Blogging: Cheaper than Therapy

5 Apr

I’m in a tough place today.

It’s April. The stretch of time between March 14 and April 17 is hands-down the hardest time of year for me to face. Everyday, small stresses are harder. Everything cuts sharper during these few weeks. I simultaneously love and hate this time of year. The bluebonnets are out. I’ve always loved the fields and fields of blue along the highways during March and April. The natural beauty is a reminder that life goes on, even after things that make you feel as if your world has ended.

I spend this time of year trying both to remember and to forget. Kenneth’s birthday is March 14, and the day he left this Earth is April 17. I want to remember his life, but I would so dearly love to forget certain things. If you’re a parent, you know that when your baby hurts, you hurt. It’s so much worse when it’s a hurt you can’t fix with a cuddle and a kiss. It’s galling that my love as a mommy wasn’t enough to make it all better, that instead Kenneth’s suffering was ended in the way, ultimately, all of our suffering will someday end. I was supposed to go first, not him.

***

I’m in the middle of a health flare. Food is back to being my enemy, after a solid year of having a good enough handle on what to eat and what not to eat that I’ve gained back 10 pounds. I’m no longer so thin that strangers feel the need to comment on it. It’s a very uncomfortable thing to have the feeling that people are judging you be confirmed by the snide “Girl, you need to eat a cheeseburger” comments. I eliminated wheat and a bunch of other foods from my diet and added a nightly glass of red wine. Hey, calories and heart health, right?  I take my Domperidone (medication for my Gastroparesis) three times a day. I was actually eating normal-sized meals and relatively normal foods, with a few nods to my cranky gut in the foods I avoid. It was working.

For two days now, I’m back to being nauseous and to feeling full quickly. I’m also having some autoimmune symptoms, mainly in the form of fatigue and all-over pain,  so I think I’m just in a big fat flare overall. I’m taking Plaquenil and Prednisone. Plaquenil is an anti-malarial drug that is also known to reduce inflammation, but it can take months for it to become effective. Prednisone is a steroid that works quickly to control inflammation, but it has a lot of very unpleasant side-effects if taken long term. Since I was just diagnosed with the Mixed Connective Tissue Disease in November, the idea is that I’ll take a low-dose of Prednisone until the Plaquenil starts working. The problem is that so far, the Plaquenil has not been working well enough. My rheumatologist started making noise about Methotrexate at my last appointment. I’ve convinced him to let me try the Plaquenil for another few months before we go that route. Methotrexate is a chemotherapy drug, and it scares me.

When I feel good, I think “I can do this. I can keep working full time, manage these diseases, and be a good mom.” When I feel bad, like I do today, I start to wonder if it’s just a matter of time before I end up having to quit work. I have quite literally trained my entire life to be able to have a career in music. Music is not so much what I do as it is a piece of who I am. Further, I’m a singer. My body is my instrument, and right now my body seems hellbent on destroying itself a little at a time. Lung issues are common with my autoimmune disease. Lung issues would be devastating to me as a singer. The unknowns of this disease are terrifying.

I see the irony in how I’m feeling today versus my last post about positivity. Tomorrow, I’ll pull up my big girl panties and deal with it again. Today…. well, today, I’m going to engage in a little therapeutic whining that will hopefully help to silence the little voices in my head that say “It’s too hard. Can you really keep doing this?”. Blogging helps.

So does Netflix.

The Difficulty of Positivity

3 Apr

I’m convinced that hanging on to positivity is the key to mental health.

I don’t mean that in some Pollyanna way. Life isn’t always sunshine and roses. In fact, a lot of the time, it’s really pretty crappy. Staying focused on the hard things is just a recipe for misery, though. Positivity isn’t acting as if nothing is ever wrong. It’s the belief that although things are bad now, they will get better. It’s the belief that there is goodness and beauty in this world right alongside the ugliness and pain.

My husband got laid off in March. It becomes effective in the first week of April. He’ll file for unemployment benefits, but naturally they are nowhere near what he’d be bringing home if he still had his job. I will become the sole breadwinner for a while, at least until he is able to find another job. Negative thinking would be easy to fall into right about now. Money will be tight. My husband has always worked, ever since he was a teenager, but now he has to cope with the psychological blow of being unemployed and reliant on his wife’s income.

