My experience with being sick goes back a very long time. I remember first getting sick at Thanksgiving when I was 13. It started in my lungs. I remember not being able to breathe during the family dinner, and then my parents rushing me to the emergency room. I was told I had bronchitis, and was sent home with some steroids and antibiotics.
By Christmas I had gotten much worse, and this time they diagnosed me with asthma. I don't remember clearly a lot of what was going on back then, I just remember getting sicker and sicker, constantly in the hospital and on having more tests and more medications. I remember as a child spending many holidays in the hospital. As much as a medical staff can do in such a situation they do try to make it fun for kids while there. And yes, the Easter Bunny and Santa Claus do know where you are , even if you are in the hospital. :)
As I got older I continued to get worse , but no one really knew why. There were lots of theories from the doctors. Ranging from; I was so sick because I was a vegetarian, to even the fact that I was born premature. At 16 it was determined by my doctors I would never get pregnant because I was so sick and not menstruating. Yet, the doctors still had no clue what was going on. However, they did diagnose me with mononucleosis and chronic fatigue syndrome.
At 17 I moved just 10 hours north of my family with my husband, Todd, to go to college. My lungs decided they didn't like that move too much. I spent most of my time in a hospital in northern California due to a recurring collapsed lung. I could not seem to get better , so after almost a year of struggling , I came back home to my parents house.
At 18, despite what the medical professionals had said, I did become pregnant. I had no clue that I was pregnant because I never got my period and my tummy was always distended. I was always throwing up anyway for no reason. So when my body was doing this from the pregnancy I honestly just thought it was normal. My doctors could never figure out why my body did this. I was 5 months pregnant before I had realized it. My beautiful daughter Harmony was born 6 weeks early. Healthy and the most beautiful thing you have ever seen. I had to stay in the hospital for a week because I was so sick. I held Harmony the entire time. The nurses would come in and tell me that I needed rest , but I knew I just needed to hold my baby. She would help me heal.
At age 25 I got pregnant again. This really took a toll on my body. I was so sick the entire pregnancy, in and out of the hospital; and when I wasn't in the hospital I was put on bed rest. Although, against doctor's orders, I worked as much as I could. Our daughter Rheannon was born 4 weeks early, but she is very healthy and so beautiful. I couldn't stop looking at her. However, since then, we have found out Rheannon does not hear out of one ear. I guess no one can be perfect, so other then that she's very healthy.
After Rheannon's birth my health declined fast . My lungs were horrible and the docs said I would not make it to see my 28th birthday. I made it to 28 but my tummy problems were getting so much worse. The pain was excruciating. I would be doubled over in pain just trying to make it through the night. I could not stop throwing up but my tummy was so distended. I thought my appendix must have ruptured. The pain was just so bad. I hated hospitals and didn't want to go back. So I did what any normal / crazy person would do , I went to the chiropractor. Thankfully he was more medically astute than I was. He took one look at me and sent me straight to the emergency room. By the look of my tummy he thought my appendix must have burst as well.
Todd took me straight to the ER and they did all the normal tests. Ct scan , MRI , X ray and blood work. My tummy was so inflamed they couldn't see anything but just guessed by the looks of my tummy , that my appendix must have burst. As they were prepping me for emergency surgery, my parents show up. I remember being wheeled down the hallway laying on the gerny. The surgeon introduced himself to my parents, and for some reason my mom said that she has crohn's disease. Crohn's is an autoimmune disease that attacks anywhere along the digestive system. My body is fighting itself . It thinks I am the enemy, therefore attacking my own body. They stopped the surgery right there and said, "oh my god I bet that is what this is". I was way to sick for them to do the testing to see if the crohns was acting up at that moment. So after being back on the steroids for a month , the inflammation had settled down enough for my first colonoscopy. I now get them every 6 months.
They took biopsies and it came back that I did in fact have crohn's disease . The next 2 years were filled with more medical appointments, more hospital visits ,and more steroids, but not really ever feeling better. They said the disease was progressing very fast and that I would not make it until I was 30. I guess I took that as a personal challenge and I poured everything into getting healthy. I found two amazing personal trainers that helped me train as an Olympic weight lifter. ( A style of weight lifting, not that I went to the Olympics ) my trainers were amazing and taught me how to eat a paleo diet.
