!!” Magically, a pink bucket appeared from under her desk and onto my lap. In between retching and heaving, I apologized to the entire room, “I’m sorry everybody, I’m so sorry!” I heard giggling from the peanut gallery but I didn’t have the strength nor the quick wit to deal with a heckler in the crowd, so I let it go. Next thing I know I’m in triage and I hear one of the nurses say, “We can smell a kidney stone a mile away.” A very handsome, blue-eyed nurse named Gary tells me he is giving me a drug called Dilaudid. I feel it hit me in the back of my neck and then BAM! “That’s a Lindsay Lohan cocktail”, I mumble. “Mikey likey!”

I am wheeled to another room, given an MRI, where they confirm that I have two kidney stones, one of which is trying to make its way through my ureter to my bladder. The other is a much larger stone waiting in the wings of my kidney. I am wheeled to yet another room and as the nurse leans over me checking my I.V. I notice her name tag, which reads, Stella. Given the fact I am an actor and that I am flying high on a powerful pain-killer seven times stronger than morphine I give her my best Marlon Brando, “STELLAAAAAAAAAA!!!!” She just gives me a knowing smile and goes about her business.

An hour or so later the pain has subsided dramatically and I am discharged with a couple of prescriptions and a strainer to pee through and sent on my way.

The next couple of days were filled with intermittent bouts of pain, nausea, constipation and vomiting from the pain meds. Being in that kind of pain was very lonely and isolating. It made me think about people who deal with chronic pain, people who suffer in silence on a daily basis and how lonely they most feel.

On Thursday night, a friend suggested I try a hot bath before bed. I hadn’t had a bath in 20 years! I’m a shower only kind of guy, but thought it was worth a shot. I filled the tub and put on my New Age Essentials channel on Pandora. I laid there in that hot water and thought about the last few days and what I had gone through. I felt like a little boy again, minus the Mr. Bubble. I felt so aware of my body and my breath. I was comforted by the warm water and my breathing. I had found my peaceful place again. I dried off and went straight to bed. The next thing I knew it was 6:03am and I went to use the bathroom, and without any bells and whistles or drumroll or pain even, out popped my kidney stone. It was about the size of a small black pepper kernel. That tiny little thing had caused so much pain and suffering and brought me to my knees.

Looking back on it all, I think that that hot bath was a turning point. It was such a moment of self-preservation and being totally aware of my body and what was happening and accepting the pain and truly surrendering.

I do feel a little like a ticking time bomb now with that other stone waiting for the perfect inopportune moment to escape my kidney and send me back to the emergency room. But until then I will continue to take my power walks and my new nightly hot baths to find my peaceful place. I might even pick up a box of Mr. Bubble.

Guest Blogger, Theresa Barnhart: Aunt Ruth, A Beautiful Lady

Update-your-salonMy Mom called me this afternoon and told me she had been writing about my Great Aunt Ruth and her battle with Alzheimer’s disease. She wondered if I might post what she wrote as a guest blog. Of course, I said yes. Although she does not write about it here, my Mom also worked at a nursing home for several years and she has always had a tender heart for those suffering with Alzheimer’s and dementia. As she says, September 21st is World Alzheimer’s Day and I think we all know loved ones who are affected by it everyday. I’ve included a link to ALZinfo.org right here if you would like more information about the disease or what you could do to raise awareness or help others in need. My Mom’s words brought back many sweet memories when I read them tonight and she’s right, our Aunt Ruth was a beautiful lady.

Aunt Ruth, A Beautiful Lady!

