Tag Archives: lupus

Kathleen’s Lupus Survivor Story

lupus survivors imageMy name is Kathleen. I’m living with systemic lupus. I was diagnosed in 2005 with

lupus and have been on Benlysta since 2010. I’m struggling every day with pain, fatigue and worry about my future.
I can’t work anymore because of my disability. But I don’t let it stop me from living my life. I’m into adaptive sports like scuba diving. My insurance has increased 51% in the last two years and it’s been difficult for me on a fixed income . I’m a cancer survivor and I miss driving and I honestly feel that what doesn’t kill me makes me stronger and sometimes I feel like the strongest person in the world. And other days I feel alone and lost. But I have discovered an entire world on Twitter of other lupus warriors and lupus survivors .
I hope to help raise awareness about Lupus and maybe one day there’ll be a cure. I have no family support but I have a service dog named Iris who helps me everyday.

Denise’s Lupus Survivor Story

Hi, my name is Denise I have Lupus (SLE) since 2004, I also have Sjogrens, Raynauds, RA, Diabetes, OA, Neuropathy, DDD, Herniated disk in my lower and upper back, I have sleep apnea too. I have thyroid problems and been having seizure symptoms and TIAs since 04 I was in and out of hospitals because of it. I was on Gabapentin for 6 years and my Neurologist said he, would wean me off it because he thought maybe that was why I was having the symptoms of TIAs and Seizures. Well, he was right I am so glad I got off that medicine I have not been in the hospital for over a year since being taken off that medicine. I have been in and out of a wheelchair since 2003. Since 2011 I have been back in the wheelchair. I used to dance ballet and Jazz and tap for 20 years. I fought for SSDI it took two-in-a-half years to get accepted.

In January 2013 I had a Radical Hysterectomy. Because they suspected I had uterine I think of all the changes in my life through the years and sometimes I feel like it is not my life, sometimes I wake up in the middle of the night and think this is a nightmare, but it is not, it is my life. I have had to accept it. Writing helps me accept my life as it is.

I wrote my story to let others know that no matter what you have been through, that you can make a good life for yourself. I share about being abused and being a survivor. I share about my sobriety. I stopped drinking in 1995. I share about finding my birth mom. I share about my loving husband. He is such a sweet heart. My husband and I met before I was ill. Are relationship has been wonderful and very hard because of Lupus, I feel our relationship is growing stronger because we both take time for each other and we listen to each other. Lupus has taught me to communicate and talk things out better. Communication is important; I have a peace in my life today.

I am a Lupus advocate here online. I enjoy sharing with others helping others. Life is short so I feel we should enjoy each other’s company and help each other. God brings the right people into our lives for a reason. To read my story. “Thank you God. One Lady’s Journey Within.”

Here is my new blog Where I share poems and more.
The reason I write is because I want to share with others that no matter how bad our life may have been we can have a good life. We are able to live and be happy. I am so glad to be able to share with you. Denise Love

Carlotta’s Lupus Survivor Story

Susie-Leather-Headshot-2-webI am a Lupus survivor for almost 30yrs. Diagnosed in 1985. Since then, I have also developed FM & Raynaud’s. I am also a cancer survivor having lived through Thyroid Cancer as well as Breast Cancer. While I am a survivor, my cross to bear is the fact that my precious daughter did not survive this disease, succumbing to it at the age of 24 in 1999. So, my survival story is more a story of living my life to honor her, to be someone that she is proud of, and, of

most importance, to helping others who suffer from this disease and any other autoimmune disease.

I run an online support group www.wehavelupus.com, where we have been providing support, comfort, information, and understanding to anyone suffering from the 60+ autoimmune diseases. I dedicate many hours to this site, as well as to the sister site on Facebook. Lupus is such a heinous disease and affects each of us differently, my goal is to increase awareness as well as to provide understanding and support.

