My Story
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I am one of 5 million people worldwide living with Lupus.
Lupus causes your immune system to believe your own body is a threat, to attack itself, causing other significant health problems. I have several diagnosis in addition to Lupus--Addison's Disease (adrenal failure), Hypothyroidism, Interstitial Cystitis, Chronic Neuropathic pain, Hip Dysplasia, Myasthenia Gravis, Diabetes (type 1, pancreas removal), anxiety disorder. One day I may feel strong enough to visit with family or friends and the next day I may wake up unable to walk or grasp or write or find words. Living with Lupus means living with pain and extreme weakness and fatigue and having a large portion of your life revolve around doctors, medications, therapies, and procedures & surgeries. I've had dozens of surgeries--a total hip replacement, 3 spine surgeries, and in 2016 pancreatic & uterine tumors led to the removal most of my pancreas, my uterus, spleen, gallbladder, a portion of intestines, (abt 50) lymphnodes and enough surrounding tissue to get clean borders. I'm still, years later, recovering & working on pain management.
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Prior to being diagnosed with Lupus, I was a junior high teacher. I loved teaching--I worked hard to become a teacher and worked even harder to be a great teacher once I was hired full time. I had a lot of success and wouldn't have given it up for anything in the world. Unfortunately due to the level of my Lupus symptoms and the disease's continuous breakdown of my body, I was forced to leave teaching in 2009 & am still unable to teach. I miss it every day.
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I've always loved anything creative and crafty and the online DIY world is a way for me to explore, share, & learn even when my body needs to rest. When I was physically less limited I was able to do more projects. As my health has deteriorated, my husband (the love of my life, my best friend & biggest supporter) stepped in and built, painted, restored, and made my ideas come to life in addition to cooking, working, and taking care of our dogs and me. (I told you he's amazing right?!) My siblings and friends have also helped me with both projects and life in general. The projects featured on lovesissy.com have been completed over many years with a lot of assistance. These are projects that are special to me because they were created for, by, or with the people I love. If you were to visit my house or my family's houses, you'd spot most of the projects on this site. Other projects were donated to support great causes. I love to support as many fantastic causes as I can. Please visit the bottom of this page to see causes that are close to my heart.
I am married to the love of my life and his constant, unwavering care & support is everything. My siblings are my best friends. We've been through a lot together, including the loss of my niece (stillborn) & nephew (at 6 weeks) & I'm grateful that we're taking on life's challenges together. (If you'd like to know more about the story of my niece & nephew, please click here.) I am lucky in a million ways & although this path is difficult I would walk it (or wheelchair it!) 10 times to get to spend this life with the talented, kind, & patient people that surround me.
updates
WHEN I DID MY 1ST UPDATE IN 2013, I HAD NO IDEA HOW MUCH MORE WOULD COME... IT'S A WHOLE LOT OF READIN'! IT ISN'T EVERYTHING, BUT IT DOES GIVE AN IDEA OF WHAT IT'S LIKE TO LIVE IN A BODY THAT CAN DO ANYTHING AT ANYTIME. THE MOST RECENT UPDATE IS AT THE BOTTOM. SCROLL DOWN IF YOU'RE WONDERING WHERE I'M AT NOW (OR LOOK ME UP ON INSTAGRAM (craftysissy)--I'M MOST ACTIVE THERE.)
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December 2013: Currently I'm physically limited. I am having difficultly walking & use crutches, a walker, & a wheel chair to move about my world. I'm throwing everything I have at this issue--acupuncture, dietary changes, yoga, meditation, physical therapy, medications, procedures, injections, etc. The process is exhausting and difficult, but I am determined & I am making progress. I am also determined, regardless of where I am physically on a particular day, to live life the best that I can, to handle challenges with humor & grace and to be loving and helpful.
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May 2014 Update: After nearly a year, guess who can walk on her own again!? me! This marks the 2nd time I've gone from wheelchair to walking, so far, in this Lupus life.
