Rare Disease Day 2014

I am writing this post to promote “Rare Disorder Day”. There is a whole website devoted to this effort, and it is international in scope.  I’m including a link to the website below.

Lately my daughter Deanna and I have cranked up our efforts to spread the word about her two rare disorders, Dystonia and Narcolepsy.  These are only two of the 6-8,000 rare diseases identified around the world.  According to the Rare Disease Day website, a disease or disorder is considered rare in Europe when it affects fewer than 1 in 2000. In the United States, it is considered rare if it affects fewer than 200,000 Americans at any given time.

Given that most of these conditions are extremely difficult to diagnose – and most go misdiagnosed or completely undiagnosed for years – you can perhaps see the dilemma.  There is a lot of real human suffering going for a lot of people, and not a lot of time, attention, or funding being devoted to alleviating any of it.

And when I say a lot of people, I am not just talking about the actual patients.

For every individual who has one or more of these disorders, you can add at least two people who are affected by it – that person’s parents.  Speaking from experience, regardless of a patient’s age, parents and other family members are affected by this one individual’s health issues. So are their friends, classmates and co-workers (assuming the sufferer is lucky enough to be able to work and actually has a job).

So this is my attempt to raise some awareness among those who know me, or who follow me on Facebook or Twitter. I hope you will take some time to check out the Rare Disease Day website and increase your awareness, and perhaps take some time to share what you learn with others that you know.

In the coming weeks I am going to be updating my “Antipandemonium” blog to reflect a shift towards posting information exclusively related to the way in which chronic disease and rare disorders affects our lives specifically. I will also be adding links to organizations that provide support.

Paraphrasing Marlo Thomas in her appeals for St. Jude’s, give thanks for your health and the health of your friends and family, and give (your money, your time or just your attention) to those who are not.

Thank you and God bless.

http://www.rarediseaseday.org/

 

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When Narcolepsy Catches You off Guard – Guest Post by Deanna Lynne

This is another guest post by my daughter, Deanna Lynne. It is her perspective of events covered in my last post “Withdrawal”. 

It’s 10pm and I have just gotten into bed for a good night’s sleep, or so I thought.

I have Narcolepsy. By definition Narcolepsy is, “A sleep disorder involving the brain that affects 1 in every 2000 Americans. Narcolepsy occurs when the brain cannot normally regulate cycles of sleep and wake. This can cause daytime excessive daytime sleepiness that result in episodes of falling asleep suddenly.”

Narcolepsy is a little different for me.  Left unmedicated, I’m nocturnal.  My pattern was generally to be awake from 10 pm until 5am, then fall asleep at 5am, and then wake up at 7am. Sometimes I nap during the day, and sometimes I am awake for 48 hours straight.

I recall noticing my sleep issues at age 5 or 6. But as a child I had tons of energy and didn’t think about it. All a child wants is to be happy, loved, and play as much as she can.

I remember going into my parents’ room on some nights and saying “I can’t sleep”.  They would tell me things like “Just close your eyes and think happy thoughts.”  I went back to my bed and tried it but it just didn’t work for me.

So then I went to my big brother Eric and asked him if he could help me fall asleep. He would take out his sleeping bag and carefully wrap me up in it with my teddy bear Lovey Dove. I lay there on the floor of his room for what seemed like forever to me because I was so young.  I said, “Eric, I still can’t sleep.”  He whispered softly, “Shh, just close your eyes and say to yourself all you want to do is sleep.” So I did as he asked. And eventually I fell asleep.

I made many trips to my brother’s room in the middle of the night when I was young.

As I got older, the sleeping issues got worse. I remember being in 7th grade English class, falling asleep and falling right off my seat. That only happened once.  After that, sleeping in class didn’t occur again until high school. I fell asleep in English class 3 times. It wouldn’t be for the whole hour – just a couple of minutes. Good thing it happened in English class because I got good marks in English and I could afford to fall asleep.

My teacher joked with me and said, “You must be out partying a lot to sleep in class.” I answered “No I’ve just been having trouble sleeping that’s all.” It doesn’t surprise me that my teachers didn’t talk to my parents about it because falling asleep in class rarely occurred. And I was not the only high school student falling asleep in class.

I used the weekends to catch up on my sleep. I would sleep pretty much all day. In my opinion I don’t think I missed much in my teenage years. I was a terrible teenage girl. I drove my father and mother up the wall.

Sleep issues often go undiagnosed in children, especially teens, because of the stereotypes – teens are growing and they sleep a lot because of it, but it’s often chalked up to laziness or too much partying. In my own case, there was also the issue of my blood pressure.  My parents were preoccupied with that particular problem because it has caused me to be hospitalized a few times and medicated since age eleven.

Things changed in my 20’s, when I was diagnosed with Dystonia.  My doctor said I should have a sleep study.   A sleep study is an interesting experience.  You go to a sleep lab, where there are nice rooms all made up to look like a spa or hotel.  A sleep technician wires up your head, and then you spend the evening doing what you’d normally do – watch TV, read, etc.  Unfortunately for me, the cable was out on my night, so I just read a bit and then lights out.

The only unpleasant part of the study is getting the glue they use out of your hair when the study is over.

Of course I had trouble falling asleep, and when I finally did go to sleep machines measured my REM sleep.  The results were typical of someone with Narcolepsy.  Here is a description from the National Sleep Foundation.

“Sleep happens in cycles. When we fall asleep, we initially enter a light stage of sleep and then progress into increasingly deeper stages. Both light and deep sleep stages are called non-REM (rapid eye movement) sleep. After about 90 minutes, we enter the first stage of REM sleep, which is the dreaming portion of sleep, and throughout the night we alternate between stages of REM and non-REM sleep. For people with narcolepsy, sleep begins almost immediately with REM sleep and fragments of REM occur involuntarily throughout the waking hours. When you consider that during REM sleep our muscles are paralyzed and dreaming occurs, it is not surprising that narcolepsy is associated with paralysis, hallucinations, and other dream-like and dramatically debilitating symptoms.”

With the results of the sleep study showing I had Narcolepsy, the process of finding medication to control it began.  Narcolepsy is typically handled with stimulants during the day and sleep aids at night. Although we tried this therapy, it was a disaster because of my hypertension (stimulants raise blood pressure). We experimented with various drugs – most with nasty side-effects – until we can upon a combination that seemed to control my sleep, and my Dystonia, without affecting my blood pressure.

My Dystonia triggers are anxiety, stress, excitement and sleep irregularities, so controlling my sleep is important in also controlling my Dystonia.

Since late 2011 I’ve been taking a tightly regulated sleep medication. Every 27 days, my mom has to make several phone calls to get the shipment ready in time. It’s always a hassle but we have never had a problem with getting it on time until a week ago. Due to an unusual situation, I ran out. I kept telling myself everything will be okay.

Day 1, I felt fine until around mid to late afternoon. I started having Dystonia attacks. Ultimately, I only had three but each one was worse than the last. I hardly got any sleep. On Day 2 at around 9AM, I started falling asleep but kept waking up because of scary dreams.  The only dream in particular that I remember is an unearthly being touching my body parts.

I woke up breathing hard, my heart pounding, and I began crying.  Although I was still tired, I decided to get up because I was too afraid to go back to sleep. I stayed in my pajamas all day and watched TV because I didn’t want to do anything out of fear of having hallucinations, or falling asleep. The entire day I was on an emotional roller-coaster, crying one minute, laughing the next, and then doing both at the same time. I had a few Cataplexy attacks, with Narcolepsy, and woke up crying loudly because of the confusion.

Thankfully, this has never happened before and I don’t expect it to happen again. I only had to go two days without my sleep meds and once the shipment arrived and I was able to get the medication into my system, things returned to normal fairly quickly.

Some people may look at this situation and wonder how I can be comfortable being highly dependent on medications, but I look at it as similar to a condition like diabetes, where the patient has to have insulin. I am thankful that there are medications that treat my conditions and remain optimistic that better and better treatments will be developed as time goes on.

In the meantime, I continue to share my experiences with the Dystonia and Narcolepsy communities and hope it helps someone. We can all support each other and #RiseAboveDystonia.

Both Dystonia and Narcolepsy (with and without Cataplexy) are rare disorders. Many people have never heard of Dystonia, and Narcolepsy is not well understood even by people who’ve heard of it. Rare Disease Day is February 28. My Mom will be writing a post about my rare disorders and it will include links for further information. I hope you will take the time to read a bit about these conditions and help spread information to those you know.

Please look here for my Mom’s post, which is scheduled for this Sunday, February 16.

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WITHDRAWAL – When The Wheels Fall Off

I am writing this while I still feel the anger over incidents of this past two weeks. My anger is useless, and I am really trying to be rational about it, but when you are the mother of a child who is suffering (even if that child is a young adult now at age 23 – she’s still my baby) you run the emotional gamut.

Deanna has Dystonia and Narcolepsy. Narcolepsy comes with or without Cataplexy. Deanna has the kind with cataplexy. She also has hypertension, which has been controlled with medication since she was 11. Most of the time, all these conditions are well controlled and Deanna can live a fairly normal – if normal means you can’t work or drive a car.  Her life is generally quiet and isolated.

The quiet life was invaded on Tuesday and Wednesday this week by the “Specter of Withdrawal”. Yes, this event really brings up feelings of being hounded by “a haunting of disturbing image”. More on that later.

Here is the back story.

Deanna takes a highly regulated medication for Narcolepsy. It is very effective in helping with two specific symptoms of Narcolepsy – cataplexy (paralysis) and excessive daytime sleepiness.  Since Deanna has hypertension, she cannot take the drugs prescribed to fight daytime sleepiness – they are all stimulants and raise blood pressure. We reluctantly agreed to give them a try and it was an unmitigated disaster.

This sleep medication is only available from one pharmacy in the United States, and it has inviolable rules. I appreciate that. No one wants to see powerful drugs abused, least of all me.  Deanna is on a 27 day shipment cycle for this medication. I have this marked on the calendar for all my devices (laptop, iPad, iPhone); along with a reminder 7 days prior to the ship date. That reminder is my signal to call the drug company to arrange the shipment.

