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Living with Lupus

If you previously followed Peggy's story, you can jump to her 2014 and 2018 updates. If not, read on!

I am a wife and a mother of two teenage boys who play tennis and football and 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.

At the age of 26 I became ill. I had a four-year-old and a two-year-old at the time and 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 as it was mainly joint and muscle involvement. I spent almost a year in every kind of therapy imaginable; occupational therapy, physical therapy, massage therapy, water therapy for three days a week that went on for months. I did learn how to walk again and got my strength built back up in my muscles and fought my way back, literally. I had two small children who depended on me so 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 and my disease stayed in remission for four years.

In the 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. It started with kidney and intestinal involvement with lung, heart, and liver involvement soon to follow. My blood inflammation levels went through the roof and 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 then back to using forearm crutches and a cane and 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 and started planning my own funeral as I was 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 then started rhemicaid, which is a super anti-inflammatory, four years ago. It helped to reduce the inflammation that the lupus was causing and thus decreased the amount of activity and damage it was doing. Once I had been on it a year, I was doing better and feeling better but my insurance refused to pay for it any longer. Due to this, I had to start taking Enbrel shots, which do not work nearly 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; sometimes, days that start out great… end really badly. I have learned how much I can push my body, what signs to look for and I know what those signs mean.

What is lupus?

Lupus is a chronic inflammatory disease (also autoimmune) that can damage any part of the body… joints, skin and organs. With lupus, something goes wrong with the part of your body that usually attacks germs and viruses (immune system) and it starts attacking your body. You are born with the predisposition to develop lupus and most people who develop lupus have other problems first. I had endometriosis which is also an autoimmune inflammatory disease. I had seven surgeries on my female organs between the ages of 18 and 25 and the seventh surgery was a complete hysterectomy. My body was used to attacking my uterus and ovaries so 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. At first they thought 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 also 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 can trigger lupus flares including: exposure to sun, certain antibiotics, pregnancy, surgery, infections, viruses, stress, to name but 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 and 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.

Peggy and Family

I also 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 and it can cause inflammation around the heart (pericarditis) along with other complications of the heart. It also causes problems with blood sugar and mine bottoms out. It can even cause brain inflammation as well as 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 too. 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 also 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 also contracted cellulitis of the face 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 pneumonia easily. I also have problems with low blood sugar on a daily basis. I have to take a heart pill twice a day to try to keep my heart in a normal rhythm. I have numbness in my limbs due to vasculitis from the lupus but 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 and the lupus responds well to 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 charley 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 and 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 for removing cysts off my ovaries and the endometriosis off of my uterus. Dr Wiethoff 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” and it makes you more fertile. It also makes the uterus healthier and better able to carry a child to term.

I was told after my surgery, at the age of 18, that if I wanted any children I had better do it soon. I had surgery once a year and 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 that I would need a hysterectomy within 10 years; it was a lot to go through being newly married. 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 first 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 as 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. Then it wasn’t at first – it took a couple of years. When they saw I wasn’t ‘snapping out of it’ this time, they realized I might die and my sister and my mother started taking me to my doctor’s appointments.

There is a new drug on the market now called 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 and, at this point, it is my only hope of ever getting this disease in remission again.

My advice for those with 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. Stop apologizing for it. (Things I have to work on daily!)

On the 13th of December 2014, I had the pleasure of Skyping with Peggy. It took a little arranging, due to the time difference, but we ended up chatting for an hour and a half! When we were saying our ‘goodbyes’, my only regret was that I hadn’t recorded our conversation as I would have loved to have shared it with you. Despite the seriousness of our discussion, it was very relaxing. Peggy not only elaborated on her original story, but also updated me on what she has been through in the last 3 years and kindly agreed to give us a brief update. We want to convey a personal thank you to Peggy, not only for the Skype call, but for making herself available to those who have made contact since her story came out; she has touched so many all around the world. - Sonya

2014 Update

Lupus is a devastating disease in more ways than one. Since my original post came out, I have had a mild heart attack that required a heart catheterization and an ultrasound of my heart. My heart meds have been increased and they have added nitroglycerin to the mix. I also now take prednisone daily on top of the methotrexate injections and humira injections to try to keep the inflammation under control. I was 37 when this occurred. I still have problems with my heart but I am supposed to take the nitro and if it fixes it, I do not have to go to the ER.

When I was 39, the lupus also started affecting my brain. I started having dyslexic symptoms, severe short term memory problems, and massive confusion with numbers and words. I can’t seem to remember where I put anything in my home and functioning on a daily basis has become difficult. I have gotten to the place where it is no longer safe for me to drive and they suspect I am having mild seizures. I was diagnosed with CNS vasculitis shortly after my 40th birthday.

I now use a bipap machine when I sleep and I am highly susceptible to infections. Life seems to be getting harder and coping more difficult. This disease seems to steal the very essence of who you are as a person every chance that it gets. I am still fighting, but I have been very discouraged lately. One thing I have learned, you can fight and persevere a lot with this disease. But when it attacks your brain, and makes things all fuzzy and chaotic inside your mind, there is not much you can do to fight that.

