The Unbreakable Sheila Aymes
Sheila Aymes is a 59-year-old upper extremity amputee. She lost her right arm below the elbow due to complications related to lupus. Lupus is an autoimmune disease in which her body’s immune system attacks her own tissues and organs. It can be difficult to diagnose because its symptoms can be similar to other ailments. There is currently no cure for lupus, but treatments can help control the symptoms.*
SAAF: Please tell me about how you lost your arm.
Sheila: I had been working out; I was very active. May 23rd, I woke up with a spot on my hand. Gary [my husband] asked if I had been bitten by a spider. I didn’t think so. My hand was swollen and red. As the day went on, the swelling moved up my arm. By that night, my shoulder was swollen.
Sheila tried to see her rheumatologist the next day, but there weren’t any openings for a week. So instead, she went to see her primary care doctor. They thought she had a blood clot, but tests suggested that it was lupus vasculitis (an inflammation of the arteries and blood vessels where tissue is damaged by blood cells entering the tissues).
Sheila: By the next morning, my hand started to turn black. My pinkie was the worst. Then I went into heart failure. It went straight up my arm and to my heart attacking everything.
My doctor is amazing. He fought hard to save my hand. When I left the hospital, my pinky was amputated. Then every three weeks, I was having surgery again doing different things trying to save [my hand]. They took the top part of my hand off because it was had turned black; it was dying. They put a clear film INTEGRA over the top of it trying to save the tendons. You could look inside the hand and see it, but in three weeks, the tendons died and that’s when they amputated my ring finger and did a skin graft over the top of my hand. They’d never seen anything like this before.
While in the hospital, they started Sheila on large doses of chemotherapy which can help calm down bad cases of lupus flare ups. It’s not just a treatment for cancer. She had gone through chemo in her 30s when she had hip and knee issues. This was her second time to go through chemotherapy. Two weeks after leaving the hospital, she developed drop foot (difficulty in lifting the front part of the foot while walking). Three other people in the San Antonio Amputee Upper Extremity Support Group have experienced drop foot as well.
Sheila: Doctors put me in a leg brace and my neurologist suggested IVIG [intravenous immunoglobulin] infusions. They are donated immunoglobulin cells that enter the body; good cells try to cling to the bad cells and kick them out. After three months, I could lift my toes forward. The drop foot went away fast. I still do IVIG every 8 weeks for 4 days in a row to keep the lupus under control.
In November of 2018, I started developing an infection in my hand. That’s when my doctor said I might need to make the decision to amputate my hand, and then he told me about Mona Patel and suggested I go to the support group and just listen.
SAAF: So, you had gone to our amputee support group meeting before your amputation?
Sheila: Yes. We met Mona and sat in. The infection was getting worse. I was ready to have it amputated because it was so painful, and I have a high tolerance for pain. This was pain like I’ve never felt before. I was so done with it.
SAAF: Tell me about Gary.
Sheila: Gary and my son were having a hard time with the idea of amputation. Gary kept thinking, “You’re not going to be able to feel anymore. You’re not going to be able to touch.” He wanted me to keep trying [to save my hand]. April 5th, we will have been married for 40 years. When I went to a lupus support group, I would see caregiver spouses who left the marriage because they couldn’t deal with their sick spouse. I was the rarity that my husband was sticking by my side. Gary was born and raised in Galveston. Our son Paul was sick when he was born, so we moved to Midland so Gary could find a different job to pay for Paul’s medical bills. We had no family there, so we learned to count on each other.
SAAF: So, you and Gary had to make a decision to amputate?
Sheila: Fortunately, I didn’t have to make the decision. [The sepsis made the decision for me.] Dec. 1st, the doctor cleaned my hand out. I thought he was going to amputate that day, but he said the infection was too bad. He did surgery again on Dec. 3rd, then when I came out of it, I still had my hand, and I just cried. I wanted it gone. I can’t do this anymore. On Dec. 5th, he went back in and amputated.
SAAF: How did Gary handle it?
Sheila: It was difficult. He was off work for two weeks while I was in the hospital, and he took off more time when I got out. He finally took a family leave to take care of me because I was so sick; I couldn’t do anything for myself. It was very stressful for him.
When I first met Gary, he wouldn’t watch any medical shows. He was really squeamish. When I was sick in my 30s, he did really well taking care of me, but it wasn’t like taking care of my hand doing wound dressing twice a day. He would do that. They taught him what to do, and he was just amazing. He went above and beyond what a husband should have to do. [He overcame his squeamishness.] He and my doctor became buddies, and he would take pictures of my hand to send to the doctor every day. He was so strong, supportive and loving. Through this experience, we fell deeper in love with each other than we were before. This was another blessing.
What really helped us is two hours before my [amputation] surgery, Mona showed up at our hospital room, and I’ll never forget it. She spoke to Gary, my son, daughter and my aunt, and she gave us such peace that life was going to move on, and we could deal with it and get through it. She was blessing in disguise. I’ve told her we would be forever grateful to her.
SAAF: Some amputees lose their limbs through trauma. But others of us have chosen to amputate. How did you feel during the time you had to think about and decide on amputation?
Sheila: I told Gary that we were really blessed because having all that time gave me time to start using my left hand [I was right-handed], learning to put clothes on and learning to write with my left hand. I feel very blessed that I did have that time. In my heart, I knew it would happen eventually.
SAAF: What initially caused the issue with your hand?
Sheila: They said the cause was the lupus and vasculitis. That’s where it attacked. It just started in my hand. I was diagnosed with systemic lupus when I was 32. I was sick with it since I was 14, but had not been diagnosed with it. I had symptoms off and on all the time.
