Diagnosis: Madness!!!

It’s official…I am indeed an oddball. Wait–I’m sorry. I’m not an oddball. I’m simply a “Highly Sensitive Person!” Apparently this is a personality trait, not some sort of major dysfunction. I’m NORMAL. Yay, me. Now, if only we’d figured this out say…I dunno…THIRTY SEVEN YEARS AGO?

According to Elaine Aron et al about 15-20% of the population are pretty damned sensitive. Apparently we have “a sensitive nervous system, [are] aware of subtleties in his/her surroundings, and [are] more easily overwhelmed when in a highly stimulating environment.”  I, apparently, am among the most sensitive of the sensitive.  Oh yes, I can cry at the drop of a hat.  I can walk into a situation and sense and feel every little danged thing.  I overthink everything to death.  My brain never shuts off.  I have trouble sleeping more than 4 hours at a stretch and I internalize EVERYTHING!  I also have signifcant trouble with noise, light, crowds and disorder.  I’m also highly creative, intuitive, empathetic, kind and caring.  I’m a great friend when I’m not too overwhelmed with the world to be a great friend.  I give my family the best of me (because they HAVE to come first) and often there isn’t much left over for other people beyond my children and husband.  Particularly lately since I worry so much about Katie.  So if you’re someone who’s noticed I’m a lousy friend, I apologize to you and promise to work on it as I work on myself.

So this revelation that I am an HSP leads into something else.  My super-sensitive brain set me up for another crisis of sorts.   I have PTSD, and a fairly complicated version at that, which isn’t surprising I guess, if I let myself think about EVERYTHING I went through over a 5+year period of time.  But wow, there’s a name for it…the flashbacks, the worry, the anxiety…the pure anguish of it all.

For those not in the know, Katie was mysteriously ill literally from birth.  She screamed ALL THE TIME and had the worst COLIC her doctors has ever seen.  It was heartwrenching to watch her, and to try everything and not be able to help her. Even as a newborn she amazed and flustered all the neonatal nurses by her inability to settle and sleep, despite all their collective years of experience soothing newborn babies.

At a mere 16 months of age, she was finally diagnosed with that evil, terrible disease, Ulcerative Colitis (later to be tentatively changed to Crohn’s; they are very similar and difficult to distinguish in small children).  This condition had been ravaging her body and causing her endless amounts of physical pain since birth.  She went on medication and was quite a bit better for about six months and just when I began to breathe a sigh of relief that things were going to be OK, she got very ill again.  She had an extended “flare up” of the disease and for months was literally wasting away before our eyes.  She was in and out of the hospital and eventually got an NG tube (which was a blessing) but first we almost lost her to pediatric stroke and a series of IBD-related medical complications.

Although she’s a happy, healthy six year old today, I still am plagued by flashbacks, anxiety, worry, nightmares and so on.  I have felt guilt and shame over this because we were blessed with a virtual miracle; the best possible outcome we could have hoped for.  Shouldn’t I just be grateful that it turned out okay and that I have a healthy, happy, intelligent and high-functioning daughter?  Try as I may to ONLY focus on the positives, I can’t help but worry and I can’t always control the “what ifs?” that have taken up permanent residence within my brain.  The future scares me…Katie is on some frightening medications (such as the chemotherapy drug Azathioprine) and faces quarterly blood draws and regular colonoscopies.  Dental work takes on a life of its own since no pediatric dentist I’ve found is willing to work on a stroke survivor outside of an OR.  There’s just so much stress and worry.

My therapist says that the YEARS of stress and trauma are what caused the PTSD.   During the time Katie was suffering without a diagnosis (and undergoing tons of medical tests and therapies) we unknowingly bought a (new) house with structural failure, moved from CA to AZ, were unable to sell aforementioned house for over a year, fought the builder to sell it back and lost $100k in the process.  Hubby’s then- contract employer didn’t fund their health insurance plan and stole 7 months of premiums (at $1350.00 per month) from us, didn’t pay any claims and left us with over $35k in medical bills.  I became pregnant when Katie was nine months old and we were thrilled (had planned a fourth child all along) but the timing could have been better.  I had an unexpected high-risk pregnancy where I developed gestational diabetes very early on and was insulin-dependent from week 14, had a “threatened miscarriage” from a ruptured ovarian cyst during week 14, had a 5% chance of keeping the pregnancy, had polyhydramnios and an increased risk of uterine death or stillbirth and had a 1/30 chance that our youngest would be born with Down Syndrome.  The REALLY important stuff turned out OK and we had a healthy baby boy at the end of it all–I wouldn’t change any of this for anything because otherwise I may not have had THIS particular baby and he’s awesome and completes our family.  (It’s still very hard to lose that much money and the insurance scam is still unresolved 5+ years later.)  I KNOW we’re VERY LUCKY.  But this is all a LOT to handle in a 5-6 year period of time and my brain just did its best to keep me functioning while it was all happening.  About 18 months after Katie’s stroke we were moving (yet again…did I mention we’ve moved 4 times in 5 years?) and I started having panic attacks–I couldn’t figure out why because I was happy about the move.  Then the nightmares started.  And the the flashbacks.  The worry had always been there.

At least now I know that I’m not crazy but rather quite normal according to my therapist who is also a trauma specialist.  I chose well–and sought out the person I felt could really help me.  We’re going to work through. . .everyhing.  It will be a long process but it helps immensely to know that I’ve done the best I could under the circumstances.  I’ve managed to hold it all together well enough that my marriage and family are great and I’m so incredibly gratfeful for that and the changes this has encouraged.


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