I haven’t written regularly and it is wearing on me. I keep putting things in front, waiting to be ready, to be finished so I can focus. Except life is really busy. And it keeps getting busier. So, while I’m really dating myself…
While I will never ever possess even a fraction of Ferris Bueller’s 1980s spontaneity, I am constantly working on this reminder. I’m a work in progress.
Today we stopped. We sat together. We watched a movie. We enjoyed each other. It was fun. I need to remember to do it more often.
I find myself struggling to keep the story together, while respecting the privacy (she does preread every post before they publish) of my teenager, and maintaining the authenticity of this journey we are on together.
I always try to be positive, and to put a positive spin on everything. It’s how I cope. It’s how I press on. But, it is the same reason it’s been so hard to write.
The cold hard reality is that even when we are conscious of our many blessings, sometimes having a rare disease, THIS rare disease, really just sucks. And, as much as you work to not have it define you, it becomes so intertwined with who you are, that it can become difficult to tease the two apart. In the 6 years since our diagnoses she’s, gone from 3rd to 9th grade. Those are some pretty formative years.
The struggle to stand apart from the disease that takes so much of your time and energy is real. As a teen the level of self-awareness is naturally high. The fear of judgment is one we can all remember. The desire to stand alone, stand apart, and fit in, while not compromising yourself is one I remember as if it were yesterday.
My girl is strong. She is physically strong, as she recovers from countless surgeries, and fights her way back into the pool time and time again. She endures physical therapy. She navigates countless flights of stairs, and is constantly challenging herself to do more.
She is mentally strong. She has a work ethic that is impressive, and grades to back it up. She reads. She questions. She thinks.
She is morally strong. She has ethics that often impress me, and she will not step away from who she is, even for a moment.
She is emotionally strong. She refuses to stay down, no matter what life tosses at her. She handles stress, disappointment, and struggle, with a poise many adults I know are lacking.
She is strong. I know she is strong. Anyone lucky enough to meet her knows she is strong.
She also suffers with PTSD, and severe anxiety.
I see no conflict between her being strong, and suffering.
I watch the age of diagnosis for PTEN mutations getting younger. I see in this blessing and curse. It is a wonderful thing to have the mechanism by which we can survey and protect. It is also a difficult thing for an intelligent child to have to shoulder.
Clearly, her PTSD is PTEN related. There are only so many surgeries, hospital stays, IVs, blood draws, MRIs and other medical dramas one can face before memories are haunting.
The anxiety- we’re working on it.
I have some theories. And I will press until every one of them is shot down, or validated. Her history indicates that she has always had some metabolic issues. Some were first addressed by an alternative medicine doctor beginning when she was 2. I watched things resolve that I thought could never get better.
When her thyroid was removed in 5th grade, just shy of 4 years ago. I knew then it was not a good time. I also knew it was not our choice, as the recent biopsy result with 19 nodules, 5 of them suspicious for malignancy, prompted the endocrinologist at the major cancer center to force the total removal.
Fortunately, it was a benign thyroid. However, that thyroid, no longer in her, now needed to be replaced synthetically.
I was 20 when I lost half of my thyroid. That was hard. This, well, it was just unimaginable. Because, anyone who understates the importance of the thyroid for every single function in the body, in my opinion is under-informed. The endocrinologists are trained to look for one number on a piece of paper and make every decision based off of that number. Except, we are people. We are individuals. We are not numbers.
It took just shy of 2 years before even that number, the TSH (Thyroid Stimulating Hormone – which by definition should not IMO be the “go to” number in someone with NO thyroid to stimulate) stabilized. It also required a change of endocrinologists to get one to listen to me practically scream that her body was not converting the synthetic T4 to T3. I may not have been a good chemistry student, and I may not fully understand WHY she does not process synthetic anything very well, but I confidently know it to be true. This new endocrinologist was willing to give a low dose of T3 a try alongside the T4. Finally the “magic” number stabilized.
Looking back I believe I was lulled into a false sense of security.
