All posts tagged: Pain management

RA Journal 10-13-16

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It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep. Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good. Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is …

Methylprednisolone and RA

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Methylprednisolone (WOW, an impressive word!) is served up in a package of 21 four milligram (mg) pills (Medrol Dose Pak) with specific instructions as to when to take each pill. One time a nurse told me to start the pack the next day as the instructions start before breakfast and that would be the only way I could follow the instructions. I would have to wait through the night before I could start resolving my problem. This time around I saw written on the package that all six tablets in the first row for the first day should be taken on the day you receive your prescription even though you may not receive it until late in the day. All 6 pills may be taken at once on the first day or divided into doses for the remainder of the day. I have had this prescription twice for inflamed salivary glands after thyroid cancer treatment and twice for RA flares. I call it a miracle drug as it is so effective. My joints still hurt …

Managing RA and commitments

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I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it. Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when the pain and the fatigue of RA increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together. The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept …

The challenge of Feet

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My rheumatologist sent me to a podiatrist, a foot doctor.                 Charming man. Once a client of mine.        X-rays were ordered, the podiatrist way. Standing. Weight bearing. Three views each.  For the third view I climbed steps  and was x-rayed  at foot level.   A  much better test than the standard foot  x-rays. Results: persistent degenerative changes with in the feet bilaterally. I admit that this was expected. What happens next?  My doc said surgery is not the answer.  As my feet get worse he feels steroid injections would be helpful. Now it is important that I wear shoes that fit  well and offer good support.  I should also wear special inserts (Motion Control performance insoles by Prothotics). I got the inserts first.  They are so much better than anything you will find at Target or Walmart. They have support for feet in areas that are thinning in RA. He suggested our New Balance store or REI.  New Balance was closer. They fitted the inserts and fitted …

Have you ever felt stranded?

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Have you ever felt stranded?  Sick …Painfully so…But did not know who to call. Maybe too sick to figure it out. This happens a lot to those of us with autoimmune disorders. I am seeing many doctors, each a specialist who oversees a section of my body.  For me, I have a rheumatologist, an oncologist, an endocrinologist, an ENT Doc, an internist and a podiatrist. However, there is no one who looks at the total me. This week I am in trouble. Things just are not working well enough. The protocols that are to be followed when I am in trouble are not working.  What do you do when your painful issue does not fall into the neat little slot of a specialty? When you are plainly worried that all is going to hell?  Who do you call? Unfortunately, not GHOSTBUSTERS. Here’s what I did. Then I will tell you about my remedy for my next crisis of indecision. It was decided through C-T scans and visits to my endocrinologist and an ENT Doc that …

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. …

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 …