One month ago today

I drove to the pharmacy to pick up scripts today for Mr. Phat and me.  I hadn’t driven in over a month and I realized that life was very different a month ago today when I embarked on a ski trip to Switzerland with 20 friends.  We left on Leap Year Day amid knowledge of a novel Coronavirus that still hadn’t had much of an impact in the US.  There was no reason not to go so we went.

This is the view from our hotel in Wengen Switzerland.  Such a gorgeous spot – my group has been coming here since 2012, although I hadn’t been in 5 years.  We had all conditions that we skied in, sunshine, snow, fog, rain.  I also took a couple days in the middle of the trip to meet up with my high school BFF who has lived in Switzerland for 40 years.

That was the gift I brought to her which has the longitudinal points of her hometown.  We had some fabulous meals, walks and talks.  I went back to Wengen for some. More fun times.

the Eiger, Monch and Jungrau

Lunch on the patio with some of our group.

Day 9 was definitely the very best lunch!!!  Up on the Eigergletcher restaurant.  Lambs ear salad with lamb filets and some endive.  So delicious.

That was the highlight of the food experience.  And the ski experience because after lunch I fell and broke my ankle.  A non structural break, but I was unable to ski the last 3 days.  It didn’t ruin my trip at all – I relaxed and read a book.  I’ve not done that in a long time.

But everything changed the second week we were there.  We saw the number of COVID19 patients ticking up in Italy, the neighboring country to Switzerland.  Watching the news got painful  and overnight on Wednesday night our President instituted the travel ban which was to begin Friday night at Midnight.  We had fate on our side because our flight was scheduled to land at 9 pm on Friday.  Our group had the last flight Swiss International Airlines took from Zurich to Boston.  We landed and I was in the car, with my luggage’s and broken ankle in 30 minutes.

Our group has self quarantined for 14 days.  Nobody has gotten sick so far, and I was the youngest traveler – we had 6 under the age of 66 and the rest were in their 70s’ and several 80 year olds.  Knock on wood.

Being home, we’ve watched live change drastically each day.  I am fortunate to be able to work from home.  Mr. Phat is semi retired and won’t be showing houses in the near future, but that is OK.  I waffle between emotions of anxiety and impending doom, then remind myself that we are truly blessed.  If I have to be quarantined, I’m happy to have it be here in my little house tucked in the woods with my favorite man in the world.  We are blessed because we have enough.  Enough food, Toilet paper, water, heat, and love.  Mr. Phat and I are both high risk – he’s a heart patient and I’m immunosuppressed.  So we have been ordering delivery of groceries (and a case of wine) and feel fortunate.  The only trip out I’ve taken was this morning’s ride to the pharmacy when I recognized how much has changed.

Please stay healthy and cautious.  This too shall pass.  I’m going to share some food pictures from Switzerland.  My jean still fit!!!

 

I’m doing OK

this post was written 2 weeks ago. 

Happy Sunday.  It’s been a beautiful end of summer weekend in New England.  Truly bonus weather for being outside.  We were fortunate enough to sail with friends who have a beautiful sailboat.

That’s me behind the wheel on our return.  There was no wind on the way out so we motored out and rafted with friends for lunch and chat.

I’m feeling good. That is probably the reason that I’ve not written.  A fellow blogger wrote recently in her blog that it seems like we should only be writing when we have struggles.  Writing when we are doing well seems counter to what blogging is for.

But the reality is that I’m thriving lately.  Even my visit 2 weeks ago with the Rheumy was so positive.  He was incredibly surprised with my blood tests and my description of how well I was feeling.   After a really rough spring, I’m off prednisone and going to back down on the amount of methotrexate that I inject.  As a matter of fact, I am 2 days past my injection date – I totally forgot on Friday because I felt so good!

I have been walking everyday and am increasing it now that the weather is cooler.  I’m trying to figure out what else I’m going to add for exercise this fall for ski prep.  My work schedule is very busy so I’m not sure that I would be loyal to classes, not sure I want to do the gym or do something online from home.  I’m still figuring it out and accepting suggestions because the place where I’m not doing well is weight.  I’m up.  6 months of prednisone took its toll and I need to do better.