Most of those phone calls result in scheduling the shipment. Then I let Deanna know the shipment will be there on that date and all is well.

But sometimes, the pharmacy needs to contact the doctor for a new/updated prescription. These prescriptions are only good for short periods of time – 2-3 months. And only doctors who have an established relationship with this pharmacy’s program can prescribe this drug.

When I say tightly controlled, I am NOT kidding.  This is serious.

Deanna’s shipment should have been scheduled for this past Tuesday – so a week ago I called the drug company. And they informed me they needed to reach out to the doctor.

Me, being me, told them that’s great – but I will call the doctor too! Like many doctor’s offices, this one has one person on staff who handles nothing but Prescription orders and refills. This particular doctor is a psychiatrist so you can imagine there are a lot of prescriptions for a lot of highly regulated drugs flowing in and out of his office, so this person is important, and I rely on her.

I called the doctor’s office and left a message.  Two days later, I called the drug company again, and was told they had not heard from the doctor. I wish I could say this is not typical, but I’d be lying.

Here is where I start to get angry and hope that my brain is talking to my heart. I exercise my considerable fortitude and stay rational. It is extremely difficult because this is about my daughter. All mothers know how difficult it is to watch your child suffer.

And we were about to have major – albeit blessedly short-lived – suffering, and all because of paperwork and a confluence of events that might happen once in a Blue Moon.

I called the doctor’s office again. I spoke to the office Manager. They assured me they faxed the order to the drug company that morning. I believed them. I waited until the afternoon and called the drug company again. This time I was told that yes, they had the prescription, but the doctor’s address was missing. They could, and would, call the doctor’s office as this could be handled with a phone call – no need to have the order faxed again.

So it’s out of my hands. Now I have to try to distract myself from what I know is going on. It’s not hard to imagine if you deal with this kind of thing on a regular basis as I do. But for the uninitiated, here’s how it goes. The drug company has many such calls to make. They are not necessarily expedited. An incomplete prescription may come in on Monday and not get a call back to the doctor’s office until Wednesday.  The doctor’s office may not answer right away so another day goes by. Et cetera, et cetera, et cetera.

The failsafe is that although I call a full week in advance, the shipment of the medication is done via FedEx and can be overnighted. So I know I have until Monday to resolve this.

Ever hopeful, I called the drug company again on Friday last week.  No, they had not been able to get in touch with the doctor’s office. So I called the doctor’s office.  I called the front desk, I called the Prescription gal, and I left Voice Mail at with both.  At the end of the day, I had nothing.

Needless to say, I was not happy about having come to the weekend with the situation unresolved but what could I do.  Deanna’s last bottle of medication was running low and we were stuck.

On Monday, I called the drug company again – still no response to their repeated calls to the doctor. So I started calling again myself.

And that’s when the wheel’s fell off.  There was a new announcement when his numbered was answered.

THE ENTIRE OFFICE WAS OUT SICK WITH THE FLU!

What are the odds?

Deanna took her last dose from her last bottle of medication on Sunday night, and she wasn’t going to get a shipment on Tuesday. She might be able to manage one night without it – but two was definitely pushing it. Deanna was calm, as usual. When I asked her how she felt, she replied via text “I’ll survive”.

I called the drug company to explain the situation and tell them why the doctor’s office was non-responsive, but as I said they do not bend the rules. And as much as I hate that I also appreciate it. I know my daughter is not the only patient who is going to have issues because of an entire medical practice coming down with the flu.  The flu is particularly bad in our area this year.  As I said, what are the odds?

But there was a silver lining among the clouds. Two, as it turned out.

With the Doctor’s Office Voice Mail message, there was also an email address!  In three years being a patient at this practice, we’d never had that. So I wrote to this address immediately on Monday afternoon.  I made sure to put URGENT in the subject line.

Deanna spent a basically sleepless night Monday night and woke Tuesday with the first signs of withdrawal. Of course, I knew nothing about it until Wednesday. Deanna is a very stoic patient.  I asked her on Tuesday how she was doing – her response was “I’m OK”.

Not so much, but I’ll get to that.

Miracle # 1 – the doctor himself called me after reading my email.  Apparently he was over the flu, but he couldn’t find Deanna’s records at his office.  His staff was still out, so he asked me to call his service with the prescription details and the pharmacy phone number.  I did so immediately.

Miracle #2 – I realized he’d called me from his personal cell phone!

So now I have his email address, and his office, service and personal cell phone numbers! This only happens in the movies (see “As Good As It Gets”).

I gave it a few hours and called the pharmacy for what was to be the last time in this nightmare scenario. The confirmed the shipment was set for Wednesday. That meant Deanna had to endure one more night without her medication.

Yesterday, her texts did not indicate things were not going well.  I asked her how she was doing and she responded “I’m good. Got me medication, how are you?”

How am I?  Well, she comes by it honestly, this hiding of how she is. I’m ready to jump out of my own skin but hiding it from her to spare her. The last thing she needs is to feel responsible for my emotional state, and she would take that on because that’s who she is.

But in the afternoon, I got a call from her boyfriend, Justin. He’d been dealing with Deanna for the past two days and he informed me that she was “off the rails”.

On Tuesday, after one night without her sleep medication, she had three bad Dystonia episodes, all of which ended in cataplexy. And not the type of cataplexy where you just lose all muscle control. This was cataplexy with narcolepsy.  Total loss of muscle control and momentary sleep.

So each time this happened, Deanna regained consciousness in a state of total confusion, and started crying loudly as a result.  Deanna and Justin have a sort of system for dealing with these types of episodes, but this was particularly bad.

Additionally, she was having yet another withdrawal symptom – hallucinogenic dreams. Scary dreams. This is where the whole specter thing comes in. You want sleep, and you need sleep, but what kind of sleep quality do you have when you dreams are inhabited by unearthly beings who are messing with your private parts?

Yes, that’s right. This is what happened when Deanna tried to sleep on Monday and Tuesday night. One of the symptoms of Narcolepsy is vivid, sometimes frightening visual and audio hallucinations. Deanna has had these hallucinations, and just like the recurrence of repeated cataplexy episodes, withdrawal can bring on hallucinations.  About the only good thing you can say is she did not appear to have them when she was awake – only when she tried to sleep.

The phone call from Justin came because the situation had escalated and he felt I should know. Deanna was quite literally off the rails emotionally, bouncing from laughing to crying and back again with no control.  Anxiety, depression, elation, etc. were all wildly careening around. Better living through brain chemistry.

What could I do? She had the medication. She just had to make it to the evening  and go to bed early.  When I spoke to her, she sounded absolutely fine. She told me they were going to the bank. I asked her if she felt OK to go out (although I cringed at the prospect of her being left along even for a second) and she assured me she could handle it and was looking forward to getting out of the house for a bit.

By now, I am living everything my daughter is feeling and more because I am not with her. I must rely on what she tells me.  I must trust that it will be OK.

It is that these times when I most feel the presence of God and feel better knowing He will handle what I can’t. Man and medicine can only do so much.

This morning, Deanna is feeling much, much better. She took her first dose of medication at 10:30 PM last night, and the second dose at 1:30 AM, and then she slept until about 10:30 this morning! Trust me when I say this never happens. Sleep, even with medication, is usually difficult for Deanna. She obviously was very sleep deprived and her body needed to catch up.

There is never a good time for something like this to happen, but the timing of this particular mishap is particularly bad. Deanna and Justin are under a lot of stress. Justin graduated from college in December and is looking for a job, so far with no luck. His VA college benefits are done, and the lease on their home is up at the end of February. There is a lot to do, a short timeline, and much of the situation is beyond their control. Justin is pursuing all opportunities, in state, out of state, and overseas.

If a job doesn’t materialize soon, Deanna and Justin will be separated. Justin will go to Houston to live with his grandmother and continue the job hunt. Deanna will come to our home and stay with her Dad and me while Justin continues his job search.  Since we have two dogs, Deanna will be separated from her beloved cat, Calypso. But one of our two dogs is actually Deanna’s dog, Hollie. So I am hoping having some fun time with her dog will make up for being separated from her boyfriend and her beloved pet.

This is not the way they want it, but Justin needs to concentrate on his job search and Deanna needs to concentrate on staying well. As you can imagine, there is a lot of anxiety floating around their home these days with the future looking this way.

All I can think to say to them is “It may look awful right now, but I guarantee it will not stay this way. Things always change. Change is the one thing you can always count on. You don’t know if the change will be good or bad, but there will be change. Unfortunately, a lot of it is out of your control. The best thing to do is stay positively expectant. Opportunity comes from the strangest places.”

Fingers crossed with an eye towards heaven.

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When Dystonia Attacks! A Typical Day in My Life – Guest Post by Deanna Lynne

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My name is Deanna Lynne. I’m 23 years old. I live with my boyfriend Justin and our cat Calypso. This is the first in a series of guest posts to my Mom’s Blog. My Mom has written about my struggles with health since May 2011, when I was diagnosed with Dystonia.  My guest posts are my attempt to describe what it’s like to live with my health challenges.

I was motivated to do these posts by a woman at UNT, who suggested that my mission might be to enlighten people about my “invisible illnesses”. You see, most of the time, I look just like any other 23 year old woman. You would never know that I suffer from two rare disorders and that they prevent me from doing things that others take for granted, like driving a car.

A typical day for me starts with getting my face tickled at 6AM by my cat’s whiskers. This is her way of telling me she’s hungry. After I get up to feed her, if I’m lucky, I can go back to sleep for a while. When I finally get up, I take a shower, get dressed, have breakfast, and play Solitaire on the computer.  Justin gets up after me, and we spend 30 minutes watching a TV show as Justin eats breakfast.  Justin, who is a recent graduate of UNT (University of North Texas), then begins his job searches/job applications/application follow-ups for the rest of the morning.  

While Justin is job-hunting, I may listen to music, clean dishes, rub Justin’s back, read a book, or play with Calypso. Playing with the cat doesn’t last long – 2 or 3 minutes tops until she wants to go to sleep. Lately, I have been doing a walking indoors program by using a DVD. Last week, I walked a mile a day. This week, I’m doing two miles a day.