I am struggling with my autoimmune disease. I’m a “take charge” person. I don’t sit around and wait for problems to solve themselves; I take action and try to find a solution. In the case of this disease, I have very little control and there are no solutions. I’m taking Prednisone and Plaquenil right now. My rheumatologist had me wean off of the steroids and take just the Plaquenil, since steroids can cause a whole host of problems if you’re on them long-term. As soon as I stopped taking the steroids, symptoms came back with a vengeance. My lab work showed that the Plaquenil is making a difference, but it definitively has not put me into remission. So, back to the Prednisone I went. I’ll stay on it for another month or so and then wean off of it again. If the Plaquenil isn’t making enough of a difference in my antibody levels at that point, my doctor says he will put me on Methotrexate. Methotrexate is a chemotherapy drug with some pretty harsh side-effects, so I’m hoping it doesn’t come down to that.

It would be really easy right now to wallow in “poor me”.

Staying positive is not something that comes naturally. I have to fight for it. I have to force myself to find the good things among the bad. My husband may be out of a job, but having time without a job while drawing unemployment will allow him to study for some IT certifications that will make him able to land a better-paying job. That’s a positive thing. My health is uncertain and not the greatest, but I’m not disabled yet. I still can do the things that give me joy. I may cry a little if I have to give up my red wine (methotrexate stresses the liver, so alcohol consumption is verboten while taking it), but better to give up red wine than to have organ damage that could take me from my kids.

We have a comfortable home. We have two wonderful children to brighten our day. We have a good marriage and we’re coming up on our 10th wedding anniversary this July. We have cars that run, clothes on our backs, and food in our bellies.

If I can stay focused on those positives in the face of the struggles, I will be okay. I can’t control what life throws at me, but I can control how I respond to it.

Just keep swimming, just keep swimming, just keep swimming….

Shaking out the dust and starting fresh

24 Feb

Blogging, like life, has seasons. It’s difficult to keep a blog going long-term. After a while, it feels like you run out of things to say that are relevant. In those seasons, it’s easy to let your blog lapse for a few weeks. A month. Over two years.

Well, I am shaking the dust out of the rugs, throwing back the curtains, and starting again. Hi there. I’m back.

What is new in my little corner of the universe?

My son is in Kindergarten. He’s wearing his first pair of glasses and knows how to read. He’s obsessed with becoming a fossil hunter, “quality” coloring, and is an overall awesome kid. My daughter is 3, goes to preschool twice a week, can write her name, and is full of spunk and sass. My husband has had a career change, from Retail Management Hell to IT. I am now working with the high school set instead of the little people.
So, that’s the family. Now on to me.

A little over two years ago, I started to get sick. I was nauseous all the time. I was bloated and had a lot of abdominal pain. I lost 25 pounds very quickly, without meaning to. My gallbladder was found to be non-functional, so out it came. The symptoms persisted. I was checked for H. Pylori (negative), Celiac Disease (negative), and a host of other things. I was scoped and found to have Gastritis, Duodenitis, and Esophagitis. I was sent for a gastric emptying study and found to have mild-moderate Gastroparesis. I changed my diet. I started on medication. The gut pain and other unpleasant issues persisted. I was checked over for Ulcerative Colitis and Crohn’s (both negative). I was treated for SIBO and finally diagnosed with IBS.

I changed my diet again, but I still wasn’t getting better. I was starting to have a ton of strange, seemingly random symptoms. My words would come out garbled and slur. I started having numbness  and tingling in my hands and arms. My arms started to hurt with even the slightest touch. I was getting headaches and running low-grade fevers. I was exhausted all the time, and always felt like I had the flu. To make a very long story short, I finally convinced my doctor to send me to a Rheumatologist. The Rheumatologist did his exam, ordered a metric ton of bloodwork, and then diagnosed me with Mixed Connective Tissue Disease.

