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
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.