March 2014 – SeasonedSistah

Awesome Side Effects

In the more than 60+ years of taking medications, I never experienced “side effects.” But, since 2008, I have faced several serious health issues that related to “medication side effects.” I always knew there were side effects to medications. I just never bothered to check. Thinking, the doctor prescribed the medication, so it’s okay.

In a ten-year period, I took four different medications to treat conditions, which later turned into creating new conditions. After the first incident, I should have learned a lesson. Well, I didn’t.

First Incident – Humira

About ten years ago I was prescribed a weekly self-injection of the drug, Humira, to treat MY Rheumatoid Arthritis. The “risks and benefits” expert in the family was Hubby’s 83-year-old aunt. For more years than I can remember, she wouldn’t take a prescribed or over-the-county medication without researching the “risks and benefits”. A long-time RA survivor, I asked her what she thought of this drug. And Auntie said, “There are too many risks.” I listened. But, it didn’t change my mind.

During that time, I made bi-monthly visits, to the hospital for a four-hour infusion of Remicade to treat MY RA. The “benefits” of the weekly at-home injections of Humira versus a four-hour stay at the hospital outweighed, in MY mind, any “risks.”

Five years later, I was diagnosed with Breast Cancer which according to the literature and confirmed by both MY then treating oncologist and rheumatologist was due to the “side effects” of Humira.

(Thankful for the Humira medication, which significantly reduced MY pain levels. Living this new life as a Breast Cancer Survivor opened ME up to receiving and expressing Gratitude everyday for the Gift of Life.)

Second Incident – Chemotherapy

Following a lumpectomy, I was scheduled to have 12 weeks of chemotherapy. After eight treatments, I noticed “tingling and burning in both feet.” I brought this to the attention of MY oncologist.

He diagnosed the condition as peripheral neuropathy due to a side effect of chemotherapy and immediately discontinued the treatments. Peripheral neuropathy is a chronic condition that will be a part of MY life for the rest of MY life.

(I move a little slower on feet that are continuously burning, stabbing, or freezing. But, I am so appreciative for I am still able to walk. Grateful.)

Third Incident – Orencia

For two years, after the Humira was discontinued, I relied on prednisone, plaquenil and weekly injections of methroxate to treat MY rheumatoid arthritis. MY rheumatologist and oncologist researched different medications looking for one to adequately treat MY RA condition without putting ME at “risk” for a cancer recurrence. They both felt Orencia was the answer.

In late January 2010, I had the first infusion of Orencia at MY rheumatologist’s office. The second one never happened. One week later, I was hospitalized with a life-threatening case of epiglottitis. The pulmonologist who treated ME at the hospital and MY rheumatologist agreed this newly diagnosed condition was due to a side effect of Orencia.

I left the hospital with a multitude of new diagnoses: asthma, bronchitis, chronic obstructive pulmonary disease (COPD), sleep apnea, hypersensitive airways, swallowing difficulties, vocal problems, and allergies. All of these conditions are chronic and will remain with ME for the rest of MY life.

(Following such a serious and life-threatening illness, I still breathe. Thankful for God’s Grace and Mercy.)

Fourth Incident – Methotrexate

Since the Orencia was no longer an option, the prescribed medications to treat MY rheumatoid arthritis are plaquenil, prednisone, and methotrexate.

I spent seven days in the hospital in late November, including Thanksgiving Day. I was being treated for bronchitis. Because bronchitis and other upper respiratory problems had been a recurring problem since 2010, the pulmonologist performed a bronchosphy. The results showed scarring on the lungs. This newly diagnosed condition was related to a “side effect” of methotrexate. The medication was discontinued.

(Grateful for the many years, I was able to use methotrexate to reduce further joint degeneration associated with MY rheumatoid arthritis.)

Closing

With each “new side effect”, I faced a “new challenge.” And, I am grateful for each of those new challenges for I was re-directed down a new path, which re-created a better ME.

So inspired to live life to its fullest, I gladly embrace MY latest “side effect”, the “Side Effects of Kindness”. It’s AWESOME.

Pain, Pain Go Away – Come Again Another Day

Introduction

For more than fourteen years, I believed MY Pain had “Gone Away”. But, in December 2013, the Pain decided to “Come Again Another Day”. And, I started to experience both intermittent and continuous pain daily and nightly. The levels ranged from “five” to “ten” on the “standardized pain management scale.”

Why the Pain Came Back

This “pain flare-up” occurred when I quit taking the injectable drug, Methotrexate, to treat MY Rheumatoid Arthritis. I injected the first dose in 1997 and once a week thereafter until it was discontinued in December 2013.