Mr. Phat is feeling ok.  Trying to figure out life as a heart patient with neuropathy.  His heart specialist keeps tweaking his medication to find the best balance.  They’ve dried out the fluid from his body almost too much, so he’s dizzy and the kidneys aren’t functioning as they should.   He’s also more aware of being chronic illness challenged and that’s the best victory to have.  He’s learned to balance his schedule so he can still work some, rest some, have fun and enjoy his life.

Summer

Good morning from beautiful New England.  I am happy to say that after a tough RA spring, my body has responded to a steady dose of meds and I’m feeling better.  Been off the prednisone for 10 days or so which I am always grateful for.  I’ve been doing house projects again and will be stepping outside to stain some steps this morning.  I think I’ve lost a little of the bloat and weight from the steroids because the clothes feel better.

RA be damned!!!

Must be spring

It must be spring if my RA goes out of control.  It must be spring if I get a respiratory infection and have to stop my RA meds.  It must be spring when the pollen is strong, causing sneezing and runny noses.

This was an incredibly wet spring which resulted in lush gardens and lawns and LOTS of pollen.  I imagine between the allergens in the air and the several weeks I was off my meds fighting upper and lower respiratory infections, my RA didn’t stand a chance. It’s been incredibly painful and my joints are swollen, necessitating me to take that nasty drug Prednisone more frequently than I like to.

I have even had to forage into my stash of pain meds several mornings.  This is something I’ve not done for 2 years, since my knees were replaced.  Just when I think that my RA is becoming a non issue in my life, it takes over my life.

I’ve stopped eating the inflammatory foods such as wheats and dairy, but I’m not sure that has had an impact yet.  My blood work this week showed that the inflammatory markers were through the roof.  I see the rheumy on Monday so we have much to discuss.  Meantime, I’m hoping to get my butt outside and do some gardening this morning.  While it may not be good for the joints, it’s good for the soul

Spring

Photo by Pixabay on Pexels.com

Two weeks ago I was in the desert of California, soaking up the dry, sunny climate and I felt wonderful.  Flew home late on Sunday night and it was raining.  Monday was grueling – I went into full RA flare.  My wrists hurt, my fingers wouldn’t move. It was a cruel reminder that climate can make a big difference and perhaps I’d feel much better living in a desert environment.  But I do love New England and it would be hard to leave.  I also have a really great job that I cannot leave or retire from.  Yet.

It’s rainy here today.  My body has adjusted and I merely ache; it’s not painful like it was when I first flew home.  Mr. Phat is doing better.  His heart failure is behind him and he seems to be managing it better than he has in the past.  I’ve taught him The Spoon Theory and encouraged him to recognize signs after he eats certain foods.  Being mindful is helpful.  We are waiting on some additional test results before taking the next step, but he did have a couple of good days in a row this week and that hasn’t happened in a couple years.  Hopefully we are figuring it out.

Happy Easter.  Happy Passover. Happy Spring!

 

 

Photo by Pixabay on Pexels.com

R&R

Good morning from Palm Springs California.  I came with a girlfriend who had a conference.  I hadn’t been away in too long and life had been  stressful with Mr. Phat and his issues. When my friend asked if I wanted to join her  she didn’t need to twist my arm.

It’s been nice and relaxing after our extended plane trips to get here.  Airplane travel isn’t relaxing these days.  I sat by the pool yesterday, something I haven’t done since my honeymoon in 2016.  We have had some nice meals and I’ve been walking each day.

I feel very good out here in the desert.  No joint pain at all.  None.  No morning stiffness.  I guess that’s the difference from the damp, wintery New England weather and the warm dry California desert.  I have not felt well this winter with my RA.  I think maybe that means I need regular visits to the desert.

Mr. Phat spent 4 days in the hospital last week and lost over 10 pounds of fluid and feels much better, but still not great.  The primary care doctor has been dragging his feet about addressing the B12 issues and the cardiologist doesn’t want to own the B12 diagnosis and thinks Mr needs a new defibrillator Installed.  One that does more pacemaking then defibrillation.

