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RA tools-Massage

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In the proper spirit of being the manager for my RA, I thought about what tool I could use to help manage my RA.

Top on my list was massage:  Helps the pain-tense muscles to relax. Stimulates the lymphatics. And best of all is a thoroughly relaxing experience.

Today I had an hour massage at ABQ Medical Massage Therapy. It was an Oncology Massage. I have several cancers as well as RA and they do open a few doors. The massage was given by Sean, a senior student.

I was directed to a quiet room. Asked if the room temperature was okay. Offered water. And directed to disrobe to my comfort level. I go to my panties. Lay down on the table which was warm and cozy. Covered up with a sheet and a light blanket.

When Sean returned, he adjusted my head pillow and placed a pillow under my knees. Quiet music. Sean worked his magic as he worked my body into relaxation. Peaceful bliss. I felt pampered and happy.

When I was diagnosed with RA, I could not envision a massage. My body was wracked with extreme pain. It would not have been a good time.

Now that my medical team is doing all they can to manage my RA, I am doing my part with slowing down my life, managing my relentless symptoms, focusing on good food, staying in motion.

The massage was an indulgence. I had that very good feeling you get when being given a treat. Very nice. An experience each person with a painful chronic disease needs in her life.

I had decided to make the call. I showed up. I was rewarded. Try it.

This magical experience was $20 plus a $5 tip. An affordable indulgence.

I had a very good rest of the day.

RA: how to cope with more bad news

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RA: how to cope with more bad news

 

For 80%, RA will be a progressive disease.

  • That means for those who are being drug managed, the drugs will eventually not work anymore.
  • That means for those lucky enough to have remissions, their disease will flare and incrementally get worse.
  • That means for those with constantly active inflammation, like myself, the disease will continue to get worse.
                    This week my bad news is that my disease is getting worse                                                                           and there are no more magic pills.                                                                                                                            And according to my oncologist, lymphoma is a big worry.

I felt blindsided. Discouraged. Tired of being in constant pain. Not interested in being a professional patient. Embarrassed about being chronically ill. Lost. My world had already crashed, now what?

What are my choices?

I could withdraw. I could become cynical. I could give up. I could be very depressed.

That sounds awful!

                       I could remember that RA is a disease that needs to be managed.                                                              I could be confident that I can adjust to my next step.                                                                                                                       I always have.                                                                                                                 The alternative to wallow is just not a choice for me.                                                                         I have been anxious, distraught, and uncertain this week.                                                                I am kind to myself and allow this mourning period. But Then…

                                                                 Enough, already!

I have an underlying confidence that I will be able to cope and then thrive.                                         I always have even though it sometimes takes a few days to re-center myself after the bad news.

I had to reacquaint myself with the concept that  RA self-management is key to RA survival.

So I revisited a favorite book.

The First Year: Rheumatoid Arthritis, An essential guide for the newly diagnosed, by M.E.A. McNeil was the first book I read after my diagnosis. I leaned many things from this book that still serve me well.

  1. Accepted that I had RA. Life needed to be lived with RA on board.
  2. Determined to do what it takes to get better. This is bigger than it looks.
  3. Manage my own disease and make a plan.
  4. Assemble my RA team understanding that I am team captain: excellent rheumatologist, pharmacist, physical therapist, podiatrist, pain management specialist, palliative care nurse plus others as needed. I consider my oncologist as part of my team.
  5. Keep a journal and a pain log. It is amazing what you will forget. These tools are helpful on many levels.
  6. Learn to accept the unpredictable nature of RA. No regrets. No guilt.
  7. Manage pain. During the times when my pain level is not acceptable, I put myself on a regular Tramadol schedule. Doesn’t get rid of it, but helps. No guilt. No worries. It is about managing my disease. When I feel a little better I go back to an as needed schedule.
  8. Keep those joints flexible and muscles strong enough to help prevent joint damage. Tai Chi, gentle yoga, range of motion exercises, light weights routine. Keep the heart and lungs going just by walking. This is tough for me as my feet can be in extreme pain. I still move.
  9. Eat as wisely as I can. This can be tough with the nausea associated with the drugs. I have found that fruit makes a good substitute for pure sugar.
  10. Massage, mindfulness and supplements work for me.
  11. Keep connected to family and friends. Reach out.

