Editor’s Note: This is the very personal, inspiring life story of Peggy Abner, who I met on Twitter just about a week ago. Some things Peggy mentions and some pictures may not be appropriate for younger readers. Parental and reader discretion is advised. The pictures of the rashes on the chest, arms and legs, and also the picture of the uterus are NOT Peggy. I got them off Google to show what could happen if someone has lupus.
I became ill at the age of 26. I had a four-year-old and a two-year-old at the time. I was misdiagnosed with multiple sclerosis in the beginning. When my left leg swelled up twice its size, they realized they were treating me for the wrong thing. It was lupus. That first year I was hospitalized twice, five days each time. I couldn’t walk, and had extreme muscle weakness, memory loss and fatigue. I didn’t have organ involvement at the time. Mainly joint and muscle involvement. I spent almost a year in every kind of therapy imaginable. Occupational therapy, physical therapy, massage therapy, water therapy, three days a week for months. I learned how to walk again, got my strength built back up in my muscles and fought my way back, literally. I had two small children who depended on me. I had no choice. After almost three years we had the disease in remission. At that point I took a remission drug and went back to work. I worked in a hospital laboratory as a phlebotomist/lab assistant. My disease stayed in remission for four years.
In January of 2007, it came back with a vengeance. My luekocyte, lymphocyte, and monocyte counts were all elevated, and my red cell count was too low. I had kidney and intestinal involvement and lung, heart, and liver involvement soon followed. My blood inflammation levels were through the roof. To keep my levels as close to normal as possible, I was started on two chemo shots a week, along with plaquenil (an anti-malaria drug) and a slew of others. I was back to using forearm crutches and a cane. I could hardly get out of bed. Despite how sick I was, I still made sure I cooked supper for my family every night. I swelled up from the shots and all the inflammation. I didn’t recognize the person in the mirror. I started planning my own funeral, convinced I would not survive. There were days my children were afraid to go to school and leave me alone. They feared I would need help and no one would be there, and some days they feared I would die. Water therapy is primarily the only kind of therapy that is productive for me now.
I started rhemicaid, a super anti-inflammatory, two years ago. It helped reduce the inflammation the lupus was causing and in doing so decreased the amount of activity and damage it was doing. Once I had been on it a year, I was doing better, feeling better, but my insurance refused to pay for it any longer. So, I had to start taking Enbrel shots, which do not work near as well as the Rhemicaid IV. About the time I was switched from Rhemicaid to Enbrel, I decided to start trying to make a go of my photography career. It has been slow going, and I don’t stay very busy, but it has given me something else to focus on, something to look forward to. Right now, I just try to maintain, get through each day, keep my pain level down and squeeze as much out of each day that I can. I never plan ahead, and I try not to promise anyone anything because I never know what day is going to be a bad one until I get out of bed that day. And sometimes, days that start out great end really badly. I have learned how much I can push my body and what signs to look for. I also know what those signs mean.
Lupus is a chronic inflammatory disease (also autoimmune) that can damage any part of the body……joints, skin, organs. In Lupus, something goes wrong with the part of your body that usually attacks germs and viruses (immune system). It starts attacking your body. You are born with the predisposition to develop Lupus. Most people who develop Lupus have other problems first. I had endometriosis. It is also an autoimmune inflammatory disease. I had seven surgeries on my female organs between the ages of 18 and 25. The seventh surgery was a complete hysterectomy. My body was used to attacking my uterus and ovaries and when they were removed it chose another form of attack. And to answer your question, I DO feel like less of a woman. It wasn’t just the hysterectomy. It was all of it. Everything and years of sickness all wrapped up into one big ball.
I became ill within three months after the last surgery, but it took a year for them to realize just how serious it was and to start running tests. They thought at first I had cancer. Normally our immune system produces proteins called antibodies that protect the body from germs and bacteria. With an autoimmune disease your immune system cannot tell the difference between these germs and bacteria and your body’s healthy tissues and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. The inflammation causes massive damage that cannot be repaired. Lupus is a disease that has “flares” and remission similar to cancer. However, it is unlike cancer in the fact that cancer has abnormal tissue (tumors) and in Lupus healthy and normal tissue is what is attacked.
