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.

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Almost 2 weeks post op

Tomorrow will be 2 weeks post op for me.  It’s gone by quickly even though at times the minutes seem to be like hours.  Overall I’m doing well.  Progressing.  The surgically repaired knee is now my Good Knee.  My Strong Knee.  It’s stable and sturdy and feels good to walk on.  To that end, I walk mostly unaided these days.  I’ll use my cane overnight or for the first few steps in the morning, but otherwise it is not necessary.

My hurdle has been the other knee which no doubt will be replaced in the future.  Being off the RA meds since the beginning of February has caused the expected flare.  In my hands, wrists and the other knee.  The other knee formerly known as my good knee.  The pain has caused me to cry for a few moments most days.  I get overwhelmed, tired, behind on pain meds or just feel a bit sorry for myself.  I sob for a few moments and then rally.  Because that’s what RA has taught me to do.

I was supposed to stay off the RA meds until after the staples were removed, but I will confess to starting the methotrexate 4 days ago, and the Xeljanz 2 days ago.  The swelling in the new knee has diminished, my physical therapist says I’m doing great – I did climb a set of stairs yesterday and walked down the street and back up (it’s a hill).  Today is the first morning I’ve not cried since surgery.  Yes, I was stiff and sore, but the pain seems manageable and the RA flare is being extinguished.

I’ve had incredible support from Mr. Phat.  I couldn’t have gone through this without him.  He’s held my hand, cooked meals for me, and most importantly is my Iceman.  He keeps my icing mechanism full – he says I have a $4 a day ice habit and we’re not even making margueritas.  My parents drove down over the weekend for a visit which proves that you can be 55, but you’re still a daughter.  Mom needed to see for her own eyes that I was doing well.  I’ve had tremendous support from my friends and colleagues at work, which has helped me go through this challenge.  And my ski group, Team Cannon, left for the annual trip to Switzerland over the weekend.  I know that my spirit went with them.

Stay tuned for more updates.

‘Talk About Your Medicines’ Month

So I was recently approached by a woman that is the Community Awareness Coordinator with the American Recall Center.   She helps to educate individuals on recall updates but also is an advocate for medicine safety.  October is Talk About Your Medicines Month and she asked me if I would do a post for her about my medications.  She gave me a guide with some talking points in the event that I needed assistance with a topic(s).  After giving it a little thought I knew that I had a great blog post regarding medicine safety.

As someone with Rheumatoid Arthritis Disease, aka RA or RD, I do take several medications to calm my immune system, reduce inflammation and help with pain.  One of those medications is Methotrexate (MTX).  I’ve taken it since August, 2001.  Initially I started taking it once a week in pill form.  Several years ago – probably around 2011, I discovered that it came in an injectible form.  I’d been having some issues with being sick from the pills and I asked my rheumatologist about it.  He thought injecting MTX was a great option for me since we’d been splitting the 5 weekly pills of methotrexate into 2 doses during the week instead of one dose as a way of making it more tolerant for my system.  What I discovered was that instead of feeling sick one day per week, I was sick two days per week.

I started on the injectible form during the summer and immediately noticed how much better I felt!  No more sickness.  And because I wasn’t being sick and purging the medication, I started feeling much better because I was absorbing more MTX.  The RA definitely retreated and I needed less pain meds and less anti inflammatories.  Everything was fine until earlier this summer when  I started getting sick again.  So much so that I actually left work at noon one day and went home sick.  I don’t do that often.  A couple weeks later the same thing happened and I was very sick again.  The most ill I’d been since started the injectible Methotrexate.

I went into my medicine supply to look at the little bottles that I’d been given.  I had a number of different sizes that the pharmacy had given to me for several months.  I compares all the bottles – from the old supply and newer doses and I noticed a difference in the small print on some of the bottles.  Over the years I’d always had MTX that had preservatives in it.  I could reuse the same bottle a number of times and store it in the cabinet in between doses.  I noticed that some of the bottles said “preservative free” on the label.  I had never been given this type of med before but I suspected that if I was re-using a bottle of preservative free meds, I could be getting sick.

I stopped at the pharmacy the next day and the pharmacist confirmed that I had been receiving MTX with preservatives in it since starting to take it in 2001, but for some reason the form had changed recently and while the lettering on the bottle noted the change, nothing in the notes on the script explained the change to the meds or that I wasn’t supposed to reuse the bottles.

Problem solved.  Lesson learned:  Be very observant about everything as it pertains to your prescriptions.  Ask questions.  Trust your instincts and most of all, remember that it’s your body and you will definitely know if something is wrong.

Rheumatoid Awareness Day

As a person with Rheumatoid Arthritis I’m very happy that they have created an awareness day for us, and they are renaming it Rheumatoid Disease.  RD is different from Osteo Arthritis and it affects other parts of our bodies besides the joints.  So as to stop confusing the two, they’re renaming it Rheumatoid Disease.  Often when I tell somebody that I have RA, they’ll say “oh, my grandmother has that.”  Probably what I have is so much different than what your grandmother has.  It’s not your grandmother’s arthritis.

Below I have posted the RD Awareness Ribbon and part of the press release!

RheumatoidAwarenessDay2

Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.  The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease.

I’m very excited about Saturday.  Hopefully I’ll be doing something that my Dr can’t believe I still can do – skiing.  Meantime, it’s Monday night.  Time to inject my methotrexate.  Have a good night all.

Invisible Illness Week – Sept 12 – 18

This is Invisible Illness Week and I thought I’d talk a bit about my invisible illnesses.  Invisible Illness Week was created to bring awareness to those who suffer from chronic illnesses that sometimes don’t seem like illnesses.  I’ve got Rheumatoid Arthritis and struggle with occassional depression.  I had a bout with something that is the first symptom of multiple sclerosis just 10 years ago, but I’ve had a 10 year follow up this week with the doctor and we think it was a perfect storm that created that symptom and it had nothing to do with MS and the symptom ultimately went away.

Rheumatoid Arthritis means that my immune system is overactive and it has attacked my joints, causing swelling and pain.  It does limit some of my movements and causes a great deal of fatigue, but I really try hard to push thru life with a smile and not let it get to me.  I am mostly successful but it’s not without struggle somedays and it’s a very careful balancing act.  Mondays I inject a low dose chemo drug called Methotrexate, Thursdays I take the biological response modifier Enbrel, and each day I take 100mg of Celebrex, some folic acid, a large dose of vitamins and then I need occassional Vicodin to help me get thru my day.  Exercise and movement are so important and on the days that I feel my worst are the days that I really need to put on the sneakers when I get home and walk the dog or ride the exercise bike.

I’ve always struggled with weight – since being a little girl.  Having RA and depression certainly work against me by limiting movement and energy and the medications can contribute to weight gain.  Anti depressants can put weight on, although I only take 1/2 a celexa each day.  Getting back to the gym and doing more cardio should help keep the RA in check, and of course losing weight keeps the stress off the joints.

If you are aware of anyone that has a chronic, invisible illness, they might look healthy and fine, but that’s not always the case.  We struggle to get out of bed in the morning and get on with our day.  Be patient and understanding because we don’t want to be treated special, but we are not like everyone.  We have our unique issues that require a very delicate balance each and every day.