Is it really Mid August?

The summer has flown by.  I’ve started writing several times over the past week to update you but then stopped and never got a post done.

First of all, I’m feeling great.  I’ve been walking alot, and walking faster than I have in a couple of years and other than an occasional twinge of pain, I don’t think of my knees. Looking back, it seemed like a long time, but it really was a 5 1/2 month interruption to my life that I’m really glad I went through.

Lately our issue has been Mr.’s heart health.  His heart has been fluttering with Atrial Fibrillation this spring and summer.  Most of the time we weren’t really aware of it, and he has a home monitor that wasn’t working properly and didn’t notify his cardiology office.  He’s felt punk this year, but we attributed all of that to the lyme disease, never suspecting that his heart wasn’t operating efficiently.

When he had trouble breathing last week his cardiologist suggested he go directly to the hospital to be monitored.  He ended up staying for a few days and he’s doing a lot better now, but more importantly we learned a lot.  We are not sure why he was never instructed on proper heart health procedures, such as weighing yourself every day.  In the hospital he lost 9 pounds of fluid that was caused by an inefficient heartbeat.  The hospital cardiologist and a top notch physician’s assistant explained that he should be eating 1500 mg of sodium per day or less.  We haven’t watched sodium intake.  He didn’t weigh himself every day, although he knew his stomach was distended and had mentioned it to his 2 cardiologists the week before he visited the hospital.  Mr. doesn’t have high blood pressure of bad cholesterol that typifies many heart patients.

My point here is that as mad as we were about not being made aware of what we needed to look for, and as mad as we were at the seemingly subpar care we may have received prior to be admitted to the hopital, we really can only blame ourselves.  On this blog I’ve always preached about being your own advocate.  Asking the questions.  Making the doctors explain certain symptoms.  Being aware and reading all we could.  So I take part of the blame that we didn’t follow my protocol about questioning everything.  As I said to Mr. Phat, I’m sorry you had to spend some time in the hospital, but if it results in better heart health for you going forward, then I’m glad it happened.

Now if we can take care of the lyme……..

Saturday musings

I’m vacuuming as I write this.  Seriously.  I purchased a Roomba earlier this summer.  We had given one to my parents at Christmas. They’re hard to buy for and my husband hit on the idea, we researched and bought it for them.  And they love it.  They talk about it regularly – I think mom called it an amazing little machine.  So I had some coupons and gift cards and I bought one.  We also love it.  My kitchen floor has never been so clean.  We dock it in the kitchen in a corner and Mr. Phat will start it up when he takes the dog for a morning walk and shuts it when they come home.  A large part of my house is one level and I can vacuum the 40 foot long great room, the bath room and the office at the same time.

I’m not sure why I started out talking about my roomba except to say that as I’ve gotten older, it makes sense to find ways to make our lives easier.  I still have a full time job and I’m not ready to give it up, so I can’t get to house and yard work like I used to.  Mr. and I know that we really need to hire landscapers to help with the yard if we are going to stay living in our home for the future.  I’ve thought about a maid service, but the roomba helps out and our house is small – I can keep the house fairly clean.

I just ordered a telescoping window cleaning set that was marked down to 1/3 the price. It hooks to the hose and helps clean the windows while you stay on the ground.  I can definitely use a tool like that.  Now if only I can find one that will clean the gutters!

I’m feeling good.  The knees are really almost pain free.  I’m walking about 7000 steps a day and haven’t had a chance to increase it.  I need to carve a little more time out of my day for walking to get to 10,000.  My RA is better, but I still ache in the shoulders, wrists and fingers each morning.  Increasing my dose of Methotrexate has definitely helped ease the RA pain.

I’m glad I’m feeling better because Mr. has lyme disease.  Sadly his is the classic misdiagnosed case.  We live in the woods.  There are ticks everywhere.  He’s had tick bites and has found them on him, but never had a classic bulls eye.  He did have a rash last year that the doctor said was excema but we don’t think that now.   He’s felt lousy since February and we kept asking the doctor about lyme.  He had several negative lyme tests back and our primary care sent us to the cardiologist, the urologist, the neurologist and then wanted us to see a rheumatologist.  We saw a lyme specialist instead who said that the mainstream medical community is missing the boat on lyme.  According to him, it’s an epidemic and they won’t acknowledge it exists unless you get a positive lyme test.  The lyme test protocols are 40 years old.  The disease doesn’t follow the same pattern.  It’s very frustrating and debilitating.  Mr. started an antibiotic, supplement regimen and we are hoping for some improvement soon.