I pray for a cure, but until then..I pray for pain-free days for each and every one of you!


www.wehavelupus.com

Angie’s Lupus Survivor Story

lupus survivors imageMy name is Angie and in the 90’s I was diagnosed with Lupus. It was actually very fast. I went to my Primary Care Physician three months in a row with the flu and flu like symptoms. He decided to run some tests and on my follow up appointment he sat me down and said, ” all your lab work is great, excellent but you tested positive for Lupus we also did an EEG let’s get it and look at it.” When he came back he told me everything on the EEG looked great except my theta waves are hitting while I’m awake. I just looked at him for about a minute let it absorb then told him I’m really glad he didn’t do a pelvic exam because everything else is broken. We both laughed https://www.cialissansordonnancefr24.com/ and it took the tension out of the room which was a relief. Then he explained what Lupus was and how it would change my life and I started slowing falling down the rabbit hole. When I finally hit bottom I was confused, scared and felt so relieved to know I was [not] actually crazy there was actually something wrong with me. So my PCP (Primary Care Physician) set me up with a rheumatologist. Mistake. You know what I mean if you have ever been to one before. We are the red-headed stepchildren of rheumatology. Especially back then. When I went to the appointment it felt like everything was spinning out of control. The doctor came in asked a few questions but didn’t give me time to answer and didn’t allow me to ask any questions and I had a lot. Then he handed me a script and left. No instructions. No information on side effects. I had no idea what to expect. So I started falling further down the rabbit hole. More like spiraling. Like a good patient, I got the scripts filled. Methotrexate, Plaquenil, and quinacrine. I had no idea what I was getting into. I started taking the medication and here came the rabbit, “Read the directions and directly you will be directed in the right direction.” All I was thinking was It would be so nice if something would make sense for a change. I didn’t need to read the side effects because I had everyone. The medication was worse than the Lupus.

I was working night shift and I always took the methotrexate before I went to bed on Thursday. I had already gone to sleep when the vomiting woke me up. It was so severe I was urinating on myself. I didn’t realize my daughter who was six had stayed home from school because she was sick. She walked into my bedroom and just stood there. In shock. She finally started crying asking mommy what’s wrong with you. At that moment I decided the medication wasn’t worth it. I choose quality over quantity when it came to my life with my children and would make the same the decision again. So I pulled myself out of that rabbit hole and back into the real world. Not realizing what it was doing to my body. Back then most people had never heard of Lupus nor how dangerous and deadly it can be. So I went about my life trying to forget about that rabbit hole. I would have the joint pain and headaches but push through it. The fatigue made daily life extremely difficult but what choice did I have. I had three beautiful babies that depended on me. I went back to my PCP and he wasn’t happy but he gave me a little advice I’ve carried with me. Prednisone, which may make you feel normal again will take years off your life. Stay away from it when you can. I will follow that advice the rest of my life. I am actually one of the lucky ones. Most people go years without knowing what is wrong and by then the damage is done. I at least had a choice. So this is the beginning of my story and how I have learned to live with Lupus.

I am now trying Benlysta. Having some pretty severe side effects today. But I have faith. It will work. It has to work I have severe CNS Lupus with Dementia, meningitis, encephalitis, and cerebritis. So it has to work.

Regina’s Lupus Survivor Story

lupuss urvivors imageI was first diagnosed with lupus in 2010. Although I had 3 positive tests, my doctors insisted that I did NOT have lupus and further tested me for other collegan diseases. I also have RA, OA, Raynauds and Colitis. This came after being mis-diagnosed with MS and Multiple Myeloma; both mimic Lupus. After my doctors mis-diagnosed me, I realized I needed to become my own advocate and find a new rheumatologist and neurologist.That’s when I wanted to become an advocate for other lupus patients. In the beginning of my disease I was really sick and didn’t know how I was going to take care of my then 1 year-old and 3 year-old boys. My husband jumped right into action to help. I found that support from family and friends is key to a chronic disease because depression runs so high with lupus. Today, not only am I a lupus survivor, but I’m a co-founder of a “YOU” Can’t See Lupus online support group (Facebook). I write a blog describing what it’s like to live with lupus on a daily basis along with the daily challenges that come along with the life events. I mentor other lupus patients on how to be their own advocate, where the lupus patients can locate

