Jodi Trosclair's Lupus Battle

My name is Brandy Volpi and I have created this page for my best friend Jodi Coolman Trosclair. For all of you that do not know Jodi Coolman Trosclair, she is my best friend and loving mother and wife and life just hasn't been fair to her. Jodi has been fighting Lupus (SLE), Fibromyalgia, Gastroparesis and that is just the beginning. She is having total hip replacement for both hips October 22 at age 30 and still every time I see her she has a smile on her face. I look up to this amazing woman. She is the strongest woman I have ever known. All donations received will go to her and her family to help cover medical bills and expenses that keeping racking up by the thousands with all of the medical complications she is going through. Any excess funds will be donated to someone else on GoFundMe who is also battling Lupus per Jodi's request. Below is her story to help give you an idea of the battle she is fighting. Please help spread the word and thanks in advance for all help that is given.


The Story of Jodi's Battle
I am a 30 year old mother and wife battling LUPUS (SLE), Gastroparesis, Fibromyalgia, Adrenal Insufficiency, Type 2 muscle atrophy in both legs, andservere stage 2 Bilateral Avascular Necrosis of both hips. I was diagnosed with Lupus in August of 2008. At 24 years old getting a diagnosis of an incurable autoimmune disease was quite a shock and very scary. Fear of the unknown seemed to take over at first, but after getting over the initial shock and doing research, reading books, getting as much information as I could about the outlook of my future, I accepted the diagnosis and decided it was time to start living. I stopped worrying about the little things; I opened my heart and have been able to love in ways I never knew was possible. I no longer know what tomorrow will bring, how I will feel, what my limitations will be, so enjoying life and treasuring every moment with the people I love became my new obsession. Leaving the dishes in the sink to play a board game with my son and husband was now ok. Taking a nap and skipping a social function because my body says it's what I need was hard to accept in the beginning but with the support of my family I learned it was ok. Focusing on the positive side was my new outlook. Learning what my limitations are has been the hardest obstacle. Having to stop and take care of myself instead of pushing myself to take care of everyone else is still a battle I fight every day. I have my good days and my bad ones, but overall my disease was pretty well controlled with various medications until 2010. I started vomiting every time I ate and lost over 15lbs in one month. Only weighing 120 lbs to begin with it took a huge toll on my body. After various test I was diagnosed with severe gastroparesis caused by my lupus attacking and permanently damaging the nerves and muscles in my stomach. Getting a diagnoses and treatment plan was such a relief; little did I know this was just the beginning of many complications yet to come. Medication before every meal and sometime after each meal has helped, but unfortunately I do still have my days where anything that goes into my stomach gets ejected right back out. A few months earlier in 2010 I had appendicitis and had to go through emergency surgery. Due to the immune suppressants I was on to treat my lupus flare this meant a 5 day stay in the hospital for intravenous antibiotics to ensure I didn't get an infection. Being able to retain nutrients again I built back my strength and was ready to face the world once again. In 2011 my lupus antibodies went through the roof and my rheumatologist informed me my lupus had started flaring. Severe fatigue, daily fevers, joints swelling, severe joint pain, and inflammation around my heart and lungs were just the beginning symptoms of this journey. I took things day by day and fought my hardest to work full time, be a mother, and a wife. Some days it took every ounce of strength I had to drag myself out of bed into the office, but I did it! Working through the pain, fighting the tears, I was determined I could win this fight eventually. After numerous different meds from chemo drugs, high dose steroids, weekly injections (Humira),immunosuppressants, antimalaria medications, you name it I tried it, nothing seemed to get my lupus back under control. In July 2012 I was forced to give up my full time job due to this flare getting worse and worse. I probably should have quit a lot sooner but I was stubborn and determined to overcome this flare without giving up anything. I refuse to let the disease control me! I have however learned that I do have to listen to my limitations and live within them. This doesn't mean I have to give up the fight, it just means I have to change my daily living to allow my body time to heal. After a five month long fight with my employee disability insurance I was finally approved for benefits. Finally I saw a little light at the end of the tunnel. I could finally rest and not stress constantly. I was sure this would allow my body to recover and pull me out of this lupus flare! Unfortunately when my long term disability started I had to take a 40% decrease in pay and lost my health insurance that paid the majority of my medical bills. My husband's employer does offer health insurance so I was fortunate to be able to have coverage through him, but it really only covers the basics so it made a drastic impact on our family with the increase in medical bills due to my health issues. My husband assured me we would be ok and that he would do whatever it took to ensure we could make it with me not working. I stayed optimistic and just faced each day as it came. Even not working there are still many more bad days than good, but I am able to rest and let the bad days come. I don't have to fight through tears to make it in to work. I can rest all day if that's what my body needs. I can take it easy during the day to have some energy to spend with my son and husband once they get home from school and work. I can push through and do fun adventures here and there because the crash my body will go through for 2 days or a week after is ok. It's not the life I thought I would be living at this age, but i have adjusted and