I got on a plane and went to a place where I wasn’t sick. For two weeks. no blogs, no therapists, no doctor’s visits, no support groups.
I walked the streets of London, kicked it’s ass actually. I ate curry and drank tea and got rained on and rode the bus and saw a few plays. It was wonderful.
We’re about to land in Houston and I’m about to be sick again. Houston is where I’m sick. Shit.
One of the consequences of having congestive heart failure has been going up three dress sizes. Or maybe it’s the stress eating. Whatever.
Anyway, I have had to go through my closet with each size change and clean out what doesn’t fit. A virtual field day for my tiny housekeeper who is usually the recipient of my hand me downs.
But I had a beautiful red dress that I bought for a wedding. I don’t think I ever wore it. I wanted to find it a good home and I thought of Kristy from the gym. I always joke that she has my “after” body.
I took it to the gym and left it hanging in the bathroom for her. Michelle, another petite patron, saw it first and tried it on. Cherrise, our trainer, took a picture of Michelle in my red dress and sent it to Kristy, telling her she better get her little behind to the gym to take possession. Before she got there, a couple of other size fours got in on the action. They then started texting selfies to Cherrise of themselves in red dresses. Thus began the red dress wars at the Toning Zone.
All of this happened without my knowledge. When I got to the gym this morning (yes, I’m still dragging my sorry ass to the gym), Karen said, oh, you’re the one who started the red dress thing. I didn’t realize I had started a thing. All I did was bring a dress to the gym that was three sizes too small. And then those skinny bitches started fighting over it. Maybe they need to eat something. 😉
I’ve thought about renaming my blog. I chose “When Does the Healing Begin?” when I thought I had a reversible type of Cardiomyopathy. If the cells in my heart are morphing into unproductive cells, when do they actually stop that process and start remodeling into muscle tissue that actually works. It was that tipping point that so fascinated me.
But, my heart is not going to heal. So, I thought about changing the name of the blog. I still might, but I’m pondering and will continue to ponder the concept of healing. What it means and what it doesn’t mean.
Diane Wells, who has taught Community Bible Study in Houston for years , once said that God cares a lot more about our holiness than he does our health. Sounds harsh? Not really. We are eternal creatures and this time on earth is but a blink of an eye. I believe that with every fiber of my being. If I didn’t, then I would not get out of bed in the mornings.
What I have always struggled with is how to fill the time God has given me here on earth until I get to see Him face to face. When June Carter Cash was asked how she was doing, she always answered in the same way, “I’m just trying to matter.” I think that just about sums up what everyone is trying to do. Everyone whose basic needs for safety and comfort are being met, that is.
So, I better get a move on. I have a legacy to build.
I wrote the following paragraph a couple of weeks after my surgery in February. Funny thing, I started feeling better so I never posted it. But today I found out that I’m not getting better. In fact, I’m worse. Despite the surgery and the medications, my heart is giving out. Rick and are are still going to Carmel for the summer. When I get back in the Fall I will receive all the necessary tests to prepare me to get on the transplant list. Hopefully I won’t need a new heart for a long time, but cardiomyopathy has a mind of its own. Also, I will have to get a lot worse before I’m eligible. That involves some incredibly unpleasant things that scare the living hell out of me.
So, here’s how I felt in February. I had a reprieve of not knowing for a few months and I actually enjoyed life with family and friends. Now I know. I always said I wanted to know. And now I do.
“I don’t know when to throw in the towel. The surgery has not made me better. I’m exhausted. I’m winded. I’m depressed. Rick and I have been looking at apartments. We don’t know how much longer I can climb the stairs. Today I looked into shower seats. Frontgate has a nice teak one. I haven’t gotten dressed since Monday. I can’t fit into anything. I guess I’m still bloated from all the IV fluid. Rick went into work today which was nice for me because I didn’t have to pretend to be OK. I’m not OK. I’m scared. I’m upset. I’m mad. But tomorrow is another day and who knows, maybe I’ll be better.”
I checked off another thing on my heart failure to do list. I went to a support group. The jury is still out about it. Will I go back? Did it help? Not sure.
Just when I was about to doze off as yet another woman shared her near death experience, Wanda Sykes took the floor. She was equal parts Jesus and equal parts F bomb. She had a valve replacement in 2007 and she recalled every single friggin detail in hysterical fashion. When she finished her long tale of woe, taking up way more than her share of allotted time, another woman said, “So, you’re fine now.” Translation: you had a one off heart problem that got fixed with a surgery and it was seven years ago so what are you doing here and why are you monopolizing the conversation.
Mom wasn’t cut out for motherhood when it was thrust upon her nine months after she graduated from college. It wasn’t easy trying to tame three young kids while seeking the peace and quiet she desperately longed for. It was tough on all of us.