Sometime between noon and 1:00 PM, we have lunch. Once lunch is done, Justin will take a break to play video games for 30 minutes, and then it’s back to job-hunting, or other tasks that need to be done, but mostly job-hunting. Finding a job these days is not easy.  I will spend my afternoon talking to friends on Twitter and Facebook, or watching “You Tube” videos on make-up looks, taking notes and then trying to reproduce what I’ve seen. If I haven’t exercised in the morning, I’ll do it in the afternoon.

At 6 o’clock, Calypso comes over to me and meows, which means it’s time for dinner. I feed Calypso, and Justin prepares dinner.  Justin is a really good cook and it’s something he enjoys.  After dinner, we settle down for television until about midnight. Justin continues to do job-hunting activities while we watch. He does follow-ups on applications by email and phone, and more job-searching.

I watch a lot of television, but I honestly enjoy it – today’s shows and those from prior decades. One of my favorite old shows is “The Mary Tyler Moore Show”. I’m also a big fan of “Everybody Loves Raymond”.  New favorites are “The Vampire Diaries” and “Archer”. Justin introduced me to Archer.  I’m a TV junkie and I admit it.

As you can see, my daily life is a somewhat boring and predictable routine, but it is often interrupted by an unwelcome visitor – Dystonia.  For instance, two nights ago, while watching TV, I started shaking.  My head was hitting my shoulder, my legs were bent at the knee and kicking towards my face, my arms were flailing around, and my tongue was moving in and out of my mouth (NOT the time for a kiss). My fingers were contorted, and my abdomen and back were moving up and down.

This is a typical Dystonia episode.  

Well, it’s typical for me, Dystonia doesn’t affect everyone the same way. Most of my body parts are usually involved. If I’m lucky, my tongue stays at rest, but I’m not always that lucky. All this involuntary movement often hurts because I have no control and my muscles just do what they want, moving past a place where I am comfortable.  This is especially bad in the abdominal area.  I have strong abs but when they bend in unusual ways, it hurts.

Justin and I have learned techniques to keep these incidents from lasting longer than necessary. Justin puts his body in between my bent legs and tells me to breathe. This is hard to get control of at first because of my tongue moving in and out – but if I am persistent it works. Having a coach (Justin or my Mom) helps. I start taking deep, regular breaths, and the shaking slowly comes to a stop.

But I must continue to take deep breaths because now I’m locked up in an odd position. Justin brings me water because he knows water calms me down.  I have to sip it through a straw because my head is tilted out toward the side. Justin stays by my side until my body becomes unlocked. Then we continue from where we left with whatever we were doing, as if this rude interruption had never happened.

I don’t have nearly as many Dystonia attacks as I did when it first appeared in my life. I often had as many as 30 episodes a day back then. Now, I have about 1-2 episodes a week. If I’m lucky, a whole week may go by with no episodes at all, but that is rare. Unfortunately, there is no cure for this rare disorder, and there is no standard treatment, no miracle pill that keeps it totally under control. I always have to be prepared for the unexpected, because Dystonia attacks with no warning at all.

My illnesses prevent me from driving, so I am homebound most of the time. When Justin was a student, he was home often (even if he was busy studying). Once he finds a job, I will be alone during the day. I have found ways to keep myself occupied, and I try not to think about how lonely it may get when that happens.

I will tell you about my other illnesses in future posts. I hope you enjoyed this brief look into a day in my life with rare disorders. And I would like to say that if you have a life struggle, just tell yourself it could be worse. I always keep my head held high. I tell myself that I have my family, friends, Justin, and God that I can talk to.

 God bless and have a great week.           

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T-Shirt $25, Photo Op with Arielle Kebbel $40, Kiss on the Cheek from Ian Somerhalder – PRICELESS!

Last year, when Creation Entertainment announced that they would be having a Vampire Diaries Fan Convention in Dallas on the weekend of August 17-18, I knew that this would be my daughter’s birthday present for 2013.

As those who have read my blog are aware, the past two+ years have been difficult for Deanna. I chronicled the past 2+ years of her struggle on my blog – links to those posts are available at the end of this one, for those interested in the details. I wanted to do something special for her birthday after her long struggle with her health.

Long story short, she has chronic hypertension, Dystonia and Narcolepsy w/Cataplexy. The hypertension is invisible and 99.9% controlled. The Dystonia and Cataplexy are only visible when she gets anxious or excited.

Meeting the actors who play roles in one of her favorite TV shows is unquestionably exciting, so I expected Dystonia and Cataplexy to show up at the convention. Since they are rare disorders, most people have no idea what they are looking at when they make an appearance. They were in full view at the TVD Convention.

I am sure that most people witnessing Deanna in the full throes of a Dystonia episode or Cataplexy attack have no idea what they are looking at. Dystonia causes the muscles in her arms and legs (and sometimes her neck and tongue) to flail around wildly. Cataplexy is total, temporary paralysis. Both can last a few seconds to several minutes. The after-effects of a Dystonia episode can leave Deanna “locked up” (unable to use her arms and hands and unable to speak).

But nothing stops Deanna from enjoying her experiences. Nothing.

The week before the convention, we were having lunch at Panda Express, and she got a fortune cookie that read “A THRILLING TIME IS IN YOUR IMMEDIATE FUTURE”.

This turned out to be quite an understatement.

A few days later, Paul Wesley canceled due to filming obligations. We lost Michael Trevino two days after that. The good news is other stars were kind enough to step in and fill the gap. My daughter is a big Paul Wesley fan, but I knew in my heart by the end of the convention, she would have had the best birthday of her life.

The excitement started on Friday. When I arrived at her home to pick her up, her boyfriend answered the door and said “She just had a Cataplexy attack”.  Deanna was sprawled out on a chair, completely paralyzed, eyes wide open, unable to speak.  We’ve been here before, so I just waited until she regained control of her voice and her body, and we loaded her suitcase into my car and off we went.

We arrived at the hotel and went to stand in line to register, hoping to meet up with some “Twitter Friends” who we would meet for the first time at the convention, one of which actually lives only about 20 miles away. I had happily been anticipating this for months and scanned the crowds as we waited in line.

There are two people I’ve been Twitter friends with practically since The Vampire Diaries began, Mak and Ruthie – better known in the Twitterverse as @mak75231 and @tvdfansonline.

I recognized Mak right away – from her short, spiky blonde hair and t-shirt.  Her Twitter handle emblazoned across the back, the front reads “Editor in Chief, Mystic Falls Messenger”. Mak writes the recaps for Ruthie’s site – http://vampirediariesonline.com/  and they are awesome.  Bonnie and Mak

About half an hour later, I spotted Ruthie, in Dallas with her Sister-in-Law and niece. Greetings were exchanged, introductions were made, and I was pleased knowing we’d be spending the weekend together, even if we weren’t seated together in the theater. Deanna, Ruthie and Me

The lines at fan conventions are long – registration lines, autograph lines, photo ops lines. This, plus the anticipation of seeing the stars and getting photos, caused the first of many Dystonia episodes, and one Cataplexy episode. Waiting on the registration line, episode # 1 kicked off. We had no choice but to ride it out standing up. Fortunately, it didn’t last very long (maybe a minute) and Deanna seemed fine, as she usually does.

One of the perks of arriving the evening before the convention officially starts is getting the registration process over with and having time to explore the vendor room.  Due to the cancellations, there were tickets to exchange, and more lines to stand on, but Creation has the process well organized to be as painless as possible.

In the vendor room, the first thing I noticed was “BOB”. For those who don’t know, Bob Somerhalder is Ian’s older brother and BOB stands for “Built of Barnwood”, a Somerhalder family business.  Check it out here: http://www.builtofbarnwood.com/

Charm runs deep in the Somerhalder family. I recognized Bob right away and walked up to him to ask about my order for a “Never Never Give Up” bracelet.  I had ordered it in May and still hadn’t received it. Not a problem for me really – I understand how the business works. I was happy to wait – but Bob pulled a bracelet from his stock and handed it to me. I told him it wasn’t necessary but he insisted. I happily gave him my name, address and email so they could stop my original order if it hadn’t shipped.

The business of the evening concluded, we ate dinner and bedded down anticipating a full day on Saturday.

Following breakfast, we checked out the vendor room again, where I asked Bob if I could get a picture of him with Deanna, and he graciously obliged. One Somerhalder brother down – one to go!  We took a quick check of the other vendors, and Deanna picked up a t-shirt.  Deanna and Bob

Cell phone in hand (two actually), I started checking Twitter for signs of another fan with whom I connected on Thursday evening. On Wednesday, I just happened to mention my plans for the weekend to my hair stylist.  She passed it along to another client. On Thursday evening, while watching TVD, I got a Tweet from Rachel (@RachAnne98), who I did not know.  I asked her if she were attending the convention, and she said yes!

So when we entered the theater where all the action takes place, I checked my Twitter for Rachel. We connected in person and discovered we live in the same town! Turns out we have so much in common – more on that later.   It’s a very small world.

We wound up sitting next to two very lovely young women, @RN_2B2012 (who is, in fact, an RN, which was wonderful because she had an understanding of Deanna’s issues) and @Krystn_RT. You meet the nicest people at the events, and there is instant rapport because of your common interests. It was great sharing the theater and lines with them and Deanna and I were happy to pick up two new Twitter friends.

The entire weekend was emceed by the lovely Hindy sisters of @HillywoodShow – Hilly (@HillyHindi)and Hannah (@HannahHindy), dressed as Caroline Forbes and Katherine Pierce.

The first panel was Todd Williams and Charlie Bewley. While quite gorgeous to look at (TVD is a CW show and I think gorgeous is a casting requisite!) they were both also very entertaining, spending a lot of time on how it is working with Ian Somerhalder and drifting off to Joseph Morgan (which eventually ended up with Todd describing it as “JoMoSmolderholder” or something like that). It was quite amusing.

