Patti’s Story

July 22, 2018 in Interviews, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visitour story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

In my 58 years, life started in Asheville, NC with two simple mountain-raised parents with 4 children and no real clue what to do with them, other than to love them. The move to Houston, Texas, in first grade, was my first experience with culture shock. Freshman in high school was the parent-chosen time for the next big move, providing better experiences and exposure to a different way of life, with the family move (minus father) to San Diego, CA. For the next 27 years, I lived a happy, independent life after divorcing when my boys were 4 and 8. I didn't have time to deal the fibromyalgia and chronic fatigue at that point. I chose at age 44 to sell my business and home since my boys had grown up and moved out. The whole family, one at a time moved to the quiet, pristine town of of Bend, Oregon. Ahh, no traffic (2004) more affordable, no sales tax, conscientious people. I tackled the large home and decided the downstairs quarters, with its own entrance, would make a perfect two bedroom rental with mini-kitchen. I like decorating. With a friend's help, we got the five bedroom, three bath home beautifully put-together and furnished in a week! Complete overload for my fragile system! Then I "crashed" and had to return to San Diego to live with my sister for 2 months...I have not been able to physically work since about 2004. My interest are mostly reading and taking in the sights, spending long lunches or dinners with groups of friends, where I currently live.

When were you diagnosed with RA/Rheumatoid Disease?

Although I was not officially diagnosed with RA until 2006, the beginning of it was the stress of 'the big move' mentioned above. It was a combination of fibromyalgia, which was diagnosed in the late 90's, and RA. Somehow, I got it under control and got off Enbrel by the following year. Not much advice was offered at the doctor's office I had to drive for two and a half hours to get to. "Take your injections...here is a pamphlet." STRESS in 2010 brought about a new body part being affected the RD...I call it Rheumatoid Disease. I woke up, put my feet on the soft floor and it felt like I had hiked through lava rock all night barefoot. It took 2 frustrating years and several doctors to even get the diagnosis correct. Being hyper-sensitive, I had to take brand name medication. Methotrextrate did not work for me. Through another doctor, I was put on Plaquenil, which seemed to help. It was not until years later, that two doctors told me I needed to take Plaquenil in conjunction with another medication. Steroids seem to be the main suggestion, which I try to avoid.

What was your first symptom?

in 2006 and 2012, my hand would curl up in a hook-like position. I would physically manipulate it until the muscles released. 2010 was when the first system presented in feet. Hard knots on my palms and larger thumb joint were some initial indicators in 2006. 2010...the pain in feet. Swollen knees, arthritis in neck. Pain and swelling jumps from one body part to another.

What is the biggest way rheumatoid disease has affected your life?

The fact that I can only commit to plans on the day of. If I didn't eat a perfect diet the day before and eliminated every single stressor from my life, "ability to do and go" are unpredictable. People's attitude in regards to invisible pain is not empathetic, unless they have a family member or friend that has explained what the new life version will and will not allow. No longer able, most times, to do a lot of stairs. No way, a long plane flight can be tolerated. Chronic pain leads to depression, of course, you have lost your previous life!

What has been your experience with treatments for rheumatoid disease?

My treatments in the U.S. have been a terrible experience. One that many will discover on their own. Doctors say "we'll try this" and prescribe a strong medication in the eight minutes of time allowed to discuss a serious situation. Too many times, when bed-ridden, I have resorted to steroidal cortisone, orally and injections. The oral method makes me feel ampy, like I drank five pots of coffee. Steroidal options only bring the symptoms back ten-fold at a later date and it has caused my skin to thin. Seeing one doctor in the states, leads to a referral to another doctor, usually a specialist, which takes months to get referral approved, then months to wait for for an appointment. The U.S. medical system is severely broken. I have tried chiropractors, alphabiotic neck to spine adjustments, acupuncture, accupressure, x-rays, ultrasounds, MRI, kenalog injections in knees every four months, reflexology, ozone therapy, Bowen sessions, diet change, apple cider vinegar, turmeric, and more. Yoga helped, but I am not physically able to do it currently. MY BEST CHOICE WAS MOVING TO MEXICO! That was almost 2 years ago. Processed food is not really an option here. Slower pace of life...more relaxed attitude has helped greatly. Medical system in Mexico offers a more relaxed, holistic approach. Doctors never rush you out of the office. Affordable too...it costs the equivalent of $30 USD to see any specialist you would like to spend an hour or more with. The doctors here in Mexico diagnosed liver inflammation from medical toxicity, from Amytriptyline (the anti-depressant that I was given in the U.S. as an alternative to the paxil disaster). I discontinued it February 2018 and had trouble getting off it, too. Two eight hour hospital stays requiring nausea, migraine and de-hydaration IVs. It was NOT the Plaquenil causing the toxicty, which was originally suspected. I was told how to properly titrate down from paxil in 2016, so I slowly weaned off, twice as much as directed. Still lead to withdrawal systems for months, migraines, fever, could not tolerate sound, light or food smells. Doctors continued to disbelieve this was all the cause of symptoms for months! The last one finally agreed that I was hyper-sensitive. What they don't say is that if you choose to take it, you are on it for life! I stopped taking it, but, oh, the repercussions. I suggest everyone read the complaint blogs, 1000s of them. A current medication that contains Naproxen and a light muscle relaxer is my main medication. RA leads to many other issues, as I am sure people are becoming more aware of. I take ativan as my second Rx, which ensures a good nights sleep, which is crucial for people with the combination of Fibromyalgia and RA.

What do you want the public to know about rheumatoid disease?

You have no choice but to learn to eliminate stressors from your life. You do have a choice what to take and what not to take. Do not blindly accept what doctors tell you to do. Do your homework, figure it out on your own.

How have you worked to overcome challenges presented by rheumatoid disease?

Determination and the attitude that I will persevere. I avoid situations that involve drama and simply remove myself. I choose to spend a great portion of time alone reading, watering plants and watching the hummingbirds.

What have you learned through living with rheumatoid disease?

I have learned how nasty and disabling it can be. I have learned how many people have it. I have learned there are a million different opinions on it and the treatment. Old patterns have to be discarded. Change is forced upon you, whether you choose to accept and adapt is strictly up to the individual.

What encouragement or advice would you give to someone who is newly diagnosed?

Read, research, listen to your own intuition. Do not blindly do what a friend, relative or doctor suggests. Listen to your body. Avoid stressful situations. Hope for better treatment/cure in our lifetime. I am leaning toward TNF injections, which are considered very expensive here in Mexico.
Consider your options and alternative treatments.

What else would you like to share?

All the writing writing took all the energy I have until I re-charge. Take it slow, you type As, especially.