Sunday, June 24, 2018

Making Changes and Even Accepting Help

Let’s get this out of the way first:  Yes, I still have some residual numbness and tingling from my small stroke.  I wake up every day assessing my numbness.  Thankfully, the intensity is getting less and I rarely feel like I have a fat lip but my face still feels a little frozen and my hand feels like it is still asleep.  It will take time for all of that to go away but not a day minute second goes by that I am not incredibly grateful at how lucky I was to have this be the only remaining issue from having a stroke. 

I am not about to squander that good fortune.

My neurologist said I needed to exercise more (well, technically, start exercising), drink a lot of water and eat healthy.  I had already significantly reduced my carbs so, hey, that’s something  (please don’t mention cake, cookies or ice cream around me or I will be reduced to a puddle of tears of longing and sorrow and no one wants that).

She also said I needed to reduce my stress. 

Oh my!  That’s a tall order but I am motivated to do it!  I want this to be my first and LAST stroke.

My ideal way to reduce stress would be to buy a beach house, walk the dogs by the ocean every day, watch sea otters (or seals?) frolic in the water, write and eat the vegetables Richard grows in his garden (we would starve if we depended on me to grow anything).

The problem with that plan is we do not have a beach house fund, I still need to work if we want to be able to feed the dogs and I really don’t know the difference between a sea otter and a seal. 

Plan B it is.

We hired a house cleaning service which is the best (and easiest) thing I have done.  What a load off!  I wasn’t just stressed from having to keep everything super clean (especially with the illnesses we had going around here last winter) but it was the stress of stressing out because I did not have the time to do it!  (My stress even has stress!)  Having housekeepers come twice a month has been a tremendous relief. 

I emailed all of Robert’s doctors (he has several!) and told them what was going on.  One recommended getting a case manager from Robert’s medical center and referred me to a specific person.  I didn’t even know this position existed!  She’s been a huge help with referrals for home health agencies as well as for respite care.  Kudos to Robert’s team for not only caring for him but also recognizing the need to help the caregiver!  Love those people.

Richard is in charge of grocery shopping but has been laid up with his own health issues.  He started ordering groceries online and scheduling them for delivery!  This is so simple but it saves a ton of time and has been a wonderful way for both of us to reduce some of the stress of running a household. 

Me and Rach in the ER
Robert has been going to physical therapy twice a week but I reduced it to once a week.  I know that more physical therapy is best for Robert but I also know how stressful it is to make such an outing (not to mention missing some work) in order to take him to these appointments.  Robert will not suffer from a slight reduction in his PT schedule. 

I am still working full-time but reduced my time in the office.  I leave mid-afternoon and do work from home for a few hours.  So far, that has been a wonderful change.  I do wonder if I will be able to continue to work full-time and care for Robert, however.  For now, I have to if I’m ever going to get that beach house! 

I planned a much needed vacation with Richard (something we’ve wanted to do for a while) and called an agency to help find respite care for Robert.  I now have two agencies working to find facilities and I will also continue my own search.  We need this vacation and I refuse to feel guilty about admitting that we need this.  Respite care is tough to come by and I’ve been told that it may not be possible to find until two weeks before our vacation.  Yikes!  That’s a little stressful for a planner like me but I have faith it will work out.  It has to.

Finding a home health aide is the last thing I am working on.  This is the absolute toughest thing for me to do.  It’s not because I don’t think others can do as good of a job as me or Richard but because what is needed is not hard.  I can do hard things so I can certainly do the little things too!  I pride myself on plowing through tough times and getting things done. 

I can do hard things. That’s practically my personal motto.  I mean, I even have a sign that says that!

Taking care of Robert is not “hard” but it is time-consuming.  It is a relentless barrage of laundry, changing briefs, helping in the bathroom, bathing, organizing medications and dispensing medications, doing his breathing treatments and walking with him everywhere he goes so he doesn’t fall.  It is taking vitals twice a day and keeping a log of seizure activity and any signs of pneumonia.  It is waking up when he gets sick or confused in the middle of the night and calls out for me.  It is constantly staying vigilant so he stays healthy and, frankly, alive.  

I just want someone to help out once or twice a week to fold laundry, take Robert to the bathroom, get him into his pjs and help him do his PT exercises.  I would love to have someone stay with Robert while Richard and I went to dinner or just coffee (decaf for me, please). 

It’s tough for me to let go and allow this extra help in our home because I want them to do things that I know I can do. 

Except that I just can’t any more.

That’s the realization.  Yes, I can do hard things but it’s time for me to allow myself not to do them all the time. 

It has only been three weeks since my stroke so I think I have done a good job with the changes.  I am going to keep walking, drinking water, dreaming of cake, reducing stress and accepting help. 

I have to. 

That just might be another hard thing that I can do. 

Saturday, June 9, 2018

Don’t Freak Out but I Had a Stroke

Yep, that’s what I have been saying to people lately.  I look the same but, yes, I had a stroke.  Not a TIA but a small stroke.  My episode in March now appears to have been a TIA.

I am okay and I am very, very lucky. 

