Farmer Nora's Journey - May 20, 2013
Wow! Hi Everyone. Thanks for checking out Gina’s blog and being interested in what I have to say! I have spent the last year and a half learning about REAL FOOD from Gina at Simplistic Wholistic and this experience has absolutely changed my life for the better. Before I met Gina I was getting by, suffering, and unhealthy. Gina has helped me realized that everything you put in or on your body had tremendous implications to your health. I am so thankful to Gina for all her guidance and support through my healing journey! I want to share my story with all of you. I once thought I couldn’t be helped and I want all of you to know that YOU can do something about chronic diseases!
My journey started in the fall of 2005 when I was a freshman at college. Two months into college I started having joint pain, but I had no idea why. I was a very healthy kid growing up and I rarely got a cold so having any pain was unusual. At first the pain was just in my thumb joints and the balls of my feet. I started to having trouble walking and doing things with my hands. I worked through the pain and kept going, figuring it would go away eventually. As the end of the semester approached, and then through the holiday break, my pain got worse and it spread to many more joints. Since I grew up on a farm everyone thought I had Lyme’s Disease. When I went home for winter break I had a bunch of blood work done.
By the time I went back to school in January every joint in my body hurt. My knees were so swollen I had to take the stairs one step at a time, my feet, ankles, fingers, wrists, neck, knees, shoulders, and jaw were all constantly throbbing. The results for Lyme’s Disease came back negative and after more blood work I was finally diagnosed in March with Rheumatoid Arthritis (RA).
I was told that RA was a lifelong chronic disease that generally affected middle aged women, but men and younger women were susceptible too. I was told there is no cure for RA and all I can hope to do is manage the disease and the pain. The doctor drained my larger knee and injected a steroid, and sent me home with a prescription for prednisone and the least detrimental, first DMARDs (disease modifying anti-rheumatic drugs). He also told me if the pain didn’t stop I could take a couple of Aleve or other NSAID (non-steroidal anti-inflammatory drug) every few hours.
I was happy to have a diagnosis, but crushed to have such a dismal prognosis. I had always been active; I grew up running around on a farm, I played sports throughout middle and high school, and I rode horses just about every day. I even attended college specifically to ride and learn about horses. How was I going to complete my dreams, how was I even going to walk out of that office and get back to school?
The pain was so bad I couldn’t move, everything hurt and was difficult. Every movement I had taken for granted before, I will never take for granted again: opening a door, brushing teeth, forget putting your hair in a ponytail, tying shoes, getting dressed, holding a pen, typing on the computer, starting a car or shifting, all of these tasks took a long painful time, or I had to have someone do them for me. I hardly ever cried before, but I turned to crying all the time. I cried because it hurt and I cried because I didn’t know when or if ever I was going to not hurt. I cried just thinking about what I had to do to get up and get going each day.
This stuck around for months, the first two medicines I had to try for at least 6 weeks each and they didn’t help. I loaded up on prednisone and NSAIDS to get through. Finally I started Methotrexate. Methotrexate for those of you, who don’t have the misfortune of knowing personally, is a drug used to suppress the immune system and is used to treat autoimmune diseases and cancer, as a chemotherapy drug. So I started it at this point and every 6 weeks I bumped up my dose until I got to 8 pills each week and my pain had gone down to a manageable setting. I was back at school for my sophomore year and I was finally starting to cope with not being able to do everything I wanted, although to this day I still struggle with that idea. I told a couple of friends and teachers that I couldn’t push myself the way I wanted and that I might not be up for certain activities. I slept a lot, did what I needed to do to get through each week of school and riding classes, and I kept plugging along. This pattern kept up for my whole sophomore year, during which I increased my Methotrexate to the maximum oral dosage of 10 pills per week. I was also taking folic acid to combat the negative effects of the Methotrexate. Also, because Methotrexate acts like a chemotherapy, as a result I often had bouts of nausea, frequent colds, any cuts or bruises would take weeks to heal, and my thick curly hair thinned, but none of that mattered at the time because I wasn’t in constant throbbing pain 24/7.
As the days dragged on I had decent days and I learned to get along. Both the summers after my freshman and sophomore years I came home to work on the family farm. While I enjoyed the family farm I had had plans to work elsewhere in the equine industry honing my skills and adding to my experiences, but I was too scared to be on my own and not be able to complete a day’s work. At home everyone understood when I said I couldn’t work today. During my junior year-first semester I was feeling better, but still not great. I was riding again and starting to have more energy, but I wasn’t excited about my major/program anymore. I realized that I wouldn’t be able to work with horses and ride as a career anymore - there were too many “if’s” about my health. I started to think about transferring and in the spring of 2008 I started at the University of Delaware.