July 2014 Update: I still use the walker or cane on some days, but I can walk without them short distances too. I'm in physical therapy 3-5 days/week and am just doing what I can with what I have on each day. Part of my physical therapy includes anti-gravity hammock & Yin Yoga at Pilates Plus of Schaumburg. I'm not flipping around, flying, or twisting myself into a pretzel. I'm using the hammock to take pressure off my joints & spine so that I can slowly and gently build core strength (private lessons, beginner class, & restorative class) and Yin Yoga which is the opposite side of yoga--the side that works on relaxing the muscles and stretching out the fascia to eliminate pain. I have tried a lot of types of alternative medicine & physical therapy and most provoke and aggravate my body. These activities (in addition to the gentle physical therapy I do at RMS physical therapy with Earl Gunther & Jeanne (myofasical release artist!)) do not provoke an awful immune response & do not make me feel worse before feeling better--they ONLY make me feel better. I didn't know that was possible until finding these types of therapy. December 2014: My situation is difficult & I'm not walking on my own. I have severe disc herniations at L4-L5 & L5-S1. The most severe at L5-S1 has not only herniated out (they can herniate outward either forward or back), but has come out to the left & the right wrapping around the S1 nerve on both sides. There is arthritis in my spine on the other side of the S1 nerve and in many of my facet joints. My S1 nerve is being pushed on from all sides and at times is being "strangled" or constricted causing damage (temporary or permanent-we can't say yet). This same scenario, to a lesser extent, is happening at L4-L5. I'm having a procedure tomorrow, on Christmas Eve to inject medication directly into that disc and area to see if we can get some of the inflammation to go down & if that helps take any of the pressure off of those nerves (and to see if we can get the disc to retract back into where it belongs at all). This is a long shot & a temporary measure at best. I'll have spine surgery, but I'm meeting with several doctors to figure out what type & how to safely go about surgery--having Lupus & Adrenal Failure there are many other things to prepare for with surgery. Symptom wise, I'm experiencing all sorts of nerve interference. Very odd symptoms. Everything from burning in my big toes, to left sided weakness. Loss of control of certain fingers or temporary "gaps" in control of portions of my legs. I drop things constantly, trip & fall easily, and am back to really needing the support of a walker, but at present, I need to lay down in neutral spine as much as possible to ease the constriction of my S1 nerve (and L4,L5 nerves as well), so I'm not doing much walking. I've had to stop all PT, yoga, etc. I'm still going to my PT appointments, but they are monitoring my nerve damage and helping me compensate for the interference I'm having vs. true PT right now. I appreciate every good thought & prayer sent my way. With these things, I could either get upset, pitch a fit, get angry that I'm facing another big & scary thing (that may ultimately end up in me permanently needing a wheelchair) or I could learn & grow. I have experienced many small miracles. This year I went from wheelchair to walking and I started out the year with the beginnings of liver & heart failure and paralysis. I'm ending the year able to walk and with a perfectly functional and healthy heart & liver. I've also learned that somehow (there's no great explanation for why), my right hip looks beautiful & in tact. I may not need to have it replaced anymore! That's a miracle. So miracles happen. Lupus, by definition is going to be a series of attacks on my body (which are also attacks on your mind & spirit). If I'm going to continue to grow and progress, then I need to mentally stay steady & calm and believe. And I BELIEVE! I'll keep you posted and let you know when I've overcome this latest obstacle! February 2015: Had surgery on L5-S1 (lower spine) at Lutheran General hospital.