their resources and how to utilize those resources. It’s my mission to bring daily awareness and educate others on lupus. I reaffirm to myself and others that we will not be defined by our diseases.I have found that if I find one thing that I’m grateful for daily and with a positive attitude my life has been better and will feel better. To me, quality of life is everything. I chooses to feel and look better; “But You Don’t Look Sick” sticks with me and really,, who chooses to look like how they feel, not me! Lupus has taught me a lot during this journey also. I look at life in a different light and don’t take things for granted. For the past 2 years, my dear friend and I have (she’s done it for 3 year but I jumped in the last 2) run the Annual Crystal Lake Lupus Fundraiser. The money we raise benefits the Lupus Foundation of America. We decorate downtown Crystal Lake in purple ribbons, the local stores and community donate baskets and gifts that we make into raffle baskets and we raffle off the items. Last year we raised over $16,000 and this year our goal is $20,000! We don’t stop at May by spreading awareness, for us it’s 365/24/7!


“YOU” Can’t see Lupus Living with LUPUS – A day in the Life

Scott & Amanda’s Lupus Survivor Story

lupuss urvivors imageMy wife Amanda was diagnosed with Lupus six years ago. That is when life became real. She had symptoms prior to that but that day her agony was given a name. She was quickly put on several medications and we tried to learn as much as possible about the disease. As a husband, I naively thought that the medication would magically cure her pain; as it were strep throat or some minor illness. As you probably know, I was immensely wrong. Over time, her symptoms got worse. She struggled with severe joint pain, which consistently attacked the different joints in her body in a very inconsistent manner. Lupus would attack her elbows one day and then move around to her other joints with no apparent regularity. We always seemed to be one step behind the pain. Physical pain eventually mutated into attacking her mind and spirit. This was not the same woman I married. I could see the pain in her eyes and hear it in her words. She always looked defeated. As a husband, the disease attacked me as well but only mentally. It is so hard watching her in pain everyday. I tried not to think about it. In fact, when she was hospitalized for five days in intensive care, I could barely go to the hospital because I did not want to accept it. I was scared like a boxer dodging an opponent. At that point the disease had captured my spirit as well. I wasn’t cialis generique en pharmacie laughing or communicating with anyone, I was existing but I wasn’t living life It was hard for me to accept the fact that there was nothing I could do to make my wife better. In the past couple years, we were told we couldn’t have kids naturally. So we underwent five IVF treatments with no success. In the end, the diagnosis was the IVF was not working because of the Lupus. We were both devastated because we wanted so dearly to have a family. With each failure from the IVF came more disappointment. This was when we hit the bottom of existing and so we lived in stillness for about two years.

I am not sure what happened next or how it happened, but in the last year we stopped letting Lupus control our lives. We have turned to more natural remedies and activities. We do a lot of meditating, relaxation, and positive activities. This did not happen overnight and it continues to be an ongoing process. However, I am now facing this disease head on instead of ignoring it. When my wife is in pain, I lay next to her. When she is sad, I make her laugh. When she has no energy, I tell her I will give her some of mine. When she cries, I let her. It was scary for a while especially in the hospital as I I knew it was serious when the usually spunky nurse couldn’t tell me it was going to be ok. I had to dig deep in my soul and scrape the strength to face this fight. It has taken a while to gather each ounce of courage for it to make a noticeable difference but I have done it and it has made a difference in both of us. Now we have hope, courage, and love that will fight this fight. Recently, we were told there was one treatment we could try to combat the Lupus in regards to the infertility. We were told it was very expensive but hand in hand we just calmly looked at each other and said, “we will find a way” without words. So now we are raising funds to try this treatment and I don’t know if we will but I am willing to try because more than anything in the world, I just want to be a dad. With faith, hope, and love I think it will be ok. Rather I know.

I don’t know if anyone survives Lupus but rather we have learned to manage it. It was a steep learning curve but I would consider us Survivors. Last week we planted some vegetables, flowers, and herbs, and it is exciting to see if they will grow.