Around that time I had added another drug to the mix, Leflunomide aka Arava. I was told that this was the strongest dosage and combination of drugs that I could take orally to control my RA. If I still had pain I would need to start thinking about inject-able biologics. Biologics are expense, inconvenient, and an aggressive way to treat RA and suppress the immune system; I wasn’t excited. The good news was that I was starting over at a new school with my disease under control with the drugs, and I was starting to enjoy life again. I made new friends, learned new skills and looked forward to coming back to the farm and finding my place. I graduated in the spring of 2009 in 4 years! I moved back to the family farm. I was determined to support myself and live on my own; being so dependent for so long will do that to you! I moved into a house on the farm by myself and took over the produce operation.
2009 was a great year; I worked hard and suffered little. I took my medication religiously and it seemed to be paying off. When I over worked I would just take some Aleve to mask the pain. As far as I had been told this was all I could hope for and it would be how my whole life would be, ups and downs, lots and lots of pills, and the possibility of stronger meds down the road.
In the spring of 2010, I had my first major flare up in almost 2 years. One of the most painful joints for me is my left shoulder. My shoulders had acted up in the beginning, but it hadn’t hurt like this in almost 3 years. The flare was unbearable! Any direction and any limb that I moved seemed to tug on my shoulder joint. Moving from sitting to standing or lying to sitting shot bolts of pain from my left shoulder. I was miserable and I couldn’t do anything! This was a true reminder that I was not truly as healthy as I had felt in the months before.
I went back to my doctor and he couldn’t do anything but suggest it was time to step up the medication. I decided to start with the self-injection Humira, which needed to be administered every 2 weeks. After weeks of fighting with the insurance company, since Humira and others are prohibitively expensive, I received my first dose in the mail. I was excited for the prospect of no pain again and terrified at the same time. Since the self-injection pen injections the thick liquid pretty fast, it can hurt, so I was advised to ice down my thigh to numb the pain. First shot down, it hurt, but I handled it. The only problem is it takes months for the drug to build up in your system, so I had many more injections to go before we could see if it was working or not.
As the weeks dragged on the shots started taking a toll on me. Days before the injection was needed I would get anxious about the pain that was coming. When the day came I would sit with the injector-pen in my hand on the couch and try to build up the courage to stick myself. This clearly is not a way to live. After three months I still had more pain all over then I was comfortable with and I went back to my doctor. I told him about my dread of the self-injection and we decided to try a once a month nurse administered injection called Cimzia. After more figuring out of my insurance I went for my first shot. It hurt, but it was nice to have someone else administering the shot and since it was a regular syringe the nurse pushed the drug in slowly, she also distracted me by making conversation. Again I had to have many shots over many months before we knew whether it would work for me.
As I became a regular for the nurse she asked why I was coming for the shots because she assumed I had Crohn’s disease. At first I was confused as to why RA and Crohn’s would have the same treatment, but as I learned more about autoimmune diseases I learned that there is no cure for any autoimmune diseases and no one knows the cause. If no one knows what causes or cures RA, I felt like my outlook on life was depressing. I was starting to realize that my life span would probably be shortened by the drugs I was taking. I researched and realized that the side effects of the medications I was on were doing terrible things to my body and my immune system. I was most likely to die from an infection or pneumonia in my later year. I also realized that having a child would be difficult. RA symptoms generally lessen during pregnancy, but flare once the child is born. I would also have to be off drugs for at least a year or more before I could conceive, what am I supposed to do for pain during that year?? There was no light at the end of the tunnel, my life was going to get harder as I got older and there was nothing I could do about it.
After Cimzia didn’t give me any relief the next drug was Rutuxan, an infusion you can only get by failing to respond to other medications. I didn’t know what else to do and I was desperate for pain relief. My first Rutuxan infusion was in March 2011 and it lasted 8 hours. I sat in a lazy boy chair with an IV in my hand pumping me full of poison for 8 hours! My body had an allergic reaction to the drug after a couple of hours so the nurse had to give me some Benadryl and slow the flow into the IV. When I left I was nauseous and exhausted. Two weeks later I had another infusion and then I had to wait 6 months before I received another set of infusions, which were 2 weeks apart. Again, it would take a few doses to see if it was working for me…what was I supposed to do in the meantime? During this time my feet, knees, and hands hurt the most. Every morning I would wrap my wrists in order to decrease the pain and help me get through my work. I was tired, cranky, and frustrated.
This is when I met Gina and she helped me realize there was more out there! As I was starting to worry about my future I figured I should look into eating “healthy” as to help my body the best I could. Gina had recently started shopping at our farm stand and she asked us to put out some of her brochures. I took a look and was pleased to find she promoted “REAL foods” from all food groups. I figured I would see what else she had to say and if she could help me. I set up a consultation and told her my situation. Gina was great over the next few weeks; she listened well and gave me information to mull over, but didn’t force anything on me. A few sessions in she suggested that I try removing gluten (a protein in wheat, barley and rye) from my food intake. I laughed on the inside and thought ‘no way”, I’d add extra kale and try quinoa before I’d give up the sandwiches and crackers that I know! I just wanted to get a little “healthier” and I never thought I could change or eliminate my pain with food!