At the end of their panel, Charlie auctioned off a private dinner with him at his hotel that evening, proceeds going to his project for Veterans suffering from PTSD. The winning price? $3,000.  Whee!

To support Charlie and the project, click the link below.

http://www.kickstarter.com/projects/1980006892/thunder-road-feature-film

Next up was Arielle Kebbel, a beautiful young actress with an ebullient personality. Her character, Lexi, was an instant hit on TVD and since this is a supernatural show, getting killed off doesn’t mean you can’t reappear!  I know I am not the only one who looks forward to seeing her pop up on TVD, hosting the TVD Rehash, and lately hosting Perfect Score.

Since Deanna had a Dystonia episode in her seat in the morning, at the conclusion of Arielle’s panel, we skipped the Trivia Contest, Music Video Mix and Costume Competition to fuel up on lunch and hydrate. Dystonia and Cataplexy tend to appear when Deanna gets off her schedule and doesn’t get enough food and water. It’s boring to eat and drink regularly, but it’s a necessity when you have chronic health issues.

Next up was Dave Alpay. He was introduced by none other than Steven R. McQueen, panel crasher. Dave seemed amused and everyone went with it. Of course, we all had a wonderful time. Dave teased that we perhaps haven’t seen the last of Professor Shane.

The first of our limited photo ops came next, with Arielle. Waiting on line was proving to be quite a challenge, and Deanna had another Dystonia episode. Fortunately, Creation has things so well figured out that the lines move quickly once they get going. But I was already wondering how we would make it through the rest of the afternoon and into the late evening Cocktail Party.  Arielle

The final afternoon panel was Steven and Zach Roerig, and their party was crashed by Arielle. Hilarity ensued. When Deanna is really enjoying herself, she gets what her boyfriend calls “that big open mouthed smile”. That smile was on her face for this entire panel. She was completely enjoying herself, and so was I.

But I was concerned about the long haul so I decided to go the hotel front desk and ask for a wheelchair.  At least this way, if Deanna had a Dystonia or Cataplexy episode, she’d be sitting down. So my 23 year old daughter spent most of the rest of the convention in a wheelchair and was pushed everywhere by her 60 year old mother – the irony!

Turns out, that was one of the best decisions I made all weekend.  While waiting on line for a photo op with Steven and Zach, Deanna had a Cataplexy episode.  All I could do was hold her head to keep it from falling all the way back. Thankfully, by the time we made it up to the front of the line, she was fine and we got our picture! Steven and Zach

And while waiting on line, I could not resist initiating a conversation with Gary Berman, one of the owners of Creation and our Auctioneer for the weekend.  I recognized his New York accent and just had to speak to a fellow New Yorker. He is a very nice guy and genuinely cares that all convention attendees have a wonderful time.

Next up were autographs with Zach and Todd on one side of the theater and Steven and Charlie on the other. Once again, Dystonia made an appearance, this time locking up Deanna’s arms and hands, making it impossible for her to hand her pictures to the stars. So I did that for both of us. Zach Roerig noticed her condition and kindly asked what was wrong. I gave him the 15 second Dystonia explanation and he was sweet and gracious.

Once through both lines, we went out to the registration area, and I left Deanna in the middle of the room to go and pick up our pictures. I noticed a group of people congregating near Dave Alpay, who had likely just come from his Photo Op/Autograph session, and I scooted around them to the picture table.

When I turned around, here was Deanna at the front of this crowd and Dave Alpay was kneeling in front of her in the wheelchair!  Turns out two women saw her and just pushed her up front to meet him. I walked up and said “Hi. Remember when you tweeted last week who’s going to be in Dallas and I answered me and my daughter and it’s her birthday? Well, here we are.”

I had been told by another Twitter friend (@TriniJax) that Dave Alpay is a very interesting fellow. I would add kind, generous and extremely good looking up close and personal. I would have loved to have more time with him. The same two women took a picture of all three of us. This was definitely a highlight of the weekend. I never did get the names of these kind ladies but I do thank them both. David Alpay

At dinner, we discussed the evening ahead and decided to err on the side of caution and skip the Cocktail Party/Masquerade Ball.  It was scheduled for 10:45 PM and we had “costumes” and masks and I had a centerpiece for the contest, but I knew it would be a very late evening and Deanna and I were both feeling worn out. Attending would be a risk and although it was billed as “the most celebrity filled TVD Founder’s Day Saturday Party EVER!” I felt we needed sleep.

Another good decision!

Sunday morning we didn’t exactly bounce out of bed, then choked down a quick breakfast and went to the theater for the first panel with Ian Somerhalder.

There are celebrities, and then there is Ian Somerhalder. God and nature were very generous to Ian. He is stunningly good looking. But he is also a wonderful human being. I believe he is an “old soul” – one of those special people wise beyond his years. He is a devoted environmental and animal activist, and I have always thought his vision of harnessing and mobilizing youth is brilliant. He spent a good part of this panel speaking about causes dear to his mission. He is inspirational.

After Ian’s first panel, we were treated to the Hillywood Show parody of TVD.   If you have not seen it on YouTube – where have you been?  Go to You Tube or www.TheHillywood-Show.com right now and check it out.

Next, we got on line for our next photo op.  The Creation volunteers put Deanna and another woman, also in a wheelchair, at the head of the line.  I was not expecting this kind of red carpet treatment at all.  I was so grateful for the wheelchair I would have happily waiting on line for hours.

However, as we waited for the stars, Deanna had yet another Dystonia episode.  This one was particularly bad, but thankfully did not result in locking her up.  When they called us for the photo (first in line!) she was fine.

This was supposed to be the “Ian and Paul sandwich” but had turned into Ian and Kat Graham. I had worried that Deanna would be very disappointed but she was thrilled to be standing between “Bonnie” and “Damon”. As for me, I was prepared to give it all up for Deanna, but the very gracious Kat Graham (who is absolutely gorgeous, by the way) whispered to me “Why don’t you go and stand with Ian”. You did not need to say that to me twice!

The smile on Deanna’s face in this picture says it all.  Ian and Kat

Once we had the shot, I said to Ian “check out the shirt”.  Deanna was wearing a shirt with special artwork done for Paws4ACause a few years ago. Ian recognized it right away and gave Deanna a high five!

Leaving the room on a high, we went to have a light lunch.  I was delighted to find Rachel sitting there and asked if we could join her.  We had a wonderful conversation and found we have many things in common – including tracking our meals on My Fitness Pal and scheduling meals and activities with alarms on our cell phones! We made plans to get a picture together before the end of the day.

Following lunch, Kat Graham shared a Q&A panel with Torrey DeVitto.  One thing that surprised me was how much more beautiful all the female actors are in person.  As I said, I think this is a casting requirement for CW shows but honestly, these ladies glow!

The highlight of the convention was, of course, the Q&A panel with Ian. I don’t know what else I can say about him. He has a legion of devoted fans and I am happy to be one of them.  It’s quite fascinating to me that kids whose age is still in the single digits love Ian as much as I do at age 60. That says quite a lot about his broad appeal.

We had one more Photo Op with Torrey DeVitto. I could not resist telling her how much prettier she is in person than she is on the screen – and I hope it didn’t sound like a left-handed compliment. I was simply bowled over by how lovely she is.   img054

The last event on the agenda was autographs with Ian, Kat and Micah. Once again, Deanna experienced a Dystonia attack while waiting on Ian’s line, and she was locked up and unable to speak when we got to him.  He wanted to give her another high five, but I told him that would be impossible.

So he got out of his sear, climbed up over the autograph table, and planted a kiss on Deanna’s cheek!

I nearly cried. The folks waiting on line behind us – who were kind enough to let us cut in front of them due to Deanna’s wheelchair – let out a collective “awwwww”.  It was the highlight of the whole convention for both of us.

After collecting autographs from Kat Graham and Micah Parker, it was time to call it a day. I made a special effort to thank Gary Berman and gave him a big hug. He and his team of staff and volunteers certainly know what they are doing and they made things so much easier for Deanna that I will always be a supporter of Creation Entertainment.

We skipped the final panel with Trent ford and Micah Parker as by now my girl was clearly exhausted and running on fumes – and her mama was too!

We never did get our picture with Rachel but I see a coffee at the local Starbucks in our future! A new friendship was born and it all started with a mutual love for The Vampire Diaries and Rachel reaching out to me on Twitter. I am so grateful for that.

To anyone reading this that hasn’t had the opportunity to attend a fan convention, I highly recommend it. Life is about making memories, and this is a great way to do it. We made some new friends, met some old ones, and can look forward to the return of The Vampire Diaries on October 3 with new Followers on Twitter who share our love for the show.

(Previous posts on living with Dystonia and Narcolepsy/Cataplexy):

http://antipandemonium.com/2011/05/14/being-an-ordinary-parent-to-an-extraordinary-child/

http://antipandemonium.com/2011/08/19/happy-21st-birthday-to-my-extraordinary-daughter/

http://antipandemonium.com/2012/09/23/coping-with-rare-and-chronic-diseases-part-1-of-2/

Posted in General, Uncategorized | 2 Comments

Coping with Rare and Chronic Diseases – Part 2 of 2

I am grateful to have a daughter her handles her challenges with strength and grace, because I’ve had my own challenges with health during the past year. 

Around the time that Deanna was being diagnosed with Dystonia, I noticed a pain in the index finger on my left hand.  When I had the time to take a closer look, I saw that it was definitely swollen.  I went to my doctor, and a set of x-rays later, I got a diagnosis of Rheumatoid Arthritis and a referral to a Rheumatologist.

If you are referred to a Rheumatologist, be prepared for a long wait for that initial appointment.  It is nearly impossible to get in for at least 6 – 8 weeks after initial contact.  Once you get there, you are blessed if you find a physician on the other end that you like and trust.  I was blessed.

RA is an auto-immune disorder.  There is no cure. 

RA is the biggest challenge I have ever encountered.  I had no idea what I was facing when I complained about the pain in my “fat finger” and the knuckles in my right pinkie, and the ball of my right foot.  Within weeks of first noticing the pain and swelling, and before I found effective treatment (which took months), I was not only dealing with unrelenting pain, but the other symptoms of RA – incredible fatigue and total loss of appetite.