There was so much going on those years. Middle school is tough for every student. Factor in 7 surgeries in 3 years and its easy to see where things got complicated.
Looking back again, maybe I should have seen or thought… but there really was no time.
Excessive menstrual bleeding – nonstop for months, led us to an adolescent gynecologist. That led us to a pelvic ultrasound, which subsequently led to a finding of “abnormally thickened uterine lining.” The D&C pathology showed cellular irregularities, highly unlikely in her then 12 year old body. But, we live as the “highly unlikely.”
Even as we were nudged towards hormones, I should have seen. But, it’s easier to see in reverse.
The need for hormones to thin the uterine lining was non-negotiable I was told. The IUD was an unacceptable solution to both of us. So, she was given progesterone.
The medication is pure evil, I am convinced. She handed me the pill bottle one morning and told me to get rid of it. She was done with it. I shudder at what could have become of things if she did not possess the inner strength I spoke of earlier. Her level of self-awareness is eerie at times. I am grateful.
So, we went a while with nothing. And the body began to act up again. This summer we agreed to try a birth control pill. And, still, several changes later, things are not where they should be.
Most doctors want to make all sorts of sweeping generalizations. They want to put everyone in a neat box. Life is messy. Rare disease life is RARE by definition. When you are 1 in 250,000 you just don’t fit in the box.
I first noticed the anxiety increasing in middle school.
“Middle school is hard for everyone…”
The PTSD diagnosis finally came in May of this year. But, I knew even then it wasn’t the whole picture.
This summer we almost cancelled Disney. The pain from her periods had become intolerable, totally crippling her. I called the gynecologist in desperation. She was glad to hear me finally agree to the birth control pill. I was desperate and hesitant, the progesterone nightmare was not lost on me. It was the classic “rock and a hard place” story.
High School started out a little tumultuous. The school she thought she’d attend underwent major changes over the summer. She ended up relocating a few days into the school year. But, she loves the new school. The kids are nice. She has more good teachers this semester than in 3 years of middle school. The high school swim team was strong. So why was the anxiety quickly melting into full scale panic attacks?
She works so hard to keep it all together. She tries to keep it hidden. She is so aware.
The panic settled back into general anxiety, but that anxiety spread to just about everything.
In December I adjusted my work day through FMLA to be able to pick her up at the end of every school day. We spent a lot of time working through so much.
And somewhere in the middle of working through all of this, as people were so quick to offer medication for anxiety, I had some thoughts.
Why had the gynecologist and the endocrinologist NEVER spoken about interactions between their respective medications when both were prescribing hormones?
Simply because her lab tests for thyroid function remain in the laboratory range, there was never a question. No one noticed this actual human being in front of me is struggling.
Why are we so quick to write off the unusual as impossible?
Why won’t we try anything to keep a bright, articulate, in touch 14 year old OFF as many medications as possible?
What if her T4 to T3 conversion, which was always a problem, was masked and not solved by adding a synthetic T3? What if this anxiety has been building for all these years, and exploded at the insult of additional, yet necessary synthetic hormones? What if the answer is harder than adding more medication? What if it will take research, theories, and some “out of the box” thinking?
How do I convince them she’s worth it?
While my PTEN Facebook friends are sending me article links, I am composing my thoughts before writing a more organized, clinical version of these questions to her doctors.
All of this while seemingly insignificant head congestion is cramping her style. I am not sure exactly where it fits in.
The ENT ordered an MRI of the brain to check the sinuses. Turns out the sinuses are clear. Except there was an incidental finding of a brain lesion 9.5mm of undetermined significance. The new neurologist is confident its not a problem, but we’ll have a follow up MRI on February 20th.
In the mean time – no one will touch the congestion other than to tell her it’s “anxiety.”
She deserves better.
So, we will press on.
One year ends and another begins. We’ve grown, we’ve learned, we’ve laughed, we’ve cried. Yet still there are more questions than answers.
I have a feeling that’s pretty much how it will be.
This is life