I had very good health for long time. I still had the things I always have to deal with; like not being able to breathe well , extreme pain every day, vomiting for no reason , distended belly , constant diarrhea, up to 30 times a day , no energy, but I was able to train in the morning, work all day and train again at night , all while still taking care of my family.
At 34 I got pregnant again with our son, Kaiden . I had the best pregnancy. I think the crohn's went completely into remission. I thought to myself, this is what it feels like to be normal. I was able to work all the way up until I had Kaiden . He was 2 weeks late and a full 10 lbs. A Big boy for my small frame. He was so amazing. I never stopped wanting to be right next to him.
The day after I had him , the crohn's came back with a vengeance.
The insane pain never stopped. I never stopped being in the bathroom. It was horrible trying to take care of my little guy when I could not take care of myself. I had my first surgery when Kaiden was 2 and a half. I had 3 horrible hernias that were wrapping around my intestines. I could not hold my baby because of the surgery.
Nothing was helping and the docs were giving me so much medicine. I had a standing prescription order for morphine, because the pain had become unbearable. My doctor had no clue what to do with me so he sent me down to UCSD. It's a teaching hospital, with some of the best physicians studying cases like mine. They only take patients that are very sick and not responding to any other treatment. I got right in to see doctor Sandborn. He heads up all the clinical trials. He discovered some of the medicines that have worked on people that don't respond to anything else. You could imagine my excitement to be able to see him and his team. They ran a lot of tests and put me on new medication, oh yeah, and more steroids. Lol . Always more steroids . I had been on and off them since I was 13. It's the only thing that ever seemed to help. I would later come to find out why they are called the Devil's tic tacs.
During this time , I needed a hysterectomy. The steroids had weakened my connective tissue and my uterus has prolapsed. As the doc was examining me , he said we will need to do some more tests before the hysterectomy.
More tests turned into about 2 months of constant testing . I wasn't sure what he was testing me for , but I will tell you it was not fun. One of the test was a bladder biopsies. The results of the biopsies finally found something. I was informed that I had true interstitial cystitis. I had no clue what that meant. He explained it was yet another autoimmune disease. My body was now attacking my bladder. After I recovered from the hysterectomy, we started on bladder instillation three times a week. It was a solution that is instilled into the bladder combined with four different meds. A pain medication, an antibiotic, a medicine called Elmiron, and you guessed it more steroids.
As all of this was going on , I went almost completely blind. This was from all the wonderful steroids I had been on. I needed three eye surgeries to fix this. Out of all the things I have dealt with this may have been the scariest. You don't realize how much we take our sight for granted until it's gone. I honestly picked up the wrong child from school once. They all wore uniforms and all I could see was the outline shapes of the kids. I went to grab what I thought was my son's hand and started walking towards the door. The child came with me without a problem, it was the teacher who stopped me and said , " that's not your child ". I was so embarrassed. Lol
When you have eye surgery it is not painful, but they keep you awake during the procedure, and that is just not fun. The first two eye surgeries didn't work and most surgeons would not have attempted the third, but again, me being at the teaching hospital I have access to things other hospital won't offer. Thank god the third surgery was successful and now I can see again. I'm so grateful for that.
During all of this I had been getting many different infusions as well as iv's and blood draws. I was so sick they could never find a viable vein. They would have to poke me so many times and all my veins would collapse. I would come out of my appointments looking like a heroine addict. So many horrible bruises. I hated the way it looked. The nurses in the infusion center suggested that I get a port. A port is a device they implant in your chest with a small cut in your neck and a larger one on your chest. Again you are awake for this surgery. You don't feel anything but pressure at the time, but scary to know someone is cutting into your neck. The device goes directly into your heart , it is supposed to give easy access for infusions and blood draws. After a lot of research, I decided to get a port. I was really hoping it would ease some of the stuff I had to deal with. Boy was I wrong. Although the percentage of things going wrong with a port are slim , my body was one of the ones who had many problems with it. I don't know how many times I have heard a doc say, "That almost never happens." Well if it almost never happens most likely it will happen to me. Lol.
