A.S. Face 0034 : Nicole Kalnicki

Nicole

My name is Nicole Kalnicki and I am 27 years old. Five years ago, I was physically “normal” as far as I was aware of. I had one doctor, almost no medication to speak of, and nothing remarkable in my medical records besides long-term insomnia.

That was five years ago.

Today, I not only see a primary care physician but also a rheumatologist, dermatologist, and a gastroenterologist. I am on 14 medications (that number tends to fluctuate throughout the year), and I have been diagnosed not only with Ankylosing Spondylitis but also Psoriatic Arthritis, Fibromyalgia, Myalgic Encephelomyelitis and the host of additional problems associated with these diseases.

On top of this, I was just told a few days ago by my rheumatologist that she suspects I may have Crohn’s disease.

How?

Why?

Five years. In five years, my body has betrayed me. It has made me feel as though my future has been destroyed. As though any chance of a future is a dream I will never realize.

Five years ago, I was in a community college, working hard to ensure I could transfer to a good university and secure enough financial aid to pay for my tuition. I didn’t have the money to pay for any of it myself, so I knew what it would take to get that money: outstanding grades, extracurricular activities, academic honors and achievements. And I accomplished it all. By the end of my two-year stint I had amassed an impressive curriculum vitae for a community college education. Not only was I accepted at the university I wanted, I was given every bit of financial aid possible: loans scholarships, grants, and work study.

It wasn’t enough. I fell well short of what I needed to pay, about $20,000 short. I wanted to try again the following semester. I had meant to. But my body was beginning to show signs of betrayal.

I was first diagnosed with Fibromyalgia in early 2009. Already for well over a year I had been experiencing pain and fatigue, increased migraines and painful abdominal symptoms. My doctor put me on Lyrica, but just to make sure she was covering her bases, referred me to a rheumatologist to rule out other diseases such as arthritis, Lupus, and Lyme disease. I thought it was no big deal, this rheumatologist was going to clear me, I was going to just be treated for Fibro.

It was going to be no big deal.

I was so, so wrong.

He did a number of physical examinations with me, as well as two MRIs and a blood test to see if I had the HLA-B27 gene (which I tested negative for). Though the gene test was negative (apparently not everyone with AS has it, just most), my rheumatologist diagnosed me with Ankylosing Spondylitis.

He had to be wrong. He just had to be.

I denied it to myself at first. The obvious indicator being that I was not positive for HLA-B27. But over time, the pain started settling in, the damage started being done. Pain in a very new place that I had never known of before cropped up in a very real, very obvious way. Pain in the SI joints. I had never experienced pain like that before. Coupled with the pain in my lumbar spine, many days are next to impossible to get through. The pain has progressed to my hip bones, creating a very deep, very excruciating band of pain around the entire area. It stretches across, encircling me, like a torture device.

And I cannot get away from it. Ever.

Over the next year, as I was trying my luck with Enbrel, a new and frightening symptom reared its ugly head: psoriasis. At first, they believed it to be a side effect of the Enbrel. I had to go see a dermatologist and I began a long and painful battle to get the psoriasis on my palms and feet under control. It wasn’t until early 2011 that I was told I had Psoriatic Arthritis, because of the progressive arthritis in joints in my hands, feet, knees, ankles, and neck. Not that this replaced my AS diagnosis. No, this was just on top of that. Which was all on top of the Fibromyalgia and M.E.

No diagnosis has ever replaced another. The worst part? They are all so real.

They had taken me off the Enbrel by that time and put me on Humira. And not long after, I finally spoke up about my stomach pains. I was getting worried by this point.  They had gotten progressively worse over the last 3 years and other more frightening symptoms were developing. Was this because of the M.E. (IBS is a major symptom)? Or a sign of a new, more serious problem? My PCP referred me to a gastroenterologist who ran some blood tests and found out I had C-Diff, an intestinal infection. He treated me for that, but the pains never went away. As of this date, I have no definitive answer as to what’s wrong, but my rheumatologist has warned me to get a colonoscopy. She believes I have Crohn’s disease, not only because of my symptoms, but because there is a high correlation between AS and Crohn’s.