Many things trigger lupus flares including exposure to sun, certain antibiotics, pregnancy, surgery, infections, viruses, stress, to name a few. Stress on lupus is like pouring gasoline on a fire. It will cause instant flares. When a flare occurs, you break out in a rash. My rashes are usually on the face and chest, but they can also be on the torso and limbs. However, some of the rashes you see online are of people who have the type of lupus that only affects the skin, not systemic lupus erythematosus (SLE). Keep that in mind 🙂 They don’t tell you what type of lupus a person has in the pictures so you never know.
I get sores in my nose and mouth. Weakness, fatigue, headaches, blurred vision, dizziness and increased pain in limbs can all happen during a flare. These are signs that you are having a flare, and you need to notify your doctor. Other symptoms of lupus include hair loss; weight loss or weight gain; allergy to the sun; extreme fatigue; painful and/or swollen joints; fever; edema of hands, face, feet, or legs; butterfly rash on face; anemia; pleurisy (my first round was three years ago); tendency to get pneumonia; Raynaud’s; and Sjogren’s syndrome. It causes inflammation of the kidneys, liver, pancreas and intestines. It can cause inflammation around the heart (pericarditis) along with other complications of the heart. It causes problems with blood sugar (mine bottoms out). It can even cause brain inflammation. Lupus causes high blood pressure. Because of kidney trouble, you can require dialysis and even kidney transplants. Inflammation of the nervous system and brain can and does cause memory problems, confusion, headaches and strokes.
Inflammation in the brain’s blood vessels can cause high fevers, seizures, behavioral changes, hardening of the arteries (coronary artery disease), and heart attack or heart failure. There is no part of your body this disease does not or cannot affect. It can even cause eye diseases. To be clear, I have SLE, the most common form of lupus. All symptoms I have listed are symptoms involved with SLE. There is a form of lupus that affects ONLY the skin.
Pain in lupus is caused primarily from inflammation. Inflammation of the joints, bone, muscle tissue, even organs. I experience kidney pain, intestinal pain, and even tenderness and pain in the pancreas. When I have pluerisy, my lung hurts. When inflammation is decreased, pain decreases. Fighting inflammation is the most common thing treated and fought in lupus. If inflammation is under control, life for a Lupie is much better! The lupus has caused me to develop fibromyalgia and rheumatoid arthritis. These are called overlapping diseases. People with lupus are usually diagnosed with more diseases before their life is over. However, the lupus is the direct cause of these diseases. That’s why they are called overlapping diseases.
I have been hospitalized for migraines from the lupus. I have a lot of pain in my legs. That is the part of my body that hurts the most. I had cellulitis of the face a year ago that I would have never had if it had not been for the lupus. My immune system is shot and I can’t fight off anything. In part because of the lupus, and also because of the meds I take to purposely lower my immune system to try to make the lupus less active. I get pnuemonia easily, I have problems with low blood sugar daily. I have to take a heart pill twice a day to try and keep my heart in a normal rhythm. I have numbness in my limbs due to vasculitis from the lupus. The nuerontin I take really helps with this. I have dizzy spells a lot for which I take meclizine. My doctors keep me stocked in prednisone the Lupus responds well t it. I take three shots a week, two enbrel shots and one methotrexate shot. I have 13 prescriptions I get filled monthly. Muscle relaxers help with the pain, stiffness and Charlie horses in my muscle tissue.
Dr. Richard Wiethoff did my surgeries and if it wasn’t for him, I wouldn’t have the two kids I have. I lost four babies. Two died in utero, and they had to go in and take them. I wasn’t far enough along either time to have a burial. The other two I miscarried. I had two “D and C’s,” and the other surgeries were removing cysts off my ovaries and the endometriosis off of my uterus. He just kept cleaning me up to try to help me have children. A “D and C” is where they scrape the lining of the uterus. They clean out the inside of your uterus and get rid of what they call “nasty old junk.” It makes you more fertile. It makes the uterus healthier and better able to carry a child to term.
I was told after my surgery at the age of 18 if I wanted any children I had better do it soon. I had surgery once a year. When my stomach started hurting really bad I knew it was always time to go see the surgeon again. I was told right after my first surgery I would have a hysterectomy within 10 years. It was a lot to go through being a newly married person. I was in college at the time, too, which I ended up not finishing. My husband has been great through all of it. Any other man would have left long ago.
When I received the diagnosis of lupus, it devastated me. A good lifespan of a lupie is 30 years, which meant I would have been 56. I grieved for what could have been and what would be. At that time my family was no help. Even my mother fought me and the doctors. The only help we had was from friends at our church. They are the ones who took me to my therapy and doctor’s appointments when my husband couldn’t. And keep in mind I also had two toddlers in tow.
