Giving Thanks, Day 15: November 1, 2017

From http://www.maryo.co/giving-thanks-day-15-november-1-2017/

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

Giving Thanks, Day 4: October 21, 2017

Adapted from this post: http://www.maryo.co/giving-thanks-day-4-october-21-2017/

 

 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

 

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

 

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

 

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

 

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

 

I owe him, the original doctor, and my Cushing’s doctors (who will be featured later!), my life.

 

9 Tips For Safe Travel With Diabetes

Many of these tips work for Cushing’s patients on Growth Hormone, as well.

 

Traveling, whether it be for business or pleasure can easily take you out of your diabetes care routine. Before hightailing it out of town, make sure you are prepared. A little extra homework will help keep your diabetes from putting any kinks in your long-awaited travel plans.

How you prepare greatly depends on where you’re going and for how long. Ask yourself, how will your lifestyle change while traveling? Will you be able to prepare your own food, or will you be eating out? Will you be able to maintain adequate exercise or will you have more down time?

These helpful tips can help you stay on track with your diabetes treatment plan during your summer vacation getaways.

Read more here: 9 Tips For Safe Travel With Diabetes | MedicAlert Foundation

Bee’s Knees

bees-knees

 

No, I don’t think bees have knees but I do – and one of them was hurting a lot.  Mine started, I think, the day after DH’s heart attack – January 28, 2013.

Fast forward to January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

LCL-tearFebruary 8, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.  https://www.nlm.nih.gov/medlineplus/ency/article/001079.htm

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram http://www.drugs.com/ultram.html.  As of this writing, I haven’t used that yet.

February 11, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my knee cap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

vastus-medFebruary 22, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” Read more at  http://sportskneetherapy.com/the-best-vmo-exercises/

February 25,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26,  I went all day with no brace at all!!  A bit of pain but manageable.

Today is February 28 and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

If there are any significant changes (I sure hope not!), I’ll post an update.  When I’m done – and have approval – I intend to keep exercising, walking, climbing stairs, riding the bike.  I never, ever want to go through this kind of pain again.

I’ve learned a lot from PT – lots of new exercises, stretching, how to move manually my knee cap, all kinds of muscle names, that the lateral collateral ligament is attached to my ankle, that ice is better than heat for this kind of thing.

 

no-pain

 

 

 

 

 

44 Ways to Make the Day of Someone With Cancer | Elana Miller, MD

These would work for Cushing’s, as well.

“…Over the following months I experienced a whirlwind of physical and emotional changes. The treatment became increasingly arduous, and I lost the ability to perform even simple functions, including working, driving, preparing food, and running errands. At 31 years old, I thought anyone taking away my independence would be prying it from my cold, dead hands. Unfortunately, that was almost the case.

Thankfully, I had a community of supporters — family, coworkers, friends — who stepped up and took care of me when I needed it most.

When a person first gets a cancer diagnosis, they’re often so overwhelmed they have no idea how to ask for help or what to ask for — but they sure need it. If you have a friend or family member with cancer you want to help, don’t make the mistake of making a vague, questionably-sincere offer “Well, call me when you need me!” (they won’t).

Instead, make your friend’s life easier by anticipating his or her needs and giving tangible, much-needed support. Here is a list of the top favors people did for me that made my day (and made my life much easier!) after my cancer diagnosis…”

From 44 Ways to Make the Day of Someone With Cancer | Elana Miller, MD.

Happy Birthday to The Johns Hopkins Hospital!

English: Portrait of Johns Hopkins

English: Portrait of Johns Hopkins (Photo credit: Wikipedia)

Johns Hopkins is managing my post-Cushing’s care. I’m so glad that they’re still here to take such good care of all of us!

Johns Hopkins Hospital

Johns Hopkins Hospital (Photo credit: Wikipedia)

On this day back in 1889, the Hospital first opened its doors, setting the standard for patient care, research and education for the next 124 years. Thanks for being part of the journey with us.

 

 

hopkins

 

 

Photo on left: “[Johns Hopkins Hospital, front view of buildings and grounds with horse-drawn cab on left.]” Photograph. 1889. From the Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions: Buildings Photograph Collection. Item 47919. www.medicalarchives.jhmi.edu/

Photo on right: By Keith Weller.

Monday – Eight Weeks Post-Op

Monday

I’m happy to report that life continues to return to normal.

I was out walking the dog this morning, and it was snowy again.  The sidewalk was very slippery and it reminded me of that Monday two months ago when I was out with her and slipped and fell.  My shin still hurts a bit from that day.

DH has been out to several meetings and has won a court case – all without driving himself.  He’s still having to “pay” for a lot of activity by napping later.

He’s able to easily put on sweaters now that go over his head.

Tomorrow is our first rehab appointment.  We’re both looking forward to that for different reasons.  I’m eager to get my life back on a schedule.  He’s looking forward to being able to drive and become stronger.

We’re still mostly vegetarian.  I hope to get some food/cooking advice at the rehab meeting tomorrow.

DH went to church again yesterday for Palm Sunday, then we went out for breakfast again.  He’s found a healthy meal at a local restaurant without too much prodding.

He’s busy trying to find a timeshare in Japan that we could trade for although it will be a while before we could consider that kind of travel.

On the 20th, I had to make a very difficult decision.  There’s a Cushing’s Conference in Las Vegas next month.  I already had plane tickets but hadn’t registered for the conference or a hotel room.  I decided that I didn’t feel comfortable leaving DH alone for 5 days with a dog he couldn’t walk or a car he might not be able to drive.  I’m also just afraid to be away that long, just in case…

Hopefully, next week’s update will have more good news to report.