Refreshing The Body & The Soul

I awakened this morning thinking it was going to be a great day, as far as my days with RA go.  My mind was clear.  Everything had crisp edges.  Everything was bright.  Aha, I thought!  No brain fog today. 

Two hours later, I was a completely different person.  The mind fog was back, and it was thick!  Undaunted, I pushed myself to get into my little Ford Ranger truck and drive myself to town.

I live in the country, so “town” is 30 minutes away.  I really wanted a hair cut.  I put haircuts off until I just can’t stand it anymore, and then I am past ready to go.

Methotrexate has not caused me to lose any hair, but the hair it leaves me with is dull and dry as straw.  I use hair products to help, but they cannot work miracles.

I have also been injecting Actemra for two months now.  I may be wrong, but it seems to me that Actemra only compounds the hair “issues”.

So, there I was, driving down a country road, windows rolled down and the wind blowing in my face.  The sun was shining, and I was enjoying the first-day-of-Spring sunshine.

I should have been feeling glorious, but I was only half glorious.  The longer I drove, the more I felt as though I were moving through concrete.  I was stiff.  I was slow.  I was tired.

I made it to town, and managed to sit in the stylist’s chair and not fall asleep as she cut inches of dry hair off of my head.  That, at least, was relaxing. 

I left the hair stylist feeling about the same as when I went in, except my hair was much lighter.  I drove to my husband’s place of employment and picked him up for lunch.  God bless his heart, he didn’t say anything unflattering about my new hair cut.

My husband prefers my hair a little longer, but he understands my dilemma.  It is difficult for me to take care of my hair.  Stiff shoulders and finicky wrists make hair styling such a chore.

My partner of 36 years and I drove to a restaurant that specializes in smoked meats, and had the best hamburger I have hand in years.  Now that I am not out every day working, a good hamburger is a treat.

Again, my husband did not protest, even though I know he eats out five days a week for lunch.  Most of the fare in our small time is also of the hamburger variety.  I am blessed to have such a supportive husband.

After lunch, I drove my husband back to work, and headed home.  I thought maybe I was feeling a bit better, but soon I discovered I was not read for prime time yet.

I took the back roads home.  I didn’t trust myself behind the wheel on the highway.  I had not taken any break-through pain meds.  What I was feeling was simply the heavy, heavy weight of RA fatigue bearing down on my body.

Once home, I took a two hour nap, followed by pain medicine.  I am feeling a bit better now, but still not ready for prime time.

Isn’t it strange how we can feel almost good one minute, and awful the next?  Actemra has knocked down my inflammation markers.

I still have swollen and tender joints, but I was hoping the oppressive fatigue part of our disease would stop ambushing me at the most inopportune times.  Alas, it is not so. 

I know better than to try to fight RA fatigue.  The only thing to do is to rest, and to take pain medications if necessary. 

I did go outside and sit on my porch this first day of Spring.  I removed my socks and shoes so that I could feel the cool porch beneath my feet.

The wind blew through my hair, and the sun warmed my body.  I took a deep breath, and exhaled slowly.  My soul was refreshed, and that cannot be bad for a body that needs refreshed, too. 

Heart Disease And RA: Listen To Your Body

I lost a friend recently.  Officially, she didn’t make it through aneurysm surgery, although she hung on for several days trying to get better.

My friend’s name was Winnie, and she was a very young 75 year-old.  Winnie was funny, smart, and kind.  She brought joy to the world.

The reason I say she “officially” died from complications of surgery, is that we all know how hard RA is on our cardiovascular systems.  I have read several articles and studies stating that most RA patients die from cardiovascular disease.

Winnie had RA for several years.  She was once in a wheelchair.  She battled back from that and was walking with a cane thanks to the new biologic drugs.

Everyone who is living with RA should have a cardiologist consult.  Another dear, dear friend of mine had two stents placed in her heart earlier this week.  She is only 46 years old.

Thankfully, my friend had a “gut” feeling that something wasn’t right.  Instead of attributing her chest pressure and shortness of breath to RA, she went to the ER.

So many of us have more than one AI disease, and we often have other complicating disease process.  It is difficult for us to distinguish between RA flares and true health emergencies.

If you would like to read more about my best friend’s experience with chest pressure and heart disease, please click here.  My friend is a retired RN, and offers helpful information that is easy to read and understand.

In the meantime, please be kind to yourself.  Be well!

Mobility & RA: What Will The Future Bring?

All of us with RA know how it can jump from joint to joint.  Sometimes it waits a day or two.  Sometimes it waits only an hour or two.

I have been dancing with RA for almost four years now.  I know its moves, and I know how to counter.

I find myself at a place now that I do not like.  I have run out of moves. 

RA has settled in both of my feet.  It is dancing around in my joints and in my tendons.

My feet ache.  The arches have fallen, and none of my toes touch the floor anymore.