Mixed Connective Tissue disease is a rare autoimmune disease that has features of a lot of autoimmune diseases. It’s a chronic condition that I will have for life. 1/3 of people with this disease go into long-term remission, 1/3 end up with disabling complications, and 1/3 end up with a progressive form that does not respond to treatment. So, 1/3 do well while 2/3 are at the very least disabled. These are some pretty unhappy statistics that I am still taking the time to wrap my head around.

I am following doctor’s orders. I am taking my prescribed medications and I am still working full-time. I have no idea how long I will be able to continue to work full-time; already this year I’ve had to miss so much more work that I would like. I love my job and I would say that I’m good at it, but it’s very demanding. The idea of disability is very scary. I’m still in my early 30’s. I have worked since I was 15 years old. I have given my blood, sweat, and tears to get where I am. The thought of it all being taken away by an illness that I have no control over is frightening and more than a little depressing. I’m not there yet, but with every sick day that I have to take, I wonder if that day is coming sooner rather than later.

Writing has always been a way for me to organize my thoughts. A serious chronic illness probably isn’t the most thrilling topic in the world, but I need to write about it, if for no other reason than to have a place to put my thoughts that doesn’t burden my family and my friends. I hope that those few of you reading this are willing to follow me down this road, wherever it ends up taking me.

A Repetitive Theme

29 Dec

Today, my four year old looked at Kenneth’s picture on the wall and said “That’s my brother Kenneth! He’s in Heaven though.” He thought for a minute, then asked, “Mama, when Kenneth is all done being in Heaven, can he come to my house?” 

It just about broke my heart to have to tell him that people can’t come back from Heaven. I posted about what he’d said on a small, private message board, and one of my friends said something that I’ve heard many times: “I don’t know how you do it.”

The truth is, most days I’m not sure, either. The answer has changed over time, and sometimes it’s different from day to day.

In the beginning, I got through by trying to remember to breathe. I gave myself over to my grief body and soul. If I wanted to cry, I cried. If I wanted to yell and scream, I waited until I was home and blistered God’s ears. 

Now, it’s a little different. In some ways, the beginning was almost easier because I knew to expect the grief and the overwhelming pain. There was no surprise in living in the darkness. Just shy of six years later, things in life are mostly normal. Mostly. Every now and then, a moment happens that is a kick to the gut, a knife to the heart. Those moments are hard, because they never seem to happen at a time I expect. They catch me off guard and take my breath away, and many times they happen in such a way that I have to maintain my composure, like when my son asks me if his brother can come to his house.

I should never have to explain to my son that his brother will never come to our house, but it is our reality. How do I do it? By doing what I have to do, and doing my best to do it well. My son deserves to have his questions answered, even if it feels like answering the questions steals my breath and knocks me flat. Will I cry later? Probably. I’ll save my tears for after my son is in bed, use this blog for catharsis while he watches his nightly cartoon, and pray that somehow God gives me the strength to do this for another round.

All of us are given things in life that we didn’t choose, but were instead chosen for us. I didn’t choose any of this, but I have it. In life, we have a choice. We can get knocked over by whatever unfair circumstance that gets dished out and choose to stay down and stay bitter, or we can choose to allow our grief and hurt to have its season and then try to live again. You can’t choose what happens to you in life, but you can choose how you respond to it.

How do I do it? I’m too stubborn to give up. I love my other children too much to have their lives overshadowed by Kenneth’s, but I love Kenneth too much to pretend that he was never here and didn’t matter. It’s a balancing act. Sometimes I fall, but I get back up again.

Nobody ever said life was fair or easy.

Oh Texas, My Texas

28 Dec

I am a Texas girl. I’ve lived here nearly my entire life, even though I was born in a different state. I love Texas– the food, the culture, the friendliness of strangers to other strangers. The politicians and I very rarely see eye-to-eye, however. Sometimes, they make some decisions that leave me wanting to slap them silly.

Take the decision made during the last legislative session to defund Planned Parenthood, for example. Planned Parenthood provided a very large portion of the women’s health services to low-income women in this state, but they are also an abortion provider. The good ol’ boys (and a few token girls) didn’t like this, so they decided not to give any State funding to Planned Parenthood. The federal government took issue with this and said they’d cut off funding for health programs unless the Texas legislature funded all organizations equally. Texas stayed stubborn. The federal government cut off funding. The end result? Low-income women are finding it much more difficult to get well-woman exams, and, as a consequence, birth control.

