Life is a Marathon - Not a Race

I was diagnosed with Rheumatoid Arthritis almost 10 years ago. Coming out of what I call the “Diagnosis Gate” I felt strong, informed, steady and ready to face any challenges that would befall me as a result of the immune disorder and related treatments.

I had fought for more than 10 years for a diagnosis that would surely explain the multitude of weird biological “conditions” that had assailed me since I was but a wee child. I thought that life would be so much easier KNOWING what was wrong with me. I had that coveted diagnosis. Right?!?!

It seems I had programmed my brain into thinking that with a diagnosis came much-needed answers. Answers to questions like, “Why am I so exhausted all of the time?” Or perhaps, “Why am I nauseated, sweaty, aching and sporting a weird rash on my arms and legs?” There were so many questions and, as I found out soon enough, not many answers.

Don’t get me wrong. I am grateful for my diagnosis. There are millions of people out there still struggling for doctors to understand what is going on with their bodies, their children’s bodies, their loved ones’ and friends’ bodies. This is a tortuous experience and some never get that diagnosis nor any shade of understanding. My heart breaks for everyone touched by pain; which pretty much means all of us.

I woke up this morning thinking about the day I received my diagnosis. When my doctor spoke with me the last thing she asked was, “Do you have any questions?” My very slow churning brain answered, “Uh, not that I can think of at the moment.” I was not even capable of, “What does this mean? What should I expect? What is my prognosis? What are my treatment options? Is this even treatable?” These questions didn’t pop into my head until much later that day.

I left her office with a spring in my step that had completely sprung by the time I reached the elevator 10 feet away. It took all of my strength to hold in my wracking sobs until I got to my car. I cried because I finally had an answer and I cried because I finally had that answer. You know, two sides of the coin and all that.

In the months to come I started to discover that Rheumatoid Arthritis was not the Arthritis I thought I knew. I initially thought that one Aleve would relieve my pain all day. This was not the case. I learned that Rheumatoid Arthritis is an immune disorder. Your own immune system attacks your body as if it were a foreign invader. It not only affects all joints, but also your skin, gastrointestinal system, and all organs of your body.

I immediately started taking Prednisone (a steroid to reduce inflammation) and Methotrexate (a chemotherapy drug designed to suppress the immune system). My doctor was very supportive and hopeful that these medications would help improve my overall health.

I spent that first year “powering through” my disease and the horrible side effects of the medication. I would take my Methotrexate before my husband and I would do our weekly shopping. This way when the medicine kicked in I would be distracted. I was never distracted, but we did get some laughs when I would say, “Uh oh, my drugs are kicking in! I’m on fire from the inside, out!” I got some weird looks for which I am thankful. Without those looks, my husband and I would not have been laughing hysterically. I did feel like I was on fire, but knowing why I felt that way seemed to make it more bearable.

My family has always leaned on humor in uncomfortable situations. These situations include church services, weddings, deaths, funerals and a host of other serious events. We tried to stop but it’s genetic. During this first year and all of the years following we have never stopped laughing, but there have been days we could do nothing but cry.

You would think that by now (ten years into it), I would have a better handle on the situation. On the contrary, I don’t think I’m handling it well at all. I ran the gamut of Rheumatoid Arthritis medicines from the initial Prednisone all the way through the most recent biologics that the television assures me can greatly improve my symptoms. In my case, each new drug seemed to bring me a new diagnosis.

After quite some time on Prednisone I developed the flatteringly termed “moon face”. My face ballooned to about twice its normal size. I didn’t look very good and I felt much worse. After my bi-weekly blood test, I was found to be Diabetic. This is also an immune disorder bringing with it new challenges, new concerns, new treatments and new side effects.

Suffice it to say, over the last 10 years I have been diagnosed with Rheumatoid Arthritis, Diabetes, Migraines, Peripheral Neuropathy, IBS, GERD, Degenerative Disc Disease, Lumbar Facet Syndrome, Renal Failure, Kidney Disease, Esophageal Dysmotility, Heart Disease, Sjogren’s Syndrome, Fibromyalgia, Costochondritis, a tumor on my spine, Osteochondritis, several other syndromes, “itis”-es and more “mystery” problems.

Over the last 10 years my family and I have moved, my husband and I have divorced and my daughter and I have made a home with my mom. I try to take it one day at a time, sometimes one moment at a time. My health is not easy on those I love. I know it is not easy to see me in pain, to remember who I used to be and reconcile that with the person I am now.

I keep expecting to turn the corner of acceptance and feel like I’m moving forward. I have found this very hard to do when my body is not at all under my control. I try to stay as comfortable as possible. To me, this means less medication and taking whatever steps I can to reduce my pain. I no longer take the medicines for Rheumatoid Arthritis. It is just not worth it to me to risk cancer, additional disease, uncontrollable infections and possible death for a slim chance at remission. This is my decision but I certainly do not begrudge any others who decide differently.

For now, I am undergoing a series of procedures on my spine to help reduce my pain and improve mobility. Even knowing all of my diagnoses, I might wake up in the morning feeling sick to my stomach and “wonder” if I caught a bug or what might be the culprit. My mind does not automatically accept that I have upwards of five conditions that can cause this problem. My mom and I will sit in our living room trying to “figure out” why my back hurts so much. Dur. Maybe the spinal tumor, degeneration of discs or lumbar issues? I dunno, we have to discuss it at length.

Back to the fact that I’m not handling all this very well. I am thrilled to see my daughter growing and becoming more independent, but I am terrified by how quickly time is slipping by. I love hearing stories of her adventures with her daddy, but I feel very sad that I am not able to take her on adventures as well. I miss the days I could simply walk through Walmart and shop. Ten years later, I am still mourning the loss of who I used to be.

I am grateful for my life. I am grateful for the loving, caring, wonderful people in my life. I am blessed with every laugh and every moment I share with my family. I do not take any of these moments for granted.

It is a strange truth that I feel bone deep all of the things I stated above, but I still feel lost. I still feel sad. I still feel sorry for myself. I still have days when I just cannot stop crying. I still fear what the future holds, how I’m going to take care of myself and all of the what-ifs that come along with any life.

I don’t know where to go from here. I think a therapist might help me learn how to develop mental and emotional tools to deal with all of this. I know that I look at my calendar and feel a deep sense of dread. I cancel more appointments than I should, but I just feel too sick to get to them. (Ironic, right?) I feel angry about my health and then feel angry at myself for not being grateful for what I do have. I feel sad that I am unable to work but full of joy that I am here for my baby girl and my mom.

I have no idea what my future holds. I guess sometimes it’s okay to raise the draw bridge and rethink my plan of action. I need to realize it’s okay to be angry. I need to accept that I will not ever have all of the answers and that my diseases are not curable. I also need to accept that my mom is going to cry for me, she’s going to worry about me and she’s going to mourn for the loss of the good health she wanted for me.

Lastly and quite importantly, I need to recognize that my daughter understands my physical limitations and they do not bother her one bit. She thinks I’m funny, crazy, smart, pretty, clever, interesting and a good listener. She accepts me as I am. I have to say that again. My daughter accepts me as I am.

How lucky am I? The luckiest girl in the world. My family loves me and accepts me as I am. It’s time I learn to do the same.

Below I've included a video that describes some of the more serious symptoms of Rheumatoid Arthritis.