Wednesday, August 23, 2017

THIS TIME

When Rik was dying, we were neighbors.  I could hold her hand for hours if she wanted.

Judy is far away.  Can  you send a holding hand by mail?

Maybe she has more time this time...

Monday, August 21, 2017

MAKE YOUR OWN MEDICAL RECORDS - Before the doctor's office...


Recently I had the mother of all sinus allergy attacks.  I was actually coughing and sneezing too hard to drive.  It taught me that a tissue in each hand can make me forget all I need to say.  Things like what to tell the doctor and what to ask the doctor.  And showed me how careless I’ve been.  Even with my rules:

Keep meds list updated
I update my grocery list daily. But Meds list - the really important one - not very well.   
Mine didn’t have my new eye meds on it.  And it was too complicated. Need to simplify.  Since I’m absentminded, I leave on it some meds I no longer take (with a line through them.)  Just in case somebody wants to give me an Rx that once caused me trouble. Or one I’m really allergic to.

Take your meds list everywhere including to the doctor’s office and drugstore.
The doctor and the med assistant may need to scan it (It’s amazing how office computers eat half or all of my file including pills & meds (like the ones I don’t dare take.) If you drive, a current meds list in your glove box might be worth doing - might copy mine & put it in today. And keep a current one in whatever bag you take with you for a hospital test, especially  outpatient surgery.
 .
Take a list of the questions you should ask (especially if I’m too sick to pay good attention)
Questions like:
What’s wrong with me?

Why do I need this test.    How much will it cost?
 (I asked why a chest Xray, should have mentioned I’ve had a five-year pneumonia shot.)

What medicine(s) are you giving me?    Is it expensive?
Is it a pill. Or pills?  How do I take it (some pills I can’t take) He explained.  (More on that later.)
What does it look like?  He showed me the little packs
Is it a steroid?   Since I took them, I’ve had reasons to wish I had asked that question!!

Write down what he says
If you’re as old as I am, you may hate having your daughter go in with you to see him, but my daughter’s writing is readable, MINE? NOT SO MUCH.  And she asks intelligent questions.  (If your doctor looks AT AND TALKS TO your daughter instead of to you, you can ask plainly to be spoken to directly. (Some doctors have not learned that.)

It’s hard to make myself ask these questions.  But I know asking could save me.   Drugstores, and busy doctors, even mine, are not perfect .)

In the past I have been sent home with the wrong labels on pills. (Luckily I knew what they should look like).
I have also been sent home with wrong, incomplete or missing instructions.  Some pill bottles are so small that instructions are on a sticky flap that falls off way too soon. You may have had that experience.

Yes, people even a lot younger than I am, take off glasses or contacts, and just think they know which bottle is which.  And yes, some people can’t afford the glasses they need to read microscopic drug store label print. A friend bought a 4-inch flat magnifier for those occasions.

 I don’t want to take the wrong pill, or take any pill four times a day instead of one time.

 I have a shiny red folder for each doctor for all this stuff.  It cost almost nothing.  Do it.



Thursday, August 17, 2017

Breast Cells discovery on Twitter


"Researchers Identify Estrogen Receptor Stem Cells In The Mammary Gland"

Monday, July 31, 2017

ALLERGIES, STEROIDS and AFTER-SHOCK



I’ve always had allergies.  When I was a little kid they called them colds. As an adult, only time I didn’t have them was during my wonderful 19 months living at a California beach.  I moved; they came back. The doctor was baffled. They seemed too bad to be allergies.

Then I moved to TX.  And for the first time, the whole nasal thing got infected.  Antibiotics. They cut the infection, not the endless sneeze/cough, runny nose.    

The second year, it was worse. So much coughing and sneezing I couldn’t drive.  The doctor said he'd send two scrips - each day I'd take fewer pills, and in a week I'd be done.  I got two tiny boxes.

When I unwrapped the fashionable “pacs” the first was a Prednisone compound.  No. Uh-uh.  Back in the box. But I was miserable, so I took them.  The antibiotic was amazing.   The steroids were not. The coughing kept on until the tissue showed a few traces of blood with the cough.  After several phone calls, I got the promised cough syrup.  Not enough help. The doctor’s office called and asked if the meds worked. I told them I was at the same place I would have been without the meds.


Mom used to say after disappointing medicine 
 "Either this stuff is no good, or I would have died without it." Hmm.

About a week after the steroids were all gone, the Surprises began.