Now, I’m pretty well against abortion; I think it’s morally wrong except in the most extreme circumstances. I’m also smart enough to know that if you give women the tools to manage their own fertility, the demand for abortion goes down. It seems to me that if the government here in Texas wanted to reduce abortions in the state, the way to do that would be to fund access to women’s healthcare and to birth control. In fact, research backs me up. 

Image

 

The good folks over at http://www.everydayhealth.com sent me this handy infographic; you can find it on their website by going here: http://www.everydayhealth.com/sexual-health/free-birth-control-can-reduce-abortion-rates.aspx

The Republicans in Texas are cutting off their nose to spite their face. It doesn’t take a genius to figure out that less access to birth control is going to mean more unplanned pregnancies, and therefore a higher birth rate and a higher abortion rate. 

Let’s see here…

  • Texas has defunded public education
  • Texas has defunded public health programs 
  • Texas has reduced access to birth control, meaning the birth rate in low-income families will rise.
  • Texas has a large network of for-profit prisons, all of which demand a 90% occupancy rate.

Anybody else see some problems with the way things are going right about now?

In a World Gone Crazy

22 Dec

Today marks eight days since a gunman took the lives of 26 innocents, most of them little children between the ages of 6 and 7 years old. 

I saw the news on my lunch break at work. I had pulled out my phone to mindlessly scroll through Facebook updates while I waited for my food to heat up in the microwave when I saw status after status about the shooting. I told my co-workers what I’d read, and spent the rest of my lunch break in stunned silence as I tried to comprehend.

After lunch, I teach third graders for an hour, followed by fourth graders. Every Friday, the PE teacher and I combine all of our classes to team-teach out in the gym, so that meant that I had an entire grade level of kids to watch over. I held it together during third grade, but just before fourth grade, the PE teacher got a call from a friend. That friend told him that most of the victims had been children.

I generally don’t react emotionally to the news. I didn’t cry over the Colorado shootings earlier this year, even though I was sick over it. I cried over this news. I had to go into the PE teacher’s office for a few minutes to get myself together so that the kids wouldn’t wonder what was going on.

If you are looking for the cause of this, look no further than the state of mental health treatment in this country. Guns didn’t do this. Guns couldn’t have prevented this. Arming teachers won’t prevent another Newtown. Neither will disarming the general public. To prevent another Newtown, we need to look hard at a system that requires families to pay upwards of $30,000 per month in order to put their children into inpatient care. We need to ask why most insurance companies limit visits to see psychiatrists and psychologists to 20 or so visits per year. We need to help the parents of mentally ill children, not demonize them for having a child that is “out of control” while simultaneously denying them any real treatment for their child.

I have taught kids that are mentally ill. I have taught violent kids. I have seen “the look” in a child’s eyes and known in my gut that if something were not done to reach that child, he or she would hurt someone one day.

If you want to prevent another Newtown, start by being willing to help children– all children, not just the ones that are cute and loveable.

I think I might be a terrible person.

7 Nov

I’ve been reading about a new approach in treating kids with HLHS (Hypoplastic Left Heart Syndrome, also known as the heart defect that stole Kenneth from us). Apparently researchers at Boston Children’s Hospital have had some success in getting the left ventricle to grow, meaning that HLHS kids that fit the criteria to be a candidate for their procedure have a chance at having two functional ventricles. 

This is some pretty huge news for the heart community. It’s a wonderful advance. It is hope for families and for children. So, why am I so mad?

I’m mad because no matter what miracles modern medicine discovers, they are too late for us. Too late to help my baby boy, who I miss with an intensity that still sometimes catches me by surprise. It is too late for us, and it just isn’t fair. I want to stomp my feet and kick and scream about it all.

From what I have seen, Kenneth’s subset of HLHS (mitral stenosis, aortic atresia for those that wonder) would have meant that he wouldn’t be a candidate for this procedure anyway. Small comfort.

I miss my son. I want him back. 

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