I tried to tell my rheumatologist in June that Orencia was not working anymore.  She didn’t agree with me until my appointment this past December. 

When Dr M. saw my toes off the floor, she asked if I was ready to switch biologics.  I said yes, and before I knew it, I was holding an Actemra packet in my hands.

I saw a podiatrist before I saw my rheumatologist last year.  The podiatrist just kept saying that I needed to see my RD.

My PCP wants me to see another podiatrist.  She thinks he may be able to inject a steroid to quiet the inflammation in my feet.

And so I sit and wait.  I cannot get in to see the new podiatrist until the end of February.  In the meantime, I am losing my mobility.

I have tried Epson Salt soaks, and they help ease the aching.  I have pain medications, of course, and am thankful for them.

I have Lidoderm patches and various creams and ointments.  All help, but I’m afraid they are only superficial.

I am starting to think I may be past the point of no return.  I hope that is not the case, but it has me thinking.

I have a scooter I use when I am out for an extended period of time. I use the carts provided by grocery stores. 

This is different. I am keenly aware of the progressive nature of RA at the moment.  We shall see what the future brings.

RA & Mobility: Will Actemra Save My Feet?

I am three and a half years into my "official" journey with RA.  Like most of you, I have had RA "jump" from joint to joint.  I've lived through many flares, and I always held onto the fact that the flare would eventually pass, and I would be back to my "RA normal".

What I am dealing with now is different.  RA is attacking my feet and threatening my mobility.

The thought of not being able to walk is weighing heavily on my mind.  In an act of pure rebellion, I did something stupid last weekend.  My husband and I were out and about on Saturday.  I pushed myself to walk.  I didn't use the carts in the store.  I didn't use my cane.

Sunday morning, my feet were so store and stiff I could barely walked.  I slid my socks off my tender feet and saw that my toes were even further off the floor than they were the day before.  Pushing myself to walk was a bad idea.

I saw my PCP this week.  She is concerned because we don't want my feet to go past the point of no return. Dr D has recommended PT for my feet, and a visit with a podiatrist.

My PT will not be PT in the conventional sense.  My Physical Therapist will be using massage, and whatever he can think of to try and loosen the tendons in my feet.  That is our only goal at this point.

My PCP is a gem, and I appreciate her so much.  I have a good rheumatologist, too, but she just doesn't seem to have time to address individual issues.  She has started me on Actemra.  We are hoping this biologic will work well. 

What I want to share with you today is this.  Good rheumatologists are few and far between.  Good PCP's are the same, but it is essential that you have a good primary care doctor to help you co-ordinate your care.

My PCP is my "general".  She knows me better than any of my other doctors.  In addition to that, she understands RA.  An added plus is that she cares!  

Dr D informed me that I have a classic case of RA in my feet. We are hoping that Actemra hopes to slow the destruction.  

It may be a little difficult to see in this picture, but none of my toes touch the ground now. The toe joints closest to my feet are partially dislocated.  

If you develop pain in your feet that does not go away, please see your rheumatologist.  You may need to change DMARDs.  

If your rheumy doesn't suggest anything else to help your feet, you may want to check with your PCP, and perhaps a podiatrist.  There may be things you can do to help your feet while you wait for the RA meds to knock the RA Troll down a peg.

Find A Good Pharmacy & Simplify Your Life!

Let’s face it.  Managing RA can be a full-time job.  Anything we can find to help simplify our lives is a huge plus.

Last week I called my new PCP for a script for a blood pressure med that had expired.  She is taking over all the scripts for my bp and pain meds, and that is a blessing.  Having one doctor write those scripts is much more convenient.

I called my pharmacist two days later to make sure the script was ready, and they said they never received the script.  Thinking that perhaps there was a “glitch” in the electronic script system, I called my doctor again.  Once again I asked them to send the script to my pharmacy.

I don’t want to bore you, so just know that this scenario went on for days.  When I called my “old” pharmacist, I explained that this is a bp med, and must be taken every day.  Not once did they offer to call my doctor’s office.  Not once did they offer to give me a few tablets to take until this fiasco was finally sorted out.

Things have changed at my “old” pharmacy.  They have had a lot of turnover. There are new people there, and they are not yet well-trained.

The people who work there seem so tired and so rushed.  It is not a good situation. They used to know me by name.

I was a frequent customer.  They recognized my little Ranger truck when I pulled into their parking lot.  More often than not, my meds were waiting for me on the counter by the time I made my way inside their place of business.

After my last unsuccessful phone encounter with the “old” place, I called a friend to ask what pharmacy she used.  She made a recommendation and gave me their phone number.

I called my doctor’s office once again, and asked them to send the script to the new pharmacy.  The woman who answered my phone call at the doctor’s office was quite pleasant and told me I had made a wise choice.

Apparently, my doctor’s office works closely with this particular pharmacist.  The woman I talked to offered this piece of encouraging information:   If there is ever a problem with a script, the pharmacy I chose calls the doctor’s office for the patient.  How cool is that?!?

