Feeds:
Posts
Comments

Archive for the ‘Raising Awareness’ Category

One year ago, I posted on Digestive Tract Paralysis (DTP) for the G-PACT-sponsored DTP Awareness Week. As a treat, I’m reposting with the permission of my featured guest stars.

Unfortunately for me, a lot has changed in the last twelve months. Due to my worsening DTP, I became severely malnourished and the damage done to my GI system appears irreversible.  I had a GJ-tube inserted in December 2012 which has proven unsuccessful in treating my DTP.  The medications (that you’ll read about below) that once worked to “control” my dysmotility have since failed.  My motility specialist says I am likely to be TPN-dependent for the remainder of my life.  Furthermore, most of my medication has been transferred to intravenous (IV) form as I have severe malabsorption to anything given enterally (through the GI tract).  But yet, this has given me such an improved quality of life. I have more energy and less pain. My days aren’t spent worrying about getting in enough calories to sustain life.  And I can still do almost everything I could do before our various interventions. Actually, I can probably do more.

So, without further ado, I would open a window into life with Digestive Tract Paralysis. Thanks for reading!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I live with DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning paralysis). I also have intestinal dysmotility which has resulted in chronic intestinal psuedo-obstruction (CIP or CIPO). And that’s chronic (meaning long-term), intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

 

(more…)

Advertisements

Read Full Post »

Last week was Home Parenteral Nutrition (HPN) Awareness Week.

As many of you know, Total Parenteral Nutrition (TPN) keeps me alive. It’s called Total PN because I receive essentially all of my nutrition parenterally – through a line in my chest that goes straight to my blood (“parenteral”) rather than through my gut (“enteral”). Fourteen hours every day I am hooked up to an IV line that delivers this nutrition. The other ten hours I am hooked up to a line that delivers what is essentially sugar-water which keeps my blood pressure and blood glucose levels stable. I am very grateful for these lines.

However, there is a very real and very serious downside to requiring parenteral nutrition. Part of this downside is that a line that constantly enters your blood system, right next to the heart, where it can be pumped throughout the entire body; this line can introduce bacteria and yeast to the bloodstream causing a very serious infection called septicemia. This describes the reaction the body has to foreign bodies in the blood stream. (“Sepsis” is the same reaction but to an infection in any part of the body.) It can involve changes in temperature, heart rate, blood pressure, white blood cell (WBC) count, and respiration rate.

Septicemia has seemed to find a friend in my body. And usually when it hits, it hits hard – bordering and even reaching septic shock. It’s scary and painful. My brain feels like it’s a ferris wheel, spinning upon itself, and nothing makes sense. And because my white blood cell count – white blood cells fight infection – are low/low-normal when well and do not seem respond to infection, we have no warning. In fact, doctors have nearly discounted my fever numerous times because of a lack of WBC response only to find out my body is going full-out septic just hours later.

 

(more…)

Read Full Post »

Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

(more…)

Read Full Post »

I’ve been home for nearly two weeks now. Recovery has been slow and has sapped me of most of my excess energy so many apologies. Because there’s so much to cover – and I’m having difficulties organizing my thoughts – we’re going to go about this bullet-style.

  • I’m home. I was discharged with a four-week course of IV Vancomycin (a very powerful antibiotic) at a very high dose. Because we never got those sensitivities back (i.e. what bug we’re fighting and what antibiotic is best to fight it) and my reaction to the infection scared them (though I assure you, it did not scare nor surprise me or Keith), the doctors are playing it safe. I guess that’s what they do best. I was also on Cipro (another antibiotic), but I have finished that course.

(more…)

Read Full Post »

April is Autism Awareness Month. Although Autism has been getting good press, many still don’t realize it’s a spectrum. Language skills, social skills, and development can vary. And autism can strike anywhere, regardless of ethnicity, gender, and socio-economic status.

So I have a treat for you. One of my favorite mommies and bloggers agreed to write a “guest blog” about her experience with her daughter. You can follow her story more closely at Living Life with a Side of Autism. Thank you, Jen!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

She sat in the hallway. Alone. In a blue, plastic chair. She was told she wasn’t welcome. She couldn’t behave like that.

She was 3. Non-verbal. At school.

This was life for my daughter before we got her Autism diagnosis. She was treated like the bad kid in class, and every day I received what amounted to a verbal lashing from her teacher. There were exasperated sighs and advice on how to better discipline. I felt like a failure. I had messed up my kid. I was reminded of that each day at 11:30am, when I trudged into the school to drag out my screaming first born. Or maybe at 11:45 after she had stopped having a tantrum in the classroom because she couldn’t put on her jacket, yet had no words to ask for help. Not that it mattered. She was still the bad kid, words or not.

A lot of children are diagnosed with Autism around 2 1/2 or 3. Katie, however, wasn’t diagnosed until the month she turned 6. We went through years of evaluations and diagnosis after diagnosis, none of which really fit. First, we were told Katie had low self esteem. Then we were told it was ADHD. Then, that she was probably bi-polar. None of this explained her extreme language delay or social deficits, however. We were told everything from she just was choosing not to speak, to she just had a strong personality. No one took all of her symptoms and put them together. We were just given a different explanation for each concern we had.

Over the years, I have moved from being the mother who just sat there and nodded her head in agreement, to the mother who does her own research and fights for her child. When Katie went from preschool to Kindergarten, things really went downhill. Fast. She was having a lot of meltdowns at school, and eventually began hitting other students. I was tired of being told my child was just a discipline problem with a speech delay. I lived with her and knew there was more to it than that. I saw her rigid behavior. I saw her inability to transition and inflexibility when it came to change. I saw her not making any friends, not knowing how to play with her toys, and becoming more and more physically aggressive at home. I saw her unable to participate in childhood activities, such as dance, and soccer, and gymnastics. She would either meltdown or be off on her own. I saw how overwhelmed she became around large groups. How going to the busy store guaranteed us a meltdown. How she had severe anxiety over the smallest thing. How she had irrational fears. No, my daughter wasn’t spinning in circle or flapping her arms, but were those the only things that defined Autism?

(more…)

Read Full Post »

Once you choose hope, anything’s possible. -Christopher Reeve

Four months ago I got my muscle biopsy results. It showed severe deficiencies and came with the official diagnosis of Mitochondrial Disease. Although I had lived over a year with a “clinical diagnosis,” it had suddenly become real. Really real. I found myself at a crossroad: I could breakdown and cry; or, I could do something about it.

That night I spoke with my best friend and expressed how I felt. Less than a year earlier, she had had the same conversation with her physicians. She heard those same words: “You have mitochondrial disease.” She felt the reality come over herself. And she chose to fight back.

We spoke for a long time about what we could do. How we could change the future. How we could keep this horrible disease from consuming our every wish and dream. Our every hope.

It was on that night that the Show of Hope was first conceived.

(more…)

Read Full Post »

I’d like to introduce my good friend Matthew. Matthew is a happy 6-1/2-year-old who loves singing, dancing, and drawing. For my birthday, he drew me a beautiful card:

Matthew's Card

(more…)

Read Full Post »

Older Posts »