Today we meet Alison, who shares her story of living with Mixed Connective Tissue Disorder with us in her own words.
My name is Alison Gonzalez, I am a 33 year old medical biller, living in Saginaw, Michigan with my amazing husband. I’ve lived in a couple other cities over the years, but this is where my roots are and this is where our families are, so we too decided to call this home.
A long awaited diagnosis
It wasn’t too long ago that I was given my diagnosis. It felt like I had waited an eternity for it.
My symptoms had been present for many years, on and off, but in the lead up to my diagnosis they were occurring more often, and becoming more severe. I was having recurring Iritis (inflammation of the Iris), pain from my knees all the way up through my back and down to my hands, headaches, fatigue, and Raynaud’s. It was the Fall of 2017 when I finally got to a point where I knew something had to be going on and I made an appointment to see my primary care physician. At my visit with her, after hearing all of my symptoms, her initial concern was that it might be Lupus. She felt that I needed to see a Rheumatologist to have another evaluation and to have tests done- so she referred me to a doctor to oversee things from there.
At my first visit with the Rheumatologist, I did feel at ease and confident that I would get some answers as to why my body was falling apart on me. The doctor spent almost two hours with me going over my medical history and talking to me about my more recent symptoms. He then ordered X-rays and blood work to be done and wanted to follow up in a couple weeks to go over the results. I anxiously waited, and two weeks later with my husband by my side we went back to the office. And all the doctor could say was that based on my blood work, I may be in the “beginning” stages of Lupus or some connective tissue disease. He prescribed me Naproxen for my joint pain and wanted to follow up in a month.
A temporary fix
At the next appointment he thought everything looked fine, so the next visit would be scheduled for two months out. Then three months out. I always left those appointments feeling like progress was not being made. He would just tell me that I was “too young” to start a medication that I might have to be on long term or for the rest of my life. If Naproxen could manage my pain then that’s what he wanted to keep me on.
I eventually realized that pain medication was only a temporary fix. This doctor was not listening to me and I felt like he wasn’t taking me seriously. I had given this doctor six months of my time, he had not given me a diagnosis and just kept increasing my pain medication. So I began the search for a new doctor- and I knew that I wanted someone with experience with a wide range autoimmune diseases. It didn’t matter how far I’d have to travel to get to them.
Getting a diagnosis
My research led me to a doctor, and autoimmune clinic, about an hour away from where I live. I called right away about becoming a new patient- I just had to wait about a month for that first appointment. This time around I tried not to have high hopes. That appointment was much like the other. Except this doctor right away said that I probably did have some type of autoimmune disease, it was just a matter of seeing what the lab work would show. We’d meet again in two weeks.
I’ll always remember that July afternoon. It was bittersweet. The doctor came in the room and began to go over the lab results with us. He said his diagnosis was Mixed Connective Tissue Disease. Based on my blood work and symptoms, he said I had overlapping autoimmune diseases. He came up with a treatment plan for me to try to manage my symptoms. We would continue with monthly appointments until we agreed that the disease was more under control and we felt comfortable spacing out the visits.
Treatment
Over time, we did tweak my medication a little. I started out on Methotrexate pills and had to increase the dosage to see what worked best for me. I now take that medication by injection once a week. It’s only been six months since I was given my diagnosis, but I have felt a big improvement in my symptoms since starting my new medications.
My visits with my Doctor have now dropped to every three months. I’m also working with a neurologist to get my chronic headaches and migraines under control.
Love conquers all
I had mentioned that the day that I received my diagnosis was bittersweet. I had prayed and prayed prior to that appointment that I would be given some answers that day. Whether the results were good or bad, I just wanted some answers. Then once I had walked out of the office that day, it hit me. I have this autoimmune disease that I’ve never heard of before. How is it going to change my life?
My husband and I went to dinner after that appointment, then made the hour drive back home. We discussed the future. We talked about this disease and what it might do to me. Then we assured each other that together we would face this. On one of the scariest days of my life, I was blessed to have my husband there. He helped give me some peace of mind and comfort.
I am very fortunate to have an amazing support system. Besides my husband, my family, friends and coworkers have been so understanding and supportive. Even before I received my diagnosis, everyone was understanding if I couldn’t attend something due to my health or if I had to cancel last minute.
Learning the art of self care
This past year, I’ve really had to watch what I do and limit myself because I’ve learned the hard way what “over doing it” will do my body. Self-care has been one of the hardest things to learn in this process of adjusting to life with this disease.
I got to point where I realized that my body could not get better if I continued working forty hours a week. So I decided that a four day work week would be better for me right now. I needed to give myself an extra day of rest. So I asked my employer if I could go down to 35 hours and have a three day weekend and thankfully they allowed me to do so. It was not an easy decision to make, but I knew if it was going to help my health and well being, then that’s what mattered most. I’ve been on this new schedule for about four months now and I absolutely love it! It was one of the best decisions I’ve ever made.
Life is for living
I never thought I would live with an invisible illness. I had many plans for my husband and I to do before we started a family. Those plans did not involve countless doctor appointments, trips to the pharmacy to pick up medications, or dealing with the unpredictability of my body. If you were to look at me you would have no idea that I’m not well. I have lived with pain for so long that I have learned how to smile through it. It’s not until I’m in the comfort of my own home that I feel like I can be myself.
This illness has taught me many things. And though I felt like my body was falling apart, I was determined to not let this disease break me. I had spent many years designing and building my life, I did not want this to consume me and become my identity. Yes, it is now a huge part of my life, but I am so much more than my illness. I might have some limits, but my life is still just as full as it was before I got sick. Plans have changed a little bit, but that’s okay. We’ve just made new ones. I’m still living my life and doing what I can on my good days.
On my bad days, I pray for the strength to make it through. And I thank God for the blessings that I do have. I will not let this make me bitter. My life motto has always been that everything happens for a reason. I may never know exactly how or why I got this autoimmune disease. But since getting diagnosed, it has been so helpful finding others that are in similar situations or have similar conditions. And if sharing my story can be helpful in any way, then it’s worth telling.
Warrior wisdom
If you take away only one thing, let it be this, you are your own best advocate. If you feel like something isn’t right or isn’t working then speak up or move on. You have to do what’s best for you.
Thank you for letting me share my journey thus far with you. This is only the beginning. Like my disease, I know that this journey will be unpredictable, but I am ready for it. I can, and I will, make it through whatever comes along the way.