 

I clearly remember that my mind can think only one thought at a time. I am doing my part in my RA management.  I also take my pain medicine when I need it and rest as I need to.R I can now set RA aside and spend my time and mental energy on things I enjoy. I reread Preston and Child’s Pendergast series with a cup of coffee all the while feeling lucky that one of my favorite things to do is read. I do love spending leisurely time with friends whiling away the hours in good conversation.  I love living with my son.

So bad news is done and absorbed.  We all need the time to absorb life changing events. Because it is only then that we can move on.

 

Here’s an idea. It is adapted from Sandra Bullock’s movie 28 Days:

After the worst of RA fatigue has lifted, consider this. Get a plant. Keep it alive and be able to handle the maintenance. Next get a Betta fish like my Maxie. Keep it alive and be able to handle the maintenance. Next get a mature, loving cat, such as my Antoine. This is a good place to be. Enough maintenance. Big loving return. Hate cats?  Consider a mature low energy dog. Maybe a bulldog. Not kidding.

Adapt and survive definitely not easy

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RA Just sayin

You might wake up well rested, feeling pretty good. Out of bed.  Start moving.  Your middle toe starts hurting.    A piercing pain shoots through the bottom of a foot.  Just keeps going until every joint in your body in inflamed and in pain.

All had been well this last week. Lots done. Exercise class included. Pain level at a simmer. No need for the narcotics. Pleasant.

Then blindsided!      Unpredictable!    Discouraging!

Now,  it is just hard to exist. Fatigue has joined the rest.  Fatigue feels like an overwhelming exhaustion that makes thinking or doing hard to do. Just simply surviving is hard to do. Each of those joints supporting the 28 bones in each foot cry out for attention. Their chorus is joined by the joints supporting the 27 bones in each hand. Then there are the ankles, the wrists, the shoulders, elbows, and the joints  of the chest bones.

To stop is to adapt. There is no choice, not really.  Time for a rest day, a veg out day, time out.  Time to take those serious pain meds, a hot shower, favorite foods.  A good day to watch movies, read a book, a chill day. Your body demands it only because it needs it. Time to slow down.

This is part of the RA lifestyle.  Adapting means accepting the days when you need a chill day.  That is a hard adaptation to make.  But, It is part of your new life with RA.   Surviving is understanding that pain needs to be managed.  It means that you need to plan the best pain management program to prevent as much as possible a total meltdown.

Managing a flare also means going with the flow of the situation. Rest in a flare. It is time to take care of yourself. It is also a time to understand that life will be better.

The rheumatologist may need to tweak your meds, which don’t work forever.  You may need to tweak your lifestyle. More planned rest. Less exhaustion. Massage. Support groups to learn about coping.  Physical therapy. Chair yoga. More entertainment. Movement.

Team leader back in the saddle. Oh, darn. Adapt and survive is working.

 

 

A few symptoms of RA

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RA Just sayin

The only certain thing about Rheumatoid Arthritis is its unpredictable nature.

It affects each of us differently and our response to treatment is also unique.  It is  a disease that is considered hard to diagnose. The one who can do it most efficiently is a rheumatologist.

Characteristic of RA is small joint involvement.  That is why the joints of the fingers, hands, toes, feet, wrists are frequently affected.

Also characteristic of RA is bilateral involvement. That is why the middle finger of the left hand and the middle finger of the right hand might be involved.  Bilateral. Both feet. Both hands. Both ankles.

I had problems with my feet for a long time. My primary doctor thought I was too old to have RA. Treatment was delayed and now I have foot damage. I have a hard time walking.

When my RA became extremely acute, the pain started in my left shoulder. Soon both hands as well as both feet were affected. And on it goes to most of the joints in my body.

How did yours start?

 

Methotrexate Injection

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Methotrexate Injection

Methotrexate Injection

Why injection?                                                                                                                                            To avoid side effects or to have more of the medication absorbed by the body.

  • There is 25 mg/ml of medication
  • The syringe is either tuberculin or insulin
  • Both have a one ml capacity
  • Both have very thin needles

Have all your supplies ready

  • Vial of methotrexate, syringe, alcohol swab.
  • Also access to your upper belly or outer thigh.