If you would like to assist Scott and Amanda please visit: http://www.gofundme.com/makeamiraclehappen

Kesha Dan’s Lupus Survivor Story

Throughout my life, I have always had problems with upset stomach depending on what I ate. I have had walking pneumonia at the ages of 19, 24, and 29. I had shingles at the age of 26. January 2007 I was in and out of the emergency room for what I was told was allergies from changing climates. I am from Denver, CO lived in Atlanta, GA for two years, moved to Tahlequah, OK and am now back in Denver, CO due to my lupus complications. While in Tahlequah, OK I had a terrible cough that would keep me up at night, spots on my face neck and arm that would itch turn red and then turn black. I went to the dermatologist the throat and ear doctor, and even had to go see an eye doctor because I started to get blurred vision. The physician I was seeing from January 2007 up until I was admitted into the hospital was treating me with Prednisone tapers for my allergies, but he would send me home each time. During this time I was beginning to get weak, I stayed in bed all day if I could and at this time I was working at the hospital from 6 am to 6 pm and going to school on the college campus from 8 am to 1 pm. I was losing up to 12 pounds a week. I was always swollen around my foot and ankles. During this time I was really into traveling and was going any and everywhere someone would say come to. I already had 11 tattoos and decided to get another one; (on the top of my swollen foot) I still do not know what I was thinking about. Long story short the tattoo got infected and I started running a very high temperature and could not keep food down. For some reason, everything I ate tasted awful and would make me vomit. I went back to the emergency room and was sent home once again with some medicine for nausea and my slight temperature and my foot infection. I would feel hot all the time but just thought I was coming down with the flu. When I received the nausea medicine it made me sleepy, so not only was I not eating, I slept through drinking too. One day early in the morning I woke up in a cold sweat, my whole bed was drenched. I had my sister pick me up and drop me off at the emergency room. The doctor I usually see was out that day, but they had me see his sister, she took my temperature 102.4 and checked my pulse and immediately started an IV on me for fluids. I was admitted by the infectious disease doctor because he thought the dark spots on my face were due to me having HIV. When that test came back negative that is when he started testing for everything else on the 4th day of my admission to the hospital. I was not diagnosed with Systemic Lupus Erythematosus (SLE) until the 16th day of my hospitalization. I had a bone marrow biopsy and a lymphoid biopsy that removed four from my groin area to rule out lymphoma. The bone marrow biopsy and two days of determination from a panel of physicians decided my life change and diagnosis of lupus. I was in the hospital for 22 days. I look back on this now and am just grateful for the life I am given each day. I am on disability and have had to put continuing online education to get my bachelors degree on hold due to lack of concentration, memory loss, and brain fog. I am unable to work full time and right now part-time work would be difficult because of recent complications that are happening due to lupus activity. I was blessed to receive disability benefits my first time trying but pay so much for medications, surgeries and hospital visits that my income is very limited and I am barely making it. I make sure I smile every day, and try to stay positive it is hard but this type of attitude helps.

Meghan Hartsell’s Lupus Survivor Story

Share your lupus survivor storySixth months after I was diagnosed with Lupus, my sister, parents, and I all caught a 24-hour virus. They got better, but I having fevers. I was hospitalized for a weekend to find the source, but they were unable to find one. My fevers started getting better, and I was released.
By Wednesday, the fevers were back. I began feeling weak and unable to stand up. I couldn’t stay awake for longer than an hour or two and felt extremely dehydrated. That Friday, I was asleep in my bed when my mom came running in my room. She had been about to go out to lunch with a few friends but had a horrible feeling in the pit of her stomach. Her instinct was correct. My temperature had reached 103.5. She rushed me to the E.R., and by the time we got there my temperature had reach 104.2. The nurse had to take my blood pressure three times on two different machines because it was so low she thought it had to be an error. I was immediately put on I.V.s and monitors, and…to improve. I found out later that the 24-hour virus had triggered Macrophage Activation Syndrome, which occurs mainly in younger Lupus patients. This syndrome caused my immune system to go crazy and attack my organs very quickly. It was destroying my liver by the time I got to the E.R. If my mom had left the house that day like she had intended to, I would have had a stroke or a heart attack and most likely would have been dead by the time she returned.
This all occurred a week before my 18th birthday.

It took almost a year for me to recover both mentally and physically. Now, my Lupus is under control and I hope to be in remission soon.

Kelly’s Lupus Survivor Story

I had already been diagnosed for several years before my 52 days ICU stint. I was officially diagnosed in March 2003 (systemic & discoid). I am only 24 years old but, I was 23 when this all occurred.