We had no idea when we did the hysterectomy when my youngest was 18 months old that my body would find another mode of attack. We thought we were solving my problems and things would be more normal. No more pain.
I had to have the hysterectomy when I did. I was losing too much blood. The endometriosis had wrapped all over my other organs. It would have turned cancerous quickly, and I would have died. It is easy to say you would change choices you made in life, but when you don’t have a choice to start with, you really can’t change it.
It wasn’t until the second round of bad health that my family started coming around more. And it wasn’t at first. It took a couple years. When they saw I wasn’t snapping out of it this time, they realized I might die. My sister and my mother started taking me to my doctor’s appointments almost two years ago. I am four years into it this round.
There is a new drug on the market now, Benlysta. It is the first drug in 50 years to be approved for lupus treatment. We are trying to get the insurance to pay for it because it is so expensive. At this point, it is my only hope of ever getting this disease in remission again.
A prime example of how my life is affected occurred the other night. I had to drive 15 miles to the next town to pick up my 16 year old. Halfway there, my sugar bottomed out on me. I didn’t think I was going to make it to my destination and then I was stuck sitting in a gas station parking lot for 10 minutes eating a candy bar and drinking a pop to try and get my sugar up. I was dizzy, couldn’t focus and probably appeared to be a drunk driver. I had no business driving back home, but my son can’t drive yet, and my husband wouldn’t answer his phone. I had no choice. But in my defense, I was fine when I left the house. It hit that fast!!! So I never know what is going to happen or when.
I am 100 percent disabled according to the federal government. It’s funny because ever since they “deemed” me disabled, I have been desperately trying NOT to be disabled. First off, I have no typical weeks. There is nothing “typical” about me. I get up and make sure the kids get ready for school and on the bus. I find a little something to eat for breakfast and take a handful of meds. If I am extremely tired I lie down and take a nap. My days start slow. I am stiff and sore. It usually takes two hours to become productive. I clean as much of the house I can while everyone is gone to school and work. How much I get done depends on how much energy I have and whether or not my sugar level crashes (thanks to the pancreas!). I study photography lessons for an hour or two, or if I have editing to do, I will do that instead. When they get home at 3:30, I start cooking supper and clean up the kitchen. If I have errands to run, I usually do it around 4:30 so I have someone with me in case I need them. Then I spend an hour or two on the couch relaxing and getting caught up on the laundry at the same time. I also have to make sure the boys’ homework is completed and showers are taken (They are boys). Then I have to make sure everything is in the backpacks, clothes are laid out for the next day and my 16 year old’s bag is packed for weight class. Then I start the nightly drama of going to bed. I have to find a snack and take another handful of pills. My legs hurt a lot, and I have to get my pain level down enough to go to sleep. What I have described is a GOOD day. If I have a bad day, I stay on the couch all day, and the only thing that gets done is supper (and the clothes laid out and backpacks packed). Nothing else gets done because the fatigue is too bad, and the pain is too high.
Hobbies, holidays and heritage
Almost three years ago I decided to start studying photography. I decided to turn a hobby into a career. I wanted something I could do for me, that would make me feel worthwhile again and something that didn’t require a lot of physical activity. Photography was something I could work around MY schedule and my body.
My interest in photography came from taking pictures of my kids ALL the time! I had a camera as a teenager and took pictures all the time. I loved taking pictures of nature’s beauty. Through the years, my mom decided I was a better photographer than she was so she started telling me to bring my camera to certain functions, and she would pay for the prints. Then I became the official photographer for the family. I would take the pictures, and they would make three or four copies of each print. About four years ago my niece got married, and my pictures were almost as good as the official photographer my sister paid to do the wedding. His poses were better. His prints better quality. So my family started urging me to “do something with it!” I didn’t figure I stood a chance, so I did nothing. My uncle got married a few months later and after looking at the pictures of my niece’s wedding that I took, his soon-to-be wife fired her photographer and asked me to do it. I mimicked the poses and such the other photographer had used, and they turned out really well! So, I started studying photography. I went to the library and checked all the books they had and studied them. I went to another library and checked out all their books! Then I started digging around for anything I could find on the Internet. I found several big sites that offered daily tips and lessons straight to your inbox and signed up. I still study photography and still have a lot to learn. I haven’t studied anything since the boys have been out of school for Christmas break, so I have 34 emails to catch up on! I am what they call a self-taught photographer because I have never stepped foot inside a classroom. Photography gave me and still does give me something to do, something to look forward to, a reason to force my body to go when it doesn’t want to go anymore.