I wish all of you, lupies out there, good health and happiness for as long as you can possibly have it! Love, Peggy

 
 

2018 Update

Since my last update, a lot has happened. I moved twice; first to Texas, then to Kentucky. Two COMPLETELY different states.

Firstly though, a quick recap on some events! Before I left Indiana, I was diagnosed with Graves’ disease and then had a heart attack. It was a mild one and when they did a heart catheterization, they found there was no permanent damage done. I am telling ya though, I think the week leading up to the Graves’ diagnoses was worse than the heart attack. No offense to anyone who has a massive MI, but I thought I was dying. It was awful. I had no energy; I was so weak I truly thought I was dying. I thought my PCP was going to let me die until they figured out what was wrong with me. This heart attack was in January or February 2012.

Jumping to November 2015, I started going into acute renal failure and my rheumatologist said he had done everything he could for me. By December, my PCP (who I worshipped!) told me that I needed to make peace with the fact that I was going to die. At the time, one of my sons was in the army, based in Texas, and I had been told they had better doctors there. So, by March 2016, I had appointments set up and off to Texas I went!

Texas was interesting. From the lizards (the size of those iguanas!) to the centipedes (the size of snakes) I found in my pools. It truly was amazing. But the greatest the thing, "I am still alive". They put me on two different types of chemo and pulled my kidneys out of the kidney disease and back to normal. They also started me on steroids. Between the three, it worked. However, in August 2016, I started to have seizures and was in the hospital for 5 days when they diagnosed epilepsy. When my son got out of the army on December 24th, we started packing and headed towards Kentucky as that is where my husband wanted to move.

Little did I know that when we arrived in Kentucky, the doctors would take me off all my pain medication. I had to go “cold turkey” as they would not prescribe any pain meds due to the "war on drugs". The government in this country has gotten out of control and confused patients with drug abusers. I have never, in my life, abused my medication. The longer I have been in this state the sicker I have become. I have had to travel to Indiana to seek medical attention, and find a decent rheumatologist, and I thank god for her every day. It took me a year and a half to find her and she basically saved my life.

I have also been experiencing TIA's and see the head of Kentucky Neuroscience Institute at the University of Kentucky stroke center. This past summer, I was also diagnosed with spondylosis of the spine and neck, osteoarthritis, and degenerative arthritis of the hands and feet. My migraines have also been giving me a lot of trouble as now I am having hemiplegic migraines. They are dangerous and the last one I had, felt like I had had a stroke and the ER did nothing.

To top everything off, I am now waiting on another biopsy of a tumor. Yep. They found a tumor in my neck which is probably lymphoma. They ruled out adenoma but now the oncologist is second-guessing it, even though they spent seven weeks ruling it out. So, we are going to do a second biopsy even though the first came back showing cancer and on December 18th 2018, they will remove it and I will find out if I need to undergo chemotherapy.

Due to me having to go cold turkey, as I was refused my pain medications when I moved from Texas to Kentucky in January 2017, I became a member of the C-50 National Pain Advocacy Group in April 2018.

C-50 was founded by Valorie Hawk in December 2017 due to the events of the last 8 to 10 years that led to a national narrative change to a point where pain patients were blamed for the opioid crisis. Chronic pain patients have been losing their pain meds, me included, and we have decided to take back our rights and the rights of our doctors – we realized that it was time to take things into our own hands. The CDC had a group of addiction specialists create what became known as the CDC guidelines. Although they were only meant as guidelines for primary care opioid naive patients, they became the basis for state laws severely restricting a doctor’s ability to prescribe and this has happened in over half the states with more in the process.

At C-50 we are fighting to change this narrative. We expose the reality, that the doctors who were prescribing to chronic pain patients, weren’t the ones fueling the opioid epidemic as our government and media portrayed. C-50 work on a state and federal level as well. Our members advocate to change state and national laws as well as to correct the national narrative.

Here is the deal. We are our own person. No one is going to fight for us but us. Never back down. You fight for yourself because you have rights. No one will do it for you. As a patient, if you feel you are being treated unfairly you can ask to speak to the patients rights advocate at the hospital you are in and file a complaint. Did you know there is a Patients' Rights Advocacy Program in every state government and you can file against every hospital in every state? Call and file a complaint! Make your voice heard. YOU MATTER! Your life matters! Don’t ever forget that! For as long as I can, I will continue to fight for everyone. - Much love to all, Peg

Support

If you wish to learn more about the work at C-50 visit their website, Facebook page or send a request to join C-50 Coalition of State Pain Advocacy Groups - National Facebook group.

If you would like to connect with Peggy to discuss lupus or any of the other conditions mentioned here, you can find her on Twitter or you can send us an email and we will forward it on. You can also catch up on some of her posts from 2015 at It’s Another Lupus Kind of Day.