Monday, September 12, 2016

Will worse things Come After Lyme? Tough Questions for a Mama's Heart

Jocie woke me with hard questions last night.

"Mom, what if God made me go through Lyme to prepare me for something harder? Like my kids being sick or worse?"

My heart squeezed tight and hurt. Telling my dear daughter that I couldn't promise there won't be other catastrophes in her life was not an option. But what if? Why?

How do I answer these questions and soothe her anxious heart.

So this morning, when I was awake (and not pulling my earplugs out because Chris's snoring shakes the house) I could share the truths I know.

I pray God can prevent worse things happening to her, even though I know as a 47 year-old there are many crap things in life.

While God does not always prevent or save us from the awful things in this world (and I honestly have some issues with that!) he does help us through them. He grows and changes us, and then we can help others.

We hope, pray, scream for a cure to be found for Lyme and other tick-borne diseases. SOON!

The reality is research is not well-advanced or well-funded. The CDC and Infectious Disease Specialists Association (IDSA) do not fully recognize chronic long-term Lyme. (Yeah - look that up.) Insurance companies do not work with Lyme Specialists and many will not reimburse treatment fully. (That's a soap box all in itself.)

So - I can't promise that a cure will be found for Lyme and TBD by the time she has children. But she will be treated with antibiotics while she is pregnant, and sometimes that prevents Lyme bacteria  from passing to babies.

Having Lyme myself has sucked. But, I truly see it as a gift.

If I didn't have Lyme I could not have fathomed how she was suffering. I couldn't have understood that the days you feel good enough for a fun conversation do not mean you feel good enough to get off the couch.

I know myself - I would not have been as sympathetic or compassionate. I would have pushed her and made things even worse. It would have been so much harder to know how to help her.

Without having Lyme myself, I would not and could not be the mother she needed to survive this awful disease.

So if her children have Lyme...she will recognize it. They will be treated early on in their disease. Their experience will not be what she has gone through. She will be the mother they need.

As for other awful things in life - a question no teenager should have to worry and lose sleep over  - she will remember she is strong enough to survive. She is strong and courageous. She is brave and conquering things we would fear.  And...Her mama's love and admiration will always be with her fighting life's battles along side her.

How in the world will I get to sleep tonight? I would love some better answers and explanations of whether worse things will come and how to handle them.

Wednesday, March 4, 2015

Having Lyme Together

"Mom, you never get the chance to be sick."

"No one ever asks how you're feeling. They don't seem very concerned that you have Lyme, too."

They do, but I try to keep the focus on her.

Also, I feel very guilty complaining about being sick myself when she is so very sick. It's like complaining about a paper cut to someone who had both their legs blown off. Unfortunately, I'm not that unselfish. I do complain. I even complain to her at times. But usually it's a, "Wow, you must feel this awful all the time. I'm so sorry," kind of complaint.

I realized very quickly that my Lyme infection is a gift. Learning through experience is the most complete way to learn. If I didn't have Lyme I would not understand half of what she's going through.

I understand...
...arms filled with lead tiredness.
...crying and crying and not really feeling sad, but not being able to stop.
...being too tired to shower.
...not caring if you ever wear anything besides pjs again. At least you don't have to think about pjs.
...that babesia treatment is hard. And LONG. awful flagel tastes.
...the yucky, yellow mepron is a million, billion times worse.
...just the thought of mepron can make you throw up a little in your mouth. dream of the day that there are no medicine bottles filling your cabinet, counter, bedside table.
...the couch is your best friend, but your bed is even better.
...charmin wipes are heavenly.
...choosing what to eat is an ordeal that could make you cry.
...reading takes way too much effort.
...not remembering what life is like when you're not sick.

Sunday, March 1, 2015

Finding Good in the Lyme Journey

The summer after my sophomore year I found an internship in a knitting mill.  Actually, I worked 2nd shift and was in charge of three knitting machines, but they pulled me into the front office for three days to call it an internship.

Once I got the hang of tying knots, unloading the huge rolls of fabric and having break with older ladies with self-proclaimed little understanding of birth control and more interesting stories about where they applied their hair coloring than should ever be shared, I had long periods of time on my hands. Even while working I had plenty of time to think. And think. And think.

I had been through a traumatic event the year before. All those hours, often sitting waiting for the next burst of action, I had time to process what I could not in earlier emotional months. Times to recognize that the daily schedule of an 8 hour job was good. Working with my hands - cathartic. Time to just be, and think, and heal.

It was a life lesson I never forgot.

Birdie has lot of time on her own hands now with very little social interaction. On days she is able, she busily types away. I'm not really sure how much she is processing her own journey. She firmly declared she does.not.journal. That's for mom. She's a writer. She constantly has stories evolving in her mind. I think they keep her mind off daily struggles. I pray they do. I really think time of processing this journey is in the future. And yet.

Birdie doesn't focus too much on the what ifs. She told me that she only has one choice - to grow and become a better person from this illness, because the opposite choice is just not acceptable to her. She will not become bitter and regretful.

A wise mom who has travelled this road before me recently shared,
We learned to shift quickly and often seamlessly between the really awful days and experiences and those that were not half-bad and sometimes even offered glimmers of improvement.  We learned not to hold on to any of it, just move through it - bear the bad and CELEBRATE the better - infusing humor where we could.  We look back now and see so much growth and so many wonderful moments that drew us closer and made us stronger.
My prayer for our family when they were just tots was that God would tie us together with strong bonds of love. I am seeing that prayer fulfilled.

