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

About bonniejpreston

Life is an adventure. Make every day count. Enrich the lives of those you meet along the way. Don't show up at the end with a wish list. Invest in your health - the dividends paid are priceless. Listen at least twice as much as you talk. Enjoy the journey. Namaste
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