This has been one of those weeks when I have been thinking of my Aunt Ruth and how this beautiful vivacious lady was robbed the last few years of her life by this disease known as Alzheimer’s. Early in the week, I started to receive a newsletter from the Kansas Association of Alzheimer’s. Mid week, I found Aunt Ruth’s memory card I received at her funeral. Then today, I saw on Facebook an article about Sunday, September 21,2014, being World Alzheimer’s Day. I thought maybe this came for a reason. Everyone forgets occasionally how to spell a word (I’m famous for that all the time) or forgets where the keys are, etc. I believe we all have memory loss now and then, but it’s more noticeable as we age. It doesn’t mean we are getting Alzheimer’s, but it is something to be aware of. Aunt Ruth was always a happy outgoing lady and I wondered, “How can this happen to a lady who has always put others before herself?” She was a beautican. Her salon was in her home. There she could take care of her family. When she started to cut back her work, she would still take those ladies who were more like old friends instead of clients. She even started picking up her clients who didn’t have a way to the shop and do their hair and then take them back to their home. Those ladies for various reasons could no longer drive. Now that’s service! That’s just how she was. She loved all those who entered her home and those who entered her shop. Everytime we would stop by to say hello she would greet us and always introduce us to whoever was there. So lovely and outgoing, you couldn’t help but feel the love she had for us as if we were the most important people in her life. The first time I came to Kansas with Ray to meet his parents and siblings he said he wanted to take me to Dewey to meet his uncle and aunt. It was well into the evening and Uncle Ken had a early morning flight so they went to bed earlier. I was sorry we got them out of bed but when they greeted me it was the nicest, sweetest moment as Aunt Ruth gave me hugs and let me know they were glad to meet me and, of course, see Ray. (He couldn’t do anything wrong by them.) It was love at first meeting. We were married two weeks later and came to Oklahoma and Ray got a job at Phillips 66 in Bartlesville. We moved to Bartleville. Uncle Ken and Aunt Ruth were just a few miles away so I was able to go see Aunt Ruth at the shop and spent part of the day with her. About once a week her mom would come in and visit and have her hair done. She was also a very sweet lady and I enjoyed visiting with her, too. You might say Aunt Ruth was her mother’s daughter. Aunt Ruth’s daughter too is like her mother. Phillips moved us to Kansas City then turned around and sent him back to Bartlesville for some training and he was there and I was in Overland Park with a baby about eight weeks old. We would go down to Dewey several times and Aunt Ruth opened her home and took me and Ray Jr. in. One time while we were there, Ray Jr. started crying and I couldn’t get him to stop. We checked him over making sure his diaper pins hadn’t opened. They didn’t use the tape on throw away diapers at that time. Anyway Uncle Ken took him in his arms and rocked him to sleep. I have so many beautiful memories of her. Even when she got to where she didn’t know us we could feel her love and we hoped, in her mind, she could feel our love. Even though she couldn’t remember us we could still remember her and love and cherish those momeries we made with her. As long as there is life, someone will remember and never forget. Pray one day there will be a cure for this devastating disease. It can take away a person’s mind, but there is always going to be someone who will remember. God blessed us with this beautiful lady. Before she passed, I whispered in her ear that I loved her and that I would see her again. I told Ray I thought she heard me. I will remember for you ’til someone remembers for me.

Guest Blogger, Megan Heyn: Balance

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My friend Megan recently went through a rough patch with her health. She is much better now, thank God. A few weeks ago, I asked her if she might be interested in writing about it. She said yes. This is Megan’s story and I’ll let her tell it, but I want to share what happened when she wrote something on her Facebook wall on her birthday a few months ago, when she was in the middle of a dark time. She shared what she was going through and her wall was filled with messages from people, friends and family, telling her that she and her husband Patrick, her parents too, were in their thoughts and prayers. A million I love you, Megan!’s. I know it was a sad and scary birthday, that more than anything her birthday wish was to feel better again. I’m so glad that she is better, obviously, and I’m glad she is willing to share her story. I think there is something powerful about writing about what you’re going through, while you’re going through it. Maybe as we write, we understand ourselves and life and our loved ones a little better. If you know Megan, you know that she is a light, sunshine, and I think if you don’t know her, you’ll see that light in the way she has honestly shared this chapter.

Balance: a state of equilibrium; mental steadiness or emotional stability.

