Miss Understood: Six Years in Pain

Miss Understood: Six Years in Pain

August is both a happy and sad month for me. Happy because I get to celebrate another year of life. Sad because days before my 23rd birthday I was diagnosed with rheumatoid arthritis and fibromyalgia. It’s also when I met my first rheumatologist and developed a fear and hatred for doctors.

1280px-Birthday_cake,_Downpatrick,_June_2010Before falling ill, I rarely visited a doctor’s office. I rarely got sick, for that matter.

I had no idea what was in store for me. I didn’t know I would spend the next 6 years in pain, every day hoping it was all a bad dream. Not only did I have to deal with that — but having a doctor who didn’t hear me out and just wanted to shove dozens of pills down my throat didn’t make things any easier.

My first doctor landed me in the hospital after a few months of treatment with liver problems. Once I wised up and decided enough was enough, I went on to meet my second rheumatologist. She was more caring and genuinely listened to me. However, the sicker I got the more flustered she became. I was sent to several specialists and felt like I was being tossed around because no one knew what to do with me or how to handle my case.

The day I met my current doctor a weight was lifted and I felt hopeful. He told me something I’d never expect a doctor to say. He said that by my next birthday he wanted me in remission and instead of seeing him on a weekly basis, one day I’d only see him for yearly check ups.

A lot of people think doctors like him don’t exist, or that I’m simply gloating about how amazing he is. But I know first hand that sometimes it takes years and patience to find the right match.

Even though it hasn’t happened yet, I know that at this moment I’m the closest I’ve ever been to getting there. My depression is gone and so are the pills that made me emotionally numb. I don’t wake up with as much arthritis stiffness as before and overall I feel good.

For some, it may seem like small victories but to me they’re epic wars I’ve won.

I’ve learned so much about myself through all my pain and misery. I’ve shut everyone out, given up, broken down, and reached my breaking point. But after all of that I’m still standing, head held high on the shoulders of everyone who didn’t give up on me.

I realized what was truly important to me and that I didn’t need much to make me happy.

While others wish for fancy gifts, expensive jewelry or lavish parties, I only have one wish.

Remission.

Arlene Grau

Arlene Grau

Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 5 comments for this article
  1. Malia at 10:12 am

    NOTSONUTSO, I just wanted to comment that a friend who is a medical researched says that once you have one auto-immune, you are more likely to get others, you become a bit of a target.

    Thanks for this piece, I also share my birthday with my diagnosis (8 years) and beyond wishing happiness for my kids, I wish for remission every time! Happy Birthday and good luck!

  2. Mea at 9:22 am

    I am like you in so many ways. I pray for remission as well. The only thing that happened to me, that you didn’t mention, was the doctor that kept saying it was all in my head. Of coarse it is all in my head, that is where my pain receptors are located! lol. After I had had a few frustrating appointments with him, I kicked him in the shin and asked him if that hurt. When he said it did, I informed him that it was all in HIS head and told him not to bill me for that appointment. Hopefully he will not approach other patients in that way. (Afterwards I felt very bad about acting out in that manner but he was a very not helpful person.)

  3. Veronica Clark at 4:38 pm

    Miss Understood, what u have to realize is that life is what U make of it. If u want to be depressed, u will. If, like me, u wld rather get up in the morning, feeling all the pain, and say SCREW THIS, and attempt to get on with life the best u can, with humor, then it will happen.
    I have fibro myalgia also, with sjogrens, degenerative disc disease, and severe migraines. When I was 33 I was told I would be in a wheelchair by 40. Am now 53, and not in one yet, but think perhaps it’s time…..soon, anyway.
    Quit focusing on the negative, and train your brain and mindset to focus on the positive. See the humor in life, and even in yourself. Smile.

  4. NOTSONUTSO at 10:31 pm

    How do you have so many autoimmune conditions? Never heard of that. At least you have diagnosis & hope for remission. I have peripheral nerve pain throughout my body as well as abdominal neuropathy that causes constant pain & bloat. I’m in pain every waking moment & that fear & hopelessness are wearing me down. I, too, have a good doctor. He holds my hands & prays for me. But he is already retired & working a “retirement job.” I live in fear that he will decide he’s had enough of being a doctor.

  5. Myron Shank, M.D., Ph.D. at 12:47 pm

    As a physician and a fellow human being, I am thrilled by the progress you have made. May “remission” become more than a dream!