August 2015: February's surgery helped, but not fully. After 6 months of trying to heal + physical therapy, I wasn't able to walk without devices (cane, walker, wheelchair depending on the distance). There was an incident that occurred that caused severe injury to my lower spine and I had to be admitted into the hospital and needed another surgery at the same place--L5-S1 (lower spine). I had surgery at the same hospital with the same doctors as before. Immediately after surgery, in recovery, I did not receive proper care and it caused me immense trauma and pain (and as of 2/2016, some remaining damage & symptoms). HERE IS THE FULL STORY, if you'd like the details: The same disc that was operated on in February had herniated from the left side, but so badly that it herniated all the way around until it was also touching the nerve on the right. This hospital visit was very different than my previous visit. This one was an emergency admission and the other was planned, so that may have contributed to errors being made. There were decisions made that were questionable, but medicine isn't black and white and I understand that everyone is doing the best they can in the moment. So many of the decisions that were made that ended up causing me difficulties, I'm not mentioning in this post (or in general) because the world is an imperfect place and you have to be compassionate and reasonable about some level of mistakes or difficulties. However, there are 2 errors in particular that I cannot find justification for and that have caused me both physical and mental pain that I'm still trying to recover from. 1) I was accidentally given Lovenox, a blood thinner, by a nurse, seemingly without orders (can't find them yet) to do so directly before surgery and lost a large amount of blood. This caused me to bleed heavily during surgery, but also caused heavy vaginal bleeding. I have, for years, had issues with excessive and irregular bleeding which is well documented. The Lovenox turned on a switch and it was less of a menstrual period that I had and more of something out of a horror movie. A ton of very thin blood. 2) The nurse in recovery (recovery = immediately after surgery, waking up from anesthesia, getting stabilized to then move into a regular hospital room) decided to, on her own, without orders (which are required) insert a urinary catheter. Because of my anatomy & my bladder disease, I'm a no catheter patient. This is also well-documented in my medical history & chart. I've had every surgery, including hip surgery, without a catheter. They are not necessary. She, however, said it would be easier if I could lay flat and bleed and pee that way instead of the staff helping me to the toilet. However, a catether, to someone with I.C. (Interstitial Cystitis) along with Hunner's ulcers & someone with my level of I.C. is the true definition of Hell. I cannot describe the pain. My body physically could not stay still. It was jumping all over the table. I could not see--My vision began white and then went dark. I could somewhat hear, but couldn't make out or understand what was being said to me. I believe that I was screaming and crying, but it was unlike any experience I've had before and being unable to see or process my own words or the words of others, I can't tell you exactly what it looked like. I begged and begged for the nurse to take the catheter out. She lied and & said she needed a doctor's order. (Note: You DO need an order to put a catheter in, but you DO NOT need an order to take one out. A patient can ask for their catheter removed or can refuse a medical intervention at any time.) I tried with everything I had in me to do anything she asked me to do. She continuously gave me arbitrary "benchmarks" to try to reach, telling me that if I just did ______ she would take the catheter out. Some of those were--if I stopped crying, if I stopped talking, If I slowed my heart rate down, If I stopped making the alarm on the heart rate machine go off, if I took larger breaths, I if stopped the spasming & jerking of my body. She made many comments about me being an uncooperative and bad patient and that if I was more cooperative, I would be in less pain. She made many comments about how I was causing myself the elevated pain levels. I tried, in every way, to explain to this nurse that I have Addison's Disease and this type of stress on my body alone could kill me and that I have the bladder disease and she needed to get the catheter out now--not only because of the pain, but because it's harmful and will rip and tear at my insides, which it did, and for weeks I've urinated blood and what look like small chunks of flesh. I apologize for the graphic nature of this post. The catheter was in for approximately 2-3 hours. My surgeon happened to walk by and I saw him and screamed out to him and he, in a raised voice, yelled to the nurse to take the catheter out immediately, which she did. I wanted as far away from her as fast as possible so I asked them to send me immediately up to the ICU (where by this time they planned on sending me b/c my vitals were so terrible & so much blood was lost--that was not the plan before surgery or as I was leaving surgery. That became the plan because recovery went so terribly). I believe