That’s my update for today.  It’s raining hard here so I can do some work inside and read my book about Lyme Disease.  Have a great day and weekend friends.

Mid Summer update

View from lunch yesterday in Stonington borough in CT

Tomorrow is 11 weeks since my second knee replacement and 22 weeks since my first.  Feeling good.  I just went on a walk with the dog and realized that I was at a normal walking pace.  It felt good.  I’ve been doing 6000-7000 steps per day and hope to start upping that a bit.  At this point, the most uncomfortable thing I do is stand still.  When I stand still, I feel pins and prickly pinches in both knees.  But otherwise I’m moving along very well.  I went out in public the last 2 days wearing shorts.  I’ve decided I don’t care about the scars.

My RA?  I wish I could say it was better but it’s not.  I’m still very achy every day and mornings are tough.  I saw the rheumatologist this week and he suggested increasing the amount of methotrexate I inject each week.  Today was the first morning I tried that.  We shall see. The dose I was giving myself before wasn’t lasting the week so that I would dose a day or two early, which didn’t thrill my doctor.

The stomach upset that comes with restarting Xeljanz XR has mostly stopped, so I hope that I will soon feel the full effects of the medication.  The doctor said that 2 major surgeries was probably a shock to my system and my immune system is a bit out of whack.  Good point.

Happy 4th!

Happy 4th of July Everyone.  I was fortunate enough to have a 4 day weekend since our company closed yesterday.  What a terrific time to catch up on rest and pay a visit to my parents and some friends in NH.  I hadn’t been there in 3 months, which is a long time for me to be away.  We had a nice dinner with Mom and Dad one evening, then we had a dinner party to attend with 10 ski friends which was especially nice.  Mr. Phat and I have both felt a little disconnected from our ski friends.  Hopefully we can be able to participate in some late season spring skiing next year.

I’m 8 weeks and 1 day past the second surgery.  Yes, I’m very slowly getting better but I still have brief episodes of severe pain in the knee and ankle.  The stiffness is subsiding a bit, but I’m still frustrated.  And I probably shouldn’t be.  I just took the dog on a half mile walk.  I’m not sure that’s common for someone at my stage of knee replacement.  I’m trying to move more every day.

My father has had his knees replaced.  Several times.  He did tell me that the pain will come and go for a while with seemingly no reason why it hurts.  That helps a bit but not a lot.  I want to be better now.

So speaking of movement, I’m going to go out and pull some weeds in the yard for a bit.  They’ve really taken over and I’ve been slacking.

Enjoy your day!!

Rainy Saturday

The summer rain is falling pretty hard this morning.  I hear it on the skylights.  I’m very happy for the rain because I don’t feel like I have to rush and do anything.  Rather I can lounge on the couch over coffee with my computer and give you an update on my knee and my RA and my weight.  After all, this is a blog that started about an overweight, 50 something woman with RA.

After the pity party post from 2 weeks ago, I did rally.  I always rally.  As a matter of fact, one of these days I’m not going to be able to rally, and I wonder what happens then.  I’m back at work and it’s exhausting and painful, but I manage to get through most of the day.  The knee seemed to be at a standstill for a time, and as a matter of fact last week one morning it got excrutiatingly painful again and I went to see the doctor.  I could barely walk into his office.  It was 30 minutes before he could see me in which time the pain and inflammation subsided a bit.  He told me that it was going to take time and patience and maybe I was doing too much and had gone back to work too soon.

Well you tell that to my clients, but I did listen to him and I’ve moderated a bit.  I make sure to elevate and ice my knee regularly.  I’ve worn the compression sock occassionally which helps.  I also had a huge revelation.  Because of the pain and discomfort and my inability to sleep I’d been taking 2 advil pm’s at night.  Which is a blood thinner, so I wasn’t helping my situation in the least by doing that.  The morning I ended up back in his office I had also taken 2mg of Prednisone to put the RA at bay and I believe that contributed to the pain and inflammation that morning.

I’m walking about 5000 steps each day, trying to get the right blend of activity and rest.  I’ve started doing mini squats to help strengthen my thighs.  I swear that some day soon I’m going to wake up and feel like I did before this bleeding episode.