If these doctors could talk to one another, maybe they would figure our that the a-fib and other erratic heartbeats started within 45 days of the initial symptoms that we believe are the B12 deficiency.  One of the symptoms of a B12 deficiency is irregular heartbeats.  I would think we need to treat that first and see what happens to the heart before we rush into more surgery, including replacing his internal cardiac device.  Perhaps some of the heart failure is the B12 issue.  C’mon doctors let’s get with the program

To you, my readers, thank you so much for chiming in after my last post when I went ballistic at the doctors.  You were all so supportive and a great comfort to me.  I didn’t realize all of you were reading.  And it made me know that I am not alone in this journey.  All of you have my back. And my hand. Thank you from the bottom of my heart.

Bleeping Mad

I’m bleeping mad.  I’ve kept myself quiet for a long time, just waiting for all the answers that we needed and while we still have some answers left to get, I am going to let off some steam.  Just like a quick release of my InstaPot!!

My husband, Mr. Phat as some of you know him, has been sick for 2 years.  It started very slowly in February of 2017 with some neurological type symptoms.  Pain in the bottom of his foot, pins and needles, incontinence and the inability to catch his breath.  In April 2017 he ended up in the hospital with the flu and Afib.  Since that day he has had Afib on and off and the neurological symptoms have gotten worse and worse, making him a near invalid.

Since February of 2017 he has seen 13 different doctors, some more than once and that doesn’t include the doctors during his hospital stays.  He has had 10 procedures, either trying to diagnose his problem or to fix his erratic heart beats and he had a lumbar spinal fusion a year ago which only exacerbated his symptoms.   He has had 6 hospital stays including the one that started at midnight last night when I drove him to the hospital because he couldn’t breathe.  He’s having another episode of chronic heart failure and he will be ok in a day or two.

In 2017 we paid $13,629.58 out of pocket for our medical co pays/deductibles and for 2018 Chris’s treatments alone were $7,994.59 out of pocket.  Plus we pay a considerable amount of money for our Blue Cross Blue Shield medical insurance.

He has lost 30 pounds. Without trying.  A neurologist that we saw locally decided that Chris had ALS.  This devastated us for a while until we realized that diagnoses didn’t fit his symptoms.

Finally on Monday we went to Brigham & Women’s Hospital in Boston to the Neuro Sciences Division.  We met with a young doctor for over an hour and then he brought in the co chair of the department.  The guru, we were told.  Both of these doctors agreed that Chris does not have any neurological issues.  No, he has a B12 deficiency.

The Cardiac doctor at the hospital last night said that according to Chris’s blood work, he has pernicious anemia.  Want to know the symptoms:

Fatigue, Shortness of Breath, Dizziness, Pale or yellow skin, Irregular heartbeats, weight loss, Numbness or tingling in your hands and feet, muscle weakness, unsteady movements, mental confusion or forgetfulness.

These are ALL the Symptoms that Mr. Phat has expressed to these 13 doctors over the past 2 years.  Some of the have heard his complaints several times.

40% of people over age 60 have B12 deficiency issues.  Hello???  40%!!  Don’t you think one of these doctors would have recognized a relatively common health issue?  This shouldn’t be rocket science.  This seems rather simple – they were looking at deep stuff like MS, Parkinsons, ALS, Amyloidosis, Multiple Myeloma and it was B12.  I cannot tell you the frustration I feel for the 2 years of his life that Mr. has lost.  The unnecessary, painful, debilitation surgery.  The tests, the visits to the hospital, doctors offices.

To add insult to injury, we received 5 pages of invoices from one of the medical providers this week looking for $3891.52 and $1304.08.  I can prove that I paid most of it, but the $40 co pays that go back to 2012 and 2013?  Really?  How did we get out of the doctors office with out paying our copay?

I feel better already.  I have always preached to be your own advocate, and as much as we have tried – and pushed and cried and asked, we didn’t get the right answers.  Sub par care for sure.