this nurse wanted about as much to do with me as I with her, so they did get me up to the ICU floor very quickly. I jumped off that bed and got on the toilet and started trying to urinate. The problem is that in order for a person (normal person) to urinate your urethra must relax. Your bladder, a muscle, tightens and pushes the urine down. The urethra keeps the urine in your body unless you tell it to relax and then it relaxes and you pee and all is right in the world. I was unable to relax my urethra, but my bladder was in spasm. This happens because of the amount of pain I was caused. Both bladder & urethra spasm. Bladder is pushing urine out, urethra is pushing back. Acid in the urine and full bladder is touching all those ulcers and the fresh damage just done by the catheter. My husband and mom were in the room and I just grabbed them and bawled and asked my husband to tell the nurse what was happening--he's been with me for all of these 15 years with this bladder disease from hell--he's also a Paramedic and has a concise way of explaining. The ICU nurse listened and started the only treatment I know of to get the urine out--valium. We learned this at Mayo Clinic. 10mg of valium for the first dose and then 5mg 3x/day until you're able to urinate on your own again which usually takes weeks. I was on that toilet for hours getting the urine out dribble by dribble, but we did it. This incident caused me to have to get up to urinate 2-3 times per hour, with each time taking 10-15 minutes to fully urinate. This went on for days in the hospital and then at home. I urinated blood and those flesh pieces daily for 3 weeks and intermittently for months. This surgery was semi-successful, but not fully. We don't know to what extent the errors in my care immediately post-op in recovery played a role in the lack of success with spine surgery #2. Also, I had nerve & neurological testing performed at the University of Chicago and I have permanent nerve damage down my right leg & foot. September 2015: Spine Surgery 3--same disc L5-S1 This time the disc herniated on the right side, but it also pulled a big fragment of cartilage with it and both were pressing against a major nerve. There were also many small pieces of cartilage that came loose and pressed on other nerves when the disc herniated. This surgery was performed at the same hospital as the last one, but this time I had MUCH better care. The surgery was done without a catheter, my pain was managed better, and the nurses and staff were caring, kind, and treated me well. October 2015-March 2016: Appointments with all regular docs, post-spine surgical docs, and specialists (neurologists & uro-gynecologists). I have a polyp in uterus that needs to be removed, but that procedure will need to wait. My health began to decline further with the short summary being that my abdomen was huge, I became less and less able to eat, had digestive problems and a variety of other painful issues. After many appointments, testing, and repeat testing, we found that I had tumors on my pancreas. The tumors were growing rapidly & on February 18, 2016, I had them removed. Because of the damage done both by the tumors and by the removal, I also had most of my pancreas removed along with my gallbladder, spleen, duodenum (intestines), omentum (stomach tissue), about 50 lymphnodes, various ducts, & surrounding tissues. The incision runs from my sternum to my bellybutton (with 2 large horizontal internal cross abdominal incisions along with a few smaller incisions for drains.). The surgery was complex and parts of my digestive system & remaining organs needed to be moved/relocated/reconnected. During surgery the doctor found my gallbladder had previously failed & was necrotic(dead/decomposing). April 2016: I'm 6 1/2 weeks post-op right now and am just able to sit up at the computer to write this update. Two pages of "parts" were removed from my body, everything was biopsied, and everything came back benign (one tumor was a benign cystadenoma)-negative for cancer. With how things appeared going into surgery and with what things looked like during surgery--this was an unexpected finding. We expected cancer and I am deeply appreciative that I don't have to do chemo/radiation. This is, hands down, the hardest surgery & recovery I've ever been through. I'm fighting and praying and am as determined as ever to be well, to do good, to love with all my heart. July 2017: In November (2016) I had a hysterectomy (uterus & fallopian tubes) due to typical growths (cysts & polyps) and some additional tumor activity with a rapid growth rate. I am still deep in the recovery from both surgeries. My body is working on adjusting to all of its missing parts. I am still working on eating. I have an extremely limited amount of foods I am able to eat, especially solid food. I've also had to (with doctor help of course) readjust or change nearly ever medicine I take (& am unable to take many that were previously helpful) because my body just doesn't process anything like it used to or with any consistency. It's very strange... I'm still, 1.5yrs after "the big surgery", trying to figure it all out. Eating & moving, & existing is extremely painful. My abdomen/tummy = OUCH! That's the nicest way to put it. Doing