It’s easy as this

  1. Wipe off top of vial with alcohol
  2. Remove covers on syringe
  3. Draw back on the syringe to add about .5 ml of air
  4. Insert needle of syringe into vial
  5. Push in the air(avoids med leaks)
  6. withdraw the correct dose of your medication( mine is 25 mg or 1 ml so I withdraw up to the 1 ml mark). Tap out the air bubbles.
  7. Pinch a bit of your skin, belly or outer leg
  8. Wipe with alcohol swab
  9. Insert the needle(think dart)
  10. Push plunger to empty
  11. withdraw needle
  12. Wipe skin if any leaks.
  • There are no blood vessels in these particular areas that you need to be concerned with.
  •  Put your vial back in its box to protect the medicine from the light.
  • Put your used supplies (syringe, DO NOT RECAP THE NEEDLE, and alcohol wipes) into the sharps container
  • This is awkward at first(new skill) but you will become expert after two or three administrations.

Rheumatoid arthritis progression attitude

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RA Just sayinRheumatoid arthritis sticks to me like glue.  Severe.  Persistent. Progressing.    OMG!    I have a tough one.  But then, so do many, many others.  I am alive.  I am grateful.

Life is good.  Every minute of life is a gift.  Believe it or not, the biggest joys in our life happen in our everyday life.  Stop and think about it.  What are the five best moments you have had this week?

Remember, this week your life is ticking by.  Life is now and a daily experience. Love it.

Life has changed dramatically for me.  My pace is about 20% of what it was.    Am I sad.    Not.     Probably  because I am spending  my time  managing my day.  I’m living today.

A lot of the maneuvering is  about energy and pain control.  So life is about balance.  A little of this and a little of that.  Breaking time into chunks. Working on re-potting plants. Then reading a good book or writing articles for a while.  Lucky for me I can do many of the things I love.

When I have lunch with a friend, I always have a great time.  I keep my adventures out of the house to a few hours to avoid severe fatigue.  It helps to set limits.

I love getting letters from friends, especially my granddaughter. I love a good cup of coffee first thing in the morning. I love to journal. I love to see the lovely blend of colors in my weekly flower bouquet. I am thrilled when Baldacci or Preston and Child come out with a new mystery. I love online jigsaw puzzles.  I love movie night with my son.  I love the New Mexico air.  Lots to keep me happy.

I could be mad, depressed and discouraged.  I am not.  Life is too short.  I am human. That means I am  resilient,  creative and joyful.  Just what I’m talkin about!

 

 

 

RA Drugs-Methotrexate

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I take my 10 little pills of methotrexate on Sunday afternoon.  I put the ten 2.5 mg tablets in a little white bowl.  I take them over a 4-5 hour period.  My little ritual makes a major difference.  I have no nausea from the medication.

My first dose was 2/17/2013.  It was 10 mg.  My dose was increased gradually to 25 mg on 4/28/2013.  Nausea is the most common side effect.  I did have some initially  but as long as I followed my ritual,  I was fine.  Additionally,  for the first year I was  tired on the day following the dose.

Low dose methotrexate has been the drug of choice for the treatment of Rheumatoid Arthritis for 30 years.  It is safe and generally well tolerated.   It is a DMARD, disease-modifying anti-rheumatic drug.  It helps with pain and swelling.  It slows the progression of RA over time.

Methotrexate was one of the first products of ” intelligent drug design”.  It was introduced as a treatment for cancer in the 40’s.  It was introduced to treat RA in the 70’s and 80’s.  The treatment pathway of methotrexate is different for RA than it is for cancer.

Methotrexate is frequently used in combination with other DMARD’s and is quite effective when used with the biologics.

I take Folic Acid as a prescription dose daily.  Folic acid helps avoid side effects of methotrexate. I have regular labs that measure blood values, liver and kidney function.  I have normal function.  In the USA it is recommended that a person on methotrexate  abstain from alcoholic beverages. I do. It was tough giving up the glass of wine while cooking dinner. I am fine with it and I still enjoy cooking dinner.

Methotrexate is on the World Health Organization’s List of Essential Medicines, a list of the most important medications needed in a basic health system.

For further reading:                                                                                        Methotrexate (Rheumatrex, Trexel), American College of Rheumatology (ACR)

Old Drugs Can Learn New Tricks, Methotrexate and its mechanism of action,  Bruce N. Cronstein, MD, The Rheumatologist, November, 2011

Yep, RA is progressive

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Mary JoDuring the treatments for my cancers, my RA was uneventful.  Yes, I did have monthly flares that lasted just about 12 days.  Yes, I was always in a simmering level of pain.  I grinned and bore it like a good Irish Catholic girl.  Instead, I focused on surgery, radiation and life changing drugs.  I even completed a cancer rehab program.