I cannot deal with this.

Not another disease.

No more pain.

When I was in school, I saw a future for myself, a future that was something to look forward to. Now I see a future filled with pain. Nothing but pain. I can’t go back to school now, even if I did get enough financial aid. I can barely handle the 12 hour work weeks I put in, how can I handle that and school? How will I become anything more than I am, when Fibromyalgia and M.E. have wreaked havoc on my brain’s cognitive functioning and my body is nothing more than arthritis and a bundle of nerves, painful nerves?

Will I ever have a pain-free day again? Am I stuck this way? Is this the perfect metaphor for what my spine will do to me later on in my life? Can it be
different? Is it too late?

It’s never too late. Even I know that.

New York United States of America


14 Responses to “A.S. Face 0034 : Nicole Kalnicki”

  1. Dear Nicole,
    You are correct it’s never to late. Believe me if anyone knows that I do.
    I wish you the best in your journey. Thank you for allowing me to add your face to our site.
    Sincerely Cookie

  2. Thank you so much for sharing your story Nicole . I don’t have the gene either. Despite all what you went through, you accomplished a lot, even with all the effort and commitment you put in to find what was going on with you. That takes a lot of energy and courage. I am so proud of you for that. When I see your picture, I see a survivor.
    Wishing you well,
    Diane

  3. Wow, thank you for sharing you story! Your experiences, your life, your pain, struggle and emotions around it, ALL sounds sooo much like mine! So much so, It’s almost frightening. I am 30 and have been dealing with the symptoms of Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, PCOS, Hashimoto’s Disease, and a third, yet to be named auto immune disease, for nearly 5 years now … But, I was only diagnosed in April of this year (I also have a spine condition called Spondylolisthesis on top of all of it, which I have been dealing with for 20 years). Yep, it took that long to get answers, and to get doctors to listen to me and believe me! I’m so glad I didn’t give up, although I came really close, as I battled with many people – friends, family and health care professionals – who all began to suggest that I was crazy. When my Rheumatologist finally diagnosed me, he said he was shocked no one else did, as the diseases had progressed quite dramatically, and the damage to my spine and joints is so extensive it’s scary. I too fall into the box of not fitting into … well, “the box,” .. for blood work and other related diagnostic criteria. I did not test positive for the gene nor do my sed rates and c reactive protein show what they typically look for. It’s pretty insane to have your hands so swollen they are twice their normal size and your face so inflamed that you can barely open your eyes, yet blood work come back saying you don’t have inflammation levels they would expect. But I have such an awesome constellation of symptoms it’s astounding, and the massive damage throughout the spine and joints is overwhelming. Anyway, one thing that really struck me about your story was the pain you deal with related to your life and future. I could not agree more and am desperately battling with myself and the situation – not to mention getting others to understand why I am not the attorney with all the fabulous graduate degrees I was on the verge of. I am trying to find a new path, .. a new way to use my talents and passions, .. to make my future what I’d like, but it’s not easy by any stretch of the imagination, and most days are “bad days.” Obviously I could go on for a long time talking about this and I’d LOVE to connect with you! That is, if you’re interested?!? You can find my pages on Facebook under Psoriatic Arthritis & Ankylosing Spondylitis. My name is Brenna Poole. And my main blog page is themanyfacesofhealthandillness.blogspot.com. I just created one about Psoriatic Arthritis, but I’m not done with the main pieces and I’m somewhat of a perfectionist (at least as much as my energy allows now, lol) … but just in case, it’s psaandas.blogspot.com. And, lastly, lol … healthandillness@gmail.com. I really hope to talk with you sometime! Blessings of energy, health, laughter and a little less pain … Brenna

    Brenna said this on October 22, 2011 at 4:40 am

  4. Hang in there Nicole, we’ll all get through this! Send me a message on facebook if you’d ever like to talk.

    mike bruffey said this on October 22, 2011 at 4:53 am

  5. Believe! Everything will be well someday.

    ivanhoe ardiente said this on October 22, 2011 at 11:51 am

  6. Thank you so much for all of your comments and inspiring words! It’s wonderful people like you that remind me I may feel alone in my pain, but there are others just like me going through it too. And Brenna, than you for sharing your story, I will definitely check out your blog and email you. I’d love to talk to someone with such similar diseases as mine. You guys give me such hope and inspiration!