It wasn’t much better when we grew up and had lives of our own. There was just too much baggage. We formed our own families and we moved on. Mom did too.
And then she got a do over and her name was Luba.
I didn’t really understand who she was and why she was part of my parents’ lives. Mutual friends had introduced Luba to my parents to help out with the house because Pearline had become too old to clean. Luba was all they talked about. She was wonderful and beautiful and smart and kind. Luba this and Luba that. Was she some sort of con artist who was going to rob my parents blind? Or even worse, was she going to break their hearts? I was very suspicious.
Then I met her and she put my suspicions to rest. She was the real deal. A sweet little girl who had come to the United States to be an au pair and had decided to stay. And she sincerely cared about my parents.
Luba quickly became part of our family and vice versa. Not long after she came on the scene, she married Roman. Mom was so proud of both of them and gladly accepted Roman into her flock. When Luba had a baby, Ania also became part of the family. Pictures of Luba, Roman and Ania dotted the hunt table in our den along with the other family photos. Luba loved my mother. Mom taught her how to cook, gave her marital advice, showered her with affection, loved on her. In turn, Luba doted on my Mom, looked up to her, sought her counsel and admired her in a way we never could.
When Mom was in the ICU for two weeks before her death, Luba sat with her every moment of every day that she wasn’t nursing her baby. Mom couldn’t talk because of all of the tubes everywhere, but her face would light up when Luba walked in the room. At the end, when we removed the tubes that were breathing for Mom, it was Melisse and Luba who sat by Mom’s side for five hours until she took her last breath.
So Luba is family. She gave my parents so much over the seven years she cared for first my mother and then my Dad. She gave my mother something we never could, the chance to be a good mother, and instead of being jealous or hurt, I’m grateful. Happy Mother’s Day, Mom.
Melisse did her residency at Baylor College of Medicine in Houston. The timing was really great, because Rick and I had an extra house. Technically, two extra houses. We each owned our own homes when we met, and we bought a third one shortly after we married.
Even though Rick’s duplex was in a bad neighborhood, it was larger than my teeny, little house, so we moved into it. I tried to sell my house for the debt, but the market had collapsed in 1985. It’s hard to believe Houston wasn’t always the robust economy it is now. Remember those days, “Staying alive til ’85”? Handing over the keys to the bank was never an option for me. Where I come from, you honor your obligations. As luck would have it, Melisse moved to Houston just when we needed a renter.
I wanted a crystal ball, a magic number, an expiration date. He didn’t give me any of those things. I saw Dr. Jerry Estep this week. He is the medical director of the heart transplant program at Methodist Hospital. No, I’m not getting a heart transplant. Not yet, at least. But Dr. Estep will monitor my disease and manage my symptoms.
What he won’t do is tell me what is wrong with me, how my symptoms will progress, how long I have, how I’m doing. This is not how I saw this meeting going down. I wanted more. He gave me nothing.
Rick liked him. He’s smart, don’t get me wrong. He used big, medical words like prognostication, titration, morbidity that would have had me glazed over if he had not been talking about me.
So, I’ll have more testing. I’ll tweak my meds until the side effects make my life intolerable. When upon standing I don’t just see stars, but actually collapse. Then we’ll know my blood pressure is too low. It’s a balancing act between which is worse, the disease or the drugs.
He wants me to keep him informed about how I’m feeling. That’s the litmus test. Do I get more or less out of breath when I climb the stairs? Is the feeling in my chest pain or just pressure? Am I more or less fatigued than usual? How much do I weigh each morning before I eat and after I void? (pee for the lay man).
So, this is how it’s going to be. I’m going to follow his instructions, take his medicines, weigh every morning, try to pay attention to how I’m feeling vis a vis yesterday or the day before, and just carry on…. I feel cheated. I want a refund. I wanted a crystal ball.
I left SMU to follow a boyfriend. I left pre-med to spite my dad. One thing I can say about my father is he was not a chauvinist by any stretch of the imagination. Melisse and I were expected to achieve to his lofty expectations no less than David. We didn’t have to decide what we wanted to be when we grew up. He did that for us. We were all going to be doctors.
Yesterday on our way to Wimberley we made a surprise visit to our friend Laura. She had posted some photos of her vegetable garden on her blog and I wanted to see it. She and her seven year old son were out in the yard playing so she hadn’t heard our phone call announcing our visit. I’m so glad she didn’t because what we saw wasn’t the company’s coming version of her house. It was the real version of her house. A house of love. Every where you looked love spilled out. Love of extended family, love of tradition, love of architecture and authenticity, love of the earth and most of all love of this precious little boy.
Just Passing Through 