Fighting For My Medical Records

Last week I had to contact the surgeon who removed the tumor because the tumor has returned.  I found out that this surgeon is no longer at the office.  I was never notified that the doctor was leaving her practice.  I was given a number of her answering service and told that my message would be passed on.

The next day I called again and was more specific about the urgency of receiving a return call.  I was immediately connected to the doctor.  She seemed rather cavalier to learn about the tumor.  She conceded, “It certainly sounds like it’s back.”  This doctor referred me to another surgeon and said she’d be glad to release my records to him.

I called the office again and asked for my medical records.  The person I spoke with said that the doctor had taken all of her records, and the doctor would only release them to another doctor.  I said that was illegal.  I could hear a sigh from the other person, and she said, “You will have to take that up with the doctor.”

I cringed.  Why is this doctor not willing to give her patients their medical records?  With all my encounters with doctors regarding my boys’ autism, I have never been denied medical records.

I read the state medical board website which confirmed that this surgeon could not withhold my medical records, especially since this was a case of “continuity of care”.  I studied and memorized several phrases from the website.  I sent an email using several of these phrases and formally requested my records in writing.

The next morning I called the answering service.  I emphasized to the person taking my message to include “illegal to keep my medical records”.  The call ended, and I was closing my flip phone when it started ringing.  The surgeon herself was on the phone.

I explained I wanted my medical records, and she could not withhold from me legally, especially under the “continuity of care”.  She gave me several reasons why she wouldn’t release my records.  This surgeon obviously doesn’t know me.  I am not going to take no for an answer.

The first excuse was, “I’m treating all my patients the same…”  I cut her off.  I didn’t care.  I repeated, “It’s illegal for you to withhold my medical records.”  She was willing to release my records to another surgeon or primary care physician.  For every excuse or reason, I simply repeated the mantra “It’s illegal.”  She finally agreed to fax them to me.

The next day she called me to say that she couldn’t release my records without a written consent.  I told her about the email.  She looked and verified that she had it.  Within two hours, my fax happily printed out my medical records.

I remain suspicious as to why she didn’t want to release them.  I read them and found nothing weird or unknown.  I am disappointed that I had to spend the time and energy fighting this battle to get my records.  This doctor stole time and energy that I could have spent with my boys.  This doc will never understand the impact of her actions.

Tumor Again?

This tumor that was removed has decided to visit again.  It is growing under part of the incision and extends well beyond.  I am not a doctor, so this is my simple, humble opinion.  It feels and looks like the tumor that was removed; however, the speed in which this has developed is much faster.  So am I positive it’s a “tumor”?  No, but if it walks like a duck and acts like duck, chances are that it is a duck.  I do like some sequels.  This is one I could have skipped.

Whatever this thing is, I would not be surprised if this is related to stress.  Lots of people “encourage” me to get rid of the stress in my life.  Sure!  I am not a fan of stress, but stress is innate to a mom of special needs kids.  It’s just part of the terrain.  It’s not like a computer where a person can hit the delete button, and it’s gone.

Life!

Tumor: Stressed Induced?

I received the call from the doc’s office on Thursday afternoon with the lab test results.  The tumor was benign.  YEA.  Ok.  Many questions remain unanswered.  How could this tennis ball size tumor remain hidden for 5 years?  What caused the tumor in the first place?  Could it have been prevented?  These all lead to this question:  Am I taking care of myself?

I highly suspect this tumor is the result of stress. It was growing over muscles that are constantly tight whenever I am stressed.  And when am I not stressed?  When is any mom not stressed?  By nature of motherhood, something always requires attention.

Then add on special needs kids.  Therapies, diets, agencies, doctors all demand attention, but the children themselves are the priority.  And don’t forget the marriage.  The spouses try to squeeze in a few minutes of communication here and there!

I have had some people ask me when I get down time.  HAHAHA.  They usually figure out that there is no such thing for me.  Even if I am sitting, my thoughts don’t stop.  When I sleep, I often wake up, processing information because I can finally think without being interrupted.