I had to quit working when I got really sick. I stayed home and took 7 years to get well. I finally went to the Mayo Clinic where they diagnosed other issues that they could then treat and get me on the right medications. The lupus led to the amputation.
SAAF: You mentioned that your son was sick when he was born?
Sheila: My son, Paul, was born with congenital heart block from my lupus, but we didn’t know that at the time. The doctor said normally children born with this condition have a mother with lupus. I had never even heard of it. I had been sick, but they told me it was from migraine headaches. He had surgery at 24 hours old and had a pacemaker put in. He has been sick off and on his whole life. We nearly lost him in 2000. He had a bad infection around the pacemaker site. In 2015, he was diagnosed with cardio myopathy and was in heart failure. Just when I got out of the hospital, Paul went into the hospital. He’s fought major infections since 2015. He finally got a pacemaker that works, and he’s been doing really well. He is going to be 39. He was born with some learning differences that we believe were due to lack of oxygen to the brain. We were told he would never read or write, but of course, they were talking to the wrong parents! Today, he works as an assistant coach with Northside School District.
SAAF: Were you working prior to your amputation?
Sheila: Yes, I had been teaching pre-school children, 4-year-olds, at my church and I loved it. But I retired when I got sick.
SAAF: Would you return to teaching?
Sheila: At times, I thought maybe so. Gary was thinking when this happened that he would retire. But I’m younger than he is, and I need health insurance. At the time, he got me approved for medical disability, but you have to wait two years after you get disability to get Medicare. So, he’s still working for the health insurance. But Gary is going to retire hopefully this time next year, and we just want to spend time together, traveling and doing things we want to go see and do -- enjoying our grandsons and enjoying our time. What I prefer to do instead of working is volunteer at my church. I just want to do more of that.
[Right after my amputation], I told Gary, I don’t know what I’m going to do. I thought I knew where my life is going. I thought I knew where I was. I taught these little 4-year olds and loved it. I watched my grandsons every day. And then this happened and everything changed. And when Mona came to visit me in the hospital, she said, “One day I’m going to call you, and I’m going to need you to go to the hospital, and I’m going to need you to talk to somebody.” And right then before my surgery, Gary said, “I think I know your purpose.” And I said, “I think I know my purpose, too. I’m going to be able to support someone else as Mona supported me.” And life goes on, and I can live a joyful, productive life.
SAAF: How are you doing with your new prosthesis?
Sheila: When I first got my prosthetic, I really got depressed for about a month. I laid it on the counter and told Gary, I couldn’t believe this was my life. In my wildest dreams I didn’t think I’d be dealing with this. I loved being in the kitchen and loved cooking. I hadn’t been doing much of anything.
When we went to the [Amputee Coalition] conference, I told Gary I would bring my prosthetic. When we got there, it was the first time I went bare-armed without one of my sleeves, and it was so freeing. When I left the conference, I started wearing my prosthetic, and now I wear it everywhere. It’s starting to help me with the Occupational Therapy I started 6 weeks ago. I’m in the kitchen holding a knife with my prosthetic cutting vegetables while I hold them with my left hand. I held a peeler with my prosthetic and peeled a carrot; I was so excited. When I first started wearing it, I just couldn’t figure out how it was going to help me. But I used it to unzip one of my cosmetic bags and thought, this is cool! It is definitely helping me, so that’s very exciting.
SAAF: Some people choose not to wear a prosthesis.
Sheila: Folding clothes is easier without my prosthetic. I can use my arm and fold sheets better.
SAAF: I had seen you wearing beautiful fabric sleeves on your residual limb. Can you tell me about those?
Sheila: I had to come up with something; I had so many skin tears; my arm is not a pretty arm after all I’d been through. I went to a lady at an alterations place and asked if she would [sew a fabric sleeve for me]. She said she’d never done anything like it before but she would love to try. She was very sweet.
SAAF: Your prosthetic arm is very cool. How do you feel about it being “uncovered.”
Sheila: Gary told me I don’t have to wear it if I don’t want to. But now that I’m learning to use it, it’s exciting. So, I’m wearing it proudly. I finally wore it to church last weekend. My grandsons like me to wear my “robot arm.” I told Gary that I would also like a cosmetic arm. We met a lady at the conference who had one. It doesn’t do anything but it looks like a normal arm and hand. She could wear a ring and bracelet and have her fingernails painted. From a distance, it looks normal.
SAAF: I think being an amputee helped the children in my family be more understanding about people with disabilities. What do you think?
Sheila: We were out to lunch with the grandchildren, and our grandchildren said “Gramzey, there’s a man, he doesn’t have a hand either. And it was Scott [Wilson, one of our other SAAF family members who is missing his arm]! Scott got up and came over; it was the day after he had run the marathon, and the kids were really excited to see him and talk to him. I believe it’s going to help them in the future to be more compassionate and understanding about disabilities.
SAAF: How are you adjusting overall?
Sheila: I have days when I look at my arm and miss my hand. Earlier in the week, I had one of those moments. But thought “Okay, Sheila, snap out of this. Find your joy.” When my kids were growing up, I always told them, “Choose joy today” when they would leave for school. I told them that all these years, so I have to live that, too. Those are the tough times—every day, the reality that it’s gone. There’s not a day that goes by that you don’t know it’s missing. I think that’s the hardest thing.
But the good is the whole new world that has opened up to us, meeting [everyone at the Foundation]. Like I told Gary, there are blessings out of all of this, and the Foundation is a big blessing. I see myself growing with the Foundation with new beginnings all the time.
I was very active. We’d gone to Alaska and went zip lining. I think I could figure that out again.
I’m still Sheila.
My spirit is unbreakable because of my faith and support by Gary, our son Paul, daughter Kelly, son-in-law Ashley, grandsons, Aunt Claudia, family, our church family, friends and amazing medical staff.