I picked up my script for one of my blood pressure meds today from the new pharmacy.  The woman at the counter was well-trained, pleasant, and efficient.  I was so pleased! 

The “new” pharmacy also gave me a form to fill out and return to them.  Once I have that completed and returned to them, they will change my scripts so that I can pick them all up at one time. 

All of my scripts are in the process of being transferred to my new pharmacy as I write this blog.   I will be filling out that form this evening.

I really don’t know why I didn’t transfer to this pharmacy a long time ago.  They are closer to my home, and they are smaller……….both plusses in my book! 

I love the idea of being able to pick up all of my scripts at one time.  I also love the idea of working with people who really know what they are doing.  They are friendly and good at what they do.  I have just simplified my life!

RA & Your Medical Team: Trust Your Instincts!

Well, here we go again!  I saw my rheumy last Friday…almost a week ago.  I left that appointment more confused than when I arrived.

My rheumy has always been open and direct, and very helpful.  Maybe she was having an off day.

Previously she told me that since I am sero-negative, she uses my CRP to gauge my disease activity.  She also told me that my labs are never super high, but they are higher than “normal”.

Previously, my CRP was 7+.  I tried and failed Humira.  I moved on to Orencia, and my CRP was reduced to a .9!  What a fantastic turn around.

I have been in a flare for two months, and quite frankly, I am getting tired of it.  My CRP is a 10 now, and I am concerned that Orencia is losing its effectiveness.

My rheumy asked why I thought Orencia was failing.  I explained that all of my joints are tender, my fatigue has increased and my CRP is 10.

She just brushed all of that off.  Her take is this:  RA flare, Fibro flare, and severe osteoarthritis in my back. 

Her solution:  Cymbalta, which I cannot take because it raises my bp.  Her second solution:  Celebrex.  I explained to her that it raises my bp.  She wasn’t impressed.

Came home, took Celebrex, which helps a whole lot. Tried it for four days, and watched my blood pressure steadily climb to a dangerous level before I called my PCP.

Thank goodness for good PCP’s.  Dr D called me back and said no more NSAIDS.  She had reviewed my chart and saw that I was maxed out on three of the four bp meds I take.

Moral of this story:  If you feel as though your doctor…any doctor…is not taking you seriously, do not just blindly accept his or her proclamations.  If you have a nagging feeling in your tummy about a treatment option you have been offered, trust your instincts.

You may need to get a second opinion.  If you are lucky enough to have a good PCP, as I do now, you can check with him/her. 

I have come to realize that specialists only focus on their specialty. They don’t treat the whole person, as they should.  That attitude is a dangerous one for those of us who have more than one serious medical condition.

My blood pressure was over 100 on the bottom, when I called my PCP.  And that was in spite of taking my prescribed bp meds.  That is a dangerous thing.  Bottom line:  You are the most important person on your medical team.  Never doubt yourself!

Things That Make You Go: Hmmmmmmmmmmm

I saw my rheumy last Friday.  The appointment is a bit of a blur, really.  The brain fog was heavy that day.

I thought for sure Orencia had failed, but she does not agree.  Not yet, anyway.  She told me the CRP test my PCP ran was “high sensitivity”.  She explained that is used by cardiologists to determine heart attack risk.

She further explained that the CRP test she uses to gauge disease activity showed my level to be a 10.  Now, my level has never been above a 7 before, but she didn’t mention that.

She also didn’t mention that my CRP was .9 right after I started Orencia.  It was working so well!

I was a bit confused, so I asked her why all of my joints hurt if Orencia is still working.  Her conclusion:  I am in an RA flare, a Fibro flare, and the degenerative arthritis in my back is causing a lot of pain.

My rheumy does not buy the diagnosis of my orthopedic doc of spondyloarthropathy.  She wants to determine that herself.  All I know is that every vertebra on that x-ray was dotted in bright white.  My ortho says that is inflammation.  My rheumy says it was probably OA. 

Isn’t it wonderful when you get caught in the middle between two doctors?  Not a good place to be.

My rheumy wanted to prescribe Cymbalta, but I explained to her I had tried that in the past and I cannot take it. It raises my blood pressure way too much. 

She also was stressing to me the importance of sleep.  I guess I looked tired.  No kidding!  When a person is in a lot of pain they do look tired, regardless of the amount of sleep they are getting.

I have an appointment with my PCP in three weeks, and I am looking forward to it.  I am going to be completely honest with her.  I am confused, and I need some help sorting this out. 

My back is still very painful and if I “push” it, my legs just stop working.  It is more like a muscle thing than a nerve thing.  My muscles just get sluggish and refuse to go.

I was also stunned at my rheumy’s willingness to write a narcotic pain med script for me.  I didn’t ask. She asked me if I had enough T3.  I am shaking my head here.  Something is up.  Perhaps my PCP will help me figure this all out. Stay tuned!