Am I stressed?  Yep.  Some doctors have told me that I need to remove whatever causes stress.  Well, unless I can walk away from life, I don’t think I’ll remove it all.  This will be a work in progress.  Of course, I am much more aware of how stress can impede my health…

Home From Surgery

Surgery done.  Outpatient basis.  Am home.  Whew!

This all started about 6 weeks ago.  Yep, I noticed a lump, bump, or thing on my right shoulder blade.  It was on top of sore muscles–muscles that are always tight when I’m stressed.  (Connection? Hmm.  Would not be surprised.)  There was no pain, no redness, no itching.  Just this lump.

Surgery time! I was awake through the whole procedure.  After the local anesthetic took effect, I felt nothing but a lot of tugging and pulling.  The surgeon described what she was doing.  Not a bunch of detail, enough to keep my imagination in check. The incision is about 3 inches long, so this tumor was not small.  After all was done, I saw the tumor.  Gnarly thing.  A big clump of tissues banded together.

This lovely collection of unwanted cells will be sent to the lab for testing.  The doc is fairly sure that it is benign, but I will wait for official results before closing this chapter.  I don’t want to think it’s all done, only to find out it’s not. 

I asked how long it had been growing.  The doc estimated 5 years.  She is not sure how it remained hidden, but it did.

It’s been a few hours now.  My right arm tingles.  Pins and needles kind of pain.  Think of the funny bone being hit just right; then the arm feels a tingling paralysis.  Muscles are tight throughout the neck and shoulder.  Other than that, I’m fine.

Just have to wait for those lab results. In the meantime, I get to sit and watch a movie marathon from my recliner.  Life is good!

Getting Through The End Of The Quarter Workload

Nearing the end of the quarter is not fun for teachers or students.  For an autistic teenager, it’s an anxious-ridden, turbulent time.  If autism is coupled with OCD (Obsessive Compulsive Disorder), it’s a nightmare for the family. 

This last weekend Nicholas presented me with the work he had to accomplish.  He had a huge project due on Monday.  He also had a major test in that same class on Monday.  He had another project due later in the week.  This particular project required drawing and writing:  the two weaknesses of Nicholas.  There were other assignments and tests, also due on Monday.

Monday Morning Blues awaited, but we could lessen that impact with hard work.  The trick was to not let Nicholas feel anxiety.  Once that hits, game over.  That means he can’t focus anymore.  Literally.

I spent the weekend working with Nick.  We prioritized.  What had to be done immediately?  What could we use as a “break”?  When I saw how much information this one test was going to cover, we instantly started studying.  I learned with him.  We focused on major concepts.  Then we added details.  Memory is Nick’s strength.

When we had to take a break, we focused on the projects.  We alternated memorizing and projects.  Until 5pm Saturday evening.  I could see stress starting to build in Nick.  We had covered so much, yet we had much more to do.  I had to pace us–to keep going slowly but steadily.

By 6pm Nick’s eyes revealed signs of anxiety.  We stopped.  I made a decision.  No more project work.  Nick’s eyes widened.  I told him enough was enough.  He had to focus on one item.  I said the test was more important that the project.  I told him I’d email the teacher right away.  He was unsure, but he immediately sighed.  Really.  His shoulders relaxed.

I emailed the teacher about the situation, even saying that I assumed she would be understanding and generous.  I received a reply Sunday morning.  The teacher agreed to let Nick have an extension on the project.  She enlightened me that she knew Nick had been working on it since the project was assigned.  He was asking her questions daily.  So this definitely was not a case of procrastination.  I showed Nick the teacher’s email, and he was happy.  Nick was happy.  🙂

Nick came home yesterday, and he said that he thought he did well on the test.  It hadn’t been graded, but he wasn’t concerned.  Which is unusual.  He said he had to focus on the projects.  Last night we drafted three pages of his project, and he completed them.  Tonight we’ll do the graphs and the written assignment.  That will be one project done.

Then the next project awaits.  Always, one at a time!