One day as I was starting a Zumba class, my ankles screamed in a pain that was the equivalent of trying to dance on joints full of shattered glass. Determined, I tried moving my feet differently (how many ways can you move your feet, you might ask).  After 10 seconds, I realized that it was futile.   I stopped.   Since then, it has been downhill.  It was a steep hill, I might add.

Although I am on Methotrexate (a life saver for me), Plaquenil, (Sulfasalazine did not work for me), meloxicam, prednisone and all the supporting drugs, I am still progressing.  All the little joints in my feet and my ankles are inflamed and swollen.  The swelling has moved into my feet and ankles.  I am so swollen that it is hard to walk. And that is just the joints in my feet.  However, I have no intention of boring you with the rest of my joint assessment.

My point is that RA, in a large number of cases, keeps getting worse.  The drugs eventually don’t work, and the choices of alternatives keep getting smaller.

I had an emergency appointment with my rheumatologist yesterday.  Yes, my RA is out of control.  Time for a biologic (she had been suggesting that we might need to go in that direction for a while now.)   Boy am I ready!  The eyeopener was that with all new drugs out there, my choice will probably be only one drug. Possibly two.  Why?   I had cancer.   I probably still have cancer.   Most biologics are not compatible with cancer.    I did not know this.    Scary thought.

I was given a pneumonia vaccine booster, sent for a shingles vaccine, a new prescription for more pain medicine and lots of labs.  All prep work for the next step. She will track down a clearer picture of my thyroid cancer, discuss options with colleagues and discuss the next step at next week’s appointment.

Phew! I am supremely lucky to have my doctor. She belongs in the Doctors Hall of Fame.

2014

18 months after diagnosis

Mojo and down days

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My mojo is rising today. Feels quite good.

As a professional photographer my skill set has been set aside for the last nine months. I still have not set up my tablet.  I have been making images around me and now I’m starting to use a few of my Photoshop skills. Feels really good. Soon I will have my Wacom tablet set up and I will dive deeper.

Yesterday was tough for me. The frustrating thing about RA is the randomness of its systemic affects. I felt flattened and any effort was difficult.

Awhile back I learned  a few RA tips from  WebMD(www.webmd.com/rheumatoid-arthritis). An important tip was to break activities into blocks. Alternating physical activity with restful activities is always helpful on a down day. Sometimes more is done and there is less frustration. There will be pleasures in reading a good book or in catching up with favorite programs and still doing those necessary little chores.

It is a helpful process for all of us.

Rheumatoid Arthritis a training ground for cancer

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Rheumatoid Arthritis: A training ground for cancer. That is how I think of it.

When I was diagnosed last year with RA, I read everything I could find on the subject. I was trying to figure out where I stood with the disease.

My favorite book was M.E.McNeil’s The First Year Rheumatoid Arthritis. The value of this book is that it offers an approach, a way of thinking, to come to terms with a chronic, progressive disease. It gave me the same help when I had to come to terms with the diagnosis of two different cancers.

• I journal regularly, expressing myself and establishing a timeline.
• I think of my medical providers as my team that does include my pharmacist, physical therapist as well as the 6 specialists that I am seeing currently.
• I see myself as the head of my team. I have confidence in my team. Each has a role. My role is to be proactive, to do my part.
• I am able to accept my current situation, relaxing into it, not fighting it.
• I have learned to enjoy what I have right now, today, this minute.

Cancer starts from one single cell taking a wrong turn. RA starts with pain and fatigue, probably more than one cell taking a wrong turn. Both take on a life of their own. Learning to roll with the situation is no mean trick. Situations are always changing.

I have never asked, “why me?”. It just is. I am rarely angry. I do flare just a little when I hit a new bump in the road. I reset myself and carry on. I have been discouraged. I have been scared. I am my own cheerleader so have excellent self-talk. It really helps to keep that talk positive. Be kind to your body.

My future is quite uncertain. Less certain than most. How do I live with it? I clearly focus on the right now, not the past, not the future, but right now.

May 2014