A couple of weeks later Gina’s suggestions were still bouncing around in my head, but I still wasn’t very interested in giving up gluten and everything that had it as an ingredient. One day I was making homemade bread with wheat flour and snacking on it all day along with crackers and chips (both which contained gluten grains), the next day I felt terrible, foggy, and tired. I decided to try eliminating gluten from my diet and the next day I WAS PAIN FREE! That was it; I was sold on how much food can affect the body! Not eating gluten made my joints stop hurting, that idea was crazy to me, but I loved it! The same day I went gluten-free I also decided to stop all my pain medications cold turkey. I also called my doctor and postponed my next Rutuxan infusion, which was scheduled for the next week, indefinitely. For the next two months if I accidentally ingested gluten I would have a little pain, but for the most part I was a brand new, pain free person! I cleaned out my whole kitchen and trashed anything with gluten.
Unfortunately, after a couple months the pain started coming back…I was not happy. I went back to Gina and she suggested that I eliminate dairy (especially since I had always consumed pasteurized dairy), since gluten and pasteurized dairy are among the main irritants to the gut. She helped me understand that my gut was related to my chronic pain. I was leaning how much food could affect my body, but I was also frustrated that gluten free wasn’t still keeping the pain away. I was weary of cutting out another food group just for some temporary relief. I wasn’t looking forward to living without dairy AND gluten, and possibly still with some pain. However, I was also so happy to be off any medications that I gave dairy free a halfhearted try, and then went back to Gina for more advice.
She patiently listened to my reservations and sent me home with a book on the Specific Carbohydrate Diet (SCD). It was easy to read and made a lot of sense. The SCD diet has helped many people with autoimmune, bowel, autism, and other diseases get their health back. A week later I was ready to start! I talked to Gina and she gave me another book and suggested for me, if I was going to commit I should start the GAPS diet and start with the intro.
The GAPS diet is based off of the SCD diet, but it includes a very specific and comprehensive re-introduction of foods. The general idea is to cut out all grains, starches, and sugars in order to heal the gut because those components can further irritate a damaged gut. At the same time, numerous healing foods are stressed and are the new focus. Once the gut is healed in 1-2 years, those on GAPS can add some grains, starches, and natural sugars back in moderation. The diet also encourages you to remove dairy from your diet for a few weeks (Gina generally recommends a 6 week elimination), and to only add it back in approved forms with a slow introduction - ghee, raw butter, homemade 24-hr yogurt then homemade kefir.
I was so ready to get healthy I started GAPS immediately, April 21, 2012. I focused on eating only homemade bone broths, free range eggs, pastured raised meats, and well cooked vegetables. Let me tell you GAPS isn’t for the faint of heart, it is hard! But it is sooooooooo worth it! I got worse before I got better though. I had major die off reactions from bad bacteria leaving my body. My joint pain got worse (and it’s not advised to take any NSAIDS on GAPS), I had very little energy, and I was cranky a lot. I also lost a good bit of weight, which was a little scary at the beginning, but I soon learned it was just my body’s way of getting rid of toxins and my body was slowly healing. I took a lot of Epsom salt detoxifying baths and I listened to my body as I progressed through the stages of the intro diet.
Little by little I added more foods and started to feel better. There is no point during my journey where I will say that on that day or in that month I “got better”; I just know that I am so much better than I was this time last year! And I have to thank Gina for being there for me every step of the way! Since Gina has also been on the GAPS diet she understood where I was emotionally coming from every time I would email or call and tell her I was tired of cooking and tired of eating this way and not feeling better immediately. Gina had been there too and even though she couldn’t tell me exactly when I would feel better or how my body would react to different foods, she helped me get through the hardest months and she kept reminding me that I was off all of my medications and how excited I should be about that step!
My pain is not gone, but my pain is very little compared to what it used to be and it is not constant! I still have around another year on GAPS to continue healing my body and I am excited about what that can mean for me. I have energy now and I am at a healthy weight; I am back to carrying feed buckets and working in the garden all day! I am completely amazing, humbled, and excited about my journey. Before I learned about the importance of food I had no idea, and I was never told changing my diet could help me. Doctors would ask me if I noticed whether certain foods made me feel worse. However, I had no idea what different ingredients and food components I was taking in while eating packaged foods (even those that I once considered healthy packaged foods like granola bars and crackers). So, I said to myself, “No, how could food in my gut and digestive system affect pain in my joints anyways?” I am so thankful to Gina for encouraging me to learn, to redefine what “healthy food” really means (because it surely goes far beyond vegetables) and change my diet and food lifestyle. I am thankful my body was able to heal and that I gave my body the right tools to do so. Also, I am so thankful that as hard as the diet was to implement, it is in fact, delicious, nutritious food and I am reclaiming my health.
This is the most incredible experience ever and I hope you all will realize you can make a difference to your health and life. You can improve chronic diseases in a good way by recovering and taking back your health! Please feel free to ask me any questions here or private message me at nora27crist@gmail.com. I know what it feels like to be lost, in constant pain and frustrated, but I hope that you realize you CAN do something about it!