I know I have said my kids do that, but they only do so much. They are older, require less care, and I don’t have to push my body so hard. I think photography saved my life two years ago. It gave me something that made me feel like a productive human again. I didn’t start advertising or trying to make a career out of it until about eight months ago. Until then, it was a hobby. Trial and error. Learning what worked and what didn’t. And it gave me time to find a professional print lab that turned out quality prints at an affordable price! My goal was to bring quality, professional prints to the masses that anyone could afford, and I think I did that! So now I am just hoping it takes off and I can stay in business enough to pay for a studio! I also needed something that didn’t require a lot of physical exercise that I could actually do, and photography gave me that!
The holidays are very important, but the importance is mainly on my family, in this house. I have tried to create traditions for the boys. Going to midnight mass on Christmas Eve. Putting up the tree and decorating it. We make a gingerbread house every year, Jared didn’t help me decorate it this year, just Camron. That made me sad. We usually make Christmas cookies and candy, but we didn’t do that this year. I lost all my recipes. We used to go drive around and look at lights. They are too old for that and don’t want to do that anymore. I always had their pictures taken with Santa, and we wrote him a letter, until they stopped believing in Santa. We have the traditional family Christmas at my grandma’s and then one at my mom’s. I only have two Christmases left with Jared until he graduates high school, and then everything will change. I am very aware of that, and trying to squeeze out ANYTHING and EVERYTHING I can at this point!
My grandparents died before I was born. I look just like my Indian grandma, except with strawberry blond hair and light skin, which I got from my grandpa. They say the lupus came from the Cherokee side of the family. People with American Indian heritage are more likely to develop lupus. My grandmother went to a Baptist church and was not raised on a reservation. She was born in North or South Dakota and ended up in Kentucky. My grandpa’s parents came over here from Ireland before he was born. My dad got everything from these two people, and a lot of it rubbed off on me. They were hard working, poor people, and didn’t take handouts from anyone. They instilled that in their children. My father instilled it in me. My grandmother didn’t pass down any customs from the Cherokee heritage to her children. Why, I don’t know. But they believed in the earth. As if she was a person. Respect her, and she will respect you back. They were all about farming and planting flowers and trees. That is about the extent of what I know about my great grandparents’ way of life. My mom’s side of the family is all Irish, so I am 3\4 Irish and 1\4 Cherokee.
What might have been, what will be
I think we all wish we would have told someone we loved and lost that we loved them more often. My dad died when I was 21. I was pregnant with Jared. My relationship was rocky at best. He apologized a week before he died. That’s all I ever wanted: acknowledgement of his wrong doings and an apology. He died a week later. I grieved for what could have been, what never was, and I felt robbed. All we can do is the best we can with the time we are given and always tell someone you love them every time you hang up the phone or leave their house. I should spend more time with the only grandparent I have left. But life gets in the way. I call her often, tell her why I haven’t been to see her and always tell her I love her. She also knows that I will move her in with me before I will see her go to a nursing home. Even with me being sick. I am the only one in my entire family that has promised her a place to stay if she wants it. That promise alone means the world to her. I took pictures of our family (Brian, the boys and myself) and had prints made of all of them. She has them scattered in her kitchen, dining room, family room, and living room and she knows I am only a phone call away. And she is more proud of those pictures than anything else I have ever given her.
I know that life is not guaranteed. Any day could be the last. There is no point in worrying about things we cannot change. And judge no one. You never know what is going on in someone’s life.
Helping hands, earth angels
My husband’s parents have been a huge help this time around. Without them I don’t know what we would have done. Three years ago I really started thinking I was going to die. If the disease didn’t kill me, the meds would. That same year, because of cancer I buried two people I loved dearly. It makes you face your mortality. I became sad and depressed, afraid I would be dead soon, too. I had things I wanted. Things I needed to know would be taken care of if I did die soon. My boys are still children. They still need taking care of. So I started planning and making people promise me certain things. I needed assurance that if I died within months everything would be okay. And in my defense, I am not the only one who thought I wouldn’t still be here today, we ALL thought it. We all thought I only had months left.