Suddenly I got red areas sort of like athletes foot ON my palms.  (I have blepharitis- Try taking care of your eye infection with that on your palms!  Put on clotrimazole.)

Same week, I had too many errand in the hot, hot car and no place to park in the shade.  When I got home, the sweaty area at the edges of my hair, and on my neck itched wildly. I got patches of streaky itchy hives and even a couple of bumps. The next day, I still had big itchy red areas when I woke up.

I remembered a dermatologist’s words when I was very young:

..."I think you’re allergic to your own sweat."

 I combed the web.  New words:  

  http://emedicine.medscape.com/article/1049978-overview?the > Dermatology

Cholinergic Urticaria

Updated: Apr 04, 2017 Author: Robert A Schwartz, MD, MPH; 
“Cholinergic urticaria is one of the physical urticarias brought on by a physical stimulus. Although this stimulus might be considered to be heat, the actual precipitating cause is sweating.” 
I changed my routine, stayed in during most of the day   .But I had to make a decision:

I’m due for the next Prolia injection.  Prolia admits even on the web site, that it CAN affect the immune system.  Feeling nervous, I cancelled the Priola for now.  

Steroids should slow the immune system when it over-reacts to something simple.       But HOW long until the immune system is BACK TO NORMAL?,   

Go back to the doctor?  I don't want to be in any med waiting rooms with sick folk. I wear a med mask to the grocery store.  Scared?  I didn't go to Starbucks for a month!  And when I did get there, suddenly a big group came in.  I was too freaked out to stay  

Home –lifestyle?  I can't get the indoor humidity below the upper 50s, which is not good for respiratory problems.  And I itch.





  


Friday, July 21, 2017

BREATHING EXPERIMENTS and a Surprise Kindness


Ever since I moved here, I've had a silent, internal battle with the yard maintenance crew.  More than half of every Friday, their machinery, some of it oversized scatters dirt and whatever pollen for my allergies to inhale.  So I stay indoors.

This morning, after a month of scary allergies and scary meds, I decided I had to walk.  So I rushed out to try for one lap before the yard guys would arrive.  I was almost back when I saw a friend coming with her walker, and heard the hated sound of a yard man starting some machine.

When friend and I started to chat, the machine was silent.  She went on.  He didn't start his machine.  We exchanged Good Mornings, and he didn't start the machine until put my allergy mask on and was well past him.  After I got inside, I was sure he waited out of courtesy for us.  One kindness like that can change my view for the day. (And once before one of the crew had shut down a machine when I approached with a tissue over my nose.  Sad how I forget those kind gestures.


Monday, July 17, 2017

FDA NEWS on BACKSTOP AGAINST HER2 Returning


FDA News Release  seen on TWitter

FDA approves new treatment to reduce the risk of breast cancer returning

For Immediate Release

July 17, 2017

Release

The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.

Tuesday, July 11, 2017

DRY BONES, RUNNY NOSE, WHO'S THE BOSS


My allergies were calm this morning just long enough for a question to rear its ugly head.

I've been checking the calendar so I won't miss the Prolia inj at the end of this month.

And I actually want) to take the next bone density test, but secretly plan it for after Prolia inj #4 has had a chance to work.

The question I shouldn't face right now is:  What if that right hip isn't better?

I've always been sure that I believe in Prolia.  But there are plenty of things patients and doctors believe in that turn out to be.....not infallible.)  I like Prolia, because I am impressed with how it works in the body.  Short version - it does its work and then goes away.

The pills on the other hand grip onto one's bones and may be hard to dislodge.  Like Bondo on a hole in your car (ask your boyfriend.  He may give you a lecture on cars, but he'll probably like that better than a plate of pancakes.  Okay, enough on Bondo.)

The doctor has already hinted that because I already had osteoporosis when I started Prolia, I may have to take more Prolia than these four shots.  Will I do that?

This question will not be answered until Prolia shot 4 has had a chance to act, and the density test results are out.  Probably in August.

Now my fear of authority figures is in play. He's the authority figure here. I feel guilty if I wait for the density test.  And  I still tend to think that if the doctor wants more Prolia, I'll have no choice.   That can be a dangerous attitude for a patient to get.

This was going to be a 3-sentence post.  Oops.  At this moment I don't know.  If the hip isn't better, I may agree to more Prolia.   Not because he's an authority figure, but because I trust him and want him as my doctor.

I still remember that first day in his waiting room when the woman said, "You have the good doctor!"