all of this along with Addison's Disease (adrenal failure) has been particularly hard. After having AD for 12 years and being really good at managing my adrenal levels most of the time, I feel like a newbie again. It has been really hard to avoid Addisonian Crisis' and to keep my levels safe and consistent. In March (this year, 2017) I was put on oxygen. I've just completed a lot of testing at RUSH Univ. (they're REALLY great!) & my heart & lungs are healthy and strong (except for just a small part of my right lung being collapsed). My "stats" and health markers are pretty good too. There is no obvious explanation for needing oxygen, but through the detailed Pulmonary testing at Rush it was determined that the pain from tumor surgery, from the swelling & inflammation, & the pain in my stomach and digestive system have had an effect on my breathing. Basically I'm not breathing deeply enough because it hurts. I can override this for a breath or a few for tests or short spurts, but you can't override it constantly, so the answer is to get better pain management (mine has really been very poor for the past 12 months... I'm working on this now) & to continue to heal/let time pass/work with my doctors to address whatever we can and any issues that come up. My body is adjusting and figuring this all out. It's going to be a long process--estimations of about 5 years+. But it's hard to estimate because I wasn't a predictable patient before surgery. I am an autoimmune case. A challenge. A surprise. Various things have already popped up--an additional thyroid issue, needed Venofer (iron) infusions for anemia, some different nutritional & vitamin issues. I am doing everything I can to be as healthy as I can be. I drink my "food" each morning--vitamins & super foods & such to get all the nutrients in that I miss because I can't eat most things or very much of what I can. I have a wonderful caretaker and friend that takes incredible care of me & makes me laugh while my husband is at work--firefighting and paramedic-ing, saving and taking care of members of our community just like he saves and takes care of me every day. I have my two sweet doggies, Maddie & Baxter. They're turning 10 this year. We adopted them over 9 years ago! They're both laying on/at my feet as I type this. I have a beautiful niece, Nina, who just turned 1! Her sister & brother in heaven must be a part of this beautiful child because she is just the most precious little piece of light and love. She is the happiest child I've ever known, smiling constantly. Her smile is huge and it is impossible not to want to see it again & again. Life is hard. Really hard. It's scary. I have no idea what's coming next. But it's also really good. And really beautiful. And full of love. And oh my gosh do I LOVE love. I'm hoping my next update is much less dramatic than the past few & while I'm waiting to see what happens next, I think I'll have a snack and pet my sweet doggies. Sending love to you all. <3 Dec/Sissy |
October 2018
The bit of pancreas I have left isn't enough & I'm now a Type 1 diabetic for life. I started medication, but no insulin right now. Metformin right now & we'll go to insulin down the road when that isn't enough. I've made slow, but steady progress in my strength & Myasthenia Gravis symptoms this year. Since "guts surgery" (that's what I call it--when I had a bunch of my organs taken out b/c of pancreatic & uterine tumors), my body doesn't process pain medicine well. Also, the surgery itself created a huge amount of pain to pile on top of the pain I was already in. 2017 & 2018 has been pain filled. Pain, pain, & more pain. And all the things I've done for years to attack chronic pain--nerve blocks & surgeries & treatments & meds & medical MMJ & meditation & supplements & PT & blah blah blah, are not even close to touching the pain level I've been in. After 8 months of work, I got into the Rush Univ pain clinic & I've been with them this year. I've had some nerve blocks with them (nerve blocks aren't working for me anymore--they're not effective enough to make it worth it & I started having major reactions to the steroids & that reaction increases with every block. I've had probably near 100 blocks throughout the past 13 years. They're painful, but were absolutely worth it when they worked. So we moved on & I had a few trials of 2 types of neurostimulator spinal implants. Then, I had a permanent implant placed in August. I am officially healed & now we're just looking for settings that lower my pain level. I haven't had as much success as I had in the trial yet, but I have had some success and for many people, the road with an implant is long. The longer it's in, the better it has been working. (It sure has gone better than the 1st two times I had a neurostimulator put in. Did you all know I had one of the 1st versions of a spinal implant in 2004 & again in 2005. I didn't know I had Lupus then & I wasn't on any meds to suppress my immune system, so my jerk of a body pushed the battery packs right back out of my body both times. It wasn't pretty. I have massive scars. I've been sliced & diced and at this point I don't count surgeries or scars anymore. Thinking I should be a ragdoll this Halloween. ;)
I'm trying my best. Working hard to live.