My children have suffered a lot, feared a lot, and I can’t ever change that, take it back, fix it. But I do try every day to make up for it in any way that I can. I think it has made them better human beings. They are more caring, kind, considerate, understanding individuals than they would have been. They have at times been my caregivers. Help me get from the couch to the bathroom. Bring me a glass of water when I am vomiting. Little things. But it’s those little things that mean a great deal. They are turning into fine young men, and I am so proud of them for that. I have started growing closer to my family just in the past year, but I am still very guarded with them, still afraid of being let down and hurt. My husband deserves a medal or something for dealing with all of this. He helps me when he can and tries to pick up the slack around the house when I physically can’t do it. He has been my angel here on earth. He is the only one who has stuck by my side through all of this no matter what.
People tell me all the time how brave and strong I am, but I don’t see it that way. I feel weak and scared most of the time. I just don’t tell anyone that. If I am brave, if I am strong, it’s because I had to be. I didn’t have a choice. My kids needed me and needed me to be strong for THEM, to protect them and make them feel safe and secure. And no matter what life has thrown at me, I have fought tooth and nail for my boys!
Four years ago, when I first became extremely ill again, when the lupus came out of remission, my best friend Michelle was there for me when my family wasn’t. She took me to doctor’s appointments. These doctors are an hour and a half away from me, so it tied up her whole day every time, and she never complained. She cooked supper for us more than once, helped clean my house, etc. Michelle has been a second mother to my children. She is another one of those angels God sent to me. The people from my church were our angels the first time around. I think God sends us angels as we need them.
My husband tells me all the time I am still beautiful to him. Even when I look like something the cat dragged in! He still loves me, wants me, needs me and makes sure I know it! Little hugs here and there, kisses on the cheeks and forehead, telling me he loves me every day. All those little things matter.
If I had it to do all over again, there are things I would have changed. But unfortunately a lot of it was out of my control. I will never regret having my children, for they are my life. My reason to live. If I would have had more money, it would have made life easier and would to this day, but we can’t change that, either. I have gone without meds and still do for lack of money. There are some meds I wouldn’t have taken, but we didn’t know the side effects or what it would do until we tried them. It’s trial and error. I don’t think the doctors could have done anything differently if they tried. I had a team of five doctors working together to try to get the best outcome possible. Those moments when I wallowed in self pity, I wish I hadn’t done that, but I am only human. Sometimes I think it was a blessing I got sick with the lupus when the kids were so small. Camron doesn’t remember the first time around at all because he was so young, and Jared remembers a little but not all of it. Yes, it made my life difficult, but it spared them long-term emotional scars. Jared remembers me not being able to walk and me being sick but nothing like it would have been had he been older.
I know for me, the pain, the constant feeling bad (like I have the flu), the constant medications, doctors, poking and probing make me want to give up. It just gets monotonous. What makes me tick? Good question. I can’t stand being lied to. I believe you should treat others the way you would have others treat you. Don’t judge a book by its cover because you never know what that person is going through. Try to be respectful of others. Screw me once, shame on you. Screw me twice, shame on me. I do tend to hold grudges longer than I should. I get that from my Cherokee Indian grandmother. I love photography! It is my joy in life. I love doing portraits of people and watching their faces light up when they see the prints. There is a satisfaction in knowing I did that like no other. I brought joy to someone else’s life in some small way. And last but definitely not least, it’s my boys. I live for them. They make me tick, drive me. To be a better mom, a better woman, a better person. I live to watch Jared play football. He is an amazing wide receiver and defensive back. I love watching him pounce like a cat on whoever has the ball in hand at the time. I love watching Camron play tennis. Although that sport bores me to tears, I couldn’t be prouder!
Peggy’s advice for others who have lupus
Just do the best that you can to get through each day. Do whatever YOU have to do to get through that day. Don’t worry about what others will think because what they think won’t change your situation or get you through it. And don’t be too hard on yourself. Learn to forgive yourself. You didn’t ask for this disease or any disease for that matter, and you can’t help it. And stop apologizing for it. (Things I have to work on daily!)
About Peggy Abner
I am a wife and a mother of two teenage boys who play tennis and football. I will be 38 years old in March. Photography is my passion. I live in Indiana, but I am originally from West Virginia. I love the mountains with every fiber of my being. I feel at home and at peace in the mountains, any mountains. I have lupus, but it is not who I am.