Balance is the key word. It’s the word my dad always uses to enlighten me when I get stuck or confused in life and need guidance. Simple enough concept, yet it’s always been one of my biggest struggles. If I read that it’s good for you to drink 50 oz. of water a day, I’ll start drinking 100. Wait, what? A new study says meat is bad for you? Then consider me a vegan! (Notice how I skipped the preliminary step of being a vegetarian. Go big or go home!)

For four years I lived my life as a devout new age health junkie. I started with the easy stuff, you know, eating a sandwich on lettuce instead of bread (ridiculous). Then I graduated on to the hard stuff, and before you know it, I had a mason jar under my sink filled with homemade mouthwash, and a husband scratching his head and cursing my very hippie existence. The goal of this life style was to achieve perfection, both physically and mentally. To anybody on the outside looking in, it seemed that I lived the ideal lifestyle to achieve health, beauty and success. I was an organic-gluten-free vegan, kicked off everyday with a green juice, grew my own sprouts, made my own kefir, exercised 5 times a week, meditated daily, attended new age conferences, constantly reading at least 2 self help books at a time, never drank or did drugs, and of course was a consummate positive thinker.

Well, you know those ladies who get addicted to plastic surgery? They start with a “minor lift” and then 6 surgeries later, they’re barely recognizable as human. That’s what happened to me. I was addicted to self-improvement and healthy living. And instead of it making me the most beautiful, healthy and successful person around, I wound up with an incurable disease, ulcerative colitis. It’s an autoimmune disease of the large intestine. To be clear, that’s the area where all this healthy food was passing through. (Sweet, sweet irony.) I’ve spent so much time laughing about this! (Side note: I’ve spent zero time laughing about this).

It’s been a year and a half since my diagnosis, and I am just now bouncing back from my worst colitis flare yet. And, surprise surprise… this flare came as a direct result of my pursuit of “natural perfection”. You see, every time I’ve gotten this illness close to remission, I go off my medication and try to “do it the natural way,” a way that doesn’t involve prescriptions with scary side effects. Acupuncture, herbs, this, that, I’ve tried it, and each time I have crashed and burned. I always wind up even sicker than before, and consequently needing even more prescriptions to get back on track.

This particular flare began when I went off all meds and tried to heal strictly with diet and supplements. I was an idiot. I’m not saying that it can’t be done. It can… but I should have known with my previous record that it wouldn’t work for me. I spent two full months unable to leave my house with the exception of my frequent trips to the doctor. For those unfamiliar with the disease, your colon becomes inflamed and ulcerated so during a bad flare, you are in the bathroom passing blood and mucus all day. It was pretty common to rack up 20 trips to the bathroom daily. On top of all that, I developed a fissure (a cut in the rectum) and hemorrhoids as a result of the frequent flyer miles I logged on the toilet. My insides were shredded and so was my soul. I became severely anemic from all the blood loss. I couldn’t sleep because I was in constant pain, and even turning on my side would cause another even more painful trip to the bathroom. I couldn’t eat because that made me sick. One day it took me two hours to eat a single egg. I couldn’t be left alone because I didn’t have the energy to get up and feed myself so my mother and father had to come and stay with me so my husband could go to work. I was officially an invalid.

But thank God for those prescription drugs that I have always been so afraid of, because they saved me… again. This time around, I won’t be going off them without explicit consent from my doctor. I’m still struggling, it may take me months to get back to a state of health that I’m satisfied with, but I’m so grateful to be a fully functioning human now.

And it all comes back to balance. It’s ok for me to be on medication, that is just what my body needs. It is ok to eat healthy, but you need to “treat yo self” on a regular basis. So for those of you beat yourself up after eating that cookie, I say celebrate the fact that you posses the ability to indulge every now and then. I’m a prime example that being all healthy all the time doesn’t work for everyone. I’ve given up on perfection. I will never be perfect. And if that is the case, I might as well loosen the reigns and live a little. Every time I let go and add something to the “bad” side of my balance is a huge victory for me.

Last week, for the first time in forever, I used non-organic bath products, chalked full of paraben. One small step for humanity, one huge step for Megan Heyn.