Author: Mary Mann

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 …

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.                                                                                       …

Adapt and survive definitely not easy

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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. …

A few symptoms of RA

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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 …

Methotrexate Injection

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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 Wipe off top of vial with alcohol Remove covers on syringe Draw back on the syringe to add about .5 ml of air Insert needle of syringe into vial Push in the air(avoids med leaks) withdraw the correct dose of your medication( …

Rheumatoid arthritis progression attitude

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Rheumatoid 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 …

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 …

Yep, RA is progressive

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During 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 …

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 …