Critical Looks

It is such a beautiful fall day, I decided to go into town for a few things.  The sun is shining, the breeze is light, and the temperature is in the seventies.

I have a new puppy, Sadie, who loves to go with mom.  I put her in her booster car seat, and away we went to "slay dragons".   Sadie was happy.  I was happy.

We made three stops.  First on the list was Wal-mart for a few everyday household items.  Our little Wal-mart permits dogs in the store as long as they are in the cart, or the owner is holding him or her.

Sadie loves looking at all of the people.  She sniffs the air.  Her ears perk up as she looks all around.  It is a new world for her, and good for her socialization.

As often happens, I saw many people I know at Wal-mart today.  I greeted them warmly.  It is such a glorious day.  I was in such a glorious mood.

As I turned to head toward the checkout counter, my eyes caught view of one of my acquaintances.  She had that "look" on her face.  You know the "look" I am talking about.  You catch people looking each other up and down quite frequently. 

Personally, I have always wondered why people do that.  It makes me uncomfortable. 

After checking out, I was putting my cart away, and caught another "look" from another acquaintance.  This one was even more "critical".

I am having a good day today.  I don't need my cane.  I have only a slight limp. Two steroid injections a couple of weeks ago are still in my system.

I know that people look at other people a lot.  I suppose that is "people watching."  Still, the looks I saw today were more critical than most.

I imagine these two individuals were wondering how I could be walking with a cane one day and not the next.  They are puzzled.  I get that.

I wish I didn't get those "looks."  I wish everyone understood AI diseases.  As my late mother used to say, "If wishes were horses, beggars would ride."

In the scheme of things, what does it matter?  What matters is this:  I feel better today than I have in a while.  I am happy.  No one is going to steal my joy!

RA Dancer: Refreshing The Body & The Soul

RA Dancer: Refreshing The Body & The Soul

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.