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

roomba

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.

Spoke too Soon

Saturday I posted to express my appreciation for all the support I received from Phat50Chick.  Sunday morning I woke early and once again the left knee was excrutiating, very swollen and I couldn’t put any weight on it.  Mr. Phat ran to the pharmacy for another Medrol pack and I started my second course of prednisone in less than 2 weeks.

This time I will admit to not having felt progressively better each day.  It’s been very slow to improve.  Today I’m better, but I still have swelling, pain and still am limping, even though I try not to.  It dawned on me last night that I had lyme disease last summer and I wondered if I had a final follow up blood test to determine that I was no longer fighting it.  I called my primary care doctor this morning and he wanted me to come in for a blood test, but then realized I was on prednisone and so I can’t have the blood test until 2 weeks after stopping taking the pred.  Which is the 29th of July.  If I can go that far.  I did find this ugly graphic on the CDC website but it’s appropriate.  The right hand picture is me.  One truly fat, overswollen, can’t straighten out or bend it, knee.

medical illustration of Erythema migrans, medical illustration of Bell's Palsy, and medical illustration of an arthritic knee

Maybe it is RA.  Maybe I’m having a flare in my knee.  Maybe the Enbrel has run it’s course and I have to switch off it.  I have an appointment with my rheumatologist next week to discuss that possibility as well.  I also have a consult with a acupuncture group.  Because I’m curious about acupuncture.  But maybe it’s not RA???

As I’ve always said here on Phat50Chick – you have to be your own advocate.  Your own doctor.  Because I have RA, the ortho and rheumy didn’t think about Lyme, and my Primary Care didn’t really either.  I had to be the one to remember the lyme and look it up and think – Huh?  You can’t be too sure.

I will keep you posted.