The stroke was an Ischemic Stroke in the right side of my Thalamus and caused the whole left side of my body to go numb.  A week ago, I had a couple of episodes like what happened in March (slight tingling in my hand and face but not bad) just before my whole left side numbness. 

My new home office decor
I knew this was a problem so Rach took me to the ER and I was seen immediately.  The hospital started their stroke alert protocols and put me in a room.  They did a bunch of neurological tests and I didn’t have any weakness; I was able to read, talk, touch my finger to my nose and to the doctor’s moving finger and saw all the fingers she held up.  I know these neuro tests as Robert goes through them all the time at his appointments but it was very surreal having to do them myself.

My only symptom was that I had numbness and tingling (kind of like my left side was asleep). 

After passing everything with flying colors, they didn’t think I had a stroke.  Stroke alert was cancelled but they ran some blood work and did a CT scan just to be on the safe side.

They still didn’t think I had a stroke. 

I only had the whole left side numbness.  (Let me tell you how odd it is to have half your forehead feel numb!) 

The doctor had no idea what the issue was and suggested it was possibly a panic attack caused by stress.  Yes, I have a lot of stress in my life but I haven’t had a panic attack in years and I have very specific triggers for them. 

I knew this wasn’t a panic attack but also know that stress does weird things to the body. 

I didn’t know why I had numbness, the doctor didn’t know but it seemed reasonable to think this wasn’t a stroke.

So we left the hospital.  We all thought the numbness would be gone by morning. 

When I woke up on Sunday, my leg numbness was gone but I still had the numbness in my left arm and face.  My face felt like I had a Novocain shot from the dentist except without the drooling. 

The ER doctor called to check on me and became concerned that I still had numbness. She ordered an MRI and, as luck would have it, there was an appointment later that afternoon.  I’ll take it! 

Rach went with me to the MRI (poor girl was so worried about me and I hate worrying my family!).  I tried to convince the radiology tech to show me my scan but he refused. I pulled the “I won’t know what I’m looking at” ploy (even though I have seen enough of Robert’s MRIs to know if mine was normal or not).  He must have seen right through that so I left without seeing my scan.  Oh well. 

The next morning Richard had a third skin graft surgery so Robert and I drove him to the hospital and got him settled in pre-op.  Robert and I waited with him doing his word search book and me answering emails from work.  I called to set up an appointment with my neurologist and found out he had scheduled a phone appointment for me so I waited for his call.  He was on vacation but had been answering my emails and was on top of monitoring what was going on with me.

He soon called and told me what happened Saturday night was, in fact, a stroke. 

You mean a TIA? 

No.  You had a stroke.  

Believe me, hearing that is enough to practically cause another one!

He told me I needed to start on blood thinners immediately and he wanted me to take a “load” dose of four pills then one a day along with the aspirin.  He also increased my cholesterol medication and told me to go to the ER if I have any other symptoms. 

He called the meds into the hospital pharmacy since I was already at the hospital and I took Robert to get them.  The pharmacy was up a hill so I set Robert in the shade and told him to stay put.  He joked he would go to France.  Funny guy.  I’m worried about my stroke and he is cracking jokes.

Probably the best thing for me. 

I called Rach, a couple of friends, Other Brother and realized I couldn’t even tell Richard yet because he was still in surgery!  After taking the meds and talking to everyone I started feeling numbness in my leg again and freaked myself out. 

Since the doctor had said to go to the ER if I had any other symptoms, I walked to the ER, pushing Robert.  I called Rach for me and Richard’s brother, Jimmy for Richard.  Jimmy was actually at the same medical facility at his own doctor’s appointment so he came over to check on Richard while I went to the ER.  Rach met me at the ER and ran between me and Richard to update him when he came out of surgery and to keep an eye on me. 

Robert sat in a corner of my room and contentedly worked on his word search puzzle. 

I explained to the doctor what was going on and he was very reassuring.  He explained that it was unlikely I was having another stroke since I just loaded up with blood thinners.  He called the neurologist on call and ran more blood work and did his best to keep me calm.  He ordered a heart monitor for me and, after a short while, I was able to leave and visit with Richard in the post-op room. 

It was quite a day. 

I’ve since seen a stroke specialist who ordered more tests, more lab work and answered all my questions. I’m waiting on all the results but, in the meantime, I need to watch my diet, exercise more and reduce my stress. 

Reduce my stress. 

After the year I have had, I am ready to do just that.  Yes, it is cliché but I am going to say it:

This was a wake-up call.

My neurologist said I am very young (why, thank you!) and in otherwise good health.  She sees no reason why, with lifestyle changes, this will not be a one-time thing. 

She even said that my residual numbness in my hand and face and the occasional leg numbness will most likely go away eventually.  I would love for the numbness to go away but, right now, I am using it as a constant reminder that I need to make changes. 

I am very motivated to do so and am very grateful the stroke was a small one.

Note to Universe: Close call with a semi?  Stroke?  Got it.  Message received.  Loud and clear!  (And thank you for not adding dribbling to the face numbness – that would have just been piling on.)