A little over four years, our family went to Mexico for my sister in law’s wedding. Being the picky person I am, I could not find anything I liked to eat, so for the week we were there, my meals consisted of mostly churros, yogurt, juice, and steak.
On the second or third day we were there, I woke up with horrible pain in my shoulder joint. I couldn’t describe it, I just knew it wasn’t bone or muscle pain, but it was deep “in there” I would say to Alex. At the time, Julie was just one year old and the pain was preventing me from being able to pick her up, so Alex was carrying her around all the time.
We came back home and the pain went away. A few months later, I got the pain again in the same place. It would come for one day and leave the next, so I didn’t pay much attention to it.
Eventually, my fingers started to hurt. I thought it was from typing on my phone. I stopped using my phone at night and in the mornings. However, the pain only started to get worse. One day, I woke up in a lot of pain. Alex was at work and I went to get Julie ready for the day, but the pain was so intense I couldn’t change her diaper or button her onesies. I called Alex terrified and started to cry uncontrollably. Alex went on Google, called me back and said “I think you have Rheumatoid Arthritis” put your hands in hot water for a while and see if you get a bit better. I did, for fifteen minutes. Although I could move my hands a bit better, I was still in a lot of pain.
I had no idea what Rheumatoid Arthritis was. I thought I would go to the doctor, get a prescription, and get better. I made an appointment. While I waited for the day to come, my pain was getting worse and worse. I could not sleep most nights. Eventually, I was exhausted from the combination of pain and lack of sleep. I would cry in my sleep from the pain. Alex would wake me up to give me a bunch of really strong Ibuprofen my dad had. This happened night after night until the appointment day came. On top of that, most of the joints in my body were hurting. Including my jaw, toes, knees, wrists, neck, fingers. It was bad!
I went to the Rheumatologist and she said, “It sounds like you have Rheumatoid Arthritis, but it could also be Lupus, Lyme disease, or another autoimmune disease, so we need to do a lot of tests and figure out exactly what it is.” I don’t remember the exact number of tubes of blood they took from me, but at the time I thought it was a crazy amount, 60-90 tubes or something like that. After that, the doctor said, “I will have the results in a few weeks. Make an appointment and come with someone who will be able to support you because a lot of people are in shock after diagnosis and they don’t listen to anything after knowing what they have. In my head I thought, “It can’t be that bad, it’s just arthritis” isn’t that what gives you a bit of pain on your knees?
Alex came with me to the appointment. I still had no idea what Rheumatoid Arthritis. I didn’t know much about it. The doctor said “You do indeed have Rheumatoid Arthritis. This is an autoimmune disease, which means your body thinks something is wrong with it and attacks itself. It is constantly fighting disease and destroying your joints and organs at the same time, hence the exhaustion and pain. You will always experience flu like symtoms, without having the flu. You will never have a day where you feel 100% okay again, and there is no cure” (that was like a stab right in the middle of my soul). Then she proceeded, “I will give you six vaccines today because the medicine I am going to give you, which is an injection you have to put on your leg every day, blocks your immune system from attacking you. Essentially, what that means is that your immune system will not work and having a cold for example will easily turn into pneumonia, any little bacteria can turn into a big infection. The other side effect of the medicine is the chance of getting skin cancer increases. You will have to come in for a biopsy once a year.” Alex and I were stunned. We just looked at her. I honestly don’t even know what I was thinking. I was just shocked.
She proceeded to tell us “the only other option you have is to get pregnant now. Like literally NOW” Alex and I looked at each other like is this lady real? Is this real? I was in the middle of my college career. My little one was 1 year old. We had one income. I can go on and on about the reasons why that was just a crazy idea for us. I also did not want to bring a baby into the world for a selfish reason. It just didn’t feel right. So Alex asked, “why get pregnant?” She said there was no explanation for it, but most people that suffer from autoimmune disease go on remission while pregnant and afterwards they can stay in remission for an undetermined amount of time.
Alex asked, “Is there anything we can do about food? or natural ways to fix this?”. Just thinking about this now makes me laugh. Try asking a doctor that! She looked at him like he was an alien and said, “you can try all you want, but it won’t work. It might work for a little bit, but she’ll be here a year later asking for something because it will just keep getting worse and worse. This is a progressive disease.”