On a lighter, funnier note, this week was wellness day at my office.  My company participates in wellness programs at work and in order to get the preferred co pay levels, I am required to participate.  I have a Virgin Pulse app on my phone that I track certain items with, I do competitions with coworkers and read helpful hints each morning.  Participating employees must complete a health screening either at their doctor’s office or at one of the screening days at the office.  So I did that this week.  My glucose and cholesterol were great!! My blood pressure was a tad high but I was in pain that morning.  However, I’ve lost 20 pounds since last year.  I knew I had lost weight, but didn’t know how much.  I was pretty psyched about that.  However, the BMI chart states that I am still obese.

Sigh.  I can’t win.  But perhaps I can lose 20 more by next year and get below 30 for my BMI.

Have a nice week everyone.  Stay strong and positive.

I’m not Wonder Woman

I’m done.  Really, that’s how I feel.  I’m totally done with sitting on my couch, being in pain, burning incisions and watching life pass me by.  I expected to rebound from last week’s setback a bit quicker than I have.  I still have major pain and stiffness in the newest knee that was doing so good until the joint filled with blood.  I have taken a couple of longer walks, but the knee is still stiff.  By yesterday I felt like I just wanted to have a good old cry, but I didn’t give in.

My return to my RA meds was delayed by a week due to the setback last week and that hasn’t helped.  I can manage three weeks off the meds, but then after that, the pain is excrutiating and it takes several weeks for the meds to kick back in when I restart them.  I started them Thursday, so they won’t reach full effect for another week and a half at least.  Which means the pain in my joints in the morning is strong.  I thought the knees were the worst of the RA joints, and replacing would rid my body of RA, but that’s not the case at all.  My shoulders, wrists and fingers hurt daily.

The weather hasn’t been conducive to someone with inflamed joints either.  It’s been raining like heck here for 2 weeks.  The morning might be sunny, but then the rain comes.  Today and tomorrow are just rain.  No sun.  I felt better when I saw two friends post on facebook last night about pain in their joints due to the weather.

Yes, I’m whining.  It’s totally not my style.  I promise this is the very last of my whining.

Three week mark

image of total knee replacement

 

I hit the three week mark from Surgery 2 days ago.  I had a setback over the weekend and wasn’t sure if I wanted to post about it, but decided I would.  Maybe someone else has had a similar issue.

I had the staples removed last Thursday and felt great.  My doctor was impressed with the range of motion and how good the scar looked.  He said I was healing really well and to keep it up – keep moving and walking.  Which I tried to do, but Saturday morning I was a bit lethargic and just didn’t feel right.  I told Mr. Phat that I was going to spend the afternoon on the couch while he spent a couple hours working.  Shortly after he left, the knee stiffened up and the pain started.  And kept coming, and coming.  Very strong pain.  Mr. got home about 90 minutes later and we decided that he would drive me to my surgical hospital.  Unfortunately I couldn’t move at all, the pain was excrutiating.  Instead we called the local town ambulance and they arrived quickly.  They loaded me, screaming in agony into the back of the truck and then before we even left they put in a IV and gave me some pain meds.  They couldn’t take me to the surgical hospital because it’s over state lines, so they took me to the local ER where I got very good care, but they wouldn’t do much beyond Xray and blood tests because they wouldn’t interfere with another doctor’s surgical sight.  The doctor in that ER suggested that it might be infected, in which case the new replacement joint would have to come out immediately.   They conferred with my doctor over the phone on Saturday evening, medicated me again, put me in Mr.’s car and we drove the hour to the other hospital.

Naturally I focused on infection because I had started back on the RA meds that week – one injection of methotrexate and 2 Xeljanz XR pills.  Could that little bit have brought on an infection?  I had taken my temp each day and never had a temperature, so I tried to think positive.  The thought of a third knee replacement surgery in 15 weeks was more than I could handle.

My surgeon saw us by 9:30pm, aspirated some of the fluid, discovered it was mostly blood and said it was most likely a hemarthrosis, which is bleeding into joint spaces.  My surgeon had requested that I take 2 baby aspirin daily from the day of surgery until the day the staples came out.  I’ve taken 1 aspirin for many years on advice of my Primary doctor, but 2 proved to be too much and it thinned my blood too much, causing the bleeding into the joint.

I spent the night in the hospital for observation while waiting for the test results on the aspirated fluids, to be sure there was no infection present.  Thankfully, tests showed no infection.  No surgery necessary, just some ice and rest.

I’ve been home since Sunday afternoon, back on my perch in the living room on the sofa.  I’m tired of being here, but thankful that this will resolve on it’s own with time, rest, and ice.