Truthfully, I was feeling fine until a couple of days before my 52 day ICU stay. I was running a temperature of 103 for 4 days and I didn’t really have an appetite (I was barely eating; the smell of food would make me nauseous). Bottom line, my doctors summed it up “my whole ordeal” to my Cellcept use and a flare. My use of Cellcept is what contributed to my stroke. I had fluid in my cerebellum and I had to have intensive surgery and a shunt brain drain.

I have really only been hospitalized 3 times due to my lupus ( May 2004…….4 days, September 2006…….12 days and my extended stay in June 2007) My doctors contribute my “recent health obstacles” to my use of Cellcept ( I was on this medication from March 2003-June 2007). I was on three 500MG tablets daily of Cellcept. Basically, since it’s NOT widely used in lupus patients (mostly transplant patients), you don’t really see a lot of information about individual experiences. I took 2 pills in the morning and 1 pill in the afternoon, 1500 MG.

When I was talking Cellcept, I had a fair experience, I cannot blame ALL of my side effects on the drug, I was more focused on working and complete my Master’s than going to my doctor regularly (I WAS PARTLY AT FAULT FOR MOST OF MY SEVERE MEDICAL ISSUES).

At first, when I was in the hospital I was taking 100 milligrams (IV) of prednisone.

When I was on Cytoxan for that short period of time, my doctors recommended that I stay on it for longer but, I would be sick for 3-4 (vomiting when I did eventually eat) days after my treatments so, I refused any more treatments with the support of my family after I was “stable”. I only received 3 treatments from June 2007-October 2007. I also had http://en.wikipedia.org/wiki/Plasmapheresis treatments.

I also had speech and physical therapy when I was in inpatient rehabilitation from the time I was discharged from the hospital ICU unit in August 2007 until October 2007.

No, I don’t work, truthfully I can’t work. I need to walk with the assistance of a walker. I have not driven in a car by myself since May 2007. I still have a valid driver’s license and my husband ( We had been dating for a little over a year before I was I diagnosed. ) does let me drive occasionally when he is in the car with me. I am still with in a going battle with disability (that’s a long exhausting story in it self). I have physical therapy 3 times a week and speech therapy twice a week. I am definitely much better than I was this time last year but, I am not 100% there.

Courtney’s Lupus Survivor Story

Share your lupus survivor storyI have SLE lupus, which it affected my kidneys. Hear is a little bit about my story with lupus: For me it was completely out of the blue! I was in the hospital in Nov of 07 with pneumonia and it was at that time the doctors noticed I was passing high amounts of protein in my urine. They did a series of tests and couldn’t find anything, so my family doctor kept an eye on things and sent me to a local kidney specialist. By Jan. of 08, I started to pass more protein in my urine and my creatinine number started to elevate. In Nov, my creatinine number was a .7 and by Jan. it was a 1.9. When the kidney specialist saw that he decided to have me get a kidney biopsy done. So I went to the hospital on Jan 28th so just an outpatient procedure, thinking nothing of it and by that afternoon I was getting admitted into the hospital and the doctor came into the room saying that I would be starting on chemotherapy the next day and high dosages of Predinsone (100mg). He told my family and me that I had lupus which affected my kidneys and that my creatinine number was a 3.9 and I was on the verge of dialysis. So to say the least I was scared to death! I went into the hospital feeling overall healthy. I was a little tired, but I just thought it was because I was working full-time and taking three classes in graduate school and doing an internship. I never thought I had a chronic illness!I spent a week in the hospital and that is when everything in my life changed. I had to quit grad school and my internship, and I was put on temporary disability from work. The doctors put me on cytoxan, and high dosages of Prednisone, along with 15 other different medications, Plaquenil is one of them. The prednisone has made me gain over 70 pounds within the past 7 months, and from the chemotherapy drugs I started to lose my hair. I am a very self-conscious person, so even these adjustments have taken a toll on me! As far as my hair, I have always had really thick natural curly hair, it was my best feature (in my opinion). So when it started to fall out in clumps, I decided to shave my head. That was scary for me, but it is starting to grow back in a little bit now and I am handling it alot better than I was.I am doing better now, my kidney function is around 50%, and my creatinine number is a 1.3. So I am very hopeful about the whole thing, (at least on most days) I will be honest with you, at the beginning I was devastated and very depressed. But I trust my doctors and I know one day I will get back to living as much of a normal life as possible.