Toward the end of November 2013, I was hospitalized for treatment of bronchitis. The pulmonologist performed a bronchoscopy procedure while I was in the hospital. Several weeks after being released from the hospital, I followed up with the pulmonologist; and, he shared the results of the bronchoscopy procedure. It showed scarring on MY lungs. Prior to MY follow-up visit, the pulmonologist spoke with MY rheumatologist . Both agreed, this newly diagnosed lung condition was due to the side effects of Methotrexate I was told to immediately discontinue the medication. They offered no options for alternative treatments.

When the Pain Came Back

Shortly after discontinuing the medication, the years of living virtually pain-free ended. I was in pain. I mean really, really severe pain. I first went to see MY rheumatologist and followed up with a visit to MY primary care physician.

The rheumatologist increased my prednisone prescription from 5 to 7-½mg. Several weeks passed with no pain relief; so, he increased the prednisone from 7-½ to10 mg. Still there was no pain relief. Finally, the rheumatologist prescribed Leflunomide, 20mg. But, he cautioned it could take at least four weeks before I saw any improvements. Could I live with this unbearable pain for four weeks? No!!!! I had to look elsewhere.

So, I went to see MY primary care physician for advice and to, specifically ask, if it was okay to take Vicodan. I had eleven pills left from the thirty prescribed in February 2010; when I was discharged from the hospital after an extended stay for the treatment of epiglottitis. He responded in a very patronizing voice, “stay away from pain medications they are not good for you.”

I couldn’t believe he said that!!! Had he bothered to look at MY past medical records? If he had taken the time, he would have noted that during MY more than 20 years as a chronic pain patient (other than the 2010 hospitalization); I never received a prescription for an opioid/narcotic medication When he offered no alternatives for dealing with the pain, I knew it was time to step outside the box.

The Pain Goes Away

I reached out to MY pain management doctor in Wisconsin. She is fellowship-trained in pain management as well as board certified in both anesthesia and pain management. I have been under her care for more than seventeen years. I schedule follow-up visits at least 2-3 times a year when I return to Wisconsin. Under her care, I had managed MY chronic pain without opioid medication and invasive procedures for more than seventeen years. Through a multidisciplinary approach, working together, we developed a comprehensive, individualized treatment plan focusing on: medication management, physical therapy, nutrition/diet, psychological counseling, and a variety of self management tools (exercise, mindfulness, diet/nutrition, sleeping habits, music, relaxation, distractions, etc).

On Tuesday, I telephoned her. She listened to ME. She empathized with ME. She responded to MY needs. She prescribed a non-narcotic pain medication to help ME.

I started taking it on Wednesday. Today, Sunday, as I write this post; I am virtually pain-free. I am able to:

prepare meals,
perform housekeeping chores,
exercise at the YMCA
shop for groceries and flowers to plant, and
water and tidy up around our container flower garden.

Come Again Another Day

Since there is no known cure for chronic pain, I am certain it will return. In the meantime, I will search for two new doctors in Florida. Doctors who, I believe, have the capacity to understand and respond to the unique needs of a chronic pain patient.

“Few things a doctor does are more important than relieving pain… pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained.” (Marcia Angell)

Who Am I?

My response to Who Am I before embarking on a new journey to find ME would have been I AM a:

Wife

Mother

Grandmother

Friend to…

Relative of …

In this Season of Life, I made the choice to look beyond attachment to anyone other than ME to define ME.

On my new journey, I want to discover how to love and embrace ME.

With each step along the way, I will read, learn and try new and different things in search of ME.

Shortly after beginning MY journey, I discovered the stillness of meditation, I Am Grateful for this Gift that allows ME to

live in the present moment;
let go of the past; and
trust in God’s plan for the future.

By living, letting go, and trusting, I Am Empowered to search for the Authentic ME.

Now, if asked Who Am I, the answer is “I Am My Deepest Desire and the Possibilities are Unlimited.”

Today: Pain and Happiness

I woke up this morning in pain. It’s been a long-time since I experienced the long lasting, penetrating, stabbing and burning pain of Rheumatoid Arthritis. But, I was determined to stick with my “routine” – 5:00 a.m. morning meditation, inspirational/spiritual reading, and quiet time. While this was spiritually and inspirationally uplifting, the pain remained.

So, I returned to the bedroom, looked at the unmade bed, and crawled under the covers. This lasted for no more than five minutes; I hopped out, made the bed, and said “not going to let this happen.” I began thinking back to those days when I allowed pain to control my life. The many days of lying in bed, the darkened room, the heating pads/ice packs and receiving no relief from the prescribed medications. These memories were enough to get ME up and moving for breakfast. Even though the pain was more severe with walking, arm movements, sitting down, and getting up, I joined Hubby at the table.