Some of you may think “loss of appetite?  Where do I sign up?”  I get that.  Unfortunately, when you combine loss of appetite with chronic fatigue, the expression “life’s a drag” becomes a reality.  You literally have to drag yourself – physically and mentally – into action.   No food equals no fuel to move your body or engage your brain.  I forced myself to eat every 3 hours to keep my body and my mind working, often at minimum levels. 

Well, for me they were minimum levels.  I have always been blessed with high energy and a sharp mind.  I’ve always been able to count on having plenty of “get up and go” to carry me through whatever I need to get done. 

Now I find that even when I am careful to make sure I’ve ingested fuel, my energy “got up and went” as they say.   

I have a weighted vest that I often use when I walk on my treadmill at home.  When the fatigue of RA strikes, I generally feel as if I am walking around wearing that weighted vest.  Everything requires more effort than “normal”.

I have a full-time career.  It is often demanding.  There are schedules to manage and deadlines to meet and tasks that must be done.  There is no time for a “time-out”.  Additionally, my daughter has a “team” of medical professionals that need to see her regularly.  During the past year, she’s had at least one doctor’s appointment every month.  Now that might not sound like a big deal, but Deanna can’t drive – so guess who gets to do the fetch and carry?

On days when we see her doctors, I drive 25 miles to her home (she recently moved, so now it’s 35 miles!), then up to 50 miles (to the most important and most frequently seen doctor – who also happens to be farthest from her home!), and then back 50 miles to her house – and then back 35 miles to my house (shorter if I go to work from a morning of fetch and carry!).

This would be a challenge on any day.  Lucky for me, driving is not an issue.  And of course I would do anything for my daughter.

But I am nearly 60 years old.  This routine – carried out under the devastating fatigue of RA – just about sucked the life out of me while I was going through the process of finding an effective treatment.  Even with treatment, fatigue and loss of appetite pop up here and there.  That’s just the nature of RA. 

Auto-immune – it’s a bitch.

Until I found relief, I lived with daily pain.  I could not escape it.  The worst was in my foot.  I have to walk, after all, and getting out of bed in the morning and putting my foot on the floor and standing up was so excruciating it brought me to tears on several occasions.  I am not a crier. 

The pain also made the one physical activity I could count on – yoga – much more difficult.  I did not give up, but working on modifications for some of the poses was a big challenge.  Now that the pain is under control, I am simply dealing with lack of energy.  I no longer look forward to yoga – I do it despite how I feel.  I intend to keep doing it – but it requires commitment and discipline and resolve.  It is no longer a joy – and this makes me sad.

Treatment for RA involves drugs with a lot of warnings.  Reading the warning labels is a sobering experience.  The conversation in my head when I first did it was something like “Pain relief?  Sure – would you like a little cancer on the side?” and “Pain?  We can take care of that, but you may vomit a little.”  The first line of defense, methotrexate, was one of the original drugs used in chemotherapy.  Along with my methotrexate prescription, my Rheumatologist gave me a prescription for extra folic acid – so my hair wouldn’t fall out!

Joy!

Here’s the list of common side effects of methotrexate:  Dizziness; drowsiness; general body discomfort; headache; loss of appetite; mild hair loss; mild sore throat; mild stomach pain; nausea; tiredness.

Warnings and precautions for Enbrel include “serious infections, tuberculosis, invasive Fungal Infections, Neurologic Events, Lymphomas, Leukemia, non-lymphoma skin cancer, melanoma”, 

And mind you, this is not a complete list of side effects!  The most serious side effect is liver damage – as in cirrhosis or fibrosis.  You WILL take a blood test at every office visit if you take methotrexate – to monitor your liver function – even if you do not take the injectable form (which as yet, I do not.) 

I consider myself lucky.  I no longer have to worry about menstrual side-effects, unplanned pregnancies, nursing, etc.  There are young women who are afflicted with RA who have to be on birth-control and stop breast-feeding because this is a chemo-type drug.

Now, I ask you – would you sign up for this if you didn’t absolutely feel you had to?

The worst thing that happened when I was looking for the right treatment was having an adverse reaction to an injection on the first “biologic” I tried.  As soon as I injected the serum, the area around the injection site swelled like a balloon.  20 minutes later, I was feeling “neurological effects” and scared to death. 

The only reason I was determined to do these injections was because the first one caused such incredible relief.  The daily pain had terrible effect on my quality of life, similar to how I felt when I developed sciatica after a fall.  I did not recognize the effect this was having on me until the pain was gone.  It was as if someone had turned on a light in a dim room.  After months of running at a 4 – 5 on a scale of 1 – 10, suddenly I was hitting 9’s and 10’s.  

So despite my discomfort with all the potential side effects, the pain won out.   I took my medicine and continue to do so.   I consider myself lucky to have found an effective treatment.  I recently had a set of X-rays and compared to my baseline last year, there has been no further deterioration.  I don’t like having to take pills and give myself an injection every week, but it seems a small price to pay to avoid the crippling effects and pain of the disease.

Recently, I discovered that RA can also have an effect on vision.  Although it was disturbing, I was gratified to finally have an explanation for the loss of visual acuity I’d experienced in the past year.  All this time I’d been blaming my Lasik surgery for “wearing off”.  Now I know – part of it is RA-related. 

This is another reason to be grateful for effective treatment, and thankful that all I have to do is swallow a few pills and take a shot once a week to hold steady.  Otherwise, I’d be facing my future with the fear of becoming blind and crippled!

A word here about the practical aspects of chronic and rare illnesses – the costs.  The price of my recent x-rays was $518 – with insurance coverage.  My healthcare flexible payment account was depleted months ago, due to the demands of Deanna’s illnesses and now my own.  I am stuck with this bill but acknowledge that “at least I only have to get x-rays once a year.” 

I have always guarded my health – more than most people.  I did so to mitigate effects of what I might have inherited from birth-parents I never knew.  Without a family medical history, it is impossible to know if you are at risk for cancer, heart-disease, stroke, etc.   As one ages, it is likely these inherited tendencies will appear.  If you do not eat nutritiously and get regular exercise, you are inviting “lifestyle diseases”.

My advice is take steps while you are young to take care of your health.  I likely inherited my RA.  Deanna’s conditions came out of the clear blue sky.  Being born with a single kidney, and coming down with Dystonia and Narcolepsy – these are things that just happen.

Just a few months ago, a colleague at work was confronted with something far worse than anything my daughter or I have ever faced – a brain tumor.  To complicate matters, it was growing during her second pregnancy.  The early arrival of her second daughter in late July likely saved her life.  Two days later, she had brain surgery.  She is now facing radiation and chemotherapy.

Another acquaintance has been spending the past several months aiding and comforting his wife, who has had a relapse of leukemia.    

So while it’s been a fairly rough year for Deanna and me, we are always mindful of how lucky we are.  Our burdens are light in comparison to so many others.  There are days when that’s difficult to remember, but something always reminds us. 

Be thankful for your good health, but work to stay healthy.  If you are struggling with your weight or fitness levels, start now to overcome those issues.  Eat well, and get proper exercise.  I promise you that it will go a long way in preventing disease, and make it a whole lot easier to fight it when it eventually does show up, as it is likely to do with all of us.

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Coping with Rare and Chronic Diseases – Part 1 of 2

It’s been over a year since I’ve written a post about my daughter, Deanna.  This is not because things have been quiet.  They haven’t.  It’s been a year of quiet struggle. 

(By way of background, you can find my original posts here http://antipandemonium.com/2011/05/14/being-an-ordinary-parent-to-an-extraordinary-child/ and here http://antipandemonium.com/2011/08/19/happy-21st-birthday-to-my-extraordinary-daughter/.)

My daughter is dealing with two rare disorders for which there is no cure.  Dystonia is a movement disorder – a cousin to Parkinson’s disease.  It’s not well-known.  That makes it frustrating to deal with people who – when they witness my daughter in the throes of an episode – think she is having some sort of seizure.  The cynical among the ignorant often think she’s probably some kind of drug addict.  The more humane think the occasion calls for emergency medical intervention.

The latter was the case three weeks ago. We were finally – after a year of waiting and two denials – about to have a hearing in order to determine if my daughter is eligible for SDI (Social Security Disability Insurance).  The fact that we even had to get this far is infuriating, but at least we were there – finally.  While we waiting for her time in front of the judge, anxiety began to build.  Deanna began to have one Dystonia episode after another – and continuous tremors between episodes.  This sufficiently alarmed her attorney that he requested that I be allowed to accompany her into the hearing, both as a source of comfort and as someone who could deal with her condition, should she have an episode while testifying.

We never got that far.  The officers of the court launched their “procedures” (which I understand, even if I do not agree with them) and called an ambulance.  Three EMTs arrived and began poking and prodding while I tried to explain that this was not seizure activity.  They took some vitals, and left.  This was enough to throw the judge’s schedule off, and get the hearing postponed. 

Deanna seemed to take it in stride, but I really wanted to kick someone.  I was sure I would receive a bill for the medical service that I not only didn’t request but actively tried to avoid.  And sure enough, it arrived in the mail this week.  Yet another battle, yet another terse letter to I don’t know who yet – but there will be a letter.    

That is not the worst part.  The worst part is that we will have to do this again – but we don’t know just when yet.  The good news is that the hearing will be conducted over the phone at the attorney’s office.  I don’t think this will prevent Deanna from having anxiety badly enough to have Dystonia episodes – but I do think it will help that I can be there with her.

But, back to the journey of the past year.

One of Deanna’s disorders – Narcolepsy – is generally treated with stimulants.  Not a great idea in a patient with hypertension.  Narcolepsy is characterized by EDS – Excessive Daytime Sleepiness, and the inability to fall asleep, or stay asleep.  For all intents and purposes, Deanna’s sense of sleep is reversed.  She is nocturnal – awake at night, sleeping during the day.  Not a great thing if you’re trying to work in the real world – unless you do shift work.  Early childhood education professionals do not work the night shift!   