If you've read this far though, you know I've never stopped fighting, so don't count me just yet. You can count a hole pile of my organs out, but somehow this girl still exists.
Sending so much good stuff to you all. so so much good stuff. <3
Love,
Sissy
The bit of pancreas I have left isn't enough & I'm now a Type 1 diabetic for life. I started medication, but no insulin right now. Metformin right now & we'll go to insulin down the road when that isn't enough. I've made slow, but steady progress in my strength & Myasthenia Gravis symptoms this year. Since "guts surgery" (that's what I call it--when I had a bunch of my organs taken out b/c of pancreatic & uterine tumors), my body doesn't process pain medicine well. Also, the surgery itself created a huge amount of pain to pile on top of the pain I was already in. 2017 & 2018 has been pain filled. Pain, pain, & more pain. And all the things I've done for years to attack chronic pain--nerve blocks & surgeries & treatments & meds & medical MMJ & meditation & supplements & PT & blah blah blah, are not even close to touching the pain level I've been in. After 8 months of work, I got into the Rush Univ pain clinic & I've been with them this year. I've had some nerve blocks with them (nerve blocks aren't working for me anymore--they're not effective enough to make it worth it & I started having major reactions to the steroids & that reaction increases with every block. I've had probably near 100 blocks throughout the past 13 years. They're painful, but were absolutely worth it when they worked. So we moved on & I had a few trials of 2 types of neurostimulator spinal implants. Then, I had a permanent implant placed in August. I am officially healed & now we're just looking for settings that lower my pain level. I haven't had as much success as I had in the trial yet, but I have had some success and for many people, the road with an implant is long. The longer it's in, the better it has been working. (It sure has gone better than the 1st two times I had a neurostimulator put in. Did you all know I had one of the 1st versions of a spinal implant in 2004 & again in 2005. I didn't know I had Lupus then & I wasn't on any meds to suppress my immune system, so my jerk of a body pushed the battery packs right back out of my body both times. It wasn't pretty. I have massive scars. I've been sliced & diced and at this point I don't count surgeries or scars anymore. Thinking I should be a ragdoll this Halloween. ;)
I'm trying my best. Working hard to live.
If you've read this far though, you know I've never stopped fighting, so don't count me just yet. You can count a hole pile of my organs out, but somehow this girl still exists.
Sending so much good stuff to you all. so so much good stuff. <3
Love,
Sissy
Causes & organizations I support
The Lupus Foundation, Jayne Lenderink's "WOLFPACK" who walk for a cure every year for the LFAI, The Asher James Congenital Heart Disease & Thrombosis Foundation, Olivia's Blankets & Sawyer's heart for stillbirth/infant loss parents, Channohon's Light up the Night for families of stillborn/infant loss, Lurie Children's Hospital, dog rescue & adoption organizations including PAWS Chicago, GLIWA (Great Lakes Irish Wolfhound Association), S'Wheat Wheaten Terrier Rescue, the two humane societies my dogs are adopted from-Elkhart County Human Society & Champaign County Humane Society, Hearts4Paws, The Iraq & Afghanistan Veterans Association, GLAAD, RAINN, St. Baldrick's, St. Jude's Children's Hospital, The Schaumburg Fire Department Benevolent Association and their yearly softball tournament to support the Loyola Burn Center & the Schaumburg Food Pantry, The IAFF (Illinois Association of Firefighters) along with Local 4092 and the Pink Tie Ball held yearly in October to benefit our local cancer center at St. Alexius and The American Cancer Society and many more... I love to support as many fantastic causes as I can.