I am beyond thankful for a dad that ALWAYS made me laugh in the hard situations. Whether I was mad, crushed, or sick he'd have me laughing within minutes. That gift is truly priceless.

My sense of humor in no way equals his, but at some point, even on our worst days, I can draw a smile.

And in those moments, we are good.

Friday, February 27, 2015

So How Was Your Exciting Weekend?

Was just asked by a person who fully knows our situation, "So what exciting has been going on?" Anything exciting in your neighborhood or did you do anything this weekend?

Well - I took care of Birdie.

That's what we do.

I cooked meals. Took a nap. Made more meals. Gave her a bath. Did the 2 hour bedtime routine.

Was it exciting?

The long nap Saturday afternoon nap sure was.

Wednesday, January 22, 2014

The Year of the Couch Is Over

On New Year's Day, 2013, I was praying for a fresh start.  I wanted to wake up and find life to be bright and full of hope.  For things to be easier.  I quickly realized (see this post) that the difficult things in life aren't simply removed by a new date on the calendar.  In fact, sometimes when you think you're at the end of your rope you don't realize how long you'll actually be stuck there clinging.

Yet in this first month of 2014, I feel like I have turned a corner.  The darkness has been overcome.  2013 - my personal year of sitting on the couch has come to a close.  It is time to get up and start living again.

Ahhhh...hear me taking deep, joyful breaths.

Monday, April 29, 2013

Day 6 of this Crazy Diet

Ok - so this is hard.  

Why wonder Birdie hates the diet, the nutritionist and probably me at this point.  I'm hungry - yet not.  I'm irritable.  My head doesn't hurt per say but I feel like there is a vice from temple to temple.

And brain fog - let's just say, "Brain, what brain?"

Day 6, it got bad for me yesterday.  Birdie day 2.  Wonder how many more days until somebody feels fabulous.  How about just no more stomach aches for Birdie?

She woke up in severe pain this morning.  It hurt to stand up.  She's back in bed after her protoniz, carafate, benzyl cocktail.  She should sleep away the worst of it.  It's actually time to check in and see if she feels up to 8th period.  I did put a little cinnamon on her sweet potatoes last night.  She needed the carbs and she detests them.  Who knows if it was that or the pear/mango smoothie?

Stomach Pain

Birdie has been struggling for months.

Her stomach started hurting January 5th and hasn't let up yet.  Some moments have been awful.  Some have been hopeful.  At this point - it's just been long.  And frustrating.  Can you imagine how frustrating it is when your child is balled up in pain and the best thing you can do for her is sit beside her and hold her hand?

Let me be clear - that pretty much stinks as a health care plan.

I have learned more about the digestive track and heard how much is unknown about the digestive track than I ever thought I would.  And I'm also really sure I've barely cracked the book on this learning curve. Birdie is in that lucky group that all her tests come back normal. Except for a low white blood count (that no on ever worries about) and a major weight loss for someone so slim to begin with. Birdie's GI specialist at Children's has told us many times that 90% of stomach pain is never diagnosed. As in they don't know exactly why a stomach hurts so bad.  They just know it hurts.  The good news is they believe you that it hurts.  So they give you an acid reducer, Myralax, tell you to get up at a normal time, exercise, do fun things, go to school.

Ummm, did anyone listen to how bad this is?

She has pain 10 minutes after eating.  You can see her double over in pain as the food gets to her stomach. She is pale and listless - whether from the ongoing pain or what. She isn't herself. Her brothers keep asking me if I've noticed how pale she looks - like I could miss it. Mornings are awful.  She wakes in pain. It takes a while for that to ease. Nights from half and hour to an hour after dinner are awful. She wakes several times a night in pain. All that pain causes her to avoid eating, which leads to the weight loss. The doctor says she's constipated.  She goes everyday, but he always feels poop in her colon. When you have trouble eating and getting food in, it really messes up poop coming out. Her endoscopy showed beautiful tissue, but also found food in her stomach and small intestine.  She had eaten over 12 hours before. That led to an initial diagnosis of gastroparesis. The thought at that time in February was that it was caused by a virus and would eventually heal (although I kept reminding everyone that she was on a high dose antibiotic when this started). At that time she was starting to improve a small amount.

Further testing a few weeks later showed a perfect gallbladder on ultrasound and good motility with a barium x-ray series. Liquid flowed through the stomach and small intestine quickly and did not show any Chrons. Yet why all the pain??? At that point the doctor spoke of putting a feeding tube down Birdie's nose if she didn't start gaining weight.

Birdie currently has four medicines in her arsenal.  I must give them some credit. Periactin has been the life saver.  It has increased her hunger - imperative for her to regain the weight she loss. It helps block pain receptors between the gut and brain. This further enables her to eat.  It also makes her sleepy.  What a gift it is for her to sleep through the night without waking from pain.  Doesn't always work, but this is a great pill in my book.

However, even with these medicines, she still has daily constant pain and episodes of severe pain.  She can't even think about making it through a school day.  She's on homebound instruction and sometimes barely makes it through one of those sessions.  At this point her eighth grade year is slipping by as she tries to sleep through it.  She really wants to be back at school with friends again.  She wants to feel like talking to other kids and that she has the energy to walk from class to class.

Yet we're not getting there this way.

So I finally went to plan B.  Or maybe I should just call it step 2, because I think the solution to her problems will be a combined effort.

I called a holistic nutritionist.

And that is several posts in itself.