She ultimately lost her job because she could not function after the Dystonia first appeared – but before we got the Narcolepsy diagnosis.  Thus, the application for SDI.  Deanna will never be able to work in the field she has a passion for and is supremely gifted at.  Words cannot express how sad I am over this.  So far, she’s handling this turn of events better than I am.

When Deanna’s Narcolepsy was first diagnosed, we tried stimulants – with great trepidation.  Her blood pressure shot through the roof and we had to back off within days.  Because the stimulants were thought not to react well with her original Dystonia meds, these were also changed.  The result – vomiting and headaches all around.  Suffice it to say I spent the weekend of this experiment white knuckling it all the way.

Thus began a nearly year-long journey to find the right combination of Dystonia medications and Narcolepsy medications, all the while balancing them with the hypertension medications.  All these medications come with some less than pleasant side effects.  There’s been vomiting in her sleep, massive headaches, and a few others that I will not name here. 

But the worst has been extreme weight loss.

When Deanna began this journey, she weighed a slim 115 pounds.  Today, she weighs 95-97 on most days, making her clinically anorexic for the second time in her life.  (The first time was due to undiagnosed hypertension – which caused headaches, which led to vomiting, which caused weight loss).  While she is finally “stable” on a medication regimen, trying to regain weight is proving to be a real challenge.  She got so small that even a size 0 or 1 was too big.  She’s in a girls size 14 for now.

I believe the most difficult part of her situation is the isolation she must deal with.  When Deanna made the decision to move out of our family home, she left behind her neighborhood and friends.  At first, I don’t think she felt the sacrifice.  She was setting up house with her boyfriend, looking for a new job, getting to know a new neighborhood, and then working in a field she really loves. 

But once she became ill, she was stuck alone much of the time.  Her boyfriend is a student, so he’s in class often.  Deanna can’t drive, so it’s not like she can just hop in the car and go shopping or to a movie – or drive back to our town to visit her friends (who are also in school or working). 

On one occasion, her friends did include her in a “girl’s night out”.  It did not go all that well.  They went to a club, where the flashing lights caused Deanna to have a Dystonia episode.  Some of her friends did not know how to react to that – and I think were somewhat embarrassed to be seen with someone who looked like she was having some kind of “fit”.  This is understandable – they are young and this is not “fun”.  There has been no repeat of the girl’s night out scenario (which is fine, because “clubbing” is not really Deanna’s kind of thing anyway.)

There have been a few other occasions with Deanna’s been able to spend time with friends, but they are few and far between because of distance and schedules.  Thus, she is isolated, and this can be very depressing.  Frankly, I am amazed that she has not gone into a full blown depression.  I’m also hopeful that in her new neighborhood, she will perhaps be able to meet new friends with whom she can spend time on a regular basis – just to share a cup of coffee or an afternoon soft drink and some conversation.

Right now, Deanna is looking forward to a trip to New Braunfels with her boyfriend for “Wurstfest”, an Oktoberfest celebration.  She will visit with her boyfriend’s family, who live there, and I’m sure she will have a wonderful time.  Such trips are rare, and she really appreciates them.  The last trip was to a wedding in her boyfriend’s family – it was the first wedding Deanna’s ever attended, and she had a wonderful time.     

As difficult as it’s been, Deanna remains gracious and cheerful.  She’s been dealing with health challenges all her life, and her strength continues to amaze me – and makes being her mother much less stressful!  Both of us remain confident that there are better days ahead.

Before I close, I need to say a word about the Affordable Care Act, aka “Obamacare”.   There is nothing worse than being the parent of a sick child.  The stress can be unrelenting.  But to add to that the stress of worrying about insurance coverage and costs is criminal.  This was articulated beautifully by the young mother at the Democratic National Convention.  She – and others like her – stand in stark contrast to Ann Romney and her dressage therapy for MS.

When she made the decision to leave home, Deanna also left school, for what we thought would be a semester or two at best.  Now, we are not sure she can ever go back to school (unless it is online).  Had it not been for “Obamacare”, she would have no medical coverage.  She would have had to be removed from my medical insurance (which I have through my employer) upon losing her status as a full-time college student.  Her pre-existing condition of hypertension would have disqualified her, even without Dystonia and Narcolepsy, from any reasonably-priced medical insurance.  Even an “affordable” policy would have been out of her reach.  Any benefits she had through her job would have been lost when she was essentially fired for becoming too ill to work.

Deanna has a “team” of medical professionals.  Among them, a neurologist for the Dystonia, a nephrologist for her chronic hypertension, a specialist for Narcolepsy/Cataplexy, a psychologist, and an OB/GYN.  She has had an appointment with at least one of these doctors – often two - every month for the past year and a half.  Every visit costs money.

Deanna is also taking a variety of medications: two for her chronic hypertension, two for her Dystonia, and three for her Narcolepsy/Cataplexy.  Every one of these medications costs money.  One of her sleep medications costs $5,000 a month alone.

Fortunately, thanks to insurance coverage, we are not paying $5000 for that sleep medication.  But what about the people who need it and don’t have that kind of money? 

What about people who suffer from chronic health conditions which were NOT brought on by “lifestyle choices” who need life-saving medications every day just to stay alive or to face life with some symptom-control or pain relief?

And even if you do not yet have such a condition – and trust me, if you are lucky to live long enough, one of them is likely to visit you – or have a family member afflicted with one, you know someone who does have this kind of problem. 

I happen to be among the people who believe that lifestyle choice contributes to many chronic disorders (hypertension, diabetes, obesity, heart disease, even cancer) but there are some – as in my daughter’s case – that just show up, and for which there are no changes in lifestyle, diet or exercise patterns that will make these conditions better.  Taking “personal responsibility” for our health – for many people – is not enough. 

Even if you are not a fan of “Obamacare” (and I do not believe it is the perfect answer, but it is certainly a long-needed step in the right direction), think about those people the next time you are ready to criticize and ask yourself if you can honestly deny them care. Or expect a family to lose everything to keep a child alive. 

Next post – part 2 of Coping with Rare and Chronic Diseases.  Not Deanna’s this time – mine.

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My Husband’s Adventures with “Ben”

It’s been quite a while since I have posted here, and this post is NOT at all what I had planned for this weekend.  I have not posted anything since my daughter’s 21st birthday in August, and now there will be a flurry of posts when I had only planned one this week.

But during the past week, there has been an adventure in my husband’s life and it is simply too good not to share.

My husband is easily one of the funniest men on the planet earth.  Along with his gift for hospitality, his sense of humor is definitely one of his top traits.  If I had a dime for every time he’s reduced me (and everyone else within earshot) to a pile of side-aching, tear-streaming fits of screaming laughter, I would have retired long ago.

This episode is definitely one of his best adventures and – lucky for me – he chronicled the climax in an email to his brother.

It all started last Sunday night, just after our son – who dropped in for a few games of pool with his dad – left for the evening.  My husband went outside to grill a salmon fillet.  When he opened the hood of the grill, he was greeted by a rodent.

I had no idea what was going on.  I was watching TV and checking one of my Twitter timelines.  I hear noises outside and next thing I know my husband has appeared beside me and taps me on the arm – and it was not a gentle tap.  He had a somewhat shocked look on his face.  I asked what was wrong and he told me.  He opened the grill and there was a rat staring back at him.

Since I was on Twitter, I couldn’t help but share this rather humorous event with a Twitter friend, MaryAnn.  With her permission, I’ve reproducing our exchange below.

Bonnie:  My husband just went outside to grill some salmon – lifted the lid and was greeted by……A RAT! George Foreman, here we come!!!!!

Mak:  EEeeeeeeee!

Bonnie:  That’s what my husband said as he ran back into the house.  That part was actually funny. Thank goodness he saw it before he lit the grill – just thinking of the smell is nauseating.

Mak:  Oh, my. Too bad you didn’t get video. He’d never live it down!

Bonnie:  No video, but I heard him shriek and could not imagine what was going on. Then I couldn’t stop laughing – still haven’t stopped!

Bonnie: His other comment was “It wasn’t as big as the rats in California.” I guess not everything is bigger in Texas-thank God!

Mak: No kidding! I’ve seen rats here and they are plenty big!

Bonnie:  Maybe this was a baby – or a Texas sized mouse! My husband’s in the kitchen muttering “f– – ing rats!”. LOL!

Mak: *rolling* Oh, stop, you’re killing me!

Bonnie: When I suggested it might have been a mouse, my husband said “no, I could tell by the finger he was giving me.”

Mak:  He sounds like a real card!

Bonnie (the next morning):  He came to bed muttering “I’m going to dream about “Ben”, I just know it.”

All was quiet this week on the rat front – until last night.  What follows is his own account of what occurred after I went to bed – this is from the email he sent to his brother which he titled “Ratso-Rizzo”.

Decided to take your advice and set Rat-Trap in barbecue at 5:00pm (still light out).

Since this would be Ratso’s “last meal” I gave him “Skippy” peanut butter.

Bonnie walked in at 5:10pm and I informed her of Rat Trap while also advising her that “execution” was scheduled for 8:00pm (since that’s how long I estimated it would take Ratso to find the stuff). I also told Bonnie to keep a sharp ear out for any barbecue noise at around that time. 

With the 5 Channel TV going we heard nothing by 8:00pm. I informed Bonnie that it’s possible the governor gave Ratso a stay of execution, hence no noise.

At 9:30pm Bonnie starts preparing for bed.  I went out to check the “execution chamber”. Upon opening the lid, there he is in the trap with his ass facing me, not moving.  I immediately closed the lid and figured I’d wait an hour before his funeral.

After about 15 minutes, I decided to check on the condemned.  Upon opening the barbecue lid again, here he is loose and dazed, but out of the trap. I immediately closed the lid again, ran into kitchen and grabbed Black Flag bug killer.

Upon returning to the barbecue, here’s his head at the opening.  He’s trying to get away. I sprayed Black Flag right in his face and he went back into the barbecue making a racket (really pissed him off).