face each day with a smile and hope for the best. I am just thankful for the good days. Thankful for the joints that don't hurt or swell on a particular day, thankful for the love and support of my family and friends! Hell at this point most days I am just thankful I wake up! LOL My husband has worked very hard to ensure our family is taken care of and we have everything we need so I do not have to try to return to work, but this year has really tested our ability and drained all resources. April of this year fibromyalgia was added to my list of diagnosis. To me this wasn't a big deal. It's just another autoimmune disorder that I will have to fight! Another reason for the bad days! I am strong willed enough that I know I can live with it! May of this year I started having severe muscle weakness that led to muscle mass loss and severe pain in both legs from the hip all the way down to the ankle. At this time I was forced to start using a walker, cane, and sometimes a wheelchair to be able to get around due to my legs no longer being able to hold up the weight of my own body. I have always been a very independent person so this was a big adjustment. I was falling constantly just trying to walk on a flat surface. Thankfully my husband didn't mind having to pick me up off the floor. I was scared to death. Within a matter of a couple of weeks I had lost most of the use of my legs. I am too young to be wheel chair bound was the only thing that kept running through my mind. I smiled as much as I could and tried to hide the fear, but deep down I was falling apart. My husband has been my rock. When my legs give out and I fall he is there to pick me up with a smile. When my arms don't work and I drop everything I touch, he is there to take over. When I break and fall to pieces he is always there with a shoulder to cry on. He tells me all the time he doesn't understand how I keep fighting and stay so strong, but deep down I think it's harder on him and the rest of my family having to watch me go through all of this and being helpless then it is for me to go through it! I tell them all the time that I would deal with 10 times of what am I am now if it meant they wouldn't know it or couldn't see me suffering. Its so unfair to me that have to watch everything I go through. It's amazing at the strength and love my husband and son have shown throughout this. So many people would have walked away, but my husband has held on a little tighter than before. After almost a month of my legs only getting worse I finally got up the courage to make an appointment with my primary care physician. I was so scared to hear that the issues with my legs were just another stage of my lupus and that the damage was permanent. I hoped and prayed that I would wake up one day and have use of legs again. Unfortunately this never happened. I went to my appointment scared to death expecting the worse, but my doctor said it's the steroids I have been on the last couple of years depleting my leg muscles. It was reversible! This was such a relief. So the game plan was to taper my steroids down slowly and once I was off of them I could start physical therapy and would slowly but surely regain use of my legs! I was ok once again! I wasn't worried how long it will take, I could handle being in this condition as long as I knew it would end one day! My spirit was raised and I was ready to face each day and do whatever it took to get back to a half way normal life. The first week of July during the process of tapering my steroids I had an appointment with my rheumatologist. When he seen the condition of my legs, they were literally skin and bones by this point. My calf muscles and thigh muscles where basically nonexistent. He immediately admitted me to the hospital. He explained that it was a possibility it was the steroids causing the issue, but with the amount of weakness and muscle mass loss he wanted to admit me and do further testing to be sure. He was concerned that I may have inflammation in my brain or spinal cord causing the issue. So here we go again back on the roller coaster ride. The fear returned. We thought we had answers, now we were back to square one. So after 4 days in the hospital, 6 MRI's, x-rays, and more lab work than should be allowed by law it was determined a muscle biopsy was needed to confirm what was happening with the muscles in my legs. I was discharged from the hospital as inflammation in the brain or spinal cord had been ruled out. All other testing could be done on an outpatient basis. I was relived to be back home, but still scared to death of the unknown. An appointment with a general surgeon was scheduled for the next week to have the muscle biopsy done. By this point I was exhausted. I had stressed and worried until I couldn't any longer. I was just ready to find out what the issue was so we knew what the future outlook was going to be. Two days before my appointment with the surgeon, I received a call from my rheumatologist informing me that some abnormalities in my hips were seen on one of the MRIs that was done while I was in the hospital. He scheduled a repeat MRI for the same day as my initial appointment with the surgeon. Having lupus I just thought it may be arthritis in the hip joints and didn't think much more about it. After meeting with the surgeon and getting the muscle biopsy scheduled for two weeks out, I went and had the MRI repeated. At this point I had put my thoughts back on the track of hoping the muscle issues were just being caused by the steroids and we would be back to our initial game plan of continuing the tapering of the steroids then start physical therapy and within a couple of months or so I would be back to normal. Well three days after the MRI I receive an email from my rheumatologist with the results stating I have bilateral Avascular necrosis of the femoral heads caused by a combination of lupus and long term steroid therapy and he is scheduling me with an orthopedic surgeon to have core decompression done. I had never heard of AVN, I had no clue what this meant. Immediately I started googling AVN and core decompression to try to figure out what was going on. When the results appeared my heart sank. The bones in my hips joints are over 30% dead! Blood flow has been