About three days after having surgery to get the port , I got very sick. I developed a 104 degree fever and didn't have enough energy to get out of bed. Todd took me to the ER and they diagnosed me with staph and sepsis. I was so sick and they said it was the port. So back into emergency surgery to have the port taken out. I was sad that I went through all of that and I didn't even get a chance to use it.
I always walk a lot while I'm stuck in the hospital. I absolutely hate being stuck in bed and locked up in a room while I'm there , so I walk laps around the halls . One day while doing my laps three nurses were running towards me. They were dressed in masks and gowns , and gloved up. They seemed very panicked. I assumed they were running to help some other patient. Definitely didn't think they were coming for me. Boy I was wrong. Lol
There was one doctor in particular that I remember. He would come into my room and read my tests results from the day before and just cry. He would say how sad it was to see a person like me having such a hard time. He never said it , but I don't think he thought I was going to make it out of that room . In true Melissa fashion I fought my butt off to get better. I kept moving and I got better but needed 8 weeks of IV antibiotics. I could not go home unless I agreed to another type of port placed in my arm called a Picc line. The procedure was similar to what I had just gone through with the port . The port that almost killed me, but in order to go home and be with my family, who I missed so much , I had to do it. I was scared, but agreed. They put the needle in your arm and thread it through to the heart . You are awake, with no sedation or pain meds. It wasn't horrible but also not fun. I got to go home the next day. I had nurses come to the house every day for 8 weeks to help do everything they would in the hospital. I had to pump the IV drugs into my picc line every six hours around the clock. So even at night I had to wake up and do the whole process of sterilizing everything, then pumping the meds in and then cleaning up again.
Somewhere in all of this I had to have my gallbladder taken out. It is common for people with crohn's to have a gallbladder full of stones because we don't assimilate our food well. The docs said it was terrible, full of stones , and he said now my pain would be better after surgery. I didn't get better. The pain was still so bad that my docs decided it was time to cut out the most diseased part of my small intestine. I didn't really want to do this , but I was told it was better to do it now then under an emergency situation. This surgery is called a resection . Bags packed up again and surgery set. Right on our wedding anniversary. I figured that was good luck. They took as little of my small intestine as they could , but it was still a lot in my opinion. Lol. three feet. They also found a huge mass that they removed. I think this was the most painful surgery I have been through. Recovery was very slow. I had to find strength deep down inside that I didn't even know I had. At one point when I felt I could no longer go on , I heard a voice from deep down inside that said in a very stern male voice to ," toughen up soldier, you will make it out of this ". I was very surprised to hear this voice . I'm still not sure who's it was, but it worked. At that moment I got tough and told myself I would make it out of here.
The doctors decided to put me on a drug called methotrexate. It is a form of chemotherapy that I inject every week. By I , I mean todd injects it into me. I'm so grateful for him being able to handle giving me injections because honestly I could not do them myself. Many of the medicines I am on require them to be injected. Todd has never has a problem doing this for me.
To this day I am still receiving treatment. I recently had the second scopes since the resection surgery. Even Though I am on all of these meds , it still shows the crohn's is getting worse. Despite a lifetime of bad news, this time it was still devastating. I feel like I have done everything the best doctors out there have told me to do and yet I get worse. The pain is unbearable on most days but I pretend it's not there. I pretend I'm ok and I keep pushing forward. This is hard for me to do, but I do it for my family. I want to be here with them so badly. I want to participate in everything they do. I hate it when I'm away from them because I'm stuck in the hospital. I hate that I have not been able to pick my son up since he was 2 and a half because of all the surgeries. I feel like I am letting everyone down when I have to cancel plans because I just can't get out of bed. I hate that my family has had to put off so many family vacations because I can not go and they don't want to go without me .