I then ran upstairs to get my Pellet Rifle. Looking inside the chamber, it appeared to be loaded and ready for action.  I ran back downstairs out to the grill, pumped the rifle up 10 times for max power, opened the grill, aimed at dazed Ratso’s head – and pulled the trigger from 4 feet away.

Yep, nothing happens!!!

I checked the chamber again and the safety and all appeared okay.  Fired again, nothing!!!

Closed the grill, ran back upstairs, put a pellet in the rifle, pumped it up 10 times, and I could feel the pressure building, so now I figure “I’m finally in business”.   

Ran back downstairs, opened the grill, aimed, and immediately fired again.  

He bounced and landed in the corner of the grill not looking too well. On closer CSI examination with my flashlight, it appeared he took one through the neck and was bleeding (thank you soooo much, you piece of s – -t, bleeding all over my grill).   

Although I blessed him (of course) I will not start internment for a few hours, or tomorrow morning just to be on the safe side.

He was pretty big (size of baby rabbit).

I will probably reset trap in case there are more, since this hit came so fast.                        

For my part, I was already in bed when all this happened – didn’t hear a thing, including the patter of little feet running up and down stairs.  But was I ever surprised when, just as I was about to doze off, the lights came on in the bedroom and my husband walks in – carrying his pellet rifle!  I pulled the covers over my head and closed my eyes.

And today, while we were shopping for groceries, we also purchased – you guessed it – a George Foreman Grill!

This evening we plan to watch either “Ben” or one of my favorite episodes of Fawlty Towers – “Basil the Rat”.

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Happy 21st Birthday to My Extraordinary Daughter

Today is my daughter’s 21st birthday.  She is not celebrating it the way we all would have liked.

It has been 3 months since I last wrote a blog post.  These months have not been uneventful.  My daughter’s journey has been down a road full of potholes and bumps.  She
continues to greet each twist and turn with good humor and good spirits.

She’s doing a whole lot better than I am.

Deanna was discharged from the hospital the day after my last blog post.  At that time, we were told it might take 6-8 weeks to get an appointment with a specialist.  We were looking for a medical professional specializing in movement disorders, a sub-specialty of neurology.

There are about 5 of these highly specialized doctors in the entire Dallas-Ft. Worth area.

While my daughter was still in the hospital, I started searching on the web for anything about this condition she is experiencing, known as Dystonia.  I found an entire organization dedicated to this “orphan disease” right here in Dallas.  It’s called “Beat Dystonia”.  Out of sheer desperation and an urgent need to speak to someone – anyone that has had or has this condition, I shot an email to the organization’s founder, Rogers Hartmann.

Her response was virtually immediate.  I was flooded with gratitude and relief.  A real, live individual who has Dystonia was communicating with me.  She was exceptionally generous in offering up help.  I asked her for the name of the best doctor in Dallas and she told me his name, and more.  I am eternally grateful to Rogers for her warmth, knowledge, persistently positive attitude, and willingness to extend herself to those suffering from this debilitating, and little-known condition.

Roger’s TED Talk is available on the web at http://www.tedxsmu.org/past-talks/rogers-hartmann-at-tedxsmu/  .  She was a guest on Oprah with Dr. Oz in March of 2009.  http://www.oprah.com/health/Dystonia-Dr-Oz-Explains-Causes-and-Symptoms.  The web site of her organization is http://www.lifewithdystonia.com/.

I am forever in her debt.  Hers was the first voice of hope I heard at the beginning of this
journey.

When I called the leading specialist to request an appointment, I was told I could have a spot on October 25.

October 25th?  5 months away?

And I thought 6-8 weeks was bad.

As I booked the appointment, the doctor’s scheduling coordinator was kind enough to give me the names of several other doctors.  As it turned out, the neurologist at the hospital my daughter had been in was able to get one of these very doctors on the phone.   They spent time reviewing the case at length.  The specialist agreed to take the case because of my daughter’s complicated medical history and her age.  She cleared a space on her schedule at her Ft. Worth office.  It was a mere two weeks after Deanna’s discharge from the hospital.

I was feeling better, if somewhat intimidated.  I’ve lived in Dallas for 9 years and I’d
never been to Forth Worth.

OK – I know this is rather pathetic, but it is true.

Now I had to take a trip to Ft. Worth in rush hour traffic (the appointment was at 8 AM) with my sick child in the car.

It was the most stressful drive I’ve made in recent memory, but we arrived on time and I didn’t get lost.

No I don’t have GPS – 9 years in Dallas and never been to Ft. Worth – does it sound like I need GPS?

I wish we’d  had had more time to spend in this interesting city but we had to get in and out and Deanna was not really up to sight-seeing.  We got a definitive diagnosis and a referral to another specialist.  We were able to get an appointment with him within the week.

Another miracle.  Few medical professionals have experience with Deanna’s particular form of Dystonia.  One of them is in Dallas.  Luck was on our side again.

The new specialist strongly suspected a sleep disorder.  This made a lot of sense to me.  Deanna has long had difficulty sleeping, and the Dystonia presented itself within weeks of her returning to work full-time after being out for several months.  The new schedule forced her to rise and shine for work each day whether she’d slept well – or at all – or not.

It all caught up with her within just three weeks.

So off we went for a sleep study.  This was at the end of June.

Then began the waiting game.  We did not hear from the doctor who ordered the sleep study for weeks.

However, Deanna’s condition appeared to stabilize, and her employer called and asked if she could come in on a part-time basis.  She got medical clearance for that and started working part-time again in July.  It wasn’t long before her employer wanted her back full-time, and since the episodes of Dystonia appeared to be under control, she was given clearance to go back to work for 8 hours.

I had my doubts.  I just didn’t think this was going to work.

It took less than two weeks for her to relapse.  In that time, I was finally able to get in touch with the specialist who’d ordered the sleep study and we went to see him.

He diagnosed her with a sleeping disorder that exists on the narcolepsy continuum, and set out new instructions and all new medications.

I was terrified.

All new medications, many of them, and the ever-present worry of how any of them might react with the medications for her chronic hypertension – would there be side-effects and how bad would they be?  But I filled the prescriptions, took her to her nephrologist for a follow-up, and updated her neurologist with the latest information.

During all this, we celebrated our daughter’s 21st birthday early, while she was staying with us for her scheduled doctor visits.

I asked her what kind of meal she wanted and what kind of cake.  She’s always loved Italian food and she was quick to ask for ravioli. She then gave me specifications for her birthday cake – vanilla cake, vanilla whipped frosting, and pink flowers. A small cake, because she and her boyfriend have a small refrigerator and don’t have room for a lot of leftovers, especially frivolous things like cake.

Again, my darling daughter amazed me with her unselfish nature.  Her preferred cake is chocolate, with chocolate frosting.  We both love that.  But because she knows that her Dad
and brother don’t care for that, and because she didn’t know if her brother’s girlfriend liked chocolate or vanilla, she chose to go with something that everyone would enjoy, even if it wasn’t her favorite.

I got a cake adorned with flowers and ribbons in multiple shades of pink – her favorite color.  It was absolutely beautiful when I went to pick it up – fitting for a special
birthday for a special girl.

Another miracle – when I went through the checkout line, I swiped my “rewards” card and the cake was free!

When things go wrong, they go wrong, but sometimes they go right just when you need it.

We celebrated her birthday, she loved her gifts (a camera for an upcoming trip – assuming she is well enough to make it  – with extra storage so she can take lots and lots of pictures) and we enjoyed some lovely family time.  We were joined by our son and his girlfriend, who were meeting Deanna’s boyfriend for the first time.  I am nominating him for sainthood.  He has been a rock through Deanna’s illness.  I attribute much of Deanna’s ability to weather all this calmly and cheerfully to the support she gets from this
wonderful young man.  His strength and tenderness are evident when they are together.

Two days later, she started her new medication routine.  I slept an hour the night before.  We started with the evening meds.  When she woke up the next day after a wonderful sleep (the good news), she had a splitting headache (the bad news) – a side effect of two of the new medications. She pressed on with the new daytime medication.

As I had feared, she could not tolerate it.  Her blood pressure quickly elevated, but so did her pulse.  I called the nephrologist, who told me I’d better call the 2nd specialist and
tell him she can’t tolerate this medication.

When I spoke to him and told him what had happened, he agreed and told her to stop taking it. When I told him about the headache, which persisted into day two, he told me to back off the night-time meds as well.

So she went back to her original Parkinsonian medication.  I was hoping that within a
few days, her relapse would be under control and the episodes would be few and minor.  This appears to be the case – except she has had a headache for 3 days.

And she has lost her job.

She can’t sustain full-time employment and the school where she was working doesn’t have anything for her on a part-time basis at this point in time.

This is probably an odd sort of blessing.  Clearly, resolving the sleep disorder, which will ultimately resolve the Dystonia, is going to be a process.  It will be complicated by her existing chronic hypertension.  This is not a great time to try to work – especially as a teacher in a pre-school.  As much as she loves it, this is a job that requires a great deal of energy from my daughter.  She just doesn’t have it at the present time.

So, in addition to waiting for the next new medication and follow-up visits with all her doctors, we are about to experience the process of applying for some kind of disability benefits, because her savings have run out.

Being the mother of a sick child involves a certain amount of stress.  I am prepared to deal with that.

What I was not prepared for was an illness of my own.

When Deanna was released from the hospital in May and we’d seen her specialists and had a game plan, I suddenly had time to notice a pain in my left hand.  Upon closer examination, I found it was localized to my index finger.  I went to see my own doctor.  She did some blood tests and an x-ray and gave me some meds for arthritis.  When the medications proved ineffective (and came with some terrible side-effects) she referred me to a Rheumatologist.

The first available appointment was two months away.  Sooner if there was a cancellation.

Suddenly, all the medical professionals I needed to communicate with in my life were specialists in such lofty fields that getting in (as a new patient) to see them is an exercise in patience.

Patience is not my strong suit.  I got “F” in patience.  At this point, there is no choice, so I am learning to be patient.

I do not like it one bit.