After breakfast, Hubby encouraged me to at least lie back on the recliner chair in our bedroom. Within five minutes, I was asleep. One hour later, I woke up. The pain was still there, but bearable. Bearable pain, for me, is doable pain. I can function.

Dressed in outdoor work clothes, I began the long-delayed job of cleaning out our container flower garden area around the pool. The pruning, cutting, and bending, though far from pain-free, distracted ME from focusing on the pain. When finished, I immediately cleaned up the area, stood back and admired MY work.

Following lunch, I was geared up to complete the remainder of the job; but Hubby said, “let it wait until tomorrow.” I took his advice.

I am thankful for a Hubby who reminds ME to stop, rest, and pace as I carry out these many different projects that I proclaim will make ME happy.

I learned today it is not necessary to “finish” a “happiness” project. There are times when happiness will come from just “doing” the project.

The movement today as I gardened brought pain relief. The distraction of gardening brought ME pain relief. Just the “doing” of gardening brought ME happiness.

Fibro Treatment: Pending

Last Monday, a visit to MY Primary Care Physician left ME feeling frustrated and concerned. Why? When I requested a new Rheumatology referral, he responded,

“If You Find A New Rheumatologist, Do Not Mention You Have Fibromyalgia.”

I was Silenced. What’s a polite way to say, “Doctor, I need a Rheumatologist who wants to treat Fibromyalgia”?

Satisfied with the current Rheumatologist’s treatment for MY Rheumatoid Arthritis; but, I was disappointed with his failure to address MY Fibromyalgia. Even though, I mentioned this on more than one occasion.

I left the Primary Care Physician’s office, without a new referral, unsure of what to do next.

Diagnosed with Fibromyalgia more than sixteen years ago, I was able to get access to quality health care when I lived in Wisconsin. I was blessed with empathetic, compassionate and highly trained health care providers — PCP, Pain Specialist, Rheumatologist, Psychologist, and Physical Therapists. They respected, validated and treated Fibromyalgia. Though I continued to rely on these health providers for more than three years after retiring in Florida, this is no longer practical.

When I reached out for treatment in Florida; two of physicians sent different messages: (1) Ignore the Condition and (2) Hide the Condition.

Are there health care providers who think Fibromyalgia is a “wastebasket syndrome?” Is it possible that they still Believe the Myths and Disregard the Facts as reported on:

www.fibrocenter.co

Myth: Fibromyalgia is rare.

Fact: Fibromyalgia is one of the most common types of chronic pain disorders. More than 5 million people in the United States have fibromyalgia.

Myth: Doctors diagnose fibromyalgia when they can’t find a “real” diagnosis.

Fact: Fibromyalgia is very much a real condition. In 1990, the American College of Rheumatology developed guidelines for diagnosing fibromyalgia. Today, these guidelines are widely applied. Today there are more than 4,000 published fibromyalgia studies.

Myth: Fibromyalgia is a “woman’s disease.”

Fact: The majority of people with fibromyalgia are women (about 80%). But, remember that fibromyalgia is a common condition. That means many men are diagnosed as well.

Myth: The pain of fibromyalgia is mild.

Fact: Some people only experience mild symptoms, especially when they are being properly treated. For others, the pain can be severe. It can have a significant impact on quality of life.

www.sharecare.com

MYTH: Your Fibro Symptoms Are All in Your Head 

FACT: Fibromyalgia is a real medical condition, which includes specific medical criteria for diagnosis.

MYTH: Only Lazy, Inactive People Get Fibromyalgia 

Fact: Researchers actually suspect that many people who develop fibromyalgia are driven people, and that the stress of that drive may play a role in wearing away a person’s defenses against fibro symptoms.

MYTH: There Are No Effective Fibro Treatments 

Fact: Here’s the good news. As more and more research is being done on fibromyalgia, we’re learning more about it. And that’s helping doctors pinpoint better, more effective fibro treatments. The catch is that what works for one person may not work for another, so you need to work closely with a doctor to refine and modify your fibromyalgia treatment.

The denial of health care for Fibromyalgia is probably not covered under existing anti-discrimination laws. Yet, I felt discriminated against. The same feelings of “unworthiness”, “loss of self esteem”, “powerlessness” and “helplessness”, that I experienced when faced with discriminatory practices in the past because of MY race, age, sex, and/or disability.

Yes, I definitely need health care for both Rheumatoid Arthritis and Fibromyalgia. Over MY 70+ years, I have learned to pick my battles. Therefore, I decided to focus on the RA treatment. Exacerbated pain levels and joint degeneration leaves ME little choice. For now, I will not “burn bridges” and/or “voice opposition” because of inaccessible health care for Fibro. But, I will re-visit this issue at a later date. Not sure how, but MY voice shall be heard.