I was just trying to process everything I was hearing, in shock. The doctor looked at me and said “so, what are you guys doing? are you getting pregnant or should I give you the vaccines today?” I just looked at her and Alex said “We’re going to think about it and come back”. So I got up and left. I could not stop crying. Even though Alex was being extremely sweet, I just didn’t want him to see me like that so I tried to go ahead alone, but he quickly caught up to me. We went into the car and I said. I will die by the time I’m 40 if I do this treatment; and I have no choice. I will not get pregnant. I am going to suffer for the little bit of life I have left. Vaccines, sickness, pain, biopsies, injections, never feel 100% again. How could this happen? I was just devastated.
Alex looked at me and said “None of that is going to happen. We found a way to always make things work for us and we are going to do it again. Doctors don’t know everything. We are going to find a way to beat this.”
At that moment I thought, he might be right. A few years ago, I had read a book about Diabetes for my mom and we were able to reduce her medicine dosage by two thirds, just from diet. I could probably do it with my disease too. I knew from reading that book that Diabetes was an autoimmune disease just like the one I had.
Alex took me to a smoothie place after the doctor and after my cry. We sat there and talked about positive things. Sipped on a smoothie and cheered to health. He said we will do everything in our power to get better without the horrible treatment. We would find a way.
The next day, Alex went to work and I sat in front of the computer and started researching. I looked for the doctor that had written the book. I had forgotten his name,Dr. Mark Hyman and the book was The Blood Sugar Solution, which I could not recommend enough.
I Googled him and found out he was a functional medicine doctor. His office was in Ohio. I called Alex and was like “we gotta go to Ohio this weekend” He said okay, but then he looked for functional medicine in New Jersey and found out there was a doctor here. We immediately made an appointment. Soon after, I went in for my first appointment.
They asked me many questions and ran a lot of blood tests, allergies, stool (Sorry for the TMI) and found out that I had an insane amount of allregies. I was constantly being exposed to things I was allergic to. I also have a gene that prevents my cells from metabolizing like normal people, so it takes longer for my cells to metabolize than the average person, and I had a ton of vitamin deficiencies. My body was also attacking my thyroid. After looking at my blood test results, the doctor told me my Rheumatoid Factor was 43 and should’ve been less than 9, on top of that, my Cyclic Citrullinated Peptide (CCP) Ig was off the charts at greater than 250 and in order to test negative, this number needs to be below 20! On top of that my thyroid antibodies were extremely high as well, since my body was also attacking my thyroid.
The doctor put me on a strict diet and a lot of supplements. Within the first three days of eating the foods that were recommended to me. My pain had decreased by 80%. Within a week 90%. I kept thinking yes! Soon, I will make the doctor wrong and I will feel 100% again. Sure enough, I did. For 3 years after that, I went on remission and continued my diet. During the last year of remmission, I started eating things here and there that were not part of my diet and I was feeling no symptoms from it.
Last year around May, I started to look for a new job and in June, my dad was hospitalized. I was really stressed and I had a flare up. I realized during all this time, I had learned a lot about nutrition, gut health, and allergies, but I had not learned anything about managing stress, which plays one of the biggest roles in autoimmune disease. I started to learn more about the mind and how past trauma can cause autoimmune disease.
This past year has been the most difficult year of my entire life. I had to learn the hard way that taking care of my body means taking care of my whole body, including my mind and my spirit. It’s a lot easier to go on a strict diet than to cure your soul, but without doing both I realized I will never get 100% better.
This year has been all about healing old wounds, being okay with not being okay, accepting everything without expecting anything, having no choice but to learn how to ask for help, learning to let it all out, letting go, rewiring my brain.
Pain has a weird way of driving you insane. It clouds your thoughts. It makes you stronger, then weaker, then stronger again. It turns you into a completely different person.
I just want to share this. I want to reach those people that are suffering like I have been this past year. I want to tell you that I promise it will be okay. That I get you. I acknowledge the pain you feel and I just want to be there for you. Most importantly, we can fix this!
It’s a weird thing to say, but I’ve never been healthier than after being diagnosed with an autoimmune disease. I never knew how unloved my body was. I never knew how malnourished it was. My autoimmune disease taught me to love myself, to take care of my body, to rest, and to never, ever, take my health for granted ever again.