cut off to the femoral head in both sides of my hips! The roller coaster began again! Still waiting for the muscle biopsy to be done, not knowing for sure what is depleting my muscles and now my bones are dying! Researching core decompression made things even scarier. They would have to go in and drill holes in the femoral head with the hopes this would start blood flow back and make new bone grow. The procedure didn't have many good reviews according to the internet. I was again overwhelmed with fear. This wasn't in the plans. I was supposed to taper the steroids, start physical therapy then be back on my feet!!! Now I am facing at least 2 other surgeries and would be totally non weight bearing for 4 to 6 weeks after each one. Total hip replacement was in my future according to everything I am reading! I am only 29 years old! I am too young to have to have joints totally replaced. I lost it emotionally again. My husband put his arms around me and said it's going to be ok. We will still overcome this, it's just going to be a longer, harder road than originally planned. I pulled myself together and mentally prepared myself. I was ready. The next week I had the muscle biopsy done and was told results could take 2 to 6 weeks. So now the waiting game! I had an appointment with the orthopedic surgeon for the following week. I just took things day by day and dealt with recovering from the muscle biopsy and tried not to focus on the whole picture at once. My first appointment with the orthopedic surgeon went fairly well. He said core decompression was our best option and I had a 70% chance of it being a success! This would postpone total hip replacement for hopefully 10 to 15 years! I had hope. He explained that the recovery of the core decompression was a little rough, but it would save my hips so I was willing to try. The right hip was scheduled for the core decompression the following week. Finally I received the call from my rheumatologist with the muscle biopsy results. I have type 2 muscle fiber atrophy. Long term steroid therapy is one of the top causes so that is what we put the blame on and once again was ready to continue tapering the steroids and then physical therapy and recovering from the core decompression I would eventually be back on my feet. It would take longer than originally planned but I didn't care. Whatever it takes I am willing to do! My rheumatologist also let me know he was scheduling me for a test with an endocrinologist to make sure my body was not steroid dependent due to the length of time I have been on long term steroid therapy,before he would take me totally off steroids. I was a little worried but just looked at it as another step to ensure we would not have any more surprises during this process. Core decompression on the right hip was done August 15. 4 to 6 weeks of non weight bearing then we would schedule for the left hip! Every was coming together and within 12 weeks I should be out of pain and back on my feet! My confidence was high and I was happy that even though the road is a little longer I was on my way to being back to normal! Then we get the results from the steroid dependency test and just as I feared, I am steroid dependent! I am adrenal insufficient on the dose I am currently taking. My adrenal glands are not functioning on their own! So here we go with another set back! The medications that were meant to help my lupus are now destroying my muscles and bones, yet I can't stop taking them without risking adrenal failure which ends in death! What option did this leave me except continuing on a low dose of steroids until I could get in with a specialist! An appointment with the endocrinologist was scheduled for the following week to see where we go from here! The endo ensures me that we will get my adrenal glands back functioning, it is just going to take a while (anywhere from 3 to 12 months) and lot of playing with the steroid dose which is not a fun process to go through! I am just happy to hear that I will eventually be able to get off the steroids. I just pray that no more damage is done to my body from the steroids while we are working through getting my adrenal glands back working. Mean while the pain in my hips is getting worse! Deep down I knew what this meant, the core decompression isn't working! I hoped and prayed I was wrong, but at my 5 week post op appointment with the orthopedic surgeon he confirmed my fear! The core decompression didn't work on the right side so it was no need in trying on the left. Total hip replacement was my only logical option left. He told me initially that if I continued on steroid therapy that my success rate would be lowered, so I guess I should have known it was going to go this way, But I had hoped that it would still work out! He did mention a medicine that we could try that would prolong hip replacement a little while, but it came with horrible side effects! This was not even an option as side effects from other medications is one of the reasons I am in the condition I am in now. So the roller coaster starts again! I am now scheduled for double total hip replacement on October 22, 2013. Hopefully this will finally be the start to the recovery of regaining use of my legs and getting my independence back! I Had an appointment with my rheumatologist this week and my blood work shows my lupus antibodies are on the rise again. Without high dose steroids my antibodies go crazy, but steroids are no longer an option in my medical care in my opinion! Taking a medication that I know is going to deteriorate my body is scarier than the unknown of my diseases! Once the endocrinologist gets me totally off the steroids this time I will have to be on my death bed before I agree to start steroid therapy again! Knowing my lupus is back active is scary, but I am ready to fight whatever comes next. Right now I am just looking forward to the hip replacements while being scared to death all at the same time. It's just a day to day outlook for now. With the love and support of my husband, son, family, and friends I know I will get through the next battle.
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Organizer

Jodi Coolman Trosclair 
Organizer
Marrero, LA
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