    Nicole Kalnicki said this on October 22, 2011 at 5:03 pm

  7. I pray the Higher Power holds you gently in his arms on your worst of days Nicole. You are precious and your story could not have been printed soon enough, I needed to read it today.. thank you sweety.. Gentle Hugs

    Cynthia said this on October 23, 2011 at 3:01 pm

  8. Thank you so much Cynthia, I’m so glad my story has helped someone today, because I read of all these wonderful people on here all the time and the struggles and triumphs they have been through and they are a constant source of inspiration to me, lifting me up when I need it the most. Now my story has hopefully done the same. Gentle hugs

    Nicole Kalnicki said this on October 24, 2011 at 3:02 am

  9. Hang in there, it’s never too late. The doctors thought I had lupus as well–I was diagnosed at age 22 and am now almost 50. My spine is fuse a couple of inches but movement/exercise/ prayer, the total fusing of my back has been kept at bay. Two of my boys have AS–each was suspected of also having Crohn’s. I outgrew the stomach issues associated w/AS. My oldest has less troubles now, (though he did have his gall bladder out as a result of the problems) but my middle son still has major issues. Hang in there. Hugs.

    Elizabeth said this on October 24, 2011 at 4:22 am |

  10. Thank you Elizabeth, maybe it will just be IBS or something similar that will stop and not Crohn’s in my situation as well. I hope for the best for you and your sons. Gentle hugs

    Nicole Kalnicki said this on October 24, 2011 at 4:28 am

  11. Hi Nicole, my heart goes out to you. I was diagnosed with Ulcerative Colitis first after many years of doctors having no idea what was going on until I ended up in hospital from there the AS set in. I can totally relate to the pain in the SI joints. Hang in there darl there is a light at the end of a very dark tunnel. Voicing and writing down how you feel is the best medicine. Take care and all the best to you.

  12. Hey Nicole, just read your entry. Bloody hell I really hope you get to hear some good, positive news for once. Stay focused…we’re here to support each other and to kick AS right in the botty!!! x

  13. (also posted on the StopAS.org page) Nicole, Wow, that is a lot to deal with. Thank you for sharing your story. I hope that you will comment back on the page with an update. I can relate to so much of what you so thoughtfully expressed. If your journey is anything like mine, even though it seems unimaginable, some days/months/and years are better than others. When first Dx, I was told by some older spondys that the pain can kind of ‘burn out’. Hopefully your early treatments will really help in the long run. Sending thoughts and prayers your way for health, peace and happiness.

  14. Hi Nicole, thank you for sharing your story. So far your story is the most similar to mine that I’ve read. I to have psoriasis on my hands and feet. It was actually my first sign of this horrible disease. Then about a year later I hot the pain from my S.I. joints. It took them about 5 months before they did the mri of the correct area and said it was sacroilitis. From there the doctor said I had A.S. and psoriatic arthritis.I did not test positive for the gene marker either. Then I was having intestinal problems. Doctor did a colonoscopy against his wishes. He believed it was unneeded du to my young age 38. But he found a few polyps, a fistula, and my intestines were extremely inflamed. He said he believes I have crohns disease bit can’t find the location. I had to stay in the hospital because my intestines developed a hole. Thank goodness during my stay it healed itself and I didn’t have to get a colostomy bag or my intestines partly removed.i was put on humira for 5 months and my si pain was gone. It was wonderful. But I developed different strange infections and my spine began to flare. So they took me off it and now I’m getting ready to start Cocentyx. Praying g it works. Anyways I thought you might want to talk. You are the first story I read that’s so similar to mine. Wish you the best. Hang in there. I know it’s like a nightmare but there really are boughts of good times and happiness too. Emi

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