Before getting this sick I was the best holistic health practitioner in southern California . I loved my work . It was my passion and I never felt like I was actually "working". I was able to help so many people heal themselves holistically. There had been articles written in our little newspaper saying, "before going to see a doc, go see Melissa, she will help you". Doctors were referring their patients to me, instead of surgery. I was so blessed to help so many people. I knew that I could help myself holistically. When I was first getting sick I did so much research on holistic ways to help myself. Looking up diets , herbs, tinctures. I spent days in the kitchen, preparing bone broth, pureed veggies , boiled chicken. All while preparing other food for the family to eat. I made special diets do help , but it was never enough. I continue as much holistic work as I can.
I see an acupuncturist, do yoga daily, exercise daily, see a chiropractor, go to meditation classes , get massages. It all helps but again doesn't seem to last. I thought by blending eastern medicine and western medicine I could make a difference. Yet I seem to continue to get worse.
It was absolutely devastating to me when I was told I was no longer able to work. Work was not only where I made very good money but it is where I thought I fulfilled my purpose of being. I absolutely loved what I did . I loved that I was my own boss , that I could set my own hours so I could still be there for my family while still being able to help others. I loved how I could bring home great money and be what I thought was a great partner in marriage because I could contribute financially to our family. It made me feel good to be able to do everything I had thought was important. It seemed like my whole life came crashing down when I was told I could no longer work. Todd asked me to file for disability to help out with the bills. I didn't want to do this. I think mostly because I never thought of myself as disabled. I mean if you look at me, I look perfectly healthy . I also always believed I would get better and go back to work. I did apply appease my husband and eventually applied for benefits. I was approved pretty quickly compared to all of the stories you here. I got awarded 100% disability. The wording in the award letter made me want to cry. They called me fatal. I don't think I'm fatel. I have overcome the doctor's telling me I've been dying for years. Aren't we all dying? I won't spend my time here feeling sorry for myself. I will continue to fight every day to live my life to the fullest. I hope I show my kids that no matter what you go through in life, you are strong and you can overcome anything.
Despite everything I have gone through I have learn so many lessons that I am so grateful for.
I have learned to slow down and take everything day by day. Or sometimes minute by minute.
I have learned I am way stronger then I thought I was.
I have learned to be grateful for everything especially the little things in life.
I have learned that having a job doesn't make you who you are.
I have seen the kindness and compassion in many people.
I have learned life is not as you expect it to be and every moment is priceless.
I have learned what unconditional love truly means.
I have met many lifelong friends because of this disease.
I have seen amazing miracles with people healing themselves .
I have learned I am much more then this disease, then my job , then a wife or a mother.
I have learned to not stress about the little things.
To not stress about money because that always seems to work itself out .
I have learned that doctors although try their hardest my not always have all the answers or even if they do their hands might be tied in being able to give you the treatment you need.
I have learned compassion.
I am continuing to learn to be kind and loving to myself, to treat myself as I treat others. To see myself as whole. To know that just being myself shines my light so bright that it is contagious to others. I don't need to be a holistic health practitioner to help people. That just by showing up and being me , that that is enough to help others. My purpose doesn't change because I am sick. I still can continue to help others just by being me.
I am so grateful for the lessons I have been shown by having these challenges.
I am so grateful for my friends and family that put up with me having to cancel on outings because I just can't move. They always still invite me and when I do show up everyone is so accommodating to have safe food for me or activities planned out near a restroom.
I am so grateful to my children who are honestly the ones I keep fighting for . They are always by my side when I need them. They always put a smile on my face and keep me motivated to find strength to keep going.
I'm so grateful for my husband Todd; who has put up with so much; who will do all the things I think are so gross without complaining, like changing my bandages after surgery or cleaning up after my vomiting, or letting me sleep for 17 hours because I need it. He will take the kids out to dinner so I don't have to smell food on days I can't eat. He has never complained about me not doing what I think I am supposed to do as a wife and mother.
The most important thing I have learned is that it's what we think about that defines who we are; those individual thoughts that uniquely make up, us. Our jobs , or cars or , houses , or money isn't really important. And it's not how others see us . We put so much pressure on ourselves to live up to this idea of who we are supposed to be. Really all that matters is that we are our authentic selves. We show up , listen, tell the truth and do our best to participate. Nothing else really matters and everything will fall into place just the way it is supposed to.
I'm not sure where I go from here, but, I know whatever it is, I will be grateful to be still be fighting until the end .