Alethea Fye's Story

What were the steps leading up to your diagnosis?

I suffered from heel spurs and gout, as well as degenerative disk disease for 20 years before I was officially diagnosed with RA. The degenerative disk disease would cause serious pain and the spine doctors suggested surgery.

I just kept pressing on, working, taking painkillers to mask the pain. I didn't know at the time, but I was hiding more than a bad back. I would visit my family physician with swollen hands and she would tell me I was in a flare. I had no idea what she was talking about, unfortunately now I do.

My doctor referred me to a Rheumatologist and I waited three months for the appointment. I was working and took off to go to this appointment which never happened. I sat in the waiting room for two hours until finally I just walked out and went back to work. Yes, I'm a little stubborn and valued my job. My job was my life.

My symptoms continued to get worse, and about a year later, I revisited the Rheumatologist office. I actually stayed this time and met a great lady doctor whom in the last several years has worked closely with me to try to find the best medicines for me. She ordered a multitude of test. I had blood test after blood test. The blood test came back with seropositive RA. Unfortunately, I am now on disability and no longer have to struggle through the job I loved so much.

Who has been there for you? How?

Sometimes, I feel I'm not even here for myself. My husband, who is mostly all I have anymore, tries to be supportive. He has put up rails for me. He does the laundry, washes the dishes, and keeps the house somewhat clean, not really but I've learned to accept the clutter, and I currently share my home with I'm sure, many spiders. I don't see the spiders, but I see their homes within mine.

I have a couple of friends whom also have this disease and have given me emotional support. I continue to share articles about RD, in hopes that others will what the disease is all about.

I have found great support in online RA groups. These individuals understand and are there when one needs someone to talk to. I also have learned many things they do to help in everyday activities.

What lifestyle changes have you needed to make?

My life has changed drastically. The most drastic part was giving up my job and now being on disability. Many things led up to my decision to try to get approved.

When newly diagnosed, many doctor visits were made to the Rheumatologist, the lung doctor, and the heart doctor. I was never a person to run to the doctor for every little illness. Going to the doctor three times a week was a big change for me.

I saw my social life dwindle away, not being able to go out with friends due to extreme fatigue. I was no longer able to wash and dry my own clothes. I could not open jars or pick up a gallon of milk. A half a gallon of milk is not very cost effective, but my husband would buy it because he didn't like to see me struggle. I also had to try to find clothes with no buttons or zippers – I currently stay at home as much as possible and wear a gown or wrap up in a blanket.

Before having RA, I was very particular about my clothes, hair, nails, and shoes. I now have to be very careful about infections. I wear a mask when going into crowded places, often wearing no makeup and wearing what is comfortable and not what looks good.

What accomplishment are you proud of?

Wow, now that is a difficult question. I get to spend more time with my husband, which could be seen as a consequence instead of an accomplishment, but I'll take it.

I am still able to drive although a recent hospitalization and an emergency surgery for a staph infection which kept me off my biologics for several months almost took that away from me.

I've only been on disability for four months but being able to receive it on the first try was an accomplishment.

What's your advice to someone else living with Rheumatoid Arthritis?

Do the research. Find out exactly what this disease is. Join a group with others just like you, even if it is an online group. Listen to your doctors and take the medicines they prescribe for you. Don't give up.

I find I am often depressed and search for things I can do to keep me busy as each individual should do. Take each day as it comes and realizes that they will not all be the same. Do what you feel like doing and leave the rest.

Push yourself but be reasonable. You may not be able to do your gardening or keep your house spotless. Learn to live with what you can do and be happy about it.