My Experience With Getting An Autoimmune Disease Diagnosis
If you missed the first part of my story, be sure to read part 1 about the reasons that led to an autoimmune diagnosis.
Meeting the Rheumatologist for Autoimmune Diagnosis
I am fortunate to have good medical insurance (don’t get me started on my feelings on medical care in this country). We have a PPO so I don’t need referrals. That being said, even with my good insurance and no referral required, it took three months to get an appointment with a rheumatologist.
That’s three months of knowing something is wrong with me, but not knowing what is wrong. Three months of living with debilitating pain that I was only treating with ibuprofen. I was taking eight 200 mg pills at a time to be able to function as a parent and run my business. Even with a dangerously high dose of ibuprofen, I was in a lot of pain. I couldn’t easily carry my son. It was months since I had rocked him to sleep. I couldn’t take him to the pediatrician without my mom’s help since there wasn’t parking nearby and I’d have to either carry him a block or two or lift his stroller out of my car – neither an easy option.
The pain in my hips and back had gotten worse and I was so unbelievably exhausted. At the time, I thought the exhaustion was that of a new parent. I literally felt like I was living my life in quicksand that was pulling me down. The exhaustion from autoimmune disease is like nothing you will ever experience. I have been new mom tired. I have been tired from going out all night and going to work at 7 a.m. I have worked week-long tradeshows that kept me out most of the night and had me up for breakfast meetings at 6 a.m. Nothing compares to autoimmune tired. You literally wake up after sleeping for 10 hours feeling like you never slept.
When I met the rheumatologist, he had a diagnosis in mind. He had seen my records and my X-ray. Unfortunately, the X-ray was a bit blurry so he had me get my first of many MRIs to confirm his diagnosis. My rheumatologist was about my age and very kind.
He said he had a diagnosis in mind but didn’t want to share it yet because he didn’t want me to consult “Dr. Google” and read all of the worst case scenarios. He shared that the information you find online are from patients who are suffering the most, so it can be really scary for a new patient. I still appreciate that advice since I now read blogs and chat room conversations knowing that everyone has a different experience and that may not be my future.
Reaching An Autoimmune Diagnosis and Moving Forward With A Treatment Plan
My MRI confirmed what my rheumatologist suspected. My left sacroiliac joint (hip joint) had textbook inflammation. Coupled with my exhaustion and general back and hip pain, he could definitively diagnose me with Ankylosing Spondylitis, which most people have never heard of, myself included!
According to the Spondylitis Association of America, Ankylosing Spondylitis is a form of arthritis that primarily affects the spine, although other joints can be involved (I know my medication is failing when my hands and feet are also in pain). It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort.
Ankylosing Spondylitis is a systemic disease, which means it can affect other parts of the body, including: eyes, heart, lungs, gastrointestinal and neurological functioning.
Because it isn’t a common disease, there aren’t medications designed specifically for Ankylosing Spondylitis. Fortunately, many Rheumatoid Arthritis medications successfully treat Ankylosing Spondylitis. Unfortunately, Ankylosing Spondylitis patients have to wait for those medications to include our condition as an illness they treat before insurance companies will cover them.
Prior to my diagnosis, I hated taking medication. In fact, I still do. I can’t swallow pills so I have to chew my medication. Think about that – I was chewing 8 ibuprofen at a time to treat my pain. Thankfully I’ve been bumped up to 600 mg of ibuprofen so I now “only” chew two horse pills when I need it.
My rheumatologist decided to immediately start me on a TNF inhibitor, which is a biologic drug that stops inflammation by suppressing the immune system. The side effects of TNF inhibitors are scary – increased risk of infection, increased risk of certain cancers, possible neurological issues, etc., etc. etc. Nevertheless, I decided to take whatever drugs were available to make sure my illness didn’t impact my son’s life.
My cousin’s wife was diagnosed with Rheumatoid Arthritis after she had her son (autoimmune diseases frequently pop up after pregnancy and childbirth). She refused all medication and tried to treat her condition through diet and supplements. Ten years in, she had little use of her hands and had already had a hip and knee replacement. She also could no longer drive due to limited mobility in her neck. Of course, every case is different and every person tolerates illness and medication differently but I couldn’t bear the thought of not being an active participant in my son’s life.
Life With An Autoimmune Disease
My rheumatologist cautioned me that medication wouldn’t be a cure all. While many patients get relief from their medication, there are others who see no change in their condition. Also, one TNF inhibitor may work magic for one patient and may not work at all for another patient. Every body is different.
I decided to start with Enbrel since I had actually heard of it before (they do great marketing!) and it has been on the market for a long time. Fortunately, Enbrel has a patient assist program so I also was able to get assistance with my co-pay – a huge help! I had my first two doses in the rheumatologist’s office so that I could learn how and where to do my weekly injection.
Thankfully, aside from redness at the injection site, I didn’t have any side effects. Unfortunately, it took almost three months for the Enbrel to kick in. Even more unfortunately, even with medication, I have yet to have a completely symptom or pain free autoimmune day.
I no longer remember what it’s like to live without pain. On the positive side, medication makes it so that I can actively participate in my kids’ life. I can take my kids to the zoo. I can cook meals for them. I can do what most healthy moms do, although I usually do activities that most parents take for granted in a lot of pain.
Enbrel stopped working for me after about four years (which was a long run for me). After Enbrel, I tried Humira, but it did not work for me at all. In fact, I was in worse pain when I was on Humira. After Humira, I took a new IV injection medication. I had to go to the Oncology department to have an IV infusion every eight weeks. After a missed dose due to issues with my insurance company, my IV injection stopped working so I switched medication again. I am currently on Cymzia.
In the eight years since my diagnosis (I’m coming up on my anniversary), my life has changed completely. I used to be a type A person who could only relieve stress by running or taking a kick boxing class. Quite frankly, I haven’t found a good alternative, but I try much harder to live a lower stress life so it isn’t as necessary.
I’ve had to let go of my expectations of myself. I can’t work out hard like I used to so my body will be what it will be. However, I’m now happy with what my body can accomplish. I may be the worst person in the Pilates class, but I’m proud that my body was able to get through the class.
My house will never be clean to my standards. My husband does the majority of the housework since it is difficult for me. Since I’m not the one doing it, I have to let things go and just be thankful that I have a husband who does more than his 50%.
The one thing I don’t let my illness impact is my kids. I will push myself harder than I should to be the parent I want my kids to have. They get a lot more screen time than I’d like when I don’t feel well, but I chaperone field trips and take them on fun outings as often as I can, regardless of how I feel. I don’t know what the future holds for my health so I work really hard to make the memories now in case I am sidelined later.
I’ll never say that my autoimmune disease was a good thing because of x, y, z, but I also won’t let it change my outlook on life or dictate my life. For anyone starting this journey, there will be ups and downs. Medications stop working, we go through flares, we get frustrated about what we can no longer do. However, we are still here, living our lives, and that’s good enough for me. I get to raise two awesome boys who are caring and empathetic.