As I waited for an appointment with the Rheumatologist, the swelling and pain spread to my right shoulder, right pinkie knuckle and right foot.  When I did have my initial doctor visit, I got more blood tests, more x-rays and a steroid shot, which helped everything
except my finger.

On my follow-up (this week), I got the official diagnosis.  Rheumatoid arthritis.   RA is an auto-immune disorder and can have the effect of sucking out all your energy and leaving you with virtually no appetite.  That is what it has been doing to me, just when I need my energy the most.

Energy is something I’ve always had plenty of.  It is the height of irony that just when I
really need it, it evades me.

More lessons in patience.

Trying to be an effective mother to my ill child – who no longer lives at home and does not drive – is now made more complicated by my own infirmities.  Hopefully, when I begin
my medication, I won’t have any of the side-effects and will feel better soon.

As I said, Deanna is doing better than I am.  Although she sounds tired, she is her usual sweet, cheerful self.

She was born a happy baby, and she continues to be a happy young woman, despite all her challenges.

Today is Deanna’s 21st birthday, but 21 years ago, I got the gift.  Deanna is the gift that keeps on giving.

Happy Birthday Deanna.  I love you and I am so proud of you.

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Being an Ordinary Parent to an Extraordinary Child

Last week’s post was a tribute to the wonderful woman who was my Mother.  This week, I am writing about my own experience as a mother to the wonderful woman who is my daughter.  This is a long post so I hope you will indulge me.

I am writing this in a hospital room.  Deanna has been here for two days.  She’s had an MRI and an EEG and they’ve taken multiple vials of blood.  After all this, they are still not sure what is wrong.

Her symptoms point to a condition in its own right – Dystonia – but this can also be a symptom of other conditions, notably Parkinson’s.  So far, the Parkinson medication is not working, but these things take time.

An effective treatment can’t get here soon enough for me.  There is nothing worse than watching your child suffer.  I have had to watch her suffer far too much in her nearly 21 years.

A week ago this past Wednesday, Deanna was in the ER because she was experiencing what looked like a seizure.  This led me to take the next day off in order to take her to a see several physicians.

The first one was a neurologist, a new specialty to add to her entourage.  The neurologist was stumped and proceeded to order up some tests in order to determine a diagnosis.  After enduring the glacially slow authorization from the insurance company, she wasn’t able to have the MRI because she had an episode during the intake process and could not hold still.  Thus, the hospital.

The second doctor is one with which we are very familiar – Deanna’s nephrologist (kidney specialist).  My daughter was born with a single kidney.  She has chronic hypertension, for which she takes medication in order to keep it under control.  The problem she is currently experiencing is raising her blood pressure, so we wanted to make sure it wasn’t something to be concerned with.  In this case, it was a fairly routine visit.

Appointment concluded, we dropped in on my son, who works just down the street from the doctor’s office.  While visiting with him, his little sister had her worst episode up to that point – right leg shaking violently and her foot banging on the floor while her arms hinged shut and her fingers and neck contorted.  It was not easy to watch, but that was all we could do. It lasted about a minute – maybe a minute and a half.  Felt like forever.

As I drove back home, I said to her “Well, the good news is that this is not life-threatening.  If you were in danger, they would have put you in the hospital.  But I know it hurts and it is frustrating and scary not having control of your body.”

And my daughter, in her halting speech (also affected by whatever this is that she is suffering from) said to me “I am not afraid”.

My daughter has an uncommonly strong spirit, one I have always guarded.   If what I saw happening to her were happening to me, I’d be plenty scared myself.

Deanna -confronted with medical mysteries and challenges all her life – has always faced them with strength, determination, and even a sense of humor.  And a presence of mind that is often startling.

Earlier in the day, at the neurologist’s office, she had to use the bathroom.  She was having difficulty getting the words out – even though in her mind, she could “hear” herself speaking just fine.  When the words couldn’t come, she called on a skill she learned in high school – American Sign Language.  As soon as she held up her left hand and I saw her sign the letter “t”, I knew she needed something.  She later explained that in addition to being a “t” it’s also the sign for “toilet” – live and learn.

I accompanied her to the bathroom, thinking she’d need help getting her jeans – belted across hips – off and back on.  Silly me – despite her contorted fingers, she unbuckled her belt, unbuttoned her button and unzipped her zipper without any help from me.  When she was done, she put herself back together again unaided.  I was feeling rather useless.

I don’t know why.  It’s happened before.

She was 5 years old when we discovered she had a single kidney.  When she went to the pediatrician for her check-up and vaccinations for Kindergarten, a urinalysis revealed a UTI (urinary tract infection).  After a week of antibiotics, the infection persisted – so off to the hospital for tests.

About a week later, my husband called me at work and left a Voice Mail.  He’d gotten the test results.

I love my husband, but he is deliberate, methodical and detail-oriented where I am direct, blunt and concise.  I prefer the Reader’s Digest version – he always gives me “War and Peace.”  After listening to him describe, in excruciating detail, Deanna’s condition – kidney valve reflux – his final sentence shocked me to the core.

“And by the way, she’s only got one kidney.  Guess you’ll be calling me back!”

Our daughter had surgery a few months later to move the tube that transports urine from the kidney to her bladder.  Reflux is when the valve is not working correctly, allowing urine to splash back up into the kidney from the bladder.

Where most people have two kidneys, our daughter had just one, and it had been working overtime for 5 years trying to keep her system clean.   With this surgery, we thought everything was fine.  Deanna repeated Kindergarten because of developmental delays (which we attributed to her physical issues) and went on to first grade.

Then she began experiencing what sounded like migraine headaches.  So we chased migraines.  For the next four years!  Deanna began to miss school, and she although her appetite was not affected, she became clinically anorexic because often, she could not keep her food down.

But she never stopped making the attempt to attend school, and she never let her headaches prevent her from playing with her friends or doing anything a kid her age would normally do.  Even when she got Bell’s palsy in May of 2001, which paralyzed the left side of her face for three months, she continued to live the life of an average 11-year-old girl.

When she entered 5th grade in the fall of 2001, we had concerns that she was falling behind.  In order to get her Special Ed services, she needed an evaluation.  Part of that consisted of physical tests (hearing, eyes, etc).  I had noticed over the summer that she was holding her books very close to her eyes, so I’d already made an appointment with the eye doctor.

At that appointment, the eye doctor could not get a reading and asked that we come back so he could dilate her pupils and take a closer look.  In the meantime, the school nurse called and we had an extensive conversation about Deanna’s medical history.

Two days later, I got a call from the school nurse.  Deanna’s blood pressure was 250 over 180 and she needed to be in the ER immediately.  This woman, the nurse at my daughter’s elementary school, was the first medical professional that looked at Deanna as a whole person.  She was suspicious and acted on her hunch – and thank God, because Deanna was close to a stroke or heart attack.

After getting past the triage nurse – who insisted on talking to “the patient” and then sent us to the waiting room where we sat for over an hour – we spent all afternoon in our local hospital ER.  When their efforts to lower her pressure went nowhere, we were referred to Children’s Hospital LA, where – on the morning after she was admitted – the chief nephrologist told me that Bell’s palsy was a primary indicator of malignant hypertension.

I wanted to kill someone.

Instead, I observed the other patients and found gratitude.  Deanna’s first roommate was an infant whose life was already over.  Born with complications, the inserting of a shunt had caused extreme brain damage.  This baby, 6 months old, would be on dialysis for the rest of his life.  His parent’s lives consisted of working in shifts so that he was never alone in the hospital.

Deanna spent 4 days in the hospital.  It took 2 days just to get her blood pressure down to normal.  Her second roommate was a 16-year-old who had been rushed to the hospital because a donor kidney for a transplant had become available.  This young girl had been there before – the whole staff knew her.  She’d been celebrating her 16th birthday when she got the news.

Then her father, and a priest, arrived.  There was joy and sorrow.   The joy was getting a kidney.  The sorrow? The donor was her mother – who had just been killed in a car accident.  I could not begin to imagine the emotional state of her father – a man who was going to see his child have possibly life-threatening, yet life-saving surgery – and discussing a funeral with his priest.

I thanked God many times during those 4 days – and many times since – that Deanna didn’t have anything more horrible than high blood pressure, controllable with medication.  She had some heart damage and hypertensive retinopathy due to the length of time her condition went undiagnosed, but all that healed within a year of getting her blood pressure under control.

Last week, when I returned home from a day of visiting doctors with yet another mystery illness, I got there in time to tune into my favorite television show, “The Vampire Diaries” and during the episode, the following line was spoken:

“It’s no easy task being an ordinary parent to an extraordinary child.”

I cried.  I’d spent the day with a daughter who showed extreme grace under pressure, and I felt so inadequate.  I was doing everything I knew how to do and nothing made a bit of difference.  My child was still suffering, but looking at her most of the time, it would be hard to tell.

So I’m writing this from yet another hospital room.  Deanna is so familiar with these places and routines, no one needs to tell her how to operate the bed, and she doesn’t mind when people come in at all hours of the day and night to check her vital signs.  She is gracious and in great spirits.  She’s bonded with a wonderful nurse here and after the last episode, gave her an enormous hug.  The nurse – Amy – beamed.  It is hard to resist my daughter’s prodigious charm.

Last night, she had two episodes, one lasting 6 minutes, the other 8.  The muscles in her legs, arms, hands, neck, head, torso, and tongue contract and cause her to move in odd ways that look like a seizure.   Her limbs flailing wildly, Deanna is completely bound by what her body is doing and unable to control it – but conscious through it all.  When it is over, it’s as if she’s run 5 miles at top speed.  I write this as she is sleeping – the one time I can be sure – so far – that no episodes will disturb her.

I do not know why my precious child has had so much suffering in her life.  I do know that her joyful spirit makes my job as her mother much easier.  I have always said that if you must have a child with chronic or serious illnesses, Deanna is the child you would want.

So now, we do what we’ve done so often in the past.  We wait.  For the right connection to the right medical specialist who can give an exact diagnosis and offer up some treatment that will provide our girl with relief.

I am not great at waiting.  Patience is not my strong suit.  I believe Deanna is my gift from God – a living lesson in the art of patience – and grace.

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